anti-neural antibodies anyone?

I think I may make copies of this and start handing it out to doctors.  Maybe send a copy to that monumental d-bag I briefly tried as a primary care so many years ago in the New England Outback.  This is the one who made a point of telling me “I don’t BELIEVE in chronic Lyme” at my second appointment when I complained of fatigue, eye pain, new joint pain, headaches, and memory problems 4 months after treatment with oral antibiotics for an acute Lyme infection (btw, his mention was the first time I had heard the term).

You know what?   I amgoing to send it to him.  Because it so nicely calls out a particularly obnoxious fallacy, a

image of an "EM" rash typical of lyme disease on a woman's torso

Dyspatient's big fat EM rash. An objective sign of Lyme Disease, until it's faded. File under: "why you should always take a picture"

pseudoscientific belief system dressed up as science because of the class of people who tend to hold and wield it (i.e., those engaged in scientific disciplines/professions).  The “reasoning” of this fallacy goes:  there is no evidence (which I accept) for the existence of this, therefore I will deny the possibility or question of its existence.    Therefore I will deny any attempt to address the cause for it.

The “which I accept” part is the lynch pin of the fallacy.  What one person – doctor, teacher, cashier, or plumber – will accept as real, legitimate, existing, is too often an intangible and mutable mark, arguably as subjective as symptoms like fatigue and nausea.  Think of all the debate over when life begins or ends…we have doctors and theologists and “the rest of us” who have weighed in on this question of existence for as long as we’ve had a discernible existence and not only do we not have an agreed upon answer but we still don’t have good, broadly accepted parameters for the question of what “counts” as evidence and what doesn’t.

When viewed this way, it is clear that what is contended as various scripts from the lyme disease controversies are played out in various doctor’s offices is not a case of this theory vs. that, or the validity of a particular hypothesis….

    like patient s/p acute lyme infection continues to report symptoms.  Is it possible that the acute lyme infection has created some (continuing) pathological state?  If so,  H1:  continuing/chronic lyme; H2: immune response to lyme infection;  H3: effect of treatment for acute lyme infection; etc.

…because all of those hypotheses, hell ANY hypothesis is inconceivable if you will not accept that there is evidence, i.e. if you refuse to accept the existence and validity of the symptoms reported by the patient.  And so what it comes down to is that what is contended is not scientific and not medical.  It more properly falls into the domain of morality and ethics.  It is the validity of one person’s subjective experience over another’s, in this case based on socioeconomic factors.  And when a person’s well being and suffering is on the line, it is one of the worst kinds of misapplications of reason and pseudoscience that I can think of to allow such factors dominate.

Lengthy preamble, I know.  I plead lack of caffeine and a three day long battle with a tenacious touch of migraine.

On to the abstract.  Full text is linked to the title.

Brain Behav Immun. 2010 Aug;24(6):1018-24. Epub 2010 Mar 18.
Anti-neural antibody reactivity in patients with a history of Lyme borreliosis and persistent symptoms.
Chandra A, Wormser GP, Klempner MS, Trevino RP, Crow MK, Latov N, Alaedini A.
Department of Neurology and Neuroscience, Cornell University, New York, NY 10065, USA.

Abstract
Some Lyme disease patients report debilitating chronic symptoms of pain, fatigue, and cognitive deficits despite recommended courses of antibiotic treatment. The mechanisms responsible for these symptoms, collectively referred to as post-Lyme disease syndrome (PLS) or chronic Lyme disease, remain unclear. We investigated the presence of immune system abnormalities in PLS by assessing the levels of antibodies to neural proteins in patients and controls. Serum samples from PLS patients, post-Lyme disease healthy individuals, patients with systemic lupus erythematosus, and normal healthy individuals were analyzed for anti-neural antibodies by immunoblotting and immunohistochemistry. Anti-neural antibody reactivity was found to be significantly higher in the PLS group than in the post-Lyme healthy

Copyright 2010 Elsevier Inc. All rights reserved.

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Vacation

I have done very little on my winter vacation.  I have watched movies, cooked and baked, entertained a few guests, had a manicure and a massage, and mostly…

photo of a woman on a couch with a tabby cat

...relaxed

Merry christmas to me

I have this week off.  Last week, I had a “work at home” week since the facilities folks decided to paint the interior of our building without any notice to the four staff member still working there last week.  Day one was headaches, sore throats, and stinging eyes from the fumes.  Boss came back from a meeting to a building full of fumes and all the staff but me gone and said “Please, feel free to work at home until this is done” and so I did.  Very nice.  This week, I am home and sans responsibilities, work-wise at least.  At some point, I will clean for company who are coming tomorrow afternoon.  But since most of them won’t be staying here and since I just did a “big clean” on Saturday, I’m not going to stress over this too much.

