Has anyone in this CLL community had success in treating Norvovirus?
I have not been tested but Norvovirus is prominent in my area (also referred to as the stomach flu, but it is not a flu). Everyone in my household has had it, presenting with gastroenteritis, vomiting , food aversion, and usually diarrhea. But for me, the gastroenteritis and food aversion is continuing and my weight is teetering very low; food aggravates my gut.
My concern is that this is becoming chronic after 4 weeks. Probiotic foods are not helping, I've been taking broths which soothe.
I'll soon head into my PCP to get tested and see what she recommends. I postponed my quarterly visit to my my CLL drug trial care team, I'm not well enough for the entire day and 6 hour drive it requires.
Thanks for reading,
Otter
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Otterblue2
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Have you tried a pedialyte-type beverage to help with dehydration, which can contribute to malaise?. You can chill it somewhat if room temperature isn't palatable. IDK what probiotics you are trying, but my go-to is plain, organic, grass fed, whole milk, youghurt or kefir. Nothing with sugars or flavorings commercially, add a little something at home if you can't stand it plain. Crush/blend some blueberry or banana or other "make it taste better" thing if you like. It doesn't smell like a broth does IMO. Replacing fluids/electrolytes is really important, as well as getting some protein in you.
I blend egg white protein with ground golden flaxseed as a homemade "Ensure" type thing. (Note: golden is mild tasting, regular flaxseed has a much stronger aroma & taste) You could mix it with chilled Pedialyte type liquid, to get an easy to digest meal substitute that has some protein, fiber, and minerals/electrolytes. I don't like commercial preparations like Ensure because of the chemical flavorings, sugars, etc. but an occasional one would be better than no nutrition. But my gut is super sensitive to chemicals, yours may not be, even when you are sick.
So sorry to hear you are feeling so awful. If you *are* dehydrated a bit, maybe your doc can give you a "banana bag" if they have the ability at his office. It's an IV with vitamins in it. Even a plain IV would hydrate you quickly, without any nausea or GI upset from trying to drink liquids instead of infusing them. Have you done the "back of the hand" pinch test to check for dehydration? Normal hydration, skin returns back down flat very quickly after pinching it for a few seconds. If the pinched skin fold stays, or is slow to go flat again, you *may* have dehydration. Other things can affect skin elasticity, but it's often a decent indicator.
Thanks Sofia, that is really interesting to read. For a while I have been ‘against’ chemical additions to foods, and thought I was just being picky. I just like ‘real’ food. Just pinched the skin on the back of my hand too!
I have found food chemicals aggravate my fibromyalgia. Even something as minor as garlic with sulfite preservatives in a jar. I once got ill from a meal of PEI mussels in a white wine broth, where the broth was made with preserved garlic in a jar. Don't get me started on "natural flavors", which are often MSG analogues and really set it off!
Thanks for your detailed response, Sofia. Yes, I was very dehydrated according to the pinch test. Moroccan mint tea is working this morning for the nausea and pain, and I am getting back on broths, I'll be making some chicken soup today. I will keep some pedialyte on hand. My organic raw milk homemade yogurt, curiously, exacerbates my gut right now.
My deeper concern is whether my compromised immune system can kick this virus now that I am a month into something that lasts a few days with normal immune system. I've been doing mostly broth soups for 3 weeks and although they soothe, they do not resolve the ongoing gastroenteritis. I lost 10 lb.s quickly and am now very underweight.
If you haven't thoroughly, aggressively sanitized most of your house (since everyone had it) I wonder if there is some element of re-infection going on. Norovirus isn't removed by the usual cleaning methods.
Any chance your materials/countertop etc used in making the youghurt got contaminated? Everything needs to have bleach sitting on it *at least 5 minutes* if contamination is a possibility, per the CDC.
So with everyone in the house being ill, literally all surfaces in bathroom, kitchen, etc. should have been *aggressively* sanitized IMO. On top of aggressively cleaning the laundry. Even your washing machine should probably have gotten cleaned/disinfected with the entire household ill. Remember norovirus can live at higher temps than many other viruses. If everyone in the house was sick, and literally all surfaces haven't been fully sanitized, there may be a small element of re-infection going on. Not to mention, you are likely still shedding virus. If any happened to get into your youghurt, the mild heat used in making youghurt may not kill it. And with you still likely shedding, aggressive cleaning needs to continue a while.
This link talks about the recommended methods of sanitizing to eradicate Norovirus, including the minimum bleach dilution needed. Plus a link to other sanitizers if you don't want to use bleach.
