The New Normal

If you’re keeping score at home, I’m up to eight IM Bicillin injections over the last four weeks.

The herxes seem to be getting milder, especially compared to the morning I couldn’t walk. My reactions since then are more confined to the “regular” type: Increase in muscle and nerve pain, muscle twitching, shoulder spasms, joint pain (especially in the hands and fingers), cognitive/memory decreases, dizziness, decreased depth perception, vision problems, heart arhythmias, increased anxiety, etc. (It’s a very long list.)

There are occasionally strange and new twists, like a new muscle aching or twitching, or a new level of memory loss (especially long term memory — I seem to be losing more bits than I used to). And I got a strange blood blister on my glute a week and a half ago (not related to the injection — could be Bartonella from what I’ve read).

But mostly the Herx reactions have simply been worsening of my current symptoms. For which I’m grateful.

I would give a lot to be able to take a strong narcotic every day, but that is not an option for me at this point. So I stick to the Lidocaine patches for pain in my body core and use my Alpha-stim device for extremity pain and anxiety. My emergency stash of Tylenol 3 kills pain system wide for a little while, which improves my mood, emotions, ability to get around and do things. It even improves my focus a bit.

What I’ve learned from narcotics is that chronic pain is a terrible deteriorator. It eats away at my energy, darkens my worldview, draws a filmy curtain between my truly difficult present and any possible brighter future. The bleak looks bleaker. It seems as if pain has been my constant companion, my only companion at times. I have lost my ability to remember what a pain-free day is like. I can’t imagine a pain-free future at the moment. Like Frodo on the slopes of Mount Doom, I’ve forgotten the taste of strawberries and the feel of grass beneath my feet (sorry – we watched the entire movie trilogy in the days leading up to New Year’s Eve.)

After a while, I’ve noticed that constant pain starts to fade from my consciousness. If it did not, I wouldn’t be able to get up in the morning.

There are times I might say that I am fine, I feel normal. What this fails to communicate is that my new “normal” is a pain level of 6 or 7 (10 being the worst pain I can imagine. My symptoms grow interesting only when they hit an 8 or 9.

Even then, I probably won’t mention a new or painful symptom because I know there’s nothing to be done (other than Lidocaine or Alpha-stim, if I can). And people glaze over hearing about my symptoms. Even I glaze over. It’s boring. It’s simply too much to take in. This amount of suffering is hard to imagine, almost impossible to believe. Even for me, and I live and breathe it.

Now that I know what is causing my symptoms (neuro-Lyme or other tick-borne infection), I rarely panic. There’s no need to call a doctor or visit an ER unless I’m bleeding or have stopped breathing. Or if I have classic heart attack symptoms (different from the heart pounding arrhythmia that can drives me just wild).

So it must simply be borne while I use medicine to try and get well.

Does all this sound like whining? It does to me, and I hate that.

But it is what is real. As I’ve said elsewhere, I’m sick of pretending that I’m “fine.” And by telling the truth, even if it’s only here in my blog, a layer of stress is lifted off me, which makes everything a tad easier to bear.

All part of the new normal.

CDC Positive Western Blot

I came home this past Wednesday from my second trip to San Francisco to see my LLMD (Lyme Literate Medical Doctor). She’s the one who gave me a clinical diagnosis for Lyme Disease four weeks ago.

During this visit I got my blood tests results back and I am VERY positive for Lyme Disease, even based on the ridiculously narrow CDC guidelines (for both past and present infection). You don’t need a positive antibody test to be diagnosed with Lyme (because Lyme is a clinical diagnosis based on symptoms and history, not lab results), but I feel vindicated to have it show up in labs.

I’m surprised by the fact that I’m still making the antibody after being sick for so long – it shows that my immune system is still trying to fend off the bug. I’m surprised because it’s more common for the immune system to just shut down so that no antibody is present (which is one of the reasons there are so many false negative Lyme Disease lab results).

I also tested positive for Bartonella (a common co-infection found in people who have Lyme). My LLMD suspects I have other co-infections as well, including Babiosis and Erlichiosis. In addition, she found two unrelated infections: H. Pylori (the bacteria that is related to ulcers), and shingles!

Next week I’ll start taking a combination of antibiotics and Prilosec to kill off the H. Pylori. Then I’ll continue with the antibiotics, which will hopefully knock out the Bartinella and other co-infections, as well as the Lyme bacteria.

The next confirmation of Lyme infection will be when I respond to the antibiotics, either by feeling better, or by experiencing a Jarisch-Herxheimer (or “Herx”) reaction. A Herx happens when the bacteria dies-off and releases poisons into the body, temporarily making symptoms worse. Oh joy. I may have a reaction either way immediately, or it could be months. I’ll keep you posted.

In the meantime, I have a TER-rible cold, and I’m tracking my Lyme symptoms (there are 47 on my list), and reading, spinning, knitting, and writing when I have the energy.

I’ll try to post an update once per week, in case you want to check up on me. 😉

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