2 Video: Jorge Benach On Tickborne Disease At Stony Brook

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

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

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

[Time: 1:06:41]




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

16:33 Lifestyle of Ixodes tick described.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

49:30 Start of Q & A session

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

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

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

57:09 Vaccine discussion - brief.

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

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

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

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

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

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


Comments:

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

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

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

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

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

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

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

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

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5 Commentary: Looking At Lyme Groups on Facebook

After there's been much brouhaha over my first forum banning - more than I expected, actually - I'd like to take a little time-out from that to look at the many Lyme disease-related groups on Facebook.

But before I begin, apologies, to those of you who ended up on this page after using google and realizing it's the wrong page...

Sorry, to you who are tourists on your way to Connecticut who just found this page and are scratching your heads after you googled looking for information on Old Lyme and Lyme, Connecticut - I suggest you put "- disease" in your search box in order to remove mention of Lyme disease from your results.

And to the residents of Lyme and Old Lyme, I am very, very sorry... you have probably had enough of your beloved hometowns being associated with a tickborne illness. That really sucks, as both towns have things to see and do which do not involve infectious diseases, like visit the Florence Griswold museum.

The rest of us reading along hope to someday be amongst the residents to your north in Hadlyme... if that name has anything to do with the condition of its residents, that is.

Okay, now that those who are looking for other things have gone elsewhere - such as their fabulous vacation to Old Lyme - you should know upfront that if you are expecting an in-depth review of groups here, that is not what you're going to get today.

Do you know why? Because there are too many groups and pages for Lyme on Facebook.

Just typing "lyme disease" into the search box led to my poor arthritic finger getting worn out from hitting "More Search Results" at the bottom of the page. I don't know where to even begin, and anyone on Facebook who is new to Lyme disease probably won't know either... It's like 300 channels of cable, baby, and nothing on!

Okay, it's probably not that bad, but...

The images to your left are just a fraction of the groups which exist on Facebook for those who want to learn more about Lyme disease. I only posted about three screens of them... I could have copied and pasted more, but I do have a limit to my energy (and sanity) for all of this.

Imagine being diagnosed with Lyme disease and trying to find information and support on Facebook.

The options are overwhelming.

Obviously, if you know to look for a local support group, the task might be easier for you because you can start by looking up the nearest town or city which has a support group.

But there's a lot here to look at... and sort through overall.

Other than by your location, how do you determine where to begin when you are totally new to the scene?

And even if you aren't new to the scene, how do you find specific subsets of groups you might want to join without knowing where to look in advance?

Maybe you want to sort by different categories of Lyme support  or information groups - but there are none organized there to sort by.

Looking at it all, I think one thing that would help is if people got a whole lot friendlier... You all need to get closer together and support one another, it's important in these times.


For example, let's say I'm new to Lyme disease and I want to find friends who can relate to what I'm going through. So I type "lyme friends" into the search, and here's what I get...

Wow, a lot of Lyme friends!

(Again, apologies to the East Lyme Friends and Friends of Lyme groups... I think you are probably waiting to befriend those tourists I was talking about earlier...)

But as for the rest of you - especially those poor 2 people at the very bottom - you seem kinda lonely down there...  And yet, you are friends, too.

Wouldn't it be nice if you got together and all made one giant group of friends?

Or, if that doesn't work - and you are all fighting each other - can't you each at least call yourself something else different?

There are so many places where I can see the possibility for combining forces, really, and that alone would cut down on the sea of groups I am drowning in...

Like you guys...






Ought to get together with these guys...

And you guys...

Really need to talk to these guys...

Maybe these guys...

should seriously work with these guys, too, no?

I also think that these guys...

really need all the support they can get, as Lyme disease has been considered even more controversial to have in their country.

I really wonder sometimes about people's individual stories, too...

Maybe this person should consider....

getting together with this one?

Maybe they can help them with Lyme Disease and support each other in getting well and getting back to class.

On the other hand...

I think these guys...

probably shouldn't talk to these guys...

unless they stop using the word "gay" because it could possibly lead to some heated arguments.

The healthy thing, of course, is to take on the right attitude...

And probably avoid looking at the dark side of things too much.

Including the unfortunate side of Facebook, where Facebook's format and coding just messes everything up. 

Such as...

3 people like this?

No one likes that. 

Bad, bad, Facebook. You're not getting a gift next Christmas. Not even coal.

And not to be outdone by the poorly misplaced "Like" above, there is always the unfortunate placement of seemingly unrelated events to others...

I knew some of us needed medication, but this is ridiculous... 

Okay, "Thorazine Overdose" looks like it's the name of band, but why is it next to entries about Lyme disease?  

Note to bands: If you are holding a Lyme benefit, put that at the top of your announcement.  

Almost last but not least, if you are really lost in all of this and there is no way to find your way around this - someone put together one group to rule them all...

