Lynn,Sandy,Dalphia, FFC Atlanta

Discussion in 'Fibromyalgia Main Forum' started by Countrymom, Nov 12, 2005.

  1. Countrymom

    Countrymom New Member

    Hey guys,

    I have an appt on Monday 21st at 12:30. This is the visit when I find out about infections. My husband and I are planning on staying for an IV that day, spending the night and getting another IV on Tuesday before I head back. I think Sandy has an am appt on Tuesday and I know Dalphia comes in on Tuesdays normally. I was hoping to meet you all. Lynn too, you all have been such an inspiration to me to continue this treatment at the FFC. I am anticipating getting positive results back because I have been feeling awful after starting the heparin and now I caught my kids cold and spent the entire day in bed yesterday... (well I did get out of bed and go to the drive in for dinner with my family, my throat hurt so bad I just got a milkshake...not good for the yeast but I had to have it!!)
    Anyhow, I hope our paths will cross next week and we will get to meet.
    Thanks so much for all of your advice and encouragement,
    Dani
  2. karatelady52

    karatelady52 New Member

    Hi Dani,

    My appointment for blood work and viral IV is at 10:00 a.m. Tuesday morning. So I will probably run into you there! This is so exciting!

    The virus panel was the eye opener for me (and the lyme diagnosis of course). I figured I had those problems because, like you, I was so sick all the time.

    I'm bringing my heating pad this time. I'm always so uncomfortable in those chairs because the IV hurts so we have to put ice/heat on it and my back pain always kicks in. Brenda, said she has another patient who does that.

    I'll sure look for you when I get there,

    Sandy
  3. Countrymom

    Countrymom New Member

    Sandy,

    Great, can't wait to see you. I am going to bring my heating pad and bed buddy too so they can pop it in the microwave and I can use that around my neck!! Thats what has been bothering me the most!! Brenda is so sweet, the last time I went in for IV's , they were so busy that I had to lie on an exam table, it wasn't so bad for the most part but it sure hurt later on! But I was glad to not have to wait another hour or two for a chair to open up!

    I am pretty sure that I will be getting the viral IV for the first time that visit so I hope I do pretty well on it.

    Dani
    [This Message was Edited on 11/12/2005]
  4. karatelady52

    karatelady52 New Member

    Hopefully it won't be too busy when we're there.

    We're going to look like we're going to a pajama party!

    Sandy
  5. Countrymom

    Countrymom New Member

    Well maybe we should just wear our jammies too!

    hehehe

    Dani
  6. ldbgcoleman

    ldbgcoleman New Member

    I will try to stop in too! I met Dalphia and we had a great conversation and she is a lovely lady. It is wonderful to put names with faces and meet you all. Anyone else on the board who goes to Atlanta chime in! See you soon Lynn

    PS They will be thrilled I already stop in and drive the staff crazy! L
  7. JansDad

    JansDad New Member

    Will be bringing my daughter for appointment on Monday, Nov. 14 @12 noon.
  8. Countrymom

    Countrymom New Member

    Good luck with the appointment and let us know how it goes!!

    Dani
  9. BethW

    BethW New Member

    Hi Lynn,Sandy,Dalphia,
    It is so good to hear that all of you are meeting next week. My 1st appt was Oct 24. We have a son there we visited, but drove from Alabama. Two days after I went for my 1st appt, I developed a severe ear infection (maybe bacterial.) Because of that, I wasn't able to start anything but the vitamins and the strong antibiotic caused some stomach problems toward the end, but I need to cut the End Fatigue down a big too. Started NT Factor. I have been sick 14 yrs and am older but have a lot of hope about the FFC. My only doctors here who believed in the disease retired or moved out of state so it is good to be treated with respect and belief. Wish I could join all of you. Because of the month of not taking antibiotics before getting the mycoplasma test, I changed my appt to middle of Dec. There are so many questions I have and wish we could all talk more and in more detail. My IV was one of the creamed corn ones and my pain was much less that night (especially my hips) and for two days after and graually came back. I do think my energy level is increased some and pain a little less, but then antibiotics make my pain less and Fall season helps my fatigue a little so don't know direct cause and effect yet. Everyone here was very helpful to me before my 1st appt when I was apprehensive.
    Let me know how your appts and if you get to meet each other. Thanks for all your messages and encouragement.
    BethW
  10. karatelady52

    karatelady52 New Member

    Hi Beth,

    I hope you are feeling better from your infection.

    Like you, I've been sick a long time. I think I've had lyme disease for 30+ years and was probably reinfected at some point which made it worse.

    Maybe we'll run into each other in December. What day is your appointment?

    This board has been wonderful for me also. I've learned so much from everyone. See you soon hopefully.

    Sandy

  11. Countrymom

    Countrymom New Member

    Beth,

    Let us know when your next appt is and maybe some us can meet you then. Usually there is someone here from the board!! I met Elaine on my first visit, Dalphia on my 2nd visit and Sheila on my 3rd, Lynn had an unplanned event and had to skip that day.

    I am glad you are going and hope to meet you as well. Good luck, it is so nice to have this support,isn't it?

    Dani
    [This Message was Edited on 11/14/2005]
  12. BethW

    BethW New Member

    Hi Sandy - Dani,

    Yes, the support is wonderful, especially when everyone is coming from a distance and from all directions. You know, Sandy, I say 14 yrs for the illness, but actually it began in 1963. I had mono about 8 mths before and was even in the hospital for it. I made it back from that but suddenly developed this strange sickness with all the symptoms of now, even ran a low grade fever like in 1990. The flu symptoms, lymph gland pain and swelling, sore throat, pain in legs upper body, etc., memory problems, trouble walking. They took me to a large city hospital 100 miles away and ran every test under the sun. They finally diagnosed it as "neuromuscular disease of unknown origin." Isn't that weird? I rested for a year and gradually recovered toward the end of that year. Then after my hysterectomy in 1986 the same thing happened except this time it was more pain and less viral, diagnosed with fibrositis. This too went away after a couple of months. I got those old hospital records when I got sick this time and it was strange to read the doc's notes and see the same illness from that many yrs ago rearing its ugly head.

    You guys have a great visit and enjoy seeing each other. Maybe we will meet in December. My appt is Dec. 12.

    Beth
  13. karatelady52

    karatelady52 New Member

    You're definitely in the right place for figuring out what your underlying problems are. They will check for bacteria such as lyme disease (lyme causes a lot of neurological problems) and viruses. Of course, you already know you have Epstein-Barr (mono) virus.

    I love that diagnosis "neuromuscular disease of unknown origin." They might as well say "blah, blah, blah, blah, BLAH." :-}

    There's probably something causing it to be active in your body.

    I won't see you on the 12th since that's a Monday. I come on Tuesdays usually.

    Hope you are feeling ok today,

    Sandy
  14. ldbgcoleman

    ldbgcoleman New Member

    Jansdad darn I could have come by yesterday but I didn't realize you were there! I live closeby and feel very lucky about that.

    Beth I'm sure we will meet eventually! The only good thing about the IV experience is talking to other people going through the same thing. Don't be shy most people are happy to talk to you!

    So far I have met Dalphia Sandy and Sheila. Looking forward to meeting everyone else! Lynn