posted
I thank Emily for her letter to the editor in today's Cape Cod Times. I am posting her great letter and also the editorial which appeared this week. Good job!
Lyme patient sold on long-term antibiotics I was outraged by your May 8 editorial, ''Out of the woods,'' which speaks against very ill patients and the wonderful doctors who treat them. I was bitten by a tick in Ipswich in 1996, had a bull's-eye rash and, fortunately, positive blood work to support the diagnosis. Treated with only 10 days of antibiotics, I remained sick for the next seven years and was diagnosed with multiple sclerosis, fibromyalgia, chronic fatigue syndrome, depression and whole host of other diseases.
I began treatment with a specialist in Connecticut in early 2004 with intravenous and oral antibiotics for what turned out to be a neurological infection of Lyme disease.
Within only three months, my symptoms began to clear up. More than two years later, I am 80 percent better on most days. I have permanent damage to my eyes and joints, but I am incredibly thankful to my Connecticut doctor, who saved my life.
Now, at age 25, I have been sick for almost half of my life. I hope to regain my health enough to attend 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. Emily McCarthy Arlington (Published: May 13, 2006)
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.
[ 13. May 2006, 04:22 PM: Message edited by: nan ]
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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You've done allot of good for others by sharing your story. There are allot of children on the Cape who need help.
Blessings and Healing,
Mo
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
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MagicAcorn
Frequent Contributor (1K+ posts)
Member # 8786
posted
Way to go Emily! Thanks for posting the letter and editorial.
Thanks Nan
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
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bettyg
Unregistered
posted
Thank you Emily for writing this rebuttal; and Nancy for posting it!
Go get em lymies; correct their misconceptions of lyme and long-term abx!
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