34 months

have you been sick that whole time ? did you get better and relapse ? how are you coping ? im mentally and emotionally spent!

immunologist is pretty kind, but they arent able to help or even imagine how severe my problems are. I am at Uni right now, but Im not able to attend any lectures, I just go to mandatory classes. Im afraid this hinders my recovery.

yes ive been to 6 drs ...nothing they can do

Im better than in the beggining, but im not sure if i had any real improvement in a year. it seems like Im relapsing almost every other day.

are you resting enough ? thats such a long time i feel so bad for you ...at 11 months ive completely had it !

No Im not really. The thing is at the beginning I was pushing through since I sidnt know whats going on, then I was going to doctors for like 4 months, again hindering my recovery. Then they told me its over and I broke up with my gf so I started socializing even though I felt like s**t. Then A year after beginning I tried to go to uni and agajn didnt really rest for 3-4 months. During that time I booked some trips abroad since My mindset was : if im going to uni Im gonna be hanginout as well. So I went to israel and bulgaria. Then I realized that maybe even just activiyu through the day makes it worse. I tried to resto more but was struggling to change patterns. This realization was about 3 months before next year of uni ( the last one I had to drop out). However I again pushed and went to a festival at the end of summer because I hated missing everything I loved. Then moved over 1500 km away from home to uni, have to tske care of shopping food laundry and uni. So didnt really have a proper time to rest.

Thr thing is, right now I kinda have drive to go out and Im not really that tired, however one of 2 scenarios will happen if i go: 1 either I get tired almost instantly uppn any activity or 2 I dont and can pull of lifr normally but then I crash if its more then 2-3 hours.

On wednesday I was playing a gig ( im in a band) and I felt completely normal and full of energy, but the next night I couldnt sleep and crashed badly, even though at the gig I did not feel like pushing through or resting at all.

Also Im not attending any lectures because I dont have energy, I just go to mandatory labs. Cooking shopping is really difficult and I hardly can pull it off with careful planning and insane discipline

i too was not diagnosed until 5 months into this so like you i pushed it working out 2 hours a day . i stopped once diagnosed . you really have been doing too much so you wont get better.

i have more or less been doing the minimum for 5 months a few errands a short walk .

i have just relapsed 3 weeks ago i was doing better not great but did too much in one day and bam ! its back worse than ever .

you may need to take a break from school and just focus on getting better i understand that you are young and want to live life but you will be able to do that once you are better, youve got many years of health and travel in the future so rest up !

i have 1 month of school left, so im gonna finish and rest after. I dont want to miss another year, as this would just put a lot of stress on me and I cant stand wasting time doing nothing. and my stupid parents and doctors always advised to try pushing through. well I was young and stupid, not gonna give a fck what others think anymore

well if you can do it . why would they say 'push through ' when with this illness you need to rest

Hoping Lob that you can get some restful time when the month of school finishes. I still think you're being way too hard on yourself in terms of you saying that you did too much and pushed through too much - it's something virtually EVERYONE does with the virus in the initial stages - it doesn't mean to say you won't get better Lob, and remember it's not your or anyone's fault it's just a horrible horrible virus - you haven't done anything wrong.

It is normal that you would find it hard the day or period after playing a gig - it is a real achievement you managed to do that and definitely a good sign for sure a step forward - with further time just hoping and praying and believing that your body resilience will return and you will be able to do these things without suffering for it afterwards.

Hang in there Lob, thinking about you and still believing that MUCH better times lie ahead and that a real positive change is happening for you...

Craig

because at the time I was already supposed to be recovered

also, I have been resting a lot dont get me wrong, its not like Ive been pushing through all the time . but it was probably still too much of activity

It's not easy Lob to find the right balance, it's good and a natural thing to try to do things and to stay active when possible and so hard when you feel like it's a struggle and it takes so much out of you. There's so set formula with this it's just about listening to your body, some days / periods we can all manage more than at other times, and don't beat yourself up if it means you need more rest or also if you feel like you want to try to do something too when feeling okay. Hoping God can help us all find the right balance in our lives with these things.

Craig

You are not alone Lob. I am about the same amount of time as you.

I wish so much these things were easier to understand and comprehend - the horrible rollercoaster and mix of painful emotions when going through something so intense and horrible for so long just cannot be done justice by words, all the fear, worry, anxiety, frustration, discouragement - it's awful Brent, really awful.

I still have faith that better times are ahead for you and that there is blessings ahead for you and that barriers that seemed difficult or impossible to overcome will suddenly start to be broken down this year - I sense that for you Brent and that God is saying just keep holding on for now because change is coming.

Craig

Hey Lob- Man I’m so sorry it’s been so long for you. I’m going on month 19 and I have just about the exact same thing as you. I’m not tired mentally at all but my body gets so fatigued and then painful if I do any kind of activity. And a lot of times I have the energy to do the activity it’s just the next 24 to 48 hours I crash terribly. Then I’m sick all over again with a low-grade fever and flu like feeling and my body is so heavy and so painful. The last three weeks I have gone on a keto diet and it has helped some. May be about 15%. I’m hoping if I can continue on this for at least a couple months I will see some more improvement. My doc now thinks that I have fibromyalgia. You can get it from a virus and mono is one of the biggest contributors to it. She wants to try me out on a medication that can treat it. At this point I don’t care I will try anything! Hang in there – you are definitely not alone. I have a good friend who got a virus and then developed chronic fatigue syndrome from it and was sick for three years. Then all of a sudden one day it totally lifted and it’s never been back.

I think it’s definitely going to happen for us as well. I just wish it was sooner rather than later 😃

gosh 19 months ! im only at month 11 and have had enough ! i just relapsed badly after a few months of doing better . this virus is crazy . good news that your friend recovered but 3 years ! wow ! im hoping that too ...ill wake up one day and this nightmare will just be gone !

haha im completely opposite, I mean I am little sore when I crash, but mainly my brain goes crazy, its like I cant think, I am confused, people, places look unfamiliar, memories are unaccessible.

I might have found a key for recovery for me. Ive noticed my nervous system is out of whack, so I cant really get into relaxing state and because of that cant recharge. Right now im trying deep breathing and relaxation techniques, its helping. After a while I get tiredness and relief on my body snd I fall asleep for s bit or just feel better from relief, and can go on with my day for s bit

yes ebv attacks your nervous system your nerve endings ...so its hard to relax . in turn that takes up energy we dont have and send us into relapse . please GOD we all get better soon .

Hey Lisa,

Just hoping so much that the medication the doctor wants to try you on can really help and make such a different. Goodness knows how weary and frustrated you must be, words can't do it justice I know.

I just want to encourage you Lisa that I've read stories on here over the past 2-3 years of people who were unwell for longer than the so called 'norm' with mono but absolutely made a complete recovery still. There are some people who maybe don't notice a real different until between that 18 month and 2 year mark, and it's just that their body has taken longer to get to grips with this thing and fully recover, so just because it's been going on so long just remember this can be normal for some people and it doesn't mean in any way that you can't or won't make a full recovery still.

I'm still standing in faith that God is the great healer and is going to get you through this Lisa - thinking about you and there WILL be better times ahead for you - that is absolutely going to the case I believe it 100% for you even if you're struggling to see or believe it yourself right now.

Craig

That sounds great Lob the deep breathing and relaxation exercises - definitely that can be SO helpful and hoping it can continue to make a difference.

I've found that herbs like chamomile and cayenne pepper, as well as a B100 complex, can be great for soothing and calming the body and nervous system too.

Craig

Hi Lob,

I haven't been on this forum for quite a while since I am doing so much better now, but I just had to log in to reply to your post because of this crazy coincidence I have to tell you about!

Here it goes... I have been thinking lately that I should log in to the forum and write an encouraging recovery post for all the long time sufferers on here (I was sick for over two years and am now pretty much completely recovered). However, I have been procrastinating on it. Anyway, I had a dream just the other day about entering the forum again after so long to write my story, and then I saw a post from you... It was YOUR recovery story! In it you wrote that you finally recovered after three years of illness and that you attributed it largely to meditation (which is what I have been doing). In the dream I was so happy for you since I remember how defeated you were the last time you wrote. I have thought about it from time to time since, wondering how you are doing. So when I woke up from my dream I logged in to the forum and DID see a post from you with the headline "34 months". I was sooo excited (and a little freaked out) because I thought it was the recovery story that I had just dreamt about! Okay, so it turned out that it wasn't a recovery story. But now that I rechecked the thread and saw this comment about discovering relaxation techniques I just had to share this. I don't usually pay attention to or give any meaning to coincidences like these since I am not a very superstitious person. But I just got a good feeling about this and wanted to share. Perhaps it means that you are on the right path with these relaxation exercises and that you indeed WILL be recovered at the three year mark! I sure hope so! 😃

Thanks, I will try it. I sometimes wonder about recovery. Sometimes I think about MS, Fibro and other complications. Last few years for me have sucked. Sometimes I am ready for it to end, but I keep going.

Thanks for your post.

Thank you Craig! I see the lyme doctor today so that will be interesting as well. This keto diet seems to be helping thank goodness – and like Isabelle said I have been working a lot on meditation and calming my body down. For the longest time I would wake up starving and also in pain and I attributed those things as one and the same and I’m now realizing they’re two separate symptoms. So a lot of it has been calming my system down from going into anxiety over drive about every symptom. It does help a little bit. I am currently on a three day stretch of decent days! Praying that it lasts a little longer this time 😃 as always thank you so much for your kind words! And sending all my good wishes right back at you!

Hi Isabelle,

It is great to see a post from you, and so pleased to hear that you have been doing well and feeling much better. It is always an amazing thing when people who have been through a tough time with this and have recovered take the time to come on and share their recovery story and offer encouragement and support to others - so bless you Isabelle for your compassion and kind heart - I absolutely find these kind of posts can be the ones on the forum which really stir hope and encouragement for people who are in the darkest and most difficult phase of the virus, and it can really help sow the seeds of recovery.

I think that is an AMAZING message that you have for Lob - something so encouraging and a real sign that recovery and change for the better are on the way for Lob - I truly believe that!!!

Take care Isabelle and do keep in touch let us know how you are doing,

Craig

Hi Brent,

I think you have shown real courage and dignity in how you have endured and kept on going during this last few years, you should take confidence from how you have not given in despite being through some real dark and dreadful times I know.

It's understandable for all sorts to go through your mind about other conditions, I just sense and believe that these fears are going to be disspelled completely by God, and that something is happening for you Brent and that a barrier that's been standing in your way to progress is on the verge of being smashed with God's strength and guidance.

Thinking of you still and hang in there, the break of dawn comes after the darkest park of the night...I believe you have been through your darkest part and that new light and hope is ahead for you Brent.

Craig

Thanks for your kindness too Lisa, it is very much appreciated.

I hope so much that your appointment with the doctor goes / went well and that it can really bring you an even greater sense of hope, calm and reassurance. Hoping that this better few days can continue into weeks and months Lisa, hang in there and just pleased to hear that you have had some respite even if it's only a small bit at the moment.

Hoping, praying and holding onto faith that this can and will be the start of a recovery journey for you. Remember even a journey of 1000 miles starts with a few small steps but once you get going the momentum takes over. Hoping and praying so much for God to protect you Lisa and give that you time and space to rebuild, recover and be restored without any more setbacks.

Do let us know how the appointment went and hope you are feeling well today.

Craig

thank you Craig I definitely needed to hear that! Well – I have been officially diagnosed with Lyme disease. It actually is somewhat of a relief to know that I’m not crazy and that I have a name to the thing that I’m fighting. And we are coming up with a plan of attack so hopefully I will be able to put this into dormancy and resume leading a regular life. It’s not going to be easy and I know I have a huge battle ahead of me. But the support from wonderful people like you makes me feel 1 million times stronger than I am!

Did they just do a lyme disease test after 3 years and it come

up positive?

I had my first lyme test by an infectious disease doctor about a year ago. The Elisa came back positive and the Western blot came back negative. Then I had a natural path test me with IGenex which is way more in depth – and it came back indeterminate. Then a second natural path tested me with a different lab in October and that came back with what she thought was indeterminate. I took my test results to a Lyme literate doctor and she said that last test was actually positive. I had two positive bands for Lyme. I had a gut feeling the last year that lyme was part of my problem. My EBV titers were not super elevated although my HHV-6 titers were. So she thinks that I’m dealing with Lyme and the HHV-6.

Hey Josh- I had my first Lyme test about a year ago from an infectious disease doc. The ELISA came back positive and the Western Blot came back negative. Then last May my Naturalpath ordered a Lyme test through Igenex. It came back indeterminate and she wasn't sure what to do about it. I switched docs in October and that one ordered a third test that she said also came back indeterminate. I was so sick of no answers I made an appointment with a lyme literate doc. She looked at my tests and my symptoms and immediately said it was a postive Lyme test. I had two of the required bands come back positive (41 and 39). I had a gut feeling the last year it was Lyme. My EBV titers are almost back to normal. Although my HHV6 is very elevated. So likely I can't get ahold of the HHV6 because of the Lyme. So I'm starting treatment for Lyme and hoping it settles my immune system down. Oy.

im so sorry but glad you have at least an answer now and can focus on getting better . please God it will only be months not years as youve already gone through time with it .

Hey Josh- sorry they won't post my comments! I had three indeterminate Lyme tests and a Lyme literate doc finally saw my tests and said with certainty I do have Lyme. I kind suspected for awhile. My ebv load has gone almost all the way down. My hhv6 is still really high though. So between the two my body is just crumbling under the stress. Hoping that treating the Lyme will heal the other.

Hey Lori- thank you for the kind words! As absolutely crappy as Lyme is it is a huge relief to know what's going on and that I'm not crazy. And there are treatments we can try.

Hang in there! I'm sure I'm just an outlier. Mono on it's own can wreak such havoc. You'll heal, I know it. Whoever brought up the meditation bit is so true. Calming your body/mind as much as possible decreases inflammation and let's your immune system focus on healing. Easier said than done- but after enough time you start to understand your relapses and know they won't last forever. It makes it easier staying calm.

lisa

yes the less stress you have the better but when you live alone its hard sometimes to relax and get distracted from the illness.

both lyme and ebv are very similar i was following yolanda hadids recovery from lyme shes on real housewives . shes on instagram and doing really well so there is hope for you and hopefully for us all .

I Also have hhv6. I was bitten by a tick the same time I was infected with ebv. I contracted spotted tick infection. All of that and a divorce has almost finished me off.

bloody hell ... how are you getting through all this ?

Thank you Craig for everything that you Have done . you have a been a great support for me . I would not have made it this far without you . I hope everything is well for you . this disease has worn me down . I am tired . this disease is lonely also. sometimes I wonder if I will ever be the same again. I miss the old me.

it will take time but i assure you ...you will get it all back . i had ebv 11 years ago and now again .. this time its worse but i did get over the last bout . everything felt weird going on a plane again was one of them . you are never quite the same as you are always worried but i assure you that the good times will take over that . since my last episode ive travelled all over the world sometimes alone so.... theres hope

oh my goodness Brent. I can’t imagine a divorce on top of all of this. Although it definitely does strain a marriage. I’m so sorry you had to go through all of that. It sounds like our health journeys are somewhat similar.

I have been battling this as long as lob. I got infected in 2016 . it was one thing after another. I was bitten by a tick in the fall of 2016 . I was going through a divorce at that time . I went to visit a friend and that is when I got mono . by February 2017 I was deathly sick . I took a few weeks off from work , but that didn’t do any good . I was raised in a man does not complain . by the end of 2017 there was no improvement . found out in 2018 that I had acquired hhv6. So it is been one thing after another . I have been diagnosed with chronic fatigue . it has been a long road . I am beginning to lose hope . if not for Craig I would’ve probably given up along time ago

gosh i am so sorry you have been going through this for so long you must be a really strong man .

i am at 11 months and starting to crack this illness is a test for sure ... i think we can last only so long as we're always thinking ...maybe this week this day this month is when im going to feel better then when it doesnt happen we just get disappointed. please dont lose hope maybe check out ' yolanda hadid' on instagram shes a reality tv star that has lyme and was suffering for years ...now shes doing better and you can see from her photos that shes well travelling and living life . so gives us some hope .

Hello Lisa,

I can only imagine the mixture of emotions you are going through at the moment with the feedback you got from the doctor regarding Lyme's. I just hope and pray so much that this can mean that they can now provide the right treatment for this and it can mean that things are going to stablise and get better from here on in. This year of uncertainty and worry must have been so draining and awful to cope with, dealing with that as well as the mono, you've shown such courage and strength to get through that year Lisa - if you can get through that you can get through anything, and I believe that somehow this is going to signify a turning point for the better where you can God willing receive good treatment and move on and live a healthy life again going forward.

I will keep you in my prayers Lisa. I still believe that there is a reason for all this that's not fully apparent yet, and it's a reason that will bring blessings and joy and peace in your life. Hang in there God is going to reveal this to you I do believe that. Thinking about you and continue to let us know how you are doing / what the doctors are saying with treatment options over the coming period.

Better times ARE ahead for you, even if it's hard to comprehend now. I am convinced of that.

Craig

Goodness Brent I did not realise that you were also dealing with this as well as the mono....what a terrible time you've been through.

You've been such a great support to me and everyone on the site Brent. I want you to know that I am going to keep praying for your recovery. All things are possible with God. I just wanted you to know I'm still thinking about you and of course message any time. I still believe that better and healthy times lie ahead for you....I just get a strong sense that what you've been through is a long and painful phase that has been and is passing and that you are on the verge of some kind of breakthrough / entering into a new phase where things are much better and more settled. Hang in there Brent, God is good and faithful ALWAYS.

Craig

Totally agreeing Lori that although Brent and Lisa and you might be feeling worn down right now, that things will come back again and you will feel strong again. No wonder everyone is feeling so tired and weary. But something new is on the horizon...something is happening, I strongly feel that God is working on new beginnings and a fresh harvest for each of you...

Craig

Brent your kinds words always encourage me and gift me a lift, just want to say a huge thanks for that. But it's really only God that helped me through an awful time myself with the virus and want you especially to know that there is hope and to encourage you to just hold on right now because God gets to write the final chapter in this horrible period and I still believe a positive change is either manifesting or about to manifest in your life and circumstances.

Cling tightly to hope Brent I know it's very hard to do when so beaten down for so long, your confidence and faith will be richly rewarded. I found and find reading the book of Job and Job's story just something to give some light when things seem dark all around.

Will be keeping you in my thoughts and prayers absolutely. Things are changing don't give up.

Craig

its funny you say you have lyme, that has been actually my fear since getting ill. I could not stop thinking about it in the beginning. Ive got 2 clearly negative elisa tests half a year and year after getting ill. From what ive read elisa has very high accurqcy In long term lyme, especially with neurologic or joint involvement, so I should be in safe, but still csnt stop thinking about it.

Hi Lob,

You did the right thing getting the lyme tests, hoping very much that can put your mind at ease about that. It's hard to stop thinking about things and your mind can go all sorts of horrible places I know.

Just hoping and praying that God can fill us with thoughts that bless today and in the future and always.

How have things been for you at the moment? I really hope you things have been more stable and you are feeling like progress is being made. Still been thinking about and praying for you.

Craig

Im basically done with my assignments so Im just resting till Im gonna fly back home. Ill see what happens, after few weeks of proper rest.

my tests are all over the place. My elisa always came back positive and western blot were always different. Finally took the third test to show positive for Lyme. I thought I had it the last 10 months as well. I would keep pushing for testing if you can – and get a really good in-depth one. I don’t think it’s normal to be as sick as long as you are without any kind of proper diagnosis. And if it is Lyme- there are things you can try to put it into remission. Have you been tested for all the coinfection’s? Like a ebv and HHV-6 and CMV? This could also be an indication that you’re still dealing with something viral.

Lyme makes you pretty sick- my relapses make me bedridden.

both of my tests were properly negative and long time apart. I might do another one just to get the final closure but I dont think the problems there. I dont really get joint pain and Im not bed ridden even though on bad days I stay in bed, cause I feel very bad. most of the symptoms are neurological plus fatigue. Similar to a flu but with insane brain involvement. Also in the beggining I had amoxycillin rash which is very specific for mono if you dont have penicillin allergy (Ive never had before) and even though theres a chance to get it later in life, it would be a big coincidence.

oh Gotcha. Yeah I had antibiotic’s in the beginning as well because I thought I had a sinus infection and I had no reaction to it. I also didn’t have any liver or spleen problems. So I have no idea if I really had mono or what. I did have a positive test but I guess lyme can cause a false positive for mono. I also had very Lyme Like reactions to things like heat, massage, reflexology. All of those things that should have brought me relief made me really really sick.

before this diagnosis my doctor thought I had fibromyalgia. It definitely causes fatigue and brain fog. Although it generally does have pain that goes with it. There are some nerve blockers you can take to treat that. But it sounds like you might really just have post viral fatigue. If it’s any help – I have a good friend that had it and after three years it just disappeared and hasn’t returned for 20 years. I really hope you get some relief soon and whatever is going on just hits the road!

Glad to hear your assignments are done Lob and hoping it can mean that there's less pressure on you for a while and that you can rest more when you need to. Stress is a big factor and maybe all the assignment work has been a contributor over this period, hoping when that is lifted it means you can be feeling more at ease and better within yourself. Sometimes there can be a bit of a come down initially after exams / assignments, I remember when at high school I studied so hard and when they were finally over, I was pleased and relieved but also drained too and needed some extra sleep and rest for a few weeks to catch up.

Hoping you are feeling well today and well done on getting through your assignments - a massive achievement considering what you've been going through - you should be proud of yourself.

Craig