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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10 Commentary On Chronic Lyme Disease and Skepticism

When I began writing this blog, I originally wrote it to give a point-by-point analysis of how one article in the Chicago Tribune, "Chronic Lyme: A dubious diagnosis", did not address the issue of whether or not Lyme disease could be a chronic and persistent infection after initial or delayed antibiotic treatment. I wrote the analysis using Carl Sagan's Baloney Detection Kit, because I thought it was a good framework for deconstruction of the article.

I thought this analysis would attract the attention of a number of skeptics, and from there, we'd engage in a lively discussion about how the article skirted the issue of whether or not chronic Lyme disease is possible and dive into the evidence for and against chronic Lyme disease being a persistent - if only subclinical - infection.

It never happened. 

Over a year later, and it still didn't happen.

And, to this day, only one person has ever left me a comment which directly challenged what I was writing about and judged the content of this blog - at least as far as the idea of persistent infection is involved.

That comment was this:

You error in giving any credit to the "chronic lyme disease" movement.

I recommend this paper in the current issue of The Lancet (Sep 2011;11:713-719) :

Antiscience and ethical concerns associated with advocacy of Lyme disease

Abstract: Advocacy for Lyme disease has become an increasingly important part of an antiscience movement that denies both the viral cause of AIDS and the benefits of vaccines and that supports unproven (sometimes dangerous) alternative medical treatments. Some activists portray Lyme disease, a geographically limited tick-borne infection, as a disease that is insidious, ubiquitous, difficult to diagnose, and almost incurable; they also propose that the disease causes mainly non-specific symptoms that can be treated only with long-term antibiotics and other unorthodox and unvalidated treatments. Similar to other antiscience groups, these advocates have created a pseudoscientific and alternative selection of practitioners, research, and publications and have coordinated public protests, accused opponents of both corruption and conspiracy, and spurred legislative efforts to subvert evidence-based medicine and peer-reviewed science. The relations and actions of some activists, medical practitioners, and commercial bodies involved in Lyme disease advocacy pose a threat to public health.

And pertinent to this blog, the authors conclude, in part:

"This situation is not likely to end anytime soon. As with other antiscience groups, many Lyme disease activists are well funded and often connected to influential political and media sources. Treatment of Lyme disease with long-term antibiotics is profitable for LLMDs and can be falsely reassuring to patients, who believe that they have a debilitating chronic infection and thus do not seek diagnosis and treatment for other disorders. There is no deficiency of either new patients or activists. The medical anthropologist Sharon Kaufman wrote that “Information technology has transformed the way trust and knowledge are produced”.67 Most people now find medical information on the internet, and the websites of LLMDs and activists are often viewed as legitimate and reliable sources of information, which they may not be."

         - LindaRosaRN


I responded to her, asked her a few questions, and she never responded in return. A drive by. 

She obviously wanted to be heard but did not want to engage. Her comment was on a post about the Huffington Post and Under Our Skin; it wasn't even related to the antiscience letter to which she referred.

And since then, it's been crickets all around when it comes to skeptics  - even though I get visits from Spirochetes Unwound (of Research Blogging), and other web sites which are science and skeptic-oriented on a number of levels.

It's almost as if someone gets to the front door of this site and decides it's not for them just because it mentions the words, "chronic Lyme disease".

I'm guessing the skeptical person who stumbles upon this page with that first glance thinks, "Oh, well, it's another one of those chronic Lyme activists. Why are they ignoring all the evidence that after antibiotic treatment, those with persisting symptoms develop an autoimmune disorder? I'm getting out of here. I'm not wasting my time on this..."

If they're thinking that, then perhaps an overhaul is in order for this blog because I'm not trying to ignore the evidence about autoimmunity or immune dysregulation related to persisting symptoms.

I'm trying to look at a number of different hypotheses - including chronic infection - because these topics are of interest to other patients and I think they all deserve discussion. And there are other hypotheses outside of chronic infection and autoimmunity which are being researched such as chronic Lyme disease as a metabolic disorder, and I give them exposure.

Because I enjoy science, I look at research and science news related to tickborne infections and their reservoir hosts in general, without any particular goal in mind other than to say, "Hey, look at this - isn't this weird/interesting/informative?" I want to inspire the curiosity of the world I have in others.

At first glance, this blog has been primarily written for other patients with persisting symptoms related to Lyme disease infection. But it has also been written to open the floor to anyone for discussion about different causes for persisting symptoms.

This includes skeptics. They are welcome to comment here and share their perspective, as long as they aren't rude and can state their position while providing supporting evidence.

After all - I have a history of being a skeptic myself, and at times don't just want the cheering section behind me saying they support me as a fellow patient. I also want someone to occasionally shake me out of my complacency if I've been stuck in it. I occasionally want someone to present me with a different point of view or new evidence if they have it so I can consider other lines of inquiry in trying to understand my condition.

I have to wonder sometimes if I need a colorful banner or animated message on the top left corner of the homepage which states, "I am a skeptic and a patient with persisting symptoms related to Lyme disease".

Or maybe I need a paragraph at the top of one of my sidebars in order to say more about who I am.

Something like this:

Side note to all scientists and skeptics, in case you missed it: 

This blog is written from the perspective of one person who has been in the unfortunate position of being a skeptic who is suffering from persisting symptoms after receiving an infected tick bite.  

I want answers to questions such as, "What on earth does someone in my position do?" and "What kind of pragmatic approach can I have to dealing with my illness when I am a skeptic and want evidence to support my position and the decisions I make?" and "What research is out there which supports one or another position as to the cause for my condition?"

This has to be done carefully, though, for the sake of my audience.

While I want skeptics to feel welcome here,  I don't want to scare other patients away who are dealing with the same struggles. And I want everyone to feel welcome here and not like they have to constantly defend their illness to others who may not only be skeptical - but who have the potential to engage in less than civil behavior online.

