Symptom updates, new theories, and doctors; oh, doctors.

The headache got even more severe the next day, on my peak mid-week-flare day. It was just barely responding to meds. Not using my eyes helped it ease, and when I awoke Thursday, it was completely gone.

When I got that rash in July, it appeared then started to fade out, and another cluster appeared. But so far, I haven’t had any more “papular eruptions” yet (as the Burrascano guidelines refer to these bartonella-related things). Every time I mention these rashes, people tell me I should get checked for Rocky Mountain Spotted Fever, but I don’t see what the point. It seems obvious and I will always wonder if I’ve some kind of rickketsial infection, whether that be RMSF or Ehrlichiosis or flea-borne spotted fever, or any number of things. I did have antibodies to somethign like that. The treatment for all of them is one of the tetracyclines along with Rifampin. If I still have these rashes despite adequate bartonella treatment, we’ll know it must be one of those. But as it is now I cannot handle Rifampin with Doxy, or Mino, or Tetracycline without risking hospitalization, even if I have come really far. One thing at a time, as they say! So any RMSF testing will have to wait.

But someone did direct me to a photogallery of bartonella rashes, via this doctor’s site, a man who studies them and writes about them. He was actually in the Lyme disease documentary, Under Our Skin. One of the pictures really struck a cord–it was exactly the same as the strange scratchmark-like rash I got on my knee several weeks ago, that I mentioned last post… So seeing that, I think I have enough random information to compile a new theory!

I THINK: The bartonella quintana strain appears to be smashed, evidenced by my non-existant five-day-flare cycle and all of its previously accompanying symptoms, particularly the “temporary insanity” (i.e., violent moodswings). But when that ended, this other seven-day thing began. And my rashes started coming back. And old symptoms popped up. And I almost went to the ER again. I’m not sure when, but I know I wrote of it in my blog somewhere, exactly when that new seven-day-flare cycle began. I’ve repeatedly hypothesized that this is the bartonella henselae strain coming out, but now I think I may actually be right.

  1. I finally got the scratch-mark like rash on my leg that everyone else gets,
  2. it has a seven-ish day flare cycle like I have,
  3. the dots on my feet are bartonella, according to numerous sources, including my doctor, and
  4. the symptoms are still bartonella-like, just at a different interval and with different dominant symptoms.

So either that has happened, or something that acts like all these things but isn’t bartonella (a “BLO,” or “bartonella-like organism,” as so many physicians refer to it?), is attacking me right now, and that’s the thing we’re trying to finish killing within the next three months.

Further research via moi has confirmed that bartonella really does cause the type of general, terrible joint pain I was getting. The good news is: It’s gone! I’m no longer aching or feeling like my bones are going to snap. I guess the Bactrim brought it out of my joints, and for that, I’m thankful. My knees still intermittently give me issues, but I still think that’s the Lyme disease.

I’ve been very fatigued lately. I’m unsure why. I get short of breath too easily, and get a headache when I stand up (not adequate blood/oxygen/pressure in my brain?). But I’ve stopped coughing all the time, finally. I’ve not had fevers, but last Thursday my temperature was 99.something in the morning, at my doctor’s visit. I’m randomly nauseated, multiple times a day lately, and from Tuesday-Thursday my left eye twitched all the time. According to my blog, I posted on the 10th of October that they had been twitching frequently also… I don’t remember that, but that’s why I keep this blog! Ha! I hope it’s a herx from the Bactrim and not a bug trying to show. They haven’t twitched since April-ish.

The only bits of troubling news is, one, my neurologist is leaving. Yes, the one I loved so much, that took me a decade to find, someone who actually would deal with my complicated case and take me seriously? Sigh. I scheduled one last appointment with him next month before he leaves. After that I’ll be seeing his colleague, who I hope is just as amazing as him.

And my cardiologist wouldn’t give me the results of my echocardiogram over the phone. You know what that usually means… I’m prepared for him to tell me my valve regurgitation is worse (wouldn’t surprise me) or maybe something to do with heart failue (also wouldn’t surprise me). If it’s anything else, I have no idea, but I’ll cross that bridge when I come to it, as the saying goes. :) I see him on Tuesday. This might be strange to say, or even stranger to read, but even if something is wrong, I still think I’m incredibly lucky. I’m alive, and given my particular circumstances and illness combination (and the fact that trees really, really love me), I think it’s a miracle that I am here every day, no matter what.

a rainbow at night

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5 thoughts on “Symptom updates, new theories, and doctors; oh, doctors.

  1. @_@ Trees love you too much, that’s what I think! I think they should stick with their own species. *hugs you* I am so sorry to hear about your heart….I hope that the news isn’t as bad as you fear, and I always admire how upbeat and positive you are about everything that’s been happening to you. I’ll be praying for you for tuesday….that everything goes okay. Good luck with your Bart-like organism, and trying to kill it off. It’s so hard with these things because you just can’t know all the many organisms floating around wreaking havoc in you sometimes! ;____; I hope you beat it very soon! Many hearts to you <3

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    1. *hugs back* For the two most likely possibilities, it’s more or less just a matter of time, i.e., not something new to me. But if it’s anything else then… I don’t like surprises, haha! It might be something minor, after which I can yell at him for calling me in to discuss such a thing?

      And thank you! I hope bartonella-organism dies, and dies hard. I’m feeling really terrible and flu-like, so I’m thinking something must be dying, and that’s all I can hope for: that whatever treatment I’m on is DOING SOMETHING and we’re not wasting time treating the wrong infection. And in hindsight I probably feel worse after this Lyme flare because for the first time in nine months, I wasn’t on ANYTHING to kill it! Haha. Oops!

      <333

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  2. Thanks for pointing out the “scratch-mark like rashes”. I have those, for at least 15 years, probably longer. My ex-girlfirend used to call them “pregnancy stretch marks” :-).

    I have gradual onset ME/CFS, I could ignore the symptoms until last year – and never made a connection between the these “scratch marks” and ME/CFS since. Huh.

    But. These striae are much more common than ME/CFS and much more likely connection is nutrition (for most people at least), from my point of view.

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    1. Hello :) But that’s a bit disconcerting… Are you aware that the rashes related to bartonella usually look like stretchmarks? They usually appear on the torso, but can happen on the upper legs and upper arms as well. I’d google it if I were you, and compare.

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