With 488 members - and possibly more now, since I've posted this - there has to be some sort of index or guide to it all!

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3 Forum posting rules I do not understand

Hey folks, hope the past couple of days were good for you - and for those of you who are suffering from Lyme Disease, at least tolerably okay. The holidays can be tough when you aren't doing so well.

I was going to post a post-mortem piece here on the Chicago Tribune article, "Chronic Lyme: a dubious diagnosis", but something else came up I wanted to mention first.

And that is forum posting rules for Lyme patients.

Basically, there is one aspect of them I do not understand nor know how to work with. That, in a moment...

First, I understand the need for confidentiality in sensitive situations. I do. And when it comes to discussing my medical condition and doctor's advice in a forum, I keep our identities confidential when asked. I use a username, and my doctor is "my LLMD" or even just "my MD". When I talk about another LLMD, the phrase I use is, "another LLMD" or "another MD".

I get that. This rule has been used on a number of forums elsewhere.

However, I find it a bit jarring when I post about Dr. Raxlen and Dr. Ryser, when referring to the Chicago Tribune article which mentions them, and the moderator edits my post by changing their names both to "Dr. R".

o-0

Buh?

Given that I discussed both doctors in succession, one paragraph after the other, it might lead the reader to think I was discussing the same doctor - when they are very different doctors with different backgrounds and experiences. And different genders. And different in other ways, too.

I thought to myself, "You could at least have changed one doctor to "Dr. R1" and the other to "Dr. R2", though, I admit, that second one sounds suspiciously like a character from George Lucas' upcoming sequel, "Doctor Droid: The Bot Flies" or something."

I didn't like the post-production editing of my post because I felt the way it was done could lead to confusion.

It confused me even more when I found that in the handful of posts I contributed to that the rule was arbitrarily applied, too.

Dr. Benjamin Luft is an academic physician - but more of an academic researcher, really. Recently mapped 13 genotypes of Lyme. His name got shortened to Dr. L in my post. I don't know why.

Dr. Allen C. Steere is an IDSA doctor, and he diagnoses patients and works in rheumatology, but his name did not get shortened in my post.

And then mentioning Dr. Steere causes issues with other doctors I know of in the Lyme Community who would have the same problem when their names are initialized.

I know of two Dr. S's... at least two. One is Dr. Stricker. Someone else on the forum wrote "Dr. Stricker" and his name did not get shortened.

And I know of more than one Dr. H, too. I think the count is up to, what, three?

But how can I write about them so that people do not confuse them with each other? It's possible other patients will think the wrong thing of the wrong people - or if I'm lucky, hopefully the right thing of the right people?

I think it would really solve the problem if people would determine that one Dr. S is Dr. S1, and another is Dr. S2, and so on. Or wait... would it? Because how do we know from post to post whether or not I've written something that's attributed to Dr. Stricker or Dr. Steere or yet another Dr. S?

Or what if someone else posts about Dr. S? Which Dr. S? One of my original two, or yet a third or a fourth Dr. S I'm not even thinking about?

Crap. That doesn't solve the problem, either. I don't want someone new to the forum to think I am writing something Dr. Steere wrote when it was Dr. Stricker, or vice-versa. They are two very different people.

Heck, I don't think using an initial solves the problem.

There's got to be another way.

*thinks*

Hmmm.

I think it would be best if we did away with initials entirely. Doing so makes it less likely to lead to false attribution by people who are trying to guess which post is about which doctor.

Here's an idea, folks:

1. Have everyone use "my LLMD" or the phrase, "I heard there's an LLMD who does ____" for mentions of an LLMD, unless the LLMD is mentioned in a publicly accessible online source in their own words and that is what you are posting about - for example: an interview with Dr. Stricker on Lyme Disease Research Database, a news article in the Chicago Tribune, a video with Dr. Martz on youtube, a clip of Dr. Jemsek from "Under Our Skin", a book review of Dr. Liegner's book on Amazon, or a publication found on PubMed (e.g. rebuttal letters by Dr. Stricker on IDSA Guidelines). If you're already referring to these things and linking to them, what is the point of writing an initial? The identity of the doctor is right there at the link.
2. Have everyone use the doctor's name when it's a non-LLMD and it is referring to a publically accessible reference to them such as above. Example: "Dr. Sanjay Gupta is the CNN's chief medical correspondent on television", rather than "Dr. G is the CNN's chief medical correspondent on television". Otherwise, use "my MD" or "an MD".

I say this, not knowing a better way to deal with it when it does seem like the rule was arbitrarily applied at a forum I only just joined. If they applied "Doctor Initial" method to literally all doctors, I'd have less trouble with understanding the rule, but if they did, they still need a way to ensure the initialized doctors do not get confused with each other somehow.

Any ideas how to avoid this issue? Short of spelling out all doctors' names?

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