Archive for May is Lyme Disease Awareness Month

May Is Ending, Where Do We Go From Here?

// May 31st, 2010 // 6 Comments » // Lyme Media, Lymenaide Awareness Campaign, May is Lyme Disease Awareness Month, Paint May Lyme Green, www.lymenaide.com

Greetings and Salutations this final day of May 2010, or as I like to think of it, 31 days of thousands of people from all over the world ‘Painting May Lyme Green’.  I felt it was important to write a follow up to the Paint May Lyme Green Campaign from my point of view, as someone who was very involved in the campaign from it’s early stages, and who put a lot of time and effort into it along with countless others here on the New York team.  This campaign was not my idea, it was not my doing.  The credit remains with my partner in Lyme, Ashley van Tol.  But soon after she began her vision of an awareness campaign, she let me know about it and asked if I would take part.  How could I say no, as I was laying there suffering, 10 months into my own less than pleasant journey with Lyme disease, when more than anything I wished someone had given me the information I would have needed to avoid getting that sick.  At the same time Ashley was beginning to gather some of the greatest minds in the Lyme disease community, and from there her vision for Paint May Lyme Green became a reality.  

The month is over now, and I hope you’ve been following us on all our journey’s of the past month, as well as in sharing the success of so many people all over the world as they too painted May Lyme green.  But now that it’s over, I know people are wondering what the outcome of this month has been.  Ashley and I are both working on some specific examples, as well a general overview of what we consider the success of this past month’s campaign and a way to showcase all of the hard work that everyone put into it.  We’ll be posting that in the next couple of days.

First I have to say that the campaign has been a huge success.  For those who don’t know, Ashley received quite a bit of opposition to this campaign in the beginning.  As more people got involved, they too began to face some opposition, including some of us here in New York.  The great thing is that we just had a simple message to share, to Learn About Lyme!!!  That’s it…learn about it, so you can protect yourself from it, and not get as sick as the thousands of us trying to spread awareness right now.  We are here to simply spread awareness, and it’s hard to stop something with so much support and so many people willing to help stop others from getting as sick as we are.  What a heart warming realization it became for us as the month progressed to see how much people were reaching out to others in so many ways.  Like I said there is an article coming up with more info as to the success of the campaign, but first I just want to talk about some things as the month comes to an end. 

The Paint May Lyme Green campaign is yes, ending.  Because May has to come to an end.  But the awareness campaign is not ending.  Beginning now we are transitioning to the ’Lymenaide Awareness Campaign’.  Ashley and I have both committed to finding a way to make this a year long thing, not just for Lyme disease awareness month. 

So maybe some things haven’t happened yet that you had hoped would take place in the month of May, have no fear…there is still lots of time for us to spread awareness.  Ashley and I are working hard on some thoughts and ideas as we move forward, as well as using the momentum for the things already set in motion. 

This is important because recently we were discussing the Lyme disease awareness month and we came to the conclusion that what has happened is that we have become a snowball, slowly gaining speed, numbers and strength.  So have no fear, this amazing month of Painting May Lyme Green has just propelled our growing snowball into the rest of the year, for a campaign that will help so many. 

On a daily basis I am hearing from people who have stories about how our work this month has effected them or their loved ones.  I can’t tell you how many people have gone on to get diagnoses of Lyme disease because of the information we have been sharing with them.  I know people are more aware of the horrors of this disease, parents who have followed us and heard us are worried for their children, so they will be more attentive to looking for ticks.  We are literally saving lives here.  Do you realize the impact of that?  Saving lives…it’s not every day you get the opportunity to do that (unless you’re a Dr, a cop, a firefighter, an EMS worker etc.).  Really sit and think about that, you have been a part of saving lives.  Amazing!

I am thrilled and honored to officially partner with Ashley in this endeavor, all of you know she is an amazing support to our cause, and asset to our community.  For those who don’t know her or her website, please check her out at Ashley\’s Lymenaide Website.

So get ready, because we are just getting started.  Think of what we did with less than 3 months to plan, and hardly any budget, relying on the generosity of those who are sick and their families to donate funds to get the campaign started.  It’s a pretty powerful way to get started I must say. 

I hate having to be sick, but I can’t think of a better time in the history of Lyme to be sick because we are becoming a powerful force with one simple goal – helping others to Learn About Lyme.  That is how we spead awareness of this disease. 

Congrats to all who have worked so hard this month…and for those of us suffering with Lyme sometimes just dedicating an hour of energy to something is hard work, and it means a lot to us that everyone was willing to rise above being sick to make sure word got out.  And we invite you to continue to help us to spread the word that Lyme diseae is real, it’s here, it’s everywhere, and it’s after each of us…and it is going to try to completely destroy each of us.  We can’t let that happen.  Together, we won’t. 

Cheers to all for such an outpouring of hard work and dedication this Paint May Lyme Green month.  And a very special thank you to Ashley van Tol of Lymenaide, without whom none of this would have happened…it was her vision that was turned into a reality. 

Health and happiness to all.

(Originally Ashley and I were working on writing something together to end out this amazing month of Lyme disease awareness.  However, as we were working on things we realized we had two different stories to tell, and therefore decided to each write our own post to wrap up the Paint May Lyme Green month.  If you have not yet read her end of May post, please go there now at http://lymenaide.com and read her thoughts on this month’s campaign.  In addition, another of our team members and huge contributors to the campaign, Alyssa Knapp (of http://foodforlyme.blogspot.com), also has written her thoughts on this month as it comes to a close.  She is now a guest author on LymeBites and you will be able to read what she has to say later today.)

Opinion: Lyme Disease Is a Terrifying Health Epidemic That’s Going Largely Unnoticed – AOL News

// May 28th, 2010 // No Comments » // Lyme Media, LymeBites Blog, May is Lyme Disease Awareness Month

This is a great article I saw today on Lyme disease…it is an epidemic, and we need to be vigilant…that’s why we are all out there every day telling people, nobody should have to endure the agony this disease causes. 

Opinion: Lyme Disease Is a Terrifying Health Epidemic That’s Going Largely Unnoticed – AOL News.

Under Our Skin Screening with Dr. Steven Bock – Lyme Expert, May 19

// May 14th, 2010 // 1 Comment » // LymeBites Blog, May is Lyme Disease Awareness Month, Paint May Lyme Green, Under Our Skin

(Reposting this, originally posted on April 19th…less than a week until this public free screening of the Lyme documentary with Q&A with Lyme expert Dr. Steven Bock. Please tell people in the area and help get the word out to save a life this Lyme Disease Awareness Month!)

On Wednesday May 19th, 2010 at 6pm there will be a public viewing of the film ‘Under Our Skin’ held at the Church of Jesus Christ of Latter Day Saints on Fording Place Road in Lake Katrine NY. Map for LDS church in Lake Katrine

For those who haven’t heard of this film, you can see the trailer here: Extended Trailer for Under Our Skin and Under Our Skin Theatrical Trailer

Immediately after the viewing Dr. Steven Bock of the Rhinebeck Health Center will be speaking and answering questions. Dr. Steven Bock Bio

For more information contact Gloria Rutulante at gloriarut@aol.com or LymeBites at LymeBitesDotCom@yahoo.com.

(Original Post For This Screening: Click Here)

One Year Sick…Now What?

// May 10th, 2010 // 1 Comment » // LymeBites Blog, May is Lyme Disease Awareness Month, Paint May Lyme Green

Hello everyone, and welcome to my first official post of my second official year of being debilitated by Lyme disease.  Some people reading this may be people who I don’t talk to regularly, or that aren’t aware of the details of my journey with this disease.  I’m sure there are people who think “is he STILL out of work?”  “Why isn’t he better yet?” 

Believe me…I think the same questions, usually on a daily basis.  But for whatever reason, my journey with Lyme disease continues.  It was one year ago last week that I woke up sick, and I’ve been sick ever since.  I was diagnosed with Lyme disease in June of last year, and then in October when I finally saw an LLMD (Lyme Literate Medical Doctor) I was diagnosed with Chronic Lyme Disease, as well as the co-infections Babesia and Bartonella. 

When initially diagnosed I was given 21 days of medicine and told I would feel better in a few days.  But I didn’t feel better in a few days, I felt worse.  I thought I was going to die to be more specific.  My friends began to scramble for who got which DVD’s and CD’s as I told them I was sure I was going to die. 

But I didn’t.  I was told there was nothing else that could be done when I was not better in 3 weeks.  I knew that could not be right.  That is the day I had to become my own advocate for my health as far as Lyme disease was concerned.  I had to do a lot of research, and was shocked and horrified at what I learned.  A broken system that had somehow allowed a disease to run rampant, without proper testing, diagnosis or treatment. 

I’m an intelligent person, though at times Lyme disease robs my mind from me.  But I can distinguish logic from nonsense, and that’s how I began the journey to fight a broken system, and a broken body. 

I began with a Lyme specialist last October, and have been with him ever since.  None of this is covered by health insurance, so I lost my home in Albany and had to move in with family while I began IV antibiotic treatment to fight this disease which had taken over my body.  I had my appointment with him last week, ironically on the anniversary of the day I became sick, AKA my sickerversary. 

About 2 or 3 weeks ago I had a break in my nerve pain.  The one thing that just seemed to always be flaring, and at full force.  I would say at least the last 2 years I have had this constant nerve pain.  It of course became much worse over the year before my diagnosis due to a series of steroid injections into my back.  I was assured this would cure the arthritis that had settled into my back due to an old injury.  Nobody every considered the fact that Lyme disease was the culprit of years of back pain, not an old injury.  So by the time I became incapacitated by this disease last year the nerve pain was at an all time high, and each day it only seemed to get worse. 

