Feeling lousy

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DaveMal
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Posts: 25
Joined: Sat Jun 27, 2020 1:24 pm

Feeling lousy

Postby DaveMal » Wed Jul 08, 2020 7:02 pm

I have another few more days to go on this round of metronidazole and I think I'm really beginning to feel it now. I'm so exhausted. Last couple days things haven't felt too good, but I haven't had D. A very unwell feeling and some burning that comes and goes. I suppose it's to be expected, but it just fuels my dread of the relapse I expect once I finish these meds.

I'm hoping I can get through relatively unscathed until I can make my GI appointment next week Thursday. I'm hoping to develop a contingency plan, but I don't really know what I can expect from the visit. i'm so discouraged by my recent experiences and my failure to obtain better treatment. Just feeling lost about how to navigate all this. I know my anxiety will climb as I approach the last pill. Maybe I'll get lucky. Here's hoping my gut and liver hold out.

Take care, all

David

Ali-Mar
Regular Contributor
Posts: 390
Joined: Sat Mar 21, 2020 4:17 pm

Re: Feeling lousy

Postby Ali-Mar » Wed Jul 08, 2020 8:23 pm

David, I am so sorry to hear you have C Diff and end up with a wrong doctor. I know how you feel. I have been there; it is not easy to fight C Diff and fight the side effect of Flagyl (Metro) at the same time. Unfortunately, there are so many bad doctors, and in my opinion, any dr prescribes Flagyl for C Diff shouldn' be allowed to practice medicine.

My GI Dr put me on Flagyl, a few months ago, It was an awful experience, I took it for eight days. I had all the symptoms you described here, I felt I was dying, couldn't focus, was getting dizzy, I was fatigued all time, so tired that I couldn't talk on the phone more than 5 mins, my back was hurting, and when I told the ex Dr my symptoms he said it was C Diff. I told him I didn't feel so bad before going on Flagyl. I had C Diff for five weeks undiagnosed and untreated, and it didn't feel nearly as bad as when I was on Flagyl. My primary doctor changed to Vanco, and all of the above symptoms cleared. In my option, they are side effects of Flagyl

Following is the link to the Infectious Disease Society of America rec for C Diff, 2017 update that states Flagyl is not recommended as the first line of treatment, and it should be used only where Vanco and Dificid are not available. I printed table 1 and faxed it to my ex Dr office so that he won't prescribe to anyone else.

https://academic.oup.com/cid/article/66/7/e1/4855916

See Table 1, printed, and take to your appointment. Table 1 is in the following section:

XXIX. What are the best treatments of an initial CDI episode to ensure the resolution of symptoms and sustained resolution 1 month after treatment?

I hope you will feel better soon
Last edited by Ali-Mar on Wed Jul 08, 2020 9:14 pm, edited 1 time in total.
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

DaveMal
New User
Posts: 25
Joined: Sat Jun 27, 2020 1:24 pm

Re: Feeling lousy

Postby DaveMal » Wed Jul 08, 2020 9:06 pm

Thank you for the support, Ali-Mar. I know you are struggling now, it's very kind of you to reply. I'm so disappointed that with the resources available in the 21st century, there is so much bad or obsolete information calling the shots regarding c. diff across the country. I understand every doctor can't be an expert in many things, but I would have thought there would be better systems of consultation or something. I don't know. I'm hoping that when I see the GI next week I'll be in better hands.

I have read many of your posts and have enjoyed reading and watching some of the resources you have linked, including the interesting Contagion discussion with the Gi's and ID's. Thank you for the additional info and reference to the table. I will refer to it.

Thank you again and I wish you well, hoping the docs come through for you speedily.

NS789
Contributor
Posts: 97
Joined: Thu Apr 16, 2020 12:14 pm

Re: Feeling lousy

Postby NS789 » Wed Jul 08, 2020 9:28 pm

Sorry to hear you're feeling unwell, Dave. I took Flagyl too before having to eventually try other options. It's definitely hard on your system.

I found that taking two extra strength Tylenol really helped me when I had that awful burning feeling.

I hope you get the help that you need. I know how frustrating it is when you feel like your doctors aren't taking things seriously enough. You really have to be an advocate for your own health sometimes.

Stay hopeful. While Flagyl isn't recommended as the first line of treatment anymore, it has still worked for some people. Perhaps you'll be one of the lucky ones! I'll keep my fingers crossed for you. Take care.
32 y/o female. Acquired C. diff in Feb. 2020. Prescribed Flagyl (10 days), then Vanco (10 days), then Dificid (10 days), then Dificid again (10 days), then a Vanco taper (5 wks), then a Dificid taper (2 mths). Relapse has occurred within 2 wks each time.

DaveMal
New User
Posts: 25
Joined: Sat Jun 27, 2020 1:24 pm

Re: Feeling lousy

Postby DaveMal » Thu Jul 09, 2020 10:04 am

Thank you, NS789. Once I finish this course, I'll have taken a cumulative 24 days of metronidazole since June 10. Though I'm aware the drug has been used as much (and more) in treatments, I'm concerned about the damage it's causing. At this point, however, I have only to see it through and see what happens unless something goes dramatically wrong. At least this should be the last time I'm on this stuff. I hope I'll respond well to Vanco or Dificid if I need to take more meds.

Thank you for the advice and positive thoughts :)

NanciT
Long Time Contributor
Posts: 2832
Joined: Thu Sep 18, 2014 12:01 pm

Re: Feeling lousy

Postby NanciT » Thu Jul 09, 2020 11:10 am

SO sorry you are going through this, it's terribly frustrating doctors are still giving out Flagyl!!! It was common when I first had CDIFF in 2014 and I was given it first. But now, there is no excuse. I would push for Dificid if you D has persisted, bring in your information ( I also printed it out a great deal) for my GI in 2014.
Sorry you continue to go through this but hopefully you will get the care you need when you see the GI.

Wishing you better days ahead

NanciT

DaveMal
New User
Posts: 25
Joined: Sat Jun 27, 2020 1:24 pm

Re: Feeling lousy

Postby DaveMal » Thu Jul 09, 2020 12:00 pm

Thank you,Nanci. I've also been jotting down some thoughts and questions which I'll begin to type up into a few concise notes. Hopefully there will be enough time to address my concerns. I dread the thought of being brushed off again after all this time.


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