Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Have you experienced improvement with diet change?

I tried low/no starch for a couple of months, without any positive trend. But several have had success, so it's worth a try.

John

I went to the facebook page you suggested and hit the join button. Will I then receive an acceptance from them? I need to get on the ban wagon with NSD for my family.

Leanne

Hi, Leanne--You should get invitation soon, but if You are having trouble, please let me know.

HEALTH,
John

Diet saved me when I had to come off of meds due to elevated liver enzymes 15 years ago now. Took azulfadine for 7 years that worked very well for me, but my liver said no more and at the time TNF meds were not prevalent or an option.

No Starch Diet has been my 1st course of action last 15 years and doing quite well with it.

My father had AS and fused entire back and neck.. he took Celebrex after having to come off stronger meds due to ulcers. He enjoyed a pretty good life, AS did not present as many issues after he was fused it seemed.

One thing my father taught me was to stretch every day and posture was important. Although he was fused, he was fused upright. I strecth every day for 15 minutes and be sure to watch my posture.

Best to you on what you find that works for you.

Tim

Personally I am not a believer in diet as a way of treating A.S.
I do however about 30 minutes of physiotherapy exercises every morning. These are exercises that I have learnt over the years from physiotherapists that have treated me. I think we should all do some sort of exercises and make them as normal a part of our day just as normal as brushing our teeth is.
I have not done as well as your father Tim and my back has a pronounced typical A.S. stoop. I did have spinal surgery to correct the stoop and I was just about as straight as it is possible for a man to be. Unfortunately the surgery failed and the stoop soon returned (too long a story for now). Still at 70 years of age a stoop is the least of my problems.
So as you suggest Tim whatever works best for you.

Yes

(warning, this turned out longer than I expected and also got a little graphic, my apologies)

I often wonder if we really all truly have AS or if there isn't some different things going on with many of us. Because unlike RA or say, Lupus, the symptoms AND cures are just so varying.

I am one who has not been helped by diet changes. But then, diet is already a problem for me in that there isn't many foods that I even like. I did try NSD but many foods just upset my stomach. And most of those foods are the ones that a person would eat on a NSD or LSD.

Having said all of that, most of my symptoms seem different then many here. I do relate, because there was a time when I could not get out of bed for the pain and stiffness. And while I do still have pain, mostly just SI joint which is helped with opiates and a kenalog injection once or twice a year (in the arm, not in a joint). So that is not what is currently keeping me down.

For the record, I am HLAB27 positive. It took me 8 years of being sick to get that DX. I immediately went the antibiotic route after I found out, because I had know for years that a round of abx would always make me feel better, even before I actually realized I was sick.

I have been on several abx over the years but to begin with I went with the Clindamycin IVs. I had immediate and remarkable improvement even though all testing showed negative for infection. I continued those IVs off and on for a few years and did pretty good.

Then suddenly I had a urinalysis come back positive for Klebsiella. It was a routine screen because I was going in for surgery for adhesion removal. So my doc invited along a urologist.

My bladder was absolutely filled with infection. He said I had that infection for YEARS. I know in the 10 years prior I had at least 5 urinalysis, all which came back negative in spite of the ravaging infection he found.

He cauterized my bladder and I went on Cipro and have used that off and on along with some occasional doxy. And have done great, all things considered.

Then last May I noticed that my urine had a really strong smell. That was followed by a horrible genital area odor every morning. Finally one morning I woke up so sick, it was a Saturday, so my husband took me to the ER. They swabbed for infections, did another urinalysis which both came back negative after their incubation periods. In the meantime the doc gave me an IV of Rocephin, a handful of Zithromax and a 10 day supply of MonoDox (which unfortunately my new insurance will not cover. Too bad because it is SO much better than regular doxy).

After 5-6 days, all the symptoms had resolved. But of course I had no idea which antibiotic had done the trick. Or where the infection was, or what it was.

Within 4-5 weeks it was back again, full force. My husband happened to come down with a really rare UTI at the same time. He was running a fever of 102. I NEVER run a fever. He went to urgent care and they sent him home with Cipro so I went ahead and took my Cipro too. We both got better after the Cipro.

But his UTI was so rare that he got sent to the urologist. So I made an appt too. Because I had a second scope just a few years before, he decided I was fine. He tried me on a few different abx, neither of which I could tolerate. So back to the Cipro.

