1. < Post-COVID Recovery & COVID-19

I’m SO worried fiance 26 month LONG Covid - declining - ALONE

Posted by karen8 @karen8, Jul 30, 2023

I don’t know where to turn and who to talk to anymore …. He is so sick like so many others on here and we feel so very alone …… his life has changed drastically - he is so far away from who he was …. I do everything I can for him ( pill and doctor management , support, love) . His cognition is declining / gi issues are constant and debilitating / relentless fatigue even after phone conversations etc - many doctors and a Long Covid clinic - no luck - and he doesn’t want to do this another day - his faith is very strong and has kept him going ….. I find myself constantly nervous and I can’t help him get better and nobody really understands … just sharing… anybody else ?

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karen8 | @karen8 | Aug 1, 2023
In reply to @car0 "I’m going out on a limb, here… but I wanted to suggest you keep this in..." + (show)
@car0

I’m going out on a limb, here… but I wanted to suggest you keep this in mind—
Be very selective in your reading—even to these chats. I’ve heard people say “ so what you need to do… is ___, and now I’m cured” or “so much better.”
And I believe. I’m sure it worked —-FOR THEM.
But. If there was a one “thing” or approach that fixed or explained Long Covid? We ALLLLL would have been on it years ago! We are all so anxious to feel better…But I’m just suggesting that if a chatter says “do this” and you decide to try it? Do not become discouraged if it doesn’t work. I’ve written this in another chat, but from these chats I’ve seen threads from people who have gained weight unexplained & others who have lost weight to dangerous levels; had an inability to swallow because of too much post nasal or etc/ people needing help for incredibly dry throat; people sleeping or sleepy all the time/ folks with EXTREME insomnia. Point is— it is all Long Covid, and it is effecting each of us differently— and in a body specific way. Body Specific. That means, as far as I can tell? That each body will have their OWN personal symptoms that need to be dealt with.
(Also why, in my op., drs aren’t getting it. It is not one pill fits all. )
When you get discouraged, reach out.

Jump to this post

Oh for Pete sake ! I just posted a long note trying to explain everything and said what I was trying to say - hit the post button and …. Nothing !! Must have gotten erased - so will try later😬frustrating

REPLY
car0 | @car0 | Aug 1, 2023

I wasn’t commenting on anyone’s post, by the way.
And perhaps I should have clarified. Because she DID ask for suggestions. I just know that during my first while on the chat I was trying numerous things… and then realized not everything will work for everyone. I would have liked the reminder, because you get desperate for ANYTHING to work.

REPLY
aldersage | @aldersage | Aug 1, 2023
In reply to @lindy1965 "Hi, I’m really curious… how is everyone getting diagnosed with microclots? Although I have read so..." + (show)
@lindy1965

Hi,
I’m really curious… how is everyone getting diagnosed with microclots? Although I have read so much about it NOT ONE of my doctors has even mentioned it and I wouldn’t have a clue where I could get this done. Im in MA. I agree, this is not a one size fits all …. I have tried SO many things and nothing is helping the debilitating fatigue, PEM, dizziness, insomnia and all the rest that goes along. I was checked for MCAS and supposedly I don’t need a low histamine diet, although I do take Zyrtec anyway. I tried NAC and it made me feel absolutely horrible as did LDN. I am in this since April 2020 and I live alone and can’t drive for more than 5 minutes on a good day.
It is terrifying. Friends have all given up. Probably think I’m just ‘ depressed’ as my PCP says. I just want to tell my PCP to ‘walk a day in my shoes buddy.’
I agree we should all share what has helped, even in just the smallest of ways but I don’t know of anyone that has recovered. I was wondering if denglish19 would mind if I ask questions? A low histamine diet is super restrictive… did you cut everything out? Plus, there are so many contradictions about certain foods as to whether or not they are high or low histamine. I tried B3 and I had such terrible crashes from it. I would love to know the other things you used. I’m willing to try anything like most of us right about now. Thank you all so much for all he other suggestions and I wish all of you the best. Much love.

Jump to this post

Lindy I got tested for microclots at Medhelp. After a lot of research I also think microclots are the answer to most long covid symptoms as it explains all of my symptoms which were very scary. I am sensitive to meds so took the more natural approach to see how I improve, if I get worse I will do the more aggressive one. I keep taking notes on what people are doing as I myself am a single parent and all of this is very daunting and costly which is why I shared what is slowly working for me as these supplements are widely taken by many without issue and all except one (the antihistimine with is a mast cell stabilizer) is available without perscription. I started slow and did not have a reaction to the Nac or Nattokinase after about a week (feeling worse at first is normal as you are detoxing so I did half dosing then worked my way up). If I stop taking my symptoms ramp up so I know they are working as the really troubling brain and all over pains are lessening day by day. With b vitamins try and find ones that are methylated in case you have a MTHFR mutation. Sounds like going slow is good for you. Little bits of movement or putting your legs up, sitting outside under a tree and in the morning or evening sun. Electrolytes, baby asprin and natokinnase may be a good start. I am not a Dr but this is what I started with and slowly added to. There are nattokinase with lower dosing then you can work up. Good luck..sending my best to everyone

REPLY
karen8 | @karen8 | Aug 2, 2023
In reply to @car0 "I’m going out on a limb, here… but I wanted to suggest you keep this in..." + (show)
@car0

I’m going out on a limb, here… but I wanted to suggest you keep this in mind—
Be very selective in your reading—even to these chats. I’ve heard people say “ so what you need to do… is ___, and now I’m cured” or “so much better.”
And I believe. I’m sure it worked —-FOR THEM.
But. If there was a one “thing” or approach that fixed or explained Long Covid? We ALLLLL would have been on it years ago! We are all so anxious to feel better…But I’m just suggesting that if a chatter says “do this” and you decide to try it? Do not become discouraged if it doesn’t work. I’ve written this in another chat, but from these chats I’ve seen threads from people who have gained weight unexplained & others who have lost weight to dangerous levels; had an inability to swallow because of too much post nasal or etc/ people needing help for incredibly dry throat; people sleeping or sleepy all the time/ folks with EXTREME insomnia. Point is— it is all Long Covid, and it is effecting each of us differently— and in a body specific way. Body Specific. That means, as far as I can tell? That each body will have their OWN personal symptoms that need to be dealt with.
(Also why, in my op., drs aren’t getting it. It is not one pill fits all. )
When you get discouraged, reach out.

Jump to this post

Thank you for all the comments and suggestions - I/we appreciate any recommendations and I realize it certainly is different for we every person. I posted a long comment yesterday but managed to erase it - so I’ll try a quicker note!
He was never hospitalized - April 2021 he had your basic bad flu - no big deal . Approx 3-4 weeks later is when it all started changing.
His neurological deficits are quite severe ( as in I leave notes for him to brush his teeth. Deodorant ,water in coffee pot)forgets everything all the time - did neuropsych. Evaluation( 5 hour test) back in January and showed definite decline in executive functioning and memory . He barely drives because he is not comfortable - if he has to - even five minutes away , he will plan out his route . We have tried many things - ivermectin/LDN/Atorvastatin/fluvoxamine/prednisone/ Wellbutrin/ stimulants/ now have him on Aricept !supplements ( Quercetin-Zinc-NAC - MitoQ -omega)
His GI issues are awful - in bathroom easily 7 x a day - I can always hear his stomach make noises - seen gi doctor.
His long Covid doctor is through UF Shands - done many tests but pretty much sends us to this or that doctor. His cardio crp numbers are high as is d-diner —— however this does not seem to concern anyone even though it points to inflammation. She has been more concerned with his depression and anxiety and having him seen about that . Of COURSE he is ! Ok so I did write too k uh but as all know - there is so much involved and everybody is different and unless you have a loved one with it - people think you are really exaggerating ….
“ so, gosh can he not even do anything ?”
We are in our 50’s and at a total loss —— I miss him - he misses him - he has gotten to the point he thinks this is how he will always be …. Very disheartening to see hm day in and out …. Thank you for reading , it helps. Best to all out there🌺

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1 reply
karen8 | @karen8 | Aug 2, 2023

Oh I didn’t even mention the obvious serious fatigue. - even conversing on phone - loss of muscle mass - etc

REPLY
britnoor | @britnoor | Aug 2, 2023

I too have been dealing with long covid for over 1.5 years. Along with this I lost my beloved brother and have other medical problems. I have gone through the terrible fatigue, depression, insomnia and pain of it all. I eat simple but healthy foods. I am at the point now where I am feeling that I am turning a corner. Little by little at a slow pace. I cannot do many things like before but I will as I will never give up. Since a kid I have had a chronic lung disease and have had this strong will to deal with this. Please do not give up hope and know things can get better. I too have that special person in my life who is supporting me through this horrible long covid Keep strong and things will get better Bless you and your fiance.

REPLY
car0 | @car0 | Aug 2, 2023
In reply to @karen8 "Thank you for all the comments and suggestions - I/we appreciate any recommendations and I realize..." + (show)
@karen8

Thank you for all the comments and suggestions - I/we appreciate any recommendations and I realize it certainly is different for we every person. I posted a long comment yesterday but managed to erase it - so I’ll try a quicker note!
He was never hospitalized - April 2021 he had your basic bad flu - no big deal . Approx 3-4 weeks later is when it all started changing.
His neurological deficits are quite severe ( as in I leave notes for him to brush his teeth. Deodorant ,water in coffee pot)forgets everything all the time - did neuropsych. Evaluation( 5 hour test) back in January and showed definite decline in executive functioning and memory . He barely drives because he is not comfortable - if he has to - even five minutes away , he will plan out his route . We have tried many things - ivermectin/LDN/Atorvastatin/fluvoxamine/prednisone/ Wellbutrin/ stimulants/ now have him on Aricept !supplements ( Quercetin-Zinc-NAC - MitoQ -omega)
His GI issues are awful - in bathroom easily 7 x a day - I can always hear his stomach make noises - seen gi doctor.
His long Covid doctor is through UF Shands - done many tests but pretty much sends us to this or that doctor. His cardio crp numbers are high as is d-diner —— however this does not seem to concern anyone even though it points to inflammation. She has been more concerned with his depression and anxiety and having him seen about that . Of COURSE he is ! Ok so I did write too k uh but as all know - there is so much involved and everybody is different and unless you have a loved one with it - people think you are really exaggerating ….
“ so, gosh can he not even do anything ?”
We are in our 50’s and at a total loss —— I miss him - he misses him - he has gotten to the point he thinks this is how he will always be …. Very disheartening to see hm day in and out …. Thank you for reading , it helps. Best to all out there🌺

Jump to this post

I’m back. Just to let you know? There was a study donqe in 2021– most of the doctors seen for long Covid focus on depression/anxiety. It makes me so mad. I just read a paper from Mt. Sinai Long Covid clinic. They are my go to clinic, for a variety of reasons ( ask me later). See the photo I (prob illegally) included. This is from a paper published telling practioners how they must treat LH pts.
Interesting, huh?!?
They also say: send Pt to a clinic specializing in Long Haul.
It really seems you may benefit— since you PCP is doing it WRONG
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