21 Week Helminthic Therapy Update
This is my 21 week update for taking helminthic therapy for severe Crohn’s disease and total food intolerance.
I first inoculated 8NAs on July 21st 2023. I had my second inoculation of 8NAs on October 13th 2023.
I do apologize for missing my 18 week video and blog update. Life has been a bit crazy lately, but I am still committed to continuing these updates! And sharing my (hopeful) progress with you.
This week we will discuss,
- Medications I am taking
- The past 6 weeks
- How I am feeling now
Medications
I always like to start by talking about meds I am taking. I have been taking 15mg of the immunosuppressant, steroid Prednisolone for way too long now. I have tried previously 3 times to taper off the drug. But the withdrawal symptoms were so severe, that each time I had to go back up to the full dose.
This process was extremely disheartening, and concerning. It has been both physically and mentally hard.
Recently I have had some major lifestyle changes. One month ago today I quit my job, and am now sailing around Australia with my partner.
So I decided that now that I am unemployed, I will taper off prednisolone without having to deal with working full time as well.
A friend with IBD recommended to me that I try tapering off pred much more slowly this time. Before I was going from 15mg to 12.5 mg to 10 mg.
This time I am trying to taper as slowly as I can. So far I have gone from 15mg to 12.5 mg, then 11.5 mg, 10 mg, 9.25 mg, 8 mg. As I am breaking up the pills (not recommended) I am doing my best to keep consistent doses. I am taking the largest pieces of broken tablets first then taking the smallest near the end. I think this is further helping my tapering.
So far I have made it down to 8 mg – the furthest I have been able to make it! And my IBD symptoms/ prednisolone withdrawal symptoms have been manageable.
I am definitely not feeling as good as I was when I was on the full dose of 15 mg. But I am not uncontrollably vomiting like previous times I tried to taper.
I have vomited a few times. And I often feel a bit unwell in the mornings when I have my bowel movements. But throughout the day I feel okay and I have been able to eat most days.
The Past Six Weeks
The past 6 weeks overall since my last update have been ‘okay’. Not good, but definitely not bad.
I feel slightly better than before, but it is hard to know if its the worms, or just natural fluxtuations in my disease. I am so curious and impatient to see if this therapy is going to help me.
4 weeks ago my partner and I quit our jobs to take a year off. And this has given me more time to better focus on my health.
I used to work 12 hour shifts outside in the Australian tropical sun. I loved my job as a first mate on a 24m sailing catamaran (that is 100% purple!) but it was hard on my body physically.
Now that I am not working full time I am able to focus on taking it a bit easier. My days are less stressful and rushed. And I can spend more time focussing on making healthy meals, eating more quantity of food, walking, yoga, sleep, and meditation.
How I Am Feeling Now at Week 21
Overall I feel okay. When I do have a bowel movement, about 50% of the time I feel sick for about 20 minutes afterwards. But most of the day I am feeling really good. And I am feeling so much better than I was 6 months ago.
I am still using marijuana to help me manage my IBD symptoms. And I recently just got medical marijuana here in Australia!
I still feel like it is too early to say for sure if helminthic therapy is helping me yet. I feel like I need to get fully off of prednisolone to see how my body fares without the immunosuppressent.
Saying that, I am beginning to feel cautiously optimistic.
Around week 18 I may have even had my first sign that the therapy is helping me.
I accidentally ate something that I should not have at a dinner party. I had to leave the party and had 2 urgent, painful bowel movements, and then threw up.
Now an incident like this in the past probably would have made me sick for days. Or weeks even.
But the next day I felt completely fine. I even had only two formed bowel movements. Could this have been the first sign of the worms modulating my immune system?
Another thing I feel quite positive about is that I have gained 1.5 kgs (3lbs)! As a Crohn’s sufferer I have been chronically underweight for years.
Now, my weight does fluctuate. But I usually struggle to get over 52kgs, and now I am 53.5kgs! Again, I don’t know if that is related to the worms, but I think it’s a great indication of my overall health at the moment.
And I am still able to eat as much as I want most days. Occasionally my appetite does seem to be affected (food aversion, blah feeling). But generally I am eating better than I have in 3 years…. And that is really exciting news.
Who doesn’t want to be able to enjoy eating, it is one of life’s greatest pleasures! And something I have largely missed out on over the past 3 years.
I am still feeling optimistic about this therapy helping me. I have read a lot of the scientific papers written about helminthic therapy and IBD. And they are very convincing, I actually find them comforting when I begin to feel concerned or impatient about failing the therapy.
I have also noticed that I have not been thinking about IBD as much. This could be because of the drastic lifestyle change I have had recently.
Or it could be because I am beginning to feel better, so I am not overwhelmed with health anxieties like before.