Health Supplements: What Risks are Worth Taking to Get Better?

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Sep 26, 2006.

  1. Slayadragon

    Slayadragon New Member

    This is a topic that I think is well worth a discussion on this board.

    Most of the people on this board are very sick. The upside to them for getting better is very high.

    On the other hand, most remedies (prescription, herbs, vitamins, whatever) have some risks too.

    Anyone who does something to try to get better (or any doctor who prescribes treatment to someone to help them get better) has the responsibility to make sure that they find as much information as they can about it before they proceed.

    However, I think it's important to keep in mind that there is very little chance that a CFS sufferer is going to improve unless s/he takes some risks with regard to trying things that could be helpful.

    (If anyone knows someone with CFS--not fibro--who has spontaneously gotten better without taking or doing anything that could have had some sort of adverse side effects, please let me know.)

    Therefore, we all need to consider how much risk we're willing to take in order to try to get better.

    If a doctor prescribes a drug, know that there is going to be some risk of having some sort of side effect. _All_ prescription drugs have side effects for some people, regardless of what else you're taking. And it's unlikely that your doctor will be able to predict in advance whether you're the person who's going to get that side effect.

    If you're lucky enough to have a doctor you trust and don't want to do your own research, go ahead and try the drug or treatment. If you end up with side effects, let him or her know.

    If you don't trust the doctor, read up on the drug or treatment first. Talk to people about it. Most doctors know nothing about CFS, and so it's your responsibility to find out about whether the treatment seems to make sense for you.

    It sucks that most MD's don't know anything about CFS and frequently do things that cause us harm (in addition to not providing help), but that's life. It sucks to have CFS too.

    There are lots of potential treatments for CFS out there that have not been tested for efficacy. Some people say they find them helpful. Some people do not find them helpful.

    Some of these "natural" treatments, when scientifically tested, do seem to be helpful. (Amongst them are St. Johns' Wort for depression and the Chinese herb bupleurum for liver disease.) Some (like echinacea) do not seem to be helpful, although (as is always the case in scientific studies) there can continue to be controversy with regard to whether the test was done right.

    All non-medically-prescribed things that we might do to try to help ourselves to get better from have some risks associated with them. This includes things like eating.....look at all of Carla's food sensitivities, for example. (Not to mention the chemicals on the foods we eat and the fact that most of the food in the U.S. is genetically engineered in some way.) It also includes drinking water.....a high percentage of water in this country (including bottled water) is contaminated in ways that we know about, and undoubtedly in ways that we don't. Considering the amount of pollutants and allergens in our air, breathing is another risky behavior.

    Nutritional supplements of all kinds also have risks. Some have risks that unwanted side effects or interactions with other drugs will occur. All have risks that contamination has occurred in the manufacturing process. (Spinach has that same risk, unfortunately. I like spinach.)

    All have risks that we will spend money on them and come up with no positive benefits. Again, though, considering how little the medical community knows about CFS, there's that risk every time we go to see any doctor or get any prescription filled.

    Nutritional supplements have side effects. Except in rare cases where they react with prescription drugs, these side effects are not (to anyone's knowledge) deadly. Rarely if ever are they both serious and irreversible. If they were deadly or irreversibly serious, the FDA (and places like the Mayo Clinic) would be sure that we knew about it.

    The one dietary supplement that has caused deaths during the past 20 years was the Chinese herb ephedra (used by Chinese doctors in small quantities as a decongestant). The FDA issued warnings for years about it, after a few disreputable companies decided to promote it in high dosages and in combination with other drugs for weight loss and/or a replacement for steroids. Anyone who googled the name of that drug would immediately have known of its danger. It now has been banned by the FDA.

    The only other nutritional supplement (to my knowledge) that has caused any deaths (apart from a few prescription drug interactions) was an amino acid called l-tryptophan. These deaths were caused by a bad batch. Still, this amino acid is not available in the U.S., 15 years later. (Those fast-food restaurants who have had food poisoning outbreaks are still in business, however.)

