Posts Tagged ‘Lymenaide’

Lymenaide – And Then There Were None

// April 16th, 2012 // 5 Comments » // Ashley's Blog, Eric's Blog, LymeBites Blog

I’m writing this post just to clear up a lot of questions and concerns and other issues. As is obvious I’ve been too sick for a long time to do anything. In that same time period the organiation Lymenaide which I worked with and was a part of helping to do make Paint May Lyme Green a reality, has become extinct. There is a better word for it…maybe retired?

Lymenaide Final Post is where you can go to read what Ashley has said about her time working with the Lyme community and her plans to move on. It was on honor to work with a great team of people who were very creative, passionate and committed. I hope Ashley finds all she’s looking for and has a wonderful, healthy life ahead of her.

I however am NOT better. I wish I was!!! But I am not. But I’m getting to the point where I can start to be active again. I’ve been under attack with so many emails and questions about Lymenaide going away and what that means for LymeBites and my involvement in the Lyme community. It means nothing.

Lymenaide was a wonderful organization that served it’s purpose and did a lot of good, and interested enough people to “take over” where Lymenaide began. The PSA’s were a major accomplishment, with help from many in getting the celebrities to do the PSA’s to Ashley’s work with her brother in actually filming them. Then the hundreds of volunteers who helped get them to the many TV stations. It was a success. And it was meant for it was meant for, served that purpose, and now that that has happened it is “retired”.

So best of luck to Ashley, as well as Nani and Candice in their endeavors. But I want to let people know that Lymenaide ending does not mean that all 4 of us in the organization are all ending what we have. LymeBites and Lymenaide often crossed over, but the purpose of LymeBites was always different than the purpose of Lymenaide. So the changes do not effect my involvement in Lyme disease awareness, my responsibility to it because I have a voice that can help others, or my commitment to make a difference.

So nothing bad happened. If you read Ashley’s post you’ll see she is very happy and finding her new life. That is wonderful and I hope she finds every happiness in the world. But in the meantime, I am not going anywhere, LymeBites is not going anywhere, and we are about to unveil a new and improved website as well as some great projects that are being worked on as we speak. (Well as soon as I finish this post.)

But with the way people speculate I was hearing horror stories of fights and problems…as if Lymenaide was like Fleetwood Mac without all the cocaine. Nothing like that at all. Just that we served our time and purpose together and that was meant to be, and now we all move forward with what is in store for us next.

I just wanted to put a little post out there to let people know that so they don’t think there was any form of negativity involved in any of the changes, and to let you know while I’ve been silent for a long time, I’ve been fighting like hell for my life and my sanity, so that I could get back to doing what I do best. Run around in circles and hope once in a while I do something right.

Health, happiness and peace to everyone.
Eric

Lymenaide Holiday Bazaar!!!!

// September 21st, 2010 // No Comments » // LymeBites Blog, Lymenaide Awareness Campaign, www.lymenaide.com

Very exciting news from Team Lymenaide today as we announce our upcoming virtual Holiday Bazaar!!

Check out Lymenaide now to read all about the Lymenaide Holiday Bazaar!!!

Full Moon Flare Up?

// June 25th, 2010 // 3 Comments » // LymeBites Blog, Re-Posts

Ashley, Candice, Nani and I were having a pow-wow this evening and discussing how things were going this week when the question was asked, did we think we were gearing up for a flare up with the full moon approaching this Saturday night.  I personally believe this does in fact happen.  I had heard it a lot in the beginning of my illness, but never paid it much attention until I started keeping track a few months ago and realized I did in fact start to feel worse as the full moon approached, with the day of the full moon being the worst. 

Luckily, our resident Lyme writer (and Lyme fighter) Ashley had written about this last year so we are reposting what she had written.  The original post can be accessed here.  Please read her article and comment on your ideas on the subject.

Lyme Flares (Originally posted October 21, 2009) by Ashley van Tol

The past month has been a pretty rough on me. I had been on a new protocol for about two weeks with no dramatic changes to my symptoms. Then, suddenly, they worsened significantly. It all started around the time of the last full moon. That got me thinking. Do lyme symptoms flare with the moon cycle? I have heard that they do, but never paid enough attention to notice the trend in myself.

A friend also mentioned having read that lyme symptoms tend to be worse in April/May and September/October. This has certainly been true for me the last few years. Is it true for all of us? Or is it only experienced by those of us who live in climates with more extreme seasonal changes?

