In Anthony William's book I mentioned, he provides a way to rid your body of the virus but its not simple. Its a 3 month process/cleanse. If you live alone and don't have to cook for family and can do the cleanse it would be a lot easier. It sounds like you would benefit greatly from it since EPV has caused you so many problems. I am considering doing it. It will take some planning as you have to get certain supplements, then plan you menu to exclude foods that the virus loves, and eat only ones it doesn't.
@cherawgirl Please be very careful before starting a cleanse/detox. Check with your doctor to make sure you have no medical contraindications. https://www.nccih.nih.gov/health/detoxes-and-cleanses-what-you-need-to-know
You don’t want to cause yourself any problems!
Give your doctor a call or message them thru the portal. Sound like a good plan?
In college I was sick with what my college doctor said was pneumonia concurrent infection with mono (Epstein-Barr). I went to sleep, barely able to function for exhaustion and when I woke up, I couldn’t walk. I had to roll out of my bed to the bathroom and pull myself up on the fixtures to stand. Immediately, I went from an A student with excellent recall to being air-headed and unfocused, could no longer read for comprehension and study properly. I became hypothyroid within a month, and began suffering a series of bodywide infections that would not respond to antibiotics or other treatments. I became allergic to things that never bothered me before, and my illnesses caused me to drop out of college.
I have never been tested or treated for EBV and now with so many of my symptoms (neuropathy, fatigue, CFS/ME, fibromyalgia, unexplained lymph node swelling without fevers etc.) seeming similar to Long Covid, I’m wondering if I have “Long Epstein Barr”. Has anyone else experienced this, and is there some reason docs refuse to give anti-virals?
In college I was sick with what my college doctor said was pneumonia concurrent infection with mono (Epstein-Barr). I went to sleep, barely able to function for exhaustion and when I woke up, I couldn’t walk. I had to roll out of my bed to the bathroom and pull myself up on the fixtures to stand. Immediately, I went from an A student with excellent recall to being air-headed and unfocused, could no longer read for comprehension and study properly. I became hypothyroid within a month, and began suffering a series of bodywide infections that would not respond to antibiotics or other treatments. I became allergic to things that never bothered me before, and my illnesses caused me to drop out of college.
I have never been tested or treated for EBV and now with so many of my symptoms (neuropathy, fatigue, CFS/ME, fibromyalgia, unexplained lymph node swelling without fevers etc.) seeming similar to Long Covid, I’m wondering if I have “Long Epstein Barr”. Has anyone else experienced this, and is there some reason docs refuse to give anti-virals?
In college I was sick with what my college doctor said was pneumonia concurrent infection with mono (Epstein-Barr). I went to sleep, barely able to function for exhaustion and when I woke up, I couldn’t walk. I had to roll out of my bed to the bathroom and pull myself up on the fixtures to stand. Immediately, I went from an A student with excellent recall to being air-headed and unfocused, could no longer read for comprehension and study properly. I became hypothyroid within a month, and began suffering a series of bodywide infections that would not respond to antibiotics or other treatments. I became allergic to things that never bothered me before, and my illnesses caused me to drop out of college.
I have never been tested or treated for EBV and now with so many of my symptoms (neuropathy, fatigue, CFS/ME, fibromyalgia, unexplained lymph node swelling without fevers etc.) seeming similar to Long Covid, I’m wondering if I have “Long Epstein Barr”. Has anyone else experienced this, and is there some reason docs refuse to give anti-virals?
Wow. Your story is the first I've heard that even mentioned EBV and significant effects on day to day life. I had a similar start to college, EBV and now long term effects. I had a immunology doctor tell me I had EBV viremia. He did not explain what or what to do about it. I've searched for anything that explains the numerous symptoms and came up with nothing. I fully believe there's something to 'long' EBV. Good luck. I'll keep watching this thread for any revelations.
From an article I read Epstein Barr virus mimics a lot of autoimmune diseases, so you can be diagnosed with an autoimmune disease and it could be wrong. It could be Epstein Barr reactivating again. Also, EBV can live in your system forever and reactivate under certain situations, so my question is? Should anyone having symptoms of certain diseases should they get the EBV test done? If so, does your primary doctor do the test and send it off to the lab since it's a blood test?
Shot was a few years ago. It is the latest I believe. EB is a bummer. I was sick for many years with it. Everything was wrong. Terrible time in my life. I was in my late 40s until 50s. Bare with it. It gets better. It is autoimmune but didn’t know it. I have several of those now. (For another day)
Going down this road of undiagnosed illnesses everything keeps pointing back to EBV. I met with a Neurologist to specializes in MS. He said it’s the thing that long-haul Covid researchers are studying, MS also has flareups from EBV and fibromyalgia and chronic fatigue are probably connected to. I had a test for EBV and I am active and have antibodies that are pretty high and IGG and IGM and I still don’t totally know what those acronyms mean but it has something to do with my antibodies.
I’ve been diagnosed with Lyme disease I’ve been diagnosed with fibromyalgia and chronic fatigue syndrome and and and. I’m realizing now I can have Lyme disease and I can have Epstein-Barr and chronic fatigue and fibromyalgia are just the reactions to my body getting hit by viruses and bacteria and then Epstein-Barr comes out of its hiding place to say hey let’s party. My legs hurt and ache and burn and all the things and my body feels like it’s at the first day of what a normal person would feel of their worst flu. When your brain can’t function and you just wanna sleep all day long and your body aches. That is essentially what Epstein-Barr has done to me and then all the friends that come out of their hiding places to party with it
In college I was sick with what my college doctor said was pneumonia concurrent infection with mono (Epstein-Barr). I went to sleep, barely able to function for exhaustion and when I woke up, I couldn’t walk. I had to roll out of my bed to the bathroom and pull myself up on the fixtures to stand. Immediately, I went from an A student with excellent recall to being air-headed and unfocused, could no longer read for comprehension and study properly. I became hypothyroid within a month, and began suffering a series of bodywide infections that would not respond to antibiotics or other treatments. I became allergic to things that never bothered me before, and my illnesses caused me to drop out of college.
I have never been tested or treated for EBV and now with so many of my symptoms (neuropathy, fatigue, CFS/ME, fibromyalgia, unexplained lymph node swelling without fevers etc.) seeming similar to Long Covid, I’m wondering if I have “Long Epstein Barr”. Has anyone else experienced this, and is there some reason docs refuse to give anti-virals?
There are several Stages of EBV starting with the initial infection, to reactivated EBV and on to Chronic EBV. This may be what you meant by "Long Epstein Barre". The very best you can do for yourself is to #1 - educate yourself on everything related, and #2 find a Functional Dr. who will test you regularly and help you manage it. Ask for a complete EBV panel with all 4 of the Nuclear Antigens, (VCA-IgG, VCA-IgM, EARLY AG, EBNA). This will give you the clearest picture of where you are with EBV. Dr. Been has a clear explanation of this serology testing and what the results mean at this link. https://members.drbeen.com/library/epstein-barr-virus-ebv-serology/SJLy09WZF
Most GP's do not know how to advise you on EBV infection, other than to tell you to go home and rest.
I don't know if you are familiar with Dr. Been's lectures or not, but he explains a lot of details, and studies in his lectures in layman's terms. You might start with listening to some of his videos online to understand why you are feeling like you do, and just how sneaky this virus can be. Here is a link to get you started and this video explains how the Covid Infection has caused a huge amount of Reactivated EBV in the population referencing several studies worldwide. If you have the time he has (4) different videos on the subject of EBV. https://members.drbeen.com/library/epstein-barr-virus-prevalence-in-long-covid/Hy3asLn-F
He is also featured in the forum of FLCCC.com at this link. https://covid19criticalcare.com/courses/long-story-short-with-dr-been/lessons/long-story-short-4/
FLCCC.com is also a treasure chest of good research and solutions to help fight Long Covid and other illnesses developed from the infection and the shot.
As for my experience with the illness, it is extensive and long. I will share one of my previous post, in hopes that it might help you in your search for good health again. I have posted in the past in the "Chronic Reactivated EBV" thread of Mayo Clinic CHAT, as I have suffered with it for almost 40 years! In my 30’s I came down with Guillian Barre’ Syndrome which they suspected came from EBV. Within a couple of years after recovering from that paralysis I was diagnosed with Reactivated EBV which began my long journey with Holistic medicine.
My GP or my Infectious Disease specialist at that time did not know how to help me. My Infectious Disease Dr. did offer to send me back to Duke University Hospital, but I had already been there for months with the GBS and unfortunately, I don’t think back then in the 1980’s anyone knew what to do about it. I was told to go home and rest!
I found a book by a Holistic Dr. called ‘Chronic Fatigue Syndrome/aka Epstein Barre Virus’ by Dr Jesse Stoff. It was a life saver and had very specific directions and protocols for supplementing and diet. I followed it religiously and within 3 months was feeling recovered to where I could be up "ALL" day and not a partial day. As long as I maintained the discipline of watching my diet and supplements, I knew would help, I was able to maintain my improvement. Then as I aged into my 50’s I let my guard down. I stopped the supplements and paid little attention to my health. EBV came back with a vengeance, and I have struggled with it ever since. I am now 70! @lovelovelove you are very correct! There are alternatives out there that will help but if you suffer from Reactivated EBV in a Chronic form, you must tackle this from ALL fronts and be diligent with your approach. Do not put yourself on the back burner of importance in relation to your health, stress level, diet, rest and relationships. It all is Important!
