blurry vision and chronic ebv?

Ears, nose and throat
21

Hi Katie,

When I seen your lovely and encouraging message there I tried also to find a way to send you a private message, but it seems that this function has been disabled for the time being (you used to be able to do it I know for sure). Anyway I just wanted to say thanks for such a really kind message, and also I seen just there when clicking your profile you mentioned me in a message about 6 weeks ago, I’m so sorry I didn’t get a notification about that one or else I would have messaged sooner.

I absolutely want to encourage you and reassure you with what you are going through today Katie, I think only the people who have went through EBV / mono can truly appreciate how debilitating and life changing it can be. As well as the awful physical symptoms, the mental and emotional battle it takes you through is draining and harrowing, not knowing how long you will feel that way for and if your body will ever feel the same again – it is truly frightening. I experienced this too and wouldn’t wish it on my worst enemy.

From reading your messages I can see that you are about 8 months from when you first became ill with the virus. I want to absolutely encourage you Katie with my experience, after eight months I was truly in a very discouraged state as physically I felt I hadn’t moved much forward, I still had the constant low grade fever and my body still felt so drained, exhausted and beaten up and I just didn’t feel at all myself. I felt weary after coming all those months every day hoping there would be improvement and recovery but not seeing much change, and I was starting to think this might be the 'new normal' I would have to get used to, my body feeling that way and not able to cope with normal daily activities as before. I know you must be feeling similar at this time Katie, you’ve come a long way dealing this and may be feeling scared or discouraged that things can’t or won’t get better at this stage.

I want to encourage you that things ABSOLUTELY do and will get better after the stage you’re at just now! It’s different for everyone I know but for me I felt a real shift and step forward around the 10 month mark, I started to feel more normal and human again. And my experience was it happened quite quickly, after feeling stuck at a similar level for a long time a big step forward came in a short space of time, and even though it still took a little while to get back to full health (which thanks to God only I did and you will too I firmly believe), a big pressure started to lift and it was much more bearable. I’ve read so many other people’s stories on the forum too – what you go through in the first year Katie is BY FAR the worst, the second year was like a walk in the park compared to that first year, I was able to return to work again and build it up over time and start to do the things I enjoyed again.

There is true hope Katie for your FULL recovery. It was nearly 15 years ago now since I had it, I was in my mid 20s at the time but thanks to God I’ve been well and healthy and able to live a normal life since then. Dealing with a few other issues now but they are not related to the mono. You will get better Katie – despite how awful and baffling it is, it truly can be normal to feel so awful with mono for as long as you have and also it is equally very normal to then make a full recovery after this – it is so frustrating it takes this time I know but you will get back to good health I absolutely believe this with all my heart! I am a believer in God and know it was only down to Him my recovery, and I’ll pray for you too as I can empathise with where you are just now and I know how horrible it feels.

Don’t look too far ahead if you can just deal with each day as it comes, getting through a single day physically and mentally with it is an achievement for sure. And remember the way you’re feeling now won’t always be this way, I remember thinking my body resilience wouldn’t ever be like it was before, but God does amazing things it will come back to you despite how you might be feeling just now! I can only imagine how awful it must be to deal with this through other autoimmune conditions and the pandemic. It’s so hard to keep hoping and not become so down and depressed I know, hang in there Katie given my own experience and many others I’ve read on the forum I 100% believe better and healthy days are ahead for you, and what you’re going through now is perhaps the most challenging part of all – that 7-10 month phase I felt mentally one of the worst because it had been going on for so long and was struggling to see a way forward. But there is a way forward and I want to reassure you you’re not going crazy in how you’re feeling or doing anything wrong or to hinder your recovery – it’s just the way this awful virus goes, the post viral effects are very real and intense BUT they do not only subside but disappear completely with time. I know it doesn’t always help when in the midst of suffering with it every day through, but remember there is hope and recovery ahead!

I know I used to post on here a lot but I’m no expert on the medical side of this or anything but I do want to let you know that this thing does get better and you won’t always feel like you do just now, what you’ve been through is definitely the worst part I believe. It really is a trauma going through it I know, but hang in there – you WILL get there and get FULLY better, and that’s coming from someone who also feared that things might never improve with this and felt so awful at the eight month mark also.

Please message any time Katie, you're not along with this. Hope you’re not having a bad day with things today and hang in there! Rest as much as you need to and remove stress as much as possible (which is so hard considering the virus causes so much stress in itself). Thanks so much for your kindness and encouragement too, it really is appreciated as I need it too as have been dealing with some ups and downs with my health over the past few years.

God bless! Sorry for such a long message I do get carried away a bit when I started writing sometimes!

Craig

22

Hey Craig, Always lovely to read your messages and you are more than welcome- the compliments towards you are well- deserved. I also sincerely appreciate your faith in my complete recovery. I am a high school teacher and love my job. Unfortunately, I am not in physical shape to do so at the moment. Not to mention the rising case numbers here in the US. Anyway, I am not really able to take care of myself well at the moment because of fatigue, but also considerable leg weakness and vertigo. As a result of this virus, I have had quite the wheelhouse of muscle issues- weakness, trembling and pain. It's wild. I am, however, taking supplements and working with a wonderful doctor. Now I believe my body just needs time. Your realistic time frame of healing is wonderful for people to see. I now laugh at my first doctors note that had me out for 10 days... it will take whatever time it needs to take. It is admirable that you still support those with ebv/mono 15 years after your illness- as is your faith. I have come to believe that just about any symptom imaginable is possible when an intense virus invades your body. Thankful to be able to talk it out. Have a great evening, Katie

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Hey Mia, My friend has had pretty intense eye problems as a result of mono along with some other neurological symptoms. Its awesome you got it checked out to rule out something more serious, but eye problems can certainly be a manifestation of ebv. Ugh.... sincerely hoping they abate soon. Katie

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Hey Craig, good to see messages from you. Hope things are doing alright with your back and I forget what else. Its a shame so few people remain on this forum from a few years ago, hopefully it means most of them recovered their health. I posted an update to myself a few days back. Doing really well overall and a little better every year, with a few small lingering effects, but able to live a robust and very blessed life. Wish you well!

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Hello Nick,

Great to see a message from you, so pleased to hear that you are doing much better and seeing some real progress with your recovery, this is great. Hopefully with more time the small lingering effects also will have gone completely, I'm believing with you that they will!

Thanks for the best wishes too and also asking about my back, overall I have made good progress with this thanks to God, still a few hiccups at times but hopefully it won't hold me back.

Yes I've not been on the forum much but it's always nice to hear from people who were on it from when we were posting regularly! Do keep in touch and let us know how you continue to do and take care Nick!

Craig

26

Hi Katie,

You've certainly had such a rough time by the sounds of it, I do hope so much that things ease of with the muscles issues and vertigo. It can really mess your system up so much this horrible virus, there definitely is hope for recovery and I believe you will see the manifestations with a little more time, hang in there!

You're so right, so many doctors seem to underestimate this virus and the recovery time. My doctor told me 4-6 weeks when I first became unwell with it, and if you don't start to feel well after that time you start to question why it's the case. Some people are more fortunate (not that it's every fortunate to get this virus) in that their post viral effects are less and they recovery quicker, but there are also so many people sadly who feel these awful effects for many months afterwards.

Supplements helped me a lot during my recovery too Katie, I would definitely recommend a good strong multi-vitamin and if it's possible within your health care system to get bloodwork done to check any vitamin areas that might be low so you know where would be good to target. Great you have a good doctor guiding you with this, any tips in this area always appreciated!

You're being wise taking the time off work for sure, a high school teacher certainly must come with it stresses so take as much time as you can to recover. I know it's hard though to do that, but health is a priority. I believe you will get back to work and all the activities you love again with a bit more time! Thinking about you and hope today is at least a settled and relaxing one for you.

Craig

27

hi Katy,thank you for your message..i already did mr of brain and cervical spine,i checked optical nerves and all of these are fine. i went to oftamologist also fine,but vision problems are killing me...it is already more then 2 months of constant blurry vision,everything looh grey,i was sure it is MS but doctors said it cant be with all of these test which are fine. it is terrible thing. i dont know what to think,doctors here dont know if ebv can couse problems with vision...they just dont know anything. so everyting is based of experiemce of people that i read. ..do you know what kind of problems did he had and how he fixed it? thank you :)

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thank you for your message...i am confused brcause it is for me all the time,i eear glasses but only one morning they didnt fit me well,i went to oftamologist he said it si fine,neurologist also..but my vision is like I am wearing someones glasses. terrible

29

Hey Katie,

Just wondering how you are doing this week? I hope you've been settled and the symptoms haven't been intense and concerning this week. Just wanted you to know still thinking about you and rooting for you here. Remember that better days are ahead.

Craig

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Hey Craig, I responded at length to you yesterday, but it seems as though a moderator deleted it. Not sure at all what could have been in it to cause a flag. Anyway, thank you for your kind and thoughtful message. This week has proven to be intense symptom- wise, however, I have made significant changes to my diet- focusing on mitochondrial health, meditation and judicious supplementation. It is still absolutely wild to me the range of symptoms this virus presents with. I am also walking almost every night- even though most times it is tough to find the motivation to get started. Personally, it was also a big day. I sent my oldest off to college and finished my Master's Degree. Missing my students today as it would have been my first day back with them. Mu rational brain knows this virus will take as long as it takes to get better, but my goodness is it bizarre to feel so crummy day after day. How are you? I sure hope you had a nice day, Katie

31

Hi Katie,

That's annoying when that happens if you write a message and it doesn't get through for some reason, thanks for taking the time to post again, especially when feeling as you have been. That's really good to hear that you have been out walking every night and making a real effort with diet and positive lifestyle changes, you should definitely be proud of yourself for that as I know how hard it is to do anything when feeling that way let alone take those excellent steps you have! I am quite big on vitamins and herbs which I feel helped my recovery too, so I'm always interested to hear what others find works for them.

I think that's when it really hits home and your mood can become low when you realise you're missing out on normal life and activities, I totally get that as I have experienced it too and felt the same way when going through mono. It's hard to keep positive and tell yourself it's only temporary or for a short time, but I truly believe it will be given my own experience with it and having read the stories of many others who struggled and made a full recovery with time. Patience is not my strong point either and with this virus you definitely need patience and time for your body to recover. Hang in there and remember to message any time, just wanted you to know I was still thinking about you.

Yes I am okay thanks, I have been having some issues with my hips and joints over a period of time which has been quite tough and it gets me down too. I also find it hard when you can't do the things you want to do, so I do empathise with what you're going through at present. But I can't complain God has been good to me and I have a lot to be thankful for. Hoping this coming week will be a more settled one for you that that your son / daughter settles in well at college. Congratulations also on finishing your Masters Degree what an achievement!

Take care, Craig

32

Hello Craig, I hope this day finds you doing well! I, too, prefer to take care of myself using nutrition and herbs! I believe that the mentioning of a specific protocol may be why my previous response was deleted, but I digress..... I am taking spirulina, wheatgrass, Vitamin D and zinc daily. I am also taking herbal tinctures specifically for EBV. It is tough to know how much it has helped, but I am seeing improvements- albeit slowly! Very slowly... sigh. It seems as though I will have a window of 3-4 hours in which I can function once or twice a day, but then I will have a "downturn" for an evening or morning in which I have an intensity of nausea or some other symptom that will lay me flat. Currently, I am concerned because it seems as though new symptoms are emerging- leg pain, weakness, back and calf pain along with a feeling like someone is squeezing my brain. What a wild ride we are all on! Did you experience a large range of symptoms? Did they change and morph throughout the duration of your illness? Do you make bone broth? My understanding is that it can be immensely helpful with hip and joint pain. Take care, Katie

33

Hi Mia, I apologize for not replying to you sooner. Somehow, I missed it! My friend began following a diet created by a doctor who beat her MS (it's not gone, but she made a lot of improvements) using nutritional principles. Like any virus, I think it boils down to time, rest and nutrition. Be well, Katie

34

Hi Katie,

Really interesting to hear about the supplements you are taking, always interested in this kind of thing so if you notice any of them in particular are making a difference in any areas please let me know, would be great to hear.

I've taken so many different supplements over the years it's hard to remember exactly what I was on or what really worked well for me during mono, but I do recall that a B complex vitamin was helpful to me at that time as well as a good strong multi-vitamin (there is one here in the UK called I mmunace E xtra which I have found helpful). Remember though if taking a multi-vitamin to watch also if you're taking individual things like zinc and Vitamin D so as not be taking above the upper daily recommended dosage of anything. Taking a Vitamin C supplement too is good but again there are various versions of if it's good to take higher doses or not, generally I feel taking up to 1000mg per day for most people is fine. I was taking more at the time I was going through mono but I am a bit less sure nowadays about this having read more things. Please remember though I'm no expert at all on supplements I am just going on having read a lot of things online over the years and my own limited knowledge base.

I totally empathise with those aches and pains you are going through Katie. I did experience similar things too, and also found that I could manage things in smaller chunks at times but had to rest more before and after doing things generally. Absolutely I experienced that my symptoms changed throughout the months of going through mono, the low grade fever and fatigue were the main symptoms that were generally there most of the time I felt, but I had different spells of pains in my joints, gland areas (neck, groin, chest) and just strange aches and pains that seemed to come out of nowhere.

I remember about that 9 to 10 month mark I had a bad few weeks where I was very down as I experienced a lot of joint pain in my knees and elbows and even got some strange bruising as well. I remember reading that the virus can cause almost like a reactive short term thing with joints. I didn't experience any of that in the earlier days of the virus that I can remember. But Katie a word of encouragement, after that spell where my joints were bothering me, I really noticed a bit improvement, almost like it was a final push of the virus before my body started to get it under control - so if you're having strange aches and pains, I want to reassure I had this too and in a funny way I actually remember this as almost being like the starting point of a real breakthrough with recovery - so keep this in mind if you're going through this at the moment.

Thanks for the advice about bone broth, I've read that too, I haven't made bone broth soup but I did try some bone broth capsules at one point before, maybe something worth considering for me again. Thanks again for the information, it's much appreciated!

Hang in there Katie, still believing that better times are ahead! Please keep in touch and let me know how you are doing, message any time.

Craig

35

Hello,

Yes, I've also been experience blurry vision. It's strange, as my other symptoms weren't so bad. Defiantly had the swollen spleen and some fatigue.

My blurry vision is constant and in both eyes. My doctor said this was not a symptom of EBV, Can't find much on the internet about it either. Strange.

36

Hi craig! Your positive words and thinking has helped me so much. I'm not sure if i'll ever get better or live a normal life again but i read some of these posts and gain a little bit of hope. I also private messaged you... if you could respond that would be wonderful having you experienced questions i have. Thanks!

37

Thanks so much for your kind words Jay, I really appreciate it and do empathise with that feeling of not knowing if you'll ever feel better or live a normal life again. I want to reassure you I went through EXACTLY the same distressing worries and emotions, it is truly horrible, and that most definitely you will make a FULL recovery from this virus, it can take a little time is the frustrating thing but absolutely you will get there and in no way will this stop you from living a full, active and healthy life in the future. The first six months were by far the worst in my experience and things do get much better with time until your body feels fully strong and resilient again. Have responded to your private message!

38

I hope you got it sorted out. Your doctor is wrong - I had the same thing in 2021 and saw my optometrist who then sent me to a dry eye specialist. I was diagnosed with Keratitis which is an autoimmune response (caused by EBV). I am now on a couse of eyedrops specific for those who have Keratitis due to EBV.

Also stop wearing contacts if you have any symptoms - you'll do permament eye damage. I wore contacts for years but due to this can no longer wear them.

39

Hello Katie! hope you are doing better than when you wrote this post- I as well have been going through EBV symptoms for almost a year now. I been through a million doctors and even more tests. I saw in your post that you had a doctor help you, what kind of doctor was it? I feel like no one has an answer for any of this .. I'm so drained emotionally and physically i feel hopeless .. really hope you are better.

-Jul

40

how are you feeling now?