I am 45 and am in the process of building my own home. I took on this task as my own general contractor which has been and is alot of work to do and now this.....
Just diagnosed 1 week ago today. I had a total abdominal hysterectomy on August 30, 2005. After the operation I never seemed to feel like it was healing properly. About six weeks later I seen my GYN because I kept smelling a funny odor whenever I used the bathroom. He gave a tube of cream. A week later I went back to see him again as my incision was bleeding and very red. He put me on Augmentin for seven days and gave me a prescription for Fluconazole in case I felt a yeast infection coming on. I went to Kansas to visit my son and daughter in-law for Thanksgiving at which time I was taking the Augmentin. While there I slept alot and felt a little achy. Upon returning home on Sunday I started having these mucous/bloody stools and having to run to the bathroom. This went on for several weeks. Called my GYN and he told me to call my PCP. Finally went to see my PCP as I thought it was a long lasting flu. He took stool samples and diagnosed me last Friday with this crazy illness. He put me on Flagyl. After six days of using Flagyl I went to see him again today. Yesterday I was swollen all over my body, especially my hands, and I had a terrible rash. I am also suffering from extreme numbness and tingling in my right hand and arm as well as being severly depressed, tired and achy. He now has me on Vanco. I have only taken two pills and now it seems I am having this weird feeling in my abdomen next to my belly button. It feels like there is something in there and if I move just right it worsens. From everything I read this far it seems like this is going to be a long battle. Please respond with any suggestions of what might help and which doctor I should now go see.
I am normally a very upbeat on the go type of person and nothing keeps me down. This illness is really taking a hit on me though. Really would appreciate any help from those of you who know best what has worked for you.
JoAnn's Case History
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Bobbie
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MOVED FROM ANOTHER FORUM
Posted: Mon Feb 13, 2006 1:20 am
Just tested positive again. Thought I beat it back in January-had one negative test a few weeks after treating the C-diff with vancomycin. Last weekend the smptoms started returning and I just test positive again. I am now back on the Vanco for 21 days again. I get very depressed with this disease-it brings me very down, and my hands and belly are numb.
I also have a bad odor. Does anyone else have these same symptoms?
I hope to one day beat this disease for good.
Posted: Mon Feb 13, 2006 1:20 am
Just tested positive again. Thought I beat it back in January-had one negative test a few weeks after treating the C-diff with vancomycin. Last weekend the smptoms started returning and I just test positive again. I am now back on the Vanco for 21 days again. I get very depressed with this disease-it brings me very down, and my hands and belly are numb.
I also have a bad odor. Does anyone else have these same symptoms?
I hope to one day beat this disease for good.
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Lauren
- Administrator
- Posts: 385
- Joined: Tue Jul 12, 2005 10:23 pm
MOVED FROM A SEPARATE POST
Finished my second course of vancomycin 125mg four times a day for 21 days. After being off the meds for only a week the Superbug is plaquing me again. ID said he will put me on it again, this time for six weeks. I just cant get rid of this bug! I've been battling this disease since Nov 2005 now. I get terrible numbness in my hands and belly. My hands get very swollen and I ache all over as well as the diarhea.
Finished my second course of vancomycin 125mg four times a day for 21 days. After being off the meds for only a week the Superbug is plaquing me again. ID said he will put me on it again, this time for six weeks. I just cant get rid of this bug! I've been battling this disease since Nov 2005 now. I get terrible numbness in my hands and belly. My hands get very swollen and I ache all over as well as the diarhea.
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Lauren
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Contributed by JoAnn May 1, 2006
Most recent positive was on March 3, 06. Seen my ID doc on 3/6/06 and was told by her that my last test was negative. I insisted that I was still positive, but she just thinks I am wacky or a hypocondriac. She told me to keep taking Culturelle and to go off the vanco. Within 1 week I was so sick all over again. I went into my PCP crying hysterically saying, "its back". When I get very active CDIFF it effects my moods and I cry at the drop of a hat. My PCP put me back on the Vanco. Upon arriving home that day there was a message on my machine from the ID doctor stating they had made a mistake and I was positive. I called them back and said "I knew I still had it and was just seen at my PCP". They wanted to know if I wanted to make a follow=up appointment. I said "Yes". I kept this appointment just so I could question her, "how does this happed". At my next ID appointment the ID doc said, "I made a mistake in writing the lab order, I did not put A+B". I demanded a copy of my records. I see on the lab it looks like I was positive for the Cytotoxin B toxin, but not the A."
