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Supplement Regime For Chronic Autoimmune Disease ?


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78 replies to this topic

#61 k10

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Posted 22 February 2009 - 10:35 PM

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 !


This may just happen....

3D imaging of lymes disease moving through the blood:


Real-time high resolution 3D imaging of the lyme disease spirochete adhering to and escaping from the vasculature of a living host.
http://www.pubmedcen...bmedid=18566656

Edited by k10, 22 February 2009 - 10:36 PM.


#62 krillin

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Posted 02 March 2009 - 04:50 AM

The best thymic protein is supposed to be Proboost Thymic Protein A. It's expensive, so I just take a packet once a week and tell myself it's a maintenance dose. The best price is usually to be had at valuenutritioncenter, valuenutrition, myvitanet, or drkowalski. (They're all the same company, but the prices are different on each site and change periodically. They also count as drugstores if you have a Citi Dividend or Chase Cash Plus Rewards.)

After reverse-engineering my latest Chase bill, I'm confident that LEF counts as a drugstore, while iHerb, Puritan's Pride, BAC, Bulk Nutrition, Superior Nutraceuticals, and Netriceuticals are in the general 1% back category. The math works out perfectly that way, but I haven't proven that that is the only possibility.

Chase and HSBC no longer count LEF as a drugstore, but VNC et al. still are. Anyone have any recent experience with Citi? It's almost not worth the effort, since Citi's 2% is just barely above my Fidelity 1.5% card.

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#63 krillin

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Posted 02 March 2009 - 05:07 AM

p. 93-94 of Betrayal by the Brain has a case report of CFS/FMS/SLE/Sjogren's. The subject responded to the combination of nitroglycerin, nimodipine, and gabapentin. Symptoms improved, lupus resolved, and the anti-ds DNA test became negative. Proposed mechanism: enhancement of noradrenergic neurotransmission causing immune suppression.

It's part 2 of the Goldstein trilogy. Chronic Fatigue Syndromes: The Limbic Hypothesis and Tuning the Brain are parts 1 and 3.

#64 youandme

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Posted 05 March 2009 - 06:43 AM

p. 93-94 of Betrayal by the Brain has a case report of CFS/FMS/SLE/Sjogren's. The subject responded to the combination of nitroglycerin, nimodipine, and gabapentin. Symptoms improved, lupus resolved, and the anti-ds DNA test became negative. Proposed mechanism: enhancement of noradrenergic neurotransmission causing immune suppression.

It's part 2 of the Goldstein trilogy. Chronic Fatigue Syndromes: The Limbic Hypothesis and Tuning the Brain are parts 1 and 3.



Hi Krillin
Just quickly responding to your post...will have to look more into it !

Im not familiar with nimodipine, and gabapentin...of course I know of nitroglycerin for its other useful properties. !

Don you know how these substances are working together or individually ?


"enhancement of noradrenergic neurotransmission causing immune suppression"

forgive me Im going to have to look up "noradrenergic"..

Currently having some success with LDN, Betaine HCL/Pepsin, Thiamine, Niacin.
However Im nowhere near where I would really like to be..

Cheers

#65 youandme

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Posted 05 March 2009 - 07:36 AM

Ok so I have a quick look around Dr Jay Goldsteins ideas...I can relate to some of this...Ive had Nerve Velocity/Conductivity Tests which found nothing..now they are going to test my brain .."Visual evoked potentials"
trying to find out what is causing all these nerve/muscle twitches...

I dont quite understand how the combo of drugs works though yet though !?

So though it's early to tell..perhaps something in this...

#66 youandme

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Posted 05 March 2009 - 10:25 PM

This post a little off topic..however ..its very relevant to all those Autoimmune tagged people..like me :)


Enterovirus 'triggers Child/Type 1 diabetes'


http://news.bbc.co.u...lth/7926026.stm

Although it's not the only answer..clearly at 60% its a big find.
I said it and I will say it again...better diagnostics including nano-imaging and genetic identification/sorting is going to do it for us big time. !

