Of all the things Lyme has stolen from me, my ability to write as I used to and as I know I once was able is among those things I've lost that hurt the most, even if it's temporarily. If it were up to me, and my body and brain would cooperate, I wouldn't just be keeping up with this blog nearly every day, but I'd also spend most of my time writing any of the several books I have inside, waiting to be put to paper.
But alas, that's not something I can currently do, so instead, I've tried to keep up with the vlog as much as I can. Below I'm sharing parts 1 and 2 of my most recent treatment update, for those of you who may be wondering how I'm doing and what our current plans are.
Hopefully I'll be able to reconnect with my ability to pen words in ways I feel are special and unique, but for now, here are my most recent health and treatment updates.
I'm so sorry to disappoint, friends. I know blogs are intended for sharing via the written word, but please believe me when I tell you the loss of ability to write as I once could is so profoundly painful, and no one wishes I had it back more than I.
For now, here are my video updates. I hope they're able to keep you somewhat up to date until I'm able to type or share more in any format. You can always subscribe to our youtube channel to follow us on this journey, since that's the main place I'm able to share updates right now, but I'm really working on getting my brain back to a place where it can write. And not just health updates, but REALLY write.
Firstly, I apologize for saying I was going to update treatment as frequently and as detailed as my last in-depth update. The reality is I have been having a hard time with treatment, and while I currently have finished “treatment month 4,” I still have at least 5 to go.
I have an appointment with Dr J on Thursday of this week (7/12), so hopefully I’ll be able to do a more comprehensive update after that appointment. We’ll also get my next IV protocol over the phone. It’s able to be a phone appointment this time, because we’re not test dosing anything new for this treatment month. I don’t yet know exactly what I’ll be on, I’m just hoping the azithromycin has had its two treatment months to shine and that I get a break from it. Vomiting is not my friend.
Slight segue to story time:
A week ago today, Sunday, Rog had the misfortune of going out to sit on the porch in the evening, only to find within a few minutes that he had newly hatched larval ticks all over his legs. Long story short, the whole process ended up with us finding 40+ on him that night, half of which were already attached, then 6 on me (3 attached), which we suspected got on me as I was in wife-adrenaline-mode helping Rog get them all off of him.
We both got prophylactic courses of antibiotics. Rog was able to get a course of doxy (21 days with a refill, which he’ll need due to what you’ll read in italics below), and after consulting with Dr J, I was told to go on oral minocycline and ceftin (I’ll go ahead and spoil mine: surprise! I can’t keep down oral antibiotics, at least not yet! Also, minocycline bring on scary hallucinations for me, demonic-looking things, it’s really terrifying. It does make sense, though, because my neurological symptoms are very far advanced, and minocycline passes the blood-brain barrier (BBB). Anything that passes the BBB affects the brain directly, hence the neurological and neuropsychiatric symptoms flaring.
Quick relevant aside: Rog found 6 more on him two days later, which we had somehow missed, and then another on Friday of last week, after the event happened on SUNDAY.
WEAR TICK REPELLENT AT ALL TIMES OUTDOORS.
We’re waiting to hear back from the Clinic about what we are going to do as far as I’m concerned from this point until I start my new IV protocol, but other than that, there’s not a whole lot about which to update. I did get some promising information this week, but it’s a long term thing and would take a lot of coordination and cooperation and working out logistics, so I don’t want to get into specifics yet, but if you can say a prayer for specific direction in my medical decisions, I’m appreciate that very much, because this is a potentially game changing decision.
Symptomatically right now, not much is different, and honestly, some things are worse, but given the nature of herxing and where I am in my treatment protocol, that’s to be somewhat expected. I still have 24/7 “brain breaking out of skull” pressure (classic Lyme symptom), pain behind my eyes (primarily from babesia, can be others), and trigeminal neuralgia (“suicide disease”) pain. I will make one MAJOR note here that’s positive, though, before I forget to mention it:
NOTHING helped my trigeminal pain for 4 and a half years. It’s always been constant. And while it still is constantly in pain, I’m now able to open my right eye much of the time, and push through the pain, even though it’s still there, which was NOT possible before. This has happened slowly, and I owe it all to Bluebird Botanicals (NOT affiliated) and their hemp classic 6x concentrated CBD oil. It’s legal in all 50 states, which is great for those of us whose states are lagging behind where they should be on legalizing cannabis for medicinal purposes, but it took 6 months of CBD oil twice a day before I noticed it happening, but when I looked back at it, it’s very obvious THE CBD OIL HELPED WHEN INVASIVE AND PAINFUL MEDICAL PROCEDURES DID NOTHING EXCEPT MAKE THINGS WORSE.
