• 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.

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  1. fablepd

    Abilify- Stanford Clinic Patients

    I mean, the Facebook group seems not to allow any new user.
  2. fablepd

    Abilify- Stanford Clinic Patients

    Unfortunately other user cannot join the Stanford ME Group. Any other info about the protocol please ?
  3. fablepd

    SIBO / Dysbiosis herbal treatment

    Hello. In the year 2017 I had Methane-SIBO for the first time in my life. Dyspepsia, bloating, constipation, it's terrible. The motilex drug (clebopride) didn't work at all. I suspected, thanks to this forum, that it was a Methane-SIBO, the one which gives constipation (...
  4. fablepd

    I'm 100% better, can function again

    i'm very interested in this topic. I tried Phenylpiracetam without Modafinil (which is the real drug which helps me a lot, but unfortunately is doesn't work on the second day, so i can use it only every 4/5 days...) and i had a bad feel , as being over excitated mentally but with more fatigue...
  5. fablepd

    I'm 100% better, can function again

    I developed ME/CFS with idiphatic hypersomnia after mono at age of 24.... ;(
  6. fablepd

    I'm 100% better, can function again

    Hi . I'm on Provigil and for me (but i know that it works only a subgroup of ME/CFS patients) it really changed my life. Unfortunately it only works every 4/5 days. If i use it the second day i become extremely fatigued (more than the terrible normal situation) with extremely dehydration and...
  7. fablepd

    Gamma globulin

    Hi ! Would like to know if you had any benefit from this treatment, since i should start to do next october ! Thank yoy !
  8. fablepd

    e. coli nissle/mutaflor and B12

    Hi ! After my microbiome test ( http://www.fable.it/public/wordpress/2017/02/04/microbiota-intestinale-mecfs-sibo-e-ultimi-aggiornamenti-in-materia/ ) the gastroenterologist had given me ECN (as Mutaflor) and acid butirric but my fatigue and constipation, from the beginning to now ( 2 months)...
  9. fablepd

    An Update on ME/CFS Research with Ronald W. Davis, PhD

    Hi to everyone ! Please, how these findings (ME/CFS is caused by something in the serum and not in cells) can meet latest study from Griffith University , where a defect in a receptor which doesn't permit calcium to enter cells has been put in connection with the ME/CFS symptomatology ...
  10. fablepd

    Isoprinosine and weight gain (Immunovir, Viruxan, ecc.). any suggestion ?

    Hi to all. I'm at the fifth month of Isoprinosine (in Italy it's called Viruxan, in other countries Immunovirs) , at the dosage of 500mg twice a day (every 8 hours) for 45 days and then for 15 days off, for a year. It causes me more drowsiness and for sure it's the cause of my weight gain. It's...
  11. fablepd

    Glutamine or Ornithine Alpha-Ketoglutarate

    Hi to everybody. Need some help from you . I have odd reaction in L-ornithine supplementation. While usually it helps , after 30' of ingestion of a 500mg L-ornithine (I use the Solgar product) i fall into deep sleep. Well, I discovered by chance that it's the best to sleep well in the night but...
  12. fablepd

    MSM

    Thanks hvac. I think that in case of CFS with liver problems (for example my very high bilirubin, both direct and indirect, even if liver enzymes now are OK, while after EBV infection they have been bad for years) MSM may be of help, but for other CFS types not. by the way , i usually take...
  13. fablepd

    MSM

    Just wanted to share my experience at 5th day of MSM (500mg in the morning with 500mg vitamin C). I have ME/CFS after a very strong monucleosis, with hypersomnia , brain fog, gut problems and memory impairment. I had great success with Provigil (modafinil) but i only could take it twice a week...
  14. fablepd

    low-dose hydrocortisone and provigil (modafinil) : side effects ?

    Thanks @minkeygirl for your suggestion ! I'll talk about it with my doctor. Another question for @heapsreal, please: do you think if i stop gradually hydrocortisone (after less than 5 months of use of 15mg/daily) it'd be too late for my adrenal gland to recover and start to produce again my...
  15. fablepd

    low-dose hydrocortisone and provigil (modafinil) : side effects ?