My concern here is not unwarranted. I have read skeptic sites for a number of years, and while I can read sites where issues concerning chronic Lyme disease are debated by infectious disease specialists, researchers, doctors, and patients - such as this BMJ series of Rapid Responses - I practically choke on some of the comments on this chronic Lyme disease post on Respectful Insolence blog, because some of the exchanges are insulting and do little to advance serious discussion about Lyme disease. (Some of them are thoughtful and intelligent, too, though, so I don't avoid reading the thread entirely just because there are insults.)

And I have to remind myself that any blog on the internet has the potential for ill-informed comments, regardless of the original content.

One response on the above linked blog betrays a certain basic ignorance about Lyme disease:

"Yikes, always knew Chronic Lyme disease was complete woo. It's called an anxiety disorder, get your meds. Even acute Lyme disease is looking to be a bit far fetched, now I am far from an expert but it seems a little bit out of a sci fi novel for a tick to harbor some strange virus, who proved this and what experimental data did they have? What were the experiments that prove that some tick borned virus is the cause of a human disease in the first place?"

What the... 

Acute Lyme disease looks far fetched and it must be sci fi that a tick harbors a strange virus?

Far from expert?

Indeed. 


And some comments are thoughtful and the response is respectfully delivered even if the content is something a number of patients would find disagreeable:

"...I don't doubt your story, but given how common tick bites are, it seems likely that an association could be found regardless of whether or not the tick bite actually caused the condition. Thus, anecdotes are not that useful in understanding the disease. Anecdotes don't tell us cause and effect. They show us why we should care, and they are important for that reason, but they do not tell us what is true. It takes a lot of carefully collected data to do that. 

How do you know the antibiotics are really responsible for your improved state of health? Remember, coincidences do happen -- during the summers I take Pulmicort, but is it really making my asthma better, or is the variable course of my asthma just being kind to me right now? I have anecdotes galore, but it's the clinical trial data that convinces me the Pulmicort really is working and it's not just my own desire for it to work making it seem as though it is.

Indeed, one day the truth may come out. But it'll have a hard time coming out when the science of Lyme disease is decided by politicians, and when those most invested in chronic Lyme disease would rather spend their effort treating patients than finding out whether or not they're actually doing the right thing for their patients. Too many of the positive studies I have seen have been enterprises in proving a point rather than testing an hypothesis; science can't be fair or unbiased or *truthful* if it does not entertain equally the possibility of being wrong."

They have a valid point. I can see that.

The problem is, when is this "one day where the truth may come out"?

I have to make decisions about what to do about my health TODAY.

That's the one truth which few of these exchanges seem to address:

How does one make an informed decision as to how to approach and treat one's condition when there is a medical controversy over how to treat it where one of the two options is not to treat it at all - and doing nothing leads to more suffering?

While the author takes the time to explain that anecdotes are not data (with which I agree) and that tick bites in and of themselves are common, there is plenty of medical research and documentation which provides evidence that a subset of infected Lyme disease patients go on to have persisting symptoms after initial treatment. For some of these patients, these symptoms are severe. For a number of them, symptoms persist not for months but for years.

The IDSA and other medical institutions and researchers acknowledge this condition. It's not well understood - but this phenomenon has been documented and is not the creation of a handful of woo charlatans looking to cash in on me.

And I am, for whatever unfortunate reason, the poor bastard who has this condition. And I:
- had a documented tick bite,
- developed an EM rash,
- received a positive blood test later on,
- developed all these symptoms which were clinically diagnosed as Lyme disease.

Unlike the claim made by Ms. Rosa above, no one has tried to con me into this diagnosis. I had a textbook case of Lyme disease. The evidence was there.

If anything, when I first contracted Lyme disease, I thought I was getting it taken care of early enough and would not have to touch the "Lyme controversy" with a twenty foot pole.

Unfortunately, life had other plans for me.

I ended up not being able to work, got sicker than I'd ever been in my life for months on end, then finally got better and off antibiotics and return to work... only to relapse, have to leave my job, and try to figure out what to do next.


Why me? I didn't ask for this. As someone who reads Free Inquiry on occasion, worked as a researcher, lived in a dorm full of physics and chemistry geeks, and thought Carl Sagan was one of the most brilliant and compassionate minds on Earth, I really did ask "Why me?".

But you know, the answer to a pathetic "Why me?" really is "Why not me?". No one asks for this. No one asks to be hit by a car, abused as a child, diagnosed with breast cancer, or to watch a parent die. We are all subject to things which happen beyond our control. It was just the random luck of the draw that someone who happened to be a skeptic would get a condition of which others are skeptical.

Ticks don't care if you like Sagan or vote for Romney. They just want lunch.

For better or worse, here I am. Now, how can I make the best of this? What can I make of this situation now that I'm smack in the middle of it?

I've thought that all I can do is write, research, and encourage others to do research. Learn and encourage others to learn more about tickborne illnesses. Encourage those who are out there who are working in microbiology and biology to engage in education and outreach which helps patients and sidesteps the politics. Educate one doctor at a time that someone with my condition exists, and that a tickborne infection can lead to chronic symptoms. Warn others and tell them to protect themselves when they go hiking and camping so they can avoid my fate.

Mainly what I want to do is get better and get back to living life as I was before - but this time, perhaps a little humbler, a little wiser, and with more compassion for others and more gratitude for myself.

In meantime, I keep hoping I'll meet others here who came from a similar background.

So far, in terms of scientists, I have had a few other Lyme disease patients with science degrees and research positions (or friends and partners of patients with science backgrounds) comment on this blog. Outside of these patients, researchers have commented less often and anonymously.

And I keep hoping someone who is a skeptic and also struggling with chronic Lyme disease or perhaps CFS/ME will come forward and we can review research together and try to make sense of it and figure out what the best course of action is. Even better? I keep hoping to see a microbiologist who researches Borrelia burgdorferi and has had persisting symptoms from Lyme disease take up blogging on their own and publish more insights of which are but a faint glimmer in my own head.

But so far? Crickets.

Surely we can do better than this. Surely one can light more candles against the darkness?

