• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. Pendergast

    Nurosym Vagus Nerve Stimulation Device

    Hi @Wishful , I Totally agree. Just unable to read medical stuff due to brain fog so I will not buy the device at the moment. This made me laugh 🤣
  2. Pendergast

    Vagus nerve stimulation - Nurosym device

    I found today the Nurosym web and I'm thinking about buying it but not at this moment because it's too expensive. Apart from the price, it seems very "ME/Lyme/Long Covid" oriented, with scientific stuff and testimonials behind it. Maybe a lot of Marketing? Just thinking of it because other...
  3. Pendergast

    Nurosym Vagus Nerve Stimulation Device

    Thanks @Judee ! I searched it before posting but did it wrong, I put "Neurosym" 😅 so I didn't find that thread. I apologize and please feel free the admins to delete this thread! 🙏🤗
  4. Pendergast

    Nurosym Vagus Nerve Stimulation Device

    https://nurosym.com/ Hi! 😊 Does anybody know about this stuff? It's quite expensive I think (699€) although it has a 30 day return policy. It seems to have some scientific backgrownd and testimonials... Supposedly it works for ME, Long Covid, Lyme, Depression...and go on... Anybody has used it?
  5. Pendergast

    Is ME/CFS pain caused by coxsackievirus B activating TRPV1, a receptor involved in pain, inflammation and regulating body temperature?

    This is really interesting... The only thing that worked with my chronic nausea (one of my most debilitating symptom), in it's worst, was capsaicine.... Also, the thing that worsen my nausea the most is cannabis, which I think interacts with the TRPV1 too. And I have positive IgGs to Coxsackie...
  6. Pendergast

    Abilify- Stanford Clinic Patients

    This is my 7th day on 0'2 mg and I'm feeling much worse. Hard flu-like feeling and a moment ago I had a big dizziness which scared me a little bit. Not sure what to do. I'm wondering if this worsening will be transitory, during the titration phase and then feel better. If I stop it all this...
  7. Pendergast

    Abilify- Stanford Clinic Patients

    Hi all :), After trying Mestinon with no success I started Abilify two days ago. 0,1mg I will report here how I do with it. Hugs!:hug:
  8. Pendergast

    Chronic nausea

    @Mimicry which dose of Mirtazapine are you taking?
  9. Pendergast

    Need some help, incredibly ill in waking hours

    @maybe some day did you look into sleep apnea?
  10. Pendergast

    Metabolism / weight loss

    Exactly the same here... :rofl: @Emmarose47 some meds can help to gain weight (Mirtazapine for example)
  11. Pendergast

    Abilify tolerance

    @leokitten how are you doing? Is your second chance with Abilify still working? (I hope so:angel:)
  12. Pendergast

    How long does Mestinon take to work?

    Exactly the same here. I started with 30mg/day and after +one month with 120mg/day without clear benefit (nor negative effect) I'm thinking of giving up and try Abilify next. Maybe it has some "PEM preventive" effect as Systrom's study indicated so it could make sense to take 60mg only when...
  13. Pendergast

    Sleep apnea

    Yes, the whole diagnostic stuff was really uncomfortable and challenging. For me it was difficult to fall asleep (I had to take an extra dose of sleeping pills). I also had to repeat the measurement a second night because they gave me the device with dead batteries so the first night it didn't...
  14. Pendergast

    Sleep apnea

    Hi! In my case I have been underweight all these years in which I had the symptoms that have now disappeared or improved with the CPAP (This is the only way I have to be sure that I had the apneas all this years before the diagnosis). So definitively, weight was not a factor in my case. Also...
  15. Pendergast

    Sleep apnea

    Hi all! I was diagnosed with sleep apnea one year ago after a sleep polygraphy made at home and was put on a CPAP. I noticed a great improvement since the first day. The wake up feeling of being poisoned, as @Thinktank says, was gone. No more need of long naps during the day and less...
  16. Pendergast

    Ron Davis Update

    This!! :thumbsup:
  17. Pendergast

    New Systrom Study: PPAR Delta for ME/CFS

    I think this is the kind of studies we need. Less hypothesis and more treatment focused. Just try the drugs and see what happens.
  18. Pendergast

