EBV effects on organs

[morgan_25]

Has anyone ever experienced any kind of organ issues due to EBV, HHV-6, etc?

 

[andyguitar]

Each of them can effect the liver. EBV is the most problematic. If you want to look into this @morgan_25 try putting something like this into your search engine Effect of EBV on liver function/ or kidney function/ or any other organ.

 

[keepswimming]

When I had EBV it temporarily caused liver damage (hepatitis), also my spleen was swollen. But both recovered within months and function normally now.

 

[morgan_25]

When I had EBV it temporarily caused liver damage (hepatitis), also my spleen was swollen. But both recovered within months and function normally now.

That’s great to hear!

 

[andyguitar]

When I had EBV it temporarily caused liver damage (hepatitis), also my spleen was swollen

This is the main reason that alcohol should not be drunk when having EBV.

 

[morgan_25]

This is the main reason that alcohol should not be drunk when having EBV.

You know I never really thought of that that’s a good point. Alcohol makes me feel really bad anyways though.

 

[andyguitar]

You know I never really thought of that that’s a good point

Have you never heard that before? Makes me wonder how many with EBV have continued to drink. In the uk the advice used to be not to drink for 3 months. That was years ago so I dont know if it's now thought to be okay.

 

[morgan_25]

Have you never heard that before? Makes me wonder how many with EBV have continued to drink. In the uk the advice used to be not to drink for 3 months. That was years ago so I dont know if it's now thought to be okay.

Okay so the UK is much smarter than over here in the states. First off, I live in Arizona and my primary care literally sent me multiple referrals all over Arizona and literally, NO ONE had a specialist for ME/CFS or anyone that knows anything about mono or EBV. It’s actually ridiculous I have been through hell trying to find someone who will treat me and be open to things I have to say regarding my health.

 

[morgan_25]

Have you never heard that before? Makes me wonder how many with EBV have continued to drink. In the uk the advice used to be not to drink for 3 months. That was years ago so I dont know if it's now thought to be okay.

So no, I’ve never heard that before. It makes sense though because I know when I got blood tests done my cortisol was high, which is what you adrenal glands that sit on top of your kidneys make. So that’s a good indicator that alcohol is hard on your kidneys if you have EBV and since our liver is basically our bloods “filter”, if it’s got EBV infection I see how that makes sense.

 

[andyguitar]

It’s actually ridiculous I have been through hell trying to find someone who will treat me and be open to things I have to say regarding my health.

Yes it is. The lack of knowledge about mono/EBV you have had from your Docs is very difficult to understand. It's a very common infection and it's well known that it can cause liver problems hence the alcohol ban. Using drugs to treat it is also rare here. Again due to the possibility that they could make any liver problem worse. Still at least you have found out something useful.

 

[morgan_25]

Yes it is. The lack of knowledge about mono/EBV you have had from your Docs is very difficult to understand. It's a very common infection and it's well known that it can cause liver problems hence the alcohol ban. Using drugs to treat it is also rare here. Again due to the possibility that they could make any liver problem worse. Still at least you have found out something useful.

Yeah for sure and I’m almost convinced that I made just need to fly over to the UK to get treatment 😂 I believe over in the UK they have been treating EBV with antivirals right? Correct me if I’m wrong but that’s what I heard. And like I said, I don’t drink much anyways because it is definitely a trigger for my extreme body aches. I really think the US would highly benefit from taking a page out of the UK notebook. Our foods here are trash, there are so many things that is put into our food that is illegal in other countries. Drives me crazy.

 

[keepswimming]

Yes @andyguitar the medical advice is still don't drink with EBV. I rarely drink but the week I came down with EBV (before I realised I was really ill) I was at a friend's house and had some wine. No idea if that made the liver problems worse. A friend of mine had EBV the week of her wedding and drank quite a bit of alcohol, she ended up in hospital with liver damage/hepatitis. She's fully recovered now with no lasting effects.

@morgan_25 I'm in the UK and as far as I know they don't offer antivirals, I certainly wasn't given any! Just told to get lots of rest to recover, and take paracetamol and ibuprofen to keep my temperature down. I was very close to being admitted to hospital with the damage it caused to my liver. However they told me even if I was admitted to hospital, there was nothing they could do except track my liver function. Rest and drinking plenty of fluids is the treatment. Which I did at home!

 

[andyguitar]

Yeah for sure and I’m almost convinced that I made just need to fly over to the UK to get treatment 😂 I believe over in the UK they have been treating EBV with antivirals right?

No antivirals are not used here. Just the 2 things @keepswimming mentioned.

. I was very close to being admitted to hospital with the damage it caused to my liver.

Sounds like you had a near miss. Could have been pretty nasty

 

[morgan_25]

Yes @andyguitar the medical advice is still don't drink with EBV. I rarely drink but the week I came down with EBV (before I realised I was really ill) I was at a friend's house and had some wine. No idea if that made the liver problems worse. A friend of mine had EBV the week of her wedding and drank quite a bit of alcohol, she ended up in hospital with liver damage/hepatitis. She's fully recovered now with no lasting effects.

@morgan_25 I'm in the UK and as far as I know they don't offer antivirals, I certainly wasn't given any! Just told to get lots of rest to recover, and take paracetamol and ibuprofen to keep my temperature down. I was very close to being admitted to hospital with the damage it caused to my liver. However they told me even if I was admitted to hospital, there was nothing they could do except track my liver function. Rest and drinking plenty of fluids is the treatment. Which I did at home!

Wow that’s crazy. That’s kind of scary though cause it’s like what if you are like, possibly dying from it or something? What do they do then? I think I may have been thinking of something here then. I had heard that anti vitals were being used to treat covid because it can be a good option for people with EBV and CFS. May have been her in the US though.

 

[morgan_25]

No antivirals are not used here. Just the 2 things @keepswimming mentioned.

Sounds like you had a near miss. Could have been pretty nasty

Okay got it. I may have been thinking of them using antivirals to treat covid, but that may be here in the states.

 

[andyguitar]

Wow that’s crazy. That’s kind of scary though cause it’s like what if you are like, possibly dying from it or something?

The problem with using anti-virals is the possibility of an adverse reaction to them. Which might make things a lot worse. Although it's said to be rare for them to cause liver damage it is possible. So lets suppose someone is very ill with mono. Liver (and spleen) are affected. Do you give them an anti-viral to try to control the infection? Might make the liver worse. Tricky aint it?

 

[morgan_25]

The problem with using anti-virals is the possibility of an adverse reaction to them. Which might make things a lot worse. Although it's said to be rare for them to cause liver damage it is possible. So lets suppose someone is very ill with mono. Liver (and spleen) are affected. Do you give them an anti-viral to try to control the infection? Might make the liver worse. Tricky aint it?

So can they do anything that could treat the issues with the liver and spleen so that a treatment for the mono could be administered?

 

[andyguitar]

Steroids can be used to treat viral hepititis. So what happens when you do that? It suppresses the immune system which might make the infection worse. Out of the frying pan and into the fire.

 

[EddieB]

From all the scans I’ve had, they tell me I have a couple of cysts on my liver and one on my kidney. They are supposedly benign and “nothing to worry about”. I suspect they have something to do with EBV.