Hi,

I have AS and so did my dad, who died way too young. I always knew I had it, but never really wanted to accept it. About 1 year ago I found this forum and started reading and started to change my diet. It's a bit crazy how much I have changed this past year and I feel stronger and healthier than ever before. I do not feel depressed about the future anymore, actually I am very optimistic now. It has been a big help to read all of the Success Stories here on this site. When I first started my search I found nothing in my own country, nothing online in my own language. I am now beginning to share what I find on my blog, so others in Denmark can also find this information.

If you have experienced improvement by changing your diet or lifestyle, I would really like to hear from you and share your story with AS sufferers in Denmark.

Please contact me! Thanks.

Best Regards
Strang

Sorry if this disappoints you strag
but I have tried diet as a way to try and gain some control over my A.S. but without any success. Still if it works for you then good luck with it. There seem to be plenty on this Forum who have had success with some diet or other.

Regarding family medical history and A.S.
I had a half brother (same father) who suffered from A.S. and my daughter seems to be showing early signs of the disease. There is a hereditary factor in A.S. and most rheumatologists take it in to account when diagnosing A.S.

Hello, Strang:

I suppose because I had AS for such a long time before I began the proper diet in earnest, it took a long time to make the diet work for me. In fact, until I combined the strictest diet with antibiotics, the diet alone did not work for me very well. After a few cycles of my own AP (antibiotic protocol), I was able to sustain total remission for many months without using the antibiotics--that is, through diet alone.

It is shameful that the medical guilds have not yet caught up with the science and that we patients must work so hard to keep the word out for our fellow spondys, but it gives us a good opportunity to interact and learn much more than otherwise.

There is a FB group related to NSD, if You are interested: The Low/No Starch Diet for Spondylitis

Good books to have are Carol Sinclair's "The New IBS Low-Starch Diet," and Giraud Campbell's "A Doctor's PROVEN New Home Cure for Arthritis," in addition to all of Professor Ebringer's papers available right here. Note that all three of these authors came to the same conclusion independently, separated by space and time (for Bayesians these are astronomical odds when the topic is properly addressed). Additionally, there are many similar references, some not yet translated into English, but all indict the primary culprit of dietary starches.

There were, by the way, some AS vs Klebsiella studies done in Denmark, as the HLA B27 antigen is 20% more frequent there (and other Nordic countries) than in mixed European populations.

HEALTH,
John

Hi John,
Thanks for giving FB for NSD.

Jay

Hi, Jay--

This is Bill Hamilton's group and by invitation, so if You have trouble getting in, email one of us to provide access. Kind of where the action has gone, but it is inconvenient because there are no permanent resource links (or...I don't know how to do this) and I would like to migrate KA to FB but have not figured out that one yet, eight--if anyone has suggestions, please let me know. I guess I don't want to force our members to join FB, so will maintain KA in present incarnation for now.

HEALTH,
John

Hi John,
Thanks for your kindness. I hope i can access it.

Regarding migration to FB from KA, I feel KA has it's own identity and probably more information. Hence, I would suggest both can be accessed by people as per their choice. Also, I feel accessing any information is easier in this type of blog than FB?

Regards.

Jay

Humira gave me the biggest overall positive improvement, but diet did help some.

I went to a naturopath and had IgA/IgG blood work done against a slew of foods and dairy, specifically the Casein protein came back off the charts. I did a lot of research on Casein and discovered that Casein sensitivity seems to be as common as Gluten sensitivity. I also read that its common for some people to be sensitive to cow casein but not sheep or goat, thus I am cow dairy free, but do eat a little goat or sheep cheese when I want cheese. I use nut or coconut milk beverage as my milk, coconut milk yogurt, and if I want ice cream, coconut milk ice cream...Coconut milk has been a Godsend for me. I noticed that my gastritis got a lot better when I removed (cow) dairy from my diet. But I was still flaring, still had joint problems, etc. But dairy was definitely giving me GI inflammation and removing it from my diet helped that.

Several years later, my rheumatologist had me get blood work done for IgA/IgG testing against S. cerevisiae (bakers' yeast, found in bread and beer...pizza dough too!). That test came back borderline but I was already on a low carb diet for my diabetes and so was already eating practically no bread or other products containing yeast. I thought that was a strange thing to test for, but did a bunch of reading and discovered that it is very common for those with Crohn's disease to be sensitive to S. cerevisiae.

So I"m on a cow dairy free, low yeast diet, and that does help along with the Humira, but I found I just couldn't do it without the biologic.

Diet change and exercise has done more for me than any meds that I have taken.

Whatever works for you then best stick with it

Strang,
I'm afraid not in my case. I've found no improvement to my A.S pain levels with eradication diets. However I have found improvements to my overall health, whilst generally eating an healthy balanced diet. Including oil fish, fruit, vegetables, meat.
The best pain results were achieved during starting my first Anti Tnf medication (Infliximab).
Although others on here have found a low starch diet to help.

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.

Of course the visit to the ID doc was a disaster. First, none of them believe in the connection between infection and AI, or between klebsiella and AS. And this one did not believe I could have a UTI and not have it show in a urine culture. Not even my urologists believe THAT. So he charged $155 and said he couldn't help me.

Since then I have written to Dr S in Iowa. I think my secondary infection scared him off from answering (I did initially hear back from him) because it seems that this particular mycoplasma is resistant to Clindamycin.

I feel ok right now, being as I am on Omnicef. But I do not know of any doctors who will continue to prescribe that for me. I have seen 4 so far. I think if my infection did not return so quickly, they would not be as concerned with giving it to me.

I have stricted up my diet. I am wondering, how long does it usually take to have a reaction to a particular food? I notice that about an hour after dinner, my hip/SI joint goes bad and radiates to my groin and down my leg. I am guessing it is something I am eating at dinner, but is that reaction too soon? Am I looking at the wrong meal?

The only gut problem I have had this last several years is constipation. I am on opiates but until a few years ago they did not cause constipation, so I am not convinced that is what is doing it now, although surely it contributes.

Since I have stricted up my diet, the constipation has gotten much worse. I react to every over the counter laxative I have every tried (very many). I usually just use a gylcerin suppository and that works fine, but now those are not working either.

Is there anything natural to be taken that can help? I really don't want to nor could I drink enough prune juice to ever help (tried that too). I would say so far the diet has helped enough that I am going to keep it up, but I need to figure out this constipation thing. And from where my next abx are coming from too. Or even what kind.

John, can you tell me how often you took those 11 day rounds of Cipro and how you knew that 11 days was the magic number? What were your signals to do that?

Thanks!

Hello, Jax:

I spoke with many microbiologists (and a few bacteriologists and even ID physicians) and it seemed an average dosing period we were focusing upon, due to the germ's reproductive cycles in humans, was 11 days. It would have been easier to use 10 days (a standard commercial cycle), but adding the extra day made a bigger difference in their models than any other possible change. It was the cycle that I chose to use and has been very fruitful if I am not really that obsessive about such a cycle--9 days could work for some and others might do 'better' with 12 days.

I took between one and two months between cycles of the Cipro during which time I did fasting, fruit monodiets, cleansing, probiotics etc, but mostly stayed on the bacteriostatic tetracycline.

Certainly, I got very lucky as everything I did seemed to work, once I began taking down existing colonies of the Klebsiella. When experimenting with antibiotics I did not always know about, but only later found they had no activity against our nemesis germ, it was obvious to me within four days or so because AS symptoms would begin to return, even with strict diet.

During a period lasting eight months after stopping all antibiotics, I was able to totally control AS symptoms using diet alone, whereas before I had gone through several cycles, diet just barely--but perceptibly--helped.

If I were still using the antibiotics, I would add colloidal silver and maybe Tanalbit to my regimen, the former due to information from Mercola.

HEALTH,
John

Thanks John, that was enlightening, for sure.

I just went and read up on the Tanalbit as I had never heard of that before. The thing that scares me there is the constipation. Seems most AS people's gut problems is the opposite of that. I see they suggest magnesium as a way to combat the constipation but that gives me migraines. I have had zero luck combating the constipation. Usually about the 3rd of antibiotics, I am ok for a day or two but before and after, things just don't move!

This part worries me a bit also:

"Tannins may interfere with the absorption/effectiveness of medication."

It says check with your doctor(s) about that part, all of whom I am sure know nothing about Tanalbit!

I guess I am lucky in that I think I am much older than most of you here. If I can just make it 9 more years! My husband will retire in just less than 4 years and if we could have 5 years of retirement together, that would make me very happy.

Diet seems to be helping pain a bit and I have slightly more energy. But it could also be because I just finished the round of abx.

John, what do you suggest when the antibiotics that I take to combat the Klebsiella are also causing a secondary infection that seems, according to everything I have read, to be highly resistant? The secondary one is enterococcus faecalis. And from what I have read, it is even scarier than Klebsiella. They have done testing that shows a significant rise in enterococcus faecalis in women who have taken other abx.

I am doing probiotics and have stuck to the diet really good. Not saying that I didn't unknowingly eat something that I shouldn't have, there seems so many variables. I put garlic powder in my guac the other night. I don't believe I had any reaction from it but I really don't want to feed these Klebsiella anything!

