http://www.mychamplainvalley.com/news/you-ask-we-take-action-lyme-disease-sufferer-fights-to-get-disability-benefits/996245429 (TV News Story Here)
By: Staci DaSilva
BROOKLINE, Vt. – Pat Horrigan, 56, of Brookline, Vt., says he’s too sick to work. The federal government thinks he’s not sick enough to receive disability benefits.
“You don’t want to end up like me,” warned Horrigan.
In 2014, he started feeling ill.
“I was burning up. I had a real bad flu, or at least that’s what I was feeling like,” he said. “Couldn’t get my temperature down, throwing up, couldn’t hardly walk, couldn’t hardly do anything. I was just immobile on the couch.”
It wasn’t normal behavior for a Navy veteran with a lengthy resume of active jobs: from fire chief, to soccer coach to electrician.
“I’m a 110% everything I do, 10-12 hour days,” he said.
Despite never having the typical “bulls eye” rash associated with a tick-borne disease, Horrigan was tested for and diagnosed with lyme disease. He thinks he might have been bit while working on a farm baling hay.
In the four years since, he’s endured a legal battle to get what his doctors and counselors tell him he deserves.
“She said ‘let’s get you started getting disability.’ and I’m like ‘really? I didn’t know I even qualified.’ ‘Are you kidding me? Yea, you qualify and you’re a vet. Let’s see what we can do,” he remembers of a conversation early in his journey.
For the past several years, he has fought to get federal disability benefits.
He and his lawyer have continually been denied, appeal after appeal.
“John said ‘most of my clients are lucky to have one letter for a doctor. You’ve got four or five. This is like a slam dunk. You’ve got everything you need,’” he said of his lawyer’s view.
His latest motion has been pending in U.S. District Court in Vermont since September.
In the meantime, Horrigan’s been out of work and without an income. His wife went back to work as a nurse.
They moved into a corner of their daughter’s house in Brookline, Vt.
He thinks federal judges see the word “lyme” and immediately reject his claims.
“You’re sick. People stub their toes and they get disability. Something’s gotta change. They got to realize lyme is serious if you’ve got it as bad as we have it,” he said.
“To date, there’s just no evidence to suggest people have an ongoing infection like that,” said Bradley Tompkins, infectious disease epidemiologist at the Vermont Department of Health.
He, along with much of the medical community and the Centers for Disease Control and Prevention, says “chronic lyme disease” does not exist, or at least, is up for debate.
Most people diagnosed with lyme disease see their symptoms disappearance after treatment.
There is a recognized, yet rare (10-20% of patients), syndrome called Post Treatment Lyme Disease Syndrome that causes sustained symptoms for months, or up to a few years.
“It could be some sort of autoimmune response to the initial infection,” explained Tompkins. “There’s again, no evidence that there’s live bacteria that’s causing an illness and causing an infection. But there could be debris left over from the bacteria that is triggering your immune system to cause joint pain and joint swelling. So that’s what a lot of researchers are looking into now.”
“The CDC-infectious disease board have real conflicts when it comes to their potential findings on lyme disease,” said Lt. Gov. Dave Zuckerman (P/D – Vt.).
For Lt. Gov. Zuckerman, it’s personal. His wife, Rachel Nevitt, was diagnosed with lyme disease at least 6 years ago.
“She’s still only about half the person she was when I married her,” he said. “It is mentally debilitating. It is physically debilitating. It really changes your ability to function in society.”
He says it’s frustrating to hear health officials deny something he can see with his own eyes.
“Highly respected institutions, research institutions, Johns Hopkins, Stanford and others, have researchers that are really looking into this epidemic and finding that some of the research done and some of the findings done from the 90s and early 2000s is really outdated,” he said. “They’re finding a lot more instances where the lyme bacteria can survive with many of the antibacterial treatments and have ways to survive it and persist.”
Zuckerman says the onus is on the federal government to help people like his wife and Horrigan.
He adds that he pitched an idea to Governor Phil Scott (R – Vt.) last summer.
“Why don’t we work with private donors to endow a research chair at UVM Medical Center. Put UVM Medical Center in there with Johns Hopkins and Stanford, in the lyme research world, really put a bullseye for lack of a better term, on Vermont and say ‘we have a cutting edge, academic medical institution here looking at what the real issues are’ because it’s widespread in Vermont, throughout New England and the northeast,” he said.
But Pat Horrigan doesn’t have time for research. He wants change now.
“I’m blazing a trail for folks behind me because in a way I think that I am. It’s crazy. We’re sick. We need help,” he said.
This comes as lyme disease is on the rise in the region.
According to Tompkins, the Department of Health is still working through its data from 2017.
He says his department did more investigations last year than ever before, so he wouldn’t be surprised if the results show 2017 had the highest number of lyme disease cases, or close to the highest number, ever.
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**Comment**
And so it goes, round and round. Can’t get disability for Lyme because they say there’s no proof of infection.
But there is…..
700 peer-review studies showing persistence: http://www.ilads.org/ilads_news/wp-content/uploads/2015/09/EvidenceofPersistence-V2.pdf
https://madisonarealymesupportgroup.com/2015/09/19/proof-of-borrelia-persistence/
https://madisonarealymesupportgroup.com/2017/08/25/sleeper-cells-the-stringent-response-and-persistence-in-the-borreliella-burgdorferi-enzootic-cycle/
https://madisonarealymesupportgroup.com/2017/05/10/chronic-lyme-disease-a-case-definition-at-last/ Generation of antibiotic-tolerant “persister cells” in some pathogen populations [116-118].
https://madisonarealymesupportgroup.com/2016/12/21/dr-zhang-on-persisters/
https://madisonarealymesupportgroup.com/2017/12/02/scottish-doctor-gives-insight-on-lyme-msids/ “If you look at major medical microbiology and infectious disease textbooks, they state that after 4 weeks you can’t find the Lyme bacteria anymore. Therefore Lyme is then categorised as ‘post infectious’. But I get back to the point I’ve made before: if you can’t culture it, you cannot know anything about its viability. You do not have a organism specific test (culture or PCR), that guides your ‘test of cure’. How do you say that a bacteria is killed, when you couldn’t grow and measure it in the first place?” “One of the rules of infectious diseases medicine is that once you stop treatment and the patient stays better, they are cured. When they get worse, the infection has returned and they have relapse of infection and need repeat treatment. My ID colleagues live by that rule with most other infections, but not with Lyme.”
