Antibiotics often work against ALS - in spite of medical trials denying it

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."

"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."

"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?"!-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."

"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."

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1.  Roeyourboat    Tuesday, January 3, 2012

sarah, thank you for being brave enough to start this website. keep at it. I am NotALS! and am still doing ok!

2.  Wilfred    Friday, September 28, 2012

On page 147: Doxycycline + metronidazole for one week. Dead bacterial fragments can be found in the urine? Is this correct? I´d be greatful for a response.


3.  Sarah Vaughter    Friday, September 28, 2012

Yes, this is called "antibiotic provoked testing", and fragments are also found in other tissues such as the blood.

The problem with Lyme PCR testing is that there just are no Borrelia bacteria floating in the bloodstream or Cerebrospinal fluid, due to the fact that Bb is microearophilic and can't survive in those tissues. Bb mainly is an intracellular organism. Brorson showed that Bb encysts in seconds in CSF.

Hence, a PCR test on blood or spinal fluid usually falls out negative, even in case of active infection.

The solution is to first take an antibiotic that penetrates the blood-brain barrier, then PCR-test the urine or blood. It is crucial that this method of testing is used, or false negatives are the inevitable result.

Also, most Lyme tests are deliberately "rigged" to be very inaccurate, due to the fact that the manufacturers do not want to pay patent licensing fees. So you can't just use any test, you need to use tests that actually test for relevant things. Igenex is the recommended lab at the moment.

Please note that I am not a medical professional and that I likely make mistakes.

4.  Wilfred    Saturday, September 29, 2012

Thank you for your fast reply! I really appreciate that! My question: In your experience (I don´t consider this as medical advice) has the combination of doxycycline + metronidazole ever endangered a patient with late stage ALS? The lady I´m trying to inform and help has death already waiting around the corner. I.e., her left arm paralyzed, right arm getting weaker, feet paralyzed, legs getting weaker, breathing and swallowing problems, etc. I talked to a microbiologist here in Germany. He refuses to prescribe an antibiotic (for testing). "If she has been diagnosed ALS, then she probably has ALS." I mentioned ceftriaxone. Since I have read a lot of your pdf-book, his reply alarmed me: "Ceftriaxone has been tried on ALS-patients 15 years ago....with 2g (NOT 4g)." At least he is willing to analyze her urine if I can find another doctor who will prescribe her an antibiotic to kill off some of the bacteria.
We probably won´t find a doctor who is knowledgable, but maybe a doctor who is kind enough to grant a lady a last wish. Blood testing and a lumbar puncture have been done. Negative. No familial ALS.
What is the minimum mg-dosage for a test with doxycyline and metronidazole to be effective?
Thank you for your courage!

5.  Sarah Vaughter    Saturday, September 29, 2012

I am very sorry Wilfred, but someone with progressed sporadic ALS may worsen or die within days when antibiotic treatment is initiated, if their ALS is caused by Lyme disease. This would be as a result of the Jarisch-Herxheimer reaction. I am not saying that this *will* happen, but it *might* happen.

It is therefore of the utmost importance that proper Lyme testing (and immediate and correct antibiotic treatment, if necessary) be done in and directly after the diagnostic stage and not a week later.

Lyme neuroborreliosis is usually incurable. All that can be done is, over the years, slowly get rid of the worst symptoms. Quality of life can return. However, lifelong maintenance treatment is the norm, not the exception, if the patient is to keep improving and not stagnate or deteriorate again. This is "controversial", but not amongst LLMD's.

ALS as a manifestation of Lyme disease would need the earliest and most effective treatment to be even partially reversible, and any kind of antibiotic treatment, even one single small dose with an antibiotic that penetrates the blood-brain barier, may prove fatal in advanced cases, I am very sorry but this is the reality we know from medical trials.

The reason is that the inflammatory immune reaction to the bacterial fragments set free by the lysing of the bacteria destroys so much excess Myelin and grey matter that the result can be catastrophic. I am very sorry - I am not promising any cures for progressed ALS patients. What's needed is proper (antibiotic-provoked PCR) Lyme testing in an *early* stage and proper antibiotic treatment (very highly-dosed antibiotics that penetrate the blood-brain barrier, such as Minocycline, Doxycycline, Cefotaxime or Ceftriaxone). That is highly controversial and very expensive, since treatment has to be open-ended - usually many years.

As to the details as to what dosages are sufficient etc. - I really can't comment on that, except that you have to reach a bactericidal dose in the brain and that mainly depends on the drug and the weight of the patient.

6.  Wilfred    Saturday, September 29, 2012

On page 149 there was a case with Dr. Atkinson-Barr. The lady that I know is already being artificially ventilated... This a decision for her and her doctor. One final question: If her ALS is not caused by Lyme disease, then her condition would probably not deteriorate nor improve? Logic: no bacteria, no job for the antibiotic?

7.  Sarah Vaughter    Saturday, September 29, 2012

It is indeed my opinion that antibiotics would have no effect in a person with ALS if the ALS would not been caused by neuroborreliosis.

However, some may disagree. Antibiotics that pass the parenchyma do have mild neurological side effects and some of those could conceivably be exacerbated in ALS patients for example.

I can not give medical advice - I am not qualified and if anyone would die prematurely as a result of my recommendations, this site would be shut down in a heartbeat. You would have to get the patient's permission for any experiments with antibiotics.

8.  Sarah Vaughter    Sunday, September 30, 2012

That's great! How are you doing at the moment? Please realize that you may need antibiotic maintenance for the rest of your life. Neuroborreliosis is incurable, the only thinh that can usually be done is slow ibut steady mprovement, measurable only by the month.

Research is direly needed into novel antibiotics that can handle the complex defenses of perhaps the most evolved bacterium. Encysting, blebbing, OSP cloaking, intracellular hiding, extremely slow reproductive rate and efflux pumping are but a some of the ways Borrelia evades both the immune system and antibiotics.

9.  NHSteve    Thursday, April 17, 2014

Sarah, my wife was diagnosed with ALS in Dec. Symptoms include slurred speech, muscle fasciculations, minor weakness in R hand, phlegm buildup in throat. She has had two blood tests for Lyme both negative. We live in NH, many ticks on the dogs, etc but don't recall her having a bite. Have seen specialist (Dr. Brown, UMass) who confirmed ALS and said no to Lyme. Any recommendations? Seeing her local neuro on Sat. Thanks

10.  Sarah Vaughter    Thursday, April 17, 2014

Follow the recommendations in my book.

(Get an antibiotics-provoked Igenex PCR test). The "Lyme tests" administered by hospitals and neurologists are "designed" to be falsely negative. Read my book as to exactly why and how to get properly tested.

ELISA or non-antibiotic-provoked Western Blot (they never are abx-provoked!) are completely useless.

The Bb spirochete lives in dog saliva and can be transmitted to the skin and from the skin end up on a mucous membrane (eye, mouth etc.) and that's it - you're infected. Also, many people who test positive for Lyme do not recall a bite or a rash. Lyme can be transmitted in many more ways than via ticks - there is a lot of evidence for that, as explained in my book.

As with MS (also a neurospirochetosis), it is likely that ALS is a general neurospirochetosis and not 100% Lyme. So only a only a percentage of ALS would be Bb, the rest could e.g. be oral Treponema as demonstrated in Alzheimer's by Dr. Miklossy, who found more oral Treponema than Borrelia burgdorferi s.l. in the brains of deceased Alzheimer patients.

So the basic premisse could still stand (spirochetal CNS infection) even when testing neg. for Lyme.

11.  NHSteve    Thursday, April 17, 2014

I am in process of reading the book. Forgot to mention there have been two "positive" EMGs done showing a gap in the muscle irritation response. Can this be a result of Lyme?

12.  NHSteve    Thursday, April 17, 2014

Also, she is on Rilozole. Should she come off that to take antibiotics?

13.  Sarah Vaughter    Thursday, April 17, 2014

I'm not a doctor but things are very simple: Lyme is a progressive destruction of brain tissue. ALS is progressive destruction of brain tissue. I think whatever is attributed to "ALS" could be Lyme. Please understand that there is no such thing as an ALS expert because those neurologists have no idea what causes ALS. Despite their claims to the contrary, ALS and Lyme symptoms are identical and indistinguishable, as can be read in my book, where many people previously diagnosed with ALS achieved a full cure by taking antibiotics.

14.  Sarah Vaughter    Thursday, April 17, 2014

My opinion is that a drug that has (virtually) no efficacy against ALS is useless, but I also see no reason why she would not be able to keep taking something that has no effect.

There are extremely few interactions between the majority of antibiotics and other chemicals, but you should always consult a doctor and read the guidelines that come with the drugs. I am not a medical doctor.

15.  NHSteve    Thursday, April 17, 2014

Thank you. I'll keep you posted on our visit and hopefully a dose of antibiotics!

16.  Sue Pa    Saturday, April 19, 2014

if you have not had the LTT (ELISPOT) for Borrela, do not discount Lyme. it often will not show up with any other testing. this test is available from Igenex, who sends it to Infectolabs in Germany.

17.  NHSteve    Thursday, May 8, 2014

OK, saw the neurologist and had a spinal done for PCR. Came back negative. He is open to antibiotics. Saw a LL nurse practitioner as well and had W blot done. Negative. Trying to get antibiotics on board before the Igenex test and have asked for Doxy and imidazole. They weren't too familiar with the imidazole. Haven't gotten the go ahead on the antibiotics yet so will have to call again tomorrow. Long slow process and wife is getting tired of the constant not knowing what she has and if it can be treated...

18.  NHSteve    Thursday, May 8, 2014

Saw the neurologist for spinal (PCR). Came back negative. Took her off Riluzole. Saw LL nurse practitioner for W Blot, came back negative. She is getting tired of not knowing. No weakness, still has slurred speech and fasciculations in arms/legs. Neuro said he believes bulbar ALS but willing to try antibiotics. Guess we should be careful with the dosage. Also, going to have the Igenex test done by the NP. I think we should start abx first for a week before the Igenex, correct?

19.  Bruce Eckerd    Thursday, May 8, 2014

Hi, someone important to me was recently diagnosed with ALS after several months of doctors not having any answers for him. He links it to a severe case of spinal meningitis many years ago. Do you think there is a link here? If so, could Lyme still be involved, or could the antibiotic treatment still be affective? Obviously, as you have said elsewhere, since ALS is a death sentence, it really can't hurt to try the antibiotics treatment. But I have to find a way to convince him and not provide him with false hope. Thank you for your time.

20.  Sarah Vaughter    Thursday, May 8, 2014

I am not a doctor, but a week seems more or less appropriate to me. It would be better to read Dr. Marz' story on how he finally tested positive on an antibiotic-provoked Igenex PCR and how that turned into a full cure for his ALS diagnosis, eventually.

If I were you, I would stick to the exact procedure he followed. Same dosage (adjusted for weight), same antibiotic.

I am not a medical doctor and this is just a personal opinion, not medical advice.

21.  Sarah Vaughter    Thursday, May 8, 2014

Spinal implies a breach of the CNS. Meningitis = an infection (bacterial or viral, usually) of the tissue surrounding the brain, including the blood vessels leading into the brain. So it's an infection of part of his CNS.

Because the CNS has only a very limited immune system (it is "immune-privileged"), it is very easy for an infection to slowly spread throughout the entire CNS, when it has already breached the blood-brain barrier.

Some bacteria divide quickly and such a spread is fast, some bacteria such as spirochetes grow and divide extremely slowly and such a spread takes years, esp. when the bacteria do not "eat" the most important part of the CNS but limit themselves to the supporting tissue, Myelin etc. ("Keeping the host alive as long as possible").

In my opinion, someone currently diagnosed with ALS who had a CNS
infection prior (no matter how long ago, spirochetal CNS infections
often take YEARS to even become noticeable, let alone life-threatening) should assume that the ALS symptoms (remember, ALS is not a disease, it is a symptom) are caused by that prior diagnosed CNS infection.

In my opinion, it is more than 99% likely that the cause of his ALS diagnosis is that same spinal meningitis that has moved to his brain and spread there.

I am not a medical doctor and I never give medical advice. This is just my opinion based on knowledge (Judith Miklossy's work and the work of many others), logic and experience. With "experience" in this case I mean I know of one case where a man was diagnosed with a rapidly-progressing "ALS", he was treated for a spinal infection with antibiotics years prior, he died of his "ALS" and an autopsy showed it was not ALS after all. Keep in mind that an post-mortem done in the same hospital as where the patient was misdiagnosed will be suspect.

There is often little hope to stop a severe CNS infection with antibiotics. If a too low a dose is given, for example, the patient could easily die due to the bacteria trying to move away from the high tissue concentration. Spirochetes are extremely motile and able to "drill" through neurons with ease. Also, there exists no reliable way of eradicating a CNS infection (of most pathogens) so that would mean lifelong treatment.

Addendum: In case of the man diagnosed with ALS after having been treated with antibiotics for a spinal infection years prior, I made the discovery, from his file, that he had been given antibiotics that do not penetrate bone. This lead to the infection being eradicated inside the spine (the CNS part) but it entrenched in the bone, and later made its way again into the spine and from there to the brain.

22.  Bruce Eckerd    Friday, May 9, 2014

Thanks for your reply, it confirms my suspicions as well. So, in your opinion can he be cured? If so, what does he need to do, take antibiotics? I've been reading over your site, but it is a lot to digest, and time is critical. I understand you are not a doctor, I just need to convince him to seek out a knowledgeable doctor who can treat him and not give him a death sentence.

23.  Sarah Vaughter    Friday, May 9, 2014

The situation is extremely precarious, because antibiotics is the only thing, in my opinion, that may be able to save him, but then again, it is very possible or even probable that they could accellerate his demise if not administered perfectly (correct dose, type and duration). And then it still would be possible that he would die (very much) sooner instead of later, even when he is treated "optimally". This due to the potentially fatal effects of the "herx" and/or the physical damage agitated spirochetes may inflict.

I'm sorry, but that is my opinion. If I were the person with ALS, I would immediately start taking 500 mg/day of Doxycycline (because the longer you wait, the more hopeless the situation becomes) but write my last will and testament first, because instead of a severe Jarish-Herxheimer followed by a very slow but steady improvement, he could also die within hours from respiratory failure, to give but an example. A severe Herx can and will do that to ALS patients, when given antibiotics, sometimes. This is from published medical literature, quoted in my book. However, when the ALS has not progressed too far yet, such outcomes are very rare.

There are no sure-fire cures for ALS, not even when it turns out that that particular case of ALS is caused by a bacterial infection. Neurosyphilis, a bacterial infection of the brain (with the spirochete Treponema pallidum), often requires years of treatment with antibiotics. Sometimes life-long treatment. ALS would need a similar approach.

Doxycycline moderates brain inflammation, so even when a case of ALS is "auto-immune" it could help. There have been done experiments with Minocycline on ALS patients with very meagre results but I think that is because they did not dose high enough and long enough, and they stopped as soon as there were "bad reactions" (worsening of symptoms in such cases is in my opinion a sign that the ALS is indeed caused by a bacterial infection and would indicate the need for higher dosage instead of cessation of treatment.)

Doxycycline is relatively cheap and relatively easily available and apart from severe photosensitivity, less side effects statistically occur than with Minocycline.

I am not a medical doctor. All the above are unqualified personal opinions. Acting upon any of my opinions could result in death.

24.  Bruce Eckerd    Friday, May 9, 2014

Thanks so much for your time. I will present him with this information and hopefully he can find a doctor who is educated enough to be able to help him. His present doctor pretty much told him he was going to die and sent him on his way.

25.  NHSteve    Tuesday, May 27, 2014

She is now on Doxy for about week and a half. They plan on Igenex test in June. We'll see how that comes back. She has not seen any improvement in speech or fasciculations so far on the Doxy.

26.  Sarah Vaughter    Tuesday, May 27, 2014

What is the dose?

27.  NHSteve    Wednesday, May 28, 2014

I believe it is 100mg x2 times/day for 28 days. Then get blood draw for Igenex lab.

28.  Sarah Vaughter    Wednesday, May 28, 2014

I was afraid of that.

There are a few things wrong with this:

- 200 mg/day is a dose against acne. Against Lyme/ALS/any bacterial neurological infection whatsoever, this will do absolutely nothing. I rapidly deteriorate when I take less than 500 mg/day. I need 600 mg/day to very slowly improve or remain stable. I have been on 600 mg/day for the past 14 years and very slowly improved on that. It took years before I regained full use of my left arm and hand and there still is substantial weakness there. I had to take 800 mg/day for a year to see sustained, solid improvement there. Unless very high doses are administered, nothing will happen. IIRC, Dr. Marz was on 800 mg/day of IV Ceftriaxone and nothing happened until they doubled the dose. 200 mg/day or even 400 mg/day is a crime. No less than 600 mg/day for ALS in my opinion. Otherwise no effect. The Minocycline trials showed this as well.

Microbiologists even say that the minimum dose of Doxy for CNS infections hould be 1 gram. However, that will cause (reversible) organ damage in the very long term.

- The time between the antibiotic-provoked test and the start of administering antibiotics is too long, in my opinion. Especially because the dose is much too low. There might have been a very minor response by the bacteria/immune system, but after a month the traces of that are likely not detectable any more.

- Since 200 mg/day will not kill any bacteria (what is needed is at least a borderline bactericidal concentration of Doxycycline in the CNS, which would be at least 600 mg/day), this implies that her Lyme test will NOT be antibiotic-provoked and could for that reason easily fail (be a false negative).

As I explained many times on this site and in my book, it is of the utmost importance that proper procedures are followed if you want to stand half a chance. Do not let yourself be intimidated by incompetent, disinterested doctors.

I am not a MD.

29.  NHSteve    Monday, June 9, 2014

Thank you. She started on 600/day yesterday and blood draw for Igenex is Friday afternoon. Keep you posted on outcome. Thanks

30.  NHSteve    Tuesday, June 17, 2014

Had the blood draw on 6/13, sent out to Igenex yesterday, 6/16. Should have results next week. Bit of a set back yesterday when doc's office called to say she is not a candidate for stem cell as she has been diagnosed with bulbar. Still no weakness in limbs, etc. hope we get a positive test!

31.  NHSteve    Wednesday, July 9, 2014

Sarah, just got results back from Igenex...POSITIVE for Lyme and co-infection, Ehrlichia! Doc putting her on 500mg/day Levaquin for now until she see's a lyme literate specialist.
Thank you so much for making me get her on the 600/day Doxy before the bloodwork. I am sure that had something to do with it!

32.  Sarah Vaughter    Thursday, July 10, 2014

Well, nice to know her life may be saved.

However, things took a wrong turn already. That doctor is guilty of malpractice, because Levaquin will not help her Lyme (= ALS symptoms) at all. 600 mg/doxy a day is what I would prescribe, if I were a MD.

In cases such as hers, a single day delay or interruption can mean 1 year extra treatment needed to recover, or the impossibility to ever recover (fully).

The focus should be on the Lyme. Ehrlichia is treated with Doxy as well.

And for those who claim Igenex tests are "always positive": I debunk that thoroughly with references in my free eBook. Everybody and their dog are complaining how they expect themselves to be positive but their Igenex tests are negative.

33.  NHSteve    Saturday, July 12, 2014

The 600mg/day Doxy upset her stomach. Any suggestions for that? Hasn't started on Levaquin yet.

34.  Sarah Vaughter    Saturday, July 12, 2014

Doxy must always be taken on a substantial amount of food, or a stomach upset will ensue. Also, the capsules should be flushed with plenty of liquid because the substance is caustic and can burn the esophagus when it gets stuck there.

Another big problem is the extreme photosensitivity while on it (coupled with the long tissue half-time).

I used to have some stomach upsets even with food. I take 600 mg/day (on food) without the slightest notion of stomach discomfort nowadays. I've been on that dose for the past 14 years.

Please note that I am not a MD and that this is personal opinion as a layperson and fellow Lyme patient, not medical advice.

35.  NHSteve    Saturday, July 12, 2014

Thank you. And thank you for the work you are doing, the book you wrote. I am giving the site and urging anyone I talk to about it to look to Lyme, especially with the epidemic we have here in NH.

Have a friend with MS who has had it for years. So far reluctant to go down the road, been tested before, etc. Trying to urge him to get the antibiotic induced Igenex test. He grew up in lake area in NH, tick city!

Thank you again for saving our lives, literally. I will keep you posted with updates.

36.  Sarah Vaughter    Saturday, July 12, 2014

Thanks. The life will only be saved when proper treatment is maintained indefinitely though..

I just discovered that Lou Gehrig was an avid gardener in his summer house in Lyme, Connecticut of all places:

Here's my story on MS:

37.  NHSteve    Tuesday, July 15, 2014

My wife's doctor (nurse practitioner) wants to do 200 Doxy/day. I have a call in for her to up it to 600, but I doubt she is going to do it. Could not get appt with Lyme lit doc until Sep. do you know of any docs in NH that will go with the 600 since she has probably had the Lyme for 1.5 years now based on her start of symptoms. Diagnosis of bulbar ALS was in Dec '13. Thank you

38.  Sarah Vaughter    Tuesday, July 15, 2014

There are, relatively speaking, virtually no MD's in the western world prepared or even permitted to properly treat chronic neurological infections such as Lyme disease.

200 mg/day is a death sentence. It's a criminal act of deliberate malpractice. Such a dose is prescribed to "get rid of a particularly persistent hypochondriac" There is even a medical study showing that below-Minimum-Inhibitory doses speed up the demise of ALS patients. (I talk about that in my book). This is logical, as the motile spirochetes will migrate through previously undamaged neuronal tissue in order to find niches with lower concentrations. That's what spirochetes are known to do.

Some people are able to obtain doxy from Russian internet pharmacies, local veterinarians and Chinese or Indian manufacturers via Alibaba. A kg of doxycycline costs next to nothing and can be declared as pigment and manually filled off in capsules.

I would rather spend my last cent on sourcing sufficient (600 mg/day at a normal weight) Doxycycline from even a questionable source than take 200 mg/day with a dual ALS/Lyme diagnosis, because I rather take my chances, however remote, of a slow recovery than absolute certain death in just a few years.

Make sure the doxy does not spend too much time at room temperature. Keep it in the freezer for multi-year storage and in the fridge for multi-month storage.

Protect it against condensation, in the fridge. I suspect, based on 14 years of taking those substances myself in doses from 400 to 800 mg/day daily, that Doxycycline or Minocycline that has spent years at room temp. or a short time in a hot car etc. can undergo chemical changes that could cause elevated intercranial pressure, which could be lethal, according to Wikipedia (it certainly feels that way).

I am not a MD.

39.  NHSteve    Wednesday, July 16, 2014

She acquiesced and did 400/day...for 30 days. Have some left over so will get her to 500/day for at least two weeks while seeking other avenues to get more. Thank you.

40.  NHSteve    Friday, July 18, 2014

Any suggestions on food to eat with the Doxy? We were told not to have any calcium or iron. Thanks

41.  Sarah Vaughter    Friday, July 18, 2014

Doxycycline chelates heavy metal ions by binding to it:

..but at the high dosages taken, there should be a negligible effect on the tissue levels, even when taken with a significant amount of heavy metal ions in the food.

Calcium, Iron and zinc have specific gravities > 5 gm/cm^3 so according to the definition I used, they are heavy metals.

In my opinion, you can safely ignore the advice and eat whatever you like with 600 mg doxy/day. If you'd take 200 mg with a glass of milk, it would be like taking maybe 180 mg or so. At those dosages, you don't have to be paranoid about exactly how many heavy metal ions are in the food.

When in doubt, just eat a ham sandwich :-)

42.  NHSteve    Friday, July 18, 2014

Thank you, once more! She is doing much better taking with some food. Hope we see some improvement in a few months.

43.  Sarah Vaughter    Saturday, July 19, 2014

When I was prescribed Minocycline, I had to throw up many times over the weeks that followed. I am not sure whether that was due to neurological effects (Jarish-Herxheimer) or simply my stomach getting used to the substance.

Over the months and years, less and less adverse effects happen when I take doxy. Nowadays, I notice nearly nothing when taking a large dose (400 mg in one go). It's still doing it's job though. Either I somehow adapted to it, or there are less bacteria in my CNS of which their response to it causes nausea.

44.  NHSteve    Tuesday, August 5, 2014

Saw a Lyme literate doc the other day. He is getting a host of blood work done (about 28 different things). He also wanted to go to 400 doxy but I asked to keep her at 600 which he agreed to. Raised a bit of a red flag for me...

45.  NKIT    Thursday, August 28, 2014

Hello Sarah, thank's a lot for the free Ebook. I'm from Italy and want to thank you, first of all.
My father 60yrs old: from january 2014 speech difficulty, nasal voice, fasciculations, difficulty in swallowing. Neurologist, after visit, MRI, EMG, said: Bulbar ALS, even if not sure 100% (because my father can still walk, move, eat, speak). I told neurologist about possible infections (every ALS symptom started when he had lot of cough, a little fever just for a few days, but had cough from january 2014 to april 2014) but nothing. So I took the decision to contact Infectolab Germany and they made some tests with blood (no antibiotic provoked): Borrellia negative, CD57: borderline, Ehrlichia high titre IGG but no IGM, Mycoplasma Pneumoniae positive IGG, negative IGM, positive IGA (so the infection is still going on). What do you think? Do you see at least one chanche it is not bulbar Als but an infection?

Meanwhile I find some doctors that can really help my father, what should I do? Oral Doxycicline 500 mg (250 morning, 250 evening)? Anything else? Flagyl? Ceftriaxone? My problem is to understand this: just 500mg oral doxycicline? Or add Flagyl? IV or oral? How much? Please help!

Thanks a lot

46.  Sarah Vaughter    Thursday, August 28, 2014

In my opinion, ALS is always a set of signs & symptoms of a CNS infection.

Flagyl is a very dangerous substance to add to antibiotics because it can easily lead to very severe, chronic fungal infections in that case, when used long-term.

There is no solid evidence that Metronidazole or Tinidazole help against Lyme disease in vivo. I used it for years - also in combination with Hydroxychloroquine.

There are only two orals that worked for me: Initially (the first weeks) 6 g/day Amoxicillin, until the blood-brain-barrier closed up again when the inflammation was addressed by the Amoxi. Combined and followed up with Minocycline or Doxycycline.

400 mg/day is the absolute minimum to remain stable (with an adult of normal weight), so higher doses are required to very slowly reverse the neurological damage. Progress will be measurable month-by-month only, and the patient's situation may dramatically worsen as soon as treatment with those Tetracyclines is started. Some of those symptoms will remain for years and the patient may die prematurely, when his status is already poor to begin with.

Ceftriaxone is a "hoax": I quoted the Chinese research that found that it does not reach the brain parenchyma, except in case of Encephalitis. This also explains why trials with Rocephin against ALS remained without success. It is extremely regrettable that western neurologists still assume Ceftriaxone can penetrate the bbb. It only does when the bbb is compromised by an inflammation, hence their misunderstanding.

Sadly, medical doctors are neither scientists nor engineers. They are comparable to lawyers: They learn facts by heart but have no real understanding of them, and ususally do not do their own research but follow "authority". Medical "laws" are set in stone worldwide and are sometimes wrong, arbitrary and based on wrong assumptions.

