TREATMENT TO REVERSE MOTOR NEURON DISEASE.

'Any therapy which is capable of reversing the untreated

natural history of Motor Neuron Disease is Press-worthy.'

inmacdonald

Posts: 548

Joined: Fri 13 Jan 2012 22:32

by inmacdonald » Fri 23 Nov 2012 17:22

ALS-like Lyme and ALS not related to Lyme Neuroborreliosis:

Let us reduce the discussion to progressive incapacitating Motor Neuron Disease.
Dr William Harvey ,now deceased from a Heart Attack in year 2012 an buried with honor at the Cemetery of the US Air force Academy, developed Motor Neuron disease,progressive type.
He diagnosed himself ..He started a course of Long term antiborrelia antiBabesial antimicrobialtherapy.
Dr. William Harvey experienced a reversal of his motor neuron disease after long term antibiotic therapy.

Dr David Martz developed progressive motor neuron disease. He was diagnosed by several consultant neurologists as "most consistent with Amotropic Lateral Sclerosis. His children searched the Internet
and found the newspaper reports of Dr William Harvey's results with the success of long term antibiotic
and antibabesia therapy in motor neuron disease. Dr David Martz became a patient of Dr Bill Harvey.
Long term Therapy with antiborrelia/antibabesial medications produced a reversal of his disease. but from time to time, Dr David Martz must restart the Dr Harvey Protocol to maintain his recovery.

Dr. David Martz and I had a conversation on Nov 3, 2012 in Boston. We discussed our "MarkTwain" moments. Dr.Martz has since his recovery, treated multiple patients with Antibiotics/antibabesial medications and has noted reversal of motor neuron disease in his patients. He is drafting a manuscript
to report these patients. It is likely that the completed manuscript will be published in a Scandinavian Neurology Journal, just as his case report was published. It is noteworthy that previous to the acceptance of
the Harvey Martz manuscript in a Scandinavian Journal, it was reviewed and rejected by multiple journals based in the USA and in the United Kingdom.

Any therapy which is capable of reversing the untreated natural history of Motor Neuron Disease is Press-worthy. The untreated natural history of Motor Neuron Disease is a short pathway to death by suffocation.
Above all , do no harm.
Best, 
Alan B> MacDonald MD

Motor neuron disease recovery associated with IV 
ceftriaxone and anti-Babesia therapy

Conclusion

We have documented the full neurological recovery in a patient 
with an unrecoverable MND. Thesuccessful clinical outcome was 
associated with antibiotic therapy in response to evidence of two 
concurrent infections. 

We suggest that MND may be associated with an infectious trigger
in certain cases. The use of antibiotic therapy in MND merits further evaluation.

The above comments by Dr MacDonald was posted on 
Lymenet Forum here  in response to my comments about 
an ALS/MND forum post.

Earlier posts about Dr Martz and his research can be found here  

SYPHILIS LESSONS FOR LYME DISEASE

For the past 30 years Dr. Alan MacDonald has worked to revive the Model of Syphilis and draw attention to clinical and laboratory parallels between 

Treponema pallidum infection and Lyme Borreliosis. 

Dr. MacDonald hypothesized that Alzheimer's disease might be the late neural borreliosis equivalent of General paresis of the insane. 

He further hypothesized that syphilitic Tabes Dorsalis might have a "spinal cord only" neurodegenerative equivalent In borreliosis, namely Amyotrophic Lateral Sclerosis (Lou Gehrig's Disease). 

He hypothesized that syphilitic Temporal arteritis might have a Borrelia equivalent in Temporal arteritis of unknown cause.

 In addition to the ongoing Alzheimer's studies, which would occupy the remainder of his research career, Alan made basic new observations in pathobiology. He was the first to publish evidence for a cystic form of Bb, granular forms of Bb, and cell wall deficient forms. 

Although officially retired now, Dr. MacDonald has started a research collaboration with Dr. Eva Sapi of University of New Haven.

Dr MacDonald and many other distinguished researchers and doctors will be presenting at this years ILADS Conference in Boston details here  

Dr MacDonald's hypothesis are slowly becoming acknowledged and researched elsewhere we have a lot to thank him for.

Judith Miklossy has also found Borrelia in the brains of patients with Alzheimer's here

Dr Martz found patients with ALS linked to Borrelia and with appropriate antibiotics some recovered and some stabalised  here 

Three cases of neuroborreliosis misdiagnosed as giant cell arteritis.  here 

Link to Dr MacDonald's website here

link to Borreliosis Spirochetes imaged from Human Blood -- Case studies  here  

SUCCESSFUL TREATMENT OF MOTOR NEURONES DISEASE, ALS, LOU GEHRIG'S

Dr. David Martz -- unedited footage from Bev Feldman on Vimeo.

Dr Martz was diagnosed with Motor Neurones Disease ( Amyotrophic Lateral Sclerosis, ALS, Lou Gehrig's Disease) in 2003.

Above he talks about his journey in being tested for Lyme Disease but repeated negative serology until eventually a positive DNA test in Urine.

He was treated with aggressive IV antibiotics, he says the change was dramatic.

'Within 1 month the body pain that had required oxycodone had disappeared, the arthritis that had required Intramuscular Methatroxate had totally disappeared.

Within 1 month my energy went from half an hour to with 4 to 5 hours stamina.

By 2 months I was able to cross my legs without using my arms to assist them.

By 3 months I could get up out of a chair myself without anyone having to pull me up.

By 6 months my Neurological findings had disappeared.

I did not return to absolute complete normality but did return to about 70% of my base line self and was subsequently able to open a new practice to see if my response to antibiotics might be shared by others stricken down with the usually fatal diagnosis of ALS ( MND). 

Rocky Mountain Chronic Disease Specialists was opened in 2005 and we saw approximately 900 patients over the next 2 1/2 years.

 About 100 of them had ALS ( MND) we did identify that some patients did respond to antibiotic therapy regardless of the positivity or negativity of their Lyme Disease testing by any laboratories.

We found about 15% of people clearly got functionally better and probably 20- 30% had their disease stabilized, without progressing further.

This is unheard of and we are in the process of preparing this information for publication.'

________________________________

An earlier post on Dr Martz here

ONE CAUSE OF ALZHEIMER'S DISEASE AND OTHER NEUROLOGICAL DISEASES - ALS, MOTOR NEURONE, MULTIPLE SCLEROSIS, PARKINSON'S

Dr Alan MacDonald has been posting some excellent and informative posts on Lymenet Europe of late


Many patients with Chronic lyme Disease will remember Dr MacDonald from scenes in Under our skin As you can see in the above video Borrelia has not just been found in patients with Alzheimer's but also patients with other Neurological Diseases - ALS, Motor Neurone, Multiple Sclerosis and Parkinson's.


According to Under Our Skin news clip Dr MacDonald became ill with an Alzheimer's like illness and had to retire. He says on the Lymenet forum that he is doing well providing he is on medication, clearly reading his posts there is not a lot wrong with his cognitive abilities and I was delighted to read the following.


'My research was interrupted by several years when I was ill. I have now returned to limited Alzheimer's disease Research as an Affiliated Researcher at the Harvard University McLean Brain Bank.'


Taken from the comment below:-


I am glad that you asked:
Dr Judith Miklossy has always worked independently commencing her studies on Neuroborreliosis and Alzheimer's Disease in 1993 with her initial publication in Neuroreport.
She is presentlythe President of a Foundation which is devoted to Alzheimer's research and connections
to neuroborreliosis. She operates her own website, which contains her credentials and her biblography.


I have always worrked independently commencing my Studies of Alzheimer's disease and connections
between Neuroborreliosis and Alzheimer's disease in 1986 with my publication in the Journal of the American Medical Association "Borrelia inthe Brains of patiens dying with Dementia", followed by the 1987
article "Concurrent Neocortical Borreliosis and Alzheimer's Disease" published in Human Pathology,
and then"Concurrent Neocortical borreliosis and Alzheimer's Disease - Description of a spirochetal cyst form", in 1988 in the Annalsof the New York Academy of Sciences.


Although Dr Miklossy and I have a close friendship, we beleive that maintaining independent
research Laboratories ( In New York and in Switzerland) is the ideal pathway to establish 
a bibliographic base of independently produced papers to support th concept of an infectious
pathway to future development of some ( but not all) cases of Alzheimer's Disease.


I have never been a reviewer nor referee for the peer review of any of Judith's papers.
Judith has never been a reviewer or referee for the peer review of any of my papers.


My Last published works were reviewed and accepted for presentation at the Alzheimer's Disease
and Related Disorders International conference in 2006 Madrid Spain. My research was interrupted by
several years when I was ill. I have now returned to limited Alzheimer's disease Research as an Affiliated
Researcher at the Harvard University McLean Brain Bank.


