Progress Notes 7 months after starting at FFC

Discussion in 'Fibromyalgia Main Forum' started by spiritsky, Jun 20, 2006.

  1. spiritsky

    spiritsky Member

    Another long update for those who might be interested.

    Progress continues after 7 months starting at the FFC. I'm amazed to say it but I consider myself in remission now. Still getting stronger, and sleep continues to improve with muscle twitching almost gone and not really an issue any more.

    Also, I no longer see my doctor at the FFC. Don't need him right now and don't think I will anymore unless I need a change of prescription strength.


    Personal Discoveries this month
    -------------------------------

    1) Got the results of my latest hair analysis. I was surprised to see I still have a deficiency in Copper in spite of taking large doses of supplements. I just don't seem to be absorbing copper very well. Starting to take a very good colloidal copper supplement instead (MesoCopper) which I hope will help. Also, I'm giving up Soymilk which may really be at the root of the problem for me...too many phytates in my diet which may be causing malabsorption.

    Regimen Changes since last update
    ----------------------------------

    1) Starting to take 1Tbs MesoCopper a day.

    2) Back on some thyroid hormone...18mcg T3 daily. I've been going through a period of stress lately and feel I need the extra T3.

    3) Dropping the Silica Gel...Don't think I need it anymore.

    BACKGROUND
    ----------

    I've been diagnosed with CFS and have suffered from milder forms of it for the last 20 years or so. Then I went off
    the deep end about 2 years ago, finally becoming completely disabled in July 2005 and rarely left the house. I was entirely in the care of Anne and don't know how I would have survived without her.

    Over the preceding 18 months, Anne, and I had moved toward an alkaline diet and started mineral balancing in the hopes of healing this condition, and her own (she suffers from Fibromyalgia). Both of these were helpful, primarily for dealing with chronic infections and candida. After staying alkaline I have not had the flu or any of the weekly recurring flu symptoms. I used to pick up everybodies colds but not anymore. But in spite of my strengthening immune system I was still declining, with
    energy levels dropping to their lowest levels November 2005. Unending agonizing malaise with constant muscle twitching is the only way I can describe it - yuk!

    I couldn't understand, with everthing I was doing in terms of diet and supplements, that I was still not well. I was
    running out of options. I did all the rounds with the doctors and the specialists and was heading for long term disability when I took a chance on going to the FFC clinic in Torrence. It was really my last big hope. And while it hasn't been cheap, for me, it's been worth every cent.


    TREATMENT PLAN
    --------------

    I was diagnosed at the FFC with pituitary disfunction, sleep disorder and multiple hormone imbalances. Along with previous, but not current, EBV and Candida infections. No Hypercoalgulable issues, basically, just hormones and sleep problems.

    Treatment started with DHEA, 50mg daily, and 100mg Pregnenalone. I don't know if it was high hopes, but
    within a few days I noticed the malaise already beginning to lift. A week later started with 25mcg T3 and 1iu Growth Hormone.

    Then about 3 weeks later, 100mg Testosterone/Chrysn cream. With big smiles and bigger hopes, I could see the positive impact of each hormone as it was added, with my mood, sleep and stamina increasing rapidly.


    RESULTS SO FAR
    --------------

    I'm able to hike several miles a day and do a round of weights and stomach crunches.
    I do those in the morning before heading off to a 4 hour work day with a 30 minute commute each way. On my way home
    from work I'll often do a bit of grocery shopping before getting home and sometime cook a dinner for Anne.

    Some days, I'll even do another hike in the afternoon. I get home at about 3:30 to 4pm...My work hours are rediculous (in a good way) but I'm starting to enjoy it. I think I could go back to work full time right now but I'm going to take it slow. I'm shooting for returning to regular hours by end of July.

    One other thing. My body is feeling younger by the week. I've never seen it respond like this to exercise. Fat has
    come off everywhere but I've gained about 20 pounds in mass, and the whole body is feeling more toned,
    strong and resilient.



    HORMONE TWEAKING
    ----------------

    Thyroid - I'm back on a bit of Thyroid hormone...18mcg timed release T3 a day.

    Growth Hormone - steady at 1/8 iu daily.

    Testosterone - Reduced from 120mg to 100mg daily.

    DHEA - No change, steady at 25mg.

    Pregnenalone - 100mg daily.

    Progesterone - 50mg oral at bedtime.

    SLEEP TWEAKING
    --------------

    Overall this one was the hardest to deal with. With the constant muscle twitching, had trouble falling asleep and staying asleep.

    Current doses I'm taking are.

    750mg Tryptophan - 2 hrs before bed on an empty stomach.
    25mg DHEA - 2 hrs before bed
    50mg Oral Progesterone 2 hrs before bed.

    500mg GABA - at bedtime
    1mg Melatonin - at bedtime

    Put on sleep mask and dive into the black ocean of sleep.

    CURRENT SUPPLEMENTS:
    --------------------

    Here's a list of everything I'm taking at the moment

    1) Hormones - Testosterone 100mg, Growth Hormone 1/8 iu, DHEA 25mg, Pregnenalone 100mg, Progesterone 50mg

    2) Extra Minerals:
    8 mg copper - in 4 divided doses
    1 Tbs MesoCopper
    50mg manganese

    3) 1 Source Naturals vit/min complex

    4) 1500mg DL Phenylalanine
    4a) 350mg N-Acetyl Tyrosine
    5) 500mg N-Acetyl cysteine
    6) 600mg Calcium citrate/malate
    7) 300mg Magnesium citrate
    8) 600mg Potassium citrate/aspartate
    9) 1000mg D-Ribose
    10)500mg Super Oxide Dismutase
    12) Creatine Monohydrate - 5 grams daily.
    13) 1 scoop Inner Light Super greens daily.
    14) B12 shot about once a week - 1000mcg
    15) an additional B50 complex.




    WHATS COMING
    ------------

    More of the same:

    1) Stay alkaline
    2) Continue to balance minerals. I seem to have trouble with keeping copper levels up. Working on it...
    3) Continue with hormone balancing
    4) Continue with getting better sleep
    5) Excercise daily
    6) Gratitude, Gratitude, Gratitude...

    Having many days where I'm feeling really good.
  2. intensemom

    intensemom New Member

    I am so glad to see your post. I'm so happy for you! I'm just sorry you had to suffer through that!

    Thank you for posting; it helps give us hope!

    I am going to my fourth visit to FFC Detroit next Monday. I will post a progress report; but I don't think it will be as detailed and well-organized as yours!

    Tracy
  3. mrpain

    mrpain New Member

    Is there a FFC in the Florida/Georgia area?
    And what is the usual cost if you don't mind me asking?[This Message was Edited on 06/20/2006]
  4. sues1

    sues1 New Member

    I have not been there.....yet...but you can find locations:

    http://www.fibroandfatigue.com/physicians.php

    Also shows if it is too far to travel.....they have a special pkg.

    Doing a search here (this site) can show you costs and you can call and discuss it with them.

    Good Luck.......Susan
  5. rockgor

    rockgor Well-Known Member

    Glad to see such a happy progress report. Hope it continues.
  6. winsomme

    winsomme New Member

    it is great to hear success stories.

    i see that you are taking 750mg L-tryptophan to help with sleep. this is a difficult supplement to come across. could tell me what brand you are taking and where you find it?

    thanks
    bill
  7. Jen102

    Jen102 New Member

    Could you please give a brief outline of the principals you follow to stay alkaline? Do you limit meat, for example, eat certain veggies or fruits? I don't know alot about this area but some seem to really benefit from it. Thanks. Jen102
  8. 6t5frlane

    6t5frlane New Member

    Can you please tell me more about the twitching. Where was it and was it all the time etc...Thanks....
  9. jane32

    jane32 New Member

    so happy for you! Can you tell me where you get the majority of yoru supplements. It doesn't appear that you use a lot of the FFC ones and I am starting to wean myself off of their brand and find other substitutes. Was your B-12 low? Mine was normal but I decided to take a 5 mg sublinugal tablet and it has helped.

    How did you knwo what to do with the copper? Have you read a lot of books or just reviewing this board?

    I think I will try that hair study.
  10. jbgoth

    jbgoth New Member

    to the FFC in Atlanta next week. I really hope they can help me. I have read many positive AND negative things about them. It would be fantastic if they opened a FFC somewhere in Florida since i live in Miami.

    Jordan
  11. Juloo

    Juloo Member

    Late last fall when I started w/the FFC in Atlanta, I was told that there were plans for an Orlando office, but at the time I didn't get any dates.
  12. Hootie1

    Hootie1 New Member

    I am happy that you are doing well. Is the progress attributed to the care at the FFC? Did the FFC put you on the alkaline diet, because they told me that the only way to get rid of the underlying causes is to treat them.

    I'm wondering if your recovery is because of the FFC or because of what you have done on your own.

    I have chronic and recurrent EBV and am taking 4500 mg of valtrex and plan to for many months. This treatment has been very difficult and I am assuming that the flu-like symptoms is due to the viruses.

    It appears though that your recovery did not have much to do with the FFC? Is that true?[This Message was Edited on 06/21/2006]
  13. spiritsky

    spiritsky Member

    to answer your question, my recovery was partly my own doing and partly FFC...I would say it was about 50/50. But I wan't to say, without the FFC doing the rigourous testing and without there understanding of how to properly treat hormone imbalances (which I've discovered very few doctors know how to do ...even supposed specialists like endocrinologists) I would not have recovered so well.

    Where the FFC didn't help me was in the area of Alkaline diets, partly because I had already mastered that ares before going to see them, and partly because they don't really know as much as they should about them.

    Also, in the area of Sleep, I did get some good tips from the FFC but finally it really came down to taking what they gave me and extending the knowledge a bit. Especially in taking L-tryptophan. They were recommending antidepressants and I decided to go with tryptophan which is healthier and works better for me.
  14. spiritsky

    spiritsky Member

    As for the supplements you're right I don't buy them from FFC...way too expensive. I get mine from Vitacost...very good range of products and wholesale prices.

    As for the copper. I know I'm low from taking a hair mineral analysis. This is something the FFC knows nothing about, which I'm a bit surprised because of the widespread use of this technique. At any rate I get mine done through SANASCAN which does not require a doctor or naturopath to submit it for you so the cost is quite low - $85 - and it comes back with a very good report and explanation of the results.
  15. spiritsky

    spiritsky Member

    L-tryptophan is generally very expensive. I get mine at Vitacost for $17 for 90 500mg caps. It's the Doctors Best brand. It works well for me but I've heard of one person on the board who didn't like Doctors best and uses something else. But I like it and it's relatively cheap.
  16. spiritsky

    spiritsky Member

    To stay alkaline I bascially follow the priciples outlined in Dr Robert Youngs book "the PH miracle". There are alot of other books out there on the topic and I wouldn't know if they're good or not since I haven't read them.

    Basically to stay alkaline you need to reduce your intake of high glycemic foods and get more fresh raw green foods into your diet. Salads are the mainstay of my diet. I eat at least 2 and sometimes 3 green rich salads a day with a healthy dressing made from Flax oil and lemon as a base. I stay away from carbs in a big way as they break down in your body into simple sugars and feed the candida. I also eat fruit in moderation staying away from bananas and of course stay away from any sort of prepared sugary foods, cakes, candies etc. There's an 80/20 rule when your eating alkaline, 80 percent of a meal should be alkaline foods and 20 percent acid foods. So you might have a big salad with a small portion of rice. Or a big salad with a small piece of broiled wild salmon or free range chicken.
  17. spiritsky

    spiritsky Member

    Muscle twitching for me was mostly in the calves but sometimes would spread all over my body. They weren't cramps but fine to moderate twitches that were persistent and non-stop all day and night. They really gave me sleep problems but like I said they basically a non-issue now. They are still there, especially when under stress of some kind but are not that noticeable and don't effect my sleep any more.
  18. ldbgcoleman

    ldbgcoleman New Member

    So happy to hear you are better! And for those thinging about Atlanta or who have an appointment- i have been a patient there for a year and I also am much much better. My case was a little more complicated than Spiritsky. I also feel it has been worth every cent! Lynn
  19. JolieLuLu

    JolieLuLu New Member

    Spirit-
    How does it feel when you wake up in the morning KNOWING positive change has come your way? You must feel a rebirth of sorts:)
    I hope I have the same success at the FFC clinic. I got back some of my blood work and i already know my thyroid is off and my ferritin levels are extremely low. More results coming in a few days.

    Cheers to your new health!
    Jolie
  20. Scapper

    Scapper New Member

    How very thoughtful of you to lay out your regimen in such detail. I enjoy your posts, knowing you focus on natural remedies and diet.

    My question for you is regarding L-tryptophan, do you happen to know how far away from protein this needs to be taken? Sometimes I eat dinner on the late side and I'm not sure if this is effecting my absorption.

    As always, I appreciate your input. Thank you again for sharing your progress in detail. So nice to hear you've gotten so much improvement. You really work hard with your food/alkaline issues! This piece jumped out for me and is one that needs improvement. Any encouragement to do so is appreciated :)

    thanks again, scapper