This story was originally published by the Bay Area Lyme Foundation.
Middlesex County, MA
Infected: 1998
Diagnosed: 2009
Current health: “finally on the mend”
Enid Haller is Executive Director of Lyme Center of Martha’s Vineyard, a free walk-in information service for Lyme and tick-borne diseases, and has run the Martha’s Vineyard Lyme Support Group since 2010. Dr. Haller holds a PhD in Clinical Psychology and a Masters in Social Work and is a New York state-licensed clinical social worker.
Dr. Haller suffered for at least ten years before finally being diagnosed with Lyme disease and Babesiosis in 2009. Her condition advanced deeply into the chronic phase and she accumulated a complex of afflictions including cataracts, hyperthyroidism, knee and heart issues, severe depression, anxiety, debilitating chronic neck pain, and brain fog. Her daughter and husband also became ill due to Lyme and assorted co-infections. Dr Haller, now on the mend, is dedicating her recovery to helping others recognize and get timely treatment for their tick-borne infections. Here, she shares her story, in an extract of a letter she wrote to Senator Blumenthal. You can read the full letter here.
“My name is Dr. Enid Haller and I have a story to tell …
“[In the late 1990s,] after never being sick a day in my life, I developed a cascade of serious physical ailments. In one year I was diagnosed with Graves Disease (thyroid), had eye surgery in both eyes, had knee surgery, breast reduction (to try and get rid of the chronic pain that had developed in my neck) and heart surgery. Physically and mentally exhausted all the time, I was falling apart and it made no sense. None of the many specialists I went to see tried to look at the whole picture or connect the dots. The situation was exhausting in itself and financially ruinous.
“I had cut work back to five hours a week and could barely manage that and was developing extreme anxiety and depression. Eventually, I couldn’t work at all and we were unable financially to remain in the city. Together with my husband, Sam, and nine year-old daughter Bean, I moved to Martha’s Vineyard where we had vacationed for many years.
“We rented a house in the woods that first year, in a tick-infested area. Every day we would pick ticks off ourselves and our animals and at night find them crawling in our beds. We thought nothing of it because no one had ever mentioned Lyme disease. We had no idea that if you don’t treat thoroughly right after you’ve been bitten by a tick, you are in serious danger of developing Chronic Lyme.
“The next two years was a descent into illness for all three of us, and no one could (or would) tell us what was wrong. Our Lyme tests all came back negative. I was sleeping 14 hours a day, Sam, had such brain-fog he couldn’t function, and Bean was doing poorly in school, not being able to comprehend her studies and feeling tired most of the time.
“Finally Bean just gave in and became bedridden right before her 11th birthday. She could not finish the last two weeks in school and seemed to get worse every day. They told us she had Mononucleosis and there was no treatment beyond rest in bed. She lay in bed all Summer and her personality just seemed to ebb away before my eyes. She could not get out of bed to play and couldn’t even have a decent conversation with me.
“When a friend then handed me the documentary film ‘Under Our Skin,’ she had a certain knowing look in her eyes mixed with pained sympathy. As I watched this movie, the tears began to roll down my cheeks. It illustrated all our symptoms so clearly, my fear and devastation was mixed with an odd current of relief, hope, and purpose. I knew something was very wrong, and now I had some guidelines to fix it.
“I went to our pediatrician here on Martha’s Vineyard and asked her to please use a more sensitive test for Lyme because Bean came back negative twice with the hospital’s Lyme test. My good friend Dr. Debbie Herverly who had been suffering from Chronic Lyme for over 20 years insisted on the IGenex Lab in Palo Alto, California, for reasons we later came to understand. The pediatrician reluctantly agreed to sign off on the Igenex test and the results came back in two weeks.
“Meanwhile, Bean was getting sicker by the day. With the results in her hand, the doctor firmly declared to my face, ‘Negative for Lyme.’ I asked, ‘Are you sure?’ She said, ‘Absolutely, yes!’ She had a funny look on her face and I requested a copy of the test for my own records and could she please send the results to two different places where we had pending appointments.
“She agreed to send the results to the Rheumatology Department at Childrens’ Hospital in Boston — her recommendation — but she would not to send the results to Dr. Charles Ray Jones — the only known Lyme-Literate Pediatrician in the world, working out of New Haven, Connecticut. She called him a “quack” and asserted the medical board (unspecified) was trying to take his license away. I assured her he was not a quack and asked if she had ever seen the movie, Under Our Skin? She said she had not and furthermore had no interest. It was then I knew, just knew deep down, she would be no help to Bean. I was shocked by the rigidity of her bearing and surprised by such a closed response, which I have never encountered in my life from any professional.
“I sent my copy of the IGenex test results to my doctor friend who knew about Lyme and she said the tests were ‘very positive’ for Lyme. She recommended we get Bean on Doxycycline as quickly as possible and keep her on until we see a Lyme-Literate doctor. She recommended Dr Jones. Bean improved immediately on Doxy, she was getting better before my eyes.
“We did fulfill the appointment at Children’s Hospital that week, while waiting to get in with Dr Jones. A doctor — a very confident senior Rheumatologist who was teaching a medical student — examined Bean quite thoroughly for an hour and said — from the perspective of arthritis — she seemed fine, no signs of Lyme disease. I showed the doctor the IGenex test and she said she had never seen one and did not know how to read it. The doctor said, ‘We really don’t know much about Chronic Lyme,’ which I am now, much later, able to assess as a sort-of-truth and a skillful way of dodging an unproductive conversation.
“After putting our name on the cancellation list with Dr Jones, we finally got an appointment. In the office, he looked at my daughter’s IGenex test, took a full history and made a thorough exam. After an hour and a half he said, ‘Your daughter does not have Mono, she has Chronic Lyme. And she has had it for at least two years.’
“I cannot tell you the relief felt being with Dr Jones and hearing his confident assessment. Finally, here was someone who could help us and seemed to understand what was going on. From that day forward, my daughters’ symptoms started going away. No more headaches, no more stomach aches, no more fatigue or nausea. It seemed like a miracle to me. Everything seemed to be reversing and her personality began to resurface. I could not believe how fast the four different antibiotics regimen that Dr Jones applied began to work. He also treated her for Babesia and Bartonella, two co-infections common with people in New England and on the Vineyard that no one had even tested her for.
“Now with Bean on the mend, it was time for my husband Sam and I to get tested for Lyme again — this time through the IGenex Lab. We sort of could and could not believe it when the results came back positive (note that at this time we are still pretty naive about Lyme). We immediately made an appointment with Dr. Richard Horowitz in Hyde Park, New York. He was able to see us quickly and we started to get better right away.
“Our story is unusual because we’ve been lucky. My close friend who knew everything about Chronic Lyme shared her knowledge with me every step of the way. I just did exactly what she said and we all started to get better. Bean was the first to recover, probably because of her age the relatively short time she had been infected. Sam has had complications with his gut and Candida, but in reviewing his symptoms he determined that his Lyme goes back to his earliest experiences on Martha’s Vineyard as a child and after sequential Summers in the Adirondacks. he was able to track his symptoms back to age 14 (1978) when he had Bell’s Palsy in his face and other neural, visual, and cognitive impairment episodes in middle-school in New Jersey.
“For myself, I think my first signs of Lyme appeared in the years leading up to 2005 when I was first diagnosed with hyperthyroidism. All those unexplained illnesses finally made sense. There is a complete sense of relief when you discover the mystery of your illness because then you experience a release from passive helplessness to a positive, proactive self-determination. Most people who discover this are unable to go to the proper Lyme-Literate doctor due because there aren’t enough of them nearby and because insurance often does not cover Lyme-Literate care. Additionally, since Lyme-Literate doctors have been forced to charge out-of-pocket, even those who have willing insurance coverage can’t afford the months of financial “float” before reimbursement. Lyme is full of horrific Catch-22 situations.
“It is impossible to sum up this experience. The systematic denial of Chronic Lyme is a black shame on our country and on the individuals still promoting the notion. Our response has been constructive, however. I have used my experience in psychology and background in group and family therapy to run the Martha’s Vineyard Lyme Support Group which meets monthly. The members of the Support Group have contributed immeasurably to my understanding and provided examples of courage and determination, and together we have developed a powerful knowledge resource that is helping Islanders every day.
“Since learning so much that can help others avoid the dangerous time-delays to treatment, we’ve opened the Martha’s Vineyard Lyme Center in our guest house here in West Tisbury and are handing out Lyme test kits and keeping office hours so that our Island neighbors (15,000 population of year-round residents on the Island) have spontaneous access to good and useful information for taking their health into their own hands. I am determined to help others recognize and get timely treatment for their tick-borne infections!”
