Myth: ALS is a disease

It may sound harsh but it is the truth: ALS is not a disease - and anyone claiming otherwise will fail to provide evidence to such.

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 disease - a disease or a symptom?

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.

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1.  pappa4    Wednesday, December 5, 2012

hi there....i have been suffering for 2 years now...prior to that the diagnosis was fibromyalgis....now i am being tested for Lyme disease...could i end up with ALS...or is als really a subdisease of lyme? left leg weakness, use a cane about every 5 wks. for a week or so....tingling burning head and body pain, pain in the spine, lower back...buttock and calf spasm in right leg and of course fatigue. any insite from anyone!



2.  Sarah Vaughter    Tuesday, February 25, 2014

Noone knows what causes ALS but we do know that very often, people with ALS also test positive for Lyme. Much more than to be expected if Lyme and ALS were not related. Therefore, ALS can be and often is a symptom of Lyme disease and treating the Lyme also treats the ALS.

I personally think thast there is ample evidence that sporadic ALS is a brain infection and not of auto-immune or genetic origin.

As soon as you display symptoms of neurological illness (including schizophrenia), you should take antibiotics to do an antibiotic-provoked Lyme test as well as to see for 100% certain whether you have a brain infection. Because antibiotics would in that case provoke a strong negative reaction followed by slow improvement.



3.  Steve    Sunday, March 16, 2014

Hello Sarah, I was diagnosed with ALS 16 months ago, I have been tested for Lyme twice both times came back negative. Can you offer any suggestions?
Thank you, Steve, Pennsylvania, USA



4.  Sarah Vaughter    Sunday, March 16, 2014

The standard tests are nearly always falsely negative in case they should have been positive.

Therefore, as I explain in my (free) book, the only way to have a reasonable certainly that Lyme can be ruled out is an antibiotics-provoked, accurate test. Several companies offer such tests, the most well known is Igenex. Remember: If it's not antibiotics-provoked, even their test is unreliable. You MUST be a few days on the CORRECT antibiotics BEFORE taking the test. This is absolutely essential - otherwise don't even bother. The reasons are explained in my book (read about Dr. Marz diagnosis and cure - he tested negative on all tests until he did an antibiotic-provoked one and eventually cured himself 100% from an ALS "death sentence").

Also, if I had an ALS diagnosis, I would care less about tests. Since it's a 100% death sentence, it hardly harms an ALS patient to take the correct oral antibiotic regimen for neuroborreliosis (e.g. 500 mg/day doxycycline) for a while to see whether it's a brain infection or something else.

(When things get much better or worse (Jarisch-Herxheimer reaction in case of spirochetal infections) initially, it may strongly suggest a bacterial brain infection.)

My main site is called "OwnDoc" because I advocate self-treatment, which implies you would have to source the appropriate medication yourself somehow, if will be necessary in an attempt to save your life.



5.  Mila    Thursday, May 15, 2014

My father is diagnosed with bulbair ALS. Are younsaying that he can be cured with antibiotics? Why do people still die from ALS if that is possible? And are you saying that MS also is not a disease, but cureable?



6.  Sarah Vaughter    Thursday, May 15, 2014

I am saying that a very large percentage of people diagnosed with ALS have in fact a bacterial infection of the brain. Proper use of the proper antibiotics during an appropriate period (usually forever), when started early enoigh will prevent such people from getting worse and will make them improve instead.

Both ALS and MS are symptoms, not diseases onto themselves. It has been proven many times that MS is the symptom of a bacterial infection of the brain:

http://owndoc.com/lyme/mult...



7.  Janet    Saturday, August 2, 2014

I was diagnosed with ALS two tears ago and have just tested positive for Lymes. Is the lymes causing the ALS symtons?



8.  Sarah Vaughter    Saturday, August 2, 2014

Yes, when you have been diagnosed with both Lyme and ALS, it usually means that when you manage to control the Lyme, you will not die of the ALS, because ALS is a symptom of another disease, not a disease onto itself.

Since both diagnoses are rare, having both simultaneously means with overwhelming certainty that they are related.

It is of course possible that ALS is a "disease on its own" and that there are a few people walking around with both diseases, but in that case we should see merely a handful of those patients worldwide and not such folks with dual ALS/Lyme diagnoses dying by the hundreds in the US alone, as my research into the obituaries and autopsy reports of people diagnosed with Lyme and ALS shows:

http://owndoc.com/lyme/dyin...



9.  ALS RN educator    Wednesday, August 20, 2014

I would like to have the credentials listed of Sarah Vaughter please.



10.  Sarah Vaughter    Thursday, August 21, 2014

Do my credentials matter, when I am only the messenger? If you wouldn't have been too lazy to read my articles or book, you'd have noticed that nowhere I am arguing from authority. My "credentials" are that I spent a summer paying for medical articles and that I read them and that I investigated what percentage of ALS patients test positive for Lyme disease, how many improve on antibiotics, what MD's and microbiologists published on the subject matter, etc. I need no "credentials" to relay you verifyable facts. If you think the Halperin study was flawed, tell Dr. Halperin. He has a big stake in an opposite outcome because it was opposed to his financial interests and core beliefs. He will likely be grateful if you would point out errors in his work, if you have the "credentials" to identify any.

