I have Lyme. I’d like to not have it anymore. I also just want cake.
So… I’ve been getting some messages through this blog recently. Some of you have wondered where I’ve gone. I get it… I have neglected this thing for a while. And by a while I mean long enough for a missing person’s case to be assumed deceased. A few weeks ago I got a message from someone through my Contact Me tab that simply said “Are you OK?” without any further context. Not even a name. Am I to assume this person is referring to my absence? No need to send out search and rescue. But really though… AM I ok? I don’t know. I never know how to answer that question. Too many variables. I’m sorry person I wish I could answer. In any case, I figured it was time for an update. And an explanation. This isn’t going to be eloquent…
I’ve purposely withheld any information about how I’ve been doing since, well, last summer, because I was waiting for a resolution. I’m one of those people that wants to be able to write a post saying “Hey! This thing happened, this is what I did about it, and this is how it was resolved!” And so when weird stuff started happening to me last summer I was waiting for a resolution. I didn’t want to be like “Guyzzz you’ll never believe this listen to my crazy medical issues…” and then certainly some of you would inevitably relate and hope I figured it out for your own sakes, but nope… instead I just left you totally hanging. I mean, how rude. So, I waited. Summer turned to fall. The confounding nature of my circumstances only escalated. Fall turned to winter. And so on. Thus I disappeared. In hindsight that was a dumb way of thinking. You can count on me to have these sorts of dumb perspectives. My other excuse is that I was far too consumed by these things. And frankly, the longer I waited the more complicated it was going to be to somehow distill the absolute whack nine months I’ve just lived into an adequate rehash so the longer it went the more I procrastinated. And really all of these are just excuses for the real reason… which is I was unable to emotionally deal with “Lyme things” for a while, and that included acknowledging I have a blog. Sorrrrrrrry.
SO. Last summer a dramatic shift in my health developed. It’s overwhelming for me to get too much into it, but you know how your illness (If you’ve been treating for at least a year or two) develops patterns that you become familiar with, generally? Well, my patterns (that were fairly predictable) went out the window. I developed agoraphobia almost overnight. I would start to have a panic attack if I left the house for anything by myself. I’m talking can’t breath, the world starts spinning, I feel like I’m going to pass out need to pull over this second kind. The real kind. I had zero conscious anxieties about venturing out into the world, these things just happened to me independent of actual fear. My hair started falling out again. I started getting nauseous a lot. I was developing metabolic and blood sugar issues. I started having odd episodes of altered states of consciousness that would strike out of nowhere. One second I am my typical self, the next I am unable to think, am confused and half asleep with half my face drooping and a heavy concrete type feeling in my frontal lobe. The best way to describe it is I felt I was being roofied. Without knowing for sure because I have never been roofied. But we all grasp for words when describing these things don’t we? A few hours later it would resolve and I would feel the control over my body and awareness given back to me. It it felt very awful. I also developed sensitivities again to everything. It started with the support medications I take (seizure med and benzos), moved to other medications and supplements, then foods, then smells, then everything. The entire world was full of landmines that I constantly had to be aware of and avoid. This is the short list, so much more was involved, all of it weird, and all of it outside of my usual Lyme patterns.
As you can imagine this was very devastating for me. After over two months of this I was put back on the full arsenal of Babesia + Bartonella protocols under the mindset that this was a potential relapse.
So. Disheartening. There’s nothing more I can really say about that. I’ve written about the devastation of relapses before. The sadness and discouragement was my constant companion for a long while.
Around this time I also started to investigate other potential causes. Because guys, not everything is Lyme. Be smart about this. K? I had high-def MRIs repeated on my brain and 72 hr EEGs completed. Both of which came back normal but the EEG gave me a huge clue. It reiterated to me how badly my brain was starting to react to my seizure med and benzos. Every “event” I flagged to the techs during the EEG was within 15 minutes of taking these medications. Because of this I formulated a plan (with my doctor’s consent) to begin tapering one by one these medications. I can’t stress enough… Not. Everything. Is. Lyme. A part of me suspects that my medications are to blame and not relapse at all. But I guess we will never know, really. BECAUSE LYMIES DON’T GET THE COMFORTS OF ANSWERS.
