Ankylosing Spondylitis in remission in 3 weeks
Posted , 31 users are following.
Long story short I have been fighting AS for more than a decade. I couldnt walk without the feeling of pins and needle, I couldn't sleep because I was sleeping on pins and needles, my stomach hurt constantly, heart burn all the time, my neck felt like one piece, lock jaw all the time and if I layed down for a while I would get stuck in that position.
after years on embrel and indomethacin I stopped taking all medication two months ago and changed my diet to one that fit me. I can confidently say my AS is in remission and I just had my first burger since starting he diet 30 days ago and had no effect from the burger
i will still continue to stay on the diet becuase I just feel better
i lost 15 lbs in the last three weeks. 138 to 123 and now I'm slowly gaining it back as muscle mass because I can finally work out.
I spring out of Bed,sleep throug the nite, starting to become more flexible everyday. I will update every month to keep you guys up to date on how long I can go cured and what limits I can push on food
believe it or not week one two and three of my diet was a rotation or beef bone soup and chicken feet bone soup. I will continue to update as I go. Cheers
6 likes, 34 replies
TreatMeGently Sddsxxs
Posted
I have been gluten / corn and restrict cows milk much of time.
I went from bent double in pain, limping with sore hips, lethargy, headaches, stiff neck / sore shoulder blades and rotator cuff. By 30 I was running half marathons - and still beat my 14 year old in a sprint today at 48
I started my diet changes 22 years ago at age 26 - I am now 48.
I am so glad that you too have found that diet change has helped you! Keep us updated and happy to discuss more - as I am a real bore on the subject!
Best wishes
TreatMeGently Sddsxxs
Posted
Great stuff...
i completely agree that you are not in a temporary remission.
How can we prove anything on these forums - diet doubters may be representatives from drug companies for all we know
Please be really wary of new foods - especially starches - it sounds as though you are aware of the work of Professor Ebringer and the role of Klebsiella bacteria in AS.
It has become cliched but my particular success is underpinned by gluten free - and as per the link I suggested to Lynn - I strongly recommend that anyone with an autoimmune disease looks at the youtube presentation.
Without sounding as entrenched in my views as Lynn - it is great that you are getting success at the moment - but if you do relapse then I am sure that you will know to roll back to the start point that has provided you this start.
Btw - I thrived on Rye bread and oatcakes for many years but now cut these - as I began reacting to these too!
i might try your broth approach....
Best wishes
Sddsxxs TreatMeGently
Posted
So far doing really good. Here's a list of things I introduced back in.
All starch, fried food, dairy, fruits and sugars. Pretty much everything back to normal.
So far no side effects yet.
I guess I ran into this by mistake but I read an article yesterday about the effects of rheumatoid arthritis and collagen type 2 and explains why chicken feet broth makes me feel so dam good. Turns out it's prescribed by some doctors to their patients for AS relief. There was a study done in the early 2000s about a group of 60 patients. Half were given type two collage And the other half were given placebo.
Of the half given placebo nothing changed. But more than 40% of patients given type two collagen had relief from AS. 14% of those patients went I to full remission. The study was carried for 3 months. Don't take my word for it and look up rheumatoid arthritis and type two collagen.
I'm no doctor but I think I'm beginning to understand.
In order to repair anything broken you have to be able to do three things.
1 find the problem
2 stop the bleeding
3 start repairing
This is why I think chicken broth covers all of that.
Collagen and glucosamine in chicken broth specially chicken feet not only relieves Pain from rheumatoid arthritis but also will begin to repair your cartilage and joints.
It will also begin to seal your gut from lbs after few year of taking so much NSAIDs.
This is why I'm getting better so fast.
So I pretty much dropped my diet and I'm back to regular food except
Sugar in moderation no soda and no alcohol.
I will continue to update this page as I go but so far so good
My mobility is coming back everyday and my joints feel like they have been lubricated.
TreatMeGently Sddsxxs
Posted
What ingredients (what bones) and where do you source your ingredients for your broths (especially the chicken feet) ?
As I said before I am drug free with my own regime - but your leaky gut treatment is of interest to me also.
It is worth considering though that intestinal permeability can occur as a natural reaction to stress or infection (it has also been proven that intestinal permeability occurs to gliadin / gluten proteins in wheat). It isn't just about the leakage it is about the way our immune system deals with the leakage - and selects proteins as self or non-self (this is all about mineral, vitamins, hormone status and the success of our Thymes training and selecting antibodies).
Also the addition glucosamine in your diet is binding to food lectins that you have reintroduced and making them less reactive rather than binding to your joints and other tissues. Food lectins bind to N-Acetyl Glucosamine.
Keep this in mind if you have a relapse - as ommision of dietary lectins may be a requirment to keep you on track at so later date.
Stay in touch as yours in a very interesting story!
TreatMeGently Sddsxxs
Posted
My longer comment / question is sitting in moderation.
Quick question - can you please post your recipe and where you source your chicken feet from. What other bones do you use?
Thanks!
TreatMeGently Sddsxxs
Posted
Google this -
glucosamine-may-prevent-inflammation-caused-by-wheat-lecti-consumption
The extra glucosamine you are getting will be binding to plant lectins - which are part of the cause of immune system repsonse for some autoimmune diseases.
Emis_Moderator Sddsxxs
Posted
If users wish to discuss this type of subject then please use the Alternative Medicine group, see links below. Please do not respond that you want this discussion in the specific condition group to advise users of different therapies or theories for the condition. I have been allowing this but users start "campaigning" and posting in all discussions that leaky gut, candida etc are to blame for all diseases and these are overtaking the discussions and also putting users off posting. While this may be some users' belief the majority of users do not want to be told this over and over again hence the Alt Meds group. If any user replies with an interest in reading about the subject in the condition group you can add a link guiding the user to the discussion in the Alt Med group. See second link below.
http://patient.uservoice.com/knowledgebase/articles/398318-alternative-medicines-opinions-etc
http://patient.uservoice.com/knowledgebase/articles/398316-adding-links-to-posts
Regards,
Alan
Sddsxxs Emis_Moderator
Posted
serena87418 Sddsxxs
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camil79880 serena87418
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faiz24 Sddsxxs
Posted
Can you share your recipes with me? I have been suffering from AS for the last two years. I find a hard time sleeping at night which makes me groggy and forgetful during the day.
devongold Sddsxxs
Posted
I have been able to manage the symptoms of IBS and flares of severe joint pain by cutting out gluten, dairy products, yeast, refined carbohydrates and sugar from my diet. I can go for quite a while feeling OK but if I stray off the diet, it doesn't take long for all the symptoms to come back.
I had a major flare a couple of years ago and managed to stop it in its tracks by fasting for several days. However, the re-introduction of foods needed to be carefully monitored as some of the reactions were severe. The GAPs diet is a good way to start eating again and I found that I recovered quite well by keeping to broths, vegetables and fish for several months. I excluded fruit because it made my gut problems worse. I also take vitamins/minerals (hypoallergenic), fish oils and EPO and turmeric if I have a flare. The flares are nearly always because I've fallen off the diet, thinking I can get away with it but others may find they can tolerate more foods and take more chances without becoming ill again.
Thanks for sharing the information with us. I hope people who are newly diagnosed with autho-immune disease take a look at the gut bacteria/permeability research and at least try a low carbohydrate diet before starting the drugs. What do they have to lose?
Take care.
TreatMeGently devongold
Posted
i didn't spot your post earlier - great to hear another success story... Just wondering what vitamins and minerals you take?
As well as my diet - I regularly take the following -
> magnesium / calcium - ratio 2:1
> zinc citrate
> manganese citrate
> selenium
but I have noticed that if I do get any sort of flare up that it is better for me to cut down the minerals - I think if I am flaring due to food related issue that the minerals are too much for a damaged gut to take.
I also never take NSAID - even for a migraine - since doing this any flares now last a week instead of a month to 3 months!
We all need to work to get the message out that diet changes can work and refuse to be just random self healing successes.
I might eat more proper sauerkraut and might extend what I do to include some aspects of the Seignalet diet to heal my gut further.
ultimately though...and unfortunately I have a thought that if our guts are missing some vital micro-organism that could have been killed by passed use of antibiotics then perhaps no food will put it back.
