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» LymeNet Flash » Questions and Discussion » Medical Questions » Psychology Today Blog: Neurological Lyme, Part One

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Author Topic: Psychology Today Blog: Neurological Lyme, Part One
Pam Weintraub
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Psychology Today Blog: Neurological Lyme, Part One

http://blogs.psychologytoday.com/blog/emerging-diseases/200812/neurological-lyme-disease-can-be-a-shadowland-the-mind-part-one

--------------------
Pam Weintraub
Cure Unknown
http://www.cureunknown.com

Posts: 66 | From Connecticut | Registered: Jun 2008  |  IP: Logged | Report this post to a Moderator
bettyg
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pam,

didn't kam post and break up ALL 3 SECTIONS of your posts? where are those posted? confusing to me...

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Pam Weintraub
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Betty --I post new posts every week, and this is a new post. I put it in medicine because this is a medical issue. Please feel free to organize however you deem most appropriate. Pam

--------------------
Pam Weintraub
Cure Unknown
http://www.cureunknown.com

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bpeck
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Yes. I had (maybe still have) neuro Lyme. That shooting pain was un bearable- as was the burning pain and other odd high level pain I had (that at the time the Docs had no clue what was going on with me.).

I know this pain.

It's nice that someone is finally writing about Lyme in an intelligent way, and I hope that within my life time, the main stream medical establishment will stop underestimating this bug.

Time will tell.

Good article Pam,
Barb (VT)


QUOTE FROM ARTICLE:
At Stony Brook, meanwhile, the neurologist John Halperin studied a far less devastating but more common "peripheral neuropathy," a
kind of numbness or "pins and needles" feeling in the extremities. Could the intermittent numbness and tingling in one patient's fingers derive from the same dysfunction as the stabbing pain in another patient's torso and legs? By 1990, using the tool of electromyography (EMG) to study nerve cells, Halperin found that these symptoms, though diverse, were all due to the same thing: damaged nerve cells and, more specifically, abnormalities in the axon, the long, slender part of the cell that propagates nerve impulses along. The neurons were being "picked off" one at a time, in scattered clumps, as if snipers were at work. If the disease took out a big chunk in one place, you might get shooting pain. If it took out tiny, scattered groups of nerves you could get numbness in the toes or a weakness when you walked. Halperin's study, published in the journal Brain, concluded that the underlying pattern of nerve cell abnormality was the same no matter what the complaint. "All of them really had the same disease," he said. "It was just variations on a theme."
END QUOTE

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bettyg
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pam,

my apologies to you; i didn't know it was new and thought it was a REPEAT that kam had posted elsewhere.

thanks for clarification!! medical is perfect [Smile]

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ticked-offinNc
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thank you for posting this Pam. [Smile] And thank you for all you do!
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Cass A
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Dear Pam,

Thanks so very much for getting this published in a Psychology Today site!

It is soooooo very important for people with psychiatric "problems" to be given a searching clinical physical examination to discover the underlying physical disease behind their "psychosis."

Your contribution to raising the issue of physical disease is very much needed and wanted!!

Please keep it up! If you can get into the hard-copy Psychology Today, that would be wonderful! Would people leaving comments at the Psychology Today site help to make that happen??

Best,

Cass A

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bettyg
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copying this here and breaking up for us neuros to be able to comprehend/read [Smile] betty


i moved my BROKEN VERSION to pam's blog on this subject; so please go there and BE COUNTED AS SOMEONE WHO CLICKS ON HER WORK TO KEEP IT IN TOP 5 FOR NATIONWIDE PSYCHOLOGISTS TO READ!!!
**************************************


ALSO, please give pam/psychologists YOUR lyme feedback!! ********************************

WE CAN EDUCATE THEM [Smile] give it a chance ok!


http://blogs.psychologytoday.com/blog/emerging-diseases/200812/shadowland-the-mind-neurological-lyme-disease-part-one/comments


Neurological Lyme Disease Can Be a Shadowland of the Mind,

part one

By Pamela Weintraub
on December 30, 2008 in Emerging Diseases

************ 2 comments ********

Neuro Lyme
Submitted by Barb Peck

on December 30, 2008 - 6:43pm.

