Alternative treatments

Treatments, possible treatments, unsubstantiated/unproven treatments. Consult your doctor first.
PattieF
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Alternative treatments

Postby PattieF » Thu Sep 15, 2016 2:25 pm

I just tested positive for the third time since May for c-diff. I had never even heard of this before! I'm so glad I found this site - yet wish I hadn't. I can't believe how this illness has taken over my life and right now I am so totally depressed and exhausted. Diet, exercise, weakened immune system. Sleepless night worrying. I can't help but wonder if I did something wrong to cause a recurrence. Did I wash my hands enough, did I flush enough, should I have cut my nails sooner, did I somehow infect something I use everyday and forget to bleach it, should I drench the entire bathroom in bleach every time (I'd never leave the room), was my laundry done correctly, should I throw everything I own in a vat of bleach, and on & on & on?

So now I am on a tapering dose of Vanco (first time tapering) and lots of probiotics. I figured out I'd be on this medicine for 5 weeks on this tapering system. I pray this will work but my history thus far doesn't leave much hope. It's been four months of tippy-toeing around this illness for four months.

I'm wondering if anyone has tried any other alternatives while using conventional treatments (or instead of). I'm at the point where what have I got to lose - while at the same time terrified to add anything new to my sensitive system. I mean I am in this nightmare BECAUSE of traditional medicine (Clindamycin after dental implant). And I've always been strongly pro natural medicine.

My daughter found this website: http://www.healyourselfathome.com/HEALT ... tment.aspx
It talks about conventional meds, pro and prebiotics, as well as turmeric and something called bentonite clay. Has anyone tried the bentonite clay? I did take one dose a week or so ago but had what I thought was a negative reaction, so discontinued. It was probably just a recurrence of the illness. I'm ready to give it another shot though - along with my Vanco.

I have a friend who swears that she and her husband were cured of c-diff after one 'ozone treatment' done by a naturopathic doctor. They were never actually tested for c-diff, but he had been in a hospital (in Canada) that had a lot of c-diff cases.

I can hardly speak to my GI doctor (who I've only met with twice) - he is very abrupt, and has a thick eastern Indian accent that is hard to understand. I saw him yesterday, and had a ton of questions, but it was: have you experienced, this, this or this? Then: let me check on your test. Then: it's positive, here's what I'm prescribing, see you in a month. I had a bunch of questions, but was so upset about the test results, that they didn't seem to matter anymore. But they do. Like can I take a probiotic drink in addition to the other probiotics, can I try bentonite clay, have you heard of ozone treatments?

So so so tired of this already. So much empathy to all of those who have suffered. Thanks for listening.

roy
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Re: Alternative treatments

Postby roy » Thu Sep 15, 2016 3:28 pm

Do you have D or are you treating just because of the positive test?

PattieF
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Re: Alternative treatments

Postby PattieF » Thu Sep 15, 2016 5:41 pm

Roy, I have D. Last test in mid-August was negative and for the last month no meds (although I suspect c-diff returned about two weeks ago and I just didn't get tested right away). Why do you ask? I don't think it's a false positive...but I suppose it's possible.

amyc
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Re: Alternative treatments

Postby amyc » Fri Sep 16, 2016 1:38 am

The clay might bind the vancomycin, so I would avoid taking it together. Clay comes from the soil, and clostridium spores are in the soil, so I wouldn't want to use it internally, but that's just my personal opinion. Unless they flood your entire colon with ozone (which would possibly kill you) I don't think ozone treatment would do anything for C diff. Sorry your doctor is a jerk. Maybe ask your primary care doc to refer you to a different one? Vanco tapers have cured many people, so the taper will probably cure you, but it never hurts to get referred to a better GI now since it can take a while to get a new patient appointment with one.

georgina
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Re: Alternative treatments

Postby georgina » Fri Sep 16, 2016 3:13 am

I tried bentonite clay , it didn't help!

roy
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Re: Alternative treatments

Postby roy » Fri Sep 16, 2016 4:18 am

C.diff meds clear the active infection but not spores.
When you come off meds the spores vegetate and become active.
It's then that your recovering natural flora can finish off the remaining c.diff.
During and shortly after finishing meds the active c.diff might be gone so a negative is likely but spores can still be there.
Opposite to that is that when the spores hatch you will test positive even though the c.diff is still being dealt with by your natural immunity.
Tests are very unreliable during the recovery and Dr's are supposed to judge if it's gone only by the symptoms.
Whatever med you take for c.diff the aim is to reduce the infection to a point when your recovering good flora can win the fight and finally complete the cure process.
It makes sense that there will be good and bad days after meds are withdrawn and it's part of normal recovery.
A full on relapse with frequent watery D needs treatment.
Bobbies 3 day rule is a good guide.
Recovery IBS can be very close to relapse symptoms but should not last more than a day or two.

AllisS
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Re: Alternative treatments

Postby AllisS » Fri Sep 16, 2016 8:50 am

Highly unlikely that anything you listed as doing/not doing would cause C. diff recurrence. Exhaustive cleaning is not necessary, according to the C. diff specialist who treated me a few years ago. Unless someone is incontinent, as might happen n a nursing home, there is unlikely to be massive contamination. You may want to buy Clorox Germicidal Bleach Wipes (available only online, e.g., at Amazon); they aren't to be found, for some reason, in retail stores or pharmacies. They are more convenient than mixing your own bleach solution and can be used on hard surfaces, especially those in bathrooms and kitchens; use them on countertops, handles, door knobs, etc.

You mention taking a lot of probiotics; however, probiotics themselves can cause GI symptoms. You may want to decrease your use of them for awhile -- maybe stick to one and forego the probiotic drink -- and see if that helps. As for the other, naturopathic-type remedies, they will not be useful, IMO, and may even confuse the picture by causing symptoms, as you note happened with the bentonite.

Clindamycin is the cause of C. diff for so many; it is the top-offending antibiotic. I hope you will fill out an Adverse Event Report about your experience with it on the FDA website (you can use the link at bottom of my post to access it). Hopefully, at some point, FDA will begin to more tightly regulate this drug.

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

PattieF
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Re: Alternative treatments

Postby PattieF » Fri Sep 16, 2016 12:52 pm

Wow, I was really feeling it yesterday with that post. Sorry for whining... but I imagine you all get it.

Roy, I don't know if my symptoms are typical, or if there are typical symptoms. This might be a TMI topic... but I felt I was getting back to 'normal' function for a few weeks after stopping the last 14 day round (non-tapering) then when I lowered my probiotic dosage (per doc's instructions), I got back off track with a few really bad days: W, M, etc. I've had a lot of gut aches, and a couple of times really bad pain. This is hindsight talking about probiotics - I didn't make that connection right away. I hope I'm not being treated for no reason! I was trying to heed Bobbie's 3 day rule, but having doubts and basically continuous issues of varying degrees, if that makes sense. The spores are scary though!

I do need to find a doctor that I can actually speak to and understand, amyc, and who takes the time to listen to me. I don't think he is necessarily rude - he's probably just as frustrated as me that I don't understand him. I guess. Just like the probiotics, the recommendation for the clay is to not take it at the same time as the Vanco. I have decided to not take it right now - too much going on. Thanks Georgina, good to know how your experience went with bentonite clay. I feel like it must help some people, at some time. Maybe after the Vanco to continue to eliminate it??

AllisS, I did buy the Germicidal Bleach wipes. And germicidal bleach. My husband remains unaffected but I am certainly more susceptible to it now... Scary spores. I'm on 4 Florastor a day (2 tx day) which the GI had me on last time AFTER the Vanco treatment since I didn't meet with him right away. That did seem to help before. Plus he wants me to take one other type of probiotic a day. I just started this two days ago, and I think I will stick with it for now since I'm trying to go with the flow (haha - no pun intended there). And then there's the Benefiber he has me taking...

And oh yes, you can bet I filed an Adverse Event Report about Clindamycin!! I'm quite angry about this.

BTW, I think the probiotics and Benefiber and even the Clorox Germicidal Bleach wipes should be provided by the docs and included in their fee so we can maybe get the insurance companies to pay for them and/or take a medical tax deduction for them. Stuffs expensive!

Thanks everyone!

kelseym
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Re: Alternative treatments

Postby kelseym » Thu Dec 08, 2016 1:15 pm

Hi PattiF - how did you respond to your taper? I've been about a year now off a vanco taper, I took VSL#3 DS, florastor, culterelle and enteragam. It did the trick although the post infectous IBS continues and I ended up with "Interstitial Cystitis" likley caused by irritation to my bladder from the vanco. NanciT also had post Vanco bladder irritation. I do believe we both have found things that help with that. Hope your taper went well!

Bobbie
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Re: Alternative treatments

Postby Bobbie » Thu Dec 08, 2016 6:12 pm

I have IC, too. Thank you, c diff. See info,about UTIs in CDI.


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