Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; 6 Month Update

HI Krishna,

Thanks for your concern. I am very dissapointed but will carry on with LSD and add the methotrexate for some pain relief. (if it works?) I will keep you posted on my progress.

Deborah

There is no drug stronger than a good attitude.

Deborah,
don't think you have failed, it is the diet that has failed, so far.
When I first started LSD I allowed myself one thin slice of toast with breakfast, and one banana during the day, but the toast was eventually stopped after a couple of years. I would say that provided you stay clear of wheat flour products and potatoes you are LSD. That was Ebringer's definition.
What would have been useful to know is how your ESR readings might have varied. Have you had any results? Your own assessment is of course subjective; it is possible ESR readings may have seen some improvement.

...if they be strong or able to endure physic, yet it brings them to an ill habit, they make their bodies no better than apothecaries' shops; this and such-like infirmities must needs follow.

Hi Deborah

Sorry to hear it hasn't been what you'd hoped - am pleased you're going to stick with the diet though in the form of LSD -- as both Sue and Ted have said, sometimes it does take longer - they are the living proof of that.

I am confused here though Deborah? In a recent post of yours you said that the diet and Sulpha had made a 60% improvement - at the time I thought you'd cracked it and I was very happy for you, so reading this has been a downer

As far as reintroducing starches goes, when I did it originally I tried little bits of most things including wheat, but quickly found wheat was definately the worst thing ever. Whatever you eat, avoid processed stuff like the plague - I'm sure all those additives and preservatives do more for keeping the klebs alive than keeping the bugs growing in the actual food!

Keeping it fresh, unprocessed and healthy should max out your tolerance levels too - and be aware that these may change. You'll know when, believe me! I had a pretty high tolerance anyway, but it did change, every time. My signs were ankle swelling, then GI symptoms, then (if I was *really* stupid and hadn't got back on track by then) joint stiffness, then pain. Getting back to basics can resolve it, but the quickest route back to base is definately the apple diet.

Good luck with it, keep us posted!

Take care,

Jan





The first and best victory is to conquer self

— Plato

Hi Bilko,

Before I had a dx in December 2002 my ESR was 21. That is actually considered normal. It is now between 8 and 10. I have it done monthly as I am on sulfasalazine and have to have regular blood checks. Most of my blood work is normal except I am HLAB27 pos. So yes the pain and ESR have decreased but I am hoping and wanting more improvement yet. Am I asking too much? I am only able to work 3 half days a week. Previously I worked full-time. I am very limited in activities and seem to be frequently in pain. I just want my life back and am getting impatient to see further improvement. I suppose eating starch isn't going to get results any quicker but like I said I am just testing the waters to see how much difference it makes.

There is no drug stronger than a good attitude.

HI Jan,

No I am not throwing the baby out with the bath water, just testing. As my disease follows a definite pattern I think it will be easy to tell. Typically I have a good day, bad day,good day, bad day and on and on. The good days can be so good that I have no pain and the bad days can be intolerable. But there is a distinct pattern and it is rarely broken. I THINK I may have my answer already. Yesterday was a bad day, by the end of the day very bad so today should be a good day. It is not as good today as it could be. Could be the 2 bananas, and the sprouted wheat toast I had for breakfast? I will continue on the week with my sprouted wheat toast for breakfast and decide then if this is a bad idea. Maybe I am being too impatient but enough is enough. I have been on sulfasalazine for 81/2 months and the diet for 6 months. I guess I figured by now I would have it under wraps. Thanks for your reply and I will keep you posted.

There is no drug stronger than a good attitude.

Hi Deb,

Sorry that the diet isn't work too well for you and I admired your spirit for keep trying .

It's always good to add more veggies and fruits into your diet no matter you have AS or not so I think LSD is still a good diet to go.

