Guest Author: Lois Janish, Lyme Warrior and Caregiver
I’m going to post my son’s story for him as he has said it’s important to do to help sick children and their parents cope and hope. I hope you can share this and that it helps others. This is my boy’s heart.
Evan has congenital Lyme. It was passed to him in utero from me. I was undiagnosed for 23 years. My story is on FB as well but not the focus here. The point in mentioning it is just to address the transmission. The CDC has controversial info on this. They are saying it’s not probable mothers can pass it on yet also stating that mothers with Lyme should take antibiotics while pregnant so they do not pass it to their newborns. Hmmmmm. So which is it? Is it impossible to pass to newborns or are we supposed to take doxycycline so we don’t pass it to them? Most importantly let’s assume their most highlighted info is correct…we are all supposed to take doxycycline when we get pregnant if we have Lyme.
What happened to all of us pregnant mothers who didn’t know we had Lyme when we had our children?
I’ll tell you. Right here. Right now.
Evan was born with Lyme. Day one. Formed in Lyme if you will. He was born healthy. Very healthy. Usually not getting what his older sister had for a virus growing up hardly ever. Which is very “Lyme-ish” looking back. His immune system is in over drive all the time so it is constantly fighting off everything as he has been Lyme’s host since day one….of CONCEPTION …not birth. Let that sink in. As you can read from the CDC most kids born to mothers with Lyme are miscarried. So he is my miracle at the very least. And he may get mad and blush but we have called him “Evan from Heaven” since the day he was born.
Evan and I would often see my daughter with the flu, step throat, and fevers. We would say “keep it away from us we don’t want it” as a joke. She had the typical 2-3 illnesses each school year. Evan had perfect attendance (unless missing for a hunting trip or early spring break leave) and usually never got it. Often she required antibiotics and several times even steroids to kick the infection. He and I remained perfectly healthy. Our immune systems fired up 24/7.
He was prone to ear infections. Lots. He also was in the hospital for a few nights when he got rotovirus. The handful of times he got sick he got very sick. When his teeth came in ….very late….he was one year old with 2 teeth. The back molars came in with little to no enamel. He needed stainless steel crowns at age 10 or so. I remember the dentist looking at x-rays and saying “Hmmm. None of these new molars are right. You must have had a virus when you were pregnant with him”…those words didn’t ring true until this last July when suddenly all the dots connected and he was diagnosed. Just like they did with me and my Lyme diagnosis.
Evan always had extreme light sensitivity. He hated the beach. He hated reflection of light in the car. Always. “Can you turn off this lamp , that light is just too bright, why does that TV/my phone glare so much?” Same with noise. Everything is too loud all the time. We run a fan to sleep every single night. He began to have severe joint and muscle pain.” Mom can you rub my back? My legs? My arm?”…every single night for the last few years. “Mom can you just pop my joints in place, crack my knuckles, my toes, my hips. Do your Sports Medicine on me.” Growing pains . Except there was no growth.
He went from healthy growth chart to dropping like a rock. Down to 60%, 40%, 10%, to I don’t even know what he would register now.
He quit baseball after 8 years of playing. Boy Scouts after several years. Lost interest in hunting or anything that takes his energy. This past year all sleepovers with friends even stopped. “I want to go to their party and see them but just can’t stay up past 10.” Yet he was upbeat and positive. Happy and life loving. Funny. Really funny. So no, not depression. Slowly everything he did and loved he stopped doing with reluctance. That’s when I really paid attention. I recognized myself.
Nausea kicked in this past year. Severe. All day. Every day. Relentless. We tried meds you give chemo patients. Prescription antacids. Meds I don’t even know what their names were. They were liquid prayers that never gave us answers. With his warrior spirit he still eats. He said to me a few weeks ago when I was watching him eat and feeling so hopeful…”Well yeah. I have to force myself to eat or I will die.” In my story I told of the time my 4 year old asked if she would see me when I go to heaven because I was so sick…I thought those were the most heart wrenching words I would ever hear. Until his.
So he eats. All day every day. He eats eggs and sausage for breakfast. Sucks down gluten free pizzas for lunch (gluten free and dairy free to keep inflammation down the past 6 weeks) and eats boat loads of fruit and vegetables. High calorie good fats and oils. Sweet and sour chicken over brown rice and broccoli tonight which I bet he ate a pound of…and probably has a pound of coconut oil in it to plump him up. He’s unable to maintain weight. He’s losing weight.
That’s where we are.
Monday he begins his second round of treatment. We will keep you posted. His story is completely different than mine. My heart issues. Tumors. Heavy metals. Completely different than my nephew. Completely different than so many friends. So totally different than my own doctor when he was diagnosed. The Great Imitator…
My triumph over 23 years of my own battle was very short lived. I barely got my warrior cry out and celebrated the victory when this new war began. Parents…you know your child. Better than anyone in the world. Listen to them. Be their advocate. Believe in them.
Everyone said my battle was for a reason. And the first three months post treatment I see it was to help so many of you. Countless. It was and is amazing to watch you all heal like I did. For that I am so grateful. But truth be told I’m looking at my reason sitting in my kitchen. He is handsome and bright. Quick and very witty. He gives me a full on smile even when he is 8 months into feeling like he has the flu every single day. He’s the one still holding doors for people, shopping for and bringing a pumpkin to his favorite teacher the first day of Fall, the one who asks about my friends’ troubles, wants to empty our pantry to the homeless and wonders how we can help YOU more. Ones not so lucky.
Really? I’ve been sick since the day he was born and saddened to remember what he grew up seeing along my journey. Plus he has been fighting his own battle. A sick feeling that makes every single hour of every single day a challenge. His parents divorced when he was 4. And he wants to help UNLUCKY ones. Which means he sees himself as lucky. Thankful. Appreciative. Positive. In spite of it all.
We don’t have an answer and happy ending right now. Not like my last story about MY journey. But we will. So it’s a story in the making. And maybe following him many of you can relate and be hopeful within his struggles instead of my miraculous recovery. Maybe Evan is someone you can relate to more than me. He is in your boat right now. We are searching for the answer. Just like you. I believe in our process, treatment, and doctors. He and I have met so many of you who recovered because of this treatment.
So many ask me what the secret is. Why didn’t I crack? Take antidepressants? Anti anxiety meds? Why wasn’t I on pain meds? Any meds at all for 23 years????!! Why not angry and bitter? Why didn’t I just give up? I guess I had something bigger down the line to care for and be strong for. I just didn’t know it. Thank God!!! Lol! The truth is it doesn’t matter how I did it or how Evan will do it. It matters that YOU WILL do it. And you will. Hour by hour. That’s my motto. Not even day by day. And you will just keep finding people like us to help you along the way. Just the way we found people to lift us. Because that’s just how God works.
This is my amazing boy. More to follow…