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#511557 - 06/30/15 02:54 PM Would LOVE your input! Not sure if I have AS!
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.

I have tried the NSD 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.

Does this sound like what you have gone through??

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#511572 - 06/30/15 08:21 PM Re: Would LOVE your input! Not sure if I have AS! [Re: Songstress06]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 5989
Loc: Reno or SFLU Philippines
Hello, Songstress06:



Quote:
I have the HLA B27 gene and Sacroiliac joint pain,


That is the classic definition of AS or "Pre-AS" (before the permanent characteristic skeletal damage occurs).

Quote:
…there was no Klebsiella, parasites, or anything like that.


UNTRUE. Better to put this way: Statistically, there is no Klebsiella overgrowth. Nearly everyone has the germ and it does not take any statistically significant number to cause AS.

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


No, not everyone with AS has had the diet alone work for them. In fact one case that stands out for me was instructive because it took so long and was very very frustrating: He got great relief when fasting, but that relief did not continue even on the strictest NSD! Could not figure out what the problem was, but over a year later he had found out that his Hg (mercury) levels were off the chart! Once he was properly chelated (and I promote chelation to some extent as it can help reduce a flare in addition to other health benefits), the diet began working.

Sometimes there are additional factors, especially food sensitivities or allergies, candidiasis, parasites, etc, that complicate the AS enough that diet alone will not solve the problem until the other issues are addressed. It is important to keep looking and experimenting and I am of the opinion that our guts require a "complete teardown" to rebuild the mucosa and epithelium to better reject the AS tendencies.

Quote:
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


Hypermobility is very common in early AS, but it is very mild and mostly causes "crepitus."

You are not alone--about 30% of people with AS do not have such spectacular results from diet. If we can assume that all of these were totally assiduous (tested every morsel before eating), it is not a small proportion, and some still require help from standard medications while addressing the root cause of AS. Things like the biologics can help very much, also sulfasalazine and a few other drugs are reasonable, but better to check out Mercola site before starting back on NSAIDs, and adhere to a supplementation regimen that includes EFAs especially EVOliveOil. I made the choice to combine strict NSD with antibiotics and had rapid and permanent relief, but was lucky I did not experience the fungal overgrowth others have had using these true miracle drugs.

I am sorry You did not find relief with the diet, and I am frustrated for You, also, but don't stop trying in this area: AS begins and ends in the gut, but it can ragdoll every part of our bodies!

HEALTH,
John
_________________________
Important AS Resources

Professor Ebringer: On Diet and AS;


RED ARROW --> Philippines

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#511573 - 06/30/15 08:38 PM Re: Would LOVE your input! Not sure if I have AS! [Re: Songstress06]
miniowl Offline
Journeyman_AS_Kicker

Registered: 04/24/15
Posts: 107
Hi,

In terms of the pain - when you don't eat NSD - do you feel worse after a very starchy meal? In general I'd say my pain would get better with activity but if I was really tired and had to be active, it might get worse.

In terms of NSD - I had to also go no sugar (not even fruit) before I had any success. (Also, no alcohol and my only caffeine is from green tea)

Have you tried PT? I had all kinds of back problems (some AS and some probably more the result of one muscle compensating for another because of bad posture habits. That's helped a lot)

Whether you do or don't have it, it can't hurt to focus on a gut health. I don't remember any AS type pain before about 6 or 7 years ago when I was given llevaquin for a sinus infection. I think this heavy antibiotic damaged my gut microbiome. Then I cluelessly ate lots of sugar and just took OK care of myself for a few more years. This year I got bacterial food poisoning and went into serious flare mode (which is when I finally got dx'd) If you're not having serious flares, even if it is the beginning of AS maybe you can get it to quiet down and never do any damage if you have a healthy gut that (my understanding is healthy gut = no unhealthy inflammatory response)
It seems that you don't have pathogen overgrowths, but did they check to see if you have good levels of good bacteria?

Good luck!!



