Almost dead from Long COVID! HELP!!!!!

Hi
After experiencing long Covid for a year I can relate to your situation and feelings. At this time I have recovered 90% and the following, I think, helped me on my journey.
- GOOD food (no sugar or alcohol)
- consistent moderate exercise (don’t over do it)
- sleep as much as you want but force yourself into a regular daily routine.
- yoga (restorative especially) Good for your body and sole.
Hang in there as it will pass.
T

I am over a year in too and have found that it comes and goes and it really doesn’t seem to matter what protocols I use. The mucus I cough up has changed from clear and frothy to white, thick and sticky. Trelegy seemed like a miracle cure for about 6 weeks, then the cough and fatigue came back with a vengeance. This week I am starting a steroid pill along with twice daily nebulizer breathing treatments, once a day Trelegy and cough syrup and albuterol as needed. I take a Benadryl at night. I am so done with this.

I have had long Covid for almost 2 years too. I feel your pain. It has been a journey. I agree with Tomtom75. I have done the same. It is so important to get into a routine, start with 10 mins a day of exercise for 3 weeks, then increase time. I was told by UNC Covid clinic. (Start with walking to mailbox or around your place) Eat well, nap daily once late morning and again mid afternoon, 30mins-1 hour. Listen to your body, some days you can’t do much, others follow a schedule. Pace yourself. Very slowly you will feel better. I needed a mental health therapist too. Take B12 supplements, multi vitamins.
My case, Epstein Barr virus was reactivated, so I am taking Valtrex, twice a day 500mg. And K Pax immune vitamins also. I think it is helping. Hang in there. Find one thing a day that makes you feel happy and write it down and put in a jar. Read them when you feel like shit. Anything, like it makes me happy when I see a beautiful flower 🌺 I appreciate the little things now. Try to socialize a little too, Good luck.

So sorry yhat you are suffering without helpor answers' Being bedridden makes it almost impossible to gt help or answers. My guess s you have active virus (es), which need to be treated, Who is taking care of you? My opinon is you should be hoptalized for dabnoses and treatments. Do you have a priar physcan who can helpaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa/ aor a family ember who can help? Have you conacted Mayo for a virtual visit for dagnoses and perhaps leadng to hospitalization? I wish you support, help, answers, and treatment. All the best.

My heart breaks for you. I’ve had it for six months and my issues are brain fog, memory issues, and fatigue. I can’t imagine having your symptoms for so long.

I hold onto hope because there is ongoing long Covid research. I’m part of the UIC/Mayo study ( I think they loop in Harvard also). From what I understand, they’re defining testing protocols. They’re exploring tests for multiple paths of systems- neurological, digestive, immune, cardio, etc. all those will move at different rates depending on progress. They can then define protocol and testing for clinical trials.

At my six month check in, they added a blood test for cortisol levels and an EKG. They’re also sending me for psych evaluation since the disease causes stress which can exacerbate the disease.

So I see things moving. I read an article saying the economic impact is lost productivity to long Covid with be $3 trillion dollars in the US for next year. I hope that leads to more research funding. I imagine most researchers and companies are focused on understanding new variants and vaccines- that’s where the money is at today.

I think of long Covid as the early stages of the AIDS epidemic when the medical community and people were just trying to understand what it is and how to identify it.

I believe, as a business person, that when long Covid is understood to be a real thing that can get an official diagnosis, doctors will be happy to treat people and companies will be happy to invest in R&D to treat it. It’s all a matter of resources and time.

That’s what gives me hope to fight every day. I believe science, AI, global organization, and our grass roots efforts will provide us relief.

To clarify, UNC recommended the exercise and nap? I’ll try it.

How did you come to realize you had EBV? Did you have it before?

Do you think you have long Covid and EBV? Or just EBV? I’m going for an EBV test to see if it’s a factor in my symptoms.

What have you pursued medically? I had a friend who got an article written about his long covid which focused on targeted care in his area.. How have you been diagnosed / treated? Good luck

I can appreciate what you’re going through! Like you, I am tired of being sick and I’m tired of just being tired all the time. My experience with long COVID isn’t nearly as rough as what you are experiencing. But I have had doctors yell at me saying they don’t know what’s wrong with me and that they cannot help me. I’ve been hospitalized 8 times since February of this year. This last time I heard a doctor say what is this woman doing here —she’s not sick! And yet my blood pressure continues to spike to 220/180 for no apparent reason.
What are we long haulers supposed to do? I’ve had dozens and dozens of tests, scans, mri’s done this year. And nothing abnormal shows up—until it does and I’m back in the hospital. It’s exhausting. As they say, we are not in the same boat but we are in the same storm.
Hopefully someone somewhere will find the trigger that causes our bodies to overreact and ultimately cause our many physical responses to the virus.
Hang in there.

This is just horrible. Im so sorry.

Im new to post covid, hoping Ill get better sooner than later. Im so fatigued just thinking is exhausting, let alone moving. Sore throat and headache ongoing. Tired but sleep problematic.

Doing more protein, zinc etc. veggies.

Not sure how one viral disease can cause so many different and terrible and longlasting problems. I had Hep A long ago and while i was fatigued for months it was nothing like this?

Makes one wonder if really this disease occurred in nature and not a lab.

@stevieray I am sorry to hear you have been feeling so sick for so long. While we are not doctors, we are here to support you. I can see this is your first time posting. Would it be possible for you, if not too taxing, to tell us a bit about yourself:
1) when did you fall sick
2) how bad was your original infection (e.g, were you hospitalized)
3) what did the doctors say back then - was there any lung, kidney, etc, damage
4) how has your condition evolved over the last 2 years?
5) you mention you have mucus drainage and breathing issues - did you have lung damage from the virus, asthma or some other respiratory condition?
6) have you been able to eat all this time - being bed-bound would certainly affect appetite as well as muscle mass, which could result in losing weight, especially over a long period of time - would you mind telling us what your weight was and is now (I know this can be sensitive).
7) have you been able to seek help for your issues? I can relate to the fact that when the fatigue is so severe seeking medical help itself becomes challenging, but I and others have found great work-arounds - like at home blood draws, televisits, etc. I am sure others will chime in too.
8) Finally, and probably most importantly, what is your living situation - do you have family, dependents, friends, community... which state are you based in, in case anyone can recommend good clinics, etc,