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  • Diagnosis changed to CFS

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    Old 04-20-2005, 08:41 AM   #1
    tlphil
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    Diagnosis changed to CFS

    I had previously posted in the general immune disorder section. I had some blood work done back in June 2004 and was asked if I was ever told I had CMV (I had never even heard of it). They then did a mono spot test. The results of all tests are:

    CMV IGG Antibody .... 3.79 (Abnormal)
    CMV IGM Antibody ..... 0.28 (Normal)
    Epstien Barr IGM .... 0.32 (Normal)
    Epstein Barr IGG ..... >7.00 (Abnormal)
    Epstien Barr Antigen .. >5.00 (Abnormal)

    Basically at the time I was told I had had both viruses, but they were not 'current' cases, but it did explain what I was feeling.

    I started taking Valtrex, it made me feel worse (since then I read on the other post that that was a good thing). I had stopped taking it. Saw a doctor in the practice that had more experience in this 'dual virus thingy'.
    He ordered blood work again and started me on Famvir. Those test results are as follows (these done in Feb 2005)

    CMV IGG Antibody .... 3.98 (Abnormal)
    CMV IGM Antibody .... 0.32 (Normal)
    SED Rate ..... 27 (Abnormal)
    ANA Screen ............ Negative
    EBV IGM ................. 0.09 (Normal)
    EBV IGG .................. 5.08 (Abnormal)
    EBV Antigen >5.00

    With those results, he increased the level of Famvir to 1000 mg 2x day. Then ordered me back for tests again in 6 weeks.

    Tests done on April 6 (by a different Lab so the read out is very different)
    Results are:
    EBV, Chronic/Active infection
    EBV Early Antigen AB, IGG............. Positive
    'positive results suggest recent or chronic-active infection. Anti-EA becomes undetectable weeks to months after onset.'
    EBV Ab VCA, IgG ...........................>170
    EBV Nuclear Antigen Ab, IgG ........ >200

    CMV
    CMV Ab, IgG ..............................22.9

    At this result he said "I have never seen counts so high." And 'hopefully because you are so high, it will burn itself out quickly."

    Both times when the antiviral was increased I became sick with cold like symptoms. He doesnt think they are related. Now though I feel much better, although still bouts of weakness. He also started me on Effexor HR and slowly increasing the dosage of that. I go back to see him again in May, though there is no order for any more blood work. I noticed at the end of my sheet it said DX...Chronic Fatigue Syndrome...He never actually told me that.

    Anyway...are these common problems and blood results? Are there any other tests I should suggest?

    Thanks y'all.
    Tracey

     
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    Old 04-20-2005, 09:23 AM   #2
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    Re: Diagnosis changed to CFS

    Quote:
    Originally Posted by tlphil
    I had previously posted in the general immune disorder section. I had some blood work done back in June 2004 and was asked if I was ever told I had CMV (I had never even heard of it). They then did a mono spot test. The results of all tests are:

    CMV IGG Antibody .... 3.79 (Abnormal)
    CMV IGM Antibody ..... 0.28 (Normal)
    Epstien Barr IGM .... 0.32 (Normal)
    Epstein Barr IGG ..... >7.00 (Abnormal)
    Epstien Barr Antigen .. >5.00 (Abnormal)

    Basically at the time I was told I had had both viruses, but they were not 'current' cases, but it did explain what I was feeling.

    I started taking Valtrex, it made me feel worse (since then I read on the other post that that was a good thing). I had stopped taking it. Saw a doctor in the practice that had more experience in this 'dual virus thingy'.
    He ordered blood work again and started me on Famvir. Those test results are as follows (these done in Feb 2005)

    CMV IGG Antibody .... 3.98 (Abnormal)
    CMV IGM Antibody .... 0.32 (Normal)
    SED Rate ..... 27 (Abnormal)
    ANA Screen ............ Negative
    EBV IGM ................. 0.09 (Normal)
    EBV IGG .................. 5.08 (Abnormal)
    EBV Antigen >5.00

    With those results, he increased the level of Famvir to 1000 mg 2x day. Then ordered me back for tests again in 6 weeks.

    Tests done on April 6 (by a different Lab so the read out is very different)
    Results are:
    EBV, Chronic/Active infection
    EBV Early Antigen AB, IGG............. Positive
    'positive results suggest recent or chronic-active infection. Anti-EA becomes undetectable weeks to months after onset.'
    EBV Ab VCA, IgG ...........................>170
    EBV Nuclear Antigen Ab, IgG ........ >200

    CMV
    CMV Ab, IgG ..............................22.9

    At this result he said "I have never seen counts so high." And 'hopefully because you are so high, it will burn itself out quickly."

    Both times when the antiviral was increased I became sick with cold like symptoms. He doesnt think they are related. Now though I feel much better, although still bouts of weakness. He also started me on Effexor HR and slowly increasing the dosage of that. I go back to see him again in May, though there is no order for any more blood work. I noticed at the end of my sheet it said DX...Chronic Fatigue Syndrome...He never actually told me that.

    Anyway...are these common problems and blood results? Are there any other tests I should suggest?

    Thanks y'all.
    Tracey
    Tracey, I can't say that I'm surprised at all by your EBV and CMV lab values. If you are having Chronic Fatigue Syndrome (CFS) symptoms then these viruses may have been the causitive factor. It not uncommon at all for many CFS patients to display something like this because an initial infection of some sort usually sets the whole thing in motion.

    However, I think maybe your doctor could be a little quick on the draw to diagnose you with CFS. What makes me say that is it doesn't appear these viruses have quite burned themselves out yet because your Sed Rate is very elevated which can indicate an active infection of some sort. In most if not all CFS patients, the Sed Rate is normally very close to zero!

    I believe that you should ask your doctor about continuing the anti-virals even though they make you ill because this step could be critical in what comes after it. Also, I want to suggest that you maybe even add Acetyl L-Carnitine to your therapy. Its an over the counter supplement you can find almost anywhere and it supposidly has shown some potent anti-viral activity and is tolerated better. In fact, it is probably the most tested supplement for CFS and one of the only ones that actually show any benefit in relieving symptoms. Please let me know your thoughts on this.

     
    Old 04-20-2005, 04:22 PM   #3
    tlphil
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    Re: Diagnosis changed to CFS

    Iamotta

    Thanks for all the info. I am going to look for Acetyl L-Carnitine. Is it ok to take it with the antiviral?

    The doctor said pretty much that this is all that could be done orally. He wasn't concerned too much about the SED rate, he said that they become concerned when its close to 90.

    I am feeling better today than I did last for the last week or so.

    Thanks again
    Tracey

     
    Old 04-20-2005, 10:12 PM   #4
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    Re: Diagnosis changed to CFS

    Yes, I believe that taking Acetyl L-Carnitine with antivirals is completely safe but you may want to check with your doctor first though to be sure. Another product I should mention are Fish Oil capsules...there is also a fair amount of research on them to suggest they may aid in relieving symptoms and they should be safe as well.

     
    Old 12-03-2007, 10:58 AM   #5
    kickstar1
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    Re: Diagnosis changed to CFS

    Hi,

    I have a similar question. I had the EBV blood test done as well and all of my Antibodies (EA Ab, Ab VCA, Nuclear Antigen Ab) were off the charts (my EBNA is high because I got EBV like 10 years ago so the question is if it was re-activated); they didn't do any Ig M count though. So, I am kind of confused on what it means. Also, I am going to have my tests re-done so which number should I look for in order to know if the EBV infection is going down?

     
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