Lyme disease: My Journey to a Treatment
I was diagnosed with Lyme disease early in 2017. I covered my Journey to a Diagnosis of Lyme disease in a previous blog post and in an interview video blog with Dr. Goodyear on our youtube channel. This blog post highlights My Journey to a Treatment with chronic, persistent Lyme disease. In this post I will focus on the history of Lyme disease and the evidence-based, customized treatment strategy we use at Forum Health Knoxville to treat and heal those with Lyme disease.
Lyme disease was first recognized in the early 1970s in the community of Lyme, Connecticut when the causative bacteria, Borrelia burgdorferi, was identified by the Burgdorfer’s research group. The existence of acute Lyme has never been questioned. In contrast, the existence of Persistent Lyme disease, Chronic Lyme, Post Lyme Chronic Immune dysfunction, or Post-Treatment Lyme disease Syndrome, whatever it is called, has been intensely debated. Currently, approximately 300,000 physician-reported cases of Lyme disease are reported annually in the United States. However, the Center for Disease Control (CDC) estimates that the actual incidence is 10 fold higher. It may be even higher than the 10 fold estimates from the CDC due to the lack of physician reporting and the lack of physician testing
If you check the medical manuals for disease treatment, many illnesses have very specific standards of care. Penicillin is recommended for strep throat, Insulin is recommended for Type 1 diabetes, and thyroid replacement improves hypothyroid (low thyroid) symptoms. Standard medical care has many algorithms which can be easily researched through google and other medical and non-medical search engines. Who is an algorithm though? Whose genetics/epigenetics, physiologic function, and lifestyle patterns can be explained by algorithms? Diseases such as Lyme, which fall under chronic immune dysfunction (CID) or multi-systemic infectious disease syndrome (MSIDS) are much more difficult to treat. Why? The main reason is that the intensity of the debate around Persistent Lyme disease has intimidated many physicians to not even test for Lyme and influenced many physicians to believe that Persistent Lyme does not even exist. This leads to a delay or a complete lack of testing in those with symptoms suggestive of Lyme that leads to a delay in diagnosis and delay in treatment.
Every year the International Lyme and Associated Diseases Society (ILADS) updates their guidelines on Lyme. At their annual conference in Boston that I attended this past fall, some of the new evidence-based treatment considerations for Lyme included:
- Oral antibiotic options
- Intravenous antibiotic options
- Intramuscular antibiotic options
- Combination antibiotic options
- Duration of antibiotic therapy
- Steroid usage
- Treatment for co-infections
- Symptomatic treatment
- Fibromyalgia therapies
- Alternative treatments such as hyperbaric oxygen therapy/anti-viral medications/herbal therapies/Vitamin C intravenous therapies/diet
Perhaps this is one of the reasons why Lyme patients have historically felt so overwhelmed and even defeated. There is no algorithm that can define the diagnosis and the treatment of Lyme disease. Medical providers can feel just as frustrated when they research treatment options. Without an algorithm, multiple choices for a debilitating disease can be seen as a confusion or a roadblock all together, rather than as realistic flexible solutions for a complex immune dysfunction that can result from Lyme
A new study proposed 4 possible explanations for the decrease in standard antibiotic treatment success:
- The persistent presence of B. burgdorferi in various tissues that are either not accessible or are impervious to antibiotics
- Chronic inflammation due to dead B. burgdorferi
- Chronic inflammation due to residual tissue damage
- Autoimmune inflammation
This new study also highlights the complexity of Lyme disease and how algorithms are essentially useless in the face of this complexity.
The Treatment plan
What has my Journey to a Treatment for Lyme looked like?
Just like many other patients, I tried the traditional medical approaches. You may know them well. The first step was an oral antibiotic. However, my diagnosis of Lyme was delayed, and due to this time delay from the initial infection to my diagnosis, the antibiotic therapy did not provide any relief from my symptoms. Next, steroid therapy was added to reduce inflammation and joint pain (my primary symptom). Any of this sound familiar? Steroids worked for a little while but I soon realized I couldn’t tolerate the side effects. Perhaps it was the weariness and the toll this disease was taking on me, but the steroid therapy definitely exacerbated my sense of depression. Therapy is not beneficial if the side effects are worse then the benefit. I don’t buy into the 2 steps back for 1 step forward philosophy.
I decided to take my treatment into my own hands. As I studied, read, and researched Lyme, I began to understand that the contributing factors to my misery included infection, inflammation, and a compromised immune system. I needed to tackle all three simultaneously in an on-going strategy. Simple elimination of the infection would not be enough. A reduction in the systemic inflammation and support to a damaged immune system would be required. Recent research points to the challenges associated with the treatment of delayed Lyme diagnosis. Through my research, I developed a multi-system approach to treat the infection, reduce the inflammation, and to support my compromised immune system.
For the past 5 months, the cornerstone of my personal treatment plan has been the utilization of specific herbs to attack the Lyme, to reduce the systemic inflammation, and to support my compromised immune system. I recently attended a conference in Arizona by the Association for the Advancement of Restorative Medicine (AARM). The first day was completely devoted to the medicinal use of herbal therapies for a wide variety of diseases, including Lyme. I was amazed at the science behind such versatile plants! My specific combination of herbal therapies helps to eradicate the Borrelia burgdorferi bacteria while breaking open cysts and removing biofilm that can contribute to treatment resistance. These herbal therapies also decrease inflammation, build up my immune system, and improve my overall mental and physical well-being.
A complete wellness restoration plan does not simply include a diagnosis and treatment plan for Lyme disease alone. In addition to my positive Lyme test, my previous testing also was positive for significant gut inflammation, my Cortisol levels were surging dangerously high, my immune system was depleted, and my Arsenic load was at toxic levels. Some of these results were because of the Lyme and maybe even increased my susceptibility to Lyme, and others were just coexisting health problems. As is my case and as is the case for others with Lyme, the journey to a treatment and a cure is not going to be a sprint but rather a marathon. Likewise, it is not a simple narrow focus of Borrelia infection, but a wider focus cast to eliminate infection, reduce inflammation, support the immune system all to restore optimal health and wellness potential.
I have many other tools that are critical to my treatment strategy. First and foremost are the weekly Vitamin C IV therapies. The medical research on this vital therapy is astounding. The high dose Vitamin C addresses all three areas of concern: inflammation, infection, and my compromised immune system. In addition, at night, I use low-dose hemp oil to sleep and to boost my immune system. I’m using several techniques for the chelation of Arsenic while trying to determine the source. Tap water, rice, and chicken are three of the more common sources which I have always avoided (unless the rice is certified organic). All of us are exposed continuously to metals and toxins in our environment – the key to prevention is the ability to detox efficiently when exposed!
A new wellness tool at Forum Health Knoxville is the use of Epigenetics and Genetics to customize therapy for each individual. What makes us unique is our unique genetic code. Epigenetics is the study of an individual’s personal DNA and how the environment affects the DNA expression as a result of diet, exercise, stress, nutrients, etc. I have completed this test and am anxious to see the results. This will enhance my treatment plan significantly because it customizes therapy to match my genetic expression.
From this unexpected journey, I have also learned about the effects of electromagnetic fields (EMF) and the risks they pose to my immune system. Power lines, wifi, and cell phones are common sources of EMF exposure. I now place my cell phone far away from my bedside table at night to limit EMF exposure. I use energy dots on the back of my phone to help defer EMF exposure. In addition, my microwave oven (another common source of EMF) use is becoming a thing of the past.
My focus is to continue to improve upon my diet adding lots of color on my plate for the needed anti-inflammatory support. I literally run from processed sugar (most of the time), and I drink alkaline water all during the day. I get plenty of sleep, exercise as tolerated, and manage my stress.
A very important additional step in my journey to healing is my faith. Healing the body is the goal but healing the spirit and the soul is just as important and I believe is required to heal the body. A disease as devastating as Lyme can wear you and your family down. For me, one of the most effective treatments was time alone with God. I had favorite verses that I would remember and play over in my mind continuously. Those promises became as important to me as the herbs and the IV Vitamin C therapies. In fact, they are the foundation of my daily well-being.
I have come so far and I have improved so much over the last 6 months from the effects of Lyme, however, I still have relapses. I can usually determine my triggers easily and I am able to get back on track with my wellness journey quickly. The symptoms are not as intense or unbearable, nor is the duration as long. In fact, I haven’t missed any days of work in months. The Borrelia bacteria may always be present in my body to some extent, but it no longer rules my life. Many of my treatment options will be incorporated into my daily routine for the rest of my life. The key to my personal long-term wellness will be the management of inflammation, the elimination of the Lyme infection, and the continued support of my immune system.
The advantage of a personalized wellness plan, like my plan, developed at Forum Health Knoxville is that we can pinpoint the root causes of dysfunction in my body and yours and then begin to heal and restore optimal wellness potential. It has worked for me and many others and it will work for you. Call our office at 865.675.9355 to learn more today.
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