Lyme Disease in 2018
As I lay here in bed, yet another day my mind is racing. I have had Lyme disease since 1991 I believe. That is when I first started experiencing random symptoms such as panic attacks and heart palpitations. Through the years symptoms got added on and sadly, most of you reading this probably know how the rest of this story plays out.
When I first got sick, there was only a few forums such as Lymenet and Canlyme to turn to online. (And they were and are still saving graces.) There was not very many websites that were not IDSA slanted. Now, in 2018 there are websites, forums, blogs and many online support groups to turn to.
Back in 1991, when I got diagnosed there had a been a couple Lyme protests and awareness events, but they were scattered across the US and Canada. Now in 2018 there have been hundreds, maybe thousands of protests, walks, rallies and other awareness events, and they have been done across the world such as the Worldwide Lyme Protests. Lymedisease.org and The Mayday Project does annual protests. While many support groups such as Lyme Support Network and Kansas Tick Borne Disease Advocates do annual walks and runs. While others do runs and bike marathons.
The Lyme community has written newspaper articles, had news interviews, and have done a couple Calls to Congress campaigns. We have done Ribbons across America and Samantha’s Project with green light bulbs to light up our towns green. There have been music festivals and art shows.
There has been celebrities speaking out about Lyme disease.
Yet, still when I go to the ER or try to talk to my regular physician about Lyme disease do I still get met with an eye roll and total cluelessness? Why when there is someone who dies from Lyme disease just about every week just in our small online community is it not on the news everyday while the Swine flu, Bird flu, seasonal flu, Ebola and other illnesses that kill people are talked about non stop?
Why is there still a stigma?
Why is it not being studied more? And the studies there are, not being taken seriously.
Why do I hear about new “better tests” coming out all the time but never find a doctor who has head of little less will use any of these tests?
Why do so many people claim to be better yet we see the same people year after year in the Lyme groups still sick? Are there any treatments that truly work?
What do you think we have to do moving forward to get recognition? To get research done? To get doctors educated about Lyme disease and the syndromes we all have?
Below, please comment on any of the following. Please include advances to give others hope but also include your frustrating. Let’s keep it real. Let’s share the positive and the negative, the hopes and the frustrations.
Here are some answers from our Facebook Post: