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I have recently been diagnosised with ankylsoing spondylitis. I have not found alot of information on treatment or prognosis of this disease. I currently take an anti-inflammatory. I excerise daily and watch my diet. I have this disease throughout my whole body. I would love to know about any available treatments or anything to help me through this. Thanks so much.
In Reply to: ankylosing Spondylitis posted by James [5380.1369] on March 10, 2006 at 09:18:40:
Maybe something here will help.
In Reply to: ankylosing Spondylitis posted by James [5380.1369] on March 10, 2006 at 09:18:40:
Hi James,
Was your diagnosis a result of a positive blood test for the "Hla B27" marker?
Do you have any symptoms of crohn's disease? It is very common to have both conditions...
Are you of eastern European descent?
Ron
In Reply to: ankylosing Spondylitis posted by James [5380.1369] on March 10, 2006 at 09:18:40:
Hi, James.
Besides all the things described as mechanisms behind arthritis, in the archives on this website, this is an autoimmune complication as well (also archives)
Let us know what you learn.
Walt
In Reply to: ankylosing Spondylitis posted by James [5380.1369] on March 10, 2006 at 09:18:40:
My husband was diagnosed with AS when he was about 40. He was in terrible pain. He was on anti inflammatory drugs, muscle relaxants, Tylenol 4, other drugs and still ate over the counter pain killers like they were peanuts. He was hospitalized for pain. Nothing worked. I read a lot of testimonies of other folks with arthritis (RA mostly). So many said a diet change helped them. I read about allergies and arthritis. I knew he went to sleep when he ate ice cream. He agreed to a diet change with no cheating for 2 months ONLY. In six weeks he was out of pain and off every medication.
I took wheat, milk, and sugar from his diet. He mostly ate veggies...raw and cooked. He ate a lot of fish, some poultry, not much beef, some brown rice and rice cakes. He took suppliments and Acidophillis and Bifidium bacteria and exercised when he could.
Twice since the original pain relief his pain returned. Once it was only on weekends. After his walk on Friday he had a frozen yogurt as a reward for a weeks "being good". That had enough sugar in it to give him pain over the weekend. The other time he had added his favorite food to his diet. That food was donuts. That time I asked the doctor to do a bowel bacteria study at Great Smokies Lab. He didn't do it quite right but there were still 3 problems found. One was the one I was looking for...Klebsillia infection that I had read was suspected in several kinds of arthritis. He also had an amobic problem and something else...I can't remember. He was back on the diet by the time the test results came back so I cannot say treatment for those problems would have alleviated his pain. You can find in a lot of alternative medicine sources that bacteria, and other microbes may be one cause for arthritis. The diet I put him on is pretty low carb and keeps the bacteria from flourishing...as I understand it.
He is now 65 and still working. He has worked as much as 7/12 for months without pain. He is a supervisor in a factory and on his feet a lot. He has NO deformity. He can eat some wheat and dairy now. Still cannot eat sugar without problem. He still does vitamins and beneficial bacteria.
There is no doubt in his or my mind that if he hadn't changed his diet he would have become disabled and lived a life of pain and suffering. He takes no medication for Ankylosing Spondylitis, no pain killers. It is history! :OD
In Reply to: Re: ankylosing Spondylitis posted by Barbara J [2145.236] on March 11, 2006 at 10:10:31:
Interesting post, Barbara. I thought starches really aggravated the condition but dairy for some people even more I guess. I have read that infection is the underlying reason for some of these chronic problems and Ron is always bringing it up from his research. Did anyone attempt to use an antibiotic against the Klebs? Not that I'm sure there is one but monocycline is often used for autoimmune conditions.
In Reply to: Re: ankylosing Spondylitis posted by Sally [1945.1192] on March 11, 2006 at 16:42:46:
He WAS treated with a medication suggested by the GS lab for the amoeba and the Klebsilla infection, however he was back on the diet by the time the results came back so I don't know if the meds alone would have worked. It took six weeks for the diet to work the first time. This was probably 15 years ago and I can't remember how long he had been back on the diet after the doctor ordered the bowel bacteria test and the test results came back. He says he was beginning to respond to the diet when he started the meds.
