I have COVID-19 and No, It's Not the Flu

[Another Reader]

How about going on with this? The references to web sites, folks posting on other forums, individual FB pages, etc., are ok, but it seems that what caught my (our) interest is that you requested that the mods allow you to tell your personal story. But you seem more interested in just advertising alternative sources of information than the so-called "mainsteam."

This is an anomymous forum. You can give personal details. Please do. There seems to be lots of interest in your specifics.

That's probably a fair request, although no forum is completely anonymous. Again, I do not want to get into a debate about whether I have COVID. If you are squeamish, you may want to skip this post. If the moderators feel this is inappropriate, please delete and let me know how you want me to respond.

When I literally fell on the bed on April 21, I was shaking so badly I could not stand up. I had waves of flu-like rushes go through me. Sometime around midnight. I crawled to the bathroom. I managed to use the bathroom and get a drink of water. In the morning, I was able to stand. I don't recall a lot, but I ate something and went back to bed. Later in the day, I felt a little better, so I called the PAMF PCP and asked what to do. I was given an appointment at their respiratory clinic the next morning. That was the only place they were seeing patients at that point.

The next morning, April 23, I was able to get dressed. I don't recall the drive, but somehow I got to Mountain View. By then, I was running a fever of 100.3. That's the highest temperature I have had throughout this. My eyes were dripping. No cough, no congestion. I was examined in my car and was swabbed. The doctor said that because I did not have pneumonia, I probably had the flu. She gave me a prescription for an inhaler, which I did not need. I made it home and back to bed. I was able to eat and shower Friday. Saturday, I was back to shaking. By Sunday night, I had shortness of breath and chest and shoulder pains. Monday morning (April 27) I was sent to Urgent Care for those symptoms. EKG, chest x-ray good. Swab tested again. Both tests came back negative.

After that things became a blur. I would have the shakes at night, and be able to get up and eat during the day. Some days I could get to the mailbox. Others not. I was constantly dehydrated. I drank five bottles of water a day. I had shortness of breath. My blood pressure went up. There was no improvement.

On May 7, I started developing tremors separate from the shaking. I watched my fingers move on their own. Fascinating, but frightening. The following day, the tremors expanded. I started having trouble with my left leg not working. Saturday morning, I woke up abruptly at 3 AM. I was having trouble breathing and I could not stand on the leg. I downed a bottle of water and took a zinc supplement. I had been taking zinc for the eye infection and it seemed to help with the other symptoms. After half an hour, I was able to get dressed. I drove to the Stanford ER. No way was I going to any of the local HCA-owned hospitals.

At Stanford, they ran a bunch of blood work and an EKG. I really don't remember everything they did. Gave me a bag of fluids. They observed the leg issue and the tremors. At around noon they sent me home with discharge documents indicating essential tremors. Told to call my doctor for a neurology appointment ASAP.

I obtained a referral to neurology at PAMF from my PCP. While I have lots of good things to say about Stanford, the response from PAMF has been horrible. I tried to get a neurologist appointment Monday or Tuesday morning. I was questioned about my symptoms. The assistant saw the multiple COVID tests and said they could not see me because of the risk of COVID. If I had worsening symptoms, I was to go to the ER.

My neurological symptoms worsened through the week. My leg continued to cause problems. The shortness of breath got worse and I developed tachycardia. Friday morning I woke up and could not stand. I managed to get dressed and literally drag myself to the car. When I got to Stanford, they had to bring a chair to the car to get me to the door. I was swab tested (new protocol - rapid test) and taken into emergency.

My four days at Stanford will go in a separate post, if more information is deemed appropriate.

This is much more detail than I wanted or intended to provide in a public forum. I hope it is helpful in understanding this illness. It's important to understand my symptoms are not unique. Most of these symptoms have been reported by members of the two support groups, although not necessarily in the same order or by the same people.

 

[MissMolly]

WADR respect, that's anecdotal. Every indication so far is elderly with underlying health conditions are at FAR greater risk than elderly otherwise healthy or young (under 55). There will always be exceptions, but that's not a basis for all of us to assess our individual risk.

On average over 100 people are killed in auto accidents every day in the US, but I don't know anyone who doesn't drive out of fear. I am sure there are a few people, but VERY few.

WADR 100 people a day dead from car accidents for the last 3 months would be about 9,000 folks. Deaths from COVID for the last 3 months is 122,000+. If only 9,000 people had died from COVID over the last 3 months, there would not be this level of concern. I don't understand how you think there is any reasonable comparison in these 2 numbers.

 

[Midpack]

WADR 100 people a day dead from car accidents for the last 3 months would be about 9,000 folks. Deaths from COVID for the last 3 months is 122,000+. If only 9,000 people had died from COVID over the last 3 months, there would not be this level of concern. I don't understand how you think there is any reasonable comparison in these 2 numbers.

I wasn't painting them as equivalent, I was trying to illustrate (with one significant example most can relate to) we have to consider the risks and act accordingly. There are many risks out there we all face every day, auto accidents are one of many.

And it's worth pointing out the risks are vastly different for some segments of the population than others, instead of cases that may be exceptions with what we know so far.

