Update on fourth FFC visit

Discussion in 'Fibromyalgia Main Forum' started by intensemom, Jul 6, 2006.

  1. intensemom

    intensemom New Member

    HI Friends! I had my fourth visit to FFC Detroit about ten days ago and here I am, just getting around to posting about it!


    I was diagnosed with CFIDS and Fibromyalgia at FFC in December 2005. I am 36 with 2 daughters, ages 7 and 10. I had been gradually getting sicker since my twenties; but the last pregnancy was the straw that broke the camel's back. Up until fall of 2005, I was only treating symptoms; but I knew in my heart that there was an underlying cause. I think deep in our hearts we all know this!


    A PRAISE! Hormones are almost in balance! I will continue taking pregnenolone 100 mg., cortisol 10mg. and testosterone and discontinue DHEA and progesterone. I was taking 50 mcg. of T3...now switched to 2 grains of T3/T4.

    I have HHV6 and Epstein-Barr virus. I have already taken Valtrex for 2 months to get these under control It didn't work and the titers were still high! NEW MED. is called Kutapressin. I will be giving myself injections of kutapressin for 6 mos. It will start 2 x daily for 25 days and then taper off. It's supposed to be a huge boost to immune systme. I also had a shot of gamma gobulin...also to boost immune system. I will be starting the Kutapressin tomorrow!

    I also have chlamydia pneumonaie(not related to the STD!).
    I have already taken Doxycylin for two months for this bacteria. It didn't work, so I will be taking Cipro for 2 months now.

    I was taking Nystatin; for candida prevention during antibiotic therapy. The doctor switched me to Diflucan.
    She said it has a more "systemic" effect!

    She says I am anemic and should take chelated iron..though I have started yet. I am slow about making changes. She also told me to take various other supps. that I haven't done yet.

    I can feel that this doctor and I are moving down the right track! I know I'm going to get better. I must be patient and take good care of myself! I am already better...no more naps and I can take care of my house and children! But I am aiming even HIGHER!

    Some other things that I am doing(that work for me) are: detoxifying baths, alkilizing diet and Ioncleanse foot detox baths(at health food store). It is soooooo... much harder to take care of myself while my children are home from school for the summer! My children are high maintenance and require a lot of time and care!

    Any questions?? I'll check back!

    [This Message was Edited on 07/06/2006]
  2. Jen102

    Jen102 New Member

    thanks for sharing your success story as well as the details of your treatment. very interesting. blessings to you. jen102
  3. place

    place New Member

    I'm glad you are making progress toward your recovery!

    Thanks so much for posting!
  4. spiritsky

    spiritsky Member

    good to hear you're doing better :)))

  5. intensemom

    intensemom New Member

  6. jane32

    jane32 New Member

    i go to the FFC in Philly. I think it is interesting how they all treat differently..maybe that is why some people do better then others there. I think they need a more standard method. I have never heard of Kutapressin. I hav ebeen on valtrex for 8 months now and my levels just started to come down a little but I tested positive for EBV which i didn't beofre treatment...so weird. Anyways. my dr. told me that he didn't expect my levels to drop until after a year and yours only waited two months. Please keep me updated on how the new med works. I am not sure if I could give myself injections. How high are your levels?
  7. intensemom

    intensemom New Member

    I'm not sure what my EB level was....don't have it with me right now. The dr. said it was active.

    It is a little confusing about how they treat us all differently, But I also find it comforting...like I'm not just a number or something. I really feel like I'm being treated, not just my disease!

    I did my first shot of kutapressin this morning in my stomach fat....I didn't even feel it!!!! Yeah! I can do this!

  8. lea

    lea Member

    Thanks for posting.

    What is a detoxfying bath?
    And the alkaliing diet?

    thank you
  9. intensemom

    intensemom New Member

    What I use as a detox bath: 2 cups epsom salt, 1 cup baking soda and 1/2 cup hydrogen peroxide...in a hot bath. Soak for 20 to 30 minutes...sweating is good!

    Alkalizing diet: some foods are alkalizing to the body. It is better to keep the body in a mor alkaline state. It helps the body release toxins instead of storing them. Try this book, "Alkalize or Die."

  10. Marta608

    Marta608 Member

    Tracy, I live north of Brighton. Where is the FCC in Detroit?

    It's wonderful to hear that you're getting actual HELP.

  11. intensemom

    intensemom New Member

    HI! I am herxing from the kutapressin. Very tired and foggy..have to choose my activities very carefully!

