Great News on XMRV!

Finally!  The long-awaited, withheld XMRV study from the FDA will be published soon!  Here's an excellent summary from the blog of Cort Johnson of Phoenix Rising.

A few key points:

• The FDA study does indeed replicate the positive results of the original XMRV study, showing XMRV in the blood of CFS patients.
• Andrea Whittemore, daughter of the founders of the Whittemore-Peterson Institute, is already "significantly improved" on treatments for XMRV.
• Another paper due out at the end of the year will show that XMRV causes immune system abnormalities.
• Several drugs have already been shown to be effective against XMRV in the laboratory.
• Pharmaceutical companies that halted their work based on earlier negative studies have resumed work on medications to treat XMRV, including many that are already on the market.
• Treatment trials with real patients should begin soon at WPI.

How exciting!!!  Check out this interview with Annette Whittemore and her daughter Andrea (it's the August 16 episode).  The Whittemore-Peterson Institute has its grand opening this week.  It looks like things are finally moving forward for CFS research - hurray!!

Local CFS Picnic a Huge Success!

In two previous posts this spring and summer (Birds of a Feather and CFS Moms Lunch), I told you about how wonderful it's been to meet a bunch of local Moms whose kids/teens all have CFS, OI, and/or Lyme.  Well, last evening, one of the moms hosted a backyard picnic for all of our families, and it was so much fun!


There were four of us Moms who'd met previously, plus all of our kids (sick and healthy), two husbands, and two new families - nineteen people all together, all of us linked through our common experiences with CFS and related illnesses.  One mom and daughter drove three hours for the picnic!  They haven't found any other teens with CFS locally, have had some terrible experiences with doctors, and were desperate to find someone who understood.  The parents all talked non-stop - we had so much in common!  Best of all, the teens all got along great and had a blast together.

Several of the teens have been living an isolated life, homebound for years and cut off from their old friends and classmates.  They were right there with the rest of the group, talking and joking, playing games, and even playing out in the yard.  One Mom watched her two sons play Frisbee with the other kids and said she was on top of the world!  I'm sure some of those kids are hurting today (as Jamie and I are), but hopefully, the joy and companionship were worth it.  As we got in the car to leave (at 10 pm!), Jamie and Craig shouted, "That was so much fun!  We have to do this again!"

What an experience for these teens who normally either live in isolation or struggle to get by and appear normal among their healthy peers, to be in a group of friends who instantly and intimately understand what they're going through.  I don't think the kids talked much about their illnesses - they seemed to just enjoy being together and making new friends.

Ken and I were both completely wired when we got home and tried to go to bed.  We'd enjoyed hours of stimulating conversation with parents just like us.  All in all, it was a wonderful evening.

Movie Monday 8/16

Yes, it is Movie Monday, but more importantly....it's Jamie's 16th birthday!!!  Sixteen years ago today, I was lying in the hospital shivering uncontrollably after a c-section preceded by 26 hours of labor!  Good times...ha ha

Seriously, I have 16 years of wonderful memories.  Jamie is a joy - sweet, caring, funny, and lots of fun to be around.  I just can't believe how quickly the time has gone by.

Now, onto the movies!  We made up for lost time this week and watched a LOT of movies...

• First, I forgot one last week...we watched Enchanted with the kids and all enjoyed it very much.  It starts out as a sort of parody of every Disney animated movie, with a handsome prince, a beautiful girl he falls in love with, and the evil stepmother Queen who wants to keep them apart.  The Queen banishes the girl to the real world - she pops out of a manhole in Manhattan! - and the other characters follow.  At that point, the movie switches to live-action.  It's all very clever and lots of fun.  Patrick Dempsey stars as the very practical single Dad who helps the princess-to-be.
• While Ken was out of town, the boys and I watched The Terminal, an excellent Tom Hanks movie about a foreigner who gets caught in a customs catch-22 and ends up living at the JFK airport.  Ken and I has seen it when it first came out in the theater.  The boys loved it.  It's fun sharing some old favorites with them now that they're older.
• We also watched Monsters vs. Aliens, a cute animated movie featuring the voice of Reese Witherspoon as a young woman who gets turned into a giant and ends up battling aliens to try to save the earth.  It was actually better than I expected.
• With Ken away, I indulged in a girly movie (aka chick flick), Made of Honor, again starring Patrick Dempsey (are you seeing a theme here?).  It was a sweet and funny romantic comedy, fairly predictable but enjoyable.  A fun bit of fluff!
• Friday night during Jamie's party, Ken and I watched Dreamland, an independent film that won awards at Sundance and other film festivals.  It's the story of an 18-year old girl caught in a web of obligations, to her grief-stricken father who hasn't left their trailer in two years and to her best friend who has MS.  They all live in a trailer park in the New Mexican desert called Dreamland (which, as you can imagine, is anything but). It's a unique story with excellent acting, and we both enjoyed it very much.
• Saturday night, Ken and I watched The Painted Veil, starring Naomi Watts and Ed Norton.  It's set in the 1920's when the two meet and get married rather quickly and then depart for China where he, a British virologist, is assigned.  Bored and disillusioned, his wife has an affair.  As punishment, he forces her to accompany him deep into the Chinese countryside to a small town experiencing a cholera outbreak.  The experience changes them and their relationship.  I have long heard great things about this book, and the movie was excellent.
• We watched The Pacifier starring Vin Diesel with the kids, during our post-party recovery weekend.  They had seen it a long time ago at a friend's house.  It's about a Navy Seal assigned to protect a family of 5 kids while their mother is away.  I was expecting a lot of silly slapstick featuring kids hitting his crotch repeatedly, but I was pleasantly surprised.  It's actually a pretty good movie, with more depth than I expected and a lot of heart.  We all enjoyed it.
• Finally, we watched Marley and Me with the kids last night. Another pleasant surprise!  Based on a true story, it's a very sweet story starring Jennifer Aniston and Owen Wilson as a couple with an unruly but lovable dog.  The movie follows them through new jobs, moves, and children.  It's funny but also moving and sometimes sad.  Overall, a very good movie.

Whew!  I told you we watched a lot of movies!  That's the fun of summer, with no homework or soccer practice or school events in the evenings.

Have you seen any good movies lately?

Quote It Saturday 8/14

Happy Saturday!  Ken's home, the party is over, and we have a weekend ahead of us with nothing scheduled - ahhhh!  And Jamie is even feeling OK this morning after being up late running around with his friends.

I just finished a remarkable book this week for my library's book discussion (which, by the way, was the highlight of my week!).  I'm probably the last person on earth who hadn't read it yet: Memoirs of a Geisha by Arthur Golden.  Despite all the amazing reviews and recommendations I'd heard, I just didn't think it sounded interesting.  Boy, was I wrong!

Golden is a very talented writer, and the book pulled me in from the very first pages and had me rooting for its main character, a young Japanese girl.  It's one of those books that completely transports you to a different time and place.  Besides the in-depth characters, fascinating plot and setting, and thought-provoking issues, the book is also beautifully written.  I tabbed a bunch of favorite quotes.  Here's one where the main character is musing about the changes in her life over which she had no control:

...and, of course, I couldn't stop thinking of the other life I'd once led.  Grief is a most peculiar thing; we're so helpless in the face of it.  It's like a window that will simply open of its own accord.  The room grows cold, and we can do nothing but shiver.  But it opens a little less each time, and a little less; and one day we wonder what has become of it.
          - Memoirs of a Geisha by Arthur Golden

Besides being beautiful prose, this quote really hit me.  I feel much the same way about my own grief over the life I once led before CFS.  In the early days of my illness, that grief was overwhelming, but over the years it has faded.  I sometimes still feel a pang of regret that I can't exercise or have a beer with my husband or do all the things I want to do, but the hard, painful grief has lessened its grip over the years, as I've become more accustomed to my new life.  It is what it is.  This is my life now.

