Posted by Helpwithcdiff (Savannah Ga) on 08/22/2016
I got C Diff two months ago from my hospitalized Dad who had it several times - then I went on antibiotics for another minor, unrelated issue, which made me vulnerable to it after I had been exposed, and sure enough I got it too.
I was put on a course of Flagyl for five days; it worked but then five days later C Diff came back. Another longer, stronger course of Flagyl was prescribed; 500 mg for 10 days 2X a day; it worked but five days later C Diff it came back. I've since found that Flagyl isn't very effective in general. C Diff has become a superbug - and Flagyl has been used so much it is losing effectiveness.
The third time it came back, I was put on TAPERED or PULSED Vancomycin, which doctor said was normal protocol when Flaygl fails twice. This is not a normal ten day or even twenty day course of Vancomycin, which is better than Flagyl but not as effective as tapering or pulsing it. With Vancomycin "tapered" or "pulsed, " you take it 4X a day for ten days, then 2X a day for 7 days, then 1X a day for a week, then every other day for four weeks. Total of seven weeks. There are variations - sometimes 8 weeks, sometimes weeks of every 3 days included.
The strategy is this: C Diff has found a way of surviving, protecting itself, by planting little spores (its babies) in protective colonies covered in biofilm. The antibiotic can kill the adult C Diffs floating around freely - so you get better. But it can't penetrate and kill the biofilm colonies of babies. So when you go off the antibiotic, you're OK until the biofilm colonies break open, grow up and became adults and guess what? You get full-on C Diff again. The babies are all grown up now, and planting their own babies even.
What tapered Vancomycin does is kill off the adults - then when you slow down your dosages, and the babies start to hatch and grow - but you hit them with dose of antibiotic. So the idea is to get rid of the baby colonies this way (I assume before they plant their own babies?).
I'm only at the end of the once a day week - no diahrrea but I can feel the C Diff pains in my tummy, feel it starting to come back, before I take my morning pill. Soon I will go to every other day - a bit worried.
But the other strategy of tapered/pulsed Vanco is that you have time to replenish your gut with the good bacteria. That is ESSENTIAL - some docs don't recommend that enough. You need a two pronged approach - kill the bad, replenish the good - to really fix the imbalance in your gut allowing C Diff to flourish.
This means dosing yourself with huge amounts of probiotics. I mean a lot. I was taking some - but just a regular amount. I've realized with this tapering that to stop the tummy pains (indicating C Diff returning) I needed to take way more than was recommended, and have found certain dietary changes (through this website and other research and just my own experimenting) that help.
Probiotics - (forgive spelling) S Boolardi is most important, but also Rhamnosus, L. casei, and L. Acidilophous. I have the Jarrow brand Boolardi 5 billion, and the Flora Udo's Choice Hi Potency 8 - 43 billion. These are the refrigerated kinds you get at the health food stores. My mistake was only taking it once or twice a day. NO. You have to super dose it. I am now taking two tablets of the Jarrow Boolardi and two of the Flora Udo's three to four times a day. That's huge but I am trying to replenish my good bacteria.
Kefir - I take Lifeway shots with 20 billion probiotics. Also have the big bottles with 12 billion.
Yogurt - the kind that has probiotics in it. Organic is good. When C Diff is full-on, Kefir and yogurt are the only thing I can drink.
Kumbacha Gingerade - another drink you can get at the health food store - it's great!
Barley water - never heard of that before I read this website. It works. Recipe I found was 1 cup barley (groats or pearled barley) to 6 cups water. Bring to boil, then let simmer for half hour or so. Drain the water off.
Activated Charcoal capsules - also highly recommended here at this website.
Tumeric and Ginger Root capsules - I was putting tumeric in tea but not enough.
Slippery Elm - someone recommended this and I am trying it.
Saurkraut, Kimchi, Miso - these are fermented foods with probiotics. I got these but haven't been very diligent about eating them. Honestly I think the above protocol is sufficient.
Beer - I'm a drinker and like my wine. Before I knew I had C Diff, I noticed that I was way worse after having some wine. C Diff loves sugar, and wine has lots of sugars. But beer is fermented (and if you make it yourself, it probably has probiotics in it) and what does it have in it? Barley! Barley has Chitin in it which breaks open the biofilm colonies. So don't have a wheat beer or rice beer (some of the cheaper beers are made from other grains). Make sure you have a beer made from barley. Malted beers are barley. Craft beers tend to have more barley in them. Check it out.
Avoid sugar, meat (has C Diff - I can eat seafood and sometimes chicken but that's it), raw veggies, nuts, wine, liquor.
But what few people are mentioning on this thread is DIFICID. I am surprised that more doctors aren't aware of or prescribing this. That is supposed to be the next step after failed Flagyl and failed Vanco. Dificid is almost always effective and stops C Diff for good. It is the only thing that cured my dad's C Diff. (He also had Flagyl (failed) and regular (not tapered) Vancomycin.) If, for me, the tapered Vancomycin and diet above does not work, I will go on Dificid. However it's expensive - $4000 for ten day course of it. I don't have insurance but plan on getting some soon. Even with RX coupons, it's still around $3500. But there's a manufacturer's coupon if you have insurance (not Medicare) that will make it affordable. Besides, with C Diff - as we all know - it's worth it. Anything is worth it to recover.
The final almost always effective treatment, besides Dificid, is a fecal matter transplant. This has 93-97% effectiveness rate.
So if you've not gotten rid of your C Diff on Flagyl or Vanco, try tapered Vano with the diet above, and the Dificid, and finally, a fecal matter transplant. The FMT is kinda gross, but again, worth it if you get rid of C Diff.
Good luck my friends!