1 Part 1: Sexual Transmission Of Lyme Disease - Is There Evidence?

Male and female Ixodes ricinus ticks mating. 

A number of patients with Lyme disease have wondered if there is any other way to contract Lyme disease other than a tick bite. It's not an uncommon question to ask, given that not everyone remembers getting a tick bite, and nymphs are so small they can bite and infect someone without anyone ever knowing they were there.

Of all the questions which lead one to pause for a moment regarding the possible methods of transmission of Lyme disease, it has to be this one: Can Lyme disease be sexually transmitted between partners?

This is an interesting question, and the overwhelming majority of researchers and medical professionals out there have stated that no, Lyme disease cannot be sexually transmitted between people.

They will state other forms of transmission can occur outside of a tick bite: Borrelia burgdorferi, the bacteria which causes Lyme disease, could be transmitted between ticks while they are mating (sexual transmission of relapsing fever spirochetes also occurs between ticks). It could be transmitted between ticks during co-feeding on the same mammal. It could be passed from a mother to her child's placenta in utero during pregnancy, and in some cases, to the fetus itself. But they will state that thus far, there is no evidence that Lyme disease can be sexually transmitted between mammals including humans.

My Initial Thoughts On The Issue Of Sexual Transmission

I didn't care much about answering the sexual transmission question when I first contracted Lyme disease. Partly because I was so sick, sex was the last thing on my mind, and I wasn't up to having any. Yeah, sad but true. For the most part, I concerned myself with treatment, rest, and getting better.

Time and again, it's clear the question about whether or not Lyme disease can be sexually transmitted is important to others as it has been raised in support groups, on online patient fora, in chat rooms, and at conferences. So it's a question that keeps coming back, and now that a new abstract by Middelveen et al has been making the rounds concerning sexual transmission of Lyme disease, the topic has become the focus of discussion by the media and among patients yet again.

So I started investigating the issue of sexual transmission of Lyme disease, and while I came across a number of stories online where patients are convinced either they were infected by their spouse or had infected their spouse - actual studies regarding this phenomenon have been lacking. In reading of all the documentation on Lyme disease transmission I could get a hold of prior to writing this entry, I found one patient blog which offered a good layperson's summary of the literature regarding Lyme disease and sexual transmission: "Sexual Transmission of Lyme disease" on A Lyme Disease Journal by J. Mankoff.

Ms. Mankoff writes about the difficulty in finding scientific papers on Lyme disease sexual transmission studies using both animal and human models - and unfortunately, my own experience mirrored hers.

In doing the research for this post, I initially learned the following things about publications to date:

• Setting aside Middelveen et al's recent abstract for now, there has not been one published study which provides any evidence that live spirochetes can be passed on from one human to another through sexual intercourse or sexual contact.
• There is scant evidence that spirochetal DNA can be found in human seminal and vaginal secretions.
• There is limited evidence that spirochetal DNA can be found in human breast milk.
• There are animal studies which demonstrate uninfected animals placed in the same cages with infected animals can develop antibody responses to Borrelia burgdorferi.
• There are animal studies which demonstrate that animals infected with spirochetes do not pass them on to uninfected animals in the same cage.
• There are animal studies which indicate that the bladder and kidneys can be very good locations from which to culture spirochetes.
• There are animal studies which indicate spirochetal DNA can be high in urine samples.
• There are animal studies which indicate spirochetal DNA can be absent in urine samples.

When you look at this list, you'll notice that I went from discussing sexual transmission of Lyme disease to looking for spirochetes in sexual fluids and breast milk to looking for spirochetes in urine - probably not the direction anyone imagined I'd go. But that's because to date, more studies have been completed which indicate spirochetes are present in urine than studies which indicate spirochetes appear in sexual fluids - so I'm going to end up talking about those studies, too.

Evidence of Borrelia burgdorferi - Lyme disease DNA - in human semen and vaginal secretions

So far, while there is research which indicates Borrelia burgdorferi DNA has been found in samples of vaginal and seminal secretions, there is no research to date which has conclusively shown that live motile Borrelia burgdorferi spirochetes have been passed from one partner to another.

The distinction between having evidence of Borrelia burgdorferi DNA and having live motile Borrelia burgdorferi spirochetes is an important one: Having Borrelia burgdorferi DNA is like holding a strand of my hair in your hand - whereas having a live, motile Borrelia burgdorferi spirochete is like having me sitting in your living room drinking a beer. Hair DNA is a part of me, but it isn't all of me.

This distinction is important to remember when reviewing one of the most frequently cited papers online on the presence of Borrelia burgdorferi DNA in human vaginal and seminal secretions, "Recovery of Lyme Spirochetes by PCR in Semen Samples of Previously Diagnosed Lyme Disease Patients" presented by Dr. Gregory Bach at the 14th International Scientific Conference on Lyme Disease in April, 2001.

Unfortunately, when I reviewed all the major online repositories (Google Scholar, PubMed, Oxford Journals, etc.), this paper and its abstract was not listed anywhere and a general search outside of repositories did not point to any peer-reviewed sources. I eventually tracked down a copy of the abstract on Jenna's Lyme Blog, and am reproducing it here (with minor typo corrections) to make a few comments on it:

Recovery of Lyme Spirochetes By PCR In Semen Samples of Previously Diagnosed Lyme Disease Patients (2001)

Lyme disease, being a spirochete with pathology similar to syphilis, is often found difficult to treat due to the spirochete invading sanctuary sites and displaying pleomorphic characteristics such as a cyst (L-form). Because a significant portion of sexually active couples present to my office with Lyme disease, with only one partner having a history of tick exposure, the question of possible secondary (sexual) vector of transmission for the spirochete warrants inquiry.

Additionally, sexually active couples seem to have a marked propensity for antibiotic failure raising the question of sexually active couples re-infecting themselves through intimate contact.

METHODS:

Lyme spirochetes/DNA have been recovered from stored animal semen. Recovery of spirochete DNA from nursing mother’s breast milk and umbilical cord blood by PCR (confirmed by culture/microscopy), have been found in samples provided to my office.

RESULTS:

Surprisingly, initial laboratory testing of semen samples provided by male Lyme patients (positive by western blot/PCR in blood) and the male sexual partner of a Lyme infected female patient were positive approximately 40% of the time.

PCR recovery of Lyme DNA nucleotide sequences with microscopic confirmation of semen samples yielded positive results in 14/32 Lyme patients (13 male semen samples and 1 vaginal pap).

ALL positive semen/vaginal samples in patients with known sexual partners resulted in positive Lyme titers/PCR in their sexual partners. 3/4 positive semen patients had no or unknown sexual partners to be tested. These preliminary findings warrant further study. Currently a statistical design study to evaluate the possibility of sexual transmission of the spirochete is being undertaken.

Our laboratory studies confirm the existence of Lyme spirochetes in semen/vaginal secretions. Whether or not further clinical studies with a larger statistical group will support the hypothesis of sexual transmission remains to be seen. A retrospective clinical study is also underway.

We are reviewing the medical records, collecting semen samples of patients who were previously diagnosed with current and previously treated Lyme disease are being asked to provide semen, pap, and blood samples for extensive laboratory testing.

CONCLUSION:

With the initially impressive data, we feel the subsequent statistical study on the sexual transmission of the Lyme spirochete will illuminate a much broader spectrum of public health concerns associated with the disease than the originally accepted tick borne vector.

At first glance, someone reading this study may get excited: Hey, they found evidence of Lyme disease bacteria in semen and vaginal fluid. But on further reading, it becomes clear that the paper focuses on PCR recovery of Lyme DNA nucleotide sequences and the results of western blots - not whole spirochetes.

There are unanswered questions about this study based on the abstract: We don't know what kind of microscopic confirmation was conducted and why it was mostly conducted on semen. We don't know if patients had other possible routes of exposure to spirochetes. We don't know if the DNA sequences recovered matched between sexual partners. We don't know whether any of the patients who were sampled had recently taken antibiotics and if the spirochetal DNA that was detected was the result of their bodies trying to purge a massive die-off of spirochetes. What kind of treatment patients in the study had received so far is an unknown.

I would agree with one message in the conclusion - that additional studies on spirochetal DNA or spirochetes in sexual fluids could be informative and help confirm or deny these findings.

