Massachusetts Doctors Fail Lyme Patients
Sick and tired of being ignored, misdiagnosed ...
If you are a dog in New England, you can be diagnosed with Lyme, treated fully until your symptoms leave, and it is really that simple. If you have acne, you might be on antibiotics for years -- no big deal and it has been going on for decades. But get Lyme disease and look in the mirror and notice you are a primate, and you are going to see the worst of "blow off" medicine. You will fight to the death with your insurance carrier for the best Lyme experts, the best tick disease labs and full antibiotic care. You would do better to rub tar on your face and create a patch of zits... Then you could get full antibiotics.
Dr. Charles Ray Jones, 76, who has been called the "Great Satan" by doctors with 1/40th his Lyme experience, has more than 7,000 pediatric Lyme cases from every state and country in the world, including 400 families from Massachusetts, he says. He believes the federal guidelines for Lyme disease are too rigid and finds the test favored by many doctors to be unreliable. His preferred treatment is to keep a child on antibiotics for at least two months after all symptoms have disappeared -- in extreme cases, this can mean years of treatment.
"Lyme is very, very complex," he says. ''It's a horrible disease to have, and it's a challenging disease to treat."
Many patients interviewed by the Globe say their insurance companies make
them pay large deductibles before out-of-network benefits kick in -- if they kick in at all. Blue Cross and Blue Shield of Massachusetts, for instance, provides full coverage for treatment of Lyme disease by network providers. But some people pay a higher rate for out-of-network coverage, while others have no such coverage.
'It's not a mystery'
Gesmundo says that once she found her way to ''Lyme literate" doctors, her family began to improve, bit by bit. She and her kids also see Dr. Bernard Raxlen in Stamford, Conn., a three-hour-plus drive from their house ... "Tell me why Boston and New York, two megacenters of medicine, have patients who come here to Connecticut to see me, a neuropsychiatrist in Stamford. I'm puzzled as to why Lyme continues to be such a controversy. You observe the patient, you treat the patient, the patient improves, you've done your job. It's not a mystery."
Raxlen ... notes "God forbid you [treat]... Lyme for even three months; you're ready to be tarred and feathered."
Gesmundo reckons she pays $2,000 a month in prescriptions, supplements, tests, and office visits for various doctors that her insurance will not cover. For their part, insurance companies say that the medical establishment does not agree on whether long-term treatment is warranted, or even safe.
[So insurance companies side with the "do not treat over 4 weeks" crowd and the insurance company keeps their money].
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By Bella English, Globe Staff (June 1, 2005)