For several months I've been debating about whether to keep my GP (Dr. L), or try to find a doctor who is more familiar with ME/CFS. While I'm already the patient of an ME/CFS specialist, it would be nice to also have a GP who is at least somewhat familiar with ME/CFS and its treatments. For one reason, my specialist is an hour's drive away, and not all of my ME-related problems are worth the hour's drive. Another reason is that I would like my GP to be able to coordinate my overall health care plan with my ME/CFS specialist -- and it is difficult to do that when the GP doesn't have a clue about ME/CFS. But maybe the most important reason is that I wasn't even sure that my GP even believes in ME/CFS. While I can certainly work with a doctor who doesn't understand ME (who does?), I can't work with a doctor who doesn't believe in it.
But on the other hand, I'm very reluctant to fire my family doctor after so many years. She was my doctor well before I got ME/CFS, and she knows my medical history well. She is also my my wife's GP. But maybe most importantly, she is a good doctor and a good person. So it would be a difficult decision if I decided to leave.
I came to the conclusion that I needed to have a frank and honest discussion with Dr. L to learn exactly where she stands with regard to ME/CFS. Our conversations about CFS in the past have been vague and fleeting. While she could clearly see that I was struggling with a number of difficult health issues, she simply and honestly admitted that she did not know how to explain them. When I finally obtained a diagnosis of ME/CFS from another doctor and told Dr. L about it, she maintained a poker face. I wasn't sure what to make of her reaction...or non-reaction. Ever since then, we've simply treated my symptoms as stand-alone symptoms -- outside of the context of ME/CFS.
For the past two weeks, I've been battling a cold/flu and one of the worst sore throats I have ever experienced. I hoped the sore throat would pass on its own, and for a while it improved. Until suddenly it got much worse. I was once again forced to cry uncle and seek help from my GP (which I knew might mean anti-biotics -- something I've been trying to avoid because of my candida). This would be the perfect opportunity to have a frank discussion with Dr. L.
First, I let Dr. L examine my throat. She was, not surprisingly, horrified by what she saw. Although the results of the lab culture won't be back until Monday, she is certain it is another bacterial infection. She wrote a prescription for antibiotics (which, by the way, cleared up my throat within 48 hours -- sweet relief!)
After the examination, I began the CFS conversation. I began by pointing out that this was the 2nd time in two months, and the 5th time in the last 12 months that I've needed antibiotics to clear a throat infection. Then we discussed some of the other chronic health issues that have arisen in the last year -- all of them documented in her records. With my recent health history fresh in her mind, I brought out a copy of my recent blood work from Dr. W, and showed her only one result: the Natural Killer Cell activity test, showing me at 8 on a range of 8-170.
I explained that NKC activity is thought to be one of the key indicators of ME/CFS. I quoted a study that found that about 65% of patients who've been diagnosed with ME/CFS have low NKC activity. Then I explained what Dr. W had previously explained to me: that this low NKC activity is allowing infections to flourish -- both viral and bacterial.
During this conversation, I could see that the proverbial lightbulb went off in Dr. L's head. She nodded enthusiastically and seemed genuinely interested.
At the end of this discussion, I said, "Regardless of whether we call it ME or CFS or whatever, I need to know that you understand that this is a chronic condition that may require ongoing treatment and may require you to work with Dr. W. Are you on board with that?"
She said that she was, and I believed her. So, it was a relief for me to finally know that Dr. L is a member of my team now and understands her role. This may not be a permanent position -- I may reevaluate in 6 months or a year, but for now I'm relieved to be able to keep the GP that I've had for so many years. And I like to think that I've done my small part in educating Dr. L, so that her next ME/CFS patient might have a slightly better experience.