What do you think?  Has it been the same for you?  Or are you still shivering in the cold?

Enjoy the weekend!

Living on the Edge

...on the edge of a crash, that is.  All this week, I've been feeling run-down and so-so but not horribly crashed - you know, sort of that in-limbo feeling?  And I know I've been pushing myself too much each day which only prolongs the feeling.  I go to bed each night totally wiped out and wake up each morning feeling OK but not great.

This summer has been so busy around here - running errands, driving the kids places, hosting their friends at our house (which always means more work for me preparing meals and doing dishes).  Actually, the kids have been helping.  They've been doing their own laundry all summer, unloading the dishwasher, and I've even trained them to rinse their own dishes and put them in the dishwasher (but if anyone knows how to train kids and teens not to leave dirty dishes all over the rest of the house, I'd like to hear about it!)

I'm just tired, worn out, draggin', wiped out.  You get the picture.  Most likely, some of this is still a herx reaction from restarting my Lyme treatment last month.  The knee pain and severe aches have subsided, but I'm sure the herx reaction is exacerbating all of my CFS symptoms.  I know I'm also staying up too late most nights.  It's hard not to during the summer because the kids are staying up later, too.

Ken is finally home from his week-long trip to Texas - I missed him!  Tonight is Jamie's 16th birthday party, so it won't be a quiet evening!  We'll have 9 teens here for pizza, games, and water balloons.  It won't be too bad for me, though.  It's great how at this age they really take care of everything themselves - Jamie sent out invitations on Facebook and planned the party himself.  Not like the old days when it was so much work coordinating their birthday parties! 

Of course, we kind of went overboard in the party department.  We had some pretty amazing birthday parties here.  Here are a couple of pictures, for old time's sake!  Jamie had a Harry Potter party for his 11th birthday - the party to end all parties.  That's my mom and her husband as Hagrid and Professor Trelawney.  Ken was Dumbledore, I was Professor McGonnagall, and two friends were Professor Snape and Madam Hooch.  We turned our entire house into Hogwarts, took a dozen kids to Diagon Alley (the basement) for hats and wands, held four classes including Potions, and played Quidditch in the yard.

The other photo is from Craig's pirate party for his 8th birthday, complete with treasure hunt, loot, and a pinata.  As you can see, the adults enjoyed getting into our roles!  Those were fun times, but this is so much easier, sitting in the family room while the kids throw water balloons at each other outside (I took a few pictures, then ran away!)

Time for pizza.  Hope you all have a great weekend!

Movie Monday 8/9

Sooooo glad it's Monday - the house is (relatively) quiet, the boys and I are alone, and there is nothing at all scheduled this week - not even a doctor's appointment. 

We had one more mishap last week - Craig got stung by yellowjackets on Friday.  This is not usually a big deal for him (he's not allergic like Jamie is), but two of the stings were near his eye and on his ear, and those swelled up HUGE!  Check out this gruesome picture.  By Saturday morning, his eye and ear were horribly swollen  - just exactly as Jamie's eye was two weeks ago when he got stung in the same spot!  So, we were back at the doctor's office.  She put Craig on steroids and antibiotics - she said you have to be extra cautious so close to the eye (and the brain).

The rest of the weekend was nice.  We enjoyed having my Dad and his wife here, but by Sunday evening I was totally wiped out!  I think the miniature golf yesterday and also making dinner were just too much time on my feet.  They left this morning and so did Ken for a business trip to Texas.  I have a quiet, easy, restful week planned.

So, we didn't have much time for movies last week:

• With my Dad and his wife and the kids, we watched Beneath the Planet of the Apes, sequel to the 70's classic.  I'm not sure I ever saw the sequel when it first came out. Of course, nothing can compare with the first one, but this was pretty good.  Everyone seemed to enjoy it, and Jamie wants to see the rest of the sequels (there were quite a few!)  We also haven't seen the more recent remake.
• That was the only movie we watched, but Ken and I watched some more Mad Men episodes from Season 1 on DVD and also started in on the first season of The Mentalist.  This is one of my mom's favorite TV shows, and I can see why!  We had watched an episode or two before but didn't know any of the backstory or who the characters were.  The pilot was excellent, and now we understand it better.  Its a crime show but with a great sense of humor.  I'm sure we'll watch more.  Thanks, Mom!

I need to make a run to the library and pick up a few good girly movies for myself this week, with Ken gone.  Any suggestions?

Have you seen any good movies lately?

Blessings

Better day today - feeling OK, boys and I got groceries, got an estimate on a new blower motor for the A/C/furnace that is half what the first one was - all good.

I realized I told you all about what went wrong this week but left out the most important thing yesterday - what we have to be grateful for.

Often, I'm the one in our house trying to look on the bright side of things, reminding everyone that we have a lot to be grateful for, but this week, it was Ken.  By Tuesday night - after spending much of the day at the eye hospital and dragging my exhausted body to the Apple store to hear the grim news on my computer, I was feeling pretty low and overwhelmed. 

We were driving back from the mall when Ken said to me, "We have a lot to be grateful for, you know." (that's usually my line!)  He reminded me how blessed we were to have such a good eye doctor who was able to find and repair such a small and hard-to-reach retinal tear, to be so close to such a highly ranked eye hospital, and to have the health insurance to cover such medical expenses.  Ken was feeling particularly grateful that his eyesight wasn't permanently affected, as he considered what it would be like to lose his sight.

And, of course, less important but still relevant, I was fortunate that my wonderful husband had already bought me a gorgeous new laptop to replace my "vintage" one, even if my timing on the data transfer was less than perfect!

I just wanted to end the week on a high note, and pass along this reminder to the rest of you.  No matter how bad things are or how many things go wrong, there are always people far worse off.  I have a lot to be grateful for, including a husband who reminds me to count my blessings.

Have a great weekend!

The Terrible, Horrible, No Good, Very Bad Week

(with thanks to author Judith Viorst)

To give you an idea of what my week has been like, today was the most relaxing day I've had so far and I spent it driving back and forth along the New Jersey Turnpike, visiting the Lyme doctor, and going to Target.  Seriously, it was a nice break!

I won't bore you with all the details, but here's a brief recap:

• Dishwasher broke.
• Air conditioning broke - AGAIN - for the 5th time in 3 weeks.
• I took Ken for his follow-up eye appointment, and the doctor did find a new retinal tear in his eye that the residents on call missed last week.  So, Ken needed another laser surgery, and we spent most of a day at the Eye Institute in Philly - scary and exhausting.
• While in the waiting room at the eye hospital, Craig called to tell me my laptop, "had a funny, burning smell and then went black."  Not good, right?  Nope.  Turned out the CPU burned out.  It's gone, kaput.  We made another trip to the Apple store, and they think the hard drive might be OK, but they won't work on it since it's "vintage!"  Yup, 7 years old is vintage.  You may recall I have a brand-new laptop, but I hadn't transferred the data from the old one yet because I was waiting for a special cable to arrive in the mail.  It did - the same day the old computer fried!

So, I've not only been busy and stressed but have had limited access to computers, so no time at all for either reading or writing blogs.  We still need to remove the old hard drive and try to get some data off it - just what we needed, another project!  I have made some progress with the new laptop, though (this is its maiden blog post!)

Jamie and I are both herxing (i.e. symptoms worsening) now from our Lyme treatments, but we're managing OK.  We had a good visit with the doctor today.

Tomorrow my Dad and his wife come to visit for the weekend.  I guess I'll have to finally get to the grocery store, huh?  They're very easy-going guests, though, so that's good.

So, I just wanted to explain my absence.  Hopefully, things will return to normal next week - whatever normal is!!

