The Political Climate Surrounding Lyme Disease

[Lymetoo]

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

[Lymetoo]

"We stand behind the method we've used to develop those guidelines," Olson says. "They are based on science - they represent what our experts believe are the best that science has to offer."

"Our guidelines are voluntary," Olsen adds. "No guidelines can be a substitute for a clinician's judgment."

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"VOLUNTARY" - UNTIL state medical boards use the new IDSA guidelines to go after LLMDs.

"VOLUNTARY" - UNTIL your insurance co. refuses to cover your treatment based on the guidelines.

"THE BEST THAT SCIENCE HAS TO OFFER"

- except for the 98% of Lyme research ignored by the IDSA.

- except that two out of three NIH-funded clinical trials say abx HELP!

- except that Klempner's OWN research shows Lyme is an intracellular infection.

- except that the cyst form was ignored.

- except for studies proving seronegative Lyme exists & that testing is unreliable.

The IDSA cannot POSSIBLY defend this position, UNLESS WE LET THEM!!!

DON'T LET THEM GET AWAY WITH THIS! PLEASE BE THERE NOV. 30 if AT ALL POSSIBLE!!!

[Rachel--24]

I asked my Dr. about all this....what he said did not sound good.

He was saying that they are no longer allowed to treat Lyme with more than 21 days of antibiotics. This started about a month ago.

He said that unfortuantely the medical community is divided on this. Half of the doctors do not acknowledge chronic Lyme. They will call it Fibromyalgia, CFS, arthritis....anything but Lyme. He said the "smarter" half realize that this disease requires more than 3 weeks of antibiotics....especially in late stages. People do NOT get better on 21 days of abx. All of the evidence is there to support this....but as always it comes down to money.

If every person were diagnosed and able to recieve antibiotic treatment the numbers would be staggering and the costs for longterm treatment for all Lyme patients would exceed what the insurance companies can handle. So instead....they bury their heads in the sand and ignore Lyme Disease.

It is the insurance companies who have a HUGE role in why this disease isnt getting proper attention. Its much more cost effective to diagnose "incurable" conditions such as Fibro and CFS.

So now....for those of us who are diagnosed and needing treatment....they are limiting that treatment to only 3 weeks of antibiotics. If we are still sick.....oh well....its not Lyme Disease because we've had our 21 days of antibiotics so if the symptoms persist...it must be CFS or maybe its "all in our head".

Its unbelievable that this can happen....even with all of the research and evidence clearly showing that this is not a disease which is easily curable with 3 weeks of antibiotics.

The doctors who are familiar with Lyme Disease and are treating patients appropriately will now be less likely to do so....for fear of backlash.

It scares me.

DON'T LET THEM GET AWAY WITH THIS! PLEASE BE THERE NOV. 30 if AT ALL POSSIBLE!!!

I cant be there...I'm in California.

[Lymetoo]

He said that unfortuantely the medical community is divided on this. Half of the doctors do not acknowledge chronic Lyme. They will call it Fibromyalgia, CFS, arthritis....anything but Lyme. He said the "smarter" half realize that this disease requires more than 3 weeks of antibiotics....especially in late stages. People do NOT get better on 21 days of abx. All of the evidence is there to support this....but as always it comes down to money.

If every person were diagnosed and able to recieve antibiotic treatment the numbers would be staggering and the costs for longterm treatment for all Lyme patients would exceed what the insurance companies can handle. So instead....they bury their heads in the sand and ignore Lyme Disease.

It is the insurance companies who have a HUGE role in why this disease isnt getting proper attention. Its much more cost effective to diagnose "incurable" conditions such as Fibro and CFS.

You got it! It really stinks.

I won't be there either. Would love to go!!!!

[Ursa Major]

Will doctors still be able to prescribe the antibiotics, if patients pay for them out of their own pocket after the insurance company stops paying for them? Even though it would be wrong and unfair to having to pay for it yourselves, it would be better than staying sick.

