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 Apr 18, 2015 3:02 pm

Thanks for checking in. So glad you are doing well.

Anon15
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Re: How I beat CDiff, w/ advice from Johns Hopkins specialis

Postby Anon15 » Sat May 02, 2015 7:57 pm

Csnider. Thank you for all your information. So complete. Do you by any chance have your doctor at Hopkins contact info? I would love to go see him soon. I hope you do! Thank you so much!

Misscshell24
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Re: How I beat CDiff, w/ advice from Johns Hopkins specialis

Postby Misscshell24 » Sat May 02, 2015 8:42 pm

It's been a little while since the original poster posted this. Glad it was helpful for you and welcome to the site. If you don't get a response, try sending her a private message.
Michelle

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

Postby jds0870 » Sat May 16, 2015 2:15 pm

Hello I am new to this site....im curious how long did you do the taper for?

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

Postby seekingcure » Sat May 16, 2015 3:48 pm

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 Dr. Borody's articles. Also see the topics under “CDI” – particularly Recent CDC Report, The C. diff. Bible, Tests, Antibiotics, Hygiene, and Nutrition.

“Doctors” lists physicians our posters recommended and also a list of C. diff. specialists throughout the world with contact information. (Many perform FMT's.) See the new forum “FMT’s and FE’s” or “Media Reports” for new information on C. diff.

The majority of patients (about 70%) recover with one to two rounds of Flagyl or Vancocin. An unfortunate small percentage doesn’t and can suffer for months. Most 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, and Dificid. 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.

If a medication contributed to your case, please fill out an Adverse Event Report online at: http://www.fda.gov/Safety/MedWatch/default.htm. Under "Resources for You," in left-hand column, click on "Report a Serious Medical Product Problem Online." (Allison provided this information.)

The best protection for you and others is thorough hand washing and good hygiene. (See Dr. Borody’s articles and “CDI.”) 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” under “Links” on the homepage.

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.)

I wanted to give you our standard introductory letter and welcome you to the site. The original poster wrote this post a while back and may not see your question and I don't know specifically what taper she used or for how long. See CDI for more information on tapers and pulses that have worked for others on site. If you have questions that you would like to get more responses to, try posting them under "Questions about Clostridium Difficile." Your questions will get more "exposure" there and more answers. You could also try sending a private message to the original poster, but she may not be on site much now and may not get it. Best wishes for a complete and quick recovery for you.
Bea

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

Postby AndysMom » Mon Aug 03, 2015 3:01 pm

Thank you for this terrific information. I was a super healthy and athletic 54 year old until I stepped on a sting ray in Mexico which resulted in cellulitus. I was admitted to the hospital here at home in AZ and was treated by a variety of IV broad spectrum antibiotics since the infectious disease doctor had never seen a sting ray injury before. The hospital failed to tell me of the risk of board spectrum antibiotics and three weeks after my hospital stay, and taking Doxy and Clindamycin, yep, I got CDiff. 10 days of flagyl and better but won't know until my next lab in a few days if its out of my system, although I suspect it's not since I'm not "back to normal". I started tapering the flagyl myself a few days ago. It's a awful drug. If I"m not over it, I'll try your method. I wanted to add that I am eating all the probiotics, yeast, yogurt, and a ton of other things like Kim Chi, Kefir and Nori paper seaweed) and I'm taking/eating Tumeric. I read a Mayo doctor's study that Tumeric kills CDiff. Hospitals are doing a poor job of informing patients on broad spectrum antibiotics about the risks of CDiff. It's beyond disturbing. Had they given me a flyer or notice saying that I needed to be super careful about germs, I would have changed or altered my daily routines like the gym and volunteering at a long term care facility.

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

Postby Bobbie » Tue Aug 11, 2015 12:28 am

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 Dr. Borody's articles. Also see the topics under “CDI” – particularly Recent CDC Report, C. diff. Bible, Tests, Antibiotics, Hygiene, and Nutrition.

“Doctors” lists physicians our posters recommended and also a worldwide list of C. diff. specialists with contact information. (Many perform FMT's.) See the forum “FMT’s and FE’s” or “Media Reports” for new information on C. diff.
The majority of patients (about 70%) recover with one to two rounds of Flagyl, vancomycin, or Dificid. An unfortunate small percentage doesn’t and can suffer for months. Most 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. 20l6 will be a year of many advances and HOPE.

