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
KS2017 lisa29739
Posted
HI Lisa, im so sorry to hear that you are still struggling with the effects of this awful virus. keep faith in your body's ability to heal itself and make sure you continue to support yourself during the healing process. Keep advocating for your health and keep seeking answers, you will get better, it might just take some time.
I am about 16 months in and for the most part am feeling pretty good. I am back at work working fifteen hours a week and will increase my hours again in January. I had a friends wedding over the weekend which was a two hour flight away and then lots of buses and trains to reach the venue and i even walked 12km on the saturday. on top of that i slept terribly both nights so was expecting a massive crash but almost unbelievably i was fine and even went to work on the monday and did every rostered shift this week.. The only symptom that really remains now is the anxiety and panic attacks mainly before and during my period. I really hope that goes away soon as i find it very distressing. but i am so thankful that the other awful symptoms seem to have disappeared- finally!!!!
Praying that you have some good days ahead for the weekend and that your full recovery comes soon.
craig07920 KS2017
Posted
Hi KS,
It is lovely to see a post from you, and really pleased to hear that you have been making progress and seeing some improvement. It is a great achievement getting back to work 15 hours per week, and to walk 12km that is tremendous!! Hope that you enjoyed the wedding, and of course just remember take things easy this week and catch up on the rest as such a journey and level of activity is a lot for anyone, regardless of mono!
Hoping so much that the anxiety and panic symptoms disappear KS and that these can fade away completely over time as you continue to get stronger and feel better. Remember it takes time for your confidence to come back after this thing, it will come though KS and I know just how awful anxiety and panic can be so remember be kind to yourself and remember in any times like that just remind yourself this is a temporary episode and a minor setback and that you will feel better and stronger again.
Don't underestimate how much progress you have made, take great heart and confidence from getting back to work and surviving the lows and hard times of this last 16 months - words can describe how hard that is to do for sure, but you really have shown courage and determination and even if not feeling fully back to yourself yet, remember that will come with time KS. If I remember where I was after 16 months I was in a similar place starting to do better, but fast forward another 6 / 12 months I was even stronger again and my experience it will keep going that way until your full health and body resilience returns.
Wishing you and those close to you a health and happy Christmas when it comes, and well done again on all the progress you've made!!
Craig
kaymono KS2017
Posted
Hi KS2017, I read your msg with interest. Next week will mark 16 mos for me also. I started having symptoms in August 2017.
I have days where I feel fabulous and other days where I feel rubbish. Still, I am a long way from where I was say a year ago.
I continued working full time throughout though it was never easy.
For me, the symptoms that still linger are anxiety, mind depression, fatigue, floaters/blurred vision, brain fog, insomnia. These symptoms are not continuous though - they come and go. The longest period I've had where I feel normal is about a week - there's always a mini crash somewhere.
lisa29739 KS2017
Posted
Hi KS! Wow this is really wonderful to hear! I can't imagine going back to work on a regular basis! I was able to shoot a few commercials in Sept/Oct (I'm an actor) but it was so taxing to appear healthy and normal and perky I had to take a break for the rest of the year. I often wonder if I had a job that I could do and I didn't have to appear super healthy- if I could manage it better.
And holy crap 12 km??? That's a ton! I think I managed a few trips to the mall with my daughter but that's about it for walking long distances. It's funny- I can do these physical things. It's just the crash they cause the next few days is so awful that I don't even try anymore. I can manage dropping off/picking up my daughter from school, going to the grocery store, doc appts., cooking (sometimes) and basic cleaning. That's about it right now. I still have that flu like feeling 75% of the time and it makes doing anything really hard.
I'm sorry about the anxiety. I had that horrible in the first 2 months. It was terrifying. Now I only get a panic attack when I'm driving or someplace in public and a relapse starts to happen. Usually I start feeling light headed and then that triggers the panic. It's not often thank god.
I'm so happy you've started to road to full recovery and I'll keep praying you continue on in great health!! When did you start to see a major improvement?
KS2017 craig07920
Posted
Thank you so much for your lovely reply Craig, it really means a lot. And that is really good advice about the panic attacks only being temporary. They seem to come on for no particular reason at all, so i'm hoping as I get closer to full health that they will disappear altogether.
Like you know it's so hard to keep focus and to stay positive when the bad times just seem to be never ending. Surely our experiences will elevate our future resilience levels to super human levels?
How have you been in the past few weeks? Have you seen any improvements in your own condition? I pray that things will settle down for you health wise and that 2019 will be a year filled with many blessings and 100% health.
I hope you have a wonderful and happy Christmas too, here's to seeing the end of 2018!!!
KS2017 kaymono
Posted
Hi Kaymono
I also began feeling the first symptoms of mono around August last year but tried to ignore them and carry on, which only lasted a month before I crashed. It's probably a good thing that we had no idea what lay ahead at that stage - what an awful 16 months it's been! I don't know how you managed to work full time through the entire thing, I guess sometimes life doesn't give you a choice though. I'm glad to hear that you had noticed some improvements, and that your symptoms aren't continuous. Whenever I get frustrated at still not being 100%, i remind myself to be thankful for at least being functional now- I can work, socialise, walk for exercise, which is such an improvement like you said, on a year ago when i could hardly lift my head off the pillow.
