2 Lyme Disease Prevention: Tick Tack Toe Graphic

This is just a brief post with a graphic about Lyme disease prevention created for Spring/Summer 2014 for use on Twitter, Facebook, or any of a number of social media sites. Camp Other's Tick Tack Toe game rules are simple: It is won by all players crossing off all squares to help avoid tickborne disease.

Feel free to share... My only requirements are that you pass it on as it is with no further additions or subtractions - basically don't change it. Enjoy!

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

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7 The New Tick Map Vs. The Atlantic Flyway: Things That Make You Go Hmm.

[Ed. - Overlay map revised Feb. 9, 2012.]

Well, I guess everyone has seen this map from Yale University by now...

Yes, it is a map of Lyme disease risk areas based on tick flagging from 2004-2007 in the above regions, followed by an analysis of those ticks. No matter where one looked, the odds of a tick carrying Borrelia burgdorferi were 1 in 5 everywhere... So be careful out there, huh?

While it's good to let people know there are transition areas where Lyme disease is up and coming, it's good not to be too complacent if you fall into a green zone. Today's low risk zone can be tomorrow's transitional area, and these maps must be accurately updated in order to reflect reality.

Thing is, I haven't been thinking of this map as regards tick distribution and Lyme disease so much as I've been thinking about this map:

Because there is evidence that ticks' distribution is spread not only by mammals which hug the ground - but can also be spread geographically by birds. 

So look at the above two maps. Now look at this, after I scale and resize them to overlap (somewhat off-bias, but best I could get with different projections):

Questions for my readers:

• For those of you along the southern principal flyway, how many of you received an infected tick bite near that flyway, either to its north or south?
• For those of you in northeastern and north central Florida, how many of you received an infected tick bite near that flyway passing over your state?
• For those of you in eastern Canada, can you tell me if you received an infected tick bite near that flyway by the Great Lakes?

I'm looking at this and wondering a few other things, too, like I think these flyways would end up moving a little further north as global warming progresses - so I would expect a greater distribution of infected ticks further north as time goes on. Is there any way to confirm this is what is happening?

This work by Camp Other is licensed under a Creative Commons
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1 Paper: Evaluating Research Quality

This is a brilliant, well-written publication, Evaluating Research Quality, on how to assess the quality of research you are reading - written by Todd Litman at the Victoria Transport Policy Institute - which is "an independent research organization dedicated to developing innovative and practical solutions to transportation problems".

Read Evaluating Research Quality Here: http://www.vtpi.org/resqual.pdf

Todd provides a number of examples of what makes good, well-informed research and what is biased, ill-informed research, drawing from examples in the transit sector but also general examples such as the source of statements such as "Eskimos (Inuit) have 23 words they use to describe snow" and ideas such as "AIDs doesn't kill people, antiviral medication kills people".

The entire document is well worth a look from start to finish, and the "Sixty Four Methodological Potholes" table is an interesting and extensive read. It's more detailed than Carl Sagan's Baloney Detection Kit and highlights some of the same illogical fallacies and bias some have presented in their publications and arguments.

This specific portion could be applied (and I should probably more stringently apply these pointers to papers reviewed here) to Lyme disease research and all research in general, so I want to share it. Credit goes to Todd Litman and the Victoria Transport Policy Institute, who allow republication with credit. (Thanks, guys.)

Research Document Evaluation Guidelines

The guidelines below are intended to help evaluate the quality of research reports and articles.

Desirable Practices

1. Attempts to fairly present all perspectives.
2. Provides context information suitable for the intended audience. This can be done with a
   literature review that summarizes current knowledge, or by referencing relevant
   documents or websites that offer a comprehensive and balanced overview.
3. Carefully defines research questions and their links to broader issues.
4. Provides data and analysis in a format that can be accessed and replicated by others.
   Quantitative data should be presented in tables and graphs, and available in database or
   spreadsheet form on request.
5. Discusses critical assumptions made in the analysis, such as why a particular data set or
   analysis method is used or rejected. Indicates how results change with different data and
   analysis.Identifies contrary findings.
6. Presents results in ways that highlight critical findings. Graphs and examples are
   particularly helpful for this.
7. Discusses the logical links between research results, conclusions and implications.
   Discusses alternative interpretations, including those with which the researcher disagrees.
8. Describes analysis limitations and cautions. Does not exaggerate implications.
9. Is respectful to people with other perspectives.
10. Provides adequate references.
11. Indicates funding sources, particularly any that may benefit from research results.

Undesirable Practices

1. Issues are defined in ideological terms. “Straw men” reflecting exaggerated or extreme perspectives are use to characterize a debate.
2. Research questions are designed to reach a particular conclusion.
3. Alternative perspectives or contrary findings are ignored or suppressed.
4. Data and analysis methods are biased.
5. Conclusions are based on faulty logic.
6. Limitations of analysis are ignored and the implications of results are exaggerated.
7. Key data and analysis details are unavailable for review by others.
8. Researchers are unqualified and unfamiliar with specialized issues.
9. People with differing perspectives are insulted and ridiculed
10. Citations are primarily from special interest groups or or popular media, rather than from peer reviewed professional and academic organizations.

This work by Camp Other is licensed under a Creative Commons
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5 Google Trends On Lyme Disease

I have been having fun with this specialized search tool on Google called Trends, and also an advanced trend tool, Insights. You might want to give them a try here:

http://www.google.com/trends
http://www.google.com/insights

In particular, I've been looking up "Lyme disease" and "Borrelia burgdorferi" and breaking down the search into different data sets by region.

