Couldn't resist

This Onion clip which fit so well with recent posts about research and IBS-D.

'Cosmopolitan' Institute Completes Decades-Long Study On How To Please Your Man

foodless in CT

I have a meeting set up with a temp agency today and I thought it would be good if I weren't passing out in their bathroom. Hence, no breakfast for me this morning. I don't like skipping meals, it makes me irritable and lethargic but last night was horrible. I was about 10 minutes into dinner when I got massive cramping lower down. I stopped eating and took a bentyl (my first one). I ate a little more when the first wave of cramping subsided but my appetite finally gave up when the pain started again, and again. Within an hour I was in the bathroom drenched in sweat, huddled on the toilet, retching into the trash-can and hoping the whole thing would just get over with. I lose track of time when things get that bad - it felt like an hour but I think the whole thing lasted only about a half hour acutely. When it was over, I felt deflated, sweat-soggy, cold and shaky for the rest of the night. Times like that, yes I will happily take a Donnatal...well, a quarter of a Donnatal.

And this, in a nutshell, is a BIG part of why my life is so very small now. Even if it's not a bad day re: joint pain, fatigue, migraine, and endo/etc., you just can't go anywhere if experience indicates that any gut cramps might turn into those gut cramps. Oh I suppose I could go places and just not eat, however while the no-food strategy works for the duration of a job interview, it is not a practical option in most situations. So I prefer to eat and thus stay close to home or at home. Ideally, I also prefer to be able to take the medicine I need to help ensure that I at least won't pass out from pain when my gut is launching quasi-digested food into the toilet 5 to 8 times a day. But without the hyoscyamine, I'm stuck fiddling with new meds and hoping one of them (timed right and taken at a high enough dose) works right. For the rest of this week, I'm planning to premedicate with the bentyl (20 mg instead of 10) rather than wait and risk another one of those horrible episodes.

In the meantime, I present for your reading pleasure a relevant (for me at least) abstract.

Simrén M, Abrahamsson H, Svedlund J, Björnsson ES. 2001. Quality of life in patients with irritable bowel syndrome seen in referral centers versus primary care: the impact of gender and predominant bowel pattern. Scand J Gastroenterol. 36(5):545-52.

BACKGROUND: Quality of life (QOL) is reduced in patients with irritable bowel syndrome (IBS) and little is known about differences in QOL in relation to referral status, gender and predominant bowel pattern in IBS patients. This study aimed to explore these relationships. METHODS: 343 patients with IBS according to the Rome I criteria (251 females, 92 males) completed five different self-administered questionnaires to evaluate QOL. There were 119 patients with diarrhea-predominant IBS (IBS-D), 93 with constipation-predominant IBS (IBS-C) and 131 with alternating constipation and diarrhea (IBS-A). The study group comprised 209 hospital outpatients and 134 primary care patients. The questionnaires were mailed to the patients with an overall response rate of 88%. RESULTS: QOL was reduced in hospital outpatients compared to primary care patients, but only in females. IBS subgroup (IBS-D), physical fatigue and general health independently predicted referral to a gastroenterologist. Females had lower QOL than males. No differences, except in severity of diarrhea and constipation, were observed between IBS subgroups. Perceived fatigue was related to well-being, psychological and gastrointestinal symptoms. Independent predictors for fatigue were depression, trait anxiety, general health and vitality, along with eating dysfunction and female sex. CONCLUSION: IBS female patients seen in referral centers versus primary care is a highly selected group with reduced QOL. QOL in IBS is affected by gender, but not by subgroup. Our findings have implications for the generalizability of results in IBS trials. Fatigue is a common symptom in IBS that correlates to general well-being and psychological and subjective gastrointestinal symptoms.

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".

PEG

I'm having my second ever colonoscopy on Friday. Or I'm supposed to at least.

PEG is such an innocent sounding word. Reminiscent of what is at the moment a sort of ironic song, or an ironic bit of lyrics. "Peg, it will come back to you..." And indeed, it may if what might be coming back (up) is your clear liquid dinner.

Really, it should be PEIG, which stands for "Plastic-like Emesis Inducing Gunk". Why a PE(I)G prep? Why indeed.
From EndoNurse
In a recent attempt to assess which bowel preparation agent is most effective, researchers conducted a meta-analysis by pulling studies that were published between January 1990 and July 2005.2 The meta-analysis discovered that sodium phosphate (NaP) was more effective in bowel cleansing than polyethylene glycol (PEG) or sodium picosulphate (SPS). Patients showed more difficulty completing PEG than NaP and SPS. All three were comparable in terms of adverse events, with PEG resulting in slightly more adverse events than SPS. NaP resulted in more asymptomatic hypokalemia and hyperphosphatemia than the other two, leaving the researchers to conclude that “the biochemical changes associated with a small-volume preparation like NaP, albeit largely asymptomatic, mandate caution in patients with cardiovascular or renal impairment.”

