The Wetzel Family Story
"Invasion of the Body Snatchers"
by Laura Zeller
For the Wetzel family of Germantown, Maryland, it all started 16 years ago on Memorial Day weekend 1992. The Wetzel family spent the weekend camping and hiking. After the weekend trip was over, Susan Wetzel discovered a very painful and large bull's-eye rash on her thigh. On the urging of a friend, she was promptly tested for Lyme disease. Her Lyme test came back negative, so she assumed it must have been a spider bite.
A couple weeks later, Susan came down with a terrible flu. The flu was so bad that she had hallucinations and remembers thinking "I've never felt pain like this in every cell of my body!" Because the flu came several weeks after she discovered the bulls-eye rash, she never connected her symptoms to infection from a tick bite.
At the time of her initial illness, Susan was nursing her newborn son. She would later learn that she was unknowingly passing tick borne diseases on to her son through her breast milk. Lyme disease can be transmitted from mother to child during pregnancy, and via breastfeeding. Women with known cases of Lyme disease must take aggressive pregnancy safe antibiotics during pregnancy, and are advised not to breastfeed. Susan was in the dark. She had no idea of the magnitude of the family health crisis that was brewing. She kicked up her heels, and went on with her life as usual.
After attending a March on Washington in July of the same year, Susan broke out in a bizarre rash on her thighs. Puzzled, Susan remembers that it appeared to be a cross between boils and shingles....incredibly painful! At the same time, Susan became very fatigued, and began having joint pain in her knees. Susan also had flu like symptoms whenever she exerted herself. After pushing her infant son around day after day in a stroller, her fatigue was unrelenting. Again, Susan never connected her symptoms to the original rash in May. She just didn't know anything about Lyme disease, or how serious it can become if left untreated.
Months dragged on into years, and Susan was having so many weird symptoms. None of her doctors could figure out why, and attributed her fatigue to the normal "tiredness" of being a busy Mom. Worried, Susan began a very restrictive diet and started taking a large assortment of supplements. The supplements seemed to help Susan's energy, and she felt well enough to move on with her life. Susan gave birth to her fourth child, and seemed to get past that awful phase in her life. Or so she thought.
The Wetzel family moved to a farmhouse in Martinsburg, West Virginia, an area loaded with ticks. Susan remembers pulling ticks off her self and her children on a regular basis. As the years went on, Susan began having more and more joint pain, especially in her knees. She thought the pain was from being pregnant and carrying kids around all the time. Susan had fulltime day care in her home, in addition to her own children, so she felt overwhelmed. Susan also began dealing with depression on a regular basis.
Over the next 7 years, Susan had three more children, unknowingly passing Lyme disease on to all of them. She saw doctor after doctor for what she describes as "weird and scary symptoms." Susan was not used to running out to see so many doctors. In fact, she disliked hospitals so much that she gave birth to most of her 7 children at home.
She felt forced to seek out the cause of her strange symptoms, and that meant more doctors, and more diagnoses. Susan received a whole bunch of different diagnoses, all of which were wrong. For her chronic knee pain, Susan's doctors wanted to perform surgery and "fix her up like new." Susan could barely walk, and her doctors insisted that surgery was the answer, even though they could not provide her with an answer as to why she has the pain and swelling in the first place.
Susan wasn't stupid; she knew she had to find out why she was having these symptoms, so she refused treatment via surgery. She thought "how do you treat something you don't understand?" It was totally illogical.
At that time, Susan's family was dealing with some huge life changes and traumatizing experiences. The stressful events seemed to be a catalyst for her untreated Lyme disease to rear its ugly head full force. As Susan explains "my Lyme went haywire, and spun out of control!"
The Wetzels decided to move to rural Gerrardstown, West Virginia, into a 200 year old farmhouse on 114 acres. It was a beautiful new home for the family, but again, it was located in a tick infested area.
Within two months of moving, Susan was admitted to the hospital for four days. She was so sick that she couldn't even move a finger and her heart began to flip flop. Doctors suspected that Susan had strep throat, but couldn't figure out why she had so much pain and weakness all over her body. Susan begged the doctors to figure out what was wrong with her. The hospital staff treated Susan like she might be crazy, and needed a break from raising 7 children. They thought she just needed to go home to her kids, and everything would be fine. Susan explains "wouldn't any Mom rather be home with her kids than in the hospital? It made no sense, I was sick, and desperate to find out what was doing this to me!" The doctors treating Susan didn't understand that she was truly afraid she was dying and she had some sort of mystery illness. Susan was discharged without an explanation, and left feeling worse off than when she arrived.
