Health & ME/CFS, This Crazy Life

Counting the Blessings of 2010

This Christmas Eve, I’m counting my blessings – these are the gifts I’ve received this year:

  • My mother became very ill, but is thankfully recovered from her two hospitalizations and surgery, and is getting her heart issues sorted out. I’d be lost without her, so I’m so glad she’s still around! And, in the process of her illness, I learned just how hard I can push myself… and just what the payback will be.
  • I have officially successfully quit taking methadone for pain (or anything else). It’s been a week since my last dose, and the withdrawal has mostly subsided. It was a rocky road, harder than I thought it would be, more uncomfortable, and certainly longer. I know some in my family have not supported the fact that my pain docs put me on opiates for pain control, but I don’t think you really understand the level of pain I live with. I do still take short acting opiate pain meds, though at a very low dose, and I could not function without them – I can’t stand up for more than 15 minutes without horrible back pain that wipes me out, and then there’s the knee from Hades & it’s pain, and the migraines, and the all over ache that drives me bonkers. They don’t last long enough, and I am never, ever, without pain.  The one and only reason I have discontinued the methadone was because of the discovery of the central sleep apnea, a discovery made just in the nick of time.
  • I managed to figure out what was causing the worst of my headaches in time to save myself from an aneurysm or stroke. I have truly never had anything as painful as those headaches were in my entire life, with exception of Rhiannon’s labor.
  • I came to the realization that I have Asperger’s Syndrome, and revealed that to my family and friends. And you were all more accepting and loving than I could have imagined. The realization has helped me a great deal, and I think I’ve grown as a person from looking at my life with the knowledge that I truly am different, and see things differently, than other people.

And finally, and most importantly, I’ve been reading, and studying, on some new medical and scientific breakthroughs that may have a huge impact on my life.

I have made a wish many times that the cause of my illness, whether you call it Chronic Fatigue Syndrome (CFS) or Fibromyalgia (FMS) or Post-Viral Syndrome, or Chronic Lyme, would be found, and a treatment figured out.

We just might be there.

Hopefully, you saw the ad in the Washington Post, or read an article in Time, Newsweek, or Wall Street Journal, about a newly discovered retrovirus, XMRV. (go read one if you haven’t) Maybe you read that CFS patients are now barred by the Red Cross & the US  FDA Blood Advisory Group from donating blood. Maybe you saw the article on Yahoo titled “Could XMRV Be the New AIDS?”

XMRV is found in several patient groups: primarily in patients with CFS, but also in cancer patients. It was first known in prostrate cancer, but has since been found in many other cancerous tissues, including in up to 25% of breast cancer tissue, as well as lymphomas, which is something that CFS patients have a higher incidence of.

This is a very big deal, because a retrovirus is something you cannot eradicate from the body – it writes itself into your DNA. And, disturbingly, researchers not only found it in CFS patients, they also found it in a small percentage of healthy people. We don’t know how it’s transmitted, but presumably in a fashion similiar to HIV, which is also a retrovirus. Blood, sexually, breast milk, and possibly other ways.

In the coming months, you are going to be hearing a lot about XMRV as some new research papers are in the pipeline, and it looks like they are going to say that not only is CFS contagious, in that it’s underlying cause is damage to the immune system from XMRV, but also that some cancers are contagious.

Right now, there is no test available  for XMRV that is paid for by insurance. Those are in the works, but it will be months, if not years. The only test is one designed by the folks who discovered XMRV, but it is available, and many CFS patients are having it done, and are testing positive, and some are starting trials of HIV drugs, some of which have been shown to be effective against XMRV.

Someday in the not terribly distant future there will be clinical trials, and believe me, I’m watching for them.

But the problem is, I’m on a very slippery slope, clawing to stop my downhill slide, but it’s not working so well. CFS is progressive… if you don’t recover in the first year or two, you are likely to die early from cancer. My sense is that if we don’t do something very, very soon, it will be too late. I am essentially bed-ridden now, and getting worse.

