posted
This is the editorial in today's Cape Cod Times. Rep. Shirley Gomes, who filed this legislation is a resident of Cape Cod.
I have not the energy to respond to this. Anyone else up for writing a letter in response? We sure would appreciate it. (they prefer letters from MA, but it's worth a try even if you are from another state, IMO)
May 8, 2006 Out of the woods Beacon Hill should stay out of the Lyme disease controversy.
The fact that tick-borne Lyme disease does not manifest the same in all patients, and has stages in which it doesn't reliably show up on tests, has led to a medical controversy.
Maybe stand-off would be a better term, since the two sides don't appear to talk to each other.
Some doctors - and particularly their large professional organizations - believe good treatment with antibiotics must be based on testing that shows the bacterium is actually present.
Others are convinced the Lyme spirochete hides for years and erupts later with multiple, devastating effects that only aggressive treatment with antibiotics or specialty intravenous mixes - many not covered by insurance - can cure.
Add a corps of organized Lyme sufferers - true believers who defend ''their'' doctors and their right to their diagnosis, and vilify any who disagree - and you have the makings of a nasty fight.
That fight has spilled into the Massachusetts Legislature (and those in other states) in the form of bills pushed by Lyme advocates seeking to define medical terms and appropriate treatments.
This is bad practice.
While they ask for more study and better training for doctors, and for permission for doctors to diagnose based on appearances in the examining room and on history provided by the patient instead of the recommended blood tests, the key sentence in the bill introduced by Rep. Shirley Gomes, R-Harwich, is probably this:
''The department shall perform a cost-benefit analysis on insurance coverage of long-term antibiotic care for Lyme disease patients.'' Long-term antibiotic treatment is defined as ''periods greater than four weeks,'' which is where standard practice cuts off.
Are some doctors chasing the money? That, too, may be undiagnosable. But because Lyme has enjoyed a recent upsurge of publicity (it was only described in 1975) and is something of a medical mystery, there is potential for fraud.
The Web site www. quackwatch.org documents some of this and describes the advocacy - some funded by the makers of infusion therapies - at work to get questionable and sometimes dangerous treatments paid.
For the dominant medical organizations, clinical trials have pretty much discounted the theory of widespread, chronic Lyme that requires expensive, long-term treatment. If new research changes that opinion, accepted practice should change, too.
But in no case should state legislators get involved in prescribing specific medical care.
[ 09. May 2006, 05:34 AM: Message edited by: nan ]
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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posted
You would have thought that a newspaper in an area with a lot of lyme cases would do a better job than this. It is usually the smaller papers who are less dogmatic. Wonder who got to them.
Posts: 8430 | From Not available | Registered: Oct 2000
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
"But in no case should state legislators get involved in prescribing specific medical care."
This is a true statement.
However, state legislators SHOULD look out for the welfare of the people who live in their state. This would include legislation for adequate insurance coverage for health issues (even ill defined health issues); and legislation to protect doctors who practice by either standard of care.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
For this nonsense to be printed in a Cape Cod newspaper--of all places! Cape Cod is one of THE endemic areas in the world! I think it may be where I got mine.
I'm having a bad day today. But in the next few days, if I'm feeling better, I will definitely get my thoughts together and write a response letter.
I live in MA, and like I said, I think I got it while vacationing at the Cape.
I couldn't help but think: Wait until the person writing the editorial(or their family member) gets Lyme. Then they'll see what it's all about. Posts: 366 | From MA | Registered: Apr 2006
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"For the dominant medical organizations, clinical trials have pretty much discounted the theory of widespread, chronic Lyme that requires expensive, long-term treatment. If new research changes that opinion, accepted practice should change, too."
Are they serious? Grrrrrrrrrrr.
