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/
Hi,
Do my symptoms in post 38 sound familiar to you guys?
I’m not in any pain or feel weak, Just this constant buzzing and twitchy feeling. Kind of like the feeling of being extremely anxious, ALL the time. Except I don’t think it’s anxiety. I can feel it even when i’m lying nice and calm in my bed at night.
The reason I ask is a few people have suggested Lyme disease to me.
thanks for posting
Hi Mowowie,
Well, since (as I know now, more than ever after reading this thread) the neurological symptoms of one diagnosis can be frustratingly similar to another in different people! I can understand why you’d want to wait til after vacation! But do follow up on it.. I don’t think any of us here would be comfortable telling you it may be one thing or another, but definitely make sure your Doc listens to you, and doesn’t dismiss anything out of hand.
I hate when Docs do that - but they’re used to people who read up on something and become “dime-store experts” but all they have to do is REALLY listen and ask the right questions.
I’d see your MD and ask specifically to have the various tests, if not to confirm one thing then to rule others out. But like my neuro says.. many symptoms that one Dr. may be confident about relying on in diagnosis, may be called a “cerebral mystery” by another.
The tests I had done (and still have when Dr insists) included a lumbar puncture (not as scary for me as the dentist!) MRI, blood tests, and neuro assessments, among others.
I can tell you that I experience some of the same symptoms you do, including the “buzzing” sometimes, especially in my feet,sometimes hands, like a deep itch or tickle. It affects my vision sometimes, affects my hearing sometimes. Sometimes I have this sensation that half my body is in warm water, like a line right down the middle. (VERY odd.)
Everyone is different! Have it checked out! Make sure they listen to you!
>doctor ran some preliminary blood tests that came up negative.<
Like it’s been mentioned - if you don’t have an active Lyme infection, there probably won’t be a titre. (ELISA and yes! Western Blot!) I remember thinking at the time I was diagnosed that ELISA may miss one thing or another but that WB was more reliable for picking up the Lyme markers - but I’m one of the aforementioned “dime store experts” and I was largely ignored :)
V’s wife!!! Thanks for your post, and good grief, the “brain fog” thing! That’s maddening. I’m so glad you finally found a Doc who worked with you.
At the time, when I was dx’ed, I remember telling them over and over.. I work with horses, I am outdoors, we have lyme disease in animals and employees on our farm *right now*, why won’t you listen to me? Ugh. The whole “When you hear ‘horse’, why look for a ‘zebra’?” thing..
I worked PD and as private investigator for almost 20 years and my train of logic, and rules of factual elimination, and path of reason were absolutely twisted up after trying to figure out why the docs were leaping from one thing to another, and not giving me answers as to how they were eliminating one dx in favor of another.
(Have I mentioned how much I resent Docs who don’t like to listen or condescend to speak to us mere mortal slabs of meat?)
Thank you for the Doc’s name too, I live about 3 hours from the cape (I live in western MA now.) I haven’t had a real exacerbation this year (yet - fingers crossed). My Dad passed away on New Years and all the family crap that goes with it, I was probably stressing myself out more waiting for an exacerbation than the actual drama was causing, so I’ve been holding my breath.
Just the usual look-outs.. I try not to get “too” anything. Too tired, too stressed, too hungry, too hot, too cold, etc etc. Biggest thing is listening to my body when it’s time to sleep.
Ok, I’m babbling, but thanks for this thread everyone.. sometimes things like this make you feel less alone in the weirdness, and I’m grateful for my Freep family.
A Typso is an error that contains its own humorous meaning, especially political humor. Yours qualified because of the combination of “lime” and “aliment” in the sentence.
I mention “epople” here only because it’s my favorite typso.
I’m fond of epople, too. My all-time favorite Typso was one where the poster used “homosezuals” and “reprobats” in the same sentence. That got about 50 progressively-loopy replies.
I get buzzing sometimes, it can be anywhere actually, in an arm, leg, hand, face, etc. Usually it happens if I’ve done too much activity, I don’t have it all the time. As for twitching, there again, it only comes with fatigue of a muscle and I don’t always get it. But both my buzzing and twitching goes along with weakness. If I overdo, I may buzz, or get twitchy muscles, but they also get weak and my legs feel heavy and like jello.
My GP at the time I was trying to get diagnosed, specifically asked me if I “buzzed” and said he had a Lyme patient that reported that symptom.
As an aside, I too experienced what you describe, and it is so out of character for me... I was really used to a very high pressure environment, and to be experiencing high anxiety was very unusual, and a source of anxiety in itself.
