3-yr-old nearing remission - have we been thorough enough?

Hi,

This is my first post, so "hello" to everyone! I am a 33-yr-old mom who was bitten by a tick in March 2012. I had no symptoms but believed I didn't have any worries, because the tick wasn't attached more than 2 hrs and I had no rash. I breastfed my 2-yr-old once a morning then, for 6 more weeks, until I suddenly became very ill.

At that time I connected the dots, discovered the realities of Lyme, and stopped breastfeeding. It took about 4 days from onset of symptoms to do this, but it was too late. My daughter became symptomatic (fevers, joint pain and GI upset) about a week after my symptoms began.

That was late April 2012. She has been on abx since then (first amoxicillin, then omnicef + azithromycin). We both see an LLMD (a member of ILADS) in Florida. She had an Igenex positive WB in June.

Our LLMD has said from the beginning that he's not a pediatric specialist. So he sent us to CT to see Dr Jones, which we did in September. There was a lot of info from Dr Jones, but no recommendation for changing her protocol. He just said to continue omnicef + azithromycin and wait for 2 months no symptoms.

Well, she has been symptom-free since mid-September... except last Monday when she had buzzing in her brain and a "scrambled" feeling that came on only due to a 102 fever from a cold.

Our Florida LLMD has not heard about that buzzing issue yet, as we will see him on January 2. But at the last appt, he has said she is ready to end abx in a staggered way (zithro on 12/31 and omnicef on 1/31) and then a lot of tests four weeks later for all infections.

My questions about all this -

We haven't touched her CNS with any meds and her naturopath says the Lyme is living mostly in her head. What can be done about this? Her LLMD shrugs at this question and says only a few pediatric drs have treated such young ones with an IV, and then it's for severe cases.

We also haven't tried to break up biofilms or cysts, though she did take GSE (grapefruit seed extract) for a few months over the summer. I have options for this like lumbrokinase, but her dr warns against starting that as it can create a big die-off, release metals, etc.

I am hoping to connect with other parents who have experience with this. For myself, I am feeling well and confident I will get to remission. But I am very worried we are cutting things off prematurely for her, and/or not tackling every facet of her infection.

Thanks for reading this (long) post :)

Thanks Traveler. I have received treatment since mid-April and have been on abx since then. I go to the same LLMD my daughter does. My LLMD says I have between 6 & 12 months of abx left, and I have been symptom-free for 3 weeks at a time, multiple times.

I do wonder if those who have kids in remission have a "maintenance plan" to support the immune system etc, and I wonder what that plan might look like. We are crafting one here, but unsure if we are doing the right supplements and/or enough of them.

I am looking at Buhner's site, just ordered his book. Thanks again!

Bumping this up... my daughter has no more azithromycin as of 12/31, and we have an appt with her LLMD on January 2.

I would love to hear anyone's experience with protocols for kids, especially neuro Lyme, cysts and bio-films.

I also need tips for a "maintenance plan" while in remission.

I don't think we are allowed to post doctor's names on this forum, but I am considering a second opinion from Dr C (female). We are on her waiting list and expect to be called in March.

Hi justascarf2,

Thanks so much for your insight. It's such a tough thing to handle when they are little. My daughter will be 4 in April. She had fevers first, and joint pain. She had air hunger a bit, when starting abx and after having been infected about 2 months. She would just tell me what she felt - "Mom, my knee hurts", "Mom, my heart hurts", or her back, things like that. It was the frequency and the fevers that told me, and then a positive WB from Igenex. She had 3-4 fevers over about 3 months. Totally not normal for her... I think she'd had one fever ever, maybe two before that.

Her other symptom was GI pain (no vomiting or other symptoms, just "my tummy hurts"). That one was the last one to go, and could have been caused by the abx killing off the good bacteria in her tummy despite use of probiotics and diflucan.

The more recent concern I have is that we haven't tackled the neuro part (which would require IV) or the cysts/biofilms. When she had a high fever from a cold about 3 weeks ago, she said her head felt "swirly" and her "brain was messed up". That concerns me.

It's also very difficult to know how to handle a child with Lyme who may have it from birth. There's no "normal" in that case. I wonder too how your doctor can rationalize that you have it, but your daughter does not. That doesn't make sense to me. Has she had an Advanced Labs culture?

Hi JustAScarf2,

Now that I am reading your description of her, I can see why the doctor doesn't want to treat. So much of treating Lyme (or not) is based on clinical diagnosis (i.e. not by test but by symptoms). And if she has lots of energy and no complaints of pain, that sounds really good.

I have read similar stories with kids whose doctors won't want to "wake a sleeping giant" when the kids have exposure but are asymptomatic. Such a tough call. I don't know what to do in our case either.

I will be seeing our LLMD on Wednesday. I hope to get a maintenance plan written up with him and/or prolonged abx for her due to her recent symptoms.