Movie Monday 8/2

Whew, what a weekend! As you know, Ken and I enjoyed a nice, relaxing week alone together while the kids enjoyed their time with my mom and her husband, but things really went downhill starting Thursday night!

Since it's relevant to movies, I'll give you a quick recap.  On Thursday, after dinner, we decided to splurge on a Redbox rental (ooh, aren't we wild and crazy?), so we drove to the local pharmacy that has a Redbox kiosk - if you haven't seen these yet, you have to try them!  We were walking back to the car, with a prescription (there's always one ready to be picked up, it seems), some ice cream, and a DVD, when Ken suddenly stopped cold and said, "uh-oh."  Some of his eye symptoms had returned, the ones associated with the torn retina he had at Christmas-time.  He was seeing big floaters in that same eye, so bad that he thought a balloon string was hanging in front of his face!  We rushed back to the house and called the on-call eye doctor who told us to come over immediately.  So we stuck the ice cream in the freezer and drove the hour-long drive up to Philadelphia.  Ken spent the next 2 hours being poked in the eyes and examined by two different on-call residents.  They finally concluded there was no new tear, but they couldn't explain why these symptoms had suddenly begun again.  I had to drive home, since his eyes were dilated, and I was so sick by the time we got home at 11 pm, I could barely manage to speak (sorry I was so cranky, honey!).  We're going back up tomorrow morning for a follow-up with his regular eye doctor.

Saturday was spent in bumber-to-bumper beach traffic on the NJ Turnpike while we drove up and back to pick up the kids.  And yesterday, our dishwasher sounded like it was going to explode - of course, no repairman is available until Wednesday.  The air conditioner repairman has been at our house 4 times in the past two weeks, so we're thankful that's at least functioning again!

Ok, enough whining (or whinging as my UK friends say, right?) - you came to hear about movies, right?  We saw some good ones this weekend

• The one we rented Thursday and finally got to watch on Friday was Unthinkable.  The title says it all, and this is not a movie for the faint of heart.  A terrorist, a US citizen, announces he has planted 3 bombs - nuclear bombs - in 3 American cities, and they will go off if his demands are not met.  He is captured fairly quickly, but won't say where the bombs are, so a specialist is brought in, basically a top-secret torture specialist played by Samuel L. Jackson.  The agent in charge of the investigation is appalled, but the military have taken over.  You may think you have a clear stand on torture when you start this movie (I certainly did), but it brings out many impossible-to-answer nuanced questions that the characters in the movie often flip-flopped on.  How far is too far to go when millions of lives are at stake?  The twists and turns are unpredictable and often appalling.  It is a very violent, disturbing movie, but these are issues that are really important to consider.
• Since the kids were away, and it was still early, Ken and I decided we needed to watch something lighter before attempting to go to sleep that night, so we next watched (500) Days of Summer, a much lighter romantic comedy with a bit of  a twist.  It was a welcome bit of escapism, populated with adorable main characters played by Zooey Deschanel and Joseph Gordon-Levitt, showing the beginning and demise of their relationship.  Very entertaining - thanks, Lori, for the recommendation!
• Sunday night, since the kids were pretty wiped out from their week, we watched an early movie with them, Dead Poet's Society, something of a classic by now but new to them.  I'd forgotten how sad part of the movie is, but it's also heartwarming and inspiring, too.  For once, the kids didn't tease me about crying during a movie. We all agreed we'd love to have Robin Williams' character as a teacher!
• During the week, Ken and I have been watching Season 1 of Mad Men on DVD.  It's sort of growing on us, though we still have trouble relating to any of the characters.  The men all lie, cheat, and treat women like morons; the women are either mean and nasty or act like morons.  I think we're staying with it just to root for Peggy (and maybe Helen), though it is also very well-done.  Ken laughs at how the men spend their days at the office sitting with their feet on their desks, smoking cigarettes and drinking whiskey and occasionally attending 5-minute long meetings - if only!

Have you seen any good movies lately?

Quote It Saturday 7/31 and a New Book!

Today's quote is from a wonderful new book written by one of our own!  I am very pleased to give you a first glimpse into Toni Bernhard's inspiring new book, How To Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers.  I have posted a full review of the book on my book blog, but I wanted to share a bit more about it with you here.

Although Toni doesn't write a blog herself (how could she when she's written a whole book??), I'm sure many of you will recognize her as a frequent visitor and commenter on many CFS blogs, including mine.  Toni is always supportive and encouraging, and I've felt a real connection to her ever since "meeting" her through my blog.

Her book explains how to be well in your mind when your body is sick.  She explains how some basic Buddhist principles can be applied to a life with chronic illness to bring more peace and joy into life - who couldn't use that?

My copy of her book is filled with dog-eared pages and underlined passages, with pages of notes tucked inside, so it's hard to choose a single quote, but I think this brief excerpt will give you some idea of her Buddhist approach to living with chronic illness:

...our life is always all right.  There's nothing wrong with it even if we have terrible problems.  It's just our life.
          - Toni Bernhard, How To Be Sick

There, don't you feel better already?  Her book teaches us how to accept our life as it is, how to live in the present moment, find joy, and banish destructive thinking.  I found it thought-provoking and inspiring, and I'm already trying to put some of her suggestions into practice in my own life.

The official release date of Toni's book is September 1, but it can be pre-ordered.

Hope you're all having a wonderful weekend.  We're leaving in a few minutes to go pick up our boys from their sailing week with their grandparents, so life returns to normal here.  I'm suffering a bit from a herx reaction to my Lyme treatment, but it's all right because this is my life, right?  I'm looking forward to seeing my boys.

Research Studies and the CDC

sigh....I saw this list of recent CFS studies this morning on a list I subscribe to and just had to share it with you - it's such an obvious example of all that's wrong with how the CDC approaches CFS.

These two items were listed:

 2. RES: Detection of an infectious retrovirus, XMRV, in blood cells of
     patients with chronic fatigue syndrome
  3. RES: Personality Features and Personality Disorders in Chronic Fatigue
     Syndrome: A Population-Based Study - CDC/Emory study

The first one (#2) is from the Whittemore-Peterson Institute, an addendum to their orginal Science article on XMRV in CFS, detailing exactly what kinds of tests they used to detect XMRV so that other organizations can replicate their results - very useful, real science.

The second item (#3) is the CDC's most recent study on CFS.  It's just so absurd and un-helpful, it speaks for itself, don't you think? 

Which research would you rather hear about, how to detect a newly discovered retrovirus in your blood or what personality features are commonly found in people with CFS? 

FYI, these are both from a list I subscribe to through Co-Cure.

Moments of Joy

I have really been enjoying my week of solitude and couple-dom with Ken while the kids are away.  In fact, I feel almost guilty about it! (almost)  My sister keeps saying how much she misses her daughter (my 8-year old niece is also along on the so-called Grandchildren's Cruise this week).  It's not that I don't miss Jamie and Craig - they're both wonderfully loving boys and I enjoy their company - but I am truly enjoying this brief respite of taking care of only myself.

During the summer, with the boys home from school, I have no quiet time at all to myself, except for my afternoon nap.  And it's rarely just our two boys at our house; most often, there are two or more extra boys here as well!  I absolutely love that my boys want their friends here and that their friends feel comfortable in our home, but it does make for a noisy, chaotic summertime!

Yesterday, I was suddenly struck by a burst of overwhelming joy during a rather mundane moment.  As I've written before, I've always felt fairly happy and content with my life, but sometimes I just feel filled with joy.  Yesterday, I was driving to the mall to visit the Apple Store (still trying to transfer all my stuff from the old computer to the new one - I LOVE the Genius Bar!).  I felt pretty good, it was a nice day (less than 90 degrees!), the sun was shining, and I was singing along to the radio.  It was a rather ordinary moment, but I just felt joyful!

I think that CFS has made me more open to simple joys.  I've found that when I spend so much time at home, going out in the world can feel like such a treat - oh, boy, a drive in the car!  And ordinary interactions with strangers - the cashier at the grocery store, the clerk at the library - feel delightful and fun.  I had a blast driving to the mall, browsing in the bookstore, and talking to the guy behind the Genius Bar at Apple!  Of course, by the time I returned home, I was tired and grateful for the quiet house, but these moments of joy are so satisfying.

Slippery Sleep

I had a terrible time sleeping last night.  It felt just like it did in my early years with CFS, but that's no longer normal for me.  Ever since finding effective treatment for the sleep dysfunction in CFS many years ago (it was the first thing my doctor treated once I was diagnosed), I usually sleep soundly for 8-9 hours now, maybe waking once to use the bathroom.  But last night, every possible type of sleep problem plagued me.

I felt sleepy when I turned out the light but couldn't fall asleep for over an hour.  I got up 4-5 times to use the bathroom (as my doctor told me in the beginning, "You're not waking up because you have to pee.  You're getting up to pee because you're not sleeping deeply.")  The last time I got up, I noticed it was just beginning to get light out, and I laid in bed but could not get back to sleep.  I got up to have a small bowl of cereal and take 2 valerian (a mild herb sort of like chamomile).  That usually does the trick on the rare occasions when I can't sleep.  Nope.  Still awake.  By then, it was almost 6 am, and I thought, "Great, I'll probably just fall asleep and then Ken's alarm will go off."

So, my next step was to move to my son's room since the kids are with their grandparents this week.  Jamie's room is the darkest and quietest, so I grabbed my three pillows, my earplugs, and my dark sock/eyemask (I'm so high maintenance now) and moved.  Finally, FINALLY, I fell asleep and slept right through until 9:15, but I kept having these weird dreams about my sleep being interrupted.  I dreamed that Ken burst into the room looking for me and woke me up (he didn't).  I dreamed that my neighbors were having a big party (they're actually very quiet, solitary people) and their visitors were in OUR backyard, yup, you guessed it, waking me up.    The brain is a weird and wild thing, isn't it? 

I felt OK after those last three hours of sleep and figured my after-lunch nap would revive me further.  Guess what?  I couldn't sleep again!  Or if I did fall asleep, it was a light sleep and only for a few minutes.

As I was putting my contacts back in after my nap, I glanced at my bedtime pill reminder box and saw that Tuesday was still full.  "Oh!" I thought, "that explains it!  I forgot my medicines last night!"  Then I realized that today IS Tuesday and I DID take my meds last night.  See what happens to my brain when I don't sleep well?

Sleep is like this mysterious entity, so necessary but sometimes so elusive.  I'd try to describe it better than that, but my brain is fried!  Ironically, I did a research report on the science of sleep for my high school AP Biology class.  At the time, it was all purely academic, learning about the stages of sleep.  I had no idea that 20 years later, restoring the normal stages of sleep would become so critically important to me.  And it is critically important, isn't it?  Whatever else is causing CFS or perpetuating it, a lack of deep, restorative sleep keeps the destructive cycle going and makes all of its symptoms far worse.

I have no idea what happened last night.  I've actually been feeling pretty good this week, so it wasn't a crash.  Hopefully, tonight things will return to normal for me (if not, I won't hesitate to reach for the Ambien this time!)  If you are still suffering from sleep dysfunction yourself, I urge you to talk to your doctor about treatment.  It's not a cure, but it helps so much to get good sleep.

Night, night!

Movie Monday 7/26

I hope everyone enjoyed their weekend!

With all we had going on last week, we didn't have time for any family movies, but Ken and I watched a couple this weekend.  What a treat to start a movie at 7 pm so we didn't have to stay up too late!  (I know, don't we sound like a couple of old fogies??  Wild times with the kids gone.).  So, we watched:

• Lions for Lambs, directed by Robert Redford.  A really excellent, thought-provoking film.  With Redford at the helm, it has some political overtones, but mostly, it just makes you think about some important issues.  The movie follows several different but related stories about the war in Afghanistan:  a slick and self-important senator (played by Tom Cruise - not much of a stretch!) shares his new strategy for Afghanistan with an experienced reporter (played by Meryl Streep); a political science professor (Redford) tells an underachieving student about two of his former students whom he greatly admires who are now fighting in Afghanistan; and the two students themselves, currently stuck behind enemy lines.  It's a powerful story about how war starts, how it is perpetuated, who is responsible when things go wrong, and the brave men and women fighting for all of us.  I found myself thinking about it all weekend.
• The Girl Who Played with Fire (Swedish film with subtitles).  My neighbor and I went to see the movie based on the second book of Stieg Larsson's runaway hit series.  In case you're counting, that makes 3 movies in a theater in one week for me!  Quite a record.  The second movie was just as amazing as the first, though I think best enjoyed if you've already read the book.  It's a very complex story, and they had to compress it quite a bit to even fit it into 2 1/2 hours.  Hollywood is at work on an English-version, but I don't see how it can ever be as good as the Swedish films.  The actors were perfectly cast.
• Heights, starring Glenn Close.  sigh...this one comes with a rather embarrassing - though not unique - story.   Here's our conversation during the movie:

5 minutes in:
Me:  Have we seen this before?  Some of the characters look familiar.
Ken:  Maybe.

10 minutes in:
Ken:  I think we have seen this before.
Me:  Yeah, maybe.

20 minutes in:
Me:  We definitely saw this before.
Ken:  yeah, we did.
Me: Do you remember how it ends?
Ken:  No.

So, we watched it all again!  It was more and more familiar as we watched.  This is not the first time we've done this!  Anyway, it's about the intersecting lives of several people in NYC.  They are mostly artsy types and their lives are mostly self-destructing.  It does end with a tiny bit of hope, but it's mostly a downer of a movie.  Not one of our favorites.

Have you seen any good movies lately?

Highs and Lows

Whew, it's been a head-spinning few days here, with some major highs and lows.

I'll start with one of the high points...Ken and the boys gave me a new Macbook for my birthday on Friday!  I was absolutely stunned by such a generous gift (plus they also gave me earrings and books!).  Ken is such a thoughtful, caring person.  He knew that my beloved old iBook is quickly becoming obsolete (and my even older eMac is already obsolete).  Both of the old computers can only run old systems, so much of the newer software won't run on them anymore.  And my old laptop has only 1 GB of memory left on it!  I've deleted every non-essential thing I can, but it's still so full that everything runs really slow.  I still haven't uploaded my vacation pictures from my camera because there isn't room on the hard drive for them!  So, I am really excited about having a new laptop that can run all the software and store all my photos.  In addition, it was a very nice birthday celebration.  We were at my mom's house in Connecticut, dropping off our kids for their annual week sailing with their grandparents, so it was fun to be with my family on my birthday.  Of course, my mom went all out, with an enormous dinner and homemade cake, plus flowers and gifts!

So, with such a wonderful day, what could have gone wrong?  We had a terrible scare with Jamie.  Last Wednesday evening, he got stung by a bee...and he's allergic to bee stings.  Fortunately, he did not have an anaphylactic reaction this time (a bee-keeping friend told us that bee allergies are species-specific), but it was absolutely terrifying.  We were at our neighbor's pool, and Ken and I hustled the boys back to our house, gave Jamie Benadryl, and stood by with Epi-pens ready.  We were so relieved that he didn't need the Epi-pens and didn't have to go to the hospital, but he woke up the next morning and the area around the sting (just above his eyebrow) was all swollen.  The swelling got worse over the next day, and Jamie woke us up at 5 am on Friday because it had gotten so swollen that he could hardly open that eye anymore.  So, while we were trying to get packed for the trip to CT, we were on the phone with the doctor, wondering whether we might end up spending a day in the hospital after all. Thankfully, Ken was able to stay home from work and took Jamie in to see the doctor, and she just prescribed Prednisone (steroids) for him.  By the time we left him Saturday morning, Jamie was doing much, much better, but what a frightening ordeal it all was!

And another low point...Guess what I gave myself for my 45th birthday?  Doxycycline.  Yup, I definitely still have Lyme disease and had to go back on the meds Thursday.  I was only off the medications for five days, but I was feeling worse and worse every day.  Even though I suspected the infection wasn't gone yet, it was still a real downer to face that fact.  I had a mini breakdown Thursday night as I went through our big bin of medications to find the three Lyme medications I had put away less than a week earlier.  Since going back on the medications, I'm feeling much better.  I was tired from all the stress and exertion packing the last two days, but the knee pain and achiness went away almost immediately after re-starting the meds.  Now I'm waiting for yet another herx reaction (worsening of symptoms) to begin again.  So, it looks like I'm stuck with two illnesses for a while longer.

The good news is that the boys are off on their adventure with their grandparents and cousin for a week (aka the Grandchildren's Cruise), and I can really use this quiet week right now.  I love my sons and enjoy their company, but it is tiring during the summer having so little downtime.  Plus, we usually have a whole houseful of boys, not just our two!!  I'm thrilled that they've both felt well enough to have friends over all summer, but this break is just what I need right now.  Ken and I thoroughly enjoyed our quiet evening alone last night.  Let's hope we're done with the lows for now...

Lyme Disease and Co-Infections

So, today is Day 4 of my trial of going off doxycycline to see whether my Lyme is gone yet.  I have to admit I'm not all that optimistic because I've tried this twice before and my symptoms came back...although I would love to be back to dealing with just one illness instead of two!!  (If you're new to my blog, I've had CFS for 8 years and just got Lyme two summers ago.  Check out this earlier post on CFS and Lyme for the background.)

I felt good the first few days without doxycycline.  I'm starting to get achy legs, a bit of a sore throat, and feeling a bit run-down, so now comes the guessing game - is it "just" CFS or is the Lyme still there?  We've had a busy week, with houseguests and a broken air conditioner (it's being fixed right now), so it could be a CFS crash.  With the aches, though, I suspect it's still Lyme.  I'll give it another day or two.

Meanwhile, I promised (weeks ago!!) to give you more details about the symptoms of Lyme and its co-infections (other common infections carried by ticks) because these infections are so often misdiagnosed as CFS.  I believe that anyone with CFS and/or fibromyalgia should look into Lyme because they share so many symptoms, particularly if you are getting worse over time and/or have increasing neurological symptoms.  More than 50% of those with Lyme were not aware of a tick bite because the ticks that transmit it are the size of a poppy seed.

Here is a brief overview of some of the characteristic symptoms of tick-borne illnesses (though, like CFS, there are a wide variety of symptoms).  If your symptoms match any of these, then you should definitely get tested for all of them (though the tests are prone to false negatives):

Lyme Disease

• Gradual onset, often monthly flares (the Lyme spirochetes have a 28-day reproduction cycle)
• Chronic pain, especially in joints; joint swelling; arthritis-type symptoms
• Flu-like symptoms - fatigue, achiness
• Brain fog that gets progressively worse
• GI problems
• Heart racing
• Lower than normal body temperature
• Increasing neurological symptoms over time

Bartonella (also known as Cat Scratch Fever - can be transmitted by ticks or cat scratches)

• Central Nervous System symptoms, including irritability/anxiety, GI upset, muscle twitches, overstimulation, light sensitivity
• Pain in soles of feet
• Occasional night sweats
• Rash that looks like strange lines, either horizontal or vertical (can look like stretch marks or like long scratch marks)
• Headaches

Babesia (causes Babesiosis)

• Abrupt onset with fever
• Night sweats
• Fatigue
• Headaches
• Severe Lyme symptoms
• Symptoms worsen after exercise

Ehrlichia (causes erhlichiosis)

• Rapid onset with fever
• Severe knife-like headaches
• Sore muscles
• Sometimes a spotted rash
• Low white blood cell count

I pulled these lists together from several sources.  This past blog post includes several links to excellent resources on Lyme and its co-infections.

Lyme and other tick-borne infections have been diagnosed in every one of the 50 states and in almost every country around the world now, thought they are more prevalent in certain regions.  Although they are hard to get rid of when they've been undiagnosed and untreated for a long time, these infections ARE treatable. 

The State of Me now an e-book!

Great news for those of you who prefer to download your books and read them electronically (I haven't tried it yet!).

The wonderful novel, The State of Me, written by fellow CFS blogger Nasim Marie Jafry, has just been released as an e-book at The Book Depository.  You can download it here.  It's also available as a paperback for those of us who still read books the old-fashioned way!

The State of Me is a wonderfully written novel about the life and loves of a young woman who happens to have ME/CFS.  I highly recommend it - check out my review.

Movie Monday 7/19

Wow, what a movie week we had!  The lazy days of summer...

First, the big news....I went to see TWO movies at a theater!  That's more trips to the theater than I usually make in a year!  Woohoo!  I went to a little independent theater with my neighbor and saw:

• The Girl With the Dragon Tattoo.  Wow.  I mean really, wow.  My book group read the book this past winter (if you haven't heard of this series yet, you must be living in a cave - oh, many of us do live in caves much of the time, don't we?)  Anyway, it's a series of 3 fast-paced, suspense thrillers written by Stieg Larsson, a Swede who delivered the 3 manuscripts to his publisher, then died soon after.  I finished reading the second book, The Girl Who Played with Fire, this weekend and plan to borrow the third from my mom next weekend.  The books are well-written and so compelling, you can hardly set them down (the subject matter is quite violent, but if you like thrillers, these are some of the best).  The movie (in Swedish with English subtitles) was just as good - they did a great job translating the book to the screen, and the actors were perfect.  Now that I've finished the second book, my neighbor and I might just have to go back next weekend to see the movie version of that, too!
• Mother and Child is an independent film that won a bunch of awards, including one at the Sundance Film Festival.  It's about three different women whose lives have all been affected by adoption.  Annette Bening plays a woman who got pregnant at 14 and was forced to give her baby up for adoption.  Thirty-seven years later, she is still haunted and obsessed by the daughter she never knew.  Meanwhile, her daughter, played by Naomi Watts, is a successful lawyer with some major commitment issues who was also deeply affected by the fact of her adoption.  A third woman, played by Kerry Washington, can't have children of her own and is going through the process of adoption.  It was excellent and very well-acted (Samuel L. Jackson and Jimmy Smits also star in it) - definitely sad in parts, though.  Ken thought it sounded like a "chick flick" and was happy to miss it!

Back at home, we watched:

• Star Trek with the kids.  Another wow - great movie!  Ken and Jamie have been dying to see this since it came out in theaters last year.  Ken is a huge Star Trek fan from way back, and Jamie loves science fiction and has enjoyed some of the older Star Trek movies and TV shows (good sick day distractions!).  This new movie is a prequel, following Kirk and Spock during their early years in the Academy and on their first assignment.  It was really well done, with amazing special effects and excellent acting.  The casting was perfect, and it was fun for Ken and I to see each of the original cast members show up as 20-somethings!  When it ended, we all applauded, and Jamie said, "I want more!"
• We also watched Percy Jackson and the Olympians: The Lightning Thief, which Craig had bought in the mall last week with a gift card.  We're all big fans of the book series, and Craig is the only one who saw the movie in the theater (his class went to see it).  It was very good, and we all enjoyed it.  If you haven't read the books, it's an exciting adventure featuring Greek gods in modern day, with lots of action, suspense, and humor.  Craig and his friend watched it again Saturday night when he slept over!
• Ken and I watched Everybody's Fine, a recent DVD release starring Robert DeNiro as a father who recently lost his wife.  His four kids are all grown and scattered across the US.  He feels sort of lost without his wife, who always kept in touch with the kids, and tries in vain to get the whole family together.  He finally decides to set out himself to visit each of his kids - surprise!  DeNiro was great in the movie.  It's sad at times but also uplifting in the end.
• Finally, with summer TV showing all reruns, Ken and I took Toni's advice and got the first DVD of the TV show Mad Men from the library.  We've watched a few episodes so far.  It's easy to see why it's won so many awards and accolades - the acting is excellent and the depiction of 50's life is compelling.  We're liking it OK, but it's hard to feel any empathy for any of the characters.  Were people really this cruel to each other in the 50's??  All the men are cheating philanderers, and all the women are nasty to each other.  Interesting show, though.  We plan to watch more.

