Lyme Symposium in Boston – Saturday, November 9th

Dear all,
It is with great pleasure to announce that on Saturday, November 9th, our group, the Neuromuscular Infection Treatment & Rehabilitation Interest Group, will be hosting an event in the Thier Auditorium of the Massachusetts General Hospital (MGH) titled:
Lyme Disease and Tick-Borne Illness Community Conference.
The line-up of speakers include:
8am-9am:  Mark Eshoo, PhD, Abbot Technologies “Direct Detection of Tick-borne pathogens”
9am-10am:   Richard Horowitz, MD “Lyme Disease and Multi-Systemic Infectious Disease Syndrome (MSIDS): A new paradigm for the diagnosis and treatment of chronic illness.” 
10am-11am:   Katherine Lantsman, MD “Prevention Strategies for Tick Borne Illness”
11am-12pm:   Leo Shea, PhD “Neuropsychology of Lyme Disease”
 
For directions, please refer to MGH’s website: http://www.massgeneral.org/visit/directions/
RSVP is required for this event, so please contact James Gilbert, via email: gilberjp1@yahoo.com to confirm the number in your party.
To help us offset some of the conference costs, a donation of $25 per attendee is suggested, which can be made at: https://giving.spauldingnetwork.org/lyme.
Until then, if you have any questions, please do not hesitate to let me know. And, please, feel free to pass this event information along to anyone you feel may be interested.
Looking forward to seeing any and all!
 
Healthy wishes,
Your Boston Group

 

Dr. Eva Sapi to speak in Boston about Lyme Disease

This post is just to remind you all that on Thursday, 8/29 from 7-9pm our group, the Neuromuscular Infections Treatment & Rehab Interest Group, will be hosting Dr. Eva Sapi who will be giving a lecture titled, “BORRELIA: MORPHOLOGY, ANTIBIOTIC SENSITIVITY AND CLINICAL IMPLICATIONS FOR LYME DISEASE.”

Dr. Sapi is an Associate Professor and University Research Scholar at the University of New Haven in Connecticut. She teaches graduate biology courses and carries out Lyme disease research.

We are trying to get a rough head count for the event, so if you are planning on coming, please let us know.

LOCATION: Cambridge Spaulding Rehabilitation Center – 1575 Cambridge St., Cambridge, MA – Chapel Conference Room (Once inside the main doors, simply ask security for further directions to “Neuromuscular Infections Treatment & Rehab Interest Group,”)

PARKING: Please note that since visitor parking is limited at the center, the alternative would be metered parking on Cambridge Street, so please have a few extra quarters in tow just in case.

PUBLIC TRANSPORTATION: The Rehabilitation Center is a 10 minute walk from the Harvard Square Red Line T station.

This event is free and open to all.

Hope to see you there!

Healthy wishes,
Brandi, David, Phuli & James

Wall of Hope

State Representative Theodore Speliotis will be sponsoring a Lyme Disease Awareness Day at the State House in Boston on Monday, April 29th at 11:00am – 3:00pm.  S.L.A.M, the Lyme Awareness of Cape Cod and the Boston Lyme Group will be hosting.

This is an educational event for politicians, doctors and patients.  More details will follow.

In the meantime, I am creating a Wall of Hope that will be publicly displayed during the event.  If you live in Massachusetts and would like to participate, please email your picture with name, town and county that you live in to cosmomomwithlyme@gmail.com.

Lyme Author Being Considered for Pulitzer Prize – Please Help

The following email was sent to me by Microbiologist and Lyme Advocate, Holly Ahern.  Please help us by submitting a letter of support for Mary Beth Pfeiffer!

Over the past several months, Mary Beth Pfeiffer, a journalist with the Poughkeepsie Journal in downstate NY, has written a series of articles that essentially blows the lid off the barrel of misinformation about Lyme disease coming from various public health agencies. Her most recent piece reveals the dangers of Babesia (one of the Lyme coinfections) invading the blood supply. Her series can be accessed via the link below:

http://www.poughkeepsiejournal.com/section/lyme?template=odytheme&theme=lyme

Mary Beth’s piece is being considered for a PULITZER PRIZE! If the series were to win the Pulitzer… well, imagine the press coverage for that! I contacted the Pulitzer Prize office (which is at Columbia University, interestingly) and asked how to submit a letter of support for the piece. They inform me that the author will upload the entire submission (including letters of support and any emails sent in response to the series) and then the judges evaluate everything, electronically.

