When someone has been healthy all their lives they can’t possibly understand what it’s like to be sick 24/7. It feels like every day is a new hurdle to climb, a new symptom to try and manage, and a new explanation to give to the world. I don’t have the time nor the energy to explain to each person indiIvidually what I go through on a daily basis, or what this disease does to people so I wanted to take this blog as an opportunity to inform everyone. This isn’t something that comes easy for me. I have worked my whole life to put up a wall and an image that I am healthy and fine. I don’t want to accept that something is wrong that’s bigger then me. But there comes a time in everyone’s life when you have to face your fears. This is me, I can’t run away from it so I might as well embrace it. I hope that this blog brings understanding to those who love me, and most importantly teaches everybody something about chronic Lyme disease and their co-infections.
All my close friends who know me, also know I have been rather sickly the past couple years of my life. I’ve seen a countless number of doctors for a countless number of things that we thought was wrong. I can’t begin to list the number of wrong diagnoses I have received in my lifetime. When I got a diagnosis I always had a gut feeling it was not correct because all of the dots never lined up. As the years went on I only felt worst. I started cancelling activities, going home early from things, and just being mum about it all. Mostly I didn’t open up because I myself was terrified of what was happening to me. My gallbladder stopped functioning, I had night sweats, tremors, digestive issues, kidney problems, low immune system, migraines, chronic fatigue, low blood pressure, heart palpitations, body cramps, memory loss, cognitive functioning loss, foggy thinking, hypersensitivity to motion, sound, taste, smell, hypoglycemia, unexplained allergies, dizziness, fainting… the list goes on. It feels like every day I wake up and there is a new symptom that inhibits me from completing tasks I needed to do that day.
I kept thinking to myself, ‘please God just give me my life back.’ You never know the price of your health until you slowly feel yourself losing that grasp. As I continued my journey doctor to doctor I kept discovering terrifying things going on in my body, but no answer as to the cause. We discovered a portion of my brain which looks and acts like a brain damaged patient. My doctor asked me countless times if I had been in any serious accidents to cause something like this, but I had not. It was something inside of me, slowly eating away to cause such damage. This wasn’t just something I saw on a piece of paper, it was something I lived every day. I felt my symptoms growing with each passing month that we didn’t have an answer. Going from a 3.8 GPA in college to barely passing classes at FIDM was a shock I wasn’t quite ready for. I couldn’t keep up with the work, and it felt like my brain was literally giving up on me. I have good days and I have bad days. In fact I have no idea how I’ll even feel 5 hours from now, let alone the next day. I have learned to live my life in the moment. If I can get something done when I’m feeling good then I run with it, and I have learned to accept that if I wake up and I’m having a bad day I have to listen to my body and rest. Even when I felt my worst I’ve never lost my spirit. I accepted that this was my life & I’m going to make the best of it…It’s what you have to do.
The months passed by when by a miracle my mom had found a doctor who took me seriously. He ran a complete battery of exams on me. He wasn’t going to give up until he found a cause. I remember sitting in his office on my third visit almost all out of hope as he physically showed me my diagnosis. He pulled out a piece of paper, which was a picture of a bloodstain taken. There it was in clear daylight, hundreds of parasites & bacteria inside of me. It hit me like a ton of bricks. “This? This is what has made my life a living hell for years? This small thing?” It appeared to be something so simple at first. I finally have an answer, this is great! It wasn’t until I sat down and learned more about this disease that I learned the struggles to come and the journey I have ahead.
Chronic Lyme disease is real & can be debilitating, if not deadly. When left untreated, thousands of people yearly go into a late stage of this disease that is a struggle to treat. Many people go into remission, some people are never cured, and others improve just to get worst again. It’s a horrible disease that is undermined by much of the population. Medically stating, if you go by the book, the book says Lyme disease comes in 1 stage. You get bit by a tick, you get the disease, you go on a 14 day treatment of antibiotics and boom you’re cured. This is completely false. There has been a heated debate in the Lyme community about that protocol. There are thousands upon thousands of people who are living breathing examples of chronic Lyme, including myself. The Lyme is present in every square inch of their bodies by the time it’s found. It spreads to the central nervous system, every organ, every tissue… everything. Once it has hit that stage the only hope as a patient is years of antibiotic therapy.
I have no recollection of when I could have possibly been bit by a tick to contract Lyme. In fact, most people don’t remember the bite. A common thing with Lyme disease is having co-infections. The tick itself carries Lyme but it also carries other diseases. In my case I have a few co-infection like this, which takes a strategic plan of treatment. You have to kill all of the diseases, which at this point have spread throughout my entire body, but in the process you have to be gentle with the patient (aka me)!
Treatment commonly takes anywhere from a few months, to years, or longer depending on how your body reacts. Its a tough harsh treatment that will make me weaker before I'm stronger, but I am ready. I consider myself to be an extremely lucky person because I have two amazing parents who fought for me every day until we got an answer. Countless phone calls, countless hours of research & a lot of determination are what got me a diagnosis. I can’t imagine how many people are out there who suffer their whole lives being misdiagnosed and passed around in circles without ever finding a cure.
The biggest problem with Lyme is the fact it is a taboo subject for so many doctors. They don't want to tackle it or deal with it & it's commonly overlooked. In fact, because of the strict guidelines on how you are "supposed" to treat Lyme, many doctors who are giving patients lengthy antibiotic therapy have got their medical license revoked. Not to mention this route of treatment (which has saved thousands of lives) isn't covered by health insurance plans. This is why countless MD's ignore Lyme and don't bother with it. Its the sad politics of this disease which has gotten me here today. I could have been diagnosed years ago had this been a common (health insurance covered) disease. I want to tell my story so everyone who reads this can be educated to help themselves, someone they love, or anyone in the future.
This was lengthy, but if you got this far then I thank you. Below are some links to more information about Chronic Lyme and signs of the disease. If you believe you or a loved one is showing any symptoms please find a LLMD (lyme literate MD) immediately and get checked. The sooner you detect it, the sooner you will get your life back. The common Western Blot test for Lyme in NOT always a conclusive answer. There are several blood tests for Lyme, and anyone suffering symptoms need to make sure they get every single one done.
These symptoms are rather broad, but having 20 or more of the symptoms warrants a trip to the doctor to get tested