Hello all I am new here. This is my second time with C-Diff. I got it after surgery in 2012 and again in March of this year. I am still positive and have tried Flagyl, Vancomycin and it has not helped. The Doctor now prescribed Dificid as he does not do FMT yet. He also suggested one cup of Kefir with each meal and a low residue diet. I have gained back the weight lost however it seems the C-Diff has gotten worse with all the carbs. I don't know what to do as far as food. I feel like i react to everything. I was gluten free but now have been trying anything to get my energy up. I have gained back the weight but my tummy is not happy. Suggestions???
I am on day 3 of the Difficid and also want to report that I only woke up 3 times last night with D which is way better than the 5 plus times I get up for the past 3 months. I am exhausted! I just ordered Florastor to start and was thinking of VSL-3 although in the past I have had a hard time with Probiotics they really upset my stomach. The brand I tried in the past that I had to discontinue was Metagenics Ultraflora IB. I will go read the probiotics board to see what most people have responded well to.
About FMT- There is not currently a Doctor in my area who does this if needed BUT my GI said he will ask his hospital to start the protocol as it has been long over due. He is good about doing studies, etc. I am hopeful that if needed he can do it. If not there is a Doctor that I have spoken to about 4 hours South of me. Hoping Difficid works....side note I did have good results with their assistance program and got it for 10.00 copay instead of $1300.00 that my insurance wanted me to pay. The Vancomycin cost me 815.00 CRAZY!!!!
I also had parasites..has anyone else dealt with both? Those meds were going to cost $2600.00 yep you read that right and I went to Mexico on vacation and got the same pill name brand and all for $3.00 SIGH...good news is I think the parasites are gone and now just dealing with C-Diff.
Lori
lbspiel
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New here and grateful for this board!(sorry long)
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lbspiel
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Lisa33
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Re: New here and grateful for this board!(sorry long)
STANDARD INTRODUCTION:
Welcome to the site. Read the first forum All Users Read This First and subtopics Site History and Information and Guidelines for Posting to our Discussion Boards. (Note limits on posting.) This will guide you in using the site and answer some of your questions. Read both Dr. Borody's articles. Also see the topics under CDI – particularly ABC Bible, C. diff. Tests and Diagnosis, Antibiotics, Hygiene Tips, and Nutrition.
Doctors lists physicians our posters recommended and contains a list of C. diff. specialists throughout the world with contact information. (Many perform FMT's.) There is a new forum FMT’s and FE’s. Media Reports contains new information on C. diff.
The majority of patients (approximately 70%) recover with one to two rounds of Flagyl, Vancomycin, or Dificid. An unfortunate small percentage doesn’t and can suffer for months. Almost all recover unless there are factors such as advanced age or other severe health problems. New treatments include FMT's, which have a high cure rate. Other drugs and treatments are in the pipeline, and there is increased recognition of C. diff. You can help by educating your family, friends, neighbors, and co-workers. Help us make others aware of C. difficle – which will lead to further advances in treating and/or preventing the infection. If antibiotics contributed to your C. diff, be careful about taking them again. Some people tolerate them; some develop C. diff again. Don’t take medications for C. diff. unless you are tested for the infection first.
The best protection for you and others is thorough hand washing and good hygiene. (See Dr. Borody’s articles and CDI – Hygiene Tips.) For more information, see other support groups on Facebook, including http://www.peggyfoundation.org, the Mayo Clinic and Web MD web sites, and The FMT Foundation.
This is a support site not a medical site. We can’t give you medical advice but can tell you what worked for us and offer support. No one will understand what you are going through except someone who has/had this unpredictable disease. All of our moderators and frequent posters had/have C. diff. (or a loved one with it) and know how physically, emotionally, and financially disabling it can be.
Again, welcome. Remember, the odds are in your favor. (End of letter.)
