For those of us who have Lyme disease, the controversy concerning the use of long term antibiotics to treat us is very important. Here is another article that explains these current issues. Thanks to our friends at New Hampshire Public Radio and especially to Elaine Grant!
I hope everyone will get involved in their respective communities to voice their experiences with this issue.
Be well,
Richard
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Lyme Disease Controversy Comes to the Capitol
One of the most vitriolic debates in medicine has come to the State House.
Desperate Lyme Disease patients say they are fighting for their lives.
They say doctors who treat their illness with long-term antibiotics are persecuted by the medical establishment.
They want lawmakers to pass legislation that they say will free doctors to treat Lyme Disease as they see fit.
On the other side are doctors equally convinced that long-term antibiotics are both ineffective and dangerous.
NHPR health reporter Elaine Grant has more.
For years, patients suffering from a host of symptoms that they call chronic Lyme Disease have said they encounter difficulty getting treated appropriately.
With its so-called “bucket of symptoms” that mimic numerous other ailments, Lyme Disease can be tough to diagnose.
And for a variety of political reasons, it can be even harder to treat.
Consider the case of Cathy Kettman, a fifty-six year old mother of four from Bow.
Several years ago, she went to the hospital with chest pains – but tests showed no heart disease.
She developed numerous other symptoms, and for five years she searched for a diagnosis.
Cathy Kettman: They sent me to neurologists, endocrinologists, rheumatologists, they sent me to Dartmouth, they sent me back and forth for nine months to Brigham and Women’s looking for a tumor, they were trying to rule out MS and lupus.”
At one point, she was so crippled that her husband had to carry her to the bathroom.
When they asked her family doctor to test her for Lyme Disease, the doctor refused to treat her.
Finally, a doctor in Maine diagnosed her with chronic Lyme.
And that’s the first point of contention in the debate over how to treat these patients.
At issue in the scientific community is the question of whether or not long-term, or chronic, Lyme Disease actually exists.
The Infectious Disease Society of America is a group of 8,000 doctors that sets the generally accepted medical standards for about 50 infectious diseases.
The IDSA says there’s no such thing as chronic Lyme.
Here’s retired Concord doctor Susan Savateer representing the group, testifying before the House Health and Human Services Committee.
Dr. Susan Savateer: “As physicians, we have to be very careful not to give patients a diagnosis of LD unless they meet clinical criteria. Patients with chronic symptoms, mostly subjective, musculoskeletal pain, fatigue, memory deficits, these are common symptoms in our society.”
The Centers for Disease Control generally agrees with the IDSA.
And both groups say there is no benefit – and a great deal of potential harm -- to treating patients with antibiotics for longer than four weeks.
Dr. Paul Mead is an epidemiology chief at the CDC.
Dr. Paul Mead: “The National institutes of Health sponsored several studies to evaluate, well, do antibiotics make these people better? And the answer was, not more so than placebo.”
Furthermore, Mead says, both the antibiotics and long-term use of intravenous drugs can cause a number of serious illnesses and even death.
And doctors who subscribe to the IDSA position say over-diagnosing persistent Lyme can lead them to miss other serious illnesses.
Patients could not disagree more vehemently.
The International Lyme and Associated Diseases Society directly opposes the IDSA.
ILADS says science shows that chronic Lyme is real and that long-term therapy can help.
But advocates say that, in the medical world, IDSA reigns supreme –and that causes doctors to fear following alternative guidelines.
They point to situations like that encountered by Kevin Young, a primary care physician in Plymouth.
Years ago, Young’s daughter came down with a mysterious illness.
She suffered from a variety of neurological problems including intermittent blindness, seizures, and cognitive problems.
Dr. Kevin Young: Over the next two years, she went from being honors English in high school to being unable to comprehend a newspaper article.”
Young sought help from specialists.
Dr. Kevin Young: “No one could explain her problem. During that time, I did follow IDSA guidelines. It was a scary time.”
Finally he gave his daughter antibiotics – for nine and a half years.
Today, he says she’s well.
But his treatment choice came at a professional price.
Dr. Kevin Young: A neurologist who saw my daughter not only questioned my medical judgment, but also threatened to report me for child abuse. He said due to our professional relationship over many years, he would not do that, but that does dramatize the conflict within the medical community.”
The conflict has become so nasty over the last two decades, advocates say, that doctors in many states, including New Hampshire, are afraid to treat Lyme patients.
Representative Gary Daniels: “This has had a chilling effect on the number of Lyme literate physicans who are trained or willing to treat Lyme patients…Many of our state residents are forced to travel beyond our state borders to find the treatment that they need.”
That’s State Representative Gary Daniels, a Republican from Milford.
He says doctors in other states have been prosecuted by medical boards for prescribing long-term antibiotics.
And although it’s never happened in New Hampshire, Daniels wants to make sure it won’t.
He’s sponsored a bill to protect doctors from prosecution by the Board of Medicine should they choose long-term treatment.
The New Hampshire Medical Society opposes the bill, saying physicians are already free to treat as they wish.
Lawmakers also question whether any other illness has received exemptions from medical oversight.
In response, advocates say the scientific community views Lyme differently.
And that has broader implications.
Pat Smith is president of the Lyme Disease Association.
Pat Smith: “We actually have cases where insurers have not paid for medical treatments due to the IDSA guidelines. We have cases where pharmacies have stopped giving patients their medicines because of the IDSA standards.”
Further complicating an already thorny issue is the question of the IDSA’s integrity.
Last year, Connecticut Attorney General Richard Blumenthal settled an anti-trust case against the IDSA.
According to court documents, the IDSA Lyme review panel was found to have conflicts of interest, including ties to drug and insurance companies.
The IDSA is reviewing its guidelines, but no major changes are expected.
Legislation virtually identical to New Hampshire’s passed unanimously in Connecticut last year.
Similar bills are pending in Massachusetts, Minnesota, and Virginia.
With 92 cases per 100,000 people, New Hampshire has the highest reported incidence of Lyme Disease in the country.
For NHPR News, I’m Elaine Grant.
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