Progress Notes after 12 months

Discussion in 'Fibromyalgia Main Forum' started by spiritsky, Nov 13, 2006.

  1. spiritsky

    spiritsky Member

    Havn't been on the board for many months and thought I would post.

    12 Months ago I started my healing journey at the FFC in Torrence and although the last time I saw them was over 6 months ago I continue to improve. But I want to just make it clear the FFC was not where I got all my help. They were only instrumental in taking my hormone imabalances seriously and getting me to realize how important sleep was
    but they didn't solve all my problems , just pointed me in the right direction. I just don't want people to think they have all the answers...but they had some important ones for me.

    The main areas that I beleive helped me in getting me on my feet and back to work are:

    1) Hormones
    2) Good diet, staying as alkaline as possible (FFC doesn't know much about this area I found).
    3) Mineral balancing (FFC does not do this and if you don't have a background in chemistry you should probably work with a professional in this area)
    4) Sleep
    5) Positive attitude...very important to not give up. There is knowledge that you don't know today, and you have to believe that they it be revealed to you. Just keep looking and asking. Just to have the positive intent is the main thing.



    Personal Discoveries these last months
    ---------------------------------------

    1) Finally got to the root of my copper deficiency...we'll maybe not the reason for it but I finally found a supplment that worked for me (MesoCopper)...I tried everything but this is the only thing that worked. And as I read on the subject I found that I could deal with the copper problem my iron deficiency would take care of itself. And it did, not only that but my subborn Manganese deficiency also went away. Low Copper seemed to be the problem. I no longer have any mineral deficienies other than a slight Molybdenum issue. I've gone now from a slow oxidizer to a fast one and no longer need any Thyroid hormones and take just a very little bit of Testosterone every day and I attribute that in part or whole to overcoming my Copper deficiency. I'm not suggesting people go out and start popping copper tablets, too much copper can be a very bad thing...you really need to know whether your deficient or not first before starting out down this path. Getting someone to do a Hair Mineral analysis for you is the first step.

    Another interesting thing about taking the Colloidal Copper was that I went through a mild herx for about 1 to 2 weeks after starting it. I believe this had something to do with the last of the Candida dying off since Copper is a strong killer of Candida.


    The next thing I'm going to try is MesoGold. I've heard some good things about Colloidal Gold and RLS. RLS is really the last thing that I have that I'd like to get rid of.

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

    1) Stopped taking Thyroid hormone

    2) Take only 25 mg Testosterone daily as a maintenance dose. Down from 200mg at the high point of the program.

    3) Also stopped taking DHEA and pregnenalone and progesterone.

    4) Stopped taking anything for sleep except for the occasional Ambien...just a small piece about 2.5mg will do.

    5) Dropped the D-Ribose...doesn't seem to do anything for me
    ...now I'm not sure if it ever did.

    6) Dropped the Creatine Monohydrate. I don't really need it and it's not necessary.

    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
    --------------

    What can I say, I'm pretty much back again. I can hike, workout, stay up late (if I want to), miss and hour of sleep and not be exausted. I'm back to work full time, cook , clean and do everything again. I would say I'm back about 90%. I think there's always room for improvement and I still have some symptoms of RLS although it is better.


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

    Growth Hormone - steady at 1/8 iu daily.

    Testosterone - Reduced to 25mg.



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

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

    Only use a little Ambien if I need it. But always use my sleep mask. The sleep mask has been a big help especially when the sun comes up early.

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

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

    1) Hormones - Testosterone 25mg, Growth Hormone 1/8 iu

    2) Extra Minerals: none right now but want to take Colloidal Gold for my RLS.

    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)500mg Super Oxide Dismutase
    10) 1 scoop Inner Light Super greens daily.
    11) B12 shot about once a week - 1000mcg
    12) an additional B50 complex.




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

    More of the same:

    1) Stay alkaline
    2) Want to try Colloidal Gold for my RLS.
    3) Continue with weaning off Testosterone.
    4) Going to try going off the Tyrosine and Phenylanine. I'm not sure I need them anymore but will finish my current bottles that I have.

    4) Gratitude, Gratitude, Gratitude...

  2. Gosia

    Gosia New Member

    Hello there.

    I've been taking L-Dopa for few months already. I no longer have RLS.

    Good luck. Gosia
  3. alaska3355

    alaska3355 New Member

    Good to hear of your progress.....I agree that attitude can be a big player in your health.....think positive and keep searching! Take care, Terri
  4. morningsonshine

    morningsonshine New Member

    Great post, thanks for sharing!
  5. spacee

    spacee Member

    Taank you so much for your valuable information. Amazing!

