U are onviously someone who never had Lyme. So you should keep your mouth shut unless you've experienced the hell of neurotoxins.

Before spouting off with hostilities and unsubstantiated nonsense, if you'd have read the about page you'd have read that I have been suffering from Lyme neuroborreliosis since 1993. Untreated for seven years, until it escalated. Since then, there were months of going in and out of hospitals - sometimes by ambulance - staying overnight on IV drips, oxygen, a full set of ECG leads and nobody managed to discover why I had such life-threatening symptoms until I found a lab that finally diagnosed me with the worst Lyme infection ever seen by them - I had been infected with multiple strains. Even after years of antibiotic (mis)treatment, I still tested positive for both IgG and IgM on a variety of tests (Western Blot, Immunofluorescence, PCR).

After that, I became very knowledgeable on Lyme. I started to correspond with LLMDs, studying the available research literature, met with microbiologists and finally started research on three books on Lyme disease. One book is finished and can be downloaded on www.als-cure.com.

It was I who postulated, before it was confirmed in a Lancet study, that Probenecid would compete with Amoxicillin for entry to the blood-brain barrier. LLMD's seek my advice because it saves them the countless hours of scientific literature study that I have done on the subject, as well as many years of treatment experience, turning a near-hopeless case into what I attained today by only oral antibiotics. I was so far gone with my Lyme that it was suggested I had rapid progressing MS. My first round of antibiotics put my in the IC ward and they had to use a defibrillator on me several times that night. I was subsequently in bed for three months because I could not walk. I had to pee in a bedpan and I had to be taken care of - I could not live by myself. Three months later, all I could do was lie in bed and sit in a chair, alternately, for another three months. Talking about a herx!

After all those years, I am still on antibiotic treatment because I rapidly deteriorate without them. I have reduced use of my left arm and I still have cardiovascular abnormalities and lesions in my brain. I am glad to be alive however (and quite OK now and stil slowly improving) - I did not think I would make the year 2000.

As I said in the article - I found no evidence for Lyme neurotoxins, and I think their myth causes unnecessary suffering.

Yes these people are out for your money. I believe Probiotics are necessary maybe some vitamins and baths . As far as all these other suppliments for lyme, most are not effective. Toa free cats claw may be ? Antibiotics are the main treatment with the "known suppliments" ginger for stomach issues nausea is ok. Be careful what you buy. I bought one lyme book but won't buy into any other b.s.

A girl with Lyme Disease and a parasite took medication for both diseases and tests showed that she had eradicated both diseases. Throughout her disease she visited the ER 17 times with intractable nerve pain throughout her body and seizures that she had developed from the disease. Her husband and family paid for a Lyme Literate Doctor to fly out to her because there were none in her area and she was in so much pain she couldn't fly in a plane. The doctor ordered a medication to detoxify Lyme toxins from her body. This girl had had pain for four years straight ranging from a 6 out of 10 to most nights a 10 out of 10. After 3 weeks on the toxin binding medication she began to get better for the first time in 4 years. 25% of people have a genome that prevents their body from removing these toxins on their own. This girls story is all a part of a documentary.

And by the way, it is illogical to think that these doctors make more money treating this disease. They certainly don't. Patients just end up paying more because these doctors are out of network. They by no means earn more. I commend their courage for being willing to take on patients that the medical world wrings their hands and has no idea how to treat...or should I say cure.

PS - Dr. Burrascano and Dr. Shoemaker are brilliant. I too have reservations on Schaller.

Tryptophan deficiency IS proven. There is science to prove it. I have had specific testing for it - Lyme interferes with the bio-chemical pathway which the body makes tryptophan from and actually turns it into a neurotoxin.

That seems exceedingly unlikely, do you have a link to the research that proves this?

Because chemical pathways can only be disturbed by the constant release of chemicals that block those pathways, and I don't see the reason - the possibility, even - why and how Bb would produce such a chemical, unless it would be in its great evolutionary interest to do so.

And why would a parasitical organism strive to kill its host so quickly by preventing Tryptophan synthesis. So unless you can substantiate your claim, I remain sceptical.

Do you have a link to the study that proves that "25% of people have a genome that prevents their body from removing "these toxins" on their own"? I think you are referring to Cholestyramine - a very toxic substance, unproven in Lyme disease:
http://mylymediseasetreatme...

"Having read much on this, I contacted my LLMD (Lyme Literate Doctor) and asked if I could try some Questran. He said he would gladly fill a script, however, he tried it with 100 of his patients and not one of them received any benefit from it, only adverse things such as bloating and constipation as it is very fatty. I also spoke with some other Lyme sufferers who said they too did not receive any benefit."

If you can point to studies that show clear benefit, let us know.

(In addition to that, I would like to see evidence for both the assertion of the gene deficiency as well as the toxins.)

Also, the name of the documentary you refer to would be helpful, so I can investigate these claims and the arguments they used. I will then get back to it here.

As to the "these people are out for your money" debate: It is not so black and white of an issue. There are real LLMD's and phoney LLMD's. The real ones can be divided in those that charge reasonable fees and those that don't (such as Burrascano did). The phoney ones practice ruthless self promotion (YouTube etc.) and peddle lots of expensive tests and supplements. Burrascano is a borderline case, also peddling supplements and, even though he became a millionaire with his clinic, begging for handouts to finance his legal defense and then terminating his practice afterwards - treason to us Lymies who contributed generously.

Burrascano is one of the reasons I started this site. Lyme patients, help yourself!

Self-help starts with educating yourself about the facts, such as the myth of neurotoxins. The neurotoxins story is used by doctors to deny proper treatment, and by quacks to make a living.

Shoemaker is a quack - I am supplying arguments in this very article. Anyone who claims there is such a thing as "harmless living Lyme spirochetes in the brain" has lost his marbles. That's a much more damaging attitude to our cause than "Chronic treatment-resistant Lyme does not exist". Shoemaker turns it into ""Chronic treatment-resistant Lyme with actual live bacteria in the CNS does exist but just ignore it - it's OK". Imagine what ID specialist will think when a much revered "LLMD" says that living Bb in the brain is "no problem"! End of story then, right? Case closed, no more treatment for Joe sixpack with a positive Lyme test.

"Brilliant" for Burrascano is a little too much praise. He kept prescribing Probenecid with Amoxicillin, even after a Lancet article said that that would lead to treatment failure in 100% of cases of neuroborreliosis, presumably due to a "competing" effect of both large molecules through the blood-brain barrier.

(Amoxicillin, being > 500 Daltons and poorly lipid-soluble can only penetrate the capillary vessels that make up blood-brain barrier a little when there is at least a slight encephalitis, but that is often the case in neuroborreliosis.)

If you ask me, every single supplement, including vitamins and probiotics is useless or near-useless. The same with books.

What Lyme patients need is antibiotics, antibiotics, antibiotics. Nearly no Lyme patient is on open-ended optimal antibiotic treatment. As long as you are not on the absolutely optimal antibiotic treatment regimen PERMANENTLY (that includes pulsing therapy) until you have no more symptoms that can be attributed to an active infection (and nearly all Lyme symptoms are caused by active infection, except lingering paralysis that should ALSO steadily improve with time!), any supplements will have nearly zero added value and are nothing more than a pacifier, a farce.

When you build your ego on the suffering of others you do realize the world sees you as a sociopath right? I cannot tell you what has been proven or disproven but for whatever reason detox methods like shoemakers not only took me from a 10/10 pain and removed some horrid calcification from my prostate and pancreas (did show on mri) but essentially saved my life, I'm still in horrid pain but at least pain killers have an effect now. I can understand wanting to argue the science but to block discussions that encourage horrible suffering in the name of your ego is monsterous. Unless you have had to fight through something yourself and seen how it feels you should not judge unless willing to accept the consequences of being responsible for the mass suffering your are now taking part in. The nazi's did that and it didn't work out well for them. When will doctors learn that arguing the science doesn't mean disregarding the treatment. hard science comes only after a theory is proven. If you never try theories you will never be able to prove or disprove it. Anything science hasn't found doesn't mean it doesn't exist it just means the mainstream hasn't accepted it yet. How many deaths or worse than deaths fate have to rely on so called scientist caring about their science and ego more than human suffering.

