Feeling pretty pretty pretty good

[JimV715]

Thank you to all who provide helpful insight and guidance on this forum. My journey started in April of this year. A round of Augmentin for a sinus infection and, boom!, CDiff hell.

Round #1 went to the ER, had a stool test which was positive and they prescribed Flagyl for 10 days. I had no idea what an awful medication that is. I work for and am treated at a great medical center in Pittsburgh, UPMC, and yet their protocol for CDiff still starts with this drug. I am going to be working to try to alert anyone I can that they simply must stop. Flagyl seemed to be working well for the first 5 or 6 days but by the end of the course I was still having symptoms, loose stool, urgency, classic odor etc. Within a week the symptoms were the same or worse as the original bout and I tested positive again .

Round #2 By this time I had done some homework. I knew that Flagyl was not the way to go so on my next visit to the ER (this was happening on the weekend otherwise I would have gone to my PCP), and the ER doctor tried to prescribe Flagyl again. I said NO THANK YOU and asked for Vancomycin. Did that for 14 days. It was slow going on the recovery. I feel strongly that the Flagyl set my microbiome back a very long way and now with the vanco my system was completely depleted of good bacteria. I was ok by the end of the course, but within a week the symptoms had returned.

Round #3 This time I had scheduled an appointment with an infectious disease physician at UPMC. If I were to fail a third time, her office would coordinate and administer an FMT. Her recommendation was a pulse approach. From what I have read here, the protocol she recommended was not traditional. It consisted of 10 days of Vanco, 4X followed by a 1X every third day pulse for about 45 days. NO TAPER period. Her rationale was that the tapering provides what could potentially be an unnecessary amount of this very powerful antibiotic. The real recovery comes from the pulse portion. Allowing the microbiome some time to repopulate with good bacteria while keeping the bad stuff at bay once every third day. Knowing that this approach was not common and having already been through the absolute hell of two bouts of this, I was skeptical. I also met with two nutritionists and got what I feel was some great help with the probiotics and diet recommendations they made.

During the course of the vanco, I took the following:

Saccharomyces boulardii - 3 times per day Florastor brand as well as one sold by the nutritionist.
Healthy Origins Brand probiotic 30 Billion 2 times a day
Curcumin (turmeric) 2 times per day
Zinc - once a day
Glutamine Powder in water twice a day
I cut out most dairy and almost all caffeine

The ID doctor didn't think probiotics would help at all and she recommended a diet with lots of fresh, leafy green vegetables to restore the good bacteria. I did skip one recommendation that I take something called Mega Spore. It's basically a probiotic that comes from soil, has some resistance to stomach acids and such and is therefore able to repopulate the gut. It sounded a bit too scary.. But I did like the idea of getting some naturally occurring bacteria from soil. So I ate a lot more fresh mushrooms that I didn't wash as thoroughly as I would have before. I did the same with fruits and vegetables and also simply did some gardening outside. Got my hands into the dirt! I have no idea if that helped, but it seemed to make sense.

I feel like the glutamine was very helpful in helping to heal my colon. It took a LOOOONG time for me to begin to feel as though all of this was working. Stools remained loose and urgent throughout. I feel like nerves and negative thinking exacerbated the various issues, (I read too many posts on this site). On August 5th after over 50 days on vanco I took my last 125mg pill. And I waited.. The first few days seemed like most of the rest, but after a week, then two, three four, I started to feel really good. I had a setback here and there. One night a dinner that consisted of some fried brussells sprouts and beer was reminded that I was still in recovery. But that was just one day.

Now it's been almost seven weeks and I have had no signs of any trouble. I realize I need to wait probably another month at least before I can be confident that this is possibly over, (I don't want to jinx it) but for now I am definitely appreciative of where I am. I look forward to posting as a success story on the other forum, but I''m being cautious for now. Thanks!

[NanciT]

Great to hear you are doing so well! As far as the ER, yes it's disappointing that don't even look up the correct protocol for CDIFF treatment, it's been awhile since Flagyl has been removed.

The Vanco schedule is different but it worked for you so that is fantastic! I was on a 3 month pulse/taper which did not work for me.

I also find it interesting the ID said no to the probiotics. My GI also told me I was wasting my money on VSL#3. I stopped it and then ended up with terrible IBS, started it again and all is well, so it is helping me.

All of this is very individual but the goal is getting better and It's great you are doing well!!

Wishing you continued wellness!

NanciT

[JimV715]

Thanks, Nancy. I hope my story gives anyone who is feeling as hopeless as i once did some level of encouragement. There are ways to beat this thing. Patience and diligence are key.