I have no cardiovascular or renal impairment. So, ummm, why am I getting the PEG prep? My theory is that I am getting the prep which is standard when the clinician assumes the patient is likely to be overweight, hypertensive, and possibly older (male). Sorry if that sounds mean. Any hostility comes from my irritation that male is still too often the medical standard, and I have some issues about which populations are sampled and then generalized to in research in general.

Anyhow, I'm not in that set - the set being people who you should give a crappier prep to because the crappiness of the prep is overshadowed by the need to not pump this person full of salt. I'm a skinny, hypotensive mid-thirties woman who fills up so fast she usually can't eat a whole meal at a time and who has a history of low Na levels.

Is this an example of one size fits all medicine or does my GI doctors office know something they should perhaps share? I'm too tired to push the issue. I'm going to try to get this shit down and keep it down, but if I end up not adequately prepped because my doctor's office insisted on a crappy prep for crappy reasons I'm probably not going to be feeling terribly compliant...at least not for a little while since I already asked once "er, do I really have to do the PEG prep?"

My prep instructions tell me that "if vomiting persists, stop the prep and call our office for instructions". When my GI's office calls back about the Donnatal/anticholinergic/antispasmodic issue, I'm planning on asking exactly how many times a person must vomit before we consider it to have persisted.

strong

I fell asleep in pain and I woke up in pain. Because I'm currently unemployed (going on two weeks now since my last job ended), it wasn't as big a disaster as it could have been. However, to say that it gave me pause to be in such pain right now would be an understatement. I didn't want to stay in bed because being unemployed is freaking me out enough, evoking the questions of how employable am I? E.g., would I be able to do a corporate training job which otherwise sounded exactly like something I can do and would enjoy doing but for the fact that the job description says I must be able to lift and/or move up to 25 pounds...with or without reasonable accommodations?

The negative effects of acutely experiencing the aspects of my physicality which prompt such questions in the first place would be worsened by feeling like I had to spend the day in bed. And for me, when I'm already worrying about my limitations, spending even extra hours in bed starts to feel like the dread practice of spending the day in bed. And so I got up and crept out into the kitchen. I sat on the floor to feed the cat (can't bend over) and then stood up to make myself a cup of coffee. I did all these things because this is normal. Coffee, food, showering, getting dressed. This is what I'd need to do on a normal work day, and if I can't do them today, does that mean I can't do them reliably enough to be employed on a regular work week kind of basis?

As you can probably guess from my tone here, this little plan of mine ended badly. After having A___ help me get back in bed (and get the requisite cold wet cloth for my head - don't laugh, it does work when I'm feeling "faint", for lack of a better word*), I took some donnatal which has been sitting untouched in my drawer for the better part of a month. I'd rather not be taking but the current distribution problems with hyoscyamine have made my preference a moot point. The donnatal knocked me out pretty good. I slept for another two hours. This time, I woke up in less pain but feeling emotionally unwell. I'm frustrated and I feel less hopeful too. I couldn't shake thinking that if this had been a work day, I'd be looking at a really shitty decision - call in and risk looking bad or go in and risk passing out (at a desk or - my personal least favorite - in a bathroom).

It's situations like this morning's pain crescendo which tend to push me to preemptively limit myself. I.e., feeling bad? Ok, so don't get out of bed. Call it a "bad day" and try to take care of myself so I don't turn one bad day into many. This attitude though, or maybe it's more of a practice...how about "practitude"? This practitude is not without conflict. The conflict and attending negative feelings arise when I am faced with feeling the need to do what I believe (empirically) is best for me physically but which behaviors are considered by our social standards (and myths, and principles, etc) to be self-disabling. As much as I'd like to think I am a self made person, I cannot deny that it seems I have internalized some of the social bullshit about illness. Maybe, to cut myself some slack here, it's not so much internalizing as it is simply awareness of these attitudes and how they will be applied to me. I have been (casually and not so casually) judged for engaging in preemptive "self-disabling" behaviors in the past and so maybe now I just have been conditioned to be hyper-aware of them.

I dunno. I'm thinking it's more the former, the internalization thing. I think this is more plausible and one reason I believe this is that I wasn't always a chronically sick person. I wasn't always as limited as I have been in the last 6 years and so this means I was in fact one of the people who probably judged others. Let's see....have I? Hard to know. The lens of the present quite reliably distorts attempts to get a view of the past.

