4 ms·

In 2021 I presented my doctor a hypothesis that a COVID infection I had recently was persisting in my body leading to long term symptoms. They told me I was com

In 2021 I presented my doctor a hypothesis that a COVID infection I had recently was persisting in my body leading to long term symptoms. They told me I was completely wrong and that RNA viruses do not do that. Fast forward to today and the NIH director and leading scientists believe this has backing proof. https://www.ucsf.edu/news/2024/03/427241/covid-19-virus-can-stay-body-more-year-after-infection https://www.ucsf.edu/news/2024/03/427241/covid-19-virus-can-... https://www.science.org/content/article/long-covid-trials-aim-clear-lingering-virus-help-patients-need https://www.science.org/content/article/long-covid-trials-ai... It has taken me almost three years to convince my doctor on the rationale of using therapeutics acting as COVID antivirals to treat my chronic symptoms. I now have to wait until clinical trials present data hopefully this summer to at least try. So I hope this is a story to show that patients are helping doctors think. And it is very slow going.

gavinray 2y ago
Hypothetically, if one had good reason to believe a certain medication/treatment would work, and has some degree of risk-tolerance, they could acquire said medication online from other countries without trying to convince some doctor willing to listen to prescribe it.
- thenerdhead 2y ago
  People have and have been successful. Especially repurposing HIV/AIDS drugs and ordering Paxlovid from India. Mostly due to USA prices being ridiculously high and insurance companies refusing to prescribe more than a 5 day dose. The other major challenge is that certain approved drugs in other countries can be held by shipping due to FDA approval.
  - bingbingbing777 2y ago
    Not sure why you would be taking Paxlovid for long covid.
    - thenerdhead 2y ago
      There is rationale in the science article I posted above. The current hypothesis is viral reservoirs that are replication competent. Here is the blurb as well: > Paxlovid targets virus that is rapidly replicating—which may or may not be the case for the virus lingering in Long Covid cases.
pc86 2y ago
In 2021 there was almost no evidence of persistent long-term symptoms because very, very few people had COVID far enough in the past (and survived) to have these symptoms start to show up. It's completely reasonable for a front-line GP physician to not go down a rabbit hole like that because their lay patient has a hunch.
- thenerdhead 2y ago
  Not true. There has been evidence of long term symptoms months after the first wave in 2020. By 2021 established hypotheses of viral persistence existed. Viral persistence(2021): https://www.frontiersin.org/journals/microbiology/articles/10.3389/fmicb.2021.698169/full https://www.frontiersin.org/journals/microbiology/articles/1... Persistent symptoms(2020): https://pubmed.ncbi.nlm.nih.gov/32644129 https://pubmed.ncbi.nlm.nih.gov/32644129
  - randm_sequence 2y ago
    I've come to the same conclusion about long COVID in April May of 2020. The evidence is shockingly overwhelming and has been grossly ignored. Some of us have found cocktails that work. Would love to discuss if you are interested.

gavinray 2y ago

Hypothetically, if one had good reason to believe a certain medication/treatment would work, and has some degree of risk-tolerance, they could acquire said medication online from other countries without trying to convince some doctor willing to listen to prescribe it.

thenerdhead 2y ago
People have and have been successful. Especially repurposing HIV/AIDS drugs and ordering Paxlovid from India. Mostly due to USA prices being ridiculously high and insurance companies refusing to prescribe more than a 5 day dose. The other major challenge is that certain approved drugs in other countries can be held by shipping due to FDA approval.
- bingbingbing777 2y ago
  Not sure why you would be taking Paxlovid for long covid.
  - thenerdhead 2y ago
    There is rationale in the science article I posted above. The current hypothesis is viral reservoirs that are replication competent. Here is the blurb as well: > Paxlovid targets virus that is rapidly replicating—which may or may not be the case for the virus lingering in Long Covid cases.

pc86 2y ago

In 2021 there was almost no evidence of persistent long-term symptoms because very, very few people had COVID far enough in the past (and survived) to have these symptoms start to show up. It's completely reasonable for a front-line GP physician to not go down a rabbit hole like that because their lay patient has a hunch.

thenerdhead 2y ago
Not true. There has been evidence of long term symptoms months after the first wave in 2020. By 2021 established hypotheses of viral persistence existed. Viral persistence(2021): https://www.frontiersin.org/journals/microbiology/articles/10.3389/fmicb.2021.698169/full https://www.frontiersin.org/journals/microbiology/articles/1... Persistent symptoms(2020): https://pubmed.ncbi.nlm.nih.gov/32644129 https://pubmed.ncbi.nlm.nih.gov/32644129
- randm_sequence 2y ago
  I've come to the same conclusion about long COVID in April May of 2020. The evidence is shockingly overwhelming and has been grossly ignored. Some of us have found cocktails that work. Would love to discuss if you are interested.