• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

What supplements & meds do we all take?

Belgiangirl

Senior Member
Messages
108
I would like to compare what anyone here is taking and if possible how this affects their health.
So we can compare, give feedback and do suggestions at each other.

If you want to also be open about blood labs this will be extra interesting.

My list @ each morning
- highdosed magnesium 900 mg x 2
- L-carnitine
- NAC forte 600mg
- Q10 / Ubuiqunol
- Resveratrol 25 mg
- D-ribose
- selenomethionine (sometimes)
- sometimes Vit E (got it from someone) and vit D

Want to start with:
- Mucoperm (for intestinal health)

Evening:
- Betmiga (overactive blatter, otherwise peeing +10 times a night)
- Propanolol (betablocker 40 mg) if palpitations or arhytmias
- if I know next day will be long/effortful: lormetezepam 1 mg


Blood labs:
- low ferritin
- low Vit D
- For the rest no shortages



Did:
inject myself with Vit B12 hydroxocolabamine --> I want to put a warning for this, see other topic!
 

pamojja

Senior Member
Messages
2,397
Location
Austria
- highdosed magnesium 900 mg x 2

Just a short comment on magnesium supplements: one always has to read the supplement facts, and distinct between elemental magnesium, and it's captions. Like Magnesium "-oxide, -citrate, -taurinate, -glycinate, threonate, -lysinate, -ascorbate," etc. The elemental part is usually only a fraction of the total compound, and by no distinction intake very often overestimated.
 
Messages
52
As my symptoms of brain inflammation are exclusively reflected in low mood and energy, anxiety and the inability to tolerate any stress, I use nothing for physical pain.
Even Ibuprofen is only used to lower my sense of inner agitation.
  • NAC
    • 600mg
    • 3x day
    • lowers inflammation symptoms; essential
  • LDN
    • 3mg
    • each night
    • helps sleeping
    • it seems to help to lowers inflammation symptoms
  • a Chinese mixture from my acupuncturist lady
    • 4 capsules
    • 3x day
  • different herbs as capsules ( each 500mg): mostly from reading Stephen Buhner
    • Curcumin; Rhodiola; Polygum Cuspidatum; Cordyceps; etc.
    • multiple times throughout the day
    • Polygum cuspidatum is essential; lowers inflammation symptoms
  • Trazodone
    • helps to relax
  • Ginger tea: also a receipt by Stephen Buhner
    • each day
    • helps to relax and fight of infections
  • Vitamin B12 + D3
  • Inositol powder
    • anti-anxiety
  • D-Ribose
  • Hoggar night
    • sleep aid
  • Ibuprofen
    • lowers inflammation symptoms; try to avoid intake each day
  • NAG
    • as per suggestion of @Hip
This is mostly my stable intake for the last months.
Over the years NAC, Trazodone, LDN, Polygum Cuspidatum( Resveratol), Ibuprofen, Inositol and sleeping pills
habe helped me the most. I would call them essential :thumbsup:

The post about what hasn't helped would me much longer :lol:
 

Wishful

Senior Member
Messages
5,740
Location
Alberta
I tried lots of things. In 18 years, I've only found two that work reliably: iodine or T2 (one dose needed every 21 days) and cumin (a level tsp blocks physically-induced PEM for 3 days). Everything else either didn't have a noticeable effect, had a noticeable effect only for a short time (then stopped working), or had a noticeable negative effect.

As FinRinTin said, the list of what didn't help would be long indeed.
 

percyval577

nucleus caudatus et al
Messages
1,302
Location
Ik waak up
I finally have come to four categories for myself. Especially 3. and 4. may depend on 1., as 1. makes for an improvement, paying attention to my two impacts.
  1. What not to do to the body
  2. What well to do to the body - possibly helping with deficiencies, at least countering some ill effects
  3. Replacing metals (in the brain, as I think) - only under good circumstances
  4. Helping epigenetics(?)
It turned out to be (so to say):
  1. lower mangnese diet (iNOS in microglia) === no vitaminB6 supplementation (indirectly iNOS?) === no B3?
  2. Vitamins B2, B1, B7, B5 - (TCA cycle) === GABA + Taurin
  3. chelating by citrate acid in lemon juice (1 lemon in 1l water) === intake by eating (milk) choclolate
  4. Vit B12 (methylation, I think DNA and histones) === acetate in vinegar for acetylation? (in histones)
I also tried carnetine (without any effect, but taurin may help with fat resorption in the intestinal),
and some other amino acids supposed to help the TCA cycle, especially lysin and methionine have been good.
Magnesium (carbonate, I think it was) had an effect, maybe I should do it again?
Ibuprofen was very good with inhibiting iNOS (via COX2, I think it is), but I did it only when I had tooth pain,
maybe I will give it another shot (200mg on each of two days) and will then do 3. and 2. and Ibu may help for good distributions in the brain (?).
Doxycycline, milk thistle, resveratrol, as well as some other stuff got soon out of work.
Hops was the only other drug that didn´t stop with inhibiting iNOS, I drank beer for three cold seasons and for one warm season. The combination helped to read at least a bit of all the inputs from the internet (I´m so thanksful for that). Now alcohol is completly bad (even in beer).
I didn´t test curcumin-oil (I was afraid of manganese in the oil, though there shouldn´t be any, and even if so, the oil should help to keep it back and it should not get uptaken quickly).
NAC was on the cards somehow, but I never tested it.

