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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. R

    SCENAR treatments for neuro, fibro,....

    invisiblejungle Thank you for the information. Unfortunately my mind cannot do research like I once could so I don't have a lot of research to offer. Though my doc said to help the ANS also put it at the middle point of the wrist just past the hand, on both front and back. (Dose it) She...
  2. R

    SCENAR treatments for neuro, fibro,....

    The Scenar model I purchased is the home version. Not the pricey professional model. I use it daily and it is still helping my ANS. I have my spouse use the 'brushing technique' on my shoulders and neck. Just change the setting from F, FM, AM, D, rotating them each time you use the device...
  3. R

    NT Factor

    I, too, first worked on boosting the immune system/gut and continue to do so. It is never ending, though, with new discoveries of bacteria etc. to add to the mix.. It is like juggling several balls and someone keeps throwing a new one in just when you were finally able to keep the ones you...
  4. R

    NT Factor

    @ Creekee I see a holistic MD. Along with the Protomyxzoa Rheumatica, they probably ran a test for biofilm on you. You can't get rid of the PR until the biofilm is eliminated. Biofilm feeds off lipids and magnesium, calcium, and iron. I was put on a 15-20 grams of fat/day restriction diet. I did...
  5. R

    NT Factor

    I will PM you, Flurrywinde.
  6. R

    NT Factor

    After taking NT Factor with good results, I was able to move on to ATP which does more to repair the mitochondria cells than just NT Factor. It does include NT Factor and unfortunately is even more expensive than NT Factor. But it really has helped. I took the full dose of ATP (all Researched...
  7. R

    NT Factor

    It has been ages since I've been on PR but I wanted to update my experience with NT Factor. Yes, Maryb, the one I take only sells to doctors (Researched Nutritionals). I obtain mine from my doctor. I underwent a long term mildly approached antibiotic treatment for nearly one year (after...
  8. R

    SCENAR treatments for neuro, fibro,....

    I got my scenar just two days ago. It is a little confusing since my cognition is not the best at present. I have been using it to help the migraines, neck pain, and to get better sleep. It does calm the body, as you experienced, Nielk. It is great for anyone with anxiety or the...
  9. R

    SCENAR treatments for neuro, fibro,....

    Hi Nielk! I was skeptical when I first tried scenar. My doctor used the method which you described at first and I saw a benefit but I didn't notice it right away, more like the next day. It wasn't a "wow" response either but I hadn't expected any so I was somewhat pleased. She has since...
  10. R

    SCENAR treatments for neuro, fibro,....

    Great to hear about all of the benefits of scenar! Hello Susan! I also tried the blanket for about 2-3 weeks. I didn't notice a big difference really but I agree with you that it would take a while. I just wrapped up in it and felt like a giant taco! My doctor was kind enough to...
  11. R

    SCENAR treatments for neuro, fibro,....

    Susan, I just purchased a home device because I have been so impressed with it. I will be picking it up from my doctors in a couple of weeks. The in-office treatments have helped with fibro pain, migraines, sleep, and calming the dysregulated autonomic nervous system. You need someone to...
  12. R

    NT Factor

    OK, it has now been about 10 weeks on NT Factor and I am amazed at the difference!!! PEM is significantly better....recovery time is much quicker. Mental and physical energy have both improved as well as mental clarity, memory and comprehension. I am taking other things too but I do attribute...
  13. R

    NT Factor

    I am also taking Researched Nutritionals NT Factor. I was unaware that one could obtain it without a doctor dispensing it, even though it is a supplement. My doctor said it takes about 12 weeks before you see results but I am noticing a slight increase in mental energy at 7 weeks. I am...
  14. R

    Anyone Tried NADH for Energy?

    Duh...never mind...lol!
  15. R

    Is it our heart/ virus???

    I agree with that Cloud. My doctor has dx dysautonomia which is handled by cardiovascular docs or neurologists and some knowledgeable GPs. The initiating trigger, in my case a virus, set off an autoimmune response attacking my brain (leaving lesions). It mostly attacked the brain stem which...
  16. R

    Anyone Tried NADH for Energy?

