I just posted my story in the Lyme Success Stories group on Facebook. This is a group wherein the only people allowed to post are those “in or close to being in remission”.
I’m sitting here staring at my screen letting that sink in a little. I… me… Karla Margeson… I am close to remission. My eyes tear up at the concept even entering my mind.
I know Lyme treatment is different for everyone, but when I started, I set some rough estimations for my timeline. I said, “I hope I begin to see improvements after a year,” and “I hope I’m in remission within 3-5”. And maybe true remission (the kind where I don’t need 95 pills a day and $2000 a month to hold onto it) will take that long. But I sure as shit didn’t expect to be feeling so close to normal 10 months in.
The word “grateful” doesn’t even begin to cover it.
Anyway. I wanted to share this update here as well, and hopefully send hope back down the path to those in the thick of fighting. Hang in there.
I want to tell you about my last couple weeks of life. I am working 40-50 hours a week at Microsoft (high stress, high fun). I am house shopping during evenings and weekends which means lots of walking around, doing inspections, filing paperwork, thinking hard (and clearly). I am DATING!! I am telling suitors that I have Lyme disease and getting pretty decent responses for the most part. I am vising friends on top of this 3-4x a week. I am even babysitting my friends cats, walking a mile uphill to see them each night and then back home. I am walking 10,000 steps a day easily. I am making PLANS without hesitation. I am investing in the experiences around me. I am present in my life and not (too) distracted by my experience in my body. I am at least thinking about going to the gym… which is more than I’ve done in well over a year!
In short: I am pretty easily living a VERY NORMAL LIFE. Not to say Lyme is completely not on my mind. I have constant ringing in my ears. My body temp fluctuates way more than it should… my hands are always freezing. My muscles still get mad if I over do it (not back to weight lifting yet). My eyes are “lazy” and don’t like to focus without my prism lenses. But this is so so so minor compared to a year ago.
How bad was I, you ask? Well, I’ve been infected since 1992 (age 9). I had migraines, a year of asthma and arthritis as a pre-teen. “Carpal tunnel” for a year or two in my late teens. I got MS when I was 21 and averaged 3-4 neurological relapses a year for most that time with white matter brain lesions on MRI… that’s when I stopped thinking of myself as healthy, but I still did very well and was “normal” between relapses and I didn’t have any other health problems aside from MS. Then, in my late 20s I got plantar fasciitis and started having terrible muscle tension with many trigger points… this is when I started to lose some of my favorite activities. Finally, in “the great collapse of 2014” (age 31) I really fell apart: Hearing loss, vestibular disorder, TMJD, chronic fatigue, fibromyalgia, Hashimoto’s, panic disorder, anxiety, insomnia, heart palpitations, numbness and tingling, horrible facial pain, pressure headaches, blurry vision, night terrors, hand tremors, mania, unexplained weight loss, acne, hair loss… you name it. I was homebound for months. I measured life in seconds. Every day was an emergency. My poor sister Christy must have fielded 3-4 anxious phone calls from me each day. FINALLY someone told me I should get tested for Lyme disease, I got diagnosed properly, I got onto treatment and (after an initial rough couple months) I’ve done nothing but improve.
How am I treating?
- Under the care of an ILADS Lyme-literate doctor, I am 10 months into 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 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 rice, beans, tortilla chips, tacos and sometimes Thai food when I’m dining out with friends.
- 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.
I am blogging everything at karlafightslyme.wordpress.com.
I just wanted to share this LONG update because as I get better, I find myself visiting the groups less and less. It’s because I’m LIVING LIFE. But when I was at my worst, I was DYING for messages like these, so it’s important to me to send this back down the path. Healing is possible. Sending everyone so much love.
Want to learn more about late stage Lyme disease? Here are two of my favorite documentaries: