Lyme Disease Support Group

Hi, I am new to this. My 5yr old daughter was recently diagnosed with Lyme. She was limping and had a swollen knee (never saw a tick); brought her to the ER where they did xray and blood tests. The ER doctor mentioned Lyme. Referred to an Orthopaedic dr for next morning who concurred that it appeared to be Lyme and conferred with an infectious disease dr. So from what I have been reading about Lyme (horror stories) I feel lucky that our drs appear to be up on this. She is being treated with IV antibiotics through a PICC line. (it was a hellish week for her, as well as me, but I am hopeful that this will take care of it). Any information that I might need to know would be appreciated. Other symptoms she had over the past few months (which, of course I wasn't aware were lyme related at the time) were intermitten complaints about her legs hurting, occasional limping (she plays soccer, I thought it was from that - it always went away), personality change over the summer (went from being very sweet, never had terrible 2's or 3's with her to having tantrums and anger) Although the drs did mention lyme and tested right away, they don't seem to be forthcoming with info about this. I now worry that my 8 yr old might have it because I know that she was bitten by a tick in the spring; it was on the back of her head, and when I tried to remove it the tick's head broke off and was embedded in her. I brought her to her pediatrician and he scraped it out with a needle, but never tested for Lyme. I plan to ask to have her tested, but am afraid they'll say no. Can they refuse? Do I have the right to insist? She hasn't had any rash or joint problems, but does complain about her feet hurting.

If any doctor refuses to test for Lyme, go to another one until someone will.

Is she complaining about the soles of her feet, or the ankle joint or toe joints?

Tom

soles of her feet hurt

I would get her tested as soon as possible. My doctor was super cool about me getting tested. My husband has lyme and I thought that maybe I should be tested because of where we live. My doctor did it just last week My husband has a horrible time with his soles. They hurt really bad in the morning when he gets up, sometimes they hurt so bad he goes back to bed. Good luck with everything!!

Yes, get her tested by an LLMD, if possible.

Pain in the soles of the feet are a classic symptom of Bartonella, one of the co-infections of Lyme disease.

You can also look for pain in the lymph nodes. Does she hurt under her arms, in the armpits, on the inside of the bicep, the inside of the elbow, under the jaw line...anywhere there is a lymph node? It might not be intense pain, but achy pain. That is another symptom of Bartonella.

Depending on which area of the country you are in, sometimes the co-infections are more prevalent than Lyme disease. Here in Maryland, Babesia and Bartonella are just as common as Lyme. The co-infections can complicate treatment (take longer to get better), and are often times treated before the Lyme.

Oh, is the pain in her feet worse in the morning, when she wakes up? That can be another indicator.

And realize, there are a lot of over-lapping symptoms between Lyme and co-infections, so that is why it is important to have an LLMD check her out.

Which antibiotic do they have her on, by IV?

Tom

Please have your kids tested and seen by an LLMD.

I had it during childhood - but we didnt know until my late teens...

There is so much that can be done to ensure that they dont loose quality of life.

Dont let the doc's intimidate you. Not to sound corny but you are a warrior now, with 1 confirmed Lyme and another possible. You are their voice for getting better. Dont let anyone take that from you by making you feel stupid, silly or as if you are over-reacting.

Educate yourself, and empower both yourself and your kids. There is so much info to be found here and some really great people to help you along the way. Make the connections, get the info, do the research. The stronger you are, the less likely the docs will talk down to you. And take no crap...if they wont listen, find someone who will. They are out there.

This is a disease that is grossly misdiagnosed, and just has some horrible baggage...BUT, there is a light at the end of the tunnel. With proper treatment, maintainence, and diet, your kids can live full happy healthy lives...You just have to fight for it. You are not alone - and they arent either. Remember that.

PM me with any questions

Take care and good luck

Christine

PLEASE get that child to an LLMD as soon as possible! I contracted Lyme when I was 7, and I didn't find out I had it until I was 23 (that's how old I am now). I will never get those years back! At this point I have severe, debilitating symptoms. It is very easy for Lyme symptoms to get passed of as normal childhood illnesses. I was bitten in the back of my head when I was 7, and my parents didn't think much of it. They are torchering themselves now because I have been needlessly ill now for about 15 years, practicaly my entire childhood. An important thing to remember about children is that they do not have much life experience. They adapt well. I didn't know feeling so bad wasn't normal, and that continues to be a problem with me. I don't know what healthy feels like, but I am looking forward to it. Trust your instinct, you'll hate yourself if you don't!

M

Update on my 5yr old: The PICC line in her arm caused a clot. After her treatment last Wednesday, she began frantically itching around the site of the PICC, so I brought her back to the emergency room. They removed the PICC and did an ultrasound on her arm, and a chest xray. They told us there was a clot and thought it would be best for her to be transported to Children's Hospital in Boston. We spent two days there. So they switched her to an oral antibiotic (Ceftin, which I believe was also what she was given by IV) and I have to give her 2x daily injections of Lovenex(blood thinner) for the clot for at least a month. Has anyone out there dealt with this in a child this age? where can I find a list of LLMD's in Massachusetts? Any that particularly specialize in children?

Jilly

Click the group leaders link on the left - and contact either Connie or Jamie...there are llmds that can help you.

Hang in there. I know that it is tough and it isnt fair to watch your little one go through this.

I wish there was more that I could offer...just know that there are others pulling for her and you...

Much Hugs

Christine

Update:

So, my little one has finished her course of antibiotics. What now? The drs say thats it, the lyme should be gone, but how do I know for sure? All they said was if the symptoms come back, give them a call. Shouldn't she be tested again?

I did have my middle daughter tested, and it was negative.