I have avoided writing this almost as much as I avoid taking fish oil supplements or doing my B-12 shots. Writing about something makes it real. I guess you could say I’ve been hiding in a fog of denial. I’m in denial that this is my life right now. Denial that I have something implanted in my body for an unknown period of time and my life revolves around an IV pole. Denial that this disease threatens more than my own health, but also the health and well-being of my family.
I’m only 34… (ok, 35 next week and I am in denial of that as well!) But my quality of life is much closer to that of a 95 year-old. I tell myself that this is not forever and it is only a season, but each month that passes makes it harder to believe. With this disease, I don’t know what my future will look like and no one is making any promises. I know people who have been struggling for 20 years or more with little to no improvement – even with the best doctors and treatments.
Then I hear the hopeful stories like Olympian Angeli VanLaanen who was misdiagnosed for 14 years and after 3 years of treatment for Lyme, she was back contending in the Olympic half-pipe skiing in Socchi this year. Her story is pretty inspiring. I encourage you to watch her short documentary about her journey – LymeLight. Her story gives me hope and even though it is hard to ignore the thousands of stories out there of lives that have been destroyed by this awful disease, I continue to pray that this aggressive treatment will move me into remission.
One of the most devastating aspects of this diseases is the fact that researchers are just now scratching the surface of understanding Lyme and co-infections like Babesia, Bartonella, Masters Disease, etc. I discovered last year that it can be passed from mother to child, congenitally.
My little C has had health issues off and on since she was a baby. Despite her bursts of exuberant energy, she has days of bad fatigue and she misses school often. I actually had to go get her from school the afternoon that I started this post because she couldn’t make it through the day, and now she has missed three days this week. She slept for almost two days straight.
She has chronic infections, headaches, insomnia, joint pain and her lymph nodes are always very swollen – sometimes it looks like a golf ball under the skin on her neck. Her pediatrician has told me many times that it is like her body is always fighting some kind of infection and now we know she was right. Since she was about 3, she has complained of pain and stiffness in her neck, so I started taking her to the chiropractor this year to get her some relief from the pain. It helps quite a bit, but it’s just a band-aid.
I have always hoped that everything was just growing pains or the result of her love of cartwheels and dancing. After I was diagnosed with Lyme, the constant fear about her health lingered in the back of my mind. I kept praying that I was just being an overly concerned mother and there was nothing to worry about.
This year I decided to have her tested for Lyme and co-infections and we got the results over a month ago. I just couldn’t write about it yet. I couldn’t even talk about it. I tried desperately not to think about it. The 6 bands (23, 31, 34, 39 and 83/93) on her Western Blot test that are specific for Lyme were positive. I’m not sure if I passed it to her in the womb or if she was exposed from a bite, but according to her symptoms and how they have progressed, it was probably passed to her from me in the womb or from breast milk. One of the top specialists on childhood Lyme has done extensive research on children with Lyme and she has every single symptom for congenital Lyme Disease.
The problem with treatment is that once the bacteria is in your blood, tissue and joints for so long – starting aggressive antibiotic treatment means the bacteria can become more active and cause symptoms to be worse, not to mention the herxing that can make things miserable. But the longer treatment is delayed, the harder it can be to treat. It’s a double-edged sword. As a mama, it breaks my heart to know that either way she will have suffering. It’s a horrible thought.
I know I didn’t cause it, but it hurts knowing that if I had known more about Lyme and if I had knowledge of Tick-Borne diseases when I got bit, maybe the outcome for both of us would have been very different. She is currently on oral antibiotics and her body is fighting. She has had some really bad days, but I’m praying that this is the worst it will get since we are being proactive with her health while she’s young. I hope that if we pulse treatment now, she will not have the Late/Advanced Stage Lyme symptoms later in life.
Right now, all we can do is take it a day at a time. Please pray for our family. This week I could hardly take care of myself, let alone my sick baby girl, so figuring out how this is going to work right now is the hardest part. I’ve been literally clinging to scripture to get me through these hardest of days. This one has been my life line lately.
I’ve been encouraged lately from a woman in my online Lyme support group. She writes with hope about her journey with Lyme and I have always related to her posts. Her daughter also has Lyme. Although this journey has been pretty excruciating, I’m thankful for those who make me feel less alone in this battle. I encourage you to read her blog here: Finding God After Midnight and please pray for her and her family, as well.
Love and hope,