0 Admin: PSA To All Camp Other Google Account Users And Readers

A message from Camp Other to readers:

Keep your eyes on Google and how they treat your accounts - especially if you have and use a pseudonym online connected with Google+ accounts.

BEFORE:

http://googlepublicpolicy.blogspot.com/2011/02/freedom-to-be-who-you-want-to-be.html

"When it comes to Google services, we support three types of use: unidentified, pseudonymous and identified. And each mode has its own particular user benefits.

Unidentified. Sometimes you want to use the web without having your online activity tied to your identity, or even a pseudonym—for example, when you’re researching a medical condition or searching for that perfect gift for a special someone. When you’re not logged into your Google Account (or if you never signed up for one), that’s how you’ll be using our services. While we need to keep information like IP addresses and cookies to provide the service, we don’t link that information to an individual account when you are logged out.

Pseudonymous. Using a pseudonym has been one of the great benefits of the Internet, because it has enabled people to express themselves freely—they may be in physical danger, looking for help, or have a condition they don’t want people to know about. People in these circumstances may need a consistent identity, but one that is not linked to their offline self. You can use pseudonyms to upload videos in YouTube or post to Blogger.

Identified. There are many times you want to share information with people and have them know who you really are. Some products such as Google Checkout rely on this type of identity assurance and require that you identify yourself to use the service. There may be other times when it’s more desirable to be identified than not, for example if you want to be part of a community action project you may ask, “How do I know these other people I see online really are community members?”

Well, this all sounded like a reasonable division to me, and that's worked fine for me for ages.

AFTER:

But during the past month, Google apparently began shutting people's Google accounts down across the board without warning - because users were using pseudonyms.

I only learned about this within the past 24 hours (I guess I've been too buried in research about antigenic variation and serology to notice the news lately) and was disturbed to hear about what happened to GrrlScientist and her accounts.

Apparently a lot of people's accounts were suspended without prior notice, and outrage over this spread across the blogosphere. Search online for "privacy, pseudonyms, and google accounts" and you are likely to find more information on this action from more than one web site.

At any rate, looking at the stream of events unfolding, I've had to wonder if Camp Other blog would be next. If so, I'll be posting an announcement on Lymenet Europe letting people know where the site would be getting moved - somewhere without a policy that discriminates against anonymity - and pseudonyms in particular.

THE STORY TODAY:

But, it may be that my search for an ISP to host my blog would be premature, as I just came across an announcement from Bradley Horowitz on Google+ that came from a discussion between Robert Scoble of Rackspace and Vic Gundotra, Senior VP of Social at Google - the most important snippet posted below:

MYTH: Not abiding by the Google+ common name policy can lead to wholesale suspension of one’s entire Google account.

When an account is suspended for violating the Google+ common name standards, access to Gmail or other products that don’t require a Google+ profile are not removed. Please help get the word out: if your Google+ Profile is suspended for not using a common name, you won't be able to use Google services that require a Google+ Profile, but you'll still be able to use Gmail, Docs, Calendar, Blogger, and so on. (Of course there are other Google-wide policies (e.g. egregious spamming, illegal activity, etc) that do apply to all Google products, and violations of these policies could in fact lead to a Google-wide suspension.)

Camp Other doesn't use Google+ in the first place, so I am making the assumption based on the above that my blog will continue to operate on Blogger as it has been.

If something changes... well, you know where to find me. And if Lymenet Europe for some reason goes down, I'll post to CanLyme, and so on - to other Lyme disease related forums which have not unceremoniously banned me.

CO

PS: Just in case you wondered, I make a regular backup of all the site entries. Reformatting the content and moving to another web site host may not be a trivial matter, though, so I don't want to do it unless there's a very compelling reason.

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9 Borrelia Infection in Ticks in Norway

ScienceDaily (June 24, 2011) — The most common tick-borne disease in humans is Lyme borreliosis. Extensive field and laboratory tests have revealed that the Borrelia bacterium is present in a larger proportion of ticks than has been shown by earlier studies. Another finding is that migratory birds play an important role in the spreading of ticks and pathogenic agents borne by ticks.

