Pediatric Lyme - UPDATE

I can understand someone in pain needing to keep active. It might be a good idea to have her thyroid and adrenals tested in addition to other tests you're going to do. How well does she sleep at night and what is her diet like? Also, how many hours does she sleep and is she up and down throughout the night?

Mom's have good intuition, so follow your hunches. Nobody knows her better than you. You're a great mom for looking into what is causing her issues. I hope you'll get some answers.

It's no problem how much you wrote, so don't worry about it. It's good for you to talk about it since it has to be wearing on you. Keep on searching!

Yes, BDL, I was wondering if it might feel like restless leg, but that she just didn't know how to describe it, so that's interesting that that's how an adult describes it.

GardenPeace - thank you for the suggestions for having her thyroid and adrenals tested, I will ask my LLND about that. Now that you mention it, my LLND did say it's possible her adrenals are totally fried, or something to that effect.

As for sleep, she has a very hard time winding down and actually falling asleep, but once she's out, she's out.

In terms of diet, we buy organic as much as possible, she doesn't eat a lot of junk or dyes, but her diet is nowhere close to where I want it to be (gluten / dairy free, refined sugar free, etc.), it's just so hard with a kid. She also will go to friends' houses and gorge herself on junk food to the point that she'll make herself sick (which, again, I think is an impulse control issue), but I have to talk to her and the parents all the time, and it's really embarrassing to hear that she was at a friend's and asking for snacks and instead of the cheese she's offered, she'll ask for cookies or something sugary.

Rowingmom, I totally understand where you're coming from! My daughter was the same way as an infant. She was mobile pretty early on (she climbed out her crib (on the lowest mattress setting) at 11 months!) and once she started crawling, she never stopped. My dreams of bringing my baby into bed in the early mornings for some snuggles were never realized (until my other kids) because as soon as she woke up in the mornings, she was off like a shot.

If her adrenals are shot, she would have less energy, so either of the 2 glands would have to be in the high range to make her too energetic. I'm tired most of the time because my adrenals and thyroid are low, but sometimes I think my adrenals put out too much, trying to compensate for the lack and I can feel a little hyper. It's a delicate balance.

She may be an active child by nature, but how you describe her sounds like there are other things impacting her.

I've heard of some kids getting that way from immunizations. Sugar can contribute too, as you're aware of I'm sure. It is hard to keep them off all the bad things all the time.

Keep us posted.

Thanks everyone!

Simela - I will try the removal of stimulation an hour before bed. I haven't thought of that, but we really encourage her to read in her bed before going to sleep to help her calm down and get tired.

I hadn't thought I had Lyme long enough to infect her in vitro, mostly because I was fine (I thought) until my symptoms came on with a vengeance in 2013. But a friend of mine with Lyme just had her entire family tested and they were all positive. Her oldest is 10 I think, and she didn't realize she'd been infected that long. I'm now questioning whether I might have given it to her, especially since she hasn't been any other way (aside from when she was a newborn, lol).

GardenPeace - thank you for the clarification. I was visiting my LLND because a new homeopathic I started was affecting me pretty badly, so I'm sure I misunderstood her. But yes, it does make more sense that her adrenal function is too high instead of too low if she's so active and energetic.

Yes, I try and limit sugar as much as possible, but strangely, I have never noticed a change in her energy level after sugar. I can't tell you how many people have commented to me if they see as the ice cream store: "wow, the sugar is kicking in". The problem is that she was the exact same way BEFORE the sugar. :-D

Traveler - I agree with you. If I'd listened to all the doctors who told me I was perfectly healthy, I wouldn't have ever figured out that I have Lyme. I hate to think that she may be suffering without even knowing that what she's experiencing isn't normal, and I hate even more to think I might have given it to her. But I do think it's worth getting her tested.

Hi Garden,

No, I don't mind sharing. I have been taking Chinese Lightning Pearls (1 @ 2x / day), MC-BAR-1 (9 drops @ 2x / day every other day) and Itires (5 drops @ 2x / day, every other day). My LLND decided to start targeting my Babesia, which we think is my biggest problem, so she started me on 1 drop 2x / day and told me to increase it very slowly because it would really affect me if I went too fast. So I took 1 drop 2x / day every other for a week, then upped it to 2 drops. I did that once before I reacted. I got shortness of breath, severe anxiety, insomnia, heart palpitations and noise sensitivity and some of dizziness / off-balance issues came back as well. Being around my kids and their noise feels like I was listening to nails on a chalkboard. I stopped taking it immediately to allow myself to recover quickly so I could get back to the one drop, but it's been 3 weeks and I still can't seem to get back to baseline. I pretty much feel like I'm about to have a nervous breakdown at any moment. Any sudden noise will make me jump and cause my anxiety to spike like I'm facing a dangerous situation.

My LLND says I have reacted pretty strongly to all of the herbs and homeopathy so far, so it might not be the best choice for me. She also says it's sounding more and more like I have methylation issues (which from what I understood is related to detoxing?). So she wants to step back, add more system supporting herbs and supplements and revisit in a month. I'm also to change my diet (even more) to the Wahl's protocol.

If your dh was a forester, and you were active campers, that's likely where you got it. I've never been bitten by tick either (that I know of), but I'm not even an active hiker / camper anymore. I was in my teens, twenties and into my thirties, which I guess is when I could've gotten it, I just was so positive that I got infected in the months before my symptoms came on. But maybe I've just had a latent infection that was waiting for the opportune time.

J:

I don't know when I contacted Lyme either. I didn't have any symptoms except for some very minor issues that really just happened a few times. I was shocked I tested +! A couple of times I couldn't get up for a few seconds and another time I got blurry vision and then another time my hand hurt for a few seconds and I couldn't open the door. This is about the same time my daughter started screaming at night of leg pain and about same time we went camping deep in the woods, wooded heels etc. I never realized until later what may have happened. I think that's when we got bitten. Since then I gave birth to 2 children, perfectly normal, no symptoms. But my 5 yr old got bitten in the school park. Birds really can bring ticks everywhere. I pulled the tick from behind her ear last fall. It wasn't engorged but it did break, and a drop of blood came out so it definately was in contact with her blood. It was large which makes it more likely it was infected, since it has been around for a while.

My daughter was ok until she got 7 vaccines (3 shots). Within a week she was in a lot of pain, vertigo etc. She is recovering very well with the Buhner protocol for Lyme and barto although I do not follow it to the letter and I made some changes and left a few things out. The last symptom is bedwetting because she wakes up in the middle of the night and doesn't make it to the bathroom on time. BUT is getting better--only one time in the past 7 days :). She made the most progress out of my 3 kids but she has been infected the least time. She is up and about running like a normal kid with almost no problems, but she is still dealing with some residual pain eg. A minute total per day. Pretty good :)

My son will start with abx because he has too many symptoms and while Buhner helped, he is not recovering quickly enough and more damage may occur in the mean time.

My 9 yr old I suspect has been infected the longest but she is the toughest kid I've met and I know she will beat it. We'll try Buhner with some additional items from dr Klinghardt protocol and see how it goes before jumping to abx. She did her a lot so I dropped the doses to what I give my 5 yr old and she is making some improvement.

I think you are doing the right thing to look into this. Rowing mom helped me with Buhner protocol and I'm glad she did. My llmd said that since my 5 yr old is improving on Buhner "maybe that all she needs", so I feel comfortable with what I am doing.

Post Edited (Simela1) : 4/25/2015 1:23:18 PM (GMT-6)

Rowingmom - I'm so new to this whole Lyme world, I'm hoping my LLND is knowledgeable. Her clinic was referred to me from a friend who's had Lyme for 20 years and has seen the most well-known LLMD's and LLND's in the area and she really loves this clinic, so I trusted her.

Yes, the 9 cups of veggies is daunting, I haven't read the book in its entirety, so I didn't know they have to be raw!

Simela - I'm so sorry your kids are dealing with this - I know it will crush me (at least initially) if I gave it to them. But it sounds like they are doing relatively well with what you're doing, so that's good to hear.

Garden Peace - I thought the MC-BAR and MC-BAB were also homeopathics. But who knows? I just take what my LLND tells me to, lol.

We live in a suburban neighborhood and at first I thought I must have gotten bitten in my yard because my next door neighbor "feeds the birds" along our fence line (aka., drops bird seed by the bucketful all over the ground, which attracts birds, squirrels, possum, rats, mice, deer, and raccoons, many of which traverse our property to get to hers, or are just hanging out in our backyard. But if my 8 year old has it, I would think it was from birth, which would mean I *didn't* pick it up in my yard. But I'd just worry that we'd get bitten again from the wildlife kingdom going on next door.

Homeopathy is a form of treatment that is is very different than herbal medicine in both it's preparation and use. Many people get confused about it, thinking it's just another herbal. I don't think the 2 you mentioned were homeopathic meds.

MY daughter was given the Chinese herbal one at a time. I don't know if that is typical or not, but at least she knew thunder helped and lightening didn't.