Hello Lori - Welcome to the site, but so sorry you are dealing with C-diff. Nothing like having parasites and c-diff at the same time. Yikes! I'm just curious if you know how you got it again this year after being free of it for a couple of years. Did you take antibiotics or were in a hospital or healthcare facility? Also, you may want to ask your doctor about doing a pulse/taper method for treatment. I believe there are a couple on this board that did the taper method for Dificid. Did you do a Vanco taper prior? Just wondering if you did, but still relapsed.
Most on this site, including myself take VSL3 and Florastor. Those seem to be the most recommended and used probiotics for c-diff sufferers. Kefir is very good as well. As you said, you can only take what you can tolerate though because you don't want to cause excess symptoms due to probiotics. I took 2 VSL3s per day with active c-diff, along with drinking Kefir and eating yogurts. In recovery now, I take 1-VSL3 and 1-Florastor per day, along with Kefir or yogurt. You need to space out the VSL3s from the meds though because the meds will kill it. Florastor which is S. Boulardii is a yeast probiotic that is not killed by meds. There are many on here who have done FMT's and can share their experiences with you. You can search through posts and will find an abundance of information.
I also have eaten mainly gluten free after c-diff, and I find that eliminating the gluten has helped with digestion and bringing my energy level up. If you can't tolerate many foods, you should just try to stick to a bland diet for now, like the BRAT diet until things calm down. Then you can start to add one food at a time as you can tolerate it. Unfortunately, c-diff is a very individual illness, so what works for one may not work for another. And sometimes it takes longer to recover and get back to a sense of normalcy. Many of us, including myself have suffered from post-infectious IBS and will experience off days, which can seem like a relapse. We use what is called the 3 Day Rule as a gage to differentiate between a c-diff relapse and IBS. You can find this under CDI Info on the Board Index.
For me the fatigue and just the feeling of being unwell and run down lasted a couple of months into recovery. Your body takes a toll from fighting such a serious infection, and yours also fought against parasites. Once you get rid of the c-diff and finish treatment is when the healing really starts. As you are able to eat more and restore vitamins and nutrients, you will start to build back up your immune system and energy level. You should also check for any vitamin deficiencies, as infections can leave you with them.
I will pray that the Dificid does the trick for you and knocks this out once and for all.
Feel better and keep us posted.
Lisa
Welcome to the site. Read the first forum All Users Read This First and subtopics Site History and Information and Guidelines for Posting to our Discussion Boards. (Note limits on posting.) This will guide you in using the site and answer some of your questions. Read both Dr. Borody's articles. Also see the topics under CDI – particularly ABC Bible, C. diff. Tests and Diagnosis, Antibiotics, Hygiene Tips, and Nutrition.
Doctors lists physicians our posters recommended and contains a list of C. diff. specialists throughout the world with contact information. (Many perform FMT's.) There is a new forum FMT’s and FE’s. Media Reports contains new information on C. diff.
The majority of patients (approximately 70%) recover with one to two rounds of Flagyl, Vancomycin, or Dificid. An unfortunate small percentage doesn’t and can suffer for months. Almost all recover unless there are factors such as advanced age or other severe health problems. New treatments include FMT's, which have a high cure rate. Other drugs and treatments are in the pipeline, and there is increased recognition of C. diff. You can help by educating your family, friends, neighbors, and co-workers. Help us make others aware of C. difficle – which will lead to further advances in treating and/or preventing the infection. If antibiotics contributed to your C. diff, be careful about taking them again. Some people tolerate them; some develop C. diff again. Don’t take medications for C. diff. unless you are tested for the infection first.
The best protection for you and others is thorough hand washing and good hygiene. (See Dr. Borody’s articles and CDI – Hygiene Tips.) For more information, see other support groups on Facebook, including http://www.peggyfoundation.org, the Mayo Clinic and Web MD web sites, and The FMT Foundation.
This is a support site not a medical site. We can’t give you medical advice but can tell you what worked for us and offer support. No one will understand what you are going through except someone who has/had this unpredictable disease. All of our moderators and frequent posters had/have C. diff. (or a loved one with it) and know how physically, emotionally, and financially disabling it can be.
Again, welcome. Remember, the odds are in your favor. (End of letter.)
