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February 11, 2005

Misprescribed
Posted by Teresa at 10:58 AM * 172 comments

I haven’t wanted to say so, but lately my narcolepsy has been much more disabling than usual. I’ve been descending further and further into slow loris territory: slow, easily confused, physically uncoordinated, prone to error; capable of doing one thing at a time, and that only if I concentrate. As soon as I stop doing it, my body goes into full-rest mode, and my breathing drops into what sounds like the early stages of sleep. Nothing moves then unless I consciously move it, which is where the slow loris part comes in.

If you’re normal, you reach for a pencil or turn your head to look at something pretty much automatically. It’s relatively fast. When I’m running at these primitive clock speeds, going from a resting state to movement isn’t automatic: [?] [thing to look at?] [turn head] [continue turning head, look at thing] [thing?] [ah, yes] [if finished, drop back to resting state]. It can look odd. If you’ve never seen a slow loris move, imagine instead a simply-programmed automaton moving smoothly but at half speed.

Forgive me; I very nearly digress, though that’s part of it too. When everything takes this long, and you can only hold on to one task at a time, it’s easy to forget your initial purpose, and take your cues from the matter nearest to hand: a drunkard’s walk, digression succeeding digression. Vast accumulation of unfinished weblog posts.

Yes. Anyway. Narcolepsy, definitely of the bad. My weight’s gone up. I have trouble focusing my eyes. I have trouble staving off depression. I have trouble navigating and doing math. Small complications make long delays. Over the last couple of weeks I’ve noticed that my hands have started curling up whenever I’m not consciously doing something with them: increasing muscle weakness. Doubtless that’s why I dropped so many ornaments when I was taking them down off the Christmas tree.

Finally, today, Patrick noticed what I couldn’t: my Cylert tablets (generic name pemoline, my main prescription), which are bitty white pills, seemed bittier than usual. Checked the label on the prescription bottle. They’re the wrong dose, half the strength they should be.

Oh. No wonder. No (insert here long string of bad words we all know, with many repetitions and grammatical variations) wonder.

That’s at least six weeks at the wrong dose. It may have been four and a half months, if the previous prescription-plus-refills was written to the same strength. My life is lived on narrow margins at the best of times, and I’ve been on a half-dose of my medications. No wonder it’s taken forever to catch up after that round of the flu. No wonder everything’s been taking forever. No (emphatically unrepeatable) wonder.

…If I allowed myself to think about how much of my life has been eaten up by crap like this, I’d become unmanageably angry, and there’s those narrow margins again: I can’t afford it. For however long it took me to come to terms with it, that much anger would suck up all my available attention and energy. I might hazard it if I knew in advance how long it would take, but I don’t. So instead I rage briefly, then go back to my eternal game of catch-up. It may be justifiable anger, but I won’t trade the rest of my world for it.

Comments on Misprescribed:
#1 ::: PinkDreamPoppies ::: (view all by) ::: February 11, 2005, 02:18 PM:

You have my long strings of emphatically unrepeatable words directed at this twist in your life.

I admire your resolution to not indulge your rage. I've had nightmares about someone or something messing with my medications and the very thought makes me apoplectic. How you can have it actually happen to you and still say that you won't indulge your anger but briefly . . . It's beyond me.

#2 ::: Graydon ::: (view all by) ::: February 11, 2005, 02:35 PM:

Get well soon!

And may the correct prescription promptly arrive!

(I am very lucky that all the stuff I presently need to keep my brain chemistry adjusted is non-prescription, but _yugh_. Your doctor might have re-written the prescription at half the dose and not told you? )

#3 ::: sennoma ::: (view all by) ::: February 11, 2005, 02:42 PM:

That's just awful.

Get well fast! (Get fast well!)

#4 ::: Lucy ::: (view all by) ::: February 11, 2005, 02:50 PM:

It is infuriating, and yet I am delighted to hear you now know what the problem is and can make immediate improvements by (presumably) doubling your dose until the prescription strength error is rectified. I hope you feel better very, very soon.

#5 ::: Dan Blum ::: (view all by) ::: February 11, 2005, 02:51 PM:
Your doctor might have re-written the prescription at half the dose and not told you?

Based on my experience, I think it's at least as likely that the pharmacy in question either filled the scrip incorrectly, or was out of the stronger pills and filled the scrip with twice as many of the half-strength pills. The latter is defensible if you tell the person the scrip is for. If you don't, it's not.

But whoever made the mistake, it's pretty bad.

#6 ::: JamesG ::: (view all by) ::: February 11, 2005, 02:54 PM:

I hope you are feeling more yourself soon.

"imagine instead a simply-programmed automaton moving smoothly but at half speed."

Much like the brain of the average Bush supporter.

#7 ::: Edd ::: (view all by) ::: February 11, 2005, 03:02 PM:

Manoman, I hope this gets corrected very soon! We need as much of your brilliance as we can get.

#8 ::: Ray Radlein ::: (view all by) ::: February 11, 2005, 03:06 PM:

Wow. The cognitive symptoms sound awfully familiar to me, although my physical symptoms are fairly distinct; but, mainly, wow. Kind of odd that I'm on a narcolepsy medicine (provigil) for my CFS/ME, and you're on an ADHD medicine for your narcolepssy (although each one makes sense as part of a healthy diet of multiple pills, no doubt).

Persephone, our great big momma cat, is on a kind of kitty prozac due to the fact that she is prone to seizures, of a sort, wherein she thrashes about biting her own arm (or any part of our bodies that happens to get in the way if we're not careful). Anyway, the last time we got her refill from the pharmacy, I opened the bottle and got concerned because the pills looked different. Since they came from a compounding pharmacy, it was possible that they had just used different pill casings; but still, I did a little research and then called them to check — and sure enough, they had accidentally sent the human dose of the pills (50mg) instead of the specially-compounded feline dose of 5mg.

I don't want to think about what that would have done if we hadn't noticed.

#9 ::: Teresa Nielsen Hayden ::: (view all by) ::: February 11, 2005, 03:06 PM:

Poppies: Sorry to say, I've learned it through long practice.

Graydon, should I ask? The only neurochemical adjustment I've met that tasted that bad was liquid GABA mixed with synthetic grape flavoring. I'd mix it with orange juice, toss it down fast, follow it with water or more orange juice, and then scrub my tongue with a damp washcloth to remove any remaining traces.

Hey, Lucy. Nothing you haven't seen in years past—but yes! Infuriating! I will now go spend some of this energy on errand-running and house-tidying.

JamesG, I can't think that's how it works; otherwise they'd reach the same conclusions I do, but even slower. Pity, really; they could even now be concluding that Georgie Boy is not really their friend, and be starting to feel suspicious about those WMDs.

#10 ::: Anna ::: (view all by) ::: February 11, 2005, 03:08 PM:

Yow. I'm glad your husband was able to catch that problem, and that y'all get it worked out ASAP with your doctor!

#11 ::: Patrick Nielsen Hayden ::: (view all by) ::: February 11, 2005, 03:13 PM:

It wasn't the pharmacy. The problem is that Teresa's longtime neurologist has left the practice. The clinic he was associated with is continuing to supply prescriptions while Teresa finds a new neurologist. (The world has plenty of neurologists, but those specializing in sleep disorders are rare.) It appears they miswrote a prescription. They're being good about rectifying it, and yes, meanwhile the solution is to take twice as many tablets.

I feel dumb myself for not having noticed earlier! In my defense, I should point out that I generally get Teresa her morning meds before I've had my first cup of coffee.

#12 ::: Kate Nepveu ::: (view all by) ::: February 11, 2005, 03:16 PM:

I have never heard of the slow loris before. Cute as their faces are, I'm sorry to hear that you've been feeling like one. I hope getting back on the right dosage helps.

#13 ::: Nabil ::: (view all by) ::: February 11, 2005, 03:16 PM:

I'm simultaneously sorry to hear how bad things have become and glad to know that you've figured out what was causing it. So much involving brain chemistry is just casting around in the dark. It's a relief when we find solutions that seem to actually work.

I hope you have a speedy return to "normalcy".

#14 ::: Ben ::: (view all by) ::: February 11, 2005, 03:18 PM:

narcolepsy, that's when a person falls asleep just out of the blue, right?

I don't have narcolepsy, but, having had OCD since for as long as I can remember, I can understand how argivating something like that must be.

I've always been curious, but does your narcolepsy allow you to drive a car?

#15 ::: Xopher ::: (view all by) ::: February 11, 2005, 03:20 PM:

Lovely. Jerks!

The slow loris is quick at catching prey, they say...I wonder if it kills by disemvowelment? :-)

#16 ::: Ulrika ::: (view all by) ::: February 11, 2005, 03:20 PM:

I share Lucy's relief that the problem is diagnosed and (presumably) fixable. Praise be to Allah for the restorative power of modern pharmacology. The state of mind you describe reminds me of what happens to me on THC, which is why it's not a good social drug for me. But I can just choose not to ingest THC. To have one's native brain chemistry produce that effect unbidden...brrrr. So I am very very glad for you that there are remedial steps you can take. I hope they help quickly.

#17 ::: Beth ::: (view all by) ::: February 11, 2005, 03:27 PM:

I'm glad to hear the pharmacy will fix the prescription, but oh what an awful state!

Thinking strong double-plus good wishes that things get better soon.

#18 ::: julia ::: (view all by) ::: February 11, 2005, 03:28 PM:

dammit.

I'm glad you've found the proximate trigger of all this, anyway, but I hope you find a good new neurologist soon.

It's infuriating and scary when the brain doesn't behave.

#19 ::: Jena Snyder ::: (view all by) ::: February 11, 2005, 03:30 PM:

I come from a pharmacy background, and your comment that the two dosages were both white pills set off a warning bell for me. Most companies produce different dosages of a medication in different colors so there is less chance of a mix-up. A quick Google says the Cylert dosages are all different colors (18.75 mg pills are white, but 37.5 mg should be orange). Something's amiss at your pharmacy, either in the dispensing, the labeling, or the lack of patient instruction. I would've been canned on the spot if I'd made one of those mistakes. Give 'em hell, Loris.

#20 ::: Will "scifantasy" Frank ::: (view all by) ::: February 11, 2005, 03:30 PM:

Oh, wonderful.

Though I have to admit, your description of the thought process and the "automaton" comment has me envisioning a deterministic finite automaton representing the brain states of a slow loris (or a tired Teresa, as it were). This makes me wonder if Alan Turing may have been on to something...

#21 ::: Michael Weholt ::: (view all by) ::: February 11, 2005, 03:35 PM:

Good lord. What next?

Actually, I was starting to panic a bit as I read deeper into your post. My mind is oriented in a particular general direction lately (which is to say I'm mostly... "News? Well, it has to be really bad if it's news") and so I was getting quite a head of scaredy-steam worked up there for a minute. I was almost relieved to get to the part about the problem being the inadvertently reduced dosage, though I can obviously see why you would be pissed at the trouble the mishap caused you, and the time it wasted.

If it's any consolation, when I saw you the other night you'd obviously outwardly concealed whatever inward struggles you were having. Well... I did sort of wonder about that half-hour pause between "Nice to..." and "...see you again", but I just thought you were being especially sincere. No, just kidding. Seriously, just to let you know, you seemed, at least outwardly, to be keeping it on the highway pretty well. I suppose this is a skill one develops over the years.

#22 ::: Faren Miller ::: (view all by) ::: February 11, 2005, 03:37 PM:

More best wishes that you'll be up to speed again soon! At least we live in an age where they *have* pills that help. (Without mine, a quick-freeze kind of epilepsy would make life a disaster). If only the pharmacies could be foolproof!

#23 ::: John M. Ford ::: (view all by) ::: February 11, 2005, 03:41 PM:

Here's to your loris's return to agility.

#24 ::: liz ::: (view all by) ::: February 11, 2005, 03:42 PM:

Teresa, I admire your control. I would be apoplectic, down at the pharmacy DEMANDING an explanation. This would not improve service, I expect.

I have learned many helpful things through the comments on this, so I will share what I have learned.

I learned this lesson when my dad was on a complex regimen, and his mental affliction was such that he couldn't follow it unassisted. (Drugs from the oncologist, the cardiologist, the orthopedic surgeon, the internist...)

I do it now as a matter of course, for me and for my daughter. Fortunately for us, it is just suppliments.

If any of you are caring for (or are worried about) aging parents this may be a useful hint, too. Doctor #1 may be prescribing the same thing as Doctor #2, or the like

I have with me a spread sheet of:

Names (proprietary and generic) of all meds
Condition for which the drug is prescribed (be specific)
Prescribing Doctor
Start date
Stop date (expected duration)
At - one - time dose
Number of doses per day (with times if necessary)
Total daily dosage
Any constraints (take with food, take without food, avoid cheese, etc.)

When I pick up a medication I match the name and dosage to the relevant line on the spreadsheet WITH the pharmacist.

Also, my insurance coverage is such that it requires generic where available. This may or may not be effective (I found out for example that one of the generics gives me heartburn while the proprietary formulation does not).

#25 ::: J.K.Richard ::: (view all by) ::: February 11, 2005, 03:43 PM:

I have had insomnia now for four years. Although certainly the opposite of your condition, the mental state it puts me into at times especially when approaching the thirty hour mark is similar: staving off depression, navigation and math (truely anything requiring frontal lobe activity). Alhtough my episodes are cyclic and the severity of the depression varies directly with amount of depravation; I can definitely empathize on some level.
They Navy docs tried early on to treat with cycling melatonin and seratonin doses; of which neither did anything to affect the condition. I have a good friend who is a neurophysicist and expierimental psychologist who presented me with the theory that insomniacs and narcoleptics often enter lower brain wave patterns/frequencies than most people. It's a known fact that drivers often enter beta-wave patterns (aka 'road stare'), and people reading or listening to relaxing music enter beta as well as theta wave patterns. The difference between insomniacs and narcoleptics according to this doctor is weather or not the body leads or lags. In my case my body's response lags behind my neural kinetics (apparently by a very large amount); in your case the body enters a relaxed state leading the brain into sleeping patterns.
His recommendation to me was to listen to music that would induce theta patterns (slow, ambient, intoxicating music) and drive heart rate down, allowing bio- and neural rhythms to match. Maybe try music during the day that increases heart rate (latin beats, somba, raggae etc...) and in your case possibly leading the brain into alpha induced states.
I have also been requested for a sleep study (although I find it odd that they want to study the sleeping patterns of someone who doesn't sleep) for possible sleep apnea and somnambulism. An advanced sleep study is something that if you haven't already checked into; or if it's been a while since your last exam; you may want to request from your new neurologist.
Sorry for the lengthy comment, hopefully at least you've gleaned a few cool medical terms.
-=Jeff=-

#26 ::: Christopher Davis ::: (view all by) ::: February 11, 2005, 03:47 PM:

Ah, medication.

My health plan encourages me in many ways (lower copays, exhortations, etc) to use their mail-order pharmacy service.

Instead, I stalwartly and resolutely continue to walk to the independent, family-owned-and-run apothecary (yes, they're so old-fashioned they call themselves an "apothecary") to get my prescriptions filled.

They know me. They recognize me when I walk in, ask how I'm doing, fill my prescriptions, and when I change meds or dosages, they take the time to talk to me about the change (which has happened several times, since I've gone through several for my various ills).

They also specifically told me on one occasion that I should know that the pill shape and color for a prescription had changed; it had gone generic or changed generic suppliers, so the dosage was the same but it looked different, and they wanted to reassure me.

I hope (and expect, though I've luckily never had to test it) that they'd catch any accidental dosage change and at the very least ask me if the doctor had mentioned changing it.

Have I mentioned how much I love them?

#27 ::: Peter Hentges ::: (view all by) ::: February 11, 2005, 03:48 PM:

Man, that sucks. Lucky Patrick noticed! Do you have a sheet, such as my Ericka does, that lists your prescriptions and their dosages? When we set up her (many) medications for the month, it's the only thing that prevents us from having mishaps like yours. Here's hoping you feel closer to fine very soon.

#28 ::: PinkDreamPoppies ::: (view all by) ::: February 11, 2005, 03:50 PM:

Teresa: I guess I admire your patience because I've been in the same situation before (not with my meds; others') and am still fuming about it years after the fact. Once again, my admiration for you increases.

#29 ::: Katrina Gerhard ::: (view all by) ::: February 11, 2005, 03:52 PM:

It may be justifiable anger, but I won't trade the rest of my world for it.

Wise advice for a wide variety of situations. I may scrawl that one on the bathroom mirror, as a reminder when I take my own daily dosages.

#30 ::: Mary Dell ::: (view all by) ::: February 11, 2005, 03:53 PM:

Wow, you have my sympathies. A cruel irony when the meds you need to notice details like relative bittiness are the meds you're not getting enough of. On the bright side, good husband you've got there. I hope you'll be doing better shortly. (That sentence originally started with "hopefully" but I fixed it so as not to add to your troubles. [She said, using "so as not to" in a sentence. Agh, hopeless! I'm reading Bryson's Dictionary of Troublesome Words and it's making me as self-conscious as an adolescent])

Seems like an appropriate time to share a slogan that's popular in my family: "The family that's ill together takes pills together!" (said as a toast when downing your drugs at the dinner table)

Feel better.

#31 ::: Dan Blum ::: (view all by) ::: February 11, 2005, 03:57 PM:
I come from a pharmacy background, and your comment that the two dosages were both white pills set off a warning bell for me. Most companies produce different dosages of a medication in different colors so there is less chance of a mix-up. A quick Google says the Cylert dosages are all different colors (18.75 mg pills are white, but 37.5 mg should be orange). Something's amiss at your pharmacy, either in the dispensing, the labeling, or the lack of patient instruction. I would've been canned on the spot if I'd made one of those mistakes. Give 'em hell, Loris.

Since Patrick says the prescription was writen incorrectly, I'm not sure you can blame the pharmacy for anything more than not noticing that the dosage had changed and asking about it - which would definitely be a good thing to do, but I think it would be easy to miss.

As far as the pill color goes, are the generics color-coded the same way? It wasn't clear to me if Teresa was taking generic or branded Cylert.

#32 ::: Lisa Hertel ::: (view all by) ::: February 11, 2005, 04:06 PM:

Patrick, it wasn't all the physician's fault. A *good* pharmacist will note that the dosage had changed and mention it. At least, *I* would have said something -- especially if it were a long-term dose. Prospective reviews (checking the profile) is something of a standard in pharmacy practice nowadays. However, we pharmacists are only human -- and often rather stressed humans, at that.

Jena, as for the pills being varied in color -- that's true for the brand name drug. However, I believe Cylert has a generic available.

Teresa, good luck in finding an expert in narcolepsy. I hope you'll be feeling up to coming to Boskone.

#33 ::: Vera Nazarian ::: (view all by) ::: February 11, 2005, 04:06 PM:

Teresa,

All I can say is, thank goodness this was a dosage issue! *worried*

#34 ::: Steve Taylor ::: (view all by) ::: February 11, 2005, 04:18 PM:

Oh, that's horrible - but my first reaction to reading your post is pleasure. There was a *reason* - and it can all be made to stop, just by shifting your dosage, and you'll be up to speed soon.

Hope all is better soon.

#35 ::: Patrick Nielsen Hayden ::: (view all by) ::: February 11, 2005, 04:18 PM:

Jena, yes, I googled up those images, too, and while I can confirm that we used to get 37.5mg Cylerts that were orange, more recently what we've been dispensed has been white.

Yes, theoretically, the pharmacy should have caught the change, but for reasons unrelated to the change of neurologist, we've recently changed pharmacies as well.

Alas, we won't be at Boskone, but have a good time for us. We'll be back next year.

#36 ::: PiscusFiche ::: (view all by) ::: February 11, 2005, 04:18 PM:

My little brothers were on Cylert, prescribed early 90s for their ADD/HD, and it seemed like it was really touch and go as far as their prescriptions went. If it was the right dosage, all was wine and roses (or 7-up and dandelions, considering our household) but if NOT.....Holy Mother of God! (After several years of continual medication, they seemed to level off to a point where they could function without it--or maybe that was the end of puberty helping them along.)

Sorry to hear about your afflictions, and here's hoping you'll be back up to speed. (No puns intended.)

#37 ::: Janice Gelb ::: (view all by) ::: February 11, 2005, 04:29 PM:

I can see where printable curse words just wouldn't do, but am exceedingly glad that the cause was found and can be remedied. Like Michael W, I was expecting a different denouement to this story and am very glad to have found a relatively happy ending. Hang in there.

#38 ::: Madeleine Robins ::: (view all by) ::: February 11, 2005, 04:29 PM:

Oh, hell, Teresa. I'm sorry you've been chemically unwound, and delighted the process is being reversed. I know how much you hate this. Courage.

#39 ::: Anna Feruglio Dal Dan ::: (view all by) ::: February 11, 2005, 04:33 PM:

I'm really releived that you caught it, and a bit worried at your being neurologist-less. Hope you find a good one soon (keeps fingers crossed).

#40 ::: Greg van Eekhout ::: (view all by) ::: February 11, 2005, 04:36 PM:

Like many here, I'm very sorry you've had to go through this, and I'm happy you discovered a way to lessen the problem. I hope you feel better very soon.

#41 ::: Suzanne M ::: (view all by) ::: February 11, 2005, 04:44 PM:

It's just horrible that this happened, but thanks to whatever Powers there Be that it's a medication problem and not something far worse. Very glad indeed that Patrick caught that.

Good luck finding a new neurologist. Hope everything clears up soon.

#42 ::: Kevin J. Maroney ::: (view all by) ::: February 11, 2005, 04:53 PM:

Have you folks read the Washington Monthly article on the VA Hospital system? The surprising title is "The Best Care Anywhere", and it's about how over the last fifteen years the VA has transformed itself from a bunch of inefficient, low-quality health care components into a supercharged, low-cost, best-in-America-and-probably-the-world health care system.

