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Lyme Confirmation...
Hello folks. I have a story to relate if you feel like reading a bit. We live in Central Virginia near Charlottesville, just outside the "hot zone" for Lyme but it does occur here. When my son was two years old we pulled a tick off of him that later developed the classic bullseye rash. We took him in since I had vaguely heard of lyme and something told me the rash wasn't good. They treated him with antibiotics as if he had lyme and we went merrily on with life. That was two and a half years ago.
Last summer (4 years old) we pulled another tick off the back of his ear and this one had become a little engorged so it had been there a bit. A few weeks later he started developing flu-like symptoms with intermitent fever and facial rashes for about six weeks. They might last a few hours or few days, then gone again. First they thought it was a normal virus, then maybe fifth disease, then after another visit they tested for fifth, lyme, and EBV. The Elisa came back positive for lyme but the western blot negative. The symptoms slowly decreased but he wasn't himself. He was always tired and immensely cranky at times during the day, especially in the morning. This was unlike him since he is a pretty easy-going, laid back kid. He would wake up crying and often said he was just "so tired." We thought that maybe he was just being lazy. Anyway, later in the summer we noticed a swollen lymph node on the back of his head. We took him in again and the doc said it was probably from a scratch or something since it was localized. Within a few months many more nodes popped up, in his neck and jaw, but none were very big at all. After investigating on my own I discovered that little tikes often have enlarged nodes that aren't very big due to fighting off viruses and such. Anyway, no more fevers or rashes but something still just wasn't right because the lymph nodes, fatigue, and occasional indescript pain remained.
Fast-forward to this past Christmas. Over a few days he complained about his knee hurting, then a few days later he could not bend it and it was swollen like he'd blown out an ACL and he just hobbled around like a three-legged dog. Within a few more days it went down so we just figured he had hurt it horsing around or something. Three weeks later the other knee did the same thing, the total progression of pain, swelling, limping, and swelling going down was about a week. He had his five year well visit scheduled within a few weeks so we waited to tell the doc then since the swelling was gone again.
The visit was Feb. 2. He checked out fine but when we told the doc about the knee swelling he made a call to the hospital immunologist. They decided to do another lyme elisa and WB. Three days late the elisa came back positive...and this time the WB came back positive with 10 out of 10 bands matching. WOW!
Since the first Elisa was pos but the WB neg the doc theorized that the elisa was picking up his original infection and that he was not reinfected. The new evidence is clear that he was subsequently reinfected this past summer. His original WB was 4 out of 10...probably the infection was working its way up, but if I had known then what I know now I probably would have had him retested later in the summer.
Here is the good part. When we announced to our friends and family that he was getting retested, the prayers went up for him. The next day he woke up in a good mood and has been a different kid since. He didn't start his meds until this past Friday but the healing began when the prayers began a week before, no joke. The antibiotics are now kicking in and we now have our boy back. It is remarkable.
The reason for my story is two-fold. Re-do that WB if your original was neg and inside a few months of the bite. Second, go to the Lord in prayer. It is hard to really tell the story well in this format, but just trust God.
Thanks for reading.
Last summer (4 years old) we pulled another tick off the back of his ear and this one had become a little engorged so it had been there a bit. A few weeks later he started developing flu-like symptoms with intermitent fever and facial rashes for about six weeks. They might last a few hours or few days, then gone again. First they thought it was a normal virus, then maybe fifth disease, then after another visit they tested for fifth, lyme, and EBV. The Elisa came back positive for lyme but the western blot negative. The symptoms slowly decreased but he wasn't himself. He was always tired and immensely cranky at times during the day, especially in the morning. This was unlike him since he is a pretty easy-going, laid back kid. He would wake up crying and often said he was just "so tired." We thought that maybe he was just being lazy. Anyway, later in the summer we noticed a swollen lymph node on the back of his head. We took him in again and the doc said it was probably from a scratch or something since it was localized. Within a few months many more nodes popped up, in his neck and jaw, but none were very big at all. After investigating on my own I discovered that little tikes often have enlarged nodes that aren't very big due to fighting off viruses and such. Anyway, no more fevers or rashes but something still just wasn't right because the lymph nodes, fatigue, and occasional indescript pain remained.
Fast-forward to this past Christmas. Over a few days he complained about his knee hurting, then a few days later he could not bend it and it was swollen like he'd blown out an ACL and he just hobbled around like a three-legged dog. Within a few more days it went down so we just figured he had hurt it horsing around or something. Three weeks later the other knee did the same thing, the total progression of pain, swelling, limping, and swelling going down was about a week. He had his five year well visit scheduled within a few weeks so we waited to tell the doc then since the swelling was gone again.
The visit was Feb. 2. He checked out fine but when we told the doc about the knee swelling he made a call to the hospital immunologist. They decided to do another lyme elisa and WB. Three days late the elisa came back positive...and this time the WB came back positive with 10 out of 10 bands matching. WOW!
Since the first Elisa was pos but the WB neg the doc theorized that the elisa was picking up his original infection and that he was not reinfected. The new evidence is clear that he was subsequently reinfected this past summer. His original WB was 4 out of 10...probably the infection was working its way up, but if I had known then what I know now I probably would have had him retested later in the summer.
Here is the good part. When we announced to our friends and family that he was getting retested, the prayers went up for him. The next day he woke up in a good mood and has been a different kid since. He didn't start his meds until this past Friday but the healing began when the prayers began a week before, no joke. The antibiotics are now kicking in and we now have our boy back. It is remarkable.
The reason for my story is two-fold. Re-do that WB if your original was neg and inside a few months of the bite. Second, go to the Lord in prayer. It is hard to really tell the story well in this format, but just trust God.
Thanks for reading.
I was heartened to hear that your son is back to himself! That is wonderful, and hopefully with this treatment he will not have any lingering effects.
The thing that I would wish for would be a better way to test for Lyme and other TBI's so people and kids like your son and mine didn't have to suffer so long before someone got the diagnosis right.
The thing that I would wish for would be a better way to test for Lyme and other TBI's so people and kids like your son and mine didn't have to suffer so long before someone got the diagnosis right.
Welcome. I hope everyone here reads your story. I am glad you are here and posted it. You told it very well. I'm very happy about the current outcome of your situation but the fact it was not diagnosed earlier angers me. All because of testing. The testing is unreliable and your son had classic lyme disease. IMO, he should have been treated based on symptoms. This could cause him future or ongoing problems. I certainly hope this is not the case. I wish you all the best.
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