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Ugh! C. Diff. What can I do? *Update*


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#1 Miss Peregrine

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Posted 20 March 2017 - 09:08 PM

My mom has been sick for a couple of weeks. I was at her house and touching the same things she was. She just called from the ER and she has C. Diff. :( Obviously I am terrified for her but also, is there anything I can do to lessen the chances of me and my son getting it?


Edited by Miss Peregrine, 12 April 2017 - 11:54 AM.


#2 texasmom33

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Posted 20 March 2017 - 09:15 PM

Y'all should be fine if you have a normal functioning immune system and aren't on antibiotics. It's not going to be a fun recovery for your Mom though. I hope she does okay. 

 

ETA- other than washing your hands there isn't much you can do on your end even if you had known when you went over. If you're really concerned you can take probiotics, but most people who contract C Diff have something else going on- bowel disease, weakened immune system, etc. I really wouldn't worry too much about it. It's not something your average healthy person gets without another factor going on. 


Edited by texasmom33, 20 March 2017 - 09:18 PM.

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#3 Catwoman

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Posted 20 March 2017 - 09:21 PM

I'm so sorry to hear about your mom! :(

Can you speak with her doctor and ask if there is anything you can do to be proactive to help ensure that you and your son don't get sick? Even if the chance is small that you will catch it, I would take every possible precaution.
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#4 zoobie

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Posted 20 March 2017 - 09:24 PM

Probiotics with specific strains: https://www.ncbi.nlm...10/#!po=7.47126
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#5 ifIonlyhadabrain

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Posted 20 March 2017 - 09:24 PM

https://www.amazon.c...e/dp/B0013OVW0E

The above probiotic has been the only thing that has worked for some people to get rid of c-diff. Always take probiotics with antibiotics, anyway.
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#6 FaithManor

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Posted 20 March 2017 - 09:27 PM

Echoing above. But if you do have someone in the house who has been recently sick with funny/bowel trouble, has an autoimmune disorder, cancer, or took antibiotics then you need to bleach surfaces, bathrooms, etc. and be very careful around them since you could be a carrier. cDiff is evil and can live on clothing, hard surfaces, door knobs, you name it for long periods of time.

We just had that scare two months ago. My DNA donor who is a cancer patient contracted it, and my Dh had just visited him the night before the diagnosis. Dh has a mildly compromised intestinal track and bowel due to picking up parasite when on a work trip to South America. We had a hard time convincing US docs of the problem so Dh was sick for four months before receiving treatment so he was at risk. Thankfully, he did not get it.

Edited by FaithManor, 20 March 2017 - 09:27 PM.

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#7 Miss Peregrine

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Posted 20 March 2017 - 09:27 PM

https://www.amazon.c...e/dp/B0013OVW0E

The above probiotic has been the only thing that has worked for some people to get rid of c-diff. Always take probiotics with antibiotics, anyway.

We have Florastor from my son's Lyme abx. It has that, too. Thanks. 

 

I will pick some up for my mom. 


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#8 Ottakee

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Posted 20 March 2017 - 09:35 PM

Florastor is top notch. We found it much cheaper from Costco...Had to order it but my dd was on it for 6+ months.

As to your mom, if she does not respond completely to the first treatment ask about a fecal transplant. My dd had c diff and failed round after round of antibiotics before the doctor would consider fecal transplant. She had that and within 24 hours was much much better and never had another issue. Highly effective treatment.
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#9 Harriet Vane

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Posted 20 March 2017 - 09:36 PM

I survived a life-threatening bout of C Diff and severe sepsis.

 

Sanitize everything. Not everything will kill C Diff spores. They are very persistent. 

 

S boulardii is a probiotic that specifically targets C Diff. Both you and your mom must take it. 

 

It's also good to do other probiotics--I recommend Align because it is well-researched and verified, and I recommend acidophilus. After I left the hospital, the doctor had me taking one probiotic a day. I asked a few weeks later if I could take more, and they agreed to 10-12 a day. When I started doing that, I felt much, much better.

 

Here is a helpful link:

 

http://www.cdiff-support.co.uk/tips/

 

Here is a summary I wrote for a friend:

 
This is a Mayo Clinic link that offers a lot of information.
 
 
This is a more technical, medical summary with lots more detail:
 
 
 
C diff is easy to determine with a lab test (stool sample). 
 
Medicines to firm up the stools are absolutely ineffective with c diff. 
 
Of the three medications currently available for treatment, metronidazole is the one that is usually tried first and is cheapest. It is also the least effective. With a real case of c diff, this drug should be taken only until the patient can get one of the other two drugs. In my case, metronidazole was unable to kill my infection. It is my opinion, not just from my experience but also from reading medical research, that waiting to see if this drug will work or not is a waste of time.
 