Yes. I had (maybe still have) neuro Lyme. That shooting pain was un bearable- as was the burning pain and other odd high level pain I had that would wax and wane like voodoo ( at the time the Docs had no clue what was going on with me.).

I know this pain. Glad it's gone.

FINALLY- someone writing about Lyme in an intelligent way. I hope that within my life time, the main stream medical establishment will stop underestimating this bug.

Time will tell.

Excellent Article,
Barb (VT)

QUOTE FROM ARTICLE:

At Stony Brook, meanwhile, the neurologist John Halperin studied a far less devastating but more common "peripheral neuropathy," a kind of numbness or "pins and needles" feeling in the extremities.

Could the intermittent numbness and tingling in one patient's fingers derive from the same dysfunction as the stabbing pain in another patient's torso and legs?

By 1990, using the tool of electromyography (EMG) to study nerve cells, Halperin found that these symptoms, though diverse, were all due to the same thing: damaged nerve cells and, more specifically, abnormalities in the axon, the long, slender part of the cell that propagates nerve impulses along.

The neurons were being "picked off" one at a time, in scattered clumps, as if snipers were at work. If the disease took out a big chunk in one place, you might get shooting pain.

If it took out tiny, scattered groups of nerves you could get numbness in the toes or a weakness when you walked.


Halperin's study, published in the journal Brain, concluded that the underlying pattern of nerve cell abnormality was the same no matter what the complaint.

"All of them really had the same disease," he said. "It was just variations on a theme."
END QUOTE
---------------------------------

Weintraub writes with perfect pitch
Submitted by Lynn Shepler MD JD

on December 30, 2008 - 11:58pm.

I am in agreement with the first commentator --- yes, it's time that we had someone write intelligently about Lyme disease!.

And Pamela Weintraub has done so at great personal cost to herself.

The truth about this disease has been muzzled for too long by those with commercial interests in this disease (I speak here, for example, of the "thought leaders" who make up the members of the IDSA guidelines panel).

These guidelines by IDSA and other tainted publications written by these Lyme "researchers" have made it almost impossible for ill patients to receive care--- and if they find care, they typically must travel miles to "Lyme-literate" MDs.

(Even as a physician, I myself cannot find care in my home town of over a million people, but travel approximately 1000 miles up the coast by car to see a Lyme practitioner. It is a great hardship, particularly when one feels ill to begin with. When will this discrimination against Lyme disease patients stop?)


Another important issue --- where is the research on this disease?

There is no argument that Federal research dollars allocated for this disease have been squandered.

Even the discover of the organism that causes Lyme disease, Willy Burgdorfer, PhD, of the NIH Rocky Mountain Labs agrees on this, and remarked upon this in a documentary about Lyme disease entitled, "Under Our Skin" (www.underourskin.com)


Lyme and HIV were discovered around the same time, yet no progress has been made in treating Lyme disease patients who suffer from the chronic or relapsing symptoms, nor has there been any progress in treating the co-infections that may occur along with the Lyme disease.


Outrageous but true ---Individuals sick with this disease are not offered any treatment protocols that differ from what was offered in the early 1980's.

A bottle of antibiotics --- that's it!.

That's all that keeps me from relapsing further into this neurodegenerative nightmare.


Unfortunately, they do not cure. Some people, perhaps -- but not me. I was diagnosed too late, after the organism had disseminated throughout my body.

The "thought leaders" seek only the golden fleece for BigPharma and the fame that would come with inventing a Lyme vaccine.

(For the record, no vaccine has been succesfully devised against this type of organism - a spirochete.)


But in order to conduct Lyme disease vaccine clinical trials, the scientific problems surrounding chronic infection must be solved.


Instead of digging in and solving these problems, the "scientists" bully and intimidate others on their way to the billions of dollars that a successful Lyme disease vaccine would bring.

The behavior is very rough primitive behavior - like pigs at the trough.

Threats, innuendo, lies, deceit.

Caring little about patients or their practitioner colleagues.

In service of their goal of a vaccine, and caring nothing about patients or their medical colleagues who disagree with the business model of the disease, they have made Lyme sufferers and their doctors the laughingstock of the medical community --- pariahs.

Instead of solving the difficult problem of chronic infection --- they instead elect to simply tell the biggest lie one might make about the disease.

