Posted on 05/02/2008 4:35:28 PM PDT by decimon
HARTFORD, Conn. - Patients who believe they suffer long-term problems from Lyme disease are claiming victory over a national doctors group. The Infectious Diseases Society of America has agreed to review its guidelines, which say there's no evidence long-term antibiotics can cure "chronic Lyme" disease — or even that such a condition exists.
The agreement settles an unprecedented antitrust investigation by Connecticut's attorney general over the matter. The doctors group makes clear that current guidance for treating Lyme disease remains in place.
But that didn't stop claims of success by the attorney general and people who believe they suffer long-term effects of the tick-borne disease.
"It's a great victory for patients," said Pat Smith, president of the Lyme Disease Association, a national nonprofit group based in New Jersey. "It's time that Lyme patients got the respect they deserve."
The agreement, announced Thursday, calls for the doctors group to form a new panel of experts to review standards for treating Lyme disease. The Infectious Diseases Society says it agreed to the deal in part because the panel must be made up of doctors and scientists.
Lyme disease can be hard to diagnose with its vague, flu-like symptoms; the most obvious sign is its trademark round red rash. Usually, it's easily cured with a few weeks of antibiotics. Those not promptly treated can develop arthritis, meningitis and other serious illnesses.
About 20,000 new cases of Lyme disease are reported every year, but experts believe the annual total may be five times higher.
Connecticut leads the nation in reported cases and has been a battleground in the national debate over treatment. Lyme disease is named after the Connecticut town of Lyme, where the illness was first discovered in 1975. And the state is home to a number of people who claim they suffer long-term problems from Lyme disease — problems that many doctors are unable to confirm or treat.
The Infectious Diseases Society says it's never been proven whether these patients still have Lyme disease or something else. The group continues to defend its standards, which say short-term antibiotics are effective for nearly all patients. Long-term antibiotics are unproven and potentially dangerous, because overuse of the drugs can lead to drug-resistant infections, the society says.
"We are confident that our guidelines for the diagnosis and treatment of Lyme disease represent the best advice that medicine currently has to offer ... and we look forward to the opportunity to put to rest any questions about them," said Dr. Donald Poretz, the society's president.
The society will consider a variety of scientific evidence and determine whether the 2006 guidelines are justified or need revision.
The guidelines are important because they discourage adequate treatment, advocates of chronic Lyme sufferers say. Perhaps just as significant is that insurance companies refuse to pay for long-term antibiotics to treat chronic Lyme.
"We are delighted with this settlement," said Diane Blanchard of Greenwich, who said she was sick with Lyme disease for 10 years before a long-term antibiotic treatment relieved her symptoms in the late 1990s.
"The IDSA guidelines are now clouded by this decision. My greatest hope is that patients will regain their right to treatment," said Blanchard, now co-president of the advocacy group Time for Lyme.
Philadelphia-based health insurer Cigna Corp. said it is reviewing the agreement to see if any changes in policies are needed. Cigna covers up to 28 days of intravenous antibiotic therapy for Lyme disease and, like many insurers, cites the Infectious Diseases Society's guidelines in its coverage plan.
Cigna does not pay for "repeated or prolonged" courses of antibiotics, saying they are "experimental, investigational or unproven."
Connecticut Attorney General Richard Blumenthal and advocates say the agreement is the first time the medical establishment has bowed to the pressure of a potential court fight and agreed to re-evaluate care standards.
"My main goal all along has been a process that is fair, open and free of conflicts of interest," Blumenthal said.
Blumenthal said his investigation found that some of the 14 experts who approved the 2006 guidelines got consulting fees, research grants and stock ownership from drug companies and other businesses that have a stake in the treatment and diagnosis of Lyme disease.
He would not name the panel members or the companies. He said the backgrounds of the new experts looking at the guidelines will be checked for any potential conflicts.
The issue involves antitrust law, Blumenthal said, because the panel excluded some opinions and evidence that may have supported other treatments in development, including vaccines.
Blumenthal's office did not take a position on the proper treatment of the disease or whether chronic Lyme disease exists.
The Infectious Diseases Society denied any conflict of interest.
"Panel members do not stand to profit from any recommendation in the guidelines," the group said in statement. "In fact, the panel members denied themselves and their colleagues an opportunity to generate a significant amount of revenue when they recommended against expensive, repeated, long-term antibiotic therapy."
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On the Web:
Centers for Disease Control and Prevention: http://www.cdc.gov/ncidod/dvbid/lyme/
Infectious Diseases Society of America: http://www.idsociety.org/
Lyme Disease Association: http://www.lymediseaseassociation.org/
What about the Western Blot test? It isn't much better than ELISA, but the approach is different some how...
“Is chronic lime disease another imagined or wrongly attributed aliment?”
I’ve watched a healthy woman waste away over the past 5 yrs. with this condition.
So my guess is that it is very real - and part of the suffering is when people suggest to them that it is all in their head.
>>Does an antibiotic regimen give you relief?
Lyme wasn’t evident so I was never given a anti-b treatment.
My friends were both given tetracycline but continue to have occasional relapses of joint pain, stiffness and even vertigo.
The one thing I do get that they don’t is a L’hermitt’e sign (electric-like zaps down the spine and legs when the head bends forward) I’m told this happens sometimes in MS, during exacerbations, kind of like stretching a frayed extention cord (gulp). They do not get that symptom at all.
Right now I take Neurontin to offset the occasional tingles. I’m in line to start Rebif or Avonex injections (beta interferon)
I’m fortunate that I’ve had little or no progression, but I’d like to start the shots before I do.. weighing the cons (side effects) against that big (possible, not promised) pro is hard though.
I should add - the people who I know have been treated for Lyme disease — I’d say only one in five ever get the infamous “red bullseye”.
Push for it- I was 3 years in such dire pain that I ground my teeth down 25% of their length, and till every filling in my mouth fell out. By chance I was given a big dose of antibiotic. It just about killed me the first four days (hospitalized and everything), but the fourth day I woke up FINE for the first time in forever.
That's when the MS diagnosis went away, and they started looking for meningitis, and started me on huge doses of Doxycycline. That helped a lot, though I relapsed somewhat and didn't improve for 6 months. Then switched over to 1000mg of amoxycilin / day which did better than anything else. Now I am going about a year between treatments, switching back and forth between doxy and amox and have recovered greatly, though not perfectly by any means.
The one thing I do get that they don’t is a L’hermitt’e sign (electric-like zaps down the spine and legs when the head bends forward)
I have had that, though I cannot recall head forward specifically. I also get them even yet, knee to toes, and to include from elbow to fingertip too... That was one of the reasons they were looking for meningitis too, afair...
I got the red bullseye twice in my life- both before I was 30 yrs old. They were basically ignored, because Lyme isn't supposed to be in MT.
I healed fine and never got sick from the bite afair, but a sun-stroke incident set the whole thing off for me when I was about 40 yrs. Went from perfectly active to a POS in 2 weeks time. I am 47 now.
Second, any time you relapse high-dosage tet 500 mg four times a day.
I had a tick bite 14 years ago, low dose docy treatment for two weeks. In the following years, the weirdest random and roaming physical ailments: stomache, kidneys, a sense of "brain fog". Whew
Three years later, a walk in the woods, and gee in two weeks can't move my jaw, can't move my neck, can't move my side of my face! Uh Oh, a 104. fever and a headache so bad I can't see, for two days.
Local hospital says it's nothing
I go to another hospital further away where my dad knows an internist. The Internist has the neurologist do a spinal on me! Ouch.
They don't know what to make of me and stick me in intensive care, nobody comes in but the orderly, and I am on a potassium drip. A bedpan sits in the corner one whole day
Finally my internist agrees with my plea for a lyme titre.
The fever finally breaks, and they decide I can go home.
When I get home they call and say you have LYME!
One day later the bullseye shows up; it is a big huge thing on my tummy!
I research Dr. Burrascano! (a wonder, look him up)
I get put on a two month course of Rocephin IV
I get better, then much worse
I can't walk up the stairs w/o pulling myself up, the arthritis is so bad
I call a doc on the Cape (cod) who is known and he personally takes my call. He says you must have 500 mgs tetracycline for two to four months four times a day.
