Hey I just ran across a great section of what is looking like a pretty neat site, IBS Treatment. The section I came in through has patient reviews of various IBS drugs, with both an American version and a UK specific listing. The latter is a bit small, and I don't know if this reflects a true low number of UK specific IBS drugs or if the database just needs to be grown. To write a review, you must be diagnosed with IBS. The site is run by Sophie, who also has an IBS blog.
UPDATED August 30, 2008: I'm getting a lot of hits on this post from people looking for info about the hyoscyamine/Levsin shortage. The best I can offer (aside from my rambling story time post below which does actually have some useful information) is a more recently updated but still not very heartening bulletin from "The American Society of Health-System Pharmacists", full text at link & excerpt immediately below. If you have any more elucidating information about what's going on with this drug, please pass it along in a comment!
Hyoscyamine Tablet
25 August 2008
Products Affected - Description
Hyoscyamine sulfate, Alaven
Levsin 0.125 mg sublingual tablet, package of 100 (NDC 68220-0113-10)
Levsin 0.125 mg sublingual tablet, package of 500 (NDC 68220-0113-50)
Levbid 0.375 mg extended-release tablet, package of 100 (NDC 00091-3538-01)
Levbid 0.375 mg extended-release tablet, package of 500 (NDC 00091-3538-05)
Hyoscyamine sulfate, Capellon
Symax Fastabs 0.125 mg orally disintegrating tablet (NDC 64543-0114-01)
Symax SR 0.375 mg extended-release tablet (NDC 64543-0112-01)
Symax SL 0.125 mg sublingual tablet (NDC 64543-0111-01)
Hyoscyamine sulfate, Ethex
0.125 mg orally-disintegrating tablet (NDC 58177-0423-04)
0.125 mg tablet (NDC 58177-0274-04)
0.125 mg sublingual tablet (NDC 58177-0255-04) - discontinued
0.375 mg extended-release tablet (NDC 58177-0237-04)
Reason for the Shortage
* Multiple manufacturers (Actavis, Major, Ascher, Alphagen, Qualitest, Teva, Kremers Urban, Excellium, UCB Pharma) have discontinued their hyoscyamine products. All hyoscyamine products are unapproved.
* The manufacturer of Ethex brand hyoscyamine products (KV Pharmaceuticals) had multiple unapproved products, including hyoscyamine, seized and destroyed by FDA on July 30, 2008.
Some weeks ago, I had an appointment at my GI doc's office. My gut had been more or less stable for over a year - as measured by weight and nutritional status as well as quality of life issues like number of bowel movements a day and level and frequency of pain. For me, I use the latter two as predictors of likely impact on the former. There's a very tight and strong correlation if you map the symptoms and signs out over time (greater than a month I'd say). A few months ago, the gut cramps started getting routinely worse. My toilet time was increasing as well. I put off making an appointment, hoping this was just a bump. But when the pain and frequency got bad enough that they were affecting my job attendance (tardy because I kept having to return to the bathroom in the AM) and performance (alternately spaced and cranky from pain), I made the appointment.
I told the GI nurse practitioner I saw that I had already increased my hyoscyamine and was taking about 4 pills a day. I made sure to communicate that I can take more and am OK with taking more but I'd need a script written for more since my primary screwed it up last time they called it in. Also, I was very clear with the GI nurse that I thought this change in severity and frequency of my symptoms was something to attend to not simply for relief of these symptoms but for reassessment. This is something I've had a hard time communicating to doctors, particularly GI doctors, in the past. Maybe there's something I don't know, like maybe it's normal (as in common, innocuous, and expected) for people with hyperactive guts (for lack of a better term) to become desensitized to their meds and require periodic increases or changes. But so far, no one has sat me down and explained that. Also, if anyone were to try, they'd have to do a lot of explaining because quality of life issues aside, I simply won't accept that it's innocuous for someone whose appetite and activity level are relatively stable to become clinically malnourished every 18 months.
GI nurse was agreeable. She's up for a reassessment, starting unfortunately with a colonscopy, of course. This office has wanted to do one since last Fall and I put them off once already*. I agreed to one this August but with the understanding that if it's negative, we at least consider looking at the small bowel and discuss vasculitis as well (steroids made my gut feel mmm-mmm good).
In the meantime, she told me she'd write me a script for something other than hyoscyamine, partly to give me something stronger for the worsening symptoms and partly because her patients were reporting problems with hyoscyamine distribution. Indeed, I had just been told at my pharmacy that I couldn't have my script refilled. I find if somewhat disheartening that the pharmacist didn't know (or seem to care at all) why there was no hyoscyamine to be gotten.
