Tuesday, February 1, 2011

Attack on the BRAIN!!

It sounds like science fiction.

If borrelia burgdorferi spirochetes stay in the body long enough without treatment, they disseminate throughout organs and bodily systems. With time, the spirochetes cross the blood-brain barrier, at which point they make like Geronimo into spinal fluid and stake their claim on the central nervous system. This is called neuroborreliosis.

Neuroborreliosis' main symptoms are psychiatric, such as mania, mood swings, depression, delusions, paranoia, "brain fog", irritability, rage, panic attacks, "motor mouth", and generalized anxiety. The brain literally becomes infected and swollen, and stays in this state until the patient is treated. Various brain scans and MRIs show abnormal brain activity, white patches, inflamed tissue, and other signs of diseased flesh in the very areas that predict mood. Not a pretty picture. But I'm one of the affected.

People who know me would tell you I'm weird... I'm kind of off......... I'm friendly, extroverted, chatty, caring and sensitive, and above all, I mean well. But I talk too much about myself, I say inappropriate things without thinking first, my eye contact is inconsistent and awkward, and I'm unpredictably either excitably upbeat or down in the dumps.

The question begs, is this just my personality? Or is it the Lyme?

I remember my anxiety starting in elementary school. As you may have read in my blog entry entitled "Timeline of Symptoms (Historical)", my anxiety/panic disorder started around age 9--two and a half years after I contracted Lyme (which is about the normal full-dissemination period)--and then calmed down for awhile, only to come back much stronger in high school.

There was a point at which I couldn't leave home without having a full-blown panic attack. I couldn't ride a bus or elevator, enter a mall or movie theater, or attend class much of the time. Rationally, I know there was no threat, but logic has no place in an infected, diseased brain. I tried talking myself out of it, seeking therapy, doing yoga, meditating, smoking weed. I can say with certainty that SSRIs/SNRIs have been my saving grace, and without them, I wouldn't be functional. And yes, I truly, truly believe that Lyme is the culprit.

Lexapro and Cymbalta have enabled me to function, to live a relatively normal life. And while I seem on the outside to be--as I mentioned above--strange, loopy or self-absorbed, what you might see doesn't begin to explain what I feel. Nobody can see or feel what's going on inside me all the time.

In spite of my dependence on my SSRI/SNRI, which really just gives me the confidence boost to go out without having panic attacks, I'm an anxiety roller coster. A complete and utter mess on the inside. A constant freak-out. When I'm sad, I'm anxious. When I'm happy, I'm anxious. When I don't give a f---, I'm anxious. When I'm asleep, I have chronic, psychotic, violent nightmares.

But do you know what I mean when I use the word "anxiety"? You have your definition of the word, and it probably isn't the same as mine. So allow me to try my best to use what's essentially a limited vocabulary of these things we call words, to try to articulate this...... ahem.....It may help to start by explaining what my anxiety is NOT. It's not constant worry. And it's not brought on by stressful situations. I suppose the best way to describe what it is, is: urgency and eagerness.

Even those words don't fully justify the beast itself, but they're a start. It's like.......... it's like, wherever I'm driving, I have to get there right away, even if I'm not running late. It's like, whenever someone is talking, my mind wants to jump ahead three paragraphs. It's like I always need to be doing something, and when I'm not, I pick my skin or chew on my lips.

More than enough people have told me I need to chill out. But if my brain and spinal cord are indeed infected and inflamed, I don't know if I'm capable of it. Of course, the ultimate goal is to cure/kill the Lyme, which is nothing if not a major challenge once it reaches the fully disseminated, neurological state. If--and only if--I'm able to beat this disease, I have hopes of finally CHILLING OUT.

The biggest challenge for someone who suffers from both chronic anxiety and chronic fatigue is suppressing the anxiety without suppressing the energy (thus causing more fatigue). Psychiatric drugs aim to suppress the anxiety receptors, but often misfire and leave you with anxiety and a groggy, exhausted body (or no erections or orgasms). My psychiatrist and I have spent numerous sessions discussing this anxiety vs. fatigue conundrum and toying with various anxiety medications that left me in a perpetually sleepy state.

Is it too much to ask to have just enough energy--just not nervous energy?

Of course, this chronic and unwelcome state of anxiety could partly cause the fatigue. Being on alert forces your adrenals to pump out extra adrenaline and cortisol. Imagine this as a constant state. Now imagine the toll it takes on the adrenal glands.

I don't have all the answers, nor do I know what my future holds. But I'm glad neuroborreliosis is finally getting some much-needed attention in the medical community. It's time we recognize that a spirochete--a living organism--is what's making some of us crazy, weird and moody. Contrary to mainstream opinion, we're not doing this to ourselves, and it's not within our control. It's just nice to see Lyme starting to get some credit--after all, there was once a time [true fact!] when dying AIDS patients were told they were "psychosomatic". Yes. They were.


  1. It's amazing (not in a good way) how powerful these little jerks are

  2. It all sounds so familiar... I think it might be so much more confusing for you as you've been sick so long. It's hard to distinguish what's you and what's not. Of course this is something that those of us who are sick a few years can associate with. UNfortunately all the lines get crossed over and blurred...

    It never seizes to amaze me how my family and loved ones who knew me before I got sick can't tell when I'm not myself and judge me for it... People have very short memories.

    Also another conundrum is say when the Lyme inflammation is causing us to be a bit on edge and moody, we have to take responsibility for what happens as it comes out of our mouths, but it's not really us. It's very stressful sometimes.

  3. "they make like Geronimo into spinal fluid" huh?