FFC update 9/26/05

Discussion in 'Fibromyalgia Main Forum' started by lilbird, Sep 26, 2005.

  1. lilbird

    lilbird New Member

    I had my 4th Dr. visit today with the FFC in Los Angles.

    I am testing positive for HHV6, EBV and Mycoplasma Pneumoniae. He wants me to start taking Valtrex, TF 6000, and an ABX. He also wants me to pick up oregano oil.

    This of course in addition to all the other hormones and suppliments I am already taking.

    I am a little worried about starting the TF,Valtrex and ABX all at once. He said to go ahead and take all of them, but I may start the valtrex and ABX and add in the TF in the future.

    I am having a hard time finding information on what the spicific TF factor's target. Can anyone tell me about the TF 6000?

    I have been herxing on the Cumanda and Samento to treat the Lyme. Most days are not to bad but every once in a while I have a really bad day and spend most of it in bed or on the potty. I talked to the Dr. about it today and I am going to just keep going with the treatment. I do have a feeling once I add the TF, ABX and antiviral it may get worse.

    I have been gaining weight sense I went on the hormones. He thinks it may be water gain from the estrogen. We are hoping that once things even out I will drop back down to my normal wieght. I hope so. I know I need to concentrate on getting well and a few extra lbs shouldn't matter, but still I wish I would have lost instead of gained.

    He also would like for me to start taking walks if I am up to it. I really enjoy walking so I may start this tomorrow.

    One other sugestion was to get the book for the South Beach Diet. He said that this really is the best diet and we should eat like this all the time not just to lose weight.

    My next appointment is in 8 weeks.

    Cathy
  2. MKlady

    MKlady New Member

    I have my second appointment with FFC Las Vegas Wednesday. Good luck with your treatments - it ain't easy to get well, but being sick is no picnic either!

    Mary
  3. lilbird

    lilbird New Member

    I am on the Burbur. It does help. The paper the Dr. sent with it said I could take up to 8 dose's a day. If I take my first dose and I am still not feeling well an hour after I can take another dose.

    I think most of us are going to go through a rough time in the begaining. I just wish I could have started with the FFC last year sometime while I was still on my state disability. I have exaused that and my federal disability won't pay enough to bother trying to get it. So I am having to work some now. Its hard at times.
    Thanks for your thoughts.
    Cathy
  4. onedaymagpie

    onedaymagpie New Member

    Lilbird: I think it would be okay to space each item out by a couple of days, in case you happen to get any reactions, then you will know where it is coming from. In fact, that was what the nusre at the Center told me to do, to start only one thing at a time, wait a couple of days to see how you do, then start the next. Just a thought.

    I like that he is talking to you about taking walks. I think that is a good sign and many doctors would never cover something like that, but walks can be so important for mind, body, and spirit. Thanks for the update.

    I see him next week for my 4th apptmt as well.
    big hugs, Maggy
  5. lilbird

    lilbird New Member

    I think spacing the meds out is very good advise. I think that is what I will do.

    Make sure and let us know how your next visit goes.

    Cathy
  6. rileyearl

    rileyearl New Member

    Hi Cathy,

    Thanks for the update. It sounds like you're feeling kind of crummy right now. Hopefully it won't last too long.

    I'm going for my 3rd visit 10/12 to the FFC in Seattle. I'm just a little behind you in the process. I get the virus results next time.

    I think the hardest part for me will be the change in diet, getting decaffeinated and exercise.

    Are you taking the Gamma Grow HGH? I just started it and it seems to make me tired. How about you?

    Thanks again! Take care!

    Francie
  7. lilbird

    lilbird New Member

    I am not sure what HGH I am on. It is a shot and comes from the compound pharmacy that they use.

    I picked up my antiviral and my ABX today so I will start that this evening.

    I also went to the health food store and got oregano oil, maybe I will start that in a few days. I am on so many different meds and supplements right now I am tring to figure out what time of day is best to take them. I need to get a larger pill holder.

    Cathy

  8. pumpkinpatch

    pumpkinpatch New Member

    Thanks for the update.

    What antibiotics are you on? I'm on the 3 doxy and today cut the biaxin in half after eating. Just had one half.

    I'm having the same problem spacing everything out during the day. I learnt the hard way that I can't take 2 doxys at once. I feel terrible immediately.

    I'd hate to add up how many supplements, vitamins, meds I'm taking per day. One thing I've notice is I feel better in the evening and my appetite picks up later on.

    Boy you need a stomach of steel for all these and the dyflucan isn't cheap.

    Just to let you we're in this together and I'm still determined to see this through. One thing my hormonal levels have really improved but the infections will take time.

    Are you still taking Dr. T's daily drink? I just ordered another one through this site's store. Cheap this week. Check it out.

    Cindy
  9. lilbird

    lilbird New Member

    Are you feeling any better? I went camping with about 20 family and friends. It was really nice to spend time together. My kids are in there early 20's so its really hard to get them all together, but they were all there this weekend. Anyway it kicked my butt. I'm glad I went but I'm paying for it now.

    I'm on Cipro, 500 mg 2x a day. And the antiviral is Valtrex, 1GM 2x a day. I have to pay out of pocket for my perscriptions and then my insurance reimburses me. The Valtrex was $500.00 for a month supply. I will get most of that back but still that hurt.

    Cathy
  10. lilbird

    lilbird New Member

    Thanks for the heads up on the end fatigue. I am still taking it and need more. I will place an order tomorrow.

    Cathy