2nd Visit to FFC

Discussion in 'Fibromyalgia Main Forum' started by meowchowchow, Dec 14, 2005.

  1. meowchowchow

    meowchowchow New Member

    I had my 2nd visit today. I received the results of my initial blood work. Lots of things wrong. The one good piece of news is that I don't have candida overgrowth as originally expected and I can stop taking the nystatin.

    Low Thyroid (Low Free T4, Low Free T3, and High Reverse T3)
    Adrenal Dysfunction (Low DHEA, Low Aldosterone, Low Cortisol)
    Low Female Sex Hormones (Estradiol, Progesterone, Testosterone)
    Low Pregnenolone
    Increased Risk for Hypercoagulation
    High C Reactive Protein
    Decreased Natural Killer Cell Activity
    Increased RNase- L Activity
    Low B 12

    Dr. Bullington prescribed:
    Maitake for natural killer cells
    pregnenolone
    Omega 3 Fatty Acids
    Cortisol
    Testosterone Cream
    T3

    We discussed heparin but due to the die off factor and herxing involved decided to wait on this until at least after my wedding on the 7th of January. I can't handle feeling any worse during this busy time.

    I'm not looking forward to taking MORE stuff but I guess I have to. I also had a nutritional IV and an Energy Shot. I'm a little worried (okay, a lot worried) about the money involved in this. Today was almost $800! I just hope all this helps.

    Meow
  2. karatelady52

    karatelady52 New Member

    I know the cost seems steep at first but it does get better. I turned my bio-identical hormones into my insurance company and only have to pay a copay of $20 for each one. It still ends up being quite a bit because I'm taking all the female hormones and cortisol and testosterone.

    Just look at it as temporary as we get our immune systems up to par. My appointments are now spread about 3 months apart.

    Some of the supplements I have found cheaper online. Its great you don't have candida because that is such a hassle with antibiotics. Of course, you may need them if she starts you on abx (you can get them cheaper online by the way.) Vitacost dot com is a great one and some products I buy here.

    Keep moving forward and congratulations on your upcoming wedding!

    Sandy
  3. meowchowchow

    meowchowchow New Member

    Sandy - Thanks. What else were you diagnosed with besides Lyme? Also, did you take the heparin?

    Thanks,
    Meow
  4. Sandyz

    Sandyz New Member

    I go into the FFC too. I am about 8 monthes into my treatment and I am about 60 to 70 percent better then I was. You are in the right place, stick with and it will help you. You are going to probably feel worse for a short while before you feel better.

    The cost can seem high but compared to all the other doctors, chiro, meds,etc that we have tried and it hasn`t help it really isn`t. The labs are the most expensive part. But if you have insurance they usually pay alot of it. The cost went down for me after the first couple of visits. You get most of the supplements added on there then and later on you won`t need to keep taking all of that. Remember they are trying to build our bodies back up so they can function normally again. It takes about a year to get the full benefit.

    Sandy
  5. Countrymom

    Countrymom New Member

    Thanks for posting your results. Don't worry about the money... you are worth it!! Thats what my husband tells me when I worry about it.

    I am on over 50 pills a day,the heparin shots,and I am on a ton of bio-identical hormones too. I am still in the "feeling worse" phase and will probably be here for awhile since I have lyme. My road to recovery will be very long but I am positive the FFC will get me there.

    They are so knowledgable and work with you, they are open to alternatives and they understand our disease. You are wise to hold off until after your wedding.

    Good luck, gentle hugs and wish you the happiest wedding day!

    Dani
  6. Mikie

    Mikie Moderator

    Thanks to all who post about FFC's. I really do believe they are on the right track. Much of my own treatment paralledled what the FFC's are doing and I have gotten better. It does take time and usually gets worse before getting better.

    I know they seem expensive because there is so much up-front cost, but avereged over time, it is well worth it to achieve healing.

    Love, Mikie
  7. Juloo

    Juloo Member

    I'll be there Monday for my follow-up appointment. I'm curious as to what the results will be. I'll post them on the board by the middle of next week!
  8. KingNeptune11

    KingNeptune11 New Member

    From everything I have researched, including Garth Nicholson, I believe that the FFC's are well worth the cost.......In fact, I am going next month, for my first visit......My ex-Mother-in-law has had great results from the FFC in Vegas and I am surprised at how much better she looks in just 5-6 months.......It is amazing........

    Being a chiropractor, I have learned to be skeptical of many medical procedures and health care in general......But I really like what I am hearing and reading about the FFC's......I hope to have good results too......I will let everyone know about my experience.......Peace.....
  9. karatelady52

    karatelady52 New Member

    Besides the lyme, I have active Epstein-Barr, CMV and Chlymydia Pneumonia.

    I have been taking the Heparin for about 4 months now. I know people talk about herxing on the Heparin but I really didn't. My herxing began after I started the abx.

    Sandy
  10. KingNeptune11

    KingNeptune11 New Member

    What type of antibiotics do you take and how long did they think you would need to take them.........I am just curious about the protocol on the antibiotics........Thanks.....John
  11. karatelady52

    karatelady52 New Member

    She hasn't given me a time frame but I've been on a great board called Lymenet dot org and many of those with chronic lyme take abx for quite a few years.

