Archive for April, 2012

Messages of Hope Project – We Need Your Help!!!

// April 30th, 2012 // No Comments » // LymeBites Blog, Lymie Support, May is Lyme Disease Awareness Month, Support Groups

May is Lyme Disease Awareness month and on May 7th, LymeBites will be unveiling Messages of Hope,
a video of inspiration for those suffering with this disease.

Please join us in this collaboration by submitting your own written message of hope to show
your support and share your strength. If you are comfortable, please
include your name (or initials or nickname-whatever is your
preference) and at least a general location.

Submissions are due by Friday, May 4th. For any questions and to submit your
message of hope, please contact Ginger Schwartz at

All submitted written Messages of Hope will be published on May 7th along
with the video.

Thank you for helping to get the
word out and showing your support for the Lyme community!

A Forum on Tick-Borne Diseases – What’s NEXT?

// April 23rd, 2012 // 4 Comments » // Lyme Media, LymeBites Blog

A Forum on Tick-Borne Diseases – What’s NEXT?

Skidmore College  Saratoga Springs, New York May 21, 2012

Honorary Chairman: Congressman Chris Gibson

Please forward this invitation (4/6/12)

A Special Invitation

Congressman Chris Gibson (NY-20) invites all individuals, communities, organizations, or enterprises with interests pertaining to Lyme disease and other tick-borne diseases to join him for a unique public forum he will be hosting in the Zankel Music Center, Skidmore College in Saratoga Springs, New York, on May 21, 2012 from 8:00 am to 5:00pm.

The event, entitled A Forum on Tick-Borne Diseases – What’s NEXT? seeks to focus public awareness on the future of these difficult diseases. A group of speakers, leaders in their fields, will present forward thinking, problem-solving proposals to a  panel of policymakers from both private and public sectors about what can reasonably happen NEXT to advance the cause of improving the lives of people suffering with Lyme disease and other TBDs.

Pamela Weintraub, renowned author of Cure Unknown, and Executive Editor of Discover, will be the keynote speaker for this event. Pam will speak to the multi-dimensional nature of this extraordinary subject, from the patients to the politics, from the science to suppositions that define this stunning medical debacle.

Dr. Richard Horowitz, internationally renowned clinical physician and consultant in the field of Lyme and tick-borne diseases has been working with patients for over twenty years. He has seen the evolution of the diseases from the clinical perspective, and will present a proposal for a paradigm-shifting approach to the diseases that could encourage new perspectives, new synergies, and new research in this difficult subject.

Dr. Daniel Cameron, former President of the International Lyme and Associated Diseases Society, an active clinical physician, researcher, and vocal advocate for Lyme patients and improved Lyme policy in the U.S., Dr. Cameron will speak to the extreme difficulties the current medico-political environment imposes on the doctors who aggressively treat Lyme disease.

Dr. Kenneth Liegner, Dr. Liegner is a Board Certified Internist with additional training in Pathology and Critical Care Medicine, practicing in Pawling, New York.  He has been actively involved in diagnosis and treatment of Lyme disease and related disorders since 1988. Dr. Liegner will present his ideas for a comprehensive plan for dealing with the spectrum of problems that are the “Lyme issue” as we move into the future.

Lorraine Johnson, J.D., MBA, one of the best known and most highly regarded advocates for Lyme patients, is an attorney advocate on issues related to the medico-legal and ethical aspects of Lyme disease and has published over 30 peer-reviewed articles on this topic. She is the Chief Executive Officer of, and is a director and an officer of the International Lyme and Associated Diseases Society.  She will speak on the Burden of Illness, an in-depth study of what the costs are to people who have Lyme  and other tick-borne diseases and to their communities, and she will recommend research paths forward to address these issues. Lorraine authors the Lyme Policy Wonk blog, on the site.

Holly Ahern, associate professor of Microbiology at SUNY Adirondack, will present the findings of her 2011 research study on the number of cases of Lyme disease that go uncounted in our “official” statistics.  Most cases of Lyme disease are NOT reported, and this number of “invisible” cases, will ultimately have a significant impact on all our communities. Multiplying the “undocumented” cases with the financial burdens of the disease foreshadows a public health crisis on the horizon.

Dr. Ahmed Kilani, President, Founder, and Director of Clongen Labs, will discuss new laboratory methods to enhance the detection sensitivity ini the testing process.

Dr. David Leiby, Head of Transmissable Diseases at the Red Cross, will speak on the concerning and challenging issue of Babesiosis now being found in the blood supply.

Dr. Edward Breitschwerdt, DVM, of North Carolina State University, will address the emerging challenges of Bartonella, one of the co-infections that is being observed with increasing frequency.

Lyme victims, their families and friends, advocacy groups, medical professionals,  business professionals, government agencies, policy makers, and others associated with these diseases or their impact on people are urged to attend to both hear what the speakers are proposing as well as to demonstrate to the public, to government, and to the media that there are a LOT of victims of tick-borne diseases.

There is no cost to attend the forum.  Information about how to pre-register and about accommodations can be found at

Ulster County Lyme Disease Support Group April Meeting

// April 22nd, 2012 // No Comments » // LymeBites Blog, Support Groups

Hey everyone!  The (mid) Ulster County Lyme Disease Support Group for April is this Wednesday April 25th, 2012.  Here is the information from March Gallagher, the person who has taken so much of her time for several years to make this group even be available for all those who need it.  Also, anyone who is willing or able to help March out with the support group please read her note below.

Hope to see you all there!

Lyme Support Meeting, YES!

Hi folks,

There WILL be a Mid-Ulster Lyme Support Meeting this Wednesday

Come and share a tip or fear about tick management.

7:00-8:30 pm
Hudson Valley Sudbury School
84 Zena Road, Kingston

For more information:
March Gallagher

PS:  For those who wish to know or haven’t been invited to this group before:
This is not a group in which experts come present information.  This is a group of regular people who need to vent about how much lyme sucks and share info.
I started this Ulster County Lyme Support Group in 2008 when I found myself traveling to Northern Dutchess to find support.
We met the 4th Wednesday of every month until the beginning of 2012.  Consistency to time and place of meetings is key for support.
I have to work some evenings and this made the pr and running meetings hard to manage, thus I discontinued the group.
Upon numerous requests and in light of the very TICKY spring I am restarting this group.
If there is any assistance you can give the group let me know.

5 Things I Love About Lyme Disease (Repost from April 2010)

// April 18th, 2012 // No Comments » // Eric's Blog, LymeBites Blog

(I originally wrote this in 2010…and shortly after was a guest on a local radio show about Lyme disease and Lyme Disease Awareness Month, and the person doing the show was really impressed with this post and how anyone could “love” anything about this nightmare…but I truly believe there are silver linings in every cloud, and so many wonderful things would not have happened the last 3 years if I had not gotten sick. Would I choose to do it again? I can’t say I would…but I can’t imagine my life now without many of the people that Lyme brought into it, as well the life lessons I’ve learned along the way. Been 2 years so I wanted to repost this and give others an opportunity to think about things that they love about Lyme disease. (Okay…maybe just things you like or are grateful for, but what things came into your life because of this disease that you now count as a blessing? Those are things we wouldn’t have if we weren’t given the opportunity to get sick and through that to grow and learn and become a better person from the experience.) So read what I said 2 years ago about things that could make me love being sick, think about your own journey and share with us what you’re learned to love since getting sick (or if you have a loved one who is sick, what you’ve learned to love as you’ve gone through the journey with your loved one). I hope everyone can find a way to find happiness in everything, in all that is good and bad. This disease is BAD. But there are still some truly amazing things that have happened. I’m working on an update to this post, 2 years later we’ll see what I still love about Lyme disease!) *Also please note, my milkshakes eventually turned into daily functional food shakes as I went off sugar, yeast, dairy, gluten and pretty much everything else…but in the beginning I didn’t realize what an important role diet plays in your recovery

One of the top 5 reasons I hate Lyme disease is because I have heart attack symptoms every day.  If I ever actually have a heart attack I won’t know the difference.  Now I’m wondering what the other top 4 reasons are that I hate it for.  But then I decided there are more than enough reasons to hate Lyme disease, and thousands of places a day that are devoted to the reasons to hate it. 

So how about something different?

Can you think of 5 reaons why you LOVE Lyme disease?  Okay, okay…stop laughing, I’m serious!  I know we’ve all been affected either as a victim of Lyme, or the loved one of someone with it.  But the old saying that every cloud has a silver lining is true, so if you really think about it, what about Lyme disease can you find that you LOVE?

For me it’s pretty easy to come up with 5 things:

1.  As much as I hate being out of work because I am so sick, it has been kinda nice having the majority of the last year off.  Granted at least half that time I was too sick to even be able to enjoy the smallest part of a day, but as I slowly get better there’s more and more I can enjoy about the day while I am still out of work. 

2.  I have become so much closer with my family and my friends.  There are always casualties in the relationship department when chronic illness strikes, but I seem to be blessed with such amazing friends the losses have been limited.  However the ones who have stuck by my side have been amazing blessings to me and in supporting me to keep fighting to get better. 

3.  I have an excuse to always say ‘no’ when people ask me to help them do physical labor.  I am 6’4″ and over 250 lbs, most peopl expect a strong man to help them carry things, lift things or move things.  Between Lyme disease and my PICC line I always have an excuse to sit back and sip a lemonade while someone else does all the hard work. 

4.  I love the Lyme disease community.  If I had some other awful disease, I think I’d try to sneak over to the Lyme disease side of the party because it is quite an amazingly talented, compassionate and loving group of people.  I can’t think of any other group of people I’d want behind me in this struggle then the community with which Lymies have to turn to. 

5.  Milkshakes.  I have had more reasons than ever in the last year to have milkshakes, and to have them without guilt.  (Of course this is backfiring at the moment while I’m completely sugar free right now, but it treated me well for a good 11 months or so.)  And the truth is, I love milkshakes.  So if I’m gonna have to suffer with something like Lyme disease, then I’m glad it’s reason enough to have good milkshakes on a regular basis.  (Anyone can have bad milkshakes on a regular basis.)

See how easy that is?  So I want to know…what 5 things can you come up with that you love about having Lyme disease?  (If you can only come up with 3 or 4 I will not be grading you on this, so that’s okay too.)

The original post can be found here: 5 Things I Love About Lyme Disease April 2010 Post

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.