ladybugmandy-xmrv, azt, and anyone else-question

Discussion in 'Fibromyalgia Main Forum' started by simonedb, Apr 11, 2010.

  1. simonedb

    simonedb Member

    Ladybug, read your post about how you feel better with AZT after 18 yrs cfs---
    curious, remind me, didnt you initially test negative for xmrv? did you eventually test positive or just try the azt anyway? how did you get the AZT? I had read that its a rough drug, that at first dose was too high for aids patients and azt killed more of 'em than the virus did??

    but my other questions around symptoms------I do not know if I believe that a virus or something else is the root of my problem, really confused, my thoughts change on this.
    I had recurring mono or something like it from ages 16-21ish then nothing that obvious since (50 now) now I am in phase last 9 years where rarely get really sick with flu type stuff anymore, immune system probably in hyperdrive, i am not a coughing runny nose infected seeming person. that doesnt mean I couldnt have an entero or retro virus of course, but i am curious ladybug, does your cfs manifest in such a way that you seem obviously "sickly"? i dont think even my sed rates and stuff like that ever seem weird to mainstream docs and i dont appear sick, it could be spinal and mitochondrial or porphria type stuff in my case, but as Cheney theorized, that could all be made worse cus of post-viral stuff. Just wondering though if the xmrv folks seem more obviously traditonally contagiously sickly or not?
  2. ladybugmandy

    ladybugmandy Member CFS started with "mono". most of my symptoms, aside from the fatigue, have been neurocognitive. i cannot think. my brain feels swollen. neck hurts...lymph nodes ache.

    last 4 yrs have been unbearable - bedridden - and i almost commit suicide many times.

    i did test negative to XMRV via PCR and culture but i am sure i will be positive by serology. i will have results next week.

    in the past, i have tested highly abnormal for many immune markers, including RNase L.

    i begged and begged an infectious disease doctor here for a trial of AZT. he finally agreed to a 1 - month trial of 300 mg/day.

    in 2 weeks, i feel about 25% better but this improvement still waxes and wanes.

    please follow my posts on pheonix rising message boards under the same name

  3. simonedb

    simonedb Member

    yes thanks for responding, I had gone to phoenix to see if you posted there last night and found the thread, very interesting. I have similar symptoms as you but can get around more historically. also my mono stuff that recurred was when teen/young adult and then i seemed to get better til a surgery but Cheney says the anesthesia probly actifed the virus cus the O2 is hard on us and makes brain swell and could have irritated my neck as well (also the surgery position can be hard on necks irregardless --see research by Dan Heffez and Dan Rosner)

    anyway, exciting, will keep following. I think I would be way too afraid to try AZT yet, just trying valtrex for week and half almost had me call 911 the side fx were freaky.
    du beauvoir
    (I respond to 'simonn' as well :) thats what I get for picking a silly alias)
  4. ladybugmandy

    ladybugmandy Member

    aussie...sorry about your birdie....i hope she makes it. i had a budgie once.

    yea i think people with all sortf of chronic problems have night sweats, especially infections.

    simone.. cool alias..i read 1/2 of the second sex eons ago. great book. sort of a fan of sartre too but havent read too much.

    so i am stalled at about 25% improvement and my brain fog is still very much present. i am not happy with this at all.

    i still cannot decide whether to add raltegravir to the regimen or not. dont want to take more drugs unless i have to, but cant stand this fog either. plus, dont want to risk resistance either.

    i have contacted a couple of docs who know about XMRV and asked them if they would advise my doctor. wonder if they will write back.


  5. simonedb

    simonedb Member

    sarte, 2nd sex etc yep my ole college influences :)

    and sorry too Aussie 'bout your bird :(

    well ladybug that would be very interesting if the docs got back to you, definitely keep us posted or will make sure to check in at phoenix, you are brave