Progress Notes 5 months after starting at FFC

Discussion in 'Fibromyalgia Main Forum' started by spiritsky, Apr 14, 2006.

  1. spiritsky

    spiritsky Member

    Another long update for those who might be interested.

    Progress continues after 5 months at the FFC , still getting stronger and getting some very sound sleep.
    I've been working 4 hour days for the last 3 months and will be going back to work 6 hours a day starting next week.
    Constant Muscle twitching in the legs is on it's way out after adding Ashwagandha and Progesterone for sleep - For me, I

    think the twitching is related to sleep, the better I sleep the less I twitch.

    I feel as though I'm very close to going into remission.



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

    1) Stopped taking thyroid hormones. Don't need them anymore. Now I just take 250mg Tyrosine in the morning for thyroid

    support.
    2) Started taking Ashwagandha for sleep and added stamina.
    3) Started taking 50mg oral progesterone at night. This has made sleep deeper and more refreshing.
    4) Reduced Ribose intake from 6000mg to 500mg. It was too stimulating.
    5) Also stopped taking the Energy Extract from the FFC. Was expensive and wasn't making much difference.
    6) Slightly reduced Tryptophan intake to 750mg.
    7) Reduced DHEA intake to 25mg. My DHEA numbers came in very high this month.
    8) Reduced Testosterone intake to 160mg daily - Testosterone levels are right at the top of the range now and getting too

    much body acne.
    9) Increased Pregnenalone to 150mg daily - numbers are still low and not rising.
    10) Dropped Growth Hormone intake slightly to 3/16th of an IU. This month, numbers came in about 10% above the range.

    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 about 8 months ago 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.

    Also, I started experimenting with GABA, Theanine, Valerian and Chamomile for getting a better sleep.


    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

    don't want to push it just when starting to do well.


    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 10 pounds in mass, and the whole body is feeling more toned,
    strong and resilient.

    Sleep is almost where I want it. I'm off the Ambien and able to fall a sleep, and sleep through most nights waking up feeling

    pretty refreshed.



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

    Thyroid - I'm off the thyroid hormones now for the last 4 weeks. My doctor at FFC says it's not unusual for some people to

    have their thyroid condition heal. Could be from the testosterone and Growth Hormone which both help the thyroid and the

    entire body.

    Growth Hormone - Started with 1iu daily. After 1 month brought it down to .75, then .5 then .25 and now at .18 iu per day.

    That's only $1.50 a day. This is one I don't think I'll ever give up.

    Testosterone - Reduced the dose from 200mg to 160mg daily. Getting too much acne on the back and I don't think I need as

    much. Feel the same at 160 than I did at 200.

    DHEA - Dropped from 50mg to 25mg. My DHEA numbers came in too high this month.

    Pregnenalone - Gone from 100 to 150mg daily. Number came in low again. This one just doesn't want to go up

    Progesterone = started with 50mg oral at bedtime. Has really made sleep more refreshing.


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

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

    asleep.

    I started with 500mg GABA, 200mg Theanine , 1mg Melatonin and 900mg Valerian. I experimented for about 2 months with varying

    doses and varying success. Some nights I would still need 5mg Ambien to finally nod me off, but I was at least sleeping

    better and waking less frequently.

    Then I started to add Tryptophan and dropped the Valerian and Theanine. This made it much easier to fall asleep and sleep

    through the night but sometimes I still couldn't get to sleep well and had to take the Ambien to nod me off. Hmmm, why?

    Then I tried taking the Tryptophan 2 hours before bedtime and took the GABA,Melatonin right at bedtime. This was the
    best thing I did. By taking the Tryp 2 hours early I was primed for sleep already and could easily nod off. The GABA and

    Melatonin are quickly absorbed so It works well to take them just before hitting the sheets. Now I don't need the Ambien

    anymore and have a full unopened bottle of 100 pills just sitting on the shelf - gathering dust :)

    I also started taking my daily dose of DHEA with the Tryptophan instead of in the morning. DHEA has some cortisol blocking

    and balancing functions which is helpful for staying asleep. The effect is subtle but every little bit helps.

    Lately I've also added Ashwagandha and Progesterone to the nightly regimen and they've both made a big difference to getting

    a refreshing sleep and more energy the next day.

    Current doses I'm taking are.

    750mg Tryptophan - 2 hrs before bed on an empty stomach.
    500mg Ashwaganhda - 2 hrs before bed
    25mg DHEA - 2 hrs before bed
    50mg Oral Progesterone 2 hrs before bed.

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





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

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

    1) Hormones - Testosterone 160mg, Growth Hormone .18iu, DHEA 25mg, Pregnenalone 150mg, Progesterone 50mg
    2) Extra Minerals:
    60mg chelated iron - in 2 divided doses
    8 mg copper - in 2 divided doses
    50mg manganese

    3) 1 Source Naturals vit/min complex

    4) 250mg Tyrosine
    5) 500mg N-acetly cysteine
    6) 600mg Calcium citrate/malate
    7) 300mg Magnesium citrate
    8) 500mg Colostrum
    9) 600mg Potassium citrate/aspartate
    10) 500mg D-Ribose
    12) Creatine Monohydrate - 5 grams daily.
    13) 1 tbl spoon silica gel every other day.
    14) 1 scoop Inner Light Super greens daily.
    15) B12 shot about once a week - 1000mcg
    16) an additional B50 complex.

    17) What a list...can't believe I have to take all this stuff, but much gratitude anyway.



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

    More of the same:

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

  2. Tantallon

    Tantallon New Member

    with the FFC regimen. Lots of info to take in here. We don't have the FFC centres here in the UK but we can read into your info and draw what we need from it.

    Thank you for posting this
    Sue
  3. alaska3355

    alaska3355 New Member

    I'm so glad to hear you are improving...it sounds like you're on the right track and taking it slowly. What kind of job do you have? Anyway, best wishes and keep it up! Terri
  4. cindye

    cindye New Member

    Thank you so much for your update - could not have been posted at a better time. My 22-years old daughter had her second visit to the FFC in Atlanta on Thursday and came away pretty overwhelmed - I think this will give her a lot of encouragement - expecially since she will see that it is possbible she will not be on all of these meds forever!

    Thanks so very much! Easter is a new beginning and that is what she is about to do - start the road to a new beginning! Happy Easter! I hope you will continue updating us as you improve!

    Dorothy
  5. spiritsky

    spiritsky Member

    I'm glad you're finding these reports useful. I wasn't sure if I was putting too much info in them or not...I'll keep posting every month for the time being.[This Message was Edited on 04/15/2006]
  6. elsa

    elsa New Member

    I am so happy to hear your good news! Remission !! YEAH !!! Just a hop, skip and a jump away. Good for you! Feels pretty good doesn't it?!?

    My biggest problems were remembering to stick to my regimen once I started to feel better. I was out doing things and living life and not watching the clock and paying attention to my treatment plan.

    Actually went 4 weeks without my testosterone shot (self-inject 1xwk) and couldn't figure out why I wasn't able to go as full tilt as I could before. DUH! Dumb girl!

    Thank goodness for my daily log book of all I have to take in. A little investigative work told me how far off the mark I had gotten.

    Won't mention the other things I was "hitting or missing" on. Suffice it to say my husband and I have decided that I will have to take my "maintenance" stuff until someone figures out why so many systems become dysregulated and what bug (?) damaged the mitochondria.

    I feel very comfortable in the thought that I can heal ... I just don't think I can heal and then stay there without my maintenance program.

    My last appointment with my "main" doc was just recently. He was pleased enough with my progress to say we don't need to meet again for another two months. If all goes well we will try to tweek some things. Maybe back down on one or more items and see how I do.

    I told him that if I had to stay on everything I am right now I would be happy .... It's alot comparatively speaking but I feel good. Whatever it takes as far as I can see.

    Thank you so much for the effort you put into your post. It will undoubtedly help others and encourage them to put one foot in front of the other. Remission is a real thing and attainable. Thanks for posting positive, informative stuff.

    I try to come on as often as I can. Once I started to feel better it was important to me to maybe help others as I was helped.

    Also, nothing says I can't slip up and get the monster back in high gear. I think this board and the people who frequent it are a lifeline as long as a cure alludes us.

    Positive thoughts for your continued great success. Sounds like you have a great support system / fan in Anne. My husband has been a godsend as well. Not only helps in the daily maintenance in-take, day in and day out "chores" and running interference for me when needed, but simply brings a smile to my face just by being there. I am a very lucky girl!

    He is my hero, yet he says I am his for not giving in to CFS/FMS. I don't agree exactly .... What choice did I have? LOL

    Very long post .... sorry about that. I just wanted to thank you for your efforts, cheer on your good news and share some "funnies" that may creep up BECAUSE YOU FEEL GOOD !! Lol

    Nothing like forgetting to take what brought you to the dance because you were having too much fun dancing!! Thought I give you a heads up on that little possiblity.

    Take care,

    Elsa
  7. spiritsky

    spiritsky Member

    Thanks for the good advise. At this point I don't think I have to worry about missing on my regimen, I'm so focused and feeling so good that missing a day on any of my "stuff" would be inconceivable and actually a bit terrifying...but...thinking down the road...I can see that when you start feeling good for a while, you can start to slip. I've already been that path with the alkaline diet...been on that for about 2 years...Sometimes I slip a bit and just want to eat cake!!! But then the next day my body tells me to rein it in fast :(((

    Good to hear your doing well also. And yes its satifying to give something back by helping others along the way.

    blessings...