Maybe it was a coincidence. Maybe it was celestial timing. Maybe it was my lyme’s reproduction cycle. I don’t know. What I do know is that I was not the only Lymie experiencing a worsening of symptoms during this time.

What are your thoughts? Are you effected by the waxing and waning of the moon? Does the change of the season hit you hard? If you reflect back, is there a trend in which months your symptoms have been the worst over the years? Does the anniversary of your initial infection spur your symptoms?

 

More on the full moon and Lyme More on the full moon and Lyme 

United We Conquer!

// June 21st, 2010 // 4 Comments » // Family of Lyme, Lymenaide Awareness Campaign

hands together

.

United we stand, divided…
we don’t get nearly as much done.

.

You may have noticed that Lymenaide has taken on a distinctly awareness oriented feel. You might be wondering what happened and why there are so many less personal and informative posts than there use to be. Or, you’ve already put two and two together.

Lymenaide is evolving. When I started the Paint May Lyme Green campaign I had no idea where it would lead. Turns out, I’m pretty good at this awareness stuff. I want to continue to fight for Lyme disease awareness.

So do some of my closest friends. We all met online and we all have our own blogs. We also all have the same goals. We believe that as a team we can accomplish much more than we could individually. We have decided to officially join forces.

Lymenaide is becoming “the organization”, an awareness agency dedicated to helping non-profits spread awareness about Lyme disease and other causes. LymeBites is going to be Lymenaide’s official blog (this is where you will find us posting the personal and informative articles that made Lymenaide so popular). Victorious Vixen is going to be heading up our craftivism endeavors.

Think of it as one organization with different departments. That hopefully explains what we are. Now on to who we are.

Ashley van Tol- That’s me! I started Lymenaide about three months into my Lyme treatment. I was a friggin mess at the time. I couldn’t think straight, had a hard time speaking and I was so sensitive to everything sensory my doctor pretty much told me not to leave the house. To top it all off I was completely and utterly lost and confused about what exactly Lyme disease and everything that went along with it was, and what that meant to me and my life.

Nearly a year later I feel almost back to normal. Another reason for there being less posts on Lymenaide and the reason I was able to accomplished so much for Paint May Lyme Green.

From this point on I am going to focus on the awareness projects and fundraising we are planning through Lymenaide. I’m also going to be doing a lot of sewing for our craftivism projects. If you haven’t noticed yet, I love projects! I was the kid at school you always wanted to get stuck with on group projects because it was going to get done and your were going to get an A. I also kicked *ss in home ec. I once got in trouble for sewing too fast.

I will continue blogging as well, mostly about awareness but not exclusively.

Eric Rutulante- I was diagnosed with Lyme disease in June of 2009 after 20 or so years of unexplained illnesses and problems. I began LymeBites in December of that same year, which was about the time the disease began to let go of some of the grip it had on my brain which made it impossible for me to write. LymeBites began to evolve early on, as I met Ashley and began to write for her website along with my own. It was then she had this idea and a vision for the very successful ‘Paint May Lyme Green Campaign’.

I was angry that I had been allowed to get so sick when I grew up in an area that is endemic for Lyme disease. Lyme awareness made the most sense for me to direct my anger towards. I felt of myself as a lost case as far as saving from Lyme disease, but I decided I would be damned if I was going to allow people to go through the living hell that Lyme disease is. If I couldn’t stop my own disease from happening, I could stop others.

The biggest thrill for me in this when we hear of specific examples of people who were prompted by our campaign to get tested for Lyme, only to find out they had it. Through the campaign, and LymeBites I got to work with and get to know Nani and Candice. It’s an honor to work with, and be part of a team of such inspired, motivated and brilliant people. We are committed to save lives through awareness.

Nani Luculescu- Nani may not have Lyme herself but she is an honorary Lymie to us. Her dad has Lyme disease and Nani has become an activist for our cause. She help create some great Lyme facebook groups and she was there helping out with the filming of the PSAs and interviews this May.

Nani is heading up our craftivism department. Through her art and sewing Nani has been promoting Lyme awareness through her projects like Project Lyme Art Quilt. We have lots of plans for the craftivism department! Exciting stuff that you can become involved with. One of the most important goals for this is to raise money for our cause and for the crafter.

Nani will also continue with her efforts contacting politicians and encouraging others to do the same. This is an important piece, as you all know, to our Lyme puzzle.

If you don’t know Nani’s blog, get to know it- Victorious Vixen

Candice Mitchell- I was diagnosed with Late Stage Lyme Disease at age 19, after more than 3 years of suffering mysterious symptoms. By the time I was diagnosed, I was in pretty bad shape, and had to drop out of college at U.C. Davis and move back home with my parents. Upon diagnosis, I assumed that I’d begin to gradually get better, but unfortunately I progressively got worse. Two years after diagnosis, I found myself completely debilitated and completely confined to the house by Lyme, Multiple Chemical Sensitivity and Dysautonomia.

I’m 21 years old now, and have been through the wringer, but over these past couple of months I’ve begun to make improvements for the very first time, and have a new found sense of hope and optimism. Just this past May, I woke up one morning and to my very surprise, found that I could write again. Inspired by Lymenaide and Ashley’s “Paint May Lyme Green” campaign, I started my blog Infectiously Optimistic and began writing for awareness and understanding. I set a goal for myself to touch as many people as I could from my spot on the couch, and to not only educate the community but provide other Lyme patients with much needed hope.

By the time May had ended, I had found myself knee deep in awareness projects, and absolutely loved every minute of it. I was presented with the opportunity to join the Lymenaide team, and didn’t hesitate for a second before accepting. I’m honored to be a part of the team, and can’t wait to see Lymenaide’s bright future pan out.

Others- We aren’t alone in out efforts. We are supported and helped by many people in the Lyme community. The more the merrier we say! If you would like to know what you can do to help us, or you have ideas, send us a message.

Ashley
Awareness/Fundraising
ashvantol@lymenaide.com

Candice
Celebrity/TV Contacts (you can give them, not get them)
cmitch0320@yahoo.com

Eric
General Enquiries/Blog Topic Requests
LymeBitesDotCom@yahoo.com

Nani
Craftivism/Activism
nani@VictoriousVixen.com


Grass Root Support Surprises the ‘Twit’ Right Out Of Us, Thank You For Such A Wonderful Surprise!

// June 10th, 2010 // 2 Comments » // Lyme PSA, LymeBites Blog, Lymenaide Awareness Campaign

twit pic To begin, let me tell you a bit about Twitter.  According to Wikipedia – Twitter, “is a social networking and microblogging service that enables its users to send and read messages known as tweets. Tweets are text-based posts of up to 140 characters displayed on the author’s profile page and delivered to the author’s subscribers who are known as followers.”

Okay, what does that have to do with anything?  Ashley and I have spoken at great length in our awareness campaigns as to the importance of social networking and media sites in getting our message out.  Look at May.  The simple idea of a campaign for Lyme awareness literally blew up across the country and hundreds then thousands of people joined in.  Do you know how many people became aware in May?  Do you know how many lives were saved because of that awareness?  A great deal of credit has to go to Facebook, Twitter and the other social media outlets for their help in helping us spread our message.

Yesterday we received quite a surprise from Chloe, or in Twitter terms @TVD_Chloe, as she agreed to donate $.05 for each new follower following her on Twitter.  Wow…we were quite taken aback, but not surprised because of the amazing support the fans of The Vampire Diaries have given us since the stars of the show helped out with the PSA’s.

Then suddenly today I saw the following tweet (that’s what they’re called for you non-Twitterers):  @luckytobesilver is donating $.10 to the campaign for every new Twitter follower she gets.

Ashley and I set about to telling people, as we were getting messages on Facebook as people were adding these people on Twitter (and raising money for our awareness campaign at the same time), we suddenly saw another Tweet pop up!  @Christi_Roberts joined forces and is offering $.05 for every new follower.

Ashley and I can’t help but be astounded at this additional boost of support.  It is a huge help to the campaign, and to what we are trying to accomplish.

But then suddenly, I couldn’t leave my computer to go to the bathroom without more people joining onto the cause!!!  People were joining in so quickly (and Twitter kept crashing today, AKA the epis whale fail, also in Twitter lingo) Ashley and I couldn’t even keep up with sharing the information with each other, let alone to keep retweeting it and sharing on Facebook.  It was wonderfl!  But to make this easier, I am simply going to list out all of the following people who are participating in this fundraising project for the Lymenaide and LymeBites awareness projects we are planning.  As this expanded it now includes Twitter and Facebook and regular websites.

Less than half of these people have Lyme.  The others became friends to the Lymenaide/LymeBites awareness cause through the Public Service Announcements that we did as part of Paint May Lyme Green.  Through their new understanding of this terrible disease, they have been prompted to action.

