Saturday, February 26, 2011


Nothing has ever tested my patience as much as this, now. Treating Lyme is not an overnight thing. I need to remind myself on a regular basis that I'm not wasting time by being unproductive, but rather, taking the time to recover.  

Ever since I started treatment, I've become progressively sicker each day. (A reminder: that's a good thing. It means it's working.) My sleep schedule is more screwed up than ever, my brain is more foggy than ever, and I'm experiencing trippy sensations like feeling as though my arms are detached from my body. My skin is itching, not like an allergy itch, but sudden stings, as though I'm being bitten by bugs.

I feel as though my brain is suffering far more than my body parts. I wake up at odd hours, check my voicemail, fall back asleep, and later can't remember if the voicemail was real. I drive to the store (it being questionable whether I should be behind the wheel) and I try to turn on my left turn signal, but instead I flash my brights. I try to reach for my exfoliator in the shower, and while I'm very actively telling myself to grab the orange bottle, I grab the blue bottle of body wash instead.

A lot of the above have to do with the fact that, almost three weeks into treatment, the minocycline has not only crossed the blood-brain barrier, but is actively killing Lyme spirochetes in my brain. This is making my brain more inflamed than it already was. But...... there's something else! A few days ago, I had a few major back adjustments performed by a chiropractor, all of which signal the central nervous system to balance itself out. Since my nervous system is so out of balance, trying to balance it out can cause a bunch of neurological symptoms, hence the last three days of feeling like I'm drunk and suffer from Alzheimer's wrapped into a burrito and tied with a bow ;-)

I recently remembered a funny, trippy story from my childhood. It must have been only a year or two after I got the now-infamous tick bites. It was late, past my bedtime, and I still wasn't asleep. Then I started seeing squiggly bugs crawling on my bed. I moved my eyes to the wall, and I saw them there too. Panicked, I moved my eyes elsewhere, but wherever I looked, long, squiggly bugs were crawling around. So I went and got my mother, and I started pointing them out to her. Only, she couldn't see them. She told me there were no bugs, but I very, very clearly saw them wiggling about, and I still remember how real they looked. But apparently I was the only one who could see the bugs. So my mom gave me some aspirin, and I finally fell asleep. This is exactly what they looked like:

Unlike a number of other "bug" shapes, they weren't round at the ends, or short, or curled, or flat, or circular, or flying... they looked exactly like the ones above, only they were black. Well, the photo above shows the borrelia burgdorferi spirochete. A.k.a. Lyme disease. I saw the Lyme disease that night. But I never saw it again. Could that have been the night the Lyme disseminated into my brain? Was my hallucination a rite of passage into the next stage of chronic Lyme?

Once I get through this treatment, I'll be able to go back to work, resume my social life, and be a healthy person, right? Not necessarily. The more I talk to people with chronic Lyme, the more I hear of their failed attempts to treat it, their many years of undergoing various and pricey treatments with little success, and their relapses even after they thought they were cured at one time. I talk directly with others who have Lyme, and I read literature about Lyme's ability to hide in tissues or myelin sheath, wherever the medication won't reach it, so that it can multiply again after you stop taking the medication. I realize just how hard it is to cure, and I wonder why I would be anymore lucky than the other folks who've been trying to treat it for years.

But I take my pills. And I let them make me crazy. And I rest. And I wash up. And I eat. And I rest. I take it one day at a time. And I try to be patient.

I try not to think that my savings is dwindling away every moment because I'm not bringing in any income. I try not to think that I finally, at 29, after years of career changes, had become a self-made career woman with in-demand skills, only to have to stop working.

Instead, I think about my dreams. My band putting on shows. Mad love. Starting a family. A house on five acres of land.

It's hard to wait, because I've always been proactive, taking the bull by the horns and making my dreams into reality rather than waiting for them to happen to me. Now it's time for me to surrender to the unknown. Everyone keeps telling me that whatever is meant to be will be.

Well, I've never been one for surrendering my fate, or for ascribing to the notion of predestination, that my life is laid out according to a plan by a higher power. In fact, in freshman year philosophy 101, I lashed out against that notion, proclaiming, "We have free will and we make our own destinies." But when you have the time to lay around, stewing in your sweaty sheets and doing a whole lot of nothing, you think about these things. I'm more willing to admit now than ever before that I haven't got a clue how anything works in the cosmos, and I don't have the power to control my life as much as I wish I did. So, I wait.


  1. Hi leila,

    ***Very smart post. I would like to answer to some of your statements, for what it is worth:

    I saw the Lyme disease that night.

    *** Have you seen the episode of Dr. House in which they diagnosed an infection in a girl, having been passed to her from the father of her boyfriend? Well, in this episode, they diagnose the infection by reading the waves of the brain showing the image of the father... This is not science fiction (maybe a just little!...), it is an old technique... So i think it is very possible that you saw this infection.

    Once I get through this treatment, I'll be able to go back to work, resume my social life, and be a healthy person, right? Not necessarily

    *** This is true. but you have other tools now that people usually did not have before. We know the important of raising GSH in order to prevent the borrelia to be transformed into the most complicated to eradicate form by ABX. Also we know that possible the XMRV may be the monkey wrench in our diseases, including Lyme disease, i.e., it may perfectly well be the master poppet infection, needed to be gotten rid off first, in order for the rest of the infections to be addressed satisfactorily (Note that the WPI found XMRV in 100% of CFS-Lyme patients. And we now are starting to know premising therapies for XMRV! (like gcMAF), and others yet to come...)

    read literature about Lyme's ability to hide in tissues or myelin sheath, wherever the medication won't reach it,

    *** Hence the importance of restoring your GSH levels by restoring the methylation capacity.

    taking the bull by the horns and making my dreams into reality rather than waiting for them to happen to me

    *** This is very spanish! ;-) Yes, probably this is the difference between some of the people who get cured and some of the people who don't.

    So, I wait.

    *** Yes, I hear you! hang in there!, te deseo mucha suerte!

  2. I just saw an old episode of house in which a girl was bitten by a tick and got sick right away and it reminded me of you. They didn't mention lyme though. She started breaking out in a rash and couldn't breathe. I won't go into all the tests they ran on her. She had MAJOR bad symptoms and everything started to shut down. Her background before she got bitten...she had to stay in a safe, clean room b/c she had a VERY compromised immune system, several allergies, sometimes she started having trouble breathing and needed to keep an epi pen with her at all times, but the kicker...she had a heart transplant. Sometimes she'd get rashes if people touched her so they had to go in with gloves and a gown and such if they saw her system. I know the show is exaggerated but it made me think of you and how different it was...her reaction vs your reaction. I know the heart transplant made it so that she had VERY extenuating circumstances, and maybe her immune system was much more compromised than yours, which is why it happened so fast. AND it's a TV show...I don't know where they get their ideas and how well researched they are.

  3. p.s. I doubt you would get that severe, esp since you've never had a heart transplant.