posted
Do you have your limes ready? Challenge begins March 1st! All funds raised go to support the International Lyme and Associated Disease Society (ILADS).
KarlaL
The “Take a Bite Out of Lyme Disease” Challenge kicks off March 1st, 2015. This challenge is both fun AND important. Ready to join in? Great! Grab a lime and get ready…
The Challenge The purpose of the Lyme Disease Challenge is to raise awareness and funding for improved Lyme Disease diagnosis and treatment.
Are you in? Great! Then follow the three easy steps below and donate $10 to ILADS. Prefer not to take the bite? That’s okay too! Donate $100 to ILADS instead. All donations accepted here.
1. TAKE A BITE: Bite a lime and TAKE A PHOTO OR A SHORT VIDEO of the act – the more sourpuss your face, the better (and funnier!).
2. SHARE A FACT: State ONE BRIEF FACT ABOUT LYME DISEASE, such as the facts provided below. You can say them in your video, write them on your photo, or include them in your post. Help us spread the true facts about Lyme Disease!
3. PASS IT ON: Keep the campaign going — CHALLENGE THREE OTHER PEOPLE – your friends, family, whomever! – to take a bite! Mention them in your video or if you do a photo tag them in your post.
Then! Very Important! Post it all to your favorite social media outlets. In your posts tag your video or photo with #LymeDiseaseChallenge so we can find you! You may even be featured here on our website!
Then check back to watch the challenge live! You may catch yourself in the live feed!
The Facts – Studies show that up to half of all patients with Lyme Disease received false negative results. This delayed diagnosis means they don’t receive needed treatment in a timely manner.
– Children are at the highest risk of contracting Lyme Disease and are more vulnerable to central nervous system infections.
– The CDC estimates that there are 300,000 new cases of Lyme Disease each year in the United States, 10 times more Americans than previously reported! Some experts believe the actual number of new cases could be as high as 1-2 million new cases per year in the US alone.
– Lyme Disease has been called “the great imitator” and can be mistaken for numerous diseases such as ALS, MS, Chronic Fatigue Syndrome, Fibromyalgia, Alzheimer’s, Parkinson’s Disease, autism and other difficult-to-diagnose multi-system illnesses.
– Lyme Disease is prevalent across the United States and throughout the world. Lyme disease has been found on every continent except Antarctica.
-------------------- KarlaL Posts: 694 | From New Lebanon, NY | Registered: Dec 2010
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Sent a note to the website suggesting that they overlooked LymeNet and MD Junction and the other patient forums as important resources for patients looking for LLMD's.
Also let them know that I was disappointed that there was virtually no mention of coinfections.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Tincup
Honored Contributor (10K+ posts)
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posted
I tried. Got a photo of a lime/lemon face and put it on all my websites to encourage people to take the challenge.
Then I tried to see what "facts" they had listed that you have to say in your video. The ones showing on the main page were made for an adult and are not fun at all.
For example, I can't get a young child to say...
– The CDC estimates that there are 300,000 new cases of Lyme Disease each year in the United States, 10 times more Americans than previously reported! Some experts believe the actual number of new cases could be as high as 1-2 million new cases per year in the US alone.
OR...
– Lyme Disease has been called “the great imitator” and can be mistaken for numerous diseases such as ALS, MS, Chronic Fatigue Syndrome, Fibromyalgia, Alzheimer’s, Parkinson’s Disease, autism and other difficult-to-diagnose multi-system illnesses.
BUT, to see the other choice of facts you have to sign up, log in, and/or register first! Can't they give the facts so you can prepare and donate without requiring your personal info first?
Tincup
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posted
I also do not see this challenge on any of the larger Lyme organizations websites, including ILADS where the money is going. You'd think they would promote it. I did not get an announcement about it either.
I have heard the organizers have worked hard on this project, which I appreciate. Just concerned about these few things.
kam
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posted
i was hoping to see some of the funnier ones on FB but looks like we need toto a live feed on a web site??
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
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I most likely will not have the health but had this idea of getting the two officers who pulled me over for drunk driving because some one called in and said they saw me coming from a bar in town drunker than a skunk...do the lyme challenge with me.
REality was, someone saw me on my feet coming for Bealle's outlet..I had gone in and out in 5 min as I know I can not be on my feet long.
I thought I was doing well on my feet. Power chair was broke. But, guessing I was not doing as well as I thought
Resulting in someone calling the police department on me.
So I could do the fact that not all people who are unsteady on their feet are drunk.
Side note: I do not drink. Even before lyme and company I have been thankful that I do not find pleasure in drinking.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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LisaK
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posted
Kam , that is just nuts!!! and funny but NOT.
crazy.
Tincup, that is strange it would not be super highlighted on the ILADS site
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
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posted
Tincup, it says on the site those are some facts you can use, but you can say any fact you want.
I am sure anyone could say anything. like "misdiagnosed lyme can put you in a wheelchair" "kids with lyme get sicker than adults with it" .....
the possabilities are endless.
I don't really like that it tells you in the challenge how much you have to donate.
some people don't have $10.
but on the link to give there is a spot to put in whatever you can give. why didn't they just say ""bite lime and make a donation"?
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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surprise
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posted
The Moms that put together this challenge are AMAZING (no, I am not one),
but I can tell you they have helped hundreds of SICK CHILDREN including their own, suffering with Lyme disease
they do tremendous service. This is their effort to do their best part again in a way they can manage to help more families suffering with Lyme disease.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Tincup
Honored Contributor (10K+ posts)
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LisaK- Yes, that is an option, thanks for the suggestion.
surprise- I've heard the same thing and know they've been working hard on this project. Bless their hearts for their dedication.
I just have to get some answers/ideas (like Lisa's suggestion) if possible before I send stuff out. I get lots of incoming mail back (and grief) when something doesn't appear 100% so I need to be solid on these projects before putting my name on them (by sending them out).
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Oh, and I want to get my little granddaughter to take the challenge. Since she was old enough to eat she's been eating lemons with no problem, in fact she likes them that way. Too funny!
To see others people's faces when she bites into a lemon is what I should film!!! They pucker up and make the awful face just watching her!
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
This 'Take a Bite' is getting an impressive participation!
Some really great pics!
I'm shy about pics, haven't done it yet...
Thanks again Tincup!
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Tincup
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posted
I "borrowed" the picture of Dr. J (CT) and put it on the site dedicated to him. If he can take a bite out of lime, and his kids can take a bite out of Lyme, so can you!
posted
The lymediseasechallenge.org site is really fun to look through!
Like...there's a cat whose owner says doesn't have interest in biting into a lime so here's the cat in its lime green tutu! And a parrot biting a lime, and even George Washington is biting into a lime in one of his pictures!
Hope people don't end up thinking you can get Lyme disease from limes! That's what someone once asked me about Lyme disease: isn't that what sailors get? - !
Posts: 13116 | From San Francisco | Registered: May 2006
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Tincup
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Worse yet Robin4927y5937..
I would call the Florida legislators when bills were in the works and multiple times I was immediately connected to the Florida Department of Agriculture when I said I wanted to speak to someone about Lyme disease.
Took me a while to figure out why, but finally I asked someone and they said they thought Lyme disease was something that affected "limes".
posted
Ha! Maybe we oughta warn agricultural depts about what's coming next!
Better yet, get them educated to say the right stuff to all the lime callers!
I can just hear it...
Reminds me of when I tried to reach CALDA the first time I heard about them. I called the number I found listed for CALDA and chatted for a little while about ticks.
Uh, the person finally said to me, they were with the California Legal Documents Association, but thanks for the Lyme talk anyway!
Posts: 13116 | From San Francisco | Registered: May 2006
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LisaK
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-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
I looked at the pics. It seems so lighthearted and funny for a disease that is not being taken seriously. I can just see the idiots saying "see we knew they weren't really sick".
Maybe I'm wrong, but the 300,000 photo thing showed the true story. This may go viral like the SLS challenge but will people take the disease seriously?
I just can't relate to the happy go lucky atmosphere when people are dying because no one is taking this disease serious.
Posts: 115 | From US | Registered: Sep 2014
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posted
A.G., I hear you about how serious this is, of course, but maybe some people aren't going to feel like "playing" with the topic or approaching it unless they are having some fun, and that goes for kids too.
So I think it's a nonconfrontive way of getting the word out that there's something to look at here, just like the ice bucket challenge for ALS that preceded this, is my thinking.
Posts: 13116 | From San Francisco | Registered: May 2006
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surprise
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Here is the website they created, in order to educate:
If you go to the website they created in order to educate, you will see examples of paragraphs like the ones I copied:
"The Lyme disease bacterium has the ability to enter the brain less than 24 hours after a tick bite. Lyme is called the “great imitator,” because it can mimic ailments such as Multiple Sclerosis (MS), Amyotrophic Lateral Sclerosis (ALS), fibromyalgia, lupus, chronic fatigue syndrome, Parkinson’s, Alzheimer’s, and autism.
Infection with Lyme disease bacteria alone can lead to early symptoms such as severe headaches, debilitating fatigue, joint pain, and skin rashes, while long-term symptoms can lead to problems related to the central nervous system, including the brain, as well as the heart, joints and other musculoskeletal problems.
Symptoms of Lyme disease vary for each individual patient, and also vary in intensity over the course of the disease."
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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surprise
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And this:
Diagnosis Did you know that the average patient sees 5 doctors over nearly 2 years before being diagnosed? Or that two-tier testing paradigm for Lyme Disease recommended by the Centers for Disease Control (CDC) misses approximately 1/2 of actual cases pursuant to numerous peer reviewed studies?
In early infection, CDC endorsed blood tests, which are based on a single Lyme strain from Shelter Island, NY, may not be detecting all the bacterial strains of the disease (there are at least 100 different strains in the United States). According to a Johns Hopkins study, the tests miss up to 70% of infected patients. Without a sufficiently sensitive and reliable test for Lyme Disease, it is impossible to determine with certainty who has an active infection versus past exposure.
Notwithstanding the unreliability of CDC approved tests, the CDC and FDA have recently taken steps to limit access to more sensitive testing, further compounding the problem. Tick-borne co-infections are also frequently missed using currently available laboratory tests further diminishing the chances of a successful treatment regimen.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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surprise
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and, THIS section is on the lymediseasechallenge.org
How Does Lyme Impact Children? Children ages 5-14 are at the greatest risk of acquiring Lyme Disease. Indeed, around 25% of all reported cases are children. According to research, children are bitten by ticks more frequently around the head and neck, making them more vulnerable to brain and central nervous system infections.
The resulting neurologic symptoms of Lyme disease are often misdiagnosed. Lyme Disease can also be transmitted to a child during pregnancy. Lyme pediatric specialist Charles Ray Jones, MD and other leading Lyme specialists have compiled a list of common symptoms of infection in young patients:
fatigue unrelieved by rest insomnia headaches mitochondrial dysfunction syncope, POTS or Neurally Mediated Hypotension nausea, abdominal pain seizure disorders impaired concentration poor short-term memory inability to sustain attention difficulty thinking and expressing thoughts difficulty reading and writing overwhelmed by schoolwork difficulty making decisions confusion outbursts and mood swings fevers/chills dizziness noise and light sensitivity increased incidence of ear and throat infections increased incidence of pneumonia irritability joint and body pain poor muscle tone gastroesophageal reflux small windpipe (tracheomalacia) cataracts and other eye problems developmental delays (language, motor) learning disabilities psychiatric problems (anxiety, depression, OCD) autism or Asperger’s type presentation
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Guess I'm wondering where the donation money goes? Education, research, etc...
Do they mention this? the $10 donation if you do, $100 if you don't seems a bit weird to me too, but that's just me.
I'd prefer the "donations of any amount you can contribute go towards" fund....
Honestly, some people may give $100 but would have donated more if encouraged to.
I haven't been able to work in a long time and the marketing person came alive for a moment. :-)
Posts: 867 | From PA | Registered: Jan 2006
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surprise
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C'mon now, making me work to stand up for the lyme moms!
Again, copied right from lymediseasechallenge.org :
"The easiest way to help the millions of people suffering from Lyme Disease and its related co-infections is to DONATE. Your donations go directly to where it is needed most – from training doctors on a global level, to helping find better diagnosis and treatment options. Your generous gift is vital to helping stop this prolific, debilitating, and often misdiagnosed disease.
The Lyme Community has selected the International Lyme and Associated Disease Society (ILADS) to receive all the proceeds of the campaign. Your donations will go to their non-profit foundation, International Lyme and Associated Diseases Educational Fund (ILADEF). ILADEF is a registered 501(c)(3) non-profit organization. Your contribution is tax deductible to the full extent allowed by law.
This selection, affirmed by popular vote, recognized ILADS as the worldwide leader in Lyme education and training for medical professionals.
ILADS promotes understanding of Lyme and associated diseases through research, education and policy. It strongly supports physicians, scientists, researchers and other healthcare professionals dedicated to advancing the standard of care for Lyme and associated diseases.
ILADS’s strategic goals are the following: 1. Improve understanding of Lyme Disease.
2. Review, develop and implement clinical research programs that enhance the management of Lyme and its associated diseases.
3. Advance the standards of care.
4. Review, develop and implement programs for physicians and other healthcare providers support – including materials, advice and education.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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quote:Originally posted by Robin123: A.G., I hear you about how serious this is, of course, but maybe some people aren't going to feel like "playing" with the topic or approaching it unless they are having some fun, and that goes for kids too.
So I think it's a nonconfrontive way of getting the word out that there's something to look at here, just like the ice bucket challenge for ALS that preceded this, is my thinking.
Your explanation makes sense, Robin.
Posts: 115 | From US | Registered: Sep 2014
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posted
Surprise, I admit I didn't link b/c it becomes too much reading for me. Was just curious, not questioning authenticity of the challenge.
Thanks for making that clear, sorry I made you work again on my behalf. :-)
Posts: 867 | From PA | Registered: Jan 2006
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surprise
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Just jokin' around, although sad I thought copy and paste was work, lol.
And I am glad I put it here, in case it helps anyone.
I, too, do not click into too many links. But this website and what these families have put together is quite excellent.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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surprise
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Have you seen THE CELEBRITIES that are participating?!
WILLIAM SHATNER, Tiki Barber, etc.!
Wow!
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Ann-Ohio
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AND Here is an excellent video on Fox News in Western Michigan. The text on the page has some good links, but you have to see the live action of people taking the Bite Out of Lyme challenge!
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
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