Sunday, November 17, 2013

5 On Stephen Hawking, Disability, and Capability: What Are Limitations?

A few months ago, I read an article in The Telegraph about a doctor in the UK who made a statement about how people who receive disability benefits should not because if Stephen Hawking could work, then pretty much everyone could work.

The Telegraph quotes Dr. Peverley, who practices in Sunderland, England:
“We are, as a profession, dedicated to making our patients as healthy as possible, and yet a proportion of punters are hell bent on trying to prove they’re really ill, and need us to confirm it." 
“The fact is, nearly everyone is capable of some kind of work. I had considered, at one point, putting up a portrait of Professor Stephen Hawking in my consulting room with a caption that said, ‘This bloke is not on the sick’.”

Dr. Peverley is one of a number of doctors and politicians who have been engaged in a strange war on the disabled in the UK. This war began during Prime Minister David Cameron's term in office, and has been reflected in the hiring of private firm, Atos, to complete disability assessments on new patients and reassess those already disabled for the purpose of getting them off a disability pension and put them back to work.

In theory, getting people with disabilities back to work who are capable of work sounds good. One problem is, though, that Atos doesn't appear to be doing a good job of determining just who is eligible to work again and who should remain on a disability pension.

Since 2008, Atos has conducted more than 1.5 million disability assessments. However, during this time there have been more than 600,000 appeals at a cost of £60 million. A number of these appeals were based on reevaluations of disabled people who were in fact still quite disabled, but their new evaluation forms were filled with erroneous or incomplete information which did not characterize patients' degree of disability properly.

One doctor, Dr. Greg Wood, who used to work as an evaluator for Atos became a whistleblower. When interviewed by the newspaper he revealed that he had been not only encouraged - but ordered - to downplay the severity of patients' disabilities or misstate their limitations so as to get them off the disability pension rolls.

Which brings me back to Dr. Peverley. Dr. Peverley sounds like the kind of doctor who would comply with whatever Atos asked him to do in order to get patients off disability and return them to work, no matter how sick or how poorly suited to work they would be.

The Telegraph article later states, regarding Dr. Peverley:
He said that being declared “fit to work” did not mean patients had to do a laborious job.

“Being found fit for some kind of employment by Atos does not mean you’re necessarily capable of being an FBI agent or a lumberjack”, Dr Peverley said.

“However, you might be able to work at a desk on a telephone, or hold a lollipop on a zebra crossing."
On one hand, he makes a good point: Many people with disabilities and chronic illness can do something and many are not completely incapacitated. They may be disabled in some way, but they are capable of completing a task.

On the other hand, he entirely misses the point that being able to work at a regular, part time or full time job is not just about being capable of doing a task once or even here and there - it's about being able to consistently perform certain tasks repeatedly on a regular basis, typically daily, often at long stretches of time without a break. And to do so in a workplace which may only allow you a minimum of flexibility in your work hours and may or may not permit you to work from home at all.

Stephen Hawking, in a short BBC interview about his autobiographical film, Hawking (by Vertigo Films - not to be confused with the film, Hawking, starring Benedict Cumberbatch)discusses his own disability and his view of it includes acknowledgments which Dr. Peverley does not make:

Stephen Hawking acknowledges that in his situation, he was very fortunate that his disability in some ways has been an asset which allows him to avoid teaching or attending more boring committee meetings so he can spend more time doing his own research on theoretical physics. He admits that because he cannot talk to people quickly, he tends drift off on a mental tangent about some aspect of physics while around other people. He also acknowledges that with his kind of disability, it has not been a drawback to working in his field because he can do theoretical physics in his head. His physical capabilities aren't necessary to do his work.

Stephen Hawking recognizes his good fortune despite his misfortune - of this it's quite clear. And it's this message he wants everyone watching to hold on to. But he also states that some of his good fortune has been due to the support and love of his family and friends, his upbringing, the opportunity he had to get a solid education until his physical condition began to deteriorate, the care he received for many years from the National Health Service, and the fact that his condition has been a form of motor neuron disease which has given him a chance to go deep into his mind to explore new concepts while outliving doctors' expectations about his lifespan.

It might have been more traumatic for Stephen Hawking to have lost his cognitive capabilities than it was to have lost his physical capabilities because his life up until the point his condition began to worsen was already about academia, about learning and innovative thinking.

Only Stephen Hawking can really say what his choice would have been if it were given to him - I'm just guessing. But it's very clear that his complex internal mental world is where he lives, works, and plays - and if that were to be cut off from him, depression and losing the will to live might follow. This world is a big part of who he is.

Stephen Hawking is visibly physically disabled. And yet he has certain abilities others with different disabilities do not have: He can see, hear, communicate with others on and off the internet, and think clearly and rationally. He can create whole models of the Universe inside his head. He can sleep 8 hours a night, wake up refreshed, and get around with the assistance of a wheelchair and a personal assistant. While he is physically impaired, others act as his physical extensions to care for him - whether it be eating, bathing, dressing, or using the toilet. With such support, he can focus on his work.

But just because Stephen Hawking can do what he does does not mean all people with disabilities and chronic illnesses can do what he does. No one would expect someone with short term memory problems and difficulty learning and retaining new information to be able to explore problems of theoretical physics in their head any more than one would expect Stephen Hawking to start washing windows and painting the trim.

I can think of any of a number of disabilities and chronic illnesses which could impair people to the degree that a regular part time or full time job would be impossible for them. Those with severe anxiety, severe depression, bipolar disorder, or PTSD can be so overwhelmed by managing their condition that at times it is enough work just to get through the next hour - let alone day or week. Those who have cancer and have many side effects from chemotherapy and fatigue may not be able to work. Those who have frequent flareups of autoimmune diseases or have conditions which require multiple surgeries over time and recoveries and/or multiple regular tests and scans every week or two may not be able work. Those who have more than one medical condition to manage may end up spending so much time and energy in their management that it would interfere with working.

Some disabilities and illnesses get in the way of accomplishing things in a number of spheres in life more than others. Some disabilities and illnesses are more disruptive or have the potential to be more disruptive than others for holding down a regular job with regular hours and regular deadlines.

It is this last bit around which I think Dr. Peverley - and those like him - has a blind spot: The issue of employment being contingent upon consistency and reliability.

When it comes to someone being disabled or chronically ill, their capability and consistent ability to do work is different from their disability or illness. In the UK, the 2010 Equality Act defines disability as “a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.” This definition covers a wide range of conditions, from mental illness and learning disabilities to chronic physical illness and long term physical impairments.

Sure, someone with moderate myalgic encephalomyelitis, fibromyalgia, or chronic Lyme disease might be able to hold up up a sign as a crossing guard for a few minutes one day. But can they do it for the next fifteen minutes? Can they do it for three hours a day? Can they do it for three hours a day, five days a week, for ten months of the year? If they can't - and an employer witnesses that their crossing guard begins to fail to carry out this supposedly easy task (easy for whom?) by leaving their station early or calling in sick too many days in a row, then they will not be a crossing guard for long.

Even if this crossing guard job were a job one could do, how on earth could it provide the disabled or chronically ill individual with enough financial support to keep a roof over their head? In all reality it can't, and so even if one could work 15-20 hours a week, within one's maximum capacity for work under the best of conditions, the wages earned from being a crossing guard are small. Anyone doing such work would need additional forms of support. And even if the disabled and chronically ill individual were to be capable of this type of job, one has to consider as an employer, if your employee will be capable of doing such job for at least an intermediate length of time if not the long run - and if one is a disabled or ill employee with such job, whether doing such a job with such frequency will have a negative impact on one's health.

The same applies to Dr. Peverley's assumption about anyone with a disability or chronic illness being able to hold down a desk job. Maybe some people with disabilities or chronic illness can. Maybe some people can't. In this Telegraph article, Dr. Peverley makes it sound as if everyone can and this, again, brings up the same issues that the crossing guard job has: Someone could have trouble sitting for long periods of time due to pain and fatigue, someone could have trouble consistently performing other duties required of the job due to their individual disability or illness.

In all of these situations, Dr. Peverley overlooks two realities:

One is that the way most work is organized is that there is a daily routine and expectation where - no matter what the job is - employers want employees who will be able to show up to work on time, work at a consistent level, leave work at a certain time (often later than originally intended), work day in and out, and meet deadlines at regular intervals.

Two is that in many ways, being disabled or chronically ill can interfere with this very structure of expectations and routine around which work is organized, and because of this, employers who fear the disabled or chronically ill will not meet expectations can either discriminate against hiring those who are visibly disabled or chronically ill, and/or more easily let go of employees with disabilities and chronic illnesses if simple accommodations aren't enough to help the employees accomplish their jobs under existing terms.

The missing piece that would help empower more disabled and chronically ill people enter the workforce that is currently not part of our modern workplace culture is to adapt jobs and adapt workplace infrastructures to accommodate the person who is disabled and/or chronically ill - not the other way around.

The situation for many disabled and chronically ill people is that they may not work at their best under circumstances which are normal and typical for the average able-bodied, healthy worker. In order to empower those who can work to some degree, the best accommodation comes from acknowledging the person with disability or chronic illness' circumstances and work with them to create a suitable position and environment.

In this respect, Stephen Hawking has the kind of support that many people with disabilities and chronic illnesses do not: Throughout the film of his life, people value Hawking's opinion and ideas and bend over backward to accommodate him, with graduate students often also serving as personal assistants early in Hawking's career. As time goes on, hired nurses and assistants take their place. Personal care, assistive technology, and Hawking's research position are all created specifically to support him in doing his work as much as it is possible - rather than having Hawking be given only a few accommodations which might make the simple act of living possible.

People with disabilities and chronic illnesses who could work and contribute something to society are better able to contribute if society as a whole begins to integrate a concept of working with disabilities and chronic illness into existing economies and workplaces. Workplaces and technology can evolve to create jobs which empower those with disabilities and chronic illnesses to work as much as it is possible.

Rather than have the standard job with typical requirements and routines, jobs would have to be created which disabled and chronically ill people can do which do not rely on consistency or on meeting deadlines at regular - often short - intervals.

Jobs and workplace infrastructures would have to be created which can flex around the circumstances of a person's reality, strengths, and weaknesses - rather than to try to shoehorn the disabled or chronically ill person into a job and workplace which permits a few small changes that help accommodate the person to try to work at the job in the same way able-bodied and healthy people do.

The support should be there to accommodate people in reaching goals whether or not they conform to standard workplace expectations. And not to do so in order to make the Dr. Peverleys of the world shut up and feel righteous about their idea that those with disabilities and chronic illnesses should be able to get off disability pensions and work - but to empower anyone to pursue goals, to follow dreams, to have some hand in supporting themselves and having a sense of a future despite the cards they've been dealt.

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Monday, November 11, 2013

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.]

Creative Commons License
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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Monday, November 4, 2013

6 Meta: Post of Upcoming Post Topics

It's been a few weeks since my last post, and I would like to get back to blogging on a regular basis. How regular remains to be seen but certainly more than once every 6 months, which has been the largest gap between entries since I began this blog.

I haven't blogged much this year for a variety of reasons. One reason is that there has been a lot going on in real life, so in my virtual life I took to tweeting more and writing at length less. Another is that I've been exhausted, and writing at length hasn't been coming as easily as it has other times.

So I have taken a break, even if that meant having to put off writing a number of posts which I originally intended to do. I think it was necessary to take a step back and use my energy elsewhere for a while - including discussing tickborne diseases in other venues outside of this space.

I'm hoping to make a reentry and post more often as it works for me. It's going to be an experiment to see how frequently I can manage it because I can't predict what the future is going to bring between happenings in my life and the status of my health, but I want to give it another try even though at times I feel like no one reads this blog (though clearly they do, as Blogger's stats indicate several thousand pageviews each month even if I don't post anything in a long time) and few people comment lately.

My intent is to begin working through these topics, order to be determined:

  • Thoughts on the trailer for the film, Canary In a Coal Mine, and how the film may differ from Under Our Skin

  • Thoughts on the difference been disability and capability and where they intersect

  • The "it's all in your head" diagnosis: why it does everyone a disservice and can even be deadly

  • So about that 10-20% of Lyme disease patients with persisting symptoms after initial treatment...

  • Individual issue posts in response to the anti-science letter Panel 1 items:
    • Sexual transmission of tickborne diseases: Is there evidence?
    • Whether or not Lyme disease Borrelia are restricted geographically
    • Subjective versus objective symptoms in Lyme disease
    • Lyme disease as a trigger for other conditions
    • How common tickborne coinfections are
    • The pathobiology of Borrelia burgdorferi (this may be 3 separate posts)
    • Serological testing and its value in diagnosis when there is no EM rash
    • The use of IgM testing 
    • Serological sensitivity in Lyme disease based on gender
    • (Will not be addressing treatment topics on this panel at this time.)

  • The who, what, where, how, and why of blogging here: Should the focus change?

So, I have a number of posts here I would like to write, and hopefully the energy and focus can be found to move forward.

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Friday, October 11, 2013

13 24 Hours Of Attachment Is An Estimate - Not a Safety Blanket

By now you may have heard the news that the CDC announced that there are over 300,000 estimated cases of Lyme disease in the United States each year.

For many people, this estimate came as a shock, but it really shouldn't be - the CDC itself has stated in the past that reported cases are a fraction of actual case numbers - especially in highly endemic areas - and researchers have also stated a case count of 30,000 was an underestimate.

Many Lyme disease patients and advocacy groups felt vindicated by the announcement, as it confirmed their position that the number of people contracting Lyme disease was always much larger than official numbers which were originally reported. The below chart, for example, was created by Open Eye Pictures, which produced the controversial film on Lyme disease, Under Our Skin:

Lyme Disease in the US as of 2009 - 0ver 461,000 estimated cases
Click to zoom in for a closer look.

Open Eye Pictures created this chart back in 2011, based on data directly from the CDC but without direct access to the insurance study, patient survey, and other information the CDC used recently to adjust their new estimate to 300,000 annual cases of Lyme disease. As one can see, their estimate managed to come pretty close to the CDC's - if not potentially higher.

With this announcement, news outlets, park rangers, and medical experts began warning the public once again to take proper precautions to prevent tick bites and to do body checks for ticks after being outdoors.

Some are also informing people that if they don't spot a tick right away, not to worry - if a tick is removed properly within 24 hours, it is highly unlikely to transmit any tickborne disease.

While there is truth in that statement, unfortunately it isn't exactly accurate and doesn't cover all kinds of ticks and any tickborne infections they might be carrying.

This chart shows only a small fraction of tickborne infections currently known to be pathogenic to people along with their transmission times (and in some cases, typical attachment times):

Sample of Well-known and Newly Emerging Tickborne Diseases in North America and Europe and Their Estimated Transmission Times

Tickborne Infection
Tick Species
Estimated Transmission Time
Upon Attachment
Lyme disease BorreliosisBorrelia burgdorferi sensu strictuIxodes scapularis,
Ixodes pacificus
North America36-48 hrs;
24 hours or more;
potentially less 
Borrelia burgdorferi Ixodes ricinusEuropeLess than 24 hours
Borrelia afzeliiIxodes ricinusEuropeLess than 24 hours
Borrelia gariniiIxodes ricinusEuropeLess than 24 hours
Relapsing Fever
Borrelia miyamotoiIxodes scapularis, Ixodes pacificusNorth Americaunknown
Ixodes ricinusEuropeunknown
Borrelia turicataeOrnithodoros turciataNorth America30 seconds with a total tick attachment time 15-90 minutes
Borrelia hermsiiOrnithodoros hermsiiNorth America30 seconds with a total tick attachment time 15-90 minutes 
Human Monocytic EhrlichiosisEhrlichia chaffeensisAmblyomma americanum, Ixodes pacificus,
possibly Dermacentor variabilis 
North America12 to 24 hours 
Human Ewingii EhrlichiosisEhrlichia ewingiiAmblyomma americanumNorth Americasuspected 12 to 24 hours
(formerly HGE)
Anaplasma phagocytophilum (formerly Ehrlichia phagocytophilum)Ixodes scapularis, Ixodes pacificus, Dermacentor variabilisNorth America12 to 24 hours
BabesiosisBabesia duncaniIxodes pacificusNorth America24 to 36 hours
Babesia divergensIxodes ricinusEurope24 to 36 hours
Babesia microtiIxodes scapularisNorth America24 to 36 hours
Rocky Mountain Spotted FeverRickettsia rickettsiiDermacentor andersoni, Dermacentor variabilisNorth America4 to 6 hours
Q FeverCoxiella burnetiiDermacentor
andersoni (rare*)
North Americaunknown - suspected fast as highly infectious
Ixodes ricinus, others  (rare*)Europeunknown - suspected fast as highly infectious
Powassan Virus or Powassan EncephalitisLineage 1 or 2 FlavivirusIxodes cookei, Ixodes scapularisNorth America~15 minutes
Heartland VirusGroup V PhlebovirusAmblyomma americanumNorth Americaunknown
Tickborne Encephalitis (TBE)Flaviviridae FlavivirusIxodes ricinusEuropeWithin minutes

* Q fever is usually transmitted to people by exposure to contaminated raw dairy products, inhalation of aerosol fluids from pregnant animals, blood transfusions, and in utero. Tickborne infection with Q fever can happen - either through a tick bite or exposure to tick fecal matter - but along with cases of sexual transmission,  this is rare compared to other methods.

There Are Unknowns In Tickborne Disease Transmission Times

Note that in the above chart, some items are marked unknown. This is because - as far as could be determined, no lab animal model transmission studies for that specific organism have been completed.

Incubation research may have been conducted - and this can inform us how long it takes before animals show signs and symptoms of being infected - but it does not inform us how long a tick must be attached before an infection can occur.

For example, the chart above contains information on Borrelia miyamotoi as one causative agent of relapsing fever, but transmission time from a hard-bodied Ixodid tick is currently unknown.

Until recently, it was thought relapsing fever spirochetes only colonize soft-bodied ticks and persist in their salivary glands, where they can transmit infection to blood quickly. But does the same situation apply to all hard-bodied ticks Borrelia miyamotoi colonizes? Is it the organism, or the tick's physiology, or both which determines how quickly Borrelia miyamotoi can be transmitted on average?

Heartland Virus is another example where transmission time is unknown. Heartland Virus is so new, very little is known about it.

Transmission Time Varies Based On Pathogen And Tick Species

Some pathogens are transmitted from a tick to its host in a few minutes - not hours - and so the 24 hour guideline does not apply to them. Relapsing fever organisms and tickborne viruses often fall into this category.

Some pathogens are transmitted more rapidly from one tick than they are from another. In Europe, there is evidence Lyme disease spirochetes are transmitted to their host more rapidly due to Ixodes ricinus' physiology. So if you live in Europe or visit there and get bitten by Ixodes ricinus, if the tick was attached for under 24 hours you are more likely to contract Lyme disease than if you were bitten by an Ixodes tick in North America.

Note, too, that transmission times can be periodically revised based on new data - and if anything, the trend has been demonstrating infection transmission could take place in less time than originally determined.

Overview Of Risk Factors In Tickborne Disease Transmission

What your risk is for contracting particular tickborne infections can vary, depending on:

  • The geographic location you were in when you were bitten; 
  • The type of tick which has bitten you;
  • How recently the tick may have fed on another host;
  • How many infectious organisms it has in its salivary glands;
  • Whether or not the tick is carrying other pathogens;
  • How long the tick has been attached; 
  • How the tick has been removed.

Those are risk factors involving the tick. But there are also host factors as well. Different hosts - including humans - have different immune systems and responses to specific tickborne strains of pathogens, and this, too, can determine the outcome of how or even if an infection will occur.

The Bottom Line

So what does the 24 hour guideline mean? It means many tickborne infections are less likely to infect you if a tick has been removed within 24 hours, but it isn't an ironclad guarantee that you won't contract an infection.

The best thing to do, of course, is to prevent ticks from getting on you in the first place. Prevention is key. No ticks means no tick bites, and not having to worry about what kind of tick has bitten you and what disease it might be carrying.

Wear permethrin coated clothes and use DEET spray on exposed skin. Wear pants tucked into socks and long-sleeved shirts and stick to the middle of the trail when hiking.

The second best thing to do is to do a regular tick check outdoors with a friend and not wait until you come home. Brush off any loose ticks, and carefully remove ticks with tweezers or narrow forceps as soon as you find them. Clean the tick bite area and place antibiotic lotion on it, then save the tick(s) you find in a well-sealed container for identification and testing at a tick testing lab.

There is no 100% guarantee that even with early tick removal, you will avoid contracting a tickborne infection. But your odds of getting infected are greatly reduced the sooner you properly remove a tick.


