Getting Moving Again…and new meds!

Well, it’s been some time since I was able to even think about sitting down and blogging.  I just completed a long trudge through creating a US I course that required hours of written scripts that I then had to record.  Every spare minute not taking care of work or family was sunk into that project. (And now I have US II to go by November!  Acketh!)

But we’ve been back to the doctor, and we’re opening a new phase in our battle.  As I believe I mentioned, it’s been confirmed that I’m facing a chronic bartonella infection that seems to have taken up residence in my innards. The first round of anti-biotics helped notably for the first two-weeks, but then I seemed to relapse into more distinct pain and exhaustion. So, she’s shifted me off Minocycline (the least expensive one, of course) and added RifAMPin.

RifAMPin is used for tough, chronic bacterial infections, according to the net. While the usual “this will make you turn your skin inside out” reviews were to be found on places like WebMD, I was encouraged by what I saw on the various Lyme sites.  Quite a few people there spoke about it like it was a wonder drug. The big concerns for side effects in this case is liver damage, so I’ll be getting labs done after two weeks.

At the suggestion of a internet post (approved as a good idea by my doctor) I’ll be pairing this med with Milk Thistle to try to help my liver metabolize and cleanse it.

Two interesting points, perhaps.  First, I noticed that when I started the anti-biotics in the first place, within 24 hours my innards started working properly again. I remember thinking that is odd–isn’t it supposed to be the opposite with anti-biotics?  According to our doctor, apparently, people with bartonella are the exception. When it invades the intestines, it shuts things down, so when you start killing it off, it opens the door for things to work right again. (I’m also taking 200 billion pro-biotics a day to head off problems on the other extreme…)

The second point, if you happen to ever need to take RifAMPin, is that it colors your…liquids…red-orange. And by that I mean everything, apparently–including sweat and tears!  I’m not sure if this means a hard workout will stain my clothes or not.  Fall needs to get here quick!

Kami is also beginning a round of anti-biotics.  The doctor things that she is facing systemic infection that is causing overall inflammation. This is encouraging because she is the first doctor to have a clear indication of what might be going on with tests to back it up.  She says that if she’s reading the numbers right, Kami should experience some quick relief.

Here’s hoping and praying! There’s a good chance we both have some herxing in our future….


2013: “These things just sometimes happen, you see?”

Sign for the Augusta National Golf Club
Does anything say “Augusta” more clearly than the Masters?

If you recall, oh intrepid reader, when we last left off, it was  mid-March of 2013.  After nearly passing out at work, I was in an ambulance, heading to University Medical Center in downtown Augusta, my heart apparently going wild. And not in a good way.

While I was in the ambulance, I felt a little odd, but fine overall.  Apparently my level of calm was somewhat unnerving to the EMTs.  They weren’t used to my level of not-freaking-out.  I talked with them quietly and told a few jokes (dumb ones, like as not). It helped that I still had experienced no pain, just fatigue and that weird fluttering sensation in my chest, and so it was hard to “envision” a medical crisis.

I also felt very confident that, whatever happened, even if I died, it would not be outside God’s control or His plan. I knew this was a fact and that I would either conform my opinions to it or I would not. Just like 2+2 would always equal 4, God’s sovereignty would be true, whether I wanted to admit it or not. Don’t think this reflected some kind of credit to me; for some reason it thankfully came easily at that moment. I would have to wrestle with really understanding it for months afterward, with varying degrees of success.  As most people, I really still am.

My wife, Kami, and our daughter met me coming off the ambulance. It was good to see them, though I hoped they weren’t too worried.  Soon, my daughter was bundled off to her cousins’ house and Kami and I were ensconced in the emergency room.

It appeared that I was suffering from something called “atrial fibrillation” (afib), an electrical disorder of the heart where the top chambers get confused signals and start to quiver. The larger, lower chambers race to try to keep up.  At points, I saw my heart rate shooting over 180 beats per minute!  That isn’t sustainable, and, if allowed to continue, can eventually lead to heart failure.

Well, as stereotypical as it sounds, they said that an electric shock could knock me out of it and they could send me home that night.  We tried it. Twice.  They knocked me out, brought in the paddles, and…nothing. (I later learned that this particular operation could have killed me. In afib, clots can form in the heart and a shock like the one they gave me can dislodge them, causing, in effect, a do-it-yourself stroke. Thankfully, I hadn’t been in afib long enough to form any clots.)

I was given a chest x-ray and a doctor came in to tell me that my heart was swollen for reasons unknown.  He was admitting me to the cardiac intensive care unit to try to bring things under control. They put me on medication to bring my heart rate down, and waited for me to come out of afib while performing various tests.

It may well be a testimony to the amount of stress I had been under that these few days in the hospital were really more like a vacation. With the exception of waking me up at midnight and 4 am each night to take my vitals and “make sure you’re sleeping well” (!?!?) I was actually able to relax and rest. I still felt exhausted, but under the circumstances I can’t say that was surprising.  The food was decent, and the most annoying thing about it was that no one would let me get up and walk around on my own.

And here’s where it started getting really strange.

Usually, when things like this happen, there is a reason for it, and that reason is often quite plain. The doctors who examined me would cluck their tongues as they asked questions and you could see the conclusions forming in their minds.  And then the test results began to come rolling in.

The first was an echo cardiogram, which images the heart live using ultrasound. I was nervous, joking with the tech that “Oh!  That doesn’t sound good!” when she listened to my heart. She laughed and quickly pointed out that I had no idea what I was talking about. She was right.  The doctor came in and said that the test had shown no abnormalities whatsoever.

This was followed up the next day with a heart catheterization, where they shoved a probe directly into my heart via an artery. Again the doctor expected to find something.  Again, he found nothing.  He told my wife and my mother that what he saw on the screen was something he didn’t often get to see:  “a young, healthy heart” with clear arteries displaying plenty of branching.

Later that day, my heart kicked itself back into sinus rhythm.  I actually felt it happen. Suddenly something changed and I could think and see more clearly. I asked the nurse in the room and she confirmed it. My EKG continued to show a “suppressed Q wave” that I later learned was indicative of a “right bundle branch block.”  In short, there was a problem with the electrical conduction system taking signals from my brain to my heart, but apparently it wasn’t serious. (Of course, I’m just parroting smart things other people are saying. I really don’t understand it that well. Dammit Jim! I’m a doctor, not a physician!)

One thing that occurred to no one was the possibility of a recurrence of Lyme Disease.  It turns out, however, that the situation I had been experiencing had all the hallmarks of a classic case of “Lyme Carditis.” The Lyme bacteria and co-infections can inflame the pericardium, the protective sac around the heart, and sometimes even the heart muscle itself. It can interrupt the heart’s electrical system in a very serious way, leading to permanent damage. One doctor, Oncologist Neil Spector, suffered from untreated Lyme watched his heart degenerate to the point where he required a heart transplant! As the Lyme doctor currently treating me noted in our first interview, his story sounded exactly like mine. (With the happy exception that I’m now receiving treatment, apparently/hopefully before irreparable damage has been done.)

I was able to go home the next day. The experience had cost me (or at least the insurance company) better than $20,000, and I had discovered…nothing.  In fact, the doctor’s quote to me, as he was informing me of my discharge was, “Well, these things just sometimes happen, you see?”

They say that ignorance is bliss; I can attest to the fact that it isn’t. Not only is it a form of slow mental torture, it can also be simply dangerous. But more on that in my next post.