It’s been 4 months since my late-stage Lyme diagnosis, and I’ve had lots of ups an downs since then. One thing I’ve come to learn is that the path to wellness is not at all clear, and is probably different for each one of us. This month, I added a new modality to my own treatment: LymeStop.
I had heard about LymeStop months and months ago, shortly after I first began to suspect I had Lyme, but before I had been diagnosed. Scouring the internet for answers about why I was suddenly falling apart, I’d come across Lyndsey’s blog. Her list of symptoms, so similar to my own, are what finally convinced me that I needed to open my mind to the possibility of Lyme and get tested. I made a mental note at that time that she credited LymeStop, along with antibiotics and other adjunct treatments, as part of her route to wellness.
Once I was diagnosed, my amazing crossfit community pointed me toward even more success stories. One of the first and brightest was my friend Lisa. She also credited LymeStop as a major part of her healing, in combination with holistic therapy. This woman posts videos on the regular of her tossing big weight around the gym, she is a SERIOUS inspiration.
With those two stories, as well as those I’d come to find in the LymeStop Support and Information Facebook group, I made my appointment and waited. Desperate to stop the loss of function, I did start antibiotic therapy in July, and will be continuing that even as I follow the LymeStop protocol. It’s true, I won’t know which modality helped, if I do get well. And as a girl who specializes in running clean tests with discernable outcomes in my day job (marketing), it’s hard to accept that I won’t know which worked. But I remind myself that I am not a science experiment, I am a woman using every tool at my disposal to get well. And I personally don’t care WHICH works, just that one does!
On Thursday last week, I packed the boyfriend and my two dogs into the car and off we went to Idaho. I was skeptical, for sure. There is no scientific evidence that this method works. But then again, there is no scientific evidence that long term antibiotics work either. In fact there are no scientifically-proven suggestions at all about what I should do! And as I always say, “there are no atheists in the fox hole”. I’m willing to try a lot of things I’d never have gone for a year ago.
So. What was treatment like? It was interesting!
I had two appointments each on Friday, Monday and Tuesday, finishing earlier this week. My first appointment was the longest, during which Dr. Smith used muscle testing to determine which infections and challenges I face. This included testing for Lyme, co-infections, viral and fungal infections, parasites, and environmental sensitivities.
I haven’t ever had muscle testing before, but I understand the technique Dr. Smith used is pretty standard (it’s similar to the method described in this article). I sat in a chair in front of him, and he held my arm in his right hand while touching various substances to me with his right. By monitoring my body’s reaction to each, looking for weakness in the arm he held, he was able to decipher my issues.
He quickly caught onto my Lyme viruses, of course, and Bartonella. I am a classic presentation of each of those. Interestingly, he also quickly diagnosed a fungal infection in my sinuses. This was super heartening to me! Although I hadn’t mentioned it to him at all, I’ve had swollen, irritated sinuses for years that has been described as “allergic sinusitis” by ENTs and MDs of all kinds, but that didn’t make sense to me because all my allergy tests have been negative. Doctors would occasionally rumble about an underlying infection (and I’ve tried bunches of antibiotics) but I never improved. Maybe this will be the end of stuffy noses for me! Dr. Smith also found liver dysfunction, parasites and a Lyme virus in my heart. No real surprises there as these are common in Lyme patients. Strangely, Dr. Smith also found SIBO, babesia, mycoplasma and protomyxzoa which has never been suggested to me and I don’t exhibit classic symptoms. (Yikes – not sure what to believe there!)
After all the diagnostics, treatment began. His treatment, based on his CBT allergy treatment techniques, involves physical locating the sources of infection in your body with his hands, and then placing magnets over key parts of your brain and body to direct your own immune system to the source of infection. Each treatment is only about 15 minutes. I had two a day, spaced 3 hours apart.
After the first day of treatment, I felt really tired and had exaggerated emotions. This is a typical herx for me, but may also have been the stress of the travel, and the overwhelming experience of all that swift diagnostic work. Lyme is scary and overwhelming, it’s hard to know which are my authentic emotions and which are exaggerated by my condition. But I took this possible herx as a good sign.
During the weekend I felt pretty well! Very Lyme normal. But we took it really easy. Spent the weekend getting lots of rest, we hung out on the back deck of our lake-side cabin, took the dogs swimming, I enjoyed reading the Harry Potter series for the first time. I slept about 12 hours a night!! The quiet, not-much-to-do nature of Northern Idaho might have been just as healing as any medical treatment itself.
I had two treatments Monday and felt just fine. But after my last treatment on Tuesday, pretty epic fatigue set in. We drove home to Seattle that day, and I slept in the passenger seat. Sleeping in cars is very odd for me, so that was telling.
The day after treatment, Wednesday of this week, I felt AWFUL! I was able to go to work, but I was so nauseous that I was constantly scanning the rooms for places to gracefully throw up if I needed. (Is graceful vomiting even possible??) I felt tired, sweaty, woozy, I had heartburn, indigestion and bloating. I felt almost fluish, weak and tired. Nausea is a miserable condition, it makes it hard for me to appreciate anything else around me.
Thankfully yesterday, Thursday, was a really good day! I went to work (including a grueling commute to a far away campus – 1.5 miles of walking and an hour on the bus each way). I felt really tired and weak. Walking home at the end of the day was extremely challenging for me, as I was a bit wobbly and very slow moving coming up the hill from downtown Seattle. But other than that I felt great. I noticed none of the nausea or abdominal discomfort that day and even my ever present pressure headache wasn’t around. Nice! My eyes were extremely blurry, which I notice gets worse with my fatigue, and my ears are always ringing. But overall this was the lowest volume of symptoms I’ve had in a while. Promising!
Hard to know how things will go, so I’m just taking each day as it comes. If LymeStop goes the way they say it will, I will experience up to 6 weeks of detoxing and should start to see improvement after 3 months. I’ll be reporting on progress as I go, of course, so stay tuned.
In the meantime, here are a few fun pictures from the trip: