For 8.5 years, though my illness developed and progressed, one positive thing was that it seemed as if I rarely caught colds, flus or other virus’. Sometimes, everyone in the family would catch a bad cold and I would come down with a bit of it, but it was gone within a day or two.
Things seemed to change in December. I began catching bug after bug. I haven’t even shared much about my trip to Miami because I have been so constantly sick this year.
Though, I’d still like to share about my trip, more importantly, I’d like to share about what I learned. I know so many of my friends and readers want to understand, and I know I have quite a few readers who are, themselves, facing this difficult illness.
After 9 years, I have finally found someone who can define and help me understand what is happening in my body.
Measuring Natural Killer cells (NK cells) can tell how well an immune system is working. It turns out mine is working below the 10% mark.
“So boost your immune system with…..” you might be thinking. But it’s not that easy of an answer.
To put it in the simple laymen’s terms that I understand, when a virus comes along, the immune system sends out cells that attach to the virus, build a bridge, and shoot “stuff” to kill the virus cell off. During that process, something called cytokines are released. These are the things that make us fell crummy when we’re sick. (I’ll get back to cytokines in a minute)
Well.. at this point in time, my immune system’s “ON” button is pushed, but the off button is not working. There are two reasons for that.
First, the “stuff” or ammunition that the NK cells use to kill virus cells is depleted in my immune system. So my immune system is hard at work, with nothing to work with.
(When we think of “boosting the immune system” we are referring to things that will stimulate the immune system to produce the cells that fight virus’. I am not low in these cells, I am low in ammunition.)
Secondly, I have a virus that has been reactivated. It’s called HHV-6 and most everyone has had it at some time in their life and everyone has anitbodies to it. But, for some unexplained reason (which researchers are desperately trying to figure out) in people with M.E./CFS, this and several other common virus’ become reactivated. So, my immune system is in constant battle with this reactivated virus.
So with an immune system on high alert you can see why, for so many years, a cold either passed me by or only lasted a day. But now, it is so depleted that, even in high alert, I am catching every bug that comes near.
Thankfully, though, my immune system has not yet quit trying. It could come to that point, but it hasn’t yet, and that makes it much easier to try to work with it.
Another other thing I learned was that my cytokines… the things that make you “feel” sick, are very typical of an M.E./CFS patient. Mine showed that I clearly do not have an autoimmune disease. And the inflammation that my cytokines indicated, perfectly reflected my symptoms.
One more interesting tidbit. My Vit D levels were extremely low. I know, all of you who live in the Pacific NW with me are laughing. But in addition to our lack of sunshine, it is common for those with M.E./CFS to be low in Vit D (I don’t know why). So I have been given a prescription strength Vit D. I wish it would also bring a nice glow to my skin as if I’d really been in the sun (hee hee). I guess I really do need to win that trip to Hawaii!!! (PS: Scroll down a few posts, and you’ll see that you can still “LIKE” my entry and tweet it for me too)
So many of us feel so ignored, and put down by the medical community. In the past, it has been believed that there was no way to really measure M.E./CFS, but clearly, there are some great doctors out there with straight forward measurements that can define this illness. This realization brought tears to my eyes. I can’t tell you how it felt to hold in my hands, scientific data that defined my symptoms.
So, I’m sure you’re wondering what I am doing about all this. Well… that’s also not an easy answer. But to begin with, I am trying some treatments that should reduce some of the inflammation in my systems and try to refuel the ammunition in my immune system. The treatment for the inflammation should help with my sleep issues, pain and cognitive struggles.
These treatments must be ramped up slowly and can take many months to see the full effects. I started the treatment for the immune system just 2 days ago. About 12 hours after my first dose, I had shivers, fever, sore throat and now a cough. I don’t know whether this is just another bug I’ve caught (I haven’t even left the house in over 7 days) or if it is what is known as a “herx” reaction.
A Herxeimer reaction is more typical with antibacterial treatment for long term bacterial infections. But patients in recent trials of anti-virals with severe virus reactivation have also described a herx reaction. So, it is possible my current symptoms are a herx instead of catching something new.
I will be on these treatments for 6 months. Then my immune system will be rechecked and if needed, we will consider bringing in stronger anti-viral meds. Meanwhile, I patiently wait and hope to see some improvement over the coming months.
I appreciate how much all of you have supported me and to all of you who are cyber friends visiting my blog, thank you for sticking with me, even in my very ill days when my blogging lags. Hopefully, I can pick up soon and have some fun and informative blog posts for you.
Filed under: Health | Tagged: CFS, Health, M.E./CFS | 1 Comment »
