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.
-----
An interesting viewpoint... Intuitively, I had some doubts about this whole thing.
It may have helped some people but I was a bit skeptical. I don't think "detoxing" is bad... A healthy diet & avoiding mold are serious issues. It's just that it seems that we don't have any real proof of Lyme having a specific toxin.
Any remarks - pro or against - are appreciated regarding this topic. Please feel free to post.
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posted
Well, I for one would like to see the docs scientific evidence for antibiotic resistance -- yes I know Lyme can go into the cyst form etc. But I have never seen anything in print that showed Lyme could actually become resistant to a particular antibiotic. Bartonella and maybe Babesia do have this feature I think but I don't think this applies to Lyme.
On another point -- I thought it was almost next to impossible to actually culture lyme -- and if that is the case then measuring toxins in the culture broth would also be next to impossible.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Chronic neurotoxins are as real as the disease (wait, chronic Lyme isn't a REAL diagnosis, is it?).
Oh, and it's wonderful once you figure out how to get those toxins out.
And who says the toxins have to come from the organism itself (e.g. bioaccumulation from poor methylation cycle resulting in poor detox)?
I think most of my toxins are in the form of bioaccumulation, but quite frankly, I don't care where they come from. Why? Because I am getting them out, and in turn feeling better.
"Neither does colloidal silver do much � Tom Grier did extensive research into that."
Oh, I've read that very same research before I tried colloidal silver, I thought it wasn't going to work, but boy was I wrong. I herxed all the way to the hospital once, and after 3 months there wasn't anything to be seen under my darkfield microscope. I had to start real slow. Maybe you should take your effort and find out why Tom Grier was wrong. Don't get me wrong, I think Mr. Grier had good intentions and I'm sure the negative findings were an unintentional flaw in his research.
Oh, but Mr. Blogger guy, dark field is a bunch of quakery nonsense right? Science perpetuates the belief that it's impossible to see Lyme spirochetes in the blood under a microscope. I don't have the money, but maybe you should prove that it's possible. 13 strains have been sequenced. Perhaps some strains are likely to be in the blood, and other strains are not likely to show in the blood (e.g. B31). Maybe it's an immunodeficiency (such as XMRV) that invites the spirochetes. The research seems pretty simple, and perhaps you will become famous (or most likely ignored?).
Good luck Mr (or Mrs?) blogging guy. Keep chasing that bacteria with those blinders on.
[ 11-26-2010, 06:37 PM: Message edited by: kday ]
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posted
Maybe the question is not a classic toxin like botulinum, but "toxic" products caused when spirochetes are killed. These cause inflammation and produce the herxheimer reaction. This is real.
And this blogging person is a bit too dogmatic for my taste. Anyone who claims that biofilms are not involved, is making statements that cannot be proved either. Biofilm involvement in chronic disease is just getting started in research, so a bit early to make blanket rules for borrelia.
Just don't like this tone. We need to be open to new ideas because the old ones have not cured us.
On the other hand, I am not sure how you deal with the situation, and since we are on our own with a few docs to help, maybe individual experiments by patients will turn up something useful in "detoxing," whatever that turns out to be. Don't want such an open mind that any old thing blows into it, or so closeminded that no new ideas will ever penetrate.
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quote:Originally posted by seibertneurolyme: Well, I for one would like to see the docs scientific evidence for antibiotic resistance -- yes I know Lyme can go into the cyst form etc. But I have never seen anything in print that showed Lyme could actually become resistant to a particular antibiotic. Bartonella and maybe Babesia do have this feature I think but I don't think this applies to Lyme.
On another point -- I thought it was almost next to impossible to actually culture lyme -- and if that is the case then measuring toxins in the culture broth would also be next to impossible.
The NIH tried to discredit the culture medium with their bogus, but Mattman is the expert and has been worked with spirochetes until the day she died.
She had a Ph.D. in immunology from Yale. She worked as a professor at Harvard. She worked as the director of clinical laboratories for the UN and worked with the commission on airborne infection. She held other high positions over the years and was highly qualified. Here is her book:
The NIH tried to sabotage the MPM medium by using improper techniques, and therefore claiming the medium didn't work. While I don't know why they would want to intentionally sabotage a working medium, I have learned that history repeats itself, and I wouldn't expect any different from the NIH.
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Keebler
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posted
- Excerpt from the article: "And finally, �Are you an idiot or just a liar?� - -------------
The author called Dr. B (and Dr. S, anotherLLMD) a liar or an idiot. Well, that is just not credible writing, either for a professional health person or someone pretending to be a health journalist. Such name calling goes against journalist ethics.
I am just livid after reading it. But I can't waste my limited energy on a response. But I do wish I could just forget about it.
The author of the article is not a medical person at all. She does have training in nutrition but that's about it. Her husband may have consulted on the article but it's her photo next to it.
Of course borrelia spirochetes emit toxins. That's pretty basic. Like botulism is toxic, so is borrelia. That's how spirochetes damage tissue: the toxins kill cells, interrupt connections, etc.
This site is run by Sarah and John Vaughter. Sarah is a nutritionist and John has a Chemistry Ph.D.
Sarah is still recovering from chronic Lyme neuroborreliosis and John is a survivor of a serious systemic Candidiasis infection.
Sarah dislikes the corrupt FDA, Codex Alimentarius, gene modified food and Big Pharma. Both Sarah and John are the �brain� behind the products offered on this site.
John and Sarah�s hobby is investigative health journalism and patent database research with the purpose of developing practical new products to promote health and beauty.
Please note that we are not medical doctors and that our opinion is not medical advice. Neither are our producs (?) sold as medicines, but as food supplements or beauty products. -
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sparkle7
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posted
I did the abx protocol with the binder... I never got anywhere with it. Maybe others do? My case may be different than what others experience.
It's just that there is so little proof that anything is really happening with these protocols. Seems this finding about Bbtox1 is about some kind of patent.
I don't know if it was actually proven. There are alot of vagaries surrounding Lyme & the associated illnesses. It hard to say if a given treatment is really effective.
In my case, I wonder if something that I might try is just as effective as doing nothing at all. Most of the stuff I've tried didn't do anything.
One thing I did find on a message board that does have some logic to it...
One curious thing is dr sh's protocol where a drug that never leaves the gut is supposed to "bind neurotoxins" which neither he nor anyone else has ever explained. Along with how one could possibly give an accurate test (the "VCS" test) over the internet on people's computer screens which vary greatly in quality as do people's connections to the internet. Not to mention how that stuff which is supposed to "bind neurotoxins" would cause herxes?
-----
I'm not a scientist & I'm not trying to incite controversy... It just would be nice to get some truth here. We do have to ask questions & find out the reasons as to why a particular treatment is effective.
There's not alot of research on Lyme biotoxins other than one group's efforts from 2003 which relates to a patent.
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sparkle7
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posted
PS - Maybe I'm just an old fool?
Again - I do not wish for this to be a slinging mud fest. I am just curious as to whether these protocols suggested by 2 or 3 main LLMDs is really viable. I have some suspicions about these doctors... It's nothing personal against anyone out there or the LLMDs.
I appreciate everyone's opinion.
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posted
I see, so you posted this blog stuff because you wanted support for blasting lyme docs?
I don't find this to be useful.
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Keebler
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posted
- I thought the purpose of the thread was to comment on the author's article. A key error, as I see it, was her calling LLMDs either idiots or liars. That discredits her right there.
But, to actually be clueless to the neurotoxins that borrelia produce, that really discredits her, in my book. And that is not at all about ILADS, but she makes that faulty connection.
� Neurotoxic action / damage of borrelia and other spirochetes was documented long before ILADS ever formed.
