Really Dr?!

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Whyme111
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Really Dr?!

Postby Whyme111 » Mon Aug 20, 2018 12:53 pm

Hi,
Bare with me... I'm really frustrated and don't feel heard, at least from my general practitioners office. I specifically asked for Dificid taper and I was told no. I was told it would only make me worse because I've relapsed on Flagyl and a Vanco taper. I was debating with the Dr with facts I know about the different treatments, yet because I'm not the Dr. I don't know as much or enough. Maybe that's true but to be so closed minded after I've heard of success stories with what I presented, is quite frustrating. I'm getting another test completed today plus a comprehensive stool analysis. I do have an appt with my GI in 1 week but living 1 week with these horrid symptoms scare me. I was originally treated with Flagyl by my GP office and that's not even recommended anymore, so it's no wonder I relapsed initially. I was then told a FMT would be the only solution and to prescribe another med would be outside protocol. I went on to ask if I could at least choose my own donor and I was told I don't think they allow that at the office I'm referring you to because the testing is very extensive. Wow is all I have to say right now. Thanks for listening /reading.

beth22
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Re: Really Dr?!

Postby beth22 » Mon Aug 20, 2018 2:12 pm

I would tell the doctor who told you that you could not do a Dificid taper that before you take the risk of doing an FMT with a donor that you don't know, you would like to try the Dificid. Ask him if he can guarantee that you won't pick up anything from the donor stool? Maybe that will get his attention.

Whyme111
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Re: Really Dr?!

Postby Whyme111 » Mon Aug 20, 2018 2:40 pm

I hear you and 100% agree. I have a strong feeling that my GI is going to go the route of meds but that's a week a way. Her parting words to me was, just keep taking your probiotics.
Sorry you guys but this is upsetting to say the least.

georgina
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Re: Really Dr?!

Postby georgina » Tue Aug 21, 2018 1:07 am

Sorry to hear that your doctors are so narrow minded. How can they think that Dificid will make you worse then Flagyl or Vanco?? It's true that for some people the Dificid has been harsh and gave them a few nasty side effects during the course but most of them got cured , especially taken in long courses it has been the magic bullet. Dificid is made to target only clostridia species , doesn't touch the good flora so during the course they have a chance to multiply and fill the gaps that Cdiff can occupy and unlike Vanco , it STOPS THE SPORING process , it won't allow Cidff to hide into the spore form when it feels the presence of the antibiotic.

Whyme111
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Re: Really Dr?!

Postby Whyme111 » Tue Aug 21, 2018 11:16 am

Thank you for the replies. They're the Dr., I'm the patient, therefore I don't know what I'm talking about... That's what I feel walking out of there anyway. I do have my GI appt in a week and I scheduled another appt with another GI in a bigger city that does FMT (just in case) and also works with the patient to choose their own donor. That appt is the first week of Sept. My current GI doesn't do the procedure, however he may disagree completely with my GP and put me on Dificid.... At this point, who knows though.
Is it even safe for a Dr. to allow a patient to walk out with no treatment whatsoever, knowing that the patient has C Diff and has relapsed? I'm so confused.

NanciT
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Re: Really Dr?!

Postby NanciT » Tue Aug 21, 2018 1:42 pm

I understand your frustration, if symptoms get bad go to the ER. You have mentioned you have a GI appt this week, maybe give them a call and explain your situation, see if they can squeeze you in earlier.
One thing I write about often on this site is we have to be our own patient advocate. Not all physicians know all about CDIFF, infact I had 4 GI's through my one year of treatment. I have never changed doctors in the middle of treatment and I have never been this sick. It was very frustrating. My symptoms were not typical, I had vomiting along with D (not much) but daily. This created confusion for the GI's I was seeing.

It sounds like you are all set to see someone and also with another back up. We have alot of information under CDI, read all about it and also the DIficid taper.

Wishing you the best with your new appointments

NanciT

Ril
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Re: Really Dr?!

Postby Ril » Tue Aug 21, 2018 9:28 pm

I totally agree with Nanci and you will find many of us saying the same about being your own advocate and going to another GI with more experience treating c diff. Unfortunately not all have the same amount of expertise and/or stay up to date so you may have more current knowledge. You are the “customer” and have the right to be heard and demand the best treatment.

Follow Nanci’s advice and good luck.
Rita

Lisa33
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Re: Really Dr?!

Postby Lisa33 » Thu Aug 23, 2018 11:52 am

That is really frustrating. Dificid tapers have worked for many on this site after vanco tapers failed. Dificid also doesn't destroy your good gut bacteria as the other treatments do. I would certainly want to try a Dificid taper before going to FMT as well. It's great that you have other appts set up already. I'm sure you will be in better hands with a GI doctor.

Whyme111
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Re: Really Dr?!

Postby Whyme111 » Thu Aug 23, 2018 1:22 pm

I appreciate all of your replies. It is quite frustrating and I'm basically just trying to find any natural remedy at this point because my GI hasn't even returned my "urgent" call from Monday. I do see him on the 28th and I do understand he has other patients, however I'm a patient too and this stuff is horrible. I feel they're not taking it very seriously at all. I will see what he says on the 28th and then follow through with the GI I'm planning to see in the bigger city as well.

roy
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Re: Really Dr?!

Postby roy » Thu Aug 23, 2018 5:13 pm

Have you got full on watery D?

Whyme111
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Re: Really Dr?!

Postby Whyme111 » Thu Aug 23, 2018 5:22 pm

I did starting on Sunday. At this point, it is definitely d but not always w. I have quite a bit of mucus and some blood. This sickness has a very strange smell too... So, I did submit another sample to the lab but I know those aren't always accurate since I ended my meds a week from last Sun. I also demanded a comprehensive stool analysis just to be thorough. I told the Dr. on Monday my symptoms and she just said she wasn't prescribing Dificid, that it's not protocol..?? She asked if I was ok with everything and I told her flat out... No, honestly I'm not...

georgina
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Re: Really Dr?!

Postby georgina » Fri Aug 24, 2018 12:50 am

F..k the protocol ! I'm SO SICK of doctors who don not wanna think outside the box , i don't wanna be mean but sometimes i just wish that they can deal for awhile with the "joys" of Cdiff so they can be able to understand the patient better.
The bloody mucousy D smells a lot like Cdiff to me , hopefully the results will be accurate so you can go on the next line of treatment. At least they are willing to give u FMT.

Whyme111
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Joined: Mon Jun 18, 2018 12:32 pm

Re: Really Dr?!

Postby Whyme111 » Fri Aug 24, 2018 10:51 am

Georgina, I so agree with you! Thank you for speaking what I feel exactly.


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