Epstein Barr vs. Cytomegalovirus...Anyone else had BOTH??

Discussion in 'Fibromyalgia Main Forum' started by TerryS, Sep 19, 2006.

  1. TerryS

    TerryS Member

    Well, just when you think you have everything figured out, BAMM!

    I JUST found out tonight (and confirmed it on many different sites) that Epstein Barr Virus and Cytomegalovirus are TWO DIFFERENT VIRUSES!

    I had Cytomegalovirus in 2002 which caused an acute illness in me (it supposedly will only cause acute illness in "immuno-compromised" people...I don't know what that means for ME!).

    Anyhow, at the time of this crash, I tested positive for an "active infection" of Epstein Barr, and it also showed it as being "chronic/reactivated".

    I went around thinking that the "reactivated" part was due to my previous Cytomegalovirus. Now it appears that I actually have ALSO had Epstein Barr in the past (probably last summer when I felt like crap) and now another active recurrence!!!

    I'll bet I have better odds of winner the lottery than getting hit with both of these!

    Anyone else in the million $$$ dollar club with me???

  2. PVLady

    PVLady New Member

    I don't know much about these viruses but I recently tested positive for Epstein Barr they say is "old". The infectious disease specialist is now testing for a number of other viruses including cytomegalovirus.

    I posted yesterday the list of other viruses he is testing for if you check my posts.
  3. TerryS

    TerryS Member

    PV - I HOPE you don't have that darn CMV. It's a doozy. I was healthy prior to then and ran a fever 27 days straight. Took several months to really regain my strength (at least enough of it to give it all to my employer and have none left for me!)

    Jill - I certainly understand about having the mono and then everything going you know where.

    I guess I've now joined the club of EBVer's, CMVers, rheumatic fever(er)s, and reactive arthritisers!!! If my ENT and neurologist are correct, the EBV is chronic/persistent...no wonder I feel like pooh most of the time!

  4. rigby

    rigby New Member

    When I was dx with CFS hey tested me for all these viruses I have CMV, HHV6, and epstein barr they stopped after this. Was just in the hospital with MRSA in my blood no idea where I got this bactria. Sharon
  5. TerryS

    TerryS Member

    Cat - HOLY COW!!! Are you sure you're going to able to go back to work? Do you work full time?

    Rigby - How long ago were you diagnosed with CFS? Are you still working?

  6. auburn43

    auburn43 New Member

    Dear Terry,

    I feel for you. when I had my test. I had high titers

    to Epstein Barr, cytomegalovirus(sp) and HHV-6.

    for ten years I complained of diabliling "Flu" like

    symptoms. Until a friend told me that I looked

    quite ill and thought of CFS, wasn't able to get my

    PCP to perofm the blood test. Finally, finding a specialist

    in CFIDS, Fibro, and MCS, I was given tests and came up

    tails. on all 3 viruses. It semms that I could have

    contracted them after a major bone surgery where I likely

    had a transfusion in 1990. Even at that time, our health

    care system wasn't that good about filtering blood.

    The universal shift to high levels of filtering didn't

    really occur until 1997/98.

    More testing for other CFIDS realted disorders, and

    I just kept cdoming up tail.

    I wish you the best Terry. If you have links to

    information about how these viruse, left untreated

    damage the whole body or specific parts, I would love to

    know about them.

    Best to all_auburn43
  7. TerryS

    TerryS Member

    I'm a little confused about your post. What do you mean "coming up tail"? Do you mean that they haven't diagnosed you?

    I thought they could diagnose CFS with the symptoms and by ruling out the disorders that they can test for like lupus, etc.

    Just got back from my teenaged daughter's PCP. SHE HAS MONO. I tested positive for active/chronic/reactivated infection back first of August, so apparently she contracted this from me.

    He (the PCP) told me that if you don't take care of yourself and rest that CMV and Epstein Barr can reactivate and become chronic like what has happened to me right now. He said that our family must have a genetic defect that allows us to contract these things and get so ill from them.

  8. Shannonsparkles

    Shannonsparkles New Member

    Wish I didn't!
    ((hugs)) Shannon
  9. STML

    STML New Member

    just wondering what your doctor did for CMV, I'm from england and my gp isn't really interested they just say oh its normal to carry CMV, loads do, etc, i.e. i'm treated a s normal person but you just know you'd feel better if they calmed it down, you can't totally get rid of it I know that, were you given anti-virals, etc?,
  10. TerryS

    TerryS Member

    Shannon - Sorry to hear that you also have had both!!!

    STML - Nothing can be nothing for CMV (at least that's what my infectious disease doc told me). Just had to ride it out. Never fully recovered from that thing. Been excessively tired and fatigued since. This past year has been the worst...wondering if I had reactivation back and forth all year of the Epstein Barr, since that's what we know I have right now.