Hello Lori - Welcome to the site, but so sorry you are dealing with C-diff. Nothing like having parasites and c-diff at the same time. Yikes! I'm just curious if you know how you got it again this year after being free of it for a couple of years. Did you take antibiotics or were in a hospital or healthcare facility? Also, you may want to ask your doctor about doing a pulse/taper method for treatment. I believe there are a couple on this board that did the taper method for Dificid. Did you do a Vanco taper prior? Just wondering if you did, but still relapsed.
Most on this site, including myself take VSL3 and Florastor. Those seem to be the most recommended and used probiotics for c-diff sufferers. Kefir is very good as well. As you said, you can only take what you can tolerate though because you don't want to cause excess symptoms due to probiotics. I took 2 VSL3s per day with active c-diff, along with drinking Kefir and eating yogurts. In recovery now, I take 1-VSL3 and 1-Florastor per day, along with Kefir or yogurt. You need to space out the VSL3s from the meds though because the meds will kill it. Florastor which is S. Boulardii is a yeast probiotic that is not killed by meds. There are many on here who have done FMT's and can share their experiences with you. You can search through posts and will find an abundance of information.
I also have eaten mainly gluten free after c-diff, and I find that eliminating the gluten has helped with digestion and bringing my energy level up. If you can't tolerate many foods, you should just try to stick to a bland diet for now, like the BRAT diet until things calm down. Then you can start to add one food at a time as you can tolerate it. Unfortunately, c-diff is a very individual illness, so what works for one may not work for another. And sometimes it takes longer to recover and get back to a sense of normalcy. Many of us, including myself have suffered from post-infectious IBS and will experience off days, which can seem like a relapse. We use what is called the 3 Day Rule as a gage to differentiate between a c-diff relapse and IBS. You can find this under CDI Info on the Board Index.
For me the fatigue and just the feeling of being unwell and run down lasted a couple of months into recovery. Your body takes a toll from fighting such a serious infection, and yours also fought against parasites. Once you get rid of the c-diff and finish treatment is when the healing really starts. As you are able to eat more and restore vitamins and nutrients, you will start to build back up your immune system and energy level. You should also check for any vitamin deficiencies, as infections can leave you with them.
I will pray that the Dificid does the trick for you and knocks this out once and for all.
Feel better and keep us posted.
Lisa
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NanciT
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Re: New here and grateful for this board!(sorry long)
Hi
I am sorry you are dealing with this AND parasites! Hopefully that is gone and now you are working on the CDIFF. I also was in the same situation with 2 GI's I saw who could not even recommend anyone in the area doing FMT's. I went the same route and ended up on Dificid. I was on it a bit longer than most but it did work for me. I finally got in with a GI who would have done the FMT but I was on a taper dose of Dificid at the time and it worked so it was not needed. I also took VSL#3 twice a day, was not able to take FLorister due to rash. My diet was very bland, especially during the time I was on Dificid, I had alot of nausea and stuck to the BRAT diet as Lisa Mentioned above.
I completed the Dificid 8 months ago. I now have the Post IBS which is getting better all the time but my diet is still limited. Some do great and go right back to eating everything, everyone is different. I add food and then see how it goes but my diet is still very bland. I was on medication for 9 months so that may be a reason. I have continued on VSL#3 but take it once a day now.
Dificid has worked for many!! It may take some time to recover once you have completed it so go gentle with the diet . Hoping you feel better very soon!!
Nanci
I am sorry you are dealing with this AND parasites! Hopefully that is gone and now you are working on the CDIFF. I also was in the same situation with 2 GI's I saw who could not even recommend anyone in the area doing FMT's. I went the same route and ended up on Dificid. I was on it a bit longer than most but it did work for me. I finally got in with a GI who would have done the FMT but I was on a taper dose of Dificid at the time and it worked so it was not needed. I also took VSL#3 twice a day, was not able to take FLorister due to rash. My diet was very bland, especially during the time I was on Dificid, I had alot of nausea and stuck to the BRAT diet as Lisa Mentioned above.
