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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. stefny

    Excellent Earthing/Grounding Documentary

    Thx, I saw the grounding video as well and thinking about getting something. Anybody have any experience with what kind is best or where to find this info.?
  2. stefny

    Researched Nutritionals - ATP Fuel or NT Factor Energy

    Yeah, I should check that. Not regular with it. Too much stuff. Is it helping you with the 3 scoops? I got 2 cold sores in 2 weeks despite taking 3 scoops most days. And didn't notice feeling better. But maybe I took too much too fast as you say. I don't usually get two cold sores all year...
  3. stefny

    Researched Nutritionals - ATP Fuel or NT Factor Energy

    Yeah, I agree/good point. Maybe I'll take a break after this bottle and see if I feel worse. You said it..."the constant fight and being caught up in it tirelessly..." :ill:
  4. stefny

    Researched Nutritionals - ATP Fuel or NT Factor Energy

    Thx Ghost Gum. Funny you should mention that. I was actually wondering if I have plateaued mysel and maybe I am somewhat better. I guess I'm still sorta miserable so it's just hard to tell. I'm having a better day today but then I spent 2 hrs. in HBOT and had hydrogen peroxide i.v...
  5. stefny

    Researched Nutritionals - ATP Fuel or NT Factor Energy

    Good article, thanks GhostGum. I was trying to find the first part where it says to also take some other supplements on the first table that will also help but couldn't locate it. Anyway, I've been doing the D-ribose/Creatine and NTP Factor for maybe a month now. At first I thought it was...
  6. stefny

    Researched Nutritionals - ATP Fuel or NT Factor Energy

    Thanks for confirming this Roberto7. I think I started on the NTFactor about a week ago, not quite even and I'm already noticing the difference. Like you say - symptoms are less severe. It's so good to know someone out there has had a good reaction to it as well. I have a serious problem...
  7. stefny

    Researched Nutritionals - ATP Fuel or NT Factor Energy

    10-4, thx.
  8. stefny

    Researched Nutritionals - ATP Fuel or NT Factor Energy

    Thx Jerry, I guess I should have explained better. My doc has been telling me to take it. But he is in another state and we mostly do phone consults. when I'm feeling too bad to drive out there, like now. I had the phone consult and he said to get some (again) then I found out when I tried to...
  9. stefny

    Researched Nutritionals - ATP Fuel or NT Factor Energy

    Oy. So I wonder why they do these tests if they're useless? I'm not taking anything for depression or pain so am o.k. on the seratonin sickness thing but the test is so expensive that the co. won't even tell me how much on the phone. I have to actually go to my doc. and pick up the kits and...
  10. stefny

    Researched Nutritionals - ATP Fuel or NT Factor Energy

    Thanks GhostGum, The article on stacking talks about needing 4 days for the body to rebuild the ATP on it's own. That sounds like the Post Exertional Malaise part, yes? A big problem for me. I'll try it. Is this making a noticeable difference for you?
  11. stefny

    Researched Nutritionals - ATP Fuel or NT Factor Energy

    Really? I'm supposed to have some expensive/not-covered-by-insurance neurotransmitter testing. I believe it's a saliva test. Is there an accurate way to measure these?
  12. stefny

    OI very connected to fatigue - why?

    Thanks thanks thanks Erist. Did you say you are NOT taking the florinef? Sorry, my brain fog is so bad I get so confused reading all of these things. Just the thermotabs work? Cuz I'd like to quit the florinef as I don't think it's helping/may be making things worse. Wasn't finding a lot of...
  13. stefny

    OI very connected to fatigue - why?

    Don't do sugar either, but tons of stevia. Thx. for posting the Electro-Mix. Will look for it. I'm glad your daughter is doing better on Florinef. I'm wondering about the immune thing as I'm feeling more viral/exhausted/sick since starting the florinef tho... maybe less fainty. I'll take...
  14. stefny

    Researched Nutritionals - ATP Fuel or NT Factor Energy

    Thanks August 59! I don't know how you found these but I appreciate it. I must've spent an hr. looking before giving up. ;)
  15. stefny

    Researched Nutritionals - ATP Fuel or NT Factor Energy

    Thx GG. do you know what helped your energy improve? Sorry you have the pain - I don't have - but the energy/brain fog is my biggest problem.
  16. stefny

    OI very connected to fatigue - why?

