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» LymeNet Flash » Questions and Discussion » Medical Questions » Options for Addressing Autoimmunity

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Author Topic: Options for Addressing Autoimmunity
SForsgren
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The longer that I treat LD with antibiotics, the more I begin to believe that autoimmunity does become a significant issue for many of us. Though I don't believe the infections are gone/erradicated, I do believe that the load becomes quite low and it is our continue response that creates many of the symptoms. This combined with autoimmunity that results from chronic LD may be significant. I don't believe the Post-Lyme syndrome advocates position that there is no infection persisting, but I am of the opinion that our immune response and autoimmunity do become a significant issue that must be investigated.

Has anyone looked at this in any detail? I would be interested in hearing what tests and treatment options you considered on the autoimmunity front.

Thanks,
Scott

--------------------
Be well,
Scott

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lymielauren28
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Scott I completely agree with you. I have thought about this long and hard and have come to the conclusion that much of what I am dealing with is an immune system that seems to be stuck in overdrive.

I KNOW that I am still infected to some degree but I now deal with allergies to almost everything.

cats,dogs,grass,pollen,dust,mold,milk,cheese,
eggs,perfume,car exhaust,etc.

I have a runny nose all the time, along with red, itchy, watery eyes.

My LD doc suggested steroids to calm down my immune system, but I refused.

I would love to here some natural ideas on what to do about autoimmunity and allergies.

Hopefully someone will be along soon with some more feedback.

--------------------
"The only way out is through"

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Sojourner
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I'm not so sure, Scott.

Having some familiarity with the grand daddy of all autoimmunes, MS, it seems that researchers keep going down this path and they are never able to make gains focusing on "auto immunity", or I should say, they make some gains with therapy, but there always remains doubt because of lack of the true nature of the mode of action of therapy and an imcomplete response.

There are many examples but here is a most recent one. Revimmune is the new darling of MS treatment. One's immune system is killed in 4 days of super high dose chemotherapy. Over the course of two weeks your immune system comes back on line. During this time patients are given courses of abx, antifungals (diflucan) and antivirals all to prevent infection during this vulnerable phase of treatment. These anti-pathogen therapies continue for a few months.

The treatment seems pretty successful, but is not 100% (about 50% still show disease activity). Furthermore doctors are now having their revimmune patients begin copaxone (an immunomodulating MS drug) to "retrain" their immune systems (whatever that means) calling more into question the efficacy of this treatment....If it's so good what's the need for a relatively ancient MS drug for follow-up.

If MS had autoimmune components wouldn't killing off your entire immune system cure the disease? Time and again disease process returns.

I'm not saying that molecular mimickry blah,blah, blah, couldn't play some role, but I think there is just too much we don't know about the infectious model in this disease to pronounce this. And lastly, the remitting and relapsing nature of lyme (and MS) just doesn't square with me in relation to autoimmune illness---this part really fails my sniff test.

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KS
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This is the magic question. I've looked into it quite a bit and have found few answers.

One thing I found interesting was with regard to the mouse study that was published a few months back that showed persisting Bb after 1 month of IV treatment. I communicated with the lead scientist and he theorizes that the Bb may be dormant (not directly pathogenic) but may continue to give off a protein that can elicit an immune response. If this is true, than both scenarios for continued symptoms (i.e. presence of Bb and active immune response) would be correct.

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ldfighter
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Isn't this where IVIG comes in? Seems to have mixed reviews, especially in terms of lasting benefit.
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chamade
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Yes, IVIG seems to be one option that addresses the autoimmunity problem. The good thing about it is that, as opposed to steroids, it doesn't wreck your immune system but 'replaces' it.

This is what I am pursuing now and will be seeing a neuro to have tests done for it. My system cannot take any more abx - and they are not helping anyway.

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Why me? Well, why not me???

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Larkspur
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My LLMD had me on Betamax (beta-glucan) to modulate my immune system after I had a horrible response to taking transfer factor (by Researched Nutritionals)

In fact, I had such a terible response, she called the lead doc at Research Nutritionals and he suggested the Beta glucan

It worked really well for me. I believe I took 2 caps 3x/day. My LLMD said you do one or two bottles, stop, and then come back to it in several months (I'm paraphrasing)

I certainly don't believe in post lyme blah blah blah, but having untreated lyme for 30 + years, of course my immune system is confused!

--------------------
"We must be willing to get rid of
the life we've planned, so as to have the life that is waiting for us" - e.m. forster

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SForsgren
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Sojourner, my opinion is that if I didn't look at problems where little is known, I would not have the same potential of attaining wellness.

I think we have to think outside the box. I am very much of the belief that auto-immunity plays a role. Maybe not for all, but in my case, I am starting to be of this opinion.

Interestingly, I did an Asyra scan this weekend and it showed the top 2 issues were Bartonella and auto-immunity. Not every solution has to follow the autoimmunity treatment options presented to MS sufferers. I am aware of some options and looking for comments from others.

KS - I agree that there is infection present and immune response. However, if the dormant infection does not require an immune response, then quieting it may be a logical direction.

Chamade, interesting comment. I am looking into IVIG as well. My original thought was that it would boost immune function which may not be good if autoimmunity is present. Is that true that it addresses autoimmunity as well? Is that b/c the new cells are not entrained to attack your own tissue? Good comments. Thanks

I think we need to stop looking at labels like Post Lyme Syndrome, etc. and focus on getting well. If someone offers me a solution, they can call it whatever they want. That said, PLS often implies no ongoing infection. I strongly disagree with that and do believe that there is active infection, but likely at very low levels.

--------------------
Be well,
Scott

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Marnie
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My sis has been dx'd "autoimmune". This pathogen "tricks" us into destroying our own collagen, elastin, etc. for its own benefit.

MMP9, metalloproteinase 9, for example, is a zinc binding protein. Bb has "zinc fingers" (as does HIV). Problem is...yea, now zinc is bound, but MMP9 is collagenase. Collagen is destroyed.

It is believed if we blocked MMP2 and MMP9...things would improve. But some researchers think the other MMPs might then kick in.

The body is trying hard to find a way to destroy this incredibly complex, multiple cell walled, houdini of a pathogen.

Sis was put on Humira. It helped with pain (reduces inflammation), but it did not stop the joint destruction.

She could not tolerate Methotrexate.

Different ways to look at this:

1. Destroy the ongoing infection by other means.

2. Put the lyme patient in total immune system shut down, then reactivate. Block NFkB and T cells. (Bb does this initially for a very short period of time.) It appears Bb NEEDS/triggers our "inappropriate" immune response, but...will Bb merely "dive for cover" during that "hostile" environment time?

3. Support the immune system. Focus on the cells that need help (CD4)

I personally think #1 is the best choice...with #3 a very close 2nd choice.

[ 30. June 2008, 06:52 PM: Message edited by: Marnie ]

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chamade
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quote:
Chamade, interesting comment. I am looking into IVIG as well. My original thought was that it would boost immune function which may not be good if autoimmunity is present. Is that true that it addresses autoimmunity as well? Is that b/c the new cells are not entrained to attack your own tissue? Good comments. Thanks
Scott, yes, it does address auto-immunity. IVIG is a treatment for "autoimmune" condition such as Chronic Inflammatory Demyelinating Neuropathy and many other ones that involve inflammation and nerves.

The reason it does not make auto-immunity worse is that the donor antibodies are not 'faulty' - in the sense that they will not mistake the borrelia proteins for the myelin sheath for instance, like you said. One of the proposed mechanisms of long term remission due to IVIG is that it can actually retrain the immune system, as the faulty antibodies are not reaching their destinations anymore and sending "bad" feedback to the immune system factory.

The other good thing about IVIG is that it contains healthy, mature antibodies which can also help fight off the bacteria/viruses will present there.

Even with all this, it is hit and miss...when it works, it really works, but a lot of people have to stay on it for extended periods of time. It's all about getting the insurance to cover it, as it's really expensive.

What are your remaining symptoms? I know you have been at it quite a while and tried all kinds of treatments...

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Why me? Well, why not me???

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Marnie
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Lauren...your LLMD suggested steroids?

Oh, NO!!!

"Steroid diabetes is a medical term referring to prolonged hyperglycemia due to glucocorticoid therapy for another medical condition. It is usually, but not always, a transient condition."

My sis zoomed to stage 3 following oral steroids.

Your doc is NOT lyme literate.

