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.

@heatherbeans

I had Covid 12/31/20. Found out in November 2021 I had reactivated Epstein Barr. I was offered no treatment or help

Jump to this post

Hi @heatherbeans. Hope this comes across kind light intended. Your comment is what so many experience and so many others dont have a clue happens. This support group is wonderful to glean helpful healing ways for yourself. Ive had EBV issues over 35 yrs and received no healthcare system treatment options. However, found countless healing foods, exercises, meditation, mindful daily self care to basically be in remission over half the time and dealing with it after covid now but believe things could be so much worse without using/doing the above. The hardest part of this journey I think is truly giving oneself the ability to rest and truly recognize the effects of post covid. Wore a dress that tied around neck and didnt realize debilitating neck and body reaction keeping me in bed after. Hope you can take manageable small steps to find your bodies helpful healing ways and only the best to you!🌈

REPLY

I went to a long-covid clinic and was encouraged to go to physical therapy, speech therapy, dermatology, pulmonology, and get an x-ray and blood testing done. I have a doctor's order for each. This is getting very expensive! I'm beginning to think the doctors are capitalizing on long-covid! I don't think my parents had to pay so much when I had mono twice as a teenager.

REPLY
@law59

Hi @heatherbeans. Hope this comes across kind light intended. Your comment is what so many experience and so many others dont have a clue happens. This support group is wonderful to glean helpful healing ways for yourself. Ive had EBV issues over 35 yrs and received no healthcare system treatment options. However, found countless healing foods, exercises, meditation, mindful daily self care to basically be in remission over half the time and dealing with it after covid now but believe things could be so much worse without using/doing the above. The hardest part of this journey I think is truly giving oneself the ability to rest and truly recognize the effects of post covid. Wore a dress that tied around neck and didnt realize debilitating neck and body reaction keeping me in bed after. Hope you can take manageable small steps to find your bodies helpful healing ways and only the best to you!🌈

Jump to this post

@law59 Could you please share which healing foods you have found to be helpful? Also, do you take supplements? If so, what do you take? Thank you 🙂

REPLY
@clays23

@law59 Could you please share which healing foods you have found to be helpful? Also, do you take supplements? If so, what do you take? Thank you 🙂

Jump to this post

Hi @clays23. Started years ago with strict all natural low carb eating with things truly enjoyed, slowly added/changed foods to see how my body reacted like night shades, mushrooms(fungus), etc. Eat small meals every few hours daily with combination of each food type spinach/green veggies, apple, blueberries, strawberry, carrot, low sugar fruit added or plain greek yogurt, small portion nuts/seeds( high calorie for portion size☹️), no nitrites meat protein like chicken/turkey/ fish, corn/green tortillas, beans/lentils. Found many great almond/coconut flours but portion size to stay within your particular daily carb limit suggested🙃. I have wicked sweet tooth and do cheat special occasions with much caution and years of figuring out what I can get away/live with😛 Stevia and Monk fruit my helpful sweeteners. Lots of water with couple ounces kombucha added throughout day, no caffeine. Start each day one decaf coffee with spirulina, turmeric, cinnamon, stevia, and splash of oatmilk or other natural low sugar cream option. Take daily age appropriate multivitamin, l-lysine, nac, d3/fishoil, blackseed oil, calcium. Timing of when you eat/take things very important so suggest reading possible reaction of combined foods, pills with/without meal and time of day/empty stomach. I even called my pharmacist to clarify label contradictions/difficulties with dose/time etc. Everybody’s bodies are different so kind reminder to give it weeks time to try/eliminate certain food item. Hope this good starting point as my foggy brain probably left something out🙃 and all the best to you!🌈

REPLY
@law59

Hi @clays23. Started years ago with strict all natural low carb eating with things truly enjoyed, slowly added/changed foods to see how my body reacted like night shades, mushrooms(fungus), etc. Eat small meals every few hours daily with combination of each food type spinach/green veggies, apple, blueberries, strawberry, carrot, low sugar fruit added or plain greek yogurt, small portion nuts/seeds( high calorie for portion size☹️), no nitrites meat protein like chicken/turkey/ fish, corn/green tortillas, beans/lentils. Found many great almond/coconut flours but portion size to stay within your particular daily carb limit suggested🙃. I have wicked sweet tooth and do cheat special occasions with much caution and years of figuring out what I can get away/live with😛 Stevia and Monk fruit my helpful sweeteners. Lots of water with couple ounces kombucha added throughout day, no caffeine. Start each day one decaf coffee with spirulina, turmeric, cinnamon, stevia, and splash of oatmilk or other natural low sugar cream option. Take daily age appropriate multivitamin, l-lysine, nac, d3/fishoil, blackseed oil, calcium. Timing of when you eat/take things very important so suggest reading possible reaction of combined foods, pills with/without meal and time of day/empty stomach. I even called my pharmacist to clarify label contradictions/difficulties with dose/time etc. Everybody’s bodies are different so kind reminder to give it weeks time to try/eliminate certain food item. Hope this good starting point as my foggy brain probably left something out🙃 and all the best to you!🌈

