Wonder if this could help others, I know it can help me.
Still testing positive on rapid test, 55 days after getting covid. Got bebtelovimab day one, off zanubrutinib since day one.
Any insight into personal experience would be appreciated.
Wonder if this could help others, I know it can help me.
Still testing positive on rapid test, 55 days after getting covid. Got bebtelovimab day one, off zanubrutinib since day one.
Any insight into personal experience would be appreciated.
LF tests are not that sensitive so either the batch you have is faulty or you have convid again.
When I asked my CLL doc about about avoiding people testing positive, she said people can test positive for 3 months after having Covid. (She might have said 3-6 months but I can’t remember!) She said I only had to avoid people with active virus, 14 days after first testing positive.
So it sounds very normal.
that’s what I keep hearing. Just wondering why positive on certain brands of test, and negative on other brands
yea but when she said this, was she referring to immune suppressed people for the first 14 days
I had been covid positive for 56 days last year. Doctors said it is because of CLL. They told me that the patients under B-cell deplession treatment, or the ones who have B-cell dysfunction and generaly in patients with hematological disease and primary immunodeficiency. virus replication and scattering can continue longer than normal patients. Take care and get well soon.
Demirtas -
How did they treat your chronic infection?
=seymour=
got bebtelovimab day one. Multiple antibiotics for secondary sinus infection.
Davidcara -
I'm watch and wait, and did not get good antibody responses to the 4 vaccines so far. I got Evusheld less than a week before I got exposed, and I got Paxlovid the day after first symptom. I was rapidantigen negative on iHealth the day after last dose of Paxlovid, but was positive and feverish several days later - the fabled rebound.
My COVID lasted at least 21 days - I stopped testing. I did not test every day - I tested at weekly intervals for the most part, plus the day after finishing PaxLovid I had a faint positive on iHealth on day 21, and had very (too?) sensitive BioFire PCR that same day.
I also had a secondary staph infection based on a nasal culture on day 21. That infection lasted another month at least, along with otitis media. We tried 3 or 4 antibiotics. It just slowly got better after a month.
I later did another test rapid test - a BinaxNow - because of a new (and brief) sinus infection, and it was negative.
I'm extremely frustrated at the ignorance of almost all my local medical professionals. Few professionals seems to want to go out on a limb to try stuff on their own - they just wash their hands, and say "I'm not a COVID doctor," and cannot tell me who is indeed a COVID doctor. But I did get a referral to a decent infectious disease guy who was aware of the ramifications of my CLL.
But I expected more out of the medical societies on creating guidelines to treat longer infections, since it's clear that new variants have so much time to develop in us - this threatens the world. Part of the problem now is getting the money to do a study of such individuals as you, to prove which treatments work better. From my collection of case studies, additional doses of Remdesivir and monoclonals, such as Bebtelovimab seem to be what eventually works - but it's not immediate.
=seymour=
Day one iHealth negative, binax now positive. Stopped zanubrutinib and got bebtelovimab day one. Have been consistently iHealth positive, but started being binax now negative 10 days ago. Today actually day 70 negative binax now, positive faint line iHealth and intelliswab rapid test. Also multiple multiple sinus issues with ENT care
Davidcara -
Your experience is not normal, and probably warrants additional treatment. I've gotten the best support and advice from an Infectious Diseases doctor, and not at all from hematologists/oncologists, primary care, ENT, or my allergist/immunologist. Infectious Disease doctors tend to understand chronic infection because of long experience with HIV.
As far as testing and normal period of positivity, this preprint was published a few days ago:
medrxiv.org/content/10.1101...
Duration of viral infectiousness and correlation with symptoms and diagnostic testing in non-hospitalized adults during acute SARS-CoV-2 infection: A longitudinal cohort study
"Conclusions: Most adults have replication-competent SARS-CoV-2 for 10-14 after symptom onset, and N antigen testing is a strong predictor of viral infectiousness. Within two weeks from symptom onset, N antigen testing, rather than absence of symptoms or viral RNA, should be used to safely discontinue isolation."
Note that this is contrary to CDC advice of 5 days isolation, which has been severely criticized as having little scientific basis.
NIH treatment guidelines do note that we tend to have longer infections:
covid19treatmentguidelines....
Special Considerations in People Who Are Immunocompromised
"Prolonged shedding of SARS-CoV-2 has been reported in patients who are immunocompromised. A systematic review found that replication-competent virus could be detected for a median of 20 days in these patients, compared to 11 days in the general population.[11] Prolonged viral shedding may affect SARS-CoV-2 testing strategies and isolation durations for this group of patients.[12] Moreover, case reports suggest that prolonged infections can create evolutionary pressure for the emergence of variants that resist therapies or evade vaccine-induced immunity.[13-15]"
But they say there's no evidence yet for how to treat long infections. But keep checking that link in case of an update. Also, the period of infectivity and positivity varies with the variant and the individual.
There's also more and more reports that such long infections are where new variants come from:
news.emory.edu/stories/2022...
Chronic COVID-19 infections are source of variants of concern, study shows
Unfortunately, I have not seen any recommendations from medical societies on how to deal with long infections, either. There are multiple case studies which show that some people require longer duration Remdesivir antiviral, or monoclonal antibodies. Here's the Infectious Disease Society guidelines to watch for updates:
idsociety.org/practice-guid...
IDSA Guidelines on the Treatment and Management of Patients with COVID-19
They have no advice on chronic or longer infections, though. I guess their members shoot from the hip on a case by case basis.
Also note that some tests are more or less sensitive or specific than others. PCR is no longer considered a good test to do within a week or so of infection unless you get a Ct (cycle count) value. Many COVID PCR tests do NOT provide a Ct value, and probably should no longer be used except for initial diagnosis.
As far as I can tell, nobody is validating rapid antigen or lateral flow tests against each variant - not even the manufacturers. We presume that the manufacturers chose their antigen targets well to be in slowly mutating parts of the virus (the nucleocapsid), but there's so many different brands, it's almost impossible for a consumer to wade through it all.
I wish I had better advice.
=seymour=
been working with ID, today will be my 4th ID appointment since this has all started. I have read multiple citations immune suppressed, especially with B cell blood cancers can and do test positive for weeks to months. Have not seen any recommendations. Will open up the links. Thanks Seymour
I did ask my ID Doctor if she has seen rapid test positivity for this long. She said she has not, but she also said probably because most people don’t test after initial infection.
Davidcara -
Because people run out of tests.
In an ideal world, one would get the full PCR with cycle count, and have it analyzed for the actual sequence to match a variant and compare to future tests to detect additional mutations or infections by a different variant. That only happens in research settings. A few countries may still do such PCR testing regularly, but most have now gone to wastewater surveillance to detect variants in a population, because relatively few individuals are dying right now.
I've seen at least one paper that showed an immunocompromised person who had 2 different simultaneous variants, too.
=seymour=