So many people in our area are suffering from chronic lyme disease and so many more have it, but don’t know it or haven’t been diagnosed yet. This is the first of many posts we plan to run about Lyme disease. We hope to explain how it has affected people who suffer from it, and share insight about the testing and treatment options that our community members have found most helpful for recovery. -Sandra
Lyme Disease Q & A with Suzanne Nixon
Q. When and how were you diagnosed with Lyme disease?
A. I was diagnosed with Lyme disease in March 2013. I made an appointment with a Loudoun County Integrative Medicine Physician, who spent 90 uninterrupted minutes with me reviewing my health history, symptoms and labs over the course of a year. This was the first time ever a primary care physician spent this amount of focused time with me. He did a blood test and sent the sample to the IGenex Lab in Palo Alto, CA. This lab does a more comprehensive evaluation, looking at more of the “bands” associated with Lyme disease, where the standard CDC test evaluates only a limited number of bands. Another physician had tested me for Lyme disease a year prior, and the results on the CDC test were negative.
Q. What were my symptoms leading up to the Lyme diagnosis?
A. I had a year of “unexplainable” symptoms, meaning I did not have an illness or accident that could explain my symptoms. This included: vertigo, hearing loss, extreme tension in my lower calf muscles, nerve pain down my right side, joint achiness and pain in my right thumb and right toes. I had many visits to my primary care, one visit to the ER, saw 3 different ENT’s, an orthopedic physician, a physical therapist, an endocrinologist, a neurologist; had an MRI of my brain, one of my right knee, a nerve conduction test; received regular massage therapy and acupuncture, took mineral baths, was on a vitamin & supplement regime, took anti-inflammatory pills and changed my diet.
Q. What types of treatment helped you to “recover” from Lyme disease?
A. Once diagnosed treatment included a series of antibiotics: 4 different kinds taken on a rotating basis 5 days a week for 3 weeks, one week off; and then repeated again for 3 weeks. I was on many supplements and vitamins; on a nutritional plan that excluded gluten, sugar and alcohol, walked and stretched nearly every day, and rested often. I cut back on my social activities and professional speaking. I continued seeing my acupuncturist twice a month, and received massage monthly. Symptoms began subsiding 3 months after treatment began and significant reduction in symptoms cleared within 6 months. The muscular, joint and nerve pain were the first symptoms to clear up and have not returned. I was not so fortunate with my symptoms of vertigo and imbalance. These symptoms would come and go.
I had another MRI of my left knee and it showed a slight tear to the meniscus. I decided to have surgery. My surgeon, a well-known and very experienced man said: “I never saw a meniscus like this (and he was a surgeon for professional football players) …it wasn’t torn, it looked like something was eating at it.” I asked him if he thought it could be the spirochetes and he said he doesn’t know much about Lyme but it sure looked like something was eating away at it.
My alternative practitioners were very helpful. Complementary therapies were effective in temporarily relieving my symptoms.
Q. Have you experienced any relapses? If so, what were the symptoms you experienced?
A. I relapsed about a year later, in December 2014, with severe vertigo, balance issues and an increase muffling in my left ear accompanied by severe hearing loss. I went back on antibiotics for 2 more rounds. However treatment was not effective. My condition worsened and I was not able to work full time. It was a very challenging time health wise and financially, for I am self-employed.
My doctors suggested I have more testing. I was “dizzy” most days of the weeks and the spontaneous attacks of vertigo left me incapacitated for hours. I had another brain MRI, an extensive one in which I was “in the closed machine” for one hour. Results: normal brain. A CT scan of my head/ears showed a moderate, superior semi canal dissonance, a condition in which the superior bone in the inner ear thinned. I asked my ENT what could cause it. He said there was no definite answer, sometimes congenital, sometimes not. I wondered if it could be due to Lyme disease. My doctor said he didn’t know, yet it was possible. Surgery for this condition is not recommended until the bone is severely disintegrated and symptoms are debilitating.
Q. What helped you the most to recover from the relapse?
A. I decided, along with my Integrative Medicine Physician, to take a food sensitivity test and a candida test. Results showed there were very few foods I was allergic to (including gluten), yet I tested very high for candida. We believe this was a result of the continuous use of antibiotic treatment. The candida diet is a strict one, no grains, no sugar, however I must say, when I follow my plan, I feel great, like my old self. If I have a cookie, a piece of chocolate or a glass of wine, within 1-2 hours, I will have a negative physical reaction: a moderate attack of vertigo and “a constant muffling” in my left ear. We know the condition of candida is triggered by food: sugar, yeast and grains. My head and inner ear are the places in my body where the infestation of yeast/fungus is the highest, thus where my symptoms manifest.
Meditation played a significant role in my coping and healing from Lyme disease. I learned how to meditate early in life, and had a relatively consistent practice for decades. I meditated to reduce stress, increase calm, connect to my center, release toxins, clear negative energy and restore inner balance. When my Lyme symptoms were moderate to severe (pain, dizziness, vertigo, and feelings of hopelessness), the only thing I could do was meditate. It was the only resource I could depend on toget me through the difficult times.
Q. Where are you now with Lyme disease?
A. Today I am 85% better. My high energy levels have returned. I am able to work full time again. I am slowly returning back to my exercise/fitness routine. I was an avid runner, cyclist and gym rat for decades. When I am able to exercise regularly, I will feel more fully healed.
Q. What are your lessons learned?
A. Lessons learned:
1. Importance of an Integrative Medicine Physician.
For decades I always integrated complementary and alternative therapies into my healthcare regiment. I learned the necessity and value of having both an Integrative Physician and a Primary Care Physician. My lyme diagnosis drove this point home. I sincerely believe if I didn’t consult an Integrative Medicine Physician when I did, my Lyme disease would have gone undiagnosed for a longer period of time, and I sincerely believe, I would have been gravely ill. Lyme research shows accurate and timely diagnosis along with a comprehensive treatment plan are significant factors in healing swiftly and fully.
- The Value of Healthcare Providers that Listen Deeply and are Knowledgeable.
I am an Integrated Psychotherapist, blending traditional and complementary approaches, in helping individuals and couples restore well-being in mind, emotions, body and soul. I also specialize in working with people with chronic illnesses and integrate psychotherapy and energy medicine in their journey towards healing and wellness. I share this with you for in the past 3 years, I have referred 12 clients to Integrative Physicians to get the “best test” for diagnosing Lyme. These clients presented with physical and psychological (thinking and emotional) issues. When I deeply listened to their stories and history of symptoms, I did not believe their symptoms and complaints were just psychologically based (for example: anxiety, phobia, panic attacks, deep depression, heart palpations, joint pain, fatigue, etc.). Even though some of them had the standard Lyme CDC test and Lyme was ruled out, I felt suspicious. These clients followed my recommendation and the outcome: 10 OUT OF 12 PEOPLE I REFERRED TO INTEGRATIVE PHYSICIANS, WERE DIAGNOSED POSITIVE FOR LYME DISEASE. All of these 10 people received treatment and their condition, health and life improved.
- Trust your Body.
You have been living with yourself your whole life. You have an “inner physician inside of you”, a wise voice who knows when something is wrong. I knew I was very ill enough though my primary care doctors and specialists said I had great labs. In particular the endocrinologist said, “You have the best labs I have seen all year!” Why then did I feel so bad?
- Don’t Give Up.
Trust that there is a healthcare practitioner, therapist or physician that will help you figure out what your diagnosis is and deliver healing treatment. Ask others for support and help.
- Get Educated.
There is so much to know about Lyme disease. Attend lectures, seminars, read books, join a support group or ask other individuals infected to share their stories and helpful information. You must be responsible in educating yourself. Ask for support from the people that love you to join in and learn with you.
- Comply with the Treatment Protocol.
When you receive a medical treatment protocol by the doctor you trust, Comply! In consult with your physician, find experienced and talented holistic health and therapy practitioners, for treatments and remedies that aid and support your healing.
- Ask Up Front About Costs.
Integrative Medical Physicians, Complementary & Alternative Practitioners and advanced laboratory testing is costly. Most of these experts do not participate with insurance companies. Find out ahead of time what the costs are.
Suzanne Nixon is a recovered Lyme patient and tells her story to offer support and hope to those infected. She has been in the field of holistic health, wellness, psychology, energy medicine and education for a combined 35 years. Dr. Nixon has been in private practice for nearly 30 years. She is a licensed professional counselor, licensed marriage and family therapy, certified energy medicine practitioner, educator and public speaker, and specializes in an integrative approach to health and well-being.
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