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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. SuzieSam

    Orthostatic Intolerance (OI) Basics: Dysautonomia of Blood Vessels, Low Blood Volume, and Baroreflexes

    I'm new here, hello. This was very helpful, thank you @Pyrrhus. You've made a complicated subject very clear. I hadn't absorbed what Orthostatic Hypotension actually was from all the stuff I'd read before. Do you know what they should be using to measure it, when you go for a Tilt Table...
  2. SuzieSam

    Glutathione IV and Nebulized Therapy

    Hmm, great food for thought, @Learner1. I'm going home to the UK in a month's time, for a 2 week visit. Once I'm over the travel, I should definitely do that! So much better than shooting in the dark. Thanks for the guidance. :)
  3. SuzieSam

    Glutathione IV and Nebulized Therapy

    @Learner1 I only WISH I could find a competent doctor round here who could guide me through this! I finally found someone half competent for my "alternative" bio identical hormone treatment, and him I'm not so happy with. And that's so easy to handle! THIS stuff is way beyond anyone here or even...
  4. SuzieSam

    glutathione--your favorite kind/brand?

    Just wondering - I was gonna just try taking NAC and let my body convert it to Glutathione... do you guys think that's a dumb idea? I'm too brain dead at this point to evaluate it. :( Thanks for any clues, Suzie
  5. SuzieSam

    Glutathione IV and Nebulized Therapy

    @Groggy Doggy thanks for the links - it says on one that Prof Shungu used 1800g of NAC in his small trial. Is that what you take? I read somewhere that taking NAC is better than glutathione because it's much less likely to get destroyed in the gut. Dunno if that's right. I guess that's why...
  6. SuzieSam

    Elimination Diet...for my chronic fatigue

    Wow, you'll know within 3 weeks? Definitely doable! Your hypothyroidism might be undertreated. How are your Free T3 and Free T4 levels? Mine are terrible, barely getting into "normal" but since my TSH was always low, my mainstream doctors insisted I was taking enough thyroxine. Big mistake...
  7. SuzieSam

    Is this normal for CFS?

    Exactly! I totally exhausted myself cooking a lovely meal for my family on Thursday night. I knew I'd be wiped for a couple of days, but that's the devil's bargain I chose to make. My kids and husband felt cared for and got some nourishing food. I got satisfaction of a job well done and pride...
  8. SuzieSam

    Hashi's and bi-polar cortisol, is it possible?

    @Paralee great to hear your brain is clearing up some. I'm with you on the less going back and forth. It's so damn complicated. Trying to think if I read it anywhere simpler, but so much bio-chemistry jargon is thrown around. Wish I could explain it to you, it's bogged down somewhere in the...
  9. SuzieSam

    Hashi's and bi-polar cortisol, is it possible?

    Hey, me too! I've read everything, understood it, and forgotten it. I used to be very smart too. Yep, totally confused, stupid, and in bed alot. Dunno if it's really ME or the thyroid/adrenals/hormones... Stop the thyroid madness. That's a great site that explains it. They explain on that site...
  10. SuzieSam

    Gene editing cures sickle-cell case

    I just read about this. Fantastic.
  11. SuzieSam

    Is this normal for CFS?

    Yes, me too! It's horrible. Just lifting a heavy pan up can do this to me. You described it perfectly. Just yesterday, I had the energy to cook something, but the thought of getting the pan out the oven made me wince at how it would feel not just in my body, but in my head.
  12. SuzieSam

    Elimination Diet...for my chronic fatigue

    I really empathise with you. To have beaten one horrendous health problem, only to be saddled with another... Too cruel. Me too. I also did the can't-sleep-sleep-study and was told that the scant hour and a half of sleep I got showed them a healthy sleep cycle. But like you, I wake several...
  13. SuzieSam

    Elimination Diet...for my chronic fatigue

    I think that it's imperative that your sleep is looked at. You said you haven't got in to a Sleep Doctor yet, so I guess you haven't been to a sleep lab yet? It could be that you have sleep apnea, or that you aren't getting restorative sleep. We recently discovered from a sleep study that...
  14. SuzieSam

    OAT - Organic Acid Testing - is it useful?

    @arewenearlythereyet @bertiedog @alicec Hell, now I'm confused again! And too exhausted to sort it all out. The damn curse of it all. :( I'll be back. ;)
  15. SuzieSam

    OAT - Organic Acid Testing - is it useful?