I see no mudfest slinging going on but I'm not about to let sloppy remarks from a "health journalist" just slip by. This is not slinging mud but calling for responsibility in what people write and put out there that is supposed to pass for professional work on a health site.
Had a student in any of my journalism classes ever presented such accusations in such an unprofessional manner, they would have flunked the course. There are more professional ways to ask questions besides calling certain researchers idiots and liars. And the writer simply is not very lyme literate. She could have looked outside of ILADS for plenty about toxicity of spirochetal infections.
Regarding: "Not to mention how that stuff which is supposed to "bind neurotoxins" would cause herxes?" (end quote)
That would most likely be due to the resulting low minerals from its use. It's a very delicate dance keeping minerals up where they need to be and the timing of Cholestyramine is not easy. Still, Cholestyramine is just not for everyone.
There are so many variables to consider. For instance, if someone takes acetaminophen, that drastically decreases the amount of glutathione that the liver can make. And that makes herxes so much worse.
And ibuprofen can stress the kidneys, also making herxes worse. And on and on. So, it may not be so much that one detox support plan doesn't work in general - but it just may not work for everyone once all the variable are considered.
I was disappointed with Cholestyramine for myself but, after studying how it works, found many other things that work much better for me without and discomfort. Carob, Smilax top the list. Both bind endotoxins but, at the same time, they supply wonderful nutrients rather than strip the body of them (as cholestyramine seemed to do in my case).
However, there are many for whom Cholestyramine has worked very well, as part of a protocol. -
[ 11-27-2010, 11:52 AM: Message edited by: Keebler ]
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sparkle7
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posted
lou - wherever this quote comes from - it still makes sense to me. How can the VSC test work given the variations between people's computer equipment? It also seemed reasonable to me to have questions about a drug that's used for cholesterol balance in how it also absorbs neurotoxins.
Some of these doctors are not gods... I think we should be able to question how they arrive at their treatments or protocols. So much stuff on the internet is just blindly repeated... So if X says one thing - I see the same thing repeated all over the internet. Then, it becomes fact - I suppose.
Sometimes we have to ask "why?".
Keebler- The tone of the website didn't really bother me. The lady is a nutritionist - not a journalist - as you mentioned. She has a right to her opinions on her website. Some people just share info in the way that they may think or talk. They aren't always professional writers.
Like I said - i don't mean to offend anyone. I do like to ask questions & rethink things, ideas, concepts that may be incorrect or outmoded.
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sparkle7
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This one is a bit technical. You can skip to the bottom. Neuroborreliosis the most common and dreaded syndrome I see in patients with disseminated Lyme disease is amongst the most challenging clinical problems seen.
Some mechanisms of CNS dysfunction have been fairly well demonstrated. Bb can cross the blood brain barrier. The pathogens are greeted by local immune cells including: monocytes, macrophages and dendritic cells. An inflammatory reaction medicated by cytokines and chemokines is initiated.
Antibody producing B cells appear in the CSF(spinal fluid) in unexpectedly high numbers. The Bb bacteria seem to enter glial cells(supporting cells) rather than brain neurons.
A proliferation of killer T cell(clones) has been shown. The damage to nerve cells seems to be due to cytotoxic(cell killing)side effects of this process. Autoimmune processes via the production of autoantibodies and molecular mimicry have been established in animal models. The third purported cause of Lyme/brain disease involves "neurotoxins."
From what I can gather, this seems to be a theoretical idea; there is not much science to support it.
The most frequently mentioned neurotoxin is quinolinic acid. High levels of this toxin have been measured in the spinal fluid of patients with various chronic neurological diseases.
There is experimental evidence that macrophages incubated with Bb produce quinolinic acid. Scientific evidence, from my review of the literature, does not support the accumulation of quinolinic acid in the brains, spinal fluid or bile of Lyme patients. If such evidence exists please post it here.
The neurotoxin theory, as it relates to bile acid sequestrants is: Lipid soluble toxins are postulated to be processed through the liver, then end up in bile, which is recirculated.
These toxins are then able to egress back into the blood stream, find their way past the blood brain barrier and cause neurological dysfunction. These toxins have not been identified. Bile binding resins remove these toxins causing an improvement in neurolgical dysfunction.
These ideas stem from theories described by Dr. Shoemaker in Maryland. And have been repeated by Dr. Burrascano in his guidelines.
Standing back, the theory seems dubious at the very least.
In my clinical practice I have tried these drugs: they work! How?
It turns out that Welchol lowers CRP- C-reactive protein, a primary marker for inflammation or immune activation. CRP is a circulating protein which initiates the complement cascade. This a major "effector" mechanism of the immune system.
Rather than removing neurotoxins, Welchol may be removing inflammatory byproducts of the immune response to Lyme infection.
This dovetails with my observation that this drug frequently reduces not only brain inflammation, but can frequently improve other immune mediated symptoms like joint pain.
Bottom line: Welchol and Questran help. They remove "something" that is bound to bile, or by some other mechanism. They lower inflammation based on studies which show a reduction in CRP.
Food for thought: Statin drugs like Lipitor also lower CRP. This mechanism in the prevention of heart disease may be more important than the cholesterol lowering effect.
Some studies have shown that patients on statins have a lower rate of Alzheimer's disease. Anti-inflammatory effect? "Neuroprotective" effect?
Better news. Coffee is the new wonder drug. It lowers the risk of Parkinson's, Alzheimer's, liver disease and more. It apparently reduces brain inflammation.
Posted by Lyme report: Montgomery County, MD at 7:09 AM
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Keebler
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posted
- What makes tetanus so dangerous? The toxins. Botulism? The toxins. Etc. -
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sparkle7
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posted
California Lyme Disease Fraud: Robert Bradford Admits Scheme
First Posted: 09-24-10 04:18 PM
KANSAS CITY, Kan. (AP) -- A southern California man has pleaded guilty in Kansas to marketing a phony system to diagnose and cure Lyme disease.
The U.S. Attorney's office says 79-year-old Robert W. Bradford, of Chula Vista, pleaded guilty Friday to conspiracy to commit mail fraud and introduce misbranded drugs into commerce. Three co-defendants await trial.
Prosecutors are recommending that Bradford receive a year of home confinement and five years' probation. They also want him to pay more than $40,000 in restitution and more than $400,000 earned from the scheme.
Bradford admitted setting up a company that sold a microscope the conspirators claimed could diagnose Lyme disease and a drug treatment plant they claimed could cure it.
Authorities said the drugs caused the death of one Kansas resident and renal failure in another.
Sentencing is set for Dec. 14.
-----
Why do I mention this....?
-----
Take a look at this -
Lyme Toxin Chemically Similar to Botulinum Toxin, a zinc endoproteinase
from an article on the Biochemistry of Lyme Disease, by professor Robert Bradford
He suggests that arsenic & bismuth may cure Lyme based on his studies of a Lyme toxin... Look at what happened to him. Are "they" out to get a Lyme warrior or a criminal?
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Keebler
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posted
- In our system, where lyme doctors are concerned, a plea bargain of "guilty of a scheme" is often forced. There are some mitigating circumstances in that case the that headlines and non-LL reporters do not explain. That was a terrible case, yes, a life was lost to IV bismuth. Still, his research holds much value. But the "scheme" of the dark field microscope is not at all as it appears.
Still, bottom line, if you don't want to do support methods, then don't. See how that works for you. Some get lucky. Walk away from what does not resonate with you. -
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sparkle7
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posted
His treatment caused someone to die... He pleaded guilty.
I'm pretty far out in what I consider as "conspiracy theories" & such but in this case - I just don't think so.
We need more proof that there is a toxin & that it can be mitigated with some kind of treatment.
