Keep Your Chin Up

Hey everyone! We have a few updates on our Lyme battle. At the beginning of August, I got all my labs re-drawn again. Each time they usually take around 9-13 vials of blood. Later that night I woke up around 2am in severe pain; a pain I haven’t experienced before. My entire body was in pain. I was having severe chills and my temperature was 102. I was also experiencing a lot of stiffness in my neck. I could hardly move. Together my husband and mom decided that we had better get to the emergency room to get checked out due to the complexity of the Lyme disease, and to make sure it wasn’t anything else. My sweet husband and loving mom got me to the car and we got up to the ER. The doctor we had there was outstanding. He was thorough and very knowledgeable. They did all sorts of blood work and tests. They also helped get me out of pain and gave me some fluids.

Initially everything came back clear, so the doctor told us that he felt that the best next step would be to perform a lumbar puncture to rule out meningitis or encephalitis due to my symptoms. I was instantly shaking my head saying no. I knew it would be painful. But I also knew that he knew what was best. They got me ready and had me roll on my side into a ball. I was so scared/nervous but I just held (squeezed the life out of) Landon’s hand and cried. All I can say is OUCH. I never want to have to do that again. But I am glad they did to make sure nothing severe was going on. We waited for the results and thankfully everything initially looked clear, and they weren’t quite sure what was going on. The doctor thought some weird virus maybe. We knew we would need to get ahold of Dr. J the next day and see what he thought about it all.

We got home and rested the entire next day. It took me about 5 days to recover after that experience but we are so grateful nothing serious was going on. We talked with Dr. J and he said that often times when Lyme patients’ get their blood drawn (which I had earlier the day of our ER visit) that it mixes things up and can cause a major reaction, which we think is what happened with me. Crazy right?

The next week my husband and I got to get away and take a break in Hawaii with his family. It was so nice to get away and not think about Lyme disease for a couple of weeks. A huge blessing we had while we were there was that I felt AMAZING! I had no seizures, and I didn’t feel crummy at all! I was so worried that we would go and that I would feel terrible the entire time, but it was the exact opposite. For once in 4 years I felt like me again. I felt healthy, I felt like the real Maddie. I actually was able to go on a hike and swim for once! I was able to walk around for more than an hour and feel like I could keep going. It was such a tender mercy for Landon and I. We lived it up while we could and had a great vacation.

A few days after we got home we had our appointment with Dr. J, time to see what my CD57/HNK1 numbers came up to! We were anxious to find out. Quick recap- the last number we had for this lab was 125. We need it to be at 150 to start weaning off of antibiotics. As we sat and talked before we looked at my lab paperwork Dr. J said that my CD57 levels could have dropped, and that he sees that happen, due to the fact that Lyme doesn’t give up that easily. Just because I am feeling better he said that the disease will push back, because it is just trying to survive as well.

My new CD57 level has dropped down to 87. Instantly my heart sunk. But I thought I was starting to feel better? Why weren’t my levels showing this? But after talking with Dr. J and Landon all of our spirits were lifted. Dr. J said “don’t let this discourage you. The most important thing is that you are feeling better in many ways. So we keep pressing forward.” So that’s what we are doing. To see where my CD57 numbers have come since day one (when they were in the low teens) has been such a long ride, but they have been improving. Yes, we have set backs, but that is the nature of this disease. You have to keep fighting!

Since last week we have started another die off phase. The good times of feeling good lasted for 3 whole weeks though- such a miracle. I started having seizures again last week, and so far we have had 4. But we have our heads held high. We are positive. We have seen what my body is capable of and we know I am getting better. I know that one day in the near future my levels will hit 150. I know that one day I will be my healthy self again, the Maddie I can recall in the back of my mind, and that one day we will be able to have a family! We are so blessed, beyond belief. I am so grateful for doctors who care and do their job. I am also grateful for family support and for our strong religious faith that gets us through the rough patches. Keep fighting everyone! And always remember to, “be kind, for everyone you meet is fighting a hard battle.”

–Plato-

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