Lyme Disease?

[marcyinPA]

My DS15 hurt his knee two weeks ago. Had an MRI, which turned up nothing as far as tears to the ACL, thank goodness. However, the orthopedic dr. did drain 7 cc's of fluid from his knee, and then sent us for blood work to rule out anything like Lyme.

Well, the results came back today, and he tested positive. The one part of the blood work showed that he's probably had it for a while. We never saw a rash or anything...ever. He is tired a lot, but we chalked that up to being a teen.

Our PCP started him on Doxycycline for four weeks, 2x a day.

From what I know, which isn't much, it will always be in his system. What else do I need to know about Lyme? Truth be told, I'm scared.

 

[stm61]

Ds17 had Lyme's when he was about 7/8. He was like your ds, no rash, no symptoms, nothing, until he woke up one Sat. complaining his shoulder/arm hurt. He said he fell off a skate board so we went to the ER. They said he was fine, gave him a sling to wear when it really bothered him. He was fine by Mon. The next Sat. he woke up complaining about the opposite shoulder/arm. Back to the ER, this time they could see it was definately swollen. Negative x-rays, ds didn't remember actually hurting himself, we got a referral to an ortho. Ortho dr. redid x-rays just to be sure, and drained the liquid off his elbow. He took one look at the color and said ds definately had Lyme's, which the lab confirmed. Ds must have been more advanced because he was treated by an infectious disease dr. He went 2 or 3 times a week for IV antibiotics, which he had an allergic reaction to half-way thru treatment. That meant an overnight in the hospital to desensitize him, (because of his age/size there was only 1 med they could safely use), and starting the IV treatment all over again.

Now, 10 years later, he's fine. He was lucky. I asked the specialist how long he thought ds had the disease before he was diagnosed, he said several years! He was at risk for some very serious complications because of that, but he's fine now. The only side effect I can really see is he's always cold. This was a kid that could not stand blankets, he'd strip naked in Jan, telling me he was hot! Now, he walks around the house wrapped in a comforter every morning, when his siblings are comfortable in shirts and jeans. He also tends to have a lot of aches/pains, but he's my Drama King, so I can't say it's related to Lyme's. A regular Lyme's test (can't remember what it's called) will still come up positive, so I have to remember to tell the dr. to do a more specialized test (a Titer maybe), that will show it's antibodies, not the actual active disease (I think that's how they explained it, I need to go to bed lol). It definately hasn't kept him from being a very active kid. Actually, he's ADHD, so he was very over-active when he was younger! He has none of the medical issues that scare you so much when you look Lyme's up on-line.

 

[marcyinPA]

Thank you for responding!!

The fluid that was drained from DS's knee looked clear to the orthopedist. Our PCP did mention that he wished he had sent it for testing. Oh well..it's gone now.

My DS is a drama king as well...and has always had aches and pains, fatigue, etc. We just chalked it up to him being a tween, and then a teen. Never in a million years did I suspect Lyme!! I feel AWFUL.

I'm hoping that this course of oral antibiotics is enough. Did your DS have an EKG to rule out any heart problems? A friend of mine suggested that this might be a good idea, since we don't know how long he has had the disease. (I'm suspecting that he's had it for years and not months...) Our PCP did not mention the EKG, but I'm thinking of calling him to see if he would refer him for one. I just need the peace of mind, you know?

He is going through PT right now for his knee, which is still swollen. I'm hoping that once the PT hears the diagnosis, he can help with some exercises for DS's joints.

I really appreciate your honesty...your story is encouraging to me!!

 

[shinysparklybubbles]

My brother has Lyme's (he's in your neck of the woods too!) he was very lucky and saw the bullseye on his neck and had the 4 weeks of antibiotics. I think it's been about a year or so since he found out he had it. No problems to report since then.

this is going to sound crazy, but do you have any pets? If so, get them tested. My brothers dr told him to get his dog checked and sure enough she had it. Lymes can really affect animals.

 

[mmorrison]

I had it for years undiagnosed. After 28 days of pic line antibiotics I am symptom free for 4 months!!!!! Yay!!! I tried the oral but needed the antibiotics in my blood stream for the Lyme to be kicked in the butt. Good luck!!! Don't be afaid to go back to the dr if his symptoms improve and then come back. My third time was a charm.

 

[stm61]

Thank you for responding!!

The fluid that was drained from DS's knee looked clear to the orthopedist. Our PCP did mention that he wished he had sent it for testing. Oh well..it's gone now.

My DS is a drama king as well...and has always had aches and pains, fatigue, etc. We just chalked it up to him being a tween, and then a teen. Never in a million years did I suspect Lyme!! I feel AWFUL.

I'm hoping that this course of oral antibiotics is enough. Did your DS have an EKG to rule out any heart problems? A friend of mine suggested that this might be a good idea, since we don't know how long he has had the disease. (I'm suspecting that he's had it for years and not months...) Our PCP did not mention the EKG, but I'm thinking of calling him to see if he would refer him for one. I just need the peace of mind, you know?

He is going through PT right now for his knee, which is still swollen. I'm hoping that once the PT hears the diagnosis, he can help with some exercises for DS's joints.

I really appreciate your honesty...your story is encouraging to me!!

DS never had any of the classic signs of Lyme's. He was never tired, and never complained about aches and pains (boy have times changed!), but he was only 7 1/2. Actually, he was so hyperactive I would have taken him for a physical if he had started feeling so tired or achy! It never even crossed my mind that he might have Lyme's.

I don't remember DS having an EKG or any other testing, but it has been 10 years. What I mostly remember is making that 40 min. drive to the specialist 2 or 3 times a week, with 2 yr old twins and a 5 yr old, and keeping them quiet in a VERY small waiting room, while DS was dragged into the treatment area lol. He wasn't in any pain, they kept a hep-lock in so he wasn't getting stuck every time he went in, he was just being his usual Drama King self.

He's never had any illness that required an EKG since then, but he's wanting to join the military this fall, so he'll definitely get one then. He never had any PT or OT because once the fluid drained he wasn't in any pain. I remember he was very upset because that was the year he finally moved up from t-ball and he couldn't play for half the season because of the hep-lock in his arm.

Oh, I wanted to clarify something. When I said he was always cold, I don't mean constantly cold. He complains about the heat all summer (we're in SC and it does get hot!), and refuses to wear a winter coat until the temps are in the teens, like the rest of the boys in our high school. He just seems to feel cold sooner then the other kids, if that makes any sense. I compare it to me and DH: I'm freezing in sweats, under a comforter, while he's sitting on the couch in a t-shirt, looking at me like I'm nuts.