Twitter
@TVD_Chloe is donating $0.05 for every new follower on Twitter from 06/08-06/15
@Christi_Roberts is donating $.05 for every new follower on Twitter from 06/09-06/15
@luckytobesilver is donating $.10 for every new follower on Twitter from 06/08-06/28
@icarusalsoflew is donating $.50 for every new follower on Twitter from 06/09-08/04
@Shannahg22i s donating $.05 for every new follower on Twitter from 06/09-06/20
@CAccolaWeb donated $20.00 today, which was for her donated $.40 for the first 45 people to follow her on Twitter
@lailakhangi is donating .20 euro for every new follower on Twitter from 06/09-06/30 (she is also donating .20 euro to Gulfaide)
@thelymegarden will donate $.06 for every new Twitter follower fro 06/09 until they receive 60 followers (the donation will be split between Lymenaide and CanLyme)

Blogs
Alyssa’s Blog – http://simplyalyssadreaming.blogspot.com -  for every person that subscribes to her blog from 06/09-06/16 she will donate $.05  June 9 and June 16 she will donate .05 cents to the Lymenaide campaign!!

Facebook
The Lyme Garden – Facebook Page will donate $.06 for every new follower of their Facebook page for the first 120 fans (The donation will be split between Lymenaide and CanLyme)
Craig Bancoff – Facebook Page will donate $.50  between 06/10 and 06/17 for every new follower of his Facebook page or new member of his website, you can Register Here for Craig Bancoff\’s Website.  Now in addition, for those who do not know ,Craig “is a musician suffering from chronic, neurologic, late stage Lyme disease and would like to show our support by helping raise money for Lymenaide.”  So beyond the amount he will donate for new followers, but for the same dates if you purchase the digital download of his CD he will donate $5.00 to the campaign!  If you purchase the CD from iTunes or CDBaby he will donate $3.00 for each purchase of the CD.  To get the digital download go here: Craig Bancoff – Merchandise.

And as a show of good sport, I will donate $.10 to the Lymenaide/LymeBites campaign  for the first 200 people to register with the LymeBites website.  Click Here To Register With The LymeBites Website

This is where you come in.  Are you on Twitter yet?  If not, please join and create at Twitter account at www.twitter.com.  Then go into search and enter all of the names above on Twitter and follow them.  Just by doing that you will have raise a lot of needed money for our campaign.  I actually figured out that if you did each of the things listed above you would raise about $7.00 for Lymenaide and LymeBites awareness campaign.  If we get just 500 of our collective followers and readers to actually do all of that, we could raise $3,500 for the awareness campaign without even having so spend a cent!  What could be better than raising money for a worthy cause without spending money?  It just takes a few minutes of your time, and we really need the additional funding to be able to complete our upcoming projects.

If you are already on Twitter then please add the people listed above also.

If you are on Facebook, please go and add the Facebook people for them to donate to the campaign.  And I highly suggest everyone register with Craig Bancoff’s website to also help us out, and while you’re there check out his music…purchase the CD and we will raise even more funds!  In addition please fan our Lymenaide Facebook Page, our LymeBites Facebook Page, our Victorious Vixen website run by our partner in Lyme Nani, and Candice’s Infectiously Optimistic Blog.  All 4 of us can be followed on Twitter and Facebook also.

And to all of these fans of the campaign, as well as those with Lyme who have gotten involved, we thank you so much for your support of this cause, your help in raising awareness and understanding, as well your assistance in raising the much needed funds to continue with our awareness campaigns and save lives.

If you’d like to make a contribution directly to our campaign through a different form of payment, there is a ‘Chip-In’ section in the top right of the LymeBites homepage, you can make a secure donation via PayPal or credit card there.  For other ways to make contributions via checks*, etc., or about sponsoring our awareness projects as well as questions about our campaign please contact Ashley at ashvantol@lymenaide.com or myself at LymeBitesDotCom@yahoo.com for more information.

Together we can continue to build the strength and momentum of our awareness campaign as we prevent another generation of illness.  We can’t let that happen, please help us prevent it!!

P.S. Please check out the montage of all the PSA’s we did that was put together by Chloe to the right of the post.

*Donations made by check to Lymenaide are not subject to any service fees. All other donation avenues; PayPal, Chip-In, Causes have services fees of between 3% – 12%. That money is taken away from your donation and goes to the payment service, and credit card fees. Checks can be made out to Lymenaide and mailed to: Lymenaide – PO BOX 290 -  Tahoe City, CA 96145. Direct payments to Lymenaide are not tax-deductible. The only way to make a tax-deductible donation is through the Lymenaide Awareness Causes Page on facebook sponsored by PANDORA.