Swollen Lymph Nodes / Mono

Ears, nose and throat
1

My story...

I was at work one afternoon a month ago & noticed a lump on my neck - I went to the doctors the following day and had an ultrasound & a full blood count. The ultrasound showed a few swollen lymph nodes in my neck. That night I went to the gym and another lump popped up. 

I went to see an ENT for a follow up and he said it was the start of a throat infection and gave me antibiotics. The antibiotics did nothing and over the course of that week my symptoms got worse. One tonsil was very swollen, the other coated in white. I was having night sweats, had an on/off mild fever & I was having upper left abdominal pain & generally felt awful. My throat was never sore. I also had some heart palpitations, dizzy spells and my chest generally felt uncomfortable. I also was experiencing chronic fatigue. 

I went back to the ENT and requested a EBV Test. This came back positive and I was sent to see an infectious diseases doctor. He went through my symptoms, felt my spleen and said it was enlarged. He agreed on the Mono diagnosis. I had a chest X-ray which came back clear and 3 days later a ultrasound on my abdomon which by that point the spleen pain had gone and all results came back normal. 

I had a liver function test which was very high and my bloods were retested and monocytes and lymphocytes were both very high.  My whole body ached. 

After nearly 2 weeks of very healthy eating and at home relaxing, my symptoms gradually decreased. 

During this period I was very worried about lymphoma and Lukeimia - I went to see a number of doctors who all agreed on the mono diagnosis. 

My bloods were re tested and the liver function returned to normal after about 3 weeks and my lymphocytes are still slightly high at 51%. I have been given iron tablets for 6 months as my iron levels were slightly Low. My blood was looked at and the hemotoglisgt said there are reactive lymphocyte cells. Apart from that the blood looks normal. 

I am still incredibly anxious as 4 weeks on my lymph nodes are still enlarged. After a further ultrasound there are a number of lumps in my neck & a couple under my arms & small ones in my groin. 

My chest is also still feeling uncomfortable & the fatigue is lingering, but not as bad as it was two weeks ago. 

I went to see a surgeon who said he would remove & test one of the lymph nodes to rule any bad things out, but I am extreamly nervous as this will involve general anesthetic. 

Does anyone relate to my symptoms? Do you think I should have the biopsy in 2 weeks time or leave it for now? 

I was thinking maybe to have bloods done again in 2 weeks and have an ultrasound on the nodes & then decide from there. 

Any tips or advise would be great! 

2

Hi Kirsty,its all part and parcel of the nasty virus im afraid,it takes a long long time to recover from,im 14 months in with it and a lot of people on here have had it for a while,it affects the glands all over your body too,hence the ones in your groin and armpit,personally if it was me I wouldn't have the biopsy as like your doctor said its the mono,it really causes some awful symptoms and makes you very unwell for a long time,especially the fatigue,that can last a while,try and get as much rest as you can and good vitamins,but I wouldn't worry about it being anything else other than mono,the virus actually causes anxiety too,hope you start to feel better soon.....

3

Hey Kirsty!

I'm really sorry this is happening to you. Glandular fever can be really tough and stressful and you will get through it.

To put your mind at ease I'll tell you my story as it seems similar to yours in some aspects.

I was diagnosed with glandular in January at which time I was very ill incredibly nauseated, had hepatitis, an enlarged spleen, fatigue and cognitive issues. Also enlarged lymph nodes on my neck along with whole body rashes (weird right?). I got it real bad.

Before my diagnosis I too was convinced I had some sort of cancer and was freaking out. I had ultrasounds and every blood test known to man etc. Anyway it took me agessss but finally I started to feel better. Maybe 2 months later. Even then I wasn't fully recovered. University was tough.

Then 1 month ago I got real ill again. The lymph node was up in my neck still after 6 months, I felt like I was dying and I thought, no I really do have cancer. Anyway I had every test in the book all the way to a full body CT and nothing came up. The doctor put it down to post viral syndrome which is a reccurance of symptoms from a virus not explainable with any medical tests.

Long story short I'm on the mend again but feel like I did back in January which sucks. I still have the lymph node in my neck though! And the doctors know it isn't anything sinister! 

I thought because all the websites said my lymph nodes must be down that it had to be cancer but here it is still up, 9 months later. I just want you to know websites and text books just can't explain the wide variety of symptoms and presentations of glandular fever and just how sick it makes you and I can assure you that you don't have any sinister pathology! 

Only advice I haven is rest as much a second possible! My post viral syndrome came 8 months after diagnosis when I started pushing myself. Listen to your body and you will very slowly feel better!

A little piece of info as well, women and girls with glandular are far more likely to present with fatigue and tiredness than boys and men, sometimes 24 months later so fatigue is very common.

One last thing, it seems like you are requesting a lot of tests. On the note of the biopsy ultrasound is interpreted by radiologists who are some of the most qualified medical professionals in the world. They make the call on whether or not you need a biopsy based on ultrasound results. If they didn't request you needed one following ultrasound of lymph nodes, don't get one. General anaesthetic comes with its own risks and costs. Worth waiting. If in a few months your lymph nodes remain and you're still nervous consult your doctor.

I really, really hope you start to feel better soon, I completely understand where you are right now as I'm a real worrier and I am a big fan of doctor google. Good work on making it this far!

Regards, Ryan

4

Hi Kirsty,

This is very normal with the virus, I had enlarged glands for months, I did not begin to fully recover for a full year, I am also in my fifties so it takes longer. Just rest as much as possible and eventually your body gets a handle on this virus.

5

Thank you for your message, it makes me feel stronger knowing I am not the only one with ongoing symptoms. My friends & family all think I am going crazy & I really am driving myself mad with all of these awful thoughts. I’m glad to hear you are on the road to recovery! 

6

Thank you for your message Diane. I am trying to keep positive & think I will stock up on the vitamins and monitor for a while before taking up the biopsy. I just wish I could wake up and for things to be normal again! Do you recommend any vitamins, I am currently taking daily 1000mg vitamin c, iron & evening primrose...any recommendations which helped you would be great 

7

Thank you so much for your message Ryan. You have really put my mind at ease. I think I will take your advise as well as the doctors and hold off for now and hope for the best. I was recommended broccoli, leafy greens, honey, lemon, ginger and pomegranate to help the lymph nodes, so I have stocked up on those. Have any vitamins helped you? If so what would you recommend? I am currently taking 1000mg vitamin c, iron and evening primrose. I hope you are feeling better again soon. Hopefully we will see the light at the end of the tunnel pretty ASAP!!!

8

Hi mono, lovely to see your still around on here....how you doing these days??

caroline xx

9

Hi Caroline,

Doing pretty well. my daughter is still struggling, but i am about 90 percent recovered. My daughter bought a home and I am helping with the lighter chores so that is progress,

How are you doing?

10

Hi mono,

Its great to be in contact with you again, I'd say I'm about 99% recovered, I do normal stuff now and days out etc, just sometimes still I get fatigued, so it hasn't completely gone but I still feel so much more normal that I did in year one, thank god. I ended up losing my job, so now I've enrolled at college and start next week.

That's great you are able to help your daughter, I'm glad you're doing ok. Sounds youre like me and nearly there too. It seems like an awful long time since we got this virus. Sending your daughter lots of well wishes too.

caroline xx

11

Hi Caroline,

I am glad you are recovered too. I was really beginning to wonder if I would ever get better, I still check in here to help and encourage those people who like us wonder if they will ever recover.

Here's to better day for all of us. I am forever grateful to Craig and everyone on this forum who helped and encouraged me when I was at my lowest point

 

12

Hi mono, you wonder if you're ever going to get better as it Just goes on for so long and you never know when that end date is going to come. That's the worst part. Not knowing.

i mean, when you get normal ill, 2 weeks seems like forever, then you just recover and back to normal.... This virus just doesn't work like that. It's so hard going. I wish specialists and doctors could reassure us more. It's normal to have it this long and no you won't be left like this forever. As that's what's all crossed our minds at some point.

keep calm and carry on!!!

xx

 

13

Oh I know that feeling 40with,im 59 and fell ill last June so around 14 months now,i already had ME/CFS before gf,had that about 15 years,but ive never been this ill in my life before as I have with this,its nasty,i actually have felt at times like I was on my way out,im on with my 4th relapse with it since then,and each relapse knocks me off my feet and puts me in bed for at least 6 weeks,then begins the slow process of trying to get back on my feet and building myself up again,but never feeling right,that lasts for a few weeks and then bang I come down with it all over again and I feel as ill as I did in the beginning each time,its so frustrating and I really don't feel as though my body can go through another bout of this,i cant work because of the ME/CFS so luckily I have time to rest whenever I want and im on my own as hubby died so don't have any help,its been a nightmare,the worst year of my life,just wondering how long these relapses are going to go on for and will I ever feel like I did the day before I was struck with it,glad to see you are feeling much better so that gives me hope,but wondering if anyone else had really bad relapses with it as frequent and as severe as im having them and if its normal ?

14

Hi kirsty,

This virus causes some gnarly anxiety but it’s just that and not a more serious problem. Like others have said before, many have symptoms like swollen nodes, fatigue, sore throat, etc.  for months at a time (not exactly fun to go through but at least know you now you aren’t alone). I have had some symptoms you mentioned like heart palpitations and dizziness but I promise you it all gets better with time and rest, and try not to stress because it definitely makes recovery harder. Hang in there and take care!

15

Hey Kirsty,

So sorry to hear you've been going through mono and have had such a terrible month of symptoms and worry with it (which is only understandable). I just want to reassure you that all of the symptoms you describe sound like classic mono, many of which I had too when I went through it a number of years ago. 

As the guys have been saying vitamins and herbs can really help, it sounds like you have been doing all the right things - perhaps as well as the ones you are taking, making sure you are taking a good strong multi-vitamin per day (I take Immunace Extra which is on sale here in the UK), a B100 complex and/or Co-enzyme Q10 per day (great for energy levels and nervous system) and immune boosting herbs like oregano, siberian ginseng and echinichea are great too. Also for a week or two taking 1/2 tea spoon full of baking soda in plain water and drinking twice a day they say is very good for helping fight viruses, I've found it helpful too. 

Really hoping and praying this bother with your lymph nodes settles down, it definitely can be very normal during mono and I had one in particular in my neck which persisted for a while, but it did go away eventually - it was one of the last symptoms to go I think but want to reassure you that these things do go away. I hope that you don't have to go through any procedures or anything, of course do take the doctor's advice if they think it is something that needs done or not - just hoping and praying that the doctor can offer the right help and advice and it can reassure you. It frightened me too when you read how EBV can be linked to other things, it's scary to read but please be assured that the overwhelming vast vast vast majority of people with mono make a full recovery with time and don't have any other issues - one thing I tried to think on to counter those worries was that they say somewhere in the region of 75 to 90% of the western world gets infected with EBV at some point in their lives, often as a baby or child when the effects are not so bad as an adult, but this high percentage of people are generally fit and healthy and don't get any other health issues as a result of contracting this virus at some point.

Thinking of you Kirsty and remember you ARE going to get better - if it still takes a little time don't panic, but can be normal with this, but you most definitely WILL get there and this thing does go away with time. Hang in there and do let us know how things are going, the guys on the forum here are really great and supportive. 

Great to read some great words of encouragement and advice from  Ryan, Caroline, Dominika, Mono too, and Diane - thinking about each one of you too. 

Craig

16

Only advice I have is to rest! Sounds obvious but often people start to feel better and because they feel better they start pushing themselves. The key thing is when you feel better to rest more! I won't lie i've missed out on a lot this year due to my glandular as I often had to rest or couldn't enjoy it fully because I felt sick but it's a small price to pay for feeling better.

I never took any vitamins or anything, just ate healthy. I have noticed since I got mono that I get colds way more easily. I must have had 7 or 8 this year where normally I get one. I recommend echinacea and vitamin B if anything. At my uni I have access to databases and high quality research shows it is proven to work in prevention of colds. If I had have known this I would have taken it as now i believe the viruses I got while fighting mono set back my recovery. And with vitamin B people swear by it for fatigue. As fatigue wasn't my biggest issue I never worried with it.

Good luck and keep us posted! 

17

Hey Ryan,

Definitely some really good advice, it's natural when you feel a bit better or having a good day or week to want to do more and push yourself, just need to take things at a steady and gradual pace even when feeling a bit stronger - remembering that in the fullness of time full body resilience comes back and recovery does happen. 

Hoping you are feeling much better now, yeah I totally agree about B complex - I take a B100 complex per day (don't panic if this makes your pee go bright yellow, it's normal!) and echinicea also great. I have found oregano to be a really good and powerful one too. 

Thinking about you and hoping and praying things are moving in the right direction for you - believing that God is the great healer. 

Craig

18

As an update...

I have been unable to sleep the past few nights and have been suffering from awful night sweats. 

I think my lymph nodes have come down slightly in my neck. I have another ultrasound on them today. My left tonsils are still inflammed and has a yellow spot on them also I think yellow/white patches appearing too. 

I am feeling exhausted and anxious. I am now 6 weeks in...

Is this normal? 

19

I am 7 months in and still get tired, so don’t worry this is completely normal. Night sweats and not being able to sleep sounds pretty typical to me as well. It sucks, but it will get better with time. Just get rest, rest and more rest! 

20

Hi Kirsty,

I do want to reassure you like Dominika that what you describe, this awful fatigue and swollen lymph nodes, absolutely is very normal for mono, not that it makes it any easier to deal with I know. This phase you're going through right now is by far the worst Kirsty, so remember just take a step back and get plenty of rest and just cope with getting through each day right now when feeling this way, removing stress and taking time out for as long as you need.

Thinking about you and remember this thing DOES get better - even if it takes a bit of time, absolutely you will get there. Everyone seems to recover to different timescales with this but please please do know that things do get better with time. Of course do go back to the doctors and let them know that's always wise and ask them to keep on top with blood tests etc, but definitely does sound like the mono is the cause of these symptoms. 

Hoping you are able to get a better sleep at night from now on and remember take extra naps during the day also if you can and just take things slowly for now - thinking about you and do keep in touch and let us know how things are going. As Dominika says rest is so important, frustrating I know when all you want to do is live a normal life, but that will come again hang in there! Message any time!

Craig