Lyme review panel members stir concern

At last, the IDSA (Infectious Diseases Society of America) has selected members to review the guidelines for the treatment of Lyme disease. Lyme awareness groups are alarmed at the placement of Carol J. Baker, MD, as the committee chairperson. Notably, there are also no ILADS (International Lyme and Associated Diseases Society) members on the review panel.

Lynn Shepler, MDJD, shares her concerns:

CAROL J. BAKER, MD, head of the new committee formed as a result of AG Richard Blumenthal's investigation, is Past-President of IDSA, and lists her chief interests as "VACCINOLOGY," "CLINICAL TRIALS," AND "VACCINE POLICY." She has published "more than 100 articles on vaccine research."

Dr. Baker is also a member of the Advisory Committee for Immunization Practices of the Centers for Disease Control and Prevention.

Was Dr. Baker a member of the Advisory Committee for Immunization Practices of the CDC at any point when past or future Lyme disease vaccines have been discussed --- formally, or informally?

The team she is part of at "The Center of Vaccine Awareness and Research" in Houston, Texas describes itself as "dedicated to improving the health of children from infancy through adulthood by promoting vaccinations and educating families and health care providers on all available vaccines."

Uh, does this include the Lyme vaccine(s)? Dr. Wormser's principal conflict of interest was that he was consulting to pharmaceutical companies on Lyme disease vaccines --- something he knew about and refused to disclose to IDSA administrators.

Dr. Wormser was head of each of the two IDSA guidelines on Lyme disease that have been issued. In my personal opinion, both versions of the IDSA guidelines have been biased in favor of vaccine commercialization.

By my reasoning, the need to deny the existence of persistent infection is part of the drive to commercialize Lyme disease vaccines that are not otherwise ready for market. Persistent infection is an important scientific problem that needs to be solved before any vaccine trials can be done. Instead, Wormser et al simply lie, and maintain the patients are sick with "something else."

So, instead of Dr. Wormser, we have a prominent vaccinologist, and former President of IDSA as the head of the committee? On the face of it, I find this very alarming!

(Please post this information to any Lyme disease discussion board to educate patients about the possible biases on the part of members of this new committee).

Following is a list of Lyme review panel members:

Carol J. Baker, MD,
Chair Baylor College of Medicine
Houston, TX

William A. Charini, MD
Peabody, MA

Paul H. Duray, MD (retired)
Westwood, MA

Paul M. Lantos, MD
Duke University Medical Center
Durham, NC

Gerald Medoff, MD
Washington University School of Medicine
St. Louis, MO

Manuel H. Moro, DVM, MPH, PhD
National Institutes of Health
Bethesda, MD

David M. Mushatt, MD, MPH & TM
Tulane University School of Medicine
New Orleans, LA

Jeffrey Parsonnet, MD
Dartmouth‐Hitchcock Medical Center
Lebanon, NH

Cmdr. John W. Sanders, MD
U.S. Naval Medical Research Center Detachment, Peru

Stevia poses no health risks

When you have Lyme, you can't do sugar. Some people can't tolerate honey, either. So how do you sweeten your tea? What do you put in your oatmeal? Stay away from Splenda. It's a bad alternative to sugar and may even cause a relapse of your symptoms (see the post on Jean Reist, RN for an example of Splenda's negative effects on Lyme patients).

The answer is stevia, a plant-based sweetener that has been popular in Japan and other countries since the 1970s. Stevia has been available in the US, however, it hasn't been promoted as a sweetener. Its status has recently changed. Watch for products made by Coca-cola and Pepsi to containstevia, which recently been vindicated by the Food and Drug Administration and found to pose no health risks.

"The [FDA] agency has granted the all-natural sweetener status as "generally recognized as safe" (GRAS) after Cargill and Merisant Company achieved a process called "Self-Determination of GRAS Status".

Valentine's day is closing in, and you can't get far from the heart-shaped boxes of sugar candies that are popping up in every store. If you've got a sweet tooth, be strong and ignore that chocolate urge. Be good to yourself while you're healing. Go get somestevia and try a couple of drops in your morning tea or steel cut oats. If you've never used it before, be forewarned: the stuff is strong! Go light. Couple of drops will do.

Expert Interview Series: Carol Fisch Part 2

We've just uploaded Part 2 of the interview with expert Lyme disease researcher, advocate and activist Carol Fisch. Adjunct Professor Emeritus of Laboratory Science, Carol discusses her experiences studying and teaching about the bacterial complex, Borrelia burgdorferi. Her students often ask her to give a simple explanation of Lyme. Below is a bit of her answer. For a more in-depth discussion please login and listen to the entire interview.

A simple explanation of
Lyme disease in not possible, as Lyme is not a simple disease. It is not just an infection with Borrelia burgdorferi the causative agent of Lyme disease. We are dealing with an illness complicated by multiple infectious agents; many of them are immune suppressive.

The immune system has difficulty in detecting the organisms that cause Lyme due to multiple factors, not least of all, its ability to change shape in order to survive -- surely one of its best tricks.

From the moment the Borrelia burgdorferi complex enters the body, it has the ability to clock itself into our own DNA proteins. When hit by anything threatening its survival, it can go into cell wall deficient (CWD) stages or into the cyst stage, where it is protected from
antibiotics and the immune system. An activated immune system, where the body is trying to find an enemy and can't, leads to reactivation of Herpes Virus 1 - 6, and auto immune issues.

Katy's story: Teens & Lyme

Katy says the hardest thing about having Lyme is that nobody understands.

She has trouble with word recall. She is susceptible to low blood sugar crashes. She is 15, and like so many others Lyme patients, at first her doctors misdiagnosed her condition, believing instead that she had a viral infection such as mononucleosis or Epstein Barr.

For six months Katy struggled against crushing fatigue and a painful skin rash, trying her best to keep up in school. Medications for the ailments doctors thought she had were only making her sicker. Her skin rash became so acute that her parents began to suspect their daughter might have contracted a flesh-eating virus. Fortunately, her grandmother, a registered nurse, listened carefully to her complaints and suspected that it might be Lyme. Her grandmother insisted Katy see a Lyme specialist. Katy's prognosis changed for the better when she received a correct diagnosis and subsequently began treatment with Dr. Chandra Swami, of Heritage, Pennsylvania.

Adults dealing with Lyme find it to be an alienating and frightening experience, but try being a teenager with Lyme -- and on top of that, a high-energy competitor. Katy excels in running and cheerleading and she is avidly honing her journalism skills and other pursuits. Her aim is to be a broadcast journalist, and in fact she is currently the "weather girl" for the local news station, which airs at her high school. Short-term memory loss isn't something that a young person should have to deal with. Imagine trying to survive the rigors of a normal school day!

For example, one day at school after diligently producing a video project and forgoing lunch, Katy experienced a vicious attack of low blood sugar. Recognizing that she'd better eat something immediately, she took out her sack lunch.

A school administrator snapped that she wasn't allowed to eat lunch sitting where she was. "Should I let all 900 students eat their lunch in here?"

"All the other 900 students don't have Lyme disease," countered Katy, put in the terrible position of having to defend herself for being ill.

One of the problems, says her mom, is that Katy looks great. She's vibrant and rosy-cheeked, and appears perfectly healthy. There's really no way for her teachers and school administrators to tell, simply by looking, that she struggles with painful symptoms every day.

Members, please login now and listen to Katy tell her story. Just wait until you hear what her lunchtime video project was all about, and why it was so engrossing that she forgot to eat. This young woman is a genuine inspiration.

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