Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; NSD alone is not effective. What else to do?

I hate to say it, but after 4 years of NSD I'm still in pain and had lost a lot of range of motion. Positively, I was able to stay off the NSAIDs for this period. I had great hopes for the diet and was very enthusiastic but I've never been able to achieve prolonged stable remission on a diet alone. The best time I had, it was about second year on the diet. After I added Enbrel for an year it was simply marvelous. I got back my energy, sleep, pep, gained a bit of weight (I always lose it usually, never gain ). Then I weaned off Enbrel gradually and was Ok for half an year or so with occasional flares. But it gradually gotten worse and worse, flares were more often and more prolonged until I got back where I was before. Only this time I decided to face pain without meds. That's where I lost the battle - in spite of all my efforts AS severe damaged my mobility during that time. I tried forcing exercises through pain. I fasted - it gets a bit better, but as soon as I start eating (anything), all comes back. I tried antibiotic protocol - zero effect. I turned to naturopaths and alternative practitioners, no gain there. I lost sleep, weight (150lbs at 6'), and hope. I'm exhausted, tired, angry, and out of ideas... I don't know what else to try.

So I gave up: ordered Enbrel today and right now am about to make an injection. And I feel like a loser. Please forgive me my treachery.

Why am I whining about this? I'd really want to hear some fresh ideas, cause I have none anymore. If it's not only starch, then what?? Some practitioners told me that it's in my head. I do correlate adrenaline spikes with my flares (stress, physical exercise). But brain, mind - how? For that matter, blood is showing good, in May I had lab tests done that showed excellent results but I felt like [**BLEEP**].
Sure, we're here to refine and perfect NSD but let's think out of the box. For some it worked wonders for some it didn't work that well at all. Why?

Nothing wrong with injecting - you have to function to live!



1. Did you cut out lactose as well?

2. Try eliminating a few more things or try eating all of the same kind of food for a few days - I discovered that (possibly due to allergies and a leaky gut) I get all sorts of nasty peripheral pain from beef and eggs, which I could not eat as a child. It took many tests to confirm this.

3. Did you try testing everything religiously with iodine? I react to pepper, many spices and lots of supplements that test positive to starch yet claim to be starch free....


If the fasting works temporariliy I would say you are on the right track. - I would suspect that you might be reacting to something that actually isnt starchy. Who cares why, if you can find it and eliminate it you are golden. Try fasting until you get as good as you can get and then add *only* one thing back at a time, adding every few days until all the sudden the pain comes back. That will tell you alot. It took me 5 times testing the eggs before I finally stopped eating them - I was upset because they are such a good foodsource but I just cannot eat them. Best I can figure is if you are allergic even slightly to a food, it can inflame your intestines and allow the body to see more Klebs, keeping your pain levels up.

Good luck and keep us posted! You have made an awesome effort to get this far!

Hi Airman,

Sorry to hear that.... but you should not hang your head, you are still Kicking and doing all you can. IN my book you have the right attitude. If you need Enbrel and diet then that may be what it takes.

Bill brings up good points... have you eliminated dairy? Are there are processed foods? Food allergies? Too much sugar?

Just some food for thought. If you want to throw your food diary in front of us that may help us with some more advice.

Best to you, keep on Kicking!

Tim

Airman,
You just gave me the courage to face another round of fasting. I felt worse and worse as I fasted, after the flu; but my stomach and gut is much smaller and I am a bit more spry. I think I must fast and then add only only food until I am better.
Hang in there my friend.
I understand the pain and frustration, you are not alone and it is worth it to get our health back.

NSD alone was not effective for me either. Eliminating starch prevented my sacrum from becoming inflamed, but I still had pain and stiffness, mostly in the neck, shoulder and upper back area. My doctor said it was related to AS, spinal arthritis.

But, I discovered it went away when I eliminated sugar (including dairy and fruits) while healing for my Candida/fungus infection. So I mainly eat meat and veggies now. I can only eat roots or nightshade veggies in strict moderation. Absolutely no processed meat or foods, as they most likely contain starch.

After 10 months I can now also eat fruits (YES!). But dairy is like poision to me. A few other things I had to avoid are nuts, alcohol, vinegar and mushroom. These are bad due to mold or yeast, and cause me problems, although I will consume on occasion in moderation now.

Airman,
Sorry you are having such a hard time. I am also allergic to eggs which is hard on this diet. Also almonds. I've given up all nuts for the time being because I can't seem to get pain free even though I've been 6 months NSD. My diet is very limited right now, but I am definitely better then before the diet (pain level about a 3 instead of the 8-10 it was).

So, I agree with Bill, maybe you have some food allergies that are tripping you up. Please don't feel like a loser for using enebrel. You are making huge efforts, I just hope you can figure it out.

Annette

My rheumatologist thinks food intolerances in general are more to blame than any one specific food. I tend to agree. I'm allergic to nuts, avocado, peanuts, sulfites, and other stuff, too. And I find that I'm intolerant to grains. So, like you Annette, I'm pretty limited in what I can eat on the NSD. It's all very interesting, but kind of a downer when you can't eat ANYthing. But I'm game to try whatever in the name of feeling better. But it sure gets old sometimes, don't it? :|

Hey, airman:

Initially, I had "mixed" albeit good results on NSD; enough to prove that I was better off, but I am impatient, so I combined NSD with antibiotics in cycles to avoid resistive strains. This, after consulting several people working in the medical field and who should know--microbiologists, biochemists, virologists and even a vector ecologist.

The antibiotics worked almost immediately, but I also kept improving, in many ways small and large, for more than two years using both diet and these drugs. The diet might prove the germ cause of AS, but the antibiotics certainly reinforced this, especially whenever I experimented with new agents that were both cheap and available but I had not yet determined their effectiveness against our nemesis bacterium. Later, checking these out, drugs that have no action against Klebsiella also do no good against AS.

There have been other people who did not respond with diet alone, although fasting worked for them. Much later, they posted that the NSD could not work until after they got chelated! I hope that I don't have to recommend chelation as a rule, but in some cases it takes this level of searching to find the answers. I know of an inexpensive chelation clinic in Tijuana, if you are interested in this and a friend is setting one up in Philippines, also.

Of course, several of our members have decided to use Enbrel, and I like this drug very much but it is important to maintain--generally--a low starch regimen while using this drug so that less will be consumed against the targeted cytokine and perhaps like one person in particular you could lower the dosages or frequency of use so that the drug will have a much longer useful lifetime. Similar drugs seem to cause development of drug-specific antibodies after many (40 on average) exposures, so some method should be employed to avoid this.

SZ is a good option, if it is tolerated, but especially in combination with LSD.

Hope whatever you decide upon goes well for You,
John

Hi Molly, Yes, it does get old. Hopefully it will get easier. I tested allergic to so many foods that my naturopath suspected I had leaky gut. This was 2 years ago before I ever heard of leaky gut and before I was diagnosed with AS. It sounds like as we heal our guts we can tolerate more food - maybe even small amounts of some allergy foods. Here's hoping.