“Lyme neurotoxin detoxing” is dangerous quackery
Some self-anointed LLMD’s (Lyme-Literate Medical Doctors) have jumped on the bandwagon of “chronic Borrelia neurotoxins” and are insisting on the need to “detoxify” them. Since there exists no solid evidence for the existence of such toxins, their treatment guidelines of even those I give the benefit of the doubt contain weasel words such as “it is supposed that”, “could be present”, “may be found”, “has been proposed” etc.
The myth started with patent application nr. 6667038 by Sam Donta and Mark Cartwright.
In it, they claim ownership to any diagnostic/treatment process based on their discovery of a coding sequence in the Bb genome for a toxin they say is similar to Botulin C2 toxin, calling it BbTox1, as if it really has been proven to exist. However, the long patent application never mentions any actual discovery of the alleged toxin, neither in vivo nor in vitro. The mere presence of genes is no guarantee in the slightest for the actual expression of those genes, so their patent is a great leap of faith, a gamble, an investment in the hope that who knows, perhaps some day someone will find significant levels of an actual toxin, expressed by the code discovered in the Bb cDNA. In fact, all the patent does is secure that the discoverers of the sequence will receive royalties if anyone ever does something pertaining to it. However not even after decades of searching, this elusive Borrelia toxin has never been found. Could it be that due to the winding ways of the Good Lord’s evolution, that there is all kinds of ancient unexpressed DNA in just about any genome more complex than a simple virus? Lyme neurotoxins are nothing but conjecture, but a veritable cottage industry has been built around it, with a few players raking in the big dough with their dubious “Lyme detoxing protocols”.
Until the existence of Lyme neurotoxins is proven (it shouldn’t be so hard to find them in a culture broth), we should not risk what remains of our health and spend time, effort and money on trying to “detox” them, because the “detoxifiers” and “toxin binders” such as Cholestyramine (Questran) have never proven their value in any randomized, double-blind, placebo-controlled, peer-reviewed, reproducible trial but they do have very serious potential side effects, including cancer. Those binders bind important nutrients as well, weakening the immune system. “Detoxing” (AKA the ethereal “body cleansing”) distracts from the real issue: How to kill the Lyme spirochetes more effectively and how to prevent an extreme immune response to the Bb bacteria/dieoff damaging our tissues. Lymeland still has trouble being taken seriously and the last thing we need is more bunk to muddy the waters. The big issues impeding a speedy resolution of symptoms under treatment are antibiotic resistance, bacterial persistence and excessive immune reactions to relatively low bacterial loads. We don’t need one more excuse to deny antibiotic treatment and blame persisting symptoms on “chronic neurotoxins”. Neuro-Lyme patients need open-ended antibiotic treatment with high doses of appropriate antibiotic combo’s. Any attempt to distract from this fact – especially in a wholly unscientific, vulgarly commercialized manner – is greatly detrimental to our cause. When LLMD’s continue to write books and spam websites, evangelizing their “Lyme detox protocols”, eventually, ordinary doctors will take the disease even less seriously and will focus less on long-term antibiotic treatment and more on unproven “detoxing”.
As to those elusive “fat soluble Lyme toxins” , I can’t put it more consise than this mother of a son with chronic Neuroborreliosis:
Fascinating…….but for the fact that B. burgdorferi does not produce any toxins.
No neurotoxins. No cytotoxins. No hemolysins. No enterotoxins. No endotoxins. No exotoxins. No exfoliative toxins.
No classical bacterial toxin. Period.
The closest anyone has come to seeing any toxin activity with B. burgdorferi was some test tube hemolysis back in 1992. And that turned out to be wrong as two guys at Wesleyan showed in 2000 (J Bacteriol. 2000 Dec;182(23):6791-7).
But why believe an online stranger. Ask Burrascano or Shoemaker. Ask them a couple of very fundamental questions such as….
What’s the molecular weight of this toxin?
Is it plasmid-encoded?
If it’s plasmid-encoded do all strains carry this plasmid and produce a toxin?
Is it a protein or a glycoprotein?
What’s its receptor?
Is it released or membrane-bound?
Has anyone produced commercial antibody to it?
Has it been sequenced (like the burgdorferi genome) and can I look it up in GenBank?
If it plays a role in pathogenesis, why hasn’t it been attenuated for use as a vaccine candidate?