All I do is bring to public attention the studies by Halperin and others, and Dr. Halperin is well-credentialed. So is Dr. Martz, who cured his ALS with antibiotics. Halperin is like you, he has a financial interest in ALS being "it's own disease" and on top of that, he would be exposed as responsible for the deaths of people when it turns out that ALS can be stopped with antibiotics in many cases. Using the research of an "ALS is not Lyme" Neurologist to prove himself wrong is the most credible data imaginable. There is no better source than a highly respected, highly-credentialled neurologist who believes ALS is not Lyme, and using his own peer-reviewed research data to prove that nearly all ALS patients were infected with Lyme spirochetes.

If you have counter-arguments to the materials I collected from medical studies and ALS patients themselves, post them here. Attacking the messenger because you disagree with the message only demonstrates your lack of counter-arguments.

While you're at it (contacting the researchers and asking them their "credentials"), please ask Dr. Brorson, microbiologist in Norway what his credentials are. He found live Borrelia bacteria in the brains of 12 deceased MS patients. Sample size: 12. Percentage of people in his study with MS that had active Lyme disease: 100%.

Then ask Neurologist Judith Miklossy about her credentials. She found Lyme spirochetes in the brains of just about every patient who succumbed to a neurological syndrome. She found 75% of all Alzheimer to be Lyme disease, and the remaining 25% is caused by oral Treponema, also a spirochetal bacterium.

And then you need to read my article on MS and Lyme disease and ask dozens more researchers their credentials. I list 25 relevant studies.

Then, if you pay attention, you'll notice that quite a few microbiologists specialized in this topic have commented very favorably on my articles. I am not a scientist. I do not do medical research. I am a journalist. I merely republish the already researched and already published facts, in a more accessible format.



11.  Wild grrl    Thursday, August 21, 2014

All I know is they started out with Lyme and some coinfection's and now I have MS. I've been treated for the MS but after a year it seems like I might be getting worse. How do I convince doctors I probably still have Lyme disease?



12.  kj    Friday, August 22, 2014

see a lyme literate medical doctor (LLMD). you can find a list of lyme specialists at www.lymedisease.org. There is a very reasonable chance you might actually have lyme but be sure to see someone who actually specializes in it because they are the best to get to the bottom of the issues you may have. There is so much misinformation out there that many doctors can easily & mistakenly tell you it "couldn't possibly be lyme". you can also see the movie underourskin.com and see that many others there were diagnosed with MS and found out they had lyme and improved with treatment. good luck!



13.  Janet    Friday, August 22, 2014

Awesome! What great info. Each time I see the ice bucket challenge I am posting this website.



14.  Sarah Vaughter    Friday, August 22, 2014

..which is obviously working, because our normal number of visitors/day has always been hovering around 75. Yesterday it was 3200, and nearly all was from Facebook.

I find the ice bucket challenge very saddening because noone looks in the right direction and the money, effort and PR will be wasted..



15.  Debbie    Monday, August 25, 2014

Just wanted to say that I appreciate the information you are providing on your site. However, your site would be, in my opinion, much more believable if you were not advertising/selling things on the same site. I anticipate that you will say that it just covers the cost of the site, etc. , but if your main objective is getting the word out, you may want to rethink your methods.



16.  Sarah Vaughter    Monday, August 25, 2014

The info stands on itself and its credibility is unrelated to what ads we run alongside. We sell nothing useful for ALS patients and we make that clear. My book has no ads and no links to ads. This site had no ads for the first two years and I was still publicly accused in a medical journal to have commercial motives.

I spent an entire summer on the site and the book. I am also an entrepreneur and, busy as I am, greatly value my time. The ads bring negligible revenue but I see no reason to remove them This is a niche site unrelated to anything we sell. The whole reason I could spend so much time on it is exactly because I have a company. My company income made this site possible and that's why the company should have some benefit, even if it's very little. In fact, if it weren't for those ads, we would not legally be able to deduct the expenses on it (such as the purchased studies, the hosting etc.), because now we can claim the entire site to be "advertising" for our company. Which it really is not, but you understand the reasoning. We did the same with ownshrink.com, which basically is a 12000 dollar sponsorship for a very talented fellow aspie, but due to the ads we can deduct it all as "advertising".

I repeat: Medical studies done by third parties stand by themselves. Don't attack the messenger - if you disagree with the message, find fault with the data. I made the site because I have Lyme myself and I wanted to raise awareness. Nearly all websites on medical topics run ads. Those who don't solicit or receive funds another way.

I find your criticism extremely hypocritical, since "ALS organizations" rake in the millions without ever contributing to a cure for ALS patients. This site is literally saving lives and you attack the message by casting doubt on the messenger for running some ads. If you were not disingenuous: Please don't be lazy - read the material instead of a knee-jerk reaction about ads.



17.  Emma Thornton    Wednesday, September 24, 2014

What antibiotics did they take that were effective please .?



18.  Sarah Vaughter    Wednesday, September 24, 2014

Nothing _cures_ chronic brain infections, but the deterioration can be stopped and slowly reversed by taking very high doses of Doxycycline. At least 500 mg/day for a person with normal weight. 600 mg is better. The problem is that at a certain stage of the infection, administering antibiotics will kill the patient because the spirochetes will try to migrate to lower tissue levels, destroying a lot of neuronal tissue in the meantime (spirochetes drill straight through cells when they move). This causes a lot if inflammation as well, adding to the damage. That's why it's of the utmost importance to start with proper therapy as soon as the first neurological symptoms appear. Recovery is _extremely_ slow (takes years) even with mild neurological damage. And stopping antibiotics will very quickly bring back most symptoms. So the treatment is life-long, just to remain alive basically.



19.  Mark    Tuesday, September 30, 2014

You my friend are an idiot at best. I am a neurologist, and would love to sit down and talk to you in depth. People, this woman has no credentials of anything. You claim to spend a summer of research, when there are people who have done greater than 35-40 years of research. Lyme is a disease of the motor neuron you twit, not the brain. If indeed it was a symptom of the brain, you would have BRAIN FINDINGS!!!!, Meaning symptpoms above the level of the bulbar region such as diplopia, hearing loss, vertigo, SOMETHING!!! Give me a break. You're a quack, and you are dangerous.



20.  Sarah Vaughter    Tuesday, September 30, 2014

You wrote "Lyme is a disease of the motor neuron" but you meant "ALS is a disease of the motor neuron", correct?

Well, then you're woofully uninformed and should get your school money back, because in ALS it is the rule, not the exception, to see all kinds of generalized brain damage:

http://www.als-cure.com/als...

Research shows that at least two thirds of ALS patients suffer generalized brain damage in addition to motor neuron damage!

(I provided three references to studies in the peer-reviewed literature). It took me mere minutes to find those references. Imagine what an entire long summer can do.

So I did your homework now. I hope you're man enough to apologize. Where did you get your diploma, "Mark"? Would you mind giving us your "credentials", so that we can avoid your hospital, clinic or practice?

Now of course, even if this were NOT the case, you would still not have a valid point - your argument would still be illogical because the issue here is that a plethora of neurological syndromes with unknown etiology are merely differently expressing symptoms of the same phenomenon: A brain infection. Vasculitis in the cranium, etc.

What you clueless "neurologists" (experts in nothing basically, since you do not know the cause of ANY neurological syndrome, neither do you have a cure) do is take a disease such as Lyme and, depending on what part of the brain the Lyme has infected, classify its symptoms into Fibromyalgia, CFS, Alzheimer, MS, ALS and a whole lot more fantasy-diagnoses to keep your nice little scam going.

So you simply call an infection of mainly the motor part of the brain "ALS", and then claim that "because we refuse to recognize chronic Lyme, it can't be Lyme, ALS is ALS and MS is MS, because we say so". It's like saying that an injured person on the street suffers from "broken-leggitis" or "broken-armitis" or "crushed-headitis" and insisting there must be different causes for it, while I say that they're all hit by motor vehicles (= bacteria). And then you have a "broken-armitis expert" and a "crushed pelvisitis expert" and a "exploded headitis with concomitant severed limb-itis expert" and all eat out of a well-filled trough.

Of course, as in many scams that got out of control, its practitioners often believe in it themselves, because a whole cottage industry has sprung up (patient advocacy groups, charities, professorships, grants etc.) and they all have the same goal: Perpetuating the life of their goose that lays the golden eggs. As a doctor, you're neither a scientist nor an engineer. You basically can't think logically and originally. You are one of those types with boundless respect for authority and you have a talent for learning many "facts" by heart. Admit it: You're a nobody. All you do is prescribe pills and let your patients die agonizing deaths. You are clueless, helpless and hopeless but you have a very big mouth.

As to my credentials: They are irrelevant. If my sister and I witness a murder and we testify in court, is our testimony invalid because we're not forensic detectives? If I find many publications that prove you're wrong, are those publications wrong because I found them, and I am not a Neurologist? If I were a neurologist, you'd still attack me, saying: "The majority disagrees with you".

"Neurologists" are the high-priests of the of the "All Neurological Syndromes Are Caused By The Great Unknown" religion. I deal in facts, not self-serving ideology.



21.  Dee    Friday, December 19, 2014

Why do you state here that both diagnosis are rare? Do you really feel that Lyme is rarely diagnosed? Did you mean maybe, where you are it is? In Nj Where I am, its very prevalent.



22.  cktheman    Tuesday, December 23, 2014

I'm sorry but I just have to reply here. I'm so sick and tired of elitist degree holders demanding "credentials" of people and other phony appeals to authority. This problem is rampant in today's science disciplines.

MANY formally educated individuals are so blinded by established domain knowledge that they are incapable of recognizing obvious answers because they have been taught otherwise.

These same people then turn around and blather about how science is all about testing and observation. Yeah, sure, unless it goes against the party line.



23.  cktheman    Tuesday, December 23, 2014

Yeah, and it was completely insane that the majority of stomach and duodenal ulcers were caused by bacteria. 35-40 years of research indicated there was no way bacteria could survive in the acidic environment of the human digestive tract. Barry Marshall was marginalized and criticized by many of his peers as a "quack".

That is but ONE example.



24.  Mini    Wednesday, January 7, 2015

I've read through this entire conversation and it has been a very interesting read. My father was diagnosed with ALS 3 months ago, his symptoms have shown real fast. How do i determine at what stage he is at? How do I get a doctor to prescribe Doxycycline? You mentioned that while testing for Lyme it must be a "antibiotic-proked" exam, what exactly does this mean?



25.  Sarah Vaughter    Wednesday, January 7, 2015

Doctors are reluctant to prescribe antibiotics and they will certainly be very reluctant to prescribe the high dose needed for Lyme.

Antibiotics-provoked testing for Lyme means taking antibiotics that pass the blood-brain barrier (I can only recommend Doxycycline and Minocycline from own experience but highly-dosed Tetracycline may also work) a handful of days before testing for Lyme. The test needs to be much more accurate than an ELISA or Western Blot. I recommend Igenex for Lyme testing.



26.  Mini    Wednesday, January 7, 2015

Thank you for replying so quickly. I will do everything in my power to see how I can assist my father. Hopefully he had the same outcome as te doctor you speak of. Te hardest thing this far has been, trying to explain to my father that doctors can't do anything for him. It's such a frustrating situation, not only for the person suffering the Illness but for all the family members surrounding him too.



27.  Sarah Vaughter    Wednesday, January 7, 2015

About ten years ago, a good aquaintance of mine, an engineer who worked for the patent office, was diagnosed with ALS. I tried to persuade him to try some antibiotics and see what would happen. He was still in the very early stages at that time. He politely heard me out when I explained in a long monologue about Lyme able to mimick ALS, about the many times that ALS turned out to be Lyme after all, etc.

He said: "I put my trust in my doctors, they know best, I don't want to upset them." I asked him how many ALS patients his doctors had cured. "Zero", he replied. "And you still want to do what they say?". "They will get angry when I start experimenting with antibiotics and I don't think they'll be willing to prescribe them - I'm not even going to ask."

So he fully accepted the death sentence, fully trusted his doctors, who would only help him die, not live. He was not willing even to try to take a handfull of pills in secret, pills I would give him for free. He had given up all hope because his doctors told him to do so.

Note that if a case of ALS is caused by a bacterial infection, that the initial reaction to antibiotics that pass the blood-brain barrier would often be very negative (make the situation much worse, initially). This is why antibiotic trials on ALS patients found that the antibiotics actually caused the premature death of some ALS patients. This strongly points to a bacterial etiology in those patients, who presumably died of a Jarish-Herxheimer reaction.



28.  Mini    Wednesday, January 7, 2015

I totally see what you're talking about. Hopefully my father can try the pills and be successful at feeling even a bit better.

What have been some of the side effects of taking Doxycycline?
Are there any precautions we should take before giving him these pills?

You mentioned you were able to get them for your friend for free. How would I be able to do the same?



29.  Sarah Vaughter    Wednesday, January 7, 2015

Doxycycline causes extreme sun sensitivity, even when in the sun for just a few minutes. Burns occur and it takes days to subside. When stuck in the esophagus, serious damage will occur so it should always be flushed well, and not on an empty stomach either. Long-term taking of Doxy in high doses can cause neurological problems, suicidal thoughts, insomnia and at the highest doses even organ failure after a year or so (known from medical literature, fully reversible and no lasting damage in that case).

However I have taken doxy on a nearly daily basis for 15 years, up to 800 mg/day. Take breaks from it when neurological problems get too severe.

Expired doxy or doxy kept in a warm place for too long can cause severe intracranial pressure and can be dangerous. I keep mine in the freezer.

It was ten years ago I offered my doxy to that man. For legal liability reasons I can not provide prescription medicines to people with life-threatening illness, I am sorry.

Any veterinarian should be able to aquire this antibiotic for you. It's sold by Internet pharmacies as well, but Thailand is by far the cheapest place to buy it or get it sent from.



30.  Mini    Thursday, January 8, 2015

Hi Sarah,

I was able to take my dad in to the drs today and request the western blot test. They could not find the code specifically for panels #31 and #34. By any chance would you know how I can get them this information? They did bring out a book of codes and said that with writing "western blot test" it should be enough. I want I make sure everything is done correctly before I try to do it again with a provoked antibiotic process, in case this one comes back negative.

Also, if panels #31 and #34 come back negative, does that mean he is negative over all since these panels were more precise. Or should it be done again while provoked with antibiotics?

Another thing, I just went to the lab where his exams were sent and they said they only do an IGG and IGM to test for Lyme. Is that ok?



31.  Sarah Vaughter    Thursday, January 8, 2015

The only test I recommend is an antibiotics-provoked Igenex test. Nothing else. "Antibiotics-provoked" means you take doxycycline some days prior to taking the test.



32.  Lyme patient    Monday, January 12, 2015

Yes Sarah, I agree. ALS is a bacterial infection that is really Lyme in its final stages. I have first hand knowledge of this. In fact, you are so correct. Many of these so called diseases with unknown causes (muscular and neurological) such as MS, Fibryo, Chronic Fatigue, RA and so on are bacterial infections. This will be a well established fact in the future. Unfortunately, most doctors only know what they are told or read in a text book. Science is ever changing and if an MD cant keep up with the research, they need to find another job. They only know how to read a CMP and send you elsewhere and so the story goes. Everyone gets their 15 min of fame.

Physicians have no incentive to look for Lyme for several reasons. First of all, it is not considered a long term chronic disease by the CDC (even though they know it is). If a bullseye rash is seen, you can be treated for 60 -90 days which may or may not cure it. However, a bullseye rash comes from a tick but there are other vectors such as fleas, mosquitos, and some biting flies that transmit it. No bullseye rash from them. Most physicians do not have a clue how to treat it because the disease is so complicated and would require much more education. The elisa lab tests misses 60% of positive cases. Also, there are many other infections that come from these vectors others than Borellia.

Bottom line, dont let an MD who cannot tell you what causes a disease tell you what you have or dont have. Research it yourself. Lyme disease mimics hundreds of diseases and is an epdemic all over the world. You can order a kit from Igenex and your doctor can send in your blood for PCR analysis which is accurate. They can also order a culture test which is 97% accurate. Its your life and your body. Doctors are not God! They only know what they know. READ, RESEARCH AND DONT STOP!



33.  Lyme patient    Monday, January 12, 2015

You need to wake up darling, so you will still have a job when the truth comes out! You dont understand Lyme disease. It is a multi sytem disease that involves more understanding of all body systems than you are able to grasp. Need to go back to school for a while. Oh, keep on with your gov funded ALS studies and dont look for Lyme. Might not get your paycheck. Or have some guts... before you do anything, do your patient a favor. Send their blood to Igenex or grow a culture until it is a proven fact that no Lyme exists or better yet, call Richard Horowitz in NY if you really want to learn something. He has more sense in his fingernail than most docs ever thought of having.



34.  Stan    Monday, January 12, 2015

Sorry Sarah but your not entirely correct. My wife was tested for a huge spectrum of bacterial diseases including Lyme and 76 others. All tests came back negative. She died of ALS inspire of antibiotics. The UCLA neuromuscular disease research team has tested over 569 different antibiotics and anti viral products against ALS & MS. The tests came back negative. I wish your speculation had some basis. It would make progress so much easier



35.  Sarah Vaughter    Monday, January 12, 2015

My whole point is that those tests are worthless. They are severely flawed by design and hence yield a very large percentage of false negatives. See my book for details.

My other point is that those antibiotics trials you speak of (not 569 different antibiotics have been tested but only two or three) also were fundamentally flawed. See my book for details.

As to my points being "speculation": Tell this to all those people with an ALS diagnosis who recovered with antibiotics and, many years later, are still alive today. See my book for details.

(That book is a free download and does not contain ads.)



36.  sliv    Saturday, January 17, 2015

As a neurologist you might want to take a second look at what Lyme can do and not be so blockheaded. Lyme disease is very much a disease of the brain and there are many brain findings, including hearing loss, vertigo, double vision, tunnel vision, Alzheimer's like memory loss, and the list goes on and on. I saw neurologists on a number of occasions, all who missed diagnosing my Lyme disease. I had one who said that I was lucky not to have something he could diagnose, when my hands and feet were numb to med arm and mid leg, my short term memory was minutes long, I went from being an avid reader to not being able to read; My heart was affected, gut, bladder, and the list goes on and on. Not with something directly wrong with the system itself but with the deeper nerves of the brain that regulate those systems.

Maybe you meant to say that ALS is a disease of the motor neuron, not the brain, but this is not the first time I have read about ALS being Lyme disease and, as such, treatable. When you call someone an idiot and at the same time show your own ignorance, well then you prove what people with Lyme disease are still finding out. Many doctors, and all of the fourteen doctors I saw in my seven year search for diagnosis, are unable to diagnose Lyme disease because they know almost nothing about it. Shame on you and your ignorance and arrogance!



37.  sliv    Saturday, January 17, 2015

From the reading I have done, and from the decline and now improvement from antibiotics that I have had, I would highly recommend that you contact ILADS and ask for a referral to a Lyme savvy doctor. The fact that you started out with Lyme would lead me to believe that you could very well have it still. Since some LD looks like MS, from what I have read, and LD is treatable why not at least try treating the LD and see what happens. I've been medicated since 1997 with high dose antibiotics, with some breaks in between, and I can say that although I'm not better, I'm radically improved. And l have my life back. I have regained feeling in wooden feeling hands and feet to mid-arm and mid-leg, regained memory, come out of a mental fog, and have gotten off the couch!



38.  Steve Tuter    Monday, January 19, 2015

someone needs to stop the hemmoporage,that money has been raised to stop these illness'es not pay some biggassed bank account or organizations luncheon bills, I'm praying that Jew lady that's running the ANA will seek wisdom as sometimes only The Jewish people can seem to when deciding where these monies will be invested.



39.  Sissy    Monday, February 2, 2015

Do you know if the 11 patients that got better with antibiotic also had both upper and lower motor neuron involvment?



40.  Michele    Tuesday, February 3, 2015

Sarah, thank you for putting the truth out there!



41.  Jaeaja    Thursday, March 19, 2015

I cant begin to express my admiration for all you have accomplished to wake people up to this issue sara. As a long term chrinic lyme patient who is beginning to show als symptoms myself it is theilling to see this discussion. My diagnosis was missed for about a decade at which time my children became ill with the disease as i had passed it in utero to them. I then spent years attempting to cure them with various "knowledgable " doctors while they continued to go down hill while taking doxy and various single antibiotic courses. While somewhat effective true healing is found using very specific antibiotic groups used together which kill the lymes in all its forms combined with strong microbial herbal remedies prescribed by a lymes literate ohysician only an ilads doctor. International lymes and associated disorders certified doctor is qualified to correctly through igenex or quest specialty labs diagnose and treat lyme and the multitude of co infections it brings with it. My daughter 9 years old had been ill for six hears until she was seen by dr jones. Charles ray he took her from years of hiding in a dark bedroom running constant fevers weakness and neurological symptoms to pumping on her swingset in the swing nover 800 times singing using a combination of four antibiotics. Only a lymes literate physician can treat effectively. I thank and commend you for your work i plan to further the fight when i am strong enough with everything i have. Just suggesting that there are far more effective weapons than doxy. Go east this is where the warriors are God bless you. Laura mother of many with lymes



42.  Jarek    Friday, March 20, 2015

Hello Sarah,

My mom has been diagnosed with symptoms towards the ALS

By coincident she was bitten by thick 3 years ago and
learned about it with delay, just when she noticed bull’s eye rush on back of
her arm few months later. She went through 6 weeks of antibiotic treatment and
the rush disappeared. Everything was O’K until last September, when she started
to limp. Now she has lost control over both legs and the symptoms progress
further – her right hand is affected.

The ELISA test produced negative results both IgM and IgG. I’ve
heard that LTT test developed in Germany is reliable and even surpass WB antibiotic
provoked. Would you have any opinion about it?

Best regards,
Jarek Krol



43.  Papadoc    Tuesday, April 21, 2015

I developed EM (erythema migrans) on December the 8th 2013 . the first two ringed rashes I treated with antifungal prescription cream. then tried steroid cream. From Jan to june 2014 I went to 3 Drs.,2 being specialists in dermatology. All gave a diagnosis of Eczema and prescribed steroids and dermal creams. Not satisfied, I started researching my rash online of differential diagnostic pictures. ringworm, eczema and Lyme were close to top on the list of matches. (That only took 5 minues online!) I knew it wasn't ringworm or eczema because I had already used those meds. Since having a BS in Biology,chemistry, and a DDS. I wanted to be a compliant patient for the specialists, but not skew their diagnosing process. I did let them know I had been exposed to tick born diseases just weeks prior hunting and handling deer,hogs, and other wildlife. I offered the information regarding the prescriptions I tried( with no results) of diflucan and steroid creams. I also offered them to do any blood tests,biopsies, and skin scrapes they needed to diagnose this problem. None of them looked beyond their RX pad with half their diagnostic work done for them by me. They all still prescribed steroids. Drs are only as good as their professors if they never study more after med school. One years experience repeated 20 years is not 20 yrs experience, even if your a Neurologist. I began having joint pain in my hips and the brain fog followed a few months later in the winter of 2014. I came to the possible diagnosis that I may have Neuroborreliosis. I was in late stage of the disease. I found a great physician that performed the blood tests. WB w kda bands along with other tests. As soon as I began oral antibiotics, the rash disappeared in 5 days. not one dermatological search result recommends doxycycline as treatment for eczema (it wasn't eczema). However, since it was not properly diagnosed and treated early on, I now am fighting late stage of it but gaining on it. Neuroborreliosis causes vasculitis in the cranium, and Borrelia is an anaerobic bacteria(doesn't reproduce in oxygenated tissues). I began daily aerobic exercise (7dys a week) along with prescribed IV meds and LDI( low dose immunotherapy). They all definitely help the brain fog dissipate. The mitochondria in the affected areas suffer dysfunctionbecause it has a greater amount of waste products to deal with. Again the increased oxygenated blood flow from exercise assists in the trash being taken out of the cells so the mitochondria can function better, not to mention increased lymphatic function too. Pharmacuticals alone wont do it my friends. you have to do it all..... antibiotics,nutrition, exercise, immunotherapy. that may not reverse permanent damages done, so all the symptoms may never go completely away. Drs should never be so imperious that they think they know all. Knowledge never ceases lest you quit searching.



44.  JDubb    Sunday, June 14, 2015

Hi Sarah,
What is the protocol for the antibiotic provoked test?



45.  Sarah Vaughter    Sunday, June 14, 2015

I don't know the exact details. I'd take 400 to 600 mg of Doxycycline for two, three days and then wait 48 hours and then test. But this may be far from optimal. It's better to ask Dr. Marz directly.

I tested IgM-positive for Bb s.l. after three years of uninterrupted antibiotic treatment. IgM means active ongoing infection..



46.  KDS    Thursday, September 10, 2015

Please explain how ALS isn't a "disease" when there are hundreds of familial ALS patients with identified mutations?



47.  Sarah Vaughter    Thursday, September 10, 2015

I think it is sufficiently clear from this site and my book that this site is not about the very minor exception, familial ALS which has nothing to do with the great majority of ALS cases, and hence this disease should have been called something else.



48.  dawnatilla    Friday, October 23, 2015

- "I think my 13 yr old with dyslexia could have written it better" (WHAT CRAP)

- "People like that are just wicked"
- "She should be strung up by her toes"
- "The author had the audacity to offer the book as a free download here"
-"If chuzpah was currency, you'd be richer than Bill Gates"
- "I'm going to delete this thread"
******************************************************************
Sarah its obvious to me these comments are purposeful and written by shills of the powers that be. THESE COMMENTS ARE NOT THE COMMENTS OF INTELLIGENT PEOPLE WHO HAVE READ YOUR PUBLICATION.

I appreciate your intelligent research, and you have literally saved my mom's life.



49.  Robert    Saturday, November 7, 2015

I've been having burning and tingling in my feet legs and hands for over a year now. The intensity levels very. I am seeing noticeable muscle atrophy. Saw a couple neurologists and am seeing an integrative MD. She now thinks I don't have Lyme because of blood cultures that have tested negative after 10 & 16 weeks. She wants to do a month of iv antibiotics.

