Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Is AS a Disease or a Reaction?

Hey, petesimac:

We stress and strain our joints and muscles and can flare from exercise even from fight-or-flight response. But the thing with doing NSD is that at least we have more control over our disease.

Some of us got AS not due to any latent lesions but due to active candidiasis. One of the caveats of the antibiotic regimen is to avoid this fungal overgrowth, so elimination is key, but like You said--the whole thing is complex enough to be rather daunting and it is not easy to convince people, but 'for those with ears-let them hear.'

NSD is not a cure, but it is the closest thing I have found.

HEALTH,
John

I just wanna add that massage threw me into an unbelievable flare.The therapist had read up on AS and that it was a gut disease so she thought she was doing me a favor and was "getting blood flow to my gut" and pushing hard on it,so hard that I felt it throbbing and it hurt..Well I walked into her office (diet had helped) and drug my leg out in agony and had to fast!So other things CAN cause flare.Also at a support group in Houston,a lady there said massage gave her a flare.
Also,I as a successful "NSDer" do not claim NSD is a cure,if it was I would be eating starch pain-free.It is a disease management tool!
Shauna

I want to thank everyone for their comments on this thread. I new it would cause a little tension but i also new that through the tension i would get the answers to the questions i was looking for and i think Shauna summed it up pretty good saying that NSD is a "MANAGEMENT TOOL". I have believed that it has great benefits regardless if it takes your pain away completely, just a little, or not at all even. I am more on a LSD diet and although my pain is not gone i feel better overall and my belt line is looking and feeling better. I speak for myself on this. Although i would like to go at the NSD diet for a few months to really try it out i doubt i can make this work while trying to feed the family and work full time. My stress levels are already through the roof and i hate to say it but learning to correctly do the NSD diet will take incredible effort. Who knows, maybe my condition will worsen and i will try this route. It would be nice to have a step by step(simple) guide to follow for doing this diet but from what i gather there is a monitoring and learning curve involved because its not just knowing that a food is starch free but how will the food react to another food. Or in what conditions can i eat this food. Also my body may like a particular food but your body may reject it. I think i am falling into the "If it Works, Use It" mentality. If the Meds are your tool use them. If the Diet is your tool use it. I believe our health will be better with the diet though but of course that is only if it works for you. i will say this. i think John is on to something with the Antibiotics. If there were just a way that it could be safer.

Thanks, Reese

"Blinded By The Light"

also famous for containing the line "revved up like a deuce"

which because of the way it was pronounced on the Manfred Mann version, a lot of us sure thought he was saying something else, and wondered why anyone would want to "wrap up like a douche"

Exhitibit A


but at least as non-sensical as that sounds, it still makes more sense to me than the rest of this thread, with lines like "intestinal permeability" "substrate for Klebsiella proliferation" and "Acinetobacter calcoaceticus" must be really difficult get a good rhyming scheme for, and even harder to sing!!

(I now conclude that I must be double-blind and would definitely flunk a critical Popperian test!!!)

You mean to tell me you've never heard that once wildly popular song with lyrics that include...

"Got out of that fracas, only to be bamboozled by acinetobacter calcoaceticus..."

Can't remember the artist off-hand, but do recall it got a lot of play during the period of grunge music in the early to mid-90's.

Catchy!

Petesimac, I'm not sure if you have read or understood this point before but to rid oneself of pain with diet alone you first eliminate starch. If your pain levels don't respond favorably then you can also try eliminating dairy, and sugar. My pain is lifting now after a 24 hour fast and total sugar elimination. The NSD has a learning curve. Just because I'm in a flare does not disprove the validity of the NSD. Sheesh, I'm a total newbie! It bothers you that some people feel "cured" by NSD without proper scientific evidence? I don't understand that. I've felt many emotions when I here of someone finding a way out of pain......"bothered" is not one of them.

-Peace

***********

John, You are a better person than I to try to answer all of these accusations against the NSD. You have a measure of patience that I can only hope to one day achieve. I don't understand why this becomes a "hot button" of discussion unless NSD comments are safely tucked into the NSD forum.

I personally feel happy for any AS-er who finds relief in any form, by any method. Just wish we could all live in harmony and PEACE.

"All you need is love, da da da da da...all you really need is love!"

Hi Donette,

I got the sense that Pete was questioning the use of the word "cured" as opposed to "controlled". It seemed to me that he was pleased that NSD was working for some people but couldn't put together "cured" with flaring. Cured would seem to imply remission, whereas controlled allows for the possibility that overdoing something or slipping up with the diet could cause an increase in pain.

I think we all probably agree that there is no "cure" for AS (or RA for that matter) at the moment. We just have different ways of controlling it and minimizing its damage. For some lucky folks, especially those who are willing to endure the hardship of a strict no-starch diet, they benefit by having a control system that doesn't necessarily include drugs with all their attendant, risky side-effects.

For others, NSD doesn't seem to work (maybe because it also requires an antibiotic protocol) or they cannot manage a no-starch diet (possibly for medical reasons) and the options open to them are the range of DMARDS that are currently available.

I find it interesting that each person's response to medications is quite different so it doesn't surprise me that the responses to diet might be different also.

I appreciate people being willing to challenge assumptions and ask hard questions. In some ways, that's how we dig deep and stretch our ideas - sometimes it leads to breakthrough thinking.

Asking questions about NSD or challenging NSD does not necessarily amount to "accusations". These are good and valid questions and I believe, so long as they are asked in a respectful way, that they should be encouraged.

I'm so happy that you're managing to lift your pain levels after your fast and the sugar elimination. That's really great news. I hope you continue to improve. It's a very exciting prospect to think that you can get your quality of life back. I very much admire John DragonSlayer for his dedication to both his own health and the possibility of others achieving something similar.

Very Well Put Wendy

Nice clarification, Wendy, I think you have it exactly right.

For me the NSD is just a bit too nebulous. If I've eliminated starches and I flare, it must be sugar; if I've eliminated that and still flare maybe it's stress; if I've found a way to eliminate that perhaps it's the environmental conditions. It's just not clear cut enough for me.

But having said all of that, if it helps some deal with the pain of AS, that's fantastic. And I certainly do apologize if my comments or questions where taken any other way. For me, food is a nice treat to help me deal psychologically with the pain of AS; if I couldn't make myself feel better by eating the foods that I like, I think all would be lost for me, but then again, I AM Italian, lol.