New to board/FFC Ft. Worth

Discussion in 'Fibromyalgia Main Forum' started by pawprints, Dec 1, 2005.

  1. pawprints

    pawprints New Member

    Hi:

    I have suffered from CFIDS for about 15 years, since I got back from my honeymoon.

    I found this board and would like to be part of it but have very little energy to even complete simple tasks, so will try my best.

    My sister took me to the FFC in Ft. Worth because we had read good things about Dr. Larry Sharp.

    I am positive for many viruses, bacteria and antibodies to Lyme. Still not positive what that means...do I have Lyme or not?

    He put me on Burbur, Cumanda and Heparin. He never offered me antivirals or abx. Unfortunately, before I could get too into the program my IC kicked up and I have had to stop the protocal to concentrate on that. I am very discouraged to say the least.

    I would love to hear any tips to help with the IC so I can go back on the program from Dr. Sharp.

    Also, I would love to hear from anyone who has seen him. It seems like he operates very differently from the other centers and I am wondering if I made a wise choice.

    Thanks for any help. I live in Florida so needed to travel to any FFC, but had a good friend in the Dallas area.

    Regards, Shana
    [This Message was Edited on 12/01/2005]
  2. LISALOO

    LISALOO New Member

    I just wrote Smithy about my IC and how I got nearly symptomless, unless I eat something really horrible. So did my sister's sister-in-law. Search Lisaloo for title. I just wrote it a couple of days ago.

    I understand with the problems of supplements, I couldn't take many in the beginning of my IC. I had to get my body better first. Now I can take pretty much anything the FFC throws at me, although I did have symptoms for the first time in 2 months, found out it was the malic acid.
  3. pawprints

    pawprints New Member

    Thanks for the information. I read your posts. Where do you buy the baking soda capsules or how do you make them?

    I have checked for the book you mentioned and found it is out of print. I will keep searching for it.

    I hope the FFC in Ft. Worth will work around my IC. They said that nobody else with IC had any problems with either the Burbur or Cumanda or Heparin.

    I will try to let the inflammation settle in the bladder and then add one thing at a time.

    Good to know others have worked the program with IC.

    Regards,
    Shana
  4. LISALOO

    LISALOO New Member

    I actually learned more from the group on Yahoo, just search for interstitial cystitis puzzle. I would get an e-mail sent to me daily with everyone's comments, questions.

    I made the baking soda capsules myself. $1 for the baking soda. You can buy empty gelatin capsules online for like $5. Lasts me months. Make sure you take one in the morning, because otherwise it can keep you up at night (which is bad enough for me now). My sister's sister-in-law suggested a 1/2 teaspoon in a big glass of water, but that taste gets bad after awhile!!!

    I go to FFC-Cleveland and I did have to explain some things. Like how vitamin b and vitamin c are too acidic so I have to avoid them. I had to explain that they cause me pain and burning. But the dr completely understood! I also had to explain that I can only start one supplement at a time to make sure it doesn't cause problems.

    Good luck and I hope your dr is helpful too! Just remember, with IC what one person is sensitive to another person isn't. It's weird that way!


    [This Message was Edited on 12/01/2005]
  5. scotlandrose

    scotlandrose Member

    I have been a patient of Dr. Sharp for 2 years. He is a Godsend!!!!!!!!!!!!!I don't like to think where I would be without him. I could write a paper on the man...what do you specifically wanna know?
    Scotland Rose
  6. pawprints

    pawprints New Member


    I was wondering what your diagnosis was, how long you had been sick and what type of treatments he has prescribed over the last two years. Also, what amount of function have you recovered as far as daily living activities.

    Thanks for a reply.


  7. JLH

    JLH New Member

    Welcome to our board/support group. We are always glad to have new members!!

    I have cfs and fibro--I have had them and lupus since I have been 10 and I am now nearly 55.

    I've not been to a FFC, but I'm sure those that have will be along soon!

    Hugs,
    Janet
  8. kylesmom

    kylesmom New Member

    ...and welcome.

    I am sorry you are battling IC. Ouch!
  9. pawprints

    pawprints New Member

    Thanks for the welcome. It is nice to be somewhere where people understand.