Sunday, December 20, 2009

Patience and Renewed Hope

This illness requires one to have an enormous and ceaseless amount of patience.

Late this past summer, I had a brief period where my CFS (though still obviously extremely severe) seemed relatively stable. My cognition was slightly better and I could spend a bit more time online -- allowing me to start a blog and (very slowly and with help) create a short video testimony for the CFSAC meeting in October. I still had to be careful, of course, but as long as I stayed within my "energy envelope," I did not have any major setbacks.

However, towards the end of September, I had a significant downfall following a series of tiny slips that apparently fell beyond that invisible line of overdoing. Three months later, I still have not been able to bounce back. Every time I think there's hope that the crash is slightly lifting, it comes back full force again. Needless to say, my health has been quite poor of late.

So, for that reason, I may not update my blog for quite some time in an effort to enforce rest upon myself. How long this will be I don't yet know. I am confident I will be back at some point, though, and hopefully sooner than expected.

However, before I briefly disappear, I do have some test results to share. I debated for a bit on whether to post about this, but my point in starting this blog was to help raise awareness, and I feel like I'd be holding back on something important if I did not include this news. So.... I recently found out I am positive for active infection (DNA PCR and culture) with XMRV.

There are a mix of emotions with this news. I've been positive for many things at various times since becoming ill -- HHV6, EBV, CMV, Lyme disease, RNase L dysregulation, low NK cell activity and so on. But this felt different. I suppose because this IS different. It is a newly discovered human retrovirus whose implications are not yet fully known, and a virus that has apparently embedded itself into my very DNA. And yet, to be honest, a large part of me is relieved. I think I'd have been far more disappointed had I found out I was negative. At least this way I feel I have an answer; it is a missing piece of the puzzle, and perhaps the biggest piece at that. Most importantly, it gives me a sense of renewed hope. Hope for treatment, hope for better understanding and, maybe even someday sooner than any of us anticipated, hope for a cure.

In the meantime, in the spirit of the holidays, I thought I'd share a photo of me taken 13 years ago on Christmas Eve 1996, exactly one week before I fell suddenly ill. Despite it being the anniversary of my illness onset, this new year brings with it renewed optimism. May 2010 bring each of us ever closer to better health and the fulfillment of our dreams.

Best wishes to all for a happy holiday season!


18 comments:

  1. Laurel I read your post with mixed emotions.
    I am sorry that your crash has still not lifted.
    I appreciate the effort you have made to write this post in your current state.
    You are the first person I have heard of that has XMRV as well as Lyme and I will not be surprised if you are the first of many, not everyone but I suspect a significant number. particularly perhaps the ones who are the sickest and don't respond as well to just antibiotics. I know many Lyme Doctors treat a combination of antibiotics and antivirals due to other viral infections patients have. In fact the daughter of a friend had ME/CFS bedridden for 9 years and was diagnosed with Lyme after antivirals and antibiotics she recovered and has been living in France skiing, working in a bar and partying into the night this will be her third season she is also doing Open University to make up for the lost years of education. What a success story.
    I hope you too will find someone who can treat you on the right cocktail of medication to improve your health.
    Have a peaceful Christmas and I hope you soon start to pick up again.

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  2. Oh Laurel
    I read this with sadness for you...and selfishly for me too as I always learn something from your writings. You have such courage and wisdom and I really hope and pray that your strength returns steady and sure.
    Sorry to hear you tested positive for XMRV. I hope though that it means better health in the future when they know how to treat this and other illnesses such such as CMV, etc.
    Please know that you will be missed. You will remain in my thoughts and prayers.
    Renee

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  3. Be as well as you can be. I'm cautiously hopeful too.

    best,
    Priscilla

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  4. Laurel,

    I think you're making the right decision to forego blogging for now in favor of working on your health. Your blog will be here whenever you chose to write (as opposed to your doing it out of obligation) and we'll all be here ready to read it when you're ready.

    Take care of yourself. I hope the new year brings you good news about possible treatments for XMRV.

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  5. Hey Laurel,

    I just want you to know that I also have lyme and XMRV (per VIPdx). I have high hopes for you within as soon as a 1-yr time period. I hope you keep on with your current treatments, granted you're working with a competent practitioner. They will get your body's internal detox functioning and also lower the metal/toxin burden in preparation for whatever treatment you eventually do for XMRV.

    I responded to your comment on my blog, but just in case you missed it--binders binders binders!!!

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  6. Laurel, I've seen your video and I realize how very sick you are. Since you are XMRV-positive, I sincerely hope that XMRV will be the primary cause of your illness and that it will be successfully treated and you will be well again. I'm rooting for you.

    Myrtie

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  7. Testing positive for XMRV is a good thing, I think.

    It's not like finding out you're HIV-positive, where you suddenly have to cope with the knowledge that you will become sick even though you feel perfectly healthy right now. You're already sick. You already know that you're sick. Knowing more about why can only help.

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  8. I think this is bad news with a silver lining. I fully expect to be hearing similar test results from the CFS blogging community in the next year or so. You are the first of my acquaintance. I am inspired to find a way of getting tested.

    I wish you all the best and hope you find some recovery in this rest period.

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  9. Hey Laurel. I'm really sorry that you have gone down hill. As a fellow sufferer and now your cyber friend, I feel your disappointment.

    I don't know what to say about the XMRV. As you said hopefully this is a good thing and it will lead the way to more answers.

    You are lovely in your picture!

    Looking forward to having you back online when you're feeling stronger and you will be in my thoughts until then.

    Wishing you a Happy Christmas and a hopeful 2010!!

    Sending you a BIG Treya hug. xxx

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  10. I agree with Toni and think you are making the right decision. I also very much appreciate that you took the time (and energy) to let us know you won't be posting for awhile.

    Thank you also for sharing the news about xmrv. I agree with what Jo said about this being difficult news with a silver lining. I think there will be treatments for this.

    I wish you much health and peace in the New Year...

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  11. Hi Laurel,
    I'll keep it short since I know you are carefully monitoring your computer time. Warm wishes for a healthier New Year. May you slowly get back to where you were.

    BTW - I haven't tested with VIP because Medicare doesn't always pay. I'm waiting to see if I make progress with the neural therapy and chelation.

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  12. Alison, You are an inspiration to all of us as you listen to your body and take the hiatus from blogging which it is calling for. The cognitive exertion it takes to write a post and read and comment on blogs is immense.

    I will miss your writing during your hiatus and will look forward to when you are feeling strong enough to write again.

    Sending warm, healing thoughts your way Alison...

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  13. Hi Laurel,

    Thank you for sharing. I'm sorry to hear of your decline. I wish you better health in 2010 (and beyond, of course).

    On a side note, my doctor thinks there is a good possibility that HIV antiretroviral medications will be effective against XMRV. She is going to have me tested as soon as the test becomes commercially available and insurance companies cover the test.

    Take care of yourself!

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  14. Thanks to everyone for such supportive and caring comments. It is so appreciated!

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  15. I'm adding you to my links. I hope the crash lifts soon. I'm in a borderline one and do realize how hard it is waiting it out.

    Knowing you have the retrovirus means that if something does come down the pike you're a candidate! I'm still debating whether to get tested for it now or later.

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  16. Hi Laurel, Want to thank you for visiting my blog and congratulating me on becoming a Grandma. I know you are going through a real rough time physically...and it meant a lot. Thinking of you, Kerry

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  17. As surely many others do, I cry as I read this entry. I also have both ME and Lyme (ME for many years then caught Lyme and relapsed severely). I relate to your words so much, and despite this disease, your intelligent way of expressing yourself always shines through. I suspect I'll be XMRV positive as well, because of my classic-M.E. onset.

    And just as it was during my Lyme diagnosis, I understand what you mean by a large portion of you being so -happy- to know that there is something there, something that can give you a direction to follow, a treatment path to pursue... Hope! A new spark amongst dwindling embers.

    The most heartbreaking thing to read was your relapse. The "invisible line of overdoing" is such a perfect expression for what we go through, and is something I've been battling for several months as well: A steady decline, then for once an improvement...but then another decline. For those precious moments we are oh-so-cautious about our small, newlyfound "freedom"... And the disappointment that we go through once we realize that we've been fooled, allowed to believe that what we were doing was safe even though our bodies were actually borrowing "spoons" from our future spoon-bank without even TELLING us...! A part of us always blames ourselves, even if there was no way we could have known.

    We are so strong (survivors!) for keeping up this fight!

    I wish you continued access to that endless pool of patience we've been blessed with, so that you can improve enough to at least reach stability once more. <3

    Make sure someone keeps you updated on the newest XMRV research! :)

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  18. Hello Laurel....I know exactly what you mean about it being (kindof) good news to test positive to something. All the time I've been sick I've wanted to at least know what it is that's causing me to be so sick.

    I hope with this XMRV virus reasearch come answers and treatment. I hope to be tested soon.

    I'm so sorry to hear that you were in a down spiral around Christmas, but I hope you are feeling better? or start to feel better soon.

    Hang in there
    Take care

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