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Joined: Jun 2007
Posts: 47
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That's interesting - I actually hadn't seen "LGS" mentioned before this, but it does seem plausible. Good ol' wikipedia says something called "Zonunlin" increases intenstinal permiability and is related to LGS.

Die Zonulin!

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Hey Brad,

No my Dad doesn't visit the site. I think he's moved on past the point where he's interested in a cure. He's had the disease since his early 20's, and a very severe case too. I think he's just learned to live with the disease, and he's having some luck with Embrel (enbrel?)...some multi-thousand dollar treatment.

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I'm glad this forum was here.

It's tough having a disease that no one else has, no one else knows about (I had to explain to my doctor how to make a diagnosis, which she then verified), and the only thing you're sure it's going to do is cause you pain.

Before I came here, I was just reading the same exact thing over and over again on every web site I found. And then I came here, and jumped into the myriad of complexity that is AS.

If there's one thing I hate (and you may have noticed this) is not enough information. Even if I have ZERO success, I'll still have talked a lot of people with many different experiences.

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Quote:

wow. you've been diagnosed for a WEEK and you're already gettin all theoretical and philosophical on us?




Ha! Well - I was all mopy last week, but my wife just won't put up with stuff like that. She's all "Southern".

I checked out the LDN link and searched around a bit more. It seems like a fairly promising treatment. Where did you learn about it?

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Quote:

My body is showing tremendous signs of healing.......as long as I continue to give it what it needs.




That's awesome.

I agree with you. Eliminating toxins and promoting a healthy intestinal flora is definitely on my AS to-do list. It was already on my to-do list, save for the Taquerias I frequent.

Joined: Apr 2002
Posts: 280
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Welcome to the forums! I'm the black sheep of the family,
I did NOT have any success with the NSD. I'm not trying to open a can of worms on that topic but say it only to lead to,
the idea of High Vitamin D, Calcium, Magnesium from a variety of sources DOES work for me. That even confusses things more huh. LOL
Ive had AS for twenty something years and tried many NSD diets for long periods with not luck. I got a juicer as a present last year and started juicing everything in sight focusing on veggies with minerals and vitmins like calcium from brocolly (sorry can spill i mean spell). Anyway, since i've started drinking all this juice my flair ups are gone. Its been about eight months - a year and sure, i have the same old bones that hurt but no flair ups that kick me to the bed. I hate cooked veggies but hey its easy to down a glass of juice. Its gotta be good for ya.

Last edited by OhHenry; 06/10/07 03:59 PM.

AND SO IT GOES...
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Yeah - after reading through A LOT of stuff, I'm coming to the conclusion that AS is more of a treatable symptom than a "disease."

It seems like there are three classes of triggers:

1) Intestinal issues
2) Immuno issues
3) Natural Inflammatory issues/allergies

With solutions like:

1) Low Starch, rebuilding intestinal lining
2) Supplements, sunshine, and LDN (low dose naltrexelone, see BarnGoddess84's comments)
3) No nightshade diet

I think mine is probably more in line with number 2, and that's the path I've been following. Question for you - how long after you starting your regimen did you start notice results?

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