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!!