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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0 Dear fuzzy bunny letter

Dear fuzzy bunny,

Yes, that would be you.

Please know that as cute as you are and as much as I appreciate it that one of my social networking friends was wishing me well and put you on my support group wall, you just don't understand.

Yes, I know you, and know the intentions behind your being posted - to cheer me up after a hard day (week? month? year?) of feeling lousy - but to be totally honest? Fail.

What I really need is for there to be a safe place for my frustrations to be aired, and for some well-reasoned plan to improve the life of many patients to be put into effect.

Just so you know, I was really happy when I got my first fuzzy bunny years ago. I was new to having Lyme then, but I thought a few months into it was already a bit too long to have a flu plus mono and arthritis combined. And I was confused, and so glad that I had your round little face to look at in the middle of a 2 a.m. Herxheimer reaction. So relieved to know someone was on the other side of the country who was going through the same experience I was and understood the pain, the isolation, the rejection, and the misunderstanding I was enduring.

But now, it's been years of the same thing. More bunnies than I can count. They kept multiplying, like the denialists. And they didn't help me with my anger and frustration.

Life has been a rollercoaster full of doctors appointments and medical tests, research publications and blogs, networking with people I've never known and even never thought I'd know, and enduring long stretches of pain, insomnia, and grief through it all. It's been time spent trying to understand the system - whatever "the system" is - and how a small committed group of individuals can make a difference. If they can make a difference at all, that is.

But it's also been reflecting on Willy Burgdorfer saying:

"The controversy in Lyme disease research is a shameful affair. And I say that because the whole thing is politically tainted. Money goes to people who have, for the past 30 years, produced the same thing: nothing. Serology has to be started from scratch with people who don’t know beforehand the results of their research.

There are lots of physicians around who wouldn’t touch a Lyme disease patient. They tell the nurse, “You tell the guy to get out of here. I don’t want to see him.” That is shameful. So [this] shame includes physicians who don’t even have the courage to tell a patient, “You have Lyme disease and I don’t know anything about it.”

At least my primary physician had the courage to tell me that, and also told me to keep seeing my LLMD because s/he knew what to do with my condition. It was more support from this unpredicted source for which I'm grateful.

And then there's THIS bit Willy said:

"I am a believer in persistent infections because people suffering with Lyme disease, ten or fifteen or twenty years later, get sick [again]. Because it appears that this organism has the ability to be sequestered in tissues and [it] is possible that it could reappear, bringing back the clinical manifestations it caused in the first place. These are controversial issues for microbiologists, as well as the physicians who are asked to treat patients."

Seriously, bunny? If the man who discovered Borrelia burgdorferi said this in an interview and more people still aren't taking notice - including the Chicago Tribune - something is wrong. Really wrong.

Fuzzy bunny, you aren't helping me solve this problem. I like and appreciate being supported just for being me and for being human and having a rough time, but what I really want is help solving this problem.

I don't want three more months of the life I've had to lead with Lyme - let alone 30 years of the same thing.

Fuzzy, if you're going to do something other than look cute, please ask Willy what we should do, since he knows more about it than I do?

Thanks!

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