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My 5 years old "Reactive" on 41 IgG - What's next? HELP!

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Posted 5/9/2014 1:57 AM (GMT 0)
So, my son complained about his sore soles (both soles) mid April. I was a little concerned, but since he had been wearing his shoes weird, I thought of nothing. Then April 29, he said he spines hurt, and he meant hurt from the top (below his neck) to the bottom (tail bone) of his spine. He said it's the 3rd time that it hurt. Oh, he's also been complaining about headache a few times, but I'm not sure if it's pollen allergy or not.

The next day I got him in to see a nurse practitioner in a practice that has a LLMD (but she doesn't accept new patient - and doesn't treat children), hoping that the practice will be at least tick-borne disease friendly - they claim they are Lyme-literate and seem to know about several LLMDs in the area. We didn't go to his regular pediatrician because they are not Lyme-literated.

The NP said they treated kids in an acute stage.....so got WB test from Quest.
All were non-reactive and/or negative, but 41 IgG which shows "Reactive" and "abnormal". Tests on Bart, Babesia, Erhlichiosis, Rocky Mtn Spotted Fever are all negative as well. No test for Anaplasma.

The hand-written note on the test result said, "All tests came back negative."

I don't understand how it's "negative" if there's one abnormal. I mean my son is 5 turning 6, what kind flagella can show on his blood stream? I mean he never has syphilis or periodontics infection. What else can it be?

I contacted the practice, but the nurse practitioner is out.....call the pediatrician (to see if anything they can help) and both of his pediatricians are out of office. My plan is to either get him an IGenex test and/or treat this thing -- even if it's not tick-borne disease, it should still be treated, don't you think?

We all know that 41 reactive actually means something (not sure what, but it means something) unlike what these doctors keep telling us that it's nothing. I'm going crazy with worries, which of course triggering my TBD symptoms.

Anyone can give me their insight, it would be really appreciated.
Also, if anyone know LLMD, LLND, or hearbalist in Washington DC Metro area (DC & VA & MD) who treat children, please please please let me know.

Thank you
Posted 5/9/2014 2:31 AM (GMT 0)
Definitely have him take the Igenex test, and for sure find an llmd for children. It seems to me that I've heard of someone who takes their child to DC for an llmd; I can't remember if it was from this site or one of the Facebook pages for lyme I'm a member of.

Maybe start another post asking specifically for DC llmd in the title of it, and hopefully if it was here that I heard of that the person may see it and answer.

My son is four and was just dx with lyme this past late Jan.
One of my son's very symptoms (besides anxiety and a bit of emotional stuff) was foot pain.
And from there it was other things, and actually rather quickly.

He's been on abx now for 12 weeks and is doing great; so keep in mind that if it is lyme that they say children usually recover faster and more fully (in fact completely fully.)

That's why it's good for you to pursue this for sure.

As far as band 41, I have heard and read to that often it's one of the more common bands to be positive among lyme, and sometimes the first (I think I read that, but can't remember where.)

There's a lyme Dr. who has a blog called lymemd. One of his blogs, from 2008, he discusses band 41. If you google "lymemed, All I got was band 41" you can read his opinion on it.

Hopefully someone can help you out with a dr., and you can get this checked out!
Posted 5/9/2014 2:44 AM (GMT 0)
@ stacestar, thanks so much. I'll start a new post as you suggested.
OMG...your son is dx @ 4. Poor thing. I hope he'll recover.

See, I went through a period where I was counting back my symptoms because I wanted to make sure I didn't infect my son while he was in my womb or when I was breast-feeding him. Now, I got pass through that emotion, and this is happening, so I begin to question myself again and blaming if I could possibly pass this onto him. Oh well, stop on that now before I start crying like a crazy woman again. I'm such a mess.

.
Posted 5/9/2014 5:03 AM (GMT 0)
you're welcome, and thank you for the well wishes for my son; I feel confident he'll get through this and recover, I hope your son can be feeling better soon too, and if your son ends up having lyme, I'm sure he'll recover too!

don't blame yourself if he does have it; it's not your fault. I thought the same thing too for awhile (like wondering how could I miss a tick on my son, but it happens). What's important is doing what we can now to figure things out for them.

and I also remember who has the DC doctor! I'm sure there may be other great lyme dr.'s in those areas you mentioned, but maybe this one in particular might be a good one to look into.

It's a mom who started a Facebook page about her daughter's current experience of and treatment of lyme. The page is called "Lexi's Lyme Life". The mom posts something almost each day, and one day this past week or so, she mentioned traveling the 5 hours (I think it was 5) to DC for her daughter's llmd appt.

The mom is trying to spread lyme awareness. She'd love it if you or anyone would "like" the page, b/c this week she was talking about being happy that they almost have 1000 "likes".
She's just a regular mom and responds to comments, etc. I bet if you followed/"liked" her fb page and then pm'd her she would share her dr. info.
Posted 5/9/2014 5:10 AM (GMT 0)
It will be ok, my 11 yr old just started treatment and we believe his is congenital. My 13 yr old is about to begin treatment and my other 4 kids need evaluation. It's real crappy to feel
You passed this to your babies, I know. I was 6 mths postpartum when I was diagnosed with my now 18 mth old. I nursed all my kids too.... I'm beloved to have had this since I was at least 9 yrs old.

Your little one will be ok! Hugs

My son has only 41 reactive but it was only through quest.
His cd 57 is 42 though, and many other labs are reflecting lyme. He's been dx'd with lyme, Bart, and babesia. He is extremely symptomatic. He has constant foot pain, last year they had diagnosed him at 10 yrs old with plantar fasciitis and he was getting PT 3x a week with no improvement. It was Bartonella!
Posted 5/9/2014 10:04 AM (GMT 0)
Hi my son was 41 only. He had chronic lyme with sinus infection, headache, loss of stamina and memory, processing problems and irritability/temper tantrums. He also complained of pain on the bottom of his feet. We had animals here that were infected and he was outside constantly. He has been on abx, Omnicef since November and made huge improvements.

Disease does have a tendency to relapse so get him to a good llmd asap. As far as Im concerned my llmd changed the course of his life. He has been excelling in academics and athletics since starting treatment. Children are usually very resilient and respond well to treatment. Good luck with your son and hope he is on the fast track to recovery.

Post Edited (BarnGurl) : 5/9/2014 4:07:40 AM (GMT-6)

Posted 5/9/2014 2:26 PM (GMT 0)
and regarding band 41, I don't know why I didn't think to add this to my earlier post, but my son had only 39 IND and 41++.
The llmd said she thought lyme, but my husband wanted a second opinion (he's been a doubting Thomas through this all, but is better now at supporting) anyway, so we saw his pediatrician who consulted with an Infectious Disease Dr. in IA City (at the the University Hospital). I was afraid the ID Dr. would say no lyme, but to my surprise (and relief) the ID dr. said that he thought the results of the test were "very concerning" and to definitely treat my son for lyme.
And I remember the pediatrician said that was in regards to the band 41 results mostly. The pediatrician said the ID Dr. said something like "since that 41 is positive" and again, "very concerned with the test results".
Anyway, I know there can be controversy over band 41, but that was our experience with it.
Posted 5/10/2014 2:53 PM (GMT 0)
So, yesterday after waiting the whole day, the NP that interpreted the test never called me back. Grrrrrrrrrrrrrrrrr....I guess I shouldn't have expected anything different.

My son's pediatrician did call back though. She basically said they don't handle complicated stuff, esp. if there's no clear cut diagnose / symptoms. I was very appreciative of her honesty. I mean considering several times I was told that it's in my head, or I was too stressed, or think too much from those so-call doctors/specialists during the 2 and a half year for me to seek the right diagnosis. I think it's great that this pediatrician is just upfront on what they have or haven't the ability to do.

Anyway, she referred us to see Dr. D.K. in Fairfax, VA who is a pediatric ID. I'm trying to get more info on him, so if anyone have any info about his practice, please share. I mean I had an ID Dr who told me that all I needed would be 30 days of Doxy -- that is if I were infected with Lyme (yes, to him, no Lyme and he didn't test co-infections for me). So I'm on a fence about ID Drs at a moment.

However, if anyone has an experience with him, please share.

@stacestar I wish all the ID Drs. are like the one you had.

One of my husband's offices happens to be right down the blocks from Dr. J. in DC, so I asked him walk over there and talked to them directly (the phone was often too busy) yesterday. We are supposed to call to talk to a NP there who treats kids on Monday, and we'll see if they can do any test ahead or they'll be able to fit us in earlier since right now the first available appointment is in June. *crossing fingers*

Have a Happy Mother Day/Weekend.
Posted 5/10/2014 3:21 PM (GMT 0)
so glad you talk to that NP on Monday! That's great news! Hopefully you can get in sooner than June (maybe a cancellation will come up), but if not, June will be here sooner than you know it, but rooting for earlier for you.

and, yes, I think we were very fortunate to have that particular ID Dr. look at my son's test. Of course, he did go on to say that three weeks of amoxicillin would take care of it, and then that's what our pediatrician recommended too. And, of course, that's not what we did (my son is now at week 12 abx and with a great new dr.) But at least he acknowledged the test results were indicating most likely lyme.


Again, glad to hear you can talk to that NP, and hoping for an appt. for you guys soon!
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