Hello Everyone Checking in after months away....

Discussion in 'Fibromyalgia Main Forum' started by rileyearl, Jun 30, 2006.

  1. rileyearl

    rileyearl New Member

    I recognize some familiar names and am happy to see you here. And so many new ones--it's a good sign you are not listening to the people who say less than understanding or kind things.

    What spurred me to write was that I got fired from my regular MD yesterday! I was ready for it after reading about it happening so many times here.

    I've been going to the FFC near Seattle since last August and can honestly say that I'm better most of the time due to their treatment. Also true is that I take time-release morphine and Provigil everyday to keep moving and work.

    Those two drugs were the reason my doctor fired me--right after scoffing at or possibly ridiculing me. The reason I went to him is because I need to get a referral to a rheumatologist named Andrew Holman, which he did make. I have an appointment for October 2.

    I'm just flat out of money to pay at the FFC. The next treatments they suggest are Human Growth Hormone or Famovir and both are at least $600 a month. I have Epstein Barr Virus, Chlamydia Micoplasma and Chlamidia Pneumonia. The blood work shows improvement in the second one, but none in the other two. My hormone levels, which were nearly depleted, have gone up and I'm still taking supplements to keep them going. And, finally, after telling doctors for 25 years that there is something wrong with my thyroid levels, I'm taking a compounded T3/T4 thyroid pill made out of plants. The last two months I've had a gammagobulin shot at the beginning of the month. It makes me feel lousy with herxing the first few days, then I feel good for about 3-4 weeks. Feel good! That's the goal right?

    June 12 I flew to Las Vegas to meet a friend and attend the eBay Live gathering. The trip was a real eye opener. I couldn't walk to the next hotel, where the events were, and back to my room without extreme pain. I'd have to stop every few feet and sit down on the last stretch to my room. I never thought I'd get tired of slot machines, but I did. The eye opener is that I was ready for a wheelchair. If I don't get a whole lot better soon, I will be shopping for one. I don't want to be left out of everything for the rest of time. Grrr!

    Lynn, are you still here? You are still my role model, but you must have different viruses or infections than me that you were able to ride horses and dance. (Or maybe just a nicer husband! <g>)

    So, enough whining. I'm looking forward to a good read here and wish you all a little energy and a few pain-free hours today.


  2. hugs4evry1

    hugs4evry1 New Member

    It's good to see you back again!!!

    Just popped on right before I go to bed so I won't be too coherent, just wanted to say hi.


    Nancy B.
  3. kellyann

    kellyann New Member

    I go to a FFC near Atlanta for tratment. I just got on Famvir for Epstein bar,CMV,Mycoplasma,Chlamydia pneumonaie,etc...The only way I could swing it was to go to my primary care doctor and convince him to write me the precription for it and for Mepron. I tried the human growth hormone, which is in a sleep medicine, I really hate it. I sleepwalk too bad on it. Really it is awful. Xyreme, I believe it's called.

    Sorry you had such a hard time at your ebay meeting. I know what you mean about needing a wheelchair. I am at the point of nearly needing one too. It makes you feel so hopeless or rather helpless? I don't know. But welcome back, and I am glad to see you here!

  4. kgangel

    kgangel New Member

    I remember you from a while back. You had gone through some very painful times with the loss of your dad I believe, is that right?

    I am glad to see you back on here. I am usually not on much any more have had some other problems along with FM that have been giving me a hard time.

    I am glad to see that you have Gone to FFC, I know what you mean about how much they are, it is too bad too? Do you have insurance that may help you pay for your treatment there?

    Wish you were doing better, but glad to see you back

    May you have more painfree days as well

  5. rileyearl

    rileyearl New Member

    What a treat! Nancy and KGAngel thanks for your warm wishes! Nancy, you are in Australia? Is that right? Where it's night and wintertime. It's a wonderment!

    Kellyann, it sounds like we're on the same track. How long have you been on the famovir? Do you think it's helping? Have you seen any blood tests that show improvement? How about on the infections? Any improvement? I better start shopping for a new doctor, so I can get those prescriptions written.

    I was also wondering if you have tried Gammaglobulin shots for pain at the FFC?

    I'm sorry to throw so many questions out, but I'm getting so frustrated with how long the treatment process takes. Sometimes it feels I'm doing a drug trial for some pharmaceutical company--especially when something costs a lot with no positive results, like the first round of anti-viral IVs.

    If I have to get a wheelchair, it's going to be either bright red or orange. And it will need a little basket on the front for my little dog to ride in! How about you? What color?

    Take care,


  6. Mikie

    Mikie Moderator

    I saw your response under my Red Tide post.

    Love, Mikie

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