Still Lyme-y

So I continue to be sick.

I finished my course of antibiotics some time ago. Within a week it was clear I was rebounding. I’ve been measuring my wrists and trying rings on my fingers, so I have objective measurements that show that the antibiotics helped and that things got worse when I was off of them. My GP is very, very popular, so it was hard to get in with him. I saw other people in his office, and they didn’t want to continue treating me with antibiotics. They wanted to send me off to specialists – first the rheumatologist, and if he wasn’t happy treating the probably-Lyme, then to Infectious Diseases. Certainly, they didn’t want me in their hands.

I finally got in to see my GP yesterday. His take on the situation is that either I have Lyme or I have some other systemic infection that is causing generalized inflammation. Regardless, the antibiotics bring down the inflammation and give me ENORMOUS benefits to my quality of life, so he is happy to continue treating me with them. Thank god. As of yesterday evening, I am back on the amoxicillin. We talked about options, and agreed that A) I am going to see an Infectious Diseases specialist and B) we are going to use an IV antibiotic. For treating Lyme, the oral drug of choice is doxycycline, which I react very, very badly to.* Because of that, I am taking the second line drug, amoxicillin. According to my GP, oral doxycycline can be as effective as the IV drugs (though that doesn’t match up with my recollection from researching this – my recollection is the IV drugs beat doxy), but amoxicillin cannot compete on the same level. That’s why he agreed to the IV antibiotics.

He’s still treating me relatively conservatively – not really high doses, not really long courses – but given all of my other conditions and my general sensitivity to medications, I think it’s for the best. If this round doesn’t take care of things, we’ll have to reconsider what we’re doing, but by then we’ll have a specialist on board to advise. I can only hope that the people in the Infectious Diseases department believe in Lyme as a devastating, long-term illness that can be hard to wipe out rather than the image some organizations present, where Lyme is supposed to be easily knocked out with a single, relatively short course of antibiotics. I do not want to continue living like this – I am in an enormous amount of pain, to the point where it’s hard to care about anything because existing hurts. Even lying on my very soft, comfortable bed hurts – if I lie on my side, my ribs and oblique muscles on the side that is up feel like they’re getting worked or stretched very hard and become painful (which makes me need to flip often), and if I lie on my back, my back and neck start complaining. And lying down is generally the most comfortable thing I can do. Right now, I need to wake up at least a half an hour before I need to start moving, so I can take a pill for the pain and wait for it to kick in. Best of all is when I wake up 2-3 hours before I need to get up: I can take the pain pill then, and go back to sleep. If I’m lucky, I’ll wake up again a little while before I have to start moving, because for some reason, the pain fades slowly if I am simply awake. I have no idea why, I only know how it works.

Blah. All of this pain, this frustration, and I have other things that need to be dealt with. I need to see my gastrointestinal specialist because my stomach has been very, very bothersome of late, and I need to talk to my sleep specialist because of a medication mix-up. I need to make an appointment with the Infectious Diseases person, who I am quite nervous about. I need to decide whether or not to cancel the rheumatologist appointment I have for Monday (my instinct is to cancel). I need x-rays and possibly an MRI done of my neck because I have pinched nerve symptoms; for that matter, the headache people wanted an MRI of my head, too, due to my headaches.

All of that, and I am sitting here in a cloud of smelly dog-fart, writing this post, because…well. Because I know people come here to read what it’s like to live my life, with my conditions and my service dog and my dreams and my fiance. Because on some level, this gives me a feeling of having some meaning, if only to get people to understand a bit more about what it’s like to be disabled but not in one of the ‘typical’ ways. (I tend to think of being blind, deaf, and having some form of paralysis as being the better understood forms of disability, though I know that even with those, the understanding of outsiders is horribly inaccurate.)

Nnf. This rambling, wandering, probably less-than-polite post is brought to you by probably-Lyme. (Why the hell is it always probably-something in my life?! I swear, not a single condition that I’ve got was easy to diagnose, and every stinking one of them was either missed or nearly missed by at least one medical professional before I found someone who got it, and then started getting the treatment I needed.) Anyhow, I think that’s intended to be and explanation, and perhaps something of an apology. I know I am neither at my best nor writing as often as I would like (by a long shot on the latter at least!). I am, nonetheless, here. That has to count for something.

*It starts with flushing in the face and on the chest, then moves to a kind of dazed confusion. Finally, my tongue and throat begin to swell, which is called anaphylaxis. It’s one of the most dangerous reactions to medications that exists because it will eventually make it impossible to breathe. Especially in someone with asthma (like me), there is potential for the swelling to go all the way down into the lungs, at which point you are DEAD – nothing they can do. Fortunately for me, anaphylaxis set in quite slowly, so they were able to get antihistamines and adrenaline into my system before my breathing was even labored.

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Oof

Boy am I ever glad I had done some reading about Lyme treatment before I started it.

Doctors rarely think to warn their patients about likely side-effects of treatment. In the case of Lyme, I’m not talking about the direct side-effects of the antibiotics, though to be perfectly honest those are pretty nasty too. Instead, I’m addressing what happens to a body when you treat a major infection. You see, if you have a lot of just about anything growing in your body and start killing it, you get some fallout. That is true whether you are talking about bacteria, viruses, yeast, or bigger parasitic organisms like worms.

In my case, it has meant an enormous increase in fatigue. It is also affecting my ability to think and communicate clearly. My memory is an absolute crapshoot, with more trouble remembering comparatively recent events (in the last year) and not as much affect on older memories. The Lyme was doing all of those things to me before the antibiotics; the antibiotics just made things worse. Ugh.

On the other hand, there were some swift gains. The swelling in my hands went away very quickly, and my pain levels dropped substantially. Fortunately, the fatigue and brain side effects seem to be fading, so I am getting closer to my normal. This is definitely a good thing.

Now if only antibiotics didn’t tend to result in yeast infections for me. This long course of antibiotics has caused excruciating yeast infections. I didn’t know they COULD hurt like that; I had always kind of assumed that people who complained about pain during yeast infections just had low pain tolerance. I really should know better, being someone who lives with chronic pain. Ah well. At least I can just take a pill and it improves things enough to make the pain stop for a couple of weeks.

Anyhow, all of that is why I’ve been so very quiet lately. I’m having trouble making it to my classes (which meet for a total of about 8 hours a week), so things like blogging have been a little extraneous. Not to mention, it takes more brainpower for me to blog than it does for me to do more frivolous stuff like muck about on forums. I don’t know how ‘back’ I am yet, but I am trying!

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Official

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.

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That was interesting…

A couple weeks ago, I got an ear-and-sinus infection.  It was a pain, I felt like crap, etc.  I went to my GP, and because he’s used to how infections do a number on me, he was willing to give me a relatively long, strong course of amoxicillin to fight the infection.  A funny thing happened, though.

About 3 days into the antibiotics, I started being more exhausted, but strangely there was less pain in my joints and muscles.  As I continued through the antibiotics, this continued – my joints and muscles felt better and better.

I got curious and googled to see if the antibiotic was one used to treat Lyme disease.  You see, my friend Sharon from the blog AfterGadget, who has chronic Lyme, pointed out a while ago that my symptoms sounded like Lyme.  Amoxicillin is the second-line drug used for treating acute Lyme disease.  The fact that I felt so much better pain-wise is, I think, the clincher on a clinical diagnosis of Lyme disease.  I haven’t had a lab test run yet, but to my mind that’s somewhat irrelevant.  You see, the lab tests for Lyme are impressively inaccurate and prone to false negatives – the studies say that the Western Blot test, which is the most commonly run test, gives false negatives to 30-50% of people who actually have Lyme.  There are better tests, but they’re only done by two labs.  I’ll be asking my doctor to write for one of those, but I already have the paperwork for a Western Blot (and my insurance covers testing 100%), so I’ll be getting it done anyhow.  The fact that it misses a lot of cases doesn’t mean it misses all cases, so it’s worth doing as it is less hassle than getting one of the other tests run.

I’m actually really happy about finding out I almost definitely have Lyme.  While it may take a couple of months to totally clear this out of my system, this is something that can go away.  To me, at least, this is enormously good news.  Way better than adding another hard to pinpoint, hard to manage condition like a variety of arthritis to my long list of diagnoses.

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Occasionally, I hate medical professionals

These times almost always come when a medical professional has declined to recognize that I DO know what’s going on with my body, something unusual is happening, and I want it to be taken care of.

Now, as I think I mentioned in my last post, every time I get the flu, I experience it as a GI bug.  Now, you add POTS into the mix, and you have someone who is easily dehydrated and who is hit harder by dehydration (and the loss of electrolytes that tends to come with it) than the average person.  Just reading that sentence, I think you can imagine that this is not a good combination of things.

The ONLY reason I went to the doctor’s office today is because my GP has told me that when this happens, I need to get in and get fluids so we can prevent ER trips that otherwise tend to result from this sort of thing.  Even if an ER trip might not have ended up necessary, having fluids added to my system helps me bounce back a lot faster – I mean like 2-3 days faster, if not more.

Because I had to make a same-day appointment, I couldn’t get in with my GP.  I saw a nurse practitioner in the same-day area.  I’ve seen this same NP before, and it was an…underwhelming experience.  I had gone in because I had back pain in an area where I don’t usually have back pain.  He informed me that my back pain was because of my ‘central obesity’ – in other words, ‘your back hurts because you’re fat’.  Nevermind that I’ve had back pain issues since I was 15 and weighed 85 lbs.  (No, I didn’t have an eating disorder, I’m small-boned everywhere but my shoulders, and I was mildly athletic back then.)

So when I saw him walk in, my heart sank.

I learned all sorts of fun things today.  Apparently, when you’re 27, 100.0 doesn’t count as a fever – you need 100.5.  And that part of the doctor’s office doesn’t do IV fluids.  Oh, and neither would the ER, if I went there (All the more fun because I’ve gone in to the ER dehydrated a bit further than this and they…give me IV fluids and an IV anti-emetic).  And I wasn’t ‘really’ dehydrated because my heartrate wasn’t elevated and my blood pressure was only a little low.  Oh, and Sharon, just so you know, the NP thinks a Lyme titer on me is a waste of time because I didn’t get a bulls-eye rash (though I was insistent enough about it that he gave in – I didn’t bother mentioning that only 70% of people with Lyme’s get that rash, I just kept on about all of the other tests being negative except one for inflammation and I WANTED it, damn it!).

I’m mad.  I waited over an hour to see him.  He didn’t help me the way my GP said they would be able to help me.  He didn’t even really LISTEN to me.  I think he’s one of those people who went into medicine to be Right, not to help people.  I spent energy and effort I didn’t really have because I believed I could get help, and all I got for my effort was a parking ticket because they weren’t done with me until 1 hour 45 minutes past my appointment time.

I don’t feel good, and I’m sick, and I know the only thing that has consistently worked to make me feel less sick when I’m like this is IV fluids, and I couldn’t get them.  I would have been half-tempted to drop myself off at the ER except I was already at the end of what I could do, and the ER waiting room was PACKED.  (I know this because my roommate got herself sent to the ER today, for what turned out to be a hellish migraine, and I had brought some books to give her in case she was going to be stuck there for a long time.  Said roommate is awesome because even though she was in the ER for 6 hours, she stopped on the way home and got me a bottle of Gatorade.)

The fiance came home early even though it might have meant more traffic because on top of everything else, my normally very responsible aide had a bit too much to drink last night and was too hungover to come in.  We lucked out and traffic wasn’t too bad (I guess because everyone else headed out early for the holiday weekend?).  But yeah, I’m sick and spent energy that could have gone towards continuing to get well on a wild goose chase.

Perhaps the worst part of all is knowing that if I had been able to get in to see my GP, I have no doubts he would have given me the IV fluids.  And the lyme titer test, without a fight.

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WHOMP

Every now and again, you have times that really shove it in your face that you aren’t an able-bodied person.

For me, one of those times is when I get the flu.  What everyone ELSE gets as a regular flu bug, I get as a horrible stomach bug that almost always lands me in the ER due to dehydration.

I’m dealing with one of those right now, which is why I’ve been so quiet of late.  I hurt, and I’m sick, and I have the mental agility of a drunk.  Sadly, the fiance is working for a program for brilliant kids that has him hours away from me, and the roommate is also quite sick, so there is nobody here to take care of me but me.  Well, and Hudson, but sadly I can’t send him to the corner store for gatorade or to the pharmacy for regular medications.  I am hoping my doctor’s office can get me in tomorrow and give me a bag of IV fluids so I can stay out of the ER.  If my general practitioner’s office can’t see me, I’m going to call the GI’s office and hope they can manage to give me fluids even if they can’t get me in with my GI (which  I don’t think is necessary – all I’m after is something to keep this ‘just’ a flu and not flu + severe dehydration).

I feel like a rollerblader colliding with a lamppost.  Like I’m going to peel off and fall on the ground any moment like a cartoon, but for now I’m kind of hanging there stunned.

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Not so cute

So, it turns out that Hudson and I have matching ear infections.

His is still at an early enough stage that I may be able to clear it up by just cleaning his ears twice a day. Mine, on the other hand, is now an ear and sinus infection which is going to require antibiotics to clear up. I just started them yesterday and have a 10 day course to take. It’s not exactly my idea of a good time.

Blah. I’m supposed to be taking depositions in class tonight, and here I am with my ear screaming pain. Just what I needed. The stupid thing has been fairly quiescent, just feeling kind of pressure-filled, but as of about 20 minutes ago, it started to feel like someone was poking around in my ear with a knitting needle.

