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3 years post covid with Guillian Barre syndrome.
Hi. I’m desperate. I hate my life ever since I got severe Covid in 2023. I developed Guillian Barre syndrome and it comes back every time I get a virus. I’ve been hospitalized many times and get IVIG treatments for 5 straight days. I am so weak. I can barely walk up three stairs, my arms are too heavy. I pass out. I can’t regulate my body temperature and pass out and puke in the heat. I can’t stand or walk for more than about 45 minutes- enough to hold onto a cart and go for groceries. I swallowed my pride and got a handicap parking pass. I use a cane or walker if I don’t have anything to hold onto. I used to work 12 hour days in the Operating Room and Central Sterile. I miss my job greatly. I was a youth group leader, very active in church and volunteered a great deal. I miss my life. I have tried to stay positive and I do realize that I am very blessed compared to many. Every time I want to give myself a pity party I literally count my blessings. But I’m being human and real here. I’m sooooo tired. If anyone has ANY ideas or a provider who says more than “It’s a time issue “ please let me know. I am just done.
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Hello, I am also a long haul Covid since 2022, it has affected every organ in my body other than my lungs 🤯.
While I wished I could give you positive feedback I can't. The only thing I can encourage is take your pity party days!!!! It's (to me) a rejuvenating feeling the next day and you gradually start feeling grateful for waking each morning.
Don't get me wrong, I, like you HATE my life as it is today but once you realize that person you were will never be again, some how gets easier.
Actually, disregard that, it really sucks!
Take your pity party and own it, we deserve it ❤️
Praying 🙏 for your recovery
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1 ReactionCovid has messed up a lot of people and drs and hospitals and the government do not want to admit it. I am 80 yrs old was or so i thought in pretty good health until i took the pfizer covid vaccine lst one my hands started to feel clumsy went to pcp he ordered a nerve conduction test that came back slight carpal tunnel so i started wearing the braces, then 2nd pfizer covid vaccine exactly two weeks later had 2 tia's. then on 1/21/22 husband came down with covid, yes he was tested. on 1/25/22 i came down with covid and it has been all down hill for me from there. seen 4 neurologists, 1 rheumatologist, er visits they just send me home, urine test shows arsenic poisoning, well water tested it is fine, husband tested he is fine, and no he is not poisoning me. bbl getting super tired
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1 ReactionMy step daughter had a similar story right at the beginning of the pandemic before we had Covid tests with Guillain Barre and weakness and fatigue chronic remitting symptoms off and on-mostly on, etc. She has done all sorts of infusions, etc. The thing that helped her the most was to do “brain training”. Sounds like hocus pokus but she is feeling stronger and having less fatigue and was recently able to do some short part time work. She used DNRS, an early program of this type, but there are many brain training programs out there now with different styles to consider.
Personally, I am currently getting benefit from using Valacyclovir 1 gm three times a dat for 7 days followed by 1 gm twice a day long term. So far getting really good benefit! This is likely treating viral persistence or possibly another viral reactivation. There are multiple case reports of this working with either Valacyclovir or Acyclovir. Look it up (web search: “long covid and Valacyclovir”or acyclovir) and see if your doctor is willing to prescribe it as a trial. If it helps like it has for me hallelujah! If it doesn’t help, well then you know. No real side effect issues so its a safe shot in the dark to test out.
Wow, I'm glad you are responding positively. I always considered acyclovir being related to zosters. Every time I've had meningitis (viral) they put me on it for broad coverage.
I recently saw a western medicine doctor that started me on a high dose (compounded) Ivermectin due to continued COVID symptoms. I'm praying that I get some relief.
Thank you for sharing your story