Topic: New IDSA guidelines- hold onto your hats! BAD!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I wouldn't spit in their mouths if their teeth were on fire!
Ahhhhhhhhhhhhhhhhhhhhhhhh!!!!!!!!!!!!!!!!
The new IDSA guidelines is setting up more people to become sick. In their new guidelines they plan to recommend that ONE dose of Doxy will "stop the disease in it's tracks".
The IDSA's "ONE pill cures all".. or what I call... The Idiot's Magic Bullet Theory (ie.. Kennedy assassination) does NOT work and the ONE study it was based on (done by IDSA members- one hand washing the other?) is flawed... at best.
Ya THINK insurance is going to be happy to hear that ONE pill will cure Lyme???
This was/is a Hopkins routine protocol also (promoted by their Infectious Disease docs too)... and it has to STOP!!!
Quote from news article with link below-
"There is one substantial change to the IDSA guidelines, Wormser said. It will advise doctors that, on a selective basis, they can prescribe a single large dose of antibiotics to a patient immediately after a black-legged tick bite, before the patient starts exhibiting any symptoms of the disease."
Problem is.. Patients with a rash and/or signs and symptoms around here are getting this ONE PILL cure all prescribed too.. NOT just the ones with a tick bite only!!!
And OBVIOUSLY it doesn't work or we would ALL be cured by now!!!
This situation MUST be addressed... immediately!
I REALLY thought they had given up this stupid stuff.. but NOOOOOOOO .. they ARE making it worse.
Pesky Lyme disease hangs on Medical professionals disagree on treatment
By Robert Miller
THE NEWS-TIMES If you get bitten by a black-legged tick, what's your next move?
If you start showing symptoms of Lyme disease, one school of treatment argues you should take at least two months of antibiotics for the simplest case and much more for complicated ones.
You can also expect the tick to be carrying more than the strain of bacteria that causes the disease.
Dr. Richard Horowitz of Hyde Park, N.Y., president-elect of the International Lyme and Associated Diseases Society (ILADS), said "99.9 percent of the patients I see with Lyme disease are co-infected. There are 10 other diseases we should be looking for."
Horowitz spoke last week at a forum held by the Newtown Lyme Disease Task Force.
The second school of thought would argue that the longest you should ever take antibiotics is 28 days -- even if you've got the painful arthritis that's a symptom of Lyme.
It also questions whether there's a condition called chronic Lyme disease -- a persistent infection that can last for years -- and discounts the threat of omnipresent co-infection.
"The evidence does not support that -- far from it," said Dr. Gary Wormser, chief of the infectious diseases division at New York Medical College in Valhalla, N.Y., and vice-chairman of its department of medicine.
The differences between the two approaches and the implications for the way patients are treated for Lyme disease are profound. And this comes at a time of increasing threat from the disease.
Lyme disease is at the epidemic stage in the state. There were 1,810 cases reported to the state Department of Public Health in 2005, compared to 1,348 in 2004 -- a 26 percent increase.
Connecticut has the highest per capita rate of Lyme disease in the country with about 136 cases per 100,000 people.
But by all accounts, the disease is underreported by a factor of 10 or more.
"The Centers for Disease Control and Prevention reported there were 19,804 cases (nationwide) of Lyme disease in 2004," said Pat Smith, president of the Lyme Disease Association, a patient advocacy group, who also spoke at the Task Force meeting.
"That means there were about 200,000 cases, and that doesn't count the ones that don't fit the CDC requirements."
Lyme disease is caused by a cork-screw-shaped bacteria, Borrelia burgdorferi. The black-legged tick -- also known as the deer tick -- ingests the bacteria when it feeds on deer, white-footed mice and small rodents, which act as sort of moveable reservoirs of Borrelia. When an infected tick bites a human, the human can get infected as well.
The initial symptoms of the disease can include a bull's-eye rash, fever, headache and sore joints -- like a case of the flu without a cough. If the disease is diagnosed early, it can usually be treated successfully with a month of antibiotics.
"We've found there's a six-week window where treatment is really successful," said Thomas Forschner, executive director of the Lyme Disease Foundation based in Tolland, Conn.
But only about half the people infected by a tick bite get the telltale rash. Some have no symptoms at all. Others are treated with antibiotics, but relapse. They can develop much more severe symptoms, including swollen joints.
But because the most common blood tests for Lyme disease are highly inaccurate, doctors who rely on them can easily misdiagnose or disregard the symptoms. The CDC says doctors should not base a diagnosis on those tests but on clinical observations.
"You only use the blood tests to support your diagnosis," said Horowitz of ILADS, whose members are often doctors whose practices are devoted to treating the disease.
What's most controversial is the diagnosis of chronic Lyme disease.
Doctors in the ILADS and patient advocates like Smith insist that people can develop long-term, recurring Lyme infections that can manifest themselves in a host of symptoms -- chronic fatigue, sight and hearing loss, memory loss, depression and personality changes, heart damage and arthritic pain that can flare up in different places.
"It's a multi-system bacterial infection," Horowitz said at the Newtown Lyme Task Force meeting. "There are 300 different strains of Borrelia burgdorferi internationally and 100 in the United States. The symptoms can come and go and they can migrate. It's a gestalt of symptoms."
Doctors who are convinced chronic Lyme disease exists treat those patients with long-term courses of antibiotics, often lasting months or years. The ILADS criteria do not limit how long patients should be on antibiotics, leaving that up to the doctors' discretion.
Horowitz said his rule of thumb is to continue antibiotics until a patient is symptom-free for two months.
Horowitz also said ticks carry several other illnesses, including anaplasmosis, the malaria-like babesiosis, and bartonella, commonly known as Cat Scratch fever. All of these come with their own set of symptoms, which must be treated as well. This means patients must get a mix of antibiotics.
"When I see a patient with chronic Lyme disease, I see a patient with chronic Lyme and co-infection," he said.
But Wormser of New York Medical College follows the guidelines of the Infectious Diseases Society, or IDSA. He said there's no evidence for so much co-infection in Lyme patients. IDSA also says there's no scientific proof for a diagnosis of chronic Lyme disease, and thus no need whatsoever for long-term antibiotic therapy.
"Study after study has shown this," he said. They've tested patients who claim they have chronic Lyme disease. Half never had Lyme disease to begin with.
"Another study at Yale showed that half the people being treated for chronic Lyme actually had other treatable diseases," Wormser said.
Wormser co-authored the IDSA Lyme disease guidelines. The society represents about 8,000 infectious disease specialists in the United States.
The society is now rewriting those guidelines. Wormser said he does not expect them to be substantially different than they are now .
But proponents of more liberal use of antibiotics to treat Lyme said last week that they expect, if anything, the new IDSA guidelines will be even more conservative than they are now.
"It doesn't make any sense," said Forschner of the Lyme Disease Foundation about any reduction in the IDSA guidelines, which now allow 14 to 28 days of antibiotic treatment. "What difference does a little bit more of antibiotics make?"
Forschner said the scientific literature does not support long-term antibiotic therapy for early Lyme disease, which some doctors now prescribe.
"I think the new IDSA guidelines are in reaction to that. But why swing the pendulum so far in the other direction?" Forschner said.
There is one substantial change to the IDSA guidelines, Wormser said. It will advise doctors that, on a selective basis, they can prescribe a single large dose of antibiotics to a patient immediately after a black-legged tick bite, before the patient starts exhibiting any symptoms of the disease.
A 2001 study in the New England Journal of Medicine showed that such treatment, given within three days of a deer tick bite, was 87 percent effective in stopping the disease in its tracks.
Smith of the Lyme Disease Association said what her group would like is for doctors to tell patients with Lyme disease that there are two established standards of care -- the conservative one endorsed by the infectious diseases association, and the liberal one written by the International Lyme and Associated Diseases Society.
Then, at the very least, she said, patients would know the options. "We need to make sure the patients are aware of this."
Smith praised a bill in the U.S. Congress sponsored by Sen. Christopher Dodd, D-Conn., and Sen. Rick Santorum, R-Pa., that would provide an additional $100 million in federal funding for Lyme research over the next five years.
Smith said the federal government currently spends about $32 million a year for research on the disease and all its manifestations.
"Another $20 million a year will be a significant increase," she said.
The funding is also tied to specific goals, including finding a reliable blood test for Lyme infection.
"It took researchers five or six years to find a reliable blood test for AIDS," she said. "We've know about Lyme disease for 30 years and we still don't have a reliable blood test. That's outrageous."
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Of course.. this is only my opinion on the topic...
posted
I have no regards for ID doctors. When iwas dx in 2001, I went to one...6 weeks of doxy tablets and 3 weeks of iv rocephin. Then he fired me!!! He told me that there was nothing else he could do or want to do. Talk about politics..I have learned alot about it these last 5 yrs.
I agree with you, Tincup. They are surely ist class Ducks along with Rheumies....grrrrr.
Jean perplexed Posts: 324 | From Lexington, KY, USA | Registered: Dec 2001
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trueblue
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-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Well....what can we expect from these ducks. Here we have Shapiro testifying that he has NEVER seen a case of chronic lyme and he's been treating lyme for a long time.
