I’ve learned that just when you start getting cocky about things is when life decides to teach you a lesson.
I had quickly moved up to taking 2 capsules 2x a day of my antibiotics with no apparent problem (provided I drank enough water.) This is a breeze, I thought, but then one night I was watching a movie with the kids and lost track of time. I took my meds at 11:30 with just a sip or two of water and then went to bed.
Bad idea.
Not only did I throw-up the medication but I think I also left half of my guts in the bed.
Since then *every time* I take my medication, it’s a fight to keep from vomiting. I’m keeping it down about 2/3 of the time.
It’s like being pregnant all over again.
Another thing I’ve noticed is that my lower lip is constantly sore. After doing a little bit of research, I found out that my particular medication makes you susceptible to burns from the sun. You are not supposed to be outdoors from 10 – 3 and you are supposed to wear lip protector with an SPF of 15 at all times. My sore lips were actually sunburned lips.
What? Okay, time to buy more stock in Chapstick.
So between being nauseous, having my phone alarm go off every few hours (in a Pavolvian way, I’m learning to *hate* that tone), peeling lips, and not being able to eat, either because my stomach is upset or it’s “not time,” life is just a bowl of cherries over here.
But even still, I’m grateful that I’m in a position to be treated. I’m hearing from so many people that don’t have access to a Doctor or testing for Lyme disease, or who’s insurance won’t cover the meds. Sore tummy and lips aside, I’m a very lucky person.
This does, however, give me newfound respect for anyone with a chronic infection who is required to take massive amounts of medication. You don’t just swallow a pill or two (or get chemotherapy) and then merrily be on your way.
Putting toxins (and let’s face it medicines can be very toxic) in your system affects your entire body. Do me a favor and send over a flower or two and some crackers or chips to someone you know who is currently chronically ill. They’ll love you for it.
I’m doing okay on the gluten, dairy, alcohol free diet except that last week was our anniversary and what do you do on your anniversary? You go out for a meal. We went to a quaint little restaurant and while I tried to eat as little as I could of the bad ingredients, I still ended up eating dairy (dip, butter, cream cheese) gluten (bread) and alcohol (wine.) I figured it was a celebration and it wouldn’t hurt, right?
And then there was the Greek festival the next day where I had to have a Gyro and one (okay two) pieces of Baklava.
Sure enough, the next morning I noticed some of my old pains had returned (specifically in my feet) and I felt some muscle twitching that hadn’t twitched for more than a week. After not having that pain, to have it come back was strong feedback.
For me, that’s some pretty clear incentive to stay on the diet at least while I am being treated. There will be very little, if any cheating from me in the future.
And then in a move where life said, ‘you know what? We’re really going to stick it to you,” I got a yeast infection.
I knew this was a possibility, I was warned it was a possibility and I thought taking a pro-biotic midday would take care of this, but nope. So now, I’m treating that and I’ll be adding garlic capsules to my daily regimen. (BTW, quick test to see if you have too much yeast in your body, stand in front of a mirror and stick out your tongue, if the back of it is coated in white, that’s a pretty good indicator that you *may* be having an issue with yeast.)
Which brings me to the little discussion of why so much medication and why is chronic Lyme so hard to treat?
The Lyme bacteria is a corkscrew shaped very smart little guy. When you first get infected, your body sounds the alarm and sends its soldiers out to destroy it (these are the IgM antibodies.) But Lyme is no dummy and it’s figured out a way to hide from those soldiers.
As a simple way to explain it, one way it can hide is that it can pull itself into a cyst form when it feels threatened. A cyst is sort of like enclosing itself in a Pokeyball (from the show Pokemon.) Your body can try to crack that baby open but won’t have much success. The cyst remains closed until the coast is clear at which point the bacteria reappears. Pretty ingenious.
Another way that the Lyme bacteria evades detection is that it can form a biofilm on its surface This is essentially like putting on Harry Potter’s cloak of invisibility. It’s there, still doing damage, but your body can’t “see” it.
And you can’t fight what you can’t see.
Lastly, the Lyme bacteria is a corkscrew shaped bacteria (another corkscrew bacteria that we all know and love is Syphilis.) Corkscrews can burrow into tissue, even get into things like joint spaces, and places where there might not be the best blood supply. Corkscrew bacteria can also get into the brain and if that doesn’t get your attention, I’m not sure what will.
To combat this (the Lyme doc’s and I believe) that you need to wash the inside of your body in a lot of sustained, high dose antibiotics. Some docs will even “pulse” your medication, a few weeks on, stop for a week or two, and then a few weeks back on, in an effort to draw out those cysts.
As we all know (or should know) , treating Lyme is more of an art than a science with each person needing a treatment plan that is tailored to them. (For example it looks like diet is going to be playing a big role in my healing.) Just like there are varying symptoms to Lyme, it appears that there are varying ways to go about treating it.
In summary it’s been a little bumpy, two steps forward, one step back, but overall, I’m in less pain and I have more mobility than before I started my meds. One of my kids even noticed that I was driving using my left hand.
I never drive using my left hand because the vibrations from driving hurt my left shoulder too much.
And yet there I was, using it without a problem, in fact, I wasn’t even aware that I was using it.
I’m not naive enough to think that my Lyme will be “cured” anytime soon, but I do believe that I’m starting to collect enough evidence for people to at least say “hmmmmm.”
Note: Last week I may have inadvertently given you the impression that my leg rash was my primary symptom and the reason I was being tested for Lyme. That wasn’t the case, I had had a nagging 2 year case of tendonitis in my right leg that “spread” to my left leg, then my feet and knees hurt to the point where walking was difficult. My primary complaint was joint and tendonitis pain. The rash was just gravy on an already precarious condition.
But that’s not to say that a rash isn’t important. Three of my kids who have been treated for Lyme are also being treated for a co-infection called Bartonella. A hallmark of that infection is a rash that looks like stretch marks across your skin. (Being really cranky is also a delightful symptom of this one.)
Here’s a photo of my son’s back rash – he’s currently on meds for this and when people comment (usually during swim team season) he just tells them that he had duked it out with Wolverine.
Disclaimer, this is an account of my Lyme symptoms and treatment, it is not intended to be used in the treatment of anyone else’s condition. Please consult and work with your physician if you think you may have Lyme.
Let me know if you have any questions about my Lyme symptoms and/or treatment, if I don’t have the answer, I’ll find someone who does.
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Wendy Thomas writes about the lessons learned while raising children and chickens in New Hampshire. Contact her at [email protected]
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