Topic: "Chronic Lyme: Real or imaginary?" More IDSA Conflict of Interest!!
nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Copying here to break up for those that have Neurological Lyme. Original blog article posted by Kris here: http://underourskin.com/blog/?p=137
"One of the more surprising observations made while filming Lyme sufferers for UNDER OUR SKIN, was that almost all had been misdiagnosed as having ``hypochondriasis,'' or, ``it's all in your head'' syndrome before receiving a Lyme diagnosis.
The SPECT scan above shows the brain of a Lyme patient before and after treatment with IV antibiotics. The healthy orange areas of the brain are receiving adequate blood flow. The black and blue areas are starved for oxygen due to inflammation caused by the Lyme bacteria.
A person with that much of their brain out of commission may exhibit any number of neurological symptoms, including depression, rages, seizures, and even hallucinations.
Though it's fairly obvious that this brain is impaired, SPECT scans are not mentioned as a diagnostic tool in the latest Infectious Disease Society of America (IDSA) Lyme disease guidelines, despite a number of promising studies out of Columbia University.
Among the presenters was Leonard Sigal, M.D, R&D Director of Immunology at Bristol-Myer Squibb, and a contributor to both the 2000 and 2006 IDSA Lyme Guidelines. Calling ongoing Lyme symptoms, ``Post Lyme Disease Syndrome'' or PLDS,
Sigal's poster presentation said:
quote:
``After adequate antibiotic treatment, very rarely do patients continue to manifest objective evidence of ongoing infection, yet it has been estimated that over one third of Lyme disease patients report chronic physical, cognitive, and psychiatric symptoms or PLDS. There is no evidence that PLDS patients have ongoing infection with B. burgdorferi.''
``Close to 45% of patients with Lyme disease will manifest the chronic symptoms characteristic of PLDS.''
``Further, psychological factors such as depression and maladaptive belief systems could be significant risk factors for PLDS''
. . The problem with this study is the potential for bias. Isn't it possible that these patients are suffering from treatment failure due to inadequate doses of antibiotics? Is Dr. Sigal really qualified to diagnosis these patients with a ``maladaptive belief system,'' when he is not a psychiatrist--he's a rheumatologist? And what about his affiliation with Bristol-Myer Squibbs?
Though Sigal's studies are cited 5 times in the 2006 IDSA Lyme guidelines, and he's listed as a reviewer, nowhere is it mentioned that:
-Sigal's employer, Bristol-Myers Squibb (BMS), sells two blockbuster drugs Orencia ($129M in 2008), which treats rheumatoid arthritis and potentially Lupus, and Abilify ($606M in 2008) which treats depression. Many sufferers with late-stage, undertreated Lyme disease exhibit joint pain and depression, and are misdiagnosed with these syndromes of unknown cause.
As the former chief of the Rheumatology at RWJUH, Sigal is a volunteer lecturer at the RWJ medical school, and he publishes jointly with his former collegues at this medical school.
--Dr. Sigal is a reviewer of insurance case files for Prudential, Aetna, Anthem, MetLife, Metro Health, and BCBS. He typically earns over $500 per hour as an insurance expert witness in workers compensation cases that involve Lyme disease."
Could these commercial interests, which are not disclosed in the IDSA guidelines, create bias among front-line physicians, in diagnosing hypochondria, RA, or depression over chronic Lyme disease? Maybe. (For more on the influence of pharmaceutical companies on prestigious academic medical centers, see the ``Harvard Medical School in Ethics Quandary" article in the New York Times.)
quote: ``...there is growing scientific evidence that chronic Lyme disease does exist, and that this clinical condition is related to persistent infection with B. burgdorferi as shown by microbiological and molecular studies.
Persistent infection occurs in animal models and humans because the Lyme spirochete is able to evade both the host immune response and short-course antibiotic therapy to establish chronic infection in protected tissue sites, much like TB.
This chronic infection leads to persistent musculoskeletal, neurologic and cardiac symptoms that are the hallmark of chronic Lyme disease. By contrast, the leading theory for persistent symptoms owing to `post-Lyme syndrome', namely an autoimmune response triggered by the eradicated spirochetal infection, has not been supported by scientific evidence.''
For more on Chronic Lyme, see the video clip, `` Patients Abandoned,'' on the UNDER OUR SKIN site.