    The FDA keeps very close watch over this area. The previous head would have liked to have banned nearly all nutritional supplements (with exceptions along the lines of RDA's of vitamins). Congress kept the agency from doing this. The FDA was unhappy with the decision, and it thus monitors this area closely in order to see if it can make a case that any supplements are dangerous enough to get removed from the shelves on an individual basis. Thus far, it has not found any except for the two mentioned above.

    Many CFS sufferers have trudged from doctor to doctor (dozens in some cases) without any help. If you're still feeling bad after exhausting your medical resources, you have two choices---accept your condition (and if you like pray....that probably doesn't have any negative effect) or see if there are things outside what your doctor has prescribed that might help.

    If you're risk-averse and what you fear most is getting worse, even for a moment, the first course would seem wisest.

    If you're more risk-tolerant and what you fear most is never getting any better, exploring other treatments seems like a reasonable step.

    If you're going to go this route, though, then you have to take responsibility for the consequences of your actions. If you don't read up on the treatments that you're pursuing, then the likelihood that you might experience an adverse effect goes up. (The fact that the adverse effect that you might experience is probably going to be less than the one you might endure by eating the wrong bag of spinach is not an excuse not to explore.)

    Theoretically, it is all well and good to say, "Check with your doctor before taking any supplements or doing anything else." Practically, most doctors know nothing about supplements (because they're too busy just getting through the day to learn about drugs much less anything else), and will either say "Oh, well, ok" or (if they're concerned about liability), "Don't do that, supplements can be bad for you." Neither response is that useful. By all means, tell your doctors about the supplements that you use (I do), but don't expect any useful information as a result. You're only going to get that by doing research yourself. (If you have a doctor that does know something about this area, count yourself lucky and get as much information as you can from him/her.)

    If you're not using an M.D. (who has been granted by the state responsibility to take care of your health for you) to make all decisions about health-related issues for you, then it is your responsibility to find out information about the effects of any treatments you explore yourself. Accept ideas from other people, get information about their experiences, but don't go forward until you're comfortable that you have some knowledge about it. With the Internet available, we don't have the exccuse that it's too difficult to get information any more.

    If you're on a prescription drug and are considering pursuing any course of activitity outside that drug, you should have some information about that drug. The most important thing to know is whether there are interaction effects with other drugs. If so, there may be interactions with nutritional supplements as well. For instance, Xanax and alcohol can be a deadly (or coma-inducing) combination. Taking kava-kava at the same time you take Xanax is equally dangerous. Certainly, anyone given blood-thinning drugs should receive strong warnings about its interactions with drugs, and so shouldn't be adding anything (like herbs) to it. The Mayo Clinic guide to interactions is a good starting place with regard to exploring this issue.

    Listing on this board nutritional supplements--or medications--that are thought to be helpful for a particular condition is not the same as telling the person reading the post to take them. If someone (including an M.D.) is not fully aware of your medical history, then they are not allowed to give you a recommendation about what you should do for your condition. They only are allowed to provide information that might be useful to you. If someone knows everything about your medical history, they may be in a better position to make a real recommendation. This does not mean you should follow that recommendation, regardless of who makes it (and even if that person is an M.D.), however.

    As with anything else in life, nutritional supplements need to be used with care. If you're the sort of person who believes that taking some sort of risk in order to try to get better is worth it, that's your decision, not anyone else's. If I decided to buy a power saw, I certainly would read the instructions and ask my neighbor if he had any suggestions for me before I started using it. It's only responsible to do the same thing with regard to the decisions we make about our health.
    [This Message was Edited on 09/26/2006]
    [This Message was Edited on 09/26/2006]
    [This Message was Edited on 09/26/2006]
    [This Message was Edited on 09/26/2006]
  2. Slayadragon

    Slayadragon New Member

  3. Slayadragon

    Slayadragon New Member

  4. vickiw

    vickiw Member

    some excellent points here.

