Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Fighting the auto immune disease!

Hi Ram
Didn't mean to imply that exercise is a cure. It is certainly not. I only meant to include exercise as one part of a management program as I was not aware that you were exercising. I am a pessimist I suppose as I feel this diease can never be cured either by ourselves or the medical profession, at least with what the understanding is of it right now in the medical profession. Rather I believe it can only be managed by looking at things like exercise and diet and environmental factors, thereby increasing quality of life as best we can.
Good luck to you.

Julie


Kodi

Yes, we are told it is incurable. That is because the basic cause(s) for the disease is unknown. A disease of unknown origin cannot apparently have a well known method of cure. Still, there exists a good possibility that many of us( not all) are probably just experiencing a "chronic hyper allergy". Just like allergies can be prevented by keeping away from the allergens, it may be possible to cure or atleast dampen the disease by identifying the allergens, whether it be food, pathogen etc. If there is one, nobody else can identify this "allergen" for us, except personal research..No harm in trying anyway!

Ram

Hello Ram,

Everyone is looking for the cure and I believe in not giving up until you find what works for you. I have had AS for at least 20 years, just diagnosed 2 years ago. It previously was located in my back but went to shoulders, hips, knee, ankles, and wrists when I was finally diagnosed. I am not fused but have suffered tremendous pain from this disease. I have been on sulfasalazine since Feb. 2002, and various NSAIDS. It gave me some relief but not enough to actually give me my life back.

Last Janruary I went to a new Dr. who was from Georgia. She told me that when she was practicing in Georgia they treated AS with flagyl. So last Janruary I started taking 500 mg flagly 1x per day on a 2 week on, 2 week off basis. The improvement has been dramatic for me. I have gone from 2 Bextra a day to eliminating Bextra just recently from my daily meds. There have been no side effects from the flagyl to this point. I am still on sulfasalazine and hopefully will be able to get off it as well sometime in the near future. It has been a very slow improvement but an amazing improvement for me. Just to test that it was the flagyl that was working I stopped taking it in October. It didn't take long for all the pains to come back. As soon as I started it again I was basically pain free.

I was on the NSD for over a year and it did not help me the way it seems to help others here. I did give it a good try and am now more LSD. I did find when on NSD that milk from cow was a big trigger. I can drink goat milk without a problem and cheese and yogurt are fine as well. So that is my story and if it can help anyone else I would be very happy. I know what works for one person does not always work for another but this has been the answer for me.


Debbie

Plant a seed of friendship; reap a bouquet of happiness.

hi ram,
just wanted to let you know that you are not alone in your fight against a cure for the spondy monster. I have spondyloarthropathy. i've been sick with joint pain since i was about 6-7 yrs old. I am now 36. the back pain started when i was about 16. i never had answers and just lived with the flares that were not that often perhaps 2 x's a year. when i had my 11 yr old not much difference, but when i had my 4 yr old...actually during pregnancy time i got the h.pylori and got horribly sick. had to have gallbladder removed. since i was pregnant they could not treat me with triple antibiotics. my family doc said it was safe and my ob argued no. either way, that whole time it damaged my gut. i now have colitis, gastritis pain, and acid reflux [nausea real bad]. after i had my daughter i went full blown about 6 wks post partum. i woke up one morning unable to roll over from my back and my arms completely stiff. talk about scary. thankfully my hubby was off that night shift and helped me. i had knee problems already and had fallen down a staircase once when i was about 22 and again at 31. little did i know.

luckily my ortho knew something was wrong. he suspected RA, Inflammatory arthritis or some form of arthritis. he immediately sent me to a rheumy. they did xrays and i was fortunate to find a rheumy who told me on 1st visit i have some type of inflammatory arthritis. just had to figure out which type. did the lyme, lupus, and reactive and hlab27. then they found i had dextroscoliosis and hlab27 positive and bulging discs, a herniated discs and a bit of osteo at the ripe age of 32. i've worked hard to find answers as i was so shocked. i thought arthritis was only for the elderly. i was so ignorant about it. i searched and found this place.

we have to find what works for us. some nsaids work, some dmards, some steroids, some exercise, some NSD diet. i truly believe that i would be completely fused if i had not been exercising. its not a cure but if i had been just in bed i'd be in horrible shape. if i keep moving i cant let it mess me up that fast. i walk several times a week and it helps tremendously. i hurt so bad but i wont give up. i follow a low starch diet too. that has controlled most of my colitis/stomach problems as well. i'm allergic to aspirin, mobic, sulfa, bextra, and everything else i cant take anything except soma [muscle relaxant]. i tried enbrel but then my hubby lost his job so there went my enbrel. it was starting to help. i have wee ones so i have to keep busy. steroids are my only other option during my worst flares. if i dont i'll go insane as the pain drives me through the roof!!

i do vent. i do get angry. i am a happy person most of the time. i try to be optimistic but when i flare it is terrible on my patience. luckily my oldest knows and has helped me so so much. but i feel so frustrated as i wish i could just one day wake up and feel good again. it's been so long. but i'm not blaming anyone. there's plenty of other folks out there in such bad shape with cancer, diabetes also fighting the-fight so I keep on trucking...
keep us posted and let us know how things go. if you can just make it through tonight, then it just shows AS that you are a survivor and will make it yet another day. hang in there my friend..
sorry for yakking, just really understood what you were saying...
take care



Adios!
Buggie

Hi Ram,

The funny thing about life is time changes as you age...at least it appears to. When you are young the future looks far away but when you reach your senior years, your youth was yesterday. You may feel like a life with AS is going to be one long painful trip and it may be, but along the way you will still experience many wonderful adventures, meet many interesting people, find enjoyment in new and different activities and, hopefully, have a familly that will bring you more joy than you can imagine. The pain and anguish of AS may help define who you are but so will many other factors and the combination will define you as a man. To allow AS to defeat you at your age is a mistake...you have yet begun to fght. Looking back, the day before yesterday I was healthy, Yesterday I had a gun in my mouth and today I am the happiest I have ever been...and it only took 36 years.

Pete



"In the game of life, nothing is less important than the
score at half time." --Anon.

Dear Ram

Your positive attitude will carry you a long way. Keep posting, a lot of people are listening.

Are you keeping a diet diary? A friend of mine years ago had many weird symptoms, which many doctors thought were 'all in her head'. She finally saw an allergist and was allergic to tomato, yeast, citrus fruits and several other things. When she went on a very plain diet, avoiding her allergens, her problems went away. (they were still there but not bothering her , when she didnt eat the wrong things). I am thinking, urinary problems, If your body is kicking out something it doesnt like, this unknown something going out your plumbing, could upset all those delicate tissues. People get rashes on their skin from poisonous plants, imagine what an allergen is doing to your insides.

By keeping track of everything you eat, you will be able to find the big offenders on your own. Remember, curry is a mixture of spices, so you might have to try each individual spice on its own.

Here in Canada, one of the remedies to keep away bladder infections is cranberry juice or cranberry tablets. The idea is to keep the plumbing system more acidic, which the annoying bacteria cant grow in. Perhaps you have a good sour local fruit that will help

take care BlueNorthern

Hey,
I was not referring to the allergy caused by the histamines. I intended allergy to mean a broad set of symptoms caused by an "allergen" not in the classical sense. You might be aware of people dying from say, a honey bee sting when the body produces a fatal system inflammatory response. In auto immune disease, we have a similar thing going on, but in a more chronic progressive manner.( and not quite acute like the bee string but more so when in a flare)

Ram

Deborah,

I found your report courageous and interesting.

1. Courageous because of the attacks, veiled or direct, on people who report to this forum that NSD / LSD failed to help or failed to help sufficiently
2. Interesting because of the success of Flagyl.

I have inflammatory bowel disease (IBD) and have been interested in antibiotics since "ciprofloxacin (Cipro) and metronidazole (Flagyl), used in combination or alone are useful for people with Crohn's disease whose condition is accompanied by bacterial overgrowth, abdominal abscesses, and infections. These [very potent] antibiotics are used for infections caused by anaerobic bacteria, which are organisms that can exist without oxygen and often cause abscesses and abdominal and gynecologic infections." "What are the drug treatments and dietary recommendations for inflammatory bowel disease?"

Also I have followed reports of a clinical trial (in New Zealand, Australia, some place (waves vaguely) over there), now closed, that used a somewhat different antibiotic therapy (RMAT) to treat people for an intestinal infection with MAP.

The microorganism, mycobacterium avium subspecies paratuberculosis, has been established in the veterinary literature to be the cause for Johne's disease, a disease causing colitis in cattle, sheep, and subhuman primate species. This disease resembles, clinically, Crohn’s disease in humans and acts very much the same. Studies in England and in Wales have shown the presence of mycobacterium paratuberculosis in milk and water supplies. It is known that infected cows secrete this bacteria in milk and hence, milk borne infection appears to be theoretically possible. -- MAP Research

I recently mentioned to someone in a private message that I had discussed possible antibiotic therapy with my internist, gastroenterologist and rheumatologist. No physician thought it advisable, as Mike would say, "It disagrees with general medical information."

It also is at the heart of controversy that ebbs and flows, waxes and wanes, generally gets people riled, to wit, "Are all spondylarthropathies one form or another of reactive arthritis?" Reactive arthritis is a disease with symptoms similar to AS. It is an infection that is successfully treated with antibiotics.

The similarities to AS of two diseases, Celiac Disease -- a food allergy and Reactive Arthritis -- an infection, are intriguing because they suggest ways that people have thought about AS. Now we have reports on successful treatment of spondylarthropathies with monoclonal antibodies (anti-TNF therapy), which adds another factor to the consideration.

I am sure that others would disagree; nonetheless, I believe that "the jury is still out" about the cause of and a cure for AS. Certainly, a difficult thing to accept when you find your life drastically affected by the disease, as "many of us" have reported.

I am very glad that you have found some relief.

Best regards,

jcwinnie



EM of MAP

there is a reactive artritis related to UTI. It´s called "Fishinger-Leroy-Reiter Syndrom" (i´m not sure if the names are right spelled). You could find more information about the use of antibiotics for UTI and Artritis looking for this syndrom.

Good luck