#67 tlm884

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Posted 05 March 2009 - 10:32 PM

Have you look into hyaluronic acid for the moisture issues and the arthritis? Maybe also glucosamine and chondrotin for symptomatic releif (instead of immunomodualtion)

#68 sdxl

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Posted 06 March 2009 - 06:35 PM

I'm getting Lactobacillus GG from Culturelle capsules. Unfortunately my first experiment was a failure, I think I grew something in the milk, but it wasn't Lactobacillus GG! ;) Tasted like cheese, bleck, no lactic acid. I don't think the Lactobacillus GG is able to start culturing the milk at its original pH, another culture (traditional yogurt culture maybe) might be needed to jumpstart the process. I guess there is a difference between surviving vs. thriving at a wide range of pH's. This is unfortunate though because if I introduce other cultures I will have no idea what ratio or numbers of each I end up with.

LGG doesn't ferment lactose, therefore milk is a poor medium to support the growth of LGG.

#69 FunkOdyssey

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Posted 07 March 2009 - 05:53 PM

Doh. The explanation was almost a year too late but don't worry -- I still feel like an idiot after all this time. ;)

#70 sdxl

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Posted 08 March 2009 - 12:52 AM

Well, better late than never. ;) LGG does ferment galactose and glucose, so pretreating the milk with lactase should make it a more appropriate medium. Co-culturing it with a lactase producing micro-organism, like Streptococcus thermophilus is also an option. But then you don't have a pure culture. I've seen this specific combination in one LGG product. If you will end up with something palatable, I don't know.

#71 krillin

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Posted 09 March 2009 - 02:59 AM

Hi Krillin
Just quickly responding to your post...will have to look more into it !

Im not familiar with nimodipine, and gabapentin...of course I know of nitroglycerin for its other useful properties. !

Don you know how these substances are working together or individually ?

Nimodipine's a calcium channel blocker, so it'll have some effect on the neural network. Gabapentin, like pregabalin, is a different type of calcium channel blocker. Nitric oxide augments glutamate release.

The further I get into his books, the more convinced I become that it's going to be impossible to come up with a predictive model for these neurosomatic disorders, so we'll always be throwing different drugs at them until the right one (or combo) is found. Here's an example how maddening it is: my myofascial pain from mold/dust inhalation has benefited from both nitroglycerin and glutamate antagonists. I've given up trying to explain that one and just draw a black box around that part of the mechanism.

Gabapentin and pregabalin are useful as permissive agents. At one point pregabalin allowed LDN to work for me even during times of heavy mold/dust exposure. (Fricking LDN... It only works when I don't need it badly.) Gabapentin is required by me in order for amantadine to release dopamine. (But dopamine gets depleted in a matter of weeks and amantadine won't work again until I get recharged. Amantadine withdrawal is very unpleasant, so I can't recommend cycling it.)

#72 youandme

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Posted 14 March 2009 - 01:42 AM

Krillin

Funny you should mention LDN not working all the time for you...its happened to me..all was good for nearly 6 weeks...suddenly almost over night Ive started to feel rotten again..same old fatigue aches and pains.

I cant work it out ?!

#73 bgwithadd

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Posted 18 March 2009 - 05:23 AM

egcg. maybe low dose naltrexone, too?

#74 pinballwizard

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Posted 21 July 2009 - 06:34 PM

I came back from the Mayo Clinic about a month ago. They said I suffered from inflammation from an out of control immune system.

IBD (the form is called microscopic colitis)
ecxema (sp?)
tendinitis and arthritis as a result of the immunes system attacking those areas.

Here is what the best doctors in the world said:

DONT TAKE
antibiotics ever unless it is serious.
avoid getting a serious infection again. ie. Dont drink the water when you go on vacation. ie. dont get food poisoing, etc etc. it will bring your symptoms back.

DO
exercise regularly and consistently
Exhaust Modern Medicine and then use alternative medicine because there are a lot of things modern medicine does not have proven.

Cutting edge Alt medicine has told me to take:
Intense probiotics http://www.vsl3.com/ because that is where the inflammation is starting.
Nystatin (an antifungal because in my diagnosis, I have a problem with yeast? Do you have candida albicans? If not dont take it.)
MSM glucosimine and chondroitin
Fish oil

Edited by pinballwizard, 21 July 2009 - 06:36 PM.