Had an appointment to see Dr. Bartlett on 4/11/06 at JH. I had been taking 3/250mg of vanco daily since 3/10/06. He recommended that I pulse by taking 1 250/mg of Vanco every other day. I began that the same day. On 4/12 I didn't take any. By 4/13 all the symptoms returned again. Amazing that I relapsed after only this short attempt. Anyways I went right back on the 3/250 of vanco. Have been sick pretty much since. Christina mentioned her doctor from Boston recommended when she relapsed to up her vanco dosage to 2000/mg for 3 days then drop back to the normal dosage. This seemed to help with some of the symptoms. Although Dr. Bartlett is very good and highly recommended it was a 12 hour round trip visit. I had talked to him very briefly 2x over the phone since. He wanted me to do another sample and have the results faxed to him. Of course I did, but it came back negative as suspected. I was back on the meds. Now he says, "I'm not sure its the CDIFF". He has yet to return my calls from last week regarding some blood work that was done and sent to his office. It is so frustrating getting the run-a-around from all these doctors. I feel like they seem to think we are imagining the whole thing, and just wish we would go away.
On May 5th I am scheduled to get the "broth" treatment in KC. I am really hoping this works out and I am finished with this CDIFF. Any recommendations from anyone on this treatment will be greatly appreciated. I am so looking forward to getting off the vanco and returning to a "normal" life again.
Most recent positive was on March 3, 06. Seen my ID doc on 3/6/06 and was told by her that my last test was negative. I insisted that I was still positive, but she just thinks I am wacky or a hypocondriac. She told me to keep taking Culturelle and to go off the vanco. Within 1 week I was so sick all over again. I went into my PCP crying hysterically saying, "its back". When I get very active CDIFF it effects my moods and I cry at the drop of a hat. My PCP put me back on the Vanco. Upon arriving home that day there was a message on my machine from the ID doctor stating they had made a mistake and I was positive. I called them back and said "I knew I still had it and was just seen at my PCP". They wanted to know if I wanted to make a follow=up appointment. I said "Yes". I kept this appointment just so I could question her, "how does this happed". At my next ID appointment the ID doc said, "I made a mistake in writing the lab order, I did not put A+B". I demanded a copy of my records. I see on the lab it looks like I was positive for the Cytotoxin B toxin, but not the A."
Had an appointment to see Dr. Bartlett on 4/11/06 at JH. I had been taking 3/250mg of vanco daily since 3/10/06. He recommended that I pulse by taking 1 250/mg of Vanco every other day. I began that the same day. On 4/12 I didn't take any. By 4/13 all the symptoms returned again. Amazing that I relapsed after only this short attempt. Anyways I went right back on the 3/250 of vanco. Have been sick pretty much since. Christina mentioned her doctor from Boston recommended when she relapsed to up her vanco dosage to 2000/mg for 3 days then drop back to the normal dosage. This seemed to help with some of the symptoms. Although Dr. Bartlett is very good and highly recommended it was a 12 hour round trip visit. I had talked to him very briefly 2x over the phone since. He wanted me to do another sample and have the results faxed to him. Of course I did, but it came back negative as suspected. I was back on the meds. Now he says, "I'm not sure its the CDIFF". He has yet to return my calls from last week regarding some blood work that was done and sent to his office. It is so frustrating getting the run-a-around from all these doctors. I feel like they seem to think we are imagining the whole thing, and just wish we would go away.
On May 5th I am scheduled to get the "broth" treatment in KC. I am really hoping this works out and I am finished with this CDIFF. Any recommendations from anyone on this treatment will be greatly appreciated. I am so looking forward to getting off the vanco and returning to a "normal" life again.
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Lauren
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Contributed by JoAnn June 1, 2006
Woman51960
Well went to KC and seen Dr. Allen for the broth infusion. Had the procedure done on May 4, 2006. They slightly sedated me, so I didn't feel a thing. It only took about 20 min and the other 1.5 hours was coming out of the anethsia. I was back to my son's house by noontime. I was vomiting and very tired, a side effect of the demerol for me. I thought once I had the procedure done I would be off all the meds, including vanco. Dr. Allen said he wanted me to stay on the vanco 3/250 mg for 2 weeks, then 2/250 for 2 more weeks, then down to 1/250 daily for 2 more weeks. He stated if it does not work he would like for me to come back and have it done 2 more times-in the same week. At the first day I felt pretty normal resuming on vanco 3/250 daily. Once I started to taper down to 2/250 a day some of the symptoms started coming back. As of 6/2/06 I am now down to 1/250 per day, and am getting sicker. I do not think it worked for me so far. I am very confused though, as alot of the reading material says that the vanco kills off all the bacteria. I dont understand why Dr. Allen had me continue to take the vanco. I may schedule to have it done again real soon, but this time I am telling him I do not want to take any meds after the procedure is done. This procedure is suppose to change the bowel flora and hopefully the good bacteria will repopulate. I can understand that concept, but do not understand why take the vanco if it is only going to kill off the good bacteria he puts in my body. This whole disease is way too confusing for me. My stomach is currently swollen and I look like I am 9 months pregnant, even though I am not. My neighbor only has to look at me and says, "your sick again". She can tell just by looking at me when the Cdiff is back. It seems my belly, hands, and face get puffy as well. I will keep you all posted as to my next plan. I just want to get rid of this nasty disease!!!!
Woman51960
Well went to KC and seen Dr. Allen for the broth infusion. Had the procedure done on May 4, 2006. They slightly sedated me, so I didn't feel a thing. It only took about 20 min and the other 1.5 hours was coming out of the anethsia. I was back to my son's house by noontime. I was vomiting and very tired, a side effect of the demerol for me. I thought once I had the procedure done I would be off all the meds, including vanco. Dr. Allen said he wanted me to stay on the vanco 3/250 mg for 2 weeks, then 2/250 for 2 more weeks, then down to 1/250 daily for 2 more weeks. He stated if it does not work he would like for me to come back and have it done 2 more times-in the same week. At the first day I felt pretty normal resuming on vanco 3/250 daily. Once I started to taper down to 2/250 a day some of the symptoms started coming back. As of 6/2/06 I am now down to 1/250 per day, and am getting sicker. I do not think it worked for me so far. I am very confused though, as alot of the reading material says that the vanco kills off all the bacteria. I dont understand why Dr. Allen had me continue to take the vanco. I may schedule to have it done again real soon, but this time I am telling him I do not want to take any meds after the procedure is done. This procedure is suppose to change the bowel flora and hopefully the good bacteria will repopulate. I can understand that concept, but do not understand why take the vanco if it is only going to kill off the good bacteria he puts in my body. This whole disease is way too confusing for me. My stomach is currently swollen and I look like I am 9 months pregnant, even though I am not. My neighbor only has to look at me and says, "your sick again". She can tell just by looking at me when the Cdiff is back. It seems my belly, hands, and face get puffy as well. I will keep you all posted as to my next plan. I just want to get rid of this nasty disease!!!!
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Lauren
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Contributed by Woman 51960 Sept 22, 2006
Sick again-In May 2006 I seen Dr. Allen and had the broth infusion done. He had me continue taking the vanco for six weeks. I still felt sick occassionally during those six weeks. Sometime towards the end of June and July I seemed much better and was feeling OK. In July I had a colonoscopy done which was recommended to me by my PCP. In August when I went back to see the gastro he told me my colonoscopy results were OK. I seemed to be doing good too. He put me on Colestid I think just as a precaution for the cdiff and gave me a prescription for Bactrum 10 days. I had an awful infection on the inside of my thighs. He said, "the infection will not go away without an antibiotic". When I went back to see him in September 2006 he said, my biopsy came back positive for cdiff. I was having about 4/5 stools per day, but was not feeling ill. He told me to go back on the vanco, drink kefir, take the colestid and florastor. The following day I started on the vanco. About four hours after taking the vanco I could see and feel my left hand swelling and going numb. I then decided to stop taking the vanco. It seems everytime I get full blown active cdiff I get swollen and puffy. Not sure if its from the vanco or the cdiff. Since then I have not taken the vanco, but I am still swollen, puffy and get feel pretty ill. My eyes feel so heavy and I am tired and weak all the time. Unfortunately, I still have to work everyday to make a living. Most days I feel like crap, but still force myself go to work. I am not really sure what brought out the full blown symptoms, was it the vanco, cdiff or because I had taken the 10 days of bactrum. Someday hopefully I will figure this darn beast out for my own body. For now though I am trying to forge anymore antibiotics including vanco.
So my saga continues. I have been suffering with this on and off now since Dec 2005. I am thinking about going to see Dr. Allen in KC again for another broth infusion. Not sure if it helped or not, but I guess at this point anything is worth a shot!!!
Sick again-In May 2006 I seen Dr. Allen and had the broth infusion done. He had me continue taking the vanco for six weeks. I still felt sick occassionally during those six weeks. Sometime towards the end of June and July I seemed much better and was feeling OK. In July I had a colonoscopy done which was recommended to me by my PCP. In August when I went back to see the gastro he told me my colonoscopy results were OK. I seemed to be doing good too. He put me on Colestid I think just as a precaution for the cdiff and gave me a prescription for Bactrum 10 days. I had an awful infection on the inside of my thighs. He said, "the infection will not go away without an antibiotic". When I went back to see him in September 2006 he said, my biopsy came back positive for cdiff. I was having about 4/5 stools per day, but was not feeling ill. He told me to go back on the vanco, drink kefir, take the colestid and florastor. The following day I started on the vanco. About four hours after taking the vanco I could see and feel my left hand swelling and going numb. I then decided to stop taking the vanco. It seems everytime I get full blown active cdiff I get swollen and puffy. Not sure if its from the vanco or the cdiff. Since then I have not taken the vanco, but I am still swollen, puffy and get feel pretty ill. My eyes feel so heavy and I am tired and weak all the time. Unfortunately, I still have to work everyday to make a living. Most days I feel like crap, but still force myself go to work. I am not really sure what brought out the full blown symptoms, was it the vanco, cdiff or because I had taken the 10 days of bactrum. Someday hopefully I will figure this darn beast out for my own body. For now though I am trying to forge anymore antibiotics including vanco.
So my saga continues. I have been suffering with this on and off now since Dec 2005. I am thinking about going to see Dr. Allen in KC again for another broth infusion. Not sure if it helped or not, but I guess at this point anything is worth a shot!!!
Last edited by Lauren on Sat Oct 14, 2006 11:00 am, edited 1 time in total.
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Lauren
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Contributed by Woman51960 Oct 2,0006
In May 2006 I had the broth infusion done. The doctor sent me home and told me to stay on the vanco for about six weeks. By July I felt much better and thought the cdiff was gone. On the advice of my PCP I was sent to see a gatroentologist for a colonoscopy. At the end of July he performed the colonoscopy. When I went for my follow-up the following week he said everything looked good, but put me on Colestid (suppose to bind the toxins). In beginning of August I went back for another follow-up and told him I had a terrible infection on the inside of my thighs. He said "Nothing topical will cure it, and gave me a prescription for Bactrum, 3x10. " A few weeks later I went back to his office and complained of cdiff symptoms again. He then said, "your colonoscopy biopsy was positive for cdiff" and put me back on vancomycin. I think the Bactrum was a contributing factor to the flare up symptoms.
That following Saturday I started back on the vancomycin, but did not like what it was doing to my body and discontinued using it. I stayed off the vanco for about a week but then noticed I was getting sicker each day. I then started back on the vanco, 3/250 a day. I was very sick for about a whole week and went back to see the gastro. He said, "discontinue the vanco and lets do another colonoscopy". I did discontinue the vanco, but decided I would not do another colonoscopy as I am 100% certain that it is cdiff again, and nothing else. I have been at this for 11 months now and feel I know my body better than the doctor, full blown cdiff again.
At that point I decided to try alternative medicines and researched the Sprenkle protocol. It worked for her. I am now on day 5 of the diet, and it seems to be working so far. I discontinued all the medications I was taking, Estrogen, Colestid and vanco and decided to try other theories.
It is such a beast to conquer this disease and annoying that nobody is listening to find a cure for an illness which is killing thousands. I think the doctors do not want to believe that this strain is stronger than any of the antibiotics they are prescribing for it. For me anyways, I don't think the vanco is effective. I may try the Oil of Oregano next if I am not succesful with the Sprenkle protocol.
In May 2006 I had the broth infusion done. The doctor sent me home and told me to stay on the vanco for about six weeks. By July I felt much better and thought the cdiff was gone. On the advice of my PCP I was sent to see a gatroentologist for a colonoscopy. At the end of July he performed the colonoscopy. When I went for my follow-up the following week he said everything looked good, but put me on Colestid (suppose to bind the toxins). In beginning of August I went back for another follow-up and told him I had a terrible infection on the inside of my thighs. He said "Nothing topical will cure it, and gave me a prescription for Bactrum, 3x10. " A few weeks later I went back to his office and complained of cdiff symptoms again. He then said, "your colonoscopy biopsy was positive for cdiff" and put me back on vancomycin. I think the Bactrum was a contributing factor to the flare up symptoms.
