Last year I took some time to write about my experience with undiagnosed Lyme Disease. I’ve decided to dedicate the next few blog posts to discussing Lyme Disease as it relates to children. It’s one thing when we experience illness ourselves, but it can be downright heart-wrenching to watch a loved one battle illness, especially when that loved one is a child.
The story I want to share with you today is not meant to attack the medical community. Its purpose is to simply make you aware of some of the misinformation, denial, and utter chaos that exists in the medical community with regards to Lyme Disease. I will be careful not to exaggerate, but I will paint an accurate picture of my first hand experience with regards to my oldest son’s Lyme Disease.
It was a beautiful summer day, and my children were invited to a friend’s house to romp in the nearby river. They thoroughly enjoyed their time and gave little mind to anything other than having fun. The children came home, showered, and headed off to bed. I had no cause for concern.
Within a few days, I noticed a red ring on my son’s calf. There was no denying that it looked like the all too familiar bull’s eye rash that can accompany a recent tick bite. However, upon closer examination, the bull’s eye looked exactly like ringworm. I did a bit of researching online, comparing my son’s mark to numerous others. It sure looked like ringworm.
We went to the pediatrician the next morning who agreed that my son had a textbook case of ringworm. He was given an anti-fungal cream to apply and told that there was no need to return. We followed the treatment plan, but within a few days, the look of my son’s leg had dramatically changed. The site was now quite red and inflamed. We returned to the doctor, who proceeded to change the medication. The new medication proved ineffective, and my son’s leg continued to grow fiery red. It began to swell and was now forming blisters in the center of the ring. My son also was running a low grade fever and feeling sluggish. It was then that I knew exactly what we were dealing with.
I returned to the pediatrician. I then remarked how I no longer believed that this was ringworm. I was convinced that this was a tick bit. I knew it in my “momma gut”.
The doctor’s response? “No, it’s not a tick bite.” He was adamant.
A second pediatrician from the group was brought in. Her response? “No, this is not a tick bite. It is just a severe case of ringworm.”
I replied, “But how do you know just by looking at it? How about you run some tests? How about we treat this with some precautionary antibiotics to be careful.”
The answer was, “No.”
No? Just like that. No further discussion needed. No mind given to the concerns of this momma.
I am not a mother who has ever pushed for antibiotics for my children. To the contrary, I have left them as our last resource when illness strikes. For me to even suggest precautionary antibiotics was completely out of character for me, and my doctor knew it. He told me that I was over reacting. I told him that I didn’t think I was. I was given a referral to a local dermatologist. I left the office angry…very angry.
I reached out to the dermatologist’s office to make an appointment. I was told that I would need to wait two weeks for an appointment. This was not acceptable, but it was providential. I explained that I needed my son to see someone within the next day. I was given an appointment with a new, young doctor. I wasn’t thrilled, but as I mentioned, the Lord orchestrated it.
Upon arriving at the office, the doctor took one look at my son’s now infected leg and was quite concerned. She ran a test for ringworm…twice. Both tests came back negative. She was 100% positive that this was not a fungal infection. I then explained to her that I was concerned that this was a tick bite. She agreed. However, my son’s leg was so red, inflammed, and blistery, she could not even see what was going on underneath it all. She prescribed a strong antibiotic to clear the infection. She told me to come back if there was no improvement or at the conclusion of the treatment. I felt relieved that someone had taken me seriously.
Within a few days of beginning the treatment, my son’s leg cleared dramatically. I was now able to see three small pricks in the center of the now obvious red, bull’s eye ring. I called the dermatologist and told her what I could now see. She told me to come in. She too was convinced that this was a tick bite (or three). She looked at me square in the face and told me that she was the mother of three small children. If this was one of her children, she wouldn’t even bother to wait for a test to confirm Lyme; she would treat it immediately with antibiotics.
That was music to my ears! And so, my son began his antibiotic course.
We were slated to return to our pediatrician for a follow up visit. I told him about our visits and tests with the dermatologist and the subsequent administration of antibiotics for a suspected case of Lyme Disease. His reaction shocked me. He was furious. Furious at the dermatologist. Furious that my son was given antibiotics. Furious that no test was run. Furious that she thought that this was a case of Lyme Disease.
