I had my first appointment with the Lyme-literate medical doctor (LLMD) yesterday. As you know, he came highly recommended to me by my acupuncturist/naturopath here in Reno as well as ILADS.org, the website for the International Lyme and Associated Diseases Society. He’s a board-certified family practitioner. He also has certifications in the treatment of Lyme disease and Oriental and naturopathic medicines, among others.
Hubby and I arrived with my notebook of medical records in tow, and we were ushered into an exam room. The walls of this room were filled with seminar flyers and framed clippings of articles about Lyme disease from newspapers and magazines. Many of these featured him as the keynote speaker or subject of the articles. The bookcase was filled with stacks of Lyme disease textbooks, too.
Once the LLMD entered the room, we had a long discussion about my health history, and he looked through each and every page of my medical records notebook. He seemed to link other abnormal blood tests to the Lyme disease. These were things that I thought were just coincidental. I was so thrilled by how very thorough he was during our time together, which amounted to just over one hour.
And that hour was extremely overwhelming for me. He explained what Lyme disease is and how it was most likely to be the cause of my Lupus because the results of my Lyme blood test showed a particular marker that indicates an overactive immune system. In other words, autoimmune disease. He said that he’s personally seen Lyme disease cause other autoimmune diseases, such as multiple sclerosis and rheumatoid arthritis. He knows of other physicians who have treated Lyme-induced Lupus, but I am his first personal case of Lupus caused by Lyme.
He also gave me the history and controversy of Lyme disease treatment protocols and how there’s a divide between doctors, labs, the CDC, the insurance companies, and the drug companies, especially when it comes to long-undiagnosed Lyme disease.
As he concluded our session, he explained that before he could recommend treatment with long-term antibiotics or other drugs, he would be ordering more extensive blood tests and cultures to determine if there are any “co-infections” along with the Lyme bacteria. Co-infections are other bacteria and/or parasites that accompany the Borellia Burgdorferi bacteria that causes Lyme disease.
So, now I have to start the process of getting those labs done here in Reno as soon as I can before my next appointment with him on March 16th. In the meantime, before I see him again, he recommended that I read the book called “The Beginner’s Guide to Lyme Disease” by Nicola McFadzean.
I feel like I’m in good hands so far, but the uneasiness with it all remains. I liked his disposition. He was caring, thorough, and honest. But his assertion that my Lupus and other issues may have been caused by the Lyme disease is very hard to swallow. I mean, how can he say that with certainty? There’s no way to prove it, really.
I can’t forget that he calls himself an LLMD.
All I know is that my strange symptoms began just after I gave birth to my son (who will be 24 years old next month). Since then, my life has continued to be riddled with intermittent bouts of illness, ranging from the nuisance of hair loss to more life-threatening conditions, like the bilateral pulmonary embolism (multiple blood clots in both lungs) I suffered in 2008.
I’m approaching this with an analytical mind, weighing the facts against hearsay and seeking out alternative opinions along the way.
I have too much to lose to go off will-nilly on the results of lab tests that may or may not be accurate.
Even with the uncertainty of this latest news, I’m optimistic. I have to be. I don’t have a choice.