If reading your post correctly then I feel like I'm doomed if I've had my neurologist symptoms too long. Antibiotics could actually make me worse if I stop taking them? I don't think my doctor would prescribe them for more than 2-3 months tops from my past discussions with her. Not sure what to do? Lyme tests are negative and MRI was ok a year ago as was a spinal tap. Any thoughts would be appreciated!



50.  Sarah Vaughter    Saturday, November 7, 2015

To say that "antibiotics could make me worse if I stop taking them" is a very illogical statement. It's like saying: "Food could make me starve if I stop eating".

If I were you (but this is not medical advice) I would go on a lifelong dose of Doxycycline, 600 mg/day. 400 mg/day for a few days when the 600 mg/day will cause insomnia, then back to 600 mg/day. Assuming you are an adult of normal weight.

Lyme tests are so unreliable that they are of no value. Some exceptionally intelligent people I know personally (software developers, engineers etc.) refused to accept their ALS diagnosis and regardless of the outcome of any Lyme tests decided to self-treat with black market Doxycycline and they are still alive. YMMV.



51.  Adnan Sharara    Monday, January 11, 2016

Hello Sarah,

Thank you for sharing these valuable information.
My dear uncle has been diagnozed supposedly by ALS.
However, after reading your post, its kinda make sense to me but we are not in the U.S.A, so i called "IGENEX" to ask about the antibiotics-provoked test for Lyme, and they said they dont know what that is.
Please can you advice me of what to do ?



52.  Sarah Vaughter    Monday, January 11, 2016

You have misunderstood what "antibiotic-provoked" means. It's not a kind of test. It means taking the proper dose of the proper antibiotic for the proper time prior to taking the test. The abx. will cause dieoff, which will provoke an immune response, triggering antibody tests and immunofluorescence tests and DNA fragments, triggering PCR tests.



53.  Adnan Sharara    Monday, January 11, 2016

Thank Sarah! I appreciate your reply!
So what should i inquire from IGENEX when i speak to them ?
Because they said they will send us the kit to know how we should do the test.



54.  Sarah Vaughter    Monday, January 11, 2016

You need: (1) Access to Doxycycline. (2) A reasonably reliable Lyme test, preferably two or three of a different type.

Then you need to figure out exactly how Dr. Martz took abx. prior to his tests. I am not sure he made that public. Otherwise you should consult a LLMD. I think 5 days of 400 mg/day of Doxycycline would be an example, but I have no idea what is optimal.



55.  Adnan Sharara    Monday, January 11, 2016

Please Sarah what is "LLMD" ?
Yeah i tried searching how Dr. Martz took abx but couldnt find details... And yes we have access to Doxycycline...



56.  Sarah Vaughter    Monday, January 11, 2016

http://lmgtfy.com/?q=llmd



57.  Adnan Sharara    Monday, January 11, 2016

Thanks Sarah!
I also contacted now "Creek trail medical inc" who are a continuing the project started by Dr. Martz. So hopefully they will be able to advice with the protocol Dr. Martz used.



58.  Sarah Vaughter    Monday, January 11, 2016

Sorry for my late answer, I did not notice this question. My opinion is that an ALS diagnosis after a tick bite with bulls eye rash is 100% certainly neuroborreliosis and not "ALS". Tests at that stage are meaningless and extremely unreliable anyway. 6 weeks of antibiotics (whatever type/dose) is often insufficient, even with perfect treatment, which is nearly never administered.

Not starting immediate, correct antibiotic treatment is a criminal act of deliberate medical malpractice and I would threaten the hospital and doctors with a lawsuit if an independent autopsy shows live spirochetes in the brain. Regrettably, nearly no family member with an ALS diagnosis + Lyme history is willing to do such a thing.

The hospital will do everything in their power to prevent such a post-mortem investigation.



59.  Exa    Monday, April 25, 2016

Hi Sarah, are symptoms matching ALS using treated by Lyme disease medications? What if the Lyme panel comes back negative?



60.  Sarah Vaughter    Monday, April 25, 2016

In my opinion, ALS does not exist, is not a disease but a nonsensical name given to one of the many possible symptoms of a brain infection such as Lyme disease. I believe that Lyme neuroborreliosis is incurable and can only be managed.



61.  Sarah Vaughter    Monday, April 25, 2016

You can perhaps find this information in the study.



62.  Rich    Saturday, April 30, 2016

Mark you are a retard I have Lyme it is found in the brain,mine is late stage I've been slowly recovering from antibiotics and other treatment through an llmd when they studied the donated als patients brains in over 70% they found Lyme saphocrites in the brain, there is much more to Lyme than most people know and there is many different variations of saphocrites. My body temp dropped to 95.5 i began seizing loss the ability to move my left leg and to this day have constant muscle twitching and problems with muscles. I lost most cognitive abilities and after 2 and a half years of treatment I am able to think and function again so to say that Lyme cannot enter the brain is completely retarded go back to school and get another degree, you are dangerous my friend because it's people like you who label us with death sentences. It makes me sick



63.  Liz    Friday, August 5, 2016

Holy Cow Papadoc! Same thing I went through back in 2010 with the ' ring worm' diagnosis. Two weeks after that diagnosis, I ended up with Shingles and that ' ring worm' area on my left shoulder became severely inflamed as well as the Shingles on my right side. Herpes and Lyme travel together and most Lyme patients if not all have Herpes as well. Lyme suppresses the immune system to such a degree that the Herpes will emerge. I later discovered that the ring had a papule in the center which could be indicative of Bartonella or a Fixed Drug Eruption. Look at web images if you're not familiar. I assumed it was the FDE because I had an allergic reaction to Tequin in 2003 which caused vascular damage among other neurological damage. Or was it Lyme that was activated when I took the Tequin? It's all so complex and I'm not an expert by any means. Anyway, like you , I have science and medical education and a need to find the cause of disease and just not treat the symptoms. I have Lyme, Bartonelliosis and Babesiosis that tests finally confirmed in conjunction with clinical diagnostics. I've been severely symptomatic since May of this year and since I'm unable to work or do much of anything, I spend a lot of my time researching. Thanks for sharing your experience. I will copy it and keep it with my notes if you won't mind. How are you doing now? If you would like to correspond about symptoms, protocols, etc... let me know.



