10 Thoughts on "Canary In A Coal Mine" and "Under Our Skin"

It's been five years since the controversial award-winning film about chronic Lyme disease, Under Our Skin, was first released.




When it was first released, Under Our Skin provided catharsis for me as a patient who developed chronic pain and chronic fatigue since that fateful day I received an infected tick bite and fell ill.  It was the first film - the only film, in fact - that I could point to, share, and say to others, "Look. Watch. I'm not the only one who is dealing with this problem".

And share I did. I bought the DVD and gave it to a therapist who at the time was working with me on tips for coping with secondary depression. I showed it to a few close friends who wanted to know more about the chronic Lyme disease controversy. And I sent a copy to my parents.

Under Our Skin helped open the door for discussion about my illness, it made me feel less alone in my suffering, it validated my condition for others, and it brought up the very controversies involving chronic Lyme disease I'd been discussing with other patients in a way which easily summarized them for those new to it.

Lately, I think more about Under Our Skin in a broader sense and less about it being a piece of my own personal chronic illness manifesto. Here was a film which scored an Academy Award nomination and several international film festival awards - no small feat for a documentary film of this nature. Here was a film which took Lyme disease into the spotlight and encouraged people to take more steps to prevent tick bites so as to avoid having the kind of experience I've been having. Here was a film that spoke to a larger proportion of the population than I originally thought possible.

"Lyme disease?" I remember muttering to myself, "Who the hell wants to watch a film about that except patients?" But watch it they did.

Whatever your personal opinion about Under Our Skin is - like it or loathe it - it spread awareness about the issue of chronic Lyme disease and touched on why the topic of persisting symptoms in patients has become a loaded subject.

Conditions like chronic Lyme disease, fibromyalgia, and myalgic encephalomyelitis - also known as chronic fatigue syndrome - fall outside the usual diagnostic box and frustrate doctors and patients alike.

Patients inexplicably report being diagnosed with depression or anxiety when they're running a fever and have joint pain, or report being diagnosed with anxiety when they're dizzy and have signs of orthostatic intolerance. Instead of more involved investigation and attempts to improve patients' symptoms, some are only sent home with a prescription for psychiatric medication and told to call if there are any side effects.

Doctors, likewise, mention patients who clearly have something going wrong but they have no idea how to help them because the literature just isn't there; the guidelines they are supposed to use have no contingency plans for those who fall outside the box. Some want to help, but they don't know where to begin. A rare few are willing to experiment and try an out-of-the-box treatment for the out-of-the-box patient, and some do so at a risk to themselves.

If there were more research, if people invested more in projects to help people with such conditions, then maybe we would already have more answers which would help people. As it stands, funding for such research is slim, people are not aware of how profound an impact these conditions can have, and as long as many patients are so sick that they venture outside tentatively (if at all), the only way they can stop slipping through the cracks is to make their voice heard without leaving their beds.

It is these kinds of points which were made during the Kickstarter campaign for the film, Canary In A Coal Mine, that grabbed my attention, including this one statistic: "Male pattern baldness gets more money for research than myalgic encephalomyelitis/chronic fatigue syndrome".

It has to be one of the most ridiculous statements made in remarks sandwiched between footage for the film. Or rather, it would be ridiculous if it weren't for the fact that it's actually true. The reality is sad: ME/CFS only receives about $5 million in NIH research funding annually compared to the hairless wonder's many million dollar pot (hell, just this one private company announced an $11 million funding round for research) and an industry which generates hundreds of millions in profit. Bill Gates also stated earlier this year that male pattern baldness received more research funding than malaria - another sad surprise. So when $2 million of NIH funding is given to 3 different institutions to study ME/CFS, it's considered a big deal - however, that amount of money pales in comparison to the funding for research on other conditions.

Sadly, somewhere along the line, it was decided that vanity was more important than a person's ability to get through their day like a normal human being, such as being able to hold down a job and go out to a movie after work - maybe even have a family. Things like that. Normal, you know?

(I don't know about you, but screw my insecurities about going bald - If I had to choose between being bald and having ME/CFS or chronic Lyme disease, well, show me the god that can grant me this wish and let's get that shaver rolling. I can join the Hair Club for Men later and get a transplant or an outrageous selection of hair pieces.)

Chronic Lyme disease falls into its own funding hell, because while Lyme disease receives a fair amount of funding compared to ME/CFS, it's still relatively less compared to other conditions and projects which are specifically about chronic Lyme disease are rare.

Twelve years ago, the NIH Lyme disease program officer said data collected from the Klempner antibiotic trial for chronic Lyme disease would be used to help develop new innovative treatments for patients. Well, it's twelve years later, and the number of innovative treatments for chronic Lyme disease which have been developed from this NIH-NIAID project data are exactly zero.

But getting back to Canary In A Coal Mine...

When I first saw the appeal for Canary In A Coal Mine, it came via a tweet from a member of the ME/CFS community. I didn't know what to expect, and when I played the trailer, I was immediately taken in by it.

Canary In a Coal Mine began as a Kickstarter project initiated by Jennifer Brea, a Harvard doctoral student on medical leave whose life has been changed dramatically by myalgic encephalomyelitis (more commonly referred to as chronic fatigue syndrome, a name which does not do the condition justice) and Kiran Chitanvis, an independent filmmaker who attended NYU Tisch School of the Arts. Jennifer Brea directs the film, Kiran and Jennifer are both producers, and Kiran is director of photography.

Within days of posting the project on Kickstarter, the initial funding drive exceeded its first goal of $50,000 and today, weeks after posting, it has received over $150,000 funding towards the entire $200,000 needed to complete the film.

How has this independent film produced in dimly lit bedrooms using iPads and video cameras gained such a meteoric rise in support in so short a time? The answer lies in the trailer presented on Kickstarter, which struck such a note with viewers that they immediately felt inspired to donate:

I've viewed the trailer several times, and with each passage the same scenes stand out for me, over and over. As a whole, it is a masterful piece which builds suspense around the mysterious beginnings of ME/CFS with a history of unusual outbreaks of illness where no one could pinpoint the cause to demonstrating how ME/CFS has had a profound impact on its sufferers and the current controversy over the scientific positions on what causes ME/CFS.

In this regard, the trailers for Canary in A Coal Mine and Under Our Skin are similar: Both hint at a history of controversy and mystery surrounding the condition. Both highlight the patient experience, by capturing the suffering and changed lives of individuals and families whose lives are abruptly jarred by disease. Both point fingers at doctors who claim patients' symptoms are psychological in nature rather than looking at evidence that the condition is physical. Both open the door into sharing moments in people's lives which are difficult and usually suffered alone in silence or only with those closest to them.

But where Canary In A Coal Mine immediately diverged from Under Our Skin as a concept is what truly got to me, and almost made me break inside: The trailer is in large part made by the very person who is invested in it the most: Jennifer Brea, a patient suffering with ME/CFS.

As Kiran Chitanvis, the independent filmmaker directing the project states, the film is intended to be a narrative which pulls the viewer into the experience of what it's like to have ME/CFS in a way that hasn't been done before. And this is one reason why the trailer has been a success: It subtly places the viewer in the position of imagining what it is like to have ME/CFS and have to live life around and through it.

It can do so effectively because Jennifer Brea is telling her own story, filming her story, interviewing others about her story, and by extension, the making of the trailer and the film actually become part of her own story.

Footage in the trailer and supplemental videos on the Kickstarter page show the viewer how difficult it is for Jennifer to work on the film and the costs on her body of pushing through a 12 hour day of shooting - a day which will not be repeated because the cost is too high. To emphasize this decision, the statement is made that pacing is important to preserve Jennifer's health, and that if 6 weeks' worth of shooting the film has to be done over the course of a year or more, then so be it. There is no race to finish the film. The important thing is to finish it, period.

We witness the difficulty involved in watching Jennifer slowly walking, staggering towards a vehicle and outlining the planning required for a journey that most people don't give much thought when they get in a car for a one hour trip to New York City. We see Jennifer slowly struggling to stand up with a laptop in her arms, only to watch her fall forward. We observe Jennifer lying down on a couch in a dimly lit room, too exhausted to stand while friends socialize in a kitchen down the hall. As time trickles by, we catch glimpses of how plans and key milestones Jennifer had planned for her life have been railroaded into some murky unknown future where it's uncertain what will happen.

This is a trailer which inspired other patients, caregivers, and advocates to fund the project because it is a film that is not only speaking on behalf of all the patients who cannot march on Washington to request funding for more research, who cannot stand for more than a few minutes or even a second, who cannot speak for themselves - it inspired others because it is by a patient, about a patient, and for patients in the voice of a patient - and using this perspective to spread awareness to those who do not have ME/CFS. This angle is one way in which it is very different from a documentary like Under Our Skin.

One of the scenes in the trailer which put a catch in my throat is shown in this still:

Jennifer Brea mapping out the pathways and immunological profiles which underlie part of the myalgic encephalomyelitis (ME) puzzle, or what American researchers renamed "chronic fatigue syndrome" (CFS).
© 2013 Canary Films with permission

I can't get this scene out of my mind, because this one moment captures so much of my own experience as chronic Lyme disease patient with an diagnosis of ME/CFS as well.

While much of my limited energy goes into a few mundane tasks during the day, it also is spent on research related to Lyme disease and immunology, microbiology, molecular biology, and genetics. It is spent pouring over many documents, where I am trying to piece together parts of the chronic Lyme disease puzzle and figure out what happened to me - and to see what novel ideas I can come up with that might make my quality of life better.

This one snapshot of Jennifer Brea's life could just as easily be a snapshot of my own. I couldn't help but be moved by watching someone else having an experience similar to my own; someone who wanted to do the hard work of getting answers and learning as much as they could even with the challenge of brain fog, overwhelming fatigue, and other disruptive symptoms getting in the way.

And at the same time, this scene is also one which triggers tremendous anger. Why should she - and why should I - have to be placed in a position where we are compelled to figure out what is going on with our conditions? Why isn't there more research for people in our situation? Why aren't there more doctors who can help us? And most of all: Why the hell do people value a full head of hair over helping people be able to sit up and feed themselves - let alone go to work every day and have a life? Because that's what the dollar signs say. That's where the money is going.

Another scene which struck me is near the end of the trailer, when Jennifer sits in a wheelchair in the yard and watches others doing yard work:

Scene from Canary In A Coal Mine © 2013 Canary Films with permission

Howard Bloom, writer and former publicist in the music industry who came down with ME/CFS years ago does a voice-over during the scene, saying:

"There is a future you take for granted every day and never articulate to yourself - and yet it's always there. And when you come down with an illness that has no end, it strips away that idea of a future."

Howard later discusses the ability to see the infinite in the smallest detail as one of the benefits of having to slow down due to a chronic illness, and while this experience can soften the edges of the blow of having a bad day, it in no ways diminishes awareness that one's life plans have been altered - in some cases, irrevocably.

These scenes are not about the science behind ME/CFS, yet they strike a personal chord for someone in my shoes and I suspect they stand out for others who have been on the same path. Some of us have been up to our eyeballs in research and controversy - just for a moment let us reflect on our humanity in facing a difficult situation.

While all I can write about at this stage of the production is about Canary In A Coal Mine the trailer, I am hopeful that Canary In A Coal Mine the film will retain the same focus I saw in the trailer which put the patient experience front and center. I am hopeful there will be more discussion about the realities of ME/CFS and the scientific evidence supporting it as a physical, immunological condition and not something akin to the 19th century version of hysteria. And most of all, I am hopeful it is an experience Jennifer Brea will get through, intact, with adequate rest and a sense of major accomplishment on the other side of it.



[Edit Nov. 12: Updated to include info on director and producer roles by Jennifer Brea and Kiran Chitanvis.]

The written content of this work by Camp Other is licensed under a Creative Commons
Attribution-NonCommercial-ShareAlike 3.0 Unported License.
All images subject to copyright and are used with permission of Canary Films.

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4 Commentary: Slate's Article On Romney & Lyme Disease

It seems like over the past two weeks, every time I turned around, there's a new article about Mitt Romney and chronic Lyme disease. How much mileage from one topic can the media get? You would think by now they would have moved on, but today The Day decided it was going to post yet another rehashing about this subject.

Well, if they get to rehash, then so do I. I have some things to say in response to the Slate's article, "Why Is Romney Campaigning on Medical Quackery?", even though it's not the most recent in this set of offerings.

And again, I'd like to make one request of the media at large:

Can you please investigate more deeply the issue of people with persisting symptoms after delayed or initial antibiotic treatment for Lyme disease?

And not just spout out the same tired phrase that clinical trials to date have not shown that the use of long term antibiotics has been effective for the treatment of chronic Lyme disease (or what the CDC and other organizations call "Post Lyme Disease Syndrome")?

But I digress...

On to eviscerating the Slate...

"Let’s play doctor. A patient comes to you with joint pain, difficulty concentrating, anxiety, poor attention, and mood swings. You might run a series of tests to rule out a persistent infection or other disorder. If your patient lives in a tick- and Lyme-disease-infested area, you would be wise to test for the bacterium Borrelia burgdorferi and, if detected, prescribe a course of antibiotics. But suppose the tests come back negative and there is little evidence that your patient was bitten by a tick or was infected with the Lyme disease bacterium. If you are a good doctor, and you are, you might explore a diagnosis of depression, a disease that afflicts almost 10 percent of the population at any given time."

Okay, I'm going to respond to this with, "let's NOT play doctor", because it's not within our training and expertise to give medical advice if we are blogging or writing for online magazines and we are not doctors - or even if we are doctors, and have not actually seen the patient in question before making a diagnosis.

But as we are talking about some hypothetical case here - patient X - and not a real person, then I'm going to use patient X to discuss hypotheticals.

First, joint pain, difficulty concentrating, anxiety, poor attention, and mood swings can be indicative of any of a number of disorders. The doctor is correct to consider different diagnoses, and rule out or rule in anything which may be causing these symptoms. They can be related to some rheumatoid or autoimmune disorder, exposure to certain toxic substances, stress, immunological problems, and other conditions. Patient X may even have more than one condition which is producing these symptoms and need proper diagnosis and treatment.

I would not automatically leap to the conclusion that depression is the disease that is happening - and even so, depression can be a symptom of another underlying condition such as hypothyroidism, hormonal imbalance, or serious vitamin deficiency.

Let's reexamine this portion, and part of the succeeding paragraph:

"But suppose the tests come back negative and there is little evidence that your patient was bitten by a tick or was infected with the Lyme disease bacterium. [...] If you are a doctor who believes that the CDC and NIH have misrepresented carefully vetted clinical trial data about the diagnosis and treatment of Lyme disease, however, you might diagnose your patient with chronic Lyme disease and prescribe an intensive, long-term, side-effect-laden, mega-dose of antibiotics."

First of all, is clinical trial data about the diagnosis and treatment of Lyme disease the only data on which a medical practitioner should base their diagnosis and treatment of tickborne diseases in a particular individual patient?

The problem is this soundbite doesn't even begin to offer an overview of why a medical practitioner would think that maybe - just maybe - someone with a negative test for Lyme disease might still have Lyme disease. Or how it is that diagnosing Lyme disease can be a difficult task at times for any doctor.

The words chosen that follow - "prescribe an intensive, long-term, side-effect-laden, mega-dose of antibiotics" - reflect the judgment of the writer on how people with Lyme disease are treated without the writer actually investigating which antibiotics are used at which dosage for how long, nor how long-term antibiotic treatment for Lyme disease compares with long-term antibiotic treatment for other conditions, nor even what happens to those who have Lyme disease who do not receive long-term antibiotic treatment.

The costs and benefits of antibiotic treatment in general are not weighed and shared, so all it can be is a negative description of this treatment without investigating the long term outcomes of case-by-case studies of those patients who are either receiving it or where such treatment has been withheld.

On to another part of the article...

"As a Slate story pointed out years ago, chronic Lyme disease—not the persistent effects of a long-term bacterial infection but a collection of mysterious symptoms—has powerful supporters. Advocates for the diagnosis tend to blame the medical establishment for not taking them seriously enough."

Here I have a problem with this description of the condition, because it's not reflecting reality.

No one seems to really understand entirely what chronic Lyme disease is and what causes it. No one.

The CDC and IDSA have said that Lyme disease cannot become a chronic and persisting infection after a certain minimum allotment of antibiotic treatment, and offer up the hypothesis that any symptoms beyond this treatment are a (potentially autoimmune) condition known as Post Lyme Disease Syndrome (PLDS). However, this is a hypothesis, and thus far there are no treatment trials which put this hypothesis to the test.

If this hypothesis is so strongly supported, then why are federally funded treatment trials currently being conducted which are about providing evidence for Lyme disease as a persisting infection? Why is there a study currently recruiting which is entitled, "Searching For Persistence In Infection In Lyme Disease"? And why has another study been conducted in Europe, known as the "Persistent Lyme Empiric Antibiotic Study Europe (PLEASE)"?

This doesn't sound like the issue of what causes chronic Lyme disease's persisting symptoms is settled. If so, treatment trials which address this devastating autoimmune condition would outweigh clinical trials on Lyme disease. If one searches for clinical trials for treating Post Lyme Disease Syndrome, the total sum is zero.

To add to this, why is it that the researchers who completed the most recent research on persisting Lyme disease infection in non-human primates concluded this at the end of their recent publication, "Persistence of Borrelia burgdorferi in Rhesus Macaques following Antibiotic Treatment of Disseminated Infection"?:

"Our studies do however offer proof of the principle that intact spirochetes can persist in an incidental host comparable to humans, following antibiotic therapy. Additionally, our experiments uncover residual antigen associated with inflammatory foci. Whether persistent spirochetes or spirochetal antigen can cause PTLDS remains unanswered."

That chronic Lyme disease is a mystery is true. That one can readily come to the conclusion that it is not a persistent infection under any circumstances, in any situation, has yet to be established - just as these symptoms being caused an autoimmune condition has yet to be established.

But the content of Slate's article and that of others is very negative about the hypothesis of persisting infection without any specific evidence to strongly back an alternative explanation - or refute the evidence provided in a study such as Embers et al, above.

To continue...

"In 2008, the attorney general of Connecticut investigated the Infectious Diseases Society of America, a 50-year-old organization with more than 9,000 physician and scientist members, for misrepresenting the science of Lyme disease. Not to be outdone, Virginia Gov. Bob McDonnell assembled a governor’s task force on Lyme disease. He appointed Michael Farris as its chair. Farris is a lawyer and the chancellor of Patrick Henry College, aka God’s Harvard, whose motto is “For Christ and for Liberty” and whose “Statement of Faith” holds that the “Bible in its entirety” is “inerrant.” The school isn’t known for its biology department"

You know, we can argue this one until the cows come home. I honestly am not too keen that politicians are getting involved with medical debates - even though I as a patient want more recognition for my condition and more research for it.

What I want is more recognition from the medical profession, and for there to be programs put in place to help those of us with chronic Lyme disease. And what I really want is for someone with an understanding of the disease who has researched it extensively - and has suffered with it long term themselves - to come forward and represent me and other patients; to work from a desire to find the truth about what is causing our symptoms.

I do not need to see another advisory board, appointed chair, or politician try to defend my condition without a more intimate and thorough understanding of it. And I definitely do not need to see my condition being used in a political free-for-all from any side, from any party or special interest group, in order to try to gain more votes.

I find Slate's use of pulling out an appointed chair who is not big on science and who oversees a college with a statement of faith which holds the Bible as being infallible as being a diversion from the issue at hand: the issue of whether or not Borrelia burgdorferi can be a persistent infection.

All we see is an obvious character to take issue with if one is on the side of science and skepticism and wants an easy target to use to rail against the chronic Lyme disease issue... Of course those who are scientifically minded and skeptics are not going to take the word of an evangelical young earth creationist as being one educated about Lyme disease.

On the other hand, if we take one governor and one evangelical chair out of the picture, who do we have left that could have been interviewed instead? How about some scientists, for example? What about Dr. John Aucott of John Hopkins University, Dr. Stephen Barthold of UC Davis, Dr. Monica Embers of Tulane University, Dr. Straubinger, Dr. Brian Fallon of Columbia University, and others who have been studying Borrelia burgdorferi? They have nothing to lose by being asked for their opinion, being neither in politics, nor making money directly off treating patients, or nor working directly for the IDSA. Why doesn't Slate ask them about their scientific opinion on the cause of chronic Lyme disease?

But Slate doesn't do this. Slate goes for low-hanging fruit to support its diatribe against chronic Lyme disease - with the primary goal of denigrating Romney's attempts to appeal to voter subgroups and to support their characterization of Romney as being anti-science.

The mistake Slate makes is in conflating Romney's anti-science leanings with chronic Lyme disease as a condition which does not have enough evidence to support it. The two topics are issues which deserve independent examination.

Onward and upward...

"But the task force seems to have bought into the conspiracy theory that the infectious disease establishment is maliciously interfering with proper treatment. It states: “There is no scientific basis for concluding that 30 days or less of antibiotics is sufficient treatment for every case of Lyme disease.” Again, tell it to the Centers for Disease Control and Prevention."

I am not one of those people who will sit here and spout conspiracy theories. Refer to my page, What To Expect Here, if you have any questions. But there is the issue of oversimplifying and dumbing down the issues involved with properly treating Lyme disease - which is exactly what this article is doing.

It is not true that every case of Lyme disease is sufficiently treated with 30 days or less of antibiotics. Most acute cases are sufficiently treated with 30 days or less, but even when looking at the IDSA's guidelines themselves, they state that up to 10% of all acute Lyme disease patients experience treatment failures. These patients must be retreated and investigated for presence of tickborne coinfections. Also, a certain percentage of patients will have Lyme arthritis, which even Allen Steere treats with two months of oral antibiotics - and if symptoms are still present, a third month of IV antibiotics as well.

I can offer a number of cases where IDSA infectious disease doctors themselves have given individual patients with Lyme disease more than 30 days of antibiotics without thinking too hard, but cannot do so in detail because it would violate HIPAA practices. But these patients are out there, and have been helped by more than 30 days of antibiotics by patients treated by the IDSA's own specialists.

To add to this, there are those outliers with late stage Lyme disease and chronic Lyme disease who do not respond as well to treatment as early acute cases do. These patients have not been studied anywhere nearly enough, in part because fewer cases in these categories are diagnosed - but also because these patients' conditions are not as well understood or always as easily diagnosed to begin with because the obvious, early acute symptoms like a bull's eye rash are missing.

The Slate article continues...

"Another treatment point is telling: “We received substantial testimony from lay witnesses that they had been successfully treated with long-term antibiotics.” Pro tip: the plural of anecdote is not data. Just because someone signed up to address a public portion of the task force meeting does not mean their understanding or explanation of their own medical care is accurate or relevant."

I've said before that I know that the plural of anecdote is not data. And I understand that someone's own experience of their own medical care is not admissible as treatment for everyone.

But then, I've never made the claim that it was, anywhere... I've only made the statement that I think it is possible some people might need longer courses of antibiotics than the guidelines suggest are needed. How long, I think depends on the patient and their condition (genetics, underlying conditions, coinfections, etc).

But that is not for me to judge. I'm not a doctor, and we're talking about individual cases here... If IDSA doctors have the clinical leeway to make decisions to treat individual patients with more than 30 days worth of antibiotics and have it be covered by insurance, well, so then do other doctors - including my own primary care physician and someone who calls themselves an LLMD. The keyword in the document they published, after all, is guidelines.

If that's not happening and insurers are not covering additional treatment for patients when doctors authorize it, then that's an issue that Slate and other publications should be investigating.

To continue...

"I don’t mean to make fun of people who are suffering from what they think is chronic Lyme disease. Their symptoms are real, and they deserve help. But giving them a phantom diagnosis and making them part of a crusade to bring truth to medicine just perpetuates the idea that the symptoms they describe must be part of a complex, classic disease."

Look, this is all fine and good to hold this opinion. However, consider that I don't see enough evidence supporting an alternative diagnosis. The CDC, as you've cited, mentions Post Lyme Disease Syndrome. And yet, this is just a hypothesis and it has yet to graduate to being theory.

Just because the outcome of three clinical trials for long term antibiotic treatment on some patients with chronic Lyme disease showed that continued treatment did not permanently alleviate symptoms once treatment stopped does not mean that there isn't a persistent infection present.

And if Post Lyme Disease Syndrome is a genuine condition, with what may very well be its own genuine biomarkers for it - then as its own separate disease complex, it requires its own research arm and treatment for it.

Now Slate, are you saying PLDS doesn't exist, either, and you're going to flake on this illness which has scientific evidence to back its existence and call it depression?

Of course - because the next thing out of Slate's mouth is this:

"It’s much more likely to be depression, and depression is treatable."

Here we go with the depression, again.

Funny you should say this. Because I have had episodic depression. And I will tell you: Episodic depression was a fucking walk in the park compared to Lyme disease.

There simply is no comparison between the two, other than, well, having Lyme disease has made me feel depressed because it totally changed my life and not for the better.

Why would someone who could work full time at a high paying salary who had lots of friends and opportunity to travel the world a lot give that up to stay at home on the sofa with constant headaches and fatigue and hardly see anyone or go anywhere? To be seriously broke and give up on one's dream of owning a home?

The Lyme disease made me depressed. I don't have depression here as a separate clinical entity all on its own.

And depression, in my experience, never gave me a tick bite, an EM rash, high fevers, swollen lymph nodes, visible joint swelling, paresthesias, and a stocking and glove pattern of neuropathy on my feet.

I challenge you to ask any therapist if they think these symptoms are signs of depression. They'll tell you what they told me: "Your illness is not in your head; you have a genuine physical illness. See a doctor, but see me to deal with the depression that being ill can bring on if you need it."

And seriously... While taking antidepressants can help people with depression, if there is an organic cause for one's depression, such as infection, that needs to be treated first. One only needs to look at cases of psychiatric presentations of Lyme disease - however controversial they are - to at least ask if it isn't a possibility based on the patient's clinical history and limited response to common antidepressants.

Ask those chronic Lyme disease patients who have already taken antidepressants and have seen therapists just how well they have done. Ask. Quite a number of us have already tried exactly what some doctors suggested we do, when they thought we had depression and that is why we felt as crappy as we have. Either they're wrong, or partly wrong, or the drugs they prescribe us just aren't doing the trick.

Depression. Ha. If it is depression, well, then where are the clinical trials where antidepressants and long term antibiotics are used to treat chronic Lyme disease, so we can see the outcome? How about a third treatment arm with therapy alone? At least you'll give us patients a space of our own to swear at and curse modern medicine for not doing more for us.

There's more...

"As the CDC gently points out, mentioning other diagnoses that have been favorite catch-alls, “Your doctor may want to treat you in ways similar to patients who have fibromyalgia or chronic fatigue syndrome. This does not mean that your doctor is dismissing your pain or saying that you have these conditions. It simply means that the doctor is trying to help you cope with your symptoms using the best tools available."

And no one knows what exactly causes fibromyalgia or chronic fatigue syndrome. Obviously XMRV has been taken off the table as a cause for chronic fatigue syndrome - but some other virus or another agent may be the cause of this condition.

In any case, neither of these conditions have clear etiology, so you could be trading one mystery for another. None of which are well understood. And all of which are treated symptomatically, and all of which the drugs prescribed (with the exception drugs such as Lyrica, which is the first drug specifcally prescribed to treat fibromyalgia - which also has the unfortunate side effect of potentially causing suicidal behavior) are being offered based on an educated guess that they might work and, well, patient anecdote. They're prescribed off-label for these mysterious conditions of unknown etiology.

So how is treating chronic Lyme disease with antibiotics any different in this respect, until more research comes in on how to better treat it? Until we better understand the cause?

It may be that while long term antibiotic use for everyone with persisting symptoms may not hold up in small scale clinical trials that it may hold up in individual situations for particular patients with specific backgrounds - backgrounds which may not have been widely represented in the trials which have been held to date. Often it takes years for a wider population using a given drug or treatment regimen to expose its side effects and benefits - the outcomes are not always obvious at first.

And the last bit from the Slate:

"Disregarding my own advice about not taking an anecdote as data, I have my own story about chronic Lyme disease. A friend of one of my brothers had been suffering for years from headaches, fatigue, a sense of despair, a belief that she wasn’t worthy of her job or her boyfriend. She was diagnosed with chronic Lyme disease and was treated with antibiotics, which were ineffective. What she wasn’t treated for, and could have been, was severe depression. She killed herself."

I am very sorry for your loss, no matter what the cause. This is the tragic loss of one woman's life, and it may have been prevented.

I don't know, though, and I don't know the full story either way. I only have your anecdote.

She could have had undiagnosed Lyme disease. She could have had depression. She could have had something else entirely. She could have had more than one problem which included depression.

If depression is a concern, I recommend anyone with any illness see a therapist because in many cases therapy is equally as effective as antidepressants. And if that doesn't help, cautiously try out an antidepressant that is neuroprotective if no other biological or organic cause can be found for the depression. But certainly, if one continues to have the same symptoms while on antidepressants and begins an empiric course of antibiotics later and finds those symptoms begin to lift, well, then go with what works and maybe science does not immediately have all the answers. Sometimes symptoms which appear psychiatric in nature can have an infection as their cause.

So, anyway...

Whether or not persistent bacteria is the cause of all or some patients' symptoms, in my opinion, is still up for grabs. And at this point, many patients have either made the decision to ignore the results of the three small clinical trials which have been completed, or beg for more research on treatment to help us, or both.

I am a pro-science, pro-research person with a history of skepticism. I am skeptical about my own damn disease. And yet, no one has given me any particular advice in mainstream medicine or science as to what to do about it.

You might want to send your money directly to UC Davis or Tulane University for private research instead. But don't come kvetching to me that I'm running off to an LLMD because my primary care provider referred me to one.*

That's just more complaining - rather than addressing the root of the problem in the first place. Those of us in pain can only wait so long and do nothing for so long...

* True story.

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0 Mitt Romney, Lyme Disease, And The Media

Well, I guess I had to come out of the woodwork to comment on this recent turn of events... If life wasn't so hectic lately, I could have blogged sooner, and written about David Suzuki's observations on how changes in the environment have led to increased incidence of Lyme disease, or Senator Blumenthal's request for personal stories of patients who have been affected by Lyme disease, or the discovery of a new, serious  tickborne phlebovirus in Missouri.

But no, that didn't happen...

The first opportunity I really have to sit down and write here, the news that is crossing my desk and getting a lot of airtime is about Presidential candidate Mitt Romney and the media's commentary on how his support for greater awareness of chronic Lyme disease has been used to ignite interest in Virginia voters who have been struggling with the disease.

And the media has not stopped there, with its opinion pieces focused on how any candidate for office can and will try to influence the vote of certain subgroups of people affected by issue x or issue y... No, after initial criticism was volleyed at Romney, a number of journalists posted articles on chronic Lyme disease and how it is not a real medical condition.

Well, here we go again. It is the same story told by some newspapers and writers, over and over again, about how chronic Lyme disease doesn't exist and how doctors who treat it are taking unfair advantage of patients who are suffering and how patients are naive dupes for a disease based on pseudoscience.

I honestly think at this point that many of you who are writing these pieces for publication have a template for about five boilerplate articles on chronic Lyme disease that you have slight variations on, and publish each article just far apart from each other that the busy, overworked, and exhausted public won't notice that you essentially wrote the same damn thing again - but perhaps with a little twist.

When I first began this blog, it was because of an article written in the Chicago Tribune which was supposed to be about how chronic Lyme disease is a dubious diagnosis - when the content of the article itself had no relationship to the title, and did not examine the issue of whether or not Borrelia burgdorferi - the bacteria which causes Lyme disease - could potentially cause a persistent infection in some people.

What the article in the Chicago Tribune did was look at two doctors who were said to have treated chronic Lyme disease who were reported for disciplinary action to their medical boards for various reasons unrelated to Lyme disease and one charlatan who - like many who promise to offer a cure for cancer - has no cure and no credentials whatsoever.

What a brave and insightful piece of literature it was, to move beyond the carefully crafted soundbites of a puffed-up opinion piece, by closely examining all the issues behind why some doctors, researchers, and patients may think that Lyme disease could persist - and why and why that isn't supported by existing evidence.

Not.

The article did not in any way, shape, or form discuss the scientific complexity involved in Borrelia infections, and the difficulty that doctors can have in properly diagnosing it as its symptoms mimic other conditions. It did not look at the state of the science on Borrelia burgdorferi sensu latu, and how a broad range of strains have different effects and disseminate at different rates.

Anyone reading it would have walked away not with the message that Lyme disease and other tickborne infections can produce a complex symptom presentation. Anyone reading it would not have learned how to prevent such illnesses or to even learn if there are differential diagnoses which one should look at which may be confused with chronic Lyme disease. It wasn't a helpful article that way. What they would have walked away with is the message that there are some doctors out there who have been disciplined for various reasons who happen to treat people with persisting symptoms related to Lyme disease, and some misinformation online about what Lyme disease is and is not.

The recent spate of articles which spend time criticizing Mitt Romney's move to spread awareness of Lyme disease as part of his future goals if elected have also had pretty much the same kind of content, and as opinion pieces are intended to persuade the audience and win them over to the writer's view. However, it should be noted that in no way should these opinion pieces be taken as the final word or even current word in science on what Lyme disease is all about - because as opinion pieces, they are neglecting mention of the scientific evidence needed to support their assertions.

The New Yorker's  recent article, "Mitt Romney Versus Lyme Disease And Science", states that:

"...If left untreated, Lyme disease can be crippling, yet it is a difficult illness to contract: a tick needs to attach itself to your body for at least twenty-four hours. Even then, two weeks worth of commonly prescribed antibiotics will kill the bacterium."

Yes, indeed, if left untreated Lyme disease can be crippling. This much is true: late stage, untreated Lyme disease can lead to cardiac, neurological, and arthritic complications. However, there is more to the rest of the story when it comes to the remainder of this passage: If a tick is on your body for fewer than twenty-four hours, there are circumstances under which transmission of Lyme disease (as well as other tickborne infections) may occur - including if the tick is improperly removed. Also, even the most conservative reading of the IDSA's 2006 guidelines for the treatment of Lyme disease would state that given certain objective and clinical signs, some patients may need retreatment or more than two weeks' worth of antibiotics - particularly if there are certain cardiac, neurological, and arthritic symptoms present.

The New Yorker article simplifies the nature of Lyme disease and makes sweeping statements here. What it could have said - and still be true to mainstream infectious disease canon - could have been this:

"...If left untreated, Lyme disease can be crippling. In American scientific research to date, it has been shown that in most cases, an Ixodes scapularis or pacificus tick needs to attach itself to your body for at least twenty-four hours before Lyme disease can be contracted. Improper tick removal and other factors may, however, contribute to earlier contraction of disease. One might note that there is some evidence that in Europe, Ixodes ricinus ticks have a shorter transmission time for passing on Lyme disease bacteria than American ticks. But even then, in acute cases, the immediate treatment of two weeks' worth of commonly prescribed antibiotics will kill the bacterium in most cases. If symptoms continue, further evaluation for more severe infection and tickborne coinfections is needed."

I think some more qualifiers are needed there. And I know - this is, perhaps, a less targeted passage in that it steps outside of American research and points at what's happening in Europe. But the point is, Lyme disease is a global issue and a global problem, due to global warming and climate change. It's not just Virginia's. Or even the eastern seaboard's problem.

People travel. People get sick overseas. Lyme disease is overseas. And perhaps it helps to raise the question of how much scientific research on Borrelia may be applicable in different locations the more that is learned about the bacteria as a whole... More research here is really the key to better understanding this bug.

I will, however, give The New Yorker's Michael Specter credit for this mention:

"In fact, there is a clear scientific issue that can only make Lyme disease worse—but it is a problem that Romney and the Republicans have ignored. The Intergovernmental Panel on Climate Change has noted that increasing temperature helps keep ticks alive. More ticks means more Lyme disease. This is a connection, as Mother Jones first noted, that Romney has failed to consider. Instead, he has said that spending huge sums trying to reduce CO2 emissions is “not the right course for us."

Climate change is a huge player in the tickborne illness game, and I don't need Al Gore or the IPCC or even David Suzuki to point this out for me. Look outside every year, and tell me what I don't see with my own eyes: The ticks are out there earlier, and out there for longer periods of time than they've been in the past. Ask the epidemiologists and entomologists, too, if you need confirmation... Sure populations will wax and wane to a degree - but what's the trend over time?

The Business Insider's article, "Why Romney's Statements About Chronic Lyme Disease Are Dangerous", does tend to give the topic a somewhat more balanced approach by acknowledging that there is a debate within the medical and scientific community by stating, "Many doctors and researchers don't believe in this syndrome, which lasts much longer than your run-of-the-mill Lyme disease infection. The CDC, NIAID, and leading medical professionals agree that the syndrome doesn't exist. There are others within the scientific community, and especially outside of it, that debate these experts."

This, at least, is an opening gambit which sets the tone for the rest of the article by acknowledging there is a debate - with the primary focus being that politicians such as Mitt Romney should steer clear of medical debates and leave such debates to science, where they belong. Politicians are not qualified to participate in such debates.

One notable passage for me was this one:

"The symptoms of chronic Lyme disease could also be caused by an auto-immune reaction to the infection, or lasting damage from the bacterial invasion. Either way, these symptoms aren't helped by additional long-term antibiotic treatment, which has side effects and dangers of its own."

This is perhaps the first and only statement in the entire article which focuses on what some potential causes are of chronic Lyme disease, giving it some acknowledgement that yes, in fact, this condition does exist - even if its cause has been greatly debated. But there are no citations and there is no supporting evidence given to back this passage - nor a good percentage of other statements made in the article. There is no mention, either, of Dr. Monica Embers' "Persistence of Borrelia burgdorferi in Rhesus Macaques" study or other research which present the possibility that Borrelia burgdorferi might persist after antibiotic treatment.

In Slate magazine, Laura Helmuth reports this personal story:

"A friend of one of my brothers had been suffering for years from headaches, fatigue, a sense of despair, a belief that she wasn’t worthy of her job or her boyfriend. She was diagnosed with chronic Lyme disease and was treated with antibiotics, which were ineffective. What she wasn’t treated for, and could have been, was severe depression. She killed herself."

While I am very saddened to hear of this woman's death, there isn't enough information here to know exactly what happened. She may have had severe depression, she may have had Lyme disease, and/or she may have had a completely different medical issue. I simply don't know - there's no way to verify this story - it is also possible the woman in question had both Lyme disease and depression, because it happens to a number of people. It happened to me, too... I was in so much pain in the past, I was begging for God to take me.

If you are depressed, I hope you will seek treatment for it, and see a qualified licensed therapist for help. But it has been said by many in the medical profession to seek alternative causes for depression and fatigue, as hypothyroidism and other conditions may give rise to these symptoms. There can be underlying medical reasons for one's depression, and it may be that antidepressants are not the primary tool for healing.

In any piece of writing, it is important to consider the following questions:

• What is the expertise and education of the person writing?
• What is the agenda of the writer? Are they trying to promote an idea, sell a product, evoke a strong emotional response to gain readership, present different sides of a contested issue, or educate the public on an important matter?
• What is the outcome that can be achieved by publishing this specific piece in this particular publication?
• What references and citations has the writer given to support their assertions and statements?
• Does a thorough survey of the information provided and research completed from different sources provide evidence which support the writer's position? 
• Is there information and research which supports an alternative position? What is the strength of the evidence supporting these positions?

I encourage anyone reading these articles about Mitt Romney and chronic Lyme disease to ask themselves the same questions above, and to do your own research on whether or not Lyme disease can lead to persisting symptoms after initial (especially delayed) treatment with antibiotics.

The entire Internet is out there at your disposal to use, and scientific journals, books, PubMed, and other reliable sources from which to get your information on Lyme disease - all free of spin.

Of course, you yourself will end up walking away from all the research required to even begin to understand Borrelia burgdorferi with your own personal spin - but at least you will know more than you can learn from reading a random article which gets published in an online newspaper or magazine.

And write to researchers if you want to better understand their research. It's the honest way to understand what their position is on their own work, rather than assume their position based on others' interpretations of their work. They will likely be touched that you made the effort to ask questions than assume someone else's interpretation (which may or may not be correct), and be pleased that you took the attitude that no question is a stupid question.

As for your vote: vote with your conscience. I can't tell anyone how to vote and it's not my job to tell you how to vote. I can only tell you that after seeing George W. Bush in office and how little attention and assistance he gave the Lyme disease patient community after his own battle with the disease that I have little faith in any politician delivering the much needed funds for translational medicine and treatment research that will help me and my fellow patients.

I feel pretty much the same about anyone else running for office, and anyone trying to stay in office: Show me you can make my life better, either directly or indirectly through concrete and substantial action - or hire someone working for you who will.

I don't want someone to discuss synergy (some vague assertion with no concrete plan), creating another task force or Lyme disease committee, or official state day in observance of Lyme disease. No. What I want to see is money going directly towards treatment and testing research - towards something tangible that has clear actionable goals and benchmarks to be met. What I want to see is concerted effort towards directly supporting those who are ill, with access to a wider range of treatment options, home health care aides, transportation, and supportive services (therapy to help patients physically and emotionally) during the darkest times of our lives.

I also am not a "single issue voter", either. If you are running for office and you make campaign promises that are about promoting awareness of Lyme disease - but slash support for medicare and disability, and make it harder for those of us who are ill and dysfunctional to get the help we need on a broad scale - I can't in my good conscience vote for you. I have to vote for someone who supports all of us who are dealing with disabilities - my fellow humans who are suffering - and those who are currently well who, unfortunately, may one day join our ranks.

In closing, I leave you with one passage from The Business Insider:

"Romney should pledge to funnel money into research organizations that could find the actual cause of this disease, and he could help stop its spread by addressing the causes of global climate change, the main reason the disease has reached so far and wide and continues to spread."

I wouldn't stop there. EVERYONE should pledge to funnel money into research organizations that could find the actual cause of this disease - and more importantly, effective treatment and testing for it.


Image Credit: Former Governor Mitt Romney giving an interview at a supporters rally in Paradise Valley, Arizona. December 6, 2011. Source: http://www.flickr.com/photos/gageskidmore/6468744615/. Taken by Gage Skidmore. This image is licensed under the Creative Commons Attribution-Share Alike 2.0 Generic license.

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0 WBUR Series: Living With Lyme

On June 26, 2012, WBUR, Boston's NPR (National Public Radio) station, 90.9, began publishing a series, "Living With Lyme", on their website.

The series of articles are accompanied by free downloadable podcasts and sometimes photos and slideshows. In addition to these articles, a live streaming video discussion on Lyme disease was broadcast on June 28 and is available online in its archives.

Additional Lyme disease related articles continue to be published on WBUR after the initial series was posted.

Here is a comprehensive list of all the articles published in the "Living With Lyme" series, from the oldest to the newest post:

Resource List - Lyme Disease:
http://www.wbur.org/2012/06/25/lyme-disease-resources

In Lincoln, It's Town Vs. Ticks:
http://www.wbur.org/2012/06/25/lyme-disease-lincoln

Map: Lyme Disease Cases In Mass., By Town:
http://www.wbur.org/2012/06/25/massachusetts-lyme-disease-map

A Long, Painful Battle With Lyme Disease:
http://www.wbur.org/2012/06/26/barbara-macleod-lyme-disease

The Debate Over 'Chronic' Lyme Disease:
http://www.wbur.org/2012/06/26/chronic-lyme-disease

What To Do If You Think You've Been Exposed To Lyme Disease:
http://www.wbur.org/2012/06/26/lyme-what-to-do

Why Your Dog Can Get Vaccinated For Lyme Disease And You Can't:
http://www.wbur.org/2012/06/27/lyme-vaccine

Some Cape Residents Worry Tourists Aren’t Taking Precautions To Prevent Lyme:
http://www.wbur.org/2012/06/27/cape-cod-lyme

How Much Lyme Disease Are We Living With?:
http://www.wbur.org/2012/06/28/lyme-prevalence

Lyme Disease Complicates Doctor-Patient Relationship:
http://www.wbur.org/2012/06/29/lyme-science-controversy

The Complexities Of Diagnosing Lyme Disease:
http://www.wbur.org/2012/06/29/diagnosing-lyme-disease

Emerging Tick-Borne Diseases Causing Concern In Mass.:
http://www.wbur.org/2012/06/29/tick-borne-diseases

For a series on Lyme disease, it is surprising how few patients have left comments on a number of these posts to date. It's been my observation that most of the time, patients participate in commenting on articles about Lyme disease and ticks far more frequently than this series has been responded to so far.

