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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. Tofer

    I experience possible cognitive improvement by lamotrigine and clomipramine

    The thing is that some of people with CFS/ME symptoms may have a typical depersonalization/derealization problem, which cause same effect as CFS. Try to search, they have their forum. DR/DP can be treated with Lamotrigine but not always. The classic DP/DR symptom is a fog and 2d reality, but...
  2. Tofer

    Seems sometimes it could be a head problem...

    No, I don't. Actually I start thinking it's much more complicated than just one cause. And depression together with panic are the main causes of her problems. But what does really cause them? We've tried already 4 types of AD and they don't work. The doctor which used to be so confident at...
  3. Tofer

    Seems sometimes it could be a head problem...

    The thing is that she had all that symptoms, but after she had "stood up" all the symptoms disappeared:/ but a strong depression arrived. Just don't know where the cause is hidden ( Now she is in a hodpital taking Fenazepam and other medicine trying to find a proper AD. She is very sleepy and...
  4. Tofer

    Seems sometimes it could be a head problem...

    My wife has been doing badly since her 16. It started with panic attacks, agoraphobia, fatigue, brain fog and headaches. Then there was a period she felt a bit better. 6 years ago I've met her and we started to try to live a normal life. Of course it was not that easy. She felt badly often. But...
  5. Tofer

    Has anyone been helped by Vagus nerve stimulation?

    Hi! I've bought the TENs thing for my wife (she is ME) and tried first it on myself with the following settings 20 HZ 100 ms and 1 second on and 1 second off for 15 min in general. Actually I didn't expect such a strong effect. I wouldn't say it was great. For the right ear I felt like something...
  6. Tofer

    Vagus Nerve Stimulation Device

    So, I can just use my myostimulator to make a vagus nerve stimulator? But which parameters should I choose for the stimulations ?
  7. Tofer

    Artesunate for HHV-6, anyone?

    It seems her profile is not available anymore.
  8. Tofer

    Artesunate - Cheney dosage and benefits

    Hello everybody! Wow! This thread was created in 2009. I found some positive posts about this medicine from 2010. Some people started to feel better, but what happened next? I assume a lot of things have changed since that time. Are there anybody with HHV6 or HHV7 in this forum, who has tried...
  9. Tofer

    How I found the underlying cause of my CFS--anti NMDA antibodies

    Shawn, please, I know it's not easy for you and you might have your problems. But can you provide contacts of the clinic in china, that can make autoimmune analysis, cause in Russia nobody makes it in a proper way.
  10. Tofer

    How I found the underlying cause of my CFS--anti NMDA antibodies

    Shawn thank you! She hasn't tried fasting, cause she is under-wieght. It's really hard for her to gain some weight, especially now. But in theory it sounds interesting. Your body just start eating what it needs the less and IS cells as well.
  11. Tofer

    How I found the underlying cause of my CFS--anti NMDA antibodies

    Shawn thank you a lot for your answer. We live in Moscow and I think we can get PP here. I will talk to my wife about it. Interesting thing that after I'd read about new experiments from Ron Davis I thought the same thing you've described in the first post. Viruses may have some proteins in...
  12. Tofer

    How I found the underlying cause of my CFS--anti NMDA antibodies

    Hello Shawn! My wife has CFS, she's just finished two IVIGs 50 ml of 5% Octagam. The first one she’s born more or less not bad. She got about 10% worse as I could see after it. We thought it was ok. But the second one has become really terrible. She had some bad reactions during the infusion and...