So are there really no neurotoxins to worry about?
Borrelia has never been proven to produce any kind of toxin, but Lyme infection may indirectly cause a harmful increase of certain brain chemistry products. Particularly QUIN, Quinolinic acid. A fellow Lyme sufferer and attorney named Anthony Murawski has done extensive medical literature research into this phenomenon, and has published a preliminary paper on this, which we mirrored here:
Suffice to say that no currently peddled “Lyme detox regimen” addresses this possible issue. I’ll write a separate article about the possible implications of his findings. He remarks that Lyme patients have a severe Tryptophan deficiency in their brains, and so have MS sufferers and other folks with life-threatening CNS syndromes of officially unknown etiology.
I think most high-profile, top-dollar “LLMD’s” are charlatans. The more they talk about dozens of highly complex issues surrounding Lyme disease, the more they’re deliberately obfuscating the issue, making you think the problem is so difficult that you really need to be under their expensive long-term guidance. Lyme is caused by an antibiotic-resistant, immune system-evading bacterium that causes a hell of an inflammatory immune response. That’s all there is to it. It does not produce neurotoxins or form biofilms. Lyme-induced autoimmunity is a chimera. And as long as you lead a healthy lifestyle, you do not need to be on a cornucopia of supplements to recover. All you need to do is live healthily and be on the proper long-term antibiotic combination/pulse therapy – including cyst-busters, if they ever find one that actually works in vivo. That’s all you can do to slowly improve. Minocycline with hydroxychloroquine or just plain Doxy alternated with a week of Amoxi on bad encephalitis days, that’s about all there is to it. For as many years as it takes. No outlandish, complex “protocols” such as the Marshall protocol have shown credible merit. The MP in fact promotes antibiotic resistance, although there seems to be little danger for that, with Bb. The little buggers are resistant enough to begin with, mind you. No miracle mineral supplement, “detoxer” or “zapper” helps one iota against Lyme disease, whatever patients, practitioners or pushers may preach. Neither does colloidal silver do much – Tom Grier did extensive research into that.
High-profile “LLMD’s” promoting the idea of neurotoxins:
Mr. Schaller believes that commercially available “Rife machines” kill Bb spirochetes, albeit not sufficiently. He is on the record for claiming, in writing, on his own website, that Lyme patients need no more than 8 hours of sleep, even when they are desperate to get more. He even prescribes stimulants to keep them awake! He claims that no adult – sick or healthy – needs more than eight hours of sleep, and that sleeping more “just makes one prone to get fired”. Of course, few things are more damaging to the immune system than to deprive a sick person of necessary sleep.. He endorses the books of the notorious “Lyme-cure” scam artist and obnoxious forum spammer Bryan Rosner. Schaller exclaimed in an outrageous, all-caps, expletive-filled rant that a reader who gave his Lyme-treatment book a well-argued negative review on Amazon must be mentally impaired due to Bartonella infection. Nota bene: He promises Lyme treatments leading to a “full cure”. He minimizes the neurological effects of Neuroborreliosis and blames them on Bartonella – a relatively minor infection with mild symptoms that usually resolve without treatment – instead. Schaller sells “full cures” for a variety of other serious illnesses such as depression on his sites. However, his books do not offer any concrete help, according to several reviewers.
Dr. Schaller was arrested in 2011 for assault with a deadly weapon and was found guilty in court and convicted to four years probation. We added this information because of his recent legal threats and rants against us which may escalate into criminal threats, violating the terms of his probation. We would be delighted seeing him in jail, where he belongs.
Dr. Schaller is alleged to charge 575 dollars for a phone consultation of 20 minutes. Reportedly, he routinely lets patients sign non-disclosure and non-litigation agreements. Update: Mr. Schaller emailed us, stating that he often charges much more than $575 for a phone consultation. Buyer beware.
Dr. Shoemaker believes you can have living Borrelia bacteria in your central nervous system that “do no harm whatsoever” and should “just be ignored”!
