Dr. Peterson XMRV Testimony

Yesterday my doctor (the local one whom I consider to be my personal specalist, even though insurance won't cover him) was in Washington, D.C. to testify about XMRV before The Chronic Fatigue Syndrome Advisory Committee (CFSAC), the advisory board who provides recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Dept. of Health and Human Services! You can watch and listen to portions of his amazing testimony below or find out more information from the US Department of Health and Human Services.

For those new to my blog and wondering what I'm talking about, here are some quotes taken directly from the Whittemore Peterson Institute's website on XMRV:

The spectrum of neuro-immune diseases including: Myalgic Encephalomyelitis (ME/CFS), Atypical MS, Fibromyalgia and Gulf War Syndrome, share common abnormalities in the innate immune response which result in chronic immune activation and immune deficiency.

We have detected the retroviral infection XMRV is greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested. The current working hypothesis is that XMRV infection of B, T, NK and other cells of the innate immune response causes the chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections. (See XMRV paper in Science.)

This discovery opens an entire new avenue of Neuro-Immune Disease related research and our discovery has brought to this field world-renown immunologists and retrovirologists building our team of collaborators to translate our discoveries into new treatments as soon as possible.

Because retroviruses are known to cause inflammatory diseases, neurological disease immune deficiency and cancer the discovery of XMRV has far reaching implications for the prevention and treatment of not only lymphoma, one of the potentially devastating complications of ME/CFS but prostate cancer and perhaps many others.

3 year old funny

Rick called from Sam's Club to see if I needed him to pick up anything on his way home from work. Threw the question out to the kids, "Can anyone think of anything we need Daddy to get from Sam's?"

Little J. answers very matter-of-factly, "Monkey food, in case a monkey comes here in the next few days."

Hubby brought home a bunch of bananas for our Silly Little Monkey (who is dressing up as Ted, "The Man in the Yellow Hat" from Currious George for Nevada Day (Oct. 31). :D

Half Way on IVIG

Yesterday was IVIG #12. I've been taking Zertec daily for nearly 2 weeks now, and had Benadryl and Fluids before the infusion, oxygen during, and additional Benadryl 4 hours in. It went well with no significant reactions. (I had started getting the tight checst about 4 hours after first benadryl dose, even with the O2 tank turned up to a 6, so that's why the double benadryl.) I still was there for 5 hours, but the infusion room was quiet and peaceful (last week had been noisy and hectic and I came home exhausted just from all the stimulation!) so I rested and read and just sought peace in the stillness. I came home, took more benadryl, and slept peacefully.

Woke up sore and stiff today and have never shaken the pain and sore throat all day, but not feeling "hit by a truck" as I have many Mondays, just heavy and sluggish and foggy. I had a really hard cry, the kind that comes from deep grief and shakes your whole body, yesterday morning before church. It was so needed and felt cleansing. I was able to be honest with Rick about all the ugly things I'm feeling about this whole nasty illness and the frustrating process of trying to get better. We are thankful that we have medical approval to immediately move forward with our next 12 infusions, but it also feels like hitting a wall - I've been counting 12 weeks since day 1, then 12 weeks gets here and there's now still 12 weeks ahead.

I don't say it enough, but I want the world to know that I have been blessed with such an absolutely amazing husband and I thank God for Him daily - I certainly don't deserve him and I'm thankful that he knows and understands me so deeply. For those going through chronic illness alone or with a spouse who is not understanding or believing, my heart and prayers go out to you. The Lord is definately my strength, the answer to those questions people ask about "I don't know how you guys get through all this." But second to God, my husband is the most amazing support I could ever ask for. We have moment of frustration and no relationship is perfect, but I am blessed beyond measure!

We went to Chevey's for lunch between church and my infusion yesterday. Their chips and salsa are my ultimate "comfort food". After hardly being able to hold in tears all morning since 5:30, 3 bowls of salsa got enough endorphins going that I wasn't teary again until late this afternoon. I also had a lot of time to pray and reflect during the quiet hours of infusion yesterday and being still before God, getting my head and heart back into His Word, has probably been the most healing of all.

What's In A Smile

I subscribe to daily encouragement emails from Rest Ministries. I didn't write this one, but reading Fiona Burrows' words sure felt like they could have come from my pen. Rather than trying to recapture the concepts in my own words, I forward her thoughts along to share my heart. The following is reprinted with permission of Rest Ministries, Inc. in accordance with their reprint guidelines; do not reprint without permission.