The manganese thing I do since summer 2015, it was for three months basically very good, then relapse and only slow improvement - due to lacking 2. and 3. I guess.
2.- 4. I do only since this year after having tested metals seperatly last year. Ag, not found in choclcolate; Ni; Cr; Zn; Al, all of which have been good, though Al dishes I will avoid. For two years I was afraid of manganese in chocolate, but in chocolate there is also oxale acid, a Mn scavanger. I must not eat dark chocolate though.
B12 is also an iNOS inhibitor, and a NO scavanger (hydroxycobalmin).


---
Concrete I do (at the moment):
  1. I can feel the Mn in food, and probabaly I was for 4-5 months deficient. I might eat foods up to 800µg/100g, don´t know exactly, resorption differs (anyway).
  2. After meals, B2 (5mg), sometimes B1 (50mg), B7 (2.5mg), first day today B5 (3mg), will look if the order will change having now B5 in the boat. I often wait some time before taking in the next one.
  3. Amount of lemon juice differs, now it´s most often only one lemon a day. Chocolate intake is now often quit a lot, 200g over the day + cocoa drink (I should diminish it), whereas two months ago it was more lemon water.
  4. I put 150µg cyanocabalamin into the lemon water. I also put one drop of vinegar (5% acetate) into the water (it has an effect, at least).
Every morning I start: 250g GABA + 250g Taurin, then some Lemon Water (using a straw), then 50µg extra Selenium, then some Chocolate, then some breakfast, then the Vit´s.
Over the day I take Lemon Water (B12, Acetate) and Chocolate when I feel it should be good (I have 4 months disability left, it´s a race).
Before sleeping I do again GABA+Taurin and Selenium, and here after meal.
 
Last edited:

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
Now? Most of the time, only maintenance doses of general vitamins and minerals. Why?
Because nothing changed anything with me.
Granted, I didn't try so many many possible treatments. I never tried antibiotics or anti-virals for example as I have a history of responding to them very very badly.

When this all first started 14 months ago I was sure it was a peculiar form of flu; probably a strange virus, or one I'd never encountered before.
I took Echinacea Angustifolia Root 3-1 tincture 4-5 times daily, 5-6 cloves of organic garlic daily, 2000-5000 Vitamin C, Vitamin D3, Myrrh tincture, (Ginger, Meadowsweet, Fennel, Peppermint, and Licorice just as support for symptoms.)

The Echinacea, Myrrh, vitamin C high dose, and garlic were tried and tested remedies which with me, always shifted anything. I had cured myself of quite severe infections both bacterial and viral, in the past with that mixture. I had also treated myself for venomous snakebite in the past with that and it had worked very well with no side effects at any time.

After 4 weeks there was no improvement. I was now entering a remitting-relapsing condition.
Stopped taking any of those herbs as whatever I did, made no difference. That shocked and surprised me to be honest.
I would start to feel better then it would all come back again....and again....

I tried high dose vitamin B. Had some negative effects after improvement for 4 days! Went back to maintenance dose.

Tried Methyl B12 1000 (though bloodwork showed my B12 was normal) That had very little effect and I took it for weeks, dropping sometimes to 500.

Tried bio-available ubiquinol (Q10) for 2 months, max. dose. It made no difference.
Resveratrol -same thing.

Dropped even 1000mg vitamin C daily! I would seem to be doing quite well on 1000-2000mg per day, coasting on that for maybe a week and feeling glad....then crash....symptoms all came back -again.

One thing did seem to make a slight difference, and that was Astragalus. But after 2 months, that stopped having the same effect and I was still relapsing. Not cured.

Tried homoeopathic treatment Kali Phos. prescribed by a qualified homoeopath.
That did seem to make a difference.....for a few weeks....before it didn't.

I craved fats, so tried getting more calories from fats instead of carbs....made no difference -just tasted nice. I don't really "do" much dairy except for salted butter, but experimented with other fats apart from dairy.

What else?
I never needed sleep remedies. I usually sleep like the dead.
I get low back pain (mechanical -not renal) but rest cures it -instantly, so don't take pain killers.

My blood labs -all the way along have been spot on for everything. Normal. Same for urine tests. All other things, checked by doctor/s perfectly fine and normal.
At a doctor's glance, I look like a fine healthy specimen!

So now on just ordinary maintenance doses of vitamins and minerals, and a balanced non-spectacular diet, I am exactly the same as I was with all of the above things. That is, remitting-relapsing.
In remissions I feel normal except just less stamina. In relapses I sometimes feel almost as bad as I did the first 4 weeks. Nothing seems to change that.
 
Last edited: