Late stage Lyme Disease is a complex disease, especially in young children. My children are 3 and 6, and thought to have contracted it in utero. We suffer from Stage III Lyme and co-infections, Babesia, Bartonella, Mycoplasma Pneumonai and Rocky Mountain Spotted Fever. So far, we are being treated with oral antibiotics and holistic treatments.
A challenging part of having Lyme disease, for me, is that I look just like you. Looking at me, you might never know I had it. There are some days I feel totally normal, and on these days it makes it really difficult to explain to others when they look at me and ask what the big deal is about Lyme. But these days are few, and mostly are limited to hours within the days. More typically there are days that I barely brush my teeth and I have to crawl back into bed. There have been days I have called my husband to come home from work, because I couldn't get off the couch to get my baby a bottle of milk from the kitchen 20 feet away from me.
I was found to have Lyme disease in late stages, which means for me that I have had it for at least two years (more likely, at least 7). My two pregnancies are what pushed the dormant state of lyme into an active state.
Having the disease for so long makes it more difficult to treat. Having co-infections complicate your treatment. One of my biggest life changes is that I must sleep, and I do sleep, usually from twelve hours every night - and I am still tired. By 3:00 p.m., I need to be home, I have hit the wall. The exhaustion that Lyme disease sufferers have is comparable to that of congestive heart failure. It would not abnormal for us to sleep 20 hours a day.