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Supplement Regime For Chronic Autoimmune Disease ?


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#31 alterego

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Posted 01 July 2008 - 08:58 PM

Hi Guys been a while..needed to update regimen.

.....

I would be a bit conservative with the supplementation. My (not very severe but quite noticeable) rheumatoid arthritis is my personal sensor to what helps and what does not.
Although the reaction on various substances depend a lot on personal constitution, I can say that supplements that are generally used for immune enhancement or stimulant effects are not good! Including Resveratrol, which was very bad in my case. If you can't tell the effect by increased or decreased pain it is eminent to use blood-tests frequently. And even if you feel decreased pain, if applicable, you should also. And to introduce substances one-by-one with long intervals of a few weeks to be able to judge the change.

In my case, the following worked out positive (not in particular order):
- Niacinamide (see PM)
- Sylimarin
- D3
- Arthro-Pro (See LEF for details)
- N-Acetyl-Cysteine (approx. 600mg each 3 days)
- Wobenzyme
- Curcumin (as a normal spice in my food 3 times a week)

My advice is to be conservative, before you know it you are taking something that's counterproductive. In my case not to bad, but in your case probably a little-bit more critical....
If I had to choose just one, e.g. to start with, I would opt for high dose niacinamide.
And, take blood tests for verification, discuss everything with your doctor, don't screw yourself up!
Discussing supplementation with your treating doctor might be, uhm, challenging, but my experience is that if you use good research papers to back yourself up, you will likely get through to him / her.

Edited by alterego, 01 July 2008 - 09:25 PM.


#32 youandme

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Posted 02 July 2008 - 09:50 AM

Hi Guys been a while..needed to update regimen.

.....

I would be a bit conservative with the supplementation. My (not very severe but quite noticeable) rheumatoid arthritis is my personal sensor to what helps and what does not.
Although the reaction on various substances depend a lot on personal constitution, I can say that supplements that are generally used for immune enhancement or stimulant effects are not good! Including Resveratrol, which was very bad in my case. If you can't tell the effect by increased or decreased pain it is eminent to use blood-tests frequently. And even if you feel decreased pain, if applicable, you should also. And to introduce substances one-by-one with long intervals of a few weeks to be able to judge the change.

In my case, the following worked out positive (not in particular order):
- Niacinamide (see PM)
- Sylimarin
- D3
- Arthro-Pro (See LEF for details)
- N-Acetyl-Cysteine (approx. 600mg each 3 days)
- Wobenzyme
- Curcumin (as a normal spice in my food 3 times a week)

My advice is to be conservative, before you know it you are taking something that's counterproductive. In my case not to bad, but in your case probably a little-bit more critical....
If I had to choose just one, e.g. to start with, I would opt for high dose niacinamide.
And, take blood tests for verification, discuss everything with your doctor, don't screw yourself up!
Discussing supplementation with your treating doctor might be, uhm, challenging, but my experience is that if you use good research papers to back yourself up, you will likely get through to him / her.


Great advice 'alterego'

Thanks for the info..I agree with you ..one supp at a time...and be conscious of changes each makes.
Im looking into 'niacinamide' after your post
Are there any contra's known to high dose niacinamide ?
I might after trying it alone.. combine with Tryptophan.

Cheers

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#33 youandme

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Posted 02 July 2008 - 10:50 AM

http://www.ncbi.nlm..../pubmed/1535346


Another positive this time for using combo tetracycline and niacinamide in dogs suffering many forms of Autoimmune Disease.

Makes me wonder why clinical trials have not followed in humans...though it wont be the first study that warrants a follow up....thymus for use with Primary Biliary Cirrhosis is another.

http://www.ncbi.nlm..../pubmed/1292217

#34 alterego

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Posted 02 July 2008 - 06:03 PM

Stay away from the tryptophan, not good in combination with auto-immune issues.

#35 Mixter

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Posted 02 July 2008 - 08:35 PM

Tetracycline and niacinamide... sounds like a really bad idea with elevated liver parameters of unclear origin though... :(

A wild speculation: an uncommon herpes-family virus infection, or just something like EBV and an immune
overreaction might have been a possible trigger. Regardless, you now have multiple autoimmune disease...
you should try DHEA and could possibly investigate low-dose methotrexate with your physician.

If, in the future, autoimmunity actively progresses, and something life-threatening is involved, e.g.
if they find autoimmunity to liver cells as an explanation for the elevated enzymes... then you must
consider something like low dose methotrexate as first line treatment, possibly with a cortisol
combo when necessary.

If this kind of approach doesn't stabilize a threatening condition, "rebooting" the immune system
with Rituximab (=killing off most trained B cells) is an option, but with similar infection and temporary
blood disorder risks as chemotherapy: http://www.mskreport...?articleID=1582 You'd
want to go somewhere like Mayo clinic, where they are open for that. But only consider IF life-threatening...

