Super Bowl XLVI JumboTron Used for Misdiagnosis of Lyme Disease Education

February 5, 2012 in Lyme, Lyme Disease

ILADS LymeWall Gallery on Superbowl Jumbotron

ILADS LymeWall Gallery on Superbowl Jumbotron

The International Lyme and Associated Diseases Society is running a powerful public service campaign to create greater awareness of the misdiagnosis of Lyme disease on a JumboTron outside the XLVI Super Bowl at Lucas Oil Stadium.

It’s not often that you find football and the misdiagnosis of Lyme Disease mentioned together. This week, however, that’s exactly what has happened thanks to The International Lyme and Associated Diseases Society (ILADS) public service video on display on the outside JumboTron at Super Bowl XLVI at Lucas Oil Stadium in Indianapolis, Indiana.

Lyme Warriors on the ILADS Lyme Gallery

ILADS is also promoting a Lyme Gallery, where you can upload your photo and let them know what you think about the Superbowl Jumbotron. You’ll notice fellow LymeWarrior.com creator Lyme_Warrior in the clipped Lyme Gallery image in this posts.

We’re pretty sure we spotted a few other Lyme Warriors in the ILADS Lyme Gallery, too. If you also uploaded your photo and comments on the ILADS Lyme Gallery, leave us a comment below with your thoughts on your participation.

What do you think about the overall value of this public service campaign to make the mainstream public aware of the misdiagnosis of Lyme Disease?

Super Bowl just the ticket for Lyme disease education

“Lyme disease is a silent epidemic in America. We want to alert and educate consumers about this disease, which is often misdiagnosed. Left untreated, it will become chronic and debilitating,” said Leo J. Shea, III, PhD, President of the non-profit International Lyme and Associated Diseases Society (ILADS). “Tick-borne illnesses compromise your immune system and the diagnosis, which is largely based on symptoms, can be elusive unless a physician is Lyme-literate.”

For those not going to the Super Bowl in Indianapolis, you can watch the video here »»

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Happy New Year!

December 31, 2011 in General, Lyme, Lyme Disease

 

Happy New Year to everyone in the Lyme community. I hope that the New Year brings health and happiness to all. And that 2012 is a little bit easier for everyone.

-Jo-Ann

A Look at Lyme Disease, Its Diagnosis & Treatment

October 6, 2011 in Lyme, Lyme Disease

Starting today a free 3 session course covering medical science and the politics of treating this disease will be held at the Newport Public Library from 6:30pm to 8:45pm in the Program Room

Oct 6, 2011: Screening of the award-winning documentary “Under Our Skin,” featuring case studies of people with Lyme disease, plus interviews with doctors who have risked their professional standing to follow what they believe to be in the best interest of their patients.

Oct 13, 2011: “Ethical and Practical Dilemmas of Treating Lyme Disease,” a talk by Dr. Sam Donta, renowned infectious disease physician/researcher from Boston, focusing on the tension between needs of patients and the limited treatment options offered by insurance companies.

Oct. 20, 2011: Health Care Reform and Paying for Treatment, speaker to be confirmed. How will the Patient Protection and Affordable Care Act affect the mechanisms in place to determine payment schedules for medical services? Will government bureaucrats now be controlling medical coverage? How will government interface with private insurance to affect patient care?

FREE AND OPEN TO THE PUBLIC

Sponsored by The Learning Center at Channing Memorial Church in Newport with support from Lyme Support Group Newport. FOR MORE INFORMATION CONTACT: learningcenter@channingchurch.org

I Want More…

October 4, 2011 in Lyme, Lyme Disease

I want more.

I want more than to just survive.

I know that I am in the battle of my life.Just like everyone else with Chronic Late Stage Lyme disease, every day is a fight. Sometime I don’t feel like I have the right to complain because I know so many people that are suffering just as much as I am; some even more. And what does complaining do for me anyway?

Not much.

But this is my blog and I am going to anyway. I am going to because I need to get it out of my system, and I want more…

I want my life. For me, that means more than simply existing.I want more than to not succumb to this disease. I want my life. I don’t want the one I had before Lyme disease.That is not possible

Too much has changed.

I have changed.

And what does that look like? I want to envision what my life will be like when I am no longer sick, but I’m not even sure what that would look like. What does well me look like? I know that I am more patient than before this happened. I know that I am more compassionate, but what does the whole well package look like? What does a day without pain feel like? I imagine pretty good!

Sometimes it feels like I have been sick forever. That feeling of normalcy is so far from where I am, I wonder if I will ever get there. And to be perfectly honest, that scares me. Most days I won’t even let myself go there, but the fear is there, hiding in the shadows.

I am angry that I am still sick. I am frustrated that I am unable to do the most basic of tasks. I am tired of being in pain. I am really pissed off at the CDC and the NIH and the IDSA. Those groups are in a position of power that can help or harm. I have been harmed by the choices that they made. And the kick in the stomach is that it just didn’t have to be like this.

The world keeps going and I am still in bed. Wishing myself out of bed is not working. I have 3 amazing kids and you don’t get a re-do just because Mom is sick. I don’t want to miss out on any experience with them, for any reason, but with Lyme disease; it is inevitable. It makes me really really angry, because my kids deserve better.

Is it because I no longer feel like death is lurking around the corner, that I am longing for more? Is it because now I know I will survive this that I want more? I want to walk, and climb stairs, and do all the mundane things that normal people do without thought. I used to take for granted that I could do all these things, now I find myself staring at people as they walk with ease and wonder if they realize how truly lucky they are.

Probably not.

I suppose because I have the benefit of knowing what a blessing it is to be able to move freely that I won’t take the small things for granted.

I am surrounded by beautiful people who support and love me in any physical condition. It is because of them that I have been able to survive as well as I have. I am so grateful for them. There is nothing better in this world than knowing, really knowing, that you are loved.

And I am loved.

 

Lyme Chick Shares her Lyme Story

September 29, 2011 in Lyme, Lyme Disease


My dear friend Maisie has shared her Lyme story in a new video. Please take a few minutes to watch.

Under Our Skin: Now on Hulu

September 25, 2011 in Lyme, Lyme Disease

 

 Under Our Skin the award winning documentary about Lyme disease is now available to watch on www.Hulu.com for free. If you haven’t seen it yet, it is well worth the hour 44 minute investment of time.

We live in an endemic area, I am chronically ill with Lyme, and there was so much covered in the documentary that I did not know. I think this documentary should be seen by everyone, whether you are sick or not or live in an area that is considered endemic or not. This is a global problem with deadly consequences if ignored.

On a personal level, I could really relate with the stories of the people with Lyme disease. It may affect different parts of our bodies, but our struggles are very much the same. It helped me to see that I was not alone in being misdiagnosed. Knowing that there were many others like me that had to argue with doctor after doctor about the possibility of Lyme being the cause of their symptoms gave me strength. I know now that I am not alone. I wish that Under Our Skin had been out when I first started having symptoms. It would have saved me a lot of pain and suffering.

If you would like to start watching; click here

 

Mental Health Implications of Lyme Disease: Bryant University Conference

September 4, 2011 in LLMD, Lyme, Lyme Disease

Image Credit: WebHealthGuides.com

 

 

On Friday, September 16, 2011 from 8:00 am to 3:30 pm Bryant University in Smithfield, RI will host a seminar on the mental health implications of Lyme Disease. The event is sponsored by the Lyme Disease Association, Inc., the Rhode Island Chapter. They have now opened seating to the general public at Bello Center Grand Hall. The cost of the seminar is $75.00 if payment is received by 9/10/11 and $80.00 is received after that date. Speakers include Patricia Smith, President of the Lyme Disease Association. Inc., Sheila Statlender PhD., Sandy Berenbaum LCSW, BCD, Judith Leventhal ,Denise Lang-Grant, Ed.S, L.P.C, PhD and featured speaker Robert Bransfield, MD DLFAPA will be discussing the mental health implications of Lyme Disease. Coffee and lunch are provided in the cost of the seminar and their will be a question and answer period at the end of the conference. The mistress of ceremonies for the event is Barbara Morse Silva, the health reporter for WJAR TV 10. For online registration click here. You can register by mail by first downloading the registration form here.


One Year Later…My Lyme Disease Journey

September 1, 2011 in LLMD, Lyme, Lyme Disease

Well, it has been one year since I started treatment for Lyme disease. When I first got the diagnosis, I was relieved. Relieved that I didn’t have to argue with doctors about what was wrong with me, and more importantly, relieved that we would finally start treating the disease that was impacting my entire life.

I started treatment with a huge sense of optimism. After the first month my SED rate had dropped by 50%.I figured at that rate I would be well in no time. The doctor warned me that these things take time, but even he, who is a self-proclaimed pessimist, said he thought I would be better in a year.

For me the past year has been filled with many twists and turns. Let me start by saying that although I am better, I am not healed. My symptoms have improved dramatically, but they are still here. I still have muscle pain, joint swelling, fatigue, nerve pain, cognitive issues, and well, the list can go on and on.

As I write this post, I am able to walk independently with a cane. Not what I pictured a year ago, but I can walk on my own. Last year at this time rolling over in bed was a major project that required help. While my body is not pain free at the moment, it is not wracked with the unrelenting pain of last year.

