richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
I think not!
Someone with whom has been helpful during my time of illness is now starting to get under my skin. He continues to push the overdiagnosis of Lyme and that this is in my head - psychosomatic ala Dr. Sarno - burried emotions. I guess my tests that are strong positive for Babesia are fake too? Ticks me off! He is a good guy but I believe he is misguided. He says I should seek a second opnion from a lab that does not just do Lyme or TBDs. Basically, telling me labs such as IgeneX are only reporting high number of positives because they have something 'going' with Lyme docs. I don't buy it!
PATIENTS--All 788 patients referred to the clinic during a 4.5-year period who were thought by the referring physician or the patient to have a diagnosis of Lyme disease.
MAIN OUTCOME MEASUREMENTS--Symptoms and signs of disease, immunodiagnostic tests of Lyme disease, and tests of neurological function.
RESULTS--Of the 788 patients, 180 (23%) had active Lyme disease, usually arthritis, encephalopathy, or polyneuropathy. One hundred fifty-six patients (20%) had previous Lyme disease and another current illness, most commonly chronic fatigue syndrome or fibromyalgia; and in 49 patients, these symptoms began soon after objective manifestations of Lyme disease. The remaining 452 patients (57%) did not have Lyme disease. The majority of these patients also had the chronic fatigue syndrome or fibromyalgia; the others usually had rheumatic or neurological diseases. Of the patients who did not have Lyme disease, 45% had had positive serological test results for Lyme disease in other laboratories, but all were seronegative in our laboratory. Prior to referral, 409 of the 788 patients had been treated with antibiotic therapy. In 322 (79%) of these patients, the reason for lack of response was incorrect diagnosis.
CONCLUSIONS--Only a minority of the patients referred to the clinic met diagnostic criteria for Lyme disease. The most common reason for lack of response to antibiotic therapy was misdiagnosis.
From my friend: "with my past experience in the laboratory and medical fields, before I accepted a diagnosis of lyme disease, I would want a second opinion from a second lab that was known to be excellent and unbiased and did not earn a large amount of its income from just lyme disease or do large business with a doctor who had a large portion of his practice in lyme disease. One of the most shocking results above was that 45% of the patients had "positive" serology which could not be repeated in a reputable lab, and I really would like to know how that could be."
THOUGHTS?????
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
My thought is that the doctor who diagnosed me with Somatization Disorder let me get worse and considered a walk to the corner progress (I live on the corner).
The doctor who diagnosed and treated me for Lyme has gotten me so I can keep up with my teenagers and run circles around others my age.
If I'm just taking placebos, keep them coming as they're making me better.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
quote:Originally posted by sixgoofykids: My thought is that the doctor who diagnosed me with Somatization Disorder let me get worse and considered a walk to the corner progress (I live on the corner).
Sixkids,
Richie, that is the IDSA. They also believe that lyme is not a persistent infection, and the IDSA leaders ignore any evidence that does not fit with their theories about lyme.
Posts: 2557 | From home | Registered: Aug 2006
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quote:One hundred fifty-six patients (20%) had previous Lyme disease and another current illness, most commonly chronic fatigue syndrome or fibromyalgia; and in 49 patients, these symptoms began soon after objective manifestations of Lyme disease.
Ok, does anyone here have a frying pan or a two by four? These doctors and scientists sure need a wake up call.
Duh!!! being that the symptoms began AFTER manifestations of Lyme disease doesn't mean anything?
Why is it that the medical community blindly accepts a diagnosis of cronic fatigue and fibromyalgia over a REAL infection of bacteria?
CFS and fibro are not diseases, they are syndromes that needed a name because no explination could be found for their symptoms.
The great explination I keep hearing from these so called studies is that "If it can't be seen then it doesn't exist" LOL how many of them go to church?
Can CFS or Fibro. be seen under a microscope? No. but for some reason they say those do exist.
Sorry to vent like this here, I get easily steamed up sometimes.
proudmom Posts: 317 | From Kansas and New Jersey | Registered: May 2008
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
quack, quack....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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adamm
Unregistered
posted
This kind of propaganda has been responsible for, undoubtedly, millions of deaths.
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posted
I don't know about all 4 authors of that article, but the first one is Allen Caruthers Steere.
He was RHEUMATOLOGIST that the CDC sent to initially investigate the Old Lyme arthritis outbreak that Polly Murray had "discovered" in Connecticut.
He was determined to name a "new disease" and completely ignored all evidence of European cases with the same rash.
He initially thought that it was caused by a virus and so he recommended no antibiotics (even though in Europe, they thought it was a spirochete transmitted by a tick)
When he was finally proven wrong with the discovery of the spirochete borrelia burgdorferi, and he began to recommend 10 to 20 days of tetracycline.
This of course wasn't enough to cure people, so he shifted around his research "treatment success" definition so that it would appear most people were cured when they really weren't.
I would say he is still trying to "save face" and claim that most of us that are not cured in 10-20 days are overdiagnosed cases that are actually sick with something else!
