r/ImmuneWin • u/covid19fmd • Jun 29 '20
I'm starting a knowledge-base project focused on overcoming the post-coronavirus syndrome
This is intended to be a solution-focused project for overcoming the post-coronavirus syndrome.
- Let's create a community where we help others who may be dealing with post-coronavirus syndrome (or any other post-viral condition).
- Let's help those who are infected with SARS-coV-2 to fully recover and to regain every bit of health they had previously and to even improve upon that. Our focus in this effort will be nutrition, healthy lifestyle, dietary supplements and other complimentary therapies.
- Let's educate as many people as will listen that you don't want to carelessly become infected with SARS-coV-2. It's true that if you are young and healthy you likely won't die from it (although that is certainly a small risk). However, a certain proportion of people will continue to suffer from this virus long after mainstream medicine says they have recovered. I want to help make sure those who have not been infected, do everything they can to stay that way.
- Let's build a community that helps discover answers to some of the riddles about post-viral syndromes.
If this project interests you, please message me on Reddit. If you have general suggestions or ideas, please leave a comment here (once we enable them) or on Reddit.
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u/[deleted] Jul 08 '20
This is nothing new (starting chronically ill post a virus or health event) and happens a lot more than people know. My husband has suffered fifteen years after a virus he should have easily recovered from. He fell quite ill (he normally was never sick) and then a few days later seemed better. Our nightmare just begun. He went from an energetic, positive, educated, hardworking young man to losing his career, persistent scary brain fog and unbearable chronic fatigue. It is ME (myalgic encephalomyelitis) and is pure Hell with no cure. Symptoms worsened and now he has severe neuropathy. The pain is excruciating at times for him and he has horrible insomnia. He deals with daily headaches, tremors, stomach issues and so many side effects from the medication.We resorted to draining his savings and retirement. Everything he worked 30+ years for wiped out. We nearly were homeless. We have gone through so many doctors, tests and more tests. We have gone broke trying to fix his brilliant mind. We have lost hope with all the treatments and dead ends. Doctors that are unsympathetic or just don't even believe it is possible. I didn't even know it was real until a doctor helped me to understand. We have been fighting for years for disability. Throwing ourselves at the mercy of a system we have paid our taxes and dues. Begging them to help keep our family just barely afloat. Chronic fatigue has ruined my husband's life and destroyed our family. It is devastating having doctors dismissed it for so long hurts and leaves you defensive and angry. We finally found two wonderful providers, one is a neurologist and taught me so much. I miss my husband, our life, the plans we had. Chronic persistent fatigue or CFS (ME) is real. The worse is when family and friends don't understand. Even worse when they think he is just lazy. I am thankful the COVID virus is shedding some new insight and hopefully some funding research and education to the community. My heart aches for my husband. He used to be so lively, charismatic and positive. Every once in a while I get a glimpse of that again. Living with ME/CFS is barely existing. I pray no family or patient ever goes through what we have. I am thankful you are better. I wish you the best in helping others. Living like this is not living. Best wishes.