45 Days off Dificid - Multiple Negatives PCRs and Still Feeling Sick

[peace]

Hello,

I am a 34 year old female.

I just want to ask some questions.

I took Dificid and I still don't feel well. After 2 weeks I tested negative and my doctor wanted to do a scope - endoscopy and sigmoidoscopy. Both were normal save for slight swelling in my stomach. I had had a colonoscopy in the hospital in August after the initial food poisoning which set this all off. It was normal, save for a polyp.

I have been off Dificid and tested negative as recently as last week. My doctor has PCR machine in his office, so I can get results very quickly. I still felt sick after the Dificid but got progressively better for a few weeks, save for gas pain, which I never had before. 2 weeks ago, I was feeling almost back to normal 1-3 solid BMs a day. I could actually eat. Then on that Thursday I started to feel ill again, got some D. Friday, I had a ton of gas, but it was like trapped wind. Saturday, I was in so much pain, I walked into Urgent Care but there were people coughing all over the place, so I though the risk didn't outweigh the benefit and left. Sunday, I felt decent but tired. I have been extremely fatigued this whole time and spent most of my time in bed since March. But I was basically in bed from August to October from that food poisoning. Anyway, last Friday I was talking to my friend and got such terrible abdominal cramping I couldn't even remember her name. Saturday, it was one of my best friend's weddings and I thought I would be able to go, but I was so out of it I spent most of the day staring a wall. The pain started waking me up in the middle of night. I have very loose stool and 1-2 times explosive diarrhea. I feel like I'm getting worse. In some ways I feel worse than when I had an active infection. My cognitive function, normally sharp as a tack seems to be declining, I have zero attention span, I get severe pain in my lower abdomen, I have some hard to explain pain under my ribs that radiates into my back, mostly on the right side. The gurgles have gotten better, but I still feel like I'm so sick despite a negative test just last week. I had nausea last night and today. I shake (but I'm incredibly anxious anyway, I often shake when I'm nervous).

I guess my question is, have any of you taken Dificid, felt better but then felt worse after 2 weeks and still test negative on multiple PCRs? Is this just part of the healing process? BTW the past few days I'm only had 2 BMs a day but they're either loose or D. Please can anyone share some insight?
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Today I went to see a special parasite infectious disease doctor and he did an in office sigmoidoscopy. He said my rectum did not look normal and that it was red with M. I didn't even really have any M with an active infection and my sigmoidoscopy with my regular GI didn't even show signs of colitis. I get the parasite results tomorrow.

I'm so confused. I have no idea what's going on with my body. I'm scared, exhausted, lonely, depressed, anxious. How can I still be negative despite all of these symptoms?

Sometimes it feels like I'm losing my mind and I'm dissociating. That's never happened to me before. Staring at a wall is not something I've ever done before.

I'm also extremely depressed because in this time, I had to give up my dog. It's a long story, but she tested positive for C Diff but currently has no symptoms. The vets and GIs say she's not contagious, but I don't know how I got this in the first place. I had been off antibiotics and out of the hospital for 5 months. My guess is I got it from a colonic, or from my dog because my gut was so week. My dog has slept in bed with me every night for 7 years, and now I think I will have to give her away permamently because I'm too weak to take care of her and I think my gut is susceptible to microbes now.

I'm trapped in bed, in mental and physical pergatory. I have so many symptoms and they are all over the place.

Also, how do you deal with anxiety of a relapse? And if you didn't have classical symptoms, how do you even know that you relapsed? I can't get tested every day.

It feels like my life is over. Will I be more susceptible to this for the rest of my life?
I'm single and thoughts of like, what if a future partner is a carrier, creep into my mind. Thoughts of will I ever be able to have a dog again? Will I get my dog back? I saw my Mom today, and she showed my a video of her playing charades with friends and drinking wine, and I'm like, will I ever be able to be that carefree again? I've basically been alone in bed for 9 months on and off and I'm at my wits end. I know anxiety and depression weaken the immune system so that cycle of fear is not helping and that creates even more fear.

Thank you.

[roy]

Thanks for posting the short version, we encourage posts to be as short and concise as possible.
Long posts rarely get read properly and even this one is difficult to understand.
One thing that stands out is the PCR machine in your Drs office.
I have never heard of such a machine existing.
C.diff tests are a specialist subject and Drs dont do them in their office
I might be wrong but it's not possible that your Drs giving Instant PCR results
How do you know your dog has c.diff?
Has a vet tested for it and has it been treated.

Did your Dr prescribe dificid as your first c.diff med?

[peace]

I will edit to be more concise.

My doctor is an GI/ID DR and does have a PCR machine called BioFire Film Arrray in his office. Here is the link to the machine. https://www.google.com/search?client=sa ... 8&oe=UTF-8. You get the results approximately within an hour-2.

Yes, my doctor prescribed Dificid as a first line of defense. He almost always does that and has had just about a 100% success rate with it. The nurse who works at his office just had it, took Dificid as her first line of defense and was fine totally back to normal within a week or two.

Re: My sweet dog. I was in the hospital for the initial food poisoning in August for 3 days. A few days after I got out, my dog got severe D. I took her to her vet, and asked if they could run a test to see if she had what I had. They couldn't, so I took her stool to my ID/GI whose machine works for animals as well. She tested positive for E. Coli but he and vet agreed that many dogs just harbor that and it's not what was making her sick. She was on Metronizodole for a few days before my vet told me to stop it (I still don't know why). She kept have D so I took her stool back to my ID/GI Dr and this time she tested positive for C Diff. We did not treat it because it came and went. Then in November it came back full force and we tried her on Metronnidozole but that didn't work, so we put her on Tylan powder which finally did work. In that time, my vet ran a doggie PCR which showed clostridium perfringens NOT C diff. I was so confused by the two different results.

November we were both starting to feel better. But my mid February she started having horrible D again and this time, she had pancreatitis. She was in the animal hospital and did a course of Metronidozole. In March, when I find out I had C Diff, I didn't know if it came from her or not so I gave her to my dog walker temporarily. I was too sick to care for her and knew my gut was weak. I had them test her stool again at the animal hospital and it was negative for C Diff but positive for some other bacteria.

Then when I finished my Dificid I wanted to take her back, so just as a precaution I took her stool, now normal, back to my ID/GI and again she tested positive for C Diff. So now, I guess she is an asymoptomatic carrier..? The vets don't seem concerned about me taking her back, but they also haven't been sick in bed for the past 9 months.

I feel like I have really lost my mind over this whole thing and don't have a good grip on reality. I feel like I'm still fighting something, but what I don't know.

[peace]

Also, it's hard for me to fully trust PCRs because my first test at Urgent Care showed positive A and B toxins but negative GDH, so they ran a PCR which was negative. They wanted to re-run one the next day to the sure and sure enough it was positive, so I wonder how sensitive PCR machines are, or if there was an error in the initial testing.

[amyc]

First, never, never get another colonic. There is never any reason to get one of those, and you have no idea how they clean their equipment. Alt med clinics aren't regulated the same way as hospitals. My guess would be you got whatever you have from a colonic.

You could have C perfringens colitis instead of C diff colitis. C diff PCR won't catch C perfringens. You could have a weird parasite. Where did you get the first infection that put you in the hospital?

Are your doctors affiliated with a big hospital? If not, I recommend you find a reputable GI group who is to find out what's really going on.

[peace]

I will never get another colonic. In fact, I didn't even go in for it initially but was upsold. It was in fancy doctor's office and the place was really clean. They use all disposable equipment. In fact, I inquired with the Taymount Clinic about FMT and they give colonics before the treatment. I told them that is how I think I got it in the first place and the tech said she's never heard of such a thing and she works in clinic for FMT. I also had a lengthy talk with the woman who performed my colonic who explained the whole system to me and how it has 3 ways to clean. She says she has performed tens of thousands of colonics and never has someone gotten sick. I also wonder if it didn't just wipe out all my good flora. I still think I got it from there, but I can't be 100% sure.

My dog had C. Perfrigens, but that runs its course and it's out of you, right? It doesn't linger like C diff can, right? I definitely had C. Diff as one confirmed by 2 PCRs.

I ate oysters, obviously never doing that again. I didn't get sick until 2 days later, but the PCR showed Vibrio and E. Coli and you really only get Vibrio from eating oysters. I know it doesn't do any good, but I keep beating myself up over eating raw shellfish and getting a colonic. Two things people do all the time with no ill consequences.

I get my parasite results tomorrow.

My doctor is affiliated with a good and major hospital in NYC.

[roy]

I am still surprised a Dr has the test equipment in his office it's a very specialised piece of laboratory kit.
Also I am not sure if it's PCR as the test results identify toxin A and B and PCR detects toxin B genes only.


I did find this
, laboratories may choose not to utilize the FilmArray GI Panel at all for routine C. difficile testing due to the well-defined clinical situations that warrant C. difficile testing, in conjunction with the increased cost of multiplex molecular assays and a lack of consensus related to the most appropriate C. difficile testing methodology with respect to the outcome of infection (i.e., molecular detection of the toxin genes versus detection of the toxin) (61–63).

[NanciT]

I have not heard of any "in house" PCR testing. I see your post but I am not familiar with it. I have also never heard of a GI/ID going directly to Dificid.

You don't mention how long you were on Dificid. I would honestly get another opinion. I changed GI's through this process.

I had a lot of Post IBS after 3 months of a long Pulse taper of DIficid but that was after Months on Vanco. It has taken me a very long time to recover from all that medication.

Hope you feel better soon
NanciT

[peace]

Hi Nancit,

I did the standard 10 day course 2 x a day of Dificid. My internist, a secondary GI doctor, and another doctor I have been to in the past all agreed on Dificid. I think most people don't do Dificid first because of the cost (that's what the aftercare people at urgent care told me), however, if you go to their website you can get a huge coupon and it only costs about $200. I actually went to 2 GIs for this and am switching to the doctor who gave me the second opinion.

Hi Roy,

It is a PCR test. It detects both Toxins A and B. It sounds crazy, but my doctor invented the test. This his specialty. I am switching though because he's very big into scopes and now wants to do a colonoscopy and I just don't want to to put my body through anything so invasive right now. The sigmoidoscopy and endoscopy were enough for the time being. I don't want to disrupt my gut flora anymore. He also spends 2 minutes with you and you hardly get to ask him any questions.

I just started EnterGam today so I'll see how I do. Anxious about getting the parasite results tomorrow, but it's better to know than not know, I guess.

[NanciT]

Peace

I took a look at that machine for PCR. It lists several and one is GI. Not clear if this is some type of GI panel they do. The CDIFF PCR test labs have is specific for that test and not a panel. Sounds different, something I have not heard of and it looks very recent. Not sure if your GI/ID is involved with the company that manufactures the equipment.
If it were me, I would see another GI. There are many who take Dificid for 10 days and move on and do great. There are also many like myself who are on it longer and have Post IBS.
As far as your results, is it the same GI/ID running those tests for Parasite or did you do the typical O&Ps ? Those would be 3 bottles with a solution collected over 3 days which is typical.
NanciT

[cdiffrun]

Are your current symptoms similar to your previous C diff experiences?

[peace]

He runs the parasites and I've had many other Ova and Parasite tests, with the standard procedure. I went to a controversial parasite doctor yesterday who checks the samples himself and does sigmoid mucosal scrapings. He helped me when I came back sick from Thailand years ago.

I did go to another doctor and did a stool test that they sent out and am awaiting those results.

My current symptoms are not really that similar to C Diff but with C Diff my symptoms were always changing and they still are. I didn't have much pain with C Diff until the end. In fact, there were nights when I took enough bentonite clay and went out dancing. The further it progressed that was not possible as I was having like 10 BMs a day, even with bentonite clay and starting to run a feverb and practically fainted. But that was only after nearly 3 months of being undiagnosed.

Now I have severe cramping that wakes me up in the middle of the night, like right now (though not as bad as 2 nights ago). I've been having less BMs but they are still very loose to D when I have them. Yesterday I only went once. I have other weird, sometimes debilitating, pains, lethargy, depression, weakness. I actually just had my first solid BM in days, but it's not normal for me to be woken from sleep at 3am to go to the bathroom with cramping, like just happened. Maybe the EnterGam made it solid..? I took it for the first time at 6pm.

This whole thing is super confusing. Thank you for your help.

[amyc]

Sorry you got sick from raw oysters. They are really a dangerous food, even though most people who eat them never get vibrio. I've never had one and never will. Dangerous, and they look disgusting to me. I guess I am lucky.

The last thing you want to do when you have a diarrheal disease is take a bunch of clay to stop yourself up. The diseases are caused by toxins produced by the bacteria. The toxins destroy intestinal cells. Taking clay just keeps the toxins inside your colon so they can do more damage. C diff is contagious, so it's not a great idea to go out clubbing when you have it.

Bentonite clay is dirt. Dirt contains clostridium spores. I wouldn't take bentonite clay internally unless it was subject to irradiation to kill spores.

[peace]

I'm very aware how contagious it is - the hospital drilled that into my head when I was there. I was quarantined before I tested negative in August. When I went out dancing I had no idea I had it. My point in saying that was I didn't have classical symptoms and it took 2 1/2 months to feel so bad consistently that I had to stop going out and living a normal life. I felt bad on and off. Bentonite clay pulls toxins from the body, just like activated charcoal. It doesn't just stop you up. Again, when I was doing that, I didn't know I had it. I've used bentonite for years when I have minor GI upset and never had a problem.

Yes, I'm also very aware how dangerous raw food is now. I knew oysters could be dangerous but the diseases people get from there are so rare. Out of everyone I know who eats oysters regularly, no one has ever gotten sick aside from me. I had only eaten them a few times.

Yes, bentonite clay is from the earth, and I guess in theory could contain spores, but I would assume by the time it gets from the earth to me, it's been packaged for a long time and they wouldn't survive.

[roy]

On surfaces spores can survive 2 years, in soil the spores might survive indefinatly!
Thank goodness your seeing another Dr.
You have been told a lot of misinformation about c.diff
Quarantine is relaxed after 2 days of formed stool not because of tests.
Start fresh with your new Dr
You have mentioned many things that could be the cause of your sickness, C.diff is only one if them.
If a Dr mentions toxin A in the same sentence as PCR test ask if an EIA test has been done.
PCR does not detect toxin A.