Mom wrote on Jun 1, 2008 3:21 PM:Panel members claim they loose profit, however my daughter who remained ill after 2 weeks, underwent significant and painful cardiac tests, neurological and emg exams, orthopedic procedures, over 18 pills daily which damaged liver and affected her negatively.Her friend had 7 abdominal surgeries, and was scehduled for an Ileostomy.
Both girls when treated appropriately with long term antibiotics avoided further surgical procedures, livers and stomachs have healed. IDSA at OSHU told both girls, it is a coincidence . We know better.

Miki wrote on Jun 1, 2008 7:51 PM:“The Infectious Diseases Society (IDSA) denied any conflict of interest.” Huh???

The Connecticut Attorney General has much information showing the authors of the IDSA Lyme guidelines profiteering from Lyme tests, vaccines, payments from pharmaceutical companies, payments by ethically challenged insurers for “expert” testimony, etc. If they believe they are truly not guilty, why didn’t they bring this to trial to clear their reputation? Perhaps having all of these conflicts-of-interest brought to public view would be too embarrassing and question IDSA’s integrity.

An extract from the Attorney General’s report shows why HMO’s love IDSA…
“In a step that the British Medical Journal deemed “unusual,” the IDSA included in its Lyme guidelines a statement calling them “voluntary” with “the ultimate determination of their application to be made by the physician in light of each patient’s individual circumstances.” In fact, United Healthcare, Health Net, Blue Cross of California, Kaiser Foundation Health Plan and other insurers have used the guidelines as justification to deny reimbursement for long-term antibiotic treatment.”

What isn’t mentioned is that HMO’s also use the guidelines to deny a diagnosis. This is particularly so on the West Coast since the recommended screening ELISA screening test is based on one East Coast reference strain. West Coast strains are likely to be unresponsive to this test, which is unreliable under the best of conditions.

E.R. wrote on Jun 3, 2008 9:15 AM:This article is just another example of how the same bias that affected the guidelines has infected the media. It's just another article pitting a doctor on the tainted guidelines panel or in their immediate sphere of influence against a patient or a patient advocate, instead of another doctor who actually treats Lyme disease. And another chance to regurgitate blatantly false information promulgated by the IDSA panel, that there is no evidence, blah, blah, blah.

The truth is, there is COPIOUS scientific evidence that late-stage Lyme disease persists despite nominal treatment, and that repeated, long-term treatment can be necessary and beneficial in those cases. There is NO evidence, NONE, that 4 weeks of antibiotics cures all stages of Lyme disease; the IDSA pronouncement flies in the face of treatment experience with all similar diseases like syphilis, too.

The IDSA panel that formulated the Lyme guidelines has been well-known for their a priori views on Lyme and conflicts of interest for a long time, finally it was investigated. I am only sorry that these panelists are ruining the reputation of the majority of doctors in the IDSA - most of whom know little about Lyme disease themselves, but take their cues from these guidelines - and disappointed that the central office of the society chooses to blindly back the tainted panel and their views rather than look at the overwhelming scientific evidence that they are wrong.

Dr. Willy Burgdorfer, who discovered the bacterium that causes Lyme disease (and after whom the microbe is named, borellia burgdorferei), and who has been honored with, among many other awards, IDSA's prestigious Bristol Award, has said in a recent article that, "Treatment of Lyme disease remains problematic. Early Lyme is treatable with antibiotics, whereas late stages require intravenous treatment and long-term applications."

It's not hard to find doctors with the same opinion, it is shared by the vast majority of doctors who actually spend their time treating patients with this disease. I'd like to challenge reporters to dig for the truth and attempt a little balance for once.

Craig wrote on Jun 3, 2008 5:14 PM:The IDSA guidelines are based on inaqeduate studies. Empirical and evidence based medicine has shown that many factors are likely involved with the chronic form of Lyme Disease. Thus, treatments cannot be standardized and must be tailored for the patient. This kind of customized treatment and the multivariate nature of this illness does not lend itself to study very well. The lack of studies showing long-term antibiotic efficacy does not prove that antibiotics do not work. It does prove, however, that there is a lack of good studies. The IDSA cannot keep it's head in the sand much longer. The epidemic is growing and someday their family members or loved one's will be effected. Then the lightbulb will go on. Until then....

Maritza wrote on Jun 6, 2008 11:50 AM:I think it is important to note that Lyme disease is prevalent in CA as well. This is not just a east coast problem. The Dept of Health lists all but 2 counties in CA have ticks infected with lyme.
My daughter was mis-diagnosed for 10 months because doctors here in San Diego said that there is "no lyme disease" in CA.
If these same doctors had been kept up to date with all the evidence to the contrary that is easily available on the CA Dept of Health website, then she would not have lost the last two years of her life.
Besides the pathetic IDSA guidelines that limit treatment, the hardest issue from virtually everyone I talk to is getting a Correct Diagnosis in a timely manner.

Lyme Lifer wrote on Jun 12, 2008 10:51 AM:We need to get over the mentality that we are OK if Lyme disease isn't prevalent in any given area. We travel. Ticks travel, thanks to us.

Understand this please: If you don't have Lyme disease today, you or a loved one could easily get it walking down the street tomorrow. Or you could get it via a blood transfusion, via the plancenta, or via sexual contact. The ticks, according to entomologists, are world-wide. Not just in New England and a few other, limited hot spots. Think hard about whether you'll be happy with the wrong treatment. Or no treatment at all, like people with insurance companies eager to avoid helping their policy holders.

We also need to get real about what the IDSA concludes. "Lyme disease" in not one infection -- it is a brew of many strains as well as co-infections, each one of them having multiple strains also. (For example, European ticks carry different kinds of babesia than U.S. ticks do.) And the co-infections are not all bacterial. Doctors thus must be Lyme-literate enough to work out treatment that will address the very individual mix of infections each patient presents, given the hundreds of permutations that the various strains of diseases can present.

As a Lyme victim myself, I have met lots of folks with Lyme disease. I have yet to meet any Lyme patient who believes that IDSA's treatment protocol helped them -- indeed, many of them realize that it terribly harmed them. The IDSA protocol ignores studies, it overlooks the complexities of co-infections, and the fact that co-infections that are bacterial don't all respond to the same antibiotics that kills borreliosis.

I have Lyme disease that has left me with neurological damage because no one understood what was wrong with me and no one was willing to figure it out. I was given the label "neurotic" instead. I first picked up tick disease in the Great Lakes area, got more from bites in Africa, more on the West Coast U.S., and possibly more in South America. Never once got the bull's eye rash. Believe me, a "few weeks" of antibiotics would do nothing but drive the spirochete deep into my brain and joints. And would allow the non-bacterial tick infections to progress unabated.

Amy wrote on Jun 12, 2008 4:32 PM:I have neuroborreliosis, aka Lyme Disease. Originally I was told it was MS.

Per this story, the IDSA says, "...the panel members denied themselves and their colleagues an opportunity to generate a significant amount of revenue when they recommended against expensive, repeated, long-term antibiotic therapy." Who are they kidding? Which provides a bigger profit margin, MS meds every day for the rest of my life or antibiotics until my symptoms resolve? Hmmm. It doesn't take a rocket scientist to see right through that one.

Honestly, study how much a MS patient spends a month on pharmaceuticals, labs, physical therapy, doctor's visits, etc. and then compare it to the medical costs of a Lyme patient for a month. If treated properly(long as needed-6 mos-5 years) there is roughly a 96% chance a Lyme patient will become symptom free. Very few, approx. 3%, have to take antibiotics for the rest of their life. MS meds are for the rest of your life, 100% of the time.

Sorry, but I can't believe how ridiculous this whole mess has become. These are supposed to be the brains that can heal and ALL they are, are the heels that care more about their bread and butter than the suffering of thousands of people.