I want to begin this post by saying that this is MY experience with Lyme…every person will have a different one, based on the severity of their symptoms and the stage of their disease.
So. Life with Lyme.
The early stages weren’t too difficult, if I’m being honest. As I was early in my pregnancy, any symptoms I had could’ve potentially just been early pregnancy symptoms, but I’ll list them just the same (since they carried into the second trimester of my first pregnancy). Apart from the rash that I had at the beginning, my only symptoms were headaches and fatigue. I couldn’t get through the day without taking at least one nap, sometimes more than that. Luckily, J was still small and taking two naps during the day, so I could get away with it. The headaches, though, were rough. They were quite painful, and neither Tylenol nor ibuprofen could help with the pain. Eventually I just stopped taking them, since they didn’t help.
I eventually started to get pretty severe joint pain in my knee, so bad that there were times I couldn’t walk on it. It would throb for days at a time, and often send shocks of pain up and down my leg. A lot of pain can be ignored and managed with medication, this could not. The pain was so severe that it was often overwhelming, making it difficult to perform daily tasks. I remember once snapping a rubber band on my wrist and pinching my arms, hoping it would give me the smallest distraction from the incredible pain in my knees, but neither worked. Throughout the course of treatment, the pain often jumped from knee to knee– very rarely did they ever hurt at the same time, thankfully. My doctor said he believed that my knees were where the Lyme bacteria likely “set up camp”, which was why I had such frequent pain there (which makes sense, as it was the back of my knee where I was first bit). I also had pain in my hips, but it was never anywhere near as bad as the pain in my knees. This was probably my worst symptom, as it was the most frequent.
Scarier than the joint pain was the crushing fatigue. I still dealt with general fatigue on a daily basis, but this was different. I would be going about my day doing whatever, and all of a sudden, my body would basically collapse on itself. I would get dizzy and completely lose the ability to hold up my body weight, so I’d immediately have to sit down to avoid falling over. I couldn’t lift my arms, I couldn’t walk, I could barely even hold up my own head. It would last anywhere from 5-30 minutes, at which point I could get up and resume whatever I was doing. It got so bad at some points that I was afraid to even hold my own children, because there would be no way that I could avoid dropping them if it happened. Fortunately that never happened! But it was a very real fear, and one that kept me from holding my kids (especially the girls, as they were newborns at one point or another during my treatment) as much as I would’ve liked. I was also scared to drive, because I never had any warning, and knew that if it happened while I was driving, I’d likely crash the car and injure myself, my children, and/or others. The fear was almost crippling at times.
The most frustrating symptom was that I eventually lost the ability to read. I don’t mean that I was literally unable to read, because I could. But I completely lost the ability to comprehend what I was reading, a trait that is unlike me. Before Lyme, I was an avid reader, and read all the time. After I got sick, I remember picking up my favorite book (East of Eden by John Steinbeck– a book I’ve read at least 20 times), and having no idea what I was reading. I turned to the first page, and just read the same line over and over– completely unable to comprehend even one line. Throughout treatment, I tried several times to pick numerous books to read, but it was the same thing. When I brought this up to my doctor he said that it was because the bacteria had crossed the blood-brain barrier and was attacking my central nervous system. That statement, to be perfectly honest, was one of the scariest things I had to deal with. Not knowing just how far it would go was a constant stress. Would I lose my ability to walk, to see? Would I be unable to remember how to get home, or what I needed to pick up from the grocery store? Would I forget who I was, or who my husband or my children were? Would I eventually lose my ability to care for myself and my children? It was a sad, scary, and lonely time.
Fortunately, there were really only a few times where it was blatantly obvious that something wasn’t right with my brain. The most vivid was when I was in the car with my kids (of course), and I suddenly couldn’t remember what side of the road I was supposed to drive on. I sat parked at the edge of our apartment complex and looked at the side road I was about to drive on, and could not for the life of me remember which lane I was supposed to be in. I had to have sat there for at a few minutes trying to remember (hoping to remember, really) before a car drove by and I could see which was my lane. However, even as I drove, it still didn’t feel right. It only happened that one time, but the feeling of knowing something wasn’t right in your own head was terrifying.
So, friends, these were the things I dealt with throughout my days with Lyme. I feel like my case was mild compared to some, and I still can’t imagine what it would’ve been like to have been affected more severely.
Oh, friends. I was blessed to have a LLMD who blended both herbal and antibiotic regimens, but let me tell you, some of the things I had to take over my treatment were things I would not wish on my worst enemy. I am pretty convinced that some of the tinctures and things I took were some of the most foul things ever concocted, and I am not sad to be done with that period in my life.
While I was pregnant with and breastfeeding the girls, I took amoxicillin twice a day. This was by far the easiest (and most pleasant) part of treatment!
As I said earlier, my LLMD blended antibiotics and herbal treatments. The herbals came in liquid or pill form depending on what it was, and let me tell you that I always prayed for the pills!
This is a picture of what all was in my final treatment regimen. So, two to three times a day (I dont remember what exactly it was at this point) I would mix 10-20 drops of each of the liquids into room temperature water and chug the world’s most nasty medicinal cocktail, and then take the accompanying pills. There were some herbs that weren’t too bad, and others that made you gag as soon as you opened the bottle. I remember drinking the herb water and then using mouthwash immediately after as a chaser of sorts, but it didn’t really help much. It was pretty frequent that I’d be gagging at the sink for a few minutes after each dose, especially because the taste tended to linger.
The picture above isn’t even half of all the herbs I’ve had in my possession at one point or another. If the bottles weren’t empty at the end of a treatment regimen (they changed every three to four months), I threw them away when they expired, and I also threw a lot away when we moved. I had enough bottles to fill probably four or five of those containers– and again, my case was mild.
Most Lyme treatments (and LLMDs) are not covered by insurance, and let me tell you, those are both EXPENSIVE. At one point, I was prescribed something that cost over 1300$. I was fortunate in that my insurance covered all of my antibiotics (I don’t know how, and I don’t want to know how), but all of the herbs, the doctor’s visits, and diagnostics were out of pocket.
The initial blood work that was sent to IGenex was 350$.
The cheapest we paid for a doctor’s visit was 100$ (which only happened once, most were twice that), with the initial appointment costing something like 300-400$.
The herbs ranged anywhere from 30-100$ a bottle, and I remember thinking how lucky I was when I was only prescribed 3-4 bottles, instead of my usual 7-8. The most expensive trip cost us almost 800$ in herbal treatments.
Friends, keep in mind that these numbers are not uncommon for a person in treatment, and again, my situation was mild. Some individuals require things like IV antibiotics, something that can cost several thousands every few weeks. Also bear in mind that when you see the doctor every couple of months…these costs add up insanely fast. It was a not-very-funny joke between Sean and I that that trip to Florida was the most expensive trip I didn’t pay for (my grandma usually covered the costs of my flights, bless her heart).
So, friends, I leave you with this: Lyme disease is not something to be taken lightly. It is difficult to live with– at its best, it’s a nuisance, at its worst, it’s debilitating. It is hard on the body, it is hard on the mind, it is hard on the spirit, and it is hard on the wallet. If you know of someone diagnosed with Lyme, ask what you can do to help on a hard day– there will always be something! Offer to do a load of laundry, to pick up groceries, to do some dishes, to bring dinner, to sit and listen– it will be so appreciated.