Does anyone out there have anklyosing spondilitis

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I would really like to hear from other people with this illness as it seems that very little is known about what it is and what causes it .

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  • Posted

    Hi Felicity

    I started reading about the role of gut bacteria in my AS arthritis about 15 to 20 years ago. Dr Ebringer studied a bacteria called Klebsiella for its role in AS (and how it is fed by starchy foods!) here is the main paper from 1978 -

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1001180/

    Professor Ebringer believes that RA is caused or continued by bacteria from the urinary tract called Proteus Mirabilis - he describes a sub-clinical asymptomatic infection, so no cystitis. PsA is linked to Streptococcus. Proteus is a highly motile bacteria and can easily migrate from the urinary tract to other parts of the intestines. It's quite a recent study on RA -

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3290812/

    In the last few years there have also been clear studies that prove that wheat (a protein called gliadin) effects more than just celiacs - as it opens wide the gut lining (tight junctions - aka as TJ) to bacteria - It's not much of a stretch then to see how wheat can be a cause / entry point of these bacteria (or other undigested food proteins)! This paper describes its potential role in ALL autoimmune disease.

    http://physrev.physiology.org/content/91/1/151

    My opinion is that if the gut is damaged from NSAID or Methotrexate then no gluten free diet is going to work in a hurry. In fact memory B cells in the immune system can last for a long time once "taught" by T cells - so even with a repaired gut it can take a long time to feel any benefit of diet change or antibiotics.

    This excellent article from a Multiple Sclerosis website describes then how the process of immune confusion happens - it also mentions RA and the work of Professor Ebringer. It's really worth a read and is not technical -

    http://www.direct-ms.org/molecularmimicry.html

    Some other great resources on AS -

    Kickas.org

    Paleo diet

    http://www.sickopportunity.com/?page_id=37

    SpondyMonster

    So in summary - diet (especially gluten free), starch restriction like a paleo diet can help. I have been 100% wheat and Corn free for 20 years and drug free!

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  • Posted

    Hi there I'm 38 and was diagnosed 10 years ago hope your feeling well anything I can tell you that will help just ask and I will try my best hugs.

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  • Posted

    Hello -thanks for replying- its good to hear from another sufferer. I was diagnosed 6yrs ago but realised that I have in fact had it since my teenage years. I'm 60 and manage it at the moment with just Naprosyn. I dont know how long this will be enough but its ok for now.

    I exercise -swimming - aqua aerobics and some stretching exercises based round yoga to keep my back strong. Its the tiredness that is the worst symptom- do you ffind that?. I still work and am on my feet all day which is good for me as sitting down can really make my lower back hurt and my hip which has been damaged by the anklyosing. What drugs are you taking?

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  • Posted

    I'm not a canditate for mainstream drugs as I'm too sensitive to them. What worked for me was a series of spiritual/hypnosis sessions which seems to have halted the disease. I manage the discomfort of the damage caused by the disease using various creams (DMSO and Topricin) and Ayurvedic oils (Maha Narayan and/or Flexn oil).

    I heard that swimming and aqua aerobics are the best forms of exercise, but walking is most convenient for me. This disease seems to be more common among Northern Europeans and those with gastrointestinal problems. Some researchers reckon that long term intestinal inflammation, such as inflammatory bowel disease (IBD), allows bacteria to enter the damaged bowel wall and circulate through the blood stream. The body's reaction to these bacteria may induce additional problems such as inflammation in the joints and/or spine, skin sores and inflammation of the eyes. This hypothesis is neither fully understood or confirmed by thorough scientific study.

    I noticed on the patient.info site for this disease that they mention it mainly affects the lower back. I'm not sure if they are including the sacroiliac joints, but that is where it started for me which was first diagnosed at age 60.

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  • Posted

    I've been on many anti inflammatories but the only one that seems to help is nambumatone then I have been on anti tnf humira,embrel and simponi I'm currently waiting to start infusions. This is as well as painkillers tramadol etc.its good to hear your keeping active that does help
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  • Posted

    Hi. My son and I both suffer from AS and actually were diagnosed 3 days apart from each other. I have tired both humaira and am currently taking enbrel. My son was on remicade and humaira but sadly has had reactions to both so as of now is on no bio med. His disease has already fused his spine and has wrecked his hips. I recommend that if you can to take (if your doctor has prescribed it)bio meds. Even tho my disease is fusing my spine and my hips are showing signs the medication does help. However it is a personal decision as the side effects can be really bad too. I think that the one thing that isn't really discussed is that's this disease can attack other areas of your body. It is a rare disease and so far I've only met two other people with it (not including my son) so it is great that there are places like here that you can talk to and who get it cause they are going through similar issues. Best of luck and take care
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  • Posted

    People keep saying this is a rare disease but I'm not sure thats true - my feeling is that many more people may have it but it goes undiagnosed becuase it gets confused and dismissed as arthritis - doctors kept telling me thats what was wrong until I insisted on seeing a specialist.

    Has anyone tried a no starch diet? I tried a while ago but gave up as I love bread , pasta and root veg but am trying again as it seems there is a connection - who knows - its worth a second go and this time with more will power!

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  • Posted

    I do agree with you about it taking a long time to get diagnosed but I still think that it's a rare disease because once the disease has advanced along there is no mistaken what it is. I have never tried the no starch diet as I too love starch. It does seem weird that something you eat could effect this disease. Has anyone out there tried it.
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  • Posted

    Hi everyone. I'm new to this group. I am 30 and have suffered back pain and knee pain to an almost debilitating stage and the fatigue can be immense. I've had this since I was 17ish. Quite often out of nowhere my kmees will 'pop' or 'crack'. This can be when I'm walking, starting to sit, try to kneel or even stand still! Sometimes the pain is horrendous. I've also noticed my back has become less flexible over time (in fact my whole body). My calves feel heavy and my feet hurt like crazy. I find it hard to sit for very long without my spine hurting. My wife has tried massaging my back, but she hates it because she sees the pain I'm in. I have been to a Chiropractor, but I seemed only to get worse! I have been to the Dr and they seem to only want to look at one thing at a time rather than collectively. However, I do get some violent jolts or shakes which has been diagnosed as Myoclonus. It has been suggested by one Dr that I may have Fibromyalgia, however, I read through the literature and although some of it sounds familiar I'm not so convinced. By chance I then read an article in my localnews paper drumming up awareness of AS. I'd never heard of this before so I googled it and I would say the symptoms described struck a chord with me. I'm yet to discuss this with my Dr. Has anyone else found the same awkwardness in regards to getting to the bottom of what their suffering from? I'm convinced my mother also had it, although it was never confirmed. I can remember how much of a struggle daily life was for her. One Dr even tried telling her she was a bored house wife and that she needed to get out of the house more! Unbelievable. Anyway thanks for reading this, just trying to build up more of a picture of what it is I have :')
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