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No Longer Naive in the Ways of The Beast
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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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    I wanted to have this so I can answer questions in chat, etc and show the thread. My CFS of 20 years was doing good, then I got VERY ill with POTS. I have had a long road to go down again. Thankfully, my POTS has improved with my supplements. I am walking again after not being able to even sit up. Took three and a half years.



    I have really good doctors that know supplements so I do not have to guess on dosages and brands etc. I have a schedule of supplements three times a day. Long list. I get really thorough blood tests twice a year, had saliva testing too. Neurotransmitters, vitamins, the whole nine yards. Hormone testing has been very good too.

    Balancing my hormones got rid of my migraines within two days.

    CoQ10 has been very good for my heart rate, bp etc. Correcting all hormone imbalance was the first thing. Bio identical compounded hormones Tri est, pregnenalone, progesterone, 7 Keto DHEA, Thyriod and cortisol. I take powdered Calcium and Magnesium also.

    Supplements for the immune system Vit E, Liposomal Vit C, Astragalas, AHCC, Proboost Thymic Protein, Maitake D drops, Vit D drops.

    Supplements to help the adrenal glands like Adrecor.

    The methyl vits. B12, SAMe etc.

    D-Ribose powder two times a day has been good for energy. ATP under the tongue and Liposomal Glutathione is great!

    Carnetine (Carniclear) and Co Q10 have taken my brain fog away completely. I am sure other supps. helped also, like Pregnenalone.

    I take NAC and Resveratrol.

    5HTP raised the Seratonin level so I could sleep and feel good again. It goes down like other things with stress and illness.

    :) Alpha Lipoic Supreme and also the ALA MAX and Benfotiamine are healing my nervous system and helping the nerves in my feet. Has been great!

    Great things for CFS and POTS for me are Benfotiamine, Lipoic Acid Supreme, Liposomal Glutathione and ATP.

    My multi vitamin is wonderful. Ultra Preventive X by Douglas Labs.

    I add protein powder and First Greens to my smoothie each day. The smoothies are full of healthful foods.

    I take a good fish oil.

    Hope I didn't leave any out.


    All of my supplements are guided by my doctors. Dr. Dzugan is in charge of the hormones. No migraines now. They have a schedule, three times a day for me. They look carefully into the brands for purity also.


    My Probiotic is a good one also.

    This has helped my CFS not be much of a problem now and is helping my POTS that I have had for three years. I was unable to get out of bed for many months, until I could see my doctor and get the tests. Now, I function well and I am happy again.

    For POTS, I stay COOL, do not overdo it, never miss my supplements, drink a lot of water. My bp is usually high or normal, sometimes low. Goes up and down. Before my supplements, it was VERY HIGH, that is wonderful that I rarely have it so high now.

    The only presciption (besides the hormones and Thyroid) is for my bp, to keep it lower, I am slowly getting off of it.

    I also stopped gluten in case I am sensitive since that can affect the nervous system. Cut back on sugar also.

    My doctors are helping me to help the symptoms and support my body so I can heal.
    SaraM, taniaaust1 and Nielk like this.
  2. xchocoholic

    xchocoholic Senior Member

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    Wow. Great info sally,

    Congrats on getting out of bed and on walking. I used a motorized cart for 16 1/2 years.

    Do you know if you have gluten antibodies ? Mine
    have been neg in my blood for years but posituve in my stool tests for 3 years now. Fwiw,
    my blood antobodies were neg before I went paleo even. So these don't appesr to be
    as sensitive.

    I was wondering what you were doing diet and supplement wise. Congrats again. X
  3. Sallysblooms

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

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    My wheelchair doesn't get as much use now, getting lonely, ha.

    I have not had gluten testing. I have no stomach issues at all. I just stopped eating gluten when I read that you can be sensitive and it can cause nervous system problems. Tests do not work for just sensitivity. So, I just eat gfree, really easy since there are so many products, flours etc.

    My diet is a normal diet really. I stopped eating red meat for a while years ago and that was not good. Even eating some fish, eggs and chicken was not good enough. I had B12 levels VERY LOW and vertigo. I now eat lean red meat, chicken, fish (lots) and eggs. I eat a lot of salad, nuts, and fruit. A normal diet.

    The best thing I have is my smoothie every morning. I have made it for years. OJ, banana, apple, frozen blueberries, mango or peach, strawberries (not all every day), I also put in oatmeal, little carrots, whey protein, Green's First green powder, and yogurt. That is an amazing drink and so yummy.