#75 tham

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Posted 22 July 2009 - 04:49 PM

You could try cordyceps.

http://www.ncbi.nlm....l=pubmed_docsum

http://www.ncbi.nlm....l=pubmed_docsum

http://www.ncbi.nlm....l=pubmed_docsum

#76 pinballwizard

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Posted 20 October 2009 - 05:18 AM

Hi All

Ive been reading quite a bit ..yet just like many I get confused as to what are the best Supps for me with my particular chronic conditions...perhaps you could possibly help.
My body started to attack itself after a life threatening bout of adult chicken pox 24 months ago and Camplyobacter infection 2.5 yrs ago.

Basically those Conditions I now suffer are all Autoimmune in nature:
Hashimotos - Antibodies affecting thyroid (thyroid replacement being taken)
Gastirc Parietal cell Antibodies - Attacking the Stomach Lining Cells - affecting Nutrient Absorption (including B12)
Sjogrens - Antibodies attacking moisture producing glands (eyes, mouth, internal organs)..no effective treatment for this..

Ankolysing Spondilitis - Arthritis affecting Pelvis/Vertebrae
Also have a high liver function test (GGT) Doctors still no idea what that is yet !

Anyhow currently Im taking:

Milk Thistle 200mg x2
Alpha Lipoic Acid 200mg x 2
Selenium 200mg x2
Omega 3 (400 EPA, DHA 200) x 4
Glucosamine 1500mg x 1
B12 5000 mcg x1 (sublingual)
Billberry 2.5mg x 1 for eyes
Currently Trialing an Antioxidant Blueberry Punch see link below:
http://www.usyd.edu....ewsstoryid=2077

btw, the worst symptom is Dry Eyes from the Sjogrens...no treatment exists apart from steroid drops and toxic drops like Restasis (not available in my country)
The lack of moisture in my eyes can be caused by the inflammation from cytokines
Sjogrens is not very well understood yet..but it has been suggested that these factors play a part...Cox 2 is about to be investigated for it's role if any..

Some - Sjogrens Inflammation Factors - (Currently Known !)
interleukin-1beta (IL-1beta), IL-6, CXCL8 (IL-8), IL-12 p40, IL-15,
tumour necrosis factor-alpha (TNF-alpha),
epidermal growth factor,
CCL4 (MIP-1beta), CCL2 (MCP-1),
CCL11 (Eotaxin), CCL5 (RANTES),
TNF-RI and TNF-RII
http://www.ncbi.nlm....pubmed/15182255


What do people think might help me !?

thanks in advance for any help




Do not take antibiotics or get any strange diseases. Your body does not react well to foreign invaders. It will over-react.

#77 rwac

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Posted 20 October 2009 - 05:56 AM

youandme, have you already decided against taking D3 ?

Also, Selenium might be good for Hashimoto's to reduce TPOab.

#78 youandme

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Posted 25 October 2009 - 01:55 AM

youandme, have you already decided against taking D3 ?

Also, Selenium might be good for Hashimoto's to reduce TPOab.


Hi rwac

My D3 levels are high naturally (above norm range)..so I dont know if it would make it any better.
Tried selenium before cant say it did much...TPO was higher after supp for 3 months...my TPO has dropped now but after a recent Radioalogical Scintagraphy..I found out why...the thyroid is completely non functioning and thus it has been completely destroyed.

Very effective immune system we have !

I dont want to go into details but my health is heading south quite fast (other autoimmune mediated diseases)...seems nothing can stop the process other than perhaps a stem cell transplant ( immune system wipe out and start again therapy)...but thats not FDA approved for Multple Autoimmune Diseaesed patients! God knows why !......so a lot of people have few options when Autoimmunity diseases cascade like this.

Its a bummer.

Keep healthy ... lead a stress less lifestyle.

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#79 VespeneGas

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Posted 28 November 2009 - 02:46 AM

I know matt mentioned it earlier in the thread, but have you tried caloric restriction? I'd bet my bottom cent it would help with your symptoms. Within days of eating CR my chronic nasal congestion, chronic skin rashes, and chronic back pain subsides, as do periodic depressive symptoms, which are probably mediated through, you guessed it, inflammation.




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