    I'm sorry you lost me on that. What were you told to take 10mgs of 2x/day, Marg?
  17. R

    Anyone Tried NADH for Energy?

    I had heard about Cheney's theory too. I initially gave it more consideration but have since changed my mind since I have made gains with sea salt which provides me with more energy. I am doing better overall. Also if I breathe deeply while doing very basic, lying-down-only exercises (since I...
  18. R

    Is it our heart/ virus???

    Yes, that was the wrong choice of word. I should have said nervous system rather than brain. Sorry, fog does that to a person! Yes the enteric system is involved with digestion and is a lesser known part of the autonomic system which adds to the intestinal issues and then there are the immune...
  19. R

    Anyone Tried NADH for Energy?

    I agree. None of the supplements are meant to cure you but instead to support the body so it can have the best odds of healing itself. This is what happened to me before. I got significantly better but (not being prperly dx at the time) I over did things significantly and I crashed long and...
  20. R

    SCENAR treatments for neuro, fibro,....

    I had my second treatment and it was great. It stopped my migraines and has helped calm my system. I can't afford the $5000.00 price tag for one and you need someone to do it to you which makes it tough for many. But there is a blanket that Scenar puts out which blocks EMFs and helps your...
  21. R

    SCENAR treatments for neuro, fibro,....

    I just read a very informative thread on Bemer 3000 and wondered how it compares to the SCENAR that I am trying. I skeptically tried this treatment, with no ill effects, and didn't notice anything after I had it done. But I slept really well that night and the next day I had significantly...
  22. R

    Non-Standard Anti-Anxiety Treatment

    Thanks for this post Hip! I appreciate when people share what has helped them so others can benefit!
  23. R

    Is it our heart/ virus???

    I believe the heart is involved because the brain is involved! I realize everyone has a different perspective on this but this is how my doctor has explained this to me. The autonomic nervous system is haywire with this illness. It controls your heart rate, blood pressure, circulation...
  24. R

    IC Irony in POTS IV Treatments

    Lesley, They say it takes about 4 hours a bag (unless you have a port line in) but if you use all of the liquid in the bag it is closer to 5 hrs. The way I see it, if I am going to go through the process I want every drop out of the bag. It is impractical for daily, even weekly use if you...
  25. R

    YUMMY healthful snack!!!!

    Sallysbooms, You are fortunate to have helpful doctors who understand this illness and know how to treat it with good brand supplements. I have had to do a lot of the research myself or have taken pointers from knowledgeable people like yourself. Although my doctor is good and uses some...
  26. R

    IC Irony in POTS IV Treatments

    After many years of debating and trying to figure out the logistics, I have finally tried IV saline solution. Dr. David Bell is a big advocate of such treatment as are some others. I have POTS as well as this misnomer illness we share. I only did two days as a trial. The first day I noticed...
  27. R

    Article: Dr. Peterson and ME/CFS Patients Meet with NIH Officials Prior to XMRV Works

    I am so grateful to all of the individuals who are still fighting hard after many years of neglect, to put it politely. The hope that fuels their fire is so inspiring. Thank you for sharing this article and for your contributions to the meeting as well as your advocacy role in this war.
  28. R

    YUMMY healthful snack!!!!

    Sallysblooms, I am so sorry. I thought I had subscribed to this thread but apparently I didn't remember to. I was wondering what your results were all of this time and thought it odd that you hadn't replied (which is so unlike you) so I tried to find the thread but couldn't remember what it...
  29. R

    YUMMY healthful snack!!!!

    Hey Sallysbloom! It's been a while. I hope you are doing well in this crazy-hot weather! Do you find that the gluten-free diet helps the POTS? Or is it too soon to tell? I think I will be trying intravenous saline, but was curious as to what else helps. I am also on florinef and...
  30. R

    Anxiety in ME-patients (BECAUSE of the ME, not the other way around.)

    I think that the anxious feelings are totally controlled by this disease. For no reason I'll feel anxious or like I want to just sit and cry and then ten minutes later, it's like it never happened... What I find that makes this worse is anything that is supposed to help fatigue, like CoQ10...