Supplements Too Strong? = X detoxing?

Discussion in 'Fibromyalgia Main Forum' started by RitaF, Dec 5, 2012.

  1. RitaF

    RitaF Member

    hi all, i posted this several days ago, now editing.

    i certainly do have cfs as well as fms. also hypertension. thaks to all of you for your input.

    also i am like at least 1 of you in that if i take a break on some things, i get a good response when re-introducing it.

    also i'm planning to see dr. battle in houston on 1/14/13. watch for my posts.

    original post:in my last years of living w/ fms I feel like I'm getting too sensitive to even simple supplements like vitamin C. of course many others also seem to = feeling much worse (more pain, fatigue, fog, etc.)

    does anyone have any insight on this?

    might it relate to my age? 73.

    thanks for any help. rita
    [This Message was Edited on 12/08/2012]
  2. LadyCarol

    LadyCarol Member

    You are not alone. We are finding huge numbers of people with CFS/ME and/or FM are hypersensitive to manmade supplements; also age can be a contributing factor. Many people are wrongly being given advice to try such and such supplement in the hope it may help them, often the advice given from people who are ignorant of how CFS/ME affects the body and/or have no experience of hypersensitive themselves.

    Essentially the body of a person with CFS/ME often becomes hypersensitive to even tiny concentrations of supplements, medications, as well as other substances. We start by detoxing the person by removing all supplements a person is taking; medications are only prescribed for anything that is absolutely necessary. This provides us with a clean baseline to work from and gives the body a chance to rest from the bombardment of tablets, capsules etc. whatever their origin. We focus on each issue at a time, for example, if the thyroid is an issue we address it, if sleep is an issue we address that and so on. We address a person’s diet and encourage a program of whole foods; these contain all the nutrients a person needs. If food sensitivities are an issue we address those.

    Again and again we are finding people with CFS/ME are remaining ill as a result of them taking supplements, when we bring them off the supplements the process of improvement begins and continues. Too often people think by popping something into their mouth their health will improve, what they often don't realise is the very opposite happens. In fact many people have become so badly addicted to taking supplements they simply believe they cannot live without them, and they are often in denial they have such a problem. As such we have to treat them as we would for someone with a drug addiction problem and help them to wean off them and stop taking them.
  3. sunflowergirl

    sunflowergirl Well-Known Member

    After a week of taking a double dose (per her) I'm suffering from stomach cramping and gas. I called her today and she said it is a detox and that maybe I need to ease into taking it.

    After reading the above, I think I might stop all my supplements until I go back to the doctor in l0 days. Then she can advise me after she sees my lab results. By the way, I'm 68 and have suffered from FM/CFS for at least l5 plus years.

    Lady Carol. You're very knowledgable......what is your background?
  4. harrysmom

    harrysmom Member

    Finally.....a post that makes perfect sense to me in regard to all the supplement talk/suggestions. What you describe is me to a T. I have had CFS for 16 years....I am 65. I have found that I can tolerate only tiny amounts of the B vitamins....anything larger gives me hives and digestive problems. I can tolerate NO vitamin C. I no longer take a multiple vitamin. I was low in D so for about a year I took D, got my level up, and now can only tolerate D maybe once or twice a week.

    Jam....I have said this before about you and your supplement advice. First of all, you do not have CFS and therefore do not deal with the sensitivity issues of those who do. You have pain....I do not. Only some aching after doing too much. The amount of supplements you take is mind boggling and I marvel at your body's digestive capacity when dealing with all that stuff. While I am happy that you feel you are helped by taking all those supplements, sometimes in large doses, it is not the automatic answer for people who truly have CFS. I think in the beginning of our illnesses, if we are really worn down and depleted, supplementation with some basic things time goes on it becomes overload and just further exacerbates our sensitivity problems.

    I tried grapeseed extract on several occasions over the made me worse. Lately I have found by going for days without taking anything and then taking something, for instance, a small amount of B Complex or extra B-12 when I feel worn down I feel much better than consistently dosing with all these things on a daily basis.

    This is only my experience, of course, but it would appear that it is also the case for others out there who truly deal with CFS and its sensitivity/toxic build up issues.

