Dr. S, this is what’s happening…

I’ll tell you about it more in depth when I see you on Tuesday, but basically what happened is the moxaflaxin arrived, and when I looked at it, I realized that’s a different name for ‘Avelox’, an antibiotic I took years ago.

(Back in 2007? 2008?)

But something bad happened with Avelox–worse than Levaquin–and at first I couldn’t remember what it was, so I just stared at the bags of Avelox for a few days until I remembered–it caused really weird things in my heart rthym, and it started just after two doses–I remember now was spooked out of my mind–

(Whereas Levaquin, I had really weird bad dreams, but in the scheme of things not so scary. I never felt Levaquin could kill me, just that it was weird. Avelox I felt was a ‘no-go-ever’ drug.)

So I’m going to go back to Dr. P and talk with about all of this, but in the meantime I’ve put together a cocktail of Meropenam and Cipro, because Cipro is in the same family as Avelox but I’ve never had any problems with Cipro.

Cipro is a weird drug to take for this, because some people say it doesn’t work at all, but others say it has some activity, like Levaquin and Avelox, so it’s considered ‘inconclusive’ right now.

Given the badness of my symptoms (is ‘badness’ a word? 🤔), I need a strong cocktail so it’s worth giving it a go, especially since I think Cipro would cover potential secondary bacteria I’ve got growing in there causing me problems.

What’s happened leading up to this–why I’m feeling so close to death–is that I’ve started to develop strange muscle spasms in my jaw…it kind of reminds me of the spasms I used to get when I still had my gallbladder, like my body is trying to reject something…not so much painful as weird. I’ve also developed some random bad shooting pain, but that’s different.

(The throbbing pain in my jaw is always there, but the spasms don’t add pain so much as it’s weird.)

Since I’ve put together this cocktail, i haven’t had these spasms as much–and frankly I’m hoping my overwhelming feeling like total shit is a sign that the cocktail is actually working–but we won’t know for a few weeks if it’s working or not because it’s a slow growing bacteria (dr P explained to me).

I’ll know of course if I’m getting worse over the next few weeks, but at this point with these spasms and periodic bad shooting pain (like it’s coming from a tooth), if I get any ‘worse’, I’m thinking it’s going to be a full on seizure, or septic, or something like that. The kinda worse that puts me in the hospital…and I may not come out of it 🤢.

Anyhow…so I’m on total lockdown mode now, I’m literally setting alarms and not missing a dose of anything. I don’t like to take different antibiotics at the same time, so with the flagyl for cdiff protection and everything else, it means I’m pretty much taking something every other hour. I’m also trying to drink a full cup of herbal tea too, to help stay hydrated to support my liver and kidneys.

(I bought some milk thistle tea to support my liver, as preventive…if I’m going to sustain this cocktail for any length of time, I know I’ve got to be on my A game with everything else 🙂

I am going out to walk sometimes, I believe exercise is important, but I don’t go far from home to stay focused on my medication schedule.

The good news is, I do believe if I’m super super diligent–don’t miss any doses, protect my liver and kidneys–I think I can weather this storm, but in the life of T.L.K this is a fucking category 5 hurricane and it’s not going to be easy. Lyme Disease was a category 4, if only because my body was younger and hadn’t been abused by medications for years (and everything that’s happened in between has been like super bad tornados that pop up…momentary headaches that have to be dealt with then pass…)

(Though Spring of 2011 maybe a Category 3 hurricane?)


All I can do is take it one moment at a time, one day at a time. My blood pressure machine broke a few months ago, I finally ordered a new one it’s coming. It will help me keep track of, if my feeling worse is a sign the medications are working, or if I’m feeling worse means getting worse…

I remember from the Lyme Disease days sometimes when antibiotics are working you’ll feel a lot worse before you get better…I’m hoping that’s what I’m going through now…)

Thanks for everything. I never would have made it through any of these storms without you.

Tara 🙏

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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