Lyme disease took my 20’s. No one should have to suffer like this.
Gus Thalasinos delivered the following public comments to the federal Tick-Borne Disease Working Group on Oct. 4.
My name is Gus, I’m a 32 year old Lyme patient and advocate from Long Island.
I had minor symptoms most of my life, but five months into my first job out of college, nine-and-a-half years ago, I was struck with chronic fatigue and have been bedbound since, at one point having over 30 symptoms across every bodily system, including encephalitis.
Mainstream medicine found nothing, and like many Lyme patients, I was gaslit and made to believe my symptoms were psychiatric.
I had nine negative Lyme tests over a six-year period, and only the twentieth doctor I saw knew that two-tiered Lyme testing misses 50% of cases.
Despite not testing positive, I was referred to a Lyme specialist who charged $2000 out of pocket for a first appointment.
I had to leave the state for blood work, but I tested positive for Babesia duncani, which some labs don’t have a test for, and Bartonella.
Two years into treatment my immune system was finally strong enough to test positive for Lyme.
This disease took my 20’s. No one should have to suffer the way I have. Suffering largely inflicted by the 40 years of negligence surrounding this disease.
There are over 700 peer-reviewed studies documenting the ability of tick-borne infections to persist against antibiotics. As a volunteer with Project Lyme, I created a page highlighting some of these.
The fight for legitimacy
In 1991, the CDC cultured and grew Borrelia from the cerebrospinal fluid of a patient after multiple long-term courses of IV ceftriaxone.
In her autopsy, SEVEN different strains of Borrelia were found in major organs.
Yet somehow we still have to fight for legitimacy.
Last week, a 22-year-old Lyme patient named Amelie Champagne took her life after years of struggle and misdiagnosis. An earlier diagnosis might have saved her life.
This could have been me eight years ago, and could be literally any other Lyme patient. I’ve met hundreds who will likely either die by suicide or from complications from their infections.
So many of us are unable to work or afford the treatment we need. Insurance covers NOTHING. Many need to fight for years to get Social Security Disability. Many are battling housing insecurity and live in unsafe situations.
Privilege shouldn’t dictate whether someone receives adequate treatment, but it does for Lyme. I have more privilege than most, having spent well over six figures on treatment. Yet, here I am 3.5 years into treatment and still unable to work.
Lyme mimics hundreds of diseases and has been found in Alzheimer’s, Lewy Bodies, and various types of tumors
The number of people impacted by these infections is in the hundreds of millions.
We need real change and we need it now.
Gus Thalasinos can be contacted via Facebook.
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