Symptom recap in the middle of my “Lyme week” (treatment update)

Let’s see. What do I need to update about… Ah, who am I kidding, this is going to be one big ramble!

I’ve been re-tagging my primary blog, the one that used to serve as my health diary until I decided to switch all those things to here and make it public instead of invite-only. That old one is still so useful to me. What’s even more useful are my daily symptom charts… But they are so taxing to fill out, I stopped doing them out after just one week on antibiotics. I used to be able to, but this time around it’s just impossible to keep up.

My intestines are no longer giving me any problem, so whatever was happening has resolved itself. I’m having daily air hunger ever since my Lyme flare started, and in fact, after skimming through my entire prior blog the past two weeks, I’ve realized my air hunger nearly always coincides with my Lyme flares (that may or may not be distinguishable from the mycoplasma pneumonia; I have yet to figure out if that infection has a pattern or not). Nonetheless I am in my typical Lyme week, and having air hunger. I am slighlty comforted by this, because it makes it less likely that this is happening because of babesiosis, something that I don’t think I have but won’t really know until we get rid of these other things. Also, I’ve realized repeatedly that oxygen does not help air hunger. It only makes it slightly less severe, but unlike for normal shortness/gasping of breath, it doesn’t truly relieve it. There must be some neurological component to it, I think, because my vagus nerve is also experiencing problems for the past several days. This happened in responsed to treatment last time as well.

For some reason Lyme disease have an affinity for the facial nerves (most commonly presented as bell’s palsy), I suspect because they are the closest connection to the brain, where the bacteria primarily reside. Except for the vagus nerve, that is, which not only goes from the brain to the face, but all the way to.. your stomach, I believe? It controls things such as heart rate, blood pressure, and gag reflex, and reacts to temperature changes. (Recall the term “vasovagal syncope”?) The last time I was in treatment I became unable to drink anything cold for three months–even water had to be heated to room temperature! And I was consistently nauseated for a very long time, which was only alleviated by an anticholinergic that happened to be used to treat a hyper vagus nerve. So now, something of that sort is happening again, and I’m unable to swallow a lot of my pills. There is a lot of synchrony involved in swallowing, and things just aren’t lining up. Either I just can’t initate the action, or I do manage to swallow but my throat spasms halfway through, or I for SOME reason try to BREATHE in the middle of it, which has forced me to hold my nose so that I don’t sporadically inhale! ‘Tis not been pleasant, to say the least.

My temperature made a spike to 99.6 on Thursday when I began taking my antibiotics at regular intervals (Rifampin 300mg + Doxycycline 100mg, both twice a day), and after that,  it went down to 98.9…where it has stayed ever since. Every now and again it’ll go to 99.2, and then drop back down to 98.9. Then maybe another slight jump, and back down. But it basically hasn’t changed: Before I go to bed it’s 98.9, when I wake up it’s 98.9, when I take it at random intervals, it’s 98.9. I’ve tried two thermometer and even asked my mother to be a control subject (98.2 for her), so it’s definitely something within me. It can’t be my menses because you still experience a normal temperature fluctuation, just with a higher baseline. I.. have no fluctuation, except for small spike after I take my antibiotics! But I’m almost a little glad about this because when your temperature lowers is when the bacteria can most-easily replicate. Maybe now that I’m on Doxycycline, whose (haha I speak as if it’s a person) entire purpose is to stop bacteria from replicating… Yeah.

I found out Rifampin can lower your Vitamin D levels, so I’m glad I take extra Vitamin D every day anyway. :|

…OH. Another thing bothering me more and more is food texture. Right now my diet subsists almost entirely of whole grains, raw fruit and vegetables, eggs, and Ensure drinks. Occasionally I eat chicken.

All things considered I think I’m dealing pretty well being on both antibiotics… Ah, well, of course I have excruitating headaches come nightfall (Lortab-requiring) but that’s a given. Headaches are my most prominent infection symptom and my most prominent herx reaction. I’m not having as much blatant dystonia lately as I am more parkinsonism symptoms. (I qualify so closely for a diagnosis of a “dystonia plus syndrome” I’ve actually considered getting evaluated by a movement disorder specialist to see if I’m showing signs of anything genetic; my dystonia first appeared in my left foot about four or five years ago.) But yes, recently there is more trouble with tremors, difficult initating and stopping movement, freezing movements, slow movements. Again, my facial spasms have died down. I still have the head shaking, but not as severe. I’m currently trying to determine whether it’s my neck or if I’m having nystagmus, which is where your eyes move and your head shakes to compensate. I know my left eye dances and has a mind of its own, especially during Lyme flares… So that may be it. Whatever the origin, it’s not as severe. My feet are beginning to hurt again… Is it time for a bartonella flare soon?

Speaking of which, I’m concerned for the end of this month again. Maybe not this next one, but the one after it, the dreaded “bartonella flare after the Lyme flare” that’s been repeatedly responsible for trying to hospitalize me. I’m only concerned because the chance of it happening becomes more frequent when I have stabbing lung pains (I’ve had pleurisy twice in the past eight months) and air hunger in the week prior… Both of which I’ve had this week. I’ve previously speculated that the mycoplasma might have something to do with it, too, since this happens every other month and mycoplasma replicate very slowly… But we’ll see. I haven’t been coughing yet–… Oh, wait. Yes, I have been, a lot… Ah, crap. :|

Well, hoping this is all just herxing and nothing akin to an ominous sign…! (If I start having random allergies and chest pain, then I’ll begin to worry.)

Oh, but speaking of headaches (which was a couple of paragraphs ago I think), since I’ve needed Lortabs nightly and had no arm numbness, I think that kills the medication-reaction theory about my arms randomly going numb.

My legs have been weak, but again, Lyme, so there’s nothing too unusual there; just need to mention it. I’m having arrhythmias as well but after repeatedly mentioning it during Lyme flares, I think it’s the cause of those, too…

And this concludes my recap of the symptoms I’m currently experiencing. :)

a rainbow at night

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