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sassenach

UPDATE in OP: Did Shannon have Covid-19? Covid Toe edition

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Some of you saw my previous post about my plan to get antibody testing, followed by my decision to wait for a more reliable test. So while I wait, let's make some predictions. I'll be taking bets whenever I finally get the testing.

My symptoms are not that convincing by themselves but when you combine them with dd's symptoms, it's much more suspicious. Mid-February, dd traveled to LA and honestly could not have been more exposed. She went to a multi-day cheer competition with 15k attendees (think of the projected droplets?!). She also went to Disney, flew round trip, and slept in a hotel room with 8 girls. Also, she's our family's forever patient zero because she is terrible about putting her hands/random objects in her mouth. 

She got sick 5 days after arriving home. High fever, sore throat, exhaustion, diarrhea, loss of taste, body aches (more like body exhaustion, like she had a hard time making her muscles get her out of bed), chills, cough. She recovered after about a week but it took her another 2 weeks to shake the exhaustion. I caught the virus from her. My dominant symptom was sore throat. Like the sorest I've had outside of strep. I had a mid-range fever, chills, diarrhea. Light cough that came up at the tail end but was not terrible. My chest felt heavy for about a month following (kicking myself for never checking my O2 sat). I did not feel as sick as dd.

I've had my worst season of Raynaud's syndrome ever. My toes have been angry since November. So when they got this weird rash/flaking at the tips, I totally thought it was that. Cut to me seeing a news article last week with toes that look JUST like my weird toes. Walking it back, I do think it started around the same time as I was sick, but I didn't connect the 2 things at all, so I can't be sure.

What do you guys think? If you have Raynaud's, do you get weird flakiness at the tips of your toes?

UPDATE: Nope, negative for antibodies. 

Edited by sassenach

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It sounds to me like you both had Covid.  And I remember that news about Covid toes.  It was about some kids having a weird toe thing as one of their covid symptoms.  Interesting.

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I think you had CV19 (or some other new weird virus?) .  I have Raynauds—no strange flaking. 

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Can you contact some university or state health department with regard to if there’s a good very specific antibody test both of you could get? 

A cheer competition sounds like something contact tracers should know about if it was a spread situation. 

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Yep, Shannon and her daughter, both had Covid. I wouldn't even bother with a test. Even if you take the test and get a negative, will you trust the negative result? Or just assume you are in the false-negative category? I would. 

Sure there are lots of illnesses that it could be.....but it seems like it hits the symptoms pretty accurately. I would assume that it was it was. 

Glad you are all finally better! 🙂 Since dd tends to be patient zero in your house, I would work diligently to get her to stop mouthing objects, using this as an example. I know it can be hard (I have an autistic daughter with some quirks), but unless she has some struggles that make this goal insurmountable, it really is a dangerous habit in current times.  Since they don't know if you can get it twice or if it is mutating enough for a second round, I would worry about getting a worse illness, in bodies that struggled so long to fight off the first illness. 

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11 minutes ago, Tap said:

Yep, Shannon and her daughter, both had Covid. I wouldn't even bother with a test. Even if you take the test and get a negative, will you trust the negative result? Or just assume you are in the false-negative category? I would. 

Sure there are lots of illnesses that it could be.....but it seems like it hits the symptoms pretty accurately. I would assume that it was it was. 

Glad you are all finally better! 🙂 Since dd tends to be patient zero in your house, I would work diligently to get her to stop mouthing objects, using this as an example. I know it can be hard (I have an autistic daughter with some quirks), but unless she has some struggles that make this goal insurmountable, it really is a dangerous habit in current times.  Since they don't know if you can get it twice or if it is mutating enough for a second round, I would worry about getting a worse illness, in bodies that struggled so long to fight off the first illness. 

I feel like whether it comes back positive or negative, it would not change my overall behavior much. But I am more prone to assume a negative is a negative to keep myself in the right mindset. 

Dd is a totally typical 15yo, so she's fully capable of making the adjustment. She has just ALWAYS been that kid. Like I looked down once at a tourist attraction and she was literally licking the handrail as we walked the line (she was 3). THAT KID.

 

Edited by sassenach
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35 minutes ago, Pen said:

Can you contact some university or state health department with regard to if there’s a good very specific antibody test both of you could get? 