One of the many innovations the VA has is an automated pharmacy which uses bar code scanners and lots of computerized record keeping to ensure that patients don't go through what you just went through.

Of course, we all know that the free market is the best possible system except of course when it isn't.

#43 ::: Xopher ::: (view all by) ::: February 11, 2005, 05:16 PM:

Hmm, I didn't know there was a generic for Cylert. I have to ask my pharmacy and my neurologist about that...bet it's cheaper.

I too insist on going to the pharmacy I've been going to for 22 years. Mail-order is fine for stuff you can get a far-in-advance supply of, but they won't let you preorder Cylert (guess why). So if the mail is delayed...well, I could lose my job. And the Lexapro? In the dead of winter, that could be fatal.

#44 ::: Charlie Stross ::: (view all by) ::: February 11, 2005, 05:31 PM:

Back when I was training as a pharmacist in the mid-80's, we figured that 1 in 7 beds in the NHS hospital system was occupied by someone suffering an iatrogenic (drug-induced -- and I mean prescribed drug-induced) condition. Errors creep in everywhere along the chain; I'd speculate that part of the problem is that the diagnostic/prescriptive/dispensary split draws the line between specialities in the wrong place, and we'd be better off with prescriber-dispenser as a combined profession and keep diagnositicians from getting their fingers in the medicine jars.

(Caveat: I haven't been a pharmacist for 16 years, now.)

#45 ::: Mac ::: (view all by) ::: February 11, 2005, 06:08 PM:

tnh-
Ah, if only my brain worked half as beautifully as yours, even with the medication snafu.

Best wishes.

#46 ::: Graydon ::: (view all by) ::: February 11, 2005, 06:38 PM:

Teresa --

I was _yugh_ing at the prospect of getting the wrong perscription drugs, rather than the stuff I take, which is in harmless gel capsules. I will nonetheless very heavily disrecommend biting down on Swiss compressed meadow-plants multi-vitamins of a distracted morning. The hay in Mordor probably tastes like that, and makes the cows cruel.

#47 ::: Andrew Gray ::: (view all by) ::: February 11, 2005, 06:42 PM:

(With regards to the pharmacy-error thing, there was a quite surprising paper on this about a month ago: "A Spike in Fatal Medication Errors at the Beginning of Each Month" [news story; link to article]. It noted a 20-30% increase in fatal errors (and presumably a corresponding one in non-fatal errors, although they didn't go into that) around the beginning of the calendar month, and posited that this was due to increased pharmacy workload. It's certainly a sobering thought.)

I'm glad the error was caught, and I hope you're back to your normal state soon.

#48 ::: Mary Kay ::: (view all by) ::: February 11, 2005, 06:45 PM:

Christopher & Xopher: Actually the pharmacists at the chain drugstore just down the street have gotten to know me pretty well. Our insurance will only let us get 30 days of a medication at a time. Since I have 3 (used to have 4) meds I take on a daily basis for the rest of my life and Jordin has 1 they see me at least 2/month. I still take the Prilosec but it's OTC now at least.

Teresa: I'm sorry to hear about it -- I hope things are better soon. As one with deficient brain chemistry myself I can really feel for you. Did you know Lydy is having med problems too? She's just written about it in her LJ

MKK

#49 ::: Marilee ::: (view all by) ::: February 11, 2005, 07:05 PM:

Yikes! I'm glad to hear it's as easily fixed as the right meds, although that's still pretty awful.

The worst-tasting med I've ever had was the liquid cyclosporine, before they put it in capsules, and the directions said to mix it with orange juice or chocolate milk to hide the taste and that didn't work. What worked better for me was to empty the syringe into my mouth and *then* drink orange juice.

I had a discussion with the hand surgeon Tuesday about meds (she's going to take out the two gout tophi that are on the tendon in my right wrist and hurt -- the xrays show no arthritis in that wrist, which is good). I always print out a sheet of my "Emergency Information" when I see a doctor so they have the most recent med regimen (also contains diagnoses, address & phone, insurance info, allergies -- I've been thinking about putting diet requirements in, too) and I handed her the sheet (blue for the doctors, pink for the copies I keep in the wallet/car/drawer/with meds) and she said "I can just print out the phamarcy list."

I explained that she can't. I have several meds that are prescribed in a dose that I can double or halve as needed, so the pharmacy list doesn't actually reflect how I take meds. That's one of the reasons I made up the "Emergency Information" sheets.

#50 ::: Kip Manley ::: (view all by) ::: February 11, 2005, 07:48 PM:

It may be justifiable anger, but I won’t trade the rest of my world for it.

I'd like to think this will rank near the top of the thick sheaf of quotes attributed to you in the next edition of Barlett's. —Be well; take care; vanquish the loris, adorable though it may be. (One feels slightly churlish that one is thinking to oneself: Aha! Perhaps, then, more and more frequent posts are in the offing! Huzzah!)

#51 ::: Larry Brennan ::: (view all by) ::: February 11, 2005, 07:51 PM:

Well, add mine to the many voices wishing you a rapid return to normality. Pharmaceuticals are wondrous and scary things, and our medical system seems to recognize them as neither.

My cousin and I did the liz inventory approach for my grandmother a few years ago - not that she had any problems managing her meds. The issues she had were threefold - to save money, she had prescriptions filled by pharmacies all over town based on price, this one at Publix, that one at Walgreen's, another at K-mart, etc, so that no pharmacist had a 360-degree view. Plus she had several doctors writing Rxs for her. Amazingly, there were no interactions since she was diligent about keeping the docs informed.

The final and real problem was that she stopped some of her meds because she couldn't afford them anymore and was too proud to ask for help. After a tearful phone call, she was on the receiving end of several hundred dollars a month just for her meds.

I hope nobody reading this winds up with the kind of error that TNH had, or in my grandmother's situation. Unfortunately, the odds are that this sort of thing will probably happen to far too many of us.

#52 ::: Leslie ::: (view all by) ::: February 11, 2005, 08:12 PM:

Teresa, I'm so sorry you've been suffering, but thankful that a remedy is at hand. Fie upon incorrect dosages, and may you soon be as speedy as a loris that's finally reached its prey.

#53 ::: Kate Nepveu ::: (view all by) ::: February 11, 2005, 08:38 PM:

Cyclosporine! Smells like skunk, or at least it did when my dad was on it.

I don't know if he ever needed to take it in liquid form, though. Ugh.

#54 ::: Randolph Fritz ::: (view all by) ::: February 11, 2005, 09:29 PM:

My sympathies. I am glad to hear, however, that the problem was a simple medication error.

As someone now taking care of a sick parent I am struck by how many of the problems of healthcare are failures of attention. Things get forgotten, paperwork gets lost, and someone gets very sick or worse.

#55 ::: John Farrell ::: (view all by) ::: February 11, 2005, 09:42 PM:

Teresa,
Please get well, soon! I'm so sorry that happened to you...I couldn't help noticing it seemed you were posting less over the past many weeks.


God Bless.

#56 ::: Robert L ::: (view all by) ::: February 11, 2005, 09:50 PM:

Tha man bin steppin on the produck?

Pop a cap in they ass!

Oh, sorry...I was having a flashback...

#57 ::: TomB ::: (view all by) ::: February 11, 2005, 10:10 PM:

Four and a half months on decaf? Shudder.

I'm so glad that Patrick caught it. As we get older, our support systems become ever more important.

#58 ::: CHip ::: (view all by) ::: February 11, 2005, 11:46 PM:

Thanks for putting life in perspective; I was grumbling about the tastes of the various salts I had to take to set up for a colonoscopy (not to mention the Gatorade they were washed down with -- \how/ does that that vile excretion sell??), but that sounds like nothing compared to what several people on this thread have been through.

My father-in-law is still standing in occasionally as a pharmacist; picking up one or two days a week is doable even at 70, especially after half a lifetime fixing screwed-up medical administrations. But I have heard lots of full-time pharmacists speak about the pressure of the job -- it sounds like the chains are going the Wal-Mart route, which is begging for trouble.

I hope you recover enough to make ConDFW; we'll miss you at Boskone, but other parts of the country should have a treat occasionally.

#59 ::: Greg London ::: (view all by) ::: February 11, 2005, 11:51 PM:

Patrick wrote:
> I feel dumb myself for not having noticed
> earlier! In my defense,

I'm not sure if anyone else picked up on this language, but you have no right to beat yourself up over someone else's mistake. In fact, kudos for catching their screwup.

Healthy vibes to you both.

#60 ::: David Dyer-Bennet ::: (view all by) ::: February 12, 2005, 12:28 AM:

As medical stories that begin with a chronic condition worsening go...I've seen worse! Certainly would be infuriating to realize that this big recent chunk of your life was lost to *human error*, but at least it's clear what to do next that will very probably make things better!

#61 ::: Nancy Hanger ::: (view all by) ::: February 12, 2005, 12:31 AM:

My best to you, T. And you, Patrick. We won't be at Boskone, either, even though it's just down the road from us.

Provigil isn't doing what it should do, as I'm on painkillers until my wrist is fixed via surgery next month -- no Provigilly goodness makes for a slow loris. Yes. Perfect description. Elric keeps looking terribly concerned. I hate making people concerned.

Thinking of you. Slow to slow. :-)

#62 ::: Brenda Kalt ::: (view all by) ::: February 12, 2005, 02:10 AM:

Re: Liz "... requires generic where available ... one of the generics gives me heartburn while the proprietary formulation does not." Joe & Teresa Graydon's column, _The People's Pharmacy_, mentioned that the FDA was now reconsidering its long-standing proclamation that generics are identical to the brand names.

Re: mail-order pharmacies--I've been taking the same meds for 4-5 years now. I order 3 months at a time. Twice when I waited until the very last moment to order refills, I got a nice letter from the pharmacy saying that they'd noticed I hadn't refilled and that it was important to keep taking my meds, unless directed otherwise by a physician. In fine print was a notice that the letter was provided by the *drug's manufacturer.* Oy.

Teresa, may you have immediate success in getting up to speed. Good luck!

(While I'm here--how's the hamster?)

#63 ::: Jonathan Vos Post ::: (view all by) ::: February 12, 2005, 02:58 AM:

Teresa:

I was weeping a few minutes ago from a combination of empathy for your woes, and the deaths of Arthur Miller and Jack Chalker.

My father's father died from what seemed medical malpractice to me, as did my favorite aunt. So take my iatrogenic paranoia with a grain of salt. Just as I alerted your readers to the warnings on Serzone (Nefazodone) for clinical depression, dare I mention:

June 18, 1999 - Abbott Laboratories revises warning for pemoline (Cylert) to provide updated recommendations for liver function monitoring
Sept. 22, 1999 - Pemoline has been withdrawn in Canada due to liver complications

http://www.mentalhealth.com/drug/p30-c03.html

You almost surely know this already, but it never hurts to research what the Medical Establishment giveth, for so also do they taketh away.

Patrick:

Your discovery was a wonderful gift to your wife. Please do not fret that it took a while.

And this may be a couple of days too early, but have a romantic Valentine's Day!