I think we all want to compare our recoveries with other people but we are all unique and have unique circumstances e.g. having to work throughout, versus not. I have faith that you will regain your health 100% again, it just needs to be in your own time. Keep listening to your body and just rest when the crashes happen. You will get better.
KS2017 lisa29739
Posted
Hi Lisa
What an awful experience this mono is- people who haven't been through it just have no idea what it's like to lose faith in your own ability to heal and to feel like a hostage in your own body, with no idea what's happening and why things don't seem to get better. I think that we will all recover fully, it will just be in our own time. Throughout the illness we've each had unique challenges and constraints to deal with in terms of how much rest we could afford, and we've all just done the best we could to get through it. Thank you for your well wishes, it is a big relief to start seeing the light at the end of the tunnel, and to feel like i'm walking quickly towards it. Having to be a mum throughout this whole experience i can imagine was very difficult and you should be proud of yourself that you still manage to do pick ups, groceries, cooking etc. I know how difficult doing anything can feel when you're just not well. Feelign like you have the flu 75% of the time must be awful, i'm so sorry.
I remember my first wave of improvement was around 11 months, after which i went back to work 8 hrs a week, which at the time was very challenging and overwhelming. I had a three week relapse in October (14 months) after we had to move house and my partner started a new job in the next city, which meant I had to deal with the day to day stuff like shopping, cooking, cleaning etc. This relapse was really depressing, because i felt like i'd just had my freedom back, and then bang - straight back to square one.
But i feel good again now, and just continue to listen to my body. I've also started trying to do more exercise just in the form of walking, which i think is helping to restore my confidence in my body, and is helping to build up my muscles.
I hope today is a good day for you, and that you can have some relief from your symptoms to just enjoy the day. Praying that your full recovery comes quickly.
Sweebee KS2017
Posted
Hi KS
Im so happy you are starting to feel abit more normal, it truly is inspiring and lifting for all of us on here 😃
You are about 2 months ahead of me, and it gives me alot of hope for the future for my own healing to hear that you are on the mend.
Personally the fatigue and dizziness is whats hanging on the longest. It really is amazing for you to be able to walk 12kms, its amazing and you should be proud. Wishing for the day when I can walk that far without feeling horrid, yet Im grateful to be able to work a 40hr week instead.
Thankyou for your update and look forward to hearing from you again soon.
❤️
craig07920 KS2017
Posted
Hi KS,
Thanks so much too for your kind and lovely words, it definitely means a lot to me!! Last few weeks I have been more settled emotionally, but still experiencing some of the problems with my back and prostate, and still trying to find a way to move forward in terms of work situation and coming to terms with losing job recently. It's not been easy KS but God has been helping me for sure, definitely hoping for better times ahead for all of us!!
Also wishing you and your loved ones a peaceful, happy and healthy Christmas KS! Absolutely hoping and praying there is a positive reason to come from our hard times that maybe we can't quite see right now, and that our resilience and health will be strong and good again, God knows the bigger picture.
Do keep in touch KS and remember for sure any anxiety / panic is temporary, for me in those moments just simple breathing exercises and telling myself this will pass and things are going to be okay and settled again can help, and of course talking to someone I trust. Listening to relaxation videos / healing verses on You Tube whilst lying down also been a great help to me.
All the best and remember you are gonna get through this and be FULLY well again KS - I truly believe that in my heart.
Craig
craig07920 Sweebee
Posted
Hey Sweebee,
Don't undersell yourself in how MASSIVE an achievement it is that you have been working a 40 hour week - getting through one day let alone one week let alone every week or doing that when feeling how you have been feeling is a great achievement, and it won't always feel as hard doing that as it does right now - you will feel better and there is real hope. It is definitely great when others post their recovery / progress / improvement stories as it generates real hope for others on the site, definitely encouraging as many people as possible to keep doing that it's a great great help to everyone!!
Still thinking about you and hoping you can manage to get some time off / a break over Christmas to take things easy - you deserve that so much!
Craig
kaymono KS2017
Posted
Thanks very much KS2017. I agree with what you said. We are all unique and so our recoveries will differ.
Working through it was hard at times but at the same time it kindly gave me an escape by focussing on something else.
The most challenging part of this illness for me is the impact it has had on my social life and fitness. I am a member of a running club and 2 years ago I had run my first half marathon. Most of my friends are also from the running circle so when you are in a situation like this when you are unable to participate in running events, you soon realise how little you have in common with alot of these people.
KS2017 Sweebee
Posted
Hi Sweebee, I hope the past week has been full of better days for you with minimal symptoms. Thank you for your kind words and encouragement. It's pretty incredible that you are still working 40 hour weeks, that is such an achievement given the circumstances! There is a lot of hope for the future, and you are healing too, each day your immune system is winning more of the battle, even though sometimes it really doesn't feel that way.
I hope you continue to notice improvements along the way, and keep faith that you will heal completely, and one day soon you too will be able to walk 12kms without a second thought 😃
KS2017 craig07920
Posted
Hi Craig
I'm sorry to hear about you losing your job recently. I hope you can find peace in what's happened, and that some new doors and windows open for you work-wise in 2019.