Good luck,

Sinta

Hi Sinta,

Yes you are right. You can never eat too many fruits and vegies whether you have AS or not. I actually enjoy them though at times I get tired of soo much meat. But I have gotten used to it and who knows maybe if I stay LSD in 2 yrs I will have improvement. I saw I new rhuemy last week and she said that AS is a disease of thirds. One third get better, one third stay the same and one third get worse. I think I am in the stay the same ( maybe get a little better) group. At least I can be grateful it isn't getting worse. Thanks for your concern and reply. It is appreciated.

There is no drug stronger than a good attitude.

Hi again Deborah,

Just wondering what kind of impact returning to work had on you?

I'm curious as last Monday I returned to work after almost a month off due to neck/upper back pain (which my Osteo thought was fusion - hence the quickest return EVER to a strict NSD!!! - which I know works for me)

My first day back was office-based but even so I felt it afterwards, and after the next few days I just felt I'd been knocked back 2-3 weeks, as it was agony again (well, agony without the freedom to get stoned on Tramadol!!!)<----hysterical laughing!!!

I just wonder with you being off for over a year, whether the impact of your return to work maybe clouded the impact that the diet had??

Your profile says Health Care Field, but I'm not sure what that means? I'm an RN but at senior level, so besides being able to decline moving&handling except in emergency situations, my role does give me ample opportunity to be *officially* hands-off.

Even out of a flare I'm aware of how some procedures can impact on me, for example venepuncture and cannulation - they can be killers, probably worse than lengthy dressing changes!

Hope your job gives you some flexibility, and hopefully some recovery time?

Something I find fascinating is co-workers responses. I've found I can tell a lot about a practioner by that - maybe nothing different to what I'd have known in the abscence of chronic illness in myself, but - hey, maybe I just find it more entertaining??

OK, OK, so I have a sick SOH.....

Always aiming to have an impact on someone though, make them think differently, go beyond the stupid barriers that can exist.....especially as far as chronic pain goes

Hope you are getting the workplace support and understanding you need,

Take care,

Jan






The first and best victory is to conquer self

— Plato

Hi Jan,

I am a Lab Assistant. I take blood and ECG's and do computer work. It is definetely a hands on job. It is very busy and has had me soo tired on days that I work all I can do is come home and lay on the couch for the rest of the day. The fatigue is unbelievable. I am very happy to be back to work but had no idea of the impact on my well being overall. It is good for my mental well being but hard on my physical well being. I am only back part time MWF 4 hrs per day, so it is not like I jumped in too fast. I will slowly increase my hrs. as the dr. permits.
So this week I had 1 slice of organic sprouted wheat bread with my breakfast every morning and it didn't seem to make a big difference in pain levels. I am contemplating the vegie diet that you do maybe? Not sure how to go about it though. I really believe that there is a diet component to this disease but it is not one size fits all. I have a hard time eating all this meat though it does fill me when I am hungry. Do you only eat nonstarch vegies? It seems a little limited? What do you fill yourself up with? Do you eat dairy and eggs as well? I am interested in how to approach it. Thanks for the reply and hope work isn't too hard on you.
Take care.
Deborah

There is no drug stronger than a good attitude.

Hi, Deborah,
You mentioned organic sprouted wheat bread does not give you any trouble ?
Currenlty along with Ted spending time researching Lectins ( supposed to be toxic and speculated to cause autoimmune problems ). Pls see lectins Proteins in autoimmune diseases and inflammation and The Challenging Puzzle: Extinguish the Volcano.

I wonder if sprouting of wheat destroys lectins?

Just now noticed the following from DIETARY LECTINS
"Raw and relatively unprocessed foods are becoming more fashionable among health-conscious individuals in the Western world. Given the abundance of food in prosperous countries, such persons are therefore exposed to greater doses of dietary lectins than at any time, probably, in human evolution. The current fashion for sprouting beans and grains is therefore to be encouraged in this context, since sprouting in most cases causes a sharp diminution of lectin content within a few days (17). "

Rgds.,
Krishna

Edited by krishna on 10/26/03 08:01 PM (server time).