Item 1.) Possible connection between ALS and Lyme disease

Here’s some important information provided by or written by Martin Atkinson-Barr, PhD (in quotes):

“ILADS WELCOMES PHYSICIAN RECOVERING FROM ALS DOCTOR’S CASE SUPPORTS THEORY LYME DISEASE MAY BE THE CAUSE OF ALS
“Bethesda MD September 2, 2004 – The International Lyme and Associated Diseases Society (ILADS) strengthened its impressive membership today with the addition of Dr. Dave Martz of Colorado Springs, who joined ILADS 15 months after being diagnosed with Amyotrophic Lateral Sclerosis (ALS) also known as Lou Gehrig’s Disease. In April of 2003, Dr. Martz began suffering weakness and pain in his muscles. Dr. Martz soon lost much of his mobility. His condition worsened forcing him to retire from the medical practice he loves.
———————-link to www.shoptown.com] . Note that he was diagnosed with Lyme in 1998, before I published anything on Lyme.

“After six frustrating months with hope fading, Dr. Martz discovered the work of Dr. Gregory Bach of Colmar, Pennsylvania. Dr. Bach, who is a member of ILADS, suggested a link between ALS and Lyme disease. IGeneX Reference Laboratory of Palo Alto then confirmed Lyme bacteria in Dr. Martz. Dr. Martz then sought out a local ILADS physician who started Lyme disease treatment based on the recommendations of Dr. Bach. The results were dramatic.

“‘Before I found Lyme “literate” professionals, I could only function at a level of about 20 percent,’ says Dr. Martz. ‘But now that I’m in expert hands, I am up to 75 percent of full function and I hope to return to work soon as a physician, helping others with Chronic Lyme Disease.’ An internist, and Past President of the Colorado Medical Society, he is committed to giving others opportunities that have been given to him.

“The Centers for Disease Controls says that Lyme disease may be under-reported by as much as ten-fold. This means as many as a quarter of a million Americans may contract Lyme disease each year, yet most of them are unaware of it. ILADS will hold its annual meeting in October of this year in Rye, New York.

“ILADS president, Dr. Steven Phillips, says, ‘Dr. Martz is an example of the many physicians and medical experts we encourage to join ILADS so we can continue to raise awareness and make vital advances in the world-wide fight against Lyme disease.’

“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

“(physician e-mails only please, I cannot reply to every patient e-mail – it would be too many – but physicians who want to ask me detailed questions will be able to contact me and help multiple patients)

———————————————————-

“From: Martin Atkinson-Barr (mcmab@peoplepc.com)
“Subject: Re: Successful treatment of late-stage ALS
“Newsgroups: sci.med.diseases.lyme
“Date: 2001-05-21 21:16:29 PST

“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 who has a web page at [

“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”

(The preceding information came from the web page www.godlikeproductions.com/forum1/message467872/pg1. The web page discusses multiple topics, so ignore anything that is irrelevant and focus on that which is relevant and verifiable.)

Note that the above information does not prove that Borrelia burgdorferi, the spirochete that causes Lyme disease, causes ALS. It is possible for someone to have both ALS and Lyme disease, and if someone has slowly progressing ALS it is possible that safely treating their co-existing Lyme disease condition may improve their overall condition. It is also possible for someone to have only Lyme disease, and to have been misdiagnosed with ALS, and therefore treating their Lyme disease could cause them to improve. But, it is also possible that any chronic infection – whether it is from infected jawbone cavitations or from an infection in the bloodstream (or other body tissues) – could spread to specific parts of the body and trigger ALS in individuals who are susceptible due to environmental exposures or genetic differences or some other reason. Some clinicians have found Lyme disease in patients diagnosed with Multiple Sclerosis and Parkinson’s disease, and Lyme disease also has been found in patients formerly diagnosed with fibromyalgia and Chronic Fatigue Syndrome. All of those conditions share some symptoms and have some unique symptoms, yet when Lyme disease has been found and successfully treated, in many cases the patients have recovered normal levels of health. If Lyme disease is associated with these varied conditions, it’s also possible that the progression of symptoms is related to which parts of the body have been infected. Or, it could have something to do with which exact strain of Borrelia (or other pathogen) is present, or with which combination of pathogens is present in the body. There are endless possibilities. For example, Lyme spirochetes also have been found in the cerebral spinal fluid and brain tissue of people with Alzheimer’s disease. So, how do you explain why one person loses their mental capacity, but does not lose the ability to move their body (such as in some cases of Alzheimer’s disease), whereas another person maintains their mental capacity, but loses their muscular control (such as with ALS), and they both have Lyme spirochetes in their bodies? Scientists are still trying to answer this and a multitude of other questions, and once you start searching you can find volumes of scientific information on the Internet and within the scientific and medical literature about these topics.