As long as it isn't near life threatening, I would do what was recommended: vitamin D, liver support
(silymarin), antioxidants, anti-inflammatories. Getting NFK-b and TNF-a way down by supplementation
is always the first idea for autoimmune problems IMO... You should investigate GLA and linoleic acid and
their relation to autoimmunity by learning how multiple sclerosis (=one of the worst autoimmunity diseases)
is treated with that, as the approach can be applied to moduleate other autoimmune diseases:

http://neurology.hea...s-nutrition.php

Edited by mixter, 02 July 2008 - 08:38 PM.


#36 krillin

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Posted 02 July 2008 - 11:19 PM

Are there any contra's known to high dose niacinamide ?

It soaks up methyl groups when it's metabolized, so stack it with TMG. (Their molecular weights are very close, so you can just go with equal masses.)

Med Hypotheses. 2000 Sep;55(3):189-94.
Co-administration of equimolar doses of betaine may alleviate the hepatotoxic risk associated with niacin therapy.
McCarty MF.
Pantox Laboratories, San Diego, California 92109, USA.

High-dose niacin has versatile and substantial efficacy for the treatment of hyperlipidemias, but its utility is compromised by various side effects, the most serious of which is liver damage. It is proposed that this hepatotoxicity reflects the high demand for methyl groups imposed by niacin catabolism, leading to a reduction in hepatic levels of S-adenosylmethionine (SAM). Depletion of the hepatic SAM pool has likewise been shown to mediate, at least in part, the hepatotoxic effects of ethanol, methotrexate, and niacinamide. If niacin does indeed decrease SAM, a likely consequence would be a counterproductive elevation of plasma homocysteine. Conceivably, methyl group deficiency, by altering membrane properties of skeletal muscle, also contributes to niacin-induced insulin resistance. Concurrent betaine supplementation - preferably administered as a complex with equimolar amounts of niacin - may represent the most cost-effective way to prevent niacin-mediated depletion of SAM and thus avoid hepatotoxicity (and possibly other adverse effects) while controlling homocysteine. Betaine also merits evaluation as an adjuvant to methotrexate and niacinamide therapies.

PMID: 10985907

#37 youandme

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Posted 03 July 2008 - 08:37 AM

Tetracycline and niacinamide... sounds like a really bad idea with elevated liver parameters of unclear origin though... :(

A wild speculation: an uncommon herpes-family virus infection, or just something like EBV and an immune
overreaction might have been a possible trigger. Regardless, you now have multiple autoimmune disease...
you should try DHEA and could possibly investigate low-dose methotrexate with your physician.

If, in the future, autoimmunity actively progresses, and something life-threatening is involved, e.g.
if they find autoimmunity to liver cells as an explanation for the elevated enzymes... then you must
consider something like low dose methotrexate as first line treatment, possibly with a cortisol
combo when necessary.

If this kind of approach doesn't stabilize a threatening condition, "rebooting" the immune system
with Rituximab (=killing off most trained B cells) is an option, but with similar infection and temporary
blood disorder risks as chemotherapy: http://www.mskreport...?articleID=1582 You'd
want to go somewhere like Mayo clinic, where they are open for that. But only consider IF life-threatening...

As long as it isn't near life threatening, I would do what was recommended: vitamin D, liver support
(silymarin), antioxidants, anti-inflammatories. Getting NFK-b and TNF-a way down by supplementation
is always the first idea for autoimmune problems IMO... You should investigate GLA and linoleic acid and
their relation to autoimmunity by learning how multiple sclerosis (=one of the worst autoimmunity diseases)
is treated with that, as the approach can be applied to moduleate other autoimmune diseases:

http://neurology.hea...s-nutrition.php


Hi Mixter

Yeah my triggers are ....Camplyobacter food poisoning and Severe Chicken Pox..couple those with a family history and having the genotype HLA-B27 then you have some of the why. 1 in 7 people are HLA-B27 btw not everyone who has it gets sick.

Yeah Ive read up on Niacinimide and Liver toxicity...certainly got to be careful..its a bit of a pain..the situation ...the unknoewn with the liver. However anything I do will be run by the Doc.
Methotrexate even low dose can be toxic...pretty much anything even antibiotics can affect some people...so yeah anything would be monitored closly.

Yeah Im on DHEA 25mg (sorry didnt mention that as its prescription here)

The link you provided for B-cell depletion treatment although used for life threatening circumstances is a valid treatment...lupus is the cousin of Sjogrens..
Ive an issue with this treatment only being used for life threatening AI diseases as for some even though they are not life threatening the symptoms can destroy quality of life to the point many take their own lifes.
We have to remember that currently NO treatments of any kind that are reasonably effective against Sjogrens and many other AI's exist.

Without them progression of disease occurs unabated. Then the argument is why not do the B-Cell Depletion when your healthy enough to recover.

personally as you can tell I would rather be given the oppurtunity of the option of such a treatment.
This is a similar treatment process to stem cell transplant which have been in existance for 18 or more years and have had much success...simply put the immune system is destroyed by chemo type drugs and then stem cells from an earlier harvest or from a close relative are reintroduced ...the idea is that the stem cells grow to recognise all the organs as friendly once again.

In affect we are wiping out cell memory ..the memory of Auoimmune disease has gone.
Now one issue is the risk of infection however...if you are healthier rather than sicker you have more chance to survive the process.
The other issue is that sometimes the process does not work..now they dont know why..is it that some pathogen is still in the body to cause the autoimmunity.. ?! who knows. But a tleast the treatmen may have some chance of complete or at least partial remission.

I would personally go for the treatment options without a second thought...the only problem ..no such treatments are available in Australia...

Thanks for bringing up this subject ..as at the same time as expressing Im getting the word out about Autoimmune Disease and how it needs any treatment options so badly. (80 million + suffer from AI diseases..probably many more)


Cheers

#38 youandme

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Posted 03 July 2008 - 09:11 AM

Krillin
thanks for that study !...wow...the thing is I have gastric Parietal Cell Antibodies...which in effect reduces stomach acid !
So supplementing with Betaine sounds like a good idea in any case.

So to recap.

Niacin type supplement, taken along with Betaine in equal doses should reduce the deficiency of S-adenosylmethionine (SAM) (as opposed to Naicin supplementation alone) and in thus doing so will reduce hepatic toxicity from Niacin.

If I take SAM-e supps would this not help as well the effects of Niacin on S-adenosylmethionine (SAM) as well ?

Yes I like the sound of this...however one can only stomach so much acid ! 3-6 grams of Niacin supplementation is suggested in the paper posted by 'alterego'..I doubt if one could stomach so much betaine ?! perhaps the way would be to do multiple supps during the day.

Krillin what do you think about thymus extract still ?

Note to myself : Must get my story straight when I make my final supp suggestions to the Doc.

Cheers







Are there any contra's known to high dose niacinamide ?

It soaks up methyl groups when it's metabolized, so stack it with TMG. (Their molecular weights are very close, so you can just go with equal masses.)

Med Hypotheses. 2000 Sep;55(3):189-94.
Co-administration of equimolar doses of betaine may alleviate the hepatotoxic risk associated with niacin therapy.
McCarty MF.
Pantox Laboratories, San Diego, California 92109, USA.

High-dose niacin has versatile and substantial efficacy for the treatment of hyperlipidemias, but its utility is compromised by various side effects, the most serious of which is liver damage. It is proposed that this hepatotoxicity reflects the high demand for methyl groups imposed by niacin catabolism, leading to a reduction in hepatic levels of S-adenosylmethionine (SAM). Depletion of the hepatic SAM pool has likewise been shown to mediate, at least in part, the hepatotoxic effects of ethanol, methotrexate, and niacinamide. If niacin does indeed decrease SAM, a likely consequence would be a counterproductive elevation of plasma homocysteine. Conceivably, methyl group deficiency, by altering membrane properties of skeletal muscle, also contributes to niacin-induced insulin resistance. Concurrent betaine supplementation - preferably administered as a complex with equimolar amounts of niacin - may represent the most cost-effective way to prevent niacin-mediated depletion of SAM and thus avoid hepatotoxicity (and possibly other adverse effects) while controlling homocysteine. Betaine also merits evaluation as an adjuvant to methotrexate and niacinamide therapies.

PMID: 10985907


Edited by youandme, 03 July 2008 - 09:46 AM.


#39 youandme

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Posted 03 July 2008 - 09:47 AM

Stay away from the tryptophan, not good in combination with auto-immune issues.



Thanks alterego i will look into those chapters.

All the best

#40 youandme

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Posted 03 July 2008 - 09:51 AM

Alterego

Found and read that chapter on Tryptophan as a no no supp for autoimmune ..cheers.

One thing I noticed it made the distinction that if it is really needed taking Tryptophan at night is advised.

The paper is very interesting and I would certainly love to talk to the author...wonder if I could trace him : )

I would like to talk to him about the metabolite that is created from tryptophan that i mentioned that is being looked at for autoimmune disease.. I wonder if he was aware of that...

Thanks again

btw I had taken Tryptophan for a couple of weeks (1 x 500mg) at night..I initally felt I had a better sleep but then the effect wore off..it could have been placebo I guess..

However I have not retaken it..and after reading the paper will probably not..

Edited by youandme, 03 July 2008 - 09:54 AM.


#41 krillin

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Posted 03 July 2008 - 11:49 PM

Krillin
thanks for that study !...wow...the thing is I have gastric Parietal Cell Antibodies...which in effect reduces stomach acid !
So supplementing with Betaine sounds like a good idea in any case.

If I take SAM-e supps would this not help as well the effects of Niacin on S-adenosylmethionine (SAM) as well ?

Krillin what do you think about thymus extract still ?

Make sure to get betaine HCl if you want acid supplementation. Betaine usually means the free base. The only way to be sure that your SAMe alone is enough is to test homocysteine.

I mentioned thymic protein in the spirit of brainstorming. You'll either have to locate someone who's tried it for your purpose or be the guinea pig yourself.

#42 youandme

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Posted 04 July 2008 - 10:18 AM

Thanks Krillin, I know I am a guniea pig ; ) (I spose we all here in a way)... I do actually wish I was a mouse as they have all the cures .. : )

Seriously though thanks for your suggestions and pointers.
I will be running options by the Doc next visit...if I take things one at a time...I should be right...Im very closely monitored as it is with bloods every 2 weeks.
I will be supping the following straight away.

Omega 3
SAM-e (400mg initially..started)
B12 5000mcg
Betaine HCL (on order)

To be discussed with Doc..
Thymus Extract
Niacinimide

The above are really to help with disease...however I would like to find a supp that may specifically help with fatigue and add energy..

Vitamin D3 is a candidate ...however I will get my 'D' levels checked beforehand ..just in case the Marshall Protocol makes sense or not for me.

Anyone got ideas for any other supps for fatigue fighting/energy boosting ?

Cheers again



Krillin
thanks for that study !...wow...the thing is I have gastric Parietal Cell Antibodies...which in effect reduces stomach acid !
So supplementing with Betaine sounds like a good idea in any case.

If I take SAM-e supps would this not help as well the effects of Niacin on S-adenosylmethionine (SAM) as well ?

Krillin what do you think about thymus extract still ?

Make sure to get betaine HCl if you want acid supplementation. Betaine usually means the free base. The only way to be sure that your SAMe alone is enough is to test homocysteine.

I mentioned thymic protein in the spirit of brainstorming. You'll either have to locate someone who's tried it for your purpose or be the guinea pig yourself.



Edited by youandme, 04 July 2008 - 10:20 AM.


#43 alterego

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Posted 04 July 2008 - 06:10 PM

Anyone got ideas for any other supps for fatigue fighting/energy boosting ?

I would be careful with that. ALCAR/ALA, piracetam/choline, etc are not good in my case. What I do on day's that I need some extra attention span is one capsule each of ortho-mind and LEF cognitex. If I continue to take that for several day's, my RA symptoms increase a bit.
Another strange effect is that huperzine-A once in a while decreases, but if taken longer than 3 day's increases symptoms severely.

#44 youandme

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Posted 01 January 2009 - 03:44 AM

Need help updating My Regime after this post...but I wanted first to review my illnesses and also the state of Research Understanding and Pipeline Treatment for Autoimmunity.

WARNING A LONGGGGGGGGGGGG POST !?



Well Ive got at a few things going on so to speak...Sjogrens type symptoms, Parietal Cell Antobodies, Hashimoto's, Arthritis (AS & HLA-B27+)
and also unexplained Hepatitis of unknown etiology.(personally I think it is Seronegative -Primary Biliary Cirrhosis)

I also have Neuropathies, twitching, spams, numbness, pain allover..starting to lose fine motor in right hand (cramps on release of objects)...

So perhaps CNS but also perhaps Peripheral issues.

Important to note for everyone...some of these diagnosis are confirmed thru bloods (antibodies seen) but others like the Neuropathy, Sjogrens, and Hepatitis have no reason to be there according to the current diagnostics !!!!!!!
And believe me Ive had them all...(cept a Lyme Test)

So if you ever get sick and they cant find out why... don't be surprised.
They just dont have tests that are either 100% or cover every variation.

Autoimmunity 100+ diseases and counting:

it is in my opinion one of the most contentious issues of our time...so the immune system with seemingly unending signaling complexities.

Put immunology Researchers into a room and see them all disagree.
Even how or what is Autoimmunity...basic questions unanswered..even with the best computer models..still no answers.

What I can vouch for is...genetics...your family is what makes you... their genetics mixed together is what you end up with...it is now proven that twins DO get AI diseases...sometimes takes 30 years longer for the other twin to get sick but they do eventually... and sets of genes makes you more likely to get these diseases.

Now what actually triggers the diseases into being is another thing...for me it was a set of Pathogens.... 'Camplyobacter Jeujuni' and then closely followed by severe 'Zoster Virus'...something changed....shifted in my state...transcribing into disease symptoms.

Now 'Trev' Marshall of 'MP' fame talks about pathogens getting into cells..so small no one can see them as the cause for this switch on of TH1 sustained response...

the question for me is ...are the pathogens still in me causing my immune system to attack itself...or are they gone?...more questions...

Did they either look like my genes for instance (HLA-B27+) while they were there confusing the immune system into a permanent state of Autoimmunity..or did the pathogens while they were there switch on some genes that look like pathogens to the immune system memory.....or did genetic manipulation by these viruses cause the immune system to be confused...or is it simply that the immune system is aging and its assembly line gets a bit rusty, turning out faulty immune cells...

...or as 'Marshall' reckons they invaded our cells...so many different ideas...yet none have been proven/disproven..

Perhaps a clue..
Resetting the Immune system (blowing it away with drugs) repopulating with Stem Cells...growing a new Immune system has had some success...however it is not 100%...remission of partial symptoms is to me puzzling

This suggests to me that perhaps either the pathogen is still in you...or well what else could it be...my immunologist says that its because ones genes are still the same after resetting the immune system..but I dont buy it..so what if they are.
I was not born with these diseases..only started 3 years ago...after Pathogens attacked me..soooo....once reset you should be right if you can avoid the Pathogen/Environmental triggers for another 40 years say..
as the new Immune system grows it should recognise the state it grows in as OK not pathogen...yet some who have this ultimate treatment do not benefit as much as they should in theory...why ?