I fully support checking into CBD oil, even if you’re in a legal state, because CBD is great on its own, but I’ve read research saying the convo of CBD and THC is the ideal combination, but I am NOT a doctor and this is NOT medical advice, all stuff I read as I pray for legalization to reach Kentucky sometime soon.
Anyway, I’m herxing pretty badly overall from antibiotics, especially this acute course I was trying to take, so cognitively, neurologically, emotionally, physically, mentally, I’m just worn (cue: Tenth Avenue North, ‘Worn’). I’ve also been having trouble with doubt–about treatment, about the future, about wondering if things will ever be better–but I know that doubt comes from Satan, so I don’t really want to give it any space here. All I’ll say is God bless my husband for putting up with my currently almost daily emotional breakdowns, full of tears.
I am eternally grateful for Rog and I can’t think of anyone else in the world I’d rather do this life thing with. But when I say God bless him, I mean it. Caregivers have a hard time, too, especially when their chronically ill loved one(s) are having hard days consistently back to back, so I’d like to share not only my gratitude for him, but also a video we recorded addressing that topic.
And here’s the YouTube video about how hard days affect caregivers, too. Rog makes some really great points and really shares his open, honest truth here, and that’s just one more reason I love him.
(Sorry, not sorry for the sappiness...that’s just me).
I hope you’re all hanging in there and making it through, or even enjoying, the summer! I know it’s a constant lawnmower and nervous system Russian roulette here, since we never know WHEN a mower is going to start (and either require loud rap music and/or crying and screaming to block it out, depending on the level of pain.).
With Lyme and co-conditions like heat intolerance, POTS, Mast Cell Activation Disorder, constant low grade fever and multiple overheating/hot flash episodes in a day, summer, which used to be my favorite season, is not currently so. However, I am happy to be alive, I am grateful for my husband, my family, and the health I DO have, and I promise once again to try to continue choosing joy, not matter the circumstances. Even if that means I have to wade through some negative feelings first, and deal with them until they’re resolved, I know the joy is there and I’ll feel it again, regardless of how down I may feel at any given moment.
Because “I’ve got the joy, joy, joy, joy down in my heart to stay!”
God bless all of you,
First things first, I want to apologize for saying I was going to do weekly updates throughout this past 6 week treatment cycle, even though we drive to DC tomorrow for an appointment with my LLMD on Tuesday.
i DO plan on doing an update about how the other 5 weeks of treatment has gone, but it won’t be in a list like the previous update.
However, for today’s entry, I want to simply share a photo and the caption I wrote for it on Instagram (you can find me @lymeislame if you want to connect on there–I’d love to connect with you!) earlier today. The caption speaks for itself, so without further ado/rambling, here’s the photo with the caption underneath:
This is one of the many faces of Lyme I don’t often share. I talk about my sound sensitivity, but I don’t always show this daily reality (this happens at some point nearly every day once it’s lawn mowing season).
I usually don’t show it because 1. Who wants to see this same picture every day? Not me. I live it, and 2. This isn’t exactly something anyone would post on their “highlight reel,” which is what society largely tells us is the purpose of social media, or at least what social media’s become: a highlight reel.
Within the chronic illness community, and to a lesser degree (so far) in society in general, I’m happy we are moving toward raw, real content. But there’s always going to be a balance.
I won’t share ONLY pictures of me in my low times, screaming like a banshee (no exaggeration) just so the vibration of my own vocal cords, and the sound of my own voice in my head would help drown out the noise for a split second. BUT, it’s also not real to only show the great moments. I’ve been able to share some pretty significant victories lately, and some God-at-work miracles, but I guess what I’m trying to say is this:
On days when I’m the girl in the picture above (which, as I said, is me at some point on almost every day, April–October), I can also simultaneously be a girl who is thankful for the victories I have had lately. BUT–I also don’t HAVE to be thankful in the exact moments I’m screaming and leaving tear stains on my pillow; I’m allowed to feel that pain as it affects me mentally, as well as the obviously unavoidable physical pain.
Years of repeated days like this take a toll on my body. They affect not only my physical ability to do, well, anything, but also my mental health–and not in a good way.
VERY IMPORTANTLY: it affects the most special-to-me person in the world, Roger, since he lives with me and has to hear it. I know it’s not easy on his end at all, either. Just because it’s a different kind of pain doesn’t mean it’s any less valid. Caregivers endure more than anyone who’s not a caregiver (or the observer, for whom care is given) would imagine, from the outside. Rog is my person and my superhero.
This is life.
This is Lyme.
Tolerated morning Clindamycin and antimalarials okay. Pretty fatigued throughout the day. Nausea mild in midday.
Ran Clindamycin, prophylactic zofran, and Azithromycin at night.
Azithromycin caused instant severe nausea which only increased as I infused. Moving made me feel like I was going to throw up. Being upright made it worse.
Went to bed curled up in a ball.
Nausea from azithromycin worse when I woke up. Zofran in morning. Couldn’t hook up feeds. Nausea would not leave. Fatigue, too. Laid down curled up all day out of necessity. Being upright made everything spin and again, gave me that vomiting feeling. Felt achy and “flu-ish” most of the day. Reminded myself herxing is a sign we’re killing the buggers.
This was a rough day, followed by a rough night.
Embarrassing as it is to say, at 1:36am I awoke to a very unpleasant surprise–soiled pajamas and sheets. Enter antibiotic-related diarrhea that’s so well known. (Sorry if that’s TMI, but this IS primarily a medical vlog, so that’s how it goes. Transparency and full disclosure in the interest of raising awareness by sharing my own story, and hopefully helping others know they’re not alone.) I had to muster my energy, which was lacking, to get the sheets off the bed, change clothes, and put the sheets, mattress pad, and pajamas in the washer so they could be washed. I then put a towel on top of a blanket I was using as a makeshift bottom sheet, just to be safe, and got back into bed curled up because the nausea was back. I awoke several times throughout the night due to soaking night sweats (as per usual these days–that babesia is fighting back, but we’re killing it!).
Rog hooked up my feeds for me before he went to work since my nausea was somewhat abated. Mom came over for my morning IVs as she does every MWF. Morning actually went fairly well, given all the surrounding factors. I was able to hook up to my feeds after Rog set everything up before leaving for work, so that was a major win given the previous day. Another win was that I got to spend some time visiting with mom after my IVs finished, and I always love when that’s the case.
Mom also called the clinic about the diarrhea, because they request us to do that if it’s sudden onset or develops while on treatment, and they suggesting adding a significant dose of l-glutamine twice a day, and monitor what happens over the next week or so.
My headache that’s always present intensifies more than usual throughout the day. When Rog gets home, my head pressure/pain and neck pain were interfering with my ability to focus on anything but pain. I take something for pain relief, and I get a little relief from the headache and neck pain.
Did IVs and antimalarials.
Mepron is giving me major problems, not just from itself, but from the fact it has to be taken with fat. My body doesn’t digest fats well (essentially not at all), and any oral intake, especially fats like coconut butter, avocado oil, etc, cause bending-in-half level if abdominal pain. I don’t think this particular part of the protocol will get easier, at least not while I’m treating actively, but that’s okay, I can stick it out.
Azithromycin caused nausea to flare again, but more notable is that when we started the Clindamycin (first IV med I ran) I had sudden onset joint pain. Even more notable is that along with nausea, by the time I finished my azithromycin, I had gotten to the point where my body had gone into its “temporary paralysis/dead weight/can’t move at all on my own” state, and I lost most of my speech, uttering sounds and hoping Rog could understand the inflection and meaning. He then had to roll my limp body across the bed and back again to get me under the covers, and made sure my head was in a safe position, before he went to bed, too. I remember falling asleep because my lack of strength hit to the point of not being able to keep my eyes open.
