wormy

Well, Riley (kitten) is still on isolation.  The vet thinks he has the upper respiratory infection that’s going around the shelter, but that was before we got his stool results back.  Turns out my little boo has worms.  Two kinds in fact.  Roundworm, which is contagious to humans and other animals; and lungworm, which they tell me “you’d have to eat a slug” to get.  Mmmmm.  Since kitten is still running a temp (I don’t take his temp, can’t quite bring myself to do that to a cat – but his paw pads are warmer than is normal) so we’re keeping him separate for now still.  This means my time is divided into everything else and “kitten time” and kitten time = handwashing after and changing clothes.  I’ve put him on droplet precautions.  And lots of box scooping and cleaning.  And meds.

But he’s so cute!

orange and white tabby kitten with paws in a person's hand.

Love is a cuddly kitty.

Still eating, using the box, playing…so he’s not doing too badly.  Just for now, still on “lock down”.  He’s a cute little prisoner, isn’t he?  In the picture above, he’s holding my hand.  Regular readers will know it’s my hand by the erythromelalgia that is apparent in my cherry red fingers.

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painful week

The weather has not been kind to me this week.  I really could use a little kindness.  Wednesday, something in my thigh pulled and my toe was desperately trying to break free of its proper alignment.  Yesterday, my right hip and pelvis decided to get in on the act, leaving me with pain here, pain there, pain pain pain.

So I hobble and limp around and wonder how long it will be before I am back to the cane.  If this weather keeps up, soon I think.  I recall that last Fall was bad too.  Must be the season change.

Hubby’s still sick.  Or sick again.  Bad GI stuff going on for him.  No idea what brought it on, but he and the toilet have been bffs since Monday.

And it’s busy time at work.  Not a good time to be sick, but what’s new.  I’m seeing my PCP next week to discuss how the not very special specialist appointment went, strategize on how to approach the next one, and possibly order the anti-acetylcholine receptor antibody that the last doc wouldn’t run.  Grrr.  And then it’s off to the ENT doc since the oral/nasal thrush came back last week….ah that reminds me, time for a fluconazole.  It’s helping, but I know this infection.  Usually, it has an initial response to fluconazole, then after about 5 days of waning it comes raging back.  We can add sinus pain to the pain list.

what’s not fun

…Is a nasopharyngeal swab.  Nope, not one bit of fun.  Warning:  a bit of “ick factor” in this post.  

A wire with a blob of cotton on the end.  Up my nose.  All the way to the pharynx.

My doc says “oooh, bloody snot?  I love that stuff!”  I did mention he’s an infectious disease doc, right?  So out comes the swab and up the nose it goes.  Yowch.  But it’s done and off, so I’ll know what’s going on up there, which is good.

Why does no one want to buy that I’m basically riddled with candida?  I know that the whole “systemic candida” is apparently a trendy catch all for the lovers of colon cleansing and whatnot, but honest to god, I get real live overt candida overgrowths at the drop of a hat.  Dry mouth?  Thrush.  Antibiotics?  Thrush.  Oral allergic reaction to something I shouldn’t have eaten?  Thrush.  Flu that knocks my immune system on its ass?  Thrush.  Given that all this thrush started as a result (I think) of a well intended but silly doc prescribing steroidal nasal spray, I see no reason why candida overgrowth in my nose would be such a stretch.

But that’s what cultures are for I guess.

The problem with culturing for candida is that candida is just there, even in non-symptomatic people.  Even in the “healthy” folks.  It’s bad when it is there in abundance, bad when it becomes invasive, bad when it gets into places it shouldn’t be.  And for the record, your mouth is a place where it lives and should be, just not in abundance.

So how do you know, if a culture grows out candida, that it means the sick person is sick from an candida overgrowth?  From what I’ve been told, you don’t.  I think a better option would be in office slide under a microscope.  See a lot of candida?  Then you have an overgrowth situation.  Not responding to fluconazole or topical agents?  Send it out,  but send it for a culture and sensitivity please.

Eh.  When I rule the world, things’ll get done right, dammit.

Until then, I have a script for more fluconazole and a script for an antibiotic that is supposed to be kinder on the gut.  I’ll start it when I have a chance to pick up some probiotics, because god knows I don’t need to go taxing the gut right now on top of everything else.