That following Saturday I started back on the vancomycin, but did not like what it was doing to my body and discontinued using it. I stayed off the vanco for about a week but then noticed I was getting sicker each day. I then started back on the vanco, 3/250 a day. I was very sick for about a whole week and went back to see the gastro. He said, "discontinue the vanco and lets do another colonoscopy". I did discontinue the vanco, but decided I would not do another colonoscopy as I am 100% certain that it is cdiff again, and nothing else. I have been at this for 11 months now and feel I know my body better than the doctor, full blown cdiff again.
At that point I decided to try alternative medicines and researched the Sprenkle protocol. It worked for her. I am now on day 5 of the diet, and it seems to be working so far. I discontinued all the medications I was taking, Estrogen, Colestid and vanco and decided to try other theories.
It is such a beast to conquer this disease and annoying that nobody is listening to find a cure for an illness which is killing thousands. I think the doctors do not want to believe that this strain is stronger than any of the antibiotics they are prescribing for it. For me anyways, I don't think the vanco is effective. I may try the Oil of Oregano next if I am not succesful with the Sprenkle protocol.
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Lauren
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Contributed by Woman51960 Oct 13, 2006
Severely relapsed again! I have been doing the Sprenkle protocol for the past 3 weeks. A few days ago I started having horrible belly pains and literally went to the bathroom 20-30 times that day. My bm's had black clots mixed with blood.
I called the ER, and I asked if they had a GI doctor on call that could assist me. She said, No, you would have to see the ER doctor. I asked if he was familar with "cdiff". The nurse said, "oh yes-cdiff is very common and many people have it". I said "yeah but I've had this for over a year now and can't get it to go away and it gets worse with each relapse". She said it would be up to the doctor on call to treat you however he sees fit. Well, needless to say I did not go as I figured it is just a big waste of time. They would only put me back on the vanco and I had plenty of vanco on hand. I just decided to go on 2000mg for 2 days to get it to stop. I will just try to figure it out one day at a time. I am now 24hrs into taking the vanco. I am still having the swollen belly, loose bm's, etc.
Since relapsing and going on the vanco I have ceased the Sprenkle protocol. Not sure what to do next.
Severely relapsed again! I have been doing the Sprenkle protocol for the past 3 weeks. A few days ago I started having horrible belly pains and literally went to the bathroom 20-30 times that day. My bm's had black clots mixed with blood.
I called the ER, and I asked if they had a GI doctor on call that could assist me. She said, No, you would have to see the ER doctor. I asked if he was familar with "cdiff". The nurse said, "oh yes-cdiff is very common and many people have it". I said "yeah but I've had this for over a year now and can't get it to go away and it gets worse with each relapse". She said it would be up to the doctor on call to treat you however he sees fit. Well, needless to say I did not go as I figured it is just a big waste of time. They would only put me back on the vanco and I had plenty of vanco on hand. I just decided to go on 2000mg for 2 days to get it to stop. I will just try to figure it out one day at a time. I am now 24hrs into taking the vanco. I am still having the swollen belly, loose bm's, etc.
Since relapsing and going on the vanco I have ceased the Sprenkle protocol. Not sure what to do next.
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Woman51960
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Update
I finally had to go back on the vanco around Oct 14th when I was so sick. At that time I started taking vanco 3/250 QID. I started to taper/pulse down about a week ago to 3x a day every other day. I am now into Week 5 where I am suppose to take 3X a day ever other third day. Today makes two days off the vanco and I am suppose to go back on tomorrow for 1 day.
I have also been doing Kevin Trudeau's book, Natural Cures "they" don't want you to know about. It is very interesting and has lots of good information in there. Basically it says America is sick from too many prescription and nonprescription drugs. There are options in there to do different cleanses of the body. It mentions a Candida cleanse after taking antibiotics. I am now going to try this method, and eat 100% all organic foods.
I have also been doing Kevin Trudeau's book, Natural Cures "they" don't want you to know about. It is very interesting and has lots of good information in there. Basically it says America is sick from too many prescription and nonprescription drugs. There are options in there to do different cleanses of the body. It mentions a Candida cleanse after taking antibiotics. I am now going to try this method, and eat 100% all organic foods.
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