HELP Does Chronic EBV Mean I Don't Really Have CFS???

Discussion in 'Fibromyalgia Main Forum' started by bunnyfluff, Apr 8, 2007.

  1. bunnyfluff

    bunnyfluff Member

    I am really confused about the Dx here. I was Dx'd with CFS, but I also seem to have Chronic EBV. But according to the standards now set by the CDC, one excludes the other. So, does that mean for disability purposes, etc., if I go for it based on my Dx for CFS, will I be excluded because I now also have Chronic EBV??

    Is it possible to have both according to the new diagnostic standards, and does anyone have experience with this??

    Just asking.
    Bunny
  2. Kellyslaw

    Kellyslaw New Member

    Happy Easter Bunny! I only know that EBV is mono. Almost everyone in the US who has attended public school, has been exposed to EBV. My blood work came back positive for EBV. My doc said that she would have been suprised if it had not came back positive. I have fibro and CFS. It is my understanding that CFS can only be dxd if there is no other reason for the chronic fatigue. How long have you had symptoms of chronic fatigue??? When were you dxd with EBV??? You doc can tell you which one you had the symptoms for first. (kinda like the chicken or the egg). I would ask for your med recs and see if you were dxd with CFS before you were positive for EBV. Does this make sense?

    I hope this helps,
    Kelly
  3. bunnyfluff

    bunnyfluff Member

    results are massive elevations/reactivations that have gone on for 6 months now. My "active" # is currently 1795 (pos > 120) it has been as high as 2500+ in the past 6 months. It is a subset unto itself, is my understanding, however, I am afraid by current CDC guidlines, it will be used *against* me.

    I was given my Dx of CFS first, but now that I also have Chronic EBV, I am afraid it will be brought up and they will say i don't actually have CFS if I apply for disability.


    Happy Easter to Y'all!

    Hope you liked your baskets!![This Message was Edited on 04/08/2007]
  4. irishprincess

    irishprincess New Member

    i was dx with ebv about thirty years ago. than through the years have come to learn that now ebv is now known as cfs, and found out on this peticular board that cfs can automatically go into fibromyalgia. Soyou see ebv is not mono persay. the bacteria that causes ebv is the same bateria that causes mono, chicken pox, and herpes so and all of them are different ailments.
    hope i helped some what irish
  5. mezombie

    mezombie Member

    There is such a thing. It is rare, but it exists.

    The feds and private disability insurers do not give a hoot what your diagnosis is. They look at how debilitatd you are. The question is: Are you able to work (and if you're going for SSDI, that means ANY kind of work) or not? So they're looking at your ability to function, not at what causes your disability.

    Like Stovetop, I'd be more interested in what kind of treatment your doctor proposes.

    [This Message was Edited on 04/08/2007]
  6. Kellyslaw

    Kellyslaw New Member

    that I was only relaying what my doctor told me. This is why I don't like to post on these boards. It seems as if everytime I try to say something that might, and I stress, might, help someone, others can't wait to argue or disagree.

    Best of luck Bunny,
    Kelly
  7. Lichu3

    Lichu3 New Member

    My SSDI lawyer (who has been involved in >200 CFS cases) gave me a copy of SSR 99-2p, the Social Security ruling on CFS in 1999. Under the section on "Examples of laboratory findings that establish the existence of a medically determinable impairment," "the following laboratory findings establish existence of a medically determinable impairment in individuals with CFS:"

    One of these is "an elevated antibody titer to EBV capsid antigen equal to or greater than 1:5120, or early antigen equal to or greater than 1:640." So if you have an SSDI lawyer, please ask them to examine this ruling.

    This ruling is more important for SSDI purposes I believe than the CDC definition. As many posters say though, you still may need to prove functional disabiliy besides "proving" you have CFS if your labs, tests fit this ruling.

    "CEBV" in the strict medical sense is a severe disease that most often occurs in immunocompromised organ/ stem cell transplant patients with early antigen of at least 1:640.
    The term though has been used interchangebly sometimes with CFS since many of us have high EBV titers - although not as high as 1:640. The meaning of high EBV titers in CFS is still uncertain although it may mean reactivated EBV in those with HHV-6A.

  8. bunnyfluff

    bunnyfluff Member

    My God, I feel horrible!! But I have no way of really knowing if it is because I am so sick from the EBV, which @ some point could be cured, or not.

    Kelly, chicken & egg really describes the whole mess. Is it the CFS that makes this so awful, or the fact that the EBV compounds it even more?

    If I have had extremely high EBV titers for 6 months and anti virals don't work, etc., then what makes me think I will ever get better at this point?

    I am currently trying the Rife machine as well as toxic cleansing. But i don't feel much better. I think the less strong ones die, but the others fight harder to live in my body, to tell you the truth.
  9. Lichu3

    Lichu3 New Member

    Bunnyfluff,

    Mezombie just posted the ruling I referred to so take a look at it.
  10. bunnyfluff

    bunnyfluff Member

    for replying and helping me understand.

    lichu3 I did check out the other post, and that was some very good info. It seems like SSI is more leinient in their Dx than what the CDC has come up with.

    I looked into my *functional disability* in a CFS book I have, and right now I am at the lowest points, "severe", by the standards that are set. No sure how you *prove* you are not doing your laundry, but I do pay a cleaning lady.

    thanks again.
  11. Kellyslaw

    Kellyslaw New Member

    Sorry it took me so long to reply. I have not been feeling well, like all of us. I recently returned to work and I am having a difficult time. Thank you for your apology. You made me feel so much better. I didn't intend to be argumentative. I just wanted to help. I too thought I had EBV because my older sister has it. Only, I found out from my blood tests and my doctor that I truly do have FMS and CFS.

    I hope you are well, and again, Thank you.

    Hugs,
    Kelly
  12. bunnyfluff

    bunnyfluff Member

    I don't just have a "positive" #. Mine are outrageously high, and have been for 6 months steady- a *true* definition of what they call "chronic EBV". It's not just maybe. sort of. I'm really sick with it.

    My immune system is so out of whack it allows reactivation, but in a way most people don't experience. Th-1/Th-2 are out of balance......I think the way mine reads is low Th-1. So, I never catch a cold, but my body allows EBV to remain reactivated.