EBV: Immune System Damage

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Jun 27, 2008.

  1. ladybugmandy

    ladybugmandy Member

    hi all. i was wondering if someone could ask their doctor about this and how bad it is:

    EBV-associated mononucleosis leads to long-term global deficit in T-cell responsiveness to IL-15


    looks like people who have had mono have permanent immune system scarring.

    my doctor is not someone with whom i can ask a lot of questions....

    thank you

  2. foggyfroggy

    foggyfroggy Guest

    I've always thought Mono permanently messed me up. I had the worst case my doctor (who was in her 70's at the time) had ever seen. I'll ask my doc too although he'll probably scoff.

    Jam - where is your LLMD? I'm looking for one and will probably wind up having to travel to CA.
  3. ladybugmandy

    ladybugmandy Member

    hi all..thanks:)

    i think IL-2 has some overlapping functions.

    IL-15 is important for cancer fighting and controlling viruse-infected cells, i think.

    i think people who are on drugs that decrease T cells should be especially worried...?

    i would love to ask an immunologist about this stuff..and what we might do to improve our health now that we have had mono....i can't find any info on this.

    geez...it was bad enough that our MS risk is doubled

  4. ladybugmandy

    ladybugmandy Member

    you know what? i am driving myself crazy. i am seriously considering taking dr. lerner's advice and stopping my reseatch obsession.

    it isn't helping....it is driving me insane with worry....making me feel like a ticking time bomb.

    i am not a doctor and can't put this research into perpective.......UGH. why cant i STOP
  5. jasminetee

    jasminetee Member

    For years I've been reading about the IL deficits in CFS in the National CFIDS Foundation's newsletters. They have explained exactly how our immune system is negatively affected and permanently impaired. They've been hiring scientists to research CFS for decades now. I don't recall them saying that it was from EBV for sure but that doesn't mean EBV isn't causing the problem for some of us. I had a bad bout of EBV that knocked me down for a year when I was 20 and my immune system has never been the same since.

    I hardly ever got sick growing up. After being knocked down for a year with EBV I started catching more flus. Now I have horrible FMS pain and I catch flus back to back all year long. I felt like I finally understood what was happening to me after I read the NCF newsletters for about a year. There was one edition many years ago that explained the immune system problems very well.

    Basically, the front lines of the immune systems in CFS rev up and burn out, then the next line of defense steps up and now your immune system is already compromised, that line of defense revs up and operates on an overamped level and then burns itself out and so on... They don't know why parts of our immune systems rev up in the first place, but I'd say an ongoing viral infection could certainly be the culprit.

    They believe this accounts for the different stages of CFS. By the 3rd stage many of us are severely ill much of the time.

    I wouldn't expect my doctors to know any of this. I wouldn't even expect most CFS "Specialists" to know this. The research done by the NCF isn't accepted into mainstream medicine at all.

    I went to a TCM doctor a few years ago and after working with me without permanent success for a year she one day realized that my internal thermostat was broken. She was so sad when she said it because I'd been seeing her once a week for a year and the way she said the word "broken" let me know that she knew then, finally, that she couldn't fix me.

    I think that TCM has a way of detecting the same things that Western medicine can detect just in a different way and they use different words to describe it or they're describing things that are related to the same things Western med tests find. Interestingly, the NCF issue explaining our broken immune systems came out right about the same time she had her epiphany so I got the message.

    It makes sense to me. It explains why we don't die within just a few years like AIDS patients do without meds and why our illness is invisible to others and why we feel so absolutely miserable and suffer greatly so much of the time.


    [This Message was Edited on 06/27/2008]
  6. heapsreal

    heapsreal New Member

    I was negative to ebv in january 2002, was evidence of a past cmv infection though. In the june of 2002 i had severe chicken pox and blood test 3 months later showed i had ebv(antibodies) around the same time(when cfs started). Blood test i have had in 2006 and this year show i have no antibodies to ebv. I do have elevated cd8,iga,igg lymphocytes and usually low neutrophils. What can you make of that. My dr said its now possible i can get ebv again, maybe its still ongoing but have no immunity to it, any thoughts would be great.
  7. ladybugmandy

    ladybugmandy Member

    hello. when you say you had no antibodies to ebv, do you mean the test actually came back "non reactive"??
  8. ladybugmandy

    ladybugmandy Member

    glimmer of hope for one day eradicating EBV from the host:

  9. simonedb

    simonedb Member

    what is the ncf newsletter?

    also would damage to IL10 explain some of the multiple chemical sensitivity perhaps?
  10. heapsreal

    heapsreal New Member

    i had igg antibodies to ebv which are suppose to be with you for life, then couple of years later when tested i had no igg antibodies to ebv. A similar thing happened to me with hep b vaccine, i had the 3 vacination shots and blood test to make sure it takes then 10 years after this had no antibodies, my doc said that i should have had some antibodies not none. also when i had chicken pox it was the second time i had them, the first as a child. As my doc said my immune system doesnt have a "memory" So think its definately an immune thing that has given me cfs.
  11. victoria

    victoria New Member

    Does anyone know if there's anyway to tell if one had mono or cytomegalovirus in the past, or both? The reason I ask, is because I had 'mono' for a year with hep. A & meningitis (also bitten by a tick 2 weeks prior to falling ill).

