Almost all ALS patients are Lyme-positive

It's not just the Halperin study (quoted in my book downloadable for free on the left) that found nine out of ten ALS patients infected with Lyme.

Dr. Martin Atkinson-Barr, CPhys PhD studied at Cambridge and did microbiological experiments at Rhone-Poulenc. Dr. Atkinson-Barr asked thirty random people with ALS to get tested for Lyme disease. Every single one of those ALS patients tested Lyme positive.

We reproduce Dr. Atkinson-Barr's own postings on the USENET newsgroup sci.med.diseases.lyme (emphasis ours):

Posting #1 on sci.med.diseases.lyme:

 

 

From: Martin Atkinson-Barr (mcmab@peoplepc.com)

Subject: Successful treatment of late-stage ALS

I am pleased to announce the following:

Since April 1999, 150 ALS patients have been tested for Lyme disease with a panoply of tests - incl Western Blot, LUAT, PCR. Not one patient has been found to be negative across all tests. Many have been shown to be PCR positive.

The prognosis and disease development of these patients is entirely consistent with ALS.

Treatment with oral antibiotic therapy has shown mixed results. In particular the use of conventional antibiotics (esp. doxycycline) has been associated with deterioration of ALS patients. In one case the patient rapidly succumbed. In earlier stage ALS patients there is some evidence for improvement, with restoration of speech in two patients and some reported easier swallowing, when treated with oral metronidazole or tinidazole.

The reactivity of ALS patients to Lyme tests has been previously reported.

 

 

In the course of the past 9 weeks a patient (body weight 125lbs, 66 years of age) with advanced ALS symptoms has been treated aggressively with IV metronidazole + conventional antibiotics (Biaxin initially) at doses of 500mg tid metronidazole IV and 500mg Biaxin bid orally. The diagnosis of ALS was made at the Mayo clinic. The patient was admitted in respiratory failure with tongue fasciculations, weakness in the right arm. The immediate prognosis was poor and the attending physician expected the patient to expire within 24 hours. The patient was ventilated. In the course of 7 weeks of the above therapy the patient has improved and is now ambulatory and off of ventilation using only occasional nasal oxygen. On the IV therapy the tongue fasciculations disappeared.

After 7 weeks the patient was taken off of the IV meds and treated with only oral tetracycline (500mg qid). On this treatment the tongue fasciculations returned. The IV therapy was reinstated with IV Rocephin replacing the oral Biaxin and the tongue fasciculations ceased. The patient continues to improve on a daily basis.

Tentative conclusions:

The etiologic agent of ALS is Borrelia burgdorferi.

Effective treatment of late stage ALS is possible with aggressive antibiotic therapy that must include metronidazole.

Other researchers have recently reported success in treating early stage ALS with antibiotic therapy.

ALS patients should not be treated with simple "textbook" antibiotic therapy which does not include a nitroimidazole.

This therapy should be considered experimental at this stage.

Regards

 

Martin Atkinson-Barr, PhD

 

 

Posting #2 on sci.med.diseases.lyme (May 21, 2001):

 

 

Let us be clear how I come up with the figure of 150.

When I published my work on metronidazole in Lyme around 20 patients contacted me and said they had Lyme AND ALS.

Once I had decided there may be a connection between the diseases I encouraged every ALS patient I came across, and a few physicians to test for Lyme. All told that is about 30. This is the most important group for they were unselected. There were NO negatives in this group and for the most part they were either IgG or IgM Western Blot positive, mostly to CDC criteria (which is over strict and ignores the 39kDa line)

Dr Nick Harris has been sending on to me all of the ALS patients that have contacted him who were positive. These patients I questioned closely to determine if they had a clinical picture of ALS. All did. There have been around 20.

When my website was up (thanks to the ISP it was lost) around another 80 ALS patients contacted me with their results, all positive. No ALS patient has ever been in contact with me who is negative. There must be some.

If we were to take 150 Lyme patients we would be VERY surprised to have 150 positives, more like 100. However many of the above were pre-selected (why would you contact me if you were diagnosed ALS but Lyme negative, I would be snake oil.).

BUT, if the diseases were independent, we would expect a MAXIMUM of 100 cases in the whole of the US, so 150 becomes a significant number.

Now, those patients who were diagnosed ALS and tested Lyme positive carried on to develop the sequelae of ALS. Last Thursday we lost Dean Chioles, note that he was diagnosed with Lyme in 1998, before I published anything on Lyme.

We should also remember: Brian Pierson and Katherine Crowe who we also lost, both Lyme positive. Brian was 43 years old or so.

Now there have been 5 papers that describe clinically diagnosed ALS patients with Lyme reactive serologies (including the Halperin paper which finds a statistically significant number of Bb positive patients with ALS) and one letter by Mandell, Steere et. al. NEJM 1989;320:255-6 which found NO Bb antibodies in any ALS patients.

The responsibility is now with Mandell, Steere et. al. to come forward and explain how they can find NO Lyme positive ALS patients when I can find them so easily and even ALS patients themselves can see the connection.

How about it Dr Steere, this is an open venue? Perhaps one of the Yale workers will read this and we can enter into a debate that will explain why this connection has been stalled for 12 years.

With best regards to all.

 

Dr Martin Atkinson-Barr

 

 

If Dr. Martin Atkinson-Barr is telling the truth and if there have not been made major mistakes that led to the false-positive testing (for Lyme) of the majority of those 150 people with ALS, then there can be only one conclusion:

Lyme and ALS are causally related.

Are Lyme-infected ticks thousands of times more likely to bite people with ALS, or has neuroborreliosis a hand in ALS?

Of course Lyme bacteria would be the cause of ALS, instead of ALS the cause of getting infected with those bacteria.

The doctors that make a comfortable living being "ALS experts" claim that even when ALS sufferers have been infected with Lyme before they developed ALS, that this is by no means an indication that Lyme has anything to do with ALS.

"It could be just a coincidence", they say. When confronted with the infinitesimally small likelihood that such a high percentage of ALS patients would be Lyme positive, they'll dig in their heels and proclaim that there must be some "coincidental, inconsequential factor" at work, something that makes people infected with Borrelia bacteria more susceptible to ALS - but that "something" is not the actual bacteria eating away at people's central nervous system. Neither is it an inflammatory immune response to those same bacteria living in the CNS. Because they do not believe that. That would namely do away with their entire medical specialism in one fell swoop - they would have to get educated on real medical science instead of receiving yet another grant to spend a year or so, speculating on a genetic risk factor against some environmental toxin or other.

Instead, they say that instead of the Borrelia spirochetes causing ALS, it could perhaps be some mistake in the immune system, which for some reason decides to destroy the brain after a patient did got infected with Lyme disease bacteria. They say it's not Borrelia bacteria eating away at the neurons. It's not an inflammatory immune response to those bacteria. No, it is some elusive error in the genes of the person with ALS that wreaks all the havoc. In spite of all those positive Lyme tests. "Auto-immunity" of some sort. Perhaps. Say the "experts".

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1.  Robert Dean    Sunday, November 25, 2012

ALS is actually Bb eating away at the neurons. I´ve read that chronic Lyme disease can develop into an auto-immune disease. ALS is an auto-immune disease? If the Bb were destroyed by antibiotics, would the auto-immune disease come to rest or can it become independent of the original Lyme disease? What am I not understanding? Thank you!

Sincerely



2.  Sarah Vaughter    Sunday, November 25, 2012

The auto-immune theory of chronic, treatment-resistant Lyme is just an unsubstantiated theory and there is no reason to believe in it, because there is hard evidence that chronic Lyme is caused by the presence of living spirochetes.

Similarly, there is even less reason to believe in an auto-immune theory for ALS. There are people who claim that when pieces of damaged neurons enter other tissues (such as the blood), the immune system will detect them as unwanted and will make antibodies against those stray proteins. That is nonsense. The body has safeguards in place to prevent this, evolved perfectly, since immune systems exist. A much simpler explanation is the continued presence of pathogens.

The moral of the story: Don't believe everything you read - especially not when it makes very little sense.