64.  Liz    Friday, August 5, 2016

I completely agree with you. Given how doctors are the third leading cause of death in America, I find it completely moronic that anyone working in Medicine would believe that credentials mean or prove anything. I went to medical school and I can tell you that there were plenty of doctors who could pass tests who were lazy, arrogant and felt entitled to do little to nothing more than push legal drugs.
I would hope the ALS nurse ( G-d help her patients) would educate herself about political corrupt medicine, political and corrupt medical societies and organizations like the AMA, FDA, EPA, CDC, etc.. There's no acceptable reason for a nurse or doctor today to remain ignorant about what influences American medical practice. Obviously those that are ignorant are just lazy and simply don't care about their patients enough to question the current conventional thinking of a few at the top.
I recently visited my Lyme doctor and her nurse didn't even know what Fluoroquinolones were!!!!!!! When I finally explained to her what they were and told her a list of medications by name that are in that class of antibiotics and also explained to her how risky they are and perhaps dangerous, she became defensive and began blathering about how great they are and how she gives them to patients for all sorts of infections. I suggested that she read the latest warnings from the FDA.



65.  Liz    Sunday, August 7, 2016

Sarah, I can confirm that the Herxheimer reaction can be lethal. I am being treated for Lyme, Bartonella and Babesiosis and to be frank, I fear taking my antibiotics and supplements because the Herx reaction is so bad that I don't think I can bear it some days. There have been days that I really believed I was going to die and other days when I really wanted to die and I'm not being dramatic. It's critical to detox while taking antibiotics and herbal treatments. I use fractionated pectin and herbs to help detox. I thought that the symptoms of the diseases were bad but the Herx is often worse. It's terrifying. I have neuro-Lyme.



66.  Liz    Sunday, August 7, 2016

Sarah is correct that the tests are most always inaccurate and in my state of VA, they even put a disclaimer on the bottom of the result page that warns patients about this fact. If you have insurance and are tested by a doctor who accepts insurance, you will most likely NOT get an accurate test. I had to pay out of pocket to get the IgeneX test through a Lyme Literate doctor. Always keep in mind that any stats are based strictly on reporting and the reporting of Lyme requires extremely unreasonable requirements ( like being positive on 4 bands). Dr. Neil Spector and I both tested positive for Lyme (eventually) on one band of the Western Blot test specific for Lyme but the CDC won't add that result to their surveillance data which really angers me because I'm so very ill, very disabled and I'm not even considered. I'm sure there are thousands if not millions of more people like me who suffer every day without any acknowledgment. Many patients like my father died with a diagnosis of ALS when actually he had Lyme. His death isn't reported accurately. Another thing to consider is that NOT ALL antibiotics work the same for all patients. There are many genetic variables that will determine effectiveness and a good Lyme Literate doctor knows this and will get a DNA test of their patients. I have a negative blood type which I believe also affects how antibiotics work though I can't prove that at this time. My father was also A- negative.
Dr. Neil Spector, who had to advocate for his own life, discovered that many patients who had died from ALS or MS who were organ donors were unable to donate because spirochetes were found in their organs ( heart, kidney, etc..) and had damaged them.

https://www.lymedisease.org...

https://www.lymedisease.org...



67.  Lori Dennis    Monday, February 20, 2017

Sarah - would you please be willing to speak with a young man in California who messaged me tonight. He is suffering from Lyme with severe ALS symptoms. He's tried everything out there and seems to be getting worse with time. Any input or guidance would be so much appreciated. Thank you. Btw - I'm the author of LYME MADNESS. If you would provide a mailing address, I'd love to send you a copy of my book.



68.  Sarah Vaughter    Monday, February 20, 2017

Hi Lori. The only suggestion I have is one that I made public several times: Highly-dosed Doxycycline. That should make him initially much worse (with risk of death in mere days or even hours if he's late-stage ALS, as documented with antibiotic trials in ALS patients), then better. If that fails, I have no other ideas... I think Doxy moderates the immune response, possibly the mTORc1 pathway. A lot of the chronic Lyme sx are due to auto-immune inflammation, perhaps (partially) due to OSP cloaking. But I strongly suspect (based on evidence, both from peer-reviewed literature as well as my own medical tests) that there is an active (IgM) component. I am not a doctor and can not give specific advice. As I said, Doxycycline is his best bet. 600 mg/day or more, also depending on his weight. Again, please note that this could result in near-immediate death in case of ALS due to the Jarish-Herxheimer reaction. In my opinion, the autoimmune inflammation in case of an ALS diagnosis is so severe that abx. may only exacerbate the situation in many cases. It's a hard decision to make and I can not help with that.



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