There was a great quote about the gut being a zoo - if you don't have any hippos in your zoo then you don't get them by adding giraffes (probiotics) - and you don't make them reappear by putting down hippo food (pre-biotics). Perhaps the future is that dubious treatment of FMT from a healthy individual.
take care - and keep fighting!
devongold TreatMeGently
Posted
I don't think I can say any brand names on here but I take a good yeast free multi vitamin/mineral complex each day plus vitamin C (low acidity magnesium ascorbate with bilberry) and magnesium EAP. Also fish oils 1000mg, EPO 500mg and extra Vitamin E. My Vitamin D level is low but I try to get out in the sun as much as possible. I don't take calcium as my levels have recently been tested and are OK even without dairy products, but I believe it's a good idea to take Vitamin K with calcium. I had a problem with the copper/zinc ratio many years ago and this can interfere with SODase activity so I needed to alternate copper and zinc each day for several weeks to get it back into balance. I believe manganese is implicated in SODase activity too so this mineral also needs to be balanced well.
If I have a bad flare, I take oregano complex twice a day for a few days and cut right back on my diet, either fasting on water or eating only broths and juiced raw vegetables for a few days. Then I try my hardest to keep to a low carbohydrate diet. I've also been known to take probiotics but with mixed results depending on the brand.
There is a lot of new research coming along about the way that bacteria can act on the gut lining, particularly Dr Mark Pimental's recent work. It would be helpful if rheumatologists, gastroenterologists and immunologists could all work together instead of just concentrating on their own specialities!
As far as fecal microbiota transplants go, the only problem will be finding a truly healthy individual - imagine ending up with someone else's delayed illness!
I can appreciate why patients take the drugs offered to them when they are first diagnosed rather than go down the dietary route. The average rheumatologist is forced to follow a medical training that does not include treatment through diet and it would be difficult for a patient to go out on a limb without the security of a specialist's help. It's a shame that they are offered either the drug route or no support at all. Sadly, pioneering doctors have to leave mainstream medicine and go into private practice if they want to practice in a different way and that excludes a lot of patients from receiving the benefit of their knowledge.
Your advice to patients on this site is really good, based on sound science. Keep up the good work!
janniey devongold
Posted
i try something similiar ...but am not yet reliably settled into it...its called autoimmune paleo ...is it familiar to you?
devongold janniey
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I'd be really interested to know about autoimmune paleo. It's really helpful to bring all of our knowledge together.
TreatMeGently devongold
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I think you are right on the money with what you are doing.
I am interested if you have any links that explain SODase - as I had read some stuff on manganese in relation to this. I see my Manganese as a muscle relaxant - it seems with my Magnesium to loosen me up between my shoulder blades and neck.
Another thing I have been using for sign of any initial flare is a shot of pret pomegranate juice - really bitter but works like an antibiotic against the klebs! I guess like your Oregano
I am at my best at the moment when I dont have carbs for breakfast or lunch - but can usually eat a meal with rice or potatoes in the evening.
If I fast then I get worse before I get better. The gym helps me and I swim too, but do a lot of stretching and twisting to keep my lower back moving.
I have found a good (but expensive) paleo diet careal with nuts and seeds that I add extract seeds to and a few blueberries - then I stir in 2 spoonfulls of Sheeps Milk yogurt - that i get from the UK supermarket (this yogurt is similar in bacteria to the one used on the SCD diet for gut health). Certainly the closest commercially available without making yourself.
Agree with FMT - needs more research - but I think a close relative you trust might be safest here. I think western society may have depleted their microbiome though - and some of the tribes that have never had antibiotics - didnt have casearian births may be key to one day identifying what out true gut zoo should look like.
We all need to club together - perhaps on twitter where I have been sharing recently, then we might get the message out to more people!
sue2408 TreatMeGently
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Good morning TreatMeGently, I have been enlightened by all of the great information AS sufferers are posting. I was diagnosed with AS over 30 years ago. I also have RA and Sacroiliitis. I'm at the end of my tether so was pleased to fall upon all your posts!! I have order my organic Chicken feet so will hopefully have a success story of my very own to share in the near future. Is your health still on the up? I haven't been able to find any recent posts from you. Best wishes, Sue