TLDR: I tried out 20+ substances / medications for my ankylosing spondylitis (AS) and found a way to reproducibly bring my it into remission. This is huge because the standard of care more many people ends up being injections of biologics (Adalimumab etc.), which tend to cost ~€1k / month or more. I don't know whether my approach generalizes (n=1!), but I thought I'd share what I've found so far.

So I've been procrastinating writing this up for 5 years, and all those years, I've been thinking about what the right type of format for this post might be. I've settled on the bullet-point format which I've used for my posts on running a company in Germany and Germany's exit tax, because that format turned out to be popular among readers, and it seemed easier for me to write.

The quick back story here is that I've been diagnosed with ankylosing spondylitis in 2021. This is a kind of rheumatism with its main symptom being back pain.

I've spent the past five years running various self experiments. As a medical doctor, I am in a somewhat privileged position that I have some basic understanding of the science, but more importantly, I can just walk into any pharmacy in Germany and get medication without having to convince another medical doctor to write me a prescription.

So here are my learnings so far. There's some new stuff in here, I think, which isn't covered by the current peer-reviewed research. The usual caveat of a sample size of n=1 applies, and I must confess that my overall approach could have been more statistically rigorous - many of my "experiments" simply consisted of me trying out a substance for a while, assessing how my pain was, then stopping that substance again and comparing for a few days, etc.

This is five years of one-person experimentation condensed into one article. Each section could probably be its own long-form article. I've tried my best to keep things brief to give you an overview over what worked for me. I hope that my notes provide some new directions for future research - but, at the very least, some inspiration for other patients open for self-experimentation, whether they are physicians or not. Regardless, I hope to update this post continuously. Enjoy!

Treat the Gut

The #1 takeaway I'm trying to convey is that ankylosing spondylitis is, for me, a disease of the gut. My personal theory is that something related to the HLA-B27 mutation leads to increased gut permeability, contents of the gut cross over into the blood stream, and along the way something weird (tm) happens with the immune system where it starts to get "trained" to attack tissue of your own body.

So, after a lot of experimentation, my overall approach can be summarized as "throw everything at the wall which has some evidence of making the gut less permeable".

The super interesting thing here is that all these substances initially led to significant worsening of my disease. Like.. huge worsening. I could take one capsule of fish oil and predictably be in a lot of pain 6-12 hours later - every single time. This felt so unbelievable to me because it was described nowhere in the literature, but I replicated it countless of times. Same for Glutamine and high doses of Vitamine D.

Finding this out took me one year or so, but the actual bigger finding (which took me another.. 3 years?) was that if I continued to take them, the pain got gradually better and my overall rheumatism got much better. Completely counter-intuitive, and no clue how I came up with the idea.

So, here are the substances with the biggest impact for me:

Some impact:

Interestingly, one substance stood out because it triggered pain in a similar way but did not subside when taking it longer:

There are some interesting learnings here:

Those were the biggest findings for me personally. Here's the next one, it's a bit of a smaller one.

Vitamin B Weirdness for Ankylosing Spondylitis Patients

I think it's fair to say that, at the very least, AS patients have something very weird going on when it comes to their vitamin B situation. My findings:

Curcumin Weirdness

There's some limited evidence of Curcumin having anti-inflammatory properties. For me, it didn't do anything. I tried the "normal" Curcumin plus Piperin, and I also tried the liposomal curcumin. Interestingly, the liposomal curcumin gives me brain fog a few hours later, feels very similar to the Methylcobalamin B12 drops. Weird.

An interesting research question could be: What's the commonality of Methylcobalamin and liposomal curcumin in the gut? That might lead to some interesting learnings about how the gut of ankylosing spondylitis people is different.

Laxatives Are Interesting (Yes, Seriously)

I wanted to experiment with some sort of "gut restoration protocol" of a friend (maybe another finding here is that I have interesting friends), and the first step was to take some laxatives (sodium sulfate). Interestingly, my back pain went away after a few hours. So I just said "screw this gut restoration protocol" and started experimenting with sodium sulfate. I was indeed able to reproduce the pain-reducing effect multiple times.

Even more interestingly, the effective dose can be titrated down to what is essentially a non-laxative dose - for sodium sulfate, I found this dose to be approximately "just a small tea spoon full of powder", in contrast to a laxative dose which would be multiple tea spoons.

My theory for the mechanism would be that you're simply inducing a mild malabsorption of nutrients as you're essentially changing the osmotic gradient in the colon. But.. I don't really know.

There are a few downsides though which probably make this infeasible for long-term therapy: As already mentioned, you're inducing malabsorption. Secondly and more importantly, I call this "trying to light a Christmas candle with a stick of dynamite": You're literally gambling with a laxative. Get the dosage just slightly wrong, and you're running to the toilet. Or eat something just mildly dangerous, and you're running to the toilet. You get the idea. There's a "funny" story of how I slightly "mis-dosed" sodium sulfate just before I went on a day-long hike on a mountain in Thailand with the parents of my girlfriend.. good times.

Still, it's fascinating that the pain goes away.

Brain Fog vs. Pain

One interesting observation was that brain fog and pain seem to be opposites in my ankylosing spondylitis. Or, in other words, they would almost never occur together. If I had brain fog, I wouldn't be in pain at the same time, and vice versa.

Also, accordingly, the substances for inducing pain would also make the brain fog go away, notably Glutamine and fish oil (see above).

Somewhat unexpectedly, I actually prefer the state of "back pain with no brain fog" over "brain fog with no back pain", mainly because brain fog feels more annoying.