#64 ::: jane ::: (view all by) ::: February 12, 2005, 03:04 AM:

Good God, woman, show me the way to your doctor and pharmacy and I'll sort them out. They have probably not had a Jewish grandmother in full swing in a while!

Seriously, the symptoms alone would have killed off a lesser creature. And you in slow loris mode can still beat most of us in the fast brain department. But thanks to Patrick for catching this horror and a hug from Scotland to you both.

Sorry I won't see you at Boskone. I'll be at BEA. But that's not till June.

Jane

#65 ::: Lois Aleta Fundis ::: (view all by) ::: February 12, 2005, 04:34 AM:

Someone on a mailing list I subscribe to uses "slow loris" as a screen name.

Now that the cause of your distress has been discovered, I hope you will soon become a quick loris once again.

Meanwhile, several emphatically unrepeatable words have been muttered in your behalf.

#66 ::: Harry Connolly ::: (view all by) ::: February 12, 2005, 05:51 AM:

"It may be justifiable anger, but I won’t trade the rest of my world for it."

There's a big, beautiful novel in that sentence. I wish I had the chops to write it.

I'm sorry for your troubles, and glad that the problem has been fixed. Good luck.

#67 ::: Mris ::: (view all by) ::: February 12, 2005, 07:58 AM:

As so many other people have said, my sympathies, and I'm glad it's fixable!

#68 ::: Kate Nepveu ::: (view all by) ::: February 12, 2005, 08:59 AM:

CHip, re: Gatorade, when you've actually been sweating it doesn't taste bad, as long as it's cold--warm Gatorade, I am reliably told, tastes like sweat.

(In Wen Spencer's Ukiah Oregon series, the title character can take considerably more physical injury than a normal person. One of the ways he tells his partner how badly he's been injured is how much warm Gatorade he's drunk and how good it tasted, which I thought was a nice touch.)

#69 ::: Jim Kiley ::: (view all by) ::: February 12, 2005, 10:25 AM:

Holy cats, Teresa. Best wishes, and hopefully soon you'll have the speed necessary to throttle those responsible.

#70 ::: Michael Pullmann ::: (view all by) ::: February 12, 2005, 10:26 AM:

Ah, the miracle of modern medicine.

I applaud your anger management skills. I have my own daily dose of normalizers to take, and if the health "care" system ever screwed up with me the way they did with you, I'd be punching through walls and chewing on iron.

#71 ::: Elric ::: (view all by) ::: February 12, 2005, 11:12 AM:

Good grief. Please add my voice to the chorus of good wishes. We're all looking forward to you showing us what a fast loris is like.

(Lorises! Or are we Lorii? But we are! With caffeine! And red pencils! We like red pencils! And manuscript pages! Marks! We can make marks! Germany can't even complain now, because they use Euros, while we make lots and lots of marks!)

Dang. I'm not allowed caffeine anymore.

#72 ::: sundre ::: (view all by) ::: February 12, 2005, 11:22 AM:

CHip: re those salts, surely there was something less vile to mix them with. When my brother had his colonoscopy, they suggested Tang (which doesn't sound much better to me).
Unfortunately, they didn't inform him of this option until afterwards, and he thought he had to drink the solution straight.

#73 ::: Rivka ::: (view all by) ::: February 12, 2005, 11:27 AM:

Oh my gosh. How absolutely terrifying, to feel yourself on that downward slide and not know what was causing it, or whether it would be fixable. I'm so glad that it's something correctible, and I hope that you're back to your normal self quickly.

#74 ::: Tom Whitmore ::: (view all by) ::: February 12, 2005, 11:36 AM:

To quote a filk of Don Simpson's:

He promised to buy me a second hand Morris
A matched set of H-bombs that go off in chorus
A musically talented agile slow loris
And other delights that are rare

Oh dear, where can the matter be
When it's converted to energy
There is a slight loss of parity
Johnny's too long at the fair.

Thinking of you being in slow loris mode, T, could only be agile.

Hugs and best recovery wishes.

#75 ::: Randolph Fritz ::: (view all by) ::: February 12, 2005, 11:57 AM:

I think "quick loris" is an oxymoron, sort of like "energetic sloth". Please do give up an update when you can.

#76 ::: jennie ::: (view all by) ::: February 12, 2005, 11:59 AM:

Teresa,

Best wishes to you for a smooth road to better health. I too am glad that the fix is relatively simple, and sorry to hear that you've been trapped on the broken path of illness lately.

I'm going to get out of that metaphor before it snarls around my fingers and causes me to commit atrocity.

If I knew you and Patrick better I'd be sending hugs to both of you. If I had a spare useful neurologist handy, I'd send it to you.

Elric,
(Lorises! Or are we Lorii? But we are! With caffeine! And red pencils! We like red pencils! And manuscript pages! Marks! We can make marks! Germany can't even complain now, because they use Euros, while we make lots and lots of marks!)

Caused a near-fatal convergence of nose-blown coffee with annual-report proofs. I thank you.

#77 ::: Dan Blum ::: (view all by) ::: February 12, 2005, 12:01 PM:
CHip: re those salts, surely there was something less vile to mix them with. When my brother had his colonoscopy, they suggested Tang (which doesn't sound much better to me).

Part of the reason why Gatorade is recommended is for the potassium and such that it contains, or so I understand - prior to a colonoscopy you are not allowed to have anything except clear (non-dairy) liquids for 24 hours.

When I had my most recent colonoscopy, I bought orange-flavored Gatorade. I wouldn't say it was good, but it was considerably more palatable than the standard stuff.

#78 ::: Paul ::: (view all by) ::: February 12, 2005, 12:34 PM:

Teresa - thought you'd been very quiet lately! Glad to hear the problem's been found and it's such a simple solution, anyway. Slow loris's are cute, but I can see that feeling like one wouldn't be a good thing.

Mary Dell - Bryson's book had that effect on me as well. Interesting and probably useful, but it does make you (well, me) feel very inferior whenever I write *anything* after I've read it...

#79 ::: Kimberly ::: (view all by) ::: February 12, 2005, 12:42 PM:

[asthma-girl delurks, tucking cosmic inhaler into pocket...]

...and reads, and nods, and gasps, and nods some more, and glares at the pile of tissues and meds on the tv tray next to the chair.

I've been living on the margins for most of my 34 years. My asthma was entirely uncontrolled--daily meds were only keeping me alive, usually--until I was 29, and obtained the right combination of lifestyle, medications, and brilliant doctor. Now, it's sort of controlled, but the control is tenuous and the "free" lifestyle is a fragile illusion.

My husband read this post, and nodded, and gasped, and nodded, and got angry for you too. And then we remembered when the mail-order pharmacy had a problem but failed to leave messages at the proper phone number, and when a manufacturer discontinued a key medication, and when a relative unwittingly made us reservations at a bed and breakfast that was home to a beautiful but lethal free-roaming kitty...

Today, my son has the flu. I am precariously balancing between avoiding him entirely and nursing him like a good mommy. But the last time I got the flu (pre-brilliant doc) I was in the hospital for a week.

Anyway, thank you for sharing this. I've never heard anyone so eloquently express what it's like to live with something like this. And asthma is different, but with substituted warning signs and symptoms and med names, that post could be describing me.

Teresa, I hope your climb back up to stable is not too exhausting.

Kimberly

#80 ::: Nancy ::: (view all by) ::: February 12, 2005, 03:18 PM:

Teresa,

If you like, I will be angry for you, since I am no longer spending my energy on sinusitis. Get better soon.

Elric,

If loris is Latin, it looks like a third declension noun, so if it is masculine or feminine, the plural will be lores, and if neuter, lora.

#81 ::: Therese Norén ::: (view all by) ::: February 12, 2005, 04:53 PM:

Like so many others, I wish you a quick recovery.

#82 ::: Ray Radlein ::: (view all by) ::: February 12, 2005, 05:15 PM:
CHip, re: Gatorade, when you've actually been sweating it doesn't taste bad, as long as it's cold--warm Gatorade, I am reliably told, tastes like sweat.

Ah, you are talking about the Olden Times, here, when there was but one Gatorade, and it tasted like, well, something, although no one could ever quite figure out what. These days, there are so many different flavors of Gatorade available that talking about "the taste of Gatorade" is about as sensible as talking about "the taste of soda" (as though Mountain Dew and Diet Dr. Pepper and 7Up and Hires Root Beer and Blenheim's Ginger Ale all had some significant commonality of taste).

One or two of those myriad Gatorade flavors are actually palatable, in fact.

#83 ::: Metal Fatigue ::: (view all by) ::: February 12, 2005, 05:49 PM:

about as sensible as talking about "the taste of soda"

To this Midwesterner, that brought to mind an image of licking up a spoonful of sodium bicarbonate. Ugh.

(What's really funny is that, thanks to having gone to school on the East Coast, I say "soda," not "pop." I just don't expect other people to say it too.)

#84 ::: John M. Ford ::: (view all by) ::: February 12, 2005, 06:05 PM:

...Hires Root Beer...

What we need these days is a stable, fast, anti-aliased root beer with dynamic shading. Not that you can let just anybody have root.

#85 ::: Ray Radlein ::: (view all by) ::: February 12, 2005, 06:26 PM:

The truly horrible thing is that I carefully considered the "soda/pop/cola" angle, as well as the "high-res" angle, before wildly failing my saving throw versus fuckit.

Once upon a time, I would have had sufficient mental stamina to stick with the first long enough to come up with "soft drinks" instead, and the second to come up with, say, "A&W" or "Barq's." Of course, once upon a time, that "long enough" would have been a lot less long than it is now.

#86 ::: Marilee ::: (view all by) ::: February 12, 2005, 07:04 PM:

CHip, I just finished a 32oz bottle of Gatorade Frost Glacier Freeze. I have to have 32oz of Gatorade a day. So the bad news is I get a colonoscopy this year (50 next month) and the good news is I already have a fridge full of the required liquid.

#87 ::: Kate Nepveu ::: (view all by) ::: February 12, 2005, 07:42 PM:

Ray, Chad tells me (from the kitchen where he is cooking) that even the flavors he likes cold (Fruit Punch and Grape, if anyone cares) are pretty gross when warm.

I suppose this calls for an experiment, but I ain't volunteering.

#88 ::: Robert Glaub ::: (view all by) ::: February 12, 2005, 07:45 PM:

Teresa -- that really sucks. I could introduce the malefactors to my friends Boris and Guido...

I've just been diagnosed with minor sleep apnea. The cure for that is losing weight. Easier said than done, I know, but it's an incentive. There are other problems, though, and I'll be at Johns Hopkins getting neurological tests on an out-patient basis. They think it may be from when I was in the Balkans...

#89 ::: Ray Radlein ::: (view all by) ::: February 12, 2005, 09:33 PM:
Ray, Chad tells me (from the kitchen where he is cooking) that even the flavors he likes cold (Fruit Punch and Grape, if anyone cares) are pretty gross when warm.

The two flavors I prefer are a lemonade sort of flavor (I think they call it "Ice") and a raspberry one. The lemonade one tastes to me pretty much like any powdered lemonade mix on the market these days, and is reasonably drinkable warm. If I recall correctly, when warm, the raspberry one tastes... red.