By October I was noticing improvement in the symptoms that surfaced over the summer. Did I still even have Lyme? I’d be lying if I say I’m not skeptical many days. I exhibited very, VERY minor herxheimer reactions despite being on 4 high dose Babesia medications along with 4 antibiotics and 2 anti-parasitic medications. This was also unusual for me. During previous relapses a protocol like this would have flattened me and rendered me bed bound. I will say I feel like I did notice some improvement from going back on Cipro, but once again, I will never know for sure. There have been way too many moving parts in my health story during this time.
Nov-present day has been… something else. It has been a complete roller coaster that I couldn’t sum up in words if I tried. I try to save hyperbole for when it is actually warranted so that it carries the weight I intend it to, but I read this sentence and it doesn’t do the last three months justice still. Which is crappy. Wah. But cross my heart and hope to die it has been some of the most emotionally trying few months of my entire Lyme process. And the vast majority of it happened behind closed doors. I didn’t post about it. Few people knew what was going on. Even then nobody knew my inner turmoil. The questions nobody could answer for me and the angst over the hurdles that suddenly lay before me have been paralyzing. I’m purposely glossing over the emotional struggles of the past nine months because I genuinely don’t even know how to arrange them on a page yet in a meaningful way that would benefit anyone, or even just me. Because of this, my apologies for this reading like a travel log. I’m already quite bored of it. For anyone who makes it to the end I’m impressed.
So the last three months… first of all, nobody really teaches you how to reduce benzos while managing Lyme disease and that still proves to be a learning process for me. The symptoms of benzo withdrawal can mimic Lyme so identically that it thrusts you into a high stakes game of “‘is this Lyme or is this withdrawal” where you have everything to lose if you’re wrong. After you’ve poured your heart and soul and bank account and entire life into following an extremely hard protocol for almost four years the last thing you can fathom is a serious relapse and having all of that suffering and effort go to waste. I couldn’t get out of my own head once I started tapering to save my life.
I started tapering way too fast initially, because ignorance, and when I wasn’t busy hallucinating arms coming out of the walls reaching for me at 3 am in the morning, I was curled up in the corner wide-eyed and clammy constantly debating if I should pick up the phone and dial a nine… and then a one…. and then like, another one. I should totally write a post on benzodiazepines and Lyme as they are so commonly paired together it deserves it. My short preview of that post, were I to give one, would read something like “Lyme disease: practice for Benzodiazapine withdrawal”. Your nosey little selves will have to wait until the next post to hear the rest of my experiences. I am still in the process of tapering currently, with many ups, downs, swings, and the constant over-evaluating-of-symptoms syndrome.
That brings us to present day.
So, I titled this post “Going Rogue” because, well, I’ve literally gone rogue. By the end of December I had re-stabilized from my initial benzo taper efforts. I finished my fourth Lyme treatment round of the full cavalry prescribed back in August. Oh yes, your girl never missed a beat with Lyme treatment simultaneous with the worst of her benzo withdrawals… because if I’m doing something I do it. Now something I haven’t really mentioned before is that throughout the process of 4 years of Lyme treatment my immune functioning has taken a hit. My immunoglobulins have steadily decreased since onset. I mount poor responses to viruses. In fact the last time I got sick a few months ago my brother was able to test my rhinovirus load (perks of having a brother who works in a lab), and it was off the charts. I felt concerned and angry and frustrated, then I took a picture of my rhinovirused self with kleenex up my nose and turned my face into a rhinoceros and sent it to a friend because I felt helpless and this is how I cope. Early January I developed an infection under my thumbnail from gently cleaning under my nails that worsened rapidly and required antibiotics. A few days after that I got a minor scrape on my cheek and by evening, that too, got infected. My body was not fighting anything. Like, a-n-y-t-h-i-n-g. It was at this point, as I’m laying in bed with a throbbing cheek that I emphatically said, to myself, but also absolutely with a portion of uncertainty, that I was done. I was just done with this Lyme treatment. It was time to stop. It wasn’t a protest, frustration, or stubbornness. I just felt it was time. The antibiotics had fulfilled their purposes. And with that. I just… stopped.