I tell my doc, who is very skeptical, but he complies.
I get so sick from the tetra
Then, I GET BETTER! I can walk, I don't have brain fog, the arthritis completely goes away
After that, every Spring for six years, I relapse. I know I need the tetra.
The insurance companies are giving the docs are hard time. My doc doesn't like to give the tetra, so I go til I can't stand it anymore. Then I beg and he gives me a three week dosage and I pulse: meaning I take high dosage four times a day for three weeks. I always get better!
Eventually, I don't relapse any more! Yay! I seem to stabalize, eat healthy, excercise, vitamins.
I swear, Tetracyline saved my life!
google Burrascano and good luck to all! I have never completely regained the ability to turn my head either left or right, and my handwriting took a hit, but otherwise, I am so much better! Good luck! V's wife.
can’t do dox, amox. Crappy subs; must!!! do tetra, except no substitutes except penacilin! V’s wife.
I can't do tet. It is really hard on me. As long as I can do well on dox and amox, I will stay there... different strokes I guess :D
They don’t use antibiotics for MS. They do use antibiotics for Lyme. Lyme patients usually get relief w/antibiotics, sometimes IV antibiotics, but sometimes they get worse before they get better (I think it’s called Herxheimer reaction.)
For MS there are disease modifying drugs that can slow the progression of the disease. Interferons, and a few others are used. For symptoms, I use specific meds for specific symptoms. An anti-spasticity med for spasticity, etc.
No she wasn’t. She had vague symptoms for years, and finally somebody ran a few Lyme tests (I think there is more than one, and hers all came up positive.)
It is really hard, it was on me, too. Ugh, like chemo. But, if you really want to get well, it is a way to consider. V’s wife.
Had the herx with the Rocephin, but for herx, you have to still be on the meds. Had the herx with tetra, but got so much better. So sick with the herx...but persevered. V’s wife
I didn’t know that about L’hermittes, interesting. I have it too, usually just during an exacerbation.
I’ve never had fevers, or joint problems, no real pain, just spasticity, so I think they ruled out Lyme pretty early (plus I had the tests...can’t remember which ones.)
I take Betaseron, have for quite a few years. Absolutely no side effects, so I’m fortunate. And I think it’s helping, my MRI looks better today than when I was diagnosed, although I still have residual symptoms from the bad exacerbation that led to my diagnosis. Nothing awful, spasticity, foot drop and sounding like a drunk are my most consistent problems.
I’ll take you up on the PM sometime.
Yes, I know. My high dose antibiotic was coincidental for the treatment of an infection. At the time I was diagnosed as MS, with small lesions visible on the brain in MRI. But my reaction to the antibiotic was profound.
I herx worse than most, as I am a big guy and when the little buggers start dying I get severely toxic. I have to go to the hospital for three or four days just in case I tip over.
Anyway, after that first round of antibiotics, and the ensuing herx, I got significantly better. When they started treating for meningitis-like symptoms, the big doses of doxy helped alot, and the lesions went away too, so MS was ruled out at that point.
For MS there are disease modifying drugs that can slow the progression of the disease.
Yes, I am quite familiar, having become informed while I thought MS was my own problem. If I had not been treated for the incidental infection, I would have begun interferon treatment within a week or two.
I am quite sympathetic to your plight. I had met others with MS, and it is amazing how close the symptoms are between MS/Lyme/Fibro.
It SUCKS. BAD.
So, Has anybody here ever have Lyme disease and do my symptoms match?
Thanks. The balls of my feet feel like theres a small electric current running up through the carpet as I type. Ugh.
Some people I know that have MS always have in the back of their mind that maybe it’s undiagnosed Lyme. In my case, I’ve had IV Rocephin for pneumonia and had absolutely no Herxheimer, so that was my own personal confirmation that it wasn’t Lyme.
As I said previously, a neuro told me that Lyme is really hard to detect in the chronic stage because it hides so well, and so I’m sure there are people with a MS diagnosis that probably do have Lyme. Glad you got the right diagnosis before you got on the wrong treatment.
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