My new attitude toward supplements

Discussion in 'Fibromyalgia Main Forum' started by Forebearance, Jun 20, 2006.

  1. Forebearance

    Forebearance Member

    Okay, everyone, I am rebelling against all the supplements that are supposed to be good for me that actually make me feel worse.

    Each one comes with the promise that it will make me feel worse for a while, and then much better or cured.

    It hasn't worked out that way for me. I've never gotten to the good part with any of them. And meanwhile, I've lost what little quality of life I have while I'm Herxing or feeling lousy.

    So from now on, I'm only going to take supplements that actually make me feel BETTER. (If you want to know what those are for me, they're in my profile.)

    I firmly believe that the things that are going to heal me from CFIDS are sleep and exercise. Anything that makes it harder for me to sleep or exercise is counter-productive.

    I liked Dr. Weil's book "Spontaneous Healing", in which he encourages people to follow their gut instincts about what will heal them.

    This is my gut instinct. I have a fabulous immune system and a fabulous body. I rarely got sick before I got CFIDS. I have a feeling that if I just get out of my body's way, it will heal itself.

    So that's my manifesto. It feels good to declare it to somebody! Thank you for listening.

    [This Message was Edited on 06/20/2006]
  2. musikmaker

    musikmaker New Member

    I have been trying different supplements and so far, no real results. I think I have to agree that we need to listen to our bodies to figure out what might help.

    Your positive manifesto, is a great start.
  3. bioman85

    bioman85 New Member

    Curious - what supplements did you try and for how long?
  4. Marta608

    Marta608 Member

    Good for you! I'm not sure why you'd do anything else.

    Please read The Paleo Diet. I'm getting boring about this food thing, I know, but it makes so much sense and we tend to get it all wrong and it can make such a difference. I'm not suggesting you replace supplements that make you sick with a diet you can't stand. This is very healthy and very do-able.

  5. Forebearance

    Forebearance Member

    I appreciate it.

    Good luck with your experiments, Musikmaker. I understand how frustrating it can be. Different things seem to be helpful for different people.

    Marta, I guess the reason I tried supplements that made me feel worse was either greed -- wanting to get better faster -- or desperation -- being sick and tired of being sick and tired.

    Hey, I was diagnosed in the same place you were. Did Dr. Demitrack diagnose you, or was he gone by then?

  6. LouiseK

    LouiseK New Member


    I have been going through one of those intense research phases lately (you know the desperate, up late into the night hoping to find a magic bullet on the internet phases) and the list of supplements you mention on your profile look very much like the list I have just compiled for myself to try.

    Would you mind sharing dosages or brand names that you are using?

    I just got the COQ10 today actually . . .

    Thank you in advance for the insights!

  7. hugs4evry1

    hugs4evry1 New Member

    I like your attitude and would just like to add one more thing.

    For those of you who've heard it already go ahead and groan cause I'm on my kick again but.....

    The Fibro Complete with Malic Acid that they sell here at Pro Health has given me so much of my life back it's amazing.

    I've posted on this previously but I wish everyone would start with a VERY good multi vitamin and just throw away the store stuff.

    I too have gone herbal/supplements mostly because my husband and caretaker is now ill and no one's doing anything to help him.

    So far I've spent a ton of money (on supps for both of us, mostly him), but I haven't felt this good in 2 years!!!!

    Hugs all,

    Nancy B.
  8. bpmwriter

    bpmwriter New Member

    i'm totally with you! not only do i only take supplements that make me feel good, but some of them i only take as needed. amino acids are great like that; lysine for a couple days for cold sores; dlpa for a couple days for pain; methionine for histamine symptoms, then i STOP! it's all about body wisdom and you shouldn't have to wreck your sleep to improve your energy levels (for instance). there's cause and effect relationship to everything we put in our bodies.

  9. NyroFan

    NyroFan New Member


    I do the same thing. I experiment with supplements that I feel will help. I will be adding in selinium this month.
    Other that that I have about five others.

    Hey-if it feels good, it can not be wrong!

  10. suz9601

    suz9601 Member

    What happened to the d ribose? ARe you still on that one? I started almost a week ago at 2 times a day and so far notice no improvment yet. Just wondered if it quit working for you.

    Take care,
  11. Forebearance

    Forebearance Member

    Hey, Nancy B.! I'm so glad that you've found something that helps you so much.

    Donnaeil, that is wonderful that you are able to do volunteer work! I'm glad you're feeling better.

    Eddie, that's a very interesting point about not taking something constantly. I tend to get into a rut and stop paying attention to whether something is actually still helping.

    I notice that if I start to forget to take it, it must not be doing much for me.

    It's cool that you're so in touch with your body. I think that is the key to getting well.

    I just started experimenting with amino acids beyond L-glutamine. They're interesting critters.

    Nyrofan, I love selenium! I hope it works for you!

    You are all so cool.

    Okay, LouiseK, I can tell you more about my short list of favorite supplements. There's no guarantee any of them will help you, but if any do, I'd be thrilled.

    The first one I discovered, from reading a book, was calcium lactate. I started with 750 mgs of NOW calcium lactate during my first year of illness.

    I gradually increased the dose as needed over the years. At present I take 2500 mg a day, which I understand is the most anyone should take. I spread it out over five doses, because the stomach can only absorb 500 mg at a time.

    The brand seems to make a difference with some supplements, and not with others. For me, this brand of calcium lactate works better than others. It allows me to sleep well.

    For other minerals, I take Magnesium Asporotate, Potassium Asporotate, Zinc Asporotate, Selenium, and Chromium Piccolinate. Those fancy forms of them are the most easily absorbable forms. The easier they are to absorb, the better.

    I just take one capsule of each, which is usually one daily recommended dose.

    For hormones, I take very small amounts of DHEA, phytoestrogens, and progesterone cream. And then larger amounts of Thytrophin made by Standard Process and my prescription Armour thyroid. I'm really sensitive to hormones, so it doesn't take much for me.

    If I were a guy, I might take testosterone, but for me the DHEA covers that base. I used to take a small amount of Cortef, which is a prescription, but now that I'm getting better I find I need to stop it.

    Milk thistle has been really helpful. It keeps my liver function blood tests normal, which makes my doctor happy. I take 175 mg a day.

    I take Enzymatic Therapy's Eskimo Oil, which is the only fish oil I've found that doesn't give me fish burps. I take nine little capsules a day, which is 4.5g. And I take 3.9 g of evening primrose oil.

    I take 100mg Co Q-10. I like the chocolate chewable made by Enzymatic Therapy. Just because it's fun to have a chocolate vitamin. But I don't think brand matters in this case.

    I'm still experimenting with different amounts of L-glutamine.


    I take a few other things that are supposed to be good for me, but are neutral in effect. Like, a greens tablet, glucosamine sulfate, digestive enzymes, caprylic acid. I take them on faith. But the enzymes do treat my seasonal allergy well. And I'm still trying different doses of the caprylic acid.

    In the last couple months I've been experimenting with Kelp, which has been great for my thyroid, and Corvalen, which helped at first but has been tapering off in its effect.

    It seems best to experiment with one thing at a time, so one can tell if it helps or not in a somewhat controlled environment. But I admit I sometimes break this rule because of being in a hurry and am trying a couple different things close together.

    Good luck, Louise! I'd love to hear if you find anything that helps you.


    [This Message was Edited on 06/21/2006]
  12. Forebearance

    Forebearance Member

    Hi, Suz!

    You were posting right as I was composing!

    Yes, I'm still taking the D-ribose (Corvalen). It's been around three months now.

    It felt really good for the first three weeks. I was taking a scoop twice a day, also. I could really feel a difference in my stamina. I was able to walk farther.

    Now I can't feel any major boost from it. But if I stop taking it, I feel worse! Isn't that odd? That sometimes happens to me.

    AND, I can still walk longer distances than I could before I started taking it. So what I think is happening is that it is helping me very, very gradually.

    So I'll probably give it a few more months' trial before I decide if I'm going to declare it helpful and put it on my list of favorites.

    At least I think it's one of those things that can't hurt you. The worst it could probably do is nothing.

    I'm thinking about trying three scoops a day. Have you thought about trying that?

    I read your bio and I'm sorry you're feeling so lousy. It sounds like you might be similar to me in that hormones might make a big difference for you. I know BC pills would mess me up, big time.

  13. suz9601

    suz9601 Member

    I am like to also in that I am sensitive to a lot of stuff anymore. I remember DAneen telling me when you started Samento you could only tolerate a small flake out of the capsule, that is how I am w/so many supplements/meds. This sensitivity makes it tough to find something to also wastes a lot of money on stuff I buy but cant take.

    I have thought about 3 scoops.It hasn't even been a full week for me but about week 2 if I dont notice anything, I will raise the dose and try it.

    I am messing w/hormones right now..I have had a migraine for about 14 days from estrogen replacement...not going well so far, but I will keep trying.

    Hang in there,
  14. bpmwriter

    bpmwriter New Member

    i've been experimenting with amino acids on this end too. actually, i'm seeing so much benefit that i'm gearing up to post about my new theory. in short, i'm starting to believe that my symptoms are caused by the inability of my body to synthesize protein into amino acids. if you look at each of the essential amino acids (the ones we must obtain from food and therefore have to be broken down by the body), deficiencies could account for a majority of the symptoms found in cfs and fibro. i'm lifting weights for the first time in two years, and sleeping well too! fatigue continues to be a huge problem, but i think that's mostly due to the lexapro i take, not part of the metabolic problem. in any case, i'd be interested to know what sort of enzymes you take, dosage, etc. i believe enzymes can help fix the broken protein cycle mentioned above. i also have seasonal allergies and have never tried enzymes for that purpose.

  15. Forebearance

    Forebearance Member

    Wow, nice to hear right back from you guys!

    Yeah, Suz, that was correct about me barely being able to tolerate any Samento, (except I was taking Saventero, but same thing). I can sympathize with being so sensitive to supplements.

    Maybe that's why I don't even take drugs. I hope your hormone stuff will turn out well. I learned a lot from Dr. Teitelbaum's books about the importance of bioidentical hormones and the synergistic effect they have when you take them all together. I had to take all the hormones I could find at once to lift my endocrine system up and feel better.

    Which can take a while to achieve when you have to add them one at a time and figure out the dose for each one.

    Your migraine sounds horrible! I hope it gets better. Regular estrogen was too strong for me. That's why I take phytoestrogens. They're weaker.

    Oh, sure, I see what you mean about the D-ribose. You've only just started taking it.


    Eddi(e), that's terrific that you're lifting weights! I agree with your theory. It's been around for a quite a while, the idea that CFS patients can't break nutrients down into their bioactive components because we're lacking in enzymes. That's also why evening primrose oil is good for us: because it contains a more useful form of Omega 6 EFA.

    I've been taking store brand bromelain (pineapple enzymes) for my allergies for years.

    Then I went to have one of those wacky looking blood analysis things done at the health food store. The blood guy basically said "the more enzymes, the better", for me. I didn't tell him I had CFIDS. This was just from looking at my blood.

    So I've been taking mainly EnzyPerfect, 1 to 3 capsules a day, as I remember to take them. But I've also tried different brands and it seems like any high quality brand is similar.

    They give me the runs if I take a lot of them. But for now, I'm believing that they are good for me. It's been about nine months that I've been taking them.

    You've encouraged me to try more amino acids! A few other people on here have been having great results with them, also. Maybe I should go shop in the body builder section of the health food store.

  16. LouiseK

    LouiseK New Member

    Thank you so very much for your thoughtful email. I have printed it out and it will be invaluable for me in setting up a regime, I think.

    I have $600 worth of supplements in a bag that I bought a few months ago . . .It was like forty pills a day, my stomach couldn't handle it all and I became so confused and overwhelmed . . .I*'m sure you know what I mean.

    So now I am back to basics and making a list of things I want to add in the order that seems most important based on my own problems.

    Anyway, many thanks for all the effort.

    Best wishes,

  17. Forebearance

    Forebearance Member

    I understand what you mean about the bag of pills.

    I hope it will be easier for you if you take it one thing at a time. It's taken me years to figure out a good routine.

    But it's true that it takes a lot of discipline to take as many supplements as I do. When people ask me what I do all day, I feel like saying "I remember to take pills!" Between that and remembering to wear my retainer, it's a full-time job.


    Best wishes back!
  18. ellikers

    ellikers New Member

    RIGHT ON! I just want to commend your for following your intution and gut instinct on what is right for you. Everything I do in my recovery I do because it feels right, and it feels good.

    I think our intuition is generally undervalued in society.
  19. Forebearance

    Forebearance Member



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