[Lymetoo]

Will doctors still be able to prescribe the antibiotics, if patients pay for them out of their own pocket after the insurance company stops paying for them? Even though it would be wrong and unfair to having to pay for it yourselves, it would be better than staying sick.

I'm really not sure. If they are "independent" drs and most are by necessity....then they should be able to prescribe them. Most "LLMD's" are NOT affiliated with any HMO's or other insurance companies. But a person's insurance could refuse to pay for the meds.

If worst comes to worst, people could get meds from Mexico or Canada. If the climate gets too rough for the LLMD's, then there will be alot of needless suffering. Things were already bad, now it's even worse.

Thankfully for me, I'm doing very well. I have a rife machine that I use for treatment, as well as the mangosteen juice I drink everyday.

I took antibiotics for four years straight. It was H***.

[tarnalberry]

In the US, yes, a person will have the option (medically, if not financially) to pay for antibiotics out of pocket, as the doctor can still prescribe them without the insurance ever knowing they've been prescribed, if no claim is filed. That is one of the good things about private health systems, really, though it's only a benefit to those who can afford to use it. I don't know how it would play out in a public health care system.

While I can *understand* the politicalization of this stuff due to finances (if insurance companies are forced into untenable situations, and then can't provide health coverage for *anyone* that isn't a step in the right direction either), it's frustrating that they don't accept that perhaps they need to find new answers to the problems, because the existing answers are unacceptable. (I recall blood testing for AIDS in the public blood supply was a similar issue, actually.)

[Lymetoo]

Missing the mark

Originally published November 30, 2006

Lyme patients - many of them afflicted with debilitating ailments that began with the bite of a tiny tick - have traveled from Maryland and a dozen other states to a medical center in Valhalla, N.Y., where today they will demand that the Infectious Diseases Society of America retract medical treatment guidelines it released last month. Lyme disease sufferers experience headaches, fatigue, chills, fever and, in advanced cases, heart and nervous system problems. The last thing they needed was to have their pains burdened additionally by a segment of the medical community that by recommending against long-term antibiotic use essentially threatens to reduce the quality of care they receive.

Maryland averages about 17 reported cases of Lyme disease per 1,000 residents, ranking it seventh in the country. Most of the cases can be found on the Eastern Shore, where not only are infected ticks plentiful, but Lyme disease education is promoted aggressively by volunteer health-service activists who also happen to be Lyme patients.

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The illness is easily misdiagnosed and frequently undertreated. Lyme patients have no shortage of horror stories about how their early symptoms were casually dismissed as arthritis, a lack of sleep and proper diet or, even worse, an emotional disorder, before they found a sympathetic physician who finally pinpointed the problem and prescribed antibiotics. In too many cases, the prognosis came late and the patient had to accept living with the disease.

The most contentious piece of the new IDSA guidelines is a claim that long-term use of antibiotics is not a remedy and that they should not be prescribed beyond initial preventive doses. Lyme patients and their doctors are understandably shocked by this assertion. Their own experiences tell them differently. And though adherence to the guidelines is voluntary, the implications are that insurance companies and HMOs will refuse to pay for further antibiotic treatment and that doctors, even against their better judgment, will stop prescribing for fear of being brought up before medical boards.

Maryland's Lyme-literate physicians and their patients would have had some protection against the IDSA guidelines had a prescient bill addressing this issue made it through the state legislature in 2005. By the time the bill came up for a final vote, it was so watered down in favor of the insurance industry that even its original backers sanctioned its demise.

On the matter of helping Lyme patients cope with the disease, the IDSA - like the 2005 legislature - missed the mark by a mile.

[rinne]

I read one stat that said 10% of all Lyme patients are also Celiacs and it seems like many more Lyme patients avoid gluten without any idea about Celiac disease.

[Lymetoo]

I read one stat that said 10% of all Lyme patients are also Celiacs and it seems like many more Lyme patients avoid gluten without any idea about Celiac disease.

Yes, many avoid wheat and grains because of the risk of systemic yeast if they do not. I found out many years ago that I felt better if I avoided wheat....but didn't get the whole picture.

another article about the very successful rally in NY:

By LIZ ANDERSON

THE JOURNAL NEWS

At a glance

The debate at hand is how to treat patients with long-term symptoms that appear to be caused by Lyme disease.

New guidelines from the Infectious Diseases Society of America say prolonged antibiotic treatment "has not proven to be useful."

A different group, the International Lyme and Associated Diseases Society, supports the use of long-term antibiotics in some of these cases.

Patients and advocates at yesterday's rally oppose IDSA and back the ILADS position.

VALHALLA - Hundreds of people rallied yesterday outside Westchester Medical Center to decry new treatment guidelines for Lyme disease that discourage the use of long-term antibiotics to treat lingering symptoms.

The voluntary guidelines were issued last month by the Infectious Diseases Society of America; the lead author was Dr. Gary Wormser, chief of the division of infectious diseases at the hospital.

Protesters from as far away as California and Texas waved a sea of neon-green signs at passing cars at the intersection of Woods and Grasslands roads, some of which personally mocked the doctor with messages like, "Wormser lies ... Patients Die" and "Dr. Wormser - You Make Me Sick!" Others read, "Gross Medical Neglect," and "Stop the Ignorance."

Lyme disease, caused by the bite of a deer tick, can lead to an initial infection including a rash and muscle and joint pain; later it can result in arthritis and neurological symptoms. The new guidelines call for a bite to be treated with a single dose of preventative antibiotics, but say prolonged antibiotic treatment "has not proven to be useful." They also seek to differentiate between patients with "post-Lyme syndrome" and those with just the "aches and pains of daily living."

Patients and advocates yesterday said the study did not take their illnesses, or their efforts to find successful treatment, seriously enough.

"We are here today to fight back," declared Karen Gaudian of Ridgefield, Conn., who decried the new regulations as the result of organizations "corrupted by the quest for financial gain."

Pat Smith, president of the Lyme Disease Association, brought a clock that runs backward to illustrate a study she said was "taking us back in time."

"We cannot and will not allow the IDSA and their followers to take our disease away," she declared.

Protesters cheered Dr. Joseph Burrascano, vice president of the International Lyme and Associated Diseases Society, which supports the use of long-term antibiotics in some cases and has called on the IDSA to retract the recommendations.

"If they weren't so seriously flawed, I would say it was a joke," he said of the guidelines. He urged those at the rally to fight back "by uncovering the truth."

Doug Maass, 62, of Sleepy Hollow said he came to the rally because he was concerned he and thousands of other patients would lose insurance coverage or be cut off from treatment for chronic Lyme disease. He believes that he has had the disease since 1988, and that it is the cause of symptoms like his recurring left-side headaches and swollen glands; his wife, who is also ill, has symptoms that are even worse, he said.

"I've been on nine different antibiotics over six years," he said. "When I'm on antibiotics I feel pretty good. I go off for six or seven months, and the symptoms come back."

An attempt to reach Wormser for a response through a Westchester Medical Center spokeswoman was unsuccessful.

Reach Liz Anderson at ecanders@lohud.com or 914-696-8538.

[Rachel--24]

I wasnt able to participate in the rally but I'm trying to do my part....for myself and for everyone else who has Lyme Disease.

I'm hoping that anyone who reads this post will take a moment to sign this petition so that those of us with Lyme will have a much better chance at recovery.

The new restrictions that only allow for 21 days of antibiotic treatment went into effect in October of this year....this is the same time that I was getting diagnosed with this disease. It was struggle enough just trying to get a diagnosis and an answer after 4 years of illness.....and now this. I hope its not even more of a struggle to be able to get adequate treatment.

Please sign for the many people who have Lyme Disease...

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Thanks to everyone who takes the time to read and sign.

[CarlaB]

I signed it!!

[happygirl]

i signed it in honor of you ladies! xoxo