Failed Flagyl. Vanco or natural antibiotics/probiotics now?

[Lorin]

I got epididymitis as the result of a vasectomy. Was given Cipro and Doxycycline. Adominal bloating/pain started a couple of weeks later. Eventually ended up in the ER last Wednesday. CT scan showed nothing. Stool culture went off for test. The ER DR didn't suspect C Diff, as I did not have crazy diarrhea, only bloating and pain. Got in with GI, who said that constipation/cramping is atypical, but not unheard of. He also said that the stool culture can have a 20% false negative rate. He prescribed flagyl. I took and immediately started feeling better. However, it came with pretty bad side effects. My urethra burned all the time (listed as a rare side effect) and my teeth became super sensitive. When I called to ask about it, he said (through an assistant - couldn't talk to the DR myself), "finish Flagyl. Then start Doxycycline." I questioned this: Doxycycline is what started this to begin with - why again? Is the urethra burning a side effect? Is the Doxycline supposed to treat a suspected UTI? (BTW - tested on Monday for UTI: negative). The assistant put me on hold and relayed my concern. I never got an answer. Instead, she came back on and said, "New plan. Stop Flagyl for 2-3 days and call us back if you're worse. At that time, we also may consider putting you on an anti-anxiety drug like Zoloft, if you're open to it" Really? I knew where this was coming room. When I first met with him, I told him that I had refused to fill the prescription the ER gave me for benthyl, as anxiety attacks were listed as a side effects (plus lot of other nasties), and I told him that I had already dealt with anxiety over my epididymitis. He asked me if I needed something for anxiety and I said no - it's not a big deal. I just breath through it. I've never had an issue with anxiety. It's just the fact that my testicles were swollen. Come on - that's anxiety provoking!

So now I'm two days out and the bloating cramping is back. Diarrhea is picking up a bit too - but at least I'm going now. I've barely eaten anything these last two days. I have spent over $150 on supplements at Whole Foods. Here is what I got:
Probiotic:
good broad-spectrum probiotoic (refrigerated and expensive)
Saccharomyces Boulardii

Natural Antibiotics:
Garlic extract
Oil of Oregano
Grapefruit seed extract
Olive leaf
Echinacea/Goldenseal
Caprylic Acid

Anti-inflamatory:
Tumeric
Marshmallow root

Intestinal repair:
L-Glutamine

For bloating:
Fennel

I know that advice from strangers should be secondary to advice from a medical professional. I know that most people will only advise based on their personal experience, which is probably Flagyl or Vancomycin. But I'm wondering if anyone can speak to trying an alternative route like the above as an alternative to conventional antibiotics. Everything is manageable right now. If the pain gets severe or I risk dehydration, you'd better believe I'll race for an antibiotic. However, I know that there is a cost to this in terms of further gut flora deconstruction and a higher chance of recurrence. There's also a risk in allowing the bacteria to remain in my gut and cause destruction.

I tried to get into a better GI doctor, but I need a referral and I don't have a GP. So I have a call in with this same GI DR. today. There's really only one thing I'd like him to do for me - prescribe Vancomycin that I can fill if I decide I want to. I don't understand his prescribing doxycline and it makes me question his competence. So we'll see . . .

Any feedback would be greatly appreciated.

[roy]

Do you mean the Dr prescribed Flagyl even though your c.diff test was negative and you did not have classic symptoms?

[Lorin]

Not negative, just unknown (out for test). He cited a 20% false negative on the c diff test as a reason not to wait for the results. Based on recent double-antibiotic use, I guess flagyl seemed prudent to him.

[Lisa33]

I am all for homeopathic remedies - however, it sounds like you are taking an awful lot. I think you should start off slow as too much can also add to GI issues. If you are having mild symptoms, I wouldn't say you necessarily need treating with meds even with a positive test. But this could be a slippery slope too since you are not possessing typical c-diff symptoms. I do feel that you should seek out a competent GI or ID doctor that is versed in c-diff to help in decision making on treatment. Normally, if you aren't having copious watery D, then treatment is usually not needed, but your case is a little different. I have no idea why you were prescribed doxy. To take an antibiotic while you may be fighting off c-diff is absolutely ridiculous. That will just bring on an active c-diff infection in my opinion.

Flagyl is a harsh med to take. Did you stop taking it or are you finishing out the cycle?

Lisa

[roy]

Have you asked for the test result?
ER normaly has it back within a couple of hours and you had the test a week ago!
5 years ago the tests were unreliable but todays tests are a lot more accurate.

[Lorin]

Thanks for your comments. I stopped Flagyl after four days due to side effects.

One of the tests came back instantly -neg. But the more comprehensive stool culture had to be sent off. I was told that the patient portal has a bit of a delay after the test come back (and they won't give me anything over the phone). So the test finally is showing up TODAY! Here is what it says:

RAM STAIN | NO WBC'S SEEN
ENTERIC PATHOGENS | NO E COLI O157:H7 ISOLATED BY CULT-REFER TO SHIGA
| TOXIN TEST
| NO SALMONELLA, SHIGELLA OR CAMPYLOBACTER
ENTERIC PATHOGENS | NO ENTERIC PATHOGENS RECOVERED AT 1 DAY
SHIGA TOXIN 1 | Negative
SHIGA TOXIN 2 | Negative

Shiga toxin not detected by immunoassay, suggesting that a
Shiga toxin-producing Escherichia coli such as E. coli
O157:H7 is not present.


Seems like good news, except this was a week ago and I still feel like crap. Furthermore, I don't see c. diff, specifically listed here, so maybe this didn't specifically test for it in this culture, even though I thought I was told that it would. IF, as Roy suggests, the false negative is not as prevalent, I wonder if it's possible that I still have it and the negative was not so much a failure of the test itself but infection at an early stage where colonization had not yet produced enough nasties to get a good read. At the time of test, symptoms had been present for 5 days. Not that I want to have c diff, I just want to know WHAT I have so that I can treat it. It seems fairly certain that whatever it is, it was caused by Cipro/Doxy antibiotic use. I'm in my 30s, thin and otherwise healthy. Before this, I never got sick.

[roy]

Its very unlikley to be c.diff.
The fast test you describe was probably for that.
Have you considered all this might be from the infection you got from the "snip"!
Although you say Mondays uti test was clear epididymitis and a UTI are closely related.

[Lorin]

Epididymitis is pretty much gone now. Procedure was way back on 3/31. And yes, UTI test on Monday was clear. (And that is mostly better now too. Still going with flagyl side effect)
This seems 100% intestinal and antibiotic-caused.

[AllisS]

I think the potpourri of supplements, so-called natural antibiotics, etc., is a bad idea, for reasons similar to what Lisa said. And your GI doctor sounds massively incompetent. Not a good idea to take Vanco, either, on the off-chance that you might have C. diff (which it sounds like you don't).

[Lorin]

GI doc at least seems to right about one thing:
"Clostridium difficile infections (CDI) commonly are diagnosed with commercial enzyme immunoassays (EIAs) that identify bacterial toxin, but the tests' sensitivity seldom exceeds 80%. No one has established yet whether this poor performance reflects differences among patients (Are milder infections, for instance, more likely to be missed by EIA?), reflects differences among organisms, or is simply a test characteristic. "

http://www.jwatch.org/jw201108180000001 ... lostridium

The test done a week ago reports:
11, 2016 Clostridium difficile Toxin B Gene
Negative
NEGATIVE

If they're only testing for one of the toxins, this seems like another reason why it might be a false negative? Don't know. Current GI called back and wants to do a colonoscopy. First available appointment is June 1st. Kind of relieved that I don't have to deliberate over whether or not to take another antibiotic. So now I will continue with the homeopathic meds. Feeling marginally better this afternoon than I was this morning. Hopefully something is starting to work. . .

[amyc]

I would ask the new GI to order you a pcr C diff test. Shouldn't be a problem to pick up a sample cup and drop it at the lab. You want to get it to the lab within an hour of producing the sample or put it in the fridge (ew, I never did this, just took it straight to the lab). They don't test for C diff in culture--it's notoriously hard to grow (thus the name C. difficile, not diff because difficult to treat, difficult to grow in culture). The quickie EIA tests are only about 75% reliable, but the PCR test is over 90%.

I would want the PCR results and a course of vancomycin if the PCR is positive instead of the scope.

Who did your vasectomy? If the GI doc doesn't want to order a C diff test you could ask your surgeon to order it for you. Or go to an urgent care and request the test. The urgent care right down the street from me uses a lab with the PCR test.

[NanciT]

I agree, if you are still having Diarrhea, get the PCR test done. The test you reported here, I did not see a PCR. It looks like an O&P was done for parasites, which is a good test to have but the PCR test is the one you want for CDIFF.
Find out what is going on first, that was a long list of supplements, I would not be adding these things until you know where you are.
NanciT

[georgina]

Agree with Aliss , you should get another's GI opinion , I would not want to overtreat if I were you.PCR tests are reliable but they are only testing for toxin B forming CDiff , you can ask to be tested trough EIA 3 days in a row to exclude a toxin A forming CDiff and also a GDH.

[roy]

The test that detects toxin B gene is the PCR test.
That one is considered very accurate.
It detects the DNA of toxin B, and if its not there you do not have c.diff thats causing a disease.
PCR is more likley to give a false positive as its so sensative that it picks up tiny traces of the toxin even several weeks after treatment or natural immunity has eradicated the bug.
The old EIA test is the one that misses 20% of infections.

[Ril]

Just to continue what Roy said, I have found that our local hospital lab uses the PCR test. If you get the specimen to them by a certain time they will fax the result to the dr the same day. That eliminates waiting 2 or 3 days for a result while the usual lab sends out and processes the specimen. The copay may be higher however.