This is topic Biotoxin illness in forum Medical Questions at LymeNet Flash.


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Posted by Jordana (Member # 45305) on :
 
I had a whole workup with this and found out that I have this "dreaded" haplotype and that I had a high tgf-beta 1. Really really high.

Mostly everything else, like c4a was normal.

Does anyone think this biotoxin illness thing might be BS?

Any success with that protocol/idea?Insights?
 
Posted by sixgoofykids (Member # 11141) on :
 
I have MTHFR and have gotten well. I have had to address detoxification. Based on my own path to achieving wellness, I think biotoxin illness is a real thing.
 
Posted by Keebler (Member # 12673) on :
 
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The toxicity of many infections is very real. Lyme is very closely as toxic as botulism.

That's what causes the cytokine storm that can be so damaging. But also the toxins can attach muscle fibers (heart, etc.), organs, the inside of blood vessels, nerve fibers, the myelin sheath (as with lyme), thereby causing liver & kidney damage, etc.

The ways of such toxic infections can have some patterns yet they can also be variable and cause different damage in a range of the population. But there is no BS to the fact that borellia is a very neuro-toxic infection, indeed.

It is possible recover even with MTHFR methylation mutataion on board. Liver & Kidney support must be absolutely superb at every step - along with very specific direct assertive approaches the infections.
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Posted by Keebler (Member # 12673) on :
 
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Regarding the toxicity, the biochemistry, the microbiology and all that, a starter set:


http://www.townsendletter.com/FebMar2006/lyme0206.htm

Biochemistry of Lyme Disease: Borrelia burgdorferi Spirochete/Cyst

by Prof. Robert W. Bradford and Henry W. Allen

Townsend Letter - February / March 2006

Excerpt:

Lyme Disease Toxin

Because many of the symptoms of Lyme disease involve the nervous system, it
was speculated that the spirochete produced a toxin that disrupted normal nerve function.

Through the use of DNA manipulations and a database of known protein toxin DNA sequences, a match was made with a selected Borrelia burgdorferi (Bb) gene and a specific toxin in the database.

Protein generated from this cloned Bb gene was examined biochemically and found to have characteristics similar to that of botulinum, the toxin of Clostridium botulinum, a zinc endoproteinase.1


http://www.borelioza.org/materialy_lyme/the_complexities_of_lyme_disease.pdf

The Complexities of Lyme Disease (A Microbiology Tutorial)

by Thomas M. Grier - a 17-page pdf.


http://www.youtube.com/watch?v=r8tESJVvM88

The Biology of Lyme Disease: An Expert's Perspective

26 minute YouTube video - Jul 20, 2013

This is a 30 minute video with Dr. Alan MacDonald, a retired M.D. and board certified in Anatomic Pathology and Clinical Pathology. This revealing interview from May 2013 (1 of 3) covers many of the controversies associated with Lyme disease:
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Posted by Keebler (Member # 12673) on :
 
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http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030792;p=0

LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.

Included posts on the MTHFR Methylation issue and that "dreaded" DR HLA gene that can make it harder to metabolize toxins for some individuals.

If that is on board, important to know. Still, always ways to work WITH it in our favor.

To simplify: infections (and even the process of living) can cause / speed up oxidation in our body. That can damage tissue. Antioxidants such as those found in fresh vegetables, fruits and certain herbs can help reduce the oxidation.

The key herbs (and some of the other nutrients such as NAC, magnesium) also have other specific benefits beyond their antioxidant properties.
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Posted by Jordana (Member # 45305) on :
 
MTHFR is different than the idea of biotoxin illness. Biotoxin illness is that Shoemaker stuff.

If you have one of the "susceptible" haplotypes, according to Shoemaker, then your body is genetically unable to recognize toxins; which is not the same as a defect in the liver pathways that transform folate into glutathione.

According to Shoemaker, there are these specific markers which show that the body is not clearing toxins. What the markers are really showing are the activity of certain cytokines which are way out of whack for no obvious reason, such as tgf beta 1.

Also according to Shoemaker, the "haplotypes" that are susceptible are more likely to have these problems because their bodies do not recognize the toxins they are supposed to get rid of.

So basically he says that people with the worst haplotypes can never get better without adjusting their genetic flaws in cytokine production. And what that means is that these haplotypes have a chance of just never recovering from Lyme or environmental illness.

In a nutshell.

I don't know what I think about it. I'm very annoyed that I keep buying these sophisticated theoretical tests and what they tell me is that I have very little chance of getting well without all this specific, expensive help.
 
Posted by Keebler (Member # 12673) on :
 
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Look beyond Shoemaker to the experts in liver support, MTHFR methylation, DR-HLA issues. He's most certainly not the only one who knows of some of the individual complexities clearing toxins.

