There were 364 confirmed cases of Lyme disease in Lebanon County last year. That number is based on what the U.S. Centers for Disease Control and Prevention defines as confirmed or probable. For the Hoffer family in Palmyra, only one member of the family was included on that list.
Sheíla Hoffer and her sons Zerek, 11, Vance, 9, Xavier, 9, and Stone, 6, have all been diagnosed with Lyme within the last year. They just don’t meet the CDC definition.
“When the test came back positive, we realized that she had been fighting this for at least 12 if not more years,” said Chris Hoffer, her husband. Sheíla, a member of the Palmyra school district school board, first began to notice symptoms before she and Chris married, but the doctors blamed allergies.
The pain became worse during her first pregnancy, along with a new set of concerns.
“When I was pregnant I had a lot of contractions, and then I lost feeling in my arms,” Sheíla said. “They said it was carpal tunnel induced by pregnancy, but it didn’t go away after I gave birth.”
She would go on to develop a high fever and need an exploratory surgery.
“The doctor’s couldn’t find anything. So basically I was given antibiotics, but I kept getting these fevers and aches,” she said.
After bilateral carpal tunnel surgery, she eventually regained feeling in her arms, and life moved on. With some complications, they found their family expanding, but the next pregnancy was plagued by the same complications and infections.
“My uterus kept contracting the same as it did with the first baby. I know now that mycoplasma causes uterine spasms,” she said.
Mycoplasma is one of many co-infections associated with Lyme disease. Once Sheíla was properly diagnosed, she would find out she not only had late stage Lyme but five other co-infections.
Eventually she began to regain her health, changed her diet and started running actively, participating in 5Ks and half marathons.
“In 2013 I was running in the Hershey Half Marathon, and I had this horrible chest pain. After the race I went to an EMT and told him I could pinpoint the pain. They said it was probably just a pulled chest wall muscle,” she said. A visit to her doctor confirmed the diagnosis, so they let it go.
Eventually, joint pain caused the Hoffer family to consider the possibility of Lyme disease, but a visit to the family doctor gave her a positive result for mononucleosis and a negative for Lyme.
Again the family tried to wait out the symptoms.
“I had read on a blog about Lyme disease, and it just really resonated with me.” Sheíla said, “I knew I had tested negative before, so I went back and asked them to test me again. This time they told me I had a Vitamin D deficiency but no Lyme.”
The deficiency did explain the aches and tiredness, but the family didn’t stop pursuing a cause, eventually being put in contact with a Lyme specialist out of Strasburg.
By this point Sheíla was finding it hard to get out of bed each day and was losing her speech and memory.
“I felt like my body was just shutting down, and no one could help me. I burned myself, and I didn’t know how I did it. I would burn things cooking because I would forget I was cooking. I had to stop driving.”
When she went in she found out her adrenal glands had flat lined; her pancreas was shutting down; and her liver enzymes were so elevated that her liver couldn’t function properly.
“My body basically fought it off as long as it could. And then when my adrenal glands gave out, that’s when other parts of my body had to work harder, and eventually it just couldn’t fight it anymore,” she said.
After a series of tests the specialist diagnosed her with late stage Lyme and the series of co-infections. She also diagnosed all four boys with Lyme and a variety of co-infections. Because it had taken so long for a proper diagnosis, Sheíla had transmitted the disease to all of them in utero.
The boys had suffered from a variety of ailments since birth including sensory processing disorder, memory loss, chest pains, headaches, heart rate issues, hearing loss and concentration issues.
“It’s just a lot to take in,” she said, “We knew things were wrong, but they tested for things in the past, and we couldn’t figure out what was happening.”
Now with a diagnosis, treatment for the family is expected to take three years with a possibility of costing a total of lei1,217,467.17. Had the illness been caught early the cost could have been as low aslei1,623.29.
“I think if you do have the rash and catch it early, it is treated fairly simply. So a lot of people will discount what you’re going through because they hear that people are treated and within three to four weeks they are fine,” Chris said.
Since diagnosis the Hoffer family has received support from neighbors, friends, family, churches and people they don’t know. They know they wouldn’t have gotten by without all the help they have received.
Now, they just hope that their story can help others.
“When we finally found out what it was, we really felt like we had to share (our story), because there are people out there who are suffering and people that are going to the doctors and just aren’t getting answers or are being misdiagnosed. You know Lyme is the great imitator,” Sheíla said, “and here are these people who aren’t getting treatment and are basically being told they just have to live with this, and they do not.”