As the leaves turn yellow and orange and begin their descent to the ground, as the sunshine hides away earlier and earlier each night, and as the temperatures begin to climb lower and lower I am reminded of all I had looked forward to in the last year. I spent so much time during the very cold months in anticipation of the warm sunshine cascading across my skin, daydreaming of the different adventures I could partake in.
This spring, as the first signs of life began to emerge and green buds filled the barren trees, I went on a brief outing hoping to find giant ostrich ferns beginning to unfurl.
I made the mistake of venturing just beyond the gravel lined parking lot, to where a few pieces of grass had overtaken the ground. This is where I picked up a tick carrying a disease that would quickly take away all of those dreams I had for summer.
I had picked out a delightful little shack overlooking the Bayou in Louisiana. If I could just figure out a few more travel arrangements and find flights or bus routes that wouldn’t totally compromise my health, I would be on my way to a few week long escape to warmer weather and beautiful sunset views.
At this point, I’d been inside almost completely secluded for just over a year. I was peering into a brief window of time where travel would be safe, and although I’ve long dreamt of wandering the streets of New Orleans I decided it would be better at least for my first trip to play it safe and pick an isolated location.
But a strange feeling hung over me.
Maybe I’d wait just one more week. I surely had a few doctor’s appointments coming up and some to still schedule, I should wait and make sure everything got scheduled before running away for a few weeks.
The symptoms began rather immediately.
It started with an untimely muscle spasm that frankly scared the shit out of me. It progressed to almost a total loss of function of my right arm, and I spent the first month of summer trying to get answers.
I wrote about that process here which goes into a lot of details of my original symptoms if you missed my article from early July.
In short summary, once the paralysis of my right arm reached the point where I couldn’t even manage to scroll on my phone we went to urgent care where they began me on two weeks of doxycycline for what they believed was Lyme disease.
Unfortunately, with the arthritis complications, my doctor when following up also put me on a steroid taper. This essentially canceled out the doxycycline treatment and I only had a mild improvement.
I spent the second half of June avoiding the outdoors, hiding in the shade as the medications made me more prone to serious sunburns.
Unsure where to go from there and with a negative ELISA (lyme) test, we ruled out further treatment for Lyme. But with my symptoms not improving, I operated under the assumption it must be an arthritis flare which lead to more tests and physical therapy.
Due to the abhorrent encounter I had with a locum Rheumatologist – who despite being right about it not being arthritis – I wrote about the progress so far. And in doing so, a few people connected with me in support of continuing to seek out a Lyme diagnosis and additional answers.
We did another steroid taper.
I gained 5 pounds.
A bit into July I had my nerve testing, which was an interesting experience. They electrocuted my arm in various places and also did a needling portion to evaluate my muscles. I think they were looking for both nerve damage and muscle deterioration as an explanation for the dramatic loss of function in my arm. I passed the tests with flying colors.
Most notable however, was my encounter with the Neurologist who did the testing. We had a lengthy conversation about my symptoms and my general frustration with both migraine care and arthritis care and she urged me to continue looking in to tick borne illnesses despite my negative test results. To her, my presentation was something she’d seen almost verbatim with a patient a decade earlier who had a different variety of infection.
I started physical therapy that week as well, my range of motion had gone down from my evaluation months prior. My physical therapist’s evaluation was that I had a postural muscle injury and we’d have to work to relieve the large knot in my upper back/neck before we could even begin introducing exercises to regain strength and range of motion.
I’m fortunate to have someone in my family who has experience with Lyme disease, so they were able to help me understand what I needed to look for in a doctor to get better answers and some insight into some options for treatment and management – long term and short term – that I may find valuable.
I learned pretty quickly that Lyme is heavily disagreed upon in the medical field and that seeking care meant leaving options covered by my insurance.
The first place I called wanted almost $2000 just for the initial appointment. Not exactly feasible for someone already living on disability.
I located another facility – The Tick Borne Illness Center of Excellence in Woodruff, WI – that was much more affordable at only $250 and who was able to submit all labs and testing to insurance. This is a well renowned clinic that also serves as a research center in an area that is quite heavy with Lyme disease. Because I was so recently bit and experiencing symptoms, they were able to squeeze me in within the week.
In the middle of July, 55 days since the onset of my symptoms, I made the trip to see the Lyme Literate Doctor in Woodruff, begin treatment, and get more advanced testing done.
There was a lengthy symptom questionnaire to help position my symptoms into a category evaluating the likelihood of them being Lyme disease. The point system gave me a score of 69, putting me in the top category of 45+ points indicating a high probability of Lyme disease. Of course, many of my symptoms overlapped with both my migraine and arthritis diagnosis that it was hard to separate at this point what was what.
