"Mono" with neurological symptoms = Not EBV, but what then?

Ears, nose and throat
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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...?

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Wow, sorry for an incredibly long post...redface  The questions at the bottom is really the important part.

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Hey Isabelle. I’m on month 14 of the acute sickness starting. I was diagnosed with a positive mono spot 5 weeks into being sick And after seeing countless doctors. It took an ER doctor to finally think to test for it. Since then yes I have all your same symptoms. I go through constant ups and downs. I’ve mostly been able to drive through all of this thank God and clean the house and do a grocery run. But I can’t do anything physical and if I do a an evening out with dinner and a movie I will pay for the next day or week or several weeks. I too have had all the tests done. My EBV test doesn’t make any sense because it shows high antibodies for IgG but I’m still negative for the nuclear antigen and that should’ve gone positive by now. I just had Another round of tests done and I actually show reactivation for human herpesvirus number six. It’s like EBV where almost 100% of the population has it by adulthood but it lays dormant. Mine is apparently reactivated so I also have that going on. Have they checked your ferritin levels? Low iron doesn’t show up only in the CBC but you need to check your ferritin. Mine turns out is really low and today I’m going in for an iron IV and hoping that could be part of my muscle pain and fatigue and numbness. 

 I also am going to do an in-depth lyme and coinfection test just to try and rule that out. 

 No one else in my family or social circle has seemed to catch what I have but my 13-year-old daughter did start getting some weird symptoms around the same time I did. Mainly low iron and fatigue. But she’s been tested and she doesn’t have EBV. 

 If you haven’t checked out the Cortene lab, check them out. They are running a human trial right now with what they think is a cure for CFS. If it proves true it makes a lot of sense and would help a ton of people like us. It gives me a little bit of hope :-) hang in there. 

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Hi Lisa,

I have actually had ferritin levels checked (and more) and they were fine. What they did find was somewhat low B12 so I am on supplements for that. I also started taking probiotics as I read a study about them lowering inflammatory levels not only in the gut but in the whole body, specifically a kind called bifidobacterium infants. I bought a kind that contains specific type and a few others.

Thats very interesting about the HHV6. I have read about tons of people with our symptoms that have reactivations of several of the latent herpes viruses. I haven't checked my antibody levels but my symptoms actually started off with constant cold sores (HSV1) and then shingles (VZV) as the final hit that kicked off the full body aches etc. So it definitely seems that I had some sort of multi reactivation of herpes-type viruses too at that point. 

Thank you for the info on the Cortene lab trial, I read about it and it sounds very interesting! Fingers crossed that they are on to something! :-) 

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Hey Lisa, as far as the nuclear antigen go, I have it the same. I read one scientific work where they stated that low levels of anti ebna are related to chronic ebv illness. Im in month 29 since falling ill and month 36 since my health startrd going downhill. Im studying 1500 km away from my home. Some days I manage to go to school, some not. Im playing in the band. I crash quite often. I usually recover within a week though. Have little bit of burning sensations and muscle twitching, irregular heatbeat. The only symptom that bothers me is this drunk like state I have constantly. Personally, I think its just that virus absolutely mangled my immune system and even if its not active these autoiimune/inflamatory processes still take place. Fun fact: when i get ill my sympzoms disappear for a while. Im taking transfer factor (immunomodulatory thinj) and i get these fevers from it. Every time I get fever my symptoms almost disappear. That just proves my immunity is f****d. Either it struggles to keep the virus at bay or its some kind of cfs thing. Either way the rexovery is th3 same. Do what you can without crashing and slowly increase activity. I hope Im not overdoing it now, but if i didnt go to uni, i would commit a suicide.

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Wow Isabelle! I have had all of these symptoms minus the fever.....I can say that all of my symptoms are neurological. I had a positive IgM for CMV and EBV in March (I was working in West Africa) and then Dengue Fever in May (contracted either in Jamaica or West Africa - this virus can lead to neuro complications). I also got mycotoxin poisoning while in Jamaica where I was also working. My naturopath thinks the mold is my primary issue but I am not so sure. My ID doc also said that my IgMs are now negative for the viruses and doesn't think I have them active anymore. My acupuncturist, who I think is very good says that my central nervous system is inflamed (neuro-autoimmune response) and therefore I have burning patches of pain that are rooted in my CNS. This would also explain the shakiness and headaches and yes - facial and jaw pain (finally someone else with that horrendous symptom!!!)

Doctors only seem to know so much but I can tell you that my acupuncturist has actually made the most sense out of all the people I've seen over the last 8 months (tropical disease, ID, family practitioner, neurologist, kinesiologist, 6+ ER docs, mouth pathologist, osteopath, naturopath...) Viruses and mycotoxins produce waste that needs to be detoxed from the system. I am on a very clean diet and am taking binders to take out the toxins (chlorella, bentonite clay, chlorella)...detoxing may be less important in your case. I am also taking Chinese herbs along with the acupuncture treatments (meant to purify the liver as it is overloaded). This practitioner does a form of neuro-acupuncture and is targeting my head and CNS. He also hooks me up to electrodes. It is expensive however I think I am seeing improvements by going twice weekly. The re-wiring of the screwed up limbic system is talked about in ME-CFS recovery. Acupuncture helps with this mechanism somehow. I think the blood-brain barrier may be breached in cases like ours. Some virus gets passed it and all hell breaks loose. The trick now is to bring down the inflammation and purify the body - bringing our systems and organs back into balance. 

I hate to say it, we need to truly REST and RECOVER (which can be a long process).  Despite me being 48yrs old - like you, I am typically a high energy person. I was kick-boxing in December, now have been debilitated since March. I would like nothing more than to go back to work but am not there yet. For feeling like crap I am still doing quite a bit just to re-organize my life so that I can take 6 months truly off and dedicate every ounce of energy on recovery. I am looking at this as viral meningitis (which I think I had but was not diagnosed with). In your case, there may be some kind of chemical or fungal/mold exposure given many people around you are experiencing similar symptoms?...something to think about. 

Hang in there - eat clean, rest and more rest. I would add some sort of limbic system retraining (meditation, yoga, acupuncture, if you can find someone good)......wishing us both a road to recovery that is not too long. 

Take good care,

Kiki x

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YES! THIS POST!

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! 

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You are correct. I had exactly same symptoms. I believe that the virus mutates over and over again. I am still having some issues. Hopefully we will all recover.

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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).

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Since I started to see major improvement, no relapse. I would relapse at the beginning when I was slightly better.. would feel slightly better and then relapse not as bad but my recovery took a dip. And so on and so forth. Family members have shared a similar experience. Ironically it seems like if this is infectious, the virus doesn’t show up for quite some time? Both of my family members didn’t show symptoms until 2-3 months after me. 

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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

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Lob, 

I'm so sorry to hear things are so hard right now. I am also going through a very hard phase which has just hit me all of a sudden with sciatic pain which has brought on a real depression and fear again. Words can't describe these feelings Lob I know, please hang on and hang in there - I wish we understood better why suffering happens like this - I know for sure I don't want to be rich or have tones of material things, just want to be healthy and able to be well enough to fulfil God's purpose and be thankful to Him for how He's brought me through. 

I pray He brings us both through these hard times Lob - thinking about you and remember just hang on. There is still hope with God even when it feels like there is none. 

Craig

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Hey Lob.  Holy moly yes. Every time I get a cold all my other symptoms go away. It’s like taking a vacation. No one knows why and you’re the first person to get it.  Also so interesting to hear about your similar EBV tests. The nuclear antigen should have gone positive by now- and stay positive forever. It’s just so bizarre. 

I also have this HHV 6 that’s deactivated so my body feels overrun with infection. 

My quest symptom is the bone deep fatigue that also causes this constant pain. Doesn’t matter if I’m sleeping or resting or what. It’s just always there. Then some days it disappears and I feel relatively normal.  I’ll do normal things (never exercise) and it’ll feel so good. But always within a week or two I’ll crash.  And it starts all over again. 

I understand the depression. I’ve worked a few jobs (I’m an actor) and being on set makes me feel so so good and productive even though it’s a struggle. And I write while at home. And play a lot of video games. Luckily the brain fog never hit me so if I can distract myself from the misery of this virus I can keep the depression at bay. 

I’m so sorry youve been sick so long. I’m only at 15 months and I’m still in denial. Here’s hoping science makes a breakthrough. 

I’m currently on acyclovir and now am going to try an IV therapy with a drug called artemisinin which apparently is a hard core anti viral.  My doc mentioned ozone treatment but it’s just too expensive.  