    The doctor originally put me on t3 due to high reverse t3. The reverse t3 came down; but so did the t4...so she put me back on t3/t4. I really hope it was the correct thing to do!

  12. intensemom

    intensemom New Member

    HI! The FFC is in Troy, MI! You can find more info. about it at fibroandfatigue.com.

    Thanks for your best wishes!
  13. lddixon999

    lddixon999 New Member

    Good to hear. I just checked into the FFC here in Washington State a couple weeks ago, and won't go into details on how I got there, but all that to say. Is I was really impressed with my 1st visit and feel that I am going to get answers and relief. I feel that I am also going to be on the right track with them and don't care how much it costs me - to get my health and life back.
    Thanks for sharing. This is my first time on this site and this is encouraging. I have another 2weeks before my next appt to get some more answers, and what direction we are going regarding meds/treatment/plan, etc...
  14. pawprints

    pawprints New Member

    Good luck with the Kutapressin. I guess the Herx means it is working.

    Are you doing sub-Q or IM? I am doing the Heparin in the stomach and am so bruised. I would like to ask about the Kutapressin, but I don't know if my body could handle 3 shots in the stomach per day.

  15. CAAnnieB

    CAAnnieB New Member

    I'm very happy for you that you are pleased with your treatment at the FFC! Doesn't it feel wonderful to have Dr's who are treating the underlying causes of our symptoms?! I have found a great Dr. myself who is treating me for Mycolplasma & Chlamydia Pneumonia infections. FYI, it takes a LONG time (year or more) to clear most people's Chlamydia...And it must be hit with 3 different types of anti-Chlamydia agents...One AB alone won't do it because this bugger exists in 3 forms...Elementary Bodies, Cryptic form & Reticulate Body form. Each form needs a different type of antibiotic to eradicate the infection. If you are interested in learning more about this treatment, the BEST place to go is a non-commercial/ informative site called cpnhelp.org. I have learned SO much there & it's a great place for support from others who are undergoing this Cpn treatment.

    Hopefully, your FFC Dr. is knowledgeable re: the Cpn treatment protocol. If not; you could print out the handbook from the site I mentioned & discuss it with your Dr(s)at an appointment.

    I've been on the Anti-Cpn treatment since January & I'm starting to see MAJOR improvements in my Fibro symptoms. (And other symptoms I've had which I had no idea were all tied in to the Chlamydia, such as Migraines, stomach irritation, fatigue, sleep issues...)

    Best wishes for good, steady progress with your new treatment program! I believe we should all "aim high" & not give up until we find the right Dr's/ the right treatments to improve our quality of life & health!

    Keep updating us as it's encouraging to hear of those who are making progress. Which reminds me that I should post an update too!

    Hugs Back At Ya,
  16. CAAnnieB

    CAAnnieB New Member

    Bumping for Tracy & others...
  17. mollystwin

    mollystwin New Member

    I go to FFC in Detroit. I live in Sterling Heights and only have to drive about 6 miles to get there! Lucky me! I have met so many people there who drive from Ludington, Lansing, Ohio, and Canada, I just feel so lucky I am so close.
    How did you know that your hormones are in balance? Did Dr. M do some blood work to determine that, or did she just use your symptoms and how you were doing? Don't you just love Dr. Mustafa? My DH thinks she's a little loopy but likes her and I think she is great! And I have been feeling so much better. My twin sis went to her first and highly recommended her and the clinic. On my first visit I confused everyone, because they thought I was my sis. When Dr. M was examining me, she stopped for a second and laughed and said it was so funny that I looked so much like my twin!
    You should consider going too. It's not that far from Brighton. Maybe I'll run into you guys there someday!!
    Darlene (mollystwin)
  18. intensemom

    intensemom New Member

    I'm glad you said that you like Dr. M. I wasn't sure about her and my DH didn't care about her. But when I got home and did my own research I realized that she was "right on". She is very confident...I like it!

    Did you ever see Dr. Sidhwa? I had 2 appt. with him and he left? I liked him too.

  19. CAAnnieB

    CAAnnieB New Member


    Well, I just looked back at some of my recent replies to posts & I see that I had already responded to one of your posts in May re: Chlamydia! Oops! I apologize for repeating myself! I thought your name sounded familiar!

    My Fibro Fog is so thick at times, it's embarassing. I truly did not mean to give you the same Cpn info twice! Please accept my apology.

    I hope that your healing continues. Keep up the positive attitude. It's great to hear positive, success reports. I hope that others here are inspired to seek treatment for these underlying conditions.


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