Ibuprofen vs. Celecoxib

I started experimenting with Ibuprofen vs. Celecoxib for pain management. Curiously, Ibuprofen does almost nothing for me. Then again, my dosage might not have been high enough (3x400mg/d). Celecoxib, on the other hand, does reduce pain (100mg/d).

Nightly Hand Numbness / Tingling

Here's an interesting one. In AS flares, I would always wake up at night with my hand or arm being numb (tingling) - you know, the feeling you usually have when your partner falls asleep on your arm and squeezes off the blood supply of your lower arm and hand. I thought it was totally normal that this was happening to me almost every night.

Turns out, it's not - I think. Any time I would be in some sort of AS "state" (flare of pain, or just lots of brain fog), I would have hand numbness and tingling at night. On the other hand (pun intended), if I'd be in remission, no tingling at night - never!

Now, even more interesting, what happens if I have a flare but treat it with Celecoxib, which makes the pain go away? Yes - still tingling. So the nightly tingling is a really reliable and interesting indicator of active AS.

Enter the Enema

One of the weirder experiments out there. I read a book on gut bacteria and the author was a huge fan of delivering probiotics directly "where they belong" via enemas. I shied away from this idea for quite a while until, one summer morning, I awoke with brutal back pain at 5am and found myself starting an Amazon search for "enema kits with Amazon Prime same-day delivery".

So the idea is to pop open a few probiotic supplement pills, mix them in 300ml (or so) of water, and flush this whole concoction up (down?) "there".

Multiple interesting observations:

The most interesting finding here is that the Lactobacillus probiotic instantly triggers pain.

Smeary Poop

I don't know how to put this in "politically correct" phrasing, so I'll just go for it:
You can literally quantify this by the amount of toilet paper you need in one "session". Many sheets = bad, a flare is happening or likely will follow. Few sheets (or "magic poop" with one sheet) = good, you're likely in remission.

Smeary Poop + Lactobacillus?

Here's another wild theory. Lactobacillus (orally or via enema) would trigger my AS. However! When my gut was generally "good" (clean poop), Lactobacillus would not trigger it.

So the theory would be this:
  1. The gut content of AS patients is lacking mucins (the slimy stuff which somewhat separates your poop from the walls of your colon).
  2. Gut bacteria come in touch with the colon.
  3. The colon produces antibodies against "good" gut bacteria (Lactobacillus) and kills it.
  4. The gut bacteria populations shifts to more "evil" gut bacteria.
  5. And the cycle repeats and gets worse - go back to 1.

However, from this, an interesting treatment idea emerges: Just eat gut-healthy food which helps create slimy stuff. A very easy to implement hack is this meal:

This almost always leads to magic clean poop, and remission - at least for me.

My Supplement Stack

As always - the massive disclaimer that this works for me, but I have no clue whether 1) it works for you and 2) all of this may be one huge coincidence where my AS got into remission randomly and I'm attributing causality where none exists. Maybe, maybe not.

Again, the overall theme is "throw everything at the wall which makes your gut less permeable".

Morning

Evening

Going "Full Huel"

I switched my food to liquid powdered food for quite a while (Huel Black). I wouldn't eat it exclusively due to.. crazy farting. Man, having two Huel Black meals after another, those were the craziest farts of my life. A very memorable experience for me, but not for the people around me.

Anyway, the really interesting finding was that any sort of AS pain would pretty much disappear. I think this is similar to what people on the carnivore diet describe - it's essentially just an exclusion diet (here: meat or Huel) where you've eliminated whatever "evil" substance is triggering your immune system.

24-Hour Fasts

Going on a 24-hour fast was very interesting because it would predictably, every time, make my brain fog disappear completely (if I had any). Pain would not always go away completely, but still get much better.

Also, very interestingly, if I was in a "smeary poop" state, going for a longer fast would suddenly transition the "system" to "clean, magic poop". I don't know why.

Jetlag = Flare

Even if I'm in a perfect state, i.e. remission, magic poop, etc., travelling across time zones almost always triggers a minor flare for me for the next few days. Especially while sleeping in the new "shifted" time zone, I'd often wake up with minor (sometimes major) back pain. Just have to accept that and wait for your body to get used to the new time zone.

So I guess this is another data point that jetlag causes real inflammation in your body.

How to stop a flare

Here's what I do when I have a flare, and it has consistently worked very well for either controlling the flare or making my AS go into full remission:

Biggest leverage: Try a 24-hour fast (last meal = dinner). Drink water and electrolytes to reduce symptoms like headaches. Usually this would make the flare go away.

If that's not an option:
  1. Change nutrition: Skip everything with "obvious sugar": Sweets, ice cream, etc. Switch to more protein and fat.
  2. Consider temporarily switching to Huel (Black).
  3. If I haven't been consistently taking my gut supplements above (fish oil, glutamine, etc.): Make sure I take them - maybe up from 1x / day to 2x / day.

"But maybe you have a mild case"

Valid point, but no. My hip x-ray shows New York Grade IV AS, i.e. my hips are completely fused with my spine by inflammatory tissue. Must have happened while I was younger - I remember many nights having crazy back pain, I thought this was normal because I was a medical student and sitting (studying) in front of books a lot. Turns out, it wasn't normal and my spine was fusing with my hips.

Back in 2021, my rheumatologist was ready to put me on biologics (Adalimumab). I told him "let's wait once more, I'll try to do some nutrition experiments".

He was skeptical, but he gave me a chance.

I'm glad he did.


Addendum: What didn't work

Here's a long and incomplete list of things I tried which didn't have any effect: