FFC Dallas - My Update - a little long and rambly :-)

Discussion in 'Fibromyalgia Main Forum' started by intrigue, Jan 12, 2006.

  1. intrigue

    intrigue New Member

    Hi Guys,

    I had my fourth FFC visit about three weeks ago. This one was mainly a check up on my treatments. I've completed 11/12 viral plus IV's to combat Epstein Barr, and I've been taking Famvir, Doxycyclene, and Transfer factor for the epstein barr and mycoplasma.

    ONLY ONE viral IV left to go .... yay!

    I've had really bad herx reactions in the last month. Abdominal pain like I've never felt before, diarrhea, and being sick to my stomach. Sounds fun doesn't it? I celebrated christmas morning with some upclose time with the commode.

    At my last appointment, we re-ran a basic CBC to see how my organs are handling all these meds. One the indicators of liver function was a little elevated. Also, my "absolute eosinophils" were highly elevated (which can be an indicator of an internal parasite). So ... Dr Kippels wanted me to see a GI doctor.

    I saw the GI doctor yesterday. I am not having nearly the problems I was a month ago, but I thought it best to get check out. The GI doctor was very nice. He is also a specialist in Interal Medicine. He seemed interested in fibromyalgia. Of course, he wanted the story on all the meds I am taking.

    He seemed to believe the problems I was experiencing were caused by all the meds. Nonetheless, he wants to check me out ... which of course means a colonoscopy.

    Now, it was all I could do to tolerate the IV's at the FFC. I've never been hospitalized .... I've never had major surgery. I'm just plain a big huge baby.

    So I am scared to death to have this done. I also wonder if I "really" need it .... or if I could put it off.

    As far as the FFC treatments, I think I am doing pretty well. When I feel good ... I feel great. When I'm herxing, I feel like I'm dying. The good news is ... there has been fewer and fewer bad days.

    Now ... I just have to figure out how to survive this colonoscopy .... *sigh*




  2. jane32

    jane32 New Member

    I was doing the standard Iv's (four) and had an increase in energy for like a day or two but that was it. I may start them up again later down the road.

    I have yet to have the antiviral IV's? You guys have done a lot? Did you herx from them right away? Do you think it is worth it?
    I hated getting the other ones-I felt so gross afterwards.
    They didn't really push how many I had to have so I figured it may not really be doing that much.

    How long have you been treating the EBV? Have your levels changed?

    Thanks for the update.

    Sorry about the colonscopy-I have had a couple myself-no fun but I did do it without any meds this past time-I was deeply relaxed with guided imagery and lack of water!!!! I know it sounds crazy but I believe strongly in mind over matter.
  3. intrigue

    intrigue New Member

    They prescribed 12 viral plus IV's for me to treat epstein barr. They suggested most people have the most trouble with 7-10. I didn't have problems until # 8 ... and it hit me like a bus. Instant flu symptoms.

    I get the Viral Plus IVs. They have anti-virals in them plus nutrients. You actually feel pretty good after you get one. (The viral plus IV's are yellow, the super viral IV's are clear) (Seems to vary from patient to patient which one they prescribe)

    As far as whether I'm glad I've done it .... I won't know until we test me again to see if its working.

    I have to say the nurses at the Dallas FFC have been GREAT! I can't say nice enough things about them.

    I've been on anti-viral treatments about two months now. I go back in for my next appointment on Feb 1. I expect they will recheck my EBV antibody levels at that time.

    I'm really freaked out by the prospect of the colonoscopy. Any words of comfort for me? ... Anyone? :)
    [This Message was Edited on 01/12/2006]
  4. zoemurr

    zoemurr New Member

    I was terrified too.. cried like a baby. Then they put me on the table, and I remember NOTHING. I don't remember coming out of it, going to the car, picking up the kids, or coming in the house. I went upstairs and conked out. Woke up the next day and all was well. I had no pain or gas afterward. I hope yours goes the same way. I would do it and get it over with. It means you don't have to do it again for 10 years. (You even get pictures..) yuck.
  5. Pianowoman

    Pianowoman New Member

    Don't worry too much about this. The worst part is the day before when you have to clean out and not eat much. The procedure is very short, about 15 min. and they give you drugs to relax you. Depending on the drugs they use, many people have no memory of the procedure at all!!
    Really, there is no pain and I felt fine afterwards. I slept that afternoon but I could eat normally.
    Most of the problems with colonoscopies are the worries we have beforehand.
    Do it soon and get it over with.

    Kathy.
  6. yesnettv

    yesnettv New Member

    Ask for one! It is with some kind of scan.
  7. ldbgcoleman

    ldbgcoleman New Member

    If you have low Nk cell activity you are more succeptable to cancers and this will rule out colon problems. It really is not that bad. I went to a woman that my two friends had gone to first so I knew what to expect. The actual procedure was a piece of cake. The drinking stuff the stuff and not eating was the worst part. You will be Ok.

    so glad you are feeling better. You are on the road to getting your life back now! Take Care Lynn
  8. bpmwriter

    bpmwriter New Member


    sorry, no experience with the colonoscopy, but i'm sure you'll be fine. i'll be very interested to hear your EBV numbers when you get retested. so far, i haven't heard much from people who've really stuck with the anti-virals and how radically did affect their numbers. i know subjective symptoms are the best indicators (feeling better is good!), but a change in the titers would assure me of a relationship between the numbers and the treatment which i've always wondered about. so please share that info with us when you have it.

    glad you're feeling better,
    eddie
  9. jake123

    jake123 New Member

    They gave me Fentanyl and Ativan - just enough to put me out but if they shook me and called my name I would wake up. I had absolutely no pain for about 3 days after effects from the Fentanyl. It was glorius to be sure.
    I told my PCP and he said Well I won't write a prescription for that in my lifetime.