COVID-19 What do people with immune deficiency need to do?

Posted by chillywillie @chillywillie, Mar 21, 2020

What do ivigg persons do with immune deficiency? What are symptoms of this corona 19 virus in immune deficiency patients?
Can we go
Out still to get our infusions?
Is gamma globulin tested for this?
Is the ivigg available? Will it help fight off this?
Fevers are not always present with ivigg patients is this same in covid 19?
What treatments do we do if we suspect this?
Is there supplements to take for us ivigg cid persons
That can help protect our health?

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

@jdlogan65

I am a liver transplant patient from Nevada and have concerns getting my weekly labs. I have been using LabCorp. I self quarantine in my truck until they call me on my phone to do my blood draws. I wear a face mask and open the door with a Clorox wipe and wear eye protection. I disinfect my shoes at home and wash my hands and clothes. My mail is disinfected before I touch it. Am I over reacting or is there anything else I can do besides staying at home?

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@jdlogan65- I agree with @becsbuddy I think that sanitizing your mail is a bit overboard. Why not just wear gloves when you open it? Then you can use hand sanitizer after you read what you need to? By the way, how do you sanitize your mail?

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@becsbuddy

@jdlogan65 Good morning. I don’t think you’re being over cautious. Maybe sterilizing the mail is a bit much, but.... When did you have your transplant? Maybe @rosemarya can advise you. She is also a liver transplant patient

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Thank you @becsbuddy, for inviting me to this conversation.

@jdlogan65, Believe me when I say that I understand your concern. Here is what Mayo Clinic has posted for transplant patients - It will give you most of the answere that you are looking for. -Specific questions and answers about COVID-19 for transplant patients -
https://www.mayoclinic.org/patient-visitor-guide/covid-19-faqs/transplant

I applaud you for being extra careful to take care of yourself because you have been down a long frightening journey to get where you are today. I don't think that we can be too careful after transplant surgery, and I don't know whether you need to take all of the precautions that you mentioned. I do think it depends on your comfort level and also any other health issues that you might have, Only you and your transplant team can best answer your specific. Why don't you call them. (PS-I have, in the past, met other recipients who waited in their vehicle like you are doing during seasonal flu season)

Please post your question in the COVID-19 in Transplant Patients discussion where other transplantees will be able to see it and to respond. Another piece of advice from me (10+ years post liver and kidney transplant) is to read thru all of the responses in that particular conversation. I find great comfort and encouragement by knowing that I am not alone with some of the same fears as you have during this pandemic. https://connect.mayoclinic.org/discussion/covid-19-in-transplant-patients/

Will you let me know what you learn about labs? I am due in 3 weeks and am beginning to wonder about that,too.

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@colleenyoung

@chillywillie Great questions. I'm tagging fellow member @sparshall @anniepie @sassykitten93 @xfirerose @ldestella to see how they are managing during this crisis with their primary immunodeficiency conditions and getting intravenous immunoglobulin (IVIG) infusions at this time.

Willie, as you know primary immunodeficiency disorders — also called primary immune disorders or primary immunodeficiency — weaken the immune system, allowing infections and other health problems to occur more easily. So you have to take all precautions and be vigilant about your health. Here is some advice from Mayo Clinic that will help:

- What to do if you suspect COVID-19 https://newsnetwork.mayoclinic.org/discussion/what-to-do-if-you-suspect-covid-19/
- 10 steps from Mayo Clinic’s Infection Prevention and Control team to minimize the spread of COVID-19 https://newsnetwork.mayoclinic.org/discussion/10-steps-from-mayo-clinics-infection-prevention-and-control-team-to-minimize-the-spread-of-covid-19/
- COVID-19: Symptoms that require emergency care https://newsnetwork.mayoclinic.org/discussion/covid-19-symptoms-that-require-emergency-care/

The best way you can protect yourself is to
- Wash your hands. Wash them often and properly (soap and warm water for a least 20 seconds and make sure you scrub all surfaces: the back of your hands, wrists and under the fingernails too.)
- Keep your distance from others, called social distancing.

To find out if you can continue to get infusions, please call your clinic or hospital where you get the infusions. They can tell you want you need to do to get treatment or if treatment is being suspended. I'd be interested to hear what you find out.

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this is really a question---I had malaria for 23 years--will that help protect me from the caronavirus

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@sumtoi

this is really a question---I had malaria for 23 years--will that help protect me from the caronavirus

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@sumtoi Welcome to Connect. We are a group of groups of people dealing with a variety of medical conditions and the challenges that accompany them. We are not medical professionals so we can only offer opinions based on our studies and experience.
But I think we can tell you that nothing published to date suggests that having malaria will protect you from Covid-19, which is caused by a new-to-humans virus.
Have you read or heard something that led you to ask this question?
Sue

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I thought since an antimalarial pill has been shown to be helpful in turning around the recovery for a few individuals that perhaps it produces a response in the body that also affects the virus. Since my course with the disease has run, perhaps my body now has the means to kill the virus. I know the pills attack the larva stage as it tries to get into the red blood cells but I was hoping battling the disease for 23 years has caused my body to develop a killing mechanism of its own that could affect the virus. My father was in the pacific islands during WWII and came home with the disease and his attacks lasted for 22 years. The disease usually quits with attacks in 20-25 years. I acquired the disease in Africa while on antimalarial pills and my attacks lasted 23 years. I don't know what is left in the body after those years, if anything. The disease damages the alveoli in the lungs but mine is relatively minimal and restricted to my right lung. However, I was hoping it engenders antibodies or something that would attack the virus. Something in my body does not do well with vaccines. I wound up in the hospital after the flu vaccine and the same thing happened after the pneumonia vaccine and I was taking antimalarial pills when I caught malaria, so I would not be keen to get a Coronavirus vaccine and was hoping my years with malaria would have stimulated a response in my body that would accomplish what the pills have shown to do on the few people so far. Thanks, Jill

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@sumtoi

I thought since an antimalarial pill has been shown to be helpful in turning around the recovery for a few individuals that perhaps it produces a response in the body that also affects the virus. Since my course with the disease has run, perhaps my body now has the means to kill the virus. I know the pills attack the larva stage as it tries to get into the red blood cells but I was hoping battling the disease for 23 years has caused my body to develop a killing mechanism of its own that could affect the virus. My father was in the pacific islands during WWII and came home with the disease and his attacks lasted for 22 years. The disease usually quits with attacks in 20-25 years. I acquired the disease in Africa while on antimalarial pills and my attacks lasted 23 years. I don't know what is left in the body after those years, if anything. The disease damages the alveoli in the lungs but mine is relatively minimal and restricted to my right lung. However, I was hoping it engenders antibodies or something that would attack the virus. Something in my body does not do well with vaccines. I wound up in the hospital after the flu vaccine and the same thing happened after the pneumonia vaccine and I was taking antimalarial pills when I caught malaria, so I would not be keen to get a Coronavirus vaccine and was hoping my years with malaria would have stimulated a response in my body that would accomplish what the pills have shown to do on the few people so far. Thanks, Jill

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@sumtoi, I doubt that immunity to COVID-19 due to previous malaria infection has been researched or tested. It would be a comfort to know this, but you can't rely on hypothesis alone. I'll also be interested when they better understand who may have immunity to COVID-19 as a result of having been a carrier and/or had symptoms to slow down any "second waves". I believe studies of this are being fast-tracked.

Here's an interesting article and video about
- How the virus that causes COVID-19 differs from other coronaviruses https://newsnetwork.mayoclinic.org/discussion/how-the-virus-that-causes-covid-19-differs-from-other-coronaviruses/

In the meantime, we all have to protect ourselves:
- Stay at a distance of at least 6 feet from other people.
- Wash hands regularly with soap and water. If that's not possible, use hand sanitizer or disinfecting wipes.
- Avoid touching your face.
- Monitor daily for symptoms such as fever, cough and shortness of breath.
- Call your health care provider or local hospital if symptoms develop to see if you should be tested for COVID-19.

Are you able to stay at home and keep a distance?

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@sumtoi Hi Jill - It's important to understand how we form immunity to a virus - once the body mounts an immune response to a sepcific virus, anti-bodies are present, which prevent that organism from reinfecting you. This is sometimes a permanent immunity, other times temporary. And often, the virus will mutate just enough so that the antibodies no longer protect (hence the dilemma with seasonal influenza, and deciding which viruses to use in the vaccine each year.)
Also, and remember that this is changing minute-to-minute, the anti-malarial drug MAY be helpful, either alone or in combination with other treatments. That still needs a lot more testing & study.
So, while it is nice to hope, after suffering from malaria for so many years that something good (eg Covid-19 immunity) could come from it, I don't think there is any basis to hope or believe that you are protected by past use of the medication.
I'm sorry to hear you have a problem with vaccines.
Please stay safe.
Sue

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@sumtoi,- Good morning- I ran across this article that might help you understand immunity to viruses better. Hope that you find it interesting.

https://www.smithsonianmag.com/science-nature/can-you-become-immune-sars-cov-2-180974532/
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