Relapse after almost 2 months

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mattzkie
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Relapse after almost 2 months

Postby mattzkie » Thu Aug 02, 2018 9:28 am

So, here's my story:

Tested positive for c-diff for the first time on May 26th.
Started vancomycin 125mg 4x a day for 2 weeks and I was taking 1 pill a day of Culturelle probiotics (30 pills) while im on vanco. Anyway, last dose of vanco was on June 11th and my last pill of probiotic was on June 24th and haven't had any probiotics ever since (which was probably a mistake on my part). So during my "recovery" phase from June to around end of July i kept having only 1 to 2 max bowel movements a day, sometimes loose stool sometimes solid but feel some symptoms which my doctor says is probably just IBS, i kept asking her to refer me to a Gi but she kept brushing off my complains until 2 weeks ago i been having 1 - 2 loose stools everyday until yesterday, although no wet diarrhea, i felt the same symptoms i felt back in May before i knew i had c-diff (nausea, chills/tremors, frequent urination, lack of sleep, gas, bloating, abdominal pain/spasms, lethargic and weakness and extreme thirst) Finally, i emailed her the other day and told her my symptoms and requested to her to give me blood work and stool sample labs just to gove me a peace of mind and she did ended up requesting labds for me. And this morning i got the result from my stool sample and it says "C Difficile Toxin B Gene, Stool, PCR - Positive" that is the same result i got back in May. I'm still waiting for my blood work results and i sent another stool sample for stool culture besides the c diff test. Weird thing is, for the past two weeks of everyday loose stool, today was the first time that i had a more solid-ish stool.

Anyways, my question is even though i don't have the wet diarrhea 2+ a day and i still have an appetite to eat, is it possible to test positive for c diff and not actually have it? I'm waiting for my doctor to call me and to explain to me what our next plan of action is. I just don't want to go back to antibiotics again if its not necessary since i feel like it messed up my stomach/colon already not just the c-diff. By the way, my doctor suspected my c-diff was caused by taking Penicillin on May for strep throat even though i had a lot of wet diarrhea 5+ (not everyday bt sometimes every other day) for a couple of months leading up to my first c-diff diagnosis.

Machaon
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Re: Relapse after almost 2 months

Postby Machaon » Thu Aug 02, 2018 11:38 am

Everyone has differences in their diet, environment, metabolism, immune system and nervous system. That said, I feel that it is possible that the reactions to an invasion by a virus, or a bacteria or a fungus can be somewhat different between individuals. It's commonly documented that it takes three days of three or more WD to strongly suggest C-diff. I don't believe that is always true and that there can be varied reactions to a C-diff infection.

In my case, prior to getting a C-diff infection I was feeling pretty good. Then, C-diff took me too my knees, making me very weak, fatigued and very ill. After a few days of Vancomycin I was back to feeling pretty good again, although I was still very weak. A few days after finishing 10 days of Vancomycin, I started feeling very sickly again but I did not have WD. Well... before the C-diff, I felt pretty good. The fact that I was feeling very ill again meant, to me, that the C-diff was, once again, establishing a foothold in my body! I then asked for, and got, a prescription for 10 days of Dificid (fidaxomicin). It cured me and I have no side effects or lingering difficulties from the C-diff invasion, although it did take me six months to fully recover.

Regards, best of luck and health!

Bob
Last edited by Machaon on Sun Feb 03, 2019 10:40 am, edited 1 time in total.
Male 77 S.Florida

900 weight lifts 750 knee bends day

Since 1987 had CHF afib asthma

I inhale $6 Flonase nasal spray for asthma :)

Ex C-diff (4/19/17- 9/12/17) after 10 days dificid

Diet:6 meals ~1500 cals 2 eggs 2 steamed broccoli, apple, bagels

mattzkie
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Joined: Thu Jun 14, 2018 1:08 pm

Re: Relapse after almost 2 months

Postby mattzkie » Thu Aug 02, 2018 1:03 pm

@Bob

So do you think i should ask my Dr. for a prescription of Dificid once we get a chance to talk or maybe just another round of Vanco? The past 2 months there were days where I tend to have the urge to make a bowel movement but with my paranoia and anxiety i sometimes hold it in which i know is worse because i might be keeping in the c diff toxins, but anyways i dont know if i should ask my Dr again to refer me to a GI because she never listens to me whenever i request for that referal and now its finally true that my c diff came back again with the symptoms.


I have a 4 day weekend trip to Las Vegas next week from August 8th to the 12th for my 30th birthday celebration and i know i cant drink alcohol anymore but i want to start feeling a little better at least by then whether i start with antibiotics or not.

roy
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Re: Relapse after almost 2 months

Postby roy » Thu Aug 02, 2018 1:49 pm

Having c.diff in your gut is not a disease, having an overgrowth that causes D is!
Testing positive is only half the diagnosis as normal asymptomatic carriage is common.
To be honest if you can "hold it in" you probably dont need treating for c.diff.

mattzkie
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Joined: Thu Jun 14, 2018 1:08 pm

Re: Relapse after almost 2 months

Postby mattzkie » Thu Aug 02, 2018 1:59 pm

@roy

During my "recovery" period from June 11th until around July 30th i was able to "hold it in" because sometimes when i do try to go for the 2nd or 3rd time in a day, only gas seems to pass. I was also worried about having multiple bowel movements during the day because i tell myself that im in the recovery process and going multiple times everyday before my first c diff diagnosis traumatized me thats why i hold it in occasionally i never had an accident where sometimes i would check my underwear but its clear so yeah. Although i dont have any wet diarrhea whatsoever let alone multiple times a day, i do feel the other symptoms that i felt back then before my c diff diagnosis (nausea, frequent urination, fatigue, dry mouth, lethargic, chills/tremors, frequent stomach/abdomen pain, gurgling and movements, bloating and other
stuff)

By the way, I also deal with Generalized Anxiety Disorder, so this c diff problem has really been taking a toll on my mental health.

I was just prescribed by my doctor another round of 125mg 4x a day vancomycin for 14 days (the same dose and length i had when i had my first bout with cdiff in May). I don't know yet if i should pick it up and start taking it or wait to talk to her on the phone about other options

beth22
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Re: Relapse after almost 2 months

Postby beth22 » Thu Aug 02, 2018 10:22 pm

I have tested positive on PCR for over two years, but hospital lab follows all positive PCR tests up with EIA test to see if it is truly an active infection. I have tested negative for that. I would ask your doctor to let you do an EIA test before you start antibiotics. Of course, if your symptoms get worse, then you will have to treat. I would want to be sure I actually had an active case though.

mattzkie
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Re: Relapse after almost 2 months

Postby mattzkie » Fri Aug 03, 2018 7:17 am

@beth22

My doctor insists that i take the vancomycin and even told me to not take probiotics for now and just focus on the antibiotics because she said even though i dont have wet diarrhea, i still have the other symptoms of c diff.

Although i do feel like my doctor seems inexperience with c diff cases and its like she only reads a "book" about c diff.

this is what her exact words are when she emailed me:

"The recommendation with the cdiff still in the stool sample and you feeling symptoms still is to take the vancomycin. Don't take the probiotics, lets just stick with the vancomycin only for now."

I picked up the prescription (125mg vancomycin 4x a day for 14 days) yesterday but i haven't started taking any of them yet. I'll wait until my telephone appointment with my doctor later at 8:30am and see if she says something else.

Machaon
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Re: Relapse after almost 2 months

Postby Machaon » Fri Aug 03, 2018 10:22 am

@mattzkie

The symptoms that you are suffering: "nausea, frequent urination, fatigue, dry mouth, lethargic, chills/tremors, frequent stomach/abdomen pain, gurgling and movements, bloating and other stuff" are varied and serious. Could it be C-diff? Could it be C-diff and some other opportunistic infection? Could it be because of damage done to your intestines by C-diff during the months that you went without treatment?

You might consider taking the Vancomycin. It is not only "somewhat" effective against C-diff, it is also effective against other infections. If your feel better after a few days of taking Vancomycin then you know that it is effective against your infection(s). However, if after you discontinue the Vancomycin, your symptoms come back, you might consider dificid, which is highly effective against C-diff, but very expensive!

You might ask your doctor to research trials testing Vancomycin with and without taking the supplement Saccharomyces Boulardii, which is a yeast. In a C-diff treatment study, those NOT taking one gram (20 billion cells) of Saccharomyces Boulardii, with vancomycin, relapsed 50%. Those taking one gram (20 billion cells) Saccharomyces Boulardii with the vancomycin relapsed only 16.7%. Big difference!
Male 77 S.Florida

900 weight lifts 750 knee bends day

Since 1987 had CHF afib asthma

I inhale $6 Flonase nasal spray for asthma :)

Ex C-diff (4/19/17- 9/12/17) after 10 days dificid

Diet:6 meals ~1500 cals 2 eggs 2 steamed broccoli, apple, bagels

mattzkie
New User
Posts: 16
Joined: Thu Jun 14, 2018 1:08 pm

Re: Relapse after almost 2 months

Postby mattzkie » Fri Aug 03, 2018 10:51 am

@Machaon

Prior to being diagnosed for the first time with c diff in May, i noticed a lot of frequent urination, nausea in the morning/after eating/after BM, diarrhea (but i never went over 8+ times in a day, ever) and other symptoms. That's why this past past two weeks when i started feeling the frequent urination and other symptoms, i knew my c diff is back again and its not just a PI-IBS flare or anything. When i had my very first round of vanco back when i first tested positive for c diff (May 27th to June 11th), the change i noticed the most is that my frequent urination stopped and i was able to tolerate alot more "good/yummy food" without too much consequences afterwards. Then when i finished my 14 days prescription on June 11th, whatever symptoms i felt in my stomach and in other places i just assumed that its probably PI IBS and thats what my doctor said too so i just ignored them until last week when the frequent urination and nausea and more abdominal movement and pain came back (although still no wet diarrhea, i still only have BM once or twice max a day since June 11th until now but the stool is more loose everyday for the past 2 weeks).

Anyways, besides a cdiff stool sample that i submitted a couple days ago, i also submitted a stool culture for other bacterias like salmonella, ecoli, campylobacter, h.pylori and a complete blood panel and they all came back negative. So my doctor and i suspect that its definitely only c diff because its the only one that came up positive unless i have some underlying conditions that i didnt get tested on. "knock on wood" i hope not because c diff alone has made my life miserable physically, emotionally and psychologically and i already feel bad for my wife and kids because i notice that it affects them seeing me like this too. I will be getting a phone call from my doctor within the next hour so we'll see what she says.

beth22
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Re: Relapse after almost 2 months

Postby beth22 » Sat Aug 04, 2018 1:26 am

Do what your doctor feels is best. We are not medical professionals and can't give advice. I can only tell you what my own personal experience has been and what my own doctors have told me. You might ask if the testing facility followed up your positive PCR with an EIA to see if you are producing toxins. That is what most places do now. Other than that, you know your own body and you know how you feel. If your symptoms are worsening rather than improving, then taking the vancomycin as Bob mentioned, isn't unreasonable.

mattzkie
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Posts: 16
Joined: Thu Jun 14, 2018 1:08 pm

Re: Relapse after almost 2 months

Postby mattzkie » Sat Aug 04, 2018 3:39 am

@beth22

After speaking to my doctor yesterday, even though i don't have any wet diarrhea whatsoever for the past 2 months we both agreed for me to just start the 14-day course of 125mg vanco 4 times a day for now and if my symptoms dont improve, she will call in for an added taper prescription on the tail end of my 14-day course. She really advised me not to take any probiotics with vanco for now and one of her reason was that so it will be easier for us to pinpoint to the antibiotic or the cdiff if my symptoms worsen, I dont know if that makes sense?

Anyways I just took my 4th dose of my first full day of my 2nd round of vanco. 13 more days left and we'll see how it goes. I'm just hoping i don't regret starting vanco again, since i already started, there's no turning back now. So far, i don't see that much improvement of my symptoms yet but I am willing to wait for a couple more days of taking my vanco.
Last edited by mattzkie on Sat Aug 04, 2018 8:34 am, edited 1 time in total.

roy
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Re: Relapse after almost 2 months

Postby roy » Sat Aug 04, 2018 5:14 am

Insist she refers you to a knowlagable GI.
Dont just suggest it but INSIST!
We are not able to give medical advice but a Dr that prescribes one of the world's most important antibiotics (that's on the reserved list) to a patient who presents with vague symptoms would not be my choice of Dr.
Vanco kills around 20% of your normal gut flora species.
When you finish the course your flora has to recover and expect it to be many weeks or months before you reach a new normal.
During that time there can be a variety of inbalances in your gut that result in all sorts of vague gut symptoms.
If your symptoms do resolve while on vanco you should expect they might return when you finish, thats normal!
Your body has to recover from the treatment.

mattzkie
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Posts: 16
Joined: Thu Jun 14, 2018 1:08 pm

Re: Relapse after almost 2 months

Postby mattzkie » Sat Aug 04, 2018 8:50 am

@roy

I guess assertiveness is not my type of forte when it comes to trying to insist to my doctor that she refer me to a GI. Anyways, the reason why i agreed to take the vanco is because after my first round of vanco a couple months ago (June 11th), i was able to handle "PI-IBS" symptoms (nausea, stomach discomfort, etc.) until this past (July 22nd) when i felt the weakness/lethargic/fatigue, frequent urination, chills/tremors/feverish, loose stool, cdiff smell, lack of sleep all of which i experienced for also a couple of weeks prior to my first diagnosis of cdiff in May that is why i suspected that my c diff is back and i had her order me full panel bloodwork labs and stool sample for c diff and stool culture. Everyhing else came normal and negative except the c diff pcr which was positive.

By the way, 12 days after my last dose of vanco on June 11th, i asked to be tested for c diff to rule out the possibilities that it might've came back because i wasnt used to dealing with the "PI-IBS" symptoms yet at that time. Anyways, i tested negative from cdiff on June 25th.

beth22
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Re: Relapse after almost 2 months

Postby beth22 » Sat Aug 04, 2018 11:51 am

Give the vanco a few days to kick in. It doesn't always help right away. If you don't feel better on it, then your doctor will have to check to see what else is going on and hopefully will refer you to a GI for that.


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