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.
Posted by seibertneurolyme (Member # 6416) on :
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
Posted by kday (Member # 22234) on :
Haha. Don't detox then. It's up to you.
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 ]
Posted by lou (Member # 81) on :
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.
Posted by kday (Member # 22234) on :
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.
Posted by Keebler (Member # 12673) on :
- 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. -
Posted by sparkle7 (Member # 10397) on :
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.
Posted by sparkle7 (Member # 10397) on :
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.
Posted by lou (Member # 81) on :
I see, so you posted this blog stuff because you wanted support for blasting lyme docs?
I don't find this to be useful.
Posted by Keebler (Member # 12673) on :
- 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 ]
Posted by sparkle7 (Member # 10397) on :
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.
Posted by sparkle7 (Member # 10397) on :
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
Posted by Keebler (Member # 12673) on :
- What makes tetanus so dangerous? The toxins. Botulism? The toxins. Etc. -
Posted by sparkle7 (Member # 10397) on :
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?
Posted by Keebler (Member # 12673) on :
- 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. -
Posted by sparkle7 (Member # 10397) on :
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.
Posted by Keebler (Member # 12673) on :
- Cancer patients never die from treatment complications? -
Posted by sparkle7 (Member # 10397) on :
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.
Posted by 'Kete-tracker (Member # 17189) on :
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.
[PLS = post-Lyme syndrome]
Posted by Keebler (Member # 12673) on :
- Regarding the complexity of borrelia and how a "stealth" pathogen can evade treatment and detection: -----------------------
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. -
Posted by sparkle7 (Member # 10397) on :
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.
Posted by Keebler (Member # 12673) on :
- 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. -
Posted by sparkle7 (Member # 10397) on :
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.
Posted by sparkle7 (Member # 10397) on :
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.
Posted by lou (Member # 81) on :
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.
Posted by onbam (Member # 23758) on :
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.
Posted by sparkle7 (Member # 10397) on :
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.
Posted by sparkle7 (Member # 10397) on :
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.
Posted by Tincup (Member # 5829) on :
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.
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.
[ 03-03-2011, 12:48 PM: Message edited by: Lymetoo ]
Posted by sparkle7 (Member # 10397) on :
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?
Posted by TerryK (Member # 8552) on :
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.
Posted by TerryK (Member # 8552) on :
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
Posted by Tincup (Member # 5829) on :
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.
Your choice Sparky.
Posted by onbam (Member # 23758) on :
Welchol did nothing for me either.
Posted by sparkle7 (Member # 10397) on :
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.
Posted by sparkle7 (Member # 10397) on :
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.
Posted by TerryK (Member # 8552) on :
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.
Posted by Tincup (Member # 5829) on :
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.
Again, your choice Sparky.
Posted by kday (Member # 22234) on :
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.
Posted by sparkle7 (Member # 10397) on :
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)?
Posted by kday (Member # 22234) on :
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. Posted by sparkle7 (Member # 10397) on :
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.
Posted by bigstan (Member # 11699) on :
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.
Posted by Rene (Member # 4870) on :
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.
Posted by seibertneurolyme (Member # 6416) on :
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]
Posted by seibertneurolyme (Member # 6416) on :
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
Posted by TerryK (Member # 8552) on :
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
Posted by TerryK (Member # 8552) on :
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
Posted by lymeboy (Member # 24769) on :
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.
Posted by sparkle7 (Member # 10397) on :
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.
Posted by TerryK (Member # 8552) on :
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
Posted by kday (Member # 22234) on :
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.
Posted by Paul Mall (Member # 27581) on :
If you don't like it don't do it.
Paul
Posted by sparkle7 (Member # 10397) on :
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.
** edited to remove Dr.'s name **
[ 11-29-2010, 07:56 AM: Message edited by: sixgoofykids ]
Posted by TerryK (Member # 8552) on :
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.
Posted by sparkle7 (Member # 10397) on :
Some further info (not specifically about Lyme biotoxins) - just one person's opinion of "the" mold doctor....
Other things can cause leptin resistance... like fructose.
Posted by kday (Member # 22234) on :
"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?
Posted by TerryK (Member # 8552) on :
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
Posted by sparkle7 (Member # 10397) on :
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.
Posted by Keebler (Member # 12673) on :
- There is very real treatment for XMRV - retroviral therapy, similar to HIV Cocktails. -
Posted by sparkle7 (Member # 10397) on :
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.
Posted by sparkle7 (Member # 10397) on :
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?
Posted by Keebler (Member # 12673) on :
- 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. -
Posted by seekhelp (Member # 15067) on :
Uh oh...fight fight fight [everyone running to the playground] Kidding. This thread can go to eternity I'm guessing.
Posted by sparkle7 (Member # 10397) on :
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.
Posted by Keebler (Member # 12673) on :
Borrelia, oxidative+stress - 15 abstracts (as oxidative stress is the state of toxicity) -
Posted by sparkle7 (Member # 10397) on :
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?
Posted by sparkle7 (Member # 10397) on :
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.
Posted by Keebler (Member # 12673) on :
- " 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. -
Posted by sparkle7 (Member # 10397) on :
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.
Posted by momlyme (Member # 27775) on :
Allen Steere doesn't deserve thank yous. And Keebler is right. You will never find the truth if you look to his bogus findings.
Posted by Keebler (Member # 12673) on :
- 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. -
Posted by sparkle7 (Member # 10397) on :
It was from the article that was "pro" endotoxin...
We suggest that an endotoxin (or an endotoxin-like material) of the microorganism plays a role in the pathogenesis of Lyme arthritis.
In a preliminary approach (5) we have shown that a suspension of heat-killed ticks (lxodes ricinus) bearing Borrelia spp. (kindly supplied by A. G. Barbour, NIH, Rocky Mountain Labs, Hamilton, MT, USA) caused geling of limulus amoebocyte lysate.
Another suspension of heat-killed ticks (lxodes dammini) bearing Borrelia organisms (kindly provided by A. C. Steere, Yale University, New Haven, CT, USA) gave positive results in the limulus endotoxin assay and elicited a febrile response in rabbits.
-----
I guess he just provided the ticks...
Posted by sparkle7 (Member # 10397) on :
1: J Exp Med. 2006 Apr 3; [Epub ahead of print] Related Articles, Links
Antibiotic-refractory Lyme arthritis is associated with HLA-DR molecules that bind a Borrelia burgdorferi peptide.
Two groups have reported evidence that Borrelia, like several other bacteria, produce neurotoxins. These compounds reportedly can cause many of the symptoms of encephalopathy, cause an ongoing inflammatory reaction manifested as some of the virus-like symptoms common in late Lyme, and also potentially interfere with hormone action by blocking hormone receptors.