    I've spent plenty of $$$ on supplements and haven't been helped by them one iota. But I feel that at least I'm trying something. I look up the pros and cons of each treatment. Then I give each one a fair chance and if, over several months, there's no improvement, I cross it off my list and move on. To me, that's better than doing nothing at all.
  5. suzetal

    suzetal New Member

    Very good advice.I for one always do my research.I also always check with my pharmacist to make sure there are no interactions between supplements and my medications.

    Most doctors DO NOT know if A mixes well with B.So always do your own research to make sure your safe.I want to get better not kill myself.

    Sue
  6. cherylsue

    cherylsue Member

    Nicely written. I see from your bio that you are a patient of Dr. Papernik's, too. I know he likes to prescribe RX's, and I've tried a bunch, but I react negatively to most of them. The only one I can take is
    Rozerem which helps a smidgen with sleep.

    Have you taken any RX's that have helped you? Dr. P just prescribed me Prozac, but I think I'll try St. John's Wort instead which supposedly works just as well with fewer side effects.

    I just have CFS, the remitting/relapsing kind. I've been in a severe relapse since July. I'm very discouraged and somewhat depressed at this time.

    Thanks for you input.

    CherylSue



  7. cherylsue

    cherylsue Member

  8. deliarose

    deliarose New Member

    I saw Dr. Papernik for a long time.. but he couldn't help me.
    I just recently consulted Dr. Joe Brewer in Kansas City, Mo, and started on Transfer Factor.

    Early days, but it feels like i'm on the right track and making progress.

    Have you considered the stealth infection theory ?

    You might want to give anti0virals or TFs a try... Dr Keith Berndtson in Chicago treats CFS this way....

    best

    Delia
  9. Slayadragon

    Slayadragon New Member

    Bumping so that I don't forget to respond soon....
  10. cherylsue

    cherylsue Member

    I heard of Dr. Berndtsten, but haven't seen him. I looked into other doctors before Dr. Papernik. A Dr. Dachman tried to treat me for fibro which I don't have. (One treatment fits all) I didn't care for his support staff, either. Dr. Papernik was the most creditable CFS doctor I could find.

    Dr. P likes to prescribe meds which, unfortunately, I am very sensitive to. Dr. P did do two sleep studies and found I had a low ferritin level which no other doctor checked for.

    Dr. Papernik is also on the Chronic Fatigue Advisory Committee for the U.S. Dept. of Health and Human Services.
    He is aware of the latest developments. Ampligen is undergoing FDA approval and may be available in 3-5 years. It has shown remarkable success with CFS cases.

    I've picked up a few tips from Dr. Teitelbaum and have actually met him at a book signing/lecture. I thought he was optimistic and sincere. I found his tips on D-Mannose for UTI's and ProBoost for infections most helpful. His vitamin powder tastes awful and his sleep remedy doesn't work, however.

    I would go to an FFC if there was one closer. Instead, I try to treat as closely as I can to what they are doing, except for the thyroid/cortef thing which I don't believe in for myself. I try to stay away from sweets, chocolate, and nuts.

    I've also found some tips on this board. Shared experiences are most valuable. So, a little of this, a little of that, and I have worked out my own plan for recovery. I've been into remission twice, but I am currently in an awful relapse.

    Transfer factors have never appealed to me because of the terrible herxing. My credo has always been "do no harm." If I feel worse on something, I will try it again in another week or two. If I still feel badly, out it goes.

    Just wanted to share my experiences and hope it helps someone else.

    CherylSue

  11. cherylsue

    cherylsue Member

    Your post was very informative. I tried to order the Pure Encapsulations St. John's Wort, but my order was cancelled. Where do you order yours?