A cheer competition sounds like something contact tracers should know about if it was a spread situation. 

That's not a bad idea though it's been almost 3 months so I doubt they would do anything tracing wise.

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22 minutes ago, sassenach said:

I feel like whether it comes back positive or negative, it would not change my overall behavior much. But I am more prone to assume a negative is a negative to keep myself in the right mindset. 

Dd is a totally typical 15yo, so she's fully capable of making the adjustment. She has just ALWAYS been that kid. Like I looked down once at a tourist attraction and she was literally licking the handrail as we walked the line (she was 3). THAT KID.

 

It is funny how people get such funny habits and don't even realize they are doing it. Mouthing things is such a normal part of childhood, there is just a point when most people stop and some people just never really do. I had a super sweet coworker that chewed on pens. It was sooooo gross. We work in pharmacy and touch dirty prescriptions and medications all day. Yuk!  I would return every pen to her that had been chewed on. I would tell her it was the equivalent of leaving chewing gum on the counter, but she just really struggled with stopping. She said the imagery helped, but it was still just a habit. She changed jobs (couldn't get the math of pharmacy down) and about a year later I asked her boss if she still did it. They said they didn't see chewed up pens laying around, so hopefully she stopped. It was disgusting! 

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29 minutes ago, sassenach said:

That's not a bad idea though it's been almost 3 months so I doubt they would do anything tracing wise.

No way to trace it from there so many months later. Unless the girls she bunked with had it too, they might trace that but I doubt it. I would assume any large public event in Feb/March fed the Covid outbreak. Since they can't confirm whether she got it at the cheer competition, Disney, or in between, it would be only a guess at this point. 

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1 hour ago, sassenach said:

That's not a bad idea though it's been almost 3 months so I doubt they would do anything tracing wise.

 

I thought some big conference in Nevada was being looked at even though it has been a long time after the event.  I may be wrong though. 

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43 minutes ago, Tap said:

No way to trace it from there so many months later. Unless the girls she bunked with had it too, they might trace that but I doubt it. I would assume any large public event in Feb/March fed the Covid outbreak. Since they can't confirm whether she got it at the cheer competition, Disney, or in between, it would be only a guess at this point. 

Yeah, can you imagine? Disney, convention center, airports, airplanes, all the food places.... the good news is that she had very little movement in her latent phase because she came home from that big trip and it was spring break, so she mostly stayed home to recover from the trip. She got sick before school started back up and then missed a whole week of school. So thankfully, she didn't expose anyone outside of our family.

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2 hours ago, Tap said:

Or just assume you are in the false-negative category?

False negative antibody test results are much more rare than false positives, due to the nature of how the tests are done.

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Yes, you all probably got CV19. Most existing tests for antibodies are not reliable, anyway. I suggest that you wait for an accurate test and get it administered through your physician, whenever that is feasible. 

In late january, my son got a similar illness (San Jose area) - 3 days after he attended a multi-day tournament with several hundreds of people from out of town participating and watching. Honestly, he could have easily gotten it from his orchestra or music school which had lots of sick kids. We all got sick, son bounced back quickly, I got a less severe version than him and my DH got the worst hit and he was sick for 4 weeks (he does not go out in the sun, has a known vitamin D deficiency). Several others in my neighborhood were very sick as well (some required ventilators) but nobody died during that wave.

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7 hours ago, sassenach said:

Some of you saw my previous post about my plan to get antibody testing, followed by my decision to wait for a more reliable test. So while I wait, let's make some predictions. I'll be taking bets whenever I finally get the testing.

My symptoms are not that convincing by themselves but when you combine them with dd's symptoms, it's much more suspicious. Mid-February, dd traveled to LA and honestly could not have been more exposed. She went to a multi-day cheer competition with 15k attendees (think of the projected droplets?!). She also went to Disney, flew round trip, and slept in a hotel room with 8 girls. Also, she's our family's forever patient zero because she is terrible about putting her hands/random objects in her mouth. 

She got sick 5 days after arriving home. High fever, sore throat, exhaustion, diarrhea, loss of taste, body aches (more like body exhaustion, like she had a hard time making her muscles get her out of bed), chills, cough. She recovered after about a week but it took her another 2 weeks to shake the exhaustion. I caught the virus from her. My dominant symptom was sore throat. Like the sorest I've had outside of strep. I had a mid-range fever, chills, diarrhea. Light cough that came up at the tail end but was not terrible. My chest felt heavy for about a month following (kicking myself for never checking my O2 sat). I did not feel as sick as dd.

I've had my worst season of Raynaud's syndrome ever. My toes have been angry since November. So when they got this weird rash/flaking at the tips, I totally thought it was that. Cut to me seeing a news article last week with toes that look JUST like my weird toes. Walking it back, I do think it started around the same time as I was sick, but I didn't connect the 2 things at all, so I can't be sure.

What do you guys think? If you have Raynaud's, do you get weird flakiness at the tips of your toes?

 

Yes, I think you both had it. I had an illness very similar to your symptoms also in mid-February. My worst symptom was also an extremely sore throat, low fever, and a dry cough. The cough wasn’t deep or severe but lasted for weeks. I haven’t had the toe thing. But, based on your other symptoms, I would guess you had it.  

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Well, I had all the symptoms of COVID in Feb including the atypical pneumonia, severe cough, fever, etc.

My doctor was almost sure that is what I had.   I did the IGg antibody test and it was NEGATIVE.  False negatives are very rare.  So....either I did not have COVID but had another bad/weird non influenza virus or after 3 months the antibodies are gone (not likely).

It was disappointing as we all really thought I had had it 

 

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10 minutes ago, Ottakee said:

Well, I had all the symptoms of COVID in Feb including the atypical pneumonia, severe cough, fever, etc.

My doctor was almost sure that is what I had.   I did the IGg antibody test and it was NEGATIVE.  False negatives are very rare.  So....either I did not have COVID but had another bad/weird non influenza virus or after 3 months the antibodies are gone (not likely).

It was disappointing as we all really thought I had had it 

 

Oh, I'm so sorry! I totally think that's possible for us. Such a large portion of the tests they have done are coming back negative and lots of people thought they had it but didn't. I definitely don't want to bank on it.

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9 minutes ago, sassenach said:

Oh, I'm so sorry! I totally think that's possible for us. Such a large portion of the tests they have done are coming back negative and lots of people thought they had it but didn't. I definitely don't want to bank on it.

That’s what I was going to say. I’m in a similar boat, having been in a hot spot and had classic symptoms in March, along with three family members, but I’ve seen so many people test negative after being sure they had it that I lean toward thinking it probably wasn’t what I had, even though I wouldn’t be surprised if it was. I was sick a long time and took a long time to get better. Sore throat, fever, dry cough, headache, and conjunctivitis were some of my symptoms and I was wiped out for a couple weeks after my main symptoms resolved. It was over a month total. On the toes, my two year old  had the same peely toes happening but I think hers started before she got sick. Now I can’t remember for sure, though. I read that can happen with various viruses. 

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1 hour ago, Ottakee said:

Well, I had all the symptoms of COVID in Feb including the atypical pneumonia, severe cough, fever, etc.

My doctor was almost sure that is what I had.   I did the IGg antibody test and it was NEGATIVE.  False negatives are very rare.  So....either I did not have COVID but had another bad/weird non influenza virus or after 3 months the antibodies are gone (not likely).

It was disappointing as we all really thought I had had it 

 

 

When ds was sick instructions were basically to deal with it as though it **was** CV19 from POV not infecting anyone else, but as it was Not CV19 from POV thinking he would have developed resistance to further infection.

There were apparently quite a lot of weird viruses going around this past winter/spring. 

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I don't know how the antibody testing works or if there is more than one test, but I'm not sure of the accuracy.  I'm not sure I would bother with one right now.

Another forum I'm on has two doctors in different states who have treated confirmed COVID patients at their clinics (some requiring hospitalization) and several others who had all the symptoms, but because of the limits on testing, could not get tests for those patients. Both doctors have reported several of those suspected cases have tested negative for antibodies upon folllow up and as they discussed back and forth on that forum, they seem to think that mild-to-moderate cases don't provide antibodies. Meaning, if you recovered at home, you won't show antibodies. That's their theory at the moment.