So, what I’m asking you to do is send either a letter of support (as an attachment) or even just an email in support of the series to Mary Beth Pfeiffer. Her email is:

marybethpf@aol.com

The category she’s submitting to is “Explanatory Journalism.” So in your email, you might mention what a great job Pfeiffer did in “explaining” the concepts and controversies; that although the concept of “chronic” disease caused by a tick borne infection is controversial, you thought that Pfeiffer did an outstanding job explaining the past and present state of Lyme disease medicine in the US; that she was able to chip away at long held misconceptions using solid and credible sources; the significance of the series in confronting a complex medical problem; that her piece highlights the plight of millions of people in the United States who currently can’t get diagnosed or treated for Lyme disease and therefore suffer needlessly; that the series may bring much needed awareness and attention to the Lyme disease controversy…

And, as I asked you last time, please please forward this on to 10,000 of your closest friends!

Important Note: the deadline is January 15th.

Thank you all so much for for past and present help!

Dr. Kenneth Liegner Speaking to Boston Lyme Group – Saturday, 2/2/13

The Boston Lyme Group is very pleased to announce that our February speaker will be Dr. Kenneth Liegner from Pawling, NY. The event details are as follows:

Spaulding Hospital Cambridge
Chapel Hill Conference Room
February 2, 2013 at 1pm

We will be sending out a flyer soon, but we thought to at least get a SAVE THE DATE email sent first.

Healthy wishes,
Brandi and James

ILADS Live Streaming Schedule

If you were unable to attend the conference, here is the schedule of the live streaming so that you are able to listen to all of the speakers:

Americas – December 1 – 2

Europe – December 8-9

Australia – December 15-16

Click on the ILADS LIVE STREAM link for more information.

ILADS Conference

It was so nice to be able to attend the ILADS conference over the weekend and to see some old friends and acquaintances, Jennifer Crystal – Lymedisease.org blogger, Katina Makris – author of Out of the Woods, James Gilbert – Boston Lyme Group, Angeline – Boston Lyme Group, Sheila Statlender – Clinical Psychologist and Lyme Advocate, Tish McCleary – Founder of S.L.A.M and Lyme Advocate, Dr. A. – my former LLMD, and my new LLNP.   It was also great to meet those I have only corresponded by email but have been so helpful, like Lisa Freeman from Lyme Awareness Cape Cod.  I had the pleasure of sitting next to Dr. Horowitz…but didn’t realize it was him until I got up from my seat!  I walked the halls with Dr. Burrascano and Dr. Jamsek, however never had the chance to thank them for all that they have done for all of us.  I also sat with Dr. Lisa Nagy during lunch and spoke with her briefly about Environmental Medicine and the affects the environment can have on your health.

I would love to give a full report about what I learned from each talk, but I think I’ll leave that to the reporters, like Jennifer Crystal.  She did an amazing job at writing about the conference.  Here is one of her posts that I thought was so touching:  When “Caboose” Doctors Go the Extra Mile”.  I suggest ALL of you read it…that includes you…my family, my husband and friends.  ;-)

Recorded sessions of the conference will air on December 1st and 2nd.
If you would like to receive the speaker schedule for the streaming,
sign up at:

http://ilads.org/ilads_media/boston-live-streaming/

and it will be emailed to you 2 weeks prior to the event.

Have a great week!

Brandi

Blumenthal Chairs Senate Hearing on Lyme Disease Prevention – August 30th

The hearing will include three panels. Senator Kirsten Gillibrand (D-N.Y.) will speak on the first panel. As a powerful voice against Lyme disease, Gillibrand will deliver testimony on what legislation is needed to fight Lyme disease from her perspective as a legislator representing the state of New York, which has one of the highest incidences of Lyme disease in the country. Following Senator Gillibrand, three patients – Mark Hopwood of Trumbull, Dwight Harris of Burlington, and Katy Reid of Ridgefield – will speak on a second panel and discuss their experience as Lyme patients and the need for a patient voice in the prevention, research, and treatment discussion.

