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.

@pacer3702

I am a Covid vaccine neurological Long-Hauler. We resemble Covid Long-Haulers. The Danish physician who is helping our Facebook group prescribes EBV antivirals for those with a history of EBV. There is evidence that the immune dysregulation after Covid or the vaccines can allow reactivation of dormant EBV.

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Hi. Can you tell me the name of the Facebook group please?

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@gillysmom

'How do I send a mail request to the coordinator? Will my simple statememt on personal page and another on the news page;
"I would like to join the Neuro V Long-Haulers" Would this be sufficient? I'm not very tech savvy. Thank you.

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I don't know why the "JOIN GROUP" button is missing. Have you tried making a post to the Facebook group stating that you would like to join and why?

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@pacer3702

I don't know why the "JOIN GROUP" button is missing. Have you tried making a post to the Facebook group stating that you would like to join and why?

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Send me a friend request..Roberta Bernstein-Hausman. I am a memner of the AIP group and maybe when you are able to see the posts, you will page.find a different way to join or I may be able to help. I tried to join another group recommended by a Mayo connect member, and could not find access. It is a Covid vaccine injured group of long haulers. Maybe we can help eachother. I'm not very tech savvy, so we may have to work this out by dscussion once you are on my FB news page. Sorry you ran into so much trouble. It's been a while. I suggest that eliminating gluten, dairy, eggs, nuts, beans, sugar can get you started, The OK grains, fruits, veggies, etc. make a difference in food variety. I'll help as much as I can.

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@gillysmom

Send me a friend request..Roberta Bernstein-Hausman. I am a memner of the AIP group and maybe when you are able to see the posts, you will page.find a different way to join or I may be able to help. I tried to join another group recommended by a Mayo connect member, and could not find access. It is a Covid vaccine injured group of long haulers. Maybe we can help eachother. I'm not very tech savvy, so we may have to work this out by dscussion once you are on my FB news page. Sorry you ran into so much trouble. It's been a while. I suggest that eliminating gluten, dairy, eggs, nuts, beans, sugar can get you started, The OK grains, fruits, veggies, etc. make a difference in food variety. I'll help as much as I can.

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In the meantime, this might be helpful. I found a resource that could guide you.
'The Inflammation Diet and Recipe Book, by Jessica K. Black. Thriftbooks has a used papeback copy for $4.69.

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@pacer3702

I don't know why the "JOIN GROUP" button is missing. Have you tried making a post to the Facebook group stating that you would like to join and why?

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I found a resource that might be helpful, a resource that could guide you. The Inflammation Diet and Recipe Book.
Jessica K. Black. Thriftbooks has a used paperback copy for $4.69.

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@phl

I had covid a month ago and am still suffering from very bad shortness of breath. Didn’t have too bad symptoms for the first week and then this started. Cant move from chair to chair, or even just sitting, without feeling out of breath and heart pounding. Any ideas or help on this? Have asthma that used to be under control

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Please go to see an Allergy doctor . Covid made Asthma get worse . I have the same and my Allergy doctor gave me Steroid , Ipratropium Bromide o.5 mg and Albuterol 3 mg ( ihave been using Trelegy ) . The result is great , i am 90% fine now

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So what I’ve noticed over the past year that I’ve had long Covid and it all started because I’ve had Epstein-Barr in the past and it got reactivated not only do I have the chronic fatigue syndrome for one year and brain fog obviously, but over the last three months, my body parts randomly start jolting and shaking, almost like electricity, my leg, my eye, my face start twitching all of a sudden And it’s as if something is inside me that’s taking control of my body and I have zero control and then it moves to different areas of my body may be in a given hour. It happens four or five times in particular when I’m in bed laying down. I was wondering if anyone has experienced this as well best wishes

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@dannycali82

So what I’ve noticed over the past year that I’ve had long Covid and it all started because I’ve had Epstein-Barr in the past and it got reactivated not only do I have the chronic fatigue syndrome for one year and brain fog obviously, but over the last three months, my body parts randomly start jolting and shaking, almost like electricity, my leg, my eye, my face start twitching all of a sudden And it’s as if something is inside me that’s taking control of my body and I have zero control and then it moves to different areas of my body may be in a given hour. It happens four or five times in particular when I’m in bed laying down. I was wondering if anyone has experienced this as well best wishes

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Hello @dannycali82. You will notice that I have moved your post into an existing discussion on the topic of Epstein Barr and long COVID, which you can find here:
- Epstein-Barr Treatment for Long Covid?: https://connect.mayoclinic.org/discussion/epstein-barr-treatment-for-long-covid/

I did this to allow you to connect with others like @gillysmom and @starlight79 who have shared in this discussion.

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I’m 59. Extreme EBV 20’s and 30’s. Changed to high protein and all natural eating, daily strength exercise not exerting heart that enabled exceptionally healthy remission for over 20 yrs. and built up to strenuous 4-5 house a day housekeeping business. Mild Covid Feb 2022. March ER extreme chest pain tachycardia, whole body waves random area numbness, any movement cause malaise/difficulty breathing, bp 160/110 and over 20 point reading difference right side vs left. Ct chest extensive tissue damage, lung nodules, stated symptoms long term covid, no med. Referral additional resources yet nothing to help. Month same above with neurological problems/“brain fog”, O2 sats random down to 70’s, extreme chest and head pain more left sided, red 1 inch round and 1 inch deep painful bumps started on stomach then other painful joint episodes hip, around/in neck harder to breath, back, thighs and now random chest rash. April labs pituitary/thyroid affected and no symptoms improvement with med. Critical care md pulmicort, only used month until extreme chest pain lessened as no other symptom help and steroid. Lots of water during day with only walking to bathroom did help lower bp. Extreme symptoms at night being helped by meditating, citrus gummy’s for salivary glands not working. Neurologist August for July brain MRI stated covid created brain lesions and benign growth and will “be fine”. Speech Therapist Sept for breathing issues brought on by talking however only able to address cognitive/memory issues and seeing improvement. Glasses prescribed for covid vision impairment but not effective when eye muscles get tired from any movement.
Any repetitive movements as typing, talking, writing still bring on difficulty breathing and any other myriad of symptoms. Still no rhyme/reason, cause/effect but can feel a little improvement by focusing on moment feel numbness or any increase/new symptom make sure off feet, head elevated, eating small high protein every couple of hours. Share all this to say if I can see light end of tunnel with no income, disability benefits, and the stress of this post covid has me talking to mental health provider, I kindly urge anyone reading this to never doubt its real and truly take all measures to care for yourself to cherish every moment.

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