Suspected EBV - symptoms & story
Posted , 6 users are following.
Hi,
I’m 39 years old. Married with two young children, living in suburban London. 2 year old in nursery and a 5 year old is in reception class at Infants School. I suspect possible exposure to EBV / HHV-6a/b.
I presented with symptoms on 3rd March, but only got tested for CMV, EBV
and Lymes on 7th June. CMV and Lymes negative. EBV showed as a “past infection” with IgG >600 U/ml, VCA IgG of 86 U/ml, but no IgM. Are my blood test results potentially indicative of more recent infection?
I'm pretty sure my son presented similar symptoms 6 days after me, which tends to imply viral infection, but I too have had extreme health anxiety, and seen 2 Lymphoma specialists, and had an ultrasound. To my relief the radiologist did not deem the lymph nodes worth of biopsy, and the lymphoma specialists feel my symptoms are viral. But without definitive diagnosis anxiety persists.
Description of my symptoms for the period, which presented on 3rd March, felt as
though they were abating in early April, but have since “come and gone” in milder form since then:
SYMPTOMS -
Light/mild “low grade” fever (not a high temperature) for first 2-3 weeks. Abated after that. Presented quite suddenly.
Night chills & sweats. Initially waking at 1am every morning and not getting back to sleep initially for 10 days. An electric tingling feeling all over body. Then
just night sweats for the following 2 weeks. Lighter night sweats after that.
Abating from 10/11th April. Mild ‘on and off’ over the remaining months.
White / light ‘furry’ tongue, presented suddenly on day 2-3, but throat not too sore. A couple of GPs suspected pharyngitis (GPs ‘looks like pharyngitis’).
Swollen neck glands / lymph nodes for whole period. Which seem to go “up and down” – sometimes almost disappearing in the evening when I feel slightly better.
On 14th April, I noticed that I had pain under my arms, with some light
sweating under arms. Slight pressure in centre of chest.
Notable loss of appetite for c.1 week early on in period.
Extremely thirsty during early period (up to 3 weeks after onset). At night and during the day.
Weight loss (c.3/4-1 stone weight loss). From 15 stone down to 14 stone at nadir. c.6% loss of weight. Recovered approximately 30%-40% of lost weight as at 12th April. Current weight c.15 stone (fully recovered).
Some mild diarrhoea, slight upset stomach, mild gastro/flatulence. During the period. Random abdominal pains.
Severe nasal congestion towards the start of the period – c.10 days. Much worse in the early evening and at night. Prevented me from breathing while asleep almost. Coughing up mucus in mornings / bronchitis. Warm showers to
loosen congestion/large pieces of mucus falling out of nose.
Nasal congestion gradually got better during the period, and as at 12th April
is almost entirely better.
From 11th March for around 1.5 weeks, light torso/neck rash: comes on at
night, goes during the day (suspect maculopapular rash). Early on v. sensitive skin – impressions from sleeping left marks on skin for an unusually long time.
From c.20th March – knuckle rash which looked like eczma. Lasted 1 week with some flaky skin on hands. Atopic dermatitis. Entirely cleared up after 1 week.
Extreme pins and needles during the night – woke up around 1am and arm felt totally numb on several occasions. Likely neuropathy. Pins and needles has largely gone after 2-3 weeks after onset. Returned in relapse of early June.
Mild paresthesia (a random feeling of tingly skin in different locations /
‘skin-crawling’). Not “severe itching”. This has come and gone a few
times over the course of the virus.
Possible symptoms of SIBO on 7th/8th April – flatulence, bubbling
stomach, belching at night for a few days.
Slight/mild sweating under arms recently (13th April) in the morning. Thought I felt an underarm lymph node.
Heart palpitations, which come and go.
Sometimes feel very severe.
Spells of dizziness and slight feeling of nausea.
Culminating in a few dizzy panic attacks in early June which lasted for
around 30 minutes and felt very severe.
Characterised by: severe dizziness, feeling of nausea, turned very pale,
struggled for breath/abnormal belching spell, heart palpitations.
What felt like generalised lymphadenopathy before panic attacks – much more swelling in neck, pelvis, groin etc – some weird swelling on neck felt on 11/06/2019.
Joint pain in knuckles, some random muscle aches.
On and off throughout the period.
Light cough – a few scanty coughs in the morning and evening.
0 likes, 20 replies
craig07920 david06977
Posted
Hello David,
Goodness what an awful few months you have been through by the sounds of it, just wanted to message to let you know I can relate to a lot of what you say from my own experience of mono a number of years ago.
I can only imagine how frustrating and frightening it is when you can't get a firm diagnosis, it is only understandable it would cause real anxiety and distress. It sounds like you've done all the right things getting various tests and seeing various doctors, and definitely take it as reassuring that the results have in the main been good. That is CLASSIC mono, when all sorts of blood and other tests show up as fine, even though you are feeling so awful and unwell.
I want to reassure you also that it can be very normal after 3 or 4 months of mono to be still feeling so awful and unwell, but that the blood tests don't show positive for mono and only for past infection. I was lucky to get a blood test about a month after I started to feel unwell, and it showed positive for mono, but when I had another one a couple of months later, it showed as fine and most of my other blood tests after that showed fine, except for liver function test showing as a bit off at times which can happen and can be very normal during recovery from mono. I'm afraid I don't have any medical knowledge and not really able to interpret the specifics of the blood test results you noted, but I know some folks on the site here are good at that kind of thing and hopefully can post and offer some reassurance too.
Most definitely the symptoms you describe do sound consistent with mono or a mono type illness. I remember after 3 or 4 months feel dreadful still, with awful low grade fever and fatigue and painful lymph nodes in my neck and other parts of my body. It really felt like a living nightmare, and I want to reassure you that things will get better David - they really will. I too was like you so anxious about it all and reading the stories about lymphoma and different things - it is terrifying, but absolutely remember that the mono is a very very common virus and causes lymph node swelling and pain which can linger and take a while to settle - in no way does it mean anything more serious, you did the right thing getting things checked out with lymph nodes and hoping so much that can put your mind at rest. One thing to keep in mind is that they say anywhere from 75% or 90%+ of the western world get infected with EBV / mono virus at some point or other, many as a child when they don't maybe experience the full intensity of it, and the vast vast vast majority of these people make a full recovery and go on to be healthy and well afterwards.
This time around 3 or 4 months I remember feeling the worst - because the intensity was still so strong of the symptoms but I was so weary of having to deal with such draining symptoms day after day. But the intensity will lessen as time goes on David, for me it took 10 months to really start to feel like myself again, but BY FAR those first 3 or 4 months were the worst. And I'm not saying it will take you as long, everyone is different with their recovery from this, I just want you to know that it is normal to be feeling this way and not to panic if it takes a little while for recovery, but truly know that you absolutely WILL make a FULL recovery with time! Just so frustrating it can take a bit of time though, but truly you will get there David.
I remember thinking when going through it that I found it hard to see my body resilience return and me being able to cope with any kind of stressful or physical level of activity or normal lifestyle - but with time all this returns, it really knocked my confidence too but it all returns as you start to feel better. God is the great healer, I know it was only down to Him I was able to get through it and recover, and I truly believe He is going to get you through this too and back to full health with a little time!
Taking vitamins and herbs certainly helped me during recovery, including a good strong multi-vitamin per day (I take Immuace Extra, you can get it online or in Boots), higher doses of Vitamin C (1000mg-3000mg per day), a B100 complex vitamin and / or Co-enzyme Q10 per day (can be really great for nervous system and energy levels) and immune boosting herbs like siberian ginseng and echinacea. Of course it's really important to check for any interactions with other medication or health conditions before taking supplements, I'm no expert just going on what helped me and my own research. Checking in with a herbalist or natural doctor for advice and help is always a good idea and of course with the regular doc too.
But just wanted to let you know that I empathise and was thinking about you David when read your message - and to encourage and reassure you that although this is a horrible horrible virus, it does get better and you will get back to good health again - I know that doesn't help much when in the midst of feeling awful with it - but it does pass and you won't always feel this way - truly there is hope and recovery from this thing.
It's a great forum on here lots of kind and encouraging people who know what it's like to go through this awful virus - so message any time feeling down or just want to chat. Hang in there David, better times ahead - and remember get plenty of rest and drink lots of water, be kind to yourself and just take it easy at this time.
Craig
david06977
Posted
Thanks for the kind words of support Craig. This is a really useful forum, and helps to keep things in perspective. I've definitely been able to draw a great deal of comfort from reading about other people struggling with the virus, and learning that my symptoms are actually not that unusual.
If anyone else has had a similar experience to my symptoms above - please let me know
katelyn09436 david06977
Posted
hi david, i have had alot of similar symptoms like you ive gone through dizziness, shortness of breath, heart flutters, fast heart rate, i did have stomach issues in the beginning and woke up with bad night sweats, now i have white toungue as well but was told it was due to mucus which makes since i have had bad congestion as well towards the beginning that got better but now im going through a second round of joint and muscle pains...i have also felt numbness in my arm and leg as well as tingling and pins and needle feeling in my toes...before this virus i was healthy and had no issues i have been sick since january, to me your symptoms sound like EBV i just recently got tested again for it and it also shows past infection but alot of people said thats also the case for them and they still feel bad...i hope this helps!
david06977 katelyn09436
Posted
Hi Katelyn - thanks for your reply. It's a terrible virus, but it's a big comfort knowing that others with EBV are experiencing the same type of symptoms, and have made a recovery. Definitely helps with the anxiety.
Do you mind me asking if you had swollen lymph nodes? How long have you had symptoms?
I hope you feel better soon - take care. x
katelyn09436 david06977
Posted
oh david i know it is truly horrid...i actually have had the feeling of swollen glands under my chin and down the sides of my neck felt like it was swollen and sore but never looked swollen! very very strange have also had the feeling of a lump in my throat on and off but never had any issues swallowing food...i have not had a symptom free day since january 28th once one symptom gets better another thing starts its very scarey...i pray that you get better too david this thing just takes time and unfortunately it takes alot of time for most people...thank you and i hope you get to feeling better soon too!
david06977 katelyn09436
Posted
"... feeling of swollen glands under my chin and down the sides of my neck felt like it was swollen and sore but never looked swollen.." "...also had the feeling of a lump in my throat on and off but never had any issues swallowing food.." .....I have those exact same symptoms. It's bizarre.
Hope you feel better soon. It feels a bit as though my recent spells of dizziness and pins and needles are abating hopefully.
katelyn09436 david06977
Posted
very bizarre! and thank you so much i hope those symptoms are getting better for you too i remember the dizziness being so terrible for me it lasted for 4 months
david06977 katelyn09436
Posted
Hi Katelyn, could i ask you if you have tested positive for IgM antibodies? Also when I have dizzy spells during the day I've had this weird feeling of swelling on the sides of my neck and above my collarbones - it feels very puffy and flaccid (not like a lymph node) it feels too large to be lymph nodes, but it does feel swollen - have you experienced this? It's really freaking me out.
katelyn09436 david06977
Posted
i actually have an appointment monday to go over more bloodwork i had to switch doctors because my other one wasnt giving much information at all...ive had that feeling on the sides of my neck but not my collarbones however i did feel a tightness around my collarbone area and in my chest
Baconman david06977
Posted
hello mate,
It is very much exactly like what happened to me - the timeline is a little different for me, but the symptoms are the same, especially the "sleeping marks on skin staying there for an unusually long time" and some weird rashes are what struck me, I've not been seeing these things mentioned too much around here but this is what baffled me too.
I started feeling sharp pains in my lymph nodes around the end of February this year - ever since symptoms come and go, I also had a week where I was having night sweats, no sleep, heart palpitations, I thought I was gonna die man. That lasted only about a week luckily.
What has been bothering me very much throughout are the swollen lymph nodes in my neck, down my throat is how I would describe them, and more swollen one one side.
I also had an ultrasound on them - radiologist said the largest one is 12mm, which is borderline normal and can be very normal with mono, so he didn't suggest a biopsy, though when I went to the ENT with the results she said even though it's probably post-viral mono ( i only ever tested for recent infection) it can't hurt to have a fine needle aspiration on it just to rule out anything else. So I'm waiting on that for next week, anxious as s**t.
