If you've been following along, you know one of my greatest worries has been what to do for our children. They most likely contracted Lyme Disease from me in utero. They both tested positive for Band 41 on the Western Blot Test, which is not Lyme-specific, but is typically the first band to show up in someone with Lyme Disease. For the past two months, I have talked myself blue to family and friends (and anyone who would listen) about what to do for my two angels. Should I take them out of state to one of the big Lyme-Literate Pediatricians (or MD/ND's who have treated children successfully), like Jones, Corson, Bovenzi, Klinghardt? They are supposedly the best, but they are out-of-network and out-of-state, so visiting one of these doctors could set us back financially in a big way. Should we take them to a Lyme-Literate doctor who doesn't have a tremendous amount of experience treating children, but will, and have been successful in treating adults? Or perhaps I should try to find a pediatrician locally who is willing to learn and will work with one of the big out-of-state docs? Round and round I went.
Our children's pediatrician (who we loved), hesitated to believe I even have Lyme (with a CDC positive test and all the symptoms.) So, we moved on right away, afraid to waste any time. In my search for a Lyme-literate Pediatrician, I found a wonderful new pediatrician about 25 minutes away. I chose this office for a few reasons: 1. She was a MD who also specializes in Homeopathy and Chinese Medicine (Naturopathic/ Homeopathic doctors are often knowledgeable about chronic and congenital Lyme Disease or are willing to learn), 2. I had heard good things, and 3. I couldn't find anyone locally to recommend a Pediatric LLMD, either because they didn't have one or they didn't want to tell me in order to protect their doctor (insurance companies like to slap Lyme-treating doctors with lawsuits for treating with long-term, high-dose antibiotics.) I was hoping this new pediatrician would be open to learning.
We have only seen a Physician's Assistant (P.A.) so far, and she was great. She had actually done research about Lyme before we arrived. She wasn't very familiar with it, so she took the time to educate herself. "I don't know why anyone would say your son doesn't have Lyme Disease. It says right here that Band 41 is the first one to show up and he has over half the symptoms." I almost cried. She did end up referring me to an Infectious Disease doctor, which is one of the worst places you can go with Advanced or Congenital Lyme, but one of her co-workers who has personally worked with this doctor felt he would be open and helpful. This Infectious Disease doctor couldn't quite get it together though, rescheduling my son's appointment twice. I took it as a sign. I was uneasy about the appointment anyway, so I cancelled and kept looking.
Finally, I got in touch with another local mom who has Lyme and had passed it on to her daughter in utero. Her 10-year old daughter has been treated by a local doctor and is doing great! She is in remission, no longer experiencing any symptoms and got straight A's in school last year. And the best part? She was willing to share the name of her doctor with me. Hallelujah! She gave it to me with a caveat, however: this doctor was no longer accepting new patients. But, she encouraged me to go to her practice instead, seeing anther doctor there. Perhaps the doctor I saw would consult with her doctor? She was right! Our appointment was today and the doctor was not Lyme-Literate, but immediately consulted with my new friend's doctor. They ordered tests that were music to my ears: CD57, Babesiosis, another Lyme titer to see if other bands show up this time, and many more.
I am relieved, but cautiously so. What if the labs don't show anything? What if his immune system is too weak to pop positive on any bands this time? The test is for antibodies and if his immune system is too weak to fight, he will get a false negative. Then what? If the doctor refuses to do a clinical diagnosis, we will be back at square one.
The lab draw was extremely traumatic for my sweet boy. They wanted to take about 15 full vials! They only got about 7-8 because his veins kept collapsing and they had to stick him 3 times! He was HYSTERICAL. I couldn't calm him down. He was out of breath and he'd half-close his eyes in his hysteria and roll his eyes back in his head, so all I could see was the whites of his eyes. It was awful. I thought he was going to pass out. Two nurses held him down and I was at his head trying to calm him down, while another nurse kept sticking him...again and again. Each time they got the needle in, they dug and dug to find the vein. My heart broke for him. He is so young and was already feeling bad to begin with. This experience just pushed him...and me...over the edge.
He has been lethargic and depressed since we left the doctor's office. I am hopeful that the lab results will be such that we can move forward with treatment and his pain and suffering will not be in vain. I pray that my little guy is feeling a million times better some day soon, from this nasty virus and from Lyme. He has a whole life ahead of him and it should be one of fun and friends and laughter...not needles and joint pain...not sensitivity to sound, hearing issues and depression.
Hang in there my brave boy. Brighter days are coming!Be a Fan
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