I completed the Dificid 8 months ago. I now have the Post IBS which is getting better all the time but my diet is still limited. Some do great and go right back to eating everything, everyone is different. I add food and then see how it goes but my diet is still very bland. I was on medication for 9 months so that may be a reason. I have continued on VSL#3 but take it once a day now.
Dificid has worked for many!! It may take some time to recover once you have completed it so go gentle with the diet . Hoping you feel better very soon!!
Nanci
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sevla
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Re: New here and grateful for this board!(sorry long)
Hi Lori,
I am so sorry you are dealing with all of this. This illness is really so unpredictable and I hope you feel much better soon.
Dificid has helped many people here as Nanci said. So I hope it does it for you too!!
Wishing you good luck and sending positive energy.
I am so sorry you are dealing with all of this. This illness is really so unpredictable and I hope you feel much better soon.
Dificid has helped many people here as Nanci said. So I hope it does it for you too!!
Wishing you good luck and sending positive energy.
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beth22
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Re: New here and grateful for this board!(sorry long)
There have been a couple of posters who also had parasites. I remember one treated with Alinia and the other had to have two different kinds because of the type of parasite. Better have an ova and parasites stool test run to make sure they are gone.
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Misscshell24
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Re: New here and grateful for this board!(sorry long)
Hi Lori, so sorry you are dealing with c diff and a parasite. I too have seen people come down with both on the site. Maybe try a search by putting the name of the parasite you had in the search bar on this site to see others experiences.
I also think it would be a good idea to test to see if the parasites are gone. I don't have personal experience with them, but worked at a vet for 12+ years, where it's very common for pets to have internal parasites and we always recommended that the stool be rechecked a couple weeks after medication stopped to ensure the parasite was gone, as it was not uncommon to need more than one course of treatment. So might be a good idea to discuss this with your doctor.
Hope the dificid does the trick for you and you're feeling better very soon. Good luck and let us know how you're doing.
I also think it would be a good idea to test to see if the parasites are gone. I don't have personal experience with them, but worked at a vet for 12+ years, where it's very common for pets to have internal parasites and we always recommended that the stool be rechecked a couple weeks after medication stopped to ensure the parasite was gone, as it was not uncommon to need more than one course of treatment. So might be a good idea to discuss this with your doctor.
Hope the dificid does the trick for you and you're feeling better very soon. Good luck and let us know how you're doing.
Michelle
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lbspiel
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Re: New here and grateful for this board!(sorry long)
Thanks all. Next week when I am done with the Difficid I will re-test for all and my eosinophils as well. Mine were over 1200 last time. So far the Difficid is not helping and now I have HORRIBLE HEMMIES! I have not slept through the night in months and this low residue diet is not working so I am going back to gluten and dairy free with the exception of my Kefir and Yogurt. Praying for some relief soon. HORRIBLE
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susant
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Re: New here and grateful for this board!(sorry long)
How did you get it again? Do you know?
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lbspiel
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Re: New here and grateful for this board!(sorry long)
The first time was from back surgery. Not sure this second time other than I was in the Bahamas and got parasites too and it started around the same time back in March.
I finish Difficid Thursday and re-test Friday stool study for both parasites and c-diff and then my GI wants me to go on 30 day dose of Vanco 4 times a day at 250mg and then a taper. I was on 20 days of 4 times a day of 125mg and no relief. I am still in the bathroom about 7 times a night and miserable.
I am going to search the posts but wonder if stool study will show negative that soon after all the meds in my system even if I am positive? or maybe if antibiotic resistant it will still show positive.
My GI asked to admit me today to the hospital but I would rather stay home and poop in my own bathroom. I am not dehydrated just tired of wiping and pooping and nothing I eat seems to make a difference.
Lori
I finish Difficid Thursday and re-test Friday stool study for both parasites and c-diff and then my GI wants me to go on 30 day dose of Vanco 4 times a day at 250mg and then a taper. I was on 20 days of 4 times a day of 125mg and no relief. I am still in the bathroom about 7 times a night and miserable.
I am going to search the posts but wonder if stool study will show negative that soon after all the meds in my system even if I am positive? or maybe if antibiotic resistant it will still show positive.
My GI asked to admit me today to the hospital but I would rather stay home and poop in my own bathroom. I am not dehydrated just tired of wiping and pooping and nothing I eat seems to make a difference.
Lori
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NikaNik
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Re: New here and grateful for this board!(sorry long)
So sorry for all you're going through, Ibspiel. You are not alone and have come to a great place for support.
The best time to test is 7-14 days off the c diff antibiotic or results can be false negative or positive (my doc doesn't recommend testing for a cure at all and only tests if someone is having D 3 or more times a day - and even then it can be IBS). Ask for a PCR test (most accurate). Dificid has helped many - particularly the longer tapers/pulses of it which are becoming more known now (I am three months off a taper of it and doing well).
It's rare, though not impossible, for c diff to come back a year later with no antibiotics. Had you been visiting or in a hospital, doctor's office or nursing home? Or are you on any acid reflux medications?
The best time to test is 7-14 days off the c diff antibiotic or results can be false negative or positive (my doc doesn't recommend testing for a cure at all and only tests if someone is having D 3 or more times a day - and even then it can be IBS). Ask for a PCR test (most accurate). Dificid has helped many - particularly the longer tapers/pulses of it which are becoming more known now (I am three months off a taper of it and doing well).
It's rare, though not impossible, for c diff to come back a year later with no antibiotics. Had you been visiting or in a hospital, doctor's office or nursing home? Or are you on any acid reflux medications?
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lbspiel
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Re: New here and grateful for this board!(sorry long)
I had been taking oil of oregano for the parasites is the only thing I can think of. I was on antibiotics for SIBO but it was back in January. I was in hospital for my mammogram in March so possibly that? I am unsure. I have mostly what I would call mushy not D completely although I am having 12-15 mushy BM a day while still on Difficid. I will ask the Doctor about the other test. Prior to the Flagyl and Vanco I was having 12-15 D a day and lost like 10 pounds I have since gained back some but still have fever, abdominal cramps and what I call hot flashes but my hormones were normal. They started with the c-diff treatment of Flagyl and have not gone away yet.
I wonder if I should stop the oil of oregano as I am still taking it 3 times a day per my ND. I am not convinced. I told him maybe that is what killed my good gut bacteria but he said no and wanted me to stay on it. He also had me doing coffee enemas at the time which I stopped both of which I wonder if contributed to the recurrent c-diff. I am scrambling for answers and really just want to know ...
what should I eat and take for healthy gut moving forward....I have received different information from many different Doctors. I also have life threatening airborne allergy to latex and have many cross over food allergies. I have tried FODMAP and I have tried low histamine diet and was gluten free for years until the past few weeks when the Doctor said try low residue diet. I am back to the gluten free because that just made me gain back the weight but all the wheat and sugar made me feel blah. I have not had many fruits or veggies in months. I am hungry but scared to eat it will just go through me. So mostly gluten free pretzels, kefir, protein shakes, yogurt and frozen yogurt. I do not want any meat after the parasites. It scares me and grosses me out. I may have those back too. SIGH!
I have been reading posts for hours and trying to find some answers. :) I appreciate all the replies.
I wonder if I should stop the oil of oregano as I am still taking it 3 times a day per my ND. I am not convinced. I told him maybe that is what killed my good gut bacteria but he said no and wanted me to stay on it. He also had me doing coffee enemas at the time which I stopped both of which I wonder if contributed to the recurrent c-diff. I am scrambling for answers and really just want to know ...
what should I eat and take for healthy gut moving forward....I have received different information from many different Doctors. I also have life threatening airborne allergy to latex and have many cross over food allergies. I have tried FODMAP and I have tried low histamine diet and was gluten free for years until the past few weeks when the Doctor said try low residue diet. I am back to the gluten free because that just made me gain back the weight but all the wheat and sugar made me feel blah. I have not had many fruits or veggies in months. I am hungry but scared to eat it will just go through me. So mostly gluten free pretzels, kefir, protein shakes, yogurt and frozen yogurt. I do not want any meat after the parasites. It scares me and grosses me out. I may have those back too. SIGH!
