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Thread: help... I've been diagnosed with Ankylosing Spondylitis... damn CRP high! page

  1. #1
    Nossar's Avatar
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    help... I've been diagnosed with Ankylosing Spondylitis... damn CRP high!

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    Hi everyone!

    I'm back from a one month funny trip (with lots of excursions and activities) to my local hospital with a CRP of 144 and a VS of 136/201... which made the doctors believe I had a severe infection.

    As it turned out, I had a very strong flare up of ankylosing spondylitis which was then diagnosed at the age of 34 after 8 years of begging the doctors for an answer to my pain and lack of sleep and tremendous fatigue...

    In fact I had forsaken traditional medicine and turned to the primal lifestyle, I tried and felt great. I was sick twice in 8 months compared to my usual once every three weeks. I felt less fatigued, I started going out the way I used to, I had less brain fog.

    I don't understand the huge flare up I went through...

    I wish others with spondy could share their experience and how primal living has helped them through it as well as its limits.

    I'm currently on 200mg of bi-profenid a day which is a NSAIDS which is a life saver, really... but I want the inflammation to subside and never come back (god, I swear, it hurts like hell) or rarely...

    I also have thyroiditis (moving from hypo to hyper and not fixated yet) and they suspect Crohn's disease which will be further investigated once I have recovered a little. Work is out of the question for the moment. MS might be a possibility too... I hope not!

    Also I'd like to know what supplement you take or advise me to take since I feared my supplements gave me that flare up (my colleagues think that too because French people usually take vitamins that bring 15% of the daily recommended intake). I took the following:
    _Source Naturals Life Force Multiple (between two and four a day)
    _O3 (4 pills a day up to 2 grams a day but I never eat fish, I can't)
    _Vit C (2 grams a day)
    _Whey (25 grams a day)
    _magnesium with B6 : 300 mg a day / 30 mg
    _sometimes a few others like selenium, calcium or other depending.

    I'm also on medication: antihistamines (which have been stopped), Ambien (10mg), Lysanxia (it doesn't exist in the US but it is a long life anxyolitic in drops... it turned out I needed them to handle the stress from being misdiagnosed and I'm cutting on them fast... I'm on 5 drops a day now, regular intake is 60 lol).

    Here, hope you can help

  2. #2
    PeacefulWarrior's Avatar
    PeacefulWarrior is offline Senior Member
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    Blessings to you...
    AS is a rapidly progressive form of arthritis (an inflammatory arthritis) that will rob you of a quality of life if you dont get on top of it.

    Motion is critical. It is much harder for the fusion process to occur in someone who is very active, as opposed to a typical couch potato. You especially would want to do movements that involve putting the entire spine through a range of motion.

    Highly recommend you make yoga a regular and lifelong part of your routine. Also walking. The process of walking involves something called nutation and counter nutation of your sacrum and occiput, which in turn moves all of the spinal joints between.

    An anti inflammatory diet is also critical. If I were you I would from this day forward go 100% grain free.

    1) yoga
    2) lots of regular walking
    3) grain free (at the very least gluten free if you arent 100% commited to your health)
    4) find a good chiropractor who knows how to properly asses the sacroiliac joint articulation, and get adjusted regularly.
    5) when you are through this acute episode, vow to get off all toxic drugs (what some refer to as med's; that shit is poison)
    6) have an x-ray taken next yr. if it is not progressing on the x-ray, new full spine x-rays every 1- 2 years at the most. You do not ever want to be surprised by how fast it has progressed (do not ever make the mistake by simply assuming if you feel good it must be under control.

    Get it done.
    Decide how commited you are to having a quality of life 5, 10 and 15 years down the road. Put in the corresponding amount of work and dedication, and you will reap the rewards.
    Last edited by PeacefulWarrior; 06-17-2012 at 07:50 AM.
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  3. #3
    Luce's Avatar
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    If you keep a primal diet and move (pilates, yoga, whatever keeps you flexible with no jogging to be seen around) you'd be at a nice starting place.

    For the immunosuppressant drugs if your blood works come back ok without them then keep away from them BUT if PCR and VS come back awful then just give it a try. Being primal most of adverse effects melt away (I'm on lifelong term immunosuppressant therapy and I have some direct experience on them). Being them steroids your immune response will be diminished yes, but with a dose-wise level of meds there's no reason why you should get ill, other choice are TNF inhibitors but as said it's enough to take a little extra care in some common situations to avoid most of the adverse effects (diet is most of it, I noticed during my last business trip after falling off the wagon and getting a damn gut infection).

    Blessings and take good care of you, sometimes to not actually feel the pain is a downturn because we don't know how ill we are indeed (that's how I ended up with immunosuppressants at breakfast and for dinner everyday).
    No limits, only my will and the worlds I build.

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    Nossar's Avatar
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    Quote Originally Posted by PeacefulWarrior View Post
    Blessings to you...
    AS is a rapidly progressive form of arthritis (an inflammatory arthritis) that will rob you of a quality of life if you dont get on top of it.

    Motion is critical. It is much harder for the fusion process to occur in someone who is very active, as opposed to a typical couch potato. You especially would want to do movements that involve putting the entire spine through a range of motion.

    Highly recommend you make yoga a regular and lifelong part of your routine. Also walking. The process of walking involves something called nutation and counter nutation of your sacrum and occiput, which in turn moves all of the spinal joints between.

    An anti inflammatory diet is also critical. If I were you I would from this day forward go 100% grain free.

    1) yoga
    2) lots of regular walking
    3) grain free (at the very least gluten free if you arent 100% commited to your health)
    4) find a good chiropractor who knows how to properly asses the sacroiliac joint articulation, and get adjusted regularly.
    5) when you are through this acute episode, vow to get off all toxic drugs (what some refer to as med's; that shit is poison)
    6) have an x-ray taken next yr. if it is not progressing on the x-ray, new full spine x-rays every 1- 2 years at the most. You do not ever want to be surprised by how fast it has progressed (do not ever make the mistake by simply assuming if you feel good it must be under control.

    Get it done.
    Decide how commited you are to having a quality of life 5, 10 and 15 years down the road. Put in the corresponding amount of work and dedication, and you will reap the rewards.
    thanks for all these elements of information peacefulwarrior.

    In fact, I have a strict gluten free diet and have for two years now and almost grain free I would say. I'm also usually very active with 2/3 sports session a week on top of the rest but now I'm the definite couch potato and the pain is quite strong but I will resume sports and soft sports as soon as I can

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    Nossar's Avatar
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    Quote Originally Posted by Luce View Post
    If you keep a primal diet and move (pilates, yoga, whatever keeps you flexible with no jogging to be seen around) you'd be at a nice starting place.

    For the immunosuppressant drugs if your blood works come back ok without them then keep away from them BUT if PCR and VS come back awful then just give it a try. Being primal most of adverse effects melt away (I'm on lifelong term immunosuppressant therapy and I have some direct experience on them). Being them steroids your immune response will be diminished yes, but with a dose-wise level of meds there's no reason why you should get ill, other choice are TNF inhibitors but as said it's enough to take a little extra care in some common situations to avoid most of the adverse effects (diet is most of it, I noticed during my last business trip after falling off the wagon and getting a damn gut infection).

    Blessings and take good care of you, sometimes to not actually feel the pain is a downturn because we don't know how ill we are indeed (that's how I ended up with immunosuppressants at breakfast and for dinner everyday).

    my doctor is thinking of TNF drugs if NSAIDS aren't enough and also I'm used to living in pain, I'm enjoying the rest I can get at night from being medicated. Sleeping 3 hours a night and enduring 21 hours of pain makes you so exhausted, I'll take what rest I can now from the meds and figure out how to be free from them later. I'm only 34. I have a whole life to contemplate.

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    Check out http://www.kickas.org/ if you haven't already. I don't have AS (that I know of) but some kind of inflammatory issue. #1 is to keep your starch level very low or completely eliminate it if possible. Paleo/prinmal is great but you probably need to take it further. It's a pain, being that careful, as you can't just assume that things are without starch. I use LF milk in my coffee and mistakenly bought a brand that they use thickeners in and within 12 hours massive flare that my physio noticed immediately as it was in a place I don't generally have problems. You have to read labels religiously and learn to make everything from scratch. You'll also have to do a bunch of research to figure out unexpected sources. Such as the skins of nuts. Almonds are iffy in general although blanched are tolerated well by many.

    Look into klebsiella, which is a bacteria that is strongly associated with AS.

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    Well, it is easier here in France since we focus so much on food, there are less added things to our food and we still prepare everything from raw a lot. Like trans fats have long been forbidden.

    Without starch is indeed tough, but I guess I'd rather go without starch and without pain that project myself with walking sticks at age 40, unable to work... I guess I'll give it a try.

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    I've heard of the link with klebsellia but it is still being researched. Anyway, I have no idea what can be done with such a bacteria which normally lives in our intestines. I guess the over 50 antibiotic treatments I underwent in the last 6 years may have a link to the situation... learning now that they were useless is tough too

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    Read through the Kickas site, you'll find a lot of info, links to research, advice for following the diet. Yes it's still being researched but research is often performed for many years before anyone is willing to come out and say, "Yes, this is the cause or this could be helpful" while in the meantime people are suffering. Understand also that much research is sponsored by drug companies with very little to gain from a dietary intervention. Trying a low/no starch diet is harmless and you may well find it helpful. It may be less difficult in France, I know that food tends to be less processed there, but some things, like coconut milk, salad dressings, soups and many things you don't think would contain starches actually do. It's frustrating, but if you've been eating primal for a while you probably already prepare many things yourself.

    Interestingly, when I was a baby I had pretty severe colic which has also been found to be linked to klebsiella, babies tending to have an overgrowth. The number of antibiotic treatments you've received have more than likely contributed greatly to your health problems. Look around this site also, as there are a number of threads dealing with fixing gut flora, which would also probably be beneficial for you.

  10. #10
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    I currently have an eye on research but remember I was only diagnosed with AS a little more than a month ago so...

    Our food is less processed and we are used to preparing food. Also we've been eating primal for two years now so that we eat little starch (apart from rice and potatoes which we eat every week) and cook every meal.

    I take 10 billion bifidus or else every day to try to manage my gut flora. In October, I was put on a new row of antibiotics and ended up with a severe case of candidosis which resisted 3 complete medical treatments!!! The last raw of antibiotics taken in early April almost killed me and gave me drug induced lupus... therefore I will refuse them again until evidence is given that they are necessary (here our doctors use a test which takes 5 minutes, is very unexpensive to check wether something is viral (no AB) or bacterial (AB) but they never do!!! Now with me or my son they will

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