Lyme Disease Story Pt 1: How I got Lyme as a kid; fatigue and pain as a teen
Lyme Disease Story 1: How I got Lyme disease and what it was like having undiagnosed Lyme as a child and teen
PLEASE NOTE: I am indeed still recovering from Lyme and the co-infections. I have pretty bad nerve pain that makes using my computer hard for me. Because of that, I try to spend as little time writing as possible, which makes this Lyme story more of an outline than a coherent story.
Check out my video of this chapter of my Lyme story, because I can share more verbally than in writing!
Growing up in Lyme country: Northwest Wisconsin
I grew up in a Lyme endemic area in Northwest Wisconsin. Specifically Polk County, you can see it on the map along the northwest border next to Minnesota.
I heard about Lyme disease and ticks for as long as I can remember. Everyone had tick ID cards and would check for ticks often.
I lived right in town where the ticks were much less; I’d have about maybe 20 total ticks over the course of a summer at my home – and just a few of those were what we called deer ticks, the ticks that most often transmit Lyme.
When I visited relatives, however, each day I’d have about 20 wood ticks and 3 deer ticks after being out in the woods, boating, at a cabin, in a park, or in the country. I remember being stripped down and scoured for ticks.
Never do I recall being bit by the deer ticks. If someone was bit by a deer tick; it would be monitored and people would go into the doctor for antibiotics if it turned out to be a bulls-eye rash (funny because you don’t have to have a bulls-eye rash to get Lyme).
The deer ticks are tiny, and they burrow into the skin; they were hard to remove in full. Often they would have to be cut out with a tip of the nail clippers- at home or at the clinic. So I would definitely remember if that happened to me.
Serious Lyme infections around me
Dog friend dies of Lyme
When I was in 1st grade I had a dog friend that contracted Lyme and then passes away. I remember being confused and hurt about this – we used to play a game with my hands and her paws, after she got Lyme she couldn’t play our fun game anymore.
Friend wheelchair bound from Lyme
I had a friend in another town who came down with Lyme quite badly. After not seeing her for a while I was shocked to see her in a wheelchair, she had her head shaved because she must’ve had some sort of operation, and she was pretty non-verbal.
Her body and particularly her face was contracted; contorted in a tense way that often occurs with severe neuroborreliosis. I remember being so sad and taken aback by this; this girl was one of those super nice, friendly, fun, outgoing and inclusive people; the type of kid that everyone liked because they were genuinely friendly and kind. To see her like that was hard.
Ticks often were dense under old cedar trees. A couple times when I was older, I recall sitting under a big cedar tree with a friend and getting up to realize we were covered in ticks, maybe 30-40. Gross!! Again, mostly wood ticks, but occasionally deer ticks.
I got a bullseye rash
LYME?
The summer I turned 8, I had a bulls-eye rash on the back of my left calf. But I don’t recall exactly, and neither does my mom – I don’t remember the medicines I had or how long I took it. My best guess is that I had 5 days of Doxy or whatever was the convention in 1990’s rural WI.
I don’t recall getting sick or having any symptoms.
The winter after that, I had some times where I didn’t sleep well. This was odd because prior to that, I was an excellent sleeper.
In the years following that, I had some sicknesses here and there. But nothing out of the ordinary.
First Lyme Disease symptoms – Sleep problems and chronic fatigue
When I was 12 years old, I entered the reality of being chronically ill – although I wouldn’t realize it for many, many years.
This was when I started to have major sleeping problems and had a big drop of energy. It was when I became chronically fatigued.
The combination of the two led me to have very disordered sleeping…creating a vicious cycle.
Of course, hormones changes were a major contributor to feeling fatigued and not sleeping well. I also would stay up late with my friends at sleepovers, or by myself reading VC Andrews Jackie Collins novels. And yes, these can disrupt one’s sleep.
But the level to which I was fatigued and had insomnia is not within ‘normal’ range. It’s hard to quantify it…but I’d give my energy level a 3-4/10, sometimes much lower. Never more than a 5.
I just thought I was flawed and lazy
This was hard because I didn’t understand what was happening, nor was I connected to what I was feeling. Instead I believed that I sucked at sleeping, going to bed, waking up, functioning in general…and the reason I was horrible at this was because I was just not a responsible, capable person who did the right thing.
Which was ironic because I was very independent because I was from a single parent home. Since I was 7, I woke myself up, made myself breakfast, got myself off to school and came home from school.
Fatigue and Sleep issues: most common chronic Lyme disease symptom
Fatigue is a main symptom for chronic Lyme, even more more so than the well-known joint pain. Well, that was definitely my life now. In the 90’s people still thought that Lyme’s tell-tale sign was joint pain, like a single knee hurting. Nobody I knew ever thought that fatigue could be a symptom of Lyme.
Exposed to a Bartonella
At the same time that I became fatigued and had sleep problems, I highly, highly suspect I was exposed to Bartonella, a common Lyme co-infection. I brought home an adorable little kitten I found lost in the woods. An adorable and flea-infested little kitten, to be exact (and Bartonella is often transmitted by fleas and cats).
Those fleas bit the crap out of me, and I also had a lot of scratches from our playful kitten. My mom had Cat Scratch disease and received antibiotics for it, and although I did not become acutely ill from the flea bites and scratches, it is likely that Bartonella became a co-infection of mine during that time.
2nd Lyme Symptom: Foot pain at age 14
Speaking of Bartonella, when I was 14 years old, I began to have major foot pain. Bartonella commonly causes foot and leg pain: think chronic shin splits, plantar fasciitis, heel spurs, ankle problems and so on.