I have been reading posts for hours and trying to find some answers. :) I appreciate all the replies.
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ResearchGrandma
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Re: New here and grateful for this board!(sorry long)
I have no experience with oil of oregano, but I do know that I became totally dairy intolerant at some point in my C. diff journey. I can no longer tolerate even tiny amounts of yogurt, kefir, or even ensure. I last tested positive for C. diff almost 2.5 years ago and if I have even one spoonful of plain yogurt I will get gas and looser stools. And it is not just the lactose, because I have the same issues with lactose-free yogurt. I know you said you tried different diets and are staying away from meat - what about very well cooked chicken, fish (I like salmon), eggs, tofu, or nut butters for your protein? I had switched to almond milk years before I got C. diff because I preferred the taste. Of course check with your doctor - but maybe a trial of no dairy products (also eliminate any supplements/shakes that list "milk proteins") might help.
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NikaNik
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Re: New here and grateful for this board!(sorry long)
Oh, you poor thing! That's a lot of BMs to have while on treatment. Perhaps the Oil of Oregano is contributing? Would it be worth stopping for a few days to see if symptoms ease up? You can also ask for something called Questran that folks have used to bind their stools and slow the D. I was on a medical food called Enteragam during treatment and am still on it now (it is for IBS-D, boosts the immune system and disables c diff toxins so you might ask about that too. It's expensive but if you get it through Foundation Care (Enteragam's pharmacy) it's much more affordable. It takes a few weeks to kick in but I feel good and I think it really helps.
You mentioned you came down with c diff in March and the antibiotics for SIBO were in January. Unfortunately, one can get c diff for up to two to three months following a course of antibiotics so it's possible that may have had something to do with it. As for diet - my GI suggested avoiding lactose and fructose as c diff can sometimes cause a temporary intolerance to them but every doc and every person is different. I'm sure others will have better suggestions for that. Hang in there!
You mentioned you came down with c diff in March and the antibiotics for SIBO were in January. Unfortunately, one can get c diff for up to two to three months following a course of antibiotics so it's possible that may have had something to do with it. As for diet - my GI suggested avoiding lactose and fructose as c diff can sometimes cause a temporary intolerance to them but every doc and every person is different. I'm sure others will have better suggestions for that. Hang in there!
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lbspiel
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Re: New here and grateful for this board!(sorry long)
I am lactose intolerant but take Enzymedica digestive enzymes and Pepsin HCL with betaine HCL to help digest them. I will try no oil of oregano. As far as meat...I got food poisoning once from chicken and have a total aversion. I love red meat but now after the parasites any meat scares me. I normally don't tolerate eggs well but can try. Dumb food sensitivities and allergies. I bought a rice protein shake that is pretty hypoallergenic to try but it tastes AWFUL. ha. I can't keep nuts or nuts butters in the house because my 9 year old has severe peanut and treenut allergies. I can tolerate almonds but have to sneak it when she is not around. ;)
Has anyone else heard of a vanco after difficid? I will say that I was able to tolerate most all food on vanco which was shocking. Even gluten. Weird but not so much on the Difficid.
Crazy C-Diff
Has anyone else heard of a vanco after difficid? I will say that I was able to tolerate most all food on vanco which was shocking. Even gluten. Weird but not so much on the Difficid.
Crazy C-Diff
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NikaNik
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Re: New here and grateful for this board!(sorry long)
I believe some posters here did Vanco after Dificid with success. Misscshell, I believe is one of them (forgive me if I'm wrong, Misscshell). But the Dificid just might kick it so stay hopeful! Dificid kills less good flora so even a taper or pulse of it might be another option. Agreed - c diff is stupid! Ain't nobody got time for this. ; ) You'll kick it! Just hang in there!
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