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Comments:

The researcher working on this project, Vivian Kjelland, found a strong correlation between the spread of Borrelia bacteria and birds in Norway - and discovered a decline in the hare population had little to do with Borrelia infection.

Perhaps the most interesting or surprising part of her research is this: Kjelland's doctoral thesis indicates that there is a lower incidence of the Borrelia bacterium in ticks that have sucked blood from deer and moose than in ticks collected from the ground/vegetation.

One thing to keep in mind with research in Norway as well as other countries is that the shouts of "kill all the deer" in order to stop Lyme disease may not be the best decision, as ticks will colonize other animals and take blood meals from them instead. What happens all depends on the local ecology and which host animals are available.

We can't kill all the potential hosts for ticks. Other solutions to fighting Lyme disease and related tickborne illnesses need to be found.

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7 NC Teen Develops Red Meat Allergy After Tick Bite

http://www.necn.com/07/23/11/NC-teen-develops-mysterious-meat-allergy/landing_health.html?&apID=3aca58cd7234448db6b71f59f1aae82f

ELIZABETH CITY, N.C. (AP) — About a year ago, 15-year-old Andrew Treadway of Currituck got a tick bite while camping near Charlottesville, Va.

The bite did not appear serious. When he returned to his Moyock home, his mom looked for the tell-tale bulls-eye rash indicating Lyme disease and the flulike symptoms from Rocky Mountain spotted fever, but all appeared normal.

Little did they know that the tick bite would later trigger an allergy to red meat. Today, the Treadways want others to know about the newly discovered allergy that puzzled their family for months.

Making the connection between the tick bite and the allergy was not easy. Several months after the tick bite, the teenager began complaining of unexplained stomach aches and migraines. Ann Treadway said she was baffled by what was causing the problem.

The real alarm came a little later when the family went camping with friends...

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2 Oh, Canada: Infected Ticks Found In Alberta

Just a quick FYI to my friends in Alberta, Canada: Be careful out there...

Alberta issues Lyme disease warning

Posted By: NCCID on July 21, 2011
Calgary Herald, July 20, 2011

Infected ticks turn up in city, Edmonton

As health authorities urge Albertans to guard against Lyme disease after five infected ticks were found so far this year, a Calgary mother says she's frustrated her sick daughter hasn't been tested for the illness despite repeated requests.

The pinhead-sized ticks carrying the Borrellia burgdorferi bacteria that cause Lyme disease were spotted recently on four dogs and a cat, through Alberta's surveillance system, said the province's chief medical officer of health, Dr. Andre Corriveau.

http://www.calgaryherald.com/health/Alberta+issues+Lyme+disease+warning/5129973/story.html

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Canada is increasingly becoming an area of Lyme disease activity. What actions are the provinces taking to address this issue and make sure people are diagnosed and treated early?

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13 Lyme Disease Western Blots And Antigen Presentation

I've been thinking of this particular passage on page 504 of the book, Borrelia: Molecular Biology, Host Interaction and Pathogenesis:

"The general picture to have emerged over the years is that IgG and IgM antibodies to the spirochaete develop slowly and are directed against an increasingly diverse array of proteins as infection progresses (Craft et al, 1986; Dressler et al, 1993; Nowalk et al 2006). The earliest responses are to flagellin B (FlaB) and p66, followed by OspC (25kDa) with responses to a number of additional antigens, such as VlsE, fibronectin-binding protein (BBK32), FlaA (37kDa), BmpA (39kDa), and decorin-binding protein A (DbpA) developing as B. burgdorferi disseminates (Coleman and Benach, 1987; Engstron et al, 1995; Bacon et al 2003; Aguero-Rosenfeld et al 2005; Wilske et al, 2007). This temporal pattern is consistent with the notion that the bacterium draws upon an expanding repertoire of differentially expressed proteins once within its vertebrate host, including phased expression of paralogous surface-exposed lipoproteins.
[...]
The clinical ramifications of these observations are significant. Because approximately half of patients with EM do not mount detectable antibody responses to the pathogen, lack of seroreactivity cannot be used to rule out the diagnosis of EM (Steere, 2001; Dananche and Nadelman, 2008). Seroreactivity increases substantially following therapy for EM (Vaz et al, 2001; Dandache and Nadelman, 2008), indicating that killing of the bacterium enhances processing of spirochaetal antigens."