I was listening to NPR a week or so ago and there was someone on talking about the (his?) antibody test and the host asked about false negatives and he said some people who were confirmed COVID are not showing antibodies so while his test is 99% ( he may have said 98%) accurate, it is possible that there isn't any antibody stuff to register on the particular spot they take the sample and a repeat antibody test might show different results. Something like that.  He reiterated that if there is any of what they look for on that sample, their test will find it, to that 99% or 98% accuracy. He also posited that milder cases simply don't produce antibodies.

Based on the above and hearing about so many people showing zero antibodies, I'm just not confident in the results at this time.

Like much info regarding COVID, there is no way to confirm anything, but I thought I'd share. FWIW.

 

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Despite the unknown on what exactly antibodies mean, I still want to know. Roche and Abbott both have FDA approved, non-rapid tests that I will be looking into this week. They both look fairly reliable.

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Since I think way more people had it and were not tested and just let it pass like a horrid  cruddy flu, I vote positive for you. :)

 

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39 minutes ago, sassenach said:

Despite the unknown on what exactly antibodies mean, I still want to know. Roche and Abbott both have FDA approved, non-rapid tests that I will be looking into this week. They both look fairly reliable.

 

Let me know what you find out. I am especially interested to know if there are antibodies and if they can protect. May not get the answers to everything right away though as in the words of the scientists" We are flying the plane while we are building it."

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1 hour ago, sassenach said:

Despite the unknown on what exactly antibodies mean, I still want to know. Roche and Abbott both have FDA approved, non-rapid tests that I will be looking into this week. They both look fairly reliable.

the Abbott test is what is being used locally by a lot of physicians and they seem to trust it more than the others if that helps in your decision making ...

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Your experience almost exactly mirrors ours--dd16 flew to Houston near the end of February for an international karate competition, came down with a fever and cough about three days after getting home. I caught it from her and my primary symptoms were very sore throat, headache, and fever, followed about a week in by mild cough and a feeling of tightness in the chest that lingered for a couple of weeks.  I did have a strep test which was negative. I got over the main symptoms but have been dealing with chronic fatigue and frequent dull headache ever since.

Near the tail end of my illness I was able to get tested for covid-19 and the test came back negative but that may be because I was already past the viral shedding phase; I got tested as soon as widespread testing became available in my state (sooner than most states) but it wasn't available until more than two weeks after my first symptoms.

I am very curious to see what antibody testing might show; I should call my doctor and see if they have testing available.

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On 5/7/2020 at 1:18 PM, sassenach said:

I feel like whether it comes back positive or negative, it would not change my overall behavior much. But I am more prone to assume a negative is a negative to keep myself in the right mindset. 

Dd is a totally typical 15yo, so she's fully capable of making the adjustment. She has just ALWAYS been that kid. Like I looked down once at a tourist attraction and she was literally licking the handrail as we walked the line (she was 3). THAT KID.

 

lol, I once caught my kid licking a frozen turkey at the grocery store. He is also the one that strangers would say, "um, ma'am...did you know your child is licking the shelf?"

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So, on the topic of antibodies...

My son, when we were first getting his PANDAS diagnosis, was tested for Strep antibodies, per usual. He had already had a positive strep test a month or so before that, had strep symptoms, had a sibling with a positive rapid test, responded to antibiotics, etc. Antibody test was negative. With research I found out that over 1/3 of people with positive strep cultures will test negative for antibodies later. It just is not reliable. 

This is also why in vet medicine we don't like to run titers in lieu of vaccines...they just are not really a reliable indicator of anything. 

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1 minute ago, Ktgrok said:

So, on the topic of antibodies...

My son, when we were first getting his PANDAS diagnosis, was tested for Strep antibodies, per usual. He had already had a positive strep test a month or so before that, had strep symptoms, had a sibling with a positive rapid test, responded to antibiotics, etc. Antibody test was negative. With research I found out that over 1/3 of people with positive strep cultures will test negative for antibodies later. It just is not reliable. 

This is also why in vet medicine we don't like to run titers in lieu of vaccines...they just are not really a reliable indicator of anything. 

I hear you. But also, don’t you think a bacterial infection is inherently different than a viral one? 

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13 minutes ago, sassenach said:

I hear you. But also, don’t you think a bacterial infection is inherently different than a viral one? 

In some ways, yes. But at the point he was, post infection, he should have had antibodies, and didn't according to the test. My point wasn't the immunity itself, but the unreliability of antibody tests in general. 

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