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Please go and see the patents many of the IDSA/CDC personnel own, and how they narrowed the disease defination of Lyme to profit off the sick and dying.

http://www.lymecryme.com

View LymeCryme Overview PowerPoint presentation:
http://www.lymecryme.com/rich_text_18.html

HELP END THE SUFFERING!

EMPOWER yourself, EMPOWER others...

Isn't this simply case of of legislator representing his/her constituents.

There have to be a LOT of Lyme victims, er patients in both VA and NJ that deserve better treatment for their Lyme than the medical industrial complex currently provides. My hats are off to these congresspeople.

Thanks :)

Anne W said it right. IDSA did not put together a review panel out of the goodness of their heart, they were forced to after the Conn. Attorney General uncovered proof of bribery and anti-trust violations. This article once again mentions clinical trials proving chronic lyme doesn't respond to antibiotics, yet no one has ever seen this research that supposedly exists?? Sounds like an IDSA doctor wrote this article.

Had to laugh at the "study" posted above.
I find it amusing that they found that over 45% Chronic Lyme Disease patients have "Fibromyalgia"--no kidding!
The American College of Rhuematology states that "Fibromyalgia" is diagnosed by the patient having "unexplained" pain and that they have tender points--11 out of 18. They state that the pain condition is caused by depression and low levels of serotonin.
This diagnostic criteria (as weak and unscientific as it is)is rarely followed as many patients get dumped in this wastebasket because their physicians lacks creative thinking skills or just do not care--and the health insurance companies just LOVE this *non-diagnosis diagnosis* because what is the cost of treating this strange but "incurable" illness? Not much. Give the patient some Anti-depressant or Xanax and send them packing.

Unfortunately,I was diagnosed with Fibromyalgia by an inexperienced Endocrinologist--I had NO tender points whatsoever-- let alone 11 out of 18--yet I got tagged with this "diagnosis" anyway.
After two years of steady decline in my health--becoming unable to work or attend grad school, I saw a good doctor--had many tests the other doctor never even bothered to order.I had my serotonin levels checked and they were not low or even medium range--but at the HIGH end of the normal range--I am a petite and thin woman--my body had no shortage of serotonin! I had/have plenty of serotonin,I was not depressed, but I became very ill with joint pain, swelling, fatigue, hair loss, anemia, tremors, etc. Finally a rheumatologist familiar with Lyme Disease tested me. I had a Western Blot test, it came back CDC positive. I also tested positive for Bartonella, CPN, Mycoplasma fementans and reactivated HHV6.
I had taken doxycycline for 2.5 months. Went off, months later, joint pain, swelling came back, tested positive IGM Western Blot.
So much for short term treatment working for me--I have to go back on antibiotics--this time minocycline as my neuro/joint/fatigue symptoms have increased.

The so-called "Fibromyalgia" diagnosis created a situation to develop late Lyme.
Imagine being diagnosed with a *non-diagnosis diagnosis* like Fibromyalgia only to end up sicker?

Tell me about Fibromyalgia, I'll tell you you're short on science for "Fibromyalgia" is a way to classify patients--it's NOT a diagnosis in and of itself with ANY scientific weight.

Since this is a Science web site, I'd like to re-focus on the scientific aspects of this "great Lyme debate". So, lets talk science!

1) Medical research frequently does not meet the criteria of science. It does produce useful results in many cases, but since many medical researchers do not have a scientific background (e.g. have no PhD.) the quality of their "research" varies widely.

Despite the fact I am neither an MD nor a Scientist, I am well enough educated to see flaws in many of these studies and my friends and family who are scientists have confirmed this impression for me.

I am a Lyme patient and as such I do wish to see good science done on this topic.

2) The core hypothesis in the post-Lyme side of this debate is the assertion that after "treatment" the symptoms of Lyme Disease cease to be caused by a borrelial and co-infections and instead are caused by a hypothetical non-infectious "post lyme syndrome" proposed by proponents of this hypothesis.

3) Extraordinary hypotheses require extra ordinary proof. For example a Hypothesis that Lyme the disease infectious agent(s) becomes harder to treat (or even impossible to treat) after initial "treatment" would require quite little proof versus the "post lyme" hypothesis that claims the entire nature of the disease changes from an infectious process to some other cause.