A bit of research has turned up the following information about the hyoscyamine shortage:
From the Cleveland Clinic Pharmacotherapy Update (full text is on the last page of this PDF document)
In June 2006, the Food and Drug Administration (FDA) made their Unapproved Drug Initiative a top priority (See Pharmacotherapy Update newsletter May/June 2007). This initiative was established to emphasize the FDA’s commitment to providing consumers with safe and effective medications.
All hyoscyamine (Levsin®, Levbid®) products are considered to be unapproved by the FDA. These products were on the market prior to the FDA’s approval process that establishes safety and efficacy. Although the FDA has not taken action against any of the manufacturers of hyoscyamine, many manufacturers have voluntarily withdrawn their product(s) from the market to avoid a potential review by the FDA. This has resulted in an unexpected increase in demand on some companies, and thereby creates a shortage for the remaining products.
And so I left my GI doctor's office with a script for some good old fashioned donnatal . Ever had donnatal? If you're a doctor who prescribes it or who believes the donnatal cocktail is a suitable substitute for the more simple but similar drug hyoscyamine/Levsin, you should try it. Seriously. I suggest this because apparently doctors think ingesting belladonna with a side of barbiturate is as innocuous as sniffing a daisy on a summer day but woah mama, let me tell you, it's not. Why do I call it a cocktail? Because here's what's in it: A pinch of Hyoscyamine sulfate, a dash of atropine sulfate, a whisper of scopolamine hydrobromide, and a liberal splash of phenobarbital. I do believe it's the last one which does me in, taking a toll on my ability to do things like walk and talk. I've had it before, once, in college. It is not a functional medication for me. That is, it leaves me stuporous and trippy, which is not exactly the goal in medicating my pain and frequency since both non-treatment and treatment with donnatal have the same outcome of lost productivity.
For the past few weeks, I let the Donnatal script sit in my drawer unfilled while I whittled down the plain ol'hyoscyamine-sl tablets left in my bottle. And while I was counting them (6 left), I discovered a nasty little bit of information. My script is for one pill three times a day, as needed. This is not exactly right, and the reason for it is the result of my new (as of this year) primary care doctor's office having communication problems. What I had been on was 1-2 tablets 3 to 4 times a day. I hadn't been taking it that much when my new primary refilled it with the scanty 1 tab TID order so although I noticed they called it in short, I didn't make a fuss about it at the time. Now that I was in greater need and looking over the information on the bottle, I realized that by my reckoning, 1 tab TID should equal 90 pills for a month's prescription. On my bottle it said "60 pills". WTF?
I took out my other pill bottles and noticed similar shortcomings. Ok, it must be the PRN aspect, I figured. I took out even more pill bottles (I have a lot of pill bottles folks), finally getting to the Donnatal which was written for 1 tablet four times a day. Note that this is not a PRN order. How many pills should I have for a month's supply then? 120, right? Not 80? No, definitely not 80. So why does the bottle say 80? Again I say, WTF?
I called the pharmacy today and asked them to look up how many pills they recorded the order being for. In each case, the number the pharmacy said my doctors' wrote for was less than what you'd get if you did some math. Here's what the doctors apparently wrote for.
Celebrex 1 tablet BID (PRN) = 30 tablets (not 60).
Hyoscyamine 1 tablet TID (PRN) = 60 tablets (not 90).
And lastly, Donnatal 1 tablet QID = 80 tablets (not 120).
I called the docs to ask "How do you guys calculate how many pills to write for on a script?" and referenced the particular script. Here's what they had to say:
- PCP: Er, I'm not sure. I guess I can ask someone.
- PCP call back: Um, we don't know. It depends on how long the patient needs to take it for and how long the patient's been taking it for...(I've been taking this med for years, I tell them). Also, uh, it depends on the patient. It's not that important though. (I explain that actually it is because I got a scant refill and then they ran out and now I'm taking a drug that is addictive and unpleasant - I believe in feedback).
- GYN: Hang on, let me get your chart. Ok, written on July 07, no number of pills recorded. Sorry, sometimes we just don't put down that much information. Here's the refill in January...by...oh, by me. I called it in for 30 pills with six refills, sorry about that - if you need anything at all, let me know, alright?
- GI: still waiting. The message I left actually was regarding wanting off the Donnatal. I mentioned Bentyl, and said the Donnatal was too sedating and I can't take it on a routine basis. I'll hit them with the "how many pills do you write for when you write a script" question when they call back.
