How I beat CDiff, w/ advice from Johns Hopkins specialist

We spend a lot of time talking about the bad news in this discussion group - here's the spot for the good news. If you've had c-diff and are now well, please tell us about it here.
Bobbie
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Re: How I beat CDiff, w/ advice from Johns Hopkins specialis

Postby Bobbie » Sat Jul 16, 2016 12:35 am

Glad we were helpful. Continued good recovery.

may7911
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Re: How I beat CDiff, w/ advice from Johns Hopkins specialis

Postby may7911 » Tue Nov 08, 2016 8:00 pm

Thank you SO much for sharing this story. It is very supportive. I was hoping to get in touch with this doctor as I feel so helpless and don't know what to do. I've been battling c diff for months and months and need someone to help me. Would you kindly provide his information? Thank you so much

Bobbie
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Re: How I beat CDiff, w/ advice from Johns Hopkins specialis

Postby Bobbie » Tue Nov 22, 2016 10:14 pm

Cara recently sent me an update. Thanks, Cara, for keeping in touch and "giving back."

Unfortunately, I can't post her attachment from my I pad and my laptop has problems. I asked Roy to post the update.

csnider
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Udate from Cara and her success story

Postby csnider » Wed Nov 23, 2016 4:47 am

Managing and CURING Clostridium Difficile (research and learned-techniques from someone who lived with C. Diff for 8 months & got over it!)
Cara Snider Williams (Please contact me if you have questions!)
C. Diff support group online with LOTS of information: http://www.cdiffdiscuss.org
Probiotics: For probiotics, not all are created equal. You want a HIGH number of units of good bacteria (in the billions per day, really, since you're so depleted), and you need pills that have some delivery system (a special coating to get the good bacteria through your stomach acid and where it needs to go--your bowels). The best probiotics are often refrigerated too, to keep the bacteria live; some newer ones don't require this though. But those are 3 things to look for.

• Dosing: Remember that you can't take too much probiotics, so don't worry about taking more than they say to on the package... in fact, you NEED way more units of good bacteria than the average person, since your good bacteria is depleted--which is what let the C Diff take over in the first place. If the package says to take 1 or 2 pills, I'd take more since you need a lot of good bacteria. • Florastor: The only probiotic that's been studied along with C Diff is called Florastor. It's a good yeast (as opposed to a good bacteria, which most probiotics are) and doesn't need refrigeration. Basically your gut has good and bad yeast and good and bad bacteria in your system, and they feed on each other to keep things in check. By taking this good yeast, you're helping keep bad bacteria (the C Diff) in check, in the same way you are with the good bacteria. For the Florastor it says to take 1 or 2 a day, but I was taking 4 when I had C. Diff: 2 in the morning and 2 at night (so 4 x 250 mg=1000 mgs a day). I ordered the Florastor through Amazon, but you can also buy it at CVS or other pharmacies. If you do, go online to Florastor.com to get a free coupon you can print out. Every dollar saves helps! • Other High-Potency Probiotics: Another fantastic probiotic is Ultimate Flora by Renew Life. It’s a 50 billion unit probiotic for people with IBS (irritable bowel syndrome) and is a fantastic quality probiotic, also available on Amazon and at some drug stores or natural stores. Similarly, Digestive Advantage by Schiff, is a probiotic for IBS and has 1 billion units. • VSL #3. This is a refrigerated probiotic specifically formulated for Irritable Bowel Syndrome and people with serious bowel issues. Here's the site: http://www.vsl3.com/ It is kind of expensive, but I get the pills for about $50 with free shipping and you can take anywhere from 2-8 pills a day (it's a 60-count bottle). I really think this has helped me to improve the good bacteria in my system, since it has 250 billion (yes, BILLION) units of good bacteria per 2-pill dose. That's WAY more than most probiotics you can buy and it has many strains of good bacteria too. The pills are shipped refrigerated and you keep them in your fridge. When in the midst of combatting C. Diff, I took 4 a day, but tapered that back to 2 a day once it seemed like I was on the upswing. • Culturelle and Align, other decent probiotics, both of which you can get at pharmacies or grocery stores. • Probiotics for Continuing Care: When I saw Dr. John Bartlett at John's Hopkins (a guy who's a specialist on C Diff since the 1970s), he said that after having CD, your system will have a kind of temporary IBS where you'll have either diarrhea or constipation on and off, since the colon/bowels have gone through so much "trauma." So keep taking probiotics for a while (even years) after getting over CD. I still take probiotics today, 5 years after being cured, because it helps keep my immune system strong. I hardly ever get sick now!


