Learn to love Sauerkraut...

[AllisS]

Thanks for the continuing support, Kathy G, and for your helpful comment, beth22. I reread my two posts that angered and upset at least a few people last night and honestly thought the shorter one was pretty innocuous. The second, longer one was probably phrased more provocatively than necessary. beth22, I agree with your observation that tact can become a casualty under adverse circumstances such as illness. Yet walking on eggshells isn't desirable either. Communicating about sensitive topics is always a balancing act, and I will strive to do this more skillfully in future.

[Chrisums]

AllisS,

I can understand your caution in jumping on the probiotic bandwagon, but I feel that your view is not so much unwarranted, but rather skewed. Your reaction to my post leads me to believe that you view probiotics in a similar light as such alternative medical techniques as Colloidal Silver and the like, where there is little to no scientific evidence supporting their use, but rather only based on previous user's personal testimonials. Believe me when I say, as a pragmatist, I am not in the habit of doing such things either. I believe whole heartedly in not wasting my time, or endangering my health, with things that have no proven value beyond the tales of others (not to say I believe they are lying... rather I believe many people attribute their healing to one thing when in fact it was something else. Like someone taking Colloidal Silver alongside antibiotics, and then touting the CS as the cause for their cure and ignoring the fact that the antibiotics were probably the real cause).

That said, I won't have you take my word for it. At the bottom of this post are links to tests and studies performed by both medical doctors and scientists, along with their results. Each of these indicate that, while probiotics may not be a miracle cure, they do more than simply "not hurt". Even a 5% shift in the relapse rate is amazing when you think on large scales. There are 500,000 people infected every year. 20% of those people relapse. That's 100,000 people. What if probiotics dropped that down to 15%? That may not sound like much, but it's a difference of 25,000 people! That's HUGE.

Probiotics make sense, if you think about it. WHY do we relapse? Well, one of 3 reasons. A) The original infection was never killed. Many doctors believe that this is the cause for most people's first relapse (they prefer to call it a reinfection). In this case, a second treatment with a better drug would help. A fecal transplant or the vaccine would just be overkill. B) The body is incapable of creating the antibodies to fight off the C Diff. In which case, they will always have the C Diff in their gut and each time they get on antibiotics, the loss of bacteria to starve the C diff out allow the C diff to grow greatly. In this case the antibiotics would be only temporary relief (alone), a fecal transplant would only mask the issue until the next antibiotics, but the vaccine would help. C) The body is incapable of creating a sufficient amount of gut flora to replace what was lost, meaning that each time the spores germinate they will quickly overrun the colon and the infection will start all over. In this case, the antibiotics would only be a temporary reprieve, the vaccine probably won't make much difference since the primary underlying problem of too little bacteria still exists, and a fecal transplant would be the way to go.

So... here we have 3 groups of people. A are the 80%. They take their meds, poof they are better and the issue is no more. B and C are the relapsers. Since it's hard to tell what group you are in... so what can you do? Now, even if probiotic strands are transient, they still serve their purpose. For the day or week they remain in your body, they act as normal stomach bacteria would and safely overcrowd the C Diff, reducing and/or eliminating symptoms. For the people in group C, this could make all the difference in the world. Does it mean they have to take probiotics forever? Probably, since they will never naturally reproduce the lost bacteria. But it's not the end of the world, having to do that. I mean, $60-100 a month + 5 minutes of my time every day to pop pills is a small price to pay to get one's life back, IMO. At least until another option becomes available. Even for people in group A (which I truly hope I'm in... I'm keeping that hope alive until the day I relapse for the second time!), probiotics could serve as a buffer to keep the C Diff in check until your body's own bacteria can build up to baseline once more (if it ever will... some studies suggest they will be altered permanently).

All in all - I don't like the idea of sitting and waiting, doing nothing to change my fate and leaving it up to luck, my body or whatever else. Yes, a vaccine is on the way... but it's still not even out of phase II yet! Phase III, even with the new rush category the FDA placed on the vaccine, can take years to complete. We will not see it in 2013, that's for sure. So that leaves us with 2 options- sit back and see what our bodies will do, or go down kicking and screaming. I vote for the latter. For the next month my diet will be extremely strict, limited to the best prebiotics I can think to add to my food. Spinach, oatmeal, honey, sauerkraut, bananas, whole wheat bread, and anything else of use. I will take my probiotics- S Boulardii, a nutritionist friend's recommended probiotic brand, and even a probiotic vitamin! I'll limit my intake of the 2 C Diff prebiotics, sugar and white flour (just like spinach and oatmeal are food for the good bacteria, sugar and white flour are food for C Diff, helping it grow quickly, healthy and strong). With all of that, we'll see what happens. Maybe it's all futile and I'll relapse tomorrow, despite all this effort that I'm putting into it... but I have to at least try. This way I'll know, without a doubt, that if I relapse I couldn't have done anything differently. But in all honesty, these links below do give me hope that what I am doing is not only not futile, but could very well work exactly as intended.

And with that said, the evidence does back up the anecdotal tales we hear from others who have beaten this beast without even using antibiotics...

Anyhow, here are the links. Enjoy!

Saccharomyces boulardii - http://www.ncbi.nlm.nih.gov/pmc/article ... 645225.pdf
Kefir - http://www.minnesotamedicine.com/PastIs ... y2009.aspx
Lactobacillus Plantarum - http://www.ncbi.nlm.nih.gov/pubmed/18840110
Probiotics in General - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3105609/
Probiotics in General - http://www.ncbi.nlm.nih.gov/pubmed/16635227
Prebiotics - http://www.springerlink.com/content/y717605v48434682/

[Kathy George]

Chrisums,
Again, everyone has their own opinion. I still firmly believe that one should now overload with self medication, especially without doctors' advice. Isn't that what got most of us into this hell to begin with??? End of discussion!!!!
Kathy

[Chrisums]

Kathy George wrote:
> Chrisums,
> Again, everyone has their own opinion. I still firmly believe that one
> should now overload with self medication, especially without doctors'
> advice. Isn't that what got most of us into this hell to begin with???
> End of discussion!!!!
> Kathy

Actually, most folks seems to be in this boat because we took doctor prescribed medication and failed to take the probiotics the first time around, since (unlike in Europe) we aren't actively warned ahead of time to do so.

