• 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 (FM), 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 pills/supplements do you take everyday?

Messages
35
I thought it might be interesting to have a thread where everyone lists everything that they take to help with their symptoms.

I have had to stop taking my pills for now because my stomach just can't handle them but before that I was taking-

1 x l-carintine fumerate
1 x Same
1 x TMG
2 x metafolin
1 x B-complex
3 x omega 3
3 x vitamin c
2 x Zinc
1 x Calcium/Magnesium
1 x vitamin A
1 x vitamin D
1 x vitamin E
1 x alpha lipotic acid
1 x anabol naturals dibencoplex
1 x potassium
5 x enzymatic therapy b12 sublingually

I will need to try and get back to my protocol and I thought it would be helpful to see what others are taking to see if there's anything else that I could add that might help.

I am still looking for my magic bullet!
 

physicsstudent13

Senior Member
Messages
611
Location
US
does vitamin B help really if my levels are high? I just keep getting cystic acne and am still foggy some days. sam-E seems to help a lot
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
I am not going to list all of my pills because I take some for things other than ME and there is some overlap. I'm not up to the mental challenge of deciding which ones to include here.

To keep them from upsetting my stomach, I divide them in 5 groups and have a light meal (protein, carb, and fruit or vegetable) with four of the groups. I have a lighter snack with the bedtime pills, which don't include any that might upset my stomach.

There are two problems with this.
1) I am gaining weight.
2) I am never hungry and am getting to where I don't want to eat. I sometimes put off my meals so long that it keeps me up later at night than I would like.
 
Messages
10
going to try posting this here.
I am wondering whether what I am doing is anywhere close to correct?
I went down the Methylation Breakdown list and I had all the stages: angular cheilitis, deep tissue inflammation (Plantar Fasciitis), severe muscle aches and pain (all over), MCS, asthma, allergies, flu like illness, no exercise tolerance, edema and tachardydia, weight gain on minimal food, and finally the last straw was CNS dysfunction (tremors on my index finger and thumb).
So my protocol is:

morning
1,000mcg AdenB12 1000mcg MethB12 (always sublingal)
800mcg folate
L-Carnosine
D-Ribose 2000mg
(Biotin, B1, B2, B5, P5P, Vit C)

lunch
1,000mcg AdenB12 1000mcg MethB12
800mcg folate
L-Carnitine fumerate 500
(Seleium, zinc, Vit C)

dinner
2,000mcg AdenB12 2000mcg MethB12
1600mcg folate
L-Carnitine fumerate 500
(magnesium, selenium, zinc, potassium, Vit A, Vit D3, Vit C)

When I take the 2000mcg B12 I feel very tired, that’s why I take it at night. But my finger tremors have gone away (they return if I stop adenB12) but my herniated disk in my neck is killing me (maybe cause my nerves are awake now? idk). Worried about low potasium but not sure how to tell since my heart rate is already high at 95-105.
Any feedback would be wonderful. Thanks.

J.

Also, I have MTHFR, CBS, COMT, and Hashi’s (treat w/Armour)
 
Messages
60
Location
Michigan
1 x Yasko's new All In One multivitamin, every 2 days to start out
1 x Seeking Health brand Trace Mineral complex (Selenium, Zinc, Manganese, Molybdenum, others)

2 x vitamin C (500mg each)
1 x Zinc lozenge (15mg) - every other day
1 x vitamin A (active form, retinyl palmitate, 5,000 IU)
1 x vitamin D3 (5,000 IU)
1 x vitamin E (gamma E tocopherols, 40IU/140mg)

with food
1 x Jarrow probiotic, allergen-free (rotate with Klaire Labs protbiotic)
1 x BioGest (Thorne brand) contains Pancreatin and Protease along with Ox Bile
1-2 Nordic Naturals Ultimate Omega fish oil

Night/bedtime
2 x Magnesium Malate w/malic acid (140mg)
1 x Neuroscience brand Calm PRT (rhodiola, PS, taurine, glycine low doses)
1 x NightRest, Source Naturals brand (1/4 tablet)
.25mg melatonin

BeCalm Spray - just bought
9mg Iron - only take every couple of days, I'm vegan

SHMT spray 5x/day
Resveratrol spray 3x/day

I also have Hashimoto's and take NatureThroid grains. Also take Cymbalta.
 

pmn

Messages
6
At the minute all I take is:

Thorne Basic Nutrients V (6-8 caps a day)
Thorne Methyl Guard (6 caps a day)
Extra Zinc and Copper

I did start doing Yasko for around 9 months, but it didn't help me, and the cost was ridiculous.
 
