May is Lyme Disease Awareness month and while most may not care to hear my story, if I can help just one person by sharing it, then everything I’ve been through will serve a larger purpose.
Many people living with Lyme are writing about their journey’s this month and I felt compelled to join them. Awareness is everything. Letting just ONE person know they aren’t alone could make all the difference. So if YOU are who I help in some strange way, thank you for letting me.
I will preface it all by saying that since my son Landon was very little, he has dealt with health issues of his own. From Epilepsy to Chronic Asthma that lead to being intubated in the ICU, there isn’t much he hasn’t faced and overcome. HE is who I have fought for. HE is who I have used as inspiration and strength and determination to beat this however I could. Though I know now that there is no cure, I remind myself that if Landon can live with “set backs” and NOT be set back, than so can I. So here’s MY story (as incredibly long as it is).
By the time I was diagnosed with Lyme Disease, it was estimated that it had already been in my body for 5 years or longer. Because it took so long to diagnose, the bacteria already had a chance to spread and effect different organs within my body.
The day I found out I had Lyme Disease, I also found out that it had caused an Autoimmune Disease of my Thyroid called Hashimoto’s. I also found out it was effecting my female hormones and ovaries (which lead to further testing to determine possible infertility). I also found out I had “thick blood” because the bacteria was hiding itself in my bloodstream. I had multiple vitamin deficiencies and a lovely parasitic infection called Babesia (a co-infection of Lyme).
So, why did it take so long? Lyme Disease isn’t a clear cut issue like most think it is. In fact, before I had to know about it, I naively thought it was a bullseye rash that lead to flu symptoms for a couple weeks before clearing up. I had no idea, and I find that most don’t, until they have to. I don’t remember being bit by the tick that made me sick and I never had a bullseye rash on my body.
A lot of people have asked me what my symptoms were or how I knew something wasn’t right. The problem is Lyme Disease likes to imitate other illnesses and diseases so it’s not easy to pinpoint. For instance, anxiety. I’ve had issues with anxiety since I was just a little girl. There are times it seems to give me problems daily and times I don’t have a problem for months. Anxiety has a mind of its own and it’s something I have finally learned to accept about myself.
But this anxiety was different. This anxiety was waking me up from a dead sleep. It was sneaking up on me sitting in traffic. It would hit me sitting at dinner, or in the middle of the grocery store. I remember multiple occasions where my poor boyfriend at the time had to deal with me shaking and crying and feeling like I was going to be sick. It was crippling, and embarrassing, and scary. It had happened like this before when I was much younger and I was terrified to go down that road again.
So I went to the doctor. He said it was just a bad case of anxiety and gave me more antidepressants. After some blood work he realized my Vitamin D level was low and gave me a prescription for that too. I was hopeful the combination would snap me out of it and I’d feel normal again.
But I didn’t. By now I was really depressed. I was stuck in a funk I couldn’t get out of. And I had no reason to be so sad. At that point in my life Landon’s health was finally getting better, I had a good job I was really excited about and I had a man by my side who loved me regardless of it all. But I wasn’t happy. I hated myself. I just wasn’t ME. And I didn’t know where me went. And I hadn’t been able to find her in way too long. I was always tired. I lost any drive or passion that I had.
I was gaining weight (which was only making me more depressed). I was moody. And did I mention I was tired? Because I was tired. It was bad. And no matter what anybody said, I couldn’t find my way out of the darkness.
Skip ahead a little ways and I was now pretty close to rock bottom. I had left the job I was so excited about almost a year prior and still hadn’t replaced it. I had lost the man I loved. I had gained even more weight. An embarrassing amount of weight that truly felt like it crept up on me over night. I was having issues with swelling in my extremities. My stomach was so bloated I looked pregnant. I was still having anxiety issues.
And now I was dealing with frequent migraines and dizzy spells. The only way to come close to explaining how I felt emotionally was as if I were grieving a death. I was incredibly sad. The kind of sadness that makes you feel like you can’t catch your breath. The kind of sadness that physically hurts your heart. I felt like I started losing pieces of myself so long ago and now, I just couldn’t find me in what was left at all.
So I went back to the doctor and I begged him to help me.
This time, by comparing my weight and realizing how much I had gained, he finally started listening. Anxiety wasn’t making me gain weight at a rapid pace. He assured me that something wasn’t right and promised me he’d find it. So I left with a lab order in my hand and a plan to rule out all the possibilities he had on the forefront of his mind – Fibromyalgia, Multiple Sclerosis, Cushings Disease, Lyme Disease, Hypothyroidism, and Lupus.
After two weeks, everything came back negative and I officially felt defeated.
By now my mom was already undergoing extensive treatment for Chronic Neurological Lyme Disease. At this point in time I had already seen her deteriorate and become a different person. She was no longer driving, she was forgetful, she was in excruciating pain, and some days she just didn’t wake up altogether. My mom wasn’t my mom at the time and my family had all been playing our own part in taking care of her.
At one of her appointments she mentioned my health issues and her doctor urged me to make an appointment with her. I never had before because a. I thought my doctor would find the culprit and b. This doctor was a Lyme Literate Doctor and didn’t take health insurance. Being desperate, I made the appointment anyway and had 24 tubes of blood drawn over the course of 2 days. It was those labs that diagnosed me.
So how was I positive for Lyme now but negative before? Because an alarmingly high rate of false negatives occur through generic Lyme testing. Because in order to find Lyme in its later stages, a specialized, highly sensitive test should be done and it’s expensive. But that test finally gave me an answer, I wasn’t just positive for Lyme Disease, I was positive on THREE DIFFERENT BANDS for Lyme Disease. By the time we found it, it was already Chronic and I had to start treatment right away.
Lyme Disease is many things. Symptoms you would never think a tick bite could cause. Everything I had been feeling made sense to the Doctor. The depression and mood swings, emotional instability and anxiety, dizziness and migraines. Weight gain and muscle aches. Daily nausea. Joint pain and exhaustion. All of it. It was all Lyme, that whole time.
So that’s the backstory of my diagnosis. Fighting it is another story. After a few months of oral treatment and repeat labs, my kidney function was starting to look bad. I also had a cancer scare due to a nodule on my thyroid and tumor marker levels being 4 times what they should have been. After an ultrasound and more blood work, I was told it wasn’t cancer – just a nice combination of Hashimoto’s and Lyme being extra mean.
The dizzy spells were the worse they had ever been. I was aching deep within my bones. My Vitamin D levels were now critically low and my B12 levels were quickly following suit. My energy level was practically non-existent and my hair was now falling out in large clumps. Aside from the physical aspect of it all, I was also quickly going broke as I had been paying over $500 per appointment to see the Lyme Literate Doctor. I knew I had to stay on treatment or I risked getting worse. But I also knew I needed to find another way.
One day, by what I am convinced was part of God’s divine intervention, I met a girl about my age who had also battled Chronic Lyme. She gave me hope because she was recovering, she had gone on to have a baby after everything her body went through and she was feeling great. Tragically, she lost her Dad to Lyme Carditis (when Lyme travels to your heart).
She knew my struggle in so many ways and she pointed me in the direction of her Doctor, an Infectious Disease Specialist at Fair Oaks Hospital – who took my insurance! I waited two months to see him and when I finally did, he took one look at my labs and said “How are you even functioning? You are really sick”.
The validation I felt in that moment was indescribable. For years now I had been stuck in this dark place I couldn’t understand or explain. But it wasn’t ME. I wasn’t lazy. Or lacking ambition. Or fat. I wasn’t pathetic. Or weak. Or a failure. I was sick.
I was sick with something I didn’t understand until I had to. And now I was going to fight to get better. I was going to fight to find myself buried underneath it all somewhere. I left with a surgical order to have a Central Line placed in my chest, a phone number for an Infusion company for my daily IV treatment and a card with information on it about the Home Health nursing agency who would be taking care of me at home.
Treatment had its ups and downs and I was told, more than once, that I would feel worse before I felt better. It was true. I would go to work and put on a brave face and try to smile through it all. But a couple times I couldn’t and I fell apart to those I was closest to. People would ask how I was and all I could say was “ok” because how was I truly supposed to answer that question? “Well, these meds make me want to vomit all over the floor and I’m so weak I could fall over but other than that…” I couldn’t say how I felt.
Some days I don’t even know if there were words to describe it. So I just put on a smile and pushed myself through those 12 hours until I could go home and crawl in bed, and then that’s where I’d be stuck for the next 24. It was like anything I did wore me out and exhausted me to the point that I didn’t have anything left. Treatment was rough and all I could do was pray that it was doing its job.
That was until I was told I could no longer receive treatment unless I paid 100% out of pocket for it. We are talking well over $1500 a week. I won’t even get into the financial issues or the lack of acknowledgment and support from the CDC because we would be here for days. But if any of you are interested in the craziness that surrounds Lyme Disease, all it takes is a google search and your head will spin.
There are thousands upon thousands of people all over the United States who are sick and not able to get help. They are sick and being pushed away because the “cheap, unreliable” Lyme test at the doctor’s office is coming back negative. Mine was negative and now look where I was. My mom’s was negative but two spinal taps showed the Lyme bacteria in her cerebrospinal fluid. It is a systemic infection that is smarter than modern medicine. It is scary and it is killing people. Nevertheless, the CDC is refusing to recognize it and this keeps insurance companies from paying for treatment. So mine stopped.
Where do I stand now? I feel better, but some days can be tough. There is no cure and these little bugs can stay happy hidden in my body for a while and without rhyme or reason, they can decide to rear their ugly little heads and make me pretty sick again.
But they might not and I am hopeful they don’t. In October 2016, the Infectious Disease Doctor told me he was “fairly certain” I was now considered “Late Stage”; that the bacteria had crossed the blood brain barrier and was starting to reach my brain. He offered to send me to a specialized Neurologist who understood Late Stage Neurological Lyme to find out for sure, but I never went. What will knowing it’s in my brain do for me? Nothing. I cannot live in fear. I have worked so hard to rebuild my life, to pick myself up off the ground and find the me I lost so long ago. I still have dizzy spells and migraines, sure. I clearly still have issues with my weight. I still have joint and muscle pain. But I am also the strongest I have ever been in my life.
My fight against Lyme isn’t over. But right now it’s manageable. Right now I feel pretty good. I love my job, adore my friends, saved up enough money to provide a small-but-ours place to live for Landon and I, I’m working hard in school and I’m appreciating MYSELF, perhaps for the first time ever. So life is good and every day is a blessing. And I know that even if the tough times come, I am capable of getting through them.
I have been at the lowest of low – mentally, emotionally, physically. And I have fought really hard to get better. I have pushed myself in ways I never knew I could. I understand that life isn’t always pretty and I have learned that the only thing I can control about that is my attitude. I know that God has put me through times of trouble to help me learn and grow.
I have learned to accept and love myself no matter what. To be proud of myself. It is because of my struggles that I know my strength. I found me again. And even though I may be wrapped in a different package, the girl that was lost in the darkness, isn’t stuck there anymore. I’m a better version of who I once was because I have FOUGHT to become who I am now.
Yes, I may have Chronic Lyme Disease. Yes, maybe it’s even “Late Stage”. But there is still nothing in this world I cannot do.
Except reach the top shelf. I can’t do that.