Emerging Diseases

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
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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 lost 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.

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

I concur that lyme can mimic ALS, sometimes after many years of other kinds of lyme symptoms. Those people who die faster with aggressive lyme treatment for ALS/Lyme appear to get worse in conjunction with a herxheimer reaction, as I did. Someone needs to be researching the cytokines and other immune system reactions in lyme treatment.

Lower doses of IV drugs can stabilize this segment, but may not bring remission. It is a catch 22 situation, if higher doses are needed to kill spirochetes, but the immune reaction itself can then hasten death.

The puzzling aspect is that higher doses help some ALS/Lyme patients, but not others. Why would this be happening?

Thank you Pam for your outstanding book.

Having suffered with Lyme Arthritis for 5 1/2 years and being diagnosed and treated the last 2 years I was astounded to read of the lack of medical care in UK due to our HPA following IDSA restrictive guidelines.
I was fortunate having a GP who suspected Lyme and after seeing a LLMD in Cardiff, she has continued to treat me.

Reading Pam's book has helped me to understand much about the politics of this awful, painful condition. It seems just as you get excited about some improvements it creeps up and starts in yet another area.

I have now met several people in my local area all suffering with Lyme.

Sadly last summer a 70 year old man went into his garden during the night and doused himself with petrol and set fire to it. He died the next day. The autopsy report was in our local paper and I spoke to his widow. He had been diagnosed with Lyme and amongst other symptoms he suffered with delusions and confusion. They had been to see many doctors and consultants and inspite of showing them ILADS guidelines none were prepared to treat on more than a short course of antibiotics. Such a sad waste of a life just for the sake of adequate treatment.

I hope that by submitting articles such as Pam's to our media in UK we will eventually get some recognition and support against the injustices we are subject to.

I am now on my 3rd reading of this fascinating book and have sent copies to my MP and GP.

Questions are being asked in parliament not only in USA and Canada but also in UK, we can not be ignored for ever. The illness is not going away but my biggest worry is not just those who suffer unknowingly of the cause but the children who are not being diagnosed and find it more difficult being treated because there are even fewer LLMD's able to treat.

Shame on those in power who are abusing it for there own personal gain, when there is so much good research available that supports ILADS guidelines.

Joanne Drayson
Guildford Surrey UK

copying this here and breaking up for us neuros to be able to comprehend/read.

to all the psychologists who happens to read this, we NEURO CHRONIC LYME patients can NOT read long, solid block text! we need things in short sentences like below to be able to comprehend and read.

in fact, i have this request to make of you psychologists, etc. who write or publish papers ... PLEASE USE ARIAL, size 12-14, for us LOW vision folks!! A heartfelt thank you ALL for listening to my request!! xox

Do NOT use timesnewroman as it runsallwordstogether likethis forme/others! we can enlarge the print but we can't change the font without ADDITIONAL mental work on copying to ms word, etc!

i've had chronic lyme 40 years this christmas season! traced the tick back to a live tick off my folk's like christmas tree! never saw it; never had bulls-eye rash; but kept diary from 13 on which proved useful. i was 21 at time; my roommate and i didn't have pets and NO sub-zero gardening or "normal" ways of being bitten by ticks!

bettyg, iowa lyme activist

Neurological Lyme Disease Can Be a Shadowland of the Mind,

part one

By Pamela Weintraub
on December 30, 2008 in Emerging Diseases

The first time I met a group of severely disabled Lyme disease patients I spent hours listening to their stories, some of them heartbreaking, and mourned, with them, their lives of frustration and pain.

A month later, when I met the same patients again, several could not recall me. At first I was insulted. Had I been that forgettable, my empathy that banal?

Then I realized something I had never fully grasped despite my research, despite my own Lyme disease.

Unless you have personally encountered the shadowland of the most afflicted patients-a world eclipsed by strange lapses of memory, broken speech, and the struggle to follow the simplest train of thought - you cannot begin to fathom the dense, disabling fog that may accompany the disease.

To this day, popular perception holds that Lyme disease is an affliction of knees, characterized by swollen joints and an inability to serve in tennis or descend a flight of stairs.

Musculoskeletal symptoms can be a hallmark of Lyme disease, but the early rheumatologists had recognized just one part of the elephant - it would take more time, and a broad array of specialists, for the widening picture to emerge.

Some of those early patients, selected for studies because of their remitting-relapsing arthritis, recalled the appearance of an expanding red rash before the arthritis had begun.

Taking the cue, the Yale scientists looked for patients with the rash-early Lyme-and began studying them prospectively, at the true onset of disease.

They found that only some patients went on to develop arthritis.

In others, the rash gave way to headaches and stiff necks (meningitis); facial drooping, choking, or visual loss like I suffered (attack of the cranial nerves); or terrible shooting pains throughout the torso and limbs.

When these devastating signs appeared together, often the diagnosis was Lyme.

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."

Other times Lyme caused psychiatric disease. One of the first to have this insight was Andrew Pachner, a Yale neurologist who moonlighted
at psychiatric hospitals.

On one such gig he was asked to evaluate a twelve-year-old boy who, prior to admission, had pedaled his stationary bicycle barely stopping to sleep or eat.

Before the start of this behavior, the boy had been an excellent, hardworking student with a talent for soccer.

But his soccer days were disrupted when he developed painful, swollen knees and was diagnosed with Lyme arthritis.

The child was treated with doxycycline and seemed to get well. When his obsessive pedaling began some years later, his prior Lyme disease was already a distant memory, and no one saw the relationship between the two.

Except for Pachner:

Given what he knew about syphilis, he wondered whether Lyme disease and the obsessive cycling might be linked.