Kitty’s doing better.  Still a little drunk.  She let me pick her up and lay down with her in my arms for several minutes.  This does not happen under normal conditions.  Normally, I (and only I, not my husband) am allowed to pick her up and hold her for as long as it takes to walk to a bed or couch, then she scrambles away from me like she just remembered that I’ve got cooties.  Today, she stayed nestled in my arms as I lay on the bed.  She purred up a storm and kneaded my shoulder (thankfully I am wearing a sweater).  A nice treat after a tough day and a tough week.

mistakes were made

I just finished reading a chilling essay by an ER doctor at a local B.A.T.H. relating his experiences with a hospital’s massive, life ending errors during the care of his mother.  The article is titled As She Lay Dying: How I Fought To Stop Medical Errors From Killing My Mom, published in Health Affairs.

Here’s the part that moved me to tears:

“I wish I’d done more at that point—raised hell, insisted on waking both my mom’s oncologist and the hospital’s intensive care doctor at home, demanded that they come to the hospital. Instead, by that point I felt lost and powerless. I’d already insisted that my mom be moved to the ICU. What would happen if I made additional demands? Would the ICU nurse start avoiding my mom’s room? If I criticized my mom’s oncologist, what would happen to their relationship? I knew there could be a downside to being too demanding in a hospital.”

Yes, there certainly can be.  This is a grinding, soul crushing position to be in – knowing that the standard of care that is being delivered is wrong and bad  but also knowing that your advocacy will be seen as so contentious that it could result in a lower standard of care; having said everything you can as well as you can say it and being dismissed; feeling like there is nothing else you can do.  It is a terrible, helpless feeling.  When my brother was suffering from a MRSA pneumonia in a little crap hospital that makes its money off baby birthing and out patient oncology treatment, I recall having a similar feeling.  Can’t they do a sensitivity on the specimens to find out why it isn’t responding to vancomycin?  Can’t the nurses fix the IV line since it’s clearly infiltrating? (my mother actually ended up redoing it one night after over a day of pump alarms and my brother’s arm swollen up…she got caught and an incident report was filed.  I still wonder if in the incident report anyone bothered to mention that (a) she’s been a nurse – including ER, trauma/burn, and ICU – for 40 years (b) the floor staff were avoiding my brother’s room because he was HIV positive and had a MRSA pneumonia and they didn’t want the hassle of gowning up).  My brother’s illness was slower moving that that of the mother of the author of the essay.  Because of this, we were able to successfully advocate for his removal to a B.A.T.H., where they did do real testing on what they got out of his lungs and discovered that this was not garden variety MRSA (vancomycin resistant and PVL positive).

You want to think that medical knowledge and familiarity with “the system” will help in being a good patient advocate, whether you’re advocating for a loved one or yourself.  You want to think that a plea – phrased carefully and civilly – for a better level of care, more attention to protocol, would not fall on ears deafened by ignorant adherence to all the wrong values.  This essay highlights how medical care environments can so easily be a system where dysfunctional politics and personalities are allowed to flourish, where more value is placed in not wanting to step on professional toes than in putting in place best practice protocols (read the part about the hospital administrator’s reason for why the hospital didn’t have a policy where ICU doctors took lead in caring for ICU patients).

What’s in your gut?

Icky but cool – cool from the perspective of open source data.  I don’t think I’ll be participating since god knows my gut gets enough study as it is, but I thought I’d share this because I find the research model extremely interesting.  I’m also certain that my primary care is going to flip over this.

From the project site:

http://www.indiegogo.com/americangut

The Human Microbiome Project and other microbiome projects worldwide have laid an important foundation for understanding the trillions of microbes that inhabits each of our bodies. However, opportunities for the public to get involved in such research has been limited. Now, American Gut gives you an opportunity to participate and to compare the microbes in your gut to those in the guts of thousands of other people in the US and elsewhere. American Gut is a project built on open-source, open-access principles. Our data are for the good of understanding and will be shared both with participants and with other scientists. Our experience has been that our best ideas and work come when we involve people in as many steps of our work as possible, be they scientists, educators, roofers, ultra-marathon runners or corporate leaders. Everyone has something to offer, whether their sample, their hypotheses, their analyses or their dog (yes, their dog, we will get back to that). The more we can understand the complex microbial ecosystems on which we depend, the more everyone will benefit.

  • 10,000 people needed – join us!
  • Our Team: 30 scientists with over 800 publications
  • See how your microbiome compares to our community and learn how you might achieve an optimal or more healthy gut
  • we start mailing out the PERKs (kits) in January

What is American Gut?
You’ve probably heard by now that the trillions of microbes living on and in our bodies are changing both the way we think about health and disease and even how we define Self. Ever wonder what’s in your gut? Ever wonder how your diet might shift your gut microbes (for better or worse), or how simple lifestyle decisions may have a dramatic impact on your gut and overall health? Ever wonder which microbes on your husband sometimes make him smell funny?

The gut is our main focus, but it is also interesting to look at oral, skin and even vaginal communities for several reasons. It might be possible to develop biomarkers–canaries in our corporeal coal mines that let us predict aspects of your gut health based on a spit sample or a reading (swabbing) of your palm. We know, for example, that arterial plaque shares microbes with the mouth but not with the gut. Could we use plaque samples to predict features of our hearts? Maybe.

hard to swallow

scale image of pill camera used in capsule endoscopy vs. U.S. nickel

PillCam...hey I probably can choke that down.

Down the hatch Thursday. On the plus side, the capsule endoscopy prep is Mag-citrate and not that horrible gallon of liquid plastic crap.  On the down side, I have to do clear liquids “after breakfast” Wednesday. Ha, well that’ll be coffee then clear liquids for the rest of the day because, on the advice of the NP at my last GI doc’s office, I don’t eat breakfast.

And speaking of things to swallow, I had a big helping of familiar but difficult disappointment today, fortunately there was some compassion to wash it down:  I had my follow up/sick visit (nearly all visits are sick visits for me) with my primary care.  Nothing conclusive.  Abnormal fecal fat.  Low BUN.  As reported earlier, the blood cortisol was a little on the low end but still in normal.  24 hour urine was all good.  I asked “what’s low BUN mean?” and he said he really wants that fluid deprivation test the nephrologist ordered.  “It might be diabetes insipidous ‘light’.”  Which is exactly what the nephrologist wanted to rule out.  My PCP asked how the specialists were.  “Were they all ok?  Do you feel like any of them need to be corrected or put back on track for what I sent you to them for?”  “I need to know – it’s my job to coordinate this for you,” he added when I sort of pissed around on whether they all were doing what they were supposed to and how I liked them.  Ok, unpacking that, what I said was “I don’t know.  I think they were ok – I tend to judge doctors more on the follow through, as in how they do if and when tests for the obvious stuff come back negative or equivocal.

Ok, they all seemed decent.  Cardiology was best – she was addressing the hypotension.  Hadn’t gotten the tilt table test, he’s going to make sure she got the results.  I told him that my impression was that endocrine took a sort of a “let’s wait and see”, i.e., it seemed EndoDoc wants to see if what and how I eat is setting off my blood sugar and if that’s what’s making me feel shitty.  “Yes, but I wanted him to look at why you’re hypoglycemic,” my PCP said.

I told the PCP that the nephrologist seemed a little aspergers-y and that I thought he was paying a lot of attention to the lyme disease – which I don’t like, but maybe that’s not reasonable of me.  The PCP explained that Lyme disease can have implications for kidney function.  Ok, I guess I missed that.  I do remember that the nephrologist mentioned something about that.  I guess when doctors start talking lyme sequelae, my brain seizes up.   I mean I sort of heard it when the nephrologist told me that lyme can do something to your kidneys or fluid processing….I think my brain just loaded and ran the scrip I heard so often from my last PCP in CT, who I’d go to when some new thing was rearing its head or when some old thing had gotten worse and who would do a couple of tests, refer me to a naturopath or a questionable specialist, then declare me “post lyme chronic fatigue”-y or “chronic lyme”-y if nothing came back remarkable, which unfortunately went with her then writing me and whatever the symptom was off.  This is how I come to have a chronic rash, for example.  Or the cycling intense fatigue, fevers, malaise (boy that’s a loaded term…I’ll write about it some time) that have been in high gear since early Spring 2009.

BTW, this was the huge fucked up history that poor 1st year resident had to slog through on Friday.  That history plus the bristly prickliness I have about how it and everything that’s come since was all handled by too many of my primary cares, including the one who hemmed and hawed on my initial lyme diagnosis despite this rash.

large E.M. rash on torso, lyme disease diagnosed.  ELISA equivocal, western blot positive IgG and IgM but not CDC criteria

my big fat lyme rash, Summer 2002

At some point in my visit today, my current PCP also apologized for all the tests and appointments.  I told him I knew what I was signing up for – but that this is why I hadn’t rushed off to have that fluid deprivation test done.

