• Welcome to Phoenix Rising!

    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. C

    Progesterone cream vs pills

    Hi, I never know where to list these questions. But I just realized that I haven’t felt the same (didnt just notice I don’t feel well but rather noticed the timing) since about two weeks after switching from progesterone cream to pills. My online search is revealing that pills create more side...
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    Cost effective ways to buy peptides and/or compound meds

    Hello! Does anyone have input on how to get either of these things most cost effectively? (Compounds meaning thyroid meds, hormone creams, etc.) Thanks!
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    Thymosin Alpha 1

    @debored13 @jepps I wasn’t expecting much in terms of improvement because I have tried other peptides, but this one (at this point) seems to be a game changer, and my doctor says he has seen that in patients. I was not bed or home bound. I take care of myself and work some. But I still feel...
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    Thymosin Alpha 1

    @debored13 Hi, I'm was about to post that I think Thymosin Alpha 1 has been a game changer for me in a new post. I inject it subQ. I'll just add my thoughts here since there's already a post with that title. I'll preface my thoughts by saying that I take a lot of supplements and do a lot of...
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    NAD IV Infusion therapy?

    @junkcrap50 I think we've had success building it up. We haven't done a test or anything. I don't even know if there is a test. I'm just going off response. I'm trying to recall my initial response to the IV....I seem to remember it gave me very short term normal-like energy. I was told to...
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    NAD+ IV Reaction?

    Just saw this again after being tagged in another thread. I figured out since this incident that this uncontrollable shivering was likely from a series of chiropractor appointments.
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    NAD IV Infusion therapy?

    Hi, I did 4-5 infusions and then started the nasal spray version and been on for maybe about 6 months now. I do other treatments but I’m pretty sure it has been the thing to turn me around. The highest functioning I’ve gotten in my 20 years is about 80%. Pretty sure NAD (I believe technically...
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    Should I keep follow-up appt with endo?

    From what you described, it’s a hard no for me. :)
  9. C

    Seeking LDN input

    Hello. I've been feeling indiscriminately worse at times (other times same), and I was associating it with other treatments or just a worsening of symptoms. Then I remembered that I just bumped up LDN again last week. I started end of September with a drop, then 2.25, then 3.75, then the full...
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    NAD+ IV Reaction?

    Thanks...you can have opioid withdrawal without taking opioids?
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    NAD+ IV Reaction?

    They are not that expensive for me (comparatively). Starting at $150ish depending on dose. As the dose creeps up though, they start to get expensive.
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    NAD+ IV Reaction?

    Thanks...I'm not sure what mitochondrial waste is though?
  13. C

    NAD+ IV Reaction?

    I heard back from my doctor, and he said it could have been die off. If it was a virus, it sped through my body. Doesn't seem likely. I hate these mysteries. I just wish I knew what was going on.
  14. C

    NAD+ IV Reaction?

    Thanks for your thoughts @junkcrap50. So far, I haven't had any reaction during the IV itself. They go pretty slowly though. The detox is an interesting theory. I assumed an immune response (even if it is an actual virus) due to the fever, but a large toxic release could explain it as well. I...
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    NAD+ IV Reaction?

    Hello, I had my third NAD+ infusion yesterday afternoon. There's been about 4-5 days in between each infusion. I built up: 1st IV: 200mg, 2nd: 400mg, 3rd: 600mg The first two didn't create much difference other than I seem to have more strength and energy. Like it picked me up. It didn't last...
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    Comment by 'confetti11' in 'On resting and getting past the initial fear of resting'

    Wow, this is really good Lior. I need to reread this when I can take it in because I hate resting during the day.
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    How do know if it's an ulcer?

    I'm pretty sure I had an ulcer about a year or so ago. At the very least, it was gastritis. I didn't get scoped, but one of the hallmark symptoms I believe is a gnawing burning sensation that mimics hunger. I had this. So like, you'll eat plenty of food, then like 10 mins later have an intense...
  18. C

    Is ME/CFS a Rich Man’s Disease?

    @AngelM Everything you're saying...one of the most heartbreaking things about dealing with this condition. The money, the finances, the suffering. The lost dreams, lost relationships, the isolation, lost hope. You ask for help and then people won't look you in the eye later after they say no...
  19. C

    Can someone check out these thyroid levels?

    Nevermind everyone, I talked to my doctor already. Thanks!
  20. C

    Can someone check out these thyroid levels?

    Hi, my doctor is using new online software, and there are no optimal ranges with these test results they just downloaded. I will talk to him, but I wanted to be educated first about these results. Does anyone who knows about thyroid results know if any of these levels are off? I know the TSH...
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    ME/CFS handout, and statistics?

    Thanks for your input everyone!
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    ME/CFS handout, and statistics?

    Hi, is anyone aware of a good one-page handout that explains ME/CFS? If this handout doesn't mention the statistics of how many people are guessed to be living with ME/CFS...does anyone know that latest number? Thanks!
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    Seeking Doctor In Chicago

    Not sure about Chicago, but I see Dr. Dale Guyer in Indianapolis, 2.5-3 hour drive. As far as I know, he will do phone appts from the start. I've seen him for 18 years, and he has been extremely helpful. If you're into alternative treatments, you have one of the best homeopathic doctors in your...
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    Florinef/Salt

    thanks! @Shoshana @Gingergrrl Taking for general adrenal symptoms. I couldn't say specifically which ones because it's been a while. I've always tolerated it well so far. I don't tend toward POTS symptoms. Yes, I take potassium along with a lot of other supps. Thanks!
  25. C

    Florinef/Salt

    Hi, I've had some symptoms pop up lately that are getting annoying. I take 1.5 pills of .1mg of Florinef daily but I'm thinking I may need to play with the dose (I've taken as high as 2 pills in past). I think the symptoms reflect salt balance. Dr is looking at tests and I have an appt in 2...
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    Is electro-magnetic field (EMF) hypersensitivity a real thing?

    I personally don't think there's any way for sure to know it's not harming you, especially for the sensitive. I turn my wifi off at night (trying to go back to being hardwired), turn my phone off at night and recently rejected a smart meter be put on my house. I've been told those are the three...
  27. C

    Can’t describe how I feel

    Nope and ditto. I've been at this 18 years now...had lunch with a friend yesterday (which is hard to do right now, crawling out of a relapse of sorts for a year now) and was just telling her...I wish I could describe to you how I feel right now. I felt sickish. It was hard for me to sit still...
  28. C

    Acupuncture

    I've used this many times in the past. Never saw a major result. Went to a new (recommended) doctor to try again just last week. First treatment was many needles put in pretty deep (they said) for 30 mins. The next day I felt like total crap. I'm assuming some kind of reaction or healing crisis...
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    Watching Unrest again, I'm noticing something.

    Like this...
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    Watching Unrest again, I'm noticing something.

    I think this might go along with it too...I can't stand with both legs straight...I have to cross one over the other...essentially leaning on one leg and giving the other one rest. I do this constantly when having to stand in one place. I look at people in amazement when they can stand with both...