Why do I care? This isn't just nitpicking folks. There's a real practical side to my asking about this for the PRNs and not. But for the sake of argument, consider a PRN med, like the Celebrex. I take on average one pill every two or so days. But if the weather's bad and my joints are killing, I take more. If I have a higher than normal activity week, I take more. If I have a bad period, I take more. If one of the ovarian cysts rears up and hits me with weeks long pain, I take more. If some combination of these factors occurs in a given month, I will be taking it BID most days, and 30 pills 15 days worth at that dose. So in sum, I have to plan to have as much on hand as I might need because I can't predict when I will need to take the BID every day dose and when I might be able to skip it. Therefore, if I need to make a point of saying "hey can you write that for Y pills please?" (where Y = daily maximum x 30 days), I will. But I need to know that I have to ask.
And why am I blogging about it? Aside from letting you know that Donnatal is not a mild drug, my point in writing this today is to share my experiences in a subtle little bit of patient advocacy/communication with you. If you're a provider, you might want to consider it a caution in assumption. Write for what your patient takes. If you really do know the patient well, sure, you can assume more or less safely that you know what the patient's needs are. But if you don't know the patient that well, why not ask? If you're a patient, look at the script carefully. Do the math. Ask for clarification and correction of even what seems like a small error or discrepancy in your meds and med orders. These little things can add up. For me, they add up to less than ideally managed symptoms. There's a financial consequence as well in terms of more frequent refills.
* = I'm thinking there should be some kind of frequent flier program for scopes. Maybe like those cards they have at coffee shops, where you get it stamped or punched each time you go and eventually you get a free coffee or a coffee upgrade. If I'd been stamping since my first ever endoscopy, I'm fairly certain I'd have a free angiogram by now.
I was talking with a graduate student in my program today and medical stuff came up. She's had a run of bad health in the last few years - being diagnosed as needing heart surgery and then had acute and quite bad GI episode (likely due to or exacerbated by a series of intestine slowing drugs a presumably well intentioned but apparently moronic provider put her on). She's finally coming through the worst of it, got herself a good set of doctors, but is now dealing with the aftermath. Good lord do I know about aftermath. And the "waiting for the other shoe" feeling that's always lurking.
As we were talking, she mentioned that she's found it unbelievably difficult to find a good doctor here in our state. Here I thought it was just me. I had chalked my impressions about the current state I live in and the difficulty to find providers who were not jerks from the word "go" or marginally competent up to various subjective experience - such as my having been married to a doctor, the daughter (and niece, and granddaughter) of a nurse, or being a hospital staff member (and thus able to get the low down on a variety of doctors and practices). But here it seems my impression is shared by someone who has no such history, other than her also having lived in a state other than this one.
So let me just say, for the record, I'm not on crazy pills. Connecticut sucks for doctors and I can't wait to MOVE out of this miserable state. I guess if I had to put my finger on a probable reason, I'd say it's something like a population, community, and government overrun with rich, socially apathetic people do not attract good residents, be they medical or otherwise.
Still on the prednisone. I think I'd like to stop but I guess I'm supposed to taper. I haven't been on it long, although it's a high dose and I suppose better safe than sorry. I'm ready to be done with it though. Yes, my hip feels excellent. My gut hasn't felt this well in some time, and so far (knock on wood) I haven't had a single GI side effect from the prednisone.
However....every evening something starts up where my neck, shoulders, and upper back are just killing, and all along my lymph nodes is so sore I feel like they're going to pop. My primary care thinks the pred might have unmasked a minor tonsilitis/sinusitis thing. Sure, why not. My tonsils are of the chronic variety, plus it hurts in all the likely places so that explanation fits. But man, it feels like having a head cold on steroids. (that was a joke, get it?)
And so I've about had it with looking fabulous and feeling shitty. I'll take looking shitty and feeling less shitty, really. However, that's not entirely why I'm blogging. I'm blogging because I just got a health-reduced lifestyle related smack upside the head and it's making me feel totally toxic. I need to get this out somewhere, and well, here's this blog waiting for things to be put into it so what the hell.
I think I've blogged about this or related issues in the past here. I'm not sure. I know I linked to Christine Miserandino's excellent essay, The Spoon Theory, (read it!!!) on the topic of the additive and preemptive ways you limit and are limited when you have chronic, as in daily, health issues. As it plays out over life, the consequences are further reaching than just the things you can't do. I've particularly struggled with the frustration and sometimes near grief over the things I was planning to do but had to cancel. It gets so discouraging sometimes I will simply avoid making plans so I won't have to deal with canceling them.
On top of my own feelings, which are varied and strong, about cancellations, avoidance, or other manifestations of wellness related limitations, I deal with the feelings and reactions of the people around me. Sometimes these fall short of supportive. E.g., I found out today a family member believes that when I limit myself, I am in fact just fine but would rather not do whatever it is I had planned to do, what I wanted to do, or what this family member wanted me to do.
At the moment, this bit of news leaves me immensely frustrated, discouraged, and disappointed.
