***2013 update: Reaction to Levaquin was different this past month. I became sicker. My erythro is still improved from 2008, but Levaquin seems to make me sicker now. Be cautious with Levaquin. It may be that my damaged CNS cannot tolerate Levaquin now but I don't want anyone to take this medication lightly based on my good experience in 2010.
I thought I would post pictures of what has been called, "erythromelalgia," by two different doctors, one a vascular surgeon and a rheumatologist concurring with him. I have not touched up these photos in any way. The first is my photo post melanoma removal. My feet don't like being messed with, and this is how it reacted when the melanoma was removed. Notice the veins in the hot foot as compared to the right side.
The above website quotes the definition of Erythromelalgia as the following:
Erythromelalgia is a rare condition that primarily affects the feet and, less commonly, the hands (extremities). It is characterized by intense, burning pain of affected extremities, severe redness (erythema), and increased skin temperature that may be episodic or almost continuous in nature. (The prefix "erythro-" denotes redness, "mel-" is a combining form meaning limb or limbs, and the suffix "-algia" indicates pain.) Although erythromelalgia typically affects both sides of the body (bilateral), it may sometimes involve only one side (unilateral). In addition, the disease course may be extremely variable from case to case. For example, in some individuals, symptom onset may be gradual (insidious), with the condition potentially remaining relatively mild for years. However, in others, it may have a sudden (acute) onset, possibly spreading and becoming severe over weeks."
"The specific underlying cause of erythromelalgia remains unknown. However, the condition is thought to result from vasomotor abnormalities or dysfunction in the normal narrowing (constriction) and widening (dilation) of the diameter (caliber) of certain blood vessels, leading to abnormalities of blood flow to the extremities. Erythromelalgia may be an isolated, primary condition or occur secondary to various underlying disorders..."
Since I had never experienced this before Summer of 2008 there was no doubt in my mind it was secondary to a primary cause. I read up on all of the known causes. While my symptoms partially fit some of the non-genetic causes of erythromelalgia, there were other symptoms that did not fit at all. Some of the primary causes were unilateral in nature. While mine began that way, to this day it is 90% bilateral when it occurs. To my knowledge, there is no family history, although if I carry the gene, perhaps the Lyme triggered it.
I recall vividly the first time I remember paying real attention to this symptom. It was the middle of May 2008. I was cleaning the house for my daughter's birthday party later that evening. After having been on my feet for a short time, my right footpad began to swell and eventually became very red and hot to the touch. By the end of the night I was anxious to get off my feet. They were killing me. I had my family members feel my right big toe and each one would tell me, "Wow, it's hot." From time to time I showed members of my family and friends who were around my hands and feet when symptoms flared. I needed witnesses. Going from doctor to doctor without any result, I felt it was just a matter of time before I would be thrown into the "snake pit," by doctors who just simply didn't have the necessary knowledge to diagnose me. I was getting the impression from physicians that they thought I might be overly dramatic about the "mono" I had been diagnosed with. They couldn't explain these additional symptoms, yet they weren't trying to find other causes. The only conclusion I could come to was that they felt I was indeed overly dramatic.
From this time on I began taking pictures and using my witnesses in case physicians decided I should be committed at some point. I've decided that being committed to a mental hospital could have its advantages. I could be the one sane person there yet everything I did that seemed odd to anyone could be considered insane, and I wouldn't have to take responsibility for it. That sounds like freedom in an odd way, and I like to imagine it is a place I could sleep as long as I want. I hope it isn't like the military where you are forced to be up at 5:30 a.m. and make your bed and so on. I might even be able to get some health care at the government's cost. If I'm insane and I steal antibiotics from the nurse's station, would I be responsible? A whole new world of opportunities is opening up for me as I entertain this thought. I could come up with all kinds of "insane" sane thoughts to aid me in my search for a cure and pull it off as if I were really insane. Okay, so it's just a thought and now that I'm posting it, I can't ever use it.
Back to the point of the story.....it's not uncommon for Lyme patients to be referred to psychiatrists for two reasons: One, Lyme disease can mimic nearly every mental disorder since it invades the brain and central nervous system and can do so in less than 48 hours upon infection; (Neuropsychiatric Complications in Lyme); Two, many physicians believe the patient is mentally ill, though their ability to diagnose mental illness is nearly as bad as their ability do diagnose Lyme. They prefer to label the patient rather than admit a lack of medical knowledge on their part. Because the physician can't diagnose the problem, the easiest thing to do is to blame the patient and send them to a psychiatrist. They consider you a problem patient. They don't have time to look into the cause of your ailment, so you either get a referral or a prescription.