3.  Robert Dean    Sunday, November 25, 2012

Very appreciated, thank you!



4.  Sharon Ward Taylor    Thursday, February 20, 2014

I was initially diagnosed with MS , 14 years ago. Last October 2013, I was diagnosed with chronic Lyme disease. This past January 2014, I was also diagnosed with active Lyme.........I am in Canada. Our testing for Lyme is inaccurate and inconclusive. If you show a positive (70% shows false negatives), the treatment protocol is ineffective, usually only 2 -4 weeks of antibiotics, if you get treatment at all. I had to send my blood samples to a lab in the states. I am also being treated in the states. Something must be done and done now. Lyme is a pandemic world wide. It is mis diagnosed and mis treated. A blood test must be the first test done to rule out Lyme when a person presents with various symptoms. It must become a standard test for everyone. Proper treatment must follow.



5.  Dee Bayro Canady    Thursday, February 20, 2014

So you were misdiagnosed with MS? or do you still have MS? Was your Lyme testing from Igenex?



6.  Sue McD    Tuesday, February 25, 2014

MS is the symptoms of Lyme



7.  Dee Bayro Canady    Friday, February 28, 2014

I understand that MS symptoms are similar to LYME. And that many people with LYME actually get mis-diagnosed with MS. The question I have is, people I know that think they have MS feel they do because it was confirmed by the actual lesions on MRIs. Do you have any info/ links/ advise to give these people who are not convinced to go have an Igenix test done.



8.  Sarah Vaughter    Friday, February 28, 2014

Lyme, MS and ALS all cause similar brain lesions so the first thing to be done when such lesions are found is to be absolutely certain that Lyme is excluded. Any doctor who tells you Lyme presents itself with "different lesions" suffers from confirmation bias.



9.  Sue McD    Saturday, March 1, 2014

There is no blood test to confirm MS.There is for Lyme. An MRI for a person with Ms, is quite often the interpretation of the Neurologist. And this is where the misdiagnosis happens. An MRI for MS is the same for someone with Lyme. AN MRI for a person with ALS is the same as Lyme. The spirochetes move and multiply anywhere in your body...including the brain. A blood test from IGeneX confirms Lyme pretty much every time...just as you read in the article by Sarah for those with ALS diagnosis. I have come across MS people who were diagnosed 20 and 30 years ago. Their condition was to the point of walkers and wheelchairs. Once their blood was sent to IGeneX and the results came back positive for Lyme, and they received treatment for Lyme, they are now walking. One is actually jogging. Some MS people like the attention and pampering and don't want to get better. Others believe the doctors who tell them they have MS and that Lyme does not exist. The IGeneX test proves otherwise. The Symptoms of MS are not "similar" to Lyme because it's not MS to begin with. While the Clinical Symptoms of Lyme are right in front of the doctor, they can't see this. They only know what is in the medical book. MS, ALS, Parkinsons,Lupus, Arthritis, Fibromyalgia and many other diseases. Check out lymedisease.org or canlyme.com. Lyme can be transmitted by an infected tick. Also in the blood supply and other sources. The migratory birds like the red breasted robin and many others bring the ticks to your backyard/frontyard. Just look for a moving freckle that might be skin colour. Most people tend to look for a much bigger bug. It's the one you can't see that is the problem.



10.  Sue McD    Saturday, March 1, 2014

so true.



11.  Carol Levy    Tuesday, March 18, 2014

150 patients is a very small sample. then you state if no major mistakes made, if not false positive. ALS is often hereditary in nature (my father and grandfather had it) This is irresponsible.



12.  Sarah Vaughter    Tuesday, March 18, 2014

You're wrong. When 100% of a 150-patient sample size tests positive for Lyme then this is statistically EXTREMELY significant. So significant that there can be only two explanations: (1) Dr. Atkinson-Barr lied. (2) ALS is a symptom of Lyme disease. There really are no other reasonable conclusions. I think it is _possible_ (but not too probable) that Atkinson-Barr lied, because AFAIK he did not publish supporting evidence for his claim. But that is the only other explanation I'm considering. Because I understand the statistics involved. There can be only one alternative explanation: Atkinson-Barr lied. And I would have accepted that as valid criticism. But the two points you made are wholly invalid.

