Good idea, @seamyb
! I’ve only been ill for a little over 1.5 years and need more supplement education, looking forward to reading the thread as it develops. I’m cautious to try new things because of cost and because I don’t know enough about co-factors or my own specific biological makeup yet.
I’ve continued taking the following, as I’ve been on them for 20 years in my healthy life and they seem to help ME/CFS folks in general too:
- Magnesium 900 mg/day (I’ve had to double up from 500 mg/day due to a recent mg deficiency from an MCAS flare). I took it for migraines and sleep in my pre-illness life, and I feel noticeably more tense now if I don’t take it. Side effects are looser stool, but I have constipation without it so I’m all in for that.
- Calcium 1000 mg/day (I have dairy intolerance, so it goes with the magnesium)
- Omega 3 3000 mg/day. No side effects. It helps me immensely with PMS symptoms.
- Vit B Cyano 1ml injection/month (switched from sublingual to injection when I got sick). No side effects for me. It noticeably boosts my mood, and maybe helps a bit with brain fog.
- Vit C 1000-4000 mg/day. This one has been tricky, since I have MCAS reactions to oranges. I’ve been on and off different types of Vit C several times during my illness, looking for something that doesn’t make me react with respiratory symptoms, headache and acne (anyone else get acne with MCAS?). I’ve been taking a powdered form for a few weeks now and it seems to be ok but I still take it intermittently, not feeling super confident about it. I do sleep better and have less rashes when I use it. 🤷🏼♀️
I take an H1 antihistamine when I have a big MCAS flare, although I can’t take it more than 1 day at a time since I’m intolerant to the binding agent in the pill (corn) and it counteracts the benefits after 1 dose. Go figure.
I also take 100-200 mg of Ubiquinol during a crash, gives me a nice boost to settle my heart rate and general mental health/energy while I recover. It reduces my sleep too much for regular use, plus I’m not confident about co-factors if I was to use it more.
Current supplement goals:
I’m working with Quercetin and Curcumin this week for the first time, since I got my first Pfizer on Friday and have been worried about a big flare. They’ve been extremely effective for me - mild reaction to the shot for the first 4 days with taking Q & C, and then I had a massive scary flare on day 6 (yesterday) after they wore out of my system. Took an antihistamine and Quercetin and feeling mostly ok today, but I haven’t taken Curcumin again yet because my sleep was badly affected the first few days I was on it. I’d like to figure out how to use it permanently, I have a feeling my high inflammation would respond well to a regular Curcumin dose. I did a deep dive search here for Curcumin experiences (sorry, not enough brain to find the links): lots of folks say they get bad sleep on Curcumin, and one woman said it chelated her iron... which amazingly makes sense since my dad has recently had remission of 45 years of terrible Restless Legs Syndrome by high dose iron infusion. This will be the topic of my next visit with my doc. If I can figure it out, I may not need to take the troublesome antihistamines anymore.
, I’m very interested in your Cumin experience. Will put that on my list of things to look into. I also have increased energy and appetite with collagen powder in smoothies (helpful since I’m severe and have bouts of extreme weight loss) so I want to try a regular amino acid supplement when I’m a little more stable - tried it for 2 days once and didn’t feel great, but it could have been a different trigger.