The story of Nancy Haney: honoring a life lost to misdiagnoses
Blog by Hayley Scarano
This story is in honor of Nancy Haney, and her son Sean, as survived by husband and father David Haney. With a PhD in biochemistry and years of research and industry experience, David shares stories as their caregiver, getting the word out to counter unawareness in the traditional medical community. See the full interview with David on the Bay Area Lyme Foundation spotlight series here.
Nancy Haney was a widely respected and adored physical therapy lead at Children’s Hospital San Diego, as well as a devoted wife to her husband David, and mother to their two boys. The first time Nancy’s health was dismissed was in 2016, when she saw her primary care physician because she was losing her hair. They told her it was nothing, just aging, and sent her on her way. Nancy’s husband David, wasn’t so quick to dismiss it and started doing his own research. Eventually, he landed on Lyme disease, as many of her symptoms aligned. Nancy had spent time living in Connecticut, Massachusetts, Wisconsin and Seattle, four hotbeds for Lyme and tick-borne disease.
As San Diego is not a hotbed for Lyme, most physicians say it doesn’t exist there and refuse to test for it. They often don’t even accept positive tests taken elsewhere. Nancy had a comprehensive tick-borne test at 2 laboratories, and it was positive when her tremors began. Nancy decided to see a Parkinson’s expert. They performed a DAT scan and informed her that she had Parkinson’s. David questioned whether the tick-borne infection or the autoimmune effect of that infection could be a cause of the tremors. The doctor said, “No, she has Parkinson’s,” and dismissed them with Parkinson’s drugs. These drugs never worked for Nancy. Dissatisfied with the rejection of other ideas, they went to a different neurologist, unfamiliar with autoimmune diseases, who too said, “It’s Parkinsonism.” This prompted them to seek counsel from an autoimmune disease physician who concurred that it was either lupus and or Sjӧgren’s syndrome after testing.
In 2021, Nancy had a pleural effusion, where fluid filled the space between her lungs and the lung cavity. She had the fluid removed, and David asked the doctors to test it for tick-borne infections and autoimmune factors, or to send it to another doctor to do so. The doctor refused. At this time, Nancy started seeing a cardiologist, who David recalls was the only physician at the hospital who acknowledged Lyme as a serious concern – it’s noteworthy that the doctor was trained in Connecticut, where Lyme was discovered and therefore legitimized. He agreed with David that it was likely the Lyme causing her symptoms, but he wasn’t qualified to treat her for it. He referred them to an autoimmune specialist in Pittsburgh, who diagnosed Nancy with Lupus and Sjogren’s. They informed the doctor of her Lyme exposure, and he had no opinion. They took her diagnosis back to her rheumatologist in San Diego, who disagreed with the Lupus diagnosis, further delaying Nancy from getting the treatment she needed.
In the fall of 2023, Nancy started to have trouble swallowing, as well as mouth sores, a skin rash, and cognitive issues. The swallowing became such a problem that Nancy grew malnourished. They went to the hospital and presented her symptoms, many of which suggested she had shingles. Shingles stems from varicella-zoster, a dangerous herpesvirus, especially for people like Nancy who are immunocompromised. It often causes cognitive decline and strokes in people with autoimmune diseases. She should have been tested for this, but she wasn’t. Once again, they chalked it up to her Parkinson’s, despite David’s concern that she hadn’t responded to any Parkinson’s drug, therefore unlikely she had it at all. While Parkinson’s causes cognitive decline, untreated varicella-zoster causes it much faster.
From his research, David firmly believes that had she been treated for varicella-zoster, Nancy would have easily relearned to swallow on her own. Instead, she was set up with a speech therapist to help her relearn to swallow, and had a G-tube inserted so she could be fed. On January 1st, 2024, she suffered from aspiration pneumonia as a result of being unable to swallow. The pneumonia was resolving, but when she was at the hospital, she acquired a resistant Pseudomonas bacterium that the hospital did not know how to treat.
Nancy came home, but after several more physician appointments, was referred to a second hospital to treat the resistant Pseudomonas. They eventually put her on powerful antibiotics. Nancy grew sicker and weaker and lost her ability to speak. Her mouth became stuck open. She started to have edema everywhere, and also developed another fluid problem in her chest. After being admitted to the second hospital, they removed five liters of fluid from her lungs – it was remarkable that she was even breathing again. No one had any idea what caused the inability to speak or the mouth stuck open. Had the physicians investigated, they could have learned that a brain stem infection of varicella zoster can cause this. All the while, her rash had worsened. It was misdiagnosed time and time again. When David insisted that they do a punch biopsy on the rash, they finally discovered by PCR that it was varicella zoster, and after 10 months, they finally treated her for this serious viral infection.
The hospital physicians said that Nancy’s acute disease did not involve any autoimmune issues. David finally found a doctor in LA who specializes in autoimmune diseases. He looked at Nancy’s records online with had a video visit, said he was absolutely certain she was suffering from an autoimmune crisis.
During Nancy’s workup to discover the causes of her “crisis”, hospital physicians claimed Nancy may have cancer, but they did not want to do the tests to prove it. One doctor said she was 100% confident that Nancy had breast cancer and started treating it, until they concluded it might actually be a different type of cancer, which required a different treatment. David learned that long-term exposure to varicella-zoster could often lead to cancer, and grew angrier that this may have been the cause. Nancy’s oncologists pronounced Nancy too ill to be treated and also declared her acute illness to be unrelated to her cancer. They sent her home, and David slept on the floor next to her hospital bed, administering her feeding tubes and medications, her mouth still stuck open. Nurses, PTs, and OTs came to assist in her recovery.
One day, after a few bouts of becoming unresponsive and waking up to David’s CPR, Nancy didn’t wake up. David took her to the hospital, where they performed a CT scan of her brain and found a massive brain bleed or stroke, which they said she was unable to recover from. They turned off all of the equipment, and she died that day.
Medical research shows that a hemorrhagic stroke is a common side effect of varicella-zoster, as is cancer. While Nancy may not have died from Lyme disease, her constant misdiagnoses and her medical teams’ refusal to treat her systematically and holistically ultimately killed her. David explains that he thinks medicine has become too specialized, with each team working on such a specific issue that there is nearly no cross-functionality between the teams. Eventually, a patient will suffer. Their families suffer. Despite the many letters David wrote to Nancy’s medical teams, to the hospital boards, to anyone he could reach, there was no accountability taken.
At the time of her death in 2024, Nancy had survived her son, Sean Haney, who had passed away in 2021 due to heart complications from improper rituximab treatment for tick-borne disease complications. David survives them both, and wants to share their stories in hopes that another Lyme patient will be treated with proper care. Nancy donated her tissues to the Lyme Disease Biobank in order to help researchers prevent others from suffering. Sean donated tissues to tick-borne researchers. Nancy’s legacy lives on in the Nancy B. Haney Memorial Pediatric Physical Therapy Award at Rosalind Franklin University, Chicago, IL, and a Nancy B. Haney Endowed Fund physical therapy lectureship at Rady Children’s Hospital, the next hosted in San Diego, CA, this upcoming March. Sean is honored in an annual memorial symposium at Scripps Institution of Oceanography in San Diego, the 4th annual of which to be hosted next February.
