I offer this as a “nightmare” story of poor medical care. I found your website a few months ago and have used it several times to offer suggestions/questions to doctors who ignore me. Thank you for your website it is most useful!
I had back surgery in January 2020 and came home with C. diff. Massive doses of antibiotics were along with hospital-acquired infections from exposure to others in the hospital were likely the cause. Hydrocodone for back surgery pain masked my C. diff symptoms for eight weeks; But, the good news was no constipation from the Hydrocodone. The prognosis was my primary care doctor ordered the test which came back positive in the Spring of 2020.
My primary care started me on Metronidazole 500 mg which made me lose taste and I became violently ill. It’s a cheap and outdated treatment but all that my insurance would approve. I’m not convinced that throwing up medication could do much good. So then I was taking Xifaxan 550 mg for two weeks. Insurance wouldn’t cover it, so I got my Rx from a Canadian pharmacy, which got it from India. The cost is $2000 in the US and only $180 from India. It didn’t work. Then I was placed on Vancomycin for ten days, and again for 14 days, then I was referred to a GI.
The GI put me on Vancomycin for 20 days with a taper off for two weeks then repeated the 20 days, and then prescribed Dificid a new medication for c-diff ($3000 for 10 pills). Insurance covered this treatment. That didn’t work so he put me back on Vancomycin 125 mg. After a year on Vanco, he then referred me to another GI.
This new GI left me on Vanco and did an expensive outpatient hospital upper GI. I had some acid reflux but overall I was ok. Then the new GI wanted to do a Fecal Microbiota Transplant (FMT) but COVID caused stopped shipments of fecal matter from OpenBiome as they did not know how to get COVID out of the fecal matter.
I waited for about nine months and was stabilized on Vancomycin, and had an FMT in May of 2021 when Open Biome started shipping again
On the first day post-FMT, I had no bowel movement (BM). On the second day I had a soft BM, and on the third day a loose BM, the fourth day looser BM, and on the sixth and seventh it was watery and frequent diarrhea 12 times in one day. My hospital costs were about $12,000 billed to insurance and the Doctor billed $5,000 to insurance.
I started back on Vancomycin @ 250 mg 4x/day. Three days later the FMT GI doctor ordered a stool lab study (should have been done BEFORE he put me back on Vancomycin) and it came back negative for C. diff yet all C. diff symptoms are still present. I think the neg C. diff result was a false negative. My wife was with me at my last appointment when the GI told us the outcome of the FMT was a big disappointment to him (as if it was probably my fault; Blaming the patient is popular. I’m not sure why).
The GI then dismissed me and kicked me down the road, with no specific plan of treatment but to just find an infectious disease specialist. It seemed he was a “one-trick” pony!
I went back to see my primary doctor. (new as my other PCP for 8 years retired) My primary care doctor referred me to University Medical Center. After a week they called and said the wait time was 6 months and they could get me in by November or December 2021.
I talked to a former medical colleague who checked with a GI/ID department at a university medical center. They told my friend to have me start on Vancomycin 500mg 4x/day and offered to see me at their medical center if I couldn’t find a GI/ID person in my area.
The 500 mg Vanco worked great! Nearly all symptoms were gone. But when I started to taper off to 3x/day the symptoms came back. I discussed my situation with a nutritionist and she suggested a probiotic resistant to antibiotics.
Meanwhile, I then researched every infectious disease specialist in the greater DFW area. I was proactive and called give clinics to see if they were taking new patients by referral. Did they deal with C. diff? Were they part of a larger practice with multiple doctors who could address and consult on my case? My primary care doctor made a referral, and I was able to get an appointment within two weeks. I still had the university medical center as a backup if the infectious disease MD didn’t work out.
By the way, 125mg Vanco costs about $2,200 for one month. My insurance covered it. I paid a $10 copay. Generic Vanco 500mg 4x/day for 20 days costs $9,300 insurance paid. The pharmacist mentioned the brand name costs about double the generic. Fortunately, my insurance has been picking up all the bills except copays.
As of the end of July, I’ve located an infectious disease specialist who appears to be much better prepared to treat C. diff than previous physicians. He has tapered me off from 500mg x 4 per day to 125mg/day with some success. If I stabilize over the next month he will schedule a second FMT with a local colorectal surgeon with extensive experience with FMT’s. After 18 months with educational support from PLF to guide my search for medical care the outlook is hopeful. I encourage all with C. diff to be assertive and selective in the treatment they accept and don’t hesitate to move on to new providers if what you are getting is not informed, compassionate and effective.