This doctor’s visit was incredible. I felt fully listened to and felt as if all of my questions were answered in a way I could understand them.
At this clinic they don’t wait on unreliable tests to confirm if you have Lyme disease to begin treatment. They treat based off of symptoms and try to take an aggressive approach – the doctor called it “nuclear” – in order to attempt to eradicate the bacteria. Since I was in what they considered an early stage of the disease we were all very hopeful that a long course of antibiotics would suffice.
We would also go ahead with ordering what’s called the iGeneX testing (which thankfully Medicare covers) which has a wider range of tick borne diseases being tested for, in addition to their version of the Western Blot which shows different bands that are often present in infections.
The explanation this doctor provided regarding the testing was really useful. The most firm way to diagnose Lyme disease is with the presence of the bullseye rash that forms in roughly 60%-80% of Lyme patients, with estimates even lower suggesting it could be only 27% of patients that ever have a rash. A control group of 200 people with Lyme disease and the rash were given one of the tests looking for antibodies to Lyme. Only 50% of them yielded a positive result despite 100% of them having Lyme disease. This demonstrates that the testing that we have is an unreliable indicator of the disease.
This is important for a few reasons, the first being the obvious “this test cannot be used to rule out disease” notation on the tests that most doctors ignore. And the second being, most doctors cannot order the more advanced Western Blot test if your ELISA test is negative. Meaning a lot of cases get missed because the guidelines for treatment do not match the disease. Which is what happened in my case.
With my presentation of symptoms we opted for a 6 week course of Minocycline in combination with a very strong probiotic to help continually introduce good bacteria into my system as we nuked my body.
We would follow up at the end of the 6 weeks to decide if additional treatment was needed.
Getting Through Treatment
One of the initial “risks” of treating Lyme is what’s known as a herx reaction. It’s basically the disease getting worse before it gets better as a result of a mass bacteria die off – if I’m understanding it correctly. This reaction would be unpleasant and would indicate the possibility of my Lyme disease not being due to a recent tick bite.
I didn’t have any signs of herxing.
I did however feel really yucky. With all of the medications and stipulations as to what you could and couldn’t eat with them – like no dairy – my diet was completely messed up, and in turn so was my IBS.
Leading up to this time frame a lot of my symptoms had changed.
The most prominent one was the loss of function in my arm and the regular feeling that my arm would begin spasming if I used it.
This was accompanied by extreme fatigue in both arms and worsening joint paint and stiffness in my wrists, shoulder, upper neck, and knee.
The upper neck stiffness began to shift towards a horrible new migraine sensation. Probably best described as a tension type headache made worse by unstable weather patterns. The muscles that connected my neck to my skull were visibly swollen and sharp pain would often radiate from them. They were always tender. On some mornings as I would stretch I could feel those muscles making almost crunching sounds followed by sharp piercing pains. These migraines didn’t respond to medications.
The muscles in my back as well were in a world of hurt. The neck tension around my shoulder blades and down along my spine was unbearable. I was constantly applying creams and attempting to massage out the knots.
I was not myself and I felt as if I’d lost all control. I would spend entire days just sitting, existing but not really.
The first week on the antibiotics I struggled a lot between my internal bacteria adjusting and my congestion seeming to worsen. I was constantly nauseous and had nothing in me to try and cook or keep myself fed. My appetite was completely gone.
By the second week I began seeing signs of improvement. I was still working with my physical therapist and we began shifting towards exercises. I had distinct notes that the strength was returning to my arm and was able to take on slightly more hands on (literally) projects like the tile work in my kitchen without too much discomfort.
Week three however took a slight turn. All of the progress I’d been seeing wasn’t incredibly obvious until the first weekend in August arrived and I suddenly was met with a return of the fatigue in my hands.
I was baffled and felt defeated despite the same weekend getting the results for my IgeneX tests. They were relatively inconclusive with only one positive band and some inconclusive ones. However, band 23 was one of the critical markers specific to Lyme disease pointing to the presence of a recent infection.
That Monday, I began having a strange reaction. My tattoo was itchy and my scalp had been a bit itchy too. Then, that night about an hour after having taken my antibiotic I was covered in hives.
Now, at first I didn’t think much of it, because of my houseplants I have gnats and when they land on me I react with a small hive or two. But this quickly evolved into my entire stomach breaking out into very raised and spreading hives.
Despite taking a Benadryl, by morning the itchiness returned.
