List your supplements

[silicon]

I take most supplements about 20 minutes before a meal (except for the pancreatin digestive enzymes, which are taken right before eating)

Immune System

Immunoglobulins (IgG 2000 DF by Xymogen) 2.5 grams
Inosine 1 gram 2-3x/day

these 2 above are apparently part of Dr. Paul Cheney’s protocol—and he apparently sometimes recommends “rotating” them—that is, take them for a few weeks, then lay off for a few weeks

General

Aloe vera (whole leaf organic) juice 2 tbsp 2-3x/day
(Sometimes) Seacure hydrolyzed white fish protein capsules
sea salt, NoSalt
chlorella (sometimes)
Colloidal silver (at some point—haven’t started yet)

Probiotics

goat milk kefir 6 ounces 3x/day
Karuna Maxbiotic 3x/day

Amino Acids & Protein

Ribose 7.5grams 2x/day
Taurine 1 gram 3x/day
Acetyl L-carnitine 500 mg 3x/day
Creatine 2 grams 2x/day

Minerals

Calcium (coral) 1+ grams total in divided doses at breakfast/lunch
Magnesium glycinate 1 gram total in divided doses 3x/day
Strontium 700 mg (taken away from calcium)
Silicon (BioSil) 5mg in divided doses 2x/day
Selenium 200 mcg
Zinc 50mg
Manganese 10mg
Boron 3mg
Trace minerals 2x/day

The calcium, strontium and silicon are for osteoporosis

Vitamins

Multivitamin (Jarrow B-Right) 2x/day, breakfast/dinner
Vitamin K2 5mg breakfast
Vitamin C 5 grams (sometimes more) in divided doses 3x/day
Pantethine 1.3 grams total in divided doses 3x/day
Vitamin A 25000 IU breakfast

Herbs

Hawthorn 3x/day (for heart)
Cordyceps 2x/day
Milk thistle 150 mg 2x/day

After a meal:

ginger capsules, peppermint oil softgel (some meals)
(boiled) Chinese herbs 3x/day after meals (also some boiled ginger tea)

 

[kurt]

Vitamin C, 500mg in the morning.
Olive leaf extract before bedtime
MMS when I have bad infections
Oregano oil, GSE, bee propolis or colloid silver for cold or viral symptoms
Lysine most days
Candex when candida flares-up
Acidophilus or home made yoghurt daily
Sea salt most days (only a small amount though)

various other supplement experiments from time to time, most recently I tried NT Factor

Also, diet is very important for me, I am simple carbohydrate intolerant. Mostly I follow the Body Ecology Diet (gluten free, no casein except fermented or cultured dairy, no sugar and very little fruit). My only grains are quinoa, millet, amaranth and a some oat

I have probably tried about 200 different supplements, protein/whey powders, strange drinks, vitamins and minerals, even drank clay and ate charcoal powder at one time. And I have used plenty of drugs, spent a year on antibiotics and 8 years on sleeping pills. But a series of NLP meditations, some emotional work and shifting of priorities helped restore my natural day/night cycle, improved my digestion and got me off most of the supplements, so now just need the basics. My functional level was not much better with all the supplements. I now realise that for me taking all the supplements when they were obviously not helping much if any, was a form of denial of having CFS, I was trying too hard to get my life back. The supplements just were not fixing the right problems I guess, because they never worked very well. Maybe I never found the right combination, wish there was some good testing for CFS to help us design the right supplement program.

 

[Victoria]

After a meal:

ginger capsules, peppermint oil softgel (some meals)
(boiled) Chinese herbs 3x/day after meals (also some boiled ginger tea)

Silicon,
you should take peppermint oil softgel 15 minutes before eating (not after a meal)

 

[Julia Rachel]

Hi Katie!
My son Blake takes over 45+ Vitamins per day, plus protein Powder, D-Ribose, DHEA....all prescribed by the CFIDS Specialist and based solely on Blake's Spectracell Nutritional Assay Blood Test. He has this test done 1-3 times yearly, then the vitamin and minerals are changed in dosages depending on what his body is lacking. It is my perception that our illness is causing malabsorption and that we are vitamin and mineral deficient. But what we are deficient in, is indivualized. So I think it is important to get tested for vitamin/mineral deficiency and to then have vitamins prescribed as to doasage, quantity and times to take. Blake takes his "regime" at 7 different intervals from waking to going to bed. Otherwise, I feel we are playing "the guessing game." And...I am finding...Quality is IMPERATIVE....the flushing Factor, etc. needs to be aknowledged and the correct vitamins need to be taken to counter some effects of essential vitamins needed, etc....One thing though that "might be Universal" for everyone....is The Study that came out on Wild Meditteranean Oregano Oil. 3 Drops per day supposedly helps stave off viruses and has been linked to lowering EBV Titers. We are doing a study on this right now.....Blessings.Julia

 

[silicon]

Silicon,
you should take peppermint oil softgel 15 minutes before eating (not after a meal)

Thanks Victoria for pointing that out! I had forgotten that the peppermint oil softgel was supposed to be taken before a meal—and thanks to your comment, I have started taking it before (some) meals. I had gotten into the habit of taking it after a meal because that’s when I often realize that my digestion is more imbalanced than usual—and then I would use it as a sort of remedy—although I generally find it very difficult to tell what’s really having an impact, and I am often left with mostly just my “intuition” to guide me.

