Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Saturday, August 19, 2017

My Ongoing Battle With Chronic Epstein Bar Virus

As I wrote in April, I had (at that time) two recent blood tests showing active (IgM) positive Epstein Bar Virus (EBV) infection.  EBV is the virus responsible for infectious mononucleosis.

After my April post, one of my doctors (Dr. C) expressed some doubt about whether the EBV tests were correct.  Perhaps, he said, the tests were false positives.  He claimed that the lab that conducted the tests (one of the two large corporate labs in the U.S.) was known for false positive EBV tests on occasion.  So I continued to take transfer factor as I mentioned in April, but my heart wasn't fully invested in the treatment because of Dr. C's doubt.  When the bottle of Transfer Factor ran out, I stopped taking it.

In July, my other doctor (Dr. M) ordered a third EBV test in 2017, this time using a different lab (the other large corporate lab.)  The test came back positive again, with very high titers.  For me, this removed any doubt that EBV is a factor in my illness--at least it is now.  I've had, at this point, active EBV infection or at least 8 months, and likely more.  January was the first time we'd tested EBV in several years at least.  It is probably unlikely the EBV reactivated just before the first test in January.

My plan is to resume Transfer Factor and continue with Equilibrant and Valacyclovir.   But honestly, I don't think that will be enough to dig me out of this cycle of reactivated herpes family viruses.  It hasn't so far.

For years I've had my eye on IVIG as a treatment.   The few patients I've known who qualified for insurance coverage of IVIG had remarkable results.  More than once, I've heard these patients say something to the effect of, "you forget how much it's helping until you stop the treatment."  These informal reviews, combined with my belief about immunodeficiency being at the root of my ME, leads me to believe IVIG has a good chance of being effective.  The problem has always been that I don't qualify for insurance coverage of IVIG treatment because, as I've been given to understand, one must be deficient in two of the four subclasses of gamma globulins to qualify.  I am only low in one subclass.

Recently a fellow patient mentioned that there are other ways to qualify for IVIG.  One is with chronic EBV.  I haven't been able to confirm that this is true online.  I plan to discuss IVIG with my doctor at my next visit in mid-September and push hard for an IVIG prescription based on chronic EBV.  I have also been told that there is a related therapy where one can self-administer weekly shots of inter-muscular gamma globulin.  This is supposedly much less expensive (perhaps even affordable without insurance coverage.)  If I cannot qualify for IVIG, I plan to try this treatment.

In the meantime, I have a new symptom: abdominal tenderness.  I visited a physician's assistant a few weeks ago and she felt my abdomen.  She said that the area under my rib-cage (left side, front) felt firm and swollen.  She said this is the area of the pancreas and spleen "which can become swollen when someone has Mono."  I hadn't mention the positive EBV tests to her.  I said, "well, actually..."

So the quest to find some truly effective treatment continues.  I know it's unlikely at this point that I'm going to find something which drastically changes my health for the better, but I'm going to keep trying new treatments from time to time... if not for any other reason than to keep hope alive.


  1. Hi There,

    I remember commenting on IVIG a few years ago on your blog. I was able to receive insurance coverage as I was diagnosed with CVID (common variable immunodeficiency), and it did indeed change my life. I thought I had chronic fatigue syndrome but was fortunately properly diagnosed with CVID (not to diminish the reality of CFS, it just wasn't the proper diagnosis for me).

    Is your overall IgG in the normal range? If it is not, that would be helpful for coverage. The other thing to look into would be your vaccine responsiveness. Getting a pneumococcal vaccine along with pre and post 'Streptococcus pneumoniae IgG Antibodies, 23 Serotypes, Serum' panel (I believe that is what they used, but I would highly recommend finding a immunologist who actually administers IVIG in their office as most immunologists and doctors are pretty clueless about this). If you show a flat or minimal response to vaccine, this could also assist with insurance coverage. There are some other vaccines they use as well as some patients may respond to polysaccharide vaccines but not protein vaccines, etc.

    My understanding is that the IM is far less effective than IVIG, but would be better than nothing!

    If you would like any further information, please indicate this in your reply. I have been doing IVIG for about 4 years every 3 weeks so have learned a lot about navigating it!

    Good luck, I hope you can figure out how to give it a shot!

    1. Thank you! My overall IGG levels are within range, I'm just low in certain subclasses. I think I do recall your previous comment(s) about IVIG now that you mentioned it. There were so many avenues to pursue at the time, but now I feel I these positive EBV IgM tests have focused me a lot more on IVIG.

      I will no doubt have more questions for you when I speak to my doctor next and get her take. Thank you very much.

  2. Forgive me but I haven't read all of your posts on the EBV journey, but if a current infection is definite at this point, why would you not also consider in your set of options trying the appropriate antiviral like Famvir, etc? I don't know that you'd have to bring out the big guns like Valcyte, but you could start with the ones that have shown some efficacy against EBV? Regardless sending you all the best for healing.

    1. Sparrow Hawk, thanks for bringing this to my attention. I realize now that I forgot to mention my ongoing Valacyclovir treatment. I'm going to edit the post to reflect that now. Your post, however, lead me to research antiviral treatment for EBV again since I hadn't looked into that in a long time and the information I found suggested that my current dosage of 1G 2x/day may not be enough. Dr. Learner apparently recommends (or at least was recommending as of 2011) a dosage of 1G FOUR x per day (not two.)

      Thank you for the well-wishes and I wish you the same.