    Of course I agree with you . Thanks heaps real i simply didn't know that also in Italy it can be bought without medical prescription. I'll try it and let you know . Thanks !
  16. fablepd

    low-dose hydrocortisone and provigil (modafinil) : side effects ?

    Thanks a lot hepseral for your information ! That's very kind ! I'll try to talk about pregnenolone with my endocrinologist (late february ) but he seems so hydrocortisone-only-therapy .... i've searched for studies in pubmed about pregnenolone in chronic fatigue syndrome but haven't found any...
  17. fablepd

    low-dose hydrocortisone and provigil (modafinil) : side effects ?

    drob31 : I'm an unlucky case. I know people taking it for weeks without building tolerance but i feel really great with provigil taking half-dose (100mg) twice a week . I've been using for 1.5 years and i'm so glad to have discovered it. hepsreal: please, what's your opinion ? After how many...
  18. fablepd

    low-dose hydrocortisone and provigil (modafinil) : side effects ?

    heapsreal , i also have HHV-7 PCR virus active but other people with CFS and HHV- positive treated with valcyte had no imrpovements here in Italy ;( drob31 yes since i got mononucleosis and CFS i have narcoleptic symptoms. I have Provigil prescribed and it helps me a lot but i build tolerance...
  19. fablepd

    low-dose hydrocortisone and provigil (modafinil) : side effects ?

    I used euquinax (Panax Quinquefolius) , which has been described has very useful in chronic fatigue without any improvements in 2 months ;( never tried licorice, will do it ! :redface:
  20. fablepd

    low-dose hydrocortisone and provigil (modafinil) : side effects ?

    Thanks a lot heapsreal ! One strange thing is that my testosterone is high , even if i never tested DHEA . No one ever told me why it's higher than the standard range , and even if probably the case in the video is not the mine, for sure i'll talk with my endocrinologist about pregnolone ...
  21. fablepd

    low-dose hydrocortisone and provigil (modafinil) : side effects ?

    Hello. The only drug which really help me and almost solve all my CFS with hypersomnia symptoms is Provigil. I'm quite lucky because a lot of people with CFS see no improvements with Provigil. The problem , as i already wrote in another post here in Phoenix Rising, is that i have great...
  22. fablepd

    Help for endocrinological examinations for CFS with hypersomnia and immunodepression

    Thank you so much misskatniss and minkeygirl !
  23. fablepd

    Help for endocrinological examinations for CFS with hypersomnia and immunodepression

    Hi, I asked the endocrinologist for the glucagon test , after reading some posts about people diagnosed with CFS/ME having problems not showing with normal endocrinologic tests (TSH, TS3, TS4) (see http://www.investinme.org/Article-650%20MECFS%20PITUITARY%20AWARENESS.htm ). He only prescribed...
  24. fablepd

    Assoc of active hhv-6, -7 and parvo b19 ... in patients with ME/CFS

    Thank you !!! I'll spoke with my immunologist as soon as I can :)
  25. fablepd

    Assoc of active hhv-6, -7 and parvo b19 ... in patients with ME/CFS

    Hello. Just received my first (in my life!) test for HHV-6 and HHV-7 PCR and i'm positive to HHV-7. Is there a treatment against this virus ? I suffer from ME/CFS.
  26. fablepd

    Do we share this Fungus with AIDS ?

    The question is: after a blood or urin examen to test it, how can these mycotoxin be defeated ?
  27. fablepd

    Gilberts Sydrome and increased bilirubin. Do you have it?

    Usually my pulse pressure is OK, when checked it was in the medium of the range. Do you mean i should do a all-day pressure measurement ? Thank you for your suggestion, i'll talk with the doctor about it. The fact is that i need to sleep, even if for less than an hour, not only to lie down....
  28. fablepd

    Gilberts Sydrome and increased bilirubin. Do you have it?

    Hello to everybody from Italy. Just to know if anyone of you have high bilirubin (both direct and indirect, while the Gilbert only should have a slight indirect increase) with all enzymes (as ALT, GGT, etc.) within normal range. I suffer from chronic fatigue (after a strong mononucleosis in...