I was bit by a tick in 2010 while in college. A week later, I felt as though I had come down with an awful flu, unable to move my body without pain. I went to Urgent Care and they removed the head of the tick from my stomach and sent me on my way with 10 days of antibiotics. After a few days and drinking lots of fluids, I felt like myself again. I was under the impression that I was "cured" and this was the last of it.
Fast forward to August 2013. I woke up one day with a headache, little did I know that it would never go away. I noticed that I was seeing "TV Static" in my vision, flashing blue and white lights, and still images appeared as though they were moving. "This was weird" was the first thought to cross my mind. I made an appointment with an Optometrist. "Your eyes are perfectly fine. In fact, you have 20/20 vision." I am in no means a doctor, nor do I claim to have any knowledge of the referenced symptoms prior to me developing them, but I was fairly certain that this was not normal. I proceeded to my Primary Care Doctor about my headache, then to a Neurologist. "By the next time I see you, your headache will be gone." It was a hopeful statement that I so wanted to believe, however I knew deep down that it was something more.
Over the course of 4 months, I saw an Optometrist, Dentist, Chiropractor, Nurse Practitioner, Physician Assistant, Primary Care Doctor, 2 Neurologists, an Infectious Disease Doctor, and the list goes on and on. I was tested for multiple things through blood tests, MRIs, etc. and all came back normal. What was wrong with me?
I was experiencing the following symptoms:
Chronic headache
Extreme fatigue
Constant ringing in ears
Visual disturbances (seeing TV static, sensitivity, flashing lights, moving objects)
Sore muscles - back, legs, arms
Upper right quadrant abdominal pain
Stiff Neck
Vertigo
Sudden onset of anxiety/Panic Attacks
Hypersensitivity (Odd sensations on the skin)
Muscle twitches - neck, face, arms, legs
Muscle tremors
Jaw and teeth pain
Right Pupillary Defect (the pupil in my right eye stopped constricting with my left eye)
Severe Vitamin D Deficiency
I am 22. I went from doctor to doctor. The diagnoses ranged from Chronic Sinusitis, to "New Daily Persistent Headache" with an Anti-Seizure medication as my experimental medicine, to Anxiety, to Allergies. Just when I thought I was at my wits end, I remembered the tick bite.
I started doing my research about Lyme Disease. I started reading people's symptoms and thought for the first time "I am not crazy, I have what these people have!" I went back to my Primary Care Doctor and asked for the Lyme test. Little did I know that this would be the start of my battle to find answers. I was tested and the results came back "Negative." I was told "The tests are notoriously unreliable however I am unable to treat you unless you test Positive." That opened up a whole new can of worms. I looked up Lyme Disease blood test (ELISA and Western Blot) and found that these are notoriously inaccurate and are highly regulated by the Center for Disease Control. I realized then that I probably had a fight on my hands.
After again, going from doctor to doctor to try and get treated for Lyme and just getting worse, I decided to take this into my own hands. It was time to see a Lyme Literate MD and see what he thought. It changed my life. He listened to every word I said and I heard the magic words, "I can put you into remission." WAIT - Remission? Can't I be cured? I had the opportunity to be "cured" of the disease in 2010, however the bacteria laid dormant in my system and the wrong antibiotics were used which is why it erupted in August when my Immune System was compromised.
I found a doctor that believed in my case, now I just had to prove through a better lab test that I had Lyme Disease. Again, I got a call "You are negative." WHAT! Now what? Where do I go from here? I started doing my research again about the co-infections of Lyme Disease. Sometimes, the co-infections such as Bartonella and Babesia show more symptoms than Lyme. I seemed to have symptoms that align with both. Great. Both were even more difficult to test for than Lyme and extremely rare to catch.
Then on December 10, my life changed. "Remember the blood smears that we did? After looking at 300 films, we do have conclusive results. We found Babesia." That magical 7-letter word was music to my ears after 4 long months with a mysterious health issue. Although terrifying, I finally got an answer. Babesia is a malaria-like protozoa that infects the red blood cells as illustrated below. I have a road of antibiotics ahead of me for both Babesia and Lyme Disease, but I have the most confidence in myself that I will regain my health. Now please direct your eyes below the blood smear for the most important part.
Why am I telling you all of this? There are many, many, many (I cannot stress this enough) MANY people that have been impacted by Lyme Disease. There are some people with stamps on their forehead that read "Fibromyalgia" or "Chronic Fatigue Syndrome." Do they have these disorders? Maybe, but we live in an area where ticks are present. It is the modern day "Great Imitator" disease. If anyone you know develops an onset of symptoms that is unlike them, please consider Lyme Disease. I won't go as far as suggesting that they have a co-infection, but if anyone you know has undiagnosed health matters and are losing hope, consider the disease. Keep in mind when you have this illness you don't look sick, which makes it hard for some people to believe the extent of your suffering. This disease needs more attention as it can be detrimental to one's health and go undiagnosed or mislabeled for years, even decades. As my Lyme Literate MD says "You can test negative and still have Lyme. In fact, a majority of my patients do. When I see a 22 year old develop all these symptoms, I am not going to treat them like they are elderly and address each problem separately. Instead, I am going to find to root cause."
Remember: Your life is a message to the world. Make sure it is inspiring.
