The Nightmare Continues...

I received some devastating news last month that I'm finally ready to share. It's no secret that this Lyme life has been an utter nightmare. And my biggest fear through it all, has been the possibility of passing the disease to my daughter. In large part, that's why we waited so long to even have a child. And why I debated whether or not to breastfeed. I knew the likelihood of passing was very high, and it was evident that a large percentage of mom's in my Lyme FB groups also have kids battling the illness.

We did some muscle testing with her very early on at Lymestop, which showed up negative. But in the back of my mind, I knew how unreliable that testing could be - particularly later on after my own negative experiences with that specific doctor. So I recently decided to do the same bioenergetic testing for my daughter that I did earlier this year, by sending in a hair sample and cheek swab.

And, well, I'm sure you know where this is going....she tested positive for many of the same things I have, including Lyme and several of the co-infections, including the 2 that have given me the most problems:

I spent the first week after discovery bawling my eyes out. My doctor tells me that I can't let guilt get the best of me, but that's easier said than done. As parents, we do everything we can to protect our babies. And now, not only has she been harmed, but it's come directly from my own body. I'm sure I'll have plenty of platitudes coming my way, but not much can be said to quell my feelings of dismay. Yes, I gave her life, and yes this outcome was mostly out of my control. But still.

I've endured 14 long years of pure hell that has completely altered my life, with no end in sight. I haven't really been living, just simply surviving. Can you imagine "living" like that, and then being told that your daughter may have to go through that as well, and that you're the reason? It's a tough pill to swallow. I would give almost anything to be rid of this illness myself, but I would give my life to take it away from her.

Like I said, deep down, I think I knew in my gut that she's had it all along. We've had some major struggles with her throughout her short four years, though some of it can be common for children - like chronic ear infections - so I think I was living through a bit of denial through it all.

One of the toughest trials was the first 6 months of her life, when she would hardly EVER let us put her down. I spent my entire maternity leave doing nothing but hold her. My husband and I had to take shifts through the night to stay up and let her sleep on our chests...it was beyond miserable (aside from the joy of baby snuggles)! We had a bassinet that she slept in all of one night. I remember talking with a gal from Tennessee who stumbled across my blog; not only was her Lyme story so similar to mine, but her baby was enduring the same exact challenges. To this day, Brynn still has sleep issues - she's never been a napper (ugh!), and if we don't give her melatonin, she's awake until 11 or 12 at night. Sometimes even with the sleep aid, she's awake that long.

The other really tough tribulation has been her stomach issues. Almost daily tummy pain and poo issues have made for constant misery. I know this can be a common occurrence for children as well, but I also read recently that Lyme often first presents itself in children through stomach issues. Which is what made me decide to finally get her tested.

I read the other day that 40% of new Lyme cases are children. I think that's the scariest thing about this disease - that it can be passed to children and spouses. There are so many people out there who have no idea they even have Lyme, and are also unknowingly spreading it. Talk about a real pandemic.

I also found this image relating to children with Lyme. It breaks my heart to think about kids having to go through all of this crap...it's certainly bad enough as an adult. We've definitely noticed some anger issues with Brynn, that I've often thought could likely be Lyme rage. Thankfully, we've been lucky enough to not have to deal with any of these other issues...yet at least. She's very social and is quite advanced for her age. I had a proud mom moment at her 4 year check-up last November, when we learned that she was testing at the 6 year old level! I'm really hoping we can extinguish a lot of this crud before they even become issues for us.

On a positive note, it is a relief to finally know for sure that she has Lyme, rather than constantly wondering. And now we can start treating her, rather than waiting years down the road where it will only get worse. My provider assures me that kids are resilient and much easier to treat (and quicker to heal). Of course, as we know, there is no cure for Lyme and it's something she will always deal with, but I'm really hoping and praying that we can get her into remission and that the treatment will be relatively bearable.

Our first step was to go gluten free, as that wreaks havoc on the gut, and is very bad for Lyme. Brynn LOVES her glutenous foods, so it's certainly been an interesting transition. Thankfully there are so many GF products out there these days....though that doesn't mean they are good enough for our somewhat picky eater!

Thankfully, my little princess loves to be like mommy - so when I told her that she gets to do a special GF diet like I do - she was all about it. Hopefully that lasts. On the downside, our grocery bill has now doubled. It's been a lot of trial and error for brands and products so far, and I'm trying hard not to lose it every time she resists and essentially throws food and $$ down the drain. One thing we’ve learned so far - she will not eat GF bread. And honestly, I don't blame her - it's not great. There goes the easy PB&J or grilled cheese!

Next, we are implementing gentle homeopathic medicine into her daily life. Seeing as how she's been resisting even taking the fiber gummies (that look like candy) I wasn't too sure how this was going to go! But we started the drops this weekend - and she was totally on board with taking them at the same time as mommy. We've designated a Seahawks shot glass as her special medicine cup; mixed with a little "juice" (sugar free gatorade) and she thinks it's "yummy"! Though tomorrow we integrate a super greens one that isn't clear, and likely has more funky taste to it, and that may not go over well.

Her stomach aches have gotten much worse over the last week, so I'm nervous about how this is going to go. With all that said, we could sure use thoughts and prayers. Now treating 2/3rds of our family for this illness is going to be overwhelming, challenging and so freaking expensive.