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New protocol - New concerns

Aug 28, 2008 - 0 comments



















pericardial effusion


sleep study



Now that I'm off the IV Rocephin and the picc is out, the doc wants to start me on a protocol from hell.  If it kills the bugs, great.  As long as it doesn't kill me in the process.

I'm starting the new protocol this week. This'll be the sixth one in as many months. Kinda worried about it. Sounds heavy, but I've known others who've done something similar with little, if any, problems.

I've been on zith and plaquenil and they're keeping me on those. Dropping the malarone. Instead, they've got me starting up on mepron for the babs, valtrex for the ebv and hhv-6, and rifampin for the bart. They also want me to get an allergy test to see if I really am allergic to penicillin. If not, then they also want me to start on IM bicillin shots. Ugh and ow. Somewhere in there they said they're also treating me for mycoplasma and c.pneumoniae, but I'm not sure which meds are for those (will be looking that up today).

I'm aware of the reduction in efficacy of malarone when taken with rifampin. Will be taking them several hours apart, since rifampin has a half-life of 3 hours (I think - another thing to check out today).

Not looking forward to swallowing yellow tempra paint (mepron).

Been mulling over everything since the PA and I talked yesterday morning.  I really feel like they're dropping the ball regarding my case.  Once again, I had to get her attention so I could make my points and talk about new symptoms and ongoing concerns.

She didn't know the picc was being pulled, let alone it had been.  She hadn't even glanced at the cardio tests I'd faxed a month ago.  You'd think if she'd know she was going to have a phone consult with me, she'd at least bother going over my file.

Let's not even get into the front office and how they had the night answering message on for more than a 1/2 hour after the office had been opened.  They finally turned on the daytime phones about 10 minutes after I sent them a fax letting them know the problem.  Maybe they didnt' wonder or care why they weren't getting any calls that morning.

She wants me to have another EKG and echocardiogram done, mostly to humor me, but partly because there was a pericardial effusion shown on the last echo and that concerns her.  She's taking the hospital cardio's word that everything else was normal.  I don't.  I'm thinking about seeing a good cardio on my own, if only to hear there's nothing to worry about.  This daily chest pain (plus light headed, short of breath, pressure in my shoulder and throat, etc.) is getting on my nerves.

Oh yeah.  Got my hormonal and ferritin results back.  Looks like I'm really and for truly in perimenopause.  Ferritin's down.  She said it was "normal".  If she'd bothered to look at my file, she'd have seen it was down over 20 points from the last time it was tested.  My ferritin's currently at 24.  That's not normal.  Ok, it's at the very low end of the normal range, but is not high enough to be non-symptomatic.  No wonder I've been losing hair again.  The optimal level for ferritin should be somewhere between 70-90.  You'd think she'd know that.

The more I think about it, the better this doc down here looks.  He's not an ILADS doc, but at this point I'm not caring.  Turns out, he's a holistic doc who treats with both antibiotics and alternative methods.  I'm ok with that, as long as he's good.  Wouldn't hurt to check him out anyway.

In other news, the insomnia is back in full force.  Been waking up anywhere between 3am and 4am, whether I need to or not.  I'm noticing some of the neuo effects from the sleep dep already.  The tremor in my right hand has become more frequent and stronger.  Brain just ain't there.  I'm looking forward to the sleep study.  Will be happening in 2 weeks (Sept 11-12).  Maybe that'll finally give me some answers.

Need to get copies of the EEG, the last echo they did while I was in the hospital, and copies of all the recent blood testing.  Also need to get a bigger binder for holding test results.  This one is full.

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