Dr. C prefers to treat ME primarily with oxymatrine, and secondarily, he prescribes various anti-viral prescriptions. Lately, he's been prescribing the anti-viral drug Viread (tenofovir). He states that about 1/3 of his ME patients who try Viread have experienced improvements. In a few cases, the Viread patients have achieved remissions, but this is the exception.
Viread was developed and approved to treat hepatitis B and HIV. Prescribing it to ME patients is an off-label use. It can be toxic to the liver if used for years, and so Dr. C insists on regular kidney function tests for those who are going to try it.
I agreed to try it.
Unfortunately, however, I didn't think through my plans during my appointment, otherwise I would have suggested I delay taking Viread. I recently started taking a fairly high dose of Valacyclovir to deal with chronic Epstein Barr Virus (EBV) -- 1G 3x/day. At this time, I don't want to add another drug that could tax the liver and/or kidneys at the same time. The higher dose of Valacyclovir is supposed to last 3 months, at which time I'm supposed to return to a maintenance dose. My plan now is to start Viread after I go back to the maintenance dose of Valacyclovir.
Lab Results and Pancreatitis
Yesterday I received the results of another set of blood tests given last week. Yet again, my IgM antibodies for EBV were very high (about 6 times more than the upper limit of the reference range.) IgG antibodies were of course very high as well. This marks the 4th such positive test dating back to January.
The blood sample was given within a week or two of starting the increased dose of Valacyclovir, so I'm still hopeful that the Valacyclovir will help bring this condition under control. It is really starting to worry me. Chronic EBV infections can lead to cancer and organ failure, among other serious health problems. I need to find an effective treatment. Health-wise, I'm still able to bring myself into work each day, but I have no energy for anything else.
In the last week of July, I came down with pancreatitis (inflammation of the pancreas), which is probably related to the chronic EBV infection. I've told both of my ME doctors, Dr. C and Dr. M, about this but they didn't seem too concerned. Dr. C palpated the area and didn't say much about it other than it's a common symptom for people with ME and he's surprised it took this long (about 6 years) for me to develop this symptom.
Today after a particularly fatty lunch, the pain in my pancreas (and to a lesser extent, through my abdomen) got much worse. I decided to see my GP about it and perhaps ask for some imaging. This is probably unlikely to lead to any helpful treatments, but I want to rule out any serious problems. Most likely, this will end up being just another symptom that gets added to my rotating list of ailments.