I'm new to this forum, and in fact have never posted on any forum so if I am doing it wrong or putting this in the wrong place please forgive me.
I am a 36 year old male, 6'1" and 165lbs, diagnosed with AS 8 years ago. I am putting notes below so that anyone else that may have had similar experiences or a trajectory can compare.
2008-2011- In the later half of my 20's I developed more and more stomach issues, bloating, nausea after eating, and fungal skin infections that worsened as I approached the age of 28. I was drinking alcohol in social situations frequently and had a carb/protein heavy diet.
Jan 2012- For the first time in my life I developed lower back pain that presented upon waking and credit to my family doctor he immediately honed in on AS, confirming with HLA-b27+, bone scan, immediately followed by iritis flare, high CRP, then various joint issues in my hips, feet, ankles that made walking difficult for the next year. 1 month of prednisone followed by 18 months of methotrexate brought the inflammation under control, to where NSAIDS every night before bed allowed me to get 7 hours sleep. I searched for alternative treatments and supplements. Met with naturopaths, homeopaths, acupuncturists, diet etc but the only thing that was ultimately effective at this time in lowering inflammation was prescription drugs. CRP was at 15 then dropped over 1.5 years to 1.0. I think at the time the inflammation was a fire that needed to be put out, and lifestyle changes were not potent enough to deal with the immediate emergency.
I continued on like this for a few years, eating fairly healthy foods but generally a typical North American diet. I rarely did any stretching exercises. Occasionally I would go to the gym but would become nauseous quickly from mucus/sinuses and would quit early. I would catch colds frequently which would exacerbate any symptoms while fighting them.
Fall of 2016- Cut dairy and all carbs except non-starchy vegetables. Switched from cereal and milk for breakfast to scrambled eggs. The first week I would wake up in the middle of the night covered in sweat, but after a few days I discovered a feeling of wellbeing that I hadn't had even as a child. Zero brain fog, clear sinuses, more energy in the gym, even blood sugar, reduced irritability. This diet did not eliminate joint inflammation, in fact it seemed to not affect the arthritis, however all intestinal disturbances went away for the first time in a decade. I did this diet strictly for 6 months, then leaned into a casual low carb diet for the next few years which completely cured me of stomach pain which had affected me for years.
Fall of 2018- I was taking 250 mg of Celebrex every night at this point, but no other medication. I don't know if other people have the same issue, but my symptoms are much worse in the fall/winter. By September of 2018, I was having trouble getting more than 5 hours of sleep and saw my Rheumatologist who thought it was time to try an Anti-TNF, recommending Humira. As I'm sure all of us on here know, this disease can be terrifying, a feeling of claustrophobia being trapped in your own body while your range of motion shrinks. Inflammation at this point was bad, but there was no evidence of fusion in my spine, and x-rays were "mostly" normal. While I was waiting for approval and running tests, I decided to keep trying every natural approach that I could to improve symptoms. I read about the apple fast on Kickas.org, and did some research on the health benefits of fasting to the immune system. I did a 4 day water only fast and was amazed that after day 3 all inflammation went to zero. This is the first time that had happened since I was diagnosed and it was empowering to have a tool to control the symptoms. Once I resumed eating however all pain returned with the same intensity as before. I did notice that the fast improved other aspects of my health, but again the arthritis did not seem to respond. By Jan of 2019 I took my first dose of Humira. Within 3 days all inflammation was eliminated, however the side effects were the worst I've ever experienced in a drug. I had a migraine for 2 weeks, irritability, brain fog, itchy skin/armpits. My liver ALT spiked for the first time (no other drug had affected it) I had read about the scarier side effects of anti-TNFs and was fearful that the drop in other aspects of my health would lead to more problems down the road. I decided to discontinue after just the one shot. I took advantage of the remission though and started going to crossfit classes 3x a week, and remained in remission for months, even after the side effects had subsided. I asked my rheumatologist if I could reduce my dosage to half, given that in my case both the side effects and the effectiveness was so high, but she refused. I was pissed but used that as motivation to keep up the intensive workouts and diets and maintain remission as long as possible without relying on drugs.
In 2019 I dedicated myself to working towards finding a stable long term treatment that also lowers cancer/infection/secondary autoimmune condition risk. I understand that the disease may be too complex for us to fully understand, but I will settle for a hack that works to accomplish these goals. Everything is on the table, and thank you all so much for this forum because I have learned so much.