Well it's something to think about anyway. How to deal with my conflict has lead me to some research. I just ran across a paper called "Health Psychology: Psychological Adjustment to Chronic Disease" (Stanton, Revenson, and Tennen 2007) where some aspects of the struggle I'm talking about was summed up quite nicely.

Adjustment is most commonly defined as the presence or absence of diagnosed psychological disorder, psychological symptoms, or negative mood.

Unbalanced attention to positive adjustment can also have untoward consequences. The expectation of the unfailingly “strong” patient permits the ill person little latitude for having a bad day (or a bad year). Presenting a positive face may become prescriptive, so that one falls prey to the “tyranny of positive thinking” (Holland & Lewis 2000, p. 14) or the notion that any distress or negative thinking will exacerbate chronic disease.



* = I'd like a better word since "faint" doesn't distinguish between that shitty but rather benign low blood pressure moment upon standing and that sweat drenched, gagging, nightmarish feeling thing that happens when I am going under completely.

Where's my lollipop?

Or, "A long ranty rant about medical insincerity by someone who is likely a bit dopamine depleted"

I've been thinking about some of my least favorite contradictions in medicine and health perspectives. I suppose these could be called hypocrisies, but I feel this term implies belief which I am very reluctant to attribute. Contradiction, I think, as a word is more neutral on the existence and legitimacy of beliefs underlying the observables I am reacting to.

A recent round of Lyme related news items in the mainstream press as well as my own attempt not to smoke this week (been 7 days without) have brought these contradictions to light.

Let's take the smoking first since it's a shorter rant, er, argument.

I pay taxes on my cigarettes which are meant to discourage my smoking (supposedly). I'm not allowed to smoke in most places, or sometimes even near places. Again, that is meant to discourage my unhealthy habit. There are companies which are charging smokers extra fees on top of the employees' contributions to cover their premiums, the reasoning being something like this: In the case of smokers, companies and their advocates say it's a matter of promoting health and of fairness, given that smokers, as a group, generate higher costs for employers through direct health care expenses and lost productivity. 'It's an equity argument,' said Helen Darling, president of the National Business Group on Health. 'Part of my costs going up is because of the behavior of other people.'" (Spouses, Smokers Earning Penalties - Hartford Courant, 10/14/07)

I accept the reasoning behind these rationales. I don't know that I believe they are what is truly the driving force for some policies and behaviors, but I at least accept the stated reasoning as sound. What I wonder though is where's my state subsidized lollipops? Where's my insurance coverage for smoking cessation therapy, devices, assistance? The funding could come out of the massive sin taxes I've paid for the last 10+ years I've been a smoker. So the government, my employer, and my insurance companies want to encourage me to quit smoking so much so that they will charge me extra for continuing to smoke. But they are unwilling to put anything INTO helping me stop smoking. I kinda think if someone wants to regulate what legal, addictive substances people do and where and how they do them, those someones had better be willing to pony up when the miserable addicts try to comply.

And then there's Lyme. This one can be summed up as the logical proposition - It's not Lyme or you're crazy. This is the diagnostic choice you will face if you have Lyme Disease and you do not feel well after 3 weeks of oral antibiotics. The contradiction lies in the statements of compassionate skepticism espoused by various champions of this proposition.

Over at the Hartford Courant, my local but not very good news paper, some fellow has written these four articles in the last 2 weeks.
Debate Deepens Over Lyme Treatment
Study Casts Doubt on Lyme Disease Treatment
Lyme Disease Diagnosis Challenged
No Basis for Chronic Lyme Disease

Reading them, I find myself wondering if the writer was spawned in a lab by a mad scientist who had obtained genetic material from both Jerry Springer and Geraldo Rivera. This would explain so very many things, not the least of which is the author's apparent grudge against science and even a sheen of objectivity.

While I'd like to think the reporter is guilty not just of perpetuating but also of fabricating the disparity between the "sides" of the controversy, I know he is not. The phenomenon at the heart of the controversy comes down to a poorly defined yet nonetheless associated set of people (or as they are less humanly called, "presentations" or "cases").

- Some people diagnosed with Lyme Disease do not get better after the accepted, recommended minimal treatment, a 3 week course of oral doxycycline.
- Some of these people's diagnoses were based on symptoms, signs, and labwork which meet even the rigid surveillance criteria (as well as the less rigid clinical/diagnostic criteria).
- Some of these people's diagnoses were based on signs, symptoms, and labwork which meet clinical criteria accepted by most main stream doctors and medical providers.
- Some of these people's diagnoses were based on signs, symptoms, and labwork which meet the clinical criteria accepted by only some doctors (often called "LLMDs" but that category is another catch all).
- Some of these people were diagnosed and treated soon after the probable time of infection.
- Some waited years be diagnosed and treated.
- The types of symptoms all of these people continue to experience post treatment fall into roughly three categories (skeletomuscular, neuro/cognitive, constitutional).
- Some people report overlapping classes of continuing symptoms post treatment.
- Some people report only one type of these continuing symptoms post treatment.
- All of these people are grouped as a single population when placed in the context of the highly divisive and divided Lyme Controversy.
- By the Chronic Lyme people thinking, all of these people are actively infected with the bacteria which causes Lyme disease and will get better with more or the right antibiotics.
- By the anti-Chronic Lyme people thinking, all of these people do not have Lyme Disease. Further, some (perhaps many) never had it.