Jump to this post

Thank You! I just wanted to see if we had any overlap and we do. This is all new to me (connecting with others through Mayo). I definitely think that all we can do its research, listen, try things and make our own conclusions based on our own body's reactions to the things we try. I did just re-read the labels on my supplements and realized I am taking some of them "wrong". It takes a lot of time and energy to be your own health advocate! Best of luck and continued optimized health to you 🙂

REPLY
@frking

I am seeing a functional medicine doctor. Although I have never had mono, I am being treated as they would for Epstein Barr. The supplements have erased my fatigue and breathlessness. My other issues are improving.
I suppose you can say I had a serious case. The admitting doctor at the emergency room gave me little hope of surviving because I also had pneumonia. I couldn't believe he said that to me. I was hospitalized for three weeks, back in Oct. and again in February, where the only reason for my illness then was that I had Long Covid.
If you choose to see a functional medicine doctor, be sure he is also a MD and not someone in the medical field who is practcing this modality as a supplement to their business. I went that route some years back and he gave everyone the same supplements etc. He was not an MD. Good Luck to everyone.

Jump to this post

What medication has your doctor been giving you for Epstein Barr? My post covid ebv values are super high. My one doc said everyone has EBV, etc. but I am like well I feel like total crap now after covid and the values of EBV are super high. He said not much can do. Did they give you acylovir or something to help or just natural stuff?

REPLY
@aztennisguy

What medication has your doctor been giving you for Epstein Barr? My post covid ebv values are super high. My one doc said everyone has EBV, etc. but I am like well I feel like total crap now after covid and the values of EBV are super high. He said not much can do. Did they give you acylovir or something to help or just natural stuff?

Jump to this post

Hi there, I am not sure if you were speaking to another person or to me. But I’m reading what you’re saying about Long Covid and symptoms lessening with time and your supplements. That has been working for me. I started supplements at the beginning of April and my dizziness is completely gone along with most of the fatigue, although I still take it easy whenever I feel tired.
I could not get my provider to give me an antiviral, even though I had very very high antibodies in all of the EBV tests. She is not familiar with it and didn’t feel comfortable. So I have not taken an antiviral just L-lysine. I did have mono as a teenager and I feel that Covid reactivated an immune response.
Best of luck for you with continuing improvement!

REPLY
@clays23

Hi there, I am not sure if you were speaking to another person or to me. But I’m reading what you’re saying about Long Covid and symptoms lessening with time and your supplements. That has been working for me. I started supplements at the beginning of April and my dizziness is completely gone along with most of the fatigue, although I still take it easy whenever I feel tired.
I could not get my provider to give me an antiviral, even though I had very very high antibodies in all of the EBV tests. She is not familiar with it and didn’t feel comfortable. So I have not taken an antiviral just L-lysine. I did have mono as a teenager and I feel that Covid reactivated an immune response.
Best of luck for you with continuing improvement!

Jump to this post

Appreciate it. At this point, I think most of us long haulers are just going to experiment with the medications you see some of the functional medicine type doctor's researching things. Just need to find a doctor that can prescribe the meds. There is no question that EBV is an issue with long haulers, yet it is not even being treated with just a two dose of acyclovir, etc. I will try the l-lysine, and I also heard monolaurin, but at this point I am going to ask doc for ivermectin and maybe acyclovir.

If you hear of anything else with this EBV stuff, feel free to post. Thanks again.

REPLY
@aztennisguy

What medication has your doctor been giving you for Epstein Barr? My post covid ebv values are super high. My one doc said everyone has EBV, etc. but I am like well I feel like total crap now after covid and the values of EBV are super high. He said not much can do. Did they give you acylovir or something to help or just natural stuff?

Jump to this post

Hello,
It was not a doctor practicing traditional medicine, but a Functional Medicine Doctor who treated me. It was all supplements, not a lot, two or three for three weeks, then different ones for the next three weeks, and again different ones for the last three weeks.
If you see a Functional Medicine doctor please be sure he is truly a functional medicine practioner. Too many have added this type of practice to their true practice and are not fully educated in Functional Medicine.

REPLY
@deeburke

Just wanted you to know I’ve been dealing with post covid since last October. It was severe at time. I even had a CRP blood test that spiked to 96! Several MD360 visits, 1 ER visit and slowly getting better . Used an out of network dr who used repurposed drugs that really helped. I had a breakthrough last week with brain fog. I decided to take 10mg of my older adderall I had for add/adhd and it completely cleared up my brain fog. I’ve been taking it now for a week with excellent results. I’d encourage you to ask your healthcare provider if this is something you could try. My hearts in really good shape now so no concerns there. I hope this will help someone out there who’s suffering like I have been. Good luck and don’t give up!

Jump to this post

I hope it works for brainfog. I have had several times I've had 3 day's or a full week of WOW, it's finally gone and POW, it's back. I surely hope this isn't what you're going to have happen. I hope you have hit on something. I'm tired of this new normal. I'll keep watching for you're posts.

REPLY
Please sign in or register to post a reply.