I've posted on this forum occasionally over the years, and always really appreciated the support and information provided here. I've recently had tremendous success with a lifestyle/treatment I've adopted which has given me what feels like complete remission from my AS symptoms. It's been like a miracle for me. I literally feel ten years younger, and I'm active and doing things in a way that I haven't been in as long as I can remember. Although I feel it will be controversial for some I thought I would still like to share my case in the event there's someone else like me out there that could be helped by it. We all know what hell the disease is.
I'll go through my exact symptoms just to give as clear a picture of what was going on with me and the various things I tried to alleviate them.
I had my first flare of SI joint pain when I was 16, which lasted a couple of weeks and caused me terrible pain at the time. The 2nd flare I ever had was at 19 years old, again lasting a few weeks and causing me to limp in pain and be prescribed anti-inflammatories from my GP. After that I think maybe one more flare up, until in 2008 when I was 23 I had my worst flare ever - I was essentially housebound and couldn't walk for almost a week at the worst point, with awful emiserating pain for 4-5 weeks total and general SI inflammation and pain for 2-3 months total. Since that episode, over the years I have progressively reacted to and become more and more sensitive to heavy exercise or later any stress on my hips / legs. More recently any impacts or serious stress / exercise with any part of my body would cause an SI flare. I also had recurring sore knees which would sometimes stop me sleeping, and I have had 2 bouts of iritis / eye inflammation also. I was quite active going to the gym, rock climbing and running before this, but had to give up all sport and exercise apart from activities done sitting down (like riding a motorcycle). Until recently even two sets of pushups or a hilly walk would cause me a horrible SI flare a few days later. Also getting an upset stomach from traveling in foreign countries caused me flares on 3-4 occasions.
I should add that my Mum, Sister, and Aunt are all diagnosed with AS and my Mum has a completely fused spine, and I am HLA-B27 negative and have had the test twice. Also I am a diagnosed Celiac (this comes from my Dad's side believe it or not), diagnosed with biopsies of my duodenum done by a gastroenterologist and a blood test. I have had multiple MRI scans and X-rays on my SI joints, but they never found any identifiable damage despite over a decade of flare ups many times a year.
In the last 5 years, I generally would have 5-10 flare ups a year, lasting from a week to 6 weeks, always in my SI joints but often with accompanying hip and knee pain also.
Here are the treatments I tried over the years:
Things I was prescribed by my Rheumatologist: Celebrex, Diclofenac and other prescription anti-inflammatories in different forms. Tramadol and Amitriptyline were tried also. Also had cortisol injections in my SI joints which didn't help.
No immunosuppressants or DMARDs or anything like that. I had to stop anti-inflammatories apart from Celebrex very quickly because I had acid reflux / esophagitis which also runs in my family.
I tried physiotherapy from 3 different physios and a course of acupuncture also.
Treatments I tried myself:
Dozens of different supplements / vitamins
Megadosing fish / krill oil
Low-dose naltrexone (from an Israeli pharmacy)
Large amounts of probiotics
Resistant starch supplements for feeding good bacteria
Diets I tried:
Low starch (mostly no starch) for 6 months
Vegan (3 months)
Raw Vegan (3-4 weeks)
A super bacteria rich diet, with homemade sauerkraut and kefir every day, along with raw miso
Also tried a 48 hours fast in the middle of a flare
Of every single thing I tried in the last 10 years, none gave me any relief at all, apart from possibly the Tumeric and occasional Celebrex which I felt might have made a tiny difference. By that I mean I feel like either or both of them would relieve my pain maybe 10-15% when I was having a flare, that's it. Aside from that no treatment I ever had or undertook ever felt like it was ever reducing my pain or inflammation or sensitivity to exercise in any way.
Zero Carb / Carnivore diet
I heard about the carnivore diet I think from the doctor that only eats meat who appeared on the Joe Rogan podcast (Shawn Baker). I also came across Mikhaila Peterson's blog about her beef-only diet treatment for her arthritis and depression. I did a bit of research and joined some facebook groups (be warned some are rather zealous / strict, don't be put off by the people though as the information can be useful).
Since October 2018 I have strictly eaten only meat, with salt for seasoning. I eat 90% beef, with a little bit of pork / chicken and lamb also. Generally I try to get the fattiest meats possible to help meet my caloric needs. I also eat beef liver once a week for the nutrients and I make large batches of beef bone broth and drink a bowl before bed every single night. I take a supplement nightly with magnesium, potassium and calcium (electrolytes seem hard to come by on the diet) and that's it. I have cheated 3-4 times over the last 5-6 months by eating normal meals with carbs when eating out with friends or at Christmas, and it hasn't given me a flare up. I tried to reintroduce raspberries (as they're okay on the fodmap diet which is the one other thing I'd never tried) by eating some every day and felt like the inflammation was returning so I stopped. I plan to slowly try and reintroduce fruits or vegetables one at a time in the future, but at the moment I am enjoying being pain free so much I don't want to risk it.
Within a few days of starting the diet I started feeling really good, and I had to hold myself back from exercising and possibly triggering a flare. After a month I tried some light exercise and it didn't give me a flare, and in the following months I slowly tried heavier and heavier physical activities, until around January 2019 where I returned to working out using heavy weights in the gym which was just unbelievable for me. In terms of my weight, I have always been thin. On the diet my weight has remained stable after initially dropping 1-2 pounds, and my bodyfat has dropped several points, I'm noticeably quite a bit leaner.
Just to give you some idea, I have gone from being unable to run anywhere, go on a long walk or do any activity that involved any impacts or jolts, to being able to do heavy squats and deadlifts in the gym (these were the first exercises I had to give up 10 years ago). I feel unbelievable and it's been totally life changing for me, I can finally use my body again. Other symptoms like knee and hip pain have been eliminated, apart from 1-2 bouts of slight hip soreness for a few hours which I think is related to my weightlifting.
I know this diet flies in the face of all conventional dietary wisdom - literally no fruits or vegetables, no fiber, almost all red meat! I won't advocate for it in detail here or try to explain why it might be okay or why it works, I fully accept it's quite possible that it's bad for your / my long term health. If you search online there are various discussions and possible explanations and data for questions you might have or as to why it might not be so bad. I just wanted to make a post here so that people know it's an option they could try if they are truly desperate like I was.
Trying the diet was a huge leap of faith and still is pending any long term effects on my health. However I have to say I am willing to accept extra risks of other health problems to be able to use my body again, I feel incredible and being pain free is something I had not imagined was possible for me. I hope you don't mind me sharing my this. I'll answer any questions if anyone has any but won't try and advocate or promote it any further.
Thanks for all the help and support over the years, I came to this place many times in great misery and desperation and it was always nice to find people willing to answer my questions.
Thanks very much,