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. Some people tolerate them; some develop C. diff again. Don’t take medications for C. diff. unless you are tested.

For more information, see other support groups including http://www.peggyfoundation.org, Clostridium Difficile Infection (CDI) Support Group, FMT Discussion, Fecal Transplant Foundation, C Diff Foundation, and the UK Support Site. There is also information on some of the better medical sites like Mayo's, Medscape, and WebMD, and the CDC website. Don't use "Dr. Google" to diagnose yourself.

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. The best protection for you and others is thorough hand washing (soap and water are preferable) and good hygiene by you, those around you, and your health care providers.

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 is.

Again, welcome. Remember, the odds are in your favor. (End of letter.)

AndysMom,
So sorry. Who knew walking on the beach could turn into a tragedy? Clindamycin is the first antibiotic implicated with C diff.

C diff has become more resistant so if you don't improve dramatically, see a specialist - preferably a GI or an ID. Flagyl sometimes is not effective anymore and can have nasty side effects. Fortunately, you now have other choices.

Keep exercising. It won't cure you but it will help keep you healthy in other ways and is good for stress.

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

Postby jjglad » Tue Oct 27, 2015 4:23 pm

I was reading thru the "how I beat CDiff w/ advice from John Hopkins specialist...
I was wondering how long you were on the Vancomycin before you started tapering to 2x a day? how long did you take it 2x a day? I would also LOVE to know your regimine each day? When you took the Vancomycin and when you took which probiotics?!

I have been dealing with CDiff for over 2 weeks now. It took 9 days to figure out what the problem was! I was on generic Flagyl at first but then became too ill to continue taking it. GI office switched me to Vanco 4x a day for 10 days. I am on day 6 of taking the Vanco and am finally starting to see improvement in the bowels. Still some bouts of diarrhea, but overall I think bowels are getting better. Needless to say, I have been to the ER twice b/c of this infection! Second time was to get IV fluids b/c I knew full well I was not eating or drinking enough to get better. I have made myself eat the last couple days so I quit feeling so miserable and it has helped some, but just when I think I am finally turning one corner to getting better...one of the original symptoms (diarrhea, or mucus, etc.) creep back in and then the anxiety sets in that I am NOT getting better. I have never had any issues with my gut before so this is all very new for me! Could you please spell out what you did each day to get over the Cdiff? TIA

Misscshell24
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Re: How I beat CDiff, w/ advice from Johns Hopkins specialis

Postby Misscshell24 » Tue Oct 27, 2015 10:59 pm

So sorry you are dealing with this nasty illness. This is an old post, but you could try sending the original poster a private message to see if they respond. Or asking your questions in the C diff forum. There's also a post in the CDI forum titled Pulsing and Tapering that has some helpful taper schedules that you may want to discuss with your doctor. Flagyl is a hard med for many to take. Hopefully, the vanco is easier for you and does the trick. Good luck and let us know how you're doing.
Michelle

care66
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Re: How I beat CDiff, w/ advice from Johns Hopkins specialis

Postby care66 » Sun Nov 22, 2015 11:53 pm

Thank you for your post. I saved it so I can use the information when I see my Dr. especially if or when I need an antibiotic again for something else. I am recently diagnosed with this horrid thing and spent 3 days in the hospital on IV vancomyacin. I am now on oral dose. I wanted to let others know who may read this that I was able to get the vancomyacin at Walmart for 361.00 by using a discount drug card I got on line. Actually, the discharging RN care manager found it for me. My insurance was requiring me to use the flagyl first but since I had such a severe case and it was working so well for me in the hospital, I did not want to try something else. The Dr. said this was better. I am praying this goes away and does not come back. I have started some probiotics as the RN care manager told me about (note the Dr. did not tell me, just said there was a chance it could come back). But I now ordered these that you suggested (I had an off brand of the floristor and had the cuturelle as well as a refigerated multi strand probiotic) and now hoping with these that you suggested, it does not come back. Still have another week on the antibiotic but I do not want it to come back once gone. I have been out of work for 4 weeks now, having first been in the hospital for diverticulitis (from which I got c.dif after course of cipro and flagyl). No one warned me that could happen.