We went to Disneyland in October 2009, shortly after my diagnosis and just before I began my first round of antibiotics. While I realize that my feet will not win a beauty contest, I think once they are Lyme free, they might stand a chance of looking semi-normal. The top picture is of my feet after walking one day at Disneyland. The bottom picture is one that I took a month earlier to document my swollen right footpad. They weren't hot in the lower photo, but for some reason it was swollen again. You know, I don't know what the small red striation is on my left foot in that top photo. It just showed up as the Lyme went along. It wasn't a scratch or a bruise. It has disappeared since treatment. Maybe this is a small striation/stretch mark you get with Bartonella. Walking was a nightmare, but I had adjusted to the pain to some degree and with a little help from Lortab I was able to make it through the trip. This was the first time since I became ill that I finally realized pain pills have to be taken in some cases. I had grown used to using the Medrol and did so because not only did it help my pain, it kept me off the doctor's and insurance company's "black list" as someone using pain pills. When I found out it was Lyme, I realized I would have to let go of my pride because Medrol was no longer an option.
***January 2010 update: more episodes of erythro in my ears now. The erythro can act up when I become upset, during an argument or heated debate. Maybe that is where the term, "heated argument" really comes from. More commonly it occurs as a result of a change in temperature. Five degrees is enough to set it off. It's as if my body's thermometer can't regulate or adapt quickly to a new climate. The only way for me to explain it is that it seems to absorb the instant heat but doesn't know how to release it, so I feel like I'm stuck in a heat cocoon with burning extremities. It's no wonder so many people are tempted to put their feet and hands into ice baths when these flares occur. I prefer a slightly cold shower. Ice baths can cause serious damage.
In 2013, I still prefer the temperature to remain at 73 degrees indoor during the day and 71 degrees at night with my feet and usually arms out of the covers. During flares, rooms above 75 degrees can cause extreme discomfort, not just to my extremities. My entire body feels overheated.These photos were taken the same day, same time frame. My left ear is hot and my right ear was mildly red but not noticeably burning like the left ear. I took these pictures because I felt one ear beginning to burn with no apparent trigger.
In the next picture I had just finished doing the dishes. Using hot water to rinse them causes my entire hands to go bright red as you see in the tips of my fingers. When I was finished with the dishes, I put some very cold lotion on which sits near the window. It was around 30 degrees outside. As I rubbed the lotion on my hands, this is the response I get with the mixing of the hot hands and the cold lotion. The blood gets trapped in my fingertips and this is the area where the burning occurs most. The same thing happens in the toes during flares. So while the whole hand or foot will react with redness, the burning sensations are 99% of the time in the tips of my fingers, toes and the outer ear edges, though ears flare up rarely. You can test this yourself. If you don't have erythro, the blood shouldn't remain trapped in your fingertips.
Mr. IDSA, ignores that I have tested positive four times by ELISA, three times by Western Blot IgM, two of these ELISA/IGM tests were through LabCorp and one was through Igenex. All three positive ELISA/IGM tests were requested by three different doctors, none of whom works with or is acquainted with the other. Each is affiliated with a different medical office, miles apart from each other, one in a different state altogether. The first ELISA was the one I ordered through PrivateMD on line in 2009. It is a self-pay laboratory ordering site. I used it when all else failed and I was getting no answers from physicians. All the laboratories participating with PrivateMD are LabCorp laboratories and there is no way for a patient to skew the results as the patient does not draw the labs, has no access to the samples or testing facilities where these tests are performed. Patients simply order and pay for the lab, take the order to the LabCorp facility near their home, hand the order to the lab assistant. Upon completion of the testing, the results are provided to the patient via an e-mail link.