(after the 3-minute mark)
This outrageous statement alone is the highest form of treason to Lyme patients. When even the “LLMD’s” say that active infection with living, multiplying, T-cell-invading, Myelin-eating spirochetes is often “harmless”, what hope do Lymies have to receive long-term antibiotic treatment? Mr. Shoemaker claims that if he diagnoses you with blurry vision on his VCS test (“Visual Contrast Sensitivity”), that this is almost always caused by “chronic neurotoxins caused by infection”, and that his “detoxing” can in 90% of cases greatly help you. Shoemaker further says that when his Lyme treatments don’t work, that it must be due to “mold exposure”, and that “almost everyone with Lyme is exposed to mold”. My advice as a self-treating, 90% recovered chronic Lyme neuroborreliosis patient to Dr. Shoemaker is to lay off the cookies and cigarettes and take a very long hike – perhaps that’ll “detoxify” him. Update: Shoemaker has been sued for malpractice. This does not mean that he is necessarily guilty of that though – legitimate LLMD’s have been prosecuted and persecuted too. Update: On February 11, 2012, Ritchie Shoemaker was reprimanded for malpractice. This doesn’t necessarily mean anything though, since MD’s have been routinely punished for doing good work. However in Shoemaker’s case he deserved it, and more.
There are numerous Internet marketers posing as “Lyme experts” poised to take a piece of the “Lyme neurotoxin” pie, selling eBooks packed with incredible nonsense and quackery, targeted towards the naive reader. One of the most active is Connie Strasheim AKA Conniekillbug AKA Connie Killabugger, peddling eBooks with no answers. Such books make a mockery of Lyme disease and us Lyme sufferers. Schaller, Rosner and Strasheim work as a team, incestuously glorifying eachother’s bogus “Lyme protocols”. It would be good if they spend more on medical literature research and less on refined psychological sales tricks.
Then what causes the “Herx”?
Lyme supplement-sellers spread the simplistic idea that when a Lyme patient takes antibiotics, that some bacteria die and release neurotoxins that make you feel bad. The reason the quacks made up this story is because it creates a profitable market for “detoxing” products. What really goes on in the brain when you take antibiotics?
1. Spirochetes are extremely motile. They can move great distances through the brain in a short time, and they can “drill” through brain matter like a hot knife through butter. And that is exactly what they do when they sense that their structural integrity is being compromised by the action of the antibiotics. They will randomly move around until they find a location where they may survive. It’s a simple evolutionary adaptation to help escape unfavorable environments. Of course, having those spirochetes frantically drilling holes through your neurons causes neurological discomfort. These processes are known scientific facts.
2. Some spirochetes die, and their fragments enter the bloodstream where they trigger an immune response. Antibodies that pass the blood-brain barrier will enter the brain parenchyma and bind to the Bb s.l. Lyme spirochetes. Others activate glial cells. The immune system’s lysing actions (the cell-localized release of strong oxidants) cause collateral damage to surrounding neuronal cells. These processes are known scientific facts.
3. Some chemical components of the Bb cytoplasm may cause damage to neuronal cells, when the spirochetes die. If this happens – and this is a theoretical assumption only – this would be totally unavoidable, unless scientific research identifies the neurotoxins involved and develops a neutralizing agent that can be taken with the antibiotic. All this is conjecture and not based on known facts. It is extremely unlikely, and there is no scientific evidence, that there is any known agent that can help “detox” the brain during a spirochetal dieoff, because there is no Borrelia neurotoxin known to science.
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.
You have a helpful point of view or interesting info to add?
Email firstname.lastname@example.org for possible publication below.
Susan H Dittman:
|I think Sarah is probably right. Read on LymeNetEurope for similar research. Thank you Sarah for telling it like it is..|
|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.|
|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.|
|Dr Ritchie Shoemaker faces charges from the Maryland Medical Board February 6th 2013
|Just a quick google would suggest Ceftriaxone does penetrate the bbb. http://www.ncbi.nlm.nih.gov/pu… 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.
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)
“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 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.”
|Oh my, I never thought of this being quackery. What do you say about heavy metals leaving toxins in our bodies? So there really is no evidence to having any toxins at all in our body? Also, do you know what antibiotics would help cross the blood brain barrier for severe neurological problems. I have constant derealization (feeling like I am living in a dream) and confusion, brain fog all the time. Also, are IV antibiotics the only thing that can help? I have just started oral antibiotics. Should I try to transfer to the IV as soon as possible, or see if the oral antibiotics work for a certain amount of time (maybe a few months??) and then consider IV? Is your philosophy, “the sooner the better” for getting on IV antibiotics, or is it just as good to start off with orals? What are your thoughts?
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 metals 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 capillary 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.
Don’t give up yet!