I have Lyme. I’d like to not have it anymore. I also just want cake.
Well, we’re practically strangers now. It’s been a while, I know. I just logged in and saw I had zero posts in September. Honestly, what happened to me. But it’s 5:51 am on a Sunday morning, I can’t sleep, and it was like the little blog fairies were begging me to blog. Throwing it in my face even… my own slackerness. So for starters… I’ve hopped on some sort of well wagon and have been zooming to wellness faster than at any point in my treatment so far. But also, this latest cycle I completed last week (Cycle 20, Hey-yo!), has thrown me back into a bit of a tailspin. But more on that later. LET’S READ ALL THE THINGS I DID.
So…. I’m sleeping a lot. Like a lot a lot. And before you consider thinking that’s a bad thing, you must stop. When the wrath of Lyme hit me over two years ago, it sent me into severe sympathetic overdrive. I’m not talking about a lot of anxiety or my cortisol levels were consistently elevated or I had trouble sleeping (I did, and they were, and I did), but I mean l lived life as if I was constantly being injected with an epi-pen, for two years. The physical tortures of which will only be understood by those few (I haven’t met many) who experienced this sort of manifestation of Lyme, to this extent. I was born and raised to be a bit of a health freak, love my organic foods, my supplements, my natural means of healing my body and mind of the few various ailments that came my way, and pharmaceuticals and even vaccines were something that I just never wanted. No thanks, flu shot people at Walgreens. No thanks. But by the time Lyme had me reduced to a curled up shell of a human being, rocking on the floor with only base-level automations, the relief I experienced after being sent home from my first J clinic visit with a handful of prescriptions to calm the madness was such utter relief. Like Tom Hanks and the spirit of Wilson being rescued from the island relief. So anyways where was I going with this? …….. OH sleep. Yes. This chica, has finally begun sleeping on her own again! I’m constantly having such a party in my head about it. It hardly seems real. I still take my sleep meds at night, but I tell you what, very infrequent is the day now that I say “I’m too sick to sleep”. I am constantly tired. And for now, after living with my hand on an electric fence for two years (even with the meds), I’m relishing it. My naps are glorious. I believe the come-down from living with such high amounts of adrenaline for so long has beyond exhausted my body. Plus, Dr. J has explained (after the fact, that little stinker) that my treatment, and I’m guessing especially the first year as I did extremely aggressive and prolonged IV treatment, caused a lot of collateral damage. This on top of the damage incurred as various localized toxin exposure to tissues, the brain, and nervous system from dying bacteria had time to fester in important places before I could detox them out. Nerve and brain damage takes a long time to repair ya’ll. Dr. J tells me to SLEEP. Like, sleep for a long time. Hibernate the year out. And so, I sleep. Happily. That was a long paragraph. I’m sorry. Because I have so much more to report still.
Speaking of Dr. J., early September I made the trek to DC to check in with him all by myself. This is the second time now, so we can for sure eliminate the first time as a fluke of isolated wellness. We discussed many things, reviewed my rash pictures together on my phone (the only setting in which that would not be weird, and it was still a bit awkward), determined the Bartonella phase of my treatment protocol has been going well, I’m killing the darn things, and I’m showing tremendous improvements by doing so. I think the Bartonella has had much to do with my previous constant state of severe flight or fight, simply because it has been during the 8-9 months I’ve been on a Bartonella-focused protocol that I’ve come down enough to fall asleep on my own. My previous 3-cycle Mepron challenge (we re-introduced it just to make sure Babesia was still under control) went without any noticeable response, so yay!
However, he seemed concerned enough about other possible protozoan infections (Protomyxzoa, Toxoplasmosis, etc.) enough to put me back on Daraprim. And if you keep up on your medical news, you are probably aware of the Daraprim scandal. Luckily, I had enough left over from my stint on it last year for two more cycles, so… you know… we didn’t have to take out a second mortgage to buy them. However… if greedy little hedge fund boy doesn’t lower the price soon, I am in trouble. I reacted strongly to my first cycle back on the drug. I need this drug! And in finding you a link on Toxoplasmosis (T. Gondii), I realized that the herx reactions I experienced back on Daraprim are very similar to symptoms of an acute infection or latent infection in immune-compromised peeps: “People with weakened immune systems are likely to experience headache, confusion, poor coordination, seizures, lung problems that may resemble tuberculosis… or blurred vision caused by severe inflammation of the retina (ocular toxoplasmosis”. I had very distinct pains in my head, I couldn’t speak actual words in my sentences to save my life at times, I walked into door frames, walls, stumbled on stairs, walked drunk at times, experienced a return of jerking, tics, spasms, and other such involuntary movements that can be labeled as seizure activity, and at times, intense and relentless pain in my eyeballs. Oh, also nausea, because Tara can’t seem to be Tara on a treatment cycle without wanting to toss her cookies (I mean celery or whatever). This was slightly disappointing as I had gotten to the point where I wasn’t reacting much at all to treatment cycles, at least nothing that truly interrupted my well-being. Now we are back to clearing my schedule (of you know, laundry), for the next three cycles I am set to take Daraprim. And let’s all cross our fingers the price of Daraprim is lowered so I don’t have to forgo wellness because taking out a second mortgage for 20 pills is just asinine. Gosh this is getting long. I fully expect you to simply skim this post.