If you haven't already, get a copy of "Cure Unknown" and let your friend borrow it. This guy hasn't been right about any aspect of lyme disease.
Anyone that needs to add to or correct what I have written, please do so.
quote:Originally posted by richedie: "...One of the most shocking results above was that 45% of the patients had "positive" serology which could not be repeated in a reputable lab, and I really would like to know how that could be."
The "reputable lab" which performed the overdiagnosis study failed to detect Lyme in a patient who tragically delivered a stillborn infant due to Lyme. Share this news with your friend:
"Postpartum studies yielded conflicting results because the Centers for Disease Control found strongly reactive results by IFA and ELISA, as did the New York State Department of Health; however, the Yale University laboratory of Dr. Allen Steere could detect no evidence of specific antibodies for B. burgdorferi. Fetal viscera showed B. burgdorferi in the liver, adrenal, brain, heart, and placenta. Spirochetes were seen by darkfield examination of fetal liver and these bound specific monoclonal antibody H5332."
How many patients in Steere's study had Lyme that couldn't be detected by his lab? We'll never know. That kind of underdiagnosis is a great danger. The fact that people are still quoting Steere's study as if his lab were infallible is what's shocking!
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
OVERdiagnosed????
Lyme disease is grossly UNDERdiagnosed.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
quote:Originally posted by disturbedme: OVERdiagnosed????
Lyme disease is grossly UNDERdiagnosed.
AGREE! This guy or friend has really made me
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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And HOW did they come to this conclusion? By a lousy lab ( like Quest, LabCorp...etc ) that couldn't find Lyme disease with a bullseye and all the symptoms if they tried!!
Hogwash.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
It's amazing how easily they can dismiss a lyme diagnosis yet settle on CFS when no one really knows what that means...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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blaze
Unregistered
posted
I just saw an Infectious Disease specialist on Thursday who assured me that he was a Lyme Disease expert.
Basically, he suggested that my problem was loneliness, not Lyme. Yea, whenever I need a little company, I just run and see an ID doctor.
With doctors who refuse to acknowledge Lyme, I guess so that I'd be lonely.
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posted
The study is grossly flawed -- I read a critique of that (and read the study itself) in , of all things, a handbook of psychology just this week.
Steere, himself, has publications acknowledging that seronegative and chronic lyme exist.
If your friend keeps talking like that, I'd break off the friendship, myself...
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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NanaDubo
Frequent Contributor (1K+ posts)
Member # 14794
posted
Unfortunately a lot of doctors and "friends" believe all of this. My grand-daughter who is waiting for Igenex test results (at my insistence) was taken to a pediatrician.
His comment was " Igenex? everyone who gets tested through them comes back positive."
He sent her right off to a neurologist. My poor daughter-in-law tried to explain to the neurologist that her mother-in-law (me) has done a lot of research and is going to Germany for treatment.
Neuro says "why in the world would she go to Germany for treatment when the US is where lyme disease is?"
Umm.....maybe because of doctors like that?
Don't mean to steal your thread but some of these guys and some so called friends, need an education.
Posts: 1129 | From Maine | Registered: Feb 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
You're friend is incorrect. Igenex is credible. They have their CLIA in nearly every single state, they are investigated and affiliated with CMS (Medicare), they have met special standards by the public health departments in MD, NY, FL, PA, CA etc, and they have the CAP participation.
Basically, someone should do their homework before saying foolish things. You can go to Igenex website and see the actual data by the state departments on the samples they took for every year back to around 2000.
Conclusion: Igenex "blind" accuracy rate, when investigated independently, was 96% over all. Some years they were 100%, some years, 98%.
At any rate, maybe you should show your friend this letter. Print it out.
tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
I'm sorry you have to plead your case to your friend. It's like we're all on trial.
I recently went through a similar situation w/my sister. She out of everyone close to me had the ability to help me out when I was at my worst and I really needed help as I was too sick to take care of my 1 year old. She's a stay at home mom that lives close by.
She told me the other day that she didn't help me b/c she was trying to motivate me and she made several comments implying it was all in my head. Things got really heated after that and we are not speaking.
The way I look at it is family or not, I don't need her. Isn't that what family is all about is to be there for each other and help each other out especially in times of need? Well, she wasn't there for me when I needed her most which tells me she won't be there for me in the future so I don't need her or want her.
Sorry to vent about this on your post! It's very frustrating that instead of your friend finding credible info about our disease, instead he stumbled upon this BS and now is convinced of it!
As if this disease isn't enough of a struggle for us we have to prove ourselves? I've spent a lot of time and energy researching our disease and it's so aggravating that those close to us don't make the effort and then when they do they find something that says Lyme is overdiagnosed and that we really have a waste basket diagnosis like CFS or Lyme which is cop-out for doctors b/c once they dx fibro or CFS they take it as a way out of looking for the real cause of illness. Ugh! I'm sorry your once supportive friend has chosen to believe that crap.
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