Ticked Off at the medical community Lyme-disease awareness group tries to put spotlight on chronic cases
By Taryn Plumb Globe Correspondent / September 13, 2009
``I can't throw a ball with my son,'' said Ed Quinlan, a 48-year-old from Westford who has been sick for more than two years. ``It gets harder and harder to walk every day.''
Just what ails them, though, is up for rancorous debate.
Quinlan and other members of Ticked Off, a support group based in Groton, say they are afflicted with a chronic or recurring form of Lyme disease, an illness caused by bacteria-carrying ticks. They want recognition of their ailment from the medical community, as well as easier access to what they call Lyme-literate doctors and the medications that they say have helped them. In their quest, they have gained the support of a Groton lawmaker who has filed a bill designed to protect physicians who treat patients for long-term Lyme disease.
But some major medical associations - including the National Institute of Allergy and Infectious Diseases, and the Infectious Diseases Society of America - are skeptical that such a severe and lingering manifestation of Lyme disease exists.
``There's no such thing as chronic Lyme disease,'' said Dr. Eugene Shapiro, a Lyme specialist at the Yale University School of Medicine.
The debate over Lyme disease has grown in recent years into a tempest involving residents of the tick-prone areas, lawmakers, advocacy groups, and medical organizations.
Sufferers, frustrated by what they feel are misdiagnoses of their symptoms, often travel out of state for treatment and to receive medications from doctors who specialize in Lyme disease. Some have also found refuge in organizations such as the MetroWest Lyme Support Group, the Greater Boston Lyme Support Group, and Sturbridge Lyme Awareness of Massachusetts.
Locally, they've also gotten the attention of state Representative Robert Hargraves, a Groton Republican who recently introduced a bill that would give Massachusetts doctors the freedom to treat chronic Lyme cases with longer courses of antibiotics without fear of disciplinary action. Currently, many doctors are reluctant to treat long-term Lyme symptoms beyond a standard, short course of antibiotics.
State Representative Theodore Speliotis, a Democrat from Danvers, put forth another bill that would require insurance companies to provide coverage for diagnostic testing and long-term antibiotic treatment when it's determined to be medically necessary and ordered by a physician after thorough evaluation.
Meanwhile, a national review panel recently examined treatment guidelines for Lyme disease published by the Infectious Diseases Society of America in 2006. A report due before January will determine whether to revise or rewrite those guidelines.
Area activists argue that many communities along Interstate 495 are especially vulnerable, due to the density of the area's woodlands and the large population of deer, since deer ticks are seen as the prime transmitters of the disease to humans.
``It's hitting here big - I'm talking serious illnesses,'' said Donna Castle, 57, a Groton resident who started Ticked Off in 2007 after her adult daughter was diagnosed with the disease. ``We call it the hidden epidemic.''
She says she knows of hundreds of people who are infected, and runs into more every day.
Classic indicators of a tick bite, such as a rash or a bull's-eye mark, aren't always evident in Lyme sufferers. And often, she contends, chronic Lyme is misdiagnosed as an array of other illnesses, or people are told ``it's all in your head.''
Dissenting doctors don't dispute that Lyme disease exists. The federal Centers for Disease Control and Prevention reports cases almost tripled between 1992 and 2007, from 10,000 to just under 28,000. The National Institutes of Health notes that untreated Lyme disease can lead to complications with joints, the heart, and the nervous system.
But, some doctors protest, there's no scientific evidence of a long-term manifestation.
The Infectious Diseases Society says that there's no convincing biologic evidence of a persisting form of the illness, and that 95 percent of Lyme disease cases are cured with a single course of antibiotics lasting 10 to 28 days.
This is where the International Lyme and Associated Diseases Society differs. The nonprofit association of physicians recommends earlier and longer courses of antibiotics, and repeat treatments when needed. Moreover, tests to detect Lyme are not always definitive, according to society president Daniel Cameron.
Yale professor Shapiro said that lengthy treatment with antibiotics can be dangerous, possibly leading to life-threatening infections and blood clots, and increasing the risk of fostering drug-resistant ``superbugs.''
Yet members of Ticked Off say long-term antibiotics have helped them recover.
Castle's daughter had several tick bites as a child and for 10 years experienced symptoms including muscle weakness, tremors, cognitive issues, and fatigue. After years of misdiagnosis, she was treated with long-term antibiotics and ``everything is under control,'' Castle said.
The support sessions held by Ticked Off attract 20 to 30 people each month, and Castle is also organizing a walk to raise awareness of Lyme disease.
In Ayer, town officials will hold a forum on Lyme disease Thursday to inform residents of the danger posed by ticks.
``To know that a tiny, tiny tick could cause this much damage is incomprehensible,'' Castle said. ``Something has to change. There's so much to do . . . The fight is never ending.''
Those who dispute chronic Lyme won't deny that people are in pain, but insist that tick-borne bacteria are not the culprits.
``Most of these patients are suffering,'' Shapiro said, but ``what these patients have are symptoms, not objective findings. The danger is that people are not being treated for their real problems.''
Posts: 571 | From Massachusetts | Registered: Oct 2008
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
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quote: ``Shapiro said, but ``what these patients have are symptoms, not objective findings.
And that is coming from the parties that use subjective questionnaires to deduce that they (patients with ongoing tbd infections) have mental problems.
Hey, Shap, if you are going to say that, I want OBJECTIVE findings, not subjective symptoms, of mental and emotional malfunction. Not some rating scales either. I want lab reports on emotional dysfunction!
quote:The danger is that people are not being treated for their real problems.''
I'll say...like chronic lyme and co-infections.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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quote: Shapiro said, but ``what these patients have are symptoms, not objective findings. The danger is that people are not being treated for their real problems.''
I love this example of hypocritical double speak. He makes an impression that they actually treat people's real problems! Its those bad bad llmds who misdiagnose and miss real problems!
They do absolutely nothing - prescribe psych meds or steroids, or even just tell you straight away that you are imagining things!
Posts: 856 | From MA | Registered: Jul 2009
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posted
They don't mention in the article how Donna's daughter was misdiagnosed with ALS before receiving the (correct) lyme dx.
I believe also that Ed (in photo with Donna) was misdiagnosed with the ALS death sentence before sleuthing out lyme as fitting his symptoms (I heard this through the family grapevine).
A major Boston hospital told him he had only months to live. Same hospital, I believe, that this year participated in a lyme/ALS study using faulty (lyme) testing as evidence of little correlation between lyme and ALS.
I mean, c'mon. Shapiro? why interview him without asking him what he sees the REAL etiology of these cases to be?
Posts: 571 | From Massachusetts | Registered: Oct 2008
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WildCondor
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Good grief!
Time for the truth to come out. Atleast Massachusetts is working on new law though.
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