{PLEASE note: I am in a storytelling mode and NOT in a practitioner mode while writing this; this is about my subjective experience and I am not giving a lot of educational information about the disease processes. For example, I will save the information about why bartonella causes foot pain and what to do about it for a separate, future article. But if you want more assistance with more medical type info, please refer to a site like Dr Rawls’s}
Oh geez…this where it get’s painful. Although fatigue is no joke either!
My own Lyme tendency: Pain moves in and takes up residence 24/7 for years and years
The foot pain began when I was working on my feet. I had a job at this little store (aptly called The Little Store) and after a couple of months my feet hurt. Instead of getting better when I was off of them, my feet got worse. Years later I worked with a physical therapist and discovered my pain situation was Plantar fasciitis, heel spurs and migrating fat pads.
The pain was 7-8/10 on a 1-10 scale, 1 being least and 10 being most. The pain was constant, although it hurt more when standing, walking and waking in the morning. There was not a single moment where the pain decreases or went away…it was continual. Unrelenting.
That is a trend I’ve noticed: when something hurts, it gets worse. It ramps up and up until its constant, chronic, everyday – sometimes for years at a time.
Years later when I was 20-21, I treated my foot pain with a Chinese medicine heat therapy technique called moxabustion, or moxa for short. Moxabustion is essential lighting a tip of a moxa stick over a candle flame, until the tip becomes a glowing ember, like how a coal or incense stick is ignited. The moxa stick is waved over the painful area until it becomes warm (or hot) and red. Doing moxa to a painful area can greatly reduce pain and inflammation…it is nothing short of amazing.
The topic of moxa deserved it’s own series of blog posts, but I bring it up here because it was what finally relieved the intense foot pain I had (as well as the carpal tunnel…which I’ll talk about in a bit).
Intense dysmenorrhea – more pain
THE CRAMPS
Around this time my dysmenorrhea got waaaaaaay worse. Wowee! It was bad. I would pass out, violently shake, vomit, and not be able to move, speak or stand for a number or hours. Whatever I was doing, wherever I was, I had to stop and go home immediately.
I see the intense dysmenorrhea as separate from the Lyme and co-infections, but after learning about inflammation over the years, I have reason to believe that Lyme and the co-infections exacerbated the pain I had during menstruation.
And without a doubt, having such extreme menstrual pain created a very stressful, traumatic situation to try to live through. It completely shaped my view of who I was.
They cramps brought me to believing that my body was faulty, and that it was my fate to suffer at things that seem completely unnecessary, and that I would never ever have a normal, easy life. I would always be forced to visit into a pain-filled hell land every single month, simply for being me.
{Spoiler alert: the pain was horrific and got worse each year until I was pregnant with my son when I was 31. Luckily now I’m much better, but I still have some cramps}
Carpal Tunnel – Lyme related joint pain continues
When I was 16, my wrists started to hurt. One day at gymnastics gym, I did a handstand on the concrete for a few seconds, and my wrist felt achey. The ache got worse as the day wore on, and by bedtime I was in 7/10 pain every minuet of every day for 4 years until I did moxa when I was 20-21.
Low immunity: constant colds, flus, pneumonia
COLDS and SUCH
In high school I started to get a LOT of colds. Once I had a cold for 13 months straight! Which was pretty much a case of chronic bronchitis.
I had pneumonia. I had constant ear infections.
This became a major problem for me and continued on for years and years. It still is a problem if I don’t take care of my immunity with herbs, diet, sleep and so on.
Mold and Smoke exacerbating chronic Lyme
When all these pain conditions and lung/immunity things started, I lived in a moldy basement apartment. I also was exposed to cigarette smoke my whole life. Both of these things greatly impacted my health. Once I detoxed cigarette smoke after doing mycoplasma treatment and breaking up some biofilms 30 years later…yuck!
That mold though…it can be a major problem with exacerbating chronic diseases including Lyme and the co-infections.
Both mold and smoke created a PTSD situation for my brain and thus my whole nervous system. Being in a moldy and smokey environment was seen as unsafe (because it is) and it changed the way I was grounded in the world. They caused me to both be in hyper alert mode (which is draining) and shut down mode (also draining). More about that in another article.
My first multi-system Lyme flare: reaction, depression, acne
I know it’s kind of a controversial thing to talk about because of the pandemic, but I must bring it up because it is a part of my story. I had an adverse reaction to the hep b. v a c when I was 18, and I believe it was because of the hyper-reactivity of my immune system due to having mold and chronic Lyme and Bartonella.
On a Friday I had the shot, and that evening I was starting to get sick. Vomiting mostly, slight jaundice, and a very sick, hungover toxic feeling. By Monday morning I broke out in acne all over my cheeks. I had always had a few pimples here and there, but never full blown cystic acne like that. On the same day I became very depressed, also a new-to-me experience.
(Interestingly in Chinese medicine theory, the Liver is often related to depression as well as red hot skin eruptions.)
Mycoplasma as a Lyme co-infection
A week later I came down with the chest infection, which got worse over the course of a week, at which point I developed pneumonia. I took a Z Pack, but was worse at the end of it. I went back in and they cultured Mycoplasma…I took 1 or 2 more Z packs after that and got better very slowly.
Mycoplasma is really resistant to antibiotics! It has been a really rough co-infection for me, which I will get into in another blog entry.
To end this chapter…
After this I went to college…in the next video/blog entry I talk about my health during the first couple years of university, and my first really big Lyme flare when I was 20.
PS Check out my other Lyme related writings:
Thanks for reading. Best of luck to you on your own health journey. You got this.
Take good care,
Celia