4) One cannot prove the absence of something. For example, one cannot prove that earth is the only planet in the Universe that has life. The best we can conclude is that despite some degree of effort we have not been able to prove their is life on other planets.

Thus it is not possible to prove that any treatment has eliminated Borrelial and co-infections from the body.

Then again, there is a wide body of evidence that many treatments do NOT eliminate Borrelial infection and be cultured from such treated people.

5) The principal of "Parsimony," or Occam's Razor will be recognized by the scientists reading this post. As you know, this is the principle that all other things being equal, the simplest explanation is preferred on this basis.

Therefore, the simple notion that an infection might persist beyond treatment clearly is preferred to some complex post-infection explanation.

Given the impossibility of proving a lack of infection, this means the bar is quite high for proponents of other theories. The exact mechanism would need to be known and would need to explain and predict features of the disease before such a theory could begin to compete on equal *scientific * basis to the persistent infection theory.

So, to conclude, the scientific part of this debate is easy: the persistent infection theory is without a doubt the winner given what we know.

Now, regarding "treatment studies". These studies can and should be done on the basis of finding the best treatments for patients. The great debate should have no bearing whatsoever on treatment studies.

Treatment studies in fact cannot prove or disprove the above debate in any case. However, given the facts I have enumerated, and the conclusion that persistent infection is the hands down winner so far, treatment studies must include anti-microbial treatment.

They must compare different anti-microbial treatments and determine which is best - leaving infected individuals untreated is both unethical and goes against the science of this matter.

Sincerely,

Rolf Taylor
Cleveland Hts, OH

Arthritis Rheum. 2008 Nov 26;59(12):1742-1749.
Role of psychiatric comorbidity in chronic Lyme disease.

Hassett AL, Radvanski DC, Buyske S, Savage SV, Gara M, Escobar JI, Sigal LH.
University of Medicine and Dentistry of New Jersey-Robert Wood Johnson Medical School, New Brunswick.

OBJECTIVE: To evaluate the prevalence and role of psychiatric comorbidity and other psychological factors in patients with chronic Lyme disease (CLD). METHODS: We assessed 159 patients drawn from a cohort of 240 patients evaluated at an academic Lyme disease referral center. Patients were screened for common axis I psychiatric disorders (e.g., depressive and anxiety disorders); structured clinical interviews confirmed diagnoses. Axis II personality disorders, functional status, and traits like negative and positive affect and pain catastrophizing were also evaluated. A physician blind to psychiatric assessment results performed a medical evaluation. Two groups of CLD patients (those with post-Lyme disease syndrome and those with medically unexplained symptoms attributed to Lyme disease but without Borrelia burgdorferi infection) were compared with 2 groups of patients without CLD (patients recovered from Lyme disease and those with an identifiable medical condition explaining symptoms attributed to Lyme disease).
RESULTS: After adjusting for age and sex, axis I psychiatric disorders were more common in CLD patients than in comparison patients (P = 0.02, odds ratio 2.64, 95% confidence interval 1.30-5.35), but personality disorders were not. Patients with CLD had higher negative affect, lower positive affect, and a greater tendency to catastrophize pain (P CONCLUSION: Psychiatric comorbidity and other psychological factors distinguished CLD patients from other patients commonly seen in Lyme disease referral centers, and were related to poor functional outcomes.

note: Regrettably, the CT A.G. did not participate in the study.

University Davis California has identified that the B. burgdorferi spirochete that causes Lyme disease will convert into a metabolically dormant state when antibiotic is administered. What this means is the duration of antibiotic use, unless it is life long, will not eliminate the symptoms of Lyme disease. As soon as antibiotic is discontinued, the spirocette will emerge to once again invade tissue and reproduce.

"Science Insider"? "Breaking News and Analysis"? You might want to live up to the hype by actually investigating this topic. A good start would be to view Open Eye Picture's "Under Our Skin" and discussions with physicians, yes, physicians, from both sides. This is not a doctor vs. patient debate, it is a science debate. Do your job, talk the science, and stop being a mouthpiece for the IDSA. My entire family has lyme, including a six year old whose diagnosis was delayed three years because testing required a bulls-eye rash. ILADS guidelines and Dr. Jones saved her, not JHU, not Childrens National Medical Center (supposedly full of experts). The science is there, if you choose to read it.

Anne

These are the sentences referred to as being "pure spin" in CALDA's remarks above:

"IDSA recently began assembling an independent panel of eight to 12 people to review its guidelines for Lyme treatment. A spokesperson told ScienceInsider, "We took this extra step to say, 'Okay [if] you don't believe us, let's put this out for review.'"

The IDSA entered into a legal agreement with the state of Connecticut in the wake of AG Blumenthal's investigation. This was not a friendly "extra step" on the IDSA's part, nor a regular periodic review (as stated in print by other IDSA Lyme guideline authors). The review was a response to a legal investigation into anti-trust allegations. Simply put, it's cheaper than litigation.

We must never underestimate the power of the medical Establishment when they work along with Big Pharma--when patents and money are involved, patient care takes a back seat, money, insurance regulation, politics takes front and center position.

This article fails to mention the studies done by ILADS affilliated physicians such as Dr. J. Burrascano.They also fail to mention ANY physicians(or scientists) with clinical or research experience with late stage or persistent Lyme Disease--only the IDSA is mentioned.

I find this article to be one-sided, cynical and dishonest.

This article mischaracterizes the debate. The Lyme debate has never been between science on one side and patients on the other, it has been between, on the one hand, the small group of doctors and researchers with known conflicts of interest associated with the IDSA guidelines development (as well as people in their immediate sphere of influence), and on the other hand, the larger (but still small) group of doctors and researchers who actually treat and deal with Lyme patients (as well as their patients).

Your article should have pointed out that there are very few research studies, and scientists on BOTH sides have completely different interpretations of them. I am left to wonder why your article only presents the one side and not the other. There is more scientific evidence to treat Lyme long-term than many other diseases, yet this manufactured controversy continues while tens of thousands suffer unnecessarily, hence the need for Congressional hearings.

Dr. Willy Burgdorfer, long-time spirochetal diseases researcher, honored by the IDSA with one of their most prestigious awards, and after whom the spirochete that causes Lyme is named, has weighed in on the debate and deemed long-term treatment necessary for late-stage infection. I'd stack his scientific chops against those of the IDSA panelists any day, especially since many of those IDSA panelists (for some reason) vastly overinflate their experience dealing with Lyme patients and the disease.

Ideally authors of medical guidelines should have no commercial interests in the treatments that they are recommending. They should conduct an unbiased review of the latest medical research.

But if you look at the current IDSA Lyme guidelines authors:

--6 of the 14 authors or their universities hold patents associated with Lyme or coinfections.

--4 of the 14 have received money from Lyme or coinfection test kit manufacturers, and the new guidelines make these insensitive tests mandatory.

--6 of 14 have written insurance policy guidelines or testified against front-line Lyme doctors in Medical Board reviews

--9 of 14 authors or their universities have received money from Lyme Disease vaccine manufacturers, past or present, and several have been involved in adverse effect lawsuits associated with the vaccine clinical trials that they participated in.

--Of the 200 Lyme-specific journal citations listed at the back of the 2006 IDSA Lyme guidelines, about half were written by the guidelines authors or people in their labs. And in our opinion, their review was not an open-minded evaluation of the over 8,000 publications on Lyme diseases.

In the making of the investigative documentary on Lyme disease, UNDER OUR SKIN, it took years to dig up these conflicts, which were largely undisclosed until the CT Attorney General started their investigation into the IDSA panelists.

Kudos to Rep. Wolf for bringing the IDSA's panel biases into the sunlight.

