EAST LONGMEADOW – It took a lot of courage for local businesswoman and freelance writer Carleen Eve Fischer Hoffman to share her Lyme disease story in “The Waiting Room  – Invisible Voices of Lyme,” compiled by author Vicky Gould.

She didn’t know how opening up about her health struggle might affect her and her husbands lives.

“I was really afraid what would happen once the book came out and once my story was out there,” Fischer Hoffman shared. “Being a writer, I was drawn to doing it, but I was afraid to tell my story because I didn’t want to be judged by the people I am friends with, the people I do business with, or [people] that are my business contacts, my colleagues.” She also had concerns about  how opening up might affect her husband’s job and contacts.

But her experience dealing with 16 years of increasingly debilitating fatigue – which finally culminated in a 2017 diagnosis of both Epstein- Barr virus and Lyme disease led her contribute to the book.

“I’d been exposed [to Lyme] and didn’t realize it,” Fischer Hoffman told Reminder Publishing, adding she had probably been infected with the Borerelia bacterium that causes Lyme disease while hiking in Maine at some point in the past. “I’m hoping that by putting my story out there, it will give people some insight on the disease.”

Fischer Hoffman said she remembers seeing ticks on herself when hiking, “but they were never attached” and she never developed the telltale red bulls eye rash that is the gold-standard indicator of Lyme infection.

What she did develop was fatigue – and it kept getting worse as time went by.  “It was so debilitating and I became afraid to drive,” she admitted. Her primary care doctor tested her for myriad conditions – including Lyme – but found no conclusive answers. Even a sleep study didn’t find a cause for her crushing fatigue.

As her energy level continued to ebb, Fischer Hoffman said she pulled back from social and business commitments, withdrawing from the networking groups that helped fuel her businesses – she operates both an organizing consulting service as the Clutter Doctor and now also has a holistic healing practice – and resigning from the different boards she belonged to. At one point she said the fatigue became so severe she spent nearly all of her time in bed, and began questioning if she wanted to continue living that way. At her lowest point, a call to – and lengthy visit with – a therapist friend helped her craft a care plan that led her to a locally based naturopath who was able to provide tests and treatments that offered some relief for her fatigue. For the past two and a half years she has seen both another naturopath, based in West Hartford, and a local infectious disease specialist, and making slow but steady progress recovering here health.  “They don’t talk,” Fischer Hoffman said of her two doctors, “But both are very respectful of each other’s practices, and I’m very pleased with that.”

She added her Lyme disease diagnosis was eventually confirmed through the IgG Western Blot test, which detects antibodies to the Lyme bacterium that develop after the initial infection. Her Epstein Barr diagnosis, apparently, is a flare-up of exposure to the infection at some point in her past.

Fischer Hoffman admitted she was reluctant to share how dark her situation became when writing about her Lyme journey for Gould’s book, but in reading the compilation of stories from “teenagers to retired people,” in the finished product, found she was not alone in “getting to a dark place” with the disease.

In sharing her story with Reminder Publishing, Fischer Hoffman said she decided to come forward now because she “feels there are other people out there who are suffering [with undiagnosed Lyme disease] and there are other avenues they have to take, and to keep pushing to get a proper diagnosis.

“Don’t let the doctor say there is nothing wrong with you when you know in your heart and feel in your body that something is not right,” she stressed, adding that though her symptoms have been primarily fatigue and musculoskeletal pain, others may have symptoms that mimic other conditions. “I think I’m really lucky, though while I am suffering, there are people who are much worse,” she said, noting some sufferers have crippling symptoms.  She also noted that she feels fortunate she and her husband are in a position to be able to access naturopathic treatment for her condition, which is not covered by insurance.

With outdoor recreation season approaching, Fischer Hoffman sounded the tick bite prevention alarm, hoping to prevent others from enduring the issues she now copes with. She stressed that individuals should always use insect repellant – it should contain DEET – before hiking or spending time outdoors in areas with wood or tall grass, both favorite hiding places for ticks. Hikers should also wear long sleeves and long pants and stay in the middle of trails to avoid tick exposure. Gear should be treated with Permethrin, and be checked for ticks before stowing. Clothing should be put in a hot dryer for 10 minutes to kill any ticks, and individuals should do a full body tick check as soon as they come indoors. If you find a tick, she said you should remove it and save it for testing.

And, “if you are out and about and you come home and have the bulls eye mark, what you are supposed to do is call your doctor,” Fischer Hoffman said. “He is supposed to put you on an immediate antibiotic, which can wipe out the Lyme.”

And if you know someone who is suffering lingering effects of Lyme disease, let them know you are there to support them. She said a phone call  or  even a quick text – “It doesn’t have to be much,” she said – can help. So can offers to help with errands, cleaning or meals for those suffering as she has.

And in the end Fischer Hoffman said she is happy she decided to tell her story in the book.

“I’m glad I participated in it,” she said. “I feel its a valuable tool, not to help people get better, but to let them know other people are in the same boat.”    

“The Waiting Room  – Invisible Voices of Lyme” by Vicki Gould, which includes Fisher Hoffman’s complete Lyme disease story, is available on Amazon.