Back to the results of what’s been done so far.  In addition to the abnormal fecal fat, normal 24 hour urine creatinine and cortisol, as usual, some vitamin levels came back crappy.  D is low (again) and a couple of Bs were on the very low end of the range.  My magnesium could be better, but it’s in range.  Well, we’ll see how the capsule endoscopy goes.  And the fluid thing.  There are a few things pending, but they aren’t really make or break sorts of things – a couple of repeats and urine electrolytes.  I see that look on his face – the “I’m doing everything I can think of but fuck if I know what’s going on with you” look, and I’m spooked.  He’s not given me reason to think that he’s going to wash his hands of me, get all dismissive of what’s up (e.g. no vitamin therapy, no low dose corticosteroid) but still I felt that sinking feeling.

I’m reassuring myself by reminding myself (with the help of my husband) that if in the end my PCP can coordinate my care, thoroughly investigate any new and enduring symptoms, and treat the chronic stuff as it flairs, he’ll be head and shoulders above most of the doctors I’ve seen in my life, and whole body lengths above nearly all of the doctors I’ve seen in the last 10 years.  Trying to keep my hopes up here.  Realistically up.

Ah, and as for the vertigo/imbalance thing:  He referred me to a neurologist, whom I’ll see soon and locally I hope.  “The dysequilibrium you described does not sound like vertigo” he wrote in his note (which he gives me a copy of at the end of the appointment – I said I liked this guy, right?)  We discussed that it could be migraine in overdrive, in which case I need something more than a prophylactic med (elavil) for it.  And that alone warrants neurology, or as the PCP said “What do I know?  I’m just a bug guy.”  Hardly, but I get his point.

So all that’s a lot to swallow.  But as I mentioned, I knew what I signed up for and it’s nice to have some compassion to wash it down with.

“What’s going on?”

A friend recently asked this with regards to the health stuff.  She’s been a great friend through this.  She’s busy with her kids and her life several states away, but when we talk about my health problems, she listens and she asks questions and she expresses concern, support, and empathy.  I am so grateful for this.  Especially today, since it contrasts so sharply with some family of mine – specifically, my sister.

My sister knows I had my big follow up appointment on Thursday.  She called me Thursday and Friday, both times leaving a long voicemail message all about her.  Ok, whatever, she’s got her own stuff going on (looking for a new job to escape her PI who has modified the animal research protocols in her lab in bad, bad ways and who is truly an awful boss).  My sister and I talked today and we spent about 3 minutes out of the 45 minute phone call talking about my health stuff and then the rest was all about her.  And not anything new about her and her job search, but a replaying of the top ten greatest hits of what I call “fear and loathing in the biomedical research job hunt”.  She’s massively PTSD from all the family crap, and she has a tendency towards obsessive behaviors.  This was not a fun conversation.  Her transition from hearing about my medical news to the many minutes too long rehashing of the same old shit about her was quite abrupt:  “So, I don’t know if I told you but…” and then on to the thing she has told me nonstop for the last week.

Ugh.  Draining.  I’d understand if I was always unloading on her about my health problems, but truly I am not.  Part of why I blog so much on this shit is that aside from my husband, I don’t have anyone else in my day to day life that I do talk to about it.  Not honestly and unguardedly at least.  Privacy issues, stigma, and the emotional nature of dealing with chronic, disruptive health problems all keep me skimming the surface most of the time in my day to day.  I am very conscious of not wanting to “go on” about this stuff with people.  But I thought at least that my sister would give a shit about the outcome of all that testing.

Sometimes I’m such a blithering optimist.

So here’s what I wrote to my friend who asked “What’s going on?”  The topic started out because I asked if she had a suggestion on glucose meters (her husband’s got type 1 diabetes).  I figure this is a decent update for the blog too.

I got a new doctor who is doing an exceptionally thorough work up. So…had a glucose tolerance test and I’m hypoglycemic. I’ve been dizzy all damned week so he wants me to get a glucose meter to see if the dizzies go with blood sugar. I did a thing called a “tilt table test” a few weeks ago too. It’s meant to test autonomic function, which I guess in this case is really just about looking to see if your nervous system and your vascular system talk to each other right. And I failed it. They put you on a table and hook you up to a heart and BP monitor and you do all sorts of strange breathing exercises. Then they tip you upright to about 60 to 70 degrees so you’re basically “standing” without having gotten up and with most of your weight being borne by the table you’re strapped to. If you nervous system and your vascular system coordinate properly, you might get a little lightheaded but you don’t pass out. I passed out.

This wins me a cardiology consult and a nephrology consult (kidney). Cardio is to make sure it’s not an arrhythmia which has me feeling like shit all the time and which would account for the whole passing out/shittty vascular response I showed on the tilt table. Also, the doc heard a mitral valve murmur when I was in for my follow up (with dizzies).

Nephrology is because I guess I keep testing out as being dehydrated (that whole orthostatic hypotension thing, I stand up but my blood doesn’t) but having low sodium – that plus the feeling like shit plus the passing out on the tilt table might mean my body’s not balancing fluid properly. Apparently nephrologists check that.   Or this nephrologist checks that.  And hey, funny story – the nephrologist was a wee resident I and my sister worked with at the hospital wayyy back in the late 80s/early 90s.  Small world.

And then there’s an endocrine appointment. This is for the hypoglycemia and the feeling shitty.

I also have to pee in a jug for a day and do horrible things with poop and cups and vials and whatnot.

The common element in all of these appointments is the feeling shitty. The new primary care is being remarkably thorough about following the leads, which, while a bit of a pain in the ass to go through is good because I truly do feel fucking shitty and I’ve been dealing with this shit for years now. I’d like to know if there is something that can be identified and treated and he’s the first primary care I’ve had who seems to be interested in leaving no stone unturned before handing me the “well you’re just fucked, I have no answers, enjoy feeling shitty all the time, bye!” answer.

I signed myself up for this. After I discovered my boss was not going to be ok with me having surgery this summer and after I realized how much my (former) primary care largely was not good, I decided to (a) postpone surgery until winter break and (b) spend some time in the meantime finding a new primary care and hopefully getting a handle on some of this feeling shitty all the time shit.

So it’s finger sticks, cups, vials, and jugs for me for the next month or so.

That’s what’s up. And that’s also what happened to your care package that I said I was going to send you before the family road trip west. Once I saw this new primary in June, it was kind of like the staring pistol for a marathon….I had the tilt test and a round of cups and vials the week I was going to get stuff together for you. It ended up a bit of a mess. Sorry. I felt bad. Which is also why you haven’t heard much from me.

What to say?

My brother and I were talking about how difficult it is to put together a cohesive narrative, autobiographically speaking.  We were talking on the topic of job interviews (my sister’s currently looking, employed but not loving the job).  “I’ve gotten very good at this,” my brother said.  According to him, the last time he was in the E.R., the doctor taking his history told him he was amazed at how much information my brother had been able to get across.

I need this now.  Granted, my history is not quite as remarkable as my brother’s.  Little brother has HIV, HCV, a history of syphilis (oh christ how do you spell that?!), giardia, MRSA (skin and lung)…I think I’m forgetting something, and that’s not touching on the family/psych history stuff.  So mine is a little less hair raising – thankfully – however it doesn’t have short names.  So for each complaint, there is this long rambling crap that goes with it.  How do you boil this down?

I’ve been thinking about this because I have my first appointment with the potential new primary care doctor on Thursday.  I feel, as my brother would say, like a “hot mess”.  Maybe I should just write that on the history forms.  Dx: hot mess, 2002.  That’s about as good as “post lyme”.

The problem, ok, a problem with saying “post lyme” is that I have no idea if all the symptoms I have had since having Lyme are in fact part of the “post lyme” or something else.  Also, wtf is “post lyme”?  I mean, to too many doctors it seems to mean “Ah, I can comfortably ignore your symptoms because ‘post lyme’ is an ill-defined phenomenon at best and is not curable”.  But if I don’t say “post lyme” and instead list off everything with dates and progression, well, I’ll be there for a while.  Long enough to see the doctor’s eyes glaze over and the beginnings of the long white beard starting to twine down into the stethoscope.  And then there’s the not post lyme.  There’s the gynecological stuff.  The migraines I had before lyme but which maybe got worse after unless those head aches and dizziness spells I get now are not migraines but something post lymey, or not post lymey but something that just happened to start post lyme.

Ugh.  You’re starting to see the problem.  Throw in the intestine stuff too for good measure, why not?

My therapist suggested just presenting a list of the symptoms without trying to categorize them or cherry pick (my term, not hers) based on what I think they will think is relevant.  Let the doctor figure out what is relevant.  This was something she suggested with the GI doctor though, I’m not sure about how this will work in a less contained (i.e., “partialist”, as Dr. Dinosaur would say) context.

So.  Do I make a list?  I suppose I may.  I might also bring my handy “history of Dyspatient’s thyroid, rheumatological, and lyme bloodwork results” just for fun.  What I’m not doing is copying my entire record from 2002 (yes, I have it) and bringing it in.  It scares them.  And they don’t read it.  I will bring it by if this guy seems like a keeper.  And I’ll just have to trust that the doctor will give it a look through if he can stand to wade in.  Oh, if only the world of electronic medical records was here.  But that’s a whole other blog topic.

Well well (not not)

Here I am again.  Having taken a hiatus to find a real job in a really bad job market, I’m back.  I’m working full time – sometimes a 40 hour week, sometimes less, sometimes more.  My boss is insane (mantra is “she’s only interim….she’s only interim”) and had, within my first 6 months at work told me that I “look sick” and that I was “making myself sick”.  Fantastic.  Some months later, she was diagnosed with uterine cancer.

Before I go on from that, let me just say, this is going to be one of those times.  One of those “oh Dyspatient is really bitter.  How mean!”   I have to preface (further) by saying that I am not proud of this.

When my crazy boss – who has punished me by changing my sign in/sign out procedures because I had the nerve to advocate for restroom and food breaks at work; who told me that the other person who had my job just worked 12 hour days to cover what is an obvious and legal liability risking staffing shortfall; who made those disparaging remarks about me being sick (I didn’t bring it up, I got sick at work  prior to restroom and lunch coverage arrangements being in place and had to go to the ER) – announced to the staff that she had been diagnosed with uterine cancer, I did experience some moments of schadenfreude.

Yes, I’m a horrible person.  Yep.

Let’s see…I tried to catch up all that can be quickly summed up in my “About Me/About This Blog” section.  Some doctor stuff.  I’m living closer to a real city with big research hospitals.  Unfortunately, those hospitals seem to have a paucity of primary cares and my insurance won’t accept “rotating resident” from a clinic as a primary.  I had picked one who was local and fit a few of my preference parameters when I first moved up here – and I mean first, because while cleaning a glass and metal lamp shade in the days of unpacking post-move, I massively cut my finger.  It bled and bled and bled some more….finally after walking around with it wrapped in about a whole role of gauze, I went to change the dressing and it was still very actively bleeding.  So off to the hospital, which was covered by my old insurance with a big fat co-pay.  And then either back to the hospital some days later to have the stitches out (and another $50-otmy) or find a doctor who was in network for my NEW insurance (lucky me, I had insurance overlap!) who would take them out for a mere $15.

So I have this doctor now.  She’s a nice person I think, but not a great doctor.  She might be an ok doctor.  I can’t judge in those areas anymore.  I can judge shitty and great, but the middle ground is a place I just don’t dwell.  I tend to bring out the best or worst in them and I don’t think it’s just my affect.  How a doctor deals with someone with what is, unfortunately, a growing list of symptoms without identifiable causes (at least without primary causes) tends to be either really great or really bad.  And believe me, I’m pretty flexible on “Great”.  I’ll take compassionate, intellectually curious, thorough, advocating, educating, enduring, and with strong follow through even if there is no diagnosis at the end of it. Hear that doctors?  You don’t need to fix me!  I’d love it if you did but honestly, I’ll take helping me just get through the day to day without letting the ego threat of unknown causes and new symptoms turn you mean or dismissive.

Current primary has become dismissive.  She blew in and (tried to blow) out of that room like a whirlwind. I came in with a list of things to talk about – I knew I had this follow up scheduled so things that were problematic but not urgent, I just put on the list but I got to exactly one thing on it before I gave up on calling her back from the door. Truly, it was clear that she didn’t even read her own note for why I was there for the follow up she’d told me to schedule.  I left there feeling terrible.  And feeling very lucky to have gotten into therapy with a good psychologist, because I left with what I call the deep dark despair thoughts (D.D.D.).  So now I’ve got an appointment set up with another doctor.  Internal medicine/Infectious disease certified, good patient reviews, not as close as the one I’m leaving but if he’s good it’s worth it.  We’ll see.

