Lyme Lights Utah

Lyme Disease and Silly Doctors

2012-02-05T22:31:00.000-07:00

It's now February 5, 2012. I'm able to look back at 2008 and I'm unable to grasp the severity of my illness back then because time has blurred those memories. It is night and day now. Instead of the constant pain, I now have pain when I'm on my feet more than an hour and when I use the left arm, particularly on the computer or when I look down to work on a project. While I still have pain, it is nowhere near the pain I had in 2008. I cannot go to Disneyland or simply shopping for more than a few hours without joint pain, muscle pain and fatigue, but I can tolerate it now -- with help of medication. I can't remember the last time I had the major brain fog or the unending fatigue that kept me in bed so often. I make dinner, clean my house, pay my bills, do hobbies, eat and enjoy life.

But...this week I had an interesting and bothersome encounter with one of THOSE doctors. I was given an MRI because of a small lump inside near my elbow -- not a lymph node. The MRI showed nothing in the area of the lump, though I can still feel it. That's fine with me. I'm not panicked about the lump in the very least. The MRI did show several small lesions on the humeral head in the subcorticol marrow of my left shoulder. The radiologist was of the opinion that the lesions were non-aggressive in nature, but if the clinical picture suggested a bone scan then the doc could order one.

I should have kept my mouth shut when the doc called, let him give me the brief low-down and said, "thank you, goodbye." I mentioned to him that maybe I should have the bone scan done because that is the very arm that has bothered me since 2008. That was my mistake. Here is where it gets really good...After attempting to give this doctor, who is a dermatologist, the down-low on the problems which began in 2008 in a 10-minute phone call, he actually had the nerve to mention to me that depression can cause pain.

He decided for me that I was depressed. When I told him I'm sure I have had some depression because it was frustrating that doctors could not figure out what was wrong with me and that was depressing, but that I knew for certain that my left arm pain was not due to depression, he simply replied, "You would be surprised."

Yes, doctor, I would be surprised. In fact, I would bet my life, but preferably your life that my arm pain is due to an injury that occurred about 10 years ago and when I became ill in March of 2008, the Lyme bacteria chose to take up residence there or in a nearby nerve. I feel like this doctor threw me back to 2008 when I was on a quest to prove that I was legitimately ill. He hasn't seen my medical records, but I've told him my background. Based on what he's heard, he's decided I'm depressed. This is rather hysterical. I'm debating, do I take the evidence with me to my next appointment and throw it in his face or do I just find a new dermatologist? And why is my dermatologist doing anything other than dealing with my epidermal issues?

Unless he can explain to me how depression caused my positive Lyme tests, positive mono tests, elevated viral titers, carnitine deficiency, low CD57, muscle weakness, joint pain, burning pain, erythromelalgia, a rash on my scalp, gastroparesis, a dilated aorta, acute GERD, burning throat, benign peroxysmal positional vertigo and so on, I'll just jot him down in the "illogical" doctor black book. The most telling part of his over-the-phone diagnosis was in his stating that he too was depressed at one time and experienced pain. Now, I get it. I must have caught his "mass hysteria" at one of my appointments. Does he even deserve the time and effort it takes me to copy my lab reports and diagnoses from doctors who specialize in fields other than dermatology?

What a waste of time. His mistake was that he should have asked for the copies of my medical records that uphold exactly what I have told him. Instead, he chose to ignore the facts and attempted to put his own psychological issues on to me. No, thanks. You can keep yours. I'll keep mine. It's doctors like him that depress me. I don't need to hear his mumbo jumbo based on none of the evidence. Though I know that he is the one at fault, there is still that little part of you that feels the jab. Grrrrrrrrr!

I think I will take the copies in, lay them out for him to see and say, "Other than your diagnosis of depression, what are your impressions of these labs, studies and diagnoses?" If he can come up with a diagnosis of depression based on no evidence, he should certainly be able to interpret the actual evidence within 10 minutes, don't you think? Yep, that's what I am going to do -- put him on the spot. Thus ends my post for today.

Florida Republican Primary

2012-01-26T23:54:00.001-07:00

It's good to focus on other things in life when you're sick. It takes some of us longer than others to realize it. That's why my blog is turning to other things on my mind during the day. Before I get into politics I'll let you know the latest on the Lyme/health issue.

I had an MRI done because there was a small lump on the inside of my arm about three inches up from my elbow. It's my left arm. Though I can feel the lump, it doesn't show on either MRI or CT so I guess I'll forget about it. They did find what I think may be part of the cause of pain in my arm. The impression states the following:

"Clustered foci of signal abnormality involving the subcortical marrow over the anterior humeral head, nonspecific. Cartilaginous lesion suggested. No aggressive features. This could be further evaluated with bone scan if clinically indicated."

I'm not going to jump to any conclusions. I'm still waiting for my doctor to call and let me know if I should get a bone scan. I care what it may be, but I'm tired of being given clues that don't tell me if the Professor did it in the study with the candlestick. I'm afraid it will just be one of those clues that leads to somewhere but the road forks into 140,000 different directions.

Soooo...on to tonight's debate.

Funny how impressions of candidates can change so easily with one debate. I was really disliking Newt on my last blog. I'm still not a big fan, but I softened a bit. I don't want him for President. I don't think he's qualified. I think he should stick to book writing. He has the skills to be a great author and he's always mentioning, "In my book," or "I wrote a book," so go buy his books and let's vote someone else as our Republican candidate. Having said that, Newt and Santorum are tied for third place on my poll, and I'm certain Newt will push Santorum carefully and meaningfully off the teeter-totter. I can visualize Newt's cute smile as he watches Santorum stomp his foot and run in to tell the principal what Newt has done. Newt does have a cute, boyish smile. He's like the baby brother we all want to protect. His wife is a negative for me. She looks so plastic. Her smiles seem forced. I want to just mess her hair up so badly. I want to get my fingers in there and shake it all over the place. She is definitely pro-hair spray, pro-botox, pro-filler and pro-arts. She sings with her church choir. She gets paid a pretty penny to do it. So much for volunteering. The arts are great and important, but in this economy it's not one of the issues that touches the deepest recesses of my heart. She plays the French horn and the piano. I don't want a First Lady whose focus during this economy is on the arts. There are too many other issues that are pressing. Newt has two grandchildren. Is it just me or is that strange? He has two daughters and two grandchildren. I should tread carefully here because I realize some people struggle with becoming pregnant, but do you think that was by choice? I don't think Newt's family represents the average Republican family, who has at least three children like me, har har. You must have three children to draw the line between Republican or Democrat, didn't you know that, Newt?

Santorum makes me want to visit the Sanitorium. He's reminds me of stories that Frankie McCourt told in his biography, Angela's Ashes. It's a great book and even better in audio because Frankie tells the story with his Irish accent. Anyway, Frankie tells of the Nuns at Catholic school that used to whack his fingers with a yardstick or ruler when he got out of line or just wasn't in line enough. I think Santorum would definitely slap my fingers with a yardstick or ruler for being a jaywalker. He is definitely the black and white governor. Not good for Lyme disease patients!!!! By that, I mean everything to him is either black or white. I disagree. Sometimes there are gray areas -- the Lyme controversy, for example. We have those who believe it is black and white (mainly those IDSA doctors) and then we have scientists who say, uhhhh....no, it is not black and white, it is still gray. Lyme patients are being treated according to this "black and white" mindset. Santorum is too harsh, too whiney and trying too hard to be tough. He needs to soften, show some sense of humor and take a chill pill. His wife seems nice. She would make the most attractive First Lady (because that matters...ha ha). They have eight children, seven living and one of those seven with a disability. I think she has a lot to offer women of the country.

Romney is still in the lead for me. Oddly enough, Donald Trump gave some seriously good kudos to Rommey in an interview I saw tonight. I couldn't believe my ears. He had previously said something to the effect of, "I'm sure he'll tell the truth because he's a Mormon," in regards to Romney about four months ago. I forget what the controversy was, but I found his religious remark to be tasteless. If Romney were Catholic or Jewish would he have chosen to insert his religion? The problem with his comment is that anyone who is human makes mistakes. To assume that anyone in any religion or no religion is always honest is fairly absurd. It also implies that other religions are not honest since he likely wouldn't have inserted a religion had Romney been Catholic or Jewish. As for Christians, they are fairly aware of their shortcomings, otherwise the atonement of Christ wouldn't be an integral part of their religion. Someone ought to let Donald know. Tonight, however, Romney light beams were coming out of his ears and nose. I was thinking, Seriously? I have to like Donald a bit now? He has moved from the combover to hair transplant so I guess I'll soften on him a teency weensie bit. Romney might lie about using Just For Men to cover the gray. We will never know because Gingrich and his Superpacks are not likely to bring up that issue.

I would like to know, as I'm sure does most of America, Is Newt a natural gray? Does Santorum polish his forehead, and what is wrong with his left nostril? Is Mitt predisposed to having a unibrow? Does Paul stay up all night? His eye baggage would indicate he does. Can we have a debate between the First Ladies? Oh, I would love that debate. That could possibly tell us more about these candidates than anything else. These are very important questions.

Oh yeah, back to the subject. I think Mitt has the experience to run the government, put people back to work and beat Obama. He knows how to run a business succesfully, he knows how to delegate (unlike Obama who works as a dictator). I also know he's a romantic. I have some inside information from an uncle who happened to serve in the same mission as Mitt. It was in France. I'll give you the unverified, unedited version straight from my Uncle's mouth. Ann had plenty of suitors after her while Mitt was on his mission. Being aware of this, Mitt would ask my French aunt (who was single then) to help him write letters to Ann. I've read the things my aunt wrote to my uncle when they were courting. She is very eloquent and poetic in her writing. It's Shakespearean. Mitt could not have gone wrong by asking my aunt to help him. Again, this is the story told to me by my uncle. If the story is true, Mitt was very smart in seeking my aunt's help. Ann waited for Mitt to return and they were married. Back to First Lady potential, Ann Romney has MS and has conquered breast cancer. She's raised five sons and has 16 grandchildren. She would make a fantastic First Lady. If you like blondes better than brunettes then she is the most attractive First Lady.

On to Ron Paul. Gadz this guy is funny. He's the Dad or GrandPAUL everyone wants. He is by no means a looker, but he draws you in with his sensr of honesty, humility and humor. I disagree with the more extreme positions he takes, but I can't rule him out just yet. He is so likable. I think his likability has the potential to draw in democrats and independents. He feels the most like Regan in personality. He's not likely to be frazzled by Obama. I don't think Obama's attacks would have any affect on him. I think he'd brush off the attacks like dandruff. He has the ability to diffuse anger with his lovable wit. He's the one guy who could coax Obama into feeling safe with him. He is the perfect personality to deal with Obama. Most of the candidates' personalities are antagonists to Obama, but not GrandPAUL'S. GrandPAUL is the psychologist Obama needs to overcome whatever hurt him early on in life. He would have Obama sucking his thumb again, holding on to his blankie and asking GrandPAUL for a bedtime story. His wife seems the same. She's Mrs. Santa Clause. I want to be adopted by the Paul family for a month just to see what it's like at their house. I think this is truly what appeals to the young voters. They feel safe with him. He and his wife give you a nice, comfortable feeling. I believe he's telling the truth, but I haven't checked his religion to see if he belongs to one that tells the truth, wink, wink, nudge, nudge.

So the lineup now goes:
1. Mitt Romney
2. Ron Paul
3. Newt/Santorum (I don't want either of these guys, but it's politically correct nowadays to give everyone a place and a ribbon.)

I said I wouldn't vote for Newt at all if he won, but I probably would now. It makes me think these scoundrels are so smart at figuring out the voters. It's either that or I'm playing bipolar politics. Whatever the outcome, I'll be glad when it's down to one so we can get the candidates back together and shore up the Republican party. I hope they can kiss and make up when it's all over. Newt will probably recommend that Callista publicly kiss and make up with Santorum's wife and Romney's wife, but that's another story.

Newtered by South Carolina

2012-01-21T20:56:00.001-07:00

I believe the United States was just Newtered by South Carolina. They just voted for a man without character, without proven skill in creating jobs, without any business running experience and without any experience running a state. They voted for a man whose own constituents wanted him out because of ethical misconduct. They don't feel character is important.

Well, we've reached that point in time where convicted murderers should run for President and we can disregard their past as long as they say they have "repented." Bernie Madoff had no character. Why is everyone so mad at Bernie? Ohhhh, because Bernie did something to them. Newt only hurt his own family members. I see the big difference. Since it isn't based on character any longer, anyone can run for President as long as we think he can do the job -- sex addicts, murderers, armed robbers, pedophiles and Bernie Madoff as long as he repents...the list goes on. As long as they can run the country, have claimed repentance on their social trespasses, they should run for President and have as much chance as the man or woman who never did such things but is equally qualified. Go TEAM U.S.!!! Good job South Carolina! Long live the Obama agenda.

This is where Ron Paul really hit a home run. He was so right when he said that the laws of our land are based on the morality of our people. South Carolina proved his point. I suppose if South Carolina represents the majority of the country, then Ron Paul is right, we no longer care about character or morality in this country.

South Carolina didn't seem to care that Gingrich left his first wife (his high school geometry teacher)Jackie Battley, while cheating with his second wife, and left his second wife while cheating with his third wife, Callista. Okay, so I guess South Carolina wants to disregard this "little" character flaw. Certainly if he doesn't care about his own family, he will care about yours.

So disregard that all together and you still have a man who left his first wife after she was diagnosed with cancer and had a tumor removed. The Gingrich camp will tell you that he served her with papers two months before her tumor was removed so that had nothing to do with it? Really? You think? Well, anyone who has been ill knows that it will put stress on a marriage. She didn't just wake up with a tumor that day. It is how you respond that either makes you great or makes you a coward. I suggest to you that Gingrich is a coward. He put his tail between his legs and ran. He doesn't know how to care for sick people. He can only take care of himself. He and his wife may have argued for years, but it's in times of illness that truly strong, courageous individuals prove they are strong and courageous. I suspect for Newt, it was the icing on the cake. Instead of getting a new lease and look at life given the opportunity to reevaluate what is really important, he ran. After all, he was "marriage insured." He was insured because he already had another wife waiting in the wings. So he divorces Jackie in February of 1981 and in August of 1981 he is once again married.

Out from the closet comes his second wife, Marianne. Just two short months after she was diagnosed with multiple sclerosis in April of 2000, they are divorced. The lesson to be learned here is: If you are married to Gingrich, do not get sick or old because he does not know how to care for the sick or frail. You scare him.

Callista comes off the Gingrich waiting list and becomes his wife in August of 2000. Callista needs the keys to the fountain of youth or she needs to get acting classes ASAP in case she ever becomes ill because no one gets out of this world alive.

The first question I have is, What is wrong with persons, either men or women, that are willing to be on the waiting list for adulterous people? I can understand that there are some very reasonable, decent adults that will make a bad decision and commit adultery because they are in a bad marriage, but a repeat offender like Newt is a far different situation. That is a psychological problem, not a mistake.

Newt wants us to believe that he and Callista entered this race knowing they would be attacked but "the country was worth the pain." Oh, how sweet. His country was worth the pain, but his family wasn't. He'll do it for us, but he doesn't mind hurting those close to him. That is a tender moment, one which makes me want to hurl from Utah all the way to South Carolina. He played South Carolina just like he has played every woman (and there have been many more alleged affairs). South Carolina signed up for his waiting list and Gingrich can't wait to get the rest of the U.S. to sign up. He is skilled. His personal life and trysts have prepared him for his mezmorizing travel around the U.S. You have all just become the magician's assistant playing along in his grand illusion at the expense of your country.

He's a great debater, isn't he? Super. Obama is a great debater as well. Obama was such a great debater that he's now President. Do you want a great debater in the White House or do you want someone who can run the country? I can understand that there are conservatives concerned about Romney's
so-called "moderate" stance, but they threw Santorum to the dogs in South Carolina as well. I have yet to hear that Santorum has done anything out of line with conservative beliefs. There is no excuse for Santorum not to be in 1st or 2nd in South Carolina. You can disagree with Romney all you want, but when you compare Santorum to Gingrich, you have to wonder how conservatives could oust a conservative with character and with a record of success in favor of a man with a seriously questionable character.

Perhaps the precedent set by those who voted for Obama is the precedent South Carolina chose to follow. The country didn't care about Obama's character either. It was okay if he had been affiliated with hate groups. As long as you can woo the audience with your magical illusions, you'll make a good President.

I was disgusted with Angela McGlowan's (FOX political analyst) comments today. This isn't word for word, but she stated today that she didn't think women would vote based on character. Women want someone who can run the country, protect their families, blah blah blah. I'm stumped how a woman could actually seperate character from job effectiveness. Angela is 100% wrong if she thinks that job performance does not require character. In a dog-eat-dog world character doesn't matter. I thought we lived in a society where people cared about people. I thought laws were set up to protect us and help us. Doesn't that imply that we should have character, we should care for one another? There is no reason for laws if we have no duty to society. Duty to society requires one to have character. It's insulting that Angela would pretend to speak for all women. No, Angela, some women like a man with character. Committment to marriage requires that one have character. Marriage is not easy for anyone. If one person in a marriage doesn't have character, IT WILL FAIL.

I don't think South Carolina voted based on facts. They voted based on who could slam their fist on the pulpit, who could talk back to the media, who could make himself appear as a martyr when he is truly a predator. Newt is a skilled magician, but votes should not be based on illusions. They should be based on facts. I'm disgusted with what happened in South Carolina. Ron Paul called it as it happened. The morality of the people in this country is failing and the U.S. will continue its downward spiral until they wake up to what is really happening. Last but not least, I'm surprised that the supposed number of religious individuals in South Carolina voted for a man with no character. I don't think I need to remind anyone that God has character.

EDUCATION WITHOUT RELIGION MAKES MEN CLEVER DEVILS!

The Republican Lymearies, I mean Primaries....

2012-01-20T01:38:00.000-07:00

So today the Republican Primaries are on my mind. I watched Monday's debate in South Carolina and tonight's debate and felt like writing down my impressions of the candidates thus far. In the last election between McCain and Obama, I actually wrote in Mitt Romney for my vote as President.
Never at any time did I feel that Obama was the man for the job. Obama was a "good speaker" to those who expected him to be a good speaker. We often hear what we want to hear or expect to hear. Sometimes we may even hear that the sky is yellow when we know it's blue, and yet we can be convinced that perhaps it is yellow because it was said so eloquently. Obama was magnificent at painting a yellow sky. Obama didn't hide many of his questionable beliefs about people or his questionable affiliations, yet the amount of people that gave him $200 every time he passed go baffled my mind.

In my opinion, aside from action, the next best way to interpret whether verbal langue is truth or a lie or whether someone is truly passionate about that which they speak is to also interpret the unspoken language...the non-verbal cues. Have you ever tried putting on a gigantic smile in the midst of absolute despair? I'm guessing the majority, if not all, of the answers would be no. Our facial expressions and movement of our head tend to agree with our verbal communications or emotional state. If you don't like mushrooms and you say, "I don't like mushrooms," you will shake your head in agreement of the fact that you do not like mushrooms. If you say, "I love Disneyland," and it's true, you will nod your head when you say it. Professional human "lie detectors" look for these little indiscretions when determining whether someone is telling the truth.

I notice that Obama holds his chin very high up to the right or left when he is speaking. He never seems to look at people, but rather over people. This consistent pose, along with some not so obvious others leads me to believe he is narcissistic. I don't believe he cares about anyone but himself. I think he's the "all about me" president, disguised as the poor-man's president. I think he's a Rumpelestiltskin, preying on desperate individuals, blaming others when makes a mistake and running away when he doesn't get what he wants. I think he is easily intimidated and fires back with false conceit in an attempt to intimidate others. How he could be affiliated with the Black Panthers and yet get the citizens of this country to ignore the racial prejudices of that group is astounding to me. Martin Luther King fought for racial equality and against racial injustice. I do not believe Martin Luther King would support the reverse discrimination that groups like the Black Panthers participate in. It is sad to see his name used by groups that claim to admire him, yet mimic the very behaviors he opposed. Martin Luther King understood that all humans regardless of color deserved to be treated equally. Obama has far too many ties to racist organizations and far too large an opinion of himself to get my vote.

So on to McCain. His military experience was beneficial and I thought he could make some educated decisions in that arena, but he was too harsh a personality and came across as a chauvenist with an ego. Rumors of how he treated Sarah Palin put him in the dead zone.

Though I consider myself a conservative Republican, I settled on Hillary Clinton. I didn't agree with many of her views, but I felt of all the candidates she would be the most agreeable and the most likely to listen to the facts and compromise. She had also voted with conservatives at times during the Bush Administration. I didn't see her as a potential dictator and she had to be one tough cookie after having been torn apart in the media from everything to the way she did her hair to Bill Clinton & Monica Lewinski. I would have loved to see Condaleeza Rice run for President. She always impressed me, but she didn't run. That left the only candidate in the race who could have changed my mind on Hillary to be Mitt Romney, but after what I felt was a highly religiously-charged attack by so called religious individuals, Mitt's race finished early and Hillary became my choice. I was all Hillary until Obama took the democratic ticket and she was ousted.

It was down to Obama and McCain. I was stuck with the thought of voting for the Republican because he is the Republican candidate and I need to support the party, but in the end I had to vote my conscience, not vote for someone simply because they were representing my chosen party. I decided I would vote for the candidate who I felt could lead the country, had the experience and would make every effort to do what was right. I wrote in Mitt Romney as my presidential choice and I'm glad I did. McCain lost, the USA lost with Obama as a president, but I didn't. My conscience was clear. I voted for who I thought was the best candidate.

So now it's 2012....In the beginning I was unsure about Mitt Romney this round. So many rumors were going around and I would need to verify their validity before I could feel comfortable about voting for Mitt.

I liked Cain. The 999 plan seemed like a nice plan to me though I expected it would need a bit of tweaking. I liked that he was empathetic to those with health issues. I didn't like that 999 upside down was 666 so I would suggest future candidates turn their numbers upside down first before deciding to use them. I liked Cain's sense of humor and he seemed initially to have the right amount of umph to fight in a debate. That was until his personal life was brought into the mix. I still liked him even after he had been exposed as having had an affair. I thought, Everyone makes mistakes. He had admitted to it and I liked that he took responsibility. But then we heard more from the women who made these allegations regarding sexual harrassment, one of which was very convincing and for whom I felt compassion. The more they spoke, the angrier Cain appeared. It seemed Cain's buttons could be pushed too easily and I did not want foreign leaders to be able to push those buttons so easily on a President of my country. I wanted someone who could control his anger and react with reasoning. I've always felt Condaleeza Rice is a master with reasoning out situations and keeping a cap on her emotions when it comes to making leadership decisions.

Come back Condaleeza! Come back!

Santorum was my next choice. He seemed to be on his game, knew what he was doing early on and represented the issues I was concerned about. He was a younger candidate, like me and he didn't allow people to walk all over him. But it didn't take long before his inner child emerged and he began behaving like a bully on a playground -- not a very good bully, rather the kid who gets bullied and attempts to bully back behind plexiglass and steel walls. His immaturity surfaced. He's quick to jump to conclusions and easily offended. He's VERY defensive. I want my President to defend, not be defensive. Defensiveness is a quality I do not admire in the least, though I have been guilty of it myself at times. When someone goes on the defense as often as Santorum does, it means to me that he will have a very hard time admitting when he is wrong. He will deny as long as possible even to the detriment of others and himself. That is not the kind of President I want. That quality is very reminiscent of Obama. Obama is a very defensive individual. As a sidenote and really of no importance politically, I noticed tonight that Santorum seems to have something wrong with his nose on the left side. I don't think he can breathe very well out that nostril. It almost appears collapsed to me. Just noticing. I found myself feeling somewhat out of breath watching as his left nostril did not seem to fill with air. Maybe I'll google Santorum + left nostril. Yep, these are the things I notice sometimes. I found myself wanting to take in a big breath for him.

So I fell of the Santorum train and hopped on the Gingrich wagon. Newt seemed so mature and wow is he well spoken. People say he's a great debater. I prefer to say he's well spoken. I don't know that he debates well, rather he has a great ability to use words to distract you so that people don't even realize he evaded the answer. I was impressed early on with his experience, his confidence, the fact that he is well spoken and his quick wit. Enter Donald Trump. The minute Donald Trump hopped on the Newt bandwagon is when I hopped off. I consider Donald Trump to be incredibly narcissistic and selfish. Are you kidding me? I'm not supporting any candidate who buddies up to a guy who sees women as sex objects and works only for himself -- in my oh so humble opinion. "The Donald" is attractive to some women because he's as rich as the grass is green and some women will sell out for that. I'm not one of them. I'll give Donald kudos for having an IQ, but his EQ was born and raised in the Middle East. I don't like Rosey O'Donnell but I would never have said the things to Rosey that he said to Rosey, especially with that combover he's sporting. That Gingrich-Trump alliance was an immediate turn-off. My abandoning Gingrich was further supported by a donation he received from Sheldon Adelson, a casino mogul. Oh yeah, that's what I want in a President -- a guy whose good friend lives off of desperate, addictive behaviors like gambling. I gambled a few times when I was younger. I couldn't stand to lose $40. It's just not an appealing activity to me. But it's one thing for me to throw my money on the table. It's entirely different for me to be the one living off of the guy throwing the money on the table. I would feel digusted with myself as a casino mogul, knowing that I sleep well at night while some of those gamblers lost everything they had on false hopes that I provided them. It would personally make me sick to my stomach even though I know they had a choice not to gamble. To me it's like handing a gun to a suicidal person and then saying, "All I did was hand him the gun. He is the one that pulled the trigger." Well, okay, if that's where your conscience takes you then you've probably already quit reading this segment. Let's not forget that "The Donald" is a casino man himself. Newt didn't just fall a few notches on my belt, he fell all the way down the elevator shaft of a ten-story building when he buddied up with these two. Newt is one you must record and rewind because you will find that he is guilty of the very same thing he alleges the other candidates are doing. Look at Mitt Romney and Bain. He alleges that Bain invested in companies knowing that they would fail and reaped profits before the failure. Yet Gingrich buddies up with men who make money off of gamblers.

Bain invests with the hope of bringing and already troubled company back to life. If they are able to revive the company, they reap much greater financial benefits than if the company fails. While some companies thrived, others continued a downward course, which was no fault of Bain's. Whatever benefits Bain received from the failing businesses is now being used by Newt to discredit Romney by referring to him as a "vulture capitalist." He would like us all to believe that Bain wants all of these businesses to fail because they make more money in their failing than they do in their succeeding. Compare this to Gingrich who has no problem taking donations from a casino mogul who makes money off of down-and-out citizens of this country. There was no investment made into that citizen, and there is no remorse when they walk out of their casino penniless. I'm not at all impressed with a man who is using funds from the down-and-out in an economy such as this to help run his campaign for President. Oh, yeah, his moral character is so upstanding. Of all the candidates, he has impressed me the least these past few weeks when it comes to ethics and moral character. To end his long list of ethical and moral doings, his 2nd ex-wife spoke of his wanting an open marriage relationship. I believe people can be paid to say such things and yes some will take the money and run with the lie. But let's review the case. Gingrich divorced her COINCIDENTALLY just two months after she was diagnosed with multiple sclerosis. What a sweetheart he is. Her physicians told him she would need to keep her stress levels down. I'm not sure someone with multiple sclerosis could physically please a playboy like Newt. He strikes me as someone whose social status would be affected by a wife with a chronic illness such as multiple sclerosis. Add to that the stress put upon 1st ladies of any politician and he could be out a job. Far too many politicians and citizens in this country expect to see a healthy trophy wife at a politician's side. That pretty much sums up my opinion of Newt at this point. I haven't checked yet, but I suspect the two daughters coming to his defense are from his first wife who probably suspected that Newt was having an affair with the 2nd wife. Though Newt claims his 1st wife, Jackie, was the one who asked for the divorce, the court records actually show that it was Newt who filed. His wife's response to his filing, "Defendant shows that she has adequate and ample grounds for divorce, but that she does not desire one at this time." Newt's spokesperson responded that while it may have been Newt who filed, it was Jackie who wanted the divorce. I would have to say, "Let the evidence speak for itself, Newt." No doubt Newt's first wife is not going to buddy up to his 2nd wife for whom he likely dumped Jackie. If the diagnosis of multiple sclerosis played any part in Newt's decision to discard his 2nd wife, then I would suggest to you that Newt is no more pro-life than Hitler. It is the same mindset that devalues a human being with an illness that also devalues human beings of another race, religion or disability. If you don't think this will play out in his leadership role as a President, you are sorely mistaken. He is more likely to express these moral and ethical behaviors if he becomes President because he will be much harder to touch. I would expect him to express them covertly so he can maintain a likeable, though false, public appearance. I would sooner have Bill Clinton as president again than vote for Newt Gingrich. I think Newt would be very enjoyable during random intellectual discussions and I would invite him over to watch the Superbowl, but he is not a protector of the downtrodden. We have too many downtrodden, jobless citizens in this country for me to put my faith in Newt.

Guess which political candidate's one and only and current wife does have multiple sclerosis? Well, that would be Ann Romney, Mitt's wife. If you want a candidate that treats women with respect, look for the one without a record of cheating and who didn't dump his wife shortly after a multiple sclerosis diagnosis. You might think I feel this way about Mitt because I live in Utah. Wrong. I feel this way because my entire blog has been devoted to the proper diagnosis and treatment of Lyme disease and any other disease or condition with inadequate medical care. I have seen how insensitive, selfish people treat others who have poor health. I can empathize with the struggles women in particular go through when they are ill. Though we shouldn't, many of us devalue ourselves when we can't function at the level of a healthy woman. We certainly don't need leaders who perpetuate those feelings. We need leaders who find value and potential in all human beings. The fact that Mitt has been married to one woman who has multiple sclerosis and has no record of cheating, tells me that he has respect for women and empathy for those who struggle with illness or disability. The best thing you can do for your own children is to treat your spouse with love and respect. One of the issues that concern the public in regards to Mitt is his "dodging" the issue of releasing his tax information. Could this be a problem? Possibly. But I think it's odd that because Newt has released one year of taxes, 2010, that makes him legitimate. Really folks? You are convinced from one year of Newt's taxes that he is fully honest? Do you know how many people claim a vacation as a business write-off just because they drove by an office affiliated with their business dealings while on vacation? There is no line on a tax form that requires you to prove that it was actually a business trip and not a vacation. Politicians are probably the very best at hiding tax indiscretions than any other citizen in this country. They know from the time they first set their feet in political waters that every move counts and every negative move that can be covered up should be covered up. I for one will not base whether a president is honest on his taxes. In fact, I will likely put no emphasis on tax returns because I take so-called "honest" tax returns with a grain of salt. I think the phrase "honest tax return" is an oxymoron. If you think these politicians are squeaky clean based on tax returns, you are naive. When it comes to tax returns, I'm more likely to think all politicians have fudged in one way or another and I would lump at least 50% of U.S. citizens into that category as well. Revealing tax returns will not necessarily reveal a lie in the tax preparation. One of the reasons Romney may be questioning the right time to reveal his taxes is based on a 10% tithe he pays to his church. This tithe is voluntary, but his revealing that to the general public will have some up in arms. Most of us would consider it an exceptional quality when someone CHOOSES to donate 10% of their income to their church. But this is politics which tends to bring out the worst in people. We will no doubt hear the ridiculous accusations that if he gives 10% of his earnings to his church that he will somehow try to give government money to his church as well. This is what some will actually believe and others will then join the mass hysteria. I suspect you will find that Mitt Romney donates more of his time and money to charity than any other 2012 republican candidate. Don't forget that it was Mitt Romney's father who was the first politican to release his income tax information to the general public. He released a full 12 years. Gingrich has only released his 2010 taxes. And to that, I say whoop-de-doo Newt. I suspect that it is not because Mitt Romney has something to hide that he has not yet released his tax information. I think there is a strategy going on here. As long as the other candidates continue to focus on that one issue, they will stop looking for another issue in their attempts to dethrone Romney. I believe Romney wants them to continue focusing on his tax returns. When it comes to Florida, I think he is going to release his tax returns just at the right time so that the other candidates will be scrambling for something new to bring down Romney. We would all like to believe that candidates win solely on their own merits, but that just isn't true. They win these races with a huge amount of help from their camps who strategize everything from the clothes they wear to precise words they use during the campaign. It's not necessarily a bad thing. If a good strategy helps one to win the primary, then certainly that skill can transfer to the whitehouse and be beneficial when it comes to running the country and working with foreign leaders. As citizens it's our job to do the research and decide for ourselves what is truth, what is strategy or what is both truth and great strategy.

Last but not least, Ron Paul. I've decided that Ron Paul is the Republican Jimmy Carter. I had heard many things about Ron Paul which made me dislike him. But after watching the debates, I actually like this guy. I don't agree with all of his opinions, but he's very likeable. Jimmy Carter was a very likeable guy, he just made a terrible President. I believe that Ron Paul believes in what he is saying. I believe he is passionate about what he says. I believe he is intelligent and has had a lot of experience, but I believe he is naive. He strikes me as honest. He strikes me as someone who can control his emotions appropriately. I disagree with his foreign policy. I don't believe because you play nice in the sandbox that everyone else will play nice in the sandbox. That's a Utopian viewpoint. I find myself agreeing halfway with some of his statements. He tends to be too extreme. Though he's not timid, he appears timid and that can be a negative. He tends to focus too much on the U.S. so as to make us a world of our own, and that just doesn't benefit us in the long run. We need good foreign communication and allies to remain a superpower. That being said, I wouldn't be terrified if he were voted President. I would still feel hopeful that he could bring about positive change. For now I am in Romney's camp. His 25 years of business experience and success are essential for this country at this time. We need someone who can run the largest business in the world, the U.S. Government and the only candidate that has the proper qualifications to do that is Mitt Romney. Notice how Romney pays close attention to what each person in the debate is saying. Notice how he looks at people in the eye, he listens intently and does not seem intimidated by them. Notice how he acknowledges the positives of each of the candidates. This is a strong leader who will listen to ALL sides of the story in order to make the best decision for our country and our people. I'm in Romney's camp unless something comes up that changes my mind. My 2nd choice is Santorum and third is Ron Paul. As much as I would love to pick Newt's brain, he is not the man to run our country. There is too much self-indulgence in his personality.

The Ongoing "Not Sure What You've Got" Saga....

2012-01-11T22:01:00.001-07:00

So I've been busy running my father to physician appointments and my children to their appointments, myself to my appointments, and it seems things haven't slowed much since before Christmas. I think I'm finally on the down slope for a bit, so I'll take a moment to update. My father was diagnosed with Lewy Body dementia. While he was here, (in town that is) I was able to take him to my metabolic geneticist. I was hoping that my doc might find a connection between my symptoms, his symptoms and both of my sister's symptoms.

My doctor referred us to additional doctors, a genetic counselor and an oncologist at the Huntsman Cancer Institute. She felt a workup looking into Multiple Endocrine Neoplasia might be in order due to the family history. I expected nothing to come from it, just the usual, you've got some interesting history, but not enough to be special enough for us to care to help you.

That was not at all the response we received. The genetic counselor and the oncologist are two of the nicest professionals I have met. I have really gotten lucky with my Lyme doctor, my metabolic geneticist and now these two. After reviewing our family history, they stated that it was "significant" for both a hormone related disorder as well as cancer, though the types of cancers we have had are not likely to be related to the hormone disorder. They want records from my sisters so they can further review our case to help us narrow down the probable diagnosis so we can take the proper genetic test.

I don't think I've left an office feeling as validated as I did when I left their office. They were able to make me feel validated, while at the same time not yet knowing a diagnosis or for certain that they could provide a diagnosis in the future, but they gave me hope.

They took my blood and my father's blood for a study. Wow, you mean I'm important enough that you want my blood for a study? It was entirely optional on our part and at no charge to us. They took my blood because I have had acral lentiginous melanoma. Melanoma makes up 5% of skin cancers. Acral makes up 4% of those 5%, yet Melanomas are responsible for 75% of skin cancer deaths. They took my father's blood because of his macroadenoma which was removed in 2009. They stated that one pituitary tumor in a family is rare, but to have two tumors in one family is even more rare. They know of 100 to 200 families who have had one pituitary tumor in two different family members.

I told them my 2nd oldest sister was diagnosed years ago with a prolactinoma. The really interesting part came when I told them my oldest sister was recently told she has a cyst on her pituitary. They perked up even more than they already were and wanted a copy of that report, ASAP. If there were actually three pituitary tumors in our family, the red flags would by flying off their masts and into an ocean of genetics. The medical diagnoses, labs and reports are the map leading us to the hidden treasure. Arrrrgh, Matey! I hope it's easier than finding pirate treasure.

I know I shouldn't get my hopes up that this mystery will be solved once and for all because the rug has been pulled out from under me so many times. But I think I'm finally at the stage where I'm used to having the rug pulled so I can pick myself up, dust myself off, and carry on with life until the next clue comes along. I've accepted if another clue doesn't come along, I will learn how to cope and how to adjust as my symptoms deem necessary. If there is a genetic cause to any of my symptoms or the remaining symptoms after Lyme treatment, I really feel they will find it. I do not regret getting Lyme treatment. The treatment improved my symptoms greatly, and it was the Lyme doctor who started me on the path to the right physicians who led me to these two professionals. Without the Lyme doctor's help, I do not believe I would have gotten this far. She has been very vigilant in making sure that symptoms that did not go away with treatment were looked into. She has an eagle eye when it comes to your symptoms. And I'm not sure which came first, the chicken or the egg. I do not know if Lyme caused a genetic malfunction or if a genetic malfunction created positive Lyme titers, so I have no regrets.

My Lyme doc doesn't hop over dollars to pick up nickels, as my husband's grandparents would say. She will pick up dollars and nickels both because she knows that nickels add up in a diagnosis. I can't say enough about the treatment I have received from my Lyme doctor. I restarted my antibiotics last week as I have noticed a downshift in my health again. I want to cover all my bases while I continue to push forward with this detective work. At the very least, the Lyme treatment has helped my immune system function better while we figure out this mystery.

Someday I hope they will be able to say, "This is what you have and we KNOW it because we can see it right here in your genes," and my children will not have to reach my age and go through this long mysterious process with physicians and the same emotional degradation that comes along with it. If this disease -- whatever it may be -- had not brought me to my knees, I would have ignored it as best I could and carried on as best I could, but it did bring to my knees. I won't let it bring my children to their knees. I don't want them to have to experience that kind of pain, both physical and emotional, if there is a way to reduce it or avoid it altogether. It's not just about me. It's about my father, my sisters, my children and other family members who don't know yet that they are on a highwire. So that's the update for now.

Lyme Doctors in Utah

2011-12-21T18:26:00.002-07:00

If you would like the names of doctors who treat Lyme in Utah or Colorado (the location of my Lyme doc), please send me your e-mail address so I can respond. I prefer not to put the names on my blog. Comments are moderated before they post to the blog. I never post comments that I am asked to keep private so your e-mail will not appear on my blog.

Lyme, Blah-De-Blah-Blah

2011-12-19T00:24:00.001-07:00

So after going through my semi-denial Lyme stage where I was hoping for a doctor to be able to explain some other cause of my symptoms, I'm back to accepting that it's Lyme. I have to admit I wanted to fantasize that they would make some magnificent discovery and tell me I had this or that and here is the treatment! Ha...ha...ha! After all, it's immediate validation from a physician if they can find another cause versus this long drawn out battle we have with Lyme disease.

I still have a carnitine deficiency as my metabolic geneticist has confirmed. She just can't confirm how I got it. I'm fairly certain the Lyme did it. I have to continue my carnitine for the rest of my life unless by some weird miracle my carnitine decides to normalize. It hasn't normalized since I first found out that I had the deficiency so I'm not crossing my fingers.

I'm still doing a quadrillion (that's a number, you know) times better than I was pre-Lyme treatment. I attest that it was the Lyme treatment that brought me to the functioning state that I am today. I'm not perfect, but I can function, and that is what matters most to me now. I would like to be 100%, to be able to exercise at will and not worry about muscle pain or heart attack, but I would also like to be able to fly by flapping my arms and eat Krispy Kreme donuts at will without gaining a pound...not gonna happen.

In fact, though I still have my days where I feel completely robbed of my physical health, I read back to three years ago and I've already forgotten how horrible it was back then. I don't know how I survived emotionally when I consider the physical pain I was in or the emotional pain the Lyme was causing. I'm so grateful to be at the stage I am today even if it turns out to be chronic. I can clean my house and make dinner and go to the grocery store. I can still remember what an effort it was to go grocery shopping because it took so much energy out of me. I remember the joints in my hips, knees and feet aching so badly after an hour at the grocery store and my hands and feet burning like they were on fire and swelling, and wanting to just get home and climb into bed and lay there, sometimes for a day or two just to recover from that one trip.

I remember looking at other people who seemed so normal and being so jealous that they could function as a wife and a mother. I had so many sleepless nights back then, tossing and turning because of the pain on every part of my body, but I'm here today to say that the treatment was worth it. I don't know what I will be presented with in the future, but I know for now that I'm able to function much better.

So for those of you who are just beginning this battle, hang in there. There will come a time when you can look back, and though you may not be 100%, you will be able to say that your life is valuable and that you are happy to have recovered even a small portion of your health.

Something that hasn't changed since I became sick is that I still use a totally different comforter on my bed. I finally understand what those fibromyalgia patients were talking about when they referred to a fibromyalgia blanket. Back when my entire body felt bruised, the weight of my comforter would hurt my body, so I began using a fluffy-type comforter. I don't think it can be explained unless you have had this kind of pain. For some reason certain comforters/blankets feel better against your body. The heavier comforters hurt your muscles. Hard to explain, but if you have this symptom, try a different comforter/blanket. You will never go back to a heavy one again. Flannel pajamas really feel good on those painful muscles. Just an odd tip I thought I would pass along.

Merry Christmas and Happy New Year my Lymie friends and friends of Lymie friends and so on.

Just Pretending

2011-12-11T16:39:00.000-07:00

So for the past couple of months I've been pretending -- pretending it is anything but Lyme. Unfortunately, all the doctors can come up with are the various odd lab tests that don't form a picture perfect puzzle in their oh so picture perfect clinics. I'm speaking of those physicians who follow the IDSA guidelines for the diagnosis and treatment of Lyme of course.

I have positive Lyme titers and now a positive carnitine deficiency. That is certain per my lab tests. My father was recently diagnosed with Lewy Body dementia. I was able to convince the neurologist to test his carnitine levels. Primary carnitine deficiency is genetic so one would think my father's labs could appear similar. He tested it begrudginly. My father's carnitine levels are almost twice the levels of mine. In other words, he's great as far as carnitine levels go. This only makes the carnitine deficiency more confusing to me as it makes me believe that something -- other than a genetic cause -- has brought this on. Yet still the only positive test for any type of disease has been my Lyme test.

I wanted to ignore it and hope for something else to be the cause. After all, something else might provide a better treatment and possibly a cure. At the very least, it would provide me the validation I so want from physicians. You know, the one that says, "Wow, you are sick," and you go, "Wow, I know that," (using, of course, your most bland voice possible). I have been ridiculously fatigued this past week. I got a lovely migraine for a couple of days and an upset stomach. Oddly enough, this was just after my flu shot. I have always believed you don't get sick from the flu shot, but now I'm becoming a skeptic. I can hear a beat in my head quite often, like my blood pressure rising and just pulsating in my head. I don't mention it to doctors because it's the least of the worst. I'm still doing so much better because of my Lyme treatment. I can function much better. I did go back on my antibiotics recently because I felt I was slipping a bit. I'm too tired to write now. I shouldn't take a nap since it's 4:30 pm but I may have to. This means another late night and more fatigue tomorrow, yuck! I have more to write but sleepiness is overcoming me so I'm out....

Aneurysms and Lyme

2011-09-29T15:03:00.003-06:00

It's been a crazy month. Yesterday my sister (the one who tested positive for Lyme) was admitted to the hospital. She couldn't breathe very well. They thought she had pneumonia but after doing a CT scan found she only has bronchitis. That's not all they found. They discovered that she has a dilated thoracic aorta. They are sending a surgeon from a bigger hospital over to review her case to decide whether or not to perform surgery.

I happened to find this out just after leaving my surgeon's office for a follow-up on my dilated aorta. Of course this surgeon said exactly what I expected. He downplayed the fact that it was 3mm larger. I'm sure he thought he was making me feel better by doing so. I already know they won't do anything until it's 5cm or larger so I wasn't panicking anyway. Mine is 3.8 cm. He also relayed a story to me that one of his patients has an aneurysm that is 5.5 cm and does not want the surgery even though it is recommended, but his aorta hasn't changed size for the last five or so years. I suppose that is supposed to make me feel better. Okay, dude, whatever.

So the surgeon reviewed my sister's case and thinks the radiologist made an error. He felt she may have a mild dilatation but wasn't sure. How does a radiologist make that kind of a mistake? Even I can now read a CT scan. I can plainly see the dilatation of my aorta. My son's CT scan looks perfectly normal in comparison. His aorta is much smaller than mine. I just can't comprehend how a radiologist could have made an error that significant. I don't know who to believe, the radiologist or the surgeon. I thought radiologist's opinions trumped surgeon's opinions when it comes to reading x-rays and scans. Hmmmmm.....

After leaving my doctor's office and getting the information about my sister, I hardly feel better. I simply feel like I always did, that too many doctor's form opinions about patients that bias their medical judgment. Any time a physician forms an opinion about a patient, he or she has to take great care not to let that personal opinion get in the way of sound medical judgment. I don't know who to trust any more.

Adrenal gland disease or Lyme Disease?

2011-09-24T19:48:00.001-06:00

My second cortisol test, the 8am fasting cortisol, was also elevated. So now I move on to the 24-hour urine cortisol test.

There is a picture starting to form in my family -- my two sisters, myself and my father all with adrenal issues. One of my sister's doctors believes we may have a familial problem which is related to our adrenal glands, possibly familial hyperaldosteronism Type I though Type II would be more consistent with our symptoms since none of us had high blood pressure in childhood. I am just now getting close to the point where my blood pressure is considered high and I'm sure my weight gain has not helped.

Both of my sisters were diagnosed with hypophysitis and along with that one of those sister's was diagnosed with hypoparathyroidism which is related to having her thyroid removed due to hurthle cells. They were not cancerous, but removal is recommended with those types of cells as there is a high risk of it becoming cancerous. She also has what is called a CRF-ACTH Defect and hyperaldosteronism due to stress. Her hypothalmus does not send the proper signals to her pituitary which in turns causes her to be resistant to ACTH. Stress in all of our cases makes the problem worse because of the issues it causes with too much cortisol or lack of cortisol.

We are sending our medical records to her doctor in Tennesee in hopes that she may be able to solve this mystery once and for all. So that's where it stands now.

The metabolic geneticist believes I am a carrier for Primary Carnitine Deficiency. This can't be passed on to my children, however, unless my husband also carried the gene. I believe they are in the clear as it would be highly unlikely that he is also a carrier.

It probably sounds so pathetic for anyone to read this blog. If I read it, I would probably think the author was a hypochondriac.

The last thing I wanted to share is something I've learned throughout this ordeal. I've learned to be careful who you tell because there are those who will label you sick or broken. You may just label yourself that and be thinking, (like I often do), that people consider you less important as a human being.

I worry sometimes that parents will be concerned about my children dating their children because we may be considered "high maintenance" or "sick people" though I'm an extremely low maintenance individual. I worry too much about things I have no control over. I need to remember that if people do ever behave that way towards myself or my family that I don't want them in my life anyway. I have a problem with wanting everyone to like me when I know logically that isn't even realistic for anyone. So what I'm trying to say is this, if you want to be an open book, remember that some people may treat you differently. Remember that you might be the only one feeling that way. If you're going to give yourself a guilt trip over sharing too much or it's going to affect your self esteem then find a way to vent so you can avoid overthinking or having others overthink what you are experiencing. I don't know if that made any sense, but I tried. =)

Lyme & Right Bundle Branch Block/RBBB

2011-09-19T13:50:00.004-06:00

Today I am writing before I have full information at this time, but I need to vent. So keep in mind that I do not yet have final results from my son's physicians and I may be jumping the gun. My son has been complaining of chest pain lately. He's been working out more lately. I noticed he also has a large 3-inch diameter protrusion on the right side of his chest near his clavicle.

Our GP gave him an EKG as well as an x-ray. The x-ray showed nothing, but the EKG indicated bradychardia and a right bundle branch block.

So today we went for a CT scan and an echocardiogram. The CT scan results did not show anything though I personally don't think the quality is very good. I have the CD. It's definitely not what you get from Accuscan. The quality at Accuscan was impeccable. I was surprised that the results were available on line by the time I got home 25 minutes later. I wonder how long the radiologist really reviewed them. Was it really that easy to review? He made no comment on the protrusion on the upper right-hand side near his clavicle, though it's obvious on the outside to anyone who looks at it or runs their hand over it.

The echo did show a right bundle branch block, but the report is not on line yet so I have no idea what else it may have shown. The disturbing thing is that we had an echo done a year ago and this right bundle branch block was not noted then. So either it was missed a year ago or it's new. If it is new then it is of concern.

Late Lyme does cause heart block of various degrees. I'm not going to mention the Lyme until they have run all the tests they feel they can. When they say to me, "We don't know where it came from," then it will have to be chalked up to Lyme until proven otherwise. It just makes me angry that my son now has a possible heart condition and it may be due to Lyme disease.

If not Lyme, someone needs to figure out what is going on! I'm angry that for so long I have told physicians about this particular son and that he just didn't seem healthy. He had some strange illnesses and labs in the past that were just written off as a "virus," or "we don't know," or "come back if a family member has a stroke or vascular instability."

So now a few years later I present with vascular instability. My descending aorta has grown 3mm since my CT scan two years ago and is now at the upper limits of normal. That's the average growing rate of a dilating ascending aorta on it's way to eventual dissection or rupture if not repaired. If it keeps up that pattern, I will be on the operating table in a few years to try and prevent a rupture.

And one more thing, I mentioned to my GP that I am gaining weight and I don't eat that much. I didn't think it was normal, but both times I mentioned it to him, he just said to cut my caloric intake. He assumed my exercise level had dropped significantly and thus my caloric need had as well. I watched my caloric intake but fell off the wagon after a week.

In all honesty, I don't eat much. I again force myself to eat at times that I'm not hungry because I'm afraid of the carnitine deficiency. My appetite has been lacking for a while lately, and to top it off I caught the neighborhood cold virus which further decreased my appetite because I can't smell.

After finding out about my two sisters being severely deficient in cortisol and DHEA, I asked my GP to run my DHEA, cortisol and ACTH again. Because of my current symptoms, I didn't expect him to find a low cortisol. I did expect he might find a high cortisol and a low DHEA since my DHEA has been low in the past.

Indeed, I have high cortisol! DHEA and ACTH were normal, though on the lower end of normal. This was no surprise to me. I knew my weight gain was abnormal, but I don't have my second cortisol test back to confirm. I just really, really, really want it to be my cortisol because dieting stinks. =(

You know who seems to be the most healthy in our family -- our daughter who went through chemotherapy at two years old. Hmmmm...out with the old and in with the new? Maybe chemotherapy cures more than cancer.

I don't understand the need for a patient to have something serious happen before a doctor will consider it a worthy cause. I suppose there is more glory in saving someone from near death than there is in preventing a near death occurrence at all. Grrrrrr....those egomaniacal, narcissistic...I'm done for today. =)

Another great blog to check out...Feeling Lymie. I love it when people are honest and can share the ups and downs of being sick even when the downs aren't always pretty.

***The Update on 9/20/11....So we were told both came back normal. This is odd because I sat there and watched the echo and watched as the tester showed me the wave seen in a right bundle branch block, but the echo report made no reference to an RBBB. This happens to be the same hospital that missed my dilated aorta on their CT scan. It does make you wonder, but what can you do? So my son has the protrusion and an EKG showing an RBBB that has never been seen before and now that the CT scan and echo show normal, we do nothing. It doesn't answer the question of why he has this protrusion, nor does it answer why the EKG showed an RBBB, yet there was no mention of it on the 1st echo a year ago or the 2nd echo yesterday. So frustrating! Like I said, I jumped the gun in speaking, but I'm not convinced they aren't overlooking something.

Hypophysitis Sisters

2011-09-02T13:26:00.000-06:00

It looks as though I may have one more area to delve into in this mystery. Both of my older sisters were diagnosed within a month of each other in two different states. Neither knew the other was seeing an endocrinologist at the same time. They were being tested for Addison's Disease. Both of them have low DHEA as well as low coritsol levels. One requires Vitamin B12 shots or nasal spray and the other one has taken Vitamin B12 because she said she always felt better when she did. Both had cortistim tests, ACTH stimulation tests. Both were told it was not Addison's. One was diagnosed with pituitary hypophysitis and two weeks later the other was diagnosed with the same autoimmune disease.

Addison's disease was one of the first diseases that came to mind to both myself and my general practitioner when I first became ill. He ran the tests, but only my growth hormone was elevated, and it was very slight. It was not significant to raise any alarms. Since then, however, my DHEA has dropped below normal. My last test showed that it was 10 points below normal. This is actually far above either of my sister's levels of DHEA.

So I guess my next step will be to ask my general to rerun those tests and probably see an endocrinologist for a workup for hypophysitis. I'm still working with metabolic geneticist as I'm not sure hypophysitis would explain the carnitine deficiency. It would explain some of the other symptoms, so perhaps I have two things occurring at once or perhaps one can lead to the other. Who knows?

Viral and Bacterial Olympics

2011-08-27T14:12:00.000-06:00

Thought I would check the CDC Morbidity and Mortality Weekly Report (MMWR). Ending August 26, 2011, yesterday, these are the reported numbers of Babesia to the CDC thus far for this year, 314! That may not sound like a lot to you, but the CDC doesn't even list the previous years numbers because there wasn't a need to track this little known bacteria transmitted by ticks. It's on the rise! Currently, one person per week will become infected.

Babesiosis gets a 2nd place ribbon with the 1st place trophy going to a lovely gastrointestinal illness called Vibriosis. Vibriosis can be easily prevented.

WHAT IS VIBRIOSIS?

Vibriosis is an intestinal disease caused by small bacteria called vibrio. Vibrio are found in fish and shellfish living in saltwater and in rivers and streams where freshwater meets saltwater. Although there are several types of vibrio, Vibrio parahaemolyticus [vib-ree-oh pair-uh-hee-moh-lit-uh-kuhs] and related species are the most common in the northwest.

The simplest way to prevent it, is to make sure your shellfish are put on ice immediately and at the right temperature to prevent bacterial growth. Cooking them thoroughly will not always prevent the illness.

Chlamydia of course reigns supreme. Can you picture Chlamydia standing on a winner's platform with his hands cupped together giving us the old winner sign as he moves his hands from right to left above his head? 809,675 cases in 2011 thus far. Ick! I feel a little better knowing that Utah only contributed 4,151 of those cases -- ONLY.

Top contributors were California, Texas and Indiana. You may not want to join E-Harmony in those states, ha ha!

What's most annoying to me is that the STAAR ACT -- an act supported by both Jim Matheson of Utah and the Infectious Diseases Society of America, actually mentions that they would like to have more money for up and coming diseases like Dengue Fever. There has been a total of 64 cases of Dengue Fever reported thus far this year. Seriously? Most of these cases are picked up outside of the U.S. on travels to other countries and our politicians and IDSA physicians want our government to finance research on Dengue?

