Scared & Looking for Help...EBV/possible Meningitis 9 months later

Ears, nose and throat
1

Hello everyone, I've been reading this forum on and off for months but decided to join to get some advice. Seeing people deal with nearly the exact same thing I am is reassuring but I am still so, so worried.

Last September 2017 I came down with an awful virus...HUGE lymph nodes in neck, armpit and collarbone, 104 degree fever, nightsweats and exhaustion. This lasted for 10 long days before the lymph nodes began to go down. During this time, I got a monospot test that was negative. 

As the fever was coming down, I woke up one day with extreme sensitivity to light and an odd headache right behind my sinuses. I felt foggy and out of place, but decided it was just the course of this bug and stayed in bed. 

A few days after the light sensitivity began to subside, I began feeling very scary neurological symptoms. I started to get fleeting bone pain in my legs that would only last for a few minutes and when the pain left, the muscle would be left extremely weak. I found myself unable to walk very far, unable to walk down stairs without my legs shaking terribly and feeling like pins and needles, as if they would give out. I started to experience brain fog, extreme anxiety, more sensitivity to light and sound and still swollen lymph nodes, along with more night sweats and terrible interrupted sleep (at its worse, I was falling asleep for 15 minutes at a time. It then settled at 2-hour intervals). I also developed severe back pain and serious digestive problems, but my main problem was the weakness in my legs.

I went to so many doctors and got many blood tests...I eventually was diagnosed with EBV/Mono through the antibody blood test (my IGG was pretty high, and my IGM was positive but just barely positive). They also found that my blood ferritin (iron) was extremely low. I was told that the virus had to run it's course.

It completely uprooted my life. I had to quit my job and move back in with my parents, as I could no longer walk anywhere with my shaky legs or take care of myself. I was previously a very active person, loved going to the gym. I wound up seeing a neurologist and a rheumatologist, who both think that I experienced a form of viral meningitis based off some of my first symptoms. But because I didn't go to the ER that day, we'll never know for sure.

Since I've been here, I must say that I've improved a lot. The night sweats have stopped around 5 months in, my energy is pretty good (no desire to nap at all during the day/very alert), my sleep has slightly improved and the brain fog has lifted. I haven't been doing much during the day, just resting and occasional 10 to 15 min walks with my mom.

However, now 9 months in, I am still struggling with some symptoms. My muscles are a tiny bit better but still pretty weak and easily fatigued. I still occasionally get the "bone pain", which always leaves them weak and spastic, and I often have a resurgence of these symptoms when I get my period. I've been eating SO clean with many antiviral foods.

I am SO, SO TERRIFIED that my symptoms will not go away completely I am so afraid that I have developed CFS/ME and will have to live like this for the rest of my life, it is my absolute worst fear. Two doctors have told me that it is absolutely not CFS but i can't help worrying that it is...although I don't feel tired anymore, this weakness makes me feel like my old body was stolen from me and I have this broken one now. I know EBV can cause anxiety and it is very new to me, but I can't help but panic sometimes. The stories on here give me hope that this is normal and that I will recover, but I'm hoping that others can relate to my symptoms and tell me if this really matches with what EBV can do.

Thank you so much for reading.

2

I have had the exact same symptoms listed above and during the same amount of time. I have been to a neurologist and had an MRI on my brain which was clear. My doctor thinks that I had some sort of viral meningitis too in the beginning based off of my first symptoms (constant headaches for 7 weeks and severe neck stiffness) and based on the fact that I have had many neurological symptoms. I too have been terrified that this will lead to CFS and never fully go away but I seem to be recovering slowly but surely (very slowly.. but surely) . Sometimes after a few good days or even weeks I will relapse a little but the relapses are less severe now then during the first few months so I think I am on the right track. I think we will both be fine, as long as we're willing to give it some time.

3

Thank you so much for your reply, our symptoms really sound similar. I also had a MRI, of my brain and full spine and it all came back clear. I really had to insist on getting it because I was experiencing so many strange neuro symptoms (leg buzzing, body buzzing, feeling like my clothes were putting too much pressure on my body...) and I was convinced that I had MS. Thankfully it all came back clear, and the only markers on blood tests that I've had are positive for mono, extremely low ferritin (mine was a 7, range being 25-300) and low vitamin D. I'm on many supplements as well to fix these things.

I also feel that it is a very very slow process...I can't deny that I've been recovering because i really am miles better then I was back in January, when I couldn't leave the bed and had buzzing sensations everywhere. I had a tiny relapse the other day when I pushed myself (I knew it was a bad idea, but I hadn't tested the waters in many months) and right when the bone pain started coming back I began to break down. The anxiety really does a number on me I guess! But I guess it could have been a lot worse.

4

I had that full body buzzing too and was also convinced it was MS. I described it as "restless legs syndroms but in my entire body", very unpleasant. My symptoms also come back as soon as I push myself in any kind of way or sleep too little. My remaning symptoms are a painful lymph node below my ear, joint and bone pain and anxiety that comes and goes with the other symptoms. I can't wait to get back to my old self. I will never take my health for granted again after this. Is this your first time with mono and how old are you?

5

Hi Lil Mizz,

Oh goodness I'm so sorry to hear what a terrible time you have been going through. I really empathise having went through the virus over 10 years ago and it took me 10 months to see a major turning point, I really do want to reassure you that despite what doctors say, because it goes on for this many months in vast majority of cases DOES NOT mean anything like CFS / ME, it frustrates me that too many doctors are willing to write people off as having that if something goes on for longer than 6 months, when I've read countless stories on here, including my own, which took longer but still went on to make a full recovery - the post viral effects are different from ME, post viral is your body still recovering from this awful virus and it can take this long, but then it still gets fully better again.

Just want to let you know there is hope and I still believe you are going to make a full recovery Lil Mizz. It's so awful when you can't do the things you once did, I'm experiencing the same at the moment for other reasons with back pain, also having the same issue with a counsellor who tried to tell me that I will always be in pain, but folk like that don't know what they're talking about - God is control and heals.

I don't know enough about viral meningitis but it sounds horrible, and again similar to mono it may just be a case that the virus is so severe it takes so long for full recovery to come - let me assure you that the second year is like a walk in the park compared to the first year with mono, after a full 10-11 months of struggling, gradually I was able to get back to full activity again after that thanks to God.

Thinking about you and hang in there - and remember you ARE going to get better 100% I believe that having been through it and went through all the same fears and worries and length of time of being ill.

Craig

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PS. Taking vitamins and herbs really helped me - a good strong multi-vitamin per day, high doses of Vitamin C (1000mg-3000mg per day), Vitamin D, B complex (for energy levels and nervous system) and immune boosting herbs like siberian ginseng and echinicea.

 

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I'm really worried about pushing myself too hard, I've done some testing to see how far I can go but I don't feel too awful every time. I know that lymph node pain, I still get that sometimes in my neck and armpit and the nodes itch sometimes too. This is my first time with mono, I'm 28. I was previously in the best shape of my life, with the exception of the low iron/ferritin that I didn't know was a problem. 

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Thank you so very much for your kind words, Craig. This whole thing has been very scary and I'm kind of addicted to reading other stories about people with similar symptoms. As soon as I dwell into the CFS/ME forums, those people sound very hopeless and I have a lot of fear that CFS is my real problem(even though I don't feel any mental fatigue anymore, mainly muscle fatigue). My neurologist even told me that it's absolutely NOT CFS as he said I don't have any of the "soft" symptoms. I have faith that you (and my doctors/family, who remind me often) are correct and it is just this awful mono virus. 

It's just really hard to wake up every single day and still feel so off, still feel clammy and see spots in my vision, and not break down and think "this has been going on for 9 months, it is not going away." But I will try to stay positive and think about the strides I've made. What did you do to stay positive? What symptoms did you have that lingered the longest?

I am taking a number of supplements- Vitamin D, Omega 3s, Curcumin, Ashwagandha and Magnesium for sleep, and liquid Iron. I also started to get craniosacral massages and they help. I'm thinking of trying acupuncture next. 

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Oh I know it's so hard Lil Mizz, it feels impossibly hard at times to stay optimistic and hopeful when each day and week and month seems to pass without much change. I've been going through similar feelings for back pain at the moment, it really drains at your confidence. You are right we just need to trust God that He is going to pull us through. I believe He will Lil Mizz, hang in there today and let Him take the worry and strain for you.

I found staying positive hard too, if I could do something to distract myself or keep myself busy even for a while, or a kind of routine that helped, even just a small routine that didn't involve too much effort, tried to manage a short walk each day in the periods I could, still see friends and family, talk to people who I trusted and knew would offer support and help - remember you're not in this on your own. So many folk don't understand how badly it affects you physically, mentally and emotionally. I think the symptoms that lingered the longest for me was the low grade fever and pain in the lymph nodes and general fatigue. But they all did go away with time, and they will for you too! It took me longer than you to recovery fully and I did thanks to God, and that WILL be the case for you too!

Absolutely 100% I believe that and feel sure you don't have anything like CFS, I was exactly the same that terrified me too but one thing to remember when you think that - they say 90%+ of the western world has been affected by the virus that causes mono (EBV) at some stage in their lives, meaning it it lying dormant in their systems. Most I think get it as babies or children when they don't get the full effects, but some of don't get it until teenagers or adults and then it causes the illness we have went through. BUT these 90%+ are generally walking about healthy and fit, these people don't have CFS or anything like that, so the vast vast majority of people make a full recovery and it's only the scare stories that make it to the forums generally unfortunately.

Thinking of you Liz Miss and hoping for a good and settled day, and remember you are going to get better!!! I believe that for you even if you struggle to see it yourself right now, sometimes I know for sure it helps me if someone else believes it for me when I'm struggling - and I believe it for you!

Craig

 

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Hi Lil,

I got a virus in January that manifested in tonsilitis. I was given the EBV diagnosis in early March after having a splitting headache and very stiff neck that brought me to the ER. I still think it was a form of meningitis that they didn't diagnose because they have seen worse I suppose. That was the beginning of an array of distressing symptoms that forced me to leave the job that I love.

Like both you and Isabelle, I am terrified that this will turn into something long-lasting. It is encouraging to hear about those who do recover. As Isabelle says, let's give this some time. I have now accepted to a certain degree that this is a long process. I feel possessed and also want my old body back. We must believe in the power our bodies have to heal if given the chance.

I am have seen so many docs here in Toronto. Tomorrow it's a naturopath. I will pass along any wisdom should he share any. 

Try to relax,

we got this...

Kiki

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Hi Kiki,

I totally understand your fears about it turning into something longer lasting, it is a horrible thought - but really want to reassure you that you are going to get fully better and this kind of length of time for the illness is very common for many people unfortunately. But it is equally normal to go on and make a full recovery! It's only the scare stories sadly that often get to our eyes on the internet, but remember the vast majority of people get over this, even if it takes a year or longer for some. I've read so many stories on here of people getting better after 3 months, 6 months, 9 months, a year, or even longer - and they still made a full recovery.

And I absolutely believe you are going to get through this Kiki - hang in there and thinking about you! Good luck with the naturopath, you're doing all you can to help yourself, God knows that and sees your situation and remember He is a good God that wants you well!

Craig

12

Hi Craig,

Thank you so much for your words of encouragement. Your support is a godsend for the suffering. Knowing that you have been engaged in the forum for some time and you have seen full recovery stories of 3, 6, 9 months or more is so meaningful and comforting. It is hard to believe that I can recover when all my systems are being so seriously affected.....but I am trying my best to stay positive. 

I really feel for you and your back issues. I have also suffered with scoliosis and osteoarthritis over the years that I have managed with a great chiropractor and exercise. A physiotherapist to give you the right exercises could also be a good option. It can be frustrating - I know. 

Let's ramp up the positive healing vibes for all of us today!

Kiki x

13

Hey Kiki,

Thanks so much for the kind words, I really appreciate then and I know you definitely must know how it feels to have back pain - I've been desperately just trying to get to a level like you say where I feel like I can be in control of it with exercises, have tried all sorts of therapies, I did try a chiropracter but only for a short time was thinking about trying it again, have been seeing a physio. Just praying that God can help guide me with the right exercises and help in this.

Oh definitely Kiki have read lots of stories of people who have recovered in different timescales and in different ways, some suddenly almost overnight and some over a more gradual period. My experience was that I struggled for a long time without much progress, a bit back and forward, got slightly better but nowhere near where I needed to be to resume normal life, but then in a short space of time I took a big step forward - that happens a lot Kiki so don't think because it seems to have stood still for so long that it can't take a big jump forward in a short space - that can and unexplainedly does seem to have with this often, almost as if you body finally 'got' the virus and put it in check.

Thanks for for all your supportive words Kiki and for the positive vibes - most definitely agreeing with you in that today!!

Craig

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LMM and Isabelle, 

How are you both doing? I know we all have shared very similar neuro symptoms which are so difficult...leaving us with so much uncertainty about our recoveries. I have been going though the motions of EBV since mid January, but it wasn't until early March when I was hit with the meningitis-type headache as you have also experienced. 

I am leaving to get an MRI now as I have also been so worried about the body buzzing, unceasing headache, anxiety and weakness. 

I am hoping for a beautiful recovery for all of us. I know for myself, I need to harness the power of my mindfulness to give my body a fighting chance. The anxiety can keep our bodies in a 'fight or flight' state which does not help the healing process. I am working hard to get to a state of more calm - I welcome other suggestions of how to get there  

bye for now,

peace and love,

Kiki x

15

Hey Kiki,

I feel as if I am (slowly) doing better. The people around me have told me that they've noticed a big change over the months and they give me hope that I will make a full recovery. Their support has meant so much to me, so has all the support from this forum. Actually, I will accept nothing less than a full recovery, so even though I'm still a little worried, that's my mindset.

My mind is a LOT sharper then it was in the first few months for sure, I can think as clear as a bell and have perfect hand-eye coordination. I feel absolutely zero need to nap during the day and can stay awake and alert all day, but I still am really taking it easy. I go on 2 15min walks a day and most days go out somewhere (grocery shopping, ect) and feel pretty ok. The only constant symptom I still have is the interrupted sleep, but I've gotten it down to 1 awakening per night, which is AMAZING compared to the start. If I really overdo it, I feel sore(I think my body is pretty deconditioned from being in bed), and a day or so later my lymph nodes in my neck start to ache, but that's the extent of it for the majority of the month...

And I only say that because when my period comes, some other symptoms almost always come back (mainly bone and muscle pain/weakness, shakiness, anxiety/brain fog/sad thoughts, bladder issues) and it tricks me into feeling sad, as if I won't ever get out of this. But sure enough once that week is over, I feel much better, and every month has been progressively better during that "off" time. I'm not sure if this has to do with just general inflammation or if I'm losing a great deal of blood (i had VERY low ferritin when this started and I'm struggling to get it up. I think everyone feeling these neuro mono symptoms should get their ferritin levels tested because I think it played a big part), but I'm hoping that these cycles start to ease up soon.

I don't want to jinx anything...but SO many symptoms have gone and not come back. Night sweats, the full-body buzzing, horrible stomach aches and prolonged neurogenic bladder, the full-on insomnia...like many people have said on this forum, I think time is the only real key to beating this, and as time goes on, our symptoms will drop off one by one. 

I've also been practicing mindfulness, mainly through meditation and it has helped a LOT. I've read so many stories about how meditation can be the key to healing the body, and I don't know if it's helping heal damaged nerves or help my immune response relax, but it has been such a big part in my recovery. I've also had craniosacral massage (only 2 sessions and they did really help), and plan on trying acupuncture and possibly lymphatic drainage massage. I'm also considering going to a chiropractor, because all this time in bed may have done something to my back. I still eat a super ultra clean diet (80% veggies and fruits, 20% protein, lots of blueberries) and I'm gonna try juicing as well. 

I also want to say that I think this virus throws off our sympathetic nervous system and kicks it into overdrive, so we're constantly in "fight or flight" instead of "Rest and digest" and meditation helps with that too. I read that there are lots of ways to help rebalance this, including laughter! So I try very hard to make myself laugh every day.

How have you been feeling?

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Hey Lil Mizz,

It is really great to read that things have been going in the right direction for you, it sounds like you have been through such a tough time with this and that you are doing all the right things to help yourself - I can sense real wisdom in how you're trying to do everything you can to help yourself, and glad that mindfulness and walks each day are helping!!

You definitely will get back to full health still Lil Mizz, absolutely, I remember reaching a level with the virus where I had improved somewhat but still felt a way off like what I had been before I had the virus. I worried that this was as good as it was going to get and be the new 'normal'. Let me reassure you that this phase is normal, and that you do get past that phase too, even if it sticks for a while it seems, to the stage where you feel your body is fully resilient again and able to cope with normal life.

Thinking about you and definitely your story gives hope and encouragement for others at the worst stage of the virus right now - hoping things continue to move forward, I believe they will and remember just don't overdo things now and remember any mini-setbacks (hopefully not though) will only be that - minor and short-lived.

Hoping for a good day today!!

Craig

17

Hi LMM,

Thank you for sharing so much of your healing journey here. I agree that the fellow sufferers on this forum have been so supportive and often provide light where it's hard to find any. You are very fortunate to have a couple of loved ones around who do their best understand and support you as you go through your recovery process. It's so great that you have finally turned a corner and that your peeps are truly beginning to notice...BRAVO!!! That must feel amazing. I do also really understand how much you want to go back to the old you - the you with the vitality and energy that partly defined your person. I share that wish although I feel like I am still deep in the woods, not sure how and when I will get out but like you I continue to tell myself that I WILL get there. I feel like I am in a kid's storybook where I meet creatures along my path....some very nasty (viruses and their symptoms) and some very kind (supportive people and internal life force)...just hoping I make it out without being undermined by the nasty ones. When we do emerge from this dark period - and you seem to be closer than me, I think it is so important that we work within the limits that we are presented with. Ultimately we may even be stronger than we were in some ways and in other ways perhaps less - but we are resilient and we will learn to compensate in ways we may not be aware of. The body and mind are quite incredible and seeking balance. 

It's so encouraging to hear about your clarity of mind and overall energy level. This gives me a lot of hope! Our neurological symptoms overlap in SO many ways....My brain fog descended on me in early March and I continued to work oversees until I was completely overcome by a splitting headache which coincided or unleashed so many symptoms that I believe are related to my autonomic nervous system assault. I had to leave a job that I loved and am now living alone (with supportive friends that are close by). I am struggling to understand whether the virus enterered my central nervous and peripheral system and is continuing to play havoc or if my immune response is going haywire....probably both but I will probably never really know. 

I will continue to investigate my symptoms through the mainstream medical model here in Canada but once I gather a little more energy, I will try to work gently with my body. What you describe about meditation to help damaged nerves and the immune response resonates with my thinking...but like you, insomnia has been plaguing me and consequently, integrating any healing modalities is very challenging. I have been using Imovane which I am in the process of weaning myself off. I think this will be a huge hurdle but I must continue to be patient....I met a kundalini yoga instructor who talked about this yoga practice in terms of energy work and breathing... I am quite sure my autonomic system has been seriously undermined - this practice in combination with walks in nature and mindfulness work may get me on the right path when I find the strength. Craniosacral massage is also an excellent idea!....I will try to find someone here in Toronto. I have a great chiropractor who also does acupuncture. He is truly a natural healer and I know he helps me now as he has over the years.  I am with you on the super clean diet with the high blueberry load ....and I bought  juicer. I got the BREVILLE Juice Fountain Compact Juicer BREBJE200XL and am very happy with it. 

I couldn't agree with you more about our sympathetic nervous system being screwed up and being in overdrive. I went to an osteopath yesterday and I don't think he has ever felt a body buzzing the way mine was. We discussed trying to find ways to move "fight or flight" into "rest and digest"....work in progress - no quick fixes here.......YES to laughter.......I always live my life with humour anyway.....but I think it's required now more than ever!

You are doing so much to help your body and mind. I wish you continued positive steps towards the homeostasis that your body is looking for. 

Take good care,

Kiki x

 

18

Hi again LMM!....given that our neuro symptoms are so central to our experience I am wondering if you experienced weight loss. I am a tiny person to begin with but really am struggling. I am eating 3 meals a day (similar to your plan but with a little more fat) and if just doesn't seem to go anywhere but through me. I am 48 - have been fit all my life and have weighed around 112 lbs consistently since my twenties. I was down to 105 lbs. I feel like the wind will blow me away!.I was thinking it's the nervous system in overdrive.....what has been your experience? Kiki

19

Thank you so much for your kind words, Craig...your support has meant the world to me, and I know the many others on this forum all appreciate the time you put in to reading and reassuring those of us that are still trudging through it. And I'm so relieved to hear you say that you experienced the phase of "well maybe this is the new normal, oh well..." because I still have a little fear of that...but it's so reassuring to feel like it can continue to get better.

20

Hi again Kiki! Hope you're having a good day... 

I know exactly what you mean about feeling like you're stuck in a storybook, sometimes the cycle of these symptoms trick me into feeling like i'm all turned around in the woods. I'm at the 10-month mark, where some posters here have said they began feeling slightly better. I don't know exactly what did it for me, but it was only a few months ago that my mind began really clearing up. I had started doing a few things, like increasing the amount of wild blueberries, the meditating, going for the walks, even walking barefoot outside (which I think actually did help!). The day before my period starts I feel maybe 12 hours of weird brain fog, and I do stupid things for no reason (take out a bowl to prepare blueberries, open the fridge, forget what I want, reach for a second bowl for some reason...) but it never lasts long. 

I agree that the autonomic nervous system has played a BIG part in this, and it's scary to feel so out of control of your body. And I so relate to leaving a job that you love I worked in the film industry, it was SO fun and exciting. But I know that both of us will find our ways out of it so we can go back to doing the things that we love. I know that we may never figure out exactly why or how the virus has effected us in this way, and it still makes me a little anxious to figure out exactly why so I can prevent it in the future, but the way I see it is that it did hack into our nervous systems and "overclocked" it in a very short amount of time. So now we have to relax as much as we can to sooth it back down to "rest and digest". 

That's so cool that your chiropractor also does acupuncture! I hope to find someone that I trust for both of those things. Especially a chiropractor...I have a very weird problem, one that I couldn't even find online anywhere, where every time I lay on my stomach, my legs begin to go absolutely numb. When I do certain stretches, I can feel "electric" pulses going down my legs. My neurologist says it has to do with the "meningitis" damaged nerves that may feel pinched in this way, but I also remember kind of hurting my back early on when I first got sick. So I'd like to get a good opinion on it.  And yes, Osteopaths really can help, I think they can really feel the subtle changes in the body. Mine told me that my problems were more dominate on the left side of my body, which was interesting to hear. I have hope that both of us will find our way and we'll be our old happy, healthy selves with time.

As for weight loss, I did experience a lot of it in the beginning. I am 28, was previously 130lbs of mostly solid muscle (thanks to the gym!) and had been that way since I was 16. When I had my acute mono symptoms, I completely lost my appetite and couldn't bare the thought of food when I had the low grade fevers, and dropped to about 115lbs in the first 3 months. I was also having some strange stomach issues, where 90% of the time I was so constipated that it felt like nothing in there was moving at ALL. I had a CT scan done around this time and it showed all the gas that was trapped, but it was just NOT moving no matter how I stretched or moved. Very painful. Then I went through a phase where it was constantly painful, and it felt as if I could literally feel the pain of food moving through my body. 

However, once I had the strength to stand at my kitchen, I made a point to eat even when I wasn't hungry. I began eating high-fiber fruits and vegetables (apples were the best! Always helped get my stomach digesting) and lots of lean meat, and I also began taking a probiotic. I got a jar of manuka honey and had a spoonful or 2 a day, which I bet helped with calories. It only took a few weeks of this for my body to respond and soon about 90% of my stomach symptoms went away! It felt like a miracle. It was at this point that I started gaining weight back, I'm back to about 123lbs.