At this time, there is no assay available to detect whether this compound is present, nor can the amount of toxin be quantified. Indirect measures are currently employed, such as measures of cytokine activation and hormone resistance.
A visual contrast sensitivity test (VCS test) reportedly is quite useful in documenting CNS effects of the neurotoxin, and to follow effects of treatment. This test is available at some centers and on the internet.
It has been said that the longer one is ill with Lyme, the more neurotoxin is present in the body. It probably is stored in fatty tissues, and once present, persists for a very long time.
This may be because of enterohepatic circulation, where the toxin is excreted via the bile into the intestinal tract, but then is reabsorbed from the intestinal tract back into the blood stream. This forms the basis for treatment."
Posted by TerryK (Member # 8552) on :
spark wrote: 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.
The test for biotoxin removal problems is NOT the HLA DR4 test that is related to lyme arthritis according to Dr. J. S. They apparently have nothing to do with each other.
http://www.personalconsult.com/articles/aggressivelymetxfailure.html "This HLA test is not the HLA-DR4 test that is involved in aggressive Lyme arthritis. It is also not the HLA-B27 that is found in people with ankylosing spondylosis, various types of arthritis, and some people suffering from psoriasis, inflammatory bowel disease or other autoimmune disorders."
Steere is a soldier for people who want us dead. Don't listen to a word he says.
Posted by TerryK (Member # 8552) on :
there is ample evidence that spirochetes have endotoxins. Endotoxins cause increased cytokines. Borrelia patients usually have increased cytokines. these are good reasons to suspect a toxin as the cause for increased cytokines.
J Neuroimmunol. 2010 Nov 5. [Epub ahead of print]
Cytotoxic mechanisms may play a role in the local immune response in the central nervous system in neuroborreliosis.
Nordberg M, Forsberg P, Johansson A, Nyman D, Jansson C, Ernerudh J, Ekerfelt C.
Link�ping University, Dept. of Clinical and Experimental Medicine, Division of Infectious Medicine, Link�ping, Sweden; �land Borrelia group, �land Central Hospital, Mariehamn, �land, Finland.
Abstract Aiming to investigate the role of cytotoxic mechanisms in neuroborreliosis (NB), the cytokines IL-2, IL-7, IL-10, IL-12p70, IL-15, GM-CSF and the Th17-cytokine IL-17 were analyzed in cerebrospinal fluid (CSF) and plasma from NB-patients.
NB-patients showed increased levels in CSF compared to controls of all analyzed cytokines except IL-15 but not in plasma. Blood lymphocytes from three NB-patients showed functional cytotoxicity in response to autologous Borrelia-infected macrophages.
The findings support a role for cytotoxic mechanisms in the local immune response in NB and in addition suggest an increase of IL-17.
Copyright � 2010 Elsevier B.V. All rights reserved. PMID: 21056912 [PubMed - as supplied by publisher]
[Features of cytokine levels in serum of patients with tick-borne borreliosis with different clinical signs]. [Article in Russian]
Burgasova OA, Uskov AN, Grichenko NE, Tseneva GIa.
Abstract AIM: To assess levels of several cytokines in blood of patients with tick-borne borreliosis (Lyme disease) with different clinical variants of the disease.
MATERIALS AND METHODS: Study of complex of proinflammatory cytokines (IFNalpha, IL-1beta, IFNgamma, IL-2, IL-4, IL-8) during course of the disease was performed by solid-phase ELISA using domestic diagnostic kits (Scientific Manufacturing Organization "Proteinovyi Contur", "Cytokine" Ltd., Saint Petersburg). Levels of TNFalpha was determined by ELISA using commercial kits "Boehringer Manheim" (Austria).
RESULTS: Performed comparative clinico-laboratory analysis demonstrated increased levels of LL-2, IL-4, and IL-8 in patients during acute phase of tick-borne borreliosis that could point to host's response on bacterial infection. It should be noted that in patients with arthritis levels of LL-4 and IL-2 remained high during recovery phase that probably determined by possible persistence of Borrelia burgdorferi.
CONCLUSION: Further research of cytokines during Lyme borreliosis could have important diagnostic and prognostic value.
Posted by sparkle7 (Member # 10397) on :
Just a quick response for now....
Thank for the digging guys & gals. This really bothers me so I wanted to find out more.
re:
there is ample evidence that spirochetes have endotoxins. Endotoxins cause increased cytokines. Borrelia patients usually have increased cytokines. these are good reasons to suspect a toxin as the cause for increased cytokines.
If this is the case, why is there so much controversy about this?
-----
I'm going to try to study more about this later.
Posted by sparkle7 (Member # 10397) on :
Also - what about the co-infections, spider bites, viruses, parasites, yeast, XMRV... do they also produce endotoxins or cytokines? How do you tell them apart?
Is Lyme endotoxin worse or different than any other?
Posted by TerryK (Member # 8552) on :
actually, I should have said there is ample evidence for an "endotoxin-like" substance in spirochetes. I believe some have endotoxins too but there seems to be contradictory studies about that in some cases.
Bottom line for me is that biotoxin treatment helps me and helps others too but not everyone. That said, many don't do the whole protocol but are convinced that it doesn't work based on response to cheolestyramine alone.
Supposedly if you have not dealt with MARCONS and normalized VEGF, MSH (partly through dealing with Marcons), MMP-9 etc., you will not see the big improvements.
I don't think this is the fault of the patient because it's hard to find doctors who are willing to work on the whole protocol. From what I've seen, most just do cholestyramine and/or maybe actos.
I understand why others want/need proof but given the state of the science and the political battles over lyme disease I don't expect that proof is coming anytime soon. In the meantime, I continue to look for help wherever I can get it. I can't wait years to decades for proof.
Fact is that my sister (57 years old) just died from use of antibiotics. We think it was either a cytokine storm or possibly porphyria brought on by antibiotics.
She was bedridden for 10+ years with undiagnosed lyme or lyme-like illness. She had a sinus infection so they put her on abx. They tried 3 different abx on her but she had a terrible herx like reaction on them all. She started to recover between the time she went off one abx and on another so we are sure it was the abx. Her twin took her off abx and told the Dr. she would need to be hospitalized if she needed abx. She died 2 days later.
She has the same HLA issues with toxins that I have. I could not get her or my other sister to administer binders. I think it's entirely possible that she may have lived if she had used binders. I'll never know for sure but I do know that when I started treatment for lyme, I had terrible non-stop reactions to abx even with the binders but much worse without them. In fact, prior to binders, taking abx of just about any kind that treats lyme was intolerable for me.
Plain and simple, some people need binders. I'm one of them.
Terry
Posted by Keebler (Member # 12673) on :
- Terry, I know we've talked about it but, as this may be the first post where you've mentioned the recent passing of your sister, let me offer formal, heartfelt condolences
- and thank you working through your sorrow to pass on the concern that toxicity matters can lead to fatalities - and that binders can save lives.
For others - How toxic infections, and a certain classification of medicines, can cause toxic levels of porphyrins - If the liver has a particular dysfunction, this is something to consider - and what can help.
This is why I'm always shouting: Liver support ! ----------------------
Includes links from GiGi, Dr. K, and others about KPU / HPU (mauve factor) . . .
& links from TerryK regarding METHYLATION issues -
Posted by sparkle7 (Member # 10397) on :
Wow, how sad, Terry... I'm sorry. Is it possible that your sister developed some kind of allergy to the abx?
This is a tricky issue. I feel like someone in the X-files... I want to believe... (in detox, that is) I was actually shocked to see that there was a controversy about this.
Sometimes, it's nice to have someone to blame for our suffering with this illness. It's kind of an easy target to lash out at doctors or scientists who we believe may be causing our grief.
I'm going to continue to research this. It's pretty interesting. I'm not really sure what the percentage of people are who improve with methylation therapy & binding of endotoxins.
Why would doctors prescribe the half baked version of the therapy when the full blown version is necessary? I have alot of doubts about things related to my therapy, protocol, & doctors.
I was following the protocol I was given. It made sense at the time. I would think that one should be able to see some results from a partial protocol to see if it would help to expand upon it.
There are big gaps in treatment for people who have these illnesses such as Lyme, XMRV, CFS, Fibro, MS, etc. There's alot of overlap so it's really difficult to know which parts of the illness to treat. I don't think that they are "all" Lyme. I think that there are subsets with alot of different variables.
I think these cytokine issues can relate to Lyme, Fibro, CFS, arthritis & probably alot more illnesses. Researchers have been studying this illness for 30+ years. I would think they would have isolated this Lyme endotoxin-like substance by now.
I'm going to study it further. I'll post more info as I do.
Posted by Hoosiers51 (Member # 15759) on :
sparkle7,
Just wanted to say, kudos to you for asking questions. I think we should all be skeptical and ask questions about everything we are taking. Especially treatments that aren't yet well-researched.
I'm not here to speculate whether or not these biotoxins exist. I just agree that very little is known (of course there is a lot that IS known about diseases/bacteria and toxins, but you all have got to admit, a lot is unknown). Is Cholestyramine doing ANYTHING? Who really knows.
It binds cholesterol, right? So maybe those who benefit from it are people that have a hard time digesting fats. Some people have delicate GI's that have a hard time handling fats and oils. Maybe they don't even know it. Maybe having help with those fats is helping their overall feeling of wellbeing. I'm sure having poorly digested fats floating around can't be good for anyone?
We are handed a lot of supplements, and told, "This is for X. This is for Y." I think it's good to question things, and do your own research, and come to your own conclusions.
When a doctor says to you, "This is for X." You need to ask yourself two questions: Do I even have X? And then, is there proof that this supplement will affect X's outcome?
I don't blame the LLMD's. They are just doing everything they can to try to make us better, when all other doctors have just given up. The way I figure, you might as well try something, in the chance that it helps.
But also, you have to be careful in believing something is working for a specific purpose, when you don't really know for sure why it's working.
Posted by TerryK (Member # 8552) on :
Thanks keebler, I appreciate that you care.
spark wrote: Is it possible that your sister developed some kind of allergy to the abx?
No, as I mentioned, her doctor tried 3 different kinds of abx. Her doctor thought she might be having an allergic reaction but her symptoms were similar to her regular daily symptoms but just so much worse. Seems clear it was not an allergic reaction.
spark wrote: I think these cytokine issues can relate to Lyme, Fibro, CFS, arthritis & probably alot more illnesses.
Yes I agree. I also think that most cases of the illnesses that you mention are related to infection.
spark wrote: Why would doctors prescribe the half baked version of the therapy when the full blown version is necessary? I have alot of doubts about things related to my therapy, protocol, & doctors.
I see it all the time and not just where lyme is concerned. I suppose there are many reasons. One doctor told me the book was too difficult to read (not LLMD and not biotoxins). I was surprised because I didn't find the book hard to read at all. The way the book was structured was different and I think that is what confused him.
I also think that time is a factor for many doctors. It takes a lot of time to understand some of these difficult protocols. I can think of other possible reasons but I'm sure you can too. I do my own research so that I have a good understanding of what is happening and what should be happening.
hoos wrote: Is Cholestyramine doing ANYTHING? Who really knows.
As I said before, without it I cannot tolerate antibiotic treatment so for me, and others like me, it does a lot.
hoos wrote: It binds cholesterol, right? So maybe those who benefit from it are people that have a hard time digesting fats.
I suppose anything is possible but I doubt binding fats would allow one to take abx when they couldn't before. For me, it lessens the exacerbation of symptoms that I get with abx. Can you elucidate a mechanism where your theory makes sense?
Effect of Cholestyramine on Endotoxin Toxicity and Absorption
James P. Nolan, MD and M. Vilayat All, MD
Since there is evidence that cholestyramine improves diarrheal states where failure of bile salt reabsorption would not appear significant, a study was undertaken to examine the effect of this resin on the toxicity and absorption of bacterial endotoxin.
Both the toxicity of intraperitoneal injections of a cholestyramine-endotoxin suspension, and the absorption of the suspension through everted gut sacs was compared with a similar Dowex l-X8 suspension in rats.
The results show that cholestyramine significantly reduces the toxicity of endotoxin when placed in the peritoneal cavity, and that it effectively inhibits the passage of ~xCr labeled endotoxin through the intestinal wall.
Oral cholestyramine and paregoric therapy for intractable diarrhea following surgical correction of catastrophic disease of the GI tract in neonates☆
H.S. Nagaraj, Larry Cook, Timothy G. Canty, George Haight
Abstract Ten surgical neonates with postoperative intractable diarrhea and secondary weight loss were treated with combination cholestyramine and paregoric therapy.
Within 3�5 days all infants except two showed significant clinical improvement with a decreasing number of stools, an increase in the consistency of the stool, and gradual weight gain.
The exact mechanism of action of cholestyramine is not clear. It may act by binding with bile salts and/or endotoxins in the bowel lumen or decreasing the motility of the bowel.