Please note that I am not a doctor and that it is essential to educate yourself when you want to self-treat. And I don't mean on patient forums but cutting-edge worldwide medical literature!

47.  NKIT    Thursday, August 28, 2014

Sarah, thanks! Thanks a lot!!!

So, if I understand (sorry I am italian):
- 500mg doxycline could be good to try: 250 morning, 250 evening? Right?
- 500mg from the first day? or gradually increase, from 200 to 500 day by day?
- nothing to add: no flagyl no other substances. Just try doxycicline. Ok.

Just a few questions:
1- my father for sure has Ehrlichia + Mycoplasma. Borrelia negative (Antibodies all negative: positive just one band in IGG, another IGG one borderline; LTT Elispot negative,), Cd57 is borderline. If he starts doxycicline 500mg, should we repeat the tests for Borrellia? after 3 weeks? And: just blood, or also urine?
2- in your opinion, do you think that Ehrlichia and Mycoplasma are enough to think of a possible brain infection that causes his bulbar symptoms? Even if Lyme, for now, is negative?
3- my father is fine, in good shape. Just problems in speaking, nasal voice, little dysphagia and has fasciculations. Nothing more. He walks, he does everything by himself wthout problems. He also eats and drinks. So I don't think he has "severe bulbar symptoms" for now. He has them, but maybe not "severe". Do you think there are great risk in taking doxycicline 500mg?
4- If he has a Herxheimer reaction, what to do? Stop doxycicline for some days? Or what else?

I asked all questions, so I think I have no others. I will keep the forum informed.


48.  Sarah Vaughter    Thursday, August 28, 2014

I even took everything in a single dose for a few years, after my stomach got used to it but it's indeed better to spread over two doses. I would start very slowly to see how bad any Jarisch-Herxheimer is, with 100 mg for a few days, then 100 more for a few days, etc.

There is little to no danger that the infectious organism, if it's bacterial, gets resistant against Doxycycline when this is under-dosed or over time, because the bacteria in the CNS divide and grow extremely slowly, otherwise the patient would have died in mere days from the moment of infection. Mutations only occur during cell division so the rate of mutation is orders of magnitude smaller, with spirochetes such a Bb sensu lato.

500 mg is on the low side, especially if your father isn't really slim. The final dose needs to be at least 600 mg/day and you may need to alternate with moths of 800 mg/day, or 500 mg/day will only make him miserable forever. It will likely prevent him from deteriorating though.

However, such high doses also make the patient feel bad, since the spirochetes (CNS infections leading to ALS, MS, Parkinsons, CFS, Alzheimer etc. are usually spirochetes, as found in MS research I wrote about) will become permanently motile in their attempt to swim away from the antibiotic tissue levels. Spirochetes drill straight through neurons, that's the problem.

Scientists found ordinary dental gum bacteria (oral Treponema) as the cause of death due to brain infection in "Alzheimer" patients so yes, any mycoplasma, any bacterium in the brain can eventually cause death because the CNS is immune-privileged. The immune system there is rudimentary.

The sooner he starts the lower the likelihood of risky deterioration upon treatment.

Severe herxes should not be allowed to happen because they cause further damage to the CNS. A herx is a combination of mechanical damage caused by motile spirochetes seeking lower tissue levels and the immune system seeing pyrogens and making antibodies (inflammatory immune reaction). Toxins most likely do not play a significant role.

Treatment will often need to be life-long, because it is impossible to attain a bactericidal tissue level in the brain, for Doxycycline without suffering too much damage from its toxic effects. I have been on Doxycycline for 14 years and am still very slowly improving.

When aquired in bulk, Doxy and Mino have to be kept cool, preferably in the freezer. It can chemically alter upon long-term storage at room temp. and the changes can kill you due to intercranial pressure.

I am not a MD. This is not medical advice but personal opinion only. Following my advice may cause death.

49.  NKIT    Thursday, August 28, 2014

Thanks again, you are wonderfull. You answered to every question. You are really helping us. You just forgot one question: should we repeat the borrellia-test after some weekes that he takes antibiotic (antibiotic provoked test)? How many weeks, if yes? And just blood tests, or also urine?

Thanks, Thanks, Thanks.

50.  Sarah Vaughter    Thursday, August 28, 2014

Current tests are useless to detect CNS infections of the CNS for a variety of reasons:

Antibody tests are useless for the following reasons:

1) They have been deliberately made insensitive on the behest of insurance companies

2) They lack crucial bands due to patents

3) Very ill people have all antibodies bound to the infectious agent

4) Chronic CNS infection results in no antibodies because the CNS is immune privileged (an infection there does not result in antibodies)

5) etc. etc.

PCR tests are useless because:

1) There are 200 varieties of Borrelia and who says it's Bb - it may be another bacterium. You'd often need a separate PCR for every strain.

2) There simply are no Bb spirochetes in spinal fluid. Not a single one, as Brorson found. They can't survive there and encyst and the cysts die relatively soon (several weeks). Meaning, not even a PCR on spinal fluid will have the slightest reliability. Blood is highly oxygenated and Bb is microearophilic so also a blood PCR will be useless.

But if you think a positive test will be useful, then you should test as much as possible - blood, urine, spinal fluid using as many different "reliable" tests as possible (FedEx the material to a reputable lab such as Igenex and a German reference lab with experience in Lyme for ex.).

I'd let two labs do at least two different tests each, and don't even bother if they're not antibiotic-provoked- they will be negative in that case. But as I said, there are no reliable tests - otherwise the cause of ALS, MS, Fibromyalgia, Alzheimer, Parkinsons, CFS etc. would already have been non-controversially found.

Antibiotic-provocation is important, as Dr. Martz found. The immune system "sees" the dead fragments and makes antibodies.

ELISA is totally useless. WB is not much better. You have nearly no chance of finding which bacterium it is, if it's a bacterium.

51.  NKIT    Monday, September 1, 2014

Hi Sarah, thank you again for the informations you gave me.
Today we got the results of the MRI (in High Definition) of my father's brain. Nothing was found. Just a little "hypersensivity of T2 signal in brain-spinal-cord". And they told me this is another result that make them think about ALS and not to CNS/Brain infection. What's your knowledge about this? Could someone have a brain-infection with Als symptoms, and have a "perfect" MRI with no strange signs?

I told them that my father has Mycoplasma infection + Ehrlichia (and Ehrlichia is trasmitted by the same kind of tick of Borrelia!!), but they said again: no brain infection, but bulbar Als.

This week we are going to see one of the best LLMD in our country. I don't know what he will say. But then I'll give my father 500mg doxycicline and see what happens.

52.  Sarah Vaughter    Monday, September 1, 2014

You can have a "perfect" brain MRI (or they will just _decide_ to tell you it's "perfect") and die of a brain infection. The resolution of a high-resolution MRI is wholly inadequate to see demyelination and disseminated neuronal damage caused by a neurospirochetosis. There are plenty of dead people from neurosyphilis and their corpse still has a perfect brain MRI. More useful would be a SPECT scan but also that is a limited tool.

I had a "perfect MRI" while I had incontinence and a half-paralized left arm as well as a plethora of other severe symptoms (waking-apnea, 120 bpm tachycardia for 2 years etc.) All the while testing positive for active Lyme infection on several tests administered by a reference lab in Germany (a lab that dictates the standards for an entire German "province"), after being on 400 mg/day doxy for the past 5 YEARS. I was so ragingly positive that they pleaded with me to send them more serum, because I was "bilderbuch positiv" and they wanted to use my serum as some kind of new reference standard because I was infected with two borrelia strains simultaneously. I still have all the papers, the test results, the names of the doctors an lab technician with which I talked on the phone for nearly two hours afterwards (private conversation on how she claimed she discovered a deliberate sabotage of the test by the manufacturer to make it less sensitive and she wanted to "leak" this to me). BTW they tested me for free, so it couldn't have been with commercial motives. They were nearly begging me to send them more serum, since they'd never seen someone so badly infected before. I still remember what she emailed me: "It is bad news for you but to us it's very interesting"..

At that time I was so ill that stopping doxycycline would have meant my death in less than three months.

Also, those docs are talking nonsense when they claim that "real ALS does not show up on a MRI and Lyme does". Both Lyme and ALS are slow, progressive destruction of the brain. Both show up on an MRI only when you're very ill, and rather lucky that it shows up at all.

There should be some reaction to a single first dose of 500 mg doxycycline. But keep in mind that Dr. Marz had zero improvement after three months of IV antibiotics and yet he persisted and after 9 months he was well on his way to be cured. My reaction to my first 200 mg of Minocycline was spectacular, with visible skin rashes, utter dizzyness (was falling on the floor, walked into doorposts etc.) and even stranger bodily phenomena. But best would be to try it for a few days, just to be sure. Tissue levels need a couple of days to reach proper levels.

53.  NHSteve    Friday, September 5, 2014

My posts have not been going through for some reason. My wife has been on doxy for six weeks now. Having difficult time swallowing liquids, not food. Continues to lose weight. Muscle fasciculations worse, speech slurring worse. I guess these are all good signs but she is getting frustrated. Trying to encourage her to hang in there. Did you experience similar effects?

