IDSA vs ILADS – why there is a chronic Lyme conflict

We are very happy for this guest posting by Lisa Hilton, USA!

While you’re reading this fascinating background to the chronic Lyme conflict, we want you to ponder some questions and answer to them in the comments if you have any thoughts:

How come IDSA is still trusted after these reveals (see below)? 

Why does the CDC use the IDSA guidelines? 

Why does the rest of the world follow the IDSA guidelines?

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The Two Lyme Camps

First there is the IDSA side. The IDSA, (Infectious Disease Society of America) states that it is easy to diagnose, simple to treat, and easy to recover from. They recommend anything from two pills of doxycycline to take care of a lyme infection to three weeks of oral doxycycline.Note: While IDSA is a private professional organization, it has government preference over the other nonprofit organization, ILADS. The CDC’s website links to IDSA’s guidelines instead of ILADS’ guidelines.Since the CDC subscribes to the IDSA’s guidelines, doctors fear medical board investigations and censure if they treat outside of those guidelines. This limits the doctors as to how they can treat us. It takes away their being able to make their own judgement calls. For example, if their patient takes all three weeks of doxycycline, and is still showing symptoms, the doctor can be under scrutiny from the medical board if they should decide to give them another prescription. The insurance company will want to know why the doctor is prescribing more meds and they will refuse to pay anymore of the patients bills stating that they have already taken the full treatment and should be cured now according to the IDSA guidelines.Consider this: *The IDSA’s guidelines state: ”Clinical findings are sufficient for the diagnosis of erythema migrans, but clinical findings alone are not sufficient” to diagnosis other signs of Lyme. Patients without an EM rash (bull’s eye rash) must have 2 positive Lyme tests ”using the 2-tier testing algorithm recommended by the CDC.”

Then consider this:
*CDC’s surveillance definition, which states: ”This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis.”

Further consider

* The CDC reports that only 68% of Lyme patients meeting its surveillance definition have EM rashes.

* Its two-tier test requires positive ELISA and western blot tests for a diagnosis. The CDC relied on studies showing that this two-tier approach had sensitivities of 33% and 57% for early-and late-stage Lyme respectively. This leaves 22% of patients untreated with early-stage Lyme and 43% untreated of late-stage Lyme, since standard EM rashes disappear in early-stage Lyme.

* The IDSA guidelines recommend only up to 28 days of antibiotics, even for late-stage neurological Lyme. They say: ”There is no convincing biologic evidence for the existence of symptomatic chronic B. burgdorferi infection among patients after receipt of recommended treatment. Antibiotic therapy has not proven to be useful and is not recommended for patients with chronic Lyme for more then 6 months with subjective symptoms after administration of recommended 10-to 28-day treatment.

Yet, the same IDSA panelists said elsewhere that Lyme’s successful yield rate for blood cultures is below 10%. So why do the IDSA guidelines call these cultures the ”gold standard?”

* The guidelines rejected a study that used a new method to culture the bacterium in 97% of 47 guideline-treated patients because the germ was found with microscopes, not DNA tests, and because two other studies with 22 guideline-treated patients couldn’t culture it.

* The IDSA’s guidelines will not say ”Chronic Lyme,” instead they state that chronically ill patients suffer from post-Lyme syndrome. This is defined as ”unexplained chronic subjective symptoms following treatment with recommended antibiotic regimens.” It is their way of denying persistant infection and making it seem there is another reason for ongoing symptoms.

In 2006, an antitrust investigation was initiated by Connecticut Attorney General Richard Blumenthal. Here are some of the reasons for the investigation.

1. Lyme Guidelines suggest relying upon inaccurate testing to diagnoses Lyme. Many doctors believe that they should diagnose Lyme based clinically (based upon symptoms).

2. The IDSA says its guidelines are voluntary, but the truth is, major insurers use them to deny coverage for long-term antibiotic treatment, limiting patients in getting the appropriate long term treatment they need. We are in an insurance-dominated environment, and insurance companies and hospitals use economic profiling to pressure their doctors to conform to cost parameters and restrictive guidelines when providing treatment.

The Conclusion of the Antitrust Investigation:

In May 2008, Blumenthal concluded the investigation and announced the flaws he discovered in the Lyme Disease guidelines’ development.

1. The investigation revealed panelists’ connections to insurance and vaccine companies in violation of antitrust principles, failure to review potential conflicts of interest such as financial interests in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies. He found there was bias in the selection committee, and exclusion of dissenting panelists.

