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.
Lisa,
I'm so sorry. I truly hope you get some relief soon.
My journey has been challenging as well, though it sounds like your road has been more difficult. You are in my thoughts.
Hey Lisa, I started feeling poorly around the same time as you, August of last year. Was diagnosed in November of last year. Please try to not lose hope, healing can happen for you. I've been doing a lot better as of late. My lifestyle is pretty much normal except I don't work out quite as intensely as I was doing years before. I occasionally have little spells that feel mono-like but they are usually only minutes of my day that otherwise is pretty happy and good. Its been really gradual and up and down for me though. I always took solace knowing that even if I wasnt fully better, at least I wasnt getting worse and worse. Hope thats sort of true for you too. Stay positive as much as you can, it does make a difference. Wishing you a good holiday season.
Hi Lisa,
Your post above was so heartfelt Lisa, that comes across strongly and the personal struggles and battle you have been going through I know words can't do that justice or describe how painful and hard things must have been for you this last 17 months.
I just want you to know I'm thinking about you and will keep you in my prayers. When you go through something for such a long time and try so many things and can't find the breakthrough you need yet it is so draining and an awful experience Lisa. Whilst in a very different way being going through my own kind of journey / battle with health / work issues for a similar length of time, since about June 2017, and I totally empathise how hard it is to keep going and keep depression and discouragement at bay.
Lisa all I can say it is very clear from your post you are doing everything to help yourself. I certainly believe sometimes we are push to the brink and our very limits before we are brought back again, sometimes in my situation I know I've been trying just to say to God even though I don't understand what's going on or why it's going on, just to trust Him that He cares for us and that His ways and thoughts are better and higher than ours and that He still has plans for a good future for us. And I believe that He does for you Lisa, there is hope still even though it might not seem that way now, I truly believe in my heart that a breakthough is going to happen and you are going to get through this awful time and get fully well again and have healthy and happy times ahead. Praying for that Lisa and thinking about you - do keep in touch and message any time.
Craig
Thank you so much Jen. Your words mean a lot. And I'm so sorry your road has been hard too. This illness is hard to put into words. While I don't wish it on anyone, I'm thankful for people who understand. I hope next year brings you some major improvement!
oh my gosh Nick- it is really wonderful to hear of recovery! That's amazing! All I want is to be able to go back to work. I can handle putting off exercise awhile longer. Just want to be able to do normal things again. The mornings are so hard. Everything aches the fatigue is strong- even after 9 hours of sleep. It's so strange.
You give me hope- and thats a really big gift so thank you!! I'll continue rooting for you and your recovery!
Thank you so much Craig. As always your words bring a lot of comfort. Yes being sick this long and in pain this long without any real relief is just awful. Sometimes I can convince myself that it's all making me stronger. And imagine what I will do once I'm fully well. Those are good moments!
I'm still plugging along- I do still have hope and I'm thankful for it.
I'm so so sorry you've been dealing with your own pain. Sounds like right around the same time mine started too. Just awful. We all here are rooting and praying for you and your recovery Craig! Hang in there and know you can message me anytime! I'm grateful for technology and the fact that we can offer each other support from two separate corners of the world :)
wow! i just left the doctor today checking on blood work. i found out 3 weeks ago that i had hhv 6 also. my numbers were high at that time. i got some more results today and the numbers have dropped. i have been dealing with this over 2 years now. i am beginning to see some improvement. i wish you luck in your recovery. it has been a horrible 2 years for me. divorce, tick bourne illness, ebv, hhv6 and who knows what is next.
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.
Hi Lisa,
Thank you so much for your amazing words too and for your prayers means a great deal to me it really does! I will continue to keep you in my prayers Lisa, I'm definitely standing with you in that hope that we will get our breakthrough thanks to God.
I do believe that this experience will make you a stronger person for sure Lisa, I remember when I had it that it definitely put a lot of things into perspective for me. Made me realise that many of the things that had been bothering me and had worried me before were so insigificant. It sounds very silly now but the year before I got mono I noticed that my hair was thinning, spent a bit of money on various treatments to stop hair falling out - when I had mono realised if this was the worst of my troubles then I was doing rather well indeed!! I know that's a bit of a silly example but makes you realise how precious your health is and that your health is your wealth really, and how much ALL of us take things too easily for granted when things going well - I know for sure I have done way too much.
Anyway Lisa hoping for a settled week for you and ditto remember you can message any time and absolutely it is a great comfort to me that I can chat with and keep in touch with such kind and good people like you. I do believe there is something special about this forum and the people on it and that the togetherness and encouragement of everyone going through hard times on it counts for something very important and is a factor that is going to help in everyone's recovery for sure!!
Craig
Hi Brent,
It is encouraging for sure to hear that the most recent blood tests showed the the numbers have dropped - I hope very much this can be a sign of recovery and improvement. You've been through just the worst of times Brent, I can only imagine how hard it has been dealing with this one thing and another over such a period, I still think you have shown amazing courage in how you've been coping and pressing on in adversity, and that it's not always going to be this way, that something is changing and the breakthrough is coming into manifestation. Praying for that so much Brent, continuing to think about you and keep you in prayers, and hoping that the doctors are being helpful and giving the right advice and support medically and emotionally regarding this HHV and everything that has been going on, and that these latest blood tests means that things are going in the right direction with recovery.
Still believing that God has outstandingly good plans for your future Brent and that a line is going to be drawn under all this and victory and good health is going to come. Hang in there and remember message any time - I think about you and wonder how you are doing even when not posting on the site.
Craig
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
Hoping you are managing okay at the moment Jen, and that things are stable and you are getting plenty of rest and able to be as stress-free as possible with things. I know much easier said than done given this thing in itself is a terrible stress. Thinking about you and still believing that you are going to get through this and return to full health again, hoping and praying for a year of recovery in 2019 believing in that!
Craig
Hi Nick,
So pleased to hear that you are generally feeling a good bit better, it sure has been a long road by the sounds of it and the experience of having to live through that is so tough I remember from my own experience Nick.
Remember your body will continue to get stronger as time goes on from now Nick, and God willing you will get back to the stage where you can work out at the levels you want to again, of course it's important to be wise and sensible about these things, it took me time to get back to full and previous exercise levels but did get there thanks to God.
Thinking about you and wishing you and your loved ones all the best and good health for the Christmas period too!
Craig
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.
Hi Monorail, I also started feeling sick in August 2017. Unfortunately I didn't get a diagnosis until September 2018 so 13 mos later!
I am on the recover road but not fully recovered. At the moment my dodgy spells last about a day at a time. Lucky you only having a few mins per day where you notice yourself dipping. In the past week for instance I have had one good day then one bad day etc.
May I ask what sort of workouts are you doing at the moment? Because for 13 mos I didn't know what was wrong with me, I had carried on running or going gym for most of that, not realising I was adding to the problem. At the moment, I am only doing walking and yoga. I am capable of doing more but scared to as I don't want to over exert myself and causing a major crash.
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.
craig your words have meant so much to me during this illness. i am holding on but i am getting tired. i have pushed myself for a long time. my new doctor didn't give me much hope for a return to a normal life. there was so much i still wanted to do. you have touched many lives on this site. God is pleased with your work to help others. you have a great reward coming to you. i hope your situation is getting better.
Thanks Craig, appreciate you. I try to give thanks often for the times when I feel perfect and healthy, I give a little word of gratitude. I think thats important. My overall strength level is approximately where it was before I started getting sick, I just cant go at that level for longer periods or I risk feeling overtaxed. I really believe overtraining played a decent role in me opening myself up to illness. Im learning to be active in a healthier more sustainable way. People who knew how much I climbed before used to marvel at how much I could go and not get injured. Ive learned to be a little more considerate of my body's need for down time now.
Hope you overcome your own health challenges. Youre a oretty extraordinary guy for offering people comfort for all these years, hopefully those good actions bring you blessings in some form. Happy Christmas season.
Hi there,
thats rough not knowing for so long what might be wrong. That was one of the worst things in my experience, going three months without a definitive answer. I essentially diagnosed myself too based on my symptoms, and pretty much demanded the doctor test me for mono, though she didnt think its what was wrong. Lets see, for me Ive had a sort of mild case that has just persisted a long time. I only missed one week straight of work at the beginning and called out here and there in the next few months so I feel lucky compared to some things Ive read here. But as far as working out, I am actually employeed as a rock climbing instructor, I teach at a bouldering gym. I have climbed pretty much throughout having mono, probably to my detriment in the early stages. Im pretty advanced as a climber, and fortunately with climbing there are many different difficulty levels, so when I would feel not great I could just dial things back to easier levels. I think what youre doing, gentle yoga and the like, is probably a better choice for you, climbing is just such a love of mine I felt I had to keep it up in some form.
I have played a little with some qigong practice, I had heard a personal testimony of it helping someone come out of a chronic fatigue state. There are extremely gentle forms of qigong movement, like simple arm movements that really helped me feel more balanced energy. Maybe look into that.
I believe you'll get better from this, keep believing and give thanks on the days you feel good. That helps me a lot. Best wishes.