HealingWell
Search Close Search
☰

off we go...

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/15/2014 5:17 PM (GMT 0)
OK, here’s day 4 of the hostage situation… I started abx Tues PM.

Within hours, a psych herx. Felt like I was going to fall off the edge of the world, screaming tinnitus, confused thinking. The calm part in the middle of me said, “hey, you can get through this”.

Next day, woke up with some old pains reappearing, but not much. Thinking a little clearer. Occasional twinges of musculoskeletal pain moving around. Wondering, ***? Do I have Lyme or not? Thought I was supposed to be getting buried by a mean herx. Doubting the dx, doubting the paradigm.

Day three, clear thinking, no tinnitus, some increase in back/neck/knee/shoulder/foot pain, but almost no neuro signs at all. Best night’s sleep I had in years. Then got a crazy neuro herx that made me essentially nonfunctional the rest of the day. Only lasted ½ mile on the treadmill and 15 min in the sauna, just gave up and vegged out at home. Couldn’t even think straight or read English at times. Screaming tinnitus, like a train going by all evening.

This morning I feel ok. My foot started hurting again for no reason, back and neck are stiff, but at least a lot of the wool has been unstuffed from my head for the moment.
This is turning out to be a wild ride!

Still waiting for test results, most of them should be available next week.
Posted 11/15/2014 5:20 PM (GMT 0)
Of course, my biggest fear is that all results are totally normal and I'm just a kook looking for an illness.
Posted 11/15/2014 6:06 PM (GMT 0)
You're not a kook for looking for answers. Since you're having reactions after taking the abx, it shows you're stirring up something and it sounds like many Lyme stories I've read. Are you seeing an LLMD? Sorry if you said already and I forgot, but I just want to make sure you are seeing one so you get the correct diagnosis. Hang on tight!
Posted 11/15/2014 6:40 PM (GMT 0)
Yes, I'm seeing an LLMD, and I think he's a good one. He's convinced it's Lyme/Bart +?

I also saw an ID doc last week who ran a Lupus panel, ESR, RF, all came back normal. Because the WB came back negative he's sure I don't have Lyme. So I played along... "if it isn't Lyme, what is it? There's a lot of illnesses that cause fatigue, sick syndrome, possibly elevate the WBC a bit. If it looks like Lyme to me, what else might it be? I'm not a Dr, you're the expert, I'm here for a solid differential." Oh, that punched his buttons all right. That was at the end of the visit.

Here's another good quote "doc, I've worked with some of the best ID/IM docs in the region (list docs). I'm an RN and a trained observer. These things that are happening, they're not right. I'm not making them up. These are objective signs. (list signs). I've been told it's not Lyme. OK, so it's not Lyme that ruined my career and disabled me. What did?"

Strange, the ID doc acted kind of weird and defensive, my wife noticed it too, he really hardly even examined me. He checked my thyroid for swelling but didn't touch my parotids, which were so swollen they were visible! The whole thing was strange with that guy.
Posted 11/15/2014 6:53 PM (GMT 0)
...anyway, all signs seem to point to a very old case of Lyme, so in the absence of another dx I'm going with tx for that. Next up, a neuropsych eval on Dec 1st. Hope I'm herxing like hell when I go in for that one! LOL
Posted 11/15/2014 8:15 PM (GMT 0)
Wow SpeyFisher. Interesting visit with the ID. I feel fortunate that I've never seen one. Some of the worst stories I've heard about conversations regarding lyme have been w/ ID specialists. It's as if they are most afraid of lyme but I can't figure out why. I wonder what they're taught in school.

Anyway, keep posting about your experiences and treatment. And of course, your neuropsych eval. ;)

-p
Posted 11/15/2014 9:06 PM (GMT 0)
you know, I was thinking the same thing about this ID. I went in there with an open mind, just wondering what he would say, and I was absolutely dead set against having "the" discussion with him.

I didn't argue against anything he said, I just said "so, what could this be? I'm not making it up or malingering, I've successfully built a career and a life despite it, I've been a tough guy for a long time. I just want to get back to work and take care of my family. I went to therapy for years, took every class of antidepressants, did all the work. I know myself very well, and you don't just imagine swollen joints or getting lost on the way to the corner store..."

He knew from the git-go that even in my confused state, I was still a sharp RN and wouldn't buy the usual BS. He'd ask me a question and then cut my answer off ten words in. He kept going in circles, looking for a hole in my story. He got very frustrated. There wasn't one.


edit: come to think of it, IDs are probably very afraid of the implications of a Lyme epidemic. It's a nightmare to dx and tx.

Post Edited (SpeyFisher) : 11/15/2014 2:09:39 PM (GMT-7)

Posted 11/15/2014 9:23 PM (GMT 0)
Not sure where you live, but our psych dr. is a lyme specialist - excellent.

Epidemic is the word - HUGE.... and no one is listening... it's a crime...
✚ New Topic ✚ Reply