This was how my journey with Lyme began -- at least where my knowledge regarding Lyme began. My original positive ELISA was then followed up by three other physicians with the same results. Two different labs came to the same conclusion as to positivity on the ELISA/IGM WB Lyme tests. Yes, I did agree to have the three additional tests because I wanted as much evidence as possible to either dispute or uphold this original ELISA. I was still trying to figure out what I felt about this Lyme controversy because I am a very evidence-based individual. I myself wanted as much information as I could get to either rule in or out this diagnosis. All four tests were performed at different times during a one-year period beginning in September of 2009, one year and a few months after symptoms first began. The three positive ELISA/IGM WB tests performed make me positive by CDC standards for acute Lyme disease, but the IDSA denies me the diagnosis based on the irrational conclusion that one must test positive on an IGG WB if the symptoms began more than six months before your first Lyme test. The logic they are using to define these tests is on the level of saying that the sun doesn't exist on a cloudy day because you can't see it. The additional positive tests, lent more credibility to the first positive ELISA and the further I educated myself on the Lyme controversy, the harder it was for me to believe that the IDSA works on an evidentiary basis when it comes to Lyme disease. Yes, it does make one wonder what else they are screwing up
The logic of the IDSA is not flawed, it's entirely disregarded when it comes to Lyme disease. It's important for any Lyme patient and for every doctor in this country to understand how these lab tests work. I believe one of the reasons the IDSA has been able to pull the wool over our eyes for so long is due to this lack of knowledge as to how these IGG/IGM tests really work in disease.
So along with the erythromelalgia, I went to the IDSA doc complaining of migrating arthritis pain, muscle pain, ringing in my ears, orthostatic hypotension like symptoms, acute GERD onset, acute appearance of multiple cherry angiomas, seizure-like episodes, muscle weakness, paresthesias, blah blah blah, and he tells me the tests are negative and "there are just some people who have illnesses we can't figure out." He ran no further viral or bacterial tests and I was out the door. It was approximately two weeks to a month later that I visited another doctor who ran those Lyme titers again and received the same positive result, but along with that she ran some viral titers.
I can't help but believe that the IDSA doctor was negligent in not ordering additional tests, regardless of his position on Lyme disease. Had he done this, he would have found that I had several viral titers that were very elevated and that, according to my mono titers, the continuous diagnosis of mono as to the cause of my symptoms wasn't making sense either. As an infectious disease doctor, had he ordered these viral titers, he might have seen lab results suggestive of a problem in my immune system, and as an infectious disease doctor it should be his job to investigate other possible infectious diseases that could be at the root of my symptoms, but he was more busy trying to be right than he was trying to be a doctor.
He believes LabCorp cannot be trusted. So now we have IDSA physicians self-appointing themselves to position of laboratory overseers. How about we have laboratory specialists come in and work as infectious disease specialists? Did you know that the CDC uses LabCorp? Maybe this IDSA doctor doesn't like that LabCorp is the second largest independent clinical laboratory company in the U.S. The key word may be "independent." He can't skew the results of an independent lab. A friend of mine who I met through this controversy was told the same thing from a female IDSA doctor in regards to her positive acute Lyme tests through LabCorp. She would not accept her LabCorp results either. My sister's IDSA physician in Virginia said her Quest test was also a false positive. Weird, because Quest is one of the labs my IDSA doctor likes.
If I had been smart, I would have left the doctor's office never to return. Instead I allowed him to retest through his lab of choice. My results were a positive ELISA through Quest and a positive 41kda band on my IgM -- but no band p23 (OspC) this time and failure to test the additional bands. When I phoned to ask for a copy of my results, I was simply told the test was negative. The copy I received from my IDSA doctor included only the results from Intermountain Central Laboratory which reported no ELISA and simply a negative response on the IgM. It wasn't until I picked up my medical records that I found I had tested positive on the Quest ELISA as well as positive on band 41 on the IgM. I believe they withheld this information for a reason. Of all the physicians I have seen in my life, he was one of the rudest and most creepy. On top of that, I feel he has no integrity. He had already told my general practitioner before he even saw me that he "didn't trust LabCorp." His mind was made up before I ever saw him. At the beginning of my appointment he made it clear to me he followed IDSA guidelines. Why I wasted the next 45 minutes with the guy I will never know. I did my best to educate him about the controversy. He wasn't even aware (or at least he said he wasn't) that the 2006 IDSA guideline panel members held patents to the bacteria and that there was an anti-trust investigation brought against the IDSA by Attorney General Blumenthal of Connecticut.
So here I was with a positive Quest ELISA as well as a positive band 41kda on the IgM, and he still made no further recommendations for what could be causing my ailment. Why didn't he test for other bacterial or viral infections? Who knows? Perhaps he already knew what it was and also knew he was going to do nothing about it.
In truth, the tests performed by the IDSA doc mean very little in light of the fact that his testing was performed two weeks after I had taken a medrol dose pack. Though I informed him of this fact, he simply stated it would not affect the tests. FALSE. Medrol affects the immune system. It's often used in auto-immune disease to inhibit the body's immune response so as to inhibit the body's friendly fire upon itself.
Since testing for Lyme disease relies on antibodies found in the blood and antibodies are part of the immune system, if you limit the immune system response, you are limiting the ability for the antibodies in Lyme to appear on the testing.
The Quest test was cross referenced with another lab at my request the same day. It was not until after I had the labs done through Intermountain Central Laboratory that I realized the IDSA doc had not ordered the ELISA with them. He had only ordered the IgM and IgG Western Blots, which goes against his own IDSA policies that I must have both a positive ELISA and Western blot to be considered positive. To add insult to injury, Quest does not perform testing on all the pertinent bands and Intermountain Central Laboratory will not give you the detailed band information which is very important in diagnosing Lyme. You simply get a positive or negative answer. I came out negative on those Western Blots. No surprise there since they were done two weeks after after this medrol dose pack when my immune system was inhibited. My LabCorp tests was performed the day before I took the Medrol dose pack. So who do you think I believe?
So as a Lyme patient, you are left in the cold to wonder which laboratories you can trust. Which doctors can you trust? This gives you a lot of faith in our government and our physicians, doesn't it? It becomes even more confusing when the CDC themselves use the IDSA guidelines as a link on their Lyme page as if the IDSA were the professionals in Lyme disease and then use LabCorp in so many of their operations there at the CDC. The two organizations don't even agree on which laboratories are useful, yet they agree with each other on who to exclude from the diagnosis. How can you not ask yourself what is going on here?
LabCorp does not include all the Borrelia specific bands, but they do show you which bands are positive. Intermountain Central Laboratory will not show which bands are reactive at all. You might have four reactive bands out of the five necessary on the IgG WB and all four of those bands could be specific to the Lyme bacteria Borrelia B., but you would still be considered negative. Why won't they tell you which bands are positive? It seems to me they want to control just how much information you actually know regarding your Lyme testing. But why? If you have a few bands on the test and the test is still negative, why would a lab be afraid to tell you exactly which bands reacted?
If you are positive at any of the bands that are specific for Lyme, you may find out that you have antibodies to the proteins made ONLY by Borrelia Burgdorferi. Your next question would then be, "How did I get antibodies to this protein if I have never been infected with this bacteria?" Good question. Lying is much cheaper for your insurance company. So they tell you it is negative if you don't have the five out of 10 required bands or if you test positive for acute Lyme disease and you have had the symptoms longer than six months, your told it is a false-positive Lyme test. And we go back again to, "why am I testing positive for a protein that comes specifically from Borrelia Burgdorferi if I have never been infected?"
Most patients will not request a copy of their Lyme labs because they aren't aware of the controversy. If you aren't an advocate for your own health, don't expect your doctor will be either. There are some great doctors out there, don't get me wrong. The problem is you really don't know which of those doctors graduated with a C- average and which doctors graduated in the top of their class. Disregard the GPA and you have the second half of a good doctor which is the ability to listen and empathize with patients. I'm sure empathy is not a key talking point in medical school, but it is from a patient standpoint. Be sure you understand the medicine because doctors come with degrees, not a breakdown of what qualifies them to treat you.
On to more banding information...when the LYMErix vaccine came out early on in the Lyme controversy, it caused the Western Blot of those vaccinated to light up like a Christmas tree. This wasn't supposed to happen. How would they know who had active Lyme infection and who was positive on the tests due to vaccination? How might one cover up a huge blooper like this? Well, you might start by removing from the tests, the two bands used in the vaccine -- OspA and OspB or Outer Surface Protein A and B which correspond to bands 31kda and 34kda. The Western Blot with these bands was now flawed in the cases of everyone who had received the vaccine. For those who never received the vaccine, these bands are still extremely important and should have never been removed from the lab tests.
