Barbara’s Lyme Disease Journey

Barbara’s 3 sons during a family vacation

I was first diagnosed with Lyme disease in 1995.

After all of my family members and I experienced Lyme and co- infections (including our Golden Retrievers), I began doing extensive research on how diet and lifestyle changes could improve treatment outcomes of these diseases.

Diet Improved Our Lyme Symptoms

When we made certain changes in our diet and lifestyle we all saw improvements in our symptoms.

One of my sons said, “The only Lyme treatment that consistently helps is diet”.

By combining the evidence that supports these guidelines and personal experience of their effectiveness to reduce Lyme symptoms, I began offering Lyme disease nutrition, diet therapy and coaching to clients in my private practice.

Continue reading for the full story. ↓

My Lyme Disease Journey

My Lyme Disease Journey began in 1995 in Bridgewater, NJ. I was working at St. Barnabas Medical Center in the Joslin Diabetes Center and had two toddlers. We had recently moved and I was commuting 30 miles each way in heavy traffic.

I developed a sinus infection (first time in 34 years) and went on antibiotics. It recurred and I developed additional symptoms…fatigue, dizziness, weakness etc. Usually I would run up the stairs in our house, but it got to the point where I would have to take a break half way up the flight. I attributed these symptoms to stress…a working mother with toddlers in day care with a difficult commute. Then I started getting pain and tingling in my extremities.

When I had difficulty with word retrieval during presentations that I could do in my sleep and other issues with my memory, I realized something was seriously wrong.

Diagnosed With Lyme Disease

When I went to my family doctor he thought I either had Lupus or Lyme Disease. I knew what Lupus was, but had never before heard of Lyme Disease. The doctor said Lyme could be easily cured with 21 days of antibiotics. Knowing what I did about Lupus I hoped the tests would reveal that I had Lyme. Well I got my wish. My Western Blot came back CDC positive. But the 21 day treatment was thoroughly inadequate…designed for those recently bitten.

All my symptoms got worse and I developed new symptoms: severe pain in my feet and legs, insomnia, anxiety, headaches, pressure in my head and the strangest one …a winging scapula (this occurs from damage to the long thoracic nerve).

I soon learned that this was a Herxheimer (Jarisch-Herxheimer Reaction) reaction.

I Was Told It Was All in My Head

I went back to the doctor with my husband by my side. My husband is not one to get alarmed easily, but he was so concerned by the drastic change in me that he went for this visit. Despite my husband advocating for me, the doctor did not offer any additional advice or treatment and instead said it was all in my head and suggested that I see a psychiatrist!

The Lyme Journey To Recovery

The next day after I finished consulting with my patients, I headed to the medical library at St. Barnabas Medical Center and poured through medical journals (this was before the internet had much information available) to see what I could find about Lyme Disease.

Lyme and Pregnancy

After reading the articles, I realized that I needed more aggressive antibiotic treatment because of all of the neurological symptoms and the fact that I had Lyme for at least several months before being treated. My husband and I wanted to have another child. Through my research I learned that having Lyme during pregnancy can be detrimental to the unborn child. This was an additional reason to seek more aggressive treatment. I went to 2 infectious disease doctors. One did nothing and the other prescribed 3 more weeks of Doxycycline. I saw some improvement, but not much.

My Big Green Billboard Introduction to the “Lyme Diet”

On my way home I noticed a big green billboard that said: “Call 1-800-TICKBITE” if you have Lyme disease. I called and got the name of a physician who continued to provide the treatment that I needed. I also received a free booklet about Treatment for Lyme Disease. This was written by Dr. Joseph Burrascano. These guidelines were the initial introduction into the “Lyme Diet” and integrative approaches to treating Lyme Disease. Although they were very basic & less restrictive than the current guidelines.

I found a Lyme Literate doctor experienced with Lyme disease and I continued treatment for several months with great improvement. I had a healthy baby boy a year later!

Life Living With Lyme Disease

Since 1995, my family and I (including our Golden Retrievers) have been diagnosed and treated for Lyme and one or more of the following co-infections: Bartonella, Mycoplasma, Babesia, Anaplasma and opportunistic viruses at least once. Some of my family members have had multiple infections which have been chronic and/or relapsing. Some family members have also developed conditions such as adrenergic POTS, food sensitivities, cognitive problems, nerve damage and auto immune conditions.

As a result of Tick Borne infections I have had to totally revamp my cooking style, food choices when dining out and types of food that I eat.

Prior to contracting Bartonella 4 years ago, I ate spicy food, raw & cooked garlic, raw onions, dairy, all grains, etc. I loved experimenting with exotic ethnic cuisine. The spicier, bolder and more flavorful the dish the more I enjoyed cooking and eating it.

Since this infection my body reacts to many of the foods that I used to eat often. After aggressive treatment of the infections and time for my body to heal, I have been able to resume eating many of the foods that I initially reacted to. The pay-off is that as a result of my own food sensitivities, I became a certified food sensitivity therapist. This is another tool that I can use to help clients reduce symptoms that may be caused by food sensitivities.

Why Did We Get Lyme Disease?

When hearing my story people would often question how all of our family members could be infected and affected the way that we have been. The statement that I heard at a Lyme conference sums it up…“People with Lyme disease are never couch potatoes!”. Our family was always outdoors. We went camping, hiking, picnicking, gardening, played croquet, badminton, Bocci, etc and all 3 of our sons played outdoor sports from the time they were 5 through high school.

Other reasons why our family has been so affected by Lyme are that the county that we lived in from 1998 has had the highest rate of Lyme disease in the state of New Jersey for most of those years. Our yard was always filled with deer and other wildlife until we put up a deer fence a few years ago. We have had 2 Golden Retrievers who love being out in the yard and hiking with us. In addition we also have uncovered genetic traits that make it difficult to fight infections.

Nutrition For Lyme Disease

I started attending national Lyme/Tick Borne Disease conferences in 2008 when one of my sons was diagnosed with Lyme Disease. During these conferences doctors would frequently state that diet plays such an important role in the treatment outcome for Lyme disease and other Tick Borne diseases. This is why I have gotten involved with several Lyme Disease organizations. It is also why I began providing nutrition services for people with Lyme Disease and Co-Infections.

My family and I have gone through many of the struggles that you may be facing. You CAN be healthy and feel good again by making changes in your diet and lifestyle.