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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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.]

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6 Health Matters Magazine And Lancet Anti-Science Lyme Disease Rebuttals

I wanted to point out two noteworthy online venues which are discussing Lyme disease as well as chronic Lyme disease - one article and a series of rebuttal letters which have been circulating around the Lyme disease patient community recently.

The first venue is Health Matters, an online magazine in the UK which is edited by Steve Iliffe, a professor at the University College of London, and Paul Walker,  an independent health consultant who worked for the NHS for many years.

This month, Health Matters published part one of an article by Kate Bloor on Lyme disease, "Falling Through The Gap?: Part One: Lyme Disease Prevention In The UK."

The article does not focus on the controversy around chronic Lyme disease but instead goes straight to the roots of Lyme disease by asking about which agencies and institutions in the UK are responsible for educating the public on prevention of tickborne illnesses and how well this job has been done to date.

Quoting Kate:

"Approaches that only target those in traditional high risk groups, may not reach far enough. New research shows that one in five people diagnosed with Lyme became infected either in an allotment, park or garden and one in five patients was infected abroad. These are not normally considered high risk areas or high risk activities."

Any program for prevention should be designed to reach all those groups who are found to be at risk and not some fraction of them, and should include prevention where substantial minority groups are at risk.

Kate also included this useful bit of statistical information:

"A survey of GP’s showed that 72% reported using the wrong method of tick removal, of the surveyed councils, only 7% provided information to staff, and only 7% claimed to have information for the public on their website."

From the research I've read from Russia, one of the major causes of infection from tick bites stems from improper removal of the tick. Every effort should be made to carefully remove the entire tick including the head and mandibles, without placing pressure on the tick's abdomen/gut. This will lessen the odds of contracting an infection greatly. Here, citing that 72% of doctors removed ticks incorrectly is very concerning; doctors are the front line for treatment and should be removing ticks properly nearly 100% of the time.

That regional councils would not have their own staff education and education for the public in place is also important to note, and I have to wonder how much those who have been bitten by ticks in these areas have informed the councils on their experience and requested more warnings to the public on tickborne illnesses. To me, it seems like it would require a small amount of effort and money invested in education to help prevent more people from being bitten.

The rest of the article outlines how prevention is being managed (or not) by various organizations, the educational strides being made by patient advocacy organizations such as Borreliosis and Associated Diseases Awareness UK (BADA-UK), and the need for national and local government health agencies to make tickborne illness a priority.

More here, at the link: http://www.healthmatters.org.uk/?p=1203

The second venue I want to mention is The Lancet, which has recently published a series of rebuttal letters in response to an opinion piece posted last year, "Antiscience and ethical concerns associated with advocacy of Lyme disease" (abstract only).

• Stella Huyshe-Shires, chairperson of Lyme Disease Action, writes about how the situation Auwaerter and his coauthors outline in the US is different from that which is experienced in the UK in regards to Lyme disease prevention, education, and treatment. She focuses on patient advocacy group's drive for awareness and evidence-based medicine to treat patients, and she mentions that the British Infection Association is now collaborating with LDA (UK) and a Department of Health funded body, the James Lind Alliance, on documentation of the uncertainties in treatment and diagnosis of Lyme disease.
  
  
• Christian Perronne, of the Infectious Diseases Department of the University of Versailles-St Quentin, France, points out the high variability and sensitivity of serological tests for Lyme disease, how tests do not account for strain varieties, and that other microbial infections may mimic that of Lyme disease. He points out that syndromes of an unknown cause should no longer be referred to as being chronic Lyme disease, and should be investigated for other microbial and non-microbial causes using an open-minded scientific approach.

• Carl Tuttle, of Hudson, New Hampshire, USA, wrote about how his experience of Lyme disease did not seem to match that of Auwaerter's experience, given how many people he knows have suffered serious symptoms with Lyme disease that was not diagnosed early - whereas Auwaerter indicated Lyme disease is easily diagnosed and treated. He mentions the inadequacy of serological testing and how it can lead to late stage cases which went undiagnosed and untreated, and how legislation has been passed in several states which protect doctors who treat Lyme disease patients with long-term antibiotics. He asks if the IDSA is correct in its position, then why is there so much legislation being passed which protects doctors who offer long-term antibiotic treatment?
  
  
• And lastly, Auwaerter et al offers a response to these rebuttals here:
  http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(12)70056-7/fulltext.
  
  Auwaerter et al state that a huge percentage of patients are being improperly diagnosed with chronic Lyme disease by alternative practitioners when these patients have another condition. They point out that serological testing is reliable, and evidence that testing is unreliable would be needed by Mr. Perronne and Mr. Tuttle in order to support their position. Auwaerter et al point out that the current guidelines stand based on independent scientific review and that "Vague symptoms such as chronic pain, fatigue, and neurocognitive complaints are poorly understood by modern medicine but are the focus of this debate." (Ed: The last full paragraph of this response is as long as the previous two put together and is comprised of nothing but a list of stated possible conflicts of interest.)

Comments:

While I agree with a lot of what Ms. Huyshe-Shires had to say, I would like to step away from the argument that "Lyme disease in ______ is different because it's different here".

I've heard this before, and this argument has been made to try to distance European patients from those in the US, with an underlying belief that since European strains are different, that diagnosis and treatment should be determined using European scientists and research - not that of American based IDSA. Fine, but then I will argue that since Europeans also contract Borrelia burgdorferi that they should come up with diagnostic and treatment methods for the US as well!

Scientific research to date has shown that Borreliosis is Borreliosis, whether it is caused by Borrelia burgdorferi, Borrelia afzelii, Borrelia garinii, and a number of other strains. The symptoms produced by these organisms may differ somewhat from one locale to the next, but many have the potential to cause neuroborreliosis, and indeed, even those with a most conservative view of the Lyme disease controversy have stated that there has been too much emphasis on Europe having more neuroborreliosis and different symptoms when the situation is that clinical presentations in the US have been very similar to those in the UK. 

Receiving an early diagnosis and treatment matters regardless of where one is in the world and which strain they have.

I can relate to Mr. Perronne's position, to some degree. I don't think this is a heterogeneous condition - nor was it from the start even if just basing it on those who have had tick bites - since a number of ticks are coinfected with pathogens other than Borrelia burgdorferi/afzelii/garinii. I think it's possible some patients have a different infection which they contracted through a tick bite or perhaps even a tick bite made them more susceptible to a new, undefined infection. More research is needed to determine why this group is heterogeneous, and to study those with a definite history of a tick bite and persisting symptoms very closely (regardless of serological test results) as their own separate group.

Mr. Tuttle's remarks reflect the fact that regardless of what side of the Lyme disease controversy you stand on, people are suffering a lot and heated debates on the state level end up weighing in on the side of the patient. Access to extended treatment is winning - whether the IDSA approves or not.

Auwaerter et al's response, to me, is predictable and to be expected. It would be appreciated if one day they were to focus more on the content of Mr. Perronne's position and join him in it by finding a way to initiate research which directly helps patients who are suffering with persisting symptoms and to stop spending an inordinate amount of time focusing on whether or not certain doctors and patients promote pseudoscientific practices and beliefs. They've already made it quite clear to The Lancet and the public what their position is.

One has to face reality here: If some alternative to current treatment practices is discovered which is safe and effective, patients will use it. In the meantime, patients who are suffering greatly will try any of a number of drugs, antibiotics, herbs, and supplements which are available in order to get well regardless of the IDSA's position on their condition and its treatment.

Whether these attempts to relieve symptoms are scientifically backed or not is irrelevant to someone who is seeking relieve pain and is nearly (if not completely) on the verge of suicide with pain. It is this human element of suffering which Auwaerter et al do not seem to want to contend with and address in a compassionate way - nor in a clinical, scientific way by either engaging in research which directly resolves the controversy or by finding the treatment of all treatments based on their own hypothesis of what causes persisting symptoms.

Patients with persisting post treatment Lyme disease symptoms have often tried mainstream approaches to treating their conditions when they were diagnosed with something other than chronic Lyme disease - only to either experience no improvement or even experience a significant worsening of their condition. The use of steroid-based drugs used for treating rheumatic conditions has been one such example of where patients with chronic Lyme disease have tried them based on an apparent diagnosis of a rheumatic condition - only to get sicker and become more symptomatic. Why is that? Someone needs to research this, too.