The other consideration with metronidazole is alcohol consumption. It is essential to avoid even the tiniest alcohol consumption while on this drug. Just a small amount will result in lots of pain, vomiting, and other symptoms. 
 
Vancomycin is much, much more effective. The medical literature indicates that this one or fidaxomicin are the drug of choice for severe infections. They are far more expensive. When I was in the hospital, I took massive doses of both vancomycin and metronidazole together. When released from the hospital, the metronidazole alone was ineffective. I switched from that to vancomycin alone in February, and I took vancomycin from February through June. 
 
The vancomycin regimen was pulsed. Initially I took it daily. Over time I was told to take it every other day, then every two days, and so on. In June, I took it once a week. Because this infection is so tenacious, this is what is recommended, though not all doctors are aware of that. The first doctor who prescribed for me did not know this. I ended up switching my care to a university hospital in March, and they felt that a pulsed regimen was superior. The research bears this out as well. 
 
C Diff antibiotics are considered necessary for a long term. Six weeks is the bare minimum, and many need it longer (six months or more).
 
(I was kind of angry about the metronidazole. When I was well enough to start researching what had happened to me, it was clear from the medical literature (research reports, medical testing, etc.) that metronidazole is rarely effective in really killing this infection. It seemed an unnecessary risk to my life and long-term intestinal health to play around with this milder drug.)
 
The risk of taking vancomycin that long is red man syndrome. This is most commonly understood to be an immediate reaction similar to an allergic reaction. However, it can also happen to people who take this drug over a long period of time. I did not suffer this, but I know someone who did.
 
Fidaxomicin is considered the most effective. It is likely what I will try if I have another infection. It is not as commonly used because it is terrifically expensive. 
 
The other two issues that are a concern with c diff are yeast/fungal infection due to the powerful antibiotics and the effects of this illness on the heart. Consider taking fluconazole or other antifungals as well as potassium for heart issues.
 
 
The other treatment for severe c diff is a fecal microbiota transplant (FMT). Here in the US, it is done in two instances: if the patient's life is in danger, or if the patient suffers at least three separate recurrances of c diff infection. This procedure is considered experimental, but so far it is shown to be extremely effective. Studies show greater than 90% efficacy.
 
The concerns for this procedure are much the same as with most transplants, but also specifically a concern about the effect on other health concerns. The research at present is focused on determining the risk of "catching" other health conditions from the donor such as cancer or diabetes. This risk is not quantified at present and largely unknown.
 
 
 
While the infection rages, diet is a consideration. When I was in the hospital, I decided to not eat until my symptoms improved. Eating invariably meant pain and nausea and more distressing symptoms. However, that is the worst choice for this infection, and I am thankful for the kind nurse who explained this to me. It is essential to continue eating, even if only broth and jello, so that the intestinal system will continue working. Had I refused nourishment, the risk of the intestinal system dying would have been significantly higher. When I was at my sickest in the ICU, my diet consisted of beef or chicken broth and jello. I progressed from there to bananas, applesauce, and pureed hot cereals. In the early months, I found myself craving Chinese egg drop soup also. My husband and daughter were wonderful--it is a simple soup to make (broth, green onion, and egg with a little soy sauce), and they made endless bowls of it for me. I also craved French onion soup, which is similar but without the egg. 
 
When I was home after hospitalization, coping with the infection while taking medicines, my diet for a long time was pureed or softened food. There are some foods that help with recovery. They are homemade meat broth (specifically made with the bones), gelatin, and fermented foods such as yoghurt, sauerkraut, kefir, or pickles. Sour dough bread or sprouted grain bread is also recommended. For the long term, they recommend continuing with these foods and also embracing a Mediterranean diet. The reason for these foods is because of the probiotic and prebiotic content. I recently read that oatmeal and oat bran are helpful as well.
 
They also recommend kombucha. However, this is a stimulant, both because it is often fermented in caffeinated tea, and also because of a byproduct produced in the fermentation that is a powerful stimulant. Some experience elevated heart rate or palpitations as well as terrible anxiety.
 
Many who contract c diff also suffer deep, chronic, debilitating depression afterward. I am thankful to say I avoided this. However, the theory is that the destruction of gut microbes is the reason for the severe depression. It is something to be aware of.
 
It is also common for c diff sufferers to later also be diagnosed with various gastrointestinal disorders such as Crohn's, celiac disease, irritable bowel syndrome, and others. 
 
Another consideration is the importance of probiotics. (Above) 
 
Even more importantly, lab tests have shown that the probiotic saccharomyces boulardii is particularly effective with c diff. The university hospital recommended it to me, as did another doctor I consulted. Many c diff sufferers take this routinely for years following infection. It is usually recommended to take s boulardii separately from other probiotics, at a different time of day.
 
 
 
 
 

 

http://www.cdiff-support.co.uk/tips/


Edited by Harriet Vane, 20 March 2017 - 09:41 PM.

