Could some cases of Progressing relapsing Multiple Sclerosis be in fact as a result of an unidentified spirochetal infection Borrelia or commonly referred to as Lyme Disease.
How often are patients with Neurological illness - Parkinson's, Multiople Sclerosis, ALS or Motor Neurons, properly assessed for a Borrelia infection?
How many are ever tested for Lyme Disease, just one Borrelia infection ?
Of those who test negative - how many realise that research shows that up to 50% of those tests can be false negative?
Even the makers of the test kits for the UK tests Trinity Biotech say 'that Negative results (either first or second-tier) should not be used to exclude Lyme disease.' link here
yet so many of our doctors and consultants are using these negative test results as proof that patients don't or can't have Lyme Disease.
Below is yet another fascinating lecture by Tom Grier and something anyone with Neurological Illness or their carers should read.
LYME ON THE BRAIN
by Tom Grier, 8.28.10
Also in modern Lyme disease mouse model; the infection appears to have disappeared, but ticks that feed on the mice can then infect other mice. We might be looking for spirals, but that doesn’t mean that’s what we will find in every case.
Spirochetes are masters at morphing and changing forms. It helps them survive or another way of putting it; it contributes to relapses occurring even after aggressive antibiotic therapy.
What these early MS researchers found was amazing.
First most isolated the bacteria from the human MS lesions, but just like Syphilis, they found it was only possible to keep them alive in animal models.
Culturing Borrelia in 1911 was just not yet possible.
Once the organism was introduced to various animal models, it was often and many times re-isolated from the brains of the animals and reintroduced to new uninfected animals with exactly the same results.
The bacteria found its way to the brain of the animals, and the brain tissue could cause infection in uninfected animals.
The research became so established that the researchers often communicated with each other and commonly referred to the organism as “The MS Spirochete” which was eventually named Myela phethora or “myelin loving” by Dr. Gabriel Steiner from Germany.
Dr. Steiner was the most fastidious and persistent of all the MS/spirochete researchers, and wrote several position papers on the position, that MS was caused by an unidentified species thought most likely to be in the Borrelia family of spirochetes.
Steiner transferred the MS agent to many animals including monkeys. He created a better silver-stain, which we still use, today and is called Steiner-Silver-Stain.
When things got dicey for Jewish scientists in Germany in the mid 1930s, Steiner fled Germany and resettled in Ann Arbor, Michigan.
Steiner did not publish again for over a decade, and was amazed that America had nearly no knowledge of the European spirochete model of MS, so he wrote an article in 1952 called: “The Pathogenic Role of Spirochetes in the Etiology of Acute Plaques in MS”.
What Steiner found in American MS patients was the same as other parts of the world. MS lesions sometimes contained spirochetes that could infect animal models.
Compare below the photo of a spirochete from the lesion of a German MS patient in 1922, compared to the spirochete isolated from an American MS patient in 1952 from Michigan.
His work was completely corroborated by an American scientist Dr. Rachael Ichelson, who worked in public health in Philadelphia for 40 years.
She was written up in a column by First Lady Eleanor Roosevelt as the pre-eminent female scientist of her decade, and this was ten years before she studied MS.
Her outstanding work on MS which she did on her own time and her own money was eventually noticed by TIME magazine which did and article on her in 1957.
But an unfortunate twist of fate occurred. In 1957, Rachael was written up in TIME magazine as having a possible cause and treatment for MS, but the latest rage in 1957 on the heals of Polio, was everything undiscovered was caused by a virus.
When TIME magazine went to get a quote from the newly established MS society of the time, they merely stated that MS was not an infection.
If it was an infection, then sisters would be infecting brothers, parents would infect their children, and wives would infect husbands.
It never occurred to them that this infection was not passed from person to person, but rather from tick to human! An incorrect and capricious assumption led to the discontinuation of work of immense importance.
During this time an ambitious scientist who said his viral theory was correct discredited Rachael Ichelson’s work.
He went on to say that spirochetes were not the answer because in his experience, only 5% of MS patients had evidence of spirochetes.
To date, no VIRAL theory of MS has panned out, while more evidence grows each year for a connection to spirochetes.
This story of a politically powerful scientist crushing a public health worker for his own glory is almost an exact plot-line from Ayn Rands “The Fountainhead”, it is an epic tale and a tragic one.
Rachael died of cancer just a few years later ruined not by science, but by politics.
In 1995, we conducted an antibiotic treatment study for MS patients from Lyme Endemic Areas of the Midwest.
Most of the patients were from St. Louis County, Pine County, and Beltrami County in Minnesota and a few patients were from Wisconsin and Minnesota.
It was a preliminary study just to get an idea if some local MS patients were actually Lyme patients, and if so, would they would respond to three months of antibiotics.
It was called the Lyme Endemic Area MS Study or LEAMSS.
In our study we pre-tested all MS patients for Lyme disease by Western Blot and ELISA; we only accepted seronegative patients that had been diagnosed with MS either by MRI or spinal fluid markers.
But our study was skewed in one aspect, we required all MS patients in our study to have at least three symptoms consistent with late stage Lyme and affect more than just the CNS.
[b]We only accepted seronegative MS patients because we wanted to establish that in this late stage of MS/Lyme, those Lyme patients were seronegative for antibodies.[/b]
More importantly, we felt it was only ethical that anyone who tested positive for Lyme disease had to get treated immediately, so seropositive patients were not accepted; they were treated.
Accepting them into our study would have made our final numbers look more favorable, but we stuck to our decision to exclude all Lyme seropositive patients from our data.
Out of 26 patients, only three seroconverted; all were positive by IgM Western Blot at 4-6 weeks. These patients responded to antibiotics but not dramatically.
Five more patients had favorable response to the three months of antibiotics, but again there were no dramatic cures or immediate responses.
What is most important in this study was the fact that we got 3 definite seroconversions after six weeks of antibiotics, and that a treatment failure patient named Judy from Bemidji, Minnesota, stayed on amoxicillin for 15 months after the study ended.
Judy had not responded in any favorable way to her three months of doxycycline. In the last week of the study she was switched to amoxicillin.
We followed our study protocol to the letter, but our length of treatment was grossly inadequate.
When we did the year follow-up, Judy had made a nearly complete recovery, and was back after years of being disabled to a full-time mail carrier in Northern Minnesota.
It then was obvious that we had not treated long enough to overcome years of brain damage cause by the bacteria, and that cell wall agents like amoxicillin might be a better choice for treating neurological Lyme disease than a bacteristatic drug like doxycycline which can diminish metabolic function of spirochetes and perhaps make them even more dormant.
Doxycycline acts on the 30s ribosome in the bacteria, and diminishes metabolic activity without killing the bacteria. The body’s immune system then has a chance to finish the job. We call this a BACTERISTATIC antibiotic.
The cyclines class of antibiotics or macrolides, inhibit high metabolic activities like bacterial division.
Penicillin class antibiotics work on the 50s ribosome and block cell wall synthesis of dividing bacteria. This usually leads to bacterial death by structural failure.
However if the bacteria don’t divide or are slow dividers or are intracellular, the antibiotics often fail.
Macrolide antibiotics like clarithromycin can get in the brain and inside cells but does it kill the bacteria?
Cephalosporin’s can get in the brain but not inside human cells, so does it kill intracellularly and what about the dormant bacteria that these drugs cannot in anyway affect or kill?
This is not an infection we want to linger in our body and find hiding spots.
At the conclusion of our MS antibiotic treatment study, we brought our results to the state health department and to local MS experts.
We were amazed at the total lack of interest and hostility that we were met with. We were passed to the lowest possible echelon of beaurocrates who had little or no understanding of our work, and no one took even ten minutes to understand the history of spirochetes and MS.
They had made up their minds already, and we were not to be taken seriously.
The health department seemed irritated with us and had no time or interest to discuss it.
Our only request of them was to make MS in Minnesota a reportable disorder for five years so we could look for incidence and patterns of infection, and to inform doctors that current Lyme tests could not detect the infection in MS patients.
Their response was that MS is not an infectious disease so therefore was not reportable.
To me this seemed like a total lack of scientific curiosity; frankly a belligerent attitude from people who are paid with public monies and whose job it was to keep Minnesotans well.
When the state’s foremost expert on MS was given the data, he merely dismissed us with a short factoid
“Dr. Patricia Coyle tested 20 MS patients for Lyme disease and not one had Lyme! MS is NOT LYME!”
Now there’s an all or nothing black and white determination based on one poorly designed study.
What he never saw from Dr. Patricia Coyle was just one year after our study, Dr. Coyle, MD, PhD presented at the San Francisco International Lyme conference a 47 patient MS study where 15 patients did in fact turn out to have Lyme, and responded favorably to treatment.
A nearly identical finding to what our study showed one year earlier.
What she did different from her first study or our study was that she did not use blood serologies, but used tests that could detect bacterial proteins in CSF and urine. A test not available to doctors or patients outside of an advanced research project.
So today in Minnesota, we do not have five years of useful MS reporting data, nor are patients informed that they may have as much as a one in three chance of responding to long term antibiotics.
MS patients are in fact often told by National Organizations to not pursue Lyme disease as a cause as it was a waste of time and money.
If you had a 1 in 20 chance of being cured of MS by taking less than $1000 worth of amoxicillin, would you do it? MS patients are not being given that chance or choice.
What I consider a waste of time and money is, the MS medications that have been tried for the past twenty years. We have not seen in my opinion any substantial lasting improvement.
They cost as much as $100,000/year, are painful, and seem to lose their usefulness after a few months.
What I would advocate for MS patients who also have symptoms consistent with Lyme disease is exactly what I did for myself:
I sought out antibiotic treatment because the option of doing nothing was leaving me no other choice other than unbearable pain, suffering, and ending my life in an assisted living home.
In 1991, when I collapsed and was brought to the hospital, my diagnosis had been and still was Progressive-Relapsing MS.
My doctor was on vacation and the [u]neurologist who saw me at 6 AM on a Monday morning had been only a few hours earlier attending an International Symposium on Lyme disease.
She looked at my chart for five minutes and said she couldn’t believe I had not been tested for Lyme disease.[/u]
My doctor treated me with 20 days of IV Rocephin; I was hallucinating, breaking into tremors and sweats, and the pressure inside my head was unbearable.
She said if I didn’t respond to treatment she had already placed my name on a waiting list for a bed in a nursing home.
Needless to say, when after 20 days I was worse than ever, she wanted to stop antibiotics completely bamboozled by my lack of a 100% recovery, I chose to self medicate on antibiotics rather than go to the Nursing Home.
So a doctor made the right diagnosis eventually but she had absolutely no experience with treatment or what to expect from a patient as sick as I was.
I had difficulty driving any distance for years, and reading was absolute agony.
The deficits Lyme left me with were great, but at least the agony of muscle pain, joint pain, fevers, atrial fibrillation, and the unrelenting pressure in my head were under control and manageable.
People ask me how long I treated myself.
It took an entire year of antibiotics just to rid myself of the pressure in my head, and another two years to be able to read without seizures, and to drive without risking lives.
No antibiotic seemed to help my neurologic symptoms especially pressure in my head, until I took roxrithromycin 300 mg twice a day with Bactrim DS for two months, followed by Biaxin 500 mg twice a day with Flagyl 500 mgs twice a day for six months.
After that amoxicillin seemed to work the best for peripheral symptoms.
It is always amazing to me how quickly we forget how things were and how much things can change, but in 1991; it was not as easy as it is now to get medications from Mexico especially unapproved medications.
We owe a great deal of thanks to a politically savvy group of people who helped facilitate the ability to get drugs for Americans when they are not available within our healthcare system.
I am talking about the People with AIDS national organization or PWAs.
When AIDS patients could not get medications that were not yet approved for AIDS, the PWA organizations got special laws passed, and they were able to import medications not approved in America and distribute them without prescriptions.
This eventually helped open up the Mexican border to allow people to have access to medications as long as they were not controlled-substances.
I was as current as any Lyme patient could be with research; I knew about medications available in other countries, and some that were still new to human testing.
I had read about an Argentina brain study where patients with brain tumors were give antibiotics before open brain surgery.
No antibiotic before or since entered the brain as well as roxrithromycin. It accumulated up to 50 xs more in the brain than its related cousin erythromycin.
I figured what was preventing my pressure in the head and visual problems from getting better were the lack of antibiotic getting to the brain.
But the only people who could get Rulid legally in 1991 were the PWA buying groups.
So I called one in Colorado Springs and spoke to Ken, a very intelligent and medically savvy AIDS patient. He told me all about Rulid and eventually sent me articles to research.