Used in combination with paregoric, a known bowel motility depressant, the doses of each medication can be kept quite low thus avoiding undesirable side effects.
Medium chain triglyceride formula is helpful in some of these infants to improve fat absorption further. Medication in all of these infants has been discontinued without any adverse effects.
CONCLUSION: Prophylactic treatment with enteral cholestyramine preserved cellular immune functions after partial hepatectomy in the rat, which may explain its beneficial effects on the postoperative course. Furthermore, the authors' results are consistent with the hypothesis that endotoxemia is involved in the pathogenesis of the cellular immune derangements after partial hepatectomy.
There are probably more but I'm sure you can find them as easily as I can.
As most of us know, many drugs are used extensively for off label uses. Pragmatism has to fit in here somwhere.
hoos wrote: But also, you have to be careful in believing something is working for a specific purpose, when you don't really know for sure why it's working.
Yes, I agree and that's why I very carefully and logically go about trying to determine what if anything is working for each problem. I've been on cholestyramine off and on for 4+ years and I am certain it is what is allowing me to stay on abx.
It's possible that once my bacterial load is down more, I'll be able to go without it. I was infected for almost 5 decades before I got treatment and disabled for 20+ years so I'm sure my bacterial load was very high.
Terry I'm not a doctor
[ 11-29-2010, 08:56 PM: Message edited by: TerryK ]
Posted by sparkle7 (Member # 10397) on :
Still some interesting info! In many cases, some kind of infection could very well be taking place in this constellation of illnesses. I still would like to research it further but I have to give my brain a break for the moment.
However, going back to this article may present some alternatives -
BILE SALTS CAN HEAL PSORIASIS, SEPTICEMIA, VIRAL INFECTIONS & EXCESS ESTROGEN
(SEPTICEMIA is blood poisoning by bacteria... Could be due to endotoxins?)
Good points about food digestion in relation to this Hoosiers. It is something to think about. getting rid of the toxin may have to do with a genetic problem, though.
I want to go back & compare Dr.S's view of HLA with the one mentioned prior about Lyme Arthritis. I want to understand the difference. Thanks for all the great info Terry.
Also- there are some drugs being talked about that are endotoxin binders. One I was reading about is a peptide. There's this one, too - Sevelamer hydrochloride.
----
for example -
Cathelicidin Peptide Sheep Myeloid Antimicrobial Peptide-29 Prevents Endotoxin-induced Mortality in Rat Models of Septic Shock
Andrea Giacometti, Oscar Cirioni, Roberto Ghiselli, Federico Mocchegiani, Giuseppina D'Amato, Raffaella Circo, Fiorenza Orlando, Barbara Skerlavaj, Carmela Silvestri, Vittorio Saba, Margherita Zanetti and Giorgio Scalise
I think there was one from horseshoe crabs, too...
It's alot of research!
Posted by sparkle7 (Member # 10397) on :
Most of the info I've come across about HLA-DR is just copied from website to website. It's pretty much the same info. I still don't understand why this HLA-DR is any different than the one Steere discovered back in the 80's which relates to Lyme arthritis...
This is all theorized and researched in Dr S�s book, �Mold Warriors.� Here, he explains that there are 2 �dreaded genotypes� that make toxic mold catastrophic to people who possess these genotypes.
About .005% of the population has this gene. The gene is more common in people of Northern European descent. You can actually test to see if you might have the dreaded genotype by measuring if your arms length, from fingertip to fingertip, is greater than your height.
----
If only .005% have this - it's really uncommon. I'm going to keep researching... I can see that people would want to detox but I still don't see how the gene issue with mold is the same as the gene issue with Lyme endotoxin-like substances. I just want to see the evidence from a 3rd party, myself. .005% is really low - if that's true.
Not to discount any doctor's work with this or cast aspersions on anyone's treatment...
***EDITING OUT THE LLMD'S NAME .. AGAIN**
[ 12-01-2010, 09:21 PM: Message edited by: Lymetoo ]
Posted by sparkle7 (Member # 10397) on :
I have a really long post about this but I keep getting this message -
Sorry, we do not permit the following HTML tag or attribute: Parenthesis in HTML tag
Can someone help me?
Posted by Hoosiers51 (Member # 15759) on :
Terry,
Sorry I didn't see that you had said that. I didn't read all the posts before commenting, but I probably should have posted that! I am glad it's helping you.
It was really difficult for me to take. Did something weird to my mouth, that was intolerable for me. Just drinking it mixed into liquid made my mouth do something really weird....it got this shriveled up feeling, can't recall the rest but it was strange.
Posted by sparkle7 (Member # 10397) on :
I'm going to post the studies one at a time to see which one is no-good.
first one -
Long post...
Steere 2006: Antibiotic-refractory Lyme arthritis is associated with HLA-DR molecules
1: J Exp Med. 2006 Apr 3; [Epub ahead of print] Related Articles, Links
Antibiotic-refractory Lyme arthritis is associated with HLA-DR molecules that bind a Borrelia burgdorferi peptide.
Center for Immunology and Inflammatory Diseases, Massachusetts General Hospital, Harvard Medical School, Boston, MA 02114.
An association has previously been shown between antibiotic-refractory Lyme arthritis, the human histocompatibility leukocyte antigen (HLA)-DR4 molecule, and T cell recognition of an epitope of Borrelia burgdorferi outer-surface protein A (OspA(163-175)).
We studied the frequencies of HLA-DRB1-DQA1-DQB1 haplotypes in 121 patients with antibiotic-refractory or antibiotic-responsive Lyme arthritis and correlated these frequencies with in vitro binding of the OspA(163-175) peptide to 14 DRB molecules.
Among the 121 patients, the frequencies of HLA-DRB1-DQA1-DQB1 haplotypes were similar to those in control subjects. However, when stratified by antibiotic response, the frequencies of DRB1 alleles in the 71 patients with antibiotic-refractory arthritis differed significantly from those in the 50 antibiotic-responsive patients (log likelihood test, P = 0.006; exact test, P = 0.008; effect size, Wn = 0.38). 7 of the 14 DRB molecules (DRB1*0401, 0101, 0404, 0405, DRB5*0101, DRB1*0402, and 0102) showed strong to weak binding of OspA(163-175), whereas the other seven showed negligible or no binding of the peptide.
Altogether, 79% of the antibiotic-refractory patients had at least one of the seven known OspA peptide-binding DR molecules compared with 46% of the antibiotic-responsive patients (odds ratio = 4.4; P < 0.001). We conclude that binding of a single spirochetal peptide to certain DRB molecules is a marker for antibiotic-refractory Lyme arthritis and might play a role in the pathogenesis of the disease.
