My FAILED POIS experience: Helminthic therapy for autoimmune diseases
OK Here is a new avenue I have explored. Not successfully but interesting nevertheless I believe.
Short version of my story. Following traumatic events I developed a tenacious infection both in my lungs and in my urinary tract in 1986 at 35 years old. I took 3 different types of antibiotics during a one-month period. It completely messed up my gut microbiome. I shortly began to have digestive issues and POIS symptoms, followed months later by early symptoms of Ulcerative Colitis as well as various food sensitivities (gluten, dairy, soy...). Prior to this I had a very active sexual life without any issues.
So I am 69 years old now and I have been suffering from POIS for 35 years. But It took me years to be able to put a name on that syndrome. I saw many doctors and specialists including urologists, microbiologists, psychologists without any positive results. I also saw osteopaths, nutritionists, functional medicine doctors with a certain level of success in terms of lessening the intensity of POIS symptoms but mostly with my general health.
Since I suffer from Ulcerative Colitis, the POIS autoimmune theory made sense for me. I believed that (in my case at least) this is an autoimmune disease where my immune system is confused and attacks its own host. In my case again POIS seems to be closely related to Ulcerative colitis flare-ups after an orgasm, and UC is known as an autoimmune disease. Maybe somehow my immune system mistakenly identifies a sperm component as a foreign dangerous molecule and attacks it, creating in the process all kinds of systemic symptoms by supercharging my immune response. Same idea for autoimmune diseases in general attacking parts of the body (joints for RA, thyroid for Hashimoto, nervous system for MS , etc.). Not a true allergic reaction since allergies are similar but overactive towards a benign outside agent such as pollen or peanuts etc. Sperm is produced within the body. But terminology apart both allergies and autoimmune disorders are the result of a very confused immune system. This study "Circulating antibodies to human spermatozoa in patients with ulcerative colitis" (
https://www.fertstert.org/article/S0015-0282(05)02815-3/fulltext) added some weight to this possibility.
Trying to help myself with my issue with Ulcerative Colitis I stumbled on Helminth Therapy (yes using self-inoculation of therapeutic intestinal worms) to neutralize autoimmune issues. The basic idea is that we co-evolved with helminths in our guts and their presence trained our immune system to function properly. Our biome depletion and in particular the lack of helminths due to our modern aseptic lifestyle thwarted that process. By reintroducing helminths in the guts we try to correct the situation. I learned about this approach from my doctor in 2014 but I thought it was too weird and pushed it aside back then. I changed my mind and began swallowing helminth eggs every 2 weeks since December 2020. It has worked wonders for Ulcerative Colitis (no more symptoms or inflammation, with stool analysis to prove it). I am told that it will continue to modulate my immune system for about 2 more years before reaching a plateau that will simply require maintenance. We'll see but I am already very happy with the outcome. In general it is mentioned that Helminth therapy works for 70 to 80% of the people within 4 to 5 months. Fortunately I am part of that successful percentage.
So I thought that if POIS is also autoimmune or allergenic this therapy would help correct it as well. I was wrong unfortunately. So far good old POIS is very much like it used to be. The only difference I see is that I do not have the flu-like symptoms anymore. I'll see how it progresses over time but my hope for a POIS cure is presently rather low with this approach. But it might still work with time. So I am disappointed of course but there is always something to learn from any experience.
Since my conclusion is that POIS is not an allergy or an autoimmune disorder (which should have responded to helminth therapy) I AM NOT RECOMMENDING THIS APPROACH but if you are curious about this unorthodox avenue, William Parker wrote an excellent overview in this paper from 2013
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3868394/The Pasteur Institute also published this paper in 2017
Evolution of the hygiene hypothesis into biota alteration theory: what are the paradigms and where are the clinical applications
https://helminthictherapywiki.org/wiki/images/5/57/Evolution_of_the_hygiene_hypothesis_into_biota_alteration_theory-_what_are_the_paradigms_and_where_are_the_clinical_applications%3F.pdf
At this point I am reverting to a different theory partly discussed already and I will make a separate post about it soon. But I believe this failed attempt to address POIS is useful because it tends to disprove the autoimmune perspective.
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My symptomsMy symptoms at this time do begin around 24 hours after Orgasm and last for about 14 days. A long time.
I am using the symptom model found at
https://poiscenter.com/forums/index.php?topic=3651.0I have removed the symptoms that don't apply to me and I have added a few more with an *.
Allergy-like symptoms- Light local swelling (groin, urethra, prostate)
Flu-like symptomsNone
Cognitive symptoms
- Memory problems
- Cognitive problem
- Difficulty concentrating
- Speech impairment
- Slow thinking process (bradypsychia)
- Dyslexia
- Lack of mental focus
- Insomnia / sleep pattern disturbance
- Impaired problem-solving capacity
- Inability to make decisions, poor judgment
- Decreased work capacity
- Poor task management
Systemic symptoms (neurological, muscular, dermatological, ...)- Lack of coordination / clumsiness (light)
- Sensitivity to noise, sensitivity to light (photophobia)
- vision processing altered - poor vision at night
- Light headache
* Stomach slowly emptying - food sits in the stomach forever.
* Gasping for air (light)
* Trigger for Ulcerative colitis symptoms
* Dry mouth
* Burning tongue sensation (varies)
* Lower HRV as measured with OURA ring
* Lower deep sleep time
Emotional/psychological symptoms- Anxiety
- Fatigue +
- Irritability
- Emotional instability/mood swings
- Emotional intensity
- Personality changes into an irritable and anti-social type
- Difficulties interacting with others/urge staying alone
- Impulsivity
- Feeling impatient
* Nightmares - recurring where I am lost and confused in a city and in danger
