I was prepared for hostility, as I am familiar with the initial fate of every unorthodox idea. I am not made of porcelain so I thought I was prepared for a hearty discussion of the ideas and arguments presented in the book. Instead there were ad-hominems and allegations of malfeasance.

The essence of the now deleted thread went like this:

Me: “If you want my free book on Lyme as a possible cause of ALS then email me.”

(My email address was deleted within a day.)

FM1: “Your book must be nonsense.”

FM2: “Post your book here, I’m interested.”

FM3: “You are rushing us, and you are spamming, and we don’t trust you.”

Me: “Sorry. You keep the PDF forever. No obligations of any kind.”

FM4: “Post your book here. We won’t email you because we don’t trust you.”

(Up to this point, I had intended to start selling the book in 2012 for 19 dollars until I had recouped my pre-paid five-year registration and three year hosting for this domain, and then offer it for free or reduce the price to a few dollars. But I really do not need the money and I decided that, faced with so much scepticism, it would be a better idea just to make the book free, so that more people would be able to benefit from it.)

Me: “OK, I’ll make the book free forever, it has no ads, here is the download link.”

(This posting was soon deleted)

FM5: “You are a fake research journalist with a sorry excuse for a book. You used Wikipedia and Google, which is wrong. Facts can only be found in libraries, and by talking to professors. I will use your book to make fun of you with my friends. You made everything up. You are trying to rob people with ALS of hundreds of thousands of dollars and get them killed faster than ALS already does.”

FM6: “You have a pair of great big fuzzy testicles. You plagiarized your book with your crazy theories. You are a Copyright violator. You have no decency. You reproduced some usernames from this forum in your book. You are despicable. I will warn the ALS Untangled forum to pre-ban you. You are a quacktard. What guts you have to come here.”

FM5: “Quacktards…. I am sooooooo stealing that!“

Me: “Of course I mentioned my sources, that’s customary in research and journalism.”

FM7: “I did not see your book but you clearly are a hopeless amateur.”

FM8: “I’ll shut the tread down. You stole some blue from this forum, which is illegal. Your book contains a link to your wellness site, which is spam”.

(Not true, the only link in the book is a link to this site and not to the commercial part of my web presence. One day after the thread was closed, it was deleted, but I saved a copy here.)

After I recovered from the shock, I forwarded my husband the thread and he discovered that the forum members who had ganged up on me were routinely doing this to many first-time visitors like myself. People asking whether their symptoms could be ALS, people asking for possible causes of ALS. He showed me this posting, where an apparently severely ill person was mocked and insulted by the same person who had mocked and insulted me. Some hours later, this posting appeared, again highly abrasive and insulting to a newbie, again the abuse was from the same forum member. And there we have the problem with forums: They need moderators because otherwise they’ll be swamped by spam and trolls. But not all moderators have the wellbeing of the community in mind. Some have their own agenda, are not fit for the job or worse: Bullying is their favorite passtime. A forum frequented by dying people is perhaps not a very tolerant forum. A forum with a lot of bitterness. So I understand.

The irony is that while the forum moderators falsely accused me of spamming with financial motives, ALSforums.com makes money peddling expensive quackery to ALS- and Lyme patients, and they stuck their commercial rubbish right into my posting:

The first commercial product he is making money with (he will receive up to several dollars for every click) is for “resonant light” that should cure Lyme disease. He also makes money when you click on a link that sells super-expensive treatment that claims to improve ALS for a few weeks. I conclude that alsforums.com is a company that makes money being an advertising platform for questionable products that capitalize on the gullibility of their readers, and that they like to keep it that way. For the rest – people haven’t changed – banishment by the inquisition is now called “moderation”.

ALS.net has classified a mention of this site by one of its members as “Irrelevant to ALS”. ALS.net is a for-profit organization, trying to patent their own symptom relievers for ALS. Therefore, ALS.net has a financial stake in ALS not being curable with antibiotics. ALSuntangled.com has dismissed my book even before they read it. A statement on their site reads: “There is no convincing evidence that ALS can be caused by Lyme disease”. This in spite of the half dozen published, peer-reviewed medical articles in my book that prove otherwise! Clearly a site with a hidden agenda, when they deliberately lie and deny the evidence in medical literature that Lyme in some cases causes ALS. ALSuntangled is funded by, and a front for organizations that have a financial stake in ALS not being curable by antibiotics, because they’re working on patentable symptom relievers. There is a lot of money to be made with symptom relievers for ALS, especially because the WHO predicted that we will see ALS grow exponentially to epidemic proportions in the the coming years.

The moral of the story is that if you want to figure out what at least some manifestations of ALS are caused by, an ALS support forum is not the place to go to. Try a Lyme forum instead. Someone posted today on one of those ALS forums: “Is als-cure a scam?”. What kind of scam would that be, when the site or the book isn’t selling anything? You think I would spend an entire summer researching and writing a book that has no advertising, downloadable for free on a site that has no advertising, paying for research papers, the site and the ISBN number, out of a perverse sense of satisfaction to sow doubt in the mind of sick people? If there is a scam, it’s als.net, alsuntangled.com and alsforums.com. They are the ones censoring peer-reviewed, published medical articles, and then lying in your face, claiming that no such research exists.  When eleven pALS say they got cured with antibiotics, the ALS forums claim that I am making that up – in spite of me providing the names and websites of the ALS patients involved. Educate yourself before it’s too late. I never claimed to have evidence that all ALS is caused by Lyme neuroborreliosis. Just a significant percentage. It would be better if people would read the book – all of it, including the materials linked to in the more than 100 footnotes – before censoring all mention of it and shouting “conspiracy theory” or “scam”. If you are a member of a Lyme-related forum: Please post a link to this page, the site or the book.  It is a disgrace that neurologists keep refusing to (properly) test for Lyme disease but arrogantly and lazily hand the patient their death sentence. Six out of seven neurologists never test an ALS patient for Lyme. This is not a number I made up – it comes from self-declared ALS experts themselves and the figure is documented in my book.

UPDATE: The companies that run the ALS forums have banded together in an attempt to find ways to remove this site and the book from the Internet. Even though everything in the book is protected speech under Fair Use, they hope they will be able to somehow find a way to get rid of the book by claiming privacy-, TOS-, or “look and feel” violations. It shows how desperate those multi-million dollar corporations are to hide at least part of the truth about ALS. It’s not a crazy opinion they’re trying to bury – it’s peer-reviewed published medical research, key ALS/Lyme data points and the statements and experiences of people with ALS and Lyme.

Rob Goldstein’s company has been very active in fundraising. In fact, their fundraising team looks bigger than their science team. Is that because they want to find the cause or cure for ALS, or because they like money?  From his CV: “Job entails working closely with the board and senior management to develop and execute a myriad of promotional and marketing projects. Print and Online Marketing/Advertising, Corporate Cause Marketing, Corporate Sponsorship, Government Representation and Affairs, Media Pitching and Press Relations.” and “…with whom I worked closely with to grow fundraising activities, create new programs helping to triple its annual income three-three fold to nearly $1.5 million in 2006.” Do the people involved in the ALS-Lyme censorship have ALS at all? How could they be running those companies and forums all those years? ALS-TDI is a “non-profit”, meaning the profits disappears in the pockets of people such as the management team. Non-profits don’t pay any taxes, isn’t that great! And focusing on the non-existing genetic etiology of sporadic ALS safeguards the inflow of cash until their retirement – or until people stop donating to what can at best be called pathological science.

