posted 12 July 2005 16:26               

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 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

posted 12 July 2005 18:58               

This is a parallel in writing...making ti both scientific and personal at its approach.

Very good read.

trout

posted 13 July 2005 00:52               

Send it anyway. Even though they've decided not to pursue the article. It's a good educational opportunity for the reporter. Well stated!

posted 13 July 2005 00:55               

Can you rewrite the letter to reflect that the original article was cancelled.

I think we should keep this somewhere that the newbies can find it.

Carol

p.s. I see that you registered July 12.
Perhaps you are someone who's been here a while?

posted 14 July 2005 08:02               

I'll rewrite it to be more general maybe and then send it to some congresspeople or something.

and yes Carol, I've been lurking for a while - I was just a little shy.

posted 14 July 2005 14:55            

I agree that it should be edited at the beginning about them NOT doing this article after all.

I'll copy this web page and paste it to Treepatrol's newbie links asking him to post it somewhere. We all know how good he is about doing this & promptly!
========================================

Welcome to this 24/7 educational & support group board!

Here's TREEPATROL's and TINCUP’S combination newbie links.
http://flash.lymenet.org/ubb/Forum1/HTML/029917.html

Print off the links then check them off as you read as you could spend several months reading all of this. Treepatrol constantly adds new links as they become available from the members here.

print & read Dr. Barrascono's info first; you will come back to this often.

Also, see Cheryl’s extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful!
http://www.lymeinfo.net/lymediseasetreatment.html

Some guidelines from Betty/others on using this message board:

• Do NOT use all caps when posting; it’s hard on our eyes. But I know one of our members has macular degeneration, and all caps is what she can see & read so exceptions like this are acceptable for good reasons.

• We chronic, late-stage lymies can NOT read long paragraphs. So please limit your paragraphs to 6-8 lines max of text and double space between paragraphs.

• You can EDIT your text comments anytime. You can NOT edit your subject line so please make it as specific as possible instead of “help, question” etc. in order to have more readers/replies in trying to assist you. There are between 30-40 NEW/replies to post daily so we can’t read all the posts on our limited time here...thanks for understanding.

• If you use the “quote” icon, please DELETE [B] bold at the beginning & ending of the quote. This makes it easier on our chronic, late-stage lyme eyes.

posted 21 July 2005 13:18               

quote:

---

Originally posted by BorreliaBrain:
comments? editing suggestions? too long? likely to backfire? inaccurate? typos anyone?

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 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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