Dear Diary,
After spending a quiet, restful weekend with my Hubby, I spent this glorious Monday morning feeling a sense of acceptance and a clear perspective about my situation. It felt good to be planning my nutritional strategy for getting better and helping the medicines along. More juicing, fewer carbs, no added salt, and no sugar. I also spent time meditating on the healing of my body.
Unfortunately, my calm morning let to an afternoon of more unexpected uncertainty, just as I was beginning to feel that I understood and had the correct perspective on what to do about the Lupus and Lyme disease with its co-infections.
Let me first say that the two doctors I saw this afternoon are among my favorites—my pulmonologist and my hematologist. My first appointment was with Dr. S my pulmonologist, a very caring doctor, and I don’t ever doubt that she wants what is best for me. I arrived at her office expecting a breathing test and a discussion about why I chose to stop taking Singulair. Things went as expected, I received good news about my breathing test, and she agreed that I didn’t have to go back on the Singular.
The unexpected part was when I brought up the positive tests for Lyme disease and its co-infections. I asked her if she thought any of my pulmonary issues could be attributed to that, in addition to the Lupus. Also, I wanted to know if she’d had any experience with the Lyme disease issue.
Well, like a light switch going from on to off, her demeanor changed drastically. She said the whole Lyme disease debate was so controversial and that I had to be very careful in deciding what to do next. She emphasized that it was important to consider ALL my options to gain the correct perspective, weighing the risks versus the benefits of taking strong drugs for several months, given my delicate situation. She never did address whether she’d had experience with Lyme disease or not. I left there feeling a bit empty and confused; but thankful that she was so honest with me.
After meeting with Dr. S, I took the elevator to the fourth floor to meet with Dr. V, my hematologist. A little bit younger than Dr. S, she reminds me of a caring, nerdy whiz kid with glasses and all, sharp as a tack and feisty like me. She’s also an oncologist (as are most hematologists), so she always shows concern about the cancer that runs in my family. My father died of colon cancer, and my sister survived breast cancer. This visit was no different when she asked about my most recent mammogram. Thankfully, I remembered to bring a copy of the results letter with me. Benign.
I was also prepared to discuss the results of the comparison of my at-home INR test results with the results from the lab. I test my INR weekly to make sure I stay within the therapeutic range. This is necessary because I have been taking Coumadin since having a pulmonary embolism seven years ago.
Anyway, the makers of my INR testing machine sent a scary letter saying that the machine might not be calibrated properly, and that if you suffer from an autoimmune illness (or various other vascular conditions) you should get a comparative reading from a lab to be sure that your machine was okay. So I went to the lab for the INR test on my normal testing day, and the minute I got home, I tested myself with the machine.
As it turns out, the reading from the lab was 2.1 and my reading was 2.3. No big deal, Dr. V said. For further reassurance, she said that the machine’s readings would always be verified should we have to make any major decisions about my health.
Okay, that was good news. Mammogram; check. INR test validation; check. Next up, the Lyme disease and co-infection discussion item. So many questions I had for her. Did she get the fax from Dr. M? How would the Coumadin interact with the Mepron and Zithromax? What were her thoughts on Lyme disease?
She paused and pondered for a minute, then looked at me and asked what kind of doctor was Dr. M. I told her that he was a board-certified family practitioner, who was also certified by the ILADS to treat Lyme disease. She asked if he was an infectious disease doctor. I said no. She immediately said that I should get a second opinion about the diagnostic tests and Dr. M’s treatment plan.
The concern on her face was scary as she said that she didn’t want me to lose any of the progress I’ve made since she started treating me. The fact that I’m stable and able to do more (even though it doesn’t feel like it to me) shouldn’t be overlooked or taken for granted. The Zithromax and Mepron, which she referred to by its generic name, are VERY strong drugs, and who knows what kind of affect they would have on me or what kind of interactions there would be with the Plaquenil and the Coumadin.
As she reminded me about my sensitivity to all changes in medications (and foods for that matter), I couldn’t help but think of what a catch-22 it was to know that the drugs that could potentially help me might cause permanent damage to major organs. Risk versus benefits again.
She even speculated that the doctor was probably operating on a cash basis and didn’t take health insurance. She was right about that. Dr. M opted out of Medicare about a year ago. She said she wasn’t trying to knock him, but that’s just one of many red flags of doctors who operate outside of the established norms and acceptable parameters.
Sigh.
At the end of our discussion, Dr. V took the action of officially referring me to an infectious disease specialist—someone she personally knows and trusts. She wants his opinion before answering any of my questions about Lyme disease, its co-infections, or the possible problematic interactions of Coumadin with planned treatment drugs for Lyme-related infections.
Well, I certainly didn’t expect such intense responses from my trusted doctors. But, because I trust them, I have to consider their thoughts and opinions. Boy, how my perspective changed from this morning until now.
Deep breaths. That’s all I can do after the two doctor appointments I had this afternoon.
Love,
Olivia
