Life is not about waiting for the storm to pass, but learning to dance in the rain.
I'm delighted and proud to share with you the astounding story of the Hausfeld family, from Lovettsville, Virginia. Karen Hausfeld was generous enough to share with me in great detail the story of her entire family's fight with Lyme disease. The realization that her entire family had Lyme disease came slowly, and in bits and pieces. Equally as shocking to Karen was the realization and acceptance of how incredibly long her entire family suffered before putting an end to the perplexing mystery.
Fifteen years ago, Karen's life was picture perfect. Happily married, and the mother of three small children, Karen had what she described as "boundless energy." Karen was always busy! She volunteered in community projects, was active in her school district and church, she telecommuted to work, and put herself through a difficult MBA program at night. Her passions included spending time with her family and friends, photography, gardening, taking care of her animals, and traveling.
Karen and her family were also generous enough to bring into their home four additional children: troubled teens that needed structure and a loving family. Needing extra space, the Hausfelds moved their family to rural Lovettsville, Virginia to a property with acreage where they had pastures for their horses, and created a little farm. The Hausfelds raised horses, alpacas, donkeys, goats, chickens, and were breeders of Newfoundland and Great Pyrenees dogs. Little did the Hausfelds know that their move to a tick-infested area would soon spell disaster for the one time happy-go-lucky family.
Loudoun County is one of the fastest growing and wealthiest counties in the nation. It also has been reported that it has the third-highest incidence of Lyme disease in the nation. With the new home and growing family, life seemed perfect, but their happiness was beginning to crumble, one family member at a time.
Over the past 15 years, Karen and her family have been dealt one hardship after another, with seemingly no end to suffering in sight. Mysterious symptoms have impacted her entire family and set off a chain reaction of medical drama.
Karen's symptoms began with overwhelming fatigue, depression, anxiety, asthma, irritable bowel syndrome (IBS), migraines, and a myriad of allergies. Because muscular dystrophy (MD) ran in her family, Karen suspected her symptoms were likely developing into that disease. She became concerned, however, when her symptoms increased and her migraines occurred more frequently. Karen also began having tremors and shakes, neurological symptoms inconsistent with MD. Karen's symptoms gradually progressed to feeling off-balance, running into objects, dizzy spells, memory loss andconfusion. One by one, Karen's joints began to deteriorate, and she required multiple surgeries to attempt to correct the damage.
Karen's overwhelming pain forced her to give up her volunteer work, and she became disabled. Karen's doctors were stumped. Although Karen suspected Lyme disease as a cause for her symptoms, she was tested for Lyme disease and believed it was ruled out. She saw many doctors, including a neurologist, none of whom had any idea what was wrong with her.
At the same time Karen became disabled, her son Tony woke up one morning complaining that his arm was numb. Within minutes his face was numb, and his speech became slurred. Karen and her husband Tim rushed Tony to the emergency room. By the time they arrived, Tony was unable to walk. Tony became completely paralyzed and had to be intubated and placed into a drug induced coma in order to perform an MRI.
Tony remained in the ICU, intubated and in a coma for a week while tests were run. Tony's doctors told Karen and Tim that "we've ruled out all of the easy stuff; all that's left is the hard stuff, the life threatening stuff, so you'll need to prepare yourself."
Fortunately, Tony began to respond to the doctors when they brought him out of the coma, and he was moved into the pediatric unit. What was Tony's diagnosis after all of this chaos? Tony's doctors explained "Tony had an allergic reaction to himself. Some form of autoimmune disorder like Lupus." Tony was continually tested by neurologists and his infectious disease "specialist", all of who found nothing wrong.
Tony had been previously diagnosed with a rare form of muscular dystrophy, but his symptoms did not seem to match that diagnosis. Tony was experiencing profound fatigue, as well as behavioral changes such as unprovoked rage and mood swings.
Overwhelmed and stressed out to the max, the Hausfelds did not know where to turn for help. Things quickly got even worse when Kelley, the Hausfelds’ youngest daughter, began displaying symptoms similar to Karen's. Kelley was becoming increasingly lethargic, and her knees became so swollen that she had to limp around the house. A former honor student with straight A's in school, Kelley was forced to take 3 F's in her classes because she had such poor attendance.
Unfortunately, the Hausfelds’ primary care doctor did not entertain the possibility that something as simple as tick bites could cause the entire family to fall ill. Kelley was diagnosed as depressed. A very strong young woman, Kelley had been through a series of traumatic events and her doctors blamed her symptoms on "post traumatic stress." Her Psychiatrist prescribed Kelley antidepressants so she could do her schoolwork at home because she was too exhausted to go to school.
Meanwhile, Tim Hausfeld was diagnosed with congestive heart failure. His cardiologist explained that a "virus" had attacked his heart and caused it, and that the "virus" might be Lyme disease. (Lyme disease is caused by a bacteria). Tim had heart palpitations, overwhelming fatigue and the same tremors in his hands and strange stabbing pains and joint pain that Karen, Tony, and Kelley had.
Christina, the Hausfelds’ oldest daughter, had only lived in Lovettsville for a year or so. She attended school overseas in Cyprus for a semester, and then finished high school at a private school in Connecticut. Ironically, Christina's school was close to Lyme, Connecticut.
Recently, Christina's small intestine collapsed, and telescoped into her large one, causing her unexplained abdominal pain. Christina has displayed symptoms of a host of mental ailments including ADHD, bipolar disorder, and OCD. She has been treated for all of these with medication and has failed to respond. Christina seems to have a weakened immune system and has been taken to the emergency room multiple times in recent months for her "mystery illness." Given her location and the high probability she was exposed to ticks, the Hausfelds are currently investigating whether Christina's diagnoses might actually be Lyme disease in disguise.
On the advice of a friend, Karen made an appointment with a Lyme Literate doctor. It took over a year to get her entire family appointments and office visits, but the guidance and careful examination of their LLMD proved to be life-saving. To make a long, extremely stressful and overwhelming story short, all five of the Hausfelds probably have Lyme disease.
Karen and Kelley both tested positive for multiple co-infections including Mycoplasma, Babesia, and Bartonella. Both of them began IV antibiotics via PICC line, and remain on antibiotics long-term.
Tony tested positive for Lyme, and received six weeks of IV treatment with Rocephin and has remained on oral antibiotics for almost 3 years. His recovery has been excellent, and he has since enrolled in college and is persuing a career in International relations.
Tim Hausfeld still has congestive heart failure, and Lyme disease is believed to be the cause. After being treated for Lyme, he was able to go back to work.
The sickest of the Hausfeld children, Kelley is still unable to do much. Her GPA seems to be reflecting her illness, rather than her academic performance. Kelley's Lyme disease has prevented her from enjoying all the things she loves to do. Kelley had to give up sports, at which she excelled. According to her Mom, Kelley sings like an angel and loves to play the guitar in her rock and roll band, but she has been too exhausted to do these things.
It has been hard for Kelley to gain understanding from teachers and other parents in her community. Fortunately, Kelley is now in a new school where the officials are much more understanding about Lyme disease. Kelley remains on long term oral antibiotics and, with her inner strength, has every hope for a full remission.
The financial impact of Lyme disease on the Hausfelds has been astronomical. Karen has not been able to work for three years. She currently takes seventeen prescription medications daily. Karen, Kelley and Tony are all still on antibiotics long term. Out-of-pocket expenses for doctors, prescriptions, medical testing, herbs, supplements and travel expenses are astounding.
Karen is currently waiting for approval for her fourth PICC line, and is fed up with her insurance company's refusal to authorize Lyme disease treatment. Karen believes that insurance companies and medical boards dictate her treatment, not the doctors who actually see the patients. She knows that her doctor's are afraid to prescribe her the additional antibiotic therapy she needs out of fear of prosecution and the whole Lyme disease conspiracy.
In addition, Karen believes that the Social Security Administration (SSA) is completely ignorant about Lyme disease and co-infections. According to Karen, the SSA insists that she can work full-time, therefore denying her disability benefits twice. Karen is outraged that nobody in the government is responding to the Lyme disease crisis, even after our own president, George W. Bush contracted the disease.
Despite the enormous complexity of her entire family being ill, Kathy explains "despite the lack of support from non Lyme-literate doctors, medical boards, insurance companies and the government, we still remember what we used to be like."
Karen believes that she was first exposed to tick-borne infections as a child. She played in fields and woods her entire life, and had been an outdoorsy person all her life. With all their animals and expansive property in a highly tick-infested area, the Hausfelds recognize how their lifestyle and dreams turned into a recipe for disaster. Riding horses bareback and running through pastures barefoot certainly could have easily exposed all of them to multiple tick bites. Most of them remember pulling ticks off themselves and their animals regularly.
The Hausfelds knew they weren't crazy. An entire family being sick all at once is not simply a coincidence. They took action, went to dozens of doctors, and struggled for years to find the cause of their illnesses. The fight began, first for their diagnoses, then to reclaim control over their lives.
Karen explains "Lyme took over my life, then my children's lives. My whole family was sick and it broke my heart. I have gained so much knowledge through my Lyme networks and support groups. I have started a whole new ministry of my own. I have pointed countless other suffering Lyme patients towards the correct diagnosis, treatment, and support resources. That's my gift, and God's gift to me. We have to learn to praise the God who gives, and takes away, knowing that He has a plan through all of it."
Two years ago the Hausfelds’ local newspaper featured a story where several local families in Loudoun County all had Lyme disease. It's a heart-rending story about the devastation wrought by Lyme on local families with Lyme. Karen Hausfeld's quote on the front page of the newspaper read, "I know this thing is eventually going to get me, but I can't let it make me a prisoner in my own home. I have to set an example for my children."
One of Karen's favorite quotes brings out the true loving, determined nature of what an amazing woman she is. "Life is not about waiting for the storm to pass, but learning to dance in the rain."
Karen has a message she wants to explain to everyone. She explains, "There are far too many of us sick for advanced Lyme not to be a reality. Before we got Lyme disease, most of us were type A personalities. We were super achievers! Now some days we can barely move. That's not all in our heads! People need to understand that the testing for tick borne disease is woefully inadequate. We need funds allocated for research to find better treatments and hopefully a cure. We deserve to be granted disability without such a fight. We need help with the financial impact this disease has, and we deserve a patient understanding of our limitations. We desperately need more Lyme-literate doctors. This country has to get out of denial about the Lyme disease epidemic. It is the next tsunami!"