Lyme disease is hard.
When I was just newly diagnosed and talking to people about treatment, they’d all say things like “You’ll find what works for you,” or “You’ll try everything and a third of it will work.” I didn’t really understand this. Why don’t you just take the medications to kill the bugs, and take some others to build up your immune system, eat clean to prevent their replication and wait to get better? Simple enough.
I’ve decided that fighting a Lyme infection is a lot like playing pinball. Only, you’re the ball. You fly REALLY hard and fast in one direction, then get knocked down. Go in another direction, get knocked down. Yet another, smacked down. And you just keep going. You never really find a path, so much as many different paths, and hopefully you eventually reach your goal.
I hit my first major wall in treatment. A wall I now can define: Intracranial Hypertension.
You see, I’ve failed on two antibiotics. I’ve succeeded on 3 others, so I’m try not to beat myself up too much. But the big guns, the important ones, I can’t seem to tolerate.
I was on minocycline for about 7 weeks before I cried mercy. After my 3rd dose, and every day after, Minocycline created terrible pressure in my head, and terrifyingly, behind my eyes. It felt like someone was blowing up a balloon from inside my head, and that balloon was plugging my ears, pushing on my eyeballs and putting pressure on my jaws. It was a really awful feeling, and I knew right away instinctually that it was dangerous. My doctor told me this was just a herx reaction and to keep at it. But when my vision finally became so bad that I couldn’t see clearly more than a foot or two in front of me, I quit.
In response to my exasperated pleas, she switched me to doxycycline. I waited a few days between quitting the old med and beginning the new, needing the break. My vision cleared up a lot and the pressure eased, thank goodness. But upon taking Doxycycline, the exact same thing happened. This time the vision wasn’t as bad, but the pressure much much worse. I only made it 3 days before I quit that one. My doctor still hasn’t returned my call.
Trying to figure out what was wrong, I started reading up on side effects of tetracycline (the family of drugs mino and doxy both fall into). There it was: Intracranial Hypertension. I searched the internet. And I related, hard. Only, strangely enough, I related not only with the symptoms I’m having now, but also a LOT based on symptoms I had long before I started any of these drugs. Intracranial Hypertension can manifest as things like:
- Plugged ears (!)
- Vestibular challenges (!!!)
- Dizziness / vertigo / balance trouble
- Jaw pain and TMJD (!!!)
- Pain at the base of the skull (!)
- Trouble laying on your stomach (ears plug up, pressure builds)
- Wooshing head when you bend over
- Black out eyes when you stand up
- Optic neuritis
- Pressured, swollen sinuses
Holy macaroni! I’ve had ALL of these! I remember first reporting some of these to my neurologist 10 years ago. He said it was just MS, although that never made sense to me because it was clearly a structural issue rather than a neurological one – I could make this happen depending on my position or activity. I also can’t help but wonder if IH (as it’s called) may also have played a role in the sudden hearing loss and vestibular damage I experienced last fall. Or the plugged ears I had for months that followed. After all you look up intracranial hypertension and what’s listed right there as a cause? LYME DISEASE. Grrr. The way I figure, I’ve probably had borderline high IH for years, mostly tolerable, sometimes not, and taking these meds just pushes it way above the usual line. In a way, this is good. Maybe I never would’ve figured out and named this dangerous condition without being pushed that far. At least, I’m trying to see the silver lining.
In any case, this is a challenge. It’s going to mean certain Lyme medications – those that are known to increase intracranial hypertension – will be either off limits or really challenging for me until this gets better under control. From what I hear, a good IH doctor is harder to find than a good Lyme doctor. And most IH doctors don’t believe in Lyme, and most Lyme doctors aren’t familiar with IH. SIGH. My first stop is going to be a Lyme-literate eye doctor here in Seattle. He can check out my optic nerves and measure the pressure and hopefully a) confirm that this is what’s going on, b) help monitor and preserve the state of my fragile and very damaged eyes, and c) maybe help solve the problem? We’ll see.
I am the pinball. I hit my first wall. And at least I can see where I’m headed next.
But Lyme disease is hard.