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Feel better for Stopping all supplements

Discussion in 'General Treatment' started by justy, Mar 28, 2014.

  1. justy

    justy Senior Member

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    Anyone else had this experience?

    I tend to react in strange ways to most meds, supps and even diets - after years of trying different things I am now back in a take nothing faze. I am not Better Better, just almost back to 'my normal' which feels do- able - at least for now.

    I also am one of those patients who has a general tendency to improve without much except rest and no stress. By this I mean very very slow upwards trajectory. Gone from being 25% 5 years ago to now about 45%, some days a bit more, some days less.

    I sometimes try and calculate how many years it will be before I feel completely better at this rate - perhaps about another 5- 10 years - joking really, I know this isn't how it works.

    I like the feeling of knowing it is just the illness making me ill and not the things that I am taking or doing to try and make myself better. I have a baseline again.

    All the best
    Justy.
     
    Bob, Tito, merylg and 3 others like this.
  2. Wendi C

    Wendi C

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    Hi Justy!

    Been there! Supplements always bother my stomach for some reason; usually B vits, but I recently had to stop the methylation protocol. I still take my daily plethora of supportive nutrients, but good lord, I feel so much better than when I was taking Methylfolate. I have to re-group and talk to my MD about what's wrong downstream that the protocol is not working for me and causing such havoc.

    Best to you! - Wendi
     
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  3. golden

    golden Senior Member

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    yes, i definately recognise this.

    glad to hear you are back to a good base line.

    :)
     
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  4. PennyIA

    PennyIA Senior Member

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    I know I've found that when I've seemed to have a bad reaction to supplements (which happens really frequently, even when I try the start low and go slow approach)... that I have to stop everything before the negative reaction stops (not just the most recently added or increased supplement).

    I have also been taking at least one day on the weekend (sometimes two) where I take very few, if any supplements.

    And my acupuncturist is suggesting a week-long holiday at least once a quarter where I take zero supplements, but she's thinking maybe even as often as once a month. I'm not sure I'm ready to skip out on that much methylfolate. Maybe if I felt like I was at the top of my game... then maybe.
     
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  5. philpot

    philpot

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    I think with supplements often we feel we should be taking them, and that we are missing out on something if we are not, rather than actually realising they are not always what they are cracked up to be.

    Regards.
     
  6. golden

    golden Senior Member

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    tbh i was never one for supplements (its my macrobiotic background)

    it was an applied kinesiologist who prescribed them first and i got a very very bad reaction.

    then in more recent years a CFS doctor and my Naturopath made me feel pressurised. (some unspoken - some overt).

    they seem to have no clue.

    i was also pressurised into trying thyroid meds but refused point blank. fortunately i think for me since no one bothered to check my adrenals.
     
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  7. justy

    justy Senior Member

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    @golden yes that was another issue I had - saw an M.E friendly private doctor who prescribed Armour without checking adrenals. I had a few amazing weeks and then got very very sick. It took me months after stopping to get back to baseline. I then checked adrenals and yep - super low cortisol, super low DHEA. The next doctor prescribed HC cream and DHEA. I didn't take the HC - too worried as I've had problems with steroids in the past, but did take the DHEA - I was told it is a natural product that our body already produces so cant be a problem

    I started very low dose and as i worked up got a reaction that was quite nasty - crying, sweating, insomnia on just 2mg a day. So I have stopped that which messes up the plan of my Dr to get adrenals working, then back to armour in 6 months or so. its never simple is it?

    The thing is I don't think these kind of reactions are just confined to people whoa re the most sick. I am still having this reaction, although less severe even though my functioning has improved.

    What are the theories? MSC? lack of detox?

    This is something I must remember to discuss with KDM when I go for my 1st appt.
     
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  8. philpot

    philpot

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    I am of the opinion that if a specific deficiency is diagnosed then a specific action can be taken to rectify the situation, e.g., 'you have been diagnosed with B12 deficiency' ok 'let's get you taking additional B12' and so on. The problem here is that ME/CFS seems 'complicated'.......yes well 2 + 2 = 4 was once complicated for stone age man whereas today it's simple even for most infant children, why? Education and which in turn requires an investment.

    ME/CFS is complicated because relevant governments are not prepared to commit the proper resources to investigate the causes; basically it is just being tackled piecemeal. This means most of us cannot get the correct investigations and diagnosis and this in turn means we are often clutching at straws or adopting a scatter gun approach to trying to find a solution.

