Adult Cytomegalovirus/CMV Mono?

Hi Carol,

So sorry to hear you have been so unwell with CMV this past few months. Mono is a horrible illness it really, is, I really do watn to reassure you that it does get better with this and full recovery does come. It did take me a number of months to get over it and at times I thought I never would, but thanks to God's help I did. Unfortunately it can still be very normal to be feeling like this after 4 or 5 months, but remember things will get better absolutely they will and this doesn't last forever - your full body resilience and health does come back again, it just takes time with this unfortunately - hang in there and thinking about you.

Craig

Sorry you have CMV too. Yes, you have all the same symptoms as me. The nausea included, it comes and goes. Look into Elderberry, be careful if you are taking other prescription medications, double check any interactions with your doctor, as it’s a very strong antiviral. I think I was taking Sambucocl. Try to get lots of rest. Vitamin C throat drops help a little for the intense throat. Sorry you are feeling so bad..

I tested positive for CMV, gosh in March, 2018 and I am still about 60%. The intense sore throat has gone away, but the fatigue and muscle aches/lymph pain still comes and goes. I saw several specialists, the Infectious Disease doctor told me CMV lasts for minimum of about six months and can last up to two years, if you don’t rest and take it easy. So, be careful.. Take lots of vitamin C and eat really healthy.  I hope you feel better soon.

Sounds like really good advice Jen and that you are doing all the right things. Still believing you are going to fully get better and back to 100% or as near as - just so frustrating the length of time this takes. Thinking about you and rooting for you and praying for God's intervention and protection and grace in your life and situation.

Craig

Hi Sam,

So sorry to hear you are going through this horrible virus, I really hope and pray for improvement and recovery soon. It wasn't CMV but EBV that I went through, which I think basically both cause the same illness, and remember my skin feeling roasting hot at times when sweating with the low grade fever. It was horrible, but want to reassure you that this does go away with time and there is recovery from this illness. Hang in there and thinking about you - remember you ARE going to get better and through this. Take it from me as someone who struggled with it and was unsure about the future at times, but God brought healing after some time, and I believe He will do that for you Sam. Thinking of you!

Craig

So sorry you have the CMV too. I have had a bad cold I can’t quiet get rid of this past month and the CMV is still there, I just don’t feel “back to normal yet.”  The Infectious Disease doc said CMV usually hangs around for a bit, usually about six months minimum.  I am taking Sambucucol off and on. It’s an Elderberry immunity boosting supplement, along with about 3K milligrams of vitamin C, along with my regular multi vitamins. Also juicing too.  Have you found anything helpful? 

1) chills without having a fever? -YES

2) your skin feeling “hot” or on “fire” but felt normal to others.-Yes, felt like I had a fever off and on too.

Hi Craig, 

Thank you so much for your thoughtful words and prayers. 

I’ve read a lot of articles on the two viruses and EBV is challenging to deal with.  I’m curious did you have a positive IgA, IgM, IgG AND nuclear antigen test? It sounds like you are several months out, so have you had your antibody levels retested? I’m asking because EBV residual antibody infections in adults haven been linked to certain cancers ( https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4271109/).  This is a review article so it’s not a direct experiment, but I think it has a good review regarding the importance of staying on top antibody levels. I personally have a high IgG EBV. 

If you have any questions please don’t hesitate to reach out to me. I’ll be happy to help in anyway possible.  I hope my above reply helps put you in control because doctors are not perfect. 

Your friend, 

Sam 

Hi Jen, 

Thank you so much for your reply. I’m so sorry you’ve been dealing with this. It sounds like you are doing much better. 

Thank you for the great info. 

I’ve seen several ID docs and hematologist and they’ve told me on the average the infection in a healthy adult should last about 4-6 weeks. Any residual symptoms is not from the virus but actually from the residual hyper immune system releasing antibodies and ck. So I’ve actually been trying to let my immune system “cool down.” I don’t know your exact medical history, but if you are a healthy person without any major medical conditions (hiv, renal transplant, etc) maybe try to hold off on “boosting” your immune system which is working overtime without a virus in your system to clear. If you really want to make sure the virus has cleared from your system, you can always have a PCR test which looks for the dna of the virus in your blood. I know my advise is the exact opposite to what you have been doing, but maybe give it a try. 

Here is a great article on cmv infection in healthy adults and the length of infection. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5684088/#!po=36.2069

Please don’t hesitate to reach out to me if I can be of any help. 

Together, we can all over come this horrible strange little virus that thinks it can take over our lives 💪

Hi Sam,

Thanks for the message and kind words. Oh well it was 12 years ago now since I had mono, so a long time ago and only grateful to God that He got me through it and brought healing and restored health. I don't know what the specifics of my blood tests were, only that it showed I had mono. I know there are some folks on the forum though who are good at interpreting and understanding blood results, hopefully they can post and offer some help.

I went through the same worries that maybe you and I know lots of other folk with EBV have when they read that it can be linked to more serious issues. The thing that I try to counter it with is that such a high percentage of the western world population, as much as 90% I've read, and certainly 75%+ it states at least most places, are infected with EBV virus at some stage in their lives, many as children or babies when they don't feel the full effects of this illness like you do as an adult. But remember the vast vast vast majority of these people don't develop any other issues or anything from it and are healthy once they recover, so just try and remember that and remember that anything like that is not the norm and that the vast vast majority of people recover from this virus fully - sometimes it takes time unfortunately yes - but they do fully recover and have no other issues.

