As Leah approached her late twenties she was, in her own words, a “tank.” She kept up with her ex-Marine husband’s work outs and ran every day. She was the picture of health and was proud of her strength.
After an uneventful pregnancy, the happy couple welcomed a baby girl in 2013. Little Harper was a new light in their lives. They began to build a new house and looked forward to their new home as a family of three.
In 2014, when her daughter was 8 months old, Leah was diagnosed with cervical cancer. Her OBGYN recommended a hysterectomy and Leah was alright with that. She wanted to make sure she was there for the child she already had first and foremost. She was referred to an oncologist who, remarking on her incredible health, told her a hysterectomy wasn’t necessary. She would only need surgery to remove the cancer
Shortly after she had recovered from her surgery the family moved into their newly built house. Shortly after that, Leah began to notice some things about her body. Sometimes her lymph nodes would swell, to the size of golf balls, and her hands would ache terribly. It was painful to button up her daughter’s onesies.
Leah brushed it all aside. She figured her body was still adjusting after having a baby. Her body, however, continued to react in unexpected ways that Leah couldn’t control. She often would experience tachycardia while sitting quietly with her baby. She was losing weight. Her husband, now a Federal Air Marshall, was concerned. She insisted she was fine.
Then the migraines started, bringing with them fevers and rashes. Leah went to the hospital and began a series of rigorous testing. She saw cardiologists and neurologists but didn’t find answers.
She woke up one night and found that her vision in her left eye was distorted. She could see only shadows, and everything was wavy. She had an intense pressure in her head and her joints ached. Her heart was pounding far too fast and she was hospitalized overnight until it settled. She still had no answers.
Leah was being plagued by more and more symptoms and with her husband out of town for work and a one and a half year old at home she was getting desperate for a solution. Her parents flew down and brought Leah and her daughter to New York. There, doctors feared she had MS but an MRI of her brain ruled it out. A blood test was ordered to check for Lyme disease and it came back positive! Leah was elated. She finally had an answer.
She began treatment for Lyme, meant to last three weeks. Then, three weeks turned into three months because Leah wasn’t getting better. She was breaking out into hives. Her tongue was swelling.
She couldn’t wrap her mind around it. She had never really been sick. She had pictured illness as something you took medicine for and then recovered from.
While she was undergoing Lyme treatment and trying to manage her body’s discomfort, she developed pain that suggested her cancer could have come back in her ovaries. She flew back to Florida to consult with her oncologist there. It turned out she had developed ovarian cysts and endometriosis but thankfully, not cancer.
She couldn’t thoroughly enjoy the relief because as soon as she had got settled back in her home, she took another turn for the worse.
Her doctor considered surgery to remove the cyst they found in her ovaries but didn’t think Leah was well enough for them to operate.
Leah, at this point, was on IV antibiotics and IV nutrients. Her symptoms continued to get worse and she figured the Lyme disease was just progressing aggressively. She was exhausted and was started on a b12 IV to boost her energy. Her body from the neck down broke out in a rash and became bloated. Her doctor told her that her body was just too sensitive.
In April 2016 her adrenals crashed. She was bedridden for months and had just a few foods that she could manage to eat without her throat beginning to close. Her husband, scared for her life, took a leave of absence. Her doctor told her he didn’t know how to treat her anymore.
Leah’s mother came down and told her that her doctor in New York wondered if there was an environmental factor to her illness, considering how much she had declined since going back to Florida. Maybe there was mold in her house. The family immediately called the builder who told them that there couldn’t be mold in that house, it was brand new. Leah headed back to New York anyway to be near her parents and her NY physicians.
She saw more doctors and experienced more symptoms. She was diagnosed with POTS and continued to suffer terrible migraines, getting hives if she took acetaminophen or Ibuprofen. Her only source of relief were long showers that her husband would carry her into, while trying not to let their daughter see how sick her mother was. A Lyme doctor pondered aloud if she might have MCAS since her body seemed unable to tolerate so much.
Leah began to realize the extent to which her environment took a toll on her. She noticed that she would react when certain foods were cooked, from the scents of soaps, and body sprays. She experienced nausea and vomiting, pain in her throat, and her lungs seizing up, in response to everyday things that were harmless to others.
She traveled to another physician in MA, who told her, definitively, that she had mold poisoning and multiple chemical sensitivities. The doctor found “sky high” levels of mold in her blood. Leah had her daughter tested too, and found evidence of mold in her blood as well.
Leah hired her own company to inspect their Florida home, regardless of what the builder had told her.
They found that the windows had not been installed properly, allowing rain and moisture to seep in.
The walls were filled with mold.
The family had been trying to sell it since their relocation to New York. They now had to pay for the home to cleaned and fixed. Once the mold was gone; they sold it at a loss.
By 2017 Leah was wearing a charcoal mask full time and had begun IV saline three times a week to help alleviate her tachycardia and because her pituitary gland was no longer producing the water retaining hormone, ADH.
She had been evaluated by a top neurologist at Cleveland Clinic and by top specialists at Harvard in Boston. She and her family had traveled to some of the top medical facilities in the country and even the NIH told Leah that she was too complex for them to take on. In Boston Leah was told she was too ill for her endometrioma to be removed, despite the pain of it rupturing every month, they could not operate until they could safely put a breathing tube down her throat.
Leah was soon told she had to get a full respirator since even when someone was cooking in another room her lungs would seize. If a package containing any scents or chemicals she was sensitive to was opened downstairs, she would have a reaction on another floor of the home.
She came across Dr. Afrin, a specialist in MCAS. He ran some tests and confirmed that, as the Lyme doctor had suspected, she was living with MCAS as well.
Leah was now wheelchair bound, with a respirator, on oxygen with special tubing, and receiving saline from special bags.
Dr. Afrin had Leah try a series of antihistamines, without fillers, but was she allergic to every one.
“Sometimes we thought one would work and then the second time I tried it my throat would close up,” said Leah.
They did find one steroid that calmed down her reactions but it had other side effects.
One night Leah went to the hospital with new, worrying, stroke-like symptoms. She was having trouble reading and kept messing up her words.
She underwent another MRI and a CT to make sure she wasn’t suffering a mini stroke. Every time she was in a hospital, however, she would get worse. She is surrounded by scents and chemicals from physicians and patients, from their laundry detergents to their hand sanitizer.
Leah wanted to get home as soon as possible, not only so she could be in a more controlled environment, but because her daughter, now five, watches when the ambulance takes her away. She went home that night but the next day, her specialist, now Dr. Afrin’s partner, told Leah that her body was shutting down.
Click here to read Part 2 of Leah’s story