0 The Daily Kos Speaks...

At the end of the most recent edition of Friday Four I wrote about the Daily Kos' Lyme Disease Awareness series I'd found online.

I found some of the comments and content of interest, so I posted the links I'd found with some speculation about this year's upcoming Lyme Disease Awareness series, and lo and behold, someone from the Daily Kos stopped by to leave me a comment on the Friday Four post.

I copied it to this post for anyone who might be interested in the series and would want to sign up for a Daily Kos account to comment on posts there.

One disclaimer before reading:

Posting the link to the Daily Kos Lyme Disease Awareness series should not be regarded as an endorsement by Camp Other for all content and comments posted there. The below information is provided simply to let readers know about it and check it out.

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Hey Camp Other!

Thanks for the shoutout about the Lyme Disease Awareness series on Daily Kos!

Our 2009 and 2010 series can be found: http://www.dailykos.com/blog/LymeDiseaseAwareness

Any of you who read Daily Kos know that DK4 was just released, and now there's better formatting for groups, so the link for Lyme Disease Awareness for 2011 will be found here: http://www.dailykos.com/blog/Lyme%20Disease%20Awareness

The new series for this May is under development and we're excited about it - contributors are both DK members and guests. Diaries will cover a wide range of topics related to Lyme from dealing with ticks in a back yard to how being able to choose one's heath care is a fundamental part of personal democracy to the similarities of spirochete cousins, syphilis and Borrelia burgdorferi.

Am hoping you have a DK UID and shoot a message over there - would love it if you'd cross post a diary as part of our series!

Really like what you've done with your place over here.

Happy Healing,

MG

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I'm not sure whether or not I am going to take them up on the invitation to write for them yet. I think it's a sure thing to say that I'm going to wait until I feel better to decide.

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0 Administrivia: Notes & Future Topics

Just popping in here for a moment amid fighting off some strange viral infection to leave a few short notes for my readers:

• When I'm feeling particularly unwell above and beyond my usual unwell, posting frequency may slow down. I'll try to give advance notice in comments or in a post like this one.
  
• Here's your notice: My posting frequency is slowing down now because I'm unwell.
  
• In general, new posts are less likely to be made during the weekend. What do I mean by "weekend" given everyone reading is in different time zones? Refer to island time.
  
• If I'm near a computer, I will check comments in the moderation queue during the weekend and post them.
  
• I may or may not respond to comments during weekends.
  
• Friday Four posts are sometimes posted as late as midnight Friday, Honolulu time (-10 h UTC/GMT).
  
• Reader comment & mailbag has included the following requests for further discussion: the immune system and how to build it, alternative medicine, XMRV, Morgellons, and the effectiveness of canine Borrelia blood tests.
  
• I plan to write an entry or two on each of these topics in the future. There is no guarantee on how soon each will be addressed. The timeline for each is dependent on my health, availability, other preexisting or newsworthy posts already in the pipeline, and the amount of time needed for additional reading and research to address each issue.
  
• Lymenet Europe has some interesting threads on Lyme disease organizations throughout Europe. I recommend viewing some of them, as well as guidelines different countries use. Tip: If you use the Chrome browser, you can translate web sites in other languages into English with a click of a button.

And now your moment of patient experience zen... This is something I think about when I get sick or am more symptomatic than usual - maybe some of you reading along will see yourself in it, too:

All I have to add for now. I'm going to lie down.

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3 The Friday Four

In this edition of the Friday Four: how llamas are helping the fight against C. Diff infection, a new strategy to reduce antibiotic-resistant infections, how antibiotics may make fighting the flu harder,  a chart on US Gov't R & D funding for 2011 - plus two bonus links.

(And apologies for the island time posting - still Friday here, but not much longer.)


1) Researchers step closer to treatment of virulent hospital infection: Unique antibody from llama provides weapon against Clostridium difficile

Llamas

Researchers from the University of Calgary, Canada discovered that a simple antibody found in llamas may be the answer for future drug development against C. difficile. C. difficile is becoming increasingly resistant to existing antibiotic treatment such as metronidazole and vancomycin.

Llamas have antibodies which are very similar to human antibodies, and also another class of antibodies which are about 1/10th the size of human antibodies and are easier to engineer into drugs.

These antibodies - known as single-domain antibodies - bind to the C. difficile toxins with high affinity and interfere with the toxins' ability to damage cells.

Dr. Jamshid Tanha, the corresponding author of the study from the National Research Council in Ottawa says that understanding how camelid antibodies work will ultimately allow researchers to develop a new treatment for this important disease and potentially others.

"We are currently working with Dr. Ng's group to determine why these antibodies are successful," says Tanha.

Comment: Research in this field is especially important to patients who use high doses or long courses of antibiotics and run the risk of infection with C. difficile. Next to antibiotic resistance, C. difficile infection is one of the biggest problems with long-term antibiotic use, whether administration is oral or intravenous.

Original Source Publication:
The article, Neutralization of Clostridium difficile toxin A with single-domain antibodies targeting the cell-receptor binding domain, is published in the Journal of Biological Chemistry http://www.jbc.org/ and written by Greg Hussack (NRC and University of Ottawa), Mehdi Arbabi-Ghahroudi (NRC and Carleton University), Henk van Faassen (NRC), Glen Songer (University of Arizona), Kenneth K.-S Ng (Alberta Ingenuity Centre for Carbohydrate Science, and University of Calgary), Roger MacKenzie (NRC and University of Guelph), Jamshid Tanhan (NRC, University of Ottawa and University of Guelph).

2) Economics and Evolution Help Scientists Identify New Strategy to Control Antibiotic Resistance

Pseudomonas aeruginosa

In the March 2011 issue of Genetics, the scientists show that bacterial gene mutations that lead to drug resistance come at a biological cost not borne by nonresistant strains. They speculate that by altering the bacterial environment in such a way to make these costs too great to bear, drug-resistant strains would eventually be unable to compete.

A team of scientists from the University of Oxford, U.K. have taken lessons from Adam Smith and Charles Darwin to devise a new strategy that could one day slow, possibly even prevent, the spread of drug-resistant bacteria.

"Our study shows that concepts and tools from evolutionary biology and genetics can give us a boost in this area by identifying novel ways to control the spread of resistance," said Alex Hall, PhD, researcher from the Department of Zoology at the University of Oxford.

The research team measured the growth rates of resistant and susceptible Pseudomonas aeruginosa bacteria in a wide range of laboratory conditions. They found that the cost of antibiotic resistance has a cost to bacteria, and can be eliminated by adding chemical inhibitors of the enzyme responsible for resistance to the drug. Manipulating the cost of resistance may make it possible to prevent resistant bacteria from persisting after the conclusion of antibiotic treatment.

Comment: As the IDSA is moving to tighten the use of antibiotics in the US (and possibly worldwide) in order to prevent growing antibiotic resistance, it's important to research how to inhibit resistance. Research such as this could allow hospitals to continue to prescribe antibiotics with less concern about resistance to potentially deadly infections such as MRSA. It will also help in the fight against various tickborne infections.

Original Source Publication:
A. R. Hall, J. C. Iles, R. C. MacLean. The Fitness Cost of Rifampicin Resistance in Pseudomonas aeruginosa Depends on Demand for RNA Polymerase. Genetics, 2011; 187 (3): 817 DOI: 10.1534/genetics.110.124628

3) Antibiotics may make fighting the flu harder

H1N1 flu virus

Scientists knew that friendly bacteria in the intestines could help stop disease-causing bacteria from setting up shop in the gut. And this is one of the reasons Lyme disease patients take lots of probiotics between antibiotic doses - to prevent disease-causing bacteria such as C. difficile from setting up shop and producing toxins.

Some previous experiments hinted that gut microbes could influence how well the immune system works, but researchers thought the effect was mainly confined to the digestive system. Now there's evidence that friendly, or “commensal,” bacteria help defend against viruses affecting other parts of the body by keeping the immune system on alert for viral invaders, a research team discovered.

“What’s fascinating about this [new study] is that there’s a distant regulation of resistance to viruses by gut microbiota,” says Alexander Chervonsky, an immunologist at the University of Chicago.

Researchers found that the presence of "friendly" bacteria helped fight off viral infections that could affect the lungs - something that came as a total surprise.

Antibiotic treatment impaired the mice’s ability to make an important flu-fighting molecule called interleukin-1 beta or IL-1 beta, which is necessary to combat influenza and other viruses. Gut bacteria are constantly priming the immune system to make IL-1 beta, keeping the immune system vigilant against flu and other viruses. The researchers aren’t sure yet which bacteria in the gut are responsible for the virus-defense mechanism, but they are looking at Lactobacillus as a potential candidate for study.

Comment: Here is more evidence that keeping one's gut and intestinal flora in balance is important to one's overall immune system. Patients who are taking antibiotics are encouraged to keep up their probiotics to maintain a healthier balance, and more research is needed to find out which commensal bacteria are the most beneficial for combatting both bad bacterial and viral infections.


Original Source Publication:
T. Ichinohe, et al. Microbiota regulates immune defense against respiratory tract influenza A virus infection. Proceedings of the National Academy of Sciences. Published online ahead of print, March 2011.

4) Not so much a link, but something to think about: Where US Gov't R & D Funding Is Spent...


Source:LiveScience

Comment: So $32.09 billion goes to the NIH, and everything else gets a smaller slice of the research pie.  Why is that? And are contracts in other areas that are awarded potentially falling under that mysterious "All Other" slice of the pie?

Bonus links for today: The Daily Kos Series on Lyme Disease Awareness 2010 raised the issue of Chronic Lyme disease and March 10, 2011's Chronic Tonic Column focused on one person's Lyme disease experience.

It's interesting to see people writing about Lyme disease at The Daily Kos - not your typical Lyme disease discussion venue. I don't know when or if to expect any Lyme Disease Awareness posts for this May, but I plan to check out the site then and see if there are new ones.

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9 Three Conditions: Scientific Evidence for Chronic Lyme

During the past year, the question of how to make the case in support of the existence and treatment of Chronic Lyme Disease (CLD) came up in The FASEB Journal.

In one critical response, the writer said that in order to support the existence and treatment of CLD, the following conditions need to be met:

1. Develop a precise definition of what is meant by “chronic Lyme disease” so that it can be distinguished unequivocally from other medical conditions with similar symptoms.
   
   
2. Provide direct and unequivocal evidence that a patient suspected of having chronic Lyme disease really has a persistent B. burgdorferi infection that justifies antibiotic therapy.
   
   
3. Demonstrate, from the results of published, peer reviewed, randomized, placebo-controlled trials, that extended antibiotic therapy is beneficial and safe for the treatment of chronic Lyme disease.

Back on LN, one of the questions I posed was, "What is chronic Lyme disease?".  I posted it in all seriousness, wanting to know what people's responses were and why, in part because I was looking for consensus on the definition from the patient perspective. 

This is still an exercise I think worthy of working on - to make an effort to fulfill these three conditions in order to support or refute what is actually happening with CLD and put an end to the protracted arguments about it. 

I realize that the patient perspective and responses are only one piece that can define what is meant by CLD, and microbiologists and clinicians must confirm and define the condition - but patients' experience of their own illness and empirical evidence around it form a chunk of the data on which definitions by professionals rest.

But back to the above... How can anyone go about systematically providing the evidence required to meet these three conditions?

How many other diseases and conditions have been defined with precision, as is asked of CLD in #1? How many have not been defined with precision, but still meet the definition of a disease?

Is  #2 just about proving Koch's postulates? Yes or no? How can this be done with a xenodiagnosis study? Without a xenodiagnosis study? Remember, not all emerging diseases have had to fulfill all of Koch's postulates to be defined as they are.

Does #3 conditionally rest on the evidence of #2? This is something I always wondered and asked myself. 

Each of these three conditions to be met has its own challenges in providing evidence. How would you go about meeting these conditions, if money were no object and you had time to set it up yourself?

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16 The Rumor Mill

So, some interesting rumors have been getting back me. Normally, I wouldn't care, but some of these are just so out there that I've decided to nip some in the bud.

I've already discussed the question of being Lyme Enigma (I'm not) so we can drop that one right away.

Some of the rest of the overheard stuff:

Is CO the maintainer of LNE or some other group? Is CO against ILADS because they showed up on LNE? Is CO against all alternative medicine? Is CO an infectious disease specialist? (What the... I already answered that in the FAQ.) Is some weird other group of people behind the creation of CO? (Love ones like that - the more vague the assertion, the better the rumor?) Is CO this... that... Etc.

Two things I have to state, right up front:

I began writing this blog to point out the poor journalism in The Chicago Tribune and to do a complete deconstruction of the horrible writing of Chronic Lyme: A dubious diagnosis. And it took off from there. There was no particular plan, really, beyond that.

I focused more on science because it's an interest of mine, and not as much on the patient experience. I did a bit of that, too, but I never set out to make it a focus.

Lately I've been focusing on other topics that were not originally the focus of this blog - but situations change, and sometimes due to circumstance or something newsworthy to me, I will write about something else. Like censorship. And if it is a topic that continues to interest others, I might give it more time, but I never want to lose the science aspect of the blog.

In terms of groups...There is no group of people behind the creation of this blog. It was one person's idea: mine. I may be on LNE and other groups and lists, but I'm not maintaining them. Also, as a member of any group, I'm not on here to represent any of them - I'm writing independently, for myself, and posted content is my idea.

Now, on to the rest of the rumors...

I'm not anti-ILADS. I appreciate very much that ILADS exists and has helped so many patients. I am pro good doctor and pro good LLMD, regardless of whether or not that doctor is a card-carrying member of ILADS or not.

I am not happy with doctors who give the profession a bad name because of what they do outside of work or against their better judgment.

I'm not against all alternative medicine. What I'm against is the idea of desperately turning to anything and everything without some evidence it will be helpful and worth the money.

I understand desperation... I've been close to suicidal with pain. I've taken herbs and have had acupuncture. In my experience, the herbs I used were okay and the acupuncture was really good at alleviating pain. So far, what has done the most good for me has been antibiotics and antiprotozoa medication, and there's plenty of evidence those work for what I've got. Acupuncture runs a close third.

I'm not against alternative medicine but I am against how people with chronic illness - including Lyme disease and other tickborne infections - are targeted for the sales of certain protocols and herbs and supplements.

I've seen a lot of spam. And then when it hasn't been obvious spam, it's been more subtle soft-sell approaches like people joining mailing lists in order to slowly tell others what's been working for them - only to find out later that they are a seller of the product or get a cut of the profits.

I don't like this - I want to hear from other patients who have no stake in the company talk about an herb or supplement. Like my issue with the IDSA, I don't want any conflict of interest or bias in my selection of alternative medicine. So for me, it's very important to know the person writing is another patient just like me - and is speaking from experience and not trying to sell me something.

I don't know if you can imagine how many supplements and treatments I've seen come and go. A lot. It'd be good to keep a reliable database somewhere showing which treatments gave the largest number of people the most symptomatic relief and the lowest number of side effects.

To add one more thought on this, I'd like to see more research on more effective antibiotics and technology to fight Borrelia and stop it in its tracks; do something to stop the antigenic variation because I think that's a big part of why it's hard to beat.

I'm not an infectious disease specialist. The thought of it turns my stomach right now... Even if I were one, I would be in the outlier group of them who would have a lot of questions about what to do to come up with better guidelines.

On being this, that, or the other, Etc. People keep trying to guess more personal information about me. I don't want to reveal it for my own reasons. If I drop hints, they're inadvertent, and I'd really rather focus on what's been written about Lyme disease and tickborne infections. If this changes, I'll let you know. Otherwise, the rumors will just have to continue.

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

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0 Books: Mini Review on "Bull's Eye"

I've been reading bits and pieces from Bull's Eye: Unraveling The Medical Mystery Of Lyme Disease.

Someone told me it may be a frustrating read, so I was prepared for that - but it hasn't been that difficult to get through, actually, once you get past the fact that the author can write about Alan Steere more matter-of-factly than anyone I know.

That's one of the main criticisms I've heard other Lyme patients who have read it have about the book - but after reading a huge chunk of it, I'd have to say that it is more balanced about discussing the controversy than I thought it would be and that much of it focuses on things other than Steere: the history of Lyme disease in Connecticut, history of Borrelia in Europe, general research on Borrelia burgdorferi, epidemiology, difficulties in diagnosing Lyme disease, problems with serological testing, the Dearborn criteria, coinfections, shortcomings in the IDSA view of Lyme disease, the Ed Masters story, experimental treatments, genomes, vaccines, and legal issues.

And it's an easy read, for what it's worth - for the most part, people who aren't knowledgeable about Lyme disease or its controversy can jump right in and begin getting an idea of the big picture pretty quickly.

One of the things that makes it readable is the author, Jonathan Edlow, MD,  can outline procedures using metaphors and analogies in a basic way so that those reading this kind of material for the first time can 'get it', and I've found  the Ambiguity in the Lab chapter to be one of more interesting reads because of how it was written.

In the book, the author describes for the reader how Western blot tests are done for Lyme disease:

"Like the ELISA, the Western blot tests for antibodies, but it allows the laboratory to find precisely which antigens a patient's blood contains antibodies to - not just whether there are any kinds of anti-borrelial antibodies. 

First, the B. burgdorferi is put into a detergent to break up all its proteins. Each of these proteins has different sizes and each has a slight electrical charge. These proteins (antigens) are placed on a gel to which an electrical current is applied. The proteins then migrate across the gel, which is full of nooks and crannies, rather like an English muffin. Because the proteins have different sizes, they move through the gel at different rates, the larger ones moving more slowly than the smaller ones. After a certain amount of time migrating with the electrical current across the gel, the proteins from the B. burgdorferi have traveled different distances. 

Imagine a massive jungle gym with evenly spaced bars going every which way. A group of people who are four to seven feet tall are instructed to start at one end of the jungle gym and travel through the latticework as far as they can in five minutes toward the other side. In this group of people, ten are exactly four feet tall; ten are exactly four feet, six inches tall; ten are five feet tall, and so on - such that there are seven groups of ten people who are all the same height. 

Since the spaces between the bars of the jungle gym are uniform, the smaller people will be able to travel faster across this jungle than the larger, heavier people. When the five minutes are up, the larger people will be closer to the start and the smaller closer to the finish. Assuming that the participants are equal in their abilities, at the end of the five minutes, the seven groups will settle out in seven distinct regions of the jungle gym. If one were to take a picture of the apparatus at the end of the five minutes, it would show seven bands - clusters of people of the same height - interspersed with bare areas of the jungle gym devoid of anyone.

This is what happens to the proteins from borrelia in the Western blot. They migrate across the gel, through the network of obstructions, at different rates on the basis of their molecular weights. After a specified period of time, the proteins are clustered on the gel at specific regions. They are then transferred (blotted) onto a special kind of white membrane. Specific antibodies (attached to a dye and so that they can be seen) will bind to specific borrelial proteins, and colored bands will appear on the white membrane."

Edlow explains other processes and definitions by using metaphor and analogy throughout the book, making it easier to visualize them. He uses the idea of a machine to sort different kinds of fruit to explain what sensitivity and specificity mean in terms of blood tests detecting infection, and uses different models and makes of cars to help describe cross-reactivity in testing. The way he puts things makes it easier for people with no prior knowledge of Lyme disease and testing to understand certain concepts that they can later build on.

There are other reasons I like this book, and a few reasons I don't, but I wanted to take time aside to share this one aspect.

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