Steroids are contraindicated in lyme. PERIOD.

They can, however, in an absolute jam, be used LOCALLY, to halt lyme induced uveitis, which DOES lead to blindness. (My sis had to resort to steroid shots IN her eyes to prevent blindness...which WAS happening.)

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lymielauren28
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Haha, yep, he sure did! I'm no longer seeing him though.

I'm pretty sure I looked at him as if he'd grown two heads as soon as that suggestion came out of his mouth.

He had pulled me off all abx (even though I was much improved I'd never made it to the two month symptom free mark)

Within six weeks I was back to square one - so sick I thought I might actually die.

I went back to him and he told me that he didn't think what I was experiencing was an active infection but rather a massive over-reaction by my immune system - then he suggested the steroids to "calm things down."

I was floored! Thankfully I didn't follow his advice. I went back on abx and am improving once again but at a much slower rate than the first time.

Oh well - it's all hills and valleys!

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"The only way out is through"

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oxygenbabe
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IVIG: I use it. There are several reasons it's helpful and no it does not overstimulate the immune system. (And also, you don't need a lot imo to feel better. I use 5 grams at *most* every other week, and sometimes only 3-4 grams. You can also even get 2.5 gram bottles which I was doing for a while). First reason it helps, is all the antibodies help fight off garden variety stuff that your body will be having trouble with because it's fighting lyme. Second reason it helps is you will get other HLA types in your system and ones that do not have a huge inflammatory/autoimmune response to lyme so will temporarily quiet your symptoms. Third is that they found it's a sugar that does the IVIG work in lessening autoimmunity, and that sugar helps quiet the system.

Re: autoimmunity and persistent infection, I think it must be active infection, and they're not looking in the tissues (autopsying or biopsing) and that certain strains effectively pump out abx and persist, not just at low levels. But its true your genetics matters and if you have an autoimmune type reaction to Bb or *any* pathogen wherein you have some molecular mimicry your body has two options: 1) fight it all out and fight yourself in the meantime, maybe harm yourself irreparably. This is what happens with strep throat and rheumatic fever or 2) fight it but not wholeheartedly and let low levels persist, leading to some autoimmune problems but not all-out war on yourself. Body is trying to do the best it can with a difficult situation.

Re: MMP's, I take a very expensive supplement that helps, downregulates MMP-9, it is Atrium-Biotech's comitras, now owned by Douglass Labs. I use half a bottle a day (they come frozen). It's helpful but not curative and I'm sure there are other things I could take that I haven't found yet.

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djf2005
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i am in the same line of thinking as you guys, but im not sure i understand some things.

first, how is autoimmunity an issue is the tests are negative for it?

if one doesnt have ANA or reverse t3, etc etc, than CAN autoimmunity be an issue?

are we generally speaking by saying "autoimmune" and not true autoimmune disorders?

for me, all my tests on autoimmune are good to go, so i kind of thought that was not something i needed to be concerned with for the time being.

although, scott, i agree, bartonella is my biggest problem, and yes, my immune system is either overloaded as hell or just simply more confused than i am.

thanks for bringing this up, hopefully this thread will shed some light on what can be done.

is there any effective way to measure how adequate the immune system is working? i know some say cd-57 but mine is always in the more normal range and i am miles from normal so i have little faith in it. it also might be indicative of a very bad co infections such as myco or bart, i duno.

also, what qualifications/criteria need to be met for ivig? unless you have positive ANA or nerve damage, etc, how will any doctor ever order it?

derek

--------------------
"Experience is not what happens to you; it is what you do with what happens to you."

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chamade
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You won't really have any auto-immune markers in your blood if the cause of the autoimmunity is cellular mimicry - like it happens with certain Osp borrelia proteins.

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Why me? Well, why not me???

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ldfighter
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As far as insurance and qualifying for IVIG, small-fiber neuropathy (skin biopsy test, some neurologists are doing on Lyme patients) and low IgG subclasses are ways. It's also approved for various autoimmune conditions like CIDP as mentioned, MG, MS?,...

Incidentally the same IDSA guidelines that push "Post Lyme Syndrome" explicitly forbid IVIG (intravenous immunoglobulin) and things like cholestyramine for patients with ANY manifestation of Lyme disease including neuro.

