To Whom It May Concern,

I've been told that the NY Times is planning to do a piece on Igenex Lab's testing for Lyme disease. I was also led to believe that your article would take a negative slant on the lab (although how the word would get out ahead of time that a proposed article would take a particular slant I don't know, so forgive me if this presumption is incorrect).

I am a research biochemist who happens to suffer from Lyme disease. I just wanted to drop you a note and express my opinion on the matter, for what its worth.

I was sick for a long time with something that doctors could not seem to diagnose accurately or treat effectively. I received many tentative diagnoses (fibromyalgia, chronic fatigue, etc.) and many basically unhelpful treatments. Eventually, I was tested for Lyme at Igenex. My blood test was positive via Western Blot testing (but NOT Elisa, interestingly), both by lab standards and by the needlessly restrictive standards of the CDC. Treatment for Lyme is making me feel much better. Thus finding myself thrown into the middle of the Lyme Wars, I've studied up a little on this disease.

The current take on Lyme disease by many physicians is that it is easy to diagnose (a positive Elisa backed up by a positive Western Blot through Quest or some other mega-lab, a rash, and some sore joints), and easy to treat, (a few weeks of antibiotics).

As far as I can see after a review of the literature, this "take" on Lyme disease is not supported by the current science in the slightest. Although there is nowhere near enough research being done on tick-borne diseases, the research that is being done keeps giving the same answer: that Lyme disease is very serious, very widespread, and very difficult to accurately diagnose and adequately treat. (For instance, if three weeks of antibiotics were really sufficient to treat late-stage Lyme, why is Wyeth Sexton expected to miss the coming football season altogether?)

Study after study shows that Borrelia burgdorferi, the spirochetal bacterium currently believed to be the causative agent of Lyme disease, can be cultured out of both animals and humans who have been given long courses of antibiotics and who are still symptomatic. In light of these findings, claims of the existence of a "post-Lyme syndrome" or mysterious autoimmune condition precipitated by Lyme begin to sound almost laughable.

Study after study also highlights the basic difficulty of testing for Lyme based on the immunological response of the patient. Immune response against these bacteria seem to wax and wane in patients, which is understandable considering that research is showing this bug to be an absolute expert at avoiding immune surveillance, and can vary its antigens considerably. Many studies depict cases of seronegative, symptomatic patients who are later shown to be positive for Borrelia bergdorferi via direct culture. I am not aware of any study on a Western Blot seropositive patient who was later shown not to be infected with Borrelia burgdorferi.

It is a common misconception that Lyme Western Blots, whether done by Igenex or any other lab, are prone to false positives. This is incorrect and not supported by research. False negatives are very common on immunological tests for Lyme, while false positives are probably very rare.

And from what I have read, it seems that Igenex performs its Western Blots more carefully, probing for more antibodies against more kinds of very specific bacterial coat proteins, using more bacterial strains than other labs. I do not think that another species of bacteria that would "cross react" on the Igenex Western, because most of the antibodies they test for are very very specific to Borrelia bergdorferi proteins.

So it is not surprising that Igenex returns more positive results than other labs. In the case of Lyme disease, this is a good thing. Further, Nick Harris is an excellent scientist by all accounts, and I have been impressed by his grasp of the subtleties of Lyme testing.

It is indeed possible to test negative on a Lyme Elisa test and then test fully positive on a Western Blot. To deem that someone who does so probably doesn't have Lyme disease because the CDC surveillance criteria requires testing positive on both, given what we know about immune response to this pathogen, is sorta dumb.

In fact, after becoming familiar with current Lyme research, I cannot understand why there is even a debate at this point about false negative testing, high rates of occurrence, persistence and severity of this disease. It is unwarranted in my opinion. And it is a tragedy for truly sick patients who need medicine and competent care, not needless and perhaps politically motivated controversy. I predict, as further research is done, it will be more and more embarrassing to try to insist upon the standard view on Lyme in light of the quickly emerging facts about this disease.

In closing, I'd like to remind people bent on staying in the mainstream that Dr. Semmelweis was laughed out of the business for suggesting that physicians wash their hands before treating patients. Sometimes, with relatively new diseases, we make mistakes.

All I know for sure is that I was sick for a long time, got a positive Western from Igenex, got treatment, and am now starting to feel A LOT better. Don't let the NY Times be caught on the wrong side of this debate.

Sincerely,

Anonymous Lyme-Bedeviled Scientist

I like the information and the tenor...

Well done...

A first time poster?? Welcome!!!Wow...where have you been??? It shows you've been doing your homework somewhere...I hope you stick around and share more with us!!!

I'd also explain the comment about the CDC criteria being needlessly restrictive. A major point to make is that labs should report ALL bands so that doctors can consider bands that are known to be unique and specific for Bb whether or not enough bands are present simultaneously to qualify as a "positive" according to the Dearborn standard.

That way you avoid the whole notion that you know the story angle and that whole thing where you apologize for being presumtious perhaps erroneously. However it preserves the substance of your post which I think is good.

References might be helpful too and add further credibility to your well reasoned and reasonable sounding letter.

I still think it would be better to take a thread filled with such posts and for the lda or ldf or ilads or Igenex themselves (last choice igenex themselves) or someone who has been contacted about the story, to forward the thread to the reporter insted of having people write to the reporter.

All in all one of the three best letters I've seen written though.

