Has anyone ever participated in clinical study?

Discussion in 'Fibromyalgia Main Forum' started by kjan9, Sep 7, 2003.

  1. kjan9

    kjan9 New Member

    Hi all, I recieved THE CFIDS CHRONICAL yesterday. (free if you sign up on the website) And since I live about an hour and half to Los Angeles I decided I'd look into it more and sent and e-mail to Dr.Freidman. goodhormones doctor. An endoctinologist. So I thought it would be interesting to hear from those that participated and their experiences, what drugs ect.
  2. kerrymygirl

    kerrymygirl New Member

    Will go through just a couple of them.

    1. I did the Bowen Treatment it was quite non invasive, hard to explain. The say we are like a expensive violin,lets say, that is out of tune and needs to be refined, tuned. They put you in quit dark room. Put on music from the kind of nature you enjoy. Roll over certain area`s of body. When they rolled over my occipital nerve regoin. Caused me a 5 day cluster headache almost went nuts, if I am not enough with this DD. Anyway I did go back for my 3rd treat. and told them to stay away from occipital. This time right on the way home I started to feel more energy. In the study I was hooked up before and after on machine showing energy levels. I went from 300 before treat. after 1000.BTW, all the people I knew got headach after hitting the occipital area, all said hands off. Not as bad as mine but did get migraine or headache.

    It lasted almost 2mo. I almost felt like I found someone I lost for a very long time. Knew I was not well. But my pain and fatigue and some other symptoms lessened it was great!!

    If I could afford would do Bowen.

    2. Took a natural herbal sub. To get deep sleep. Had so wear a box to moniter me on my head for 3 days. That was cute,hmmmm. I took what is called Renewtrient. Said it was not GHB. Well, it turns into that after ingested. This was suppossed to be in medical journel. 1 night I took only half dose. Thank God I immediately through it up after I drank it. I tripped was so bad for hrs. I could not even find phone to call for help. Too long to go into, This was suppossedly totally natural and safe. Safe for WHO???
    I was really scared being alone. I think I came close to that light....????

    3. Test for effexor lowest dose was sick for 3 days.

    So you do have to be careful. Lord only knows if I did permanent damage with this All Natural Safe HA>>> substance.

    I have done some others. I have stayed away for now been too sick.

    Have been asked to do the malnicipran??? final studies.
    I am not sure about that....

    Hope this is what you are looking for...
  3. kjan9

    kjan9 New Member

    SOmeone is supposed to call me back! viagra for cfids?
  4. kjan9

    kjan9 New Member

    I lol when I read "I tripped hard" about the all natural supplement you tried. I know I've heard of Bowen, but will hit search to find more out. I don't know if I can leave my pain meds alone to try viagra for gods sakes the ad said Brain SPECTS, tilt table testing and hormone measurements and treatment studies to reduce fatigue. And what if they give me the placebo instead. I don't stand a chance to releive any cfs symptoms at all then. How much do they pay? guess I'll find out when they call me. I'm still lol at the whole idea!!!

  5. AJME

    AJME New Member

    Dear Kjan,

    I've particpated partly. I did the first part to see if I quality for TMJ/FM study.

    The second part involves being put under distress and the doctors measuring the cortisone levels in your blood. One scenario would be debating an issue. There were 2 other scenarios and I think 1 is resting. A total of 3 draw withdrawings of blood to check for cortisone levels.

    I haven't finis the 2nd part of test cause basically I would need to be off my antidepressant for this.
  6. bsyounges

    bsyounges New Member

    i start on tomorrow, 9/9/03, at Washington Hospital Center in DC. Not quite sure of all involved. I wrote it down but my not taking ability isn't what it use to be. It will include a physical, a lot of cognitive tests, a PET scan and i'm not sure what else. I'm your FM lab Rat de juer.
    I'm a little paniced but I'll be fine.
  7. kjan9

    kjan9 New Member

    Yeah, I got home to find a message on my machine. Dr. Friedman's associate was following up with me, it appears my E-mail messages sparked I'd be a good candidate. I had'nt called them back. Still don't know how much compensatition. Guess what bothers me most is that I have a 50/50 chance of getting the placebo, then they'd be no chance in hell of getting any relief. It would also depend on the duration. However if it were to be an effective drug for me, I do know it is something I can get, even if I had to fight for insurance coverage, it isn't likely to be pulled from the market.
    Decisions, decisions.
    Kerrygirl you make me laugh, I like your spunk
    Fibrofog research in washington let us know how your doing on the study from time to time. What are they testing you with? any drugs involved? or is it tests and evaluation only?
    see ya