Though the fig tree does not bud and there are no grapes on the vines, though the olive crop fails and the fields produce no food, though there are no sheep in the pen and no cattle in the stalls, yet I will rejoice in the LORD, I will be joyful in God my Savior. The Sovereign LORD is my strength." (Habakkuk 3:17-19 NIV)

People often comment about my smile. I seem to smile a lot and that's often what people notice most about me. A lady I met when travelling some years ago, said she thought I smiled so much, I must even smile in my sleep!

Smiling seems to come naturally to me, but I know too, that I sometimes smile because I am nervous, insecure, or even if I can't remember someone's name. So sometimes its like a mask.

When people find out that I live with chronic pain, they sometimes say about how they never guessed because they see me smiling. Some people even ask how I can smile when I am putting up with such pain. They say I don't look like I'm in pain.

Whilst I might continue to smile, there are many days when I don't feel I have much to smile about. Things I can't do anymore, things that just seem so difficult. There may be lots of things going on in my life that would make me feel I don't want to smile – but I still have an overwhelming reason to smile.

God gives me a reason to smile – a reason to feel joyful, even in the face of pain – He is the one in control of my life. He has promised to never ask me to go though more than I can bear and promised to always be there beside me, no matter what I am going through.

My face can be the first thing people notice about me. I want my life and my face, to greet them with something that reflects the hope I have, even in the midst of my pain.

Prayer: Father God, may we find a reason to smile today, even in the midst of sickness or pain, because of the hope we have in You. Amen

ABOUT THE AUTHOR
Fiona Burrows lives in Melbourne, Australia. She is thankful for the difference God makes in her life as she lives with chronic pain. She enjoys finding time for writing, travel and photography.
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This daily devotional is compliments of Rest Ministries, serving people who live with chronic illness or pain. Copyright 1998-2009

Rest Ministries, Inc.
http://www.restministries.org
PO Box 502928, San Diego, CA 92150
toll-free 1-888-751-REST (7378)

Makes My Kids Laugh

This is currently their favorite YouTube. They simply cannot watch it enough.

ABC News Interview: XMRV and CFS link

What's a retrovirus? Why is XMRV considered a "game changer" for Chronic Fatigue Syndrome? Why is the XMRV / CFS link significant? Simple, clear explanations at http://abcnews.go.com/video/playerIndex?id=8864348.

Today's been another "hit by a bus" kind of day for me. Don't know if it's a reaction to yesterday's IVIG or something else? About 11 this morning I posted a facebook updates stating, "Rough CFS / XAND day. Finally out of bed, but not sure for how long. Nausious, lots of pain, sound/light sensitive, everything hurts and feels heavy and my body just wants to sleep. Was hoping to go pick up new glasses today, but doesn't look like I'll be up to driving anywhere. Going to pile my kiddos in bed with me and try to get some school reading and snuggling in."

Have slept a good chunk of the afternoon since then. Friend came to pick up our daughter for a while, little guy is currently sleeping and oldest is happily reading, so I'm going to try to get my brain in gear enough to gather paperwork needed for tomorrow's doctor's appointment at Incline.

Yesterday's IVIG was #11, so only one more scheduled. Still working with my doctors to try to figure out if we will go forward with another round of 12 IVs right away, skip them (at least for now) and go immediately onto an antiviral drug instead, start on anti-inflamitories, or something else all together.

Sweetest Day

My husband and I met 19 years ago this coming Tuesday, Oct. 20. That year it was a Saturday. I later learned that it had been "Sweetest Day" and I thought it was amazingly "sweet" that this is the date we would remember as the day we met. :) My curriosity drove me to learn the history behind this holiday I had never even heard of before, and I found it was rooted in the desire to show encouragement to orphans and shut-ins, both groups near and dear to my heart. There are probably better links out there, but here's one I could quickly find this morning:
http://www.theholidayspot.com/sweetest_day/history.htm

Rick, thank you for investing the past 19 years of your life into mine. I love you always!

Checking In

IVIG #10 was blessedly uneventful. It took several hours and my nurse commented on how, "This process really beats you up!" as she observed the dramatic change from the "bouncy" (her description based on my generally smiling personality, not my physical feeling) happy me, to the girl who couldn't even walk across the room unaided, within 20 minutes of the start of the IV. An hour into it I was so miserable I was actually moved to the only bed in the infusion room because I didn't have the strength to "sit up" in the recliner anymore.

But thankfully I had no dramatic reactions afterwards, like I did after the 9th infusion, so it looks like adding zertec to the mix was helpful afterall. I'll have my 11th infusion two days from now, then see one of my specalists, Dr. Peterson next Tuesday. It has yet to be decided if I will continue with another round of infusions after #12 or not. I have very mixed emotions about what I hope the final decision will be. It has been a hard go, but if we are going to go for another 12, I really would rather just keep moving forward now, with my existing PICC line and established schedule, rather than having to try to start over sometime down the road. We'll see what the experts say...

I still haven't really recoved from our RV trip (or from the trip to Stanford before that) and it took more out of me that I thought it had in the beginning. I'm hurting a LOT the past couple of weeks, and while last Monday was amazing good (typically the day after an infusion is really bad for me), I'm not seeing a huge bounce toward feeling better toward the end of the week these past two weeks, as I had been seeing in prior weeks. Travel just takes a whole lot more out of me even than I realize when I first get home.

Prior to the trip, I would typically have a very hard Monday, so-so Tuesday and Wednesday, then often start feeling fairly decent by Thursday or Friday and on through the weekend until my next Sunday afternoon IV. The past two weeks, Thursdays have actually been my hardest days rather than the day I start noting improvement, and today I'm still really dragging. It is so discouraging to feel that I can never get "caught up" or "rested up" enough to get to a level playing field. I have been fighting a fever all week and just plain feel rotten!

My doctor in Stanford wants me to come back there for bloodwork next week and that simply isn't possible. I cannot even begin to imagine how I could cope with another trip right now and fear it would land me in bed hard for a long time to come. It's crazy that Dr. Montoya in Stanford tells me it is critical to "reduce stress" (including physical, emotional, mental...) then my insurance dictates that he's the only specalist they will cover and it takes a 3 or 4 day trip for me to see him (1 to travel, 1 to sleep once I get there, 1 for the appointment itself, 1 to travel home again), not to mention the physical aftermath of trying to recover from the trip. The whole insurance situation and denial of coverage for my local specalist itself is pure stress! RVing was a much more gentle option for me than a standard car trip, but as I'm finding out the hard way still two weeks later, still not the answer I had hoped it would be.

Happy Memories

After my post earlier today about tears, I'm thankful to share some happy memories. All our pictures from our trip to Monterey are now live on our RV travel blog. Enjoy!
P.S. Even if you visited earlier this week, there are a lot of new ones just posted tonight.

Tears Today

The mountain-top emotional high of finally having answers has led me to exhausted tears today. Don't get me wrong. I'm still so amazed and thankful about the discovering of XMRV and it's link to CFS / XAND. I am still every bit as thankful for the diligent work of the Whittemore Peterson Institue (WPI).

But today the tears finally come. Tears of thankful release after years of pent up frustration over lack of answers. Tears of exhaustion on all levels, from physical to emotional. Tears of feeling overwhelemed at the road ahead - it feels like the past 19 years of my illness have simply been walking the road to find the starting line, and now that we've finally found it, now there is still the whole marathon to run ahead.

What have I exposed my family to? What will be the long term impact for all of them because of every decision I've made thus far? I'm glad I was blistfully ignorant when I choose to marry my husband (and obviously to engage with him in a sexual relationship) or when we set out against the uphill battle of infertility. I was ignorant of the fact that I am positive for XMRV (and yes, I was part of the test study, and yes, I did test positive). I'm so glad I didn't know, when I choose what I believed to be the healthiest possible choice for my babies, to breastfeed them, that the retrovirus XMRV is passed through bodily fluids.

Had I known, would I have made any different decisions? That's an impossible question to answer, for I look at the 4 most precious loves of my life, and I cannot imagine any different path than the one we chose; I cannot imagine not having any of them or the wonderful memories we have built together. So I'm thankful I was never in the position to make that choice, though I did try to break our engagement long ago (because of my fears over my health) and my husband would not hear of it, so for the question of marriage, I know he has no regrets and I find that so amazing! I do find myself grieving anew Noel, Joel and Hannah, our three precious babies who did not survive to live birth, and wonder again, with this new information, what role my health played in their tragically shortened lives.

For those earlier on the path than I am, I feel for you in those major life decisions that still lay ahead of you while so much unknown still lies on the table. I am very thankful to know that XMRV is not airborne nor is it passed through casual contact such as touch. While I can't help but wonder, and we obviously need to pursue testing for them, we do not even know for a fact at this moment that any of my family members will even test positive for XMRV. (If they do, that will be their story to tell, not mine, so I will not be posting medical information about any of them unless they some day ask me to.) It is simply the very fact that they need to be tested at all, because of their intimate relationship to me, that breaks my heart, and for that I also find myself in tears today.

If I have cause them harm already by what I did not know, what can be undone by what we discover now? I have to see this whole "starting line" as a wonderful window of hope, not only for me and the millions living with active neuro-immune illness already, but also for those who may have been exposed through our ignorance, that they might be spared our trials in the future because of where we stand today! Should XMRV prove to be the underlying cause of fullblown CFIDS and even possibly other neuroimmune conditions, then this discovery could mean a significant chance for a normal life in their futures!

It's so easy to feel undone, overwhelmed, anxious about all the what-ifs and could-becomes. Instead I simply must take one day at a time, watch this process unfold, and pray for great wisdom for the wonderful people who have dedicated their lives for seeking our answers and offering us hope. Tears come with the territory of CFS / XAND. My hormones and emotions can take wide swings and fluctuations by the very nature of my illness. Today is a tearful day and that's just the way it is.

More About XMRV and CFS

This article at http://www.oslersweb.com/blog.htm?post=638469 was so helpful in helping me sort through some of the rumors and "backstory" I've heard over the year about Chronic Fatigue Syndrome research, the CDC and various CFS organizations. It highlights what a huge breakthrough this is and why. I might not agree with all of the author's word choices, but her overall message really resounded with me.

I woke up yesterday morning with blurry vision (something I've been struggling with, but much more intense than normal) and in so much pain that I could hardly move without tears, couldn't let my kids even touch me (and we normally are big snugglers in the morning). It took a full hour and a half after pain meds before I could move enough to even get out of bed, then I was still in a lot of pain all day long. My dad had to drive the kids and I to their homeschool co-op and I had to use my big wheel chair that I haven't broken out in months (usually I use the smaller "transport chair" even though we refer it it as a "wheel chair" too). Don't know if this was finally the backlash from my trip, or still recovering from the scary reaction I had after Sunday's IV, or "just becuase".

I'm still hurting more than normal today, but significantly less than yesterday and my brain seems to be less foggy than it was when I was grasping for words and concepts continually yesterday. My vision is better again today, but this reminds me that I really need to get in for another eye exam, though I really have the feeling glasses aren't going to be the whole fix here and that I'm overdue for another MRI and brain spec scan.

Emotionally I'm on a "high" with the news of this research breakthrough, but that caused me to stay up til after 9:30 reading all over the internet, so I'm paying for my late night now and hope I don't have an additional "crash" as the adrenaline from the excitement begins to wear down. But how could I be anything but excited about such amazing and potentially life-changing news!

HUGE NEWS for CFS research!!!

Today's announcement of the discovery of the XMRV retrovirus' link to a debilitating neuroimmune disease that affects more than one million people in the United States, Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS), is of particular personal signifcance to me, offering such hope for answers and eventual development of reliable treatment for those of us living with neuro-immune illnesses like CFS.

I will be posting more on my own involvement with this research study and why I am so excited in coming days (today has been a very bad day for me physcially, and I'm just not up to posting much at the moment) but in the meantime, please find out more about this amazing breakthrough research at http://www.wpinstitute.org/xmrv/index.html and be sure to read through the excelent FAQs they have posted for you there on the Whittemore Peterson Institute website.

Other links related to this research:
NIH press release

95% of ME/CFS Patients Positive for XMRV, with More-Refined Test

Virus Isolated in Chronic Fatigue Sufferers

More links to come...

Insomnia & Hives

I've been WIDE awake for the past two hours. Feel drained and exhausted and want to sleep, but not happening. Finally got up in hopes of letting my hubby get some sleep as I've been flipping and flopping like a fish!
Also have a few hives. Just small ones, but SO itchy. Noticed the first one inside my elbow just as I was falling asleep last night, now I have one on the oposite hand and one on my side. Three doesn't amount to much, but they are kind of blistery looking and I've been running a fever this week, so don't know if this is something triggered by the IG or it's own little viral bug or just another flair of my crazy immune system...

IVIG 9, Our Freezer Mess and Trip News :)

Our trip was wonderful. All the updates are now live at Adventures in an RV and pictures should be added by the end of the week. We came home to find the power out in our garage and all the food in our "outside" freezers lost (we had been stocking up on sales and had a lot of frozen meat, so it was a significant loss) and a horrible mess and smell to deal with as we cleaned it all out. My mom came over for moral support and we documented the whole clean-up process with a camera for our insurance claim. In the end we had to throw away two large garbage cans filled to the brim with stinky, rotting, fly-swarmed food. Knowing how many people are struggling to put food on their tables at all right now, it was heartbreaking to see such waste, but we are thankful that our home owner's insurance is going to cover $500 of our losses.

Physically I did surprisingly well on our trip, I think in large part due to the IVs. Usually I have IG treatment ever 7 days (on Sundays), feel pretty bad the first day or two afterward, then often start feeling noticable improvement by about Thursday or Friday - I still wouldn't go so far as to call these "great" days, but many weeks they are encouragingly "better" days toward the end of the week.

Before our trip I had infusion #8 on Friday, just 5 days after #7, and it was a miserable experience, lasting nearly 8 hours and putting me in bad shape on Saturday and even the day we left, Sunday. But I was alseep before 9 just about every day of the trip (some nights as early as 7:30) and napped in the big bed in the back of the RV ever time we traveled, so between all the sleep and the ability to not be strapped into the confines of a car seat, I did not suffer many of my common phyical issues with extended travel. We used my wheel chair a lot and specifically chose not to do certain things in hopes of being able to more fully enjoy the things we did attempt. I only felt truly let down by my body once, when I was unable to join my family on a hike to try to get to the California tunnel tree, but overall, we just took it slow and focused on having fun as a family. Even with my pressure point bands and bonine, I was pretty miserable (nausia, feeling like I just couldn't take another moment in a moving vehicle) by the time we got to Monterey on Sunday afternoon, but that was the worst of it.

I did not have IVIG #9 until this past Sunday, putting 9 days between infusions this time around. Not only did I have a couple of extra "better" days at the end of the week because I didn't have to jump right back into another infusion so quickly, the infusion itself took only 2 1/2 hours with no complications during the IV!!!

While the infusion itself went quite well, I did have a pretty scary reaction after coming home (about 5 1/2 hours after my benadryl and maybe 3 hours after the end of the infusion) where I began struggling to breath to the extent that we were debating between going to the ER (but were afraid they really wouldn't know what to do with me not understanding my whole history) or simply calling 911 if it got any worse. After a double dose of my inhailer and another round of benadryl, it took about about 45 minutes for the frightening episode to begin resolving, allowing me to breath more freely again. In the meantime I was dealing with violent shaking (I think from the albuterol), ended up eventually hyperventalating (actually what I think finally allowed my body to settle down as I super-oxygenated), my PICC line started bleeding again (got that stopped pretty easily with a sand bag pack) and I had to fight from throwing up due to sever nausia.

The whole time I just kept thinking, "What I wouldn't give for a home oxygen tank right now!" as this felt like almost an exact duplicate of the reaction I had had during one of my early infusions when we first realized the need for oxygen through the infusion process, but without the safeguard of medical care readily available. My primary care physician suggests that it may be because we did such a fast infusion (the only other times I've been able to do it in 2 1/2 hours have been with saline co-pumping, something we learned is a medical no-no) and that next week we slow it back down and that I take zyrtec the morning of the infusion along with the benadryl just prior to infusion. Zyrtec is 24-hour acting and is a different kind of antihystimine so can be paired with the benadryl. All I know is that I hope I don't have another reaction like that one! Only 3 infusions left, they we evaluate if I go for another 12-week round or not.

Our Vacation

I've posted daily updates from our trip at http://classicRVadventures.blogspot.com/. Would love to have you "journey along" with us and leave your comments, maybe with childhood memories of your own. :)