Discussions By Condition: I cannot get a diagnosis.

1 year post mononucleosis diagnosis, lots of symptoms

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: Anonymous
  • January 16, 2011
  • 02:21 AM

Hi,
I am male, 23 years old, and I was diagnosed with mononucleosis 13 months ago after a very severe sore throat (no fatigue problems during the time of initial diagnosis). I am a very serious long distance runner (mostly marathons and 50 miles) , so I initially took about 25 days off my training and resumed on January 1st, 2010. Before I got sick, I was in easily the best running shape I'd ever been in and was incredibly energetic all the time. Not only was I running an average of about 2 hours a day. Sounds kind of over the top, but I absolutely love to be out in the mountains here in UT and running is my way of exploring the backcountry, not to mention the kind of shape it gets you into for racing when you train at that kind of volume.

In any case, I took about 25 days off and when I started back up on January, I felt slightly out of shape, but quickly got back into it by smartly starting at 3 miles every other day (very very light by my standards). By March, I ran a half marathon distance tempo run in training and broke my personal best time and also had a good solid 8 hour 50 mile trainer in the mountains that went well.

However, in April, things started to go awry. I was training very smartly with a coach and my fitness had seemed to be even better than it had previously been by March, but my body absolutely fell apart in another half marathon race in April trying to maintain my typical pace and when I went out for a 2 1/2 hour run with my coach around the same time (very fast dude on the trails, but 43 years old), I started to notice myself fading a lot more quickly than normal and couldn't keep up with him, while I previously had no problem running with him for a few hours. In May, I noticed a lack of speed for much of the month, but figured it was just a rough patch in my training and kind of ignored it. However, when I took a VO2 max and metabolic test later in the month, it was revealed that while my VO2 max had increased significantly from when I had last been tested a year before, my ability to metabolize fat (something usually built up by lots of long distance running) had decreased by something like 75%. The trainer running the test suggested that I had some sort of illness, but I didn't feel sick, so I didn't know what to think. When I raced a marathon a few days later, it was confirmed that something was really starting to go wrong. I had run this same race a year before and nearly won the whole thing, ending up swapping a couple places to end up in 3rd over the last 2 miles. However, this year, by mile 1, I knew my body was off, I was struggling after about 15 minutes, and by mile 7, I was very dizzy, 30 seconds per mile off my typical pace, and had a very high heart rate for a marathon (more like a 5K effort level), so I dropped out at about the 1/4-way point.

I felt better a couple days after that marathon and was already registered for a big 100 mile race in June, so I just decided to go ahead and see what happened. I had a really rough day and was way off pace the whole time, but part of 100s is just pushing through to the finish when everything hurts, so I just kept going. However, at mile 85, I passed out for about 7 hours (no medical reason beyond exhaustion, ie all my electrolytes, fueling, and fluids were spot on) and woke up feeling like my entire body was on fire. I was literally screaming in pain (not normal after any amount of running) and just sitting there shaking for a few hours. When trying to drive home the next day, I realized I couldn't easily stay awake for more than about 3 hours at a time (yes, that was a long time to run, but I've done it numerous times before without problem, so this is very abnormal for me), so my girlfriend had to take a bus out about 6 hours to pick me up and drive me home in my car.

One other important note about the above race: fat metabolism was clearly WAAAAY off; I was having to eat 100 calories a mile to sustain myself, normally, I'd need like 25-30 or so.

In any case, I decided to take some time off after that when I started to notice my body feeling incredibly run down. My doctors had previously said that mono doesn't relapse, so I believed them and just kept on trucking until my body literally crumbled beneath me in that race. I tried to run a couple times after that, but things were very very off, so I quickly nipped that in the bud and decided to take a couple months off when a new sports MD suggested I had never fully recovered from mono (despite me being in better shape than before several months after the diagnosis).

My symptoms included crashing very badly energy-wise when hungry, a feeling of discomfort and fatigue throughout my entire body (especially my ocular muscles), frequent headaches, and, especially brought on by hunger, occasional tingling in the hands, and blurred vision. I was tested for a number of things to make sure nothing else was going on, but everything came back negative (toxoplasmosis, HIV, diabetes, Lyme's Disease, kidney function, iron levels, red blood cell count, vitamin D, general bloodwork, etc, even an Epstein Barr viral load, which cost me about $300 out of pocket, since my insurance wouldn't cover it). Everything was normal, except Vitamin D, which was a bit low, but supplementing it back to the middle of the normal range didn't help. My EBV viral load showed the virus was present (expected), but not elevated enough to quantify it.

In any case, I took 3 or 4 months off running and basically all physical activity and my symptoms started to improve (never quite 100%), but my doctor encouraged me to try to start running again in October, so I did. I never felt normal, but over a few week span, I upped my running to a final week of 4 days on (90, 60, 80, and 150 minutes). The 150 was more than I should've done and it left me substantially more sick for a few weeks. I started skiing for the season in November and felt pretty good, like I was recovering again, but I overdid it a bit in December and started to feel run down again, so I have done nothing physical for the 3-4 weeks again now.

My doctor decided to try an experimental valacyclovir treatment, assuming mono is still the culprit (based on a bunch of research papers I'd read showing that it could potentially aid with the recovery and that, in small doses, it doesn't have any overly serious side effects), so I've been taking that for about 25 days now, without noticing any real help from it.

In any case, I've noticed a new symptom in the last week: I smell strongly of ammonia. Yes, I shower everyday. I first thought it was a sort of burning smell, but my girlfriend commented that it smells like chlorine or ammonia and I think her description is more accurate.

I've had some off and on digestive issues throughout this whole thing, but I feel that my stomach has never been particularly strong and digestive irregularity is something I've dealt with for a couple years off and on (really never all that serious, I've always attributed it to a slightly imperfect diet), so I considered it unrelated.\

Does anyone have any idea of anything else to test? To reiterate, all my symptoms include:
1. General malaise, sometimes in conjunction with or worsened by hunger, but not always the case.
2. Muscular fatigue (not necessarily sleepy/drowsy fatigue usually), especially brought on by hunger.
3. Massive decrease in fat metabolism despite the type of running training that should dramatically improve fat metabolism and other factors indicating improved fitness just prior to this.
4. Occasional blurred vision and fatigued feeling ocular muscles (ocular muscles fatigue prior to blurred vision).
5. Used to be capable of running a mid 6:00/mile pace for many hours and have even been capable of running at 80%+ heart rate max for over 9 hours, but as of 3 months ago, one single 2 1/2 hour run at about 75% heart rate max destroyed me for several weeks.
6.
7. Occasional tingling of extremities, always in conjunction with other symptoms.
8. Headaches, usually associated with the ocular muscular fatigue and/or blurred vision.
9. Migraines do run in both sides of my family and they could explain the headaches/ocular irregularities, but I have no idea how they could cause an general malaise for several weeks after what was apparently an overexertion in my current condition.
10. Have gained approximately 25 pounds in the last few months, though this is potentially expected as a result of my sudden drop off in physical activity. For the first 15 or so, I wasn't really watching what I was eating, although for the last 10, I've been significantly more careful about my diet and trying to eat healthy, so when I didn't weigh myself between late November/late December and noticed an additional 10 pound gain, I was pretty surprised.
11. Very strong smell of ammonia on my body, not neurological, as at least one other person has noticed it (yes, kidneys are fine as of a couple months ago).

I've already been under the assumption that this is just a result of never fixing the initial mono and relapsing badly in June (the point when my symptoms really got bad). If no further ideas are presented, I'm very content at this point to just sit and wait it out, but I'm a little concerned that maybe we should be looking for something else at this point.

Sorry that was so long, just wanted to put an accurate history...

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