    @Hip Actually the selenium is vital for thyroid function, and supplementing the deficiency been shown effective in reversing subclinical hypothyroidism! Symptoms include fatigue and brain fog. That's brilliant, Hip!
  16. SuzieSam

    Vitamin C for sleep (seriously!) - ameliorates excitotoxicity

    Wow, fantastic information all round. I'm definitely going to get my daughter to try to ease off on her 6mg melatonin - sublingual! She just can't fall asleep without the punch of it to knock her out. The extra supplementation in it's place makes excellent sense. We both utilise f.lux and...
  17. SuzieSam

    Vitamin C for sleep (seriously!) - ameliorates excitotoxicity

    Thanks @Mary! I'll read that again tomorrow after a cup of tea and make notes. Lots to work on :) :thumbsup: Very helpful about the cortisol - I'm sure my daughter (17) has a spike of evening cortisol running her brain ragged when she's exhausted. Bonkers at night for a years, after being a...
  18. SuzieSam

    Vitamin C for sleep (seriously!) - ameliorates excitotoxicity

    Very interesting! My husband had a sleep study done recently which showed he's basically half awake all night as his brain is too active. He doesn't dip down into the lower levels of sleep enough to get refreshed. The sleep doc recommended something called CBTI which sounds unsuitable for his...
  19. SuzieSam

    Article: A psychosomatic diagnosis is a doctor’s way of saying, “I don’t have a clue”

    I wonder how many of us have actually seen psychiatrists, and been told such nonsense? It seems to be doctors in entirely unrelated disciplines, Weasley notwithstanding, who trot out this insulting line. I hate it, I hate it, I hate it! Best psychosomatic line I heard, when my daughter was in...
  20. SuzieSam

    Who are the 10% that get better

    Don't give up hope @nikefourstar. Please investigate other things it could be, like Lyme etc, and also low B12, folic acid and anemia, if your doctor hasn't already. So often doctors label people with ME just because they lack the time or skill to investigate properly. It's disgraceful. It's...
  21. SuzieSam

    OAT - Organic Acid Testing - is it useful?

    This is is precisely what I'm concerned about! Thank you @mrquasar. Although, then I read testimonials is like yours @Silence, and I wonder... Do you know what lab your MD sent your test to, @Silence? I'm curious to know if s/he used one of these non-regulated labs or a hospital lab like the...
  22. SuzieSam

    OAT - Organic Acid Testing - is it useful?

    I have to respectfully disagree with you @Jonathan Edwards about the judicious use of supplements. People who have certain mainstream, medically identified mitochondrial disorders take Coenzyme Q10 and other supplements to boost their Krebs Cycle function. This doesn't invalidate their...
  23. SuzieSam

    OAT - Organic Acid Testing - is it useful?

    Thank you so much everybody. I was hoping you'd give an opinion, Prof @Jonathan Edwards. I'm particularly interested in this kind of test for my 17 year old daughter who is struggling this year after a fairly good time last year. Academically, it's a lighter year, and September went well - up...
  24. SuzieSam

    OAT - Organic Acid Testing - is it useful?

    I'd be very interested in having OAT testing done if I really felt it was genuine. The problem is that there's a lot of scientific jargon thrown around and it feels quite like the 23andMe bandwagon that everyone jumped on a few years ago. But quite a bit turned out to be hogwash. This is from...
  25. SuzieSam

    So Disappointed PEM appears 6 hours after a Very Good Day

    I really feel for you Pam. I'm so sorry this has happened, and I hope you recover the lost ground quickly now that you're back on the extra thyroxine. Bloody know-it-all doctors! I will never bow before them again! Keep well, take it easy, be kind to yourself. :heart:
  26. SuzieSam

    strange thyroid stuff

    You're right about your T3 - I saw 165 instead of 105! Shows what a bad state I'M in :ill:. Yeah, it's meant to be in the top quartile, isn't it, so yours could do with getting a bit higher. You'd better do the sums... I'm clearly having a slight problem with numbers. :thumbdown: I've also...
  27. SuzieSam

    strange thyroid stuff

    I've just started out on the Natural Dessicated Thyroid Hormone journey and its a whole new world. Your Free T3 level is amazing. Please God by me. :thumbsup: How long have you been on the T4 for? Maybe come off it and see if the diarrhoea stops? If not, it could be something else. Food...
  28. SuzieSam

    So Disappointed PEM appears 6 hours after a Very Good Day

    Thank you, that's so reassuring. I went and looked it up to confirm, and of course you're absolutely right. It's pointless going to my GP because she'll just have a massive go at me about what I'm taking. Surely I can't be hypER with a seriously low T4, and a still barely normal T3 just...
  29. SuzieSam

    So Disappointed PEM appears 6 hours after a Very Good Day

    Hi Pam, I agree. The holistic doctor I'm seeing told me that when he did his psychiatry rotation in the early '80s, if the anti depressants didn't work they tried B12 shots and T3! What happened to that? Big Pharma. And it worked a lot of the time. Appalling that money and corruption won out...
  30. SuzieSam

    Vertigo after b12 shot?

    So glad for you, @JaimeS :thumbsup: For some reason, the name of your B12 supplement made me think of happy penguins! Ah, like in the movie "Happy Feet" :lol: