• 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. nelle

    Low dose Naltrexone

    thanks so much for all of the helpful info. i have gotten about 20 different variations as to how to dilute to ultra low dose - so am completely confused since i could not do math even before brain melted. my doc is pretty non pushy... i think it just makes sense to trial again at super low...
  2. nelle

    Low dose Naltrexone

    really appreciate your response & sharing your experience. so sorry you couldn't tolerate again. i wonder if that may be the same for me. & not just because my real name is ellen & my name here is nelle... it helps to hear that even micro doses may not be tolerated by some. sometimes i think...
  3. nelle

    Low dose Naltrexone

    that is great - love that all of you are benefiting. i really hope i can tolerate. i really don't understand what happened... i didn't dose last night & my mood is back to normal. but the areas of brain inflammation are back big time - especially in my ears. maybe i need to come in even...
  4. nelle

    Low dose Naltrexone

    good luck with all of it.. i hope something works for you.
  5. nelle

    Low dose Naltrexone

    this so helps me to know this, even while i am sorry you had problems as well at very low dose. i really hadn't expected to have any issues at all. especially after hearing how side effects were supposedly nonexistent. so when i started coma death napping & then went into PEM/crash i was...
  6. nelle

    Low dose Naltrexone

    thanks for those links & for sharing your experiences - were you able to continue with LDN?
  7. nelle

    Low dose Naltrexone

    so glad i came here even though i can barely read. since i had such bad experience on valcyte & got pulled off, my brain has stayed in a hyper inflammatory - reactive state. my new doc wanted to try LDN to calm things down. she prescribed 1 mg, but knowing how horribly sensitive i am i did an...
  8. nelle

    valcyte

    not a dumb question since i was on both. lerner will put patients on both that have ebv (valtrex) as well as cmv & hhv6 (valcyte). i have been on valtrex since last summer - i went severe at beginning of march 2014. labcorp testing showed reactivated ebv, hhv6, cmv. initially valtrex brought...
  9. nelle

    valcyte

    i hope you can get your other stuff under control & try again. & i hope you are doing better than i am. i am still underwater & struggling with .. all realms. today we had a weather change & all the areas valcyte hit in my head - killed me... i actually started experimenting again with...
  10. nelle

    valcyte

    having so many variables makes it really hard ... we get hit with everything & it can be impossible at times to (most times) to figure out what caused what. maybe if you start low & don't move dose up until you feel you are at your normal baseline?
  11. nelle

    valcyte

    i didn't have capsules.. mine were tablets - 500 mg. i may have started with 1/4 or 1/8th of that.. & titrated up. i was able to titrate to 4 grams/day within a month or so. lerner does it based on weight. he wanted a faster dosing but i didn't want to push through worsening. i wish, as i...
  12. nelle

    valcyte

    Did you start with very low dose? I found that was the key to managing the initial worsening when I started valtrex
  13. nelle

    valcyte

    I have been absent around here but thought I would just stop in & update. April as been pretty brutal on me. The areas in my head that got kicked up while on Valcyte have remained problems. It's almost as if I am in a hyper inflammatory state - that is set off by so little or seemingly...
  14. nelle

    valcyte

    @antares4141 - i sure wish things were easier for all of us.. so many of us are restricted by finances or support concerns. as if the disease was not hard enough. & we do the best we can. thank goodness for support forums like this. i really hope that soon there will begin to be better...
  15. nelle

    valcyte

    @Ema -wow, so much to think about for one who lies with eyes covered & eats & that's about it.. point of entry seemed to be the high viral titers once i went severe. valtrex brought ebv in immediately. i was under such stress though.. hhv6 went back & forth while cmv kept climbing. it make...
  16. nelle

    valcyte

    @Ema - how have you addressed your cortisol issues?
  17. nelle

    valcyte

    thanks, ema.. so many things wrong with us at once. i still can't get the doc to call me back about my current sleep slide. i am getting more funky ANS wackiness with less sleep.. & then it circles onto itself.. i did saliva cortisol but it ended at midnight.. i had low in morning & noon but...
  18. nelle

    valcyte

    ema, do you know if i can take GABA while using benzos for sleep? also i suspect the doctor will switch remeron for seroquel, so i don't know how that would impact it. are there other things i can do to calm the brain issues down - i am not sure if it is inflammatory or neuro-excitability or...
  19. nelle

    valcyte

    i am severe, so i understand how miserable it is & how easily one can go into PEM. it sounds like you have a lot going on.. mold illness, possibly lyme, maybe ANS issues like POTS since you are having that dizziness & weakness upon standing. is there any way to get tested for some of this...
  20. nelle

    valcyte

    actually, when i went severe last year & found the viral reactivations, i titrated valtrex in & had no issues - started improving. it was valcyte that just crashed me. i am still having neuro problems & now sleep issues that feel like a storm in my head in the middle of the night. i am...
  21. nelle

    valcyte

    i feel as if the valcyte really worsened my neuro symptom - so trying to thanks, emma. i suppose that is true about the porous bbb. ironically, i had just told myself, well, at least i'm sleeping. since i have severe insomnia even by ME standards. so as soon as i said that - my sleep has...
  22. nelle

    valcyte

    the T had quieted down a bit to its usual severe levels. at these levels it becomes the least of my problems. but it is a good thought. i had always thought GABA didn't cross the blood brain barrier.
  23. nelle

    valcyte

    sorry you are at this level - i hope you aren't as severe with the neuro cognitive & sensory stuff as well. i feel as if all i do is eat & rest. which is . all i do.. i actually did a micro amount of valcyte yesterday - my ears were screaming so much & then my eustachian tubes blocked - combo...
  24. nelle

    valcyte

    @Gingergrrl - thanks. i hope you can find improvement with the micro dosing. for most of my life i have had issues with drugs - like so many of us. always having severe reactions to regular doses of meds. lerner has nothing else to offer me. other than to stay on valtrex & rest. & see him...
  25. nelle

    valcyte

    i had hoped to see some improvement without being in a constant awful situation - but that was october... that sent me deeper into severe. & for some reason i relapsed in january as well. hence my worst viral titers yet at the beginning of feb. i really don't know what to hope for... lerner...
  26. nelle

    valcyte

    thanks... i have all 3 - ebv, hhv6, cmv - with cmv being highest. i did come off a year of hell with the way the marriage was blowing up while i was so ill. & the way it ended was highly traumatic - so that was my deeper relapse. i was hoping to start pulling out of it. but the viral titers...
  27. nelle

    valcyte

    i see soc just summed it up. he does care.. he probably would be retired if not for his commitment to this seriously ill population. but he is sticking with what he has done for all of these years & does not venture beyond it. i understand that. i was grateful to even have access since no...
  28. nelle

    valcyte

    @Butydoc - lerner is old school. i was surprised he engaged in as much dialogue today as he did. i did not mention montoya - i knew if i did, lerner would shut down on me. but he absolutely would not entertain the idea of trying to slowly titrate the drug in to tolerance. he would't go into...
  29. nelle

    valcyte

    @SOC - i am alone. no family or support. no money to hire what i would need for caregiving. i strongly suspect i would have similar problems with it. it is a brutal protocol - blood work day before & day after the several hours short stay visit. i am getting hammered just existing right...
  30. nelle

    valcyte

    @Gingergrrl - thanks. Dr Lerner does not consider Valcyte safe for me. It is no longer a treatment option. He seemed most concerned about my already severe tinnitus being pushed into extremely severe. (Seemed to abate a bitt today but being out has it amped bad again). When I asked of he...