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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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Search results

  1. T

    LDN, is it ok to forget once in a while?

    I forgot my ldn the other night, and it's the 5th or so time I've done so in the last few months. Is there a risk of it stopping working if I do that?
  2. T

    Way to Pay for Treatment

    My parents help me with healthcare, but I wish I could help more. I remember @Dainty saying she knew an instant message company that paid you to try out their service. Is that still happening?
  3. T

    Sinus Problems- should I take antibiotics/antihistamines?

    Hi, another question for you all. I just found out that, like I knew already, I've had chronic sinus infections for probably most of my life. Growing up, we thought I just had allergies but since I had them year round I figured it was an infection which was confirmed at an ENT appointment. So...
  4. T

    What is the first line immune system testing?

    I'll try to figure that out and post it. I don't usually scan stuff.
  5. T

    What is the first line immune system testing?

    Ok. I received the test forms in the mail. It's the larger test, I believe. So as far as I understand it, it will tell me whether I have something bad going on with my immune system, but isn't exactly diagnositic. That's good enough for me since I'm mostly looking for confirmation that I have an...
  6. T

    What is the first line immune system testing?

    Thanks! Are those 3 separate tests?
  7. T

    What is the first line immune system testing?

    I've been trying to get actual data for a diagnosis of CFS, and I'm also just curious and a little worried about how my immune system's doing. I recently got testing done to rule out autoimmune disease. I have hashimoto's and grave's antibodies, but my doctor didn't believe those meant anything...
  8. T

    Comment by 'Tabitha' in 'My ME, Part V - What I Take Now, How it Helps, and General ME Advice'

    This is a lot of good information! Thanks for sharing. What does black cohosh help you with, exactly? I have symptoms of dopamine dysregulation, and at points of desperation have considered antipsychotics, but since I'm not schizophrenic/psychotic and it'll probably just make CFS worse...I'm...
    • Tabitha
    • Blog entry comment
  9. T

    Treat the root cause

    Yeah like Jaime said, I would like a diagnosis and have worried that medications I could start taking now like LDN might obscure test results in the future. But that really comes from me wanting to get validation, and the more I think about it the more silly it is. Does LDN help with...
  10. T

    Treat the root cause

    Thanks everyone. I have been procrastinating on treatment, partly because of not wanting to obscure my illness and partly because of what friends and relatives would say about borrowing money from my parents. Stupid reasons, I know, but that's what my cognitively dysfunctional head comes up...
  11. T

    Treat the root cause

    If we knew what was wrong with our bodies, and we were able to treat the first main thing that went wrong, would most other things improve? Like I suspect a big cause of my illness is due to vagus nerve infection/poor vagal tone, so if I were able to treat that, I'd hope other things would get...
  12. T

    Metabolic features of the cell danger response

    Someone should buy some and experiment with it. It's been used on rats. @wastwater Interesting.
  13. T

    Metabolic features of the cell danger response

    So you're saying the cell danger response causes our body to not notice and kill off cancer cells, or are you saying it wouldn't signal it to us (if you're starting to get cancer)? Sorry, my brain fog's really bad.
  14. T

    Metabolic features of the cell danger response

    Good question. That makes me wonder if shutting off the cell danger response could have negative effects for some of us.
  15. T

    Treat MS with vitamin A - 2016 PubMed research 2 new studies

    Where is there info about the A/D ratio? I have that genetic variant with vitamin A. I've been working on raising my D levels, as well as my A, so that would be great to know!
  16. T

    With these symptoms, do you have any doctor or treatment ideas for me?

    @panckage Where do you get your ldn? I've considered ordering it from online, as I've heard there are safe sources, and I'm currently inbetween doctors. I convinced my old psychiatrist to prescribe it for me, but he just gave me naltrexone with no instructions at all- left me to figure it out by...
  17. T

    With these symptoms, do you have any doctor or treatment ideas for me?