What commonalities have been gleaned by two independent investigators working on the Chronic
Neuroborreliosis /Alzheimer's disease connection:
1. Identification of Borrelia burgdorferi spirochetes in Autopsy Alzheimer's brain tissue by
Silver staining ( Miklossy+ MacDonald+)
2. Culture of Autopsy Alzheimer's Brain tissue to yield growth of Borrelia burgdorferi spirochetes
(Miklossy + MacDonald +)
3. Idenification of argyrophilic plaques in Autopsy General Paresis brain tissue 
which are exactly the same size, density and distribution as argyrophilic plaques in
Alzheimer's disease autopsy tissue ( Miklossy + MacDonald +)
4. Identification of bacterial peptidoglycan staining in Alzheimer's plaques
(Miklossy + MacDonald -not studied)
5. Indentification of Intracellular borrelia burgdorferi spirochetes within diseases neurons
inautopsy Alzheimer's Brain tissue ( Miklosssy + macDonald+)
6. Identification of the role of the granular form of borrelia burgdorferi as a contributor to
the classical finding of "granuolo-vacuolar" degeneration of Neurons in Alzheimer's disease
(Miklossy +( immunohistochemistry) MacDonald + (In Situ DNA hybridization))
7. The use of highly specific molecular beacons to pick up evidence of Borrelia burgdorferi DNA
sequences in Alzheimer's disease Plaques ( MacDoanld +)
8. The use of PCR performed on total Alzheimer's frozen brain tissue from the Harvard Brain Bank
to amplify borrelia specific DNA sequences from Orf BB0147 and to confirm the DNA structure
by DNA sequence analysis of PCR amplified products. (MacDonald +)


We seek to analyze Cerebrospinal fluid from Alzheimer's Disease patients for the following:
a. Borrelia burgdorferi Specific DNA
b. Whole proteome analysis using Dr Steven Schutzer's MASS spectroscopy analysis
protocol which was published in PlosONE. Dr Schutzer's program is able to
reliably distinguish CSF specimens from Chronic Lyme Disease patients
and to separate such patients from those with Chronic Fatique (notlyme),
Based on State of the art Proteome analysis via Mass Spectrographic Analysis.
Respectfully,
Alan B.MacDonald MD
PS: Ifyou have a moment,please read Dr Hideyo Noguchi and J E.Moore's paper in the Journal of Experimental Medicine from their lab at the Rockefeller Research Institute in New York City
(Link: http://jem.rupress.org/content/17/2/232.full.pdf+html ) and you will read about the "politics of Paresis" which prompted heated debates between Noguchi and Professor Max Nonne.


Lymenet Europe forum here


Dr Alan Macdonald was the first person to find Borrelia spirochetes in the brains of patients who had diesd from Alzheimer's I have posted before about him and his work here 





Dr MacDonald is the first person I have heard of diagnosed with an Alzheimer's type illness retired from work who has sufficiently recovered to return to work, albeit limited and for that work - to be research into Alzheimer's Disease this most important research area.

RECOVERY FROM ALS, MOTOR NEURONE, LOU GEHRIG, MULTIPLE SCLEROSIS, PARKINSON'S

Congratulations to David Martz, MD the 2011 recipient of the Invisible Disabilities Association Research Honors Award.

In this video Dr Martz touches on his personal story of being diagnosed with ALS (Amyotrophic lateral sclerosis) known in the UK as Motor Neurone Disease or Lou Gehrig's Disease in 2003.

In time he realised that some of his arthritis symptoms could indicate an underlying condition of Lyme Disease although initial testing came back negative. However one test eventually came back DNA positive for Lyme Disease and he was treated aggressively on long term antibiotics making an amazing recovery.

I had the privileged of meeting Dr Martz at the London ILADS conference in 2010 and listening to his personal story - as he described many symptoms I had also experienced I found my self nodding in agreement. My diagnosis was not the same but I was surprised how many of my symptoms were as he described. Arthritis and muscle weakness, difficulties climbing stairs, difficulties lifting even small items, difficulties raising from a chair/bed, difficulties rolling over in bed or walking across a room, swallowing problems of course that just didn't describe that constant unremitting pain.

