Health & ME/CFS

That Sinking Feeling

It’s mildly ironic – yesterday I blogged about my meds and my occasional dismay with my personal pharmacy.

I just got the word we’ve all been anxiously awaiting, and it means a decision on more meds.

Yes, you might have guessed it.

XMRV  Positive.

(click  for more info on the test)

The viral load was too low to be detected with current labs, ie. I was negative in culture for the virus, technically, because they couldn’t get it to grow in culture. But I was positive for antibodies to XMRV, and you only make antibodies if you’ve been infected. And XMRV is a retrovirus – it writes itself into your DNA. Once it’s there, it moves through your cells, sets up shop, and stays there the rest of your life. You can take meds to reduce the amount of active virus, but you can not get rid of it.

XMRV Positive.

Where did it come from? How did I get it?

We’ll get to that. I’m sorting out my feelings about this as I write. This is train of thought writing.

And my first thought is… Rhiannon.

My second thought is… Terra.

Because I was first told I had CFS before Rhiannon was born. So if I picked up the XMRV sometime in the 10 years between my children’s births, then Terra is safe. But Rhiannon, she could have it. Or she might not have it.  If she does, the most likely scenario would be that I passed it to her during breastfeeding. And I breastfed her longer than most anyone I know, because it was the right thing to do, the healthiest and most natural way to feed my baby.

Except maybe it wasn’t.

Obviously, our next step is to get Rhiannon tested. She’s been acutely aware of the significance this whole thing holds for her future and her childrens future. There is a new test coming out, in June I think, that is supposed to be faster. Better. More accurate. It will be a long wait but think it would be best to wait until then.

Terra might be safe. But I cannot say.

Currently, the leading minds in XMRV research are saying it’s most likely it came into the human population through vaccines. Viruses are “passaged” through different animal species before being made into vaccines. At the time vaccine research started, it was well known that the animals being used carried retroviruses, but it wasn’t considered that they could “recombine” and infect humans.  For more on this, please read Dr Jamie Deckoff-Jones blog post “Science Fiction or Science Fact.”   Dr. Deckoff-Jones is well positioned to know what’s going on – she was a healthy, active doctor, until a tick brought her down with Lyme, then CFS developed. And her daughter, Ali, is 19, and is also afflicted with chronic Lyme & CFS. They are both XMRV Positive.

The most common scenario with CFS patients, most of whom will turn out to be XMRV positive when tested, is a trigger event, something that set in motion a chain of events in the body. In my case, take your pick: a serious fall that nearly broke my neck from an incompetent Kung Fu instructor, that sent me into 6 months of horrible headaches and more fatigue than was normal, followed by a few years when I pushed through it, got married & had a baby, then had a terrible, scary, traumatic divorce coupled with severe sleep deprivation, that brought on full-blown CFS. And somewhere in there was the tick bite that gave me chronic Lyme.

But the simple  fact the majority of people who develop CFS/FMS are around my age, some exactly the same age (I don’t know that many – what are the odds of that?), seems to indicate it was probably a vaccine given to us as children. And many of us have children who have developed CFS, just as I do.

So maybe it’s been lurking in my body since I was a kid. Waiting for something to set it off.   Waiting for something to knock my immune system down long enough, and working in concert with the other viruses – or maybe that’s just how it works: we (CFS patients) virtually all have incredibly elevated levels of EBV & HHV 1 – 7 antibodies – it’s been proposed that XMRV turns off the immune system in such a way as to allow reactivation of these viruses, which our bodies then have to fight, triggering the CFS/FMS.

There are a lot of unknowns. (wow, took me a long time to figure out how to spell “unknown”. These spelling issues are coming up more and more often)

There’s just this sinking feeling inside.

I knew it was going to come back positive. But knowing intellectually is very different from knowing in your gut.

At first, when the news of XMRV surfaced, I was hopeful – hopeful I’d be positive, ’cause then I could jump on to ARV’s (antiretrovirals) and I might get better. But it looks like the ARV’s that work for HIV are not as effective against XMRV. Luckily, I have an outstanding doctor who’s willing to put me on ARV’s, and Dr. Deckoff-Jones and others have gone ahead and started on ARV’s, so we have some idea of which ones work the best. And I take hope from the fact that she’s been able to start working part-time as a good sign.

But there’s just this sinking feeling inside.

Because it could have been lurking in my body since I was a child.  Because  I could have passed it on to my children.

If I have, I hope you both know how sorry and how horrible that makes me feel.

A mother’s nightmare. To inadvertantly pass on an illness to her children.

But there is hope. It’s being studied. There are tests. There are treatments.

Holding on to hope.

And going out to watch the trees sway in the breeze, to sit in peace & quiet, listen to birdsong, pet the dog, watch the wild things.

And remember that I am but one tiny part of this great planet we call home.

6 thoughts on “That Sinking Feeling”

    1. Oh, Shelley, I wish you could sit here under the trees and we could talk. I know exactly how you feel, exactly what you mean, and completely understand. I’ll FB message you – I’m so sorry… *big hugs*


    1. Thank you, Daphna! I had such a good time when you were here – well, in between the migraines. Sorry about that! But I’ll really treasure our talk by the creek… just like old times! Much love back to you!


  1. Hi Ash,

    I’m sorry your gut was right. I understand how you feel about passing it on. I breast fed too. Before CFS, which I suspect my son has, I became aware that because I have a certain blood type, A RH negative (I think is how you say it) and my son has type B, well, they had to give me a shot so I would live after giving birth. Apparently, this shot means he was a lot more susceptible to getting schizophrenia. Then too the virus I had, which is why I had to have a C-sect could be related to that also. Now this you know.

    I guess we shouldn’t blame ourselves. We certainly had no way of knowing these things. Those darn vaccines. That is one thing I’ve always had a gut feeling about!

    I don’t know what to say. I sure am glad you have good doctors. I still need to look at that good doc list. I’ll have to go on fb to do that.

    The past several days have been hard. My son went into a hospital recovery center for a few days. It is only temporary but I hope he might get into the long term unit. Only 3 months now but that would be very good for him and give me a break.

    We love our children. You do such a good job at trying to do all you can for your health. I hope the days ahead bring you peace my friend. People live a long time with HIV so maybe they can help you. I dread getting the test myself. I know that feeling too.

    Take care and let’s talk soon.
    Your friend,
    dogkisses and lots of them for you today!!! xoxoxoxoxoxoxo (the hugs are from me).


    1. Hi Michelle – I’m so sorry your son is having so many problems! But maybe you getting a break is the best thing right now. You have so much going on, healthwise, I don’t know how you manage it all. I do hope you’ll look at the good doctor list – it really can be a life saving thing, to find a doctor willing to take the time to sit down & really listen, and take on a challenging case. I have a post coming of Ash’s Advice all about doctors.
      Many hugs & thanks!


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