In a leap of insight, he moved the boy to Yale and infused him with penicillin for fourteen days. It was like a miracle.

Literally within days the child started to improve, interacting with staff and eating food. Two weeks later he returned home and went back to school.

When Pachner saw him a few months after that he had even returned to soccer. He seemed cured.

In 1989, writing for the Archives of Neurology, Andrew Pachner, by then at the Georgetown University School of Medicine, described six cases of central nervous system Lyme disease, of which his "bicycle boy" was just one.

Another patient, a twenty-one-year-old man, had violent outbursts and wild laughing, attributed to a herpes virus thought to infect his brain.

But he tested positive for Lyme disease and, treated with antibiotics, was finally cured.

A six-year-old girl, so afflicted with vertigo that she staggered, tested positive for Lyme and was treated; she, too, got well.

The German neurologist Rudolph Ackermann found that the sickest of these neuroborreliosis patients suffered an inflammation of the brain
and spinal cord called encephalomyelitis, also seen in syphilis.

When the condition involved the spine it resembled multiple sclerosis and when it involved the brain, particularly the cerebral cortex, it could produce psychoses or seizures.

The condition was progressive and degenerative
without treatment, but even after antibiotic therapy, most of the patients retained the symptoms, though to a lesser degree.

From the devastating syndrome described by Ackermann to the odd presentations reported by Pachner, neuroborreliosis appeared almost
protean, and, like syphilis, could be mistaken for a host of other ills.

Syphilis had long been known as "the great imitator" among doctors.

Now Pachner declared that Lyme disease was "the new great imitator."

His statement seemed to unleash a torrent of bizarre reports flowing into the medical journals.

A group from Stanford described a twentyfive-year-old woman with hallucinations, hypersexuality, nightmares, and a rash.

Scientists from Germany found Lyme could cause Tourette's syndrome, catatonia, and even schizophrenia.

Several teams have reported Lyme disease masquerading as-or even triggering-Parkinson's disease.

And in what would be a breakthrough of enormous scope-if borne out in other studies-neuropathologist Judit Miklossy of the University of Lausanne in Switzerland reported that she had isolated spirochetes from the blood, cerebrospinal fluid, and brain tissue of fourteen Alzheimer's patients upon autopsy.

More than two dozen published papers associate neuroborreliosis with stroke, and others document that Lyme disease may cause seizures.

Perhaps most tantalizing is the work done on ALS.

In 1987, for instance, a Wisconsin team found that four of fifty-four patients diagnosed with ALS also tested positive for Lyme disease-and since ALS is fatal, decided that treatment with antibiotics wouldn't hurt.

Following the treatment, one of the four patients was stabilized, the progression of her symptoms halted for good.

Intrigued by the report, Halperin did a formal follow-up, testing nineteen ALS patients from the hyperendemic area of Suffolk County, New York.

Of these, nine had Lyme antibodies and the Stony Brook doctors, like their Wisconsin colleagues, treated them with antibiotics.

Three patients, those with abnormalities primarily in the lower part of the body, improved.

But three of the sickest patients declined dramatically following treatment, which seemed to hasten their death.

Though the Stony Brook scientists couldn't say for sure what was going on, they affirmed the statistical significance between ALS and Lyme disease, and theorized that in those who deteriorated, the cause might be the flood of dying spirochetes themselves.

Excerpted from Cure Unknown: Inside the Lyme Epidemic, St. Martin's Press, 2008

Thank you for your book and your achievements in educating about the reality of Lyme disease. I'm a neuro Lyme sufferer, 12 years; despite fortunate access to care for much of that time, yet l am degenerating and trying to deal with the loss of career, relationships and mental function. This is a life and soul destroying disease.

I want to know this -- why is the suppression of truth about Lyme, and suppression of research into tests and cure, not called what it is -- a repetition of the Tuskegee experiment, in which syphilis sufferers were denied treatment in the name of "science."

L

It has taken 5 years of going from doctor to doctor and being labeled with numerous different diagnosis that emotionally have devastated our family...the latest being MSA even though I lacked many of the symptoms that should have been there for such a diagnosis!

We requested neuro after neuro to please test me for Lyme Disease; only to be told there was no need that I did not have it and did not live in an area where Lyme was an issue...this last month I received my testing through a LLMD and the results are Positive!

I am appalled at the politics involved in this and learning very fast how LLMD's have to be careful or they can come under the gun very fast! What kind of a world do we live in? Having read in your article about how folks diagnosis with ALS came back positive for Lyme!!...That in itself is a crime!!

What patients are having to endure to get a proper diagnosis is so wrong and needs to corrected. I feel so sad that this is the world we live in, that at this time and age something so obvious is being ignored.

How many more lives will be lost because of this "political" battle? How can so many be uneducated and/or ignorant or is it blind? This just does not make sense to me at all.

Thank you for all you are doing for all of us!

Finally a doc is treating me who is calling it what it is, "neuro Lyme"! I have had neuro Lyme for two years, and have known I had Lyme positive blot for the last year. Same story as all the rest. All in insurance network doctors refuse to acknowledge it as active, despite the symptoms.

Last week, spect scan says "oh yes I do", and the areas of functional deficit co-relate with the areas indicated on the scan. How scientific!

It is so helpful to review so much that has happened in the last year of my life with a new perspective, from losing my wonderful nursing job, and now my home, with the understanding that it's the Lyme. So grateful for articles that validate all that is at stake in coping with a deeply infected brain.

The odds are poor of prevailing to change such a system where many of the players have a major handicap as part of the contest, but surely there is a God who sees, and is fighting on the side of right.

Pearl