How has Lyme disease affected your life? What inspires you?
Roughly February of 2019, I started experiencing a range of symptoms and over time they started increasing. It started with migraines and then a series of neurological symptoms that put me in the ER. Everything was normal, told to go see a neurologist. On top of neurological symptoms (blurred vision, numbness and tingling, memory/cognitive intermittent changes, and the list goes on) I also started to experience excruciating pain intermittently. I am no stranger to medical issues or pain (I was born with spinal deformities- have had 7 surgeries for different medical conditions. Multiple surgeries were major operations and also had thyroid cancer). I figured maybe it was something exacerbated that I already had. My arms were going completely numb with shooting pains, it was horrible and greatly impacting my daily life.
Over time the symptoms would get worse, and sometimes they would get better. No rhyme or reason. I completed TONS of testing and every test came up negative. Every time I was devastated (crazy you want to hear something wrong with you right?). I started getting suggestions that this was a conversion disorder/psychiatric, maybe chronic fatigue, stress, fibromyalgia… but multiple times providers asked if I had been tested for Lyme. I did and it was “negative.”
I remember my first (known) tick bite when I was about 13. We removed it and brought it to the pediatrician and they said it was no use to test and monitor for rash. No rash. Then 2 more tick bites that I’m aware of. No rashes. Prior to these symptoms starting- no tick bite I knew of, no rash…
Two ER visits, EEG, EMG, 5 skin biopsies, 6 various neuro-Opthomologist tests, an eye exam, 4 MRIs, two CT scans, multiple x rays, and I can’t even tell you how many vials of blood. Consulted with tons of doctors. My MRI showed white matter changes- but “nothing to worry about-could be nothing- maybe just migraines.” Did what I could to manage my symptoms with physical therapy, massage therapy, acupuncture. I stopped driving for the most part. Thank god I work from home- (very grateful otherwise I would not have survived working as long as I did if I was still in the hospital).
Every time I left without answers I cried, I felt like I was going crazy. Other people I think thought I was going crazy. I was unable to care for my daughter at times which was devastating. Not being able to pick her up, or cook her a meal, or even to play with her. There were many days I was in so much pain I was bed bound and even found it difficult to care for myself most days. It pained and broke my heart when she asked me to play or pick her up and I had to tell her I couldn’t. I tried to always at least read her stories at night and do our prayers and songs. But even holding a book would hurt at times and dropped it on my face laying down with her. She would see me cry and say “it’s ok mommy don’t be sad.” I could hear her playing downstairs with my husband, and outside with the neighbors and hearing the chatter of the socialization I was missing out on. And then the burden I put on my family to help me care for my daughter and myself…
The doctors would finish their testing and all finally say “there is nothing more I can do, I’m sorry I don’t know what’s wrong.”
I started to lose hope. With the luck of having some people re-enter my life and support of family, church family and a few friends- I kept going. I worked the best I could but would have to stop early because I couldn’t sit or stand without suffering-and eventually every time I would cry and have to say I needed to stop working early. I hate letting people down, or leaving people with more work, or feeling weak, or the “cop-out” feeling. But I was weak. Every system in my body had seemed to change in some way. I knew in my heart something was wrong… and I knew I had to see every specialist I could and have them tell me they found nothing before I would stop. My body was failing me.
