Yes, a typo.
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/
Typso ping! Careful with those limes: they're very acidic, but have almost no vitamin C. You could get scurvy!
I don’t think chronic Lyme is imagined. I had a neurologist tell me that late stage Lyme can mimic MS and that Lyme liked to “hide” (her word, not mine) in the CNS which sometimes made it very difficult to diagnose, and even more difficult to get rid of.
I have MS and I have a friend who has been diagnosed with chronic Lyme. I would say that the difference between our symptoms is that she actually seems sick, as in flu symptoms and joint problems, my problems are strictly neurological.
Do you know if your friend was treated for Lyme in its early stage?
Yes, a typo.
Hyperbaric Oxygen is being used to successfully treat both conditions.
There’s also been some research on autism being misdiagnosed and lyme disease being the culprit. (Dr. Jo Feingold is the researcher I’ve seen, but I don’t have an online source to quote)
Lime Disease AND "inguanal lymp nodes"
The Night of the Inguana.
Acupuncturists have a very classic take on things. “If a person thinks they have a medical problem, then they have a medical problem.”
This is actually a very intelligent approach to diagnosis, and how many new diseases are discovered.
Even when it is obvious that it is all in their head, medical caregivers shouldn’t make the assumption that the symptom is the problem.
For a seemingly silly example, there are the “tin foil hat crowd”. People who have some small variation to the idea that “someone is transmitting messages to my brain”. And almost equally silly, that they generally all believe that if they wear a tin foil hat, it will stop the transmissions.
To a normal person that sounds ridiculous. However, if you examine it in detail, you notice something that should grab your attention: almost all of these people describe the *same* problem, and find some relief with the *same* solution.
Wait a minute.
What are the odds that a whole bunch of people, with no obvious connection, and over a period of many years, would describe the *same* condition, with little variation?
The odds of that happening by chance are very slim indeed.
But then, that they all share the same remedy, the tin foil hat? That should *not* happen. There is “some there, there.”
It is next to impossible for hundreds or thousands of people to have the same problem with the same solution, unless there actually *is* a problem. This means that they share some condition that you are unaware of. The unknown has given you a very big clue.
Because they think they have a problem, they do have a problem. It is highly unlikely that it is what they think the problem is, but it is still a problem, nonetheless.
Now apply this chain of reasoning to some of the medical mysteries floating around today:
Chronic Lyme Disease
Chronic Fatigue Syndrome
Morgellons Disease
etc.
I remember many years ago, seeing the John Travolta movie “The Boy In The Plastic Bubble”, about a young man with a non-functional immune system. It came out in 1976, and was a pretty unremarkable film.
However, shortly thereafter, there started to be more and more reports in the news of adults whose immune systems had failed. There didn’t seem to be any consensus as to why, just that it was happening.
At the time, it impressed me that there was “a there, there”, that it just wasn’t bad luck or coincidence. Of course, it turned out to be AIDS. They just didn’t know it yet.
Today, I’ve noticed that an increasing number of people are also suffering from “extensive allergies”. Often with some kind of chemical trigger, like having new carpets installed, they will suddenly become very sensitive to all sorts of cleaners, artificial chemicals, perfumes, etc. Many have to stay indoors in a chemically-free environment.
But they all seem to have the same symptoms. Fortunately, it doesn’t seem to be lethal, just very annoying and somewhat debilitating. But there are just too many people who have it to think “it is all in their heads”.
Doctors who dismiss such things out of hand are missing the point of the exercise.
It’s real. The spirochete has been identified in dormancy during the post-acute phase. I contracted it in 1978 when I lived across the LI sound from Lyme CT, hospitalized for 1 week and with symptoms that endure to this day, but I usually ignore/tolerate them. Symptoms vary for the chronic state, but usually include an arthritis that can migrate from one set of joints to another. After accommodating my symptoms for years, I was recently given cortisone for bilateral shoulder bursae impingement (aka rotator cuff pain and immobility), not only did my shoulders improve but so did my knees, hips and lower back.
That's true, but most doctors will get the screaming heebie-jeebies if you even mention HBOT, because it almost put the medical profession out of business in the 1930s because it cured everything, and left them without any patients. It's particularly effective for strokes.
That's a condition that large fence lizards get from too much sex. Their testicles swell up and make them limp like Chester.
No, a typo is unworthy of notice. Yours was a true Typso, one of the best I’ve seen in recent weeks.
LOL! I wouldn’t eat inguanal lymp nodes - could catch something really bad.
Okay, what be a ‘Typso?’
Good grief, I'm going sydlexic.
I was diagnosed with MS in 2002, while managing a quarter horse farm in southern CT. Two other employees had the flu-like symptoms etc and were treated with antib’s.. I on the other hand, had numbness in my left foot, for about 3 weeks (which I foolishly blew off as a symptom of an arthritic hip - many horse-related crashes in my day) Other than that I had a general lethargy and sensitivity to sunlight.
One morning I woke up with a headache so bad I couldn’t see, in fact I could not see out of my right eye at all. The hospital tested me for stroke, meningitis, lupus, a whole abc list of “itis”’s.. while pumping me full of prednisone etc.
I said Lyme? they said no. I said Lyme? They said no.
I said I worked with 2 people with Lyme disease, it was April (Hotbed of Lyme activity in CT) and in fact we had a horse at Tufts being treated for Lyme. They said no. They decided after 10 days it was MS, said “get counseling and see a neuro” and sent me home.
What I have since been told about Lyme is, the spirochete aim for deep tissue so when the infection is not acute, you can’t get a titre. I’m not a doc, nor an expert, but this is what I was told, and the ELISA panel didn’t say one way or the other.
My diagnosis was based on multiple lesions and ogliconal banding in my csf.
My current neuro from Yale’s MS clinic doesn’t think I am an idiot, (how refreshing) and says that as much as MS mimics Lyme and vice versa, he wouldn’t be surprised to learn that there was a relationship between the bacterial agent in Lyme triggering latent MS exacerbations in a previously asymptomatic patient, the MS becoming the primary clinical symptom as the Lyme goes into “remission”.
Anyway, my 2 cents. My friends with Lyme and I share many of the same symptoms also.
(Dawn53, if you ever want to yap send a PM. *hugs*)
Another test has confirmed the lyme, as it causes the little buggers to fluoresce under black light microscopy, and can detect them in nearly every liquid that can be drawn from the body. I have seen the florescent spirochete in my test with my own eyes, yet the test is not approved and therefore does not count. Go figger that one out.
Does an antibiotic regimen give you relief? Which antibiotics have you been on?
I was diagnosed with MS early on, but since the antibiotics produce a result, MS is off the list.
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