The last week has been eye-opening, to say the least.
After three fantastic days of gamma globulin-shot-induced bliss ("I felt like I was on top of the world!"), I crashed. Hard. And the last few days have provided the worst of Neuro-Lyme symptoms--when the brain swells, inflames and pinches neurotransmitters.
I wasn't sure the gamma globulin and ensuing crash were related. But I became curious to learn if, and how, a surge of fertilizer to the depleted soil that is my natural killer blood cells could soon thereafter render my brain more Lyme-toxic. Then a pal explained it to me: By dramatically boosting my killer cells, my immune system suddenly started fighting all my infections at once, causing massive die-off which resulted in a herx.
Twenty-three+ years of chronic, untreated Lyme has depleted my body to dangerously unsafe pseudo-levels of magnesium, iodine, Vitamin D, ferretin (iron), thyroid and adrenal hormones--for all of which I'm taking supplements that make me feel craptastic--and also contributed to chronic viral and bacterial infections such as chronic pneumonia and Epstein Barr, virtually destroying my intra-cellular levels of white blood cells. Leaving my immune system in the dust. A mere mirage of itself.
But now I'm also experiencing this mental low that hits unexpectedly from time to time, a result of the Neuro-Lyme that I've customarily chocked up to my "generalized anxiety disorder" but encompasses so more than just anxiety. Sometimes--maybe two dozen days per year and increasing in frequency now that I'm treating my Lyme--I feel so awkward and closed off from the world that I render myself a combination of anxious, reclusive, and--for lack of a more politically correct term--retarded.
Then my Lyme mentor, another "Lymie" whose life story eerily resembles mine, taught me about mild Lyme-induced autism. He suffers from this condition himself, which he learned about from his doctor, Dr. Klinghardt in Kirkland, WA. This fellow Lymie has become a dear friend to me since my diagnosis in January, in addition to having taught me a wealth of information on Lyme disease, which he knows enough about to write a book or earn a badge or metal or give a speech to the damned IDSA.
If I'm Lewis, he's my Clark. And Clark got the dusty, cracked wheels in my head spinning.
Naturally uber-inquisitive, I wanted to know everything about this condition. I described to Clark my symptoms that periodically flare up, inquiring how they compare to his mild Lyme-induced autism. As it turns out, my experience is almost identical to his. During these moments or days, we become withdrawn from other people out of necessity because we become socially handicapped, which is ironic because Clark and I are both normally extroverted conversationalists on our good days.
But on our bad days, we feel highly awkward around others. We have a hard time articulating, communicating or bonding with others, not to mention we avoid eye contact and feel fidgety. Our emotional ability to sympathize or empathize with others is cut off, and we feel cold to others, which again is ironic because when we're well we're very empathetic and sensitive. But on our bad days, we can't bear to interact with others, because it makes us awkward, exposed, vulnerable, isolated, closed-minded and inarticulate, all of which fit the criteria for Asperger Syndrome, a type of adult Autism.
As I mentioned, these bouts are infrequent but increasing while I treat, or herx. The symptoms are milder than those of people with full-fledged Autism or Asperger's. But many people with chronic Lyme have mild autistic tendencies.
This all makes so much sense. I've had these recurring bouts for more than ten years. In fact, this resonates so well with what I experience that I'm suddenly remembering a number of eccentric situations and stories that point straight to this syndrome.
It's the reason I live alone and have lived without roommates since I was 20. I absolutely have to be away from people on the days when I withdraw. On good days, I enjoy the company of others, and on so-so/in between days I prefer to be alone and productive. So living alone is the most conducive to my condition, overall.
It's the reason I vary so dramatically between smiling and joking with cashiers on good days to being unable to speak a word or even look directly at cashiers on bad days, instead rushing through the check-out in a frenzy to get away.
It's the reason why I would push boyfriends away, suddenly and randomly feeling no love or desire for them whatsoever for a few days, only to return to my love-sick self when the mild autism wore off.
It's the reason why I can get nervous around people and insecurely dwell on where to look or what to do with my hands.
And more. But you get the idea.
Now that I know this, I'm kind of embarrassed to associate myself with the word "autistic", but I'm blogging about it anyway. That's because I feel it's significant. Still, many of my friends might dismiss this as hyperbole, or question how well I fit with the description. To those skeptics, allow me to explain in absolute terms that I have whole-heartedly fought to hide these tendencies from others. When I'm going through one of these bouts of mild autism, I try to be an actress. If I weren't "acting", I would probably scream, slam doors, quietly sit in a corner away from the party crowd, or engage in seemingly bipolar, distressed-teenager-type behavior that's simply unacceptable. (Note: bipolar disorder/manic depression has been ruled out by psychiatrists).
But when it's occurring, I'm always keenly aware of it. And I really, really abhor the feeling. It makes me even abhor myself at times, even though it's not really me I have a problem with. And since I don't want others hating me, I hide it as best as I can. Trust me, it's very real.
Indeed I've hidden it for years, but........ now my secret is out.
So, after I made this discovery (in natural Lewis style, no less), I had a million questions for Clark. The main question pointed at how Lyme physically does this to us.
Clark explained, "When the blood vessels in the brain become inflamed, they become really permeable. They don't hold their contents well, causing the tissues to build up fluids, and swelling in the brain occurs. The swelling builds up pressure, blood can't flow in all the places it normally goes, and the emotional centers of the brain get pinched off. Toxins in addition to the ensuing inflammation cause a lot of irritability and brain dysfunction too because the neurotransmitters simply don't work as well."
That explains why the mild autistic tendencies are sometimes mixed in with irritability, brain fog, word loss, and less frequently for me, rage (although I have my enraged moments). All of the above can work intermittently or overlap. Like a bag of trail mix with M&Ms mixed in.
I've said it before and I'll say it again: for me, the Lyme/borrelia have mainly infected my brain, causing mostly what's known as Neuro-Lyme.
A couple of people have pointed out to me that I need to be taking something that more directly targets the repair of my nervous system. The jury is still out on what supplements I'm going to add to my various antibiotics, anti-virals, immune system boosters and other mysterious tonics I force down my throat at record numbers. I'm going to research this myself, and then I'm going to call my Lyme doctor.
The last few days have been absolutely intolerable up in my brain, coming straight off a high from the gamma globulin shot. Not only have I had a bout of mild Lyme-induced autism, I've also been herxing, sweating, overly sleepy, mildly nauseated and overall toxic. I'm just ready, now starting month #3 of treatment, to feel some improvement rather than feel like a complete and utter trainwreck.
To make matters worse (or just more annoying), everyone and their mother has been asking me how long treatment lasts and when I'm expected to feel better. I. Don't. Know. So. Stop. Asking. Please. Thank. You. If anyone finds the answer, I'd be delighted to hear it. In the meantime, I'm going to be looking into supplements specifically tailored to repairing the nervous system, in hopes that they can alleviate some of this absurdity that has become my state of living.
I know I need to just be patient, which I don't feel today.
On the bright side, right now I'm extremely grateful for my little house of my own, and for Clark for his infinite wisdom, information and friendship.