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#511558 - 06/30/15 02:59 PM Would love some input!
Songstress06 Offline
New_Member

Registered: 07/20/14
Posts: 11
Hi all,

I was really hoping to get some insight from you all. I have the HLA B27 gene and Sacroiliac joint pain, however I know not everyone with the gene has the disease. A rheumatologist thought I probably have AS and I wanted to avoid drugs if possible.

I have tried the No Starch Diet and it didn't help me. I gave it 3 months and not only did it not make my pain better, but I also stopped having periods (and not due to weight loss- I gained 5 lbs) and generally felt bad. I also had a Stool test done and there was no Klebsiella, parasites, or anything like that. I have been gluten and dairy free, and am not sure if that has helped me.

I guess what I'm wondering is- has everyone who tried the NSD found it helpful?? Has everyone had Klebsiella/ parasites/ yeast if tested??

It seems like almost everyone I read about with AS has had huge improvement with diet change, but I haven't.


I'm trying to figure out if this is AS or an issue of ligament laxity/ joint hypermobility, which I have a history of in my other joints. My pain gets worse if I'm super inactive, but it doesn't always get better with activity... Sometimes if I try to walk or exercise it gets worse. I usually only have pain on one side, and I've been told that the side where I have pain is much more mobile than the side without pain. I'm not sure if that fits with AS. Sometimes my inflammation levels are high and sometimes my CRP has been as low as 0.2, but even then I have pain. I have had up and down pain for 2 years (and one episode in 2010) and am 29 years old. I have some inflammation, but I don't have any fusion at this point.

Does this sound like what you have gone through??

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#511560 - 06/30/15 03:12 PM Re: Would love some input! [Re: Songstress06]
mooman Offline
Second_Degree_AS_Kicker

Registered: 03/13/09
Posts: 206
Does sound similar. Don't know about the whole klebsiella thing that's only a theory. If you got pain how long does it last?

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#511566 - 06/30/15 06:24 PM Re: Would love some input! [Re: Songstress06]
dlee Offline
Second_Degree_AS_Kicker

Registered: 01/09/12
Posts: 229
Loc: Auckland, New Zealand
That doesn't sound like me. When I have pain and inflammation from AS it moves around. Generally it is at the base of my spine and in the sacroiliac's. One day on the right side, next day it could be on the left side, then it could move to middle/upper back right side, then left side. Or worse it could move into my eyes (iritis) and the absolute worst I find is when it moves into my neck. That usually comes with a dose of depression. Mostly at the base of my spine though or in my shoulder blades. I've never been tested for Klebsiella or parasites. Generally, if I go for a walk it eases the tension somewhat rather than make it worse. Where I have pain, it is very much immobile. Its somewhat seized up.
_________________________
_________________________________________________________
Diagnosed AS year 2000 age 26; First onset of major symptoms came with severe food poisoning leaving me in chronic pain hardly able to walk/sleep/sit - never been the same since; HLA-B27 positive; bouts of iritis; no biologics ever, controlling with NSAID's and diet but trying to get off NSAID's through various "biohacking" experimentations; Live in Auckland, New Zealand

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#511569 - 06/30/15 07:17 PM Re: Would love some input! [Re: Songstress06]
Songstress06 Offline
New_Member

Registered: 07/20/14
Posts: 11
Thanks for the input!

@mooman The pain never goes completely away but the symptoms go up and down.

@dlee The pain is on the right side of my SI 97% of the time. It doesn't really move into my low back.... When it started it was on the left side. I started seeing a chiropractor and around that time it moved to the right side. My physical therapist said my left side (which doesn't hurt) is more immobile and the right side (which hurts) is more mobile. Sometimes a walk makes it better and sometimes a walk makes it worse. It is so weird...
dlee it looks like you've never been on biologics. How have you controlled your symptoms? Or are you still in a lot of pain?

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#511575 - 06/30/15 10:24 PM Re: Would love some input! [Re: Songstress06]
Smed Offline
Senior_AS_Kicker

Registered: 09/05/01
Posts: 926
Everyone has Klebsiella bacteria in gut. Depends on if AS is caused by miss- identification of connective tissue by immune system.
There may be many causes of why the immune system attracts major joints connective tissues. I am glad that reducing starch intake helped me. Unfortunately my spine had all ready fussed by the time I found out about the possible connection of the Kleb-bacteria and the miss identification of connective tissue.

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#511593 - 07/01/15 05:49 PM Re: Would love some input! [Re: Songstress06]
dlee Offline
Second_Degree_AS_Kicker

Registered: 01/09/12
Posts: 229
Loc: Auckland, New Zealand
Originally Posted By Songstress06
dlee it looks like you've never been on biologics. How have you controlled your symptoms? Or are you still in a lot of pain?