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#10 texasmom33

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Posted 20 March 2017 - 09:37 PM

We have Florastor from my son's Lyme abx. It has that, too. Thanks. 

 

I will pick some up for my mom. 

 

Florastor is perfect. I keep bottles around the house at all times. My GI says it's the best probiotic out there.

 

 I had C Diff after baby #3 c-section (on and off again colitis for decades, so vulnerable to all of the antibiotics) so have gotten to experience all of the fun. I hope your Mom responds well to the meds. 


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#11 Katy

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Posted 20 March 2017 - 09:42 PM

Kefir isn't rated as the best probiotic, but it is cheap, widely available, and has repeatedly been shown to colonize the digestive tract.   Give some to your mom.  Drink some yourself.  Give some to your son.  When I'm exposed to anything like that, I drink at least a bottle a day.  You have to look at the calories and replace something snack or meal wise (a bottle has 560 calories).  It's in the yogurt section of every major grocery store or health food store.  Aldi carries it for $1 cheaper than other grocery stores.

 

Avoid contact if one of you has to go on an antibiotic too.

 

If all else fails for your mom, look into fecal transplants.


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#12 Twigs

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Posted 20 March 2017 - 09:51 PM

When I had C diff, I took 1 round of antibiotics but the C diff came back.

 

I then used Florajen 3, it took a few months to get rid of the C diff symptoms, but it worked. This is what I take now whenever I take antibiotics.


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#13 Miss Peregrine

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Posted 20 March 2017 - 09:52 PM

I survived a life-threatening bout of C Diff and severe sepsis.

 

Sanitize everything. Not everything will kill C Diff spores. They are very persistent. 

 

S boulardii is a probiotic that specifically targets C Diff. Both you and your mom must take it. 

 

It's also good to do other probiotics--I recommend Align because it is well-researched and verified, and I recommend acidophilus. After I left the hospital, the doctor had me taking one probiotic a day. I asked a few weeks later if I could take more, and they agreed to 10-12 a day. When I started doing that, I felt much, much better.

 

Here is a helpful link:

 

http://www.cdiff-support.co.uk/tips/

 

Here is a summary I wrote for a friend:

 
This is a Mayo Clinic link that offers a lot of information.
 
 
This is a more technical, medical summary with lots more detail:
 
 
 
C diff is easy to determine with a lab test (stool sample). 
 
Medicines to firm up the stools are absolutely ineffective with c diff. 
 
Of the three medications currently available for treatment, metronidazole is the one that is usually tried first and is cheapest. It is also the least effective. With a real case of c diff, this drug should be taken only until the patient can get one of the other two drugs. In my case, metronidazole was unable to kill my infection. It is my opinion, not just from my experience but also from reading medical research, that waiting to see if this drug will work or not is a waste of time.
 
The other consideration with metronidazole is alcohol consumption. It is essential to avoid even the tiniest alcohol consumption while on this drug. Just a small amount will result in lots of pain, vomiting, and other symptoms. 
 
Vancomycin is much, much more effective. The medical literature indicates that this one or fidaxomicin are the drug of choice for severe infections. They are far more expensive. When I was in the hospital, I took massive doses of both vancomycin and metronidazole together. When released from the hospital, the metronidazole alone was ineffective. I switched from that to vancomycin alone in February, and I took vancomycin from February through June. 
 
The vancomycin regimen was pulsed. Initially I took it daily. Over time I was told to take it every other day, then every two days, and so on. In June, I took it once a week. Because this infection is so tenacious, this is what is recommended, though not all doctors are aware of that. The first doctor who prescribed for me did not know this. I ended up switching my care to a university hospital in March, and they felt that a pulsed regimen was superior. The research bears this out as well. 
 
C Diff antibiotics are considered necessary for a long term. Six weeks is the bare minimum, and many need it longer (six months or more).
 
(I was kind of angry about the metronidazole. When I was well enough to start researching what had happened to me, it was clear from the medical literature (research reports, medical testing, etc.) that metronidazole is rarely effective in really killing this infection. It seemed an unnecessary risk to my life and long-term intestinal health to play around with this milder drug.)
 
The risk of taking vancomycin that long is red man syndrome. This is most commonly understood to be an immediate reaction similar to an allergic reaction. However, it can also happen to people who take this drug over a long period of time. I did not suffer this, but I know someone who did.
 
Fidaxomicin is considered the most effective. It is likely what I will try if I have another infection. It is not as commonly used because it is terrifically expensive. 
 
The other two issues that are a concern with c diff are yeast/fungal infection due to the powerful antibiotics and the effects of this illness on the heart. Consider taking fluconazole or other antifungals as well as potassium for heart issues.
 
 
The other treatment for severe c diff is a fecal microbiota transplant (FMT). Here in the US, it is done in two instances: if the patient's life is in danger, or if the patient suffers at least three separate recurrances of c diff infection. This procedure is considered experimental, but so far it is shown to be extremely effective. Studies show greater than 90% efficacy.
 
The concerns for this procedure are much the same as with most transplants, but also specifically a concern about the effect on other health concerns. The research at present is focused on determining the risk of "catching" other health conditions from the donor such as cancer or diabetes. This risk is not quantified at present and largely unknown.
 
 
 
While the infection rages, diet is a consideration. When I was in the hospital, I decided to not eat until my symptoms improved. Eating invariably meant pain and nausea and more distressing symptoms. However, that is the worst choice for this infection, and I am thankful for the kind nurse who explained this to me. It is essential to continue eating, even if only broth and jello, so that the intestinal system will continue working. Had I refused nourishment, the risk of the intestinal system dying would have been significantly higher. When I was at my sickest in the ICU, my diet consisted of beef or chicken broth and jello. I progressed from there to bananas, applesauce, and pureed hot cereals. In the early months, I found myself craving Chinese egg drop soup also. My husband and daughter were wonderful--it is a simple soup to make (broth, green onion, and egg with a little soy sauce), and they made endless bowls of it for me. I also craved French onion soup, which is similar but without the egg. 
 
When I was home after hospitalization, coping with the infection while taking medicines, my diet for a long time was pureed or softened food. There are some foods that help with recovery. They are homemade meat broth (specifically made with the bones), gelatin, and fermented foods such as yoghurt, sauerkraut, kefir, or pickles. Sour dough bread or sprouted grain bread is also recommended. For the long term, they recommend continuing with these foods and also embracing a Mediterranean diet. The reason for these foods is because of the probiotic and prebiotic content. I recently read that oatmeal and oat bran are helpful as well.
 
They also recommend kombucha. However, this is a stimulant, both because it is often fermented in caffeinated tea, and also because of a byproduct produced in the fermentation that is a powerful stimulant. Some experience elevated heart rate or palpitations as well as terrible anxiety.
 
Many who contract c diff also suffer deep, chronic, debilitating depression afterward. I am thankful to say I avoided this. However, the theory is that the destruction of gut microbes is the reason for the severe depression. It is something to be aware of.
 
It is also common for c diff sufferers to later also be diagnosed with various gastrointestinal disorders such as Crohn's, celiac disease, irritable bowel syndrome, and others. 
 
Another consideration is the importance of probiotics. (Above) 
 
Even more importantly, lab tests have shown that the probiotic saccharomyces boulardii is particularly effective with c diff. The university hospital recommended it to me, as did another doctor I consulted. Many c diff sufferers take this routinely for years following infection. It is usually recommended to take s boulardii separately from other probiotics, at a different time of day.
 
 
 
 
 

 

http://www.cdiff-support.co.uk/tips/

Thank you so much. I'm sorry you had to go through all that. I am definitely going to share the info with her and hope she will take the probiotics.



#14 transientChris

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Posted 21 March 2017 - 12:41 AM

I had C. Diff twice and yes, I have other problems like chronic autoimmune issues and am on strong immunosuppressants.  The first time I got it was after being on two different antibiotics after a sinus infection and then another infection (maybe bronchitis, don't remember ).  I was not so severely ill but was told to get S. Boulardii and take lots of it.  It did resolve it.  Then the second time was after I was hospitalized with an antibiotic resistant cellulitis and given some very strong antibiotics.  That one also cleared up well with S. Boulardii.  I now take S. Boulardii whenever I have an antibiotic. No more issues.


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#15 StephanieZ

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Posted 21 March 2017 - 05:25 PM

I'd put everyone on S. Boulardii for a month or so. There's lots of good data on it. Harmless. Easy. 

 

I use NOW brand from Amazon, but I'm sure there are other good brands. (We take one capsule twice a day, FWIW.) 

 

HIGHLY recommended. I'd put your mom on it, too, for SURE. For at least a few months. 

 

Since learning about it, I make sure anyone in my family takes S. Boulardii as soon as prescribed an antibiotic, and then for at LEAST two weeks after completing the prescription. IMHO, anyone with GI issues, or who has taken many antibiotics in their past, can benefit from it for longer, or for life. Great probiotic. 


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#16 DesertBlossom

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Posted 21 March 2017 - 06:14 PM

Can I hijack this thread and ask a question? Can symptoms of c. diff come and go? My 74yo dad has been having problems off and on making it to the bathroom. (Number 2) He's been on a number of antibiotics over the last couple years for recurring foot infections thanks to type 2 diabetes. I stumbled across this thread and started wondering. I picked up a really good probiotic for him a while back just because I know it's good to take, but it doesn't have the specific strain mentioned in this thread. My dad's symptoms apparently come and go, but this has been over the last few weeks. I am wondering if I should insist he gets checked for this.

Edited by DesertBlossom, 21 March 2017 - 06:15 PM.

