Dallas FFC Second Visit

Discussion in 'Fibromyalgia Main Forum' started by intrigue, Oct 31, 2005.

  1. intrigue

    intrigue New Member

    I had my second FFC visit last week. There's too much info to list, so I will try to summarize.

    2nd visit is another hour visit with the doctor
    Afterwards had blood drawn for bloodwork for infectious panel

    Relevant blood test results:
    NK Cell Activity- should be 20-50 - mine was 5
    Rnase-L Activity- should be 1-10% - mine 20%
    T3 was "in range"-range is 230-420 - mine 262 (doctor said he'd like it to be 360)
    Reverse t3- in range 90-350 - mine 469
    testosterone is high (due to my polycystic ovanian syndrome)
    Cortisol was a little low
    Growth hormone is low for my age
    ACTH Plasma was way high - range 5-27 - mine was 108
    Prothrombin Fragment - range .5-1.6 - mine .4
    Thrombin-Antithrombin TAT - range <4 - mine 4.1

    Diagnosis:
    Because of the high levels of RT3, i'm supposed to take T3
    Because of the low cortisol, and high ACTH, dr kippels thinks my adrenal system is fatigued, so he wants me to take cortisol for a few months to give it a break.
    He also prescribed heparine and boluoke for because he suspects fibrins in the blood keeping my muscles from getting nutrients.

    I go back in a month to get the results of the infectious panel.

    So now I am taking so many pills, its embarressing. :)
  2. ldbgcoleman

    ldbgcoleman New Member

    Now you are getting somewhere! I have almost all of the same problems but after treating and retesting all are getting better!

    Ok now for the Heperin. I hadf a hrex that lasted about a month. It was swollen glands and a sore neck and sholders. I kept telling me this was a good sign I was getting the nasties out into my blood stream so they could be attacked and eradicated!

    Your abdomen will probably be sore and swollen for a while this goes away. Get a couple of bags of frozen peas and after the injection put these on your tummy and it helps alot! Plan on wearing loose clothing until the swelling goes down. You body gets used to it and you barely even notice it after awhile.

    Giving myself injections freaked me out but I found a device called an Autoject at diabeticsexpress.com It costs about 35 and gives you the shot and delivers the dose in a push of the button. This has been a lifesaver for me.

    You may feel worse for a while but just hang in there! keep us posted on how you are doing. Lynn
  3. huckee

    huckee New Member

    Hi there,
    I just put a post on about FFC lab costs. I really mis-understood their program (totally my fault). Would you be willing to share what your lab cost ran. I have pending appt. in Amarillo, Thanksgiving week and I think I'm going to have to cancel because of cost. I can't believe I mis-understood this. I'm majorly depressed now! Appreciate any info you might send my way.
    Huckee
    If you would prefer to e-mail me private let me know.
    Thanks.
  4. intrigue

    intrigue New Member

    Lynn,
    Thanks for the heads up on heparin. I am not looking forward to it. I don't do well with needles. I was sort of amused about how casual Dr. Kippels was when mentioning "you'll have to inject this yourself twice a day" Heh heh ... I don't think so. :) I will make my hubby do it. Yup, and I am really looking forward to a bruised tummy. yippe!

    Huckee,
    I don't mind sharing costs with everyone. Cost was a major factor in keeping me from starting treatment sooner.

    Your first two office visits are $375 each for one hour with the doctor. If you have insurance, they may cover part of the costs. You can expect $200 or so in supplements depending on what they think you need, and $115 or so if you take an IV.

    After the first two visits, the office visits are $165 each for 30 minutes with the doctor. The IV's range in price.

    I don't have my notes with me but I want to say that the labs cost $1200 straight up if you tell them you don't have insurance. If you do have insurance, your insurance should cover the labs costs. Your cost would be whatever deductibles and co-pays your plan has.

    If you go to one of their monthly seminars, they will give you specific cost info if you ask. They also give you a discount coupon good for your first visit.

    For me, I have Blue Cross and Blue shield. My labs are covered. I pay a 20% co-pay. The claims have not been finalized yet. The office visit is covered out of network for me ....which means I have a deductible to meet and then they pay 60%. Supplements are not covered for me, and I am still working on the compounded prescription drugs.

    Kinda long, but I hope it is helpful.
  5. huckee

    huckee New Member

    I don't have any insurance. I was paying for a private policy but it just was too costly. I actually talked to a gal at the Amarillo office and she was very helpful. She said to figure the lab costs to be $2000-$3000. They do have credit available as well. I really appreciate your info and help. Do feel that the whole process with FFC has been beneficial? I have felt so bad for so long I am at my wits end. For years I had been able to maintain and recover quicker but the last two years the fatigue has been overwhelming. So between the anticipated costs and trying to deal with SSD my depression level is at it's peak! Thanks again and let know how you feel about the FCC's treatment.
    Huckee
  6. intrigue

    intrigue New Member

    I've read a lot of positive experiences about FFC treatments on this bulletin board. That actually played a big role in getting me to just do it ... and make an appointment.

    I've justified the cost to myself, because I just don't feel like I used to and I don't want to feel this way forever. Even if this treatment doesn't do everything for me ... at least I will always know I tried.

    I'm only a month into treatment, and I still have a long way to go ... but for the first time in the last 2 years I feel like I have some hope. If you do a search for FFC on this board ... you'll find a lot of other people's experiences.
  7. ldbgcoleman

    ldbgcoleman New Member

    I also had my husband do it but that got to be a pain. HE goes to work way before I get up!) I am telling you try the autoject. It works great! Take Care and you counldn't be a bigger wienee than was! Lynn
  8. Bambi

    Bambi New Member

    haven't seen much except from people just starting. I haven't heard from
    those that have gone for at least six
    months and are doing really well. I will check the search. It surely IS expensive and that worries me. I know everyone is out to make a profit but
    with these dd's so many are without adequate funds to just LIVE. Eating can be an iffy thing. I think if they are really helping people and really want to help more they should be getting sponsors for those that cannot afford it..scholarships, fund drives, something! I hope people are comparing test results and seeing enough differences. It just doesn't quite seem, I don't even know what..but I want to see the long term results.
    [This Message was Edited on 11/01/2005]
  9. ldbgcoleman

    ldbgcoleman New Member

    Try sarasmom, wishingonastar, chakle, jjjeeennniiiee update thread, lconstable, karatelady, puglover and me. Some of these people don't post as much anymore because they are feeling better abd doing things! I have met so many people while doing Iv's who are much better. The most notable a young man 15 who has had problems since age 11. He had Lymes and a host of other things. He has gone from not being able to go to school to playing football! There are alot of people getting their lives back! It takes 6 moths to a year depending on what is going on with you and how long you have suffered.

    Lynn
  10. sues1

    sues1 New Member

    Growth Hormones are produced when you sleep well....if we do not produce so many....we also have higher sugar readings.

    Or so I have been told.......

    So sleep is really important in so many ways for our healing.

    Thanks for the posting..............Blessings