Trish McLeary's Sturbridge home is surrounded by green ribbons.
They are part of her crusade to raise awareness about Lyme disease; a tick-borne illness that she says nearly killed her.
"In June of '06, I woke up and within hours I was completely paralyzed," she said. "I couldn't walk. I couldn't talk. Couldn't feel, move or speak."
McLeary doesn't recall a tick bite, or a tell-tale bulls-eye rash, so she was not thinking Lyme. And neither were the emergency room doctors.
"We went from hospital to hospital being told, 'We don't know what to do with you,'" she recalled.
Several doctors suggested it was all in her head.
ANOTHER CASE
Donna Castle of Ayer faced similar confusion when her daughter got sick.
The news she got from doctors was even more horrifying.
"She saw three doctors. The third one diagnosed her with ALS," said Castle.
Doctors told Castle that her daughter would be in a wheelchair in three months, and dead within a year.
NEW DIAGNOSIS
After seeing dozens of doctors, both McLeary and Castle's daughter, who did not want us to use her name, were diagnosed with chronic Lyme disease.
They were given months of IV antibiotics.
"I could see I was getting my life back," said McLeary.
"She was walking up stairs better, talking, less confused," Castle remembered. "It was like a miracle."
SEEKING TREATMENT
Boston has some of the best doctors in the country, but long-term antibiotic therapy is so controversial both families had to go out of state to find a doctor to prescribe it.
That is because the treatment is not recommended by the Infectious Disease Society of America.
Doctors from that agency don't believe the treatment works.
"The concept that Lyme disease germs can be lurking in one's body open endedly... just hasn't been resonating," said Dr. Mark Pasternack, an infectious disease specialist at Massachusetts General Hospital who supports the IDSA position.
RISK OF SIDE EFFECTS
The IDSA is also concerned because of the risk associated with lengthy courses of antibiotics.
IV sites can become infected, and there is concern that the patient would develop a resistance to the drugs.
Then, if they come down with bronchitis or a kidney infection, it could become difficult to treat.
That's why the IDSA guidelines call for just 30 days of treatment.
Doctors who prescribe outside those guidelines could be cited by the state medical board.
NOT GIVING UP
Trish McLeary insists doctors know what's best for their patients.
"Cancer doctors treat cancer, and they treat it how they need to for as long as they need to. Lyme doctors should be left to do the same," she said.
Several other states do offer protections for doctors.
Physicians in Connecticut, Rhode Island, New York, and New Jersey are all protected from any kind of sanctions from their medical boards.
WORKING WITH LAWMAKERS
Massachusetts lawmakers are rewriting a similar bill here.
Dr. Daniel Cameron is a Lyme specialist from New York who treats dozens of Massachusetts patients.
"Getting a bill like this offers doctors more of a comfort that they can practice without having the state looking over their shoulder," he said.
But Dr. Pasternack is one of the many doctors urging lawmakers not to pass it.
"Passing laws regarding the practice of medicine is kind of just a bad concept," he said.
FOR HER KIDS
Trish McLeary believes this controversial treatment is the only reason she is alive today, and she wants to make sure it is available to her teenage sons who both tested positive for Lyme.
"The Lyme community is just getting too big," she said.
Cost of treatment is another big issue.
Insurance does not cover the cost of treatment so McLeary and Castle had to pay thousands out of their pockets.
The IDSA believes that's just another reason why doctors shouldn't be prescribing it.
The International Lyme Disease Association is the organization that supports the use of long-term antibiotics.
Posts: 571 | From Massachusetts | Registered: Oct 2008
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-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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RDaywillcome
Frequent Contributor (1K+ posts)
Member # 21454
posted
Great Job! Thank you.
Posts: 1738 | From over the rainbow | Registered: Jul 2009
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posted
You have to realize that Boston is IDSA/Steere-Central. and MDs here are scared b/c their licenses are under threat.
My LLMD who followed Dr. H's protocol was forced to stop treating lyme last year. Her practice lasted all of 8 months or so before she came under scrutiny.
the type of treatment that patients with advanced cases need (IV or IV more that 4 wks) is not within reach.
Unfortunately, this is a disease for the rich or for those who have assets or a credit to draw on. It's the same everywhere. But to me it's almost worse, because it's considered to be Highly Endemic historically.
Our schools and universities have programs where they test ticks outside MA (i.e. NH) but they're not monitored here in the same way. It makes no sense.
Meanwhile, I live in the city and have ticks in the shrubbery lining the concrete sidewalk that infected me.
makes absolutely no sense.
Posts: 571 | From Massachusetts | Registered: Oct 2008
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