OK, I gotta run - we have house guests coming in a few hours, our A/C is broken (again), and I have to grab an early nap before the guests and the repairman arrive!

Have you see any good movies lately?

CFS Moms Lunch

Our little local group of moms whose kids have CFS, OI, and/or Lyme got together for lunch again yesterday!  It was lots of fun again and great to talk to everyone.  We all have so much in common that there is never a lag in the conversation!  It's a great group of moms - all warm, intelligent, strong women, all trying to be advocates for their kids and find answers.

We had a new "member" join us yesterday.  We met a year ago at a mutual friend's graduation party, and her daughter is in Jamie's class at school.  She's had undiagnosed fatigue for years now, along with other medical problems, the latest of which is mysterious foot pain.  We told her all about CFS, OI, and Lyme (a common culprit with foot pain).  I was afraid we'd overwhelm her, but she was grateful to finally get some information and possible ideas of what might be going on.  We share the same pediatrician (who, as you know, has been very supportive of Jamie and Craig), so I suggested she start there and tell her she'd talked to me.

Also, some of the kids met yesterday for the first time!  They're all teens (except Craig who is 12 1/2).  There were 5 kids there yesterday (including 1 healthy sibling) - they hung out in the mall food court and browsed at Barnes & Noble while we had lunch.  They all seemed to get along well and enjoyed meeting each other.

Next up: a family barbeque in August!  One of the moms offered to host a backyard barbeque so the rest of our families can meet.  We're all looking forward to it.

It's been so worthwhile for all of us to meet and get to know each other - we've shared our stories, successes and failures with various treatments, strategies for getting help from schools (one of the moms is an ex-school district administrator), and other tips.  Plus, it's so nice to be with people who totally get it and understand exactly what it's like to live with these challenges.  Well, it's like our virtual community on the blogs only face-to-face!

If any of you know of others in your area with CFS, I highly recommend getting to know them!

We're all a little tired today - cuddled under blankets in the family room watching tv!  Besides our lunch, Jamie hosted a game night at our house last night. There were nine kids all together, from 6 to 10 last night.  They had a great time!  I ordered way too much pizza (I thought teens were supposed to eat a lot!) so guess what we're having for dinner again tonight?  It's OK with me - no cooking again!

So, we're kicking off the weekend with a quiet day of rest.  How about you?

NY Times Article on XMRV and CFS

Here's a New York Times article published yesterday on the public outcry over holding back publication of the latest XMRV/CFS study.  It's actually a very good article for a non-CFS publication!   It explains the science, the controversy, and some background very clearly.

The article includes a link to a blog about treating CFS/XMRV with anti-retroviral medications, written by a CFS patient (and doctor) who is treating herself and her daughter, both diagnosed with CFS, with anti-retroviral drugs - apparently with some success.  I haven't had a chance to read the blog myself yet but intend to later today - looks fascinating!

XMRV Webinar Tomorrow & Update

The CFIDS Association is hosting another webinar, tomorrow July 15 at noon Eastern time.  This one is an update on XMRV, with two speakers who are both top-notch CFS scientists/doctors - should be a good one!  I won't be able to attend (again!) because we're having our second Mom lunch tomorrow with the other local moms who have kids with CFS, OI and/or Lyme.  This time, most of our kids are coming along, so that should be fun.  Anyway, check out the CAA website for full information on the XMRV webinar.  If you're able to participate, let me know how it goes!

This may be old news for many of you, but there was apparently some big news on XMRV while we were away on vacation.  I missed most of the hubbub (which was kind of nice), but here's the gist of it:
(I apologize in advance to my non-US readers for all of the acronyms - all you need to know is that they are ALL US government agencies) -

Apparently, the NIH and the FDA sponsored a joint study on XMRV in which they found the retrovirus in 80% of the CFS patients tested.  So far, so good, right?

At the same time, the CDC conducted a study of XMRV in CFS and failed to find XMRV in ANY of the patients they tested.  No big surprise - Reeves was one of the study authors and not finding XMRV supports his longheld belief that CFS is mainly psychological.

So, both studies were scheduled for publication (in different publications) at about the same time.  Someone in the government got wind of this and, apparently to avoid embarrassment, they stopped the FDA/NIH study from being published but allowed the CDC one to go forward.  This is when an uproar began among the CFS community.

That's where things stand currently, but everyone knows about this other study that found XMRV in CFS patients, so I don't imagine they'll be able to hold back its publication much longer.  I heard the main author - a highly respected virologist - is doing some extra testing to verify his results.

If you're interested in the details behind all this, then, as always, Cort Johnson at Phoenix Rising wrote an excellent summary of the whole complicated controversy.

So, now it's time for our UK friends to think, "Wow, they're even more messed up over there than our own government is!"  It seems to go back and forth, doesn't it?

As for me, I'm crashed today - sore throat, aches, pounding heart, the works.  I managed through the first three days of my period pretty well, so I'm not complaining.  I canceled my plans to go to my library book discussion today, but it's the first horizontal day I've had in a long time.  Lots of reading today...

Movie Monday 7/12

Oh, I just realized it's Monday...time to resume Movie Mondays!  It's hard to remember what day it is during the summer.  I handed Jamie a full weekly medicine reminder box at lunchtime today, and he took the Thursday pills!

We got back into our routine of watching DVDs this weekend with a couple of good ones:

• Friday night, Ken and I watched King of California - thanks for the great recommendation, Toni!  Michael Douglas stars in this oddball story of a bipolar man who is released from the mental hospital and becomes obsessed with finding a centuries-old Spanish treasure that he believes is still buried on the site where the local Costco now stands.  His 16-year old daughter, who is the responsible adult in this relationship, gets pulled into his quest unwillingly.  Michael Douglas does a great job as a crazy guy, and the actress who plays the daughter is also excellent (sorry, I can't remember her name and don't want to get up off the couch!).  As Ken said (referring to my tendency to choose oddball films), "Definitely quirky, but this one was good quirky!"
• Craig went to a sleepover Sunday night, so Ken, Jamie, and I watched Sherlock Holmes, the recent release starring Robert Downey Jr. and Jude Law.  It was very good, though more physically violent than you'd expect.  Jamie says it's pretty true to the stories and books, though; they refer to Holmes as being a very good boxer who sometimes had to use his skills in a case.  Jamie's the expert - one summer he read the entire works of Arthur Conan Doyle.  He even carried the encyclopedia-sized book through several airports during a trip to Oklahoma!  Both actors were excellent in this movie.

Saturday night, we enjoyed an evening with old friends from our days in New Orleans.  One family had moved to Memphis for four years and just moved back to Delaware area last month, so we had them and another family over for dinner.  Nothing like old friends who've known you for twenty-five years!

Have you seen any good movies lately?

P.S.  If you or your kids enjoy reading, you might want to check out my other weekly Monday post on my book blog that lists what all of us have been reading the past week.

Quote It Saturday 7/10

It's been a very long time since I posted a Quote It Saturday, partly because I've been too busy to blog on the weekends and partly because I've been too busy to write down quotes as I read lately!  I actually have tons of things to do today, too, but I wanted to share this with you.

Today's quote isn't from a book; it's something that Jamie's pediatrician said to me on the phone yesterday that really touched me.  I called her to fill her in on what's going on with his Lyme and co-infections.  I've mentioned many times here how blessed we are to have this wonderful doctor as our boys' pediatrician - she's compassionate, intelligent, and always willing to learn something new (a rare trait in doctors, I've found).  She talked with me for about 20 minutes, asking all kinds of questions about what tests the Lyme doctor ran, how the results turned out, and how he plans to approach treatment.  When I told her he thought the lines on Jamie's back were definitely from bartonella, she sighed in frustration.  "I've seen those same lines on the backs of a half dozen teen boys this summer," she said, "but these are healthy kids with no other symptoms!"  She's understandably frustrated by the uncertainties inherent in diagnosing Lyme and co-infections.  Finally, at the end of our conversation, she said to me:

I want you to know that it's because of your intelligence and all your hard work in researching this stuff that you and your family are doing as well as you are with such serious illnesses.  You're doing a great job.

Tears came to my eyes.  All these years (she's been the boys' doctor since they were born), I wondered if she was just patiently putting up with me but thinking I was a pest, constantly bringing her new information and questioning everything.  Her words really touched me deeply and made all the time, effort, and stress of the past few months (years?) seem worth it.

In addition, she asked me to write a very brief summary of why we suspected Lyme and bartonella in Jamie and how the tests turned out so that she can pass that information onto the pediatric doctors who are supposed to be our local Lyme experts.  When she talked to each of them about Jamie's case a couple months ago, they'd never heard of the pain in the soles of feet that Jamie was having - but our Lyme doctor says it's a very common Lyme symptom.  That's just how she is - constantly trying to improve her own knowledge and that of other doctors.

As for Jamie, he's pretty wiped out today, but I'm not sure it's a reaction to the Lyme medication yet.  He and Craig have been running wild all week - sleepovers, swimming, games, and, for the last two nights, flashlight tag until 10 pm!!  I love to see them having so much fun and acting like normal kids.

Hope you're all enjoying the weekend!

A Double Lyme Update

Where to start?  I have so much to tell you  about our trip to New Jersey today to see the Lyme doctor (Craig wasn't happy he had to come along, but that's life).  I'll start with Jamie, my almost-16-year old son.

The doctor reviewed Jamie's test results with us.  He tested positive - indicating both old and current infection - for Lyme disease.  That wasn't too surprising, since we suspected it.  This could be the same Lyme infection that triggered his CFS to start back in 3rd grade or the Lyme infection he was treated for in 7th grade (he never fully regained his stamina after that one) or this could be a newer infection he picked up in the last year or two.  No way to tell really.  Lyme is transmitted by a tick bite (many people -myself included - can't recall being bitten because the ticks that transmit it are tiny) and is caused by a spirochete (similar to the one that causes syphilis), something closely related to bacteria and treated with antibiotics.

Jamie also tested positive for babesiosis, another common tick-borne infection (often referred to as Lyme co-infections) that often accompanies Lyme.  Babesiosis is caused by a parasite, a paramecium, if I remember my AP Biology correctly!  It's helped by antibiotics but also needs some specialized medications.

You may remember that all this started a few months ago because we noticed several unusual symptoms in Jamie - including lines on his back - that are associated with bartonella, another tick-borne Lyme co-infection.  Jamie's bartonella test came back negative, but the test is often inaccurate, so the doctor will treat for that, too, since his symptoms match.  Bartonella is caused by a bacteria and treated with antibiotics, though it usually requires some different medications than Lyme.

The doctor's strategy is to begin with a broad-spectrum antibiotic that will work against the Lyme and will also begin to chip away at the other infections.  Doxycycline is often the first choice, but it causes extreme sun sensitivity (as I can attest!), so during the summer, he prefers to prescribe Bactrim (I'm allergic to sulfa drugs and can't take it).  So, Jamie will start on that tonight, and we go back for a follow-up visit in 4 weeks.  He also noted that Jamie shows signs of yeast overgrowth and recommended an herbal product that should greatly improve his GI symptoms.

We are all feeling both excited and a little scared!  The doctor did say to expect a fairly severe herx reaction (symptoms get worse before they get better) because he has three infections and has probably had them for a while (we first noticed the bartonella lines a year ago).  So, the rest of the summer could be rough for Jamie.  On the plus side, the doctor is very optimistic that Jamie will improve with treatment and most likely see an improvement to symptoms he's been living with for years.  In fact, the doctor - who is very mild-mannered and understated normally - said he finds Jamie's case very interesting and exciting.  Though he's not a CFS expert, he understands that many cases of CFS begin with some sort of triggering infection.  We've always known Jamie's began with Lyme in 3rd grade, so he's interested to see how much Jamie will improve with treatment, especially since he was never before tested for any of the co-infections.  Jamie is in very good spirits, with the same hopes and optimism as the doctor.

As for me, he wants me to try going off doxycycline!  Though it's very hard to differentiate CFS symptoms from Lyme symptoms (as is obvious from Jamie's case), I knew when I got Lyme because of new symptoms - mainly nausea and knee pain - and I haven't had any of those symptoms in months.  His general rule of thumb is to treat until the patient has gone 6-8 weeks without symptoms, but my case is special!  The CFS has made it harder to get rid of Lyme, and I've tried stopping antibiotics twice before, and each time, my symptoms returned within a week.  So, he wanted me to be symptom-free for 2-3 months before stopping.

As much as I can't wait to get off these high-dose antibiotics, I'm scared!  The previous two times I tried, I had to go through another 2-month herx reaction each time I restarted.  I don't want to go through that again!  He told me it's up to me whether I stop today or when I run out of pills in a couple of weeks, so I think I'll wait.  I also need to go off my birth control pills (I take 90-day pills) and get my period soon, and that always makes all my symptoms worse, so I think I'll do that next week - I don't want to have multiple changes at once so I can accurately assess the effect of stopping the doxy.  I kept asking the doctor about "what if" my symptoms return, and he just smiled and said, "You'd go back on the doxycycline, but I'm optimistic."  I like that about him.

So, lots of news in our family today and lots of mixed emotions.  Nothing to do now but wait and see - for both of us.

P.S. Renee - The doctor recommended the very same supplements you did to counter the effects of the herx!  Thanks for the great advice - I'll order them tonight!

Summer Living

Now that we're home from vacation, we're getting into the summer routine (or lack thereof!).  I still have 500 unread e-mails (slow progress) and piles of vacation stuff are still stacked around the house, but the laundry is all done, the mail is all sorted, and the to-do list is back in action.

Although I miss the quiet mornings all to myself, it's very nice not having to get up at 7 am and not worrying about school events, soccer, and homework in the evenings.  In fact, relaxed evenings are probably my favorite part of summer - no schedule, no stress.  I have been staying up too late, though, and am pretty tired today.  I can't seem to sleep in very much no matter how late I go to sleep.

The boys are having a blast this week.  I've been letting them go a little crazy and do everything they want because tomorrow Jamie and I see the Lyme doctor.  Jamie will probably start treatment tomorrow (we'll find out the details at the appointment - all we know for sure right now is that he tested positive for multiple tick-borne infections), and there's a good chance he'll go through a period of feeling much worse (herx reaction) before he gets better.  Since that makes the rest of the summer kind of an unknown, I've been letting the boys pack in a lot of fun this week - they've had two sleep-overs, gone swimming, golfing, and been with friends pretty much all the time!  It's a little harder on me (banana-chocolate chip pancakes for 4 boys this morning!), but I'm worried about what's in store for Jamie.  Hopefully, he won't react too badly.  I'll let you know what we find out tomorrow.