Ehrlichiosis, another tick-borne disease has 461 cases reported this year thus far.
Lyme Disease thus far for 2011, 16,376 reported U.S. Cases, 549 per week.
West Nile virus for 2011, 77 total.

Have to wonder why it is you keep hearing about West Nile Virus in the news while these other tick-borne diseases are being ignored. What is provided to the media is what they will show. It's our CDC and our Infectious Disease doctors who are providing this information to the media. Why are the leaving out Lyme disease and the other tick-borne diseases that are on the rise? Why are these diseases on the rise if they are difficult to catch and easy to cure?

The answer is common sense. The public is being left in the dark by those who are supposed to look out for our best interests.

REMEMBER BOYS AND GIRLS...IF YOU SEE A TICK CROSSING THE BORDER INTO YOUR STATE, ASK FOR IDENTIFICATION. IF THE TICK DOES NOT HAVE A VISA OR PASSPORT, THE TICK MAY NOT ENTER YOUR STATE. IF THE TICK SHOULD ATTEMPT TO CROSS THE BORDER ON A BIRD, DEER, MOUSE, VOLE OR HUMAN, REPORT IT TO THE PROPER AUTHORITY. TICKS ARE REQUIRED TO OBEY THE LAW SET UP FOR THEM BY THE CDC AND THE IDSA.

Someone Call Scooby-Doo!

2011-08-17T20:13:00.000-06:00

I'm still a mystery. The only thing I have going for me now is that I have legitimate, objective signs that something is indeed wrong with me. I picked up my carnitine serum labs yesterday and the urine carnitine labs today. I'd already done enough research to know that if my urine carnitine levels are within normal and my serum carnitine levels are lower, it points to nowhereland. I said in my head as I was driving in the car, "Crap! I'm a mystery! This doesn't make sense."

When I checked my e-mail from the doctor, she basically said the same thing, "The numbers don't really makes sense." She's right, at least according to everything I have read. They don't make sense. They are there on paper and they don't make sense. It's a treasure map without an X.

I spilled my guts in an e-mail back to her with tears dripping down my cheeks. I told her symptoms that may be related but actually began before the time I was slammed in 2008. I told her about an odd dent in my calve that hung around for a few months, then up and disappeared. I told her during physical therapy that my calves would burn after doing about three "calf" raises. Of course they would! Anyone lifting a calf three times could get burning! Ha ha! The picture of me lifting bovines with my calves is entertaining, but alas we all make spelling errors.

I let myself be vulnerable for a little bit and told her I quit seeing specialists after a while because no one could figure out what was wrong with me, and I didn't want to be labeled a hypochondriac or told to see a psychiatrist. Then I ended it with a sort of pleading and said I hoped she could figure it out, but if not that she could lead me to the proper specialist.

I hope she understands where my mind is at right now and that I'm fragile, but more importantly that I'm honest, that what I am telling her is happening is really happening to me and that I'm desperate for her help. We shall see. At the very least, it provided me with my crying outlet for the day.

I'm back to Lymeland again because I feel like I can't rule that out until I can rule something else in. I hate Lymeland. It's the vacation from Hell. It's a lonely, desert island.

I called my oldest sister in the midst of typing this. I now have two sisters with low DHEA and low cortisol. I got nauseous about ten minutes ago. I grabbed a couple pieces of bread and went to lay on the couch. I'm getting hot flashes for some reason. I'm still nauseous but hoping the bread is going to make it go away. I almost feel like vomiting so I guess I'm ending this entry for today.

Carnitine...or Fleshitine as my Daughter Calls It

2011-08-15T19:10:00.000-06:00

My daughter tells me carn means flesh, therefore my carnitine pills are really fleshitine. I recommended she try one of the over-the-counter health supplements because she complains of growing pains quite often. I figured it couldn't hurt and maybe it would help. It's a no go. She says she will not eat flesh. She's a very funny girl. She loves to joke with me and I appreciate it.

I want to tell you what I read about my latest carnitine labs on line and I want to tell you that I think it means something is definitely wrong, but then I remember back to tests that I thought were messed up and the doctor said, "Oh, you read that wrong. You read it this way." I'm afraid I might be reading it wrong.

But...since I am who I am I will tell you my interpretation with the clause that I could be reading it wrong. I was asked to stay off the carnitine for one month and retest. The first carnitine test I had was low. I started supplements and the 2nd carnitine test still came back low a few months later. Then my new doctor redid the test in June while I was still on supplements and I was still low. She felt we could get a more accurate picture if I were to quit for one month and then do the test. I did just that.

I was fine for about 1 1/2 weeks into it. I even thought, oh wow, maybe the carnitine was just a placebo effect.

Then began the brain fog and forgetfulness. My muscles started hurting and by the fourth week, I felt like I was in a full-blown fibromyalgia and brain fog. At this point, any type of exercise would not be touched with a 10-foot pole. I didn't make it to church the 2nd week. The third week my children weren't feeling well and I stayed home with them, relieved that someone else had the excuse. The third Sunday I felt I needed to go. So I did. I sat through three hours of church on the nice, soft chairs.

The muscle "bruised-like" pain from the pressure of one leg crossed on the other was back. By the end of the third hour whatever muscle was near the tailbone was so sore I had to keep adjusting to try to alleviate the pain.

I started getting brain fog, not being able to wake up easily, and then came that feeling of hopelessness. The "I can't live like this," kind of hopelessness. It was that fourth Sunday where I thought, this could be the result of no carnitine! The next day I went down and had the labs performed. I was so miserable by that time, I came home immediately and popped the carnitine. I noticed a difference within two days and by the fourth day, the difference was SIGNIFICANT. I had energy again and the muscle pain was diminishing.

As for the labs:
June August Normal Range for my age
Total Carnitine 30 26 34-86
Free Carnitine 21 22 25-60
Esterified 9 4 "By Report"
Ester/Free Ratio .4 .2 "By Report"

If I'm reading the information correctly regarding the Free and Esterified as well as the ratio, then the ratio appears in the "normal range." But those numbers come from the ratio of free (what I can use I think) to esterified (bound) carnitine. "total" carnitine values (22 free + 4 esterified = 26 total).

If this test works in a similar way to the thyroid then I am assuming that of the total carnitine I have available, my body is doing it's job properly in the release of free carnitine for my body to use. But if the amount of free carnitine released for my body is based on an already low overall total carnitine level, then I am still not receiving what I need because the storehouse doesn't have enough to release to the delivery boy. So the delivery boy who carries the free carnitine package for my body to use, is only able to deliver a partial package. If the total carnitine went up, then I think the free and esterified would also rise together and the ratio would still be within normal limits because those values would rise together.

So I'm saying that I think the storehouse has a shortage of carnitine but the delivery boy is still doing his job delivering what the storehouse makes available to him. Ha ha! So what does that mean? I DON'T KNOW.

I'm sitting patiently waiting. The urine carnitine hasn't been posted on line and I'm hoping they did not mess it up because it won't be accurate if I have to do it again. I'll have to go another 30 days off the carnitine. That's what's happening in Fleshland today.

The only title that comes to mind for today is Pffffft!!

2011-08-09T13:08:00.002-06:00

I got an e-mail from the doc on Friday. She said I don't have Fabry's based on the blood test, though she admits women with Fabry's can have normal blood enzyme levels. It's the lack of family history of Fabry's that makes the doc feel it isn't necessary to run the gene sequencing.

That's frustrating -- frustrating because I wanted my illness to be something that is not controversial in the medical community -- yes I'm guilty of that -- and frustrating because I hoped a more clear treatment might be available for a "non-controversial" illness. It's also frustrating because everything I read about Fabry's tells me women cannot be definitively diagnosed without the gene sequencing. It is also believed that Fabry's is underdiagnosed and misdiagnosed due to the lack of knowledge among the medical community regarding Fabry's. So it wouldn't be uncommon -- if that is true -- that a Fabry's patient may present without a family history. An NIH study found that more than half of Fabry's patients diagnosed were not diagnosed based on family history. If Lyme is a "diagnosis of exclusion" then how can I accept it if I can't completely exclude Fabry's?

So I'm left wondering. My husband says I should insist they do the gene sequencing or have someone else do it. My mind says I have put so much distrust in mainstream medical in the past few years that maybe I need to trust that she does actually care, that she is right. That's a big jump for me. I have to convince myself that she actually takes even the slightest interest. I feel like I should carry around a large stamp with bright red ink that says, "REJECTED." That way I can just hand them the stamp the first doctor visit and they can pop it on my forehead and I'll go home.

I'm going back to pretending there is nothing wrong with me. I'm attempting to ignore the symptoms, hoping they will all disappear based on my newfound denial, disguised as optimism. If you pretend hard enough, it will go away, right? If men in India can walk on hot coals and not feel it, I can certainly tell my mind that it is full of steaming hot maneur and I do not have an illness.

I don't want to burn a bridge here with this doctor so I'm just going to wait it out and trust her. She's still looking into the carnitine deficiency, so who knows, maybe something will pan out there.

Is it wrong to tell people who read this blog to never get their hopes up? I want people to have hope, but I don't want them to set their expectations high. It is mentally easier for me to just accept that it is all caused by Lyme, forget about it and move on with life than it is to hope that someone will find something that is accepted throughout mainstream medical and finally validate me just to have the rug pulled out from under me one more time. I feel like I should blame myself for setting my expectations too high. If you expect nothing or less than nothing you will never be disappointed.

Maybe someday I'll return to the Fabry's issue and demand that someone do the gene sequencing -- even if that means I have to pay for it to be done. I see it as paying for a definitive diagnosis of Fabry's or I pay to know that I can rule it out 100% and move on. Either conclusion is worth the expense to me.

"I give up" are the words that keep repeating over and over in my head. "I give up, I give up, I give up." There is nothing worse for me right now than being a medical mystery. If we ever move, I am never telling anyone in my new neighborhood that I've been sick. I'll fake it as much as possible because I'm tired of fighting, tired of feeling broken and looked upon as broken. If it is all Lyme, I'm in the position of having the majority of mainstream medical deny it, which means others will question you as well. If it's something else and I don't have a diagnosis to show what it is, I'm in the same boat.

Like it or not, it's my experience that there are very few people in this world that have the ability to sincerely empathize with someone in this situation. This doesn't mean I haven't met them. There are two people that immediately come to mind. For those whose opinions are difficult to ascertain, I play a chameleon, adjusting myself to their personalities so I don't have to feel rejected. I personally don't enjoy being a burden to someone else, so if I think my being sick might feel like a burden to someone, they aren't going to hear about it. I've shared my thoughts and feelings with some and then felt that I should have withheld because it makes them uncomfortable which in turns makes me feel miserable.

I guess that's why we hold Mother Teresa in such high esteem. If the extent of love, kindness and caring that she showed was such a common attribute in individuals, she would not have stood out. She stood out because few people really exhibit those traits to that extent. I think we all aspire to have those attributes. We all have the best of intentions, but the actual work required to sincerely take on those attributes is overwhelming, even to me. I understand why people avoid sick people. It can be physically and emotionally draining.

It might remind them that they are not invincible. Pretending isn't just a coping mechanism for sick people, it's a coping mechanism for healthy people.

Today was a pity session. "I'm over it," ha ha, sarcasm intended.

Still Waiting...

2011-08-05T15:14:00.000-06:00

I'm still waiting to hear from the doctor on my enzyme results. I called about a a week and half ago and she said results were not in yet. She told me to call back in a week. I waited 8 days. I thought it would appear less anxious if I waited 8 instead of 7 days. I left a message. Two days later I still hadn't heard back so I called again and left a message again. Then I sent her an e-mail to let her know I left some messages and wanted to make sure she got them. Still waiting. =(

You know what's going through my head now? Maybe she doesn't want to call me back. Maybe she thinks I'm annoying. Maybe she thinks I'm a hypochondriac. And then there is a little tiny voice that says, maybe she's out of town, or maybe the results aren't back yet. I want to think the latter two are correct, but past experience makes me doubt myself. So I'll just wait and hope that she calls me today. If not, I guess I'll wait another week or so and call again. I don't want to be annoying. Doctors don't like annoying patients.

It will be two weeks this Monday since I have been off the carnitine. The physician wanted me to go off the carnitine and retest in two weeks. The labs she ran still showed I had low serum carnitine even with the supplements I was taking daily. I didn't notice a difference right away, but as time has gone by, I notice my calves wanting to cramp more at night. My muscles are getting somewhat sore again and my stamina is not as good. I carried four bins of cloth material up from the basement to the 2nd floor and each time I was breathing heavily at the top of the stairs. That was all I did that was strenuous the whole day, and by evening I was sore like I had worked out. I was tired and achey. My arms are getting sore again and weak which makes computer work more difficult. I think this is all related to the lack of carnitine. Oh well, life goes on. I'll just keep waiting and hope someone will someday provide me with an answer.

I'm tapering off the Lyme treatment as I believe the treatment has done all it can do at this point. What is left is a secondary issue. In the future I may have to start the treatment again, who knows, but I'm hoping I won't need to. I want to be free of Lyme, but I will not hesitate to begin treatment again if I begin going downhill. That's all for today. Have a nice day!!

Lyme or Fabry's That is the Question

2011-07-26T13:28:00.000-06:00

Oh the titles I come up with. They make me laugh either because I think they are clever or because they really are stupid. Either way, I laugh at myself.

Still waiting for results of my lysosomal enzyme tests. I'm tempted to call now. It's been two weeks and one day since I submitted the blood. After feeling so rejected by physicians throughout 2008 and 2009, I am afraid to be that annoying, "impatient" patient. Aside from the infectious disease doctor, I don't think any of the doctors intended to make me feel rejected. It's just very easy to feel that way when no one is able to understand what is happening to your body and provide you with a solution. I couldn't help but feel stupid as I'm not one who wants to be the center of attention. Medical attention which could border on hypochondriasis because of the difficulty in diagnosing is the last thing I would ever want attention over. While I'm sure there are worse things, that has to be at the top of my list for things I never want to do.

You're probably thinking, yeah right. You have a blog and you don't like attention. For me, this blog is a bit of a diary of the past few years. When I'm on my computer, it's easy to pull up the blog, add some updates and move on to the next errand. I like being able to refer back and see how far I've come. I can't believe how quickly some symptoms disappear altogether from my mind when they no longer occur. I remember that I was horribly ill in 2008 and yet I can't put myself fully in my own shoes any longer. I figure you don't know my real name so I'm safe from the self-perceived face-to-face criticism I might encounter in real life.

There may be a psychological diagnosis in that statement, I admit, but it has nothing to do with the real not "perceived" symptoms I experience.

So back to the whole reason I signed on today..."House" had an episode of a man with Fabry's disease called Epic Fail. They happened to mention one of the differential diagnoses of Fabry's as being Lyme so it's not too difficult to see why they can be confused. The episode was probably a bit overkill as far as I'm concerned. It makes for good TV though and it was a fairly entertaining episode. So if you're interested you can purchase the episode through itunes. I am still trying to get a copy of an episode on Fabry's, "The Man Who Never Sweat," from Discovery Health, but I can't find it anywhere on line. I probably have to purchase the entire 2nd season from a store. I'm hoping I'll catch a rerun sometime. So that's it. Should I call, should I wait....ugggh!

Fabry's Results

2011-07-14T20:02:00.000-06:00

It will be another week or so before I have results of a lysosomal enzyme test in regards to Fabry's. The sample needed to be shipped ASAP to a Philadelphia lab. The first sample sat overnight so I ran up to the hospital on Monday and gave them another sample. Two more anxious weeks. Hopefully I will soon know if they can put a new name on my symptoms or if the Lyme diagnosis is further upheld by ruling out another disease.

Lyme Disease = The Garbage Disposal

2011-07-07T14:47:00.002-06:00

Still anxiously waiting for my lab results from a genetic doctor. It's driving me nuts. It's been two weeks and four days since I saw the geneticist. I'm so tempted to call and see if the results are in. Maybe they haven't gotten around to calling. I'm afraid to be that "annoying patient." I can at least make it to Friday. I'm building up for a long, "beyond a reasonable doubt answer" to my symptoms as well as a rejection and a "We don't know." Then I will hang my head and walk away quietly and return to my garbage disposal.

I can't say I would be disappointed to leave Lymeland. No one in Lymeland really wants to be there. We are there because it is a place we can go and receive empathy, understanding and we hope a treatment or cure. It's a place where the invalidated go to be validated. I think the Lyme realm is a "garbage disposal." Before you get offended, let me explain what I mean. Lymies are very ill. Some truly have Lyme/Chronic Lyme and some have diseases which mimic Lyme, but they have defaulted to Lyme because no one can tell them what they have. All of these "Lymies" have been cast aside by mainstream medical.

Far too many physicians these days want to herd patients like cattle. We can probably thank the HMOs for this phenomenon. This leaves little time for detective work on their part. You don't get paid for detective work. They get paid for the time they spend with you. Hmmmmm...I'd pay a physician extra to spend time researching my symptoms. It would have been worth it to me. This means only those physicians who truly care about their patients will spend the necessary time to find a diagnosis or treatment.

Those hard to diagnose have been thrown by the medical system into a sort of garbage disposal. I picture a physician at his desk plucking the petals of a daisy as if they were patients, "I love her, I love her not, I love him, I love him not." They go about treating those they choose to care for and don't think twice if you go down the drain. They don't refer you to any specialists or perform any more tests. They just say, "I don't know, here is a pain pill" and that's the extent of their effort.

Where does a patient go with that? Well, to a new doctor and then to another doctor, and another and another and another until you finally find a physician who listens, who believes you and who will make an effort to improve your life. That is where you as a patient will want to stay because you feel validated and cared for, and at least someone is going to try! A doctor who believes or knows you are ill and does nothing further to help you solve the puzzle is not beneficial either.

My third general practitioner in two years and my Lyme doctor are keepers.
These kind of doctors validate you and care for you. If it were not for my Lyme doc, I would never have known I had a carnitine deficiency. The symptoms that lead to this discovery were there from day one in 2008 when I became sick, but only my Lyme doctor put that important piece of the puzzle together. She cared enough to follow through, not only with treatment of my symptoms, but with continued care and testing for pieces of the puzzle that weren't fitting. She was the first to order muscle enzyme testing which showed the deficiency. Why didn't the other 10 to 15 doctors think of this? My general physician treated me kindly while treating my symptoms. Then I had a positive Lyme test, so it made sense for me to see a Lyme doctor. My general still treats me for those issues not related to Lyme.

Lyme mimics so many other diseases. Because of the currently flawed tests, it can neither be proven or disproven by physicians. Therefore it's reasonable that the Lyme community would acquire patients with similar symptoms who have gone undiagnosed -- especially when one tests positive for Lyme disease.

Lyme is considered a diagnosis of exclusion to many mainstream physicians. Is this reasonable? How many tests and physicians must one see before they settle on Lyme? The number of diseases is infinite. While this infinite testing occurs, patients continue to get sicker. At our sickest, we aren't sure we have one more day, one more month, one more year before these infinite tests reveal something -- or reveal nothing. Then after we have gone to infinity and beyond we can call it Lyme and get treatment for Lyme?

What I do know is that any diagnosis that is based entirely on exclusion of so many other diagnoses means those dollars which have gone to Lyme research have been wasted.

Physicians opposing chronic Lyme or Lyme disease without supportive lab results should consider why there are so many Lymies out there. I believe it is due to a flawed medical system which is throwing our money and our patients down the garbage disposal to fend for themselves. Any physician who finds it odd that a patient would go to whatever lengths to find an answer and a treatment or cure for their symptoms is a physician without empathy, a physician who is there simply to make money. To believe you have Lyme after you have gone undiagnosed for so long while sharing so many of the same symptoms is not a stretch.

To believe that one must test for everything under the sun before concluding one has a particular disease is completely unacceptable. This is the result of a flawed medical system and tests, not a flawed patient.

Being slapped over and over hurts. If you can't find a diagnosis at least you can find a place where the emotional pain is lessened. You seek out people who have experienced what you have, people with empathy, kindness and validation. They tend to know physicians who have the same qualities.

With this type of support surrounding you, your spirit is not as broken as your body. We can only deal with one broken thing at a time. We need a strong spirit so we can continue our physical battle.

So I give thanks to all those physicians who have empathy for their patients. You don't need to know everything to be a great doctor. You do need to have empathy and understanding and a willingness to learn and push forward. "Put your shoulder to the wheel, push along!"

It is my opinion that physicians should entirely disregard the phrase, "Keep It Simple Stupid" or KISS as is known in medical school, because sometimes it isn't simple. Someone's life will someday hang on your ability to think outside the box.

When all is said and done, I hold to my position that Lyme disease is underdiagnosed, misdiagnosed, mistreated and tests are terribly flawed.

I thank my Lyme doctor for thinking outside the box and my general physician for always treating me with kindness and sincerity.

The Long Wait...

2011-07-04T12:00:00.002-06:00

Still waiting for my DNA results. I have read some of my lab results. My insurance provider allows me to look at my results on line as soon as they are available. I have to wait for the physician to interpret the results.

My Vitamin D is still low, though much higher than when I first became sick in 2008. I'm anxious for the interpretation and DNA results. At the same time there's a little devil on one shoulder telling me I will face rejection one more time from one more doctor because she's just going to say, "I don't know what's causing your symptoms." I dread hearing that.

I've never felt more rejected in my life than when I became ill. There is nothing more humiliating than going to doctor after doctor and hearing them say, "We don't know."

Here is a list of the tests that were run:

CBC With Diff
Comprehensive Metabolic Panel
Amino Acids, Plasma Quant.
Carnitine, Free & Total
Misc. Sendout (I assume this is the DNA test)
Amino Acids, Random Urine
Organic Acids,Urine

I can see some levels are abnormal, but these are difficult to comprehend. As far as the amino acids go, from what I have read, they have to take all of the levels in plasma and urine and compare them. The amount one has in their blood compared to the amount one has in the urine gives the physician a better of picture of what is going on. These are not easy to interpret without a professional background so I gave up trying to figure out what they mean.

One thing that has puzzled me since I became sick is my consistently high neutrophil count. I have a low lymphocyte count, but a consistenly higher neutrophil count. This fits into the puzzle somehow, I just know it. I'm going to quit speculating now.

Have a happy 4th of July everyone!

Tick Borne Diseases in The News

2011-06-28T12:48:00.001-06:00

Remembering Jack - A father gets a tattoo in rememberance of his eight-year-old sign who died from Lyme disease.

Dickson father of 4 hospitalized following tick bite. This story will show you just how serious ehrlichiosis can be.

Fabry's Disease & Erythromelalgia

2011-06-20T18:55:00.002-06:00

I am posting this because I want others who are suffering with Erythromelalgia to know that aside from Lyme disease there is another disease that can be misdiagnosed as erythromelalgia.

Today I saw a specialist at the metabolic clinic at Primary Children's Medical Center -- yep, I guess they see adults too sometimes. She was really wonderful. Even though I brought my Lyme suspicions, including positive blood tests along, she did not fully discredit me. She neither upheld the diagnosis nor did she treat me as if I were a hypochondriac or exagerrating my symptoms.

The end result of the visit, after discussing the last three years of symptoms and some symptoms occurring a few years before that -- i.e., fatigue after exercise and muscle weakness after exercise -- was a test for Lysosomal storage disease, more carnitine tests, CBC and Vit D tests.

I couldn't recall off the top of my head the lysosomal diseases that I'm sure I had come across in my search for a diagnosis so I wasn't sure exactly which one/ones she was testing for. She told me she was testing for one of them which caused burning in the hands and feet. Wow, I thought, I didn't know there was a disease out there other than erythromelalgia that caused this. When I got home, I typed in those key words, "lysosomal storage disease," and up popped a disease called Fabry's disease. I would have to search the blog to recall if I have ever spoken of Fabry's, but I believe I have.

Why did I know the word Fabry's? Because this is the very disease I first suspected could be the cause of my troubles. I happened to see the Lyme disease test as well and threw that in for good measure when I ordered my Fabry's disease test from PrivateMD. My Fabry's test came back negative, but my Lyme test came back positive. What made me really key in to Fabry's was the popping up of these red dots all over my body. I had mentioned this to so many doctors when I first became ill. After being told over and over and over that they were cherry angiomas and normal with aging, I quit bringing them up. After all, I was still in "she's a hypochondriac land," and cherry angiomas are so benign in the medical community. I shared the negative results with my GP regarding the Fabry's and the positive result of Lyme.

The positive Lyme result distracted further research on Fabry's. Yet with Fabry's disease it is not uncommon for females to test negative on the blood test. Genetic testing has to be performed. This is because Fabry's disease is X-linked, meaning the X chromosome is defective. Females have two X chromosomes, males just one. A female who has Fabry's disease has another X chromosome which can take over for the defective chromosome. A process of X-inactivation can occur. It was once thought that the good X would take over, but now confirmed that in females some of the cells within organs will house the defective X while other organs will house the good X. If a female carrier has few of the defective X chromosomes functioning in her cells, she may experience mild symptoms or no symptoms at all. But if a larger amount of her cells carry the defective X, she can experience symptoms as severe as seen in males. Without a family history of the disease, Fabry's is not a disease that comes to the minds of very many physicians, even with proper symptom presentation. Without a family history, renal failure may be the first indication that a patient has Fabry's disease.

I made no mention of LabCorp testing my serum for Fabry's in 2009 and receiving a normal alphagalactosidsase level. I think she is doing the proper genetic testing that needs to be done. I have to admit that Fabry's fit me to a T back then and it still fits. It is still frustrating to me that the one thing that often clues physicians in to Fabry's is the angiokeratoma (cherry angioma-like) dots. Some pictures are darker purple and others look exactly like mine.

Fabry's is progressive and must be treated! If the test comes back negative, I have excluded one more diagnosis which serves to uphold the Lyme diagnoses. It doesn't explain why I had a low CD57 count or why my sister tested positive for Lyme as well with the exact same banding.

It adds some confusion to the whole Lyme controversy but it doesn't exclude Lyme. Which came first, the chicken or the egg? It will be two weeks before my tests are back so before I go and diagnose myself, I will end this blog. I do want others with erythromelalgia to know that if they have similar symptoms to Fabry's disease, they should absolutely see a metabolic specialist for a workup for metabolic diseases, and in particular Fabry's disease. I don't believe in accepting a diagnosis of unknown origin. Some cases of erythromelalgia can be traced back to DNA defects. Other causes are unknown. Fabry's is misdiagnosed as erythromelalgia and it has serious and possibly fatal consequences, particularly in boys, if left undiagnosed.

Lyme Farewell

2011-05-27T01:00:00.000-06:00

Two days in a row this week I went jogging. Well, I should call it wogging. I walked, jogged, walked, jogged, repeat. The point is, I did it for 30 minutes and I didn't die. The muscle soreness I have today seems to be normal, instead of the exaggerated, "I'm bruised and cramping every muscle" soreness. Aside from some pain in the left hip which felt like arthritis/joint, I did very well. Most importantly my erythro did not act up. My feet were slightly red but did not get swollen or burn, and I was not so fatigued that I couldn't move for two days.

Before treatment, exercise always exacerbated the erythro symptoms, not only in my hands but my feet as well. I do have some very mild asthma which is controlled with a pump which I have to use rarely. I can honestly say that the majority of my pain has left. I am left with some fatigue still in the mornings, but even that seems to be improving.

I'm terribly sluggish in the morning, but once I'm up, I do just fine. I just wish everyone else could adjust to my 9 or 10 am wakings. =)

I still make simple spelling mistakes that I don't think should happen, but they do. I also have some minor recall issues and an inability to multitask as well as I could before, but overall I am a completely different person today thanks to long-term antibiotics and an LLMD. So I'm beginning to say "Farewell to Lyme." It will only be a matter of time before I am able to say I'm cured or in remission, and that is a beautiful thing. Lyme has left its mark but it's not winning this war.

