Success Story: Grace Overcame Lyme Disease and Alice in Wonderland Syndrome

I’m helping my daughter Grace heal from Lyme disease and its symptoms and there is hope.

Grace is my first daughter and when she was born she was a hundred percent neurotypical, healthy in every way, and we were just delighted. We moved to Long Island, New York where my family is and within a few years of living an outdoor lifestyle, she was bitten by many ticks.

Symptoms Appeared

When she was about three or four, we started to notice some not so normal symptoms that I’d never dealt with as a child and I didn’t expect.

The first was she would wash her hands in the winter and her wrists would get wet, and then she would break out in incredibly bad eczema. Anywhere she was damp, she was getting eczema, whether it was her collar or after a bath from her jammies, a wet pillow, like just from like wet hair.

She was getting eczema and we treated it, you know, in any way we could, but it wouldn’t go away.

Then Grace Asked Some Odd Questions

Mommy, why sometimes when you look at your hand, it looks so far away, but then you can touch your knee. I’ve never I don’t even know what she was talking about. She’s five years old.

Another night in the evening, she said, “Mommy, why are you so stretched out and so tall? It’s like your head is so high up in the air.” And I said, “That’s odd.”

A Diagnosis

She can catch and throw a ball. She can skip. She can run. She can climb. She’s happy. She isn’t showing anything, but there’s this weird thing where she sees stuff out of proportion.

The pediatrician said, “I have no idea.” She did research, and she discovered a very rare disease called Alice in Wonderland well, not disease, syndrome that has no cure. Essentially, your perspective, the way your eye speaks to your brain is out of whack.

Lyme Was the Culprit

Now prior to, her coming to me with this, she sent me to have her vision looked at. She has 20-20 vision She sent me to get an EEG to look to make sure there wasn’t anything like a tumor.

Both of those came back fine. We did also go for an MRI and everything came back fine. Her brain is normal. The problem was the way her eye was communicating to her brain, which is just nerves, synapses, and they were getting all confused.

The way that Lyme works is that it does eat away at the connective tissue, not tissue, but the connective coverings on the nerves and how they connect. So people end up with like arthritis in their joints and lower back pain.

Because Lyme likes to eat away at the protective bits around the nerves. Everybody in my family who grew up with Lyme, I have Lyme as well, ended up with arthritis in their sixties and fifties.

She’s six years old, five years old, and she’s just bumping into everything.

Time to Move

That was when we decided to move. We moved from Long Island, New York, and we we sold our home, bought a camper, and renovated it and bought a big truck and, just started driving. We were planning on going to Oregon, and we made it as far as Colorado Springs, realized that the tick population was down, the homeschooling population was up, and we were like, all right, that’s where we stayed.

Beginning Treatment

I, at this time, had been following Doctor Rawls and really wanting to be able to afford his supplements. But they’re very expensive for us as a young family at that time. I decided before I put my daughter on it, would put myself on it. My sleep improved. My brain fog, like, which I thought was just part of motherhood improved. My ability to multitask improved.

In general, I was feeling more optimistic, one, because we’d moved and we could be outside again. And two, because I was starting to feel like my immune system was I just felt better. I said, all right, I’m gonna try this for my kids.

They Went Slowly

I started with like a sixth of a dose that she should have. I was popping open the little capsules and pouring out a little powder and putting it in a new capsule. And so I was very careful. We upped the dose to, like, a third of a dose for their weight and kept at it.

If I saw anything like grumpiness or agitation, it’s not like they could explain to me what they were really going through that well. I just pulled back a few days and let them rest and drink, gave them water and, you know, lots of hydration and just let them flush their body out, Epsom salt baths and things like that. We just, you know, slowly made it through. It took a long time to make it through all the the whole kit.

Many, many, many months of those little pills sitting on their napkin next to their breakfast, lunch, and dinner. We also, during that time, changed our lifestyle.

Lots of Sleep and Keeping It Simple

Sometimes they’d sleep ten, twelve hours at night, and I didn’t wake them.  There’s nothing wrong with waking your kids up in the morning, but they needed the sleep and the sleep was important. And then we just didn’t say yes to a lot of things like the extracurricular preschool stuff and the event here and the opportunity here for horseback riding or whatever it was, soccer.

Outdoors and Barefort

That restful lifestyle that we chose, being in the sunshine, being outdoors, and the kids also just totally rejected shoes. So there’s something to be said about grounding. They were barefoot unless it was under thirty degrees out. I’m not kidding. If it was forty five degrees out, they were barefoot. I think it was really good for them just as far as the healing journey.

Grace Healed

Ten to twelve years old, fully recovered, living a normal life. She’s just as a happy free child. She is a natural little leader, socialite with her friends, so outgoing, and like a little dreamer. “Mommy, can we do this today? Like, what do we remember you said, oh, yeah. Let’s try that. Can we go here, mommy? Like, every day. What are we doing today?” Just this happy, free child.

It is going to be a slow process, but don’t give up. There’s light at the end of the tunnel. There there’s hope along the way. You will see recovery. It’s not gonna be a quick fix.

Our Bodies Are Amazing

What without so despairing actually turned to, like, hopefulness. Our bodies want to heal. It changed my mindset about raising children of just this constant worrying to, our bodies wanna heal. God created our bodies to heal. Our bodies are amazing. We just need to support them and stop stressing.

Learn the Top Five Things Grace’s Mom Did

Click the button below to learn more about what Grace’s mom did to help her overcome her most-challenging symptoms.

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