And back came the symptoms. All tests still negative. By then it was time for my annual GYN appt and he recommended this super duper test called a One Swab. They check for everything and they check it for 3 weeks and it costs a fortune.

But finally, finally a test that came back positive for two different infections. And yes, the main one was klebsiella.

Now all these symptoms I have had this last year are NOTHING like any other vaginal or urinary symptoms I have had in the past. And the symptoms were also nothing like a normal UTI or vaginal infection (except for the odor).

They called in a script for Ceftin. I took the first dose on that Friday night. Saturday morning I woke up and my urine was green and smelled like nothing I have ever smelled before. But after that, I got better and better. It took about 5 days for the swelling to go down in my lymph nodes. But I finished the last abx on the following Friday. Saturday was the best day I have had in 20 years. I felt GREAT. No symptoms of anything, I just felt like a normal person should feel.

That was last weekend. Now the symptoms are slowly returning again. I called my urologist last week and he basically said that it is coming from my gut so it isn't his department.

I have no GI symptoms at all except some constipation from the pain meds. I realize that it doesn't mean that is not where it is coming from. But I do not understand how it is getting into my bladder. I am fastidious with my personal hygiene and being as I never have diarrhea, it seems suspect to me.

So, just exactly what kind of a doctor would I see for this? If it is coming from my gut, there is nothing that can be done about that except to continue abx. My Rheum doc will give me any abx I want, but I have to know what I need and what to ask for because he does not specialize in these infection related illnesses. He certainly is a believer since he met me, but most of his patients don't seem to fall into the infection category, or don't have the patience to try it.

Anyway, it seems the Klebsiella became resistant to the Cipro or morphed probably because of the Cipro. But I honestly don't know which way to turn at this point. I guess the Ceftin will work for awhile, but what happens when that goes bad? I feel like I am doomed to eventually die from this infection.

Considering that Klebsiella isn't a problem for just us AS folks, you would think they would be working hard to figure out a way to at least have better drugs for it. I suppose if you are HLAB27 positive and have Klebsiella, the chances of getting rid of it permanently are not good. Unless you are one of those lucky enough to respond to the diet. But what about the rest of us?

Uhhh....to answer the original question about diet. No, it has not helped me. If you managed to make it this far through this post, bless your heart.

Jax

Hello, Jax:

Because You are HLA B27 positive and have extra-gut infection by Klebsiella, the DIET ALONE cannot be expected to work. And You are left with an occult infection (that is "sub-clinical" and not detectable) that will continually produce symptoms of AS, despite dietary starch abstinence.

Please contact The Road Back Foundation for their reference to a local physician who is able to prescribe antibiotics for You to treat AI.

Klebsiella does not become resistant to antibiotics, but resistant bacteria "select out" and form new colonies, especially rapidly in a person eating starches (about 1 year for Gary K.).

I have used Cipro for 18 years and fortunately not yet developed resistive colonies (I HOPE) because I was very strict with diet while taking it and similar bactericidals.

After having AS for many years, diet is not very effective until the Klebsiella colonies are taken down; it took me about three rounds of Cipro at 11 days each and very strict diet, but I was then able to maintain total remission from NSD alone.

HEALTH,
John

Hi John,

Thank you for all the relevant info. That is very helpful!

I have tried contacting Carol Sinclair, but her website is offline and I have not been able to find any contact information. Do you have any idea on how I can get in touch with her?

The study on Klebsiella done in Denmark, do you know where I can find this?

Thanks John. I have already been down the roadback.org road. I even made the trip to Iowa to see Dr Sinnott. MOST of the roadback Drs are not all that familiar with AS treatment. Even Dr Sinnott was not. RA and the others, yes, but not AS. They just want to give you Clindy IVs and follow it up with some Doxy or Minocin. My own rheum doc is more advanced than most of the docs out there.

Since I wrote this first post I have been in to see my family doc (internal medicine). He has an Infectious Disease doc who he swears is way different than the rest of them out there. So I am going to give him a try. If he understands the mechanisms of Klebsiella and is also willing to treat me even when my test results show nothing, then maybe he will be able to help me. And at least for now I do have that one recent swab that proves I have Klebsiella.

Right now the Ceftin is kicking the heck out of this infection like Cipro never did. So maybe Cipro was never the right antibiotic for me in the first place.

I am already as low starch as I can get and not starve to death. I have lost 15 pounds the last 5 months. So far that is ok, but another 5 pounds and I will be getting too close to too skinny.