1. < Infectious Diseases

Reoccurring C-diff with UTI and immune deficiency

Posted by sb4ca @sb4ca, Dec 20, 2023

So in early November I came down with the worst type of diarrhea possible. It came on so suddenly after a month of different antibiotics for 3 different things. It caused my colon to swell and inflamed it through the entire colon through my rectum. I also have a primary immune deficiency called CVID that had not be treated as I wasn’t for years getting serious infections but that changed last year after I got MRSA osteomyelitis from surgery. I also have a minor birth defect that makes me exceedingly vulnerable for UTI’s. Well last week i got a double UTI so I was put on an antibiotic but was also put on a low dose of vancomycin. 2 days later the diarrhea started again. Certainly not as bad as the first time thankfully. I also got my first intravenous infusion of IGG serum this week. But I’m very curious if others here deal with this and how they avoid getting it every time they need an antibiotic. I’m terrified of needing any now

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frances007 | @frances007 | Mar 5 10:21pm

I just saw your post while searching for immune deficiency. A really great site is The Immune Deficient Foundation, as they have an abundance of materials related to being immune deficient. They are also having a conference in Chicago in June, and they are still accepting applications for scholarships. I filled out an application months ago for a scholarship, totally forgot about it until I received a message that I had been granted one for all of my travel expenses to the conference. The Foundation is a terrific non profit, and like this platform you can join discussions with others who are immune deficient. I have my first appointment with an immunologist coming up in a couple of weeks, and the information I gathered from the Foundation has given me a wealth of knowledge. I encourage you to check it out. Here is the linkhttps://primaryimmune.org/

They offer monthly zoom meetings in different parts of the country so that patients can connect with each other. I have signed up for the N. California one that is coming up around March 20 2024. Check it out. I think you will be mildly surprised.

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sb4ca | @sb4ca | Mar 7 6:26pm
In reply to @frances007 "I just saw your post while searching for immune deficiency. A really great site is The..." + (show)
@frances007

I just saw your post while searching for immune deficiency. A really great site is The Immune Deficient Foundation, as they have an abundance of materials related to being immune deficient. They are also having a conference in Chicago in June, and they are still accepting applications for scholarships. I filled out an application months ago for a scholarship, totally forgot about it until I received a message that I had been granted one for all of my travel expenses to the conference. The Foundation is a terrific non profit, and like this platform you can join discussions with others who are immune deficient. I have my first appointment with an immunologist coming up in a couple of weeks, and the information I gathered from the Foundation has given me a wealth of knowledge. I encourage you to check it out. Here is the linkhttps://primaryimmune.org/

They offer monthly zoom meetings in different parts of the country so that patients can connect with each other. I have signed up for the N. California one that is coming up around March 20 2024. Check it out. I think you will be mildly surprised.

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Yes I’m well aware of the foundation and thank you for letting me know in case I hadn’t Do you know they also have an active FB group? For some reason Mayo connect doesn’t have a strong group on CVID I would have thought the opposite but the FB group and another one on CVID is really active You might check there Super congrats on your scholarship I have heard the IDF is soon releasing a streaming video on the condition almost any day now I can’t wait to see that Which deficiency do you have and how has it impacted you?

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frances007 | @frances007 | Mar 7 11:06pm

in reply to @sb4ca Thank you. In all honesty, I don't quite have a good understanding of my deficiencies, only that the IGg levels are all wrong. I am no longer able to take antibiotics, and have had many chronic sinus infections and UTI's (which have abated since I have a neurostimulator for my bladder, thus not using catheters-only when I have to). I also have ulcerative colitis, which may or may not be related, but I intend to ask the doctor as many questions as possible to take advantage of the one hour appointment. Admittedly, this aspect of "whatever is wrong with me" is the only definitive diagnosis my doctors have been able to give to me, and I am a bit fearful of receiving immunotherapy as I have heard some terrible stories in terms of the overall outcome. The treatment is also very expensive, which is a concern that I have to deal with at some point. The Foundation did provide me with some very positive information about the doctor I am seeing, so at the very least I think I can trust he knows what he is doing.
Thank you for telling me about the video, I will keep an eye out for it. I am looking forward to their conference so I can meet others with immune deficiencies, and who wouldn't pass up a free trip to Chicago, which is one of my favorite places. I did not know about the FB page, and truth be told, I am not a huge fan of social media per se.
How did your experience go with the recent treatment. I asked my doctor this week if I could have a Z Pack because the sinus headaches were over the top, and he did give it to me, saying it would be the last time. However, after taking the first dose, the results were "official" and now I have to accept that immunotherapy may now be my only option in terms of infections. Take care

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