The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

Did Vitamins ever help you get better? (orthomolecular treatment)

Discussion in 'General ME/CFS Discussion' started by amaru7, Mar 30, 2015.

?

Do supplements improve your health much?

  1. Yes, noteworthy improvement

    10 vote(s)
    43.5%
  2. No, I had the same/similar experience to you

    13 vote(s)
    56.5%
  1. amaru7

    amaru7 Senior Member

    Messages:
    221
    Likes:
    108
    Hi,

    I wasted so much money on nutritional supplements like B-Vitamins, Vitamin A, D, E, C, Iodine, Selenium, Chromium, Magnesium, Zinc, ALCAR, Fish Oil, D-Ribose, Boron, Potassium, unrefined Sea salt etc. and must come to conclusion that all results were crappy. I had it from no effect at all over short term improvement to worsening. Hell, I'm even in the VIP program of iHerb (2000$+ ordered)They do sound so promising on paper but didn't translate into real world improvement at all for me.

    Did any of you have the same disappointing experience with nutritional supplements?
     
    Last edited: Mar 30, 2015
  2. Richie

    Richie Senior Member

    Messages:
    119
    Likes:
    69
    As they say in advertising "half the money is wasted, just we don't know which half"!
    Some they help some they don't seem to at all.
     
    jimells likes this.
  3. amaru7

    amaru7 Senior Member

    Messages:
    221
    Likes:
    108
    To me none helped and all the money was wasted. I even have a cupboard full of supplements left.
    If half of the money was wasted and the other half helped, I wouldn't be so bitter about it actually.
     
    SDSue and geraldt52 like this.
  4. Arise

    Arise

    Messages:
    69
    Likes:
    38
    I'm the same, I even had subcutaneous b12 injections that I noticed no difference at all good or bad. It seems they work for some, not for others. A few things such as Candex (enzyme mix) and Vitamin C may have had some effect over a period time, but is difficult for me to say if they were beneficial or not.

    I think the money could be better spent on diet or other treatments (for some people).

    See thread by @Aerose91

    http://forums.phoenixrising.me/index.php?threads/nothing-effects-me-at-all.31802/
     
  5. Valentijn

    Valentijn The Diabolic Logic

    Messages:
    14,020
    Likes:
    43,219
    I've found fish oil to resolve my ME headache. B12 seems to help with pain pretty well. Magnesium takes care of most of the muscle twitching, unless I overuse a muscle. NAC helps me with "wired-but-tired" cognitive problems and resulting sleep issues. And yohimbine keeps my pulse pressure closer to a normal range, so I'm not completely floored by orthostatic intolerance.

    I suppose it depends on what problems you're having, and what sort of reaction you're expecting. The question seems to be phrased poorly as well - there are reactions between "didn't help at all" and "helped me get better".
     
    rosie26, AndyPandy, SOC and 2 others like this.
  6. amaru7

    amaru7 Senior Member

    Messages:
    221
    Likes:
    108
    For details you can post an answer. Through the poll I'm trying to see, wether you and others have had a breakthrough with supplements at the basic fatigue score, which to me is the #1 debilitating symptom of this disease or not.
     
  7. Valentijn

    Valentijn The Diabolic Logic

    Messages:
    14,020
    Likes:
    43,219
    Fatigue is not the core symptom of ME, and certainly not one of the more disabling symptoms.
     
    jimells and Mij like this.
  8. Mij

    Mij Senior Member

    Messages:
    2,201
    Likes:
    4,465
    Magnesium and taurine injections (I was very deficient in Mg)
    Fish Oils with cognitive issues (I tested very low in Omega 3)
    CoQ10 Ubiquinol seems to be effective in post exertion recovery
    B12 (I was deficient in B12)

    I didn't vote in your poll only because my positive experiences were mostly from deficiencies.

    If you see a pattern for supplements that are helpful for most then that could be helpful. Dr. Myhill rec's all the supplements that I am taking.
     
    Valentijn likes this.
  9. amaru7

    amaru7 Senior Member

    Messages:
    221
    Likes:
    108
    It is that's why the disease is also called also chronic fatigue syndrome
     
    TigerLilea likes this.
  10. Valentijn

    Valentijn The Diabolic Logic

    Messages:
    14,020
    Likes:
    43,219
    Some people call it that - most patients and experts do not, and also reject the criteria which use that label and/or focus on fatigue. I suggest reading the ICC, CCC, or SEID descriptions if you want to understand the disease which is the topic of this forum.
     
