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

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

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

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

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

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

But I digress...

On to eviscerating the Slate...

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

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

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

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

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

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

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

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

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

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

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

On to another part of the article...

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

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

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

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

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

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

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

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

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

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

To continue...

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

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

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

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

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

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

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

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

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

Onward and upward...

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

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

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

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

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

The Slate article continues...

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

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

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

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

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

To continue...

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

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

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

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

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

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

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

Here we go with the depression, again.

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

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

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

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

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

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

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

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

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

There's more...

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

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

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

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

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

And the last bit from the Slate:

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

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

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

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

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

So, anyway...

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

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

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

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

* True story.

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

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0 Mitt Romney, Lyme Disease, And The Media

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

But no, that didn't happen...

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

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

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

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

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

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

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

Not.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

One notable passage for me was this one:

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

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

In Slate magazine, Laura Helmuth reports this personal story:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 Image Credit: Peter Wolber

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3 Commentary: Critical Mass In The Media On Lyme Disease

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Fear of Taking It Too Far?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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0 The Wall Street Journal On The Increase Of Tickborne Diseases

Today, Laura Landro of the Wall Street Journal published an article in its Life & Culture section on "This Season's Ticking Time Bomb: Warm Weather Means Ticks Will Be Out Early; A 'Horrific' Season for Lyme and Other Diseases."

It sounds like a sensationalized piece from the title at first - but it's not. It's straightforward reporting on how this year the number of tickborne diseases will be on the rise due to earlier warm temperatures and how to protect your yourself and your family through interactive advice.

Laura's article outlines the typical topics around Lyme disease: symptoms, the difficulty of early diagnosis and treatment, the rising number of cases reported to the CDC over the past decade, and the steps one can take to prevent contracting Lyme disease.

There is also mention of a CDC study on the use of sprays to limit tick population and how a Connecticut scientist sets Japanese barberry on fire to remove it as a source of ticks' sheltering habitat.

For more information, check out Laura's article on the WSJ here:

http://online.wsj.com/article/SB10001424052702303404704577305630267988716.html?mod=WSJ_LifeStyle_Lifestyle_6

In addition to this article, Laura Landro also wrote a blog entry in the Health section, "Doctors Clash Over Best Treatments for Lyme Disease", which discusses the IDSA's treatment guidelines approach (short, and possibly not sweet) and ILADS treatment approach (in for the long haul) for patients with persisting symptoms.

In the blog, Paul Mead of the CDC, Leo J. Shea III of ILADS, and Kristin Schofield, founder of a central New York chapter of the Empire State Lyme Disease Association, are all interviewed.

Read and comment on her blog entry here, as I did:

http://blogs.wsj.com/health/2012/03/27/doctors-clash-over-best-treatments-for-lyme-disease/tab/comments/#comment-1553317

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6 Washington Post Article On Chronic Lyme Disease

The Washington Post has an article on chronic Lyme disease which is well written and touches upon not only how the disease can be insidious and slowly creep up on people with a wide range of symptoms - it also touches upon the science and the controversy around chronic Lyme disease. 

I consider an article such as this one to be a far better one than "Chronic Lyme: a dubious diagnosis" which was published in 2010 in the Chicago Tribune, because this one focuses on patients, their symptoms, and outcomes of their treatment in the face of information which contradicts their reality. 

These two paragraphs tidily sum up the sort of information chronic Lyme disease patients are faced with when they first receive their diagnosis and begin treatment:

"I began my research on the Web site of the National Institute of Allergy and Infectious Diseases, part of the National Institutes of Health. “Lyme disease can usually be successfully treated with 3 to 4 weeks of antibiotic therapy,” it stated. “After being treated for Lyme disease, some patients still report non-specific symptoms, including persistent pain, fatigue, impaired cognitive function . . . . These patients . . . may be diagnosed with post-Lyme disease syndrome. Studies have shown that more antibiotic therapy is not beneficial and the risks outweigh the benefits.” 

I was puzzled. Why did the NIH say long-term antibiotic therapy was not effective? Although it was only one case, my friend’s daughter had apparently been cured by it. And at this point, Pat had been taking a single antibiotic for about six weeks and was clearly getting better. After a week on the drug, the numbness in his hands started to recede. After a month, he stopped gagging while he drank. But he was still extremely sick, and it seemed clear that stopping the treatment would be a disaster."

This is, as they say, where the rubber meets the road.

Once you begin antibiotic treatment and your symptoms begin to improve, the decision to stop them earlier doesn't make sense. When your symptoms are so severe that you cannot function and other alternatives you have tried have not worked, what else are you doing to do?

I have stopped treatment during the course of my disease - only to find my symptoms returning within a few days after antibiotics were stopped. Even after the worst of my symptoms began to fade, I have also gone without treatment for months, where I hovered back and forth between a state of flu and arthritis to fibromyalgia and functional fatigue - never living, just vaguely existing - only to improve when I began antibiotics again.

Inbetween the antibiotics, I tried painkillers and sleeping pills. I tried trigger point release therapy, gentle massage, and acupuncture. Of these, acupuncture worked the best. But beginning antibiotics again often not only brought the pain down - it gave me some energy and focus back.

As one person without a control version of myself, I can't really tell you how my control version would have fared without antibiotic treatment. But it's not a thought I want to contemplate, because I do remember just how much more worse off I was when I first found myself ill with Lyme disease and how I declined without treatment:

I could not understand what I read even if I read it multiple times and could not follow conversations around me. I remember crawling on my hands and knees to the bathroom, and not being able to wash my own back. Raising my arms became impossible. They were too heavy to lift. And at one point, I would fall asleep sitting up against many pillows and try hard not to move even the slightest amount because even that would send severe pain jolting through my entire body. From my head down to my fingertips; from my neck down to my toes. Every.single.joint. Every.single.muscle.

With antibiotics, I went from nearly bedridden to being able to walk. At first to the front door. Then to the mailbox. It was slow going. Agonizing.

But eventually, I did manage to get out more and walk further, and have life become at least a little closer to something resembling normal. Not in every respect - but not the hell it was when I first contracted Lyme disease, either. And I still have some distance to travel before I am more or less back to my old self.

This is just one report from one person. It's anecdotal. It's not the result of a clinical trial or published in a peer-reviewed well-established journal - unless we consider Rita, TicksSuck, Joanne, Heidi, Claudia, and others who comment here to be peers and this blog to be the journal.

I wish I had evidence I could give everyone to tell people that they helped me. That I improved, and when I went off of them for extended periods of time, it was like turning the clock back. Progress could be undone.

But I don't have hard scientific evidence to hand you on this one. I can say, though, that I went from doing next to nothing and wanting to die from severe pain to beginning to think again, read and write again, and sleep through the night without stabbing pain waking me. That, for me, was evidence enough that more antibiotic treatment helped. That's why I continued when I did.

Anyway... quit hanging out around here and go check out the entire Washington Post article, "The doctor diagnosed chronic Lyme disease, but many experts say it doesn’t exist": http://www.washingtonpost.com/national/health-science/the-doctor-diagnosed-chronic-lyme-disease-but-many-experts-say-it-doesnt-exist/2012/02/06/gIQA4aMHtR_story.html

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0 A Win For Free Access To Publicly Funded Research

A couple weeks ago I posted about the Research Works Act, and how it would force the public to pay twice for research their hard earned tax dollars already funded.

Today, I'm glad to report that the Research Works Act was rejected. Representatives Issa and Maloney pledged not to move the legislation forward. Infojustice's web site posted about this turn of events, and scathing commentary has ensued concerning the pay wall that is Elsevier.

Read about it here: http://infojustice.org/archives/8477

Also, see this article in The Scientist: http://the-scientist.com/2012/02/28/elsevier-abandons-anti-open-access-bill/

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0 More On Lyme Disease In Australia On The Today Tonight Show

There's been increased interest from my readers in learning more about Lyme disease in Australia, so I decided I would offer an update on the situation for everyone including my northern hemisphere readers who are interested in new developments there.

Last week, the Australian television news show, Today Tonight, posted a segment on Lyme disease in Australia and how it has become a controversial issue as a number of Australians who have never left the country were bitten by ticks and developed symptoms very much like those of Lyme disease.

As far as it is known, the bacteria which causes Lyme disease has not been detected in ticks in Australia - unless the researchers mentioned in the previous episode of Today Tonight which was covered here have finally discovered it.  Without their official announcement, though, it has been the situation that cases of Lyme disease within the country which have been confirmed were attributed to infections acquired overseas. Any recent reports of Lyme disease contracted within Australia have become controversial.

This week, Today Tonight has posted another segment about a man, Robert Sotur, who became ill on the job after numerous tick bites and won a government workmans compensation case due to an infection with Lyme disease.

This is pretty notable because he received compensation for a disease that the Federal Government, the Australian Medical Association, and Australian State Governments all say doesn't exist in Australia.

View the video of the show and transcript here: http://au.news.yahoo.com/today-tonight/health/article/-/12972227/lyme-disease-compensation/

A lawyer, David Jones (yes, seriously, David Jones - wonder how much tiresome joking he gets about that name), who is working on behalf of over fifty patients who never left Australia yet have come down with Lyme disease-like symptoms in Australia made this statement to Today Tonight:

"There needs to be an acceptance that there are many people within our community that are having symptoms that are Lyme or Lyme-like, and Governments need to take these people seriously. They need to commission the research, and they need to determine whether or not this disease, or a disease like it, exists here in Australia.”

He's right. If one man has won a workmans compensation case within Australia for falling ill after tick bites, there will likely be others. More than fifty, judging from his caseload alone. But there will be far fewer cases if the research is done to find the causative agent of this disease and to treat people for it as soon as possible.

If it is a bacterial agent, then unlike Ross River Virus and other viral infections which are more well known throughout Australia - early treatment can prevent more serious symptoms and potential permanent damage, and in the worst case scenario - death, as in the case of Karl McManus.

Given the limited amount of recent surveillance and examination of ticks for an indigenous spirochete that could cause a condition similar to Lyme disease - if not the potential importation of Borrelia spirochetes from neighboring Asia - it is not clear what reality is. The last major study to discover if Australian ticks harbored a spirochete similar to one that causes Lyme disease was conducted over 15 years ago. The situation may be different now.

Australian support groups for patients with tickborne illnesses have not only reported being bitten by ticks and falling ill afterwards - some have also reported infestations of bird mites preceding the onset of their symptoms. If this is the case, there may be more than one pathogen and more than one vector responsible for an overlapping set of symptoms in patients. Careful and thorough research is needed to sort it out.

My advice to any Australians reading this is whether or not the controversy of the existence of Lyme disease in your country is resolved soon that you do what you can to protect yourself from tick bites. Learn how to properly remove a tick to minimize the risk of infection, find a place to send your ticks for analysis, and educate yourself about the spectrum of symptoms which are related to ALL tickborne diseases and not just Lyme disease.

Tularemia was discovered in Tasmania last year and there is evidence beyond a doubt of its presence. Lyme disease now appears to be a possibility. And then there are those mosquito-borne and tickborne conditions of which many Australians are already familiar with such as Ross River Virus, Barmah Forest Virus, Tick Typhus, and Tick Paralysis - none of which you want if you can avoid them.

See a doctor if you suspect you have contracted a tickborne infection - remember, it may or may not be Lyme disease and treatment will be different for coinfections. But do go as soon as possible in order to prevent serious and potentially long-lasting complications.

And last but not least:

Petition your government, CSIRO, and local universities to do more research on tickborne illnesses including Lyme disease. Make sure you have your own homegrown research teams that will investigate the possibility of Lyme-like illnesses from pathogens transmitted by both bird mites and ticks. Ask Australian scientists to pave their own path and to not feel obliged to model all their investigations and guidelines for treatment based on those found in the northern hemisphere until it is more certain what is happening. In the meantime, treatment will probably be empiric and based on history, symptoms, and test results.

Here is a helpful link with short videos on the prevention of tick bites and safe removal of ticks:

Rather than just "Slip, Slap, Slop", learn to "Cover, Check, Clasp"?: http://campother.blogspot.com/2011/06/video-tick-removal.html

Fine-nosed tweezers are your friends, and not flame throwers and lighters...

Links to Australian tick bite related posts on this site:

About the first Today Tonight show this year on Lyme disease:
http://campother.blogspot.com/2012/02/lyme-disease-in-australia-on-today.html

On the outbreak of Tularemia in Tasmania late last year:
http://campother.blogspot.com/2011/11/tickborne-disease-outbreak-hits.html

On the use of marsupial cathelicidin peptides to fight infection:
http://campother.blogspot.com/2011/11/two-notable-antibiotic-articles-long.html

On Australian research on the relationship between tick bites and red meat allergies:
http://campother.blogspot.com/2011/04/tick-bite-you-stick-to-eating-fish-and.html

On Google search trends, and how Australians rank in the search for information on Lyme disease using Google:
http://campother.blogspot.com/2011/07/google-trends-on-lyme-disease.html

Links to Australian resources on Lyme disease outside of this blog:

CSIRO Public Health Advice on Ticks:
http://www.publish.csiro.au/?act=view_file&file_id=NB04047.pdf

The Karl McManus Foundation:
http://karlmcmanus.org/

Lyme Disease Association of Australia:
http://www.lymedisease.org.au/

Lyme Green Australia blog:
http://lymegreenaustralia.blogspot.com/

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2 Lyme Disease In Australia On Today Tomorrow Show

Last night the Australian television news show, Today Tonight, aired a segment on Lyme disease in Australia. While the dramatic reporting in this segment is not to my taste, I took special note of the research starting at roughly the 6:28 mark [11 minute video below may not work on all mobile devices]:

Excerpt from the transcript:

Inside a laboratory at Newcastle University a dedicated team, including Professor Tim Roberts, is toiling away on a fresh independent study - a collaboration with Sydney University - to determine whether Lyme disease is carried by Australian ticks. 

Professor Roberts thinks that Lyme Disease is in Australia. Thousands of ticks are being collected, and already he disputes long held theories that Australian sufferers only contract the disease after visiting Europe or America. 

“What we say and conclude is there is an organism here which is very similar to those two infected organisms, the one in Europe and the one in America,” he said. 

Some believe it got to Australia from migratory birds that fly all the way from Siberia and nest on our beaches. Then there's another school of thought that it's actually an indigenous strain, and it's always been in our country.

Professor Roberts believes that many people carry Lyme disease and don't even know. “A whole lot of people could, certainly absolutely, in the group with chronic fatigue syndrome,” he said.

It should be noted, however, that not everyone agrees with Professor Roberts - here is one person who disagrees:

“The opinion is that there is no good evidence that Lyme disease is acquired in Australia at the moment,” Dr Jeremy McAnulty from New South Wales Health and Protection said. 

“The other important information is that ticks that carry Lyme disease overseas aren't present in Australia, so we don't seem to have the right ticks for Lyme disease in Australia,” he added.

So no matter where one is in the world, Lyme disease generates controversy.

I want to know more about what Professor Roberts has found regarding finding an organism similar to the Borrelia that is in the US and Europe. This video is short on details in this regard.

I've found some mention of previous attempts to find the causative agent of this Borreliosis-like illlness from research done over 15 years ago - but nothing definitive.

What was said back then could well apply today:

Dr Bernie Hudson, a microbiologist who runs a clinic for Lyme disease sufferers at Royal North Shore Hospital, said it was better to treat those with symptoms of the disease as if they had it, rather than waiting years to have its existence in Australia accepted by other scientists, he said. 

Westmead entomologist Dr Richard Russell said his group had been "painted as baddies" but he would like to see the Newcastle team "get some money to do a definitive study and find out if it does exist".

Over fifteen years ago... is this Newcastle team which is doing research now related to those who had done the research in the past?

In the meantime, I hope those patients who were interviewed get the help they need and get better.

The transcript for the above video can be found here: http://au.news.yahoo.com/today-tonight/health/article/-/12892469/mystery-disease-cover-up

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