Messages
10
Crap, so nobody is using the protocol, don't understand??....

maybe they are all well so they are not on the site anymore.. lol..

J.
 

triffid113

Day of the Square Peg
Messages
829
Location
Michigan
going to try posting this here.
I am wondering whether what I am doing is anywhere close to correct?
I went down the Methylation Breakdown list and I had all the stages: angular cheilitis, deep tissue inflammation (Plantar Fasciitis), severe muscle aches and pain (all over), MCS, asthma, allergies, flu like illness, no exercise tolerance, edema and tachardydia, weight gain on minimal food, and finally the last straw was CNS dysfunction (tremors on my index finger and thumb).
So my protocol is:

morning
1,000mcg AdenB12 1000mcg MethB12 (always sublingal)
800mcg folate
L-Carnosine
D-Ribose 2000mg
(Biotin, B1, B2, B5, P5P, Vit C)

lunch
1,000mcg AdenB12 1000mcg MethB12
800mcg folate
L-Carnitine fumerate 500
(Seleium, zinc, Vit C)

dinner
2,000mcg AdenB12 2000mcg MethB12
1600mcg folate
L-Carnitine fumerate 500
(magnesium, selenium, zinc, potassium, Vit A, Vit D3, Vit C)

When I take the 2000mcg B12 I feel very tired, that’s why I take it at night. But my finger tremors have gone away (they return if I stop adenB12) but my herniated disk in my neck is killing me (maybe cause my nerves are awake now? idk). Worried about low potasium but not sure how to tell since my heart rate is already high at 95-105.
Any feedback would be wonderful. Thanks.

J.

Also, I have MTHFR, CBS, COMT, and Hashi’s (treat w/Armour)
Well, I see no B3, which is required 3x in the Kreb cycle which is HOW ENERGY IS PRODUCED. You should be taking a COMPLETE B complex 2x/day...to me that is a glaring omission.
Why carnosine?
Why not CoQ10 for the Kreb cycle to make energy?
How much magnesium? (This is a common deficiency)
What form and how much zinc? (One should not supplement zinc w/o copper (causes neuropathy JUST like B12 deficiency))
How much D3?
Why not E? (Free radicals dysregulate the methyl cycle. C is aqueous so cannot act in cell membranes where E can act).
Consider olive leaf extract for stomach issues caused by insufficient HCL (overgrowth issues, if that is what your stomach problems are)
What kind of diet do you eat? (Do you eat 80g of protein or more or less?)
How old are you (over/under menopause/andropause)?
Generally some lab info is helpful in evaluating a protocol. I mean you start with general principles but then you tune for what YOU need based on something (and I prefer that something to be labs)
 

triffid113

Day of the Square Peg
Messages
829
Location
Michigan
My protocol is too long to type in. It's kindof too long to even be kept accurate. I change it all the time. Like I am about to add berberine to lower cholesterol and I have tentatively added forskohlii to "help my cells be more sensitive to thyroid hormone" but I am re-evaluating that decision. I leave things off because I run out of time to dish out all the vitamins and all sorts of crazy things (things I never used to do before there came to be so many vitamins). I take them all at once and then I get dehydrated from it so I split them up and then I never get around to taking the last batch. But I never actually forget my pills (I mean that I take the bulk of them almost every day my WHOLE LIFE (my mother stuffed them in me as a sickly sickly baby).


