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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Nico

    Has anything helped your "brain fog"?

    No, I'm too brain drained these days to think about that one! I'm trying to add rosemary powder to foods, to see if that can help a bit. 🤷🏻‍♀️
  2. Nico

    Dysautonomia Specialist--Northeast US?

    I'm probably going to try Dr. Blitsheyn. Waiting for a reply from an email to make an appt.
  3. Nico

    Dysautonomia Specialist--Northeast US?

    Jyoti, have you consulted with Dr. Blitsheyn? I am somewhat ready to make an appointment with her. Someone in 1 of my mecfs groups said she really helped them. But, I don't know any other pwme who have consulted w/her. OI has worsened since the C19 vaxxes, unfortunately. Just wondering if...
  4. Nico

    Has anything helped your "brain fog"?

    Came across this post this evening. https://pubmed.ncbi.nlm.nih.gov/36080178/ Silk FEH were shown to decrease the levels of the pro-oxidant and pro-inflammatory mediators interlukin-1 (IL-1β), IL-6 and tumor necrosis factor-alpha (TNF-α), protecting the cholinergic system from oxidative...
  5. Nico

    Has anything helped your "brain fog"?

    .075 mg I'd like to stay on this thread to stay on topic for brain fog. The LDA facebook groups have a lot of different patient experiences.
  6. Nico

    Has anything helped your "brain fog"?

    Are you part of the Low Dose Abilify facebook group? I found it helpful, just in case of interest. I'm 20-30 on Dr. Bell's severity scale. The LDA helped me function more consistently at 30 to, let's say 33 - which was significant. The sudden leg weakness (after 6 months), I'd say, was just...
  7. Nico

    Has anything helped your "brain fog"?

    About a 1 1/2 years ago I tried low-dose Abilify. By far, that helped cognition the most in a sustained way. Until it stopped working at about 6 1/2 months (like for most pwME who've try it). When it started not working any more, the "coming down" was really awful (just to forewarn). All of...
  8. Nico

    Hormones, HRT and Estriol

    I found this discussion because I'm struggling with certain aspects of early menopause. (I'm 54, last period was around March maybe). Big things like low mood and concentration, increased heart activity. Do get hot flashes, but they aren't too bad atm. I've also developed a new thing: very...
  9. Nico

    Request for Inosine startup effects experiences

    Bad PEM today. Wasn't able to fall asleep til after 2, really resteless and alert like you'd mentioned. I'm not sure I want to mess around with inosine again. I didn't take any today - my legs are pretty shot from the big amp up yesterday. Hard for me to read stuff like Sue Jackson doing so...
  10. Nico

    Warning about inosine plus dmae

    Do you think inosine causes that neutoxicity "seizure-like" state? Or could it be something else? I took 125 mg yesterday to try it and am still affected today (hard to fall asleep, only 6 hrs sleep). I'm not sure I'll take it today.
  11. Nico

    Request for Inosine startup effects experiences

    I just started it today, and have been wired tired and wired tired today. Restlessness. I took 1/4 of the tablet, not 1/2. (so, I took 125 mg) I think if I took 1/2 it would be too intense. I did "a lot" of chores today, and my legs are killing me. I hope there isn't mean long term payback...
  12. Nico

    Connectivity within the brainstem is impaired in chronic fatigue syndrome

    I don't know if this is somehow related, or if even relevant to what was posted 6/13/19 (Conference). I'm waaay too tired to read this, and even too tired to make a lot of sense of the conclusion. https://www.sciencedirect.com/science/article/pii/S2213158218302237
  13. Nico

    Alternative Non-Surgical Possibilities for Addressing CCI/AAI or Other Serious Neck Issues

    I wonder how this could work with someone like me.... I have EMF hypersensitivity. What about white laser?
  14. Nico

    Comment by 'Nico' in 'A very very unusual probiotic mixture that is just coming on to the market'

    I just learned about Chaga mushroom today. Hope this works out well for you, @Lassesen
  15. Nico

    Does Anyone Use a Different Antiviral Instead of the Expensive Famvir? Pridgen Protocol

    I just started a couple of days ago. I'm taking acyclovir and meloxicam (also Zantac). This is permitted as part of the protocol. Mine are all generic.
  16. Nico

    In Memory of Purple (Klara)

    This news makes me so very sad. I have not been overly active on social media, and rarely come to PR in the past few months, so I'm just seeing this today. I have such fond memories of my exchanges with Klara. I knew her primarily as Purple. I first met her on the chats when I first arrived...
  17. Nico

    Rituximab Phase III - Negative result

    Ok, I didn't know that. I just remembered this interview.
  18. Nico

    Rituximab Phase III - Negative result

    That was a German soccer player. There was an interview with them, and Miktovits. When they talked she said that with the dosage they gave him that it was no wonder that he became more ill. It's in here somewhere. The intro starts out in German, but the rest is in English.
  19. Nico

    How we can hijack the media, in four easy lessons

    Really great Sasha! Thanks for this.
  20. Nico

    A Little Poisoning Along the Road to ME/CFS

    Yes. Thanks Jody, for the reply. :)
  21. Nico

    A Little Poisoning Along the Road to ME/CFS

    I went from mild to moderate me/cfs (I didn't know I was sick, actually) to severe after an acute and week -long insecticide poisoning. Having MCS, I know when things are not "pure". I have more pain these days, which may be because I'm sleeping on the sofa for the past month. It's not...
  22. Nico

    Can You Come for a Visit? My ME/CFS Says No

    This is a heartbreaking illness. I was lucky enough to see my family for a Thanksgiving 2 years ago. It was a very happy day for me, and I hope to relive the experience. That was, however, the first time in years I was able to attend. And, what the future holds is always uncertain. Missing...
  23. Nico

    ME/CFS and the Magic of the Canine Factor

    Thank you, Jody. My last kitty did have some special needs, and I had to keep a close eye on him for a variety of reasons. He needed medication for asthma, which was easy enough to administer. But, because of his needs, and my personal understanding of them & their nuances, he was not able...
  24. Nico

    ME/CFS and the Magic of the Canine Factor

    Jody, it's a lovely story, and of course there are challenges. It's very hard for me to imagine having a dog because the ME I have is severe, also live in an apt. by myself. I'm not sure what I'd do when it's bath time for the dog (even a small one). I've never owned a dog, but I think a dog...
  25. Nico

    Patient Experience: "What Bronllys taught me about pacing."

    I guess when I read the article, I wasn't paying attention to the "between the lines" info. I have to agree, I could not do a regimented schedule like that. Didn't even think about MCS/EMF stuff. I suppose when I read Maya's write up, I got the impression that she gained something from it...
  26. Nico

    Patient Experience: "What Bronllys taught me about pacing."

    I'm so glad to read that this 'clinical' experience was helpful to Maya, without any negative repercussions. For myself, I do need to think about pacing a bit more, so helpful. Thank you.
  27. Nico

    Science to Patients: Talking ME, Exercise and the Mitochondria - with Dr Charles Shepherd

    Dear Dr. Shepard, My physiology changed after the Hep B vaccine in 1999. I got very sick after each shot. When the series was done, the first symptoms of physiologic change was "leaden legs" when exercising. Exercise tolerance diminished remarkably (I was very athletic). I had an MMR a few...
  28. Nico

    Finding a crowdfunding platform

    Hi Guys, I can only quickly skim what is going on here right now. Hopefully when heating season is less intense, I can contribute more, more meaningfully. So, here are some thoughts (which I'm copying and pasting from my email). A University is sort of like its own "country". It has...