What Do You Do For Lyme Disease Awareness?

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Camp Other
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What Do You Do For Lyme Disease Awareness?

Post by Camp Other » Fri 9 May 2014 0:08

I'm just asking what anyone here does for Lyme disease awareness, and does anyone think it's good to always talk about the basics, re prevention, early symptoms, diagnosis, initial antibiotic treatment - or do advocates need to go further than that and explain more about late stage Lyme and its complications, how to recognize it might be a problem, and any controversies?

Basics are easier to put into sound bites - that much I learned. Summing up a controversy or series of debates is harder. I'm trying to come up with infographics which encompass issues in Lyme disease which are succinct and easily read.

So I guess it's a two part question: What do you do for awareness (blog, participate in walkathons, tweet, post tips on prevention in Facebook, etc) and how much and what kind of information do you share?

Cobwebby
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Re: What Do You Do For Lyme Disease Awareness?

Post by Cobwebby » Sun 11 May 2014 3:57

So glad you asked ! I wear a lime green tee shirt I made myself, thank you very much, that has a picture of a giant tick, say 3 inches, climbing out of my pocket which has written on it-'lyme disease is a big problem"
It's a conversation starter. Anybody asks- I tell them my experience.

Also, I share posts on Facebook I think are informative. Sometimes what I say needs a back up from a professional.

I also ease drop on people's conversation and when appropriate I suggest their ailment may be lyme disease. Just this year I couldn't help but encourage a co-worker to seek advice from a local doctor who specializes in lyme disease for her high school daughter whose symptoms were spot on for LD. This was in Novermber 2013. Of course , big sigh, she felt compelled to follow the mainstream. Poor child had every test known to a misdiagnosed LD patient as her symptoms worsened. Finally, FINALLY,in March 2014 they made an appointment with a pediatrician working with Dr. Singleton. Daughter is getting the proper treatment.

What continues to make me sad though is she thinks her daughter is a slacker. And I tell her Do NOT underestimate the effects of LD and treatment. This has been the only "success' though that I have had in getting a patient to the proper authorities.
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

Camp Other
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Re: What Do You Do For Lyme Disease Awareness?

Post by Camp Other » Tue 13 May 2014 21:53

Cobwebby wrote:So glad you asked ! I wear a lime green tee shirt I made myself, thank you very much, that has a picture of a giant tick, say 3 inches, climbing out of my pocket which has written on it-'lyme disease is a big problem"
It's a conversation starter. Anybody asks- I tell them my experience.
I imagine a 3" tick would get anyone's attention. Any images of this you can share?
Cobwebby wrote: Also, I share posts on Facebook I think are informative. Sometimes what I say needs a back up from a professional.
Nods.
Cobwebby wrote: I also ease drop on people's conversation and when appropriate I suggest their ailment may be lyme disease.
Nods. I think it's good to point out the possibility, but I'm also of the position that not everything is Lyme disease even if symptoms are similar. There's a balance to be struck, somehow, and I don't want to give everyone the impression I think everyone's ailment is really Lyme disease.

If someone shares with me the information they came down with symptoms recently and were outdoors a lot or had a tick bite, that makes it easier. I can open up the conversation to the possibility of coinfections, too.
Cobwebby wrote: Just this year I couldn't help but encourage a co-worker to seek advice from a local doctor who specializes in lyme disease for her high school daughter whose symptoms were spot on for LD. This was in Novermber 2013. Of course , big sigh, she felt compelled to follow the mainstream. Poor child had every test known to a misdiagnosed LD patient as her symptoms worsened. Finally, FINALLY,in March 2014 they made an appointment with a pediatrician working with Dr. Singleton. Daughter is getting the proper treatment.

What continues to make me sad though is she thinks her daughter is a slacker. And I tell her Do NOT underestimate the effects of LD and treatment. This has been the only "success' though that I have had in getting a patient to the proper authorities.
Nods.

It's hard watching people suffer, knowing they could get help and feel better. It's also hard to deal with labeling others' behavior and ascribing motives which aren't there - e.g. the person is told they're lazy when in reality they're sick.

Lyme disease is a bitch this way. Can feel like death warmed over or be completely cognitively messed up but look normal or even good to others. The subjective experience is so difficult and hard to put into words. This is why people say, "you don't "get it" until you get it when it comes to Lyme disease.

dlf
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Re: What Do You Do For Lyme Disease Awareness?

Post by dlf » Thu 15 May 2014 7:20

Two Lyme Awareness events in southern Ontario on the evening of Saturday May 17th. Both the CN Tower in downtown Toronto and the lights dancing over Niagara Falls will be lit up in green in support of Lyme Awareness Month. Rallies for awareness will be held in both areas. Anyone able to attend to help promote awareness or just connect with Lyme friends, please come join in.

Toronto, it's your time to shine! The CN Tower will be lit in green this Saturday, May 17th for Lyme Awareness.

A rally is being organized for 8 p.m. at the base of the tower. Wear green and bring posters -- green glow sticks if you can find them -- and be part of the Rally for Lyme Awareness in Toronto!

In Niagara Falls, we are asking those who can to meet at the bottom of Clifton Hills by the water fountain. It is a busy spot as that is where people purchase tickets for the tours/restaurants etc... especially on the long weekend! People will be gathering at dusk, wearing green and bringing posters. The group there will also have Lyme Ontario T-shirts for sale and will be handing out brochures.

If there are any lymeneteurope forum participants (or watchers) in southern Ontario able to join our efforts, please come out and add your support and voices to our contribution to the worldwide Lyme Awareness Campaign.

Also on May 17th there is an awareness event in Montreal.
https://www.facebook.com/events/1444199702489377/

Canlyme also has listings and links for other events that have already taken place earlier in May.
http://canlyme.com/2014/04/20/upcoming- ... ents-2014/


For the past three years I have also attended any Ontario Public Health Rounds events about Lyme or ticks which allowed public participation. This years "Tick Surveillance" topic will be held tomorrow. I will go and hope there will be time to ask at least a few very pointed (and leading) questions of the presenter to raise awareness among the other attendees and participants, (most of whom work in some public health capacity or are medical students).
These events usually garner fairly wide audiences through webinar technology, even though in person attendance is usually quite low. Last years topic was vector-borne disease and I went specifically to promote the concept of teaching Lyme disease information and protective measures in public school health curriculum across the province. I wanted to enlist the provincial public health organization to initiate and co-ordinate with the necessary teachers organizations and school boards to bring this to fruition. If nothing else, I did plant some seeds.

RitaA
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Re: What Do You Do For Lyme Disease Awareness?

Post by RitaA » Thu 15 May 2014 14:56

dlf,

Thanks for all you do in Canada, and especially in Ontario.

For anyone interested, it's still possible to register for today's webinair. I just did, and it took me under a minute:

http://www.eventbrite.com/e/pho-rounds- ... 1390181339
PHO Rounds: Epidemiology - Passive tick surveillance in Ontario: the burgeoning distribution of blacklegged ticks
Public Health Ontario
Thursday, May 15, 2014 from 12:00 PM to 1:00 PM (EDT)
Toronto, Canada

dlf
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Re: What Do You Do For Lyme Disease Awareness?

Post by dlf » Fri 16 May 2014 16:02

Rita A,

I really can't take credit for the many things that are being done either in Ontario or across Canada. Your thanks should go to the various people who are making these things happen. Many of these started as individual projects and in the above post I was just reporting and hoping to add to our ranks for May 17th. While I do as much as I am able, I feel in many respects inadequate to the tasks at hand. Lyme denial is a mountain and the obstacles to overcoming it sometimes seem overwhelming.

The PHO Rounds were interesting. This year they arranged the talk to leave very little time for questions. So, accordingly I didn't have an opportunity to do anything in the way of questions. There were also many more people in the room than in the past, which perhaps goes to show that awareness is increasing, but it was hard to characterize where some of them were coming from. It could be that they stacked the room with more PHO staffers. I think people who participated through the webinar had more opportunity to have questions answered because Robbin Lindsay was taking over answering some of those questions by typing the answers from a distance. The downside was most of those questions and responses didn't make it to the floor for everyone to hear. The power point slides had some interesting data, but won't be available until after they have published the article that they have submitted to a peer-review journal. Hopefully, when it comes out it won't be behind a paywall. It was difficult to analyze what they had put up in the slides when they zipped by so quickly. It was even more difficult to pick out what should have been included but wasn't. I guess I will just have to wait for the article to be released.

Since you participated in the Webinar, what did you think about it?

RitaA
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Re: What Do You Do For Lyme Disease Awareness?

Post by RitaA » Fri 16 May 2014 22:08

dlf,

You deserve credit for just spreading the word about Lyme disease events taking place in Canada -- something I did more of myself in the past. I think we all feel inadequate in the face of what still needs to be done in the way of prevention, diagnosis and the treatment of Lyme disease so others don't have to go through some of the same experiences we have.

The webinair consisted of looking at the presentation slides via internet and listening via a phone line. One thing I did do was copy most the questions and answers posted, although I probably missed a few:
jeanne pacey: will the power point be available for refference

PHO Meeting Host 2: Hi Jeanne, upon consent from the speaker, the slides will be posted here: http://www.publichealthontario.ca/en/Le ... _2014.aspx Thank you.

Martha Robinson, OPH: We are suprised that Ottawa/Eastern Ontario has such high levels of tick submission. Do you numbers include ticks that are submitted by vets on dogs? Do many physicans submit directly?

