Frustrations with a Doctor and CDI.

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ladybmiller
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Frustrations with a Doctor and CDI.

Postby ladybmiller » Tue Nov 25, 2014 9:18 am

Hello,

I'm a 33 year old female, who generally, was a healthy, happy individual... That is until C Diff entered my life. It started out as a sinus infection and in trying to find some type of relief, I gave in to an urgent care clinic with a doctor who was medication happy. He treated me with a 10 day supply of Augmentin leaving me with the hope that if I ate yogurt with the medication, I would be just fine. I did as he suggested. 7 days into this medication began my downward spiral. I thought maybe if I ate my way through several tubs (gallons) of greek yogurt, I would be just fine. I was wrong.

7 days of stomach issues, I gave up and went back to the same doctor. I did some online research prior to my visit and found vast amounts of information on "C-diff" (or as I like to call it, terminator). I then began to realize all of the symptoms seemed too familiar. The doctor basically said all of the good bacteria in my gut was gone. When I asked him what that was called, he acted like he couldn't remember the name. It felt like pulling teeth to get it out of him. He finally admitted that I have C-Diff. Without any testing for a true diagnosis, he gave me a 7 day script of Flagyl. He also pushed a prescription for Imodium; an over-the-counter medication. Not even knowing the dangers of taking Imodium with C-Diff, I kindly declined. He prescribed the medication anyways.

To make a long story short, I am on my third round of Flagyl. I have been treated for UTI along with (and I apologize in advance) several yeast infections. I've lost track of the amount of doctor's visits made and prescriptions filled. Thankfully, I am with my Primary Care Doctor who is working with me in fighting this. I will be on this round of medication for nearly a month as my doctor is working on a "tapering off" approach. If this doesn't work, it looks like the next step will be a hospital visit.

My life has changed drastically since "terminator" entered my life. I'm weak, depressed, and scared. I have family members saying I should seek legal advice, suing the socks off that clinic. Honestly, I feel that if the doctor had forewarned me of the dangers involved in this medication, I would have declined. Suffering through a sinus infection would be a walk in the park compared to this.

So for now, I am just praying and hoping my body can fight this. I have also made a formal complaint to this clinic with the CEO. I am not sure how far it will go, but maybe it will help future patients from having to suffer.

Good luck to everyone for a happy, healthy future.

beth22
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Re: Frustrations with a Doctor and CDI.

Postby beth22 » Tue Nov 25, 2014 12:49 pm

STANDARD INTRODUCTION:
Welcome to the site. Read the first forum “All Users Read This First” and subtopics “Site History” and “Information and Guidelines for Posting to our Discussion Boards.” (Note limits on posting.) This will guide you in using the site and answer some of your questions. Read Dr. Borody's articles. Also see the topics under “CDI” – particularly Recent CDC Report, The C. diff. Bible, Tests, Antibiotics, Hygiene, and Nutrition.

“Doctors” lists physicians our posters recommended and also a list of C. diff. specialists throughout the world with contact information. (Many perform FMT's.) See the new forum “FMT’s and FE’s” or “Media Reports” for new information on C. diff.

The majority of patients (about 70%) recover with one to two rounds of Flagyl or Vancocin. An unfortunate small percentage doesn’t and can suffer for months. Most recover unless there are factors such as advanced age or other severe health problems. New treatments include FMT's, which have a high cure rate, and Dificid. Other drugs and treatments are in the pipeline, and there is increased recognition of C. diff. You can help by educating your family, friends, neighbors, and co-workers. Help us make others aware of C. difficle – which will lead to further advances in treating and/or preventing the infection. If antibiotics contributed to your C. diff, be careful about taking them again. Some people tolerate them; some develop C. diff again. Don’t take medications for C. diff. unless you are tested.

If a medication contributed to your case, please fill out an Adverse Event Report online at: http://www.fda.gov/Safety/MedWatch/default.htm. Under "Resources for You," in left-hand column, click on "Report a Serious Medical Product Problem Online." (Allison provided this information.)

The best protection for you and others is thorough hand washing and good hygiene. (See Dr. Borody’s articles and “CDI.”) For more information, see other support groups on Facebook, including http://www.peggyfoundation.org, the Mayo Clinic and Web MD web sites, and “The FMT Foundation” under “Links” on the homepage.

This is a support site not a medical site. We can’t give you medical advice but can tell you what worked for us and offer support. No one will understand what you are going through except someone who has/had this unpredictable disease. All of our moderators and frequent posters had/have C. diff. (or a loved one with it) and know how physically, emotionally, and financially disabling it can be.

Again, welcome. Remember, the odds are in your favor. (End of letter.)

You can seek legal counsel, but it is doubtful that you will get very far with it, but it also depends what state you live in. For now, I would concentrate on getting well. Usually after a couple of rounds of Flagyl, doctors will prescribe vancomycin or even Dificid. Are you allergic to vancomycin? Also, as you probably already know, there is FMT available. There is a list here of doctors who do them, most of them via colonoscopy. That is what finally worked for me. You still have some options left, but I would ask the doctor about switching you to vancomycin if you relapse again. It generally has fewer side effects as well.

seekingcure
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Re: Frustrations with a Doctor and CDI.

Postby seekingcure » Tue Nov 25, 2014 1:31 pm

I agree with Beth. It's time to ask for a different medication for c-diff, either Dificid or Vancomycin. C-diff is becoming more resistant to Flagyl and after two rounds, I would think that would be enough of a trial on that particular medication. It does also have awful side effects. Flagyl gave me thrush, but I didn't have that problem with Vancomycin. I was also suffering with recurrent UTI's during my bout with c-diff. When the good bacteria in your gut is wiped out, it is also compromised in the genitourinary system, hence the problems with UTI's and vaginal yeast infections. It took a long time for me to overcome the vicious cycle that I was in. I was on a very long course of liquid Vancomycin and also took many probiotics during that time, including VSL-3 and s. boulardii. I also discovered two probiotics that are specifically for the genitourinary tract system, Primadophilius Optima Women's and Renew life Vaginal Support. You might find some of these probiotics to be helpful, but start slowly if you decide to try them. Sometimes probiotics can cause GI symptoms.
Bea

roy
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Re: Frustrations with a Doctor and CDI.

Postby roy » Wed Nov 26, 2014 5:31 am

You say your Dr treated you without testing.
Have you now been tested and have a positive result?
ONLY 20% of antibiotic D is caused by c.diff!
A Dr can't just guess a diagnosis a test must confirm it.
7 days of Flagyl is not the correct dose against c.diff, I bet he only gave you 250mg instead of 500mg pills
Your Dr does not know c.diff or how to treat it.
No Dr should prescribe 3 courses of Flagyl, and no Dr should continue to treat without confirming the initial diagnosis

Lisa33
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Re: Frustrations with a Doctor and CDI.

Postby Lisa33 » Wed Nov 26, 2014 9:52 am

I totally understand what you are going through. My story started off at an urgent care as well. I was prescribed omnicef for a sinus infection, which I have never taken before. Two weeks later, I had c-diff. My first round of treatment was a 10 day course of Flagyl. I relapsed after 3 wks of finishing the flagyl. I was then started on a 14 day round of flagyl, but after day 2, the side effects were unbearable. I was nauseaus 24/7, couldn't eat a thing, and walking around in this mental fogginess. I don't know why this didn't happen to me the first round. After 9 days of hell, I was switched to vanco. Thanks to the people on this board, they suggested for me to push for Vanco. Vanco was a God-sent for me! I had zero side effects and my appetite came back. I lost 15 lbs from this whole ordeal and trying to gain some back. The urgency and d pretty much stopped for me rather quickly after starting the meds. I am off the Vanco only 1 wk now and keeping my fingers crossed. My stools are nowhere near normal, but as everyone says, the gut takes a long time to heal after c-diff. I will take a stool test in one more week per the instructions of my infectious disease dr. You should retest 14 days after finishing the meds to get a true reading. I am seeing a gastro dr and an infectious disease dr because I wanted two different opinions. They were for the most part in sync except for the timing of the stool testing post meds. I suggest you see a gastro or infectious disease dr as they seem to be better equipped for dealing with c-diff than an urgent care or even regular GP's.

You are not alone though. I know how you feel. C-diff has taken over my life for the past 3 months, and it really takes a toll on your physical and mental states. You just want your life back, and get rid of this thing once and for all. I don't know if I'm cured yet, but I'm trying to focus on the fact that I am feeling better. As soon as the flagyl was out of my system and the Vanco took over, I felt better. Maybe Vanco or dificid will be better for you too!

I hope you feel better soon, and I'm praying for all of us to be free of this "terminator" once and for all! I'm not a very patient person, so the wait and see approach is very frustrating, but it's part of this godforsaken illness!

Lisa


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