SUCCESS STORY W/O ANTIBIOTICS

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.
beth22
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Re: SUCCESS STORY W/O ANTIBIOTICS

Postby beth22 » Sat Oct 20, 2012 12:17 pm

Joan - Thank you for posting that. My mother, when she was at the rehab facility where she got c diff, was treated with Flagyl and then vanco when she relapsed with c diff. She developed a VRE urinary infection. The only medication at that time (about 5 or 6 years ago) that would treat it only came in IV formulation and I can't remember the name of it, but it started with a Z. I had never heard ot it. Luckily, for her, it cured the infection because the doctors said there really was nothing else that would.

I know of one other lady who used Symbion and her symptoms got worse with it, so she stopped it after a few days. I think we all need to be mindful of asking our doctors, or other practitioners that we go to, about which supplements are safe to use. Two doctors told me to take curcumin. Had they not done so, I doubt I would do it on my own. I don't know which supplements could aggravate conditions that I have, so it is always best to check these things out.

jrhardin@usa.net
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Re: SUCCESS STORY W/O ANTIBIOTICS

Postby jrhardin@usa.net » Sat Oct 20, 2012 12:32 pm

I would add this to beth22's recommendation to check with our health care providers before taking any nutritional supplement:

And also go online to look for reliable information on that supplement. My personal experience has been that my alternative health care providers have been much more knowledgeable about supplements & their interactions than my MD's.

Joan

debdee
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Re: SUCCESS STORY W/O ANTIBIOTICS

Postby debdee » Sun Oct 21, 2012 12:42 am

Joan,
Thank you for all of your research on the enterococcus faecium. I feel like such a fool for taking it without looking into the bacterial strains. Normally I'm very careful, but since I got c.diff over 3 years ago, and have suffered severe sleep deprivation, I have not been "myself" and have not thought things through as well as I used to. I've been operating in desperation mode. I also had an odd case of c.diff where I didn't have the "D", so the doctors were not as helpful. I took the Symbion for a month or two. I have never been the same and fear I may never be well. In some ways I feel worse than I did with c.diff. I now have worse sleep issues. I'm never hungry. I can't gain weight not matter how much I eat. I tried taking Xifaxan again and redoing the stool transplant, but it did not work like it did with the c.diff. I ended up with a kidney infection. Then I was given ampicillin to clear that up. Ampicillin is supposed to kill enterococcus faecium too, so I was hopeful that it would take care of both problems, but instead I still have the kidney infection and all the problems I had with the enterococcus faecium. I'm so sad that my health may be ruined for life.

How are you feeling, Joan? Has the c.diff stayed away?

I see a ID doctor next Wed. to see if he can help with my situation. I'm also asking a naturopath for help. I'll see what both say. From what you posted, and from what I have read, I may have a bad situation that may never resolve. :( If I can't get better, at least I hope many people that are desperate with c.diff will read this post and be careful about the probiotics they take. I too am in disbelief that something like the enterococcus faecium would ever be allowed in a product sold to the public!

jrhardin@usa.net
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Re: SUCCESS STORY W/O ANTIBIOTICS

Postby jrhardin@usa.net » Sun Oct 21, 2012 9:30 am

Debdee,

Yes, my 2010 C. diff infection has stayed away since I found my way to vanquishing it with all those supplements & dietary changes recommended by my alternative medicine team: chiropractor, nutritionist, & the supplement-knowledgeable MD who works in our local health food store.

I certainly understand your decision to try Symbion when you were so weakened & feeling desperate & don't think you were a fool for doing that.

To remedy your current situation, would you be willing to work with the excellent nutritionist/healer Carol Hornig? She lives/works in upstate NY & has sessions over the phone. They cost $130/hr. She's very knowledgeable about C. diff & how to restore one's health balance after an onslaught against it like you've been through. Maybe set up an initial session & see if she regards your situation as hopeless. I very much doubt she will.

Here's her website:
http://deepnourishment.com/home.html

Joan

debdee
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Re: SUCCESS STORY W/O ANTIBIOTICS

Postby debdee » Sun Oct 21, 2012 4:39 pm

Thank you, Joan, for your kind reply. Yes, I will consider contacting Carol Hornig, but I must consider the cost..... I've spent so much on this disease over the past three years. Also, I do think the c.diff is not the issue right now. I think it is the enterococcus faecium. If she knows how to treat that, then I would like to work with her. Interestingly, I took Ampicillin for the kidney infection and the c.diff didn't come back, but the enterococcus faecium symptoms got worse. I think it's an opportunistic bacteria like c.diff and after taking the antibiotics, there was more room for it to grow. :( So, if Carol knows about that bacteria, that would be great! Also, I'm going to contact the FDA about the Symbion and why it's allowed to be sold. Thanks again for helping me!!

jrhardin@usa.net
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Re: SUCCESS STORY W/O ANTIBIOTICS

Postby jrhardin@usa.net » Sun Oct 21, 2012 6:40 pm

How about emailing your story to Carol Hornig & see what she replies? I've found she knows a great deal about a surprising number of things.

I'm not dealing with C. diff per se anymore either, but the aftermath of it, the structural changes it left in my gut, and she has been most helpful for this. We have phone sessions 6-12 weeks apart & in between I take the supplements she & Dr Hilty recommend. So yes, it costs money to work with her, but I'm determined to do what it takes to get & stay healthy.

Post C. diff infection, I became much more reactive to gluten & milk products. So now my diet is completely gluten & milk/cheese free. I'd also become intolerant of other grains so eliminated them too - all except rice. In the last few days I saw convincing evidence that my gut had become reactive to it too so am now also eating rice free. And I do have to say that my cooking has become more creative & the recent dishes I'm making have been quite delicious & nutritious.

As a life time baker, I found I was really missing baked goods so did some online research & discovered the excellent blog Elanas Pantry. So lately I've been baking wonderful things like banana muffins, orange/chocolate chip scones, & pear crisps using Honeyville's blanched almond flour instead of flours made from grains. They're lightly sweetened with agave nectar, are protein rich foods instead of empty calorie foods, & are low on the glycemic index. My blood sugar used to spike & then crash several times a day. Now it stays quite even, I no longer have cravings, & am a much happier camper. And my friends & family heartily approve of these almond flour baked treats.
http://www.elanaspantry.com/gluten-free-recipes/

Joan

debdee
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Re: SUCCESS STORY W/O ANTIBIOTICS

Postby debdee » Mon Oct 22, 2012 12:09 am

Joan, I'm glad you are doing so well and that the c.diff is gone. I too have food intolerances now. I recently discovered that I can't tolerate foods that are high in oxalates. Probably because I have leaky gut. Also, I've read that certain good bacteria in the gut "eat" oxalates, so I'm assuming I don't have those good bacteria to do that. Anyway, when I eat healthy foods such as spinach, quinoa, whole wheat (all are high in oxalates), I get a headache, worse insomnia, nausea etc... I've looked back over my food/how I'm feeling journal and I noticed that trend.

I will write to Carol Hornig and see what she replies. Thank you for telling me about her.

I wish you continued healing and health!

Debbie

jrhardin@usa.net
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Re: SUCCESS STORY W/O ANTIBIOTICS

Postby jrhardin@usa.net » Mon Oct 22, 2012 9:41 am

debdee,
Interesting about the effects oxalates are having on you. Don't know about spinach & quinoa, but there might be another good reason to avoid whole wheat (and all wheat). Take a look at the fascinating book WHEAT BELLY by preventative cardiologist William Davis, MD. He makes good arguments, backed up by a great deal of scientific evidence, for avoiding gluten/wheat altogether.
http://www.amazon.com/Wheat-Belly-Lose- ... 1609611543

This past summer I too thought I'd developed leaky gut: Along with returning to having frequent diarrhea, I was having profound sweats starting shortly after eating or drinking just about anything followed by feeling enervated. Then in September I was on a trip to Istanbul & various ports around the Black Sea with a friend who'd developed IBS after surgery to remove a chunk of twisted gut that had become necrotic. She suggested I take Imodium, which she had with her in abundance, so I could comfortably be away from a toilet long enough for us to enjoy our explorations.

I generally avoid Western pharmaceuticals after years of reacting badly to them, but she persuaded me to try it. Imodium has been around for many decades & contains only a single active ingredient. I knew that taking an antidiarrheal could be fatal if this was a return of C. diff, but it wasn't behaving like that - I hadn't yet been retested but felt sure in my gut that it wasn't. (Expanded GI Panel stool sample test results done after my return showed I was correct.) The Imodium, which I ended up taking as needed throughout our trip & for a while after my return, lessened but didn't stop the diarrhea ... but the 'leaky gut' sweats did stop quite completely & have not returned.

Here's why I was quite sure this diarrhea was from a cause different from C diff:
With Dr Hilty & Carol Hornig's help, my gut health had returned to being perfect for many months. Then, literally one day to the next, frequent diarrhea began. I now know the trigger for the extreme gut hyper-motility was emotional: dread & anger I began feeling about something I had to do the following day. Then, once that hyper-motility started, the switch just wouldn't turn off.

Another most interesting thing that happened on my trip was this:
The a storm the last evening produced rough seas & I, along with quite a few other people, developed mal de mer. Mine didn't include nausea, just even more diarrhea & generally feeling quite unwell. My friend had Dramamine with her & suggested we each take one. I'd never tried it before but again she argued that it had been around for decades, contained only a single ingredient, would let us get up to pack, & make us drowsy enough to sleep this night before the long flight home. The single Dramamine not only niftily stopped the sea sickness, let me enough a great night's sleep, but also stopped the diarrhea for 26 hours so I was entirely well all throughout our flight back to NYC.

When I got home, I looked up the ingredient in Dramamine & discovered it’s an antihistamine. This led to Google searching ‘histamines Clostridium difficile’ & ‘hypermotility C. difficile’ – and finding research articles on how mast cells in the gut can proliferate after a C. diff infection. I’d known, from prior research & talking with Dr Hilty & Carol Hornig, that C. diff produces structural changes in the gut walls – but didn’t yet understand what these changes were. Now I had the notion that the changes are in mast cell production & involve huge histamine reactions.

So now I’m off Dramamine & instead am taking high quality antihistamine supplements recommended by Dr Hilty & Carol Hornig, along with avoiding all gluten, grains, milk/cheese, soy and being mindful to keep my gut calm --- and can see this approach is going to return my gut to the good health it was in prior to that big emotional upheaval.

An interesting journey.

Joan

beth22
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Re: SUCCESS STORY W/O ANTIBIOTICS

Postby beth22 » Mon Oct 22, 2012 12:01 pm

Amyc has posted information about mast cell involvement several times. You can find the links if you go to the search section.

jrhardin@usa.net
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Re: SUCCESS STORY W/O ANTIBIOTICS

Postby jrhardin@usa.net » Mon Oct 22, 2012 2:59 pm

Many thanks, debdee. I'll check this out.

Joan


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