When Should I See An Infectious Disease Specialist?

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Rusty S
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When Should I See An Infectious Disease Specialist?

Postby Rusty S » Sat Apr 27, 2019 4:34 pm

The last line of the 3rd post of this thread ("Rules of Posting, Standard Introduction, Testing, Passwords")...

viewtopic.php?f=1&t=12840

...says...

"Yes, you can be +ve for CDI with formed stool. Generally such patients have cramping or gas."

...which causes me to wonder in the back of my mind if I have some sort of low grade lingering infection. I was treated with Flagyl in November of 2017 (which at the time of writing this is 1.5 years ago) and have had a mild lower left side discomfort and flatulence that has waxed and waned this whole time. During the "flare ups" I'm more likely to have symptoms that are known to be associated with colon infection/inflammation like increased number of BMs per day (up from 1-occasionally-2 to 2-occasionally-3), feeling of incomplete bowel evacuation, and elevated mucus production (though only semi-common and generally not excessive more than once every 6 to 8 months).

So, without full blown "D", having BMs less than 3 times per day, and no fever or other syptoms of being sick, I feel stuck. Both my GP and GI doctors were initially uncertain, but gave me lab orders for C Diff testing in the event it "came back"; I've been in this cycle so long the lab orders would have to be re-written at this point. I occasionally search this forum for others with the same issue and finally stumbled upon the quote above which is noted to have come from a C Diff expert. After an obsessive amount of research online for concurrent answers from reputable sources, I'm wondering if this is a result of the Flagyl causing long term damage to my gut microbiome making me susceptible to digestive upsets from other causes and toxins produced from any C Diff spores that had been laying dormant.

This brings me to an Infectious Disease Specialist. The initial GP did blood work then sent me to a GI doc, which resulted in a Colonoscopy, biopsy, and stool culture. That ruled out other potential conditions and I was treated for C Diff, which I responded well to... at first. At this point, if all signs point to this being a side effect of infection, would it make sense to find an Infectious Disease Specialist and follow up? As far as I've read, on this forum and elsewhere, I don't sound like I meet the typical criteria of a relapse *or* reinfection; though several people have talked about "not being the same since". Not sure where to go with this from here. Thoughts?
Last edited by Rusty S on Sun Apr 28, 2019 5:49 pm, edited 1 time in total.

beth22
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Re: When Should I See An Infectious Disease Specialist?

Postby beth22 » Sun Apr 28, 2019 2:06 am

I've never been the same since either. I would either see an GI that is well informed about c difficile or make an appointment to see the ID as you mentioned if you are concerned that it is still an infection. If it is IBS or IBD, then a good GI would be better equipped to treat those conditions.

Rusty S
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Re: When Should I See An Infectious Disease Specialist?

Postby Rusty S » Sun Apr 28, 2019 6:01 pm

I was tested during the colonoscopy for a host of things, including IBD conditions. The only thing that was positive was C Diff, and I responded well to Flagyl, so that brings me to the Post Infectious IBS question: To my understanding, IBS is more a syndrome rather than a specific illness, so I'm wondering if it's an issue of microbiota imbalance taking much longer to resolve than was previously expected post-antibiotics (there's been quite a bit of buzz about that lately; the most shocking was a study where it took up to *4 years* to fully return to baseline after Flagyl). This has me on the fence of which specialist to see. I just don't want to go to another appointment where the Dr says "well, you're not exceeding the 3x3 rule and you generally don't feel sick other than the cramping and gas, so, tough-poopoo-pun-intended".

beth22
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Re: When Should I See An Infectious Disease Specialist?

Postby beth22 » Sun Apr 28, 2019 10:39 pm

Some people, like me, developed SIBO after c difficile where there is an overgrowth of undesirable bacteria in the small intestine. There is a breath test for that. A GI that deals with motility issues would be the person to see. I saw a motility specialist.

Rusty S
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Re: When Should I See An Infectious Disease Specialist?

Postby Rusty S » Mon Apr 29, 2019 9:47 am

So, what conditions differentiate whether a person should see a Gastroenterologist vs an Infectious Disease Specialist?

Obreezy
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Re: When Should I See An Infectious Disease Specialist?

Postby Obreezy » Wed Jun 05, 2019 12:55 pm

Did you ever end up seeing a specialist or getting further testing done?

Rusty S
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Re: When Should I See An Infectious Disease Specialist?

Postby Rusty S » Wed Jun 26, 2019 2:09 pm

I called a highly-rated Infectious Disease Specialist in the area, and they said they normally deal with patients that have an active positive diagnosis, and that I should follow up with the Gastroenterologist that'd been treating me, first. I made a Gastro appointment for a week out, but felt so normal 48hrs before the date that I cancelled under their recommendation when they called to confirm. Basically, if I went in and said "I was treated in November of 2017 and symptoms have gradually improved over time and I feel perfectly fine at the moment" the doctor would be like "good deal, buddy, glad to hear it". After all the additional research I've done, it looks like the timeframe to return to baseline is a couple of years, with 80% of the recovery happening in the first 20% of the recovery period, and the last 20% taking the remaining 80% of the time. It sucks, but there doesn't appear to be anything you can do to fully repopulate quickly besides FMT, and that has its own issues, supposedly with introducing someone else's flora into your body (those weird stories of the host eventually adopting the BMI and immune responses of the donor... not something I wanted to risk even if its fine for many people).


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