My first year of treatment: DONE!!! Wow. What a year. I am doing sooooo much better at this point than I ever expected to be. I’d say, most days, I am 85-90% recovered. This last month, though, has been oddly difficult health wise. And only sort of tangentially because of Lyme. I had 3 sort of big / strange health things happen this month.
First, was an aural migraine – my first in a very very long time. I had just started my month 12 Lyme protocol, which included a few changes to supplements and probiotics but no big medication changes. Nothing that should result in any herxing, for sure. Anyway, having just downed my morning supplements, I was walking through downtown Seattle to get to work when all of a sudden a bunch of holes appeared in my vision. I couldn’t make out street crossing signals, parts of cars were just sort of missing and when I looked at the road ahead of me, nothing really made sense. I focused on putting one foot in front of the other and, although terrified, I finished the remaining half mile of my walk. I stopped into a Starbucks in my office building and ordered the biggest ice coffee they had. Already suspecting this was a migraine, I remembered caffeine helping when I got headaches as a wee kiddo. Sure enough, within an hour of sitting in my cubicle, my vision returned to normal and deep intense nausea and head pain set in. Yup! Migraine.
I ended up tracking this back to a Colostrum supplement my Lyme doc gave me for immune boosting. Colostrum = breast milk. Milk = HORRIBLE for Karlas, and is a well-known migraine trigger. I quit that supplement immediately and haven’t had any recurrence of this issue since.
(Side note: I’m trying really hard not to be upset that nobody EVER suggested diet modification to me when I was struggling with migraines every few weeks from age 9-18. Stay in the present, Karla.)
The second weird thing I experienced this month was INTENSE bloating. I had 3 episodes of this in the first week of my new protocol. Always in the evening. The bloat would come on sort of subtly during the late afternoon (during which I chastised myself for bad eating habits and called myself fat over and over) and by bedtime I looked and felt 6 months pregnant (chastising stopped – this clearly isn’t me getting pudgy).
This was suuuuper uncomfortable.
I had some similar, but less sever, gastrointestinal distress months ago when my doctor put me on Florastor probiotics instead of Ortho Molecular brand Saccharomyces Boulardii, which was a switch she’d done again this month. Wondering if this wasn’t the same issue, I swapped Florastor for my usual Saccharomyces Boulardii supplement and sure enough, bloat gone. I have a couple theories here:
- Florastor seems to use a different formula (and maybe quantity) of Saccharomyces Boulardii probiotic that maybe my body doesn’t do as well on
- Florastor also contains Lactose (milk) and while it says it’s ok for Lactose intolerant folks, it may just not be ok for me
The third and by faaaaaaaaar most terrible thing that I had happen to me this month was debilitating back spasms. As you know from my previous month’s reports, my back muscles have been tightening in the last 7-8 weeks. I had a theory in there about cortisol being a little high while I embark on an exciting new romantic adventure in my life. Well, the muscle tightening continued and then one night… whilst sitting at my desk playing video games… my low back muscles (specifically my QL muscles on the left side) tightened ALL THE WAY UP until I could no longer sit or stand. I put myself to bed, and by the next morning, I was calling in sick and crawling into urgent care for help. Fortunately, Zoomcare is in my apartment building… how great is that?!
I spent about a week lying flat out in bed taking muscle relaxers and Advil just to get by. I couldn’t even roll over in bed without using my awesome steel rod bedframe to pull myself up and over with my arms. There was a lot of crawling to the bathroom that week, a lot of grunting and effort to reach something two feet to my left… and, let’s be honest, a lot of screaming and crying. I had friends coming over to walk my dogs, supervise me in the shower, help me change clothes and take me to my active release therapist. This was PURE HELL.
I am on day 12 of this injury now, and I am doing much better. I can lay down without pain, I can roll over, I can get up and walk… I can stand for short periods of time. I still cannot sit comfortably at all.
Apparently this is all very normal. The vast majority of people will experience this injury in their lifetime. Most will be 80% recovered by the end of 2 weeks and see full recovery in about 6, which it seems I’m exactly on track for. Each doctor I see has a different view on why this happened:
Urgent care clinic doc: You’re human, you’re tall (6’1”), you have a desk job.
Active Release Therapist: You’ve de-conditioned this last year and a half not working out, you need to build up core strength again. You may or may not have a bulged disk (sitting difficulty is a telltale sign of this).
Lyme doctor: You have toxins built up in your back, happens all the time (cue my skeptical face).
Theories #1 and #2 hold the most weight for me. The internet tells me that stress hormones and inflammation are both contributors to this issue as well. And thanks to Lyme, I know that I’m over indexing on both. In any case, I am confident that with active release therapy and limiting the time I spend standing still and sitting, this episode will be over within the usual timeframe. Once I’m through this acute episode, my plan is to start a workout regime all around building my core. It might be worthwhile for me to look at additional ways to reduce inflammation as well, though I feel like I’m already doing so many. Le sigh.
In the meantime (to deal with the supposed toxin buildup), my Lyme doctor did have me cut all my Lyme meds in half about halfway through month 12. Then 3 weeks into month 12, I quit 2 of the 3 antibiotics altogether to prepare for a medication change on June 16th. In the time that I’ve been on decreased meds, I’ve noticed a couple symptoms returning:
- More joint pain: elbows, wrists, knees and right ankle
- Vivid dreams, but mostly pleasant recently which is a nice change
- Increased head pressure: swollen, itchy sinuses and very mild pressured ears
For the official on-treatment symptom list this month I’ve got:
- Ringing in ears (no change)
- Tight muscles which lead to the back spams
I saw less of this month:
- Poor sleep – in fact I easily slept 8 hours and even slept in on the weekends 🙂
I’m calling this month another success even though it was rife with random trouble. Actual true Lyme symptoms are still decreasing. For month 13, I will be swapping out doxycycline and Zithromax for amoxicillin and tindamax. This means I can go in the suuuuuuuuuuuuuuuuunshine!!
I have been on doxycycline for nearly 11 months. I’m not going to lie, I’m nervous to go without it! But the thought of lying out at the beach, riding my bike in a TANK TOP, and enjoying a windows down road trip with my fella all make the risk worthwhile. I mean, if my health tanks, I can always cover up and get back on doxy.
Those are all the updates from here! Wish me luck with this back. Once that’s settled, I think I have a very very fun summer ahead.
Wishing everyone lots of peace and healing.
How am I treating? It takes whole-body healing. Here are my areas of focus:
- Under the care of an ILADS Lyme-literate doctor, I am following the Horowitz protocol: antibiotics, supplements and some herbals. My best meds have been doxy, cefdinir and bactrim (for bartonella, my only known co-infection).
- In month 3 or 4, I did LymeStop in Idaho, and while I am skeptical that it was healing, it certainly may have helped. I did one follow up visit 3 months later and I did not take his supplements.
- I had my 23andMe results analyzed by Bob Miller and am following his supplement plan in addition to supplements from my LLND.
- I follow a strict no dairy/egg/wheat/sugar/alcohol/caffeine diet (I am sensitive to eggs). I eat paleo type meals for my “core” meals, but I do also eat things like rice, beans, tortilla chips, tacos, thai food and the occasional vegan / gluten free pizza when I’m dining out with friends.
- I promote detoxification with Epsom salt / baking soda baths, exercise to keep that lymph moving, lemon water every day and a diet that skews alkaline.
- I have done “emotional cleanup” in my mental health life, including CBT therapy to address thought patterns that don’t serve me, letting go of a partnership that wasn’t supporting me or my healing, and making a strong investment in a positive social network.