So today I have booked a manicure and a massage.  Ahhhh…..just what I need.  If I can stand braving the after christmas mall, I may also stop in for a threading session.

Man, it’s nice to have time off.  I can finally get to some of the personal maintenance things I usually have to back burner (repeatedly) during the work week.

oh brother

First off, let me say that I hope the holiday season finds you better than not.  It’s a stressful time of year – lots to do whether you’re traveling or hosting:  navigating practical details and the expectations (and biases) of family and friends, both tending to be difficult for people whose resources are already pretty much taken up by the smaller spheres of our lives with chronic illness.

My holiday celebrations have grown quite minimal, and I am realizing that the more circumscribed they get, the less I hate christmas – so that’s a pro.  We had a tree, we have an anniversary – our current kitty came in from a snow storm on christmas day of last year (spent the night in our basement and we didn’t have a tree last year so this was her first “real” christmas with me and my husband).  She got a stuffed animal/bird that chirps.  A lovely red robin.  So far all she’s done with it is rub her face on its beak.  photo of a small christmas tree with a cat walking in front of it.

I made cookies.  That was my one nod to the ghost of manic christmas past.  I called them “christmas bribes”, most of them going to my primary care doctor since the guy and his nurses have been pretty damned good this year.  The admin staff, well, I am not super happy with them but it seemed like too much to write “merry christmas to everyone but that bitch who gave me such a hard time about my workplace accommodation forms at thanksgiving…”  It’s the thought that counts, right?

Christmas day we had my brother over.  For dinner.  “I’ll be there at two” turned into “I’m running an hour late,” and then into a text message at 3:30 saying he was running a bit more late and would be here at 4:00.  I’ll spare you the suspense of the entire phone and text saga and just jump to the punchline:  he was here at 6:30.    When he got here, I could tell he was spinning a yarn about what held him up.  I have no idea what the real story is and wasn’t in the mood to ask.  I’d spent the two previous days fighting a stubborn migraine and just wanted to eat before it was so late that I’d be up all night with heartburn.  Plus, my sister and I are still not talking and I try to keep it to one catastrophic familial estrangement per calendar year.  So I let it go.  Merry Christmas little brother – my silence was a big part of your present this year.   He stayed late today but spent the last two hours of his visit half-way out the door, packed up and ready to go when he finished ranting about work.  It truly is a stressful job.  He works with surgeons at the granddaddy of all B.A.T.H.s.  Ranting done, he used the bathroom one last time…and clogged the toilet and flooded the bathroom.  “Where’s your f***king plunger!?” he said as he burst out of the bathroom doing up his pants.  He proceeded to berate (in a “don’t take this seriously, I’m just kidding, sort of” way) me and my husband for our too-soft/too-thick toilet paper, clearly the reason why the toilet clogged.  And this, dear readers, is why I feel TWO bathrooms are a necessity for more than two adults in a home.

This week, I am off.  We are having a chunk of my husband’s sibling set up to visit.  His half sister, his brother, and his brother’s wife.  In the negotiations of this visit, we said we could go down there to visit or offered to have them up.  Brother said it was fine either way, and then said if we came down we could go do this and that and that and the other thing with all these friends from college that are always dropping by at his place.  Ugh.  And one bathroom.  No thanks, so we decided that we’d rather have them up here if it was all the same to everyone.  Which they’d said it was.  And then it wasn’t.  I.e., after agreeing to come up, brother in law tells my husband that he and his wife might rent a hotel room since our cigarette smoke bothers them sometimes.  Between my husband and me, we smoke about one pack a day, less when company’s over.

Ok.  No mention that the last time brother in law was up he stunk up my place with cigars.  Nope.

Husband says ok, his brother asks him about close-by hotels (they’ve stayed at one before when we were living in our tiny first apartment in this area).  Husband tells him the closest is the one they stayed at before.  And that’s the end of it, until two days later when my husband is talking to his brother and his brother tells him that they found a cute looking place up in XXX, which according to Google maps is only 26 minutes away.  Now, XXX is on the other side of the major city of which our city is a suburb.  We are to the south, XXX is to the northwest.  It is congested.  It is NOT 26 minutes away, not by a long shot.  It’s 40 minutes in good traffic.  Keep in mind, this is a quick one night visit, so brother in law and wife staying so far away is going to eat into a significant portion of visit time.  My husband was pissed.  See, there’s a history of his brother doing what we call “add on” visits.  As in “Sure, we can get together.  (Wife) and I have plans to see 5 different sets of friends from college who happen to live in the same state as you and I have a work meeting up there next week so we can squeeze you in!”  Yeah.  You can’t win with these guys.  Either you go stay with them and you’re living in what is sort of like a nicer, more grown up frat house or you have them up and you’re the intermission in a much more exciting and high priority set of social engagements.

