In Which I Explain and Complain a Lot

There have been a number of questions friends have been asking that haven’t gotten answered, so here goes, in no particular order:

  • Disability: I have appealed my Disability rejection to the highest level in Social Security, about two months ago. They can take a long, long, time to rule on things, apparently – up to 16 months!!! Not making me very happy to just hang in the wind, waiting. But not much I can do about it.
  • XMRV: Yes, I tested XMRV Positive.  What am I gonna do about it? For now, nothing. Because the science is in it’s infancy where this is concerned, and ARV’s (Anti-Retrovirals) are not simple meds to be messed with unless you absolutely have to mess with them. And, because we’re giving the Valcyte a chance right now – we want to be very sure what med causes what response in me. Recently, we got a piece of good news – the first study, ever, that not only confirmed XMRV exists (scientists are fighting about this), but that there is a definite link to CFS.  This comes courtesy the WPI, whom I’m asking all of you to vote for on Facebook as part of the Chase Community Giving program. They won $25,000 in the first round. Now they – the only organization working directly on Neuro-Immune Disease – are in the running for up to $500,000 in a grant in round two. If you haven’t voted for them yet, please do – and fast! Voting is only open one week. And just because you voted for them a couple weeks ago doesn’t mean you don’t need to vote again – it’s even more important that you vote in round 2 as there’s more money at stake. If a cure is gonna come, it’s gonna come from them! So, Go Vote!
  • Valcyte: As noted above, we’re giving this a chance to work, and it is definitely working. At least, I’m seeing cognitive improvement, and sometimes I think there’s a wee little bit less overwhelming exhaustion. Sometimes. But the cognitive improvement is what is expected to come first. It takes 3 – 6 months for the majority of the improvement, and I’ve now been on it 3 months. However, there is a problem: my platelet count is dropping and is low, but not low enough that I have to stop the Valcyte. Yet. I’m finding that very depressing. It’s as if I’ve been in a dark place a long time, and someone has opened the shades… I want to see more, interact more with life, with friends, to write, to be at least a little bit more ME. And I don’t want to give that up. But I will have to, if the platelets continue to drop. At which point we’ll let my body recover a bit, and then start on ARV’s.
  • Neurologist Appointment Report: My neurologist has really changed in her attitude toward me since I told her I was struggling to get on Disability. She not only volunteered to write a letter, she wrote one that night (about 2 months ago) and I was able to pick it up immediately. She seems much more interested in me as a patient, listens more, asks many more questions, spends more time examining me. She ordered a MRI of my cervical spine (my neck), the day I tore my rotator cuff. I put it off a few weeks while that healed up a little, then had it done. Basically, it says there’s some degenerative disc issues, arthritis, but nothing that would be an obvious cause of the migraines & chronic daily headaches. We’re increasing my Lyrica and hoping that might help, since not much else has helped.

Then there’s the complaining part of this post…

I’m tired. Really tired. We’ve gotten about 6″ of rain this week as band after band of storms have come through. This has made me have a migraine pretty much everyday this week. Including  today. I took a fioricet when I started seeing twinkling lights in my peripheral vision.

I’m cranky. Depressed. Frustrated. Part of it likely PMS – that’s likely also part of the migraine issue.

I’m worried about my platelets dropping and the possibility of having to stop the Valcyte. I don’t want to go back to where I was 3 months ago.

I’m frustrated with my house, the complete & total disastrous mess that really, only Rhia & I can deal with, since it’s our crap everywhere. I want to clean it. I just don’t feel like cleaning it. I have piles of clothes to sort through, stuff that doesn’t fit anymore, I’ve lost so much weight.

I’m frustrated with the slow healing of my shoulder. Twice I’ve intensified the hurt – once while camping, picking up something too heavy as we hurriedly threw stuff in the car in the rain. Then there was the “dog incident.” Someone came to the door, I had been asleep, Kasha was barking furiously, on my left, and without thinking I grabbed her collar & opened the door – and she lunged until I told her no. Kasha weighs117#. Or, she did until the Kleenex & cat litter eating incidents.

My neurologist was surprisingly concerned about my shoulder & the way my ortho blew me off. “How do they know how bad it is if they didn’t do an MRI?” she asked. Good question. If they are guessing based on how much I use it, are they factoring in the fact I’m on pain meds? And doing more than I would, otherwise? Dunno. Will ask my PCP in June – annual physical time.

*sigh*

Did I mention I’m cranky, depressed, frustrated, and courting a migraine again? That about sums it up.

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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.

Ash’s Advice: Part One of Many To Come

Recently, friends have suggested that though I may be sick in body, I’m still a good writer, and that maybe through my writing I could find a way to help other people, especially other women, who are going through the trials and tribulations of chronic illness, whether it’s called:

  • Chronic Fatigue Syndrome (CFS)
  • Myalgic Encephalomyelitis (ME)
  • CFS/ME or ME/CFS
  • Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS)
  • Fibromyalgia Syndrome (FMS)
  • “chronic Lyme”
  • Virus Induced CNS Dysfunction (VICD)
  • or… the list goes on!

Not all of these are exactly the same thing, but many of us out here receive a diagnosis of at least two of these, if not more!

And there are all the things that go along with the above:

  • Neurally Mediated Hypotension (NMH) which is also called
  • POTS (Postural Orthostatic Tachycardia Syndrome
  • Adrenal Stress Syndrome
  • Reactivated EBV (Epstein-Barr Syndrome), or HHV-pick a number (Human Herpes Virus, of which there are quite a few varieties)
  • XMRV (Xenotropic Murine-Leukemia Related Virus) – the new retrovirus that seems to play a part (or not, depending on who you believe)

It’s not bad enough that you get really sick, you’re exhausted constantly, in pain pretty much all the time, and suffer from cognitive impairment (“brain fog”), but you have to learn all this new medical lingo, while suffering from short-term memory loss, and become your own Patient Advocate!

A Patient Advocate is someone who represents the patient, goes to doctor visits, keeps track of meds & their side effects, tracks test results, tracks down new doctors and investigates new treatments, studies the latest developments and passes this information on to doctors, arranges for tests and appointments, keeps lists of symptoms, etc. An excellent discussion of what a Patient Advocate does is at the CFS Patient Advocate’s Blog.

But most people will not have a Patient Advocate – they will have to learn the lessons the hard way.

There are many websites out there that give good information on what CFS, etc. is, though, really, that is a constantly changing thing, as scientists are learning new things all the time. And the shear number of sites can be overwhelming – especially since many of them are really supplement companies trying to peddle some herb or other nutritional supplement which they claim will cure your illness.

So, I decided to start a series of posts in a new category: “Ash’s Advice,” which is not an attempt to replace the many comprehensive, medically related, websites, but to pass on some of the often hard-learned lessons of being a patient with any of these illnesses.  I’m going to try to keep these posts short, since 1.) It really makes my back hurt to use the computer, and 2.) If you’re a patient, dealing with cognitive & memory issues as I am, info needs to be short and to the point.

Topics I hope to get to will include:

  • The importance of finding a good doctor, and how to find one. And what makes one good and another merely sufficient.
  • Dealing with your doctors
  • Lab tests you should insist upon – and what to do if your doctor disagrees
  • Learning the lingo
  • The Best Sites for Info on different topics
  • The usefulness of blogging & Facebook
  • Helping your family & friends understand
  • And lots of other things that don’t come to my currently mostly-blank mind.

And that’s the end of part one!