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2 Video: Jorge Benach On Tickborne Disease At Stony Brook

I came across this video on Youtube which I haven't seen mentioned elsewhere. It is a presentation by Dr. Jorge Benach on tickborne diseases, mostly focused on cases in New York State and much of it on Lyme disease - but there is also discussion on tickborne diseases in a more general sense as well.

I watched the video and made a note on topics of discussion during various points of time during the presentation which may be of interest to others.

Note that it is a little over an hour long, but you can skip the first three minutes as they are only an introduction. The last fifteen minutes are dedicated to a question and answer session with the audience - including one person who walked out because she was not satisfied with Dr. Benach's response.

[Time: 1:06:41]




11:39 Benach discusses Lone Star tick as primary tick on Long Island and that the number of cases of Lyme disease are going down in Eastern Long Island - possibly due to this tick's expansion.

16:33 Lifestyle of Ixodes tick described.

23:17 Early Babesia microti case on Long Island identified in 1970's - opens discussion on Babesiosis. Risk categories: over 50, elderly, asplenic, immunosuppressed, and/or alcoholism history.

29:00 Beginning of Lyme disease discussion... history of discovery, use of dark field microscopy for detection; electromicroscopy.

36:12 60% of patients have EM rash that is noticed. 40% do not.

37:00 Disseminated Lyme - Neuroborreliosis -20%, Cardiac disease- 5-10%, Arthritis - 60%

37:20 Secondary Disseminated symptoms - refractory to treatment - Benach does not understand what happens with chronic Lyme disease patients. Audience member brings up infection-related damage, Benach agrees with him that this is a problem - then goes back to discussing acute Lyme disease.

39:40 A rash that enlargens is clearly an EM rash. This is key to early diagnosis with a rash.

40:20 Multiple EM rash is sign of disseminated Lyme disease and requires IV or parenteral antibiotics.

40:57 Discusses spirochetes affecting the CNS and how it is similar to syphilis, and that a dementia-like form of Lyme disease is controversial. Audience member mentions person who was completely messed up by neurological Lyme disease; had CSF that was positive for Lyme disease and improved with IV treatment.

43:00 Benach thinks neurologic involvement in Lyme disease is underreported.

43:10 Explanation of Bells palsy in a child, says it is very common but not malignant.

43:57 Mentions Lyme arthritis in the classic sense. Discusses symptoms as relapsing and remitting.

44:38 Benach is under impression that most people's cases of Lyme disease are caught early and treated early due to presence of EM rash.

44:50 Epidemiology of Lyme disease in New York State and counties in NY. Benach thinks doctors in some counties are treating Lyme disease and are not reporting their cases to the state any more - they are "Lyme tired". For other counties, there is active surveillance, and the numbers are going up as more cases are new to their area.

47:00 Quip that LD now threatens politicians in Albany.

47:48 Is Lonestar tick driving other ticks away? Maybe… someone needs to study it.

48:13 Audience member asks about birds. Catbirds and robins have ticks, but don't carry a lot because they like the rims near eyes (bare skin). Birds are dead ends for the spirochetes because of their high temperature, according to Benach…

49:30 Start of Q & A session

51:38 Do people have natural immunity to Lyme disease? Benach does not think so - there is universal susceptibility to LD.

53:00 Jury still out on whether or not people have genetic susceptibility to Lyme disease. Hard to know if you are bitten multiple times if you have new instance of disease or preexisting disease because Lyme disease can last for 30 (possibly more) years in the human body.

54:40 No known existence of antibiotic resistant Lyme disease. Does he rule it out completely? No. But he states Borrelia are genetically challenged and have so few genes they need them to do housekeeping; they have a very small genome. He says there is no presence of those genes and he is 90% sure there is no antibiotic resistance.

57:09 Vaccine discussion - brief.

58:00 Pesticide soaked cotton balls used to fight ticks locally. (Damminix)

1:00 Opinion on prolonged chronic Lyme IV treatment: If  my child or I myself had a very strong titer for Lyme disease, I would use antibiotics for as long as it did good. If I did not have a very strong titer, then I would be reluctant to use antibiotics due to side effects.

Recurring arthritis and neurological manifestations come with strong serology according to Benach.

Benach leaves the audience with a confusing opinion: On one hand, he states he would not take antibiotics long term. On the other, he states that if he continued to be sick in the presence of strong serology then he would take antibiotics.

1:05 IgM doesn't drop over time in Lyme disease. We cannot culture Lyme disease easily, doesn't grow well in vitro - it is very slow growing. Only mycobacteria divides more slowly. You need 5 weeks to culture Borrelia. Benach's implication is no one would wait for those results - test is too difficult; takes too long.

More info. on Dr. Benach's research:
http://www.mgm.stonybrook.edu/benach/index.shtml


Comments:

One of my main comments for now (I may add more later) is that I think Dr. Benach is wrong about the birds.

I found this article: http://news.discovery.com/animals/migrating-birds-lower-body-temperature.html

Migrating birds can easily carry Borrelia spirochetes because their average daytime temperature is around 42.5C and goes down to 33C at night - the birds temporarily have hypothermia. They do this to save energy during long trips.

While some strains of Borrelia are sensitive to the birds' higher temperature range, some birds are actually conducive of supporting Borrelia spirochetal infections. Catharus fuscescens is one example.

See: http://jmm.sgmjournals.org/content/47/10/929.full.pdf

B. garinii, at 41C has the highest growth temperature on record. However, just because Borrelia stop growing doesn't indicate it is not present. Under varying temperature conditions, some Borrelia may be able to survive.

Another comment is that Dr. Benach mentions that Borrelia burgdorferi does not show signs of antibiotic resistance or genes for antibiotic resistance mechanism.

However, there are some spirochetes which have been resistant to erythromycin, and there is now some evidence of an antibiotic resistance mechanism in Bb: http://www.plospathogens.org/article/info%3Adoi%2F10.1371%2Fjournal.ppat.1000009

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5 Debate About Embers Non-Human Primate Chronic Lyme Disease Study Continues

UPDATE - Feb. 27:  I did receive a response from Dr. Baker. See comments below this post.