It was one of two things: a sudden shellfish allergy (I’d eaten a yummy shrimp salad two nights in a row), or the antibiotic. I was instructed to discontinue the medication and see how I did over the weekend.
Now it isn’t super agreed upon regarding the minocycline being the allergy source but with all of my knowledge of how medicines work and build up in our system plus the heavily documented “allergic reactions can occur after 2-3 weeks” I don’t doubt that the allergic reaction was to the antibiotic. My shrimp allergy test was also negative.
The way immune systems work and antibiotics, this all makes sense. As my Lyme symptoms suddenly got worse, I’m guessing my immune system shifted focus from the bacteria to the medication itself allowing the Lyme to continue wreaking havoc.
We switched my treatment plan to Amoxicillin for the remaining half of my treatment duration.
Despite these pills being absolutely monstrous, I wish we’d started with them. Not only did they cost mere pennies, but they didn’t have any dietary restrictions to go with them so I was able to attempt to get back on track with keeping my gut health semi-regulated. They also didn’t pose the same risk with sun exposure, so I finally had the opportunity to go outside and enjoy the now fleeting moments of summer.
By mid-August I noticed that the miserable tension type headaches were gone along with the subtle tenderness that had taken up residence at the base of my skull. Within another week, I tackled a feat I had failed to do back in early July: I painted my living room.
This was a huge win for me. Not only did I re-arrange furniture, but I did all of the edging and painting and clean up on multiple days in a row without my hand and arm seizing up like they had at the mere attempt to hold a brush in July.
Even more noticeable was the reduction in my migraines to the lowest point in two years, which also came with clear evidence that I was responding to my abortive treatments again.
However, the allergic reaction I had at the beginning of the month developed into something further: dermatographia. I had hoped that as the minocycline left my system, so would my persistent itching. Another area of medicine that doesn’t have a whole lot of research or answers. It was much worse in the beginning and I could visibly draw on my skin to evoke the allergic reaction. My allergist had no advice so I essentially have to take Allegra every day to manage what is now mostly morning scalp itchiness.
Again, this is an area with minimal research or agreeance from doctors but there’s patient communities out there with a strong overlap of people who developed dermatographia after having an allergic reaction to an antibiotic or had the exact opposite experience where their dermatographia cleared up upon starting an antibiotic. I’m guessing it’s some sort of immune system overreaction that isn’t heavily documented due to how infrequently we rely on long term antibiotic use.
As August came to an end, so did my physical therapy.
I graduated PT with flying colors. I had gone up in intensity in the exercises we were doing, while meeting my goals to return to perfect range of motion. Despite how I ended up in physical therapy, I think this was a much needed complimentary program to my Lyme treatment to make sure that as the Lyme disease went away that I was eased back into exercise in a way that would be safe and guided. I don’t believe the physical therapy had much bearing on my physical health improvement though.
I finished my course of antibiotics in early September and for my final course of treatment we’re doing an herbal supplement called Microbinate. This blend of herbs helps to kill of bacteria that may have become resistant to antibiotics while also offering a variety of immune support and anti-inflammatory benefits.
Despite most of my symptoms being gone – which again is impossible to tell due to my other conditions – my Lyme doctor wants to really ensure the Lyme disease is fully eradicated, so this herbal supplement works as a “lets be sure” for a few months.
As long as my symptoms don’t begin worsening again, I am free to go out and enjoy my Fall and never follow up with the Lyme doctor again.
I think I beat Lyme disease, despite it feeling like Lyme disease beat me.
I do continue to have some shoulder stiffness and arm pain. But now as we move into a new season, it’s really hard to say if it’s mild arthritis flares or persisting Lyme. I’m inclined to believe it’s arthritis just doing what it does since each incident has correlated to weather changes. Yet, it remains slightly nerve wracking.
So now I prepare to enjoy this lovely month of October and try and find little ways to celebrate my birthday before settling in for another long cold winter.
I know I’ve been quiet here, and much of that was because of the Lyme and then the subsequent rush to get everything done/rush through doctors visits that had been postponed and then deal with the side effects from all things postponed.
But that’s my long awaited update. It was Lyme. Thank you to everyone who reached out and encouraged I keep digging. I can’t imagine where I’d be if I didn’t take that advice.
If you’re looking for ways to support my medical journey or just say happy birthday I’ve had to change up how I accept support. Due to personal reasons, I have stopped my Patreon for the time being, but I have an Amazon wishlist I update periodically of things I need or would like. Health items of high priority are bumped to the top. I also made a silly birthday list.