Im doing much much better.

Discussion in 'Fibromyalgia Main Forum' started by sscape, Jan 26, 2010.

  1. sscape

    sscape New Member


    I remember that people complained that they never heard success stories. Here is one. (no Jinx- God not jinx.)

    I've had bad bouts with ME/CFS twice in my life. First one took three years, second one took ten years.

    I was one of the very fortunate ones who responded to Valcyte. I know that it is rare that people respond to it. I know I am very very lucky. I also know CFS/ME may come again one day.

    I just want people to know that you can improve significantly. Im planning a short ski trip. I've been to Disney World (SOO overated!) and I have to get a substantial job. Im about 80% more or less. That is amazing.

    There are promising things on the horizon. One day they will get a handle on this mess. Hopefully in the near future. I remember laying in bed and wondering if I would even get out again. I did. I'd like to think I'd have the internal strength to find meaning even if that had not happened. I don't know. This can be such a hard road.

    Find value where ever you are. I wish you health

  2. rockgor

    rockgor Well-Known Member

    Glad to hear the good news. Was Valcyte entirely responsible for your improvement
    or were there other factors?

    Good luck in your job search.

  3. sunnyslumber

    sunnyslumber New Member

    Great for you! Like was already mentioned do you attribute your improvement entirely to the valcyte or were there other medications, diets, vitamins etc. that you changed up and think probably helped?

    CFS is terrible as you know so I am glad you are experiencing that light at the end of the tunnel.

  4. Elisa

    Elisa Member

    Thank you so much for posting.

    Is is so great to hear when someone gets better.

    It helps restore lost hope.

    Thank-you for helping us all be more hopeful and showing us that we can get better someday!

    God Bless,

  5. m1she11e

    m1she11e New Member

    Can you tell us how long you were on Valcyte and what kind of dose? Also, did you get real sick before you started to feel better? AND, how long have you been feeling better?

    I have been asking around lately about Valcyte and was wondering if anyone was even trying it anymore.


  6. vleigh

    vleigh New Member

    I have suffered with FM for years, but have never heard of Valcyte. Can you tell me what it is?
  7. m1she11e

    m1she11e New Member

    Valcyte is an anti viral drug that got a lot of press about a year or so ago. It is used for HHV6 and CMV. Some people have amazing results if they have one of those virus' on Valcyte.

    It is a very strong drug and you have to have your liver and immune system checked weekly or bi-weekly.

    There is plenty of info if you google it or put it in the search on this board.
  8. sscape

    sscape New Member

    Im sure I am better because of Valcyte and Low Dose Naltrexone. LDN may work alone to improve people. Health seems to increase health.

    A fair amount of information I received or found reference to in

    This lady has CFIDS and has two young sons with CFIDS. She has a lot of experience with it. She had a bad experience with Valcyte, and is now on LDN.

    I took Valcyte and felt I would have a possible good response because I started this miserable journey with Mono in the early '80s. I took Valcyte for a year or more. I felt a lot worse for awhile. It's really really strong. Then when I felt I had risked enough and felt better I quit. I found I started to get little bits of illness here and there. Valcyte is potentially deadly. Use only under a strict schedule of test with a good doctor. I cost a fortune! I mean a fortune out of pocket! Wiki has a great bit of info on Valcyte. I think that there is a possibility that certain strains of CFIDS respond, but IDK> Mine did. They have the dosages and stuff here

    I started taking Low Dose Naltrexone. I admit the LDN is a bit crazy. There is no real information on how it works. However- I take 3 units every night and if it doesn't get into my pill pack I start getting sick. I do take Trazadone for sleep and an SSRI for depression/maintenance. LDN must be special ordered from a compounding pharmacy and it must be a specific type. Try the wiki site first

    Study abstract
    ""Fibromyalgia Study at Stanford Successful. -snip- The drug was found to reduce symptoms of pain and fatigue an average of 30 percent over placebo, according to the results of the study published April 17 online in the journal Pain Medicine. "Patients' reactions were really quite profound,"

    (( The therapeutic dosage range for LDN is from 1.5mg to 4.5mg every night. Dosages below this range are likely to have no effect at all, and dosages above this range are likely to block endorphins for too long a period of time and interfere with its effectiveness.
    > IMPORTANT: Make sure to specify that you do NOT want LDN in a slow-release form (see above))

    Oddly enough, being well is stressful, too. I worry about relapse all the time. When should I, and in this economy can I, get a part time job. I also have ten years of really really bad housekeeping to make up for. You just cannot get over it in a year since I quit the Valcyte and was doing better. It took time to reprogram yourself, and now I need a new program, not like the old program and not like the original program.

    I recovered from CFIDS once before. It could strike again. I lost 3 years the first time. Ten years the second time. Im going to try to enjoy this good time as much as I can.


    cal/mag=for headaches

    B2- for migraines

    1000x2 fish oil


    Low Dose Naltrexone- 3units PM

    Trazadone- 100 to 200 PM as needed. Gone without recently!!

    Prozac 10units AM- may quit but prob not.

    Hope this is clear.

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