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Keebler
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posted
- Cancer patients never die from treatment complications? -
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sparkle7
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posted
I don't know if it's true but here's this...
According to the American Biologics website Bradford claims to be a doctor although he is not a physician and has no science degree from an accredited university, according to the indictment.
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'Kete-tracker
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posted
Though the author's name-calling & the overall attitude he exudes certainly leave much to be improved on, my own LLND now believes the body is actually much better at eliminating the leftovers of spirochete & L-form die-off than was previously thought. He no longer concentrates on neuro-toxin binding & purging.
He does believe in specific supportive therapies customized to each patient's particular situation & needs, though.
MY question is whether these "other forms" that can't be completely cleared from the system (i.e: cysts & cyst-human DNA combos or "morphs") are not indeed the reason for some of the body's normal immune system responses, and PLS symptoms, that hitherto were believed to be (& consequently referred to as) an "auto-immune disorder"... the idea that the body is turning on itself.
Our bodies aren't dumb! There's something much more involved going on. We need to study these "biolfims" & B.B.-human DNA forms much more closely.
Researcher Eva Sapi has some fascinating observations. It's not just the spirochete: Borrelia b. has many forms and, within those, dozens more. --------------
� This video is a 10 minute clip, part of a 70 minute interview with Dr. Sapi from the University of New Haven.
She is credited with being the first researcher to demonstrate that Lyme spirochetes can actually create their own complex biofilm community to survive indefinitely within their hosts; both human and animal. -
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sparkle7
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posted
I, for one, am not all that enthusiastic about allopathic medicine... but we do have to be cautious of alternative medicine, as well.
There are people out there who do make a nice profit from all of these supplements & info - which can be wrong, if not dangerous.
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Keebler
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posted
- And we each have the right to make our own choices - and the responsibility to do our own research through many channels and then decide for ourselves. -
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sparkle7
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posted
Plus, we can waste alot of hard earned money & time on stuff that doesn't work.
Interesting point - 'Kete-tracker! Something for me to look into.
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sparkle7
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posted
fyi - (if this is incorrect - please post)
CFCM president Robert Bradford, was also president of the Robert Bradford Research Institute (BRI), the Robert W. Bradford Foundation, American Biologics, and American Biologics Integrative Medical Center.
According to a Stanford University official, Bradford graduated from San Jose State University and worked from 1963 to 1976 as an electronics engineer for the Stanford University Linear Accelerator Center [8].
Bradford's publications include Now That You Have Cancer (a laetrile metabolic program orientation handbook); The Biochemical Basis of Live Cell Therapy, Oxidology: The Study of Reactive Oxygen Toxic Species (ROTS) and Their Metabolism in Health and Disease; and International Protocols in Cancer Management.
Bradford is said to have received two honorary degrees: a "cultural doctorate in nutritional science" in 1983 from the World University and a "doctor of biochemistry degree" in 1984 from Medicina Alternativa, an "international holistic medical group" in Sri Lanka.
Although these degrees have no academic standing, he generally identifies himself as "Dr. Bradford.""Robert Bradford, DSc," or Robert Bradford, "DSc, NMD." I do not know the origin of the "NMD," but it could not have come from an accredited school.
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posted
I for one am not going to read anymore of your posts. Aren't you on the biowarfare bandwagon too? Find something more positive to do.
Posts: 8430 | From Not available | Registered: Oct 2000
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onbam
Unregistered
posted
This aside, Branford made some valuable contributions (promoting darkfield, etc.), and the establishment would come clean, people wouldn't be forced to such desperate lengths.
As for the toxin article--anything with this tone turns me off in a big way, and though the frustration of the author is understandable--he/she may be speaking out of ignorance.
This article seems to give a lot of info, including molecular weight, on the toxin, though I'm not sure I really have the background to understand it: http://www.biotoxin.info/lyme_toxin
What this underscores is that we all need to do our own research on any treatment in deciding whether or not to use it.
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sparkle7
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OK. I posted 3 separate views of how this idea of Lyme bio-toxins may not be as valid as people think.
If you want to take something or treat something that doesn't have any proof of working or existing - feel free.
I'm going to adjust my beliefs in regards to it. If you want to believe in something that doesn't seem to have any proof - it's OK with me.
I don't really see the point in bringing up "the biowarfare bandwagon". If you did some research - you might be surprised.
It just seems that even when the research is or isn't there - it's really about belief here. I can't really say what "Dr." Bradford's intention was but he ended up killing someone with his "scholarly" information. He does have a history in this area. Whether his intention was fraud or manslaughter - I don't know.
If there's some compelling evidence that Lyme produces biotoxins or that Dr. Shoemaker's protocol actually works - please post it.
I tried Welchol & it didn't do anything for me. Glad I got it for free.
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sparkle7
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The effects of Bbtox1 are consistent with a mechanism of action similar to that of botulinum C2 and other cytoskeletal toxins.
Studies are underway to identify the cellular target of Bbtox1 and its role in Lyme Disease. In addition, a homologous gene in Treponema pallidum of undefined function is being analyzed to determine if it codes for a toxin similar to Bbtox1.
-----
This is from 2003. Why hasn't there been any follow up to this? I wasn't able to find any today in my searches on the web.
Please post if you can find any follow ups to this.
-----
PS - I just found a whole thread about this subject on www.lymeneteurope.org . People could go there to explore this further. I'm not into politics (if you know what I mean). Data is data.
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Tincup
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posted
Sparky said... "Plus, we can waste alot of hard earned money & time on stuff that doesn't work."
Funny how this author seems to enjoy kicking the stuffings out of LLMD's and their theories, but has no problem selling a do-it-yourself special skin roller (made with surgical steel needles) that is used to poke many holes in your skin, on purpose!
Including the tender thin skin places under your eyes... and on your lips! OUCH!!!
They claim it can... "Improve (acne) scars, pigmentation spots, stretch marks, loose skin, cellulite and wrinkles"
I wonder where the science comes from for the claims they are making?
They admit it can be "quite painful" (YA THINK?)... but feel you can just "get use to it".
And thank goodness they sell the numbing cream for sissy babies. I HOPE it works to take away the pain of punching multiple holes in your skin!
Oh, and for easy clean up- they say you can just wash your roller in the dishwasher!!!!!
Ahhhhhhhhh!!!!
This is a devise that punctures your skin and can reach the blood vessels!
Sounds like TOO much fun to me!
"This roller won our dermaroller test. It improves the skin and various skin conditions by making very tiny pricks into the skin.
That triggers new collagen production in the rolled areas and the skin renews.
We sell all types of rollers, Retinol ointment and retinoic acid for optimal regeneration, vit. C for a skin serum and special separate needles for targeted, intensive treatment of wrinkles, stretch marks and scars.
TerryK
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posted
Mark J. Cartwright, Ph.D. Boston University Medical Center Boston VA Medical Center 88 East Newton Street, E-639 Boston, MA 02118
A Novel Toxin (Bb Tox 1) of Borrelia burgdorferi Mark J. Cartwright, Ph.D.*, Suzanne E. Martin, Ph.D. and Sam T. D, M.D.
The mechanisms responsible for many of the symptoms of Lyme disease remain to be delineated. Because many of the symptoms involve the nervous system, we postulated that the Lyme spirochetes produce a toxin that interferes with normal neurophysiological function. We have identified and cloned a gene of B. burgdorferi which encodes a protein that is a neurotoxin.
Initially, degenerate primers were designed to highly conserved regions within various toxin groups. These primers were used for amplification of DNA extracted from B. burgdorferi strain 2591 to identify genes that express proteins analogous to existing toxins. Degenerate primers designed to the highly conserved catalytic domains of diphtheria and pertussis toxins yielded an amplification product.
