Month 10 has been my best treatment milestone yet. After having a really rough time in month 8 and 9 on Rifampin and Rifabutin (which I don’t metabolize well), I asked my doc to put me back on the wonder-team combo that afforded me so much healing in September-December: Doxycyline and Bactrim DS. She agreed, and paired it with a new guy, Zithromax. (Previously I’d been on Cefdinir as my third).
No shocker, I did awesome on it. My symptom list is REALLY small. In month 10 I’ve lived an almost totally normal life including dating, house shopping and working way more than full time. I was able to start weaning off my muscle relaxers and I even got back on my bicycle this month!! In describing my success online, a few people even used the word “remission” with me! Now, I know that’s not the case. It’s not remission in my mind until I am completely symptom free and not requiring $2000 worth of meds every month. But I’ll agree, I am thinking of myself as a success story these days.
In addition to the antibiotic changes, this month I also added:
- Biofilm busters
- Cortisol maintenance supplements + ashwanga (stopped after 2 weeks because I was WAY too energetic)
- Digestive Enzymes from Bob Miller: So rad to finally digest and get energy from my food. I didn’t realize I was hungry ALL THE TIME before because I wasn’t properly digesting. Game changer!
All the new meds came on board without any trouble. I did have a little Bartonella herx on day 3 or so of Bactrim DS. It consisted of mild fatigue, mild head pressure and some strange sharp pain sensations in my feet that passed within minutes each time. Overall that experience lasted less than a week, and it turned into a really a good month. Let’s do the full recap.
Things I have more of in Month 10:
- The same eyes-not-focusing issue I mentioned in months 8 and 9; it’s like eye-specific fatigue
- NEW: When eyes are really fatigued, and I look downward, they sort of cross as they track down. It hurts! And my vision shakes. I had this once YEARS ago (attributed to my MS) but it went away. Hoping it will do so again. Prism lenses still help.
- Ringing ears – this remains constant, but a few louder days this month.
- Some off / on trouble sleeping… as usual, I over index on energy.
THAT’S IT!! That’s all!! Things I have had recently but weren’t around this month were:
- Pressure in right ear (maybe had once or twice, but barely noticeable; clicking and popping remained in ear when congested)
- Jaw pain
- Brain fog
- Numbness and tingling
- Joint pain
These symptom lists are getting shorter, I love that!
Perhaps the best news of all from this appointment with Dr. M was the results of my HLA genetics testing. I’d asked her to run the full panel to find out how concerned I should be about mold while I’m house shopping. (I am mold susceptible, so yup, I have to be careful… groooooaan.) BUT what was fascinating is that I do not have the HLA allels that would make me susceptible to chronic Lyme!! AMAZING! I have “mild susceptibility” to bio toxicity, which of course everyone has. Basically, this means I got Lyme circumstantially, and Lyme is a real chore to get rid of for anyone, but my genetics are the best possible combination for leaving Lyme in the dust. My doc and I marveled. Surely this must explain why I did so well with “MS” for the last almost 11 years, and why I’ve responded to Lyme treatment at lightening speed. (Well… Lyme lightening speed anyway… who knew recovery in terms of years would ever sound fast to me?!)
My treatment timeline came up in our conversation; I lamented to her that it’s proving really difficult for me to find a mold-free home at my price range because my finances are so limited by the expense of Lyme care. I explained that I was trying to find an affordable place because I have to be prepared to pay for Lyme care for 4 or 5 more years (3-5 being her original estimate for my 23 year infection). She smiled and said, “Karla, this isn’t going to take you 5 years. Look at you! You’re 90% of the way there in less than one.” I could’ve cried. We can’t know the future, obviously. But the odds are in my favor big time for a faster and more robust recovery than I originally expected, and it’s proving out in my progress for sure.
I often stop to appreciate that these days Lyme can sometimes be an afterthought for me. I popped into Metropolitan Market the other day, for example, and grabbed a yummy cous cous salad. On the first bite I was like, “omggggg this is so good, why haven’t I eaten this in so lo…. OH SHIT, GLUTEN!” Ha!! And although, I’ve been alcohol free for about a year now (since I started treatment), I’m finding I have to actively remind myself to NOT order a beer on the porch at Linda’s on these warm nights we’re having. Last summer alcohol wasn’t even a thought on my mind, I felt so shitty I’d have never even have considered a drink. It’s like Lyme disease is actually living mostly in the back of my mind these days. What a GIFT!! (I do still enjoy the warm evening patios… but with a soda and lime instead.)
Speaking of sunshine… summer seems to be arriving early in Seattle this year. I had a quick chat with my doc about what treatment is going to look like when the sun really comes out. You see, I’ve been on doxycycline since August of 2015, which means I haven’t been able to expose my skin to sun in 9 months! It’s been all long sleeves, sun-brellas and strategic street crossing in search of shade for me, and it’ll continue for May. BUT as of June, I will be switching to amoxicillin, tindamax and Bactrim DS which means I can go in the sun again! You guys… I CAN’T WAIT. I can’t wait to stand at Sounders game and not keep my hands in my pockets. I can’t wait to NOT cross the street into the shade. I can’t wait to never feel embarrassed about using an umbrella on a sunny day. I can’t wait to wear a bikini and lay on the beach. I can’t wait to ride my bike in SHORTS like a proper human!! YES!!! It’s going to be amazing. Just 4 more weeks to get through. I am SO excited. Summer 2016… I am coming for you.
Alright. Those are all the updates from month 10. Onward to Month 11 we go! No real change to the plan… I’m increasing my Zithromax dosage from 250mg 2x a day to 600 1x a day. I expect nothing but continued progress.
Wishing you all lots of love 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, removing myself from a relationship that wasn’t supporting me or my healing, and making a strong investment in a positive social network.