Treatments Limited for Neuropathic Pain with Rare Cause
Jefferson Nunn’s extremities were burning. He was losing weight rapidly and throwing up after eating. Even drinking water was agony.
Jefferson, 49, and his family had moved from Colorado to Plano, Texas, in June of 2017, when he began working from home as a consultant. Soon after, he noticed he was often fatigued, his stomach hurt, his feet felt like he was walking on needles, and he was losing weight. Slowly, his symptoms got worse and worse. Doctors could not figure out what was wrong.
“One doctor literally said straight to my face, ‘I think you’re making this up. You need to see a psychiatrist because there’s something wrong with you,’” Jefferson remembers.
Two separate doctors did not believe him, and as Jefferson continued to advocate for answers as to what was wrong with him, those doctors removed him from their practice. “The entire time, I’m going on a downward spiral,” he says. “It’s one of those, ‘And then it gets worse’ type stories.”
After months of unexplained symptoms, Jefferson had a stroke. He was 45. At the time, a CAT scan didn’t pick up on what had happened, and he was prescribed medication for head pain. It wasn’t until a year later that a neurologist discovered he’d had a stroke.
But learning about his stroke did not fully explain Jefferson’s other symptoms. He began to hunt online for an answer or diagnosis, searching for mysterious and unknown diseases. In a forum, someone recommended a mold test for the home.
A home test ordered online yielded nothing, but when Jefferson hired a professional mold inspector, they discovered 10 types of mold growing behind the walls of his house. It was growing on the copper pipes; it was growing on the sheetrock.
“When mold grows on something, it eats a little bit of that thing, whatever it is. So, for example, if it is a copper pipe, when it releases spores, you’re also ingesting that,” he says. “In a human, when mold gets into the body, it gets into everything. It gave me a stroke. It’s what started everything.”
Around that time, Jefferson paid out of pocket for blood and urine tests that confirmed that in addition to being present in his home, the mold also had affected his body. At that point, he had been searching for answers for two years.
FINALLY AN ANSWER, BUT THE PROBLEMS LINGER
There are three key things a person should do once exposed to a mold infestation, Jefferson says: clean air, clean food, and clean water. “If you can’t get out of the mold, get a really good air filter, get an N95 mask and don’t ever take it off,” he says. Jefferson began to improve, but some of the effects, including neuropathic pain, didn’t go away, and his natural energy did not return.
He ended up in a long legal battle with his landlord, who did not believe the mold was present in the home or harmful, and his family eventually left the property. His wife and children had not spent as much time in Jefferson’s home office, where the mold was most prevalent, but they experienced frequent nosebleeds that stopped when the family moved to a new home. Jefferson says that his wife, Miki Nunn, has been very supportive through the process of trying to manage his pain.
But for Jefferson, the damage was done, even after the move away from what he calls the “mold house.” A once avid hiker, he now battles to take 2,000 steps a day.
“I just went to a birthday party for my son,” he shares. “I put the tables out, and spent the day outside. I did not really do anything strenuous; put the tables back in and came inside. The next day, I’m like, ‘God, kill me please.’ It literally feels like that.”
He calls it “hellfire.” He deals with constant, 24/7 fire, burning, and needles in his extremities. There are days he cannot walk. Other times he cannot hold his two sons, Edward, 10, and Andrew, 6. “All I can do is lay in bed,” Jefferson says. “When my oldest turned 5 years old, his birthday wish was that I would be out of pain. I mean, he’s wishing for me, not for himself, which is heartbreaking.”
But Jefferson is not giving up. He actively researches cures and treatments, stays updated on new studies, and participates in forums for biotoxins and long-COVID, which carries similar long-term symptoms.
“I did a lot of studying and researching to try to understand [what is happening] to me,” he says. This led him to try a wide range of treatment modalities. He has tried ketamine infusions (which helped about 30%, he estimates), various medications and ointments (his current pregabalin prescription has taken his pain from a 9 or 10 to a 3 or 4), and even went to Mexico for stem-cell therapy (which gave him more energy).
The stem-cell therapy cost $10,000, a fee Jefferson’s father kindly paid. “It’s a wondrous, wondrous thing,” Jefferson says about stem-cell therapy. “It’s not a miracle cure, but it’s another treatment and another path to repairing the damage caused to the body.”
There was nothing he wouldn’t try, if the research backed it up—he’s tried Chinese medicine, hyperbaric oxygen, supplements, and more, although many of the modalities he sought out didn’t help. He’s often frustrated by the limited process and treatment pathways for neuropathic pain. “You go to your primary care doctor, they say, ‘Oh, you’re in pain. Go see a pain management specialist.’ You go there, but unless you’re broken, like physically broken, they’re not going to help you. You go back to your primary care again, and they now say, ‘See a rheumatologist.’ But that rheumatologist no longer treats [your condition].” It is an endless cat-and-mouse game with no end, answers, or relief.
CONTINUING THE HUNT FOR RELIEF
Jefferson is currently trying to find a doctor who will treat him because his primary care provider retired, and he soon will need to refill his current prescriptions. “If I run out of [my medication], it carries the black box warning for a reason,” he says. “If I miss one dose, I’m in a lot of pain. I miss two doses? I’m in bed. When I miss multiple doses, I’m going to the ER.”
It took a pain management specialist an entire day of making calls to find Jefferson an appointment for someone who would continue his current treatment plan—in three months.
“If I had the tiniest heart problem, I’d be seeing a specialist tomorrow. If I break a bone? They got a whole pathway. But for this? My appointment is in [three months],” he says. “It’s an example of yet another battle. America is not that great with health care, especially for the amount we pay.”
He likens living with nerve pain to having a new body. Everything is different, and he has to learn his new limitations and obstacles. And while some things are improving, he cannot compare his new body to his old one.
“There is hope,” he says. “There is help. You’re probably going to have to ask for that help in a different way than you’re used to asking for help, you know, be it through a rent-a-doctor, through a stem cell clinic in Mexico, whatever works—find a particular path to go on and keep at it until it works.”
“If I had the tiniest heart problem, I’d be seeing a specialist tomorrow. If I break a bone? They got a whole pathway. But for this? My appointment is in [three months].”