Prior to the 2006 IDSA Lyme disease guidelines, the first set of Lyme disease guidelines which were written contained this specific remark on laboratory criteria for diagnosis:

"Significant change in IgM or IgG antibody response to B. burgdorferi in paired acute and convalescent phase serum samples"

It seems to me that this would still be an important guideline to follow, yet I am aware of a number of stories where patients stated their family doctors gave them an ELISA blood test early after infection, were told it was negative, and because of this, were not given further testing.

This is an inappropriate response, especially given what is known about antibody response in Borrelia burgdorferi infection over time, and given the lack of adequate antibody response early in infection.

Retesting using the western blot several weeks after the initial test - even if negative - makes sense. And if someone is displaying unusually long and moderate-severe flulike symptoms even if there is no EM present, confirmation testing is sensible.

Given this is a serologically progressive infection, why isn't it possible to determine how far long the infection is to some degree (under delayed acute care, at the very least) if the antigens present in a specific order over time? In later infection, it is harder to detect - but doesn't ospA present itself again in neurological infection? Something I have to look into...

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19 Chicago Tribune's Dubious Writer Is At It Again...

For those who were not here when this blog started,  a reminder:

This blog began because I wrote commentary in response to last December's Chicago Tribune article, "Chronic Lyme: a dubious diagnosis". I was not pleased with how the topic of Lyme disease was discussed in that article because it focused on doctors' disciplinary records and self-reported charlatans working in alternative medicine - and did not focus on science and clinical microbiology.

The best of my efforts to deconstruct that article is here:
http://campother.blogspot.com/2010/12/chicago-tribune-chronic-lyme-dubious.html

Now, several months later, there is an article in the Chicago Tribune by one of the same authors of the original "Chronic Lyme" article - this time on one specific doctor who has a number of lawsuits and charges on his record.

This was posted early this morning:
http://www.chicagotribune.com/health/ct-met-illinois-lyme-doctor-20110713,0,3542528.story

Well Trine, you've done it again.

My issue with Trine Tsouderos' writing is that it is always written in such a way that the content emphasizes the most controversial topics that could possibly be related to chronic Lyme disease without actually discussing chronic Lyme disease itself.

It's sensationalism, and it is about getting the audience's outrage in print. It's an open invitation for the general public (who is fed up with mainstream medicine and bad doctors, and often rightly so) and skeptics (who do not think Lyme disease can be a persistent infection) to comment on how horrible Lyme literate doctors must be in general if someone specializing in the treatment of chronic Lyme disease has a background such as Dr. Piccirillo's.

Tsouderos' article written last December also focused on two doctors with disciplinary actions on their records. Never once did Trine mention that there are many doctors - both ILADS and non-ILADS doctors - who treat Lyme disease patients with longer than standard courses of antibiotics and help people get their lives back. These doctors have many years of experience treating patients and do not have the kind of disciplinary record which is on display here.

I have a major issue with Tsouderos' previous and current writing on chronic Lyme disease because it does not mention this nor does it mention any of the science and research behind Lyme disease and persistent symptoms.

As an investigative reporter, she could be putting her skills to use and advance science education for the general public if she wrote about research which demonstrates that Borrelia burgdorferi spirochetes can persist after antibiotic treatment and pointed out that researchers are not 100% certain of their significance. They argue over it, just as the IDSA and ILADS argue over it. It would also be beneficial if she mentioned the IDSA's position on supporting an autoimmune response and the molecular mimicry hypothesis as the cause for post-treatment Lyme disease symptoms - but she has never even gotten this far to explain why any researchers support a non-infectious model for persisting symptoms.