These nodes have been up for 4 months now and it's bothering me a lot.
david06977 Baconman
Posted
Hi Baconman. thanks for the message and good luck with the FNA. let me now how it goes - I'm sure it will be fine.
What gives me confidence is that my 2 1/2 year old came down with exactly the same symptoms as me but 6 days after I presented. The little guy had the same night sweats (he was crying for about 5 bottles of milk a night for 3-4 weeks) he also had those skin impressions and nasal congestion. It was strangely similar. I think if my 2 year old had it, the it cant be something more sinister, it must be viral. (hopefully)
david06977
Posted
HI Baconman. I'll be thinking of you mate. Please let me know how it goes with that FNA. If we have identical symptoms its likely to be the same for both of us...
david06977
Posted
Hi there
Just a quick update - I'm sure we'll be fine Baconman. As we discussed, you tested IgM positive which implies 'current infection', and you have very similar symptoms to me. I think we can draw a lot of re-assurance from this. Mono can drag on but I am sure we will get better.
Baconman david06977
Posted
did you only test positive for VCA IgG & EBNA IgG or both?
a lot of people with chronic symptoms dont test positive for igm just both IgGs.
david06977
Posted
hi there baconman - i tested positive for both IgGs - past infection. I've read that IgM drops off after 4-6 weeks. I got tested 3 months after presenting symptoms, so I'm hoping this is just prolonged current infection...
Sam5706 david06977
Posted
David, I am in the same boat. tested positive for VCA IgG but negative for igM. Here in Australia they only seem to test for VCA IgG and igM. or maybe my doctor just didn't know what she was doing. anyway, I tested positive for igg. she tested me about 9 or 10 weeks after my symptoms started. most of them had gone by the time I got tested, I just have swollen lymph nodes (throat, armpit, groin), so like you I'm hoping I just missed the positive igm.
my doctor hasn't been much help and can't really tell me for sure what's been happening in my body but like baconman, we have both had the same tests etc, chest xrays, ultrasounds on lymph nodes. they didn't do a FNA on me, they said my lymph nodes are normal nodes that swell to fight infection
it's a very scary thing to go through. like you, I have a 2yo and a 3yo. My 2yo has had an on and off rash for a couple of months now. I've taken her to a&e to get checked and all they said was it was viral. I also took her to the doctor to get her completely checked and she had a swollen lymph node in her neck as well. my 3yo also had a swollen lymph node in the neck. no one is concerned at all about this but I am terrified of what is wrong.
I begged her to check my antibodies for EBV again to see if the level had changed. it was 33.2 for vca igg last time. it's been about 2 weeks since then and I will get my results today so I'm really HOPING they have increased. I have also tested positive for CMV, but also for past infection. it was 426.40 for igg. But this doesn't typically cause problems in healthy adults and I don't have any other health issues (apart from asthma), so I'm really stuck.
Sam5706
Posted
sorry I still also have fatigue, some days it's severe. i feel shaky and get random headaches. I also feel like my heart is beating fast at times.
david06977 Sam5706
Posted
Hi Sam. Sounds like you've had a very similar experience to me - i had my ultrasound done a week or so ago. I think the kids pick these viruses up and spread them to us. Baconman had the same symptoms and tested positive for IgM (which is a definitive diagnosis) which gives us some comfort if our symptoms are the same then its EbV. Also if you're kids have something them its almost certainly viral. But I'm like you - i still get anxious -especially when symptoms start coming on during the day! what other symptoms have you had - did you get night sweats etc in the first few weeks?
Sam5706 david06977
Posted
me and baconman have chatted heaps. he tested positive for igg and ebna igg but it was negative for igm. he showed me his test results And they were very similar to mine.
I just got back from the doctor, I got her to do a second ebv test and my igg has doubled in 2 weeks so I definitely do have EBV. hopefully that helps make you feel better! I have a very long list of symptoms. I will message you. I wrote them down so I'll send you the photos of that.
Baconman david06977
Posted
Lol yes I mixed up the two I did say i tested positive for IgM but i meant the other IgG...
Lol sorry man. Still very likely it's just mono