The capacity in which I deal with consent processes is quite different from the issue at hand in the story below. The people I am obtaining consent from are in a research setting, not a treatment setting. Thus, in the contexts I am most familiar with, the issue of withdrawal or refusal on the part of the patient/participant is to be assumed a basic right. As a researcher, I am very careful to not only explain this but to make the environment felicitous to such a choice on the part of the people who reply to recruitment for our studies. As a teacher, I give my students examples of behavior which would constitute a "cost" for withdrawal, such as adopting even a negative tone of voice or posture with a potential or actual participant.
My point is, I am biased. I realize that this withdrawal/refusal bias is not quite appropriate when it comes to medical treatment as opposed to behavioral (or medical) research. So I try to keep that in mind as I turn over the story below about a mother who refused two (related) types of Lupus treatment for her minor daughter. Still, I can't help feeling that the choice to bring neglect charges here was a poor one. How much information was she given? And most importantly, were the medical providers aware of and sensitive to the reality of this woman's distrust which was fueled by - if not entirely based on - the suffering her daughter was experiencing?
It's not the best written story. As with any media account, there is trimming and fluffing. I've taken out what seems to be fluff but I can't make up for the lack of information. Still, it's the only story on this case out there at the moment. It's a tragic situation, one I can't help relating to somewhat since I also have trust issues with medical providers which have lead to some very and I'd say inappropriately contentious encounters. I can only imagine I'd be the same way if I had a kid who was sick.
I present the information in the article as food for thought. The issue being not whether the mother's judgment was correct or incorrect but whether the issue of patient or patient advocate/guardian trust could be better recognized and better addressed in such situations.
Excerpted from the Hartford Courant
Girl In Medical Dispute Dies
By Hilary Waldman and Colin Poitras, Courant Staff Writers
March 12, 2008
Chelsey Cruz, a 15-year-old who ended up at the center of a custody battle between her mother and the state that left each side accusing the other of harming her, died suddenly Tuesday.
The state Department of Children and Families last August filed charges of medical neglect against the girl's mother, Kimberly Castro, and took custody of the East Hartford teenager.
Castro had disagreed with three teams of doctors who treated Chelsey for lupus.
DCF stepped in following a complaint by child welfare authorities in Massachusetts. Chelsey at the time was being treated at Children's Hospital Boston.
Doctors from Connecticut Children's Medical Center in Hartford and Yale- New Haven Children's Hospital had filed complaints with Connecticut authorities, contending that Kimberly Castro was hurting her daughter by objecting to the treatment they recommended. Those charges did not stick.
After the Boston complaint, however, DCF placed Chelsey in the custody of her grandfather, who agreed to follow the doctor's orders. Both sides were awaiting a final ruling in the case when Chelsey died.
In an interview last autumn, Chelsey, an honors student, said she felt her mother was acting in her best interest. She said her biggest wish was to go home and be healthy.
"I feel kind of angry that I'm not able to be with my mom right now," Chelsey said in October.
Michael Perez, Castro's court-appointed lawyer, said Chelsey was taken to Connecticut Children's Medical Center Tuesday morning and probably died of cardiac arrest caused by sepsis, an overwhelming infection that can shut down the body's organ systems very rapidly. Perez said an autopsy is planned to determine the exact cause of death.
...
The dispute over Chelsey's care began almost six years ago, when doctors at Connecticut Children's Medical Center diagnosed the girl with lupus, a disease in which the immune system mistakenly attacks the body's healthy tissue.
...
Chelsey, her doctors said, had a serious complication called lupus nephritis, which can cause devastating kidney damage. They prescribed steroids and an immediate intravenous infusion of Cytoxan, a drug approved for cancer treatment that has shown promise in stopping or slowing immune system attacks in lupus patients.
When Chelsey continued to be wracked by complications, including abdominal pain and diarrhea, her mother lost faith in the doctors at Connecticut Children's Medical Center. Castro transferred Chelsey to Yale-New Haven Children's Hospital. There, the doctors found that Chelsey's kidneys had failed.
They blamed the lupus, but Kimberly Castro blamed the medication.
At Castro's request, the Yale doctors switched Chelsey to a newer form of treatment. But that, too, caused serious side effects and Castro objected to that, too. That's when Yale called DCF, accusing the mother of medical neglect.
After an investigation, DCF determined that Castro simply no longer trusted the doctors. As a compromise, DCF and Castro agreed that Chelsey's care be transferred to Children's Hospital Boston.
But it wasn't long before the same fight Castro had at Connecticut Children's and Yale broke out in Boston. Castro did not want any more Cytoxan or the alternative drug, Cellcept. The drugs, she said, were killing her daughter.
