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Having some issues.....

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by traray, Jul 22, 2013.

  1. traray

    traray

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    Hello! I am new here and so grateful for all this information! But there is alot of info here, I have been scrolling through pages and pages of posts. So I apologize in advance if I ask a question that has already been answered.

    I am 48 yo female with FM. Last year had glutathione infusions and glutathione supporting supplements including NAC. Had frequent UTIs for many years and was treated with a weekly preventative dose of Cipro until I became allergic to it. Don't know what happened in 2005, ran a fever for 4 months, labrynthitis and BPPV, first time on the couch for months at a time.

    Currently, lots of muscle pain, mainly hips, neck, shoulders, and arms from the elbows down. Joint pain that jumps around from day to day. Treating mental slowness with Choline/Inositol and poor sleep with melatonin and GABA, Naturethroid 225 mcg daily and do all biodentical hormone supplementation creams and 50mg iodoral.


    Before I found your protocol, I had been taking B-Right 2-3 times a day with other supplements, most of which are your supporting factors. I've tried Sam-e a couple of times because it is so great for pain. The first time I only managed to stay on it a few days because the dosage was way too high - 400 mg, I developed seratonin syndrome. A few weeks ago I started again at 100 mg each day. The effect was fabulous, I felt tremendously energized and could think quickly and clearly for about a week. Then the effect diminished and I felt terrible again. So I only take 100 mg every 3-4 days to help with muscle and joint pain. I do not get the "fabulous" feeling anymore with it. Rather I feel very tired and down on the day I take it, with a dull headache. That is what happened today - but not with the usual headache.


    I am 12 days into the protocol. I am not supplementing in the recommended order - started with local health food store brand mb12. The next day I was superhuman: energized, my thoughts raced and flew through my head joyfully. I ran on the treadmill, lifted weights, cooked, cleaned and for the first time in a long time, gave thanks continually to be alive. This blessed state continued but decreased slightly each day until today, which has been a very bad day. And I took Sam-e (100 mg) yesterday and today as well, thought maybe now with all the other things in place I might tolerate it.


    Your recommended supplements came in about day 5 and I added ad12, methyl folate and TMG then. Alot at once I know, but I was not patient at this point in feeling amazing. This is what I'm taking:

    1 3000 mcg ad12 morning and afternoon
    2 5000 mcg mb12 4 times a day
    methyl folate 800 mg 2 times a day
    B-right 1 capsule 2xday
    1 scoop TMG morning on empty stomach
    Sam-e 100 mg (last two mornings, before that every 3-4 days)
    Potassium 99mg, 1-3 times a day as needed
    And the supporting cofactors, except aceytl-l-carnitine, have yet to purchase that.


    1. Do you have any idea what is going on with the Sam-e? How do I proceed, it helps so much with pain, I want to be able to utilize it.
    Thank you so much!


    *****well, I wrote the above last night while waiting to be approved to post in this forum. I was feeling less tired as the evening wore on. Today has been better, feeling more energy clearer thinking and following the protocol except for Sam-E and the afternoon dose of methyl folate. I do have a lingering headache.*****


    2. One last question: I was at my doc's today and he gives 1000 unit methyl B12 injections every two weeks. Is this something I could or should work into the protocol?
     
  2. SOC

    SOC Moderator and Senior Member

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    traray
    Many people with ME/CFS have focus problems that make reading large blocks of text difficult. You might get more responses if you edit your post and include paragraph spacing every 3 or 4 sentences. :)
     
    Plum, Sushi, rosie26 and 1 other person like this.
  3. traray

    traray

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    Sorry, first time here. Had seen where some posts go back and forth asking for more info. Guess I included too much. Should I delete it?
     
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    What sort of testing have u had done etc.
     
  5. SOC

    SOC Moderator and Senior Member

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    Not at all! Just click edit at the bottom of your post and add in some paragraphing. Then more people will be able to read it and you'll get more replies.
     
  6. traray

    traray

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    Only thyroid and hormones. Nothing regarding B12
     
  7. Misfit Toy

    Misfit Toy Senior Member

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    traray, I would think before you start all of this supplementation, you might want to have some testing to see exactly what you need and what dosages. I am no expert by any means, but usually you need a baseline of what is needed to proceed.

    For example, I had testing and I am told to only take a sliver of SAM-E. Not to take the whole pill. These supplements are not to just be taken sometimes at what would be normal doses for many. Also, starting one pill at a time. I am learning this from others on here.

    I would seek out the 23 & Me testing so that you know what is going on and what you need and then be in touch with someone who can guide you. I use LIVING WELLNESS. They help me.

    Head to Caledonia's signature on here. She has a lot of valuable info and might be able to direct you as well. She has had a lot of success with the protocol.
     
    traray and SOC like this.
  8. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    WHOA NELLY! You made the same mistake that many make when they start feeling better. That is doing too much too soon. The next time you are feeling superhuman, do just a LITTLE more than you can normally do. As long as you continue to feel the same or better, GRADUALLY increase your daily activity. Are you familiar with pacing - interspersing periods of activity with periods of rest? If not, do a search on it. It sounds like you are on the way to figuring out a protocol that will work for you.
     
    traray and Plum like this.
  9. Plum

    Plum Senior Member

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    It does sound like you're trying to do a lot all in one go. I have learnt the hard way that because this illness didn't happen over night you can't fix it quickly.

    The most beneficial things for me have been diet (lots of organic veg, meat, gluten and dairy free - I eat potatoes for carb). And The Perrin Therapy has been slowly helping calm my nervous system down. I have tried many things that haven't worked and supplements for me have been one of those.

    I do take a few but they're the ones that I know work. I've added them in slowly and checked for any effects.

    Your sudden burst of energy must have felt amazing and I know how tempting it is to use it up. BUT energy like that is often 'false' and doesn't last. The best way to prolong feeling well is to take things slowly and use your energy on doing wonderful things for your body and mind.

    Take a bath, have a gentle walk, maybe tidy the house a little, sort out some food for the week ahead - this is the things I do when I have more energy and it helps me enjoy my surroundings and feel more calm for longer.
     
    traray likes this.

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