At some point I need to write a detailed scientifically cited response to Auwaerter et al's original letter to the Lancet instead of the rant I wrote in response to the abstract alone last year. At the time, I was too personally offended that I and my condition were equated with pseudoscience and my offense led to ranting rather than a rational, objective calling out of each point in the full text with a substantiated counterpoint of my own. 

It's difficult to be without bias. As a person suffering with the fallout from Lyme disease and Babesiosis, I cannot be completely without bias no matter how hard I try. But I can try to read the scientific arguments and research that different parties put forward and weigh them independently of how rotten I feel. It is possible, even if at times difficult. 

In the end, I genuinely want someone to just figure out what has brought me to the level of suffering I've experienced over the past several years - even if in some of that figuring out the cause turns out to differ from that which I've suspected. Fine. Just find it, and find a treatment that gets me back to my old self. 

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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.

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21 Rant: Why Dealing With Lyme Disease Drives Me Crazy. (Part 2)

Note: The content that follows is part two of a personal rant and is atypical of most content as well as context covered by this blog.

This is part two of a two part rant. Part one can be found here: http://campother.blogspot.com/2012/01/rant-why-dealing-with-lyme-disease.html

To continue where I left off, and to share other reasons as to why dealing with Lyme Disease drives me crazy from a patient's perspective:

7) Because the organizations and institutions which have the most influence on treatment and research for my condition are engaged in a political battle of the wills where if "you ain't with us, you're against us". It's a position where being in the middle is difficult at best.

Most patients with persisting late stage untreated Lyme disease and those with post treatment Lyme disease have voted to stick with ILADs doctors and other non-ILADS LLMDs for treatment, and support the organizations and advocates which support ILADS and other LLMDs. They think that a chronic infection is the cause of patients' persisting symptoms.

Most chronic Lyme disease patients and advocates view the IDSA Lyme disease guidelines group as being highly restrictive in terms of treatment of their disease, and not only that - think that the IDSA Lyme disease guidelines group does not care about patients and only cares about profit. The IDSA guidelines group thinks that some autoimmune condition is the cause of patients' persisting symptoms.

One segment of the chronic Lyme disease patient population has grown a general distrust of scientific researchers and allopathic medicine in general. This growing group of patients voices its dissent against not only the IDSA - but any group which may be viewed as profiting off of those with chronic illness in some way: The FDA, pharmaceutical companies, government and non-government researchers with patent rights to their technology, grad and post doc microbiology students, and then some.

Watching all this go by and unfold,  the position I'm in is that because I am not interested in completely aligning myself with any one of these groups in this battle, that I have been viewed by some patients as not being loyal enough to the chronic Lyme cause and not loyal enough to supporting alternative medicine. And for some small portion of my readers,  I'm not loyal enough to the hypotheses about chronic Lyme disease which the IDSA espouses, either, because I have this seemingly odd idea that some people may need more than the standard amount of antibiotics set out in their guidelines.

Because of this, sometimes I have not been able to get the support and understanding I need as a patient from other patients going through the same thing - presumably because they view me as fence sitting and it makes them feel distinctly uncomfortable. Heck, last year I was even banned from participating on one Lyme patient support group - so I have a sign that at least to some people, I'm not welcome.

But I'm not here to make people feel uncomfortable. It's not what I want to do, though I acknowledge that some of what I write may bring up uncomfortable feelings. What I do want to do is figure out what the truth is in this area full of conflict and get a greater sense of it. Move past any ideological conflict and look at the science. This is why I do research and try to avoid what all the pundits are saying - whether they are pro or against something - whatever it is.

I think that what causes persisting symptoms in patients is not a one answer deal, after all the research I've read. It's not that simple. And I wish that all of those involved in the study and treatment of Lyme disease would come forward and say that, and admit that they do not know what the best treatment is for everyone.