What is OspA and OspB? Well, those are specific proteins put out by Borrelia Burgdorferi. They are sort of the fingerprint/DNA prints left in your blood stream after having been exposed/infected with the Lyme disease bacteria. It's sort of like bacteria pooping in your blood stream. Current Lyme tests look for evidence of this bacterial poop. They do not look for a live Lyme bacteria in your blood. Live bacteria are too difficult to find, otherwise this controversy would be moot. With current equipment and skills, the cost to run those tests would be even more outrageous. It's not cost-effective for our insurance companies who play poker with the IDSA. It is much easier to look for fingerprints. When you have the blood test done, blood is withdrawn and your blood is put into a petrie dish that is then mixed with an antigen. In Lyme the antigens are the proteins from the offending bacteria, Borrelia Burgdorferi. If your blood responds to this antigen, it is because your immune system has already created antibodies and you have been exposed/infected. Your blood will not have antibodies to a disease to which it hasn't been exposed.
So this leads to a further question. How can someone test false negative for Lyme disease? In order for your body to respond to an infection, the infection has to be active and the bacteria must be recognized by the immune system. Our immune systems customize a defense to each attack by creating a mirror image protein for each attacker. The mirror image can then fit perfectly onto the antigen and destroy it. Every time it sees that same enemy, it will attack and destroy. Immunizations are based on this process. You are immunized because your body can now remember that face and attack it immediately should it appear on your body's most wanted list. Unfortunately, this is also the cause for autoimmune diseases such as those cases that occurred with HLA-DR4. Keep reading, I"ll explain. Some bacterial proteins are so closely related to our own that the body ends up in friendly fire because it cannot differentiate between the body's proteins and the enemies proteins.
Enter Harry Potter. Unfortunately, Borrelia Burgdorferi is an intelligent bacteria. In order to evade the bounty put on it's head, Borrelia drops it's cell wall, puts on a mustache(cyst form), grows a beard (L-form), leaves it's comfortable home in your blood stream and moves to mexico(aka tissues and organs), plays hide-and-seek in your cells. In fact each time the body identifies the bacteria and makes that mirror image to fight it, Borrelia Burgdorferi gets cosmetic surgery. Each time BB gets cosmetic surgery, the body drops its defenses because it thinks the threat has disappeared. It can hide out in Mexico indefinitely. While it is hiding, you have no symptoms. If it decides to ambush, it is likely to wait for a time when your body's defenses are tied up, usually during another illness. One of its downfalls, reproduction. It has to leave its hiding place and return to your bloodstream to reproduce. This is when symptoms flare.
Antibiotics are most effective in killing bacteria during their replication cycle. Because the body has difficulty creating a mirror image each time BB changes its fingerprint, antibiotics are introduced to help it attack from all angles. This is why Lyme doctors use more than one antibiotic. It has to be surrounded by the S.W.A.T. team. The replication cycle of BB is about seven days. Streptococcus pyogenes, the bacteria which causes strep throat has a replication cycle of about eight hours. Since Strep will have to enter the blood stream often, a standard 10-day antibiotic treatment will cover 30 cycles of this bacteria's replication, killing it fairly quickly. This is why you should always finish your course of antibiotics just as the doctor ordered.
BB, however, is sophisticated. It has approximately 132 functioning genes. The syphillis spirochete which is well-known to hide in bodies for up to 20 years has just 22. There are five species of BB and over 100 strains in the U.S. There are over 300 worldwide. Current Lyme tests look for just one strain. Sites that BB can infect but are inaccesible to the immune system and antibiotics are the brain and central nervous system. Not surprising to me considering cancer cells also seek refuge in these same areas. This is also the reason why some persons seem to have mild symptoms at first and others, as in the case of Brook Landau, go to bed feeling healthy and wake up paralyzed.
So back to LymeRix and testing. Now that vaccinated individuals were showing positive for Lyme disease, it presented a problem for their so-called accurate tests. Not only were they not accurate enough to begin with due to the rogue nature of this bacteria, they had now gone and made them even less accurate with the vaccine they made! So, I suspect they started cleaning up the mess by removing bands 31 and 34 off the Western Blot, a huge disservice to the majority of the public who were never vaccinated and who will never have the opportunity to be tested for positivity at those bands unless they test through IgeneX or another laboratory which performs tests on ALL of the bands. They did, however, leave bands on the Lyme tests that were not specific to Lyme and could indeed cross-react with other bacteria and viruses, as in the case of band 41kda, the flagellin or tail of the bacteria.
