This post is about what led me to finally suspect and pursue Lyme as a reason for my issues.
1. History of tick bites- at first I blew this off because really, who HASN'T been bitten by a tick? I never remembered the "bulls eye" rash (officially called an erythema migrans) commonly associated with Lyme, but many patients never get this rash or don't notice it if it's on the back or in the hair. I distinctly remember a bite about 4 years ago, because it left a red itchy spot on my stomach for about a month. I don't remember the tick, how I got it out, how big it was, etc. The other major bite I know of was when I was a toddler. I had one on my head, and a month or more later my parents took me to the doctor for swollen lymph nodes in my neck. They asked if I'd been bitten by a tick, and when my parents said yes, the swelling was attributed to the bite. My LLNP (lyme literate nurse practitioner) who is treating me believes, and I agree, that this was the bite that initially infected me. There would be no reason for swollen lymph nodes weeks later if my immune system wasn't trying to fight something off. Of course there's no way to know for sure, especially since the tiny deer ticks in the nymph stage are what most commonly transmit Borrelia borgdorferi (the bacteria that causes Lyme) so often you don't ever see a tick or know you were bitten. Also it is now coming to be believed that Lyme can be transmitted via other biting insects like mosquitoes and spiders. It can also be transmitted in utero and has been identified in breastmilk (meaning we'll likely be testing the kids at some point, and facing treatment decisions there if things show up questionable).
2. Symptoms that don't match testing- I had so many symptoms of other diseases, like thoracic outlet syndrome, MS, lupus, arthritis, neuropathy, but the testing was all negative. That's a hallmark of Lyme. It mimics other inflammatory and autoimmune conditions. I even had surgery for alleged carpal and cubital tunnel syndromes on my right arm that, not surprisingly, didn't help at all. In fact, my surgeon told me that my symptoms were much worse than what the nerve tests showed they should be but he recommended surgery anyway. I now wonder if that arm EMG/NCV showed any abnormality at all. I sort of doubt it. My fingertips are all numb, my arms and hands go to sleep all the time and they hurt to some degree almost constantly. Writing, typing, texting, and even holding a cell phone to talk are painful, but all tests are normal. The tingling/buzzing feelings throughout my body, and most noticeably in my feet, made me immediately suspicious of MS and I was grateful to be seen by a top MS neurologist at UAMS last fall within weeks of noticing the symptoms. After a workup and MRIs, MS was ruled out. It would literally feel as if I were stepping on and off of a vibrating cell phone, very bizarre sensations. I flew to Chicago to a peripheral nerve center to see another neurologist who repeated the EMG/NCV on my arms and legs, again normal. He said if it was a neuropathy, it was small fiber because that doesn't show up on those tests. My ANA was elevated, that's antinuclear antibody, and basically means there's something wacky going on in my immune system. The positive ANA earned me a visit to a rheumatologist to rule out things like lupus, and testing for it and other autoimmune diseases was negative.
3. Online wisdom - now I know you can't believe everything, or even most, of what you read online. But as I was searching and searching, reading through forums on a myriad of diseases it seems that the people who most matched my symptoms ended up with a Lyme diagnosis. Every time I would post my list and get feedback, it would be suggested to test for Lyme.
4. A bit of divine intervention - I have some eclectic spiritual beliefs that aren't relevant here, but I've received what I believe to be a bit of otherworldly guidance on a few occasions along this journey. The first time I really knew in my gut that Lyme was probably my issue was one day a few months ago. I was in Barnes and Noble and grabbed a book called "Why Can't I get Better." At this point, I'm pursuing the neuropathy, trying to figure out what is causing it and how to stop it from progressing. All I know is it doesn't fit the typical presentation of anything the neurologists I've seen are familiar with. Symptomatically it seems most like small fiber neuropathy, but the fact that it was patchy and widespread didn't fit the usual causes. At that point I had ruled out large fiber neuropathies and was trying to figure out what could cause an atypical presentation of small fiber. I grabbed a latte and sat down with this book by Dr. Horowitz. At the time, I had no idea he was a cutting edge Lyme doctor. I just opened to a random page in the middle of the book and the first sentence my eyes landed on was "Lyme disease can cause small fiber neuropathy." Light bulb moment right there.
5. History of Herx reactions- A "herx" is a nickname for the Jarisch-Herxheimer reaction commonly associated with spirochetal infections like syphilis and Lyme. It is thought to be the result of the release of endotoxins that occurs when the bacteria are killed. It can present as a worsening of current symptoms, fever, chills, and general flu-like symptoms. My first experience with this was on our honeymoon. I ate lots of Mexican food in Cabo, drank margaritas at the swim up bar...then got a deep tissue massage. It made me SO ill. We cancelled our dinner reservations that night, as I lay in bed with what I thought was the flu. It was gone the next morning. I now realize that the massage likely moved things around and increased circulation to the infected tissues, bringing more immune cells in to kill the bacteria, resulting in die-off and endotoxin release causing me to feel sick. The second instance was this summer. I did a 10 day First Fitness Nutrition Cleanse (and this lets me know it works!). Days 1-7 I ate super clean, drank tons of water, and took the pills and drank the tea. Likely my body was working well and killing bugs like crazy with that support. Day 8 I drank 3 beers and ate junk food, and within hours I spiked a 101 F fever, couldn't stand to have my skin touched and was achy from head to toe. I had to have my mom come up and help with the kids the next day because I had "the flu" again. It lasted 24 hours. At the time I thought it was so strange to have a 1 day viral like illness in the middle of the summer. I now know it was a herx. When I drank alcohol instead of water, and ate processed food, it overloaded my body's ability to detox and those endotoxins made me sick. To be honest, I always thought "cleanses" and "detoxing" were woo-woo money making schemes, but at least for me, they actually do something and are necessary for proper functioning.
6. Western Blot - I could write an entire post on navigating the world of Lyme disease testing, but I'll keep it simple here. A western blot blood test indicated that my blood had antibodies to Borrelia burgdorferi, both IgM indicating an active or new infection and IgG indicating a chronic or old infection. The test cannot tell you "Yes, these crazy symptoms are a result of the fact that you have this bacteria in your blood. Treatment will cure you." That's why Lyme's a bitch. It's a clinical diagnosis, meaning you look at the big picture. The test plus the symptoms plus the response to treatment.
So I very strongly suspected Lyme based on the above, but a huge part of me thought that was crazy. I called a few lyme literate doctors (LLMD) and they couldn't see me for 3-5 months, so I made an appointment with this nurse practitioner in Collierville. She discovered she had Lyme at age 30, and her mom and child also have it. I love that she has both professional and personal experience with it. I don't know if I'll stick with her as my provider long term (chronic Lyme treatment can take years), but I left my appointment satisfied, which is more than I can say from any other medical appointment thus far.