Possible Relapse Again

[Roberta]

I got C Diff in late October after taking an antibiotic for a Sinus infection. It took a good month to diagnose as I never had D with the c diff. Just urgency to go, lots of M and generally unwell. So the c diff had a good hold of me before I finally was able to give a sample of just M and tested positive. Flagyl for 10 days, cleared the symptoms, felt good then the c diff came back a week later. Vanco for two weeks. Slowly cleared the symptoms, went back to normal. A week later in December, symptoms back again (never D just pain and M). Tested positive again and on Dec 29th was put on Vanco 4 x 250 per day for two weeks, them my GI tried a taper method of 3 x 250 per day for a week, 2 x 250 per day for a week, and finally 1 x 250 a day for a week. Normal stools, felt pretty good, no M or urgency. Finished my last Vanco last Tuesday. On the weekend I started to feel sickly again, burning in my rectum and heartburn. All symptoms I had before. Stools were normal. My stomach is making a ton of noises and tonight loose stool with M. The C diff smell seems to be coming back. I have been taking Florastor 2 x daily and spacing well apart from my Vanco and have been doing that for weeks. I have taken the Vanco exactly to the minute every day and have done everything I can possibly think of.

I have no reason to think the c diff is not coming back. I have read on this site we normally need to wait 14 days post meds to get a good test. I fear another week of waiting without meds will allow the c diff to go crazy again.

Why is it so difficult to get rid of this bacteria? I read Dificid is another medication used. I cannot imagine going back on Vanco again as it works fine while taking it, but the c diff comes back so quickly. I would have thought after several weeks of taking it that surely it would have killed the c diff.

I will reach out to my GI doctor tomorrow but he usually does not see me and simply calls in the meds to the pharmacy. How many times should we take weeks of Vanco to realize it's simply not doing the trick!

I am also suffering from terrible night sweats. I am menopausal and have assumed it's the menopause. Could it be the c diff. Has anyone experienced bad night sweats with this?

I'm in desperation mode. I believe a FMT is the next step and will suggest that to my GI doctor. My worry is if that fails what is next? There will be nothing left. I have read many assurances that c diff will eventually go with the treatments. Are there people who never get rid of it? I feel like I'm one of them or doing something very wrong. I'm different from most as I do not have the D, just lots of M with pain and nausea when it's at it's worse.

Any advice or thoughts I would like to hear them. Thank you

[Lisa33]

Hi Roberta - first and foremost, you will get rid of c diff. For some reason, it can take longer for some people. Given that you never get the D with an active infection, it is really hard to differentiate between recovery or relapse. It will take time for things to get back to some sort of normalcy, as your body has been through a lot. Mucus, gurgling and loose BMs are all common in recovery. Retesting too soon may give a false result, so many doctors do treat based on symptoms alone. If your GI dr believes that you are relapsing, I definitely would try Dificid next. There are many on this site that were cured by Dificid and Dificid tapers after vanco tapers failed. And then of course, there is the option of an FMT, which has the highest cure rate. Another positive of Dificid, is that it doesn't kill any good gut bacteria like vanco and flagyl.

I hope you aren't relapsing, and this is all part of healing. Either way, try to stay positive and know that there are many people on here who were cured after a long battle. You will get through this!
Lisa

[NanciT]

Hi Roberta

I am sorry you are going through all of this. I remember all too well wondering if I will ever get rid of CDIFF.
I went a similar route and after failing a 3 month Vanco taper I went on Dificid. I was on the 10 days, but did relapse and went on a DIficid taper. Many on this site have gone on the Dificd taper and done well. The FMT would have been my next step but thankfully the taper worked. I had actually seen the GI who would do the FMT if it failed and had my donor tested etc.
Hopefully your symptoms are the recovering period. If not and it is a relapse, just know
You will get rid of this, it can be frustrating. It sounds like you have a good GI on board so if you find it has returned both Dificid or the FMT have worked for many here. Recovery does take time.
Hoping you feel better soon
NanciT

[Roberta]

Hi Lisa/Nancy - thank you both for your words or encouragement. I really needed to hear this. I have just never seen something hang on like this. I will suggest the Dificid next. The Vanco was very easily tolerated so I hope the Dificid is the same. Maybe just maybe this is just part of the healing and there is no c diff. Fingers crossed.