But finding Lyme disease Borrelia burgdorferi DNA alone in secretions is not evidence that spirochetes can be transmitted - it can be much like finding dead viral particles leaving the body of someone who recently had the flu.

And in the case of figuring out who gave a flu to who, if Jane gets the flu - she may or may not have passed on the flu to John in her office. John could have picked it up from someone else or from fomites on a doorknob. Without more data, there's no compelling evidence to suggest that his active infection traces back to Jane in particular.

The difference with a study on the sexual transmission of Lyme disease compared to transmission of the flu is that one has to demonstrate not only that the person contracted Lyme disease from a specific partner through sexual contact but one also has to provide evidence that the person did not somehow contract Lyme disease from a tick bite or by a different nonsexual mode of transmission.

To my knowledge, further clinical studies with a larger statistical group have not been conducted by Dr. Bach to support his hypothesis about Lyme disease and sexual transmission, and his 2001 study abstract leaves the reader with unanswered questions.

Here is another paper which examines Borrelia burgdorferi in human samples - but not semen or vaginal secretions:

Detection of Borrelia burgdorferi DNA by polymerase chain reaction in the urine and breast milk of patients with Lyme Borreliosis (1995)

Abstract

Current laboratory diagnosis of Lyme borreliosis relies on tests for the detection of antibodies to Borrelia burgdorferi with known limitations. By using a simple extraction procedure for urine samples, B. burgdorferi DNA was amplified by a nested PCR with primers that target the specific part of the flagellin gene. To control possible inhibition of the enzyme (polymerase), a special assay using the same primers was developed. We examined 403 urine samples from 185 patients with skin manifestations of Lyme borreliosis. Before treatment, B. burgdorferi DNA was detected in 88 of 97 patients with Lyme borreliosis. After treatment, all but seven patients became nonreactive. Six of these seven persons suffered from intermittent migratory arthralgias or myalgias, and one from acrodermatitis chronica atrophicans. Two of 49 control patients with various dermatologic disorders and none out of 22 presumably healthy persons were reactive in the PCR. In addition to urine, breast milk from two lactating women with erythema migrans was tested and also found reactive. Borrelia burgdorferi DNA can be detected with high sensitivity (91%) by a nested PCR in urine of patients with Lyme borreliosis. In addition, this test can be a reliable marker for the efficacy of treatment.

This study indicates that spirochetal DNA could be easily detected in urine using nested PCR, though today this is not a testing method for Lyme disease which is regularly used (and indeed there have been mixed reviews on how effective the use of urine is in testing for Lyme disease). While human breast milk was found to be reactive in PCR, it's important to note that no motile, whole spirochetes were recorded as being found.

While interesting, this paper does not provide evidence that Lyme disease is sexually transmitted. It only has the potential to raise - but not answer - questions about the viability of spirochetes in urine and breast milk. Additional studies would have to be completed to determine that live, whole spirochetes are present in urine and breast milk, and that transmission of spirochetes can occur via human breast milk and urine.

Others have cited a 1995 paper online as evidence pointing to Borrelia burgdorferi surviving in semen: "Viability of Borrelia burgdorferi in stored semen". That line of thinking is erroneous,  however, and to clear up the matter here:

This paper is not about Borrelia burgdorferi being found surviving in semen - it's about seeing if Borrelia burgdorferi which is manually added to semen from different animals (bull, ram, and dog) is a useful storage method. Storing Borrelia burgdorferi in semen samples is then compared to storing them in Barbour-Stoenner-Kelly (BSK) medium. Nothing in this study is relevant to providing evidence about Borrelia burgdorferi from an actual infection showing up in the host animal's semen. (And yes, I agree this is a weird experiment, and wonder what the authors were thinking when designing it - perhaps that semen's components may be nutritious for spirochetes and easier to use than BSK.)

These studies are the top three studies often cited by some to support the position that Lyme disease can be sexually transmitted between humans - however, the first two only provide some evidence that Borrelia burgdorferi DNA can be found in semen, vaginal fluid, and breast milk - while the third is only about using animal semen to store spirochetes for research purposes.

The EC Burgess Studies

One oft-cited researcher who investigated various routes of transmission of Borrelia burgdorferi in animal models was Dr. Elizabeth Burgess. Notes taken from a lecture by Tom Grier, microbiologist, at Lac Court Oreilles Convention Center said in reference to Dr. Burgess:

"Dr Elizabeth Burgess, DMV at Madison: her work has been overlooked for decades.

Her preliminary work showed that the Borrelia species of spirochete possessed some mechanism and ability to penetrate mucous membranes suggesting transmission in cattle could be through urine–to- mouth contact putting cattle at a risk, besides just ticks.

Dr Burgess’ work was harshly and unjustly criticized without investigation or inspection. A decade later we see that Borrelia is a champion at penetrating mammalian blood vessels and endothelial cells that line the blood vessels. How hard is it to imagine mucosa capillaries in cattle are exposed targets for Borrelia to penetrate on contact? Since the introduction of the veterinary Lyme vaccines, we hear little about entire herds of cattle and horses being infected."

And it's true - Dr. Burgess' work was criticized.  Some of this criticism was mentioned in an article on Lyme disease from 1989 which was published in the New York Times:

Dr. Elizabeth Burgess of the University of Wisconsin's School of Veterinary Medicine has suggested the possibility of direct spread through contaminated urine.

But other experts expressed deep skepticism about her proposal, saying further studies are needed. They also say the disease probably would not follow a seasonal pattern if the spirochete were transmitted in this way. 

''If this were true, then virtually every veterinarian and every farmer would have Lyme disease,'' said Dr. Willy Burgdorfer, scientist emeritus at the Public Health Service laboratory in Montana. Dr. Burgdorfer led the team that in 1981 isolated the spirochete, which was named for him.

That same article later goes on to discuss the possibility of ticks spreading Lyme disease via migratory birds, with Dr. Burgdorfer then saying that ''just because they can be carried on birds does not mean that ticks will spread to every corner of the country.''

Since this article's publication in 1989, numerous scientific studies have provided evidence that migratory birds spread infected ticks to various corners of the country as well as to neighboring Canada. Dr. Burgdorfer has presumably revised his view on the role of migratory birds in spreading Lyme disease given these studies.

But as of this writing, it is unknown if his criticism of Dr. Burgess remains the same. And to some degree, Dr. Burgdorfer's statement on record at the New York Times is interesting from a historical perspective because in 1989, he had co-authored a paper with Dr. Tom Schwan about the utility of culturing Lyme disease from mouse bladders and how spirochetes were not found in the urine of the mice they studied - but by 1998, he co-authored a paper about tickborne relapsing fever, citing a Linnemann et al paper from 1978 mentioning that Borrelia spirochetes could be found in the urine of human patients with acute relapsing fever.

One interesting note about Dr. Burgdorfer's paper co-authored with Dr. Schwan: He cited an earlier 1986 study by Bosler and Schultze, "The prevalence and significance of Borrelia burgdorferi in the urine of feral reservoir hosts" (mentioned in table in part two of this blog post) where 50% of the mice studied from Shelter Island had evidence of Borrelia burgdorferi in urine, but it was thought the reason that they were that highly spirochetemic was because 95% of the mice were also infected with Babesia.

With this knowledge, I wonder if at some point years after his interview with the NYT, if Dr. Burgdorfer sat down with Dr. Burgess and discussed her work over a cup of coffee while they were both working on the Journal of Spirochetal and Tick-borne Diseases for the now retired Lyme Disease Foundation, and what conclusions they shared regarding the presence of spirochetes in urine samples. Did they discuss the role of Babesia in the presence of greater spirochetemia and spirocheturia in mice?

But I digress...

What did Burgess study? Burgess was known for her work on two infections - primarily duck plague virus, caused by anatid herpesvirus 1 - and Borrelia burgdorferi infections in a wide range of animals from cats and dogs to livestock; from black bears to coyotes. She was first author on 20 papers and co-author on 16 additional papers that I could find. This was her career, her lifeblood, and a record of her work can be viewed on Google Scholar.

