Invest in ME Conference 12: First Class in Every Way
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Can't tolerate meds. Frustrating

Discussion in 'Hypersensitivity and Intolerance' started by Grigor, Dec 9, 2016.

  1. Grigor

    Grigor Senior Member

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    Hi,

    As mentioned I can't tolerate meds . The only way to up medication is with crumps which barely works. When I take too much. I end up not being able to tolerate that supplement or medication at all. Even at a lower dose.
    I have severe POTS and severe ME. And need help but I end up with way to low dosage of anything to have effect.
    Did anyone find out why this happens.

    Oh and don't make the answers too long. Have a hard time reading. Thank you so much in advance.
     
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  2. frederic83

    frederic83 Senior Member

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    When you say you can't tolerate meds, do you mean you POTS and ME symptoms like brain fog, fatigue, etc are worse ?

    I can't tolerate meds or supplements neither, because my GI track can't handle it, mostly, I have too much inflammation in it. Then I feel the fatigue or I end up sleeping a few hours then I feel better when the drug or supplement is weaning off its effect.
     
  3. Grigor

    Grigor Senior Member

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    Well it seems everything gets worse. Totally over stimulated. Like an outer body kind of feel. And pretty quickly after taking the meds. Would say half an hour. Not enough time to get to the GI track. Though those also are flaring up the next day.
    But a crump is really annoying. I mean come on.
     
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  4. Invisible Woman

    Invisible Woman Senior Member

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    Ok. I have struggled with some meds too.

    Some meds can be dispensed in liquid form. This means you can start with really tiny, almost homeopathic doses.

    When trying meds I used to:

    Take the smallest dose possible. Wait one week and if nothing happened, take another dose. If after the third week I was ok then I would leave a gap of 5 days. Then three.

    You will get to a point where you might need to decide whether you are going to increase the frequency of the dose OR increase the dose itself. If you increase the dose then give it at least 2 or 3 weeks, ideally longer before you make any more adjustments.

    When I had a reaction I would stay away from that medicine or any others in it's class for a good 3 months before trying something else.

    Keep a very close eye on interactions. Some meds & supplements will enhance the effects of others, making them seem a lot stronger.

    It's also worth checking which brands others have used and how they got on.

    Also consider if it's the medication itself or an inactive ingredient that could be causing the problems. I mean any coatings or fillers.

    Sorry if it's a bit long. Have spaced it to make it easier.

    Good luck.
     
  5. Grigor

    Grigor Senior Member

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    Thank you for your reply. But you also can't tolerate more then a crump and the beginning?
     
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  6. frederic83

    frederic83 Senior Member

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    The GI track begins with the mouth.

    That's what I experiment too, it is the time before the drug absorption.
     
  7. Grigor

    Grigor Senior Member

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    Interesting. So you think it's the gut?
     
  8. frederic83

    frederic83 Senior Member

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    Not exactly. In my case, when I try a supp, I generally feel more inflammation in my stomach, that is why I'm tired. I have the same results sometime when I try a drug that acts in the brain, because I have brain fog, inflammation in the brain. It is like a broken and strong homeostasis in me. So when something works, it does not last or I just feel worse.

    But your problem could be autoimmune or a viral/bacterial infection in the brain or somewhere else, for example. You will probably feel worse and the drug will throw a bunch of cytokines in your system. It depends on you problem and the cause of your CFS, I think.

    You can apply the drug transdermally, if it is possible and if the gut is a problem. That is not possible with every drug because some are poorly absorbed or need to be process by the body before to be active.

    I tried to ramp up the dose with drugs or supps, I could stay on a tiny dose for months, then increase it slowly, I'm still intolerant.
    I used to tolerate well supplementation before, but felt not benefit from it even with copious amount of pills, though.

    I'm just guessing. It is hard to know with proper testing and diagnosis.
     
  9. Grigor

    Grigor Senior Member

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    Hmm yeah. It's hard to know.

    The last paragraph sounds exactly like me.

    It's hopeless. I'm now on 5 Mg Mestinon which is huge for me. Took me months but after a week the effect goes. And obviously 5 Mg is nothing.
    Propranolol only a 1/16th of a pill.....
     
  10. Mary

    Mary Senior Member

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    @Grigor - Muscle testing (or applied kinesiology) has helped me a LOT in determining what I need, what my body can tolerate and dosing. Here's one place in Amsterdam (I'm in the U.S.) which does this: http://nekwerk.nl/?page_id=32

    I would be lost without muscle testing.
     
  11. Grigor

    Grigor Senior Member

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    Actually I've done that once when I got ill. In the beginning. Interesting. But right now I'm too ill to have someone in the same room. So I guess it has to wait. An injection might be ok. But this takes a little longer
     
  12. Mary

    Mary Senior Member

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    Sorry to hear that! Though I don't know what you mean by an injection - the muscle testing I've had done just involves the chiropractor pressing on certain points and seeing if my muscles go weak or strong and I've gotten a lot of information this way.
     
  13. Grigor

    Grigor Senior Member

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    Sorry. Haha. Meant drawing blood. For other type of tests. That would be quick.
     
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  14. frederic83

    frederic83 Senior Member

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    How do you know what your body need and dose by pressing a muscle ?

    Do you do it yourself ?
     
  15. Daffodil

    Daffodil Senior Member

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    @Grigor my doc gives low dose IVIG to those who cannot tolerate the treatment meds
    xo
     
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  16. Mary

    Mary Senior Member

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    You should google "muscle testing" or "applied kinesiology" and learn how it works. I can't tell you how it works in a few sentences, but it has to do with energy meridians. For someone who is trained like many chiropractors are, they can tell a lot about what's going on by doing muscle testing - different points on the body correspond to different organs and systems. A lot of people say it's nonsense, but I've had very good results with it.

    And by holding various supplements, they can tell if my body likes it or not, and how much to take.

    You can do a certain amount of muscle testing yourself - watch some youtube videos - but I think at least initially it would be much better to find someone who is well-trained so you can see how it works. My current chiropractor is very good at it and can do things I can't, though I do it myself routinely. It's really important to keep your mind neutral or blank while doing the testing - otherwise you can affect the results.
     
  17. frederic83

    frederic83 Senior Member

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    I'll watch, thanks.

    The bad news is that you have to buy the supplements prior if you want to do it yourself :)
     
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  18. alex3619

    alex3619 Senior Member

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    One of the drugs I cannot tolerate results in an adverse reaction within 20 seconds. That is FAST. The drug reaction is also in line with a known side effect.

    Many drugs require activation. I suspect I am a hyper-activator for some drugs. That means that a micro-dose is like an overdose. I always test new drugs at super low doses first. Crumbs. A crumb of that drug I mentioned, mirtazepine, knocked me out for four days, as in unconscious/sleeping.

    If your symptoms are more ME related, or POTS related, then it might be something else. Or not. One thing I have repeatedly noticed is I get mild adverse reactions from NSAIDs, and anything up to severe reactions to most drugs that affect the vascular system.

    Most drugs, and many supplements, and some supplement additives, mess with many biochemical pathways in the body. Its very hard to determine exactly what they are doing when something goes wrong.
     
  19. Thinktank

    Thinktank Senior Member

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    That is exactly my reaction to most meds! Feeling overstimulated / restless, even on very small amounts.
    For example, even valtrex 1/8 tab which is just a crumb leaves me feeling overstimulaed for a whole day.
     
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  20. Mary

    Mary Senior Member

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    Actually sometimes I go the health food store when I'm thinking of trying something new, and I will hold the bottle of whatever it is, and test myself right there before buying ..... but again, I don't recommend this for someone new to this.

    Good luck! :nerd:
     
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