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."
___
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.
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.
bookmark
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.
Disclaimer: Opinions posted on Free Republic are those of the individual posters and do not necessarily represent the opinion of Free Republic or its management. All materials posted herein are protected by copyright law and the exemption for fair use of copyrighted works.