RSV now for close to two months

[Par3]

I've had this bad virus which I think is RSV for two months. I thought a few times I was getting better but it just keeps coming back. I seeing my oncologist this week and also going in to see my family doctor as well. I can do most things but generally feel pretty lousy. Coughing constantly and blowing my nose. I am on Calquence right now, just wondering what others have been doing. Thanks.

[bennevisplace]

About a year ago I caught what I think was a RSV, which gave me a persistent productive cough. Eight weeks and hundreds of Kleenex later it stopped. That was 2 years post-treatment, but with low immunoglobulins I was highly susceptible to viral infections (the day I was careless, one got me). More recently I had a GI infection, also viral, which took a month to clear. If you're immunocompromised, it just takes time, with me 3 to 4 times what the doctors say is normal.

[blowinginthewind in reply to bennevisplace]

I am now on about week 5 of a GI thing, which apparently isn't an infection, according to stool tests. Reading this it occurs to me that it could be a viral infection. I am now eating a more normal diet - I had been on a low reside diet at GP suggestion. My friend has had the same thing, and I hadn't seen her for some weeks before she got ill with this thing. Has anyone else had anything like this?

Liz In Manchester

[bennevisplace in reply to blowinginthewind]

If you have developed diarrhoea suddenly and you don't have a history of GI problems, or you haven't changed your diet etc, then it may well be a viral infection. They are quite common and often highly infectious. A lot of Drs assume a bacterial infection, yours has tested for the usual and found none, but they don't test for viruses.

Hopefully your infection if that's what it is will clear up in time. I don't think there's much you can do to accelerate the process.If it goes on much longer you'll need some different tests/ investigations.

[blowinginthewind in reply to bennevisplace]

I am coeliac but haven't had anything at all with gluten in. I have however had occasional bouts of diarrhoea for a few days - but we are talking months and months apart. I have always taken Imodium but GP said not in case it was an infection. I went on a low residue diet instead, which helped a little. Now it has come back at there is no infection, I can take Imodium again. My main problem now though, as I introduce normal diet is bowel sounds, audible to everyone with about 5 yards of me, and passing wind and burping. So been too embarrassed to go out. It doesn't seem as bad today though. GP has offered me a 2 week appt for a scan/camera etc, but the tests for bowel cancer came back negative, and I will see what happens over the next few weeks.

Take care

Liz is Manchester

[bennevisplace in reply to blowinginthewind]

If it were me, I'd definitely have the scan. The camera is a miniature that you swallow and it records what it sees through the digestive system? A kind of remote endoscopy plus colonoscopy. Yes, here we are bowelcanceruk.org.uk/news-a...

The negative "test for bowel cancer" - if that was the usual FIT test from a stool sample, it's not convincing. Ask what threshold f-Hb value they used.

Also, ask the GP if the lab tested your sample for viruses and if so which. I'd be surprised.

Good luck.

[blowinginthewind in reply to bennevisplace]

I will have the scan, but we have been spoilt by having private health insurance via my husbands job, and I already have an excellent gastroenterologist. I have had colonoscopy, scan etc from him in the past. But his NHS practice isn't at the hospital I will have no choice to be referred to if I go as a 2 week referral. The lady giving me the results told me what they had tested for - shigella, listeria, campylobacter, e coli, salmonella - and I will have forgotten some probably. But they were basically a list of food poisoning bugs and dysentry bugs. I am generally feeling quite achey - I will probably see a doctor Tuesday. I will get a referral to see the doctor I want to see. Yes the cancer test was FIT test, and yes they have limitations. But in a few weeks I am at Haematology, and I can talk to them about it - loads of bowel cancer in a direct line down dad's side of the family. I just want to stop feeling grotty.

Take care, thanks for the suggestions

Liz in UK

[bennevisplace in reply to blowinginthewind]

When they tested me it was just for bacterial infections. From what you say they covered the same ones in your case, and they may have added norovirus. hey.nhs.uk/pathology/depart... To me that still doesn't rule out an infection your weakened immune system is having trouble shaking off. But anyway, definitely worth the other investigations.

I too have a family history of bowel cancer, and have recently fallen victim to the new NHS policy on surveillance, meaning I no longer qualify ☹️ healthunlocked.com/cllsuppo...

Best of luck going forward.

[Fran57]

Hello.

I feel for you… my husband ( the one who has CLL) has also had what doctors say is the RSV virus. He started at the beginning of February and is at , what we hope is, the tail end of it!

He hasn’t ever had anything that has lasted as long as this…he is currently taking Venetoclax…and it has come as a shock to him.

Like you, not really ill as such, but the constant coughing has been unrelenting 🤦‍♀️

It was mostly at night, initially, and then at various times during the day…now it seems to be mostly when he wakes in the morning.

Our GP prescribed two lots of antibiotics, which, of course, did nothing (but at least he didn’t get a worse infection, I suppose…).

We saw his CLL consultant, who told him that almost everyone she was seeing at the moment has the same thing, and NON CLL patients were enduring it for a good 6-8 weeks, so he should expect it to be a good deal longer… but it will improve. Also he has not had a raised temperature during it all.

It has been very frustrating.

As I say, it has improved for him, so hang on in there and hopefully you’ll recover (soon -ish 🤞🏻)

Take care,

Fran 😉

[Par3 in reply to Fran57]

Thanks for the long reply. I gives me some hope. I also haven't had a temperature although I have had a few night sweats. Just getting so tired of feeling lousy and coughing all the time.

[Angels2023 in reply to Fran57]

hi! I’m new to all this. Recently diagnosed with CLL on 3/31/23 and just finished 4th infusion of Obintuzimab. I was at the tail end of a horrible 5-week respiratory virus the first week of treatment and my hemoglobin dropped to 7.7 (at 7 they said I’d need a blood transfusion). Thankfully, the infection cleared and by infusion #4 hemoglobin was at 9.0. This is all just a whirlwind right now. So grateful for the forum and the wisdom and kindness of others here.

[Fran57 in reply to Angels2023]

Hi.

Wishing you well… lots of supportive and knowledgeable people here.

Take care,

Fran 😉

[skipro in reply to Fran57]

have you considered acid reflux, or micro aspirations at night. I've been struggling with both for months

[mdsp7]

Feel better soon!

[Lellyandme]

oh yes, the very persistent, reoccurring RSV. Knocks me sideways each time. I’m not on any medication and in watch and wait since 2017… my 3 year old grandson loves to bring me the RSV regularly 😂… it’s nasty !

[CoachVera55]

So sorry, these long illnesses really wear on us. I never expected to need treatment so even with the 13yr 8mos I had before needing it, its a whirlwind too. I started Zanubrutinib & 13 days later ended up in the ER with Pleurisy, left untreated & progressed to Pleural Effusion. I don’t know if the rattling I hear is viral or bacteria. I was sent home with 40mg of Prednisone 1X per day for 6, Nebulizer TX 4X per day, Tylenol every 8hrs as needed. So I am not sure its an infection or just the medication working. I started back with Acalabrutinib but only 1X per day until these lungs clear up. I don’t know what I am doing because I need a Pulmonologist, but I have Asthma all my life & will toilet these lungs. Steam Inhalation works & I love Oil Of Oregano (altho very strong) to clear up my airway. #GODSPEED🙏🏾