Ry's Fight With Lyme Disease: Congenital Lyme And Lyme Carditis

Every Lyme story is different. Every path to a diagnosis is different. The one thing that remains the same is that no matter what the difference may be, the battle is extremely hard.

Since the birth of my son, Rylan, in 2009 I had noticed things that didn’t quite seem right. His skin was extremely bumpy and red. He constantly itched and anything we put on him seemed to irritate him even more. He would get sick randomly with symptoms like runny nose, cough and fever, but they would disappear just as quickly as they appeared.

As he got a little older, he would start to tell me that his knees, legs, elbows or shoulders would hurt. This is when I really started to worry. I knew a 2-3 year old should not be telling me their joints or body parts were hurting. Every now and then he would tell me his chest hurt as well.

Unfortunately, the list just kept growing. As he started expanding his food intake, you know, the typical child diet of spaghetti, mac and cheese and chicken nuggets more symptoms started  appearing. His stomach was extremely bloated, while the rest of his body was rail thin. You could see every rib, every part of his spine and there was no “meat” on his arms or legs.  He would have persistent battles with constipation and when he would finally go, it would be bright green. He also stayed at 35 pounds for almost two years.

Around 4-5 I realized his emotions were extreme as well. He would be fine one minute and at the drop of a hat be in a complete melt down. One minute he is laughing and the next he is crying. It would switch back to laughing just as quickly as it switched to crying.

I knew in my gut something was wrong with my son. I started researching and found that gluten can cause the skin and digestion problems he was having. I immediately took him off gluten and noticed a drastic difference. Fairly quickly, his stomach wasn’t as bloated anymore, his stool wasn’t bright green anymore, his skin even seemed to improve somewhat.

While a gluten free diet helped, it was clearly not the culprit as he still had a lot of unexplained symptoms.

What I have not mentioned yet, is that I had been fighting these same symptoms for 20 years. I was beginning to wonder if what I was battling most of my life was passed onto my son. In 2015, I finally received an answer to my problems. I was positive for Lyme Disease.  After some research I learned that it was possible to pass it on in the utero. I immediately ordered the test for my son. One week later I got the call; he was CDC positive for Lyme Disease. He was 5 years old at the time.

No one can ever prep a mother for being told their child has a chronic illness, but to be told that he got it from you is even more painful. In one of his emotional breakdowns since diagnosis, he asked me through tears why I gave this to him. There is no preparation for the guilt, for the heartache. And I can only hope that as he gets older he realizes that I would never do this to him on purpose.

Since his diagnosis, he has done several treatments with antibiotics. We also have a detox regimen at home that consists of a sauna, Epsom baths, skin brushing and as little toxins as possible. He is still on the gluten free diet, as we can see a drastic increase in symptoms when he eats it.

It has affected his school because he will get withdrawn and anti social. He will pull his desk away from the rest of the class, or just sit in the corner by himself. He believes everyone is out to get him. He can tell you 100 possible ways a scenario can go badly and not a single positive.

Because of this, we have talked with his school and they help us out tremendously. They know what to look for when he is having a bad day. He is allowed to leave the classroom twice a day for 15 minutes to go to the nurses office or the counselor for some quiet time. This has helped him drastically get through the day. He was officially placed on a Medical 504 with his school less than a year after diagnosis.

About a year after diagnosis, the chest complaints came more frequently. I decided to get him into a cardiologist. We found out that he was born with First Degree AV Heart Block due to the Lyme. We now have another worry on our hands. There is nothing we can do about this heart block, but monitor it and make sure that it does not get worse. We will have to watch the meds he takes as he can not take any blood thinners or other medicines that would affect the heart.

Though he is still symptomatic, several symptoms are now gone. He has gained 10 pounds (though has now hit another stall and has been at this weight for a year), random fever like symptoms and bloated stomach are all gone. He also complains less of body pains.

He still has a long way to go. We all do. But now that we know what we are up against, he will get better. I promise him every day that I will do everything in my power to get him better. No child deserves any illness. Unfortunately, Lyme Disease is misunderstood, underestimated and under researched. This just makes the battle even harder, but we won’t give up.

To the mommies out there, follow your gut instinct. If you feel something is wrong, it most likely is. I fought against those that insisted my son was just “being a kid.” You have to do the same to find the answers. If you have been diagnosed and believe you had it while pregnant and especially if your child shows signs, please have them tested.

To all Lymies: We will get through this…together.