Some of the medications and supplements I am on are Valtrex, Low Dose Naltrexone, Lauricidin/monolaurin, Vitamin C, D3, K2, Zinc, Quercetin, B complex, Turmeric, probiotics/IBS Clear (yes the gut issues are real with EBV), Omega 3, CoQ10, and Ivermectin if I am in the middle of a cold or flu. I do not take any vaccines and was told by Duke Drs. NOT to EVER take any, ever again, so it doesn’t surprise me that the vaccine from COVID has caused issues with reactivating this virus. I have found in the last 6 months while being titrated up with LDN (Low Dose Naltrexone) that I have felt better than I have in a long time, even though my numbers are higher than they’ve ever been, and I show I am in an active case of mono with every test. With that bit of information, I feel like it is really helping the way I feel even though my numbers do not reflect it. They have dropped ever so slightly in the last 4 months but are nowhere near normal levels! But I had a Dr. tell me once that this is not a sprint, it is a marathon and that it would take time, so I pray that with each recheck of my titers there will be improvement. Sometimes there is slight improvement and sometimes it is worse, especially if I have had an infection, cold, flu, covid, anything like that will cause a flare of the EBV. Which is why we should never let our guard down if you are suffering with a Chronic EBV illness.
Don’t get discouraged, just take extremely good care of YOU! You are the only one who can. REST when you need it, it's important! Eat as healthy as is possible, whole foods, stay away from junk food. Supplement your diet with what will support your immune system. Reduce your stress if possible. At least when the Drs. don’t have the answers you can research and go the holistic approach to help some. If you can find a Functional Dr. to assist you in this journey, you’ll be way ahead in your recovery. Interview your Drs. ask them if they have had any experience with treating EBV. Recovery is possible, you can put this beast back in a latent state, so there is HOPE!! Keep looking up!! Prayers for you all! God Bless.
Thank you, what a wealth of information. Even my Integrative Health team has never mentioned any of this to me. If nothing else you have given me hope for a better existence.
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@cherawgirl Please be very careful before starting a cleanse/detox. Check with your doctor to make sure you have no medical contraindications.
https://www.nccih.nih.gov/health/detoxes-and-cleanses-what-you-need-to-know
You don’t want to cause yourself any problems!
Give your doctor a call or message them thru the portal. Sound like a good plan?
In college I was sick with what my college doctor said was pneumonia concurrent infection with mono (Epstein-Barr). I went to sleep, barely able to function for exhaustion and when I woke up, I couldn’t walk. I had to roll out of my bed to the bathroom and pull myself up on the fixtures to stand. Immediately, I went from an A student with excellent recall to being air-headed and unfocused, could no longer read for comprehension and study properly. I became hypothyroid within a month, and began suffering a series of bodywide infections that would not respond to antibiotics or other treatments. I became allergic to things that never bothered me before, and my illnesses caused me to drop out of college.
I have never been tested or treated for EBV and now with so many of my symptoms (neuropathy, fatigue, CFS/ME, fibromyalgia, unexplained lymph node swelling without fevers etc.) seeming similar to Long Covid, I’m wondering if I have “Long Epstein Barr”. Has anyone else experienced this, and is there some reason docs refuse to give anti-virals?
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2 ReactionsI have nuclear EBVVand take Monolaurin and I Lysine, have you have tests for different types of EBV?
Wow. Your story is the first I've heard that even mentioned EBV and significant effects on day to day life. I had a similar start to college, EBV and now long term effects. I had a immunology doctor tell me I had EBV viremia. He did not explain what or what to do about it. I've searched for anything that explains the numerous symptoms and came up with nothing. I fully believe there's something to 'long' EBV. Good luck. I'll keep watching this thread for any revelations.
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Hug
3 ReactionsNo, I’ve never has any doctor even suggest there were different types of EBV or to recommend testing.
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1 ReactionI first tested positive for EBV in 1989. I have never tested negative since.
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1 ReactionSo do you no longer have EBV?
(((Hugs))) to you. We have a lot in common. I’m sorry you’re going through this, too.
There are several Stages of EBV starting with the initial infection, to reactivated EBV and on to Chronic EBV. This may be what you meant by "Long Epstein Barre". The very best you can do for yourself is to #1 - educate yourself on everything related, and #2 find a Functional Dr. who will test you regularly and help you manage it. Ask for a complete EBV panel with all 4 of the Nuclear Antigens, (VCA-IgG, VCA-IgM, EARLY AG, EBNA). This will give you the clearest picture of where you are with EBV. Dr. Been has a clear explanation of this serology testing and what the results mean at this link.
https://members.drbeen.com/library/epstein-barr-virus-ebv-serology/SJLy09WZF
Most GP's do not know how to advise you on EBV infection, other than to tell you to go home and rest.
I don't know if you are familiar with Dr. Been's lectures or not, but he explains a lot of details, and studies in his lectures in layman's terms. You might start with listening to some of his videos online to understand why you are feeling like you do, and just how sneaky this virus can be. Here is a link to get you started and this video explains how the Covid Infection has caused a huge amount of Reactivated EBV in the population referencing several studies worldwide. If you have the time he has (4) different videos on the subject of EBV.
https://members.drbeen.com/library/epstein-barr-virus-prevalence-in-long-covid/Hy3asLn-F
He is also featured in the forum of FLCCC.com at this link.
https://covid19criticalcare.com/courses/long-story-short-with-dr-been/lessons/long-story-short-4/
FLCCC.com is also a treasure chest of good research and solutions to help fight Long Covid and other illnesses developed from the infection and the shot.
As for my experience with the illness, it is extensive and long. I will share one of my previous post, in hopes that it might help you in your search for good health again. I have posted in the past in the "Chronic Reactivated EBV" thread of Mayo Clinic CHAT, as I have suffered with it for almost 40 years! In my 30’s I came down with Guillian Barre’ Syndrome which they suspected came from EBV. Within a couple of years after recovering from that paralysis I was diagnosed with Reactivated EBV which began my long journey with Holistic medicine.
My GP or my Infectious Disease specialist at that time did not know how to help me. My Infectious Disease Dr. did offer to send me back to Duke University Hospital, but I had already been there for months with the GBS and unfortunately, I don’t think back then in the 1980’s anyone knew what to do about it. I was told to go home and rest!
I found a book by a Holistic Dr. called ‘Chronic Fatigue Syndrome/aka Epstein Barre Virus’ by Dr Jesse Stoff. It was a life saver and had very specific directions and protocols for supplementing and diet. I followed it religiously and within 3 months was feeling recovered to where I could be up "ALL" day and not a partial day. As long as I maintained the discipline of watching my diet and supplements, I knew would help, I was able to maintain my improvement. Then as I aged into my 50’s I let my guard down. I stopped the supplements and paid little attention to my health. EBV came back with a vengeance, and I have struggled with it ever since. I am now 70! @lovelovelove you are very correct! There are alternatives out there that will help but if you suffer from Reactivated EBV in a Chronic form, you must tackle this from ALL fronts and be diligent with your approach. Do not put yourself on the back burner of importance in relation to your health, stress level, diet, rest and relationships. It all is Important!
Some of the medications and supplements I am on are Valtrex, Low Dose Naltrexone, Lauricidin/monolaurin, Vitamin C, D3, K2, Zinc, Quercetin, B complex, Turmeric, probiotics/IBS Clear (yes the gut issues are real with EBV), Omega 3, CoQ10, and Ivermectin if I am in the middle of a cold or flu. I do not take any vaccines and was told by Duke Drs. NOT to EVER take any, ever again, so it doesn’t surprise me that the vaccine from COVID has caused issues with reactivating this virus. I have found in the last 6 months while being titrated up with LDN (Low Dose Naltrexone) that I have felt better than I have in a long time, even though my numbers are higher than they’ve ever been, and I show I am in an active case of mono with every test. With that bit of information, I feel like it is really helping the way I feel even though my numbers do not reflect it. They have dropped ever so slightly in the last 4 months but are nowhere near normal levels! But I had a Dr. tell me once that this is not a sprint, it is a marathon and that it would take time, so I pray that with each recheck of my titers there will be improvement. Sometimes there is slight improvement and sometimes it is worse, especially if I have had an infection, cold, flu, covid, anything like that will cause a flare of the EBV. Which is why we should never let our guard down if you are suffering with a Chronic EBV illness.
Don’t get discouraged, just take extremely good care of YOU! You are the only one who can. REST when you need it, it's important! Eat as healthy as is possible, whole foods, stay away from junk food. Supplement your diet with what will support your immune system. Reduce your stress if possible. At least when the Drs. don’t have the answers you can research and go the holistic approach to help some. If you can find a Functional Dr. to assist you in this journey, you’ll be way ahead in your recovery. Interview your Drs. ask them if they have had any experience with treating EBV. Recovery is possible, you can put this beast back in a latent state, so there is HOPE!! Keep looking up!! Prayers for you all! God Bless.
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9 ReactionsThank you, what a wealth of information. Even my Integrative Health team has never mentioned any of this to me. If nothing else you have given me hope for a better existence.
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3 Reactions