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Dr. Raphael Stricker

Send your doc to SF

When I was receiving Lyme disease treatment in California, where I lived at the time of my diagnosis, my family doctor was a naturopath who had studied with ILADS physician Dr. Raphael Stricker and others with CALDA. I was extremely fortunate to have his expertise as he helped me battle the fight of a lifetime. In turn, he said he felt lucky to have the expertise, experience, and excellence of these Lyme specialists behind him.

Your doctor doesn't have to live in California to attend. People from all over the country are planning to go. Help us spread the word about the CALDA Lyme conferences coming up in San Francisco. To sweeten the pot, here's a way for him or her to get reimbursed for a portion of the cost:

From the CALDA website:

CALDA will reimburse up to $800.00 out-of-pocket expenses for any actively practicing MD, DO, ND, NP or PA in any state to attend the annual conferences put on by the International Lyme and Associated Diseases Society (ILADS) and the Lyme Disease Association (LDA). CALDA grants are limited and are only available to those qualifying professionals who are attending the conferences for the first time. Preference will be given to persons currently engaged in treating tickborne infections and who plan to attend both conferences.


The 2008 ILADS and LDA conferences will be held on October 17 – 19 at the Cathedral Hill Hotel in San Francisco. Please check the ILADS and LDA websites for details and to register at: www.ilads.org; www.lymediseaseassociation.org.
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Rick's Lyme success story

Rick, an active sports-lover, was married and starting a family. He was a runner, a cycler and a swimmer. His northern California lifestyle was the type most people can only dream of. "I would water-ski, snow-ski, do anything I pretty much wanted to, looking back. Then I'd hang out with my family, get into the car on the fly, and still have energy on the weekends," he says.

One day he woke up with a frozen shoulder. He was diagnosed with Rheumatoid Arthritis. Although Rick had been tested for Lyme, the tests had come back negative. His RA doctor told him, "Lyme doesn't exist in California. It's probably not that. You just need to consider that you have arthritis. Then he added, right in front of my wife, 'you have to trust the experts to help make you better,'" says Rick. He laughed. "I'm in sales," he explains. "Whenever I hear somebody say 'trust me,' I know I'm going to get f****d."

His RA doctor recommended surgery, which he had. The pain was still unbearable. He was sent from doctor to doctor and no one knew what the problem was. He spent over $25,000 in medical tests without receiving any answers. He was placed on medications that never seemed to help, and only made things worse. At one point, he was popping sixteen Advil per day, eight in the morning and eight at lunch. At night, he self-medicated with wine. The entire time he was sick, he hid his painful symptoms from everyone he worked with, and never complained, even to his wife. But he wasn't getting better and knew he couldn't go on like that.

Finally, at his wife's suggestion, he realized that he had to trust yet one more doctor. He had Googled "Lyme + doctor" and found a clinic in nearby San Francisco. He walked into the office of ILADS physician Dr. Raphael Stricker. When Dr. Stricker told him he had Lyme, he was flooded with intense relief. After only three weeks of treatment, his symptoms began to disappear.

Rick now considers himself to be about 90% better, and he's been able to return to some of the activities he loves. How did having Lyme change his life? In so many ways, he says. Specifically, his empathy for other peoples' hardship and pain. "My family says I'm nicer now," he adds, laughing.

LDRD members, you can listen to Rick tell his entire story in the members area.
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protest the IDSA guidelines

Read this comprehensive article published in Danbury CT that cuts to the heart of the matter:

Nov 28 2006 6:39 AM
Lyme disease activists to protest
By Robert Miller

THE NEWS-TIMES

Area Lyme disease activists, dismayed by recently released treatment guidelines for the illness, will go public with their protest Thursday, rallying at Westchester Medical Center/New York Medical College in Valhalla, N.Y., where the lead author of the guidelines works.

"They're highly restrictive,'' said Dr. Steven Phillips, a Ridgefield physician who is the former president of the International Lyme and Associated Diseases Society. "I just cannot understand why they've chosen to ignore all the data on this.''

"They were worse than we expected,'' said Maggie Shaw of the Newtown Lyme Disease Task Force.

"In a word, I think they're a disgrace,'' said Dr. Raphael Stricker of San Francisco, who is the current president of ILADS. "They're not relying on best science. They're relying on their opinion.''

The guidelines are so controversial that Attorney General Richard Blumenthal has intervened. His office is now investigating whether the group that wrote the guidelines, the Infectious Diseases Society of America, is a monopolistic organization trying to shape treatment of the tick-borne disease without allowing other treatment options to emerge.

"It's a medical issue but also a patient issue,'' Blumenthal said. "Their guidelines limit very severely the types of diagnosis and treatment available to patients. In a way, that's anti-competitive.''

The national guidelines issued by the Infectious Diseases Society of America recommend that doctors give patients with Lyme disease 10 to 28 days of oral antibiotics to treat the disease, with another month allowed for persistent symptoms.

But the guidelines -- now posted on the Web site of the Centers for Disease Control and Prevention -- deny the existence of chronic Lyme disease, saying there's no medical evidence that the bacteria that causes Lyme survives antibiotic treatment.

It also emphasizes using either the characteristic bull's-eye rash or blood tests to help correctly diagnose the disease -- two methods Lyme activists say can lead to Lyme cases being missed.

Diana Olson, spokeswoman for the infectious diseases society, said the 14 doctors who worked on the guidelines -- led by Dr. Gary Wormser, an infectious disease specialist at Westchester Medical Center/New York Medical College -- studied more than 400 published medical reports on Lyme disease before coming to their conclusions.

"This is the best science has to offer,'' she said.

Olson said the society could not take into account things like patients' anecdotal accounts of their Lyme disease treatment in writing the guidelines. Nor, she said, did it concern itself with whether insurance companies would pay for treatment outside those guidelines.

She also said that guidelines are just that, and that patients and doctors are free to find different treatments that work best for them.

She also said the society is cooperating fully with Blumenthal's office.

"In our experience, we've never heard of this kind of investigation,'' she said. "But we stand behind our methods and our recommendations.''

But Lyme activists and doctors who support a more liberal approach to treating the disease said the new guidelines are highly restrictive, not allowing doctors any latitude in treatment.

Perhaps the most contentious point is whether chronic Lyme disease even exists.

Many Lyme patients and their doctors contend the standard treatment for Lyme disease sometimes fails, or never gets administered to begin with.

When that happens, they say, the bacterial spirochete that causes the disease can re-emerge in the body, causing a bewildering array of symptoms -- including arthritis, chronic fatigue, heart problems, memory loss, depression, and neurological disorders including loss of sight and hearing.

To treat these symptoms -- and those of several other tick-borne illnesses, which can overlap -- these doctors recommend several months or even years of antibiotics, often using a mix of drugs.

The infectious disease society, however, said that these symptoms are "nonspecific'' and associated with many other illnesses, not Lyme infection. They also caution that there are medical problems -- including the development of drug resistance -- that should lead patients to avoid long-term antibiotic care whenever possible.

But Phillips of Ridgefield and Stricker of San Francisco said this approach ignores the hundreds of studies that now show the Lyme bacteria can bury itself in muscle tissue, lie dormant, then re-emerge.

"There (have) been 18,000 papers published on Lyme disease,'' Stricker said. "So saying you're looking at 400 means you've only looked at 5 percent of the research."

"The evidence just continues to grow and grow on this,'' Phillips said. "To ignore a whole section of this research, as if it doesn't exist, raises questions for me.''

Because of the prestige the infectious disease society carries, Lyme activists say insurance companies will now be even more adamant about refusing coverage beyond 28 days of antibiotics -- something, they say, that has already begun.

They also say the new guidelines will stifle new treatments, because doctors will fear they'll be disciplined if they step beyond the guidelines.

"This isn't theoretical,'' Blumenthal said. "It will come down to a matter of dollars and cents.''

Contact Robert Miller
at bmillernewstimes.com
or (203) 731-3345.
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