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
jen83382 lisa29739
Posted
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.
lisa29739 jen83382
Posted
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!
craig07920 jen83382
Posted
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
MonorailNick lisa29739
Posted
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.
lisa29739 MonorailNick
Posted
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!
craig07920 MonorailNick
Posted
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
kaymono MonorailNick
Posted
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.
MonorailNick craig07920
Posted
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.
MonorailNick kaymono
Posted
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.
craig07920 MonorailNick
Posted
Hey Nick,
Oh thanks so much for your kind words too, really it's been a therapy for me to come onto the site and to chat to others, plus I've had the luxury of time to be able to do that when not working, so really it is very beneficial to me as much as anything, and I really appreciate your kind words regarding my own health challenges that means a lot really hoping for better times for us all!!
I totally get it Nick, when you've been such a fit person to a very high level, it is so hard to have to step back from that in any way, because it is so good for you mentally when you are able to do what you enjoy and what you love as well as keeping fit. It's good you have been able to get back to a decent level, still believing that you can get even further again and closer to where you were before and want to be in the future, so don't give up and hang in there.
Wishing you a great Christmas too and thanks again for all your support!
Craig
kaymono MonorailNick
Posted
Hi Nick,
I also had to demand the test at the doc. I had multiple tests done around the time the symptoms first started but unfortunately ebv was not one of the ones the doc tested for.
In September this year after being ill for 13 mos and after my sister suggested to me to check for ebv, I went to my doc and demanded it. The doc granted my wishes but he admitted after the results came back that he was shocked by the results, he did not expect it to show anything and only did it because I requested it. He also tested for cmv. Both of which showed past infection. He concluded that what I was experiencing was post viral symptoms and he could not say when I would fully recover as everyone is different - for some people it takes weeks, months or years. He said to me he could confirm that what I was going through was not in my head.
After hearing this though I was still feeling rubbish it was like a huge weight had been lifted off my shoulders as I now knew what I was dealing with.
For me, just having a positive mindset and practicing mindfulness daily does help. Gratitude is also important.
craig07920 lisa29739
Posted
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
lisa29739 craig07920
Posted
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 😃
craig07920 lisa29739
Posted
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
brent_83487 lisa29739
Posted
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.
craig07920 brent_83487
Posted
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
brent_83487 craig07920
Posted
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.
craig07920 brent_83487
Posted
Hi Brent,
You've always had such kind words for me and it really means a lot and touches me always, thanks so much Brent. Sometimes I feel like a hypocrit myself because I try to give supportive words to others but then when it comes to dealing with my own circumstances and situation it's been totally different and finding it hard to stay encouraged or keep on the right track, and I totally empathise with you feeling weary and tired Brent - it's the having to live through it constantly and the daily frustrations and challenges that makes it so hard, when all you desperately want to see is progress and things moving in the right direction. It's that drifting and feeling of things staying static which I've fallen into lately and finding it hard to motivate myself and keep the greater goal and perspective in mind.
Let's not give up Brent, even if today's not the best day or this whole period is not the best period, the future is going to be different and there is going to be change. And I empathise very much too with seeing doctors who just don't get it about how people are feeling mentally and emotionally as well as physically when going through something like you have been through, it frustrates me so much how many doctors are just disconnected and don't have the true care for their patients the way they should. That guy can't take your hope away though Brent, he just doesn't have the right to do that and I definitely believe that hope is alive and well in your situation and that you will get well again and do the things you want to do again in life Brent.
Thanks as always for all your support and grateful for your words of wisdom to me means a great deal!!
Craig
lisa29739 brent_83487
Posted
Hi Brent! Oh man- sounds like we both have had a similar path with this sickness. It makes me wonder if we got the tick bite and that triggered everything else.
2 years?? Geez. That's crazy. Did you have a recovery period ever? Month 3 I started to make huge improvements that lasted about 4 weeks. Then I attempted to exercise and I completely relapsed and ever since have been in this up and down pattern. Although the last 3 months have felt worse (aside from 9 good days about 4 weeks ago). It's so frustrating. I can't figure out a good pattern or eating habits or anything really to feel better. It all feels so random.
I'm sorry about your divorce. I can't imagine. My husband and I have a pretty rock solid relationship and we are even feeling strain over this. He doesn't understand why I can't just get better. And not having a firm diagnosis isn't making anything easier. I just have to keep reassuring both of us that it will eventually get better. Please keep updating us on your progress! I think you have been dealing with it the longest that I've seen. I truly hope your improvement continues and you can get back to living a full and healthy life!