But he is not the one to look to for way to support the liver so that those differences can be worked with to make things better.

Other than mostly using cholestyramine, he is not the one to look to for other ways beyond that. I saw him in person and he just about blew apart when asked about herbal liver support.

He's right about some things but, IMO, his vision is terribly narrow as to ways to move forward.

Broaden your field of vision. There are ways - most assuredly so - there are ways to work with this. Many such "starting" link are in the liver support set.
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Posted by Jordana (Member # 45305) on :
 
Keebler --

There is really no evidence that there is a BBtox1.

I have only seen it mentioned twice on the entire internet; once in that Townsend Letter that you linked.

It makes sense that when Borrelia dies it leaves waste products that are horrifying and deeply upsetting to the immune system. The cytokine storm that follows is the "herx". It's a mild state of sepsis.

There doesn't have to be a bbtox1 for that to happen. You can get serious sepsis from an e coli or strep infection.

Ritchie Shoemaker does not believe that Lyme can be chronic. He believes that you can kill Borrelia with a comparatively short course of antibiotics and the people who stay sick from it -- the ones who do not improve with antibiotics -- have what he terms "biotoxin illness" -- the recycling of biotoxins either from Lyme or from mold or biotoxic organisms like off- gassing from blue green algae blooms.

But the "biotoxin illness" part isn't that people *get* poisoned -- its that because of certain genetic problems they can't clear them from the body.

it's a nice theory but aside from Shoemaker's theoretical patients I haven't met a single person who's benefited from this theory or his therapies.
 
Posted by Keebler (Member # 12673) on :
 
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I don't know why the term " BBtox1" is so driving here.

I don't know why the work of just one doctor who really is excellent is some ways - but not others - is one that you are trying to latch your star to.

We can take some things from Shoemaker's work that are helpful. But he is not an ILADS educated LLMD by any means.

If you are asking is lyme toxic, indeed. Certainly. The BIOLOGY of lyme is toxic. To me, that's biotoxic.

As for his term, or whoever coined BBtox1, still broaden your scope of vision for a fuller understanding.

And never believe anyone who says someone with DR HLA can never get better. They can. They have. But it requires work with an ILADS educated - an beyond true LL experienced MD &/or ND or the like.

Whatever methods used / rotated, they must have the foundation of science that ILADS provides in their educational opportunities, etc. While some of his work is very good and helpful to some degree (especially regarding mold) Shoemaker's work does not encompass the fullness of that vital detail.

As for those who can't clear toxins from their bodies, the liver support thread is full of first steps to find experts who work with those in this situation.
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Posted by Jordana (Member # 45305) on :
 
Oh, bbtox1 is the theoretical toxin that borrelia supposedly produces during its lifespan -- that's its name according to the Townsend Letter you linked. it supposedly does this ON TOP OF invading your nervous system and commencing to eat it.

I agree with you, the biology of borrelia itself is toxic enough.

I'm not latching my star to Shoemaker -- in fact I'm looking for evidence I should pretty much ignore this idea that I have a"dreaded"haplotype.
 
Posted by Keebler (Member # 12673) on :
 
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Other researchers may not have a name / number for it but there is no doubt that the neurotoxic theory is accurate. And there is still much to learn about it as we move along with what we know now about how to protect ourselves against that.

Please: Absolutely do not ignore the DR HLA haplotype detail. It is vital. Knowing this can save your life.

I have that, too. And that is so very important in all decisions I make.

To ignore that can cause undue hardship - not just regarding lyme and lyme treatment but for all Rx you may consider for the rest of your life. You might also consider MTHFR & also the porphyria detail in the thread below. Even if you don't have variations there, some of the information and perspective is key.

Working with it, improves chances of success and comfort.


To broaden scope of possibility of success regarding the differences in individuals' liver / kidney and overall metabolic waste removal abilities, a good place to begin is with an ILADS educated LL ND. That link and other good ones here.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030792;p=0

LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.
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Posted by Keebler (Member # 12673) on :
 
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Many with difficulties clearing metabolic waste - for whatever reason - find that various kinds of Rx can cause problems. Of course, for those folks, support is key but that is often just not enough to offset the liver clearing situation.

Some find that RIFE works better for them, along with key support methods. Just something to consider:


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=117755;p=0

RIFE Machine - Reference LINKS
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Posted by Jordana (Member # 45305) on :
 
Okay but this is what I'm saying --

This Shoemaker guy has these protocols. If you have a low Alpha MSH that means you have nasal staph colonies and you have to kill them.

If you have high tgf beta 1 you have to take Losartan.

There's another marker you have to take Actos for.

I can't remember what you're supposed to take cholestyramine for but it has something to do with one of those markers.

