My story, 2nd round, many Q’s, scared

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Believe
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My story, 2nd round, many Q’s, scared

Postby Believe » Sun May 13, 2018 4:38 pm

Hi! I am so glad for the presence of this kind and resourceful site. I’m striving for as calm, productive and reasonable a daily routine as I can muster amidst this health crisis. But I’m scared. I’ve been working hard to think positive and overcome my fears, walk tall and strong. Be a rock for my family. It’s exhausting, this anxiety. Anybody relate? I’m sure it’s a common experience we share here.

I was diagnosed with C.diff in late March. I’m an energetic 54 and mom of a sweet 11-yr-old boy I’m crazy about. I want to live a long and healthy life for him. I feel blessed to have a strong and supportive husband. I love, love, love my little family. We love to do plain stuff like grab a few nights of downtime per week from our busy lives to just laze in the living room and binge-watch funny shows like Modern Family and chuckle our butts off. Laughing is the best stress buster! But I’ve become pretty serious and scared, mostly.

I want to believe I can be healthy and energetic for my boys again! I want to believe and sustain faith that life can and shall return to normal, that a cure is possible. It may take the unlucky 30% longer, but eventually, we really do all recover? After the first 10-day round of Flagyl failed, I tested positive a month after the last dose. I’ve now begun Vanco. Guessing this means I must have relapsing or recurrent C.diff. I’m trying to keep the faith, but my PCP refused to prescribe a taper or pulse with the Vanco, and she said not to take probiotics until I’m done. (She previously did have me take probiotics with the Flagyl.) Does it sound like I should go to a specialist, or is her approach typical and I should give it a chance?

My case seems ‘mild’. I had it for 7 weeks before becoming seriously suspicious and calling my doc, who promptly tested me. I’ve always been regular, rarely experienced D. For sure, I picked up this bug in one of two places: either while spending long hours at the nursing home, comforting my stepdad as he was passing away in late January, or a few weeks later while volunteering to serve at a Senior Valentine’s luncheon at our Town hall.

Nobody else in my family seemed to pick it up from the nursing home, but my mother pointed out I was the only one using the hallway bathroom (I try to stay hydrated and drink a lot of water, so I end up visiting restrooms frequently). I always wash well, shut off the faucet with paper towels, and use an edge of my coat to open the door handle when necessary ... but somehow, I screwed up.

I’m actually a helluva germaphobe, which you’d never know to read the atrocious former habit I’m about to describe below. Perhaps needless to say, I have ceased this dumb OCD habit you’ll be reverse-entertained by, below. I stopped. Cold turkey.

Either place I picked up C.diff, the truth is I had a dangerous, irresponsible and insipid habit of inserting a finger in my mouth while I thought no one was looking, as it’s such a ladylike and classy habit, to scrape the insides of my cheeks smooth. Let me elaborate, this being simply fascinating information, by saying no dentist or dental hygienist had ever seen anything wrong with the skin inside my mouth. I would just feel a little piece of exfoliating skin, and scratch at it the way someone nervously picks at their ragged fingernails to ‘smooth’ them down. Oh, I would ‘be certain’ my hands had been washed, or so I thought. But I was startled to catch myself a number of times absently engaged in this terrible habit, suddenly realizing I had not first washed. So I’d spit out the car door and pray I’d ‘get lucky this time,’ and chastise myself to stop this ridiculous habit.

I’ve not had severe D during this ordeal, but more loose-intermittent. It seemed to be firming up the past few weeks post-Flagyl, but I’d set myself back on the weekend eating something spicy, or eating too fast, etc. One week ago, for 2 days in a row, I actually had 100% normal stools. I was dancing a jig! It must be gone! But that great feeling was short-lived.

Got cocky, I guess and ate a mildly spicy beef stick, then maybe ate too much or too fast. Got mild D. Happened over the next few days, a few more times. I’d take Pepto Bismol. Then, no stool for the next couple of days. Been firming up since.

Did a stool test, one month since last dose of Flagyl. Positive. Treating again with Vanco, since I’ve been experiencing symptoms. So that’s where it’s at. I had read about and told her I wanted to go straight to Dificid, with a taper. But insurance would not cover Dificid (the out-of-pocket cost would be $5,000!). Insanity! She said I had a better chance of insurance covering Dificid (even partially) if I first try a course of Vanco, so we are just hoping the Vanco works. Is Vanco worth a try, or turning out to be kind of useless, like Flagyl? I’m freaked here a bit.