Hello, Jax:

It is important to decide upon an antibiotic protocol that will not cause overgrowth of C. diff, C. albicans, and many other things. I don't have any suggestions except to try and regenerate Your flora--some probiotic yoghurt, sauerkraut, kim chee, etc. Also, a cleansing should involve the enteric coated oregano oil, bitter melon, wormwood, etc. I have not studied the target germ, but it would be important to know what affects this enterococcus faecalis and get the correct agents to take it down.

Not sure of the agent You were using, but I switched antibiotics often.

HEALTH,
John

I am very upset that I had a $5000 test to finally get these two infections to show but it did not include ANY sensitivities. Ridiculous. And I know of no other test that will even show these infections.

It is very hard to try to take down an infection without knowing the sensitivities.

Slightly more hopeful today. I saw my rheum doc and he agreed to give me 3-4 rounds of both cipro and omnicef. With 11 days per round but only one round per month of one of them. My plan is to not take either of them until I wake up with that feeling that I need to be in the ER.....which usually happens not all that long after I finish a round. He was not receptive to me having any type of tetracycline along with the other two. Maybe if things go well he will let me add something like that in a few months.

I will say everything feels different this time. It's way too early to be claiming any victories. But I do think I have balanced the, ahem, female flora, that was causing problems. And the UTI symptoms, so far, are mild.

I really have no inflammation to speak of. Slightly more this week than last, but not enough to knock me down. And my energy is not as good as last week, but still better than in a long time.

So at some point I may have to eat my words (no pun intended, lol) and say that the diet IS helping.

I have been taking Floragen3 twice a day and (sorry guys) douching with organic yogurt and purified water twice a week. This is the first time I have not needed Diflucan after a round of antibiotics. And the other symptoms along those lines have not returned as of yet.

I know I need to find a secondary probiotic so that I can switch up. But I like that the Floragen3 is refrigerated and behind the counter at my pharmacy. It is not any more expensive than most probiotics. I need to make a trip to a health food store to find another refrigerated probiotic with different strains in it.

I am off dairy right now so not eating yogurt and sorry, I would not eat sauerkraut or kim chee for any reason ever. I also try to avoid supplements due to other meds I am on, worried about interactions. If the current flora protocol fails me, I will consider some other options.

It has only been 13 days since my last antibiotic, but that is already a record for me without a total relapse. At this point just saying: fingers crossed.

Just got my blood work back and my cholesterol has skyrocketed, 331. I am inclined to believe in the myth of cholesterol, but none of my doctors feel that way and now that it is this high they have pretty much demanded on go on it. Yes, I could fight, but I have to pick my battles to stay off biologics and stay on antibiotics.

Anyway, my question is this. I have COQ10 to take with my statin. I have had it here awhile and it's expensive so I don't really want to toss it for a different brand. It does say gluten free but it does have Soy/Soybean Oil in it. Could there be enough of it in few capsules to really have that big of an effect on me?

I am also a bit curious as to why most people seem to get a lowering of cholesterol when they go on low starch or low carb diets but I seem to have the opposite effect? Same thing happened to me on Atkins (years and years ago).

Hello, JaxTee:

Regret the numbers You have produced! Good approach with the physicians; keep them mollified by being cooperative as much as possible. No issues with soybean oil--it does not contain starch.

Most of the cholesterols that we measure in blood testing are produced by the liver in response to the metabolism of starches; chronic hyperinsulin condition plays some role--usually. Eventually, we have trouble processing that excess insulin and this puts greater demand upon our livers. That's an oversimplification, but how it has been explained to me: I have "metabolic syndrome" with moderate cholesterol levels and right on the edge of being diabetic. EVOO helps with the ratio and niacin in moderation (it can kick up my gout) helps lower the numbers. Good to take NAC, also. Using bitter melon, ALA, and juniper berry capsules for the diabetic issues; will report on this once I find out whether it is effective.

HEALTH,
John

Yes

Hi John and thanks,

My doc at one time did mention Niacin. But he also mentions that it can produce sweating and this last 3 years I have already had some unexplained really AWFUL sweating problems. He felt that using Niacin for me would be really counter productive. I do use EVOO.

High cholesterol was a problem for both of my parents too and my mom especially, who actually ate a very balanced decent diet. So maybe I am just one of those unlucky ones. The good news is, so far I have not reacted to this statin the way I did the last two. So if I don't have any side effects from it, maybe I can tough it out.

I am fortunate not to have any type of sugar or diabetic problems. My husband, who eats like me except adds starches, has no cholesterol problems but does tend to have sugar problems even though he eats little of it. He is not full blown diabetic, just borderline. All so weird.

Got bad news that my rheum doc fell ill. Do not know the long term outcome of that yet, but besides just being a wonderful man and me being worried about him, I have no idea what doctor would ever take over the protocol he has been using with me. Of course my main concern is for him, but I also have that other worry niggling in the back of my mind.

Thanks for the reassurances on the soy/soybean, that makes me feel better!