 

[pacergal]

OP--
Thank you for your story, I hope you continue to improve daily.

I believe our family went through Covid in early March. All had various symptoms over the course of 6 weeks +. My PCP thinks we had it based on symptoms(no testing done as none of us was bad enough for ER and there was extremely limited testing here)
I finally went in for antibody test when my taste buds came back, after about 3 months--surprise; negative!
So, I think we had it, Doc thinks we had it, test says no.
There is so much we still don't know about this disease!

 

[youbet]

That's probably a fair request

You're darn tootin' it is! And thanks for your response.

I do not want to get into a debate about whether I have COVID.

Let's see, how can I do this? I fully, 100% believe you have COVID with absolutely no doubt. No question. But as I read your symptoms, I was drawn in by the fact that I had similar symptoms from salmonela years ago. So, I can verify, those kind of bodily malfunctions aren't fun! Even if my symptoms were from a completely different cause.

If you are squeamish, you may want to skip this post. If the moderators feel this is inappropriate, please delete and let me know how you want me to respond.

You might be thinking that the members and mods are more fragile than they are. Your descriptions, while clearly illustrating how intense the symptoms and situation were, are not off the scale by any means.

What I'm taking away so far are the ugly symptoms you displayed from COVID and yet you tested negative multiple times. Something to think about. Others test positive and yet are asymtomatic. Sounds like we have a long way to go to understand COVID.

Thanks for adding to our ongoing COVID discussion and sharing your personal experience.

 

[Another Reader]

OP--
Thank you for your story, I hope you continue to improve daily.

I believe our family went through Covid in early March. All had various symptoms over the course of 6 weeks +. My PCP thinks we had it based on symptoms(no testing done as none of us was bad enough for ER and there was extremely limited testing here)
I finally went in for antibody test when my taste buds came back, after about 3 months--surprise; negative!
So, I think we had it, Doc thinks we had it, test says no.
There is so much we still don't know about this disease!

Antibodies decline quickly. No surprise you are negative three months out. Lots of people that had it, including some with positive virus tests, are negative for antibodies.

 

[harllee]

Another Reader, wow you have had a terrible time, I do so hope and pray you improve. I assume you live by yourself? Do you have anyone to help you get food, supplies, etc?

 

[audreyh1]

OP--
Thank you for your story, I hope you continue to improve daily.

I believe our family went through Covid in early March. All had various symptoms over the course of 6 weeks +. My PCP thinks we had it based on symptoms(no testing done as none of us was bad enough for ER and there was extremely limited testing here)
I finally went in for antibody test when my taste buds came back, after about 3 months--surprise; negative!
So, I think we had it, Doc thinks we had it, test says no.
There is so much we still don't know about this disease!

Wow - taste buds turned off for 3 months!!!

 

[youbet]

Wow - taste buds turned off for 3 months!!!

So...... I could drink cheap wine for the buzz without putting up with the bad taste?




Edit: Sorry, didn't mean to make light of a serious situation.

 

[splitwdw]

Another Reader, Thanks for posting you story. Hope you continue to recover.

 

[harllee]

Estimates from Britain are 5 to 20 percent of cases are showing signs of extended symptoms. They went through the initial wave at least month earlier than we did. Almost no one was tested. Diagnoses were largely presumptive, based on symptoms.

Another Reader--I have read all your links, thank you for those, they are helpful and I have forwarded them to others. If we are conservative and say that in the U.S. at least 5% of Covid 19 cases show signs of extended symptoms then is it reasonable to estimate there are at least 100,000 people in the U.S. with extended symptoms so far? In the links you provided most of the patients interviewed were fairly young. Do you think that most "long haulers" are under age 50? (I guess the older severely sick people would have died)

 

[Another Reader]

Another Reader--I have read all your links, thank you for those, they are helpful and I have forwarded them to others. If we are conservative and say that in the U.S. at least 5% of Covid 19 cases show signs of extended symptoms then is it reasonable to estimate there are at least 100,000 people in the U.S. with extended symptoms so far? In the links you provided most of the patients interviewed were fairly young. Do you think that most "long haulers" are under age 50? (I guess the older severely sick people would have died)

If there are 2,000,000 cases of survivors that might be correct. That number probably includes people that died. I'm not sure how the numbers are compiled. Positive tests? Plus there are all the cases that were not tested and the negative people who are or were sick. Hard to say as a result.

Based on the participants in the support groups, it's likely a lot of long haul cases are of people under 50. I am in my mid 60's, so not typical of the support groups. There are around 9,000 members of the two groups. There is some overlap of people that belong to both groups plus some members are from outside the US. primarily Britain. These are the vocal people. Maybe multiply by 10 and you are probably not far off.

 

[pacergal]

Wow - taste buds turned off for 3 months!!!

It was not fun, I could sense bitter and salt on the edges of my tongue only, but food just didn't have any flavor. Didn't seem to lose my sense of smell, but I have congestion still, so??

 

[audreyh1]

I know it’s been touted as a fairly common and even an early symptom, and I’m sure I would notice immediately! But it’s still mind blowing have such long term effects.

