The Mono

I've been avidly following the news about a possible link between Chronic Fatigue Syndrome and xenotropic murine leukemia virus-related virus (XMRV). It's good and bad news -- good that I may have something I can point to as a cause, bad because it's a retrovirus. Do I have it? Will there be any viable treatment? Could I have exposed my partners to it? We don't know exactly how it spreads yet, though sexual transmission is thought to be possible, and tests for it aren't readily available. The thought that I might have exposed people I love to a virus which causes cancer is frightening.

While reading this NYT opinion piece*, however, I learned something about the debut of CFS to the medical consciousness:

The illness became famous after an outbreak in 1984 around Lake Tahoe, in Nevada. Several hundred patients developed flu-like symptoms like fever, sore throat and headaches that led to neurological problems, including severe memory loss and inability to understand conversation. Most of them were infected with several viruses at once, including cytomegalovirus, Epstein-Barr and human herpesvirus 6. Their doctors were stumped. The Centers for Disease Control and Prevention, the nation’s presumed bulwark against emerging infectious diseases, dismissed the epidemic and said the Tahoe doctors “had worked themselves into a frenzy.” The sufferers, a C.D.C. investigator told me at the time, were “not normal Americans.”

When, by 1987, the supposed hysteria failed to evaporate and indeed continued erupting in other parts the country, the health agency orchestrated a jocular referendum by mail among a handful of academics to come up with a name for it. The group settled on “chronic fatigue syndrome” — the use of “syndrome” rather than “disease” suggested a psychiatric rather than physical origin and would thus discourage public panic and prevent insurers from having to make “chronic disbursements,” as one of the academics joked.

An 11th-hour plea by a nascent patient organization to call the disease by the scientific name used in Britain, myalgic encephalomyelitis, was rejected by the C.D.C. as “overly complicated and too confusing for many nonmedical persons.”

This makes so much sense -- and makes me so angry. It shows how preconceptions in the medical field can ruin lots of people's lives over decades (Chronic Lyme is another example). Patients have been dismissed, doctors have been flagged as quacks, research simply hasn't been done because this wasn't a "real disease". We're decades behind where we should be in finding causes and treatments for it.

I'm glad researchers are finally really looking into it, but the body count has been horrendous. I hope the investigation into XMRV yields something useful, and I hope that the search for other causes and factors continues as well. We need answers.


* Requires a login or Bugmenot.

You'd think that, given a huge pool of healthy early-20-somethings who don't need anything but maintenance, the dental insurance co. would make more money by not covering cleanings and only covering large procedures which are fairly rare. Since it's part of the health insurance bundle we all get as students, the dental portion's small premium is part of the deal for everybody. They'd get to collect monthly premiums and seldom, if ever, pay out on these people. (You could explain it by calling it catastrophic dental insurance, handy for when you sail over your handlebars and eat asphalt.) But nooooo... instead, my cleanings are covered, a cost that is about the same as the total of the premiums, and I have to pay for things like thousand-dollar crowns out of pocket, because that's not the sort of thing my 20-something pool fellows would need. No percentage -- completely out of pocket.

They end up paying back most of everyone's premiums, instead of gambling that this healthy set of college students won't need as much heavy dental work as the pool pays for. Does that make sense?

So not only is it not actual insurance (like house or car insurance), it may not be the best business model either. It's an even more striking example than most health "insurance". Why is this system in place?

I went to the eye doctor again this morning, to get the workup needed to ensure that I won't get glaucoma and go blind at 35. Or something.

I did the visual field test (I hate those things) and got the photographs done. Then I went to see Dr. Graham, who said the tests looked good, and the next thing was to retest the ocular pressure that was measured yesterday. I said, "Oh, this'll be fun." She asked why, and I reminded her that I had reacted to the anesthetic yesterday. Oh, yeah...

She decided not to put me through it two days in a row, and when she caught my comment that I request non-epi anesthetic at the dentist's office, she confirmed with me that I react to epinephrine as well. I admitted that it was just an anxiety reaction -- it spikes my blood pressure and gives me mild panic attacks -- but she said it was relevant because the dilating drops they use are basically pure epi. Oops.

