Month 13. I feel like I’m describing a toddler’s age! But it makes more sense than “Year 1, month 1” right?! Anyway. It’s mostly been another good month, I’m happy to report.
The big primary change in treatment this month was that I stopped Doxycycline and Zithromax and changed to Amoxacillian and Tindamax. I have stayed on Bactrim DS for bartonella. The change to Lyme meds meant I could go in the SUN! Thank GOODNESS! I have definitely made the most of that change in recent weeks, enjoying a trip to Palm Springs with girlfriends, laying out at the beach with my fella, and biking absolutely everywhere in a tank top. (BIKING! More on that later…)
Perhaps best news of all is that I did not lose any progress getting off Doxy, which has been a fear of mine. I had zero return of old symptoms! Yay! I feel VERY lucky. I did, however, herx getting onto each med. On day 2/3 of Amoxacillian I felt:
- Increased jaw pain (mild)
- Head pressure especially on right side (mild)
- Hands falling asleep / going numb easily
- Numb patches on my feet that came and went
- 1 night terror
The good news is, this passed really quickly. It was over by day 4 or 5. Phew. As for Tindamax, I was pulsing 4 days on with 3 days off, so I didn’t herx consistently; I herxed for the toward the ends of each pulse in week 1 and week 2. During the cyst busting herxes, I experienced:
- Very slight wooziness and dizziness
- Overly tired 1-2 days each herx
- Mildly overly emotional
Overall, these issues were mild and VERY short lived. By my 2nd week on the new protocol, I was feeling pretty darn good and was back to all activities full steam. Actually, even more activity than usual.
That isn’t to say that it’s been a symptom free month, though. Here in month 13, I have two remaining symptoms on the list:
- MAJOR muscle issues including spasm, knots and pain
- Ringing in ears
Now, I’m suuuuper stoked that I only have two symptoms left on my list. But the muscle issues have been really troubling. For one, I hadn’t had them in recent months, so they’re back and I don’t really understand why. As you know, I experienced a full low back spasm in month 12 that disabled me for over a week, forcing me to lay flat in bed and call friends for help. Well, when that happened, my Lyme doc said it was a buildup of toxins, which I rolled my eyes at and dismissed as hippie shit. (HAHA) But when I visited my active release chiropractor (who is neither Lyme literate NOR a hippie) about the trap issues this month, she brought up on her very own that toxins are often stored in soft tissues and that could very well be the cause of these spasms and knots. (Insert Karla eating crow here and totally feeling like an asshole.) But this is good news, because I think any buildup of toxins would be related to die off. And I am ALWAYS down for die off because I know it’s moving me closer to wellness. So let’s hope that’s the reason for my challenges in this area.
The main reason I find the muscle issues so troubling is that they’re really pretty disruptive! Thankfully in month 13, the issue has been more localized to my traps, which isn’t any more comfortable than the low back spasms were, but I don’t lose as much mobility. Knotty/spasming traps make it hard for me to turn my head, to carry things, or to lie down without pain, and they generally mean I’m living with a fair amount of pain constantly which is just distracting, makes me less present in life and generally bums me out. But at least they didn’t totally disable me the way that low back spams did. The big difference is that the trap problems haven’t been as acute as the low back was – low back came on suddenly and was gone completely within a couple of weeks. The traps are definitely an ongoing issue. I’ve had to run to massage therapists and my active release therapists at least weekly with sudden unset of emergent level symptoms. This means I’m spending extra money, missing some work and bagging out of social activities and generally just being totally inconvenienced. All things I’d like to have NOT happening. Each time I get body work done, I feel better for a couple days, then it flares again suddenly, without any known provocation I can identify. Keeping up with it feels a bit like a full time job.
For this reason, my Lyme doctor has switched me to a combination of meds that she claims are “more muscley”. My protocol for month 13 includes the killers Biaxin, Plaquenil and (still) Bactrim DS. Hoping for more resolution of these back spams and painful knots soon.
In the meantime, here are some things that are helping me stay functional:
- Use of the Trigger Point Therapy Workbook and trigger point self massage tool
- Using a lacrosse ball to roll around on traps and target knots; here’s a good tutorial on how to do it
- Massage with someone who will PUMMEL those knots
- Active release therapy and chiropractic adjustments (I go to Active Seattle)
- Use of a TENS unit
Ok. Now for the REALLY good news… this month, I have achieved a higher level of activity than I’ve been able to do since September 2014! Because of Lyme and related issues, I went one year and 10 months without any real kind of exercise beyond walking to work and back (and even some days I couldn’t manage that). But this month, largely inspired by a desire to help my back issues, I’ve added in:
- Bodyweight core strengthening exercises
- Spinning classes (45 min high intensity)
- Yoga classes
- ONE hot yoga class
- Biking absolutely everywhere all around Seattle (longest ride so far was 8.4 miles at about 10mph)
This is a huuuuuge moral victory for me and I feel like I’ve gotten part of “old Karla” back. In my first class… a spinning class… I literally cried tears of joy. Thank goodness the amphitheater is dark and I was sweaty enough that the water from my eyes didn’t stand out. Heh.
And riding my bike is the thing that means the most to me right now as far as activities go. You see, as long as I can remember, I have always wanted to be a bad ass lady cyclist. I like the freedom, the challenge, the ease of getting around, heck I even like the look and style of my bike and bike related duds. I just feel so happy on my bike.
I had bought my road bike just before I got really sick. I had managed to ride it only a few times, mostly because I haven’t ridden since I was probably 11 years old, so I’m a little wobbly and not very confident. I was scared to do something that I’m not yet good at, scared of making a mistake or looking like an idiot. How silly. Now that I’ve lived through Lyme, I have a newfound acceptance of looking like a total dipshit. Lyme held me back from so many activities for SO LONG. I will never again pass up on an activity I want to pursue because of fear about whether or not I’ll be good at it. I’ll never again take my abilities for granted like that. And I know better than ever that there are much worse things to fear than looking like a beginner (especially when you ARE a beginner!)
BUT that’s all changing now. Having survived the spin class pretty well, I started riding around my neighborhood. Then the nearby trails. And now, all through the city. Yesterday, I rode all around Lake Union just to see how fast I could do it. I’m riding alongside traffic, getting better at signaling, even doing some pretty decent hill climbs! Not only is this a huge physical accomplishment for me, but it’s also overcoming my fears and fulfilling a longtime life goal. I could not be more excited about this addition to my life.
So, what’s new for month 13? Well, we did the med change. I also ordered a vitamix and a spiralizer and am working on getting more raw, whole veggies into my body. I’ve also got a new supplement coming from Bob Miller that’s going to help me address some free radical issues. But other than that, it’s just more of the same.
Thanks for following along. Wishing you all good health out there!
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 , 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 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 romantic partnership that wasn’t supporting me or my healing, and making a strong investment in a positive social network.