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

I'm in the same boat as you with the EBV being reactivated. I was 45 when I caught Covid and I'm now a 47 yr old Long Hauler. I just hit my two year mark a couple days ago and it hit me hard. As soon as I caught Covid I stopped getting a period and haven't had one since. It's nice, but wtf is this disease doing to my body?! I gained a lot of weight because I have hypothyroidism and Covid essentially started eating my thyroid. It nearly killed me. I spent March through July sick in bed with a 100-102 degree fever and flu-like symptoms unable to do anything. It's just been me and my disabled kitty the whole time. My family and friends have disowned me. I haven't hugged someone in over a year.
I have nobody to talk to. I'm stuck in my studio apartment in Boston alone and watch the world go on outside my window and wish so badly that I had my old life back so I can be like those lucky people. I have an appt with my pcp tomorrow and I'm going to have him prescribe Metformin. My glucose levels are elevated as well and I've read on other forums that people have had good luck with that. When I first had EBV I remember taking Valtrex. Is it helping your symptoms now? I'm wondering if I should ask my doctor to prescribe that as well. I was looking into an inhaler called Trelegy also, but read the side effects and they scared the shit out of me. Have you heard of NAC? I take that with glutathione. Look it up and check out the benefits. I also take Elderberry with Zinc and Vitamin C, Ashwaghanda root with turmeric, ginger, apple cider vinegar, 10,000IU of D3 and a pre-natal multi vitamin.
I've been fighting with SSDI for a year and a half and have barely any income which doesn't help the stress levels. Sorry for the long message, but I wanted to reach out to find out if the Valtrex is helping?
Cheers,
Melissa

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.

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.

BINGO! Everything you said here resonates with me! I had mono 44 years ago. I absolutely have had to be my own advocate. I am waiting for my NP to get me in with an infectious disease doc to prescribe me Valtrex. She won't give me anything...feels uncomfortable and doesn't know enough about it. I am the one that asked for all the EBV antibody tests which were sky high 3 weeks ago. Not positive for current Mono though. Meanwhile I have found more help on here from reading other's stories and talking to friends/family with ME/CFS and chronic EBV diagnoses.

I believe my EBV was reactivated last March 2022 when I got Covid when I was under a lot of stress. (I think stress had a lot to do with it) My symptoms seem to be mild compared to many of these stories I am hearing! I had PEM (post-exertional malaise) and dizziness after exercise and just general fatigue all the time. While waiting to get into a specialist and ask for Valtex, I have started L-lysine (and some other stuff) and that seems to be making a world of difference in my fatigue in just a week! And maybe it's just time? No one knows.

Thanks for sharing your experience and insight.

Thank you for sharing your story too. I am hopeful you will get the necessary treatment soon!

Hey man you've got that right this definitely is not a way of living life there has got to be answers there has got to be solutions and there has to be more doctors opening their ears and their minds and listening to what we're saying I literally sound like an old man and I'm a 48 year old woman I've never been so froggied throated in my life I have times in my tonsils adenoids and my patella swell up so bad that I could barely breathe my sleep apnea is getting out of control I'm getting these split very brief but more frequent sharp headaches they make my tinnitus ring for days so much phlegm in the upper part of my chest but they keep saying oh your lungs sound real good oh your blood looks great all your digestive system is beautiful then please tell me why can't I see straight why do I always hear noises in my head puking constipated have electric feeling going in my nerve endings in my hands my feet muscle spasms you name it it's like somebody tell me what's going on please tell me this is not in my mind this is not how I want to die I have lost 22 family and friends since 2020 that I'm wondering if they're still alive and I'm the one that's actually dead

I am truly sorry for you and the nightmare you’re going through, it’s so scary and even worse when it’s something that no one has much information about. It’s not going to help you or anyone going through this including me by listening to frightening stories of conspiracy theories, you’re going to make a bad situation even worse. I’m almost 72 and I have battled lung cancer twice in the past two years, I also have long covid and I’m coping with terrible symptoms. I lost too much weight from cancer and now I have to deal with new problems. I finally asked for help after three months of trying to help myself, we don’t have enough doctors here to choose from. I realized quickly that what I had read is true, the doctor told me not to put the onus on covid, I felt that it would be a waste of time to argue, I asked for tests to be done and although I was grateful they didn’t find anything relevant but I also felt that it was the way they wanted to deal with me. I believe that we’re in the fight for our lives and to be able to survive on our own terms, I’m from a family of survivors and I don’t give up easily although I came close a few times. It’s difficult to express myself as well as I would like to do but my brain is going faster than my texting abilities lol..please don’t give in to quitting the battle, hang in there and fight back for your right to medical care and if you don’t like what they say or do then you find someone else until you get the right ones to help you. We are many in numbers and more people are going to have the same problems that we have and they will have to deal with it because it’s too big to sweep under the carpet