So my daughter definitely has Bartonella (a coinfection of Lyme disease) and some secondary infections of Lyme disease. No conclusive positive Lyme yet. Unfortunately, a negative Lyme test results does not mean she does not have Lyme disease. Tests for Lyme disease is not fully accurate and tends to give false negatives. The sad reality though I cannot afford to retest her at the moment. All the tests I am going through, my daughter has gone through and my youngest son is going through, the numbers are starting to add up quickly. The doctor started her on two antibiotics. The plan is to continue the treatment for about 4 months and then retest her then.
At the lab waiting room while waiting to get our 4th blood work done, my daughter asked with a smile on her face:
Daughter: Mom, if I am sick, am I going to become like you? (referring to my cane and the fact I am spending 90% of my day unable to get out of the bed)
Mom: Let’s hope not honey. I heard kids do much better than adults with the treatment. (How do I explain what a Herxheimer reaction is to a 7 year old girl?)
Daughter: I am afraid not to have a job. If I get too sick, I can’t go to school. If I cannot go to school, I cannot go to college. If I don’t go to college, I can’t get a job.
Mom: You are very smart to make that connection, but let’s focus on what is in front of us right now. We will see, if you are sick. If you are, we will start the medication and see how you do it on it. I am confident you will do great. You are a strong girl.
I was speechless and was not sure what to say. I know as a mommy I am supposed to give her courage. At the same time I don’t want to give her false hope. It is going to be hard. I know first hand how hard it is to experience Herxheimer reaction. I said those words to reassure my daughter. I think I managed to hide my emotions – the fear. I am more afraid for her than she is. Is she going to complete this school year? If she cannot go to school, how are we going to handle her education? I am not working, but she needs to learn. Being sick and having to do school work is not a good feeling. Imagine having the flu and going to school/work, but instead your flu is always there. How do I take care of her, when I cannot even hold a glass of water?
Same anxiety over again
This morning I had to take my 5 year old to the lab. Watching a tiny body getting poked in the arms for the first time is not fun. He has another round of blood work to go through in a month. They could not do it all today, because it was too much blood for his little body. Now I am having to stand by with anxiety for his results.
I must admit my daughter is more brave than I am. She is only 7 and she asks questions. She talks to me about her feelings or her symptoms and she is very descriptive too. My son is clueless, of course he does not understand what is going on. In this whole process I am breathing heavily, because it feels there isn’t enough oxygen in the air. I can’t handle what she is going through or what he might go through. I don’t feel strong enough, because I don’t know if it gets any better.