When you have chronic #lymedisease or co-infections for a long period of time, the thought of being well doesn’t often cross your mind. However, when I had my appointment with my Lyme Literate doctor (LLMD) in early July, I told her that I was feeling well, almost like “normal”, before I had #lyme and #bartonella. So, she said, “Let’s get some bloodwork and see what’s going on.”
We did just that and a month later, I appeared at her office and the bloodwork plus lack of symptoms showed that I was in remission from #lyme, #bartonella, and #mycoplasma. Staring at my doctor in unbelief, I said, “Are you sure?” And she confirmed I was. Woo! Hoo! Time for celebration!
Although I’ve battled chronic Lyme disease and co-infections off and on for 20 years, this most recent battle was primarily against Bartonella, which became active in 2018 and which is the hardest co-infection to get into remission.
During that 6-year period, I unexpectedly lost my kind, compassionate and knowledgeable doctor who had been treating me for several years. He went into the hospital with pneumonia. On the day he was going to be discharged, he developed a blood clot that went to his lung, and he died immediately. I was so shocked, as he was an active, healthy man. He had many patients, and he had no successor for his practice, so many of us were devastated and had to find a new and knowledgeable doctor. Since he was one of the few Lyme literate doctors who accepted insurance, he was hard to replace.
I am active in several Lyme support groups on Facebook, and I saw others who had lost this same doctor and were searching for a new doctor. I send many of them private messages to see who they had found or were seeing. I live in PA and, through those messages, I did find a doctor in New Jersey who took Medicare and saw her for approximately a year. However, since her office is a 2-1/2 hour drive from my house, I began to look for someone closer.
Through my contacts, I did find a doctor about an hour’s drive away who also took Medicare and began seeing her in August 2023. She has Babesia and knows what it’s like to battle Lyme and co-infections. She thought my protocol looked good, so she decided to run some tests to see if other systems in my body were functioning normally. She ordered a test that tested my neurotransmitters (using urine), an adrenal hormone report (using saliva), and a GI Effects testing (using stool). We found some abnormalities in all of these tests, and she added supplements to offset these. She also ran a test with IgeneX to see what infections were active; I was positive for Babesia microti and Bartonella quintana. These were confirmed with tests through MDL (Medical Diagnostic Labs).
In January, we did another IgeneX test and found that the Babesia was negative, Bartonella was positive, and Lyme and Mycoplasma was now positive. We changed antibiotics and some of my supplements to address the active infections. We continued treating until July when I told her I was feeling better and IgeneX blood tests revealed I was in remission from ALL infections!
I am 68 years old, teach two group fitness classes/week for seniors, am a “Nana” to 4 active grandchildren, like to garden and landscape, and like to travel. I had to curtail or put many of these activities “on the shelf” during this time because I just didn’t have the energy or strength to do them. For the first time in 6 years — 6 YEARS! — I was free of these infections. I’ve been able to be more active with my grandchildren, have more energy for the classes I teach, and take better care of my garden. I hope to do more travel in the near future. I put my antibiotics and most of my supplements on the shelf but continue to take some supplements for the systems that were deficient and to maintain my infection-free status.
There’s a lesson here. Having a Lyme Literate practitioner can make all the difference between active infection and remission. Although I know that many Lyme literate doctors do not take insurance and many Lyme patients can’t afford to see a doctor, this showed me how quickly Lyme and co-infections can come and go and how important it is to have a Lyme literate doctor who can direct you through this minefield of Lyme disease treatment.
Although I have enjoyed being symptom free, within weeks of my remission, I developed some severe GI symptoms and am working with a gastroenterologist to determine the cause. I’ve had many tests with no clear answers, which is a frustration I’m all too familiar with Lyme disease. I will update you on my next post on the process and, hopefully, some answers on that puzzle. For now, I feel blessed to be free of the burden of Lyme disease and its co-infections!
HOPE through chronic illness 