She let me go, saying she'd like to see me back in a year. I suppose, since she's dealt with my dad, that she's not too concerned about my test results either, and feels that monitoring is sufficient. So... boo for being yet another special case (I feel another t-shirt coming on), yay for having a doctor who can cope with special cases.

I went to the eye doctor today. My insurance runs out July 1, so I figured I should get in quickly.

The doctor was quite pleasant, but brisk enough that I didn't ask what he was doing when he gave me drops and a dab to each eye (other than checking to make sure they weren't dilating drops, as I had to drive home). Two minutes after that, as he went to get something, I had a full-blown panic attack. Sure enough, he had given me an anesthetic, and I had the panic reaction I have to almost all topical anesthetics. (We discussed it, and he finally put "anesthetic" under my allergies list... it was the simplest notation we could think of.) The good news is that it was over in about five minutes, and he was able to do the glaucoma test.

I was borderline on the glaucoma test, and with my high prescription, he got very insistent that I get checked out. The result was no great surprise to me, because 1) my dad has the same result simply because he has thick corneas (and I suspect I got it from him), and 2) when has my body ever been standard? I'm not concerned, despite how much I use my eyes, as I suspect that even if I have high pressure, I doubt anything would develop from it for decades yet. But that's just my gut feeling, knowing how my body works.

So they crammed me in for another appointment tomorrow when I'll get the full workup. I also ordered lenses, which are insanely expensive there -- but I didn't like Costco when I went there, and Lenscrafters (which used to be my usual) cleans with 409 now. So I ended up shelling out over $500 for lenses, the insurance picked up the frames; I suspect the frames maxed out the coverage by themselves, so I'm left with the lens expense. There's a reason I don't get glasses more often than every four years or so. *sigh*

So I'm flagged as a patient at risk for glaucoma, unless something tomorrow clears me -- and I may react further to the drops etc. they're using. Wheeeeeeeeee....

Edit: Almost forgot about the first thing... while I was filling out forms, I noted that the release consent form referred to a sheet detailing their privacy practices which accompanied the form... but I could find no such document. I asked, and the receptionist handed me another copy of the office policies. When I asked for the privacy policy, she said, "oh, that's what you're signing." I begged to differ (there was nothing talking about what information they share, nor specifically with whom, nor what happens if they get a court order etc.), but all I could get out of her was "those papers, that you're signing, those are the privacy policy." She looked like she could get very irritated fairly quickly, so I dropped it, but I did find it amusing.

I spent 20 hours in bed today, which was not at all my intention... turns out I picked up a GI virus somewhere, and it struck last night. I was unconscious most of today, woozy from fever and knocked out by Tramadol, which is the only thing that even touches the inflammatory pain I get from the flu. Whee.

I'm feeling a bit better now, though I think my temperature is still a little high, and my head feels like every description of a hangover I've ever seen. I'm trying to drink as much as I can, because my near-coma today made it difficult to replace the fluids I was losing and I woke up with my kidneys screaming at me. They seem a little happier now. My blood pressure is a bit higher too, so I no longer feel like I'm going to pass out if I stand up for five minutes.

I expect to feel a bit better tomorrow, but it's a good thing that I didn't have any plans this weekend, as I expect I'll be rather worn out for the next couple of days. As it is, I'm not sure I can meet my own deadline at work anymore, since I missed today. Sigh.

I get a weekend off, and Murphy strikes again. FML.

To Those Who Think, When Invited to a Pizzeria With a Group, I Should Just Go and "Get a Salad":

Fuck you.

Did that today, at a Greek place with no other options. Bought the salad with the most protein in it, chatted, still felt like my body was wondering when the meal would arrive. Low protein level made me tired and emotionally unstable for the next four hours while I raced to meet a deadline, unable to get supplemental food. Still feel rotten after having a snack during my drive home. Very tired now. Please shut the hell up about "just getting a salad".

Love,
A

Well, I seem to have confirmed another food sensitivity: canned fish. Sigh.

I guess I'll be cooking all my fish fresh from now on... I'll miss tuna salad, though. It's hard to do that from scratch.

Luckily, it doesn't impact most things.

I got my Dr. J appointment today. Hurray!

( The short form: my knee is weak but quite functional now, and I've ditched the cane. )

I'm taking tomorrow off to baby it a little more, with the added reason that I haven't had any opportunity to prepare for the coming week -- I have no food and no clean laundry. Better that I get myself together and feel ready before plunging back in.

Yesterday was Virology lab. We have some plants in a little greenhouse out at the edge of campus, and we needed to check them before lab. So my lab group (three of us), one person from the other group, and Prof. Bryce Falk went out around 2:00. Bryce and Candice, the other group member, were walking, but the three from my group took bikes.

We checked the plants (dramatic symptoms from our unknown virus; that should help with ID) and then took off to get to the lab session itself. I rode out to the bike path outside the greenhouse complex, and just after completing the turn, my front wheel skidded abruptly to the left on the wet pavement. I felt my right knee pop out of joint, and had just enough time to think, "God, I hope I didn't tear a ligament" before I hit the ground.

( All that followed, cut for friends-list sanity... )

So, the upshot: I'm going to be staying in bed today and tomorrow, with the hope that I can walk well enough to limp around at eastbaygreg's company party tomorrow evening. The knee is stiff and swollen this morning, but no worse functionally; I'll see about massaging it and applying heat and Ibuprofen soon. I've been pretty cheerful during most of this ordeal, particularly once I had good cause to assume no serious damage had been done... I think it has something to do with the fact that now I get yet another day off school. Sure, I can't spend it digging in the garden, but I can relax a bit. :)

Done with excitement. Ready for boredom now.

I looked up Valium (benzodiazepam) to see what its mode of action is. I've been a wreck over the whole dentistry thing, and being able to take a sedative to manage the anxiety would be a good thing, no?

About halfway down the Wikipedia page I see the magic words:

central nervous system depressant

Brilliant. Grouped in with ethers and ingested ethyl alcohol, both of which f*ck me over. Guess that's out of the question. I'll stick with deep breathing and being overcontrolling about the procedures.

Why yes, having a damaged central nervous system is fun, why do you ask?

Today I got a formal diagnosis of Multiple Chemical Sensitivity to ethers.

I first got injured in 2000. Kaiser had no idea what to do with me. I saw Dr. Halpern for a while, and while she ordered copious tests (which all came out normal), she apparently did dick shit for documentation. When I saw Dr. Kaplan in 2005, I was only looking for a CFS diagnosis, and that's what I got.

Dr. Brown was quite mellow about it today, admitting that since there are no tests, it defaults to empirical data -- but after nearly nine years of such data, with much work having gone into pinpointing the source of the problem, he had no issue with writing a note on a prescription pad to the effect that I'm hypersensitive to certain cleaning products containing ether. He also promised to pass along a full dictation to my physician to back it up.

Let's see whether this opens any further doors for me.

I was dumb on Tuesday and hung around Bacteriology lab, even though I was reacting to the room. I went home early, but the damage was done.

I stayed home sick yesterday, though I felt well enough by evening to BART down to knaveofhearts' place for our usual Wednesday thing. This morning was a different story.

I figured that fresh air and light exercise might help, so I headed off to school anyway (besides, I have cookies to deliver to my Bacteriology lab partner, as I abandoned her to do the plasmid isolation by herself on Tuesday). I got to Hutchinson and figured out that I lose any train of thought within about three seconds. This is not conducive to doing lab procedures like the PCR I wanted to do today. No work for me this morning.

This exposure is being awfully "sticky". It's been a while since I've gotten a long exposure, and I'm certain now that this is EGBE, the real deal. Somebody must have snuck some whiteboard cleaner or 409 into the lab room late Monday or very early Tuesday. I'm waiting for the department secretary to get back from a meeting so that I can set her to investigate and hopefully solve the problem. I'll have to see whether the lab room has aired out enough for me to go to class this afternoon.

I'm puttering around on the computer, trying to ignore the slight nausea and brainfog... I cashed my paycheck (finally!) and I should run the numbers on that, to find out what my tax bracket is -- I owe taxes on the first, tiny paycheck, so I should find out how much to set aside -- and whether I can transfer funds back to savings now.

Or I could just sit here and glaze.

I've been noticing more distinct periods of exhaustion and high energy. I was fine this morning; now, after lunch, I'm lightheaded, exhausted, and muzzy. That sort of thing has been happening more often.

