"Mono" with neurological symptoms = Not EBV, but what then?
Posted , 8 users are following.
I wrote a few posts on this forum last spring, after having many months of debilitating flu like symptoms and nervous system related symptoms. After a while of obsessively looking for recovery stories on the forum, and feeling discouraged when I didn't find many, I promised myself I wouldn't return to the forum until I was well and could provide you all with an uplifting recovery story of my own. Well, since I am still not well and have come to realise a few things about this virus, I have to break that promise in order to discuss my thoughts on this virus/illness/condition with you. Not sure what I am looking to achieve, but hopefully get some further understanding on the mechanisms of this mystery virus, or whatever it is that is causing these strange symptoms.
My story
Summer 2016: Brain fog, memory problems and a buzzing/electrical feeling in my whole body started. Occasional nausea and irregular heartbeats. Chalked it up to not enough sleep.
Oct 2016 - April 2017: New job and new relationship.
Started getting sick a lot with flus, colds, stomach problems, fungal infections and recurring cold sores (had them all my life but they increased in frequency).
March 2017: Stressed out from my new competitive job and from having to call in sick all the time. Developed shingles (not common at the age of 26) along with headache and flu like symptoms.
April 2017: After the shingles had healed I started feeling dizzy, nauseous, nervous, had joint and muscle pain and was extremely fatigued. Quit my job as I felt my body was breaking down and I couldn't keep up with work.
May 2017 - Aug 2017: Started a new low-stress job. Had occasional joint pain, pain between my shoulder blades and random burning on my skin during the summer. General health check only showed slightly elevated liver enzymes.
Sep 2017: Moved in with boyfriend and started exercising several days a week. Soon got neck pain and a pressure like headache that stayed with me 24/7 for seven weeks straight and wasn't relieved by pain killers.
Oct 2017: Caught a nasty flu-like virus with cold symptoms that stayed with me for 4 weeks.
Nov 2017 - Apr 2018: The October flu never really went away, or rather, it morphed into the following symptoms:
- Muscle twitches and a restless/buzzing feeling in the whole body
- Muscle weakness
- All over joint pain and burning muscle pain
- Sharp nerve pains in forearms, hands and head
- Tingling, pain and numbness in whole left facial nerve + jaw tremors
- Intense pain and soreness in thoracic spine
- Burning sensations on skin (felt like shingles but without the rash)
- Blurry vision, light flashes, eye floaters, sensitvity to light
- Sound sensitivity and high pitched tinnitus
- Nausea and loss of appetite
- Periodically severe anxiety and feelings of depersonalization
- Brain fog and dizziness
- Racing heart for no reason, irregular heartbeats
- Breathing problems, felt like the breathing reflex sometimes just stopped working
- Insomnia despite exhausted, night sweats
- Low grade fevers and sore throat almost daily
- "Chemical smelling breath" according to boyfriend
- White tongue (brushing and scraping made no difference).
- Petechiae in throat and on neck, chest, arms and dermatographia
- Hair loss and beau's lines on my nails
All symptoms worsened dramatically after any kind of physical exertion.
I saw several different doctors and specialists and had ALL the tests done (Lyme disease, MRI of brain, spinal tap, ophthalmologist, blood panel, liver enzymes, STDs, allergies etc etc... ) Everything looked absolutely normal. In april 2018 I demanded a monospot test despite already having had mononucleosis in my teens. The test turned out to be positive and I was SO relived to finally have an answer to my symptoms and knowing I would eventually get well. But the months came and went and I still had severe relapses after any kind of physical exertion. At best I felt 85% better for up to 5 days before crashing again. I saw an infectious disease doctor and told him about my never ending symptoms and the positive monospot. He said it was highly unlikely that I had had active EBV for over a year and that what was causing these kinds of symptoms. He said that the monospot test is very unreliable and often shows false positive due to other reasons such as inflammation/other viruses etc. He thought it sounded more like ME/CFS, and said that one CFS-theory is that an infection throws the immune system off balance and causes it to attack the bodys own nervous system. When they didn't find any measurable amount of EBV in my blood nor spinal fluid I went with the CFS/ME theory. I started taking really good care of myself in hopes of being one of those who actually recover from it within the first few years, before it becomes chronic. The severity of my symptoms have definitely lessened since April. My hair has stopped falling out (phew!), my body aches have lessened, brain fog is lighter etc... But I still have some level symtoms each day and I can definitely not do any kind of straining activity without relapsing big time. So yeah, it does seems to be along the lines of CFS/ME.
But here comes the mysterious part... My boyfriend has been experiencing a few similar symptoms to what I have had the last year: Night sweats, sharp shooting pains in his jaw and ear, muscle twitches, pain in hands and forearms and dizziness. They seem to have been mild, he has only mentioned them occasionally and he hasn't felt sick or flu like with them, so I have hoped that they were only coincidences and convinced myself that I was being paranoid about them sounding similar to mine. (Note: he hasn't been aware that I have had these specific symptoms as I have had so many different ones that I have feared sounding like a crazy person if I told him about them all..) Anyways, now one of my closest friends has told me about these exact same "mystery symptoms" that she has been experiencing on and off for the last two years! (again, she doesn't know that I have had these specific symptoms either. I have just told everybody that I have had mono for a ridiculously long time as this is what I have believed). And now that I start thinking about it, I can think of a couple of more people in my social surrounding that have fallen sick with some unknown virus this last year and been sick for an unreasonably long time. These people are all over the age of 27 which makes it highly unlikely that it is EBV going around since 95% of adults already have had the virus and reactivation is very uncommon. And the symptoms don't really match up with those of mononucleosis, as much I would like to tell myself that they do.
When I read on CFS/ME forums (warning: don't do it!) they do have the exact same symptoms as I do... But so do war veterans affected by "Gulf War illness"... And so do people who believe that they have "chronic lyme disease"... And so do people who believe that they have "chronic EBV"....
Could all of the above really be caused by the same thing? What they all have in common are the symptoms and that no one has yet to found an explanation for them. They all seem to be somewhat contagious, since they all seems to cause occasional cluster outbreaks. This makes me wonder if there is some sort of undetectable virus that some people are more vulnerable to, and others are immune to, since not everybody are affected?
What are your thoughts?
And to those of you who have the same kind of symptoms as I listed, does anyone else in your social environment also seem to be affected?
All I know is I don't believe that my symptoms and the symptoms affecting some of my friends are due to EBV. But what then...?
0 likes, 29 replies
vancityraincity isabelle54481
Posted
Your timeline, symptoms, everything is so similar to mine! I was also ultimately diagnosed with CFS but to me.. what is CFS? We are obviously going through some undetected virus because this feels like mono. So maybe it’s not EBV, but it is some weird mutation! I swear !
Especially since after I have started improving, my family member got ill for same duration with similar symptoms, AND THEN ANOTHER FAMILY MEMBER who is not biologically related to me also felt ill with it! CFS my arse, this is some weird virus that is like mono but doctors nowadays are too lazy to look into it more. I wonder how many people out there are suffering with zero diagnosis just a “oh well must be CFS”.
CFS is such a non diagnosis it makes me mad! There’s no tests to prove it’s that!
brent_83487 vancityraincity
Posted
isabelle54481 vancityraincity
Posted
Thank you for your reply Van! CFS/ME is definitely a wastebasket diagnosis. It is simply a name for a set of symptoms that no one has found the cause for. Personally, I believe it is a virus. And unlike EBV, it seems to be airborne, since it has affected people in my surrounding that I haven't been in that close contact with. We have simply shared a common space.
If you search "CFS infectious disease" you will find an article presenting evidence that supports that ME/CFS is an infectious disease, that the virus/bacteria persists in patients, that it can be transmitted by casual contact and that individual factors determine susceptibility to it, meaning there is a population of healthy carriers who may be able to shed the pathogen.