Check this out...

Between 2005 and 2010,  of all worldwide Google searches related to Lyme disease, these were the top keyword searches made:

Notice that most people worldwide have been interested in knowing about Lyme disease symptoms, ticks, and treatment - with tests weighing in at #9.  Some unfortunate people do not know how to spell  "Lyme disease" properly.

Now, take a look at this... Here is a list of the top ten worldwide keyword searches related to Lyme disease which are on the increase between 2005-2010:

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2 Wolfram Alpha On Lyme Disease Diagnosis

So, I'm not sure how familiar my readers are with Wolfram Alpha. If you've ever heard of the Mathematica software package, these are the guys that created it.

Wolfram Alpha is an online tool that uses computational algorithms and data modeling to output objective information on a variety of topics.

In other words: It takes statistics and facts from numerous sources and creates a database on given topics on the fly.

(To learn more about what Wolfram Alpha's online tool does, go here: http://www.wolframalpha.com/tour1.html)

You can go to their homepage and type any term into their search engine and it will build a page based on that term and nothing but that term. Instead of a list of different link results like you see on Google, you get one page with many different kinds of information on that term or topic.

So for fun, I typed "Lyme disease" into their homepage.

The link for that query is this: http://www.wolframalpha.com/input/?i=Lyme+disease

Now, as part of the output for that query, I received the following table of data:

This is one of those moments where my head is breaking, and I can see where they are drawing their data from in the notes below the table - so I need to follow up and see if I can look at the original source for this data.

But just based on what I'm looking at right now, the words "Oh my god, where are they getting these numbers?" escaped my lips.  

According to the footnote, the data is not CDC based, but is based on actual patient visits to US healthcare providers between 2006-2007. I have to wonder why Wolfram Alpha is mining data from this source and not more recent NAMCS/NHAMCS statistics or another source, but it is interesting to see something that is not CDC for a change.

The data in this table does and does not reflect what I've observed online in the Lyme disease patient community.

For one thing, the chart states far more men than women contract Lyme disease and are diagnosed for it than women.  Yet the number of women I see online who discuss Lyme disease outweighs the number of men a great deal.

After reading Polly Murray's book, The Widening Circle, why women are more active online participants and more activist in general has been made more clear to me: the children. If you are sick with Lyme disease, that's bad enough - but if your child is sick, that's worse, and mothers seem to be more likely than fathers to reach out for answers and support online to help not only themselves but their children. (Sorry dads, I don't like the dissing either, and I'm sure a lot of you are active in your child's health - but statistically speaking more women do end up dealing with their kids' health issues for whatever reason.)

This reaching out and forming support groups began with women way before the internet - the internet is just an extension of what happens in real life.

(By 1992 there were over 100 patient support groups for Lyme disease - which kinda chips away at this idea that Lyme disease is a disease spread by reading the internet. What was the internet in 1992? Usenet?*)

But in this table, it's saying far more men get Lyme disease, and I see fewer of them online.

Okay, so another thing about this table,  just so the reader is clear on what they're reading, it doesn't take 22 doctors for one woman to achieve a diagnosis for Lyme disease here, even though I've heard so many stories about this phenomenon - no, what the table means is that for every 22 office visits a doctor sees, one of them will be a woman that gets diagnosed with Lyme disease. 

That one in six visits for men seems really high to me - too high, if you ask me - but in reading the fine print these are estimates and estimates which are weighted for US demographics (how? in what manner?).

I think what's striking about this one year of data is the extrapolation of just how many patients were diagnosed with Lyme disease over the course of 131,748 doctor visits. 

86,700 people in one year... is that closer to reality than the CDC reported 40,000 or so?

I really don't know how much stock to put in this data at all. I feel like writing Wolfram and asking them what gives. How was the estimation made and weighed and why are they drawing their data from NAMCS/NHAMCS - and if so, can they get more recent data or is this it? 

I'm thinking it would be more accurate a head count to get diagnosis numbers from doctors rather than the CDC, because not all cases are reported - but I don't know how reliable these numbers are or how the estimation was computed.

Update:

Just to add to this, check out this other table generated from the same data set:

Interesting.

Now look at the ratio for the number of  men who are diagnosed with Lyme disease to the number of women.  And now look at the total number of estimated cases. 

The only factor changed for initial data output was from "primary diagnosis at visit" to "any diagnosis at visit". What exactly does this mean?

Update #2:

Well, isn't this interesting. I googled "NAMCS" and my first result was this:

http://www.cdc.gov/nchs/ahcd.htm

On this page, we learn:

"The National Ambulatory Medical Care Survey (NAMCS) is a national survey designed to meet the need for objective, reliable information about the provision and use of ambulatory medical care services in the United States. Findings are based on a sample of visits to non-federal employed office-based physicians who are primarily engaged in direct patient care. 

The National Hospital Ambulatory Medical Care Survey (NHAMCS) is designed to collect data on the utilization and provision of ambulatory care services in hospital emergency and outpatient departments. Findings are based on a national sample of visits to the emergency departments and outpatient departments of noninstitutional general and short-stay hospitals."

So wait. This IS data from a survey the CDC knows about?

What percentage of these diagnosed cases are included in the CDC Lyme disease reported cases?

Why aren't these diagnosed cases mentioned on the reporting page for Lyme disease as a separate category of cases -  even if doctors did not fill out an official report?

Or are they mentioned somewhere on the CDC Lyme disease pages and I've missed it? Anyone want to confirm this for me?

Update #3:

Pointed out by an anonymous commenter on the blog just now - from the same page above:

Wow,  let's give the women lots of Ativan and give the guys none?

After reading this, we're all going to need Ativan.

Where they hell are these numbers coming from, though? The footnote here is really not useful.

And I'm sorry, if I am feeling sick with Lyme disease, getting it up is the last thing that would be on my mind... that must refer to a preexisting drug regimen. Even then... ouch.

I really have to wonder about these numbers.

Update #4 (hopefully the last?):

Okay, so I think I've answered some of my own questions here:
http://www.cdc.gov/nchs/ahcd/ahcd_faq.htm

Q. How are the data used? 

A. NAMCS and NHAMCS data are used to statistically describe the patients that utilize physician services and hospital outpatient and emergency department services, the conditions most often treated, and the diagnostic and therapeutic services rendered, including medications prescribed. The data are used by public health policy makers, health services researchers, medical schools, physician associations, epidemiologists, and the print and broadcast media to describe and understand the changes that occur in medical care requirements and practices. The data are disseminated in the form of public health reports, journal articles, and microdata files. 

Q: Can the ambulatory medical care surveys be used to find out how many people have a certain diagnosis?

A: No. The ambulatory medical care surveys (NAMCS and NHAMCS) are not based on a sample of the population. They are based on a sample of visits rather than a sample of people. The data can be used to find out how many ambulatory care visits were made involving a certain diagnosis. To get an idea of utilization of ambulatory care in the population, the number of visits can be divided by the population of interest to get a rate of visits for a diagnosis of interest.

Okay, partially answered. I still have to wonder how public health policy makers, epidemiologists, etc. use this data, though... and how closely this sample of visits maps to reality.

I really don't think anyone has a true picture of how extensive Lyme disease is and how many people have persisting symptoms of Lyme disease pre- and post-antibiotic treatment, and it would be useful to know how many cases physicians actually diagnose and treat versus report to the CDC as those are different numbers.

Even then, these surveys are only representational of doctor caseloads over a one week period during a given year - they are not solid figures.

* This is not all there was, but there were only 26 web sites in the world at the end of 1992.

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14 Chart: Ways To Discuss Your Position In An Argument

Referring back to this entry: http://campother.blogspot.com/2011/05/repost-lyme-disease-rant-wall-of.html, here is a chart that shows different kinds of interactions one can have during a discussion with opposing positions.

From observation, discussions where parties hold conflicting views tend to degenerate and become either flaming troll wars or stalemates when anything from contradiction on down through namecalling is applied.

When Counterargument, Refutation, or Refuting the Central Point are used, the discussion is far less likely to degenerate into a flaming troll war and is more likely to be productive - people are more likely to walk away from the discussion not only having a better understanding of others' views, but also having a clearer understanding of what they themselves do not understand or where they lack knowledge...

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0 Repost: Lyme Disease: Money & Chronic Mayhem

The following is a repost of an entry from yesterday's Daily Kos.

This past February, the Republican-led House of Representatives proposed a budget that would have cut millions of dollars from science agencies that fund Lyme disease research as well as research for other infectious diseases. These cuts would have not only lead to funding levels well below those proposed by Obama when he tabled his budget request more than a year ago, but also well below the 2010 levels they have been operating under since October.

At the National Institutes of Health (NIH), a cut of just over 1% amounts to a loss of $323 million, including $50 million that Congress has specified will come out of funding for buildings and facilities on the agency's campus in Bethesda, Maryland.[1]

At the same time, the Centers for Disease Control and Prevention (CDC), in Atlanta, Georgia will have its budget cut this year by 11.5%, or $742 million.

These two agencies, NIH and CDC, are largely responsible for nationally funded surveillance and research on Lyme disease in the United States today. They are at risk for the more serious proposed cuts to be carried out in 2012, which is likely to have a major impact on Lyme disease research since there is very little privately funded research on tickborne diseases.

Lyme Disease Surveillance, Diagnosis, and Funding

The following chart depicts the steady increase of Lyme disease cases which are reported to the CDC by state health departments and physicians across the country.

It should be noted that back in 2002, the CDC stated that in highly endemic areas, for every case you see depicted on this chart, there could be at least six to twelve times more cases which are not reported.[2]

If one were to extrapolate that each case reported came from an endemic area, that would mean anywhere from 180,000 to nearly 480,000 actual cases of Lyme disease were contracted in 2009, and the number is growing.

Given there are variations in which tickborne diseases are most likely to be contracted nationwide, the average number of unreported cases may be more than twelve times higher in highly endemic regions and less than six times higher in regions which are not as suitable for tick habitat expansion.

But this misses a point.

Even at the baseline of roughly 40,000 reported cases (through testing, both confirmed and considered probable) per year, that is a LOT of cases of Lyme disease.

That's almost up there with how many people get the flu every year - 43,696 cases of Novel A influenza were reported in 2009.[3]

That's right up there with HIV - of which 36,870 diagnosed cases were reported in 2009.

But the actual reported cases are only a slice of the whole - it only documents instances where people have been TESTED for Lyme. Just as with the flu and HIV, what the actual number of people is who contract Lyme disease is not entirely known.

Even the CDC has stated in its own report:

"Between 2008 and 2009 there was a 3.6% increase in confirmed cases and 35.6% increase in probable cases. Much of the increase can be attributed to variability in surveillance practices, although evidence of true emergence exists in certain areas. Because of the burden on endemic states posed by Lyme disease surveillance, some states have modified surveillance protocols to better manage limited resources. States using modified methods, including case estimation, might report decreased case counts."[3]

Also, it is important to note that reporting of nationally notifiable diseases to CDC by the states is voluntary. Reporting is currently mandated (i.e., by state legislation or regulation) only at the state level, so the list of diseases that are considered notifiable varies slightly by state.

There are reasons why getting a grip on the scope of the problem is elusive for patients as well - it's not just an issue of surveillance and affects people individually:

Some tickborne diseases which look like Lyme disease in all respects may not show up in current standard Lyme disease blood tests.

For example, Borrelia lonestari produces a disease very similar to Lyme disease known as Master's Disease - which most Lyme disease patients just lump under "Lyme disease" on support groups because it pretty much causes the same symptoms for people. They get a rash, but test negative on standard Lyme disease blood tests.

Some tickborne diseases which look like Lyme disease in all respects may never have a rash.

In a similar scenario, investigators in southern Spain identified several patients with atypical Lyme borreliosis, who were serologically reactive with Borrelia burgdorferi antigens, but who lacked classical erythema migrans skin lesions and who originated from a region of the country where the recognized tick vector of Lyme borreliosis was distributed sparsely. Indeed, blood cultures subsequently revealed a relapsing fever Borrelia sp., genetically distinct from B. burgdorferi and transmitted by an entirely different tick species. In this case, discovery of a novel disease agent occurred because these patients did not meet the established case definition for Lyme borreliosis (Anda, et al., 1996; Guy, 1996).

If people contract a tickborne illness and no EM rash is seen, and they get a blood test that does not meet the CDC case definition for Lyme disease - they aren't reportable even if history and symptoms match.

This is important for anyone reading along to know: If you or a loved one is bitten by a tick and gets sick with symptoms of Lyme disease, you need to know that Lyme disease is ultimately a clinical diagnosis. In other words, if you or a loved one does not meet criteria for surveillance purposes that does not mean you do not have Lyme disease. See: http://www.cdc.gov/ncidod/dvbi/lyme/ld_humandisease_diagnosis.htm

In a number of cases, a doctor will see that a patient has a rash and just treat the patient for a skin infection - not knowing that it is Lyme disease.

Not all Lyme disease EM rashes look exactly like a bull's eye. They can come in somewhat different shapes, be solid up to the bite mark, and even be somewhat bluish or look like a bruise. [4] (See: Variations on Lyme disease rashes.)

Not all cases of Lyme disease which are treated are reported.

A person could be sick with all the symptoms except an obvious EM rash and have a history of a tick bite - but still have a negative blood test. This can happen early in infection with a hidden rash - it can also happen due to recent antibiotic treatment for something else.

Some people are misdiagnosed with other conditions in the first place.

Their doctors either think they have a viral infection, chronic fatigue syndrome, fibromyalgia, or some other condition which is not Lyme disease. This diagnosis could lead to another uncounted case as Lyme disease was not suspected and no tests were conducted - maybe no rash was found nor a tick bite recalled. Later blood tests may reveal the disease once it has already moved to the late stage when it is harder to treat effectively.

Knocking On Neuroborreliosis' Door

To add to the troubles of diagnosing garden variety Lyme disease in its acute stage, it is estimated that in the United States and Europe, roughly 12-20% of Lyme disease patients will go on to develop neurological complications of Lyme disease or neuroborreliosis (IOM Report; HPA, 2011).

The actual number of people who develop neuroborreliosis is less certain because of the same factors listed above - and lumbar puncture tests are only somewhat accurate at detecting Lyme disease within the first two weeks of infection, which is much earlier than blood tests detect it.

I've speculated that the reason why so many patients complain of neurological and cognitive symptoms with Lyme disease is that they were misdiagnosed or undertreated for Lyme disease early on, when the infection already affected the central nervous system and brain.

Data on Lyme disease with persisting symptoms would be good to have in this instance -especially if one can look at case histories, symptoms, and serology and determine if roughly 4,000-8,000 people a year (or more, not knowing actual cases) who are projected to get neuroborreliosis are, in fact, those who are most likely to suffer with persisting symptoms.

Early detection and treatment of neuroborreliosis in specific (which requires higher doses of antibiotics and IV treatment for a month is recommended) may prevent the number of people who have developed persisting symptoms and eliminate a lot of suffering, pain, and hardship for thousands of individuals and families.

During the time of the 2010 Institute of Medicine conference on tickborne infection, Dr. Brian Fallon, head of Columbia University's Lyme and Tick-borne Disease Research Center stated:

"The NIH does not fund trials on treating chronic Lyme disease and the IOM are hesitant to push for further studies on antibiotic treatments, because the jury is still out on whether chronic Lyme disease results from an extended inflammatory reaction to the Lyme bacteria Borrelia burgdorferi in the United States after it has been eradicated by a short course of antibiotics."[5]

This - even though as mentioned in a previous diary here - animal studies have found Lyme disease bacteria DNA through PCR and spirochetes in autopsies performed on animals after antibiotic treatment. And those were just a fraction of the studies.

In the most recent Institute of Medicine report on tickborne illnesses ([6] p.7-15), it stated:

"Turning to the literature pertaining to patients with chronic persistent symptoms, Fallon noted a number of areas need additional research. A European study compared patients with neurologic Lyme disease to those with erythema migrans 3 years later and found that 50 percent of those with neuroborreliosis experienced persistent symptoms versus 16 percent of the EM patients (Vrethem et al., 2002). These results suggest that follow up studies on chronic symptoms, rather than focusing solely on early EM, should focus on the subpopulation of patients who present with neurologic or other disseminated symptoms."

So perhaps my speculation is worth following up on.

$$$$$

But all of this takes money. All of this takes a concerted effort from researchers to look at Lyme disease not just from a position where they are encouraged to improve vaccine development and tests - but encouraged to look at how the infection affects hosts and treatment.

The majority of Lyme disease studies conducted by federal agencies are by the NIH-NIAID.

The NIH-NIAID has funded the greatest amount of tick-borne disease studies - a total of 404 studies comprising 85% of the funding from all agencies and organizations. The CDC has funded 19 tick-borne disease studies from 2006 to 2010, 7% of the funding from all agencies and organizations. NIH-NIAMS has funded 15 tick-borne disease studies all between 2006 and 2009. The remaining agencies USDA-ARS, NSF, NIH-NINDS, US Army Public Health Command, and USDA-NWRS have each funded five or less studies between 2006 and 2010.[6 (B-1)]

The above chart shows that after 2009, funding for all tickborne disease research was combined - so how research funds were allocated for different purposes in 2010 is unclear based on this report which was included in the Institute of Medicine's October 2010 workshop on tickborne diseases.[6]

What is known is how spending for tickborne disease research has been allocated in the recent past, and that requested budgetary increases or even requesting funding at the same rate is threatened by budget cuts.

In 2009, in terms of tickborne infections, Francisella studies received the most funding at $190m (52%) followed by Borrelia studies at $122m (33%). [6 (B-7)]

In 2010, Borrelia research (Lyme disease plus other Borrelia bacterial infections) ate the largest portion of the NIH research pie for the first time in history.

While $122m would take care of all my financial worries (and a good portion of yours!) for my lifetime, when it comes to your research dollar - $122m does not go very far - and really not that far for certain populations and subjects if you slice it a certain way.

In terms of the total tickborne diseases pie:

Microbiological studies received the most amount of funding at $210m (57%) with a total of 304 studies. The next highest study type was Prevention/Education studies, which were allocated $83.8m in funding (23%) for a total of 73 studies. Combination of study types were allocated $47.2m (13%), Treatment studies were allocated $17.1m (5%), Environmental studies were allocated $5.8m (1%), and Surveillance studies were allocated $3.5m (1%).

So looking at this, keep in mind that those treatment studies are aimed at acute cases of all tickborne diseases - and not aimed at studies for treatment of those with Lyme disease who have persisting symptoms. $17m on the face of it is not that much of a budget. This is our national program for study on tickborne infections... and it might run a few high schools for a year.

And in terms of surveillance studies - getting an accurate count of probable and confirmed cases for all tickborne infections in United States - funding surveillance is only 1% of the budget. That's only $3.5m (which is about what it costs for some guy's sweet brownstone in New York City or a fine little Victorian in San Francisco).

While I could never afford that - especially after having my health ruined by Lyme - surely there can be more funding allocated for accurate surveillance, including followup studies to ensure those with chronic symptoms are evaluated for neuroborreliosis? Surely there is more money that could be reallocated for studies to help Lyme disease patients with persisting symptoms?



References:
[1] Nature News: US budget a taste of battles to come Nature 472, 267-269 (2011)
http://www.nature.com/news/2011/110419/full/472267a.html
[2] CDC: Lyme Disease -2001-2002 http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5317a4.htm
[3] CDC Summary of Notifiable Diseases (MMWR) - 2009 http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5853a1.htm
[4] Lyme Disease Foundation: Variations on Lyme disease rashes. http://www.lyme.org/gallery/rashes.html
[5] Nature News: Scientists push for Lyme disease trials http://www.nature.com/news/2010/101014/full/news.2010.542.html
[6] Institute of Medicine. Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases.
http://www.nap.edu/catalog/13134.html

Addtional References:
Dr Pedro Anda PhD, Waldo Sánchez-Yebra PhD, Maria del Mar Vitutia Dvm, Esperanza Pérez Pastrana Bsc, Isabel Rodríguez BA, Nancy S Miller MD, P Bryon Backenson MSc, Jorge L Benach PhD. A new Borrelia species isolated from patients with relapsing fever in Spain. The Lancet. Volume 348, Issue 9021, Pages 162 - 165.

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0 Chart: Effectiveness of different alternative medicine ingredients

I found this link on alternative medicine online that you might find interesting:

LINK: A visualization based on the effectiveness of different alternative medicine supplements, spices, oils, and herbs

Each item represented there is based on PubMed and Cochrane reports on large human blind placebo-controlled studies only.

If you click on the bubbles, you'll be taken to abstracts which support the use of those particular alternative medicines for specific conditions.

Note these directions found at the bottom of the page before you go there:

"The higher a bubble, the greater the evidence for its effectiveness. But the supplements are only effective for the conditions listed inside the bubble. (Mouseover the bubble to see what I mean.) 

You might also see multiple bubbles for certain supplements. These is because some supplements affect a range of conditions, but the evidence quality varies from condition to condition. For example, there’s strong evidence that Green Tea is good for cholesterol levels. But evidence for its anti-cancer effects is conflicting. In these cases, we give a supplement another bubble."

The chart is Flash based, but there is a link to a non-Flash version there if you prefer that (iPhone users take heed.)

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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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0 Free or Cheap iPhone Apps for Lyme Disease Patients

This past weekend, I took a look at some  iPhone (also iPhone Touch, iPad) applications that iTunes had available that might be of use for many Lyme disease patients.  I went in search of ones which were rated good to excellent, free or inexpensive, and downloaded them myself to give them a try.

This is the short list of what I've looked at so far that I liked, with general descriptions supplied by the app company, screenshots, and then some comments. (All prices in USD)

1) iLog Lyme

Application Type: Medical Log

$1.99
Requirements: Compatible with iPhone,
iPod touch, and iPad. Requires iOS 3.0 or later

Lyme Disease can be a debilitating disorder which may affect all parts of your body. Having the disease can be challenging to say the least, which is why iLog Lyme was developed. iLog Lyme can help you track your symptoms and hopefully your progress as you deal with the many and varied problems associated with Lyme Disease.

Features:

• Easy drop down menus - minimal typing.
• Email your symptom history using the weekly or monthly selection. You pick the start date, iLog Lyme brings up your symptom history for the correct time period.
• Medication log. You enter in your medications and dosage and it saves it. No more carrying around a piece of paper with a list of all your medications. They'll be right at your finger tips.
• Has a Common Symptom feature for entering in your daily logs. If there are common symptoms that you experience on a daily basis - just add them to the common symptoms database and turn on the feature. Then whenever you enter in a new daily symptom log, your common symptoms are already populated. (If you don't want to use the Common Symptoms feature simply turn it off for that day - your common symptoms will be still be there, they just won't pre-populate your daily log. When you are ready to start using them again, simply turn the feature back on.)
• Symptom lists cover the majority of all body systems.
• View your symptoms on your device either by day or by week. Simply choose the start date.

We now have a Facebook page:
http://www.facebook.com/pages/App-iLog-Lyme/128260200570444

In addition, a portion of the sales from iLog Lyme will be donated to the International Lyme and Associated Disease Societies as well as the Michigan Lyme Disease Association.
http://www.ilads.org
http://www.hvcn.org/info/mlda/support.shtml

NOTE: iLog Lyme is in no way a substitute for proper medical care. iLog Lyme should not be used to diagnose or treat medical conditions as it is only a method to track symptoms that may be experienced and it should be used in conjunction with your health care professional.

Things I Liked About It:

• It is relatively straightforward to use with no complicated settings.
• Each one of these menus, such as "Musculoskeletal System" has a wide variety of symptoms listed under each to choose from. The symptoms lists really do have Lyme patients in mind.
• Each symptom can be rated using a descriptive pain scale: No Symptom, Mild, Bothersome, Restricts Activity, and Severe.
• You can create a template of all your Common Symptoms - symptoms you usually experience - and save them to apply to a different day's entry so you do not have to fill out every category from scratch.
• You can view your symptoms for a daily or weekly report to make comparisons.
• You can email a weekly or monthly symptoms report to someone else (like your LLMD).
• You can record a list of medications you are currently taking.
• Buying this app supports the patient community - something few apps can claim.

Things That Could Use Improvement:

• It does take a long time to initially get through all of the symptoms lists to check them off. I know the Common Symptoms template helps you save time, but it's still a long process.
• Viewing symptoms daily requires looking at each category of symptoms individually rather than having a report that looks like the one you would send in email, listing all symptoms. Listing all symptoms to view in the same window would be useful.
• Being able to generate a chart for each symptom - or at least to be able to select a given number of symptoms and view their scale rating over time - would be a great way to show progress and setbacks.
• The medications aspect of the app is not well integrated. There is no notification system or pill tracker tied to it, and the list of medications does not get added to the email symptoms report, either.

Overall thoughts:

I really like the symptoms list for being comprehensive and the ability to mark each symptom for pain/functionality. I think its best virtue is that you can carry the Common Symptoms list over to each entry as much as possible, so as to cut down on having to select the same long set of symptoms over and over. Its second best virtue is that you can select a range of time periods and send a copy of all your symptoms to your LLMD or another doctor.  I'm going to continue using this for a while and see how it goes... I might stick with this just for the Lyme/TBD specific symptoms.

2) Dragon Dictation


Application Type: Voice-to-Text Utility

Free
Requirements: Compatible with iPhone,
iPod touch, and iPad. Requires iOS 4.0 or later.

Dragon Dictation is an easy-to-use voice recognition application powered by Dragon® NaturallySpeaking® that allows you to easily speak and instantly see your text or email messages. In fact, it’s up to five (5) times faster than typing on the keyboard.

With Dragon Dictation you can also dictate status updates directly to your Social Networking applications (Facebook and Twitter) or send notes and reminders to yourself….all using your voice.  So when you’re on-the-go, stop typing and start speaking – from short text messages to longer email messages, and anything in between.

Dragon Dictation supports a multitude of global languages. For a full list of currently supported languages visit www.dragonmobileapps.com.

Note: Dragon also has applications Android and Blackberry users can download. See: http://www.dragonmobileapps.com/android/flex.html FlexT9 for Android
http://www.dragonmobileapps.com/bb/dragonforemail.html Dragon for E-Mail for Blackberry

Things I Liked About It:

• It is very easy to use.
• It is WAY quicker to speak the words for your Facebook status than type them. Amazing.
• It saves my arthritic wrists and elbows from extra grief. It may save yours.
• It integrates well with Facebook and Twitter.
• By default, you can set it to a few other languages if you speak them: German, Spanish, French, Italian.
• You can pull your Contacts list into the app so they are more easily recognized.
• You can set the app to detect when you stop talking so it stops recording.
• You can copy and paste the text into any app. This is one of the best parts, in my opinion.

Things That Could Use Improvement:

• The way the app works, you cannot use it to take dictation when you are not using either 3G or wifi. It would be nice to be able to use the app offline without sinking bandwidth.
• You need a strong and stable network connection or you could lose part of your post - or it may lag.
• Not needed for me, but for others: If you have an older iPod touch, you will need a headset with a microphone to use this app. This warning should be explicit on the iTunes app page.

Overall Thoughts:

I really like it. It saves wear and tear on my joints, it's easy to use, the price is right, and it is so much faster to use than my little i-keyboard. It seems to understand my speech with a high degree of accuracy. I intend to use it as much as I can - provided I'm in a private place and not using a laptop already. 

3) iHealthTrax

Application Type: Medical Log, Pill Tracker

$5.99 / Also Free (version has small ads)
Requirements: Compatible with iPhone, iPod touch and iPad. Requires iOS 3.0 or later.

Remembers your illness history so you don't have to!

• Keep separate calendars for various people (great for keeping track of illness / health in your family)
• Record notes as often as every day
• Export data as email

Useful for doctor's appointments...

• Consult with Illness Tracker to report dates of illness, fever, etc.
• Password protection (go to settings to activate)

On each calendar day, you may record the following:

• Custom notes
• Pain scale (1-10)
• Indicate that medication was taken
• Fever and temperature (Now multiple times each day!)
• Doctor's appointment
• Indicate that you are sick

Things I Liked About It:

• You can set an exact time each symptom began.
• You can create a custom symptom of your own if existing symptoms aren't enough.
• You can record the time each symptom comes up.
• You can rank your pain for an entry from 1-10 (but not Allie Brosh's awesome pain scale).
• You can mark a specific day as one you saw a doctor.
• You can record a fever multiple times during the day, using either F or C.
• You can keep notes for each daily log entry.
• You can list pulse and blood pressure in each daily entry.
• You can list medications you took in each daily entry.
• You can create profiles containing all of the above for different family members.
• Each profile contains the user's name, birthday, doctor's name and number, and additional notes.
• There is a nice visual summary you can view of more than one entry.
• You can set a password, back up your data to your desktop, email your data in text or Excel format, and send various numbers of logs from 1 week to all logs.

Things That Could Use Improvement:

• What seems to be initially a good idea, fails in the execution of what it could be. Integrating a real pill tracker into this would be very useful, but it's not there. All you have is the ability to list what medication you took today - there is no push notification or reminder, nor is there an indication of how many pills you started with and how many you have left. RxmindMe has this functionality.
• The pain scale only applies to a general pain for the entire day. You can't record changing pain levels over the day - nor can you record each symptom's pain level like you can in iLog Lyme.
• Graphing progress would be very useful. Here we are recording all this data, but there is no way to aggregate it and show either a chart mapping improvement over a given time period or to pick out high blood pressure and pulse and show trends. A visual chart generated using certain inputs would be welcome here. The closest you get to this sort of view is the summary window.
• The little box that gives you the option to mark it as "sick day" instead of a normal day is pretty laughable for Lyme patients. I think even for most non-Lyme patients, this box is extraneous... I imagine most people don't track symptoms unless they are feeling off.

Overall thoughts:

It's a good little app for what it does, and it does it for free. The paid version isn't much better - the only difference is ads. If the ads do not bother you, you may want to get the free version and see how it works for you if you don't already have a symptom and pain tracking app you love. Other apps on the market with similar features are not getting as high scores and even some paid apps lack some features this one has.

4) RxmindMe Prescription Reminder and Pill Tracker


Application Type: Advanced Pill Tracker

Free
Requirements: Compatible with iPhone,
iPod touch, and iPad. Requires iOS 4.0 or later
(Android version coming soon)

RxmindMe is a prescription reminder that uses multitasking to alert you every time you need to take a prescription. We allow you to enter all your prescriptions, setup reminders, and track when you have taken them.

We can handle the most complicated of reminders, if you are having trouble scheduling a reminder - please email our support.

Current Features Include:

• NINE different types of reminders: Every "X" Number of Days, Hourly, Daily, on specific dates, weekly, on a particular day of the month, as needed, on a particular week of a month, or even just recording pills you took out of the blue
• Prescription Quantities now count down as you mark your reminders as 'Taken' will automatically update the prescription quantity!
• Export all your prescription data with ease! (Export Data in More menu)
• Take picture of your prescription (Devices with Cameras Only)
• Email Prescription History (Both email and Comma Separated Value - Imports into Excel and Numbers)
• Family Members for Medications
• The entire FDA Drug Database to search for your medications
• SECURE - All of your prescriptions are stored on your iPhone, no information pertaining to your prescription is EVER sent to our server
• All reminders are reoccurring
• Easy to use interface to turn reminders on - off - or delete them
• Historical tracking of your prescriptions and when you took them
• Now uses Multitasking to give you your notifications, allowing you to be using other applications and receive reminders.
• Input of all your prescription information (But, you don't need to input your prescriptions to setup reminders)
• Passcode to prevent wondering eyes on your phone to see your prescriptions (Don't you hate it when people ask to borrow your iPhone?)

Overall Thoughts: 

I'm not listing pros and cons here so far, because so far I think this app is really good for what it does and I have no complaint. About the only unnerving thing so far is that the software engineers have put a warning on the site saying they know there are false or "ghost" reminders that show up and they are working hard to fix the bug. 

I need to use this app over a longer period of time to see if it is buggy  - but so far I love its features.

