Mom mom has been battling c-diff for four months with three relapses. She's almost seventy years old and has been in perfect health until this catastrophy started. She's been hospitalized four times during this period.
Everytime, her GI seems confident she's on a road to permanent recovery only to relapse within days of coming off the treatment. I've read just about every article on this and other sites. Lots of fantastic information that I bring up to her doctors who then quickly change topics by throwing around terminology I don't understand.
I'm at a loss as to what to do now other than find a new doctor. I'm taking her to an ID today but he's just a referral from the ineffective GI.
Given the elderly population in South Florida, I thought there would be plenty of c-diff experts in the area. I've resorted to calling every ID and GI I can find and asking for a referral to a c-diff specialist. I'm amazed how most offices tend to ask "what's c-diff?".
Can anyone recommend a c-diff expert in the South Florida area?
Referral in South Florida
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tangel,
You've gotten right to the "heart" of our problem. Even though C. diff. has grown rapidly (epidemics in both the UK & Canada), many docs. know little about it in the US.
I looked in Doctors & don't see any referrals for docs. in FL. I'd call a teaching hospital & explain your problem.
I'm sure your mother will recover -- esp. given her previous good health -- but C. diff. can be one stubborn disease as you know.
Let us know what you find out about a doc. referral. Best to your mother. I am close to her age now but was 52 when I first got C. diff. & had it for 4 yrs. the lst time (extenuating cirumstances). Had it again after another bout with pneumonia requiring an antibiotic 2 yrs. later. I recovered with "the broth" (Doctors - Dr. Mark Allen - KC.) If antibiotics contributed to her case, try to avoid them for as long as possible unless absolutely necessary. I was able to tolerate a Z-pak last fall after another bout with pneumonia but hadn't taken an antibiotic (except Macrobid for UTI's -- supposedly "safe" -- see FAQ-Antibiotics) since l999.
Best wishes to the both of you.
You've gotten right to the "heart" of our problem. Even though C. diff. has grown rapidly (epidemics in both the UK & Canada), many docs. know little about it in the US.
I looked in Doctors & don't see any referrals for docs. in FL. I'd call a teaching hospital & explain your problem.
I'm sure your mother will recover -- esp. given her previous good health -- but C. diff. can be one stubborn disease as you know.
Let us know what you find out about a doc. referral. Best to your mother. I am close to her age now but was 52 when I first got C. diff. & had it for 4 yrs. the lst time (extenuating cirumstances). Had it again after another bout with pneumonia requiring an antibiotic 2 yrs. later. I recovered with "the broth" (Doctors - Dr. Mark Allen - KC.) If antibiotics contributed to her case, try to avoid them for as long as possible unless absolutely necessary. I was able to tolerate a Z-pak last fall after another bout with pneumonia but hadn't taken an antibiotic (except Macrobid for UTI's -- supposedly "safe" -- see FAQ-Antibiotics) since l999.
Best wishes to the both of you.
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After many calls and finally a reply from a doctor friend of mine, he recommends a "VIP ID doctor" named David Dodson. It appears he's a very prestigous type of doctor such that he only accepts cash (only accepts rich people?) . Perhaps his numerous awards are what allows him to charge $600 for the intial consultation.
At any rate, we're not rich people as she only has medicaire/aarp/etc. We weren't able to see the ID referral today so Monday is now the earliest. I took her specimen to the lab only to find out her GI gave her the wrong sample bottles for the c-diff test (the most important) so I will try to run the new sample in tomorrow morning in hope of the results being ready for Monday's appointment.
If this new doctor doesn't seem to know her stuff, I guess it's time to empty the savings into Doctor Dodson's pockets...
Thanks for this site. Without communities like this, it would feel even lonelier.
I notice I didn't write down her case history... She landed in the hospital after what appeared to be a cardiac condition. She left on anti-biotics and then, a week later, I find myself taking her to the ER with the classic diarrhea, vomiting and fever symptoms. They prescribed flagyl and she left the hospital a few days later.