When we speak of bands, we are referring to the fingerprints of Borrelia. Lyme tests should test for all of the possible Borrelia fingerprints, not just a chosen few. One should wonder why they would leave a non-specific band, (41kda) on the test in favor of two others which are Lyme specific. 41kda can cross react and thus be seen in other types of infections, but 31 and 34kda did not and they were removed. The approach they took allows for more false negatives and positives! This is one of the reasons I suggest you test through Igenex. Igenex includes those bands, OspA and OspB which have been removed by substandard Lyme tests. I tested positive on eight bands through Igenex, including 31 and 34 kda, OspA and OspB. The other problem with the vaccine was that OspA and OspB were so similar to a human gene called HLA-DR4 (an arthritis gene), that 1/3 of the vaccinated individuals suffered severe debilitating arthritis as their bodies now thought HLA-DR4 was the outer surface protein of Borrelia, hence the vaccine gave these people an autoimmune disease. Not everyone carries the HL-DR4 gene which is the reason only 1/3 of the group suffered these consequences. Glaxo-Smith-Kline settled out of court for $1 million. Shortly afterward, the FDA pulled the LYMErix vaccine citing, "not enough demand."
Does this mean if there had been enough demand, the FDA would have allowed them to continue vaccinating and cause more people to be stricken with autoimmune disease??? How negligent would that be? I suspect that DNA testing of individuals before vaccination would not have been profitable for anyone so the LYMErix vaccine went off the market so the FDA could cover their butts. I personally believe the FDA pulled it because of the problems which occurred with HLA-DR4.
So I rambled a lot, but I'll go back to the subject. They say they do not know the exact cause of erythromelalgia, but I know of at least one cause now and it is Lyme disease. View this video at ILADS.org of a woman named Nancy Brooks from Maryland who was diagnosed and treated for Lyme disease in 2008. She explains the exact same symptoms as being the first symptoms of her Lyme disease. She does not call it erythromelalgia but certainly it sounds like it is the exact same thing. She said she has had Lyme disease since 1996 when she was living in Oregon, so it was 12 years from start to diagnosis. Please view her video at this link:
I would say it's pretty important for anyone suffering from erythromelalgia to be tested for Lyme disease if your type is secondary and if you have other symptoms similar to Lyme disease. However, I believe your best chance at being tested and treated is through a Lyme Literate Medical Doctor (LLMD). In my opinion, the Infectious Diseases Society of America physicians in large part refuse to diagnose and treat Lyme based on evidence. There are a few good IDSA physicians who work with ILADS and other Lyme supportive groups, but they are few in number. Until the guidelines and financial conflicts of interest change to prove to us in the Lyme community that they have a better understanding of Lyme, I do not recommend seeking out an IDSA physician as the first line of treatment, but it never hurts to have another Lyme patient say, "I too was denied by the IDSA." Let's build a national case against them using their own behavior as evidence.
Without change from the IDSA, I would like to see the CDC split from the Infectious Diseases Society of America. Since when did the CDC have to stick with one organization's opinions as the ultimate rule in disease? I would like to see infectious disease physicians boycott their own organization and form a new organization that provides honesty and integrity in the making of guidelines that literally can kill and disable people permanently if done hastily and if done with any conflicts of interest that would bias their viewpoints.
The bias that the 2006 IDSA panel members had would never have been allowed in a court of law. In a court of law, the 2009 panel would have been forced to follow the rule of law instead of making up their own rules. No jury would ever be chosen in a case in the United States that consisted of the amount of conflicts of interest that these panel members had in creating these guidelines.
These very physicians are also testifying in court for insurance companies using guidelines based on evidence wherein 50% of that evidence was written by these IDSA panel members themselves. We are to believe the best evidence was based on documents these people were a part of while leaving out an entire worldwide body of evidence which directly contradicts what these IDSA physicians have stated. Why are these physicians allowed to testify in courts of law in Lyme disease cases when they have proven conflicts of interest about the very guidelines they are using to uphold their client's positions? This is not at all judicial! Previous Lyme cases that have been lost with the help of testimony from these IDSA's so-called "experts" in Lyme should be overturned! This is wrong!