So perhaps the Pathogens are still in you and are popping their heads out of cells or mutating to look slightly different yet close enough to our own cells...in this way it sounds like Im saying Marshall could be right ....it would have to be a pathogen that is active..

Or perhaps as we age and the process of Autoimmunity begins it sets of a cascade of constant gene changes...that the immune system cannot get a stable fix on...

Autoimmune Therapies:

Current:
B-Cell Depletion, DMARD's...obliterate most of the immune system...like using Agent Orange to stop weeds in your garden..it works but kills most everything else around....in short current therapies are few...and cause many other symptoms...and in some are the cause of death.

If you didnt know...there has never ever been a treatment that has cured one Autoimmune Patient of any Autoimmune Disease...period ! Remission is as close as they have got...the process is still there.

btw this includes the 'Marshall Protocol'

New Ideas:
Some new therapy directions are to try and selectively rebalance the TH1 to a more balanced immune system ... imbetween TH1 & TH2 by increasing/inducing T-regulatory cells.

In inflamed tissue...biopsies reveal a cluster of T-regulatory cells..so the immune system is trying to do its job at regulating but something is making them ineffective..
having these clusters of T-reg cells is part of the reason why Autoimmune Diseased people are many more times more likely to get cancer in those inflamed organs.

Then they talk about effective and non effective (or defective) T-Regulatory cells. perhaps the Autoimmune diseased patient has now ineffective T-regs to this particular TH1 issue..unable to stop the sustained inflammation after the pathogen has gone...perhaps the older we get the less effective they can become...perhaps again genetics..perhaps something has changed with the creation of T-regs...the assembly line has faults.

It is now documented that the fetus uses T-regs at least partially to avoid immune wars with mum...this link below especially interesting regarding the begnnings of our own immune development for autoimmunity

http://www.punchng.c...t20081214444917

Thus the T-Reg therapy camps are looking at ways of inducing effective T-reg's
either as a master immune volume control..or more specific targets.


"dnaJP1" http://www.tucsoncit...tpage/77417.php


or specific Antigen targeted created crafted T-regs...

such as MultiVax
http://www.fiercebio...oney/2008-12-09

Other Options
Another known has 'Tranilast' N-(3',4'-dimethoxycinnamonyl) anthranilic acid...its exact action is not known...its a synthetic Metabolite from Tryptophan.

http://www.nuonthera..._sclerosis.html

Now there are others ..but that this is the limit of my research so far..

So if anyones got some direction for new therapies which Ive missed please let me know !?


HomeBrew Inducement of T-regs;
Well a lot of people already take Probiotics...aka yoghurt..
Some of the strains have been found to induce T-regs...Bifodus infantis...as well Lactobacillus Reuteri...and some other strains....no one really knows what interactions do take place between the zillions of Bacteria and strains in the gut though.

UVB Induces Tregs..but of course also skin cancer.

DHEA Metabolite induces T-regs...but also of course other effects.

Tryptophan Metabolite induces T-Regs.(Tranilast)

Statins - Induce T-regs and some nasty side effects as well

Parasites...helminths induce T-regs (worms)

CAFFEINE
btw i mentioned earlier in this thread that Caffeine induces T-regs but it does NOT..in fact it suppresses T-reg activity...paradoxically it reduces TNF-Alpha.



I have missed some treatments i know...let me know please to add to the list.

#45 youandme

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Posted 01 January 2009 - 04:53 AM

Funding For New Treatments:

Hmmm yes what Funding.
Call me skeptical but when it comes to funding, Pharma's are companies looking for profit.
Funding what actually could be a long term remission would not be in their interest.

I want to share with you a Video Interview with one of the current groundbreakers in Immunology
Dr Denise Faustman..a lady who IS prepared to put her Career on the line in pursuit of a goal for her patients...she has a few firsts to her credit..

she has manged to eliminate Diabetes Type 1 from NOD Mice...
and also found that in doing so the Pancreas can regenerate to produce Insulin.

Her theories had been dismissed and her claims also until 7 International labs have managed to have their own Diabetes Healthy Mice Running around their labs.

The thing is her treatment is different..not T-reg Therapy..rather an attempt to actually clear the disease. its now in Phase 1. All PRIVATELY FUNDED...she openly admits that the Pharma's do not want to know her treatment..as if it works they will be out of the Autoimmune Business...which btw is BIG business...if you browse business related websites you will see talk of Market Growth in the Autoimmune sector...what this is also saying is that there are a lot of sick Autoimmune related people and the number is growing...I think it is an epidemic.

Here's the link

View on Vimeo.




it poses the question..will any of the T-reg therapies get up...who is going to pay for the trials....

My opinion is Governments should Pay take the lead...create a levy for development of Cures not just expensive symptom helpers...the WHO should pull their weight.
They would part fund and pay for the manufacture of the drugs..keep the pharma's going as we do need them.

Ive read many stories where promising drugs have been dropped..with no explanation...perhaps they were too good.

#46 youandme

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Posted 01 January 2009 - 05:21 AM

I think this brings me back now to what supps to take for the next 3 months.

Neuropathies....spasms,tingling pain, twitching..are indicative of help needed in that area.

People please can you advise with any supps to help prevent further issues, and help current issues.
Nerve health is very much an area i know little about.

thanks in advance


my new stack Ive been lining up after researching this and other info hubs is a as follows......

Thymus Extract - Krillin mentioned this a while back..I revisit it as the Literature is out there that says it can help with Autoimmune Conditions...the 'lit' though is old...and for some reason no one carried it on...the only thing perhaps could be is BSE scares ?! as it is Bovine sourced product perhaps?!
no one talks about using it much any more.

Niacin - My Cholesterol LDL is up...Ive no idea why (I eat very healthy) so Im back on the wagon to bring it down...I will trial this to see if I can tolerate the flush

Betaine HCL - On order for lack of stomach acid due to Parietal Cell Antibodies
R-ALA - I think this is still the king isnt it ?
Ubiquinol or CoQ10 - Which is best ?
Boswellia - Ive ordered and will try for ligament/arthritis pains
Magnesium Orotate - Heard its the best form is it ?
Vitamin C - Have not taken any for ages..but eat heaps of Fruit..so not sure if I should add
Quercetin - inflammation reducer perhaps ?
Benfotiamine - What does this do...most people are using it I noticed.?
Pyconegel - another I dont know much about and a lot of people are taking.?
Dr Veghese - already ordered Liver Tonic - Has NAC in it so wont add that.
Vitamin D3 - Will get some if after I get my blood D results back
Teavigo - EGCG 90%

Probiotics:
Natren Lifestart 2 - Bifodum infantis - T-reg inducer

in addition....
Food Changes
Be getting me some Coconut !
Sea Salt..my Sodium and Chloride are low for some reason.

other possibles
Try LDN again ?
Try Acetyl L Carnitine ? mitrochondria repair ?
DHEA ?
Rutin - same as Psyconegel ?
Bilberry - same as Psyconegel ?
Cranberry - same as Psyconegel ?

I realised that Caffeine (Coffee, Tea, Chocolate) is short term benefit ..(reducing TNF alpha) but long term pain (reducing effectiveness of T Regs)

If I could Id probably get me some Tranilast..but it is not currently available here.

any help with dosages would also be MOST appreciated.

Cheers

Edited by youandme, 01 January 2009 - 05:48 AM.


#47 youandme

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Posted 13 February 2009 - 10:35 AM

Currently Autoimmune Disease=Cause Unknown.

Then how about this...
Persistent measles virus genome in autoimmune chronic active hepatitis: Cause or coincidence?

http://www3.intersci...l...=1&SRETRY=0

Its just an abstract...however you hear it time after time that people get Autoimmune Diseases after some bad infection.

For me it was Camplyobacter and then Zoster Varicella..!

I like the way the study is looking for the measles genome...perhaps we really should be quantifying what genomes are in all Autoimmune Patients and see what we find !..we can see if any correlations can be seen for each genome found and Autoimmune Symptoms suffered.

I also wonder if Anti-Virals could then be seen as an option to clear out the offending genome..?!

#48 FunkOdyssey

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Posted 13 February 2009 - 02:46 PM

Well Ive got at a few things going on so to speak...Sjogrens type symptoms, Parietal Cell Antobodies, Hashimoto's, Arthritis (AS & HLA-B27+)
and also unexplained Hepatitis of unknown etiology.(personally I think it is Seronegative -Primary Biliary Cirrhosis)

I also have Neuropathies, twitching, spams, numbness, pain allover..starting to lose fine motor in right hand (cramps on release of objects)...


I am 99.5% sure there is a chronic infection responsible for your symptoms and I am 98.3% sure it is Lyme. This multi-system autoimmunity + hepatitis + pain + neurological presentation SCREAMS lyme, I don't care what crap test you've had to rule it out. Please do not accept that [falsely] negative result, the sickest patients are often negative.

Please please please find and see a Lyme-literate physician in your area for proper diagnosis before you sustain further permanent damage. An empiric trial of doctor-supervised antibiotic therapy is in order.

I don't know of any virus that can cause all of those disorders and symptoms. On the other hand, the single organism borrelia burgdorferi can produce ALL of those problems with its flagella tied behind its back.

If you accept the mainstream autoimmune paradigm advanced by rheumatologists, and you treat it as such, you are going to experience a steady decline of health and function until you die. The alternative I am suggesting (treatable chronic infection) is your only hope of curing your diverse array of problems and recovering health.

Edited by FunkOdyssey, 13 February 2009 - 04:17 PM.