Would the meds alone have solved the problem?? As I understand it, folks with the HLA B27 gene problem keep getting reinfected so a continual diet change would be necessary to keep the infection down and to stay pain free. That is what he has done.
I have no idea when he picked up the amoeba. He probably got that eating salads. ??? But because sugar was the problem with the weekend only pain, I can't think the amoeba had much to do with this second problem because he was back on sugar. ???
He does still work, even double shifts sometimes. I make him salads with fish, poultry or beans, give him rice cakes and a fruit through the week. He pretty much eats what he wants on weekends or when he doesn't work, except sugar.
At the long side of 65 he still has no pain. He works 50 weeks a year, has lots of energy, has no plans to retire, and most don't think he is that old.
In Reply to: Re: ankylosing Spondylitis posted by Barbara J [2145.236] on March 11, 2006 at 18:11:25:
Glad he was able to help himself. I wonder if the sugar is the starch connection I read about, actually vice versa. How did you determine the HLAB27?
I'm sure it would be impossible to avoid microbes short of living in a bubble, if that.
I have a friend from Mexico that has recently found she has A.S. so the Eastern European decent someone mentioned doesn't apply. I'm glad your hubby conquered the problem for the most part.
In Reply to: Re: ankylosing Spondylitis posted by Sally [1945.1192] on March 11, 2006 at 18:24:40:
I can't recall where I first got the HLAB27 information. It has been a long time since hubby was having problems. I haven't written about AS in years and years. (I am 65 too and I don't eat as health a diet as he does. My memory isn't what it used to be.) ;o>
I check out AS from time to time and place to place. I saw one BB where they were talking about pain killers. Folks were discussing who was taking the most narcotic for pain. ??? It is soooo sad. CHANGE YOUR DIET FOLKS WITH AS!!!! What can it hurt to try for 2 months??? If it doesn't work your body has not been harmed at all as with so many medications. If it does work you will be pain free and will have lots of medication money to spend for fun things like new dancing shoes. ;o>
When I wrote about this online years ago I was in contact with a couple of Native American Indians from one of the Dakota's with AS.
I also found a lot of people wouldn't give up sugar to be pain free. They would rather take medication and eat what they wanted. Even my high school friend's husband is disabled with AS and wouldn't give up his chocolate candies for anything.
My husband is English/German.
In Reply to: Re: ankylosing Spondylitis posted by Barbara J [2145.236] on March 11, 2006 at 19:27:05:
Yes, Dr. Stoll always says that to get well it will be
something you DO not something you TAKE. There are lots more takers than doers, unfortunately. Thanks for sharing that. It is kind of a testimonial.
In Reply to: Re: ankylosing Spondylitis posted by Barbara J [2145.236] on March 11, 2006 at 10:10:31:
Thanks, Barbara!
Walt
In Reply to: ankylosing Spondylitis posted by James [5380.1369] on March 10, 2006 at 09:18:40:
Thank you so much for all the advice. I have been following the diet with the exception of eating some whole grain bread. With changing my diet, I have to say that for the past week I have encountered days of more discomfort and pain then I had prior to ever changing anything. Is there some further advice or time frame that I should be looking at.
Regards
James
In Reply to: Re: ankylosing Spondylitis posted by james [5380.1369] on March 20, 2006 at 09:50:38:
James,
Your experience already proves that there is a relationship between your AS and your diet--not necessarily what that relationship is.