Her most notable works related to Borrelia burgdorferi transmission in animals are:

• 1986 Experimental inoculation of dogs with Borrelia burgdorferi 
• 1986 Experimental inoculation of Peromyscus spp. with Borrelia burgdorferi: evidence of contact transmission 
• 1987 Oral infection of Peromyscus maniculatus with Borrelia burgdorferi and subsequent transmission by Ixodes dammini
• 1988 Borrelia burgdorferi infection in Wisconsin horses and cows
• 1989 Experimental inoculation of mallard ducks (Anas platyrhynchos) with Borrelia burgdorferi
• 1992 Experimentally induced infection of cats with Borrelia burgdorferi

I tried to track down Dr. Burgess to ask her about her work, but this task was not successful; she appears to have retired and does not have an active online presence. However, I was able to acquire copies of the full text of her papers for my own review.

Dr. Burgess' studies suggest that contact transmission from infected animals to uninfected animals can and does occur, though not consistently - and that even if there is no evidence of spirochetes being transferred from infected animals to uninfected animals, that uninfected animals housed with infected animals develop a positive antibody response to Borrelia burgdorferi. Her research also indicates that spirochetes can be found in animal urine and it is suggested that oral contact with that urine could lead to infection.

Her findings - now as they were then - have been considered by some to be controversial. Other researchers have conducted similar experiments and their results conflicted with those of Burgess. Or  they had negative results after running similar experiments using different animal models - which indicates that perhaps the ability for an animal to either transmit Borrelia burgdorferi via oral/urine contact or contract it that way is entirely species dependent.

Coming up next:

We'll take a closer look at suspected cases of contact transmission between animals infected with Borrelia burgdorferi and uninfected animals, and how these cases may have led to the question of whether or not sexual transmission of Lyme disease between animals occurred in Part 2 of "Sexual Transmission Of Lyme Disease - Is There Evidence?"

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0 Admin Note: Pardon The Mess...But I'm Changing The Blog

You might have noticed that this blog has had its format changed a lot in the past 24 hours. Apologies to anyone who found it disorienting, but it was something that had to be done.

Initially my intent was to do one thing and one thing only:  make room for an upcoming post which contains a wide table that wouldn't fit in my 3 column format. So I began pushing the links and widgets from two separate columns into one column so I could have a wider area for posts. Then I realized that it took much longer for the page to load, and there was a big white space below the posts next to the giant list of links I was forced to make when moving them all into one column.

Suffice it to say, one thing lead to another and before I knew it, I was more than halfway through an overhaul of the site's layout.

So here we are... I'm not sure I'm done with it (though hopefully close to it) and if you're a regular reader of this blog, it might be useful for me to point out what these changes have been, how they might affect you, and my thoughts on any near-future changes:

The logo has taken a vacation.

It's nothing personal, it just needed a break (as I have as well) and was tired of holding up the top of the page. So I took it offline, where it has decided to go off to a spa in Bayern, lose some weight, and promised to introduce me to some new friends. (I'm not sure what to make of this, but at any rate, hopefully our new logo will come back, refreshed and resized.)

"Posts people are reading this week" list was removed.

The posts which were on that list were there mainly because people found them through a search engine or were already familiar with the blog and came back for a second look. Few people used them to read an older post, and more than half of my readers are regulars looking for new posts. Given this, I decided to retire this list.

The long list of blog post links which bordered the left side of the page have been moved.

They have not been deleted, they now live on their own page which is linked to on the toolbar at the top of this page: Popular Posts.

Interesting as they were, they began slowing down the loading of this page and their presence prompted me to install a third column to the layout in the first place - which I now realize was a dumb decision if I ever intend to put tables of data on my blog or perhaps might want to post a diagram, scientific illustration, web comics, or a video with large dimensions. (The table on this page about tickborne disease transmission times already looks better.)

Sometimes less is more. So right. Gone.

<<  The "view all posts" link is gone, along with its cool retro graphic. 

Sorry, it just had to go. I hadn't clicked on it in a while, but a few days ago I tried it and found out it didn't work. It didn't work on my laptop, it didn't work on phones... it didn't work on anything. I don't know if Blogger decided to no longer support this feature or if it just stopped working with my blog once it reached a certain number of posts. Either way, it isn't working so it's gone.