I was confused. This was coming from a man who refused to test my son. A man who refused to entertain the notion that maybe my son had been bitten by a tick. A man who refused to look at my son’s collective symptoms: low grade fever, sluggishness, and a bull’s eye rash. This man refused to believe that this was a tick bit. I assured him that I had the best interest of my son at heart and felt comfortable with the course of treatment. I was flabbergasted and angered beyond measure. I called my husband from the car and cried.
My son continued taking his medication. His fever subsided and within short time the fatigue he was feeling completely disappeared. However, something quite strange was taking place on his leg. While the bull’s eye rash was dissipating, his skin at the site was blistering, oozing, and breaking. I must admit, sometimes I allow my mind to wander to the worst case scenario too quickly. I envisioned that my son had contracted some rare flesh eating bacteria that was eating away his leg.
To calm my fears and my son’s, we returned to the dermatologist. She looked at his leg and had no cause for concern.
Yet another week elapsed with my son’s leg only growing worse. In tears, my son told me for the first time he felt scared. I knew we needed to find some help. I called the dermatologist’s office and requested an appointment with the main doctor. I was told that the first available appointment was not for another week. I had them pencil our name in. I then went to work on finding a way to get that appointment moved up. I returned to the pediatrician’s office and showed him my son’s leg. He agreed that it needed attention. He made a phone call and informed me that my appointment at the dermatologist was moved up to tomorrow.
The lead dermatologist examined my son’s leg. He then proceeded to take a biopsy of the area. He informed me that he would call me personally once the results came back. Within a few short days I received his call.
The doctor told me that the biopsy showed that there was foreign DNA found in the tissue sample. He said that it was likely from bedbugs.
Take a moment to digest that.
You have got to be kidding me. You can’t make this stuff up. I told the doctor that it would not be an unlikely scenario to have foreign DNA from, let’s say, a tick, would it? When ticks latch onto a host, they burrow into the skin. When they are pulled, wiped, or swatted off, some of those parts can remain in and under the skin. Also, when ticks feed on a host’s blood, they regurgitate the blood back into the host, however they add some of their own bacteria to the mix for the return trip. After I explained all of this to the doctor. I repeat, after I explained all of this to the doctor, then reminded him that my son had had a bull’s eye rash, fever, and fatigue, he still stood with his original assessment. Bed bugs.
I went home, and like a stark raving lunatic, stripped my children’s room. Sheets, blankets, curtains, pillows, clothes…you name it. Then once the beds were clear, I investigated my son’s pillow and mattress carefully. All was spotless. My son shared a bunk bed with his younger brother at the time. I examined his bed. All was clear. I then stopped and realized that there was no bed beg problem. Right around the same time I received a call from my pediatrician. He asked me if I had spoken to the dermatologist. I told him that I had. He proceeded to recount the dermatologist’s findings. I then calmly, yet sarcastically, proceeded to ask several questions of my pediatrician:
“Is it possible that the bed bugs in question are so highly intelligent that they come out each night and congregate at the same spot on my son’s leg?”
“Is it possible that they find no other part of his body remotely appealing?”
“Is it possible that the bed bugs in question, who apparently reside in my son’s top bunk, never venture to the bottom bunk to bother my other son?”
“Is it possible that these bed bugs have isolated themselves completely from all other family members?”
“Does any of this seem plausible to you?”
He answered that it seemed unlikely. I told him that it was IMPOSSIBLE! I told him that the foreign DNA found in my son’s biopsy was not from bed bugs; it was from a tick. I didn’t care what he said to the contrary. I really didn’t want to hear it. He had not been an advocate for my son; I had.
It would take nearly two and half months for my son’s leg to clear. After much personal research I discovered that some individuals can have a severe reaction to a tick bite. Blisters form as the body tries to rid itself of foreign matter. It was my son’s situation in every way.
Thankfully, my son was treated relatively promptly after his initial tick bite. Time is of the essence when dealing with Lyme Disease. The longer you wait, the further the disease sinks into the body. The further it sinks into the body, the harder it is to combat.
My son’s story is a good one.
There are still some doctors out there who discount Lyme Disease. I experienced it first hand. If you take nothing else away from my son’s story, please know that you must be an advocate for your children. You must be persistent. You must research. You must be knowledgeable. And, at times, you may need to be a bit fierce and put your foot down.
To close, after that episode with my son, I tested my children annually for Lyme Disease and continue to do so. One year after the tick bite, he tested positive for antibodies. His infection was not current, but one that was in the past.