After a lot of angry back-and-forth, an order of protection was signed in Massachusetts in late August. Until Chelsey was returned to her grandfather's home in East Hartford, a uniformed guard was posted outside her room in Boston to prevent Castro from taking her daughter out of the hospital.
...
Perez said a Superior Court trial on the medical neglect charges had just concluded in February and that Castro was awaiting a ruling. And he said, she remains convinced that the strong medications were too much for her daughter.
"Ms. Castro strongly believes there is a connection between the drugs that were being used and the results today," Perez said.
....
I'm feeling down today. I had a bad intestine day yesterday, my legs have been killing at night, and the PT is not going well. I have a lot of pain doing the exercises, both in and out of the pool and I've been exhausted after the pool exercise.
So far I've only gone to PT once a week since the holidays sort of disrupted the scheduling. This week will be the first time I go twice. Once today and again on Friday. If it doesn't go well, I will have to reassess whether it is worth it to continue the therapy - or at least whether it is worthwhile to continue like this. I've given myself this week as a cut off for making that decision otherwise I know I will let it play out and start doing things like canceling appointments and avoiding my out of pool exercises. I know I will do this. Knowing doesn't mean I will not do it, so it's best to take steps to avoid coming to that point.
Sounds silly but in my screwy world, it seems reasonable. After this week, I'll have had four appointments and I think I'll be able to decide if the lost time due to low energy from fatigue which is seeming to always follow is outweighed by any noticeable reduction in hip pain and increase in stability.
The therapist asked me today, as she always does, how things are going, how I'm feeling, how I felt after my last appointment. "I really don't feel very well today, I've had some pretty bad leg pain in both legs, mostly down in my ankles and up in my knees although my right thigh was killing for a couple of days this weekend. And I've been exhausted after the appointments." Her response was "Well we're really not doing much..."
And that made me feel pretty bad. I would say it pisses me off, because to be honest it does. But the pissed off is secondary. I know it is. The primary thing is that her saying that felt like she was trying to negotiate or debate the point. And that's just shitty. I told her that I realized we aren't doing much and that this makes me feel bad, feeling so tired from doing so little. This is not normal for me. I lived 33 years of my life NOT like this. I got accustomed to NOT being like this. And now I live like this and I don't like it. I added, after a moment of marching in place in the pool like a good little patient, that I also didn't like hearing that we didn't do much because I am very deeply aware of that and hearing it after I was asked how I'm feeling made me feel like a big loser for being so tired from so little.
She apologized. Pardon the pun but it was a watery apology. The apology wasn't the point so much though. I didn't think telling her how it felt would make it all better. But I did think that she should know how her off hand remark had made me feel.
So now I'm home, I'm pooped, and I've got a bit of a temp. Despite that, I'm not feeling wrecked physically - hey who knows. Maybe this time will be different and I'll not feel horrible. The temp is not a good sign though. I'm thinking that it is nice to know I don't have much to do tomorrow, but even that thought has a barb in that it leads me to consider how well I'll be able to live (let alone thrive) in a professional job with a body which is so reliably unreliable.
My first PT appointment was on Tuesday. I was evaluated, measured, and all that. I left and the therapist changed my exercises (from the last time I was in PT, about 28 months ago), so now I have three total that I'm doing.
My second PT appointment was today. It's water therapy. Interesting, and somewhat surprising since I didn't realize my ankles would still take a bit of a burden in the pool. I was sort of hoping the water would get us around that. But no. I kept having to stop and roll them.
I had a different therapist from the one I saw two days ago. She started by asking "So have you noticed any improvement since your evaluation?" I laughed out loud at her. I didn't mean for it to be a bitter laugh, truly, but progress since Tuesday? That seems a bit ambitious.
"Ok, you're here for an ultrasound, to re-evaluate the cyst?" the woman at my gynecologist's office asked me. I told her yes.
"But the pain's been better, right?" she said.
It's times like this I want a needle scratch sound effect. There was nothing in my history with that office since my last appointment, or in that day's interaction up to that point, which would suggest resolution or improvement of my pelvic pain.
How do you respond to that?
I'd say this is good evidence that the Lyme Disease awareness among the general population is not just limited but BAD. My guess is this kid got her information from internet searches and from friends. I don't think internet medical information (or searching) is inherently bad, but I do think not knowing how to gauge scientific and medical information presented on the internet plus the free form and flow of information on the internet makes for a pretty horrible combination (from a public health/disease awareness perspective at least).
The medium is new but the issue isn't. There's always been "folk" diagnostics, word of mouth, a friend of a friend's aunt, etc. which are often seen as at least as informative as scientifically sound medical information. And these sources are closer, easier to access, and have an affective link which characterizes few if any patient/provider contexts or relationships.