Since chronic infections such as Lyme disease release toxins, including neurotoxins, into the body, and also deplete the body of nutrients, regardless of whether the infections are known to be the “cause” of the diagnosed condition or not, it makes sense to treat any identified infections in the safest effective way possible in order to relieve the body of that severe stress. However, in my opinion, antibiotic treatment is not the safest treatment available, especially not for people who are in fragile condition or who have pre-existing metabolism or detoxification defects. (See Wikipedia article called “Adverse drug reaction”: http://en.wikipedia.org/wiki/Adverse_drug_reaction.) And, after looking into the issue in-depth, I believe pharmaceutical antibiotics are not necessarily the most effective treatment for Lyme disease, either, and that there are other therapies that are safer, less toxic or non-toxic, and that are possibly more effective in the long run. But, since much of the detailed scientific information about these chronic infections is presented concurrently with information about antibiotic treatment, there is no way to learn as much as possible about these infections without also reading about the antibiotic treatments.

Note that “persistent or chronic” Lyme disease is “often referred to as neuroborreliosis.” The quoted phrases come from the following document from Jemsek Specialty Clinic, which mentions “neuroborreliosis,” “amyotrophic lateral sclerosis,” and “ALS” within the document:

www.jemsekspecialty.com/files/DetailedLymeOverview.pdf

See also the sidebar document, "Item 11," which is a list of definitions from Dorland’s Illustrated Medical Dictionary 30th Edition, beginning with the word “neuroborreliosis.”

Opinions – pro and con – about Dr. Gregory Bach, who was mentioned (above) in the ILADS press release provided by Martin Atkinson-Barr, can be found in a PDF document titled “Gregory Bach is offering false hope to ALS patients” at this link:

http://sci.tech-archive.net/pdf/Archive/sci.med.diseases.lyme/2007-01/msg00398.pdf

If you look at that document, be sure to read the whole thing if you can, since a wide variety of opinions are expressed, some useful information and links are included, and some mistakes are corrected in later posts in this chain of archived web posts. The first topic author, Mike West Monroe, does say some things that I believe are incorrect, and here are some corrections to his incorrect statements: 1.) The IGeneX laboratory does not find positive results to all the Lyme disease tests that they run; 2.) Dr. David Martz is a real person and he was still alive as of March 15, 2010 (according to a document that is linked to this document in the “Item 3” page, as well as to a lack of announcements of his death as of an August 20, 2010, Internet search); 3.) ILADS is a legitimate medical organization composed of doctors and scientists who have good intentions and honest ambitions (to generalize – of course it is always possible to find a rotten apple in a barrel – but ILADS has a good reputation). For some bios of Dr. Martz and other doctors and researchers who will be participating in an October, 2010, ILADS Annual Scientific Conference, see: www.ilads.org/lyme_programs/includes/include-short5.htm; and also see the ILADS conference program schedule: www.ilads.org/lyme_programs/includes/include-short4.htm.

A case study was published about Dr. Martz’ recovery:

“Motor neuron disease recovery associated with IV ceftriaxone and anti-Babesia therapy” by Harvey and Martz, Acta Neurologica Scandinavica, February 2007, Volume 115, Issue 2, pages 129-131. See:  http://onlinelibrary.wiley.com/doi/10.1111/j.1600-0404.2006.00727.x/abstract

There is also some negative information about Dr. Martz and especially about a PA (physician assistant) who took over a medical clinic previously run by Dr. Martz, and who was treating some patients with ALS for Lyme disease. See:

http://alschronicle.blogspot.com/2009/03/ok-this-one-long-time-comingmindywhy.html. Also see:

http://alschronicle.blogspot.com/2009_12_13_archive.html

(More information about Dr. David Martz can be found within the “Item 3” page.)

As to comments about the character of Dr. Bach (as described in the PDF document mentioned above titled “Gregory Bach is offering false hope to ALS patients”), I have no personal knowledge. However, both the positive and negative comments about him sound plausible. I have personally witnessed other doctors displaying different but equivalent examples of unusual or negative behaviors that were not in the best interests of their patients, so I know that these things can happen.

Still, even if the complaints about Dr. Bach are accurate, I don’t think people with ALS (PALS) should let that discourage them from trying to learn whether or not Lyme disease has anything to do with their medical condition. Even if Lyme disease does not “cause” ALS at all, what if you were one of an extremely small percentage of the people diagnosed with ALS who actually was dying from undiagnosed and untreated Lyme disease? Lyme disease can and does kill some people, so that could actually be the case for some people who have been diagnosed – perhaps mistakenly – with ALS. The important thing is to examine all potential causes of your illness. And, if you choose to undertake any treatment, first learn as much as you can about the treatment and any possible risks associated with it, and learn everything you possibly can about how to minimize those risks. And, do your best to find a good doctor!

I found many documents mentioning Dr. Gregory Bach by doing the following Google Advanced Search:

Find web pages that have…

            all these words:                         ILADS Lyme

            this exact wording or phrase:     Gregory Bach

Need more tools?

            Results per page:                      100 results

            Language:                                 English

Martin Atkinson-Barr, in his quoted comments above, referred to “the Halperin paper which finds a statistically significant number of Bb [Borrelia burgdorferi] positive patients with ALS” so I tried to find that paper. As I discovered, Halperin co-authored many papers, so I can’t be certain to which paper Atkinson-Barr was referring. However, it may be this one:

“Immunologic Reactivity Against Borrelia burgdorferi in Patients With Motor Neuron Disease” by Halperin, et al., Archives of Neurology, May 1990, Volume 47, Number 5, pages 586-594:  www.ncbi.nlm.nih.gov/pubmed/2334308?dopt=AbstractPlus. A scanned version of the complete article can be found at:  www.actionlyme.org/ALSLYME47.htm. Studying this densely written article reveals some of the following pertinent points:

Multiple groups of ALS patients were described in that article. Out of those groups, one group of 24 ALS patients had cerebrospinal fluid (CSF) examined (with more than one laboratory method) for Borrelia burgdorferi (Bb), and 21 of the 24 patients had some kind of positive Bb result. “Lyme-seropositive patients received intravenous ceftriaxone (2 g/d for 14 days [18,19]) to treat possible nervous system infection with B. burgdorferi.” In “Table 2” they show many details about 21 patients who seem to be the patients referred to in the text (whose CSF was examined and who were then treated with ceftriaxone), including “Follow-up” which was at a wide variety of intervals “After Treatment.” The “Follow-up” part of Table 2 showed that, of the 21 Bb-positive ALS patients treated with ceftriaxone: 3 improved; 8 showed either no change, or were too ill to notice a change; 1 had no follow-up information; 3 were worse; and 6 were deceased. (Keep in mind that the current general opinion of Lyme disease experts is that two weeks of antibiotic therapy is totally inadequate for the treatment of Lyme disease.)

On pages 590-591 of the article it says (about a subset of the previously described group of 21 patients):

“Fourteen of 15 seropositive patients received antimicrobial therapy (ceftriaxone, 2 g/d intravenously for 14 days). […] None of the patients had typical Herxheimer’s reactions to the antibiotic therapy, although in 3 patients neurologic symptoms appeared to worsen while receiving antibiotics or shortly thereafter. These 3 patients all had prominent bulbar dysfunction at the time antibiotic therapy was initiated. Two […] died within 1 month of treatment and the third […] required intubation within days of beginning ceftriaxone therapy.

“All patients have been followed clinically since treatment. Five patients were able to undergo quantitative motor testing. One additional patient who did not undergo quantitative testing has clearly improved […]; two patients who were tested quantitatively […] appeared to improve. One additional patient remained relatively static for 7 months of follow-up, the other 2 patients are probably declining. Overall, five of the treated patients have died, four are intubated, three appear to have improved, duration of follow-up is too limited for two, and the remainder either have worsened or are so functionally limited that it is difficult to perceive a change. All who improved were treated early in the course of the disease, at a time when they had mild-to-moderate lower motor neuron type dysfunction. All who deteriorated dramatically had much more advanced disease, with prominent difficulty swallowing and speaking prior to treatment.”

On pages 593-594, the end of the article says:

“The most difficult observation to reconcile with our initial impression that Lyme seropositivity was irrelevant to these patients’ neurologic disease has been the apparent objective response of three patients to antimicrobial therapy. Amyotrophic lateral sclerosis normally progesses inexorably[38]; to observe even a quantifiable plateau would be surprising. Even in these three patients, the improvement appeared to be limited to lower motor neuron function. Established bulbar dysfunction has progressed in all patients who were treated – and in fact, may have been accelerated in several. Since treatment of Lyme borreliosis and other spirochetal infections is frequently associated with a Herxheimer-type reaction, [39-41] this acceleration, too, may be of some significance.

“The simplest explanation of these observations would be that B. burgdorferi infection may be associated with a motor polyneuropathy. It is well known that this infection can cause both a polyradiculoneuropathy and encephalomyelitis, [42] and the coincidence of these two syndromes might mimic MND [Motor Neuron Disease]. More important, since most of our seropositive patients had a predominantly lower motor neuron picture, it may be that most of this association could be explained by a motor polyradiculoneuritis (presumably with wasting of the ventral roots).

“It seems unlikely to us that infection with B. burgdorferi is a frequent cause of MND. Even in patients who are seropositive for exposure to this organism, we believe this may often be coincidental. However, there does appear to be a discrete subset of patients with predominantly lower motor neuron-type involvement, living in hyperendemic areas, who do appear to be significantly more likely to have immunologic evidence of exposure to this agent than do controls. Some of these patients do appear to improve if treated with antimicrobials early in the course of their illness. Patients with more severe neurologic dysfunction do not respond; those with severe bulbar dysfunction may actually be put in jeopardy by such treatment. In many of these patients, it is possible that this infection may play a role. We believe far more extensive clinical, immunologic, and, above all, pathologic studies will be necessary before this issue can be completely resolved.”

Other articles of interest can be found with a Google search on the words: ALS Lyme Halperin

See:

“ALS and Lyme Disease: Questions from Patient[s] and Families – Responses from Medical Experts” by the Rocky Mountain Chapter of the ALS Association: www.alscolorado.org/file.php/313/ALS+and+Lyme+disease.pdf

“Lyme Handbook: Your quick reference guide to all things Lyme related. 410 – Lyme & ALS” (This document repeats some of Martin Atkinson-Barr’s text but adds some other interesting items.) See:  http://lymehandbook.com/index/400-misdiagnoses/450-lyme-als/

“Lyme disease serology in amyotrophic lateral sclerosis” by Qureshi, et al., Muscle & Nerve, October 2009, Volume 40, Issue 4, pages 626-628:  http://onlinelibrary.wiley.com/doi/10.1002/mus.21438/abstract

A list of abstracts related to Lyme disease, ALS and other neurological disorders can be found at:

www.personalconsult.com/articles/researcher-info-on-amyotrophic-lateral-sclerosis.html.

To change the subject back again to the ILADS press release at the top of this “Item 1” section, above, the “mixed results” to “treatment with oral antibiotic therapy” given to ALS patients that was described may be due in part to the fact that Borrelia burgdorferi is a pleomorphic organism that changes form within the body. (For information about the pleomorphic changes of Borrelia burgdorferi, see an article called: “A Life Cycle for Borrelia spirochetes?” [also referred to by the title “Spirochete Life Cycle?”] by Alan B. MacDonald, MD: www.stcatherines.chsli.org/lifecyclepaper.pdf. Some definitions of “pleomorphic” include: “able to assume different forms” [www.merriam-webster.com/medical/pleomorphic] and “referring to a variable appearance or morphology” [http://medical-dictionary.thefreedictionary.com/pleomorphic].) Some pharmaceutical antibiotics are more effective at treating one form of the organism and others are more effective at treating other forms, or phases, of the organism. So, that can at least partly explain the differing results to Doxycycline and metronidazole and Tinidazole described in the ILADS press release above. And, the patient who “rapidly succumbed” could have been harmed by the toxicity of the antibiotic itself, or by the toxins released from the dying pathogens that were killed by the antibiotic, or by a combination of both possible toxicity problems. All of these potential problems will be explained in detail in some of the following documents on this web page, so look at the other “Items” for more information.

Here is an ALS forum that includes a post from “Ter” on May 12, 2006. S/he says: “I was diagnosed with Bulbar ALS on August 15, 2005. … I had fasiculations everywhere, even in my lower body. … My neuro-guy told me to get my affairs in order. In October I had a test for Lyme disease which came back positive. Since then I’ve been working with Lyme docs. They determined I have Lyme and 2 co-infections (Bartonella and Erlichia). The Lyme Docs say the ALS diagnosis was an error. …” The post says more, and there are some follow-up questions and replies from “Ter” on later dates on this same web page. See: https://als.net/forum/Default.aspx?g=posts&m=289536

See this article by Ginger Savely, FNP-C, titled “‘MARNIE’ The ALS/Lyme Conundrum” published in the March 2008 issue of Public Health Alert:  http://betterhealthguy.com/joomla/138expanded  (Click on one of the links to the PDF document of this full issue of Public Health Alert, and then find the beginning of the article on the bottom half of the first page.)

Also see this first-person essay by Sue Massie where she describes how she developed a severe “ALS-like condition” and later learned she had Lyme disease. She was treated and improved remarkably, and she is now “dedicated to helping others heal from Lyme”: http://betterhealthguy.com/joomla/70one

In this essay by Scott Forsgren on his website, he says “I was told I had MS… I actually had Lyme Disease!” He also says, “MS, ALS, Parkinson’s, Alzheimer’s and a host of other diseases are, in my opinion, ‘labels’ that are attached to someone that may actually be suffering with chronic Lyme disease. That was certainly my experience.” See:  http://betterhealthguy.com/joomla/topics/multiple-sclerosis

Forsgren’s website, http://betterhealthguy.com/joomla is a great website about Lyme disease. Search his site for other documents mentioning ALS.

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