If you used it a lot (or even at all), I recommend that instead you either search for a blog on a given topic by using the handy search tool on the sidebar or scroll down and browse the archives to find a specific blog post.

The blog rolls for science blogs and Lyme disease patient blogs (relocated to the footer below) now display the 5 most recently updated blogs. 

I have had a hard time deciding what to do with displaying blog rolls - particularly patient blogs. Two of the blogs on my patient roll as of this writing are no longer writing about Lyme disease. They have moved on, which is great news - but I'm not sure whether to retain their blogs since they are either unlikely to be updated or will be off topic. My compromise for the time being was to set the blog roll widget to only display the top 5 most recently updated blogs and the rest remain behind a link, where if you want to see them, just click it and the rest of the blogs - outdated as they are - will display.

It may be that I end up removing some of the blogs from my rolls and replace them with others. I haven't decided yet, but I could use recommendations for good blogs by patients about science and chronic illness management in general to add to the rolls. I've been thinking broadening the category from "Lyme disease patient blogs" to something more general about chronic illness (but which is still focused more on Lyme disease and other tickborne infections). Nothing solid yet. Update: I added "chronic illness" to the blog roll title, and PhDisabled blog.

Future changes?

I don't plan on making major future changes after this any time soon, unless one counts refreshing the logo (or header and logo area, to be precise) as a major change. My basic aim lately is to simplify everything, though, so you can at least make some predictions what direction near-future changes in the design and layout of this blog will be.

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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.]

The written content of this work by Camp Other is licensed under a Creative Commons
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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.

This work by Camp Other is licensed under a Creative Commons
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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:

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	Pathogen	Tick Species	Location	Estimated Transmission Time Upon Attachment
Lyme disease Borreliosis	Borrelia burgdorferi sensu strictu	Ixodes scapularis, Ixodes pacificus	North America	36-48 hrs; 24 hours or more; potentially less
	Borrelia burgdorferi	Ixodes ricinus	Europe	Less than 24 hours
	Borrelia afzelii	Ixodes ricinus	Europe	Less than 24 hours
	Borrelia garinii	Ixodes ricinus	Europe	Less than 24 hours
Tickborne Relapsing Fever	Borrelia miyamotoi	Ixodes scapularis, Ixodes pacificus	North America	unknown
		Ixodes ricinus	Europe	unknown
	Borrelia turicatae	Ornithodoros turciata	North America	30 seconds with a total tick attachment time 15-90 minutes
	Borrelia hermsii	Ornithodoros hermsii	North America	30 seconds with a total tick attachment time 15-90 minutes
Human Monocytic Ehrlichiosis	Ehrlichia chaffeensis	Amblyomma americanum, Ixodes pacificus, possibly Dermacentor variabilis	North America	12 to 24 hours
Human Ewingii Ehrlichiosis	Ehrlichia ewingii	Amblyomma americanum	North America	suspected 12 to 24 hours
Anaplasmosis (formerly HGE)	Anaplasma phagocytophilum (formerly Ehrlichia phagocytophilum)	Ixodes scapularis, Ixodes pacificus, Dermacentor variabilis	North America	12 to 24 hours
Babesiosis	Babesia duncani	Ixodes pacificus	North America	24 to 36 hours
	Babesia divergens	Ixodes ricinus	Europe	24 to 36 hours
	Babesia microti	Ixodes scapularis	North America	24 to 36 hours
Rocky Mountain Spotted Fever	Rickettsia rickettsii	Dermacentor andersoni, Dermacentor variabilis	North America	4 to 6 hours
Q Fever	Coxiella burnetii	Dermacentor andersoni (rare*)	North America	unknown - suspected fast as highly infectious
		Ixodes ricinus, others  (rare*)	Europe	unknown - suspected fast as highly infectious
Powassan Virus or Powassan Encephalitis	Lineage 1 or 2 Flavivirus	Ixodes cookei, Ixodes scapularis	North America	~15 minutes
Heartland Virus	Group V Phlebovirus	Amblyomma americanum	North America	unknown
Tickborne Encephalitis (TBE)	Flaviviridae Flavivirus	Ixodes ricinus	Europe	Within 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.


References

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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.
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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.
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