Around the same time that Susan was feeling so sick, she realized that some of her kids were not healthy either. Although they were all young, her children had been complaining of leg pain and weakness, tummy aches, and migraines. Susan knew something was terribly wrong because she had eliminated any and all possible allergy issues. Her children ate healthy and took supplements. The Pediatrician said it was growing pains. Susan knew that was a joke! She was raising enough children to know better than that! Mystified, Susan's children all seemed to be suffering in some fashion, some vague, some more severe. Neglected by the doctors, and confused by the situation, Susan and her family decided to just "cope" and try their best to be happy.
The Wetzels did their best to survive, but as time went on, this mysterious syndrome appeared to be affecting the entire family all at the same time. Susan's three year old was having terrible tummy aches. Susan remembers "he looked as though he was dying. He was so weak and gaunt looking, we all felt so lost, especially when all his tests came out negative." Around the same time, Susan's eight year old who had severe ADHD and symptoms of autism was having belly aches too. Susan's five year old was also severely ADHD and also autistic. The young boy could not read, or control his sound effects that came rolling out at the most unusual times. Many of her children were displaying volatile behavior, and acting extremely explosive as well.
Susan remembers "this all went on for a few years as I got more and more ill. It just seemed like a long and painful day that never seemed to end. We just tried to survive each day. I had so many symptoms by this time. One thing piled on top of another. My hands and arms were so numb and painful I could hardly eat with them or write. They said it was carpal tunnel syndrome; I had trouble breathing, as though I wasn't getting enough air. I had episodes where I would wake up with spots on my face that were severely swollen and painful for no apparent reason. I was choking all the time. Even at night on my own spit. I could barely walk anymore. I sometimes needed help just to walk to the bathroom. My legs and body were just so weak. Every cell in my body hurt ALL the time. At night and in the morning were the worst. My joints were swollen and terribly painful. My heart began beating hard and fast, or it would flip flop. I could no longer drive because my night vision was horrible. In fact, I couldn't handle the flicker of the TV, or flashing lights. It set me into horrible anxiety attacks. I could no longer talk without hesitation between words. I just couldn't find the right words. I couldn't read to my kids anymore. I just couldn't make sense of the words, I was confused and in a constant fog. I had severe motion sensitivities. If I was rocked in a rocking chair it felt like I was falling off a cliff. Everything from sound to noise to smells was exaggerated to incredible levels. My emotions as well were off the charts, and I cried all the time. I simply couldn't function at all anymore."
Desperate, Susan's husband Scott, who was sick himself, took her to a walk in clinic one day because he really thought Susan was dying. By this time, Susan had refused to see another doctor. The Wetzels had no insurance, and every diagnostic test, doctor visit and travel only made things worse financially and emotionally. Susan was fed up with all doctors because they always told her she was crazy and that she needed to see a psychiatrist.
Amazingly, the doctor at the walk in clinic was educated and experienced in tick borne disease. She knew that Susan had many of the classic Lyme disease symptoms. Eventually, Susan was diagnosed with chronic Lyme disease and much to her relief, she began treatment immediately. Susan went home, and got on the internet. She started reading about Lyme disease and soon realized that her entire family was experiencing a massive invasion of the body snatchers. And after realizing the extent of the invasion, and how poor the testing for tick-borne diseases is, she concluded that her entire family was probably infected. Susan's research on the internet helped her discover many treatment alternatives and they all began the long treatment road to recovery.
Three years later, Susan is fully functioning again. She doesn't have the daily pain and suffering that she had for so many years. Her kids are tremendously improved.
After Lyme disease treatment, her two autistic sons now display very little to no autistic traits whatsoever. All of her children are active and moving forward with their lives now. Although there are still times when they feel some symptoms, the Wetzel family is getting better every day. Susan explains "this disease has taken so much from our family. Yet, the Lord has guided us and our faith is stronger than ever. I know we will survive it and live full lives in spite of Lyme! It continues to be a huge part of our lives. The financial cost has been and continues to be huge. Even without the antibiotic cost that most chronic Lyme patients have, we have a ton of supplements and alternatives that cost an awful lot for a family of nine. My husband is seeking a new career due to the physical demands of his current career. He no longer has the strength to keep up physically. And he can't stop to get well. He just has to keep working, and try to juggle his health, home, and career as best he can."
Susan is an active member in the Lyme community now. It is heartbreaking for her to talk with so many people on a weekly basis that are so sick and have yet to be diagnosed. Susan believes it is a sin that so many doctors are so uneducated about Lyme disease and tick borne co-infections. Susan started her own small support group in the panhandle of West Virginia to help other people like her. She hears the same story time and time again. Susan is working hard to educate others, and pass out information about Lyme disease and Lyme literate MD's. Susan's goal is to empower people to help themselves since there are so few people out there to help all of us. She also wants to emphasize to everyone who is sick and suffering that there is hope! In closing, Susan remarks "a few years ago I never would have dreamed I'd have a full life again. But I do. I want to pass on that hope to other Lyme disease patients still in the midst of all the pain."
