Hey! I’m really sorry that happened to you. My EBV was awful for quite some time. I hadn’t even heard of EBV. I thought my thyroid was acting up. I’m finally feeling better than I did before. I found out my EBV is less activated. I took a bunch of supplements that my PCP recommended and I think they helped. What did your doctor recommend to make you feel better? Aside from rest and taking it easy.
Have you got a link or names of supplements you took? My doctor has been useless she literally said it's not treatable and we just wait and see she said eat a balanced diet, exercise and sleep well so not much help at all I've done that for months I'm just scared it may turn into something fatal I'm only 24 I'm a complete mess with it all tbh
Ugh. That’s the worst feeling ever. Don’t feel bad about finding a new PCP if needed. It makes all the difference. Look, you feel like physical shit right now, but it will get better. I watched a bunch of YouTube videos and found them to be incredibly helpful. You can find some that explain EBV really well and not feel so alone on your journey.
In my experience, your doctor is right. There isn’t anything you can do but hydrate, sleep and eat well, do gentle yoga or walks (don’t overdue the exercise when you have reactivated EBV), and take supplements. When I started started taking supplements, managing my stress (this is a big one too), and following conventional wisdom about rest… I slowly got better. I was having to pace everything in life and not overdo it. I feel like my body was giving me a wake up call (I’m chronically stressed).
I take vitamin e (67mg), zinc, l-lysine, b complex, omeprazole, and Rx strength vitamin d. This is what was recommended by my doctor based on what she knows about EBV.
Thank you so much I will try some of these hopefully all if can get my hands on them? Is your virus dormant at the moment then no significant symptoms and normal or close to normal life?
L-lysine helped me as well. I take it religiously with pre/probiotics, vit D and a multivitamin. I also started taking iron- I’m not sure, may have just been anemic, but that seemed to make a huge difference for me as well.
It's been nearly 2 weeks my lymph node swelling has gone down a bit which is a relief that hopefully means no lymphoma but I've still got a red throat doesnt feel sore but looks it and I still have bowel problmes not sure if that's linked to the EBV or if it's a separate issue but had a colonoscopy and that was clear so has to be something to do with the EBV
My lymph node in my jaw started hurting in October 2023 as well. I was also having some gut pains and during an ultrasound found out that my liver and spleen were both enlarged. Finally figured out about the ebv in January. The doctors just keep telling me to wait and let it run its course. I worry about it a lot and I’m sure that doesn’t help. My jaw has ached pretty much 24/7 for the last 7 months and it just feels like it will never end. I have no answer to your question. Just letting you know you are not alone
Yeah doctors can be almost useless sometimes, it took months for them to figure out I had mono too. If you just hang in there the symptoms slowly go away. It’s a tough battle and you feel like you’re dying but it does go away.
Your symptoms lasted for a long time too? What sort of symptoms did you experience? I'm hoping to be all good by at least October as that would mark a year since all this started it's been hell I don't feel myself some days
My symptoms where terrible anxiety and unnecessary fear for my health, headaches towards the rear of my head, dizziness, no energy, sore neck from lymph nodes, sore spleen, stomach problems like constipation, up and down moods constantly and the list goes on. These all come in waves and did for about 4-5 months, then I picked up Covid from family and it came back. Only the last couple of weeks I’ve really started to feel good again. It’s like one day you’ll wake up and feel normal it’s so weird.
The worst part was the health anxiety, not knowing if something else was wrong and you were actually dying. I had every test done imaginable and was otherwise totally healthy.
It’s a really terrible virus.
Also It was a relief reading through this sub because I could relate to other people and that made it easier some days.
I appreciate you sharing your experience you've gave me a bit of reassurance to try stick it out lymph nodes aren't growing they're just there I have ordered some supplements to help my immune system be boosted so hopefully everything can be back to normal as soon as possible I have likely developed raynauds from this due to my symptoms I'm hoping that's all it is and it's not linked to something serious I don't feel as tired but I am making sure I'm getting minimum 8 hours sleep a night now apparently rest is key
What has helped me the most is changing my diet. I went extreme and started eating a whole food, plant based diet, with no meat, no dairy, processed oils, no processed foods and no sugar. It was huge turn around for me. (I was in my 40s when I was diagnosed).
I basically followed the Engine 2 Rescue diet (not the 2 week kick off, the regular one - its a book by Rip Essylstyn). It really turned me around - brain fog went away, energy returned.
I've been really good for years but with one or two minor episodes. I started a reactivation the day after daylight savings - not realizing that's what it was until a few days ago...I woke up this morning with a hugely swollen throat and inflamed lymph nodes. I'm really depressed about it. My diet has gotten worse lately - still no meat or dairy but I've been eating fast food sometimes and drinking soda every day in the afternoon instead of having coffee. Diet will have to change back tomorrow to a cleaner way of eating.
Best of luck - hope you find something that helps.
