Now that I’ve gotten past the denial stage, I am taking action. I figured it’s worth documenting. I spent significant time thinking about my options. I don’t want to become an antibiotic junkie, nor do I want to give up on having a life again. I need to balance short term (getting out of this) against long term (finding a more permanent way to manage things). In the end I am leaning toward the following plan: start this (and future relapses) by trying something new, but then switch to antibiotics if it doesn’t seem to be working.First, briefly, my symptoms:
- NEW: stiffness and pain in the joints of my right thumb, stiffness in other joints in my right hand
- Some cognitive fuzziness (more difficulty reading than writing, memory stuff)
- Some headaches (though not as bad in the past, and mostly wierd painless back of the head tension and floating and tingling sensations or stiff neck, etc)
- Frequent sense of imbalance or dizziness, often prompted by rising but not entirely
- Some shortness of breath at wierd times (e.g. going up stairs fine one day, not the next)
- Occasional weakness (holding up head, walking, etc.)
- Frequent napping, 15 mins to 2 hours, despite getting 7-8 hrs every night
- Ringing in ears (the one thing that never went away)
Overall, I am functioning pretty well but have definitely taken a step back from where I was for the last 6+ months. I am more worried about trend than getting from day to day. And this has been building (and increasing in severity) long enough that I feel a need to take action.
So I started with a combination of online research and a visit to my LLMD. I wanted to check that he wasn’t urgently worried about letting this slide for a bit, and since he’s far away (and I happened to be in his town), this also makes it easier to call in a month or two and ask for drugs if things continue to deteriorate. His reaction was disconcerting, but fit my needs. He was definitely not overly worried, and if anything brushed my concerns away as caused by stress (something I believe is a factor, but not the cause of my current situation). He was also concerned that antibiotics could bring things up that would overall cause me to feel worse. So I have his blessing to wait on stronger treatment.
Meanwhile, remembering that nothing I had found online before was as compelling as antibiotics, I started looking for something new. It almost fell in my lap — I was reading the Lyme Disease Research Database blog and happened upon a post about Teasel. Intrigued, I did some more searching. The original post mentions herbalist Matthew Wood (M.S. in herbalism) and his book, The Book of Herbal Wisdom: Using Plants as Medicines. The entire chapter on lyme disease and teasel is available at Google Books. I also ordered the book after reading the introduction and Teasel chapter. Further google searching turned up testimonials (such as this one) support group posts, and so on, all indicating that if it is a good fit, Teasel can be very effective. Recalling my metrics for evaluating a treatment, there seems to be some process data (from Wood’s book), decent experience data, no major safety issues (though if effective, it may raise symptoms as it heals), and no major practical barriers to treatment. Additionally, it feels right. So I went ahead and ordered Teasel tincture, and based on what I had read at the links above, St. John’s Wort (tincture and oil) to go with it. Based on this and my past experiences, my current treatment plan is:
- Teasel (working my way up slowly to 9 drops of tincture a day, away from other meds or meals)
- St. John’s wort (applying the oil to the back of my neck when it bothers me, considering a regular dose of the tincture as well but it’s hard to do that and avoid the teasel timing wise)
- Ledum 30c (the homeopathic remedy for lyme arthritis)
- Detox agents (zeolite and herbs, to help my body work through whatever’s going on)
- Gut stuff (because I’ve had a lot of gas. Probiotics and bowel rebuilders just in case that’s a factor)
- Vitamins (because I had happily stopped eating anything but healthy food for a few months there. I hate popping pills all the time!)
- Yoga (aiming for 5x a week @home again, taking a class again)
- Sauna (I now have an IR + stones one! Use it whenever I have time, good way to end the day)
- Sleep (going to bed earlier if at all possible)
- Time management (I had started to LIVE again when healthy and am healthily overcommitted. I have to be very careful not to get behind or things like (9) will get hard).
- No wallowing (or 10 would be impossible)
- Lots of anger (this sucks! and I want my life back! See it feels good to even say it :)
- Healthy doses of talking with friends (to work through 12 and avoid 11).
It’s at least a concrete plan. We’ll see what comes of it. Wish me luck!