    I have taken at various times a whole range of suppliments to try and find things that work; not one has made any difference at all, ever. I have changed my diet at various times and in most cases the suggested 'healthy' diet has made matters worse and/or else has not delivered any improvement other than what would be expected even for a healthy person, e.g., eat less and lose weight, and so on.

    I am firmly of the opinion that many doctors and with the aid of the media are misleading people with their constant publishing of scientific studies and which are often not as relevant as they initially appear to be. How often do we see one minute 'coffee is bad for you, butter is bad for your, x is bad for you' and then some years later all the same things are now also good for us.

    There is zero sanction or comeback against the media or scientist who pushed the original 'bad for you' message, they just get away with it, even though millions of people may have changed their eating/drinking habits.

    My take on it is this: If too much sugar is bad for us then why have successive governments and medical experts allowed too much sugar to be put into products? Basically they have failed. If too much salt is bad for us then the same question. Basically they have failed.

    Why have manufacturers been allowed by governments and medical authorities over years to push bleach this, germ killer that, such that people are spraying chemicals all around their houses and living in a sterile environment but which is full of chemicals and whilst overall getting fatter, less healthy, etc? Basically they have failed. I am watching on TV now be careful when you flush the toilet because the water pushes germs out, so you need product x! More chemicals!

    What a lot of bull $hit. Governments have allowed manufacturers to push crap and which had led to people being stuck in air tight homes, due to double glazing and having to stop all draughts to save the envionment, whilst at the same time eating more and more junk food and doing less and less excercise and whilst at the same time in one sense making the environment more sterile, which means we lower our resistance to the bugs we were once used to, but in another sense exposing ourselves to a whole range of chemicals and over a long period of time.

    No wonder we are damn sick!

    I go see my doctors and all they can basically do is dish out antibiotics, write sick notes and/or push the same old $hite that I can read on the internet, which is where they get it from. If you visit with anything other than that which they can read an easy answer from a medical book then most of them are not interested because, because it does not pay them to be.

    I speak to my doctor and he says "this test is clear", ok then doc "what is causing this then" and the doc says "I do not know" to which I say "ok then what are you going to do about knowing then, because hey doc I am an engineer and I fix things and I investigate until I have fixed something and so on and as I understand things, unless I am mistaken and have come to the wrong place, you are a medical doctor".

    "Go away philpot and try a few suppliments and a variety of things a see what you come up with". Our government and our medical profession are failing us justy. That is basically it in a nutshell. The government is responsible for it's people and the medical profession are responsible to find solutions to ill health.

    In reality we have to be our own doctor.

    Regards.
     
    Last edited: Mar 29, 2014
  9. L'engle

    L'engle moderate ME

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    I'm also going back to nothing except mathyl b12. I'm tired of having to dig my way out of side effects and with the knowledge I did this to myself. Fed right up.

    Benefits that last a day and side effects that last months! Wonderful!
     
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  10. justy

    justy Senior Member

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    I'm glad to see - although sorry as well- that this is a shared experience around here, so often I read posts of people marvelling at the benefits of this or that pill or treatment, but as @L'engle says:
    just about sums it up, better than I ever could.

    @philpot - I couldn't agree more!
     
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  11. mermaid

    mermaid Senior Member

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    I have taken a multiplicity of supplements over the years and never sure that any of them have made a jot of difference....other that is than the digestive ones, and I think they have. At least they have definitely made a difference to my husband, though he doesn't have ME!

    I am having a rest from some of mine at the moment, as I reckon that maybe I might be getting a lot of my nutrients now from my food so maybe I don't need all of them anyway.

    One interesting thing that I did observe was that I was unable to take the Acetyl-l-carnitine supplement even though Dr Myhill reckoned I had probably produced her worst result for Carnitine ever around 4 yrs ago. My gut just could not tolerate the supplement, and as I had a red meat diet, I wasn't quite sure why I had a problem. However even without taking it when I had it retested last year, my result was almost in the normal range without taking a supplement for it! I am guessing that my HCL Betaine had helped the absorption and function of my gut, but it shows you don't always need a supplement.
     
