Do Covid symptoms last longer with us?

[Tangolover]

I got my first case of covid last Thursday. Started Paxlovid immediately and din't get very sick. I tested Tuesday, thinking I would be negative but still positive. Do CLL'ers take longer to shed the virus?

[Walkingtall62]

Hi, I was positive for three weeks last December but didn’t get paxlovid

[Tangolover in reply to Walkingtall62]

Wow--three weeks! Sure hope it doesn't last that long for me. Thank you for your response!

[lankisterguy Volunteer]

Hi Tangolover,

The simple answer is yes.

CLL causes damage to our immune systems, but the there is a wide range in the amount and type, but for most CLL patients, responding to any infection is slower and less effective. YMMV (your mileage may vary).

-

You may have seen the results of your blood test for immunoglobulins- IgA, IgG, IgM, IgE.

The doctor believe those work together in a complex "layered" defense to deal with infections.

Our neutrophils are the first layer, IgM is next and IgG is later and includes the "memory" of previous infections and vaccines. Most of us have abnormally low levels of one or more of those layers and many have frequent infections that take longer than normal to respond.

-

Len

[Tangolover in reply to lankisterguy]

Thank you for the response. My neutrophils are good. Only low numbers were in IgG and IgM. I had all the vaccines and boosters. I'm just surprised I haven't gotten over it already.

[KatieBlue in reply to Tangolover]

For those of us with CLL and/or undergoing immunosuppressive treatment, vaccines and boosters may not be as effective. I was able to get an out of pocket lab test done a month post covid vaccine (doubles, immunocompromised dose at the time) and did not get a measurable amount of antibodies from vaccination.

I do see notes in appointment scheduling apps that state, “ If you are positive for COVID-19 within 10 days before an IN-PERSON appointment (or 20 days if immunocompromised) contact your clinic to discuss your upcoming visit.“

Immunocompromised/immunosppressed are also much more likely to become potential hosts for new variants.

[AussieNeil Partner Administrator in reply to KatieBlue]

Indeed, there have been a few case studies where immunocompromised folk with B cell malignancies (includes us), have taken a long time to clear SARS-COV-2 and new variants have developed, such asncbi.nlm.nih.gov/pmc/articl...

Neil

[Tangolover in reply to AussieNeil]

Thank you for the info!

[Tangolover in reply to AussieNeil]

Does this mean I am contagious the whole duration of testing positive?

[Tangolover in reply to KatieBlue]

Thank you--I had no idea about that!

[Pekingese]

Hi I took paxlovid and tested positive for 2 weeks

[Tangolover in reply to Pekingese]

Thank you! Maybe it won't take that long, but I am sure grateful for paxlovid!

[Edalv]

As others have said, we are all different. I tested positive for covid at the beginning of July, I started paxlovid the following day for 5 days. On the day after my last dosage I tested negative. In total it lasted 7 days from the day I had the first symptoms.

[Tangolover in reply to Edalv]

Thank you--there is hope!

[GMa27]

I got covid for the first time last month. Treated it like a cold. I didn't know I was exposed till 3 days later. My PA said to isolate for 5 days, continue otc meds & call if I got worse. I was fine in a few days. But she said do not retest. I could test positive for weeks to months. So we don't necessarily have it longer, many non CLLers test positive for a long time. Doesn't mean we still " have it" or are contagious.

[Tangolover in reply to GMa27]

That is interesting~I hope we can't pass it to anyone even though still positive?

[GMa27 in reply to Tangolover]

After 5 days after symptoms, we aren't contagious. I waited 6 to be sure. No one I was with since has gotten it. Unfortunately the body still tests positive which is confusing. Remember when people first got covid & kept testing & couldn't go back to work till negative!? Unfortunately that was false information but we didn't know that yet. People were out of work 4 weeks to 4 months! Some still tested positive.

[Tangolover in reply to GMa27]

Thank you!!

[RobertCLL]

I was on paxlovid and was positive for 12 weeks!!!

[Tangolover in reply to RobertCLL]

Wow!

[garyherm]

Hi. I also got COVID January this year, first time, got the anti-virals next day and did not get very unwell but it hung on for weeks. I was still testing positive at 3 weeks, finally tested negative around 4 weeks.

[Tangolover in reply to garyherm]

Thank you for your response!

[BigfootT]

Tangolover, My most recent bout with COVID was within months of my CLL diagnosis. It was my 3rd time and it wasn't much of anything more than sniffles. My doctor told me at the time the tests aren't very reliable particularly the home tests. If you feel good you're likely over it.

Bigfoot

[Tangolover in reply to BigfootT]

That's good news!

[bennevisplace]

My wife and I both caught Covid last Christmas in France, and symptoms ran in parallel. We both tested regularly. From the onset of symptoms she was virus-negative after 10 days, I after 26 days. Neither of us experienced anything worse than an average cold, and symptoms tailed off in a couple of days.

Two summers ago we both caught a highly infectious RSV, which triggered a nagging chesty cough. Hers continued for 2 or 3 weeks, mine for 8 weeks: annoying but not disabling.

[Tangolover in reply to bennevisplace]

All the best to you both!

[Blue-bird_]

My husband caught covid in December 2022 and was still testing positive in Match 2023. He never developed a cough and was given paxlovid in hospital when he first tested positive. His consultant told us he would still test positive for a while but that he wasn't contagious.

[Tangolover in reply to Blue-bird_]

Good to know!

[Annvaughan]

my husband who has CLL and in treatment with Calquence got COVID for the first time two weeks ago. He took Paxlovid and his symptoms improved. Like you, he also tested positive after completing Paxlovid. He started back with fevers, cough and now conjunctivitis, looks like it’s going to take him a bit of time to get over it. So far nothing that serious. Just an annoying long cold.

[Tangolover in reply to Annvaughan]

I hope he improves quickly!

[Cindi73]

I stayed positive for 28 days after Paxlovid.

[Tangolover in reply to Cindi73]

Thank you for your reply!