Edited by miniowl (06/30/15 08:55 PM)

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#511579 - 07/01/15 03:38 AM Re: Would LOVE your input! Not sure if I have AS! [Re: Songstress06]
mooman Offline
Second_Degree_AS_Kicker

Registered: 03/13/09
Posts: 206
It seems that just following the NSD diet is not enough. I get so confused by the complexities of gut health. Like how did you even begin to know that your mercury levels were off. I also see so much information from others it almost seems that you have to be a nutritionist to even begin to understand most of this information. It is no wonder that some people lose faith in the diet. I am on it only because after reading the A. ebringer conclusion that you are still better off doing the diet with the meds but I would love to have total faith in the diet to come off the meds. Mercury levels lol smile how would I even begin to look at this? Guess it is back to the library for me. Also a lot of information also seems to advocate eating starch for other health benefits , it does really confuse me sometimes. @songstress I first started out with pains like that and had sciatica in and out for years my AS only hit 0 to 100 after I had the worst food poisoning episode ever in my life while hitch hiking around and eating out of a unclean pot with left over mince. Some docs reckon I had RA after that - that led to AS but who knows eh. It took another 5 years after that before I even heard the name Ankylosing Spondylitis. It is a long process I have since spoken to docs here in the UK and I see that a lot of them have new guide lines and they now refer to it as Axial Spondylitis (that S word could be wrong) basically they now look at it from a pure inflammation point and no longer just wait for fusion to appear before they make a diagnosis which is a good thing. If you think you have something and you are able to get a second opinion go for it. Investing in your health earlier than later is the best option. Worst thing that can happen is that your wrong - but better to be that than right years later. Honestly I have have tried to forgive those docs I saw years ago when I was naive enough to think they had the answers but I harbour lots of resentment against them especially the Physiotherapist who wrote a letter to my parents saying that I did not need an MRI scan as I was fine and just needed to do my excercises. First time I had an MRI 4 years after that Physio - boom - inflammation lighted up like a christmass tree around my SI area and that started the process to my AS diagnosis. SI joints now fused so undeniable. Good Luck smile this is a great site. I don't always come on here as I am a coward and i get scared reading about how severe some people are on their AS path and it freaks me out to no end. Especially as my own symptoms get worse - but it terms of actually getting the courage to face it and do something active this place well.......Kicks AS smile

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#511621 - 07/02/15 08:28 PM Re: Would LOVE your input! Not sure if I have AS! [Re: Songstress06]
Songstress06 Offline
New_Member

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

@dragonslayer, thank you for all that info! My Dr. did say only a very small percentage of people with the gene actually get AS, so that was something to consider.

I had a stool test, an organic acids test, etc, and they didn't really find anything. No parasites, yeast, bacterial overgrowth, or inflammation in my gut. And my beneficial bacteria level was pretty good, too. I was expecting to see a lot of junk come back, but it didn't.

@miniowl Thank you! I think you're right- Going to PT and focusing on gut health are both good ideas no matter what the diagnosis. I don't notice any difference at all in symptoms if I eat a starchy meal. In addition to doing NSD for a few month, I also did the Maximized Living Diet which was really restrictive on sugar... As in, I wasn't even allowed to have carrots!! No change in back pain with that.

@mooman I think it is good that they look at AS with inflammation before there is fusion. I don't have any fusion now but obviously I want to avoid it, so if there are doubts about my diagnosis, I'd rather assume it's autoimmunity... I'm so sorry your symptoms get worse frown I think it's good not to compare. I know it can be hugely debilitating, but everyone is different. Kick AS everyone!

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#511625 - 07/03/15 03:19 AM Re: Would LOVE your input! Not sure if I have AS! [Re: DragonSlayer]
boz Offline
Active_Member

Registered: 05/04/15
Posts: 63
Loc: Norway

Quote:


No, not everyone with AS has had the diet alone work for them. In fact one case that stands out for me was instructive because it took so long and was very very frustrating: He got great relief when fasting, but that relief did not continue even on the strictest NSD! Could not figure out what the problem was, but over a year later he had found out that his Hg (mercury) levels were off the chart! Once he was properly chelated (and I promote chelation to some extent as it can help reduce a flare in addition to other health benefits), the diet began working.





How do i go about getting chelated?
_________________________
Norway

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