Cytomegalovirus CMV positive- has anyone experienced this ?

Hi has anyone had a positive immune test for this virus CMV linked to autoimmune disorder or hepatitis?

It’s come up in my blood tests with raised liver enzymes, enlarged liver on ultrasound.

Rheumatologist nurse wasn’t familiar with it but on research it seems there is a link.

I’m under investigations for CTD after positive ANA and symptoms which all worsened after a virus and then guillain barre syndrome January.

Have telephone appointment with Hepatologist Friday and more blood tests requested too.

Each week Ive more questions raised - it’s very complex but just want to feel better and pain free too ! No medication suggested as yet.

Thank you xx

[BonnyB]

I'm new to all of this, so I'm sorry but I'm of no use to you at all.

I hope you get done answers on Friday and pain relief.

Take care

[Hidden in reply to BonnyB]

Thank you - me too x

[BonnyB in reply to Hidden]

Just been looking everything up, yes there is a link!

You haven't had lupus diagnosis yet?

Really strange that a rheumatology nurse wouldn't know about this and the connection.

[Hidden in reply to BonnyB]

Thank you !

I first spoke to Rheumatologist 4 weeks ago via telephone consultation, due to positive ANA abs symptoms he suggested CTD but was starting more tests. Numerous blood tests in past few weeks and ultrasound later and focus is the liver, which has obvious issue, but no other mention yet of the CTD. Maybe it’s getting the acute issue sorted first approach??

All my joint , nerve pain etc is still going on and much worse than ever but no one wants to discuss that at the moment?

The rheumatologist nurse said he had to google CMV and suggested I did.

I did of course and been a nurse found a few research articles about it which I emailed into him! His response was, “sorry o shouldn’t have told you to Google it, the Hepatologist on Friday will answer all your questions “

So I’m no wiser really ?!

Xx

[BonnyB in reply to Hidden]

It's very frustrating but as I said in my post last week, no diagnosis is better than the wrong diagnosis! Having the wrong meds and side affects of the wrong meds on top of everything else would be horrendous.

Please let us know how you get on.

I see rheumatologists for the first time on Monday. From looking into things on here etc I'm realistic - I'm not going to be getting a diagnosis anytime soon by the looks of it. How silly am I , originally thought, yes hospital appointment I'm going to find out what's up with me .

Take care

[Hidden in reply to BonnyB]

Thank you , yes your right! I was supposed to have had a referral 7 years ago to rheumatologist and it never happened ( bad GP experience)

Only due to getting Guillain Barre syndrome after a virus in January has it all sprung up again, positive ANA symptoms etc. And now on another journey!

But absolutely better to get the accuracy!

Good luck with your appointment too

Xx

[BonnyB in reply to Hidden]

How are you doing?

[Hidden in reply to BonnyB]

Hi ✋about the same but have had a good chap with the Hepatologist today though was so lovely. So my immune system has had such a serious attack he said from the Guillain Barre syndrome all aspects of immunity are affected. Have a virus which was dormant and triggered off ( family of herpes simplex ) CMV and inflammation of liver which is trying its best to cope, sone liver function is normal sone not so . Metabolic system out of kilter too and in ore diabetic state.

So, more bloods and a new non invasive scan for liver. He is keeping a close eye on everything.

Next appointment in 1 week and Rheumatology in 2 weeks.

So still in investigations but I’m glad they are been very thorough - it’s always going to be a journey not a short run to get all the answers.

How are you ? X

[BonnyB in reply to Hidden]

Glad you feel like you've been listened to. Sounds like you're getting there and on the right track.

I'm still the same, very tired, aching.. and this chest pain still there, it's really getting to me now, spreads across my right breast area into armpit and back. I'm at my first rheumatology app Monday so hoping they can shed some light on it all X

[Hidden in reply to BonnyB]

Thank you yes I feel reassured to be honest.

I’m so sorry your suffering, I also gave chest pain and radiates same as yours. I thought it was my lungs of heart but the blood tests said not. But with this widespread inflammation and others info on here re CTD /lupus who knows?

BP was high and on meds for that now.

Let me know how you get on Monday - make a list before you speak to them !

Xx

[BonnyB in reply to Hidden]

It's not lungs as in infection, no coughing, spitting up or anything like I've had when I've had a chest infection or pleurisy so maybe it is inflammation!

I have, got to laugh my husband asked if I would like him to fetch a roll of wallpaper for me to write on 🙈😆

[Hidden in reply to BonnyB]

😂😂👍🏻👍🏻

[Hidden in reply to BonnyB]

Did you get on ok today with the appointment? X

[BonnyB in reply to Hidden]

Aw thank you for asking. Sort of, I think it'll be ok with Meds- fingers crossed. I've posted and can see you've liked it so I won't bore you and repeat.

Hope you're doing better X

[Hidden in reply to BonnyB]

I’ve just seen it! That’s good I hope it helps. I’ve had bad weekend really and skin reaction just from short walk outside 20 mins like sunburn and joint pain so bad. I did email rheumatologist nurse helpline - they won’t start any meds yet as liver tests still too high .

A waiting game .

Take care x

[BonnyB in reply to Hidden]

Oh no! It's a hard time for you. Hope , really hope it eases up for you X

[Sangu1]

Hi I would really be interested in knowing what they say to you about CMV and liver issues. I have CMV antibodies, I have ongoing chronic inflammation and fatty liver. They have not been able to figure out yet. Gastro wants to do colonoscopy then endoscopy then sigmoidoscopy. I’m not happy to have him cut around until he has ruled out cmv effect on the liver but he has done some test. I’d love to find out what they say to you. Would you be able to share any information you found in CMV. I’ll try to search it, please!

[Hidden in reply to Sangu1]

Hi, so my initial test was for CMV IgG and IgM, result showed I had recent activity of this virus. Hepatologist said it’s a common virus often we gets as kids and lays dormant like herpesvirus. I’ve had a 2nd blood test for CMV PCR which will show if it’s active now. They also do HIV test as the body has no immune response if that was positive and CMV then is more serious.He said they may do a non invasive liver scan (new machine!) too. Next appointment next weekend so will know more then.

I’ve had colonoscopy/endoscopy etc in past with IBS and GERD. Not pleasant and maybe they are doing this due to other symptoms??

The CMV is seems has glandular fever type symptoms when active and can affect the liver.

I Googled it and then you find so much info but is it reliable ? And Dr Google isn’t always best!

I’m learning a lot and underestimated the complexity of Autoimmune disorders.

Good luck and I’ll let you know if get more info next week 👍🏻

[Sangu1 in reply to Hidden]

Thank you so much. I’ve had CMV IGM (previously). I have IBS but not much symptoms. Now very high ESR, IGA and CRP. Previous CMV IGM. It’s so confusing. My Gastro has not done anything non invasive yet. I’m not happy about doing BIOPSY of with endoscopy and Colonoscopy straight away.

I would really appreciate more information if you learn anything as I can ask him to do that.

Thank you.