After three long years of not feeling well, I was finally diagnosed with Lyme disease in November 2014. My laundry list of symptoms were wide-ranging and included severe fatigue, stiffness in my neck, difficulty thinking and concentrating, poor short-term memory, disturbed sleep, irritability, depression, ringing in my ears, unexplained weight gain, and unexplained sweats and chills. I was in my late 40s, so I couldn’t tell if my symptoms were due to a hormonal imbalance or perimenopause – or something else.
At every doctor’s appointment from 2011 through 2014, my Lyme-literate primary care physician would wonder aloud if I had Lyme disease even though prior testing came back negative. Except in June 2013, a LabCorp test showed the presence of one of the three antibody bands (IgM P41 Ab.). The CDC considers that 2 of the 3 bands must be present to diagnose Lyme disease. However, the presence of this one band was enough to make me wonder. I never saw the bulls eye rash and didn’t suffer from joint pain like many with Lyme disease. At the time, the doctor told me that I was exposed to Lyme, but that some people can be exposed to it and never contract the disease, due to a strong immune system. So I began to wonder how strong my immune system was.
Getting diagnosed was a long, meandering road
Getting diagnosed with Lyme disease can be tricky, because the tests are imperfect. Current blood tests search for antibodies that your immune system makes to fight the bacteria, but some people’s immune systems simply don’t make the antibodies. Additionally, a recent study of 3,000 people with Lyme disease found that only about 40% of patients get the bulls eye rash.
I underwent four tests for Lyme disease between August 2012 and November 2014; three different tests were used as my doctors tried to find evidence of Lyme. I started with a Western Blot test (LabCorp). The first test came back negative. A new doctor recommended another Western Blot test. The second LabCorp Western Blot test showed a possible Lyme infection (presence of one band)- but it was not definitive. Next, I did the Advanced Laboratory Services Poly Borrelia Culture test; it came back negative.
It was actually the IGenex test that proved to be the definitive one. I found out about it from another patient who had Lyme disease who was sitting next to me in my doctor’s waiting area. IGenex is a lab that specializes in testing for tick born disease. Finally, I had my diagnosis. It was November 2014, more than three years after I had started showing symptoms.
First, I was relieved to know what I was dealing with and that it wasn’t all in my head. My second reaction was fear about what the future would hold for me with this disease. To learn more, I bought a few books that my doctor told me about and joined Lyme groups on Facebook (be forewarned that many of the stories you read on these Facebook groups are devastating and heartbreaking). I also talked to everyone I knew who had Lyme disease to see what worked for them. It was surprising to me how many people I knew had experience with Lyme disease! And, of course, I consulted with my Lyme literate doctor along the way.
My alternative treatment
I spent a few years prior to this diagnosis trying to heal a leaky gut, so I was looking for another option besides antibiotics for treatment. My symptoms weren’t severe when I started treatment, however, I wanted to do something so things didn’t get worse. My doctor told me about two other options, the Cowden Protocol and Byron White Formulas––both of these were developed by alternative healthcare practitioners. I researched them online and decided to go with the Cowden Protocol herbal tinctures, which I read were more multi-spectrum than antibiotics. (Note: You can buy the Cowden protocol herbal tinctures online from Nutramedix without a prescription.)
I followed the Cowden Protocol treatment for four and a half months (my doctor recommended longer). During this treatment, I took a variety of herbal drops in water four times a day: 30 minutes before breakfast, lunch, dinner, and bedtime. The protocol is kind of a pain to follow -preparing and taking the various tincture mixtures 30 minutes prior to meals, especially when you are away from home at meal times. Even so, this protocol worked for me.
In addition to following the Cowden Protocol, my doctor also recommended that I stick to a paleo diet, which involved avoiding grains, dairy, soy, processed food and sugar. I also underwent acupuncture treatments, which I found really helpful for my healing – it dramatically improved my energy level and emotional well-being. I spent time in saunas and did lymphatic massages to help with detoxification.
Several times I have considered taking another test to see if my alternative treatment worked and to determine if I am really done with treatment.
There is a new Nanotrap test available now that analyzes urine samples, which is reported to be to be 90% accurate for acute cases. However, there isn’t enough data available yet to support its accuracy in chronic cases. I have not taken this test. I have heard some people have tested positive with IGenex and negative on the Nanotrap test. I have decided not to spend money on additional testing, and instead spend my money on acupuncture, chiropractic, yin/restorative yoga, high quality supplements, and lymphatic massages to support my body in healing.
My recommendations if you suspect you have Lyme disease
Seek out a Lyme-literate doctor -you will find many of the consumer- recommended physicians in our Wellness Directory.
In my experience, many conventional physicians tend to discount the likelihood that you have Lyme disease. And if you test positive, they will only prescribe antibiotics. I suggest working with a holistic Lyme-literate doctor to evaluate all the available treatment options. Ask for the IGenex or Nanotrap test, while keeping in mind that Lyme disease is a clinical diagnosis and testing is imperfect.
Talk to others who have successfully treated themselves for chronic Lyme disease.
If you want to learn more about Lyme disease and treatment, I highly recommend the book “Why Can’t I Get Better: Solving the Mystery of Lyme & Chronic Disease” by Richard Horowitz, MD and the ebook, “The Treat Lyme Book Guidelines” by Marty Ross, MD. Dr. Ross updates the ebook periodically, and he also provides online consults and webinars.
My Lyme disease took years to diagnose, and healing has been a journey too. There is always the risk of re-exposure to Lyme as well. As a matter of fact, I am taking antibiotics right now (along with VSL #3 probiotics) because of a recent tick bite. (Again no bull’s eye rash.) During the process, I have had to be gentle with myself. I found it to be more helpful to focus on ways to heal my body, mind, and spirit; rather than following a really aggressive treatment effort to “kill” the Lyme disease.
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