(Sorry to get off track but I think it's important to remember that the battle with IDSA isn't just about antibiotics, it's about acknowledging the size and severity of the epidemic, and keeping solutions on the table that involve treating an infection complicated enough to have an autoimmune component among other things vs. no options for patients. Ok, off my soapbox now. [Smile] )

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ssmillik
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I think you're right. Lyme has created anti-adrenal antibodies in me, destroying my adrenal cortex and giving me Addison's disease.

While my Lyme is dormant right now, they still find these antibodies in my system.

So it could be my body is trying to find a way to eradicate the rest of the Lyme by producing these antibodies and, without the infection present, it wouldn't. The fact is, my body is finding ways to attack itself.

That's what autoimmune is. I believe you can have chronic reoccuring infection and autoimmune problems at the same time. I believe they go hand in hand.

I'm not sure that we ever truly get rid of every ounce of Lyme in our bodies. It can become dormant, but our body's immune system is still in overdrive and wants to attack itself.

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Marnie
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If you truly want to try to understand what is happening, muddle your way thru this...over and over until it "clicks".

"NO (nitric oxide) *INHIBITS* THE MATURATION OF

IL-1β AND IL-18

BY S-NITROSYLATION OF CASPASE-1"

NO works with capase -1.

"Caspase 1 has been shown to induce cell apoptosis" (cell death).

If NO is "tied up" (low in the infected cells)...then IL 1 B cells and IL -18 cells can and do mature and s-nitrosylation of capase-1 does NOT happen.

"Here we show that S-nitrosylation of caspases in human embryonic kidney (HEK)-293 cells and primary cerebrocortical neurons decreases enzyme activity and is associated with

protection from apoptosis (cell death)."

Do we want the cells in which Bb is camped out to die in huge numbers?

No...our bodies can't handle that!!!

***We need to destroy Bb while it is in the cell and at the same time, preserve the cell (help power the mitochondria).***

This looks to be HOW far infrared 880nM is working. Photon (2 of them) transfer. ADP->ATP. While at the same time, oxidizing cytochrome C (which would trigger that cell's death), but breaks Bb's hold.

Bb is USING NO...it binds to cytochrome C and a protein in Bb's cell wall binds to that combo.

So...without enough NO...IL 1 beta and IL-18 are maturing.

IL1 B looks to trigger T cells...first gamma-delta, and then alpha-beta.

But the CD3 delta T cells take a "hit" because of Bb's PKC delta inhibitor.

A signal is turned off.

This impacts the CD4 T cells which are supposed to receive the right signal from CD3 cells.

Back to NO (nitric oxide):

Protein Bb's cell wall binds to (cytochrome C + NO).

Protein + (cytochrome C and NO).

This prevents the cell in which Bb is hiding from dying....making it hard to "reach" Bb.

Keep in mind: prostate cancer cells *lack* PKCD in a capase 3 INDEPENDENT way.

Is anyone following this?

Bb has a PKC delta inhibitor. It looks to be PKC DELTA...which impacts the CD3 DELTA cells' ability to communicate with the CD4 cells.

Now...we can impact those CD3 cells (like Bb is already doing) via:

"The T cells, when activated via the T cell receptor (TCR)/CD3 complex, were suppressed functionally by minocycline,

resulting in a dose-dependent inhibition of T cell proliferation and reduction in production of IL-2, interferon-gamma (IFN-gamma) and tumour necrosis factor-alpha (TNF-alpha).

Besides an inhibition of IL-2 production, minocycline exerted its effect on T cell proliferation by induction of a decreased IL-2 responsiveness.

We showed that the chelating capacity of minocycline plays a crucial role in the inhibitory effect on T cell function, since the inhibitory effect on T cell proliferation could be annulled by addition of exogenous Ca2+.

However, minocycline did not markedly influence the typical TCR/CD3-induced intracellular Ca2+ mobilization.

Taken together, the results clearly indicate that minocycline has immunomodulating effects on human T cells.

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1553388

T cells turned off...all that's left is mature beta cells (IL1 B) due to ***insufficient NO*** to ***prevent*** the maturation of the Beta cells.

