LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » "Chronic Lyme: Real or imaginary?" More IDSA Conflict of Interest!!

 - UBBFriend: Email this page to someone!    
Author Topic: "Chronic Lyme: Real or imaginary?" More IDSA Conflict of Interest!!
nenet
Frequent Contributor (1K+ posts)
Member # 13174

Icon 4 posted      Profile for nenet     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

(Photo courtesy of Dr. Robert C. Bransfield, MD, and Psychiatric Times.)

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.

Instead, the IDSA Lyme guidelines endorse an indirect antibody testing protocol that misses well over half the truly ill patients, and attributes ongoing Lyme disease symptoms to the ``aches and pains of daily living.''

At the 2008 American College of Rheumatology (ACR) Scientific Meeting, the IDSA Lyme Guidelines foot soldiers were out in force, armed with more ``evidence'' that chronic Lyme disease is an imaginary disease.

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.

-Both Orencia and Abilify have recently received approval for use on children, and Bristol-Myers Squibb recently donated $5 million to the Bristol-Myers Squibb Children's Hospital at Robert Wood Johnson University Hospital (RWJUH) to create three new clinical centers, including a new center for the treatment of Rheumatic Diseases in Children.

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.)

Because these types of conflicts muddy the evidence-based medicine waters, we applaud Connecticut Attorney General's efforts to remove conflicted panelists from the new IDSA Lyme Guidelines writing committee.

Based on our research in the film, we tend to support this take on chronic Lyme disease, by Stricker et. al in Future Microbiology:

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)

[ 03-13-2009, 12:24 PM: Message edited by: nenet ]

--------------------
Dr. C's Western Blot Explanation

Lymenet Success Stories

ILADS Treatment Guidelines

Medical & Scientific Literature on Lyme

"Long-Term Antibiotic Therapy Improves Persistent Symptoms Associated with Lyme Disease"

Posts: 1176 | From KY | Registered: Sep 2007  |  IP: Logged | Report this post to a Moderator
nenet
Frequent Contributor (1K+ posts)
Member # 13174

Icon 1 posted      Profile for nenet     Send New Private Message       Edit/Delete Post   Reply With Quote 
bump

- this is a really well-done and important blog from Under Our Skin, so I hope more people will have a chance to read it or respond.

--------------------
Dr. C's Western Blot Explanation

Lymenet Success Stories

ILADS Treatment Guidelines

Medical & Scientific Literature on Lyme

"Long-Term Antibiotic Therapy Improves Persistent Symptoms Associated with Lyme Disease"

Posts: 1176 | From KY | Registered: Sep 2007  |  IP: Logged | Report this post to a Moderator
kreynolds
Frequent Contributor (1K+ posts)
Member # 15117

Icon 1 posted      Profile for kreynolds     Send New Private Message       Edit/Delete Post   Reply With Quote 
All I can say is wow! I had a SPECT scan done at Columbia about 8 months ago.

It came back moderate-severe hypoperfusion in the prodamenatley in the watershed areas.

You'll have to excuse my spelling on those couple of words.

I wish I had a Picture like that to see what my brain looked like!

Very nice and thanks for sharing!

[ 03-10-2009, 10:44 PM: Message edited by: Kreynolds ]

--------------------
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  |  IP: Logged | Report this post to a Moderator
adamm
Unregistered


Icon 1 posted            Edit/Delete Post   Reply With Quote 
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.

IP: Logged | Report this post to a Moderator
seibertneurolyme
Frequent Contributor (5K+ posts)
Member # 6416

Icon 1 posted      Profile for seibertneurolyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
kreynolds
Frequent Contributor (1K+ posts)
Member # 15117

Icon 1 posted      Profile for kreynolds     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
nenet
Frequent Contributor (1K+ posts)
Member # 13174

Icon 1 posted      Profile for nenet     Send New Private Message       Edit/Delete Post   Reply With Quote 
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!

[ 03-12-2009, 01:06 PM: Message edited by: nenet ]

--------------------
Dr. C's Western Blot Explanation

Lymenet Success Stories

ILADS Treatment Guidelines

Medical & Scientific Literature on Lyme

"Long-Term Antibiotic Therapy Improves Persistent Symptoms Associated with Lyme Disease"

Posts: 1176 | From KY | Registered: Sep 2007  |  IP: Logged | Report this post to a Moderator
nenet
Frequent Contributor (1K+ posts)
Member # 13174

Icon 1 posted      Profile for nenet     Send New Private Message       Edit/Delete Post   Reply With Quote 
I've removed bold text for those that might not have been able to read this before because of it. Sorry betty and others!

--------------------
Dr. C's Western Blot Explanation

Lymenet Success Stories

ILADS Treatment Guidelines

Medical & Scientific Literature on Lyme

"Long-Term Antibiotic Therapy Improves Persistent Symptoms Associated with Lyme Disease"

Posts: 1176 | From KY | Registered: Sep 2007  |  IP: Logged | Report this post to a Moderator
'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189

Icon 1 posted      Profile for 'Kete-tracker     Send New Private Message       Edit/Delete Post   Reply With Quote 
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 [Frown] What Other drugs are in this class...that are in common use??

(Those brains shrank 10%?? [Embarrassed] Over what period? Who's study??)

Posts: 1233 | From Dover, NH | Registered: Sep 2008  |  IP: Logged | Report this post to a Moderator
MY3BOYS
LymeNet Contributor
Member # 17830

Icon 1 posted      Profile for MY3BOYS     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
adamm
Unregistered


Icon 1 posted            Edit/Delete Post   Reply With Quote 
http://www.nature.com/npp/journal/v30/n9/full/1300710a.html

http://www.mindfreedom.org/kb/psychiatric-drugs/antipsychotics/neuroleptic-brain-damage/mosher-bibliography/

http://psychrights.org/research/Digest/Chronicity/progressive.pdf

http://100777.com/node/1341

Seems like they can do even more damage than Lyme...

IP: Logged | Report this post to a Moderator
bettyg
Unregistered


Icon 1 posted            Edit/Delete Post   Reply With Quote 
thank you nenet xoxox
IP: Logged | Report this post to a Moderator
jtavares76
Member
Member # 19216

Icon 1 posted      Profile for jtavares76     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
luvdogs
LymeNet Contributor
Member # 9507

Icon 1 posted      Profile for luvdogs     Send New Private Message       Edit/Delete Post   Reply With Quote 
Nenet - this is great info. Thanks! It does help to explain some things....
Posts: 588 | From Rhode Island | Registered: Jun 2006  |  IP: Logged | Report this post to a Moderator
nomoremuscles
LymeNet Contributor
Member # 9560

Icon 1 posted      Profile for nomoremuscles     Send New Private Message       Edit/Delete Post   Reply With Quote 
It can't be imaginary, because, along with most executive function, my imagination is gone.
Posts: 845 | From Eastern USA | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
nenet
Frequent Contributor (1K+ posts)
Member # 13174

Icon 1 posted      Profile for nenet     Send New Private Message       Edit/Delete Post   Reply With Quote 
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. C's Western Blot Explanation

Lymenet Success Stories

ILADS Treatment Guidelines

Medical & Scientific Literature on Lyme

"Long-Term Antibiotic Therapy Improves Persistent Symptoms Associated with Lyme Disease"

Posts: 1176 | From KY | Registered: Sep 2007  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


Icon 1 posted            Edit/Delete Post   Reply With Quote 
quoting 1st article above...


--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.

IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code� is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.