1. < Post-COVID Recovery & COVID-19

Anyone tested for Epstein-Barr virus (EBV)?

Posted by ericy210 @ericy210, Nov 3, 2022

Another site had long Covid people saying they were getting tested and some had positive results for having Epstein Barr, which I read is latent in 90% of humans and can cause my symptoms of brain fog and fatigue.

I asked the UIC/Mayo long Covid study (Recover) director at UIC about it. She said EBV testing is outside the scope of the study. She said it would be a good idea for me to ask my primary care doctor about it. So I’ll ask him to prescribe a test for me.

Have any of you been down the EBV road?

This disease is so odd. I’ve learned about naltrexone and EBV from these sites to bring up to my long Covid specialists at UIC and Northwestern. So much to learn.

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

rsfcowgirl | @rsfcowgirl | Nov 9, 2022
In reply to @denglish19 "rsfcowgirl, most long haulers have very very extreme exhaustion. It's the most common symptom, other than..." + (show)
@denglish19

rsfcowgirl, most long haulers have very very extreme exhaustion. It's the most common symptom, other than brain fog. You're definitely not alone in that, and I would advise you to NOT over-extend yourself in any way, if possible. The protocol I mentioned WILL treat fatigue. The B-3 especially (niacinamide). It's simply a matter of getting the right nutrients back into your system. Your blood work will come back normal -- as it does for most of us -- but it's really not a neurological issue...

And I only share this because thousands of people are going to specialists, spending hundreds, if not thousands of dollars, and still not getting real answers. CT scans, MRI's, all kinds of tests... will not help you get clarity on this. If you join the Facebook long-haulers group, with thousands of people around the world, you will see stories like that everywhere -- people spending their life savings -- when really a few supplements might do the trick. It seems hard to believe but it is true. And I'm sure you do have an excellent neurosurgeon. I wish you all the very best!!

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Hi. Thanks for your info sharing. I don't participate in FB. To be clear, I take supplements of a broad variety. Do happens my blood work showed elevations in eosinophils+ other biodefensive responses. I have a neuro focus in this bc of new properly done human studies recently pointed to the primary motor cortex+ sensory cortex as the organ+ location in brain where the viruses I'm subjected to are believed to lodge and dwell, creating most, if not all, of the neurological symptoms associated with the neuro long Covid. The RNA at the least from CV cross the blood brain barrier and lodges in the brain in the 2 (adjacent) areas. The vagus nerve is resultantly also greatly effected. So Vagal simulation for symptom control is also a strong element of the medical views I happen to agree with + want to follow. This is in addition to supplements. This deals with the virus itself in the body which is not neutralized by the body's defenses for an extended period. Some of the likely target prescription drugs for this in the US require on-label prescribing ( active viral infection) plus emergency use authorization. This prevents a Dr from prescribing these for Long Covid. However, one or two high level academic medical institutions are holding resurrec research clinics using these medications but they just started. And it's not open to the general public. I would like my neurosurgeon to attempt to set me up for receiving these on a research basis, if possible.
Blood brain barrier penetration is essential to target the virus in the brain. This is the challenge.
Glad for you regarding your recovery. Thanks for sharing with us. Stay well.

REPLY
2 replies
rsfcowgirl | @rsfcowgirl | Nov 9, 2022

Sounds like you're guided by a " higher authority." How fortunate for you. 🕊️

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rsfcowgirl | @rsfcowgirl | Nov 9, 2022
In reply to @gillysmom "I sense your concern and kindness and thank you for your support and compassion. So many..." + (show)
@gillysmom

