I have Lyme. I’d like to not have it anymore. I also just want cake.
Oh hey, it’s me again. I’ve been a super bad poster. Long time no post, basically. It’s a resolution I made though… to pay more attention to this thing. I promise. I mean, I promise that I made that resolution to want to do the thing more, but not that I’ve promised to actually do the thing more. Just know, I want to post more. I want to do the thing. Hopefully that gets me points.
Anyways. So first, I picked a title for this post that probably none of you will relate to AT ALL. I’m also positive some of you clicked on it with rapid interest, thinking it was going to be bad news about me. You voyeur you.
That’s how I picture my readers sometimes and it amuses me. I’m just kidding. If anybody owns a pair of giant social media spy binoculars it is me. But so anyways, more about me and this post.
This is an update post. I personally feel like these are my most boring posts. But they are always requested. So, I give the people what they want. The people want to know how I am doing. And they shall. I also want to give hope to those asking themselves, every day, as frequently as they ask themselves what to make for dinner, “will I ever get better?” Ultimately, that’s the only reason I do these update posts. There’s way too much darkness and hopelessness out there in internet land about Lyme. Positive stories…. realistically positive stories, are needed. People need to hear about recovery, but they also need to grasp what happens in-between diagnosis and recovery. It’s not easy.
So, I can’t remember when I last posted, but I know it’s been like at least a whole seasonal weather change ago. Last summer I posted about my Babesia relapse. Since that time I’ve been following a protocol of multiple anti-malarials and anti-protozoals stacked along with my usual antibiotics. I get 2.5 weeks off all meds each month, and that’s just the wheel I’ve been putting my shoulder to since then. In general, this return to Babesia bombing made me incredibly sick again. I was taking three summer classes at school at the time, which was… fun. Something you may not know about me is that I am the kind of student most people hate. I need all A’s or I will collapse into a heap of childlike tantrums about how it is genuinely the end of the world while everyone else looks on in disgust over my academic neurosis. I am really proud of myself though for giving in to said neurosis. I think my proudest moment was taking my handful of meds and then loading up on every anti-nausea med I owned, getting myself to school and then taking a timed, several hour long essay question-based test on how the revolution of the Bolsheviks influenced communist Russia. The room spinned and my penmanship looked more and more like a 4th grader’s as the test went on and at times I nearly relocated to the floor and we also can’t even be sure I didn’t drool on my paper. But I got an A with extra credit. In fact I finished all those classes with an A and then I dropped out for fall, having PTSD about that semester and what it took for me to finish still clutching my 4.0.
Fall was just a slow and steady climb back to my pre-babesia relapse place. And a bit about the devastation of relapse or treatment setbacks. I get it. I get you. Wow, those are awful things to come to terms with – relapses and setbacks. Awful, but par for the course. I yelled and hollered. I got angry at my doctors for sending me back down the rabbit hole. I felt that my two year’s worth of blood, sweat, and tears was for nothing when I was suddenly as sick as I felt back on IVs again. I was also terrified that progress could be lost so quickly. Could I really trust any improvement? And now that the slipperyness of health was so real to me, could I ever be able to relax and enjoy life knowing that my health was potentially just a house of cards waiting for something small to sneeze near it. And guys, I did have to fight my way back to where I am again now, but this one was quicker. In reality, my doctors didn’t send me down the rabbit hole arbitrarily again. They saw warning signs before it manifested more loudly and instituted a return to more serious treatment before oblivious me saw the need. I mean, I knew I was experiencing some symptom returns, but I felt surely it wasn’t enough to warrant such a serious response. I’m so glad I’m not the one spearheading the creation of my protocols.
It took me from July to October really, to see their wisdom and to accept what had been my recent fate. Relapse and setbacks are hard things. But they aren’t always bad things. Getting it through our heads that often feeling worse, is healing, is hard. We’re taught that improvement means symptom elimination in ALL cases. We’re conditioned to apply our experiences with the linear healing of colds and flus and even many other more serious issues, with the healing of Lyme. It’s a fallacy and it sets you up for an emotionally difficult time in dealing with this. We can be feeling good, or better, and then something happens that reveals oops, we still have some more work to do… and then you have to go back and do more work. Suffer more work. It’s all moving forward my friends. All moving forward. Especially if you are on biofilm protocols. You will hit previously hidden, asymptomatic pockets and that can feel like a relapse when those are uncovered. It’s all healing processes. It really is, moving forward.
During the fall we introduced Ivermectin to my protocol, an anti-parasitic medication. You may have given this to your dog or maybe your cow if you have ever had a cow. Any cow owners out there? Just curious. I’ve thought of names I would give a cow. I also love their eyelashes. But back to Ivermectin. We experimented with Ivermectin just for fun. Just to see. I reacted quite strongly to that, and in the weirdest ways. I didn’t make me feel super sick at all, but just gave me random symptoms. Systemic itching, tachycardic episodes, bizarre spontaneous rashes, anxiety, and feeling off for up to 48 hours post Ivermectin dose. Does a rash get anymore weird than this? It lasted about two hours.
This setback in general taught me to really take things in stride. I was actually pretty impressed with this rash and wanted to show everyone. Lookatmyrash! Lyme is a lot easier when you stop freaking out about every new little thing that pops up and just accept that you are on a wild ride and things are going to be like that for a while. Ultimately, I feel Ivermectin is doing some good. My excessive histamine issues that have plagued me have begun to ease up.
Since about December I’ve noticed marked improvement from the R2BP (return to Babs protocol keep up with me here). My treatment cycles were getting easier and easier to tolerate. Signs that RBC parasite load was dramatically decreasing were popping up (haptoglobin levels returned to normal, ammonia levels stopped elevating during treatment, etc). I was bouncing back really quickly on my off-treatment weeks. We went camping in Capitol Reef National Park here in Utah last fall, like tent camping… real camping, and I hiked for hours both days, one of which was 10 miles.
I think once you start feeling well enough to try getting back out there, a little pushing yourself really helps. Besides… who wouldn’t heal surrounded by just earth, rock, trees, and zero cell towers? Plus I ate the most delicious apples and pears off those old orchard trees from long gone homestead settlements. I fought off buck deer to do so. And if a single one of you asks about my tick protection or says I should be careful eating wild fruit, don’t. Let me live.
Today is my first day back from a three-day trip to the East Coast for my latest doctor appointment. And can I just give you all a little hope for a minute:
Six months ago I was back in the gutter of the sick unable to do a darn thing. The health I saw in the future vanished like a mirage and I was in the dumps and in my more worse moments, doubted everything I had done treatment-wise. But some small part of me kept urging me to continue trusting my doctor. It was just big enough to parent the childish me that lacked long-distance perspective. It kept me going, kept me swallowing all of those meds, kept me fighting when I felt I had already fought this fight before. Today, I am back in school part time after my fall hiatus. I flew to New York City this past Monday to meet my friend Sonya from France who also sees my doctor. For the last two trips we have planned our appointments together and met each other out in DC for them. This time we flew into NYC and rented a car to drive down to DC and back. On Day 1 I got up at 3:30 am to make my flight, had a connection, total trip time 10 hours. Then I got a rental car and braved rush hour traffic alone through Queens and Manhattan to meet my friend. We spent some time downtown and then I drove us the 4 hours it took to get from NYC to DC, arriving after 10pm. That was just day 1. Over 17 hours of activity and needing to be alert. Guys, I handled it. Then the next day I handled DC traffic all day as we went to our appointments and ran around to different pharmacies for her. The third day was more errands in DC, rush hour traffic, and the several hour drive back to Newark where we stayed before flying out (a 16-hour, active day). Not without symptoms, but with functionality. For someone who started treatment being unable to read and write, let alone drive, who stayed that way for the first half of treatment, now being able to manage downtown DC and NYC traffic during rush hour on her own just fine can give massive credibility to the adage, “stick with it”. Guys, Just. Stick. With it.
*Monday night in NYC, taken by Sonya from my actual car that my previously cognitively and muscularly paralyzed self was actually driving.
As for my appointment, Dr. J believes we can safely remove some Babesia meds, leaving two in just to maintain (I’m not ready to part with my beloved yet hated Daraprim). I’ll continue my usual antibiotics, add a brand new one, and remove another. My immune system is showing signs of reconstituting and while that is giving me a few new symptoms on my off weeks, it is a very good sign. So many positive things come disguised as suffering with Lyme. Ya gotta embrace it. And with that I’ll end my braggadocios treatment update.
Oh and one more thing. Your timeline will be different than mine, but yes, you will get better.