I have Lyme. I’d like to not have it anymore. I also just want cake.
So, the gist of it is. I’ve been doing really well. In fact, these last few months were my best yet. I haven’t been blogging at all. I preferred to be doing other things, to be honest. Things like:
See Exhibit A: Tara Living Life.
Sometime in May my doctor removed Daraprim/Pyrimethamine from my protocol, which I had been on along with my antibiotics since last fall. I saw consistent improvement with it after each and every cycle. And this is where things get confusing. Maybe some of you guys can make sense of it. Because it’s just odd to me.
So with the removal of Daraprim, about 6 weeks later, some minor brain fog and air hunger began returning. That’s it. Life went on.
June comes and I decide I’m going to start laying in the morning sun every day for 20 minutes. Vitamin D supplements give me horrible milia on my face (anyone else?! Please! This has been a life long mystery association for me that no one has been able to answer for me *cry*), so I thought I’d give the ole’ natural way a try instead. My vitamin D levels are totally normal, but being an over-achiever perhaps I wanted more. Annnyways, so the first week of sun-bathing was uneventful other than I was starting to get a tan for the first time in years. The second week though, I started noticing weird things. About an hour or two after 20 minutes in the sun I’d get hit with a wave of massive fatigue. Like, get thee to bed right now fatigue. I’d sleep for a bit and then be fine.
But then around evening time, I started flaring with some old symptoms. The longer I maintained my vitamin D ritual the stronger these fatigue-then-flare episodes became. My heart began to beat funny again, more forcefully. My face would flush, I’d feel malaise, tipsy, or drunk. I’d feel super wired like I really needed more Ativan, and I’d get very twitchy and experience some mild myoclonic jerks. Then it would pass and I’d go to bed like normal. Also, my sweat started smelling like ammonia again no matter how often I showered (gross I know, deal with it). For almost all of June I thought this was because the cessation of Daraprim had allowed some protozoal infection (which I have been convinced this entire time is my biggest issue) to gain a bit of strength again over me. However, at the end of June I stopped my sun ritual to fly to DC for several days for a visit at Dr. J’s clinic and a vacation. Once the sun-bathing stopped, the symptoms stopped. In fact, they didn’t only stop, but I felt better on that vacation than ever before. HUH?
CAN ANYBODY EXPLAIN THIS BECAUSE PUBMED HAS NOTHING TO TELL ME.
I’m shouting I’m sorry I’m shouting.
Regardless, since my visit at the J clinic was the very first thing I did once I got to DC, not enough time elapsed for me to experience the effects of stopping the whole sun exposure thing so I told them all these things were happening and I was connecting it to the Daraprim removal. And maybe some of it was, I don’t know. Can one ever, with this disease? The PA I saw at the clinic determined to bring all the babesia artillery back into my life and sent me home with a protocol that looked like something I would have been on a year and a half ago.
…And it killed me.
(actual footage from that week at my home)
After three days in to that protocol, I had to stop one of the babesia meds in order to prevent uncontrollable vomiting. After five days, I was too sick to leave the house, too weak to stand up straight, too nauseous to eat food, too neurologically fragile to be trusted to drive, and feeling so defeated I was despondent. I missed a week and a half of classes (except this soldier of a girl drug herself into one class in the midst of this chaos and took a two-hour test and got an A. I deserve to brag about it).
A few things (this post is so fragmented just bear with me):
So initially, during Babesia kill week, I called the clinic and was like, “Yo, guys, what is going on please end this madness”. And they were all “We’ve been over this Tara, it’s a herx, keep going thanks and have a nice day”. A week later I wrote the clinic a big long email explaining that I had been improving just fine on Daraprim alone, why did we need to bring back the entire calvary (I was actually really angry and combative and I blame the ammonia poisoning). They wrote back and told me stop everything and go back to the protocol I was on since last fall, the one that I was improving on, and to make sure I see Dr. J personally next time I go back for an appointment (I’ve been seeing PA’s at the clinic this entire year).
WHAT DO I DO.
Mentally, this has been really, really, devastating for me. I mean, they specifically tell me at the beginning of treatment they can never get every last bug. I will always have these critters. My own research and understanding confirm that truth. The goal here is to just get them under control and my immune system back on top, running like it should with organization and specificity – i.e. not over-reacting to the point of symptomatic hell. I wouldn’t have been surprised by a moderate herx back on all of those medications. But the level to which I descended in just five days really took the wind out of my sails. I was really angry at the clinic. I was really angry at the Universe. I felt like for years, I have been this tiger in a cage, poked and prodded and deprived of meat. Someone had finally thrown me a bone, a meaty, delicious bone, and then took it away from me. Ups and downs, setbacks, non-linear progression… that’s the life of Lyme treatment right? I had assumed I was through the worst of it as life and my health and been awful predictable and relatively stable since last winter. And the fact that this happened with no major relapse to warrant it really frustrated me further. I don’t have to tell any of you how much one longs to get their life back. It was utterly devastating for me to have been experiencing life again, only to have it ripped out from under me. I cried for several days straight.
I’m two weeks post that babesia kill week today. I was back in school this past week and able to perform all of my normal obligations. I don’t feel as well as I did earlier this summer though. The immune system “chatter” is still going on. And I still have so many questions. What was the whole sun exposure stuff all about? What on earth was that treatment response all about?
I’m open to suggestions from all of your brains.
P.S. I am going to go and get ahead of the predictable comments by interjecting here and standing up for my doctor. While I do work closely with them on my treatment and protocols, at this point in my recovery we’ve had the leash lengthened quite a bit. It’s part of the process of weaning a patient off of their dependence not just from antibiotics, but also from the “security blanket feel” that the doctor provides you during your treatment. Really, it happens quite naturally. My life increases, my grip on my doctor decreases, and his grip on me decreases, and it’s all healthy and progressive. So a lot of things I’ve just been doing on my own (with their blessing) that previously they did not want me doing when the implications of such were dangerous. Things like adding herbs to my supplements, weaning myself off or decreasing dosages of stabilizing meds, experimenting with detox methods and their resulting flares, etc. Some of you may feel it’s not right that I have so many unanswered questions right now. And perhaps to an extent it’s not. But I’m on the other side of the continent from my doctor, and I just flew out there. I can’t exactly do it again anytime soon. And since I recovered mostly from that treatment cycle, it’s not a super pressing matter that would warrant an impromptu phone appointment. I’m not in any current danger here. The PA I spoke with also had no idea what the sun stuff was all about. This is basically a really long way of me saying I don’t want to hear about how I need to just call my doctor. We’re in touch. We’re seeing how things pan out.
P.P.S. I’ve also been debating how to even mention this totally unrelated thing. But hopefully it comes across the way I intend it to. I did not want to devote an entire post to it and make it a huge deal. Hopefully placing it under a “P.P.S.” will work. I originally started this blog as a place for me to journal my experiences for my own benefit, as a story to give my kids someday, and as a creative outlet for me to write. I never in a million years expected anybody to find it, notice it, or care. Eventually, a few of my early posts were noticed and shared extensively on social media and readership skyrocketed. Suddenly I had to come to terms with the fact that the blog was “out there” now along with pieces of my heart. For the most part, people were extremely supportive and encouraging and I routinely had my inbox flooded with emails telling me to keep writing. I started including posts about the disease to help give people answers I wished I had been able to find online when I was first sick. I posted about whatever I wanted to post about – as is my prerogative and my only first intention. I don’t make money off this blog. This is not something I profit from. In fact, I pay for this domain.
This year however, I’ve gotten more and more negative comments and messages. People picking apart things I’ve done, decisions I’ve made, and treatment I’ve chosen. For the most part I’ve been able to let that roll off my shoulder and accepted it as part of the territory when one publicizes a portion of their life. Alarmingly, though, I’m getting more and more fairly rude demands about what I should post about and what I shouldn’t, including hurtful and unnecessary demeaning of things I chose to share. To those such people, I remind you this is my blog, this was never meant to “please the public”, and I’m not under your employ? I say that as kindly as I can. I’ve always been open to writing on a specific topic when asked of me, in fact I enjoy it. But there’s a difference when people start acting like this is a paid subscription service and they aren’t liking what they are paying for. We all value different things, no need to be insulting or hurtful when something I value is considered nonsense to someone else.
I’m not bulletproof. I’m recovering from a difficult period in my life, I’m struggling with PTSD, I’m doing my best to recover on this up and down roller coaster of a disease and sometimes that includes therapeutic writing for me. In light of these recent events, I may close the currently open door on that for a while. I’m also debating allowing my domain to elapse and revert back to a free wordpress site. If you notice an URL change in August, that will be why. I’m debating privatizing the blog. I’ve debated walking away from it, even. I’m not sure what I will do, but either way, I’m distancing myself from it for a while. At least regarding any topic that is not strictly informational. It would do well for us all to remember there is an emotional fragility that comes with this disease regardless if you are young or old, male or female. Kindness must rule.
Thanks to everyone who has supported me and given me strength through encouraging emails and comments. It’s been an unexpected source of strength for me that I never anticipated when I created the blog. Much love!