My neurologist said there wasn’t much more he could do. He said he would refer me to Boston for further assessment. But we agreed to see if with my back issues I could safely get a spinal tap to rule a few other things first… Turns out I could have one-it would be tricky… but after some advice I sought out additional Lyme testing to just have one more thing checked off my list. I had to stop getting my hopes up for answers because it brought me down so much with every doctor who looked into my eyes and said they didn’t know…
So… as I’m sure you gathered… yes I have Lyme disease. I also tested for three co-infections as well which makes it much worse and more difficult to treat (two types of bartonella and Chronic active Epstein-Barr virus infection). We cried… It wasn’t the answer I wanted, but at least I had validation there was a reason. There is treatment. As a nurse I heard of Lyme and said, “ ohh well you take three weeks of doxycycline and you are good.” That is far from the truth. If you catch it early there is a very good prognosis with treatment (some people can also still have chronic Lyme even with that- many in the medical community don’t recognize that as something that chronic lyme even exists though ). You can get Lyme without a rash, without even knowing you got a tick bite. Some of these infections can come from sand flies, mosquitos, fleas and even spiders…
I have learned so much and found a community of people that gets what I’m going through. I realized there are so many people with Lyme but I know that some might not know all the things they should do to treat it and recognize that it can linger and be harder to treat especially with co-infections. Some people can have Lyme disease and show no symptoms and have no issues, all it takes is a weakened immune system and boom. There are also so many ways to treat it, no two people are the same and lots of schools of thought over what is best etc. Lyme and the co-infections are tricky. They like to hide making it difficult to treat and diagnose. The tests are outdated and inaccurate… and the guidelines for treatment are misguided by those that made them using their own research as the reference for it and also having their hands in profits others would get by having these guidelines set that way. Most treatment had to be paid out of pocket costing thousands of dollars and bankrupting people.
The bacteria creates what’s called a “bio-film.” A fancy term for a shield that protects itself from being killed making it harder to treat. The disease hides in different places in the body which is why the symptoms change so rapidly.
I am lucky I found it when I did because things started to escalate quickly. Moments where I needed help walking, couldn’t feel my legs. Tremors, scary things that made me want to go to the emergency room type stuff. The scariest was basically having seizure-like activity for over two hours. I was conscious so not a true seizure. But imagine… having your muscles contract for hours… it was exhausting. Finally my husband had to physically hold me down to help them stop. My body literally was exhausted to the bone.
I have been on antibiotics since the end of January when I got my diagnosis: when you start to kill the bacteria it releases toxins which exacerbate your symptoms sometimes tenfold leaving you debilitated again. I had to change my diet drastically because Lyme likes sugar, gluten and dairy-among a laundry list of other things. I couldn’t tolerate the antibiotics and had to titrate the dose up so slowly. Eventually my body told me I couldn’t do it all. I was still working full time, trying to be a mother the best I could and care for myself. One afternoon I picked up a pen and couldn’t write anything because my arms were completely numb. I had to take myself out of work and I hated making that decision because it was so hard. I don’t want to add work to my co-workers, I don’t want to let them down, I don’t want to admit I’m too sick to do it, I don’t want to say I can’t do it, I don’t want to look weak or feel like a victim. But I had to put that aside if I wanted to ever get better. I have been focusing on myself and getting better the best I can. With this new virus out it has made it difficult to get access to the care I need which is frustrating. But I am continuing to move forward and fight this with all I have because I want my life back. I want to work to provide for my family, I want to be a better mother, wife, family member and friend again. I have been “socially distancing” for the better part of a year since I’ve been sick, so this new lifestyle everyone is forced into is one I have been forced to be in for other reasons.
The longer you go untreated, the worse it is. Please, PLEASE educate yourself. I consider myself somewhat lucky. I caught mine within probably the first two years of having it, others go 10, 15, lifetimes. They are debilitated for life… I still hold hope for some part of me back. Scratch that… I don’t know who “me” will be when I finish treatment (please god tell me it has a finish line… Will I have flare ups? Will I work? Will I be the mom I want to be? Not leave my husband with everything on his shoulders? Will I feel I have the physical and mental ability to maybe consider the idea I could have another child? Can I cook more? Can I keep painting while working full time? Please tell me there is a slice of bread and a glass of wine in my future? Ha… The world is my oyster right? Well folks… that’s a snippet of my story. Thank you for listening (or rather reading). Check yourself for ticks, advocate for yourself when it comes to your health, reach out for help… you aren’t alone.