5) We Breathe

Application Type: Relaxation & Breath Control

Free

Requirements: Compatible with iPhone, 

iPod touch, and iPad. Requires iOS 3.0 or later.

When you’re stressed, you often take shorter breaths. To teach yourself to relax, it’s important to take longer breaths. We Breathe v.1 helps you to do this.

When the balloon expands, you breathe in. When the balloon goes down, you breathe out. Simple.

Also includes a Stress Slider to set your stress level, a color setting for your balloon, and a timer to remind you when to relax during the day.

As well, your balloon will syncronise with every other We Breathe user on the planet. So, you’ll all be breathing in and out at the same time!

Things I Liked About It:

• It is WAY easy to use. Even with brain fog.
• You can adjust your breathing speed based on how much stress you are experiencing.
• You can change the color of the balloon to several different colors if you don't like the default.
• You can set up a reminder to do your breathing exercise at the same time up to 7 days a week.
• It can be relaxing or distracting once you get into just focusing on your breath.

Things That Could Use Improvement:

• The pencil button is counterintuitive for one used to change balloon color. I thought it was going to take me to an area to write notes. A palette button should be used for changing color.
• Once again, here's an app where I think being able to chart progress would be nice. How many days did I complete my exercises successfully? How many days did I blow them off? How many days did I have the slider set to high vs low stress, and when? This would be good to record and show as a graph or chart.
• It takes a while to get the balloon to contract and expand after clicking on it. Shortening this time would be nice.
• The added functionality setting a timer for a duration to practice would be good.

Overall thoughts:

It's a simple app and I didn't have many expectations out of it. It's okay. I've found another breathing app that does more of what I want, though, and will be using that over time to track my progress. Once I've used it a while, I'll review it.

6) TBD - Tick Borne Diseases (RSS reader)


Application Type: Special interest RSS reader

Free
Requirements: Compatible with iPhone,
iPod touch, and iPad. Requires iOS 4.1 or later.

Tick Born Diseases (TBD) is an application that allows you to receive the last 15 publications on tick-borne diseases published in PubMed each new connection. The studies are classified according to the following order : Lyme Disease, Tick, Babesia, Tick Born Encephalitis (TBE), Bartonella, Anaplasma, Ehrlichia, Rickettsiae, Turalemia, Q fever, Rocky Mountain spotted fever, Crimean-Congo haemorrhagic fever (CCHF).

Things I Like About It:

• It is pretty straightforward and easy to use. 
• It breaks down RSS feeds into different tick borne diseases so you can view them depending on interest or which coinfection you have. (... More section = more tick borne infection rss feeds )
• There is a separate section just for tick information.
• Once the abstract is loaded in the window, you can zoom in and out to view it.

Things That Could Use Improvement:

• It is another bandwidth user, and it would be nice to be able to save abstracts and view them offline as an option.
• It would be nice if it aggregated rss feeds from other peer reviewed sources outside of PubMed. It seems pretty limiting to just list abstracts from one peer reviewed site.
• It would be nice to add general science articles from Science Daily and other science sites.

Overall Thoughts:

In a pinch when I'm sitting in a coffee shop and just hankering for the latest PubMed reports, I might use it. But probably after I've already checked support groups, email, and other sites... I'm probably more likely to want to look at abstracts and full papers at home on my laptop - where I can actually read the print more easily and view any charts and tables without hassle.

7) Immunity


Application Type: Action Game

$0.99

Requirements: Compatible with iPhone,
iPod touch, and iPad. Requires iOS 4.0 or later.


Hordes of exotic microbes threaten to cut your tropical vacation short. Strategically command your immune system to defend your intestines from pathogenic bacteria, viruses, and parasites. Immunity features 30 frantic, story-mode levels and a survival mode for endless, educational fun.

Overall Thoughts:

On the one hand, this game appealed to me, because it's about me versus these nasty bugs and parasites that are trying to drill their way into the epithelial cell walls of the villi in the intestine - and I get to stop them.  On the other hand, there isn't much here in terms of an instruction manual up front - you learn as you go along, and sometimes the process is slow.

I like the Japanimation feel to the storyboard - the story being a young man gets on a plane and takes a trip overseas, and during the course of his adventure he meets with exotic and not-so-exotic pathogens that you have to help him fight off. 

It is awesome to be able to patch together someone's villi to prevent the bad bugs from getting in, and to periodically get new immune system cells of different kinds to fend off the invaders. This is easy when it comes to the young man's travel story. 

But if you look at the first (home) screen, there is a button that says "Endless". And this is not the young man's story at all - no, this is the story of someone with AIDS or HIV, and you are in an intense battle to try to keep invading organisms out of the walls of your villi. Believe me, it is a much harder version of game play at that level.

As a Lyme patient, I recommend this for the catharsis you can feel out of defending someone against infection - go with the story for that, though, and not "The Endless". You will die too soon, and that's depressing. I also recommend that you don't expect too much out of yourself at first - it's not an easy game to play overall, and may be physically hard on wrists and fingers. 

If you bow out of this one, there is always Centipede Ultra... You can pretend you are blasting the shit out of spirochetes there.

---

One app I can definitely mention in closing here that I did not include was Tick Doctor. Most Lyme disease patients will find it of little utility and may experience some level of disgust from its full color photos of ticks and notes on how to identify them. They also mention some of the illnesses they carry and mention a few symptoms - but I think the information is limited, is outdated, and is so much less than the average Lyme patient knows by now that it is of no use.

So, these are my reviews for now. More coming in a future edition.

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

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