Anyways, thanks so so much for this post. hopefully, this prevents me from having it come back again and I hope the discount drug card for walamrt tip helps someone

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

Postby roy » Tue Nov 24, 2015 6:43 am

Care 66
I hope the part where you say you were on IV vanco is a mistake!
IV vanco will do nothing for c.diff.
Its totaly useless unless its taken in oral form.
If you have to pay for vanco ask about the IV form being reconstituted into a liquid for oral use.
2 weeks worth should be around $100.

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

Postby staycee » Wed Dec 02, 2015 12:01 pm

Thank you so much for the info!! I just found this site. Your info is the best I have found after weeks of googling! Long story short, I battled c diff years ago after 3 weeks of clindamyacin from a tooth abcess. After a month I realized instant brown rice seemed to "move it out" for good..along with probitics.

I just had gastric sleeve surgery and dummy me failed to continue my probiotics and be vigalant about the antibiotics they gave me..and had a reoccurance. The night the belly cramps hit I started eating brown rice though it wasn't something I was supposed to eat yet..I was blessed it didn't hurt my sleeve and that I caught it early and I am offf the flagyl and on double culturelle and yogurt and a brat diet even though its not a bariatric approved diet I prefer to get this crud out of me. I haven't suffered a lot this time around so far other than having to recover from surgery at the same time and the nasty side effects of flagyl on my still healing stomach.

I have a question. My poor gut has been through it and in an effort to get andkeep things moving because I can only eat very small amounts of food, I have started taking miralax. Arent laxatives supposed to be bad? I am better but kind of waiting for the other shoe to drop because I know how this thing is? Anybody else dealing with this?

care66
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Re: How I beat CDiff, w/ advice from Johns Hopkins specialis

Postby care66 » Tue Dec 22, 2015 4:39 pm

The part about the IV antibiotic was a mistake...they actually had me on some other type of IV antibiotic and oral vancomyacin because they weren't sure what it was at first and I was only a few weeks out of the hospital from diverticulitis which started this whole mess.

Update is that I took the vancomyacin as scheduled, was no 125 mg 3 or 4 x day. I was better and off of them for a month. Last Thursday I had a follow up colonoscopy (due to the diverticulitis issue earlier and to make sure nothing else was going on in there) and the dr. did a culture of some stool she still found in there, thinking it looked and smelled (i know that's gross but so real)like cdif still. Well yesterday I got a call and, yes I have it again. I was ill Sunday and yesterday, so not totally surprised but I thought it was food poisoning (and it may have been) as my husband got sick at the same time. He is better now, but I am not. Staring vancomyacin again today only this time higher dose of 250 mg 4 x day for 14 days. And we'll see. I have been taking high doses of all the probiotics listed in this original post plus drinking kefir, kombucha tea, and eating organic yogurt with live active cultures so I was disappointed I till got it back.

If this does not take care of it, I will definitely ask about the tapered dosing. I have missed so much work now and am out of sick and vacation days. Hoping to feel better/not be contagious anymore by Christmas day. I am just tired of being ill and feeling anxious at every twinge in my stomach.

Reading about other people getting well, keeps me hopeful.

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

Postby delyla » Wed Mar 16, 2016 4:09 am

Thank you so much for posting this! I am also in WV and feel like im surrounded by people who are not up to date on this knowledge. I have to explain what kefir is to doctors here, im getting frustrated. I think the infection is gone but im left with a lingering burning sensation in my intestines which is scary to me.
Im going to up my probiotic intake...they definitely seem to help.
Cold medication..guaffesin...seemed to irritate me. Sucks diring cold time.

Thank you for posting this!

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

Postby ronvalen » Fri Jul 15, 2016 11:07 pm

I recently was hospitalized with C diff colitis after being on Cipro for diverticulitis.

I appreciate your article and all the information about which antibiotics to take and avoid. I have been feeling better physically, but mentally, this is taking a toll on me. I find I am living in fear of getting sick and needing an antibiotic. I don't want this to define who I am and don't want to live waiting for it to happen again.

It has been 6 weeks since I have been in the hospital. I have only regained 3 of the 14 pounds I lost. I feel good, am eating, but find my stomach still rumbles and aches a bit after eating. One of the responses talked about how it takes time for the stomach to heal after the trauma of Cdiff. Also, thanks for the lactaid advice!!!!

I was very frustrated with the post sickness medical advice which was almost non existent.

This blog has been very helpful and I feel that I have some good information to move forward.


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