    I have treats like Hershey Kisses and some Cola when I want also. I like eating normal things, but I try to be mindful of sugar and I cut out gluten.
  4. ramakentesh

    ramakentesh Senior Member

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    Thanks for sharing. Particularly interested in the Carnetine
    Sallysblooms likes this.
  5. Sallysblooms

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

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    I take Carniclear, it is really good.
  6. Nielk

    Nielk

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    Thanks Sally for sharing with us.
    I'm so happy that you are improving so nicely. It sounds like you are in great hands and you have great knowledge of what you are taking and what is helpful for you.:)
  7. Ocean

    Ocean Senior Member

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    This is great info, really nice of you to share. Since it's tailored for your specific issues, I guess I can't really apply any of it to myself. I think it's great you found a doctor to test you and find specifically what you need to be taking since one size fits all doesn't work with this illness. I hope to find someone similar one day. Whenever I try supplements on my own, it doesn't end up well. Did you just happen to get lucky finding your doctor or was he/she someone with a known interest in CFS and POTS?
    Sallysblooms likes this.
  8. Enid

    Enid Senior Member

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    Thanks for sharing Sallysblooms.
    Sallysblooms likes this.
  9. justy

    justy Senior Member

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    Thanks Sally! its so good to hear of people doing well and recovering. I am taking a nu,mber of supplements from Dr Myhill and also i see a medical herbalist who adjusts the herbs according to my need, but mainly we work on immune and hormones and in the past anti anxiety. I would love to have more extensicve testing and protocol like you have, but the cost would be prohibitive.
    Still i am making slow progress too. Slow and steady wins the day for me. I have learnt to be patient.
    Take care, Justy x
  10. Sallysblooms

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

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    So glad you have improved Justy!
  11. bertiedog

    bertiedog Senior Member

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    Congratulations Sally, I have also improved from severe dysautonmia but in my case I have done this by breathing oxygen around 3 hours each day. I still take a low dose betablocker to stop the raised heartbeats but the biggest difference came within one hour of breathing oxygen.

    Obviously I was so very low in it as testing on my autonomic nervous proved, it turned out I had less than half the oxygen sats a normal person should have just by lying down and taking deep breaths or sitting quietly doing nothing!

    I am a lot older than you and first got sick in 1979 though didn't have energy issues until around 1996. A lot of damage has taken place but I hope that by getting more oxygen in me I will be able to tolerate the necessary supplements to get rid of yeasts/molds in my gut, raised nickel levels and also I have started Immunovir to deal with some abnormal Herpes viruses I have included Cytomeglovirus. The oxygen is like a wonderful revelation for me.

    Good Luck
    Pam
  12. Sallysblooms

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

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    Glad that helped you Pam.

    I continue to improve, I am very happy!:)
  13. xks201

    xks201 Senior Member

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    Cutting out gluten is probably the next thing I am going to do. I am doing a ton better and am cured, but transient stomach issues remain. I suspect that when adding soil based organisms I will be 100% from 90%.

    It doesn't surprise me you are getting better given the fact you cut out gluten, added low dose 5-htp, added lactic acid reducing supplements (like b1), and fixed your hormones. What probiotic are you taking?

    Your approach is very similar to mine except for probably the probiotic part.
  14. Sallysblooms

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

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  15. adreno

    adreno 3% neanderthal

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    Hi Sally, could you list the dosages for the B vitamins and methylation supps you are taking? How much benfotiamine and lipoic acid do you take? And do you take the full dose (8 tabs) of Ultra Preventive X?

    These are the dosages from the Ultra P:
    Do you take additional B vits on top of that?
  16. Sallysblooms

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

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    No, I don't take all 8 tabs of the Preventive X because of the B6 in it. B6 is also in Adrecor. I am sensitive to B6. My Adrecor from Neuroscience has B12, and other things also. I take one or two caps a day.

    I take sublingual Methyl B12 every few days. My level is good now.

    There is Biotin in my ALA.

    I take Life Extension Mega Benfotiamine, 250mg.

    I take two kinds of ALA. Lipoic Acid Supreme (300mg) and/or the extended release ALAmax CR 600mg. Both contain Biotin. I take the ALAmax in the morning and sometimes take the Supreme in the afternoon. I get energy from too much so I don't do it every day. It can give me energy at night if I add to the 600mg every day so I don't do it often. My doctor would like me to take more, but I can't every day. I need it for the healing of my nerves for my POTS(Autonomic Neuropathy)

    I have had another big improvement. Even though it is very HOT now, (heat is a HUGE trigger for POTS,) I have been walking from the car to our church building and into stores!!! For years, hubby had to take me to church and all errands in my w.chair. The CFS is great now, but the POTS that started 3 years ago was my problem. It is now getting better and better. I was in a wheelchair for a long time, but slowly needed it less and less. For huge stores I still use my scooter. Overdoing it is never a good idea for me.

    Supplements have been what my body needed to heal. Also the diet. Very little sugar and only good carbs now. Walhs diet.... Sea veggies, KALE, etc. That helps my nerves heal also.
    GhostGum and adreno like this.
  17. Sallysblooms

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

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    I just my thread again. I never eat sugar now. I did at first, but not now. No bad carbs. I wanted to update it. That is the other half of my improving, diet.
  18. xks201

    xks201 Senior Member

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    Try MLM pregnenolone, everyone I know says that regular pregnenolone has no effect compared to that.
  19. Sallysblooms

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

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    I just follow my doctors suggestions on all brands and amounts. It is all working really well. Thank you though!
  20. CJB

    CJB Senior Member

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    Big congratulations on your return to health. Seems like getting a good doc is the beginning of the story for all who make dramatic improvements.

    I'm curious about your CFS onset, whether it was sudden or gradual and whether you had viral involvement; ie, Epstein Barr, HV6a, etc. How long have you been ill?

    Great news. Especially great that you are tolerating the heat. That's awesome.

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