By Dr. Enid Haller
Back in September 2012 I wrote Senator Blumenthal because our story was interesting, relevant and unfortunately not rare. Those of us struck by Lyme needed to stand up and be heard in this unjust environment of disorienting denial of this harrowing disease. I felt his office was making a difference or at least they were focused in the right area, and I wanted to give him more data points to use.
Before Blumenthal joined the US Senate, as Connecticut's Attorney General, he launched an antitrust investigation into the Infectious Diseases Society of America’s (IDSA's) 2006 guidelines regarding the treatment of Lyme disease. His anti-trust challenge to the IDSA resulted in an audacious intransigence and no change to the published IDSA guidelines for the treatment of Lyme disease, demonstrating that the IDSA -- which hides behind this concept "science" without respecting it -- has no regulatory oversight. But the fight set a tone and highlighted the center of the problem: the IDSA's lobbying and ongoing publicity campaigns (backed by the CDC and NIH), supported by the fraudulent and misbegotten IDSA guidelines, is the source of disinformation about Lyme disease, the source of denial of Chronic Lyme, and a chief component of the faulty, truncated disease definition which is confusing medical doctors and **ruining the lives** (bankrupting, causing irreparable auto-immune problems, causing interruptions to work and school and income, deaths and suicides) of thousands of families in the United States.
A remedy to misinformation, misdiagnosis and underfunding will only be found if a strong challenge can be mounted in the future. I knew Blumenthal, as a US Senator from Connecticut, was taking the Chronic Lyme injustice to Washington, and I wanted to help strengthen his voice.
My Letter to Senator Bloomingthal
My name is Dr. Enid Haller and I have a story to tell.
I was born in a small town in Pennsylvania in 1960 with Attention-Deficit Hyperactivity Disorder. Back then, no one knew what it was or how to treat it. I was one of the earliest kids to be put on the drug Ritalin and soon became dependent on it. Certainly the doctors didn’t understand ADHD, but the teachers didn’t either — to say nothing of parents. I got the impression I was stupid and thought it would be impossible to ever excel in an academic setting. I got little encouragement in school and soon realized I had to come up with my own strategies to get by.
Like most ADHD kids, I didn’t fit the school system very well. We learn differently, get bad grades and the situation makes it look like we’re not trying. No appearance is ever so misleading. I went on to study acting in college, a less academically rigorous course, and did well because it was geared more to my learning style. After graduation I moved to New York City. I was a working actress and model in the city for 8 years until I realized I was a functioning drug addict, addicted to prescription drugs and cocaine.
Recognizing the trap that had been set for me, I finally got into therapy and set a course that would change my life forever. I got clean from any substances and, with the help of my therapist, transformed my life. I was re-born you might say. I was happy to finally not be self-destructive any longer, and I was determined to help others to do the same. I realized that I had formed a wrong opinion of myself growing up. This doesn’t happen on its own, but back then if you didn’t fit in you were ostracized.
In 1990, at age 30, I decided to go back to graduate school and study social work. I easily got my Masters in Social Work degree (“MSW”) from Fordham University because, again, the program was geared to my type of learning. I starting working with patients with addiction problems, and soon realized there seemed to be a connection between ADHD and addictions because in other people’s experiences I recognized my own story of self-medicating.
I decided that this was what I wanted to study at greater depth, so I started to look into PhD programs in clinical psychology. I soon realized that the traditional graduate psychology programs were highly structured and strictly geared to the rigid type of learning I had experienced in grade school and high school. I then looked into alternative programs and found a wonderful school called Union Institute. They would allow me to structure my own program yet still be able to fulfill the APA requirements for Clinical Psychology. I was overjoyed and the experience was wonderful. They accepted my social work masters degree where the other psych programs would not, so I was able to finish the Union doctoral program in a reasonable amount of time, by 1997. My doctoral dissertation is on ADHD and addiction.
It took a few years but soon after I had achieved the degree the same professors and addiction specialists who had asserted that there was no correlation between these two disorders were now recognizing the truth. This was when I learned to trust my instincts.
That year I opened Behavioral Arts in Manhattan, a mental health clinic dedicated to helping children and adults with ADD and ADHD and help them to avoid medication as a first course of treatment (without rigidly ruling it out). After interviewing hundreds of alternative psychotherapists who shared my concern for over-medication, I started this clinic because I saw too many patients taking 8, 9 and 10 different kinds of medications at one time, prescribed by many different doctors, and half the doctors were ignorant the patients were on these other drugs. I saw children as young as two years old being prescribed Ritalin after a 10-minute interview.
Managed Care had arrived, and the model seemed organized to put all the privately owned clinics in Manhattan out of business. Most of my professional friends’ practices went under; the others were lucky to absorbed into hospital settings. As for Behavioral Arts we hung on for five years. When we closed our doors in 2002, the insurance companies owed us a half a million dollars. Every month they would change the codes and deny benefits to our clients who we kept seeing and for whom we offered an out-of-pocket sliding scale to fit their income.
It was scary to watch. I had caught the tail end of the golden era, as a social worker in beginning in 1992. We could bill insurance companies for work with patients and get reimbursed within a few weeks; it was like night and day, a difference between two worlds.
The patients suffered. I saw unlimited visits shrink to a limit of 20 per year and the paperwork expanded to a full time job, as if a form of persecution. I had to hire two people just to fight the insurance companies in their shifting parlor-game, and could not believe my eyes. At the end we tried to save the clinic by starting a nonprofit research wing called Behavioral Research, but it was too late. With therapists doing wonderful alternative work like neurofeedback, yoga and meditation, play therapy, family therapy, nutrition counseling, along with cognitive behavioral therapy, we had a 95% success rate while using no medication. The approach invoked all natural means of helping people learn how to heal themselves and keep themselves well. It was working.
Saddened that my dream was foiled, I reverted to private practice. A few years later, 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 found 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 — which at the time, we later learned, was performed through Imugen Lab. 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 Chronic 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 this 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 antibiotic regimen that Dr. Jones applied began to work so fast. 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 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 well, 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 bells 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 hyper-thyroidism. 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 near the West Tisbury Free Public Library, since its inception two years ago. 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.
Thank you for providing a forum for the truth to circulate.
West Tisbury, Massachusetts
Update On Our Health
My daughter Bean is 15 and a high school sophomore, feeling 100% and back to riding horses and doing well in school. My husband Sam is back working, photographing – and just got back to hiking -- and feeling well while working out his residual gut issues. My own health is now in my hands: I can control my energy level and performance when I maintain the diet, detox and immune support protocol that Dr Roni DeLuz customized for me. We are all success stories from Dr Richard Horowitz' practice and closed the gap after the aggressive antibiotics with the crucial help of Dr Roni, a naturopathic doctor, registered nurse and PhD -- and our saviour -- here on the Vineyard.