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How Long COVID can lead to acceptance of Chronic Lyme

By Isabel Rose, Project Lyme Board Member & Founder of Mothers Against Lyme 

My life, and my children’s lives, have been completely derailed by Chronic Lyme disease. Hopefully, the studies surrounding “Long Covid” will help those of us with similar stories of endless suffering. I’m sorry it’s taken a pandemic to shed light on ALL of our stories of chronic disease, but if this harkens a new era of research for us, I’m grateful. Hopefully now, The NY Times will defer from publishing articles doubting the validity of Chronic Lyme disease, as it has done in the past. Those of us who have been sidelined from life’s pleasures don’t need any more negativity cast our way. I wonder why Covid Long Haulers have been supported, while Chronic Lyme sufferers have been shunned? What does it reveal about our medical establishments, from schools, to hospitals, to private practices and government institutions? It tells us that mysteries scare us, perhaps because we have become accustomed to quick fixes. Like the changes required to truly tackle global warming, a complete change of ideology is needed. If this is the moment of greatest darkness that leads to a brighter day in medicine and the industries around it, I welcome it. Let’s embrace medical mystery with the awe and curiosity it deserves, and challenge our researchers to strive ever harder. Let’s encourage patent holders to keep their greed at bay. Let’s unite, as our new President has urged: unite for long-term healing, in every sense of the word.

This letter is in response to a recent article from The New York Times that draws striking similarities between long COVID and other persistent diseases, particularly ME/CFS and chronic Lyme. Isabel’s powerful letter examines the history of denial and attacks from mainstream media on the Lyme community, and their sudden yet potentially beneficial pivot towards acceptance. You can find the entire letter here on Isabel’s Medium account.

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Reimagining Non-profits Capabilities During the Virtual Era

The nonprofit sector, like the rest of the world, has been completely upended as a result of the COVID-19 pandemic. Luckily for Project Lyme, we were able to host our annual fundraising Gala in February before the lockdown and social distancing kicked in. It was imperative for our organization because this yearly fundraiser covers the costs of most operations and programming. Without it, the future of Project Lyme could have been at stake. This is a common theme for many nonprofits in this era. According to a June study by Charities Aid Foundation of America, 97.4% of organizations anticipate a decrease in fundraising over the next twelve months. Additionally, 87.9% of nonprofits chose to cancel their major events. Project Lyme was able to bank our funds from the Gala, but we cannot bank on being able to host another in-person fundraiser this year. As a result, we developed a digital strategy made to support our donors’ journeys.

As the pandemic began to grow, our Board responded to the needs of the community and created a Lyme and COVID-19 Facebook group run by Dr. Robert Bransfield. It was consistently updated with relevant information imperative to its 2,200 immunocompromised members, and provided a safe place free of misinformation. Starting in April, we filmed a series of videos addressing the impacts of the COVID-19 crisis. Seen by over 85,000 people, this series provided much needed guidance from experts in the field. Board Member David Roth hosted Dr. Richard Horowitz drew comparisons between COVID and Lyme in a discussion about David’s bout with both diseases and the similarity in treatment Dr Robert Hedaya and his son Joshua spoke about having COVID-19, treating a family member, and the psychological effects that face both Lyme and COVID patients. In May, during Lyme Awareness Month, our Advisory Board Member and notable Lyme Advocate Mellissa Bell hosted Dr Steven Phillips discussing how to overcome the unique challenges facing those needing treatments, especially in a pandemic situation. Later that month, Board Member Isabel Rose hosted Dr. Linda Lancaster, a holistic practitioner who gave an enlightening conversation to educate on alternative treatment methods. In late June, Dr Brian Fallon hosted a Facebook Live where he answered questions from our audience on some of his current studies with Columbia University, such as the use of disulfiram to treat chronic Lyme Disease and the benefits of meditation and yoga. This important content was delivered across all media platforms to ensure accessibility and reach.

In July, Project Lyme wanted to provide a unique take on awareness content. We employed Lyme survivor and The Voice Finalist Ryan Quinn to help us achieve this goal. He hosted a Facebook Live performance and PSA where he played a variety of popular songs while sharing his personal experiences with the disease. Ryan felt that “this event both built community and provided awareness. I’m sure most people that tuned-in have been affected by Lyme Disease or another tick-borne illness in some way. All the comments were positive and supportive, and provided someone like me the platform to not only sing, but to tell my own Lyme Disease story”. While the participants of the event felt rewarded, the ROI of the event was still important to the Board of Directors. The performance was an immediate hit with around 7,000 views in the first week. There was also lots of engagement from Lyme survivors thanking Ryan for his bravery and sharing their own story in the comments section.