    Spacee
  6. deliarose

    deliarose New Member

    thanks a lot for posting. Means a lot to us who are still working towards health.

    If you check back, maybe you could answer a few questions for me.

    What did you do to keep alkaline, besides taking a green food supplement? Do you have any books or sites you can recommend on this topic?

    What kind of practitioner helped you with the mineral balancing? And how did you keep a postive attitude?

    Thanks and hope you're enjoying life.
    Delia
  7. TwinMa

    TwinMa New Member

    So glad you are on the right track!

    Do you really feel that the hair mineral analysis was valuable? Where did you get it done? How often does it need to be done? Cost?

    After FFC, who did you go to for help with hormonal therapy? Who managed all the mineral balancing?

    Thanks for continuing to post your progress notes! It's wonderful that you come back to share what you have learned. It helps us all!
  8. spiritsky

    spiritsky Member

    I still get my hormones from the pharmacy that the FFC works with. I don't need to see the doctor for getting refills, although I think one day they might flag for and make me see the doctor for a followup but so far it hasn't happened.

    As far the the mineral analysis, yes, I think it was very imoportant for me. I get mine done through SANASCAN, it's not too expensive and I've been doing it every 3 months, but soon I'll just do it every 6 months. They put out a very comprehensive report on it but you are left on your own as far as a treatment plan. This would be better for someone who feels comfortable with Chemistry and self treatment otherwise I would look for someone who has some experience and can work with you to get your minerals balanced. But at the minimum if you do get it done on your own you'll at least see if you have any severe deficiencies/toxicities and can then decide if you want to find someone to help you.
  9. Scapper

    Scapper New Member

    So happy to hear you've had a major breakthrough!!!

    I was thinking about you the past few months and wondering how you've been. Thank you so much for outlining your past and present protocol.

    What hit me the most was when you said how baffled you were when doing all of your supplementation and diet and you were still so sick. Then, seeing that you had a major pituitary dysfunction, along w/ other issues, it began to make sense.

    The hard part is that each of us, although all similar in symptoms, can be very different in the cause. But, hearing your success gives us each hope that IT IS POSSIBLE......something I need to hear daily to give me the strength to keep searching (and believing!).

    Thank you again for taking the time to come back and share your journey in detail. My only hope is that one day I can do the same. For now, I'm still battling the insomniac beast!

    Again, very happy you are doing so well....ENJOY :)

    SCAPPER
  10. TwinMa

    TwinMa New Member

    Thanks for the info, spiritsky. I, too, went to FFC for a time. They put me on T3 hormone through ITC Pharmacy. I stopped going to FFC and ITC filled my Rx for about 6 more months. Then ITC said I needed to get another Rx, either from FFC or from another doc. I didn't want to go back to FFC (too much $$$). So I asked my PCP to prescribe the T3. She wouldn't do it because my TSH was too low. I ended up weaning myself off T3.

    That was probably more info than you wanted to know, but the message is: make sure you have a place lined up to prescribe your hormones, if you want to continue them. Because if you are going through ITC, eventually they will insist you get another Rx.

    Thanks for the hair analysis information. That is interesting.

    What kind of practitioner do you go to to interpret the results? I can't imagine a regular MD would have a clue. Naturopath?
  11. spiritsky

    spiritsky Member

    Yes, a naturopath might know about hair analysis, but in my experience there are not many who do it. It's probably best to google up someone in your area or someone you can work with over the phone. But, as I said, with SANASCAN hair analysis they will send you a very good report with a written interpretation of what your problems are and with suggestions for how to correct them through diet. But it's just written, so there's nobody to explain to you more about your results. But at least you'll know where your problems lie and then you could conceivabley go to a naturopath and figure out a plan of how to correct any imbalances. Good luck! Ane you can always ask for help from the message board...
  12. Mikie

    Mikie Moderator

    It's always good to see our members making progress.

    One of the things which can deplete copper in the body is taking zinc supplements. Zinc has been touted as helping with flu and colds but it should only be taken on a short-term basis unless one also supplements with some copper.

    Thanks for posting and continued good luck.

    Love, Mikie
  13. Slayadragon

    Slayadragon New Member

    Thanks very much for the post! This is very interesting and I am glad you're doing better.

    What has your experience with growth hormone been?

    What is RLS?

    I've not looked into fixing minerals a whole lot because the few tests that I've had (years ago) didn't show huge imbalances. It sounds like it might be something to investigate once I get to the next stage in my treatment though.

    The alkaline diet is interesting, although with 20 food allergies (in addition to not eating sugar and avoiding white flour already) dealing with the issue of food is already driving me out of my mind. However, this sounds like something to put on the back burner as well.

    Thanks much for sharing. This is very helpful.
  14. Slayadragon

    Slayadragon New Member

    You seem to know a lot about minerals, and so I thought I'd ask you what you think of colloidal silver.

    I have some of the Meso Silver (which I believe is made by the people who make Meso Copper) but have not yet tried it.

    Thanks....
  15. spiritsky

    spiritsky Member

    Yes I also have their colloidal silver. I only use their products for the colloidals since they are by far the best. I only use the colloidal silver in the winter now if I get the sniffles. I have a spray bottle filled with it and use it instead of some other kind of nose spray. It seems to help. But I don't have any kind of constant infections like I used to have so I don't really need the silver on a regular basis. If you're going to take it internally, make sure it's on an empty stomach. I usually take mine 15 mins before breakfast.

    Also, I just started using the colloidal gold four days ago. I think something is happening but it's a bit early to tell. I'm feeling more relaxed and I think my muscle twitches (RLS - restless leg syndrome - you asked about what that was) are going down, but it is only four days. Hard to really make a claim on that one.

    Good luck.

    Almost forgot to add. You wanted to know about growth hormone. I think it's been great. I've been taking it for about a year now and only need a very small amount now. I started with what's called 1 IU (1 international unit) and now only take 1/8th of an IU a day. I has to be injected using an insulin syring just underneath the skin. It's not a big deal and I do it in the morning before breakfast...takes just a minute to draw and inject. Since starting I've gained about 20 to 25 pounds of weight, not fat, just muscle and feel like I'm my normal weight. I've always had trouble gaining muscle mass even when I would excercise. The testosterone also helped me in this regard. Another benefit is that your skin looks better and younger (that's why most people are taking it) and the whole body just functions better. But eventually when I feel I'm at a certain point I'd like to let this one go and just use the testosterone if I can. (I'm hoping to eventually not need any hormone replacement)
    [This Message was Edited on 11/25/2006]
  16. Slayadragon

    Slayadragon New Member

    Spiritsky,thanks for your comments.

    I definitely think that colloidal silver is a good nasal spray. I've used it for sinus infections (mine are almost always fungal) and it's helpful.

    I've never thought of using it for "acute" things because I don't "get" colds and flus. I do, however, sometimes get the scratchy throat that preceded those sorts of illnesses when I used to get them.

    I used to think my system was in super-attack mode and killed invaders off. Now I think that maybe my system is so overloaded with viruses that when another invades, it says, ho, hum, and doesn't bother to create phlegm of fever to try to fight it off. I could be wrong, of course.

    Anyway, since I started thinking maybe there's something to this theory (someone else on the board suggested it---I'm not taking credit), I've been using ProBoost whenever the scratchy throats hit. Maybe colloidal silver would be a good adjunct.

    I tried internal colloidal silver at the high dosages they recommended for maybe a week and didn't feel it did anything. There were other things I wanted to try at the time, and so I put it aside.

    I wonder if it works at killing viruses, etc., but not very well. If so, perhaps if I knock out a good percentage of the bugs with the AV I'm taking (Famvir at the moment), colloidal silver would be a good adjunct. (I don't expect to get to a 10 just on the AV, and so I'm trying to think of as many ways to help it along as possible).

    Good idea to try later. Glad your post made me think of it, and also that it made me feel like the brand I chose (simply based on info I read on the Internet) is a good one.

    I have a whole lot of hgh in my refrigerator for a while and took it at varying dosages for a goodly length of time. It really wore me out. My theory is that it channels a lot of available energy toward repair---which is great if you _have_ a lot of available energy (which I don't).

    I will say that it worked wonders when I had a sprained ankle, though. I had very badly sprained it and after several weeks was making little progress in healing. Finally I decided to try the hgh, and it was almost totally better in two days.

    I don't get injured a lot these days, but it's nice to have a tool about in case I do. (That stuff is supposed to be great for healing from surgery, and so it makes sense it would work for that purpose.)

    The hgh did make my skin look _great_, I will admit.

    My hgh levels at one point were measured as being pretty low (which is how I got my insurance company to pay for all that hgh). I'd like to use it if I could, since keeping the body in good repair is obviously important.

    That's not been possible (if I ever want to do anything but lie in bed) thus far. But again, maybe if I could get my ridiculously high viral load down, that would be another good addition for me to go back to.

    Thank you for posting, therefore. Thinking about these issues has given me some good ideas for things to try in the future, which is what I'm looking for at the moment.