1. ladybugmandy

    ladybugmandy Member

    one reason to do the RNase L test is to monitor how you are doing with treatment. also, it can give you a clue as to whether you have an active virus.

  2. ladybugmandy

    ladybugmandy Member

    thank you for asking about me and suggesting LDN. i have heard good things about it for quite some time but have never asked my doctor about it. maybe i will do that soon. my only concern is that it might affect my liver enzymes.

    there used to be a lab other than redlabs (immunoscience labs i think) that did the RNase L test but i am not sure that they still do.

    i am doing very poorly. late last year, i had improved 35% or so after a long time on valtrex+valcyte. i think my deterioration probably had to do with the fact that my doctor at the time began stopping or reducing the valcyte dose due to liver toxicity concerns. i have since stopped seeing him (he recommended cidofovir but it was cost-prohibitive for me).

    i now take valcyte+valtrex at the full dose and am praying that i will once again respond. i am hoping that my current horrible state is a result of viral die-off but i know it could well be that i have developed resistance to ganciclovir.

    hope you are doing better....

    love
    sue

  3. ladybugmandy

    ladybugmandy Member

    thank for the compliment and suggestions:)...i did not know immunopro tasted better than immunocal. i just could not stomach immunocal after a while. it made me gag and i just couldnt handle one more unpleasant thing. thanks for telling me....perhaps i will try immunpro. i know it is always recommended by the people at the HHV6 foundation.

    i am not so resilient! i battle severe depression and suicidal ideation daily. i just do not know if it is too late or not. it is so hard to tell the state of the infections. i have also begun to twitch a lot and developing MS is a concern, along with, of course, cancer. i am hoping that the therapist i started seeing will help me focus more on the present (as miserable as the present is! LOL) rather than worrying about the future.

    there are so many unknowns and precious little data for us to go by...i think everyone on this board should be admired. what we are doing will help so many patients who come after us....

    love
    sue
  4. simonedb

    simonedb Member

    hey sue
    I am new at AV's, but you saw my post about valt and artesunate.
    I am thinking preliminarily that perhaps one or both of them have improved my energy. I am not taking either one this week but did last week. I am wondering if pulsing is the way to go. gives body a break and you get the encouragement of that plus hopefully some increased energy. I am going to keep playing with that, just listen to my body.
  5. heapsreal

    heapsreal New Member

    can i ask what immune modulators your thinking of. I have used inosine (similar to immunovir/lot cheaper) with some success. Even immune stimulants other then the typical echinacea type stuff, maybe the medicinal mushrooms shiitake etc that increase neutrophils and natural killer cells maybe of some use, problem is whats scientifically proven to be useful. I have also wonder about thymic protein, have read studies where it improves immune function. I think using AV's with things that strengthen or own immune systems is the way to go. Im going to ask my doc about occassional IV AV's (acyclovir) is alot stronger then oral acyclovir , but also stay with oral AV's.
  6. ladybugmandy

    ladybugmandy Member

    thanks for posting, guys. it helps to read your responses and makes me feel less alone. the severe swollen head feeling is mind-numbing. like the walls are closing in. so hard...

    i also wouldn't recommend pulsing antivirals like valtrex or valcyte but i know that people with RRP (Recurrent Respiratory Papillomatosis) do not take artesunate or artemesinin continuously.

    artesunate might turn out to be the holy grail for CFS one day...

    i bought a bunch of very expensive mushroom extracts but had to stop them once i started seeing dr. lerner, who would not allow them. i think i have some coriolus frozen. there was one bottle of something (reishi or chaga or something) that cost me $200!!

    i also think that the LMW RNase L ratio is more important than the overall RNase L activity. the last i checked the LMW was all i had. i just haven't tested it for over a year even though i meant to.

    it sounds stupid but i am too ashamed to go back to my old workplace (a hospital) where a friend of mine takes my blood for me so i can send it to redlabs. i have shown up there a few times saying i am better and hope to come back soon etc etc....i don't even know what most of them think of me or this illness...just don't want to face them this sick...hard to explain.

    well thanks again, guys.

    love
    sue
    xoxo




    [This Message was Edited on 07/30/2009]
  7. heapsreal

    heapsreal New Member

    I know what ya mean about people that dont understand. The last couple of years i just bite my tongue and tell people nothing, but thats hard has you feel like venting. lucky we can vent here. I had one guy tellking me how he got glandular fever and was sick as a dog for 8 weeks, i just sat there and nodded my head but felt like saying buddy i have had it for 7 years, but i think he would have looked at me strange too.

    As for mushroom extracts, i think there alot cheaper these days, there is a product here in australia that has astragalus 5000mg, olive leaf extract 3000mg and shiitake mushroom extract 2000mg which are strong dosages, its called ki immune defense, will try it down the track.