(edited to add the many links to references from the original great post by Kris. Please visit the original blog where you can add comments under the article)
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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adamm
Unregistered
posted
One big-time error, though:
Abilify is not an antidepressant. It's an antipsychotic known to be extremely neurotoxic. My goodness this is sad: drugs in this class shrank monkey brains by 10% in one study, but they've been misrepresented so effectively that even the folks who'd normally be more attuned to this sort of thing, like the Under Our Skin producers, are getting it wrong.
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posted
Kreynolds -- You should be able to get a color photo of your SPECT from Columbia. Hubby paid for and got his copies on the day he got the exam done back in June 2007 -- I think it ended up costing about $50 but well worth it in my opinion. There should be some reference numbers on your report they can use to access the copies.
We could tell just from looking at the photos that the test would be abnormal before we even got the report.
nenet -- Thanks for posting.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
seibertnuerolyme:
Thanks for the info, will look into it!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
quote:Originally posted by adamm: One big-time error, though:
Abilify is not an antidepressant. It's an antipsychotic known to be extremely neurotoxic. My goodness this is sad: drugs in this class shrank monkey brains by 10% in one study, but they've been misrepresented so effectively that even the folks who'd normally be more attuned to this sort of thing, like the Under Our Skin producers, are getting it wrong.
Thanks for your reply adamm, and for the information! That is some seriously disturbing info about that drug, and about the industry, that they would bring it to market and that it would be approved. Not surprising, but disturbing.
I was also under the mistaken impression that Abilify was an antidepressant, from seeing the advertisements for it. I just looked it up and the manufacturer seems to be marketing it as an "Add-on" for people with "major depression" or "Major Depressive Disorder", I guess as some form of "helper" for antidepressants to work better in that disorder.
Maybe they were referencing this use in the blog, but I agree it is definitely a bit murky, since it is not a standalone treatment for depression.
Beyond that, the fact that this man was part of Lyme guidelines at all, with these personal interests, just blows me away!
'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
Adamm: I am VERY interested in reading any & ALL "real" studies on the drug 'Abilify'. My younger bro is on it, out there in CA, & has been for a year, maybe a bit longer.
He is 'border-line schizophrenic' & it does really seem to help him. But I always worry about dosing with a single pharmaceutical company's test-tube synthesized SINGLE MOLECULE.
Life is not made up of single compounds. You put one in & you create some more, & suppress others.
It's a F&^d up system that provides us with "nice" medicines What Other drugs are in this class...that are in common use??
(Those brains shrank 10%?? Over what period? Who's study??)
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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posted
abilify-- pls do your homework. this is a heavy
hitter, relativly new. is used in conjuction esp
for bi-polar, schizophenia. when used in adult
depression- this is when other frontline meds
have not worked. for most docs anyway. pls always educated yourself on what meds ur on!!! drugs.com and rxlist.com are good sites
seems like there are quite a few of us on here who are nurses as well.
very interesting info on post!! thanx!!
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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posted
Just a word on abilify...even though it is being marketed as safe...it can cause a whole plethora of side effects.
Some of these side effects are irreversible such as tardendyskinesia (sp?). A student I worked with now has irreversible uncontrolled body jerks and movements from this drug.
Even though everyone reacts differently to medications, individuals considering abilify should do so with extreme caution.
JT
Posts: 72 | From Massachusetts | Registered: Feb 2009
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Nenet - this is great info. Thanks! It does help to explain some things....
Posts: 588 | From Rhode Island | Registered: Jun 2006
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posted
It can't be imaginary, because, along with most executive function, my imagination is gone.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
nomoremuscles, you cracked me up - I have the exact same problem, I've lost my imagination, decision-making, and ability to think... (wow I can't think of the word), oh, to think abstractly.
I'm glad others are getting a chance to see this. Under Our Skin has great blog articles frequently, and I wanted to make sure those that can't read large blocks of text would have a chance to see this as well.
I updated my original post to copy all of the blog for Neuro-Lyme sufferers (broke it up into small sections) and added all of Kris's wonderful links to references from their original blog.
--Dr. Sigal is a reviewer of insurance case files for Prudential, Aetna, Anthem, MetLife, Metro Health, and BCBS.
He typically earns over $500 per hour as an insurance expert witness in workers compensation cases that involve Lyme disease." ........
sigal...i just read alot about him in pj's book THE BAKER'S DOZEN.
if i remember right, he was NEVER TRAININED AS INFECTIOUS DISEASE DR. yet he gets paid for workers comp claims and possibly in COURT? can't remember without going page to the pages.
pj has shown articles, resources, and where she got every public site where this was accessible.
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