GI or Infectious Diseases Doc for C-Diff

[Ali-Mar]

Hi , I am new to C-Diff and so glad I found this group, it has been overwhelming finding info on the CDI

While traveling to Atlanta on Feb 5 , 2020, I started a severe watery D, over 15 BW per day for a about 3 days while stuck in a hotel. Last time I had antibiotics was in 2016 for H-Pylori, that is why doctors are confused why did I get C-Diff..
On Feb 7 I return back from the trip and went to urgent care right from the airport. All the test including C-Diff Antigen and Toxic B was negative however, the CT scan of abdominal report said inflammation and thinking of bowel wall stranding at the splenic flexure, suggesting “Unspecified Colitis”.

Doctor thought it is a virus and will eventually clear. But I continued to have D, but mushy instead of watery and 3 - 5 BM a days, fatigue, dry month and abd pain. 5 weeks later, myGi doctor re ordered C Diff test again but this time Toxin B Gene PCR and it was positive.

He prescribed 500 mg Flagyl 3 x for 10 days, while all my research showed Vancomycin is the better choice, even though I told him my co pay is the same for both drugs he insisted on Flagyl because is cheaper!! After 8 days of Flagyl I asked my primary doctor to switch me to Vancomycin, as Flagyl was not helping. I saw improvement after the 6 days of Vanco. The mucus stopped on the 7th day and down to 1 or 2 BM per day, but still mushy and no more fatigue, but still had the abdominal pain

Yesterday was my last day of Vanco, today is the 1st day off the Vanco. I took one VSL#3 probiotic in the morning (planing to take a second one at night) and some Pepto Bismol. I have dry mouth again all day and get so tired so easily today even by just talking on the phone. I also have abdominal pain and crumping today... I am afraid that 10 days of 125 mg 4 x day was not enough.

1- Is it normal to get so tired and have dry mouth after you finish the Vanco? I wasn’t while on the Vanco
2- Should I see an infectious disease specialist instead of GI for the C-Diff?
3- What is FMT success rate? My GI doctor says he performed 6 FMT so far and only 4 has been success at Scripps clinic.
Sorry for such a long post and thanks for reading it

[beth22]

Hello Ali-Mar and welcome to the site. You can find more information on the first forum for new posters.

I think an ID would be good. I'm surprised that you were given Flagyl as it is no longer indicated as a treatment for c difficile. Vancomycin and Dificid are. A positive PCR test does not necessarily mean that you have an active infection. I had positive PCR for over two years. Were you also tested for other pathogens or did they just do blood tests and c diff? Fatigue is common with c difficile, but also happens with other infections.

[Ali-Mar]

Thanks Beth,

BTW, I am Male 54 years old. They did a lot of blood work, but everything looked good, the C-Diff was a stool test, the the PCR positive was for the Toxin B Gene, it is my understanding if the bug is releasing Toxin B it is an active infection. I also did a C-Diff Antigen test last day of Flagyl ( 11 days ago) and it was positive. But it is my understanding positive Antigen might mean you are only carrier , but positive Toxin means you are infected

I didn’t feel so much fatigue while I was on Vanco - today is my 1st day off the med and starting to feel tired again. Is it mean I am still infected?

[beth22]

I had positive PCR for over two years. The hospitals here follow up a positive PCR with an EIA test to see if there is toxin and mine were negative. A positive PCR does not necessarily mean you have an active infection. The medication you took can also make you feel tired. Many also get vitamin deficiencies and that can cause fatigue.

[Elvish2]

Hi Ali-Mar,
I think it's really up to you if you want to go with a GI or an Infectious Disease (ID) doctor; although c-diff might be more in the ID doctor's realm, either should be able to work with you on treatment. What matters most is if the doctor is well-versed in treatment of c-diff and if they work well with you. I'm currently seeing a GI doctor (who is familiar with c-diff) because the ID doctor referral was a longer wait, and the office said if I needed to go the FMT route, the GI was the only one who could do that. But back in 2009 when I had c-diff, my GI was not well-versed in how best to treat c-diff, so I switched to an ID doctor.
Based on your experience so far with the current GI and their recommending Flagyl, etc, I would at least switch to a different GI doctor, if not an ID doctor!
And fatigue and exhaustion can linger for weeks, if not months, post c-diff infection, unfortunately. It really does a number on the system!

[BetsyS]

Welcome to the site! Sometimes you have to see both an ID and GI

I am 2 months out from my Vanco taper. I was referred to an ID after my first relapse, and learned a lot from her. She echoed a some of the advice I've read on this site. My fatigue was overwhelming, both from fighting the disease and the Vanco. Once I could tolerate them, she recommended a daily vitamin, and vitamins D3 and B12. Things have gradually improved, but I don't have all my energy back yet.. My ID has released me, but my IBS has been bad. She recommended I see my GI about it and GERD; she wants me off PPIs. I'm waiting for an appt.

[Ali-Mar]

Thank you BetsyS, Elvish and Beth,

Thanks for the info and suggestions, What is PPI?

I also thought to change my GI when he didn’t want to prescribe Vanco because of the cost. Not sure why he was worried about the cost to my insurance company!!!

I found another GI that has good reviews but the first available appointment is on May 27, that is too far out.

It is hard to find a doctor that has dealings with the C-Diff. Does Anyone know a good GI or ID doctor specialist in C-Diff in Sand Diego county?

Beth I thought the PCR is to identify the Toxin? And if there is toxin means there infection? Am I wrong?

[Ali-Mar]

Beth, see the following link for the EIA vs PCR Toxin Genes test. Sound like both are to detect Toxin? I had the Toxin Genes positive using the PCR method to test. Or am I confusing myself here?
https://medlineplus.gov/ency/article/003590.htm

[BetsyS]

PPI=Proton Pump Inhibitor. It's a medication such as Prilosec which reduces the production of stomach acid. Evidently it increases the likelihood of a C Diff recurrence. I have GERD, and have been on double doses of Prilosec for over 20 years. I have managed to reduce my dosage to once per day, mostly due to the fact I still can't drink coffee, but my ID wants me completely off of it.

[beth22]

The PCR picks up the DNA. A positive test indicates that the presence of that DNA is there, but not necessarily an active infection. That is why the hospital now follows up all positive PCR tests with an EIA. If the EIA is negative, then they consider that a negative test. It must be because I was positive PCR for over two years. I got the positive test after many years of not being positive when I was given strong IV antibiotics when in the hospital a few years ago. They tested me in the hospital and I was negative at the time, but about a month or 6 weeks later, I got WD one weekend and doctor wanted me to test, so I did. By the time the test results came back, the D had subsided, so I did not treat. Every subsequent test was always positive PCR, although I did not have D. I would have a day or two of IBS symptoms at times and took Pepto Bismol for it and they went away. Many times during that time period, I was on the C side. Then last year, the IBS symptoms really kicked up after my mother died, most likely because of stress and I was taking Pepto quite a bit. That lasted for a couple of months, but then when I tested again, to see if might be c diff, the test was negative and has been since then. I still get a day or two of IBS, but not usually with D - it is more a lot of bloating, gas, cramping, sometimes more frequent or looser stools.

If you are positive with PCR and have symptoms, then you need to treat. But, if the PCR is positive and you don't have symptoms, then you need to talk to your doctor to see what to do.

[Ali-Mar]

Thanks Beth,
Yes, I had positive PCR and I also had the symptoms, a lot of mucus and 3 or 4 mushy BW per day. I had WD only for 1s 3 days. The CT scan report also mentioned thickening of the bowel wall and unspecified Colitis
It my 2nd day off the Vanco, and so far so good , formed BW, but a lot of fatigue and abdominal pain and discomfort. I wake up many times last night because my baby finger and the ring finger were numb and sometime because of gas, and abdominal growling ( the feeling of having D, but not really having it)

[beth22]

When I went off vanco I had lots of IBS symptoms and many people do. If you can tolerate probiotics, take some, but don't overdo them either as they can cause gas, cramping and looser stools. Everyone is different. Some keep getting better and others, like me, would relapse after vanco. Just keep an eye on your symptoms, but bms don't go back to what they were before c diff right away and sometimes not for a long time. Try and be patient. You might have a few better days and then regress and have a bad day. I got food intolerances and had to figure out what would make symptoms worse. Add foods gradually.

[Ali-Mar]

Thanks Beth,
Just the C-Diff sound such scary infection the Colitis, Toxic Megacolon etc... the BM are okay today but I have a constant feeling for bowel movement and growling sounds and the usual abdominal discomfort.
How fast does the relapse happens, I have been reading it might be a week after stoping the treatment?

[D1dad]

The thinking when an Er or urgent care doc is that vanco needs to be only used in life and death situations. Not so much in the world of GI or Id docs who treat cdif. My GP is also the chief physician at a long term care facility and wouldn’t prescribe vanco unless flagyl didn’t work. FWIW, he didn’t prescribe the flagyl. I then went to see a GI who had an ID doc set in, both who do research at the university of Michigan, and neither were happy that I wasn’t prescribed vanco but also concluded that if I was able to beat it without “the cannon” of antibiotics, then that was a good thing. To many everyday docs are trying to aid in the prevention of antibiotic resistance and feel that handing out vanco like a zpak could be detrimental. I get that but cdiff can quickly turn deadly if it’s not nipped ASAP. As far as being tired and weak, get used to it. Prior to cdiff I was in great physical shape at the age of 45 and travelled all over the country for work and had the activity level that would make a high school athlete tired. For months after cdiff I was like the walking dead and just a workday was awful. A year later I’m able to do everything I could before including working out like the days of old, but it took months to turn that corner. Time is the greatest denominator here whether it’s relapsing or getting back to where you used to be. Every day, every hour puts you farther from a relapse and closer to where you were before. Once I hit the 30 day mark I wasn’t really concerned about a relapse, once I hit 6 months I was about 95% of where I once was.

[D1dad]

Your guts gonna grumble for a long time and the urge to go has to do with how many times you blew up the crapper when you were sick. It’s usually just tenesmus. Unfortunately, if your like me and never had it then it freaks you out. If your eating and taking supplements loaded with probiotics then stomach grumbling is amplified. I was the idiot who was taking handfuls of probiotics and eating yogurt and oatmeal like I was being paid for it, yet couldn’t figure out why my gut was bloated and sounded like the hall of a sinking ship. To this day a bowl of oatmeal and container of yogurt makes my stomach talk to people. I settled in on 1 brand of probiotics and switch it up every few months. Cdiff makes you take stock in everything you do and everything you eat. I concluded that my diet although pretty healthy lacked probiotics so I overdosed my system with them which in turn made things a mess and probably would have had the same effect on my 20yr old son.