So... discussion continue!!!

[beth22]

You might want to check out colostrum as well. I took it post c diff without side effects and it seemed to help. If you google it, you will also find studies that it helped patients with c diff to relapse less. My ID was the one who suggested that.

[Chrisums]

Beth,

I'll keep an eye out while looking for more articles/studies for that! Sounds like you have a good ID. Someone who is not only willing to try new things, but makes sure to stay educated on whats going on with this disease. Sounds like a keeper! =D

When I was getting my referral, I specifically chose my current GI because he's a researcher. Most GIs and family doctors go with what they already know, or what new standards are moving around... few bother to stay on top of the newest information. Even less than that actively sit around keeping up with the most current studies and trials. I ran across my current GI while flipping through all this information. I kept running into his name and then suddenly found out "Hey, he lives in my city now!". I can't tell you how happy I was.

Medicine is an actively evolving and growing field. What worked last year could already be outdated this year. What was considered worthless 2 weeks ago may suddenly be known as the best possible solution. So finding a doctor who actually cares enough to stay on top of all of that? Priceless.

In the meantime, its up to us to keep up as well! Our generations are unique- we have at our fingertips not only all the accumulated knowledge of the past 6,000+ years, but instant access to the most recent and cutting edge information. And as someone on this forum said many times - "Be your own advocate". It's up to us to keep up with what the medical community is learning and bring it up to our doctors, or to find doctors who keep up with it themselves. Suffering needlessly while putting our faith in a doctor who, while they mean well and may have all the knowledge the 1990s had to offer, simply isn't willing to keep up or try the newest things just doesn't appeal to me.

If I'm gonna get sick, I'm gonna do it kicking and screaming the whole way. I got C Diff because I didn't do my homework, and because I believed the doctor when his reply to my question "Is taking antibiotics for this long a bad thing?" was "Nah, plenty of people take them for years and are fine". My sin was ignorance, and my penance is this C Diff. I won't make that mistake twice.

[AllisS]

Chrisums,

Thanks for the URLs; I will look at all (and have already skimmed a couple; very technical, the one about the rat experiment). Your tenacity in researching this topic is impressive. I understand the rationale for probiotics in combatting C. diff, though the point that you make about not being able to know what to attribute recovery to, if recovery occurs and more than one supplementary agent has been used, seems well taken. I've used Culturelle and Align, pre-C. diff, for preexisting GI problems, and didn't find them helpful, so I stopped taking. But with the C. diff, I took Floraster for a week or two, until I started noting that it seemed to be causing additional GI symptoms. (Perhaps this is more likely in people who have IBS pre-C. diff.) So while I am willing to believe that probiotics may be useful, their side-effects are significant enough that I doubt I'll be able to benefit from them.

AllisS

[JoElizabeth]

I haven't read this entire discussion but I just wanted to add my own experience as far as probiotics. Like many I relapsed once after vanco and then was put on Dificid during a second several week vanco taper which was failing to control my symptoms. I suppose I'll never know which drug controlled my c.diff although I am assuming it was the Dificid for obvious reasons. I am nearly 11 months c.diff free. I am, however, never complacent, knowing the unpredictability of this illness!

During c.diff, I was not able to tolerate any probiotics at all...they seemed to make my symptoms more intense. Both my ID doc and GI suggested that I forego probiotics, especially Florastor during active c.diff, stating that the only surefire way to repopulate the colon is to eat a variety of foods and that Florastor paves the way for systemic yeast infection especially with a c.diff damaged colon. I'm kind of the opinion that less is best during active c.diff although I know I am in the minority on this. I doubt that probiotic use can hurt during active c.diff although they just weren't tolerable for me at the time.

When my c.diff was controlled with Dificid, I started taking VSL3 every day along with either yogurt or a cup of kefir. Have these things helped keep my from relapsing for 11 months? I'm not certain but I'm not about to stop them now as I believe that my now-populated colon has probably kept me from relapse. Like many here, I fell to c.diff by not taking probiotics while I was on antibiotics. So, in the future, I will load up on them when the need for antibiotics arises.

We are all different...no one way seems better or worse from what I've seen.


jo

[KAB]

I developed C Diff after emergency gall bladder surgery for an infected gall bladder, where I had been given heavy doses of antibiotics. I was told I could have it again from time to time. Is that like an experience any of you had or did you have C Diff for other reasons?

[NanciT]

Hello KAB and Welcome to the site Please read the first thread for all new posters


Your post is at the bottom of an old thread but I did see your question. There are several posters who have had surgery, been given antibiotics and come down with CDIFF. If you read through some of the questions, I am sure you will find some.

The reason they told you it can return, if you were to go on any antibiotic you will be at risk. You don't mention how you were treated or how long you had it. If you were treated in the hospital and it is gone, that is wonderful.

Many of us stay on Probiotics, I have continued on them and I am 3 years Post CDIFF. Florester is one of the main ones people take, or VSL#3 which is the one I take.

I hope you have recovered from both the surgery and CDIFF.

NanciT

[Bobbie]

KAB,
My episodes were linked to antibiotics. I can tolerate several antibiotics - a zpak is one. Everyone is different however.

See CDI - Antibiotics. The broad spectrum ones are usually the biggest offenders.