Meds plus natural way

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.
nan577
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Joined: Sat Mar 29, 2014 12:42 am

Meds plus natural way

Postby nan577 » Sat Mar 29, 2014 1:42 am

I don't want to say that I'm fully recovered, but I'd say 2-3 trips to the bathroom a day opposed to 10-15+ sounds like success.

I'm a 21 yr old female and tested positive for cdiff after 7-8 months of symptoms. I assumed the stress of college was just causing ibs, but as things got progressively worse I realized I needed to see a GI specialist. When the test came back positive I was prescribed flagyl for 2 weeks and was told that everything would go back to normal. The flagyl made things much worse during the 2 week course, and afterwards I had less D and more gurgling noises. I still had D immediately after eating and the sensation of having to "go" all the time was still there. I then saw an infectious disease doc who prescribed a 2 week course of vanco with the option of an fmt if the vanco didn't work. He suggested a taper course, but I hadn't done my research and all I thought was why would I spend 6 weeks as opposed to 2 putting chemicals in my body? Knowing how the taper works now, I would have gone with the taper. I guess the spores close up or hide during the antibiotic course and come back out when they aren't threatened, but by tapering you gradually decrease the meds or skip days allowing the spores to come back out and then suprise attack them with another dose. IDK sounds more effective to make sure they're really gone. Anyways, after the 2 weeks of vanco I was definitely feeling better but still had D and the rear sensation. I knew that c diff puts the gut through hell and was going to take time to heal, but I wanted to make sure I was on the right track and decided to see a naturopath. Luckily my parents are super supportive and paid for me to go because my naturopath is not covered by insurance (idk if any of them are in my state) and $150 for an hr of their time is A LOT but well worth it. I was put on a special diet and was given supplements. So what has worked to improve my symptoms so far:

Vanco (the liquid kind) 14 days, 4 times a day

Saccromyces boulardii twice a day, with lunch and dinner

Probiotics once in the am

Fish oil with vitamin A & E (a & e for energy I think)

And I am on a diet that consists of NO sugar, dairy, or wheat. I think cdiff/bad bacteria feeds on these things so eliminating these foods means eliminating food for the bad stuff .

My diet consists of a lot of rye bread, almond milk, oatmeal (to feed good bacteria), pistachios, skinless chicken, fruit and some veggies like carrots with hummus. The only sweetener I am allowed is stevia which I put in my green tea which is supposed to detoxify. I've done a lot of reading up on other people's methods, I was wondering if anyone has had success of clearing up post infectious ibs with grapefruit seed extract, oil of oregano, HCl, or the clay stuff? Or is that just to get rid of the cdiff? Either way I'm interested if it has worked for you so please let me know. Apparently this stuff has a chance of coming back and I'd like to be fully prepared if it does. I will be taking these supplements for the next year, maybe even for the rest of my life. This has been a really hard year and my heart goes out to anyone who has ever faced this nasty thing. I thought that once my symptoms improved my mind would be at peace, but I still have trouble leaving my house in fear of the "what ifs". Physically I am getting better but this stuff really does take a toll psychologically. I am a completely different person than I was a year ago. I can only hope to keep going up from here, and if my experience helps another person then I'm glad something good has come out of it xoxo

seekingcure
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Posts: 1907
Joined: Mon Mar 25, 2013 1:28 am

Re: Meds plus natural way

Postby seekingcure » Sat Mar 29, 2014 2:30 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, 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 80%) 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.)

Welcome to the site. We appreciate your sharing your experience with us. I am glad to hear that you have found the naturopath to be helpful to you and have been able to figure out foods that agree with you as well as supplements that seem to be helpful. How long have you been off the Vanco?

I actually tried the oil of oregano and grapefruit seed extract before I resorted to antibiotics, as my symptoms had improved some after the initial terrible week that I had just after finishing a course of Clindamycin cream. I really couldn't tell that it did anything to help me; if anything it increased my D. I have had IBS for many years prior to c-diff and continue to have it post c-diff. For the first three months or so after finishing Vanco, the IBS was worse than before, but now, four months out from Vanco, I seem to be doing better most of the time. I still have my episodes, though, although they have not been as painful as they used to be.

The thing that I feel has helped me the most with my IBS is probiotics. I take a number of them: VSL-3, s. boulardii, Renew Life Vaginal Support and Primadophilus Optima Women's. Some people on site report that they cannot tolerate probiotics and they actually make their symptoms worse, so it's a very individual thing to find if they help you and which particular ones help.

You mentioned that you take a probiotic in the morning. Did the naturopath recommend it and which one do you use?

I'm also curious as to whether or not you feel an antibiotic contributed to your contracting c-diff? If so, please complete an adverse event report. There is a link to it under General C-diff Discussion.

As you have unfortunately learned the hard way, c-diff is a very anxiety producing illness. Many of us develop some degree of germaphobia after c-diff and we will never again take an antibiotic without thinking twice.

Wishing you continued improvement and a return to normal. Bea
Bea

nan577
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Joined: Sat Mar 29, 2014 12:42 am

Re: Meds plus natural way

Postby nan577 » Sat Mar 29, 2014 11:44 pm

Hi Bea,

thank you for your feedback. I have taken many courses of antibiotics over the years for acne, mrsa (twice), and UTIs. However I can't say which ones they are for I do not remember, but the most recent were during my bout with cdiff without knowing I had it at the time for a UTI maybe this past september I think. I have been off the vanco since late february. The probiotics were suggested by my naturopath, both made by Klaire Labs and are refrigerated along with the nano-epa fish oil supplement that is not made by klaire labs. The probiotics are called vital-10 and consist of the lactobacillus acidophillis and bifidobacterium lactis (excuse my spelling) as main bacteria with other strains less potent in the capsule, and the capsules are lactose free or something like that. I bought them at my dr's office for about 60 for both. I forgot to add to my list of regular foods... I eat sushi at least once a week. I know it's against my diet but it's a tiny amount of fried stuff, but I get the shrimp tempura and california rolls with miso soup. Out of everything I eat, this is the easiest meal to digest. I almost feel normal after eating it and I think the miso and tofu are supposed to have probiotics in them from what I've read.

You said that you were a few months off vanco, are you back on your feet and stuff again? I certainly hope so. Also, for your ibs post cidff what diet do you normally follow? I'm glad that the symptoms have calmed down for you. I did not have ibs before this, and I'm hoping this diet will ease it down until I'm back to normal again. Sometimes I want to have a glass of wine... but I'm scared to!

AllisS
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Joined: Fri Sep 07, 2012 10:52 pm

Re: Meds plus natural way

Postby AllisS » Sun Mar 30, 2014 1:12 am

Sorry for the ordeal you've been through; the anxiety is familiar to most of us on the site.

I do not think the diet that you describe or any of the supplements are going to have an effect on whether c. difficile does or does not recur ... which, hopefully, it will not. I highly doubt that c. difficile is fueled by sugar, dairy, or wheat; there are no data indicating this, at least not that I've come across in the year and a half that I've been reading up on this illness.

As for whether the diet or supplements might help IBS, I don't see how you would know, as you're taking so many different things that any cause-effect association will be impossible to make.

Since you're able to tolerate a variety of foods, you might try a small amount of wine, as you mention you'd like to do; if no ill effects, probably no reason to abstain, and it could help with relaxation.

Best wishes for your continuing recovery,

Allison
If your illness was preceded by use of a medication, e.g., an antibiotic, please fill out an FDA Adverse Event Report at http://www.fda.gov/Safety/MedWatch/default.htm

seekingcure
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Posts: 1907
Joined: Mon Mar 25, 2013 1:28 am

Re: Meds plus natural way

Postby seekingcure » Sun Mar 30, 2014 1:59 am

Thank you for responding. You haven't been off the Vanco very long at all so I think some continued symptoms are pretty much to be expected. You've had a major infection and it is going to take some time to heal.

As for me, I am much older than you and have numerous other health issues, but I would say that I am pretty much back to normal for me. Like I said, I had IBS before, so the episodes of that are really nothing new. I am eating a normal diet, with the exception of limiting dairy. If I do eat dairy, I take a Lactaid prior to it and this seems to help lessen any symptoms. Dairy was the one thing my GI told me to limit during and immediately after c-diff because apparently a lot of people with c-diff have trouble tolerating it. I have never limited wheat has it as never seemed to bother me, but a lot of people do have sensitivity to gluten. I also limit sugar intake, both because I am a diabetic, but also because it tends to aggravate my IBS. I also use only stevia because it is a natural sweetener and I think it's better than artificial sweeteners.

The jury is still out on whether or not probiotics will prevent a recurrence of c-diff but I tend to think if you tolerate them well, why not give it a try? I, personally, think there is a good chance that they can. There was a study done with kefir taken along with antibiotics for c-diff and it seemed to indicate that kefir can lessen the incidence of relapse. As you probably know, kefir is a cultured drink with beneficial bacteria. I can say that probiotics definitely help me with my IBS symptoms. I can tell a huge difference if I try to leave them off.

As far as diet, try adding new things one at a time so, if you have a problem, you will know what is causing it. If you want that wine, go ahead and try a little glass and see if it bothers you. Chances are it won't.

I hope things continue to go well for you and you see improvement every day.
Bea

Bobbie
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Re: Meds plus natural way

Postby Bobbie » Sun Mar 30, 2014 1:28 pm

It sounds as though your recovery is going normally. The probiotics might or might not help. Some patients and doctors "swear by them." Other think they are not necessary. They've helped Bea. I found them helpful (VLS3) on two occasions when I had pneumonia and had to take a Z-pak. (I didn't develop C. diff. again.) I didn't find them helpful on other occasions.

C. diff. is an individual disease - more than most others. You'll have to experiment. I'd try a small glass of wine and see if it bothers you. I drank wine in moderation when I had C. diff. and it helped relax me - probably psychological as well as physical.

I worked during most of my first two cases of C. diff. but I was fortunate Vanco. kept my symptoms in check -until I went off it. Do try to keep as active as possible (sounds as though you are). Exercise is beneficial - it doesn't cure C. diff. but it does help you mentally and physically. You are right when you said C. diff. has marred you emotionally - it's done the same thing to almost all of us. Try to avoid antibiotics in the future. You mentioned you had a UTI. 80% are caused by E. coli, and Macrobid (considered a "safe" antibiotic) usually works for it. Some, however, can't tolerate it. I am on a preventative dose of Macrobid for chronic UTI's. I believe Bea is, too. See CDI - UTI's and CDI - Antibiotics.

You are young and sound otherwise healthy so hopefully you will continue to do better. Best wishes for your recovery, and keep us posted.

PS I think I'd avoid the sushi for awhile as it's usually raw - thus "chancy."


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