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Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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Feeling better after stopping supplement

Discussion in 'General Treatment' started by JES, Jul 11, 2015.

  1. JES

    JES Senior Member

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    This is something that has been intriguing me for a while, so I would like to know if anyone experiences the same. My response to supplements (immune stimulating ones in particular) is generally the following.

    1. Start to take new supplement (for example LDN, coconut oil or beta glucan). Within two days increased energy, better productivity, less anxiety, everything going nice.
    2. Within a week to two, worsening of old symptoms, especially anxiety, brain fog, depression. Very slowly this improves but still is worse than baseline.
    3. Quit supplement. Within around two days I feel great again, best ever. Brain fog much less, better focus, clarity and sleep.
    4. Back to baseline. Within 3 or 4 days, the old baseline symptoms start to creep back.

    I respond like this to most CFS supplements, but sadly I've yet to find one which I could sustain the improvements on. I guess I should be happy that I get any type of response at all, as many people don't, but I'm still searching for a way to optimize the number of good days.
     
    geraldt52, Tammy and MeSci like this.
  2. AaroninOregon

    AaroninOregon noob

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    @JES this is somewhat similar to my experience with most supplements.

    Although, some supplements don't make it past one day, the ones that make a noticeable improvement for me, without immediate undesireable side effects, the benefits are typically short lived.

    Then there are the supplements that i can take every day without any noticeable benefit/ burden from day 1 on.
     
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  3. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I'm not sure whether I have had this, as it's often so hard to know what to attribute things to. But I think I have sometimes noticed an adverse effect after a few days or weeks, without necessarily having had any prior positive (or negative) effects.

    But I wonder whether it might be telling you to reduce the dose/take the supplement less often? Maybe initially it corrects a deficiency, then it starts over-correcting so that you have an excess.

    Trouble is, once an adverse effect appears to have occurred, I tend to be nervous about restarting, at any dose.

    That's where appropriate tests would help, but they are not always available or easy to obtain.
     
    Tammy likes this.
  4. Hip

    Hip Senior Member

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    I note that LDN, beta glucans and coconut oil are immunomodulators.

    Dr Cheney feels that immunomodulators lose their effect if taken continuously, and advises that they should be taken on a pulsed basis (eg: take for 4 days, then stop for 3 days, and/or taking them for 3 weeks, then stopping for 1 week).

    Immunomodulators often make ME/CFS patients feel worse for the first few months, but benefits may accrue after that initial period.
     
    Last edited: Jul 12, 2015
    ebethc, dannybex and Tammy like this.
  5. GONZ0hunter

    GONZ0hunter

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    I take all kinds of supplements, none have any effect. I don't have much of sensitivity to meds though.

    Except all muscle relaxers other the flexeril knock me out. And make me super dizzy.

    It just all feels like a money grab. Lots of Drs now sell them as well. It's hard to trust the guy who is prescribing the thing he is selling. I know it works to a lesser extent with pharmaceuticals.

    The worst dr I met that did this was a guy who told me to take some super extreme doses of vitamins, then he spent 20 minutes trying to convince me to buy a magazine he sells. He said "you have to read it 7-8 times to really understand it, I even have to".

    If they work for you then I'm glad you find relief. They just rarely work for me.
     
  6. Hip

    Hip Senior Member

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    Have you tried any supplements specifically shown in studies to be beneficial for ME/CFS?
     
  7. Misfit Toy

    Misfit Toy Senior Member

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    What I think is interesting about this is...how many of us really want to feel worse for months, not to mention...what if it's just that you feel worse....for longer...then what?

    Again, a crapshoot. The whole..."You have to feel worse before you feel better" haunts me.
     
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  8. Hip

    Hip Senior Member

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    I don't mind feeling worse for a month or two, if I have it on good authority (ie, from experienced ME/CFS doctors) that with the supplement or drug in question, I will likely start feeling better a bit later on. In fact with certain supplements like oxymatrine, feeling worse is a very positive sign that it is working, and that good results are just around the corner.

