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.

@frking

Along with traditional doctors, I am seeing an herbalist who is treating me as she would treat EB, which is a virus, as is Covid. I am feeling better already and it has only been a short time of treatment .

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Share the treatment. We are all ready to try anything, so if your feeling better I'm willing to see what is working. Thank you for sharing,

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@holly197205

I have long covid ... I got sick in August 2021 and was sick for 4 months. Covid morphed into pneumonia and I was treated at home. I have neuropathy in my feet and a spot on my back , I lost 2/3 of my hair , fatigue and brain fog . The brain fog just seems to persist no matter what I try to do and the neuropathy is also very painful. I feel like I have icy hot on parts of my body. I'm on 2400 mg. of gabapentin per day and if I don't take it I can really tell a difference. My anxiety is also much worse than I originally had. I do believe that it triggered mild asthma which I hadn't had in the past. I'm just naming off things that have happened to me as I think of them. Who knows what tomorrow holds.

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This fine new disease we get to experience is awful. I've had this with the same symptoms as you for 6 months now. I dread the idea that this is our new normal. Does it tease you with a few really good feeling day's, then pow it starts all over. I try to keep busy thru the day and not focus on it. Some day's that doesn't work. Some day's you stay in bed and don't move. I find a little hit of weed helps a lot. I don't smoke but I have tried this and it helps me thru the depression and I can ignore the brain fog thru the day. Good luck. I'll enjoy this journey with you.

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@julesmango

I too had mono at 19. Now long Covid 19 months. I think EBV was reactivated. Not until I went to Nova southeastern U in Ft Lauderdale FL to Chronic fatigue specialist, 2 months ago, did I get someone who understood. I am taking Valacyclovir 500 mg 2 times a day. Seems to be helping. They also recommended K pax immune vitamins that have special mitochondria formula that I will start soon. Also they recommend Small dose of Naltrexone. I am waiting to see if these other changes help first, as I don’t do well with drugs.
Hope this helps. See my long Covid posts for other comments.

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I am in pembroke pines. I have had ebv now for 5-6 weeks i was hospitalized 9 days. DEAD TIRED AND CANT GET ANYthing done. WHAT SHould i say to my dr to prescribe me a good drug like adderall or valacyclovir. MY QUALITY of life is a F-
i APPRECIATE YOUR ADVISE

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6 weeks with ebv. I AM very tired and cant get any energy going. SOMETIMES VERY DIZZY and I need help. ALSO NEED to boost my hemoglobin fast, ANY ADVICE?!

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@jennifergillan03

Many viruses we all have had throughout our lives gives COVID the upper advantage. You first have to eliminate and system in the body for the symptoms you experiencing to eliminate a true malfunction like chest pain and the heart. If you do not have a treatable symptom. Then the roads most likely lead to the brain.. Longhaulers can not be fixed by a primary care after 6months. Longhaulers is complex and going to Mayo and meeting Dr Munipalli changed my life and the outcomes for me. Dr. Sletten and his team will help with true symptom relief. Good Luck.

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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 am in the same fix! Bad mono at 17yrs old. I was just tested for Epstein Barr and it was negative but showed I still have virus in my body!! At this point I have just endured my worst crash ever and the body pain is unreal!!! And I have a great team working hard to give some relief! THC
gummies at night help me bbut are quite expensive . I am now just embracing the beast and when my body says go I go and when it says not I go to bed. I have unwavering hope that I will heal some day. I am going through all kinds of testing because of anemia. This whole thing is pretty scary 😦

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@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 care. So please don’t believe that. How can I help.. I need more bio feed back to help you help yourself.

I recommend you buy a whoop..
Get a free WHOOP 4.0 and one month free when you join with my link: https://join.whoop.com/2486A4

Where do you live?

Your metabolic system could be malfunctioning.

The information and treatment is slow in development. Aviv Clinics in Florida has a protocol.

If you are on social media you can find my content and information at jdaniellegillan.

#covidrecoverymama

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@jennifergillan03

I care. So please don’t believe that. How can I help.. I need more bio feed back to help you help yourself.

I recommend you buy a whoop..
Get a free WHOOP 4.0 and one month free when you join with my link: https://join.whoop.com/2486A4

Where do you live?

Your metabolic system could be malfunctioning.

The information and treatment is slow in development. Aviv Clinics in Florida has a protocol.

If you are on social media you can find my content and information at jdaniellegillan.

#covidrecoverymama

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I have a whoop watch my heart rate is low below 60 when im sitting watching tv. I dont recover from physical activity. I have small fiber neuropathy and a dr i saw for consultation told me that im not getting enough cerebal blood flow and that a virus is causing my symptoms and possible infection and nobody helping figure out cause of SFN. All standard testing for causes of SFN have been negative. I need help i feel weak

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@julesmango

I too had mono at 19. Now long Covid 19 months. I think EBV was reactivated. Not until I went to Nova southeastern U in Ft Lauderdale FL to Chronic fatigue specialist, 2 months ago, did I get someone who understood. I am taking Valacyclovir 500 mg 2 times a day. Seems to be helping. They also recommended K pax immune vitamins that have special mitochondria formula that I will start soon. Also they recommend Small dose of Naltrexone. I am waiting to see if these other changes help first, as I don’t do well with drugs.
Hope this helps. See my long Covid posts for other comments.

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julesmango that is great that is helping you. Due respect, do your research. Dr. Martin Lerner pioneered this treatment 20 years ago in his clinic and helped hundreds of patients with me/cfs and reactivated EBV get their lives back. Just kind of a low dose that you're on. Standard would be 1,000 mg bid. And it takes at generally 3-6 months before you gradually start seeing great effects. I'm a retired nurse and it saved my life as I knew it before Me/CFS Via reactivated EBV and long covid. Search on his name and me/cfs. I can't really tell you my doctor's name on here but I can tell you to do that research and also add the words innate immune system. Also there is new research now if you search on Long covid post viral fatigue CFS and valacyclovir. LOL and they're acting like they invented the therapy. Btw, the success rate is pretty high if properly diagnosed. This is just my opinion with my experience yrmv. The best of luck to you. I almost never to post like this because nobody ever really listens for the most part LOL.

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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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