Thank you for comparing me with the Nazis and calling me a psychopath for speaking my informed opinion on the treatment and diagnosis of Lyme disease, in the hope some fellow Lymies will get proper antibiotic treatment instead of waste precious time and money on quackery. So many people with Lyme disease - a cottage industry of ruthless predators and clueless bandwagon-riding quacks has sprung up and most Lyme sufferers are just as clueless because most people just don't have what it takes to distinguish medical truth from medical baloney.

As to your: "Unless you have had to fight through something yourself and seen how it feels", well, I have been suffering from Lyme neuroborreliosis since 1995 and my case was really, really bad and still is bad. The only reason this website exists is my Lyme. I had to stop being physically active and was forced into more than a decade of medical literature research of all kinds, one paper leading to another. No amount of paper-reading helps if you don't combine it with a healthy dose of common sense, of course.

Why do people like yourself always automatically assume that someone you disagree with has no idea what they are talking about? I wrote a book about Lyme disease being a main cause of ALS, and am writing two more books on Lyme disease. Hundreds of footnotes linking to peer-reviewed medical research. LLMD's regularly email me because they know I've read more papers than they have time for. I do not voice opinions without doing my homework first. So far, there have been no neurotoxins demonstrated. All that we know is that we need antibiotics. But the quacks focus on denying us antibiotics and talk about "detoxing" instead. As soon as you hear that word, run as fast as you can.

I am in constant pain, still, after nearly thirteen years of treatment. I sometimes think of suicide to end the pain and other problems I still have. I am not the person I used to be due to my Lyme, and I am not sure how long I still have to live due to my Lyme. But how I suffered during the undiagnosed years and during the first years when treatment started - I could not walk for three months. After that, I needed rehabilitation for half a year. I was in and out of the ER for two more years, with cardiac- and neurological problems. I still have reduced strength in my left arm and hand.

Neuro-Lyme takes away most of your personality, your self. I am still a shadow of the person I used to be, and I resent the fact that I will have to live with the constant headaches, the insomnia, the debilitating fatigue, the inability to concentrate, the tendonitis and the variety of weird neurological symptoms for the rest of my life. But I am not complaining because it used to be a thousand times worse.

Lyme totally ruined my life and the main reason for my existence is educating fellow Lyme patients, because most have not put in the thousands of hours of research I have put in, and thus they are preyed upon by the likes of those why claim that "living spirochetes in your brain are nothing to worry about".

While you are comparing your fellow Lyme patients to Nazis, I am actually emailing microbiologists across the world, trying to learn more about this disease. Maybe you should shut up for a while, until you know what you're talking about?

Maybe you should go to Lymes Conn. and get up on your soap box say LYMES ISN T REAL LYMES IS IN YOUR MIND I bet a few locals would beat the livin hell out of you and send you running for your life.

Go get bit! Then come back and tell us all about it, bitch!

As I wrote just about everywhere on this site, I have been suffering from serious neuroborreliosis for a very long time now. I did a lot of medical literature research on Bb sensu lato (few thousand hours of work, few thousand dollars on purchasing the research papers) and there can not be found any credible data on neurotoxins. I suggest you post such evidence here, instead of insinuating that I don't have Lyme.

The fact that your quack blabbers about "neurotoxins" does not mean there exist such a thing in Lyme disease. I have taken it upon myself to educate sick people about the nature of their illnesses, and no amount of abuse will stop me. I am not sensitive to verbal abuse - only to stone hard facts and ruthlessly applied common sense.

My goal is that us Lymies will finally get taken seriously, and that includes correct antibiotic treatment, without the "neurotoxin" voodoo nonsense that only serves to discredit Lymeland. No bona-fide infectious disease specialist will take us seriously when we claim "neurotoxins" without a shred of evidence.

Good luck with your Lyme - with such an attitude you will need it.

Thank you for your veiled death threat for saying that Lyme patients such as myself need antibiotics instead of magical "neurotoxin eliminators".

The fact that you refer to my illness as "Lymes" instead of "Lyme" shows that you know nothing at all about the disease - not even its name. So I suggest you do your homework first before threatening someone who has studied this disease for nearly two decades and wrote a book about it - with more in the works.

There are some people who are unable to handle the antibiotic therapy that doctors are recommending to treat LD. I am one of them. I am taking a herbal protocol. I did not do well on the pharmaceutical antibiotic protocol so had to look to alternatives. I was too sick to tolerate them and they made me even sicker with side effects that almost killed me. There is no "one size fits all" when it comes to treating LD. I have also had much success with energy medicine. And, to say that vitamins and supplements are nonsense is absolutely ridiculous. Milk Thistle is wonderful to help the liver process. Although you do not believe that there are "toxins" in the body, you cannot deny that the body is overburdened with something and by eating properly and drinking lots of water you can eliminate feeling ill. Every chemical substance that we put in or near our bodies have to be processed and eliminated out of our body through the liver. Whether you want to call them neurotoxins, endotoxins, excitotoxins or what have you, the body cannot function appropriately with them inside of it and works hard to eliminate them. Detoxification is something that our bodies do naturally, every day and have to. We are assaulted with pollutants on a daily basis. Without this ability of our bodies to detox, we would die. We need to support the body in this function because many of us are too ill and our bodies do not perform as they should. Some people have an easier time with removing pollutants than others do. To look at this disease in a generic and simple manner does not help your readers and hinders them into denial, which is so prevalent with this disease as it is. It is much better to fight those doctors who want to take away long-term antibiotic use (IDSA) than to fight those doctors who are trying to support people like me who cannot tolerate the use of pharmaceuticals. Perhaps a more open minded approach to this disease is required in order to fully heal the mind, body and spirit...

You claim that some people are "unable" to handle antibiotic treatment for Lyme. You did not substantiate this claim,but I assume you either refer to antibiotic allergy or a Jarisch-Herxheimer reaction so severe that its detrimental effects outweigh the beneficial effects of the Lyme disease. This seems to be a contradictio in terminis, since such a severe herx is only to be expected with potentially lethal cases of late-stage Lyme, where basically any heroic type of antibiotic intervention is the only option to survive.

Allergy to Doxycycline is extremely rare and I strongly doubt that you are, but then there are alternatives such as Ceftriaxone and Claforan. It would be virtually impossible to be allergic to all of those, and I certainly do not think it statistically plausible that any significant number of Lyme patients are. If you have reliable data to show otherwise, I am interested. It appears you do not understand the Jarish-Herxheimer reaction and confuse it with "too sick to tolerate them".

As to your "there is no one size fits all when it comes to treating Lyme disease" is true, but not in the sense you imply, namely you imply that there are cases of chronic Lyme disease that can be cured without using antibiotics. Your statement is true, but only pertaining the type of antibiotics used, their dose and the duration of treatment, and certainly not in the sense of any type of treatment that does not include antibiotics.

The fact that you think that Lyme borreliosis can be cured without using antibiotics is a very dangerous denial of the fact that Lyme is a deadly disease that can not be cured without ressorting to often open-ended treatment with highly-dosed antibiotics. You think that neurosyphilis can be cured without antibiotics? It's a very similar infection. Just as serious, just as hard to cure, both warranting at least a year of antibiotic treatment.

"Energy medicine" is not medicine, it is nonsense. You are free to believe in magic, voodoo, homeopathy and sorcery but "energy" and "medicine" have little to do with eachother. Preaching "energy medicine" to people with a lethal brain infection is all possible kinds of bad.

Milk Thistle is superfluous for the "liver process". Our good Lord in Heaven/Evolution has provided us with a liver that has a gigantic over-capacity. Moreover, when chronically flooded with toxins, it significantly enlarges rather rapidly in order to handle even those. You are putting up a straw man. You assume the liver is inundated with toxins and that hence Milk Thistle would be helpful, whereas you have not proven the existence of any Lyme-related toxins yet - exactly the topic of my article - the fact that they have never been proven.

You appear to be overly worried about fictional or hypothetic toxins, but nowhere in your reaction I find the word "bacteria" or "spirochetes". They are proven, in contrast to any Lyme-toxins. And we know how to treat them: Not with "detoxifiers" or "energy medicine", but with antibiotics. Otherwise chances are that you'll die a drawn-out and tortuous death.

I don't know what you mean that I can't deny that "something" is burdening us and that by drinking lots of water we can avoid feeling ill. If you refer to Lyme disease, then this is a ridiculous statement. If you refer to people in general, then I can only say that I have a different experience so I do deny your claim.

You go on to claim that "our bodies do not peform as they should". I disagree. A person with Lyme disease is just a person with Lyme disease. Sick like a dog and the body performs as well as it can. There is no evidence that the Bb s.l. spirochetes significantly impair liver function, so there would be no need to assist the liver in "detoxing", as you call it. It appears you have no basic understanding of such "detoxing" (the Cytochrome system) otherwise you would not have used such over-simplification.

You go on to accuse me of pushing my readers into denial, and you indicate that you think that is because I'm rather naive in regard to Lyme disease. I suggest that you educate yourself a little on this disease and then form an opinion, instead of starting with an opinion and then ventilating it to sick people.

You suffer from magical thinking. You claim you "cannot tolerate the use of pharmaceuticals". That is complete and utter nonsense. There is nothing special about pharmaceuticals. If you cannot tolerate those, you can also not tolerate kitchen spices, tea and just about any food because everything on Earth is made of "chemicals". As to "mind, body and spirit" - the former and the latter are merely products of the brain. A healthy brain is fertile ground for a healthy mind and spirit.

Hi there, I certainly think everyone is entitled to their own opinion and I think it would benefit us all to be open to the idea that each person will heal and respond to treatment differently. I have worked hard, as have all of you to get to the root of the problem. I will just say that I did test deficient in one of the genes for level one detoxification. I believe that it is what caused my body to never fully eradicate a Lyme infection I had as a child. I wasn't sick all of my life, live an extremely healthy lifestyle, but metal exposure and then mild exposure pushed my body to the limit. Testing deficient for the detoxification gene was a huge piece of the puzzle and has allowed me make incredible strides by aiding this. Also, along with milk thistle has completely normalized my liver enzymes.

This is just my story.

You have the right to your own opinion, but you do not have the right to your own facts. There is no such thing as genes for "level one detoxification". If you have been sold a test for that, you have been conned. Millions of people went before you, getting "tested" by "naturopaths" for all kinds of things that either are a complete fiction, or irrelevant to their condition.

The reason Borrelia spirochetes are so difficult to eradicate is not lack of "detoxification". The reason is that Lyme disease is comparable to Syphilis. Similar pathogen, similarly hard to kill with antibiotics due to cyst-forming, DNA blebs/granules, intracellularity, efflux pumping, hypermotility, OSP-cloaking and immune factor modulation. Nowhere in this complex clinical picture play toxins a role. The whole "toxins" angle has been introduced by quacks looking for a simple buck, selling you tests and snake oil to "detox".

Lyme should finally be treated as the life-threatening bacterial infection it is. Neurosyphilis patients receive at least a year of antibiotic treatment. Lyme patients need even more. Ever hear about how "neurotoxins" make Syphilis so hard to cure? You won't hear that because it isn't true. It's the spirochete itself that evades treatment and the immune system.

I have the impression that none of the "toxin" believers is seriously ill or knows anything about the disease or its treatment, often preferring useless quackery to antibiotics. One has to wonder whether their diagnosis was correct in the first place.

A disease that can be cured with Milk Thistle and other "detoxifiers" is not Lyme disease. Lyme disease requires antibiotics until all symptoms of active infection have subsided.

Again, there is no evidence that there is such a thing as Lyme neurotoxins, and even if there were, it is unlikely that they would need "detoxifying".

I think Sarah is probably right. Read on LymeNetEurope for similar research. Thank you Sarah for telling it like it is.

I believed in the antibiotics but after 3 1/2 years of oral and iv antibiotics my wife has only gotten worse with chronic lyme so where do we go from there? david

Nearly all infectious disease specialists make the mistake of either prescribing antibiotics that do not sufficiently penetrate the blood-brain barrier, or not prescribing enough of it. You have to understand the terrible truth that Infectious disease specialists basically don't know what they're doing most of the time. Antibiotics are a taboo subject in medicine, almost. Apart from Lyme and Syphilis, there is little experience treating neurological infections and it seems that every doctor has his own ideas on how to treat them, instead of listening to microbiologists or successful LLMD's. Obviously, when the patient deteriorates over the years, the doctor is incompetent, since we're talking about bacteria here. There exist antibiotics that can at least reduce the bacterial load over time, when dosed appropriately.

Under-dosing or using the wrong antibiotic(s) is the only reason for antibiotic therapy to fail with chronic neuroborreliosis, and there are no other viable treatment options. Your only option is to get better antibiotic treatment.

Ceftriaxone for example does not penetrate the bbb. Neither does Amoxicillin, to give but an example. Most antibiotics do not. And even if the proper antibiotic treatment is prescribed, the doses are usually too low. 300 mg/day of Doxycycline for example will likely lead to ever worsening symtoms. A too low a tissue concentration of the right antibiotic is a slow death sentence for a Lyme patient.

The patient has to educate herself because having faith in the medical establishment is a deadly mistake.

You could post your wife's dosing schedule here and I will comment on it.

Just a quick google would suggest Ceftriaxone does penetrate the bbb. http://ncbi.nlm.nih.gov... for example (see the conclusion).

Do you have a source for that claim? I'm interested! Also I'd love to see the source for the Amox/Probenecid ineffectiveness if you have it handy. Thanks.

Sure.

About Amoxi/Probenecid causing treatment failure in Neuroborreliosis:

The pharmacological reason for this phenomenon is that by inhibiting the renal tubular secretion of Amoxicillin, simultaneous administration of Probenecid leads to elevated serum concentrations and to prolongation of the elimination halflife. In addition, Probenecid inhibits Amoxicillin transport out of the cerebrospinal fluid, so that when it is given simultaneously, the penetration of Amoxicillin into brain tissue (already poor) is still further diminished.

Lyme borreliosis
Robert B Nadelman, Gary P Wormser
Lancet 1998; 352: 55765

Department of Medicine, Division of Infectious Diseases, New York Medical College, and the Lyme Disease Diagnostic Center, Westchester Medical Center, Valhalla, NY, USA (R B Nadelman MD, G P Wormser MD)

http://cid.oxfordjournals.o...

"However, neuroborreliosis later developed in 5 patients, 4 of whom received the amoxicillin-probenecid regimen. The concomitant use of probenecid with amoxicillin may be inadvisable, because probenecid may impair penetration of β-lactam antibiotics into brain parenchyma [170, 229]."

About Ceftriaxone not passing the brain Parenchyma:

The study you link to confirms my assertion - Ceftriaxone only penetrates the bbb in case of bbb inflammation. The problem with most medical specialists is that they are not scientists like engineers or mathematicians. They are more comparable with bureaucrats or lawyers. They learn a bunch of facts but they do not understand the reasons behind them. Doctors think that because Ceftriaxone cures brain infections such as Meningitis, that it passes the blood-brain barrier. However, they do not understand that Cef only passes the bbb because the capillary vessels are inflamed. Without such inflammation, there is no bbb penetration, since Cef's molecule is not lipid-soluble plus < 500 Daltons (that is the simple explanation, there are exceptions such as micelles and cochleates).

Lyme neuroborreliosis as well as other neurospirochetoses often does not result in Meningitis. Meningitis is the inflamation of the capillary bloodvessels that form the blood-brain barrier. Meningitis degrades the structural integrity of these vessels, and an increased penetrability for larger molecules is the result. There often only occurs Lyme Meningitis in the acute untreated stage and as soon as antibiotics reach that area, the Meningitis subsides and Cef will not penetrate anymore, leaving the remaining bacteria unexposed. Bb s.l. is microaerophillic so it moves out of the Oxygen-rich parenchyma and nestles deeper in the brain, such as inside neurons. It has a great tropism for Myelin as well.

The below study shows that Ceftriaxone does not penetrate the bbb, except in the presence of Meningitis:

Zhonghua Nei Ke Za Zhi. 1989 Jun;28(6):340-2, 381.
[The penetration of cephalosporins across the blood-brain barrier and its clinical significance].
[Article in Chinese]
Zhang YY, Wu PJ, Zhang Q.
Abstract

"The penetration of Cefuroxime (CXM), Ceftazidime (CTZ), Cefotaxime (CTX), Ceftizoxime (CZX), and Ceftriaxone (CTRX) across the blood-brain barrier was studied in 119 patients with or without meningitis after an intravenous injection of 2 grams. Cephalosporins were undetectable or their concentrations very low in the cerebrospinal fluid (CSF), when there was no inflammation in the meninges. On the contrary, the mean CSF concentrations of cephalosporins were 2.21-5.36 micrograms/ml and the CSF/serum ratios 3.73-31.80% in acute stage of purulent meningitis."
PMID:2582913

Dr Ritchie Shoemaker faces charges from the Maryland Medical Board February 6th 2013
https://mbp.state.md.us...

Hi Lymegirl,

I am sorry to hear about your ordeal. It is a very good idea what you're doing, to try to educate yourself on this disease from as many varied sources possible. Do not give up hope - things do get much, much better but at first the improvement is very gradual. Provided you take the right abx at the right dose and right duration (usually permanently..) I went through a few years of horrifying, suicide-tempting experiences and frankly, if I ever will fall back to that level again, I have everything ready to kill myself (plastic bag and helium gas). With the full understanding of my husband. So I know how you feel!

1. About heavy metals leaving toxins in our bodies:

This is an inaccurate statement. Heavy metals ARE toxins, they do not "leave" toxins. Heavy mentals have no relationship to Lyme, so I assume you made this statement in order to argue that because there is such a thing as heavy-metal toxicity, that from that follows that there must also be such a thing as Lyme-toxicity.

That is ignoring the fact that heavy metals are toxins, but Borrelia burgdorferi sensu lato ("Bb"), the various bacterial strains that cause Lyme disease, are not toxins at all but sophisticated organisms.

There is indeed a THEORY that Bb produces "neurotoxins" but my article attempts to show that there is very little substance to this theory. In fact there exists no credible evidence for this theory at all. In fact, it is easily shown that the theory is incorrect. Look for example at the spirochetal load in the CNS after antibiotic treatment. It is minute. Even if Bb would produce neurotoxins (which never has been proven), the amount would not be sufficient to cause any symptoms of those, even if those "toxins" would be highly cumulative.

All the theory is good for is to move money from the pocket of the Lyme patient to the pocket of those who claim to believe in the theory, and who claim to have a way to get rid of the "toxins".

2. The only oral bbb-passing antibiotics I have (very extensive) experience with are doxycycline and minocycline, as well as Amoxicillin, which only passes the blood-brain-barrier in case of encephalopathy, often present in severe cases of Neuroborreliosis. None of these antibiotics has ever cure me, but I went from near-dead to quite able to function. More than 3-5 days of 6 g/day Amoxi did not seem to yield much more improvement (neither treatment duration nor dose), presumably due to the reduction of cappilary inflammation.

I need at least 400 mg/day of doxycycline not to rapidly deteriorate. Minocycline makes me feel much worse initially, but after a month of taking it, I see sustained improvement and then I continue with doxy.

3. I have never received IV treatment but there are many cases of failure, even after prolonged treatment. I keep this option as a last resort, esp. given the increased risks associated. If I ever get a blood/organ infection with my own antibiotic-resistant gut bacteria, I still have the option of Ceftriaxone in a hospital to prevent me from dying of septicemia. Ceftriaxone does not pass the blood-brain barrier anyway, so it is next to useless to treat Neuroborreliosis.

4. If your symptoms are caused by Neuroborreliosis, then you will likely only see very gradual improvement on oral antibiotics, detectable only on a month-by-month basis. Expect to need 5 years to feel really much better. Expect to be on them for life (I take highly-dosed orals since 1999). I am sceptical that IV abx. will make much of a difference, but there have been success stories so you could try (and please let us know the result here!) I would start with orals.

We are working on a possible cure for Lyme. It involves a method of enabling all types of antibiotics to be able to pass the blood-brain barrier and of extracellular antibiotics to be deposited intracellularly.

This work will take years. We have to produce the medicine (oral delivery), have tests done on rats (which I think is unethical so I hope we can move straight to clinical human trials - we already know it enters rat brains anyway but we would have to verify that our product does as well), test on myself, get a production licence, work together with doctors to allow experimental use, etc. But I will write an article one of these days, explaining exactly how this possible cure would work, complete with the patents and scientific research literature. Because this has already been proven inthe field (the bbb-passing part and the intracellular part, both in rats.)

Don't give up yet!

I have Multiple Chemical Sensitivity, grew up in a very wet area prone to black mold, around pulp mills, a vannuiin planband a whole lot of pesticide use. As for Shoemaker as his idea of vision issues - I know that every single time I go into town (I live far from other people by necessity) I cannot visually focus for at least a week (glasses on or off), and I have small spots in my vision and I fell very seriously sick with extreme high blood pressure (I get the high BO also from any use of solvents, spraying, too much traffic near our home, etc etc).

My point. I have no clue if Shoemakers methods work or not, but there ARE bloack mold and algae that produce dangerous neurotoxins. This is so well know because cattle die every year from algae blooms in their drinking water. These cattle deaths are very common here in Australia where rainwater is often caught for later use in artificial ponds (they call the "damns" for some reason) that are open to the sky..too much daylight and farmers have to truck in water and try to keep their thirsty cattle away from the water. Pestacides and many other agro chemicals are ALSO neurotoxins (it is how they kill). They do disturb the vision.

I would NOT however take the prescription (suppsedly inert - HA!) plastic they use to get it out of ones system. There are other far safer ways, and mine is not from byproducts of life...but from petrochemical byproducts.

I have an allergy to Doxycycline. My throat swells up and I have trouble swallowing my own saliva or breathing. Allergies to cyclines are FAR from rare. I had NO allergy to Doxycycline all before I was treated for ricketessia with it for several years (and flagyl, etc). Now the pinprick sores on my skin nerve endings are gone, as are those my wife had on her scalp....but I paid for this with no loner being able to use Doxycycline (or be in the room with it - I have had bad reactions just because my wife, who was being treated for a dental infection, fell asleep next to me with a pill in her mouth).

As for the idea that it is bunk that "some people cannot tolerate antibiotoc therapy"...you obviously are far less well read than you think. Do you know what a healing crisis (or herx reaction)? When an organism like lyme or other forms of rickettsia (in fact nearly everything killable by antibiotics) is dying, it sends off poisons into the body which the liver has to do its biochemical magic on to remove.

Your question as to why a parasite/disease organism would kill its host so rapidly with toxins shows that you do not understand how the body reacts to them. It is the body fighting them that does most of that.

IN the realm of the liver humans are not "one size fits". Some people lack the liver enzymes to get rid of organichlorines, and some can't get rid of the garbage that floods a person when Lyme is being killed off. Those toxins you do not believe are real, but every infectious disease doc knows are real - oh come on here - read a book on infectious disease. For petes sake, the toxins thrown off by the death of a harmful bacteria and/or virus is MOST of what makes you feel sick from the disease. Family doctors used to TELL their patients this when they felt sick, "its bad but it is a sign your body is fighting back".

