Updated: Jul 23, 2020
Many of you following my story know it's been a long road. If you are new here I'll catch you up a bit. In 2007, my senior year of high school, I started getting GI issues that lasted for about a year. In 2009 after a few weeks in Puerto Rico, I came back to NYC and one day I got super dizzy, with a pounding headache. That headache literally did not stop for 10 years. While I had relief for most of the time, I usually just dealt with it since doctors seemed to not know why it was happening to me. I went to my primary doctor, multiple ENT, multiple neurologists, physical therapy, had multiple tests in the hospital, and no answer. They ruled it out as depression and gave me different antidepressants for a decade. When the symptoms came back they increased the dose or changed the medication. If you are familiar with those drugs you know changing them takes a while to kick in, which is not fun.
March of 2019 I woke up in the morning to go to work. My neck felt stiff as a board. I literally could not move my head side to side. This was not a, "I slept wrong stiff neck." It literally felt as if there was a metal rod from the base of my skull to my pelvis. I go to clock in at work and I'm fighting to hold back tears. I lie on the couch in our break room and my supervisor calls an ambulance. I get to the hospital and of course they run the usual blood tests. The nurse tells me my back is really stiff. Like yes, I'm aware, that's why I'm here. A while later a doctor comes into the room. I get my hopes up that this guy will give me an answer. The doctor was a black man, maybe in his 40's or 50's and I am not really used to that. I'm here thinking wow this guy will definitely give me answers because he's like me. Dique. So anyway he comes in, stands a few feet away from me and tells me, "your labs are normal, you're most likely in pain because you're depressed." I was never examined, never asked any questions, nothing. That is basically how I've been treated by every medical professional I've ever seen. So I'm prescribed some more pain killers and muscle relaxers. I have a drawer full of medications I've been prescribed over the last decade. Half of them haven't been taken since my gut has been destroyed. I stayed home for a couple weeks since my job at the time required heavy lifting. Once I went back to work, little by little, my job became more difficult, and in May I had to leave and take an office job.
July comes around and my headaches and vertigo come back full blown. I literally cannot function. I'm in between jobs so I am in between insurance coverage and just start doubling up on the medication. I have to find some relief and try and be a normal functioning human being at my wedding that was coming up in August. It must have worked because nobody noticed I was ready to end my shit. Luckily I enjoyed most of my time in Puerto Rico and my wedding, except for the fatigue that would kill me at night.
Now I'm back in the states. It's the end of August. I was on my way to meet my mom in the city after I got out of work for dinner as she was in NYC for a work conference. I'm walking and it felt as if a truck had just hit me out of nowhere. I obviously decided to just make my way straight home. Over the next day or so my fever shoots up. I am shaking, having cold sweats, no appetite, and can barely lift my head. My aunt takes me to the ER and my fever is 103. I am diagnosed with pneumonia and kept there over night on an IV and oral medication.
Over the next few weeks I am still exhausted and having trouble walking long distances and going up flights of stairs. You can imagine how terrible it is navigating NYC subways while having a hard time breathing. Currently I'm convinced I had COVID, but that's a whole other topic.
The end of September I call my primary doctor that I had seen for about 7 years and find out she no longer works for the practice I would see her at and I had to find another doctor. I am stressed but I need to get answers for these headaches. I go to a new doctor who seemed nice. My chart is digital so she can see my medical history. She is stumped as to my symptoms and suggests I see the head of medicine in the same office. In the meantime she increases my medication and I make an appointment to see the other doctor. I'm absolutely miserable at this point and even walking straight is difficult. I go to see the other doctor about a week or two later. She already knew about my issues from her colleague. I'm describing my symptoms to her and she looks at me, with her head nodding to the side, squinting her eyes. She asks me, "have you been tested for Lyme disease?" I literally said to her, "the bug thing?" I know absolutely nothing about it. She tells me she thinks that's what I have. The nurse comes in and tries to take my blood. Between the hospital visits and me feeling like crap for a month my veins are shot. She tries both arms with no luck. She finally finds a vein in my left hand and when she goes to get the next tube to fill with blood she hits a nerve in my hand and I vomit all over myself. She could not finish taking my blood so the first tube had to be discarded. I had to end up going to a lab to get my blood taken. About 7 tubes were taken.
A couple days later I get a message to my Mt Sinai portal. The doctor writes to me, "Your results are in. Your labs are normal but you did test positive for Lyme disease. That most likely explains your headaches and muscle/joint pain. I am sending in Doxycycline to your pharmacy. You have to take it for two weeks and then I will see you for a follow up."
In my head I'm like what in the fuck? I don't really know how to feel because I am not familiar with the disease. I tell a few people and literally everyone I tell is jumping for joy because they all know someone with Lyme. Their mom, aunt, sister, friend. They tell me how easy it is to treat and how happy they are for me that I got an answer. Now you can probably imagine I'm confused. How the hell can two weeks of antibiotics get rid of headaches and muscle pain I've had for YEARS when I've taken a number of medications?! Anyway I take the antibiotics as instructed and when I am almost done with the pills my vertigo is so bad I cannot walk straight on my own. I have absolutely no idea what is going on. I go back to the doctor and she doesn't know. Now she wants me to go back to a neurologist because all of a sudden I'm cured of Lyme and the symptoms have to be something else. I'm fuming at this point. It's been over 10 years I've been dealing with these headaches. I am definitely not in the mood to go in a circle of seeing a number of specialists again. I go to a neurologist on the upper east side who sees me for a few minutes and swears I am HIV positive. The disrespect with that one just had me walk out so I go to another one and he examines me for a few minutes and does some movements with my head and says he doesn't know. Nobody knows anything. EVER!
I get home, feeling defeated as hell. I was part of this Facebook support group for migraine sufferers and it pops into my head that there has to be a Lyme Disease support group, DUH!
When I tell you the amount of information that I have received in this group has literally saved my entire life. I found out how Lyme is not believed to be chronic by majority of physicians and that many believe Lyme doctors are quacks. They believe it is hard to get and easy to treat, which explains my doctors reaction to my labs. Surprising she even treated me for it because if you look at my results above I am only positive for 3 bands and the CDC only recognizes Lyme if you have 5 positive bands. Half the time when I tell a doctor I have Lyme disease they say I don't or ask if I was treated. Like sure, that two week antibiotic cycle killed years of bacteria that took over my muscles, joints, brain, and gut. Also the reaction I had to the antibiotic is known as a Herxheimer reaction or herxing, which was discovered by dermatologists Adolf Jarisch and Karl Herxheimer in their study of syphilis and other illnesses like Lyme where the bacteria is a spirochete or in spiral shape. So a herx is basically an adverse reaction to toxins that are released by bacteria killed by the antibiotics. With Lyme disease, many times the antibiotics kill the spirochetes faster than the body can eliminate them, causing the increased symptoms. My body pretty much had a buildup of toxic waste that could not escape fast enough and that's why I felt so shitty.
At this point I'm over Western Medicine. I start searching for Lyme Literate Medical Doctors after watching the Lyme Disease documentary, Under Our Skin. Now finding a LLMD feels like some illegal shit. They aren't advertised like regular medical doctors. You gotta know other Lymies who have been treated. Also LLMD's are not covered by insurance. Since Lyme is not recognized as chronic by the CDC doctors are not allowed to treat us long term or they run the risk of losing their license and being sued by insurance companies. Also infectious disease doctors follow CDC guidelines so the chance of you getting proper Lyme treatment is slim. It's insane. Millions of people around the world struggling and are not allowed to be treated.
Now it's January and I still hadn't found an LLMD. Some charge over $1000 for an initial visit and length of treatment depends on how badly your body has gotten. Eventually, I had made an appointment with one in Connecticut who seemed promising. Then a few weeks later my mom calls me and a friend of a friend tells my mom that she knows someone who treated at this holistic clinic in Atlanta- where my mom lives, and that she is doing much better. There is no cure, but remission is possible. I looked into it and called the next day to make an appointment. I ended up going and seeing them. I spent 4 hours in my visit. I did a few tests with these machines I had never seen before. There aren't many in the U.S. but are widely used in the U.K. It was able to tell me how my organ function was and what co-infections I had with Lyme. To most people Lyme disease is just one diagnosis but for us it is multiple since ticks tend to carry more than 1 bacteria. That is also the reason why treating Lyme is not as easy as many think. It's complicated and you have to try different things. It is not an overnight change and usually involves lifestyle changes. I found out I have Borrelia (Lyme bacteria), Babesia, Bartonella, Rocky Mountain Spotted Fever, Mycoplasma,Ehrlichia, high levels of Candida in my gut, Epstein-Barr or Mono, and Schistosomiasis. I also have a hormone imbalance from Lyme, with high levels of testosterone and fertility issues. The testosterone is the reason for extra belly fat that is hard to lose. It's also been about a year since my last menstrual cycle. If I would like to have babies in the future I may need to do fertility treatment.
After learning from my support group I wasn't surprised about these findings and was pretty familiar by the time I learned I had it. Currently I am only detoxing and treating holistically and with diet as my body cannot tolerate antibiotics at this point. I'm learning what these bacteria crave and trying to avoid those things. It's tough and I go through periods where I am super angry that it's taken this long to get some relief. It's a weird life to live but I'm doing it.
My interview with the "Tick Boot Camp" podcast will be released May 2, 2020. Stay tuned!