Thank you again !

[beth22]

Roberta - My symptoms were like yours and I kept on relapsing too. Dificid was not out then, so I did the FMT. I did not start with D either, but lots of M and what you described above. However, I did not test positive right away. I think my first relapse was about 17 days later, but usually 25-30 days and I would test negative before that. So, yes, it is possible that you have it back, but sometimes you can just get it low grade and your body can fight it off. That is what my doctors have told me and they said to only take Pepto Bismol unless I got worse symptoms. If your pain comes back, that is different, but if it is just M, I would wait and tell your doctor to see what he thinks.

[getwellsoon]

I can so sympathize with you. I took Vanco on and off for months, did tapers and pulses etc. etc. Dificid finally cured me. I would definitely push for this and I sincerely hope this is your magic bullet, as it was mine. If I do ever get CDiff again I will go straight to Dificid and if that fails I will do the FMT but hopefully the cure or vaccine will be out by then and Cdiff will be a thing of the past. My best wishes that you soon get this figured out and get well.

[Roberta]

Thank you Beth and Carol. Overnight and this morning I am in lots of discomfort and passing large amounts of M. I called the GI doctor's office and spoke to his nurse. She will check with the doctor and come back to me. I have a standing requisition at the lab for a stool sample. Not sure if I should take a M sample in anyway, but don't want to test negative (due to residual Vanco). However, waiting another week to test may have my symptoms even worse. I would say 100% I know it's back. I'm asking the GI for Dificid or FMT and if he does not agree I will find another GI to evaluate this.

Carol - how did you tolerate Dificid? Is it as well tolerated as Vanco? I will never take Flagyl again in my life (that was the first round of treatment). Vanco for the last two rounds.

Thank you all again. This support forum really helps me feel less alone with this and all good info to learn from all of you.

[Roberta]

The GI doctor will not do a FMT until I have three positive tests for C diff. I have had three but one not under his care. He will also not put me on Dificid. He wants me to take Vanco again with a dosage of 4 x 500 mg per day. I have never head of this and beginning to think this GI doctor is a joke. Can someone suggest a GI doctor well versed in C diff in the Chicago area?

[roy]

How many times a day do you have M?
By M do you mean a clear (ish) jelly like discharge.

[Roberta]

I have M several times a day. Brownish and fishy smell

[Lisa33]

There is a list of Doctors who do FMT's by geographic area under "Doctors" under the Board Index. I'm sure these doctors are well versed in c-diff.

[roy]

How many is several?

M indicates an irritated gut but not always c.diff.
Many posters have used things other than antibiotics to clear up M.

Active C.diff typicaly caused profuse watery D and if thats not your main symptom its very wise to try to find out if theres something else causing you to be sick.

[beth22]

I would take in the sample. After you submit it, ask your doctor if you can take Pepto Bismol. If it is not c diff, or if it is low grade, that can help. If it is a full-blown infection, it won't help, but meanwhile you will have submitted the sample. I would look on the list to see if there is another doctor. If you get a copy of your first test result, wouldn't your doctor use it as part of the 3? The doctor who did my FMT just asked for copies of my tests.

[Roberta]

I took the sample in this morning to the hospital. The best came back positive. I do have three positive tests but the GI doctor said he needs to see where I have been treated three times. I have but one time by my GP and only two by the GI. I think this man is insane. I am frantically trying to find another GI doctor who specializes in C Diff and tried a couple but as a new patient there is a month or more wait. I do not have that luxury of time.

The GI wants to put me on 4 x 500 mg of Vanco per day. This to me sounds insane. I also take oral chemotherapy for a blood condition I have so taking Antibiotics for this long is insane.

I am desperate and in need of help. I have not idea what to do or where to turn.

[roy]

Chemo makes it very dificult to tell you what is normal treatment for c.diff.
Chemo is often what causes the gut flora to become weak and allow c.diff to take hold.
Best scenario is to stop the meds that are causing c.diff but thats not possible with a chemo course.
You MUST trust your GI on this one.
Keep c.diff under control with the GIs advice and then beat it after the chemos done.
I know thats not what you want to hear but it sounds like your Dr is knowlagable and doing all the right things.
FMT is a possibility a few weeks after the chemo but probably not now