A beautiful thing about illness is the longer ago it is, the less you remember how bad it is. I had started getting used to being less sick and more functional. The last few days have reminded me what it is to be totally leveled by your illness.
Minocycline is no friend of mine. If you remember my earlier post I was on it for 4 days before I knew I had Lyme. 24hrs after coming off it because I felt lightheaded I had an allergic reaction to it.
For the last 3 days I had doubled my dose of minocycline and was really struggling with severe lightheadedness but I thought I was going to make it through. Last night I had a allergic reaction that reminded me how awful neurological symptoms really are. I sat watching the hours tick away last night while I had the same reaction I did almost 2 years ago. It felt like someone had pumped cold poison into my veins and lit my skin on fire and was scary disoriented. This attack fortunately only lasted for about 3 hours into about 2am. For the rest of the night I sat fully awake, spinning & disoriented until 6am when I caught 2 hours of sleep.
When I woke up I knew the medication was still going strong. I couldn’t put words together easily, my processing was off… I called my mother down to help me walk because I was so lightheaded I kept having to crouch to the floor for fear of falling over. As the day went on the severity of the symptoms lightened but even tonight almost 20 hours after the attack my brain is struggling. Spinning, disoriented, shaking, lightheaded…. neurological symptoms are hands down the most awful thing I have ever been put through.
After these long hours of awful symptoms, many alone, I am reminded why suicide rates with Lyme patients are so high. No one should ever be subjected to how sick this disease can make you and how alone it can leave you. With mine, I know this reaction will pass and maybe eventually people will call again. All I can say at this point is I wouldnt wish this isolated hell on anyone. There is no excuse for not finding a cure.