Alexa's Case History

[AlexaMac]

Hi all,

I've been visiting this site for several weeks. It's been very helpful, but I had hoped I would be clear of this infection soon. No such luck. So, I'm officially submitting my case history.

I'm a 44-year old woman who was extremely healthy until last summer. I walked about 5 miles a day, took yoga classes, ate and slept well. (It's incredible to think about how much you take for granted when you're healthy.)

My saga, although not my c-diff, began in early August 2006. I had pain in my lower right abdomen and pressure throughout my pelvis and lower back. For the next two months, I visited several different doctors and was checked for everything from ovarian cysts to arthritis, a hernia, and colitis. I was in the hospital twice, and had multiple diagnostic procedures: CT scans, MRIs, X-rays, internal and external ultrasounds, etc. (God bless Blue Cross & Blue Shield.) Everything came back "normal." Frustrating but in a sense, reassuring

In the midst of this, I developed a sinus infection and was prescribed amoxycillan. I've had these sinus infections for about 10 years, and when I call my GP he just calls in the prescription. I used to think this was a big benefit.

Meanwhile, in mid-October, I was scheduled for a diagnostic laparoscopy with the gynecologist. During the procedure, he noted that my appendix was inflamed and brought in a general surgeon, who performed an appendectomy. The appendix had a carcinoid tumor on the tip of it. It was also “adhered” to my pelvic wall on the right side a couple of inches below the psoas muscle.

I was hospitalized for three days. After the surgery, the back pain (which had become quite severe) decreased significantly. But the groin pain returned on both sides in about a week. Plus, new pain emerged at back of rib cage on the right side.

The amoxycillan hadn't cleared up the sinus infection, so my GP prescribed Ceftin. So I was on broad-based antibiotics before, during and after my hospital stay.

I began having extremely bad diarrhea about a month after leaving the hospital. My doctor suspected c-diff and had me drop off a stool sample. It came back negative, but he said there are a lot of false negatives and put me on Flagyl for 10 days. The diarrhea cleared up very quickly and I completed the course of Flagyl.

But in early December, I was again hospitalized. This time for excruciating back pain, nausea, diarrhea and fever. I was kept in the hospital for 6 days, where I had a battery of tests – CT scan, chest xrays, 3 more MRIs, abdominal and pelvic ultrasounds. I was heavily medicated while I was in the hospital for both the pain and to reduce a high (104+ degree) fever.

On my second day there, I was diagnosed with and treated for C-Diff, and released after a week, once I could eat solid food. Unfortunately, the only private room they could find for me was in hospice. I was a basket case already, and being surrounded by hospice patients was very disturbing.

While visiting me in the hospital, my husband and sister noticed that the nurses marked the c-diff patients with a certain code on the white boards at the nurses' station. There were at least a dozen cases of c-diff out of maybe 36 patients!

When I was released, I was sent home with Vancomycin and Florastor. I was told to do 4 pills on Vanco a day/7 days, then 3 a day/7 days. then 2 a day/7 days, then 1 a day/7 days, then alternating 1 a day on and off/7 days.

After the first 7 days, I didn't feel that the symptoms were going away. So I called my GP and the infectious disease doctor I had seen in the hospital. They said to continue the taper. "Give it time, it will get better."

During the next few weeks, I raised my hand twice, worried that I still had the c-diff and shouldn't cut back. I had two negative tests and my GP told me it was probably IBS. I experienced a little IBS after my daughter was born 9 years ago, and I was certain that this was not IBS. But, I followed directions.

As soon as I was completely clear of the Vanco, the c-diff symptoms came back with a vengeance. I finally tested positive and went back on the Vanco 4 times a day.

That was 6+ weeks ago!

I've seen a local GI specialist who has tried two approaches. He had me go through a colonoscopy prep, hoping to clear out a lot of the bacteria. It certainly "worked," but as soon as its effects wore off, the c-diff symptoms returned. A couple of weeks later, he prescribed Colestid, hoping to bind the c-diff toxins. I've been on it for 2 weeks and haven't seen the symptoms go away. His next step would be IViG. He admitted, though, that he has only done it with one other patient. "He did get better, but he may have been getting better anyway." Great.

Next Tuesday, I have an appointment with Dr. Lamont at Beth Israel in Boston for a second -- hopefully more expert -- opinion.

In addition to the Vanco and Colestid, I'm taking tons of probiotics (Culturelle, Florastor, Acidophillus, and a Jarrod blend), and eating soy yogurt everyday. I've also tried oil of oregano with grapefruit seed oil and betaine hcl. I saw a naturopath yesterday and she suggested that I alter my diet to include lots of wheatgrass, oat and almond milk, more vegetables, soups, etc. She also suggested honey from New Zealand, slippery elm supplements, nori flakes, raw chocolate (unsweetened cocoa) and tea tree oil. My head is swimming.

As I mentioned earlier, this site has been very helpful. Not only in terms of information (I definitely feel I know more from this site than my GP or my GI doctors do), but it has been a boost to my morale. Thank you to everyone who has ever written "It will go away when it's ready, it always does."

I will post again after my appointment with Dr. Lamont.

Many thanks and bless you all!

AlexaMac