Progress Report: January 2016

Last year was a difficult one overall for me. I ended up changing doctors in February because I hadn’t seen any tangible improvement in my symptoms and I was continuing to lose weight at a fairly rapid clip. By springtime, I was down to a somewhat horrifying 125 lbs. (I’m 5'11"), nauseous all the time, and reaching a point of certain desperation. My previous doctor openly admitted that she didn’t know what else to do for me, so I moved on. A year of treatment without any improvement wasn’t acceptable to me and I was determined to make 2015 better than 2014.

While I wouldn’t say I’m doing great by any stretch of the imagination, and I still get down on myself on particularly bad days, I find it helpful to look back and take a full accounting on where I am now vs. where I was a year ago.

What’s Better

• My Weight — At the end of 2015, I weighed 142 lbs. That’s the most I’ve weighed in at least five years, and almost as much as I weighed when I first moved to California nine years ago (about 145 lbs.). My average was around 135 lbs. for 2010–2014, so that’s a huge improvement. What’s more exciting (for me) is that I seem to still be steadily gaining about half a pound each week. The time I felt my healthiest was when I was at 165 lbs., so I’m hoping to continue heading in that direction.
• My Appetite — My mom was the first to point out that I’m eating a lot more than I used to. Previously, even when I wasn’t nauseous, I didn’t have much of an appetite. I never felt ravenously hungry and my stomach never growled in hunger. I could forgot to eat sometimes, and I’d only remember when I started feeling sick. But it wouldn’t be normal hunger pains, it would be feeling dizzy, or more weak than usual. I’d completely skip over the normal hunger reaction. Now, I’m hungry a lot, and my meals can be measured in pounds of food rather than pieces. Of course, appetite and weight gain go hand-in-hand, but considering that I used to be unable to gain weight even when force-feeding myself an extra 1000 calories a day, this is significant.
• My Complexion — This another that mom points out. I don’t really look sick anymore (even though how I feel is a different story). I might look tired on any given day, but the weight gain has filled out my face a bit, my eyes are brighter and more focused, and my skin tone is much healthier (no more yellowish/grayish tinge).
• My Symptoms — For the most part, I’m no longer dealing with daily nausea, body aches and pains, headaches, and the general flu-like symptoms that I had acquired over the years. So I’d say the worst of the physical symptoms have subsided considerably.

What’s not Better

• Fatigue — My fatigue is just as bad as it’s been for the past year, and on some days, it feels worse. The doctor, plus some other Lyme patients I’ve spoken with, have said that the fatigue is often the last symptom to go. That doesn’t make me feel any better considering that I’ve barely been able to leave my house for the past two years. There are still some days where the most I can do is lie on the couch and watch TV or listen to podcasts, and that’s pretty frustrating.
• Brain Fog — This is likely tied to the fatigue but my inability to think clearly is still a major issue. I have a lot of trouble concentrating on things, and my brain has a tendency to just give up on any nontrivial problem I encounter. That can make doing my coding and writing quite difficult, and also makes it difficult to have conversations sometimes. When I’m having particularly bad brain fog, I tend to withdraw from all forms of communication for fear of getting overly frustrated and saying the wrong thing (it becomes easy for me to misunderstand or read negative intentions into things as my brain acts like fight-or-flight).

I feel confident saying that if I could get these two symptoms under control, I’d be pretty close to “healthy.”

Next Steps

I’ve been slowly increasing all of the various supplements the doctor has given me for my different infections. I’m only on one drop per day of Samento, so I’m looking forward to increasing that over the year and hoping that it will result in some improvement of those last two symptoms.

I’m scheduled for some followup testing, both Autonomic Response Testing (ART) and blood testing, so I’ll be interested to see how those turn out relative to my previous testing.

I’m hopeful that 2016 will bring some more dramatic improvements to my health. I’d really like to get back to the office for work, and be able to attend some social gatherings. In 2015 I missed both attending the Super Bowl with my family and a special screening of Star Wars for my company, and I’d like very much not to repeat that this year for other events.