Adult Cytomegalovirus/CMV Mono?

NO current EVB, just CMV, sorry, brain fog.

 

Jen thank YOU for replying I have struggled finding CMV stories too. But our stories sound similar. Here in Canada the labs only tell us positive or negative and don’t give the doctor or the patient “numbers” so that’s why I had to do a little digging. I am now convinced I had CMV.. 6 months in I feel way better but definately not 100%. I work with children and am relatively fresh at my job so I don’t doubt I caught it from work.. apparently lots of people spend the first few years working with kids constantly sick as they catch every bug and build their immune systems up. 

Jen, you’ll get there! I know the fatigue and breathlessness is so frightening I used to be scared to fall asleep at times I felt so sick I was frightened I wouldn’t wake up! But I did... so no matter how unwell you feel remember you will make it after this and every flu or cold after will be a CAKEWALK! 

Xo 

Totally agree with that Van, after you've been through mono / GF then you are more resilient for coping with other more regular viruses and things. Sometimes colds and things can hit you a wee bit harder in the first year or two afterwards, but that's nothing to worry about it just a natural body reaction and in the long term the virus becomes toothless and can do you no more harm.

Craig

I'm from Canada too. My blood was taken in lab and the test was done in public health. My dr said it the test has no value since everybody carries the virus. So I'm stuck here, not knowing even if I have mono or not.

Not related to the topic but I wanted to become an ECE and I told them that I feel unwell, they advised me to stay away from daycare as I'm going to catch virus very often.

So why do you think your is more like CMV not EBV?

Sorry you might have this too Christine.

There are lab tests that can determine if the virus is active and if it is EBV or CMV or both.. Here is a link.

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Thank you… Hope you feel 100% soon.

Hi Christine,

This virus has been a doozy, EH? Hahahahaha.. had to throw that in there. I think it’s CMV because I got tested for EBV about 2 months after intense onset of symptoms and that one also showed past infection .. though I was mildly symptomatic even 2 months prior to that so really it could be EBV caught too late or CMV. I’m thinking CMV because I didn’t have the super painful sore throat that is more usual with EBV from what I read... mine was just scratchy. But it could have been either virus really. It is so frustrating that we can’t see the numbers because it would give us hints if the viral load is increasing or decreasing, high or low. I’ve read various forums where people’s early antigen was “negative” but only by a margin (ex: positive value was 10.6 and theirs was 10.4). 

Good luck Christine! 

So mine is EBV then. My pain symptoms now are with throat, mouth. My EBV blood test showed a past infection too. When I asked my dr if these stmptoms are like monk she said no way mono could last for 1 year.

Feel better!

Hey Jen, how did your appointment with the infectious diseases doctor go?  

Hi Amanda, they have run a number of tests and I am clear on most of them (they are looking for a reason why the CMV activated.) I have another followup next week, so we will see what the ID doctor says. Thank you for asking. How are you feeling?

Christine, 

I am seeing a specialist, an Infectious Disease doctor. Just fyi, he told me that CMV lasts from six months up to two years..

Good luck with your follow-up appointment Jen, take it as reassuring that most of the other tests are fine, although I know that can be very frustrating when still feeling so poorly. Keep trying and remember what the docs say not the be all and end all - some of them can be so inconsiderable in their manner and forget how worried and anxious this virus can make people and be very dismissive or whatever - whatever they say you are going to get better!

Craig

Hey Je n, 

i'm going to through the same exact thing you are! i don't know how many hours of googling it took me to find this forum! how did the second follow up go? this experience has been brutal. i'm 8-weeks in, hoping my summer isn't over

Oh no, you are!? I am so sorry… It’s really hard to find information on CMV, isn’t it?   Most of the articles that I found are fluff about CMV. That is why I posted here too.  

Are your lymph nodes in your neck just painful and awful too? Along with the fatigue, aches, etc, but the lymph nodes. yikes.  

May I ask, what is going on with you? Have you seen any specialists or plan to? How are you treating the CMV at home, for example are you taking any herbs or vitamins? Just curious. 

The follow up, the Infectious Disease doctor ran a ton of lab tests, nothing came back as suspicious , but apparently CMV doesn’t typically just activate. However,  I do have an underlying condition, then caught a nasty  flu and  had strep throat simultaneously back in February. Then the CMV hit me.. my immune system tanked in other words. That is how I am looking at it anyway.  

Because of my underlying condition, they did refer me to an immunology doctor to review everything in a few weeks on May 31. My GP doctor is still concerned we should be looking for an autoimmune issue, but I can’t keep worrying about what I can’t control. Now, enough about me, how are you dong with all of this??

Good luck with your immunology appointment Jen, that's really good you've got that to go and I really hope they can put your mind at rest that everything is being caused by this virus, which is most probably the case, and not anything else - but of course it's very wise to get checked out I remember seeing a specialist like that too when I had mono and it put my mind at ease a bit even though he couldn't take it away instantly (things will get better in time).

So sorry to hear you're having a really hard time with it Code Monkey, the forum here is a really good one the people are so nice and supportive and it's more full of people providing practical help and support for each other and offering hope and encouragement rather than the scare stories which you generally find on google - it's always the worst stories that get the posts on there, and remember that vast majority of people do recover from mono (with EBV or CMV) even though it can take a little bit of time for some unfortunately - hang in there and remember you will get there!

Craig

Absolutely, Craig!

Thank you, I think it’s just a low immune system and a couple of underlying issues regarding my CMV, but better not to worry and be on the safe side! I agree. 

Best to just have everything checked by a specialist. The one thing about CMV, at least it goes up and down during the day, for me at least.  I am finding if I sleep a little more than usual, the lows regarding energy are less intense, some of the time. 

Thanks for always having a kind and supportive word, Craig. Very much appreciated! 

Hey, 

I made a detailed reply, in it I shared an amazon link to the supplements I'm taking and i think it got flagged.

I was really bad the first 2-4 weeks. moderate sore throat and i had to massage my lymph nodes in my neck to be comfortable! 

I was diagnosed with CMV after feeling weird for 2 weeks. My doctor caught it right away. He did a panel for antibodies and another for virus dna itself. that was about 3-4 weeks ago and he said it was "leaving my system" but i still feel quite ill. 

I am (or was) an elite-level bike racer, so i am seeing a performance specialist in the coming weeks to see if I can get back on the bike. I used to ride 15-20 hours a week, now i am like 3 hours a week and it takes all my strength and motivation to get on it. That is actually why i reached out to you. I was thinking if seeking a sports specialist was the right thing to do, but if the Infectious Disease doctor couldn't help you, it makes me feel like it would probably not help me either.

If it makes you feel better, the 2008 world cycling champion got CMV and i've found other blogs of seemingly normal, healthy people getting CMV and getting better within 5-10 weeks. So it's not just people with HIV as some of these websites suggest.

It is soooo strange though. I feel like I'm either having a mild panic attack or am sooo tired. I also feel like "anxiety" and "fatigue" aren't the appropriate words to use. The best way i can explain it is I was once hospitalized for broken bones, it feels the same way i did when i had to come off pain killers

Thanks Jen and good luck again with your appointment! Yes you're doing the right thing to get plenty of extra rest and sleep, that is sensible at this time while your body is going through this - and remember you will get through it and get better again, totally I believe that for you.

Craig

Hey Code Monkey,

I'm so sorry this horrible virus has affected your sporting career, it really is horrible I know when you enjoy doing that and are able to exercise at a certain level and can't because of the virus - I was the same during the virus I did a lot of long distance running before it and it all came to a halt when going through the virus, but want to reassure you that I was able to return to it again once the virus passed, it took a bit of time but just to let you know that there is hope today and you will get through this and get better, even though it's such a hard and awful experience when going through it at the time and unfortunately lasts longer than most people hope or expect.

Craig

Geez, I am sorry about the racing. I hope you can get back to it soon. Glad your doctor caught the CMV so quickly.   I can relate a little, I have a fitbit and try to maintain at least 3 miles a day and count calories.  Prior to CMV, I typically hit around 6 miles a day AND go to the gym. The doctor did say, the more I push our bodies, the long CMV will take to go away.   

I also understand about the panic feeling when the fatigue hits you have to sleep. I have had to pull over driving home from the store at least twice because of a similar feeling! 

The Infectious Disease doctor was helpful as far as just running every imaginable lab test on me just to be sure there was no autoimmune issue hoping up.  It really wouldn’t hurt to have someone do the same for you too? They can’t give you anything to make this go away any faster. I am not sure about you, but I am taking a few recommended vitamins (B complex, 2k-4K of vitamin C, D, Multi vitamin and  also elderberry, a natural antiviral. Also, ginger tea for the nausea helps). Pretty much all we can do I think…

It sounds like I might be a couple of weeks ahead of you with the CMV?  I can tell you that I thought I was on an upswing and walked about 5 miles. I paid for it for three+ days, I could hardly move. Caution…Temperance seems to be the name of the game… I am not good at that! How about you? lol

Hi Jen,

You definitely are doing all you can do to help yourself by the sounds of it, that's all you can do and trusting God that things will come. It's so frustrating when you are used to being active and then can't be, it's still amazing if you're able to manage 3 miles a day, remember that is still more than most people would walk every day so don't beat yourself up for not managing more, remember your body is under extra strain and you will get back to more as recovery grows - so sorry to hear you felt worst after walking the 5 miles, sometimes it's just trial and error with your body during this, learning from experience what we can and can't handle at different stages. But remember it won't always be this way, things will get better for you Jen I truly believe that!

At least the doctor you seen ran some tests, it's always useful just to check things and hoping it can put your mind at rest that it most likely the mono and nothing else there. Sometimes it's just time with this thing which is hard to deal with each day when going through it, but remember there is recovery and there is hope!! Thinking about you and believing a breakthrough is on its way!

Craig

hey J en,

i thought i'd circle back. Semi-interesting story.

i went out for coffee with my mom and her friend who is a retired MD. he asked if i had my labs after talking about what i was going through and found that the test for CMV DNA was actually negative. He said it is extremely unlikely i had an active infection. Went to a second doctor and they agreed, did a huge array of tests and came back positive for West Nile. This is my first serious medical issue, now i know to always get a second opinion!

Not sure if it'll help you, but for me supplementing with 5-htp and L-tyrosine has changed me a lot. Still far from 100% but brought me up from being a recluse to being a functional human being. I also live in a state with medical marijuana, and taking cannabis oil at night makes a HUGE impact. 

I hope you get better. living with long-term illness has completely changed my perspective

Hi Code Monkey,

So sorry to hear you are having to deal with this awful situation, I know words can't describe what kind of pain and suffering you must have been going through with this. It shows real courage that you have sought things to help yourself and made progress because of that - you should look at that as a real achievement. Just really hoping and praying that God brings complete healing from this awful thing you're going through - it's so hard to hold onto hope in the midst of trials I know that for sure, thinking about you and praying for God's help.

Craig

Oh my gosh! Are you kidding? How do they treat that???? You poor thing geez… So glad you received another opinion!  How long does that typically stay active?    

(I am a firm believer in second opinions. A second opinion caught stage-4 cancer in someone I know, the first doc missed it…)                                                

My regular MD doctor sent me to an Infectious Disease doc, they ran a ton of  tests, the CMV came back positive with a high viral load a second time, that was about two months ago   The CMV is still hanging on me, so I was just sent to an Immunologist. They also did a zillion tests, not sure about West Nile, but some of my immunity tests came back low, so the cmv is still there.  Interesting, there was no CMV in my DNA either….. Hmmmm I will look to see if  I can tell if they tested me. I am out in nature a lot…

 

PS. thanks for the supplements!  I have been juicing spinach, ginger/kale and other organic veggies a lot to boost my immune system, but will try that too. Thanks again for the info. Let us know how you are..

Hey Jen,

So sorry to hear you're having such a tough time with this CMV, that sounds awful and really hoping and praying for recovery for you and that you can be feeling much better soon. You've been through such a hard time from the sounds of it, you're doing the right thing getting tests and seeing immunologist, that's all you can do and just trust in God and don't put any pressure on yourself at this time, allow your body time and space to recover as it's under such stress with this virus. Thinking about you and still truly believing you ARE going to get better Jen, I truly believe that - hoping things can settle and start to move in the right direction really soon.

It's not easy to keep spirits up when going through such hard times, I know that for sure, so definitely remember that this is only temporary and you will get back to full health again, absolutely 100% I believe that. Do keep on at the docs, that is amazing about your friend, yes second opinions are good and it's okay to persist / question a doctor because you know your own body better than them, just hoping that there can be a good doctor that helps you Jen and gives the right advice / treatment - so many seem to misunderstand mono.

Hang in there and you will get there! I genuinely believe that and trusting God!

Craig

 

Thank you for the kind words and encouragement. 

Hi Jen,

I was diagnosed with Mono August 6th and my doctor is now putting me on meds for hypothyroid.  I am in the "normal range" but at the lower end of normal.  He said that this should increase my energy levels.  The plan is to get my energy up so that I can exercise which will increase energy and mood.  Not that my mood was bad, but this Mono has put me in sort of a funk off and on.  My doctor also really wants me to take an approach to better eating habits and exercise which hand in hand will make a difference.  Oh he also mentioned getting plenty of rest/sleep. 

I return to work Oct 3rd which I am looking forward to.

Ask your doctor to check your thyroid hormone levels as well as Vitamin D.

christine how are you feeling at the moment? im in the same boat as you, not knowing if i have it 100%