Reporting on these aspects of post treatment Lyme disease or what has been called chronic Lyme disease is what fair and balanced reporting would entail. Instead, what we get is pure and unmasked sensationalism geared to getting the most rise out of the audience.

All Trine seems to do is repeatedly point out a litany of bad medical decisions or charges related to a handful of doctors - and in the case of December's Chicago Tribune article - at least for one of those doctors, the charges were dropped.

There is no mention of the Lyme disease patient community's position that doctors who treat Lyme disease with more than the IDSA Lyme disease panel's guidelines recommended amount and duration of antibiotics are subject to being reported by insurance companies solely for that purpose. Nor is there mention of what evidence there is to support the patient community's statements on these reports. Instead, there is no mention of this at all - whether Trine thinks these reports are genuine or not.

Now, with what follows, I am probably going to receive some hate mail because of what I am about to say, but so be it. (I will create a special tab, "Hate mail" at the top of this page just for that purpose. If anyone writes in support of what I say, you too will get your comments on a separate page, "Love letters", or something like that.)

But anyway, I have to call it as I see it:

I have issues with Dr. Piccirillo's decision.

If Dr. Piccirillo was inspired to become an LLMD because he himself contracted Lyme disease and suffered due to it, I admire his desire to help others who have suffered a similar fate. But at the same time, was he hoping that his record would go unnoticed and he could start anew?

Dr. Piccirillo, you realize that doesn't happen when you enter the deep end of the pool in the Lyme disease controversy, don't you? Everyone and everything is scrutinized. To go into one of the most controversial jobs with a number of marks already on one's record adds to the existing public misconceptions and generalizations that are held about LLMDs.

Your decision to make this career move affects patients and reflects on everyone working in the field. If you were in fact by your own admission not the best surgeon and your record reflects charges of incompetence - then was picking a potentially high profile, high demand job such as an LLMD the way to go?

I appreciate your stated desire to do better and your own acknowledgment that you weren't cut out to be a surgeon. I take that with sincerity and at face value. And I understand that it's not your fault that Tsouderos wrote about you this way - through no fault of your own, your story and your past has been dragged out before the public for all to see.

Unfortunately, your past is exactly what they wanted to put on display and what many people would want to know about if you were to become their own doctor. As someone who has the lives of other people in your hands, you are going to be held accountable for what you do and do not do. It follows you; that's how it is.

But to be quite pointed about it, had you been the best doctor in the world and helped many people and harmed none - would Tsouderos have written about your work? Probably not. In terms of Lyme disease reporting, so far Tsouderos is a one trick pony.

Everyone who has read this kind of article realizes that this isn't fair and this isn't balanced reporting. How do you change this situation?

If you want to see balance in the kind of press doctors have been getting, then the media has to provide more coverage for and emphasize doctors who are mainstream, take insurance or charge reasonable fees (e.g. Dr. Cathryn Harbor), are willing to treat patients longer term with antibiotics based on case studies and research, and monitor and care for patients diligently.

We need more experienced doctors to come forward and publish their case studies and conduct new research on longer term antibiotics and other treatments. We need to have the best doctors work on our problems from the beginning and give them more positive exposure, not less. Otherwise, the only kind of story people hear will be the syndicated one which is presented to them across the country in sound bites by Tsouderos and others.

As patients we have our own job to do: Those of us whose symptoms have improved from treatment should be informing people of the positive aspects of treatment and how it has improved our quality of life - and how it has helped many of us return to work and the active lives we had before getting bitten by ticks.

Emphasize the positive. Let people know how treatment has helped you and write and talk about the importance of more research and clinical trials on different treatments for post-treatment Lyme disease. Get the word out there and blog about it, and ask your doctor to work with others and publish research.

This controversy seems never ending and I want it to stop, but things won't change unless what we're doing changes.

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