PMID: 16585267 [PubMed - as supplied by publisher]
Posted by sparkle7 (Member # 10397) on :
number 2- this one had problems posting...
Infect Immun. 1993 July; 6: 2774�2779.
Association of treatment-resistant chronic Lyme arthritis with HLA-DR4 and antibody reactivity to OspA and OspB of Borrelia burgdorferi.
R A Kalish, J M Leong, and A C Steere
Posted by sparkle7 (Member # 10397) on :
Maybe look the above one up. I tried to correct it...
Number 3 -
SHORT COMMUNICATIONS
HLA-DR in meningopolyneuritis of garin-bujadoux-bannwarth: contrast to lyme disease? W. Kristoferitsch and W. R. Mayr
Abstract
Sixteen patients with meningopolyneuritis of Garin-Bujadoux-Bannwarth (MPN-GBB) were examined for HLA-DR antigens. In contrast to data in Lyme disease (LD), which is caused by an identical or closely related spirochete, no significant association was found between the neurological disease and HLA-DR.
The reported association between neurological disease and HLA-DR2 in LD may be due to the inclusion of cases with neurological disease and arthritis, since chronic arthritis in LD seems to be well correlated with HLA-DR2.
Key words��Meningopolyneuritis of Garin-Bujadoux-Bannwarth�-�Bannwarth's syndrome�-�Lyme disease�-�Histocompatibility antigens�-�HLA-DR antigens Presented in part at the Thirty-Sixth Annual Meeting of the American Academy of Neurology, Boston, Massachusetts, April 1984
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Association of HLA-DR2 antigen with serum IgG antibodies against Borrelia burgdorferi in Bannwarth's syndrome J. H. J. Wokke, P. A. Doorn, A. Brand, G. M. T. Schreuder and M. Vermeulen
Abstract
The frequency of the HLA-DR2 antigen in 33 patients with clinical symptoms and signs of Bannwarth's syndrome was 33%, which was not significantly different from the 29% occurrence in 505 control subjects.
However, all 11 HLA-DR2-positive patients had elevated serum levels of IgG antibodies against Borrelia burgdorferi, and these were present in 45% of 22 HLA-DR2-negative patients (P=0.004). In the 21 patients with anti-B. burgdorferi antibodies the frequency of HLA-DR2 was 52%, which is significantly higher than the frequency in the control group (P=0.04).
The diagnosis of Bannwarth's syndrome was serologically confirmed by a positive indirect immunofluorescence assay (IFA). A negative test result does not exclude the diagnosis, as has recently been demonstrated with more sensitive techniques.
The association between HLA-DR2 and a positive IFA suggests that the IFA selects a subgroup of patients with Bannwarth's syndrome and a different immune response. We could not demonstrate differences in the clinical spectrum and outcome between the two groups.
---
Posted by sparkle7 (Member # 10397) on :
Number 4 -
Borrelia burgdorferi infection in Europe: An HLA-related disease? C. D. Reimers, U. Neubert, W. Kristoferitsch, K. H. Pfl�ger and W. R. Mayr I NFECTION Volume 20, Number 4, 197-200, DOI: 10.1007/BF02033058 July 1992
Abstract
Various studies in the United States and Europe have established human leucocyte antigens (HLA) Cw3, DR2 and DR4 as risk factors for manifest Borrelia burgdorferi infection or the development of chronic courses of Lyme disease.
Other studies failed to confirm these findings. In the present study the frequencies of HLA A, B, Cw and DR were analysed in 283 persons from Austria and Germany with manifestB. burgdorferi infection.
No statistically significant differences were found between patients and the control groups with regard to the frequencies of particular HLA antigens, nor were differences in antigen frequencies in the patients with manifestations of different stages of disease significant.
Furthermore, a statistical re-evaluation of all the European studies failed to confirm particular HLA antigens as risk factors forB. burgdorferi infections to become manifest or chronic.
---
Abstract:
Identifying markers for chronic illness in pediatric patients exposed to water damaged buildings:
Linkage disequilibrium > of HLA DR, MSH, MMP9 and autoantibodies > > Authors: R. C. S�, Courtney Holt�, Dennis House�, HK > Hudnell� >
�Center for Research on Biotoxin Associated Illnesses, Pocomoke, Md; > �US EPA NHEERL, Research Triangle Park, NC > >
Background: No studies have previously identified biomarkers adequate to create a case definition of illness associated with exposure to water damaged buildings (WDB) in pediatric patients.
Previous work from this facility has presented a case definition of illness in adults that includes exposure, symptoms and absence of confounders, together with biomarkers HLA DR genotypes of the immune response genes; deficiency of the hypothalamic immunomodulatory hormone, alpha melanocyte stimulating hormone (MSH); excess pro- inflammatory cytokine responses, represented by matrix metalloproteinase-9 (MMP9), deficits in visual contrast and pituitary hormone dysregulation.
We have seen an increased incidence of antibodies to gliadin, cardiolipin and myelin basic protein in adults with chronic illness following exposure to WDB. Here we present data supporting a pediatric case definition using multiple biomarkers from 66 patients with illness following exposure to WDB.
Methods: Patients under age 19 coming for treatment of chronic illness at a specialized medical clinic provided informed consent for evaluation and blood testing prior to initiation of definitive therapy for presumptive chronic, biotoxin associated illness.
Symptoms were recorded and blood was sent to national high complexity labs for analysis of HLA DR genotype, MSH, MMP9, anticardiolipins (ACLA), antigliadins (AGA) and myelin basic protein (MBP) antibodies.
Lab parameters were compared to in-house registries of control > patients and published registries. Following treatment and confirmation of diagnosis, cases were then analyzed by biomarker to > identify unique diagnostic features.
Results: Control populations have markedly different HLA DR genotype distributions from cases, with relative risks for illness identified for the same genotypes as reported previously in adults.
Affected patients had lower levels of MSH and MMP9 than controls.
Marked increase in incidence of antibodies to antigliadin IgG, anticardiolipin IgM and myelin basic protein antibodies was found in affected patients compared to controls. Taken together, the combination of potential for exposure, absence of confounding diagnoses, presence of distinctive groupings of symptoms, including fatigue and cognitive problems identified over 85 & 37; of cases.
Adding HLA DR, MSH deficiency, AGA-IgG and ACLA-IgM increased the case detection rate to 100&37;. For patients with MMP9 over 400, HLA DR and MSH deficiency alone identified all cases.
Conclusion: Specific genetic, physiologic and neurotoxicologic factors can be identified in pediatric patients that identify cases of chronic illness due to exposure to WDB. Physiologic mechanisms associated with increased production of particular autoantibodies will require further study.
