I am still alive!!

Discussion in 'Fibromyalgia Main Forum' started by Gothbubbles, Jun 26, 2011.

  1. Gothbubbles

    Gothbubbles New Member

    Some of you board vets may remember me, I was very active in 2006 and 2007!!

    I had to stop posting because I got too sick. I suffered a terrible movement disorder (myclonus) and an unbearable amount of fatigue.

    I want to report that I am ALL BETTER.

    This is much better than I was last time I posted http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=1077268

    and this


    If you do a search under my name you can see what I was going through.

    I was diagnosed with lyme disease (huge surprise because I gave up on doctors and I had already had SIX negative lyme tests). I had the western blot through igenex and I got my positive on DEC 2 of 2009.

    I started with 100 mg doxycycline 1x a day and herxed so bad I thought I would die.

    After a month or two I herxed less and moved up to 100mg 2x a day.

    After a month or two again I hexed less and moved up to 100mg 3x day.


    Eventually built up to more, and after 8 months I could start living the way I remembered.

    I ate an anti-yeast diet, took nystatin, did physical therapy, and had a caregiver (I could not have done this without one!).

    I was so excited to HAVE MY LIFE BACK I went a little crazy :) By that I mean I jumped into school (always wanted to go back) and my first semester back took a full courseload and got a 4.0!!!!

    I have done many things since getting better, like argentean tango, DRIVING, acrobatics, and NOW I JUST GOT A JOB!!! :) A real job!

    I am glad I stuck it out and saw ONE LAST DOCTOR
    I am glad I didn't quit and kill myself (thought about it a lot)
    I am glad I made myself take doxycycline

    My myoclonus is GONE
    My fatigue is GONE
    My memory loss is GONE
    My cognitive problems are GONE
    My pain is GONE
    My psychotic mood swings are GONE
    My heart condition is now so mild I hardly notice it.
    My migraines are so infrequent I barely notice
    My life is BACK

    BAD news:

    My arthritis is bad, and hasn't improved with treatment. (WHO CARES!)
    I don't know how to be a person/adult/normal so I have to learn a lot of stuff all the time
    I get scared of old ghosts like exercise and staying up late (WHO CARES!)

    BEST NEWS: I HAVE MY LIFE BACK!!!!!!!!!!!!!!!!!!!!!!!!!!!

    Ask me anything!
    [This Message was Edited on 06/26/2011]
  2. elliespad

    elliespad Member

    I remember you VERY well!! You had a HORRIBLE time. I remember you posting a video and you had your picture in your profile. I am SO HAPPY you have regained your health. Imagine if you hadn't persisted with the Lyme tests. Thank GOD for your healing.

    I wish you a healthy and prosperous life and welcome to the world and adulthood. It's gonna be GREAT!! So truly happy for you.

    Who by the way treated you?

  3. earthdog2000

    earthdog2000 Member

    Hi and welcome back!

    I don't think we know each other though I was here in 2006 my memory and fibro fog is pretty bad! So happy to hear that you are doing so well and can enjoy life after being so sick for so long!

    I was off the board for almost 5 years due to losing a great friend I had met on this msg board. I came back because my life became unmanagable and I remembered being SO thankful to be here before. Well , I've been back for about 3 months or so and find that there are still wonderful ppl. here and it has helped me so much. I also enjoy replying and helping others here as they have helped me!

    Anyhow, enough about me, I'm so happy that you are back and that you can start a new, fresh and fantastic life. In reading your profile, you and my youngest son, 26 have SO much in common, too cool!

    I will reply back more later,
    Hugs and happiness, Julie
  4. Scapper

    Scapper New Member

    YAY FOR YOU!!!!!!!!!!!!!!!!!!!!!!

    Yes, I totally remember you -- I too remember your video and profile picture and your struggle.

    I have lots of questions so pleeeeeease check back.....I could use some "encouragement" right about now (having Igenex done in couple of weeks).

    I'm completely tapped right now but I'll come back tomorrow, but I sooooo needed to give you a shout out NOW :)))))))

    CONGRATULATIONS ON GETTING YOUR LIFE BACK......AND for coming back here and sharing this w/ all of us.......very thoughtful of you to "remember where you came from"......I admire that :)


    p.s. suggestion: you might want to put something re: Lyme in title so more people can see this......or perhaps the word "recovery"......people need to hear this from you!!!! I'M BLOWN AWAY!!!!!!
  5. ladybugmandy

    ladybugmandy Member

    congrats on getting your life back!!!!!

    i wonder if you have been tested for xmrv.....taking antiretrovirals might keep you from relapsing now that you are well!

  6. jo mooney

    jo mooney New Member

    You just made my day better!

    It is uplifting to hear someone getting better,staying the course and making it thru the
    hard times.

    I wish you well!!

    Thanks for sharing and giving us hope.
  7. jo mooney

    jo mooney New Member

    You just made my day better!

    It is uplifting to hear someone getting better,staying the course and making it thru the
    hard times.

    I wish you well!!

    Thanks for sharing and giving us hope.
  8. rockgor

    rockgor Well-Known Member

    Reminds me of Dickens' A Tale of Two Cities. The first chapter is titled
    "Recalled to Life".

    Hope things continue to go well.

  9. Gothbubbles

    Gothbubbles New Member

    I have a really good lyme dr here in VERMONT, and my doc isn't on the good docs list probably to avoid any legal issues.

    But soon Vermont may not have to worry, I think there are some people working to protect docs who treat lyme with long term abx.

    I'm 30 now, my profile is from before when I was still SICK.

    I am starting circus school now! I am learning the german wheel and handbalancing.

    One of my teachers at the circus school is a performer and she's 30 and says most circus people can work well into their 40's.

    I hope I can learn to do amazing things with my body I had only dreamed of before.

    I lost a lot of time so I just want to make sure I can do it before I'm too old. I think I picked the right thing!

    Also, you can email (Email addresses NOT permitted, per rules) me if you want my doc's name if you're in or near vermont.

    I think right now she's only taking new patients with fibro, lyme, MCS, CFS, suspected lyme; the hard stuff, you know?

    Thank you ALL for your support!!!!! You're all so awesome for saying such great things to me ^_^ I am so glad to hear from you all too

    Thank you guys for all your support
    [This Message was Edited on 06/27/2011]
  10. Yucca13

    Yucca13 Member

    It sounds like it really paid off to keep on being your own advocate for the best treatment.

    I hope all your dreams come true and you continue to feel so much better.

  11. Nanie46

    Nanie46 Moderator


    So wonderful to hear your great news!

    I also found out I have lyme 2+ years ago and I am getting much better.

    I can't emphasize enough to everyone that you cannot, and should not rule out lyme just because your test was negative.

    Testing is very unreliable for alot of reasons.


    Lyme is a clinical diagnosis based on history, symptoms, exam and labs...not just labs.

    Unfortunately 99% of Dr's do not know enough about lyme to know all of this and they see a negative lab test and tell you that you do not have lyme, leaving people sick and suffering forever.