Treatment vs. Research

Well, the doctor called today. I must say, a language barrier that causes problems talking in person is even worse over the phone. I don't know what it is about a heavy Chinese accent for me, but I find it incredibly hard to understand. She seems to have a hard time understanding me, too.

Of course, it didn't help that almost as soon as the phone rang the kids got into a knock-down, drag-out, screaming fight over some scraps of fabric. And would. not. stop.

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I think the doctor started out by saying (if I was understanding correctly) that she wasn't sure I fit the normal pattern of mono because most people with mono are in bed pretty much all the time, or need to nap every two hours. I told her that, actually, that pretty well described me for the last few weeks. And that, yes, actually I did have a mild sore throat and most of the other symptoms of mono.

Then she explained that there was no treatment, and doing more tests would be pointless because it wouldn't give us any more information for treatment purposes. She recommended that I stay in bed for a week or two and see if I felt better after that. Obviously, I've already been doing that as much as is possible with three small children. Thankfully, I am starting to feel better the last couple of days, although I still have to take things very slowly and rest a lot.

It took me a while to get it across to her, but I think I finally explained that I understand there's no cure for mono. But because I've had chronic fatigue syndrome and fibromyalgia for so many years, I would be very interested to know if the mononucleosis is just acute Infectious Mononucleosis or Chronic Epstein-Barr Virus.

I think the gist of what the doctor said is that it is possible I have Chronic Epstein-Barr, since many patients with Chronic Fatigue Syndrome do. But the fact that I recently became ill with many of the common symptoms of Infectious Mononucleosis suggests that it is likely a new thing. Especially since she has had several patients come down with mono this spring.

Of course, it does make it more difficult to tell since I have similar symptoms to varying degrees much of the time anyway, and end up quite ill several times a year as a rule. So, really, it could be either way.

She said that there are antibody blood tests that can give clues as to whether it's an acute or chronic infection, but she doesn't know much about them. She is, however, willing to do some research and try to find out.

She warned me, though, that she may not order the tests even if they are available. She told me that she has many patients and works 12-hour days, and it's not normal for a doctor to spend time researching something that won't actually be helpful in treating a patient and making them feel better, when there are other patients who need to be cured or have their symptoms treated. Essentially, it would be robbing resources from other patients to whom it would be of more benefit.

If she does do the tests, it would fall under "research" rather than under "treatment", and because it's not necessary for treatment she may not be allowed to order the tests, and they may not be covered by insurance.

In other words, even though another blood draw could possibly give some answers as to the cause of my chronic fatigue and fibromyalgia, it may not be worth doing because it won't help cure or treat it. Since, of course, FMS and CFS are not curable or treatable.

So trying to get answers about it wouldn't be doctoring. It would be research.