I cannot tell you how many times I have been bitten by ticks. In rural Virginia it is an inescapable fact. I have lived way back in the woods and come home from a hike with socks full of seed ticks, tiny as black sesame. City friends would visit and lose their minds over it. “You’ve been bit? By ticks?” I thought this was urban hysteria. “Things are different in the country,” I’d say. We walk barefoot, our water comes from the well and we don’t even own a front door key. I told them no one I ever met had Lyme disease or any other tick related illness. Then things started to get funky.
I was 36 years old but I felt like 136. It was like I was coming down with the flu all of the time. There was an ER visit that marks the beginning of my decline. I went in feeling I’d been poisoned and couldn’t stand or walk and I was burning up with pain and fever. The doctor said I was sick, even very sick, and maybe it was mono. There was nothing to be done but rest. As the weeks went by I was stopped in my tracks by a fatigue I had never known. By fatigue I mean that if there was a fire in the kitchen trashcan I would be hard-pressed to walk across the room and put it out. There was pain in my joints and nerves and bones and muscles that came and went, but mostly came. Then I noticed I needed a cane to get up out of bed. Not a Slick Rick cane either – an old woman cane. The most disturbing thing of all was the utter confusion and an inability to conjure words. I knew I wasn’t making this up, even if I didn’t have a title for it.
An old friend on the West Coast listened to my descriptions and told me, “You have Lyme.” I argued. I’d been tested at the doctor’s and it came back negative, as did all of the tests. I was diagnosed with fibromyalgia, among other things. The pain and fatigue were without cause and there was no known cure. “You have Lyme” she said. Obviously, I was shocked and a little frightened. I started to think about work and what I’d do. This same friend spoke calmly to me about recovery though and gave me a great explanation of disability insurance, which did help when knowing I needed the time to recover.
This, from the International Lyme and Associated Disease Society: “The fact is Lyme is a complex disease that can be highly difficult to diagnose. Reliable diagnostic tests are not yet available which leaves many-patients and physicians alike-relying on the so called “telltale signs” of Lyme disease: discovery of a tick on the skin, a bull’s eye rash, and possibly joint pain. However, ILADS research indicates that only 50%-60% of patients recall a tick bite; the rash is reported in only 35% to 60% of patients; and joint swelling typically occurs in only 20% to 30% of patients.”*
It was not easy to find a doctor who would consider treating me for Lyme, despite my myriad of symptoms. (I could go on and on about my symptoms but I won’t. I could also go on all night about the treatments I’ve tried and the million bits of advise I’ve been given.) I stopped wanting to go out, I took a break from work that I cannot afford. Every week I would think that I would surely feel better but I only felt worse. And I don’t look any different. I don’t look sick. But one day my thumbs just stopped working. Another day I had to tape my toes apart because the feeling of having them touch was unbearable. When I reread these last two sentences I know I sound crazy. Because of this, I had considered trying some pain relief, like in the form of CBD products. I’ve heard these are great for targeting a range of problems, with many investing in white label cbn gummies, so this is certainly something I could try as I’m really struggling with the immense pain I feel in my joints and body.
Lyme is a controversial subject, plagued by politics. The Center for Disease Control doesn’t even acknowledge the existence of chronic Lyme – they recommend 2 weeks of anti-biotics for a new infection. Who knows what they advise if you don’t catch that bite early on. Lyme is hard to diagnose and hard to treat, especially because treatments vary for each person.
In February of this year, two years after that first ER visit, I found a Lyme literate doctor and started treatment, feeling hopeful. The extensive testing and appointments were not covered by insurance. (For the record, I didn’t have insurance then and recently was approved for Medicaid, which will still not pay for the specialist visits.) I’m nobody special – there is no insurance that I know of that is required to pay for this. We have spent over $6000 with $3500 in fresh bills waiting here to be paid in an attempt to figure out what was going on and how to treat it.
This is all relatively new to me and I don’t profess to have all the answers. The take away? Check yourself and your lovelies for ticks. Know that Lyme Disease is on the rise. There is currently no accurate testing for Lyme. Ask for a second opinion if you need to. Don’t just take my word for it – do your own research.
Some links that I have found helpful are ILADS and UNDER OUR SKIN.
Watch the trailer for this new documentary on Lyme that may blow the roof off this disease;
Here’s my own fundraiser to cover outrageous medical bills. I sure would appreciate my like minded GirlieGirl’s help and support, in any amount.
Malaina Poore is a writer, keeper of artist’s journals and a mother. Her writing has been published in numerous anthologies, blogs and academic journals, including The Journal Of Participatory Medicine and Amoskeag. She regularly writes about mothering for Mutha Magazine. She lives in rural Virginia. www.malainajeanpoore.com