What he's done is take certain drugs and use them off label to change cytokine markers.

When that happens, supposedly the patient feels better because the cytokine patterns are normalized.

What I'm saying is I have never heard anyone say oh, this totally made me feel better, and I got over Lyme.

If there *is* anyone who's had that experience I'd like to know.

Since Shoemaker is the purveyor of this "science" I'd like to see proof that certain genetic markers indicate an inordinate difficulty in "clearing metabolic waste." Otherwise this "haplotype" analysis just seems irrelevant.

I'll give you an example. I have a sky high tgf beta 1. To solve this I am supposed to take Losartan.

Actually when I went to the doctor I asked for Losartan because I have high blood pressure and it was no biggie to switch.

Losartan manipulates the angiotensin system ( adrenal/kidney) and a *side effect* of this is lowering tgf beta 1.

K so is that a magic trick or is it relevant to clearing "biotoxin illness?"

One other reason a person can have high tgf beta 1 is that they have babesiosis. Another reason could be that they have relapse-remitting multiple sclerosis, and tgf beta 1 is the cytokine that jumps to attention during periods of remission for recovery and repair.

So I agree that Lyme can be extremely neurotoxic and that genetics are relevant to strategies for getting better. I just wonder if this Shoemaker stuff is making leaps where there's really no net.
 
Posted by Keebler (Member # 12673) on :
 
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You need to consult with an ILADS educated LLMD &/or LL ND regarding issues of lyme. Most are very familiar with issues surrounding trouble metabolizing toxins.

Take information specific to your body regarding DR HLA, etc. or whatever other results you have - or questions - to an experienced LLMD or LL ND and let them sort it out for you.

Shoemaker is not a doctor who has anything to do with treating lyme. His work has some excellent points for some, in some circumstances but it's just not adequate for lyme / TBD treatment.

As for cholestyramine, it helps some but others have found it utterly intolerable (and dangerous) - I know this because of my bad experiences with it. If it helps, great. If it does not work though, there are other ways in the liver support thread.
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Posted by Jordana (Member # 45305) on :
 
"Shoemaker is not a doctor who has anything to do with treating lyme. His work has some excellent points for some, in some circumstances but it's just not adequate for lyme / TBD treatment. "

Yes, that's what I think.

If anyone has a different opinion I would like to hear it.
 
Posted by dbpei (Member # 33574) on :
 
Dr. Shoemaker is very familiar with Lyme disease and the damage it does. If you have a certain genetic predisposition, the combination of mold and lyme can be deadly and keep you sick.

I don't believe mold toxicity is my problem, but I know of an entire family on their road to recovery as a result of strictly following Dr. Shoemaker's protocol with a trained practitioner. This is after years of being sick and treating aggressively for Lyme with IV and oral ABX, using herbs, alternative therapies, essential oils, homeopathic tx, etc. And this was with top notch LLMD's.

It is a long hard road, but my friend is doing so much better now - as are all of her family members. Her daughters are back in school and they are planning vacations together for the first time in many years.

So I think we need to give this some validity. It is a long and difficult journey, but the answer for some.
 
Posted by sixgoofykids (Member # 11141) on :
 
I was intolerant of cholestyramine and my doctor would not prescribe Actos to help me tolerate it because he felt my weight was too low for it to be safe. We had to go other routes. I'm healthy today, so there are other things you can do to achieve health.

I was sick for 30 years. Disabled for 6 of those years. I'm 52 and the fibromyalgia I had since high school has been gone since 2008. It IS possible to get better. Do what you think is right for you. Don't get too caught up in "it HAS to be done this way."
 
Posted by TerryK (Member # 8552) on :
 
I have the dreaded genotype and high tgf b-1. I can't give you the proof you want but in my experience I cannot stay on treatment for lyme OR mold exposure without cholestyramine. I've tried numerous times and the symptoms are unbearable.

I have lyme and also exposure to mold. I just had my kitchen torn out and replaced due to a leaking dishwasher. I was still sick after we had the mold remediated so my LLMD ran tests and I have high antibodies to numerous molds (many of which were tested with mold testing in our house prior to remediation) along with 3x's the normal level of tgf b-1. Cholestyramine gives me terrible reflux so I hate taking it but if I don't I get much sicker.

I can't nor do I need to prove anything for myself at this point. I've been taking cholestyramine for 10 years off and on and if I am treating I really need it. I've done the nasal testing and treatment several times and that has also been helpful. The first time I did it my sleep doctor was shocked when my cpap pressures needed to keep me breathing at night went down considerably.