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#17 Harriet Vane

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Posted 21 March 2017 - 07:20 PM

Can I hijack this thread and ask a question? Can symptoms of c. diff come and go? My 74yo dad has been having problems off and on making it to the bathroom. (Number 2) He's been on a number of antibiotics over the last couple years for recurring foot infections thanks to type 2 diabetes. I stumbled across this thread and started wondering. I picked up a really good probiotic for him a while back just because I know it's good to take, but it doesn't have the specific strain mentioned in this thread. My dad's symptoms apparently come and go, but this has been over the last few weeks. I am wondering if I should insist he gets checked for this.

 

I am not a doctor, nor do I play one on TV.

 

If he has struggled with any form of chronic diarrhea, he should get tested. 


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#18 DesertBlossom

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Posted 21 March 2017 - 07:23 PM

I am not a doctor, nor do I play one on TV.

If he has struggled with any form of chronic diarrhea, he should get tested.


What kind of test is it? Stool sample? I wonder if his doctor would call in an order for it. He mentioned it at his last dr appointment (but made me leave the room because he was embarrassed by thr topic) and I don't think the dr was all that concerned. At least my dad didn't sya they were going to do anything about it.
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#19 Spryte

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Posted 21 March 2017 - 07:33 PM

I'm so sorry for your Mom.

 

Harriet Vane said everything better than I could, and more than I'd have thought to say.  I had recurring C. Diff for years and it was a huge fight to get rid of it.  I still fear a relapse, and should it occur - I will be looking into a fecal transplant asap.  I know, yuck, but effective.  

 

Definitely take Florastor.  All S. Boulardii is good, but the studies were conducted with Florastor brand, and I always go for that one now.  Any time I suspect a relapse sneaking up on me, I take Florastor, garlic and oil of oregano - not all at the same time, space the others away from the Florastor. I up the usual probiotics as well.  And watch the diet.  None of those measures will address a raging infection, but I have had some limited luck in preventing a suspected relapse with those measures (but who knows, maybe it wasn't a relapse coming on at all, and I just got lucky?).  

 

How's your son's gut health?  Didn't he have Lyme treatment?  I would definitely be loading him up with probiotics and S. Boulardii at this point, and doing everything possible to protect his gut flora - I feel like Lyme patients, with their histories of prolonged abx, are particularly vulnerable.  That is how I came to know C. Diff, anyway.  

 

Hope your Mom beats this quickly, and that no one else get sick.


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#20 Miss Peregrine

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Posted 21 March 2017 - 10:30 PM

I'm so sorry for your Mom.

 

Harriet Vane said everything better than I could, and more than I'd have thought to say.  I had recurring C. Diff for years and it was a huge fight to get rid of it.  I still fear a relapse, and should it occur - I will be looking into a fecal transplant asap.  I know, yuck, but effective.  

 

Definitely take Florastor.  All S. Boulardii is good, but the studies were conducted with Florastor brand, and I always go for that one now.  Any time I suspect a relapse sneaking up on me, I take Florastor, garlic and oil of oregano - not all at the same time, space the others away from the Florastor. I up the usual probiotics as well.  And watch the diet.  None of those measures will address a raging infection, but I have had some limited luck in preventing a suspected relapse with those measures (but who knows, maybe it wasn't a relapse coming on at all, and I just got lucky?).  

 

How's your son's gut health?  Didn't he have Lyme treatment?  I would definitely be loading him up with probiotics and S. Boulardii at this point, and doing everything possible to protect his gut flora - I feel like Lyme patients, with their histories of prolonged abx, are particularly vulnerable.  That is how I came to know C. Diff, anyway.  

 

Hope your Mom beats this quickly, and that no one else get sick.

He was on Abx for a month. He and I are both taking the Florastor. I might add another probiotic I had him on from the Lyme treatment(kids powder from Costco).

 

My mom said she is feeling better. She is on Flagyl IV and an oral abx. She couldn't remember the name. She won't take the probiotic while in the hospital because they haven't prescribed it. I am going to visit her tomorrow and bring some Florastor. She said she has been taking a probiotic but I am sure it is a drugstore cheapy.

 

I'm sorry you, too, have had to deal with it. i hope you remain relapse free.


Edited by Miss Peregrine, 21 March 2017 - 10:32 PM.

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#21 Harriet Vane

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Posted 21 March 2017 - 10:47 PM

He was on Abx for a month. He and I are both taking the Florastor. I might add another probiotic I had him on from the Lyme treatment(kids powder from Costco).

 

My mom said she is feeling better. She is on Flagyl IV and an oral abx. She couldn't remember the name. She won't take the probiotic while in the hospital because they haven't prescribed it. I am going to visit her tomorrow and bring some Florastor. She said she has been taking a probiotic but I am sure it is a drugstore cheapy.

 

I'm sorry you, too, have had to deal with it. i hope you remain relapse free.

 

Flagyl is metronidazole. Yeah, the one that usually does not work. Don't take my word for it--the medical literature bears this out. It is cheaper, so most doctors will go several rounds with this. Your mother may be one of the lucky ones who is able to be cured using this drug, or she may suffer recurring C Diff for months or years before taking vancomycin or fidaxomycin anyway. If she was sick enough to be hospitalized, then I would question the wisdom of relying on metronidazole to try to kick this.

 

Vancomycin pills are terribly expensive, as are fidaxomycin. However, you can get vancomycin in liquid form from a compounding pharmacy for significantly less. I took the pills for months. When I switched my care from a regional hospital to a university hospital, a kind doctor hooked me up with a compounding pharmacy. 

 

It is well worth pushing the doctors to a more effective medicine. The risks with recurring C Diff includes major abdominal surgery to re-section the bowels, permanent ostomy bags, or death. There is also the risk of the fecal micobiota transplant--effective, but with significant questions and still considered experimental. I am not trying to be overly dramatic or scare you unnecessarily--it is the reality I had to face, and I would like to help you.

 

Regarding Florastor--this was recommended to me specifically by two "normal" doctors, one of whom is the head of a large hospital system in a major city. There are scientific studies. Perhaps your mother's doctors could tell her to take the probiotic so she doesn't think it's some weird thing? 

 

Holding your mom in my prayers.

 

Edited to add: It's possible she may be taking metronidazole in partnership with one of the other drugs. If so, then that would be appropriate. The objection to metronidazole is relying on it alone.


Edited by Harriet Vane, 21 March 2017 - 10:53 PM.

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#22 Harriet Vane

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Posted 21 March 2017 - 10:50 PM

What kind of test is it? Stool sample? I wonder if his doctor would call in an order for it. He mentioned it at his last dr appointment (but made me leave the room because he was embarrassed by thr topic) and I don't think the dr was all that concerned. At least my dad didn't sya they were going to do anything about it.

 

It's a stool sample. 

 

Some hospitals have a policy that they will only test stools that are loose, not firm or formed. Some hospitals will test whatever the doctor tells them to test. 

 

It's a simple test and results are available pretty quickly, so it's worth at least ruling out. 



#23 Miss Peregrine

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Posted 22 March 2017 - 12:01 AM

Flagyl is metronidazole. Yeah, the one that usually does not work. Don't take my word for it--the medical literature bears this out. It is cheaper, so most doctors will go several rounds with this. Your mother may be one of the lucky ones who is able to be cured using this drug, or she may suffer recurring C Diff for months or years before taking vancomycin or fidaxomycin anyway. If she was sick enough to be hospitalized, then I would question the wisdom of relying on metronidazole to try to kick this.

 

Vancomycin pills are terribly expensive, as are fidaxomycin. However, you can get vancomycin in liquid form from a compounding pharmacy for significantly less. I took the pills for months. When I switched my care from a regional hospital to a university hospital, a kind doctor hooked me up with a compounding pharmacy. 

 

It is well worth pushing the doctors to a more effective medicine. The risks with recurring C Diff includes major abdominal surgery to re-section the bowels, permanent ostomy bags, or death. There is also the risk of the fecal micobiota transplant--effective, but with significant questions and still considered experimental. I am not trying to be overly dramatic or scare you unnecessarily--it is the reality I had to face, and I would like to help you.

 

Regarding Florastor--this was recommended to me specifically by two "normal" doctors, one of whom is the head of a large hospital system in a major city. There are scientific studies. Perhaps your mother's doctors could tell her to take the probiotic so she doesn't think it's some weird thing? 

 

Holding your mom in my prayers.

 

Edited to add: It's possible she may be taking metronidazole in partnership with one of the other drugs. If so, then that would be appropriate. The objection to metronidazole is relying on it alone.

re: metronidazole I know. *sigh* I am going to find out tomorrow what the other one is. Hopefully I can talk to someone about the probiotics but I have yet to encounter a doctor who appreciated patients/family who know things. :(

 

 

I appreciate your experience. Thank you!


Edited by Miss Peregrine, 22 March 2017 - 12:03 AM.


#24 Miss Peregrine

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Posted 22 March 2017 - 12:13 AM

I am sitting here getting more angry about the Flagyl. I told her about how it doesn't work very well for C. Diff. and to find out what they were going to give her and look it up first. Hopefully I can do some advocating for her tomorrow. 



#25 kand

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Posted 22 March 2017 - 01:56 AM

What part of the country are you in? There is a c diff forum that has recommendations for doctors depending where you are. The right dr can make a huge difference in how quickly someone gets the treatment they need to actually recover from this. Other doctors wait until patients have relapsed over and over and over again before moving to something more effective.

Definitely have her start the Florastor, and at high dosage. Six a day (divided in three doses) would be very reasonable.
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#26 CadenceSophia

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Posted 22 March 2017 - 03:22 AM

Flagyl did work for my DH for c diff so I wouldn't freak out if this is the first round. My grandmother went like 6 rounds and eventually had two fecal transplants, the second one took and saved her life. The second only took because we got her off dairy. C. Diff can cause lactose intolerance and people with c. Diff should stay off it until they are definitely in the clear for relapse. DH and I decided that if the flagyl didn't work, we'd go right to the fecal transplant and not mess around with the side effects of stronger abx.

DH did tons of probiotics in addition to the flagyl plus the jarrow formula linked above for several months. Iirc, the s. Boullardi eats the toxins A and B that c. Diff puts off so it isn't as valuable if you don't have it. I was pretty scared my kids would get it so I loaded them up on probiotic food.They ate a $10 jar of Bubbies pickles every day for two weeks and I made raw sauerkraut mandatory at the dinner table for a month :)
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#27 StaceyinLA

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Posted 22 March 2017 - 07:59 AM

I can't really offer much help, but I wanted to say I'm sorry, and I'll be praying for your mom. My mom had a terrible bout of c-diff in the months before she died last year. We were around her a LOT, even some of her great-grandchildren, and none of us had any issues. We just washed our hands a bit more often, and let the nurses help her to the bathroom.

Edited by StaceyinLA, 22 March 2017 - 08:00 AM.

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#28 Miss Peregrine

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Posted 22 March 2017 - 10:12 PM

Ok, she is on Vancomycin in addition to the Flagyl so that makes me feel better. She looked normal, too, and was "herself."

The hospital food looked and smelled disgusting but she needs to eat so hopefully she will. I brought her a box of Florastor I picked up from Target ($1 a pill!) and I will have more shipped to her house from Costco.
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#29 Spryte

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Posted 22 March 2017 - 10:25 PM

Glad she's on vanco. IV? Or oral?

It may not be the same for her, but I needed something like six mos of vanco, tapering off very slowly, to beat C Diff.

I had to do that twice, but no relapses in years now. Whew.

Hoping she gets better and better.

(And shuddering, just remembering. And that distinctive smell, oh my...)
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#30 sbgrace

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Posted 22 March 2017 - 10:31 PM

My son has chronic c . diff that we control with specific probiotics. He contracted it while hospitalized almost 10 years ago now.

 

When anyone in my family who has contact with my son takes antibiotics, we make sure that person also takes Florastor. It's a beneficial yeast that can protect against c.diff and that antibiotics can't kill. We continue that plus Culturelle for a month or so after finishing the antibiotic just for insurance. No one else my family has contracted c. diff, even while on antibiotics, in all those years. My son takes those regularly to control his c. diff, so I always have them in the house. I actually took Florastor to my mom when she was hospitalized after an accident. I wish I had known back when my son was hospitalized to protect him in that way.

 

Really, this stuff is in the community. Anyone on antibiotics should be taking probiotics. I think you're going to be fine. I hope your mom is ok--hopefully they can treat it and get her feeling good.

 

ETA: I just looked at the Jarrow forumula product someone linked above. That contains the beneficial yeast in Florastor plus another something. I may try it with my son! It looks like it might be worth doing for your mom and even you if you're concerned.


Edited by sbgrace, 22 March 2017 - 10:33 PM.

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#31 Harriet Vane

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Posted 23 March 2017 - 06:35 AM

I am so relieved to hear that your mom is on vanco. 

 

Like Spryte, I took meds for six months after my hospitalization. At the time, the first doctor wanted to do only 6 weeks of metronidazole. When I switched to the pulsed regime, another doctor explained that pulsed is better because c diff spores are really good at hiding and self-protection. The pulsing allows the spores to "relax," which makes them vulnerable to the antibiotic. I'm sure there is a more official, scientific explanation out there,

 

I am glad your mom is eating and feeling okay. That's fabulous news! I pray she kicks this without any nightmare recurrences. 


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#32 Miss Peregrine

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Posted 23 March 2017 - 10:25 AM

Glad she's on vanco. IV? Or oral?

It may not be the same for her, but I needed something like six mos of vanco, tapering off very slowly, to beat C Diff.

I had to do that twice, but no relapses in years now. Whew.

Hoping she gets better and better.

(And shuddering, just remembering. And that distinctive smell, oh my...)

IV Flagyl And Oral Vanco.



#33 kand

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Posted 27 March 2017 - 08:05 PM

How's your mom?
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#34 StephanieZ

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Posted 27 March 2017 - 08:09 PM

Can I hijack this thread and ask a question? Can symptoms of c. diff come and go? My 74yo dad has been having problems off and on making it to the bathroom. (Number 2) He's been on a number of antibiotics over the last couple years for recurring foot infections thanks to type 2 diabetes. I stumbled across this thread and started wondering. I picked up a really good probiotic for him a while back just because I know it's good to take, but it doesn't have the specific strain mentioned in this thread. My dad's symptoms apparently come and go, but this has been over the last few weeks. I am wondering if I should insist he gets checked for this.

