I have been in a long slow recovery from an illness, I’m stable now and decided to share some of my projects. This was one of those printed embroidery kits. To be honest it feels a bit like cheating because I was raised doing counted cross-stitch, but this was just the right speed for my brain at the time.
I saw someone mention off label use Misoprostol, I asked Chat GPT to pull all studies and papers that would have any connection to MCAS. It’s fascinating there is a gut barrier effect, a mast cell stabilizing effect, some extremely interesting effects on prostaglandins, and I’m sure so many other things that I have not found yet. But the best part for me is that’s it’s effective at low doses! I react to everything, but the medications I do tolerate are at the lowers dosage possible.
I am very optimistic that I can get my PCP to approve a trial, as long as I have studies backing up meds I want to try she has been really open to letting me lead my treatment.
So who ever mentioned this thank you so much, I can’t imagine where else I would have stumbled across this information.
I am hitting a wall, my progress has been pretty steady up until this is allergy season and my breathing is now quite compromised. I went in for some pulmonary testing and it did not go well, I struggled more after the albuterol challenge. From my perspective my muscles were just not coordinating right in order to get a full breath. I could breath steady ok, but as soon as I had to change up my breathing patterns for the testing I just could not do it.
I have had quite a few Dr’s suspect some hyper-mobility issues so I also wonder if part of it could be a fatigue issue with compromised pelvic floor dysfunction. It’s as if I get a cramp in my diaphragm, or a stitch in my side and can’t coordinate my muscles to breathe.
In the past I had similar issues with swallowing, I would choke when eating or drinking because I couldn’t seem to get the food to move down.
I restarted montalucast about a week ago, I’m able to sleep through the night without waking short of breath, my energy is better and I am breathing better.
Symptoms that are holding me back, breathing issues, chemical sensitivities, fatigue, brain fog, skin reactions. But I can function at 50% most of the time, I still struggle more around my cycle. I am living a semi normal life, I can drive, grocery shop, and attend my congragation on a semi regular basis at this point.
My current med combo- Famotidine 20-40mg 2x a day LDN 4.5 mg at night Guanfacine 1mg 2x a day Montilucast 5 mg 2x a day Amantadine 50 mg every 2-3 days Ketamine 150 mg nasel spray 2-3 days a week. Nicotine patches, 7mg, I have not been using this as much as I’m reacting to the adhesive. Cannabis, vape this is my most reliable treatment, for breathing, pain, and skin reactions. Usually only at night as I’m not able to drive and take it.
Supplements- Vit C Magnesium Quarcitenw/ bromaline Ginger Nettle Boron/riboflavin combo TTFD- just started this one Vit D Iodine
Adjunctive therapies- Acupuncture Massage Chiropractic Neuro feedback Mind body work Gym 2x a week. Red light EWOT Cryotherapy PEMF
Lifestyle adjustments- Air filters Water filters Fragrance free household, cleaning and personal care.