I am extremely worried my Mono was a misdiagnosis, should I go back to my doctor?

Ears, nose and throat
1

I was diagnosed with Mono about 3 months ago. It started with a headache, lowgrade fever, and overall not feeling well. I have gotten tons of rest, stayed hydrated and healthy, and I am still feeling the same as I did on day 1. From all that I read, some people have symptoms that last a long time with Mono, but I still have all the symptoms, most notable the fever… every day, for usually the entire day. I try to stay off google but it’s hard not to when my own doctor doesn’t know why I have had this for so long. My lymph nodes were never and aren’t swollen, but I can’t help but worry that it’s something worse. My WBC and RBC counts are both within normal range.

Has anyone else experienced a low grade fever with Mono this long? Also, has anyone experienced all over itching with mono? I’ve been getting itchy all over my body for about 4 days now.

Thanks .

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Edit: It's scary to have a fever this long, along with the itching, and all the other symptoms that are symptoms of certain cancers... I hope it's just mono... I am scared it's some sort of cancer, but my lymph nodes aren't swollen so that sort of gives me a little peace of mind. Please tell me someone else has been in this boat...

3

Hi Clayton, I'm so sorry to hear you’re not feeling well. My experience has been very similar to yours. I was diagnosed with mono in early July and had a low-grade fever between 99.5 to 100.5 every single day until last week finally last week my fever went below 99 for two days and my energy levels are starting to come up a little bit. I also do not have any of the other typical symptoms (sore throat, swollen glands, etc) similar to you. My WBC and RBC levels have been normal. It's just a slow recovery for some people with mono it seems, particularly adults (I'm 34). Were you diagnosed with a heterophile antibody test or an antigen specific antibody test? This message board has been so helpful in giving me a place to hear others' stories and realize my experience is not unique, which has been so important during such a long and drawn out illness. It will get better eventually! Just keep resting and taking care of yourself. -Arielle

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ive not experienced the fever or swollen lymph nodes or itching ... but boy have i been fatigued and wired at the same time. i was coping well with it for 5 months still working out although i was tired . once diagnosed stopped working out and became much much worse. i had some traumas in my life 3 relatives died within weeks so that set me back . im now at the 6 month mark and worse than ever but remember i didnt rest for 5 months so you are way ahead of me . try not to worry the symptoms of this come and go and there are many ... right now my teeth are supersentative ... go figure . hang in there and keep doing what youre doing ... youll be better soon. this is a complete NIGHTMARE !!!!

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aw im so sorry youre going through this

well if this is mono hen i had all those symptoms and they lasted that long too. the only thing i had that sounds like you dont is the throat pain.

most importantly though. how did the dr conclude you have mono? what blood tests did they do? did they test your liver and saw that it wasnt functioning that well? thats the first thing they saw wrong with my blood tests. then they tested for mono and it came back positive. with mono its possible to test to see whether you have an active or past infection.

so did you do those tests?

really they should be monitoring you via blood tests, especially to look at your liver. so they tested me every week or so until my liver started to improve. then they only did another test a few weeks or a month later. at my livers worst, i was going a bit jaundince (you could see yellow in the whites of my eyes) and i was itching too which (i may be wrong) but i think i read at the time it was a symptom of being jaundinced / liver probs.

my fever lasted for a month or so too. the illness takes a long time. its really slow.

its v good youre resting and being healthy. eat raw garlic , it helps with infections . something called olive leaf complex too

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and just to add, if you didnt have a teat result showing you have an active mono virus then id say go back and rule out whatever else may be wrong. but likely if you tested positive for active mono infection then likely this is what you have. dont worry, i dont think all cases last for really long periods of time. you sound like your body is doing good to at least not have much worse symotoms. hopefully it will just remain as your current symptoms and improve very soon xxx

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i did have the mono test come back positive. im sure its mono, its just pretty worrysome. thanks for the info!

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thank you. hope you feel better soon as well.

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thank you! i was diagnosed with the heterophile test. does it matter which was used?

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Yes, the heterophile test is not as accurate as the antibody test (I am an immunologist who specializes in these types of lab tests). I would go back to your doctor or maybe get a second opinion from an infectious disease doctor and have them confirm your diagnosis with an antigen specific antibody test. It will give you more/specific information about your mono. This doesn't mean your doctor was doing anything wrong, the heterophile test is used often as it doesn't take as long for results as the antigen specific tests. However it can have a lot of false positives or negatives when there are co-infections with other things. This is how I knew that I had EBV and also that it was my first time being infected (which is very unusual for someone in their 30s). Good luck! Please let us know how it goes.

https://www.cdc.gov/epstein-barr/laboratory-testing.html

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I had a monospot test done, and two blood tests one month apart, both confirming EBV. It's just scary that the possibility of a false positive is there, and having it for so long, makes me worry that it's something more serious. Thank you though, this has given me a bit of peace of mind. Hope you feel better soon, best.

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Hi Clayton,

Just reading your message and so sorry to hear you've been going through mono. I absolutely empathise having went through this awful virus myself 12 years ago, and I had virtually all the same kind of symptoms you do.

I remember after 3 months feeling the same as you - without any improvement, still with the awful low grade fever everyday which was so hard to cope with, the fatigue, the just generally not feeling well and different aches and pains in the glandular areas. My doctor said to me at the start 'oh it will be okay in 6 weeks' and I thought well that's not nice but I can cope with that, but I worried when it didn't get better in that time and like you started to worry could it be something else and went through the whole horrible googling stage and reading the stories of people with more serious illnesses and things - it's a horrible thing to go through Clayton I do empathise.

From the benefit of having been through it myself, I absolutely want you to know that what you're going this is most definitely normal for mono and that you WILL GET BETTER. You did the right thing getting blood tests and things, and although it's frustrating in a way when they come back normal when feeling unwell (not that you want anything wrong just want an explanation), please do take that as reassuring - this is classic mono, all my blood tests showed normal after the initial diagnosis even though I was feeling so unwell for so long.

It really is just a time factor Clayton, for me it took a number of months before I seen a turning point, but it did come and it does come, even though it doesn't feel like it at the time. And what you're going through now, this first few months, it BY FAR the worst and most intense phase. Just coping with each day and getting plenty of rest and doing all the right things as I'm sure you are is all you can do, keep your spirits up and remember IN NO WAY is this likely to be anything other than the mono - the symptoms you describe were EXACTLY as I was after three months, and although it took a bit more time for me, I did get fully better thanks to God.

I think the itching too can be very normal with mono, it must be so frustrating and awful to manage I know - but please be assured that all the symptoms will go away with time, and that many doctors I have come to learn don't appreciate the full length of time this thing can take to get better - it's such a nasty virus and knocks your body for six and the post viral stage just takes time to get through, but it doesn't mean to say you won't get better because absolutely you will - your body has amazing powers of recovery and its resilience and strength does come back after this and you will get back to full health again.

Taking vitamins and herbs helped me during recovery - a good strong multi-vitamin per day (Immunace here in the UK was the one I like), a B complex vitamin (great for energy levels and soothing nervous system), higher doses of Vitamin C (1000mg-3000mg per day) and immune boosting herbs like siberian ginseng, echinacea and oregano. Also taking some extra Vitamin D in the winter especially can be a great help.

The forum here is a really good one and there are some great guys with words of encouragement and hope - definitely better to come on here for support rather than searching google (although it's so hard not to do I know) - remember it's only the scare stories that get posted on there, not the vast majority of people who do recover fully from this thing with time!

Thinking about you Clayton and hang in there - absolutely YOU WILL get through this, even if it takes a little time still, you will get there - definitely - take it from me as someone who went through the same and thought things may never get better at one stage! (but thanks to God they did and will for you too!)

Craig

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Thank you so much for the kind words, your message has truly provided me some real relief. Thank you!

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ah ok. well it really sounds like mono. especially if they have teated twice now. you can call your dr and ask if theres a possibility of a false positive, or ask if they can test again right now to rule out false positive and to also keep an eye on your liver levels. say youre concerned about that.

it will be ok though xx

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Hi Clayton, I also had the low grade fever for a long time. I would say at least 8 or 9 months I was feeling that way. Now I am 14 months in and I do have the occasional day when it returns. I wish you a speedy recovery.

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I've had the downgrade fever for about 7.5 months now. I felt like I started to get better around the 5 month mark, but continued for a month with awful headaches. Have recently had a set back about a month ago, which is just starting to wear off...albeit in still very tired, head hurts a little And yeah just feel weak, low grade fever type. So yes it is normal, I'm no expert on it but I think it's just your immune system fighting the virus, which makes you feel bad. Bit like a common cold when you feel dreadful then. Time and a positive mind seem to be the best medicine. I've given up on the doctors now as I felt like they just kept telling to come back even 2 weeks to monitor my progress.....I think deep down they know you might be unwell for a set period of time. one of my doctors let it slip telling me I won't be able to play sport for several months...but asked me to see how I was feeling in two weeks....which looking back makes no sense.

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i hope you are right Dodge about feeling worse before you get better . i too had a setback at month 5 family trauma and its made me so ill the last 3 weeks. i wasnt great before but at least i could do a walk at the beach some days.... now my legs wont even go . and yes im a runner and when i asked dr about when ill be able to work out after im better ... i said 2019 ? he kind of gave me a look ... and said probably not . i too have been to many drs immunologist infectious disease specialist and basically there is nothing they can do . only useful for blood tests.

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Oh you're welcome Clayton I just know how badly this virus affected me and went through lots of the same emotions, worries and fears you describe. So really do want you to know that this thing doesn't last forever and it is often normal (unfortunately) for it to go on for a number of months but that it is equally normal to go on and make a full recovery after this - and you absolutely will I truly believe that!!

Thinking about you and let us know how things are going any time and there's lots of great folks on the forum with wise and encouraging words of hope having been there and been through it and got better thanks to God's help!

Craig

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Hi Lori / Dodge / Kay,

Still thinking about you guys and sharing in everyone's comments that the low grade fever is absolutely the worst thing to go through constantly with this virus. I didn't have a word or description for it at the time, just felt like this tap rushing through my body but now I understand it to be the low grade fever!

For me this was perhaps the symptom, along with the fatigue which of course is very much interrelated, which was the most horrible to deal with and the thing which was there throughout that I just couldn't seem to get rid of. My experience of it getting better was certainly more of a gradual one, it's almost like someone starts to turn down the thermostat on this low grade fever and although you might still feel it, it's less intense and with me it kept going that way over a period of time until finally it was no longer an issue and you could just get on with life normally again and didn't feel it every day and it was so liberating.

That day will come for each of you, whatever stage you are at right now, I do believe that and hang in there!

Craig

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Hi Tina,

Just wondering how you are doing? I'm hoping things are a bit more settled for you. Still believing you're going to get to full recovery and have great and healthy times ahead!

Definitely agreeing with you regarding Clayton's post - absolutely Clayton please know this is normal what you are going through and my experience was that the first 3-4 months were so intense and it frightened me too, but it does pass and it doesn't mean there is anything more serious going on - the virus is so intense that it tricks you into thinking that often, but in most cases this is just the way it goes, but you've been wise to check in with the doc and get blood tests and things, keep doing that when feeling unsure and hoping they can offer some good help and reassurance.

Although I don't know much about blood tests and things, I would say probably false positives are something in a minority of cases, and the fact you've got the symptoms of mono shows this most likely what is the cause and nothing else. Yes as Tina says always wise to keep monitoring liver function blood tests as mine was a bit off during the virus at one point and this can be normal I think, but it returned to normal as things started to get better.

Craig