I have Lyme. I’d like to not have it anymore. I also just want cake.
So, it’s Thursday. The last day in Cycle 1 of my new oral antibiotic treatment program. Having “graduated” from my 11-month stint in the IV antibiotic program, I was anxious and hesitant to move forward with this. It meant a lot of new antibiotics as there weren’t oral equivalents to many of the IV drugs I have been taking. New drugs make me nervous.
When this all first started (and by “this” I mean getting sick) I couldn’t even pop some vitamin C without experiencing sudden tachycardia and what I have coined “blacky-outie” feelings within 10 minutes of ingestion. I was THAT sensitive to basically anything. When I began a very minimal or “gentle” oral anti-microbial treatment program under the supervision of my first Lyme doctor all hell broke loose and to be quite honest, I still feel like I have been trying to regain my “pre-treatment” self in some ways ever since. I was absolutely terrified to begin the much more aggressive IV treatment program under my second (and current) Lyme doc, naturally. Well, I survived it. Hell broke loose much more slowly and more controlled with my current doctor. If there was a hell that had to break loose in order to heal from this infection, I’m so glad it was managed by him. And, to interject a little sappy emotion in this, there are only a select few beings in my existence that have profoundly affected my life so greatly and so positively that I can not talk about them without growing teary-eyed or emotional… and Dr. J. is one of them. I struggle to find the exact words to describe my overall experience going through those 11 months of his aggressive IV therapy for my Lyme disease… I mean, I can try…
Hardest 11 months of my entire life?
Most life-changing 11 months of my entire life?
Most painful 11 months of my entire life?
Most fear-confronting I’ve ever done in my entire life?
More physical discomfort smushed in to 11 months than all of the discomforts of my life prior, combined?
Most soul-searching and soul-finding 11 months of my entire life?
The greatest victory upon completion that I’ve ever felt, in my entire life, to date?
It all seems still so lacking. So maybe I can only describe it by describing what place Dr. J, who pushed me and championed me and made me trust in him the whole way, holds in my life. Yet, even though I still have all the trust in the world in his program, I still get a little nervous with new medications – even though my body no longer reacts so strongly to things anymore. A few months back, Dr. J promised me that once I moved to the oral program, things would “get a lot easier for you”. My first new oral-only cycle consisted of five oral antibiotics (three of them new), two anti-protozoals, one anti-fungal, and two biofilm busting substances. I still remain on all of my benzos, anti-seizures, anti-nausea meds, etc…
Behold my pharmaceuticals:
It looks like a lot… But honestly… I was putting even more drugs in my system during the IV program. So this is “tapering down”. Hah! So, how did it go? Well… pretty good actually. Aside from the Trileptal disaster, Dr. J was right. This was much easier for me. My biggest complaint? I wanted to sleep all the time.
Tara say what?
I wanted to sleep, like, all the time.
I mean I guess last Friday, Sunday, and Monday weren’t great, but nowhere near as bad as IV. I walked a little tipsy, I got some mild headaches and some shooting pains, My hearing in my left ear went in and out a few times, The tinnitus was loud as ever (learned to drown that out months and months ago anyways), most days I didn’t have an appetite, and I seemed to have a little half-hour herxing peak around early evening that had me feeling anxious and shakey with a pounding heart, but that’s it. I really just wanted to sleep mostly. And I did. And it was great. It really was. Coming off of 20 months of needing every drug under the sun to sleep and stay asleep and not being able to nap without bizarre symptoms that basically scared me away from napping, this cycle was a dream. I enjoyed the softness of my pillows and sheets and down comforter for this first time in 20 months. My nervous system was calm enough to finally do so. I had been dreaming for this day to come. Really.
All of those other Lyme sufferers who complain that they just can’t get through the day without a nap or they feel so run down all the time… you know, those manifestations of Lyme… I’m SO SO SO happy to have it now! I love it!
I also feel that I am finally well enough to maybe even make it to a Lyme support group that meets in my area. It’s crazy. Healing from this is crazy. It feels surreal. If you’ve watched Under Our Skin (find it HERE) then you know the part at the end where Jordan, the Park Ranger and a fellow Lyme-sufferer, is explaining how it feels to be getting his life back as he sits on a rock with his kids climbing in the background. He has this huge smile on his face and it seems as if his eyes are twinkling, and all he can say is that it feels great as he looks around the landscape, almost with newborn eyes again. I get it. I get his gratitude. I get his amazement.
When I say that so far, this treatment program is the hardest thing I’ve ever done, it will mean little to you simply for lack of a shared experience. Maybe you will think “good job”, or “good for her”, and maybe you will sincerely mean it. I think that phrase is really only meaningful to its speaker. It’s really only understandable by its experiencer. So when I say that oral antibiotic cycle 1 has been a breath of fresh air, I think only I will truly understand it, in its entirety. I mean, obviously, the hubs is happy to begin having his bank account back. And together we are happy to have more of me back. But as far as my personal journey, each moment experienced that has made up each minute, hour, and day, it’s been a very personal and individual experience. Which makes for a very personal and individually understood statement.
Hardest thing I’ve ever done. Yes.
Years ago I came across this picture on the internet and it just resonated with me. At the time I attributed it to life in general. Now, I see it as some sort of “tip of the iceberg” picture. And, I see it as “my” picture. At the beginning of my treatment I was told I was at the bottom of a mountain and that my doctor was going to help me climb it as we would ramp up the intensity of my antibiotics. I would eventually reach the top (peak intensity) and then begin climbing down the other side, but this time with “the sun in view”. In this illustration below, we don’t see the height of the mountain she just climbed or what she went through to climb it. We don’t understand the weight of what is coming her way. But we do sense her fearlessness; certainly born from strength earned on her climb. It’s not over at the top. Oh no, my healing is far from over yet. Lyme has a lot more curve-balls to throw at me I’m sure.
But now… now I have the strength to bat.