I've just come from my GI doctor this morning. I am so thankful for him. He's the only one who supported me as far as the medical field is concerned and the only one who really listened during the last year that I've had C-Diff. For those of you who don't know, I contacted it either while my mother was in the hospital or at a nursing home during May of 2006. I took two rounds of Flagyl with no results, my doctor thought it was just nerves so I found a GI specialist and he quickly found C-Diff again and put me on Vancocin. I've been through four rounds of Vanco in the last year and with this last round he allowed me to medicate myself while he kept a close eye on me. This round lasted from Christmas through May 23rd. I did not decrease the dosage in two week periods of time as is common.
I also began taking VLS#3 along with Primodolphilis. In the beginning I took as many as I could get down in a day. I found I could only process about 12 of them in combination. Any more and it had an adverse effect. The first of April, I cut down to one Vanco a day and took the 12 probiotics every day. Finally the first of May went to one Vanco every other day along with the probiotics and followed that protocol for two weeks, then one Vanco every three days until I quit altogether on the 23rd.
There have been some rough days, I've had pain, but I noticed a definite pattern my body was following. I'd have pain one day, then next day a few more stool movements and then 2-3 days of almost normal stools. Now I have maybe one bad day a week.
The GI specialist and I both know that I can relapse and I have Vanco on hand, he advises taking the same amount of probiotics for at least the next 60 days before tapering off and down to 1-2 a day. I've gained weight, most foods agree with me although a few have proved too rich and are followed by nausea. I am hoping and praying it's over.
While I have not posted a lot, this board and its members willing to share experiences have been invaluable to me. I've tried various things that have worked for other people and almost always with some good results. My own recipe was the VSL#3. That's when things appeared to turn in my favor. Maybe it was just time. One thing is for sure - C-Diff leaves when it wants to although I think giving into it makes it worse. I tried to continue all activities inasmuch as possible and to lead as normal a life as possible. It wasn't always easy and some days it was impossible, but the next day I went back out to try again. The day I weighed in at 120 lbs. after being down to 100 lbs. was a triumph and a really happy day!
Best of luck to everyone. You will get over it. Have faith, patience and don't be afraid to try different things after making sure it isn't harmful.
On my way
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Bobbie
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Marnie,
Good for you. Let's hope your bout of C. diff. is over. Sounds as though it is. C. diff. is truly a disease of "T&E" -- trial & error.
VSL3 has some research "behind it." Many probiotics have little. It is very expensive, but I think anyone on the board would agree it's worth anything to get rid of C. diff. (I've tried to get a "deal" on it for people on this site, but the product rep. never calls me back.)
Pls. let us know how you are doing & post to support others. Again, congrats.
Good for you. Let's hope your bout of C. diff. is over. Sounds as though it is. C. diff. is truly a disease of "T&E" -- trial & error.
VSL3 has some research "behind it." Many probiotics have little. It is very expensive, but I think anyone on the board would agree it's worth anything to get rid of C. diff. (I've tried to get a "deal" on it for people on this site, but the product rep. never calls me back.)
Pls. let us know how you are doing & post to support others. Again, congrats.
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ldyhawkem
- New User
- Posts: 16
- Joined: Sat Oct 21, 2006 10:52 pm
C-Diff is trial and error, or as my doctor says, maybe a little voodoo is involved now. No one is sure, but whatever cures it. VSL#3 is expensive and I've actually found ordering it right from the manufacturer is cheaper than going through a drug supplier that might carry it. It still is not cheap, and honestly I took a part time job to help pay for it. But until I started taking it, I was having only temporary success, so I am most grateful for it at just about any price!
I have to say though my doctor has been amenable to anything I wanted to try in the area of actual medications. He did not support a complete change of diet for the simple reason he felt it would be too daunting to get back to my regular diet if/when the C-Diff did decide to leave. But if I wanted to try, he was willing. He listened to all the research I did, did his own research and I think he has even been reading here. He wants to learn all he can about the new strains going around, so he was a great help. He's one of the few doctors I know in my area that are willing to concede this new strain(s) of it needs a lot of research and a lot of work. He's very active in the community so just maybe his voice will be heard. Every little bit helps.
I have to say though my doctor has been amenable to anything I wanted to try in the area of actual medications. He did not support a complete change of diet for the simple reason he felt it would be too daunting to get back to my regular diet if/when the C-Diff did decide to leave. But if I wanted to try, he was willing. He listened to all the research I did, did his own research and I think he has even been reading here. He wants to learn all he can about the new strains going around, so he was a great help. He's one of the few doctors I know in my area that are willing to concede this new strain(s) of it needs a lot of research and a lot of work. He's very active in the community so just maybe his voice will be heard. Every little bit helps.
Marnie
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ldyhawkem
- New User
- Posts: 16
- Joined: Sat Oct 21, 2006 10:52 pm
35 Days and Counting
Just checking in and, Bobbie, I will try to get my doctor's permission to post his name and contact information here. He knows I relied heavily on support from this group and actually, I think he was accessing it too!
So far, all is good as I continue along the recovery trail. I'm still taking 6-8 VSL#3 each day along with some of the Reuteri. Right now I am in the middle of a summer virus with a nasty cold. It is getting better, but I have noticed some small stomach problems. Outside of the fact I've had almost no appetite with this cold and food tastes horrid, I have been in the bathroom a bit more than usual, but no cramping, no loose stools. I am assuming at this point it is part of the virus and am not overly concerned about it. I did wonder, however, if anyone noticed with subsequent illnesses after C-Diff, a return of any of the symptoms without actually having the disease again? I hope all that made sense.
Best of luck to everyone. Keep up the good fight!
So far, all is good as I continue along the recovery trail. I'm still taking 6-8 VSL#3 each day along with some of the Reuteri. Right now I am in the middle of a summer virus with a nasty cold. It is getting better, but I have noticed some small stomach problems. Outside of the fact I've had almost no appetite with this cold and food tastes horrid, I have been in the bathroom a bit more than usual, but no cramping, no loose stools. I am assuming at this point it is part of the virus and am not overly concerned about it. I did wonder, however, if anyone noticed with subsequent illnesses after C-Diff, a return of any of the symptoms without actually having the disease again? I hope all that made sense.
Best of luck to everyone. Keep up the good fight!
Marnie
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Bobbie
- Administrator
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- Joined: Sat Aug 06, 2005 8:00 pm
Marnie,
Do let us know when your doc. gives permission to post his name. We need more referrals to docs. who have experience with C. diff. We hope more docs. check the site.
Many of us still have "off" days after C. diff. which could be related to food or other illnesses. Those of us with IBS (a fairly common problem after C. diff. have this "on and off." Still better than C. diff., however.
Glad you are recovering from summer cold. They can be tough to shake. See FAQ-Infections for tips on treatment w/o antibiotics.
Glad you are doing so well. VSL3 is expensive -- hve tried to get "a deal" for site members, but product rep. never returns my calls. You are taking a lot of it. They have pharmacists on staff; you might call & talk to one of them to see if you could reduce dosage. Toll-free # is on site under Probiotics or just google.
Do let us know when your doc. gives permission to post his name. We need more referrals to docs. who have experience with C. diff. We hope more docs. check the site.
Many of us still have "off" days after C. diff. which could be related to food or other illnesses. Those of us with IBS (a fairly common problem after C. diff. have this "on and off." Still better than C. diff., however.
Glad you are recovering from summer cold. They can be tough to shake. See FAQ-Infections for tips on treatment w/o antibiotics.
Glad you are doing so well. VSL3 is expensive -- hve tried to get "a deal" for site members, but product rep. never returns my calls. You are taking a lot of it. They have pharmacists on staff; you might call & talk to one of them to see if you could reduce dosage. Toll-free # is on site under Probiotics or just google.
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