Dr Martz recovered and opened a clinic in Colorado where with a group of doctors they treated 850 patients with possible Chronic Lyme Disease many of them with a diagnosis of MS (Multiple Sclerosis) Parkinson's and ALS or Motor Neurone Disease.

At the London ILADS conference he discussed his research findings which he is hoping to publish shortly.

From the Invisible Disabilities Association here this is a list of what he is hoping to publish, they need to be disseminated far and wide among patients and doctors dealing with these Neurological diseases :-

8-year follow-up case report of antibiotic-responsive ALS-like illness; 

Objective functional improvement in 15 patients with ALS-like disease; 

Antibiotic-responsive Lyme-like illness in 40 rural Coloradoans; 

Outcomes of 90 ALS patients treated with extended antibiotic therapy; 

Case report of antibiotic response of biopsy-proven pulmonary sarcoidosis; 

Minimal complications of extended antibiotic therapy in 330 patients; and, 

A clinical study of 850 patients treated with extended antibiotic therapy for “Chronic Lyme Disease”. 

Thank you Dr Martz for your work in helping others at a time in life when most of us would sit back and enjoy some peace and relaxation and thank you to your lovely wife for her patience and support in helping you in your efforts.

ACTION FOR LYME DISEASE

We need ACTION FOR LYME DISEASE and this is one way we can help raise awareness by following Dr Mualla's example.

Thank you Dr Mualla Mcmanus.

Dear Lyme crusaders,

I am from Australia. My husband died from Lyme disease complications because the Aust government denies the existence of Lyme disease in Australia. I founded the Karl Mcmanus Foundation for Lyme Disease research and awareness ( www.karlmcmanusfoundation.org.au).

I have contacted the Norwegian, Danish, German Lyme disease associations and we are proposing to contact Sir Bob Geldof to recruit musicians to have a Lyme Aid concert globally.

I was wondering if you could also lobby Bob Geldof to to organise a Lyme Aid concert. We can have a huge global event so that governments take notice of Lyme disease worldwide.

This applies to Africa where the symptoms of Lyme disease is confused with malaria and the medical system don't know anything about Lyme yet

Africa has one of the most lethal strains of Lyme- B. crocidurae. Ticks occur in every continent in the world even in Antarctica. Hence Lyme Borreliosis is a global problem.

Let us all work together as one BODY so we can have the maximum persuasive power in the global sense.

Have Lyme disease legitimised so sufferers can be diagnosed and treated before it becomes chronic.

I am attaching a letter I have written representing Australia.

If you write one representing your State and send it to the email address on the letter for Bob Geldof's agent we can persuade him about the seriousness of Lyme neuroborreliosis.

Please help to spread this message to other associations and then if you have contacts you can recruit rock bands , rock stars to play for this very worthwhile cause, Lyme Borreliosis.

Best regards Dr Mualla McManus
p/s sorry if you get this email twice as I was trying to ensure everyone received it.

9 Jan 2011

Sir Bob Geldof,
tina@bobgeldof.info

Dear Sir Bob:
Re: Lyme disease - the 'leprosy of the 21stcentury'

You have the foresight, the passion and an amazing ability to unite so many musicians and help many urgent and important causes around the world.

I am writing to ask for your help to raise awareness of Lyme disease (borreliosis), one the fastest growing infectious diseases in the world - faster than AIDS in some countries.

Lyme disease can affect any age group - children, adults, the elderly, male or female. It is transmitted by a tick bite and the Lyme disease bacteria (borrelia) are present in every country where there are ticks.

However, many governments ignore/deny this disease, which means sufferers are often unable to access appropriate treatment.

Worse than that, awareness of ticks and this disease is underplayed resulting in unnecessary significant spread .

Even if bitten, an immediate inexpensive short course of antibiotics has shown to be effective in halting the development of this devastating chronic disease, yet ignorance denies this strategy.

Unlike AIDS the onset of symptoms are subtle and overwhelm the patient slowly, so many patients are considered mentally unstable when they try to explain their symptoms., which range from muscle twitches, skin conditions, arthritis, memory loss, depression, paralysis, Parkinson's-like symptoms and other neurological symptoms.

Thus their infection is ignored and further spread unchecked (it is sexually transmitted).

The problem is that each person with Lyme disease can have different set of symptoms, so diagnosis is difficult. Sufferers are often misdiagnosed as having neurodegenerative diseases, such as MS, motor neuron disease, Parkinson's, Alzheimer's and fibromyalgia.

Also, testing is often inadequate in many countries hence confirmation of Lyme is not possible.