There are a few exceptions, such as the vaccine thread, which I commented on some days ago and which is still receiving more new comments. Sometimes the comments are more informative than the article itself, so they are worth a look. (Other times, they are educational only as a magnifying lens under which one can view other people's psychology... use your judgment, do your own research, and weigh the evidence linked to what people have to state.)

Here is the link to the Special Lyme Disease Panel Discussion (online streaming video):
http://www.wbur.org/2012/06/28/lyme-disease-panel

Panelists include:

• Dr. Thomas N. Mather, a.k.a. the TickGuy, conducts public education programs on tick-borne illnesses
• Rep. David Linsky, sponsored the bill that created a state commission on Lyme disease
• Dr. Sheila Statlender, a clinical psychologist and advocate for Lyme disease patients

And just today, an additional article was posted about tracking Lyme disease:

http://onpoint.wbur.org/2012/07/03/tracking-lyme-disease

A lot of thought-provoking articles to read at WBUR, with some thought-provoking comments in response. Check it out...

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0 Commentary: 20/20 And Needing A New Focus For Lyme Disease

This past Friday, the ABC program, 20/20, aired a show on medical mysteries. Included in this show were segments on people who fly into a rage at certain sounds (misophonia), eat rocks or other unusual non-food items (pica), and one on a girl with Lyme disease who is speculated by doctors to have developed a condition known as foreign accent syndrome (FAS) due to being coinfected with Bartonella.

While I have sympathy for everyone dealing with such conditions and hope everyone who was interviewed for the show gets better, what I'm about to write isn't about their personal interest stories.

Instead, I want to discuss how the media portrays the strange and unusual case to get higher ratings while other stories and information about tickborne infections are either downplayed or avoided.

On Dr. Phil's show several weeks ago, a young model was interviewed - a photogenic young woman who was having partial seizures and self-medicating to treat her pain. While there is evidence that people with Lyme disease can experience seizures, these cases are considered to be in the minority. In Friday night's 20/20 show, a teenager in high school who contracted Lyme disease and Bartonella was speculated to have developed a condition known as foreign accent syndrome (FAS). This is a documented condition, and while I think more evidence is needed to provide a link between Bartonella as its cause in this instance - FAS is even rarer than seizures are.

These stories are getting aired because the media tends to want to focus on the strange and unusual in order to grab viewers' interest and get ratings. The delivery must generate buzz and be sensational in approach in order to get traffic and fixed stares. And this is exactly what the promos for Dr. Phil's show on the young model, Stephanie, tried to achieve - as well as promos by 20/20's on Elaina, the teenager with FAS.

Most viewers at home seeing these shows are watching it because of the weird factor. They see the promo and want to know more, perhaps with their own internal dialogue of, "Wow, that's weird, I wonder how that happens - and does this really happen or is it just made up?" or, "Gee, that's messed up - glad it's not me. But I'm curious, so I'll watch." Some people just have a thing for watching other people's problems in general, and segments like these appeal to their nature.

For those of us who suffer from a disease that is portrayed on television, the first thing that happens is praise. The initial comments from the Lyme disease patient community are congratulatory. They contain the good cheer of finally getting more recognition for what ails us, those of us who have been suffering with chronic Lyme disease and/or coinfections.

And then, the next round of responses trickle in from other patients - a second wave which is not as cheery as the first and criticizes the shows for picking out one narrow and possibly rare symptom and putting it in the spotlight while the rest remain in the darkness.

Then the real, serious criticism gets rolling in the third wave, which is about how these shows will question the afflicted about the true nature of their condition and whether or not they are "faking it". From the perspective of a number of Lyme disease patients, this criticism could be heard regarding the exchanges about Dr. Phil asking the model if she was faking her condition, and in his not arguing against Dr. Auerwater's position that chronic Lyme disease is not a verifiable condition.

Indignant responses fly. Suddenly, what began as a great show for spreading awareness has become a show where a number of people see the value of airing it - yet admit it fell short of their hopes for letting people know what Lyme disease and coinfections are really like and what impact persisting symptoms have had on people's lives.

People just like them. People just like the guy next door, who was mowing the lawn one week and playing soccer afterwards - and now can't make the walk to his mailbox, let alone get to work.

As I see it, there has to be more of an effort in the media to offer education about what Lyme disease and coinfections are from a scientific perspective, and educate people on the most common symptoms which people will experience. From a personal interest perspective, more people need to see how these conditions affect middle class working adults with children of their own.

With this education, more people would be able to relate to the people on the screen and be willing to look into the possibility that they might have a tickborne infection and seek medical advice and testing. They would at least be alerted to the possibility.

With the edutainment of the strange and unusual offered, there isn't enough there for the viewer to grasp the possibility that they, too, may be suffering from this disease - or to know what signs to look for in the future if they do come down ill with tickborne infections.

If someone sees the story of a patient with partial seizures or FAS, they may shrug off the story and not apply it to their own experience of having joint aches, muscle pain, headaches, and blurred vision, and say to themselves, "Thank god I have fibromyalgia and eye problems and not Lyme disease or Bartonella - this stuff is weird". And maybe their current diagnosis is correct. However, there's a chance it's not. In which case, they are better off having the knowledge so they can decide to investigate another diagnosis.

The strange and unusual won't help viewers relate what they see on the screen to their own situation. Truly spreading awareness means educating people on the symptoms for conditions one is most likely to see. It doesn't mean that there aren't exceptions or that unusual symptoms can't occur. It just means that what most people with a given condition experience what one expects to see and to get based on the majority of cases which have occurred.

One more point about the media's focus and where I think it should be - then I'll go:

Why is it that we can easily find these sensationalized stories about unusual symptoms about Lyme disease - but there's seemingly little television coverage of what seems to be the most costly case of Lyme disease in the country - the Lyme disease contracted by senior banker Ina Drew, who worked at JP Morgan Chase, whose absence from work due to Lyme disease led to those remaining in the office making decisions leading to a $3 billion trading loss?

Yes, you did not misread that. $3 BILLION.

You would think this story would be pretty sensational and the media would put this on 20/20 and other shows right away.

There is the personal cost of Lyme disease to the individual. This the media does well to portray to a certain degree. But then there is the cost to their family, their job, and society as a whole. This has not been portrayed that well. It needs to be.

 Image Credit: Peter Wolber

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3 Commentary: Critical Mass In The Media On Lyme Disease

It's April, and it's already that time of year again for Lyme disease: The media has been stepping up its coverage of Lyme disease related news items in preparation for May, which is Lyme disease awareness month.

For example:
Health Department Issues Warning About Ticks (Ohio)
10 Tips To Beat The Ticks (msnbc)
Lyme Disease Is On The Rise In New Jersey And Pennsylvania
Arkansas On Track For More Tickborne Illnesses This Summer
Scientist Says Lack Of Acorns May Mean More Lyme Disease In Maine
Minnesota: State's tick season crawling to an early start
Tick bites on the rise in Central Florida, county says
Tick season gets an early start (Iowa)
It's tick season in Lake, Mendocino counties (California)

Canada has been getting in on the action:
How to prevent disease infection after research finds Lyme-carrying ticks are on the rise in Canada
Toronto: Climate change causes Mississauga infestation
Tick season is here (Kamloops)

And also the BBC in the UK:
Great outdoors? Ticks, pets and the risk of Lyme disease
Seeking to solve the Lyme disease puzzle

All these links are to articles I just grabbed off Google News in a matter of seconds. There are so many news items listed that I could not mention them all and just selected links representative of the fact that  Lyme disease is getting more attention across the United States and the northern hemisphere in general.  If I search further afield, I'm sure I could include links from France, the Netherlands, Germany, and other countries.

This year, I noticed that the news cycle has been slightly different. The media has been discussing that tick season was going to be earlier than usual and worse than usual when it was just barely into the new year. And with this has come more stern warnings to the public to protect themselves from tick bites and prevent infection.

The media has been on top of things, it seems. How about me? As someone who has suffered from Lyme disease and coinfection, I've been thinking about my own role in how to participate activities related to this year's Lyme disease awareness month.

Last May, I wrote a series of articles for The Daily Kos for Lyme disease awareness month. Time is obviously running out to decide whether or not to write again this May, and I am leaving the decision to the last minute just as I did the previous year.

I think traditionally calling attention to Lyme disease prevention in May has made sense. But I can't help but think that being aware of all tickborne infection throughout the entire year is a better approach.

One reason why is because the world is changing. Global warming and fluctuations in the ecosystem can lead to different tick breeding times and infection patterns. Local microclimates and winters which are milder on average can lead to peak cases of Lyme disease being reported in autumn and early winter - as they have been reported in California and parts of Oregon. And if Australia turns out to have its own increase in Lyme disease cases which run according to their seasons, then timing for prevention and education would differ from North America by six months.

Another reason why is that it doesn't hurt to put the message out there all year round is because more people are likely to hear it and be aware about the potential problems tick bites can bring before they are in circumstances where they are more likely to get bitten...Hopefully they won't get bitten at all.

