Going into this madness of Lyme disease I found myself let down a lot from the roller coaster ride of it all. So many ups and so many downs. It felt like some challenge was always infront of me, always a mounting list of troubles. I found myself not being able to notice subtle improvements because they were just that... Subtle. Healing with Lyme & co infections is like watching a flower blossom; if you watch it for hours you will never see it change. But if you see it before & after side by side you notice the growth.
Now that I'm about a year in of just solid treatment, I have been able to look back quite a bit from where I came from. I am able to see I AM better. My bad days now are actually better then what my good days used to be a year ago. When I crash now I don't crash as hard, and I can pick myself up quicker. Some symptoms spend longer times gone in between flares & others have gotten less intense. I feel so unbelievably lucky to have been able to see improvement. Being able to reflect & see this just shows me that I can get there, and to never lose hope. And that I can't give up, because I still have a way to go.
The CD-57 level marker is a marker that a lot of LLMD's look at for Lyme disease because it is specific to Borrelia. CD-57 levels can show if there is an impact on certain natural killer cells in the body. CD-57 levels can indicate how active an infection is, and can often be a marker to show if treatment is working and how likely someone is to relapse.
If CD-57 levels are low it means that these NK cells are being used up by the immune system to fight Lyme. Some doctors, like mine, will keep an eye on this level to monitor things. It's not always helpful for all patients, some with chronic Lyme have higher or fluctuating levels, especially if they got tested while on antibiotics etc. But they are the small minority. For me when I diagnosed I tested quite low (I believe around 16), so my doctor knew it would be something which would correlate as I progressed.
CD-57 levels are measured like this:
Below 60 is chronic Lyme stage. The lower the number the more active/worse it is.
60-100 is considered "normal" but still at risk.
Above 100 is normal & ideal. I believe up to 300.
*Many LLMD's say if you complete treatment & your levels are still below 60 you are considered more at risk to relapse.
You can access a link to a study done on the low CD57 levels in Chronic Lyme here.
Okay, so my levels were crazy low to begin with. And I felt pretty crummy to match. After a year, not only do I feel better, but my levels have gone up to 45! That's still low, and it's not where I need to be, but honestly to see an improvement at all in clinical & statistical way is amazing. And it's something I had to look back a year to appreciate. I had to have the patience to see what I'm grateful for.
You can check your CD-57 levels through your Doctor, or you can do it yourself with an "at home" test that you can get here. You simply go to a lab for the blood draw and they send it off for you. It's pretty fast and if you are curious this makes it possible without going through the hoops of an extra Doctors visit.
This journey is long, and it's hard fought. But you can not give up. Not a week in, not a few months in, not even a few years in. It's easy to be consumed by the pain & have that blind your hope. Trust me, I hit my lowest point where I genuinely didn't know if I would make it every day. It was terrifying, and a place no one should ever go. But I want to stress that point greatly because if I can make it & keep fighting & improve, then so can anyone else. I've been at every stage of frustration; from lack of diagnosis, to uncertainty about treatment, to pain from Herxes, & wavering hope in progress. I can only say that if you have hit your lowest point then reach deep down and remind yourself that from here it WILL get better. You will prevail. You have to fully believe that, and take each day as it comes.
I wanted to post an update on my CD57 levels since this post was originally written in 2013. Since then moved up to 75 in Spring of 2014, and as of now in Spring of 2016 its at 124. I hope this can be encouraging from anyone struggling to raise their levels up.