A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
Discuss the article on the Forums.

mmm nothing is simple

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by heapsreal, Oct 25, 2010.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,489
    Likes:
    4,949
    australia (brisbane)
    I finished the cycloferon i was on and just taking the famvir, 4 days ago i woke up feeling rather crappy, by the end of the day the glands in my neck were sore and im thinking, right im starting to crash, what should i do. I have a heap of valtrex which i stopped using and i smashed a couple down when i got home that night, another before bed and another when i woke up, they are 1000mg strength. I did have to take a day off work but the crash was over in 2 days and feeling ok again, which is very quick recovery time for me.

    What im not sure about is that when my cfs started it was with ebv as well as the chickenpox, but ever since then have tested negative to ebv since that first positive, i also have cmv as well. I did use valtrex in the past but after an initial good response, slowly went backwards after the good gains i made from famvir.

    Im wondering if others have tested positive to ebv (IgG antibodies as well) and then future tests, tested negative? i also wonder if ebv can sit in the nerves or brain and not show up in blood tests, thus giving a negative antibody test, or is it an immune system malfunction that my body doesnt produce ebv antibodies, but ebv is still running around holding hands with cmv causing kaos. Does anyone know if natural killer cells have anything to do with making antibodies or stimulating the immune system to make antibodies, as my nk function is quite low. Any thoughts appreciated.

    cheers!!!
     
  2. kat0465

    kat0465 Senior Member

    Messages:
    230
    Likes:
    3
    Texas
    HI Heaps,
    for almost a year now my ebv titers have come back really high. my Dr. described it as chronic.she was going to put me on an antiviral( valtrex i imagine) and then never followed thru with the script( long story) well, lo and behold this last round of bloodwork, about 2 months ago.and suddenly my ebv titers are down to a non active level.

    don't know what made them go down, the only thing i did different was take some b12 and amino acid shots.i know this didnt do a thing virally speaking,so i don't have a clue why they dropped. i go back in November, i can't wait to see what the bloodwork shows. if thier up again, im not leaving that office without some kind of antiviral in my hand!!

    also another odd thing, my nk cells have went up to a kinda decent level.even with 2 positive things goin on, i still feel like total crap. i don't know what to make of it anymore.i swear if somebody made this **** up, it would be a sci fi movie!!!!

    Kat
     
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,489
    Likes:
    4,949
    australia (brisbane)
    hi kat,
    Thanks for replying, i think maybe our immune systems are so screwed up that sometimes they cant make antibodies but i dont think this means the viruses isnt there as antibodies are suppose to be the things helping fight the virus, my lymphocytes are always up but nk numbers are normal but nk function is low. I wonder if tested for no antibodies is that it may not be in the blood but in our central nervous system, like u said u still have symptoms, i think it would be interesting to see how u would react to antivirals even if no antibodies. I someyimes think with all the testing not everything can get picked up and u just have to try a treatment for awhile and see how u react. After adding valtrex the last 4 days im feeling better then i have for quite awhile, i might just do short courses of valtrex like say a week when feeling crappy and glands in neck start to hurt and just keep a maintenance dose of famvir going.

    once again thanks for the reply,

    cheers!!!
     
  4. nventor

    nventor

    Messages:
    93
    Likes:
    0
    Heaps,

    I'm thinkin Valcyte may be to these co-infections as Kryptonite is to Superman, I think you gotta do it.

    Best,
    Roger
     
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,489
    Likes:
    4,949
    australia (brisbane)
    yes roger, i know. I got to take that first step, lol. 6 weeks until i see my cfs doc and will need abit of time to accrue some funds, then i will run with it. I still keep searching for cheaper ways to do it, i feel guilty spending that much money on myself, but if i recover then its worth it, and i do have a feeling that it will help, with my viral history of cmv,ebv. It would be nice to feel normal and to sleep drug free, mmmmm.

    cheers!!!
     
  6. kat0465

    kat0465 Senior Member

    Messages:
    230
    Likes:
    3
    Texas
    Heaps,
    since i don't know a lot about AV's. can you give me some info on them? like whats the difference between Famvir an valcyte or valtrex??? and WHY, if our dr's say we have a justifiable reason for them and we have Insurance, are they so freakin expensive????!!!

    as much as i want to try them, i don't see how i can afford it. and i have really Good Insurance!! i mean it's like do you pay your house note, and eat or do you try something that may not even help!! so far it seems like Famvir is the safest.i am going to try and get my disability so maybe i can have more help with paying for meds.

    Kat
     
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,489
    Likes:
    4,949
    australia (brisbane)
    kat,
    expense is why i have been searching for reliable online pharmacy's but they are still quite expensive. Valtrex is basically for ebv and famvir is suppose to be the same but enough people have seen good results with famvir in there blood work that i think it has effect against cmv and hhv6 as well. valcyte is the big daddy supposedly good against all of them but used for cmv and hhv6 and stronger then famvir and the most expensive. I think the expense is why insurance wont cover them fully. alot of it comes down to educated guess or a therapuetic trial to see if it helps, if just ebv go valtrex, if cmv, hhv6 try famvir and if not getting enough response try valcyte, money of course also comes into it, these guys seem good and i will be trying them soon bigmountaindrugs dot com, any other questions fire away
     
  8. kat0465

    kat0465 Senior Member

    Messages:
    230
    Likes:
    3
    Texas
    thanks Heaps:)
    my ebv seems to be the highest, i do have hhv6 but no cmv( wierd) wow, just looking at those prices made me sicker! although famvir isn't too bad. i think i may try and start witht hat, and then go to the big guns if i make no Progress.

    you know, i feel the same way about the guilt thing. i bought a new pair of tennis shoes the other day and felt bad for days :( i think we have a problem with it cause we feel like we cant contribute( at least thats my problem) when i worked, i wouldnt have worried about spending the $$ for the meds.but then like Kelvin was saying, if i can get better, then it was worth spending the money cause i get my life back. Keep us posted on how your AV's are working, and thanks a bunch for sharing your info with us, lord knows we depend on each other more than anybody

    Kat
     
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,489
    Likes:
    4,949
    australia (brisbane)
    im the bread winner in my family and i feel guilty that im taking money away from something we should be spending on the kids or the house. If my back wasnt so bad i could work over time shifts that are worth some good money but have to get it sorted first, plus rest alot on my days off. it seems strange that im working more to try and pay for a treatment for this fatigue and working more makes it worse, but thats what im left to do. I think famvir is a good choice for you to as its works well against ebv and hhv6, a good starting dose is 250mg twice a day so if u buy the famvir from the site i showed u it will cost u about 285 for more then 3 months worth, just cut tabs in half, can also maybe try after doing 250mg twice a day, 500mg twice a day that will last u 7 weeks and if feeling better from it maybe work part time which would be a good goal. Like i tell everyone, give it a good 3 months before making a judgement on av's and remember its not a cure but help u become more functional. I have found since av's i have less brain fog, mainly only during a crash and when i crash, they arent as bad or as long but still just as frustrating for some reason, also i get alot less headaches then i use to, alot of people do say their cognitive stuff returns first, which i seem to agree with although i think my memory is worse. U could also try something for your immun system, cycloferon is what i use and its cheap and effective, cost$12 for 10 tabs and dose them 2 tabs in morn on empty stomache every second day and buy 40 tabs first up, this should be enough to see if it helps http://www.drugspro.org/skin-problems/cycloferon.html , it works in a similar way to imunovir buy way more economical. Cycloferon is from eastern european countries and used alot for herpes infections like ebv, cmv etc and hiv with other meds. so it should work well with av's.

    hope this helps abit more,
    cheers!!!
     
  10. Fejal

    Fejal *****

    Messages:
    212
    Likes:
    1
    >Im wondering if others have tested positive to ebv (IgG antibodies as well) and then future tests, tested negative?

    Yes I did. My MD reported this to me and it was after I was infected with XMRV but before bartonella spp.

    The bartonella definitely stops effective immune response.

    I also noticed that Human Pappiloma Virus wouldn't heal without a working immune system and vitamin D but cleared right up when those were addressed. Oh by the way, this also cleared up without any antiretrovirals drugs, just by fixing the bartonella blocked immune pathways and giving vitamin D.
     
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,489
    Likes:
    4,949
    australia (brisbane)
    diesel just posted a thread on ebv 'hidding', microRNA's help ebv stay hiiden, interesting read. I wonder if afew infection evade our immune systems like this and so we test negative because our immune systems dont produce certain antibodies. Thats why i think sometimes its best to just have a go at antivirals and see what response u get.

    cheers!!!
     
  12. Fejal

    Fejal *****

    Messages:
    212
    Likes:
    1
    My HPV clearing up in 48 hours following 4,000 IU of vit D3 wasn't "Hiding".
     

See more popular forum discussions.

Share This Page