It is rare to find reports in medical literature of cases of Borreliosis-related cases of motor neuron disease that cleared up with antibiotics, but they do exist: ^[1] Anecdotal evidence abounds however:

“I have to chime in here, my brother was progressing inexorably, got on Ceftriaxone, and his progression slowed dramatically…I’m convinced my brother would have been dead today if he wouldn’t have started Ceftriaxone.”

http://www.als.net/forum/Default.aspx?g=posts&t=48016

“My mother has been treated with various antibiotics since December because of infections/Pneumonia. What can I say? Her fasciculations have disappeared completely. My mum can move her left leg again, which was impossible before. Of course, this is sporadic and especially a Placebo effect, you will say, though my mum has never even heard about anything that has to do with antibiotics and a possible positive effect in ALS.”

http://www.als.net/forum/Default.aspx?g=posts&t=44041&p=6

“I was ALS diagnosed with ALS a few months ago but have been on Ceftriaxone and am feeling much better. I’ve regained strength in my legs, swallowing has much improved but the muscle atrophy in my shoulders is about the same. Does this mean I don’t have ALS?”

http://www.alsforums.com/forum/members/notals!-page2.html#vmessage12705

“I saw a total of 12 doctors before someone decided to treat me for Lyme disease and he tested me twice and it came back negative twice, but he was forward thinking enough to start me on the antibiotics anyway. I have been on antibiotics for three weeks now and I am 90% back to normal. I THANK GOD above that this has worked for me. Getting a diagnosis of ALS is devastating.”

http://www.alsforums.com/forum/als-healthcare-professionals/13709-misdiagnosing-als.html#post146202

“My husband was diagnosed 6/07. He has been confined to bed and wheelchair for over a year now. He can no longer speak or swallow. He has been on feeding tube since June 2009. He lost use of his arms/hands, he can move his legs but cannot stand. He also was ALS diagnosed with Lyme disease and is being treated for it also. He had improvement on IV Rocephin but when he was taken off it because of improvement he went downhill fast.”

http://www.alsforums.com/forum/do-i-have-als-als/10532-als-lyme-help.html#post103744

On ALS forums, it is almost common knowledge that “Everyone tests positive for Lyme” when the tests are sensitive enough, such as with the IGeneX test, that also includes bands 31 and 34, which are most specific for Borrelia and are excluded by other Lyme tests manufacturers. The below two ALS patients on als.net had positive Lyme tests:

RL Schafferr: “All Lyme tests come back positive..mine did..And I had 3 from reputable labs.”

GusGargoyle: “I went 7 years with my Lyme before getting treatment and this is the bulbar kind.”

Posters “Bubba” and “Debbie”, “PatMurray12″ are also Lyme-positive on that forum, as well as many others. On other ALS forums we see the same situation: ^[1]

Degenhardt:  “In 2003-2004 I had Lyme disease. I have heard from another person whose brother died of ALS that he had Lyme prior to ALS. I do not have Lyme now. I do have a new diagnosis of ALS”.

..and this one: ^[2]

davikingdawn: “I had to be tested three times, before the lyme was found, it is very tricky to find. They finally found it on the Western Blot test.”

..and a friend of this one: ^[3]

IluvNY: “Hi all, a friend was diagnosed with ALS a few weeks ago. He shared his report with me from the neurologist and after researching and seeing the info regarding ALS and Lyme disease, it caught my attention that it states in the neurologist’s report that he tested positive for Lyme IgG.”

..and someone’s nurse’s friend’s husband (very troubling..): ^[4]

limegreemphysicist: “Also, one of my doctors was caught up in a sticky situation in which my nurse’s friend’s husband was diagnosed with Lyme’s disease, then ALS, only to be re-diagnosed with Lymes. By the time they got back on the right track with Lyme’s he was already too far gone and is not being treated for Lymes and is bedridden.”

This person has “Lyme and ALS”: ^[5]

Phil M: “I thought for sure I had Lymes when I started having symptoms. I had Lyme symptoms for years, and in the summer of 07, I got bit by 2 ticks, and the bite sites for both of them swelled up and turned red. Shortly after I had a really high fever that only lasted about 24 hours. Anyway, about 2 weeks later my speech started slurring. My doc did a Lyme treatment, but only the 10 day Doxy. Long story short. I ended up seeing a neuro. He said Lyme or no Lyme, you still have ALS”

This woman was treated for Lyme in her teens, is still Lyme-positive and now has ALS: ^[6]

elemkay80: “OK, I spoke with my first neurologist today and got interesting news. My Lyme test is positive, but he said not to get my hopes, that he expected it would be (?). I had a confirmed Lyme tick bite when I was about 10 or 11yo (I’m almost 28 now) when I was at summer camp. Had the bulls eye rash on my arm and everything. I was put on antibiotics and that was the end of that. Never thought about it again, other than keeping in my head that it had happened. The rash went away and I never had a known symptom. So now I’m being diagnosed with ALS 17 years later?”

patricia1 answers to this: “I had a tick bit 15 years before ALS and was treated for lymes as well :-\ I told my neuro and she said that since it was treated it was not related to the ALS. So I feel like you do. Confused!”

ALS patients who test positive for Lyme generally accept it as a coincidence or at best theorize that having been exposed to the bacterium may have predisposed them somehow towards ALS. “If ALS would be Lyme disease, the various antibiotics trials for ALS would have shown some success”, they say – totally ignoring the fact that those trials used doses and treatment periods that have been reported by Dr. David Martz to be wholly inadequate in clearing up his Lyme-ALS.

Others say that since they never were bitten by a tick, they can’t possibly have Lyme – even though 70% of diagnosed, CDC-reported Lyme patients do not remember a tick bite. It may very well be that Lyme can be transmitted by additional means. In 2009, a Florida lab found mosquitoes carrying the Lyme spirochete. Fleas are carriers as well. Lida Mattmann found Borrelia spirochetes in tears. Borrelia has been found in perspiration, the placenta, blood and semen. Borrelia bacteria have even been found in dust from Africa.

The trial’s fatal flaws were its short treatment duration in regard to how long severe neuroborreliosis needs to be treated, as well as the insufficiently low dosages to treat neuroborreliosis and the murky way the dosages were lowered as soon as the patient experienced discomfort or deterioration. Because the dosing of the antibiotic was done in such a way, that as soon as a significant bacterial dieoff was achieved, the antibiotic was either withdrawn or its dosage reduced. From the study:

In our opinion, this makes the study useless to determine the efficacy of Minocycline against ALS caused by Neuroborreliosis, because: “The highest tolerated dose” is not a useable designation of quantity, and virtually guarantees that none of the ALS patients received a bactericidal or bacteriostatic dose, because before such a dose is attained in the CNS, extremely unpleasant dieoff effects will manifest themselves. As soon as these effects were deemed “adverse” by either patient or physician, the dose was lowered or the antibiotic was withdrawn for weeks at a time, inevitably resulting in complete treatment failure. The only effect that can reasonably be expected of such an experiment is to “stir up” the spirochetes – to cause some serious herxing but not to significantly lower the bacterial load. On the contrary, such an approach would likely result in more, not less cerebral inflammation, as a few spirochetal fragments would trigger an inflammatory immune response. Spirochetes would also tend to migrate to tissue with lower antibiotic serum concentration, causing damage to neurons, as they are often intracellular (embedded inside neurons).

Note how the study mentions that as soon as a serious Jarisch-herxheimer reaction would occur, the Minocycline would be stopped permanently. This approach guarantees that none of the ALS patients would ever improve, if the cause of their symptoms would be Lyme disease. On the contrary, it guarantees that some would deteriorate, as a result of the extra inflammation caused by the “waking up” of the immune system and the “shaking up” of the bacteria.

