1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS: In Free Fall Through the Looking Glass
Jody Smith continues to try to put into words the horror of the altered state that hobbles the brains of those with ME/CFS...
Discuss the article on the Forums.

A treatment that helps leads to other problems.

Discussion in 'Alternative Therapies' started by Misfit Toy, Jun 23, 2013.

  1. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    1,337
    Likes:
    1,077
    I have had this shot, which I explained a while back (3 years ago) for food allergies. It's extremely expensive. Like $300 a month expensive. It helps tremendously with my food allergies; for example, I have an awful rash and tomorrow when I get the shot, the rash with go away. Also, the feeling of absolute awfulness won't be so so bad. I have had to take a break from it for a few months.

    In that time, I have noticed a lot of things. For one, my food allergies are the most prominent symptom. The worst symptom that is really kind of ruining my life. But also, that the total histamine cascade is causing pain. Lots of pain.

    Also, I have noticed that I am not as empathetic on the shot. I don't have empathy on it. It's like I am missing a fundamental emotion. I am more black and white on it. So, it's helping my food allergies, but it's also ruining other aspects of my personality.

    This is not the first time I have noticed this with a treatment. Where something will help you, but cause horrible symptoms in other ways.

    Years ago I was on a vitamin protocol that was insane. Like 20 supplement pills a day. It helped with endometriosis and energy. I was able to go to college and work. However, it made me nuts at times. Lots of tyrosine and niacin along with NADH. I felt unbalanced, but it rid me of absolute to die for pain with endometriosis.

    So, you feel better in some ways and worse in others. It's a crap shoot.

    Does anyone else have this with treatments?

    I honestly feel like I am held together by tape. Like, yes, this shot tomorrow will put me back together in some ways, but will do damage in other ways. Why can't things just work all the way? What is it like for that to happen? Also, to have something work in the beginning and then just not work. That's another fabulous thing to happen to us CFS folks. Flowers for Algernon...that's how it is for us.
    golden and Tito like this.
  2. Tito

    Tito Senior Member

    Messages:
    281
    Likes:
    360
    I do know what you are talking about... The thing is that it is not possible to change something within the body without affecting the whole biochemistry of it. And this is because all these "treatments" treat some symptoms and not the cause.
    After 14 years of these so called "treatments" at extortionate costs, I decided to stop. I find it easier not to have that rollacoaster of feeling better/worse. I also save a lot of money. Unless you can work with some treatments, I think it is better to choose the mental state you like better, as after all, you need to be able to live with yourself and like the person you see in the mirror.
    golden and The Spitfire like this.
  3. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    1,337
    Likes:
    1,077
    Tito, problem is...I don't like either mental state. With the shot, I can function and have some sort of life. Without the shot, I break out in a rash that causes me to itch all over and I am too sick and honestly have more suicidal thoughts. Also, without the shot, I am on the computer constantly due to loneliness or because I am in bed unable to function and I can't stand that either.

    I agree with you a 100% but at this point...neither mental state is good. o_O I have just noticed that I seem to react to almost anything. Even the stuff that helps hurts. It's bizarre. I am at least glad that I am not alone.

    It's interesting. On the shot, I ponder and obsess about drama that is stupid. I overreact to people and what people say drives me nuts. Maybe I am wrong, but I think that is the case. Off the shot, I am too sick to ponder or overreact to people because I am hanging on by a thread and obsessing about my illness. Neither feeling or emotion brings joy.
  4. Tito

    Tito Senior Member

    Messages:
    281
    Likes:
    360
    Personally, the iller I am the less frustrated I am. The brain fog is such that I notice less the years and decades that go by. I am also more and more isolated, which means I am not in contact with people, hence less frustration from what they say/do. I think the worst state in that illness is the moderate one as you realise you are going downhill. Once you pass that level to severe you have less perception of your fall.
    Is there something you like to do? Watching comedies or playing some game? There are nowadays many movies on YouTube you can watch for free. (Type "full movie" in the search bar) it can help to get some distraction.
    moblet, golden and The Spitfire like this.
  5. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    1,337
    Likes:
    1,077
    Tito. Thank you. you just summed up how I feel. The more ill you are, the more you can't really care about others and their "crap" remarks. I am trying to decide if I can bare being this ill. I have to work part time otherwise, I will be out on the street. Right now, I can't work at all.

    I am watching a show right now, Dexter. I love Homeland to. I love this show. TV helps me more than anything. Also, I love a good book.

    You hit the nail on the head. "Once you pass that level to severe, you have less perception of your fall." Bingo.

    I have so much brain fog. You know what is so crazy to me? I am so sick that I am having a hard time with simple tasks like writing a check. For me, to do that is like a major accomplishment.

    Anyway, thank you for saying exactly how I feel.
    golden likes this.
  6. golden

    golden Senior Member

    Messages:
    1,570
    Likes:
    846
    Clear Light
    I was prescribed daily anti biotics for years for acne. This gave me severe side effects including systemic candidiasis . The side effects could have been M.E. too as its a bundle of botches. I think a detox and dietry plan is what I required .

    During that time I was 'treated' like I was on a merrygoround .... round after round failed to help. when i asked doc if anti -biotics were the cause she told me it was my fault !

    This delayed me looking into the situation for more YEARS.

    So to get off the anti biotics i had Ro-accurate. This cleared the acne up marvellous. Left me bed bound in the worst physical pain, all over...

    I dont like to try to remember how bad it was...

    And severly exasaerbated M.E. symptoms - stopped sweating, dry lips and eyes .....but i am grateful i didnt have the psychological problems associated with this drug.

    So , its like that game where symptoms pop up and you try to hammer them all back down....

    I cured the Candidiasis myself and have had no symptons since. Yay for me -

    I also stopped all prescription drugs. I had become drug intolerant and that information translated to the G.P. as a que to try to force more drugs my way. (drug dealer desperation eyes could be seen in him ha ha)


    Most supplements are a disaster for me. This baffles me.

    But I am best when just concentrating on healthy diet and limiting toxins. And when its feels good I throw in this and that whatever that maybe.

    Every aspect is one big pickle.
    The Spitfire likes this.
  7. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    1,337
    Likes:
    1,077
    Every aspect is one big pickle. Yes. And trying to explain this to anyone is insane. How can I explain something that even I don't understand?
  8. golden

    golden Senior Member

    Messages:
    1,570
    Likes:
    846
    Clear Light
    Right...

    (sigh )...

See more popular forum discussions.

Share This Page