Walt
In Reply to: Re: ankylosing Spondylitis RELATIOINSHIPS. posted by Walt Stoll [93.1889] on March 21, 2006 at 06:45:43:
Hi Walt,
What do you suggest I do at this point. The pain has been very bad. My discomfort level is very high. Any other suggestions. Thanks
James
In Reply to: Re: ankylosing Spondylitis RELATIOINSHIPS. posted by Walt Stoll [93.1889] on March 21, 2006 at 06:45:43:
What are you eating? What did you eliminate from your diet?
In Reply to: Re: ankylosing Spondylitis RELATIOINSHIPS. posted by JAMES [5380.1369] on March 21, 2006 at 08:33:25:
James,
The first thing I would do is start at least 3 times a week doing underwater aerobics. Also start total elimination of dairy and wheat and let us know how you are doing in about a month.
As soon as you have any extra energy to exert, start sereious SR at least twice a day (se the home page, the glossary and the archives).
Walt
In Reply to: Re: ankylosing Spondylitis RELATIOINSHIPS. posted by JAMES [5380.1369] on March 21, 2006 at 08:33:25:
Hi James, why don't you try the elimination diet. It's archived and you eat certain "safe foods" for a few days and then start adding other foods. If you get an immediate reaction, you know what to stay away from temporarily anyway.
In Reply to: Re: ankylosing Spondylitis RELATIOINSHIPS. posted by Barbara J [2145.236] on March 21, 2006 at 16:00:55:
Hi Barbara,
I have eliminated - sugars, white bread, pasta(although I tried whole wheat pasta) and rice. I am eating - oatmeal(w/brown sugar) fruit, salad, red meat, chicken, turkey, whole wheat and multi-grain wheat bread. Last night I ate egg noodles and today I feel that was a big mistake, as I dont feel well. Thanks James
In Reply to: Re: ankylosing Spondylitis RELATIOINSHIPS. posted by Sally [1945.1192] on March 21, 2006 at 20:44:35:
Hi Sally,
Thank you so much. I have found that diet and I am going to try it. Just alittle harder to try while Im working. I am going to attempt it in 2 weeks as I will be off work for a few days. Always look forward to any information you can share. James
In Reply to: Re: ankylosing Spondylitis RELATIOINSHIPS. posted by Walt Stoll [93.1889] on March 21, 2006 at 16:39:55:
Hi Walt,
Thank you for all the information. I am going to the gym 5 days a week. I am going to look into my options to underwater aerobics. Do I need to cut out all wheat and oat products? As for dairy, the only dairy I have is 1 cream in my coffee approx 2x a day. Will that much cause me problems. I look forward to any information you can help me with. Thanks so much Walt James
In Reply to: Re: ankylosing Spondylitis posted by james [5380.1369] on March 20, 2006 at 09:50:38:
What have you eliminated? What have you added to your diet?
You might be in withdrawal from an allergen. You might be in withdrawal from sugar. You might be having some die-off. You might have added a food that you are allergic to that is causing bone pain.
Might you write another note and put it on the BB. This one is buried in the Archives at least for me.
In Reply to: Re: ankylosing Spondylitis RELATIOINSHIPS. posted by james [5380.1369] on March 22, 2006 at 08:52:25:
James,
The most accurate way I know of to determine whether it is worth while for you to eliminate dairy and wheat is by TOTALLY eliminating both for a couple of weeks and see what you experience. If you only dipped your finger in the cream, every third day, it would be enough to ruin your therapeutic trial.
Youi definitely need to get out of the gym and underwater!
Walt
In Reply to: Re: ankylosing Spondylitis RELATIOINSHIPS. posted by Walt Stoll [93.1889] on March 23, 2006 at 06:51:53:
I have continued with the diet now and I have to tell you I am no better if not worse more days then not. Is there something else I can do?
In Reply to: Re: ankylosing Spondylitis RELATIOINSHIPS. posted by James [5380.1369] on April 12, 2006 at 14:39:44:
James,
How are you progressing with your SR? It is, by far, the most important single thing for you to do at this stage.
Start an ACCURATE diary of everything you eat, and when, for a few days and send it along for us.
Walt
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