At least having some sense of smell keeps from total deprivation.

 

[sengsational]

Antibodies decline quickly. No surprise you are negative three months out. Lots of people that had it, including some with positive virus tests, are negative for antibodies.

In today's MedCram video, Dr. Seheult reiterated that many of his patients test negative, and there's no question they're in the throws of Covid-19. If one understands the disease progression, it's not surprising.

 

[MRG]

OP, Thanks for sharing, I appreciate it.

I know it’s been touted as a fairly common and even an early symptom, and I’m sure I would notice immediately! But it’s still mind blowing have such long term effects.

At least having some sense of smell keeps from total deprivation.

I'm not sure what happened to DW and I, we were both sick all of April, her more than me. We wrote it off as a cold, even though it didn't feel like a cold. DW spent several weeks in bed with severe aches pains and a massive headache. I had the same but milder symptoms.

Sometime in May we both realized we hadn't tasted anything for weeks. We bought were aware it was off, thought it was a symptom of an unusual cold we both had. After we were feeling better we saw our symptoms matched updated lists. I don't know what we had, probably a cold, it wasn't a severe case of what many report. I didn't notice the loss of taste, only when it came back.

We have not been tested for anything and don't plan to unless it's at a future time when it's more available here.

 

[MissMolly]

When my son had COVID he lost his sense of taste and smell for about a week. He said it was horrible. He noticed it immediately. Whenever he ate he said it was like chewing textured water. Fortunately he recovered from that.

 

[harllee]

Does Covid-19 cause a loss of hearing as well as smell and taste? The reason I ask is that DH had a terrible case of flu 2 years ago and lost hearing, smell and taste--all eventually came back but he still has tinnitus.

 

[38Chevy454]

Just want to say thanks to AR for posting the symptoms and timeframe. It certainly does seem to match Covid19 reported symptoms and I believe AR had Covid19 and is thankfully on the mend.
I think the part that I take away is two things:
1. The testing is not very reliable. So actual reported results in most cases are suspect. Although the numbers are some validity for comparisons between locations.
2. Covid19 effects and lingering issues are quite different in people. Medical science has a lot to learn about the virus. Why are there asymptomatic people, short term illness, and long term illness?

 

[Amethyst]

As I've reported in other threads, I learned at a young age (25) that viruses can attack just about anything. Back then, I had what I thought was a heavy cold, and lost my taste and smell (as one often does with colds). But I got better, and the taste and smell did not return except for a very little.

After some months, I consulted a neurologist, who did tests to rule out a brain tumor. His conclusion? Some unknown virus, which gave me the "cold," also attacked my olfactory nerve. Since I retained about 30% of normal taste and smell, he advised me to consider this my new normal, and adapt to it. Which I have. (It never actually got better).

He said viruses can also attack nerves for hearing, sight, and motor control.

Does Covid-19 cause a loss of hearing as well as smell and taste?

 

[Another Reader]

Here is another COVID care program at Northwestern University. More acknowledgement of the problems.

https://www.nm.org/healthbeat/medic...slgM8ThQ7y3WnybfsbOKMqsID99UKGm7c1mK5PsGNLoyU

 

[CaptTom]

I think our understanding of viruses is still very primitive. I suspect that lots of illnesses which have a name, but no clear underlying cause, are the result of viral infections. Fibromyalgia for example. There's no test, just a check-list of symptoms. There's a whole lot to learn between cataloging and naming a condition, and actually understanding the cause.

 

[rodi]

About a week ago Dr. Fauci said that the novel coronavirus made the AIDS virus look simple.

(Sadly, we should note that there still isn't a vaccination for AIDS, though treatment has improved enough that it is not always a death sentence anymore.)

The scientists are still learning all the different ways this virus is spreading - both within our bodies and within the community.

 

[Dicey]

I am a long time fan of AR's from another forum. I joined e-r.org today, specifically to learn the details of AR's experience. After reading all the disclosures, I understood why AR chose to share their story here.

I am pleased by the amount of support AR has received and surprised by the naysayers and complainers. I am glad there are options for them to unfollow the thread.

Since the beginning of this epidemic, when I speak to friends and family, I ask them if they know anyone who has been affected. I noticed AR's absence from the other forum and was saddened and dismayed to learn of their situation. I am glad that this forum can be a safe outlet for AR to share their experience. We can all learn from it. To relax one's vigilance now, especially in light of the surging numbers, could be a fatal mistake.

As a result of AR's experience and information, I have dialed my caution all the way back up, and I am reminding everyone I know to continue to be mindful. AR is by no means out of the woods. The terrific effort they are making to share their story here could help save lives. I am pleased that AR has mustered the fortitude to share their experience. I know it has come at a great cost. I really appreciate the support that most of this forum has shown AR thus far. I hope the few naysayers will simply pick up their marbles and take them somewhere else.

 

[harllee]

Dicey, welcome to this Forum. Please explore all around I am sure there are things you will find very helpful--I know I have. There are a few naysayers here like everywhere, there is an ignore function if they get under your skin too much. I think you will find most people here are very reasonable and helpful.