After many rounds of SIBO treatments, my naturopathic doctor pushed the pause button and suggested a possible underlying diagnosis that I did not want to hear: Lyme Disease. He said that I reminded him of other SIBO patients who ended up testing positive for Lyme Disease and/or other tick-borne infections. He recommended that I find a “Lyme-literate doctor” and get tested. After months of delays, I was finally diagnosed with Lyme Disease and a couple of co-infections.
Finding a Doctor
When it came to testing, the first challenge for me was finding another doctor. I had not stayed in one place for more than two months over the last year. My husband and I had made the decision to follow our dream of taking a traveling career break. We had wandered around the western U.S. for the last year, living off our savings while exploring our public lands. I nearly decided against it due to all my health problems. However, I ended up taking the plunge because life is short, and who knows whether I will ever be healthy again?
This odd lifestyle of moving around continuously has many challenges, which I will address in another post. One of the most difficult challenges turns out to be health care. Doctors and insurance companies expect their customers to live in one place most of the year. Even with the possibility of Skype and phone consultations, doctors need to see a patient in person at least once in a while.
To the East or West?
Since we were wrapping up our year of travels, we had to decide which “home” to choose in order for me to select a doctor. We had our official home in Riverside, California, our permanent address, the one every citizen must have for security and tax purposes. Then there was the home I grew up in back in Maryland. Perhaps I could find a doctor there and visit my dad now and then to see the doctor in person. Then there was Michael’s hometown of Red Bluff, California. It’s an inexpensive place to hang out, but not really known for Lyme-literate doctors. We were camped out on Pilot Hill, just east of Laramie, Wyoming, and we had no idea if we would be heading east or west on I-80.
In the end we chose the hectic, over-crowded, expensive southern California. I had spent 11 years in the Santa Barbara – Ventura area, and our official address was Riverside after all. More importantly I had read about a doctor in Los Angeles who was finding a connection between SIBO and Lyme Disease. His reviewers found him to be kind with a good sense of humor, on top of being a medical detective. This was exactly the type of doctor I was seeking. Unfortunately Dr. Rahbar of LA Integrative Gastroenterology was completely and totally booked for the next three months!
After chatting with a few of Dr. Rahbar’s patients on the SIBO Discussion Group on Facebook, I received a recommendation for another doctor, one who actually treats Lyme Disease. He had an opening within the next week! I took it! Michael and I headed west on I-80 and then south on I-15 and back into the chaos of southern California. We stayed in our former home county – Ventura County – and parked our home at the Mountain View RV Park in Santa Paula.
Concerns about a Lyme Diagnosis
Uncertainty about the possible Lyme diagnosis plagued me. I did not want to spend years going down the Lyme Disease rabbit hole after already spending years down the SIBO rabbit hole. I knew that there was a strong possibility I could test positive for Lyme Disease. I grew up in a rural part of Maryland, where I spent lots of time outdoors, and I recall several tick bites in my lifetime. However, I wanted to take a step back and consider ALL of the possible factors in my chronic illness with no bias for one particular diagnosis. I did not want to jump to the conclusion that Lyme caused all of my symptoms, as I had previously done with SIBO. As I recently told my SIBO buddy (a fellow SIBO sufferer and now good friend), “I want to do ALL THE TESTS and figure it ALL out NOW!” (That is, if money were no object!)
I was desperate for progress. When I am at least trying to make progress on my health, whether that involves experimenting with a new treatment or testing for possible causes, I find that I have hope. When progress grinds to a halt, I become negative and irritable. I cling on to any bit of progress with all my might for my own sanity and survival. Feeling hesitant about the possible diagnosis of Lyme Disease, I headed to my appointment with this Lyme-literate doctor for the sake of progress!
My Visit with a Lyme-Literate Doctor
My visit with this doctor was brief. Based on my symptoms and experience treating SIBO and hitting a wall, he was convinced that I had Lyme Disease and likely some co-infections. When I told him that I was a biologist and spent a lot of time outdoors, he seemed even more certain. I tried to explain that I wanted to consider ALL of the possible factors that may have contributed to my current health condition. However, he did not see the point in spending time or money on any other testing until I was tested for the Lyme bacteria.
His attitude only encouraged my suspicion. As they say, when “all you have is a hammer, everything looks like a nail.” I got the impression that since his specialty was Lyme Disease, everything looked like Lyme to him. Given all the bizarre symptoms that can be caused by Lyme, it’s easy to match this diagnosis to many patients’ symptoms.
The doctor recommended the DNA Connexions test that would identify the DNA of tick-borne bacteria in my urine if it were present. My first reaction to this test was more skepticism, especially since the test was not CDC-approved nor covered by any insurance companies. Was this a true test for Lyme?
If you’ve read anything about the diagnosis of chronic Lyme Disease, you know that controversy remains. This controversy causes many patients with real and debilitating symptoms to remain sick while being told that “it’s all in their heads.” I was one of these patients for many years. Doctors ran the routine blood work, and when they found nothing wrong, they began to view me as a mental case instead. Although I fully embrace the fact that the mind and body are connected, I knew that my illness did not begin in my head. I was happy and thriving in both my professional and personal lives before all my symptoms hit me. There are thousands more just like me.
The controversy over Lyme Disease caused me to approach the testing and diagnosis with some healthy skepticism and caution. However, I am not a member of the “head-in-the-sand” camp. I am not convinced by those who are in complete denial of the existence of chronic Lyme Disease. There are all kinds of chronic infections. Why not Lyme?!
Logic thought should lead us to believe that a chronic infection from ticks could be just as possible as a chronic infection from, let’s say, chicken pox. Let’s take a look at chicken pox. In this case, even the CDC explains that the chicken pox virus can remain in our bodies after initial infection. In some people, their immune systems keep it in check for a lifetime, while in others, the virus causes what we call “shingles” later in life.
My logical and science-trained mind convinced me to move forward with the test. If the DNA of tick-borne bacteria were in my urine, then they could certainly be at least partially responsible for my never-ending sickness.
On top of my logic, I had past experience to bolster my decision. I had broken down the barriers of the skeptical conventional medical community before and made progress. My gut problems were caused by fermenting bacteria creating methane, not for lack of fiber in my diet! The pain in my feet were improved when I finally busted out of the mainstream and put spacers between my toes and began wearing minimalist shoes!
Before taking a urine sample for the DNA Connexions test, my doctor recommended either vigorous exercise or a massage. These actions were supposed to loosen at least some of the potential bacteria lodged in my tissues. This way they would be out floating around in my bloodstream and consequently come out in my urine.
I eliminated all of the urine in my bladder and then took a hike at Arroyo Verde Park in Ventura, where I used to hike regularly after workdays. In my current condition, I am not all that energetic, but I dragged myself up and down the hills and worked up a sweat. About 30 minutes later, I took a urine sample, placed it in the Fed-Ex package, and shipped it to the lab.
Diagnosis and Treatment
One month later in a brief phone consultation with the Lyme-literate doctor, I learned that I am carrying the DNA of Borrelia burgdorferi Osp C (Lyme), Babesia duncani, and Bartonella henselae-NPS. The doctor explained that he preferred to treat with herbs initially, and then if I did not improve adequately, he would consider treating me with antibiotics (the pharmaceutical kind).
My herbal cocktail would consist of Samento, Banderol, and Stevia by Nutramedix for Lyme, A-Bab for Babesia, and A-Bart for Bartonella, both produced by Byron White Formulas. I was told to work my way up to a full dose slowly, increasing by one drop of the herbs each day. My full dose consists of 30 drops of each of the Lyme herbs twice per day, and 10 drops each of the herbs for the co-infections, also twice per day. The total monthly cost of this protocol: approximately $300. That brings my monthly herb and supplement bill to $600!
The doctor said that I should experience about a ten percent improvement each month. I spent one month working my way up to the full dose, and I have been taking the full dose for several months now. So far, I have not experienced any improvement. I know that herbs take a lot longer than pharmaceuticals, especially for chronic infections. I’ve been patient. However, at this point, I am starting to wonder how long I am willing to wait and hope for progress given the cost. At what point do I put this money towards further testing or a different treatment option instead?
I have a follow-up appointment with the doctor to ask this very question. In the meantime, I have read a book that every patient with chronic illness of unknown origin should read: Dr. Horowitz’s Why Can’t I Get Better? The moral of this story is that most chronic illness is caused by multiple factors. Until a patient identifies and pulls each of those nails out of her foot, she will not get better. The book describes many factors that this doctor has repeatedly found affecting his patients as well as the tests required to diagnose these factors.
I am fully convinced once again that I NEED ALL THE TESTS NOW! Well, at least all the tests for factors that are likely for me. Why should I waste money on treatments, like I already have for two years with the SIBO diagnosis, until I know everything I need to be treating?
To be continued…