    In australia the testing needed for cfs is limited, cant get RNase tested, cant get ebv titre values only positive or negative for antibodies, the only thing that has been helpful is lymphocyte subset testing. Neutrophils are standard on most blood tests.

    At the moment Im taking my usual famvir 250mg twice a day and last week or 2 have added 200mg of acyclovir twice a day, havent noticed much of a difference yet, but will stay with this for 6 weeks. Wish i could afford higher doses of famvir, already paying $200 a month for it, but it has got me back to work fulltime so its worth it.

    Stay positive sue, ps did you get an email from me awhile ago, i sent one when you posted your email address a few weeks ago, take care.
  8. simonedb

    simonedb Member

    hey
    thanks for all the info guys. LDN is immune modulator too but I dont like that you cant take opioid if get into a bad pain spell and it made me depressed over time, I gave it 6 mo., I think it must have blocked my endorphins too much or something,but it did help initially with pain suppression but seemed to make me stupider too.
    Inosine may be the way to go with immune mods.

    So is valtrex like abx where doc says if you stop taking it too soon the infect could come back worse? The thing I dont get with taht though is 10 dif docs might recommend a dif length of time to take valtrex from one day to one week to one year, how do we know which one is the right one?
    Sue I just worry for you that part of the reason you feel bad is side fx from the antivirals.
    Maybe you could try artesunate as that is rec'd to be taken for like 5 days staight then 12-x week and then every 60-90 days take another 5 days in row.
  9. ladybugmandy

    ladybugmandy Member

    heap...i am sorry things are so bad for CFS in australia but it is amazing that you can work full time! i guess you dont have insurance from your work to cover the antivirals? canada is one of the worse places to be with CFS also.

    simon...i wanted to try immunovir but my doctor wont prescribe it. i can ask another doctor but i am taking so much right now that i am reluctant to take another med.

    maybe the antivirals are affecting my mood, i just cannot tell. i am despondent. maybe some new antidepressants will help, i am seeing a psych next week. i am just too worried about stopping antivirals because they seemed to work last year for me, and i am so sick. if i was less severely ill or if my illness was new, i would be more apt to experiment with other things...

    dr. lerner says most patients have to take them forever.

    right now, my goal is to stay alive long enough (and not in constant agony) so that my sister, who is developmentally handicapped, is somewhat settled...but if i remain in this state, even that is a long shot.

    love
    sue
    xoxo

  10. simonedb

    simonedb Member

    oh i experimented with dose on LDN, and eventually settled on a very small one because couldnt tolerate even 1 mg a day. I am exquisitely sensitive and for about 6 months it worked sort of until neck got flared up and it couldnt cover the pain, and if I am in too much pain my world stops so that was that, it took a lot of time to get it completely out of my system. my experience is by no means the norm, probably very rare, and if you dont have bad spinal problems or awful pain than I recommend experimenting with LDN, but for me it was dilemma to be on it when i got in flare up because I couldnt treat the pain until it twas out of my system and I only have luck with one pain med, have tried many so I was stuck having to suffer for a while.
  11. simonedb

    simonedb Member

    LH-I am lucky to have a couple of dif docs I could call upon nearby that are fairly open to experimentation, but I asked a shrink to get me the LDN and he likes innovation so obliged. Only one pain med has worked consistently for me over the years without much side fx, I have some detox issues where most meds are too complicated for my body to break down, but old fashioned darvon is the one that Ihave had luck with, but it is a opioid, albeit some consider weak one but for sensitive me it helps and the LDN pharmacist Skip didnt even think you need to be off darvon for more than 3 days to start the LDN and maybe thats true for most but that threw me into a week of hell headaches unbearable w/d so I had to wait 2 weeks to start over, seems LDN is sticky in my system because on the back end its supposed to go out in a day but it took a week or so to sort of tolerate the darvon again when I went back on it after 6 mo.s off and then months to really feel like some weird interactions between the leftover LDN (mabye in my fat cells?) and darvon ended. ONe lady on the LDN boards can tolerate both LDN and darvon. I also got more depressed eventually on the LDN and super spacy and at times grumpy, my doc thinks maybe it blocked the endorphins too much for me. I feel bad for addicts back in the day that were maybe made to be on 50mg of that stuff a day, must have been death on earth for the sensitive ones.

    LBM-inosine and immunovir very interachangeable, you can get inosine online and heapsreal listed a cheap way in my artesenuate/antiviral thread
    you can also get artesenuate on line thru reliable califormina site, the med is called hepasunate or something

    [This Message was Edited on 07/31/2009]
  12. ladybugmandy

    ladybugmandy Member

    hello. i think pine cone extract is supposed to be good...i know that some doctor who did foscarnet, was 'cured' of CFS for 2 years, and then relapsed, is now using pine cone extract.

    not sure how he is doing, though...so i guess this wasnt much help!
  13. mekael

    mekael New Member

    I am using pine cone extract Immunophen. It is working!