There is some heated discussion going on at CALDA's web site regarding Embers et al study, "Persistence of Borrelia burgdorferi in Rhesus Macaques following Antibiotic Treatment of Disseminated Infection (2012)".

I wrote about this study last month and commented on some of the findings and the need for further research and confirmation of the findings in this study. (I recommend reviewing that post and comments made on it.)

CALDA's Lorraine Johnson has questioned Dr. Phillip Baker, who was Program Officer for the NIH's Lyme disease research division at the time the Embers study began (then known as Mario Phillip's study; Baker retired from NIH in 2007 and is now in charge at the ALDF), over the 12 year delay of Embers et al publishing the results of this study.

Dr. Baker himself decided to respond to Lorraine's questions and respond to a number of the comments and questions patients and advocates shared on CALDA's Lyme Policy Wonk blog.

Interestingly, a number of people have discussed this study on Lymenet Europe - with one member, Henry, questioning the use of ceftiofur when Embers study was supposed to emulate Klempner's chronic Lyme study. This issue happens to be one of of main issues Dr. Baker also raises on the Wonk blog about the Embers study. (Warning: There are seven pages of spirited discussion on this topic at LNE thus far - some of which may raise blood pressure in readers.)

To follow the discussion and see an example of different points of view over the issue of chronic Lyme disease, read here: http://lymedisease.org/news/lymepolicywonk/lymepolicywonk-was-this-important-lyme-study-hidden-for-12-years.html

In the meantime, I have submitted my own questions and comments to CALDA's web site for Dr. Baker. As of this writing, my post has just cleared moderation and I await a response from Dr. Baker.

I want some answers. Not just about oversight for how the study was designed but about the lack of treatment studies for chronic Lyme disease patients.

Even if your position is that chronic Lyme disease is not caused by a persisting Borrelia infection, there is no reason why more research cannot be completed to provide evidence that this is or is not the case in some circumstances. And even if your position is that chronic Lyme disease's persisting symptoms may be caused by other factors, there is no reason why more treatment research cannot be completed to provide evidence either for or against these factors playing a role...

---

Dr. Baker,

First of all, I want to thank you for being here and presenting your view in the presence of Lyme disease patients who have different points of view than your own and who are at a minimum questioning your opinion about Lyme disease and at a maximum - quite angry.

This isn't an easy thing to do. I recognize that. But this is a necessary thing to do, and I wish that more dialog occurred between people with differing views even at the risk of it becoming contentious. It is often the only way opinions get aired and heard and questions get answered - even if we don't like the answers we hear.

I have a few questions for you, and hope I did not miss the boat on getting a response from you at this late hour:

1) Just so the storyline is clear: Who determined that ceftiofur should have been used in Embers et al study on NHP and is this decision something that NIH would have had to give approval - or is this a decision that would have been made at the individual level of the PI/researcher and not require any approval from the NIH? Would any independent governing scientific board outside the NIH been expected to approve of the study design including methods and materials? It seems that in order to emulate the Klempner study, the antibiotic chosen should either be the same as used in the original study or have, as you've stated, PK and PD that are pretty much indistinguishable from ceftriaxone.

2) In your opinion - and in the opinion of others at the ALDF - would you have to see studies separately completed on ceftiofur that provide you with evidence that its PK and PD in NHP are functionally equivalent to the use of ceftriaxone in humans? If these studies are conducted and they are found to be equivalent, then would you say that the results of the Embers et al study are valid? (Even if - according to your position - they don't yet prove a persistent infection/persister cells are the cause of patients' symptoms.)

3) The central point on which a lot of this debate hinges is whether or not spirochetes which remain after antibiotic treatment are viable and infectious. I've never gotten the impression that the majority of researchers out there have debated the existence of spirochetes after abx treatment - the impression I've had is that they either didn't think they were the cause of persisting symptoms in patients or did not know one way or the other if they were the case of persisting symptoms.

Parallel to demonstrated survival of some spirochetes after abx treatment, some research has indicated that a combination of Borrelial strain, host genetics, immune system response, and in some cases, molecular mimicry - may be causative factors for persisting symptoms. I myself think that based on evidence I've read to date, both persisting spirochetes and immune system changes can lead to persisting symptoms. I am particularly intrigued by HLA-DRs and variable immune response in this regard (see "HLA-DR alleles determine responsiveness to Borrelia burgdoferi antigens" by Bettina Panagiota Iliopoulou, Mireia Guerau-de-Arellano, and Brigitte T. Huber. Arthritis Rheum. 2009 December; 60(12): 3831–3840.).

My questions are:

When is the NIH-NIAID going to conduct more studies aimed towards this end? And also, if you and others are convinced that chronic Lyme disease patients are not suffering from persisting infections - why hasn't more treatment research been conducted that supports your point of view of what is or what are the causative factors for such symptoms?

Why are patients, advocates, and Lyme disease advocacy organizations having to donate money to Dr. Karen Newell Rogers and Viral Genetics to find alternative treatments to long-term antibiotics - why isn't the NIH-NIAID pursuing these alternative approaches now, if the argument is that long term antibiotics do not work and you consider them unsafe (Which in my opinion debatable in my eyes - I have personally benefited from more than the guidelines recommend - and I do not think the use for or against more abx is applicable to everyone because this is a heterogenous patient population. The patients need to be characterized into subgroups first rather than boxed into meeting CDC specific requirements before designing new trials.)?

I have been offended with the letter to the Lancet about Lyme disease patients and advocates supporting pseudoscience when so many of us have wanted to fund more research and get answers. When a number of our friends and families have donated their money to research even when they have already paid so much for treatment.

Some of the answers are already there. If more than one hypothesis is solid enough for testing, I'm for it. Test different combinations of antibiotics. Create drugs which have the anti-inflammatory properties of these antibiotics and use them as a control against combinations of antibiotics. Use higher doses of orals, if the fear of line sepsis freaks you out (it does me, and I have not had a PICC line by choice). Try testing thymus peptides and altering the distribution of B cells to see if that helps patients.

What I see as an observer is that Lyme disease treatment research has been shut down unless it's for acute Lyme disease. We need more late stage untreated Lyme disease research, and I'm with Fallon on this one - more specific neuroborreliosis research. His suggestions for those trials seem worthwhile.

But for God's sake, something has to be done. Some people are seriously impaired. I am doing somewhat better now and have my mind back to a large degree and don't need a wheelchair. But I am not yet well enough to work due to pain and fatigue with normal amounts of exertion. Something is broken there.

---

Dr. Baker's response to me:

Hi Campother,

Even though I feel that some have their minds made up and will not believe anything that I have to say, I will try to answer your questions:

1. Dr. Philipp received a small grant (AI042352) to conduct an experiment in NHPs to replicate the Klempner clinical trial, except of course for the manner in which the NHPs were infected. Because the grant was a small one (about $250K as I recall), Dr. Klempner was able — with support from the drug company– to provide him with the ceftriaxone and doxycycline to be used; these antibiotics were from the same lots used in the human study. Fair enough? That made working on a small grant a bit easier. 

Since NHPs are rather expensive to use and maintain, not too many could be used in the Philipp study because of limited funding. Furthermore, NHPs were in short supply at that time because of increase competition for use in studies on AIDS. The grant was funded for a 4 year period of time, during which time Dr. Philipp reported to me that he was having technical problems, especially with the strain of Borrelia that he had been using in past experiments; it appeared to have “lost its punch” and was no longer eliciting an infection of the same magnitude and character as noted in previous studies. This meant that he would have to re-drive the strain and test it in other NHPs to confirm that it was suitable for use in the definitive studies planned for the grant; that of course would take a great deal of time — and additional NHPs–to do. 

Although situations like this are unfortunate, they do happen and are part and parcel of the realities of doing scientific research — if you want to do it right. 

So, as far as Dr. Philipp’s original grant is concerned, it expired — after the 4 year period– with no data that he felt was was ready and complete for publication at that time. Obviously he continued with his NHP studies and apparently received funding from other sources; note that research Resources grants like RR00164 are designed for the purchase materials, equipment, and supplies, in this case, more NHPs I assume. But, I was “out of the picture” at that point — as far as Dr. Philipp’s research on NHPs was concerned. Keep in mind that as Program Officer, I was not the czar of NIH’s entire research program on Lyme disease, even though so people have the mistaken notion that I had such “power”.

So, you ask who made the decision to use ceftiofur instead of ceftriaxone? I honestly don’t know. 

You will have to ask Dr. Philipp, whose e-mail address is provided in the Embers paper. During the time that Dr. Philipp was doing his work under AI042352, it was being done in accordance with the terms of that grant indicated above. Whatever else he did — or may have done– must have been accomplished afterwards and with other support that did not involve me or NIAID. I must say that I find it strange that the term ceftriaxone is used throughout the Embers et al. paper, and it is only in the first paragraph on page 9 that it is first mentioned that ceftiofur was actually used. I find that very strange indeed.

As stated before and in other postings on this site, I have two major — and legitimate– concerns with the work reported by Embers et al. . First, since so little is known about the PK, PD, and MIC of ceftriofur, was the treatment adequate to eliminate the massive infection induced by needle inoculation? Since the author did not provide such assurances, that is a major and significant unknown. Second, if the therapy was adequate, there is no evidence to indicate that the “persistors” are able to infect other animals and produce disease. They might just be sitting there, for all we know, doing nothing harmful to the host. In view of these considerations, the PCR, RT-PCR, and xenodiagnosis data are not informative. In fact, there are no real differences between the antibiotic treated and sham-treated groups in terms of the objective signs of infection (pathology) noted ; that makes me wonder if the therapeutic regimen was truly effective. So, if I were reviewing this paper for publication in a journal, I would have to reject it publication for these and other deficiencies that I will not elaborate on at this time.

2. Since ceftiofur and cetriaxone differ significantly in chemical structure, I would not be at all surprised if they had different PD/PK properties; those who do drug design research find that the addition of a single chloride atom is enough to alter the properties of some drugs. What is certain is that ceftiofur is not approved for use in humans and there is no published evidence on its efficacy for treating borreliosis in animal models. Obviously, the use of ceftiofur is a big unknown. My best advice, if someone wanted to replicate the Klempner studies in an animal model would be to use ceftriaxone and doxycycline in the same manner that he did and not introduce another variable like ceftiofur– unless you plan to get the FDA to approve the use of ceftiofur in human studies. That may take a long time to do….

3. Since I have retired from the NIH, I don’t know what their plans are for future research on Lyme disease. But, I can tell you that about 90% of the research that NIH supports is driven by proposals submitted as investigator initiated grant applications — the RO1 grants. 

So, if anyone has any good ideas, they are always welcome to submit a grant application, although competition for grants is very keen and only about 25% of all applications submitted are funded. One has to be persistent as most of my colleagues are to make it in science. 

Although I am not opposed to conducting another clinical trial, the odds for such a proposal getting funded are rather slim, especially since NIH has already supported 4 trials indicating that extended antibiotic therapy is not beneficial. 

Obviously, I would like to see more work done on whether the “persistors” Bockenstedt and Barthold noted in mice are infective and can cause disease, as well as whether they can stimulate a local inflammatory response. But, I think we would be making a big mistake by not considering other possibilities as I’ve mentioned in a recent article (http://www.fasebj.org/content/26/1/11.long). 

There are MANY people who believe that they have “chronic Lyme disease” with no evidence that they ever had Lyme disease in the first place. Some have been misdiagnosed and are being subjected to all sort of unproven therapy. Also, there are individuals who go from one doctor to another seeking a “cure” and who often are victims of “quack” remedies. 

One reason we had so much difficulty enrolling patients into the Klempner study was that only about 5-8% of those who presented themselves for enrollment had unequivocal evidence in their medical record of having been diagnosed correctly for Lyme disease in the first place. Obviously, one can not have a chronic infection without first having an active and correctly diagnosed infection in the first place. That was made a criterion for enrollment to ensure that we would have a cohort of patients with a reasonably high — though still not absolutely certain– probability of having a persistent infection — if one were present. I assure you, and you can ask Brian Fallon and Lauren Krupp, such people are NOT easy to find.

But, I have said enough. The biggest obstacle to making any progress is the lack of trust and the tendency to condemn anyone in the scientific community who disagrees with the unproven concept of others. Some simply have no understanding of evidence-based research and how it works, let alone things like the placebo effect. There is just too much misinformation being spread on the internet — and too many people gobbling it up as though it were fact. It’s an ideal environment for all the “quacks” to thrive — and they surely do. And that is what disturbs me the most………

---

So, there you have it - that's his response, and while I posted a response to the Wonk blog, because my response was too lengthy it has not been posted there. So I posted it to comments below, after an explanation of why my response was not posted there.

The moderator emailed me personally and said that I could post another 150 word comment of my choosing, but I have declined for now because I don't think what I can say in response to Dr. Baker is adequately summed up in 150 words.

There was a second comment with other content which I submitted that I later decided needed a serious rewrite before posting - I won't be posting that here now and am okay with the moderators not publishing it (good job, mods - thanks).

I just want to take a moment here to acknowledge those who left intelligent and insightful questions and comments on the Wonk blog - even when addressing someone with whom they vehemently disagree. I would like to see more dialog such as this, but even more so I would like to see more thorough education and outreach going on which deconstructs all the hypotheses behind why chronic Lyme disease patients have persisting symptoms and what research is required to resolve the debate over cause.

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5 Doctors Who Decide Long Term Antibiotic Treatment May Be Warranted

This article by a doctor, Eating Crow With Lyme, has been making the rounds on several Lyme disease support lists and sites.

A lot of patients are feeling vindicated that longer term treatment with antibiotics is gaining more support when they see a doctor who used to hew tightly to the IDSA Lyme disease treatment guidelines has changed his mind.

What made the difference for the doctor in this article? To quote from the source:

"What changed my mind? Personal experience. A family member began to suffer a wide variety of strange symptoms 12 years ago, including facial numbness, slurred speech, problems with balance, abdominal pain, and headache. After a few baseline studies, her physician informed her that she was depressed and offered antidepressants. She told the physician she had read about Lyme disease and requested testing. He refused, stating (as I had to several of my patients) that her lack of history of tick bite and the classic rash disqualified her from any consideration of Lyme disease. But she worked and lived on a farm, had pets in the house, cut her own firewood, and spent much of her day outdoors. Deer (carriers of the primary Lyme disease vector, the blacklegged deer tick) were as plentiful as cows on the farm. The ingredients were all there...

She changed doctors and her new physician agreed to order an ELISA antibody screening study for Lyme disease. It was negative, she was reassured, and further workup was deferred. But the symptoms persisted, gradually worsening with time. She developed heart rhythm disturbances, migratory joint and muscle aches, and increasing weakness. The Lyme studies were repeated, this time including the Lyme Western Blot. Again, she failed to meet Centers for Disease Control criteria for Lyme disease. Multiple specialists, including neurologists, rheumatologists, and cardiologists, saw her; no one could figure out what was wrong. I kept thinking, “This seems to fit Lyme disease, but the tests are negative ... Hey, what do I know, these guys are specialists; I’d best keep my mouth shut.” Finally she was seen by a Lyme specialist. He initiated aggressive therapy for what he recognized clinically, and what was shown on repeat testing, to be a raging untreated case of Lyme disease. After years of misery and tens of thousands of dollars in medical costs, she is gradually getting better."

This is one doctor's story about one patient, but there are many similar stories that have been told online by other patients.

Based on this, one doctor changed his position on what Lyme disease was about, and now sounds supportive of longer term treatment - at least for someone with this specific background and case.

This is only one short article. I wonder how many other patients this doctor has seen and has wondered if they, too, have been struggling with Lyme disease.

I can't say that long-term antibiotic treatment is the right treatment for all patients in every situation; clearly some people can't tolerate them and their long-term effect on people is not entirely known. They are not risk-free, and they do not work equally well for everyone. At the same time, for patients in which they do work and it helps them get their life back, I have to wonder why there isn't more research being conducted on those who have already improved and reclaimed their former lives - and to compare them in some objectively measurable way against those patients who are acutely infected or have been suffering with long-term symptoms.

I keep thinking back on my own doctors who treated me for multiple ear and sinus infections with multiple courses of antibiotics, and how there was no external scrutiny from their peers or the insurance companies over whether or not my doctors could switch my antibiotics or give me more antibiotics in order to rid myself of such infections... There was no required blood test that I had to take in order to receive more and/or different antibiotic treatment. Objective evidence of infection wasn't necessary; I returned to the doctor and told them I still felt lousy, described my symptoms, and he or she gave me a new prescription.

Lyme disease is treated differently from a sinus infection. Differently from an ear infection. Differently from a urinary tract infection. Different from skin wound infections. All because for some reason, the idea is that Lyme disease has been properly treated after 2-3 weeks of the same antibiotic. In every case. For every person.

But is that correct? The word "guidelines" is supposed to mean precisely that. If an individual doctor determines a patient needs more treatment, then to provide more is at the doctor's discretion, based on an examination and the patient's response to treatment.

How does one support more treatment in one instance without providing any objective evidence, and deny it in another instance, while requiring objective evidence?

Is the goal for a physician to improve the quality of life for a patient, maintain their quality of life to prevent it from getting worse, or to cure a patient?

Is the goal of a physician - and the role of a physician - at odds with the goal of a clinical researcher and their own role?

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0 Blog Log: Retraction Watch

Readers might be interested in the blog, Retraction Watch (it's listed on my right sidebar, too, and not just in this entry).

Retraction Watch is a blog with two authors - namely Ivan Oransky, the executive editor for Reuters Health, and Adam Marcus, the managing editor for Anesthesiology News - who write about scientific papers which are fully or partially retracted from different journals.

Retraction - to those uninitiated into the ways of scientific publishing - means that the authors of the paper are either found to have faulty data and/or conclusions for their paper or report it themselves, and the paper is removed.

To give a more involved definition from Wikipedia:

"A retraction is a public statement, by the author of an earlier statement, that withdraws, cancels, refutes, diametrically reverses the original statement or ceases and desists from publishing the original statement. Retractions may or may not be accompanied by the author's further explanation as to how the original statement came to be made and/or what subsequent events, discoveries, or experiences led to the subsequent retraction. They are also in some cases accompanied by apologies for previous error and/or expressions of gratitude to persons who disclosed the error to the author."

So today's Retraction Watch entry, "So how often does medical consensus turn out to be wrong?", is of particular interest to those who question the utility and basis for medical and clinical treatment recommendations.

Here is an excerpt:

"In a quote that has become part of medical school orientations everywhere, David Sackett, often referred to as the “father of evidence-based medicine,” once famously said:

Half of what you’ll learn in medical school will be shown to be either dead wrong or out of date within five years of your graduation; the trouble is that nobody can tell you which half–so the most important thing to learn is how to learn on your own. 

Sackett, we are fairly sure, was making a wild estimate when he said ”half.” But a fascinating study out today in the Archives of Internal Medicine suggests that he may have been closer than any of us imagined."

With that, you know we're off to a good start...

Read more at Retraction Watch >>>

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0 BBC Article On Assessing Risk (Cellphones, Carcinogens, & Others)

This isn't about Lyme disease and tickborne infections, but it is definitely food for thought when considering the risk involved in any action you decide to take.

Check this article out:

Link: http://www.bbc.co.uk/news/magazine-13886254

Summary Teaser:

BBC News - Go Figure: Do we understand 'risk' of mobile phone use?

What should we make of recent news reports speculating about whether mobile phones cause cancer? It's all about how we deal with uncertainty, says Michael Blastland in his regular Go Figure column.

I highly recommend reading the highly rated comments from the "All Comments" pile, too. Insightful stuff, there.

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0 Q & A From Camp Other

Wherein Camp Other answers questions that are assumed one might ask, but haven't been directly posted...

Q: Why do you write about Lyme disease as something that might be a chronic, persistent infection at some times and not at others?

A: Because sometimes there might be a chronic, persistent infection in some people. There are case studies showing it does happen, with Vicki Logan being probably the most dramatic and well-known publicized case. This New York Times article from 1993 about Vicki even contains a footnote from Allen Steere, saying on rare occasion, Lyme disease can be chronic. Today, it's said Steere changed his mind - but when this happened and what the milestone moment was remains unclear to me. This is something many Lyme disease patients would like to know. But nonetheless, there are case studies that show people can have persistent infections - as well as animal studies.

Q: Do you think you have a chronic and persisting Lyme disease infection?

A: How many people really have persistent infections is unknown - and the problem is that there is no test in existence which can determine this. This is a source of much frustration for me.

If that sounds evasive, I don't intend it to be - all I know is that I have had a textbook case of Lyme disease and antibiotic treatment has helped with symptoms. And that's it.

Q: How did you know you had Lyme disease in the first place?

In my case, I knew right away. I was bitten by a tick during a hike and found it hours later. I went on to develop a raised red rash that kept expanding around the bite, and then developed symptoms of the worst flu I ever experienced. I had additional symptoms which were very intense. I had a positive Western Blot and a doctor treated me with antibiotics - however, they were not the first choice in antibiotics used for Lyme disease due to allergies. I also contracted Babesia, which was confirmed by testing. I was later told my initial symptoms were as severe as they were due to Babesia. From research I have read, this makes sense.

Q: How are you doing now?

Better. Not 100% well, but better. And I say this cautiously, as I've had stretches where I've felt better and stretches where I've felt like utter shit.

Q:  Why is it that patients with persisting symptoms of Lyme disease are sometimes given the diagnostic label of Chronic Lyme Disease and at other times, Post Lyme Disease Syndrome?

A: That question has been addressed elsewhere on this blog. Attempts to address it more eloquently may occur. As it stands, I have come up with a new term that I think both the IDSA, NIH, and Lyme disease patients could agree to, and that is Schrödinger's Lyme disease. Anyone versed in quantum mechanics should have an appreciation for my use of the term.

Q: Why do you persist in this issue of persistence when many scientists think there is an autoimmune disorder underlying those who have persisting symptoms since contracting Lyme disease?

A: Because I don't think that's the entire story. I think that some people have infections that last longer than others and are harder to treat - there's a gray area in medicine here. I also think there is a strong element of immune suppression and dysregulation before one gets to developing autoimmune disorders. I think autoimmune disorders can be triggered by Lyme disease - certainly this has happened with other infections. But what are the steps that happen before it gets to this point? We need to look deeply at this disease's pathogenesis.

Q: What do you think of long term antibiotic use for treating infection?

A: I think that some Lyme disease patients probably do need longer term treatment than others and in higher doses - there are different MIC's and MBC's listed in in vitro antibiotic susceptibility tests for Borrelia burgdorferi (Bb) and it's not standardized. More antibiotic research is needed - especially in determining the right treatment for late stage cases.

That said, I am concerned about the use of many years of long-term treatment with antibiotics, and this is one reason why I'd like to see scientific research end the controversy about whether or not Bb can persist; solve whether or not it has a dormant or low metabolic state in tissues and can return in increasing numbers.

As time goes on and bacteria becomes more resistant to antibiotics, regardless of their potential side effects, other methods will need to take their place if new antibiotics are not developed. I'm intrigued by the possibilities here and am always speculating about them.

I think scientists could learn something by monitoring and testing those patients who do go on long-term antibiotic regimens - it could be informative to see how this has an impact on their immune systems and bacterial flora, let alone any impact on targeted pathogens.

Q: What do you think of alternative medicine use for treating infection?

A: My priority has been researching Borrelia burgdorferi and Borrelia in general itself, and touching on topics in science and some in society that are directly related to that -  only occasionally do I venture into looking at alternative medicine when readers comment on it.

One thing I hope to do in the near future is explain in detail how Borrelia burgdorferi affects different parts of the body and the immune system, and also try to explain why some of the alternative therapies mentioned online are likely to work and/or not work based on what is known about Borrelia burgdorferi's interaction with its human host.

Some may say, "But doctor so-and-so already explained why this is good for the "cyst" form, " or "My herbalist said detoxing is necessary because of neurotoxins". And I hear that - yet at the same time I think, "Hey, what can I learn about this? I want to check this out for myself."

In saying checking it out, I don't mean immediately trying it. I mean I want evidence that either supports it... or doesn't.

Q: Do you have any comments on protocols like the Marshall protocol, Klinghardt's protocol,  etc? I haven't seen much mention of such protocols on this site so far.

A: I realize there are a lot of people who are interested in alternative medicine and understand why they are - at the same time, I'm not going to begin endorsing alternative treatments without researching them.

But if I happen to come across something in my reading that indicates an herb, supplement, or lifestyle change has a low risk profile, has been well studied, and could help lessen symptoms - I may write something about it and affix a list of disclaimers and caveats to it. I'd do the same for an antibiotic, too - all treatments are subject to this kind of write-up.

If I conduct my own experiment, I'll try to document it faithfully and diligently. But I'm not bound to do this often.

Q: What do you think are some of the biggest myths Lyme disease patients have heard about Lyme disease that you have confirmed for yourself as being myths so far?

After reading enough research, I think that the biggest myths so far are that everyone with similar symptoms must have undiagnosed Lyme disease, that Lyme disease bacteria produces an endotoxin (that would require LPS - Bb does not have LPS),  and that Lyme disease bacteria is indestructible (where did anyone get this idea?)... there are others, but I have to think more about them.

Some things which people seem certain about, I'm currently not so certain about - for example, I'm not so sure that a "cyst" form is relevant to Bb's survival, and I have yet to see confirmation that biofilms are an issue. I would look more at Bb's antigenic variation, segmented genes, and Bb's interaction with our immune system as a survival mechanism than these cyst forms and biofilms based on what I've read so far.

If anyone produces solid evidence that counters or supports these claims, I'll consider them. I'm open to hearing different viewpoints.

Q: What is one of your major concerns regarding other Lyme disease patients?

Depends on which patients you're talking about?

I think a lot of patients are level-headed and just trying to make sense of what's happened to them and don't know what to do next, and ask doctors and researchers questions to try to get a handle on their condition. Some do their own research as I do, and try not to invest too much in any one paper that comes along.

Science is an ever moving and ever changing understanding of our world, not something solidly fixed in stone - and one has to look at a whole body of publications to begin getting a snapshot of what is currently understood and not understood.

I am concerned that some patients will lose or have already lost credibility in the eyes of others because they talk about conspiracy theories a lot and try alternative treatments that not only sound like they aren't fun - but aren't safe, either. 

And I'm concerned that a number of patients misread and misunderstand science articles and papers, and pass on their misunderstanding to others as if these papers contain treatment ideas that are immediately applicable to their situation... This latest article posted just this week on scientists using sugar to combat persister cells in antibiotic resistant infections is just one example - as a result of misunderstanding it,  some patients are now deciding to eat more sugar with their antibiotics in hopes of killing Borrelia. 

This is not what this research suggests to me that one should do at all, based on a number of factors.  First of all, looking at the original abstract and supplemental file, the tests were done on E. coli and S. aureus and used aminoglycosides. Second, the concoctions were tested by injecting mice with them. Third, they were treating urinary tract infections, if I'm not mistaken. That's very different from Bb and oral antibiotics, and also different from Bb and IV antibiotics in humans. Fourth, never run with what preliminary research states until it is independently confirmed by another party or two with no conflicts of interest and solid credentials.

I could go on, but between those, the authors' own note of caution not to base too much on their own research, and my concern for those with diabetes and hypoglycemia for a start - adding extra sugar to your diet doesn't sound like a good idea.

Q: Do you have any off the wall speculations you've ever made about anything?

As an intellectual exercise - sure. Right now the one contender I'm thinking about is that underlying a lot of diseases may be an immune dysregulation component, and I'm wondering if anything in our environment has led to this dysregulation. Petroleum-based plastics? Industrial chemicals? I don't know. And I admit I don't know - no conspiracy theory here, I think if something in the environment has affected people's immune systems, it was not intentional.  The planet is a more polluted place than it was hundreds of years ago, and there are more people on it. The intersection between pollution and people is bound to be reflected in their health eventually - asthma being one direct example.

Q: What do you think of LLMDs?

A: I think like other doctors in that there are good ones and not-so-good ones?

And just to be clear on the matter, because some people aren't aware of this: Not all LLMDs are ILADS LLMDs. Some are, and some aren't, and having the ILADS affiliation means different things to different people... I know of a number of non-ILADS LLMDs who are skilled doctors, and non-ILADS doctors who are not so skilled. You have to spend time doing your own individual evaluation.

Seriously, I think LLMDs I know the most about treat patients for genuine cases of tickborne infections in situations where other doctors did not. If more family doctors caught a number of these cases earlier and treated them, there may be less of a need for LLMDs.

I may be biased in this response, though, because I was textbook and not treated by the family doctor who first saw me.

(This response was edited this afternoon for greater clarity... I realized my initial response was somewhat vague.)

Q: If you had one message for scientific researchers in general, what would it be?

A: Please help us get to the bottom of this, end the controversy, and help us find a treatment that is safe and works so that we can get back to having normal lives.

Q: Why are you writing for the Daily Kos this month (May 2011)?

A: Because I thought I'd try something different in observance of Lyme Disease Awareness month, and also see what kinds of discussions come out of writing for a wider audience. 

Q: If you could improve only one aspect of your health right now, what would it be?

A: Living in a pain free body. I can put up with a certain amount of  insomnia and fatigue, but the pain is something I could do without.

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