54.  Sarah Vaughter    Friday, September 5, 2014

We do not allow postings promoting or even mentioning nonsensical "alternative" treatments to ALS because we consider this approach to be costing human lives and anyone persuaded that a diet or a food substance is a solution to ALS is one more dead body.

So when you do not mix in comments/questions about any type of unproven, illogical treatment approach, your comments will be approved. This site is intended as a scientific resource, not a general social meeting place. Anything not scientific or on the topic of antibiotic treatment/Lyme testing can be censored in an attempt to save lives.

After my thorough investigation into this subject, I consider such postings to be insulting, since they imply that everything I wrote is nonsense. People can disagree with me and claim that coconut oil kills spirochetes beyond the blood-brain barrier, but they better explain, using scientific evidence, how those molecules enter the brain.

It's human lifes at stake - please keep your contributions extremely to-the-point and thoroughly scientific. Not scientific = magic/religion/dogma/opinion. All that has no place on any of my sites. We only deal in hard science.

Whenever you ask a question, be specific. "On doxy" is meaningless. How much doxy? Neuro-Lyme, when treated with SUFFICIENT doxycycline, improves SLIGHTLY on a month-by-month basis. Meaning, after 4 weeks of treatment, you'll be able to identify some improvement here, but often, esp. the first year or two, you'll see worsening symptoms elsewhere. This is due to increased inflammation, since the immune system "sees" the dead bacterial fragments now. And it is due to increased spirochetal motility. The first weeks of me taking antibiotics I thought I was going to die any moment. And that feeling persisted for 2-3 years.

Note that if you stop taking the medication for even a single week, you'll be pushed back another month or so and have to start all over again.

Antibiotics, esp. when not administered properly, can kill folks diagnosed with "ALS". That's just how it is, due to factors I already explained. The medical trials testify to this risk. However, antibiotics can also cure some people with "ALS".

Your wife's worsening symptoms may be a good sign, maybe a bad sign. I would need much more details as to EXACTLY what happened after taking her first dose, EXACTLY in great detail ALL changes in symptoms, etc. However, I do not have the time to actually look into this. It is you (pl.) who have to take matters into your own hands. Sorry to be curt - I am autistic and I have absolutely no empathy whatsoever. I am a science-absorbing/disseminating robot.

55.  NKIT    Saturday, October 4, 2014

Hi Sarah, do you remember me? I am sorry to disturb, but if there is someone I trust, is you. As you know my father had Als-bulbar diagnosis and after reading your wonderful ebook he was tested by infectolab (no antibiotic provoked), they found only Igg ehrlichia+mycoplasma, no Igm. Borrelia negative, also LTT negative. Cd57 borderline (110). And here are the news.
I found a doctor in Italy who made other tests. Found again ehrlichia+mycoplasma (Igg, no Igm), cd57 from borderline now is negative (don't know the value yet). Borrelia: nothing again. No babesia, no bartonella, no Tbe. He said: we can however try oral minocycline+plaquenil for 1 month, then just plaquenil for others 2 months. The italian doctor tested also liver enzymes and some blood levels, but found nothing strange. Meanwhile we went to the famous german clinic. They made another LTT (no antibiotic provoked, still don't know result but I think it will be the same of the test in august, so maybe negative). They said that they will treat my father in any case.
What do you think about? My father still walks, but with fatigue more and more. Till now, nobody gave him antibiotic.
I am so sad: liver values are ok, first LTT test was negative, found just ehrlichia+mycoplasma but only Igg. RMI, as you know, is negative (and was a 3 Tesla, so a HD Mri). Cd57 was borderline in august but higher in september. Now we have to chose between the 2 options: the italian one and the german one.
But real problem is: after all these negative tests, after liver tests, blood count, cd57, Ltt negative, just igg ehrlichia+mycoplasma, we don't see anymore one hope of infection. My father's progression is so "regular", every day is worse than the day before, no strange signs, no strange symptoms changings. I can't see anymore a hope. He will be treated soon. But do you think it's just to do it, or that even all these negative tests could let a real even if small hope?

Thanks a lot. Really thank you.

56.  Sarah Vaughter    Saturday, October 4, 2014

As I wrote many times before, tests are extremely unreliable unless they come from a certain very limited number of manufacturers. And even those tests are very unreliable (useless, bascially) unless they are antibiotic-provoked. You did not mention any provenly reliable test being used, and you said they weren't antibiotic-provoked.

On top of that - there are countless bacteria that could be the cause. It is impossible to test for all of them. Oral Treponema for example was found in a large number of deceased Alzheimer patients' brains. (J. Miklossy)

Since testing has been proven to be so unreliable to be practically useless (read: sending people to their deaths for being falsely negative or simply not the right test for the infection), I disagree with testing being a prerequisite for treatment. I advocate that when a person experiences chronic neurological problems, that a proper antibiotic trial is done to establish whether or not a bacterial infection is the cause. If the pateitn reacts in any way (positively or negatively), you have your answer: "Yes". This approach, when done correctly (correct antibiotic, correct dose, correct duration, correct evaluation of changing symptoms) has a 100% success rate, whereas tests simply do not work.

The only issues preventing patients from adopting this approach are various unfounded fears and the difficulties in obtaining the proper medication.

The entire bio-industry uses a variety of antibiotics, but a dying man usually can't get a few months' worth to test a hypothesis.

I have been since 1999 on 600 mg/day Doxycycline. When I stop this medication, two days later I start to deteriorate. I once, years later, as an experiment stopped treatment for an entire month - the maximum I could muster without ending up in hospital. It took me one year to recover to the previous level. I also once stopped two weeks. It took me half a year to recover from that. Stopping for a week takes me two months to get back to my previous level. Whatever the doxy does for me exactly, I know that it keeps me alive.

57.  NHSteve    Tuesday, October 7, 2014

On Doxycycline for about three months now. No improvement in speech or fasciculations yet. She is getting discouraged.
What do you think about the ice bucket challenge? She won't even watch any of it.

58.  Sarah Vaughter    Tuesday, October 7, 2014

What was her reaction on the first two, three days of getting 600 mg/day Doxy? Any kind of physiological or neurological reaction or change?

59.  NHSteve    Tuesday, October 7, 2014

There was not major increase in symptoms but they did increase since she has been on the 600/day. Meeting with Lyme doc Friday so may ask about other antibiotics to look at. Still slurred speech has gotten worse, trouble swallowing liquids not food, fasciculations little worse. Has lost about 30 lbs and getting arthritis in hands, trouble gripping anything. Trying to keep strength up

60.  Sarah Vaughter    Tuesday, October 7, 2014

So there was a sudden, immediate increase in symptoms immediately when tissue levels where high. That would point to a neurological infection. Unfortunately, I do not think that much can be done except continuing with 600 mg/day of doxy. There basically are no other antibiotics suitable, not even IV antibiotics, as I have explained on this site. Minocycline will cause an even greater initial exacerbation of symptoms.

I am not a doctor and this is personal opinion only.

61.  NHSteve    Tuesday, October 7, 2014

Ok. We'll stay with it and keep you posted on progress. Thanks

62.  NHSteve    Tuesday, October 7, 2014

Maybe try to add tinizadole

63.  Sarah Vaughter    Tuesday, October 7, 2014

This anti-protozoal has been suggested as a cyst-buster but it only seems to work in vitro, whilst increasing the likelihood of an opportunistic fungal infection.

64.  NKIT    Monday, October 27, 2014

Hi Sarah. The treatmente just started in the famous german clinic/lab. Even - for now, and without antibiotic provocation - borrelia was not found (they found rickettsia, ehrlichia, mycoplasma and chlamydia) we started the treatment for my father's bulbar Als. It will be iv. Azitromicina 500mg + oral minociclina 200mg. Then after some weeks it will be oral Azitromicina 600mg + oral minociclina 200mg, for months, at least 6.
What do you think? We hope to see some improvement in 2/3 months.

65.  Sarah Vaughter    Monday, October 27, 2014

Azithromycin is useless because it does not penetrate the blood-brain barrier and the dose for Minocycline is by far too low to improve the situation. Such low doses of Minocycline in ALS patients are associated with a sharp deterioration resulting in an earlier demise, and the reason is that the bacteria will try to migrate to lower tissue levels, destroying more brain tissue as a consequence.

Also, I see no reason why Minocycline was chosen as opposed to Doxycycline. Minocycline has a lot more side effects (it does come with markedly less sun sensitivity though), esp. at higher dosages and longer durations. Doxycycline is the drug of choice for life-long treatment in the 600 mg range.

Also, IV is completely unneccessary and even risky. Look like the lab is trying to make money with useless treatments.

66.  NKIT    Tuesday, October 28, 2014

Sarah, how can I thank you? I know you are not a MD, but I wanted your opinion again, and you gave me. Now I'll try to do my best. We must play this chance in the best way. You are great, your book is great, it contains all the informations needed, in just one book. And you then replied me several times. Your advices for me are really important. And if no-one wants to do "THE" treatment, I mean the right one, I think I'll risk on my own and don't know how but I'll find doxycicline and will give him 600mg (300mg twice a day). It's a lot of time, from the diagnosis, that I 've spent in finding the lab for the tests, then other lot of time spent in finding someone who could treat him. I want to play this chance at best. Because it's our last one. Thank you from my heart.

67.  Sarah Vaughter    Tuesday, October 28, 2014

600 mg Minocycline is a very high dose and if there is a brain infection of bacterial origin, this dose should have a strong effect. Inititally very negative, later hopefully positive.

Please don't hold me responsible when the patient dies very quickly on such a dose. It is known from the medical literature that this can occur when treating ALS with Minocycline.

Please familiarize yourself with the Jarish-Herxheimer phenomenon.

68.  NKKIT    Thursday, November 6, 2014

Hi NhSteve, can we stay in touch?
write me,
I'm not a doctor, just the son of a patient like your wife. I would like to keep in touch to exchange experiences without overflowing Sarah's board.

69.  NHSteve    Saturday, November 8, 2014

Doc changed her antibiotics a month ago from 600/day doxy to three different. Now taking Rifampin, 600mg/day; Clindamycin HCL, 600mg/day; Cefuroxime axetil, 2000/day. She saw her symptoms go back to more like they were a year ago, fasciculations got worse, speech worse, more phlegm in throat, trouble swallowing liquids, arthritis in hands getting worse, down about 30 pounds which is holding fairly steady for several months. Saw doc yesterday and he told her she needs to be more positive and that it will take some time to start feeling better. She did have a couple of days (10/14 and 10/22) that she (and others) thought her voice sounded good. Guess we should be thankful we did not just accept ALS diagnosis or she would be much worse a year later with no treatment! Thank you for sharing your knowledge and experience. By the way, when I talked to her neurologists office a couple weeks ago, they said they did not know if this was ALS or Lyme. First time I have heard them even acknowledge this and also said abnormal EMG could be caused by Lyme! Maybe we are making a small amount of progress!

70.  Sarah Vaughter    Saturday, November 8, 2014

AFAIK, none of these abx have sufficient bbb penetration to be long-term effective, meaning it was a bad switch IMO.

The molecular weight of Rifampicin for ex. is > 500 Daltons. Not good.

71.  NHSteve    Sunday, November 9, 2014

Was afraid you would say that. I have her going back on Doxy 600/day tomorrow. Will talk to doc on Monday

72.  NKKIT    Wednesday, November 19, 2014

Hello Sarah, to avoid to lose time, I'll ask you one thing.
The problem is that my father has a serious dysphagia that is more and more a big problem. Even swallowing pills, tablets or capsules is almost impossible.
For this reason, he is taking Minocin breaking the capsules and putting the powder in a glass of water, shake it and then drink. In Italy Minocycline is sold only in capsules. One doctor told me: "opening the capsules, putting the powder in water and then swallow is useless. These capsules are made to be swallowed entire, if you put the powder in the glass and swallow, the effect of the antibiotic is almost zero!". Do you agree, Sarah?
I thought it could be a good reason to switch to Doxy, but here it is sold only in tablet (no capsules, as Minoc.). He could eat the tablet, but before swallow them he must break them, so it is the same problem: they won't arrive entire in the stomach but in powder melted with saliva and water.

Second question: if a patient has a such severe problem with swallowing, what can he do? Switch to other antibiotics that are sold in liquid or sirup? Switch to IV? And which type of antibiotics?

Thanks for your great help!

73.  Sarah Vaughter    Wednesday, November 19, 2014

That doctor does not understand basic pharmacology. Tetracyclines are delivered in non-enterocoated capsules and even tablets exactly because they are not degraded in the stomach.

The powder does not properly dissolve in water though and could better be mixed into something with the consistency of yoghurt or buttermilk. Contrary to popular myth, diary products do not significantly degrade Minocycline or Doxycycline. They do degrade Tetracycline.

Another big risk with mixing with water is that Doxy and Mino are caustic to the tissue of the esophagus and can cause severe burns there. So it's important to mix it into buttermilk or yoghurt in your father's case, because they do not really dissolve or mix in water well and rests can remain in the throat and esophagus.

Doxycycline and Minocycline are the preferred antibiotics for Lyme. IV has not been shown to be more effective, but carries much greater risk.

74.  NHSteve    Thursday, November 20, 2014

She is back on just the 600/day doxy for about ten days now. Still feels lousy, getting sick to stomach and throwing up a few times. Speech still bad, fasciculations too. Still losing some weight. She is getting discouraged and still has ALS diagnosis in her head which isn't helping. Keep you posted on any positive developments.

75.  Sarah Vaughter    Thursday, November 20, 2014

I think all she should hope for is to survive indefinitely, with that treatment. Meanwhile the miserableness may persist forever. I have been on that dose for 16 years and I still feel bad. Progress is extremely slow and can only be measured by the month. Very slightly better each month. Stomach upsets on Doxy are common, when the medicine is not "surrounded" by food in the stomach. It takes months to slowly get used to Doxy irritation.

76.  NKKIT    Monday, December 15, 2014

Hi Sarah! I have some (bad) news.
A little resume (because you receive lots of messages):
- my father diagnosed with Bulbar Als
- had lab tests in German Lab (not antibiotic provoked), they found Rickettsia, Ehrlichia, Mycoplasma, all IGG not IGM. Lyme negative.

- remembering your opinion about antibiotic provoked tests, we started the treatment. They gave my father mynocicline 200mg/day, today is the 45th under mynocicline.
- No improvement for now, ALS seems progressing
- After 40 days of 200mg mynocicline, we had new Lab Tests in German Lab (Infectolab): nothing! They found nothing. No more bacteria. And no Lyme, so also the antibiotic provoked test was negative. No one single borderline value, nothing.

In your opinion, what does it mean? That my father has just bulbar ALS?

I know you prefer Doxy at 600/day, but don't you think that with 200mg myno for 40 days, at least we would have had a borderline result? Some positive brands/strips? Here, we had nothing, all negative.

77.  Sarah Vaughter    Monday, December 15, 2014

The lab found three different infectious agents prior to antibiotic provocation. This always makes me suspicious that the lab or test(s) is/are not credible, but OK, let's give them the benefit of the doubt and let's say those tests were bona-fide.

You are unclear whether the second tests were done by the same lab, were they?

Statistically, it seems unlikely that a person with three different infections suddenly has no more infections after 40 days of 200 mg Minocycline, but OK, it could be possible. Or the tests are unreliable.

No Lyme found - this means nothing, because they did not do an antibiotic-provoked test. The second test was done after what looks to me as an overly long antibiotic provocation. Secondly, what Lyme test exactly has been done, and what is the reliability of it. Lyme tests largely are extremely unreliable in case of chronic Lyme.

As to the dosing: 200 mg Minocycline should lead to a deterioration of ALS. Some ALS patients even rapidly deteriorated and died as a most likely consequence of giving - in my opinion - such a low dose, since in my opinion it causes increased movement and thus damage of the spirochetes. The bacteria will still be motile and seek a location with a lower tissue level of the antibiotic. What's needed is a fully bacteriostatic dose in the CNS to at least arrest the disease.

The Lyme test that Infectolab does rely on the health of the patient's immune system. If the immune system is overwhelmed or weakened, a negative result can occur:


Some reasons why Lyme testing is totally unreliable and should thus not be relied upon, when deciding upon a course of action (I did not write this, seems to be badly translated):

+ The human immune system are all different genetically and developed differently from birth
+ The Human immune system fluctuates in antibody production over time
+ The levels of antibodies fluctuate over time along with pathogen gene expression variation over time
+ The surface antigen expression and amount and expression time vary by genotype
+ B cells create antibodies on trial and error basis until they get a hit on an epitope the proliferate for this one
+ Not every immune system creates the same set of antibodies matched to the same antigen epitopes
+ The pathogen fluctuates its surface antigens expression over time and variable immune response stress factors
+The immune system produces different antibodies to the same antigen
+ One 41kDa antigen can be as many as hundreds of amino acids with many amino acid epitipe targets
+ Antigens have many epitopes for antibody binding that are all effective for the immune function
+ A typical spirochete might have as many as 20 or more target antigens
+ These epitopes can be anywhere from 3 to dozens of amino acids long and overlap
+ These epitopes can be linear or cross a protein fold
+ The many epitopes per antigen amino acid sequences vary from strain to strain to species in unpredictable ways
+ Genotype variations is a major factor, the slow rate of discovery and admission is a continuing problem
+ All the genotype antigen and their epitope variants is not known
+ Test developers tend to blind themselves and make simplifying assumptions about the above or fail
+ There is lack of competence and leadership on how to handle these variables by suites at the CDC/FDA
+ Anybody brave enough to push for acknowledgement of these issues and coordination is pushed out
+ Test developers only care about special cases like "early testing" to avoid and simplify assumptions
+ Simplifying assumptions lead to test good at one case but used for all cases which doesn't work
+ Success by developers is not measured by how well it performs in the "failed" cases
+ Developer success is measured by old FDA rules and cost/statistical performance
+ Sine a 100% perfect test is impossible, everyone agrees to agree and ignore the "failed" cases as its easier
+ Even the best tests require consistency of implementation at labs which is impossible due to complexity
+ Nobody can afford redundancy which is one way of getting closer to 100%
+Redundancy means multiple optimized tests that together cover as many issues and assumption problems
+ and on and on

I wish your father the best. Antibiotics often can do very little against advanced neurological Lyme disease. I have comparatively mild symptoms and all antibiotics did for me the past years is keep me stable, and I am on a 2-3 times higher dose than your father. If it is Lyme causing these symptoms.

