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

Posted by Anonymous303059 @anonymous303059, Nov 2, 2022

I’ve had long Covid for almost 2 years I’ve lost over 70 pounds and been in bed the whole time because I’m so tired I can’t get out of it! My voice is gone from mucus drainage I can’t breathe, I can’t think and at times I think I’m going crazy! I’m just give out! Any suggestions would be greatly appreciated😢! Thanks

THIS IS NOT A WSY TO LIVE LIFE!!!

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

@ericy210

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.

Jump to this post

Hi,
Yes UNC long Covid clinic and chronic fatigue specialist at Nova southeastern U, both recommended naps and tapering exercise, pace yourself. And all my other recommendations.

Friends were asking if I was tested for EBV. At first I didn’t even know what that was. I looked it up. Then realized Since I had Mono in college, which is caused by EBV!! I probably had it. EBV has been latent in my body for 34 years! Crazy. Until Covid reactivated it. Dec 2020.

Then asked for test, finally chronic fatigue specialist agreed to do them. EBV tests were positive!
They put me on Valacyclovir 500 mg twice a day.

Covid reactivated my EBV( I got from mono 34 years ago! ) And that is why I think I got Long Covid.

I have long Covid because I still have my my Covid symptoms for 23 months, fatigue, migraines, tinnitus, head congestion.

I have EBV antibodies which shows I had it. ( mono 34 yrs ago) . Right now I test negative for EBV virus but Covid symptoms are not going away. I think valacyclovir is helping VERY slowly, I went a year and half with no suggestions from Dr. Or explanation as to why I had long Covid, so if anything it brings me hope.
You have to be your own advocate I have learned.
Best wishes.

REPLY
@julesmango

Hi,
Yes UNC long Covid clinic and chronic fatigue specialist at Nova southeastern U, both recommended naps and tapering exercise, pace yourself. And all my other recommendations.

Friends were asking if I was tested for EBV. At first I didn’t even know what that was. I looked it up. Then realized Since I had Mono in college, which is caused by EBV!! I probably had it. EBV has been latent in my body for 34 years! Crazy. Until Covid reactivated it. Dec 2020.

Then asked for test, finally chronic fatigue specialist agreed to do them. EBV tests were positive!
They put me on Valacyclovir 500 mg twice a day.

Covid reactivated my EBV( I got from mono 34 years ago! ) And that is why I think I got Long Covid.

I have long Covid because I still have my my Covid symptoms for 23 months, fatigue, migraines, tinnitus, head congestion.

I have EBV antibodies which shows I had it. ( mono 34 yrs ago) . Right now I test negative for EBV virus but Covid symptoms are not going away. I think valacyclovir is helping VERY slowly, I went a year and half with no suggestions from Dr. Or explanation as to why I had long Covid, so if anything it brings me hope.
You have to be your own advocate I have learned.
Best wishes.

Jump to this post

Thank you. Good stuff to ask my doctor about.

REPLY

son got covid 19 ..had it months ago and just tested positive again. WHAT DO I DO NOW??????

REPLY

I have the post nasal drip from hell. I hear you! My throat has been killing me for eight solid months. My new doctor put me on Azelastine. The Azelastine is the ONLY med that has helped and it's helped a whole lot! You might want to ask your doctor about Azelastine! I've had severe GI symptoms with long Covid to the point that I thought I couldn't stand it anymore. The GI symptoms are getting better, but it took a solid year.
I certainly hope you feel better soon and get some desperately needed relief. Ask your doctor about the Azelastine, really! Game changer for me!

REPLY

I’ve had long term Covid since February 2022. I had it in my gut and unfortunately it’s made my medical conditions so much worse.

I am in pain through my abdomen constantly. I hardly ever want to eat because it is beyond debilitating. I sleep most of the time, or I am super emotional from the pain. I find myself crying at the weirdest things.

REPLY
@margaretob

son got covid 19 ..had it months ago and just tested positive again. WHAT DO I DO NOW??????

Jump to this post

Call his dr. See if he will prescribe oral medicine, pax….Pzifer drug. Has to be within 5 days of testing positive.
When I got it again, thankfully it was not as bad and more importantly did not make long Covid symptoms worst, my biggest fear. I think all the vaccines and boosters and natural immune helped.

REPLY

I have not read anything at all on what I am experiencing, but I will share anyway because it is really weird. About 10 days ago I awoke to the lower portion of my face swollen. Two of my doctors and my dentist ( I am having some work done) have no idea why this has happened. A week later I awoke to find a lump on either side of my neck. I have had a chest CT because my voice is hoarse without being sore, and a neck CT. The conclusion is that I have prominent Buccal fat pads in my face and Lipomas within my neck. I find it strange that both of these swellings just popped up and are bilateral. I have had long covid since February and spent three weeks in the hospital Oct/Nov last year. Blood work indicates that at some time in my life I had EBV. News to me. I am 73 and have lost so much of my quality of life. One thing after the other. Anyone else experiencing this?

REPLY
@gillysmom

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.

Jump to this post

I’m serious when I say I went to our local emergency room because I couldn’t breath and told the doctor I had long Covid his reply was “what’s that”😳

REPLY
@anonymous303059

I’m serious when I say I went to our local emergency room because I couldn’t breath and told the doctor I had long Covid his reply was “what’s that”😳

Jump to this post

Please check out resources for the Epstein Barr virus, It has been associated with Covid long haulers and COvid vaccine injury. Because the docs are clueless in so many medical situations, sufferers have gathered together too share their experiences of what has helped them overcome the effects of activation of the EBV (Epstein. Barr Virus. Two long hauler groups that have helped many people are Stuff that Works and Facebook Cocid Long Haulers. I have used Lysiine 500 mg plus olive leaf extract 500mg plus Inspired Nutrition scoop of MONOLAURN/ all 3 twice a day, I took other antiviral supplements but was helped most by eliminating gluten and dairy and protocol described herein. MOST people who are making some progress are sharng options that helped other long haulers. Best wishes for your recovery.

REPLY
@julesmango

Call his dr. See if he will prescribe oral medicine, pax….Pzifer drug. Has to be within 5 days of testing positive.
When I got it again, thankfully it was not as bad and more importantly did not make long Covid symptoms worst, my biggest fear. I think all the vaccines and boosters and natural immune helped.

Jump to this post

THANKS it is day FOUR and he is better and breathing normal but still coughing. THE SECOND DAY SCARED ME...IT IS NOT COVID tests show the OMNICRON which is different. TOO MUCH SWEATING and soaking the bed, fever, etc. most gone. HOT TEA, HOT SOUP COUGH MEDS (ROBITUSSIN) TYLENOL now taking hold. THANK YOU FOR CARING..CALLED THE DOCTOR here DOC SAID DO NOT COME INTO THE OFFICE...TOO MANY PEOPLE SICK...COVID, OMNICRON AND THE NEW FLU so much and so different each...THANKS FOR CARING and the GOOD ADVICE...MargaretO

REPLY
Please sign in or register to post a reply.