The third panel will include three Lyme disease experts from Connecticut who will share their perspective.

Hearing will take place this Thursday, August 30, 2012 at 10 AM

LOCATION:
Gen Re Auditorium
University of Connecticut – Stamford
One University Place
Stamford, CT 06901

Please click HERE for more details.

Notes from WBUR Lyme Panel Discussion

These were notes taken by Steve Cabana, at the WBUR Lyme disease panel discussion.  I’m late in posting this, but would like to file it away for others who may be interested in them.  Thank you, Steve for taking such great notes during the discussion!

Notes from 6/28/2012 WBUR sponsored Lyme disease panel discussion. A noted tick expert was the primary speaker, and there was a very valuable discussion of IGENIX and their work toward the end.

Listened to entomologist and state expert on lyme disease, Dr. Thomas N. Mather, a.k.a. the TickGuy, who conducts public education programs on tick-borne illnesses, doing research in Mass and Rhode Island. Why is the lyme disease problem getting worse every year? It is estimated that from New Jersey and New York to Maine the deer population is 1,918,000[17]. The adult stage tick favors a large animal host, mostly white tailed deer. They steal blood from that deer, and undoubtedly pass lyme disease bacteria back to that deer. But the deer, and we’ve done research on this, have a really powerful inane immune response, the lyme spirochette and are able to fend off the infection with their innate immune system. Every single deer in your area, produces about 5 fully engorged adult deer ticks per day that they then deposit along their travel route during the fall. They come out in October, they feed in October and November. Usually by Thansgiving or December first, we get snow and it’s cold, and the activity of the deer ticks dies down. They don’t die, their activity dies down. So, lets do the math, there are 60 days that they are feeding, so 60 x 5 x 1500 eggs produced by an engorged deer tick means every deer can produce = 450,000 larval ticks. As the larval ticks grow to become nymphal deer ticks, the size of a poppy seed, of which you can fit hundreds on the face of quarter. It is difficult, nearly impossible, for an adult to see these nymphal ticks on their skin which is why the infection rates are so high in May and June when they are prevalent. And the adult deer tick is only the size of a sesame seed. When I first moved to Rhode Island, I didn’t see a deer for three months, and I was in the woods doing research all of the time. Now, just last night, I chased one out of my yard, that was looking at us in the picture window, while we were watching television. And that is a deer that could be producing 450,000 larvae right in my backyard, and if your property borders a wooded area, and the deer population is greater than 20 deer per mile the odds are your backyard could be equally at risk.

So, how do you control the deer? That is a real challenge. Right now, we’ve allowed deer to get out of hand, and a lot could be done, but it is so severe. I did work years ago on Naushon Island, one of the Elizabeth islands off of Woods Hole and across from Marthas Vineyard. At the time, Naushon Island had over 600 deer on seven square miles. I don’t think there was anywhere else in the world, at the time, with a larger tick population in our studies. And I thought there’s the answer, they don’t have as many deer on Nantucket, Marthas Vineyard, or the Cape, and don’t have anywhere near the tick biomass. Over the intervening years coyote’s found their way onto Naushon Island, and they decimated the deer population from over 600 to about 60. Twenty years latter in 2007, I took five of my staff and went back to Naushon, and went to our old tick collection sites to determine the biomass levels. Six hundred deer down to 60 did not make much of a dent in the total number of ticks we found. A lot of the studies that are out there say we have to cut the population six down to ten or less deer per mile. Some say coyote’s may be a carrier and it depends on the total ecology of the system. It would be more effective perhaps on islands, since in communities, or towns, if the surrounding area isn’t carrying out a similar program, the deer will just migrate in from other areas.

Are people willing to do targeted strategies? There are only two. You can increase hunting pressure or you can do things to decrease the number of ticks on deer. Another panel member speaks up: I live in Natick with Dover and Medford bordering us. We don’t allow hunting because it is too densely populated and we have a lot of deer. Dover and Medford are experimenting with hunting and I want to see how that works out before we authorize anything in Natick. I want to know if it works, but it raises all kinds of political things in a town. I will get hundreds and hundreds of emails from animal rights people.

There is one company called insect shield in North Carolina. They put Permetherin in clothes for the military, LLBean, REI and it is the best tick shield we have found. You can send a couple pairs of clothes down the them for $16 and they will hold it for 70 washes and you will be safe. If you do it yourself it will only last for six or seven washings. All ticks crawl up. We have downloadable PDF form on our website TickEncounter and you can find out about that. That could be a game changer in reducing the very high infection rates we are seeing right now, if we could get people doing that. Nymphal ticks are in leaf litter. They are going to crawl up the insides of your clothes and up your shoes. So spray your shoes. You can buy the spray at REI and other similar stores. Do that at least once a month or every two or three weeks. What I do in my family is I line up all the outdoor shoes and spray them the first of May, the first of June, the first of July. Who can’t do something three times? Then I put the shoes back. They don’t even know I did it. I just want to protect my kids, my wife, and myself. You can treat your golf shoes. It’s all about lowering the probability of a tick bite. We do experiments. We took Coverse walking shoes, low rider socks, and shorts, a common summer outfit, and then put 30 pathogen free deer ticks on different parts of their bodies. And then let them watch a good movie for two hours. And they had either treated clothes or untreated clothes and then we counted how many tick bites they had at the end of two hours, and there was a greater than 70 times protection if the ticks got on their foot and their shoes were treated.

Deer ticks aren’t really very hardy. They are the wimps of the tick kingdom. They can’t withstand very low humidity. If I put 30 ticks in this glass bottle and left it for 24 hours on this table they would all be dead. They can’t stand low humidity. They need very high humidity. Perhaps global warming has played a role in the increase in tick biomass along with the increase in the deer population. Shady leaf litter areas and edges of forests are where you typically find them because that is the high humidity environment they need to survive. Deer ticks are not going to be in the middle of your sunny lawn, it’s too dry. We’ve done this hundreds and hundreds of times. We go over to your open sun exposed lawn (nothing), then we go to the edge of your propery, where there is leaf litter, shrubs, low foliage and that is where these ticks occur. Over and over again that is what we find. If you have a stone wall, on the border of your property then you have a white footed mouse hotel, which is the other important carrier for nymphal ticks further increasing the risks to your family. We don’t find them in the middle of your lawn. Maybe if you dog dropped them on the spot and you happened to be right there before they dryed out and died, but I don’t think that is a very high probability. You only have to take one step into that wooded edge around your lawn and you’ve magnified your risk one hundred fold or more. On the humidity issue. The wash doesn’t kill ticks on your clothing. Ten minutes of high heat in your dryer before doing the wash will kill them all. Gas dryers outperform electric dryers in the studies we have done.

Synthetic pyrethroids are very effective against deer ticks. People are more interested in minimal risk natural products. There are fungi being developed to control ticks. The CDC about a year ago acted on this and we were the winners of that grant. We just finished our first round of spraying the standard product, the synthetic phyrethroid used by tick companies. We have tried two other products but they were not effective and will be studying others. How fast do ticks move? There are three species, the deer tick, dog tick, and another (the lone star tick) we find less often but it is now being found on the cape and appears to be making inroads into the islands off the coast of Massachusetts and Rhode Island. Every one of those ticks has a different host seeking strategy. It depends on what host they prefer and are used to getting upon. They get up at about the level where the host they hope to get on can be found. You’ll see hundreds of them all at the same height. If you start thinking like a tick you’ll understand how they’ve evolved. If you really want to do go you have to sell pants and shorts people will buy. The lone star tick is very fast. It hunts. It will move meters to get to a favored spot toward host odors. The population of ticks is following bird migration routes. They get left in these places and they either survive or they die. They like coastal areas where the level of relative humidity is high, and they are dropped off in woods and along the coast where their is leaf litter, and high humidity. Once they get established the white footed mouse and the deer move them out into other areas.

