Alithea Athans

As I read more about autoimmune diseases, I find so many diseases that are intertwined. It’s fascinating how these diseases work and moreover how they work together to create more diseases. It is also exhausting and scary as I am not medically trained, it’s difficult to comprehend and make sense of it all. There is so much to learn about my specific disease, cold agglutinin disease (CAD), including how it branches off into other directions. And just when I think I have a great understanding another article is published, and I need to rethink it all.

From the beginning it was felt that my CAD was secondary and triggered by an unknown; this unknown is what I search for. My doctors have not found anything and have now leaned toward a primary cause. But what if it’s not? It frustrates me that you can go through life with a little bit of this and that along the way but no serious issues only to suddenly find out that something existed waiting for a trigger. So was this always going to happen eventually as I got older or was it an unknown trigger?

I read an article discussing mononucleosis and cold agglutinin disease. I remembered that when I was diagnosed, they had found that at some point I had mononucleosis and walking pneumonia, something I was unaware of. This was when it was believed that my CAD was secondary, and would eventually subside. That has not happened. 

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In recent news, it was discovered that Epstein-Barr virus (EBV) may be responsible for MS and now it’s being said, for CAD too. As I dig deeper, I have found that EBV stays with you indefinitely and can be triggered over and over. As far as we can tell, I have had CAD symptoms for many years, but it was left undiagnosed because my blood work always showed normal to borderline low range numbers. My body had been compensating all these years, but there are a couple of things that happened that may have triggered my CAD.  

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EBV has a few triggers that can reactivate the virus, which in turn can activate CAD. Two of which I have experienced in the past two years right before my diagnosis. One is the immense stress during the pandemic. I had gotten very sick and then a few months later diagnosed with CAD and the fear of catching COVID created a great deal of stress as I was now dealing with an autoimmune disease.  The other factor was menopause. It only makes sense that since it was discovered that I had mononucleosis at one point then perhaps one of these two reactivated EBV and triggered CAD. Yes, it is true that EBV is not the only way to get mono, but what if in my case it is? 

In a recent conversation with my hematologist, I was worried about the night sweats I was having but I did have full testing done to rule out cancers and other diseases. He felt it was due to menopause. Menopause? How long does this last? I thought being that I am postmenopausal meant it was over, but it turns out it has a median of about 4 years before you are completely done. 

I have been wondering if there was a correlation and I have found that EBV can be triggered by hormonal changes such as menopause. I started menopause two years ago and has since ended so I thought. So, what does this mean? If EBV can be reactivated with hormonal imbalances such as menopause would hormone therapy have prevented that CAD trigger? I honestly don’t know and won’t know until I have completed it.

 In the meantime, all I can do is stay warm, do my best to avoid stress, and hope that these were triggers all along. If they were, maybe my CAD will subside, or if nothing else my body will go back to safely compensating.

As I said in the beginning, it’s interesting and terrifying how diseases are intertwined. EBV seems to be the instigator of many diseases, not just CAD and MS but many more. It seems to me that if they can find a cure for EBV perhaps we can prevent the activation of these risk genes. Yes, there is no cure for EBV but there wasn’t one for polio either.