Tracey Berkowitz of Livingston always wanted to write a book but admits she really had no story to tell.
That all changed seven years ago when her story hit her right in her gut, literally, when a misdiagnosis of a parasite sickened her for more than a year and changed her life, surprisingly for the better. In her recently published book, “Not My Buddy- A Woman, A Dog And Their Journey Toward Healing,” Berkowitz shares her experience in a non-fiction, inspirational memoir.
Berkowitz, 44, established her own press company, Gemini Press, and self-published and released her first book June 16. The 244 page book is available in paperback for $19.95 at the local Barnes & Noble bookstore in Livingston, where she recently had her first book signing on June 18. The book is also available for $9.99 as an e-book online through Amazon and Barnes & Noble.
“I always had the dream of writing a book but I had no story,” says Berkowitz. “I just didn’t have a story; joke is, he handed me a story.”
Berkowitz’s story began seven years ago, in May 2008, two days after she brought home a new golden retriever, Buddy. She knew the puppy was being treated for a parasite called giardia, and was on an antibiotic for three months. But two days after she brought him home, she also got sick and wound up in the emergency room a week later because she did not have a bowel movement.
“My stomach was so descended,” she describes. It was at that point that she was diagnosed with exhaustion, a condition caused from a change of routine.
“I was a major runner,” she describes, but when her runs stopped for one week, and she was taking Advil for headaches, her stool backed up “and one thing led to another. One action spiraled up to the next.” The doctor put her on a laxative. She was admitted to the hospital, received three enemas until it worked.”
Her temporary fix, however, worsened and by October she was facing other symptoms along with the constipation including weight gain, hair loss, achy joints, inability to digest certain foods, fatigue and even pain when she blinked.
“Constipation and fatigue was the worst,” says Berkowitz, who was working part-time as pre-school teacher. “I became the non-existent mother, wife, friend.” A mother of two twin girls at that time who were turning eight, Berkowitz says she spent most of her time sleeping in her bedroom or at the doctor. “I pretty much disappeared from my life.”
After five years of diagnosis and treatment, Berkowitz had seen 16 different health care specialists, spent more than $80,000 out of pocket in medical bills and had to take 132 pills a day.
She was diagnosed with Chronic Giardiasis in Aug. 2009, after suffering for 15 months, which led to extreme chronic fatigue, extreme constipation, hormonal imbalances and a drastic weight gain of 40 pounds. A rectal swab, or scraping of the anus walls, came back positive for the parasite.
She had suggested to the doctors early on that she may have had giardiasis, the same parasite that her dog had, but after several stool tests came back negative, her self-diagnosis was ruled out. It was suggested that humans do not get the virus, and if they did they would have the opposite symptoms which include diarrhea and weight loss.
But for Berkowitz, her body responded the opposite because she says “I just ran a half marathon, was training for five months prior; I was a size two” so her body had no ability to fight off the parasite. Over-exercising caused her to compromise her immune system.
“I’d exercise when I was sick; my body did not have time to rest,” she says. When she was training for the half marathon, she had a sinus infection, was on antibiotics, ran in the rain and ended up with pink eye. I was on a mission and nothing was going to stop me. I took it [exercise] to the extreme.”
She must have gotten it from cleaning up after the dog’s stool and “it got into my system.” People can also get the parasite from unfiltered water.
“Doctors are not aware,” she says, because there is “not enough information on these parasites. Whatever is written up on this is not enough,” she says. The doctors “were trying to do what they could with what they knew. It’s a shame I had gone this long without the diagnosis.”
Being sick with the parasite has had lingering effects for Berkowitz who now faces food allergies to gluten, soy and dairy, and the need to take supplements. “It destroyed my digestive tract. I will have inflammation; I will get bloated, headache, exhausted or get the runs. It will go right through me; my fingers will swell instantly.” Stress, gluten and sugar can bring the symptoms back as Berkowitz experienced two years later when the parasite, that went dormant, returned.
Berkowitz was treated with antibiotics for five months to kill the parasite.
“It’s not an easy thing to kill,” she says. According to research by the CDC, 2.5 million cases of giardia are reported in the U.S. each year, with 20 percent chronically infected.
During her experience, Berkowitz had been writing in a journal as an emotional outlet. After showing her parents and friends what she had written, they were so intrigued that she decided to write her memoir. Within six months, her first draft was complete; and then after meeting an editor, her book was complete two and a half years later.
The purpose of her book is to raise awareness of this “mysterious” sickness and to inspire others to seek a correct diagnosis and insist that the “right tests be done.”
Berkowitz says, “I try to help them emotionally, physically.” She also gives them advice on the type of doctors to go to.
“It’s sad that people have to waste so much money,” says Berkowitz in trying to find a cure. “It takes over their life and vitality.”
In her book, “I share with them my experience; I shared my emotion,” she says. Unlike cancer survivors who have support groups, survivors of rare illnesses are alone. “People start to think you are crazy,” says Berkowitz. “You start to think you are crazy.” The truth is, “this is a condition; it’s everywhere.”
Berkowitz recommends her books to anyone who loves dogs; any women who think they are living a “picture perfect life;” anyone trying to fund inspiration; anyone suffering from a chronic condition, serious illness or parasite; as well as anyone who is struggling in their marriage as a wife or as a mother.
Despite her suffering, Berkowitz says her experience “was a gift. It gave me the life I wanted.”
Before she got sick, everything was about “having a picture perfect life, picture perfect body.” This all changed when the parasite brought on 40 pounds. It “brought out me being the real me inside,” she explains. “I’m the real me. Sometimes we don’t want what’s handed to us, the life lessons you get from the circumstances, you become much more of yourself- it’s like pulling away the layers of the onion.”
Grateful that her condition is not worse like lymes disease, lupus or multiple sclerosis, Berkowitz says, “If this is my only issue, so be it. I was worried I wasn’t going to live. To be 44 and start from scratch struggling to find who you are on the inside.”
There are eighth graders currently reading her book and “for these girls it shows them how to be authentic, how to be yourself. I’m so thrilled to show them life can be hard, everyone can be knocked down; it’s all about who you are on the inside. I’m so grateful I have this opportunity to share this message. I try to take care of myself the best I can, living with vitality and being authentic and connecting with people.”
Berkowitz also hopes to create a foundation to help others to make a difference to improve the environment, such as laws to test for giardia and e-coli in water, and rectal swab tests in emergency rooms rather than stool tests which are only 50 percent accurate and colonoscopy that does not detect this condition.