I will go on the record once more to say that it will be scientific researchers who will unlock the mystery of chronic Lyme disease (and in fact, if any of the IDSA panel had given even a cursory glance at the significant findings with respect to DNA/Lyme  discoveries there would have to be some kind of change to the IDSA Guidelines.)  I think it is appropriate to add the additional caveat:  Politicians will become involved whether they want to or not.

As the number of the infected soar, and the number of those who truly suffer from lack of care continues to spiral into numbers unknown and not counted, it is only a matter of time before the power is taken out of the hands of the obviously dishonest medical organization “The Infectious Disease Society of America”, and put into the hands of a third party without any interest, attachment to outcome, financial or otherwise.

(Remember that the pride of some of these medical doctors who have invested most of their careers to a certain expertise…the pride involved is so powerful it cannot be measured.)

Health.com reported after the press release on the official review.

“… the committee’s affirmation of the guidelines is seen by some to be a whitewash because, they claim, the review process was biased.

Dr. Robert Bransfield, president of the International Lyme and Associated Diseases Society, said: “How can there be such total consensus with any scientific issue? It’s beyond comprehension.”

Bransfield added, “It makes me wonder about the accuracy of the process. This is what everybody was expecting that they would do: a process that would rubber-stamp it and basically validate what was there before. It’s a concern because it does compromise the best interest of patients.”

Another critic, Dr. Raphael B. Stricker, a San Francisco physician who treats chronic Lyme disease, said that “when the panel votes eight-nothing on almost every single recommendation, that suggests that there is something wrong with the process.

“Until we get a really objective review by an objective panel that’s not all in Infectious Diseases Society of America’s pocket, you are going to get the kind of thing you see with this, and that’s a problem,” Stricker said.

Another excellent response to the IDSA vote comes from Dr. Elizabeth Maloney in The Star Tribune (.com):

Dr. Maloney says, “The IDSA is concerned about the “overuse” of antibiotic treatment in patients with persistent symptoms. It states that the evidence doesn’t support additional antibiotics and recommends against retreatment. The conclusions are based on the results of four retreatment trials funded by the National Institutes of Health. However, a careful reexamination of that evidence found that two of the studies were so improperly designed that they should be ignored. The other two demonstrated one patient type that benefited from additional treatment.

Thus, while the IDSA’s viewpoint was emphasized in the April 12 article, it isn’t scientifically valid. This may surprise the many physicians who follow the IDSA guidelines on Lyme disease. But science and medicine are supposed to be based on the facts, not on majority rule, and the evidence clearly demonstrates that retreatment helps some patients.

What we don’t know is who else should be offered additional antibiotic treatment and what form that treatment should take. Studies to answer these questions have yet to be done, but today’s patients can’t wait for tomorrow’s research.

Until we have answers, doctors caring for patients must do so to the best of their ability. Practice guidelines may present a reasonable starting point, but recommendations made on a generalized basis should never be substituted for the clinical judgment of the doctor treating an individual patient.

Treatment decisions should be based on the health, financial and quality-of-life costs associated with ongoing, untreated Lyme disease, as well as on the risks associated with treatment. All medical treatments carry risks; in general, the risks of carefully managed antibiotic treatment are low.

Finally, I wanted to share a very moving “open letter” published by “Under Our Skin’s Blog” and written by Jordan Fisher Smith, the eloquent park ranger featured in UNDER OUR SKIN and the author of the acclaimed naturalist book “Nature Noir,” has written this open letter to the Infectious Diseases Society of America (IDSA), in response to the society’s decision to make no changes to their controversial 2006 IDSA Lyme Disease guidelines:

To the Infectious Diseases Society of America:

Almost twelve years ago, I was bitten by a tick at work, and contracted Lyme Disease and Babesiosis. Because of the job you’ve done at diminishing the perception of danger about tick-borne disease and pressuring doctors who treat it aggressively out of business, it took a year and a half and a nationwide search to find a doctor who would treat me.

By then I was dreadfully ill, and as a result I lost my job and my 21-year career. In my first year of antibiotic treatment I got worse. I pursued aggressive treatment for another six years, during which time I got steadily, if slowly better. During this time one of my two doctors was forced out of practice as a result of your work. Thanks to my heroic physicians, I am recovered after a nine-year battle with tick-borne disease. And I am now contributing to society, working, and raising my kids.

Your ineffectiveness and the extent of your compromise with the Insurance and HMO businesses are noted. You and your work will be forgotten eventually, as we have forgotten the names of the opponents of Copernicus. Shame on you for the suffering you are causing on the way to your eventual obscurity as prideful scientists who called it tragically wrong. The monument to your life’s work is an unchecked epidemic.

—Jordan Fisher Smith, recovered victim of tick-borne disease

The intensely oppositional theories about Lyme disease and the proper treatment of Lyme disease is widely spread and frequently debated between Medical Societies, University Medical Centers,  medical practices, politicians and scientists around the world.  However, it is less often that these groups argue amongst themselves publicly.