Sufferers often have to pay for private testing at overseas labs in order to get a correct serum result and diagnosis.

Global manifestations
Statistics on the incidence of Lyme disease are quite poor in most countries, both developed and underdeveloped, including the USA, UK, EU, countries in Asia and Africa.

This is because of difficulties in establishing a correct diagnosis (vague, varied symptoms & inadequate testing) and the denial of Lyme disease existence.

The Centres for Disease Control and Prevention (CDC) in Atlanta USA, consider Lyme disease, the fastest growing vector-borne disease in the USA.

By conservative estimate, the number of new Lyme disease infections per year may be ten times higher than the 45,000 cases reported to the CDC during 2009
(http://www.cdc.gov/ncidod/dvbid/lyme/ld_UpClimbLymeDis.html)

In regards to chronicling Lyme disease in Africa, more than 40 published studies have been released.

A 14-year study in the Senegalese village of Dielmo found an average of 11 per cent of the villagers presented with the infection each year.

Also, the researchers from the Institut du Recherche pour le Développement (IRD), who carried out the study are quoted in Afriqu' Echos magazine as saying: “Lyme disease is the most frequent bacterial disease in Africa, but it is also an affliction that is completely unknown to health professionals.” The IRD evaluated a rural African area of Dakar and found that “Lyme borreliosis was the most frequent reason for dispensary consultations after malaria.”

Imagine the complexity now in Africa of untangling the diagnosis and treatment of two diseases Lyme and malaria, both of which have similar symptoms and both presently ravaging in Africa. Healthcare practitioners are not trained to differentiate.

A public health issue Like AIDS, the infected individual can transmit the disease sexually, in utero and via blood transfusion; hence it is a public health issue.

It has the potential to grow exponentially and reach the proportions of an epidemic.

Lyme disease can be a treated successfully when and if it is diagnosed early.

If it is unnoticed and becomes a chronic disease that not only becomes debilitating and sometimes fatal, but costs millions of dollars in health costs to the community.

My personal InvolvementI have become a campaigner for this cause because my husband, Karl, had Lyme disease. He died from the ignorance and neglect by the medical system in July 2010.

It was bad enough being seriously ill, but without help and support from the medical system in Australia, it was the worst hell you could imagine.

Despite my academic background in neuro-pharmacology, immunology and haematology, and my associations with credible institutions (The University of Sydney and Garvan Institute), the supportive scientific international papers for Lyme diagnosis and the positive test results with the international lab Igenex, my husband and I were still ignored.

I have set up the Karl McManus Foundation for Lyme Disease Research & Awareness to www.karlmcmanusfoundation.org.au raise money for research of Lyme in Australia, training of Australian doctors in how to treat Lyme, as well as raising Australian public awareness.

With the guidance of the foundation's directors (professors from relevant fields) I hope to address Lyme disease needs in Australia, but I am acutely aware that Australia is just one of the many countries affected.

This is a worldwide problem.

Urgent help needed

Please help the global community of Lyme disease sufferers bring this awful disease into the spotlight so that its spread is stopped and sufferers can get care and treatment.

There are many Lyme disease organisations in the world that can work together with to raise awareness for this disease.

These include:
International Lyme & Associated Diseases Society ( www.ilads.org ),
the UK's Lyme Disease Action ( www.lymediseaseaction.org.uk ),
California Lyme Disease Association ( www.lymedisease.org ),
Canadian Lyme Disease Foundation ( www.canlyme.org ) ,
Norwegian Lyme disease association ( www.lyme.no )
and many more.

The poorer countries of the world don't have any associations to lobby their governments. Most people in poor countries don't even know they have Lyme disease.

We are in the 21stcentury but Lyme disease is considered as an 'untouchable disease'.

It is the leprosy of this century.

If you could please help us to organise a worldwide concert to raise funds for the diagnosis, treatment of Lyme disease (borreliosis), it would save lives and protect our future generations.

It would also get the attention of governments to actually recognise this disease as a serious infection.

Yours truly
Dr Mualla Akinci McManus
Director, Karl McManus Foundation for Lyme Disease Research & Awareness
www.karlmcmanusfoundation.org.au

BRAIN LESIONS, WHITE MATTER

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.

Part 3-B
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.

