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.

gillysmom | @gillysmom | Nov 9, 2022
In reply to @denglish19 "Absolutely, I would be happy to do that. I will share what worked for me. I..." + (show)
@denglish19

Absolutely, I would be happy to do that. I will share what worked for me. I had terribly debilitating symptoms and am a fairly healthy woman, 140lbs, in my late-30's when all of this occurred. Disclaimer: Amino acids are found naturally in food, so I believe these are safe to take for most people, but I am not a medical professional and do not know how they might interact with other prescriptions or supplements you are taking.

Every supplement mentioned here is the NOW brand, with a white and orange label, purple cap, easily found on Amazon or in any other vitamin shop (iHerb is a good supplement website online too). This is what I took and felt a difference fairly quickly (within one week), but I eat a very clean diet generally too.

Niacinamide, 500mg - take 3x per day with food
Taurine, 500mg - take 4x per day, between meals
Choline & Inositol 500mg - take 2x per day, with food
Glutathione - 250mg, take 2x per day, empty stomach

Tryptophan - 1000mg (only take if you have Covid induced depression/anxiety) - take 1 at bedtime, empty stomach. You can take 1 more during the day but it can cause sleepiness. PLEASE skip this if you already take something for depression/anxiety/mental health. Do not combine them.

I can't tell you how long it will take for you to get better (for example, 3 months) because every person's body and system is different. It sounds like your system is extremely fatigued, and I don't know what your diet is on a day to day basis... But you will feel a difference with these supplements, so just try to pay attention each day if you have a bit more energy or more mental clarity. I took ALL of these supplements until the bottle ran out, and some of them I purchased again and continue taking, but on a lesser basis (one per day, or every other day).

In addition to supplements you MUST try to eat as well as you can. Anti-inflammatory diet means less fatty meats, less processed foods (chips, cookies, microwave meals etc), less dairy, NO sugar -- to the extent possible. Lots of fresh veggies and fruits, lean meats, and stay hydrated! (Liquid IV is good for hydration. One packet per day, very very watered down.) Covid causes extreme inflammation in the body and bringing the inflammation down to a reasonable level is really crucial, to give your body a break, and to enable it to focus on recovery. Eating a better diet will also certainly help, but it takes time. Please let me know if I can answer any additional questions for you...

Also, if you are in a large enough city, it is possible to get IV infusions at home or in a clinic of glutathione but it is very costly. But some people have done that with great success as well, if you are desperate and want to see results more quickly. We don't know much about how absorbable glutathione is in the blood stream but I tried it once, and found my energy levels improved drastically for about a week afterward. That's when I started taking glutathione in supplement form.

Jump to this post

I have already ordered most of the supplements - waiting on their arrival. My situation is complicated by many comorbids. I did not have Covid, but contracted a SARS from my college grandson with almost identical health impacts, all before Covid was pandemic in US. It took a year, but I worked my way through some awful symptoms, the most notable zaping my immune system so I had to overcome about 8 old and new complications. NOT LONG after feeling human again, I became seriously injured from Moderna 1 with all my old quiescent autoimmune diseases reactivated, along with all the symptoms of long Covid, a new autoimmune dsease, and utterly debiltating indescribable fatigue. I couldn't hold my head up lyng down. Addtionally, developed shortness of breath when I made efforts to engage in life. So, the road back to health is a long one for me, with some progress, but I am now dependent, although still in the battle despite my almost 90 years and several years of inching my way back to health. I am most grateful for the explanations you provided for the your protocol, and I hope your clarity helps lots of Mayo Connect members besides me.

REPLY
2 replies
denglish19 | @denglish19 | Nov 9, 2022
In reply to @gillysmom "I have already ordered most of the supplements - waiting on their arrival. My situation is..." + (show)
@gillysmom

I have already ordered most of the supplements - waiting on their arrival. My situation is complicated by many comorbids. I did not have Covid, but contracted a SARS from my college grandson with almost identical health impacts, all before Covid was pandemic in US. It took a year, but I worked my way through some awful symptoms, the most notable zaping my immune system so I had to overcome about 8 old and new complications. NOT LONG after feeling human again, I became seriously injured from Moderna 1 with all my old quiescent autoimmune diseases reactivated, along with all the symptoms of long Covid, a new autoimmune dsease, and utterly debiltating indescribable fatigue. I couldn't hold my head up lyng down. Addtionally, developed shortness of breath when I made efforts to engage in life. So, the road back to health is a long one for me, with some progress, but I am now dependent, although still in the battle despite my almost 90 years and several years of inching my way back to health. I am most grateful for the explanations you provided for the your protocol, and I hope your clarity helps lots of Mayo Connect members besides me.

