As of Friday, I’ve officially been diagnosed with Lyme Disease. It’s a clinical diagnosis, partially based on my reaction to antibiotics in December (I was exhausted but the pain and swelling totally disappeared). I’m supposed to get blood drawn (tomorrow, hopefully) to check for Lyme antibodies, but at this point I have enough symptoms that my GP was willing to call it. See, the tests for Lyme are pretty unreliable – the false-negative rate varies from 30-50%, which is pretty absurd.
I’ve been on antibiotics since Friday afternoon, so I’ve now got 2 days worth of pills in me. I’m tired, but my sleep schedule has been pretty messed up lately. Have any of you ever seen a mouse or a hamster (or a rat, I suppose) slip while running on its wheel? If they’re going the right speed, they kind of get thrown around in there like clothes spinning and bouncing around in a dryer. That’s what my sleep schedule has been like lately – I’ll get it going reasonable for a day or two, and then it’ll get majorly screwed up again, and I’ll be thrown around for several days by that. It doesn’t seem to matter whether I take the measured approach to fixing things (adjust by just a little bit at a time) or the radical approach to fixing things (either stay up a huge amount of time or knock myself out with sleeping pills, either way designed to get me asleep at the appropriate time).
This video gives you an idea of what I’m talking about: http://www.youtube.com/watch?NR=1&feature=endscreen&v=buUKHggrhd4 (I wanted to embed it, but it looks like WordPress wants to charge $60/year to let me embed videos. wtf, man? I just want to embed ONE now, it’s not something I do a lot…grr)
That? That’s what I feel like with my sleep schedule right now. And I keep having to jump back on the wheel because, well, you can’t go without sleep. Not to mention, a girl’s got to get to her doctor’s appointments and her classes.
I’m also dealing with what seem to be fairly typical Lyme symptoms.
Rage. Oh my god the rage. There are things going on that it’s perfectly normal to get annoyed about. I’m not annoyed about them. I want to verbally eviscerate my fiance because the house is messy. The fact that he’s stressed out to the point of being somewhat emotionally fragile at the moment (which means that I feel like I should be more careful about snarling at him than usual) is producing a very counter-productive reaction: I’m even angrier and want to yell at him even more. It’s at its worst late at night, which would of course be an especially bad time to yell at him because he’s an early riser and tends to be impressively incoherent when woken up in the middle of the night.
The screwed up sleeping schedule I mentioned is another typical Lyme symptom.
The forgetfulness is…I don’t have words for it. I sometimes lose track of conversations mid-sentence. I’ll be saying something and then all the sudden I have NO IDEA what I was saying. It’s exasperating and it makes me look stupid. It also frustrates the ever-loving crap out of me. I also can’t remember anything I’m supposed to do, nor can I remember to ask my fiance to do things when he’s awake, which means that I crawl into bed at ungodly hours of the night and wake him up to ask him to do something, which he has trouble remembering (because the poor guy was asleep), which only adds to my rage issues. Completely unfair, and I KNOW it’s completely unfair. Which only makes me angrier. *facepalm*
I suppose I should add a psychiatrist visit to my to-do list, to deal with the anger, and I know I need to see my sleep specialist, only I never remember when his office is open and I’m free to call.
All in all, the collateral damage from this damn infection is impressive and frustrating and ye gods do I need this thing to go away. I mean, I’m not normally a tranquil person, and I tend to have bad sleep patterns and a bit of being scatterbrained, but this? This is just absurd and unlivable.
Gosh hon, how do I understand? Let me count the ways. . . .
Yeah, I’ve never heard anyone describe the sleep issue in terms of the mouse-jerked-off-the-wheel phenomenon, but it’s pretty accurate. Lyme and co-infections cause all sorts of sleep hell. I’ve been in a particularly bad insomnia phase of late, consisting of sleeping only 2-3 hours at a time, max, and usually not in a row or at night. (Which is why I’m commenting at 5:30AM.)
