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There are now two cases in my town in New Jersey. I'm all ready to shut myself in for about two months. My real fear is my 75 year-old mother, who is a smoker (making her one of the highest risks) and is with me 3-4 days per week. She's with my sister the other 3-4 days, who lives a few miles away and has a 5 year-old.  She thinks she can beat this thing by spraying lysol on everything and says she's not allowed to work from home. I've been fighting with her since yesterday about not wanting to send my mother back over there while her kid is still in day care 3 days per week and with her father doing who knows what on weekends. 

After the Tom Hanks announcement last night and the NBA players catching it, along with the two in my town of unknown origin, I've gone from being cautious to very alarmed. 

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@MTRJ75 - my M-I-L is in her 80's, has lymphoma and anti-immune disease. She is on house arrest. Neither her nor her husband leave the house and they only allow certain people in. If your mother stays with your sister then I believe your sister can stay home and not go to work, that is why they have new regulations in place for employers to accommodate that. I would be diligent in making sure your mother is not exposed to the virus ( to the best of your abilities ). I know of other high-risk people that have been told to stay in the house by their doctors. 

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@Pistol Ironically if she stayed home, there would be no reason for my mother to be there to watch the kid. I'm planning on doing all grocery shopping on line with deliveries. Thankful that's available in my area. 

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I know a pregnant lady taking her little 3 year old and husband who is sick to Sea World. She wrote out a paper declaring that God will keep them well. As a christian, I find this ludicrous. I mean if you want the virus the best place to go is probably Sea World. I don't know what to say to her without sounding mean. 

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Orlando is going to get ugly. They haven't closed the parks yet, but I expect them to. 

Her approach is foolish. Good helps those who help themselves. She is not helping herself. 

Most likely she didn't buy travel insurance and that is driving the decision.

I hope airlines and the parks allow people to re-book without fees. The corporate hotels should do the same. Franchised hotels and small hotels are going to have trouble getting through this. Their employees are going to have no income. Our local food banks are going to be bare because of it. Our service based economy here in Florida is very unstable. It was very rough after 9/11, but I think this will be worse.

I hope I am wrong.

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@toomanyproblems

I think it's good for us to try and remain as calm as possible. I had a lot of people such as friends and family, tell me to chill out, though, when this outbreak started, and now those people are understanding why I was concerned to begin with, as we watch this spread. So — I very much so understand your concerns and just want to say I don't think you're silly for being worried. I too, am worried. 

I am optimistic however, and think we will be OK, even if we do get it, but I also think it's important to be a realist and be extra cautious.

Coronavirus is far more serious than the flu, and the flu made my dysautonomia a lot worse last year. 

Take extra precautions as best as you can, avoid crowds etc, and try and be as healthy as possible! We'll get through this. 

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5 hours ago, Scout said:

I am optimistic however, and think we will be OK, even if we do get it, but I also think it's important to be a realist and be extra cautious.

Yes - I agree! And I am not afraid to get the virus, I expect a flare but no complications. What I am worried about is to pass it on to someone else. Even if someone is not in the risk group or lives in an area not yet affected ( I do ) - it is our responsibility to take ALL precautions to prevent the spread of this virus. To those that are at risk it is a matter of live and death. 

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I received some very good tips from someone who currently is under quarantine for corona virus and I would like to share for all those who are in the risk group: 

- stock up an everyday needs, food and medications for at least two weeks

- make a room close to the main entrance ( or even the hallway ) a "contaminated" area where you can allow visitors to enter ( if absolutely needed ). This way you can be assured that the rest of the house is clean. Wear a cover-up when entering that room and take it off before leaving that room. Clean areas that were touched with antiseptics and ask all visitors to wear a mask. 

- start now to take immune supporting supplements like Vit C and Zinc. They can make the course of the flu shorter. 

- have a water purifier available ( if needed ) to assure availability of hydration at all times and drink, drink, drink. 

- Be in close contact with your PCP and have protective equipment such as masks and gloves on hand in case you need to go to hospital or call the ambulance ( to protect health care providers ). 

Even if not in the risk group - please stay home if you get sick. 

 

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10 hours ago, Scout said:

@toomanyproblems

I think it's good for us to try and remain as calm as possible. I had a lot of people such as friends and family, tell me to chill out, though, when this outbreak started, and now those people are understanding why I was concerned to begin with, as we watch this spread. So — I very much so understand your concerns and just want to say I don't think you're silly for being worried. I too, am worried. 

