There are periods of your life that change you. Challenges and circumstances you face that alter your story forever. Experiences that shape who you are. This is one of mine.
Most of my friends know, I’ve become really sick in the last year. Well, what they probably know best is that I’ve gone missing. They don’t see me much anymore, and when they do, it’s clear I’m not the same. I have trouble in crowds or stimulating venues, I’m not drinking or eating like I used to, I may have trouble keeping up with the activity or even the interaction… I look tired, pained and older than I should. I’ve been in the thick of it for a while now. And when the kinder hearted folks ask what’s gone wrong, I’ve only been able to shrug and admit sheepishly, “we don’t know.”
Last month, I tested positive for late-stage Lyme disease. A diagnosis that was confirmed yesterday by a Lyme literate physician. An insect-borne bacterial infection that can devastate any system in the body as it pleases, this is a huge upset in the storyline of my life. And an important and exciting discovery in my fight to get well again.
Why a huge upset you say? Well it changes a lot about what I thought I knew. I thought I got sick in October of 2014, but it turns out this oft-underestimated bug is likely behind many of the illnesses and health issues I’ve had over the last 20 years. Asthma at 11, migraines at 12, arthritis at 13, extensive dental troubles at 14, carpal tunnel in my late teens, major knee surgery at 20, and even probably the multiple sclerosis I was diagnosed with at age 21, and of course the myriad of issues I’ve had the last 10 months. This has been missed for over twenty years while the bacteria has been left to replicate in my system every 28 days.
The infection at this stage is very advanced, impacting the function of my muscles, my joints, my eyes, my ears, my heart, my lungs and my mind. It will be a very difficult fight to regain my health. But!! I believe that I am finally fighting the right thing. And I’m ready to fight like hell.
Why did it take so long to get the right answer? Well, my friends, I am sad to report that on this subject the system is hopelessly inadequate. Just like the HIV debate of the 1980s, there’s dissention among the experts about what Lyme disease is really capable of, how it’s transmitted and how to treat it. And unfortunately the camp that says Lyme disease is no big deal is better funded and has better political ties. They write the treatment guidelines that the CDC follows, that insurance companies use to make decisions about funding patient care and that allow the federal government to prosecute doctors who don’t follow their recommendations. The other camp that serves hundreds of thousands of patients just like me, lead by ILADS, knows better. They recognize late stage Lyme disease and are working to educate physicians and the public so that fewer folks end up like I have. But patients are caught in the middle. Most doctors won’t recognize our symptoms, they’ll tell us Lyme disease is no big deal, they’ll run the wrong tests, or they’ll run the right ones and give you horribly inadequate treatment and tell you your lack of recovery is simply psychological. Educated, effective doctors are out there, but they keep a low profile and they can’t accept insurance. It’s a mess. (Good documentary here, btw.)
Now that I’ve been educated, it’s clear to me when I contracted this disease, it’s clear to me that it’s flared up in new ways every few years for the vast majority of my life, it’s clear to me that it turned dangerously neurological in nature on June 5, 2005, it’s clear to me that it’s responsible for the destruction in quality of life that I’ve suffered this last year and it’s clear to me that every doctor I’ve seen in the last 20 years missed it. Am I mad? You betchya. But not at anyone in particular. The doctors who’ve treated me over the years, they did the best they could. They are only as good as the information provided to them. And that information isn’t good enough. Besides, I found that anger has never really served me well anyway. So enough of that.
What I choose instead is hope. I finally have a proper diagnosis, I’m working with doctors who know what they’re doing, and so long as I can find a way to fund my care out of pocket, I can fight.
The other exciting change in this story is that I could get well. There’s no guarantees, as the fight is long, difficult, expensive and often harrowing. But, if I can beat late stage Lyme disease, it’s possible I could lead a very long and healthy life – possibly even free of many of the diagnoses I’ve collected to date, free of MS, free of thyroid disease, free of the muscle pain, the blurry eyes, the ear trouble, free of all that’s held me back. It’s a radical change in perspective, and one too promising and scary for me to feel comfortable embracing just yet. They say the longer you’ve gone untreated, the harder the bacteria is to control. 20+ years sets a high bar for me. But a high bar has never scared me before in this life, and I don’t intend to let it scare me now. I’m just going to fight like hell and see how far I get.
The world needs more late stage Lyme success stories. I plan to be one. I will document the journey here on this blog. For those curious, I invite you to follow along!
Let’s do this.