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» LymeNet Flash » Questions and Discussion » Medical Questions » "Prof: Chronic Lyme Disease A Lemon"

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Author Topic: "Prof: Chronic Lyme Disease A Lemon"
Ann-OH
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Here is an article that should make any sane person cringe. How any medical professional can make such blanket statements of denial is beyond me.
Ann-OH

http://www.dailycampus.com/calendar/
[University of CT]
Prof: Chronic Lyme Disease A Lemon
Findings Cause Treatment Controversy
By: Andrew Peters
Posted: 11/27/07
A UConn Health Center professor recently created controversy voicing his conclusion that the condition known as Chronic Lyme disease has no scientific basis and medication should not be prescribed to treat it.

Dr. Henry Feder's argument upset chronic Lyme patient advocates, who believe the disease is legitimate.

Feder's Oct. 4 article in the New England Journal of Medicine, "A Critical Appraisal of 'Chronic Lyme Disease,'" argued that chronic Lyme disease is an unfounded explanation for a variety of other symptoms that aren't caused by the Lyme bacteria.

"Chronic Lyme disease, which is equated with chronic B. burgdorferi infection, is a misnomer, and the use of prolonged, dangerous, and expensive antibiotic treatments for it is not warranted," reads the report, which was authored by Feder and five other members of the Ad Hoc International Lyme Disease Group.

Feder's article advised against prolonged antibiotic treatment for chronic Lyme patients, angering those who contest that those treatments can still help. In response to the article, a group of about 25 protesters gathered outside the Health Center, proclaiming "Lyme kills!" and calling for him to be fired.

Lyme disease, named after the Connecticut town where it was common in the 1970s, is caused by the bacteria Borrelia burgdorferi and transmitted through tick bites - usually when the tick is attached for over a day, Feder said.

A large red skin rash commonly develops between three to 10 days after infection, which may be accompanied by fever, fatigue, or joint or muscle pain - but nearly all cases can be resolved quickly with antibiotics. However, for between 5 to 10 percent of people who develop the additional symptoms, the joint and muscle pains persist, Feder said.

The mysterious lingering symptoms have long been a source of debate. Feder contests that the Lyme bacteria is eliminated by the first bout of antibiotics, and there is no use in additional antibiotic treatments. But supporters of the chronic Lyme disease theory aren't so sure - and were upset by Feder's recommendation that antibiotics shouldn't be used to treat the symptoms.

"There's not enough data for Feder to come to such a strong conclusion that there are no benefits of treatment; we can't be sure that Lyme disease is eradicated [by the initial antibiotics]," said Dr. Daniel Cameron, president of the International Lyme and Associated Diseases Society (ILADS). "That's a frustration. ILADS is arguing that physicians who went to medical school should be able to use personal judgment when treating Lyme patients."

But Feder refuted the notion that lingering symptoms mean the Lyme bacteria is still present.

'[Continuing to show symptoms] does not mean you're still infected," Feder said. "That's part of this controversy."

Although it can be difficult to pinpoint the causes of the chronic Lyme symptoms, Feder is fairly certain of one thing: it's not actually Lyme.

"Persistent Lyme infection unresponsive to antibiotics has not been scientifically demonstrated using hard science," Feder said.

"Chronic Lyme disease is the latest in a series of syndromes that have been postulated in an attempt to attribute medically unexplained symptoms to particular infections," his article reads.

But doctors like Cameron say that not enough is known about Lyme disease to draw such strong conclusions about treatment.

"Controversy always happens when there's very little data," Cameron said. "For now, we need to let the doctors use their own judgment. I don't think it's going to be nearly as simple as Dr. Feder and his colleagues are projecting.

"I don't understand why they had to make such a strong statement without including any of the ILADS numbers and potentially denying a patient treatment that may help them."

But continuing antibiotic treatment if there's no Lyme bacteria present can be dangerous, Feder said. Those who believe they are suffering from chronic Lyme disease often spend months and years obtaining risky treatment for an illness they don't have.

Feder said some treatments for chronic Lyme - such as intravenous antibiotics - can do much more harm than good.

"IV antibiotics can cause clots or severe infections," Feder said. "The risks are real; the costs are tremendous."

Regardless of the risks, Feder doesn't think his report will sway chronic Lyme advocates.

"People who believe are not going to change - it's almost like a religion," Feder said. "I can't say they're wrong, but I can say science is not on their side."

"There is a counterculture of physicians who seem to blame every unknown ill on Lyme disease," Feder said. "A lot of things get blamed on Lyme that are not Lyme's fault."

He estimated there are thousands of patients in Connecticut alone who believe they have the illness - probably dozens at UConn alone.

"Maybe [chronic Lyme patients] are stressed, depressed, have chronic fatigue or chronic migraines," Feder suggested instead. "But they don't like some of those answers."

"Many patients with intermittent or selflimited symptoms may feel better over time as a result of the natural course of their condition, and controlled trials indicate that nearly 40 percent of patients with post-Lyme disease symptoms have a positive response to placebo," according to the article.

But it would take much more conclusive research to convince doctors like Cameron that antibiotics can't help.

"I always welcome discussion of benefits and drawbacks of treatment," Cameron said. "What I don't like is when strong recommendations are made without discussing limitations of the data."

Contact Andrew Peters at

[email protected].

--------------------------------------------------------------------------------

� Copyright 2007 The Daily Campus

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adamm
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[toilet] [Mad] [cussing] [puke]

[ 28. November 2007, 09:36 AM: Message edited by: adamm ]

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Vermont_Lymie
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[puke] I would be happy to join any protest of this major idiot. Everything he says is so patently unscientific, I am amazed that any journalist or physician can take him and his 'Ad Hoc International Lyme Disease Group' seriously.

Seems that he tips his hand about their bottom line and motivation when he writes,

"....and expensive antibiotic treatments for it is not warranted."

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polar blast
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he is for the insurence company...that is why he keeps mentioning the cost of the antibiotic...WHY SHOULD A DOCTOR WORRY ABOUT THE COST OF AN ANTIBIOTIC?????IS HE PAYING FOR THE MEDS...MAKES YOU WONDER???
eric

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Michelle M
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Considering the dozens and dozens of published, peer-reviewed studies demonstrating the ability of the bacteria to survive and flourish notwithstanding multiple courses of antibiotics,

WHAT PART OF THAT IS HE NOT GETTING???

Can he READ???

What part of this is not science-based???

This just mystifies me!!!

Even assuming (generously) that 80% of all victims are cured immediately, 20% of the not-cured ones = a staggering number of chronic lyme patients. Annually. Cumulatively.

We are real.

They need to get real.

Michelle

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Michelle M
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Let me tell you how I really feel.

Around 20,000 cases of lyme were officially "reported" to the CDC in 2006.

The CDC itself admits underreporting by a factor of about 10. So make that, in realty, about 200,000 new cases of lyme just last year.

If just 5% of us become chronic (and the IDSA itself actually admits this!), then are essentially saying that it is fine with them if 10,000 patients a year suffer from acknowledged, untreated chronic lyme disease.

If that number is 10% that fails treatment (and allowing for treatment delays and misdiagnoses, of course we know the number is WAAAAY higher, but for argument's sake let's say 10%), then the IDSA in its infinite wisdom is saying:

"It's OK with us if 20,000 new patients a year suffer with chronic lyme. We know about you, we acknowledge you, but we aren't going to do anything for you! Go pound sand!"

There. I feel better, now I've worked out the numbers.

See, the IDSA actually DOES in its infinite wisdom allow that a certain percentage of lyme patients do fail treatment. I mean, they leave a tiny little window there. We all know the window is in reality much broader, but at least they leave it open just a chink, likely to try and crawl through somewhere down the road to avoid looking like complete idiots.

Anyway, just thought you'd like to know exactly how many people the IDSA thought are acceptable to throw away.

Quite a few, sadly, when you look at the real numbers.

Michelle

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Bitrex
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What I've always wondered is why the physicians who come down so strongly against chronic Lyme only do so to reject the idea of it existing, but never offer any reasonable alternative explanations.



For the sake of argument, let's take the position that assume that chronic Lyme does not exist. That then means that there are tens of thousands of people suffering debilitating symptoms from an unknown or possibly multiple unknown sources. If one believes that chronic Lyme does not exist, this is pretty much the position that one has to take. For whatever reason, that never makes the news; you never see a headline "Doctor Admits Illnesses of Unknown Origin Afflict Thousands", it's always essentially "Chronic Lyme Doesn't Exist And We Don't Know/Care What Else It Could Be."



One emergency room physician saw me during a particularly bad stretch, and after looking at my symptoms he told me pretty much verbatim: "You have these symptoms, but I don't know what's wrong with you. Most likely, neither of us will ever find out, and you may or may not ever get better."
At least he was honest, but that kind of answer is unacceptable for a patient. One can tell from the article that if the professor knew how badly this illness makes people feel he would know that his piddly little warnings about the dangers of long term antibiotics wouldn't deter anyone if there was the slightest chance of symptomatic improvement. From this side of the fence, it really sounds like nothing more than an attempt at professional *** -covering.



I do enjoy his pseudo-concern for the patient and IV antibiotic therapy: "The risks are real, the costs are tremendous." More people probably die each year in the US from lightning strikes than from antibiotic treatment.


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Lymetoo
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That's really pathetic. Why is this the only disease where if your symptoms continue, it isn't real?? You're cured, but you still have symptoms???? [shake] [rant]

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Opinions, not medical advice!

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minimonkey
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Same old same old -- why are we still surprised?

Apparently science has no meaning when it comes to this sort of logic... in psychology, we refer to what Dr. F here is doing as "magical thinking" [Wink]

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It's something in between, I guess"

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luvs2ride
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Bitrex said:

For the sake of argument, let's take the position that assume that chronic Lyme does not exist. That then means that there are tens of thousands of people suffering debilitating symptoms from an unknown or possibly multiple unknown sources. If one believes that chronic Lyme does not exist, this is pretty much the position that one has to take. For whatever reason, that never makes the news; you never see a headline "Doctor Admits Illnesses of Unknown Origin Afflict Thousands", it's always essentially "Chronic Lyme Doesn't Exist And We Don't Know/Care What Else It Could Be."

Why is it that whenever I read these statements from Doctors and researchers who do not believe in chronic lyme, they never talk about co-infections. Nor do you guys. How come?

Ok, let's assume Lyme is easily killed. What about Babesia, Erlichia, Bartenella, H. Pylori, Mycoplasmas, and the viruses we all seem to have like EBV. Why are these never mentioned and therefore, I must assume never explored? Why doesn't anyone bring this to their attention? Why get stuck on Lyme?

This magical 2 week course of abx that cures Lyme, doesn't address the common coinfections at all and perhaps the persistent symptoms are being caused by the unaddressed coinfections.

Instead of calling it "Lyme Disease" let's call it "Persistent Microbial Infection Disease". Make them address more than just Lyme.

IMHO.

Luvs

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When the Power of Love overcomes the Love of Power, there will be Peace.

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AZN301
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What I cant understand is if short term antibiotics dont help and long term antibiotics dont help then what does? I think the focus shouldn't be on getting long term antibiotics that seem to eliminate some symptoms for a certain period of time only to relapse. It should be on a common research team made up of ilads and idsa scientist to find the root of the problem. If chronic lyme doesn't exsist then what is causing all of the lasting symptoms.

I know it is easier said than done but fighting over the same old topic gets nobody anywhere. We should pool our knowledge and maybe open our minds to what else could there be.

I know it is hard to do but even in my own case, sit there and listen to someone tell you they dont think you have lyme but maybe he is right. I just dont know.

Sorry about the rant just sick of dead ends.