I can’t wait months & months or even years for a test that insurance covers. I can’t wait years for treatment with HIV meds, the anti-retrovirals that might stop my downhill slide. And I can’t get the HIV meds without a positive test to prove to insurance that I need them.

Luckily, I have been blessed with an absolutely amazing doctor who has been following the news about XMRV, who has stated that it’s almost certain I’ll test positive for it, and who has agreed to a.) sign the order for the test, &, b.) start me on meds if I test positive for XMRV. I will be a clinical trial of one. But certainly not the first CFS patient to try the HIV meds. And they seem to help many of us.

But we come to the problem: the test is expensive. And insurance doesn’t cover it. It is $549 for a dual test – one that tests for the retrovirus itself, that cultures it, and one that tests for antibodies to the retrovirus. You really need both.

It is my wish this Christmas that I can come up with the funds to pay for this test. I think it will change my life.

And I pray, with everything in my being, that Rhiannon can be tested, later, when we can get it covered by insurance, since she’s doing pretty well, and that it will be negative. She is not the only child of a person with CFS who also has CFS  – there are many, and most of them are around her age or a bit younger. Of the children of XMRV positive parents who have been tested for XMRV, pretty much all the children have it, too.

XMRV has placed a huge burden on Rhiannon. It is possible I  gave it to her during her birth or breastfeeding. And it’s a retrovirus… something we don’t know how to eradicate, ever. She’s worried for her future – will she wind up as sick as me? Will she be able to have children without passing it on to them, too? How is it transmitted?  She doesn’t want to give it to anyone accidentally.

I think, I hope, that I didn’t contract XMRV until after Terra was born, so I’m pretty sure she’s in the clear.

The discovery of XMRV is a very mixed blessing. It might mean treatment that could help me, let me live a bit more of a normal life – a life actually lived someplace other than my bed!  But if it also means increased chances of cancer, and the possibility that Rhiannon also has it… it’s horrifying.

But we have to find out.

5 thoughts on “Counting the Blessings of 2010”

  1. Hang in there darling, I am slowly learning what you go through. I wish I could do more and hope the tests and treatments go well for you. I really do enjoy our talks and notes to each other.

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  2. Christmas has come early, by an hour or two anyway, in the form of a call from the best mother in the world, who tells me she will pay for my XMRV test. Thank you isn’t enough to say, Mom. I love you, too.

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  3. I woke up this morning with a new feeling inside: HOPE. I didn’t know I’d lost it, but somewhere along the way, as months turned into years turned into more than a decade, and promises of treatments turned into failures – I can still remember the shock of hearing my LLMD telling me I’d “failed” the treatment for chronic Lyme, after a year with a PICC line on IV antibiotics – somewhere along the way, as I got progressively sicker, progressively more restricted, somewhere I lost that most essential of all things: HOPE, that it might one day get better, HOPE that one day I’d be able to do an ordinary thing like grocery shopping without worry, HOPE that I would live long enough to see my grandkids.
    My mother, who has picked me up & dusted me off more times than I can count, has done it again, with simple words of unconditional love & that a mother will do whatever is needed to help her daughter and if that meant paying for a test, that was a small price to pay.
    And that, the return of HOPE, is assuredly the greatest blessing of all I have received this year, perhaps for many years.
    I love you, too, Mom, and to my own daughters, Terra & Rhiannon, I hope you know that I would do anything for either of you, too, because a mother’s love is the greatest of all, and the most unconditional.
    (except for that provided by a good dog!)
    Merry Christmas, indeed!

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  4. girl, we need to find a better way to stay in touch with each other! i feel so selfish! wallowing in my petty problems, and you feeling as you do! i wish i could be there for you! i’m so very thankful for your mom. it is truly amazing how much our parents love us, even after all the crap we put them through. i think you’ve told me this before, but is there a better time than others when we could talk on the phone?

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