Gah.

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Happy? New Year

Well, I hope all of you had a better new year’s eve than I did.

At about 11:30 on Dec 30, I got a migraine. A bad migraine. One of the worst migraines I’ve ever had. I took my meds – the last dose of one of them, which is scary because I can’t get more for a bit over a week and I’ve had 8 migraines in the last 3 weeks, which suggests I’ll have another one before I can get meds. Unfortunately, the med I took the last dose of is my big gun, the heavy hitter that has the greatest likelihood of actually doing something. Sadly, the meds hardly touched it. The high 8 to low 9 (on a 10 point pain scale) headache, the kind where the pain makes it hard to see and I lose track of what people are saying, retreated down to about a 7.

Anyhow, so this migraine was a bad one. The entire front of my head was searing agony. I felt like I had a wall in front of my head, and a wall a couple inches inside of my head, and something pumping more and more pressure into the gap between them, until it seemed certain that my head would explode, even though it didn’t. Add to that the other effects of a bad migraine – the shaking, the violent vomiting, the dizziness, the sensitivity to light and sound – and I was in bad, bad shape. (Thankfully, the boyfriend was okay with being woken up to keep cleaning out the bowl I was throwing up in so I didn’t have to attempt to run to the bathroom while dizzy and when motion made everything hellishly worse. He’s awesome like that.)

At 5:30, I took a dose of another migraine med (that I couldn’t take at the same time as one of the others I’d taken, so I had to wait until it had worn off) and a second dose of one I took before. Medicated, my migraines tend to last about 6 hours at most, so I’d hoped to just wait this one out. Not so. Within half an hour, it was ramping back up to where it had started, and that was when I gave up and we went in to the ER.

(where a bad handling service dog thing happened that I’ll get back to in another post when I’m feeling better)

The real problem with treating migraines is that there’s a limit to what you can do about them. Basically, you medicate and wait – that’s all there is to do. At the hospital, they can (thank god) add some pain meds. So I got another medication plus morphine.

It’s a damn sad thing when a combination of a whole pile of medications and morphine only take your pain level down to around a 3. And it wasn’t long before it started back up again. Before an hour had passed after the morphine, I was back to a 5. At least they managed to get me to stop throwing up.

Eventually, after they added yet another medication and some tylenol, I got down to a 2…if I kept my eyes covered so it was completely and utterly dark and had ear plugs in. At that point, frankly, I gave up. They had me drink some juice, because they were worried that I’d start throwing up again, and when that stayed down, they sent me home to wait out the rest of the migraine.

In all, we were at the ER until 11:30. And let me tell you, with EDS and fibro, the beds in ERs are painful. No matter how often I shift, no matter how many times the boyfriend changes the angle of the upper part of the bed, I know I’m going to come out feeling like hell.

We got home, I ate a couple of theoretically inoffensive crackers, and I threw up. I think all of the throwing up during the night may have started my throat bleeding; it certainly looked like there could have been old blood in what I threw up. Splendid. However, my stomach stopped hurting after I threw up and I was too damn exhausted to care.

I laid down and slept a few hours. I was in so much pain from the combination of throwing up (which is hard on back and abdominal muscles) and being on the ER bed that we were afraid I had the flu as well as a migraine, or something like it. For that matter, I’m still not certain that isn’t the truth – I’m stiff and sore and ye gods do I feel like hell.

But I’m doing a bit better. The headache comes and goes, but stays mild enough that the meds I do still have are enough to take care of it, if I lay down. I’m eating, though not much – maybe a third or a half of a cup at a time, plain steamed rice or chicken noodle soup.

That’s part of the trouble with multiple illnesses – they combine in very annoying ways. The laying down that my head needs is hard on my joints (EDS) and stiffens up my muscles (fibro). The stiffening and tightening of muscles in my back and neck (fibro, probably has an EDS component) is actually a trigger for migraines. The exercise my muscles need because of the fibro would probably make me throw up right now, because my head is still…not happy.

We hadn’t planned on doing much for New Year’s. I’m typically up until 12:30 or 1:00, so the boyfriend had told me I should wake him up for the ball drop, and we’d watch it on TV and have a new year’s kiss and go to bed.

In point of fact, we were both exhausted and cranky, and my migraine recurred, and the noise of our neighbors and fireworks and…everything…was painful. All I wanted was sleep, sleep where my head wouldn’t hurt, and I got kept from that for quite a while.

So I hope you had more fun than I did!

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