(The Internet was rudimentary at this time, so Xeroxed hard copies ruled the day!)
He said he could not legally help me because I was not an AIDS patient, but he wanted my address to send me the articles.
The next day I received by Federal Express 120 tablets of Mexican Rulid from Hoerchst-Russel manufacture. A $500 care-package sent on faith that I would pay.
Within days of treatment, I could feel gurgling inside my brain. I had experiences that to this day I cannot describe nor care to repeat.
I knew that I had been right. It wasn’t just the right drug that was needed; it was delivering the drug to the brain in high enough dose that was important.
To this day 18 years later, we do not have any better drugs or drug delivery systems to get antibiotics into the brain.
I am convinced that this alone would make a huge difference in Lyme disease treatments.
If we establish through research and brain biopsy that Lyme disease survives traditional antibiotic treatments, perhaps then pharmaceutical manufactures will see the need for this research, but it may take orphan drug status to make it worthwhile.
That can’t happen when our own CDC talks about Lyme disease as if it were a minor annoyance and still believes in Lyme testing.
A Lyme patient with MS-like lesions on MRI.
An MRI of an MS patient’s brain seen with white matter lesions that are similar to what is seen in Lyme patients diagnosed with MS.
The blood brain barrier that normally protects the brain from most pathogens, can become leaky in early Lyme disease, and even begin to leak before a tick is through feeding.
This can allow undetected organisms to enter the brain early and evade both the immune system and standard Lyme testing.
In microbiology to determine the cause of disease without question, we want to fulfill Koch’s Postulates.
Prior to 1942, every attempt that was possible within ethical guidelines, was made to complete Koch’s Postulates to show that the MS spirochete named Myela phethora was responsible for causing MS.
Here is what early MS researcher accomplished
1) The organism was isolated from human MS lesions during autopsy.
2) The spirochetes could only be kept alive in animal models.
3) Inoculations of brain lesions from MS patients into animal peripheral blood caused the animals to become sick.
4) The infected animals sometimes had spirochetes that could be re-isolated from the brain of the animal.
5) The isolates could then infect more uninfected animals.
6) The numbers of spirochetes found was extremely low, and sometimes they disappeared in animal models.
7) Lesions from MS patients without observable classical form spirochetes occasionally caused infections in inoculated animals.
Then spirochetes could be seen in those animal’s brain or tissues. Suggesting that spirochetes had a dimorphic life cycle meaning it could be a spirochete or something that was different from a spirochete.
Koch's postulates are
The microorganism must be found in abundance in all animals suffering from the disease, but should not be found in healthy animals.
The microorganism must be isolated from a diseased animal and grown in pure culture.
The cultured microorganism should cause disease when introduced into a healthy animal. The microorganism must be reisolated from the inoculated, diseased experimental host, and identified as being identical to the original specific causative agent.
End of Part 3-B Lyme on the Brain
By Tom Grier
August 26, 2010
Next: Lyme on the Brain Part 4
Dr. Jill Livengoode and Robert Gilmore use a confocal laser microscope to look inside human brain cells infected with Borrelia burgdorferi
Dr. Judith Miklossey finds spirochetes in the brains of dementia patients and creates a mouse model of Alzheimer’s using Borrelia isolates from dead patients.
Local Autopsies of Lyme patients
The above is posted by kind permission of Tom Grier the author.
Tom requested that I make available the supporting references, these total over 100 pages.
I can't seem to add links to this post but should anyone wish these references I will e mail them with attachments so contact me, my e mail can be found in my profile in the right hand column of this blog.
Thanks to Madison Area Lyme Support Group for posting here
From Tom :-
Thanks to BettyG, Iowa Lyme Activist and group leader of www.mdjunction.com
Lyme board, for all her hours of work breaking up my work making it user-friendly for severely neuro lyme patients to be able to read and comprehend, proof reading it, and for its finished appearance.
Found on mdjunction here
I have long been interested in the work of Judith Miklossy a link into her website can be found in the right hand column of my blog or by clicking here
I had the privaledge to meet Judith Miklossy last year at the Lyme Disease Action conference in the UK and listen to a fascinating presentation by her on her work.
Anyone with a family member with Alzheimer's would do well to read Judith Miklossy' website. The science is still evolving and much more attention and research needs to be done in this field.