Hope you're enjoying summer so far!

Home Again, Home Again, Jiggety Jog

We arrived back home from our 3-week road trip last night, in time to have a late dinner (we were all sick of eating out after our last three days on the road).  We drove to Oklahoma to see Ken's dad with our camper, making lots of stops along the way, then spent a week in New Mexico, which we all loved!  We especially enjoyed our time in the Santa Fe National Forest, northwest of Santa Fe - the mountains were wonderful!  If you'd like to see pictures of our trip, just visit our road trip blog.  Scroll down to June 13, 2010 to read the entries in order.

As usual, I felt pretty good for most of the time while we were on vacation.  I had a few days where I felt really tired, but I managed an amazing amount of exercise and exertion!  In New Mexico, I did a 2.1-mile hike in the hot desert heat at Bandelier National Monument, including climbing up lots of steps and ladders to climb into the cave dwellings (you can see pictures on the trip blog). It was really cool, but I was soooo tired afterward!  I had planned initially to just go on the 1-mile loop hike and wait on a shady bench while Ken and the boys did the extra 1-mile to the highest cave dwelling, but then I talked myself into doing it all.  I was wiped out the next day, but I'm glad I did it.  And I knew better than to even contemplate the next day's hike - Ken and the boys hiked 2 miles from our campground to a series of warm springs out in the backcountry (and back another 2 miles!).  They loved the hike and the soak, but I was happy to stay in the camper and take a nap!

On our way back through Oklahoma last week, we stopped by to meet fellow CFS blogger Dominique (of 4 Walls and a View) for lunch at P.F. Chang's.  We had a wonderful time together.  Dominique is just the same in person as you'd imagine from reading her blog - warm, vibrant, and intelligent with a great sense of humor.  It was fun to meet her in person after getting to know each other online.

Now, we're faced with LOTS of laundry, a big pile of mail, and that ever-lasting to-do list that I left behind 3 weeks ago.  On the other hand, it was very nice to sleep in my own bed last night, and we're enjoying all the wonderful fresh produce we bought at an Amish farmstand on the way home (we live close to Lancaster, PA).  Now I need to try to maintain my stress-free vacation mindset...

Happy 4th of July!!

A Full Day

Whew!  What a day we had yesterday!  We're camping just outside Albuquerque, New Mexico.  The nights are nice and cool here in the mountains where the campground is (and they have WiFi!), but it's been in the 90's during the day and especially hot in the valley - Albuquerque is like a bowl, surrounded by mountains.

We started the day with a trip to Petroglyph National Monument, where we took two short (but HOT and uphill) hikes to see the writing on the walls (ha ha) - it's actually writing on rocks.  Very cool - there were hundreds of petroglyphs of all sorts of mysterious pictures and symbols, some dating back thousands of years.

We had an amazing lunch at Sophia's Place, a little cafe we found through one of our favorite TV shows, Diners, Drive-Ins, and Dives.  The food was incredible - super fresh and everything homemade!  I had fish tacos - mmmm!

After lunch, Ken just drove aimlessly around the city, in a futile attempt to allow me to nap in the air conditioning.  We figured it would be too hot back at our camper, but it was pretty hard to nap in stop-and-go city traffic.

Eventually, I gave up, and we spent some time wandering around Old Town in Albuquerque, a historic area of pretty gardens and squares, and lots of little shops.  By 3:30, I was really pooped out, but it still seemed too hot to come back to the camper, so we went to the planetarium in the local Natural History Museum.  Our boys had never been to a planetarium before, so that was fun - plus it was cool, and I could sit back in a comfy seat with my feet up!

We finally came back to the camper for a light dinner, and I tried another nap - better but still too short.  In the evening, we took the world's longest aerial tram up the side of Sandia Mountains - up to 10,300 ft!  It was freezing up there!  We took a short hike along the edge of the mountain and were treated to incredible sunset views of the mountains and the city below.

As you can imagine, I'm pretty wiped out today - sore throat and very tired.  Plus, my allergies are kicked up by something here.  Today will be a quieter day - we're moving into the mountains north of Albuquerque for a few days.

If you'd like to see pictures of our trip so far or follow along with the rest of it, you can check out our trip blog.  I wasn't going to mention it until we got home, but we have lots of people watching our house while we're away.  Besides, if anyone tried to rob us, they'd be sorely disappointed!  We do have a big house in a nice neighborhood, but all our money goes to medical expenses, and whatever is left is used for travel.  We have 30-year old furniture and ancient electronics.  We still tape TV shows on a VCR!  Anyway, check out the blog.  Time to pack up.

Ooooklahoma!

Hi ya'll...I have to adjust my east coast speech patterns while we're out here in Oklahoma, visiting Ken's dad.

It's been a good trip so far, with lots of fun stops on the way here.  We did suffer one minor setback - our first night camping in Tennessee, Jamie woke up with a nasty stomach virus.  Poor kid - not a fun way to travel!  We tried to hang out at the campground for a while so he could rest, but a huge line of thunderstorms headed our way, so we had to pack up the camper fast and head out.  We set Jamie up lying in the back seat, while Craig had to squeeze into a tiny spot in the third row, surrounding by our luggage!  Fortunately, it only lasted a day, and he's doing fine now.

I've been managing pretty well.  I felt good most days on the way out here and have been managing some hikes.  We took two hikes in Arkansas, where it was REALLY hot, and I felt a bit tired for a couple of days after that, but otherwise, I've been doing well.  Nothing like that stress-free vacation frame of mind...

Jamie's Lyme News

Oops, I forgot to tell you....we got some news (well, sort of) about Jamie's Lyme tests this week.  I was supposed to drive him to NJ today to see the Lyme doctor and review the results of his Igenex tests, but with all that went on this week, I just couldn't spare a full day for the trip.  I figured even if he tested positive, I wouldn't start him on treatment right before vacation anyway, in case he has a bad herx reaction.

So, when I called to postpone his appointment, I asked them if they could check his test results.  She didn't want to give me details over the phone, but she said he did have more than one positive test - I'm guessing Lyme and bartonella since that's what we suspected.

So, he and I have appointments the week we get back, and we'll see what's ahead for him.  Since we suspect he's had the bartonella for almost a year now, and the Lyme could even be left over from when he had it in 7th grade (3 years ago), he could be in for a severe herx reaction (the initial worsening of symptoms when treatment starts).  But there's no school for almost 3 months, and hopefully, he will eventually improve with treatment.  We've been worried because his condition has sort of plateaued over the past few years - maybe this is why.  We're very hopeful for his future.

Still Hanging In There...

I still have a long list of things to get done before we leave on vacation, but I just had to take a few minutes out to touch base with all my online buddies - I've missed the blogging world this week!

I've been running my butt off all week long (so has Ken).  My friend's been trying to catch me on the phone and was laughing that every time she calls, Jamie says I'm at the store!  Believe it or not (I hardly can myself), I am still managing OK.  I wish I knew what the secret was - why I was so totally incapacitated for 8 months this winter and why I'm suddenly doing well again.  Not that I'm complaining, but it would be nice if I had some control over it.  I usually do well in the summer (except for two years ago when I got Lyme).

As of five minutes ago, I finally finished planning our trip and making reservations!  Just in time.  We're heading back to Oklahoma with our camper to see Ken's Dad, then to New Mexico.  We've made the trip to Oklahoma many, many times and have our favorite stops - including Shenandoah National Park and Petit Jean State Park in Arkansas - but we're looking forward to exploring new areas in New Mexico.

OK, back to the list.  Hope everyone is enjoying the beginning of summer!