I am optimistic however, and think we will be OK, even if we do get it, but I also think it's important to be a realist and be extra cautious.

Coronavirus is far more serious than the flu, and the flu made my dysautonomia a lot worse last year. 

Take extra precautions as best as you can, avoid crowds etc, and try and be as healthy as possible! We'll get through this. 

Hi Scout,

The panic of the last two days is not where I am. I've been quietly preparing for at least three weeks because looking at reports from overseas, I could see it could be bad here and that I was at extreme risk if I get it. I've done what I can and so now I will wait. Stay safe and try to flatten the curve for the sake of yourself and everyone else.

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Many of the precautions are circulating widely and now known to most people interested. In addition here are some facts as we know them right now for the coronovirus:

It can survive in/on:

Air - for up three hours

Copper - for up to four hours

Cardboard - for up to 24 hours

Plastic and stainless steel - for up to three days

Of course factors such as humidity and temperature will affect its survivability. These figures are under favorable conditions.

Since I've been thinking about this for a while, I've been honing strategies to minimize exposure from surfaces like leaving my mail in the box for 24 hours and leaving non perishable grocery or other bought items in the hot car for a while before re-touching them to bring inside. You get the drift and can add and modify as needed. We can wash hands and use sanitizer and wipes all we want but if the items we touch after are contaminated we'll just recontaminate our hands. Spread can be minimized by paying attention to what specific items we're handling and touching that are contaminated, thinking of how long they may be contaminated and ways to wait until they are safe.   

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On 3/9/2020 at 2:22 PM, KiminOrlando said:

I don't think dysautonomia is a significant complication to Coronavirus. It will be a pain, just like when we get the flu and it will take a month to get over, but personally, I don't see dysautonomia alone as a higher risk for mortality. 

 

For people with dysautonomia alone, I think it could be a longer recovery both from dysautononmia (which could flare up) and coronavirus.    But a lot of people here have other conditions. Hope everyone stays safe.

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How much does Florinef depress the immune system?  I have gotten conflicting information from the internet versus my doctor.

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How is everyone doing that was on this thread?  So far, I'm okay and hunkered down.  My new functional med doctor said if I get the symptoms, he will call out Plaquenil and Azithromycin for me.

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Hello @sue1234 - I am glad you are doing well. We are fine where I live, in WV. We were the last state in the US to have positive tests, and so far we have 9 people testing positive, all in cities near other states and all contracted after traveling to other states. Our schools, churches and other businesses are closed, no gatherings and restaurants only serve take-out. Everyone stays in the house - I am glad for this. We are a state with a large senior population and some areas, so I am glad we can protect them by taking precautions serious.  - We have a 15 year old daughter and she is kept busy with all of her school work. We now follow a routine to incorporate school time and rest time into our day. It is rather fun!!! 

I hope everyone stays healthy and is careful. No doubt this will be over some time and we can all come out of our cocoons!!!

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On 3/13/2020 at 11:51 AM, toomanyproblems said:

Since I've been thinking about this for a while, I've been honing strategies to minimize exposure from surfaces like leaving my mail in the box for 24 hours and leaving non perishable grocery or other bought items in the hot car for a while before re-touching them to bring inside. You get the drift and can add and modify as needed. We can wash hands and use sanitizer and wipes all we want but if the items we touch after are contaminated we'll just recontaminate our hands. Spread can be minimized by paying attention to what specific items we're handling and touching that are contaminated, thinking of how long they may be contaminated and ways to wait until they are safe.   

A friend of mine gave me a great idea for shopping yesterday.  We live in a very cold area - in fact we are supposed to get 6 inches of snow tomorrow.  So our cars aren't hot and even having the heat on in the car doesn't help because it gets cold so fast.  Her suggestion was to bring gloves with you to the store, preferably disposable gloves.  You can still get disposable gloves at Amazon.  They don't need to be medical gloves, just something to wear over your hands.  Put them on right before you go in the store, throw them away before you get in your car.  Once in the car, use sanitizer and then of course wash your hands thoroughly when you get home.  If you can't get disposable gloves, wear winter gloves through the store.  You would still take them off and put them in a pocket until you get home or better yet, on the floor of your car.  You can wash them when you get home.