-------------- my comments:
Dr. S does not disclose specific HLA-DR information. So, how do we know it's different than Dr. Steer's studies?
There is still controversy as to whether HLA-DR is effected or causes issues due to some kind of toxin. The Austria and Germany study was quite large & found:
Various studies in the United States and Europe have established human leucocyte antigens (HLA) Cw3, DR2 and DR4 as risk factors for manifest Borrelia burgdorferi infection or the development of chronic courses of Lyme disease.
Other studies failed to confirm these findings. In the present study the frequencies of HLA A, B, Cw and DR were analysed in 283 persons from Austria and Germany with manifestB. burgdorferi infection.
No statistically significant differences were found between patients and the control groups with regard to the frequencies of particular HLA antigens, nor were differences in antigen frequencies in the patients with manifestations of different stages of disease significant.
Furthermore, a statistical re-evaluation of all the European studies failed to confirm particular HLA antigens as risk factors forB. burgdorferi infections to become manifest or chronic.
-----
The other idea I have is maybe this issue of mold illness is related to the antibiotics taken & not the Lyme toxins, themselves...?
Please post, anyone???? I'm all ears. Sorry this is quite technical...
** WARNING... DO NOT POST NAMES OF LLMD'S ..**
[ 12-01-2010, 09:44 PM: Message edited by: Lymetoo ]
Posted by sparkle7 (Member # 10397) on :
I'll go back & see if I can fix #2 later...
Posted by sparkle7 (Member # 10397) on :
This person really posted alot of info explaining things on this message board -
It's worth reading!
Posted by TerryK (Member # 8552) on :
spark- similar info written by a doctor who treats using the full protocol in the link I posted a ways back in this thread. I'll post it again and copy a paste a little of the document. It is a slide presentation.
Melanocyte Stimulating Hormone � MSH and VIP will be very low in persistently symptomatic patients � MSH will remain low if neurotoxins and MARCoNS are not cleared � If MSH remains low patients remain at risk for subsequent unregulated responses to inflammation
MSH � Potent protective and anti-inflammatory effects. � Affects various pathways � NF kappa-B activation, IL-10 synthesis � T cell proliferation and activity � Controls the periphery of skin, gut, respiratory membranes, blood and brain � Inflammatory cell migration, expression of anti-oxidative enzymes, and apoptosis
Low MSH � Decreases melatonin release affecting restorative sleep � Decreases endorphin production. Pain perception magnified � Increasing problems with carriage of MARCoNS, �leaky gut� and gliadin antibodies
Effects of Low MSH � Dysregulation of gonadotrophins contributing to the androgen deficiency often found in neurotoxic patients. � ADH dysregulation with excess free water loss by the kidney and excess salt in the sweat. In patients this presents as constant thirst and tendency for frequent static electrical shocks � Decreased TSH almost never seen � Marked sensitivity of ACTH/cortisol in low MSH � Decreases GH release not confirmed; impaired production likely
Multiply Antibiotic Resistant Coagulase Negative Staphylococci � MARCoNS will colonize deep aerobic nasal space of patients with low MSH especially with prolonged antibiotic use � This is colonization not infection (commensal) � These organisms release hemolysins destroying RBC�s; also causing cytokine release as foreign antigens � Exotoxin A is in MARCoNS isolates and can split MSH, inactivating it
MARCoNS � These are invariably biofilm formers making treatment difficult � Perform a deep nasal C&S. Make sure lab knows that you want sensitivity on staph epidermidis and other coagulase negative staphs or they will not do them � Ideally the lab should use API-staph kit � Cambridge should be able to offer this test by 9/15
Treatment of MARCoNS I won't copy this part because it shows 2 of the doctors names
Complementary Rx of MARCoNS � Intranasal colloidal silver � Intranasal Agrumax or GSE � Intranasal tea tree oil (5-10% solution max) � Use at least 2 of the above qid for 3-6 weeks � Re-culture after treatment
I'll try to get back to this thread because there are several things that I want to respond to but not sure if I'll have time this week.
Terry
Posted by sparkle7 (Member # 10397) on :
I don't understand why Dr. S does not state the specific HLA-DRs in his study. Why does his info seem to use code from a lab report rather than just stating the specific ones? Why does Dr. S state that the HLAs are different than the ones Dr. Steere found?
Maybe I'm ignorant of these things but it's something I don't get. There's also the Austrian & German study which didn't find a relationship of Lyme to HLAs...
If people kill the pathogens, wouldn't the body eventually get rid of the so called biotoxins? I don't think I've came across anything comparing Lyme "biotoxins" to mold biotoxin. Why are they similar? How do they know it's Lyme biotoxins & not a reaction to antibiotics which can be derived from mold or fungus?
Also, How do we know how accurate all of these tests are?
***EDITED OUT THE LLMD'S NAME**
[ 12-01-2010, 09:45 PM: Message edited by: Lymetoo ]
Posted by Pinelady (Member # 18524) on :
http://www.ncbi.nlm.nih.gov/pubmed/21113897 2010 Dec; AbstractInfectious diseases can affect the previously healthy adolescent as well as severely immuno-compromised intensive care unit patients.
The effects may be merely annoying, but in many cases they can become life-threatening.
The immediate impact of infectious diseases on everyday life can be seen with Helicobacter pylori, which infects more than 50% of the global population,
or Borrelia burgdorferi, which causes a major tick-borne disease in Europe and America.
On the other hand, in less-developed countries, infections causing diarrhea are still among the most important causes of death... - especially in children.
Research in Medical Microbiology ranges from attempts to better understand the physiology and ecology of the causative agents to epidemiological typing of clinical isolates.
It covers the mutual interactions of pathogenic microbes as well as the interplay between microorganism and host.
Among the most pressing problems in medical microbiology is the emerging of antibiotic resistances.
In recent years, both Gram-positive bacteria - with the first description of vancomycin resistant Staphylococcus aureus - as well as Gram-negative species - e.g. with the emergence of extended spectrum beta-lactamases - have seen new and dramatic occurrences of resistance.
Consequently, the detection and characterization of new antimicrobial compounds is, more than ever, an important task.
All these topics are covered by the research articles compiled in this Special Issue of the Journal of Basic Microbiology. Further, the publication of this Special Issue should underline the importance of "Basic Microbiology" for "Medical Microbiology": The sometimes existing gap between basic research and application needs to be bridged urgently and in a time-saving manner as often as possible.
We are convinced that only combined efforts of experts in both areas will allow us to tackle future's problems in infectious diseases efficiently-----------
This is published medicine---They are recognizing that resistance may mean stealth and treatments are urgently needed...When they get much sicker they have always cited resistance and let them die---Now they are telling them the truth...