I truly believe you're going to get through this and fully recover Sam, trusting God and praying for His help and healing hand and intervention for you today.

Craig

Thanks Sam, really hoping and praying for improvement and breakthrough for you soon in how you're feeling and your recovery - remember keep trusting in God, He will pull you through and restore your health, I truly believe that! Hang in there and thinking about you today. Praying God protects us all on the forum through the time of the virus and gives us the victory to overcome in His perfect way and at His perfect timing, and for no other harm to come to us, in Jesus' name. 

Craig

Thank you Craig, beautiful words! 🙏 

Hey Sam,

Thanks for the kind words too and you have been doing all the right things by the sounds of it, getting these checks and tests from doctor. I just really hope and pray everything settles down soon, I know from my experience with EBV that I was still struggling quite badly at the 4-5 months stage, but that a few months on from that things started to really change and get better - so want to just reassure you that there is most definitely still hope and whether it is caused by EBV or CMV, this illness does get better with time and what you've been through up until now, these first 4-5 months, are BY FAR the worst in terms of intensity and really hoping and praying everything settles down soon.

I still truly believe that you are going to get that breakthrough in your recovery Sam, still thinking about you and rooting for you and believe that God is there and is going to bring healing - 'I will rescue my people'. Hang in there and hoping for a more settle weekend and week ahead. Message any time!

Craig

The Infectious Disease MD that I saw, said CMV lasts from six months - two years. I am right about at the six month mark, so not too far behind you I think.

Sam, have you been having any bad colds too? I keep getting them and they just hang on, but personally I think part of it is the CMV too, the fatigue and joint pain, etc..  I need to get checked for a sinus infection this week, maybe I will ask to have my IGM levels checked again too

Hope you feel better soon.

Hey Jen,

So sorry things have been so tough for you this past six months, just hoping and praying for a breakthrough and for your recovery. Remember God is the great physician, and I truly believe that He is going to bring healing and recovery for you and Sam and that it's not going to go on and on like this indefinitely. Hang in there and thinking about you both.

Craig

Yep we’re cmv bodies! I’m at the 5 month mark now. 

I’m sorry you keep getting colds. That’s hard. I can’t imagine that. I have not had that’s issue... yet.  These days I keep my distance from people cause I just don’t need any new germs confusing my health  

Here are my symptoms at this point: 

Internal chills 

Skin feeling hot 

Some night sweats 

Few hours, many one day of relief  

How many of the symptoms above do you have? Any additional symptoms I should be looking forward to? 

I think rechecking your IgM is a great idea. Here is a list of labs I recently had done if you would like to recommend them to your doc. 

CBC w diff 

CMP (to check your liver enzymes since CMV loves the liver)

Cmv IgG, IgG and PCR (I think PCR is the key)

Flow cytometey on peripheral blood (to rule out any under lying blood malignancy which may have weekend your underlying immune system)

SPEP with immunofixarion (to look at overall anybody profile. They also use this test for multiple myeloma. M-spike finding on this test has been linked to CMV) 

LDH, c reactive and sed rate (inflammatory markers) 

I got no problem telling docs what to check. It’s my health and they know I’m in charge. 

Please let me know if I can be of any help. 

Greg, you rock! Thank you for all your support and amazing words. 

You're welcome Jen, I remember from my own experience of mono how awful this was to live through and how hard mentally as well as physically and emotionally the whole experience was. But the day will come when this is all over and your body and mind feels strong again, knowing that this thing is in the past. It's hard to see when in the midst of it and frustrating when it doesn't come as quickly as you anticipated or hoped. It's so hard to be patient and live through this - just coping with each day and not looking too far ahead, trusting God with the bigger picture, is all anyone can do in the midst of this. And I truly believe you ARE going to get through this and won't have to go through anything as intense as you did this first six months again, even if it takes a little while for full recovery, the intensity I hope and pray (and my experience was) lessens with time until you reach full recovery (which can happen sporadically, almost overnight, after months of feeling 'stuck' 'at the same level - this seems to be a remarkable feature of this virus for many people).

Craig

Hi Sam,

You sound like a man after my own heart, I am the same when it comes to blood tests and things try to get the doctor to do the maximum, although it's not always easy I've found getting the doctor to agree and I've had some run ins which I know I shouldn't have got myself involved with - hoping that you have a good doctor who is compassionate and understanding and helpful, these kind of doctors are precious and hard to find!

Although it was EBV I had, the symptoms you describe sound SO MUCH similar to those that I had. And without doubt they do get better Sam, I know after 5 months you must be so tired and weary of the whole thing, not least of all physically and mentally drained, that's how I felt after that point and my confidence really took a battering too. But there IS hope and IS recovery, and I believe that God is working in your situation Sam and that recovery and restoration is ahead, praying for that breakthrough to come soon and if it still takes a little while for full recover, don't panic because it MOST DEFINITELY WILL happen!

Craig