COVID Antibody tests to prove COVID in case of long COVID? or do you need a positive COVID PCR test?

[Bambam]

I see several saying they want a COVID test to document they have had COVID in case they develop long COVID.
But ... there are Antibody tests that can prove that too, right? Are those not sufficient for whatever you need the original proof for?  I'm part of a study in TX where they take blood samples on a predetermined basis, and they test for natural antibodies (natural infection) or vaccine-induced antibodies (this may not be the right term). 

Is there some reason I'm missing that you do need a positive PCR test vs just the antibody test that shows natural infection? 

[MEmama]

I think this is an important question.

IIRC it has been shown that not everyone creates sufficient antibodies after infection—there are countless people who have had covid multiple times, for example— even the same strain. But testing sounds unreliable too, so it doesn’t seem like future health decisions should depend on a test result that may very well have been incorrect. 

[MEmama]

An anecdote: the husband of a good friend has had covid twice and now suffers from long covid. He has heart and potentially lung issues that developed soon after his illnesses, but according to my friend the doctors aren’t discussing the connection (she, too, seems wholly unconcerned that they are likely connected).

Given its prevalence, I have to wonder if it will just be assumed we’ve all had covid, and treating long covid symptoms won’t depend on unreliable test results, just as current long term issues aren’t dependent on proof of past viruses. 

[Farrar]

I think the thinking is not that there might not be other ways, but that you might want it the best way possible. Like, if you need to show a state ID for something, sure, you can usually show two pieces of mail and another ID, but which would you rather have on hand so you can be sure you get through and get your task done and aren't turned back to try again with different types of mail, etc?

[TechWife]

I'm currently navigating the US healthcare system for other issues. I highly recommend getting tested however you can and keeping records of the tests. A snapshot of the results of a home test will be helpful, even. The system is fractured. Not the very least of the problems we have is that providers don't talk to/listen to/ understand/ believe their patients. They rely on the data. A picture is better than no data at all. Frankly, no one cares as much about your health as you do. Print all test results and keep a hard copy and scan a copy onto your own computer. The systems don't talk to each other and likely never will. Providers don't like to talk to each other, either. If you want a provider to be able to see something down the road - then make sure you keep track of it yourself, because they won't. Specialists archive records at alarming rates. Once it's archived, it takes a tremendous amount of time and work to get access to it again. It's ridiculous.

[MEmama]

17 minutes ago, TechWife said:

I'm currently navigating the US healthcare system for other issues. I highly recommend getting tested however you can and keeping records of the tests. A snapshot of the results of a home test will be helpful, even. The system is fractured. Not the very least of the problems we have is that providers don't talk to/listen to/ understand/ believe their patients. They rely on the data. A picture is better than no data at all. Frankly, no one cares as much about your health as you do. Print all test results and keep a hard copy and scan a copy onto your own computer. The systems don't talk to each other and likely never will. Providers don't like to talk to each other, either. If you want a provider to be able to see something down the road - then make sure you keep track of it yourself, because they won't. Specialists archive records at alarming rates. Once it's archived, it takes a tremendous amount of time and work to get access to it again. It's ridiculous.

This is an important PSA — thank you for the reminder. 

[Murphy101]

1 hour ago, MEmama said:

An anecdote: the husband of a good friend has had covid twice and now suffers from long covid. He has heart and potentially lung issues that developed soon after his illnesses, but according to my friend the doctors aren’t discussing the connection (she, too, seems wholly unconcerned that they are likely connected).

Given its prevalence, I have to wonder if it will just be assumed we’ve all had covid, and treating long covid symptoms won’t depend on unreliable test results, just as current long term issues aren’t dependent on proof of past viruses. 

Many doctors focus on treatment over cause. It’s a huge part of their training. There could be a million factors to the cause but most of the time, that’s not helpful in treating, especially in the moment of treating. So for example if someone comes in with a severe asthma attack, aside from knowing if they can use standard treatments safely, later they will worry about what caused it, at the moment they need to get that airway open and oxygen flowing.

Same goes for much of long covid treatment.  ETA: it doesn’t mean no one is noting the correlation on charts and no one is doing research. Idk about that aspect. But it’s typical and understandable that usually the doctor treating you is not also the one gathering research data.  We have a medical shortage on every level. 

Edited December 30, 2021 by Murphy101

[TechWife]

14 minutes ago, Murphy101 said:

ETA: it doesn’t mean no one is noting the correlation on charts and no one is doing research. Idk about that aspect. But it’s typical and understandable that usually the doctor treating you is not also the one gathering research data.  We have a medical shortage on every level. 

Adding on to this -

If anyone is doing data research, they are doing it with anonymous data. No one is going to to come back to you and tell you they see a trend because they don't know who you are. If you are enrolled in an ongoing study (as opposed to a study that looks back at something that has already happened), then the chances are greater critical information might get back to you, but it might not happen with any speed, I don't know.

FYI - when you agree to an EMR, you are agreeing to have your information included in a certain amount of data mining, just like you are when you cruise the internet.

Most doctors aren't going to take the time to look through your chart unless something major is happening, and then it will likely be a nurse scouring for a single piece of information for comparison purposes. If you want your doctor to look for something, you need to ask them to do it, but without pointing out to them that you may know something about your own body that they don't, because some of them can be weirdly sensitive to that fact.

Get copies of your visit notes. You'd be amazed at the stuff that is left off - like the patient's primary complaint. There are also discussions documented that didn't happen, discussions that happened that weren't documented. Lab results that never get connected back to the primary complaint. You have a right to add to your chart, but you can't make them take something out of it. For example, for an unknown reason, one of my charts says I have COPD. I don't. What I do have is a common name & my info gets mixed up with alarming regularity. But, instead of tracing the error back to it's origin, the chart now states COPD with a notation "Patient states she doesn't have COPD." Now - for those of you that don't know - that's a chronic condition that results in difficulty breathing. You'd think that it would be important to get that right, wouldn't you? Keep in mind that because of my name, there is probably another person in the area who didn't receive this diagnosis in a timely manner.

Because our system is largely fee-for-service, providers spend as little time as possible on non-reimbursable tasks. This is because they need to keep the lights on and it takes a lot of time to read through a patient chart. This is one of the reasons I want to go to a uni hospital - I want students and residents who still have to prove themselves to an attending - they have a different motive & I think are more likely to be curious & not give up. Yes, it's annoying to have five different people ask the same questions, and it isn't something everyone needs, but when five people are asking questions, it also means five people are in on looking for treatments, causes, solutions, etc.

I'm telling  you all, the system is broken.

 

 

[Lawyer&Mom]

I had covid in March of 2020 and was denied a PCR test.  (I hadn’t been to China or near someone with a positive test.  Those were the CDC rules!).  In May of 2020 I had a negative antibody test.  That ruled out covid as far as my doctor was concerned.  My ongoing symptoms were just anxiety…

Now we know that not everyone produces antibodies, or at least not the kind measured by the test.  Now we know that antibodies don’t always last long.  Now we know that the antibody tests were calibrated on hospitalized patients, and may be too high for milder cases (which can still produce LongCovid.)  So antibody testing is not something you want to rely on.  (Neither is PCR testing for that matter.  Some people with covid never test positive.)  The good news is that more and more doctors will treat LongCovid based on the symptoms, not the test.  But it’s still all a mess.  Document as best you can.   

Edited December 30, 2021 by Lawyer&Mom

[KSera]

3 minutes ago, Lawyer&Mom said:

I had covid in March of 2020 and was denied a PCR test.  (I hadn’t been to China or near someone with a positive test.  Those were the CDC rules!).  In May of 2020 I had a negative antibody test.  That ruled out covid as far as my doctor was concerned.  My ongoing symptoms were just anxiety…

Now we know that not everyone produces antibodies, or at least not the kind measured by the test.  Now we know that antibodies don’t always last long.  Now we know that the antibody tests were calibrated on hospitalized patients, and may be too high for milder cases (which can still produce LongCovid.)  So antibody testing is not something you want to rely on.  (Neither is PCR testing for that matter.)  The good news is that more and more doctors will treat LongCovid based on the symptoms, not the test.  But it’s still all a mess.  Document as best you can.   

A positive PCR would be sufficient for sure in establishing that one had had Covid. No one who was ill with Covid like symptoms in March 2020 and unable to get tested knows if they had Covid unless they got a positive antibody test, which as you say, doesn’t tell you anything if negative. The vast majority of people who got tested for Covid at that time when tests were scarce and symptoms were required were negative, which is why I have zero way to know if I had Covid despite having had consistent symptoms and a terrible illness that left me with long term fatigue such that my doctor ran an antibody test six months later to see if that was it (negative). Had I had a PCR test at the time, it would have been extremely helpful. As it is, I assume I had something else most likely, as test positivity was only around 2 percent and there was a very similar adenovirus circulating that winter. 

[busymama7]

I don't quite understand the logic of not being bothered to get a PCR test while sick with covid like symptoms but then rushing to make sure to get a covid antibody test quickly. Even 3 months later could be too late.  Immediately might not even work because not everyone makes/keeps antibodies

I have long covid and hang out in the FB groups.  Being denied care or even acknowledging that the person had or likely had covid is very common.  Most could not prove their likely case with an antibody test usually because it was tried too late.  Getting tested while sick (PCR!) is pretty important IMO.  Maybe possibly less so if omicron basically gets to everyone. But we don't know that that will happen. (but gosh the number of people I know sick right now with covid, entire families even 🥺)

[ktgrok]

My sister is being treated by a neurologist for long covid, and her only covid test was an at home Binax one as far as I know.  Her neuro is amazing though - tested for stuff I've never even heard of, and is writing up a paper about my sister and her improvement when she started taking her ADHD medication again, despite being told by her primary not to take it. (we are a stubborn bunch in this family). 

He couldn't believe the improvement, and said his other patients are NOT doing as well, and he wants to write it up and push for more research. To me it makes sense - Parkinson's has tremors like she was having and is thought to be a dopamine issue. ADHD drugs are thought to increase dopamine. So to me it makes sense that something that increases dopamine could help with something that has symptoms that mimic parkinsons. (her tremors and her brain fog improved on adderall). But most doctors were telling her to take Xanax or similar to help with the tremors - but that made her feel worse, not better. 

Edited December 30, 2021 by ktgrok