Reliability does not equal predictive value

I guess because we’re in the midst of Lyme season here in the Lyme rampant states today I googled “lyme disease” + test + research. The second “scholarly article” return was this one which I found interesting enough to read in full text (and to follow several linked references to and from).

Klempner, M. S., C. H. Schmid, L. Hu, A. C. Steere, G. Johnson, B. McCloud, R. Noring, and A. Weinstein. 2001. Intralaboratory reliability of serologic and urine testing for Lyme disease. Am. J. Med. 110:217-219.
Article Outline
Laboratory testing for Lyme disease is controversial because of problems with test sensitivity and specificity, the lack of standardized reagents, and interlaboratory and intralaboratory variability [see article for hyper-refs]. We determined the reliability of a serologic test and a urine test for Lyme disease, each performed in a reference laboratory, in control subjects and patients with Lyme disease who had posttreatment symptoms.

Material and Methods
Study Subjects
We studied 10 healthy control subjects who had never had Lyme disease and 21 patients with a history of acute Lyme disease, as defined by the Centers for Disease Control and Prevention [see article for hyper-refs], who had chronic (>6 month’s duration) fatigue, musculoskeletal pain, or neurocognitive impairment despite treatment with recommended antibiotics.

Sample Collection
Serum samples were obtained from all 21 patients and the 10 control subjects. One aliquot was immediately analyzed; duplicate aliquots were frozen at −70°C and tested within 6 months after collection.

Results
Serologic Test
In all 10 control subjects, the initial western blot analysis yielded negative results. In three of four duplicate specimens analyzed, the same immunoreactive bands seen in the original aliquot were present; 1 duplicate specimen contained a 41-kDa band that was not present in the original aliquot.

In the 21 patients with Lyme disease, the results of the initial western blot analysis were positive in 14 cases and negative in 7. Analysis of duplicate specimens yielded identical results in all 21 patients (κ = 1.0, Table 1). The same immunoreactive bands identified in the first analysis were present in 7 of the 14 seropositive duplicate samples; 5 samples had 1 additional band, and 2 samples had 2 additional bands. Repeat testing of the 7 seronegative samples showed fewer than 5 reactive bands in all samples.

To sum, using the “five band” criteria, the test-retest outcome was great when we consider just the 10 control subjects. Moreover, one might conclude that a negative blood test reliably predicts/detects the absence of disease in a person who does not have the disease. Further, a positive blood test reliably predicts/detects the presence of disease in people with it. However, a negative blood test is not so great a diagnostic tool for someone with the disease. That is, there are false negatives among the 21 experimental subjects, 7 false negatives in both the test and retest conditions (- reliably). That’s one third of experimental condition subjects who tested negative twice despite being diagnosed with Lyme. How do our authors interpret these findings? In explicit terms, very narrowly.

Discussion
Our study showed that testing of duplicate serum specimens from 21 patients with Lyme disease and 10 healthy controls by a single reference laboratory using a commercially available immunoglobulin G western blot kit gave 100% concordant results for seroreactivity and highly reproducible results for the identification of individual bands.

Yes, the results were “reproducible”, thus the test is deemed reliable. What does this mean for practice? That is, should we extrapolate that the western blot is a good test for confirming (or disconfirming) a suspected diagnosis of Lyme Disease? The authors make a cited claim that “In patients with chronic symptoms of at least 6 months’ duration, the most appropriate serologic test for prior infection with B. burgdorferi is the immunoglobulin G western blot, which is recommended by the Centers for Disease Control as the final basis for determination of seroreactivity.” which, given its context in the publication, serves to link the reliability of the western blot with it being a good tool for diagnosis.

So I guess if you think you have Lyme, you’d better hope you’re not a member of portion of the population who may get a false negative test result.

For more (and quite interesting) reading on predictive value of tests as diagnostic tools (which is different from the reliability of such a test), search terms “sensitivity” and “reliability”. A nice overview of the topics as they relate to diagnostic testing is given in this piece by Tze-Wey Loong titled “Understanding sensitivity and specificity with the right side of the brain“.