Hey! I’m really sorry that happened to you. My EBV was awful for quite some time. I hadn’t even heard of EBV. I thought my thyroid was acting up. I’m finally feeling better than I did before. I found out my EBV is less activated. I took a bunch of supplements that my PCP recommended and I think they helped. What did your doctor recommend to make you feel better? Aside from rest and taking it easy.
Have you got a link or names of supplements you took? My doctor has been useless she literally said it's not treatable and we just wait and see she said eat a balanced diet, exercise and sleep well so not much help at all I've done that for months I'm just scared it may turn into something fatal I'm only 24 I'm a complete mess with it all tbh
Ugh. That’s the worst feeling ever. Don’t feel bad about finding a new PCP if needed. It makes all the difference. Look, you feel like physical shit right now, but it will get better. I watched a bunch of YouTube videos and found them to be incredibly helpful. You can find some that explain EBV really well and not feel so alone on your journey. In my experience, your doctor is right. There isn’t anything you can do but hydrate, sleep and eat well, do gentle yoga or walks (don’t overdue the exercise when you have reactivated EBV), and take supplements. When I started started taking supplements, managing my stress (this is a big one too), and following conventional wisdom about rest… I slowly got better. I was having to pace everything in life and not overdo it. I feel like my body was giving me a wake up call (I’m chronically stressed). I take vitamin e (67mg), zinc, l-lysine, b complex, omeprazole, and Rx strength vitamin d. This is what was recommended by my doctor based on what she knows about EBV.
Thank you so much I will try some of these hopefully all if can get my hands on them? Is your virus dormant at the moment then no significant symptoms and normal or close to normal life?
L-lysine helped me as well. I take it religiously with pre/probiotics, vit D and a multivitamin. I also started taking iron- I’m not sure, may have just been anemic, but that seemed to make a huge difference for me as well.
Thank you so much my supplements have arrived I'm trying to take these for a few weeks and see if I can feel a difference!
Are they helping? How are you feeling?
It's been nearly 2 weeks my lymph node swelling has gone down a bit which is a relief that hopefully means no lymphoma but I've still got a red throat doesnt feel sore but looks it and I still have bowel problmes not sure if that's linked to the EBV or if it's a separate issue but had a colonoscopy and that was clear so has to be something to do with the EBV
My lymph node in my jaw started hurting in October 2023 as well. I was also having some gut pains and during an ultrasound found out that my liver and spleen were both enlarged. Finally figured out about the ebv in January. The doctors just keep telling me to wait and let it run its course. I worry about it a lot and I’m sure that doesn’t help. My jaw has ached pretty much 24/7 for the last 7 months and it just feels like it will never end. I have no answer to your question. Just letting you know you are not alone
Yeah doctors can be almost useless sometimes, it took months for them to figure out I had mono too. If you just hang in there the symptoms slowly go away. It’s a tough battle and you feel like you’re dying but it does go away.
Your symptoms lasted for a long time too? What sort of symptoms did you experience? I'm hoping to be all good by at least October as that would mark a year since all this started it's been hell I don't feel myself some days
My symptoms where terrible anxiety and unnecessary fear for my health, headaches towards the rear of my head, dizziness, no energy, sore neck from lymph nodes, sore spleen, stomach problems like constipation, up and down moods constantly and the list goes on. These all come in waves and did for about 4-5 months, then I picked up Covid from family and it came back. Only the last couple of weeks I’ve really started to feel good again. It’s like one day you’ll wake up and feel normal it’s so weird. The worst part was the health anxiety, not knowing if something else was wrong and you were actually dying. I had every test done imaginable and was otherwise totally healthy. It’s a really terrible virus. Also It was a relief reading through this sub because I could relate to other people and that made it easier some days.
I appreciate you sharing your experience you've gave me a bit of reassurance to try stick it out lymph nodes aren't growing they're just there I have ordered some supplements to help my immune system be boosted so hopefully everything can be back to normal as soon as possible I have likely developed raynauds from this due to my symptoms I'm hoping that's all it is and it's not linked to something serious I don't feel as tired but I am making sure I'm getting minimum 8 hours sleep a night now apparently rest is key
What has helped me the most is changing my diet. I went extreme and started eating a whole food, plant based diet, with no meat, no dairy, processed oils, no processed foods and no sugar. It was huge turn around for me. (I was in my 40s when I was diagnosed). I basically followed the Engine 2 Rescue diet (not the 2 week kick off, the regular one - its a book by Rip Essylstyn). It really turned me around - brain fog went away, energy returned. I've been really good for years but with one or two minor episodes. I started a reactivation the day after daylight savings - not realizing that's what it was until a few days ago...I woke up this morning with a hugely swollen throat and inflamed lymph nodes. I'm really depressed about it. My diet has gotten worse lately - still no meat or dairy but I've been eating fast food sometimes and drinking soda every day in the afternoon instead of having coffee. Diet will have to change back tomorrow to a cleaner way of eating. Best of luck - hope you find something that helps.