My joints are still swollen, but this is the least swelling I have seen in my joints in 10 (that’s right ten) years. And although reading is a much slower process than I would like; I can only read a few pages before I have to stop because I can no longer absorb what I am trying to read. Last year I was having difficulty reading one single sentence. I tried breaking it up into little pieces to absorb something, but for the most part I just gave up. It was simply too frustrating.

The migraines that were an all too familiar occurrence have now become only an occasional problem. The fatigue seems to come and go, but without the intensity that it had at its peak. And the twitching that was an almost daily annoyance, comes back once in a while to remind me the battle is still ongoing.

All in all, I have a long way to go before I could consider myself cured, but I have come so far and for that I am thankful.

Lyme disease has taken so much from me. Two of my children don’t even remember what I was like before all this sickness. They were just too young when this started. It makes me angry that I was never able to do some of the things that I wanted to do with them because I have been so sick. But for as much as Lyme disease has taken from me, it has given me much to be grateful for.

I am truly grateful for my family. You know what real love is when you are at your sickest, most desperate moment, and they are simply there. There with a gentle touch or simple word of encouragement or kind gesture. My mother-in-law spent day after day cleaning my house, doing my laundry, and checking to make sure I was still one of the living for months. The love was felt in every one of those kind gestures. My husband has been there to pick me up when I have fallen (both literally and emotionally), and encouraged me when I didn’t have the strength to do it for myself. I have seen a side of my children that most parents don’t. They are kind, compassionate young men, and I am so honored to call myself their mother.

And finally I am grateful for the truly inspiring people that I have met on Twitter, Facebook, and recently on Google+. People like @HannahKicksLyme, @thenameiskate8, @LymeChick, @AlisynGayle, @Berylmom, @Zebrafinch, @Crashmair and @dizzygrl05 (just to name a few) have saved me from the isolation and fear that this disease brings. They have shown me empathy and complete understanding of the pain that I have been going through. There have been times when I thought I simply could not take any more, and in those moments, there was always one of them there; telling me that it would get better and it was okay to feel this way.

I don’t know that words can adequately describe how very grateful I am for all that I have been blessed with.

So as I look back on the struggles of the past year, I must also remember the triumphs. And always keep fighting for the life that all of us with this devastating disease truly deserve.

 

Lyme-Aid Family Music Festival & 5th Annual Lyme Disease Awareness Walk

August 24, 2011 in Lyme, Lyme Disease


On Saturday, September 17 · 10:00am - 5:00pm at Thompson’s Orchard, 27 Gloucester Hill Road in New Gloucester, ME they will be holding the 5th annual Lyme Disease awareness walk and Lyme-Aid Family Music Festival. The walk is scheduled to start at 10:00am with the concert to follow. If you live in Maine this sounds like a great day to enjoy some of the local bands while raising awareness for Lyme disease.

The concert lineup for the event is as follows:

1. Don Roy Trio 11-12pm

2. Michael Krapovicky solo acoustic 12-1pm

3. Northern Groove Trio 1-2pm

4. Amy Johnson solo 2-3pm

5. Linc Bedrosian 3-4pm

6. Brazen Cane unplugged will be playing from 4-5pm!

 

All donations are welcome for this event, but a donation of $10.00 for the walk registration and concert is suggested. Kids are free for this family event.

Bring a picnic and your lawn chairs and enjoy a relaxing day of music with your family and help raise awareness for Lyme disease.

 

 

Mayo Clinic Finds New Bacterium Causing Tick-Borne Illness Ehrlichiosis in Wisconsin, Minnesota

August 22, 2011 in Lyme Disease

Wednesday, August 03, 2011

A new tick-borne bacterium infecting humans with ehrlichiosis has been discovered in Wisconsin and Minnesota. It was identified as a new strain of bacteria through DNA testing conducted at Mayo Clinic. The findings appear in the Aug. 4 edition of the New England Journal of Medicine.

Doctors at Mayo Clinic, the Centers for Disease Control and Prevention (CDC), the University of Minnesota, the University of Wisconsin, and state and local health departments say the new species from the Ehrlichia genus can cause a feverish illness in humans. The new bacterium, not yet named, has been identified in more than 25 people and found in black-legged ticks, also known as deer ticks (Ixodes scapularis), in Minnesota and Wisconsin. Researchers used culture and genetic analyses.

“Before this report, human ehrlichiosis was thought to be very rare or absent in Minnesota and Wisconsin,” says Bobbi Pritt, M.D., a Mayo Clinic microbiologist and director of the Clinical Parasitology and Virology Laboratories who helped coordinate the multi-agency team. “Therefore, physicians might not know to look for Ehrlichia infections at all.”

Ehrlichia infect and kill white blood cells and may cause fever, body aches, headache and fatigue. More severe disease may involve multiple organs such as the lungs, kidneys and brain and require hospitalization. Ehrliochosis rarely results in death.

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