As you’ll recall, I’ve been in a bit of a plateau since the end of month 12 (May, 2016)- a high pain plateau at that. Blech. I reported last month a long list of things I was going to try in month 15. I had been convinced that something would crack the nut. The list of treatment changes included:
- Taking Cholestyramine as a toxin binder every night
- Taking Methylation Assist Liquescence then Methylated Folate to open detox pathways <– didn’t tolerate this at all
- Drinking more electrolytes to improve hydration
- Using L-lysine supplements to fight viruses
- Taking a multi-mineral w/ zinc to help correct any imbalances
Unfortunately, none of them seemed to help at all. I’ve gotten worse still in month 15 with my symptom list of two expanding quite a bit. In fact…
Month 15 Symptom List
- MAJOR muscle issues including spasm, knots and pain
- Ringing in ears
- Rather severe but episodic tremors in my arms and legs (especially right hand)
- A couple days of irrefutable exhaustion
- Light headedness upon standing
- A few days of aching pain behind my eyes
- Occasional plugged ears / mild head pressure (worse on right)
- Early waking and bad dreams
- A few days of bartonella foot pain (which had been gone a year)
While the list is quite a bit longer, I’ll emphasize that most of this feels pretty mild… except the back and hip area muscle pain which I find very debilitating. And admittedly, the tremors are pretty scary looking. But the rest was noticeable but not problematic.
My regular Lyme doc tells me this is all just a bartonella flare – perhaps my summertime meds that let me play in the sun just weren’t as strong as those I’m on in the fall and winter. As such, it’s time to go back on the big guns. Changes for month 16 will include:
- Going back to Doxycycline (byyyye sunshine!)
- Adding Zithromax
- (Staying on Bactrim)
- Pulsing antibiotics 4 days on, 3 off to maintain long-term efficacy
- Treating with Houttuynia and Stevia herbs, which are apparently quite powerful
Now, this list of changes is all well and good, but this notion that I’m worse off because my summer meds weren’t as strong doesn’t sit super well with me. You see, that muscle pain and terrible spasming started in May, when I was still on my “big guns” medications. So I can’t help but shake the feeling that something ELSE is going on here. To make sure my bases are covered, I’m seeking a second opinion from a Kinglhardt trained doctor this month and hope to have some additional info to share really soon.
Now, I think perspective is everything in a long-term battle like Lyme disease. And while I am not doing as well as I’d like right now, I am still doing a LOT better than I have been in the past. This month I was able to:
- Work full time and then some (including a re-org to a new boss and team, stressful!!)
- Buy a house
- Buy a car
- Buy some major appliances (more stressful than I’d have thought)
- Take a weeklong work trip to Chicago
- Take an adventure vacation to Banff National Park that included multiple days of strenuous hiking
Those last 3 things happened in the span of 2.5 weeks even. Oh, and I survived a breakup (with Lyme yet again listed as a major factor, even from a guy who’d claimed to be so fine with it… I’m trying hard not to develop a complex here.) ANYWAY. This month was a lot. And a year ago, that probably would’ve destroyed me. But here I am on the other side of that mountain of STUFF feeling just fine. In fact, the weeks that I was moving and hiking were the weeks I felt the best. This level 7 or 8 pain I’m in at a desk basically goes away when I’m on the move. Now if only I could find a job hiking that paid me what I make in the office, huh?
It is worth noting that almost all those new symptoms listed above came on before this crazy busy period, so while I’m sure some more rest and less stress would’ve been beneficial, I can’t really blame it for the relapse I’m having. I think it’s simply a continuation of whatever began in May.
I have hope that month 16 will bring more healing. Between the heavier meds and the additional insight I’m bound to get from that second opinion, I know something will bring me more relief.
And even if it doesn’t, you know what? I’m ok. I’m still living my very best life, I’m still my best self and I have gratitude every day for what I’m able to do in this somewhat broken body of mine. And this is the beauty of perspective, isn’t it??
Wishing everyone happy healing.