  5. SherylS

    SherylS Member

    What you are saying, Harrysmom. I have the exact same problems with supplements. I can't seem to tolerate anything! I can take D one day then have to wait several before taking it again. Same with B vitamins...everything for that matter. And I can't take C or Grapeseed extract at all. Exasperating!!
  6. SherylS

    SherylS Member

    All I get from drugs are side effects. Probiotics and digestive enzymes also can only be taken occasionally. When I say these things make me sick, I don't mean stomach problems. My stomach doesn't bother me. It's just the all-over sick flu- feeling that is very common for CFS. I end up in bed for a day or two. Over and over and over
  7. harrysmom

    harrysmom Member

    I know that we do not represent everyone with CFS as far as our drug intolerance or sensitivities, but I will tell you that that is one of my biggest symptoms and if I'm not careful it can keep me in a constant state of upset or fighting back from a bad reaction.

    I cannot tolerate one tiny bit of vitamin C in a supplement and can only drink a few sips of a juice containing Vitamin C. I get terrible diarrhea almost immediately or at least within 12 hours. I've been like this for years now.

    If I take too much B or D I get hives, heartburn, and sometimes nausea and stomach cramps. And here is yet another kicker....I have tried different digestive enzyme product and probiotics and all they do is make me feel very strange and give me diarrhea, leaving me weaker and more fatigued than before. It's horrible. Sometimes the supplements make me itch.

    I know that there are people on this site who make suggestions in good faith, hoping they are being helpful and these suggestions are based on some of their own experiences or research for themselves or a friend. I just have to chime in, however, and talk about my experiences with the supplements and say that beyond a certain point they are not helpful, but an aggrevationa and hinderance. And this doesn't even cover how hard it's been over the years I've had CFS to find medications for blood pressure or antibiotics I can tolerate when needed. The only thing that goes well is small doses of Xanax and I used to take Darvocet. Now I take half an Ultram a day.

    And yes, it is truly exasperating.

  8. SherylS

    SherylS Member

    Guess we are two-peas-in-a-pod......or birds of a feather, etc.. Glad there is someone else like me, and at the same time, sorry for you.
  9. IanH

    IanH Active Member

    ME/CFS is a wide-spectrum illness, actually just a label for a set of symptoms that seem related. You cannot define an illness by a person's response to a treatment.

    About 48% of people diagnosed with ME/CFS fit the criteria for FM
    About 30% of people diagnosed with ME/CFS fit the criteria for MCS
    Some people with ME/CFS have distinctive POTS
    Some people with ME/CFS exhibit swollen lymph nodes
    Most (but not all) people with ME/CFS suffer distinctive PEM
    Some people with ME/CFS shown diminished grey matter mass
    Some people with ME/CFS have low blood volume
    Some people with ME/CFS have chronically disturbed sleep
    Some people with ME/CFS exhibit low blood pressure
    Some people with ME/CFS have hyperthyroidism
    Some people with ME/CFS have hypothyroidism
    Some people with ME/CFS have chronic diarrhea
    Some people with ME/CFS respond well to mitochondrial myopathic treatment
    Some people with ME/CFS respond well to glutathione repletion
    Some people with ME/CFS respond well to SSRI's

    I think you get the point.
    The problem appears to be that when you have an neuro-immune dysfunction the symptoms will vary widely.

    The research carried out in Australia by Drs. Staines and Marshall-Gladisnick
    have clearly shown that this variation is based on biochemical variations. Similarly other researchers including Dr. Klimas have shown a definite variation in symptoms expression and degree. as yet there appears to be no way of knowing who's who.

    We have to accept that there are many "sub-groups" in this illness.
    Those with MCS have a real tough time with xenobiotics and xenotoxins. Often the problems with supplementation relate to the preparations of the active ingredient. Remember that often the supplements, like pharmaceuticals are being taken as treatments so they are sometimes reaching toxic levels (just like the drugs). It is a well known problem that people with MCS (ME/CFS) have serious reactions to drugs. In this respect we must think of supplementation as we would drug treatment. Taking toxins such as drugs is not a problem if it helps or protects and the side effects or damage is not too severe or is worth the benefits
    Many people with MCS react badly to the following typical ingredients of supplements:

    titanium dioxide
    some forms of silica (you would think silica was pure but it is not, people with SLE must not take extra silica)
    gelatin preparations
    magnesium stearate (which causes many people with MCS a problem, some evidence suggests it increases immune pro-inflammatory cytokine release and in turn possibly, IFN alpha and some interference with NKC function)

    We have several people in the above category, "with MCS" who simply cannot take any old preparation off the shelf. I recommend taking the active preparation out of the capsule. This will not suffice for some though.