Awoke several times in the night. No other unpleasant surprises in the bed, so that was excellent news. Experiencing a general “just not feeling well/flu-like” feeling, along with nausea. Unable to hook up feeds this morning because of the nausea and other symptoms, but Rog got everything out and ready so I can hook up to zofran and hopefully hook up my feeds at least by noon.
I add diflucan and Flagyl today and tomorrow, twice a day. The distinctive abdominal pain diflucan causes is already setting in. My gut is not happy. I manage to drink the first of two “kefir cocktail” drinks I’m supposed to have each day.
Noon-ish: I hooked up to the IV zofran and when it’s finished, set up and hooked up to my feeds since the nausea had abated. It was a welcome break from nausea...for a couple hours. I misguidedly tried to eat something orally during this break from nausea, and about 15 minutes after that, I started hiccuping, and knew I had to get to the bathroom to avoid vomiting in the bedroom floor. I made it there with seconds to spare before everything came back up.
Ironically, I had developed a migraine beforehand, and I think it was triggered by the nausea, or vice versa, because after my body rebelled, my migraine had eased a bit, as had the nausea, but neither were completely gone.
I ran my IV saline for the day and tried to rest off the remaining migraine pain and nausea before Rog got home from work.
Rog came home and I was able to enjoy part of the evening with him, helping him fold laundry (it’s the little things, people!) and watching a few episodes of Parks and Rec. Nothing else new or noteworthy this evening/night other than waking several times in the night (more than usual), with drenching night sweats.
Woohoo! Today is the last day of week 1 if this treatment cycle! I have one more week in this cycle, then an off week, then two more weeks on. Anyway, it’s an accomplishment to make it this far even though there’s still quite a road ahead, so I’m cheering for the victory and relishing that.
This morning, Rog got everything out and ready for me before school. He set up and primed my feeds, he set up and primed my Clindamycin, and made sure the saline and heparin flushes I’d need were right beside me on our super-functional tray table (like the ones that slide over your bed in hospitals–it’s been a game changer when working with IV stuff). About half an hour after he left, I knew I needed to start my IVs and take all my morning supplements, meds, and especially my antimalarials. Mepron isn’t getting any easier to take, and having to take it with a fat for absorption is downright painful and feels impossible with the nausea, but nevertheless, I’ll persist.
I hooked up to Clindamycin, I hooked up to my feeds, and I laid on my wedge pillow fighting a migraine trying to creep in.
My sound sensitivity is way off the charts, as it gets every lawn mowing season. My nurse came to change my dressing on my central line and to draw my weekly labs around noon. Afterwards, I was able to enjoy a few minutes outside on our porch, breathing in the fresh air, with noise canceling headphones on, playing Christian rap (check out the album Multi-Verse by Erik Stephen–on iTunes, Spotify, or wherever you get your music–and enjoy! I may or may not be featured on a track ;-) ).
The fresh air was so nice to breathe, and the sunglasses and headphones helped make it possible!
After those few minutes, I made it back inside right before my body started crashing. The rest of the afternoon and early evening were spent in and out of consciousness due to extreme fatigue hitting alongside a legit super-intense migraine. Worst migraine I’ve had in a while. Behind my eyes, in my occipital region (base of skull/top of spine), in my temples, and my trigeminal pain came out to play in full force because it didn’t want to miss the party. Rock on my friends.
Rog has his band at their annual concert band spring assessment, so I had a family friend (one who’s kind of a second mom to me and has been most of my life) on call to help come take Lucy out today when needed and she was available for me to text or call if I needed anything else while Rog is gone, since he was going to be gone till ~10pm.
By the time Rog got home, I was under the covers, unable to move without feeling like vomiting, because the entire house felt like it was spinning. I don’t remember much, other than telling him I couldn’t talk, because talking made the nausea and everything else worse. I was definitely reacting to the azithromycin here, and I also had a specific headache I’ve come to associate with Clindamycin. I closed my eyes, focused on breathing, and eventually fell asleep.
This was a rough week of treatment, but it could’ve been harder than it was, so I’m thankful for that. There were some good moments amongst the herxing and side effects, so I’m not complaining. I’m gonna try to keep up with updates in a week by week format on the blog; it makes it easier for me to jot down things throughout each day and post at the end of the week, rather than trying to condense a whole month.