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.

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