For cleaning, I’m surely overkilling but I’m too nervous to relax on it. I slowly went through my old underwear and threw every pair out after every single day I wore them, rather than wash them - even separately. I had a small stack of white underwear, and I would bleach them with the towels. After re-testing positive, I freaked out and even threw those underwear out. So yes, I’m back to wearing one pair per day that I actually throw away afterwards. I have been washing my outer clothes along with the family laundry: socks, shirts, bras and pants, pajamas. I have never messed myself. Regardless, despite having undergarments on between yourself and your outer clothes, is it necessary to wash your pants separately? I have not been doing this.

In the shower, I lift up my family’s washcloths and shampoo bottles to a higher level, in order to not contaminate them at waist-level as I wash. I keep the showers clean, but I have not been bleaching it after every shower. I threw out all of our old white washcloths, and started over. We love those little cheap, thin white washcloths from Target. I only use these new washcloths to wash my face and general body – but not my nether regions. For that, I keep a roll of good quality, quilted paper towels next to the shower. I tear off two pick-a-size paper towels, fold them in half to fashion a ‘washcloth’ and soap it up. I use this soapy paper towel to cleanse the full southern region. Then, I bend low near the drain to rinse off the paper towel, crumple it up tight, and carefully toss it in a plastic bag. Finally, after I finish rinsing myself everywhere, I carefully wash my hands twice one more time before shutting off the shower. I dry most of myself with my regular terrycloth cotton towel and finish up by using two more paper towels to dry below the belt, and throw them away. Probably overkill! But nerves!

I’m bleaching the toilet again, and I spray it frequently with Clorox Germicidal spray and wet-wipe it down with scalding water and paper towels. I am thorough and it squeaks.

Nagging concern: is it necessary to bleach after every time I go pee? I have not been bleaching it just to urinate. I have never messed my pants. The D, when I have had it, has not been severe. My stool is once daily and not too far off from normal. I’m now starting day two of Vanco. What to expect for normal BM? Give it 3-5 days? If not perfectly normal by then, do I request or insist on a taper at the end of the 10-day course?

WHY oh why cannot we just be prescribed FMT?? It sounds like a reliable, 95% cure success! Oh woe.

Anyone heard of microbiologist Michelle Moore’s website and alternative/natural plan to treat C.diff? I’m liking the idea of herbal approaches to combat spores. Thoughts, experiences, opinions?
http://www.c-difficile-treatment.com/ca ... A8QAvD_BwE

I’m walking with as brave a face as I can, I know I must ... but inside, I’m just quaking with anxiety. I’m trying to believe life will return to normal!

I was the type of chili pepper addict who would keep a bottle of dried chipotle beside my salt & pepper shakers. Now, I mourn those enjoyable, carefree days. If I must eat bland the rest of my life, so be it, I’ve had my peppery salad days. I just want this horrific bacteria gone.

It seems to me we must all carry some C.diff as part of our normal flora, kept in balance; how else would people acquire it via antibiotic use?

Any idea when you’re no longer considered contagious and can stop bleaching?

Thank you to those of you who have had the patience to read this far. Namaste and Godspeed to you in your efforts for restored health.

Ril
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Re: My story, 2nd round, many Q’s, scared

Postby Ril » Sun May 13, 2018 9:35 pm

Hello Believe and welcome to the site. Please read the first thread on rules for posting.
Sorry you have c diff. I wonder what your test result was and if you were positive for toxins. You don’t describe your symptoms clearly but it doesn’t sound as though you have had severe symptoms, especially your relapse. If you were not having multiple watery stools daily it is not considered a relapse and is part of recovery. Your stools are not usually “normal” for quite a while and some drs may misinterpret test results unfortunately. I am not saying that happened to you...just wondering.

In terms of Michelle Moore, that has come up here before. It is up to you but not accepted medical practice therefore not something we ascribe to.

Flagyl is no longer considered an adequate medication for treating c diff so don’t be discouraged. Chances are still very good that you will get well. Most do...I had a course of Flagyl then recovered with vanco.

If you have any questions follow up with a GI. Simple cases can be treated by a PCP but personally I am comfortable with a good GI to follow up with in case of any questions or problems.

Rita

beth22
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Re: My story, 2nd round, many Q’s, scared

Postby beth22 » Sun May 13, 2018 9:54 pm

I agree with Rita. I would follow up with a GI. I did not bleach that much and never after urinating. I took no extra precautions in the shower, but I did use a second towel for the below the belt areas. My husband shared my bathroom and he never got c diff and I had many relapses. I never bleached the clothes either. I did wash my underwear separately, but I did not throw them away unless they were soiled, which only happened once or twice. People do different things, but I never felt comfortable bleaching that much and both my husband and I are very sensitive to bleach and get sore throats and respiratory symptoms. So, he did not want that smell lingering in the house.

AllisS
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Re: My story, 2nd round, many Q’s, scared

Postby AllisS » Mon May 14, 2018 12:02 am

Hi Believe, you are going overboard with the bleaching and sanitizing; not necessary in absence of soiling or uncontrollable diarrhea. Clorox makes a product that many on this site, including me, have used; it's called Clorox Germicidal Bleach Wipes. They aren't available in retail stores or pharmacies for some reason, only online; you can buy through Amazon or another online site. Get a box of disposable gloves to go along with them; you can use them to wipe down non-porous surfaces such as bathroom counters, door knobs, handles, even TV remote. They are more user-friendlier than bleach:water solutions that you need to mix yourself, though some people prefer the latter.

You're correct that the finger-in-the-cheek habit is risky, especially in a healthcare setting. It might even override the benefits of thorough handwashing, which, as you surmise, is key to preventing C. diff. When I've visited people in the hospital or rehab since having had C. diff five years ago, I avoid eating anything while in the patient's room, though I've visited hospital cafeterias with no ill effects. If you can't break the habit on your own, you may want to enlist the help of a CBT (cognitive behavioral therapist) to do so.

I'm not as well-versed about FMT as others on the site. However, based on what I've read, FMT isn't necessarily a permanent cure-all; people sometimes need additional FMTs, e.g., if they should be unlucky enough to trigger a new C. diff infection due to antibiotic use. The unfortunate reality is that there is currently no way to insulate oneself against C. diff permanently.
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

roy
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Re: My story, 2nd round, many Q’s, scared

Postby roy » Mon May 14, 2018 4:20 am

From what you describe your colonised with c.diff and that's not the same as having c.diff as a disease.
Many Drs just look at a test result and assume you need treating if it's positive, that's totaly wrong!
C.diff is a common bacteria, it's everywhere.
It causes problems in hospitals and nursing homes because that's where people go if they are sick with something else and those places should be clean and not have any bacteria that might take advantage of their weak immune system.
It's not that there's a higher risk of catching c.diff in hospitals it's purely that c.diff should be cleaned away before it can cause sick people to become sicker.
FACT.
There's more c.diff on the doorstep of the average home than there is in a hospital!

C.diff is a normal gut bacteria but if gut conditions are right it can overgrow and cause problems (think weeds in a lawn), if your gut reacts to the overgrowth you become sick and need treating.
It's a big IF though! because some people could have a bucket full of c.diff and not become ill, it's their immune system coping with it just the way nature intended!
Treating in an attempt to get a negative test is dangerous, the treatment damages the good flora as well as the c.diff and can even allow the right gut conditions to develop that causes a full blown infection.
Personally I would not be taking another round of meds if I did not have symptoms of active c.diff.
C.diff colitis is the name of a disease caused by overgrowth of a normal gut inhabitant that's called c.diff
If there's no symptoms there's no disease.

Lisa33
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Re: My story, 2nd round, many Q’s, scared

Postby Lisa33 » Mon May 14, 2018 9:16 am

I relapsed two weeks after finishing a 10 day course of metronidazole (generic Flagyl) back in 2014. As the others said, Flagyl is no longer considered a viable treatment option. I believe it should never have been a treatment option. It's nasty side effects were more intolerable than the c-diff for me. I was put on a 14 day course of vanco which cured me. The odds are in your favor. It does sound like you are colonized, or have a mild case. I think you will be just fine after finishing the vanco. I am one that believes in probiotics and feel that it aided in my recovery. Replenishing good bacteria is key to keeping the c-diff at bay. Although I only relapsed once, recovery can take long for some. I would stick with bland foods for a while as to allow your gut and colon to heal. I would introduce new foods slowly and don't overdo it with spice until you feel like there is some sort of normalcy with your digestion and BMs. There may be some off days, usually more off days than good ones in the beginning. That's all normal. As long as you are not having the copious, watery D, things are going in the right direction.

Wishing you continued improvement,
Lisa

Believe
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Re: My story, 2nd round, many Q’s, scared

Postby Believe » Tue May 15, 2018 5:42 am

Thank you so kindly, Rita, Beth, Allis, Roy and Lisa for your caring responses!

Rita, what was your Vanco protocol? Another 10 days, like the initial Flagyl - or 14 days, like Lisa’s protocol? Did your GI pulse or taper your Vanco dose? I don’t want to offend my PCP, who says she sees a lot of C.diff - but I agree with you, Rita and Beth, I should prefer to ask for a referral to a GI. I’ll call this morning. I can’t imagine a GI could get me in as a new patient very soon, but it’s worth establishing contact. Beth, I’m so sorry you had suffered many relapses, and I dearly hope that experience has now passed!

I will dig around for posts about Michelle Moore’s protocol. If there are natural, herbal methods that can assist attacking any biofilm spores left after antibiotic treatment, I’m keen ...

I’m encouraged to hear bleaching is not necessary after urinating. I’ve never done it, nor shall I start. I’ve only bleached (1/2 c Clorox Germicidal in bowl, swish with brush, let sit 5 mins, flush 2x) after a loose BM. On days it’s been somewhat formed, I’ve not. I agree with you and Allis, too, about wanting to keep strong chems to an absolute minimum! I don’t like the smell, either and have long relied on pleasant, natural cleansers in general. I went nearly 2 months undiagnosed, and am stunned and relieved my family had stayed safe all that time.

I also prefer Clorox Germicidal products to the homemade bleach mix. I find the spray keeps the toilet surfaces wetted far longer than the wipes, but the wipes are indeed great for door handles and the like. Recently, I ordered a refill from Amazon ... but I had purchased my first kit locally, I think from Home Depot.

Roy, very enlightening information about the presence of C.diff in the environment! I agree and deeply appreciate your recommendations to exercise caution with treating. I’d not heard of the difference between being colonized and active infection. It’s been hard to distinguish. I think I’ve been colonized but also have had a mild infection that wasn’t resolving of its own accord, rather just seeming to be growing worse over time. I’m grateful it’s not been severe, even if symptoms have been a shifting question mark, whether active or part of recovery.

The second, recent PCR test detected toxin B. The first test detected A/B toxins; however, when I asked for clarity, my doctor said it wasn’t sensitive enough to distinguish. Confusing: either I’ve only had toxin B, or I had both toxins before and toxin A has been wiped out. (Something must have been different about the second test, although it states it’s another PCR. The results are displayed differently; the first had tested for a crapload of bugs.)

My PCP is cautious about over-medicating. She had wanted me to wait minimally 6 weeks before retesting to be sure dead DNA had been shed, so stool test wouldn’t read a false positive ... but, because I still reported some symptoms, she expressed concern to ‘not mess around with C.diff’ and wanted to retest.

I better understand now that it can take a long time for the gut to heal and get reestablished, but it just seemed I was going in the wrong direction during the 4th week post-Flagyl. Initially, I had little setbacks, but the 4th week setback was worsening. For weeks since completing the Flagyl, I had been trying to determine whether my on/off symptoms were part of post-infectious IBS or existence of active C.diff toxins. Man, have I been flipping back-and-forth, elated to be healing and troubled to be brewing. Ultimately, my instinct is I had an active infection regrowing and regaining a foothold.

My somewhat forming stool had been gradually improving ... but then, by the 4th week, after two days in a row of *finally* having achieved a normal stool, I took a major slide backwards. And it was kind of unexplained. The Pepto-Bismol wasn’t helping as well as it had in earlier weeks, and instead of one dose, I went through a small bottle. I had not eaten any spicy tacos, like I foolishly had the first weekend. By that 4th week, I had D 2x in one day, not sure why, followed by continued loose/mushy stool over 2 more days. It seemed to gradually improve, only to have another bout of D the evening of the 3rd day, plus it had gained urgency. I went through a small bottle of Pepto.

I was getting rumbly, needing to once again eat less so I could safely leave the house, and losing weight again. A couple of weeks prior, after Flagyl, I had eaten as heavily as a gluten-free turkey burger and even a GF sandwich with a small amount of shredded lettuce ... I was hungrier and just able to eat more food, in general.

I decided to retest the next stool only if I had D - but decided I would not retest if it was formed. Finally, the stool I tested that arrived 2 days later was slightly improved, less urgent - but definitely, it was still not formed. It just wasn’t right. My setbacks in previous weeks had improved much more quickly.

Questions:
- I seem to be tolerating the meds well. But the hard, distended, gassy plumbing all throughout that just sits unmoving, especially in the afternoons, ugh! Horrible. I’m sticking with the proper, light diet of soft vegetable soup, GF rice noodles, tiny amounts of soft-cooked chicken, a little GF instant oatmeal containing quinoa and amaranth, and bananas. It could be a medicine side effect, not sure? But I also had this sometimes before starting the Vanco. Like a dysbiosis. Maybe starting probiotics would ease it. Any tips? Can you take Gas-X?

- Any tips for safely doing future stool tests, in the event it becomes necessary? I had a cheap, plastic toilet seat-style sitz bath, leftover from my post-cesarean section recovery days that was handy with a paper plate ... but I threw it out, freaked about it being germy after my first C.diff test result, despite it not getting soiled. I probably could have just used the Clorox Germicidal on it, and not have shot myself in the foot.

- I have been washing my outer clothes (not underwear) along with the family laundry. Seem okay or foolhardy?

Again, kind thanks for your patience and words.
K

Lisa33
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Re: My story, 2nd round, many Q’s, scared

Postby Lisa33 » Tue May 15, 2018 11:10 am

Only you can decide on the probiotics, but my opinion is that they were necessary in my recovery. Be aware that probiotics can cause gas and bloating in the beginning until your body adjusts. However, some cannot tolerate the probiotics at all or have to take them in small doses. I am not sure if Gas-X is ok, so check with your doctor. I personally did not want to take anything while I was recovering, however if symptoms are really bad, ask the doctor what you can do to help relieve them. As far as stool testing, usually the lab gives you that plastic bucket thing that goes on the seat. I think you can put plastic saran wrap over it or something. Just a thought. But ask the lab. I don't even want to get into my stool test method as I unfortunately became a pro at it, and little assistance such as the bucket thing was needed. LOL

I washed my clothes separately while I had c-diff and for a couple of months after. I'm sure it's fine to wash with the family laundry as long as it's not soiled, but it gave me peace of mind.

roy
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Re: My story, 2nd round, many Q’s, scared

Postby roy » Tue May 15, 2018 11:40 am

The c.diff killing power of bleach is measured by wet contact, it's 10 mins of wet contact to kill c.diff spores!
Wipes remove the c.diff and trap it in the fibers where the wet bleach kills within 10 mins but unless your very thorough you won't get it all.
If you use the same wipe on multiple surfaces you can transfer viable spores from the wipe to a new surface before the bleach kills them.
Wet bleach left on a surface for 10 mins gets it all.
The old way is the best way

PCR only tests for toxin B.
Toxin A would not be mentioned if they only did a PCR test.

Believe
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Re: My story, 2nd round, many Q’s, scared

Postby Believe » Tue May 15, 2018 12:11 pm

Makes sense, Roy! I will give the wipes a second look. I wasn't considering the way it traps spores in the fibers; I would spray a surface and wait 10 mins. making my own 10% solution until the spores were killed before I'd touch it with a wet paper towel to wipe it down. Gah! I've many boxes of surgical gloves. I even don the gloves for toileting still, and I'm probably no longer catchy having soft but formed stools the past few days. This thing does a number on your nerves and head. Glad we've got each other to check in.

Believe
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Re: My story, 2nd round, many Q’s, scared

Postby Believe » Tue May 15, 2018 12:13 pm

And yes you are correct, one pass per section, never transferred elsewhere, and disposed of in plastic wastebasket liners like the medical waste it is.

Man, that bleach smell can get so intense, sitting for so long, each day! I was spraying the shower like mad, I think overkill, and my poor young son said he couldn't breathe in there for a day or two. I had to chill out on the plastic shower curtain liner attack ...

martyR
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Re: My story, 2nd round, many Q’s, scared

Postby martyR » Sat Nov 09, 2019 7:30 pm

The only reason I joined this forum was to share my success story, and I gotta say, I think readers here need to hear it:

I was blind-sided with C-diff after a round of amoxicillin, and went for a month and a half before I finally got my stool sample results that confirmed my suspicions. By that time I had lost 30 lbs of muscle mass and felt like I was going to die. When I read about horror stories of trying to kick this thing and the latest standard antibiotic cures I was unsettled to say the least (I have tinnitus and hearing loss already!), so I spent a day searching the internet for alternatives. I am sooo glad I found Michelle Moore's book! She is obviously concerned about people, and gives her findings with the statement that you don't have to buy her products to get cured. Even though she is technically knowledgeable and capable, the book is written in a way that anyone can quickly read, understand, and act upon. In addition to the direct c-diff cures, she addresses the health issues that can help you cure quickly--something woefully missing from my doctor visits.

To the point--I got on her website and ordered the products for her 3-pronged cure, but I didn't want to wait the 5 business days for delivery so I went to local stores and bought her recommended antimicrobial herbal cures and began treatment right away. I started healing IMMEDIATELY -- the same day! By the time I got her products i was very much on the mend, and within a week of starting I was almost back to normal, with only good side-effects. The benefit of her products, which she legally can't push in the book, is that in addition to the antimicrobial effects, you also get the two other things that help you mend quickly and painlessly: a probiotic blend that actually works and the natural detox to help rid you of the side effects of all that dying c-diff bacteria.

I got this help just in time. When the doctor called me 2 days after I started Michelle Moore's protocols, I was told I had to get in right away--urgent!!! When I said that an herbal cure was working I was treated like a nut job. The doc called back with an emphatic order for me to come in because of the seriousness of my infection. When I finally told her "I wouldn't take more antibiotic if you put a guy to my head," she finally backed off, only to offer a few more warnings about my mistake. When I was cured in short order, there was absolutely NO interest in what this treatment was. Anyone see a problem here?

Ril
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Re: My story, 2nd round, many Q’s, scared

Postby Ril » Sun Nov 10, 2019 8:46 am

Welcome to the site. Please read the first thread on rules for posting.
It would have made more sense for you to start a new thread for your post.

Briefly, Michelle Moore’s book has been discussed many times throughout the years. If you put her name in the search bar you can find those discussions if that in fact is your goal. If you just want to spread your opinion that won’t matter to you but you will find it is not accepted here that her method is effective or safe. Some people fight off c diff on their own just by stopping the offending antibiotic.
While that does not sound like the case here, you sound like an ad for her book and method and you will not find support for a method that “cures” you in a day, you have to purchase from someone not recognized as authentic and has no medical basis for
addressing a serious infection. If it truly worked it would not still be a secret.

While we do not discourage ancillary holistic or naturopathic medicine, we do not endorse ignoring traditional medicine as treatment for C. difficile on this site.
Rita

D1dad
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Re: My story, 2nd round, many Q’s, scared

Postby D1dad » Sun Nov 10, 2019 10:21 am

I guess testing positive could mean you have it, and everyone’s story is different. So did you take antibiotics before you got sick or just picked it up and got sick? Your case is nothing like mine was and sounds very mild at best. I mean I was using the restroom 20-30 times a day and passing things I never wanna see again. Sound like your doc should be educated a little more on cdiff and you need a specialist.

NanciT
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Re: My story, 2nd round, many Q’s, scared

Postby NanciT » Sun Nov 10, 2019 10:53 am

Martyr
I want to 2nd Ril's response.
We have periods of time as moderators and those who are Administrators have addressed all sorts of "cures" and Michelle Moore is one of them. We are here and all donate our time to support other's through this very difficult illness. If you are well and recovered, we are always so happy to get that post. But we are also careful to focus on support through this very difficult illness.

NanciT


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