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.
According to my GYN, the ultrasound was read wrong. Or done wrong. Turns out it wasn't Medea after all. It turns out this cyst is on my right ovary. And so I need a new name - Large Marge.
Marge is big and the whole thing is displaced, now sitting behind my uterus (which is, on account of it being tipped backwards, sitting on top of my bowel). I can't imagine there's much room back there. Poor gals. They're all crammed in like sardines in a can, like clowns in a car, like adjunct faculty in a storage closet turned office.
We'll look at it in one month, says my GYN, and at that time we can decide what to do. "In that case," I told him "I'll save my barrage of 'why do I keep getting these friggin cysts?' questions for then."
What's the lesson from this? BYO Films and not just the report. I think I knew this already, but as with so many other lessons in life, I have a less than steep learning curve.
I never, ever imagined there would be a point in my life where I'd be wishing for hemorrhoids...
I got a call from the GI doctor's office with my results of the various scans - probably Medea and not much else is my guess. The call came right in the middle of the second two hour lecture I was giving today, which ended at about five PM. Yes. Of course. Hey, at least it wasn't Friday.
I realized while I was thinking about the above and my health in general this evening that what I think I need most right now is this...
...because you can never have too much "Box of Kittens"
Update: Medea has been declared a 4.8 cm simple functional cyst who needs attention in the form of more pictures in something like 6 to 8 weeks. I can't help wondering if my mirena should be implicated as a suspect in Medea's recent waxing.
Also, now that I've written the phrase "my mirena" I have the Macarena song in my head... "Aaay, my Mirena! Yikes!"
While I'm on the topic of a medical remix of the Macarena, do you think the scrubs the guy's wearing in this macarena tutorial are a fashion statement or an indication of his profession? The digs, foolishness, and time for the recording certainly help make the case for 3rd year med student.
Here's my plea. If you are a health care provider who has a patient whose severe diarrhea has caused sustained and serious weight loss, please for the love of god work that patient up for malnutrition. Especially if she's lactose intolerant, has been taking a proton pump inhibitor nearly ever day for the last 20 years, says that her stools are oily, and has such a low triglyceride level it'd make a starving model blush (and she insists she eats a totally fat filled diet).
Oh yeah, and if she's complaining of aches and pains and saying things like "I'm so tired all the time. Even limited activity makes me exhausted," "I have a hard time concentrating and staying focussed on tasks I used to be able to attend to easily," "I've had to go back to therapy because I've been going around basically picking fights with people," and "My left hand and my foot are tingling now and then. It's a little disconcerting." Because it is entirely possible that your patient might have a vitamin deficiency. Like I do.
(From the NIH's Office of Dietary Supplements)
Vitamin B12
When is a vitamin B12 deficiency likely to occur?
Results of two national surveys, the National Health and Nutrition Examination Survey...and the Continuing Survey of Food Intakes by Individuals...found that most children and adults in the United States (US) consume recommended amounts of vitamin B12....
A deficiency may still occur as a result of an inability to absorb vitamin B12 from food and in strict vegetarians who do not consume any foods that come from animals....
As a general rule, most individuals who develop a vitamin B12 deficiency have an underlying stomach or intestinal disorder that limits the absorption of vitamin B12....
Sometimes the only symptom of these intestinal disorders is subtly reduced cognitive function resulting from early vitamin B12 deficiency. Anemia and dementia follow later....
Vitamin D
When can vitamin D deficiency occur?
- when usual intake is below recommended levels
- when there is limited exposure to sunlight
- when the kidney cannot convert vitamin D to its active hormone form
- when someone cannot adequately absorb vitamin D from the digestive tract
(Vitamin D deficient diets are associated with...lactose intolerance)
So now I have something like reason #5 to feel less bad about "firing" my last GI doctor - "Doctor considers significant short term weight loss as being only confirmation of reported diarrhea without bothering to consider what it might mean in terms of the nutritional status of his patient"
I read an interesting post over at Musings of a Dinosaur called Drug Seeking in Primary Care. In it, the writer discusses encounters with different types of pain med seeking patients. He makes an excellent distinction between "the patient legitimately seeking to form a new doctor-patient relationship for management of a chronic condition requiring controlled substances" and what are traditionally called "drug seekers" (but which more properly could be called "drug scamming addicts").
While looking over the responses to his post, I came across Cathy's Place, and her recent post describing a visit to her doctor's office where they had recently hung a sign in reception stating "Do Not Ask for Pain Medication". Cathy's initial response to the sign is similar to what I think I myself would experience were I to find myself face to face with such a notice. Reading her post made me consider how pain has been handled in my medical history.
