Long Covid Fatigue - Exhausting Physically and Mentally

Our daughter is 19 and has had constant ongoing fatigue as well. I actually heard that this could be a result of EBV getting reactivated. I told our MD, he ordered a mono test and it turned out negative. Is that the right test to use or did you perhaps have a more sensitive test that our primary MD does not know about? Would you please share the tests they took to determine it was reactivated EBV? We really could use your input so we can consider following the same path. Thank you very much for sharing...

Julesmango, if you don't mind, could you please come back and share if the Valtrex worked to restore your health from EBV? Thank you...

The Chronic Fatigue Syndrome (CFS) specialist that I saw at Institute Neuroimmune Medicine INIM at Nova Southeastern University, ordered the following Labcorp tests:
EBV Nuclear Antigen Ab, IgG
EBV Ab VCA, IgG
EBV Early Antigen Ab,IgG
EBV Ab VCA,IgM
EBV PCR
Also CFS specialist ordered the following tests:
Human Herpes Virus 6 PCR
Cytomegalovirus (CMV) Ab, IgG
I was negative for the last two; Herpes 6 and CMV but they see others with chronic fatigue that are positive with these two. Worth checking all.
The first three EBV tests I was positive. So she prescribed Valtrex (Valacyclovir) 500 mg tablets 1 tablet by mouth twice daily. Although I have only been on it 2.5 weeks, I think it is helping. I was negative for the last two EBV tests, but the first three positive, the results were high, way out of the range.
She didn’t test me for Mono but I know I don’t have Mono. When I did have it in college, 36 years ago, from EBV. I had the worst sore throat and fatigue but it lasted 6-8 weeks, not the same. The good news is: This long Covid fatigue has SLOWLY gotten better but over 18 months. The first 2 months I was in bed all day on a bad day and a good day maybe walk to family room and lay on the sofa all day. But slowly, I could do a little more each day. Then I would overdo it and crash. Migraines on bad days. After having to see a neurologist for the onset of migraines from Covid, I have found Rizatriptan ODT 5 mg tablets. dissolve 1 tablet as the migraine starts and it helps fight it off now! A wonderful discovery. Wish I had Riza, in the beginning, but thankful to have the last 4 months of this journey.
I hope all this information helps someone else dealing with post Covid fatigue. Positive Attitude is everything I have learned. Also when you have a bad day, think about or look at a list of things that use to make you feel good. The other thing I have learned is to manage your moments. Pace and keep track of your activities throughout the day. Every day you have different energy levels and have to divide your tasks into manageable portions and intersperse them with resting periods. Everyday I have scheduled naps in the afternoon. At first, I would rest every time a migraine was coming. Now 18 months later, with managing moments and daily naps, plus the revelation that I had EBV all these years and Covid reactivated it causing this crazy fatigue and having a treatment plan finally, I can enjoy limited activity. I hope others will stay strong and positive during their individual post long covid journey! 😊

@lynndanielle, I wanted to share some information that may allow your daughter relief from her daily dreads. These links contain information to lay a path beginning with biofilms that viruses and other pathogens form for the survival of the organism. Removing the biofilm exposes the organism to more effective treatment results. The next link brings forward for your consideration l-lysine and explaines it's function. The medical medium link contains supplement information. I want to inject using the liposomal forms of vitamin C and Quercetin offers higher absorption levels than the standard forms contained in the link. Also, olive leaf extract is mentioned generically. Consider the product East Park makes. I have used it for shingles and flu with good effect. If you do consider using olive leaf please review available products. Finally, magnesium is needed to activate vitamin D. Always consult your health care professional before using any supplement.

https://www.drlamcoaching.com/blog/what-you-should-know-about-biofilm/
https://www.medicalmedium.com/blog/healing-benefits-of-l-lysine
https://www.heraldopenaccess.us/openaccess/etiology-of-chronic-disease-a-discussion-on-epstein-barr-virus

@sheila1946, in addition to all the responses you've received from fellow members, I merged your discussion about fatigue and long COVID to this existing discussion that @julesmango started
- Long Covid Fatigue - Exhausting Physically and Mentally https://connect.mayoclinic.org/discussion/long-covid-fatigue-exhausting-physically-and-mentally/

I encourage everyone to read the thread from the beginning. Some insightful resources and experiences have been shared.

Sheila, are you familiar with the term COVID crash?

I am having terrible fatigue, daily nasal drainage from my nose and down my throat (causing a lot of phlegm and choking issues), and brain fog. I've been on intermittent fmla since Dec. There are days where I literally cannot wake up, as often as once a week. I struggle to find words multiple times throughout the day and can't recall things from earlier in the day, or week, etc. It is so frustrating. The brain fog has worsened in the last month.
I initially had covid at the beginning of the pandemic and then again in Dec of last year, which is when my Dr's started telling me all of these symptoms where covid long haul. After my PCP had sent my to all the specialists he could think of, all returning me to him with "normal", "negative", or "nothing wrong" findings; I was referred here. I hope for relief for all of us!

Yes, so frustrating and makes you feel hopeless that no one seems to be researching for a remedy. They are though setting up specializing clinics all over....many states. Some Statistics are showing 3.2 million people are diagnosed now, so should start generating more attention!

I have been dealing with the same symptoms +. Very frustrating.

Hi. I was just checking back with you to see if the medication worked for you? I was telling my neurologist about it. I hope that it did and you are all better!!

Hi,
Thank you for reaching out. It has been 2 months on the anti viral medicine ( Valtrex) and I think it is helping but I am not all better yet. Since it was a year and half ago that I had Covid and it reactivated EBV (mono 1986) I figure it is not going to change overnight. Learning to manage my activities and daily naps, I think also plays an important part in the recovery. 4 more months of anti viral medication and hopefully the EBV will go back to sleep and I won’t have chronic fatigue. Time will tell.