Posts Tagged ‘Education’

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.

@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)

Alyssa’s Blog – -  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!!

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  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 or myself at 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.

ATTENTION New Yorkers!!

// April 21st, 2010 // 2 Comments » // LymeBites Blog, Paint May Lyme Green

What are YOU doing to paint May Lyme green?  As you are aware we are gearing up for Lyme disease awareness month, as well as our ‘Paint May Lyme Green’ awareness campaign. 

Right now I am working on an article about the NY team component of the Paint May Lyme Green campaign, with an update of what we’ve been working on as a group, as well as the work we’ve gotten involved in with many of you.  In addition, so many of you all are doing great things for Lyme awareness month, whether part of the ‘Paint May Lyme Green’ campaign or not. 

As part of my post I want to list some of the great things New Yorkers are doing to spread the word about Lyme diseade awareness, and what creative and interesting ideas people have come up with to gear up for the Paint May Lyme Green campaign, as well as spread Lyme disease awareness from a local to a national level. 

How are you helping out to get ready to Paint May Lyme Green? 

Either email me at or leave a comment with the details below for me, and I will include it in my article on what the NY team of Paint May Lyme Green is up to in gearing up for the Paint May Lyme Green awareness campaign. 

Please get any info in as soon as possible as this is set be published in the very near future. 

Thank you!

Q and A With Eric

// April 14th, 2010 // 4 Comments » // LymeBites Blog

I offered the opportunity tonight to have any Lyme-related (or sort of) questions tonight answered.  Please make a note this is our first offical Q&A session with me and I hope it will be the first of many. 

And to start off the questions, Alyssa from Rhinebeck, NY asks…well, she asks a more detailed question that I will translate into more general terms, how has Lyme affected my love life. 

Well Alyssa, it hasn’t affected it too much in that nothing has changed from before I was sick until now, meaning nothing!  There have however been several missed opportunities along the way.  Even when things start out the other person always seems so gung-ho to be so supportive of your disease and what it means for you to be sick, but in my experience so far when the first major hurdle comes along (or in some occasions just the first time you’re not well enough to keep plans) it usually tends to turn the other person away.  I’ve adopted a “no serious zone” for 50 feet around me until I am better, or at least functioning on a more “human” level.  By a no serious zone I mean that for now I don’t allow anything beyone just for fun.  Dating and going out to do this or that is great, and I think the socialization is key because of the isolation so many Lyme patients feel.  But it’s also unrealistic to imagine beginning anything serious when there are days it takes too much energy to send a text.  No matter how wonderful of a person may come along, it is just unreal (for me at least) to think about becoming serious, or even having the energy to get serious with anyone.  So for now, I take advantage of the opportunities I have when I do feel good enough to get out to do something, and whatever dating opportunities arise I make sure that is clear to the other person.   

I’ll let you know how that all works out as time progresses!  Thanks for the question.

Kristine of Kittery, ME asked how long have I had Lyme and what are my symptoms.  

I was diagonsed with Lyme in June of 2009.  I was later diagnosed in October of 2009 with the co-infections Babesia (a malaria like illness) and Bartonella (cat-scratch fever).  I’ve had it for at least 6 years before that, possibly for as many as 30 years.  I never saw a tick, or had the rash (as many of us don’t), so don’t know exactly when I was bit (I may have been bit several times for all I know).  But in reviewing my medical history it is clear that many problems throughout my life have been a result of Lyme disease.

As far as symptoms, that’s pretty hard to do.  I think a non-symptom list might be easier.  But here’s what I can remember of diagnoses and symptoms from 2003 until now:

Brain Fog
Irritable Bladder Syndrome
Blood and protein in urine
Seasonal Depression (SAD)
Irregular, but “healthy”, hearbreat
Chronic back pain and arthritis
Burning feet, especially the soles, travelling up my legs
Severe allergies
Ear/Sinus infections (several each year, getting more severe each year)
Pink Eye (several times)
Confusion when driving
Loss of vision in one eye
Deterioration of vision in both eyes
Ringing in ears
Tremors all over
Muscle twitching
Nerve pain, arms and legs
Joint pain, from head to toe’s
Muscle pain
Loss of use of left arm for a few weeks
Tingly feet and fingers, at times numb
“Phantom vibrations” throughout my body
Electric shock sensations
Shooting pains all over
Trembling hands
General limb weakness
3 teeth and part of the bone had to be removed from deterioration caused by Lyme
Legs giving out without warning
Patches of hair fell out
Weight loss and gain
Diarrhea and constipation
Painful urination
Eye floaters
Visual disturbances and corner eye hallucinations
Olifactory and adutitory hallucinations
Memory loss (whole days at times)
Rage and mood swings (see next question)
Air hunger, and trouble breathing
Hot flashes, night sweats
Daily fevers and chills for almost all 11 months now
Migraines and headaches

That’s what I can remember. 

Cheryl of  Madison, WI asks if I have problems with Lyme rage, Dr Jekyl/Mr Hyde behavior. 

ABSOLUTELY.  Especially the rage.  For quite a while before getting diagnosed I was surprised at how quickly I could get so very angry.  I chalked it up to lots of different things, but it was completely out of my control.  As is the Dr Jekyl/Mr Hyde behavior.  Mostly because of pain though.  I’ve noticed the pain really can cause the rage (understandably so, or even just the mood swings if not so much the rage).  It also causes complete changes in behavior, as does taking pain medication at times.  I remember at some point wondering if I was enjoying taking pain medication, or if it was that I was enjoying feeling lessened pain if even for just a few hours.  I realized that with less pain, more of the old Eric I miss so dearly would come out.  There are times my tolerance for the pain only lasts for so long, and then my personality can change.  And it times I can be a real pain in the you know who-ey when I do become angry and/or overwhelmed. 

I’ve found that I can’t predict my moods from one day to the next.  Most days it’s out of my control, no matter what I’ve learned to do to cope with it, or try and manage it, the disease has a mind of it’s own.  You can only learn to cope with having to cope with it.  It sounds dumb, but it’s the only way I’ve been able to manage it thus far.  And I have to let family and friends know that I can’t handle what I used to.  I get “overstimulated” very quickly, much like a cat.  And just like a cat, if it’s good or bad stimulation at some point I’m going to attack.  That’s exactly how I feel with Lyme.  There are times the slightest of conversations or discussions will be too much for me to handle, and I become irritable and upset when I begin to have trouble processing the conversation, or the emotions that begin to boil within me are too much to handle.  Luckily I have some pretty amazing family and friends who I can say “hey, I can’t talk about this now, you’re pushing me over the edge here” and they’ll laugh and wait until I can talk about it. 

Without understanding the full science behind it I can say that the Lyme bacteria can really do a number on our minds, in many ways.  Luckily I don’t often have “Lyme rage”, but I do have it…especially when driving, or when I begin to feel helpless to this disease, then it creeps out of me.  But I do have the quick and sudden mood changes, and sometimes almost violently (inside, not out) and there’s not much I’ve been able to do about that but learn to deal with it and manage it. 

I also take great supplemetns and medications which I think help keep calm, or not feel overly sensitive to stress, without having to take heavy sedatives or tranquilizers (though I highly recommend having them on hand for those sudden Lyme anxiety and panic attacks that creep up from time to time).  One of those supplements, L-theanine, has been by far the best of all the supplements I’ve taken this last year.

Thanks to you guys for your questions tonight, and I look forward to another session of Q&A with you all next week.  If you’ve already got questions you’re dying to ask me, start emailing them in to where some of the team will check them out and let me know which ones I should pick for the next Q&A session.

Also get ready for a “Lyme Advice Column” which will be debuting next week, called “Ask Anne”.  Stay tuned for more information and what kind of questions our advice column will be looking for. 

Peace and HEALTH to you all.

Greenwich CT – Educational Forum, “Lyme Disease–Your Body, Your Brain”

// April 9th, 2010 // No Comments » // Links To Other Lyme Site Posts

I just saw this posted on facebook, for anyone in or near the Greenwich, Connecticut area this looks like it would be a very informative event. Here’s the link for more details.

Greenwich Connecticut Lyme Disease Educational Forum