Archive for May, 2010

Lyme Disease Has It’s Good Points Too

// May 31st, 2010 // 4 Comments » // Food For Lyme Blog, LymeBites Blog, Lymenaide Awareness Campaign, May is Lyme Disease Awareness Month

Most of you out there with Lyme disease, or who have heard me complain through the last year of my own Lyme disease are probably thinking “is he having a stroke, or did he really just say that?”  No, I am not having a stroke.  But I am having a stroke of genius.  Okay, not so much genius as at least an idea.

Alyssa Knapp of Food For Lyme wrote an amazing piece tonight on the end of Lyme Disease Awareness Month.  Part of what has been mentioned in the comments to that article is how many new friends we’ve made through this Lyme awareness campaign. 

As much as I hate my Lyme disease, I can’t imagine my life without some of the people that have entered it through the Lyme disease portal.  I never would have been able to meet so many people from all over the world, let alone half the people in my own neighborhood that I’ve met through this campaign. 

And let me tell you, there are some pretty damn amazing people that have worked hard on this campaign, and it is truly a blessing to know them, and to have worked with them.  But more than that, the hundreds and thousands of people who have joined us in spreading awareness.  Most I’ve never met in person, but I love them and depend on them as if they were friends for years.  Part of this disease is isolation.  You cannot begin to understand the isolation someone with Lyme disease feels.  Especially without the support of their own family and friends.  So to be able to come together as a group like this, and feel unending support and understanding of what we go through can be pretty powerful.

So yet another silver lining to the dark cloud that is Lyme disease.  The wonderful people who become part of the community that help to brighten our often dark journeys. 

Alyssa will be guest writing this weekend and including the post I referenced, so please be sure to come back and check it out.  It will bring a tear to your eye and pride to your heart at all that we’ve been able to and how we’ve grown as a community.

My Final Wish for May

// May 31st, 2010 // No Comments » // Food For Lyme Blog, LymeBites Blog, Paint May Lyme Green

As May comes to an end, so does the official end of Lyme Disease Awareness Month. I have seen some very powerful things happen this month. Three years ago I was wandering out in left field wondering if I were the only person in the world with this awful illness….feeling so alone. I have met so many amazing “Lymies” this month. Thanks to everyone’s efforts to change their FB profile pics…for once I could see who was there with me. It has been truly overwhelming. I feel as though I no longer walk alone and that I can stand a little taller. I am proud to be standing side by side with each and every single one of you. Such strong, powerful people you all are. Thank you for the gift of your presence in my life.

I have three final wishes for the end of May and I hope you can accommodate.

1. If you do not have Lyme….please I ask one last time….educate yourself. Learn about Lyme. I do not want you to walk in my shoes….for this is not a journey for the weak. Just take 20 or 30 minutes and go to some of the Lyme blogs, websites or various other sources so you can educate yourself and protect those you love.

2. If someone you know has Lyme and is suffering I ask that you take the time to remember them. It is so easy to get caught up in your life and forget those at home dealing with a chronic illness. A phone call goes a long way. It’s easy to please a Lymie….I bet your friend or loved one would appreciate a walk, an afternoon cup of tea….or if you want to help and don’t know how….ask. Sometimes something as simple as a home cooked meal or an offer to do the vacuuming can make a world of difference. Just knowing that someone still cares and remembers you can be the difference between a good day and a bad day.

3. Lastly….and this is not so much a wish but my own personal thoughts….but I dedicate these last few days of May to all of you suffering with Lyme. You deserve these days…you deserve this month. I want you to know you are not alone…that if even if you feel that way….I am here for you. I give you my hope, I pray for you and I truly believe you will get better and stronger. You do not suffer alone and no longer shall we suffer in silence.

Alyssa Knapp

www.foodforlyme.blogspot.com

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.)

My 11 1/2 Month Check-Up

// May 30th, 2010 // 2 Comments » // LymeBites Blog

So this new medicine I’m about to begin, I’ve learned two things about it so far from Google…and I’ve yet to learn anything else about it that I wanted to know. 

First, it almost seems like you need to have a vagina to take this medicine.  The only uses I can find for it, involve that particular body part.  I know I’m taking it for Lyme, but it hasn’t been easy to find anything on the internet about it with Lyme. 

The second thing is that it causes cancer.  It seems each antibiotic I take the side effects get worse and worse…but cancer I can deal with and fight later on if I need to, but if I don’t beat this Lyme my body would never be able to fight cancer, so it’s really a crap shoot. 

My thought on it all is that if I don’t get better, I won’t have a life to live…so the side effects may kill me, but at least I’ll have my life back to enjoy…I’d rather live a short life full of happiness than a long life full of pain.  (I think most people feel the same way, yet so many choose a life full of pain when they have the choice not to). 

So today was my follow up with the Dr, and I am now beginning medicine that’s referred to as a ”cyst buster”.  The Lyme bacteria can take on three different forms in the body, one of them is cysts.  These cysts act as a protection against the antibiotics, part of why the Lyme bacteria can be so hard to eradicate, and why we can be prone to relapse.  We’ve hit the point in my treatment where we feel that the bacteria are now in this cyst form, the majority of the die off seems to have come to a crawl lately.  This next step will then attack these cysts, hopefully breaking them up…and then at the same time I’ll be pumping my body full of strong IV antibiotics to kill the broken up cysts. 

Are you still with me or have I already put you to sleep?  WAKE UP!!!!  I’ll explain it a little better.  It basically means I can expect a crap storm of a war in my body over the next few weeks…as the cysts break up, bacteria will be released into my body (which can make me feel worse), and then the antibiotics kill the bacteria and will leave dead bacteria floating around in my body (which can also make me worse).  I assume you’re getting the idea here that I’m probably going to be feeling worse. 

Each step in this ugly journey of Lyme disease seems to begin with those famous words in the Lyme community:  You have to get worse before you get better.  But let me tell you my friends, that I am getting pretty sick of getting worse while trying to get better.  This will make the 7th antibiotic I’ve been on in the past 12 months…each one causing die off reactions (which we call Herx reactions).  My Lyme Dr recently described what a herx is very clearly.  If I have 10 pieces of bacteria floating in my body making me sick, and I take medicine that breaks it up…I then have 100 pieces of bacteria floating in my body, and until that bacteria leaves my body the extra load of bacteria makes you much sicker.  It’s very similar to a cancer patient with chemo, the treatment actually makes you sicker than the disease at times. 

But it’s a good thing, and gives me hope.  We continue to move in the right direction…I’m in the 6th day of an upswing in how I’ve been feeling, and I hope that means that my good days will continue to get better and better, and my bad days will be fewer and fewer.

Eric’s Story Featured On Novelist’s Lyme Blog

// May 29th, 2010 // No Comments » // Links To Other Lyme Site Posts, LymeBites Blog

Brandilyn Harris, a suspense novelist who has Lyme disease, is currently working on a new novel on Lyme disease and the battles for treatment with this disease.  She has begun a website on Lyme Disease and asked to use my story, and it was featured on the website today.  Check her page out!

Eric\’s Story on Lyme Over The Edge