Jon Rothberg:
This is what Lyme disease feels like.
“It is only those infected with Lyme Disease that truly know how horrid this disease is. What it does to lives. The atrocity of knowing the truth that this chronic, debilitating, terminal illness is spreading and ignored by the agencies we pay to protect us.
In a society of people that are without knowledge, but full of opinion and feelings, see no government warnings, public service announcements, nor major media attention, dismiss Lyme & Co as minor illness that very well may imagined by the weak until the day it enters their lives. More resources went to the Ebola scare than possibly all Lyme resources ever and Ebola is a blood-borne virus impossible to contract without direct contact with infected body fluids unless changed by man.
We scream on deaf ears to warn them. Yes, we want cures, but we are already infected and do not want another being to know the feelings, physical and mental, of this disease for even a moment ever and we warn them.
The Plum Island Bldg #257 outbreak is so commonly known even wikipedia lists the timeline, but can we access the 40 year old files and employees to find out exactly what they did, the intended actions, how spread, how works on our bodies, and all so we know where to begin with immediate treatment, research and cures, knowing exactly what this is and how to stop it??? Nooooo since the no more patriots act, dhs, nsa, and all, there is no more freedom of information act status and all of the data that can stop this and save us is
No one from those labs has spoken out, written a tell all, nothing. Now how do we express to the public, in a way that opens them up to understand enough to do something, what it is like to know, while we suffer and our lives crumble, that our own government not only ignores, dismisses, and leaves us to die by torture silent and alone, they created the disease we suffer and will not allow us the information that tells us exactly what this is so science and medicine can work to stop it??? That is a tremendous weight for a person to carry and we do.
The mental burden of this disease is astounding. The cold cruelty of being sick and ignored is horrendous.Knowing there is nothing being done is chilling. Then having symptoms that do not match what doctors think they know and we guess from one treatment to another searching for any relief and not being allowed what we know helps??? Devastating at best.
We the infected study this every day and many have for decades because we have it, live it, and understand just how “interesting” this infection is. Nothing about this disease hurts and aggravates me more than watching, and knowing, children are suffering, many born to compromised lives at birth into a culture that does not care to help.
Next on the list is a sadness for those that feel Lyme is no big deal until it enters their lives and they find out the deal is as big as it gets and find out nobody cares for them either. Then, last as always, it is us, the infected, who within our suffering do what ever we can to warn the masses while supporting each other and the only family many of us have left after Lyme sent our blood families away.
~Jon Rothberg
