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3 things you tried that made you WORSE!

Discussion in 'General Treatment' started by snowathlete, Nov 13, 2011.

  1. Tristen

    Tristen Senior Member

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    Northern Ca. USA
    Worse:

    -LDN

    -All antidepressants

    -Anything that causes my system to work faster: Cortisol, Provigil, Amphetamines, etc
     
  2. allyann

    allyann Senior Member

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    Melbourne Australia
    Worse:

    GET
    Low GI diet

    No difference:

    CBT
     
  3. Lou

    Lou Senior Member

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    southeast US
    1. Ribose

    2. most any prescription drug

    3. ice baths (yep, a pretty odd try and it worked like a cure the first time, then never again though I froze my arse off trying)
     
  4. gu3vara

    gu3vara Senior Member

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    1. Antidepressants, all of them, awful. The sicker I became, the worse the reaction.

    2. MSM , total collapse after 2 weeks on it. Felt like dying for a couple months after, scary.

    That's about that!

    A friend of mine had to count the number of little balls in the capsule to taper off Effexor. They aren't all the same size and it's a lot of work to do, but she did it in a LONG time! I didn't have much trouble until stop the last 37.5 mg, had to go to 18.75 mg for a while.
     
  5. ukme

    ukme Senior Member

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    Well there's a lot that has helped to be fair, but I would say that antibiotics have had some alarming reactions, thyroid supplements ditto, and then GET was a terrible mistake but I'm sure alot of Brits fall for that NHS chestnut at the beginning.
     
  6. bedman

    bedman

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    Steroids
    St Johns wort
    Iron
     
  7. Gloria H

    Gloria H

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    South Dakota
    Because my fatigue was accompanied by an increase in tremor, I tried supplementary magnesium several times and in several forms. I was convinced to quit every time as I got to feel like a zombie [wanting to sit down, lay down or better yet, sleep].
     
  8. lilpink

    lilpink

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    Pretty much everything has made me worse, but my top 3 would be:

    1) Psyche drugs (all of them...SSRI's are probably THE worst, but it's a close call): horrendous and devastating effect.

    2) Anti-emetics such as metoclopramide (severe extra pyramidal symptoms and fatigue..tortuous).

    3) Nimodipine.
     
  9. Phil

    Phil

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    Altadena, CA
    "cranial osteopathy - left me with a really painful neck & empty bank account"
    Hello Min
    I'm curious was this the soft touch like where you can barely feel anything yet leaves most people
    feeling quite good type of "cranial" work or was this more forceful head and neck manipulation?
    I have never heard of the soft touch cranial work making people worse. There's always a first time I guess.
    Phil
     
  10. ukxmrv

    ukxmrv Senior Member

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    Gosh only 3 that's hard

    • Exercise - either as the original "exercise regardless of how you feel" or the more but just as lethal modern "exercise around how you feel"
    • Antidepressants
    • Antibiotics

    and many different supplements, common prescriptions drugs and alternatives therapies
     
  11. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    In my moldy house, four things that made me MUCH worse were:

    * Antivirals (just a small amount of Famvir made me much worse, for many months after I stopped the drug)
    * Antibiotics (15 mg of doxy made me deathly sick with psychotic symptoms)
    * FolaPro and B12 (the amounts in Rich's protocol got me into the "Adverse Effects" section of his paper)
    * Cholestyramine (a small amount gave me a reaction similar to the one I got from the antibiotics)

    Ironically, these are the things that turned out to be responsible for getting me to where I am now (almost totally well). But to benefit from them, I had to use them in a good environment (for a while it was literally tent in the desert).

    Eventually I started being able to benefit from large amounts of these things -- 900 mg of Valcyte + 1000 mg Famvir, several packets of cholestyramine per day, 400 mg of doxy per day, 15 mg of Deplin and 10 mg methyl B12 shots per day.

    So I would suggest that if people cannot tolerate treatments that in theory should help them, they consider whether their environment might be an issue that's preventing them from benefiting.

    Best,

    Lisa
     
  12. ukxmrv

    ukxmrv Senior Member

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    I did Lisa and it didn't work or make any difference at all

    We are all different and what worked for you may be no help at all for others

    That's one of the many frustrating things about ME and CFS.
     
    Waverunner likes this.
  13. slayadragon

    slayadragon Senior Member

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    Yes, we've had this conversation before, ukxmrv.

    From what I've heard of people who have done well with avoidance in the U.S. and then visited or attempted to live in England, the entire country counts as an "environment that's an issue that's preventing them from benefiting."

    This sounds absurd, but I can't do anything about that. The world is what it is.

    Obviously, not everyone in England who has CFS can move to other countries. And I doubt that environmental cleanup can remedy the problem to the point where people with severe M.E. can feel much better there either, even if huge amounts of money were spent.

    What I increasingly do think is that the route for people to get really well from ME/CFS is through effective detox. Pathogen killers can help in some cases (there certainly are a lot of bugs in this disease!), but it's becoming more and more clear to me that the reason that the bugs are such a problem is because our bodies are poisoned to the point where our immune systems don't function. If we can get the toxins out, the pathogens come under control much more easily, in my experience and observation.

    So one of my main goals in trying to draw attention to the environmental aspect of the illness is to get to the point where we can get scientists (including drug companies) to help to develop means by which people can detox from this illness more easily. This seems to me like it is not an unreasonable goal -- drug companies can do wondrous things if they put their minds to it. But in order to make that happen, there's going to have to be a basic change in mindset: from "pathogens are the cause" to "toxins are the cause."

    The more I learn about this disease, the more I wholeheartedly disagree with the concept that "We're all different." All the people I've observed so far who have tried mold avoidance (rigorously following the "instructions") have reacted in extremely similar ways. I'm open to the idea that there may be exceptions, but I'm not seeing any of them.

    If I had tried to get well in England, I'd still be deathly sick. That's a scary thing, but it's important to know.

    Here's an article that talks about the mold situation in the UK, and I think it barely scratches the surface of the problem. If we think about reasons that the UK government might have to try to cover up ME/CFS, this would be a really good one -- it would bankrupt the country just to address the blatantly moldy buildings, never mind to try to help people who already have been poisoned by them.

    http://www.hvnplus.co.uk/news/camfil-uk-launches-indoor-air-quality-campaign-blog/8622751.article

    It's a huge huge problem. Overwhelming and depressing. But not talking about it gets us nowhere, so I doggedly keep bringing it up.....

    Best, Lisa
     
  14. ukxmrv

    ukxmrv Senior Member

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    Hi Lisa,

    I have been lucky enough to travel and even live in other countries. It's still the same for me sadly. Tried the tent etc.

    For some of us the problem may be totally different than environmental and the challenges that you faced not applicable.
     
    Waverunner likes this.
  15. slayadragon

    slayadragon Senior Member

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    There are lots of places in the U.S. where I was not helped one bit by sleeping in a tent. The outdoor air in some places was just as problematic for me as the indoor air in the worst building I'd ever been in, and the contamination on some tents was problematic enough to keep me super-sick too. And some people take a lot longer to start to recover in a good location than others (depending on how weak their systems are, which bugs they have, etc.).

    This is an insanely complex situation, and I don't expect anyone to believe me about it. Just because I'm confident about it doesn't mean that other people need to agree, until we get more solid evidence.

    Best, Lisa
     
  16. hurtingallthetimet

    hurtingallthetimet Senior Member

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    not sure if i can put brand name of sleep medication but a i have insomnia really really worse after becoming ill...a popular sleeping medication made me hallucinate, angry, aggressive, id write angry emials, order same thing over and over, didnt know who family members were, linger outside etc etc...id have no memory of any of this..find the angry emails..or family would tell me aobut my going outside talking to people that werent there etc...very scary...

    doctor keeps telling me to exercise i do what i can which is not much, everyday too exhausted and too much pain..i was told though when first diagnosed the doctor didnt believe in fibro/cfs fully and thought was more in peoples heads i was told to keep jogging 5 miles a day...i usually did that or more when helathy..it just about killed me i to try it when ill

    vitamin d...i threw up something horribly but was told to take it to give energy or something....
     
  17. sianrecovery

    sianrecovery Senior Member

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    Manchester UK
    Made me worse? Pretending for years I wasnt getting ill and 'pushing through' - while I still could. Beating myself up for being able to bounce back. Sugar, when I eat stuff with sugary crap without doubt it makes me worse.

    Thanks for your post Lisa - I am also made worse by mold, and have just read the Shoemaker stuff. I live in the UK, and improve when I visit Arizona. But I retain hope that with a good mold protocol, I can get well here.
     
    L'engle likes this.
  18. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    I will keep my fingers crossed for you, sianrecovery. Please keep in touch and let me know how you're doing -- I'd really like to know.

    Best, Lisa (lisapetrison at yahoo)
     
  19. Clodomir

    Clodomir In hibernation mood

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    Belgium
    - antidepressants (venlafaxine). Now that I have stopped, I feel so much better!!!

    what make me sick was vaccine against flu!
     
  20. LBS

    LBS Senior Member

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    Sacramento, CA
    I can't think of three things that actually made me worse, but there are two things I recall taking at some point which did.

    1. DHEA
    2. Hormonal therapy in the form of birth control pills

    I ran out and bought DHEA a few years ago after reading about its health affects, and after several days of trying it, I could barely function. It made me so much worse. Same thing when I went on birth control in my 20s (I'm 52 now). I couldn't take it.
     

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