A tick nymph of unknown species. March, Wisconsin 2016.
I was living in my friends basement, with no insurance, breaking my ass working on the line when I got sick, really sick. Getting out of bed was difficult, doing anything was difficult really, the lethargy was like nothing else. See my first post on Lyme here.
Like plenty of Lyme cases, it took a little bit to figure out exactly what it was. Thank god I was on the lookout for it, penchant for mushrooms and all. When the rashes and facial paralysis showed up there was no question, and it was the beginning of a serious reckoning for me. I’m still paying for my carelessness, and reconciling my failure to respect the forces of nature I blew off as an invincible guy in his twenties. I thought like plenty of people, that it wouldn’t ever happen to me, and I was ignorant.
I’ve had residual effects, but they’re not what you might expect. A couple years ago I talked about how the Lyme disease ushered in a cycle of cluster headaches that I’ve suffered from since I was about 17. If you’re unfamiliar with clusters, they’re incredibly painful. Here’s a link to the Mayo Clinic site that discusses them.
Pre-lyme, I would get bouts of cluster headaches for about 1 month out of the year. During the month what’s called the “cycle” I would get regular, piercing headaches behind my eye, which usually come at about 7-8 o’clock at night, or immediately after I enter REM sleep at night, lasting for 1-3 hours. Drinking alcohol immediately brings on an attack, so drinking is a no-no during the cycle. As painful as it was, I dealt with it since it was only 1 month out of the year.
After the lyme, I developed chronic clusters, likely due to the neurological damage. Chronic means that instead of having clusters 1 month out of the year, I had them 11 months out of the year. The headaches intensified in every respect: they were more intense, painful, and would occur at their peak sometimes 3-4 times a day, or more. It was a nightmare-there’s a reason clusters were known in the past as “suicide headaches”.
Get well card, replete with mushroom pictures from my mother’s book group I used to cook dinners for.
I started to do research online, and found a blog called cluster headache warrior, who used treadmill exercise to combat the pain. When I got attacks, I started doing jumping jacks to get my heart rate up.
Surprisingly, the jumping jacks worked, but it took time to remove the pain. On average it took 800 to abort an attack. After a while I started looking into exercises that would increase my heart rate faster, and I found the burpee, a military exercise like a hybrid of a push up and a jumping jack, they worked much better than anything else I’d tried.
The anxiety of having to worry about constant attacks was still debilitating though. In the kitchen, the dinner rush peaks at about 8 o’clock, and me leaving the line is like the conductor of an orchestra leaving in the middle of a performance. The team could see me struggle, running to the dry storage room to do burpees and come back up to expedite, drenched in sweat and dazed, not the vision of a leader who’ll be talking with guests.
Luckily my girlfriend happens to be a crazily intelligent healthy living guru, with all sorts of connections in the world of functional medicine (a science based, holistic treatment methodology). After seeing me go through an attack, she made a point of doing some research of her own. The next week she put me on an supplement regimen designed by her friend, neurologist David Perlmutter. Two weeks later, the headaches I’d been suffering from for over 13 years stopped.
My daily pill regimen for the clusters.
A couple months later, the clusters are still gone, and I’m the most pain-free I’ve ever been. I’m still careful though, since you can definitely contract lyme, or other tick borne diseases more than once. Take it from me, it’s worth it to be prepared.
I can still feel it once and a while though. There’s a particular feeling I got with the lyme, the best way to describe it was like having your body by invaded. Here and there I get that same eerie feeling again, but it’s subdued.
I haven’t seen a single dog or deer tick on me since before my bout with lyme. The reason? Permethrin. My mother’s friend works for the DNR and told me to start using it, it’s what the DNR recommends their employees use in the field. See more in this brief article from the Minnesota DNR.
Permethrin is great, and you don’t have to use it every time you go out. I have a pair of clothes designated as my “hunting outfit” and about once a month to 6 weeks, depending on use I spray it down thoroughly with permethrin, which lasts for about 4-6 weeks, that’s it.
So in a nutshell my advice is: respect the woods, use permethrin regularly, and check yourself for ticks after you go out.
Could you please give us a list of the pills you take. After 18 months of excruciating pain and completely unnecessary dental procedures, I was diagnosed with atypical Trigeminal neuralgia, which is incurable and is also called a suicide condition. I’m taking 18 pills a day to keep the pain under control, most of which are over the counter, The RX drug is Nortriptyline, and I’m taking 30 mg/day now. That combined with R-Lipoic Acid have taken the pain from suicide levels to slightly irritating. Just curious if your regimen might be helpful too.
Thanks for the reminder of the risks of lyme disease and the preventative measures to take. It is quite common around here, and something I hope to avoid.
Permethrin is what I’ve been using for three years now. Like you, I have a set of treated clothing that I use when I’m going out. That includes not only pants and shirt but socks and underwear. I even treat the webbing belt for the slacks. And when I get home, it all goes into a plastic trash bag in a spare room that I seldom go into. I have also treated my car seats. The only ticks I’ve picked up since I started to use it were from times when I went out without the treated clothing.
Yep, permethrin really works.
Would also enjoy pills you take for your Lyme bout
I feel for you, I go shrooming a lot, I use Permethrin, I am aware of lymes and I have to constantly remind myself of it every year. Thanks for this reminder, hope you are doing well my friend.
Thanks Eric.
I’m glad you’re doing better, and you finally found a way to deal with the lingering effects of Lymes.
I went through a bout last summer, despite having the classic symptoms (bullet rash and all)–and keeping the tick, it took a long while to find a doctor to take me seriously. I’ve since learned that some don’t want to diagnose Lymes, because it can be expensive and time-consuming to deal with, and they are afraid of getting in bad with the insurance companies.
I could barely work or walk, with my fingers, knees and ankles, all swollen up, and my absence for blood tests (despite me using sick and vacation time for this) was used against me to lay me off 5 months later. (Because I wasn’t dependable if I would need to go to the doctor weekly, apparently. . .)
Hi Alan. I have just discovered your website and have thoroughly enjoyed reading your experiences of foraging and cooking. I forage for mushrooms in the north east of England and every August I head to the mono-cultured spruce forests where Boletus Edulis is the dominant species. The fruiting season is a short one but can be tremendously prolific. Deer ticks are a common hazard, particularly as finding the best ceps often involves crawling through dense pine undergrowth. I had become careful about ensuring that there were no obvious gaps in my clothing but I was still finding the occasional larval tick had attached itself to me after a foray into the woods. I couldn’t understand why until I examined the undersides of some small ceps using a magnifying glass. What I had assumed were specks of dirt and had been brushing off in my kitchen after changing out of my foraging clothing were, in fact, larval ticks. With hindsight it makes abundant sense that ticks will seek out ceps and cling to them, because small mammals will stop by for a nibble and become a host. So, despite my precautions, I was importing the little horrors into my home with my mushrooms. I now clean my finds outdoors, while wearing my foraging clothes and, thanks to online advice from foragers in the US, I use permethrin on my boots and trousers. Lyme disease is still fairly rare in my part of the UK but it is on the increase and, as your testimony clearly shows, it is better safe than sorry.
That’s crazy! So strange to think of little larval deer ticks on porcini.
If they do it over here you can bet they will do it in the US too. I was pretty unfazed to find the occasional tiny tick on me, assuming they would not be as dangerous as the adult, then I did some research. Turns out the Borrelia are transmitted from the infected adult to the larvae in the egg. Hence the permethrin!
I would also recommend a body search after each trip to the countryside. O’Tom tick hocks (available from vets here in UK) are great at removing even the tiny larval ticks.
I just learned that it is possible to send your favorite outdoors clothes away to get impregnated with permethrin. Search on Insect Shield, a company in Greensboro, NC. I just got socks, pants, shirts, and neck-gaitors treated for my whole family. I hope it works! We will find out at winter’s end. We like to forage and fish in habitats that are thick with ticks and chiggers . The boys also like to launch rockets and fly remote control airplanes in tick-infested fields. And, now the mosquitoes in our area carry West Nile virus. Zika will be here in the south soon too. Take care and thanks for the wonderful writing and cooking ideas.