A person with no immune system won't run a fever or produce any antibodies, or throw the bodies own army of specialty cells into high gear to help kill the thing. This is which is why some people are so hard to diagnose with Lyme - high infection rate with very few antibodies, due to a suppressed immune system (which is a common side effect of being infected with a stealth virus). Rickettsia also likes to HIDE. It is a stealth virus that hides out in the heart. It causes visible scaring of the heart on autopsy. It often causes people to have heart symptoms if they are badly infected (premature contractions are a common symptom as is tachycardia. My wife (at age 18) had premature atrial contractions, extreme bouts of tachycardia and angina. The heart doc put her onto nitro and other heart meds. The problem was the ricketsia, and he was like a carpenter who thinks that all problems can be solved with a hammer or a saw, or a plumber who tries to fix the wires in the wals with a pipe wrench).

When a person has had rickettsia/Lyme (other stuff does it too) for a long time, they often stop showing massive high titers on testing for the organism because most of the tests look for ANTIBODIES and they do not make them anymore. They need to have the virus in their body (which is hiding from the body, and suppressing the immune system) CLONED so it can be detected. Lots of these folk cannot afford more work for their liver to do. It is already overburdened by years of large scale warfare, flooding them with poisons from the death of all those nasties.

Pesticides are neurotoxins to insects, not to humans. Humans may die from them when they ingest an absolutely gigantic quantity (large spoonfuls of powder), and then of liver failure, not neurotoxicity.

It may be that algae and mold produce neurotoxins, but that is no evidence for the claim that Borrelia spirochetes produce the same (if that was your intention). An analogy: The fact that pedophiles exists does not make you one.

One really has to look deeply into the science, chemistry and research data on things. ("things" being claims by people making money on those claims.) And that has to be done for every single claim separately.

I never said that it was not true ("bunk") that some people can not tolerate certain antibiotics. Please do not use the "Straw Man" discussion trick.

You claim that there are many people who are allergic to a wide variety of antibiotics.
I have never heard of such a widespread multi-allergy to antibiotics mentioned in the medical literature, neither does it seem plausible. Instead, what is more likely is that every time a person with a CNS infection takes a bbb-penetrating antibiotic, that there is a severe Herx reaction, interpreted as "allergy".

Allergies are either caused by prolonged exposure in combination with genetic factors, or by a genetic deviation by itself. Allergies to Doxycycline and Ceftriaxone and Claforan simultaneously should be, due to their wildly different chemical structure, extremely rare. If 1% of people are allergic to Doxy and 1% to Ceftriaxone and 1% to Claforan, then only 1 in 1 million people is allergic to all three.

So I base my argument on the scientific literature and genetics, biochemistry and statistics. There is no mention of widespread multi-allergies to classes of antibiotics. If you say there is, the burden of proof is on the one making the claim: You. You just make a statement without substantiating it. If you wish to carry this further, we'll have to start quoting scientific articles instead of repeating opinions.

As to how narrowminded and uninformed I am: It is counterproductive to use insults. Use arguments based on facts. Leave your demagogy for the forums that promote Lyme-quackery.

Of course I know about the Jarish-Herxheimer reaction. If you would have read a little of my Lyme-related writings (such as my book on ALS), you would have known.

As to neurotoxins causing a Herxheimer reaction: First of all, this is only a theory. But if the theory is correct, according to that theory (and Wikipedia), it only happens once: When antibiotics are first initiated. And it is due to the body "not being able to remove the toxins fast enough". This implies that the body is able to remove neurotoxins all by itself, which contradicts your principal claim and supports the premise of my article.

It is not at all certain that it is (neuro)toxins that cause herxing. It may well be an immune response to the flood of bacterial fragments (antigens, pyrogens), or a combination of various factors.

Your anecdote on how doctors used to say that "toxins" make you feel sick is not substantiated by science. The immune system response has been proven to be extremely exaggerated when it comes to relatively small spirochetal loads, to give but an example. Severe inflammation is the consequence, and severe inflammation causes severe discomfort. I can back this up with references to scientific publications, but since it is you who made the claim of toxins, and not the immune response causing most of the feeling of illness, you should start with backing that up with more than a belief or a myth.

I removed the last two paragraphs of your response because they were off-topic and did not warrant a reply. I have refused publication of half a dozen long "debunkings" by you because they became increasingly incoherent, off-topic, abusive and unscientific, culminating in a promotion of "energy healing". If you have scientific evidence to your claims, please provide them. The article you quoted was already mentioned by me and I stated my opinion on it. Before attacking an opinion, first familiarize yourself with its supporting arguments.

I don't recall that she stated lyme isn't real, I think the potency of her arguments on her posts are to assert that it is real.

I don't recall that she stated lyme is in your mind (unless you are meaning "neurological", in that the bacteria are infecting the brain).

While what you say is true, if someone did that they would probably be in trouble, I don't see how your point is relevant whatsoever.

I like most of what your saying especially to all the de-tox quackary but I suspect your wrong about pesticides that fall into the class of neurotoxins. , best to my understanding (I'm no expert) humans and insects both conduct nerve impulses with the enzymes acetylcholinesterase and other cholinesterases. Which is exactly what organophosphates one of the more popular types of insecticides disrupt. The reasoning any PCO (pest control operator) would give you why they dont' hurt us is because of dose the insect get's a lot higher one for it's size than humans (in a scenario where they spray your house or yard) So logic would dictate if a human got a similar dose they would suffer "similar" severe neurological impairment and death.

http://en.wikipedia.org/wik...

http://en.wikipedia.org/wik...

You are right about the class of organophosphates.

Hundreds of thousands of suicides a year using them:

http://en.wikipedia.org/wik...

I think I would rather be eaten alive by a small shark but than maybe they know something I don't.

Dr. Schaller is a charlatan and deserves to be in jail. He has at least a half dozen aliases on Amazon where he praises his own books while accusing anyone who dare disagree with him of being seriously ill. He should be reported to the Florida parole board and his actions should be monitored. He would be banned from ever practicing medicine again within days.

Here is a link to a more recent version of my article on Lyme neuroborelliosis. Even if burprenorphine and ketamine are not treatment options for you, the sections of the article on inflammatory neurotoxicity and resultant immune system dysfunction should be of interest. https://yousendit.com/d...

Incidentally, although B.b. does not contain LPS, it does contain an LPS-like component. Please see article for references.

Sincerely,
Anthony

Anthony Murawski
Seattle, WA
Independent researcher

So, antibiotics didn't help you then? If Lyme totally ruined your life, you don't have a moral right to help others. Have success, helping yourself first. Then people will trust that you know what you're talking about. For now, you're just a very bitter woman, who failed her own treatment.

I have no idea why you reached that conclusion, but for clarity:

I ended up several times in the IC ward for serious heart rythm disturbances, combined with a straight 6 days and 6 nights no sleep whatsoever. They could find nothing and I was about to die, that 7th night.

Only because of heroic intervention of a 3rd party, who believed my hunch I needed antibiotics, I was saved - antibiotics were arranged that day. This saved my life.

I spent 3 months in bed, unable to go to the loo. I peed in a pan next to my bed. For three months. I lost a lot of muscle strength but after three months in bed I was able to sit in a chair most of the time and even walk a little. Going up stairs was still very hard.

It took years before my pulse in rest was below 120. It took years before I did not wet my bed anymore. It took years before the paralysis in my left hand improved so much that I could use it again for finer manipulations (such as picking up a French fry and bringing it to my mouth without dropping it).

Even years after starting antibiotics, lowering the dose lead to waking-apnea and other potentially lethal CNS problems. Collapsing in the street at night, not being able to get up for twenty minutes, that kind of thing.

Over the years, I learnt what dose I needed to be on and what abx. worked and which did not. Antibiotics brought me from balancing on the edge of death to being able to do a brisk ten mile walk.

I am extremely much better than around Christmas of the year 1999, when I thought I would not make it to the new Millenium.

However, I am still sick. I still have the typical Lyme rages occasionally. I still have severe problems concentrating (very debilitating for someone in my line of work). I still have inflammation everywhere: Joints but also ligaments (After I do that brisk 10 mile walk, _sometimes_ that will lead to half a year or two years of painful inflammation of my right foot).

I suffer from sometimes extreme insomnia, where I used to be able to fall asleep in half a minute - anywhere.

I am a shadow of what I used to be, health-wise (chronic fatigue has been with me since before 1999 and unless I force myself with all my might to do a physical thing, such as driving my car to the supermarket, it will not happen).

But I'm 99% better.

It's just that Lyme can make you so sick that being 99% better is still "very sick".

A person who can not sleep and who has arthritis neck to toe and who goes through life like a zombie (weak, fatigued and unable to concentrate nearly all of the time) is "very ill" in my book. However, I thank the good lord on my bare knees I made it to this stage. I haven't been in constant fear of dying anymore for a long time.

As for me having "no moral right" to help people: Please read the comments on my MS- and ALS articles. Several people who are very ill, misdiagnosed with MS or ALS, got the idea to get Lyme tested because of my articles and they were ragingly positive on every test they took - for active infection. I've helped saving a few lifes here & there. Every life saved counts.

Now, before you "diss" me, know that I'm neither a medical doctor nor a scientist of any sort. And, I have been trying to understand your points, tho I've been skimming all this and may have missed something.

OK. So, you believe in the Jarisch-Herxheimer reaction, but don't believe the reaction, when discovered with syphilis, was due to toxins, but rather to the spirochetes actively fleeing the antibiotics, which of course, were trying to kill them? And the same with Lyme? OK, fine. But I find fault with your insistence that any LLMD who has shared the "toxic spirochete die-off" story with their patients as a total quack. Some of these docs are very sincere and hard-working, and do their best to keep up with the latest research. My extended family has personally dealt with more than a half dozen LLMDs, and most talk "detox" at some point, and no, most aren't making any extra $ off of their patients trying various "detox" products. I think you're the one who comes on a tad strong with your accusations in this regard.

Milk thistle. Long before one family member even knew anything about Lyme, let alone that they had it, they dealt with chronic back pain, a slipped disc, and eventually, 2 major surgeries. The various meds he was on for his pain caused an enlarged liver. The doc knew nothing to do for this condition, but watched his liver closely and tested the liver function several times a year. Finally, after several years of this, the advice of another family member to "take mild thistle" was listened to, and the very next time the liver was tested, the results came back normal. The patient, who had been dealing with some physical discomfort from the enlarged liver, was fully aware of the physical change that occurred AFTER he began taking milk thistle. Perhaps this is merely coincidence, and the liver improved all on its own.

There are supplements that patients take for which they have no direct knowledge if it does them any good or not. Other supplements, however, some people CAN tell a difference. I can tell a notable difference in my energy level when I take a certain brand of D3. My son has an increase in his joint aches and pains from TBDs when he stops the supplements with anti-inflammatory properties, such as curcumin. Coincidence? Perhaps.

Pro-biotics--of no use? Really? How does one explain the child who gets diarrhea from certain antibiotics when not taking a pro-biotic, but has no gastro-intestinal problems when they do take a pro-biotic? Do you think digestive enzymes are quackery too? What about B12 injections to counter the acid-reducers main-stream docs love to put gastro patients on? I think I have trouble telling what standard practices you like/dislike vs. less standard protocols you agree/disagree with, other than that long-term antibiotics ARE necessary in Lyme treatment.

I guess my concern with your views is that they seem to have their own degree of over-simplicity. For one thing, few Lymies are without a co-infection, such as Babesia or Bartonella. It makes sense that the addition of other TBDs could, and would, complicate things, making the "cure" that much more difficult. When someone, say on IV for multiple months, shows no improvement, the problem is with some aspect of the amount of med and the duration of med, and their doc must be stupid? I mean, that's what I think I hear you saying. If all that is needed is the right combination of antibiotics for the right amount of time and my loved one can be cured, then please tell us what that is! Don't hold back! or perhaps one size doesn't fit all, afterall?? And just to make things more fun, let's throw severe Crohn's Disease into the mix. Now what is the patient to do? For one thing, he can't tolerate swallowing all those horse-pill money-wasting supplements without them coming right back up, along with his breakfast and lunch, so we'll obviously save some money on supplements. But, seriously, I am seriously and honestly asking you. You come down very hard on anyone who claims success from the things you debunk, so please do tell us the definitive answer. You seem to "dis" standard medicine in regard to the IDSA denial of chronic Lyme and the need for long-term antibiotics, but then "dis" the "holistic" community for keeping the health food stores in business. I find this a tad contradictory. You want evidence and specific scientific data from anyone who disagrees with you, but I don't see that you have all the answers either, so please do enlighten us further. thank you.

1. I never claimed supplements are useless in general. At least I did not mean to say that. I think that is clear from the context. Of course supplements can be very useful, to supplement a deficiency for example. That's the very definition of "supplement".

What I meant is that supplements are useless to significantly make a dent in Lyme disease, that's all. People put too much faith in them and spend too much money on them. The mistaken belief that supplements can make Lyme much better leads to the disease taken less seriously amongst doctors and microbiologists, who only have patent's words to guide them as to the severity of the disease.

When a Lyme patient tells their doctor that supplement X "greatly helped", the doctor will think that Chronic Lyme disease is all in the head. Because brain infections are not affected by supplements, and the doctor knows that.

2. I never claimed that all quacks are by definition malicious. "Quackery" implies practicing treatments that have no basis in science, logic or experience. Quackery remains quackery when its practitioner acts in good faith. It is hard to believe in the good faith of people with a medical degree who charge very high fees to administer treatments without any evidence that it helps, though.

I offered many arguments why I consider "Lyme neurotoxins detoxing" to be quackery. Firstly, there is no evidence that Lyme neurotoxins exist. I did not even touch upon the fact that neither is there any study documenting the efficacy of "Lyme neurotoxin detoxing".

3. Probiotics and antibiotics: There is a big misunderstanding about how probiotics should be used (and when they work and will not work) in relation to restoring healthy gut flora.

Broad spectrum antibiotics destroy the gut flora just the same as they destroy probiotic supplements. If you have evidence that probiotic bacteria in supplements have been made multi-drug resistant by their manufacturers then please notify the Dept. of Homeland Security because this would constitute a very serious criminal offense and would be a big step towards bioterrorism, because bacteria engage in "gene swapping" and hence the mere mixing of such probiotic strains with for example a garden-variety Anthrax can result in "military grade" multi-drug resistant Anthrax, only needing micropulverisation and electrostatic charging to be able to be used to exterminate the planet. Anyone producing antibiotic-resistant bacteria of any kind will be hunted down til the end of the world. If you want to get arrested, try doing something like that. So just forget about that theory of yours. Probiotic supplements are utterly useless when on antibiotics, period.

The truth is that probiotic supplements will immediately be killed when you still have bactericidal serum levels of antibiotics in your tissues. So it's useless to take them while you're still on antibiotics. And even if you have merely bacteriostatic levels of abx: The probiotic spores won't germinate and be flushed out, since they are embedded in the feces. When they can't germinate, they can't attach to the mucosal layer.

The half-time of an antibiotic such as Doxycycline is so long that when sufficient is administered to suppress Lyme disease. 24 hours after taking a dose you still have bacteriostatic tissue levels. So it does not make any sense to take probiotics.

Probiotic supplements are only useful to re-populate the intestines AFTER a course with antibiotics. Not DURING a course. Of course, the probiotics mafia doesn't want you to know that, because they like money. Most probiotic supplements are a scam anyway, and I can prove it - but that's for another article.

4. You say you have neither a medical not scientific background, yet you accuse me of over-simplicity, while I spent most of the past 15 years of my life digging deep into the medical literature pertaining chronic bacterial infections. Whereas your ideas about probiotics while on antibiotics testify, you do not understand the basics about bacteria and antibiotics.

I appreciate your sympathy for the self-appointed LLMD's, but fact is that most of them are just filling a niche and out for money. Not even Joe Burrascano really knew what he was doing, as I have demonstrated using a Lancet article that confirmed my objections to him recommending Amoxicillin + Probenecid against Neuroborreliosis. I had that objection before that article came out, and I can prove through my email correspondence with a LLMD, 12 or 13 years ago. (The Probenecid interfering with the passing of Amoxi through the bbb, leading to documented treatment failure, esp. bec. Amoxi already can only pass the bbb in case of Encephalitis bec. its molecule is > 500 Daltons).

You accuse me of simplicity. However I am familiar with the work of relevant microbiologists such as Miklossy, Grier and Brorson. Whereas you don't even understand basic pharmacokinetics.

As to your claim of LLMD's not making an extra buck selling "detox" products or being an affiliate for them: Some do make a lot of money that way (Burrascano, arguably the #1 revered LLMD of all time has been repeatedly accused by his patients to push expensive supplement he stocked in his practice) and some only recommend them to give the patient some hope. There is not much, if anything, a LLMD can do, besides prescribing antibiotics. Making the patient come back for advice on supplements at least generates revenue.

Hi Sarah, I'm not sure you'll see this since the article is a few years old and I don't know how else to contact you. But from what I understand as of now this neurotoxin still hasn't been found and you are correct. One question that I do have is I did read that Lyme will take Cysteine from its host. If this is in fact true would it not be beneficial to take Liposomal Glutathione or Glutathione precursors to keep your bodies immune/detox systems functioning at its normal level? Also, would those things be beneficial from reducing Quinolinic Acid as well? I do personally notice a difference when taking these products. I could probably ask you a few more questions but that is primarily what I am interested in knowing. Thank you.

Hi Jade,

Could you give me a reference of the scientific publication where it is mentioned that B.b. s.l. needs host Cysteine to survive? "Detox systems" are just your liver and kidneys and they can not kill Lyme bacteria.

You're making all kinds of assumptions. Bb passively absorbs a vanishingly small qty of Cysteine in the order or trillions of times less than your body uses every day. No effect on "detox systems".

Sarah, based on reading more of the comments here I am curious. What antibiotics should I ask my doctor about that would pass the BBB without current meningitis? It looks like I have had meningitis twice, it was written off as viral by ER docs and I was sent home without a tap, but I think it was likely related to Lyme. My doc had me on 400 mg of Doxy. But right now I am on that Amox/Probencid combo. It feels like it has helped some of the symptoms like fatigue, muscle aches, weakness. But brainwise nothing spectacular. Based on the research that makes sense.

Also, what are you thoughts on the Elispot testing? Its my only positive test. I've seen some evidence in late stage neuro Lyme it might be relevant. LLMD said with symptoms it is. Neuro said she cannot say whether it is past or present infection based on that.

In The Lancet appeared an article where they found that Amoxi+Probenecid causes widespread treatment failure because the two substances compete for entry through the bbb.

400 mg doxy/day is too little when you're an adult of normal weight. 400 mg Minocycline/day is a good dose but Doxy needs 600 mg/day to be effective against Neuroborreliosis.

I can't comment on the rest. The above is not medical advice but the opinion of a layperson.

Definitely not looking for medical advice just what you've seen in studies that I might have missed. Thanks.

Hello, Sarah I have a question I am hoping you can help me with. I have had severe neuroborreliosis for about 3 to 5 years now. A few months ago I stopped taking my antibiotics due to rapid weight gain. There had been no changes in my eating habits or physical activity. I write down everything I eat and get at the most 1000 calories a day. (due to lack of appetite) I stopped gaining after going off of antibiotics but I think I had gained about 30 lbs in 3 months on antibiotics. I am so confused. I had been able to keep a steady weight (Well, I had actually lot some before treatment) for years now and am honestly frightened by the unexplained weight gain. Do you have any idea what could cause this? I think my doctor is just at a loss. She has no idea either.

1. To stop taking abx when you have neuroborreliosis is suicide and will set you back years, if you stop taking them for months. I die when I don't take them for three months. I'd be dead by now from my autonomous system breaking down, me stopping to breathe. I had problems with that before (and incontinence and 100 more problems like that). If you have severe neuro-Lyme, you're now very much deteriorated. Severe neuro-Lyme kills in months. Doctors call it "rapid progressing MS" or "late-stage ALS".

2. If you won't tell me WHAT abx you're talking about, it becomes impossible to say much useful (such as whether weight gain is a known side effect of that abx.) You think all abx are the same?

3. I gained 45 lbs while on abx. I think it had nothing to do with the abx but with my inactivity. I lost it all, and more, using alternate day fasting with 500 kCal on "fasting" days and very low carbs on "feasting" days.

4. If it's energy from food you gained weight with (and you gained fat instead of oedema), the abx. raised your appetite and/or decreased your metabolism and/or made you lethargic. If it's water retention, the abx. caused that. Should be easy to verify.

I've had classic Lyme since 1970. Got it in Santa Rosa CA while hiking. Sixty miles north of San Francisco. Had the Bull's eye rash and have been suffering ever since. NO ANTIBIOTICS KILL IT. I have tried. The antibiotic that will kill it has not been discovered yet. It needs to be proven in a lab that an antibiotic will kill it. Spirochetes are similar to Syphilis. WE NEED A NEW ANTIBIOTIC PLEASE.

They take them on alright, for the money.

I've had the disease since 1970 and have tried every single herb on the market and am here to report NONE OF THEM WORK. NONE. Have spent thousands. SAVE YOUR MONEY.

At this point in time there is "no one size fits any." This is as yet no cure. NO CURE. FACE FACTS. A cure must be discovered. Something that kills the Lyme bacteria in the lab. PROVEN. Like Syphilis.

It is true you need pain fillers for the bone pain. Pain killers the FEDS are taking off the market now. So there will be little relief. The only other way to deal with it is exercise as hard and as long as you can. Even if you sweat really bad, and sleep four hours after. It loosens the bones up and makes the pain more bearable. I did this for fifteen years. Now I am getting off the pain meds because you cannot take them forever. Your stomach will eventually rebel. That is where I am now.

You are very brave. I am glad you are sharing.

They found a cure for AIDS. They can find a cure for LYME.

Isn't Glutathione the new product Suzanne Somers is pushing?

Cat's claw does not work. The only probiotics that work are the refrigerated cups at Whole Foods or other health food store. They come in several flavors. The pills are bogus. Greek Yogurt unpasteurized from the health food store works also. The head of the probiotic department clued me in.

You need the probiotics while doing antibiotics. Otherwise your will get yeast and your stomach will get raw feeling. Forget pills, they don't work, Get the cups or Greek unpasteurized yogurt from health food store. It works. You will see.

Probiotics are a waste of money when you're still taking antibiotics because the antibiotics kill 100% of the probiotics. In addition, healthy gut flora consists of many different organisms and strains and probiotics contain only a tiny subset, only those that are easy to grow in a fermentation tank.

Eventually your gut flora becomes resistant against the abx you take. This took three years to happen with me. Bb s.l. itself seems not to ever get resistant, but enormous doses of Tetracycline-family abx are required (lethal doses for a person, basically).

This is wholly incorrect because the antibiotics kill 100% of the probiotics. What you need is, when on combo's, to take antifungals. But when on Doxy, you won't likely kill off sufficient gut flora to be in danger of a fungal takeover. I speak as someone who'se been for the past 15 years on various abx. combo's, had fungal infection nearly kill me for YEARS, had 70 grams worth of PLD118 synthesized for 50 grand to safe my life and that of another person, studied the effect of abx. on gut flora, read all the medical literature, etc.

Not in the lab (in vitro). In vivo - in patients.

Sure:

The below study shows that Ceftriaxone does not penetrate the bbb, except in the presence of Meningitis:

Zhonghua Nei Ke Za Zhi. 1989 Jun;28(6):340-2, 381.

[The penetration of cephalosporins across the blood-brain barrier and its clinical significance].

[Article in Chinese]

Zhang YY, Wu PJ, Zhang Q.

Abstract

“The penetration of Cefuroxime (CXM), Ceftazidime (CTZ), Cefotaxime (CTX), Ceftizoxime (CZX), and Ceftriaxone (CTRX) across the blood-brain barrier was studied in 119 patients with or without meningitis after an intravenous injection of 2 grams. Cephalosporins were undetectable or their concentrations very low in the cerebrospinal fluid (CSF), when there was no inflammation in the meninges. On the contrary, the mean CSF concentrations of cephalosporins were 2.21-5.36 micrograms/ml and the CSF/serum ratios 3.73-31.80% in acute stage of purulent meningitis.”

I am about to treat longterm neuroborelliosis with Bartonella co-infection. I have been through the land of supplements and detoxing myths. However, I have seen great testimonials using energy medicine to supplement treatment with antibiotics. However, this post is about my plan anti-biotic wise, and if it works I will let you know.

IV Rocephin (bypasses the liver and kills the spirochete-check. I have encephalopoathy and psychosis, so this will help)

IV Flagyl-- http://jac.oxfordjournals.o... Flagyl and Tindazole cross into the CFS.

Eventually add in IV minocyline and rifampin for bartonella, possibly rotating with iv zithromax and levaquin---to kill not only bartonella but by hitting lyme as many ways as possible.

SUPPLEMENTED with energy medicine to aid in treatment. Ondamed was FDA approved, however, I have seen ANECDOTAL testimonals using a machine called a "pulsed plasma" machine from a company called pulsed technologies. Keep in mind when I link the anecdotal evidence, it is in regard to my situation, pure neuropsychiatric Lyme: https://youtube.com/wat...

I believe if my insurance covers this (not the supplemental energy medicine; however, for IV, laws no require insurers to cover long term antibiotics--MA is where I'm at) and I continue for at least 2-3 years, there should be SOME improvement.

I await for the miscelles. I will be alive by then I'm sure. I'm 21.

Dear Sarah, it is in an article you posted and suggested.

//owndoc.com/pdf/L...

It does not say that Lyme does this. It says that your immune system, when presented with lysed bacteria in the CNS, triggers inflammation, that inflammation causes Tryptophan metabolisation, and some of the metabolites are neurotoxic in large amounts. So, normal Tryptophan metabolism also produces those same neurotoxins, but in case of a "Herx", there is excessive Tryptophan depletion due to the inflammatory immune response, and that excess causes more CNS damage (manifesting as the "Herx".)

All in all interesting data, because it shows we can alleviate our sx. by supplementing with Tryptophan and taking Ketamine. I thank you for pointing that out because I was not aware of this. But it's not that Bb s.l. turns Tryptophan into a neurotoxin. Ordinary Tryptophan metabolism is sped up by immune-system mediated inflammation as a response to dead Bb fragments, and the excessive volume of metabolites of that normal metabolic process causes a degree of neurotoxicity.

There AFAIK is no evidence that Lyme bacteria produce neurotoxins in vivo or in vitro. Its a very profitable myth, hyped by the "detox" peddlers.

Cholestyramine is indeed bad stuff. Don't use it. Chlorella algae, used in its place in the protocol is extremely effective, as well as having nutritional benefits as a side effect.

Genes for detoxification? If you have mutations to the set of genes that regulate the building of methylation enzymes (MTHFR genes), you may very well be lacking in detoxification ability for genetic reasons.

I agree... I started oxy in 2013 when I could no longer exist in the pain I was in... but I suffered for many many years w/o it. I want to be able to take cannabinoid oil for pain management, but it is so expensive that I have stayed on my pain meds instead, b/c at least that is covered my by insurance. I think anyone who gets to stage 3 Lyme is pretty much screwed unless the medical community & the FDA stops treating this like it is a mythical disease... we need a cure, relief from pain, and improved cognitive medicines... but I fear, we will all die before they ever get to this point... Even freaking AIDS has a medical protocol that can make a person pretty much live out the rest of their natural life, several cancers can be cured.. but Lyme, it looks like unless the doctors themselves get sick with it... will never get a cure. Like I said... this is our governments way of population control, and there are a lot of people who are sick with it not just in the USA.

Apparently, your Lyme Disease has kept you from reading that she was bit. She did contract Lyme Disease, and still suffers. I am not saying this to be mean... Lyme affects your brain... it can also make you more angry than necessary to situations. You don't have to call her names. You may want to consider that Lyme Disease has affected you in this way... you can take prescriptions to maintain your level headedness, but it doesn't always work.

This is for topical use ONLY do NOT ingest

Have a friend ship you a 1/4 oz or so from a legal state. sealed with a kitchen grade sealer and packed in actual popcorn. put about 4 ozs of isopropyl in the freezer over night (the highest concentration possible) drop enough dope in to just be covered shake for about a minute put back in the freezer for an hour and repeat 3 times.

strain with a metal coffee filter. repeat with the same dope and combine the two batches. Do a final strain through cheese cloth. You now have green dragon (non ingestible)

Cook down either using a double boiler on an ELECTRIC STOVE (no open flames) and fans (keep the water just below boiling) or use an induction cooker and an oil bath the trick is to keep the alc at over 173 degrees but not go over 212 so that you over decarboxylate.

You will have around 6 or 7 ozs of alch from the 8 ozs you used no matter how hard you squeezed your cheese cloth on the final strain and want to cook it down to about an oz or so. Near the end stir with a wooden implement until the little bubbles slow down.

Now batch with hemp oil (available from retailers on line) and shea butter (also available on line from retailers) about in equal measures. Bottle up in blue or brown glass (plastic if you can find them) spray bottles or for hard to get at areas roll on bottles. Shake the bottles before each use. Store the non active bottles in the fridge. This will last you about 3 to 6 months depending on how many areas you need to treat.

Be aware this will stain because the chlorophyll will be extracted somewhat (this is why you need the highest % alch and do the freezing routine to prevent as much transfer as possible)

You spray or roll it on the affected areas. It will NOT get you high at all, but it will make over the counter meds such as aspirin acetaminophen and ibuprofen super charged. (hint alternate but use aspirin once per day to prevent heat attacks)

What this costs you you will more than make up for in savings on laxatives as you can now save the oxy for emergencies.

While water curing the dope first would eliminate most of the chlorophyll it also eliminates some of the Cannabinoids which you need for pain management.

If you are trying to treat all over pain employ the exact same method except using either Graves or ever clear (local liquor store) and an 8th oz. batch with lecithin powder around a teaspoon per oz of finished liquid and virgin coconut oil (NOT the stuff that stays liquid) heat it gently to it’s melting point in a hot water bath before you combine. Use dropper bottles instead of spray. Start with a half dropper full held under the tongue as long as you can stand it (hopping up and down and flapping your arms helps) Keep in the fridge. Heat in a warm water bath before using and shake the crap out of it. This will show no effect for 30 mins to 90 minutes and will then last around 6 hours and will definitely get you high so use only at night when you don’t need to be anywhere and hide the phone so you don’t call any old boy/girl/any friends. An 8th will make enough to last you about 1 to 2 months at 1 full dropper per day and will also super charge OC pain meds.

Randal, you are a horrible individual. It's sad to see people like you trolling the internet, attacking people like Sarah for your own pleasure. just terrible