The product was cloned, sequenced, and subsequently identified in The Institute of Genomic Research (TIGR) database as BB0755, a 37 kD protein of unknown function. The full length gene for BB0755 was cloned, expressed and purified using epitope tags in the pET30a expression system, and the resultant recombinant protein renamed Bbtox1. Using the synthetic target agmantine, Bbtox1 exhibited ADP-ribosyltransferase activity. No ADP-ribosyltransferase activity was detected using elongation factor 2 as the target. In tissue culture, Bbtox1 affected the morphology (rounding) of Y1 mouse adrenal cells and C6 rat glial cells. Bbtox1 induced cell death in both Y1 and C6 cells. C6 glial cells responded to Bbtox1 in a dose and time dependent manner. Brefeldin A, an inhibitor of the trans-golgi network, accelerated the onset of action of Bbtox1 an Y1 adrenal cells.
The effects of Bbtox1 are consistent with a mechanism of action similar to that of botulinum C2 and other cytoskeletal toxins. Studies are underway to identify the cellular target of Bbtox1 and its role in Lyme Disease. In addition, a homologous gene in Treponema pallidum of undefined function is being analyzed to determine if it codes for a toxin similar to Bbtox1.
sparkle7
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posted
This is the same article that has been referenced over & over again. It's not in PubMed - it's an article, I suppose. Seems that these folks patented their findings but nothing ever came of it.
Some folks infer that it's some sloppy science but I don't know. I'm not a scientist.
Everything I come across about Lyme biotoxins says, "Further work needs to be done."
So, how can anyone establish a protocol for removing Lyme biotoxins? There really isn't any data about Lyme biotoxins.
You can mock all the articles & authors you want but there's no real studies that have verified the existence of Lyme biotoxins that I know of. You can mock me, too, if it rocks your world - but I'm just stating the facts as I have found them.
Lyme may very well have biotoxins but they haven't been discovered conclusively, yet - that I know of. I don't know if it's really worthwhile to treat something that we don't know exists. Or, if they do exist - how do you know that what you may be doing is the correct way to deal with them?
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TerryK
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why isnt't there more research on Bbtox1? good question. my guess, not a lot of research money going to non-idsa types. i think there is something more recent from europe. if i find it again, i'll post it.
spark wrote: It just seems that even when the research is or isn't there - it's really about belief here.
NOT for me! I've been infected for decades. I could not tolerate any abx the whole time I was infected except keflex which is one of the few abx that does not affect borrelia. I thought I would never be able to tolerate abx. I do so much better with biotoxin removal techniques.
I've had the genetic tests and my results fit the model of someone who doesn't make adequate antibodies for mold, spider bite and borrelia toxins. explains why a spider bite knocked me flat for over a year.
The person who wrote the article is not a doctor who has clinical experience treating lyme. I saw several things in her article that i would normally respond to but i just had surgery number 2 on my hand and it's hard to type.
i'm grateful to my doctor that he is willing to treat for biotoxins. without it i would not be able to treat with abx.
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TerryK
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spark wrote This is the same article that has been referenced over & over again.
i posted it because i thought some might like to read the whole article
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Tincup
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Sparky said... "So, how can anyone establish a protocol for removing Lyme biotoxins? There really isn't any data about Lyme biotoxins."
B-I-N-G-O!
If you want or are waiting for a piece of paper saying that something can possibly make you feel better when dealing with Lyme...
1. You may have to petition/protest the NIH for some of the millions of dollars they continue to give to IDiot ducks for Lyme research.
You know, the ones that say there is no such thing as chronic Lyme... and that their tests are accurate... and the vaccine is a good thing... and that feel symptoms remaining after their "cost-effective" protocols are ...
Get this...
"Nothing more than the aches and pains of daily living".
Yeah those toads.
OR...
2. You can work within our restricted budget and other limitations ... and listen to those who are trying desperately to help us for no other reason than to help us .... using the best information we have at the time and clinical experience and limited science ....
And be proactive and try to help yourself.
In my opinion helping yourself beats the heck out of sitting around waiting for that little piece of paper that MAY arrive in several years or may not and if it does.... at a cost of millions of dollars of tax-payers money.
posted
Welchol did nothing for me either.
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sparkle7
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It seems to me that we need something. Some actual starting point for all of this biotoxin stuff.
If not, how do you know that what you are using to treat the biotoxins isn't making them worse? Or doing nothing at all... (which is OK at least it's not getting worse).
Most of you know I'm in favor of alternative medicine, etc. It's just that there are alot of factors involved. Having a genetic problem or defect & the methyalation issue are very different than Borrelia toxins.
We may feel "toxic" due to the fact that we are ill but what exactly does that mean? It could be thousands of things... This Dr. Bradford had to pay back over $400,000. Some people are making alot of money off of our suffering - not to mention that his protocol killed someone.
I don't even think he had this scheme/protocol going for all that long. There are times when I've been taking probably thousands of dollars worth of supplements/drugs & I didn't feel any better than when I wasn't taking anything.
Throwing money away is one thing but how do we know whether some of these things are making us worse or not? I guess I can see that it's valid to do some digging.
The info about Lyme toxins is out there. Whether a person wants to continue along these lines of treatment is up to them.
It's possible some people have some secret, inside info about Lyme biotoxins but I haven't found it.
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sparkle7
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Also, the fact that this Dr. Bradford had his protocol written up in the Townsend Letter says something...
Makes me stop to think about things. I remember reading about it when it first came out. Kind of scary... I trusted the Townsend Letter or Newsletter (whatever it's called). I thought that they were fairly reliable.
So, I'm thinking that the propaganda runs every which way. We gotta be smart even though we are going through this awful illness. It's hard. We all want to find the answer.
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TerryK
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spark wrote: Throwing money away is one thing but how do we know whether some of these things are making us worse or not?
I KNOW beause i feel much better. i've stopped treatment with binders a number of times and i always go back to it because i feel better. not everyone needs this treatment. maybe you don't. i wish i didn't but i do.
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Tincup
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Sparky said.. "If not, how do you know that what you are using to treat the biotoxins isn't making them worse?"
I once hit my thumb with a hammer. It hurt.
I now try really hard not to do it again.
If you try it and it doesn't feel good... don't do it. Pretty much common sense.
Some people have amazing results clearing out the toxins... some have little to no benefit. Some try it and become worse almost immediately. They usually stop when that happens.
None of the standard removal methods seem to have serious warnings posted on them, in fact, they are often used and approved for other conditions.
As you know, even Doxy isn't approved for use in Lyme... so should we all wait for the FDA to get around to approving it while we get worse?
Nah.
Same with the removal meds you could say. If it feels good, do it. If you don't try, you'll never know.
posted
I want and wanted a bradford microscope. Does anyone know if you can still get them? I guess they would probably be more expensive now.
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sparkle7
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kday - Maybe look on eBay?
TerryK - are you referring to methylation, genetic anomalies or biotoxin treatment?
Tin - I thought getting worse was supposed to mean something is working in Lymeworld? Doxy did nothing for me.
Part of the problem is that there is no adequate testing that I'm aware of - so, how do we know which thing we are taking does what? How do you know that your body isn't detoxing on it's own? Or that you would have felt better with or without the chlorella, ------ (fill in the blank)?
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quote:Originally posted by sparkle7: kday - Maybe look on eBay?
TerryK - are you referring to methylation, genetic anomalies or biotoxin treatment?
Tin - I thought getting worse was supposed to mean something is working in Lymeworld? Doxy did nothing for me.
Part of the problem is that there is no adequate testing that I'm aware of - so, how do we know which thing we are taking does what? How do you know that your body isn't detoxing on it's own? Or that you would have felt better with or without the chlorella, ------ (fill in the blank)?
There are a number of tests.
You can assess biotoxins with C3a and C4a through LabCorp.
You can test your B12, folate, and homocysteine.
You can test MTHFR mutation as well.
If you suspect a methylation issue, vitamin diagnostics has a comprehensive methylation panel.
I didn't do most of this, but when my detox/methylation goes off/on it is like night and day. I'm thankful that these methylation protocols exist. I have KPU, which may be the underlying cause of my methylation problems. I haven't treated that yet.
I'm sure there is a lot else that I am missing. There's still argument over how to assess metals properly, so I won't mention any tests for that.
And yes, when addressing metals or even methylation, you can feel worse for a bit before better. A sad truth. Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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sparkle7
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There are many who have done the methylation protocol & didn't have much in the way of results. If you do the Yasko version - it's quite expensive for the tests & the supplements. It has mixed results from what I've read.
If it was a sure fire thing - more people would be well by now. It still doesn't explain the Lyme biotoxin issue. It's a different issue than the methylation protocol.
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posted
Wow this is great stuff. Here's a little something that might catch your interest Spark, It's a little complicated at first but one can learn it:
Pathogenesis of borreliosis: How Borrelia Cause a Self-Perpetuating Inflammatory Disease
Understanding how borrelia causes disease is the key to successful diagnosis and treatment.
Bacterial Lipoproteins (BLPs)
Regarding borreliosis, the molecular component of the pathogen that appears initiate the pathogensis are the bacterial lipoproteins (BLPs) which are found within the outer surface proteins of the borrelia cell membrane.
BLPs are fat-soluble toxins that are part protein and part lipid. They are often a structural part of the borrelia cell membrane and can be found within the outer surface proteins of borrelia.
They are very potent immunomodulators even in small amounts. Thus, a few borrelia can produce enough BLPs to initiate significant disease.
These BLPs trigger many harmful responses in any tissues and organ system of the human body. These responses, produce complex symptoms of fibromyalgia, arthritis, neurological signs, psychiatric disorders, immunologic dysfunctions, and endocrine deficiencies.
At the molecular level, the BLPs cause a dysfunction in the immune system by triggering a complex imbalance of chemical immune mediators (cytokines).
These cytokines regulate the immune system and when they are over stimulated, they produce harmful reactions from the immune system, such as pain, inflammation, and even apoptosis (cell death).
Some of the cytokines involved include: tumor necrosis factor-alpha (TNF-α), interleukins-6 (IL-6), fatty acid products (eicosanoids such as inflammatory prostaglandins, thromboxanes, and leukotrienes) that have potent inflammatory/physiological properties and many other cytokines play a role in the pathogenesis of borreliosis.
These BLPs have a key component, Pam3cys, which triggers an innate immune response that cascades into the disease borreliosis.
The inflammation triggered by the fat-soluble BLPs toxins is responsible for most, if not all symptoms of borreliosis.
So, the innate immune system and the acquired immune system are strongly triggered by the presence of the borrelia BLPs.
Toll-like Receptors and Innate Immunity
BLPs activates the innate immune system through what are called Toll-like receptors. Many cell types throughout the body carry the TLR receptors. It's a basic innate immune response that even invertebrates have.
These receptors are able to recognize molecular patterns that are unique to microbial pathogens. The body uses TLRs to detect the prescence of many microbial pathogens, not just borrelia.
The figure below shows how TLRs can detect several molecular patterns of different microbial pathogens. The TLRs that are most likely involved in borreliosis are TLR 2, 6, & 1, but TLR-2 likely plays the major role.
For a thorough review of the TLR signaling pathway see this reference: Seminars in Immunology 16 (2004) 3�9 ,TLR signaling pathways, by Kiyoshi Takeda, Shizuo Akira. Here�s the abstract from this manuscript:
Abstract
Toll-like receptors (TLRs) have been established to play an essential role in the activation of innate immunity by recognizing specific patterns of microbial components.
TLR signaling pathways arise from intracytoplasmic TIR domains, which are conserved among all TLRs. Recent accumulating evidence has demonstrated that TIR domain-containing adaptors, such as MyD88.
TIRAP, and TRIF, modulate TLR signaling pathways. MyD88 is essential for the induction of inflammatory cytokines triggered by all TLRs. TIRAP is specifically involved in the MyD88-dependent pathway via TLR2 and TLR4, whereas TRIF is implicated in the TLR3- and TLR4-mediated MyD88-independent pathway.
Thus, TIR domain-containing adaptors provide specificity of TLR signaling.
We know that BLPs are potent activators of Toll-like receptor-2 (TLR2). Thus, through TLR2, BLPs induces the synthesis of the precursor of the pro-inflammatory cytokine interleukin -1B (IL-1B).
As shown in the figure below, TLRs can activate a transcription factor known as NF-kappa B which stimulates the gene expression for inflammatory cytokines.
BLPs also activates caspase 1 and potentiates apoptosis (programmed cell death) via this route.
The lipid moiety of the BLPs contains a part that is responsible for triggering the TLRs. A synthetic analog of this moiety is called: tripalmitoyl-S-glyceryl-Cys-Ser-Lys4-OH (Pam3Cys).
Other important inflammatory mediators triggered by BLPs in immune cells are tumor necrosis factor-alpha (TNF-α), IL-6, IL-12, INF-γ, and nitric oxide (NO).
Don't know if binders remove BLP's.
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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posted
We can argue forever about this topic. Most on the board know that different protocols work for different people. Wanted to add that Questran has done wonders for me. There are very few studies about lyme and the co infections in general, so I don't expect there to be too many about the neurotoxins. I am trusting my LLMD and doing what works and hoping for the best.
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posted
The article below is from PubMed and proves the connection between elevated quinolinic acid and neuroborreliosis.
Neurology. 1992 Jan;42(1):43-50.
Neuroactive kynurenines in Lyme borreliosis. Halperin JJ, Heyes MP.
Department of Neurology, SUNY, Stony Brook.
Abstract Although neurologic dysfunction occurs frequently in patients with Lyme borreliosis, it is rarely possible to demonstrate the causative organism within the neuraxis. This discordance could arise if neurologic symptoms were actually due to soluble neuromodulators produced in response to infection.
Since immune stimulation is associated with the production of quinolinic acid (QUIN), an excitotoxin and N-methyl-D-aspartate (NMDA) agonist, we measured levels of CSF and serum QUIN, and lymphokines.
Samples were obtained from 16 patients with CNS Borrelia burgdorferi infection, eight patients with Lyme encephalopathy (confusion without intra-CNS inflammation), and 45 controls.
CSF QUIN was substantially elevated in patients with CNS Lyme and correlated strongly with CSF leukocytosis. In patients with encephalopathy, serum QUIN was elevated with corresponding increments in CSF QUIN. Lymphokine concentrations were not consistently elevated.
We conclude that CSF QUIN is significantly elevated in B burgdorferi infection--dramatically in patients with CNS inflammation, less in encephalopathy.
The presence of this known agonist of NMDA synaptic function--a receptor involved in learning, memory, and synaptic plasticity--may contribute to the neurologic and cognitive deficits seen in many Lyme disease patients.
PMID: 1531156 [PubMed - indexed for MEDLINE]
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posted
Hubby did have elevated serum quinolinic acid back in 2001 when he first got sick -- test from MetaMetrix. It was never measured in his spinal fluid during his 3 spinal taps -- we did not have a diagnosis at the time and I was unaware of this article.
I finally put the pieces together regarding quinolinic acid after reading Buhner's book -- Healing Lyme. Hubby was finally able to tolerate 5HTP to help with sleep after taking Japanese knotweed.
In the presence of brain inflammation the body diverts tryptophan from the serotonin pathway and uses it to produce quinolinic acid instead. Japanese knotweed can block this alternative pathway.
Hubby did try questran -- but he couldn't take it. It was the first thing that ever caused him to have elevated liver enzymes.
Hubby takes extra ox bile supplements and lecithin and does other things to stimulate bile flow.
Bea Seibert
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TerryK
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spark wrote: TerryK - are you referring to methylation, genetic anomalies or biotoxin treatment?
I was talking about biotoxins which includes genetic testing (HLA) and is partially treated with binders. For me biotoxins that are problematic according to genetic testing are borrelia, mold and spider bite toxins. This makes sense given my response to exposures of these toxins since I was a child.
A doctor who is experienced can test for and diagnose (or not) biotoxin mediated illness)
Diagnosis of Biotoxin Associated Illnesses � Genetic susceptibility factors (HLA DR) � Deficiencies of melanocyte stimulating hormone (MSH) and vascular epithelial growth factor (VEGF) � ACTH/ Cortisol dysregulation � ADH/ Osmolality dysregulation � Elevation of metalloproteinases (MMP-9) � Visual Contrast Sensitivity (VCS) deficits � Potential for exposure � Symptoms and history � Absence of confounders
As we discussed before, one must take more than 1 or 2 doses of binders per day to see results. in addition, the binders are only part of the protocol.
i personally do not need a double blind study to prove that biotoxin treatment works. i can sometimes get rid of blurred vision within a few hours of taking a binder. my lab tests for msh, leptin, hla etc support biotoxin mediated illness for me as well as response to treatment. i do pay attention to clinical diagnosis and treatment as do many who treat lyme despite cdc neg tests.
i know you did not have the testing needed to diagnose biotoxin illness. i don't think you were doing anythig more than using a binder 1 or 2 times a day. maybe you don't have the problem or maybe you needed the full treatment?
I hope this will help clarify some issues for you. as i've said before, similar to chronic lyme, those who don't have the problem even though they've had exposure, tend to think it is all bunk. Those who have had positive testing and who get appropriate treatment and respond believe in it and are greatful that some doctors pay attention and are willing to treat it despite lack of resouces for double blind studies.
terry
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TerryK
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i also have elevated quin and disordered typtophan. contrary to what the nutuionist who wrote the article states, there is a protocol for that in buhner's book.
terry
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lymeboy
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the tone of the article was angry and unprofessional. I have had some really great results with some of the more rudimentary "detox" methods - Lemons/water, Epsom baths, Green tea. It ALWAYS helps me to feel better pretty quickly.
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sparkle7
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bigstan - thanks for the post. I've been reading about this. It's sort of a complex explanation. Are there any treatment ideas based on this area?
Bea - I have to do more research on quinolinic acid. I don't know anything about that.
TerryK - I believe that the tests (cd3a & 4a - I think it was) Dr. Shoemaker uses for Lyme can also show a positive for CFS. How do we know it's specific for "Lyme biotoxins" & not something else? I was reading about it at about 3am last night & like I always say - I'm not a scientist.
I did do the full protocol with abx & Welchol back in the day. It didn't help me. I don't know if the concept of mold toxins can be applied to Lyme. Molds are very different than Lyme which is considered a bacteria.
I'm not really sure what Dr. Shoemaker's tests are picking up is specifically a Lyme toxin. I know some people get very ill from mold but we do have to be a bit cautious. People have been living around mold for 1000s of years.
I'm not sure why it's so devastating these days. It could be due to other contaminants or toxic chemicals. We have alot to weed through in our process of healing. I don't think it's a good idea to be paranoid about mold but we do have to be careful.
If these detox protocols help people - it's good. I just don't know if what they are labeling "Lyme biotoxin" is really that. On the unfortunate side, alot of doctors are making huge money from selling potentially false information.
This is what annoys me. We need to be able to separate the truth from the fiction in an objective manner. I'm not criticizing anyone for trying to get well as best as they know how.
MD from Maryland thinks Questran may be anti-inflammatory & that's why it seems to help. Many pharma drugs have off-lable applications.
Knowledge is power. We need to consider as many points of view as possible.
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TerryK
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sparkle wrote TerryK - I believe that the tests (cd3a & 4a - I think it was) Dr. Shoemaker uses for Lyme can also show a positive for CFS.
Those are just a few of the tests and those are used to diagnose hyperacute lyme disease. I expect that many illnesses that have overlapping symptoms could have similar test results because some people (like me) have been diagnosed with cfs when we actually have lyme. even if cfs is caused by some other infection there are some tests that are positive for more than one infection. the tests you mention have to do with immune system response. i don't know if they are problematic in cfs patients who don't have lyme.
sparkle wrote I did do the full protocol with abx & Welchol back in the day. It didn't help me.
the full protocol involves much more than welchol and abx. VEGF, MSH. MMP-9 are balanced and MARCONS are taken care of and I'm not sure if I'm missing something else. welchol must be taken 4x's per day and the source of toxins removed which means no mold exposure and lyme in remission.
sparkle wrote I don't know if the concept of mold toxins can be applied to Lyme. Molds are very different than Lyme which is considered a bacteria.
both toxins seem to cause similar symptoms and test results and respond to similar treatment probably at least in part because they both evoke cytokine production.
sparkle wrote I'm not really sure what Dr. S's tests are picking up is specifically a Lyme toxin. I know some people get very ill from mold but we do have to be a bit cautious. People have been living around mold for 1000s of years.
no, he's not measuring lyme toxins but the body's response to a certain group of toxins that evoke similar responses in the body.
sparkle wrote I'm not sure why it's so devastating these days. It could be due to other contaminants or toxic chemicals. We have alot to weed through in our process of healing. I don't think it's a good idea to be paranoid about mold but we do have to be careful.
I think mold has always been devastating under certain circumstances, there are 2 issues. mold is a problem for an estimated 1/3 of the population because of genetics. that 1/3 do not make enough antibodies to effeciently get rid of the toxins. the other issue is mold's effect on the immune system. it depresses the immune system which can be devasting.for people with lyme.
sparkle wrote I just don't know if what they are labeling "Lyme biotoxin" is really that.
i believe this is what makes the most sense based on the facts and experience with similar toxins.
sparkle wrote On the unfortunate side, alot of doctors are making huge money from selling potentially false information
my doctor treats me for biotoxins so that i can tolerate lyme treatment. i don't believe he makes much money on it at all if any. it's just part of lyme treatment for me.
sparkle wrote: MD from Maryland thinks Questran may be anti-inflammatory & that's why it seems to help. Many pharma drugs have off-lable applications
cytokines cause inflammation. cholestyramine helps by binding the toxins that cause increased cytokines thus lowering inflammation.
sparkle wrote We need to consider as many points of view as possible.
yes, i agree but unfortunately the author of the article is not well informed.
terry i'm not a doctor
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posted
We all find or own methods or detoxing biotoxins or other toxins (or not).
My detox signs are very strange, and I haven't found anyone to compare myself to on Lyme or CFS groups and forums. I accept the fact that I am unique, and perhaps I have a unique toxin(s).
What worries me is my body eventually started dumping toxins so fast that my liver and kidneys were getting stressed, and there was nothing I could do to slow down the natural detoxification mechanisms of my body. While I say my liver and kidneys were stressed, that is related to labwork, and I was actually feeling much better day to day.
I also gained a lot of weight as I released toxins. Why exactly? I don't know, but I hear gaining weight is actually common. I hypothesize that since my body couldn't release everything at once, my body created new fat cells to sequester the remaining toxins.