Maybe someday I will relapse and maybe I won't, but I will deal with that issue should it happen.

My goals now are to try and wake up earlier and exercise. My home is slowly becoming more organized as well as back to where I want it to be.

All I can say is it was worth the long haul for the results I have seen.

Hang in there!

Rain, Rain, Go Away

2011-05-22T21:34:00.000-06:00

If you've been diagnosed with Lyme, you might find that rainy days are even more achey than your usual Lyme days. While the theory that a dropping barometric pressure can affect the joints isn't universally accepted because it was based on a very small study performed in 1961 by J. Hollander, MD, patients with arthritis often report worsening of symptoms during rainy or humid weather. This is the case for me. The good news is, as my Lyme symptoms continue to improve so does the pain on rainy days. I can't tell you the number of times I wondered to myself, "why am I so achey today?"

Then it would dawn on me, it's cloudy, humid and raining. I never once saw the weather and thought, "Oh, I'm going to ache today." It was always the opposite. I like the rain, but I'd be happy with one rain day a week and the rest sunny. This phenomenon is most likely where the saying, "feeling under the weather" came from.

The best solution on these days, aside from the usual medications is a warm bath. It was the only solution early on during treatment when not even medication could alleviate enough pain.

I'm doing great lately. Aside from feeling somewhat forgetful and still not able to multitask as well as I once could, I am doing fantastic. Those two issues were always the least of my problems. Now that the most severe physical pain with Lyme rarely returns, what is left over is manageable. It is amazing where I am today compared to 2009 before I began treatment. It is like night and day. Hang in there, keep your head held high. There is hope. It's a long, sometimes winding road, but there is light at the end of the tunnel.

Lyme and Lack of Motivation

2011-05-14T16:00:00.000-06:00

One of the most common symptoms of Lyme is the lack of motivation it causes. There is no way to explain to someone who has never had Lyme why there is such a lack of motivation. To the lay person, you just appear lazy. In my own experience, it's a combination of things. You'd be surprised how often Lymies forget tasks that need to be done. You think the resolution would be to write it on the calendar, but on some days you forget the simple task of looking at the calendar.

I find that if I'm thinking of something I need to do, if I do not do it right that minute, the thought will be gone as quickly as it came. It isn't uncommon for me to lose my notes or forget to check my calendar. I'm fairly good about checking the calendar, but there are those days where you are in a fog and generally unwell and appointments are missed or tasks left undone.

Lymies do not multitask well. As a woman, I could multitask like no other before Lyme disease. I could have several things I needed to do and store it all in my brain and remember to do it all. I might have run around frantically doing it, but there was some amount of pride knowing that I could get so much done.

Now, I can handle one task at a time, maybe two. We can, however, prioritize. Work on getting the most important task done first. Decide which tasks can wait, and most importantly let people know when you feel overwhelmed. Trying to do more than you can handle will cause stress and anxiety and that will not help you to recover.

Let go of the higher expectations you had previous to Lyme. Focus on what you did accomplish rather than what you didn't accomplish today. Do whatever you can to help you remember what you need to do, but don't sweat the small stuff.

You are now on SMT "slow-mo time," and that's okay. If you are in college or should be, you may have to take less credit hours and prolong your graduation. That is a better choice than overwhelming yourself and failing. Most importantly, don't give up! There is life with Lyme. Be happy about what you can do and keep trying to achieve, but don't beat yourself up because you're not perfect.

I felt like giving a pep talk to myself today, but I'm hoping it helps others as well. There are people who understand what you are going through.

Keep Smiling. Smile when you feel like crying.

One more little tip: I recently heard that listening to music can have similar effects as exercising or pain medication because it has been shown to release dopamine. The article is entitled "Your Brain on Music," in Discover magazine. I wasn't surprised at all. When I felt the worst, lying down and listening to music was one of the few ways I could fall asleep at night. So if you're feeling miserable, play your favorite music. You just might find that it helps.

Under Our Skin Airing on over 81 PBS Stations Nationwide

2011-05-01T17:12:00.000-06:00

PREPARE FOR WAR

Under Our Skin will air in Utah on UEN-TV Salt Lake City, May 19, 2011 *All Day*

If you have not yet seen this film, do not miss it. The Infectious Diseases Society of America is doing everything in their power to stop our freedom of speech and disallow the airing of this film. Truth does hurt! Their reasoning (or at least their current excuse) is that it will do harm. I would venture to say that the harm it will cause is not to patients but rather to certain societies and physicians who have made money and built careers and egos off of the most ill in this country.

Support us and watch Under Our Skin when it airs in your state. Follow the link below to see when it will be airing in your state:

PBS Stations and Dates

Those who do not have a date set can call their local PBS stations and ask that they air Under Our Skin. Please send e-mails, blog it, facebook, twitter to everyone you know and ask them to watch this film. There is strength in numbers.

We may be sick and tired, but WE WILL NOT BE BULLIED by a corrupt organization.

Valcyte Saga

2011-04-25T21:48:00.002-06:00

I lied...There isn't really a saga, but I liked the title. So no ACS 200 for me for a while. I have to obey doctor's orders -- for now. I will just put it on the shelf and admire it now and then.

I noticed my eyesight is blurry since starting the Valcyte. I am a bit foggy brained and struggling with word recall. There is a mild nausea with Valcyte but other than that, I'm doing fine.

I made my appointment with a doctor who specializes in carnitine deficiency. That ongoing problem needs to be solved. I think once that is solved (if possible) that I will be very near the end of my Lyme treatment. We're really at the point where we are trying to separate the Lyme symptoms from the viral symptoms and the symptoms that came as a result of secondary illnesses/auto immune disease triggered by Lyme.

The end feels near. That's a statement that would have come with a negative connotation before Lyme treatment but now has a positive connotation. I feel as though I can now manage what may be leftover from Lyme and live a good rest of my life. It's never going to be the same as it was pre-Lyme, but it's still a life which is now worth living.

I value exercise more than I did before. I always loved the way it made me feel afterward, but I didn't much like the process. Now because of the carnitine deficiency, I cannot exercise unless I want to be in bed for two days or pass out or shake. That part stinks, but at least I've passed my 20s and 30s and am now in my 40s where I come to appreciate that it's okay not to be Barbie. I never liked her anyway. She wore far too much pink and her legs were ridiculously long. Ken was never that hot either. He was far too preppy. G-I Joe was kind of hot, and you know he was never seen with Barbie.

So I'll leave you with the question: Who did G-I Joe date?

Valcyte and Lyme Disease

2011-04-21T23:58:00.002-06:00

Ugggh, I just began Valcyte to help with the high viral titers, the CMV, Parvo and HHV6. The doctor feels that we have probably hit the Lyme and my remaining symptoms could be due to the viruses already in my body that went out of control when my immune system crashed. Valcyte is not a pretty medication. It cost me a mere $1,000 something out of my pocket and insurance paid the other 80% percent. I suddenly felt very sorry for AIDS patients. How does anyone stay alive in this world with the cost of these types of medications?

The pharmacy label on Valcyte will scare you to death. The side effects can be numerous and harsh -- diarrhea, upset stomach, dizziness, drowsiness, unsteadiness, shaking (tremors), but "many patients using this medication do not have serous side affects."

Then below that a lovely warning: ...."Gangciclovir (valcyte) can decrease bone marrow function. This serious possibly life-threatening side effect may lead to a low number of blood cells such as red cells, white cells, and platelets. This effect can cause anemia, decrease your body's ability to fight an infection, and cause bleeding problems." WOW, that's an awesome exciting list.

It goes on to say, "Although there is no information in humans, valganciclovir should be considered a carcinogenic."

And my favorite part: "Medical Alert: Do not flush unused medications or pour down a sink or drain unless otherwise instructed to do so by the manufacturer." Hmmmm, the only thing I can think of is they want to make sure they don't taint our water source with this medication, and that sounds scarey.

Despite all that, I am taking the medication. I have experienced the diarrhea and general ill feeling in my stomach. It decreases my wanting to eat and I feel a bit nauseated, but other than that, I seem to be tolerating it okay. It's not my favorite, but it will do for now. My husband ratted me out to the Lyme doctor regarding my use of the ACS, darn him!!! Ha ha! I stopped it per the doc's instructions because I trust my doctor. I believe she is correct in saying that silver is not removed from the body and there are no long-term studies. So while I still think maybe it works, I need to follow through on my treatment and be a good patient. I did do my research and thus far the biggest risk is really argyria which is the turning of your skin to blue or silverish. It's the reaction of the silver to sunlight and from what I have read it does take large amounts of silver. The amounts recommended on ACS200 seem to fall well below that mark. But I did figure in my brain that I have about 40-50 years left depending on what this Lyme does and if I turn blue by the time I'm 70, I'm not sure I'll care. So if the biggest known risk thus far is cosmetic, then bring it on. I don't care if I'm blue at 70. It will make my life interesting. So when the Lyme is done perhaps I'll go back to the ACS 200. We shall see.

ACS 200 and Lyme Disease

2011-04-16T23:30:00.002-06:00

I quit using the ACS 200 a couple of days ago. I was using the therapeutic dose and was hit very hard with something quite similar to a Herxheimer. Last time I was that ill was months ago. Being the skeptic that I am about holistic or naturopathic approaches, I do have to say that I believe the ACS is doing something. The difficult part is to know whether I don't tolerate it well or if it is truly killing off bacteria. I plan to stay off it for about a week and then restart. I'm making myself a test subject because I want to see if it does the same thing. If so, I will reduce the dose until it's tolerable and keep taking the ACS. It's an interesting and promising product if it is giving me Herxheimers. It also means my bacteria load is still fairly high, considering how fast and hard it hit me. I was back to lying in bed and barely able to clean again. Yesterday was an improvement and today I felt much, much better.

So there's my take on ACS 200. It is, from what I have read, the highest quality medical grade silver you can buy.

And I just found this very interesting study at PubMed. This further cements my opinion that ACS 200 may really be doing the job.

Biofouling. 2010 Jul;26(5):583-6.

Efficacy of various chemical disinfectants on biofilms formed in spacecraft potable water system components.

Wong WC, Dudinsky LA, Garcia VM, Ott CM, Castro VA.

Enterprise Advisory Services Incorporated, Houston, TX, USA. wing.wong-1@nasa.gov

Abstract

As the provision of potable water is critical for successful habitation of the International Space Station (ISS), life support systems were installed in December 2008 to recycle both humidity from the atmosphere and urine to conserve available water in the Station. In-flight pre-consumption testing from the dispensing needle at the Potable Water Dispenser (PWD) indicated that bacterial concentrations exceeded the current ISS specifications of 50 colony-forming units (CFU) ml(-1). Subsequent investigations revealed that a corrugated stainless steel flex hose upstream of the dispensing needle in the PWD was filled with nonsterile water and left at room temperature for more than 1 month before launch. To simulate biofilm formation that was suspected in the flight system, sterile flex hoses were seeded with a consortium of bacterial isolates previously recovered from other ISS water systems, including Ralstonia pickettii, Burkholderia multivorans, Caulobacter vibrioides, and Cupriavidus pauculus. After incubation for 5 days, the hoses were challenged with various chemical disinfectants including hydrogen peroxide (H2O2), colloidal silver, and buffered pH solutions to determine the ability of the disinfectants to decrease and maintain bacterial concentrations below ISS specifications. The disinfection efficacy over time was measured by collecting daily heterotrophic plate counts after exposure to the disinfectants. A single flush with either 6% H2O2 solution or a mixture of 3% H2O2 and 400 ppb colloidal silver effectively reduced the bacterial concentrations to <1 CFU ml(-1) for a period of up to 3 months.

PMID: 20544435 [PubMed - indexed for MEDLINE]

Sorrow that Finds No Vent in Tears....

2011-04-13T18:17:00.003-06:00

     I seem to blog more when I'm not feeling well. I walked one flight upstairs just now and my heart was pounding. My muscles are aching all over and I'm so tired right now. I want to fall into bed and pull up the covers but the stubborn side of me says, no, I want to have fun, it's still daylight! I just got my acetyl-L in the mail today, yay! What if it is the ACS 200 causing a herx? I really have not felt like this in a long time. It makes me think that it's possible my body does not like the ACS 200 or it actually works and is giving me a Herx that current antibiotics have stopped doing. I think I get scared -- when I feel yuck -- that symptoms will return to what they used to be.
     I tend to start researching the net again during these times. The more blogs I have in a month, the more likely it is that I was not feeling well. I become obsessed with the idea of finding a cure for this disease during those times, though I couldn't draw a double helix strand if I wanted. I like to think like the parents in Lorenzo's Oil. I think anything is possible, but I know I'm not the person who is going to figure this out. It's just therapeutic for me to get on and feel like I'm doing something. I think by some small miracle I'll read in the news that the IDSA has confirmed that Lyme patients have been telling the truth all along. You never know, maybe I"ll research and wham some idea will hit me and I will miraculously put the pieces of the puzzle together to find the cure for Lyme. That happens to people every day, right? Stupid thoughts like this make me forget how yucky I feel until I stand up.

     I have a lot of obligations this month and I'm a little worried about how I'm going to follow through with the way I'm currently feeling. I just have to remind myself, "This too shall pass."

I think it's good for people to vent in whatever way venting works for them -- as long as it's non violent. =) This is how I vent so as not to bore those who aren't interested in listening. I found a good quote that I'm going to share today:

"Sorrow that finds no vent in tears makes other organs weep."

So find a way to vent and get all that frustration safely out. You'll feel much better. Not venting might just cause more health issues, and more health issues means more bedrest and more doctors, yuck!

Time to Post Something about Something

2011-04-13T01:50:00.002-06:00

Well, it's time to post something about something so here goes. This past week blah, not 2008 undiagnosed Lyme blah -- 2011 Lyme blah. There is a huge difference between the two blahs, but it's still blah. Blah in 2008 was in the 10 range almost daily. Blah in 2011 is more like a 5 and occurs maybe one week out of the month. I know what you're thinking.....but I am without uterus, so it's not that. The right shoulder is being poopy, serious muscle cramping. The BPPV returned a couple weeks ago (benign paroxysmal positional vertigo) but was very mild so I did nothing for it and it eventually subsided.
I did switch to the Wal-Mart brand of acetyl-L-carnitine and that may be the cause of some of the blah. I had been taking 2,000 mg of acetyl-l-carnitine daily due to my carnitine deficiency. I purchased it from Nutriphysiology or 98Health.com in St. George, Utah but I ran out. Knowing I would need it quickly or muscle cramping would return I decided to try the Wal-Mart brand I had available.

Just my opinion, but it is not nearly as good as the product I buy from Nutriphysiology. Not only does it contain 100mg less of acetyl-L per pill, it also comes with half the amount of pills that I get from Nutriphysiology. I figure the cost is nearly the same, but more importantly I noticed a difference in my muscle cramping when I used the Wal-Mart product. My calves started cramping again and then of course my neck muscles are tighter and I was a bit spaghetti legged on Sunday. I've had a lot more fatigue the last couple days than I have experienced in a while and a bit hard of breathing (no energy). I have noticed a difference in the two products. I made sure on Monday to order more Aceytl-L-Carnitine from Nutriphysiology.

I threw the bottle away but it's the same manufacturer of the DHEA I also take, because yes I have low DHEA levels -- it's a beautiful thing. The DHEA I take is made by Douglas Laboratories and the two bottles have the same trademarks on the labels so there you go.

I have never met the founder of Nutriphysiology nor have I ever had any affiliation with them. I was referred to them by my sister in law. Being the skeptic that I am, when she first told me about his products, I kind of blew her off because all naturopaths/homeopaths were weird to me, ha ha. I figured placebos work wonders for some people.

In my desperation afer my many visits to my conventional doctors and before the diagnosis of Lyme, I decided I would use what was formerly my last resort, my sister-in-law's advice. I also researched the founder, Horton Tatarian, and was pleasantly surprised that Nutriphysiology's biochemist and CEO, is a graduate of The University of California, Berkeley, receiving a Bachelor of Arts degree in Biochemistry in 1969, and of UCLA School of Medicine, receiving an M.D. degree in 1974. This, of course, is perfect for me because he has an MD degree and he's a biochemist. He passed my somewhat stringent skeptic tests. He is an MD who became an independent researcher of natural health care methods. I love that because I've always thought the two worlds really needed to come together so we could all have the most well-rounded health care.

I can tell you that I am willing to try naturopathic/homeopathic remedies, but if I am consistent in using the product and I don't notice results, I'm not going to waste my money.

Of the products purchased from Nutriphysiology and used consistently by me -- so I feel like I can form an opinion -- these are the ones I recommend and the reasons why:

#1 i-Flora, probiotic made by Sedona Labs: Having dealt with IBS way before the Lyme, I have tried a lot of probiotics, including the kind that are kept alive & refrigerated and mailed to you in dry ice (VSL #3.) i-Flora reigns supreme. If you have a sensitive stomach, this is the best probiotic in my opinion. VSL #3 worked okay, but I started noticing that it also made my stomach sore for some reason. More strains doesn't always mean better. Sometimes it's the right combination of strains that works. I-Flora must be the right mix for me because I'm sold on it. It's a capsule and doesn't need refrigeration and I have never noticed any upset with it. I love it and it does help your digestive system.

The other product I buy consistently from Nutriphysiology is the ACS 200. I wouldn't say that I'm completely convinced on the ACS 200, but there is something that seems to work in that product. It's advanced cellular silver recommended for immune system health. So in lay terms a type of colloidal silver. What I have learned about colloidal silver since I started researching is that there are many different types, some of which are not good for you or are not as pure as others. I specifically researched ACS 200 and these are some of the things that are said about ACS 200.

"Many forms of bacteria, virus and fungus utilize a specific enzyme for their metabolism, ACS 200 effectively disables the enzyme that is necessary for these organisms to stay alive. ACS 200 is lethal to all species tested of fungi, bacteria, protozoa and virus – recommended by Leigh Erin Connealy, M.D."

So that begs the question for me, if it kills all of the above then what about the good bacteria? Something to ponder.

"The History of Silver in Medicine
Silver has long been recognized in recorded history as having germicidal properties. In 69 B.C. silver nitrate was described in the contemporary pharmacopoeia. In ancient Greece, Rome, Phoenecia and Macedonia, silver was used extensively to manage many immune challenges. From the time man first learned to work with silver, he has known that it delayed the spoilage of foods and that is reduced the symptoms of illness. Hippocrates, the “Father of Medicine,” used silver and instructed that it promoted tissue repair and was a notable topical aid. In the days before refrigeration, farmers tossed a silver coin in a bucket of milk to preserve it. Chemist put silver dimes in Petri dishes to sterilize them. For many years it had been common practice to place silver wires and threads around infected wounds that refused to heal."

You may be thinking, yeah but that was back when they didn't know anything about anything. Well, did you ever wonder why they give you mints after dinner at some restaurants? Peppermint is known to be calming to the digestive system. I've used it in the past for IBS and it does help. The mint after dinner tradition started because they knew way back when that it calmed the digestive system after a meal. Restaurants now do it more out of tradition than medicinal. Other calming agents are ginger and fennel seed (fennel seed tea).

You'll notice that a lot of emergency preparedness centers actually sell silver of various brands to use for water purification, antiseptic and immune system boost. We actually put some in our food storage in case of emergency, because if we have no antibiotics for Lyme, we will need the silver.

"ACS 200 provides proven bacterial kill time and FDA protocol toxicology studies from certified independent 3rd party labs. Formulated for health care practitioners exclusively, RESULTS RNA ACS 200 is the most carefully researched and scientifically tested medical grade colloidal silver formula available today. As shown from independently derived studies, ACS 200 has been proven capable of rapidly killing an enormous array of disease causing organisms-literally oxidizing the cell wall of gram positive and gram negative bacteria as well as naked virus, and all without damaging human tissue."

Okay so that is what some sellers say about it, but I also found this in regards to colloidal silver...a different brand call ASAP which is the brand in my food storage. I'm, however, partial to the ACS 200 because of the studies. I have spoken peviously about Jennica Noorlander, one of the earliest diagnosed cases of Lyme disease in Utah. However, she may have been bitten in that far away land of Idaho, so heaven forbid we say we have Lyme in Utah. If you follow this link Testimonial of Jennica Noorlander and Colloidal Silver you can read the pdf. file of the letter sent to American Silver by Jennica's mother Debbie who graduated from Brigham Young University, (BYU) and is an RN. That of course is another good check for the skeptic in me. This is an RN with conventional medicine training who is vouching for the efficacy of colloidal silver in her daughter's treatment.

Now, while I disagree with her opinion regarding the antibiotics, I do trust her opinion on the colloidal silver. I believe the antibiotics made her sicker because she was again experiencing a Herxheimer reaction which is perfectly normal when you have bacteria dying off in large numbers. It's not unusual to become sicker before you get better. I suspect Jennica had a return of the Lyme because in 1994 they were treating it with what they felt would do the complete job. I don't think they cleared all the bacteria. It likely went into L-form or cyst form and evaded the antibiotics only to return some years later. That would explain the return of her symptoms and the new Herxheimer reaction to antibiotics.

LLMDs now will use more than one antibiotic because not all antibiotics are equal when it comes to killing spirochetal form, cyst forms and those that cross the blood-brain barrier. They are also more likely now to check for and treat co-infections that are now known to be passed by ticks as well --
Babesiosis, Bartonella, Ehrlichia, etc.

Being a fan of BYU, another check that passed my skeptic radar is the following:

"Efficacy: Independent Kill Time studies have been performed at the microbiological laboratories of Brigham Young University to determine the bactericidal activity of ACS 200. Dr. Robison and the BYU research team behind this testing have years of professional experience. They have utilized a Biosafety level 3 facility to test this proprietary silver derivative against a host of pathogens and have substantiated the documented kill times of ACS 200 exceed that of any product of its kind on the market today. One specific study performed against Staphylococcus aureus is as follows:
Discussion: Results from these procedures did not allow accurate log reductions (LR) or percent kill (PK) values to be calculated because in each case there was complete kill resulting in zero counts.
However, lower limits of activity could be estimated. Log reduction (LR) and percent kill (PK) values were calculated using the formulas: 1) LR=-Log(S/So), where S=concentration of viable organisms after 15 seconds; and So= the initial concentration of viable organisms at time zero.2) PK=(1-(S/So)) x100. These values are shown in the table below.

Solution	Diluent	Contact Time	Log Reduction(LR)	Percent Kill (PK)
Solution 7/16/04	Water	15 sec.	> 5.20	> 99.9994
Solution 7/16/04	MEM	15 sec.	> 5.37	> 99.9996

Neutralization control data showed that the disinfectant was adequately neutralized. Expected counts were similar to or slightly greater than those of titer.

The disinfectant preparation tested here (solution 7/16/04) had significant bactericidal activity against Staphylococcus aureus in 15 seconds.

Test Dates: July 22-23, 2004

By,
Richard A. Robison, Ph. D.
Associate Professor
Brigham Young University

If you aren't that familiar with BYU, the average GPA to be accepted is a 3.8 to 3.9. In January 2011, U.S. News Education reported: "BYU Once Again Nation's Most Popular University," beating out Harvard University. Another good check on my skeptic report. This doesn't mean that BYU or Richard Robison support ACS 200. The tests were performed there and that's as far as that goes, so you'll have to decide what you think.

Next is the following link:

Lyme Study: ACS 200® Achieves Complete Kill against Borrelia Burgdorferi

By Lyn Hanshew, M.D.

Excerpts: "Due to the obvious and desperate need for an effective anti-Borrelia agent and that Advanced Cellular Silver (ACS) 200® in previous studies has been proven to be a safe and effective anti-bacterial, antiviral and anti-fungal agent, the following independent studies were conducted.
Independent studies performed by Dr. Robison at BYU generated the following kill-time data using ACS 200® against B. burgdorferi. The kill-time studies used loss of motility of the spirochetes as the kill criteria as observed via dark field microscopy. It is important to know that the Borellia kill-time protocol used for this test was originated by Dr. William Burgdorfer."

B. burgdorferi baseline count:

Mean number of motile organisms: 130/ field. The estimated volume of 1 field is approximately 3.4 x 10⁶ ml. Therefore, the starting concentration of the B. burgdorferi culture was approximately 3.8 x 10⁷ organisms/ml.

ACS 200
Time	No. motile organisms
1.5 min	17
4 min	1
6 min	1
8 min	0

PSS
Time	No. motile organisms
1 min	11
4 min	10
6 min	3
8 min	10

Since a 1:10 dilution of the culture was performed in both the test and PSS control suspensions, the number of live organisms observed after 8 minutes in the PSS control was about 77% of that expected.

Conclusion

After years of extensive research, ACS 200® has now been shown to achieve complete kill against Borrelia Burgdorferi in only 8 minutes. These test results represent a significant feat as the Lyme disease associated microorganism is extremely difficult to culture, test and kill. Most of the B. burgdorferi motility ceased after about 4 minutes of exposure to the ACS 200® solution. No motility was observed after 8 minutes of exposure. Dr. Burgdorfer described similar in vitro testing results
using a colloidal silver preparation. He surmised that silver disables the enzyme(s) used by bacterial, fungal and viral agents for their oxygen metabolism causing them to suffocate upon contact. There have been reports of elimination of late-stage Lyme symptoms using colloidal silver preparations. This data provides the scientific basis for using ACS 200® as an effective anti- Borrelia agent. In the clinical setting, many practitioners currently prescribe ACS 200® to their Lyme patients with excellent outcomes. Adding Advanced Cellular Zeolite (ACZ) nano® to reduce toxic body burden is a very powerful adjunct to the ACS 200® protocol. When taken together, these two products are highly effective in broad treatment."

^1. Burgdorfer, William. “From Penicillin to Mild Silver Protein-An Answer to Lyme Disease Without Antibiotics”. Rocky Mountain Labortories, Division of N.I.H.

So another check for the specific testing of BB and the fact that the discoverer of the Lyme disease bacteria, Dr. Burgdorfer described similar in vitro testing results using a colloidal silver preparation, surmising that the silver disables the enzymes used by the bacteria. I trust Willy Burgdorfer far more than I trust Allen Steere's camp, the camp the IDSA and the CDC seem to be in. After all, Allen Steere could not see in the same blood sample what Willy Burgdorfer did see, the bacteria. Willy Burgdorfer was also far more educated when it comes to spirochetes and way ahead of Allen Steere in his knowledge of these types of bacteria. So it comes down to who you want to trust.

So while my feelings about the ACS 200 are still uncertain, I can tell you that when I first tried it I did not know about any of these studies or testimonials. I do recall some mild Herxheimer reactions at the time I was using the silver early on. My husband used the silver more than I did and seemed to recover more quickly. Coincidence...could be. I just recently started to use it more consistently in conjunction with my antibiotics because they aren't contraindicated. The testimonials and studies are enough for me to give it a go, but the jury is still out on this one. It will be hard to tell which is helping me most if I'm on both but perhaps there will be a day when I am off the antibiotics and I can just use the silver alone if symptoms return. Who knows, but I feel the previous studies and testimonials make it worth a try.

Many conventional medicines we use today are based on things discovered long ago. The difference is in preparation and concentration in many cases, not necessarily in new herbs we discovered. Many of our current conventional medicines are based on the same herbs you will find at your herbal stores. The argument is over whose preparation works best. In some cases it is conventional and in other cases it is homeopathic/naturopathic. You have to be an advocate for yourself because money, power and greed often advocate for some conventional as well as homeopathic/naturopathic therapies. Find what works best for you.

I am an advocate of listening to what your body tells you. That's a skill you pick up with IBS since you may need to find a bathroom in 20 seconds or less or you risk being publicly humiliated. IBS sufferers are very skilled at listening to their bodies, sad but true. Give the proper amount of time for a result, you will know whether a medication seems to work for you, conventional or not.

Utah Legislature HJR024

2011-03-21T16:40:00.000-06:00

Thank you to all those who helped in passing the HJR024 bill which provides a small but needed step in helping Utah citizens with Lyme disease. It is through small steps that great things can happen.

"LONG TITLE
8 General Description:
9 This joint resolution of the Legislature gives
the Legislative Management Committee
10 items of study it may assign to the appropriate
interim committee.
11 Highlighted Provisions:
12 This resolution:
13 gives the Legislative Management Committee items of
study it may assign to the
14 appropriate interim committee during the 2011
legislative interim;
15 directs interim committees assigned these studies to
study and make
16 recommendations for legislative action to the 59th
Legislature before the 2012
17 Annual General Session; and
18 suggests that the Legislative Management Committee, in
approving studies, give
19 consideration to the available time of legislators and
the budget and capacity of staff
20 to respond to the assigned studies.
21 Special Clauses:
22 None
23
24 Be it resolved by the Legislature of the state of
Utah:
25 WHEREAS, the Legislative Management Committee is
created by law as a permanent
26 committee to receive and assign matters for the
interim study by committees of the Legislature;
27 and
28 WHEREAS, the 59th Legislature has determined that
certain legislative issues require
29 additional investigation and study:
30
NOW, THEREFORE, BE IT RESOLVED that the Legislative Management
Committee
31 is given the following items of study to assign to the
appropriate interim committee with the
32 duty to study and make recommendations for legislative
action to the 59th Legislature before
33 the 2012 Annual General Session.
34 BE IT FURTHER RESOLVED that the Legislative Management
Committee, in
35 making study assignments from this list and in
approving study requests for individual
36 committees, give consideration to the available time
of legislators and the budget and capacity
37 of staff to respond adequately to the number and
complexity of the assignments given.

I'll skip from here to line 287, No. 112 of this bill which passed the 2011 general session:

"287 112. Lyme Disease Risk in Utah - to study whether to have the
Department of Health
288 review the threats and risks of lyme disease in Utah,
report on the current status of the disease
289 in the state, and what potential preventive
measures or preparations the state may want to
290 implement."

Yes, it is a small step, but Utahns with Lyme should know that there are people fighting for you. Utah Lyme patients are homemakers, doctors, political activists, Mrs. Utah, etc. They come from all walks of life and professions. They will continue to fight for what is right. Do not give up. Changes may be slow. I hope to see drastic change for my generation and cures for future generations. Never give up, never give in!

Lyme and Attitude

2011-03-12T18:47:00.000-07:00

I don't know how I will wake up tomorrow in time for church at 9am which is really 8am due to Daylight Savings time. This past week has probably been the most odd week I've had in a while. I'm so very tired this week and I am experiencing some left arm weakness along with a bit of leg cramping -- though nowhere near the levels pre-acetyl carnitine. I keep calling it acetylcholine when I am talking to my hubby. That is quite funny because the latter is a poison. I've watched too many crime shows. Do not under any circumstances take acetylcholine. =)

I feel rather overwhelmed this week with feelings of hopelessness. I just wish politics was not politics and all people would do the right thing.

The earthquake in Japan is devastating and like others who read their scriptures, there are some thoughts going through my head, i.e.,

"For nation shall rise against nation, and kingdom against kingdom: and there shall be famines, and pestilences, and earthquakes, in divers places."

Lyme disease, in my mind, fits into this scenario. What better way for a pestilence to spread than for those in control to ignore it and pretend it isn't there. In just the last 15 years, we saw Katrina, the earthquake and Tsunami in Indonesia, earthquake in Haiti, earthquake in China, earthquake in Japan, the flooding in Nashville, TN, and that is just the list I recall from memory. I do not remember in my lifetime ever hearing of so many serious natural disasters as I have heard of in the last 15 years. Then, of course, we experienced 9-11 and the worst economy since...I forget.

We live in a nation that is so intelligent that we can do far more medically than we even realize, but we are held back because of politics, money and self interest. I believe we have the ability to come up with cures for many diseases, but we don't have the common desire or cooperation to do it.

Our sights are set on the things we have and can accumulate, and very few of us are not guilty of that in some way. It's just disheartening to know that we are capable, but because of our own decisions or the decisions of others, we don't see our full potential.

I used to blame Obama for the economy and many of the problems we are currently having until I read some quotes that really put things into perspective for me:

"The conduct of a fundamentally good shepherd may be corrupted by an evil flock."

If Obama was or intended to be at one time a good shepherd, don't forget that it may well be his flock that is corrupt. He does what his flock wants. So if we have a bad leader and bad policies, it is the American people to blame, not one president. We are ultimately responsible to make changes if we are dissatisfied with our government.

The second quote is this: "You should take special care not to aspire to imitate someone simply because you owe him respect, and not to think it beneath you to pay respect to someone whom you would never imitate."

What this means to me is that we can be respectful of others, one being our president, but it doesn't mean we have to imitate the behaviors we dislike. Why do I think this is important? In order to bring about change in any person, they must first feel you see them as valuable. People aren't likely to help you if you invalidate their worth as a human being. I believe respect is given where respect is received, and when the divide is wide, it is respect for each other that slowly closes that divide. You don't have to "sell out" your beliefs to be respectful of others whose viewpoints differ.

I'm still working on my approach when it comes to Lyme. Much of my blog contains the anger I feel towards certain members of the opposing Lyme faction, but I know if I want respect from that camp I must respect them as well. At other times I feel it doesn't matter because I'm already dealing with evil people who don't care, but evil never turned good because of more evil.

That's what I have been thinking about this past week. I need to keep things in perspective in order to survive this disease and bring about change. I need to remind myself to be respectful to others. We all know at least one person we look to and admire because of the way they treat others. I don't know about you, but I for one aspire to be like them. The common denominator always seems to be respect. They know you have faults, but they see you as a person not as "the person who did this...".
When you can learn to respect others, then it's easier to care about them and vice-versa and that translates into wanting to do good for each other.

That's just my take.

Lyme & Violence

2011-02-28T15:33:00.000-07:00

So....one more thing today....Gary Wormser stated that he can't definitively state that Lyme can cause some people to become violent. Well, I can definitively state that it can. I myself have wanted to kill Gary Wormser many times over. Before Lyme, I didn't. Enough said. =)

I'm having an arrrgh day for some reason. Maybe it's the taxes.

Disclamier: I wouldn't really kill Gary Wormser because that would require me to spend money on the flight, the bullets, the gun, the surveillance, blah, blah, blah. I don't have that kind of energy or will to waste my money on him. I just don't think I'd enjoy prison either. I'm not much for tattoos or cell checks, and I've never been successful at making weapons out of ordinary household items. So for now, I'll settle for spitting on his picture or writing mean things about him on my blog. I refuse to make a dartboard of him. Would you seriously want that hanging in your house?

There is excellent evidence that some IDSA physicians are homicidal. I believe, but can't definitively prove, that Gary Wormser is one of them.

But I was just doing my taxes....

2011-02-28T15:08:00.000-07:00

Yay, it's tax time again. I was perfectly fine compiling all the medical bills, getting my job done, and it reminds me I need to call IgeneX and get some lab kits. So I type IgeneX into the search bar and instead of going straight to IgeneX, I turn to an article with a man named Steve Courcier. I'm thrown immediately back into defense mode, upset that I have to read what is likely a fellow Lymie doing damage to the Lyme community and likely to himself. Go ahead, research, read the article.

There was a huge lack of research done on the author's part as well as Steve Courcier's part. The claim was that IgeneX was not a good lab, that it may be overdiagnosing Lyme. IgeneX is a CLIA certified and Medicare/Medicaid certified lab. This requires them to pass very stringent testing. They have never been cited because of the quality of their labwork. In fact, every time someone brings a complaint and the inspectors come out, they are found to be practicing as is required by law. Their tests are found to be as accurate and even more accurate than the Lyme tests produced by other laboratories.

You'll note that they say Steve's labs from Quest did not match his IgeneX labs. Both were positive on ELISA, but not Western blot. His Quest was negative by WB while his IgeneX was positive. Don't forget that Quest does not test all the bands in Lyme. They leave out the crucial bands 31 and 34 that were used in the making of the LymeRix vaccine, as well as other specific bands. IgeneX does not exclude those bands. So why the difference in testing? Well, that is a failure of the testing, not of the laboratory. There is a huge difference.

It is VITAl for all Lymies to learn about sensitivity and specificity. The lab tests which the IDSA would like us all to use are very specific, meaning if you test positive, it is almost certainly specific to that bacteria, which means most certainly positive. However, it is not very sensitive, meaning it can easily miss seeing the bacteria. There are far more false negatives due to this problem than there are false positives. Because of this fact, Steve Courcier is far more likely to have tested false negative through Quest. The IDSA continues to spout that there are lots of false positives when they know very well that the tests are far more specific than they are sensitive. It is an outright lie on their part to state there are more false positives than negatives and they know it.

My own personal experience with my labs certainly backs up the accuracy of the IgeneX testing. I was positive on both the ELISA and Western Blot through both IgeneX and Labcorp. Those two labs could not have backed each other up more, but Gary Wormser would have told me it was a false positive. An IDSA physician in Utah did just that. My sister was positive through Quest labs, both ELISA and Western blot and that again was backed by Igenex labs, but yet even in Virginia the IDSA physician told her it was a false positive.

I can't believe Mr. Courcier went to the devil himself, Gary Wormser. I won't even put a title in front or behind Wormser's name. He doesn't deserve it. If you want to speak to one of the most controversial physicians there is in Lyme disease, you speak to Gary Wormser, the very IDSA physician who refused to meet with his 2000 Lyme panel and discuss the late and chronic stages of Lyme disease, the very man who kicked one of the IDSA physicians off the panel so he could reach a consensus vote on the guidelines without ever having discussed late and chronic stages; and the very man who has admitted to some, but not all, financial conflicts of interest he had when he sat on that guidelines panel.

Mr. Courcier literally has gone to Hell and back and I suspect he is still there until he researches just who Gary Wormser is and puts some research behind the science of the Lyme tests. I feel sorry for Mr. Courcier. He is being misguided, but sometimes those of us who think we are so educated and intelligent (I know it's a completely conceited comment on my part) also have the tendency to believe that the "experts" are truly the experts. I believed the IDSA doctor would not turn me down. This couldn't be happening in our world. They would never harm us, would they? After all, these are the "experts." Hitler was an expert too. Be careful who you follow.

I need to finish my taxes now, but I was so perturbed to read this story. After going through everything I went through and at this day being able to function after my Lyme treatment, it is like a hammer to your head when you read another story that attempts to invalidate the experiences of a Lyme patient. Shame on those who do not do their research! That's all I can say. Going to Gary Wormser is not research, it is simply an opinion --and the Devil's opinion at that.

Welcome Aboard the Black Pearl, Lymies

2011-02-18T12:37:00.001-07:00

A lot of people ask, "Is Lyme an Autoimmune Disorder?" I guess it depends on how you look at it, but in my opinion, the answer is no. Lyme disease is a bacterial infection. Chronic Lyme is listed as an autoimmune disorder, but Lyme which is quickly cured is not. Not all chronic Lyme causes autoimmune disorders, but where do you draw the line? Maybe I don't like to call it autoimmune, because there is no cure for autoimmune disorders. I don't like the term "chronic" in the first place. In my opinion, chronic Lyme is simply Lyme disease that has not been properly treated and may not be properly treated until new antibiotics are found.

Since the Lyme bacteria is so difficult to see and grow in the laboratory, it's just as possible that what we term autoimmue in Lyme disease is actually the body attacking tissue containing the Lyme bacteria. We can see the autoimmune reaction, but perhaps researchers have failed to identify that it truly is attacking a bacteria inside that tissue.

Autoimmunity is the failure of an organism to recognize its own constituent parts as self, which allows an immune response against its own cells and tissues. Any disease that results from such an aberrant immune response is termed an autoimmune disease. How is that for "friendly fire"?

The problem here is that autoimmune diseases occur without Lyme infection and vice-versa. Proving that the autoimmune disease is a result of the Lyme infection may be difficult. Whatever you choose to believe, the two illnesses are treated entirely different.

Lyme disease can trigger an autoimmune response, but it is the failure of a person's own immune system that causes the autoimmune disorder. So I can see why there is some confusion about Lyme being autoimmune. If a person is diagnosed with Lyme disease, is treated properly with antibiotics and able to eradicate Lyme disease, they may be left with an autoimmune disorder that was triggered by the Lyme disease.

However, because the person now has symptoms of an autoimmune disorder, this does not mean they have Lyme disease. It does mean they now have an autoimmune disorder that needs to be treated.

This is tricky business with Lyme because we have no current tests to prove that the bacteria no longer exists inside us. Once a Lyme literate doctor feels you have recovered from Lyme disease, you can begin treatment for your autoimmune disease. The worrisome part of this is that treatment for the autoimmune disorder is quite often steroids or even low-dose chemotherapy, both of which lower immune system function and are contraindicated in Lyme disease. If you have one living Lyme bacteria in your body, the Lyme can return with a full vengeance as your immune system is continually suppressed in order to help your autoimmune disorder. It's a catch-22.

The IDSA would prefer to believe that all symptoms after the treatment of Lyme are either due to every day living and aging or an autoimmune disorder. I disagree 100% with the opinion that symptoms are the "result of every day living." That is comparing apples and oranges, or apples and peas.

We need to be careful about calling Lyme disease an autoimmune disorder. While partially true, I think it lends confusion to the situation. Most of us are fighting for our rights as patients to be treated with long-term antibiotics, which is not the treatment for an autoimmune disorder. The two are distinct entities and are treated differently.

Autoimmune disorders are treated by rheumatologists, not Lyme doctors. Lyme doctors treat Lyme disease. Patient's rights to be treated by any physician of their choice and with treatment that is supported by ALL THE EVIDENCE available in Lyme is important. The IDSA guidelines are supposed to work as "guidelines." Each time I say that word, it reminds me of the line in Pirates of the Carribean where Barbossa says, "First, your return to shore was not part of our negotiations nor our agreement so I must do nothing. And secondly, you must be a pirate for the pirate's code to apply and you're not. And thirdly, the code is more what you'd call 'guidelines' than actual rules. Welcome aboard the Black Pearl, Miss Turner." I guess us Lymies must be pirates in order for the IDSA to maintain the actual definition of guidelines.

Welcome aboard the Black Pearl, Lymies, where the IDSA calls things guidelines but changes the rules as they see fit. Though they will send their own physicians to testify against other physicians who don't abide by the guidelines, they took an about face in the 2009 hearings acting surprised that they were used as anything but guidelines. But many Lyme patients have seen how those guidelines have been used to both deny diagnosis and treatment.

My main focus at one time was getting the IDSA to change their guidelines. It is still a focus of mine, but in Utah, I believe the main focus at this time needs to be educating physicians about Lyme disease and the various different treatment options available. Currently the only treatment they receive regarding the diagnosis and treatment of Lyme is from the IDSA. If patient's rights are to be upheld, they should be receiving information from ILADS as well.

Lyme - Put a Band-Aid On It

2011-02-07T21:53:00.001-07:00

Lyme is a frustrating illness. It is not only frustrating for me personally, but because I am watching what it does to a person who is untreated and who I care about. It's not a pretty picture. The person I'm speaking of is not within my immediate family but is someone I am close to.

She has decided to take a different road, which is to believe what the doctor's at one hospital told her, "You've been treated for that already." She has neurological Lyme disease which requires far more than one or two months of treatment. She had only done oral antibiotics at that point, but she chose to quit her Lyme doctor in favor of mainstream medicine's opinions.

Her left arm is now paralyzed and she was diagnosed as having Parsonage-Turner Syndrome. When I read about Parsonage-Turner, I could easily recall similar symptoms at the onset of my Lyme disease -- shoulder weakness, arm weakness, burning behind my scapula. In fact, my diary lists it as my most painful symptom, the one I hate the most. I could not hold my blow dryer to dry my hair. I could not type on the computer without severe pain.

So I looked up Parsonage-Turner Syndrome in relation to Lyme and found the following abstract in "Joint, Bone, Spine. 2009 Mar;76(2):202-4. Epub 2009 Jan 14." You can find it at the National Institutes of Health under Pubmed.

"Parsonage-Turner syndrome revealing Lyme borreliosis.
Abstract
Parsonage-Turner syndrome, also known as acute brachial neuritis or neuralgic amyotrophy, can be caused by various infectious agents. We report on four patients who experienced Parsonage-Turner syndrome as the first manifestation of Lyme disease. The clinical picture was typical, with acute shoulder pain followed rapidly by weakness and wasting of the shoulder girdle muscles. Electrophysiological testing showed denervation. A single patient reported erythema chronicum migrans after a tick bite. Examination of the cerebrospinal fluid showed lymphocytosis and protein elevation in 3 patients. Serological tests for Lyme disease were positive in the serum in all 4 patients and in the cerebrospinal fluid in 2 patients. Antibiotic therapy ensured a favorable outcome in all 4 cases. Two patients achieved a full recovery within 6 months. Parsonage-Turner syndrome should be added to the list of manifestations of neuroborreliosis. Serological tests for Lyme disease should be performed routinely in patients with Parsonage-Turner syndrome.

PMID: 19147387 [PubMed - indexed for MEDLINE]

Unfortunately neither she or her husband have connected it with Lyme and I cannot make them see. They won't do the research necessary to really learn about Lyme disease, and that's sad. Some persons with Lyme prefer to see Lyme as simple rather than the complex disease that it is. Some Lymies may blame too many symptoms on Lyme while other Lymies refuse to connect the dots at all. They go to doctor after doctor for individual medical problems and those doctors put band-aids on while avoiding the one thing that has a possibility of curing them -- Lyme treatment.
I probably wouldn't post this if I thought she read my blog. I am posting this for those out there who either have family or friends who are in denial about their Lyme or if you yourself are in denial of what Lyme can and does do. If you deny that it can cause serious problems, including paralysis and death, then you have not done your research. You can live in denial all you want, but know that denial and band-aids will not fix you. Band-aids can help your symptoms to some degree, but you need Lyme treatment if you want to stop the damage and recover. While you are busy wearing your Band-Aids, the Lyme is busy destroying. You've only numbed the destruction. I've watched Lyme change someone's personality. I've watched it put a 40-year-old woman on a cane/wheelchair. I watched her arm shake uncontrollably as I rolled the bunched up muscles in her neck.

I worry about those who are in denial or refuse treatment. Just know that at some point as Lyme marches on that it does attack the brain. Left untreated, it's anyone's guess how long you will actually be you. Don't wait until it robs you of your personality, who you were and your ability to think and reason. At that point, you won't have the proper mind frame to get the right treatment. You will be left to those around you to make those choices for you. Sometimes it isn't that the suppport system isn't there, it's that the support system doesn't know -- really know -- about Lyme disease. It is easier for them to believe what mainstream tells them and to do what those mainstream doctors tell them which is -- put a Band-Aid on it.

What Lyme Can Do

2011-01-12T00:20:00.005-07:00

Even Norway has Lyme. Yep, cold Norway. My husband served a two-year mission in Norway. This is the most frustrating part of Lyme. Trying to figure out where and when you were infected. Did I get Lyme when I was bitten in both Utah and Idaho as a child? Did my husband get it while in Norway? Did I get it when I lived in Virginia for one year at 10 year's old? Did I get it when I lived in Omaha or Chicago or France? Or did I get it recently here in Utah when I was hit with a sledgehammer of symptoms? I wish I knew.

When You Have Lyme, Make Carnitine

2011-01-11T22:51:00.001-07:00

Oh, I think I'm so clever with my stupid titles...This post needs to be written for all Lymies. So I mentioned my carnitine deficiency previously. I recently retested and again, though I have taken carnitine, I am still deficient. My levels of DHEA are low and my levels of pyruvate are elevated. This is what some refer to as a oxidative stress. In lay terms and as briefly as possible I will try to explain what is going on.

Since I began the Lyme treatment, much has improved. To date, my erythromelalgia has almost entirely disappeared. My hands and feet no longer burn. I do get hot but it is now more likely related to a thermal issues (thyroid or the carnitine deficiency). I like the temp set at about 71 during the day and 69 at night but the poor kids are freezing. =)

Carnitine, DHEA and pyruvate, along with ammonia all work together like employees at McDonalds -- sort of. If you don't have Carnitine, then you lose one employee, say the fry maker. That means no one gets fries. Who wants to go to McDonalds if you can't have fries -- seriously. Okay, that may be a bit too simple.

Carnitine does the job of burning fat for energy and the others help in that process. When carnitine levels drop, pyruvate levels rise because carnitine is what helps clear your body of the pyruvate which means lactic acid can't be removed from your muscles. Therefore, 10 squats will feel to you like 200 squats and you will be sore for a week after, rather than the normal 2-3 days. Fasting and exercise are the enemy to someone with a carnitine deficiency. Both require the ability to burn fat. Once you are out of your quick energy stores, the carbs, the normal person moves on to burning fat for energy. It's a normal process -- unless you have a genetic disorder called Primary Carnitine Deficieny, in which case you are abnormal, like me. Sorry =(. The genetic test is in process as we speak.

It could be secondary due to the stress my body is under from the Lyme. This would probably be better since I would assume I could get rid of the CD once the Lyme is better. The lab testing seems to point to primary at this point.

The saddest part of all...I saw I don't know how many doctors regarding just the symptoms related to the carnitine deficiency and not one of those physicians ever suggested a muscle enzyme test. This simple blood test would have given them a start in the right direction to curing me. It's not foreign! It just means you have to think beyond the 10-minute $80 visit and order some labs that are slightly unusual, but a longer thought process and better education could have led many a physician to think "muscle enzymes."

It is likely (if it is genetic) that I have had PCD all my life. However, symptoms vary among PCD patients and family members who all have PCD. What can trigger severe episodes are illness -- "KA-CHING" -- Lyme disease. For a while I was confused as to when my Lyme started because some of my symptoms (when I look back) had begun earlier then when I was hit full blast with Lyme. The muscle weakness actually began about four or five years ago, but it was not inhibiting my daily functioning so I didn't realize it was due to a serious problem. I did notice that I seemed to be a bit more sore than usual after exercise but I just thought I was getting older or I hadn't been working out consistently.

When the Lyme hit, I completely lost my appetite. Food went out the door. Actually, it molded in the fridge. In hindsight, I should have made penicillin with it. The loss of appetite brought on the more severe symptoms of carnitine deficiency and "KABLAM" it was all downhill from there. I must give kudos once again to my Lyme doc since she was the only one who ever thought to order the muscle enzyme testing. I mentioned to her that so many Lyme symptoms had cleared, but one symptom seemed untouched and that was the muscle cramping, pain and shaking. She immediately said, "We need a muscle enzyme test." What was wrong with my other doctors? Why didn't they order a muscle enzyme test? I had specifically told several of them I couldn't walk up the stairs, my muscles were aching, burning, blah blah blah.

So if you've done your research on carnitine, you are probably saying "But antibiotics can cause it." I know that. I already reasearched it, and I haven't been on any of those antibiotics that cause it. Given that these symptoms occurred long before the treatment for Lyme began, I can assure you it was not the Lyme treatment.

You might be thinking, "Hey, maybe you didn't have Lyme after all." Yeah, I did/do. Carnitine deficiency won't change your CD57. So far Lyme is the only bacteria/thing known to cause the CD57 count to drop. Mine was 34. Let's not forget that I passed three LabCorp ELISA and IgM Western Blot Lyme tests as well.

To add to that, my genetically unrelated family member has essentially recovered from his Lyme. That's my way of secretly saying, my husband.
He has a few months to go and he's done with his treatment. If you know him, you would know that if he had colon cancer, you would pretty much have to show him the pictures and the labs and then pray that God would give him his own revelation in order to accept it. This is a man you couldn't talk into having a disease if you paid him a trillion dollars. Even if he had one, he'd deny, deny, deny.

Unfortunately for him, he could not deny this one. He had more energy than the Energizer Bunny before he became ill. His knees were swelling off and on. We just passed it off as one of those things since it came and went. Then he was hit with fatigue I had never seen. He was taking a two to three-hour nap every day. Sometimes he would take two naps. In 24 years of marriage, I don't think I'd ever seen him take a nap. His moods (though he won't admit it) were getting difficult to deal with. He was irritable and angry -- a lot. I was watching his personality change, for the worst. There were times I felt like I did not know this person any more. He could no longer do his beloved motorcyle riding because it would put him down for two days. His body was extremely sore afterward and he had massive fatigue. He is as addicted to motorcyle riding as a crack addict is to crack. I am not exaggerating. Since treatment began he has never had the knees swell again. He is back to riding and almost done with his medication.

Maybe the reason I needed to get Lyme was because I needed to find out that I had a carnitine deficiency. If it's genetic, it may affect my children. I can help prevent further damage not only in my case but in their case should any of them have it as well.

I keep trying to find a good reason to have Lyme, but what it really comes down to is this: Bacteria exist. They want to thrive as much as we as humans want to thrive. God doesn't give you illness to teach you something, but he does expect you to learn something from it. Bacterias, cancers, mutations, are just part of nature which God set up. Free agency is given to all of us. If he controlled nature then he would also take away our free agency, the agency we have to learn from our trials.

If we never tasted sour, how would we know sweet? Even we never knew grief, could we really know real joy? We might know what it is to have joy, but would we really appreciate it without first knowing pain? I can appreciate that there has to be good and bad in everything because it is that opposition that allows me to appreciate the good and not take things for granted. This is the way I look at illness, natural disasters, accidents, etc. I don't believe people get illness or pain because they brought it upon themselves for some sin -- unless of course you murder, choose to do drugs, all that jazz and then wonder why you are getting the death penalty or why your teeth fell out.

For those who do not bring it upon themselves, it is simply life and God allowing us to have our free agency by allowing us to experience both pain and joy in this life.

2 Nephi, Chapter 2, Verse 11: "For it must needs be, that there is an opposition in all things. If not so, my first-born in the wilderness, righteousness could not be brought to pass, neither wickedness, neither holiness nor misery, neither good nor bad. Wherefore, all things must needs be a compound in one; wherefore, if it should be one body it must needs remain as dead, having no life neither death, nor corruption nor incorruption, happiness nor misery, neither sense nor insensibility."

I personally will take the pain because that makes the joy that much better and much more appreciated.

Slyme on, my Slymemates! =) P.S. I'm gaining weight out of control, stupid side affect of the CD and perhaps my thyroid. Grrrr! The only thing I liked about Lyme was the easy weight loss that came with it. You can't have it all!

Much About Lyme Disease Controversial, Unknown - Baltimore News Story - WBAL Baltimore

2011-01-07T21:53:00.002-07:00

Much About Lyme Disease Controversial, Unknown - Baltimore News Story - WBAL Baltimore

Another Lyme story. Note that the infectious disease physician from John Hopkins stated in this story that there is no evidence that Lyme can persist. Let me point out to you that in the November 2009 newsletter put out by John Hopkin's, it specifically stated that Borrelia Burgdorferi, the bacteria that causes Lyme disease is one of the bacterias to have been found to go into what is called "L-form," or cell-wall deficient form. In this form, the antibiotics recommended by the Infectious Diseases Society of America are ineffective since those antibiotics REQUIRE the bacteria to have a cell wall -- otherwise the antibiotics stroll right on by the bacteria because they don't recognize it as the enemy. It's outrageous that the infectious disease physician is completely unaware of the research that has been going on right in his own backyard!! Not only this, but his statement was made four months after John Hopkin's came out with this information. What is wrong with these physicians? Or should we ask, what is wrong with John's Hopkins that they are employing physicians who don't read the medical literature produced right under their noses? The IDSA has been very effective at keep our physicians in the dark about the Lyme disease.

There are far too many contradictions in physician statements regarding Lyme disease and the research going on at Johns Hopkins. Please follow the link below to view the very article at Johns Hopkins that speaks of Borrelia Burgdorferi having the ability to morph into L-form. It makes me want to bang my head against a wall. I love the media attention given to Lyme and at the same time I'm thinking why didn't this reporter research the story enough so she could ask this IDSA physician point blank why John's Hopkins own research was in direct disagreement with his statement that Lyme does not persist? Arrrrgh!!!!!

Johns Hopkin's Research Into L-Form Bacteria

2011 Resolutions

2010-12-31T16:09:00.000-07:00

Wow, it's almost 2011! Hard to believe. I have had the symptoms from Lyme now since March of 2008. The first two years were the worst, but I expect 2011 to be much better. I continue to improve. I realize that I must take carnitine as I am deficient either due to the treatment or the possibility that there is a genetic factor. Either way, it helps my muscles quite a bit.

My resolution for 2011 is to work out and eat right. I haven't exercised much because exercise is not good for someone who has a carnitine deficiency. It makes the problem worse. Just cleaning the house is sometimes enough to put me in bed because my feet and legs and arms are so sore. Sitting makes them worse. I have to lie down. If I want to exercise, I must take the Acetyl-L carnitine. I plan to commit at least one day a week and then move up to two and eventually three. I doubt I will do more than three days a week.

I have gained weight in the past few months. This is most likely due to my being able to eat food again as well as the low carnitine. Carnitine is needed to burn fat for energy. I feel very optimistic about 2011. I've seen huge improvements since I began treatment a year ago. Though the improvements are much slower now than they were in the beginning, I plan to stick it out.

For those of you considering new treatment or in the phase of treatment where you aren't functioning well -- if at all-- it will get better. If you aren't feeling a difference six months into treatment and an even greater difference one year into treatment, you may want to consider seeing a new doctor. The advice of physicians who will treat chronic Lyme can still differ widely. I hope one day there will be a better standard by which all physicians can abide by that will effectively treat the disease. For now it is a guessing game for good physicians as well. Admission by the medical community at large, the CDC, etc. will provide us with greater research into the disease and one day provide a better treatment and hopefully a higher cure rate.

Make 2011 a great year! After all Nostradamus and the Mayans predicted the world would end December 21, 2012. Ha ha! I just had to add that. I did think this morning..."What would I do if I knew there was only a year left?" It's not a bad idea. I think I'd focus on the important things in life. =) Cheers!

HealthWatch: Bay Area Lyme Disease Patient Fights Insurer « CBS San Francisco- News, Sports, Weather, Traffic and the Best of SF

2010-12-07T13:04:00.003-07:00

I have to ignore Lyme sometimes because there are days I am so angry at what is happening and the continual denial by the IDSA that their guidelines are flawed. Here is another story below if you're interested but be aware if you're having one of those days, it will just make you angry. As a Lyme patient, I certainly don't wish this disease upon anyone but I can't tell you that I haven't at times wished that certain IDSA physicians and certain politicians, etc. could get this disease. It's not that I want people to suffer. I want them to understand what they are knowingly doing to others. I want them to see the situation they put every Lyme patient in, and I want them to TELL THE TRUTH! ARRRGH! Okay, I have to stop thinking about Lyme today because it's one of those days that it's just going to make me angry. I look forward to the day I can look them in the eye and without saying anything know that we are all vindicated and they now get to see and feel what their actions truly have done to hurt others.

HealthWatch: Bay Area Lyme Disease Patient Fights Insurer « CBS San Francisco- News, Sports, Weather, Traffic and the Best of SF

Recipe for Lyme Disease

2010-12-04T18:36:00.003-07:00

Some who have Lyme choose to get treatment and forget about Lyme. I believe it's important to strike a happy medium. You need to return to normal life, but at the same time keep fighting for what is true and right. I feel it's my duty to continue fighting not only for myself but for others who have Lyme and for the many others who will be diagnosed in the future.

With so much arrogance in the medical community surrounding Lyme which heaps enormous amounts of emotional pain upon a Lyme patient, and in some cases friends, family members or neighbors who contribute to the emotional pain by assuming you are either a hypochondriac, are "obsessed with medical stuff," or simply feel that you can't be as sick as you say because "you look good," it's important to continually remind ourselves that we are not alone. I really don't know what I would do if I did not have a support system. Though my immediate family is supportive and the majority of my extended as well, there are still a few naysayers.

There are those who dare to make assumptions without having thoroughly reviewed the medical literature and countless testimonies of the afflicted as well as the experts. They will never look at your medical records or attempt to walk in your shoes, yet they will still make arrogant assumptions which cause emotional pain which can easily surpass the amount of physical pain that Lyme causes -- and that alone can be immense at it's worst.

If you haven't experienced the physical pain in Lyme and you would like a glimpse, I have the recipe for you:

(Of course I am not really recommending anyone actually follow this recipe. If you do, then you take complete responsibility for your actions. =))

RECIPE FOR LYME DISEASE:

First, bruise every part of your body, including the top of your head. Be sure that the bruises are dark purple to black. While bruised, cross one leg over the other, sit in a theater for two hours, get a deep tissue massage, have someone poke you several times all over.

Avoid potassium until your body is potassium deficient to produce charlie horses which should mimic the muscle tension you should soon be feeling all over your body. Exercise while charlie horses are in full bloom.

Lie down on your bed at night. Try to find a comfortable position. If necessary, find a new, lighter quilt or bedspread if you can no longer tolerate the pain that heavier quilts should be creating on your newly and permanently bruised body (until proper treatment that is).

Take 8 sleeping pills every four hours. Put random nails, sharp side up in your mattress. Be sure you are lying on at least three to four nails at all times. Wake up several times a night in an attempt to alleviate pain by switching from the now more painful side to the soon to be more painful side you haven't yet slept on. (Sleeping pills are probably a close equivalent to the fatigue and brain fog you experience with Lyme, but the pain will still wake you up at night.) Be sure to wake up at least 8 times per night. If you aren't waking up that many times, add more nails to the bed.

After 10 am, roll from the bed to the floor in order to force yourself to walk to the restroom, try not to pass out, crawl if necessary. Take more sleeping pills to mimic fatigue and brain fog.

Return to bed and request a family member bring you a hammer. Hammer your knee joints, hip joints, toe joints and finger joints until you are unable to walk, or write without a great deal of pain. Try to get your right footpad to swell up if possible.

Now walk downstairs to the kitchen. Take two doses of Epicac syrup (to mimic nausea). Wait 30 minutes and attempt to eat food. Eat one bite and return food to fridge.

Slowly return to bed. Stop halfway and rest to avoid passing out.

Go to restroom to throw up, use restroom, return to bed. Tell family you are sick and don't want to talk to friends or family today.

Remove nails for a few hours. Stay in bed except when visiting restroom. Nap for two to three more hours from 1-4 pm. Manage to eat a slice of bread and drink water.

Take shower if possible. Sit down in shower to avoid passing out. Wash hair slowly, don't bother shaving legs, you don't have the energy. Get towel and immediately return to bed. Lie in bed with towel on.

After 15 minutes, grab comfortable clothing and return to bed. Dress while lying in bed. Attempt to blowdry hair because you are supposed to go somewhere in an hour. Sit down on bath ledge to avoid passing out.

Light your left scapula on fire. Add a 30 lb. weight to your blow dryer, then lift left arm and blowdry hair.

Repeat the above ingredients but before falling asleep the 2nd night, be sure to light your hands and feet on fire. Sleep with hands and feet uncovered to allow heat to escape and diminish burning sensations. Return nails to bed, but this time focus them on a different part of your body.

Third night, fill your bed with ice blocks to mimic chills. Cover yourself with several blankets and clothes on to stave off chills. Attempt to sleep. Melting ice will mimic the upcoming night sweats. You should be soaked several times a night.
Chills should trade off with night sweats and you will need to trade off putting ice blocks in bed, adding covers and then removing ice blocks and covers and turning your heater on full blast so you can barely tolerate the heat. Do this several times in one night.

Repeat this process. Ask the family pet (who will mimic the physician) why you are unable to sleep and why you are hurting so badly. Follow the pet's instructions. If this does not alleviate symptoms, seek advice from another family pet or neighborhood pet. If you get a blank stare, do not return to same pet. Cry, rinse, repeat.

Continue process while doing your daily chores, helping your children with math problems, going to work, running the kids around, and you'll have a glimpse of what Lyme disease can do. It sounds pathetic because it is pathetic and it is Lyme.

With treatment the physical pain does improve, but pain caused by a family member, friend or neighbor who questions the validity of your experience and your illness cuts you to the core. That pain is far more difficult to cure. If you're someone with Lyme, I'm sorry if you have a family member who has done this to you.

If you know someone with Lyme and you have done this to them then shame on you. For me personally, it is the most hurtful thing I have experienced with Lyme.

When you make a characterization or decision about someone, be sure you weigh the consequences of your choices before you decide what you believe. You better be able to live with the consequences of your choice if you are wrong.

I'm posting these videos because I rely on these to remind me that I'm not alone and that there is good reason to fight for what is right. You may doubt an adult, but when you see what Lyme does to a child, how can you not stand up and fight?

Lyme Disease - MS Misdiagnosis from DanW on Vimeo.

Welcome to the Jungle

2010-11-10T02:10:00.000-07:00

So if you found this blog because you think you may have Lyme or you know you have Lyme then, "Welcome to the Jungle." Lyme is exactly how the song sounds. You know, the one Axel Rose sings. You're going to feel pretty lost, pretty angry, pretty depressed, very sick....wash, rinse, repeat.

Okay, so you will feel like that for a while, and if you get proper treatment you will one day go, "Wow, this is what normal feels like." More than likely it has been so long since you felt normal that you will have completely forgotten what normal feels like. You will have accepted the new, pain ridden, mind numbing body that is Lyme. You will probably be consumed with thoughts of your new, uninvited guest.

You're going to hear people say things like, "You just have to learn to accept it and be grateful for what you have." Hmmmmm...those are people who have never experienced Lyme disease and who will turn on a dime if they are ever stricken with Lyme. When I say to those who have never had Lyme disease that you really have no idea how this disease will knock you down, I really mean it. I don't care how strong you are, how great your health is, how young you are, IT WILL TAKE YOU DOWN!

Are there things to be grateful for? Yes, but it may take a while before you can see them. At my worst two years ago, I could tell you I was thankful for death because it was relief from the physical pain I was enduring and the mental anguish of having no physician who could figure out what was wrong with me. I was grateful for the comfort that is provided those who are near death or simply just willing to "give up the ghost" to alleviate the pain. I felt I was there. I absolutely know that there is comfort provided. It's not comfort that takes away physical pain. It's the comfort that there is life beyond this life and that your loved ones that remain here will be okay. That may sound morbid to some, but it isn't to me. Hanging on to this life as if it were the only life sounds morbid to me. This life is far too brief for too many people.

So now that I have recovered nearly 75% of my health, I have other things to be grateful for. I'm grateful that we still have good, honest people in this world who will defy the majority in order to do what is right. I'm grateful that I have a very hard-working husband who has cared for his family and has supported us in this journey. I'm grateful for friends and family who were genuine and sincere. I'm grateful that God led me to the answer and that those he chose to work through were brave enough to speak out about Lyme. I'm grateful I had a chance to be a mother for as many years as I have regardless of where the rest of my journey takes me. I'm grateful that I have such awesome children. I couldn't have asked for any better. I'm grateful God gave me a sense of humor. I don't know how people make it through trials without a sense of humor. I'm grateful I was taught about Jesus Christ and Heavenly Father from the time I was young because when I felt I had nothing and no one else to rely on, I knew they were there listening. I'm grateful for pain now, but only because when the times does come for me to leave this Earth, pain will make the departure that much easier, ha ha! It's true.

I've decided that it makes sense for our bodies to wither away as we age. If they didn't, why would we ever want to leave this Earth? I figure it's God's way of easing us into the next phase and making it less difficult to depart this one. That's not Mormon doctrine, of course. That is me doctrine. =)

Okay, so now I'm done with my gratefuls and I'm going random again. If you have Lyme, please see your dermatologist once a year! I have a lovely three-inch scar on my left thigh/buttock because of a "Combined compound/inverted type A variant of deep penetrating nevus with moderate to rare severe cytologic atypia." In lay terms: it is as close as you get to it becoming melanoma without it being melanoma. Had I not had it removed, it more than likely would have evolved into another melanoma. My first one was a Melanoma and it was removed in December 2009 from my toe. One of the causes of melanoma is a weakened immune system. It's my personal belief that Lyme is contributing to the development of these issues, and I expect it won't be the last of them. So I'm throwing that out there because it would really be a shame to get treated for Lyme and then die from Melanoma. Just be aware that Lyme does weaken your immune system and allows for other things to occur that might otherwise pass you by. You need to be careful you don't ignore these other medical issues because you are too busy thinking about the Lyme. There is no point in getting Lyme treatment if you ignore other deadly medical issues.

Last but not least, smile even when you don't feel like it. Have you ever tried to cry while smiling. It's not easy. Just the act of smiling will make you feel a little better. Laugh at yourself. It's okay to laugh at how pathetic your life may seem at times. Oh, and learn to do as many things as possible on your bed. That way when you are really sick, you can still feel like you accomplished something that day. Okay, so that sounded funny. What I mean by that, for example, is have your spouse carry the laundry basket to your bed. When you're really sick you won't be able to carry that basket, but you can fold the clothes while laying in bed. I made jewelry for birthday presents while laying in bed. Do whatever you are able to do without making yourself sicker. It will make you feel better knowing you were able to do something other than just lying in bed. Holding down the depression you get from not being able to function as you once did is half the battle. Trust yourself. You know what is going on with you better than anyone else. Don't let someone else's doubts (i.e. IDSA) dictate the course you take. Never lose hope. Hope is the only thing that keeps you going during the rough times, and trust me, you will need it!

Happy Post Halloween?

2010-11-03T20:37:00.000-06:00

I'm at a loss for a title for this blog, so the above will have to suffice. One of the biggest issues I have with treatment is not knowing sometimes that my symptoms are as bad as they are until my head pops above water. I'll explain what I mean.

The Levaquin did cause me to have quite a bit of brain fog. I was having a terrible time with names and word recall. I was having more severe muscle cramping in the beginning and the joint pain returned. I had some days where it was so hard to wake up and yet when I wanted to go to sleep at 12pm at night, I couldn't. I was waking up several times a night. I was hot even with the temperature set at 70 degrees and the overhead fan on all night long. I had more weakness in my arms and legs and felt this buzzing, electrical feeling in my left foot when I would lie down at night. I did have some return of chest pain, though it was mild. I had a few days where I was cold one minute and hot the next minute.

And then within the last two weeks it was as if I had been under water and all of a sudden my head popped up. It wasn't until then that I realized that I was having those reactions. Feeling normal has been so rare the last two years that on those days when your head does pop above water, you suddenly realize, "Ohhhhh, this is what normal feels like." Those normal days are happening more often, though they are still the minority -- but they are happening and that is a good sign.

Living With Lyme Disease Part 1 of 6 - Video - WMUR Manchester

2010-10-19T19:18:00.007-06:00

Please follow this link to a video regarding Lyme disease. It's an excellent news story from a news station WMUR 9 in New Hampshire. I wish the video would appear, but alas you have to click the button. Am I angry about Lyme still. Yes, yes, I am. It is the anger that pushes me to continue to talk about Lyme disease and get the word out and I see that as a positive outcome. I'm not going to ignore Lyme, though I want to constantly. I'm going to speak out until my dying day, whether that be near or far, because it is the right thing to do. "Never Give Up, Never Give In." "Hope for the Best, Prepare for the Worst."

Living With Lyme Disease Part 1 of 6 - Video - WMUR Manchester

Former LDS Missionary and Mother of Three Dies After Seven Year Battle With Lyme Disease

2010-10-12T15:21:00.003-06:00

Don't think Lyme disease is serious? Think again.

"Leigh DeBragga-Case

August 13, 1965 - September 11, 2010
La Mesa, California

CASE, LEIGH ANN DEBRAGGA
9-11-2010
Leigh Ann DeBragga-Case, 45, of Mesa, AZ- our beautiful, loved, cherished and truly awesome wife, mother, daughter, sister, aunt, niece and friend, passed away on 9-11-2010 after a courageous 7-year battle with Lyme disease. She spent her early years in Jamestown, Rhode Island and her teens in Salt Lake City, Utah where she graduated from East High. College included time at the College of Eastern Utah, University of Utah, and ultimately ASU where she graduated magna cumme laude with a degree in Child Development and Family Studies. As a missionary for the Church of Jesus Christ of Latter-Day Saints, she spent a year in Spain and 6 months in San Diego. She was fluent in Spanish, Portuguese, . ."

Video Courtesy of KSL.com

When Life Gives You Lyme...

2010-10-08T18:08:00.000-06:00

I have no answer to the end of the title of this day's blog, but I would like to put, "Get Mad," not because I want people treating others badly, but because I think you have to get mad to be proactive in this disease. If you aren't upset about what is happening in Lyme, you should be. I don't advocate revenge. I do believe in standing up for what is right and putting your voice out there. It's one of the ways we are able to change things as citizens.

I haven't felt super the last few weeks. I still function okay. I've had more joint pain, particularly in the knees. I doubt the cold, rainy weather is helping. I think the Levaquin has definitely brought on a new round of herxing, but less severe than the herxing I experienced in January and February this year.

I noticed the two days where I had erythromelalgia were actually the days I had forgotten to take my Levaquin until late afternoon. I did eventually take it, but I do believe the Levaquin is helping the erythro. How long it will take to totally go away is still a mystery. I've had some brain fog, but not terrible. I have had more fatigue. I've been gaining weight which I like and hate. I'm not sure if the weight gain is normal, however. I may have to get my thyroid rechecked and up the dose of my synthroid. Thyroid issues are a great side effect of Lyme. Lack of exercise definitely hasn't helped.

My doctor didn't tell me to take Acetyl-L Carnitine, but I decided to try the supplement since it wouldn't be harmful if taken at the recommended dose. I believe it has helped with the muscle cramping. I have noticed a difference. I didn't take it today or yesterday and my muscle and stamina as well as brain fog are increased today. I am waiting to hear from my doctor regarding what I should do about those levels.

News from the CDC will be coming shortly and I'm semi-dreading/excited. I shouldn't have my hopes up, but I do. I somehow think they are finally going to vindicate me, but my brain tells me they won't. My brain tells me they will do what they did to the people in Missouri who had an identical rash to the Lyme EM rash as well as symptoms of Lyme. Dermatologists could not tell the rash apart. They determined it to be some other "Lyme-like" illness because they didn't believe these ticks in Missouri could transmit Lyme. They thought they were an entirely different species of tick. It was eventually proven that the species of tick in Missouri and the species of tick that carried Lyme in the East could reproduce offspring, which means they are of the same species. Therefore, both ticks can indeed transmit Lyme disease, making the CDC's conclusion defunct.

I could stop being upset at this disease if this disease would ever go away or become tolerable, but it reminds me almost daily that my life is changed forever. It isn't something "you just get used to" because the symptoms do not remain constant, nor do they remain the same. You don't know if you have halted the damage or if the damage is ongoing. You don't know the end result, and you can't just take a steroid or pain pill to make your life livable. Unlike many other illnesses, we don't have a daily treatment that we can take for the rest of our lives to make our lives as functional as possible. We are still guinea pigs with our physicians trying to help us as we try to help them learn more about this disease. The types of medications we take cause other symptoms, some positive, some negative, yet if we stop the medications before our physician feels we should, the Lyme may return in full force. I can't go down that road again. I've been there. It's the most miserable road I have ever traveled.

I realize that auto-immune diseases don't have a cure, but many of those diseases do have treatments which greatly improve the lives of those who suffer. We don't yet have that in Lyme disease. We are the pioneers in Lyme. We are still looking for that therapy that will definitively cure or put this disease into remission. This IS what Lyme is about, and it is a plague. It's a plague of ignorance. It's a plague that slowly debilitates the infected. Eventually there will be so many debilitated with this disease that it will overwhelm our country. We will no longer need jobs in the economy because we won't have people who can work those jobs.

Carrying on a full-time or even a part-time job with Lyme disease is unfathomable to me. I know people have done it, but they have done it with a significant amount of pain and hardship. The majority of chronic Lyme patients are unable to work without appropriate treatment. Some are self-employed and are able to work from home where they can do the work on their own time. This plague robs you of your freedom. It holds you captive. But it is the continual denial of this disease that is really the captor. If our medical community, the CDC, our health departments and our government would DO WHAT IS RIGHT, we could at least feel we had advocates who were trying.

Instead, we feel like we have been thrown in the garbage. We are human beings who hold no value to these institutions as well as people and we are disposable. They wonder why we seek out and are willing to pay anything to those doctors who will help us. This is because we know we are not disposable. We know something is not right. We care about our families and we care about the lives of others, and if we sit down and die, they win. I for one will not let them win. It might just be me who feels a bit of victory in my small stand, but it's a victory I need to feel, otherwise I might believe as they would have me believe, that I am disposable.

Doctors With Lyme Disease

2010-09-25T22:18:00.005-06:00

Undetected Lyme disease nearly killed Duke Researcher
"Durham County, N.C. — Dr. Neil Spector, a breast cancer researcher at Duke Comprehensive Cancer Center, was always a picture of good health, but while practicing medicine in Miami in the mid- to late 1990s, something was wrong."

The only disappointing part of the story is that this physician chose to be an advocate for the American Heart Association but mentions nothing about being an advocate for Lyme disease, the cause of his heart problem. I can't help but feel like he's betrayed the Lyme community by not speaking out about Lyme disease.

Lyme Cases in Utah

2010-09-25T21:53:00.000-06:00

As seen in the KSL Classifieds:

"Yard Sale/ Boutique to help support mom and daughters with Lyme's disease

Bountiful, UT 84010 - Sep 16, 2010

We are having a yard sale at the Clinton City Farmers Market. All proceeds will go to Jeannie Smedley who suffers from Lyme's Disease and has passed it on to her kids. Their insurance doesn't cover their medical expenses so this is to help them out. The market runs from 8:00 am to 12:00 am at Veteran’s Park -1000 W 1800 N. Clinton, UT
Lots of scrapbooking stuff, furniture, I have a big stockpile of toothpaste and other toiletries that we will be selling for cheap! Lots of new Febreze items that will also be really cheap. Games, toys, and lots more! Come check out what we have and support someone in need at the same time! Thanks!
JUST ADDED: BASSINET, LOTS OF GIRL CLOTHES FROM SIZE 12 MO. TO 18 MO."

Lyme and Muscle Fatigue, Carnitine, Pyruvate

2010-09-24T10:33:00.001-06:00

I have been experiencing muscle fatigue since I became ill. It first started with arms shaking if I were to do push-ups or simply just hold myself in a push-up position. It moved from there to my calves which began to cramp up. Then it was in my hip muscles. Recently it has gotten a bit worse. That is the one symptom that is the most difficult to find relief from. After having my arm shake all by itself from cutting a few branches on the trees outside, it was obvious to me that it was muscle fatigue. The muscle just felt weak.

My doctor recommended testing the muscle enzymes. I had to exercise before the test to get those enzymes to kick in. Within 15 minutes of exercising my thigh muscles were so tight I was afraid they might cramp up and not release so I stopped at that point and went for the testing. The test was performed about 45 minutes after working out. Pyruvate levels were elevated and my carnitine levels, free and total are both low. I haven't heard from my doctor yet, but after researching, I suspect I will have to take Acetyl L-Carnitine, which is an over-the-counter medication. The lab stated I should have the tests redone in a few weeks. It looks to be dietary and/or an increase in urinary loss. We still have to rule out renal tubular dysfunction. I am hopeful that the levels will come back to normal after the recommended treatment and that this will clear up some of the biggest problems I have had with this Lyme. I could tell something was changing and the muscle fatigue was getting worse, but it was before the addition of the Levaquin, so I don't believe it is that. My lips have been twitching/quivering the last two days. I get tired but can't fall asleep until late, and then it's hard to get out of bed. I don't know what we will do about the pyruvate levels.

This problem decreases your stamina, makes it hard to go up a flight of stairs. At the end of one flight up, my calves were burning. I feel more achey and I have had some chills. My body tires easily. I just don't have the energy to do as much as I was doing the previous month.

On the bright side, my erythromelalgia has only flared once that I have noticed since starting the Levaquin. I actually wear socks on my feet again because they sometimes get cold. That is really unusual for me. Before Levaquin I was wishing it would get cold outside and now I want it to stay warm a little bit longer.

So if you are experiencing these muscle issues, ask your doctor if they can perform a muscle enzyme test. This happens in other conditions as well, so it is not Lyme specific, but it definitely exacerabates the Lyme.

Lyme Disease in Davis County and Holladay, Utah

2010-09-21T00:34:00.002-06:00

Karen Jacobsen's Lyme disease started in 1989 from a bite she presumed was a spider bite. It occurred in her yard in Holladay, Utah. She subsequently tested positive for Lyme disease. See this link for her story:

SLEUTHING PAYS OFF FOR WOMAN WITH LYME ILLNESS

Suspected Case of Lyme Disease in Davis County, August 26, 1992

They may be calling it suspect but I find it rather odd her symptoms came on shortly after a confirmed tick bite. Tests for Rocky Mountain Spotted Fever and Colorado Tick Fever were negative.

The "Mulch" Appreciated Efforts by the CDC

2010-09-13T13:32:00.002-06:00

So I still have to confirm this story (which I will do, but I'm short on time right now). I read the following about a warning put out by the CDC:

"Would you believe the CDC actually sent letters to veterinarians in Florida warning them to expect Lyme disease to present in small animals and to be on the lookout for it? The reason for this notification was mulch from the northern states had been distributed in Florida and it was found to be infested with ticks!"

I can't tell you how often this thought has occurred to me since I found out I had Lyme. I love gardening. I used to spend hours weeding and nurturing my garden. I often used mulch, maneur, all that fun stuff. Much of it was bought from Home Depot, or a local nursery, WalMart, you get the picture. I wondered many times if perhaps infected ticks were sent to us through soil. I couldn't help but wonder where those bags actually came from. They certainly didn't come from my area where we have clay. Were they all shipped from a nearby state or some fertile ground in Utah in some corner somewhere?
No doubt this could be one way Lyme disease is being spread, and that one is through human transportation rather than birds or deer. If you think it's an odd thought, it's more ridiculous for our medical establishment to assume they can't come to Utah than it is to assume they could have been shipped in our soil. I doubt they have a "tick checker" before they bag the soil.
This is how we got a venemous Brazilian spider here as well. It was shipped with some strawberries. It isn't that difficult unless you are unable to think outside the box.

Utah Health Department admits, "There is now definite proof that Lyme disease can be acquired in Utah."

2010-09-11T01:35:00.011-06:00

This is from the Utah Health Department's own website regarding Lyme disease, yep, straight from the horse's mouth. They knew this in 2007.

Lyme disease: Utah Public health - disease investigation plan (Click Here to see the actual Document)

Lyme disease: Utah public health - disease investigation plan
Publisher: Utah. Office of Epidemiology; Utah. Dept. of Health
Date Published: 2007
Pages 7pIdentifier: http://utah.ptfs.com/awweb/guest.jsp?smd=1&cl=all_lib&lb_document_id=18122

"Reservoir:
Lyme disease is tick-borne disease. Vectors include Ixodes scapularis (dammini) and I. pacificus, which is present in Utah. White-tailed deer are an important maintenance host. Dogs, cattle, and horses are all susceptible to this disease."

"Transmission:
Tick-borne. The length of time of tick attachment for transfer of the spirochete is unknown, but in experimental studies is 24 hours. Maternal transmission of this disease is possible but has not been well-documented."

Note the words they use: "Well documented." In that case, they are correct. That's because very few studies have been done regarding maternal-fetal transmission. Here is one of the earliest cases of maternal-fetal transmission. Not only do they find spirochetes in the stillborn baby, the mother of this baby was bitten while on a hike in the "Wasatch Mountains" right here in Utah! One of the authors is none other than Willy Burgdorfer, PhD, the discoverer of the Lyme bacteria and for whom it is named after, Borrelia Burgdorferi.