2. The attorney found misrepresentation of the guideline authors’ views as independent, and misrepresentation of the guidelines as voluntary. There were what they called ”improper links” between the IDSA’s and the American Academy of Neurology’s (AAN) Lyme panels. The two panels shared key members, and were working on both sets of guidelines at the same time, which is a violation of IDSA’s conflicts of interest policy. When the IDSA learned of the improper links, it aggressively sought AAN’s endorsement.” The investigation showed that their guidelines used ”strikingly similar language” to conclude that chronic Lyme didn’t exist and defined symptoms persisting after treatment as ”Post-Lyme Syndrome” also in the same way as the IDSA. Then the IDSA portrayed the AAN’s guidelines as independent corroboration and tried using them to defeat legislation supporting long-term Lyme treatment.

3. Failure to significantly evaluate contradictory evidence. Doctors were pressured to conform to the beliefs that Lyme was not chronic.

The guidelines reported conflicts of interests for five IDSA panelists:

1. Dr. Gary Wormser, the panel chair, received funds ”from Baxter and Immunetics, and is one of the founders of Diaspex. Eventually discovered also was that Wormser disclosed he was receiving grants related to Lyme disease from Bio-Rad, Biopeptides, Merck and AstraZeneca, owning equity in Abbott, and being retained in some medical-malpractice cases involving Lyme disease.”

2. R. J. Dattwyler, is a speaker for Pfizer and a part owner of Biopeptides. Later is was discovered that Dattwyler disclosed he had a financial connection to Baxter and serving as an expert witness in medical malpractice actions

3. J. J. Halperin, an expert witness on behalf of Lymerix (GlaxoSmithKline) the failed Lyme vaccine.

4. Allen C. Steere is a consultant for Baxter and P. J. Krause. This is a developer of a diagnostic procedure for a coinfection of Lyme. Later disclosed was that Steere has a financial connection to GlaxoSmithKline and Viramed.

5. Dattwyler elsewhere disclosed a financial connection to Baxter and serving as an expert witness in medical malpractice actions, and Steere disclosed a financial connection to GlaxoSmithKline and Viramed. (51) A sixth panelist, Eugene Shapiro, elsewhere admitted to receiving grants for Lyme vaccines, testifying in Lyme-related medical malpractice actions, and reviewing Lyme disability claims for Metropolitan Life Insurance Company.

Later discovered also was that another panelist, Eugene Shapiro, admitted to receiving grants for Lyme vaccines, testifying in Lyme-related medical malpractice actions, and reviewing Lyme disability claims for Metropolitan Life Insurance Company.

And this is the panel we rely on to help us who are suffering with Lyme get the care we need?

Final Outcome

The attorney general’s antitrust action resulted in a settlement, which required that the guidelines be reviewed by a completely new panel that is free of conflicts of interest and represents a range of views.

New Issues

Many Lyme patients were not happy with the resulting review panel because its chair was a former IDSA president. The new panel elected totally excluded any candidates who supported long-term treatment. Lyme advocates felt like the new panel just ended up being ”more of the same.” The final blow came when the new review panel’s final report decided that even though they thought the guidelines should be updated to give doctors discretion in diagnosing patients who have a high probability of Lyme but only equivocal tests, but that antibiotics are still not recommended to treat patients beyond a short 28-day treatment. Still no long term treatment was thought to be necessary.

The attorney general also found that the IDSA failed to follow its own procedures for appointing panelists. The IDSA’s procedures say that guideline panels should have a wide range of experts, therefor hearing all sides of different views. They also are strongly encouraged to include members of relevant professional societies and to work toward consensus. But the attorney general found that the 2006 Lyme panel’s chairman had handpicked a like-minded panel without the IDSA oversight committee’s approval. When a dissenting member of IDSA’s 2000 Lyme guidelines panel had different opinions and argued that chronic Lyme exists, the panel pressured him to conform, and removed him when he refused. When scientists with differing views on chronic Lyme sought to join the 2006 panel, IDSA told them that it was fully staffed, although later they hired more like minded panelists.

Again, like the 2000 panel, the 2006 Lyme panel was clearly biased. They then proceeded to write the guidelines in a flawed manner. Here is the attorneys’ findings.

* The IDSA left out any research that didn’t fit into their definition of Lyme and refused to even consider information regarding the existence of Chronic Lyme.

ILADS

International Lyme And Associated Diseases Society

Their description from ILADSILADS is a nonprofit, international, multidisciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS promotes understanding of Lyme and its associated diseases through research and education and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases.The ILADS guidelines are what most Lyme doctors go by. They promote long term treatment, and diagnosis which can be based on clinical diagnosis.Which, doesn’t this make sense? If you were being treated for strep throat and at the end of your antibiotic treatment you found you still had a sore throat, would your doctor not prolong your prescription of anitobiotics? Would he not try a new one? Would he tell you it’s cured, or it’s all in your head and you are not really sick?ILADS has a list of research that backs up their claims that Lyme Disease is a chronic condition caused by a persistant infection. To See Research Click Here.

Links I used for this info:

http://www.ilads.org/lyme_research/lyme_articles4.html

http://cid.oxfordjournals.org/content/51/1/1.full

http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284