I sense your concern and kindness and thank you for your support and compassion. So many of us who have been injured by viruses or the thousands who have been Covid vaccine injured, of necessity, have become sensitive to what works and what is not helpful. We, the injured, are writing history because the docs are facing so many unknowns. We have the best data if something is working, an awareness that we feel better because...and the pool of shared information is growing. In rural Oregon, where I was living when I contracted the SARS infection that took me from mddle aged at 87 to old age at 88, I could not get my prmary doc to return my many phone calls, during which I would have asked for help. That experience shifted the burden onto me to find solutions, and these support groups are amazing resources. Also, a fair amount of trial and error with my own research. But with so many parts of me infected or misfiring, and two of my autoimmune diseases requiring opposite treatments, my progress is slow, and that's OK, as long as there is progress. Medicating myself is like playing a fine delicate instrument. To add an inescapable complication, I am living with my son who was resposible for my SARS infection, so he has gone ovrboard in trying to protect me. My food is all ordered from the outside, served by my son, which is different from how it was when I was living on my own, in a big beautful house, doing my own shopping and cooking, despite my health problems. Yes, if anything, I am a warrior, a PhD retired psychologist and artist. on a scale of 1 to 10 in independence, I'm an 11. SO, I won't be giving up, and can somehow sense if something is going to be helpful. I sense your protocol will be helful, but time will tell. Thank you again for caring.

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PS. I completely understand the loss of your own home and independence. From experience. My heart is with you. We just have to chose to grow where we are planted.

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rsfcowgirl | @rsfcowgirl | Nov 9, 2022
In reply to @denglish19 "The histamine blockers being used for long-haul treatment are over the counter, like Pepcid AC (H2..." + (show)
@denglish19

The histamine blockers being used for long-haul treatment are over the counter, like Pepcid AC (H2 blocker) and Claritin (H1 blocker)--not prescription strength. I don't know if that makes a difference in contraindication in seniors, as you mention? I've never heard about the contraindication before, nor seen it mentioned on other message boards. Do you know the reasoning behind it, in seniors?

This is a really good explanation for why the histamine blockers work, as many people with long haul have symptoms very similar to MCAS (mast cell activation syndrome) - https://hoffmancentre.com/treatments-for-lowering-histamine-and-reducing-mcas-symptoms/ & https://hoffmancentre.com/treatments/mcas/

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Hi. The newest histamine blockers are fine for the older people but the earlier generations are not. Anticholinergic effects are negative for brain cognition and sedation is a threat.

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denglish19 | @denglish19 | Nov 12, 2022
In reply to @gillysmom "I sense your concern and kindness and thank you for your support and compassion. So many..." + (show)
@gillysmom

I sense your concern and kindness and thank you for your support and compassion. So many of us who have been injured by viruses or the thousands who have been Covid vaccine injured, of necessity, have become sensitive to what works and what is not helpful. We, the injured, are writing history because the docs are facing so many unknowns. We have the best data if something is working, an awareness that we feel better because...and the pool of shared information is growing. In rural Oregon, where I was living when I contracted the SARS infection that took me from mddle aged at 87 to old age at 88, I could not get my prmary doc to return my many phone calls, during which I would have asked for help. That experience shifted the burden onto me to find solutions, and these support groups are amazing resources. Also, a fair amount of trial and error with my own research. But with so many parts of me infected or misfiring, and two of my autoimmune diseases requiring opposite treatments, my progress is slow, and that's OK, as long as there is progress. Medicating myself is like playing a fine delicate instrument. To add an inescapable complication, I am living with my son who was resposible for my SARS infection, so he has gone ovrboard in trying to protect me. My food is all ordered from the outside, served by my son, which is different from how it was when I was living on my own, in a big beautful house, doing my own shopping and cooking, despite my health problems. Yes, if anything, I am a warrior, a PhD retired psychologist and artist. on a scale of 1 to 10 in independence, I'm an 11. SO, I won't be giving up, and can somehow sense if something is going to be helpful. I sense your protocol will be helful, but time will tell. Thank you again for caring.

Jump to this post

You have articulated this journey so well, and I truly admire your candor and who you are as an individual. I also have always had an "innate knowing" about my own body, since the time I was a child, and have always seemed to "just know" what would work, and also when something is really off. (For instance, when I had mononucleosis I was told it was "bad allergies" causing my tiredness, and I was a high school student then!)

I do hope we are contributing to the body of medical knowledge in these areas, but in my experience it is usually the "alternative", holistic practitioners who are able to help so much more. Mostly because they look at someone as a whole individual - body, mind and spirit - and also operate from this knowledge about how the body works as a whole system.