"Susceptibility:
All people are susceptible. Reinfection can occur in people who were treated with antibiotics early in the disease cycle."

See also: INFECTION AND IMMUNITY, Jan. 1995, p. 66–72 Vol. 63, No. 10019-9567/95/4.00+0 Copyright q 1995, American Society for Microbiology
Fetal Outcome in Murine Lyme Disease

ROBERT M. SILVER, 1* LIMING YANG,2 RAYMOND A. DAYNES,2 D. WARE BRANCH,1 CAROLYN M. SALAFIA, 3 AND JANIS J. WEIS2
Department of Obstetrics and Gynecology, 1 Division of Cell Biology and Immunology, Department of Pathology,2 University of Utah School of Medicine, Salt Lake City, Utah 84132, and Department of Pathology, Georgetown University Medical Center, Washington, D.C. 20007 3 Received 11 July 1994/Returned for modification 15 August 1994/Accepted 11 October 1994
and: Teratogen Update: Lyme Disease. Decide for yourself if there are enough studies to rule out the maternal-fetal transmission of Lyme disease.

They knew this in 2005:

Lyme disease [fact sheet] Click Here to View Actual Document
Publisher: Utah. Office of Epidemiology ; Utah. Dept. of Health
Date Published: 2005
Pages: 2 p.
Identifier: http://utah.ptfs.com/awweb/guest.jsp?smd=1&cl=all_lib&lb_document_id=15456

"Who gets Lyme disease?Lyme disease is found mostly in the eastern and mid-west regions of the United States. Most people that have Lyme disease in Utah were actually bitten by a tick from another state. Recently Utahns have acquired Lyme disease from ticks in Utah. Anyone can get Lyme disease, especially campers, hikers, and others who frequent wooded, brushy, and grassy places where ticks are found.

How does Lyme disease spread? People get Lyme disease from the bite of an infected tick."

"Some people become ill after crushing a tick with their hands because the tick's body fluids get
into cuts or scratches in the skin. There is no evidence of natural person-to-person transmission. However, it has been reported that pregnant women have transferred the bacteria to their fetus. Also, infections from blood transfusions have been reported."

In our Republican state of Utah transmission to a "fetus" was not considered person-to-person transmission. I wonder at what stage it would be considered person-to-person.

"Late disease:
Arthritis is the typical manifestation of late disease. Since only 80% of cases have a visible acute (or early localized) presentation, late disease may be the first indicator of Lyme disease."

"PCR may have adequate sensitivity and specificity (depending upon the laboratory), but is not widely offered."

Really? PCR positive results of my family member were denied. Perhaps they don't like the CLIA certified, Medicare/Medicaid certified laboratory Igenex who performed the testing.

"Epidemiology:
Utah has a tick vector for Lyme disease, Ixodes pacificus. There is now definite proof that Lyme disease can be acquired in Utah. Lyme disease should be considered for individuals with appropriate clinical presentation and test results."

The addition of "test results" goes against the CDC criteria that Lyme disease is a "clinical diagnosis." Lab tests are supportive, but not required in the diagnosis. The State of Utah, however, has been fooled by the IDSA into believing that lab results are required.

"Vectorborne/Zoonotic Diseases
Vectorborne/Zoonotic Diseases are those diseases transmitted via an animal or insect. Vectorborne/Zoonotic diseases do occur in Davis County."
What: In 2008, Davis County had seven cases reported of vectorborne/zoonotic diseases. Lyme disease was the most commonly reported disease in this category."

"The testing for Lyme disease is highly sensitive but not very specific. It requires a clinical picture consistent with the disease in order to be confirmed as a true case."
Not surprisingly, the same year the IDSA came out with it's flawed guidelines, 2006, this is what we found our health department saying:

"Disease Description:
Lyme disease is caused by the spirochete Borrelia burgdorferi, which is transmitted by the bite of infected Ixodes ticks. In the U.S. exposure to Lyme disease is common in the northeastern states, Atlantic coastal states, and the upper Midwest.
During 2006, there were no cases of Lyme Disease reported in Davis County. However, 6 suspect cases were reported. All 6 cases were investigated and ruled out."

In 2008 Lyme Vaccines were covered with a $5 copay for members of the Primary Care Network. Why would Utah cover a Lyme vaccine for its insured if we have no Lyme in Utah? Which vaccine are they using? LYMErix was taken off the market. What is this vaccine they speak of?

Member guide : PCN (Primary Care Network) Click Here for the Actual Document
Publisher: Utah Dept. of Health
Date Published: 2008
Pages: 40 p.
Description: Member guide for Utah's PCN (Primary Care Network).
External Link: http://www.health.utah.gov/pcn/pdf/PCNMemberGuideEng.pdf

"Immunizations
PCN covers these adult immunizations:
• Chicken pox (Varicella)
• Flu (Influenza)
• Hepatitis A
• Hepatitis B
• Hepatitis A & B combined
• Lyme disease
• MMR
• Pneumonia
• Tetanus
• Tetanus & diphtheria
• Rabies"

I would like to know exactly where they got this vaccine. Who is the manufacturer and why are they offering a vaccine in a state with no Lyme disease?

Building a healthy worksite : a guide to lower health care costs and more productive employees
Publisher: Utah. Dept. of Health ; Utah. Bureau of Health Promotion
Date Published: 2009
Pages: 68 p.

Description: Getting started in worksite health promotion can be a daunting task, but with a new toolkit produced by the Utah Department of Health it doesn't have to be. This new guide provides step by step instruction on how to start a program, identify target areas, and improve areas of concern if you are just beginning, or have a program already in place.
External Link: http://health.utah.gov/worksitewellness/pdfs/Worksite_Toolkit.pdf

"Please indicate how likely you would be to participate in each of the following programs if they were offered at work during the next year.
f) Walk-Fit Programs 1 2 3 4
a) Flu Shots 1 2 3 4
b) Tetanus Shots 1 2 3 4
c) Lyme Disease Vaccine 1 2 3 4"

Yikes! I wonder if the Utah Health Department actually gave out the LymeRix vaccine, the very same vaccine pulled from the market by the FDA because there was not enough "demand." Or maybe it was pulled because the vaccine caused severe arthritis and autoimmune reactions in 1/3rd of the recipients due to a gene they carried called HLADR4. Maybe our very own health department could be liable if they admit Lyme disease exists in Utah and, therefore, they may have indeed given these people Lyme disease and/or an autoimmune reaction. Perhaps they did indeed vaccinate some individuals. But again, why are they vaccinating for a disease that does not exist in Utah? So many inconsistencies and contradictions.

Why would Lyme be a differential diagnosis in the following if Utah does not have Lyme?

Arbovirus, including SLE, Dengue, Yellow Fever : Utah public health - disease investigation plans
Publisher: Utah. Office of Epidemiology ; Utah. Dept. of Health
Date Published: 2007
Pages: 11 p.
External Link: http://health.utah.gov/epi/diseases/arboviral/plan/ArboviralDzPlan101207.pdf

"UPHL: UPHL will act as a referral agent to the CDC for confirmation of arboviruses outside of WNV and SLE."

"Differential Diagnosis:

Bartonellosis Cytomegalovirus Herpes Simplex Histoplasmosis Leptospirosis Lyme Disease Malaria Meningitis Mycoplasma Infections Naegleria Infection Rheumatoid Arthritis St. Louis Encephalitis Systemic Lupus Erythematosus Toxoplasmosis Tuberculosis Venezuelan Encephalitis West Nile Encephalitis"

Notice how the Utah Health Departments have back pedaled from their previous statements? Who or what made our Health Department back pedal and now deny the existence of Lyme in Utah? All of these documents can be located at their own website: Utah Department of Health. I never expect you to take my word for it. I expect you to find out for yourself.

Another "Alleged" Case of Lyme in Utah

2010-09-10T14:37:00.003-06:00

I was in contact today with a person who will remain nameless for privacy reasons. We live in the same city. Imagine that. That puts the Lyme tally for my city up to three CDC positive, one probable and one suspected, and those are just the ones I am aware of. We both live within four miles of Lehi where a larger cluster of Lyme broke out in 2009. Of that cluster I know that at least two of them are CDC positive. I don't recall what the others lab results were. All of us to date have been denied a diagnosis. Some were given the diagnosis of fibromyalgia, a disease for which there is still no known cause, and a category many Lymies are given. It's the diagnosis of "I don't know what you have so let's call it fibromyalgia." I was tested for fibro and had none of the trigger points, though one "Lyme" physician put it in the records because he couldn't put down Lyme for "insurance purposes." I haven't been back to that physician because I didn't agree with his type of treatment, but I fully understand the reasoning in putting down fibromyalgia. Unfortunately, "for insurance purposes" I can't recall the doctor's name. Little legal flare for giggles.

I will use the word, "alleged" Lyme disease because this new person has yet to test for Lyme. However, Lyme is and always has been a clinical diagnosis. Laboratory data was supposed to be used only as supportive. A negative test does not rule out Lyme disease. The IDSA took the disease and wrote the 2006 Lyme guidelines in legal terms that could easily be used by insurance companies to deny treatment to persons with Lyme disease.

The person I spoke with today had many similar symptoms as myself. This person's symptoms began back in October of 2009. We spoke very briefly so I'm sure this is not the full list. The following is what I remember from our conversation:

Scalp extremely tender to the touch
Severe daily headache for a year
Migrating weakness
Migrating pain
Numerous lesions on MRI scans
Negative spinal tap for Multiple Sclerosis
Negative for other causes of lesions in the brain
Visit to the ER for heart-attack like symptoms, blood pressure elevated but no sign of heart attack

My scalp was extremely tender to the touch when my symptoms first began but I overlooked it because so many other aches and pains were occurring at this time, along with the focal-type seizures. The dog that barks the loudest gets the bone. Is that the saying? Har Har. In the past two weeks this tender scalp did return but I only recall it lasting for one day and it was not as severe as the summer of 2009. Unfortunately, I don't recall if this was shortly after I began the Levaquin or before. I was experiencing a bit more joint pain and brain fog this past month before the Levaquin so it could have been at that time.

Weakness was and is still huge for me. I have improved about 40-50% in regards to the weakness. Because I don't work out as often as I did, it's difficult to tell how bad it is. I need to work out again.

If there is one symptom that really distinguishes Lyme from other diagnoses, it is the migrating pain. I recall having painful legs and cramps in my calves. The next month it would disappear and move to the thighs and another time it would be the arms and shoulder blades. This is unusual in diseases but not in Lyme.

I had one small white matter lesion on my brain when an MRI was performed shortly after my diagnosis. However, the MRI states that it may be "artifact" and I did not return for a repeat MRI. I should probably follow up on that. I am more concerned about Lyme patients with these lesions. It would imply to me -- though I am not a medical doctor and my opinion should be taken with that in mind -- that they are more likely to suffer from serious neurological symptoms. This means not only the pain that comes along with that but the mood disturbances that can occur. The bacteria is literally attacking your brain.

Your brain is like Windows XP or Vista. It's the operating system for your entire body, including your heart. Lyme in the brain is literally like a computer virus. I will send mixed messages, incorrect messages or doesn't send messages at all. It can disrupt the signal your brain sends out to remind you to breathe, and you know the result of that. People with lesions in the brain are the patients I want to rush to the doctor and plug into in IV right away. I fear for them most, but I know much can be saved and reversed if they receive the proper treatment in time.

The last symptom, the heart-attack symptom is probably the most specific one we share. This was the most scarey for me. It was during the first six to eight months of my illness that I experienced the most severe chest pain and finally the one that brought me to the ER on the night of my and my husband's anniversary. It was a lovely date we had. It resulted in tachycardia, high blood pressure, high white blood count with a high neutrophil count and eventually a GERD cocktail and the release with the words, "We don't know what caused your problem." My blood pressure was 145 over 80 at the ER.

At the very same hospital only one week before when I was having an endoscopy, my blood pressure was 100 over 60. The endoscopy showed nothing in regards to GERD. I continued the Prevacid as suggested by my doctor. One per day seems to help a bit because no doubt I have some acid, but in the end the chest pain only discontinued after four months of treatment for Lyme disease. 1 1/2 years on prescription Prevacid two times a day with the addition of another acid reflux medication inbetween on bad days and I still had not gone a day without chest pain except when I was on antibiotics.

I am still in treatment and still improving slowly but surely. I do not know when treatment will cease and I am fine to continue until I am cured or until my body gives out. I want to be as close to normal as I can be. This is the crime when it comes to Lyme. You sound the warning call to physicians in your area. You are told "it doesn't exist here." You are told, "Your test is positive," only to be later told, "It was a false positive."

The Utah County Health Department denies numbers of cases -- some of which testified personally to them at the Lehi City Meeting in March 2010. They later send samples of blood for those who are positive directly to the CDC for "further testing." We still await those results with no expectations. I have read what the CDC did with patients in Missouri. They too were denied a diagnosis and told it was some other tick-borne illness, though the rash and symptoms were identical to those of Lyme disease.

So while we wait to be vindicated, more and more people are becoming sick and debilitated and this disease marches on like army ants picking up more victims on it's way. This IS where we are in medicine in regards to Lyme disease. It is the truth, and one I cannot deny because I live with it. I KNOW it to be true. I would sooner go to my grave with these doctors believing I was mentally ill then go to my grave lying about what I know is true. I do fear God, but not in the way you may think. I fear lying about something I know to be true and having to face him when I die and have him ask me why I lied. The only answer I could give for lying is that I was more concerned about my peer's opinions than I was of God's opinion of me. One is significantly more important. I hope you can guess which one it is. "Semper Fi!"

Lyme is not Sublime

2010-09-05T17:48:00.001-06:00

Just an update. The Levaquin seems to be working wonders on my burning hands and feet. I'm finding myself colder more often than I used to be. The burning in my hands and feet has decreased substantially. I find myself having no side affects from the Levaquin thus far, aside from some muscle aches and tension shortly after I take the antibiotics. I'm sure it is killing something. I have noticed that I'm a bit ornery lately. I don't feel like being social. Before Lyme if I was grouchy, I could pinpoint a reason. With Lyme, I am sometimes grouchy but I have no reason to be grouchy. I don't like that. I believe it's neurological or due to herxing so I imagine it will improve again with time, just as it did after the previous antibiotics killed off large loads of the bacteria.

I think I need to correct some things in my blog as well because after speaking to my LLMD, I find that even LLMDs don't operate the same way. The basics are very similar but there are still differences between physicians.

One difference is that not all LLMDs believe Lyme is chronic after a certain point in time. There are LLMDs who believe it can be cured, and others who believe you can only put it into remission. Yes, it is a difficult disease to cure, but done properly the disease can be erradicated. My doctor believes this and I concur because there are many who have dealt with the disease for years, were treated by an LLMD and have lived symptom free for years. Since there is no way to prove that Lyme is gone from the body, there is also no way to prove that it isn't. So it is just as plausible they truly were cured as it is that they are simply in remission. It's the same concept in cancer. Once remission is reached and the treatment is finalized, physicians must wait and see. There is no way for them to prove the cancer is gone 100%. Those who have remaining unseen cancer cells will relapse within months to years while those who are cured will live the rest of their lives cancer free -- assuming they are not struck again. Many survivors live the rest of their lives cancer free.

The other points I wanted to make are the usages of the terms LLMDs and ILADS-trained physicians. My physician pointed out to me that there isn't really such a thing, though I consider her both. Her point is that even those who prefer the ILADS philosophy as opposed to the IDSA philosophy, still have some differences of opinion on how to treat this disease. Some will attend several conferences with ILADS while another may take one or two courses never to return again, yet they will call themselves LLMDs or ILADS-trained. It's similar to some general dentists who claim to be "root canal specialists," though they have simply attended a 6-week course on root canals. True root canal specialists are called endodontists and they attend two to four more years of training at a university. I can assure you the endodontist has far more experience in treating your root canal than the general dentist does who attended a six-week seminar. A general dentist can call himself a root canal specialist, but legally he cannot call himself an endodontist because he has not attended a university program in endodontics.

So little is truly known about the bacteria, that there is still a lot of hypothesizing and theorizing among the most educated of those in Lyme. There isn't a physician of either philosophy that yet knows how to treat this disease with 100% accuracy. Borrelia Burgdorferi is an intelligent bacteria and it outsmarts even the best of scientists and researchers.

I think there is one thing that could distinguish very well an educated Lyme physician that is on the right path versus one who is not. It's my opinion that any Lyme physician who believes they know all the answers should be immediately dismissed as your physician. That physician is not being honest, and to date the only physician I have met that felt that way was the one physician I visited who was a member of the Infectious Diseases Society of America. Their guidelines alone, infer that they know everything about Lyme. Be wary of those doctors. If you believe the IDSA knows everything, then you have not educated yourself on Lyme disease. You have simply taken what was told to you and decided it was fact because you're too lazy to do your own research so you can verify which philosophy is more accurate.

You need to feel comfortable with your physician regardless of who they work for. Your research about Lyme and the knowledge of your physician should not be at odds. If it is, then it means one of you hasn't done your homework. If it's you, then do it. If you have honestly done your homework and you are still at odds, then chances are your physician hasn't done their homework.

Be careful in choosing a physician. Regardless of whose philosophy they follow, you will still need to read through the lines and check the details so you can be sure this physician is as trained as you are being told. Remember as well that many physicians who are new and just learning may say things that don't exactly correlate with your knowledge of Lyme, but as they learn more, their treatment and knowledge about the bacteria may increase and your knowledge and their knowledge may eventually come into alignment. A doctor may not necessarily be a bad doctor, but rather one who hasn't had time to fully grasp all the concepts in Lyme. They may be a novice who will later become a great Lyme doctor. Don't discount them entirely if they are new to the Lyme treating scene. They still have much more to learn. I've spent countless hours learning about this bacteria and poured over numerous studies, patient cases and stories, etc. and I still have so much more to learn about this bacteria. We can't expect a physician new to the Lyme scene to grasp it without having had both patient experience as well as time to review the science about this disease.

Anyone with Lyme disease knows that it is impossible for any person, physician or not, to fully grasp the reality of this disease if they have never had it. I would never have been able to grasp the seriousness of this disease if I didn't have it. I can grasp what cancer is like because my daughter went through it, but I can't grasp the aches and pains she endured. I can't grasp the effects of "chemobrain" because I've never experienced it. I can sympathize, but I cannot fully understand because I haven't been there. Don't expect a physician who has not been there to be able to fully grasp what this disease does to you. Do expect them to sympathize and do their best to help you.

Lyme & Levaquin

2010-08-31T11:58:00.000-06:00

I just began my fifth antibiotic last week. I've been put on Levaquin. Levaquin does have some serious side affects, albeit uncommon, but worth paying attention to. I was very nervous to start this medication. My doctor was very careful to warn me about the side affects. I have to limit the type of physical activity I do. It can cause tendon rupture, which if serious can cause permanent disability. I have taken it for seven days now with literally zero side affects other than the aches and pains in the shoulders -- from what I assume is the Levaquin killing off more bacteria. Surprisingly, my hands and feet stopped burning almost completely from the very first day I began the Levaquin. The burning has not resolved 100%, but I would say it has resolved at least 90% thus far. Of course I am not crossing my fingers because I do think maybe it was just a lucky week and the Levaquin had nothing to do with it. I have actually worn socks once or twice because my feet were cold. This was common before I became ill, but since the burning feet, socks have been out of the picture except during the winter and only on cold, cold days. I enjoy the cold tile immensely when my feet are burning. I'll keep my fingers crossed, just not too tightly.

Before starting the Levaquin, I did feel as if I had fallen back a bit. I don't know why the aches and pains were returning. I had such a good month or two that having the joint pain return in my knees and eventually my hips was a surprise. One always worries they will go back to what they used to be. The only explanations I can come up with are that we had some storms that week and a great amount of family stress with my sister's illness and my brother being diagnosed with Stage III-A melanoma. My nervous system does not handle stress well. The muscles in my body tense up. This is most obvious in my neck and shoulder area. It could be that the dropping barometric pressure caused my joints to ache. The other alternative is that my herxing is occurring farther apart than it used to -- which is a good sign. I have been so used to not having the obvious herxing reactions that I can no longer state for sure when I am herxing or when it is just aches and pains from what still needs to improve. They used to be so obvious that there was no doubt. Now, they are not as obvious, especially when it comes to my moods. The most prominent sign to me when I was herxing early on was the shift in my mood. I would get irritable and want to retreat from everyone. I would have to stay in bed because of the pain and fatigue. I could not shower because it took too much energy to stand up. I had to take baths along with pain medication because of the joint and muscle pain. I haven't taken a bath in about two months or more now because I haven't felt that terrible. But don't worry, I do shower. I no longer experience musical hallucinations, although I did have some brain fog during this last episode and I did think the phone was ringing at times it was not. I also hear a tap, tap, tap in my ears, but not so much the low or high-pitched sounds I used to hear.

Motivation is still one of my biggest complaints. This disease takes away motivation to do anything. There are days where I feel I can accomplish so much, but they are few, and then there are the days where I don't feel like doing anything. It sounds lazy because to the normal person it would be laziness, but it is a common complaint in Lyme. Perhaps it's the chemistry in your body being out of whack, I don't know. I have been told by my physician that it is the number one complaint that Lyme patients have. It's hard to see the ordinary every-day things as important, because they truly are not important. You sort of give up caring to some degree about the small things that most people do because "society expects it of you." I don't care about fitting in. It's too much work and it's not important to me.

I have much more to write but I have no motivation to continue today, ha ha! Happy Lyming -- that's an oxymoron, I think.

CD57 Count and Lyme Disease

2010-08-17T23:41:00.001-06:00

To date the only disease known to LOWER the CD57 count is Lyme Disease. Other diseases can affect this count, however it is in the opposite direction. Levels of CD57 rise in these other diseases.

So, if you have symptoms of Lyme and a low-normal or low CD57 count, it should raise a red flag. My CD57 count was 34 before I began treatment. When I retested seven months later, this count had risen to 100. The fact that my count has risen means I am improving, though it is still not where the doctor would like it to be. Normal values are 60-360. Physicians prefer to see this count in the 200 range. A physician not educated in Lyme is unlikely to take this test at all unless they expect those levels to be high for another disease.

A Lyme literate physician is likely to request this test, especially if the diagnosis of Lyme is difficult to make in a patient. It could make or break the diagnosis depending on the results. It is an expensive test, so it is given when necessary and not frequently repeated. It also helps the physician determine the likelihood of relapse in a patient who is finishing up their treatment. A lower CD57 count following treatment indicates a higher relapse rate so the physician may choose to continue treatment until this count has risen.

Because it takes quite a while for CD57 counts to drop, it is believed that once a person does test low on the CD57 count, their disease is already late-stage and chronic in nature. The goal at that point is to get the disease into remission as it is impossible to tell if the patient is cured even if they have no residual symptoms. The spirochete only needs six months in the human body to go from a spirochete to an L-form and into cyst form. It is the cyst form that is able to hide from antibiotics as well as the immune system. Flagyl is one of a few antibiotics that can break these cyst forms, but it is not 100% effective against cysts. If the bacteria remains in cyst form, the patient will have no symptoms, but can emerge at a later date and cause a flare-up of the symptoms.

Utah County Health Department Offering Retesting for Lyme Disease

2010-08-13T12:32:00.006-06:00

Our family received a letter from Utah County Health Department offering retesting for individuals who met specific criteria. I phoned the department and was advised that only those who tested positive -- ELISA and Western Blot IgM or IgG and those who tested positive by PCR were candidates. There are three in my family who have tested positive through these methods. The catch here is that PCR, which stands for polymerase chain reaction, is a test that didn't find antibodies, it actually found the bacteria's DNA! Yes, they saw the DNA of Borrelia Burgdorferi in the PCR test of one of my family members. Yet they still want to deny that it is Lyme disease. It looked like a snake, it walked like a snake, (it stained like a snake) but they are still telling us it wasn't a snake.

We all agreed to be retested though I put very little weight on the testing due to the history with Lyme disease. The samples are being sent directly to the CDC to be tested again by ELISA, Western Blot and a C6 Peptide. The C6 peptide is touted as the "gold standard" in testing for Lyme. Unfortunately, it too has only a 50% accuracy rate, which is less accurate than my already positive five times Western Blot. The Western Blot has a 95% accuracy rate. This means in order for mine to be a false positive, I would have to have fallen into that 5% inaccuracy rate five times now. They believe it is more likely I have fallen five times into a 5% category rather than the 95% category. We're still fighting Goliath.

I will give the Utah County Health Department credit for attempting to do something, though I still question their motives. My first assumption -- because I have become very distrustful of certain physicians and government organizations -- is that they are doing it just to say they did it. Eventually they will fall back to the previous words we have already heard, "We don't know what they have, but it isn't Lyme." And at that point while Utah citizens see a media picture that the health department is doing what they can, what they don't see is that after that media statement, we will once again be left to our own devices with no more support from the health department, and I expect further testing or researching in this controversy will halt. I feel once the public noose is off their neck the story will once again disappear into oblivion until more people are sick.

It has been months since the media reported the outbreak in Lehi, yet they are just now offering this new testing. A weakened immune system as well as previous antibiotic treatment can affect the testing and cause false negatives to occur. I am assuming the time it took to offer the additional testing might certainly not be in our favor. I want to be hopeful that they will help us but I'm two years into this horrible disease and the only relief I have ever seen has come from an LLMD trained by ILADS. So you'll have to pardon me if I seem negative. This is one disease that requires you to walk in my shoes for you to fully comprehend. And now that I have told you for the first time that I am not the only family member who is ill, then you can understand that I am not only in "me" mode, I am in "mama bear" mode.

Not only did they trespass against me, they came into my den and harmed my cubs and there is nothing worse that you could do to a mother. I will be okay if life to this point is my experience but it is not okay with me if you say that this is just my children's fate. NO, THAT IS NOT OKAY.

The nurse, Lisa, was very nice. I have always liked her. She is doing the best she can. She certainly has no control over the health department. She is doing her job just like the rest of us. I did bring up the yet unidentified "unknown strain of Rickettsia" that Camp Williams found around 2006. She was aware of this, and I was hopeful the CDC and Utah County Health Department might actually look into it -- though she did not at any time imply they would. The only implication I felt that she gave was that they wanted to find out what it was that was making us all sick -- which basically meant to me that they were still not going to admit it could be Lyme disease. Either way, I'm aware of the fact that the only thing that has helped me thus far is the antibiotics. So whether they believe it is Lyme or some other bacteria, I can tell you one thing, it is vicious and antibiotics are the only thing that have helped me thus far.

I'm crossing my fingers but not too tightly. It's easier to expect the worst than to be let down again and again. It's the experience we all have with Lyme disease. You learn to be hopeful, but not too hopeful. That way you don't cry or go into depression when you are told once again, "We don't know what it is but it isn't Lyme."

Yes, I would love to proven wrong. I would love to be told, "It isn't Lyme, but it is" (fill in the blank) assuming there were a treatment for it. Where there is a treatment there is hope. Where there is unknown there is nothing. And that's my tout for today.

Into my mind popped the lyrics, "Carry on my wayward sons, they'll be peace when you are done, Lay your weary head to rest, don't you cry no more." I have to laugh because it's a rock song, lol. ha! ha! It's how I entertain myself.

Stress + Lyme = Slyme

2010-08-11T14:53:00.000-06:00

I'm feeling stressed out this past little while. I picked up more work at church, which is fine but it seems just when you do that, other things happen. I am likely herxing though they are becoming much more mild and more difficult to actually call a herx. The only reason I could really pin it down was because of the two days of insomnia and the pain in my knees and toe joints. I haven't had any hip pain for a while (knock on wood).