Tis the season to be…irritated.

My husband suspects his brother and sister in law chose their hotel based on some other plans they tacked on to the visit.    If they did, I’m sort of done with them.  Not like I won’t speak to them again but like I’m not going to feel bad about asserting my priorities and not going to knock myself out to find ways to compromise for their priorities.  If their social commitments are ranked so high in group plan making, then why would I ever feel bad about ranking my health and physical conveniences as important factors for me?

laws, sausages, and accommodations

I don’t make accommodations, but I provide them.  That is, I am not the “decider” on who determines what and why based on documentation But I work with the person who is, and I am on a few professional lists where people discuss the what and why.  Thus, I’ve seen behind the curtain and I know that the people in such positions can be, well, people.  That is, they bring their crap along, ignorance, baggage, assumptions, attitudes, the lot of it.

It is with this knowledge that I approach my own submission for accommodations at work with a bit of extra trepidation.  For example, one recent post on a professional list complained that the request from the (let’s say) client and the documentation from the physician were too similar in wording, that the client had dictated the documentation to the doctor.  And I am wondering, should I dumb the wording in MY part of my request down to keep my HR department from thinking something similar?  I’ve done a bit already….instead of “exacerbates” I change the syntax of the passage and use the phrase “makes worse”.  Instead of “hypotension”, I say “low blood pressure”.  The truth is that I wrote the health condition/disability descriptions for my doctor’s office and they read them (at their leisure) and signed off on them without a single change.  They asked for them like this… “one form filled out and one blank in case he (the doctor) wants to make any changes”.  And he didn’t.

But tell me, if we didn’t do it this way, then how were we supposed to do it?  It would have taken at least one appointment, one long appointment, to put this together for me.  I don’t have ONE all explaining diagnosis.  I have several sets of symptoms that can be debilitating and for which I need accommodations.  Is there even a billing code for this sort of appointment?  So I wrote it up, the best I could, using the correct terms for what I experience…like “orthostatic intolerance” and “migraine with vestibular symptoms

So I’m changing my own wording to make it sound less medically in my request form because I’m worried  that if my form and my doctor’s form read too similarly, it will make ignorant people question the validity of my request and/or documentation.

Silly?  Yes.

Degrading?  Yes.

Necessary?

How it helps

My second semester teaching, a student’s mother emailed me to tell me that her daughter had been diagnosed with acute appendicitis and was recovering from surgery.  The student, when she returned (which was rather promptly) was very responsible about getting in touch on making up work she missed, but was clearly overwhelmed.  I talked with her about it and it seemed that some of her professors were being a bit turdish about her missed classes and assignments.  We came up with a plan to get her work for me under control with a timeline based on what she and I both considered reasonable.  I ended up substituting some in class work with different assignments that she could do independently from home/dorm.  I now know that what I was doing is called a “modification” under disability accommodation processes.

Several years later, another student was identified to me as a “student with a disability” by our office of disability services.  The nature of the disability was not disclosed (as is proper) but the accommodation of “extra time on quizzes, tests, or exams which can be taken with you in class or at our office” was listed.  The student opted to take them in class, and I restructured the lesson plan on test/quiz days to do the assessments at the end of class to avoid the awkwardness of everyone sitting there done while one student kept working on the test.  Despite what I thought was a good effort with my class in promoting an open and respectful atmosphere, this student started acting out in class during lecture.  He postured and made snide remarks during my lecture.  When he started in on another student (who was, yes, that person who always has her hand up with a helpful or insightful comment), I told him to meet with me after class.  I asked him what was going on, why he was being so mean and crabby.  “I can’t see the damned slides” he said at one point, and the note taker had been flaking on him, not providing notes in a timely manner.  I had switched recently from lecture only to lecture plus powerpoint and it seems that the nature of my student’s disability was visual.  “I can see things if they are near and big with a lot of contrast” he told me.  I was thunderstruck.  Why hadn’t the disability office given me better guidance?  What the hell was the deal with “extra time”?  This kid could do tests, quizzes, and exams in a normal amount of time with half the frustration if I just pumped up the font size!  And I could do handouts, one slide per page, for when I was presenting by powerpoint.  I asked him if either or both of these accommodations would help and he said yes.  To avoid the class seeing him getting the powerpoint packet and wondering about “special treatment”, I made handouts for everyone.  This is called “universal design”.

I am not certain I would have been as willing or sympathetic to these students needs if I hadn’t been struggling with an invisible disabling illness myself.  And I now tell people, when I’m feeling open enough to discuss this sort of thing with them, that of all the shitty things that come of being sick, this is one of the few ways that it has helped.  I had a personal reference for empathy with these people, which I think helped me in making what aspects of their educational opportunities I controlled be more accessible.

Done!

I got call from the RN at my primary care’s office yesterday: they finished the workplace accommodation forms!  Woohoo!

reaching out

Another week of frustrating, dead end communication with my doctor’s office was wrapping up Thursday night.  I went to therapy and discussed it with my therapist.  “I don’t think I can talk to that secretary again without getting ugly,” I told her.  “Right, you can’t do that.  Get ugly I mean” she said, “What is it that you want to say to her?”  I asked “Want to say to accomplish the goal of getting my accommodation forms or want to say because I want to say it?”  So we took some time to address what I’d say if I could out of my system, then she suggested that I leave a message for the doctor.  “I’ll just get turfed to the nurses’ station or the office manager” I told her.  “Could you send a fax?” she suggested.

I had been thinking of doing that and so a plan was made.  My therapist framed a certain way of putting things to my primary on the whole dicking around with the accommodation forms issue.  “Let me write that down…that’s good. I want to say it like that” I told her as I dug through my bag for some paper.

And so I wrote a letter and faxed it.  And I got a call a few hours later from the nurse asking some follow up questions on the form which they were (finally) working on.  “When did the disability start?” she asked.  “Yeah, I left that blank because I didn’t know what to put.  These are chronic things, I mean the migraines started when I was in my 20s but turned constant in summer 2010.  The overheating started in 2009.  The diarrhea started in 2004.  The joint pain after I had lyme disease in 2002…”  She told me the earliest they could write was when I first started at his office.  “Ok, then I guess put that.” I said.  “I’ll call you back if I have any other questions,” she said.  “Um…when?  Like next week or like christmas?” I asked a bit sharply.  “Today or Monday,” she said.

Alright. So concrete days, a plan perhaps?  Too bad that this didn’t happen in time for me to have these accommodations for work during the busiest time of the busiest semester.  Guess I’ll just have to get through the best I can and hope I don’t get fired or take a knock on the attendance or “plays well with others” front.  (“plays well with others” is the heading I put on things like people coming in to my work area and turning the heat up because they think it is cold, me reacting badly when people interrupt my lunch break insisting that I stop eating and attend to their non-urgent issues).

Here’s what I wrote in the fax:

Dear Dr. (PCP),

I’m hoping you can help me with the workplace accommodation forms I had dropped off at your office on November 3.  At that appointment, I had discussed the forms and their processing with (RN) and she had indicated that they should be able to be done by December.  However, since late November, it’s been a real struggle to get information from the office about whether any feedback is needed from me, and if and when I can expect to move forward with my request for accommodations at work.   It would be so helpful for me to have these forms completed and returned so I can submit my request to my human resources department.  Would it be possible for someone knowledgeable about the status of the forms and a realistic timeline for their completion to call me to discuss this?  I will be available at my cell phone number xxx-xxx-xxxx any time Friday 12/9 through Monday 12/12.  My availability is more limited due to work constraints next week between 12/13 and 12/16 (i.e. I will be reliably available only after 8:00 PM 12/13 – 12/16).

Thank you,

Dyspatient

should I stay or should I go?

Wrist pain resolved.  After hurting like hell for a week, I woke up Saturday with it killing and then, slowly bending and flexing it to try to work out the stiffness there was a tremendous POP! and now it’s better.  Which makes me ask “should I cancel my doctor’s appointment for today?”  There’s still some tenderness in the palm side but nothing like before.  So do I go to my appointment on the basis that the week’s worth of wrist problem caused me to miss doing some tasks at work (long story, not tasks I normally do but stuff that someone who is in a position to make my life shitty wanted me to do) and having a doctor’s appointment behind that might help?  Do I go because I don’t have those accommodations in place to protect me from being negatively evaluated for not getting to this wrist-wrecking work this week, and to also inquire *in person* about those accommodations?  Is that ok?

Truth be told, I’d rather not go.  I’d rather not spend several hours there at the end of the day at the start of a busy work week.  I’d rather come home and eat dinner with my husband before 8:00 PM and play with my cat.

too much to ask for?

