Introducing NA and TSO in hope of treating Reiter's syndrome

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This page is a compilation of several Facebook posts by the same person, who began a course of helminthic therapy for Reiter’s syndrome/Reactive arthritis but who, sadly, passed away before being able to assess the therapy's long-term impact on her disease.

I'm having a painful inflammatory joint flare and I'm trying to troubleshoot. My condition: a spondyloarthritis called "Reiter's Syndrome" very similar to ankylosing spondylitis, often triggered by severe food intolerances. There are probably only 12-20 things I can eat without triggering a flare. (FB, 2017 Mar)

My autoimmune condition (Reiter's syndrome, which, like Ankylosing Spondylitis, is an HLA-B27+ disorder that causes joint and eye inflammation) is definitely gut-mediated: if I eat starches, or any of a HUGE range of no-no foods, my joint pain will increase and/or my eyes will become painful, swollen, bloodshot, and light-sensitive. (FB, 2017 May)

I'm trying TSO for Reiter's Syndrome, an HLA-B27 positive arthritic autoimmune condition similar to Ankylosing Spondylitis. I get eye and joint inflammation in response to most foods. I have had this for twenty years; I'm 44. Took 500 two weeks ago, with very mild response (a few minutes of GI cramping the day after dosing.) Previously took 3 NA September 1st 2016 and 6 NA January 30th 2017. Also using methotrexate and adhering to hard-core dietary restrictions. (FB, 2017 Jun)

I chose TSO to supplement my 9 NA for two reasons. First, adding just 6 NA to my initial colony of 3 provoked a reaction so strong that I had to get a steroid shot, so I was looking for something gentler, with a shorter lifespan and (I hoped) fewer side effects. Second, TSO seems to really help with gut disorders, and my joint and eye flare-ups are consistently and overwhelmingly triggered by food. So even though it presents as a joint/eye disorder, it seems to be a gut disorder too. (The idea of AS as a gut disorder is supported by research from Ebringer, originator of the low or no starch diet for AS, to Asquith/Rosenbaum, currently studying the influence of the micro biome on AS.) (FB, 2017 Jul)

The full journal with NA

2017 Feb 10 - I introduced 6 NA 13 days ago. (Applied them to my leg; I still have itchy welts in the area.) Six or seven days later, I developed similar itchy welts on my arms and back. How likely is it that the new welts are worm-related? And if they are related, what the heck is going on? [1]
2017 Mar 29 - After a few years in a mobility scooter, I started taking methotrexate last April. Slow but steady improvement since then. Started 3 NA in September. Mild skin reaction at first, diarrhea ten days in, mild stomach discomfort for the week of day 50, accelerated improvement and a couple new things added to my "safe foods" list by January. I took 6 NA 1/28. Severe skin reaction (interestingly, in places both near and far from the inoculation site). Diarrhea ten days in, no real stomach trouble this time. BUT it's 60 days in and I'm having this awful joint flare that started around day 50. I'm eliminating new foods that had seemed okay, just in case they've snuck up on me, and I'm wondering if maybe the methotrexate has stopped working or needs bumping up. But I'm also wondering... could it be the NA? I know the immune response usually peaks around day 50 and then tapers off, and that's what happened to me last dose. Have others of you found it peaking later? Am I within the window during which my flare could be explained by my response to NA? [2]
2017 Mar 31 - For the past ten days, I've been having a painful inflammatory joint flare that began on about day 50 after inoculation. If you've had a similar experience, how long did it take your flare to fade? My condition: a spondyloarthritis called "Reiter's Syndrome" very similar to ankylosing spondylitis, often triggered by severe food intolerances. I started on methotrexate last April and until recently have experienced slow but steady improvement. I took my first dose of 3 NA in September. Mild skin reaction at first, diarrhea ten days in, mild stomach discomfort for the week of day 50, accelerated improvement and a couple new things added to my "safe foods" list by January. I took my second dose of 6 NA 1/28. Severe skin reaction (interestingly, in places both near and far from the inoculation site). Diarrhea ten days in, no real stomach trouble this time. BUT 60 days in, I'm having this awful joint flare that started around day 50. John and Alésia have both generously reassured me that it could be helminth-related (and not necessarily that the methotrexate has stopped working), and John pointed me to the story of a patient in the files who had a flare that started week 8, faded week 11, and was completely gone by week 14. I'd love to hear any other stories about how long your helminthic-related joint flares lasted. [3]
2017 May 21 - I started with three HW in Sept, added six in Jan. I seem to have been able to add a couple of new foods to the repertoire in the fall, but then I had a horrible joint flare in March/April that required a cortisone shot. I'm thinking about adding three more HW in the hopes of continuing to gain benefits while avoiding another big flare. I'm also thinking, because this disorder is definitely gut-mediated, about trying TSO, too. (FB, 2017 May)

The full journal with TSO (FB, 2017 Jun) :

2017 Jun 12 - I'm holding off on starting TSO until I finish a course of antibiotics. How long would you recommend waiting after I finish the antibiotics before I start taking TSO? Answer: 2 weeks (FB, 2017 Jun)
2017 Jun 14 - Started TSO last night for Reiter's Syndrome, an HLA-B27 positive arthritic autoimmune condition similar to Ankylosing Spondylitis. Took 500 last night; if all goes well will take 1000 in 2 weeks and 2500 in 4. Previously took 3 NA September 1st and 6 NA January 30th.So far, no reaction, except, for someone who never remembers her dreams, a remarkably vivid dream about cross-species collaboration. (!) (FB, 2017 Jun)
2017 Jun 15 - Day 2: a few minutes of mild GI cramping.
2017 Jun 16 - Day 3 and 4: increased appetite. My cold came back when I finished my antibiotics, so I took a few days off from my methotrexate to give my immune system some help to fight it. I could feel the inflammation brewing in multiple joints, and starting to burn in my wrists as well. This morning (day 4) I took my methotrexate shot and this evening I noticed that the inflammatory pain had gone down a little faster than expected. Could be coincidence, but it's nice.
2017 Jun 27 - I don't know if it's the methotrexate I started in April 2016 or my 9 HW (3 in Sep 2016, 6 in Jan 2017), but after five years of no dairy (and missing it horribly) I have been able to add sheep yogurt back in without stirring up more eye/joint inflammation! Oh, joy! [4]
2017 Jun 28 - Dose 2 day 2: last night I took my second dose of TSO: 1000 this time. As with last time, I had a lighter sleep than usual, but no dreams this time. ctd: much looser stool than usual.
2017 Jun 29 - Dose 2, day 3: notably more joint stiffness, though not a lot more. If this persists I think maybe I should stay at 1000 TSO next dose instead of ramping up to 2500. Will ask for advice in a separate thread. Yesterday's loose stool plus my usual constipation are averaging out to a good bathroom experience.
2017 Jun 30 - Dose 2, day 4: increased joint stiffness resolved. Stool remains soft.
2017 Jul 03 - Dose 2, day 7: back to the increased joint stiffness again days 5 and 6 (though it didn't get worse), resolved again today. Soft stool persisted through day 5, back to constipation again by day 6.
2017 Jul 12 - The diarrhoea I was experiencing at the beginning of dose 2, together with my general proclivity toward constipation, resulted in soft stool that lasted the whole two weeks of the dose. After five years of no dairy, and the successful reintroduction of sheep yogurt in June (prior to the introduction of TSO), I attempted to add in sheep cheese during TSO dose 2. I did remarkably well for five days, but then on Day 13 of dose 2, I unwisely also attempted a third trial of kangaroo meat, which I seemed not to react to the first two times I tried it. The night of Day 13 I had terrible gut pain, and the next morning I woke up with joint stiffness. Was it the cheese? The kangaroo? A contaminant in the new brand of freeze-dried strawberries I tried? My TSO dying of old age? The fault for not knowing is mine, because I got cocky and introduced too many variables at the same time.
2017 Jul 12 - Dose 3, day 1. Last night I took 2500 TSO, after taking 500 on dose 1 and 1000 on dose 2. Insomnia/light sleep again, which is what happened the nights I took the first two doses, but no gut pain. I woke up this morning with decreased pain/stiffness in the joint that flared on Dose 2, Day 14, and increased joint pain/stiffness in a different joint. I had increased joint pain/stiffness with Dose 2 that resolved completely by Day 7; will observe/record what happens this time. I had an episode of copious, malodorous diarrhoea this AM followed by about 10 minutes of gut pain. The experiment continues!
2017 Aug 8 - How soon after taking albendazole is it ok to start over with new worms? (TSO). Answer: 2 days [5]