This was posted on another board that I go to. This person was originally diagnosed with CFS and FM and things kept getting worse, until she finally did some investigating on her own (she was a research scientist before all this). She did find out that she, and her son that is 10, have Lymes Disease. She has posted on Clouds about Lymes Disease and several people have gone to their Drs. and been tested for Lymes and sure enough, they do have it and are now under proper care and feeling better. This is a letter she just got from a Dr. that treats Lyme in the USA. I don't know if anyone is interested, but if you have tics you might be.
LYME DISEASE TALKING POINTS
By Ray Stricker, MD
Based on comments by Dr. Dan Kinderlehrer on the Today Show, June 10, 2002.
1. Lyme disease is an epidemic, already the fastest growing in the U.S., with new cases surpassing AIDS. It is
particularly bad in the northeast, upper Midwest and northern California, but the disease is virtually everywhere,
having been reported in 49 states. At present 180,000 cases have been reported to the CDC, but even by
conservative estimates this figure is probably off at least 10-fold; the actual number of cases may be closer to 100-
fold greater.
2. The epidemic proportions of this illness are staggering, but are being minimized by the government and
insurance industries because of the financial implications. In the meantime, doctors who are aggressively
diagnosing and treating this infection are being harassed by state medical boards: 2/3 of Lyme-treating doctors in
NY state are under investigation. The government tried to shut down one of the few labs that specializes in Lyme
diagnosis. They have succeeded in shutting down another. Medical journals are selectively publishing poorly
executed studies suggesting that Lyme disease is “hard to catch and easy to cure”; thus insurance companies don't
have to pay for long-term treatment.
3. Chronic Lyme disease is a catastrophic illness. It affects mainly the musculoskeletal system, the nervous system,
and the heart. Its manifestations can mimic chronic fatigue syndrome, fibromyalgia, rheumatoid arthritis, systemic
lupus, multiple sclerosis, Parkinson's disease, Lou Gehrig's disease (ALS), paralytic syndromes (e.g. stroke), brain
tumors and others. It can cause severe depression and psychosis ("it's hard to fight an enemy that has outposts in
your brain," according to one victim), and has resulted in suicides. Residents of psychiatric wards have a high
percentage of Lyme-positive blood tests. This is a bad disease, and most of its victims remain misdiagnosed and
untreated.
4. Most doctors are painfully unaware of how to diagnose or treat Lyme disease properly. There have been many
cases of people with fairly obvious infection, but their doctors totally and inexplicably missed it – not just country
docs, but also physicians in places like the Mayo Clinic and the New England Medical Center – this despite their
living and practicing medicine in Lyme-endemic areas.
5. Lab tests stink. Doctors mistakenly depend on these tests to make a diagnosis, but the CDC makes it clear that
Lyme disease is a clinical diagnosis based on history and physical exam, and the lab tests can confirm but not rule
out this infection. The Lyme disease spirochete has devised ingenious ways to elude detection by our immune
system, and most laboratory tests don’t fare any better. Nevertheless, doctors routinely rely on the lab data, and
suggest to many of their multi-symptomatic patients that their problems are psychological in origin.
6. The deer-tick is a veritable cesspool of germs. Probably most people with chronic Lyme disease have coinfections
with other microbes, such as Babesia, Ehrlichia and Bartonella. Multiple infections have an
immunosuppressive effect, making it even harder to treat the Lyme disease. Doctors know even less about these
other infections.
7. Antibiotics are important and occasionally life-saving. If given soon after the tick bite, they are fairly effective.
However, once Lyme disease becomes chronic (particularly if the infection is more than a year old) it is difficult for
antibiotics to clear it, in the same way that tuberculosis and other chronic infections may be difficult to eradicate.
Many people have been taking antibiotics for years, even intravenously. Adjunctive treatments for chronic Lyme
disease, such as hyperbaric oxygen, cholestyramine and immune modulation, are being investigated on a limited
basis, but research funds for all forms of Lyme disease treatment are essentially non-existent.
For more information about Lyme disease and other tick-borne infections, please visit the following websites:
· Lots of Links on Lyme Disease -
http://www.geocities.com/HotSprings/...yme-links.html
· Lyme Disease Association -
www.lymediseaseassociation.org
· Lyme Disease Network -
www.lymenet.org
· IGeneX Laboratory -
www.igenex.com
Fibromyalgia #75
Good morning
We had snow long before you did, but of course, it is long gone. Not supposed to have to much as El Nino is coming round this winter. That isn't good, as the drought will continue, and spring will be a disaster without any snow. If we don't get the spring rains again next year, we are going to be in serious trouble.