Going off antibiotics is a very personal decision. I don’t recommend going against your doctor’s advice, although mine informed me I am risking relapse and this is not their wishes. Um, “I don’t like your tone”, right? Anyways, so do as I say not as I do. In my case, I feel I’ve made this decision carefully. I want to make it clear I do not regret antibiotic therapy. It saved my life. If I had to go back and do it all over I would make the same choice. But obviously, it is not sustainable therapy forever and at some point you have to determine if there is a continuing need for them in recovery. I no longer believe in “treat until symptom free” for everyone. Symptoms can continue long past actual infection. I had been contemplating stopping antibiotics for at least half a year. I’ve been looking for clues and signs that it was warranted. I agonized over this. I still do because after four years, I know that antibiotics work for me. They make me feel better. I’ve never gone off them since starting. They’ve become a way of life. A safety net. A comfort blanket. But I knew the following facts:
I wish I could tell you if the transition has been smooth so far, but it hasn’t. But not because of anything related to going off antibiotics (most likely). Since it was determined at the beginning of time there would be no rest for Tara, there was a mix up between my pharmacy and doctor about my seizure medication and for an entire week in January I was given double my normal dose and very literally overdosed. But because life as a Lymie is in such a constant state of upheaval, you don’t find drastic symptoms necessarily dangerous. You don’t bat an eye at being bed bound because you can’t walk let alone lift an arm because your brain can’t innervate a single muscle. This doesn’t have you running to the ER like any normal person who could walk and talk 24 hours ago would, so we didn’t figure it out for a week. I mean, the fact that I was so drugged up I was slurring for a week probably didn’t help me compute basic math when looking at my pill bottles. … . .. .
When I did figure it out, I dropped my dose back to normal immediately but a week’s worth of damage and acclimation had been done and so it sent me into immediate withdrawals from the seizure med on top of existing withdrawals from my benzos. I am still recovering from the effects of that shock to my system. SO, because of that, forgive me if I don’t quite know which of my current symptoms are attributed to seizure med mixup, benzo withdrawal taper effects, or anything rebounding off antibiotics. I anticipate being able to provide a “life off antibiotics” update once these extraneous things calm down. Unless more extraneous things pop up. Which they probably will. Because that’s what the universe does to me and I expect it now.
With all that being said, I have hope. I know health is in my future and feeling it was time to terminate antibiotic therapy for Lyme has helped me feel even more that a difficult chapter has finally closed and a new one can begin. One of healing. I expect this chapter to be just as difficult (ugh these drug tapers are gonna take me forever ya’ll), but it will have a different feel to it. The only part of me that wants to include an asterisk to this post letting everyone know if I relapse I no qualms about potentially needing to go back on antibiotics would only be uttered by the part that is still nervous and fearful. I expect her to shut up soon enough. Or to relapse. Har har.
Lastly, many of you will probably wonder what I am going to do off antibiotics. Am I moving to herbs? Holistic treatment? What? For now, no. I’m on wait and see mode. I genuinely need a break not just from antibiotics, but from the whole concept of being in a “treatment state” entirely. The only thing I’m doing differently is diet. Six weeks ago I went plant based on an experimental basis and have only been eating things that came from the ground. I am also juicing specific things that I know kick my liver in the pants. For the first time ever I can feel foods healing me. I can write a post about the changes I’ve noticed if wanted, but I refuse to be that person who can’t take a social cue and shut up about being vegan. So. The polite thing to do is give it by request only. I guess.
But yeah, ya girl gone rogue. Don’t tell my doc. I mean… he will find out in May when I see him next. But… He should hear it from me… Y’know?