It doesn't take a genius to know considering only the parameters of this population that the set of (dubious) chronic Lyme patients is hardly a homogeneous group. Then one must consider the heterogeneity of treatment among any super or subset of that population (i.e., Who got IV antibiotics for 21 days? 28 days? Which antibiotics? Who got more than one course? Who got 2 months of oral antibiotics? 3? 4? Do I hear 5?) .

Clearly there is an impossibly confounded bundle of factors in treating this group and their complaints as any thing like an even functionally defined set. Moreover, you'd think it would be equally obvious that any conclusions made based on some just can't be legitimately extended to all. And yet they are. That's part one of the contradiction in the Lyme Controversy.

Part two is what happens when anyone who falls into that poorly defined group seeks medical attention for what ails them. The mainstream reasoning is that these people do not have Lyme, BUT, goes the mainstream reasoning, we are not dismissing their symptoms. We are just saying it's not an active chronic Lyme infection causing the symptoms. BUT we won't develop or advocate research protocols and plans to see what IS causing the symptoms. And many of us will toss you out on your ass if you have the temerity to continue to come into our offices complaining of feeling "tired all the time" or "achy all over" or "foggy" after we have issued our "it's not Lyme" proclamation.

I'll buy the argument of "it's not an active infection" for me and people who have very similar histories to my own. I will buy it for the sake of argument and, for myself given my family history of autoimmune disease, I'll buy it even for the sake of medical practice.

What I don't buy is that the mainstream, anti-chronic Lyme people actually believe that the set of people we are calling here the (dubious) chronic Lyme patients have anything physically wrong with them. If that were a sincere and genuine belief on the part of the practitioner, these patients wouldn't be turning to any number of alternative or non-mainstream and sometimes quite dangerous treatments. They'd be taken care of by their own mainstream medical providers. If it were a sincere and genuine belief on the pat of the researcher, I'd be seeing calls for research participants for autoimmune studies on people with a documentable history of past acute Lyme infections. I look. Believe me. I don't see those studies.

In short, if the "there is no such thing as chronic Lyme" declaration wasn't equivalent with "and you sick people aren't really sick", we'd see at least some research on what is causing some of these people to get sick and others of these people to stay sick.

Hey, if you see that, you let me know. Also, send lollipops.

A timely article

Since I was just writing about compliance (to medication regimen), Medea, and Large Marge, this seems to be an appropriate reading for the day. I'm supposed to be writing a lecture on hypothesis development and testing, but ow.

And my attention is less than razor sharply focused.

I've gotta say, after looking over the abstract, I find myself quite curious about the "pictorial blood loss chart" used in this study.

Also, I can't help wondering - where's the imaging man? Here I am looking at stuff on muh-muh-muh-My Mirena (see, it's not just the Macarena it fits with - it's a quite musically handy word) and finding a long term study on side effects of the blasted thing and it seems they didn't collect data on ovarian cyst formation in women using The Device.

Can I get a hearty wtf?

occupied

Thank you to Catherine at Women 4 hope who listed No Harm in her five new blogs for Blog Day which I missed hearing about entirely due to my complete self absorption at this time of year. Classes started last week - earlier every year it seems - and I start teaching this week. My blogging here has been slim while I've been prepping the course material. I'm really hoping to steer some of the students towards a health-psych project since it's a field which is gaining popularity, it's a new program in my department, and it is truly interesting. There's even been some high profile news stories in this general area, such as the report on the study of implicit bias effects in doctors' treatment recommendations for chest pain patients in the ER.

There's only so much you can cover in a short intro research course, which means most of the really interesting stuff is out. Still, the last time I taught it I had a group of young women who did a very nice project on students' attitudes towards mental illness and the effects of positive or negative portrayals of mental illness (and the mentally ill) in the media. Theirs was the best design and had some lovely, interpretable, and interesting results. It's always gratifying to see the students pull off something like that given the constraints of the course (which are considerable, believe me).

On the bright side, at least this year I was reminded in time to celebrate Talk Like a Pirate Day on September 19th (thanks to Bubblewench).