Say that chronic infection doesn't exist. Say it loud and long enough, and, most will believe it.

In American society, it doesn't hurt, either, that individuals have been taught to trust doctors.


Society has yet to learn that academic medicine has changed and these people are not the tweedy learned and underpaid individuals that once existed in these places.


(One wonders, though, why anyone would need a vaccine for a disease that is easy to treat, easy to diagnose, causes no long term infection or sequelae.)

Never did I think that my career, hopes and dreams would be side-railed in such a bizarre fashion - it is bad enough to have the disease, but those of us who suffer from the disease must also cope with the victimization we experience by this academic clique of doctors involved with BigPharma.

Doctors so high in the medical hierarchy, they cannot see those of us on the bottom whose lives they are destroying.


Academic-affiliated doctors who misrepresent the truth about the disease to their physician colleagues (the "practitioners'),

ignore the burgeoning global medical literature demonstrating the truth of chronic, relapsing infection,

and who trip over themselves publishing papers that limit patients' access to medical care,

we well as health and disability benefits --- all the while, never disclosing the true level of their involvement with pharmaceutical interests,

their own individual financial interests (patents, consulting for insurance companies to deny benefits to patients, etc.) -----

and, of course, never explaining to practitioners or to the public the implications of these ties for the business model of the disease that they have drawn up and falsely represented to be the real model of the disease.


When will it stop?

Perhaps President-elect Obama and his team will learn of the problems and intervene. Neither President Bush nor members of Congress worked on constructing a meaningful oversight process to govern physicians' conflicts of interest.


To his credit, the Connecticut Attorney General, Richard Blumenthal took early first steps in declaring the IDSA Lyme disease guidelines in violation of U.S. antitrust law for the organization's exclusion of physicians from the guidelines panel (in this case, it's own members) holding contrary points of view.


IDSA was also found to have violated its own rules governing the writing of guidelines.

The upshot of Blumenthal's investigation was that IDSA agreed to reconstitute the guidelines panel with the help of an ombudsperson, and to make sure that the guidelines examined all the relevant medical literature concerning the disease.

IDSA's response has been dilatory.

America is full of extremes these days. Extremes of wealth and poverty.


We know that under the Bush administration, these disparities widened. Those who have, next to the have nots.

The Ivy educated, next to those with sixth-grade reading skills. Residents of palatial addresses living subway stops from the homeless The juxtapositions scarcely startle and seem to raise few questions in daily life about social justice.

The prevailing question has been principally about how to get more.


I am a physician with medical insurance and some savings, who finds that she cannot receive medical care in her home town of over 1 million people, for a disease that is endemic in her country (Lyme is not an exotic disease).


Only by driving 1000 miles and knowing what door to knock on can she get care.

The last doctor I saw in this town gave me the name of a practitioner on Fifth Avenue in New York, and to go there.

He didn't have the guts to call up the Infectious Diseases doctor he had referred me to and ask why he refused to accept me as a patient.

And, I know of approximately 60 other patients here who also cannot get medical care in this town, and are forced, in their ill state, to travel for medical care --- as though this is a third world country.

We patients with Lyme disease live in a medical ghetto created by the physicians with financial interests in this disease What is wrong with this picture?


Thank you Pamela. For so long people like myself waited and yearned for your book.

I buy copies, give them to friends, to writers, doctors, politicians.

The book speaks truth to power -- the reason it is now in its second printing. I encourage all to read it! And thanks to all who helped Ms. Weintraub in her difficult journey. It's not an assignment any journalist would choose.

reply
*******************

pam, excellent article; i really enjoyed it and your 2 replies especially the one from the dr. who couldn't get help either! [group hug] [kiss]


pam, would you add something at the beginning of your TEXT above, that i copied it here and broke it up for neuros who'd like to enjoy reading it too?

just click on pencil and it will let you add comments to text area and/or subject line. thanks! [bonk] [bow]

[ 07. January 2009, 01:24 AM: Message edited by: bettyg ]

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Shadowlands ..... COMMENT NO. 3

Submitted by Jenna Smith
on December 31, 2008 - 1:06pm.

Excellent article! Keep up the wonderful reporting...it keeps me hoping that my neuro-lyme will one day be a distant memory!

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