    While my dx was mono of course then... I've now read that back then (1970) they couldn't tell the difference between the 2 except perhaps clinically. The clinical 'difference' was tonsilitis without having a sore throat, just swollen, which is what happened to me.

    I don't know that this really makes a difference, as obviously this opened the door for other 'stuff' over the years, and I have routinely cycled up and down; just never bad enough tho for anyone back then to take me seriously.

    But, I guess it's human nature to want to know 'why'...!?!

    all the best,

    [This Message was Edited on 06/28/2008]
  12. ladybugmandy

    ladybugmandy Member

    no problem!

    thank you for saying i keep you motivated....that was very flattering. you are very intelligent and with my awful brainfog, i am surprised i am of any help!

    AND thanks so much for telling me about resveratrol. i had never heard of it before!!!! this is quite a find....

  13. victoria

    victoria New Member

    it's a shame that they can't come up with some better testing somehow/way... it is a lot like lyme and other tick infections - they're all stealth pathogens!

    Yep, I know more than enough about lyme, as my son was tested in 2005, 2x, came up both times CDC+++ and is still battling it. I haven't been tested but have been working my way thru the Marshall Protocol... I've made a lot of posts on the Lyme board here in fact.

    In fact it was my response to the MP, the closeness of my/our symptoms, etc that made me aware of lyme prior to my son really going downhill, and once his internist couldn't see anything wrong, I took him straight to the best LLMD closest to us.

    all the best,

  14. victoria

    victoria New Member

    Hope you get your test done soon, and keep us posted as to your results!

    all the best,

  15. ladybugmandy

    ladybugmandy Member

    what do you guys make of this?

    so after mono....the IL-15 doesnt work anymore....and STAT1 induces IL -15...and CFS people are STAT 1 deficient according to de meirleir and others.

    so....maybe STAT 1 keeps being produced to make more IL-15 cuz our IL-15 never works....

    and then viruses run rampant...?

  16. ladybugmandy

    ladybugmandy Member

    in a 2001 paper, i read:

    In vitro, IL-15 mediated complete elimination of EBV-infected/transformed lymphocytes via successive activation of NK and NK-T cytotoxic effectors. If these in vitro findings reflect in vivo mechanisms, then IL-15 might be considered for cytokine-based immunotherapy in patients with EBV-associated lymphoproliferative disorders/malignancies.

    so....if our IL-15 doesnt work the epstein barr virus can't be successfully dealt with!
  17. ladybugmandy

    ladybugmandy Member

    so dr. lerner told me via email that there is not enough evidence to say whether "abortive" ebv infections can be dealt with via valtrex....but he is using valtrex..so...i dont know...

    i can only find evidence to say that acyclovir/valtrex helps with the lytic stage of reprodcution, which we already knew.

    dr. lerner also said there is not enough evidence re: valcyte and abortive HHV 6 infections.

  18. ladybugmandy

    ladybugmandy Member

    hi kelly!

    i do not think elimination of the virus is possible..i know that article said elimination but maybe they just meant elimination of the acitve virus.

    as far as i know, the only way to eliminate the virus right now is an allogenic stem cell transplant.

    yes EBV is most certainly a neurotropic virus!

    i wish some information regarding montoya's biomarker testing would be released preliminarily. i am so sick and need to find out if there is at least a change in my blood. i am losing patience.....

    i know there are people who didn't respond for 2 or 3 or 4 years....but how can one wait so long with no quality of life? i can't even do anything meaningful because of this brainfog....:(

    i do not know what i would do even if there was no difference my blood...there aren't many treatment options out there.

    i head peterson does cytokine profiling often during treatment. maybe i will get this done.

    [This Message was Edited on 06/30/2008]
  19. ladybugmandy

    ladybugmandy Member

    ran into Hydroxyurea as potential drug for acting on cells with latent ebv....
  20. Lichu3

    Lichu3 New Member

    on switching EBV from latent into lytic state (so antivirals may work), use of cytoxic T-lymphocytes as treatment (which may work even in the latent state), and development of EBV vaccines -- my wishful thinking that this may make the virus more "transparent" to the immune system.