I was seen yesterday by Infectious Disease Doctor

Treatments, possible treatments, unsubstantiated/unproven treatments. Consult your doctor first.
Ismaila
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I was seen yesterday by Infectious Disease Doctor

Postby Ismaila » Thu Aug 18, 2016 2:28 pm

Dear Friends,

I am four months post Vancomycin treatment, that - it looks until now, and knock on the wood - worked. Yesterday I visited an Infectious Diseases Doctor in a major hospital where I live, who is also a Professor at the Georgetown University in Washington D.C. I made this appointment a month ago because I really needed some reassurance, and pieces of advice from a doctor who is more knowledgeable than my GI. I am posting this, because I think it may contain useful information for many of the people on the Forum, and may be useful to our dear moderators.

Here is the summary of the appointment :

1. No one can tell how long it takes for a person of average health to get 100 % after C Diff. His experience with many patients is that it takes many months. He just stopped short of saying; Maybe up to one year.
He says that Gut Biome is such a mystery that no one really knows what it takes for it to repopulate itself with good bacteria. Medical community is still researching it, and with no great results either. That is why some probiotics do wonders for some people, and absolutely nothing for others. He personally does not believe that probiotics can do wonders, because, every single stomach is different, and may have lost this or that kind of good bacteria after antibiotics.. The probiotics must be changed after a month if they do not make difference, because, otherwise it is total waste of money. He told me to, at this point , Stop VSL# 3, and stop Florastor . He suggested another one, only because many of his patients had great success with it. However if it does not work within a month, stop buying it - he added.

Jarro Dophilus EPS; http://www.iherb.com/Jarrow-Formulas-Ja ... -Caps/7006. Take 2 in the morning and 2 in the evening, for a month or so. Again - if it does not work, it is not worth trying.

2. Pepto Bismol is basically over-the-counter antibiotic, and that is why he does not like it much. He told me to stop using it, especially regularly and in larger doses. He says it kills good bacteria too, and also makes stomach become lazy to do what it needs to do. However, Pepto Bismol CANNOT cause a relapse.

3. The most interesting , and most important piece of advice he gave me, was: Go back to your normal eating habits ! He claims that my natural ( pre C Diff) gut biome was populated with my own good bacteria mostly through the food I ate all my life, and what I love to eat. In order to give it a chance to recover and be what it used to be, you must go to the normal eating habits at this point.

4. He told me this too: You DO NOT have C Diff any longer -it is obvious on the basis of what you told me, how many months passed since treatment, and my listening to your stomach through the stethoscope. Do not re-test, unless God forbid, serious symptoms return.

Dear friends, and especially moderators - Bobbie, Roy, Lisa, Allison . and others - I hope this gives you a little bit clearer picture about the hard and long road to recovery, and helps you decide how to continue to make yourself 100% again!

All the best to all,

Ismaila

amyc
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Re: I was seen yesterday by Infectious Disease Doctor

Postby amyc » Thu Aug 18, 2016 5:37 pm

I'm glad you had such a good visit! I tried the Jarrodophilus EPS and it gave me D like crazy :). Don't panic if you have a reaction to it. My husband had just had back surgery and got C from the pain meds, so I gave him the rest of the Jerro and it helped him a lot with C, and he didn't catch my C diff.

georgina
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Re: I was seen yesterday by Infectious Disease Doctor

Postby georgina » Fri Aug 19, 2016 2:23 am

Thank you for the posting this Ismaila !
Like Amy , I tried too the Jarrow EPS and it did not work for me , actually no probiotic besides Saccharomyces worked for me so I'm not going to bother spending money on them , but it may work for others. It would be soooo nice to go back to our old eating habits but as you know , it's impossible. You can't just eat anything you want when you have a sensitive gut , unless you wanna spend several days on the toilet ( I would love a portion of french fries with cheese on top of them and some BBQ ribs and some pickled cornichons but they will put me on the toilet in 15 minutes) ; but who am I to disagree with a doctor! He's right about the long recovery tho , it does take time.
Wishing you continuos improvement Ismaila

Lisa33
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Re: I was seen yesterday by Infectious Disease Doctor

Postby Lisa33 » Fri Aug 19, 2016 8:29 am

Thank you for sharing, Ismaila. It's interesting to get different doctors perspectives. The frustrating part of this whole thing is that there are many different medical opinions on c-diff and its recovery. I can tell you that they all will give different recommendations when it comes to probiotics and diet. I truly feel that with recovery, it is very individual, and you just have to find the right balance with diet and probiotics.

Thank you for sharing,
Lisa

Ismaila
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Re: I was seen yesterday by Infectious Disease Doctor

Postby Ismaila » Fri Aug 19, 2016 9:54 am

Actually, that is the only reason that I posted it: to get yet another expert's opinion.

Going back to normal eating habits makes sense in terms of re-populating with so called your own best bacteria. I do not know, like everyone else, it is not easy.

As to Probiotic, he said what you all say: if it does not work within 4 weeks, it is not worth spending money on.

I also thought that Pepto Bismol thoughts were worth knowing.

All the best to everyone,

Ismaila

ppp67
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Re: I was seen yesterday by Infectious Disease Doctor

Postby ppp67 » Fri Aug 19, 2016 11:31 am

Post CDIFF, my doctor told me to go back to eating my regular diet.
He also said it can take months to heal.
So I think in our case, we were the lucky ones where the damage was not too bad.
Perhaps others with more serious damage or told to watch what they eat.

beth22
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Re: I was seen yesterday by Infectious Disease Doctor

Postby beth22 » Fri Aug 19, 2016 1:46 pm

I have used Pepto Bismol both long term and short term. I only use it now for a day or two if I get D or frequency and not often. It even says on the bottle to not use it for more than 3 days. However, a few years ago, I was taking it every day, but only about 1/2 teaspoon with my dinner. This was per my doctor's advice. I had SIBO and it seemed to calm things down and enable me to eat without having D right after. Eventually, I stopped. I know they give it for microscopic colitis for about 2 months, full strength. But, as between taking Pepto for D rather than Imodium, I would always opt for the Pepto because Imodium stops people up too much. I also have tested positive for c diff before and under the advice of my doctor, took Pepto rather than going back on vanco, since it was a mild case and it worked. I think we have to use whatever works for us.

As far as probiotics go, most of them make me feel worse and I tried various before finding that I tolerate small amounts of VSL#3 well, so I stick to that. If I don't take it, I notice a difference. My mother has been on Digestive Advantage probiotics since her bouts with c difficile back in 2006/2007 and has done well. She has had to take antibiotics several times and neer relapsed. She takes one capsule a day of the Digestive Advantage and at age almost 96, I guess she will do so for the rest of her life.

I don't think there are two doctors that will ever agree on anything, but it is good to get the opinions out there. Thank you for posting.


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