TICKBITE-LYME DISEASE-MOTOR NEURONS, PARKINSON'S, MULTIPLE SCLEROSIS

a2zmedia 23 August 2009
This video clip was put together to demonstrate to Norwegian broadcasters what problem Lyme Disease is and how it can affect your life if not treated. For more information about our project, please go to http://www.lymefilm.com/


Below is a translation from a newspaper article on Eivind's struggles not just with Borreliosis but with his medical Authorities.

The original article and further video can be seen here

Lived at ten years of death sentence after the tick bite
The state says Eivind Markhus (45) has the deadly disease ALS. Although he is convinced that a tick bite have linked him to the wheelchair.
ASLE HANSEN -->

Living in a wheelchair: Eivind Markhus (45) was formerly an active player on Strømsgodset A-team. This video reportage made a few weeks before the trial in summer 2007. Video: Anja Nygren Lohne
Borreliosis Lyme
The most common tick-borne disease is Lyme borreliosis. It is caused by a bacterium. The disease should be treated with antibiotics. There is no vaccine against borreliosis. • So far this year is 59 Norwegians diagnosed with severe Lyme borreliosis. • In 2007, 328 people registered with complicated borelliasykdom, in 2008 346 persons and 273 persons in 2009. • Most cases of this tick disease occurs in coastal areas on both sides of the outer Oslofjord, Telemark and Agder counties. Kilde: MSIS og Folkehelseinstituttet Source: MSIS and Public Health
annonse


Communicate via PC: The disease has weakened speech and Eivind Markhus communicate better through e-mail.



In the summer of 2007 lost Eivind Markhus compensation case he had filed against the state by Pasientskade Committee in Oslo District Court. The court did not agree that a failure treated neuro-borreliosis after tick bites have linked him to the wheelchair. Now the 45-year-old ready for the rematch in the Borgarting Court of Appeal, the appeal is scheduled in late June 2011. - Now, health-Norway to accept that I have Borrelia and ALS, "says Markhus the way he does best, via e-mail.


Former football player Within a few years the 45-year-old from a well-trained athlete, who played 13 First Division appearances for Strømsgodset in 1987, to be completely paralyzed and completely dependent on the wheelchair. Norwegian doctors have given him a diagnosis of ALS (amyotrophic lateral sclerosis), a nerve disease with fatal outcome. Foreign experts believe he has an active Borrelia infection in the body that mimic ALS. Eivind Markhus think he would have had a different health situation today if the Norwegian doctors earlier had put him on høydosebehandling with antibiotics for a long time.
Denied compensation Director Rose-Marie Christiansen in Pasientskade Committee say they maintain their argument from the court process where the board argued that it is "unlikely that the patient's disease, ALS is caused by borreliosis. If the disease still be triggered by tick bacterium, said Pasientskade Committee that the hospital acted properly regardless of the basis of available knowledge at that time. Eivind Markhus was given three, four years left to live in 2001, but has made the death sentence to shame. He lives now in the tenth year of his ALS diagnosis, without the need for breathing assistance, which is very unusual. Markhus am sure that antibiotic treatment he got against neuro borreliosis in the USA in 2003 slowed the disease and saved his life. He is optimistic ahead of the appeal, referring to an article in the Journal of the Norwegian Medical Association in May 2008 where it is established that Borrelia in rare cases can cause an "illness resembling amyotrophic lateral sclerosis. - When the experts of the Respondent now admits that Borrelia can mimic ALS, and even wrote a fagartikkel about it, I stated. This did not believe these experts last time when I said this, " From 2000 until today, the Norwegian Patients (NPE) received 28 cases concerning delayed or incorrect treatment of Borrelia / borreliosis. . It is only given under the two cases, while 26 cases are rejected.

ALS is referred to as Motor Neurons in the UK.

I have posted before about Dr Martz incredible story recovering from ALS or Motor Neurons diagnosed by John Hopkins Neurologist but found to be caused by Borrelia, Lyme disease. His presentations at the 2010 London ILADS conference were amazing as were his findings from the clinic he opened where he treated patients with Multiple Sclerosis, ALS/Motor Neurons and Parkinson's. Soon to be available on DVD. For earlier posts on Dr Martz put Dr Martz into the search box in the right hand column or click here

With my experience and knowing about Dr Martz findings I was able to encourage a local man who had been diagnosed with Polymyalgia Rheumatica like myself and then later Parkinson's, to see a specialist in tick borne diseases. He has now been diagnosed with Lyme Disease -already he is responding well to antibiotics.