17 months in update
Posted , 15 users are following.
Hey all. Wow. I can't believe I'm already at almost 17 months with this sickness. Sometimes it seems like a bad dream and other times it's excruciatingly long and drawn out.
I'd love to say I've recovered, but I'm not there yet. All my tests are very strange. I've had a full immune system work up and everything shows that it's normal. My EBV titers have gone down a bit from 11.9 to 9.6. Anything above a 9 is considered an active infection. But I just retested my Herpes Virus 6 antibodies (HHV6) and they've more than doubled in 3 months going from 17 to 39 (above a 1 is considered active infection). I'm currently on day 21 of 30 of doxycycline. My Lyme disease tests keep coming back indeterminate so we figured we'd try to treat it with a month of abx just in case. So far no change- good or bad- on the meds. The next strategy is to treat the HHV6. Not sure how though- all my reading points to it being a bit of a mystery.
My symptoms are still the same- a crash happens and brings extreme fatigue, muscle weakness and pain, shaking and tremors, sometimes a low grade fever, ibs, neck pain. So far I've had no brain fog, which is a blessing. I seem to get a good week, then attempt to go to a play or a birthday party, and will crash within a few days. Then I'm sick for a good 3-4 weeks until I start coming out of it again.
To say it's been depressing is an understatement. I've turned down work, we've incurred significant medical debt. It feels as though my life is just zooming by and I'm only a bystander instead of a participant. Writing has helped. But it feels more and more like I've got CFSME. Which feels like a hopeless diagnosis.
I've tried so many things: high dose iv vitamin c, three months of valtrex, dozens of supplements, antibiotics, acupuncture, reiki, chinese herbs, diets, you name it. Nothing has been successful. I have learned what to avoid that makes things worse: exercise, stress, dehydration. As far as a painkiller goes; I did start on high dose curcumin (1 gram per day) and it does bring the inflammation down a bit.
Anyways- wanted to be real and let you know that if you're suffering, you're not alone. Thank god for this forum and you all.
0 likes, 65 replies
catchthebus lisa29739
Posted
Hey, Lisa. I was extremely sick for the first 13-14 months as well, and then started to recovering rapidly. I stopped visiting this forum around July of this year. I started studying in university again this September. Although my body has totally changed from this mono experience, and I'm catching every little flu now, I'm now totally functional again, and most of the symptoms from mono are hanging only around 5-8% of what they were during the first 13 months. Hope you get better.
kaymono catchthebus
Posted
Hi there,
How many months now since your first symptoms started?
lisa29739 catchthebus
Posted
hey there- thank you for replying! Wow your story gives me hope. I've been dreaming of the day I just feel this sickness lift for good. Did you do anything special that triggered your recovery? Diet, supplements, medicine, rest, exercise? I feel like I'm in this continual never ending cycle of relapse. I wish I knew what to do to get better.
craig07920 catchthebus
Posted
Hey Catch the bus,
It is great to see a post from you and to hear that things have been doing much better. To get through 13-14 months of this thing is draining and just glad things are looking on the up now. Things will continue to get better and stronger, based on my own experience anyway, I remember being more susceptible and having colds / flus hit me harder in the first couple of years especially after the virus, but things will settle with this as time goes on too God willing.
Thanks for the encouragement for everyone Catch the bus it was really amazing of you to come back on and give words of hope for others right now!
Craig
Samsick lisa29739
Posted
Hey Lisa,
I am almost 2 years into this and am feeling pretty hopeless.
I can get about and do things but everything in my life is an effort instead of an enjoyment.
I long for the person I used to be before Mono, just simple things like enjoying a beer with friends or going for a long walk without feeling awful afterwards.
My fatigue and brain fog have improved a lot but the absolute worst symptoms for me now are painful neck ache all the way around and down my neck sometimes into my back and shoulders. That also develops into sharp pains in my head and often headaches when over doing it.
I would be keen to know if many people have experienced these symptoms after this period of time and anything they have done to help relieve them?
Warm baths and Ibuprofen do help but nothing permanent!
Many thanks and much love.
Sam
jen83382 Samsick
Posted
Sam,
Reading this got to me. It's exactly how I feel right now. Every time it seems like things are looking up, I feel bad again. I, too, want to be back to my normal. I can't accept that a ultra light work out sends me to bed for the rest of the day. It sucks when ppl comment on how much I've been sick, like I dont already know. I am so sick and tired of being sick and tired.
I'm back to insomnia at night, no matter what I do or take. For me, this is the worst symptom. I feel like I need rest more than anything, but I cant ever get it. The brain fog is bad right now too, and I find myself wondering if that will improve.
