My journey through Lyme Disease- Healing my body and mind.

Goodbye Doxy Hello Flare

on May 8, 2013


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Well, I have been on Doxycycline for the past 3 months and it has been a wonder drug for me! My symptom list became so small and manageable that I was able to get out for multiple bike rides and socialize. Mentally, I really was feeling like me again. The down side was that I had a perpetual burn on my nose and hands from Doxycycline. I made every effort to cover my face with scarves and hats and even avoided the sun entirely on nice days (hard to do in rainy Bellingham), and I still had the burn. It’s not a normal sunburn. It’s really splotchy and never peels. It also actually burns. My hands burn so bad at night when I’m trying to go to sleep that they feel like they may spontaneously combust. Apparently, although Doxy makes skin SUPER sun sensitive, it can also cause chemical burns. I think I had a mix of both. Finally, I decided that since I was feeling good otherwise, and I had been on it for a while, it was time to go off of Doxy and give my poor skin a break. Happy Day!

Just 24 hours after stopping Doxy, the symptoms began to creep in. Yesterday began a pretty strong flare. In my opinion, it seems nearly impossible to have such a reaction to stopping antibiotics within just 24 hours. So, I can’t really say for sure what is causing the flare, but it’s happening nonetheless. It’s hard to not feel discouraged since I have had such great success lately, but I know it’s only temporary. I have an appointment with my doctor on Monday and we will get things figured out. For now, it’s really hard to wake up. It’s always hard for me to wake up. I think most people have a hard time waking up, but I have had an exceptionally hard time the past few days. In the morning and after I wake up, I am not functional for at least an hour. I physically move VERY slowly. I feel like I am stuck in slow-motion and can’t do a thing to speed it up. I am so clumsy that I can barely hold my water glass. Mentally, I have a really difficult time focusing and forget what I am doing often. It takes twice as long as it normally would to take my 3 rounds of pills in the morning. After I give myself my B-12 shot, I feel a bit better and can actually make it out the door to go to work. Of course, I have to go back to my house shortly after leaving, because I have forgotten multiple things.

On top of being slow and distracted, I have loud ringing in my left ear, mild dizziness, mild nerve pain on the left side of my face, a vibrating feeling in my sinuses and behind my eyes, shin pain, foot pain, muscle pain, stiff joints, and light sensitive eyes. All of these symptoms come in waves. I will have 20 minutes or so of feeling awful followed by an hour or 2 of not feeling too bad. I am always way worse in the mornings.

I can handle the slow movement and the pain, but what I have the hardest time with accepting is the mental aspect of Lyme. When it starts creeping in like this, I can feel my “self” starting to disappear. It’s a horrible feeling. It’s like it takes over and kicks you out of your own body for a while. I sit in blank stares often (more than I would normally do), and have very little connection with the outside world. It feels like I get lost. I can muster up the energy to pull as much of my “self” out as I can in small spurts during the day if I want to be social, but the rest of the day is spent lost.

It’s important to be aware that people suffering from Late-Stage Lyme can have mild to severe cognitive effects. I will never forget what it was like to come out of the dark when I started to get better a couple of months ago. It was like the lights were turned back on. My “self” was present and I could connect with others again. It was such an amazing feeling. Right now, the lights aren’t fully turned off again, but they’re pretty dim. But, hey, at least I have SOME light and I know that this will get better.

I am, however, a little bummed that I am seemingly so dependent on antibiotics. I have been on treatment for a year and it’s slightly discouraging to have such a reaction to taking away antibiotics (if that’s the real reason for this flare). I really hope that eventually, I’ll be able to fight this stupid thing on my own. But, until then, I guess I’ll keep up the, as my favorite uncle says, “better living through chemistry”.

To counter this slightly gray post, I will post about my incredibly successful fundraiser sometime in the near future. It makes me feel better just thinking about it. On a financial note, it is more evident to me now, that my hope for being off of meds in one year may not be reality. So, please continue sharing my blog wherever you can so that I can reach my financial goal! Thank you so much for your help! If you have any funny jokes, now is a good time to share below….

Much love!




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