Atlanta FFC test results

Discussion in 'Fibromyalgia Main Forum' started by ldbgcoleman, May 10, 2005.

  1. ldbgcoleman

    ldbgcoleman New Member

    Hi Everyone,

    Here is an update on my test results. I chronicled my initial visit earlier so search on Atlanta or go to my profile!

    Since my initial visit I went on the Candida Diet and Stuck with it. I have not missed any of the supplements or prescriptions given. I have had three back and muscle IV's.

    All gastrointestinal problems have completely subsided. no bloating gas or constipation. This happened within three days of starting the Candida Diet.

    have been feeling slightly better. Dr Kelley did tell me that it would take three to four weeks to see a noticeable difference from the supplements.

    I have four main problems:
    1. White blood cell activity- My white blood cells are not working properly. These are suppossed to attack things like cancer cells so they are very inportant.
    NK cell Activity normal range 20-50 I tested 8.1
    RNase L Activity Normal range 1-10 I tested 18
    A.Take a product called transfer factor and work on fixing other problems.
    B. Take Fish oilcapsules by Nordic Naturals

    2. Adrenal fatigue failure- Adrenals control Cortisol, Estrogen and Testostorone and affect every organ in your body!
    Cortisol- normal 1.25 my results .51
    Pregnenolone- Makes Corisol Should be 100-200 mine is 10
    Testosterone- normal 5-9 mine is 3
    DHEA- an adrenal hormone normal over 200 mine is 90
    A. Take DHEA
    B.Use licorice drops 20 drops in a glass of water in the AM and 10 drops at 3 PM for afternoon boost. If this does'nt work I can take a low dose of cortisol.

    3. Hypergoagulation of the blood- This is when the blood vessals get coated and gunked up. It can cause serious problems including heart disease, blood clots, hypertension.
    Normal less than 4 mine is 60
    A. Lumbrokinase
    B. Heperin injections 2x per day (I am a total weinie!)
    After 3 weeks I will go in for a viral test.

    4. Thyroid- Free T4 is supposed to convert to Free T3. Sometimes it doesn't it converts to Reverse T3. Your body makes this under lots of stress (Can also be cause by Yo Yo dieting. OK I'm guilty) Should be less than 150 mine is 169.

    **Solution-T3 Sustance mail order from a compounding pharmacy

    Some of these indicate a virus. I will go back for the viral testing in three weeks. I also will get the hormone testing in two weeks because I had to go off the pill and the optimal is 18-21 days after your period.

    Dr Kelley spent over an hour with me. She gave me a detailed sheet with all the testing results. My husband went with me. She was very patient with all of our questions. Deborah is the program coordinator and she has been great. Even Freda in billing is very helpful and patient. OK so I drive them crazy with questions. I feel like I am finally getting to the bottom of things.

    So far my Insurance BCBS of GA has paid for the labs. I have not heard back about reimbursement for the treatment and IVs. They should pay 70%.

    I am happy to answer any questions anyone has about the FFC or testing I have had. I think FM is such a difficult thing to have because every person gets different test results and responds to different solutions. It is unbelieveable to have someone understand and belive in what you are going through and partner with you to get better! I have just begun to fight!

    Good Luck to Everyone!

  2. ldbgcoleman

    ldbgcoleman New Member

  3. ldbgcoleman

    ldbgcoleman New Member

    I'm taking Ambien and it is working pretty well for me. Actually I am haveing a pretty good week this week. I am cautiously optimistic that everything I am doing is starting to work. I have had 4 Heperin injections and so far so good but I still can't give them to mysel. They don't really hurt but it makes me very anxious. My husband is doing it. I hope to get used to it and be able to do it myself.

    Yes I have a 3 year old Grant, and a 19 year old Bryan who just came home from school. 2 mutts and a kitty. Please let me know what happens on the bike test. I have been excersizing pretty successfully so they probably won't make me do that one! Good Luck!! Hope you are feeling better.

    [This Message was Edited on 05/12/2005]
  4. Sandyz

    Sandyz New Member

    I go to the Dallas Center and when I go back the beginning of June I will get my results. Its always interesting to me to read other peoples results.

    I too feel I am finally getting to the bottom of my CFS/Fm. I feel very strongly they can turn me around and give me a much better quality of life.

  5. ldbgcoleman

    ldbgcoleman New Member

    I am so glad you are going!! I am really psyched about starting the medication to get rid of the cause of all this instead of just medicating and living half a life!! Please let everyone know your results so we can follow howyou are doing! Each person is so different and that makes this so hard to treat. Good Luck! Lynn
  6. karatelady52

    karatelady52 New Member


    I'm taking the Xyrem tonight for the first time -- yikes!
    It just came in from Fed Ex this morning and they had me sign for it.