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Michelle M
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quote:
Originally posted by luvs2ride:

This magical 2 week course of abx that cures Lyme, doesn't address the common coinfections at all and perhaps the persistent symptoms are being caused by the unaddressed coinfections.

Luvs

Excellent point, Luvs.

The reason they don't address it is that they never think of it, or if they do, they consider it "rare." And their response to it is 7 days of Mepron (per Blue Shield). (At least in the case of babesia, and then only if you're lucky enough to be blood positive.)

Michelle

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kam
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Give that man an infected tick for Christmas.

ON second thought...make it two or three.

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barksplinter
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To follow up on Michelle M's observation; If 200,000+ Lyme infected persons per year are not diagnosed... per CDC... is it not logical to then ASSUME these 200,000+ are NOT TREATED for a Lyme infection?

So WHAT IS IDSA's position for these 200,000+ per year of UNTREATED Lyme Infected? Do they just get better on their own? If so, then why is the 2 weeks of antibiotics such a big deal for any of the 20,000+ EARLY detected Lyme infected persons?

To say it another way; If treatment is not needed for the 200,000 that are not diagnosed ... what does it matter if another 20,000 (early diagnosed) are not treated? Why do we bother to even test for Lyme at all?

Does anyone ever pin them down on this?

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eliza85
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From Kam:

"Give that man an infected tick for Christmas.

ON second thought...make it two or three"

Yeah KAM that was going to be my thought.

It seems that not enough of these "Doctors" who say there isnt anything to do for Chronic Lyme Patients havent yet experienced the pleasure in muscle cramps, joint aches and pains, mood swings, swollen lymph nodes, and fatigue and that is just some of the milder symptoms.

But we enjoy this so much right??? YEah right..

Im not sure if all the states do this but Lyme is a reportable disease (to the DEpt of Health)in PA.

I spoke with a woman from the dept of health and asked why if this is such a concern that you have to call me and ask me questions

about how I got infected, when I noticed my first symptoms, what all my symptoms are and what kind of medicine I was getting to treat for this then:

WHY are there only a handful of doctors in the whole state who will actually treat you for the lyme?

And are at least successful enough in their attempt to treat lyme that they have people from 2 to 3 hours away coming to see them to get help.

Her reply: "Yes I know what your dealing with my husband also has it and we go see Dr J.

Most of the problem is a direct result from the Insurance Co. and just enough Doctor saying the wrong things".

I said "Wonderful while everyones playing games there are people out here who need a lot of help. Actual help not just to be some numbers on a clip board.

Beth

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Ann-OH
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Lyme disease is required to be reported to the CDC. The reports most often go through the state Dept. of Health.

Here is a list of reportable diseases:
http://www.cdc.gov/epo/dphsi/phs/infdis2007r.htm

and more info on the system of reporting diseases
http://www.cdc.gov/epo/dphsi/nndsshis.htm

In Ohio, reports go to the Vector-borne disease program of the Dept. of Health, which follows up on reports and then reports them to the CDC. They also have a lab, and do surveillance work.

Doctors don't report diseases, even childhood diseases, because they don't want to bother with the paperwork. Since there is no enforcement or penalties for not reporting, the whole system is a joke.

Ann - OH

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dmc
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Dr. F in the article is the one we protested at UCONN med. center.

He still has NOT given the greater hartford lyme group proof or the test that proves lyme is cured after even 6 weeks abx.

If you read comments to the article, the laypeople have more knowledge of the research that proves persistant Lyme.

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adamm
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Oh, he has PLENTY of knowledge of chronic Lyme; he didn't

get to where he is by being CLINICALLY RETARDED! The issue

here is that he's a sociopath...

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map1131
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All I want is just 60 minutes with this guy. Please!!!! I won't raise my voice, tear his head off or anything. I just want to do a debate and I can bet we would get enough points in to score in a challenge. Like a presidental debate.

Now I need a few team members? I feel like the cowardly Lion right now. Let me at him!! Come on!!!!

Pam

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