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  12. Kati

    Kati Patient in training

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    i have been observing people in here discussing supplements, trying various diets and supplements, protocols and what not, ordering from cheap pharmacies or giant online supplement companies. If someone says they have been helped by one product, everybody rushing and buying it.

    What I notice is... People are still here, and still sick. And the hundreds of dollars spent in supplement likely went to the toilet, litterally.

    There is a market out there for desperation. What I think we truly need is biomarkers, science, clinical trials and research.

    Best wishes @justy. i'm glad you're doing better.
     
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  13. Tito

    Tito Senior Member

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    I have stopped everything almost 2 years ago. And guess what? I am globally better. The boom-and-crash cycles have flattened. It is much easier to manage mentally speaking. I feel free from counting tablets, checking time, preparing injections, finding the 'best' doctor, understanding the meaning of blood results, running like a beheaded chicken from one treatment to the other (according to the hype of the moment), etc. I think less about that disease. I have more time to do other things. I am not in a race any longer. I am not wondering when I will get better any longer. I am still very ill (but not as much as when I was being 'treated'), but i have a better quality of life because I am "free".

    Problems with adrenals? The tests may say so, but what the tests do not say is whether it is a primary problem or an adaptation process of the body to another disease. By experience, I now know that a "treatment" followed by a crash was invariably an attempt to correct something that was in fact an adaptation to the disease.

    Some people say that doing nothing is like 'giving up', meaning we are lazy and/or weak (i.e. Not deserving to get cured anyway). Strangely enough, that comment often comes from other patients who proudly exhibit their medical invoices running into dozens of thousands of dollars. But I do not agree with this. Everybody is free to envisage his/her life the way they want it. We are all at a different stage in our life, in our illness, in our mental development. Stopping all treatment is never offered as an option by anyone. I think it is a mistake. It should be listed as any other option.
     
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  14. philpot

    philpot

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    I think good friendship, companionship, laughter, love, etc., are things which help most of all. They are 'suppliments' :) which work and I reccommend we all take large doses of them! :):thumbsup:

    Regards.
     
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  15. justy

    justy Senior Member

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    @Tito I think you are right that stopping all treatments is a viable choice that people could consider. In fact I have it factored in as part of my 2-5 year plan.

    I am going to see KDM in Belgium in May for a 1st apt - I really want the testing to see what if anything really needs treating, rather than a scatter gun approach. Also I may not be able to afford treatment, but if he finds something to treat and I can find the funds I am going to go with it for as long as possible financially.

    If he finds nothing, or I do not improve at all within 1st year of treatment or we run out of money then I am going to actively decide to seek no further treatment. As part of this plan I will also, if choosing the no treatment option be looking at moving into a town and out of the country as I am so isolated I cannot go on living like this - also the place is too big to manage for me and my husband long term.

    If i'm not going to get substantially better then I want to have a point in time - and it is close when I just totally accept it and make my life less complicated to fit into the illness so that I can enjoy what quality of life I do have.

    All the best,
    Justy.
     
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  16. RosieBee

    RosieBee

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    @ Justy - so much of what you describe is so familiar. Super-sensitive to drugs etc; following the advice of ME-friendly Drs but baffling the doctors with my puzzling test results; inexplicable reactions to supplements and treatments; struggling with adrenal and thyroid treatments - if I had a pound for every doctor who has told me that no one else reacts to medication/ treatment/ a supplement the way my body does, I'd have enough money to pay for all this treatment and more!

    I stop supplements on regular basis to check if I still need to take them, as I find things do change over time and something that was helping me may not be needed anymore or may now be causing problems.

    I stopped all supplements last year and felt better for it at the time but eventually started to decline again. I am now reintroducing supplements one at a time with interesting and helpful results. I found the detailed temperature recording I was doing with the thyroid/ adrenal treatment is proving a very useful tool in assessing the effects of the reintroductions.

    I try to get to a place of 'stability', a stable baseline where I may not be improving but at least I am not getting worse, just taking the minimum of supplements. So when I embark on a treatment at least I have something to come back to if things get difficult. It gives me a sense of having some control over the state of my health.

    @Tito - I agree that stopping treatment is a valid choice and definitely has its benefits. I have found some treatments just cause more damage than benefit, simply because the sensitivity and adjustments to the treatments is just not fully appreciated. Putting energies into just getting through each day, rather than dealing with constant change and adjustment has a lot to be recommended.
     
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