    I've been on mine for about 4 months now. I had to start out slow because the herxing was too much but I've worked up to the amount suggested. I take Zithromax/Ceftin for abx along with Heparin shots for hypercoagulation, Samento, Cumanda and Artemisinin.

    Since many seem to relapse after years of abx, I'm also looking into alternative methods that are working for those on lymenet such as the Rife machine, HBOT (hyperbaric oxygen therapy) infrared sauna and a few others my brain fog can't think of right now.

    I also had low everything -- progesterone, cortisol, estrogen, testosterone, low natural killer cells, low magnesium, low thyroid, adrenals --- you name it.
    They put me on bio-identical hormones which have helped.

    I probably answered a lot more than you asked but I really do like the protocol at the FFC's.

    Sandy
  12. TXFMmom

    TXFMmom New Member

    I was pleased with the FCC and was getting better.

    However, when I called in to the Houston FCC because I was having complications from a medication ordered, and the condition wasn't any better, and learned to my surprise that the Dr. had quit and that they hadn't notified ANY OF THE PATIENTS UNTIL THEY CALL IN FOR AN APPOINTMENT.

    Frankly, that is unethical, as the Board for TX spelled out. They said that if a doctor is leaving a practice, by law, the patients must be given 30 days in which to make a decision about moving records to new doc, etc. BEFORE THE DOC LEAVES, UNLESS UNAVOIDABLE. They told me she wants to be a stay at home Mom.

    They may have good ideas, but frankly, the ETHICS PROBLEM DISTURBS ME, BIG TIME, AND MY INTERNIST SAID HE COULDN'T BELIEVE THEY DID IT EITHER.
  13. KingNeptune11

    KingNeptune11 New Member

    Thanks for the info Sandy, and I appreciate any info you can give me, so feel free.......I have been trying to get my doctors to try a course of antibiotics, especially from reading Dr Garth Nicholsons info and other doctors who believe you have to be more aggressive in your approach, especially with mycoplasms........Thanks for the heads up on the Lyme Disease board, I have not been there yet, but I will look into this very soon.......I have suspected a possible lyme disease component in my illness, so it will be interesting what they find next month.......

    My ex-mother in law has done real well in her 6 months with the FFC, and she highly recommends there treatment protocol.......I am so close to going back to work full time, I just need some help getting over the hump......My raw diet has given me such a big improvement, I cant wait to go to the FFC.......Thanks again.......John
  14. ElysianBliss48

    ElysianBliss48 New Member

    What is FFC?

    Elysian
  15. Juloo

    Juloo Member

    Fibromyalgia and Fatigue Centers.
  16. ldbgcoleman

    ldbgcoleman New Member

    I have been on the ABX since the end of June. I have an appt on the 27th and am hoping to get off of them then but I am feeling so much better I am hesitane to change things.

    As for the Texas issue with the Dr leaving. Dr Kelley here in Atlanta left at the beggining of the summer and they sent a letter out introducing Dr Bullington. I absolutely love her. Could it be possible you were inadvertantly skipped on a letter they sent or your's was lost in the mail. I always try to gove people the benefit of the doubt.

    Take Care Lynn
  17. meowchowchow

    meowchowchow New Member

    Hi Lynn - Good to hear from you! I'm gald you're feeling so good, I hope to be there soon! I'm on so many things right now it's scary. What will Dr. B do? Run tests on you to see if the lyme is gone or what? Just curious. Also, did you take the testosterone cream that you rub into your skin?

    Meow
  18. TXFMmom

    TXFMmom New Member

    No mistake. THEY ADMITTED THEY DECIDED NOT TO NOTIFY THE PATIENTS UNTIL THEY CALLED FOR AN APPOINTMENT.

    That is against the law in TX.

    I am an Advanced Nurse Practitioner, and having this happen, when I was in to see them after she gave notice and not a word was mentioned, is inexcusable.

    The put me on a med, I had a real problem - tendonitis in my elbow - and then I was having real problems with the med. Being left in the lurch is not CORRECT.

    Doing such an unethical thing has left me totally queasey with them.
  19. oesmom

    oesmom New Member

    I also go/went to the Houston FFC. I was never told the former doc left either. I was in the exam room and the nurse said you'll see Dr. so and so today...nothing about Dr. Littles leaving...wasn't told anything until I, too, was having a problem with a med and insurance not paying for some blood work. I wanted to send a fax to the dr. and was told she didn't work there any longer. I totally understand that people have gotten so much better with these clinics, but for me, I'm out over $1000 out of pocket and feel worse. I have taken ther compounded meds and finally when they wanted me to take compounded nystatin, I asked why I couldn't just get it filled at my pharmacy for a $10 copay instead a $45 compounded bill that's not reimbursed. They said, "Oh, OK". I've taken my blood work to my rheumatologist and he is furious at some of the stuff they are prescribing...said it is down right dangerous. Just my opinion.
  20. bioman85

    bioman85 New Member

    I go to the Philly FFC, and I have a totally different opinion. The doctor left at the clinic here too, but we received a personal letter in the mail months in advance, along with a bio of the new doctor.

    Also, I'd like to hear specifically what your rheumy did not like with the FFC protocol. As for the feeling worse part, that pretty much happens to everyone who goes to the FFC, and they tell you that up front.