Surgery and CFS

I know I'm a bit overdue in writing this post.  I was waiting so that I could tell you how easily Jamie came through his oral surgery on Monday...but, alas, that hasn't happened.  He's had a severe sore throat and swollen glands since then, evidence that the stress of surgery caused a CFS flare-up/immune over-reaction.  He is improving, though, slowly by surely.  The swollen lymph nodes are almost back to normal.  Of course, his jaw is sore and stiff, too, from the extraction of his wisdom teeth.  Still, I think the surgical guidelines we used ARE helpful.  Who knows?  Maybe he'd be even worse off without the precautions we took.

We've been fortunate in our family.  Since getting CFS, none of us has needed major surgery, only minor outpatient procedures. I had a laproscopic exploratory for ovarian pain (there was so much scar tissue, the doctor couldn't even see my right ovary!), Craig had his adenoids out when he was 10, and Jamie just had his four wisdom teeth extracted this week.  All three of those surgeries were done out-patient but under full anesthesia.  In all three cases, we used Dr. Lapp's wonderful recommendations for people with CFS or fibromyalgia who are undergoing surgery.

This is a great article and highly recommended.  We print out copies to share with the surgeon and anesthesiologist.  You can read through the detailed guidelines yourself, but most of it focuses on the fact that most people with CFS (studies show more than 97%) and many with fibromyalgia have some form of Orthostatic Intolerance and so need special consideration for surgery and anesthesia.  For instance, IV fluids always help people with OI, and certain anesthesias, including nitrous oxide which is commonly used for oral surgeries like Jamie's, can worsen the effects of OI.  The article also covers typical nutrient deficiencies and medication sensitivities for people with CFS and/or FM.

Of course, the details of your own experience with CFS/FM are critically important to share with all medical personnel involved with your surgery - what medications (and supplements) you take, your typical symptoms, etc.  It took over an hour to review all of Jamie's medications and supplements over the phone with a nurse the week before his surgery!  I offered to just fax her the list, but she wanted to do it the hard way...  Supplements are just as important to discuss as medications, as they may have adverse effects for someone undergoing surgery, and you may have to stop taking certain ones a week before your surgery to protect your safety.  Jamie had to stop his melatonin for a week (he is relieved to be back on it now!)

Besides giving copies of the article to everyone ahead of time, we also make sure to talk to the surgeon and the anesthesiologist the day of the surgery.  This is easy to do because they come in to do a pre-surgery check anyway.

We were lucky.  From Jamie's first visit to the oral surgeon, he understood Jamie's medical challenges.  I don't know how familiar he was with CFS, but he certainly understood about POTS and NMH (i.e. OI). when speaking to medical personnel, I always mention POTS and NMH as well as CFS because these are common conditions that occur in non-CFS patients that they are more likely to be understood by medical personnel, even if they know nothing about CFS.  As soon as he saw Jamie's medical history and list of medications, he told us he would be doing Jamie's surgery in the hospital rather than in his office as he usually does. 

There were two reasons for this.  In the hospital, Jamie would get IV fluids which would greatly help to prevent OI symptoms, especially after fasting before surgery.  Secondly, the anesthesia typically used for oral surgeries, nitrous oxide, is a vaso-dilator, as Dr. Lapp explains in his article.  This means that it dilates the blood vessels, a very bad thing for someone with OI, making it even more difficult than usual for the body to properly circulate blood to the heart and brain (it's the same reason alcohol makes us feel sicker; it is also a vaso-dilator).

If you find that your surgeon or anesthesiologist is not so understanding or doesn't want to take the time to read the article (as was the case with our anesthesiologist this time), try saying something along these lines:

"The two most important considerations are IV fluids and avoiding vaso-dilators." (if you are unusually sensitive to medications, I would include that as a third point).

So, I thought the surgery itself went well, despite the resulting crash.  Jamie hasn't had severe OI symptoms since surgery, including less than his usual aches, so I do think the IV fluids helped.  I'm not sure there's anyway of preventing the immune system from over-reacting due to the stress.

Just keep your fingers crossed - tomorrow is his first day of school, and I really hope he is able to attend.

Hope you find these guidelines helpful if surgery is in your future.

Movie Monday 8/29

Well, we survived the hurricane, and Jamie came through his oral surgery this morning just fine.  We are hoping that the IV fluids he got in the hospital will help prevent a severe crash - time will tell.  He's got a sore throat and swollen glands, so that's not a good sign.  He's in a lot of pain now but enjoying his smoothie.  I will post again tomorrow about tips for people with CFS having surgery.

For today, how about a more fun topic?  Movies!  Since I skipped last Monday, today's post will cover two weeks.  We actually didn't watch a lot of movies partly because it's been so hectic here and partly because the kids are still totally hooked on watching old episodes of Bones!  It's a great series with a wonderful sense of humor.  As for movies:

• A couple of weeks ago, we watched Alice in Wonderland, the new version.  It was pretty much just what you would expect from a collaboration between Tim Burton and Johnny Depp: really, really bizarre!  We all enjoyed it - a very creative, colorful production, a totally new approach to Alice.
• We also watched The Truman Show starring Jim Carrey with the kids.  Ken and I had seen it many years ago, and the boys both loved it.  It's just such an ironic, insightful look at our voyeuristic society.  And talk about premonition!  One year after the movie was released, the first reality TV show, Big Brother, premiered.
• During the big sleepover this weekend, Ken and I watched The Hereafter, starring Matt Damon.  I've wanted to see this movie ever since it was released into the theater.  As its title indicates, it's about the afterlife.  There are three separate stories that eventually come together: Matt Damon plays a psychic in San Francisco who can sense messages from people's dead loved ones; there's a young boy in England who suffers a crippling loss; and a well-known TV journalist in France who has a near-death experience while on vacation.  I loved this thoughtful and thought-provoking movie!

Have you seen any good movies lately?

From Anxiety to Hope

Sorry I have been absent for over a week.  The hurricane coming through was the most relaxing part of my week!  Out of 5 days, I was out of the house and on my feet for 4 of them, including an all-day college visit, a massive shopping trip, and a trip back and forth to NYC.  I didn't crash until Friday evening, after NY, when I felt like someone had beat me up.  I mostly rested yesterday and am feeling fine again today.

But today's post isn't about me; it's about our 17-year old son, Jamie.  I've mentioned a few times recently that he's had a really rough summer.  It appears to be mostly due to herx reactions from his treatment of Lyme disease, plus two other tick-borne infections, babesia and bartonella.  Whatever the reason, the bottom line is that he has spent most of the summer lying on the couch in our family room, reading and watching TV.  He got his full, unrestricted driver's license this summer, but he barely drove at all.  He hardly saw any friends all summer either.

So, my husband, Ken, and I have been extremely worried about school starting next week.  The anxiety has been building because in his current state, there's no way he'd be able to attend school full-time as he has in recent years.  This is his senior year, so we have the added pressure of applying to colleges.  We've been visiting them this summer, all the while wondering how on earth he'll be able to manage it.

Another source of anxiety was his annual check-up with his pediatrician last week.  Jamie has only grown a quarter inch taller in two years and moved from the 90th percentile for height (where he'd been consistently since birth) to the 50th.  It's been proven through research that people with CFS generally secrete less growth hormone (GH) than healthy people because GH is secreted durng deep stage 3 and stage 4 sleep, of which we rarely get enough.  So, all this anxiety has been building, and we've been dreading the coming week when school starts again.

We are all feeling a lot better now, though, thanks to our visit to see Dr. Levine in NYC on Friday and some e-mail correspondence with Dr. Rowe.  Both of them have been immensely helpful!  This was the first time Jamie had seen Dr. Levine, though I have been her patient for about 5 years.  She's an Infectious Disease doctor who specializes in CFS and is on the CFS Advisory Committee for the Department of Health and Human Services.  I decided to take Jamie to see her because most of the treatments that have helped me the most have come from her.  We left with a whole list of treatments to try for Jamie, to help to control his out-of-control symptoms (mostly aches and exhaustion) and try to improve his stamina:

• Dr. Rowe suggested we try a new medication, clonidine, that is OK to take with Jamie's current medications and, if it is tolerated, can potentially help with sleep dysfunction (in addition to his current treatments for sleep dysfunction which help though he is still not getting enough deep sleep), Orthostatic Intolerance (currently treated with salt and Florinef though again he's gotten worse lately), and can help the body to secrete more growth hormone as well.  A triple bonus!
• Dr. Levine agreed to start him on weekly saline IVs.  This is becoming a common practice, particularly with teen patients, and is something else Dr. Rowe frequently does.  The IV usually has an immediate positive effect, increasing blood volume much more effectively than just drinking salt and fluids and improving OI, thus improving most other CFS symptoms (many of which result from OI).  Another local friend who goes to school with Jamie is starting the same thing next week, so his parents have already paved the way for us and found a local doctor willing to administer the IVs.  Obviously, this is only a temporary effect, but from what I've heard form others, it can really help for a few days afterward.
• Dr. Levine will probably also start Jamie on low-dose naltrexone (LDN) which has helped me quite a bit.  This was the #1 thing I wanted to ask her about for Jamie and was her first suggestion, so we were both on the same page with that one!  She took blood for lots of tests on Friday, but Jamie's previous tests a few years ago showed very low Natural Killer cell function, which LDN can help with.
• Finally, she will call us when his blood test results come in to discuss whether those present any additional treatment opportunities.

Jamie and I left her office on Friday in good spirits.  After months of worry and anxiety, we now have some hope.  Three treatments to try (and perhaps more) means three opportunities for improvement and a much more optimistic view of the coming school year.  I was interested to hear what Jamie thought, since Ken and I have been trying to hide our anxiety from him.  He told me over lunch that he's been feeling all the same anxieties and worries over all the same issues (duh! of course he has!), so he was also greatly relieved and feeling hopeful that we now have some options to try.

So, all of this has reminded me of a couple of truisms that I seem to keep relearning over and over again.  One, that it's always best to get things out in the open and talk about them.  And, two, that the best approach to CFS treatment is to persevere and keep trying.  If one thing doesn't work, move onto the next...try, try again.  Despite what we sometimes hear, there are actually lots of options for treating CFS, even though we don't know its cause yet.  Different things work for different people, and we just have to keep trying.  To that end, I will write the post I have been promising, about what has worked best for me and allowed me to be so active this summer.  With school starting this week, my writing time will increase exponentially!

Even the hurricane this weekend worked in our favor.  School has been canceled for Monday for my youngest son, pushing back the day when Seniors start to Thursday.  This will give Jamie an extra day to recover from oral surgery (assuming it's not canceled tomorrow).  He's having all four wisdom teeth out.  Fortunately, it's being done in the hospital, so he'll get IV fluids (he may actually feel better than he's felt in weeks, other than the pain in his mouth!).

Hope is a powerful thing.

Another Exhausting Week

I just don't have the mental energy to write a flowing, cohesive blog post tonight, so how about a rambling, disjointed one? (it just took me 10 minutes to think of "disjointed").

Another really exhausting week here, and Jamie and I are both in rough shape today.  These last two weeks before school starts are packed full for us, mostly with medical appointments, including several out of town.  So, this week, we started Craig's physical therapy (old knee problems we want to tackle before soccer season), got up early for Jamie's annual well visit, and drove to NJ and back for a visit with our Lyme doctor.

It seems that Jamie reacted badly to the two booster shots he got on Wednesday because he's been badly crashed ever since.  We didn't know what was going on until last night when we noticed a big, red swollen bump on his arm.  He had no reaction at all a couple of years ago to his meningitis shot, but he reacted badly to the booster this week...probably because his immune system is struggling now against Lyme plus two co-infections, in addition to the CFS.  So, he's been in bad shape the past two days, exhausted with severe aches.

Normally, Jamie helps drive back and forth to NJ (about 90 minutes each way), but yesterday he felt so bad that he rode in the backseat lying down.  And we usually enjoy lunch at Panera before we head back home, but this time, we just drove there, had our appointment, and got right back in the car to drive home again.  By the time we got home, I was pretty exhausted, too. 

My other problem is that I haven't been sleeping well this week - that's probably my main problem.  I think one of my new meds (Immunovir) was overstimulating me and disrupting my sleep.  It does seem to give me more energy and cut down on crashes, though.  So, I reduced the dose yesterday and slept a lot better last night.  Hopefully, I've got that straightened out now.

We both need to rest and recover this weekend because next week is even worse - blood tests for both boys Monday morning, more PT for Craig, a college visit Tuesday, an orthodontist appointment, Meet the Teacher night, and a trip to NYC for Jamie and I to see another doctor.  The following Monday morning, Craig heads back to school, and Jamie gets oral surgery at the hospital to get all four wisdom teeth removed.  The fun just goes on and on!

Time to chill out with some TV with my family...enjoy the weekend!

A Long Journey

We went away this weekend on a short vacation with my extended family to the Poconos where my mom and her husband have been living.  We only had to drive about 3 hours each way to get there and back, but it was light-years away from earlier family vacations when I was first sick.

There were 14 of us all together - 8 adults and 6 kids, sharing one house and all of our meals.  We had a similar vacation together in the Adirondacks six years ago.  In fact, I brought along a bunch of home movies and photo DVDs this weekend, and we watched a slideshow of that previous trip.  As everyone else in the room exclaimed in delight and said, "Wasn't that the best vacation ever?" I just kept my mouth shut.  That week stands out in my mind as the worst week of my entire life.

I was the sickest I have ever been, before or since.  I had tried to warn my mother that I wasn't up to a full week with family, but she took it personally and insisted we come.  By the evening of the first day there, I was plunging into the worst crash I have ever experienced.  I spent three days in bed, not even able to read, doing nothing but lying in the dark with my eyes closed.  I barely made it out of my room for meals.  I tried to be personable, but I was just so horribly sick.  I really thought I wouldn't survive the week.  This was early in my illness when all of my family was in deep, deep denial about how sick I was, so they all just pretended everything was fine.  It was a nightmare.

Contrast that to this past weekend...I had a great time and was able to participate in almost everything.  I helped with meals, went to the beach with everyone, paddled my son's kayak, and played games with the kids.  Sure, I still had to respect my limits - I took my daily nap, went to bed by 10 pm, and had to rest up a bit on Saturday morning after an active Friday - but I felt well enough to truly enjoy the vacation.  And it is so wonderful to see my kids having so much fun with their cousins, building bonds that will last a lifetime.

The best part of all?  Saturday night after watching some old home movies and telling stories of past escapades, we all laughed so hard there were tears pouring out of my eyes and I couldn't catch my breath.  There is nothing more rejuvenating than laughing until your stomach muscles hurt!  I felt as if I had my family back.

I have come a long, long way from those early years. 

Yeastie Beasties

Another busy week with no time for blogging!  We have a long weekend coming up with my extended family, so lots of work to do to get ready and packed.

I'm way behind here.  I've been meaning to bring you up-to-date on all sorts of things here, including our current battle against yeast overgrowth.

As you know, Jamie and I both have Lyme disease as well as ME/CFS.  In fact, Jamie has 3 tick-borne illnesses: Lyme, bartonella, and babesia.  So, we have both been on heavy-duty antibiotics for a long time (a year for Jamie and almost three years now for me).  Since antibiotics kill off all kinds of bacteria - both the good stuff in the intestines as well as the bad stuff - yeast overgrowth is always a possibility.

I've had almost three years on high-dose doxcycline with no signs of trouble at all.  I doubled my dose of probiotic when I started the antibiotics, and that seemed to do the trick for me.  I also take oregano and olive leaf, both of which are potent anti-fungals (as well as anti-virals and antibiotics).  Then, two weeks ago, I added another antibiotic, Flagyl, and within a few days, I noticed thrush on my tongue! 

As for Jamie, he has struggled with yeast overgrowth for at least 6 months.  I think his time on high-dose Zithromax is what did it (though it did help with his bartonella).  We noticed on our vacation in June that the thrush in his mouth had gotten pretty severe.  He was also experiencing other symptoms that our Lyme doctor told us were due to yeast overgrowth (terrible aches in his legs and weird itchiness on the undersides of his arms).

So, here's what we are taking each day to help combat yeast overgrowth:

• 4 Culturelle (a probiotic, contains lactobacillus)
• 4 Saccharomyces Boulardii (a probiotic that specifically targets yeast, recommended by our Lyme doctor)
• 4 New Chapter All-Flora - me only (my usual probiotic, includes 9 varieties, non-dairy)
• Olive leaf extract (4 for me, 2 for Jamie)
• 2 ADP (emulsified oregano)
• Drinking clove tea (me only, a friend recommended it)

With all of that, it still wasn't going away.  Jamie's improved a lot, but there was still some mild thrush.  I expected mine to go away easily since it had just started, but it's only slightly better.  So, last Monday, I called the Lyme doctor, and he also prescribed:

• 100 mg Diflucan, a prescription anti-fungal, for both of us.

Jamie's continues to get better.  Mine is still hanging in there!

So, that's our latest battle.  Just what we needed, more bugs to fight, right?  I'm interested to hear about others' experiences with yeast overgrowth, and would love to hear any tips on how to get rid of it.

Movie Monday 8/8

Monday again already?  We had a fairly busy weekend - yard work, birthday shopping, sleepovers.  I did manage to help out with both the yard work and the shopping, with no apparent payback, so that's a very, very good thing.  As for the yard work, using my heart rate monitor really helps me to stay within my limits.  Without it, I know I would have overdone and crashed.

On the good side, Ken is home this week and not traveling to Texas (where he has spent the past 3 weeks!), and we did find some time to relax and watch some TV shows and one movie:

• With Craig at a friend's house Saturday night, and Jamie having two friends sleep over here, Ken and I found time to watch a DVD.  We saw A Dog Year starring Jeff Bridges (thanks for the recommendation, Renee!).  It's an HBO movie, fairly short, and enjoyable.  It's based on the memoir by Jon Katz, an author whose life was falling apart until he rescued a dog.  
• With the kids, we continued our summertime tradition of catching up on TV shows on DVD - finished our Glee Season 1 marathon when Ken got home, watched more of The Mentalist Season 2, Num8ers Season 1, and lots of Bones, both Season 1 and Season 3.  All are great shows!

Have you seen any good movies lately?

(If you are also interested in what we are reading this week, check out the Monday post on my book blog.)

New Website on Latest ME/CFS Research

Sigh...here we are at Friday again...another week where I scarcely found time to write a blog post!  Summer is just so very busy for me, with my kids at home every day, plus my husband has been traveling every single week for business this past month.  It's taking all my energy just to keep up with the day-to-day stuff.  I took my laptop to the pool a couple of days ago, hoping to catch up a bit, but was just too worn out to do anything but lie in a lounge chair and read.  I am devoting this morning to some catch-up work!

Anyway, this post is long overdue.  At the end of May, the CFIDS Association of America officially launched its new website, Research 1st.  It's intended to provide a one-stop shop for everything related to ME/CFS research - the latest news, summaries of important studies, media coverage, and useful links.  The CAA asked me to be one of their initial reviewers of the new site, but with my 2-month long bout of bronchitis and our vacation, I never got to it until this week (bad blogger).

So, I have finally taken a look at the new site, and I am very impressed.  There is a wealth of information there, and it is well-organized.  It has become very difficult to keep track of all that is going on with ME/CFS research (in some ways, that's a good thing!) with all the controversies, increased media coverage, and so many different potential areas of study in this complex illness.  The new Research 1st site is a great place to go to get the latest information, to read more about specific areas of research, and to find out what's new in the field, all delivered in a very factual, unbiased way. 

Here are some of the features that I found most informative:

• A comprehensive list of studies currently recruiting ME/CFS patients (note that some of the current studies are even being conducted by e-mail and phone, making it possible for anyone to participate);
• A link to Dr. Daniel Peterson's new ME/CFS research foundation and its first two studies;
• A summary of all of the major XMRV studies to date;
• A very comprehensive summary of completed ME/CFS research studies (if you are feeling like nothing is happening in ME/CFS research, just read through some of these summaries!);
• The Research 1st Blog, a great way to stay up-to-date on the latest ME/CFS news.

I will definitely be using this new website a lot, and I have signed up to follow the blog.  Maybe that will help me to keep up a bit better than I have been this summer!  Check it out for yourself.

Movie Monday 8/1

I am determined to post Monday's post on Monday instead of Tuesday this week! (cutting it close, though).

Well, life has returned to normal here - there are currently 4 teen boys in our living room, playing video games and yelling, and I just fed all of them (did it smart and ordered pizza tonight!).  The house looks like a tornado came though it (like I said, back to normal).

Ours boys had a fabulous time on their grandparents' sailboat, as they do every summer - that's a photo Jamie took near Block Island, Rhode Island.  I did enjoy my quiet time, but it's good to have them back.  I watched quite a few movies last week - let's see if you can figure out at which point Ken came back home by the movie selection!

• I watched Bonneville on Monday, even though it was a bit late for a movie (I stayed up too late every night last week!).  I loved this movie about three old friends who go on a cross-country road trip together to scatter the ashes of one woman's husband, starring Kathy Bates, Jessica Lange, and Joan Allen.  It was warm and funny and highly recommended.  Besides, it's a road trip movie!  You know how I love my road trips.  Watching this got me feeling so nostalgic, I got out our old photo albums from some of our first road trips with the kids (to some of the same places visited in the movie).
• On Wednesday when I stayed in to just rest and recover from a busy week, I watched Eat, Pray, Love starring Julia Roberts, about a woman who embarks on a year-long journey to Italy, India, and Bali to try to find the balance she is missing in her life.  I had read the memoir and enjoyed it, and I thoroughly enjoyed the movie adaptation as well.  Perfect viewing for a night when I was trying to remember that sometimes I just need to take care of myself.
• Thursday evening, we watched Buffalo Soldiers starring Joaquin Phoenix as a bored American soldier stationed in West Germany before the Wall fell and Ed Harris as his kind but oblivious commanding officer.   In their boredom, Joaquin and the rest of the soldiers have set up a thriving business with the German black market, selling anything they can get their hands on, but they get in over their heads when they try to sell weapons to a mafia leader.  The DVD box kept saying how hilarious the movie is...and it does have its funny moments, but it's a very dark kind of comedy.  I don't know if I'd call any movie hilarious where just about every single character is dead by the end (I'm not saying which ones survive!).  So, it was definitely dark but also funny and interesting - we enjoyed it overall.
• Redbox gave me a free rental for my birthday this month (how nice!), so we celebrated our last quiet night alone together Friday with Unknown, starring Liam Neeson.  It was excellent, an exciting thriller about a man who travels to Germany (yes, odd that we watched two movies in a row set in Germany) with his wife to attend a conference.  He gets in an accident in a taxi and when he wakes in the hospital after a few days, he discovers that someone else has taken his identity and his place.  It's an intriguing premise, and neither of us saw the twist coming (and Ken always guesses this stuff!).  I almost felt guilty for watching it without the kids because Jamie would have loved this one! 

Oh, and once the kids came home Saturday night, we spent the rest of the weekend in a Glee marathon, trying to get through the entire first season set of DVDs before they are due back at the library - love that show!!

Have you seen any good movies lately?

(If you are interested in what we are reading this week, check out the Monday post on my book blog.)