That's my opinion, I'll send you the bill!

quote:

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Originally posted by BorreliaBrain:
Is this ok? Or is it likely to backfire? Too long maybe? Anyone editing suggestions?

To Whom It May Concern,

I've been told that the NY Times is planning to do a piece on Igenex Lab's testing for Lyme disease. I was also led to believe that your article would take a negative slant on the lab (although how the word would get out ahead of time that a proposed article would take a particular slant I don't know, so forgive me if this presumption is incorrect).

I am a research biochemist who happens to suffer from Lyme disease. I just wanted to drop you a note and express my opinion on the matter, for what its worth.

I was sick for a long time with something that doctors could not seem to diagnose accurately or treat effectively. I received many tentative diagnoses (fibromyalgia, chronic fatigue, etc.) and many basically unhelpful treatments. Eventually, I was tested for Lyme at Igenex. My blood test was positive via Western Blot testing (but NOT Elisa, interestingly), both by lab standards and by the needlessly restrictive standards of the CDC. Treatment for Lyme is making me feel much better. Thus finding myself thrown into the middle of the Lyme Wars, I've studied up a little on this disease.

The current take on Lyme disease by many physicians is that it is easy to diagnose (a positive Elisa backed up by a positive Western Blot through Quest or some other mega-lab, a rash, and some sore joints), and easy to treat, (a few weeks of antibiotics).

As far as I can see after a review of the literature, this "take" on Lyme disease is not supported by the current science in the slightest. Although there is nowhere near enough research being done on tick-borne diseases, the research that is being done keeps giving the same answer: that Lyme disease is very serious, very widespread, and very difficult to accurately diagnose and adequately treat. (For instance, if three weeks of antibiotics were really sufficient to treat late-stage Lyme, why is Wyeth Sexton expected to miss the coming football season altogether?)

Study after study shows that Borrelia burgdorferi, the spirochetal bacterium currently believed to be the causative agent of Lyme disease, can be cultured out of both animals and humans who have been given long courses of antibiotics and who are still symptomatic. In light of these findings, claims of the existence of a "post-Lyme syndrome" or mysterious autoimmune condition precipitated by Lyme begin to sound almost laughable.

Study after study also highlights the basic difficulty of testing for Lyme based on the immunological response of the patient. Immune response against these bacteria seem to wax and wane in patients, which is understandable considering that research is showing this bug to be an absolute expert at avoiding immune surveillance, and can vary its antigens considerably. Many studies depict cases of seronegative, symptomatic patients who are later shown to be positive for Borrelia bergdorferi via direct culture. I am not aware of any study on a Western Blot seropositive patient who was later shown not to be infected with Borrelia burgdorferi.

It is a common misconception that Lyme Western Blots, whether done by Igenex or any other lab, are prone to false positives. This is incorrect and not supported by research. False negatives are very common on immunological tests for Lyme, while false positives are probably very rare.

And from what I have read, it seems that Igenex performs its Western Blots more carefully, probing for more antibodies against more kinds of very specific bacterial coat proteins, using more bacterial strains than other labs. I do not think that another species of bacteria that would "cross react" on the Igenex Western, because most of the antibodies they test for are very very specific to Borrelia bergdorferi proteins.

So it is not surprising that Igenex returns more positive results than other labs. In the case of Lyme disease, this is a good thing. Further, Nick Harris is an excellent scientist by all accounts, and I have been impressed by his grasp of the subtleties of Lyme testing.

It is indeed possible to test negative on a Lyme Elisa test and then test fully positive on a Western Blot. To deem that someone who does so probably doesn't have Lyme disease because the CDC surveillance criteria requires testing positive on both, given what we know about immune response to this pathogen, is sorta dumb.

In fact, after becoming familiar with current Lyme research, I cannot understand why there is even a debate at this point about false negative testing, high rates of occurrence, persistence and severity of this disease. It is unwarranted in my opinion. And it is a tragedy for truly sick patients who need medicine and competent care, not needless and perhaps politically motivated controversy. I predict, as further research is done, it will be more and more embarrassing to try to insist upon the standard view on Lyme in light of the quickly emerging facts about this disease.

In closing, I'd like to remind people bent on staying in the mainstream that Dr. Semmelweis was laughed out of the business for suggesting that physicians wash their hands before treating patients. Sometimes, with relatively new diseases, we make mistakes.

All I know for sure is that I was sick for a long time, got a positive Western from Igenex, got treatment, and am now starting to feel A LOT better. Don't let the NY Times be caught on the wrong side of this debate.

Sincerely,

Anonymous Lyme-Bedeviled Scientist

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Believe, I have taken your suggestion and omitted the first paragraph...

I would like to explain about the CDC standards being too restrictive, but I don't want the letter to get any longer! In fact, I'd like to shorten it if possible... also, I thought of referencing it - but I think that is too much in a letter - everything I say is readily verifiable.

Any suggestions about how to make the CDC statement without making this longer? Anything else I could take out maybe?

Thanks! I'll be expecting the bill in the mail : )

I think your letter is just great as it is. Well written, clear, and informative. Hang onto it, because you may want to use parts of it again!

BTW, did you see the post with the letter from Nick Harris, of Igenex. Looks like the NY Times pulled the story, with some help from the letters we all wrote!
YOU DID IT! NY Times KILLED their article!!!

Letter writing works!! BB, thanks for writing such a good one. The only reason I would edit it, is to make it usable in another situation.