Posts: 98 | From MA | Registered: Dec 2005
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Letters Editor, Cape Cod Times 319 Main St., Hyannis MA 02601 Letters may be faxed to: (508) 771-3292
Posts: 98 | From MA | Registered: Dec 2005
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posted
Here is a copy of my letter to Rep. Gomes if any lyme brains need a jumping off point:
Dear Representative Gomes,
I thank you and applaud your efforts in filing legislation to encourage the correct treatment of lyme disease and more specifically, chronic lyme disease. I was outraged to learn of the editorial piece today in the Cape Cod Times which speaks against very ill patients and the wonderful doctors who treat them.
I was bitten by a tick in Ipswich, MA in 1996, had a bulls eye rash and fortunately, positive blood work to support the diagnosis. Treated with only 10 days of antibiotics, I remained sick for the next 7 years and was diagnosed with MS, Fibromyalgia, Chronic Fatigue Syndrome, depression and whole host of other diseases. I began treatment with a specialist in CT in early 2004 to treat what turned out to be a neurological infection of lyme disease. Within only three months, my symptoms began to clear up and now, over 2 years later, I am 80% better on most days. The longstanding infection has left me with permanent damage to my eyes and joints but I am incredibly thankful to my doctor in CT: he saved my life (and the lives of thousands of other patients.) Now, at only 25 years of age, I have been sick for almost half of my life. I graduated from in 2004 and I am hoping to regain my health enough that I can apply to medical school. My experiences and my witness to the suffering of fellow lyme patients pushed aside by "conventional" medicine has been a tremendous calling to me. I have been left with huge medical bills because the treatments that saved my life (IV and oral antibiotics) were not viewed as "necessary".
Diagnosis has to be based on clinical symptoms as there are no reliable blood tests available at this time. http://www.ilads.org/basic.html provides some information about the 'myths' of lyme disease.
Although I reside in , MA now, please let me know if there is anything that I can do to help your fight for this. As a patient and as a human being, I believe that this legislation is absolutely essential. Again, I appreciate your efforts.
Warmly,
Obviously personal information has been edited out.
Posts: 98 | From MA | Registered: Dec 2005
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This letter really really got to me. Hope I can find the time to respond although I do not live in MA.
If the author is relying an quackwatch as some authority or unbiased source of medical info then they are obviously in serious need of a wake-up call.
Also, since when do legislators not get involved in medical care? What about medicaid and medicare etc etc -- Oridinary citizens sure aren't making the rules about what is and is not covered under these and other programs for the low-income or disadvantaged or elderly patients.
In almost every other disease a PCR test is the gold standard for testing. Yet many AMA physicians doubt hubby's diagnosis because the test has not been duplicated and it was performed by the "wrong lab".
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Well, bless your heart, Bluetick! Sure appreciate your spunk.
The editorial states-"clinical trials have pretty much discounted the theory of widespread, chronic Lyme that requires expensive, long-term treatment."
As one very astute gal points out; the clinical trials are those of Klempner, and we all know how very flawed those were. Wouldn't you think that medical professionals could see through those?
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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...this crappola really gets under my skin!
Everyone wants to follow "the science" when it comes to treating Lyme and do whats best for the patient. Based on a test with a pathetic acurracy! Do you think any of these Ducks would let their children, spouses, or other family members suffer? They only offer their opinion because they have not met many chronic Lyme patients and heard their stories. At least my LLMD puts her license, her time and her reputation to HELP patients. This is what MDs are suppose to be in the business for. Any useless human being can tell someone they have too much stress or just misdiagnose and give pain killers.
CaliLymer
Posts: 215 | From CA, USA | Registered: Nov 2004
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ralph
Unregistered
posted
To quote quackwatch as a source is major garbage. That doctor only attacks what he does not agree with, and he seems to have major disagreement with anything not set in stone or "alternative." He has been taken to court a number of times recently and has essentially been dismissed as one with no realistic knowledge of health concerns. He has repeatedly attacked chiropractors, and seems to be on a crusade there. I do have major attitude here, as I am a DC.
And to have a paper from the state that borders CT have such an unrealistic view of what is really going on seems very political and biased towards supporting the traditional medical profession and NOT those who suffer. It is sad as MA is often presented and viewed as such a liberal, compassionate state.
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