    However, if I take a random supplement and feel worse from it, I invariably stop taking it, because I tend to assume I will always feel bad on it. But sometimes I wonder if I should persist a bit longer with supplements that make me feel worse. Yet it's hard to do persist if a doctor has not specifically promised you will see the light at the end of the tunnel, if you brave it through the period of worsened symptoms.

    Another thing is that I don't mind feeling temporarily worse from a medication in terms of getting extra fatigue and brain fog; but if I get extra depression, then that I find very difficult to bear.
     
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  9. Misfit Toy

    Misfit Toy Senior Member

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    Yes, @Hip -that is true. I have so many conditions including interstitial cystitis, fibromyalgia, joint pain, a rash, endometriosis, and the list goes on.

    I feel like I'm constantly dealing with a barrage of different illnesses that act up from one day to the next which makes it hard to know if the supplement I'm on, or the medicine I'm on is making me feel worse, or if it's just the condition acting up or all of the conditions.

    The one medicine that made me feel lousy and yet I got better over time was fluconazole. When I was told I was killing yeast and I was going to have a Herxheimer -I believed it. And it did get better. But yowza, killing off yeast was hard. And it did get better. Caused some depression that after a few weeks dissipated. And I was clearer mentally and felt so much better.

    Wish it had lasted!
     
  10. nandixon

    nandixon Senior Member

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    @JES

    If you're needing an immunostimulant, I've been having good, continuous success with cimetidine (Tagamet) - 50mg (1/4 tablet) taken twice a day about 1 hour after breakfast and perhaps 2 hours after dinner (trying to space the doses about 12 hours apart and so to have the least interference with stomach acid secretion).

    For more info, just do a search on "cimetidine" and perhaps my user name in the "Posted by Member" box. (Be sure to uncheck the "Search this forum only" option.)
     
  11. JES

    JES Senior Member

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    @nandixon

    Yeah cimetidine is something on my list to try for sure in near future, or more specifically ranitidine in hope it has similar effect (my country only has that form available OTC).

    The pulsed protocol is something I might eventually settle on, thanks for pointing that out. Because as was mentioned, feeling worse is only acceptable to certain extent for must of us. I don't generally mind some common side effects (upset stomach etc), but when a supplement produces constant depression-like feeling (I don't have that normally), brainfog, decreased mentaly performance, at some point I have to quit (worst of all for me was a garlic extract, after a week on it I couldn't think clearly anymore).
     
  12. oceanwild

    oceanwild [banned as spam]

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    well. stop take the supplements may good for u. eat the nature food that contains variety nutrition
     
  13. ebethc

    ebethc Senior Member

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    It is a hard call to "tough it out" or not... I used to think that if I could tough it out, I would feel better... that the supplement or drug was pushing something out of my system.. However, i'm less inclined to believe this now. I felt very sick - and uncharacteristically depressed - on Nystatin... I thought it was yeast die off so I finished the round... I felt no different afterwards..

    I've been taking Host Defense "Breathe" (reishi, chaga, cordyceps) and felt great at first, and felt like maybe I could even get rid of the sore throat and swollen lymph node in my throat finally. I could take a deep breath.. My sinuses & lungs were clear, and it was amazing how just breathing deep could make me feel better.... Now this week I feel lousy & discouraged & confused (no depression, like Nystatin).... I definitely don't want to stick it out...I'm passed that notion... However, the "pulse" idea is interesting....

    PROS
    Improved NK function (mine is terrible)
    I'm immune deficient (not auto-immune, which is not a match for immune modulators)
    Better breathing

    CONS
    I feel like a truck ran over me... some symptoms = worse... aches, pains, itchy eyes
    I just read that beta glucans can reduce e coli, but it doesn't say if it reduces GOOD e coli, which is already low in CFS patients... Can't find any info any where else..

    UNKNOWN
    I know that beta glucans are Th1 boosters, but I've never understood the Th1 vs Th2 debate so I don't know which applies to me.... I get every cold/virus that goes around, which is atypical for CFS, apparently.... I don't know if this means beta glucans (Th1 stimulation) would be bad for me

    NEXT
    taking a break, then pulse .. maybe
     

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