#49 FunkOdyssey

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Posted 13 February 2009 - 04:21 PM

Supplement Regime for Chronic Autoimmune Disease:

Minocycline
Doxycycline
Tetracycline
Clarithromycin
Azithromycin
Roxithromycin
Hydroxychloroquine
Atovaquone
Metronidazole
Tinidazole
Sulfamethoxazole and Trimethoprim
Rifampicin
Amoxicillin
IM Penicillin G Benzathine
IV Ceftriaxone
Cefuroxime Axetil

#50 rwac

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Posted 13 February 2009 - 04:33 PM

Funk,

Is that a comprehensive list ? Good to know. ;o)

Supplement Regime for Chronic Autoimmune Disease:

Minocycline
Doxycycline
Tetracycline
Clarithromycin
Azithromycin
Roxithromycin
Hydroxychloroquine
Atovaquone
Metronidazole
Tinidazole
Sulfamethoxazole and Trimethoprim
Rifampicin
Amoxicillin
IM Penicillin G Benzathine
IV Ceftriaxone
Cefuroxime Axetil



#51 FunkOdyssey

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Posted 13 February 2009 - 05:01 PM

That includes all of the antibiotics I would personally be willing to use with high benefit/risk ratios. The quinolones should also be on that list but I feel they are too toxic when several of the other drugs listed can cover its spectrum of antimicrobial activty.

#52 nameless

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Posted 13 February 2009 - 05:56 PM

This multi-system autoimmunity + hepatitis + pain + neurological presentation SCREAMS lyme, I don't care what crap test you've had to rule it out. Please do not accept that [falsely] negative result, the sickest patients are often negative.

This may be a dumb question, but what are reliable lyme tests? I just assumed a regular Western blot (or whatever lyme test is normally given) was accurate.

#53 rwac

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Posted 13 February 2009 - 07:21 PM

This multi-system autoimmunity + hepatitis + pain + neurological presentation SCREAMS lyme, I don't care what crap test you've had to rule it out. Please do not accept that [falsely] negative result, the sickest patients are often negative.

This may be a dumb question, but what are reliable lyme tests? I just assumed a regular Western blot (or whatever lyme test is normally given) was accurate.


That would be the IgG & IgM Western Blot from IGeneX. They are the most reliable tests you'll find.
But they are often negative/inconclusive for chronic Lyme.
(The immune system is too tired to mount a response to Lyme)

There are secondary tests like CD57, C4a, etc
The most reliable test is probably a herx reaction to antibiotics.

#54 FunkOdyssey

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Posted 13 February 2009 - 07:34 PM

Yes, in all honesty the best test is response to an empiric trial of treatment. These drugs are collectively much safer than the alternatives that rheumatologists will offer.

For lab testing, western blot by CDC criteria is notoriously insensitive. And forget the ELISA, that is much worse, which is why it is ridiculous that the ELISA is used as the screening test and the western blot is only ordered if the ELISA is positive. The more sensitive test should be used for screening. Unfortunately both tests rely on an antibody response from the immune system that may be impaired or dysfunctional as a result of the very infection you are testing for. So the name of the game with Lyme testing is unreliability. However, at least specificity is very good (few false positives).

This study indicates sensitivity of 47% for IgM or IgG western blot by CDC criteria (76% combined sensitivity). For Igenex criteria, sensitivity is 68% for IgG and 81% for IgM (89% combined sensitivity).

Comparison of specificity and sensitivity of IGeneX Lyme Western Blots using IGeneX criteria and CDC criteria for a positive Western Blot

Edited by FunkOdyssey, 13 February 2009 - 07:36 PM.


#55 nameless

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Posted 13 February 2009 - 08:26 PM

Thanks for the responses. I didn't realize Lyme testing was so inaccurate. I looked up my old tests, and see I was tested by both Elisa and Western Blot at various times -- both negative. I remember about 8 years ago I had a slight positive on one of those tests (don't recall which one), but my doctor did what he called a 'fancier Lyme test', which came back negative. I expect it was Western Blot he did that second time. He also said it's quite common to have false positives too.

I suppose the only problem with an antibiotic trial is possible resistance (or side effects), but once everything else is ruled out, it seems like it would make sense.

My brother-in-law had bad Lyme at one time and was hospitalized for it. He said they did intravenous antibiotics (I think). And they did a spinal tap for testing. *winces* I guess a spinal tap would be good for bad cases or something... can't see it being used for normal testing. Are there any new lyme tests coming out or planned soon that are more accurate? Tests that don't involve spines...

#56 FunkOdyssey

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Posted 13 February 2009 - 08:31 PM

False positives are not common. Specificity is between 99-100% for CDC criteria western blot and over 96% for Igenex criteria. Many doctors may *think* its a false positive if the patient is relatively asymptomatic, but that does not mean you are not infected with the pathogen. It may never manifest itself as typical Lyme if your immune system is strong enough, it may just silently produce atherosclerosis and alzheimer's as you get older. That's one reason I make alot of noise about this chronic infection thing, because you have to consider more than your diet and your exercise and your supplementation if you want to live long enough to see life extending interventions. This topic is worthy of attention.

8-12% of random population samples in endemic areas test positive, and that is not false, infection rates are really that high.

My brother-in-law had bad Lyme at one time and was hospitalized for it. He said they did intravenous antibiotics (I think). And they did a spinal tap for testing. *winces* I guess a spinal tap would be good for bad cases or something... can't see it being used for normal testing. Are there any new lyme tests coming out or planned soon that are more accurate? Tests that don't involve spines...


Some new tests are in the works but they will have to overcome resistance from the powers that be in the IDSA in order to achieve widespread adoption. There is alot of controversy surrounding Lyme diagnosis and treatment. On the one hand we have the IDSA which maintains that Lyme is hard to catch, easily cured with a single 14-28 day course of antibiotics, and that we already know everything there is to know about the disease and need no further research or development of new testing and treatments. They are completely divorced from reality. On the other hand are the physicians of ILADS which emphasize clinical diagnosis, reference the EXTENSIVE literature documenting persistence of the infection after antibiotic treatment, and prescribe antibiotics until symptoms are resolved with no arbitrary cut-off point.

Edited by FunkOdyssey, 13 February 2009 - 08:53 PM.


#57 nameless

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Posted 13 February 2009 - 08:56 PM

I don't recall if what I had would be considered a 'false positive', or just a partial positive on the test. It's been so long, and I don't have the blood tests anymore (or even remember them in detail). I think back then they used bands or something like that, and on one band I was slightly high, but everything else was low. On repeat testing (and using different tests too), they all came back low.

Over the years I've had follow-up tests, all negative. And have had antibiotics too for various things, and never noticed any herx reactions. Seems weird to me after all these years they don't have a more accurate Lyme test, though.

#58 FunkOdyssey

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Posted 13 February 2009 - 09:04 PM

Financial conflicts of interest have been discovered for most of the IDSA "experts" that have authored the IDSA Lyme diagnosis and treatment guidelines and basically controlled medical practices related to Lyme. Some of them were trying to develop a Lyme vaccine and some of them were on the payroll of insurance companies which did not want to see long-term antibiotic treatment of Lyme become widespread. Attorney General Blumenthal of my state of Connecticut spearheaded the investigation that revealed this information and is forcing the IDSA to revise their guidelines. We've also passed legislation in my state that forces insurance companies to pay for Lyme treatment for unlimited lengths of time.

#59 youandme

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Posted 15 February 2009 - 05:22 AM

I cant say it enough... WE NEED BETTER DIAGNOSTICS...

Ohmy its so hard to get any kind of firm diagnosis ...healthy people believe blindly that medicine is an exact science..they expect if they get sick for the Doc to tell them what is wrong...

All the tests are between 40-90% trustworthy....look at the big hole in our diagnostics !

I really have hope that imaging advances will help us see infection in real time...to finally uncover the truth ...

Computer modelling combined with the new imaging has got to be a promising way forward...and once we have it..we have it !

I hope I get to see the day !

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#60 youandme

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Posted 15 February 2009 - 05:39 AM

I am 99.5% sure there is a chronic infection responsible for your symptoms and I am 98.3% sure it is Lyme. This multi-system autoimmunity + hepatitis + pain + neurological presentation SCREAMS lyme, I don't care what crap test you've had to rule it out. Please do not accept that [falsely] negative result, the sickest patients are often negative.

Please please please find and see a Lyme-literate physician in your area for proper diagnosis before you sustain further permanent damage. An empiric trial of doctor-supervised antibiotic therapy is in order.

I don't know of any virus that can cause all of those disorders and symptoms. On the other hand, the single organism borrelia burgdorferi can produce ALL of those problems with its flagella tied behind its back.

If you accept the mainstream autoimmune paradigm advanced by rheumatologists, and you treat it as such, you are going to experience a steady decline of health and function until you die. The alternative I am suggesting (treatable chronic infection) is your only hope of curing your diverse array of problems and recovering health.


Funk
One test Ive not had is for Lyme...
Why...well the Doc's argue that in Australia..Lyme Bugs are not native..therefore the only way to get Lyme is by travelling ..or from a native species that has been infected somehow..
Ive not travelled.
Yet Im yet to give up on Lyme as a real possibility.

I also believe that other reasons for suffering Autoimmunity are real.
Molecular mimicry...and Viruses/Bacterias..perhaps those L_Forms Marshall thinks is the sole cause.

In fact I do think that genetic's + some kind of pathogen/mix is IT.
Dont worry good Rheumatologists dont waste time telling hocus pocus stories about Autoimmunity(at least mine have spared me)..what Im finding is that most Doc's (especially the ones that have been around...are much more open to the possibilities that pathogens are the cause..

Remember I tried 'Doxy' 200mg for 3 months...I had zero herx..zero result.
No herx could mean that I dont have Lyme I guess.

What I find interesting from my previous post on measles..is that Ive now found that my orignal abdominal pain/hepatitis was caused during Zoster Varicella infection...its very rare..and some people die from Liver failure during Zoster infection..I survived..but Ive low grade 'hep' now as a left over it seems.

Could it be that some part of the Zoster genome is still stuck in my Liver ! .

Thanks for your post..I will be demanding the Lyme test in any case.

Cheers

Edited by youandme, 15 February 2009 - 05:41 AM.





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