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Lyme disease. Centers for Disease Control. Downloaded September 28, 2013.
Piesman J, Mather TN, Sinsky RJ, et al. Duration of tick attachment and Borrelia burgdorferi transmission. J Clin Microbiol. 1987;25:557–8.
Joseph Piesman, Andrias Hojgaard, Protective value of prophylactic antibiotic treatment of tick bite for Lyme disease prevention: An animal model, Ticks and Tick-borne Diseases, Volume 3, Issue 3, June 2012, Pages 193-196.
Kahl O, Janetzki-Mittmann C, Gray JS, Jonas R, Stein J, et al. Risk of infection with Borrelia burgdorferi sensu lato for a host in relation to the duration of nymphal Ixodes ricinus feeding and the method of tick removal. Zentralbl Bakteriol 1998; 287: 41–52.
Leuba-Garcia S, Kramer MD, Wallich R, Gern L. Characterization of Borrelia burgdorferi isolated from different organs of Ixodes ricinus ticks collected in nature. Zbl Bakt 1994; 280: 468–475.
Crippa M, Rais O, Gern L Investigations on the mode and dynamics of transmission and infectivity of Borrelia burgdorferi sensu stricto and Borrelia afzelii in Ixodes ricinus ticks. Vector Borne Zoonotic Dis 2002; 2: 3–9.
Hofhuis A, Herremans T, Notermans DW, Sprong H, Fonville M, et al.  A Prospective Study among Patients Presenting at the General Practitioner with a Tick Bite or Erythema Migrans in the Netherlands. PLoS ONE 2013; 8(5): e64361.
Franc Strle, Jeffrey A. Nelson, Eva Ruzic-Sabljic, Joze Cimperman, Vera Maraspin, Stanka Lotric-Furlan, Yu Cheng, Maria M. Picken, Gordon M. Trenholme, and Roger N. Picken. European Lyme Borreliosis: 231 Culture-Confirmed Cases Involving Patients with Erythema Migrans. Clin Infect Dis. 1996; 23 (1): 61-65.
Davis GE. The endemic relapsing fevers. In: Hull TG, editor. Diseases transmitted from animals to man. Springfield (IL): Charles C Thomas; 1955. pp. 552–565.
Dworkin MS, Schwan TG, Anderson DE, Jr, Borchardt SM. Tick-borne relapsing fever. Infect. Dis. Clin. North Am. 2008; 22:449–468, viii.
Wisconsin Ticks and Tick-borne Diseases, Department of Entomology, University of Wisconsin-Madison Downloaded September 28, 2013.
Kramer V L, Randolph M P, Hui L T, Irwin W E, Gutierrez A G, Vugia D J. Detection of the agents of human ehrlichioses in ixodid ticks from California. Am J Trop Med Hyg. 1999; 60:62–65.
Piesman J., Hicks T. C., Sinsky R. J., Obiri G. Simultaneous transmission of Borrelia burgdorferi and Babesia microti by individual nymphal Ixodes dammini ticks. J. Clin. Microbiol. 1987; 25:2012–2013.
Piesman J., Spielman A. Human babesiosis on Nantucket Island: prevalence of Babesia microti in ticks. Am. J. Trop. Med. Hyg. 1980; 29:742–746.
Colville, J. L., and D. L. Berryhill. Rocky Mountain Spotted Fever, Handbook of Zoonoses, Mosby, Saint Louis, 2007, Pages 150-154.
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Lindquist L, et al. Tick-borne encephalitis. Lancet. 2008; 371(9627):1861-71.

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Tuesday, May 28, 2013

9 Persistence and Politics In Chronic Lyme Disease Research

The story of the controversy over Lyme disease research and treatment guidelines seems so strange to me, I wouldn't have believed it if I hadn't gotten Lyme disease and ended up looking into it myself.

I really thought when I first got bitten by a tick, got a rash, and got sick that it was going to be easy: take 2-3 weeks of antibiotics, get better, and go back to work. I had no idea at the time that one tick bite was going to change my life forever, and lead me down the path to learning about some controversy I previously knew nothing about.

And as much as I've learned about the Lyme disease controversy in several years, I still don't understand it.

A recent set of articles published by The Poughkeepsie Journal about emails requested under the Freedom of Information (FOI) Act - emails exchanged between members of the Infectious Disease Society of America (IDSA), Centers for Disease Control (CDC), and others - inspired me to write, but these, too, do not help me make any more sense of the controversy.

A Primer On The Lyme Disease Controversy

Before I proceed, for the uninitiated, here's the controversy in Lyme disease in a nutshell:

Many patients and some doctors believe that three weeks of antibiotic treatment is not enough and some patients need longer term antibiotic treatment. They think the bacteria, Borrelia burgdorferi, which causes Lyme disease can survive the recommended amount of antibiotics advised in the IDSA's guidelines. The IDSA and other organizations think that the recommended amount of antibiotics is adequate in the vast majority of cases, and giving patients longer courses of antibiotics is generally regarded as a bad idea. They have stated that chronic Lyme disease* is most likely a post-Lyme syndrome which is autoimmune in nature. The IDSA Lyme disease panelists view these patients' doctors as acting irresponsibly and taking unfair advantage of people who are most likely sick with something other than Lyme disease. The doctors and their patients disagree vehemently with the IDSA panel's position. It has become very heated from there.

* It should be noted that the use of terms such as "chronic Lyme disease", "post-Lyme disease (syndrome)", and "post-treatment Lyme disease" are often used interchangeably and can cause confusion. "chronic Lyme disease" has been used in the past by American researchers to mean "chronic infection" and continues to be used by the NIAID in the US. In Europe, "chronic Lyme disease" is used to mean "late stage infection". In America today, "chronic Lyme disease" has been used by the Lyme disease patient community to mean a chronic infection with Lyme disease Borrelia bacteria - where the patient has received at least some antibiotic treatment yet continues to have symptoms. "Post-Lyme disease (syndrome)" has been used by the IDSA Lyme disease panel and its colleagues to denote a presumed autoimmune-like condition that patients can develop after having a bonafide case of Lyme disease. "Post-treatment Lyme disease" is used by some doctors and researchers as a form of "non-partisan" terminology that tries to side-step the infection/autoimmunty debate for causation. (Sorry for any confusion. I'm confused too sometimes.)

Now that you have the controversy in a nutshell, getting back to those articles on those emails requested under the FOI…

Journalist Publishes Lyme Disease Academic Physician Emails Released Under Freedom Of Information Act

Mary Beth Pfeiffer, journalist working for The Poughkeepsie Journal wrote that Kris Newby placed the FOI request for the emails five years ago and only recently had her request fulfilled. Ms. Newby received copies of 3,000 individual emails under the FOI Act, of which several hundred were almost or entirely whited out, and shared them without condition with Ms. Pfeiffer for use in her articles.

In the two articles I'm discussing, "Interactive: Lyme, the ties that bind" and its companion article, "Chronic Lyme disease: Is it real?" - and one editorial letter in response to them by Dr. Phil Baker, Executive Officer of the American Lyme Disease Foundation (ALDF) - different sides of the debate are touched upon.

While Ms. Pfeiffer's position in her articles is that these FOI emails provide evidence of a possible unethical relationship between the Infectious Disease Society of America (IDSA) and their colleagues, the Centers for Disease Control (CDC), and the National Institute of Health (NIH), my focus here is not going to be on speculation about those relationships but instead are going to be about the need for clinical trials, how funding for Lyme disease is prioritized, patient relations, stagnation in science research, and questionable scientific conduct.

I'm going to be taking a few excerpts from Ms. Pfeiffer's articles, the FOI emails to which they refer, and Dr. Baker's editorial letter, and making comments about them.

But even more so? I'm going to be asking questions about them. Lots of questions - because to be frank, these emails and the content within them underscore the reasons why I don't want to get in the middle of the Lyme disease controversy and would much rather read about Borrelia spp. microbiology and immunology.

To me, learning about the science directly from research makes sense. The Lyme disease controversy? It doesn't make sense. And over a number paragraphs, I'll explain why - and tie these articles, emails, and Dr. Baker's letter in with information from other sources.

ILADS Should Conduct Clinical Trials Based On Clear Patient Criteria And Their Own Treatment Approaches - But Can They?

One notable passage from Dr. Phil Baker's editorial letter in response to Ms. Pfeiffer's articles got me to thinking:

"I stated that the ILADS guidelines were deficient in that they: (a) did not provide a precise definition of “chronic Lyme disease” as a clinical entity, so that it could be distinguished from other non-infectious medical conditions (e.g., chronic fatigue syndrome, fibromyalgia, etc.) with similar symptoms; (b) failed to provide unequivocal clinical evidence to indicate that patients suspected of having “chronic Lyme disease” actually have a persistent borrelial infection that justifies antibiotic therapy; and (c) failed to demonstrate, from the results of published, peer-reviewed, randomized, placebo-controlled trials, that extended antibiotic therapy is not only beneficial but also safe for the treatment of “chronic Lyme disease”.
While I do not like the same things other patients have complained about which Dr. Baker said within the FOI released emails - including his referring to patients as "Lyme loonies" (and I think he owes patients an apology for that) - I think it's important to examine this editorial comment because it is worth further discussion. And it lead to me ask the question, "Why doesn't ILADS conduct clinical trials?"

I asked, looking at the bigger picture and realized once I did, I could see where it would lead:

If you ask the vast majority of doctors and scientists who have no ties to the IDSA, they will tell you they, too, would be more comfortable using treatments which have been shown to be effective in clinical trials - and would likely refrain from making most treatment decisions without such evidence.

But beyond this, if ILADS conducted their own clinical trials based on patient criteria that they clearly define and treatment approaches they use in their own clinics, then once the evidence was provided which showed their effectiveness to others, many of the grievances patients have had about how chronic Lyme disease is handled would fade away:
  • Primary care physicians across the country could treat chronic Lyme disease using ILADS' methods because they would be assured the methods are effective.
  • Patients would not have to travel long distances to see a small number of doctors who specialize in treating chronic Lyme disease.
  • Patients could see a doctor who is in-network under their insurance plan and have the cost of office visits covered or mostly covered.
  • Insurance companies would stop denying coverage for specialized antibiotic treatments because they would have new data to rely on which supported new antibiotic regimens.
The situation as it currently stands is that patient advocacy organizations have petitioned individual states to pass laws which protect ILADS doctors (actually any doctor) from losing their license to practice solely because they administer long term antibiotics to patients with chronic Lyme disease. This legislation, which has been hard won by the efforts of many advocates and activists, hasn't changed the playing field in terms of increasing patient access to long term antibiotic treatment if that was one of the advocates' goals. In those states which pass such legislation, few new doctors prescribe antibiotics longer term.

This reality means mostly only ILADS doctors continue to practice long term antibiotic treatment for chronic Lyme disease, which encourages an ongoing wave of criticism from various medical organizations, pundits in the media, and those skeptical about the existence of chronic Lyme disease as a persisting bacterial infection.

The criticism is generally two-fold, and boils down to ILADS doctors taking unfair advantage of sick, vulnerable patients by operating concierge-style clinics where insurance is not accepted and concern about the growing problem of antibiotic resistance.

Those who defend against this criticism - advocacy groups and patients - say ILADS doctors have saved their lives or at least changed them for the better.

I would be one of them, too - my obvious EM rash went misdiagnosed as an allergic reaction to a tick bite and the doctor discarded the tick which had bitten me by tossing it in the trash without sending it to a lab. This when I had been bitten in a known endemic area by the state health department. The family physician I saw was practically useless, and I ended up at an ILADS doctor's office by referral after I had gotten so ill I could barely read and write, barely walk, and had trouble tracking conversations. (I'm better now, thankfully. Not normal - but better.)

It was never my plan to end up in an ILADS doctor's office, any more than it was the plan for one woman I had talked to on Twitter to end up getting her best Lyme disease medical advice from a PhD at her local university because her own local MD had failed her. (Something is wrong when I tally up the number of times I've heard stories similar to ours. Why are family doctors missing what would be considered textbook presentations of Lyme disease?)

This experience we share may be one reason Lyme disease advocacy groups and patients are not so proactive about pushing for clinical trials by the doctors who are helping them. If they've already had their diagnoses missed by family doctors who should be well informed about the symptoms and signs of early Lyme disease - and their infection went late stage - patients could have a lack of confidence in giving family and urgent care physicians the power to make medical decisions about chronic Lyme disease.

Patients when asked will tell you they see ILADS doctors because they are already doing their best to take care of them and help them get better when nobody else would. And they support them, saying some members of ILADS have treated chronic Lyme disease since before ILADS even existed and have many years of clinical experience working with patients with tickborne diseases - diseases which other doctors have been either unable, unknowledgable about, or unwilling to treat.

If ILADS seems to have a monopoly on treating chronic Lyme disease patients, how much of it is based on how poorly other doctors respond to patients with early cases of Lyme disease - such as my own case? How much of it is based on ILADS doctors developing a reputation for their treatment based on seeing patients who mostly have suffered from tickborne diseases - therefore having specialization in their practices? How much of it - critics have inquired - is because ILADS wants to hoard the care of such patients all to themselves in order to make a tidy profit?

One of ILADS' more vocal doctors, Dr. Daniel Cameron, indicated he isn't interested in ILADS having a monopoly in treating chronic Lyme disease. He made this remark on a Morning Call chat debate back in 2011 [12:38 mark], when he and Dr. Lawrence Zemel of the IDSA (a guidelines co-author) took questions from the audience:
"We need many more physicians to diagnose and treat chronic Lyme disease. We will have less chronic LD if they are recognized early. Finally, more physicians will offer more options for patient within HMO's."
Dr. Cameron's desire seems to closely reflect those of what many chronic Lyme disease patients would like to see: access to more doctors who know how to diagnose and treat their condition, earlier diagnosis, and access to treatment options within the HMO system.

This hardly sounds like a doctor who wants to monopolize the treatment of patients so he can make a buck. But those who spend any amount of time watching the Lyme wars scroll across their screen know that soon enough, someone will say he only made such a statement because politically it sounded good - not because he meant it with sincerity.

And this is one strong example of why, by the way, I've gotten tired of reading and talking about Lyme disease when it comes to its sociopolitical aspect: Everything anyone says, no matter which side of the Lyme disease treatment debate you are on isn't to be trusted. This is, after all, a Lyme war and there are whisper campaigns, there are rumors; there are truths and half-truths - and good luck sorting them all out along with who really said what from your armchair at home.

But I digress.

I think that if Dr. Cameron and his colleagues want to see more doctors diagnose and treat chronic Lyme disease the way he does, he is going to have to find a way to conduct clinical trials in order to provide HMOs with an incentive to change their approach on how they diagnose and treat chronic Lyme disease.

An important issue, of course, is whether or not Dr. Cameron and his colleagues at ILADS would be in any position to conduct the kind of clinical trials they would like to have based on their own treatments.

Over the years, I've heard a few Lyme disease researchers complain that certain kinds of Lyme disease projects get selected for grants, again and again, and few projects are novel and bring in new talent.

This issue was briefly touched upon by Ms. Pfeiffer in her articles as well:

Ms. Pfeiffer reported that one Lyme disease researcher said to her:
"How many studies have we got on coronary disease and cholesterol in the last 30 years? Thousands. We’ve got five with Lyme disease.” (Editor's note: The "five" refers to antibiotic treatment trials only - there is a lot of Lyme disease related research.)
The scientist did not “want to be identified with either side of the controversy,” and, like others, said it was difficult to obtain government research funding for scientists with alternate theories.

Dr. Stephen Barthold, a Lyme disease researcher from UC Davis stated at a House subcommittee hearing last July:
"Because of firmly entrenched opinion within the medical scientific community, evidence of persisting viable but non-cultivable spirochetes is slow to be accepted and research proposals submitted to NIH that feature persistence following treatment are likely to receive prejudicial peer review in the contentious environment of Lyme disease*. Negative comments by peer reviewers of grant applications in the current financially austere NIH climate result in unfundable scores, if they are scored at all (triaged). I have no personal stake in this issue any more, as I am retiring within a year. 
In my opinion, for such important and controversial studies to go forward, NIH will need to publish a specific call for applications, known as a “Request for Applications” (RFA), that requests research on the biological significance of persisting spirochetes following antibiotic treatment.
* a major weakness cited by a peer reviewer in a recent unfunded R01 application:
“The lay public that has so far denied the validity of scientific data will misunderstand the significance of…[persisting non-cultivable Borrelia burgdorferi]…and use it as additional evidence to support the idea of treatment-resistant Lyme disease.
My thoughts on that footnote on Dr. Barthold's submitted testimony is that if the lay public has a misunderstanding of the significance of persisting non-cultivable Borrelia burgdorferi and how it does or does not support the idea of treatment-resistant Lyme disease, then researchers and science journalists who report the significance of such findings need to improve how they communicate with the public about them.