#90 ::: Bruce Arthurs ::: (view all by) ::: February 12, 2005, 11:42 PM:

"I have trouble staving off depression."

And that, in turn, can lead to further problems of the "slow loris" you describe, if anti-depressant medications aren't balanced properly. A friend of ours spent years as a "Prozac Zombie" in the wake of major problems with depression; formerly quick-witted, always ready with a snappy response in conversations, but on the meds talking with him was like carrying on a radio conversation with someone several Lunar distances away -- a gap of several seconds before each statement. (He's doing better nowadays, but still not like the person he was.)

And I've been on anti-depressants myself several times. Icky. I feel "better" (and definitely more productive) going around moderately dysthymic than I do not feeling on the anti-depressants.

Sorry, mild rant there. But I think anti-depressants are WAY overprescribed in the USA. Pet peeve.

#91 ::: Julie L. ::: (view all by) ::: February 13, 2005, 12:29 AM:

A third-declension neuter loris could also be an i-stem, which would make for plural loria. However, a quick poke at the actual nomenclature reveals that while the slender loris is Loris tardigradus (and thus grammatically masculine), the slow loris is instead Nycticebus coucang (unless it's the pygmy slow loris, in which case it's N. pygmaeus.

I've probably had latent narcolepsy for years, which caused me to fall asleep in all manner of classes even *while* drinking Jolt Cola (through a straw, and I'd only wake up if my head nodded forward hard enough to cut my palate). I've finally had Provigil added to my antidepressants, which for the past few months has made for a weird time-expansion experience now that I can stay awake for more than a few hours a day between 10-12 hr. naps. So yeah, definite sympathies/commiseration/etc. on submedication-caused dysfunctionality.

#92 ::: mythago ::: (view all by) ::: February 13, 2005, 02:20 AM:

You probably won't want to go to the extent of actually suing for malpractice, but I believe it would be wise for the clinic to know just exactly how serious a fuck-up y'all (rightly) consider this to be. This was a stupid, careless and entirely preventable medical error of the sort that kills thousands of people every year, by the AMA's rather conservative estimates.

Glad for the speedy recovery from lorishood.

#93 ::: John M. Ford ::: (view all by) ::: February 13, 2005, 03:49 AM:

A third-declension neuter loris [...]

No wonder they're so rare.

#94 ::: Stef ::: (view all by) ::: February 13, 2005, 11:09 AM:

I'm glad that the problem is solved, and I'm sorry it took so long to clear up. But I'm mainly here to express utter enjoyment of the phrase "slow loris territory," which I completely relate to due to various health problems of my own, and I suspect I will have many opportunities to steal^H^H^H^H^H pay tribute to it.

#95 ::: Metal Fatigue ::: (view all by) ::: February 13, 2005, 11:38 AM:

Does anyone know whether there's already a band called "Slow Loris"? It's too euphonious to pass up!

#96 ::: Michael Pullmann ::: (view all by) ::: February 13, 2005, 11:44 AM:

www.slowloris.co.uk

Yes, I Googled it.

#97 ::: Metal Fatigue ::: (view all by) ::: February 13, 2005, 11:46 AM:

Nemmind. Google reveals at least one. Also a T-shirt vendor, though oddly enough, none of her shirts feature pictures of prosimians.

...And, dammit, "Slender Loris" is taken as well, though at least that band is defunct.

#98 ::: Michael Turyn ::: (view all by) ::: February 13, 2005, 12:10 PM:

A rule-of-thumb that might make more sense for those who went to college from the late 'Sixties and on:

Treat any drug from the drugstore as if you had got it from a well-meaning but not necessarily competent fellow-student.

"Legal", "illegal", "prescribed", "O.t.C." and the like are semantic categories your body's biochemistry will mostly ignore, at least as far as gross immediate effects are concerned---and yes, you probably can trust a sealed packet from Pfizer to be what it claims it is more than a baggy from Trails down the hall, but neither is guarantied to be what you need, or even not bad for you---and while Trails has much less to lose than Pfizer, she also has a lot less insulation than Pfizer....

#99 ::: Michelle ::: (view all by) ::: February 13, 2005, 12:22 PM:

Teresa,

Many wishes for your medication putting you back on track soon.

#100 ::: Christopher Davis ::: (view all by) ::: February 13, 2005, 12:24 PM:

Bruce: Granting the peeve, it's sadly possible for a medication or type of medication to be both over-prescribed (given to folks it won't help or will actually harm, often because they saw commercials for it) and under-prescribed (not getting to the folks who actually need it) at the same time.

Vioxx, for example, is apparently less risky overall than other painkillers for people who are prone to bleeding on the others. But hey, instead of having that small market, let's advertise the heck out of it so people will "ask your doctor about" the medication, and some number of doctors will prescribe it out of ignorance or just to shut up the patient...and we get a situation where it goes from way overprescribed to banned (and therefore underprescribed for the folks who need it) overnight.

(Sorry, that's my rant. Teresa, please tell me if I'm taking this too far afield.)

#101 ::: Bruce Durocher II ::: (view all by) ::: February 13, 2005, 12:25 PM:

I'm sorry you've had this little adventure in medications. After my mom's E. Coli infection (followed by partial kidney failure, liver damage, multiple spinal fractures, and diabetes) she ended up on two thousand dollars of medication a month--and we had to watch like a hawk to make sure side effects were monitored after it was discovered that almost a year of inability to eat more than a cup of food or so at a meal because of nausea was a known side effect of a medication that hadn't been considered. I tend to brood upon this whenever I have get a new medication.

Just to make sure, since the neurologist has left the practice--the clinic is checking your liver function regularly, aren't they? We have a friend who needs Cylert (he has to get up at 4:00 am to take his dose every day), and his doctors are militant about the need to check regularly because of the possible nasty side effects of the drug.

#102 ::: Kathi ::: (view all by) ::: February 13, 2005, 12:49 PM:

It may be justifiable anger, but I won't trade the rest of my world for it.

--Theresa Nielsen Hayden

I try to live this--thanks for such a clear statement of it. Hope doubling the dose gets you back on track much faster than six weeks.

Thanks to Liz et al for sharing the systems that have worked for pill organization and doctor herding (probably similar to cat herding.) I'm going to post the list in my LJ, and will link to this post, if you have no objection.

I must admit that I would make sure that the people who screwed up knew that under other circumstances, they could have cost you your job, and, most importantly, your life. But fuzzy thinking went with my illness--I can't have doctors and other medical personnel dropping the ball.

I am grateful that none of the medical/supplement screw-ups in my past nearly killed me--although I believe one did cost me a pending job. I thought I'd add that if folks take both Rx and supplements, please, FIND A COUNSELOR WHO KNOWS THIS. Herbs and vitamins are NOT benign pick-me-ups. Some of them can ream you out--and at low dosages.

In my case, it's my licensed clinical nutritionist who keeps an eye on me. When others told me that my results were normal (low normal, but normal,) that I had just drawn the bad arthritis card, and that fatigue and failing thought processes were all in my head--he said, no, not true. And kept me going in functioning health until a research study blood test revealed the problem.

Still working on halting/repairing the damage, but at least I'm writing again.

I hope you're still coming to Dallas at the end of the month! My SO and I are pleased that you’re attending. (Also, we're going to Fogo de Chao Friday night. :} He will drive hours for this restaurant. Let me know if it interests you.)

--Kathi Kimbriel

#103 ::: Mary Kay ::: (view all by) ::: February 13, 2005, 01:04 PM:

Bruce: Anything that turns your into a zombie or which blocks you from feeling at all is a drug you don't need to be taking. However please try to realize that because those drugs have that effect on you, or on someone you know, that does not mean that is their effect on everyone. Also, there exist several different classes of anti-depressants which work in wildly different ways. Being mildly depresssed may be better for you, as you say, but it is also possible that you've just not taken the correct drug. It can take a lot of experimenting with different drugs, combinations thereof, and different dosages. That they are overpresribed is not the fault of the drugs which have been literal lifesavers for many people.

Why yes, I do have a hot button on this issue.

MKK

#104 ::: Nancy Lebovitz ::: (view all by) ::: February 13, 2005, 03:36 PM:

Teresa, at least some fraction of your justifiable anger has been outsourced.

My nightmare question is whether whoever made the mistake(s) with your meds might have been mismedicated themselves.

Robert: losing weight is not "the cure" for mild sleep apnea. Some sleep apnea is caused by fatness, but some is caused by brain or anatomical weirdness.

In any case, c-paps and the like work very nicely for a lot of people and are a lot easier than losing weight, especially if you're running low on sleep.

#105 ::: Nicole J. LeBoeuf-Little ::: (view all by) ::: February 13, 2005, 04:31 PM:

Adding my get-well wishes and sympathies to the collection.

My own experience with misprescriptions was a lot less scary, oral contraceptives not being in quite the same category as brain chemistry stimulants, and I caught it before taking the first dose because of color-coding. But I admit it makes a gal furious when after arguing with the doctor about whether 12 times 28 is more or less than 365, and watching the very bad grace with which he gave in and upped the refill number, I then found that he'd prescribed me the 1/35 version instead of the .05/35.

(No, I haven't been back to that doctor since, thanks.)

Thanks for putting my grudge in perspective. I hope you're feeling more like yourself these days, or are at least well on your way thereto.

#106 ::: Nicole J. LeBoeuf-Little ::: (view all by) ::: February 13, 2005, 04:39 PM:

And, oh yeah -

Bless your heart, Mary Kay. You're touching on one of my own pet peeves here. The sly insinuations I have to put with from some of the population that my mother was a horrible parent for allowing my brother to be prescribed Ritalin, the patronizing declarations that ADD doesn't even exist and thus my brother was by definition misdiagnosed and misprescribed—it's enough to make me spit, sometimes. Yes, I agree that some children are misdiagnosed, some tragically so. I agree that some children oughtn't to be allowed within five miles of Ritalin. But before people start getting smarmy with me, I'd really love to magically shove them into my mother's shoes fifteen years ago when Ritalin was all that kept my brother from flunking out of grade school.

Thank you for doing your part to fight the irrational portion of the backlash.

#107 ::: farah ::: (view all by) ::: February 13, 2005, 06:05 PM:

I do hope you're feeling better now.

It took me two years to stop snarling at even the mention of the word "doctor" after the misdiagnoses and idiot prescriptions I experienced. I'm now firmly of the opinion that most front-line medical treatment would be better achieved by a multiple-choice test and a computer scanner.

#108 ::: Jonathan Vos Post ::: (view all by) ::: February 13, 2005, 06:57 PM:

========================
Slow Loris Blog-limerick
========================

There was a slow loris who’d had enough,
of Cylert prescriptions not up to snuff.
She had Narcolepsy,
Bitty white pills and Pepsi,
prone to error like that Boris Badinov.

========================
Jonathan Vos Post
13 Feb 2005

#109 ::: Yoon Ha Lee ::: (view all by) ::: February 13, 2005, 09:10 PM:

Yeeeeek.

I'm about to go on meds myself for something unrelated...cautionary, cautionary. I'm so sorry this happened, and glad it's been caught.