    Vitamin D is almost never taken in pure form (because of the amount of dose, similarly with B12 and Folic acid)
    vitamin D is often adsorbed (not absorbed) onto the surface of powders such as rice milk or mixed with other oils even if it is not in capsules.

    The reactions people are saying they get are typical of people with MCS. These are not typical ME/CFS reactions but of course we cannot separate the two conditions. If you have MCS you will find it a difficult and nauseous task to find appropriate preparations. In addition there are people with ME/CFS who, as their illness progresses do develop MCS. In fact everyone has some sensitivities to some foods or other substances in the air (not allergies) so to have people with ME/CFS with them is to be expected. However in ME/CFS these sensitivities become exaggerated. When there are many of them, we call it MCS.

    So much research tells us repeatedly that the toxin metabolism is dysfunctional so exacerbating oxidative stress. As we age (>60) this happens anyway, so one would expect that people with ME/CFS would become more sensitive to these "toxins" as they age with their disease.
    Ian Hodgson PhD.
    [This Message was Edited on 12/07/2012]
  10. harrysmom

    harrysmom Member

    I appreciate you posting this and found reading it very helpful. Sometimes when you have these conditions/symptoms it helps a bit just knowing you're not the only person in the world dealing with it. Many thanks.
  11. SherylS

    SherylS Member

    I have often wondered if it is the gelatin or magnesium stearate that bothers me. So can I just dump the supplement out of the gelatin capsule and take it that way?
  12. IanH

    IanH Active Member

    Yes, the capsule is just to contain it and make it easy to swallow. It is totally unwanted material. Capsules are only useful when enteric coated for the delivery of probiotics or other substances that need to bypass the stomach.

    In fact if you have a sensitive stomach I advise crushing tablets in a pestle and mortar.

    You should always take tablets/supplements/drugs with a glass of water.
    [This Message was Edited on 12/08/2012]
  13. jole

    jole Member

    I started out with FM/CFS and over the years became unable to take lots of meds/supps. I never gave it a thought that it could possible be MCS as well, but what you just said makes sense.

    People push things all the time. Had a person constantly bringing over 'cures' that she'd paid good money for, trying to help me out. Never did I get more energy or less pain, but I always felt worse. Anything with niacin seems to be the very worst thing for me. I know my diet isn't the best because I lack the energy to cook, but trying to supplement sure doesn't work for me either :(
  14. IanH

    IanH Active Member

    My daughter is just like you. Ever since she became ill (ME) she has not been able to take supplements. More lately she has managed to find a B12 (sublingual) that is OK. She can take vitamin D now too.

    Things do change over time for some people. I do not believe the sensitivities are fixed for all time so I recommend that peopel do search around and every now and then give something a go especially when it is an important supplement such as B12 or folate.

    I have found few people with MCS can tolerate NAC but some of those could tolerate S-adenosyl methionine.

    Many people with MCS have persistent candida overgrowth so they have to be careful, as some supplements increase Candida, for example D-Ribose which is often recommended for FM.

    In addition digestive pH is also important. Some have found it helpful to take Potassium Citrate which increases gut pH (lowers acidity). This accompaniment can help them take other supplements which may be causing their disturbance by altering pH.
  15. MicheleK

    MicheleK Member

    Very well explained Ian. Thank you.

    I personally seem to be able to tolerate supplements and drugs but know so many patients who feel quite sick when they try them. It is good to try one thing at a time so as to be able to detect what may be causing an issue or a benefit.

    Jamin, I too wonder who the "we" is in regards to that post. I think when people make such strong statements and represent themselves as some kind of medical experts or treating physicians they should identify exactly who they are. Otherwise one is left to wonder if the person should even be listened to since there is no reference of who they are and what their education is.