This might not be a joyous occasion, but instead of lamenting the weekend I found the tick that changed it all, I will celebrate surviving thus far! I remember finding out that Lyme Disease can be devastating, and some people are still not well after years or decades of treatment, and that was devastating. I thought if I had to endure that agony for any more than 2 or 3 months, there was no point in living anymore. It was a bad time.
I'm happy to say, that even if you don't get well, there's joy to be squeezed out of what's left of your life. You mourn your old self for a little while, but, if you allow yourself to move through that grief at your own pace, you get used to your new normal. If you're able to bring up those rare pearls, that deep deep dive can be a rewarding journey.
So let's talk about my journey.
It "began" on April 23, 2016. We rented a little cabin by the lake in Pennsylvania with some friends, and spent the entire weekend traipsing through the woods, riding bikes, and finding many treasures with my then-hobby, geocaching. I wore bug spray, and, as a Pennsylvania girl, was in the habit of running my fingers across my scalp every night to check for bumps - swollen ticks. I used to find them in my head as a child, because we were always hiking or camping or enjoying nature. In the cramped little loft of the cabin, with the dim glow of a flashlight, I did the tick check. (My new self can only shake her head - it was a sad excuse for a tick-check!)
Finding nothing, I went to bed satisfied I was bug-free.
The next morning, however, as I was getting dressed, I found one of the little buggers crawling on my chest. Blech! I flushed it down the toilet. Oh, silly naive, pre-Lyme self! She had no fear. I continued to hike and geocache (because, man I hit the jackpot that weekend!), and do my superficial tick-checks and continued on with life.
Now the tricky part is that I was already having health issues. I was on the tail end of a long and agonizing journey off anti-depressants, and the withdrawal was brutal. I was used to feeling dizzy, sick, depressed, crying a lot, and taking a fist-full of Dramamine, Pepto-Bismol, ibuprofen, and what-not just to get through the day. It seemed maybe, by that spring, I was finally reaching the clearing and starting to improve. I had joined the gym in hopes of getting some endorphins flowing. I was seeing a Naturopathic Doctor (N.D.) to support my body and brain during the transition, and I had a lot of hope.
Suddenly, at the end of May, my arms gave out. They became incredibly heavy and hard to lift, and I was practically dragging myself around. This new symptom scared and angered me. What kind of poison had the FDA been shoving down my throat for 15 years that would do this to my body?! Did they even acknowledge the long-term effects of their drugs?! I'd been on withdrawal support websites and forums, and this was not something I expected. As usual, I started a frantic search for how to rescue my body from whatever damage the SNRI's had done.* How to make it stop.
My N.D. seemed a little puzzled that her best stuff was no longer working. We'd been on a good upward slope, and I'd seen decent improvement, until the Spring when everything just collapsed. At first, she told me I was taking longer than most to recover, because I'd been on pills for so long, that it was just a bigger adjustment. But as the months wore on, there was a suspicion of bigger problems. I continued my Googling for answers.
I had so many symptoms that matched perfectly. I remembered the tick I found in April. I'd also found one next to my bed after our Memorial Day picnic, and again on my pillow (ugh!) a few days later. Never attached, but... perhaps little harbingers of doom? I ran the idea by my N.D. She didn't think so, but, since I told her we had a local Lyme specialist, she said it couldn't hurt to look into it.
And so I got lucky. Lucky to have discovered Lyme so "quickly", lucky to know the local doctor, lucky to not have to see a dozen specialists before getting an iGenex test. Still, it was 5 months by the time I got the test kit, received it back, and was able to get an open appointment. Being new to the Lyme World, I was confused by my results - iGenex said it was positive (3 positive bands and 2 indeterminate) but the CDC criteria said negative. Again, I was very lucky to have a Lyme-literate physician willing to give me antibiotics in light of these results.
I felt better on amoxicillin. It was working. A definite sign of Lyme. But after a few months, my progress stopped, and new symptoms popped up. A long story and a year later, I got positive results for Bartonella and Babesia, two co-infections spread by the same tick. We'd suspected them and treated them mildly, but after a year, they were still in my blood. Aggressive little devils, they are.
So where are we now?
As year 2 comes to an end, I have seen much improvement over the initial symptoms. Instead of bad months or weeks, I have bad days, or even bad hours. I don't so often lose my train of thought, don't call things by their improper names (for example, I am NOT drinking out of a stapler right now), I haven't forgotten my name since 2016, and I rarely take naps (though I do rest a bit). My personality has returned (lucky you!), my eyesight is not so blurry and unfocused, and only occasionally do I get so dizzy that I can't drive. The pain is mostly in check, and the worst flare-ups happen when treating aggressively (Jarisch-Herxheimer reactions).
What has gotten worse is my anxiety and panic (Babesia herx), and my growing sensitivity to foods, possibly caused by leaky gut, leaky brain, or mast-cell activation syndrome (MCAS). I can eat almost nothing that I haven't cooked myself, and my menu is very limited, especially by eliminating corn-derived products (the consumption of which requires the services of an exorcist) and high-histamine foods (anything not butchered or picked this morning). Meanwhile, water passes through me without getting absorbed, my skin and eyes are dried up (scratched my cornea last year), my adrenals are crashing, my thyroid is barely hanging on, my gums continue to recede, and I'm always battling insomnia. Heart palpitations pound in my ears at night, and often result in panic. I've had two major panic attacks - the first one, I called 911 and had them run tests while talking me down. The second time I knew what it was, so we avoided the ambulance (but I put on clean underwear just in case). I had tinnitus for a week that kept me awake, but thankfully that retreated into a tolerable white noise for now. I have a lot of brain fog and a really hard time focusing - I tend to stare off into space because my eyes just won't focus, and I have about an hour attention span, then I'm just done. Things go numb, I fall asleep in church. I can't gather my thoughts, I have almost no motivation most days and tend to fall into a depressive slump.
What do we have to fix? 1. Babesia 2. Bartonella 3. Lyme
4. Mast cells, and hopefully food sensitivity
5. Destroyed gut from the antibiotics, and hopefully food sensitivity
6. Adrenals - nothing major, thankfully
7. Thyroid - negative for Hashimoto's, thankfully
8. Sjögren’s-like symptoms 9. God-forbid we discover mold, methylation, or metal issues.
My biggest hurdle right now is that continuing treatment - heavy antibiotics, or even herbal antimicrobials - cause me to herx hard. Severe depression, anxiety, crying, and stomachaches. So I'm stuck. I've recently begun acupuncture treatments to help with the symptoms so that I can continue treatment. I'm currently swallowing 40 pills a day trying to support my brain, gut, thyroid, adrenals, hormones, mast cells, and lower inflammation, but I'm losing my grip and can't swallow any more. I need alternative therapies to get me off the pills (or stop adding them).
Why am I so happy?
I'm not. I break down behind the scenes, and worry and fret, and mourn my life, and fight with my husband, and secretly hate you. But toxic thoughts create a toxic brain, and I need all the help I can get to stay positive, look at every bright side, and squeeze every drop of Lime-aid from this sour fruit. I'm also exhausted from trying to explain all this, so when you say, "How are you doing?" I'm going to lie and say, "okay." Actually, if you're seeing my face, I am doing much better than I was two years ago, hiding in my pillow.
So I smile on.
*I want to point out that withdrawal from any pharmaceutical or addictive substance can cause on-going multiple systemic issues. In my case, Lyme complicated the matter, but the pharmaceuticals are by no means exonerated - they alone can do serious damage.