 

[Victoria]

Thanks Victoria for pointing that out! I had forgotten that the peppermint oil softgel was supposed to be taken before a meal—and thanks to your comment, I have started taking it before (some) meals. I had gotten into the habit of taking it after a meal because that’s when I often realize that my digestion is more imbalanced than usual—and then I would use it as a sort of remedy—although I generally find it very difficult to tell what’s really having an impact, and I am often left with mostly just my “intuition” to guide me.

Yessireeee, it's really important to follow the directions on the bottle/pack, whether it be supplements or drugs.
Some need an empty stomach, some need food or digestive juices to cushion or break them down & so on.............

Actually, I'd forgotten about the peppermint oil gel capsules I used to take (around 2003/4 I think). That was back in the days when I was doing the rounds trying to find out what was causing the stomach/bowel pain.

My Dr (at the time) thought I had an ulcer. Then she thought I had appendicitis. And then she sent me for x-rays. And then an ultrasound. And then.........I CHANGED DOCTORS and started my own research & investigations...........

I think a few people mentioned taking Echinacea - apparently, that works better taking it for 1 month & then 1 month off.

I always took vitamin C through the winter only, now I take if all year round & higher doses. I ran out of vitamin C last week & am keen to see if I succumb to any bugs in the near future.

Last winter everyone in my office got bad cold, flu & coughs & NOT me. I was amazed, I used to get every single bug/flu/cold/sore throat going many years ago & couldn't quite believe I was "bug" free for the winter. Good diet helps of course.

Then I kept getting sore throats & eyes, but I suspect that was MCS related not viral.

 

[xlynx]

Hi Victoria,

How did you find peppermint oil? I was thinking about trying it, did it do anything for you?

Thanks,
Jerry

 

[*GG*]

What is the total dose of Vitamin C a person should take in a day? Spread it out throughout the day?

Thanks!

 

[Victoria]

Hi Victoria,

How did you find peppermint oil? I was thinking about trying it, did it do anything for you?

Thanks,
Jerry

Jerry, I have to be honest & say I didn't notice any difference, but apparently most people get a noticeable improvement. Since it's only an over-the-counter item, try a pack & see what you think. If it's going to work for you, you should be able to tell in just a few days. But DO take it about 15 minutes BEFORE a meal. Peppermint is a really good digestive & also has pain-killing properties.

 

[Victoria]

What is the total dose of Vitamin C a person should take in a day? Spread it out throughout the day?

Thanks!

If you are going to take it because you are deficient, take whatever vit C your Dr or Naturapath tells you to.

If you are going to take it for it's immune & heart enhancing properties, take as much as you like (unless you get diarrhoea - common in high doses with some people).

I was taking 3000mg (1500 am & 1500mg pm after meals). I think someone mentioned taking 18000 mg? Could that be right?

I really DO believe it contributed to my good immune system function for the last couple of years. My acupuncturist (Wednesday of this week) said not to take high doses of vitamin C - it causes kidney problems.
She said just have the juice of one lemon in a glass of water daily.

I think she was talking about normal healthy people actually. I take/took vitamin C in a therapeutic way, not because I am deficient.

I've read that you can take vit c as much as your bowels can tolerate. Interesting.

About 25 years ago, I read somewhere that high doses of vit c can give you the symptoms of a cold. Your body expels all the accumulated muccus in your system (sort of like a cold & having to blow your nose or clear your throat all the time).

I've never experienced this.

Perhaps do a search on the forum & see what doses other people were taking. I can't remember which thread it was on.

 

[August59]

for Lyme & co-infections:

Cat's claw tincture alternated with Cumanda
coconut oil

for ME & fibromyalgia:

vit D
Co-enzyme Q10
Acetyl-n-carnitine
& alongside Verapamil prescribed by my M.E. specialist as a calcium channel blocker :
magnesium
calcium
vit c

for cataracts:
Lutein

also trying phyllanthus niruri (which I highly recommend to anyone who wants horrible wind)

I'll remember this one the next time I go the in-laws house(the phyllanthus niruri)!!!