Two after stopping flagyl, she's back in the hospital with the same complaints. They increased her dosage but c-diff was never mentioned.
This time, one week after stopping flagyl, she's back in the hospital. The admitting nurse gets one whiff and mentions c-diff. That was the first we heard of it and I begun researching. Sure enough, three tests later, it's positively c-diff and candidas. This time they give her a four week taper of vanco.
She had a week of semi-formed stools and was even going to the beach again just as she finished her prescription. Two days after finishing vanco and the same day as her follow up with the GI it hits again. The GI puts her back on vanco and gives a backhanded referral to the ID saying something to the effect of, "he's just going to double your vanco dose".
Alas, this brings me to yesterday when I get back from a business trip. Not only has this ordeal forced her into retirement but I think it may put us both in the poor house.
I'll keep this thread updated.
The one friend I have that has had c-diff before is urging me to go the homeopathic route. Gluten and sugar free diets, high colonics and probiotics apparently worked for him. I don't feel good about playing doctor for mom so I'm still focusing on finding a reputable doctor...
At any rate, we're not rich people as she only has medicaire/aarp/etc. We weren't able to see the ID referral today so Monday is now the earliest. I took her specimen to the lab only to find out her GI gave her the wrong sample bottles for the c-diff test (the most important) so I will try to run the new sample in tomorrow morning in hope of the results being ready for Monday's appointment.
If this new doctor doesn't seem to know her stuff, I guess it's time to empty the savings into Doctor Dodson's pockets...
Thanks for this site. Without communities like this, it would feel even lonelier.
I notice I didn't write down her case history... She landed in the hospital after what appeared to be a cardiac condition. She left on anti-biotics and then, a week later, I find myself taking her to the ER with the classic diarrhea, vomiting and fever symptoms. They prescribed flagyl and she left the hospital a few days later.
Two after stopping flagyl, she's back in the hospital with the same complaints. They increased her dosage but c-diff was never mentioned.
This time, one week after stopping flagyl, she's back in the hospital. The admitting nurse gets one whiff and mentions c-diff. That was the first we heard of it and I begun researching. Sure enough, three tests later, it's positively c-diff and candidas. This time they give her a four week taper of vanco.
She had a week of semi-formed stools and was even going to the beach again just as she finished her prescription. Two days after finishing vanco and the same day as her follow up with the GI it hits again. The GI puts her back on vanco and gives a backhanded referral to the ID saying something to the effect of, "he's just going to double your vanco dose".
Alas, this brings me to yesterday when I get back from a business trip. Not only has this ordeal forced her into retirement but I think it may put us both in the poor house.
I'll keep this thread updated.
The one friend I have that has had c-diff before is urging me to go the homeopathic route. Gluten and sugar free diets, high colonics and probiotics apparently worked for him. I don't feel good about playing doctor for mom so I'm still focusing on finding a reputable doctor...
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I forgot to mention what's been worrying me the most about her lately. She lost over twenty pounds during her previous relapses and only started to put back two pounds during her last week on vanco. Now, she's losing wait again and has officially lost over thirty pounds as of her last doctors visit. She's tall at 5'10" and is looking very thin at 129lbs.
She can't eat much currently other than a little bit of rice. I picked her up some carrots, long-grain brown rice and mineral waters. If this continues, she'll need IV nutriation again just to stop the weight loss as I don't think she can bare much more...
She can't eat much currently other than a little bit of rice. I picked her up some carrots, long-grain brown rice and mineral waters. If this continues, she'll need IV nutriation again just to stop the weight loss as I don't think she can bare much more...
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Tangel- I would recommend thinking about primadolphilus reuteri by Nature's Way (with doctors agreement of course) as it is the ONLY THING that stabilized my weight. I lost 60 pounds initially and food repulsed me TOTALLY. After starting the reuteri within 3 weeks my appetite slowly started returning. It takes time and patient caregivers!
Cindy
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