Here's a patient perspective on just some of the problems presented by "drug seekers" (that is the "drug scamming addicts" kind). They take up time and resources which should more appropriately be used for patients who have a legitimate medical complaint or concern. Their habits, narcotic and interpersonal, can serve to establish or confirm any underlying health care provider approach of doubt or suspicion of patient complaints and patient interactions. In short, their behavior creates risks for compromised care of all patients.
But Cathy's post raises an interesting point. Given the acknowledged dangers (for providers and patients alike) of creating or feeding a narcotic addiction, it seems the general tendency would be towards caution - either zero tolerance type caution of a type the "Do Not Ask for Pain Meds" sign suggests or sensible discretionary caution, as seems to be described on Musings, where long term pain medication can be approved but only in limited circumstances, such as when a continuing, confirmed painful condition cannot be otherwise treated. And yet this is not the case. Not by Cathy's experience and certainly not by mine.
My own recent experiences with this come from both outpatient and ER care. I'll go with the ER one first.
I have migraines, had them since I was in my 20s. They had been mostly menstrual, and I had been taking Frova in what is apparently an off label manner premenstrually to keep them at bay. Last summer, they changed in frequency coming any old time of the month and sticking around for days. I made an appointment to see the doctor for a reassessment, and he increased the frequency of the medication. Then they changed in character. In addition to the photophobia and over sensitivity to sound, I had tingling in part of one hand, near blindness in one visual field of one eye, some creepy cognitive changes, and one episode of vomiting. I took my migraine meds and rested, waiting. It seemed to abate some a few hours later, so I got up and started making dinner. The usual dull rotten feeling of the pain came back and brought with it a novel sensation of a series of sharp lancing pains in the occipital/temporal area which were so intense they left me gasping for breath. I went to the ER. I went because I have the misfortune to have studied stroke patient case histories in my grad neuropsych courses, I'm over 35, I smoke, and I have a family history of cerebral vascular disease. Hence, I felt the smart thing to do was to make sure this wasn't something worse than a migraine.
In the ER, I got an IV, and antiemetic, and an offer of pain meds. They offered morphine I think, but remembering something about this possibly raising intracranial pressure, I asked for something else. I can't remember what they gave me, not morphine but possibly also not something which was a non-narcotic. What I didn't get was any imaging, which I found a little troubling.
Then there's the GI doctor. Good old fired GI guy. I came to his service under one of his colleagues after diarrhea and post-prandial intestinal cramping cost me about 20 pounds in less than a year. For a while, levsin and loperamide got the symptoms controlled enough that I was finally digesting the food I ate, regaining weight, and not in so much pain. Then the symptoms started getting worse again. I started losing weight. I went for a re-evaluation and ended up with the now fired GI guy. Fired GI guy's response was to prescribe Ultram. "Isn't that addictive?" I asked. "Oh no" he assured me.
Meanwhile, he worked me up as if I were a 50 year old man and found nothing which would explain the symptoms. Had I remained under his care and his recommendations, I would have been taking Ultram for the pain, a higher dose of loperamide and levsin for the the diarrhea and apparently quite rapid transit of food through my gut, something else for the nausea that I inevitably had when on a higher dose of levsin and loperamide, and possibly another drug for to increase my appetite so I would want to eat more even if eating anything caused pain and nausea.
Now to me, these treatment plans and decisions don't sound like they come from people who are worried about perhaps unnecessarily creating a drug seeker. The ER doc? How about a head CT? I know at the weetiny-ville community hospital I went to that night they may not have been able to do an MRI that night, but a CT could have happened. Instead I got "treat it and beat it". The GI doctor never took into account that endometriosis might have been causing or exacerbating an underlying irritable bowel. Rather than allowing himself to think of my whole body (or even proximal organs) in an attempt to find (and treat) a probable cause for the symptoms, he retreated to a diagnosis where the only option is to treat the symptoms.
In both of these cases, I went in looking for answers, looking for identification either to rule out something terrible or to ultimately (hopefully) treat of the cause of the symptoms. In both cases, happy drugs were the only answer I was offered. Sometimes the only choice is between the lesser of two harms - harming someone by allowing chronic pain to go unchecked or harming someone by making them dependent on a narcotic. This choice should be a last resort, one weighed only when other means or options have genuinely failed.
What I'm realizing in thinking about these cases in the context of the drug seeking patient issue is that too many times I've not had the assistance of doctors in ensuring that we've exhausted the other options. I've managed to skirt treatment which could result in my being labeled as or in my becoming a drug seeker (in the nicer or less nice sense) only by being a total pain in the ass - that is only by insisting on a higher standard of practice than these doctors were willing or able to give.
As the in house linguistics major, I was sometimes called upon for word and language references when I worked as a unit secretary. My least favorite was the time a nurse asked me to use my extremely out of practice Italian to communicate with one of our frequent fliers who spoke nearly no English. "Hai dolore al petto?" I asked tentatively (and, I think, incorrectly), only to be rewarded with his barrage of fluent Italian, of which I caught about every fourth word. I felt totally unhelpful and we were none the wiser for the nurse's having recruited me in her efforts to communicate with her patient.
But my all time favorite was puss - or more specifically - the adjectival form of that word. On more that one occasion I was fed the line which began "How do you spell..." And I would answer merrily "Exactly how you hope it isn't spelled."
I asked my mother about this one time. Without batting an eye, she rattled off "p-u-r-u-l-e-n-t". Damned English major RNs.
I just got back from my appointment with the potential new PCP. I think I found a match. Her office staff are friendly and efficient. And I liked her a lot. Very down to earth, and we just talked today. She told me about herself and stuff like who covers for her and when, how long I can expect to wait should I need to see someone urgently, what hospitals she is affiliated with, her policy on referals ("I might have someone I'd recommend but if you have a preference for someone else, that's fine too. I'll work with pretty much anyone").
We talked about Lyme disease and where she comes down on the "controversy" - nicely her view seems compatible with my own.
We talked about why I fired my last GI doctor(s) and she agreed that it is reasonable to expect a doctor to treat the whole patient rather than a single organ of the patient. She also said she could recommend a new GI doctor if I didn't have anyone in mind.
Some of the other doctors I see (ortho and GYN) came up. Both were people she had heard of and respected a good deal. Apparently my GYN is "famous", didn't know that. I knew he was good mind you, but not famous. So yay for me for researching him. It's sort of validating to have a doctor tell you that the people you chose to see for your health care are the people who are the most highly recommended in the area.
And she was just, well, cool. I like her demeanor. I told her that I used to have no problem with health care providers but since the Lyme I've developed a sort of low level distrust which rears up now and then, and that when I'm stressed I tend to get angry. We talked about this a little, I explained I see a psychologist for it, and she also recommended a book if I was interested.
We left it at I'll call and send over my record if I chose her to be my new primary. I'm pretty sure I will.
Since I'm about to see a potential new primary care doctor tomorrow, and since I'm (um...) picky, I was doing some quick research on how to get the most out of a first appointment. I've had some bad experiences, mostly from trying to get by with a doctor who is not a good match for me, so I wanted to see how other people (professional and not) go about making this decision. Putting it in terms of good and bad "matches" sort of makes me feel like I'm going on a blind date. Which is a little odd.
Below are some selected sites which seemed to offer some sound sugggestions on finding and choosing a primary care doctor.
From In My Humble Opinion: "...A bunch of advice on picking and interacting with primary care doctors. Subtitled…Things I wish my patients knew"
From the Georgia state medical board: "Tips on Choosing a Doctor"
From Scripps Health: "Choosing a Doctor Who's Right for You: Communication is the Key"
As is noted in the Scripps Health article, some of the qualifications/education/training info you might want to know can be found on hospital websites. E.g., I live in CT. The big hospitals closest to me are Hartford Hospital, St. Francis, and the UConn Medical Center. There are also a few smaller community hospitals nearby, two of which are in the same "health network".
Each of these hospitals and/or health networks maintains a website which you can usually find relatively easily by doing an internet search for that hospital. I've found that often the search results include results for physician directories or "find a physician" pages offered through the hospital website.
I'm sitting here waiting for my neurologist's office to return a call.
I called about 24 hours ago. I called again this morning. "Sometimes it takes up to 72 hours to return a call..." the woman who answers my call tells me.
It's been over a month since my insurance company refused to cover the off label prescription for migraines my doctor gave me. My doctor's office's solution to this problem? That I should come in for another visit. Nothing in my condition has changed since my last visit, except that now I have migraines so often I can barely find a day when I don't have one to drive the substantial distance to my doctor's office.
The only problem which necessitates my needing to get into the office is that my doctor and my insurance company have different opinions on how I can and should take this drug. Meanwhile I have insurance which covers prescriptions and no migraine medication. To me, this sort of defines the term "clusterf*ck".
So what do you do to remedy this kind of situation as quickly and cost effectively as possible? If I were to judge my options by my doctor's office staff's unwillingness or inability to work with me on this issue over the phone, it seems I have no choice but wait a month for an appointment, line up a ride in case it's a bad day, do the 50 mile round trip to his office, pay a copay that is 1.5 times my normal copay (since he's a specialist), and rack up charges for my insurance company to pay.
Doesn't it seem like there should be a simpler, cheaper solution to this?