I have never been one to ascribe to conspiratorial theories....but since my 12 year bout with lyme, I have become a true skeptic.
I can't answer your question, Tinny. Is there an answer? The Alligator Pit may not be big enough for all 8,000 members of IDSA.
P.S. Glad to see you here again! Got any good news? Hope YOU are doing well.
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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WildCondor
Unregistered
posted
New name....
IGNORANT DUCK SOCIETY OF AMERICA (replace with a$$#oles as needed)
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My 16 year old grandson just got a script for doxy for one year.....for ZITS!!
I doubt one doxy would kill one zit, for heaven's sake.
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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Foggy
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posted
When these ducks have something more efficacious, safer, and affordable than LT abx & antimalarials, we're all ears.
Until then, Zip It!
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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Carol B
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posted
Once there was a Duck on Smack. Opened his mouth to Quack. So you're ill? Take one pill ! "Say What" cried the Lymie "Are you Whack?"
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Beverly
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posted
Can't even get a word out.....I think I'm gonna be sick.... Posts: 6638 | From Michigan | Registered: Jun 2001
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posted
Another thing I noticed about the article that really upsets me is that nowhere in the article is there any reference to neurological symptoms caused by Lyme Disease -- it is all about arthritis and chronic fatigue -- left out the neurological symptoms which can sometimes be objective findings.
I have never liked the word "chronic". When someone asks or I am talking about hubby's illness I tell them, "He has Lyme disease" -- I don't say, "He has chronic Lyme disease." You either have it or you don't.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
First, let me tackle Shapiro, if he testified he's never seen a case of persistant Lyme, then he either needs to get a checkup for Lyme, quit signing his name to papers for which he did nothing, or stop lying.
Recurrent erythema migrans despite extended antibiotic treatment with minocycline in a patient with persisting Borrelia burgdorferi infection.
Liegner KB, Shapiro JR, Ramsay D, Halperin AJ, Hogrefe W, Kong L.
Department of Medicine, Northern Westchester Hospital Center, Mount Kisco, NY.
Erythema migrans recurred in a patient 6 months after a course of treatment with minocycline for Lyme disease. Polymerase chain reaction on heparinized peripheral blood at that time demonstrated the presence of Borrelia burgdorferi-specific DNA. The patient was seronegative by Lyme enzyme-linked immunosorbent assay but showed suspicious bands on Western blot. Findings of a Warthin-Starry stain of a skin biopsy specimen of the eruption revealed a Borrelia-compatible structure. Reinfection was not believed to have occurred. Further treatment with minocycline led to resolution of the erythema migrans.
Publication Types: Case Reports
PMID: 8436647 [PubMed - indexed for MEDLINE
But how do we stop these DUCKS, WE MUST GET POLITICAL.
The only reason they are able to do this is they have the power, we must find a way to take that away from them, and the only way to do that is to go over their heads.
Policy change fellas, policy change.
Posts: 559 | From Cary, NC | Registered: May 2006
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cantgiveupyet
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Member # 8165
posted
Article made me sick.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
quote:Originally posted by LYMESCIENCE:
But how do we stop these DUCKS, WE MUST GET POLITICAL.
The only reason they are able to do this is they have the power, we must find a way to take that away from them, and the only way to do that is to go over their heads.
I keep having this verse from an old Ralph McTell song go around in my head...
"I've thought about it, I really have tried And the answer, quite simply, is that they tell lies And they've got the power and what they decide Affects your life and my life and everybody's life, beside"
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
Ya know -- the way I see it is they do themselves in with every word, every step - like Shapiro does.
What it takes is a strong and consistent counter-punch strategy --
They will keep digging themselves in deeper. Those who act in arrogance always, always make mistakes. It's like a Law of Nature.
If we stay strong and support the LLMD's to do the same - if we don't go away..
they just keep looking stupider and stupider in my view.
The thing is, this is so very serious because these guys effect the front lines. I ran into one of these maniacs in the ER the other day -- who behaved so unprofessionally that he took his sights off a severe allergic reaction in order to lecture me on my kid being on mino too long. I had to remind HIM of my kid blowing up like a balloon behind him - and WHY we went to the ER. I heard him talking about it for ten minutes among the staff after he left our room. (Whereas the Doc the night before had no problem with the treatment.) The Docs on the frontline seem to be caught in a quagmire themselves.
So - we can't wait for the IDSA to crash on Lyme -- we have to help it along BIGTIME.
We have the scientific backing - and they don't.. they simply have no objective criteria. So what they have power, it only means they can fall harder. It's only a matter of time so long as we keep fighting, and fighting hard for what's right.
Mo
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
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david1097
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Before any comments can be made one has to see the new IDSA guidelines. There is an increased recognition by IDSA of the problems related to lyme, the question is how they will cast the problems and what methods of disease mitigation they will propose.
I think that we should wait before knocking what they say. A lot of people with lyme have been treated by ID's. One also has to keep in mind that there is significant division in the ID community its self, partly due to the political nature of Lyme and the fact that none of the ID's want to even come close to "chronic" cases.
Also keep in mind that the "old guard" are changing their position, ever so slightly on an incremental basis trying to account for the facts regarding treatment failures with some of the patients. Once this group changes, the IDSA will follow.
In the changes that are being made, remember the the big money maker for the "old guard" was supposed to be the lyme vacine, they call could retire on their royalties. That one blew up in their face because they where to anxious to push it through. If *new* disease can be *identified* and a *new* vacince ad tests developed then they have a second shot. The only way to do this is for them to say "lyme is nothing", BUT this NEW thing we found (and patented all the surrounding pharmacology and biology) is the cause of all the "CHRONIC" problems. Since this new thing is so bad, you better get your vacine and testing done or you too could end up like all these other chronic sufferers.
As always it all comes down to money.
Posts: 1184 | From north america | Registered: Feb 2003
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Michelle M
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What's really funny is that like Mo says, they are making themselves look like idiots.
Every single person I know -- in my personal and professional life -- knows what I have been through with illness, misdiagnosis after misdiagnosis, and eventally, treatment by a good lyme doctor.
Every single person in my fly fishing club (numbering hundreds) knows. Many of them know someone else with lyme.
More and more, mainstream people understand that as a general truth, if you suspect you have lyme, you should seek out a lyme specialist as your regular doctor will most assuredly be clueless.
Frankly, it is not lyme disease patients who are being laughed at any longer. It is these buffoons.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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bettyg
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David stated something about waiting to see WHAT HAPPENS; good point.
However, everyone of us CAN do things now preparing for what they intend to do. Know who you are going to contact and even write the emails placing them in draft/HOLD for now.
Then when we find out something CONCRETE; then send them off promptly. We want to have ORGANIZED our thoughts and not do something irrational so they file "13" us promptly.
Tincup, on the 2 private emails you sent me, I sent them to my group list of LYMIES I correspond with..on here & other places!
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Persons who remove attached ticks should be monitored closely for signs and symptoms of tick-borne diseases for up to 30 days.
Single-dose doxycycline therapy may be considered for deer tick bites when the tick has been on the person for at least 36 hours.
Most patients who develop Lyme disease are cured with a single course of 14-28 days of antibiotics, depending on the stage of their illness. Occasionally a second course of treatment is necessary.
More prolonged antibiotic therapy is not recommended and may be dangerous, according to Dr. Wormser.
``Nearly all people - more than 95 percent - who do get sick with Lyme disease and are treated with the recommended course of antibiotics get better and go on with their lives,'' said Dr. Wormser, lead author of IDSA's 2000 guidelines on Lyme disease.
He also is chair of the expert panel currently considering revisions to the guidelines, which are due out later this summer. The expert panel reviews the published scientific literature related to the topic before reaching consensus on guideline recommendations.
Chronic or Post-Lyme Disease Syndrome
A small number of patients report a variety of non-specific symptoms such as generalized pain, joint pain or fatigue following an episode of Lyme disease that has been treated appropriately.
A small number of physicians advocate treating these patients with repeated or prolonged courses of oral or intravenous (IV) antibiotics, but Dr. Wormser cautioned that ``there are no convincing published data showing such treatment to be effective.''
Furthermore, long-term antibiotic therapy may be dangerous and it also can lead to drug-resistant superbugs that are impossible to treat, he added.
``These patients with symptoms that persist for weeks, months or longer appear to be a heterogeneous group, and they report non-specific symptoms that also are associated with a number of other medical diseases, both infectious and noninfectious,'' he said.
Patients who continue to have symptoms that persist after appropriate antibiotic treatment for Lyme disease should consult their physicians about whether the diagnosis was accurate or if they may have a different or new illness.
More information about Lyme disease--including a fact sheet for the public and practice guidelines for physicians--can be found on the IDSA website at www.idsociety.org .
# # #
IDSA is an organization of physicians, scientists and other health care professionals dedicated to promoting human health through excellence in infectious diseases research, education, prevention and patient care. Major programs of IDSA include publication of two journals, The Journal of Infectious Diseases and Clinical Infectious Diseases, an Annual Meeting, awards and fellowships, public policy and advocacy, practice guidelines and other membership services. The Society, which has 8,000 members, was founded in 1963 and is headquartered in Alexandria, VA.
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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posted
F-ing *******! While there might be limited studies in the papers he's reading, why doesn't he keep his mind open? At least the possibility?
One thing I've heard dr. F (columbia) say is - the guy who first though that ulcers are caused by bacteria and who was the laughing stock of the "academic" medical community for many years in the 50's just got his Nobel prize last year.
Posts: 109 | Registered: Aug 2005
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shazdancer
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About this prophylactic antibiotic thing...
Correct me if I'm wrong, but I thought that when we were prescribed antibiotics, say for strep throat or whatever, we were always to take them for at least 10 days, in order to kill all the bugs and not allow resistant ones to proliferate.
So what the HE!! are we doing if we take an antibiotic for one day???
Just asking, maybe IDSA would like to explain it to me, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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posted
Yes. such a task could easily be accomplished. But once you cross that line, there's no turning back.
Posts: 559 | From Cary, NC | Registered: May 2006
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lymemomtooo
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The ID ducks are not getting educated on new break throughs in LD.
I was at a Chester Co. Pa. Lyme Support Group meeting last year and it was just prior to ILADS and LDA conference and someone, had gotten a copy of the ID conference form.
Also understand that this is from my pea brain memory so I may be off some but there is a point coming.
Of all of the presentations, and I think it was more than 1 day, they found one that related to Lyme disease and it was presented along with a number of other meetings at the same time.
Apparently like most conferences, you can choose between a few things to see, that are all at the same time. ..So the point that the speaker in Chester Co made was that they are not giving this important disease any priority at their conference. Quite the opposite.
And I wasn't there so can only speculate on the numbers that choose the meeting that mentioned LD. lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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Foggy
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These elitest academic ducks should revew their med school textbooks. If advancements in medical science were base exclusively on published data and not empirically, we'd still be stuck in the dark ages.
Interesting how upon criticizing lt abx for Lyme, they never add the caviat about the dearth of $ that goes towards producing this data and the narrow scope of the studies they cite.
The playing field is not level. In general, our LLMDs are private practitioners who are not situated in deep-pocketed academic research institutes. They also fail to state that until the Columbia center is open, there is NO research institute in the world exlusively dedicated to the study of Lyme & tick borne illnesses.
Time for these MD to be more candid about the situation.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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posted
Does anyone know when the various outcome papers from Columbia's recent study will be published? (My understanding is that these are in the works. Correct?)
I read somewhere that Dr. Fallon feels these have the potential to change treatment guidelines (for the better) for chronic Lyme. Tincup? Others??
Posts: 19 | From St Augustine, FL | Registered: Mar 2006
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posted
Yeah, I heard talk of this. He was trying to publish in the May edition of Nuerology, but there seems to be some kind of institutional pressure to keep this study from the medical journals. He's having a more difficult time publishing than he should. Supposedly, he is being critasized for methodilogical flaws or something from the "peer review"
Posts: 559 | From Cary, NC | Registered: May 2006
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posted
Rest assured, the folks at the IDSA are well aware of Dr. Fallon and his research. They are simply choosing to ignore this in their new guildlines which are not going to be changed much, at least accorind to folks such as Dr. Shapiro.
If they knew of work that indicated what Dr. Fallon's work indicated, common sence says that if the held such data in any esteem, they would make damned sure they didn't publish their guildlines until after this study came out, and after the medical community had a chance to "peer review"
The stance they are taking now tells me that they have been prepared for this study and its results for a long time. Be prepared for another organized attach, this time it will be on the work done at Columbia by Dr. Brain Fallon.
These people may be asses, but they aren't stupid. They are not going to make pronouncements like they are about upcoming guildlines unless they arleady have a plan in place concerning Dr. Fallon.
I hope that we, the Lyme community, will be able to help Dr. Fallon through that time, as the fight has not yet begun. Let us try to make it so that even though they have a plan in place, they didn't prepare for the Lyme Community.
I see a sign coming home from the Lyme Doc every week. Its a picuture of Abraham Lincoln, underneath his picture it reads: FAILED, FAILED, FAILED...... AND THEN PERSISTANCE!
We can win if we never give up!
Posts: 559 | From Cary, NC | Registered: May 2006
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That's Outrageous, Tincup@![[Mad]](mad.gif)
Here we have Shapiro testifying that he has NEVER seen a case of chronic lyme and he's been treating lyme for a long time.![[kiss]](graemlins/kissing.gif)
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