#110 ::: Robert Glaub ::: (view all by) ::: February 13, 2005, 10:01 PM:

Nancy -- that's why I'm going to be undergoing neurological testing. My doctor, who is very good, thinks that excess weight is the primary cause, but wants to be sure. Plus there are other things that need to be looked at, anyway...

#111 ::: Mary Kay ::: (view all by) ::: February 14, 2005, 02:06 AM:

Nicole: No problemo. SSRIs certainly saved my sanity and possibly my life. I can function almost normally with them. People who slur them, and those who take them, well, I try to educate. How can I not, given they gave me my life back? It isn't even the fault of most people who knock them. It's the fault, in part, of careless reportage, and, in part, of people out to make a buck by scaring people to death. Better living through chemistry is what I say.

MKK

#112 ::: Barbara Gordon ::: (view all by) ::: February 14, 2005, 03:10 AM:

At the risk of being repetitive: what they said. Such a rotten thing to have happen, and may it soon be mended!

Though considering what TNH has accomplished while cabin'd cribbed confined by inadequate meds ... I boggle somewhat at the thought of what she might do unhampered.
The Loris Unleashed?

#113 ::: Andrew Willett ::: (view all by) ::: February 14, 2005, 09:37 AM:

The Loris Unleashed?

Snort. I'd like to thank Barbara for the fabulous mental picture which I can only relate as
The Loris:The Loris Unleashed::A Moth:Mothra.

#114 ::: mayakda ::: (view all by) ::: February 14, 2005, 10:09 AM:

Hi Teresa, adding my get-well-soon wishes to everyone else's. Btw, good hubby you got there. Sounds like a keeper. :) May you both have a shamelessly sentimental and sappy Valentine's Day today.

Neurologists -- my only encounter has been with a pediatric one, when my 2yo had two seizures in a row (without fever). So the dr (the department head) comes in and starts talking about maybe it's this, maybe it's that, we could put her on daily meds or we could just observe, but his gut feel is yadda yadda yadda. And I'm thinking -- so basically you don't know what the bleep is going on in her brain? And _that_ was scary.
(Luckily with my daughter never had another siezure and they wrote it off as "we don't know what happened but she's ok now, so all's good")

So here's some good thoughts that you find a good neurologist!

#115 ::: Jonathan Vos Post ::: (view all by) ::: February 14, 2005, 10:12 AM:

Happy Valentine's day!

and (not unrelated):

"The brain... my second-favorite organ."
-- Woody Allen

#116 ::: Emma ::: (view all by) ::: February 14, 2005, 11:43 AM:

Theresa, my sympathies, and a sigh of relief that it was (1)a simple error rather than stupidity or malfeasance and (2)correctable.

#117 ::: John M. Ford ::: (view all by) ::: February 14, 2005, 11:58 AM:

To be fair to the pediatric neurologist, it is indeed very difficult to know what's causing seizures in small children. Many of them are associated with fever, and go away permanently when the fever ends. Some are due to electrolyte imbalances, which may or may not be easily fixable, depending on the cause. Some are structural brain problems, which usually show on CT, but not always. Some don't ever have a determinable source, though fortunately these usually go away without lasting effects. And almost all of these are indistinguishable in the beginning from epilepsy, which can only be positively diagnosed over time. To you, he may have been pumping blue smoke (and I wasn't there; maybe he was), but in his own mind he was most likely trying to cover all the possibilities, at least in part because -he- had to consider them all.

#118 ::: Ronit ::: (view all by) ::: February 14, 2005, 12:03 PM:

I'd just like to add my wishes for your good health.

#119 ::: mayakda ::: (view all by) ::: February 14, 2005, 12:51 PM:

To you, he may have been pumping blue smoke (and I wasn't there; maybe he was), but in his own mind he was most likely trying to cover all the possibilities, at least in part because -he- had to consider them all.

Yes, actually, I think he is a good pediatric neurologist. Normally that is exactly what I want from a doctor -- just being open and honest. What scared (and scares) me in that instance was the revelation of how little is known. Which, when it was my own kid being the black box, was rather terrifying.

I seem to be learning though, just from random reading and listening, that a lot of pediatric specialties are like that, specially when it comes to medications. Children are not just short grown-ups, it turns out. But there's a lot of ethical and practical problems about testing meds on children, so mostly the meds don't get tested, which is so not good. Just one of the (many) things the FDA should address.

#120 ::: Jonathan Vos Post ::: (view all by) ::: February 14, 2005, 12:51 PM:

Mayakda:

I second the motion of John M. Ford. Mind you, although I took lots of Neuroscience, microneuroanatomy, brain theory, and the like in Grad school, and have written an (unpublished) book manuscript popularizing that stuff, I Am Not A Neurologist (IANAN). Not to be confused with the fanzine [listed in M. HORVAT COLLECTION OF SCIENCE FICTION FANZINES]:
Time Ruined In Very Inoperative Activity, acronym left to the reader, and something of which I'm often accused.

As to CONTEXT for medical and pharmaceutical records, per several things in this thread, I'll note that this is done differently in the US, UK, other countries. As a UK example:
How do we set the records straight?
BMJ 2005;330:315 (5 February), doi:10.1136/bmj.330.7486.315

"In the United Kingdom there are plans to make elements of patients' electronic health records available to any practitioner with 'a legitimate care relationship' anywhere in the country. There is justifiable unease about confidentiality and consent in this new environment. Will patients understand what is happening to information about them, and will that information be secure?"

"Another cause for concern, which is perhaps even more fundamental, has to do with how a medical record's context contributes to its meaning...."

#121 ::: mayakda ::: (view all by) ::: February 14, 2005, 01:12 PM:

Time Ruined In Very Inoperative Activity, acronym left to the reader, and something of which I'm often accused.

*shocked*
:)

Venturing into even more OT territory, here's a link you might like:
http://www.guardian.co.uk/weekend/story/0,,1409903,00.html

#122 ::: Jonathan Vos Post ::: (view all by) ::: February 14, 2005, 01:35 PM:

mayakda:

From your OT link, something which suggests that I share a bit of that abnormality:

"He was born on January 31 1979. He smiles as he points out that 31, 19, 79 and 1979 are all prime numbers - it's a kind of sign...."

I may have over 300 prime-related publications to my credit, but my professionalism is -- in a sense -- a rationalization for a quasi-autistic obession/compulsion about primes and my specialty (semiprimes). In a sense, a mathematician is a person who has voluntarily rewired their brains by a lifetime's mediation, focus, reading, writing, and thought. Said rewiring is, almost by definition, very far from "normal" baseline mentality. But it CAN make excellent science fiction. I *strongly* recommend:

Heaven
Ian Stewart & Jack Cohen
Aspect, May 2004, $24.95, 343 pp.
ISBN 0446529834

Since Ian Stewart is an enormously published Mathematician and science writer, and Jack Cohen a biologist who has worked with SF authors before, this work is extraordinarily interesting to Mathematical Biologists -- but written so well, with such cool aliens and cultures, that it stands as a shoot-em-thriller at the mundane level. Really a breakthrough novel for both authors. No chapter from that would fit in Atlanta Nights, but maybe one of the kore technical-philosophical sentences, out of context, might seem unpalatable to the generic reader...

#123 ::: Deborah Green ::: (view all by) ::: February 14, 2005, 01:38 PM:

Hope you feel better soon!

#124 ::: Jean Rogers ::: (view all by) ::: February 14, 2005, 03:49 PM:

What they said.
Very much sympathy, panic at reading post turning to relief (mostly) to know that medication can sort this, proportion of that huge wave of outsourced anger, sheer amazement that even when not firing on all cylinders you have been posting the stuff you have (well, yeah, ok, the fall-off in quantity I'd noticed. But never mind the width, feel the quality!).
Me too.

#125 ::: Carol ::: (view all by) ::: February 14, 2005, 06:55 PM:

I do hope you're on the way to feeling better. And I do understand the long and inexplicable struggle, but in different ways.

#126 ::: Tina ::: (view all by) ::: February 14, 2005, 08:09 PM:

BAD doctor. NO donut.

Here's hoping that the switch back to normal dosage has quick and beneficial effect.

#127 ::: Georgiana ::: (view all by) ::: February 14, 2005, 08:21 PM:

Teresa - I am very sorry to hear about your RX problems and happy to hear it looks like they will be resolved without too much more torment.

I had to switch pharmacies last year when I was given the wrong dose of warfarin, which I take for a chronic clotting disorder. I am a difficult patient to manage and sometimes require transfusions to bring my clotting times down even when I am taking the right dose of medicine so this was fairly serious. The sad thing was this was the second time a perscription was filled in the wrong dosage. I had been given 100 mgs of something that I take 10 mgs of earlier in the month.

My doctor suggests that every time you get a perscription filled you count the pills to make sure you have the right number, check to make sure they look all right, and check the bottle to verify the number of refills is correct. Once you leave the store you can't really prove that you were shorted a few pills so he says ignore the nasty looks of the people in line behind you and make sure everything is correct.

I realize that sounds rather paranoid but my son does know a girl who works in a pharmacy who has an addiction and she gets her drugs by taking them two or three at a time from the customers.

#128 ::: Andy Perrin ::: (view all by) ::: February 14, 2005, 09:30 PM:

Let me add my wishes for a fast recovery to the rest. Also, happy Valentine's day.

#129 ::: Paula Lieberman ::: (view all by) ::: February 15, 2005, 12:47 AM:

Kevin wrote,

Have you folks read the Washington Monthly article on the VA Hospital system? The surprising title is "The Best Care Anywhere", and it's about how over the last fifteen years the VA has transformed itself from a bunch of inefficient, low-quality health care components into a supercharged, low-cost, best-in-America-and-probably-the-world health care system.

Ha, ha, ha. That is NOT my mother's opinion. She worked for the VA after WWII after getting out of the Navy, and had worked for the VA before going into the Navy I think. She's a disabled vet and was in a VA facility last year. She is not in a VA facility now.

#130 ::: Yonmei ::: (view all by) ::: February 15, 2005, 08:11 AM:

Yowch. That must have been terrible.

Glad it was fixable, and glad Patrick noticed it.

#131 ::: Suzanne ::: (view all by) ::: February 15, 2005, 10:36 AM:

Kathi: can I ask what the nature of your illness is? I have all the symptoms of hypothyroidism but still test "within the range". Rather than try to figure out what was going on, my doctor told me (and I quote) "You'd probably feel better if you tried to dress a little nicer."

#132 ::: mayakda ::: (view all by) ::: February 15, 2005, 10:52 AM:

I was going to ask our about narcolepsy -- what's known about it-- and decided to google instead.

Found some interesting stuff, including this report, which is fairly new. Two quotes:
"an underlying autoimmune process for people with a certain genetic profile."
"induced narcolepsy-like symptoms in smooth muscles of mice by injecting antibodies from blood samples of 9 people with confirmed narcolepsy."

What I've learned: Causes not clearly understood. Possibly genetic, possibly auto-immune, could be both.