Oral Minocycline is even at the maximum dosages administered in the trial not to be expected to cure or even significantly alleviate the severe neurological damage of Neuroborreliosis. Chronic (antibiotic-resistant^[1]) Lyme neuroborreliosis is amply documented in medical literature.^[2]

We made a screen capture of the graph that showed the decline of the ALS patients treated with Minocycline versus the decline of an untreated control group: (The black “treatment end” line is ours)

This graph is used to justify the conclusion that Minocycline is harmful to ALS patients, because some ALS patients deteriorated much faster on Minocycline than without. As we already stated, the design of the study made it impossible for any ALS patients to be properly treated for Lyme neuroborreliosis, because as soon as a Jarisch-Herxheimer (“dieoff”) reaction set in, treatment was either stopped permanently or temporarily, or dosing was reduced. What remains is the Jarisch-Herxheimer reaction, causing an accelerated demise of especially bulbar ALS patients, because their symptoms worsen due to the dieoff of Borrelia spirochetes in their brains.

Sure it is unusual – that is why for each case of ALS, there are many more cases of Lyme! It is of course totally irrelevant how great the statistical likelihood is that neuroborreliosis causes ALS symptoms. There are roughly 30,000 yearly cases of Lyme reported to the CDC in the US, with an additional 60,000 cases reported as “probably Lyme”. Experts estimate that the actual numbers may be three to ten times higher. Sticking to the CDC data, it would mean that if Lyme only in about 5% of cases ultimately causes ALS symptoms, that all ALS cases would be attributable to Lyme disease. And if Lyme disease only in 1% of cases results in ALS, then still about a quarter of all ALS cases would be caused by neuroborreliosis. 1% would be a good guesstimate, as the Halperin study saw 12.5% of ALS patients strongly improving on antibiotics (Ceftriaxone), and 12.5% rapidly deteriorating – both indications of a bacterial infection in the CNS.

The first paragraph of the Halperin paper tells us that at least 12% of bulbar ALS patients have evidence of Borrelia bspirochetes in their brains: “Cerebrospinal fluid was examined in 24 ALS patients – 3 (all with severe bulbar involvement) appeared to have intrathecal synthesis of anti-B burgdorferi antibody.”

What does this mean in layman’s terms? From Wikipedia:

“Intrathecal is an adjective that refers to something introduced into or occurring in the space under the arachnoid membrane of the brain or spinal cord. For example, intrathecal immunoglobulin production means production of this substance in the spinal cord.”

So those three ALS patients with severe bulbar involvement had Borrelia burgdorferi bacteria inside their brain or spinal cord, because beneath the membrane protecting those organs, their immune system was producing antibodies against those bacteria. Less than 1% of the general population tests positive for Lyme, so 12.5% positivity clearly suggests actual infection instead of a statistical anomaly.

25% of ALS patients receiving the antibiotic Minocycline deteriorated markedly. The oral antibiotic Minocycline, especially in the dosages used in the trial, is a less effective antibiotic than IV Ceftriaxone and therefore the spirochetes may merely have been “stirred up”, trying to migrate to lesser tissue concentrations. This understandably wreaks havoc in the brain stems of ALS patients. Some deteriorations may be attributable to Jarisch-Herxheimer reactions. The study made it impossible to identify improvement in individuals and only presented a general trend.

Doctors often use statistics as an excuse not to test for troublesome-to-treat conditions. Specifically, they abuse a general lack of understanding of statistics in the average patient. How many percent exactly is this “unlikely”, and can the good doctor back up his opinion with facts? As shown, 5% would account for all ALS cases. 1% would account for a quarter of all ALS cases. Is 1% unlikely enough? Opinions are only as good as the hard data to back them up. Using the same insane argumentation of “Lyme rarely causes ALS”, doctors routinely refuse to test the ALS-diagnosed for Lyme disease. In their pathological circular logic, they perpetuate their misconceptions.

Because if you don’t test for Lyme, how will you find out whether a case of ALS is caused by it? How can you maintain accurate statistics of Lyme-ALS when you refuse to test? It’s like claiming that criminal psychopaths don’t commit any more murders than ordinary people, while refusing to test convicted criminals for psychopathy. Again it’s just an opinion, and doctors with such unfounded opinions simply say: “I don’t want to get into the can of worms also known as Lyme disease – let’s just keep things nice and easy and not even go there”.