    Dr. P prescribed Symbatyx (sp?) I'm not bipolar. Just CFS, but depressed while I'm in this relapse. If I couldn't handle the Paxil and Zoloft, how can I handle high dosage Prozac? St. John's Wort has helped a bit in the past, so I'm trying it again. Are you still on it? How long can one remain on St. John's Wort? As long as it is needed?

    I do better with herbs and supplements than with RX. Very sensitive to meds, even more so with CFS.

    Thanks again for your input.

    CherylSue
  12. janyde

    janyde New Member

    I take all kinds of supplements. I'm not sure if they help or not or if it's just good for you. does anyone know how much of one supplement is enough for fm in general.
    the fda doesn't regulate these. Doctor's push meds.
    I'm med sensitive. Any input?

    thanks
    Jan
  13. Slayadragon

    Slayadragon New Member

    The Pure Encapsulations site is for doctors and other health practitioners to resell. Probably most "expensive" health food store brands would be okay. I wouldn't bother with ones from the drug store. GNC seems chancey.

    Mostly make sure that it says that the brand is standardized for both hypericin and hyperforin. some people now say that it's the hyperforin that works. Good brands cover their bases and standardize for both.

    I've never seen any time limits for St. Johns' Wort. I've been on it for maybe 9 years.

    It's hard to figure out what to take for CFS and what's optional. The books I mention in my bio get into that. I tend to think you need a base of a good multivitamin, a good dose of B, a lot of C, a good deal of magnesium (with some calcium to balance), and some Coenzyme Q10 to start out with. There may be other things I'm forgetting. Anyway, after you've got a solid base of vitamins, you can add and subtract other things and see if they make a difference.

    The following is not a recommendation. It is for informational purposes only.

    There are two amino acids that many people believe are useful in combatting depression. They are:

    5HTP. Helps to create more serotonin (and thus may have Prozac-like benefits). Make sure you have enough B vitamins (I think especially B6) to help it work.

    DLPA. This helps to create dopamine, phenylethyalanine (the chemical your body makes in abundance when "in love" and is supposed to make all the time), and to some extent controls pain.


    I take St. John's Wort and DLPA, along with Lamictal. Usually my moods are pretty good. This week is an exception. I don't know why.

    I've not had a lot response from 5HTP (at least since i've been on this other stuff), but a few other people I know (especially those who seem to be very anxious and oversensitive to stimuli) swear by it.
  14. Slayadragon

    Slayadragon New Member

    I think the major thing to know about the FDA not regulating herbs etc. is that they have not all been rigorously scientifically tested. They have not been shown (to the FDA's satisfaction) that they work. It costs a lot of money to do this kind of testing. If somebody doesn't have a patient on a drug, theey're not goin g to spend it.

    Herbs etc. are not controlled by the government to make sure they have in them what they promise. For some herbs especially (like St. Johns Wort) it's worth it to make sure you get good brands, therefore. I tend to think it's worth it for amino acids too.

    I do agree with Nanjee that interactions beween herbs and prescription drugs are a potential major (occasionally deadly) problem. If someone is already taking prescription drugs, making sure there's not an interaction with othere substances is a good idea.
  15. cherylsue

    cherylsue Member

    I have Nature's Resource St. John's Wort, but the hyperforin is not listed. I guess I'll take what I can.

    I'm just frustrated and depressed that I've had this third episode in 6 years, and I'm housebound and not working. My medical leave runs out mid-November. I'm scared of living a lifetime like this.

    CherylSue
  16. deliarose

    deliarose New Member

    any reason why Guyer gave up on the TFs?

    What is his approach these days? Was it him that encouraged you to try supplementing with hormones?

    Tnx

    Delia
  17. yodasmom

    yodasmom New Member

    Wish I could list many of the supplements I have tried but am having a bad few days. I think it is from yogurt 3 days ago! Sometimes I just want to give up on everything! I have bad herx to a lot of things, particularly herbs, even the smallest dose. I do tolerate COQ10(100mgs), DHEA (10 only), zinc, small doses of magn, calium citrate, folic acid (compounded dose), inositol. Was taking echinachea rotating basis but found my frequent colds cleared when I stopped it! strange, then I read this can aggravate CFS (what doesn't?). I am now trying Dr. Tatelbaums sleep herb( helping?) and dot doses of his powder. I saw him in a lecture and bought this stuff and his book. There a few other things of his ideas i will get at some point. No Vit C anymore as I read it aggravates IC which is flaming right now. transfer factor was an immediate no no! definitely worse. topugh being sensitive to everything...had cfs for 30 years so always trying something. Reading a book at the beach is the best for me on a nice day but being in Boston I am done withthat until next summer. Good to share ideas. I have seen lots of natural docs and watched many ideas come and go. Always hoping. Trying biofeedback next as this was RX by Dr. Rothfeld here in the Boston area. Don't waste your money on poor quality products.
    [This Message was Edited on 09/29/2006]
  18. Slayadragon

    Slayadragon New Member

    I don't think Guyer's given up on Transfer Factor, exactly. It's just that the first time he diagnosed me with having some weird viruses, he was adamant that Transfer Factor would fix it. In our most recent conversation about viruses, he talked about anti-viral medications, not Transfer Factor. Maybe that's just because I didn't respond to the Transfer Factor (even though I bought an _extremely_ expensive and supposedly reputable kind), and also because I brought up the idea of antivirals (as a result of reading about a recent conference in Spain or something where one of the researchers said he had had success with them.)

    He might be recommending Transfer Factor as much as ever to other patients for all I know. It's just that several years ago he seemed to think that TF was a magic bullet for those little viruses, and no longer seems to have that belief. Since few things are a magic bullet for everyone (I can give you one or two exceptions) with a particular problem, I'm hardly surprised.....
    [This Message was Edited on 09/29/2006]
  19. Slayadragon

    Slayadragon New Member

    Hormones were the first thing that did anything whatsoever for me when I first got sick about 11 years. I started with DHEA (recommended by an osteopath who, unfortunately, proved himself extremely problematic in other ways). Then for a while I consulted with a hormone doctor in California, who worked on progesterone, testosterone and maybe one other. Then over time, more got added. Some were Guyer's ideas. I responded so well to hormones that we kept adding more. So hormones are definitely not new for him, and he probably doesn't recommend them to everyone. Just to me, since that seems to be a big thing for me. (I wish that Neuroendocrineimmune Disorder name hadn't been discarded, since it describes my illness to a T. If I could get the hormone, virus/bacteria/yeast/autoimmune, and "agitated exhaustion" all under control at the same time, I think I'd be pretty much well. It's hard, though. But I keep trying....
  20. Slayadragon

    Slayadragon New Member

    I absolutely agree that one medication (including supplements) is the right way to go, and that Teitelbaum's strategy of "do everything at once" is not quite right, especially for people already on prescription drugs. It may be true that some of the things he recommends don't work until other things are taken care of, and so maybe if some things don't seem to help but don't hurt, a case could be made to keep taking them for a while anyway. (This especially goes for just vitamins,, which may be necessary but not sufficient for good health.)

    The more I hear from this board, the more it seems that looking up interactions is a very good idea. Doctors don't usually know what these are, unfortunately. Doing some research on the Internet on your own doesn't take very long, and seems well worth the trouble.

    In any case, if a medication or other treatment isn't doing anything and is expensive, that may prevent people from pursuing other things that could help them get better. If something's expensive and not working after a while, I'd be inclined to omit it and try other things to get better. Someones once my health has improved in general, things that didn't work at first do have a noticeable incremental effect.

    Pdoc means "psychopharmacologist"? Those drugs may be impossible to get off of, of course. Mild mood symptoms seem manageable through "alternative" medicines, but not major ones. If that's what you're talking about, of course.[This Message was Edited on 10/01/2006]