Posted by kday (Member # 22234) on :
I'm going to keep everything simple for the sake of simplicity.
quote:If people kill the pathogens, wouldn't the body eventually get rid of the so called biotoxins
Who knows. If you believe in terrain theory (which are current medical system does not), you would think clearing the terrain first would be your best bet.
quote:I don't think I've came across anything comparing Lyme "biotoxins" to mold biotoxin. Why are they similar? How do they know it's Lyme biotoxins & not a reaction to antibiotics which can be derived from mold or fungus?
Again, who knows. I don't know what my biotoxins are/were and finding out isn't important to me, but I had troubles starting any antibiotic, herbs, or colloidal silver as I encountered die-off.
If you have a biotoxin problem, KPU, or methylation problems, I think it's best to address those first if only to reduce symptoms and/or the herxheimer effect during treatment. However, I do believe addressing these things can help greatly from an immunological aspect as well.
If you are undergoing less stress, you will have a stronger immune system and more NK cells.
You can go about it how you choose, but to look for documented evidence from "scientific" test for any particular treatment, my goodness, it just will never be a reality, for any condition, and certainly not for lyme disease. Of course it would be nice to have, but it won't happen, and lack of it won't mean anything with respect to what the truth is.
I have been taking the approach of reading about people who are having success and making recommendations, trying what is mentioned and offered, particularly more that resonates with me. If they give reasons and stories about what they've seen that seem to reflect people with similar situation to myself, I give it more weight. I'm looking for what works for me, assuming everyone is different anyway. I don't believe in the idea of finding everything that's wrong, then waiting for trials that 100% work for everybody that have that thing wrong. That sounds like quackery to me.
When things work for me, that's good, no "scientific proof" needed in terms of stupid tests on other people that aren't me, just reality, which counts more. I think that word "scientific" gets misused to give things credibility. I also think you can use energy testing to help figure out what might work for you. It has proven itself valuable for me, and many others as well.
By the way, I wondered about the VCS test as you did, how much will the results reflect the computer I have. But, in any event, I have been using cholestryamine and I believe it has been helping, and I also note that my VCS scores have improved during that time, so it does appear it is measuring something, at least relatively. I don't know if I would consider an absolute score particularly meaningful.
Posted by sparkle7 (Member # 10397) on :
Pinelady - So you are saying the pathogens are drug resistant..? So, even if people go through the herx, it's not going to get rid of the problem.
How about the Lyme endotoxin protocol? Is this just an on-going thing to moderate the effects of "living with Lyme"?
If we don't know if the endotoxins are from Lyme or mold - we don't know what the tests are picking up & if we should be treating Lyme, mold or some other toxin.
I don't think detox is bad. We just need to know what it is we are trying to get rid of. It's a process of elimination in more ways than one. Do we continue taking abx? Do we treat babesia, bart, viruses, herpes, chemical toxins, heavy metals, etc.
I'm sure all of these things create "toxins" in the body. I'm sure even the drugs we take to get rid of these thing create toxins.
I was tested for some of these things & I could rule them out. I don't want to keep detoxing mercury if my tests say it's not an issue for me. Same is true of the co-infections, Lyme, etc.
I dont think they should all be lumped in the same category. I don't want to take an expensive drug like mepron for babesia if i don't have to... So, I wouldn't want to detox for Lyme biotoxins unless they are there.
All of these specific detoxes take time, money & effort. It seems important to know which things we are addressing. Also, if we have genes that make it difficult to detox - how do we really address this? There is the field of epigenetics. Are there epigenetic cures to address the insufficiency of "poor genes"?
I don't think taking chlorestramine (spelling?) and actos for the rest of our lives is the best solution. I don't have anything against anyone who does this protocol but I'm brainstorming here.
Maybe there are other ways to address this issue?
Posted by sparkle7 (Member # 10397) on :
MichaelTampa - I share some of your feelings. It's just that we need to have some basis for protocols. I'm not looking for 100% scientific evidence.
We need to cross reference things to find what is real from what is lacking. I used to look at alot of people's recommendations but we can't always take what people say to heart.
1. everyone has unique genetics 2. people may not have the same infections 3. sometimes people state that they are "cured" when they haven't given it enough time to really see if they are actually better or indeed "cured" 4. we don't really know if other factors are effecting changes in health - like stress, allergies, other supplements, drugs, etc. 5. the placebo effect 6. some people just drift off & we never hear from them to see if they continued being well 7. people who post on message boards may have an agenda, could have psychological problems or just be lying (???)
With testing, we don't know if it's really accurate.At least we do have some controls over the tests to get an idea of what is happening, though. Also, the larger the study - the more chance we will see an accurate result.
One of the complaints of one of the doctors mentioned here was that he was using his patients as test subjects to see how his theories were working. I don't know - maybe I'm old fashioned but that seems kind of unethical to me.
I have had this sort of thing done to me by practitioners in the past - so, it's not out of the question.
We need to be able to compare studies to determine if these protocols have any validity for us as individuals. We need to have all of the info so we can decide for ourselves before we make the investment to time, effort & money.
Going through scientific studies can help us to determine what is really going on with our protocols.
I wouldn't say the bacteria become antibiotic resistant, because as far as I know, as there is no evidence of this. However, if you were to navigate around the steerites, you would know they have innate mechanisms to avoid antibiotics and the immune system.
In reality, drugs like doxycycline seem to be more bacteriostatic than anything. Perhaps this gives the immune system a better chance of getting rid of the pathogens on their own, and perhaps this is why Doxy et all seems to be effective in early stages of Lyme disease. Perhaps some people (us) also have various genetic or epigenetic reasons why their innate immune systems can't eradicate the infection.
Just trying to keep things simple once again.
Posted by sparkle7 (Member # 10397) on :
re: Perhaps some people (us) also have various genetic or epigenetic reasons why their innate immune systems can't eradicate the infection.
----
Does this have anything to do with Lyme neurotoxin detoxing? (Not being "snippy"... just a simple question.)
Posted by kday (Member # 22234) on :
quote:Originally posted by sparkle7: Does this have anything to do with Lyme neurotoxin detoxing? (Not being "snippy"... just a simple question.)
Sure. Why not?
But I think I applies to MCIDS more than Lyme itself.
Posted by sparkle7 (Member # 10397) on :
FYI - Dr. H proposed that Chronic Lyme is really MCIDS - MultipleChronic Infectious Disease Syndrome
---
Yes, I can see this as being valid. I'll have to look into it further to see if he has some suggestions for treatment.