Now...more about IL1 B:

"The induction of cyclooxygenase-2 (PTGS2/COX2) by this cytokine (IL1 B) in the central nervous system (CNS) is found to contribute to inflammatory pain hypersensitivity."

IL1 B triggers COX-2.

COX-2 is up. COX-3 and COX-1 are off.

Far infrared looks to activate COX-1.

Maybe I should bring up an old file re: the benefits of SOME TNF alpha?

"Human V gamma 2 V delta 2T Cells Produce IFN gamma and TNF alpha with an On/Off/On Cycling Pattern in Response to Live Bacterial Products."

We need IFN gamma AND TNF alpha.

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djf2005
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ldfighter-

thanks for explaining how ivig can sometimes be approved. still, how does one go about approaching a neurologist asking for it? i fear bringing up the word lyme would be a big mistake. there has to be soemthing else they look for, possibly one of the things you mention in order for them to consider you as a candidate. are there are other things a LD patient can call a neuro for for an ivig appt and ask for?

chamade- so it is possible to have autoimmune issues if its cellular mimicry... which is what?
you say it happens with borrelia proteins, what about co infections? what if co infections are the dominant problem?


and marnie- thanks for posting that, but i could read it 1000 times and not understand it. im a very laymen terms kind of guy, that makes zero sense to me. [Smile]
maybe my wife will be able to make sense of it. she is the book smart savvy one. and her brain is also not neuro lyme infected! [Smile]

thanks

derek

--------------------
"Experience is not what happens to you; it is what you do with what happens to you."

[email protected]

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AliG
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Caffeine?


[hi]
Ali

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

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Marnie
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Not caffeine alone, but...


http://www.jimmunol.org/cgi/content/abstract/169/8/4262

http://www.andrologyjournal.org/cgi/content/abstract/23/6/783

http://cat.inist.fr/?aModele=afficheN&cpsidt=13432868

http://www.ist-world.org/ResultPublicationDetails.aspx?ResultPublicationId=b99e79993bbc427d8b0c7a93ab56a755

Watch for alkaline phosphatase!!!

"Alkaline phosphatase is a hydrolase enzyme responsible for *removing phosphate groups* from many types of molecules, including nucleotides, proteins, and alkaloids. The process of removing the phosphate group is called dephosphorylation."

"A tyrosine kinase is an enzyme that can transfer a phosphate group *FROM* ATP to a tyrosine residue in a protein.

``PKCD INHIBITS... tyrosine kinase activation of the STAT signaling pathway.''

PKCD *inhibitor* -> no tyrosine kinase phosphate transfer FROM ATP -> inactivation of STAT pathway?

"On the basis of these observations, it can be concluded that tissue nonspecific alkaline phosphatase,

acting as a phosphomonoesterase, could hydrolyze free phosphate esters such as pyrophosphate

and ATP,

while as phosphodiesterase could contribute, together with plasma cell membrane glycoprotein-1, in the production of pyrophosphate from ATP."

WHOA.

Pyrophosphate = PPi = delta.

photon transfer.

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achey
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I met the dx criteria for CIDP 3 yrs ago and fought my insurance co for 21 months to get ivig approved. I have been taking 40gms / week with 1 liter d5w chaser.

I am continuing to improve and learning new ways to rehab my neuro pathways. I did adaptive ski lessons this winter and improved my balance and reading comprehension.

I'm researching neurocognitive rehab and biofeedback now and looking for a practioner to work with.

Starting at the end of this months we reduce my dose to 3 weeks on one week off.

I had small fiber nerve biopsies and EMG and nerve conduction studies done in addition to a neuro exam. I showed a positive babinski response and not peripheral reflexes early on. I also flunked every other part of the exam, and was having continuous seizures from lack of myelination.

I have occasional seizures now if I overdo with healing and with hormonal cycles. Other things keep improving on a two steps forward one back manner.

I have also done IMT, homeopathy, herbals, myer's cocktails, chelation, and colloidal metals, and psychotherapy to keep everything in balance.

And I laugh , celebrate, eat gluten and refined sugar free, exercise nicely.

I hope something here helps someone else.

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Vermont_Lymie
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Interesting article on research to reduce autoimmune diseases and symptoms today in the NYTimes -- an approach that some may not be willing to take:

http://www.nytimes.com/2008/07/01/health/research/01prof.html

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