Supplement, Brand - Dose - Reason
Thorne Basic Nutrients IV with copper and iron and iodine - 3 of 6/day (1/2 a multi) - Trace minerals etc.
Vitamin A 10,000 IU (NOT beta carotene) (any brand) - 1/day - keratosis pilaris[10]; low ferritin, normal hemoglobin[11]
Thorne Basic B, active B complex - ~25mg (2/day) - Methylation[1]; energy (Kreb)
50mg P5P (Country Life) - 1/day - Methylation[1]; hypochlorhydria
800mcg methylfolate (Solgar) - 1/day - Methylation[1]
1g TMG (Soloray) - 1-2/day - Post-prandial methylation[1]
Mineral Ascorbate ( Ester C ) - 2g/day - Anti-oxidant; methylation[7]
10,000 IU Vitamin D (Superior Source sublingual) - (1/day, for 5 days/week) - VDR genetic defect; repeat blood test verified
1g d-alpha-tocopherol (any brand) - 1/day - Antioxidant; Offsets peroxisomal beta oxidation caused by DHEA; [2]

300mg gamma-tocopherol (LEF) - 1/day normally; 2/day allergy season - Proven to lower post-prandial blood sugar, which affects blood pressure
K2, one of: MK-7 100 mcg [3] (NOW); MK-4 15mg dose (OAR, Canadian brand) - 1/day (smaller dose); 1/week (larger dose) - Required to deposit calcium in bones instead of arteries; cleans calcium and plaque out of arteries; osteopenia
Calcium citrate + magnesium citrate 1:1 ratio (Nutricology) - 400-600mg, divided dose - Hypertension; VDR genetic defect; osteopenia; energy; normal sleep (low magnesium causes insomnia); citrate inhibits kidney stones
50mg Zinc piconolate (NOW) - 1/day normally; 2/day allergy season - Rebuild tissues destroyed by allergies; thyroid support during allergy season[4]; osteopenia; hypochlorhydria (achlorhydria during allergy season)[8]; methylation[5]
2 mg Copper piconolate (Thorne) - 2/day - Deficient per testing; Cross linking of collagen to prevent aneurism; assists wound healing[13]; osteopenia; arthritis; hypochlorhydria; methylation[6]
Cruciferous Veggie Extract (LEF) - Contains I3C, DIM, apigenin [8], broccoli, cabbage, cat’s claw, rosemary, watercress. - 1/day - Ward off cancer (make less cancer-causing hormones out of HRT)
1g Tyrosine (NOW) - 2-4/day, depending on protein consumption - To make enough thyroxine, dopamine, and adrenal hormone on a low protein diet. (low BH4 due to genetics, inability to excrete large amounts of ammonia)
Thyrocsin Thyroid Cofactors (Thorne) - 1/day - Thyroid support [12]
100mcg selenium, 225mcg iodine, 500mg tyrosine, 100mcg methylcobalamin (B12), 500mcg Cu picolinate, 200mg C, 100 IU E (d-alpha), ashwaghanda 150mg
Coleus Forskohlii 100mg (Thorne) - 1/day allergy season - Thyroid support [12]
Selenium 200mcg (any brand) - 1/day - Thyroid support [12]; low selenium in local soil; ward off breast cancer
Olive Leaf Extract (Soloray) - 1g/day - Lower blood pressure (strong ACE inhibitor); hypochlorhydria (kills pathogens in place of HCL)






DHEA oral pills that go through the liver - 75mg - Lowers & stabilizes blood pressure; Prevents constant panic attack/low blood sugar; Protects against glutamate toxicity (otherwise I am extremely sensitive to glutamate); Causes peroxisomal beta oxidation prevented by high dose Vitamin E (higher than I take)
Pregnenolone - 30-50mg (currently 50) - Balance DHEA (makes progesterone); anti-cancer; for the brain
Melatonin - 6mg - Second strongest antioxidant for the brain next to dopamine.
Estradiol - ?? dose given by injection


Progesterone - ?? prescription


CoQ10 (ubiquinol, active form) - 200mg/day - Heart health; Kreb cycle/energy
1g. Omega-3 - 2/day - Heart health
Spirulina 500mg (Healthy Origins) - 21/day allergy season - (10.5g)
Significantly reduce allergy symptoms
D-mannose &/or cranberry - As needed for UTI - Treat UTI (to protect blood pressure)
Sufficient sleep - Blood pressure rises w/o sufficient sleep
New Additions:


Nattokinase - 2000 FU (1/day) - Clean arteries (plaque detected in carotid artery via ultrasound)
Pomegranate (POM) - 4 oz./day (5 days/week only – inhibits CYP3A4) - Melts plaque 13% in 3 months
Pantethene - 900mg total (2/day) - Adrenal support, Lower cholesterol
500 mcg Chromium picolinate (Thorne) - 1/day - Lower post prandial blood sugar and thus blood pressure
Vanadyl sulfate (LEF) - 1/day - Lower post prandial blood sugar and thus blood pressure
40mg UC-II (LEF) - 1/day - Desensitize immune system to collagen fragment to prevent mounting an allergy attack
PQQ 10mg, R-lipoic acid 100mg (LEF) - 1/day - Add mitochondria (for sports)

-----

1. Active B supplements required to manage homocysteine due to genetic defects in methyl cycle.

(This ENTIRE protocol required to normalize homocysteine: 2Thorne Basic B – divided dose, 2g TMG, 50mg P5P, 800mcg mfolate, D in blood at 70, sufficient anti-oxidants and Zn, Cu, Mg)

2. High dosage required since I have severe allergies which mobilize the immune system and cause high oxidative stress

3. MK-7 is toxic in a much higher dose; MK-4 is not.

4. Theoretically I supplement zinc until I can breathe during allergy season. Actually I stop at 100mg. During a cold it takes 150 mg for me to breathe but a cold does not last as long…I appear to be unwilling to take over 100mg zinc for more than a few days.

5. Cofactor of methionine synthase

6. Lack of copper causes same symptoms as B12 deficiency (affects methylation)

7. Free radicals dysregulate the methyl cycle





8. Apigenin is an aromatase inhibitor; also strongly anti-cancer




9. Zinc + P5P required to make HCL


10. keratosis pilaris is caused by Vitamin A deficiency or inability to convert beta carotene to Vitamin A.

11. Retinol Binding Protein required to ferry iron around

12. During allergy season TSH moves from 2.1->3.2 and higher, raising cholesterol and blood pressure and slowing GFR, and as it keeps moving up the adrenal gland goes out causing low blood pressure, a need for salt to prevent fainting, and no energy whatsoever to lift a finger (thyroid winds down). The climb of TSH is slowed by large zinc intake but not stopped. More thyroid and adrenal support needed during allergy season. After allergy season GFR, thyroid, and adrenal return to normal as measured by creatinine, BUN, Cytatin-C, TSH.

13. When I take copper my wounds heal. Otherwise not, even w/o excessive zinc.
 

stridor

Senior Member
Messages
873
Location
Powassan, Ontario
frenchmoxie triffid113
Hi fm,
I was wondering how much mB12 and adb12 you take. I have TCN2 "frailty gene" as well and think that it drives my symptoms more than my c677t.

triffid, you have convinced me to pay more attention to niacin. I do a B injection in the morning but b3 is intentionally left out. I carry it with me all the time as a "methylation antidote" but only needed it a couple of times in the beginning when on large doses of mfolate and a third of the mB12 that I take now.
I took it for a couple of years in large amounts when I had high cholesterol. It is a methyl receiver and I am not convinced that it was coincidental that II was diagnosed with Bipolar at that time. So I have tip-toed around the niacin thing but will consider that today.
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
Morning:-
10 mgs citalopram (for depression caused by ME)
1mg sublingual B12 (for brain-fog)

Evening, with food:-
8 capsules Vegepa (EPA plus EPO) (for general functioning and fog)
800 mg Magnesium Citrate (for RSI and cramps and myoclonic jerks)
800 mg Calcium Carbonate + 5 micrograms vit D (to balance the magnesium and protect bones)
15 mgs Zinc + 100mgs vit C (immune support)

1g of phytosterols, for cholesterol reduction, non ME-related.
I won't take statins because (mainly ) of ME, but I doubt I'd take them if I was well either.
I don't think they are safe for anybody, just a gravy train for big (p)Harma.

I'm not doing methylation stuff - I can't get appropriate tests to find out what needs supporting.

This is just what I've found helps me.

I used Hummingbird's site and Dr. Myhill's site for ideas, tried a few out, dropped some which had bad effects
(Co-Q-10, NADH) didn't bother with others which were too expensive (D-ribose).

I use a carnitine complex to help prevent payback if I have overdone things - again, it's far too expensive to consider daily use.
 

triffid113

Day of the Square Peg
Messages
829
Location
Michigan
frenchmoxie triffid113
Hi fm,
I was wondering how much mB12 and adb12 you take. I have TCN2 "frailty gene" as well and think that it drives my symptoms more than my c677t.

triffid, you have convinced me to pay more attention to niacin. I do a B injection in the morning but b3 is intentionally left out. I carry it with me all the time as a "methylation antidote" but only needed it a couple of times in the beginning when on large doses of mfolate and a third of the mB12 that I take now.
I took it for a couple of years in large amounts when I had high cholesterol. It is a methyl receiver and I am not convinced that it was coincidental that II was diagnosed with Bipolar at that time. So I have tip-toed around the niacin thing but will consider that today.
As you see, I am not advocating a high amount, just a 2x daily dose such as found in a B complex. HOWEVER, I personally find wonderful effects from high dose niacinAMIDE - it makes me skin feel luxurious and so much loving to be touched! However I take too many pills to consider nice-to-haves.

And my liver is not what it used to be (something I am taking is using up my capacity for high dose niacin...I have considered that it might be the Olive Leaf Extract I take (I believe polyphenols are also methyl consumers) but the OLE is critical to my very high blood pressure AND to my ongoing gut integrity, so I choose the OLE. And polyphenols also are excellent antioxidants which helps methylation, so I'm not gonna stop taking them. Niacin is important to wound healing, which is why it supposedly helps cholesterol - it heals the wounds in the blood vessels that make rough spots for cholesterol to stick to. So if it becomes necessary that I take more niacin due to some sort of wounding I might slip the OLE at that point, but for now the way it is works for me.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I had to do a list of the things I take for a ME/CFS research study the other day so here it is.

Prescription drugs

- Florinef (for POTS)
- Clonidine (for hyperadrenalic POTS and orthostatic hypertension)
- Pramin (metoclopramide) ME/CFS Nausea (when needed)
- Salbutamol (asthma when I get viral reactivation) (when needed)
- Temazapam (insomina .. when needed)
- Melatonin (insomina .. when needed)
- Cortiosteriod cream (rashes/hives ..when needed)
- Ponstan (Mefenamic Acid .. when needed.. severe period pain)

* Im supposed to be on cholestrol lowering drugs (high cholestrol) but cant take the statins due to they make my mind fog go far more severe to the point Im completely non functional probably due to their mito dysfunction affects
* Im currently needing also to go onto an insulin lowering drug (hyperinsulinemia which is worsening even on strict diet for it, 3x normal range. about to become diabetic).
* I also should be on testosterone (deficient but severly reacted to the testosterone patch so told my specialist I wasnt having another so choose instead to risk osteroporosis.. testosterone is important for the bones).
* Im also currently needing antivirals to treat a reactivating virus I have cant find a dr to treat it (my specialist wont treat me unless Im having 6 or more outbreaks of it a year).

(Im down one of my prescriptions due to no longer having GERD which my insulin lowering diet has treated). Whoever says ME/CFS patients dont need prescription drugs to help symptoms dont know what they are talking about, I'd be so lost and suffering without mine. (I'd be on 12 prescription drugs right now if I had better doctors or wasnt badly reacting to what they wanted me to take)

other drugs and supplements

- D3 (had a severe deficiency, we've never managed to get my D3 in normal range)
- Lithium Orotate (nil showing up in my body on hair tests, still nil even after 2 years supplementations..something weird with my body here. Taking this has improved my white blood cell count).
- Molybdenum "Molyzinc" (deficiency.. after 2 years of supplementation, Im still deficient thou now half way to getting a normal level. This has improved my brain, without it I cant count in my head)

- methyB12 (MTHFR polymorphism)
- Folinic Acid (MTHFR polymorphism)

- Ashwagandha (Adrenal adaptagen) Ive had abnormally low cortisol on some of my test results. I either arent taking enough of this or its not helping thou. I did trial low dose hydrocortisone in the past due to my abnormal test results but I didnt notice any benefit (maybe not enough?)

- Selenium (helps my hair and nails otherwise they break, anti-oxident and I also did have extremely high copper 2 years back so started this as it helps lower copper)

- Fibre Supplements (IBS-C)
- Epsom Salts (I take by mouth when needed due to a bowel prolapse due to complication of a drug and IBS-C)

-Panamax (I often take it with the Ponstan as the Ponstan often dont help my pain enough)

- Doylamine Succinate (insomina ..when needed)

- Asprin (when needed eg headaches)

- Vit C (at times eg allergies, viral reactivation)

..........................................

My supplements are about to increase as I want to treat more deficiencies Ive been found to have and also add in a couple of other things due to test results eg I need to be taking potassium re the Florinef Im on (depletes potassium) and also cause I currently have mineral misbalances with it being too low, so I need to add this. My specialist also wants to add more things in and increase my doses when I get to see him.

Does anyone know of a multi supplement which contains no magnesium or calicum (mine are high and Im not on supplements with these), Im after a supplement which contains a decent amount of molybdenum, tungsten and germanium or a couple of these things but which wont increase my mag and Calicum? If I try to increase my molybdenum further to try to fix the deficiency with the molyzinc supplement, it is going to put my zinc in the high range. Im about to double my lithium orotate dose but hair test showed I have no tungsten or germanium either which could be important
............

I also wear medical compression stockings (currently trying to sort out a new referal for another pair my old ones are ruined, Im needing 30-40 pressure to tummy ones) and have to use a lot of salt. I gave up with taking salt pills as I had to take too many and they were extremely expensive. Im also on special diet for my issues.
 

physicsstudent13

Senior Member
Messages
611
Location
US
by the way if I take GNC phosphitadyl choline lecithin do I need to take citicoline, alpha GPC for memory, cognition or is it the same? or would magtein, sam-E, methyl b-12 help more? I take a regular b-complex. anyway I'll post my supplements here
I started ubiquinol and am thinking of adding atp from piping rock for my chest pains, exhaustion
 
Messages
10
triffid113 - thank you for the feedback, very much!! :) You gave me lots to think about.. You have a very intense schedule.
answers:
B3 will give me a migraine, (generally because of vasoconstriction, however I have been able to tolerate some recently).
Carnosine, I forgot why I thought that was good.. sigh.
No CoQ10 because I have CBS and it increases the transulfuration pathway.
Magnesium Citrate 400 mg, sometimes 800mg.
Vit D3 5000 IU, to much makes me feel bad.
Haven’t been a fan of Vit E, not sure why, I think it has to do with my hashi’s, need to think about that one.
Gluten Free, low processed foods diet.
 
Messages
21
Location
Sweden
Amount and roughly the order in which I take them during the day.

NAG 750 mg
amsulipride 25 mg
panax ginseng (for 3 weeks then rest 1 week)

metafolin 800 mg
encymatic/solgar/dr.best b12 1,000/1500 mcg
d3 5000 IU
k2 mk7 90 mcg (every 3rd day)
flax seed oil 1,000 mg
coq10 100-200 mg
potassium 198 mg

ALA 150 mg
carnitine fumerate 855 mg
l-theanine 100 mg

vit c 1,000 mg
b2 100 mg
b5 1,500 mg (spilt over 3 doses/day)

metafolin 800 mg
omega 3 ~680mg
adenosyl b12 4,300 mcg

now probiotic
NAG 750 mg
mag glycinate 240 mg
melatonin 3 mg


things I've ordered to try next:
p5p 50 mg
solgar methylb12 5,000 mcg
zinc 30 mg
vit e succinate 500 mg
dopa macuna


things I'm currently taking but likely to discontinue:
grape seed extract
olive leaf oil
bacopa
 

physicsstudent13

Senior Member
Messages
611
Location
US
I'm taking
sam E, atp, l carnitine/ala, nac, phosphitadyl choline, coq10, d ribose, methyl folate, EDTA, serrapeptase, nattokinase