    Found out yesterday that my teenage daughter has contracted mono from me!!! She's not real pleased about missing school and boyfriend! Also, think that my 24-year-old daughter may have contracted it, as well as my son who just left for college a month ago. My son went to the clinic yesterday and they told him to come back in a week if he's not better and they'll do the mono test. My eldest daughter is going to her university clinic today and get a mono spot test.


  11. Kimba4318

    Kimba4318 New Member

    Yes - I have both and was just blown off... rest, etc. No antivirals prescribed or suggested vitamins or anything.

    Should I be getting some sort of treatment do you think?

    Good luck to you
  12. TerryS

    TerryS Member

    The docs do tend to just blow them off. I think that's because most people contract them in their lifetime but do not become ill from them. In the few who do become ill, it is usually self limiting and resolves within a few weeks max. Problem with me is, it apparently wants to keep reactivating and makes me ill. I've read that it can reactivate but that you normally wouldn't show symptoms...but I guess WE ARE NOT NORMAL PEOPLE!!!

    My teenage daughter just got diagnosed with mono yesterday. Her doc told me that we (meaning my kids and I) must have a genetic defect in that we are so susceptible to these things. (We suspect my two other children also may have mono in the last week, but they seem to have milder symptoms than my youngest who is very ill right now).

    Good luck, Kimba!!! The best treatment you can get, I think, is just to REST!

  13. wishingonastar

    wishingonastar New Member

    My treatment for EBV has included a very high dose of anti-virals for 1 year, then the natural anti-viral Cumanda. They worked and I thought they might help you.

  14. TerryS

    TerryS Member

    I'm going to see an infectious disease doc next week 'cause my PCP and rheumy just shrug their shoulders and say they don't know about the EBV or if it means anything. (My ENT and neuro, however, felt it did mean something).

    Anyhow, we'll see what the ID doc thinks. He should be the "expert" at interpreting this. I'll try to remember to ask him about the anti-virals.


  15. BMW

    BMW Member

    I was diagnosed with Epstein-Barr virus many years ago and stayed half sick all the time. A pharmacist (whose son had EBV also) pointed me to a doctor who treated EBV; however he had retired, but referred his patients to an allergy/NAET doctor. Allergy shots helped, but I still had flare-ups of EBV and was still feeling run down and sick. Trying not to cry, I asked him if there was anything else he or I could do. He then tested me for chemicals, metals, etc. and started me on "remedy" drops. It wasn't long before I started feeling GOOD, and stopped getting sick a lot. I have been taking allergy shots and the drops (daily) for several years, and RARELY get sick anymore. I sleep better, too. Wish I could say 100% better, but 85 - 90% would be more accurate.
    Hope you can find a doctor who practices NAET (can't remember what it stands for, but will find out and let you know). BMW
    [This Message was Edited on 09/23/2006]
  16. puffy1

    puffy1 New Member

    I was tested for EBV back in 87 I was diagnosed with mono but when I didn't seem to get any better my doc sent me to Davis medical center for more testing.

    The test showed that I probably had a past EBV infection. I was never treated for it I found out recentely that I had Mono in high school.

    I don't remember having it but both my sister and my best friend say they remember me having it?? I remember having something but was told it was three day measeals but I was sick for problly 2 weeks at that time.

    I have never heard of this other virus though what is the test they do for that do you know? I can look through my medical recodes and see if I was tested.
  17. TerryS

    TerryS Member

    BMW - Is an NAET doc a naturopath perhaps??? Do you know what these "drops" are that you take?

    Puffy - The cytomegalovirus (and Epstein Barr) apparently are viruses that pretty much everyone gets exposed to and actually contract during their life. From what I understand, most people don't get very ill from either one; as a matter of fact, they usually never even know they've had it. The cytomegalovirus (I think) is one that hardly ANYONE ever gets ill from. I was very, very ill with mine for 6 weeks and took several months to recover from.

    They have to do blood cultures to confirm the CMV...so, not something you want to pay for unless you think you actually have an active virus at the time. The infectious disease doc knew what I had right away and confirmed with the blood cultures. I live in Atlanta, and he told me that he only sees about two cases a YEAR!

  18. Chootik

    Chootik New Member

    What is your "Remedy Drops" that you are using?

    Obviously it's something organic (not meds) so it would be great to find out what it is.

  19. Texas Jackie

    Texas Jackie New Member

    Yes, I have both plus HHV6. My family practice doc said nothing could be done for them, but I happen to be in a medication study with a FFC doctor and he said that wasn't true. I wasn't going to the FFC, couldn't afford them then or now.
    [This Message was Edited on 10/04/2006]
  20. PVLady

    PVLady New Member

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