To eat or not to eat: When I had C Diff I didn't want to eat, and I kind of became afraid of food, as weird as that sounds. I didn't know what would make me sick and I didn't want stuff to go right through me so I didn't eat much at all. But the doctors said that eating is good because it keeps stuff moving through your system and that keeps the bacteria moving out. While you're still dealing with the C Diff "loose bowels" it's best to eat food that's easy to digest and that's typically prescribed for diarrhea. The "BRAT" diet is what most doctors recommend for people with loose bowels: it's Bananas, Rice, Applesauce and Toast. I ate a lot of these while I was sick, because they're


easy on your system. Another really good food for you is YOGURT! Eat yogurt! It's got good bacteria in it too, and those live bacteria cultures will help with the diarrhea and bad bacteria. I get plain yogurt (or vanilla) and mix in bananas cut up and it's quite tasty. Plus yogurt helps with digestion anyway. Just look at the package when you buy it to be sure it contains "live yogurt cultures" which it will say somewhere on the container. Most do, but not all. I get the Dannon plain yogurt, or the Greek yogurt with fruit on the bottom. Also, Stonyfield Farms is good, and Yoplait. I eat yogurt every day now, to keep that good bacteria count up.

Another thing like yogurt is called Kefir. It's a "cultured milk" drink that is full of good bacteria. You can find the brand Lifeway Kefir in the organic section at Kroger, right behind the fresh flower section, where the organic milk and organic yogurt is sold. You can buy it in a jug like milk (so it's kind of like a smoothie drink... very very tasty) or in little bottles like "shots" of smoothie drink. They're all very good, and if I don't have yogurt, sometimes I drink the Kefir as a change of pace. They have blueberry, strawberry, blackberry, vanilla, all different flavors. And I think they have 20 billion units of good bacteria in the little shots and all of it has 8 different strains of good bacteria. So definitely worth it.



Medicines for C Diff: I started out with the Flagyl and it didn't work for me—as it doesn’t for most patients dealing with C. Diff. After trying Flagyl for two rounds, they switched me to Vancomycin. I had side effects with the Vanco (ear ringing, crackling), so my John's Hopkins doctor told me to try a reduced dose and see if the side effects returned; they didn't! Instead of taking 4 125-mg capsules a day I took 2 (one pill every 12 hours) and slowly my ear ringing symptoms went away. My C. Diff did come back ONE FINAL time, however, so I had to do a tapering dose, which finally nixed it. Dr. Bartlett at Johns Hopkins told me that he’s C Diff becoming "immune" to Vanco the way it does to Flagyl, so while it may take a few rounds and differing approaches to the dose, it does work! Apparently a lot of current strains of C Diff are Flagyl-resistant, which is probably why I couldn't get over my C Diff (and maybe why it's hanging on for others).

To do a taper dose of Vanco, which is what I eventually did that CURED the C. Diff: • I took 4 125-mg capsules a day for 2 weeks; then went to just 2 125-mg capsules a day for a week; then 1 125-mg capsule a day; then 1 capsule every 2-3 days for a week. • The gradual taper helped the meds still conquer the remaining C Diff in my system without going from a full 4x a day dose to nothing.

Also, if the Vanco is too expensive in oral form (without a prescription plan it can be $600 or more for a round of it), you can call around to pharmacies to find one that will make an oral dose out of the IV liquid Vanco. It's much much cheaper, and it will be an unpleasant tasting liquid, but is more affordable, so worth it.

If Vanco isn't an option for you, though, you could ask your docs about taking Rifaximin (pronounced Riff-ax-a-meen), and the name brand for that is Xifaxin (pronounced Zy-fax-in). In between my Flagyl and Vanco, I was on this for a round, and it worked for a while. I was C Diff free for 3 months, until I had to go on an antibiotic for another issue, which caused the C Diff to return. But apparently Rifaximin is being studied as a new drug against C Diff.



Antibiotics for future illnesses that are dangerous, somewhat safe, and safe: This is really important info because even when you're "over" C Diff you're still at risk of having it come back. Taking antibiotics is the quickest way to spur a recurrence, but Dr. Bartlett at Johns Hopkins gave me a list of what "classes" of antibiotics are safe, not so safe, and outright dangerous. Apparently (I didn't know this before) antibiotics are broken up into "classes" for the different types. Check out this chart that shows the different kinds and the meds associated with them: http://en.wikipedia.org/wiki/List_of_antibiotics. Dr Bartlett's paper work outlined the following recommendations for me, going forward, as far as what classes of antibiotics had probability of causing a C Diff recurrence:



→ Low probability or no chance: Sulfonadmides, Mandelamine, Fosfomycin, Furadantin→ Low probability: Sufla-trimethoprim, narrow spectrum beta lactam (such as penicillin, cefazolin), Macrolides (although recent data suggests these may no longer be safe), Tetracycline, Aminoglycosides

→ More risky, but relatively safe: Broad-spectrum beta lactams other than third-generation Cephalosporins, Carbapenems

→ High risk antibiotics to avoid: Clindamycin, Amoxicillin, Third-generation Cephalosporins (ceftriaxone and cefotaxime)

I have this list with me in my wallet, so that when I'm at the doctor's and they need to prescribe me an antibiotic, I pull out the list and they can see what I can have and what I can't. They will know which antibiotics are part of what class, so don't worry about that. If you say you can't have "Cephalosporins" they know that includes the drug Cipro, and so on. I'd suggest keeping this list with you, too, so that next winter some doctor doesn't give you Amoxicillin for a strep throat or something. That would almost certainly resurrect your C Diff :(




Lactose Intolerance: In some cases, the Johns Hopkins doc said people with C Diff are temporarily lactose intolerant. Basically, our bodies have a harder time breaking down the lactose (sugar) in dairy because our enzymes are out of wack. Usually a normal person has lactase to break down the lactose, but ours is depleted. So I take Lactaid (little pills you can buy at a pharmacy or even Walmart) when I eat ice cream or dairy products like soft cheeses--mozzarella, feta, blue cheese. When cheese are aged, though, the lactose evaporates, so hard cheese like parmesan and sharp cheddar shouldn't be a problem for you. I also have been using soy milk or lactose-free milk. One exception is yogurt, which is dairy but contains lactase enzymes to break down the lactose, so again, eat lots of yogurt!

I hope this info helps you. I know it's a lot, but I've found that I feel better physically and emotionally when I know what's going on and what to do. I've also ended up "teaching" this info to my doctors over the years, because they don't know much about C Diff, sadly. If you keep having problems with your C Diff you could consider calling Dr. John Bartlett at Johns Hopkins, who is super helpful and his receptionist is very knowledgeable as well. He even gave me his phone number to call with any new symptoms, recurrences or questions about meds (he's where I got some of the info in this write-up). He's been studying C. Diff since the late 1970s, and is regarded as the top specialist on C. Diff and other infectious diseases

Bobbie
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Re: How I beat CDiff, w/ advice from Johns Hopkins specialis

Postby Bobbie » Fri Nov 25, 2016 11:13 pm

MODERATORS' NOTE:

Cara Snider recently contacted me with an update. Roy posted it. See next post.

Serthe
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Re: How I beat CDiff, w/ advice from Johns Hopkins specialist

Postby Serthe » Mon Dec 19, 2016 3:52 am

You are very lucky you find out a good doctor for your son cdiff . otherwise there are many parents who did`nt find any help for there children.

izzysmom
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Re: How I beat CDiff, w/ advice from Johns Hopkins specialist

Postby izzysmom » Sat Sep 21, 2019 12:28 pm

Just adding on to this thread to say that, approx. 3 years ago I was diagnosed with C. difficile. My doctor first prescribed anti-diarrhea meds, saying that they would help (even though I insisted that something was wrong, that diarrhea was extremely rare with me...and no tests to try and find out the cause). Then, after I decided to skip my GP and go straight to the hospital (one week later, and almost 20 lbs. lighter) I wound up going through many months of treatments. The first treatment was Flagyl (10 days? I think) which did nothing. Oh, it stopped the diarrhea, but the moment the Flagyl ended, diarrhea-headache-vomitting returned full force. Second treatment was again Flagyl, only this time for 30 days. Same results. It was like putting a bandaid on a leak in a water dam. The third treatment - a long, tapered dose of Vancomycin - *finally* did the job, just as Drs were going to hospitalize me. All told, I went through this for about 5 months, from beginning of diagnosis to end of final treatment.

I wanted to add this because there really is hope on overcoming this horrible affliction. Recently I had to go to an emergency dentist because I had (well, still have...waiting for a root canal in October) an abscessed tooth, and initially she wanted to prescribe Clindamycin* as a treatment. (We all know about this antibiotic's reputation with C. diff!) After explaining my health issues to her though, she decided to opt for a 7-day treatment of amoxicillin. I was really scared to take it (despite the safe(r) record of recurrence with C. diff and this med), but had no viable other choice. Now it's about 10 days post-antibiotics and I'm fine. No recurrence, inflammation is gone in my tooth, and - other than normal, recurring digestive issues that I've had my entire life - the C. diff hasn't returned.

This is such an awful disease to experience, not only from the symptoms - which can be debilitating, and can severely limit a person's ability to function and participate in society - but the stigma surrounding it is also difficult. I remember at one point returning to the ER because it had once again flared up, and the attending doctor wouldn't go anywhere near me...she held a mask over her face, refused to set foot in the room I was in, and literally shouted to me from the other side of the hallway. (The nurses, thankfully, were FAR less fearful, and treated me like a human.) My heart goes out to anyone who goes through the battle of C. diff...but please know that it can be beaten. It truly can.

*Ironically, my experience with C. diff did not originate with antibiotics from a dentist. It seems that for me, my doctor had prescribed long-term proton-pump inhibitors (treatment for acid reflux) and after being on this for about 4-5 months, that's when I was struck down with C. diff. And (ironically again) I work in a field where we publish scientific manuscripts, and at one point, a few months after my own battle. a manuscript had crossed my desk over the risk of C. diff development. The focus of the paper was the hidden vulnerabilities of this disease, and mentioned that researchers have only recently realized that, along with heavy doses of antibiotics (esp. those such as Clindamycin), proton pump inhibitors are also causing an increase in C. diff cases.


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