map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I've noticed the numbers of visitors on this site the last 3 weeks is very high?
As a support group in my state, we too are seeing a huge increase in contact from others with questions and concerns about lyme.
I believe people have spent a lot of time out in the fall beautiful weather, walking trails, raking leaves, enjoy nature before the winter sets in and they've been tick bitten.
They've heard enough and know enough to go web searching for answers to their questions. I'm glad the alarm has been sounded to them.
Now, may they be blessed enough to find a MD who properly ticks, any and every tick or vector borne bite, such as a spider bite.
They need the blood meal or the warmth to make it through winter and humans are life to them. Mice have already gotten in and made their home and they brought the ticks and the lyme bacteria in their system into your home.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Yes, trolls will always watch us. They are afraid we are getting smarter and smarter each year.
Watch out trolls! Your lies are being uncovered.
But increase in local activity, not trolls makes me wonder if we are reaching the masses with our screams for education and truth about lyme & co.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
How many visitors does this site have? Did you know only 424 Lyme sufferers added pictures to the 300,000 awareness campaign? How do we get the word out?
PLEASE message me if you need help sending in a picture.
“I am one of the 300,000 plus annual Lyme patients being ignored by the CDC and HMOs” ” I live in (state or province or country) “ “I’ve had Lyme for _____ years” OR ”It took _______ years to get diagnosed”
KEEP SIGNS SIMPLE. LOTS OF WORDS ARE HARD TO READ.
posted
You don't even have to take a picture for the 300,000 campaign. You can add words to a picture you already have. This is the picture I added of my daughter [hopefully the picture will show....I'm using the Instant UBB Code to add the URL].
posted
Joyuss, I think the awareness campaign has gotten broad distribution in the Lyme community. I just think it is a case of not all that many people agreeing that it will yield any kind of meaningful results. I think you will find that those who have been around Lyme for a while and know the politics better, tend to be skeptical of these efforts. Mostly, you end up preaching to the choir. Those without a stake in Lyme won't give it much attention. Everyone has to make their own decision as to whether they want to participate in this campaign. Just don't be surprised if the numbers fall short of expectations. And if that happens don't assume it is apathy in our community. It's not.
Posts: 57 | From CT | Registered: Jan 2005
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
The sign campaign post did not reach the masses until Nov 1st(original deadline). The reason for the deadline being extended until Dec 1.
Our local support meeting is the 3rd Thursday of each month. So Nov 21 I'll be clicking away with signs & members from KY/IN. www.kentuckyindianalymesupport.org
I know the other support groups around the country will be doing the same. The numbers will be much better on Dec 1st.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
Thanks for the reminder...I hope other will do the same.
If you don't want your photo out on the internet just leave it off.
I am one of 300,000 annual cases of Lyme Disease being ignored by the CDC & HMOs I live in _____________ Sick for ______ years
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Sent my picture in last week. It would help if everyone could.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I was working one week in Sept/Oct of 2001 and then not able to the next week.
I also was able to finally get my picture in.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
I'm so glad to hear more people are participating!!! Since awareness is still growing, maybe this hasn't been shared with many support groups, yet. I'm bringing signs and my cell phone to our next meeting Still, is there anything else we can do to get the word out? Do you think most people on here have seen it?
Ticktox, we can't give up! You never know whose attention this might get. I've been vocal about Lyme since my husband was diagnosed, over 10 years ago. He's still debilitated & I'm not going to give up the fight.
Aren't we all frequently explaining Lyme to people who are unaware? Just because what we've done in the past didn't get the results it deserved, doesn't mean we can give up, right?
I don't think it is apathy. I think most of us are V E R Y passionate about this subject!
Posts: 21 | From York, PA | Registered: Jul 2013
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posted
Joyuss,I am not at all suggesting we give up. I have spent a dozen years doing just the opposite and will continue the fight as should we all. But it is important that we do things that move us in the right direction. I, and others in the community, are not convinced this campaign does that.
Too often Lyme patients see these things through a narrow prism of a patient who has suffered with Lyme. They fail to think about how those without an understanding of Lyme, might perceive things.
Having people stand or sit holding a placard stating you are one of 300,000 portrays Lyme patients as victims, which we all know they are. But those that don't know Lyme and who are not so intimately familiar with the controversy, are likely to perceive things quite differently than is the intent.
I fear that this campaign could feed into the stereotype that the other side encourages. We know the courageous battle that Lyme patients fight every day. But don't expect the general public to get that from this campaign.
Furthermore, this controversy exists because of the IDSA & CDC. This campaign will have virtually no impact on either of those. Others can, and I know, do believe in this campaign and that's okay. Just don't expect too much from it.
Posts: 57 | From CT | Registered: Jan 2005
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
439 photo's now
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
I sent in. If people don't want to feel like they're playing the victim, just don't write the "ignored" part.
posted
droid, my point was not that the Lyme patients will feel like they are playing the victim. Rather, that the audience we are trying to reach may see Lyme patients as playing the victim.
We need to understand what messages we are conveying as seen through the non-Lyme person's eyes. We need to better understand public perception and try not to feed into those perceptions with our messages. Otherwise, these efforts only serve to widen the gap between reality and public perception. Preaching to the choir will not advance the cause.
Posts: 57 | From CT | Registered: Jan 2005
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
I don't know. To me, a victim is more someone who doesn't stand up for themselves. Doing nothing is far more damaging and exactly what the insurance/pharm/govt want.
300k people(prob more like 3 mill) and less than 500 pics. That's so disappointing.
If you don’t feel comfortably putting your face on the web-site, then just Email the cover letter.
Don’t forget, all the work put into this effort was for all of us, and all your family, friends, co-workers etc. that are suffering.
I hope you can find the time to help this cause! Thank you, Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I think it says.....we've had enough CDC, NIH and all the other lyme illiterate. You can no longer lie to the masses.
We will be do everything within our ability to speak, educate, share our truth and repeat again, show our faces as human beings, tell our stories and seek to help the millions that aren't aware about LYME DISEASE aka TBD.
It's not some illness they can attach labeled name to with unknown cause, but a super bacteria that can destroy your being and life.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Not quite at 500, yet Posts: 21 | From York, PA | Registered: Jul 2013
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I wondered what the count was. Thanks for posting.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Since awareness is still growing, maybe this hasn't been shared with many support groups, yet. I'm bringing signs and my cell phone to our next meeting ![[Wink]](wink.gif)
Still, is there anything else we can do to get the word out? Do you think most people on here have seen it?
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