April of 2020 was a definite start of a very strange and scary adventure of sorts. It started with a weird rash that landed me at the doctor's office with a diagnosis of "chiggers". Chiggers are not known in these parts so it was a bit bizarre to hear. That followed with a very strange list of symptoms.
- Severe bloat (I looked like I was 7 months pregnant...I'm not even exaggerating)
- Indigestion...belchy
- severe gag reflex, which was sometimes exercise induced, but was triggered by anything being near my mouth, or even the thought of it being near my mouth.
- Anorexia (see above)
- Nausea with sometimes productive vomit
- intense heart palpitations that you could see through my clothing, and that I could feel throughout my entire body.
- Intense anxiety unlike what I have ever experienced before.
- Jittery, shakey, tingles in my hands
- short of breath that led me unable to walk even down to the mailbox. Sometimes I struggled to even walk to the bathroom.
- Hard to stand for long periods of time
- Extreme fatigue that even prevented me from brushing my teeth. I had to lean on the counter to prop my arm up enough to be able to brush my teeth.
- very dizzy
- noise sensitivity
- light headedness
- an extreme headache that later lessened to just a dull headache
- thirst
- extreme coldness that I sought out the bathtub several times a day to remedy
- extreme sweats mostly at night
- a "loud" brain..."brain on fire". Paranoia
- Stomach discomfort, gassy
- exercise intolerance
- all the color in my face drained away and I became grey
- thinning hair
- brain fog
This list is not comprehensive. It is easy to write, but it was very difficult to experience. Despite having all these symptoms, I did not really believe I was sick. Amy kept telling me I was sick, and I just dismissed it all as being anxiety. Finally, after noticing the lack of normal stamina I had at work, I decided I needed to visit the doctor. He was certain I had a tick borne illness, but even then, I tried to convince my doctor that "I was just anxious". He ordered some blood tests (among several other tests: heart echo, CT, MRI, etc), and lo and behold, I had Lyme disease. Tears of happiness and hope fell with the relief to have a diagnosis that was "easily" treatable with antibiotics.
What I didn't know at the time was that I was about to embark upon a foreign journey of illness for a year and a half. Just now am I starting to feel more like my before Lyme self. Before I venture into my personal experience with Lyme, let me just take a moment to share what I came to learn about the disease itself.
Lyme disease is spread by a teeny tiny deer tick. The size of the head of a needle. The bacteria from deer tick gets into the bloodstream, but because it is a spirochete, it burrows into the muscles, fibers, and cells of the body. It is a relative of Syphilis, but Lyme is 3 times smarter than Syphilis. Often Lyme is called the "great imitator" because it takes on the symptoms of basically any illness. At one point, I was being checked out for ovarian cancer, and then later for MS. Because Lyme burrows in so deep, it can lay dormant until a moment of stress happens, then BAM! it shows up again.
The craziest thing I came to learn is that Lyme disease itself is not recognized by main stream medicine. Main Stream believes that Lyme can be treated and cured with a few weeks worth of antibiotics. What main stream does not believe, is that it stays in the system to make reappearances possibly forever. Since the CDC does not recognize it, to be treated for it requires a specialist that is not covered by insurances. I found a specialist who practices about an hour from me so I drove to her to get the help I so desperately needed. Seven months of crazy high doses of antibiotics (3200 mg daily) later, and I am hopeful for health once again. At one point, I was taking over 20 pills a day! Oh, and I was drinking volcanic ash to help detox.
I am going to try my best to capture my experience with this disease. All of those physical symptoms of this disease is nothing compared to the mental torture I experienced. I had two main bouts of Lyme disease. The first one, I was more physically ill. The headache I had was unlike anything I have experienced before or since. The pain was excruciating requiring me to use two ice packs, one on the back of my head, one of the front. I literally could feel the bacteria climbing the back of my neck into my brain. My first bout last almost two months. Three weeks of antibiotics later, I thought I was done with Lyme.
But I never felt completely better. My mental health suffered greatly. My relationship was affected immensely. Stress was at at all time high, and like I said, stress brings about a lyme flare up. Just before Christmas I had my second bout of Lyme. This time, it was more mentally debilitating. Best I can describe it is "I have rabies". My brain felt like what I would imagine a rabid dog to experience. Noise was very irritating, uncomfortable, and made me edgy. The disease settled in my nervous system. Infected my entire body, including my brain. My brain! Essentially I had a nervous breakdown.
Anxiety was ever present and thoughts were uncontrollable. I became paranoid. My thoughts were so uncharacteristic of myself that I questioned if I had to be locked up somewhere. I struggled to know what was real, still not completely accepting I was as sick as I was. It felt as though I had a completely foreign being overtaking my body, and I guess I kind of did! Several times, I felt as though who I was as a person was stuck somewhere deep inside the center of my stomach, and a dark force was acting on my behalf. There were times where I was uncontrollably sobbing on the living room floor. During these times, I felt like my soul was not present. Unreachable. I was trapped inside.
I sought out the help of the lyme specialist and got on another round of high dose antibiotics. There was an internal war going on in my body. Bacteria vs antibiotics. Both wanting to win desperately. Taking antibiotics for Lyme is like detoxing. One becomes sicker before they get better because the antibiotics are pulling the bacteria out from hiding in order to attack it. Another month and half of physical illness left me disheartened and hopeless for a healthy future.
Depression set it. Unable to use my main coping skill of exercise, depression and anxiety were overtaking me. Fast. I lost any motivation I had left. Panic attacks were present. I felt disconnected from myself. Disconnected from life. Disconnected from everything. "Lets get a dog!" I thought. And we did. Only that was not the brightest decision. More stress. More heartache when we ultimately decided to remedy that decision by rehoming the pup we fell in love with (see prior post).
Fast forward to today. One and a half years after my original lyme diagnosis, seven months of antibiotic use later, one trial of an antidepressant later, I am finally coming back from the depths of darkness. Self care, proper nutrition, and stress reduction are key to continue to battle any bacteria that may still be present. I'm hopeful that my lengthy and aggressive antibiotic treatment was enough to eradicate any and all of the illness. Time will tell.
I struggled to capture just how invasive this disease was for me, but I wanted to write this post so I can throw out my lyme disease folder of notes. Here is to leaving illness behind while moving forward in wellness!