How timely you ask that question. I have controlled my pain for the last 15 years on NSAID's. Dyclofenac to be specific. Until the last 5 weeks that is. NSAID's don't seem to affect me .....at least visibly. Which I have recently come to the conclusion is possibly worse because I suspect whilst I don't appear to have any side effects from them, they will never allow me to heal my gut, and I suspect they will effect my longevity on this planet. I have never taken any gut buffering medication to protect from NSAID's. I just don't seem to need it however I worry about damage.

Last 5 weeks I have ditched NSAIDS with terrible results. Back to my bad old self. Terribly restricted movement, walking like a 90 year old, unable to lift weights...struggle to get out of bed, can't sleep without waking up 15 times a night from being uncomfortable or being in pain.....depressed.

This week things are turning around. For the first time ever I know I will be able to get off NSAID's for good and be totally drug free and still be able to eat my sweet potatos, white rice and beets.

The results have been very rapid and my inflammation is coming down and my pain subsiding a bit each day. Each day I am recovering more and more movement. I will post a separate post later this week.




Edited by dlee (07/01/15 07:46 PM)
_________________________
_________________________________________________________
Diagnosed AS year 2000 age 26; First onset of major symptoms came with severe food poisoning leaving me in chronic pain hardly able to walk/sleep/sit - never been the same since; HLA-B27 positive; bouts of iritis; no biologics ever, controlling with NSAID's and diet but trying to get off NSAID's through various "biohacking" experimentations; Live in Auckland, New Zealand

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#511594 - 07/01/15 05:51 PM Re: Would love some input! [Re: Songstress06]
dlee Offline
Second_Degree_AS_Kicker

Registered: 01/09/12
Posts: 229
Loc: Auckland, New Zealand
I also don't want to take biologic's. I just don't trust any medications. I'm looking for natural solutions.
_________________________
_________________________________________________________
Diagnosed AS year 2000 age 26; First onset of major symptoms came with severe food poisoning leaving me in chronic pain hardly able to walk/sleep/sit - never been the same since; HLA-B27 positive; bouts of iritis; no biologics ever, controlling with NSAID's and diet but trying to get off NSAID's through various "biohacking" experimentations; Live in Auckland, New Zealand

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#511611 - 07/02/15 02:09 PM Re: Would love some input! [Re: Songstress06]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21298
Loc: Upstate NY
i tried diet, supplements, LDN....

the LDN did help my enthesitis,

but really, i didn't get my life back til i went on Humira; its been great without any side effects. i'm not perfect, but so much better.

i still take the LDN, supplements, probiotics, and don't eat dairy (as i'm casein sensitive), but humira was the game changer.

as for hyper mobility....one doctor told me i had that (EDS) because my joints do become lose from fluid from inflammation...but i am not hyper mobile...never was...but for some people, the inflammation can cause fluid in joints and that can make joints "loose",

but for me, it is due to an autoinflammatory process, so the drug that deals with the immune system and autoinflammation, takes care of the symptoms better than anything else.
_________________________


sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

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#511622 - 07/02/15 08:34 PM Re: Would love some input! [Re: Songstress06]
Songstress06 Offline
New_Member

Registered: 07/20/14
Posts: 11
@dlee I'm so sorry to hear that you've had trouble getting off the NSAIDS, but that's great that you're starting to go back to normal! Yeah, the biologics really scare me... Especially because I'm a singer and I don't want to end up sick and unable to sing all the time. But some people seem to tolerate them well so maybe it is worth a shot, I don't know.

Sue, they have mentioned EDS to me, too. I have +- genetic markers. They have also thought I may have some sort of autoimmunity that attacks my ligaments, leaving me with joint pain that may be slightly different from AS. It's a journey figuring this thing out...

I do find that osteopathic/ PT adjustments make me feel better. It just doesn't last. Does anyone else experience that?

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#511634 - 07/03/15 12:53 PM Re: Would love some input! [Re: Songstress06]
ValsMum Offline
Steel_AS_Kicker

Registered: 07/05/10
Posts: 1168
I was dxd with RA 6 years ago and my lab markers were all sky high. However after trying all sorts of traditional RA meds, I found diet to be the most helpful AND HEALING for me. My labs even dropped 50 points every 6 months until a few went into normal range, which was a first for me.
Eliminating grains, dairy ,some sugar & meat was key for me.
I feel like I have AS so that is why I replied to your post. My si joints and knees gave me the most trouble. My opinion is that
I feel like our bodies can heal from a lot more than we think it can, but we cannot eat processed food everyday and expect to get well quickly.
www.mercola.com/article/rheumatoid_arthritis/index.htm

Hope you find something that makes you feel well.
The link above has some diet guidelines that are REALLY helpful.


Edited by ValsMum (07/03/15 12:54 PM)
_________________________
Diet change has improved my RA. I feel best eating raw veggies and some fruits and avoiding grains, sugars, nightshades, beans and dairy. Sed rate dropped from 65 to 19, but it took over a year.
www.fatsickandnearlydead.com

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