Lyme & Dysautonomia

  Lyme. A four-letter word for a cluster of tick-borne diseases, with the syphilis-like borrelia at the heart of the disorder. It gives you rashes, joint pains, fatigue, and other nasties. If you get treated real early symptoms go away in a few months. But leave it too long and you get more chronic symptoms. Most of the chronic symptoms like joint pain can be managed with meds, or some Vibes CBD oil drops from … most at least.

  One of the more annoying misfeatures of having Lyme is dysautonomia, something difficult to treat with medicines and remedies. It’s got me good this morning.

  Dysautonomia is a disruption of low level body functions. Last night I ate sushi for dinner – same place as the evening before, same dish as before, totally different effect. It’s like that – unpredictable. An hour after I ate I had that sinking feeling as the pressure in my abdomen began to rise. Digestion is an autonomic function and when this is not right the negative effects are far reaching. First came the bloated feeling, then hands, feet, and face going numb, and finally, I pretty much passed out cold on a bench at the train station. A nice young man woke me so I wouldn’t miss my ride home.

  As soon as I was upright the effects pretty much melted away. I don’t have a good explanation, but it’s been like that – demon fatigue if I’m seated or laying down, but if I’m up and moving it’s not much of a problem. I felt the urge to slip away when I sat down on the train – sometimes it’s full-tilt loss of consciousness, but very often the fatigue I experience is purely physical. A few days ago I literally couldn’t make it from the chair where I sit now to the bed, which is two steps away. I ended up on the floor for an hour or two, mostly alert, but unable to force myself to move. It isn’t cardiac or any sort of seizure thing … I just feel like I weigh about a ton.

 I felt OK after the walk home from the train station, a mile or so in light rain and forty-degree temperatures was just what was needed, but I slipped into bed and promptly encountered another aspect of dysautonomic – a failure of thermoregulation.

  I felt fine, perhaps a bit warm. I pulled the covers up … and a chill swept over me. I curled up tight in a ball, covers over my head, trying to get warm again. It seemed to go on forever. This used to be a gigantic nuisance – go outside in the heat and then wilt for hours even after getting back into air-conditioned space. Go outside in the cold and be unable to get warm for an hour or more after getting inside.

  The chills were interrupted by the most disquieting dysautonomia symptom – cardiac ‘awareness’. Many Lyme patients report the sensation of being deeply aware of the position of their heart in their chest, feeling each beat – a distracting sensation accompanied with a sense of pressure. This used to trouble me a great deal but it has been largely gone since I first got on antibiotics back in the summer of 2008. Tonight it came back with a vengeance, not just awareness of my chest but a curious, all over body sensation.

 I was fairly well-conditioned when I got sick. Two months after I fell ill I’d come up out of a sound sleep with my heart rate somewhere in excess of a hundred beats a minute. That’s not right for a guy who’d been hiking above the tree line every night after work for several weeks shortly before that happened.

  I keep a bit of Kava Kava in liquid form and I just filled a gelcap up and took it with quite a bit of water 18 minutes ago. The sense of anxiety is fading as this natural anti-anxiety/soporific takes effect. I’ll post this, maybe nose around on Twitter for a few minutes, and then I should be able to lay down … without feeling like I’m about to crawl right out of my skin.


    • Joy B. on March 15, 2010 at 16:05

    have you been treated? I got a lyme-like tick disease clearing brush from the garden when we moved here about 15 years ago, had no insurance. Finally had to go to the twice-a-week MD in our closest little town with swollen glands and the usual rash, etc. He did a blood test gave me a 10-day prescription for antibiotic, charged me twice what an insured patient must pay, and insisted I had to see him every ten days for the next three months in order to get the antibiotics I needed.

    I looked up the condition in my Merck Manual (just needed a decent diagnosis) and ordered the antibiotics from a pet supply outfit, enough for the entire regimen. Haven’t had residual problems, sometime recurring rash and joint pain, but I’ve long had joint pain. Happens at my age if you’ve used your joints as much as I have.

    FDA discovered a couple of years ago that people were bypassing the doctors to get generic pet meds, closed that loophole. Reminds me of when I used to get hives so bad in my younger days that I’d have to go to the ER unable to see or breathe, and they’d shoot me up with massive amounts of your basic Benadryl. Never would give me a prescription for it so I could prevent getting hives that bad, because they said I’d “abuse it.” Ever since it went over the counter I’ve never again had to go to the ER for out of control hives. Go figure…

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