It was two years ago this month when I was frightfully ill and diagnosed with Lyme disease. What an ordeal. My life would never be the same. I’m remembering it because I am under the weather. Again. And terribly discouraged. It’s the Lyme. Still. It has gotten better these past two years, but it has never gone away; the doctors tell me it likely never will. They tell me I will always test positive. I have recently been told that I will likely loose my teeth due to rapid bone loss. Related? Yes.

This busy summer week in the middle of July I have had to cancel plans with friends more than once. I have neglected housework, garden, my cat, grocery shopping and self care in lieu of survival mode, meaning bed or sofa time. Feet elevated. My joints are swollen and painful and I’m running a fever. I’m clumsy, tripping over my own feet. Have a headache. But the real issue keeping me from leaving the house is the Bell’s palsy. Specifically, my right eye. The right side of my face feels like your funny bone when you hit it – painfully tingly. I was accidentally clocked in the jaw once years ago and nearly passed out. It feels like that. The irritated facial nerve causes my eye to swell and be bloodshot. I could go out with a patch or dark glasses, but the sensitivity to light is stabbing.

I’ve been taken down (but not out, at least not yet) by a tiny insect. These things are not to be toyed with. This time two years ago I was definitely dying, and fast. The 4th of July was a Sunday. I remember it well, because I woke with a big dark welt on the back of my leg. Being 70, I thought it prudent to go to the ER and make sure it wasn’t a blood clot. They did an ultrasound and determined, no, not a clot. Maybe a spider bite, or some skin irritant from the garden. They sent me home with a script for an antibiotic. I wouldn’t fill it. By Monday morning I was too sick to drive to the pharmacy. I was overtaken by the worst “flu” I’d ever had.

By Wednesday or Thursday night I was in trouble. I couldn’t keep any food or liquid down, I was disoriented. I didn’t know what day it was. I had not slept because of pain; I paced the floor instead. I called my primary care physician who insisted (over the phone) that I had Covid, despite testing negative. Apparently the home tests were not to be trusted. Wait it out I was advised. Whatever you do, don’t come here, and don’t go to the ER. Take Tylenol. Clearly I had not described this pain accurately.

Sunday morning, eight days in, I woke with half of my face paralyzed. Afraid I had suffered a stroke during the night, I got my son to take me back to the ER. He would have to help me dress, carry me to the car and set me in, and get a wheelchair at the ER door to transport me inside. I couldn’t stand let alone walk.

In that week since I first visited the same ER with the same doctors I had lost 20 pounds. My ribs were showing. I could barely speak. Sure enough, I was severely dehydrated and my potassium levels were dangerously low (who knew this was a thing?) The brilliant ER physician admitted he didn’t have a clue what was going on, and called in another doctor for an opinion. Fifteen minutes later my (NEW beloved!) doctor walked in, asked me if I’d had a skin breakout in the past week, took a look at the records of my previous visit, looked at me and said, “You’ve got Lyme.”

He told me it would take a few days for test results to confirm that, and meanwhile they were admitting me. I burst into tears. I had a chance now. He literally saved my life. Later I would learn that I was his 3rd Lyme diagnosis that week. The first two were unrelated young children, rushed into the ER by panicked parents when they woke unable to move their legs. Now, you should know, this is a tiny hospital in a village of 1,000 people, with an inpatient capacity of 6 beds. Talk about lucky.

You probably know someone with Lyme. A good friend has a daughter-in-law who has been struggling with it more than fifteen of her 30+ years. My son was bitten a few months after I was and had the distinct bullseye rash. He suffered the same symptoms, albeit somewhat less severe, and still has chronic pain and fatigue. I don’t have to convince anyone that this is a serious problem of epidemic levels here in the midwest U.S.

But it is not – I repeat, not – being properly addressed. Most doctors will tell you that 10 days on Doxycycline and you are cured! Know anyone cured? Me neither. I will tell you that the most help I received was from acupuncture treatments. An opthalmologist recommended sewing my eye shut – permanently. No thank you. I still have perfect vision in that eye. It always feels like it has a wad of cotton in it, but I CAN SEE.

Believe me when I say that I am enormously grateful that I have fared as well as I have with this. Many people contract Lyme and never know what has caused their chronic illness. It steals your quality of life silently and invisibly, and you are just as likely as not to never be taken seriously by a physician. I was diagnosed early and treated aggressively with days of IV antibiotics and antivirals. Not to mention the anti-nausea and pain meds I received that allowed me to s l o w l y recover. Had it not transpired that way, I am certain I wouldn’t be here today.

There is ground breaking treatment available in some of the most progressive clinics in the world, but it is not covered by insurance. Most of the treatment is not – if you can convince a doctor that you need treatment at all. There are hundreds of videos available by people from all walks of life. Many famous and wealthy people have documented their own battles, and told of the years and millions they spent to get well. I don’t believe I’m an alarmist – but this is alarming. Please educate yourself and your loved ones, and push for help if you are suffering. Never settle for medical gaslighting. If you have Lyme, your life is at stake.