The Struggles of Being a LL Doctor

 I think being a lyme literate medical professional must be pretty uphill. Standard medical practices don't work and you have to re-orient your brain and practice to what does, you run the risk of being harassed (and probably take some flak from your fellow practitioners), and you can't really promise you patients a return to full functionality.

It's a minor miracle that so many people have stepped forward to work with us. But fortunately, some do, and those numbers are growing every year. Today's blog focuses on a few of those aspects of lyme literate practitioners.

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There were a lot of comments on the survey question of whether people had a lyme literate practitioner they were working with or not. I wanted to share these two: the first because it probably sums up a common sentiment, and the second because it is one of those double-layered heartbreaks we seem to have to live with.

"They cost more than my mortage. It can not happen for me."

"there are no llmd's out here...however, our group has just raised the funds to send a local doc for training....we are just having trouble finding one willing to go after how Dr. Joseph Burrascano was treated by the AMA and the insurance companies. It was and is a disgrace."

Being sick with lyme is indeed a pricey undertaking. (Actually, being sick is cheap--doing something about it isn't.) We've talked about that in previous blogs, but the quote above makes it clear why at least some portion of people answered that they are not seeing a lyme literate doctor at this time.

The second quote is completely crazy making. Because of the litigious environment doctors are facing in general (where 60% of doctors are sued at some point in their careers) as well as pressure from statewide medical licensure boards, treating lyme presents risks that no conscientious doctor should have to face.

And the truth is, I can't say I blame some of them. If you were a committed physician who really cared about your patients, I think you'd have to at least consider the possibility that being able to treat no one (losing your license) may not be what is best for your patients, even if it means having to turn down patients with one particular diagnosis.

The choice may come down to: serve no one, or serve most people. What would you do? (Of course we'd all like to think we'd risk it, but would we really?)

The way the medical community has chosen to police its own has put a lot of good doctors into a no-win situation, and honestly, I don't blame the ones who have turned us away. I think it is the AMA and state medical boards that need to be hearing directly from us about the effect their decisions have been having on patients, because it is their choice to continue pursuing these investigations.

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So why is having a lyme literate physician such a big deal anyway? #1 is the complexity of lyme and the associated illnesses called "co-infections". Lyme is a complicated bacteria, with a myriad of tricks up its (nonexistent) sleeve. And it often comes along with a very depleted body that can't be rushed into aggressive treatment without whole systems shutting down.

Patient care takes real time to do properly (my appointments with my LLDO have ranged from 45 minutes to 3 hours in length... and they never feel long enough) and most physicians aren't willing or able to give that time. Unfortunately, the bigger the practice, the more it is run like a factory, in some cases with limited time dictated for appointments.

But another is simply in their willingness to believe and treat. Check out this quote from one of my lyme patient lists:

"...i was bed ridden and my dr of 20 plus years stopped being my dr once my pos igenex test came in (she was told by cdc not to treat) so i was left with no one. Its an awful feeling to be so very ill and to have the entire medical system up here turn their back on you."

With the CDC reinforcing the message that treating is a bad idea, it is not surprising that people get turned away. But how utterly heart-breaking. A 20 year doctor-patient relationship trashed is just one more tragedy in this crazy epidemic.

In addition to pushing against those prevailing winds, a good lyme literate doctor also needs to be willing to break the all-knowing expert mold that physicians are encouraged to fit. And I don't necessarily mean overt encouragement, though I think that probably happens some of the time as well; what I really mean is that we have a cultural expectation on doctors to be able to "fix" us when we are "broken"... and we in turn generally take what they say with a near god-like certainty.

But LL docs can't really do that honestly, can they? They can't promise miracle cures or quick fixes, and they can't protect us from the seriousness of what we face. They lay it out in a forthright way for you: this is a marathon, not a sprint, and at the end of it all, you may never regain your health completely. We are all still learning, and there is a lot to learn, but we are in this together and are going to do our best to treat your whole self. 

In other words: I may not be able to heal you, and I need to be humble alongside you. That is a huge break form the standard mold.

So who do we call when we are bed ridden and faced with a medical community that for the most part doesn't want (or know how) to deal with us? Here's the rough numbers from the survey. (Note: as some people are seeing more than one LL practitioner, the totals add up to more than 100%)

So by far the most popular choice is seeing an MD. I got curious about how this distribution compares to the general distribution of types of practitioners. I couldn't find a website that laid all of these out next to each other, so the methodologies are probably different. But here's at least ballparks on number of practitioners in each category:

In 2008, there were 954,224 MDs in the US*.
In 2011, there were 78,000 DOs in the US.
In a Spring 2011 article, I found the stat of 5,000 NDs in the US. 
And in 2008, there were 128,000 NP's in the US.

So clearly the most available option is an MD: way more than 58.8%. Given this distribution, it's pretty amazing to me that we have the size of numbers we do seeing these other practitioners. Does this mean that a higher % of DOs, NDs and NPs are lyme literate than their counterparts in the MD group? Seems likely.

It is particularly notable that almost 19% of us see Naturopaths, when there really is a small number of them in the US practicing medicine, and they aren't even licensable in most states.

And I also wonder if MDs haven't been a lot harder on their own than the professional organizations have in these other areas... which bring us to the question of doctor harasment.

I asked patients this question, "Do you believe that your lyme literate practitioner has ever been harassed for treating lyme patients?" Obviously, this is a subjective question, and it doesn't say anything about who was doing the harassing. But here were the responses:

67% of patients of MDs say their practitioner has been harassed.
39% of patients of Nurse Practitioners say their practitioner has been harassed.
32% of patients of Osteopaths say their practitioner has been harassed.
22% of patients of Naturopaths say their practitioner has been harassed.

Wow.

Of course, this doesn't mean that 67% of all MDs get harassed, because I'm sure we have multiple patients of, say, Dr. Jemsek, in this survey. And in fact one way that doctors become high profile is by being sued, and if they keep practicing after that, then they are more likely to have people find them easily as they've planted their flag in the ground as a being willing to treat. 

It does however mean that 2/3 of patients seeing an MD in our survey live with the stress of fearing they may lose their doctor at any point because of lawsuits and licensure "reviews".

The reason given for some of the (more formal) harassment relates to the supposed over-prescribing of antibiotics. Given that, it isn't surprising that MDs are being hit hardest, as they have the most universal prescribing rights in the US of all these categories.

I find myself wishing I'd asked more about the nature of that harassment, though, since the numbers are also so high for these other categories.

Perhaps NDs are left alone more simply because they are the least formalized of the categories (and therefore have more leeway around being a little crazy anyway?) Or perhaps because they are trained in very holistic medicine, they see a lot higher % of chronic illness people and work with practices that are less regulated, for better or worse? Or they don't have a professional organization that benefits from internal policing?

More to be learned for sure. And when it comes right down to it, if I hadn't seen the 67% number for the MDs, I'd find 22% to be shockingly high. (It is shocking, isn't it?)

So, thank you, all you lyme literate practitioners who are risking your practices to save our lives. Thank you for going out on a limb and believing in us.


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This is probably a good time for my occasional gratitude pause. Thanks so much to all my fellow patients who have let me quote them, took the time to answer the survey in the first place, and continue to follow the blog and add your own wisdom in comment, both here and on our lyme support lists. I feel very grateful to be able to fill this role in the community, and for your continued grace as I find my own voice and try to make sense of it all with you.

And... I'm also going to take a break for about 10 days or so from writing blogs. You may have noticed I've been putting them out less frequently the last few weeks. My neuropathy is acting up and I think I need to de-pressurize myself a bit and slow down trying to churn them out.

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*I used numbers just from the US for this survey of practitioner types, and I know that isn't the same pool that our survey respondents came from. I realized, though, that I don't know in other countries what the labels and licensure deals are... I mean, I barely get it in the US. So it felt like I was going to open more cans of worms than would be useful. So apologies to those outside of the US!