    SOC and halcyon like this.
  11. amaru7

    amaru7 Senior Member

    Messages:
    221
    Likes:
    108
    @Mij good, I tried the same supplements Dr. Myhill recommends and some doctors I went to who found out deficiencies, but experienced little to no improvement.
     
    justy likes this.
  12. geraldt52

    geraldt52 Senior Member

    Messages:
    379
    Likes:
    1,431
    +1. 30 years and thousands and thousands of dollars worth of supplements, the only thing that has ever shown any lasting beneficial effect, for my wife or myself, is Lysine...and that only in relation to herpes type stuff. Everything else could have just as well been flushed directly down the toilet, without the intermediate step of me swallowing it. I could say the exact same thing about perhaps tens of thousands of dollars worth of pharmaceuticals. The number of times I have spent months experimenting with something, only to finally realize it was making me worse, not better, is excruciating.
     
    SDSue and justy like this.
  13. Richie

    Richie Senior Member

    Messages:
    119
    Likes:
    69
    Very sorry about that. Things get overhyped. There was a Dr Roberts in NW England who said "30% of the people with 30% of the symptoms 30% of the time" for any single type of intervention. She wasn't selling anything.
     
  14. halcyon

    halcyon Senior Member

    Messages:
    2,253
    Likes:
    5,276
    Look, if vitamins, minerals, and cofactors could cure this disease, most of us here would be cured. In general I don't view these things as treatments, though as @Valentijn mentions, people might find certain things that alleviate symptoms, and that's great. I think it's worth the money to try all these things that people find helpful in case it might help you, but if it doesn't don't get hung up on it, just move on. Everyone is different.

    My philosophy for taking supplements for this disease is that I'm supporting my body so it can fight this chronic infection. It's an insurance policy against getting worse or developing deficiencies. I didn't always feel this way, but after I started developing signs of selenium deficiency, I didn't want to wait around and find out what other deficiencies developed.
     
    jimells, NK17, Gingergrrl and 7 others like this.
  15. *GG*

    *GG* Senior Member

    Messages:
    6,074
    Likes:
    4,658
    Concord, NH
    I did a lot of the same things at once, so not sure what has helped me be more functional, feel free to start a conversation with me, and I can go into more detail :)

    Not sure what you would expect Vitamins C and D, I think common ones are not expensive, and are not going to hurt you! Was thinking recently that perhaps I did not come down with shingles because of my consumption of Vitamin C et al. My brother came down with Shingles this winter and a person I was living with, both right around my age, mid-40s!

    Perhaps you are just venting, and frustrated, I can relate to that! I'm working on getting my disability, so I am frustrated a lot lately!!

    GG

    PS if you have a lot of good unopened stuff, I will pay you to ship it to my house.
     
    Valentijn likes this.
  16. *GG*

    *GG* Senior Member

    Messages:
    6,074
    Likes:
    4,658
    Concord, NH
    Very well said, I agree wholeheartedly :)

    GG
     
  17. ahmo

    ahmo Senior Member

    Messages:
    4,317
    Likes:
    6,423
    Northcoast NSW, Australia
    Vitamins and minerals have returned me to the land of the living. My nervous system has calmed, my life has returned.
     
    WoolPippi and Alea Ishikawa like this.
  18. amaru7

    amaru7 Senior Member

    Messages:
    221
    Likes:
    108
    @ahmo good to hear, which ones did you take that made such a difference in you health?
     
    Last edited: Mar 30, 2015
  19. brenda

    brenda Senior Member

    Messages:
    1,922
    Likes:
    1,424
    UK
    Supplements made no difference to me or made me worse, until a drastic change in diet quitting gluten dairy sugar and caffeine to mention a few. Then, and not before, supplements ARE changing things.

    You can't expect them to do much when you are filling your bodies with substances that cause them a lot of work.
     
  20. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

    Messages:
    721
    Likes:
    4,221
    Canada
    I think my experience is also somewhere between the two extremes of that question.
    The supplements for outright deficiencies that I had/have made a difference to varying degrees.

    Though since symptoms wax and wane (at least for me) it is also always a bit tricky to say for sure that something was effective.
     
    WoolPippi and Valentijn like this.

See more popular forum discussions.

Share This Page