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Sally's supplements

Discussion in 'General Treatment' started by Sallysblooms, Dec 29, 2011.

  1. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Southern USA
    I have been ill at least 20 years. But over 39years ago, I had to have a very serious surgery to my middle ear in 1985. The doctor thinks my vestibular nerve was damaged by a virus. So that was when I was about 20 years old. Tis goes back a long way. I started needing naps at about age 30. After a move across the country, I got very ill and kept getting worse. After loser docs, I finally found good ones. I was for b12 level and other tests. My b12 was barely on the scale. SO low, I was given shots and improved a lot.

    I was guided with diet and supplements. I had not been eating red meat, this thinking that was good....ha I never did that again.

    Epstein Barr is what I fight with supplements. I can't really say it was gradual but I guess it was a bit gradual. Once I moved it was BAM! Fast.

    POTS began after a surgery and also an antibiotic before that. A few months later I was in a grocery store, unable to walk all of the sudden . It was so strange to feel like I would faint. This happened a couple of times, small things happened, then on our anniversary three years ago, my autonomic nervous system stopped working. I now know it is autonomic neuropathy. I am slowly healing the nerves with supplements and no sugar,bad carbs, gluten... slow but steady healing. My hubby and I are happy.
  2. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Southern USA
    30, not 39 years.. My iPad is not connecting right now.
  3. alice111

    alice111

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    Hi sally,
    I have a few questions for you!
    1. who is your doc?
    2. are you taking cortisol? - if so how much, what form - hc? prednisone?
    3. what form of thyroid are you taking, dessicated? synthetic t3?
    4. what brand of coQ10 do you take?
    5.what are the doses of your hormones- you mentioned dhea, pregnelone, etc
    6. what was the ebv treatment, and how much did you improve?

    thank you! so good to hear positive stories and im so happy for you!
    jasmine
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    australia (brisbane)
    From what i have heard from others, unfortunately Sally doesnt come here any more as she was possibly bullied away. She had good info on supps etc I think she got most of her supps from her doctor not from a place like iherb. i didnt think she used hc or pred. i know she didnt use dhea but 7-keto dhea.

    comeback Sally, we miss you!
    cheers!!
    Parismountain and Sallysblooms like this.
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    australia (brisbane)
  6. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Southern USA
    Thank you Heaps. I miss ya!:) I got an email so I wanted to respond to Jasmine.

    You can find an integrative doctor on sites like these below. I am sure there are more places also.
    http://www.anh-usa.org/main-menu/resources/find-a-practitioner/

    http://integrativemedicine.arizona.edu/

    I am not taking cortisol anymore.
    My thyroid is not synthetic. Compounded by a pharmacist.
    I think my CoQ10 is from Designs for Health.
    My hormone doses vary. I get testing twice a year. Saliva and blood testing.
    EBV treatment is a lot of things. Getting my immune system working to fight it. Many people have it but they keep it under control with the immune system. Mitochondria are treated with CoQ10, lcarnitine etc. Supplements bring me up to what I need with B12, D, hormones, etc.

    With years of the right supplements I improved so much. CFS is doing fine. My Dysautonomia is my main problem now. There is fatigue with that also but mainly other symptoms. That is from Autonomic Neuropathy after surgery and/or med. SO, now I am coming back from that with supplements for the nerves/nervous system like Benfotiamine, alpha lipoic acid, no or low sugar and no bad carbs. The nerves are so sensitive so I do what I can to help them heal. I am doing much better. I relapsed after Christmas. We traveled A LOT and shopped etc... Took about a week to feel better from getting very dizzy mainly. YUCK. Better now. :thumbsup:
    Parismountain, Nielk and heapsreal like this.
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Albuquerque
    Parismountain, Nielk and heapsreal like this.
  8. alice111

    alice111

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    thanks sally! sorry to hear about your negative experience on here, thats really terrible especially since you gving out information that has helped you is soooooooo helpful to people like me!
    if you dont mind just a few more specific questions..?
    -why did you stop the cortisol?
    -what dose of thyroid meds are you on?
    -you are taking keto dhea, are you also taking pregnelone?

    ps sounds like you have things pretty undercontrol but I thought I would share something that helped me with you. Like you I have dysautonmia, and I still have alot of remaining symptoms - but my dizziness and episode of faiting are under control now with SALT WATER! i have been taking 1 1/2 tsp of unrefined sea salt twice daily in water, I no longer get dizzy, faint, etc. Still very tired, and other symptoms, but hey whatever helps right? anyway thought you might wanna give it a try! thanks for your help :) :)
    jasmine
  9. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Southern USA
    Low dose of Thyroid. I have my big laptop on my lap right now. I will try to remember to look when I get up. Just depends how much you need.

    I stopped cortisol because my last saliva test showed better levels in the morning.

    Yes, Pregnenalone is important for me since it is good for the nerves.

    Salt is not helpful for me. I have POTS, but not NCS or other things that cause low bp. My bp was high, now normal. I eat normal amounts of salt. The key for me and my POTS/Dysautonomia has been healing the nerves so they and the muscles work to help the blood vessels get the blood up to my head.

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