Even with gloves, you will still need to wipe down your groceries, etc.  But the idea of the gloves is that they remind you not to touch your face!  They have blue, orange, black colors available and anything colorful will work.  Nothing is 100% naturally, but the main danger is touching your face in public, so anything that helps with that, will, hopefully keep us safe.  Best wishes everyone!

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I am a bit paranoid especially the cases of infected people are increasing. And sometimes, overthinking brings a psychological effect in our body. Yet we should strictly follow the protocols of the government, keep a healthy body and always wash our hands properly. We can battle this.

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I hope everyone is staying safe.

It's upsetting to see how many cases there are out there. I had a bad feeling this would happen, and I guess it did. But I still have hope.

Please stay safe everyone. We will get through this.

Self-care and take things one day at a time.

Sending virtual hugs.

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Hello All,

I am very interested in the idea that since the virus interacts with ACE inhibitors, and ACE inhibitors are suspected to be involved in some kinds of POTS, that the coronavirus will have unique effects in POTS patients. I am not saying for ill, necessarily. For all we know, Coronavirus could function as an "upgrade package" that updates the DNA of POTS patients, reducing the severity of their illness! Or we could just be immune to covid!  

Here is one study on POTS and ACE. I am just posting this to say that ACE is involved in POTS: 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3050076/

Here is one a Youtube video saying that Coronavirus has something to do with ACE: 

https://jamanetwork.com/journals/jama/fullarticle/2763803

This is an important thing to watch! I believe there is a good chance we will learn something new about POTS from the way Covid and POTS interact.

In the meantime, I have my own covid prophylactic treatment program of zinc, vitamin C, brocolli sprouts, sleep and regular walks in the sun!

V/r,

Green 

 

 

 

 

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Yes Vit C and Zinc is needed to boost our immune system, plus nutritious and still balanced diet. As years go by, peoples' lives are deteriorating.

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I wanted to share my experience. I am recovering from presumed Covid infection. I was hospitalized for 4 nights for shortness of breath. Tested negative (however MDs believe it was a false negative- up to 30% tests may be false negatives I was told). I was off all POTS meds and was only struggling with some daily fatigue before infection but this brought back all of my symptoms full blown. It has been about 4 and a half weeks since the hospitalization. First 3 weeks were real struggle. It’s hard to feel so sick and have to be isolated. Thankful for having an area of my house I could quarantine and a nice husband who would slide food in the door and run. And for a sense of peace and strength that I can only say that God provided. But I have been off all inhalers for a week now, breathing much better, and able to sleep without being totally propped up anymore. But man this thing throws your nervous system for a loop. I am still very limited, can’t stand for more than a couple minutes, activity is miserable. But seeing small improvements week to week. So as scary as all of this is, and as frustrating as these setbacks are, I wanted to encourage anyone else out there who gets infected that recovery might be slow but each week better than the last in small ways. I’m an “essential worker” and a bit worried about my job status/future if it takes me a couple months to get back on my feet (literally). Also in the past when I first got POTS and had so many totally bizarre and scary symptoms I remembered that it felt so strange that the world around me was still the same but I was struggling so much. This time with my recovery it feels like everyone is dealing with something strange and uncertain too. I just hope and pray that I can get to a level of functionality that I can take care of my kids & spouse if he ever became ill. It just blows my mind that so many people can be infected and never develop or only have mild symptoms. We live in a relatively densely populated area of the US and hoping to see some plateau or decline in cases soon. 

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@Hippopotsamus thank you for sharing your story and I hope your recovery will last and speed up! What you are describing confirms my thoughts that dysautonomia does not place us in the high-risk bracket with a higher mortality rate, but it does place us at higher risk for complications in recovery due to triggering the POTS symptoms. 

Since you were doing so good and were able to go off your meds before the infection I am sure this is a major set-back and comes with a lot of frustrating experiences. Just remember that slow and steady is the way to go with conquering our symptoms and every minute on your feet brings you closer to being well again.  Get-well wishes and keep your head up 😉🙃😘

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I think that there is a good chance that those of us with with POTS caused by an ACE2 deficiency are coronavirus resistant since coronavirus infects cells by binding to the very thing that is broken in us.  The outlook might even be better for those that are taking Losartan to treat their ACE2 deficiency since that is a med that is currently being used in clinical trials as a coronavirus treatment. 

 

Having said that though, I am not taking any chances.  I am staying as quarantined as possible until a vaccine is out.

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