Maybe try Maple Hill Farms grassfed organic youghurt for a change, if you want yoghurt, see if your gut reacts to that. They have a Greek style too if you are longing for something less watery. I don't remember the brand of kefir I get, possibly it's Kalona Supernatural, I get a lot of their items. But see if possibly the homemade stuff got a few particles of virus in it, and that's why you are reacting. As opposed to "my gut doesn't want any dairy At All right now". (Norovirus can affect lactose and fat absorption, perhaps avoiding foods containing high amounts of these may be prudent short term)
Norovirus can be shed before people show symptoms, it's really tricky. Especially in the immune compromised. So sorry to hear you are dealing with this.
Hugs to you - stomach illnesses suck! Ever since I had my gallbladder out, I also suffer longer than anyone in my family, and now with the CLL, it's normally a 2 week process for me (although the vomiting and nausea end sooner, and then it's the inflamed digestive system) to handle a stomach virus that my family kicks in 24-48 hours.
Dairy is normally rough to digest, so if your whole digestive system is still highly inflamed, it's not gonna go well, even if it's probiotic type stuff.
I'd take a probiotic in pill or gummy form (that's how I take mine) to see if that might start helping as I'd do what you do and go back to the beginning with the BRAT diet.
In my BRAT diet, I find powdered ginger, raw honey, and miso soup tend to be really helpful to me, but YMMV. And bananas and rotisserie chicken. Lots of bananas and rotisserie chicken!
Thanks for the hug, MisfitK. Yes, diet adjustment is crucial when you're not eating much. I find that my 24 hour ferment yogurt rebuilds my microbiome, but is contraindicated if there is inflammation.
You have seemed to try everything you have used in the past for such an illness. As you know, you are not the person you were in past illnesses.
Also you posted 19 days ago reporting you were having "gut reactions" and were Anemic after the AVO trial you had been on.
If you have not seen a Dr., waiting any longer to do so does not seem to be a wise move. Hospitalization is more likely the longer you go without adequate nutrition and continue to lose weight or not gain any. And, it would most likely be wise to have your blood levels checked.
agreed. I'm in contact with my care team at Dana Farber. Could not make my appointment this week because my husband(driver) was ill with it too and I could not go on my own.
Any chance a local Urgent Care center can give you some IV fluids? Or do you have access to Home Health services? There are some companies where I am at, who will come to your home for simple IV's and such and bill your insurance. But I am sure this is 't an option for everyone.
💛Thank you for your suggestion, I am back to drinking and eating drinking- no longer dehydrated. I was able to eat beef stew and drink lots of liquids today. I think I'm out of the danger zone and should be able to continue to eat. I'm scheduled for Friday at Dana Farber, and my PCP is checking in with me on Monday to see if I need an appointment before Friday.
That has lasted an awfully long time - we sanitised everything when it ran through our house, unfortunately, at first, I thought I had just plain old food poisoning - it was only when my family came down with it too we realised what it was ( having eaten completely different meals away from home and not together). We got rid of it in 3 days but it has a 72hr incubation period ( so I’m led to believe) - best wishes for a speedy resolve.
I feel you! I'm prone to tummy bugs of various kinds, and once the acute symptoms have passed it normally takes about 6 weeks to get my poor sad gut back to relatively normal. As you recover, things that have helped me are the BRAT diet, and proton pump inhibitors. My doc tells me that after a bad stomach infection you can get a bit of gastritis, so a PPI can help (Omeprazole in my case). Doesn't resolve it, but definitely helps to improve appetite a bit! Plus take it easy! You don't realise how much energy it takes to digest stuff until it becomes problematic. Hope you feel much better very soon 🙏💚🙏
I'd like to offer my own experience with norovirus. I suffered through 2 years of chronic diarrhea after an 11-month (SO successful!) drug trial. Every stool sample confirmed "norovirus." With the help of 2 docs (GI specialist and infectious disease specialist), TWO colonoscopies, and a disciplined drug regimen, it was discovered that yes, there is norovirus, but what was really causing the problem was an established bacterial colony which my immune system was in no shape to address. I am now 95% diarrhea-free.
It looks like you and your family may be pulling out of this. If it lingers in you, PLEASE find a GI specialist who will stick with you. Many docs lose interest if they cannot "fix" you immediately. This one retained interest in me as a challenge and I am so grateful.
Wow, that's quite a story, thank you for your ideas. I just found a really good PCP who is dedicated to deal with issues very promptly. I think I am turning the corner now and will be able to rebuild. It feels like the virus has finally run it's course after a long month.
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