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

Hi there- I’m so sorry to hear about what you and your fiancé are experiencing. It’s so difficult because the medical system isn’t set up for chronic conditions like long COVID. I both have symptoms of long COVID and I had chronic pain conditions before this, so sadly I’m used to this runaround and frustration but it never gets easier =(

And ironically, the long COVID clinic near me does not have a good reputation, and that’s coming from my own care team.

There are other things you and your fiancé might be able to try on your own or with support from a physician.

Are you able to share what your fiancé has tried so far and their most limiting symptoms?

Others might be able to chime in with things that have worked for them.

Also, given what you’ve shared about how all this may understandably be impacting everyday activities and mood , a pain rehabilitation program might help if there’s one near you. That can be a whole other rabbit hole to fall into though, and is a long process, but it’s something to consider. You can also incorporate elements of it into your own treatment on your own.

I’m so sorry. I know neither of you care to hear this, but he’s lucky to have you.
I don’t know if this would help but here are my two inputs:
1. Has he seen an immunologist
2. If you can—if— contact Mt Sinai in NY, their post Covid program. Talk to them about what is going on. They don’t do telehealth, so here’s the caveat: IF you can get him there physically? That’s your chance.
They are the one clinic that I’ve seen do aggressive treatments and trials. I’ve been involved w/ John Hopkins, but don’t have as much interaction w/ them.

Impossible illness calls for impossible tries. I’m so sorry. I wish I could personally help… but I’m housebound w/ my long Covid.
Let me know…?

I'm so very sorry to hear this and I wish your fiance a full recovery. It IS possible. You are welcome to DM me if you'd like.

He MUST be on an anti-inflammatory diet strictly and also eat LOW HISTAMINE foods. You can research MCAS (mast cell activation syndrome) for information. It's a similar protocol/diet that is needed. There are people who have healed themselves -- you WILL NOT get the information through the western medical system even if you visit every specialist in the country. The system is set up to only look at symptoms one by one. Long haul Covid must be treated at the root cause. Getting symptoms under control is not complex -- an anti-inflammatory diet and LOW histamine foods are absolutely key. Plus B-3 (niacinamide, non-flushing, 500mg x 3 daily). I can offer more but these 3 things alone will create HUGE improvements after just a few weeks. I wish you both all the best and wish him a speedy recovery.

Very Sorry, he is lucky to have you to help him through this. I agree with the above post, if you share what he has tried it can help others add or give some advice about what has worked for them.
I have microclots and started on
-NAC with Nattokinase (away from food am and pm) (Nac is 600 mg)
-b vitamin complex (I need a methylated form so if you dont know Id get that to be safe)
-Ketotifin (antihistmine) 1mg I take before bed because it makes me drousy
-baby aspirin
-Quercetin and bromelain tablet once a day
-electrolytes (I like the cure brand bc they dont have all the added ingredients
-I have also just heard that pine needle tea or dandelion leaf and root tea is good
I also agree about a good healthy diet without preservatives, low gluten, ect... just eat as healthy as possible
other things that can help are intermittent fasting, ending a shower with cold water, box breathing and getting out in nature to ground (in the ocean if you are close) or in the forest to sit next to a tree.
Its not easy but so many are working through it and finding answers, keep the faith. Sending my best

Thank you so very much to those who have responded ! I will post more but have not been able last few days .
Empathy goes a long way and I did not expect to hear back right away from anyone 🙂

No worries; for what it's worth, you're not alone and you can tell your fiance there are others of us out here 🙂

It occurs to me a lot of these suggestions are things you may be able to start trying on your own. For example, the NAC 600 mg you can get over the counter, and it's being researched for use in long COVID. Even if it takes a while to figure out next steps, hopefully the two of you may be able to keep up hope and come across something you might want to try next.

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.

aldersage Who is your doctor?

There is a belief that microclots are the underlying cause of long covid. There are only two or three microscopes in the country that can see microclots. I think these doctors are on to something. I am getting treatment through https://medhelpclinics.com/service/long-covid-clinic. Treatment is similar to aldersage above but with additional medications for more extreme cases. They tailor the protocol to the patient. Good luck and God bless.

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.