Kris Newby
Senior Producer
www.underourskin.com

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

Here's the link for the AG's website. As stated above, it's purely scientific fraud by insiders working with pharmaceutical companies and/or with their own financial interests in the disease. As background, in 1980, the U.S. Supreme Court said that researchers could patent, and thus "own" microoganism that they discovered. The organism that causes Lyme disease was discovered in 1982. And, around that time, during the Reagan era, Congress loosened restrictions on universities and researchers being permitted to get money from the patents issues to them through federal funding. (This was called the Bahy-Dole Act.) These changes by the US Sct and by Congress have set the stage for the greed, and the lies told in service of greed exemplified by the IDSA guidelines. As part of the Congressional legislation, the universities were supposed to "manage" the conflicts of interest by the researchers, but they have essentially abdicated their responsibility. Just take a look at recent stories in the New York Times on the work of Senator Grassley, and the failure of prominent physicians such as Joe Biederman, MD at MGH, or Charlie Nemeroff, MD to inform their institutions of the enormous sums they are receiving from pharmaceutical companies. Although this is a slightly different circumstance (the money is from pharmaceutical companies and not royalties from patents), it gives you a sense of how corrupt academic medicine has become, and how universities turn a blind eye to whether a faculty member is complying with conflict of interest regulations. The magnitude of the fraud with respect to Lyme disease, though, is like anything seen in medicine before ---- imagine, thousands of people unable to get medical care because of the greed of a tight knit group of researchers bent on becoming millionaires! Not to mention the universities that also hope to become "millionaires" by virture of the patents issued to the institution being successfully commercialized by a pharmaceutical company. This money obtained through licensing can add significant sums to a university's bottom line. For example, the President of Yale projected they would make $10 million a year from the Glaxo Lyme vaccine, before it was pulled from the market. Universities have an incentive not to look too closely at their faculty members conflicts of interest because the universities, also, have conflicts of interest. But this was all set up by Congress. Congress now needs to jump back in, investigate the fraud that has gone on related to this disease so that people can obtain medical care, and then tighten up the rules that apply to researchers and universities. It would be too much to ask that the US Supreme Court overturn the decision that microorganisms can be patented and "owned," but, truly, is it fair that things like microorganisms, found in nature, not created or "invented" by any person be subject to being "owned"?

We've seen what deregulation and greed on Wall Street has done to our markets. We, and the rest of the world are experiencing one of the worst financial crisis in history. I see the Lyme disease fraud as part of the laundry list of what deregulation has wrought Human beings cannot be trusted to act ethically and responsibility when there are no restraints re: access to $$$

Please arm yourself with the scientific data, they have/are committing scientific fraud.

http://www.lymecryme.com

Read The Dearborn Conference "How the Test was Spun" to see how and why we are being misdiagnosed with the 41+ year old ELISA (screening neurological chronic Lyme infected people out) testing. They do not want to pay for our long term treatment.

Please read it, for you and your loved ones.

Counterpoint: long-term antibiotic therapy improves persistent symptoms associated with Lyme disease.
Stricker RB.

International Lyme and Associated Diseases Society, Bethesda, MD, USA. rstricker@usmamed.com

BACKGROUND: Controversy exists regarding the diagnosis and treatment of Lyme disease. Patients with persistent symptoms after standard (2-4-week) antibiotic therapy for this tickborne illness have been denied further antibiotic treatment as a result of the perception that long-term infection with the Lyme spirochete, Borrelia burgdorferi, and associated tickborne pathogens is rare or nonexistent.

METHODS: I review the pathophysiology of B. burgdorferi infection and the peer-reviewed literature on diagnostic Lyme disease testing, standard treatment results, and coinfection with tickborne agents, such as Babesia, Anaplasma, Ehrlichia, and Bartonella species. I also examine uncontrolled and controlled trials of prolonged antibiotic therapy in patients with persistent symptoms of Lyme disease.

RESULTS: The complex "stealth" pathology of B. burgdorferi allows the spirochete to invade diverse tissues, elude the immune response, and establish long-term infection. Commercial testing for Lyme disease is highly specific but relatively insensitive, especially during the later stages of disease. Numerous studies have documented the failure of standard antibiotic therapy in patients with Lyme disease. Previous uncontrolled trials and recent placebo-controlled trials suggest that prolonged antibiotic therapy (duration, >4 weeks) may be beneficial for patients with persistent Lyme disease symptoms. Tickborne coinfections may increase the severity and duration of infection with B. burgdorferi.

CONCLUSIONS: Prolonged antibiotic therapy may be useful and justifiable in patients with persistent symptoms of Lyme disease and coinfection with tickborne agents.

That final sentence is pure spin. Take a look at the Connecticut AG website to see why IDSA really agreed to a monitored new panel to review those questionable guidelines.