Any month where people are going to be going outdoors and placing themselves in environments where they are likely to encounter ticks is a month where one should take the steps necessary to protect themselves from tick bites.

My own basic online version of tickborne disease prevention education
has been this page: http://campother.blogspot.com/2011/06/video-tick-removal.html

It has two videos - one an animation about preventing oneself from being bitten by a tick and another about how to create your own tick removal kit.

Overall, I think there is a fair amount of information available about prevention and avoidance of Lyme disease and other tickborne infections. And it's good to repeat this information and give people reminders.

The Fear of Taking It Too Far?

From my own personal perspective - after years of reading articles about the prevention and avoidance of ticks - I'm in a position where I'm trying to figure out what seems to be the opposite problem: how not to go overboard in preventing and avoiding tickborne infection.

And it is a good question: What exactly is going overboard when one has had their life changed entirely (and not in a good way) by having contracted a tickborne infection? Some people might argue there is no such thing as going overboard.

I know it's possible that some day I could be hiking and get bitten by a tick again. That concern is real. The fear behind getting another infected tick bite is real. And I have asked myself, "Do I really want to hike again?"

Hard question. But it's still difficult to say no. In terms of risk reduction, I would rather give up living with a pet than give up spending time outdoors.

I love the great outdoors, and I miss hiking and camping - two activities which put me at the most risk for tick bites. I'm not doing either these days due to fatigue, pain, and lack of stamina. But if I were to suddenly become completely well again, I would have to think twice about how I could return to these activities and remain unscathed by ticks.

There has been a sense of loss that comes from not engaging in activities I once used to do all the time.  Hiking was a walking meditation for me that worked better than sitting in a crowded room full of people doing yoga poses. And cheaper, too.

Out in the woods, I could be alone with my thoughts and close to the earth. I could get in tune with my body and push its limits without anyone watching. I could stretch my muscles, climb rocks, and see how far I could go.

Today I feel weak and broken. I miss feeling stronger. I miss being out in nature, in the elements, encountering wildlife.

I also miss sitting near a campfire, eating and drinking with friends while telling tall tales and bad jokes... It's amazing how much I took for granted that I now miss.

I've figured out that there are things I could do to ease back into the activities I love to do while lowering my risk. I could focus on cycling, swimming, sailing, canoeing, scuba, urban walks, and hiking and camping in rocky mountainous and desert areas where ticks are far less likely to be encountered. It might take more advance planning to do some of these things - but time outdoors wouldn't have to stop. Activities may just need to be modified to alleviate my concerns.

But all this is only going to happen once I am well enough and have energy enough to do these things at all.

Shifting From A Narrow Focus On Fear Of Ticks To Action On Chronic Lyme

From where I sit, I think the awareness message has to be broader than "ticks are out there, they carry nasty infections, protect yourself from their bite"... I think the message has been getting out there, little by little, that if one does get bitten that early diagnosis and treatment is crucial.

But the bigger message which has to get out is that more research on preventing and treating late stage chronic Lyme disease is needed because this is the one aspect of Lyme disease which is the most damaging (and controversial) of all.

The science needs to be brought to public light from those who are up to their ears in it. I'd like to see more researchers being interviewed and not just patients. I'd like to see doctors discussing how much - and how long - these infections can affect one's quality of life. I'd like to see various people discuss the Embers' study on national TV. I'd like to see someone have the balls to actually discuss whether or not there can be a persistent infection in Lyme disease and mention all the studies which have been done to date on both - or rather, all - sides of the fence. I'd like to see a genuine open scientific debate.

I see it as I call it, and how I see it right now is that the dialog about Lyme disease needs to be taken past the human interest story and past the public health department's annual warnings about increasing cases of tickborne infections. A good move in this direction has been discussing the impact of global warming on the spread of ticks. An even better move would be to discuss what we can do to stop the most serious impact that Lyme disease has on us, our families, and our pets in the form of chronic and persisting symptoms.

A call for more research is needed. A call for more young people to study microbiology and immunology to better understand tickborne infections is needed. A call for more surveillance in new latitudes is needed. A call for more detailed public education on Lyme disease is needed. And a call for more serious candid discussions from the media - and not just daytime TV sensationalism - is needed.

How do we get from here to there? If I have any role in this, then it's going to have to be directed towards answering this question - whether it's May or not.

Image credit: © Jarek Tuszynski / Wikimedia Commons / CC-BY-SA-3.0 & GDFL

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6 Commentary: On Dr. Phil, Lyme Disease, And "Faking It".

Yesterday a segment about chronic Lyme disease aired on the Dr. Phil Show. There's been much discussion about this episode online throughout the Lyme disease patient community, and so far comments by the hundreds have been posted rapid fire to Dr. Phil's web site about chronic Lyme disease.

I am in support of seeing more coverage on Lyme disease and patients with persisting symptoms, but I am not in support of seeing the angle of hypochrondria or "faking disease" being mentioned - even in passing - in relationship to Lyme disease.

The issue of whether or not a patient is faking their symptoms came up during an interview with a 25 year old model, Stephanie, who is experiencing unusual attacks and symptoms - and who has been accused of behaving this way in order to get attention.

While I do not know all the details of Stephanie's medical history, I would be one of the last people to accuse her of faking her symptoms to get attention. I say this in part because if she has suffered with these symptoms for five years* and hasn't been getting out much due to her condition - then like myself, she's probably discovered that after that period of time other people will stop inviting you to events. Some may not even visit.

Being a model equates with an active social life, attending events, and self-promotion. Getting plenty of attention lands you work. Becoming sick and spending most of your time at home kills your career and leads to isolation. There is little to gain there, and any initial sympathy which might be gained wears thin after the first several months. People will move on without you.

Having suffered the personal costs of isolation due to chronic illness myself, I have sympathy for her situation. And I am appalled that the first thing Dr. Phil would ask was not what evidence she had that she was suffering from Lyme disease - but to ask whether or not she was faking her symptoms.

While I disagreed with her method of self medicating, it is clear to me that she has been suffering. I've never experienced what she is calling seizures - however, earlier in my illness I had episodic attacks of severe pain which would cause me to curl up, wince, and yell with pain.

The pain was so intense there was nothing else I could do. It often happened when I was alone in bed and everyone else was out of the house. If someone wanted to accuse me of a payoff for my behavior, it wasn't coming.

It seems to be a running theme over time - this concept that if one is ill with a condition that is not easily understood or for which tests have not been well developed - then somehow the patient's symptoms must be "all in their head," or the patient must be "making it all up".

And that if a patient behaves in an unusual manner, accusations fly that they must be acting out, with others suggesting that "perhaps they have a psychological problem," or  "perhaps they just want attention."

I can't think of how many times I've heard these statements made about someone with certain medical conditions - usually conditions where the person physically appears normal to others at least some portion of the time, and isn't showing an overt sign of illness or injury.

Patients with a broken leg or weeping sores are not accused of hypochrondria or of "faking it". When a physical symptom is a daily constant and is taking time to heal, it's a concrete visual reminder to others that a person is not well.

But if someone has lesions on their brain, only their radiologist who took the MRI saw it. No one else can see them.

If someone has extreme fatigue, only they know what the experience is like to be feeling the heavy weight of that burden on their body all the time - while everyone else just sees them as someone who lies on a sofa or in bed all day and might judge them as being lazy.

If someone winces in pain at someone else turning on a lamp or children talking and laughing animatedly, everyone else may see them as being overly sensitive without knowing the experience of the person for whom sounds seem three times louder and light five times brighter.

People understand what they themselves have experienced, and people understand what they can see. Many people joke about using the Missouri license plate motto as their own personal mantra: Show me. They don't believe in something's existence unless they can see it or experience it firsthand.

But anyone with an ounce of scientific reasoning and logic can see that just because one cannot see something or experience it firsthand does not mean it doesn't exist. One can detect the presence of some agent or phenomenon through indirect detection. Much like antibodies in a blood test, one can determine infection is present without detecting the causative organism itself.

In the mid-1800s, doctors and others believed that patients' exposure to bad air in hospitals are what lead to infection in wounds. Washrooms for doctors' hands and patients' wounds were not available. Washing hands before seeing a patient was not considered necessary to avoid infection - the idea never entered one's mind.

One doctor, Dr. Joseph Lister, learned about Louis Pasteur's research that rotting and fermentation could occur under anaerobic conditions if microbes were present. By learning more about Pasteur's hypothesis as to what could prevent rotting and how this might apply to infections, Lister decided to conduct his own experiments. Even though he could not see the microbes themselves he could see the results of his research: antiseptics prevented infections in wounds fron taking hold.  

Lister went on to encourage doctors he supervised to wash their hands before surgery and use antiseptics - even though at the time doctors thought it was unnecessary and a joke at first. Nonetheless,  as time went on, others began to adopt his practices and went on to prevent many cases of infection and sepsis.

For centuries, scientists hypothesized that extrasolar planets existed. But it is difficult to directly detect them. Most extrasolar planets are detected through indirect detection methods such as measuring radial velocity or the Doppler method, by observing the drop in brightness emitted by a distant star due to a planet's transit in front of its disk, and by using several other methods. In astronomy, one can observe a number of planetary bodies' presence through the use of inference. By looking at different stars, we can infer something about the planets orbiting them - even if we can't see the planets with our own naked eye - or in some cases, even with a telescope.

These are just two examples where inference leads to association and discovery.

But here we are, in 2012, and it seems that the power of inference is somehow broken in doctors and neighbors who leap to the conclusion about patients who have symptoms they do not understand or which they have trouble offering an official diagnosis.

Like the doctors who believed patients were getting infections from bad air in the hospital without any particular data to support their conclusion - some doctors today are making snap judgments that patients' symptoms are due to their own neurotic imaginings.

The truth is, it might not be that easily determined why it is some patients are having the symptoms they do.

Instead of saying these three words, "I don't know," when there is no quick answer as to why a patient has particular symptoms, some doctors readily fall back on a psychological cause. Often without any particular training in psychology. Often without any psychological and neurological testing of the patient in front of them. Often without any rule-outs to determine if some underlying medical condition could be contributing to their patient's symptoms.

And sometimes, even with training, there is a risk their diagnosis is wrong. Because if one doctor looks through the same lens of his own area of specialization every day, sometimes it's difficult to consider presentations from a different angle.

While the debate about the cause continues, the recent outbreak of a strange rash of illnesses in upstate LeRoy, New York, could be one example of making a snap judgment based on a psychological condition.

A group of young women (and as it turned out later, one young man who didn't know them) in high school began exhibiting strange behavior last year. They have had unusual tics and verbal outbursts similar to those found in Tourette's syndrome.

They were taken to various medical professionals to be interviewed and examined, and the initial diagnosis which was offered was "conversion disorder". Conversion disorder used to be previously known as "hysteria", and before Freud used the term, hysteria was associated with people who were malingerers, had weak nerves, or had some meaningless disturbances. No reason for these behaviors was ever given back then beyond having poor character or a weak constitution.

Today, conversion disorder is not the same thing. It's not thought to be due to malingering or feigning illness - it is a genuine psychiatric disorder which is not related to any underlying neurological or infectious cause and is rooted in extreme stress and anxiety. One could argue it is a physiological and biochemical response to stress.

But given its psychological origins, some parents disagreed with this diagnosis outright - and feeling that their own kids could not have this disorder, they sought second opinions. With further investigation into biological causes for their symptoms, one doctor diagnosed a young woman in neighboring Corinth, New York, with Lyme disease and is apparently evaluating some of the students from LeRoy.

Today, months after the original outbreak, debate over what exactly is the cause of all these students' unusual symptoms has continued. One physician who treated some of the girls classified the disorder as PANDAS, related to streptococcal virus. Some of the girls got better under treatment for PANDAS. Some have not. Some doctors do not even think all the students suffer from the same condition as their individual presentations are somewhat different.

Where can anyone rest with this, with the knowledge that people that exhibit unusual behavior may not have it "all in their heads" and are not "making it up"?  And that similar symptoms might stem from different causes?

One must appreciate that sometimes it takes time to sleuth out the proper diagnosis. But one must also begin to appreciate that it is way past time to stop discriminating against people and labeling their motives and essential character as human beings if they engage in unusual behavior - whether it began with a traumatic experience or a tick bite.

Even if it turns out some of these young women have a disorder which was triggered by extreme stress, that does not mean they are faking it. It would be a genuine medical problem that requires treatment, just as PANDAS and Lyme disease need treatment.

From the infectious disease angle, this is not the only item to hit the news in recent months which brought up discussion about the possible relationship between bacteria and behavior.

Researcher Jaroslav Flegr has been investigating the relationship between infection with toxoplasmosis in people and their behavior, and already found some significant relationships. The psychological symptoms caused by toxoplasmosis are usually more subtle, so far, than what has been observed in these young women with tics and vocalizations - but they are further evidence that it is not always going to be clear if we alone are driving our behavior - or if a visiting microbe onboard is.

Other mental illnesses have been investigated for an infectious cause, such as schizophrenia - and various viruses and microbes have been implicated in or associated with its development.

Regardless of whether one diagnoses a patient with a psychological disorder or a physical condition, all of this should make us stop for a moment and think about how we as a society think about mental and physical illness in this country:  The gap between what is a biologically-based illness and what is a psychologically-based illness is closing and becoming blurred. With this change, greater acceptance and understanding of those with symptoms which affect them cognitively, neurologically, and psychologically is bound to occur.

It's been a long slow climb to work to remove the stigma that comes with mental illness in the United States. And it continues in part because of a tendency to believe that everyone has control over their own behavior. Tied very intimately to that idea is a belief that everyone has control over their bodies as well. Which is nice and a comforting thought to have, and most people who are completely healthy live with the privilege of this experience without ever experiencing anything else.

But once you have become incredibly ill, it becomes clear just how much is not under one's control. If you get into a car accident and have a spinal injury that is obvious to everyone, no one can ever tell you how long it will take to completely heal from your injury. Often it isn't clear if you'll completely heal at all.

The same applies to people who have been affected mentally - and not by choice, any more than the person who injures their spine in an accident. People who were healthy and "had it all together" can fall victim to an infection, genetic and environmental factors, temporary or permanent side effects of prescription medication, a car accident, or other traumas which leave them both physically and mentally affected.

The results are not something that is "all in their head" - if that phrase is meant to apply to an idea of them imagining it. On the contrary, having an infection or trauma which affects your brain is literally "all in your head" - and is in no way, shape, or form, imagining it. It is a harsh reality one must live with every day. It will mean not having control over your behavior and reactions to certain stimuli such as noise, light, the sense of touch, music, scents, the taste of certain foods, and then some.

To the outside observer, these reactions may seem strange. And even by the person having them, they are, and they are often aware their own reactions are atypical. But to the person who is living with them, it is what they have to live with and work around.

Antibiotics or other medications may bring their reactions under control and help. It may make life more predictable for those affected and those close to them who witness their behavior. And if anything, people who observe the change which occurs under such treatment over time should grasp that their symptoms have been due to their being ill and not because they were trying to get attention.

In regards to the practice of telling patients that a condition is imaginary, I have hoped that by 2012 we would have gotten much further by now and stopped this practice.  That we wouldn't be seeing young women in the prime of their lives with careers and hopes for the future lose all that and be told that their symptoms are only about trying to get attention by being sick.

It reminds me of stories of doctors who accused women back in the late 1800's of suffering from "hysteria" when they may have had multiple sclerosis. It reminds me of stories of doctors who accused patients in the 1980's through the present that it was "all in their heads" when they have CFS/ME. It reminds me of stories of doctors who today are saying those with chronic Lyme disease are "faking it" and aren't really sick - or perhaps they are depressed.

No doubt, depression can be a serious and debilitating condition in its own right which requires medical treatment and cannot be solved just by pulling oneself up by one's own bootstraps. We've moved beyond some of the stigma attached to depression and understand today that it is not a sign of poor character or laziness. But let's be sure to not confuse one disease or condition with another just because some of their symptoms overlap.

All this said, it is clear to me after having done extensive research on Lyme disease that everyone who has persisting symptoms related to Lyme disease after a tick bite and its initial treatment is not well. It's not "all in our heads"- even if for some of us the damage may be literally in our heads.

Lyme disease affects each of us somewhat differently - some of us have more neurological, cognitive, and/or psychological manifestations of disease than others. Given the pathogenesis of this disease, these differences should be no surprise: without early treatment during the acute stage, Borrelia bacteria disseminates throughout the body and can affect different organs and tissues - and at times, affects the nervous system, too.

Even if one does not believe in a model of chronic infection after initial antibiotic use, there is no reason to doubt that someone affected by this disease would have some damage done by its presence. This damage can lead to all kinds of problems of varying frequency and duration - damage which doctors should be well aware of and be attentive to just as they would for other medical conditions.

The effects of Lyme disease on people - particularly disseminated and late stage Lyme disease - are real and variable. Even if it becomes a post-infectious autoimmune condition, the damage done is real. The resulting symptoms need to be dealt with effectively. Medical societies and professionals need to step up to the plate and recognize them rather than write them off as imagined.


Related items of interest:


Dr. Phil Show In Three Parts - See the entire segment on Chronic Lyme disease.
Emory University Center for Ethics on an explanation that psychiatric illness is not imagined but a real condition - plus a mention that there is growing evidence of a biological basis for psychiatric disorders.
Economist on the pros and cons of toxoplasmosis.

* Stephanie, when interviewed on the show, stated she has had symptoms on and off for five years. According to her Twitter account and other online resources, she had a turn for the worse beginning in October 2011 and has been consistently ill since November 2011. So she hasn't yet been seriously symptomatic for the same period of time I was - let's hope she isn't.

Image Credit: 
Sick Girl, 1910 (Poland) - From commons.wikipedia.org under US-PD license.

This work by Camp Other is licensed under a Creative Commons
Attribution-NonCommercial-ShareAlike 3.0 Unported License.

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