For someone who for years has put a lot of effort in learning to take care of my health and doing consistent efforts to apply best practices the following list of symptoms that were getting progressively worse was quite a shock. I started being aware of these when around October 2016 I started having my left knee start hurting when I would walk or go up the stairs. A month later, the pain spread to my back and it was almost impossible to sit for prolonged periods of time, something which was never a problem for me before. Finally, another month passed and it progressed to the point that my right hand was now twitching and cracking when I would use it on my phone or computer mouse. At this point all my joints were constantly cracking every step I would take. I remember around the end of December 2016 at Christmas time I was laying in bed in pain and wondering if I would even be able to walk by the end of the next year.
During this time I kept reading about what I might have but could not find anything conclusive. Of course arthritis seemed the most obvious option for joint related problems but I tried blood tests that could show the antibodies for it and nothing. Also, besides that my joints were cracking and in pain, my symptoms did not completely match what I was reading were the overall symptoms of rheumatoid arthritis.
I tried fixing my posture at work and visiting chiropractors but they did not see anything that stood out and nothing was reversing the symptoms. The only time my condition significantly improved was when I did a 5 day water fast, day by day things were improving for myself and by the end of the fast I could walk pain free for a few days up to a week or more. Finally around January I went to see an anti immune specialist in Bangkok who after looking at my X-rays and the “scars” that he could see on my spine was convinced I had AS (ankylosing spondylarthritis). After looking at the typical symptoms on Google this seemed accurate to me, I never heard of this form of arthritis but the symptoms were a very good match. What I found surprising though is despite all the pain I was feeling and how quickly I felt I was losing the ability to walk or sit, the doctor said I was at stage 1 out of 4 of the disease! Apparently it can get much worse, by stage 4 your spine fuses like a lump of wood and loses all elasticity, you become a hunchback like the one in the movie 300.
Nevertheless, I was more happy after the diagnosis then before, since it looked like I finally found a name for what was happening to me. The doctor seemed very good and the symptoms were a very good match for me, unlike everything else I was diagnosed or could find on internet.
However, as I suspected while waiting for the final diagnosis, if I did indeed have AS there is probably no easy cure since immune system disorders seem to still be very hard for conventional western medicine to understand and fix permanently. He went into a lot of detail of the different options in pills I had and they are basically either 1) to change the immune system so it can’t attack my body or 2) painkillers to not feel the constant pain. Option 1 carries a lot of side effects, as they are quite broad and option 2 I guess is a last resort option but won’t fix the problem. I asked him how I could be in so much pain at stage 1 and not even sure if I will be able to walk by the end of the year how will I make it to stage 4 over 5-10 years? He told me this condition comes in waves, it’s probably hitting me at the hardest right now but it might relax every now and then. He said life factors can affect it… Well, knowing that I was at “level 1” of AS and not even sure if I would be able to keep walking by the end of the year, I started reading as much as I could and create a list of things I could test that might help me out.
The following are a few temporary and finally the closest I’ve found to a “permanent” fix to my situation so far. (even 1 year later it still seems under control thanks to the last solution).
Temporary fixes that worked for me February 2017 – June 2017 : No starch diet
Quickly I saw online people had a lot of benefits with “no starch diets”. Since I remembered I felt my best during the 5 day water fast I did before, I quickly thought maybe it wasn’t due to the potential “healing power” of the body during the fast that I was feeling better but because I had 0 carbs (and hence, 0 starch which is a sub category of carbs). I quickly tested this not eating starch for a few days and I could see my joints getting better again.
The theory about why this works is for many people with AS the symptoms are caused by an overgrowth of a bacteria called klebsiella in the gut. The immune system is constantly feeling like the body is under attack due to this and for whatever reason eventually starts attacking the spine/joints. Klebsiella primarly feeds on starch, so by keeping starch low its being starved and things go normal again. The attack dies down, and I can feel my joints slowly get better day after day.
Ok great, I can finally at least heal my body sometimes. However, its quite hard to constantly avoid starch (mainly present in white rice and potatoes that I like to eat, I’ve been avoiding wheat for years). One way to do so would be to do the ketogenic diet, and then get also some mental boost benefits but I personally don’t enjoy that much being in keto too long and I think its best I cycle out of it every week with a big carb meal.
So for about 5 months, February 2017 to June 2017, I was not eating starch 5 to 6 days a week, and usually allowing one day where I could basically eat a lot of carbs. Reading online, many people could see reduction of AS symptoms with Apple cider vinegar so I would also drink some on my days of carb/starch loading. It seems to work, but hard to know how much the ACV stopped the potential AS outbreaks, I think in my case I need to do a few days of eating starch before symptoms would come back. Over these 5 months while I had to restrict myself a bit on diet I never really felt the symptoms come back. At this point I was thinking ok at least I found a solution but it seems odd to me form an evolution standpoint that I need to be so careful on diet, also without the internet it would have been very hard to find a solution like this, how would this be possible for my ancestors?
Permanent solution, fixing my gut health:
I was wondering if I would need to constantly starve klebsiella the rest of my life. Since the gut is an ecosystem maybe there is a way to feed other bacteria that won’t cause me issues so that when I eat starch the klebsiella population will be kept in check ? Eventually this lead me to the fixyourgut website and specifically this article was extremely helpful : https://fixyourgut.com/klebsiella-cause-rheumatoid-arthritis-alkalizing-spondylitis-part-3/.
John separates the supplement stack he recommends to AS sufferers depending on what is your immune system’s reaction to klebsiella. Either TH1 dominant or TH2. To determine which one I had, I did a bit of reading and TH2 usually linked to asthma and allergies which I never had, so I concluded I was TH1 dominant that way (looking at only the TH1 dominant symptoms alone I wasn’t sure if that was my situation or not). Since I wasn’t sure I went for advice that seemed applicable more for both protocols (such as using black cumin seed oil) and Allicin-C, you can find the brands he recommends on his blog. I did a skype consultation with him to get his opinion (highly recommended) and decided to start using colostrum and the GOS supplement he recommended.
After about 2 days of using these supplements, I could notice a lower average heartbeat all day and during the night (I was using an oura ring to track this). I waited about 1-2 weeks before I ate carbs again and since then my AS symptoms have never came back, even if I eat starch daily. It’s possible that since klebsiella should have already been quite starved by the time I used the supplements (because I was not eating starch for a while) my gut microbiome was faster so I would advise others to do the same. Most likely the new bacteria from the GOS quickly took the room that was left empty from the starved klebsiella. I stopped taking these supplements after 1 month and it seemed like the change was permanent. I currently do a few weeks “on” these supplements every few months. I don’t know what was the trigger for my AS, maybe it was stress, maybe its mixed with taking too much Ritalin that could have wrecked my gut health but so far it hasn’t come back.
It’s been about 1 year since I used the “permanent” fix and it seems under control. Hopefully it never comes back but I think this solution would still work if it does. For any other AS sufferers out there I hope this helps you out, its hard to express in words how thankful I am to have found a solution that seems to have fixed everything. The solutions that worked for me might not work as well for you but keep trying, modify diet as needed, figure out what could be causing harm to your gut health and you should be able to find improvements !
wow glad to hear you figured it out. Inspiring.