1. < Post-COVID Recovery & COVID-19

Epstein-Barr Treatment for Long Covid?

Posted by snakexeyes @snakexeyes, Jul 28, 2022

First, a little background: I'm 9 months in to Long Covid and just ended a treatment regimen designed by the InCellDx / Innovative Bioanalysis research group (Dr. Patterson et al). After 4 months of many medications that produced no results and only decreased my quality of life with side effects, I'm calling it. The only medication that improved my functioning was Ivermectin (which did so dramatically), but even that has plateaued for several months now. I'm now waiting until the end of October to be seen at Stanford's Post-Acute Covid Syndrome clinic and have little to no hope for that either.

The only explanation for my Long-Covid that has ever made sense to me is the theory that the virus re-activates latent Epstein-Barr in the blood. I had a very bad case of mono from age 15-17 that absolutely wrecked me, and some of my covid symptoms resemble my experience of mono, so this theory makes sense to me. For those of you who resonate with this theory and are seeking / have found treatment based on this assumption, what are you doing for treatment? Are you being prescribed medications, infusions, etc? I would be so grateful to hear about anything you may be doing or may have heard others are doing. Thank you!

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

dloos | @dloos | Jan 4 11:12am
In reply to @belson "The Bateman Horne clinic in Utah is doing a study with valacyclovir It is a randomized..." + (show)
@belson

The Bateman Horne clinic in Utah is doing a study with valacyclovir
It is a randomized trial so you may get the valacyclovir and celecoxib or placebo. Virios is the pharma company. Valacyclovir is usually used for herpes but there is some suggestions it will help LC due to viral reactivation. . This summer I had a fever blister on my lip and I was prescribed a one day high dose valacyclovir. It resolved the fever blister and my Long Covid symptoms completely resolved but started back 2 weeks later. My fatigue, dysautonomia, breathlessness etc were relieved but then returned. I think if I could have taken a longer duration it may have helped
This study will be 3 + months of therapy. Their pilot study showed success but you have to be under 65 yrs.
Is it possible for the person who mentioned the functional neurologist in Iowa to send me the doctors name and the functional dietician.
I agree, I am told many times to ask my primary care to prescribe me a therapy or med rather than the LC doctor but my primary refers me back to the LC doctor and says he won’t prescribe anything for LC since he doesn’t know that literature. The LC nurse told me to tell my primary care doctor that he needs to read the literature and that was not a realistic nor helpful suggestion or advice

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Drs are loath to prescribe off label for Covid (or anything). They worry about lawsuits and losing their medical license. It leaves all of us out of luck!
If doctors do not get on board with trying to help us with our many, many debilitating symptoms, they really should not call themselves doctors.

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pat814 | @pat814 | Jan 5 7:43am
In reply to @sfnmcashatsebv "i have gotten rejected multiple times for covid aliments at mayo clinic. They always indicate to..." + (show)
@sfnmcashatsebv

i have gotten rejected multiple times for covid aliments at mayo clinic. They always indicate to go to my primary care dr who knows nothing and dismisses symptoms. I have lost a lot of muscle mass and have extra skin on muscles. Liver & spleen inflammed and bloating is unreal. All my clothes are big on my but my at my waist. Dr tells me to loose weight, even though my mre liver indicates NASH. I dont feel like drs really care anymore

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I found that eliminating gluten from my diet relieved the constant bloating I was experiencing post Covid after eating.

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tootiredtoknit | @tootiredtoknit | Feb 3 10:13am
In reply to @milton10 "I wrote this comment elsewhere but will repeat as people are interested in EBV. I am..." + (show)
@milton10

I wrote this comment elsewhere but will repeat as people are interested in EBV. I am a physician, got mono in med school when I began seeing patients, was down for a month. I had mono again as a resident although tests were negative and I don't think anyone believed me, I had all the same symptoms including massive swelling around my eyes, was down for another month. Flash forward 30 years and I contract COVID, symptoms at first were respiratory, worst asthma of my life. Then I get horrible sore throat and terrible fatigue. I told my primary I think I have mono, she said "no way!" but was kind enough to run a mono spot with other labs. Well the mono spot came back positive! Yes, it turns out COVID resurrects mono! I'm just fortunate the mono-spot was positive because I know from personal experience that you can have mono and the tests are negative and no one takes you seriously.

My condolences to anyone experiencing mono symptoms with COVID. My symptoms are finally waning after about 5 weeks of mono but I still am not well after contracting COVID 7 weeks ago, other problems remain.

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My husband had mono as a child and is really suffering from long-COVID with mono-like symptoms. He asked for a mono-spot but the provider forgot to administer it. We'll try again based on your positive test and next time, I'm going to go with him, he's not assertive enough with doctors.

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milton10 | @milton10 | Feb 3 8:54pm

Your husband is lucky to have a supportive spouse! Many years in the past I did have what I thought were very clear mono symptoms and I was unable to work for a week. My mono spot was however negative. These viruses are very sneaky and in my opinion you can't trust the tests that are currently available. Good luck to you both.

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dreaminasecond | @dreaminasecond | Feb 5 4:28am

I too have reactivated Epstein Barr, LC, new auto immune diseases, low immunoglobulin, repeat infections, possible vaccine injury. I am starting IVIG transfusion 3x a month for 6 mo. I'll let y'all know how it goes. I'm part of a UT long Covid clinic study. Fingers crossed.

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