For our programs team, the pandemic also meant quick action. Generation Lyme, a Project Lyme initiative, made the transition to virtual service almost immediately. Generation Lyme traditionally hosts in-person support meetups on a month-to-month basis, but since the pandemic hit they began hosting three virtual Zoom meetups per week. Project Lyme’s capacity for direct service and support has exploded since moving to virtual platforms, with less liability and other costs associated with it. Generation Lyme expects to serve 1,200 individuals this year.

Project Lyme is a prime example of how adversity must be met head on. The COVID-19 pandemic has altered the fabric of the non-profit industry, yet we found a way to continue to meet our mission. Not only are we thankful to our community for continuing to support and engage with our content but we encourage other nonprofits to reassess how they view their structure and achieve their goals. Moving forward, our organization will continue to think critically about how we can produce content, and engage with Lyme patients to help them live their healthiest lives.

Noah Johnston is the Administrative Director of Project Lyme, a 501(c)(3) based in New York City that focuses on mission critical investments in research, advocacy, education and awareness for Lyme disease and related tick-borne illnesses.

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United tried to block me from carrying daughter’s meds on plane

United tried to block me from carrying daughter’s meds on plane

A Westchester mom said United refused to allow her to board a flight with a carry-on bag full of medical supplies for her chronically ill 22-year-old daughter — and even warned her not to “mess” with the flight crew.

Jill Levy-Fisch of Tarrytown said she and her daughter Sara, who suffers from a host of medical problems, were scheduled to fly from Newark to Halifax in Canada for vacation on June 28.

“Sara suffers from a severe illness that requires constant access to her medications, many administered through her chest port that must be temperature controlled,” she told The Post.

“The bag has a tag clearly indicating medical equipment,” said Levy-Fisch, 54, adding that her family has flown the route often with United, whose flight attendants have always allowed her to stow the bag in a closet.

Levy-Fisch said she had called the United disabilities line and was assured that the medical equipment could not be banned from the cabin.

But she said a gate agent insisted that the bag be checked in for the baggage hold — telling her that she had to remove any medications she needed from the bag if she wanted to bring them into the cabin.

“We told him he’d be checking an empty bag because it only contained medications. We asked to speak with a gate supervisor and he claimed to be one himself,” she said. “He was belligerent, abusive and disrespectful. We asked to speak with a flight attendant.”

The distraught woman said that after the agent accompanied her to the regional jet’s door, berating her along the way, a flight attendant said: “You do not want to mess with this crew.”

“We were shocked, upset and brought to tears. He said we couldn’t bring the medical bag on the plane,” Levy-Fisch said, adding that she had to board without her daughter because some medications were already in Canada and she needed to pick them up from where they were being stored.

Among other ailments, Sara suffers from autoimmune encephalitis, Lyme disease and postural orthostatic tachycardia syndrome, or POTS, a condition in which too little blood returns to the heart while standing up, Levy-Fisch said.

Sara’s carry-on bag contained 30 vials of IV medications, an IV pump, bags of saline, various medications, syringes, a glucose monitor and a sleep apnea device, the mom said.

“She left in tears. This was to be a fun family vacation and she didn’t deserve the treatment she received,” Levy-Fisch said of Sara, who ended up taking a Delta flight the next day.

“Once I boarded the plane, I sat quietly crying,” she added. “The flight attendant approached me to say the pilot wanted to know if I planned to ‘behave’ on the flight.

“I was afraid to say anything as I needed to get the medications at our destination and was concerned they would remove me from the plane.”

Levy-Fisch said she messaged United through Facebook prior to takeoff and was asked to get the flight attendant’s name — no easy task, she said, because he apparently hid his name badge.

Eventually, he relented and gave her his first name — Carlos, she said.

Levy-Fisch, president of the Save Babies Through Screening Foundation, said the airline refunded her daughter’s ticket, but she wanted “to ensure that such unprofessional, demeaning behavior never happens again to another person traveling on United with a disability.”

United spokeswoman Maddie King blamed the debacle on the size of the regional aircraft, which she said has smaller overhead bins that can’t fit larger bags.

“Because of this, there was no space onboard the aircraft to stow this customer’s bag, and it would only fit checked underneath the aircraft,” King told The Post.

But Levy-Fisch said she and her daughter were the first to board, “so they can’t say there wasn’t room in the closet.”

King added: “We reached out to apologize to our customer for this experience, and we refunded her ticket for the flight as a gesture of goodwill,” she said.

“We’ve also reached out to our partners at Express Jet, who operated the flight, and our team in Newark to review the way this situation was handled.”

In a statement, Express Jet rep Jarek Beem said: “We have also reviewed this flight with our crew members and apologize for any disruptions to our customers’ travel plans.”

Source: New York Post

 

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