I am one year off trial drugs and my MRD remains undetectable. In the fall of 2020 I contracted a gut virus that most people recover from in 24 hours. Twenty months later, with no B cells, I still have the virus and its symptom: chronic diarrhea. I've consulted two GI specialists who have helped with management of symptoms. But both say there is no cure for the this virus absent a robust immune system which for me may or may not happen, let alone soon. (I've tried Nitazoxanide with no results.)
Does anyone have any ideas for me?
Thank you!
Mouseandchair
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mouseandchair
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Can you share what your treatment was and for what length of time? I don't have any experience with Norovirus, but wonder if there were others in your trial who may have experienced similar problems, and also what does your CLL Dr. say about any possible betterment of your immune system over time.
Also, it might be beneficial to any who have had some experience with Norovirus to know where you are, as there may be some who can suggest a place for some help for you.
Of course: I live in New York City. I was on a trial of zanubritinib, obinutuzumab, and venetoclax for 11 months. I'm off those meds for almost a year. Thank you for this response!
Hello and thank you! It is my impression that while IVIG is protective against such infections as pneumonia and sinusitis, it does not address norovirus.
I disagree. IVIG has been shown to be used in other viral illness, although a GI based one is different. Early work into IVIG indicated it was useful in hepatitis and other virusus. There have been studies regarding Covid. The second link discusses Covid use specifically, but notes in the introduction IVIG is used to treat other viruses.
I would get it if I could, or at least consider it. Using the rationale "my body expends energy balancing normal flora; I want to support *that* part of my immunity so more energy can go towards norovirus instead of respiratory or whatever, support." As well as making sure my diet was really, really beneficial towards supporting my gut bacteria. Plus making sure I wasn't somehow reinfecting myself. And consider that in the immune compromised, a nitazoxanide course of therapy should be extended, not the same treatment "normal" people use. If your treatment wasn't an extended course, maybe consider extending it.
Thank you, SofiaDeo! I've been getting IVIG infusions for 2 years. Your advice to make sure the nitanoxidine course is LONGER than usual is SO USEFUL. It's on my list for my next call with my GI doc.
And if you are in the US near any of the site mentioned in the attached study below, the National Institute of Allergy and Infectious Diseases is looking at dosing (in transplant patients). So far, they are looking at 500mg twice a day with food, for 28 days. So if you had a shorter course of treatment.....
Have you tried fasting for 5 days? I don’t have any info directly related to fasting and noro and cll, but perhaps a gut rest will help your microbiome to balance out. Another suggestion is to use Align probiotic - available OTC. I have had experience with diarrhea and Align and it worked wonders for me.
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