We need a different starting point than where we've been gridlocked over the treatment for the past two generations of Lyme disease patients. Why can't more people consider that those with persisting symptoms may have them both due to persisting infection as well as changes to the immune system? Or that the cause may differ in different patients? Do more research into how different strains of Bb and genetic backgrounds (e.g. HLA-DRs) of patients influence outcomes?

Two of the most supportive and outspoken figures in the Lyme disease community see the need for middle ground as I do - Pam Weintraub and Dr. Brian Fallon. I think we need more middle ground to be covered if we're going to make any progress on understanding chronic Lyme disease and getting better treatment for it. More research is really the key. More fighting over cause is not.

8) Because parts of the mainstream media continue to sensationalize this taking of sides and fails to examine and share all the scientific evidence available (and areas where evidence is also lacking on either side) about my condition, it contributes to the growing problem of scientific illiteracy in this country. It also contributes to dismissive attitudes towards patients with my condition.

I don't know how to say it enough or loudly enough to be heard: The Chicago Tribune's article, "Chronic Lyme: A dubious diagnosis" is exactly the kind of journalism that fails to address the issue of chronic Lyme disease from a scientific perspective.

I spent a fair chunk of my time deconstructing the article and pointing out how it was about two doctors' disciplinary records and flawed alternative treatments for chronic Lyme disease - rather than about whether or not Lyme disease could actually be a chronic infection. That issue is never really discussed throughout the entire article when one would think that based on the title that would be exactly what it would have been about.

Whether one believes chronic Lyme disease/post Lyme disease syndrome is caused by a chronic infection or not should not affect the fact that patients are suffering from a condition which is not "all in their heads".  Articles like the above characterize doctors and patients in the worst light without getting the full picture or an accurate one, while simultaneously failing to examine, state, and challenge the range of research on the disease itself. Anyone reading that article would walk away not having learned more about Lyme disease in general - let alone any reason why some people may think it can be a persistent infection and other people think it cannot.

This article is not the only article or the first article to become a meal to feed the trolls. There have been others. And because so many of these sensationalist articles have been printed, they have made it more difficult for the public to take my condition seriously. A condition which - as you may recall - an academic researcher said that at its worst was equal in severity of symptoms and lack of functionality in patients with congestive heart failure.

9) Because having my condition has been life changing and entirely game changing for me. All the plans I had before I got ill have been completely trashed. Many opportunities I would have said "yes" to I ended up having to turn down. And as such, for a number of these plans and opportunities - there are no second chances.

This is the same story that many people could say about other conditions, I know: Car accidents leave people with injuries and disabilities that can affect them for the rest of their lives. Cancer and many chronic conditions can affect people for the rest of their lives, too. Someone with my condition shares this much in common with many other people. And we might improve; we might not. No one knows.

That said, I can not easily describe just how much I have lost to my condition and complications related to it. Lost income and the loss of my career and the ability to work, lost opportunities to travel and go hiking in the mountains, lost time spent with friends and family because of illness preventing me from participating in events, lost positive life changes such as buying my own home and filling it with the things I want... all of these things and more have happened to me and many other people.

But these are the big things. Sometimes even the small things can be a noticeable and painful loss. Not being able to wash my own back put me at an all time low when it happened.

10) Because just living with my condition and all the symptoms it causes is crazymaking, and few people really understand it.  They don't "get it". Seeing someone with a broken leg makes it clear to someone else that something is wrong and what their limitations are - seeing someone like me makes it clear as mud what is wrong and what my limitations are. And things change from day to day.

This is a more difficult thing to explain, and perhaps some of it can be better articulated by web sites about invisible illnesses. My own attempt at it is to say imagine that you have a splitting headache almost constantly, have trouble taking full breaths day and night, your muscles ache - and ache worse with any repetitive motion, even after a short period of time, and your joints ache all over your body. And no one can see the pain you are in. At most, they can see you are moving more slowly than they would be. But other than that - you appear normal to them.

And tomorrow, those symptoms might change. But still be limiting and make you dysfunctional in different ways.

This is a small snapshot of how life has been for me. Sometimes it's better, sometimes it's worse. But if it weren't for walking around with a cane or borrowing a scooter to get around, a lot of people may not see that anything is wrong with me. Someone with a broken leg has the benefit of an obvious visual sign they are messed up. I don't. And because of this, some people have either forgotten I'm not well when they next see me - or worse, don't believe I am unwell in the first place.

And if I am at home in bed? That's a truly invisible illness - out of sight, out of mind.

That is its own problem: lack of external confirmation and validation of my condition.

Another problem related to this is my not knowing what to expect from my body and to expect from myself from one day to the next - and sometimes one moment to the next.

I may be able drive to the doctor's office, the hardware store and grocery store and come back home and still have the strength and energy to do something else the same day. I may not, and have trouble getting out of bed at all. On those days - if I get back and forth to the bathroom - that's my travel for the day.

Attached to that is a host of problems around how difficult it is to make plans and keep them, and the economic, social, and other costs that come with poor follow-through.

I feel alienated about living in my own body. It doesn't cooperate with what I want and need to do. And at times, the pain, fatigue, and isolation are hard to bear. I hurt. I've lost sleep on many nights because pain kept me awake. I've had to struggle through that pain alone, and wished there was someone to keep me company through it - yet at the same time, did not want to subject anyone to my misery.

Sometimes I don't even want company - and the funny thing is, during those times I don't like my own company, either. I become a total ass. I find my own ruminations while ill to be counterproductive and leading down the path to a dark and deep sense of hopelessness, one where there is no point in making plans for the future because I'm likely not able to keep them anyway. Serious depression here.

And even when I reach a stretch of acceptance of my condition and its limitations (and there is acceptance, but it's part of an ongoing process where it is revisited and not a destination where I can park),  living with it is still so damn HARD...

When I am around other people, I feel like the ghost at the table. I am there, but mentally and physically not solid. I can affect things, but only indirectly and weakly compared to one's normal human form. I can hear people and engage in conversation with them, but from my own perspective it always seems as if there is a thick layer of atmosphere I have to communicate through where speaking requires extra force to push the words out of my mouth and listening is like trying to decipher the words of people talking underwater. All of this communication takes extra effort I never needed to make before I got sick. I never would have even imagined one could get sick in such a way that normal social interaction would be draining. This is what chronic fatigue and brain fog are like. I didn't know it until I got it.

This is hard on an extrovert, and over time I've had to become more and more introverted in order to cope and adapt to my condition. I "don't have any spoons" to be the energetic and engaging person I used to be. I don't have it in me. Only a few people close to me are lucky enough to see a glimmer of my former self for brief moments of time.

In a very real sense, my condition has robbed me of being me. Which is one of the highest insults I can imagine any condition causing to anyone. I've been forced to become someone I do not want to be because of my condition. How sucky is that? It's pretty sucky.

So this is the end of part 2 of why dealing with Lyme disease drives me crazy. Maybe there will be a part 3 sometime in the future - I don't know. For now, I'll leave it at this.

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5 Two New Hypotheses For Chronic Lyme Disease Symptoms?

There have been a few hypotheses as to why some people experience persisting symptoms after antibiotic treatment for Lyme disease.

The predominant hypothesis supported by most of the Lyme disease patient community is that a chronic and persisting infection is caused by spirochetes sequestered in immune privileged sites - possibly dormant at stages - and difficult to beat without long term high doses of antibiotics. The predominant hypothesis supported by the IDSA Lyme disease guidelines panel appears to be divided between one where patients with persisting symptoms have some condition completely unrelated to Lyme disease - or patients have an autoimmune disorder triggered by Lyme disease.

There have been other hypotheses as to the cause on the table by various parties which are mostly immune-related, such as immune dysregulation and Pam3Cys/OspA immunosuppression. But now there may be two new hypotheses to add to the stack which might apply to some patients with chronic Lyme disease.

(Note that I say "might" and "some" in the previous statement. I have no means for testing these hypotheses, but it is something interesting to speculate about and discuss.)

Hypothesis #1: Chronic Lyme disease could be a metabolic disorder.

In a paper published in December in The Quarterly Review of Biology, one researcher argues that multiple sclerosis (MS) is not an autoimmune disorder as many have thought. She proposes that MS is actually a metabolic disorder.

To quote from Medscape:

"Corthals believes that the primary cause of MS can be traced to transcription factors in cell nuclei that control the uptake, breakdown, and release of lipids (fats and similar compounds) throughout the body. Disruption of these proteins, known as peroxisome proliferator-activated receptors (PPARs), causes a toxic byproduct of "bad" cholesterol called oxidized LDL to form plaques on the affected tissue. The accumulation of plaque in turn triggers an immune response, which ultimately leads to scarring. This is essentially the same mechanism involved in atherosclerosis, in which PPAR failure causes plaque accumulation, immune response, and scarring in coronary arteries."

What if infection with Lyme disease (and possibly coinfections) leads to disruption of PPARs and ultimately, tissue damage? What if at least some portion of patients with chronic Lyme disease are suffering from a metabolic disorder instead of a chronic infection?

What can patients do to treat and prevent this? It appears diet does play some role in developing MS - people with a Vitamin D deficiency and a high fat, high carbohydrate diet were more likely to develop MS than those who did not have a deficiency and such a diet. MS patients have said that taking more Vitamin D and switching to a low fat, low carbohydrate healthy diet has helped with their symptoms.

Other risk factors for developing MS include specific genetic backgrounds, pathogens (infections), and major cellular trauma. The same kind of factors may be relevant for Lyme disease patients who develop chronic symptoms.

Read more for food for thought:

http://www.medicalnewstoday.com/releases/239651.php 

Angelique Corthals, "Multiple Sclerosis (MS) is not a disease of the immune system," The Quarterly Review of Biology 86:4 (December 2011)

Hypothesis #2: Chronic Lyme disease could be a neurological/neurosensory disorder.

Lymenet Europe has been a wealth of scientific information over the years, and recent postings are no exception.

Recently, a thread on sympathetic neural hyperalgesia edema syndrome was posted, mentioning that its symptoms overlap many of those found in Lyme disease. Conditions and symptoms which relate to this syndrome are pelvic pain, abdominal pain, interstitial cystitis, backache, headache, arthritis, fibromyalgia, and mastalgia. This disorder may also manifest as unexplained weight gain, urticaria, chronic fatigue, and vasomotor symptoms unresponsive to estrogen, and a pseudohypothyroid state, according to the research cited on this thread (DOI: 10.1002/ibd.21269).

The proposed treatment for this condition? Dexedrine. That's right, good old dextroamphetamine sulfate, which is an amphetamine used to treat ADHD in adults and children.

While patients receiving this treatment achieved marked improvement in pain and relief from symptoms, I would be concerned about the long term potential for addiction and for side effects in people with certain preexisting conditions. On the other hand, if it is a drug which helps people with their symptoms and improves their quality of life, I think it might be a good idea for doctors to consider trying it on a case by case basis after giving patients an education about its benefits and drawbacks. Patients need to make a decision after being fully informed about its risks in particular.

Caution would also be warranted for patients who wished to try it alongside other supplements, medications, and antibiotics, given that some antibiotics (such as macrolides), medications, and supplements can affect heart rhythms and blood pressure - doubling up on this effect by using Dexedrine as well could have a serious impact on one's health.

This is one reason why I want more research: to know how often chronic infection plays a role in persisting symptoms and how often other conditions may be responsible for these symptoms - either concurrently or alone. Also, I'd want more specific treatments which are either curative and/or supportive for chronic Lyme disease to be investigated through clinical trials. It would be good to know how different potentially curative and supportive treatments could be helpful and harmful to a large body of patients and not just rely on the anecdotes and case studies of only a few.

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

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2 Blog Post: A Letter To A Patient With Chronic Disease

This blog post from Dr. Rob Lambert got passed on to me by a friend.

Although the blog post is from 2010, the advice given of how to approach a doctor when you have a chronic illness is good advice any time.

And with over 250 comments, those who posted and exchanged comments with the good doctor had their own advice and concerns to share.

 I highly recommend checking out Dr. Rob's post in Musings Of A Distractible Mind blog:

A Letter To A Patient With Chronic Disease:
http://distractible.org/?p=3912

You also might want to check out Dr. Rob's new blog, too:

More Musings (Of A Distractible Mind):
http://more-distractible.org/

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

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