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Joined: Sep 2016
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Se7enUK Offline OP
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Hi all, I just wanted to introduce myself and share my recent experience of being diagnosed with AS.

My name is Paul (43 years old) and I am from the UK and up until 14 months ago was very active. I regularly cycled 2-300 miles a week with many rides being 100 miles plus. I have never had to watch what I ate or drank and consumed everything from healthy to pure junk washed down with a beer or three and somehow maintained a weight of just under 13 stone which is OK for someone 6'2". blush

Then last year I started with a pain and stiffness in my thoracic area and base of my neck which was a lot worse in the morning, this slowly got worse and at first I thought it was our mattress and so tried different ones! Sixth mattress later and still no difference apart from the wife getting fed up of with me, I even tried changing cars with no improvement. Then the pain and stiffness spread around my shoulders, lower back and hips and just gradually got worse to the point that I could no longer run, I struggled to get out of my car and my neck seemed permanently cricked! All the while visiting my Doctor and getting various prescriptions to try but to no avail apart from the Naproxen which did help a little, however my stomach was not agreeing! I had an MRI last January that did not show any visible issues apart from some worn facet joints in my neck and again told to look at physiotherapy.

Then in August the pain had just gotten so bad and the lack of sleep I was having from the pain waking me up, I pushed my Doctor to see a specialist rhumatologist as I had read about AS(although I had already tested negative for the HLA B27 gene)! This time I had a full spinal MRI and following the results the rhumatologist confirmed AS (3rd Sept 16)). [*bleep*]! He gave me a steroid injection which by the following day had eased all my symptoms and now I was prescribed Meloxicam to take which again I wasn't happy with!!! cry

So again took to the internet and started reading as much info as I could to see what else I could do and happen to drop across the video Fat Sick and Nearly Dead which triggered something in respect to diet (worth a watch if you haven't seen it). This lead me to reading up and coming across Dr Alan Ebringer's research and decided to see what I could do.

So now I am 4 days into a juice only diet with a goal of achieving 10 days or more to allow some detox and healing to take place, with a view then to switching to a NSD (or near as dam it) diet and getting back out on the bike for exercise (something that AS has caused me to drop). I also dropped the meds at the start of my fast and the stiffness is returning, but did not want to take Meloxicam on an empty stomach.

So the journey begins and I need to find what works and would appreciate others experiences if they have done the above.

I also read some good stuff about Apple Cider Vinegar (ACD) which if taken 2-3 times a day can reduce symptoms. Anyone else tried this?

Cheers for reading, regards
Paul


HLA B27 Negative - Current Supplements:- Vitamin D3 / Magnesium 150mg / Oregano 25mg / Vitamin C / Probiotic (5b CFU) or Kimchi
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Se7enUK Offline OP
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Pretty quiet on here then!


HLA B27 Negative - Current Supplements:- Vitamin D3 / Magnesium 150mg / Oregano 25mg / Vitamin C / Probiotic (5b CFU) or Kimchi
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always quiet-ish on weekends. Come Monday there will be plenty of responses.

Dragonslayer knows Ebringer and is expert on his work so I am sure you and he will have a lot to chat about.....Unless you are a dragon of course..>!!

He too, is a diet expert and has enjoyed much success by its use.

Regret, that like most of us here, that you are lumbered with this grim disease.

Where in UK?

Good luck

Last edited by ineptwill; 09/24/16 07:32 AM.
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Hi Paul, and Welcome to KA!

Glad you found this site, and as you are interested in diet as a treatment approach then you have found the right place. I haven't any personal experience with it but we have a forum dedicated to this and I'm sure you'll find lots of support. Look for the NSD and diet related link, if you haven't spotted it already.

We also have a Sporting forum with a thread for exercise enthusiasts! smile


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Se7enUK Offline OP
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Thanks Mig

Will I am from the East Coast just north of Lincoln and thanks.


HLA B27 Negative - Current Supplements:- Vitamin D3 / Magnesium 150mg / Oregano 25mg / Vitamin C / Probiotic (5b CFU) or Kimchi
Joined: Sep 2016
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Hi Paul! I'm newly diagnosed as well. 52 but have bounced from doctor to doctor with various inflammation and pain. Neck back knees ankle hips and itisitis. When my dr diagnosed me I had never heard of it. The NSAID are not a long term option for me due to a previous bleed and tramadol and other narcotics hard on liver. I've been on an anti inflammatory diet for over a year and it helps but didn't kick it. I'm still struggling to figure it out. New beds new shoes ... lots of different shoes trying to find a pair that didn't "cause" the problem my husband swore I just loved shoes! Few got worn... we too got a new car as I had trouble getting in and out of a Saturn and driving a stick shift.

I have found this group to be very supportive and helpful. No one in my world has ever heard of this so I felt very alone. My husband has even been reading and he has become much more supportive.

I cant offer much in what will work for you but I can tell u you have come to the right place
And I know you will find help kicking this. I'm encouraged just by being among others who are also struggling with this disease and yet finding ways to deal with it.

Welcome to the group and may you soon find relief!

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Se7enUK Offline OP
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Cheers Nina, I found this link which to me seems to make a lot of sense and is something I am going to try with diet.

http://treating-ankylosing-spondylitis-natur.blogspot.co.uk/

Frustrating as hell!!


HLA B27 Negative - Current Supplements:- Vitamin D3 / Magnesium 150mg / Oregano 25mg / Vitamin C / Probiotic (5b CFU) or Kimchi
Joined: Sep 2016
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Paul,

Thanks for the additional resource! And indeed it is frustrating !!

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Nottingham here

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Fifth_Degree_AS_Kicker
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Hi there,

I can give some quick help.
I have had this disease for 12 years.
It took me 10 to find a doctor.
There are 3 major things you can do. Really 2 till you can find a doctor
Diet and exercise, both make a big deal. And the other thing is finding a doctor then you can go through treatment. But I looked for the better part of 10 years and am fortunate enough to have found one at the end.

Oh I forgot to say some are SA and some are AS. Those of us with the AS type have it much more grim

Good luck and never settle for a bad doctor.

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