TICK BORN DISEASE WORKING GROUP MEETING BRINGS HOPE TO LYME PATIENTS

 

The lack of scientific progress regarding Lyme disease has created a lot of frustration within the Lyme community. Lyme patients are tired of being patronized, discounted and dismissed.

Thanks to the Tick Born Disease Working Group changes are going to be made. Within the two-day meeting  of the HHS Federal Tick Borne Disease Working Group held on December 11th and 12th, on Washington D.C., vital questions were addressed.

 

Here’s a bullet point summary of the meeting:

 

DEVELOP ACCURATE DIAGNOSTIC TESTS

  • Develop tests capable of recognizing all stages of the infection and the co-infections
  • Discard the two tier testing approach
  • Educate the patient regarding the test’s reliability (false negativity)
  • Fund new research 
  • Examine together medical anecdote, control studies, empirical observations
  • Leave aside egos, pride, intellectual rights, come together for a better cause.

 

FIND WAYS TO IMPROVE THE LIFE OF LYME PATIENTS

  • Forget the CDC definition of diagnosis
  • Recognize, treat Lyme and co-infections
  • Create a national education course for medical providers
  • Provide support to the doctors treating Lyme patients (no more penalties, disciplinary procedures, license suspension or other repercussions)
  • Allow physicians to treat the patients and their symptoms.

 

METHODS OF PREVENTION

  • Mass media prevention campaign
  • Tick awareness and prevention curriculum  should be developped and implemented in all forms of schooling
  • Develop a safe and effective vaccine against all Borelia strains and co-infections
  • Create proper screening technique to avoid transmitting Babesia to the national blood supply for the public’s safety.

 

 

For a more in depth information regarding the agenda, the public and federal members, stakeholders please watch the videos below:

Tickborne Disease Working Group NatCap Lyme Presentation

TickBorne Disease Working Group – Jenna Luche-Thayer

Tickborne Disease Working Group – Nicole Malachowski

Tickborne Disease Working Group – Susan Green

Tickborne Disease Working Group – Olivia (LivLyme Foundation) – Public Comment

 

FALL IS HERE!

As autumn arrived earlier than expected, the delightful fall foliage brought in the foil-peeping tourists. During my morning hike, I noted that autumn leaf colour phenomenon has started. On my way back to the parking lot I passed by a lot of people. To my surprise, most of them were not properly equipped for hiking.

I felt compelled to tell them to watch out for ticks. Some of them were foreign tourists who had no idea what was a tick, or barely spoke English or French, while others thanked me politely brushed me off.

I did not feel offended and did not care if they might have considered me weird. I would have probably done the same thing ten years ago. Prevention is key. I have said it a million times and I will say it again, hoping it will make a difference, that it will avoid having someone else getting Lyme.

Although more and more people get bitten, and Lyme is now making the news, some think is not real. They consider it a hoax. They do not understand the risk that they expose themselves at by hiking in shorts and flip-flops.

A simple Google search is more than enough to show that there are cases of Lyme disease within Canada. Actually, you can hear it on TV. Today  even CTV Ontario News announced that a tick found in Sudbury has tested positive for Lyme disease. If that is not enough proof, I don’t know what will be.

Would you go hiking in shorts?