Wednesday, September 10, 2008

A Brief History

I've seen so many doctors that I started keeping a written record of who said what when. I'll post it here because I'm too lazy to re-write it in a more interesting tone:

The week of Thanksgiving 2007, I came down with what I thought was a cold. Symptoms include extreme fatigue, headache, dizziness, ear pain, and sore throat. In December I was given three rounds of antibiotics (azithromycin, then levaquin, then azithromycin again). I also had a sinus CT and saw an ENT. No sinus involvement was detected. By January 8, my ear pain was gone, but other symptoms remained. I saw Dr. Cairns in Infectious Disease. Lab tests showed “no sign of infectious disease.” My former primary care physician, Dr. Cynthia Smyth, seemed at a loss and vaguely annoyed by or uninterested in my case.

On January 22, I saw a new primary care physician, Dr. Pamela McDonald at the Polyclinic. Lab tests showed a low ferritin level (12), low vitamin D levels, and B12 levels on the lower side of normal. I started taking an iron supplement, increased my B12 supplement frequency, and began taking a 50,000 IU once-a-week vitamin D supplement. I also began acupuncture treatments on the recommendation of a naturopath.

Symptoms continued without relief. I always felt much worse after any kind of physical or mental exertion. On March 6, I saw Dr. McDonald, who said she wasn’t sure what was wrong and referred me to Dr. Hammond. On March 10, I discontinued acupuncture treatments, as I did not notice any results.

On March 11, I visited Dr. Paramita Mukherjee at UW Internal Medicine for a second opinion. She ordered new ferritin and vitamin D tests and was unwilling to consider other possibilities until the results came back. Ferritin was now up at 48, and vitamin D was “a tad high.” Still, even with improved lab results, my symptoms are no better. Dr. Mukherjee said I should just wait a few more weeks to see if I eventually feel better. This seems unlikely at this point.

On March 19, I saw Dr. Arvin Mokha, an allergist at the Polyclinic, to determine if my symptoms could be the result of an allergy. While I do have non-allergic rhinitis, all standard allergy tests came back negative.

On March 20, I saw Dr. William Hammond, a hematologist at Minor and James. He ran several tests. On April 11, I returned to go over the test results. All results were normal. He suggested that I might be convelesing from a bout of acute mono from November. He sent me back to Dr. McDonald.

On April 21, I saw Dr. McDonald, who believes at this point that I have chronic EBV infection or chronic fatigue syndrome, which she asserts are one and the same. She says that most patients with chronic EBV get well within 2 - 3 years at the maximum. I am confused because some of the literature I've read online suggests that chronic EBV and CFS are not identical. Dr. McDonald suggested that Wellbutrin or Provigil might help improve the fatigue (they didn't)....

At this point, my pre-written history ends. So here's the quick summary of what's happened since:

In May I saw yet another doctor (Dr. Samson) at the UW. She confirmed the diagnosis of CFS, because everything else she could think of had been ruled out. She was certainly nicer than the other internists I'd seen, but was unable to offer much more than sympathy and a referral to the Chronic Fatigue Clinic at the UW, which has a waiting list of more than six months.

I kind of drifted along for a while, hoping to find someone who would offer a possible solution. In August, I saw Dr. R at the Healing Arts Partnership. He's an MD who works in conjunction with an ND, and he specializes in CFS, fibromyalgia, chronic Lyme, and other complex/chronic conditions.

He follows the general protocol of Dr. Jacob Teitelbaum, who wrote
From Fatigued to Fantastic
, a well-known book in CFS circles. Dr. R immediately started looking at things that my other doctors hadn't considered, and I'm cautiously optimistic about my chances for improvement.

1 comment:

  1. Dear Suzanne,

    I've read your entries and I am amazed at your understanding of all that is going on. It is difficult to imagine the suffering you are going through. I hope and pray that you will soon get some relief I think of you and Nick every day. You are in my prayers.


    Grandma L.