    @Hip Is NAG at all like NAC when it comes to blocking methylation? I've been tinkering with methylation for a while (but I am stopping for now and putting other things in place first), but just wanted to know if you knew about this. Also, how many enteroviruses do they know about? Do you have...
  18. T

    Active B12 Protocol Basics

    Random question: I've been sometimes taking one of Hip's anxiety supplements called NAG (n-acetyl-glucosamine). Does anyone know if this would interfere with methylation like NAC does? Thanks guys.
  19. T

    Active B12 Protocol Basics

    If it's fat soluble, do you have to take the vitamin with some fatty food? Might be a dumb question, but in the past I've just taken a bunch of vitamins without worrying how they'd be absorbed... I was taking benfotiamine for a while. So what I'm gathering from reading these posts is that the...
  20. T

    With these symptoms, do you have any doctor or treatment ideas for me?

    @TigerLilea I have heard of that diet, and a long time ago considered doing it briefly but shied away because it was so different to how I was used to eating. But I've been re-considering my diet which although it's paleo I don't execute it well or eat enough veggies, so maybe Wahls is the diet...
  21. T

    H2S Test or Th1/Th2- confused!

    So, I am thinking of going to see Dr. DeMeirleir, actually I have an appointment made already but am not sure. I want to make sure that he'll be able to help me so I want to take his test, but when I went on proteabiopharma (which is where I read somewhere else that the test would be) they only...
  22. T

    With these symptoms, do you have any doctor or treatment ideas for me?

    Thanks. I really need to get my anxiety under control, and therapy doesn't help. It's been really bad for ten years now. It doesn't help with people taking me seriously, either, because the anxiety is noticeable. I looked through your post and there were a lot listed there, if you could...
  23. T

    With these symptoms, do you have any doctor or treatment ideas for me?

    @panckage, "worse in high school and beyond" means got a little or somewhat worse halfway through highschool and into my early 20s. Thanks Hip! I have tried the anxiety supplements you speak of and they do help a little, more than other things I've tried, as long as I take them early enough in...
  24. T

    With these symptoms, do you have any doctor or treatment ideas for me?

    Presenting Symptoms (in order of severity): Loss of memory and concentration (worse in high school and beyond) Fatigue (worse in high school and beyond) Loss of ability to become sexually aroused (no feeling with direct clitoral stimulation) (worse in high school and beyond), female...
  25. T

    Progressive M.E.

    I'm not really sure at this point what testing. It kind of all depends if I can get my doctor to take me seriously, which will probably be difficult because of the psychiatric drugs I've tried in the past and are in my records. I have to do more research, and chart my symptoms more. I'm going to...
  26. T

    Progressive M.E.

    How long did it take to feel better? I'm wondering because I'm looking into immunomodulation (if testing shows that's what I need). Did you feel worse before you got better? I also feel like my version of ME/CFS is progressive
  27. T

    Why I wonder if I have MCS or Histamine Intolerance

    I do avoid more than just gluten and dairy...also all the autoimmune paleo foods you should avoid, except for almonds/almond milk sometimes. I've only been really strict about all the other things (except for gluten and dairy- been doing that for months) for a couple weeks, so it's still early...
  28. T

    Why I wonder if I have MCS or Histamine Intolerance

    Ok...so I've had poor cognition for as long as I can remember. I was very brain fogged and just generally "didin't get it" as well as had some fatigue as a child and I still am, although I can pass as normal for short periods. I feel kind of autistic, but it's more than that...and it all got...
  29. T

    Amisulpride — A Multipurpose Drug for ME/CFS

    My worst anxiety symptom is irritability. I'm not sure if that's actually anxiety, but it's a frustrating symptom nevertheless. And regular anxiety drugs, like the ssris, don't seem to improve it that much. And abilify at 2 mg is helping, but a lot of it is being cancelled out by the...
  30. T

    Amisulpride — A Multipurpose Drug for ME/CFS

    Any opinions whether amisulpride or ability works better for anxiety (accompanies other chronic fatigue symptoms) I am using Abilify but wonder if amisulpride would work better. Which online site did you purchase amisulpride from?