I'm glad to hear that you've been more settled lately, it's so terrible and distressing when anxiety about ill health sets in and seems to make everything so much harder to deal with. Thank you for your suggestions about the anxiety, I keep reminding myself of your words 'this will pass, its temporary' and that has really helped when it sets in.
I hope you have a good couple of weeks leading up to Christmas, and soon we can all bid 2018 goodbye forever, with a brand new start in 2019!
craig07920 KS2017
Posted
Hi KS,
Thanks so much for your kind and wise words, they really do mean a lot. It is a relief in many ways that I don't have to go back to that workplace, although also some guilt and shame associated as well which I'm trying to work past and keep believing that I can get through this and hoping and praying so much God has another plan and purpose ahead for me and I can be fit enough and hard working enough and determined enough to fulfil His plans.
Hoping so much you have a good and settled run up to Christmas too, you've been through so much KS and I see such strength, courage and dignity in how you and Sweebee and all the people on the site have been coping and battling on this year through the hardest of circumstances.
Still believing God is good and that better times are ahead, praying He will lead us out of the wildnerness and onto safe and peaceful ground again and for His Word to be our rock.
Thanks for all your support KS and continuing to think about you and believe in your FULL recovery - and absolutely in any tough moments or days or spells, do remember that it is only temporary and it will pass - because it is and it will!
Craig
kaymono lisa29739
Posted
Thanks for this lisa. I feel your pain. Next week will make it officially 16 mos for me so I am not that far behind you. Like you I was hoping I would have fully recovered by now. I have good days and bad ones. The past week it has been one day good and then one day bad and so on for me. Like you, the longest I have had of fabulousness so far is about a week at a time. I always seem to have at least a mini crash after about a week. At the moment though my crashes don't seem to last more than a day or so at a time.
I have also realised some of my triggers such as certain foods, over thinking, stress, getting over excited, gluten and poor sleep.
I have a week off work next week so hoping it will help to speed up my recovery.
lisa29739 kaymono
Posted
Hey Kay thank you for this response. We are definitely on a similar timeline. That's awesome that your crashes don't last long!! It gives me hope! Mine usually start slow and build to full on crash, then linger about a week or two and then slowly start coming out of it. I wake up in so much pain in my neck/shoulders/arms and sometimes my legs. It's just bizarre. As soon as I get up it starts to go away and then I just have the fatigue. I get an mri on Monday finally. Just want to rule out MS. I know it's just this horrible virus but it feels really frustrating that nobody knows how to treat it.
Have a wonderful week off! I bet it's going to be great for your recovery!
craig07920 kaymono
Posted
Have a great week off when it comes Kay - take things easy and do the things you enjoy doing and get good rest and relaxation time in!!
Craig
kaymono lisa29739
Posted
Hi lisa,
You are definitely on your road to recovery. I am confident we all will see a massive improvement in the new year.
Today for instant I feel abit hazy and don't know why - however it is not enough to affect my day. I also woke up with pain in my shoulder but dunno if it is just awkward sleep position.
Let us know how your mri goes. I am sure it will be fine.
kaymono craig07920
Posted
Thanks very much Craig. Will do 😃
lisa29739 kaymono
Posted
Thank you Kay, your words of comfort mean so much. I will definitely update after the MRI.
oh- I get eye floaters too! Just on one side. So bizarre.
kaymono lisa29739
Posted
yes, my eye floaters are only in my right eye! So annoying. Some days they seem to be on a mission to provoke me and other days I don't even notice them.
craig07920 kaymono
Posted
Hoping this haziness and these eye floaters settle down Kay, goodness knows you must be so fed up and weary of everything. Still thinking about you, and definitely hoping that you are feeling relaxed with your week off work - you have earned that for sure and remember this is time for you!
craig07920 lisa29739
Posted
Hey Lisa,
Most definitely let us know how you get on with the MRI, really hope so much the results can be good and help to reassure you and put your mind at rest. It is wearying and horrible to have to go through all sorts of tests and things, thinking about you and remember you will get through this - hoping so much for the day we can all steer clear of doctors appointments because we have no need to see them because feeling much better.
Hoping for a peaceful weekend for you Lisa, hang in there, still believing your breakthrough is much closer than it might seem right now.
Craig
lisa29739 craig07920
Posted
thanks Craig! Amen to that. I cant wait to stop seeing doctors and stop taking so many pills. It'll be a dream! Have a wonderful weekend yourself! And Happiest of Holidays to you!
craig07920 lisa29739
Posted
I definitely hope that time is coming very soon for you Lisa, and me and for us all. Sometimes finding it hard to keep the right attitude and sense of perspective with everything that's been going on for myself too lately.
Thinking of you Lisa and continuing to keep you in my prayers - hoping for better times ahead and remember God is a caring and merciful God and wants the best for us - praying for His help and refuge and healing today.
Hoping for happy and peaceful holidays for you and your loved ones too Lisa, and for a time of hope and breakthrough and recovery.
Craig