I take a plethora of medications and supplements to fight this nerve pain.  Thanks to a team of dedicated and knowledgeable doctors I have been able to manage to live with the pain I had, at times reducing it, but never alleviating it.  Suddenly I no longer felt this pain.  It didn’t last all day, at times it was just a few hours, other times it was a while longer.  But in all my body has been through in the last year the nerve pain has been the one thing that has been my biggest obstacle.  Everything else I feel I can manage and find a way to live with, but the nerve pain was mind numbing. 

So I discussed this with my LLMD at my recent appointment.  In an attempt to not get my hopes up too high I haven’t been very vocal about this latest development.  I feel bad setting my friends and family up for disappointment when any improvement I may feel turns out to be temporary. 

But when at my appointment last week I was told the break in nerve pain was huge, I decided it’s safe to get excited about it now.  Because it does mean progress. 

And progress is what it all comes down to.  Right now current guidelines for treating Lyme disease state that 2-4 weeks of antibiotics will cure most cases of Lyme disease.  Anything you’re left with after that 2-4 week course of medicine is what you are left with for life, or else it’s purely psychological and just pain caused by daily living.  It doesn’t take a scientist, a doctor, or even someone with a triple digit IQ to figure out that doest not make sense.  In this day and time with all we can do with medicine and alternative healing, I refuse to accept being told this is not real, or that there’s nothing that can be done. 

I sit before you writing this as living proof that those guidelines are flawed.  They are not only flawed, they are causing thousands of lives to come to a screeching halt with misinformation about a disease you can fight.  365 days later I am so much better than I was.  I have such a long way to go, but the important part is I’m on the right path. 

One year ago I could barely walk, barely think, barely dress myself and get to work for a few hours a day.  My body was going downhill so rapidly I was in a panicked state at what was going on.  I slept every day after returning home from work, until I could no longer go to work at all.  I lost periods of time in my memory.  I don’t remember much of Christmas, or anything that happened around it.  The list goes on and on. 

Last week I did 2 radio interviews, attended a screening of Under Our Skin with Dr. Bock speaking, celebrated my birthday, spoke at a support group, made 2 trips to Albany and celebated Mother’s Day.  I won’t lie and say I wasn’t exhausted when the week was over, actually to the point of uncontrollable twitching and muscle pain.  But I rested and recovered and am back on the Lyme Disease Awareness horse (there really isn’t a horse involved, in case you’re about to call PETA).  A year ago I couldn’t have pulled off half of that.  I understand I can’t do that every week, because I would send myself right into relapse.  But my body is slowly learning how to work right again, after 20 or more years of it slowly declining while the Lyme bugs moved in and set up camp throughout every part of my body. 

Do not let anyone tell you about your health, it’s your health.  You have to be your own advocate, especially when faced with something like Lyme disease.  You need to be making the decisions about your care, and then find the appropriate professionals that can help you.  Nobody can tell you that you will never get better.  And they certainly can’t tell you Lyme disease is a simple cure.  There are thousands of us who are living proof of that.  While some catch the disease early and treat it appropriately and have no further problems, they are the exceptions, not the norm.  Our medical system has allowed us to think differently.  This is why Painting May Lyme Green is so important, because it is up to those of us who suffer so needlessly to get the word out about the truth behind this disease.  Everybody in my world has been affected by this disease, but more importantly none of them have been able to remain in ignorance about this disease either. 

So yes, I am getting better.  I will be back.  I may not be the same person I was a year ago, but I will be a better and improved version of him.  One that has reclaimed his life from Lyme disease.  While I know the struggles ahead are large and looming, I also know what I can pull off as an individual and am no longer afraid of the unknown.  I welcome it, and the oppoturnity to grow and become myself again as this disease is erradicated. 

Join me in celebrating one year of my treatment done and out of the way.  Join me in praying that the next year will bring even more healing.  Join me in standing up with the thousands of others this month as we Paint May Lyme Green, and tell our stories so the world can know the truth about Lyme disease.

PSA’s

// May 8th, 2010 // No Comments » // Lyme PSA, LymeBites Blog, May is Lyme Disease Awareness Month, Paint May Lyme Green, www.lymenaide.com

Have you guys seen the PSA’s yet?  There are already quite a few up on the Lymenaide YouTube channel.  There are more being edited (probably as I type this) so subscribe to the channel so you know when we add  more to it.

And please send these out to your family and friends…it’s only 30 seconds, and can make the difference for someone in the future.  The more that know the fewer who will get sick.

Lymenaide YouTube Channel – PSA\’s