Statistical likelihoods are irrelevant when the life of a person is at stake. The cost of a Lyme test is trivial compared to its potential to save the life of the patient, unlikely or not. And we say it again: All commonly used Lyme tests are so unreliable as to be worse than useless. If you do get tested, make sure you do an antibiotics-provoked test done by IGeneX, Bowen Research or a similar lab that offers reliable tests – not the rubbish used by mainstream labs.

IGeneX stance is that Lyme testing according to the deliberately limited “Dearborn” criteria finds only 8% of Lyme infections. IGeneX’s explanation :^[15]

The problem with “ordinary” Lyme tests is that they have been made so insensitive that they are worse than useless. Western Blot tests are usually specific to the B31 strain of Borrelia only, while there are many other strains. And they do not look for band 22, 23, 25, 31 and 34, even though those bands have been patented as the most specific bands for Borrelia.

Therefore, the very best Lyme tests that are commonly used suffer from 69% false negatives, and that is best-case. with ALS patients, that figure may well be much higher, because of documented OSP variation in the brain – an immune-privilleged site. Meaning, there are no IgM antibodies and very little IgG antibodies circulating any more, months or years after infection, but an active infection is firmly established in the CNS. A PCR of cerebrospinal fluid usually turns out negative as well, because spirochetes avoid this fluid like the plague, as Dr. Øystein Brorson has shown.

Tom Grier is a Microbiologist at the University of Minnesota Medical School, Duluth, Minnesota, USA. He explained why Lyme tests are notoriously unreliable – even less reliable than tossing a coin. ^[16] Dr. Grier wrote in even much deeper detail ^[17] about the deep inherent flaws of Lyme testing.

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”.

Not too long ago, scientific research papers were freely available online but nowadays, most are zealously guarded by a few publishing conglomerates that charge about the same for an article as you would expect to pay for the latest music DVD of a superstar. When you purchase, you give them your name, address, email address and IP address and have to agree not to reproduce the article. The whole system is designed to keep medical breakthroughs secret to the public in general and journalists in particular, and to intimidate and prosecute those who seek to uncover such secret knowledge.

No wonder, that the average person with ALS has no inkling of the fact that there is solid research, showing that ALS is strongly associated with Lyme disease.

The Halperin paper mentions in its first paragraph (green box below) that nine out of nineteen ALS patients tested positive for Lyme. The notoriously unreliable ELISA test was used, a test with an anacceptably high proportion of false negatives. So that would be 47% of ALS patients testing positive for Lyme.

47% would be an astonishingly high number by itself, but the paper’s authors – possibly afraid of the consequences to their careers if they were to pursue an “ALS is Lyme” angle, decided to “cook the books” and only casually mention, buried further in the paper (red boxes below), that in fact it was 21 out of 24 ALS patients that tested Lyme-positive, making it 88%, or almost nine out of ten patients. Since the false-negative rate of the tests used is notoriously high, we are justified in concluding that most likely, every single ALS patient in their study was Lyme-positive.

The authors decided to pretend that cell-mediated immunity to Borrelia did not count as “Lyme-positive”, even though it is a certain indicator of internal exposure to the bacterium.^[1]

What was the likelihood, in 1990, the date of the study, of a person with ALS testing positive for Lyme disease? There were around 8,000 reported cases in 1990. IgM antibodies imply active Lyme infection, so we would expect to see only around 10,000 Americans testing positive for IgM antibodies. IgG antibodies last much longer, so we will take all reported cases from 1982 to 1990 into account, approx. 35,000 patients testing IgG positive. Reported cases are largely based on positive test outcomes rather than clinical diagnoses, so we do not have to correct for false positives. However we do have to correct for actual cases vs. reported cases. The most alarmist estimations now in 2011 are that there are ten times more Lyme cases than reported. Assuming that in 1990, Lyme infections occured five times more often than reported to the CDC, we would expect 5 x (8,000 + 35,000) = 215,000 Americans to test positive for Lyme in 1990.

