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.