Two close extended family members have had surgery this week, one for malignant melanoma and the other for a serious knee problem, and my sister was in the hospital with pneumonia which she has had several times in the past. This shouldn't stress me out, but it does because I know I need to contact them and offer support and sympathy. I think I come off as not caring, but I keep forgetting I need to call. I'm not trying to forget. It's just if I do not write it down, it is in my mind one minute and gone the next. I worry because I don't know if they have expectations that may be difficult for me to fulfill. I don't have the energy this week. Our son started football which means he's up at 6 am. My husband has graciously done the majority of the waking and taking, and a carpool has relieved a lot of that stress now. I woke him up yesterday at 6am and by 8:30 am I was back in bed sleeping until 10:30. I couldn't stay awake.

Then there is always the good news stress. It shouldn't be stressful because it is, after all, good news. I have a sister-in-law who just had her 2nd baby and a close friend who was due last week but still pregnant as we speak. Along with the ill, I've got to make rounds for the happy moments and I'm feeling overwhelmed. I just hope they will all forgive me because I know I'm going to fall short.

I just got the news yesterday that a cousin of mine lost her 2nd husband yesterday. This is so tragic because she lost her 1st husband and young daughter in a car accident years ago. I cannot imagine what she is going through. I don't know how she does it. I can't imagine the pain and suffering she has endured in her life. I hope she is able to carry on. She has been so strong in the past and perhaps that first experience will remind her that she can make it through again.

My final thought for today is that we have to be cognizant that everyone has some difficulty in their lives and we may not always be aware of those difficulties but we have to be so careful not to get upset when they don't meet our expectations. I hope I can be careful with expectations of others because I don't always know what difficulties they are struggling with.

Lyme has Been in Utah for a Long Time.....

2010-08-07T20:36:00.001-06:00

Lyme Cases in Utah

JEFFREY L. JONES, MD, a resident in preventive medicine at the California Department of Health Services
made attempts to educate our physicians here about Lyme disease when he responded to an article in the Western Journal of Medicine back in 1985. Did they listen back then?

"Differential Diagnosis of 'Pseudoseptic'Arthritis

TO THE EDITOR: The recent description of five cases of "pseudoseptic" arthritis by Call and colleagues and the ensuing letter by Loge prompted this communication. Call and co-workers, of the University of Utah School of Medicine, reported five cases of classical rheumatoid arthritis with a superimposed clinical syndrome that mimics septic arthritis but in which microbiological cultures were negative. They concluded that the pathogenesis of "pseudoseptic" arthritis remains unexplained. They considered multiple conditions in seeking an explanation for the cases of "pseudoseptic" arthritis; however, no consideration was given to Lyme disease.
Although it would be unusual, it is possible that a patient with classical rheumatoid arthritis could also have Lyme disease. Lyme disease has presented with inflammatory oligoarticular arthritis without preceding
rash. Frequently the patient is unaware ofa tick bite. Synovial fluid leukocyte counts range up to 100,000 cells per ul with most cells being polymorphonuclear leukocytes. The joint abnormalities may be brief and recurrent and may respond to antibiotics.

Culture of the Lyme disease agent, Borrelia burgdorferi, requires special techniques. Two cases of Lyme disease have been reported in Utah. Many cases, however, may go unrecognized in Utah, as is suspected in other states. The tick vector of Lyme disease in California, Ixodes Pacificus, is known to reside in Utah. Although it is possible Lyme disease plays a role in the cases presented by Call and associates, it is more the intent of this letter to mention Lyme disease for consideration,in the differential diagnosis of septic or "pseudoseptic" arthritis.

JEFFREY L. JONES, MD
Resident in Preventive Medicine
California Department of Health Services
626 Chetland Rd
San Leandro, C4 94577
REFERENCES

1. Call RS, Ward JR, Samuelson CO Jr: 'Pseudoseptic' arthritis in patients with
rheumatoid arthritis. WestJ Med 1985 Oct; 143:471-473
2. Loge RV: 'Pseudoseptic' arthritis (Correspondence). West J Med 1986 Jan;
144:87-88"

I would say they ignored his editorial comment considering the U of U Rheumatology also missed my diagnosis of Lyme disease, and to date we still have health officials denying there is Lyme in Utah.

A Positive and Informative Day at the Utah Lyme Support Group

2010-08-07T19:47:00.003-06:00

Don't be fooled by the title. When I say positive, it means there was a lot of good information given today at the Lyme support group. There was also the message that Lyme at a certain stage is chronic and cannot be cured but rather put into remission.

Ascertaining whether or not you are at this chronic stage is critical in order for you to receive the proper treatment. Each stage of the disease requires different types of antibiotics due to their ability to kill spirochete, L-form or cyst form. It may require antibiotics for all three of these forms at the same time. Unfortunately, the Lyme spirochete is at a chronic stage by the time it has reached cyst form which means about six months from the start of infection. Since so many Lyme disease patients are not diagnosed within this six-month period, many go on to the chronic stages. Opinions among even our so-called "ILADS-trained" physicians do differ in this aspect. Some believe it is chronic and must be put into remission while others believe it can be cured but the treatment may be long and difficult. I prefer the second option myself.

We had a physician speak to us today who is just now learning the ropes and has done some studies with ILADS but certainly needs more time to learn. The doctor gave a great presentation about this little bug and why it is such a devious critter. It was so nice to have the doc educate all of us on what this disease can do and the appropriate course of action -- which is not the same for everyone. I cannot stress enough how important it is for every Lyme patient to clearly and fully understand what this bacteria is capable of. Anyone can give you the information, but for you to really understand YOU MUST read the literature yourself. You need to know all the possibilities of what could happen to you during a herxheimer. You need to know what is considered normal and what is not considered normal.

If you don't do your research, you will likely give up on the treatment or make excuses as to why certain symptoms are occurring. Your family members need to be aware of all the symptoms Lyme disease can cause. If you do not educate yourself on this disease, you will fall prey again to the physicians who told you "It's not Lyme." They are far too happy to throw you back into the snake pit if you're willing to accept it.

This may sound harsh, but I feel I need to say it...Spouses who do not fully research this disease (in my opinion) are not supportive and just plain do not care enough about their wife/husband. These are the spouses that will cave under the pressure of Lyme treatment and the patient will end up suffering because of it. They will choose to accept alternative diagnoses because they can't deal with this disease and alternative diagnoses are generally less expensive to treat. Death is even less expensive than the alternative diagnoses. This disease is complicated not only because of the physical problems that occur but because of the problems it can cause in the brain as well. If your loved one is affected with neurological Lyme, it can change their entire personality and they can become difficult to deal with. Initial stages of treatment can accentuate all of these symptoms, and while they may not be thinking clearly, they do need someone who is and who will care for them until these symptoms subside. You may have to be the one who calls their Lyme doctor when they are too ill to do it themselves, and you will have to learn not to take some things personally during this time.

The one clear-cut point the doc brought across is that antibiotics are necessary for two reasons. One, to kill the bug; and two, they help your immune system so it can once again put this monster into remission and/or cure it. By the time you are suffering with the debilitating effects of Lyme, your immune system has usually bottomed out. This is also why you will have difficulty testing positive. You can't expect to test positive on a Lyme test if your body isn't producing enough antibodies. The tests rely on these antibodies. A little tip, Cat's Claw may help the CD57 count. If your CD57 count goes up, you are more likely to have an antibody response and a positive Lyme test.

I have to say of all the meetings the Lyme support group has held, this was my personal favorite. I actually came away feeling there was hope -- not necessarily for a cure -- but hope that you can get well and carry this bug in your system the same way you already carry e-coli and other various bacterias. The difference is that our immune systems are able to keep them in check. If you can keep Lyme in check, then yes, you can live with Lyme just the same way we live with these other bacterias. This is not to say that I don't believe a cure is out there. I do believe there is a cure, but until the funding is given to the right people for the right research, we will have to rely on the honest physicians who are doing their best to help us. Lorenzo's Oil is the perfect example of parents who really loved their child and went to every length possible to save him from an "incurable" disease. If you haven't seen the movie, I recommend you do.

The key to this disease for now is to get your immune system to the point that it will hold the Borrelia in solitary confinement or erradicate it and to retreat if there is a relapse. We do it with cancer.

I can't begin to tell you how much I appreciate that this doctor is willing to help those of us in Utah. It won't be long before we have more treating physicians. The downside is always that these physicians, for the most part, cannot take insurance because it is the insurance who likes to cause problems for the doctor for treating Lyme disease. This doctor does, however, start out with the oral antibiotics and moves to IV only if there is obvious central nervous system damage. The cost for oral antibiotics is much, much less than IV. My doctor is out of state. I have paid all of the bills for visits as well as phone consults, but to date my insurance has covered all of my prescriptions, excluding my azithromycin. They would cover that too if I wanted to come back every six days to the pharmacy for my refill. They refuse to give me more than six pills at a time. Pfffft! As if you would take more than you were supposed to just for fun!

One week of IV Rocephin is $5,000. So next time you complain about your Lyme doc costing so much, try blaming the pharmaceutical companies. I haven't looked into why Rocephin costs so much, but I imagine it could be produced at a much cheaper cost if enough powerful people cared.

So I'm pleased with today's meeting. It may not have seemed positive for others, but until you reach a point where you are functioning again, it's impossible to think about actually living with this nasty bacteria in your body. Today was the largest group ever and we were still missing several who had attended in the past. The group is growing and will continue to grow because there is Lyme disease in Utah.

The Emperor Has No Clothes!

I Like to Fool Myself

2010-07-28T00:49:00.000-06:00

So my previous post says I will stay on antibiotics for life if I have to. As I think about this, I realize I have to get realistic about this disease. I hope to be cured, though I know chronic Lyme is difficult to treat. I know antibiotics give me quality of life but I know long term it may cause some problems that will force me to seek other treatment options. I hope when I quit the antibiotics that I won't relapse, but I know that I very well could.
I don't like this disease one bit. I wouldn't wish it on my worst enemy.

I lied, I probably would wish it on my worst enemy, but to date I don't have a worst enemy because I don't really hate people. Someone may annoy me, but I find it difficult to really hate someone. I do wish Shapiro and Wormser and their Nazi gang of physicians would get Lyme disease, but my conscience will only allow me to wish the worst of the disease on them for approximately one month because I couldn't permanently wish such a terrible thing on someone. Plus it would make me like them.

I know I've said this before, but I hope it will be in my lifetime that I will get to look into the eyes of those people who ignored this disease and just pass along that look that says, "I told you so." It's difficult to know that there are professionals who know the truth but will do nothing about it. I'm having a pity party tonight, and I'd like to tell you why, but because it involves information that isn't directly mine to share, I will wait until a more appropriate time.

Would You Like Some Fries with Your Shake?

2010-07-27T01:22:00.000-06:00

Life is still good for me. My symptoms continue to improve though it seems I am probably stuck with some, perhaps for life. Today I cut branches on our trees in the yard. I suppose I overdid it a bit. While on the phone with my mother my right arm was folded across my lap and my hand started to shake uncontrollably. I could tell the muscle was weak from having chopped the trees. It only lasted about 30 seconds and it happened twice within about 5 minutes and didn't do it again. I'm sure it's the damage the Lyme has caused to my nerves or muscles. Aside from that oddity, I still feel great compared to 7 months ago. I hope one day I'll be able to rid myself of the antibiotics but I'm prepared to stay on them for life if that is what I need to do to avoid going back to where I was.

Turn The Corner Foundation - The Fight Against Lyme Disease

2010-07-19T15:39:00.000-06:00

CDC wants Funding to Play Around AND Vote No For Jim Matheson

2010-07-13T17:55:00.000-06:00

On July 2, 2010 a letter was sent to the Senate Appropriations Committee asking for continued funding
for:
"$26.7 million for the vector-borne disease program at the Centers for Disease Control and Prevention (CDC) in FY 2011 to sustain the current funding level."

One might think that among the vector-borne diseases they were concerned with was the No.1 Vector-Borne disease in America, Lyme disease. Well, think again. Here is an excerpt from that letter which explains which diseases they are interested in:

"The undersigned organizations respectfully request The President’s proposal to cut the program in FY 2011 has the potential to leave the country ill-equipped to protect the public’s health against some of the world’s most prevalent emerging and existing mosquito and other vector-borne diseases, such as Dengue fever, Yellow fever, and West Nile Virus. In addition, the CDC estimates this cut in funding could lead to the job loss of 100 state and 24 CDC employees and near debilitation of the CDC's Dengue Branch in San Juan, Puerto Rico."

It is unbelievable that the IDSA (one of the undersigned to this letter) and remaining signers would dare leave out the name of the No.1 Vector-Borne disease in America. The CDC's own website shows the following statistics:

CDC LYME DISEASE STATISTICS:

CDC's Statistics on West Nile Virus 2009:

Totals	373	322	25	720	32
State	Encephalitis/ Meningitis	Fever	Other Clinical/Unspecified	Total	Fatalities
Arizona	12	8	0	20	0
Arkansas	6	0	0	6	1
California	63	45	4	112	4
Colorado	36	67	0	103	3
District of Columbia	2	0	0	2	0
Florida	2	0	1	3	0
Georgia	4	0	0	4	2
Idaho	5	26	7	38	2
Illinois	5	0	0	5	0
Indiana	2	2	0	4	1
Iowa	0	5	0	5	0
Kansas	4	9	0	13	0
Kentucky	3	0	0	3	0
Louisiana	10	11	0	21	0
Maryland	0	1	0	1	0
Michigan	1	0	0	1	0
Minnesota	1	3	0	4	0
Mississippi	31	22	0	53	5
Missouri	4	1	0	5	0
Montana	2	3	0	5	0
Nebraska	11	41	0	52	0
Nevada	7	4	1	12	0
New Jersey	3	0	0	3	0
New Mexico	5	2	1	8	1
New York	5	0	2	7	0
North Dakota	0	1	0	1	0
Ohio	0	2	0	2	0
Oklahoma	8	2	0	10	1
Oregon	0	8	3	11	0
South Carolina	2	0	1	3	0
South Dakota	6	15	0	21	0
Tennessee	4	5	0	9	1
Texas	93	22	0	115	9
Utah	1	1	0	2	0
Virginia	5	0	0	5	0
Washington	25	8	5	38	1
Wisconsin	1	0	0	1	0
Wyoming	4	8	0	12	1

ARE YOU KIDDING ME? WEST NILE VIRUS HAS A TOTAL OF 720 PER YEAR ACROSS THE U.S. AND LYME HAS 28,000 CONFIRMED AND 35,000 PROBABLE CASES BUT LYME WAS NOT MENTIONED AS ONE OF THE EMERGING VECTOR-BORNE INFECTIOUS DISEASES? CERTAINLY DENGUE FEVER MUST HAVE NUMBERS THEN, RIGHT? WRONG....

CDC's website on Dengue Fever:

366 total cases of Dengue Fever 2001-2002.

Well then it must be Yellow Fever that is the huge one, right -- the one that requires so many of our tax dollars. Think again:

CDC's Website on Yellow Fever:

Table 2-12. Countries with risk of yellow fever transmission¹

Africa			Central and South America
Angola Benin Burkina Faso Burundi Cameroon Central African Republic Chad² Congo, Republic of the Côte d’Ivoire Democratic Republic of the Congo Equatorial Guinea	Ethiopia Gabon The Gambia Ghana Guinea Guinea-Bissau Kenya Liberia Mali² Mauritania² Niger²	Nigeria Rwanda Sierra Leone São Tomé and Principe Senegal Somalia Sudan² Tanzania Togo Uganda	Argentina² Bolivia² Brazil² Colombia Ecuador² French Guiana Guyana Panama² Paraguay Peru² Suriname Trinidad and Tobago² Venezuela²

That's right. The U.S. isn't even listed as an area at risk for Yellow Fever transmission. We are at risk only if we travel to these higher risk areas or if someone should bring it to us. I was unable to find any U.S. statistics regarding numbers of people in the U.S. who were reported for Yellow Fever.

This is why they are asking for $26.7 million? 35,000 cases per year of Lyme disease and yet they want $26.7 million to study West Nile Virus, Dengue Fever and Yellow Fever?

Combined, the numbers of people reported to the CDC for Dengue & Yellow Fevers and West Nile Virus is a mere 1,056.

Lyme Disease was 10,000 per year in 1994 and in 2008 it was 35,000 and it has continued to rise.

I wonder how many IDSA physicians hold patents to the Yellow Fever vaccine or have some financial stake in these other diseases. It makes no sense. I'm a Republican and I'm all for research and progress in health care, but I'm going to have to support Obama on this round. I don't want $27.6 million to go to the CDC if they and the organizations who signed along with them refuse to acknowledge the No. 1 Vector-Borne disease in America. Our money is being wasted on special interests, not on facts. From 1994 to 2008 reported Lyme disease cases doubled and yet they still ignore this disease stating over and over that it's "Hard to get and easy to cure."

I think I will write my own letter in response to their financial demands.

I would rather spend it on appropriate health care that allows me to choose my physician and the treatment that is best for my condition with all the evidence in tow.

And now I have to put one more plug in or should I say out for Jim Matheson of Utah.

Vote NO for Jim Matheson. Until he repeals the STAAR Act -- which is in support of the IDSA's preferential treatment towards diseases they deem important -- he does not deserve our vote. He wants to put power into the hands of the Gadianton Robbers (aka IDSA) and take it away from the citizens and their physicians. The STAAR Act would allow the IDSA to put more money towards diseases they deem important while again ignoring the No. 1 Vector-Borne disease in America. This Act, however will not just affect Lyme disease. It will affect any disease that the IDSA decides isn't important to them. If it can happen with Lyme, they can do it to anyone.

Last but not least, I want to recognize two physicians (I'm sure there are a few more) who are members of the IDSA and who do have integrity. Those two are Joseph Jemsek, MD and Sam Donta, MD. Both treat chronic Lyme and both are against the 2006 IDSA guidelines. Both can be seen in the documentary Under Our Skin.

Under Our Skin: An Infectious New Film

2010-07-13T17:49:00.000-06:00

Under Our Skin: An Infectious New Film

Chronic Lyme News Stories

2010-07-10T16:31:00.002-06:00

These stories cover quite a bit of the symptoms of Lyme disease. Everyone experiences different symptoms but one Lyme patient can almost always identify another Lyme patient. It is in fact physicians who seem to have difficulty diagnosing Lyme due to the inaccurate IDSA guidelines created in 2006. Sam Donta, MD is in Angela's Lyme story. He is one of very few IDSA physicians who know this bacteria and what it's capable of doing. He can also be seen on the DVD movie Under Our Skin. He's a fantastic physician. I'm just grateful we have these physicians out there, even if their numbers may be small.

Angela's Lyme Story

Bridget's Lyme Story

Rhonda's Lyme Story

Terry's Lyme Story

Lyme Disease and Utah

2010-07-09T21:05:00.003-06:00

Studies on the Lyme bacteria, Borrelia Burgdorferi, have shown that it can move into several forms when threatened by antibiotics or the immune system. Some of these forms are spirochetal, L-form (cell-wall deficient forms) and cysts. In L-form they shed their cell walls and along with that their proteins that allow our immune systems to identify them. In cyst form they can lie dormant until the environment is once again beneficial for them. They are best killed in spirochetal form. They are more difficult to kill in cyst form and L-form which is why the types of antibiotics and the amount of time treated is very important in Lyme disease. This is the reason LLMDs will use several types of antibiotics for an extended period of time.

Doxycycline is the medication the IDSA recommends for the treatment of early Lyme. Doxycycline is great as long as the spirochete stays in the form for which doxycycline is effective. Unfortunately, for those who are diagnosed late, the Borrelia may have already converted to these different forms for which doxycycline cannot penetrate. Our scientists in Utah know this.

Why is it that the Utah County Health Department and Joseph K. Miner, M.D. don't know this? He says he spoke to the U of U IDSA physicians. Why go to the source that is at the heart of the controversy? Perhaps this was the mistake he made. He needed to speak with Sherwood Casjens.

"Sherwood Casjens, PhD, University of Utah School of Medicine, and a renowned genome team including Claire Fraser, PhD, President, The Institute of Genomic Research (TIGR), presented new information that Borrelia burgforferi, the spiral-shaped bacteria that cause Lyme disease, are able to freely exchange genetic material among themselves, potentially making diagnosis and treatment difficult. The team of researchers concluded that frequent recombination may help the bacteria survive in ticks and in the animals they feed on, including humans. The research was published in the Sept. 28 issue of The Proceedings of the National Academy of Sciences."

One doesn't have to be a rocket scientist to figure out that if Borrelia exchange genetic information, this also makes our tests less accurate in diagnosing Lyme. This further adds weight to the stance that ILADS -- (International Lyme and Associated Diseases Society) -- takes in regards to Lyme being a clinical diagnosis with lab work serving as supportive.

It's malpractice at its finest to say that one can only be diagnosed with Lyme disease based on our current lab tests. Even when you do test positive, as is the case for many Utahns, you are still told, "It's a false positive."

Crohn's Disease, Chronic Fatigue, Fibromyalgia, Multiple Sclerosis, Depression, Scleroderma and Lyme Disease

2010-07-07T14:30:00.003-06:00

If you have been diagnosed with multiple sclerosis, you need to see this video:

Multiple Sclerosis or Lyme?

This is what is really going on not only in this country but in Canada as well. Yes, even healthy, strong, athletic people are brought down by Lyme disease. See the following video:

Healthy Doctor gets Lyme Disease but is Misdiagnosed with Crohn's

I always say, Lyme is a disease that will bring a lumberjack to his knees...and it will.

Canada has Lyme Disease

There is No Lyme in Canada.....I also have some land in Florida to sell you

Crohn's Disease, Chronic Fatigue, Fibromyalgia, Multiple Sclerosis and Depression can all be misdiagnosed when they are actually Lyme disease. See this video:

Misdiagnosis in Lyme Disease

Lyme, Pain & Insomnia

2010-07-05T05:29:00.000-06:00

Uggggghhhh, woke at 4 am. My hands and feet ache enough that it keeps me up. Took an ibuprofen at 4:10 am, but I've decided to stop trying to go back to sleep. It's easier to move around and hurt then lay there and hurt. I popped the MP3 in my ears but it isn't helping this time. Looks like I will spend part of my Monday in bed asleep once I get so tired I can fall asleep again. At night my feet burn. I have to keep the air conditioner on 71 degrees all night. Even at that temperature I wake up hot sometimes and my hair is wet. I'm like the pigs-in-a-blanket. My body will get cold so I want to put the blankets on but I have to leave my arms and my feet out, otherwise they will burn. Saturday night was the only night in the past few nights that I did not wake up around 4 or 5 in the morning. This is the only time I could not fall back asleep with some help from the MP3. The small joints are achey.

My left arm is aching. I'm expecting it will go into a full flare soon. I can already feel that it is weak. I'm going back to the vascular surgeon to have it tested again since it is that side that they found "mild arterial insufficiency." That and the aortic dilatation make me wonder if they aren't missing something there. I think I mentioned that last time it was aching so badly, I heard a very fast pulse in the palm of my hand that was not there previously. I only noticed it because I rested my head on that palm. The beat my husband and I heard was much faster than the actual beat of my heart. Yesterday when we stood in church to sing, I rested my left arm on the back of the bench in front of me. It didn't take much before that arm started to shake because it's weak. Something just isn't right with the muscles or blood vessels in that arm. I just wish they would figure it out. I'm not sure that it is the Lyme that is causing that problem entirely. I think the Lyme is attacking that problem because it's a weak area. Don't feel like typing anything else. I'm just sick of not sleeping. That alone can mess up your whole day because you just don't function well when you're walking around tired.

I'm Bored....

2010-07-02T21:40:00.000-06:00

I saw Eclipse. It was average. I thought the 2nd one was better. Like most of the girls, I found it very difficult to watch Jacob bare chested during most of the film (cough). Okay, so that part was good. Poor Bella, two good looking men fighting over her. Terrible predicament. You couldn't exactly lose no matter what choice you made. Everyone said the third movie was the best so of course I built it up and was disappointed. The first hour was slow...slow....slow. They needed to speed up some of the mushy stuff. Yeah, I like mush, but even us girls have our limits. I've decided I'm on Team Switzerland. I like them both.

So on to Lyme news. I've been tired but not terrible. I do keep waking up at 4:30 every morning. I have no idea why. I usually end up going downstairs to the couch, popping in the MP3 and falling asleep. I do this because when I wake up at 4:30 I tend to toss and turn and make noise and I'm trying to let my hubby sleep. Music really helps me when I'm having a hard time sleeping. I don't know why this is but I guess the old adage, "Music soothes the savage beast," rings true in the case of my Lyme. I hope the bacteria doesn't benefit from Beethoven like humans do. I don't want to help the little critters out.

I'm going sans pain pills starting today. I'm a little nervous because I worry I won't be able to function if the pain is worse than I expect, and at the same time it will be nice to say that I don't need them any longer. I'm hoping ibuprofen will take care of the pain, but we will see. I'm not entirely pain free. I just want to see if I can tolerate the pain I currently have or if ibuprofen will take care of it. I am most concerned about sitting through three hours of church. That tends to be difficult on my muscles and my back. I also worry about that scapula and arm pain. That I still consider to be one of the most painful symptoms. I hope it doesn't return anytime soon. We will see.

I have had erythromelalgia quite a bit the past week. My feet ache in the morning and both my hands and feet are more puffy than usual. I can particularly tell this with my hands because I'm unable to get my wedding ring on or off easily. I usually opt for a fatter fake ring during this time. I have sinus issues but I'm certain a lot of that is related to spring. I'm mostly annoyed that I can lay in bed until 2 am, feel very tired and finally fall asleep only to wake up at 4:30 and not be tired enough to fall asleep right away. Some of this is due to pain in my feet, but I don't think it's just the pain that's making me wake up. Most Lymies will tell you that the insomnia is one of the most troublesome symptoms. It's during these times you really hope people will not show up at your door in the morning. I don't want to explain to them why I'm still in my pajamas at 10 or 11 in the morning.

I did go on a jog/walk jog/walk two days ago. It was mostly a walk. My muscles are still not cooperating entirely -- the right knee and the left hip in particular. The muscles felt more tense and sore afterward and I was somewhat sore for the next few days. It's not the normal sore you get from not having worked out for a while. You get that in addition to the muscle cramping and joint pain. The consequences of my exercise were not as severe as in previous times so I still see improvement. I even considered going tonight, but I'm yawning already and the motivation is lacking right now. My feet are also burning and jogging will make them hotter and more swollen.

Cleaning the house and making dinner are no longer a hardship for me. I can do them now without worrying that I will need recovery time from being on my feet. They do not cause the amount of pain to my body that they previously did unless I am on my feet all day running about.

I confess too that I go outside without shoes. I walk in the grass. Sounds crazy I know, but I don't fear ticks. I feel almost rebellious. Sometimes I hope I do find a tick so I can have it tested. I'm tempted to put myself in harm's way to keep trying to prove the existence of Lyme in Utah. And since there is no Lyme in Utah, according to the Utah County Health Department, I have no risk of Lyme if I walk barefoot outside, right? I do fear the IDSA. I fear that they will continue to lie and more people will become sick. I fear this bacteria will be out of control and when the IDSA finally admits it's an epidemic, it may be too late. The $130 million dollars given to the Gadianton Robbers will still not have created new tests, better treatments and educated physicians. That money will have lined their pockets and the more than 400,000 people per year getting Lyme disease will be stuck with substandard care and a flip of a coin.

I've learned in Lyme that I'm not afraid of death. I am afraid of pain. I don't care what people think about me because I know two people who know the truth, me and God. I know that I, along with most people, take so many things for granted. I've learned that there is a continual fountain of empathy you can learn to have in life. I've learned that there are more physicians than I thought who really are there for the money. I've learned there are physicians who do care and who do listen and are physicians because they really do enjoy their jobs. I've learned to be my own advocate and to stand up for what I know to be true even when that means I may get negative attention. I've learned the value of the words, "Be still and know that I am God."