Just to show how wrong you are, compare it with a "study" where we have 100,000 people who are dead, but their cause of death is a mystery. However, when we autopsy 150 random corpses, we find that every single one of them have a bullet hole in the back of the head. According to you, this absolutely does not mean anything. Sorry but you obviously understand nothing of statistics.

As to ALS "often" being hereditary ("familial" ALS vs. "sporadic"): Again you're wrong, because you're confusing absolute numbers with percentages. Percentages is what counts here. Familial ALS is 5 to 10% of cases. If it was the other way round, you'd have a strong point.



13.  Jeremy Wilson    Tuesday, June 17, 2014

Hi All, I'm in CA. My father was given DX of metal toxicity and Lyme disease (both confirmed through testing), then later given a Dx of late stage ALS. He's non ambulatory, ventilated, and has a gtube and resides in a long term sub acute facility in southern CA. The facility is treating the ALS, basically doing nothing but providing his basic needs, and I'm trying to get them to target the Lyme disease. I was intrigued by the above procedure and outcome and I was wondering if you have some tips for me to get this protocol in place for my father.
We recently had micronutrient testing done to identify nutrient deficiencies. He recently was treated for MRSA with IV vancomycin which caused to temporarily lose his hearing.
Are there any specific studies that I can present? Anyone that speak to the facility? Any support or suggestions are much appreciated. Thank you!!!



14.  Sarah Vaughter    Tuesday, June 17, 2014

Sorry to hear of the situation.

It is sad that there should be a requirement of additional material by the "sceptics" (deniers") in the medical community. I gathered most available data on this site and in my book. There is very little such material and it's mostly subtle, speculative, anecdotal or deductive reasoning. Except for the Halperin study detailed in my book, which is the smoking gun. Having said that, the mere fact of having been diagnosed with Lyme disease means, by mathematical near-certainty, that the ALS is a symptom of the Lyme, since "ALS" is very rare and Lyme is rare too, so statistically, there should only be a handful of people in the world with such a dual diagnosis.

However, since inexplicably (except when Lyme causes ALS!) many people have such a dual diagnosis, the ALS is a consequence of the Lyme and needs to be treated with antibiotics that pass the blood-brain barrier.

To anyone with a normal understanding of simple maths and aware of the incidency percentages of both, it should be very clear that a dual ALS-Lyme diagnosis means there is no "ALS" involved at all.

That means that there is an agenda at work when agressive treatment is not immediately initiated, and this also implies criminal negligence and liability when such treatment is not immediately provided. That's in theory of course. In practice, no court will listen to reason, facts, evidence and logic when it pertains medical issues where the opponent is the government or an insurance company. They defer to the "experts", the same ones that set the agenda that ALS is its own disease and that chronic Lyme disease does not exist.



15.  Lyme Stats    Thursday, May 28, 2015

Please sign and share: https://www.change.org/p/ba...



16.  Deborah Mast    Monday, August 10, 2015

Can you please tell me how I can get my husband tested for Lyme? He was diagnosed last month with ALS and I really want him tested for Lyme. We live in an area that has a lot of woods and animals close. The ALS clinic wont test him. Please. If you really believe this than you should prove it with further research.



17.  Sarah Vaughter    Monday, August 10, 2015

I did tell you where to get your husband tested for Lyme. I wrote this in my eBook as well as on this site. But I will tell you again: Igenex.

Of course no ALS clinic will test him. As I wrote, ALS clinics make their money by assuming ALS is a disease, not a symptom.

I am under no obligation to "prove it with further research". Unless you give me a few million dollars, a Ph.D. in medicine or microbiology, a research team, a hospital, a lab and a licence to experiment on people and with bacteria, there is little else I can do but provide a wealth of material on this site and in my large article on MS and Lyme on owndoc.com.

But ALS patients are occasionally proving that I'm correct, by writing in the comments on this site that they test positive for Lyme and are improving on antibiotics. Of course not many ALS patients test positive or improve with antibiotics, for reasons explained.



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