Physician on the panel: My oldest son had lyme ruled out three times with an Elisa test. We thought we were being very thorough, and many of these tests were done by my husbands colleagues who meant quite well. The first Western Blot he had was six years into his illness, when he had been misdiagnosed with Chronic Fatigue Syndrome, and it was fully positive for the CDC criteria. Another thing to know is there is no interlab reliability so the same blood sample done with a Western Blot test in different labs will not yield the same result. Those are problems. Another is that some of the bands which are thought to be highly species specific for lyme disease, will be omitted from the usual reporting of most Western Blot tests — so you are eliminating the 34 and 31 band which give you a lot of information about possible exposure. Very few labs report all 16 bands. (IGENX is the most reliable). The Quest and Lab test kits are prohibited from reporting all 16 bands, the FDA guidelines prohibit that. Some people have gone to what has become a more controversal lab, IGENX in California, which has become a heated debate with the mainstream physicians saying they are producing too many false positives. And the so called Lyme literate doctors saying they are reporting all 16 bands, which is why patients are having more luck getting diagnosed by going to that lab. I am not going to say which is right or wrong, but I will say in our situation, in our family, a physician family, six years into this, with two kids diagnosed with Chronic Fatigue syndrome, and a third on the way…. When we sat down and poured over the literature and read for ourselves about the limitations of laboratory testing we were completely flabbergasted and it took us a while to get over it. And we felt like we had to go back to the drawing board and have our kids examined with that lab. So be careful. The current testing is antibody testing. So you are looking at the bodies ability to mount an immune response, so it is kind of indirect. You are not actually testing for the presence of pathogen in the blood. This is controversal, but there are some doctors who believe that the sickest patients can not mount an antibody response and can test negative for lyme, while having the highest lyme spirochetes actually present in their blood. This is not widely excepted. Please do not wait for the test results to come back before starting an eight week course of doxycycline to protect yourself from the dangers of chronic lyme because you only have a short window of less than two months from initial infection where it can be defeated with an 80% success rate. After that the options are not as easy.

Audience member. My daughter tested negative in the Elisa test. And fortunately we had another doctor who knew to test her with the Western Blot from IGENX and she tested positive. It turns out, I am a scientist and I do Western Blotting. So I asked for the Western Blot from IGENX and examined it, and it was clearly positive. We ran into some doctors latter on, who absolutely dismissed IGENX as a kook laboratory, and only believed Quest, for example. Sorry I’m using names here. But the IGENX was absolutely positive. So I put that Western blot test in front of that (skeptical) doctor and asked him, So what is your hypothesis what this band, and this band, and this band is in the Western Blot. It was clear the doctor didn’t know what the Western Blot was, and had no idea how the whole thing worked. And based upon that and some other experiences in that regard, it’s clear to me that a lot of the negative opinion about that particular lab is born out of an ignorance about exactly how things work and it is based upon a trust in other labs, which are perfectly good labs, I’m sure. But I’m just going to speak to IGENX which I think is a good lab.

How can there be such a disparity between labs? – asks the physician on the panel to the scientist.

Well it has to do with antibodies. There are ten, twelve, fifteen ways of making antibodies. I can get antibodies to the same protien from different colleagues, and some of them work and some of them don’t. Even though they were all raised austensibly against the same proteins. I’m simplifying for the audience. Even though they have different sensitivies, and like that, and exactly why one works and why one doesn’t has to do with almost magic and mystery. My opinion is that IGENX just figured out how to do it right and the other labs haven’t. I know for a fact that different approaches to raising antibodies against the same protein will give you different sensitivies, and I think they just did it right.

Tick expert to the scientist: It sounds like you are an expert here. Did you get from IGENX what the protein concentrations were?  Because you know as well as I do, that you can get more positivity the more protein you load into a gel. I’m just playing a devils advocate, because I don’t know, and I’m sure they wouldn’t tell you what their protein concentrations were. Before I jumped on the IGENX bandwagon, I’d like to know the concentration going into the gel and what is the source of that protein.

WBUR program host: I think here we are beginning to get into some of the controversy that has made this such a difficult issue. It’s time to wrap this up.