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8 month Lyme treatment update

Posted Dec 07 2012 12:58am
(See bottom for a brief summary, this is a bit long). I've been a bit MIA lately. A few days after I wrote my gung-ho post on taking control of my life and starting a graded "exercise" program, I somehow managed to re-aggravate my whiplash from my car accident in February (I'm guessing from the move?) and boy did it come back with a vengeance. For almost a month, I was unable to sit without pain all over my back; it's like every muscle became hyper-sensitized and any aberrant movement would send it into spasms. Anyway, nothing was helping so I found an acupuncturist and slowly I've been getting better and can sit up again without too much pain and most importantly, without making it worse which was an issue before.

So, I've spent the last 4+ weeks just lying around and going crazy with cabin fever, and feeling pretty depressed. I had no sense of how I was doing CFS/Lyme disease/what-have-you-wise since I wasn't ever "testing" myself. Until this last Saturday! And that's where the Lyme update comes in...

I went to my boyfriend's work holiday party! I'm so proud of myself, we took the subway into San Francisco, took a taxi to the club, had our photo taken inside, good stuff. I sat the whole time awkwardly while everyone else shmoozed standing at the bar, but I don't care! It was a thrill to just even make it to the subway! Would have been happy to go home right then and there. I walked 1.5 miles (info thanks to my trusty pedometer ) over the course of the whole day (getting ready at home til we got back at 1am). Three months ago, I was definitely only able to walk at most .8 miles. I feel like 1.5 miles seems so meager compared to what normal people do, especially if you consider it was spread out over the whole day, but it's a huge victory for me. The best part is that even though I was fatigued the next day and had some of the muscle-burning action going on, I didn't have any huge crash or anything. I've spent the rest of the week mostly resting, but I've also managed to run a few errands!

So, despite my month+ of doing absolutely nothing and being unable to even wash a single dish, I appear to have made progress! I'm very hopeful.

In case anyone's curious, my doctor also put me on a third antibiotic (Tinidazole), so I'm up to 4 types of meds daily. Tinidazole is supposed to be a Lyme-cyst buster. Lyme bacteria turns into cysts when it's environment is threatened, and then goes back to bacteria form some time after the threat disappears. This is why some people get "cured" from chronic Lyme, but then get sick again later. Darn cysts!

So in summary
  • Messed up my back, no resistance-based exercises for me for some time :(
  • I've been taking a new medication called Tinidazole for Lyme as of 2 months ago.
  • Other meds I take daily for Lyme Disease are Doxycycline, Amantadine, and Ciprofloxacin
  • I was able to attend take public transportation and attend a holiday party.
  • I walked 1.5 miles over the whole day without a huge crash after, but still experienced symptoms (compare this to three months ago where I could only walk .8 miles with similar symptoms)
  • Hurray!! :)
  • Also, I don't really talk about my interstitial cystitis (painful inflammation of the bladder) much, but it's still a big problem, definitely effects having a normal relationship :( Found this article written by a doctor who suspects a relationship between Lyme disease and interstitial cystitis . Hmmm...

Hope everyone's doing as well as could be, emotionally at least if not physically!

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