This sucks, but we both have made improvements, even if slight. I am thankful my anxiety was only bad for about a week, but it was down right scary. I really thought I was dying at one point. Then I swore I had everything under the sun besides mono. The ringing in my ear hasn't lessened any, and it's down right annoying.
What I am trying to say is I totally understand your pain and feel for you.
I've had the aches too and find an Epsom salt bath helps.
I do hope you start to feel better soon. We will get past this. Keep your chin up and take an Epsom salt bath. Have you tried other vitamins or herbs, or even acupuncture? Acupuncture has done wonders for me.
kaymono jen83382
Posted
I feel you pain Sam and Jen. I am coming up to 17 mos too.
Some days I get really annoyed that after all this time I am not cured yet.
Today I am having a day where I am a little fatigued and abit of brain fog.
I also had terrible insomnia however things have improved alot in recent months though I still have the odd bad night.
It's the anxiety and the depression I find the worst to deal with at the moment.
craig07920 Samsick
Posted
Just want you to know I'm thinking about you Sam, I know that words can't describe what you've been going through and the pain of something going on so long - I can only imagine how weary and discouraged you must be feeling at times, and empathising as also been going through a tough time at the moment with my back and work which has been going on for 18 months or so and finding it hard to see progress or change at times. It really affects your confidence and it's hard to hold onto hope when you try and things seem to get stuck.
I still believe there is hope Sam, still believe that there is going to be a change and a breakthrough in your circumstances. I just hope and pray for that this year for you Sam, remember Jesus is the great healer we must hold onto that hope and I know it's easier said than done when things go on so long. Thinking about you and I have faith that you are going to get better, here's a short healing prayer that I've found very helpful over the last while:
https://www.youtube.com/watch?v=7PWw3p1IO_0
Craig
craig07920 jen83382
Posted
So sorry to hear you've been having insomnia and have hit a tougher spell Jen, just remember you will get there and get better again - I still truly believe it for you Jen and that this year is going to be one of hope and recovery even if it's hard to see that right now. Hang in there and don't give up - and remember not giving up doesn't mean to say you need to be in the face of doing lots of stuff, sometimes it's just about resting and taking a step back and giving your body time and space to recover.
Craig
brent_83487 jen83382
Posted
You are not alone. I have been battling for 2.5 years. Some things have improved, but not 100 percent yet. I went through a lot in my personal life also. I wish you luck. This virus is hell on earth.
jen83382 craig07920
Posted
Thanks Craig. I certainly need these words now more than ever. I was awoken last night to a very fast heart rate and my heart beating out of my chest. It was truly terrifying and I wondered if I was having a heart attack. I wondered what the heck could cause that, as all i was doing was lying in bed. I had finally dozed off in to some sort if partial sleep when it happened. How does this virus do this to our bodies? I told my mother about it today and blamed it on mono. She told me I couldn't blame mono for everything and asked when my body would recover. I had no real answer for her, and that scares me. I feel like the anxiety is starting to creep back in. It's been a bad 2 weeks. Praying for improvement for all of us.
jen83382 brent_83487
Posted
Thanks Brent. I read some if your struggles, and I feel your pain. Going through this virus is hard enough, doing it alone is even worse. It is hard to believe this virus does so much to the body. I worried so much in the beginning and now I'm just tired of worrying. Its been an extra difficult 2 week and I am hoping for some relief soon, even if its short lived. I hope you are getting some good rest tonight.
craig07920 jen83382
Posted
Oh goodness Jen that sounds like an awful and frightening experience you had with your heart racing. Just hoping it has settled down and you are feeling a bit better within yourself, this virus is so awful with everything it causes physically, mentally and emotionally.
It's perhaps difficult for your mum and others to understand just how intense and awful and widespread the symptoms of this virus can be. Again it's that invisible element that people think you look okay and that things can't be that bad, or even worse those who try to think some of it is in your head when it most definitely is not Jen!!! Those are the kind of people who really don't understand and get it (I don't mean your mum in any way by the way when I say that). It can be so hard and isolating when you feel others and especially people close to you don't fully grasp how horrible an experience it is to go through this. Again I'm no expert on this thing, just going on my own experience, it certainly seems entirely possible / highly likely that this frightening experience you had is related to mono both in terms of its physical effects and the horrible associated fear, worry and anxiety.
But remember Jen you are going to get through this, all this will get better, your recovery will come I still have great faith and belief in that. I'm struggling too a bit right now with my mood and mental health really just trying to find my way through back pain and prostatitis and losing job and it's really knocked my confidence too - definitely hoping and praying for improvement for us all this year! Thinking about you and hang in there Jen.
Craig
craig07920 brent_83487
Posted
Hoping today can be a settled one for you Brent, I've had a tough few days myself really finding this time of year hard and the reality of circumstances hitting me again, I worry about my mood and motivation and praying God can give us the strength to keep going and to endure and to keep believing and having faith in Him to rescue us and work things out in a good way, even if it's not always easy to see or feel that right now.
Still thinking about you Brent, you still got a friend here man and let's keep supporting and encouraging each other this year - that's something I really hope we can keep doing as there's real value in it and it can help build a momentum of hope, belief, encouragement and recovery for us all - we all need help with these things and it's important we look out for each other and try to help each other (even if it's only in a small way through the forums here) especially when any one of us going through a particularly hard or emotional period with things.
Craig
lisa29739 Samsick
Posted
Hey Sam. Oh man 2 years? UGH! I remember back when I hit 6 months and I just knew I'd be better by a year. Yet here I am, still struggling at almost 18 months.
I'm so sorry you've been through this. It's so hard to describe to people. Especially when we have a good day and we look totally healthy. I had a good two weeks and overdid it on new years ever. I relapsed a bit but only for a few days. Then today out of nowhere I feel so sick. I didn't do anything the last few days. I just can't find a rhyme or reason for the flareups sometimes. Hoping and praying this year this stupid virus finally goes away, for all of us.
craig07920 lisa29739
Posted
Hey Lisa,
I definitely hope and pray that this year will be a better year for you and one where this virus finally loses its sting. I can only imagine how frustrating and discouraging these flare ups and not finding a settled period to build on must be - I'm thinking about you still Lisa and will keep you in my prayers.
I still believe you're going to get better Lisa, that there is hope and your body will regain its health and resilience again. I remember thinking as the virus went on and on that I could never see my body handling any kind of stress or more activity, it felt so broken and fragile, like you have been when you do more things it just catches up with you. But truly that won't last forever Lisa, your recovery is still ongoing and your body will reach that stage where it can do things again and feel normal without suffering for it, and your energy levels will be normal and settled again and everything will just feel more in balance again.
It seems that this virus can often stay 'stuck' in a certain phase of struggle for some time without much improvement over a period of months and months, and then all of a sudden take a bit step forward in a short space of time - it can be very zig-zag indeed that don't give up hope Lisa - I truly believe there is hope and I remember that after 18 months, although I was doing a good bit better, I still felt fragile and had a flare ups, but things did continue to get stronger in that next year and was much further forward after 30 months than I was at 18 as I recall.
You ARE going to get there Lisa - that is absolutely the case and I have strong faith for you and with you that you are going be fully well again with some more time.
Craig
kaymono lisa29739
Posted
Hang in there lisa. I feel like I am in similar boat as you. I am just a few days shy of 17 mos. I thought I would be better a long time ago but this thing just seems to drag on and on.
lisa29739 craig07920
Posted
oh Craig thank you so so much. Truly. Your support and belief in me means more than anything. I think I'm making progress. My flareups are not as severe which is a huge relief.
My favorite show right now is filmed in your beautiful country and I'm determined to come see it one day soon!
I hope your back has eased up a bit and continues to heal this year. You of all people deserve to live a full and active life!
lisa29739 kaymono
Posted
Thanks Kay. We are on the same ride it seems! May this year bring tremendous healing and we can start really living again.
craig07920 lisa29739
Posted
Hey Lisa,
I do very much appreciate your and Kay's support too, your encouragement and kind words have been a great help to me also and thank you so much for taking the time to write and care about my situation, even though this is a mono forum. Yes still been up and down myself and just hoping and praying that God will have mercy and bringing healing with my back and things too, that would mean just everything to me.
Hoping so much these flare ups will become much less this year Lisa and that the intensity of them becomes less and less as time goes on. That was my experience in terms of these things, and just remember any flare-up / setback is only a temporary setback and you will get back on track again and overall continue to move towards recovery - truly believing that.
Oh really what show is it that is filmed in Scotland that you enjoy Lisa? Yes most definitely you must come visit Scotland when feeling better, there's lots of beautiful scenery even very not far from Glasgow and Edinburgh.
Craig
ren31 Samsick
Posted
the neck thing is my #1 worst symptom and I'm only 5 months in!!! did you have it the entire time or did you get it later in the virus?
kind regards
Ren