    I'll let you know how it does. I asked the pharmacist why you have to get in bed before you take it -- in other words, was it that strong and he said sometimes people get a little dizzy but it can take 5 or 10 minutes to feel the affects from it.

    Lynn: I'm glad you mentioned how long it takes for the supplements to start working because I forgot to ask Dr. Bullington. I've been on mine about 2 weeks now.


  7. Mikie

    Mikie Moderator

    It really sounds as though these guys are on the right track. I am a HUGE believer in transfer factors and treating hypercoagulation with Heparin. The injections get to be routine. Mine didn't even hurt.

    You may start feeling the immune response from the TF's and Heparin. This can include water retention, feeling fluish, sore throat, headaches, and swollen lymph nodes. It does get better as time goes on.

    Best of luck to you and please keep us informed. My daughter lives in Atlanta and she has FMS. She does very well on her own regimen, but you never know when someone will need a higher level of healthcare.

    Thanks for sharing.

    Love, Mikie
  8. ldbgcoleman

    ldbgcoleman New Member

    Thanks for the info! I would love to hear how the Xerym Works. So far I have had headaches from the Heparin but not too bad so I can handle it. When do the side effects usually start?? Immediately?? or does it take awhile? I hope I am over the hump. Talk to you all soon. Lynn
  9. Sandyz

    Sandyz New Member

    I am excited too, I think they have such a good program. Its feel so good to be taken seriously by the doctors there. I feel good about getting proactive about my health. I had just about totally given up and was too sick and tired to fight anymore.

    I will post my results here when I get back. I wish I could go now but I have to wait for my boys to get out of school. They are going with me. They are 9 and 14. The 14 year old is showing symptoms of Fm so I think I`m going to have my doctor check him and see what he thinks.

    Good luck with your treatments. Let us know how its going.
  10. HppeandMe

    HppeandMe New Member

    I keep reading about a protocol with Xyrem and Heparin and I am not sure what else. Can somebody tell me what the protocol is. I haven't slept in God only knows how long and I am anxious to try Xyrem that seems to really work for people. Where can I find this protocol?

    Furthermore, I am on many meds. How can I find out if I can take my meds with other meds??

    Thanks guys!
  11. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    This will be really helpful to newbies and people who want to know what to expect at the FFC's.

    don't worry about the needles. I don't take heparin, but I've been doing my own allergy shots for years. It was a huge hurdle for me to do my first one on myself, but it got so hard to get to somewhere to get my injections done, so I had to bit e the bullet.

    Sometimes I have to do 2-3 per day in high seasons and it's second nature now. Tip: if you are only doing sub-cutaneous, you barely feel it in the fatty part of your thigh, much easier to reach too. Hurts more in the arm and awkward too.

    Oh, and the needles can make a big difference too. I get extra fine, short needles. but you may have to do intramuscular, dunno.

    [This Message was Edited on 08/07/2005]
  12. ldbgcoleman

    ldbgcoleman New Member

    Hi Everyone- I eventually decided against the Xyrem. I have been doing the Heperin Since May and it is a piece of cake now. I have a device called the Accuject which you load the syringe into and you just push abutton.

    to answer the question about protocol. The Xyrem is for sleep. It puts you in the really deep sleep you need to get. It is working really well for alot of people. karatelady (Sandy) has been using it for a while and loves it.

    The Heperin is an injection to treat hypercoagulation. The H is a build up of fibrins inside you blood vessels where stealth viruses can hide. There is a blood test for it. They prescribed Heperin and Lumbriknase which is a capsule for it. The Lumbro breaks down the fibrins and the Heperin losens them and gets them into your blood stream.

    After I used the heperin for 3 weeks I had viral testing done. The heperin helped unmask the stealth viruses and get them into my blood stream so the test could be as acurate as possible. I teseted Positive for Mycoplasma which is a bacterial infection and 16 times higher than normal for EBV. I am continuing the HEperin and Lumbro to get those fibrins out in the open and taking antibiotics for the viruses. I am feeling tons better!! Tons!!

    was retested for everything last week and will get the results in a couple of weeks. Then I will be able to tell you all what I am doing that is working and what is not. They will adjust what I am taking and doing acordingly.

    This process takes a while I am on week 20. people with Lymes take much longer. I feel like I am really at the root of my problems and attacking them. Dr B told me we were going to completely eradicate the EBV and the Myco and get everything else back to normal. She was very confident. I am very commited to dong what have to do.

    Hope this helps! Lynn

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