The great unknown
Jessica Wussow of Nelson was diagnosed with chronic Lyme disease in May 2013. For many, that diagnosis would have been devastating, but for Wussow, it was a relief.
“I actually felt relief that I finally had an answer,” she said. “After years of test after test, specialist after specialist and thousands of miles traveled, I now had an answer.”
Wussow started experiencing neck pain and headaches about four years earlier and sought medical help. Despite numerous tests, a cause could not be found.
As time went on, the symptoms worsened. She experienced muscle and joint pain, eye ulcers and one to three hemifacial spasms per day.
“It was just crazy,” Wussow said. “I had never even really been sick before. I was a very healthy person. And it was frustrating that no one could help me.”
Her Alexandria physician referred her to the University of Minnesota. For the next eight months, she underwent more tests, hundreds of labs and saw six different neurologists.
She was tested for Lyme disease, multiple sclerosis, amyotrophic lateral sclerosis (ALS), strokes…everything was negative.
She then heard about another doctor in Alexandria who may be able to help. Despite the fact that she had been tested for Lyme disease five times, including an invasive lumbar puncture test, and all five had come back negative, this doctor was confident she was suffering from chronic Lyme disease.
“I did a lot of research and found out that a lot of times the tests will show up negative if you’ve had it for more than a couple of months,” she said. “All of the signs and symptoms matched up. I really felt this was what I had, but so far, nothing confirmed that.”
Two more tests were done, and this time both were positive for Lyme disease.
FOCUS ON RECOVERY
Now that she had a diagnosis, Wussow could focus on the treatment.
In June 2013, she had a Hickman catheter inserted so she could begin intravenous antibiotic treatments, along with oral medications.
Six months went by and her condition only worsened. She contracted clostridium difficile (C. diff), a bacterium that can cause life-threatening inflammation of the colon, and intestinal candida, a yeast infection that often occurs in those with weakened immune systems.
“I would lie and cry or scream in pain, as it was so severe,” Wussow said.
She then heard about a doctor in southern Minnesota who specialized in Lyme disease. She was on a waiting list for four months before she got an appointment in December 2013.
By then, Wussow suffered from severe nerve damage in the arms and legs, mostly on the right side; weakness; numbness; memory loss; facial paralysis; pain; and headaches.
She had Jarisch-Herxheimer Reactions (herxing), which occur when injured or dead bacteria release toxins into the blood and tissues faster than the body can handle it, provoking a sudden, exaggerated inflammatory response.
She was diagnosed with multiple co-infections, two forms of pneumonia, and was suffering intestinal disorders from the heavy use of antibiotics.
Wussow and her doctor agreed on an aggressive treatment regime, which could be done at home.
She started with IVs of one drug three times a day, which took an hour and 15 minutes each time, another IV of one drug per day that took two hours, as well as more than 75 oral medications and supplements a day.
She travels to see her doctor once every four weeks, and has weekly phone appointments with her. She also has labs done once a week by a home health nurse.
After a few weeks, her joint and muscle pain and headaches lessened, but she had plenty of other problems to deal with.
She had fungus growing in her airway, which caused pain and at times left her gasping for breath, her liver counts were high, her muscles were weak, and her knees would buckle.
She continued this aggressive treatment for five weeks. In mid-February, it was stopped. The doctor determined Wussow’s body couldn’t handle any more IV antibiotic treatments and fixing the intestinal problems would have to become the main point of focus for now.
She’s on a new medication and supplement plan to fight the C. diff and candida and will be seeing an internal medicine doctor for further advisement.
She is also scheduled to see a cardiologist for some heart issues that have developed.
“As each day goes on after quitting all the IV meds, I get more sore and the arthritis worsens,” Wussow said. “I feel as though the Lyme is multiplying, since we are not able to attack it right now.”
There is no cure for chronic Lyme disease, so the focus is on minimizing and treating the symptoms. The longer a person goes untreated, the longer it takes to recover.
Wussow said it could take anywhere from one to five years or even more to get her symptoms under control and begin living a somewhat normal life again.
But the rest of her life will require lifestyle and diet changes. She is following a gluten, dairy and sugar-free diet, using as many organic, hormone-free products as she can.
FINANCIAL AND EMOTIONAL CHALLENGES
In January, Wussow had to quit her job as a program counselor working with adults with disabilities and mental illness.
The loss of income, along with the expenses of the treatments, most of which are not covered by insurance (see related pullout), has been debilitating for the family. In 2013, she had $12,000 of out-of-pocket medical expenses.
“We have so many outstanding medical bills,” she said. “It took thousands of dollars of tests and many cash-only doctors to get a proper diagnosis. Each week we pay hundreds to keep me going.
“I feel as though my life has been ripped away from me,” she added. “I have a good sense of humor, so that’s helped. Thank God that hasn’t left!”
Wussow’s husband, Steve, has been a great help with the treatments, as well as caring for the couple’s 10-year-old daughter, Kenna, and 8-year-old son, Brody.
“I have such a supportive and caring husband and would not be able to do this without him,” she said. “My children have been so wonderful and understanding that mommy can’t do the things she used to and one day it will be back to normal.”
A spaghetti feed/silent auction benefit will be held for Jessica (Leaunart) Wussow Saturday, March 8 from 1 to 6 p.m. at the Alexandria Elks Lodge, 115 15th Avenue West. Funds will help defray medical expenses to treat her chronic Lyme disease.
Donations can also be made online at www.gofundme.com/lymewarriorjess or sent to the Jessica Wussow Benefit Account at Gate City Bank, 1603 Broadway Street, Alexandria, MN 56308.
For information, call Kari Zimney at (320) 760-8511.