I just got off the phone with the office, and they had my son's lab results.
So he tested negative for all co-infections. She did say that this doesn't mean that he doesn't have any though, which I already knew. But he tested negative.
He also tested negative for "active Lyme". (I forget if it's IGG or IGM, sorry) She said there were 1 or 2 "iffy" bands, but not enough for the CDC to recognize it as active Lyme.
She also said that he tested positive for having been exposed to Lyme, which I already knew because he has a history of the tick bite and EM rash.
So overall, it's good news! She's going to run the reports over with Dr. J, and if he wants to treat based on the "iffy" bands, then she'll call me back.
I think Dr. J is going to say not to treat, because he was confident from the beginning that my son was/is ok. If any new symptoms arise, I will call them back.
I just wanted to share my good news!
Now, is it crazy of me to still think that there might be something lingering in his system? Or do I really have to just let it go at this point and only start to worry if more symptoms arise?
Posted by SForsgren (Member # 7686) on :
If the child is symptomatic, it sounds like treatment is appropriate. With the history of tick exposures, EM rash, and Bb specific bands, that would be enough for me to envision treating.
Posted by Keebler (Member # 12673) on :
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I agree with Scott.
With the history of the rash, and any positive bands - I would consult another specialist who is familiar with ILADS research and patient experiences.
Whether the CDC recognizes a test or "active" lyme is not relevant. The CDC is very ignorant of lyme, really. And, even they state that the tests are not to be used as the sole criteria.
Obviously, you took your son the to doctor because there are symptoms. Unless those symptoms are all gone now, there is something going on. To be on the safe side, I would get a second opinion beyond the minimal CDC criteria.
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And, you posted a question of steroid cream on his face for acne. In light of the history of the lyme rash (and, therefore, lyme) I would still say, that according to the guidelines, still
For anyone who has or who might have lyme, ABSOLUTELY NOT for the steroid cream, shots or any other forms. In a life-threatening emergency a 48-hour advance time on abx is suggested. But then, under the care of a LLMD, preferably.
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[ 03. January 2008, 09:42 PM: Message edited by: Keebler ]
Posted by JaimeeS (Member # 11983) on :
Thank you. My Dr. is the "Dr. J" from CT, very much literate to Lyme
That is why I'm in such a bind - he is the best in the country, and knows what he is talking about. On that note, it was his office that called me with the results, not him specifically.
And also, there is a good chance that I'm repeating her words incorrectly. I'm a newbie to Lyme, so I could be messing up the translation a little bit! But the general drift of the message was good news.
Dr. J, last time we spoke, was confident that my son's symptoms were NOT related to the Lyme. If anyone would know it would be him. It's so hard, I want to believe him, but I don't want to jeopardize my son's long term health.
Posted by JaimeeS (Member # 11983) on :
Let me recap my son's story a little bit.
I pulled a tick off him at 9 months old. Two weeks later the EM rash appeared. He was treated with Amoxicilian for 24 days.
Took him to Dr. J. 3 months later. No real symptoms, just a concerned mommy!
Since then he's developed a swollen lymph node behind his ear that doesn't go away. Dr. J says a lot of kids have them, and not necessarily related to Lyme.
And then the face breakouts. They are minor - little tiny white bumps on his cheeks with a little tiny red blotchiness behind it. Again, it's very little, but it is there. My husband has bad skin, so it could be genetic.
This is really all the symptoms. He's now 1 1/2 years old, and he cannot tell me if there is anythign going on that I don't know about. Although he's a happy baby, who is VERY active and playing all the time - doesn't seem that any joints or anything are hurting him.
So I talked to Dr. J about a month and 1/2 ago, and he really felt that my son was ok, not having Lyme symptoms. I can't help but worry, being that I'm his mommy. Any little thing I automatically relate to the lyme/tick bite.
I also asked Dr. J about my son catching a bunch of virus's and colds this summer. Dr. J said that if Lyme was the underlying cause, that it would take my son weeks to months to recover. Not the normal few days to a week that has been with my son.
So I'm in a bind. I'll have to wait until the nurse reviews my son's blood results with Dr. J and calls me back to see what the next steps are.
I'm only guessing based on my last conversation with Dr. J that he will not want to treat, but I could be wrong.
Posted by sixgoofykids (Member # 11141) on :
I would trust Dr. J.
It does not sound like your son is highly symptomatic, he was treated for the bite, and he's only showing past exposure.
If anyone is a Lyme expert, it's Dr. J. Go with his opinion. Watch for more symptoms in case your son ever has a relapse.
All my kids have been exposed through me ... we are treating one and watching the rest for symptoms. That's all you can do.
Oh, and in answer to your question on another thread, never give your son steroids .... if he has any Lyme bacteria left in his body, it can reactivate it.
Posted by JaimeeS (Member # 11983) on :
Thank you Sixgoofykids!
Your advise is what I'm leaning towards. I've consulted with Dr. J a couple of times, and know that he is the best.
It's so hard to know if any symptoms that arise (like the Lymph node) is lyme-related, or just a normal thing that he would have gotten anyways being a growing boy, know what I mean? However, if Dr. J thinks that my son is ok even with his blood results, then I'm going to trust him.
Thanks again for your comment.
Posted by shazdancer (Member # 1436) on :
I would trust Doctor J, Jaimee. If it seemed like Lyme to him, he would tell you. Remind me of your story next time someone claims that Lyme docs diagnose everyone as having Lyme!
The things you have described sound pretty benign, and can be quite normal in babies. You may have caught the initial infection in time, and your child might never have to deal with it again. Keep Lyme in mind if there is a distinct flare of symptoms in more than one category, but for now, sounds like you are in the clear.
Take care,
Shaz
Posted by webmeg (Member # 13647) on :
I agree, too - trust Dr J but also trust your instincts. You sound very in tune with your son, you will know if he starts to truly become symptomatic.
Can you post what bands were "iffy"? Just curious...
~webmeg
Posted by Beverly (Member # 1271) on :
Ditto to trust Dr. J, if your son starts to develop symptoms he will treat him. Hang in there.
Posted by Tincup (Member # 5829) on :
Dr. J is the best.
Posted by Geneal (Member # 10375) on :
Just an FYI. Back in May of 2007 I posted a thread regarding
Lyme disease symptoms in children, toddlers and congenital.
I myself was researching my children's possible symptoms.
Some symptoms are abstract, like a red pinna (ear).
My son had that.
Being born with heart defects. My son was born with a VSD.
Slow at hitting developmental milestones.....Well he didn't walk until 15 months old.
He had more positive bands on his Igenex WB than anyone else in my family.
I am pretty sure he has congenital Lyme.
He has been receiving treatment since last June and I am happy to report
His ears no longer turn red. His "murmur" is gone.
He continues to meet developmental milestones and recently (age 4)
Just climbed on a two-wheel bike (no training wheels) and rode it.
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