Progress Notes 6 months after starting at FFC

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

  1. spiritsky

    spiritsky Member

    Another long update for those who might be interested.

    Progress continues after 6 months at the FFC , still getting stronger and getting some very sound sleep.

    Personal Discoveries
    --------------------

    1) Made a major personal discovery regarding Tyrosine. Don't take Tyrosine and Iodine together or you'll go hyperthyroid really fast. I was using white iodine to kill the bacteria in my acne and it was working well but I didn't realize that Tyrosine plus Iodine makes Thyroid hormones. That's why I kept having to reduce my Tyrosine intake. Now I've dropped the Iodine and can take the Tyrosine, but instead this month I'm taking Phenylalanine (a precuror to Tyrosine).

    2) Made another Major discovery with my sleep disorder. After reading about some people on the board who have used Mirapex for muscle twitching I thought I would get a script for it and try it out. It sure did work well and I slept deeply every night. The only problem was that I was so intensely groggy during the day that I had to stop after 8 days. BUT, it did make me realize that I have a dopamine issue. Not enough dopamine causes muscle twitching (I didn't know that, that's all that parkinsons disease is - lack of dopamine) and as a result you can't get into the deeper stages of sleep for very long. On top of that, I also know from my last hair mineral analysis that I have a copper deficiency. Copper is also of major importance in maintaining proper dopamine and norepinephrine levels. So, now I realized that what I need is to raise dopamine, by (a) getting more copper and (b) taking precursors to dopmaine such as Tyrosine and Phenlyalanine. I've been doing that for about 2 weeks now with good success.


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

    1) Starting taking DL Phenylalanine, 2000mg in the morning. Big improvement in alertness and less sleepiness and yawning during the day. Seems like I'm sleeping better also.

    2) Started taking more copper, 10-20mg daily in 2mg tabs every hour or two. Can't take more than one at a time or gives me stomach upset.

    3) Stopped taking Ashwagandha. Was making me too groggy the next day.

    4) Increased Ribose intake from 500mg to 1000mg daily.
    5) Reduced Testosterone intake to 120mg daily.
    6) Dropped Growth Hormone slightly to 1/8th IU daily

    7) Started wearing a sleep mask. First time last night. It was great. Total blackness even with the light on. Slept great, deep and long and had a great day today!

    8) Stopped taking colostrum. Didn't feel I needed it.

    9) Stopped taking additional Iron until I get the results back from my latest hair analysis. I think I'm ok on this one.


    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. I feel like I'm 25 years old.



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

    Thyroid - I'm off the thyroid hormones now for the last 8 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 1 iu daily, 6 months ago but now it's down to only 1/8 iu daily. That's only $1 a day. This is one I don't think I'll ever give up.

    Testosterone - Reduced from 160mg to 120mg 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.

    Adding the Phenylalanine and boosting copper seem to be helping with the muscle twitching.

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

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

    1) Hormones - Testosterone 120mg, Growth Hormone 1/8 iu, DHEA 25mg, Pregnenalone 100mg, Progesterone 50mg

    2) Extra Minerals:
    10-20 mg copper - in 5-10 divided doses
    50mg manganese

    3) 1 Source Naturals vit/min complex

    4) 2000mg DL Phenylalanine
    5) 500mg N-acetly 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 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 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. namow

    namow New Member

    Sounds like you are really working hard at your treatment and it is paying off. Congratulations!
    I hope I will be telling my success story since I'm going to FFC
    Keep it up!
  3. intensemom

    intensemom New Member

    I am so glad that you posted and update. I too am going to the FFC. I am not having great luck; but am doing okay. I am very happy that you are doing very well!!

    I do have a question for you....what sleep disorder are you diagnosed with? Is it Restless Leg Syndrome or Alpha Intrusion?

    Thanks again and please keep posting!

    Tracy
  4. ldbgcoleman

    ldbgcoleman New Member

    I am so happy for you! keep telling your story. I also am still doing much better after starting FFC treatment one year ago. Life is good and I would probably be bedridden by now if I hadn't made that first appt and gone for it.

    Keep up the hard work! Lynn
  5. ANNXYZ

    ANNXYZ New Member

  6. spiritsky

    spiritsky Member

    They've never acurately diagnosed which sleep disorder I have but based on my own symptoms (constant muscle twitching) and positive response to Mirapex and dopamine, I would says it's RLS...
  7. ANNXYZ

    ANNXYZ New Member

  8. Hootie1

    Hootie1 New Member

    Very nice!! I am also being treated at the FFC- I'm working through the antivirals right now. I tested high for EBV, HHV6, C. pneumonia, mycoplasma, and candida.

    I didn't see that you were being treated for your EBV and candida?
  9. Tantallon

    Tantallon New Member

    Spiritsky thank you for posting this, it's the nearest people in the UK get to hearing about the FFC treatment regimes.

    Cheers
    Sue