Were they Lyme toxins? Were they mold toxins? Were they various toxins I accumulated over a period of time? Quite frankly, I don't know and I don't care.
And who is to say that CFS/XMRV isn't what is driving chronic Lyme. The Dr. B we all know thinks that perhaps 100% of those with chronic Lyme have XMRV or MLV related viruses. The other Dr. B at ILADS had the same stance. If I recall correctly, I think he said anti-retrovirals help about 1/3 of his chronic Lyme patients recover.
Sam Donta, who resigned from the IDSA panel in 2000 has stated that you can't distinguish CFS from Chronic Lyme. However, Sam Donta is a believer in chronic Lyme disease.
This seems to make sense to me if the two diseases are related. It's actually been my belief before I heard anything from Dr. B and Dr. B.
So in reply to some of Sparkle's comments, I don't understand why you assume that Lyme Disease and CFS/XMRV are probably are not associated. Maybe they aren't, but the current evidence (which is very little) makes me believe there is an association. It would be nice to see a study, but at the same time, it would be very hard since the FDA approved commercial kits and other kits we use to detect the Lyme spirochete are inadequate to say the least. It may be a while until we see a proper study.
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Paul
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sparkle7
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TerryK - I'm glad your treatment is helping. It seems that there would be other doctors or scientists who have findings similar to Dr. S in regards to this Lyme biotoxin.
Maybe there's some bottleneck with researchers in this area? I don't know. I was trying a number of things at the time I was doing the Welchol based on my doctor's advice. Lots of money came & went on treatment during this time with very little result...
If you look into some articles about the LYMErix vaccine, you will see that the HLA-DR4 gene was discussed as to why some people ended up with severe Lyme arthritis from the vaccine. I didn't see any mention of mold or a Lyme biotoxin, though.
This was over 10 years ago, I think. One would think that there should be more research in this area since then... I don't know why all of the work with Lyme biotoxins seems to be coming from only one source - Dr. S.
This is a little suspicious to me. If this were the way to go, why aren't more scientists going down this path to continue with this line of thinking? I just see Dr. Shoemaker's website & excerpts from the same site all over the web about Lyme biotoxins.
kday - it isn't a big stretch in my mind from Lyme to XMRV to Fibro or CFS, MS, ALS, etc. I had multiple diagnosis's. It's just that the claim is that the Lyme biotoxin is what is making people ill & we have to go about a specific protocol to get it out.
Many of us may or may not even have Lyme. We don't know since there are still no really accurate tests. Maybe you could tell if you had XMRV - but there is no treatment for it that I know of. A few ideas are being tossed around but I don't think there is a specific protocol.
So, if it's XMRV that's making us ill - what about the Lyme toxin? Is that yesterday's news? I'm not trying to be sarcastic but the issue is whether there really is a Lyme toxin that needs removal from the body or if there is some way to supplement the gene which may be deficient & not able to handle the toxin.
Also - just a thought... sometimes hormone fluctuations can cause weight gain. Have you looked into that? These illnesses are notorious for adverse effects on the hormones. It may not be fat sequestering the toxins... Could be a number of things that may cause you to gain weight.
TerryK
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kday wrote: I also gained a lot of weight as I released toxins.
Lyme toxins create leptin resistance. this could be part of the problem. my leptin is 3x's what it should be which indicates leptin resistance. goes along wiht biotoxic illness.
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sparkle7
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Some further info (not specifically about Lyme biotoxins) - just one person's opinion of "the" mold doctor....
posted
"Leptin resistance is associated with the inability to lose weight and is characterized by excess abdominal fat."
This seems to fit perfectly as this is where the weight is. It isn't in my face, arms, or legs. Strangely, many people even say they can't tell even though I had to get bigger pants. You can definitely see lots of fat in my abdominal area when taking off my shirt as I used to be lean there.
TerryK - I'll see if my CFS doc can order a test for leptin resistance next visit. He is usually up to date with all the tests.
Did you do anything for your leptin resistance?
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TerryK
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spark - probably a lot of things can cause leptin resistance, I have high leptin andmany other abnormalities that are part of the biotoxin evaluation.
just curious. have you had any of the testing for biotoxic illness. MMP-9, VEGF. MSH. leptin etc... If so, what were your results?
kday - the test specifics are in the lab testing info I gave earlier. specifies all the details.
There is another product called leptin sense by precision herbs. Nutramedix has a product but I can;t remember the name off hand.
I've got to stop typing for awhile. Using one hand only is making my shoulder hurt.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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sparkle7
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No, I haven't had the tests. After finding out about all of this (no "proof" of a Lyme biotoxin) - I'm kind of skeptical that this is worth exploring.
I guess the big one I would be interested in would be HLA-DR4... I never had allergies (except when I was eating alot of raw garlic) & I don't think I have any big issues with mold if that's any indication.
I did give it a shot & it didn't seem to get me anywhere. I wish i spent the money on going on a vacation to Hawaii instead - LOL
I seem to have the greatest results from treating parasites. I was doing the salt/c protocol for a bit but switched over to Parastroy. It's strong stuff for me. I don't feel the need to get into the genetic stuff at the moment.
Innately, I think if you get rid of the offending organism, you will feel better. It's just difficult to find exactly what is causing the problem.
Getting rid of parasites takes time. I'm going with that for now. Maybe at some time in the future I'll look into XMRV if the parasite treatment doesn't do it...
There's no real treatment for XMRV - so, it's not a big priority for me at the moment.
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Keebler
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- There is very real treatment for XMRV - retroviral therapy, similar to HIV Cocktails. -
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sparkle7
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As far as I know, the anti-retrovirals are still in the testing phase. I don't think they have "found the cure" as of yet.
As far as I have been reading about this biotoxin issue, LymeMD blog seems to have the best perspective (in my opinion). This post was quite interesting...
Spirochete Associated Immune Dysregulation- A new paradigm
I just don't think it's about a biotoxin. If there are some further studies about it by some people other than Dr. Shoemaker or the other "S" doctor - I'd like to see them.
quote:Originally posted by sparkle7: As far as I know, the anti-retrovirals are still in the testing phase. I don't think they have "found the cure" as of yet.
As far as I have been reading about this biotoxin issue, LymeMD blog seems to have the best perspective (in my opinion). This post was quite interesting...
Spirochete Associated Immune Dysregulation- A new paradigm
I just don't think it's about a biotoxin. If there are some further studies about it by some people other than Dr. Shoemaker or the other "S" doctor - I'd like to see them.
I also agree with his statement that "Host factors such as exposure to toxins and stress may very well play an important role in some cases."
Not every case is the same. However, we abandoned the terrain theory many years ago, so we have some of the "if it applies to you, it would apply to me" thinking going on.
While you may or may not have a problem with biotoxins, I do. It's not a religious belief. It's not group think. As weird as it may sound to you, I actually witnessed toxins pouring from my body. After a while, it taxed my kidneys and liver a bit (but they are fine).
I don't find anyone I can compare myself with. I tried finding people with similar detox experiences. I couldn't. I think I am somewhat unique in my experience.
Anyway, my urine was so dark and concentrated for a while, I had to drink at least 3 liters of water a day (two 1.5 liter bottles) to dilute it or else I would retain fluid. It also started to get very foamy at times. In one sense, I really thought something was going wrong with me, and in another sense, I was feeling better. It didn't even make sense to me.
I had labs done and UAs multiple times. There wasn't findings that were too significant. I even bought my own UA kit.
My lunulae (half moons) have started to come back very large on my thumbs, and are appearing on my index and middle fingers now. Without methylation treatment, I had no moons, even on my thumbs. I think the B12 brought the moons back on the thumbs some, but when stopping it for a bit, they'd disappear again. I am not currently taking B12, etc.
Toxins actually started pooring after metal chelation, and I didn't feel the need to take the methyl B12, folate, P5P, etc. I would never forget to take these supplements, because they were the only things that greatly reduced my anxiety and malaise feelings. Honestly, benzodiazepines don't even compare in terms of effectiveness.
Now why did I suddenly start dumping toxins? I think it was because of chelation, but I guess I can't know for sure.
I do worry a little bit about the health of my kidneys after all this detox, and I don't like the fact that I put on extra 30 pounds (mostly in the belly).
Skeptics will remain skeptics, and that's fine. If you find out that you do indeed have biotoxin accumulation that's treated, I think you would think to yourself, "Oh, that's what they meant." If you don't have an issue, I would expect you to remain skeptical.
Since I experienced massive biotoxin detox first hand and feel better from it, there is no reason for me to be skeptical since I feel that I know the truth.
Sorry for the more detailed story. At least I didn't include pictures.
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sparkle7
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I'm sort of the kind of person who is contrarian. I posted this to see if people would either defend the Lyme biotoxins idea or agree that there's not enough data. I like to be proven wrong if it helps get people better.
I would like to see the "quackery" issue dismissed but i haven't seen any real proof that Lyme biotoxins exist. Quackery is a strong term. I figured it would get people thinking.
kday - re: Now why did I suddenly start dumping toxins? I think it was because of chelation, but I guess I can't know for sure.
Maybe the toxins were heavy metals? Isn't that the point with chelation? How do you know they were specifically Lyme biotoxins?
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Keebler
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- I think it is inflammatory to get the "quackery" issue going. It's not a correct, fair or accurate assessment of those professionals who HAVE studied the complexity of toxicity of borrelia.
By doing a full study of microbiology of all toxic infections, much could be learned and be time better spent than looking to start a fight. If you don't believe it, do what you find best for your own treatment.
But it is simply not accurate to charge those who have studied and try to help patients with matters of toxicity as quacks. -
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seekhelp
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Uh oh...fight fight fight [everyone running to the playground] Kidding. This thread can go to eternity I'm guessing.
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sparkle7
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Keebler & anyone else - I'm not interested in fighting. Science is based on actual data. There is no data that I could find that proved that Lyme has a biotoxin. I was hoping someone would post something that proves that it does.
Everyone has a right to their opinions - even if the author of the first article uses an angry tone. I can understand why she would be mad. I wasted time & money on trying the protocol for Lyme biotoxins, myself. I had no idea that Lyme biotoxins where never proven. No one ever told me this.
I posted 3 different articles that show doubt that there is a Lyme biotoxin. Someone post something that contradicts this. Otherwise, don't project your anger at me. I'm just trying to get to some truth here & let people know that this is a theory about the Lyme biotoxins - not fact.
If I would have known this - I probably wouldn't have done the protocol for so long. I got no beneficial results.
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Keebler
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Borrelia, oxidative+stress - 15 abstracts (as oxidative stress is the state of toxicity) -
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sparkle7
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Yeah, I looked at this. Nothing i could find in plain english about any biotoxins (which are a specific thing if you look it up in Wikipedia)...
There were alot of articles like this -
Identification and characterization of the factor H and FHL-1 binding complement regulator-acquiring surface protein 1 of the Lyme disease spirochete Borrelia spielmanii sp. nov. Herzberger P, Siegel C, Skerka C, Fingerle V, Schulte-Spechtel U, Wilske B, Brade V, Zipfel PF, Wallich R, Kraiczy P.
Int J Med Microbiol. 2009 Feb;299(2):141-54. Epub 2008 Aug 15. PMID: 18706858 [PubMed - indexed for MEDLINE]
or
Abrogation of ospAB constitutively activates the Rrp2-RpoN-RpoS pathway (sigmaN-sigmaS cascade) in Borrelia burgdorferi. He M, Oman T, Xu H, Blevins J, Norgard MV, Yang XF.
Mol Microbiol. 2008 Dec;70(6):1453-64. Epub 2008 Oct 23. PMID: 19019147 [PubMed - indexed for MEDLINE]Free PMC ArticleFree text
or
Lack of endotoxin in Borrelia hispanica and Treponema pallidum. Hardy PH Jr, Levin J.
I didn't see anything that directly states that this bacteria has a biotoxin or neurotoxin, though.
If the word "toxic" & "borrelia" are in the text - the search engine will find it. It doesn't mean that Lyme has a biotoxin & it's in PubMed.
If anyone has time - go through those studies & see if any of them say there is a biotoxin or neurotoxin associated with Lyme Disease. I looked through alot of them & I didn't see anything like that. Some were a bit technical for me but I did look.
Why aren't there more studies about this if it is such an important factor in recovery?
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sparkle7
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How about this one?
J Infect Dis. 1984 Oct;150(4):616. Failure to detect endotoxin in sera from patients with Lyme disease. Schmid GP, Verardo L, Highsmith AK, Weisfeld JS.
PMID: 6491371 [PubMed - indexed for MEDLINE]
Then there this one 2 years later -
Microbiologica. 1986 Apr;9(2):249-52. Endotoxicity associated with the Lyme disease Borrelia: recent findings. Fumarola D, Munno I, Marcuccio C, Miragliotta G.
Classic endotoxins have a wide variety of biological activities, including ability to degrade the cartilage matrix by activating chondrocytes (8) and an inter- leukin-1 like factor released from LPS-activated mononuclear cells which stimulates bone resorption in vitro (9).
Thus, it is not unreasonable to hypo- thesize that an endotoxin-like material of the Borrelia burgdorferi is one of the pathogenic factor(s) of Lyme arthritis.
The failure to detect endotoxin in sera from patients with Lyme disease indicates that it probably does not cause the systemic abnormali- ties of the disease (10). However, the persistence in the tissues of the spirochetes and/or their release of surface constitutents or antigens (including an endo- toxin-like substance) may be a source of patho- physiological changes.
The controversy over the endotoxicity of Spiro- chetales can be resolved only by detailed investigations of the outer membranes of the microorganism.
----
It's still just theory, though.... Maybe further info will surface? All of this is from the 1980's.
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Keebler
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- " with a thank you to A.C. Steere" you will probably not find the truth. You may do best to follow the IDSA guidelines, then. -
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sparkle7
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But that article says there is an endotoxin!!!???
I've been researching this for hours... Basically, if something dies in the body, it's not good. The body has to process it. Toxins or no toxins.
I didn't want to keep going back to both "S" doctors work. I wanted to find alternatives. So, I found this-
BILE SALTS CAN HEAL PSORIASIS, SEPTICEMIA, VIRAL INFECTIONS & EXCESS ESTROGEN
There's still alot of controversy about all of this. Both "S" doctors lump Lyme endotoxin in with all the other toxins. I don't know if this is valid. But - like I said - if something dies in the body, it's not good.
There's also the issue of HLA-DR in some people. Both of these theories seem to be backed by the so-called enemy doctors... I found studies to verify this.
So, go figure... There still seems to be a big debate about the endotoxin issue. They call it an endotoxin-like chemical. Seems like it's a poison & we would want to get it out. Just don't know if the ways in which it's suggested to get it out are reliable.
I don't know if we can alter the faulty gene that some people apparently have to make things better.
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momlyme
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Allen Steere doesn't deserve thank yous. And Keebler is right. You will never find the truth if you look to his bogus findings.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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Keebler
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- Steere's article said: "The failure to detect endotoxin in sera from patients with Lyme disease indicates that it probably does not cause the systemic abnormali-" (end quote)
However,
Definition of endotoxin: a toxin that is confined inside the microorganisms and is released only when the microorganisms are broken down or die.
That applies to borrelia. -
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