Summer 2019- By now remission from January Humira shot had worn off. Tried strict carnivore diet for 1 month. Felt worse generally, slight improvement in arthritis but not substantial over Paleo/Keto/low carb. Unless I am intolerant of meat, it seems unlikely that it is a food allergy causing arthritis in my case. Reintroducing alcohol or carbs (starches or sugars) of any kind did increase symptoms, but that seems to be more in relation to whether I'm in ketosis or not, rather than any one specific food.
Used continuous blood glucose monitor for 6 weeks at different times in the year. Did not find a strong correlation between blood sugar spikes and flare ups.
September 2019- Started consuming serropeptase (to break biofilm) and raw garlic (to combat all pathogens), 1-3 cloves daily. Within first week morning stiffness was eliminated, however effectiveness has worn off with time. Still taking it today for general health. Maintained low carb diet, drinking bone broth x2 per week. Hot yoga and fitness classes x4 per week. Oil of oregano seems to also suppress inflammation to some degree.
October 2019- Tried fasting mimicking diet for 4 days (30% daily calories). Day one was coconut oil and bone broth, Day 2 was x5 Granny Smith apples. After eating the apples immediately my upper spine stiffened up and I went into a flare up that I am still dealing with. The remaining days I consumed mostly oils, butter and it calmed inflammation. I wonder if the combination of eating the starchy apples with no other food selectively bred a bad microbe? It is also possible that the flare was caused by a die off?
November 2019- Ran extensive blood work. No vitamin deficiencies found, though Zinc is low with respect to Copper (indication of chronic inflammation). CRP at 1.0 but I wake frequently with pain in the night. Cholesterol is high but triglycerides low and good HDL to LDL ratio.
November 2019- Sent stool sample at a time of heightened inflammation to Thryve to test gut biome with PCR (DNA testing). I have since sent off a sample to Viome (waiting on results) to compare, and will test again when I reach a low point in inflammation. I would like to compare my gut biome when my arthritis is inflamed, and when it is in relative remission to examine the differences.
So far from my first results I have noticed the following:
- Type of bacteria that show up in results seems to indicate a high colon ph. Candida and putrefying bacteria seem to do well in that environment. Lacto bacteria prefer lower ph.
- I was taking insane amounts of every probiotic leading up to the stool sample. Not one of those strains appeared on the results.
- Klebsiella did not show up in sample at all
- Relative to the general population I have high levels of a few suspect bacteria, including Bacteroides fragilis and Bacteroides vulgatus.
- Here are some results if anyone wants to compare: https://www.dropbox.com/sh/vr9di0k8s4h4z3c/AACy8qryY3nkVF7rdz86K2tZa?dl=0
If anyone else gets this test done, please share so that we can compare any possible common denominators. Of course there are limitations, for example one person's strain of a species of bacteria can be pathogenic, while another strain of the same species can be beneficial. Also some bacteria can be beneficial or pathogenic depending on the substrates that it feeds on, stresses in the environment, or of course location in the body. The Viome supposedly tests the mycobiome (fungal biome) as well as viruses in the gut so we will see if that has more useful information. I also plan to run a DNA test on my oral biome.
I think this disease is one of two things: either a malfunction of our immune systems which is genetic and permanent (seems to be the consensus from rheumatologists), in which case the appropriate treatment is immunosuppression, OR it is caused by a microbial infection that while difficult to treat (like Tuberculosis, Hep C, etc) can be eradicated. In that case immunosuppression would be a good short term treatment, but less than ideal long term strategy.
Accepting that it could be a genetic defect is a tough pill to swallow, especially for those of us who have kids. I am aware of this bias. That said, everything I've noticed with my body, every instinct is telling me that it can be cured and that it is related to a microbial infection or imbalance, or weakness in general health. The disease seems to be triggered randomly, and remission seems random too. There has to be a cause and effect.
I also believe that what we call AS could be the name for a group of symptoms that could manifest from a number of different microbial triggers, or perhaps even a combination. In other words perhaps Klebsiella causes AS in some individuals, Candida in others, and Clostridia in another. In other words, a rash can look the same but be caused by any number of pathogens. Maybe AS is the same.
Thanks to all of you for sharing so much information, let's continue to exchange ideas and find a solution, for us and the next generation.