Did you and your two affected family members share a common space at some point? (Lived together/vacationed together?)
Are they recovered now?
Also, if you have seen them during yours or their illness, have they or you relapsed shortly after? (Am wondering because I am worried that me and boyfriend or friends might be reinfecting each other and therefore never fully recovering).
vancityraincity isabelle54481
Posted
craig07920 isabelle54481
Posted
Hi Isabelle,
I was very pleased to see your name pop up in a message on the forum as I remember having some very warm and friendly chats with you. Just so sorry that things have still been so tough, when you lay your story bare from start to present it really hits home what a terrible time you've had over such a long period. I just really hope and pray things improve and you can feel much better soon.
I know you must be so emotionally and mentally drained by all these different phases which each bring their own worries and take their toll. Having been a bit of a hole myself with back pain and other troubles since about June 2017 and struggling to see my way through I certainly do empathise with the mental and physical struggles. This week I've hit quite a low point again and it's so painful when that happens and I know you know how it feels Isabelle.
I am very much hoping that because it wasn't until the spring of this year that your mono was diagnosed that it is a sign that you are still in recovery from that, remember it can be very normal to take 6 months or more to start to see a turning point with this thing - it took me about 10 months from diagnosis to start to see a major change. Very much hoping that change is on its way for you Isabelle, and I do believe even if it's not right now that day will come when you are able to come back on the forum and share your own recovery story. I do understand it's not easy coming onto the forums when feeling fragile, because you desperately want to seek encouraging words and advice but sometimes just a wrong word here or there from someone can cause so much worry and distress beyond belief.
Thinking about you still Isabelle and hang in there, just praying for better times ahead.
Craig
isabelle54481 craig07920
Posted
Hi Craig,
Thank you so much for your kind words and support, it means a lot. And I am so sorry to hear that you are still struggling. I was really hoping that you would have improved by now, you so deserve it. I think all we can do is to try and adopt a new perspective of time and realise that there might not be a turning point next week, next month or even in the next several months. But rather a gradual improvement with lots of ups and downs perhaps even during a few years. Hopefully sooner of course, but I think a patient mindset like that is probably the most beneficial in both of our cases. Feeling constantly discouraged and disappointed when you don't see improvement week by week is only going to put the body in a state of stress. At least that's how I feel. All we can do is to give our bodies the best conditions under which it can heal itself, and then just wait until it does. No matter how long it takes.
We will get there!
craig07920 isabelle54481
Posted
Hi Isabelle,
Thanks for your encouraging words and message, really needed that right now! You're right in the type of perspective we need to adopt, I feel I've been letting myself down lately with that sometimes just letting hopelessness and laziness overtake and I don't want to do that, just feeling a bit weary and have had a particularly hard week and a half and just had rocked me on my feet again.
Definitely we just need to ride out the difficult moments and as you say remember that improvement with things can and will come over a period of time. I'm still very hopeful and believing in your recovery Isabelle, I know you've been through so much and I empathise with the feelings of discouragement and disappointment. The thing that has been getting to me most is that even though I might not be able to control certain circumstances, it's how I've responded and just almost given in at times which has really disappointed me and made me feel guilty and ashamed. I want to have a good attitude and keep trying, it's important, but have let myself down a bit that way lately and it has taken some confidence out of me.
Thinking about you still and absolutely we must keep remembering we will get there! Hang in there Isabelle and thanks for such a lovely message - I see such wisdom in your words and love chatting with you. Praying for hope and help for us all on the forum today.
Craig
SADJ isabelle54481
Edited
Hi all, I am experiencing many of the symptoms described in this post for about 10 months. I was wondering how you, Isabelle, or anyone else who has had the same symptoms are doing now after a long time. Do you still regularly relapse and feel sick/flu/malaise-ish, do you still experience muscle twitches and eye floaters, or have you recovered almost completely? If you do so, do you maybe have some tips on how to recover faster? I still feel like exercising makes things worse instead of better, while my doctor encourages me to exercise. A reply would be greatly appreciated! Thanks!