Believe Us, We Hear You, We Are Listening.

Believe us, We hear you.  We Are Listening.

This is the first step of many that we will take to ensure that the rights of Lyme patients are recognized. The time for change is upon us. We will see this through to the end. ~ Allison Hoffman-Caruana

MayDay2014-7 Josh

The MayDay Protest of 2014 gave many hope. A sense of hope which gives them strength to keep pushing through. An anchor mentioned baby steps. We need giant steps but we are happy that this time the Infectious Disease Society of America acknowledged our voices. It was the first time they asked for a person to come in and speak their mind.

The only words they spoke to Josh and I were “Believe us, we hear you, and we ARE listening.” They truly showed a sense of empathy. – Allison Hoffmann-Caruana

We need a cure. Until a cure is found, we need the ability to be treated as our own caring doctors sees fit according to our needs. For many of us it is not clear what that treatment will involve, it is not just the use of long term antibiotics we want.

Here are a few words from Josh Cutler:

“Just so everyone knows, the idsa will respond with nonsense. We aren’t protesting for the use of long term abx (antibiotic) use.

Folks please know we are not fighting for them to give us the OK to use long term abx. While this works for some, it’s not a cure.

What we want is for them to revise the guidelines, accept persistent Lyme as a diagnoses. This will open the door for people to do research into the chronic form of the disease and hopefully produce a cure. This is what we ultimately want, not the use of long term abx. While that might come and help some that’s not our demand. It’s a complete revision of the Lyme disease guidelines to accept and acknowledge chronic Lyme.

Keep this in mind as we continue to storm them. Please keep writing them. Their only response to the news cast was that long term abx are dangerous, and an outdated John Hopkins University studied showed that “Chronic Lyme disease” doesn’t exist.

The protest on the idsa has only begun. Science will prevail over this nonsense.”

Josh continues:

“Folks please understand we are not against long term abx use and believe for some they’ve saved lives. They are not a cure, and don’t work for everyone. We need a cure. That’s what we fight for. We don’t promote a certain treatment, but are looking for acceptance of chronic Lyme and the freedom for a Doctor to treat their patient without fear of persecution.

As far as what documents we presented all info is listed on our website. The brilliant Saby Mo complied some amazing work for us. Check it out on our website.”

Josh Cutler (Friday, May 23, 2014)

Thank you everyone for coming from all over the country try to help join in change. You guys are the heroes of this event. Today is our last day, I know everyone is beyond exhausted. Let’s finish strong and let the IDSA this will continue until they accept science and change their guidelines. I would also like to thank the hard working people below who made this day possible. Please take your time to thank them for their effort. Countless hours of hard work goes into planning these events.

Allison Hoffmann-Caruana; Saby Mo; William Duggan; Melissa Ann; Bruce Alan Fries; Hilton Lisa; and Tracy Hamer Will.

And for everyone who made calls and will continue to call and storm them from their home. Let’s finish strong today!’’

Many of us would have liked to be out there in the trenches with all those in Arlington, VA, rallying in front of the IDSA headquarters, but this horrendous disease has taken a toll on our bodies, our finances and our families which made it impossible for us to be there. However, many of us were there in spirit and supporting all of them from our hearts and our homes.

We thank you for representing us. Thank you!

“All of you at Mayday, from me and my entire family that has chronic Lyme disease, thank you! You are all my hero’s. Change is coming! This will be the year! We open their eyes to our disabling pain and financial ruin. I’m overwhelmed with joy, and yet with so many tears that one day no more lives lost, no more unnecessary suffering, no more suicides, no more misdiagnosing. Because of you all, and us at home doing our part, let’s get the guidelines updated, let’s educate doctors and the medical field worldwide, let’s heal, let’s cure Lyme and co -infections. A BIG thank you from my family.” ~ Lori C.

“As far as the effort put in by the Lyme Community and the ones who were able to be the faces for us this time around, huge thumbs up and good job!” ~ Jasmyn C.

“I’m so proud of all the work and action you’ve done. Thank you!!!” ~ D. Deb

I’d also like to thank Tony Perkins and John Henrehan of FOX5 News for covering the Lyme controversy. It is important to thousands of us still battling this horrendous disease caught in the crossfire of the “Lyme Wars” all these years.

DC News FOX 5 DC WTTG

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