 

Whether he has c.diff or another thing, I *highly* recommend getting him on very good probiotics AND prebiotics ASAP. Getting the right combination -- I threw the whole medicine cabinet of supplements at him -- was a MIRACLE for my healthy teen son who'd struggled for a year with GI distress after a bad GI illness and then a couple unrelated courses of antibiotics. FINALLY got better. It's not gonna' hurt him and may well make him so much more comfortable.


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#35 Miss Peregrine

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Posted 27 March 2017 - 09:23 PM

How's your mom?


She was released a couple of days ago. She sounds great and is up and around. Thank you for asking.

I asked her how they determine when she is over it and she didn't know? Do they do a stool sample?
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#36 kand

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Posted 27 March 2017 - 10:20 PM

She was released a couple of days ago. She sounds great and is up and around. Thank you for asking.

I asked her how they determine when she is over it and she didn't know? Do they do a stool sample?

That's great to hear. She should be able to tell from her symptoms. If it comes back, she'll know :/. Have her stay really vigilant with the Florastor and other probiotics. It's much too early for her to think it's done and she can stop taking them (not trying to be negative, just truthful). She should stay on them for months at least, though I would wean down to a lower dose after a couple months, but keep them up indefinitely. Costco is definitely the best place to purchase Florastor currently. For some reason, I didn't find the Jarrow S. Boullardii to work well, but that may have been a fluke.
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#37 Miss Peregrine

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Posted 27 March 2017 - 10:27 PM

That's great to hear. She should be able to tell from her symptoms. If it comes back, she'll know :/. Have her stay really vigilant with the Florastor and other probiotics. It's much too early for her to think it's done and she can stop taking them (not trying to be negative, just truthful). She should stay on them for months at least, though I would wean down to a lower dose after a couple months, but keep them up indefinitely. Costco is definitely the best place to purchase Florastor currently. For some reason, I didn't find the Jarrow S. Boullardii to work well, but that may have been a fluke.


I forgot to ask her how long they have her on them. I will do that tomorrow.

#38 Liz CA

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Posted 28 March 2017 - 01:44 AM

I would look if Silver could help with this as well. It kills quite a few bacteria and is supposedly not as harsh as some other chemicals.



#39 Harriet Vane

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Posted 28 March 2017 - 10:23 AM

She was released a couple of days ago. She sounds great and is up and around. Thank you for asking.

I asked her how they determine when she is over it and she didn't know? Do they do a stool sample?

 

So glad she is home and feeling better.

 

Remember, c diff protocols usually involve a looooong course of treatment. She should be taking vanco at least six weeks or more. Please consider the pulsed regimen also.

 

She should definitely take Florastor a minimum of 1-3 months AFTER vanco (so both DURING the vanco and 1-3 months on Florastor alone AFTER vanco).

 

C diff has a really, really high rate of recurrence. It must be followed up on aggressively.


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#40 Miss Peregrine

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Posted 12 April 2017 - 11:54 AM

Well, I was not happy when my mom said the dr. only had her on 10 days of abx after release from the hospital. :/  She got thrush in the middle of that so was put on another abx. after.  She went back yesterday and was C.Diff free. I told her that it has a high recurrence rate so watch out. She is going to remain on Florastor and other pbx forever she said. :)

 

So hopefully a happy ending but I still think her dr is ill-educated.


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#41 Suzanne in ABQ

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Posted 12 April 2017 - 12:38 PM

My 87yo mom went through a bad case of c-diff in 2013, after being hospitalized for another condition.  She finally did a six week course of a compounded antibiotic (don't remember what it was called), but it was a step-down regimen that had to be specially compounded for her weekly.  She went on Florastor then, and has been on it ever since.  She avoids antibiotics if at all possible.  She has needed them once since then, and we increased her probiotic use for the month following, using a "live culture" variety as well as upping the Florastor to 3/day.  After a month, she went back on her maintenance Florastor regimen, 2/day, everyday, forever.


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#42 texasmom33

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Posted 12 April 2017 - 12:48 PM

Well, I was not happy when my mom said the dr. only had her on 10 days of abx after release from the hospital. :/  She got thrush in the middle of that so was put on another abx. after.  She went back yesterday and was C.Diff free. I told her that it has a high recurrence rate so watch out. She is going to remain on Florastor and other pbx forever she said. :)

 

So hopefully a happy ending but I still think her dr is ill-educated.

 

The thrush came most likely from the high doses of antibiotics. It's fungal. So guessing they have her on an anti fungal for the thrush and possibly another for there GI tract. The probiotics should help that too. 

 

I'm glad she's feeling better. 


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