Posted 9/23/2014 11:39 AM (GMT -7)
Hopefully this is the right place for this - I haven't specifically been diagnosed with CFS, but there appears to be a lot of overlap here. Sorry if this is a convoluted and drawn out explanation, but it's gotten to the point where it is too difficult to explain simply.
After several years of having no insurance, I got a new job that offered a plan - which went into effect about a year ago. I spent a lot of time researching what I could before picking my primary care doctor, and the guy I went with was (and still is) very well reviewed online.
On my initial visit, I started talking with him about a treatment plan I was working on with an urgent care doctor for Benign Prostate Hyperplasia - which was diagnosed because I was having problems with extremely frequent urges to urinate.
My new doctor skipped over that completely, and instead wanted to know why I sounded so nasally when I talked.
Long story short - he said he believed that there was nothing at all wrong with my prostate, and that he suspected CMV. He said that the virus attacks the mucous membranes, and that my urge to urinate was actually the virus going after my bladder. He also suspected that CMV was the real culprit behind some breathing difficulty (which was blamed on allergies) I was having, and also for some occasional head fogginess (which was blamed on high blood pressure).
The test results came back, and while the IgM on both came back negative, my IgG for CMV came back at 14, and the EBV IgG came back at 8.
He checked my prostate, and said it was fine, and ordered me off the Jalyn I was taking (which was a relief, I was 37 at the time, and I definitely hated the side effects of that), made me stop taking Zyrtec for the allergies (which sucked, but he said that dried out the mucous membranes), and wanted me to go off the blood pressure medicine (that didn't go as well, I am back on it, half dose).
When it came to drugs - he said he didn't want to prescribe me anything for the CMV, because he said that all of the antivirals used for CMV and EBV are the same ones used for HIV (which I do not have), and he didn't want me to be "red flagged" by my insurance. So instead, for the past year he has had me taking Goldenseal every day, and Lysine on alternating weeks.
It has been a miserable year. While I am glad not to be taking so many drugs, and I have to admit that off an on my energy level has improve - they did manage symptoms. Since I am off the allergy medicine (which I was on for years), the post-nasal drip has returned, which seems to have lead to painful bloating and acid reflux. He will give me something for the acid reflux, but for the allergy itself, he still insists I can't take antihistamines or decongestants, and says that it is just viral sensitivity, and should improve as the viral load decreases.
A few subsequent tests have seen that CMV IgG go down a bit, but not by a lot (I can't say how much, because the scale seems to have changed recently). He just wants to stay the course... but I am getting frustrated by how long it is taking. It's gotten to the point where am thinking about getting a new doctor.
For those people here who have had to deal with CMV/EBV for Chronic Fatigue, is this doctor crazy/senile, or is he on the right track, and I just need to stick with it?