Source: CDC

In 1990, the US population was 249 million people. The percentage of people testing Lyme-positive would therefore be roughly estimated as (215,000 / 249,000,000) * 100% = 0.086%.

The mainstream medical establishment claims that chronic Lyme disease is very rare, and that Lyme disease certainly is generally not the cause of ALS. Therefore, according to their own statistics, if Lyme disease did not cause ALS, one would expect to see approx. 0.086% of ALS patients testing positive for Lyme disease. Instead, 87.5% of ALS patients tested positive in the Halperin paper. At least 21 out of 24 ALS patients had been infected with the Borrelia spirochete. Fasle negatives are very common, false positives are not.

Let that sink in for a moment. Instead of finding 0.086% Lyme-positive ALS patients, we find 87.5% Lyme-positive ALS patients in a large enough sample to be statistically significant. That is 87.5 / 0.086 = 1017 times as many Lyme positive ALS patients as we expected to see. According to the Halperin study, American ALS patients have about a thousand times greater chance to be Lyme-positive than the average American. Not 1000 percent, mind you. 1000 times. That is a 100000% greater occurence of being Lyme-positive. A hundred thousand percent more.

Critics may point out that in fact, about 1% of the US population tests positive for Lyme disease, instead of the statistics-based guesstimate of 0.086%. That would still mean that the ALS patients from the Halperin paper were a hundred times more likely to be Lyme-positive than the general population.

This means that which ever way you interpret the numbers, they state a solid case and that in the face of such overwhelming evidence, Lyme should be assumed the underlying cause of ALS. Absence of evidence is not evidence of absence, so a paper by the infamous anti-Lyme activist Dr. Steere who claims to have found no ALS patient testing positive for Lyme can not be considered counter-evidence, but merely evidence of ulterior motives.

We stress that unlike Atkinson-Barr’s testimony, the Halperin paper is not merely anecdotal evidence by someone who is not even a medical doctor – it is a peer-revieved, published medical study conducted by a team of qualified medical scientists, using control groups and other safeguards.

And even though their conclusion is that Lyme has nothing to do with ALS because they consider their findings to be “coincidental”, we think their findings speak for themselves. Nine out of ten ALS patients were infected with the Lyme spirochete, whereas only one in a hundred random people are. Coincidence?

ALS is most accurately defined as a set of “signs” – objectively quantifiable symptoms. In case of sporadic ALS, the underlying cause is unknown, making ALS not a disease but a symptom description. It is crucial to keep this in mind. It is unfair to patients when they are lead to believe that they are with 100% likelihood suffering from a disease without a cure, instead of a perhaps treatable symptom of an identifiable illness.

Lou Gehrig

One of the reasons why people still believe that ALS is a disease is that ALS is also known as “Lou Gehrig’s disease”. When ALS got that name, it was not yet clear that ALS can be caused by a variety of factors, and that it is assumed to be a symptom of an unknown disease or -diseases. Even though there are countless cases of ALS being caused by Lyme disease, the medical establishment still believes that there is such a thing as “real ALS” and that it has an unknown cause or causes. So far, the only identified causes of Amyotrophic Lateral Sclerosis (motor neuron damage) have been familial ALS and Lyme neuroborreliosis.

Patients should understand that ALS is a symptom, and that ALS has been cured many times with antibiotic treatment. Our book documents eleven ALS patients who cured their ALS with antibiotics. These people have been diagnosed by a neurologist as having ALS, but it turned out their ALS was a symptom of Lyme disease and antibiotics provided a cure.

In up to 15% of cases, ALS patients suffer brain damage to the non-motor neuron parts of their brains so severe that it leads to a dual diagnosis such as ALS-dementia and in an additional 50% of ALS patients, there is still so much brain damage to the rest of the brain that it can be detected in a brain MRI^{[1] [2]}. Research shows that at least two third of ALS patients suffer generalized brain damage in addition to motor neuron damage.^[3]