Another goal I think they should have is to communicate the science clearly while also giving the patient community reasonable hope and evidence that projects are in the pipeline which will help them based on such findings.

Right now, neither seems to appear to be happening as often as it should - and further educational outreach and positive patient engagement is in order.

Separately, Dr. Baker has exchanged comments with me on the issue of more antibiotic treatment trials last February on, and informed me that the NIH-NIAID will most likely never do any long-term antibiotic treatment studies for chronic Lyme disease again:

"Since I have retired from the NIH, I don’t know what their plans are for future research on Lyme disease. But, I can tell you that about 90% of the research that NIH supports is driven by proposals submitted as investigator initiated grant applications — the RO1 grants. So, if anyone has any good ideas, they are always welcome to submit a grant application, although competition for grants is very keen and only about 25% of all applications submitted are funded. One has to be persistent as most of my colleagues are to make it in science. Although I am not opposed to conducting another clinical trial, the odds for such a proposal getting funded are rather slim, especially since NIH has already supported 4 trials indicating that extended antibiotic therapy is not beneficial. Obviously, I would like to see more work done on whether the “persistors” [sic] Bockenstedt and Barthold noted in mice are infective and can cause disease, as well as whether they can stimulate a local inflammatory response. But, I think we would be making a big mistake by not considering other possibilities as I’ve mentioned in a recent article."
He thought chronic Lyme disease studies should be conducted working from different perspectives (which I agree with in principle) but I have yet to witness any of such studies actually occurring which apply to treatment - nor are any listed on - and I check periodically.

Given that the NIH-NIAID is now suffering under the burden of sequestration, cuts have been made to research - including in areas which were already struggling for funding. I have a difficult time seeing how anyone doing research on Lyme disease is going to meet their projected goals for the future - whether their research is about long term antibiotic treatment or immunological factors involved in chronic Lyme/post treatment Lyme disease.

With this current state of affairs it's the patients who are going to suffer the most.

What Does The IDSA Lyme Disease Guidelines Panel Think Chronic Lyme Disease Is, Anyway?

Here are a few quotes from the IDSA Lyme disease guidelines panel members/colleagues' FOI emails from 2007 Ms. Pfeiffer published, stating they don't really know what chronic Lyme disease is:
"I believe that it (CLD) is primarily psychological (but there must be biochemical correlates) and I think it is a bit like post-traumatic stress disorder…One other post infectious syndrome that might be comparable is PANDAS." - Dr. Eugene Shapiro 
"The functional somatic syndromes is an excellent reference. I don't think I would mention PANDAS." - Dr. Henry Feder 
"I doubt very much that autoimmunity or molecular mimicry has anything to do with post-Lyme disease syndrome. It is most like chronic [fatigue syndrome]." - Dr. Allen Steere
None of them think chronic Lyme disease is caused by a persisting bacterial infection that survives 2-3 weeks of antibiotic treatment - at least not in these specific emails which Ms. Pfeiffer has made public.
But neither are they in agreement about what exactly chronic Lyme disease is, either. One additional statement which has been made publicly by IDSA Lyme disease guidelines members was the possibility that post-Lyme disease syndrome is an autoimmune-like disorder.

Six years have passed since the emails' authors shared their ideas of what chronic Lyme disease is or isn't. Has anything changed since then that we can find on record? For that matter - has anything changed since 1982?

Lyme disease's causative agent, Borrelia burgdorferi, was discovered in 1982 and it wasn't long after that that doctors began noticing patients didn't always get better after having one course of antibiotics. Or even two courses. Unlike other conditions which have been labeled by others as "being invented by the internet", the same cannot be said about chronic Lyme disease. Patients who continue to have symptoms after early or delayed antibiotic treatment have been around for a long time, and over 100 Lyme disease support groups were already in existence by 1992.

One major advocacy group had an electronic newsletter distributed from Lehigh University and no web sites; only 6,000 people knew this list existed - far fewer than the number of people who have heard of Lyme disease and chronic Lyme disease today. This was before Lyme disease cases greatly escalated in number (and by extension, more patients with persisting symptoms as well).

If Lyme disease has been easy to diagnose and treat, why did we have over 100 Lyme disease support groups back in 1992? Good question. And it's a good question to ask what has happened since then, and why there are even more support groups today, multiple advocacy organizations, protests, rallies, pushes for legislation, and controversial films like Under Our Skin being produced.

When I read a transcript of a Senate subcommittee hearing on Lyme disease held back in 1993 - that's twenty years ago - it's apparent the same sort of issues doctors, patients, and researchers had back then are the same ones they have today (Copies of original hearing transcripts with commentary here: part one and part two ).

And when I see Ms. Pfeiffer write about the amount of NIH grant money that has been going to the same small group of researchers over and over, year after year, and they happen to be the same people (or their colleagues) who make statements about what chronic Lyme disease is or isn't, I have to wonder why they didn't put more money towards researching this chronic condition years ago?

And if they did put some money towards it - why it has been so non-productive an enterprise from the patients' perspective?

Why are we still stuck?

One reason why I am invested in answering these questions is apparent and biased: I'm a patient. But the other reason I am invested is that I'm genuinely curious why there has been no obvious progress on my condition and the development of more treatment studies.

The entire scene seems particularly illogical when you realize the one point of agreement IDSA Lyme disease guidelines panelists' share with most doctors in practice now - including even ILADS doctors:
Lyme disease which is treated with antibiotics early leads to a positive outcome. In terms of helping people with this disease, those who get an erythema migrans rash (the bull's-eye) and flu-like illness are treated early and go on to feel better, return to work, and go back to school. They don't NEED any further help from a doctor. They're fine.
It seems to me the sticking point - and the issue which needs more attention - are those patients who are NOT fine, and do NOT go on to be fine. Shouldn't they be the ones who should be getting the lion's share of research, to try to understand why they are not doing well and their symptoms persist?

When it came to patients enrolled in the Klempner clinical trial (a long term antibiotic clinical trial for chronic Lyme disease patients conducted over 10 years ago), researchers said the condition could be equally disabling as congestive heart failure and osteoarthritis.

Knowing this, you would think the IDSA Lyme disease guidelines panelists would make it a priority to help such patients get better - or at the minimum, write guidelines which acknowledged the range of severity of their condition based on hard data and made actionable suggestions as to how to improve patients' quality of life. Instead, the 2006 guidelines state that the percentage of patients with this condition that suffer from pain is no higher than that found in the population at large and there is no suggested treatment advice.

When the Klempner trial was discontinued in 2001, Dr. Phil Baker said:
"The antibiotic treatment component is only one piece of NIAID's comprehensive clinical studies on chronic Lyme disease. These studies have yielded a considerable amount of new information. We intend to characterize the patients enrolled in the study as thoroughly as possible to learn more about the mechanisms involved in chronic Lyme disease," Dr. Baker adds. "The knowledge obtained from such studies should be of immense value in developing new, more promising approaches for treating this disease."
It's been twelve years since Dr. Baker made that statement. Twelve. Where are the "new, more promising approaches for treating this disease"?

Where Are The Immune-Mediated Treatment Studies For Patients Who Cannot Take More Antibiotics?

While some patients have given ILADS high accolades for saving their lives and changing them for the better due to longer term antibiotic treatment, other patients have not been as successful following the same plan. Those who support the outcomes of clinical trials done to date on long term antibiotic use for chronic Lyme disease would say hearing this is not surprising - though many patients would argue that the outcomes of those trials are not the full picture.

Regardless of whichever side of the debate you are on when it comes to long term antibiotic use, the truth is there are patients who either have not experienced much improvement on long term antibiotics or they could no longer take them due to side effects, allergies, or contracting C. difficile. These patients continue to experience symptoms of varying severity, and for them there must be other treatment options. So far, antimicrobial herbal tinctures are their first remedy to try, followed by increasingly ineffective and unproven treatments including amongst other things, Rife machines.

Is this the best that can be done for them? What about more evidence-based treatments?

If the IDSA Lyme disease guidelines panel and their colleagues think they have more evidence to support patients' persisting symptoms being caused by an autoimmune-like condition rather than a chronic infection, then where has their involvement and dedication been when it comes to the patient subgroup mentioned above?

Why hasn't the IDSA Lyme disease guidelines panel or their colleagues applied for grant money to do research on treatments which involve immune mediation or addressing autoimmune disease caused by Lyme disease?

The irony in Lyme disease research now is that a Lyme disease advocacy group - the kind of group which is typically reported about by many in the media as pushing for legislation to protect ILADS doctors and force insurers to cover long term antibiotics - has invested grant money in the development of the first novel immunological treatment for chronic Lyme disease, VGV-L.  VGV-L is a targeted peptide therapy developed by VG Life Sciences, Inc. which has already met pre-IND requirements of the FDA and is expected to enter clinical trial stage later this year.

The development of VGV-L has been funded by the Lyme Research Alliance, a patient advocacy group - and not Dr. Baker and his colleagues at the IDSA. And yet, VGV-L addresses immune dysregulation in Lyme disease - research he should be able to support as someone who does not think chronic Lyme disease is caused by ongoing infection.

Yet there has been not a peep, not a press release, not one scientific article or review from Dr. Baker and his colleagues at the ALDF or the IDSA about VGV-L and how based on the scientific understanding of chronic Lyme disease to date, it might or might not work.

And if Dr. Baker and his colleagues think that chronic Lyme disease is similar to fibromyalgia and chronic fatigue syndrome then why haven't they conducted clinical trials for chronic Lyme disease on low dose naltrexone - similar to the successful Stanford University studies using low dose naltrexone for fibromyalgia? Even now, some chronic Lyme disease patients are being prescribed low dose naltrexone off-label to help with managing pain - and some are reporting improvement.

There has been no positive engagement between the IDSA Lyme disease guidelines panel and Lyme disease patients for years - even with just this subgroup of chronic Lyme disease patients who either cannot handle additional antibiotic treatment or for whom there is evidence their symptoms may actually be more immune-mediated.

If I as a patient want to know more about post-treatment Lyme disease and how to treat it, and my doctor and I actually think my remaining symptoms are due to post-infection damage instead of persisting infection, there is no obvious resource for us to turn to.

There simply isn't enough research being done by anyone that addresses this condition. We are driving blind, and making it up as we go based on trial and error and models of other neuroimmune and neurological conditions, and by talking to other doctors and patients who are navigating the same issues.

Why ILADS And The IDSA Lyme Disease Guidelines Panel Can't - Or Won't - Meet In The Middle?

While I have wondered why the IDSA Lyme disease treatment panel dismisses the idea of persistent infection when it comes to Lyme disease - I've also wondered why a number of ILADS doctors and patients dismiss there being an element of immune dysregulation and autoimmune response where Lyme disease is concerned?

And it seems no one has considered the possibility except for a few researchers - or it's at least not discussed online much - that infection and immune dysregulation in Lyme disease could occur concurrently.

One possible combination treatment which could address both infection and immune regulation which could be used in clinical trials that both ILADS and the IDSA Lyme disease guidelines panel may want to consider is the use of IV ceftriaxone and filgrastim to treat Lyme disease patients who have persisting symptoms past initial treatment.

Dr. Isabel Diterich has used both filgrastim and ceftriaxone to treat a stubborn case of late stage Lyme disease, and the patient completely recovered and reported no relapsing symptoms in the following eight years. Additional studies were completed in animal models which showed some promise.

Such studies would involve a shorter total antibiotic treatment than any of the clinical trials for chronic Lyme disease conducted to date at the NIAID. Yet no one that I know of outside of Dr. Diterich and Dr. Albrecht Wendel has commented on this potential treatment - and neither ILADS nor the IDSA Lyme disease panel has mentioned it to my knowledge.

It's not as if getting more testing of this combination hasn't been tried before, either. Like those in the chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) community, with patients and doctors who lobbied hard to conduct clinical trials on rituximab for CFS/ME patients, Dr. Wendel tried to encourage Amgen to get involved in clinical trials to treat chronic Lyme disease patients using filgrastim alongside ceftriaxone. Amgen responded that they were not interested because the market for the drug was too small.

As time goes on, I wonder with each passing year that Lyme disease cases rise if this will continue to be the case. I don't know.

Both the IDSA Lyme disease guidelines panel and ILADS could have investigated this treatment approach, combining both antibiotics and immune mediation to see if it improved treatment outcomes for a higher percentage of patients. Instead, we're left with this ongoing debate between the ILADS promotion of long term antibiotic treatment because chronic Lyme disease is caused by infection versus the IDSA guidelines which have no advice for how to treat chronic Lyme/Post Lyme disease at all (and lots of verbiage on how NOT to treat it).

But even if this were a treatment trial which both ILADS and members of the IDSA Lyme disease guidelines panel could theoretically agree to, due to the history between members of both and contentious accusations shared in personal communications and in the media between advocacy organizations and anyone from the IDSA Lyme disease panel, this possibility looks slim. There is too much water under the bridge there.

The most recent accusation against members of the IDSA Lyme disease guidelines panel comes from ILADS member Dr. Ken Liegner, one of the most experienced Lyme disease specialists who has been dealing with the controversy pretty much since it began. Dr. Liegner spoke to a crowd of chronic Lyme disease patients at a rally in New York City recently, accusing Dr. Dattwyler of scientific misconduct and withholding scientific information that could prevent chronic disease and save lives:

"In the year 2000, due to fortuitous circumstances, and unbeknownst to Dr. Dattwyler, I gained access to CDC-funded experimental methods in his research laboratory for more than 140 specimens of frozen cerebrospinal fluid on my patients.

Whereas only 2% of specimens tested positive on standard spinal fluid tests, some 62 % of specimens tested positive on one or more of the four experimental assays used.  Ironically, Vicki Logan’s CSF tested more than 7 times higher than the positive cut-off for detection of Outer surface protein C antigen, in the very laboratory of Empire Blue Cross & Blue Shield’s own expert consultant. 
I asked Laboratory Supervisor, Priscilla Munoz, how they knew these methods were valid.  She replied that the three collaborating research laboratories shared aliquots of samples and found excellent reproducibility between the three labs.The results of these CDC-funded studies on direct detection of OspA and OspC antigen and IgG and IgM borrelia-specific immune complexes in spinal fluid have never been published. 
Why not? Did someone at CDC “deep six” the results of this research project?  If so, who made this decision, and why? 
I demand the “raw data” from these CDC-funded research studies, which have never seen the light of day, be made public immediately. 
Thomas Frieden, as Director of CDC can ‘set the tone’ for the agency.  I call on him, to ‘step up to the plate’ and fix the mess created by CDC.  Dr. Frieden can ‘redeem’ the reputation of  CDC, which is composed of fine physicians and scientists.  Dissociate CDC from the disgraced IDSA Lyme disease guidelines.  Otherwise, step down!"
In the Lyme wars, ILADS' critics would say Dr. Liegner is only making up stories in order to smear the reputations of those who challenge his livelihood as a Lyme doctor and stir up patients' ire toward activism.

On the other hand - if he's correct, this is a very serious accusation which cannot go ignored and his anger is understandable. I think even if I were a casual outside observer and not a patient, with an accusation of this nature a full investigation is in order.

Dr. Liegner's accusations are only one of many coming from ILADS and its advocates side towards those involved with the IDSA Lyme disease guidelines panel and the CDC. On both sides of the fence, accusations of conflicts of interest and scientific misconduct fly when it comes to the Lyme wars, with the most recent volley from the IDSA and its colleagues being a highly critical editorial against ILADS and patient advocacy groups which was published in The Lancet.

The Crazy Mixed-Up World Of Persisting Spirochetes

The IDSA Lyme disease guidelines panel and its colleagues at the American Lyme Disease Foundation (ALDF) state that chronic Lyme disease is not caused by persisting spirochetes - but like most patients, we have yet to hear the reason why they think persisting spirochetes are not causing patients' symptoms - at least in some subset of patients who are most likely to respond positively to additional antibiotics.

Dr. Phil Baker (mentioned earlier as the author of the editorial letter to Ms. Pfeiffer of The Poughkeepsie Journal in this post) is executive director of the ALDF, and has strong ties to the IDSA Lyme disease guidelines panel and also to the NIAID since he was a program officer for the Lyme disease research division there in the past.

While he doesn't support additional long-term antibiotic studies for chronic Lyme disease patients, he does support additional research on persister cells related to the research one member of the ALDF's scientific advisory board, Dr. Stephen Barthold, has been conducting. He also promotes similar research to that which was completed by Dr. Bockenstedt, who has stated in her own research published last year that spirochetal antigens may get trapped in patients' joints and that may be what causes their persisting symptoms.

What has Dr. Stephen Barthold said specifically about the nature of these persistent spirochetes in the past?

From an article published at the University of California at Davis in 2008, where Dr. Barthold does his work:
In the case of Lyme disease, the research findings do not suggest that continued use of antibiotics would succeed in getting rid of the lingering bacteria. 
"I suspect that if the initial round of antibiotics hasn't eliminated them, it's not likely that a longer regimen of antibiotics would be any more successful," Barthold said. "It's more likely that a completely different class of antibiotics would be needed to accomplish that. This laboratory mouse model will allow us to address those possibilities."
If Dr. Barthold's suspicion is correct, the reason why clinical trials using long term antibiotics to treat chronic Lyme disease haven't been entirely effective may be because the antibiotics which were used were inappropriate for treating the Borrelia burgdorferi infection patients had in the first place. They may have had some positive effect for some subset of patients - but clearly they did not improve all patients' symptoms.

In other words: Patients with chronic Lyme disease could have chronic infections, but treating them with the kind of antibiotics we have now won't help much. (They might, however, help some patients who have unidentified confections.)

Dr. Barthold has confused many patients with another hypothesis: It isn't infection with the spirochetes which is the primary problem, given their low numbers - rather that it's their ongoing presence which causes patients' persisting symptoms [11:21:11 mark].

Later on, in 2012, in his testimony at a federal House subcommittee hearing, Dr. Barthold stated:
"Because persistence of non-cultivable spirochetes has been shown to occur following treatment with several different classes of antibiotics, the phenomenon is likely explained by antimicrobial tolerance (in contrast to antibiotic resistance or inadequate antibiotic treatment), in which all classes of antibiotics fail to completely eliminate non-dividing or slowly-dividing subpopulations of a broad array of bacteria and fungi [44,45].

A possible explanation for these attenuated antibiotic-tolerant spirochetes may be because of plasmid loss, in which spirochetes have lost critical genetic material that favors robust growth. It has been known for decades that during in vitro passage, B. burgdorferi is highly prone to plasmid loss [46,47,48], and therefore plasmid loss is likely to also occur during the course of infection and increase over time. This may explain why treatment success in humans [3,8] and laboratory mice [2,38] appears to be most effective during early infection.

Treatment success is inversely correlated with spirochete populations, since spirochete burdens in mouse (and human) tissues are highest during early infection [49], when antibiotics work best. The biological (in contrast to medical) significance of attenuated spirochetes is probably insignificant, in that robustly dividing-, genetically-intact spirochetes would be selectively favored upon tick acquisition, transmission, and survival in reservoir hosts. The medical significance of attenuated persisting spirochetes is another matter, and compels further investigation."
For direct reference to the above citations, see full text here:

(As an aside, it is interesting to note that Dr. Isabel Diterich also published research in 2003 about antibiotic tolerance and immunosuppression involving Borrelia burgdorferi.)

Dr. Bockenstedt doesn't discuss lingering spirochetes in her most recent research which applies here - she discusses lingering antigens which might contribute to patients' persisting symptoms - rather than persister cells.

Dr. Barthold's and Dr. Monica Embers' research involving persistent spirochetes have intrigued the Lyme disease community, and it has called upon a world expert on persister cells, Dr. Kim Lewis, to help.

Dr. Lewis, Distinguished Professor and Director, Antimicrobial Discovery Center, Northeastern University, Boston, Massachusetts. Dr. Lewis, in collaboration with Brian Fallon, MD, MPH, Director of the Lyme and Tick-Borne Diseases Research Center at Columbia University, has recently been awarded a grant from the Lyme Research Alliance to do research which will focus on persisters and introduce a new, rapid method for determining antibiotic sensitivity. A particular variant of persisters will be studied to better understand chronic infection and several experimental compounds will be tested in an effort to eradicate persister populations.

Only further research can determine exactly what is happening with the pathology of chronic Lyme disease, but this research demonstrates that chronic Lyme disease is not easily dismissed with a vague diagnosis of something "a bit like post-traumatic stress disorder".

Something else is going on which is affecting patients and science help can determine what's behind patients' symptoms even if it takes longer to fully understand the process.

I applaud Dr. Barthold, Dr. Embers, Dr. Lewis, and Dr. Bockenstedt for further investigating the cause of chronic Lyme disease even amid dissent and scientific uncertainty. This is the only way to get real answers and stop the decades-long argument about who is right - and who is wrong.

End point?

What is the future of chronic Lyme disease (or post treatment Lyme disease, if that's your preferred term)? I don't know. My current hope is that research which is done with integrity by scientists who have no conflicts of interest and care about patients will be the focus of the next decade and not the kind of petty, low-minded handling my condition has received both in the media and behind the scenes.

If it is confirmed patients have an infection with persister cells, this will spur a whole new generation of treatment development to address persisters. If it is confirmed that retained antigens are a problem, then perhaps a different treatment will be designed for that. But as it stands, no one gets anywhere if we keep fighting. And it seems that patients, their families, and advocates have to hope that Lyme disease advocacy organizations can get together enough of the funding they need to offer grants for research to look into the problem rather than hope and pray that one of a handful of projects patients see as important gets funded by an NIH-NIAID under sequestration.

And people wonder why I want some more scotch...

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[Minor edit August 17, 2013 - Changed "fourteen years" to "twelve years" due to basic miscalculation error.]
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