Nancy's Case History

[Nancy1]

I am 61 years old, married 14 years, live in northern California. I raised 2 children as a single parent. My daughter was killed in a Ford Bronco II rollover in 1988, age 18, her first year of college. Her boyfriend was driving, was not wearing a seat belt. My daughter was wearing hers. He lived, she died. So I learned that life is not fair a long time ago. My son lives in California but is married to a woman in Mexico. They have a son, age 2, and expect another baby in April. He is trying to bring his family to the US but this will take a long time. I have been to Mexico many times to see them, and am very careful: no water, no ice, no fresh fruits or veggies, no milk products, no eggs. Had never been sick there.

My only sister, in West Virginia, was diagnosed with metastatic melanoma. They gave her 6 months to live in July 2005. So far she has beaten that. She is taking experimental chemo. My father, also in WV, age 98, fell and broke 2 ribs and 2 hips on Jan.16, had hip surgery Jan. 23 (which no one expected him to survive), but so far is surviving. I want to come help, but my sister is concerned that I could be contagious to her and to my dad, so she says no. I am very sad about that but understand.

I retired in June 2005 after 28 years of being in charge of labs in sewage treatment plants. In all those years I was very healthy. Washed my hands lots, no bugs. Never heard of cdiff. Had a thyroid nodule removed in 1991 and take synthroid. That's the only health concern I had until Oct. 2005.

On Oct. 21 I ate some pumpkin seeds (from an open bin in my local grocery store). Unknown what was in them, probably not cdiff. Started having the worst diarrhea I'd ever had, lots of pain, up all night, D every 15 minutes. After 24 hours it changed to blood every 15 minutes. I took a Cipro which I had at home (I take these to Mexico but had never needed or used them). Didn't help. Went to the ER. Doc gave me levaquin. D stopped. Thought I was done. Went on a long-planned trip to Mexico on Oct. 28.

Was still nervous, so ate much less than usual there. D started again Oct. 30. Had a very little bit of fish and pasta in a restaurant the night before. So I don't know if this was a relapse or something from the restaurant. Tried Pepto, didn't help. Tried Cipro, didn't help.

Back to US on Nov. 2. (It's scary going thru customs when you don't know when you have to run to the restroom.) Saw my primary care doc. She said it's not bacterial, since it's not responding to antibioitics. (Haha.) She put me on the BRAT diet, plus lomotil, acetominophen w/codeine, lactobacillus. Had horrible D for 2 weeks while doc kept trying to convince me I was getting better. Felt like a bad patient because I wasn't! Lost 20 pounds in a month. Had horrible hemorrhoid pain, as bad as abdominal pain. Had a vaginal itch which turned out not to be yeast (I think it was due to D exploding all over everything). Finally saw a GI doc Nov. 18. He did a sigmoidoscopy, diagnosed pseudomembraneous colitis and cdiff. He also sent me to give a stool sample, which I just learned yesterday was negative!!!

Gave me 10 days of Flagyl 500 mg 3/day. Made me queasy, hard to eat (I may have lost more weight but some days I get too depressed to weigh myself), but I finished the course. Relapse after 3 days. Gave me 250 mg vanco 3/day. I like vanco, feel so much better, but it's still hard to gain weight. Lots of hemorrhoid pain still, taking hydrocortisone cream and sitz baths. After 3 weeks of vanco, tapered to 2/day for 4 days, then 1/day for 4 days. Relapse after 5 days. Very discouraged. Horrible relapse, with fever, nausea, D every 10 - 30 minutes much of time, lots of pain. Lost another 7 pounds. They wanted to get a positive stool result before giving me any more meds. (They eventually gave me cholestyramine which made D "only" every hour or 2.) Three days of --- (no profanity)!! This stool result was positive, thank goodness (to my surprise, after reading here that you need to wait 10 - 14 days for a good stool result).

My doc says I am an "exceptional case" and also that most people who relapse wait about 2 weeks. (Is this true?) He put me on Flagyl 500 3/day and vanco 250 3/day. The Flagyl made me more queasy than before. After 4 days I couldn't eat at all. So I stopped that. Am now on vanco waiting for my doc to consult an infectious disease specialist. I also have my own appointment with an ID doc next Thursday. I figure I need all the help I can get.

And I am so lucky to have found this site. You folks are saving my life.

[Nancy1]

Today I went to see an infectious disease doc for the first time. She is a young woman and I like her. After I gave her my case history, I said that I would like to try pulsing next and gave her a copy of Lauren's regime, plus a reference that I had gotten from this site. She said she would look at it. She prefers that I now go to vanco 4/day (from 3/day now) and then taper more slowly. But she is willing to discuss it after she looks into the pulsing info I gave her. For right now, I don't want to change anything, because it still looks like my dad may die very soon, and I will have to get on another airplane shortly. Meanwhile, the doc gave me enough vanco to get me through another trip to West Virginia.

By the way, I also asked about rifampin. She does not recommend it, because she said that it can inflame the liver and can have interactions with other drugs.

[Nancy1]

My dad died in West Virginia on Feb. 3. We had been to see him a few days before he died, and then went back for his funeral. He had a good long life, but of course I miss him every day. So I learned that I can fly on airplanes with this beast and vanco, as long as I have an aisle seat for bathroom runs. I stayed away from my sister and didn't give her cdiff, thankfully. She is still fighting for her life, as her melanoma continues to spread. Her latest treatment didn't work, so she started a new one last Monday.

My good news is that my son and his wife have a new baby boy, born in Mexico on March 28. Everyone is fine. Because she had a C-section, I can't go there until about July so I don't give cdiff to her or the baby.

My ID doc agreed that I can try Lauren's protocol for pulsing, so I started that in March. I've just finished the 2 days on vanco, 3 days off, and feel okay, the same on days on and days off. I've even gained about 5 pounds back of the 27 I lost, thanks to Cindy's telling me about reuteri.

My husband needs a pacemaker, and originally his surgery was supposed to be in April. However, his cardiologist just postponed things, so it looks like it will be in May. It should be minor surgery, and the cardiologist said I can see him in the hospital (he'll just be there one night) and can take care of him at home. Because he'll be on antibiotics, I'm terrified of giving him cdiff, but will take extra hygiene precautions on top of the ones I'm already doing. I also worry that I could be having a relapse at that time, but who knows. I'll cross that bridge when I come to it. My ID doc said to keep going with the pulsing.

I recently found that I have a basal cell carcinoma, the least serious kind of skin cancer, but compared to all the other bad things in my life, this is nothing. I have an appointment in May to have it all removed. Onward...

[Nancy1]

Hurray, I've made it to the "magic" 70 days off of vanco!! I don't yet want to put this under Success Stories, because I am going to do a lot of traveling in the next few months and worry about getting sick again. But it's wonderful to have made it so far. I used Lauren's pulsing protocol, plus I added 3 cycles of 5 days off/1 on and 5 cycles of 6 off/1 on. I'm taking all the probiotics that I have all along, and probably will continue those a while. I still have pain and some mucous, plus occasional D (mostly when I travel), but no major flareups in the 70 days.

My sister died in West Virginia of her melanoma on June 6. I am mostly traveling back there. I'm trying to help my mom move to assisted living with her sister in Chicago. Cleaning out her house, where she has lived for 53 years, is a huge task, and then we have to sell it.

My husband didn't need a pacemaker, thankfully. I worry that if he has to take antibiotics, that he may end up with cdiff because of his exposure to me (especially since at the beginning, when my doc said it wasn't bacterial, I wasn't too careful about hygiene).

Through all this time this site has been a lifesaver. Thank you all for so much help.