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Donna Zuehl

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Re: New Site for Fibromyalgia - Information and Resources
8/28/2007 12:21:13 AM
Thanks Lisa. Keep on trucking! Hopefully by posting in my forum more people will see your information and pass the word. DonnaZ
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Re: New Site for Fibromyalgia - Information and Resources
8/29/2007 12:10:07 AM

Hello Donna and Friends

   As we have discussed before, there are many, similar symptoms when it comes to fibromyalgia, lyme desease, toxic mold illness and many other conditions and illnesses. In my research I have found that Fibromyalgia is a catch all diagnosis. Part of the reason for this is that insurance companies just refuse to pay for chronic illnesses even thyough there are treatments available. People do get better when they get treatment. Not in all cases but certainly in many cases.

   Do to the similarites of symptoms of so many illnesses, I continue to research all of them. Here is an article I just found about lyme desease in New York. Does this scenario sound familiar or what?

Denis Hamill


Ticked off, pol's taking action



Nettie Mayersohn

Nettie Mayersohn


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Queens chick fixed tick glitch for hicks in sticks.

Still, I didn't go to "the country" on my summer vacation. I stayed right here in Queens.

I won't go anywhere near where the deer and the antibiotics roam.

Because where there is Bambi, there is a little monster called a Lyme tick.

According to Assemblywoman Nettie Mayersohn (D-Flushing) - who co-authored a 2005 State Assembly bill that demanded HMOs and the State Office of Professional Medical Conduct stop harassing doctors who treat Lyme disease as a chronic illness - New York State has the highest number of Lyme disease cases in the nation.

So if I have to spend the rest of my life dodging killer traffic on Queens Blvd. as opposed to frolicking in the deer-dotted meadows of "the country," I will consider myself one lucky city slicker.

See, I have a niece who has chronic Lyme disease. Cara was bitten by a dirty little deer tick in Rhinebeck, N.Y., when she was 7.

She's 26 now and the last two decades of her life have been a living hell of pain and suffering, mega doses of antibiotics, wars with bloodless HMOs, alternative medicine treatments, lethargy, scary weight fluctuations from drug bloating and loss of appetite, and an almost spiritual quest for lasting relief.

"It took us six years to get Cara diagnosed," says Betsy Jacaruso, Cara's mother, a well-known Hudson Valley painter who also is a chronic Lyme sufferer. "Some doctors don't even believe in chronic Lyme disease because it doesn't always show up positive in a blood test because when Lyme mutates, it can change structure into cyst forms and hide deep in the immune cells. But simple stress can make it flare."

As a child, Cara's chronic Lyme disease often forced her to leave school mid-term. This incurable disease also has affected her adult working life, as some days she is simply unable to get out of bed because the infection caused by the spiral-shaped bacteria called spirochetes causes severe headaches, fatigue, pain, insomnia, nausea, general malaise.

Chronic Lyme disease can leave some people completely disabled.

And, of course, instead of trying to help these victims through a life of despair, the HMOs, those towering institutions dedicated to bottomless greed, have spent millions on lobbyists and lawyers who pressured the New York State Office of Professional Medical Conduct to harass doctors who treat Lyme disease as a chronic illness.

"I represent Flushing, where we don't have a huge Lyme problem," says Mayersohn, a member of the Assembly health committee. "But I had an intern who went off to graduate school and the work world; then I received a very disturbing letter from her saying she'd developed chronic Lyme disease."

Mayersohn says the disease had attacked the young woman's central nervous system, her ability to think clearly and her memory. "She had deteriorated from a beautiful, bright young woman with her whole life in front of her to a point where she could not function," says Mayersohn. "She also told me about the whole debate about Lyme disease and how it was affecting her ability to find a doctor to treat the disease."

So this city slicker state rep took her Queens street smarts and looked into the upstate Lyme situation and found that the Office of Professional Medical Conduct was targeting those doctors who treated chronic Lyme victims with prolonged antibiotic treatments.

"One 27-year-old woman, named Lia, was so afflicted that she was wheelchair-bound," says Mayersohn. "They wanted to put her into a nursing home. But once she received long-term antibiotic treatments, she was able to get out of the wheelchair. Today she rides a bicycle because, obviously, prolonged antibiotic treatments work. But the insurance companies didn't want to pay the costs so they brought pressure on the OPMC and one doctor actually lost his license."

So the outraged gentlewoman from Queens co-authored her legislation which passed the state Assembly and the state Senate. Gov. Pataki, dedicated to protect and serve the insurance companies, vetoed it.

"But he did have the state Department of Health send out a June 15, 2005, memo demanding that the harassment of Lyme doctors cease," says Mayersohn. "It did. Still, that one doctor never got his license back."

Mayersohn says if the harassment of Lyme doctors begins anew, she'd consider drafting new legislation for Spitzer's consideration. Amazing that it takes a legislator from Queens to spearhead change to a raging upstate health problem.

"But it's no different than my legislation on AIDS and stroke victims," says Mayersohn. "I'm not a doctor but I have common sense. If a woman suffering from chronic Lyme disease can go from a wheelchair to a bicycle on prolonged antibiotic treatment, it must mean it works."

But it still won't get me to leave Queens for tick country.

Baby Kaleb, we send you our love,our prayers and our healing light. 
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May a smile follow you to sleep each night,,,,,,,,,,,,,,,,,,,,,,,,,,,,,
           and be there waiting,,, when you awaken.
 
Sincerly, Bill Vanderbilt
 
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May a smile follow you to sleep each night and,,,,,be there waiting,,,,,when you awaken http://community.adlandpro.com/forums/8212/ShowForum.aspx Sincerely, Billdaddy
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Donna Zuehl

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Re: New Site for Fibromyalgia - Information and Resources
8/29/2007 12:19:28 AM
Thanks for sharing this interesting article with us, Bill. It is sad that so many people have to suffer the effects of Lyme disease. It is incomprehensible that doctors aren't doing more to learn about Lyme disease and treat their patients appropriately. DonnaZ
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Re: New Site for Fibromyalgia - Information and Resources
8/29/2007 1:55:54 AM

Hello Donna

   Yes it is a sad situation. People are getting sick from different things every day and no one is helping them get better. Not because there isn't information available either. A big part of the problem is that Insurance companies have way too much controll over the health industry and the government. A lot of the research that is made available to us is funded by insurance companies and outside research groups that will pump out whatever hogwash the insurance comanies want us to hear.

   I first learned of this in my Autism advocacy work. Autism is not the mystery illness that they claim it is. MOST OF THE CAUSES ARE VERY WELL KNOWN AND DOCUMENTED. the cure lies in prevention not treatment. there is a lot of money in research and treatment. Much more than is in curing illness. If they actuall cured us of everything they could, we wouldn't need the research and treatment anymore.

   Lyme desease is real and very common. Toxic mold illness is also real and much more common than lyme desease. Both are well understood but very expensive to treat. Insurance companies do not like cures and neither does Big Pharma.

Sincerely, Bill

  

May a smile follow you to sleep each night and,,,,,be there waiting,,,,,when you awaken http://community.adlandpro.com/forums/8212/ShowForum.aspx Sincerely, Billdaddy
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Donna Zuehl

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Re: New Site for Fibromyalgia - Information and Resources
8/30/2007 12:04:31 AM
Hi Bill, As an example of what you were just relating to our forum members, I have had a very sore foot for 19 days. I went to a walk-in clinic a week or so ago. After having an x-ray and blood work it was determined that the problem might be gout. My uric acid level was elevated. Anyway, that doctor recommended follow-up by my primary care physician to see what could be done as preventative medicine. Unfortunately, my doctor had no openings until October, but her co-worker had an opening today. I talked to her about my foot and told her I had read that two of my medications can exacerbate gout. She said "mention it to your doctor the next time you see her". She did not give me any dietary recommendations. She did say I should drink plenty of fluids to help the uric acid get excreted. She gave me a prescription for a medication that is used for gout attacks. However, after doing my own research prior to my doctor appt., I knew that the meds have a side-effect of nausea and diarrhea. I informed her that I have IBS with predominantly diarrhea and didn't want anything that might make it worse. She said "it is recommended that people take it until you get a stomach upset or diarrhea. If you have a problem with it, then we can try something else at that time." I felt like she was rushing me out of the office. I was very disappointed with my visit and felt it was a waste of my $20 co-payment. It seems that doctors are in such a hurry, they cannot give you adequate care. They just want to prescribe a pill, then get you out of the office. DonnaZ
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