Hello again from AZ

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JoElizabeth
Regular Contributor
Posts: 306
Joined: Tue Sep 20, 2011 11:46 pm

Hello again from AZ

Postby JoElizabeth » Wed Jul 27, 2022 12:59 pm

Hi. I’m Jo and I had cdiff 11! years ago and this site saved me at the time. I believe I was one of the first people here to have been put into remission using Dificid. It had just come to market when I got cdiff after a Cipro/Flagyl combo for diverticulitis.

I see a couple of the same people here from all those years ago! Oh how we had hoped for a cure, right? Hi, Nancy, hi Bobbie, hi Roy, hi Beth!

Anyway, I was found to be immunodeficient after cdiff and am on IgG for that. I’ve suffered a few very scary infections and had to take abx a few times (IV Vanco, Z-pak) but took Vanco with them and did not relapse.

I’m now on Doxy for cellulitis and thought I come back here to see of any new developments in the cdiff world.

So hello from sunny AZ. Still praying daily for a cure!

beth22
Long Time Contributor
Posts: 10852
Joined: Tue Apr 07, 2009 2:23 pm

Re: Hello again from AZ

Postby beth22 » Wed Jul 27, 2022 9:07 pm

Hi JoElizabeth - Of course I remember you! I'm glad that you are doing okay. There really have not been too many new developments and no cure yet. But, I will tell you that my mom was on doxy for a month for some skin infection and she also had c diff several times before that and she did not relapse. She did not take vanco with it or anything, but doxy is one of the safer antibiotics as you know, although any of them can potentially cause c difficile. Wishing you well with it and hope it helps the cellulitis!

GtrGrl
Regular Contributor
Posts: 204
Joined: Tue May 04, 2021 4:43 am

Re: Hello again from AZ

Postby GtrGrl » Thu Jul 28, 2022 5:08 am

Hi Jo,

Would you mind saying a bit more about your immunodeficiency? I have had low lymphocytes ever since C Diff. Do your docs think it actually caused the immune issues in you? I know so much of our immune system is in our gut so that would make sense but I need to try and get them to do something about it. What do you mean by being ‘on IgG’?

Hoping no relapse for you.

Thanks.

NanciT
Long Time Contributor
Posts: 3035
Joined: Thu Sep 18, 2014 12:01 pm

Re: Hello again from AZ

Postby NanciT » Thu Jul 28, 2022 1:34 pm

Hi there

So good to hear you did not relapse. I actually did while on Vanco in the hospital in 2020. Now my ID will always put me on Dificid if I need antibiotics. I also seemed to develop an allergy to Vanco while in the hospital so there no other options.

Glad the Vanco worked!! So many others have done well also and not come down with CDIFF

Good to hear from you


NanciT

JoElizabeth
Regular Contributor
Posts: 306
Joined: Tue Sep 20, 2011 11:46 pm

Re: Hello again from AZ

Postby JoElizabeth » Thu Jul 28, 2022 3:21 pm

Hi guys, forgive me if I forget how to reply here correctly.

Gtr Girl, I had sepsis with cdiff in 2011. I was 55 and healthy at the time and my Primary care doc went looking for why I had been so sick with cdiff. I was an ER nurse so had come into contact with many cdiff patients. But I was also found to have low immunoglobulin levels, that would be IgG, IgM. So I was diagnosed with Common Variable Immunodeficiency. Basically, I don’t make enough antibodies on my own. The treatment for CVID is lifelong infusions of IgG antibodies. I infuse myself at home twice a week and am happy to say that I’ve not had one serious bacterial infection in all of the 10 years I’ve been on it. Sadly, IgG doesn’t cover viral illness and I’ve had a couple of serious flu illnesses.

Beth, so glad your mom did ok with Doxy. I’m on Vanco with it but , for some reason, I don’t feel that concerned. But always wary, as you well know. I hope you are well!

Nanci, I too ended up in hospital in 2020 for a bout of Type A flu and a “Corona” strain. In January of 2020 it wasn’t possible to test for strain but they think I may have had one of the first Covid cases in my city, I spent 6 weeks in the hospital, yes 6 weeks in acute care for multiple complications. I was on IV Vanco for a month. I didn’t relapse with cdiff but did develop red man syndrome. It was awful. Did you relapse from IV Vanco? Did Dificid put you back into remission quickly?

I’m sorry we haven’t seen much in the way of new developments after all these years. Cdiff remains the most serious complication of illness many of us will face. It’s discouraging for sure. But we have hope and Dificid.

Sending love to all who suffer this difficult illness. I know your pain and there is hope. I’m living proof. Cdiff nearly killed me but I’m still standing. You will too. It’s a crazy ride for sure but just hang on.

Jo

NanciT
Long Time Contributor
Posts: 3035
Joined: Thu Sep 18, 2014 12:01 pm

Re: Hello again from AZ

Postby NanciT » Fri Jul 29, 2022 9:23 am

JoElizabeth

Yes in 2020 while on IV antibioitcs was given IV Vanco and also developed Red Man Syndrome. Finally got my ID to put it on the allergy list so Dificid is the ONLY thing that works. Its a battle with insurance and in 2020 I had to buy the 3rd bottle for taper. Difcid taper is what works and it kicks in about the 3rd day.

Very sad to read you are also a nurse. There are many of us on here. The medical Community does not look at the numbers of US getting CDIFF. I tell every MD and Nurse it is devastating to alot of patients. The patients in the hospital are put on Vanco, discharged and then land here. Terribly frustrating. I went into education the last 12 years (Nursing) and created my own antibiotic resistant curriculum with a focus on CDIFF to educate future nurses. How little did we know. There has been a recent study Dificid is superior to Vanco. Google it. It also states he works better for those who relapse.

Take care

NanciT

notheidi
Regular Contributor
Posts: 266
Joined: Sun May 17, 2015 11:24 am

Re: Hello again from AZ

Postby notheidi » Mon Aug 22, 2022 9:59 pm

JoElizabeth wrote:
> > But I was also found to have low immunoglobulin levels, that would be IgG,
> IgM. So I was diagnosed with Common Variable Immunodeficiency. Basically, I
> don’t make enough antibodies on my own. The treatment for CVID is lifelong
> infusions of IgG antibodies.

Jo, I also have primary immune deficiency. Mine is low IgA. Many people are supposedly asymptomatic with it, but for me I have frequent infections which progress to sinus infection and/or bronchitis. It ends up being a 6-8 week ordeal between the original illness and fatigue and reactive airway at the tail end of it. I believe it's this and the resulting antibiotic use over some decades that thinned my flora and made me vulnerable to c diff. It sucks. Caused a lot of problems for me with work attendance. I hope you IgG is helping.
2010 mod/sev w/leukocytosis, cefdenir-sinus inf, metro rx'd wrong, resurged during tx. recovered w/dose change, lost 40 lbs. 2015 mod recur fr SNF, no abx, resolved w/vanco. 7/2022 mod recur, community acq, no abx, intermittent prodrome but didn't realize


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