Is the reason our immune system can't get rid of the infection something to do with genetics? If so, how can the Lyme biotoxin detox or protocol developed by both "S" doctors help?
Seems like it's more of an attempt of living with Lyme or the biotoxin illness. If we don't remove the offending pathogen - we'll continue to be ill.
If everything worked like it's supposed to - we would be rid of the Lyme Bb after taking an abx course for a few months. It's just difficult since we don't know if we are really ill from Lyme exactly or something else or some combination of things.
Side effects from abx are very similar to the symptoms of Lyme & the co-infections.
The tests are not accurate & expensive - so, we can't measure our progress - either with treating Lyme or with the detox protocols.
There's varying studies as to whether Lyme really does have an HLA specific component. Maybe someone could enlighten me about this?
**EDITED OUT THE NAME OF THE LLMD**
[ 12-01-2010, 09:49 PM: Message edited by: Lymetoo ]
Posted by lymie_in_md (Member # 14197) on :
Terry -- I'm really sorry for the loss of your sister
Michael in Tampa: Keep it up, it is what I did and I got well.
Sparkle : good to see you looking for answers
hoos and kday : good to see you out here
Me : I had a few minutes to peruse lymenet, now a luxury for me. I'm very involved in other things.
After the IOM meeting : we are years away from anything meaningful to help us. The best research is based on what folks have tried successfully and reported here (abx to alternative).
Hopefully the below comments are useful:
Just some thoughts on cholesterol: lyme disturbs our working biology, with that in mind, the results we can annecdotally determine affect organ function, then tissue function... etc... So the liver an organ possibly attacked from a lowered immune system given a rise in yeast starts to under perform. Well what affects does yeast possibly have on the liver, possibly the production of bile. Without normal bile production the liver and the gall bladder both congest. And from my own experience, whatever its worth (based on liver cleanses and annecdotally the number of gall bladders removed especially in lyme disease), cholesterol congeals without a normalized liver and blocks bile ducts.
Now the liver doing its normal job would clean the blood efficiently, with lyme, congestion and the advent of other infections it isn't. Now the body still has to remove what the liver no longer can't. Leaves it to the kidneys, digestion, lungs and skin. You can see a system which can get over taxed in time. So in a sense using binders, chelation, lymph drainage, kidney support, on and on, you maybe supporting the body for what the liver use to do and still won't.
This isn't to say more isn't going on like, hormones in the body not regulating correctly. Or issues around the neck mouth, ears and brain. Not to mention joints and senses.
So what am I saying: Our body is a house of cards, just knock one over like the liver card. If you can get one card to stand, I'd start with the liver -- as long as heart or cancer issues aren't in the way.
So what lyme might initiate: the disruption of our detoxifying organs. If the organs can be corrected, maybe there are no issues with biotoxins.
Good luck to all of you...
Posted by sparkle7 (Member # 10397) on :
One of the main functions of bile is to break toxic substances into smaller pieces. These small pieces become bound to sulfur containing substances like glutathione and pass into the colon.
Beneficial intestinal bacteria protect the colon from the toxin. These same healthy bacteria later facilitate separation of the toxin from bile acid which is reused to remove more toxins from the body as the toxic substance is eliminated in feces.
Persons lacking healthy intestinal bacteria will be unable to protect the colon from toxin injury and separate toxins from sulfur transporting particles. Consume healthy live bacteria from food daily(sauerkraut, unpasteurized goat yogurt, raw milk etc) and make certain you truly need antibiotic therapy to prevent antibiotic killing of good intestinal bacteria.
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Carcinogens such as cleaning compounds, pesticides, food packaging substances, hormone mimicking pollutants, water contaminants etc. become stored in the body in fat, liver and lymphatic tissue when they are not promptly removed. These carcinogenic substances produce inflammatory reactions and ultimately can cause cancer.
Failure to excrete toxins promptly can produce immunologic reactions and inflammation in the liver arteries. As the arteries become injured the blood flow into the liver decreases damaging the health of liver cells and ultimately the liver�s ability to produce adequate bile suffers.
When bile flow is reduced the cholesterol levels rises in the blood producing sludgy blood flow.
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Toxic substances(excess estrogens,. bacterial endotoxins, viral particles etc.) are broken down in the intestines into smaller non-toxic particles by bile acids.
The bacterial endotoxins are among the most dangerous substances known. Several endotoxins are capable of producing irreversible shock with bleeding disorders when they enter the bloodstream unless these bacteria are promptly killed by the correct antibiotic so they immediately cease supplying the blood with more endotoxins..
Bile salts split endotoxins into harmless particles[2] preventing them from reaching the blood stream.
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**EDITED OUT NAME OF LLMD**
Beets increase bile flow .and thin the bile. Lecithin, choline, tumeric, cucurmin, yarrow, Oregon grape root, taurine, milk thistle, artichoke and dandelion have similar effects..
[ 12-01-2010, 09:52 PM: Message edited by: Lymetoo ]
Posted by Lymetoo (Member # 743) on :
***DO NOT POST NAMES OF LLMD'S!!***
Sparkle.. Your PM box is full.
Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by Lymetoo: ***DO NOT POST NAMES OF LLMD'S!!***
Sparkle.. Your PM box is full.
Just reiterating. Way too many doc's names used in this thread.
Posted by sparkle7 (Member # 10397) on :
Thanks for removing them. I didn't know it was a problem if you posted a study or something published. I just thought it was for personal experiences with doctors.
It's kind of hard to know who is doing the study if you don't post the names. I won't do it again.
I thought I cleared my mailbox... I'll check it again.
Posted by Pinelady (Member # 18524) on :
sparkley what I was trying to convey was that some researchers have cited resistance to antibiotics for organisms such as Malaria/TB/HIV/etc. etc.
so they can come up with new vaccines...
Not new treatments----
Now we know that they are not testing and treating for all the stealth they could be ill with and leaving the patients sicker than they imagine---
not to mention possibilities of transmission.
Posted by lymie_in_md (Member # 14197) on :
Sparkle -- its great point, because I love beets, which is something every lymie should have in their diets despite the sugar. And the sugar we need anyways to stay hydrated and to keep the body going.
Posted by sparkle7 (Member # 10397) on :
There's so much conflicting evidence about all of this - it's hard to know how to approach it. I'm still a bit skeptical of all the testing & the advised treatment for these toxins.
I think I would stick with the more natural approaches first. I'm glad people are doing well with the cholestyramine. There are other approaches we can do for ourselves like binders (clay, charcoal, chlorella, psylium, etc.) plus herbs, bile salts...
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Kidding. This thread can go to eternity I'm guessing.