Amanda 2's Case History

[RN092504]

I'm an ICU nurse. I had a misdiagnosed ear infection that got increasingly worse throughout June until I went to see another doctor, by that time my ear drum was bulging and was about to burst. The first line of antibiotics that were prescribed didn't dent the infection. I was in severe pain, could barely hold my head up. But I did manage to continue working my nighshifts in the ICU where I normally take care of C.diff patients all the time.

I was switched to Avelox after no improvement from Augmentin after a week of therapy. Five days into the Avelox therapy, the diarrhea hit me like a ton of bricks. Now, being a nurse and being around c.diff most of my career, I knew what it was. I knew immodium wouldn't help, but I humored my doc, and took some anyway. When it didn't work, I demanded a c.diff toxin test. My doc honestly left me a message saying "I can't believe you were right, but you were, you're c.diff positive". Now, as a healthcare worker, I cannot work in direct patient care unless I can produce two c.diff negative stools within 24 hours. So this diagnosis is having a huge drain on my finances.

Prior to the ear infection which led to the c.diff, I was a healthy 23 year old. I was a yoga fanatic. I was swimming laps two -three times a week, eating healthy, all that good stuff. This disease has devestated me in every concievable way.

After a few days of Flagyl, I started feeling better and went on a weekend trip. one day into the trip, I was in the hospital with SEVERE cramps, dehydration , fever, the works. After a night in the hospital out of town, I was discharged to be admitted to my local hospital where I spent five days on IV fluids, getting IV morphine for the pain, and pooping my guts out. There I was put on vanc.

So that takes me up to about a month out of work. About two weeks after being out of the hospital, I felt like I never left. I was unable to get out of bed (except for mad dashes to the potty), I wasn't eating, I felt like I had been hit by a truck. No one at my doctor's office would give me any sort of answers about c.diff. They didn't know anything about it. So I switched to an internest at the hospital where I work.

I trust this doc more and he calls me at home and if he doesn't know an answer to my question, he looks it up or calls someone that does.

I also see a GI doc.

So I was on vanc for two months, in addition to Lactinex. They also suggested benefiber to bind the stools. But even after I had c.diff negative stools (the first two weeks in September), I still had diarrhea and was still weak, not eating, and still had fatigue. I had a sigmoidoscopy on 9/9 (c.diff negative), and an EMG (it involves sticking 4 inch long needles in your muscles to check electricity conduction) to make sure my fatigue wasn't being caused by something even worse, like MS. Nothing was taking care of the diarrhea. No food, no liquid, no meds, nothing made it worse or better, except eggs (like scrambled eggs), that absolutly killed my guts and almost sent me to the hospital. I can eat any other dairy products, but I cannot touch cooked eggs.

So I had another scope last week (10/3), this one showed inflammation (duh) and the stool sample was c.diff positive. My doc thought it might have been a fluke, so he just restarted the probiotics, and retested me today, and suprise, the test was c.diff positive.

So now I don't know what to do. I see my doc tomorrow. I see an I.D. specialist Monday. I have been off work for three months. I am financially drained. Between the doc copays, the meds, the other 'specialty products' cleaning supplies etc. And all this on half my normal income (from my work's disability benefits). None of it is steady money, every week I have to provide evidence that I'm still 'disabled'. HR at work is breathing down my neck, although infection control and my direct supervisors know what I'm going through and are very supportive. I practically have to poop in a cup for the disability people and the HR people for them to stop harassing me on a daily basis.

I still suffer from fatigue. I eat once a day if I can choke it down. I've lost 20+ pounds. I can't do yoga, I can't hold the positions. I can barely walk stairs without having to rest. I'm depressed. I got married just last year and this is taking a toll on my young marriage. My husband is supportive, but he and I can only take so much. The bills are piling up.

I don't know what I can do. I need money. I can't get another job, it will void my disability. HR at work will take nothing less than a full time, hands on RN, believe me, I asked two months ago. And I honestly worry about losing my job if I can't eradicate this bacteria. I love being a nurse. I can't imagine any other career. It breaks my heart.

If anyone has any ideas or thoughts or words of encouragement, believe me, they would be greatly appreciated. I'm at the bottom right now. I see no hope in this situation.

Thank you,

Amanda, RN

[Lauren]

THE BELOW FROM AMANDA - MOVED FROM ANOTHER SPOT

Its been awhile since I've updated, so its time.


I was hospitalized November 1-4th with the cdiff. I needed fluids and pain relief, and they ran a TON of tests. Endoscopy (going down your throat into your stomach and small bowel), a CT of the abdomen and pelvis, tons of bloodwork, and a small bowel series (barium swallow). I also had an ultrasound of my upper abdomen. And the results were interesting. I have a sick gallbladder which is filled with sludge, but no one wants to touch it due to the current cdiff infection. I was also definitevly diagnosed with fibromyalgia, widley believed to be a direct result of being infected for so long. I was ruled out for parasites, giardia and inflammatory bowel diseases. So other than the fibro and a really sick gallbladder, I just have cdiff. Which I said from the beginning.

So I've now been on vanc for a total of 8 weeks straight (not including my first round). I was initially on 125mg QID, but I honestly didn't feel better two weeks into it and persuaded an ID to up the dose to 250mg QID. The two weeks after hospitalization, the pain was much more unbearable, and my appetite still sucked.

The past 10 days or so, I've had more energy, less pain, and more appetite, although I still have the same diarrhea 3-4 times a day. I keep a close eye on what I eat, and I honestly haven't noticed anything that increased the diarrhea, other than really greasy foods (I had a mad McDonald's craving the other day and gave in...paid the price.) Also, one of my migraine meds was discontinued, the overwriting thought being that I was overmedicated and it was causing the fatigue. So that may be a source of the decreased fatigue.

But I have also started treatment for the fibromyalgia, including chiropractic care and physical therapy, in addition to taking Elavil (a smaller dose than used in depression) at bedtime, along with Ambien (a sleeping pill) to help me sleep. Apparently non-restorative sleep and restless leg syndrome are both hallmarks of fibro, and treating those issues (which I had in a severe way) has helped me sleep more, and has increased the quality of my sleep, thus decreasing the fatigue.

My migraines (which are also a part of fibro, but I've had them for nearly 10 years) have increased, through. In intensity and frequency. I spend 3-4 days a week in a dark, quiet room trying to get rid of the migraines. It interferes with eating too, as I often get nauseated. So I'm still working on that problem.

I also caught some virus at the doctor's office, and spend last Wednesday and part of Turkey Day in bed with a fever, blowing up snot. I still have congestion and still am blowng up snot although the fever is only low grade now (compared with 102 last week). The docs have brought up the idea of needing to treat this potential infection with antibiotics, if I do not clear it myself by the end of this week. I posted a question about it on 'General Cdiff discussion'.

I still continue to educate everyone I can, including my nursing classes in my online RN-BSN program. But I'm sad to say that unless it is happening to them, no one really cares. Thats why I'm thrilled with the Oprah email campaign this week.

I also contacted a local reporter for my hometown newspaper, the Pittsburgh Tribune-Review, and the article about cdiff that I was interviewed for ran front page toward the end of October. There is a link on this discussion board. The night that the newspaper story ran, I was interviewed on a local Fox affiliate and ran as the top story. So I definetly encourage anyone with this or with a family member with this to contact local media with your story and see where it goes. Human interest stories and tales of woe are always good features, and God knows we have some pretty awful stories to relate. And the more attention brought to this infection, the better. I mean, any publicity is good publicity, and if people in the mainstream hear more about it and how it is contracted, they may advocate for themselves more, like insisting on good hygiene practices at their health care facilities, and maybe the drug companies or researchers can be coaxed into looking into more treatments.

Also, people should be aware of the fibro connection. Alot of the symptoms we experience are also found in fibro, and finding treatment for those issues has greatly benefitted me. I'm not saying that if you have this you have fibro, but the possibility is there if you are female, of childbearing or perimenopausal age, and have experienced a traumatic event (car crash) or serious infection. The symptoms are extreme 'deadening' fatigue, all over muscle aches and pains, non-restorative sleep (you wake up after all night sleeping and do not feel rested),IBS is associated, bladder problems are associated and other symptoms can be seen, like hair loss, memory difficulties, concentration difficulties and the like. And like many will tell you on this site, you can have just plain cdiff and experience these symptoms also. One of the telltale signs of fibro is hardened areas of muscle tissue at predictable locations, around the neck, on the back, back of knees, elbows and other areas. I feel that its just worth thinking about as a possible diagnosis in addition to the cdiff if you experience some of the prevalent symptoms.

Feel free to email me, or contact me through this site if you have any questions about anything I have written.
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I will survive ~AAM