And this sentence from the NIH pamphlet surprised me.
"It is as widespread as Parkinson's disease or multiple sclerosis, and more prevalent than cystic fibrosis, but it is less well known."

#133 ::: Leslie ::: (view all by) ::: February 15, 2005, 12:34 PM:

Nicole,

Ditto on the brother with AD(H)D. Ritalin was the only thing that got him through school from the elementary level on, and even with it his grades were often borderline failing, except for those few classes that captured his (sustained) interest. He still struggles with adult ADD and is taking new meds for that. So although misprescription and under/overprescription are all problems for so many drugs, I share your and MKK's frustration with those who want to go to the other extreme.

#134 ::: Think Again ::: (view all by) ::: February 15, 2005, 03:57 PM:

I dropped in from another blog where, it was said, your's was a blog worth reading. It is. Whether you are undermedicated or not.

#135 ::: Mary Kay ::: (view all by) ::: February 15, 2005, 04:44 PM:

Rather than try to figure out what was going on, my doctor told me (and I quote) "You'd probably feel better if you tried to dress a little nicer."

Suzanne: I suggest you might feel a little better if you repeatedly hit the doctor's head with a blunt object.

MKK

#136 ::: Marilee ::: (view all by) ::: February 15, 2005, 06:14 PM:

Suzanne, get a new doctor!

Mayakda, I didn't realize narcolepsy was considered auto-immune and genetic. My mother had narcolepsy. I don't, but I have tons of other auto-immune diseases, and nobody knows why I got the first.

#137 ::: LeslieS ::: (view all by) ::: February 15, 2005, 07:25 PM:

Suzanne-

after you've used the aforementioned blunt object on your doctor be aware that hypothyroidism is notoriously underdiagnosed and undermedicated in women. I have it, have had to argue about dosage in the past. Definitely worth finding another doctor and repeating the labs.

and like everyone else I'm glad to hear T's dosage problem was diagnosed and is fixable. I think the comment about checking and counting pills is very wise and will start doing so forthwith!

#138 ::: NelC ::: (view all by) ::: February 15, 2005, 08:04 PM:

Oh, T, please accept some more anger on your behalf. I wish I could see what could be done about it, though, besides the obvious -- and I'm sure you and Patrick will be double-double-checking the dose obsessively from now on.

Forgive my morbid curiousity, but what would have happened to you if they'd got the dose wrong the other way?

#139 ::: Tina ::: (view all by) ::: February 16, 2005, 08:40 AM:

Suzanne, I have to agree you need a new doctor, and more to the point, you should be aware that they're currently in the process of redefining what a healthy TSH level is, especially since your doctor may not be aware of it. The lab I went to is certainly still using the old range and my former doctor poo-pooed my results despite presence of symptoms as well as what would have been a borderline result even at the old range. This has something to do with why she is my former doctor.

The American Association of Clinical Endocrinologists is now suggesting that anything above a 3.0 -- as opposed to the old top end of 5.0 -- is probably worth treating.

Once I get myself moved across the country and working again, I'm going to print out the press release and take it with me to the new doctor along with my lab results.

NelC, if I understand correctly, Teresa takes a 37.5mg dose and they manufacture a 75mg pill, so it's possible if they'd accidentally doubled it she wouldn't have been at risk for severe overdose symptoms, though obviously I wouldn't bet on it. The symptoms of overdose are mostly CNS-related and can include nervousness, agitation, muscle tremors, vomiting, confusion, hallucinations, and seizures. Normal side effects include insomnia, headache, depression, nausea, and decreased appetite; serious side effects include some of the same symptoms as overdose, alas, including specifically confusion, hallucinations, and twitching/muscle tremors. Also liver damage, apparently.

Pemoline is a CNS stimulant, which is presumably why it's often given for ADHD and also presumably why it can help narcoleptics. But you have to love a drug where the drug info mentions they have no idea why it works...

#140 ::: mayakda ::: (view all by) ::: February 16, 2005, 09:04 AM:

I have tons of other auto-immune diseases, and nobody knows why I got the first.

Auto-immune diseases sound scary (to me) -- just the thought of one's own cells going haywire. Kinda like cancer. We know that at least one auto-immune disease is caused by a virus (HIV), and they've found that at least one cancer (cervical) is also caused by a virus. It makes me wonder if not a whole lot of other diseases might have viral origins (or triggers).

#141 ::: MikeB ::: (view all by) ::: February 16, 2005, 01:07 PM:

We know that at least one auto-immune disease is caused by a virus (HIV)...

Actually, AIDS is not an auto-immune disease. It's a disease of the immune system, which is different.

HIV attacks certain white blood cells. Once it gets into these cells, HIV can rewrite their cellular instructions, reprogramming them to produce a lot more HIV and distracting them from their main task of fighting other diseases. This weakens the immune system and eventually leads to secondary illnesses.

Autoimmune diseases don't necessarily involve a weakening of the immune system. Rather, they happen when a healthy immune system gets its targets confused and mistakes a normal, native protein for a mysterious stranger.

I don't know whether any of the autoimmune diseases are known to be caused or triggered by viral infections.

#142 ::: Beckie ::: (view all by) ::: February 16, 2005, 02:00 PM:

I don't think anybody really knows definitively what causes any autoimmune disease, but triggering by viral infections is one theory. Immune cells that recognise the virus and get activated to deal with that may recognise similar-looking self proteins too (this is why rheumatic fever can lead to the heart being damaged), or the presence of the virus may activate self-recognising immune cells that normally wouldn't be activated.

Beckie
(Immunology grad student and longtime lurker)

PS while I'm here I'll add my wishes for a speedy recovery, Teresa

#143 ::: mayakda ::: (view all by) ::: February 16, 2005, 02:03 PM:

My bad on the HIV/AIDS, thanks Mike.

That's interesting, Beckie.

#144 ::: Jill Smith ::: (view all by) ::: February 16, 2005, 06:30 PM:

Tina - hm. Interesting endocrinology link. Wonky thyroids litter my family with distressing frequency, so I have been getting tested annually since I was 30. My last test a few months ago gave a result of three-point-something (don't remember the value of "something"), so perhaps should call Kaiser and ask them to reassess...

#145 ::: Marilee ::: (view all by) ::: February 16, 2005, 09:13 PM:

Tina: "But you have to love a drug where the drug info mentions they have no idea why it works..."

I take colchicine for gout, and there's no idea why it works, either, but it certainly works well for me!

Had my pre-op with the hand surgeon today about getting the two tophi on the tendon in my right wrist out. The EKG and labs were all fine, but I have to see anesthesia tomorrow. They were worried about my weight (I actually weighed a lot more the last time Shirali took a tophus off and I didn't see the anesthesiologist *then*) and that I remember things when I have Versed.

#146 ::: MikeB ::: (view all by) ::: February 16, 2005, 10:11 PM:

Thanks, Beckie! It's good to meet a fellow academic lurker, especially one who is actually in the appropriate field!

Incidentally, five minutes after I posted my comment I found this intriguing hint in Matt Ridley's "Genome":

"there are strong suggestive links... between various forms of arthritis and various viruses..."

Looks like I posted five minutes too soon...


#147 ::: Bruce Arthurs ::: (view all by) ::: February 17, 2005, 01:17 AM:

Mary Kay wrote:

"Bruce: Anything that turns your into a zombie or which blocks you from feeling at all is a drug you don't need to be taking. However please try to realize that because those drugs have that effect on you, or on someone you know, that does not mean that is their effect on everyone. Also, there exist several different classes of anti-depressants which work in wildly different ways. Being mildly depresssed may be better for you, as you say, but it is also possible that you've just not taken the correct drug. It can take a lot of experimenting with different drugs, combinations thereof, and different dosages. That they are overpresribed is not the fault of the drugs which have been literal lifesavers for many people." [emphasis added]

I don't think I said, or even implied, that I'm opposed to the use of anti-depressants across the board. I'm aware of, and agree with, almost everything you wrote.

But the fact that overprescription is "not the fault of the drugs" doesn't change the fact that they ARE overprescribed. That opinion should in no way be taken as a blanket condemnation of the drugs.

#148 ::: David Goldfarb ::: (view all by) ::: February 17, 2005, 05:51 AM:

Actually, I can recall quite an interesting fact article in Analog some years back speculating that perhaps AIDS was an autoimmune disease, that HIV essentially caused the immune system to attack itself. But I imagine that if it were so there'd be research bearing it out by now.

#149 ::: Michelle ::: (view all by) ::: February 17, 2005, 08:39 AM:

I never heard more about it, but several years ago there was a theory that foreign cells, such as might be picked up during pregnancy, or even being in utero, might trigger some autoimmune disorders, which could explain why more women suffer from autoimmune problems.

See:
http://www.eurekalert.org/pub_releases/1999-04/NS-ADMB-210499.php
for a far better explaination.

Interestingly, though, I haven't heard anything about this theory since then, but I still find it fascinating.

#150 ::: holly ::: (view all by) ::: February 17, 2005, 10:23 AM:

i hate finding new doctors. i hope you are able to find a new neurologist soon and relatively painlessly.

#151 ::: DM SHERWOOD ::: (view all by) ::: February 17, 2005, 12:18 PM:

Belated sympathy for your misprecription. Whomever is resposible ought to be made nonconsentual GOH at a S&M Convention

#152 ::: Kathi ::: (view all by) ::: February 17, 2005, 01:16 PM:

Suzanne: It turns out I have Lyme disease, fairly advanced--somewhere between 4-12 years duration, at my own guess. The first Lyme test was done at Igenex, a good lab, and was a Multi-panel PCR test. Unfortunately, current Lyme tests have a high false negative rate. The symptoms did not vary, even though my nutritionist kept me too healthy--in fact, he says it may be why doctors were unwilling to test me any farther. Only the raging arthritis is a clue to my condition. Finally, reports came out in early 2004 about a study being done on an antigen test for Lyme. The doctor working on it has a reputation for creating fast, accurate antigen tests.

http://www.bowen.org/

What happens is, they test your blood, your doctor gets a fax within 24 hours, and a color photo of your blood is sent to the doctor within 48 hours. Because of me, my doctor/nutritionist entered the program, so I was tested. I have CWD Lyme, cell wall deficient--it's been around enough generations for the cell walls to vanish, and the walls are part of what the most popular tests look for, apparently. After the new test is done, the blood is then sent to Michigan (from FL) to be cultured in the long, expensive manner, as a crosscheck for the accuracy of the new test. We have not been informed that the results changed when my blood was cultured--so I did the European treatment for Lyme, since a) I've had it so long they usually talk IV antibiotics and b) I have no insurance.

I explain all this in case anyone knows people at the end of their rope, looking for explanations of something. It wasn't cheap to eliminate this--I took the test hoping to eliminate the possibility once and for all--but the group is set up as a nonprofit, so the test is a write-off, since you receive no goods or services. They won't treat you. (Irony here--if I lived in CT or MA, doctors would have caught and treated it immediately.)

There is thyroid support on the market for people who are low normal and tired, but do not need prescription meds. However, the thyroid is a powerful and critical organ--I wouldn't advise self-treatment. Find an MD, DO, or a DC who has been licensed in nutrition and work with her/him. My low thyroid may be natural to me, or from the Lyme, but I still need to treat it or I am exhausted and can't think.