    Poll: Mestinon Trial

    Hi all! I copy here my experience with Mestinon from another post: I started Mestinon few days ago. First 15mg, then 30mg and now I'm taking 45mg. It was prescribed by my Neurologist. I was a little bit afraid about taking it. Thus far I tolerated it well. I pretend to reach 60-120mg/day I...
  19. Pendergast

    Neurovascular Dysregulation and Acute Exercise Intolerance in ME/CFS: A Randomized, Placebo-Controlled Trial of Pyridostigmine (Joseph et al, 2022)

    I started Mestinon few days ago. First 15mg, then 30mg and now I'm taking 45mg. It was prescribed by my Neurologist. I was a little bit afraid about taking it. Thus far I tolerated it well. I pretend to reach 60-120mg/day I did not notice any benefit (nor bad effect) yet. At least this study...
  20. Pendergast

    The Benefits of Oral Rehydration on Orthostatic Intolerance in Children with Postural Tachycardia Syndrome

    I read Cort's article, bought the oral rehydration solution and did some challenges. I don't have POTS but drinking the solution during a big effort, decreases notably the PEM during the next days. (Less muscle pain, flu-like symptoms, fatigue...). For me it worked and it's cheap here in...
  21. Pendergast

    Long Covid

    Could this news be related to this? : "Chronic post-COVID-19 syndrome and chronic fatigue syndrome: Is there a role for extracorporeal apheresis?" https://www.nature.com/articles/s41380-021-01148-4 (I can't see the reference supporting that affirmation).
  22. Pendergast

    Anyone know about Berlin Cures BC007/cured Long Covid cases (applicable to ME/CFS)

    They told me (in a preliminary appointment) about Corticosteroids, IVIG and Immunossuppresants... I'm not sure what (if any) will finally offer to me and what stuff I would agree taking... As you say, only time will tell :sluggish:
  23. Pendergast

    Anyone know about Berlin Cures BC007/cured Long Covid cases (applicable to ME/CFS)

    There is disease. There are some AABs. There is a drug neutralizing them and there is improvement. It looks interesting to me. :nerd: I have disease. I have high Alpha1, Beta1-2 positive AABs. Hoping my Dr could offer me some drug to try (now or in the near future). Maybe I could improve or...
  24. Pendergast

    The Puzzle Solver, by Tracie White with Ron Davis

    I will have to wait until it's available in Spanish! :rolleyes: but I will buy it for sure, as I did with Unrest and Millions Missing T-shirt! Ron, Whitney, Jen... They helped me so much in being understood by my family so this is the best way I know of giving them some feedback!! :angel::hug:
  25. Pendergast

    Abilify- Stanford Clinic Patients

    :love::rolleyes::love:
  26. Pendergast

    Severe Nausea Attacks - new symptom

    I would consider trying capsaicin. It's the component of the spicy peppers. It has "anesthesic like" propierties (I know that it sounds paradoxical). I have chronic nausea, daily, for +20 years. It's the hell. I tried a lot of stuff (including diets, supps, Ondansetron and other meds, ginger...
  27. Pendergast

    OMF- #MayMomentum campaign is here!

    Thank you @wigglethemouse !:)
  28. Pendergast

    OMF- #MayMomentum campaign is here!

    Anyone has more info on this? I don't have a clue about Kynurenine and I thought Mestinon was used mainly on POTS patients. Which have been the reasons for selecting this two drugs instead of others (Copaxone, Suramine..) for the first two treatment trials?
  29. Pendergast

    Human Herpesvirus-6 Reactivation, Mitochondrial Fragmentation, Paper Pub. 4/1/20 - Dr. Prusty

    I don't have scientific clue neither but that makes sense to me... And antivirals are very toxic stuff in the long term. I think we can't beat those small f..ing bugs... So I think the treatment should be telling the cells to stop the CDR instead. Maybe finally the CBT will be the answer! We...
  30. Pendergast

    Human Herpesvirus-6 Reactivation, Mitochondrial Fragmentation, Paper Pub. 4/1/20 - Dr. Prusty

    Unable to read all the study at this moment. :ill: Does Prusty say if others viruses aside from HHV-6 can cause the same problem? I think he said on Twitter that EBV or CMV too could cause the mitochondrial stuff but wondering if he mentions it in the study.