Review Panel Leaves Controversial Lyme Disease Guidelines Unchanged

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The scientific evidence for Chronic Lyme disease and the PERSISTENCE of the COMPLEX Borrelia Spirochete is DETAILED and VAST. Please see http://www.lymeinfo.net/medical/LDPersist.pdf for 70 studies which show the persistence of the bacteria. You may like to look at a study titled "Rapidly progressive frontal-type dementia associated with Lyme disease" which demonstrates a tragic case of a gentleman diagnosed with Dementia after being treated with a course of antibiotics for Lyme Disease. He showed improvement whilst on antibiotics but relapsed when the antibiotics were stopped. He was institutionalised for the psychiatric condition but soon died. The authors of this study concluded that "Lyme disease must be considered even in cases with purely psychiatric presentation, and prolonged antibiotic therapy may be necessary"
Various organisations are often cited to substantiate the IDSA guidelines (namely the CDC, EUCALB and ALDF - yes, the very same ALDF mentioned in this article) when those very organisations actually hold no independent viewpoint at all but merely voice and duplicate that of the IDSA Lyme disease panel. Different organisations are being cited to give the appearance of wider and more authoritative backing from different, independent sources when the membership of these organisations actually contains the very same people amongst their number and, therefore, disqualify them as an independent source.
There is no corroborating evidence from varying authoritative points of reference, then, to support this view promulgated by IDSA; there is, in fact, only one point of reference – the guidelines as set out by the IDSA Lyme disease panel!

Enlightened80 11:51AM May 12, 2010

What a surprise. The IDSA reviewed their own guidelines and they think they're just fine. As they have done in the past, they once again rely on 'only' their own old studies and excluded any doctors who actually treat patients from being on the review panel. Did anyone expect that they would admit that under their watch, they and the CDC have allowed this once rare disease to reach the status, by the CDC's own criterion and admission, an EPIDEMIC. The same CDC also admits that since the current tests are so unreliable and LD is so commonly misdiagnosed as a horde of other illnesses their own 'reporting' of Lyme underestimates the numbers by ten-fold.
The IDSA is only one of many infectious disease associations and the majority of other actual 'Medical Associations who've studied Lyme Disease' vehemently disagree with the IDSA's conclusions.
This is a patient advocacy issue as well, and the brainwashed mainstream medical community is ignoring an actual certified epidemic. Unfortunately, the IDSA is in a position of power, and under the influence of ego, conflicting interests and blind loyalty to the one flawed study repeatedly referred to by the IDSA camp , they refuse to admit that people like myself can and have benefited from antibiotic treatments beyond the 'guidelines' recommended short treatment.
Under these guidelines, patients are denied even the same oral antibiotics given for years to people suffering from bad acne. They exaggerate the overuse and risk of 'long term' 'dangerous' IV antibiotics. There are risks involved in many medical procedures (chemotherapy comes to mind) and 'some doctors' are trained to carefully administer medicine. Other doctors, turn a blind eye, and ignore evidence contrary to the IDSA for fear of medical board sanctions and insurance companies dropping the coverage for their practices.
I have Lyme disease (positive test, bull's eye rash, engorged tick and a multitude of classic Lyme symptoms) I've suffered for nearly a decade. Due to the severity and multitude of symptoms, I've been admitted in three different hospitals. Lyme disease's role in my illnesses was dismissed everywhere I went. In each case, although, I remained symptomatic, I was denied any treatment whatsoever beyond a day, a week, or 30 days (depending on the hospital).
After years of dismissal and lack of treatment by IDSA influenced doctors, I eventually found a doctor who's been treating Lyme successfully for 20 years, and after a year of carefully monitored treatment, I'm beginning to feel 'well' again. I am not 'cured', but thanks to medical treatment 'beyond' the IDSA guidelines, I have resumed a mostly normal life.
I've seen the same dismissive run around and lack of treatment with too many others (hundreds by now) to think I'm a rare case.
The IDSA is wrong. How many more must suffer before the medical community realizes 'the emperor has no clothes"?

Paul of MA 8:33PM April 28, 2010

The really sad thing is that the IDSA guidelines are used in Europe too. My infectious disease specialist in Ireland says I don't have Lyme due to a negative Elisa despite having 2 separate German labs. and a UK hospital all saying I do have Lyme. My ID consultant says negative Elisa = no Lyme. She says there is not such thing is cyst formations in Lyme. She says that more than 3 months treatment is considered dangerous. I accused her of following IDSA guideliness and she said, no she is not. She then quoted IDSA in her letter to my GP. This is happening regularly both in Ireland and the UK and pretty much Europe wide. My history of tick bites and German lab. results were ignored and yet I was told I had chronic fatigue syndrome which can not be confirmed by lab tests. How can they be so sure of that? It is about time that doctors realise that the IDSA have very blinkered vision and they are not best served to advise on anything to do with Lyme disease at all.