Hope this is useful--

#153 ::: Barbara Gordon ::: (view all by) ::: February 17, 2005, 05:14 PM:

Off topic, for which I apologise, but it seems to fit better here than the nagging thread.

A moment to note the passing of Eleanor Gould Packard, 1917-2005, who for 54 years oversaw the New Yorker's prose.

There's a New York Times obit, but one has to be signed in. I have stolen the following paragraph from it:
She was proud of her status. She cited the pinnacle she reached in 1972: a separate credit in "The Elements of Style," the hugely popular text written by William Strunk Jr. and revived by E. B. White. The citation, which says, "The co-author, E. B. White, is most grateful to Eleanor Gould Packard for her assistance in preparation of this second edition," recognized her as the linguistic equivalent of the Pope's confessor.

#154 ::: TalkLeft ::: (view all by) ::: February 17, 2005, 11:45 PM:

Teresa, I just dropped in to see what you've been up to and read of your awful ordeal. I'm glad you and Patrick have figured it out and are remedying it. Take care of yourself, don't try to do too much too soon, and find a really good neurologist. Your reader's comments are great.

#155 ::: Karen Funk Blocher ::: (view all by) ::: February 18, 2005, 12:15 AM:

Oh, aargh. Oh. And oh again. I've coming into this threat late, so I'm hoping by now things are better for you.

The following is only somewhat related. Please bear with me.

At the end of her life, my mom was on an antidepressant, an antipsychotic and four or five other things. She had a week or so that summer of being semi-conscious: awake enough to take a bite of hot dog on command, not conscious enough to know that one takes a bite from one end, not the middle, or that the hot dog would probably be better with a condiment on it.

A flurry of appointments followed, with a variety of doctors. Nobody knew what had happened or why. In September or October she got a prescription from a neurologist, ostensibly to prevent recurrence of a seizure she had had during an EEG. Within two weeks, she was semi-conscious again. Thanksgiving was a horror show, as she consistently brought an empty fork to her mouth. Bad prescription? Drug interaction? Malpractice, bad luck, or psychosis? I'll never know.

All of which is to say that you have all my sympathy, and I'm VERY glad that there's something simple to be done to help. As stupid and unnecessary as your recent tribulations have been, it's much better to have a probable cause and solution at hand than to be still in a holding pattern, waiting for doctors to sort things out by trial and error.

Karen

#156 ::: Jon Sobel ::: (view all by) ::: February 18, 2005, 04:35 PM:

Just dropped in after seeing you and Patrick last night - I trust the fact that you looked well means that you're on your way back from wrong-dose hell! My full sympathies.

The whole things sounds suspicious to me. I'll bet it was a nefarious plot by some acquaintance who, cursed with merely-average intelligence, got frustrated trying to Keep Up With The Nielsen Haydens.

#157 ::: Alter S. Reiss ::: (view all by) ::: February 19, 2005, 09:22 PM:

I wonder what it says about me, that once I got past the point where it became clear that the post was up to tell us that the problem was going to get better, that my instinctive reaction to the slow loris symptoms was a sympathetic "aye-aye-yi".

I hope that everything is back to normal with you before too long.

#158 ::: Susie from Philly ::: (view all by) ::: February 22, 2005, 09:30 AM:

I have narcolepsy, ADD, and thyroid something or other. Been through the whole mill with meds - Ritalin (caused Tourette's-like tics), Adderall (teeth grinding, kept me awake but didn't help with focus, chest pain, high blood pressure, suicidal depression upon withdrawal) and Provigil - which I loved but can no longer afford.

However, I've noticed time and time again that if I stay off carbs completely (no cheating), I can stay awake reasonably well.

#159 ::: mayakda ::: (view all by) ::: February 22, 2005, 11:08 AM:

However, I've noticed time and time again that if I stay off carbs completely (no cheating), I can stay awake reasonably well.

That's interesting. I low-carb, but since I'm on maintenance now, I tend to cheat, and when I do cheat badly, I get awful hormonal breakouts in bad places. :(
Our family tends to type 2 diabetes and PCO, so I think I'm probably on the knife-edge of "normal", when it comes to the whole hormonal balance thingie.

#160 ::: Anarch ::: (view all by) ::: February 23, 2005, 01:37 AM:

I've been suffering from mild narcolepsy the past few years due to my constantly-changing CFS -- never the same symptoms twice! -- so here's to your renewed health.

#161 ::: Anarch ::: (view all by) ::: February 23, 2005, 01:45 AM:

Oh, while I'm here...

Marilee: I have to have 32oz of Gatorade a day.

I'm in a roughly similar predicament; my body doesn't seem to retain water properly, probably due to an electrolyte imbalance. I know I'm seriously dehydrated when I can chug a 32oz bottle of warm Gatorade in under a minute. Preferred flavors for Gatorade (warm or cold) are Fierce Grape, that Glacier Freeze weirdness and their new Xtreme Citrico, I think it is, in case anyone's interested.

Jonathan Vos Post: In a sense, a mathematician is a person who has voluntarily rewired their brains by a lifetime's mediation, focus, reading, writing, and thought. Said rewiring is, almost by definition, very far from "normal" baseline mentality. But it CAN make excellent science fiction.

As a mathematician-to-be (ABD, baby! ABD!), that's so true it's scary. Hell, it may become my new sig until I'm no longer afraid of it.

#162 ::: Ray Radlein ::: (view all by) ::: February 23, 2005, 05:50 AM:
[....] constantly-changing CFS -- never the same symptoms twice!

You can say that again! I sometimes envy the sudden-onset folks for the "gift" of knowing that something was wrong almost immediately. When you combine gradual onset with the Wheel O' Symptoms it can take months to decide for certain that something is definitely wrong.

Well, at least it can if you're me, that is.

#163 ::: Marilee ::: (view all by) ::: February 23, 2005, 05:31 PM:

Anarch, I used to get the Freeze flavors, but Gatorade is only making two of them in 32oz now, so I tried Fierce Grape, which reminded me of grape popsicles, and I have Fierce Berry yet to try, plus the orange Ice. When you have to drink it every day, you like some variety.

Jill kindly drove down from Potomac today to take me in to Kaiser Falls Church and sit in the waiting room while I had the surgery on my wrist. Then she drove me home! The hand surgeon thinks it's a lipoma, not a tophus, but Path will tell.

#164 ::: Jonathan Vos Post ::: (view all by) ::: February 23, 2005, 05:50 PM:

Marilee:

Fingers and toes crossed on your diagnosis and prognosis.

Anarch:

"As a mathematician-to-be, that's so true it's scary."

Without using any equations in front of the gentiles, how does it FEEL to go through the Dr.Jekyll transformation, at the Edge of Chaos, somewhere between the Laplace Domain and the Twilight Zone?

Second the "ABD, baby! ABD!"

#165 ::: Kate Y. ::: (view all by) ::: February 24, 2005, 07:02 PM:

It's really unfair of the universe that we have to deal with doctors precisely when we are not 100% fully functioning. Like having to come up with breakfast on an empty bloodstream.

And then there's the whole gradually-simmering-frog thing, which remains a useful metaphor even if not actually true of frogs.

I have been noticing, over the past year or so, an slowly-increasing tendency for my brain to hand me the wrong word (and protest "What! Use that one! It's perfectly good!" when challenged). Trains of thought derail in mid-sentence.... But everyone mis-speaks sometimes, and it's really hard to quantify something like this, especially from inside it. The more obvious the problem (to me), the more difficult to try to communicate it to anyone else! Aargh! I have not been looking forward to trying to deal with this.

Anyway, based on other cues (and overnight testing), I've just been diagnosed with severe sleep apnea. It may turn out that my brain crapping out on me has just been the effect of years of sleep deprivation! Yee-ha! Here's hoping.

As always, thanks for sharing, Teresa.

#166 ::: Anarch ::: (view all by) ::: February 25, 2005, 03:11 AM:

Without using any equations in front of the gentiles, how does it FEEL to go through the Dr.Jekyll transformation, at the Edge of Chaos, somewhere between the Laplace Domain and the Twilight Zone?

I'm in set theory, so, well, it's odd; everything I read is of the form "If X, which we cannot know is true, happens to be true, then Y, which we also cannot know to be true, happens to be true." I spend my days thinking about "possible universes", whatever the heck that means, as if the one we're living in isn't enough, and getting frustrated by the fact that the limitations of mathematics mean that I have no examples of what the bloody things look like.

All in all? Fun as all get-out, but I completely understand the necessity of a quasi-autistic obsession to Break On Through To The Other Side.

#167 ::: Anarch ::: (view all by) ::: February 25, 2005, 03:13 AM:

BTW, Marilee, these new X-Factor Gatorades are pretty damn good. [I'm drinking the Lemon-Lime + Strawberry right now and it's actually palatable warm!] My local Walgreens is having a sale on Gatorade, a buck a bottle; I figure I'm going to get about a dozen to tide me over the next few weeks and, as an added bonus, I can afford to get experimental!

#168 ::: Terry Karney ::: (view all by) ::: February 25, 2005, 01:33 PM:

Teresa,

I thought you might like to know that via Liz Ditz you have been included in a medical weblog.

Interesting idea, seems a blog ring of medical bloggers has instituted a Grand Rounds, and each week someone else in the ring gets to write it.

This weeks Grand Rounds:Catallarchy is about patient interaction and you, as well as Instapundit, are mentioned.

All told the article seems disjointed, and lacking in focus but it was surprising to see your name in it.

TK

#169 ::: Terry Karney ::: (view all by) ::: February 25, 2005, 01:33 PM:

Damn it. Somehow the html isn't working.

http://catallarchy.net/blog/archives/2005/02/22/grand-rounds-xxii/

Is the link to the piece.

TK

#170 ::: Marilee ::: (view all by) ::: February 25, 2005, 05:49 PM:

Anarch, I'm disabled and couldn't possibly bring Gatorade home from the store every week, so I have Peapod bring it once a month (along with frozen and canned food and other heavy & bulky things). Peapod has the 32oz Gatorade on sale for a dollar a bottle every four months or so -- I got this month's for that price -- so maybe it's a company-based sale.

#171 ::: RC ::: (view all by) ::: November 28, 2005, 09:41 AM:

The REAL reason CYLERT is being taken off the market has NOTHING to do with the issue of liver toxicity. In my opinion, it has to do with the fact that it greatly enhances auditory abilities and sensitivity. As those of us in the Seattle Area who take CYLERT can keenly testify to is when Extremely Low Frequency testing (and other related testing) is taking place here. I'm sure that if it got out to the public and to all eager drug experimenters out there that you can have "super hearing" while taking Cylert, it might upset a few folks. If I elaborate any further, I'm sure I'll be getting a knock on the door by some nice fellas in black suits. Let the TRUTH be told.

#172 ::: TexAnne is suspicious ::: (view all by) ::: January 16, 2006, 12:35 PM:

Susan R is incoherent, and her URL is "fairrx.com."

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