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I cant do anything without thinking about it cause I always feel like a dream, cant think straight, cant remember thinks and cant visualize images or colors. I feel like Im detoriating here cause Im tired and Im pushing through. Im very close to suicide. I made a deal with myself few months ago, either I make a major improvement or Im gone by the christmas.

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Hi lob12506

We note from a recent post which you have made to our forum that you may be experiencing thoughts around self-harm. If we have misinterpreted your comments then we apologies for contacting you directly. But if you are having such thoughts then please note that you are not alone in this, and there are people out there that can help.

If you are having these suicidal thoughts then we strongly recommend you speak to someone who may be able to help. The Samaritans offer a safe space where you can talk openly about what you are going through. They can help you explore your options, understand your problems better, or just be there to listen.

Their contact details are on our patient information leaflet here: https://patient.info/health/dealing-with-suicidal-thoughts, which also offers lots of other advice on how you can access the help you may need.

If you are having such thoughts then please do reach out to the team at the Samaritans (or the other people detailed in our leaflet) who will understand what you're going through and will be able to help.

Kindest regards

Patient

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Hey Lob, geez I’m so so sorry you feel you’re out of options. Just know you aren’t.  Do you have a parent or a relative or friend who can advocate for you with the doctors? Most people with what we have are on anti depressants and they help. Have you tried them? Please seek help. Let the doctors know your mental health is declining. If they don’t listen tell a different doctor. And if you’re too tired to keep pushing it, find someone who will do it for you. There’s a small drug company that believes they’ve found the cure to cfs. They are on human testing now!! Their name is Cortene you can google them. It’s looking promising and it’s curative if it works. There’s hope. Science is finally starting to get it together and put resources behind curing cfs.  As crappy as it is to suffer from- at least it’s not 20 years ago. I firmly believe they will have treatment if not a cure soon. 

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I understand how you feel. I have pushed through just like you. It is so hard especially when you look at the life we used to have. I never got sick until this crap. I have had some of the same thoughts you have had. I just wake up and go again. I have a son that I am raising and it keeps me going. I went through a divorce also. Craig has kept me going with his words of faith. I hope you hang on and things get better for both of us.

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Hi Lob,

I'm sorry I haven't picked up your message before now, been going through a really low spell myself with things lately and just even been struggling to get on the forums to read comments and things. 

From being in a dark place myself at the moment with pain, health issues, losing my job, finding it hard to have confidence to get up and do the basics, I just wanted you to know I know what the suffering is like and how deep the hurt goes when you can't think straight or positive or see hope for the future. Lob, please hang on man, things are awful right now but don't make a decision that is permanent I really urge you man, I'm just so sorry you're feeling that way and I'm in that kind of phase right now where I don't know how to keep going on at times - it doesn't mean that I want to stop living just finding it hard to live the way things are for me right now - and I just wanted you to know I'm thinking about you and still believing in our God who I have faith is going to intervene in your circumstances and say enough is enough with the intensity of this before you are pushed over the edge man. 

As with Lisa and Brent I just want you to know I care man. I just pray there can be a change soon man, I know you are desperate Lob, I know how it feels to be desperate. You've shown great courage man even coming on here and I don't know how you have had the strength to even post when feeling so low at times. 

There is going to be another side to all this man. It's hard to see or feel or grasp when in the midst of what you're going through now, but God tells us clearly that He has a good plan for each of us and His plan is to give us a future and a hope. It's hard to hold onto that when we can't see anything going right, I know that all too well Lob. We just need to trust God with those words, it's all we can do right now and just hang on and rest when you need to and talk to people close to you and those you trust when you can man, carrying this burden yourself is too much it's important to talk to someone and tell them how you're feeling man.

Try not to put a timescale on things man, don't even think beyond the present day and moment man. Just coping with and surviving that is much more of an achievement than someone feeling good and flying high and seemingly swimming in their life. I'm still believing in recovery for you Lob and I believe it's going to happen. I believe God wants you to know that He is working behind the scenes on your circumstances man, and even though the manifestations aren't there yet, they are going to be - so just keep holding on for now and don't put yourself under any pressure or time restraints or anything man. 

Your friend,

Craig 

 

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Thanks Brent, just with me hitting quite a low at the moment with stuff just your amazing call outs for me really warm my heart and it means so much to me. I know you were so low and where Lob is at the moment too, we must all keep each other in our prayers right now. You are a true friend man.

Craig

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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!