    Thanks very much SOC. I'll run it by my doc. I had no idea.
  17. stefny

    OI very connected to fatigue - why?

    sodium AND potassium? I keep reading different things about the potassium - that it must be balanced and/or that it will make the POTS/OI worse? I'm trying florinef for the 3rd time out of desperation and it's not helping much if at all. Also worried about immune system effects. Salt & water...
  18. stefny

    OI very connected to fatigue - why?

    I'd be interested in this monitor/app as well.
  19. stefny

    Researched Nutritionals - ATP Fuel or NT Factor Energy

    Thanks GG. I have seen the CraveArrest. It must be helping for you to take so much? Does it help with energy/mood as well? I'm supposed to have neurotransmitter testing - it looks like it contains a lot of the supplements used to treat abnormal levels.
  20. stefny

    Researched Nutritionals - ATP Fuel or NT Factor Energy

    Anyone know how/where to order either of these w/out a doc. referral? I called the co. and they said it can be done thru another doctor's website if I can find one, but wouldn't say which one. :rolleyes: (What's the point of making this hard to get?) Anyone have any thoughts on either...
  21. stefny

    Florinef: your review? And, isn't it a steroid = not good for immune?

    Hmm, thanks Tania. Turns out my doc wants me to try the saline w/out the florinef first anyway. I WAS wondering about how long the saline would last. I had my first saline iv Mon. p.m. and felt better Tues. though... my pots was so bad last night (Tues. p.m.) that I had to sleep with the...
  22. stefny

    Florinef: your review? And, isn't it a steroid = not good for immune?

    Hi Lindab016, By iv fluids do you mean saline? I'm starting adding it to meyer's cocktail tomorrow just to try out. Wondering if it's a good idea or if one bag once a week will even make a difference. Adding salt to my diet does nothing and the POTS is worse in the summer.
  23. stefny

    Florinef: your review? And, isn't it a steroid = not good for immune?

    Thanks Ema. I'll see if I can get the bloodwork. I use the Himalayan right now. I've been taking it w/out the florinef per the tilt table doc but I can't tell if it's doing anything. I crave salt anyway, don't know if it's related. I've been taking potassium every day - I think 99 mg.s just...
  24. stefny

    Florinef: your review? And, isn't it a steroid = not good for immune?

    Wow. This is all really good news. I think I might try it. Do you need to take extra salt with it? How do you know how much potassium to replace/supplement? What about electrolyte supplementation? Every doc. I ask has a different answer.
  25. stefny

    Florinef: your review? And, isn't it a steroid = not good for immune?

    Thanks for posting this HTree. These are my concerns exactly. Except I'm not up on the immunomodulators and I also have lyme/systemic candida as well as high EBV/HHV-6.
  26. stefny

    Comment by 'stefny' in 'CFS implications for family, how to communicate?'

    Hi Inester7, Just read your post and I don't have an ounce of advice but wanted to say I know what you mean! You described the brain fog/reading thing really well. I don't understand it either so it's hard to explain. My sister sometimes asks me to proofread stuff... long scripts and yeah...
    • stefny
    • Blog entry comment
  27. stefny

    Does anyone know a healthy vacation spa/getaway for CFS?

    Thanks everyone for great ideas/all the great info. Looks like my plans (finances) for this summer fell through as well as I'm totally crashed out. Will look into for next year though. Hoping iv's/HBOT improve things by then. It will take me that long to look into all of these great places...
  28. stefny

    Does anyone know a healthy vacation spa/getaway for CFS?

    Wow. Thanks Hope123. Who knew? Looks great.
  29. stefny

    Poll: Has raising the head of your bed helped your OI/POTS/NHM?

    So getting up to pee a lot at night is a POTS thing?? My GP told me to check for fibroid pressing on bladder. I also can't imagine feeling better with head of bed raised as the more horizontal or inclined I am, the better I feel. I don't really understand that theory. But I'll try anything.
  30. stefny

    how much potassium and salt to take with florinef

    I have the same question. I've heard varied: one 100 mg. capsule every 2 weeks from a mainstream POTs doc., 99 mg.'s a day, and Hulda Clark used to recommend a sodium/potassium salt combination for everyone. I'm also wondering about coconut water for electrolyte balance.