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Hidden Epidemic? Divide over chronic Lyme disease
By Barbara Morse Silva Health Check 10 Reporter
Published: July 28, 2009
It is becoming one of the most controversial illnesses in the history of medicine: chronic Lyme disease.
Those who treat the disease will tell you it's real and life-threatening. Those who believe the chronic illness does not exist will dismiss it as something else.
Two very different schools of thought leave patients caught in the middle.
The last time Matt Rolin felt really good he was 11. He was into theater, even playing the lead in ``Oliver.``
It was nine years ago during that production that he started feeling sick.
``I remember, like, just started in school, getting harder to concentrate,`` Rolin said.
That was just the beginning.
``I was just falling down, couldn't balance, throwing up, lots and lots of pain. It was just terrible,`` he said.
Rolin spent most days in bed. He went to see doctor after doctor, who told him he was making it up or that he had fibromyalgia.
``They just didn't have any answers,`` Rolin said.
Stephanie Stabile remembers three years ago, when she was 13.
``I'd be shaking a little bit with tremors and be, `Oh, OK. Whatever.` And then it got to the point where I couldn't get out of bed,`` Stabile said.
She began to have severe pain in her hip and in her back.
Doctors, at first, thought it was her juvenile rheumatoid arthritis flaring up. But as the days and weeks went by, her mother suspected it was something more
``When she began with chronic fatigue, she was sleeping, this was a girl who would never want to go to bed. She just, you know, burned the candles on both ends,`` Loren Stabile said.
``And then she started with neurological symptoms. She would get the tremors. She would go from hot to cold, and she'd fall out of her bed.``
Stabile was tested for multiple sclerosis, chronic fatigue, and a thyroid condition.
That was until they went to see Dr. Charles Ray Jones, a pediatrician in New Haven, Conn.
At 80 and barely able to walk, Jones said he works seven days a week. Over the years, he's seen 15,000 children with one thing in common: Lyme disease.
Given the need and the demand, Jones said retirement is not an option.
``Right now, I'm the only pediatrician in the whole world who has an awareness of Lyme and tick-borne diseases,`` Jones said.
Jones said more of his patients than not have chronic Lyme disease. Rolin and Stabile are among them.
``Some are very, very much impaired,`` Jones said.
Rolin had to be carried into Jones's office. At that point, Rolin said he had little hope and thought he would probably die if he didn't get help.
``Because we didn't know what was wrong and it just kept getting worse,`` Rolin said.
Jones diagnosed Rolin, not only with Lyme disease, but with other tick-borne infections and immediately put him on antibiotics.
Rolin is now 20 and continues to take antibiotics.
It took a while, but he is no longer bed-ridden and he is able to do things he couldn't do for years--like run up and down the stairs. And only recently did he start playing the piano again.
``I'm a believer because I watched my son suffer for so long. If it wasn't for Dr. Charles Ray Jones I know that he would have died,`` said Julie Merolla, Rolin's mother.
But not everyone--in particular, the medical community at large--agrees.
``At Yale, I'm known as the great Satan ... Because I'm evil, bad, and treat kids in the wrong way,`` Jones said. ``I'm known as the great saint by the people.``
Heralded by his many patients, villainized, he says, by his peers. That's because according to the guidelines issued by the Infectious Diseases Society of America, there is no scientific evidence backing a diagnosis of chronic Lyme disease.
Dr. Nitin Damle is an internal medicine doctor in Lyme-endemic South County who follows those guidelines.
So, what about people who become chronically ill after a Lyme diagnosis?
``I think that there is in a very small percentage of people a syndrome called post-Lyme syndrome in which they have inflammatory responses, their body has inflammatory responses.
Most of those are self-limiting and go away with time and anti-inflammatories and other types of medication,`` Damle said.
But what if they don't improve?
``I think you need to continuously look at why they're not getting better,`` Damle said.
And that's what's spelled out in the IDSA guidelines. If these patients don't improve, it's one of four things:
They never had Lyme disease.
They had Lyme disease and another infection simultaneously and were only treated for Lyme.
They contracted a new illness unrelated to Lyme disease but with similar symptoms.
They have again been bitten by the tick that causes Lyme disease.
``Anyone who deals with Lyme disease ... would have to realize that Lyme disease can be an acute, easy-to-treat infection or go on to be a chronic difficult-to-treat disorder,`` Jones said.
My special report continues Wednesday on NBC 10 News at 5 p.m.*********************************************
Learn how an investigation revealed flaws in the Lyme disease guideline process, including possible conflicts of interest. And find out why lawmakers are getting involved. **********************************************
Related Links:
Infectious Diseases Society of America: Lyme Disease Centers for Disease Control and Prevention: Lyme Disease New England Journal of Medicine: A Critical Appraisal of ``Chronic Lyme Disease'' Rhode Island Department of Health: The Chronic Lyme Debate Time For Lyme
�2009 Media General Communications Holdings, LLC
Reader Reactions **********************
Posted by ( krssy215 ) on July 28, 2009 at 7:38 pm
In response to Jenny, I've heard that there is a clinic at RI Hospital, I've also heard that its a pretty long wait, but its much closer than driving to Boston or Falmouth.
I've been battling Lyme for 6 years. My first Lyme rash occurred when I was 16 yrs old. The pediatrician didn't know what it was.
I was constantly tired, they tested me for mono, epstein-barr, etc...I wasn't diagnosed with Lyme until I was 29 and woke up with Bells Palsy. Luckily at that time I was also CDC positive for Lyme.
All in all, its been close to 19 years now.
I've been bit, re-bit and some days there doesn't seem to be an end in sight! I was on antibiotics for 3 years after my BP, was finally feeling better, was antibiotic free for two years only to be bit again and contract Bells Palsy to the other side of my face!
Last week, I found a tick on my foot after walking across the front lawn...I live in the city, sometimes I feel like no place is safe.
Thanks for bringing this topic to the masses and thanks to law makers in RI for passing some of the only legislation that mandates insurance companies to cover our treatments.
*******************************
Posted by ( jenny vidos ) on July 28, 2009 at 6:06 pm
I had lyme disease for years before anybody figured out what was wrong with me.
I was treated by Dr.Donta in MA for 2 years but am unable to make the drive there for further treatment.
I still feel awful most of the time. I already had long term antibiotic treatment that caused other medical problems. The problem is where do I go from here... I still feel sick but have finished treatment.
My family doctor thinks I have fibro and/or chronic fatigue.
I want my life back.. or at least to be able to stay awake.
We need better testing and treatment for this disease. Everybody can debate if chronic lyme disease is real but somebody ( the CDC ???) needs to do something about it. *******************
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They teased this segment all week without saying the name of the disease. Of course I had already guessed it!
We are an "endemic area" with NO doctors, just ducks like that one they interviewed that is actually from the area in RI that Lyme is most prevalent.
I am another patient that travels 2.5 hours each way for a physician's help. Do I sound bitter?
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