As luck would have it (actually Providence, I believe), while testing for other things, my arthritis/pain specialist included vitamin D levels in the panel. When it was found that Vitamin D was extraordinarily low, she started me on 2000 iu a day.
Literally in a days, the jangling nerves just disappeared.
Another thing that is very important is sleep. Sleeping until fully rested (8-10 hrs) is something that most people neglect in our demanding society. But it is every bit an imperative as good diet, as many repairs in the body only take place during sleep. If you, as many others, forgo sleeping, I would highly suggest making allowances.
'Skin crawling' is part and parcel with MS / Lyme / Fibro. The sense can be so severe as to become painful, which is why so many who experience it wind up in over-sized, loose fitting clothes. When severe, it is quite akin to the feeling of a bad sunburn.
Another thing is that muscles won't relax- not that they are tensed, necessarily, but that they remain 'ready' rather than fully relaxing. This is extremely tiring, at least for me.
funny you mentioned vitamin D. That thought actually crossed my mind recently.
I’ve been laid off since last winter and me and the sun have seemed to have parted company lately as well as my sleep patterns are completely frigged up.
i already started taking B12 for my nerves a few weeks ago thinking that might help. It isn’t.
I’m going to pick up some D tonight, see what happens.
Thanks.
I’m going to pick up some D tonight, see what happens.
Careful with the dosage- the 2000iu I mentioned was under a doctors care... I am on 1000iu now and have been for months, but you probably ought to ask an MD what is a safe dose.
For your further perusal, with credz and thanks primarily to blam:
I just bought a bottle of D-3 1000iu and took one.
I’m hoping for the best :)
i’ll check out that link.
thanks again.
Ahhh...damned lyme still occasionally works the brain thing. Yes, the doc up Massachusetts way is Dr. Sam Donta. He believes in tetra, not all do. Especially for advanced lyme like I had which was in the CNS and brain. Tetra allegedly does not pass the blood brain barrier. It did with me. I actually got better and could think~! Now, how about this. My cuz worked as a horse walker in the stables down in Monmouth NJ. She is my age and diagnosed MS. Wanna bet four months of tetra would clear her up. I think it would. Don’t think anybody would except that.
This is a mission I have evangelized, but it is hard for others to listen to or accept. Sigh!
V’s wife.
Man, you gotta do the tetra. It sucks but you actually get CURED! V’s wife.
You would rather live through all this then do the tetra? Man, I was crawling in my skin, anxiety, heart palps, muscle aches. Did the tetra and it’s like the arnold swartz of drugs. It kicked but and made me sick but one by one those symptoms were eliminated. I mean, really! I got well, all the weird stuff went away. It is worth the stomache cramps, sunburn, headaches, herx...all of it. Because you get well. None of what y’all are talkin is getting you well. I have been to hell and back. I am well. V’s wife.
I’m on a dog list, and a story has been circulating about dogs who have Lyme disease, and how they become very aggressive. Once the medicine is given to counteract, they become docile again.
We’ve seen the same thing in horses.
>>a story has been circulating about dogs who have Lyme disease, and how they become very aggressive
Perfectly nice horses are turned into over-sensitive hyper uncontrollable monsters. They hurt all over and tell us the only way they can!
We had a mare with an IV sewn in her neck getting blasted 3x a day for 10 days with tetra til she recovered. Hand walked and cooped up but the change in her back to a sweet quiet mare was like watching Hyde transform back to Jeckyl.
And this too, was about the time I was dx’ed. But no, “no way” I could have lyme disease.
Tet is very hard on me. I need to be hospitalized when I herx in any case, and tet dang near kills me. Now, maybe if I endured the herx on dox or amox, and then switched out to tet... could be... because then the lion's share of the bugs are dead from the amox, so when I switch to tet, while I may herx again, it will likely be less severe in that case.
It could be that I can never have tet- that the extra reaction isn't herx at all, but an allergy or incompatibility of some kind.
I have been to hell and back. I am well.
I am happy for you, but you must understand that you are lucky in that regard. There are many who fight Lyme for the rest of their lives, and never find healing.
In my case, the doctors are reasonably certain the infection is done, (they all admit to 'an' infection, though not all are convinced of lyme) and I am left to deal with the residual damage. Some of that is from being sedentary for five and more years, some is physical damage caused by the bug, and some is just age. I will probably never come back all the way.
I’ll ask the doc about it when i see him in a couple of weeks.
thanks
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