Robbin Lindsay: Some of the data would represent ticks from pets as the NML continues to take tick submissions from vets in much of eastern Ontario, though the Public Health lab stopped taking ticks from non-humans back in 2008 or 2009

Martha Robinson, OPH: Thanks Robbin

Jim Reffle - Elgin St Thomas PH: Would you expect there to have been any signiificant winterkill due to the duration of this past winter?

Robbin Lindsay: We dont have conclusive data to explore overwintering survivial rates among years but based on hisotrical controlled studies, there does not appear to be a large annual variation in overwintering survival.

Robbin Lindsay: Even here in Winnipeg where we had frost levels to atypical depths there does not appear to be an impact on local tick populations

BOZENA SHEARER: pesticides were banned in Ont a few years ago, what effect has this had on ticks in urban areas?

Robbin Lindsay: Likely little impact as most tick populations do not reside in habitats where pesticides are used and many of the products would not have a negative impact on tick (too bad, eh?)

Jim Reffle - Elgin St Thomas PH: You mentioned New Jersey as being a very active area for BLTs, but what about Michigan? Michigan is a popular area for residents in sw ontario for recreational activities...we sometimes get questions about how safe it is there when they go camping or hiking there.

David Black: The hotspots seem to be associated with stop off points on avian flyways, is there any research/info on what avian species may or may not be significant vectors?

Martha Robinson, OPH: a bit off topic but is there talk about a vaccine?

Ainslie Butler: Is there data about the rate of tick submission by vets in different regions? Do vets submit ticks to NLM across the regions, and if so, what proportion?

Robbin Lindsay: Sorry I will stop typing now!

Robbin Lindsay: Us tick guys just never know when to shut up

jeanne pacey: is active tick surveillance occuring in hamilton area specifically the conservations trails..?......

guest 3: Many times the public submits ticks to the HU they reside, but communication b/w HUs where the tick was aquired is lacking with notification of postive BLTs - notification protocol?

Lambton Public Health: Is there little risk or no risk to an unattached tick?
The last few questions weren't answered (at least not to my knowledge). Since there are so many questions (and obviously growing interest) related to Lyme disease, a one hour session seems inadequate. Perhaps PHO and other provincial health authorities will pick up on this and make an effort to schedule more events like this one.

I also found the pace rather fast, and therefore look forward to the information being published. One can only hope it isn't behind a paywall, and especially since it's taxpayer money in one form or another that funded the collection of this data and its presentation. Why all government-funded research (regardless of the country involved) isn't available to the general public free of charge is something I still don't understand.

For those folks like myself who won't be at Niagara Falls in person, here's a webcam link that I plan to use tomorrow night:

http://www.earthcam.com/canada/niagaraf ... afalls_str

Edited to add:

I have thanked other folks directly for their efforts in raising awareness about Lyme disease whenever possible.

dlf
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Re: What Do You Do For Lyme Disease Awareness?

Post by dlf » Sat 17 May 2014 5:56

RitaA

Many thanks. I do have an update on the gathering for Niagara Falls. It is unusual, but the Falls event will be sharing lighting with another group. So the Lyme Awareness lighting in green will be at 10:30 pm and again at 11:00 pm. The group will be gathering at the same place as reported, (the fountain) at 9:45pm instead of at dusk. So for those watching by webcam, it will be later than previously stated.

Toronto will be as planned at 8:00pm at the base of the CN Tower and we really want to encourage people to join in. There is a possibility that we will have a local tv news camera person coming to film, (of course, providing there is no breaking news story that would take precedence).

Thanks for copying the questions......they are a little frightening especially considering the sources. OPH is Ottawa Public Health Unit, Elgin St. Thomas Public Health is very close to Long Point and Lambton Public Health.....good grief, don't you read anything? And I really have to wonder where guest 3 was located!

RitaA
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Re: What Do You Do For Lyme Disease Awareness?

Post by RitaA » Tue 20 May 2014 8:51

You don't want to miss Camp Other's latest (and related) blog entry that I posted about in this thread:

http://www.lymeneteurope.org/forum/view ... f=7&t=5372
Monday, May 19, 2014

Op/Ed: Thoughts And Reflections On Worldwide Lyme Disease Awareness Protest

Camp Other
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Re: What Do You Do For Lyme Disease Awareness?

Post by Camp Other » Tue 20 May 2014 16:15

RitaA wrote:You don't want to miss Camp Other's latest (and related) blog entry that I posted about in this thread:

http://www.lymeneteurope.org/forum/view ... f=7&t=5372
Monday, May 19, 2014

Op/Ed: Thoughts And Reflections On Worldwide Lyme Disease Awareness Protest
RitaA, see you've been posting this all over - and I agree that this thread is probably the most appropriate one. :)

I'm glad you appreciate it!

I wanted to do something for the worldwide Lyme disease awareness protest weekend, and had to do it my way by blogging, I guess.

Maybe someday I'll get out there and participate in a Lyme walk or something similar. But in the meantime, I write.

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