Tick Talk Ireland 11:15AM April 27, 2010

Clearly the Lyme Community will find it's way thru the hell of treatment. The IDSA has lost it's ability to hear from professionals treating this disease. Imagine a Cancer doctor being told their opinion doesn't matter in treating cancer?
I woke completely paralyzed and unable to speak 4 years ago. This after a lifetime of being told I had Fibromyalgia and arthritis. Every hospital in Boston sent me away in this condition. Can you imagine being in a body that doesnt move or speak? I am only 1 of over 250,000 now being affected yearly in this country. Time to get some science behind treatment guidelines because it's been proven the Lyme guidelines written in 2006 and now being upheld don't have any. Nothing to prove 3 weeks of abx works to kill Lyme. NONE!
Children and families are being affected and dying of Lyme and co-infections associated with Tick Borne Disease. Our IDSA has chosen not to listen to the doctors who are testing and treating this disease. It's a sad message to our world.

Trish McCleary of MA 2:28PM April 26, 2010

Is it the IDSA or CDC? Is IDSA a contractor to CDC? Where does IDSA's monies come from? We were checking out the IDSA web site to find out....we should follow the money to see who is really in control. It obviously doesn't have much to do with data, science or patients.

Maryland Mom of MD 9:55AM April 25, 2010

So you report Baker stating below there had been no comment and completly left out that
Atty General Blumenthal DID respond..how convient...He was not at all mis-guided by thousands of suffering human beings" Who the heck does Whitley think he is in making such a sick comment.- See Below Atty Generals comments posted yesterday - do your homework. This very obviously needs to be investigated further
"Baker noted that so far there has been no comment from Attorney General Blumenthal on the panel's decision.
"I think the attorney general was misguided by the [Lyme disease] activists," Whitley said. "I do not think his contention against the Infectious Diseases Society was either justified or warranted," he added."
Connecticut Attorney General's Office
Press Release
Attorney General Statement On IDSA Guidelines Review Panel Report
April 22, 2010
“My office is reviewing the IDSA’s reassessment of its 2006 Lyme disease guidelines mandated by its agreement with my office. The IDSA agreed to review its Lyme disease guidelines after my office uncovered credible evidence of undisclosed conflicts of interest and other significant flaws in the process that produced the guidelines.
“We will carefully and comprehensively assess the final report and the review process leading to that report to determine whether the IDSA fulfilled the requirements of our settlement.”
How was this missed Baker, Whitley and Reinberg
And for the records, Long term antibiotics is the only thing that cured me, and nothing else.

Jolene of CT 2:18PM April 23, 2010

As soon as I saw "chronic" Lyme Disease I knew this report was going to be biased.
Most of the mainstream Dr's that I see (ie non Lyme treating drs') are accepting that Chronic Lyme exists and is a big problem. So why the need for "quotes"?
Yes, my disease does exist and it's Chronic. If you did a biopsy of my organs or studied my blood more than likely you would find real live germs!

Mojo of MI 11:31AM April 23, 2010

The IDSA is a bunch of money hungry a-holes that continue to allow people to suffer and die from this horrific disease. They want proof of a "continued infection", yet they have yet to prove that an infection ISN'T there.
They are so worried about long term antibiotic use, yet any high school kid can get years of antibiotics for something as simple as acne. WTF?
I am a sufferer of Lyme disease, and I passed it on to my three children. I fear for our future, now that we can't get insurance to pay for our needed treatment.
I pray that God judges these corrupt people and that they live an eternity in hell. This is a moral crime.

Brandi M. of KS 11:14AM April 23, 2010

I was one of the fortunate patients to be treated on long term antibiotics, one of many thousands around the World whose symptoms receeded on antibiotics and deteriorated off them.
I had severe arthritis and muscle weakness so that at one time I had difficulty standing and walking across a room. I was retired early on ill health grounds and it took 5 doctors and 3 Rheumatologists 4 years to diagnose me. My GP suspected Lyme Disease because of a beneficial response on a chance course of antibiotics. I was not aware Lyme Disease could be caught in the UK. I had visited the surgery at times of bites bulls eye rashes summer flu' and migrating arthralgias. Other cases had been confirmed at my surgery.
I was fortunate to have a thinking GP who treated me on my response to antibiotics because she read ILADS Guidelines. Eventually I consulted a Doctor who specialises in Lyme Disease and he confirmed clinically my GP's suspicions.
Politics and politics of medicine can argue indefinitely but my return to good health with no pain, no disability and no medication and to be able to garden again and cycle is good enough for me.
If IDSA wishes to close its mind to the benefits thousands of patients have, including doctors, to long term antibiotics and continues to support their discredited Guidelines because of the lack of Randomised Placebo controlled trials whilst holding the purse and refusing to do such trials the status quo may remain in their minds but will not in the minds of patients who can make their own decisions.
The presentations to the IDSA review panel from ILADS supporters is available for the World to see and make their own decisions.

Joanne Drayson 3:26AM April 23, 2010

For anyone to say "I think the attorney general was misguided by the [Lyme disease] activists," Whitley said. "I do not think his contention against the Infectious Diseases Society was either justified or warranted," he added. What a bunch of absolute hog wash!!!!!!
Lets expose the truth here folks the IDSA has financial ties to the insurance companies and does not want people to one get diagnosed or two get treated. People with persistent Lyme disease deserve to be able to treat the way their MD wants them to but the IDSA has made it so many insurance companies won't pay out on long term claims. I hope eventually the IDSA is no longer allowed to get away with murder!!!! They know the real truth about just how persistent a disease Lyme disease can be yet they continue to lie.

Marjorie Morgenstern of CA 11:01PM April 22, 2010