I had my follow-up appointment with the gastroenterologist today. It did not go very well. Not so much because of G.I. stuff, but because after telling me that my scopes and bloodwork and other lab tests were fine (with the exception of some fundic polyps in my stomach, most likely the result of long-term PPI use), she went on to discuss the endocrine approach and how that was going.

animated diagram of head showing colors for progressing migraine pain

Progression of headache right side...should animate if you open in a new window

How that is going is I keep trying to do a caffeine fast to do a 24 hour collection to rule out or not carcinoid, and failing due to migraines. This weekend, a blistering headache woke me up in the very wee hours of the morning. I went back to sleep, and woke up several hours later with exactly the same headache. On Monday evening, I had what is sometimes called a “silent migraine” – that is everything but the pain. That lasted through Tuesday…all day Tuesday. Wednesday was marginally better, but I really think only because I clobbered the hell out of it with my migraine meds at the very first twinkling sign of a migraine. This is typical. This is my brain, my vascular system, my particularly problematic physiology. One term for this is “chronic daily headache”.

And so the most recent caffeine fast ended. Oh did I mention that my migraine medication has caffeine in it? I’m not sure if I mentioned it here but you know who I did mention it to? The endocrine fellow. And today I “re-mentioned” it to the gastroenterologist. “You really need to try to do that,” she said.

Let’s back up.  I had gotten to the GI appointment early, but not too early.  Early enough to wander through the B.A.T.H. at my usual snail’s pace, find the atrium that’s down the hall from the GI clinic, and call my primary care’s office to (a) return the call they made to me this AM about (re)scheduling an appointment for a suddenly and acutely sore right wrist (using dictation software again…good thing I have it) and (b) ask again about the workplace accommodation forms I dropped off a month ago.  Two calls and not much progress with them later, I tucked away my phone and ambled down to the gastroenterology clinic. There, I waited I waited and waited and waited… Got checked in, filled out paperwork (with sore wrist on dominant hand, started at work Monday, can’t see primary until next Monday), and waited. After about a half an hour I was called in back. Where I waited some more. All total, about an hour of waiting.

I believe that all of this is important for understanding the mood that I was in when the gastroenterologist “reminded” me to do that 24-hour urine collection for endocrinology. After I explained to her the problems I was having with the caffeine, she made the mistake of saying that maybe we didn’t really need to do it. “I mean if you had that you have really bad flushing and profuse watery diarrhea…” “Yup! That’s me. That’s what I’ve got. That’s why we’re doing it,”. It was at this point that I found myself having a difficult time controlling my emotions, or rather controlling my emotional display. “When you really should do it,” she said.  I tell her I had done a 24-hour urine collection for my primary care, and that collection had yielded an elevated Chromogranin A level which the endocrinologists dismissed. I tell her why bother putting myself through the headaches of caffeine

animated diagram of head with colors mapping progression of migraine pain

Progression of headache left side...should animate if you open in a new window

withdrawal which I can’t treat with my headache medication because it also has caffeine in it to do another 24-hour urine collection, the results of which the endocrinologists are just as likely to under interpret as they did the original 24-hour urine collection ordered by my primary care.  We had a brief discussion while I was putting on my coat about whether or not I should try a new endocrinologist. She says yes, I say why bother. She says this is not a good attitude, not the right approach to have, that she understands that I’m frustrated – I interrupt and say I’m not frustrated I’m ground down, I’m eroded. She tells me not all doctors are the same. She tells me some doctors do miss things. She tells me that maybe if I find another endocrinologist and that if they tell me that everything’s okay maybe I’ll believe them.

See she was doing pretty good in the middle there, right up until that “maybe you’ll believe them” part. By doing pretty good what I mean isn’t that she had me convinced that everything would be fine if I try a new doctor. I know more than she does about the subject, the subject specifically being what it feels like to be me in this situation. I mean she was doing pretty good at being nice about a shitty situation that she’d sort of stumbled into (the endocrine fellow’s “well, just TRY” advice when I had told her that I was having a hard time not having caffeine with the headaches wasn’t the GI doc’s fault…she just accidentally stepped in it)

While I was on the train platform waiting to go home, the nurse for my primary care’s office called. She tells me that she gave the doctor the workplace accommodation forms before Thanksgiving but that he hadn’t signed them yet and she didn’t know why. I asked if it would help expedite things or make a difference to know that I was really catching a lot of shit at work right now about some of the things I had hoped the accommodations would help with. She said that everything had looked fine with the forms so she’s just going to tell the doctor that she thinks he should just sign them and send them back to me.

I guess what I’d like, what I would’ve liked, some fucking empathy. I mean some expression of fucking empathy. I don’t think that’s too much to ask for.  There was some from the GI doc, but followed with a little invalidation chaser, which makes it a little hard to feel good, or at least less bad.