Relapse

Veteran support board users and new posters - use this forum to talk about whatever you want. Topics may be C. diff. related but are not required to be. Post here about posters' birthdays, holiday greetings, vacation plans, etc. If it doesn't fit in another forum, put it here.
Kuro
Contributor
Posts: 90
Joined: Thu Mar 29, 2018 5:12 pm

Relapse

Postby Kuro » Tue Jul 10, 2018 5:21 pm

So, it's officially my first relapse. I think? I guess so. Must've started somewhere between the end of April and now. I had a negative test at the ER in April, so I can't imagine it never went away.

Unfortunately, my testing came back positive today. Toxins A & B were initially negative, but it was ruled indeterminate and sent for toxigenic testing. That came back positive. It does explain some of my "nuisance" issues recently.

The GI is not sure that it's a true positive because of the lack (knock wood) of D. He prescribed another round of Vanco. I have said no, my family's gone through four months of hell that I thought was post-Vanco recovery. I have no idea how this could've returned when I don't even leave my thoroughly bleached and hand washed home due to my disability, so I must be vulnerable and want to hit it hard. I asked for a Dificid taper, and I'd apply to the assistance program to see if I could get it.

If I can't get the assistance program, I probably won't be able to get Dificid period (it's pending approval from Medicaid for one course; good luck with that getting through), though the GI only prescribed one round to *follow* the Vanco. I'm not sure he understands that this defeats my purpose. A Dificid taper would reduce the loss of gut flora and be more targeted at the CDIFF. Doing it after two weeks of Vanco treatment is like hitting a gut we've already carpet bombed. I modeled my idea toward what NikaNik seemed to have recovered with.

Ugh. I can't believe it happened, nor do I know whether to start the Vanco today or not.

roy
Long Time Contributor
Posts: 3310
Joined: Sat Aug 02, 2014 1:05 am

Re: Relapse

Postby roy » Tue Jul 10, 2018 7:48 pm

I will repeat a quote from a c.diff expert.
"If someone tests positive for c.diff but does not have diarrhea then they dont have c.diff!".

I think your confusing your test results.
They do not do the toxin test first.
If GDH or PCR test is positive they follow it with a toxin test.
If toxin test (A&B) is negative then you do not have c.diff (that needs treating).

If your test says negative for toxins then treating nuisance symptoms with powerful antibiotics, is, in my non medical opinion, utter madness!

Kuro
Contributor
Posts: 90
Joined: Thu Mar 29, 2018 5:12 pm

Re: Relapse

Postby Kuro » Tue Jul 10, 2018 8:14 pm

Roy:

The feedback says as follows...

CLOSTRIDIUM DIFFICILE TOXIN/GDH W/REFL TO PCR

MICRO NUMBER: 81767378
TEST STATUS: FINAL
SPECIMEN SOURCE: STOOL
SPECIMEN QUALITY: ADEQUATE
GDH ANTIGEN: Detected
TOXIN A AND B: Not Detected
COMMENT: Indeterminate. Specimen forwarded for
toxigenic C. difficile PCR testing.


The commented test says as follows:

The stool sample is POSITIVE for toxigenic C. difficile.
This result is suggestive of C. difficile infection
(CDI) if accompanied by appropriate clinical symptoms.

Simultaneous testing does not identify a genetic marker
of the hypervirulent 027/NAP1/BI strain of toxigenic
C. difficile.

This test is for use only with liquid or soft stools;
performance characteristics of other clinical specimen
types have not been established.

This assay was performed by Cepheid GeneXpert(R) PCR.
The performance characteristics of this assay have
been determined by Quest Diagnostics. Performance
characteristics refer to the analytical performance
of the test.


He is proposing treatment on the basis that I may not have profuse watery D (I was one of those who did not, there are others like me here), but I do have other symptoms ongoing. Cramps and mild burning around the colon, mild rectal burning, difficulty adding to diet four months out, bloating, among other things. I do not know what to do or what to take or not take now; I worry that I am sitting here and letting my gut get torn apart.

beth22
Long Time Contributor
Posts: 9456
Joined: Tue Apr 07, 2009 2:23 pm

Re: Relapse

Postby beth22 » Wed Jul 11, 2018 1:39 am

I had your same result and my doctors considered that a negative test. They told me not to treat. Maybe something like EnteraGam would benefit. I still test like that after two years and lately I have been C.

roy
Long Time Contributor
Posts: 3310
Joined: Sat Aug 02, 2014 1:05 am

Re: Relapse

Postby roy » Wed Jul 11, 2018 3:12 am

THE MOST IMPORTANT LINES IN THAT TEST RESULT

" if accompanied by appropriate clinical symptoms"

"This test is for use only with liquid or soft stools;"

Kuro
Contributor
Posts: 90
Joined: Thu Mar 29, 2018 5:12 pm

Re: Relapse

Postby Kuro » Wed Jul 11, 2018 3:29 am

It was used with a soft stool, so that ticks one off of the list.

As for the other, it comes down to the GI's assessment of the symptoms, and he believes mine are related and have been ongoing for long enough to warrant treatment. I've sent him a message back questioning some of these decisions, so we'll see what follows.

If he DOES have a persuasive argument for my taking medication (and the symptoms lingering are persuasively unpleasant, I can't deny), I'd want to take the Dificid first, assuming I can get it at all. Otherwise, taking the Vanco first defeats the entire purpose, which is to take the drug which destroys the lesser amount of good flora.

Kuro
Contributor
Posts: 90
Joined: Thu Mar 29, 2018 5:12 pm

Re: Relapse

Postby Kuro » Sat Jul 14, 2018 5:18 pm

Just to update, my GI went out of town shortly after deciding the above. I decided to be the one to contest the plan, because if Quest had tested in the opposite order (as is hospital policy now), I would have had a negative test. Probably why I got a negative at the ER back in April, as well.

I did get the paperwork started to get Dificid if needed. I'm not going to spend time trying the different kinds of Vanco tailoring.

That said, I also convinced the PA handling the GI's inbox to look at my case and the test with a different set of eyes. She and another physician did so, and I provided some helpful info people here PM'd me. They decided to tell me not to treat unless WD starts, and just take two Florastor (I can't tolerate Florastor, so my current probiotic will have to do). No antibiotics. So, they basically ruled a negative unless I get clearly symptomatic.

Good lesson in not giving up too quickly and advocating for yourself when in doubt, I guess. If patient assistance gets the Dificid, I will feel better just having it around. However, I'm glad I did not have to hit the reset button on my recovery, since I'm 4 months out as of the 12th.


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