That's good and bad. Good is that I can figure it out, given some work; bad that it means I'll have to make some changes again. It's probably something environmental causing fatigue and brainfog -- my money is on diet right now. My dietary restrictions are already complex enough that I dread having to expand them, but it would give me enough energy and brainpower to cope with that.

( musing on logistics )

It's been over a year; I figured I should brush the dust off the pages and repost them.

If you are in a position where you may at some point either 1) feed me/take me out to eat or 2) host me at your house, you may find these useful:

My food restrictions
My chemical sensitivities, including a list of safe and unsafe products.

Water flow: 2
Reservoir size: 6
Crack severity: 1

I'm not sure I ever actually explained this one. Each category is out of 10. "Water flow" is how fast my energy replenishes after doing something; high is good. "Reservoir size" reflects my overall stamina: ignoring refill rate, how many things can I do in a short period before I run out of energy? Again, high is good. "Crack severity" takes into account anything which is sabotaging me at the moment -- inflammation, stress, hormones, being sick, and so on. The lower the better, as the more severe the crack in the reservoir, the fewer things I can do before it all runs dry. A higher crack severity than water flow means I'm rapidly headed for a crash, even if I'm not doing much.

So today is... slow. I have a decent amount of stamina, but I'd better not do things too quickly or I'll run out my energy before it has a chance to replenish. Nothing is really putting a drain on me at the moment, fortunately, so I'm just taking my time and being careful. The main thing is to take my activity level down to something my "water flow" level can handle.

Sleep resets the values, but obviously there are factors that influence it from day to day. There are too many variables for prediction, sadly.

It's flu.

It's been so long since I've had a lingering bout of it that I couldn't tell for sure... besides, I didn't get the usual signs of onset. Given that my tonsils sat it out until yesterday, then turned into raw meat again, I suspect the lack of warning was a sign of my currently dysfunctional immune system. Sigh. I also don't remember hurting this badly.

( My day wasn't entirely wasted )


Whether I'll make it to class tomorrow is anyone's guess. I'm almost tempted to say "in for a penny" and write off the rest of the week, since I need to catch up anyway. Biotech's final review is Monday, and I need to do my own in the other two classes... and I need to rest in so many ways. Not sure I could justify going out to the Exploratorium for Pi day on Friday if I skive off, though. :)

I'll be going up Tuesday afternoon, I think, to catch the history TA's office hours and talk to a prospective advisor. No classes that day.

I feel wonderful. For the first time in who knows how long, I just feel great.

Not only have I had two weeks out of contact with 409 -- I was being exposed on a weekly, possibly daily basis up in Davis -- the antibiotics I got for my sinus infection seem to have wiped out the low-grade infection in my tonsils (for now). My immune system is standing down. Add to that lots of fresh air and rest, and wow. More energy = more things done in less time = less stress = happier system = more energy. That's a spiral I can get behind. :)

( What I got done this weekend: )

I'm astounded. I haven't gotten a huge amount of homework done, but my stress level is way down; I feel less rushed, like I have time and ability to get the work done by the time it's due. I feel so much better about being caught up on gardening -- I can start digging any time it dries out enough, and I'm going to sow seeds right on time.

I'm enjoying this. I hope it sticks around for a bit. :)

Remember all those detox reactions I was having over the last year and a half, while my weight fluctuated because of exercise/not eating/stress?

"...you are an extremely lucky person not to have encountered 409 in any of our labs in the last year and a half as it is our primary cleaner and is used daily in many of our rooms." --U.C. Davis Computing Labs Safety Coordinator

Huh.

The classrooms aren't cleaned with it, so I didn't expect the computer labs to be any different.

...



On the bright side, maybe now I won't keep getting random "detox reactions" anymore.

( I am functional, though f(x) has a non-ideal curve. )

( Updated )

The pain eased abruptly about twenty minutes after I took the tylenol last night -- I still hurt, but I could distinguish individual "voices" in the clamor. About forty minutes after that the fever broke.

I got about twelve hours of broken sleep; my ears are totally stuffed up, my neck is stiff, and my throat still feels bruised, but otherwise I seem to be okay. We'll see whether the pain is gone in an hour or so when the last tylenol wears off.

My eye is swollen, but otherwise fine.

Conclusion: I think this was indeed a CFS crash. I'd forgotten how bad they can get. Let's hope I don't get another one like this for another decade, at least...

For now, I have tea.