My bio

Discussion in 'Fibromyalgia Main Forum' started by kimberly236, Apr 20, 2007.

  1. kimberly236

    kimberly236 New Member

    Hi all. I have been lurking here for quite some time, and have posted a few messages. I never formally introduced myself to you, though.
    This morning I posted my bio on my profile, and thought I would put it here too.
    This is such a great and helpful group of people. We understand what each other is going through, unfortunate as it is.

    My bio:
    In 1998 I was a junior in college and came down with mono. My biggest worry then was having to miss 3 weeks of school. If I only knew! I recovered from the mono, only to have a relapse a month later. This time it was BAD. Somehow I made it through my senior year, living at home, having my mom drive me from class to class on my many bad days. I was officially diagnosed with CFS by an infectious disease doc in 1999.

    I spent the next year at home, trying to recover but not making much progress. In 2000, I married the man I had been dating since 1996. (Thank GOD for him--he is so supportive and such a blessing.)

    In 2001 I started to see some improvement. The only meds I was on at the time was Celexa (an antidepressant). Over the next several years, my functioning gradually increased and my symptoms gradually decreased. I started teaching piano lessons, just 2 students at first, up to 12 students by 2005. I attribute my improvement to rest, gradually increasing my walking, good health habits, and time.

    Then came 2006. Having seen so much improvement (probably up to 75% of my pre-illness days) I decided to go to work part-time at an accounting office. (My college degree was accounting, and I had always wanted to work in an office. You know, try to feel like a normal person.) At the same time, my husband was going through a crisis at work and we were comtemplating a major job change for him. Between January and June, my physical and emotional stress kept piling up, and my health started to decline. I foolishly ignored all the warning signs, so desperate to be living in the land of the well. My husband's job situation resolved, and I finally quit my part-time job in May, but it was too late.

    June 12th I crashed. All my previous symptoms were back--crushing fatigue, sore throat, fever, vertigo, swollen glands, muscle weakness--worse than ever. I went to bed, thinking I needed a few weeks or month to recover. I was wrong.

    It's now been over 10 months, and I am essentially housebound, some days practically bedridden. I am at an utter loss as to what to do. There are no local docs I know of who know anything about CFS. I went to a doc about 90 miles away who supposedly has some experience with it. He has run all sorts of tests, and the only thing to come back is very high Epstein-Barr numbers, and also positive HHV6.

    Right now he has me on Valtrex 1 gram per day, Celexa, Trazodone for sleep, and B12 injections. We'll see what happens. I recovered before, hopefully I can again.

    As much as I HATE to see all of us so sick, I guess it is nice to know we are not alone.

    [This Message was Edited on 04/20/2007]
  2. suzette1954

    suzette1954 New Member

    couldnt read all of your post. For those of us who are really bad, I cant read long posts with out putting them in different paragraphs.

    I hope you will recover too. I pray that for all of us. This is a wonderful site and Im always amazed how helpful everyone is.

    God Bless,

  3. kimberly236

    kimberly236 New Member

    You're right--I know exactly what you mean about long posts! My eyes start to lose track after a while, especially when the vertigo sets in.

    I separated it into more paragraphs.

    Thanks for the reply!
  4. Slayadragon

    Slayadragon New Member

    Hi Kimberly,

    Thanks for sharing your information.

    Who is your doctor?

    1000 mg of Valtrex is a pretty low dose, although many doctors believe it's a good idea to start there in case you have a large die-off reaction.

    From what I've noted, getting lasting improvements with Valtrex seems to require a larger dose (3,000 to 4,000 mg) and an extended time on the drug (six months or more).

    My own doctor's strategy is to use Famvir ( a similar drug to Valtrex) to kill some viruses, then switch to Valcyte (a stronger drug) to attack the rest. You can read the basics about what I've been through if you click my name (to the left of this post) and read my bio.

    There are a lot of people here who have experience with antivirals, and so please share your experiences. More specific questions tend to get better responses than more general ones, though.

    Good luck!

    Best, Lisa
  5. richvank

    richvank New Member

    Hi, Kimberly.

    I'm sorry to hear about what you have been going through.

    Based on what you've reported, I think that you might be a good candidate for being helped by the simplified treatment based on the glutathione depletion--methylation cycle block hypothesis for CFS. This is new, and it seems to be helping quite a few people on this board who have CFS.

    You can read about it in the threads that have "methylation" in their titles, particularly the one with "Perrier" in the title.

    This treatment is pretty inexpensive, and I think it actually has the potential to be a cure for CFS. There are no drugs involved, and you can do it yourself. I'm not selling anything, am not exaggerating, and this is not a hoax. This is a new treatment, based on a new understanding of the root causes of CFS.

  6. kimberly236

    kimberly236 New Member

    Hi all. Thanks for your responses. Rich and Lisa...I posted questions for you under new threads entitled "Question for RichVank" and "Question for lisapetrison." Thanks in advance for your help.
    Elaine, you are right. Finding a good doctor is SO important, an issue I am really struggling with now. When the 1st 2 you try just want to give you an anti-depressant (without even asking if I'm depressed!) and the 3rd says taht CFS patients are over-medicated (even though when he said that I was only on one low-dose med) it's tough.

  7. jole

    jole Member

    Sorry you have to have this so young. There are several your age on the board, however, so you will find people with lots in common.

    This is a very caring and informative place to be....hope to see you often.

    Friends - Jole

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