My main hope is that more and more Americans will become privy to this information, and it does seem to be happening with extreme events like Covid -- if we are to look for one ray of hope in this unique time in history. I have no doubt you will continue to improve, as your mindset and awareness certainly moves you in the right direction.

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denglish19 | @denglish19 | Nov 12, 2022
In reply to @rsfcowgirl "Hi. Thanks for your info sharing. I don't participate in FB. To be clear, I take..." + (show)
@rsfcowgirl

Hi. Thanks for your info sharing. I don't participate in FB. To be clear, I take supplements of a broad variety. Do happens my blood work showed elevations in eosinophils+ other biodefensive responses. I have a neuro focus in this bc of new properly done human studies recently pointed to the primary motor cortex+ sensory cortex as the organ+ location in brain where the viruses I'm subjected to are believed to lodge and dwell, creating most, if not all, of the neurological symptoms associated with the neuro long Covid. The RNA at the least from CV cross the blood brain barrier and lodges in the brain in the 2 (adjacent) areas. The vagus nerve is resultantly also greatly effected. So Vagal simulation for symptom control is also a strong element of the medical views I happen to agree with + want to follow. This is in addition to supplements. This deals with the virus itself in the body which is not neutralized by the body's defenses for an extended period. Some of the likely target prescription drugs for this in the US require on-label prescribing ( active viral infection) plus emergency use authorization. This prevents a Dr from prescribing these for Long Covid. However, one or two high level academic medical institutions are holding resurrec research clinics using these medications but they just started. And it's not open to the general public. I would like my neurosurgeon to attempt to set me up for receiving these on a research basis, if possible.
Blood brain barrier penetration is essential to target the virus in the brain. This is the challenge.
Glad for you regarding your recovery. Thanks for sharing with us. Stay well.

Jump to this post

How wonderful that you are able to do such in depth research and keep abreast of new ongoing developments. It's reassuring to know that the medical science is also studying what "laymen" are sharing, as far as what effective treatments are for long-haul.

I just get so pleased and downright tickled that one can easily "reset" the vagus nerve with simple therapies -- many of which have been known in "traditional" or "holistic" healing circles for millennia. For instance breathwork, ice baths, hot/cold bursts in the shower, meditation, any practice that truly reduces stress. In Japan, they prescribe "forest bathing" now. Isn't that fantastic? These practices have to be ongoing though, a life long habit, which is simply just living in balance, the way humanity used to when we were still connected to the earth...

I do know a woman personally, by the way, who totally healed her blood brain barrier. She nearly died from heavy metal poisoning (she was a chemistry professor for years), and she turned to "alternative" therapies that ultimately saved her life. Many amazing things are possible, and I love that we can learn and share about them here, and in other venues as well. All the best to you!

REPLY
denglish19 | @denglish19 | Nov 12, 2022
In reply to @rsfcowgirl "Hi. Thanks for your info sharing. I don't participate in FB. To be clear, I take..." + (show)
@rsfcowgirl

Hi. Thanks for your info sharing. I don't participate in FB. To be clear, I take supplements of a broad variety. Do happens my blood work showed elevations in eosinophils+ other biodefensive responses. I have a neuro focus in this bc of new properly done human studies recently pointed to the primary motor cortex+ sensory cortex as the organ+ location in brain where the viruses I'm subjected to are believed to lodge and dwell, creating most, if not all, of the neurological symptoms associated with the neuro long Covid. The RNA at the least from CV cross the blood brain barrier and lodges in the brain in the 2 (adjacent) areas. The vagus nerve is resultantly also greatly effected. So Vagal simulation for symptom control is also a strong element of the medical views I happen to agree with + want to follow. This is in addition to supplements. This deals with the virus itself in the body which is not neutralized by the body's defenses for an extended period. Some of the likely target prescription drugs for this in the US require on-label prescribing ( active viral infection) plus emergency use authorization. This prevents a Dr from prescribing these for Long Covid. However, one or two high level academic medical institutions are holding resurrec research clinics using these medications but they just started. And it's not open to the general public. I would like my neurosurgeon to attempt to set me up for receiving these on a research basis, if possible.
Blood brain barrier penetration is essential to target the virus in the brain. This is the challenge.
Glad for you regarding your recovery. Thanks for sharing with us. Stay well.

Jump to this post

As far as viral healing goes, to my knowledge it's not possible. There are thousands of viruses in the world and hundreds (if not thousands) that exist in our bodies all the time. So, as far as I know, the best thing we can do is keep our body in balance (physically, mentally, emotionally), to keep the virus' from flaring up. Is that your understanding, also?

It would be wonderful to target the virus where it resides, for instance in the brain as you mentioned, but that won't ultimately heal us completely, will it? That's why I always come back to diet, routine, stress reduction etc. But anything else you can share on this is appreciated!

REPLY
1 reply
rsfcowgirl | @rsfcowgirl | Nov 12, 2022
In reply to @denglish19 "As far as viral healing goes, to my knowledge it's not possible. There are thousands of..." + (show)
@denglish19

As far as viral healing goes, to my knowledge it's not possible. There are thousands of viruses in the world and hundreds (if not thousands) that exist in our bodies all the time. So, as far as I know, the best thing we can do is keep our body in balance (physically, mentally, emotionally), to keep the virus' from flaring up. Is that your understanding, also?

It would be wonderful to target the virus where it resides, for instance in the brain as you mentioned, but that won't ultimately heal us completely, will it? That's why I always come back to diet, routine, stress reduction etc. But anything else you can share on this is appreciated!

Jump to this post

No it's not my understanding that we can't heal viruses. We have anti-viral medical treatment. These are even more heavily in development now that so many emergent viruses have infected masses.
As far a healing people from effects of COVID, this is very serious business. This virus causes a multitude of very serious organ damage, short and long term, in many people. Most recently, the brain damage from this virus was shown to literally disconnect communication between some neurons in lab-brain-on-a-chip study. Not only does the virus itself need addressing, but Medicine is endeavoring to find treatments for the wide scope of damage or people are suffering from.
Just FYI, the therapeutic treatment for Vagus nerve correction from COVID virus disruption focuses on mild electrical stimulation.
In reading your input I feel it's important to distinguish between health maintenance vs disease and illness treatment. These are not equal.
Also, science and medicine strive to base treatments on empirical evidence. This means properly performed experiments. These get peer reviewed + then reproduced. And the process rests within the scientific/medically educated community for ongoing processing + feedback.
When I hear anecdotal claims such as healing one's blood brain barrier, I think "were there serial MRI 'S showing this?" " Were there lg + sm molecule penetration tests? " Etc Because when it comes to addressing true illnesses and diseases, unfounded claims are not a part of medical consideration.
I believe in the innate genetic programming blueprint that promotes healing in us. I believe there is value in non- medical approaches to healing. But in my view, significant illness or injury is best + foremost treated by the medical profession. Stress reduction, diet, etc are important in context for health. But they will not serve as a sole or primary treatment for true pathology.
I read what comes out of Mayo Clinic research + recommendations for the science and medical developments. They lead the pack. They are evidence based. They often arrive at conclusions early bc the community is so intelligent. They may extrapolate information from patients' open input. But they are not reviewing our comments, if they even do, because they think we know more than they do. LOL. And if people are showing up because they believe they need to teach Mayo Clinic something......no words for the absurdity of that scenario.

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mzspice | @mzspice | Nov 12, 2022

Yes I was, however they found it after. They tested and said I am no longer infectednwith the virus and I am now immune to it.

REPLY
1 reply
rsfcowgirl | @rsfcowgirl | Nov 13, 2022
In reply to @mzspice "Yes I was, however they found it after. They tested and said I am no longer..." + (show)
@mzspice

Yes I was, however they found it after. They tested and said I am no longer infectednwith the virus and I am now immune to it.

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I didn't mean to state we can't heal from any virus. I'm unfortunately focused on the COVID virus in those where it lingers and is not healed by out bodies and continues to be a problem. Persistent virus is what I was thinking of ...such as HIV, Hep C .. etc. In some cases, COVID-19 seems like it may be a persistent virus in some people. In this case, it requires medical intervention.

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