Jump to this post

Goodness, you have been through a lot! And I SO admire your perseverance and determination to continue on, and to get better, physically. You certainly do have a lot of complex comorbidities, and I'm not sure how this supplement regimen will help, since I used this protocol for long haul Covid... But it's worth trying the extra amino acids, I believe.

I have learned to not introduce anything new into my system, when my immunity is already compromised. I've just learned over the years that I have a very sensitive system overall... So, I'm sorry to hear you had such a bad reaction to the Moderna 1 vaccination. I realize that it is encouraged for those who are immuno-compromised, however our poor bodies are already going through so much, there's no telling how it will affect us... and I believe that's why we see so many people with strange symptoms, even after just vaccination. Especially those with EBV, there's just no telling how each person will react. I personally feel it's irresponsible to give "one size fits all" health advice, which is why (in my opinion) knowing your own body is absolutely best.

I do sincerely hope these supplements can bring you some relief. They are specifically for nervous system support, as well as cellular health/transport of key nutrients, which many of us are probably lacking from undergoing severe illness, as well as from lack of a healthy diet. The B-3 is specifically for energy, via the creation of NAD in the body. The NOW brand has excellent descriptions on each bottle for the purpose/use of each amino acid. And in your case, if you are not already taking a B-complex, I would highly recommend that as well. Please let us know how you do!

REPLY
1 reply
denglish19 | @denglish19 | Nov 9, 2022
In reply to @lorilee13 "Hello, I too have EBV, and seems to have a connection to the V long haulers..." + (show)
@lorilee13

Hello,

I too have EBV, and seems to have a connection to the V long haulers and I believe Covid Kong haulers as well.

I found a few Drs seem to also be making this connection and soon hopefully we can get the right medication, diagnosis, and treatment so we can live somewhat better lives than we do now.

Hopefully you are feeling well ❤️

Jump to this post

Please see my comment to gillysmom today, as this supplement protocol helped me heal my long haul Covid completely. I had very severe symptoms, to the point I couldn't drive, work or run basic errands, and just needed this supplementation (and a healthy diet) to get back on track. You don't need more prescriptions/medications that just treat symptoms one by one, and give you even more side effects... You need to treat the root cause of the fatigue and depletion in the body. Many, many people have healed themselves fully from long haul, or at least back to 80-90% with a variety of supplements and practices (ice baths, chiropractic care, hyperbaric oxygen etc). Sending hugs and best wishes!

REPLY
rsfcowgirl | @rsfcowgirl | Nov 9, 2022
In reply to @gillysmom "I have already ordered most of the supplements - waiting on their arrival. My situation is..." + (show)
@gillysmom

I have already ordered most of the supplements - waiting on their arrival. My situation is complicated by many comorbids. I did not have Covid, but contracted a SARS from my college grandson with almost identical health impacts, all before Covid was pandemic in US. It took a year, but I worked my way through some awful symptoms, the most notable zaping my immune system so I had to overcome about 8 old and new complications. NOT LONG after feeling human again, I became seriously injured from Moderna 1 with all my old quiescent autoimmune diseases reactivated, along with all the symptoms of long Covid, a new autoimmune dsease, and utterly debiltating indescribable fatigue. I couldn't hold my head up lyng down. Addtionally, developed shortness of breath when I made efforts to engage in life. So, the road back to health is a long one for me, with some progress, but I am now dependent, although still in the battle despite my almost 90 years and several years of inching my way back to health. I am most grateful for the explanations you provided for the your protocol, and I hope your clarity helps lots of Mayo Connect members besides me.

Jump to this post

Hi. So nice to meet you here
Post viral syndrome, which is what you describe and are experiencing, occurs with many viruses. It's not exclusive to COVID-19. You have the symptoms and are doing well by progressing. I wouldn't consider your any lessor of a candidate for great improvement then anyone else. I believe you can improve greatly. You're already on the right track of nutrition and knowledge. Go for it with positive expectation.
I support the supplements list with the exception of L Tryptophan for you, in that dose or at all, bc of your age. It's highly brain sedating at night and that places you at risk for falling. Not worth the risk. It doesn't help the post video recovery if you are able to sleep reasonably well. And it's truly potent. I don't take it for that reason and I'm younger than you. I almost fell after getting out of bed from the effects and I don't have balance issues.
Added to this list, Magnesium is a big helper. It's inexpensive. There are many options of this but the oxide is least expensive + least impacting on the GI tract bc it's absorbed in the stomach. We are deficient in this typically anyway. It helps muscle function and brain. Also zinc, taken at opposite times as Mg. Same with calcium. They compete for absorption so take each with different meals or snacks.
The shortness of breath could perhaps be helped with exercising your lungs while at rest. Deep breathing with slight breath holding then full exhalation at your own place for several mins thru the day can improve your respiration. It helped me. See Dr Furman, YouTube.
Also, while comfortable + with good body alignment, if you could tolerate small efforts of large muscle strengthening using very light resistance (see internet or ask here) while breathing with exertion you could increase muscle mass and strength. Protein + collagen (powers or drinks) are usually necessary to make progress. But you could try it without for afew weeks to see how your body responds. We lose muscle and collagen while debilitated and with age. We need to consistently combat that when aging and during/after being debilitated. I take it daily.
I hope your taking a good dose of Vit D3 too. And coffee, even decaf or with a slight shake of caffeine is deemed good for us. Recent legitimate studies indicate Green tea has some antiviral benefits. These are all small positive steps but they add up.
I've ventured into the world of eastern medicine. I have obtained huge gains from one specific form + bioceutical of tumeric root essence called curcumin in the processed form of NanoCur. Sold on Amazon, a starter trial pack of 10 capsules is under $3.00. I would never take any other curcumin bc of contamination + fraud in this industry. This product is made in US and is pharmaceutical grade.
I hope you start your new supplement regime slowly so you know how each agrees with you. And expect healthy benefits for your efforts over time.
Praying for the restoration of your energy, strength and daily life. Keep in touch with us.
Blessing.

REPLY
1 reply
rsfcowgirl | @rsfcowgirl | Nov 9, 2022
In reply to @denglish19 "There are lots of anti-viral herbs and supplements on the market, however to treat the long..." + (show)
@denglish19

There are lots of anti-viral herbs and supplements on the market, however to treat the long haul depletion you need other supplementation such as B-3, glutathione, certain amino acids, histamine blockers, and an anti-inflammatory and low histamine diet. There is LOTS of good information in the Facebook Long Haulers group, with 90,000+ people from around the world sharing their stories and useful information. All the best to you!

Jump to this post

Histamine blockers are contraindicated in Seniors. Just FYI.

REPLY
1 reply
rsfcowgirl | @rsfcowgirl | Nov 9, 2022

I had Epstein Barr badly as a teen. I'm now suffering from Long Covid. All are viruses that produce neurological symptoms so it's not beyond medical reasoning to try interventions for viruses. I haven't found a Dr in my area who is even comfortable exploring this new medical problem we are suffering from. I willng to be a guinea pig but no one is confident to try. So I think I'm going to ask my neurosurgeon, who understands brains better than anyone, if he'll experiment medically on me based on recommendations from developing Post COVID clinics. He's a genius and a great person. My greatest issue is drop-dead extreme exhaustion. Nothing can overcome it but rest/sleep for days after I overdo exertion or work. I financially need to work. Need to. So I need some treatment. Thanks for the info.

REPLY
1 reply
gillysmom | @gillysmom | Nov 9, 2022
In reply to @denglish19 "Goodness, you have been through a lot! And I SO admire your perseverance and determination to..." + (show)
@denglish19

Goodness, you have been through a lot! And I SO admire your perseverance and determination to continue on, and to get better, physically. You certainly do have a lot of complex comorbidities, and I'm not sure how this supplement regimen will help, since I used this protocol for long haul Covid... But it's worth trying the extra amino acids, I believe.

I have learned to not introduce anything new into my system, when my immunity is already compromised. I've just learned over the years that I have a very sensitive system overall... So, I'm sorry to hear you had such a bad reaction to the Moderna 1 vaccination. I realize that it is encouraged for those who are immuno-compromised, however our poor bodies are already going through so much, there's no telling how it will affect us... and I believe that's why we see so many people with strange symptoms, even after just vaccination. Especially those with EBV, there's just no telling how each person will react. I personally feel it's irresponsible to give "one size fits all" health advice, which is why (in my opinion) knowing your own body is absolutely best.

I do sincerely hope these supplements can bring you some relief. They are specifically for nervous system support, as well as cellular health/transport of key nutrients, which many of us are probably lacking from undergoing severe illness, as well as from lack of a healthy diet. The B-3 is specifically for energy, via the creation of NAD in the body. The NOW brand has excellent descriptions on each bottle for the purpose/use of each amino acid. And in your case, if you are not already taking a B-complex, I would highly recommend that as well. Please let us know how you do!

Jump to this post

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.

REPLY
2 replies
denglish19 | @denglish19 | Nov 9, 2022
In reply to @rsfcowgirl "Histamine blockers are contraindicated in Seniors. Just FYI." + (show)
@rsfcowgirl

Histamine blockers are contraindicated in Seniors. Just FYI.

Jump to this post

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/

REPLY
1 reply
denglish19 | @denglish19 | Nov 9, 2022
In reply to @rsfcowgirl "I had Epstein Barr badly as a teen. I'm now suffering from Long Covid. All are..." + (show)
@rsfcowgirl

I had Epstein Barr badly as a teen. I'm now suffering from Long Covid. All are viruses that produce neurological symptoms so it's not beyond medical reasoning to try interventions for viruses. I haven't found a Dr in my area who is even comfortable exploring this new medical problem we are suffering from. I willng to be a guinea pig but no one is confident to try. So I think I'm going to ask my neurosurgeon, who understands brains better than anyone, if he'll experiment medically on me based on recommendations from developing Post COVID clinics. He's a genius and a great person. My greatest issue is drop-dead extreme exhaustion. Nothing can overcome it but rest/sleep for days after I overdo exertion or work. I financially need to work. Need to. So I need some treatment. Thanks for the info.

Jump to this post

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!!

REPLY
1 reply
gillysmom | @gillysmom | Nov 9, 2022
In reply to @rsfcowgirl "Hi. So nice to meet you here Post viral syndrome, which is what you describe and..." + (show)
@rsfcowgirl

Hi. So nice to meet you here
Post viral syndrome, which is what you describe and are experiencing, occurs with many viruses. It's not exclusive to COVID-19. You have the symptoms and are doing well by progressing. I wouldn't consider your any lessor of a candidate for great improvement then anyone else. I believe you can improve greatly. You're already on the right track of nutrition and knowledge. Go for it with positive expectation.
I support the supplements list with the exception of L Tryptophan for you, in that dose or at all, bc of your age. It's highly brain sedating at night and that places you at risk for falling. Not worth the risk. It doesn't help the post video recovery if you are able to sleep reasonably well. And it's truly potent. I don't take it for that reason and I'm younger than you. I almost fell after getting out of bed from the effects and I don't have balance issues.
Added to this list, Magnesium is a big helper. It's inexpensive. There are many options of this but the oxide is least expensive + least impacting on the GI tract bc it's absorbed in the stomach. We are deficient in this typically anyway. It helps muscle function and brain. Also zinc, taken at opposite times as Mg. Same with calcium. They compete for absorption so take each with different meals or snacks.
The shortness of breath could perhaps be helped with exercising your lungs while at rest. Deep breathing with slight breath holding then full exhalation at your own place for several mins thru the day can improve your respiration. It helped me. See Dr Furman, YouTube.
Also, while comfortable + with good body alignment, if you could tolerate small efforts of large muscle strengthening using very light resistance (see internet or ask here) while breathing with exertion you could increase muscle mass and strength. Protein + collagen (powers or drinks) are usually necessary to make progress. But you could try it without for afew weeks to see how your body responds. We lose muscle and collagen while debilitated and with age. We need to consistently combat that when aging and during/after being debilitated. I take it daily.
I hope your taking a good dose of Vit D3 too. And coffee, even decaf or with a slight shake of caffeine is deemed good for us. Recent legitimate studies indicate Green tea has some antiviral benefits. These are all small positive steps but they add up.
I've ventured into the world of eastern medicine. I have obtained huge gains from one specific form + bioceutical of tumeric root essence called curcumin in the processed form of NanoCur. Sold on Amazon, a starter trial pack of 10 capsules is under $3.00. I would never take any other curcumin bc of contamination + fraud in this industry. This product is made in US and is pharmaceutical grade.
I hope you start your new supplement regime slowly so you know how each agrees with you. And expect healthy benefits for your efforts over time.
Praying for the restoration of your energy, strength and daily life. Keep in touch with us.
Blessing.

Jump to this post

You and I are on the same page. I NEVER ORDERED THE TRYPTOPHAN, and I am ALREADY taking Mag oxide. Good suggestion about resistance training, and I'll search it out. Vit d3 is on its way, ordered a few days ago. Nanocur and step wise use of new supplements are excellent suggestions. Thank you for suggestions, good wishes. and blessings. Blessings to you.

REPLY
View MoreView Less
Please sign in or register to post a reply.