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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. JayneM

    Famvir and disturbed sleep

    Thanks for that tip :) Yes, I was thinking of doing that as your thread has helped me greatly. Still feeling hopeful. Definitely more functional in the 3 weeks I’ve been on the Famvir than prior to it - so I think that’s a good sign. Actually this is the longest good period I’ve had in nearly...
  2. JayneM

    Famvir and disturbed sleep

    Good to know! Haven’t tried the Benadryl yet but have a nighttime sleep formula with melatonin in it. Used it last night and didn’t have to get up so maybe that will do the trick. Will keep the Benadryl in mind though. Like you, noticed that overstimulation feeling and my HR has had its...
  3. JayneM

    Famvir and disturbed sleep

    Thanks BadBadBear, I’ve been following your story and I’m impressed by the progress you’ve made. Sounds like I’m experiencing something similar to you, so I hope I have similar progress. Time will tell. Thanks for the heads up on the Celebrex, I’ll see how I go.
  4. JayneM

    Famvir and disturbed sleep

    Thanks Shoshana. Also realised that i’ve been sneezing on and off since I started it, so I’m wondering if it’s not so much of a cold but a reaction that they say you can get when first starting? Who knows?! It’s definitely helping though and I feel like my immune system might be trying to...
  5. JayneM

    Doctor in Melbourne, Australia to prescribe Valtrex (Valacyclovir) for 6 months

    Could you print out Learner’s or Montoya’s work? Even Dr Pridgen and take it to them? I printed out Dr Pridgen’s publication and my Rheumatologist put me on Famvir (about to start Celebrex) as he was happy with the safety profile of the drug. I’m in Sydney so I know that’s not helpful but I...
  6. JayneM

    Famvir and disturbed sleep

    Hi guys, I started Famvir 3 weeks ago (2x 500mg per day) and this past week I’ve started having disturbed sleep - waking up 1-3x per night and having vivid/active dreams. Has anyone else experienced this? I also came down with a cold and this coincides with the timing of the interrupted sleep...
  7. JayneM

    Mestinon + Famvir - whoa!

    Thanks for posting these updates. I’ll be starting Famvir and Celebrex at the end of next week, so I’ll continue following your story. I hope you continue to see improvements.
  8. JayneM

    Me/cfs doctors in Sydney, Australia

    How are you doing now Hotch? Have you had any other treatments or further improvements?
  9. JayneM

    Is it possible to get your life back? Has anyone here done it?

    @aquariusgirl Found a Rheumatologist that's been understanding and helpful, also willing to try treatments such as LDN - which didn't work for me. He's also going to try Dr Pridgen's antiviral/Celebrex combo since I responded well to high dose L-lysine + other herbal antivirals (EBV is the...
  10. JayneM

    Is it possible to get your life back? Has anyone here done it?

    Something positive to help you cope with this is that you've had it for 9 months so you're still in the initial stages of it, though I know it's super hard to deal with no matter the timeframe BUT there seems to be a subset of people that can get a handle on it and provided they've not had it...
  11. JayneM

    Partial remission for a day

    I'm glad you posted this, as I've also experienced something similar twice - once after taking Mutaflor and the other after taking Pregnenolone. These things gave me 2 fairly good weeks where the brain fog lifted, gut felt a bit better and i didn't feel like I was dragging my body around so much...
  12. JayneM

    Is it possible to get your life back? Has anyone here done it?

    Yes, it's possible. Even in long-term sufferers like me (10+ years). I've gone from severe - bedbound/housebound to moderate/mild and work a desk job from home. I met my husband prior to getting sick but he's stayed with me the entire time and gone through the worst of it with me. Pretty...
  13. JayneM

    Amoebas anyone?

    You're welcome Ann, glad I can be of some help. One last thing I'll say is that I've noticed when I've chatted to a couple of my male friends who have either fought parasites or are dealing with ME/CFS, they struggle with the stigma of having invisible chronic illnesses and society's...
  14. JayneM

    Amoebas anyone?

    Also Ann I've got a Fitbit which has helped me determine how much movement I can do without flaring up or crashing, and tracks my heart rate so I know when I need to stop what I'm doing or ease up. Getting out of that push/crash cycle is important. I've found deep breathing helpful but while I...
  15. JayneM

    Amoebas anyone?

    I'm glad I can be of some help and give you some hope. I remember how fearful my parents were watching me decline and become so sick, so I'm glad to give you some reassurance. Answers to your questions: - I didn't have any outside help and only had help from my parents and then boyfriend...
  16. JayneM

    Amoebas anyone?

    I'm familiar with Entomoeba Histolytica and knew of someone who went to the Centre for Digestive Diseases in Five Dock, Sydney, Australia. They've got protocols (I think) for certain parasitic infections such as Entomoeba Histolytica, Diebtomoeba Fragilis and Blastocystis Hominis. Pretty sure...
  17. JayneM

    Amoebas anyone?

    Also Ann I'm 30 yrs old so not far off your son's age and I found my mid 20's to be the toughest but I've gotten through. I'm even looking at starting a family with my husband (got my specialists approval) so that gives you another idea of just how much better I am. Keep the hope going and when...
  18. JayneM

    Amoebas anyone?

    Sorry to hear that. I hope like me, with persistence, lots of rest, trying treatments and seeking answers that he starts to improve again in time. Do you know what amoeba he has/had? I was bedbound/housebound for 3 years up until 2 years ago (I've had ME/CFS for 10+ years) and now I'm at the...
  19. JayneM

    Amoebas anyone?

    The primary cause of my ME/cfs was an acute bout of glandular fever however, I got significantly worse after travelling to Thailand and getting food poisoning. All of my doctors thought I'd picked up some sort of amoeba and I had a lot of courses of metronidazole, mebendazole, doxycycline etc...
  20. JayneM

    Did you have any strange 'episodes' before M.E properly took hold?

    I started having feelings like I was losing homeostasis and instead of getting an endorphin kick after exercise, I'd feel like I was coming down with the flu and was really drained - like I was a toy that had the batteries pulled out of it. Also started getting costochondritis and lots of...
  21. JayneM

    Adding Vegetables and Herbs to Diet

    Apart from the great advice that other users have given you, I would suggest getting a comprehensive stool analysis done for a bit of guidance. It might be that you are lacking in species that can sufficiently break down fibre and that might be contributing to some of your symptoms. I had...