After DC, this Lyme girl surpassed all of our expectations and drove by herself 7 hours across the barren Nevada desert, marked only by sagebrush and gas stations with slot machines, to a clinic where her Lyme soul sister (as mentioned in this post) had traveled from France to undergo treatment. I got to meet my Sonya! I was able to pull it together during my own treatment cycle and go help her with her last two weeks of treatment there before she left to go back home. We trashed the condo with our hundred bottles of supplements, we consumed an ungodly amount of quinoa, we shared a bed at the clinic, and I learned she has an aficionado for taking pictures of me while sick-sleeping.
She has more, but honestly two is enough. We had a blast, and I already miss my amazing sister who displayed her bravery, warrior spirit, and determination to beat her illness while undergoing the grueling treatments. She’s amazing. I’ve always used a positive attitude and laughter to cope with my own illness so it was great to spend time with someone who can indulge in your same mindset with you. Love that beautiful french girl!
I also met other amazing fighters at that clinic… and if I may be so serious, if any of ya’ll are reading, you’re awesome. I’m so glad I got to meet you and briefly be inspired by all of your stories and selfless attitudes. It was like watching the sick minister to the sick. Unfortunately, yes, we are all sick. But there is something special that develops in all of us through our prolonged illness. Being surrounded by people who cared beyond the sometimes shallow or hollow things the society of the healthies get wrapped up in was like being in a special sort of heaven. You all saw past exteriors and had compassion and empathy not usually found in the general public. I believe heaven will be full of people like you guys.
Other notable mentions… um, I climbed a mountain. Well, like.. a small one. Okay I went on a hike that had a moderate elevation but culminated nowhere near the top of the mountain. But let’s not diminish my accomplishment. I felt like I was going to give up the ghost a quarter of the way up. But I did it, and I got to survey the Salt Lake valley and point to the bench where my house is and bask for a moment in the small step of victory I attained in my goals to get back to my prior, athletic self.
I also cut my hair. That is a whole story in itself, but short version is simply that I made an appointment with a woman named Kennedy who turned out to be a 6’4” transvestite in a tube top and a wig who chopped off far more than I was emotionally prepared to part with, and then dyed it a color I was equally unprepared to accept. I could have ran the minute he pulled out scissors and sat in front of me to survey my hair with his legs splayed in dangerously short cut-off jeans… but I was too terrified to move. So… it happened. A week later I had it “fixed”. So… I’m a bit blonde now. It is still an adjustment, but I will own it. Ignore whatever I am doing with my mouth in that picture. I don’t know how to behave in selfies.
I also started drinking raw milk. If you guys haven’t jumped on that bandwagon and your state or general area you live allows raw, unpasteurized and unhomogenized milk to be sold, get on that. I mean… if you want. I was never in to dairy, I haven’t ingested milk in well over five years and especially since getting sick. The only dairy I consumed was greek yogurt and Kerry Gold butter (tell me you can’t eat that butter just by itself, TELL ME). Dairy and I just didn’t get along, and quite frankly, I looked down on dairy a bit if I am being honest. I was kind of a snob about it, if we want to break it down even further. But knowing raw milk to have anti-inflammatory properties, billions of beneficial bacteria, all the live enzymes and little friends milk was intended to have, and plenty of good fats and nutrients, I decided I would lay aside some of my snobbery and begin drinking a cup a day. I’m now obsessed. No stomach aches. No issues. Feels good. Go raw.
Finally, (I know right? Finally) I had it within me to wake up early and drive two hours to the Bonneville Salt Flats in Utah to catch the sunrise and have fun with a little photography. The artist in me is trying to come out again. You’ve no doubt seen these flats in many a car commercial and they are almost always dry. But recent rains gave us a rare opportunity for extraordinary beauty. My brother and I spent the better part of the morning basking in the early morning rays and soaking up minerals by wading in miles of a 4 inch-deep epsom salt bath that puts all packaged salt baths to shame. I’m sorry, I’m kind of being a bit snobby about this too. You get a little wellness back in a girl and she gets her sass back with it. Anyways, I leave you with some stunning nature. Because in spite of all the medical advances that have gotten me to where I am today, nothing feeds and heals the soul like being surrounded by nothing else but creation.
Bless your heart for reading all of this. It’s now 8 am and I need to go plan my nap for the day. Peace out.