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

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

Monday, October 30, 2017

Gut issues went from 3 to 10

I visited my GP last week about something unrelated to my gut, but I happened to mention my ongoing problem with tenderness throughout my abdomen.  As I wrote about before, the physician's assistant (PA) who initially diagnosed it said that the cause of the discomfort was likely the pancreas and/or spleen due to my ongoing Epstein Barr infection.  The pain and tenderness started in the last week of July and has been intermittent since.

My GP palpated the area where the pain is the worst (just under the bottom of my left rib cage) and she insisted that it is actually my stomach.  Thinking back a couple weeks earlier to a Dr. C appointment, he suggested the same thing but I didn't pay much attention.  And now, thinking about the pain and tenderness more, I'm fairly certain my GP and Dr. C are right -- it's the gut, not the pancreas.  (My reasons are too many to cover fully here, but one of the main ones is that, on bad days, the swelling and tenderness is all throughout my entire abdomen, from the bottom of the rib cage to the pelvis, both sides.)

For most of my life with ME/CFS (since 2011), gut disturbances have been pretty far down the list of severity of symptoms (notwithstanding the initial onset period).  That's not to say I didn't have gut problems, but I usually had more painful or debilitating symptoms that I had to deal with.  Now it seems the gut disturbances are the worst--maybe tied with the overall fatigue.

Right now, it almost feels like my entire abdomen could burst out of the skin.  The whole area feels swollen and bloated.  "Bodily functions" are a little off, but not in a way that seems to match the severity of the pressure I feel.  No loss of appetite.  I've now spoken with three doctors about this issue and none of them have anything useful to add or seem particularly concerned. (That's good I guess?)

My GP wrote a script for an acid-reducing medication but I don't feel that over-production of acid is remotely close to being the problem.  I didn't fill the prescription.  In the meantime, I've tried various diet alterations (although not in a very systematic way) and can't find any obvious cause in food. I might have wondered if there's a connection between the gut issues and my increased dose of Valacyclovir (3G/day), but the problems started months before the increased dose.   

I have an appointment with a gastroenterologist in the fourth week of November, and I am hoping to obtain some clarification from him.  Could this be just another strange symptom of ME/CFS that I have to live with until it mysteriously goes away?

In the mean time, in light of my ongoing positive Epstein Bar Virus (EBV) IgM tests, I went back and looked at my old lab results.  I knew that I had a positive test for EBV IgM (active infection) back in 2005, way before I got ME/CFS.   And I also thought I knew I had been thoroughly tested for EBV since falling ill with ME/CFS in 2011.  But when I looked back at my records of blood tests where EBV was tested post-diagnosis (twice in 2012, and once in 2013), I saw that the doctors only ordered tests for IgG antibodies.  My memory was only that IgG was positive, which led me to assume we'd also tested IgM and that was negative.  But actually, until this year, nobody ever tested my EBV IgM titers.  How could this oversight have happened?

So now I'm wondering if I've had positive IgM titers for EBV for a very long time.  I feel frustrated, but also a little hopeful that if I can somehow treat the EBV and bring IgM titers back in range, I might feel a little better.  So far though, that's not going so great.  I have an appointment with an infections disease specialist in two days.  I'm doubtful she will be of much help, but I'm going to give her a chance nonetheless.

Wednesday, October 4, 2017

Dr. C prescribes Viread

I had my latest appointment with Dr. C last week.  Dr. C is my ME specialist doctor, who I've written about under the Equilibrant Label in this blog.


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.