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Stop taking all supplements and or drugs?

Discussion in 'Mast Cell Disorders/Mastocytosis' started by Nickster, Sep 2, 2017.

  1. Nickster

    Nickster Senior Member

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    Has anyone stopped taking all supplements or drugs? Just wondering if we are doing more damage than good with all of the outside supplements and or drugs. We start to take a drug and it has a side effect and than we need to take another drug for that side effect and on and on.
     
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  2. TigerLilea

    TigerLilea Senior Member

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    I stopped taking everything about six weeks ago. I discovered that the multivitamin I was taking was making me very lethargic and I was sleeping for two to three hours every afternoon. This went on for five weeks. I was never consistent with taking vitamins; I'd take them for a few weeks and stop because my CFS/ME was so much worse and I couldn't be bothered with taking them. But I now realize that the times when my CFS/ME was getting so much worse were probably the times that I was consistently taking my multi each day. Not once when I went into any of my GPs over the years complaining of feeling so much worse did they ever ask about supplement use.

    Something else I discovered that I cannot have is Chamomile tea. For the past several years I would have the occasional mornings where I'd feel very nauseous and I'd feel tired all day long but I didn't know why I felt this way. Instead of drinking milk or hot chocolate at night I started to have two cups of Chamomile tea every night. For weeks I felt as nauseous as could be in the morning and I was so tired I did not want to get out of bed in the morning and could barely function during the day because of the tiredness. It finally occurred to me that this started after I started drinking Chamomile tea every single night. I did a bit of research of discovered that one of the common side effects of Chamomile is nausea. It took me a while to find that the main medicinal ingredient in Chamomile builds up in the body over several days and that for some people they can end up with "extreme" fatigue. Since I stopped both the tea and the multi vitamin, I feel alive again which I haven't for some time now. I still have CFS/ME, but that is exhaustion, not lethargy or tiredness.

    I started doing some research on vitamins and supplements and have come to the conclusion that we probably take doses that are more than is necessary for our bodies and that we are probably upsetting the balance of all the vitamins and minerals by taking some in massive doses. I'll be honest - I cringe when I read of some of the doses that people here on PR are taking and some of their reasons for taking them. I worry about the future damage that some of this could lead to.
     
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  3. Nickster

    Nickster Senior Member

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    I agree. Vitamins are relatively new to us and who knows what is in them. In the past our bodies survived off of natural nutrients. We may be causing more problems rather than solutions.
     
    Last edited: Sep 3, 2017
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  4. Wonko

    Wonko Senior Member

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    The other side.
    In my 28 years of suffering from M.E, I mainly haven't taken vitamins or drugs. I've had periods like everyone else when things have been tried but I keep getting caught by the works for a few weeks/months and then things rebalance trap. So I give up and a couple of years later I try again. I've had periods of significant pain where I've not taken anything, I've had periods where I have, through most of the last 2 and a half years I've had easy access to opiates, which work for some types of pain but make others worse, I've had periods within that 2 and a half years where painkillers have got me slightly stoned so I've assumed they're unnecessary so I haven't taken any, sometimes it's been fine, sometimes I've regretted it.

    Chamomile tea, people don't like me on chamomile tea, I feel fine, maybe even happy (not a normal state for me), other people say I'm suicidal, but what's really off putting is that I am cheerfully suicidal.

    I disagree with the comment about never needing vitamins before, people should survive off natural nutrients. With modern farming the food chain is broken, many vegetables contain a small percentage of the minerals they did even 50 years ago, the famous, often given example, being spinach having 10 times less nutritional value than it did 50 years ago. So if you don;t want to eat a wheelbarrow of the stuff - maybe careful supplementation is a good idea, and I don';t mean getting the cheapest multivit you can find.
     
  5. geraldt52

    geraldt52 Senior Member

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    +1.
    I would highly recommend that people take an extended vacation from the things they are taking, and my bet would be that their symptoms will continue to wax and wane with little rhyme or reason, with or without the supplements/drugs. I think people take something, feel a little better, then assume it was what they took, and keep on taking it...when it is just as likely it was just part of the characteristic waxing and waning of CFS. I can honestly say that, 33 years in, everything I have taken, the only exception being intermittent lysine, has made me worse in one way or another.
     
  6. Nickster

    Nickster Senior Member

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    My grandfather lived on a farm and they used "well" water and the water was stored in the dirt and had lots of natural nutrients such as copper, magnesium and more. Now we get our water from our city pipes or purified and stripped of any nutrients.
    That same grandfather never had any dental issues - not one filling or gum issues. He lived to be a healthy 93 year old.
     
  7. Alvin2

    Alvin2 If humans were rational...

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    I'm assuming he ate free range meat with plenty of Vitamin K2
     
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  8. Nickster

    Nickster Senior Member

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    Yes he ate grass fed beef from the farm, fresh milk from the cows, eggs from the chickens and whatever vegetables where in season at the time. There were times that they were limited on food and one season they just ate potatoes.
    Now I myself could not live on a farm as it's just not my way of life. Farm living is hard to do in our world now. But, there is something to healthy living.
     
    Last edited: Sep 3, 2017
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  9. Alvin2

    Alvin2 If humans were rational...

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    Vitamin K2 prevents cavities/osteoporosis and clogged arteries. Works best when coupled with Vitamin A (bones/teeth) and Vitamin D (arteries).
    It is found in animals who eat plants with chlorophyll and not factory farmed
     
    Last edited: Sep 3, 2017
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  10. alicec

    alicec Senior Member

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    I do this from time to time, mainly when I have gone too far with some supplement and feel I have greatly unbalanced something.

    What I inevitably find is that I soon feel much worse. In other words, while there are plenty of supplements that I have tried and stopped taking either because of no apparent effect or because of adverse effects, there are some that are most definitely and consistently helpful.
     
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  11. Valentijn

    Valentijn Senior Member

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    If I run out of the ones that work for me, or forget to take them, then yes, I feel quite a bit worse. Magnesium helps with my muscle twitches and cramps, fish oil with an otherwise constant headache, and NAC with wired-but-tired so I can get to sleep. And hydroxoB12 injections seem to help with a deep vascular pain. Also digestive enzymes so I can eat gluten from time to time.

    I'd be in more pain, sleep-deprived, and a lot more limited in how much I could do with my muscles before twitching and cramps would start. Accordingly, people who suggest ME patients shouldn't be taking anything for their symptoms are welcome to shut up and have at it themselves, and leave the rest of us in peace to manage as best we can :cool:
     
  12. pamojja

    pamojja Senior Member

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    I'm of the opinion there should always be informed consent for taking supplements or drugs. Practically that is rarely happening for prescriptions, and even for a very invasive procedure I had to inform myself with other means about benefits versus risks myself. Therefore, with a serious medical condition stop taking all in real live could only happen, if one added things without educating onself on each individual addition first.

    Just as an example, here the benefits of what I was prescribed 9 years ago:

    Since in actuality the benefit of prescription and invasive medicine isn't much better than Russian roulette, I decided to use none of them. All of it.

    Next - with lack of alternatives - I informed myself about benefits and risks with natural remedies. Which is a bit more difficult when it comes to benefits, because with non-patentable natural compounds, nobody would finance expensive double blind studies out of economic reasons, as it would with profitable patentable drugs. And only animal and case studies are available.

    However, the risk to me, compared to pharmaceuticals, was really charming:

    [​IMG]
    [​IMG]



    With so little real risks I started Linus Pauling therapy (high dose vitamin C, lysine and all other nutrients) and haven't regretted one day. An 60% walking disability has been revoked due to it's benefits. And pioneers in orthomolecular medicine, like Linus Pauling, or Abram Hoffer, all made it into their 90ties.

    I rather cringe at the poly-pharmacology so often happening, with little and no improvement in sight, and comparatively immense risk involved. And can only hope each and everyone did thoroughly evaluate, before embarking on it.

    But in the end it comes down to how much risks one is willing to take. I'm not a risk taker. But am of course fine with it, if others are. Informed.
     
    Last edited: Sep 3, 2017
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  13. Apple

    Apple Senior Member

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    I'm at the point where i'm trying to come off several different prescription meds as i'm not actually feeling better on any of them, just different.

    Insomnia meds help me sleep, but i'm pretty sure they worsening my day time fatigue and shutting down my bladder.
    My proton pump inhibitors help my GERD a bit, but my stomach now doesn't want to digest food, causing weight loss and forcing me to take anti sickness tablets which cause drowsiness.
    Beta blockers for POTS slow down my heart rate, but don't actually reduce orthostatic intolerance that much, and again, i'm pretty sure they're worsening fatigue overall.
    Codeine simply drugs me. Doesn't actually help the pain.

    I really do think people need to take a second to weigh up whether meds are actually helping or just masking / making things worse. In my case i've ended up with more prescriptions than my Grandmother and i'm actually in a worse state than ever.
     
  14. Dechi

    Dechi Senior Member

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    I have tried many supplements. Sometimes paying hundreds of dollars per month. Now that I am broke, I stopped most of them and don't see any difference, really. Except maybe magnesium, it probably helped me sleep. I still take Omega 3 (had a big bottle left), something for hair loss and just bought a multi-vitamin and calcium because I don't eat well.

    And still taking small doses of nimotop.
     
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  15. Mij

    Mij Senior Member

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    I've narrowed my supplement intake to a few I feel help with symptoms and ones I've tested below normal in the past.

    I take magnesium, vitamin D, digestive enzymes, fish oils and B-Right (and extra B-12) and have started taking Bone-Up because I'm in menopause.

    I took CoQ10 for years but don't feel I need it anymore, it actually makes me feel hyped and disrupts my sleep.
     
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  16. AndyPandy

    AndyPandy Making the most of it

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    I'm still happy to try new supplements for specific issues.

    If they seem to help I continue with them. If not, I stop them.
     
  17. mhrps

    mhrps

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    I have spent a lot of money for supplements which failed because I can't tolerate them any longer. I take only vitamins and minerals in normal doses.
     
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  18. rosie26

    rosie26 Senior Member

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    I take very few things now. At the moment it's mainly paracetamol, the odd voltaren tablet when my headaches feel especially bad and cetirizine is handy for when I think I need it. I stopped the HRT, fish oils, d ribose.

    I am thinking of trying thiamine soon.
     
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  19. Nickster

    Nickster Senior Member

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    My 25 year old son takes LDN and tried to stop it and had severe pain return. Also, he takes motilium for the nausea and has a hard time stopping that.

    It is frustrating because it is trial and error and with ME body so weak it's hard to take anything. I think Dr Ron Davis was onto something with his nano device that takes your body fluid and the drug to see if it will indeed work for your specific body. In the meantime, it's just frustrating.
     
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  20. rosie26

    rosie26 Senior Member

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    The weakness is when my ME is at it's very worst. I don't want anyone or anything touching me, too sick and weak to handle side effects from medication. It's a desperate state, I don't even want to think about it too long because it upsets me and it scares me as I know I will probably again have a severe bout and I never know if it is staying for good or whether it will pass.
     

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