I can't vouch for this site but it seems reasonable and may help you further your research.

http://www.herbaltransitions.com/TGFBeta1.html

I can't take anything that lowers blood pressure because I have orthostatic hypotension and since TGF B-1 appears to be associated with kidney damage it seems very important to get it down.

I haven't known about my elevated tgf b-1 for very long so I am still researching. I would be grateful for any info or links you have.
Terry
 
Posted by Keebler (Member # 12673) on :
 
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Clarification from my comment above where I said "not a doctor who has anything to do with treating lyme."

That was not worded quite right. I have a terrible time with word clumsiness due to fatigue.

"treating" should have been emphasized but also that any doctor's treatment formulas can be fluid over time.

He knows about lyme but at the time I went to him - although he said he'd only ever encountered one other patient sicker than I - he would not treat lyme for me beyond 3 weeks. He put all the eggs on the cholestyramine for long term. For me, that was not a path that worked, even from the start. [But that is an individual reaction.]

Glad to see other posters above comment that it may not still be or the case for all - that his treatment may be more inclusive and broader reaching, that is.

Jordan,

I guess my point is that you can't put all your eggs in one basket. Every aspect of his research is not going to fit everyone, nor would that of any doctor's.

Clarify communication on the specifics of your case at each step and looking forward as to what a particular doctor can or can't do - will or won't. Compare and contrast with various doctors.

Just please do not disregard the detail you have on the geno regarding ability to metabolize waste. This is important for the rest of your life regarding all things medical. And there are many ways to work WITH it to your favor.

Hundreds of thousands of patients die each year in hospitals because of medication / dose ramifications.

If you keep in mind your genetype detail, you are many steps ahead of that problem by being more mindful of

how your body can or can't - or struggles with - metabolize waste / chemicals in certain categories

and what you need to assist that process by avoidance of certain drugs or leaning to others . . .

& / or supplements, diet and environmental chemicals / mold exposure / avoidance

to help your liver & kidneys better work to offset your genotype.

The knowledge of your genotype detail here is a gift so that your actions can be in your favor.
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[ 02-29-2016, 03:25 PM: Message edited by: Keebler ]
 
Posted by Jordana (Member # 45305) on :
 
Thanks, that's what I was looking for.

TerryK, the only link I know of about tgf beta 1 is one you posted.

Tgf beta 1 can be high for lots of reasons; any type of inflammation or infection can do it. It seems to elevate in response to the possibility of autoimmune reactions.

That's pretty much all I know about it [Smile] .

I'm taking Colestipol. It is very helpful for my stomach problems but I haven't noted a reduction in symptoms otherwise.

I didn't realize you had been to see Shoemaker, Keebler. What I understand is yes, he only treats Lyme for three weeks.

My issue is that I've been ill for a year, but previously I had no sense that I could not recover well from either illness or "toxins." I went from completely healthy to nearly destroyed in a couple of months.

It seems like, if this genotype was really relevant, I would have gone down way before now.

But it's good to know that some people have benefited from the Shoemaker theories.
 
Posted by Jordana (Member # 45305) on :
 
By the way --

What this seems to be suggesting -- the dreaded haplotype -- is that I shouldn't be pursuing aggressive IV abx then because my body wouldn't be able to tolerate the toxic load.

Is that right?

It's frustrating because I don't understand how to stay ahead of Lyme's reproduction in my body if I have to treat it so slowly.
 
Posted by Keebler (Member # 12673) on :
 
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While sometimes, a break is required . . .

Don't confuse treating carefully with slowness. Often, slowness can be ineffective. You still need very direct targeted assertive treatment at the speed & degree that is suited specifically to your body, along with proper support methods.

Do you have an ILADS educated LLMD or LL ND who keeps current with all the ILADS conferences, etc.?

That would be best then the LLMD or LL ND is the best person to assess your specific case and suggest the best treatment avenues.
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Posted by Keebler (Member # 12673) on :
 
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Many questions may be answered for you in these two books:

https://www.youtube.com/watch?v=uj0H3T9HMeQ

"Why Can't We Get Better?" - slides are not showing, but his book has detail

VIDEO

One Hour & seventeen minutes - video presentation
Recorded at Western Connecticut State University on May 12, 2015.

Sixteen point model to consider with any treatment plan for lyme / tick borne infection / chronic stealth infections . . . .

" . . . Really, there are solutions for a vast majority of patients . . . ."

website & book: http://www.cangetbetter.com/

by a leading ILADS LLMD - November 2013

- Why Can't I Get Better?: Solving the Mystery of Lyme and Chronic Disease


http://www.lymedoctor.com/

The Lyme Disease Solution

Another excellent and well respected LLMD, book, website, etc.

ANNOUNCING A NEW EDITION OF "THE LYME DISEASE SOLUTION" TO BE RELEASED IN EARLY 2016
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