Last week sent a wave of delight (for Lyme groups) and shock (from the conventional medical establishment) when the Association of American Physicians and Surgeons, Inc. spoke out against the IDSA Guidelines in a press release: http://www.aapsonline.org/testimony/lyme-disease-guidelines-comments.php.

I have just become aware of another schism that is occurring just miles from Columbia University’s Lyme and Tick Borne Disease Research Center, located in northern Manhattan NYC at Yale University’s Medical Center in New Haven, CT where the IDSA guidelines have held sway since their inception.  I had the privilege of seeing Dr. Amiram Katz,  assistant clinical professor of neurology at Yale, believes that denying the possibility of persistent infection is counterproductive and ultimately harmful.

“In the textbook of pathology, which every medical student reads, it is written that there is chronic Lyme.… We know from syphilis [a spirochetal infection similar to Lyme disease] that this type of bacteria, the spirochete, can be alive and persistent, though at times dormant,” he says. Katz asserts that refusing to accept the evidence for chronic infection is “an example of how people are going to an extreme and damaging both themselves and the patients.”

On May 2, 2009, Dr. Andrew Wilner reported online (complete story on the Doctor’s Guide Peer View) about a study conducted by Dr. Katz and presented in Seattle Washington at the American Academy of Neurology (AAN) 61st annual meeting.

Dr. Katz has been treating patients with persistent neurological symptoms with infusions of immunoglobulin (in appropriate medical cases) and finding remarkable success.

Dr. Wilner reported that all patients were treated with immunoglobulin for at least 6 months, and that after the treatment 100% of his patients showed improvement.

“The diagnosis of chronic Lyme disease is not widely accepted, yet these patients have symptoms and nerve biopsies that respond to IVIG treatment, legitimising their complaints,” concluded Dr. Katz.

I don’t know if I will be given this immunoglobulin treatment or not, but I am excited to be under the care of a logical thinking scientist and medical doctor who look at the evidence instead of listening to the predjudice of their colleagues “belief system.”

As more and more medical doctors push their way out of the box to help their desperate and suffering patients to find that longer courses of antibiotics acyually improves symptoms – the faster mainstream medicine will be forced to re-evaluate their position.  Of course we all hope that the re-writing of the IDSA guidelines will be influenced by doctors who are successfully treating Lyme disease and NOT theorotizing academicians  or doctors with no experience at all!

Additional hope comes from the political sector. Last Thursday afternoon (April 30, 2009), in Hartford, Connecticut, the House of Representatives unanimously voted, just as the Health Committee had, on a bill that takes what will hopefully be viewed as a nationally recognized stand in the heated debate over the existence of chronic Lyme disease.

“It comes down on the side of people who suffer from Lyme in this big debate,” Rep. William Tong, D-Stamford, a bill co-sponsor, said according to Greenwich Times following the vote. “It says the scientific community can have that debate but we’re not going to let anybody else go without treatment.”

Brian Lockhart, staff writer for Greenwich Times further wrote:

“Although the state Department of Public Health does not expressly forbid long-term antibiotic treatment for Lyme, the national Infectious Diseases Society has dismissed chronic Lyme as a myth.

Those who believe in chronic Lyme argue this makes state physicians fearful of being reported to the health department if they choose to recognize and treat chronic Lyme.

“There is a ‘chill effect’” on doctors, Rep. Jason Bartlett, D-Bethel, said.

Rep. Kimberly Fawcett, D-Fairfield, who helped spearhead the bill, told her colleagues prior to Thursday’s vote:  “We recognize this controversy in diagnosing this disease. But let’s give our doctors the freedom and autonomy.”

Rep. Scribner, R-Brookfield, a member of the legislature’s Public Health Committee, agreed.

“We’ve witnessed many people who have suffered long term,” he said. “I strongly urge all the chamber to consider this measure which I think is a very responsible measure.” The Connecticut Medical Society supported the bill. The Society is not taking a stand on chronic Lyme disease but believes physicians should have the right to treat patients as they see fit.

The legislation would require a chronic Lyme diagnosis be made based on medical history and a physical. It only allows long-term antibiotics for chronic Lyme disease and the language does not preclude the state from investigating physicians for wrongly prescribing medicines.

Thankfully this bill appears to be on a fast track to become law in the very state where Dr. Katz is branching out into new medical territory with immunoglobulin infusions.  By taking the fear of litigation from the medical board away, pioneering medical doctors with intuitive genius (not only like Dr. Katz but the Lyme pediatrician Dr. Jones,  Psychiatrist Brian Fallon and Pathologist Dr. Alan B. MacDonald to name just a few) to continue their brave exploration into the frightening territory of chronic neurological Lyme disease.