78.  NKKIT    Monday, December 15, 2014

Hi Sarah: thanks for your answer! Thanks a lot.

The first (not antibiotic provoked) and the second test (antibiotic provoked after 40 days of minocycline 200mg) were both done by Infectolab. Speaking about this last test (the second), it was LTT test for Ehrlichia, Chlamydia and Lyme. But for Lyme, not only LTT but also the antibodies with a lot of stripes/bands. All negative.

If there was Borrellia, don't you think we would have seen anything in the tests, at this point? At least some borderline values? Some positive bands?

Another thing is CD57: 3 months ago was lower than now, that is near to the normal range (near the lower value of the normal range). So it seems also that the situation is "better" than before.

Because as I told, now the big deal is: at this point it's for sure only ALS? Or we can still think about an infection? And what to do? Going on with antibiotic? Or leave them, because it's just ALS and nothing else?

Thank you a lot for your answers.

79.  NKKIT    Tuesday, December 16, 2014

Hi Sarah, did you receive my last comment? Just ask because I can't see your reply. Don't worry, reply when you have time.
Thanks again, a lot.

80.  Sarah Vaughter    Tuesday, December 16, 2014

Have they personally showed you the bands on the test result? How dark were they? Which bands have been tested for? What is the manufacturer of the tests? It is very common, in fact the rule rather than the exception in my opinion, that Lyme tests are false negative in case of chronic neuroborreliosis. I heard from a German lab technician, ten years ago, that her patients started to test negative while initially testing positive on the same tests. Turned out the test manufacturer had made the "development solution" weaker, presumably at the request of the insurance companies or the government. Tests are useless or even dangerous to rely on for many other reasons: The most important bands are patented so they won't test for them.

As to your second question: I disagree with your assertion that there is such a thing as "just ALS and nothing else". In my opinion, sporadic ALS (as opposed to familial ALS) is caused by a CNS infection.

Of course this is just my opinion.

Antibiotics, when used absolutely optimally, often will still not lead to much improvement. I doubt that progressed ALS responds very well to antibiotics because it took years with 600 mg doxy/day for my mild, partial paralysis in my left hand and arm to disappear completely. I had severely reduced strength, about 33% of what's normal, with bouts of dropping things due to total weakness. Agressive treatment should commence way before an ALS diagnosis is given, and treatment should be life-long.

81.  NKKIT    Wednesday, December 17, 2014

Hi Sarah. Thanks again, you are always so clear and complete in your answer, trying to help us in this terrible situation. What can I say?
I did not see the bands, but only the results written on the paper. Here they are (all negative, only BlotIGGp41 positive):
Borrelien Blot IgG
-- Blot IgG p18
-- Blot IgG p19
-- Blot IgG p20
-- Blot IgG p21
-- Blot IgG p58
-- Blot IgG OspC
-- Blot IgG p39
-- Blot IgG p41 POSITIVE
-- Blot IgG p83
-- Blot IgG LBb
-- Blot IgG LBa
-- Blot IgG VlsE-Bg
-- Blot IgG VlsE-Bb
-- Blot IgG VlsE-Ba
Borrelien Blot IgM
-- Blot IgM OspC Bg
-- Blot IgM OspC Bb
-- Blot IgM OspC Ba
-- Blot IgM p39
-- Blot IgM p41
-- Blot IgM VlsE-Bb
Specific IgG- and -IgM-antibodies are not detected by immunoblot method against Borrelia burgdorfei.

Borrelia-IgG (ELISA) 12.15 RU/ml
Borrelia-IgM (ELISA) 2.48 RU/ml

Borrelia burgdoferi Elispot
Borrelia burgd. fully antigen
Borrelia peptide mix
Borrelia LFA-1
Diagnosis Borrelia
The Elispot does not indicate cellular activity against Borrelia burgdorferi.

CD57 was borderline in august (110 was the value)
CD57 was "positive" in october (80)
then he started the treatment, and now is borderline at 127 (130 is the lower limit of the normal range)

Then they made also LTT for Ehrlichia, Chalmydia. Negative both.

So it seems that antibiotic (mino 200mg for 45 days) killed Ehrlichia and Chlamydia (they were positive before the treatment). But my father is still progressing in ALS symptoms, weeks after weeks. Now we are trying to understand what to do: stop everything? going on with mino 200/day, change to doxy 600/day and see what happens? Or maybe try ceftriaxone (I know your opinion on it, that doesn't cross the BBB) because when you find someone with ALS writing about positive treatment with antibiotic, it seems that 99% speaks about ceftriaxone. Also in your great Ebook, almost all the people speak about Rocephin.
We are really worried and confused. You are one of the most important person for us in this bad period. Is it still your opinion to switch on 600 doxy, in a situation like this? I know you are not a medical doctor, and your reply is just your personal opinion.

82.  NHSteve    Tuesday, March 10, 2015

Doc wants to begin IV cocktail of Rocephin (2g), Tinidazole, Azithromycin, Mepron. I asked him to sub Mynocycline for Rocephin for better bbb penetration. Thoughts?

83.  Sarah Vaughter    Tuesday, March 10, 2015

I provided the study that Rocephin does not penetrate the blood-brain barrier. Tinidazole does, but only _may_ do something to the cysts, not the actual spirochetes. Zithromax does not penetrate the bbb either. Atovaquone should have bbb penetration but there is no evidence that it does anything to Bb. So this cocktail will only give you a significant risk of developing an opportunistic fungal infection (combining an "azole" with a powerful broad-spectrum antibiotic is especially dangerous in patients with decreased ability to perform oral hygiene or patients at risk, due to immobility, of lung infections etc.)

I would never accept the recommended treatment. In my opinion, it will have no effect whatsoever. And I think this is clear from medical literature and known biochemisty (of humans and of spirochetes).

Rocephin in that dose is provenly too low (because it does not sufficiently penetrate the bbb ). Dr. Martz had no improvement on Rocephin until he doubled the standard dose (2 g is AFAIK the standard dose).

I would instead take Doxycycline and Minocycline, alternated depending on tolerance, photosensitivity, severity of the Jarisch-Herxheimer effects etc. Very high dosages, no breaks. I am a layperson and you should take this as a personal opinion, not solid medical advice. Educate yourself thoroughly before accepting any kind of opinions, coming from a medial professional or a layperson.

84.  NHSteve    Wednesday, March 11, 2015

I read that. That's why I went back to him for Mynocycline instead of Rocephin. I'll let you know if he agrees. Going IV as she is having a lot of difficulty swallowing pills (Doxy). And the sun is a killer as we move into spring.

85.  Guest    Friday, March 20, 2015

Hi Sarah !
Thanks for the helpful suggestions i have been reading here !
Here my question:
i am on IV of ceftriaxone 4g X 4 days a week.. nothing really happened since i started 10 weeks ago.
I was on 200mg daily of doxy and, when i switched to minocyclyne ( 2 months ago ) of 200mg daily, i noticed a really bad deterioration.. exactly as you said !
I switched back to doxy today.. 600mg a day. Do you think is enough ?
Should i keep minocyclyne instead .. maybe at higher dosage ? ( i am scary about minocyclyne !! )
Did you had a strong herx on doxy ?

Thanks a lot !

86.  Alessandro    Friday, March 20, 2015

Hi Sarah !

First of all .. thanks for everything you are doing for us !

I am on ceftriaxone 4 g X 4 days a week for about 10 weeks.. nothing really happened since there.

I started doxy 5 months ago at 200mg daily .

I switched to mynocycline 200mg daily a couple of months ago and i rapidly deteriorate as you mentioned ! ( from left arm it goes to right.. and now my legs are getting bad as well.. even i can keep walking )

Today i switched back to doxy at 600mg... is it enough ?
I am scary to mynocycline at this point !
What type of herx should i expect ? ( what the strongest you got and how long before getting better... if this works ! )

87.  jklssss    Wednesday, April 29, 2015

Hi Sarah !
I guess you are busy.. can you try answer me please ?
I am Alessandro ( post below )!
I login with different disqus user !

88.  Sarah Vaughter    Wednesday, April 29, 2015

I am not allowed to give medical advice and neither do I pretend to have all the answers, but in my experience and understanding, 400 mg/day of Doxy is not enough, meaning you will slowly deteriorate or at least not improve. It is also a fact that 1 g/day will kill you in the end. A medical publication mentioned a man brought into hospital with multiple organ failure due to him having taken 1000 mg/day for a year. He fully recovered. I once read a microbiologist say that in his opinion, a dose of 1 gram of doxy (a bacteriostatic at lower doses) a day would be the minimum required to be bactericidal for spirochetes in the CNS.

Doses that are too low will kill you much quicker than a spirochetal CNS infection will do on its own. Clinical trials on ALS patients with Minocycline showd significant excess mortality. It is simple to explain why: Spirochetes are highly motile and penetrate tissue with ease. They are intracellular organisms. If you poor salt on worms, they start franticly wriggling in a reflexive attempt to get away from the poison. I've of course never tried that but I assume they will. I think snails do. Spirochetes do the same. You hit them with anything less than required to paralyze or kill them, and they start drilling holes at maximum speed, randomly through your brain. The scary thing is that they did experiments on dogs and they showed that Bb spirochetes could travel trough the dog faster than they did through the bloodstream. It sounds a bit extreme but it's a well known meme regarding spirochetes. They go very fast, straight through tissue. When they're peacefully eating away at your Myelin they have little reason to move around much and their damage can be more-or-less repaired by the body. So don't "Herx" too much. Take 600 mg/day of Doxy.

400 mg/minocyline or 600 mg/day Doxy are my recommendations for people with normal adult weight. You would have to experiment to keep the "herxes" as well as the symptoms under control. The Jarisch-Herxheimer reaction is due to bacterial toxins caused by dying bacteria. Lyme herxes aren't herxes. Lyme herxes are immune system reactions (inflammation) to moving spirochetes caused by them trying to find locations with lower tissue concentrations of antibiotic. Spirochetes are the most evolved bacteria, they are nearly animals.

89.  Sarah Vaughter    Wednesday, April 29, 2015

Please see my answer to Alex.

90.  jklssss    Wednesday, April 29, 2015

Hi Sarah !
Thanks a lo for response... really appreciated.
Just one question:
do you think should be better switch between doxy and minocycline alternate them for a period of time, eg: 1 month doxy and the next month mino ?
I lied.. 3 more !
Did you had strong reaction at the beginning of doxy ?
And, how long it took before feeling some king of "better" ?
What do you take to help immune system ?

Thanks again
Kind regards

91.  Sarah Vaughter    Wednesday, April 29, 2015

My symptoms were varied but the life threatening one was extreme tachycardia in total rest leading to an unspecified (because never recorded) cardiac arrythimias and hance the complete inability to sleep for seven days in a row. There were many other issues such as rashes on the palms of my hands and chronic pain, severe mental retardation of various kinds etc.

When I took Minocycline I could finally sleep a bit. The rashes on my palms finally went away. Many other serious symptoms suddenly appeared and remained for weeks, months or 15 years. I suddenly gained a localized headache which remains mostly with me to this day, only much milder. I suddenly got many inflammatory symptoms affecting joints and parts of the tendon system. The first weeks on Minocycline I bumped into door frames a lot. There were extrem, weird reactions such as extreme sweating from my palms. Sweat dripped off in drops and when I wiped my hands, new drops dripped on the floor in seconds. Extreme joint swellings, pain. There was vomiting. My pulse remained 120 in compete rest for two years. I was too sick to do anything much for half a year. My heart skipped beats a lot. The two years after that my pulse was 80 in rest. Now it's 60, which is normal for me. I had years of episodes with extreme sinus tachycardia.

The 5th year I had minor difficulties holding up my urine and I had waking-apnea - the body's reflex to breathe stopped working now and then. Very scary. You don't breathe for two entire minutes until an emergency system kicks in, making you gasp wildly for breath. I also had horrible feelings that I would get a heart attack, combined with a very nasty feeling of "losing contact with the body". Hard to explain. A very physically unpleasant feeling of weakness. It would happen outside and once I had to lie down on the ground for twenty minutes. Neurological, not psychological. The weakness in my left hand took about seven, eight years to fully subside. I was on a too low dose of Doxy during those years - 400 mg/day. Perhaps I took more now and then. I had many more problem. Too weak to stand up for more than a few minutes. Inability to control perspiration. Paranoid behaviour (grabbing a knife at the sound of the doorbell and not opening but standing behind it with the knife). Extreme discomfort at noises. Insomnia.

The immune system needs sleep and vit. D. I have no better recommendations.

Yes I do recommend switching doxy and Mino. Mino allows you to get some sunshine (vit. D) and it penetrates the bacterial cell wall better. I once felt nearly symptom-free on Minocycline. It lasted only a day though.

Feeling better can only be measured month-by month. I kept improving for about a decade, perhaps twelve years. Then it plateaued.

92.  jklssss    Wednesday, April 29, 2015

You're awesome !
I really needed to know what experience you had so far.. it help understand what is going on my body.
I will definitely switch doxy-mino .. i was on the windows and my right arm was under the sun for about 20 minutes and i get burn.. i need to have some sunlight especially because i am in sweden, very long dark winter.
I know what you mean.. sometime i feel better for few minutes, like i can walk without hanging me at the wall.
I will keep you updated .

Thanks a lot.

93.  Sarah Vaughter    Wednesday, April 29, 2015

You'll get burnt much faster on 600 mg/day. 2 minutes already.. Just take nothing for two days and then get a LOT of sun. Immediately after getting hte sunshine, take Doxy again.

94.  jklssss    Wednesday, April 29, 2015

It will be so fast taking away the doxy sun-burn effect ? Great.. i will do that.
I will switch to mino next week for about one month .. i hope it will be better.
Thanks for all nice suggestions !

95.  Sarah Vaughter    Wednesday, April 29, 2015

The severity of doxy photosensitivity is roughly equivalent to the tissue level of doxy to the power of two. Tissue half times of Doxy is quite a few hours.

96.  jklssss    Wednesday, April 29, 2015

Just after 2 days i will be able to take some sun !
I will surely do that.
Switching to mino next week .. hope it doesn't have the same side effect !

400mg mino a day will be fine, right ?
Thanks again for all suggestions !

97.  jklssss    Wednesday, April 29, 2015

Thanks.. that is interesting.
Do you think 400mg of mino daily will be enough ?

98.  Sarah Vaughter    Wednesday, April 29, 2015

Minocycline is "more powerful" than doxycycline so 400 mg Mino is roughly equivalent to 600 mg doxy. However if you've been diagnosed with ALS, it will be nearly impossible to strongly improve or not get worse unless you take the issue extremely seriously and better to err on the higher side. You have to observe what is a sufficient dose for you. I do not have all the answers. I am pretty certain, also from own experience, that no dose will cure Neuroborreliosis. The only thing you can achieve is that over YEARS of treatment, symptoms get quite a bit better. IF it's neuroborreliosis. Don't forget that neurosyphilis takes at minimum one year of highly-dosed treatment. Neurological infections are basically incurable and the sooner you start treating with the highest dose as possible, the better.

99.  jklssss    Wednesday, April 29, 2015

Yes and no... here the are 70% sure, in italy didn't .
I had several ticks byte over 5 years , a kind of rush, tested positive for erlichia.. so, i am pretty sure my symptoms are caused by borrelia... who knows for sure.
I will try 400mg first week, then 500mg and see how it goes.
I know you have not all answers.. but you've been study for long time, so... much more expert than most doc i know.
Really appreciated.. finger crossed !

100.  Maia Balam    Thursday, December 29, 2016

Hi sarah, I hope you are still around. I wanted to ask you if you think 200 mg of doxy is good enough for an early treatment for lyme on an 42k adult? thanks

101.  Sarah Vaughter    Thursday, December 29, 2016

No, that's too small of a dose, even for a person weighing 42 kg.

102.  Kathleen    Wednesday, February 22, 2017

Hi Sarah, thank you for your clear but confrontating book about ALS/LYME. My mother has been diagnosed with ALS in june 2016.
July 2016 we tested blood in Germany and that came back positive for borrelia. In august we went to a lyme specialist (the only one in Belgium). He put her immediately on azithromycine IV 3/week and after 6 weeks doxycyline 5 times/week IV.
In the meanwhile he did more research in her blood and stools.
Today she is taking 1 dose of minocycline from 100 mg/day!! This together with supplements as Quercumin, ATHP, vitamine B12, choline DHA.
We have to go back to her specialist on 3 march. I have already printed out everything i found from you but if i understand well my mother should take AT LEAST 400 mg/day from the minocycline? Or should we switch to Doxy again? Are the supplements we are prescribed useless? Thanks for your answer, hope you are still arround.

103.  Sarah Vaughter    Wednesday, February 22, 2017

Hi Kathleen. I am not a MD so these are my layperson's thoughts:
1. The supplements are useless.
2. 100 mg/day Minocycline is worse than taking no Minocycline at all. (such a low dose will only "stirr up" the bacteria, spirochetes are very motile and very damaging to tissue when they move to a place, hoping there will be a lesser antibiotic tissue concentration)
3. There is absolutely no need at all to take Doxy intravenously.
4. 500 mg/day is the absolute minimum for any sustained effect, with Doxy, even with a relatively slim patient. Microbiologists say that 1000 mg/day would be the minimum to make a dent in a CNS infection with Borreliae but such a dose is unmaintainably (= organ damage) high over many months so 600 - 800 mg/day is a better dose.
5. Azithromycin is completely useless, since it does not penetrate the blood-brain barrier.

104.  Kathleen    Wednesday, February 22, 2017

Ok thank you. Is 600/800 mg for minocycline also required? Or should we switch to doxycline in your opinion? I know you are not a doctor but i read the whole book and you sure know a lot of it.

105.  Sarah Vaughter    Wednesday, February 22, 2017

No, Minocycline is dosed roughly a third lower and has a much higher incidency of negative events, albeit much less photosensitivity. Please do your research because following the advice of people on the Internet (yes, I'm talking about myself as well) can easily get someone killed...

106.  Kathleen    Wednesday, February 22, 2017

I am researchimg for months and months but nobody can give me the answer we need: what does my mother need to stop progress of her symptoms. Clear to me is that the treatment we follow now will not be enough and just takes away time and money

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