Lyme rage — yes it is a real thing, and it feels horrible. I didn’t know about Lyme rage when I was going through the worst of it, so people in my life just thought that I was a complete asshole. And I was pretty miserable. That is one symptom I don’t have anymore, than dog! I think it was a lot of the reason I lost so many friends — the Lyme rage and the agitation and hopeless that were gifts of Bartonella. If you visit any of the Lyme sites, such as Lymefriends.org, you’ll find a lot of companionship with other people who have gone through or are going through Lyme rage, as well as spouses, family, etc., who know what it’s like to live with someone who has it.
I got a little concerned when I saw that you’re going to see a psychiatrist. Most psychs don’t know about the neuropsychological effects of Lyme, which are diverse and can be very heavy-duty. A LOT of people get misdiagnosed as having primary mental illness for symptoms that are actually caused by tick-borne disease. I’m just concerned a shrink will want to prescribe you meds for rage, and that won’t help because it’s the bugs causing the problem, and what will get rid of the rage is killing off all the bugs (which does take time).
IME, the best way to handle psych herxes are to be 1. aware that it IS NOT YOU, it’s the bugs — and get lots of support and affirmation from other Lymies on this, 2. find coping strategies (we can email or talk on the phone about this, if you want) for preventing lashing out at others and also for ways to get grounded, 3. time (allowing the antibiotics to do their thing), and 4. reducing doses of abx to make the herxes less severe so you’re not going through hell trying to get better as fast as you can (I made this mistake), and 5. making sure that you are treating coinfections, which can also cause psych symptoms. Different TBDs are known for causing different psych symptoms, though there is overlap, for sure, but if you have a LOT of psych stuff, look into Bartonella as a possible factor.
As for the Lyme brain, yes, it totally bites. I’ve been having a lot of grief lately over how bad my cognitive impairment has been over the past year or so.
I’m very sad that you’re going through this, too. Very frustrated and sad and triggery that Lyme continues to rampage through so many lives I care about. The two silver linings I see to this are: 1. Now you can be on a path to healing, which you would not have been if un/misdiagnosed, and 2. more people will learn about Lyme through your blog — especially people with rheumatic disorders and pain and joint and soft tissue diseases, etc. — because I really think Lyme goes undetected in this population a LOT, either because people are misdiagnosed as having, for example, fibro or RA, when it’s actually a TBD, or because people who already have a pain or joint or soft tissue disorder then get Lyme/TBDs, and it’s chalked up as part of the extant disability and written off (which is what happened to me when I got Lyme about 10 years ago, and it was never dx because we thought the migraines, body aches, and other symptoms were part of my CFIDS/ME and MCS).
Good lord, this is a long comment!
Nothing wrong with a long comment!
I’m hoping that my sleep specialist will be able to help with the sleep-from-hell. It’s highly inconvenient and it really makes me less than functional.
The reason I want to see my psych about the rage is that I DO have an underlying psych disorder (bipolarism). I don’t know how that’s interacting with the Lyme rage. He’s a good guy, and if I bring him documentation that talks about Lyme rage, he’ll read it (albeit it slowly, as he has very low vision). I actually have tried using medications that help me with bipolar anger/agitation/upset/panic, and it quieted the Lyme rage attack right down. I just want to check in with him if I’m treating it that way, y’know? So far, the only ‘new’ psych stuff I have going on started as agitation late at night and has turned into rage late at night. It’s pretty completely predictable on timing so far, which is a relief. I know that if I’m blisteringly angry at 2 in the morning, the appropriate and proportional response is probably a little bit of irritation.
Unless of course you count the memory thing as being a psych thing; I really don’t. It’s one of the most annoying symptoms I’ve got, really. I loathe not having access to my own memories and thoughts. It feels like someone password locked sectors of my brain on me.
I finally managed to get my Western Blot drawn today, so I’ll have documentation as well as a clinical diagnosis. I kind of hope that it comes back positive, as that would erase any existing doubt, you know?
I’m sorry you’re going through this, but I’m glad you now know what’s going on with your body. Could you email the lyme rage documentation to your doctor? Since he has low vision, he might have screen magnification or a screen reader to read it aloud to him.
He does have screen magnification, but I don’t have his email address. Maybe I’ll bring it on a flash drive so he can just plug it into his computer…thoughtful idea, Martha. I’ll try to remember it when I get in touch with him.