Helminthic Therapy for Sjogren’s Syndrome – 10.5 month update

I was thinking to wait for the full year, but I’ve had some requests for an update on my helminthic therapy results. A reminder of previous events:

  • February 2015 – decided to order NA (necator americanus, aka hookworms)
  • March 2015 – first dose of NA
  • June 2015 – second dose of NA
  • August 2015 – first dose of HDC (rate tapeworm – addressed in September blog post below)
  • September 2015 – third dose of NA, second dose of HDC
  • October 2015 – dental surgery with 2 weeks of antibiotics, another dose of HDC
  • November 2015 – fourth dose of NA

I’ve now had time for the fourth dose to set in and the effects of the antibiotics to wear off (typically 4-8 weeks if they don’t kill the NA outright). What have been my results?

First, as always, Sjogren’s Syndrome symptoms are highly variable. My symptoms tend, like many SS patients, to flare up for several days and then relax again. This makes it somewhat difficult to tell exactly how much any given treatment is helping. As a result, my appraisal will be based on the following: symptom/flare frequency between now and one year ago, and results of the period when I was on antibiotics. Antibiotics, particularly amoxicillin, are known to render NA ineffective or to even kill the colony outright. As a result, I cannot know for sure whether I have over 100 hookworms from the 2015 treatments or merely the 35 I took in November.

What I noticed after taking amoxicillin for two weeks (around the beginning of November):

  • My seasonal allergies returned. I hadn’t fully realized how small of a problem they had become until they came back.
  • Eye dryness became worse. I had to start using eye drops for a period of time (normally Restasis is enough).
  • Some small neurological issues from 2014 returned. In particular, muscle twitching and burning lips that I hadn’t really experienced for most of 2015.
  • My sleep tracking showed less sleep and more disruptions. I also found myself waking up to worse dry mouth.
  • My ability to remember names was much worse. I felt like things were constantly on the tip of my tongue.
  • Joint and muscle pain frequency increased.
  • I ended the antibiotics in a notable flare.

December and early January ended up being better, but I hit another flare earlier this week. I believe this was at least partially attributable to a virus I picked up and some poor sleep. I have some increased stress right now, so that could also be a factor.

Based on the period after the antibiotic, I feel confident stating that the NA have been a moderate help. They seem to have moderated some of my symptoms, and I believe that my frequency of flares has decreased overall since 2014. I started Plaquenil in the summer of 2014 and a gluten and dairy free diet before that, so I tend to think that improvements in 2015 were largely due to the NA, though Plaquenil could have also played a role. Unfortunately, I suspect that at least some of my colony perished due to antibiotics, so I may not be seeing as much of an improvement as I should.

Unfortunately, the same cannot be said for HDC. I have taken 3 doses of HDC, first 10, then 30, then 20. The initial dose of 10 had little effect that I could see. The next dose of 30 was followed by a nasty flare. The dose of 20 was also followed by a flare, though it immediately followed my antibiotic treatment, so I cannot be sure as to causation.

What’s next for me?

I will likely order at least one more dose of NA, as I believe that I’m not running the full colony that I should be due to antibiotics. Hopefully I will continue to see a reduction of symptoms. If nothing else, I am confident that the NA has helped my allergies and my sleep, which is enough reason for me to keep them.

I will likely try HDC again. While I never noticed any benefits, I can’t be sure that the flares were actually caused by the HDC. I would not order a dose stronger than 20 organisms.

I have heard good things about TSO (pig whipworm), which is the most well-studied of helminthic therapies. Unfortunately, Ovamed, the German provider, has gone bankrupt, leaving a single Asian provider with rather high prices. That being said, I may pool my pennies and order a few doses to see what value I get, particularly if the HDC continues to underwhelm.

I believe that helminthic therapy has helped reduce my symptoms, but it has not been a cure. While I will continue to explore the HT options available, I am also closely monitoring other SS treatments, and will be ready to jump when another is available.

Posted in Personal, Treatment Tagged with:
WordPress Appliance - Powered by TurnKey Linux