First of all, let me preface this with saying that I’m grateful for doctors. This is in no way meant to slander doctors; it is meant to show you that you and you alone must advocate for your family. Sometimes only a very specific doctor or person can help you on your journey. You’ll understand where I’m coming from when you hear my story.
I was in the best health of my life, happily married, and eager to start a family of our own. I was visiting my parents in Texas and noticed I had a fever, felt like I had the flu but no congestion or cough, and my eyes were completely bloodshot and hurt terribly. As I went back home a few days later, I started having insane numbness and tingling on the whole right side of my body. I had awful night sweats and felt so much pressure in my head and body that I thought I might explode. I was terrified. I had no idea what was happening to me but knew it wasn’t good. Then I realized I had two blood marks on my hip like a bite of some sort. ER doctors did cat scans, MRIs…nothing. They asked if I had a bull’s-eye rash…I did not so they did not test me for Lyme at that time!
Did you know that many people do not have the traditional bull’s-eye rash with Lyme and many like myself, never even get a rash at all! Clearly, that is not widely known; I believe we are often the ones who go undiagnosed or misdiagnosed. I had one urgent care doctor tell me it was probably just anxiety and that I should ice my numbness and rest!
Fast forward five and a half years, it is Lyme and co-infections. Sadly, now I have given it to both of my children congenitally.
When my son was two, I trusted the doctor and gave him the vaccines for that age. I did not realize that his underlying infections and genetic mutation made it very unsafe for him at the time. I did not even realize he had this mutation or any infections. His immune system slowly went downhill from there. He got sick more often, reacted to many things he didn’t beforehand. He had these weird breathing reactions to things in the night, gasping for air. No one could ever figure this out for me. I figured out a lot of his triggers which spaced out the episodes instead of them happening every night. Now, I realize it was his immune system misfiring.
Then, we unknowingly lived in a rental with mold in it while our house was being built. Mold is kryptonite for people with Lyme. It flares it significantly. We both had issues but one day it came to a breaking point. I started having chest tightness and couldn’t breathe. My head felt drugged. My son started having tics uncontrollably and a huge change in his behavior. He couldn’t eat, was extremely emotional, defiant, and had these huge OCD meltdowns. This was all very out of character for him and coincided with the tics. I started looking into it and found out about something called PANDAS/PANS. I found a doctor who dealt with this and we tested for infections. Strep in the blood was negative so it had to be PANS but we hadn’t found the trigger yet. She told me that some of the triggers were mold, Lyme, and many other things.
My son woke up crying so many times one night so I started looking up Lyme to see if I could do something to help him. It was then I discovered roughly 30% of people do not get a bull’s-eye rash, Lyme imitates MS symptoms and it can be passed congenitally (I got pregnant with him within three months of the bite and was incapacitated for two of those months). My mom has MS so everyone attributed all of my symptoms to that.
I called his doctor Monday morning and asked for a Lyme test. We waited for a month for those results. We had already been dealing with this heartbreaking neurologic autoimmune condition for a month prior to this realization. He was Lyme positive. After a month of treatment, he started eating a little more, having less tics and having more normal behavior for him.
We have a slew of problems now but we finally figured out the root cause and are slowly getting better. We wouldn’t have figured this out if I hadn’t done my due diligence, known who could help us and pushed for answers. We went to a plethora of doctors who never figured this out for years. My point of all of this is don’t take one person’s word as truth. Do your research. You know yourself and your kids better than anyone else. Trust your gut. You know when something is not right.
I have been nervous to share our story because sadly Lyme and PANS are both controversial in the medical world. This is solely because they don’t have enough years worth of research. I can tell you that they are very real and we need help. Thankfully, there are experts who only deal with Lyme and can help us.
Here’s where I will get hate messages…
I believe that my son developed PANS because of his two year old vaccines. He had a genetic defect where he can’t detox much at all combined with chronic infections which his body was already working hard to fight and vaccines were just the straw that broke the camel’s back. I now know that those two things made him way more likely to have an adverse reaction. It was the perfect storm. He now has damage to his basal ganglia and his immune system attacks his brain when he’s flaring. Did you know that the vast majority of autistic kids have the same genetic mutation and issues detoxing? Also, most of them have chronic infections they struggle with? PANS gets better when treating the infection and supporting the detox pathway.
My question is why don’t we do genetic testing before vaccines? Or a blood infections panel? Those would be easy to do to prevent our children from having lifelong chronic illnesses.
My point of this whole piece is don’t just blindly trust your doctor, not just in vaccines but all things. Ask questions. Do research before you go. Don’t be filled with regret for not doing so and paying the price. You have to know enough about what’s wrong with you to find a doctor who can help you.
My hope in sharing our very personal story is that I could help prevent one person from ending up in our shoes or help someone put the puzzle pieces together for their health issues. If I help one person, that will be worth all the hate mail I may or may not get sharing our story.
Health Drama Mama 