Monday, January 30, 2012

Movie Monday 1/30

Another rough week here, living the ups and downs of the CFS rollercoaster life!

Jamie ended up home and crashed all last week again, but he finally went back to school this morning, after three weeks on the couch.  He still has very low stamina and energy, but it is good to see the spark back in his eyes.  And, today, Craig was home sick from school!  Hopefully, it is just a crash from doing too much this weekend, though he is still feeling awful tonight.  I wonder whether I will ever again experience a quiet day of solitude when I can get some work done!

Poor Jamie has no social life right now.  He's a 17-year old senior in high school, and instead of running around with his friends, he is hanging out in the family room with his parents.  But watching a good movie is a highlight for him right now, so we enjoyed a couple with him this weekend:
  • Craig had two friends sleep over Friday night, so Ken, Jamie, and I watched Abduction, starring Taylor Lautner of Twilight fame (or so I've heard).  It was an engaging thriller.  The main character, a high school student, discovers his own picture on a website for missing children during a research project for school.  He and his neighbor/classmate embark on a mission to uncover the truth about his background, but things quickly get dangerous, and they have to go on the run.  We all enjoyed this fast-paced action movie!
  • Saturday, Craig went to a movie birthday party (once again, he is the only one in the house with a social life!), so Ken, Jamie, and I watched The Debt, a spy thriller starring Helen Mirren.  Her character is a retired Mossad agent who, along with two colleagues, helped to track down a renowned Nazi war criminal back in the 60's.  They became famous for their success, but now, in the present day, history is finally catching up with them as they are forced to revisit their past.  This was an excellent movie, with a chilling, thought-provoking plot.
Have you seen any good movies lately?

Wednesday, January 25, 2012

The Boring Sameness of Crash Days

My teen son, Jamie, and I have both been crashed this week.  Turns out we both had a mild fever yesterday, so I guess we were exposed to some sort of virus.  What luck, huh?  Jamie only made it to school one day last week and figures he picked up a virus then.  It's been a very difficult winter for him so far.

I was actually excited yesterday to discover we had fevers.  I took him into the local clinic to get his weekly saline IV, in the hopes that it would perk him up a bit, and the doctor found the fever when he was taking Jamie's vitals.  It was only 99.5, but his normal temperature is only about 97.5, so that counts!  At least now we know why we both feel bad this week.  Exposure to a virus can cause a nasty crash, but now we know Jamie's is probably not due to some very mild exertion this weekend, and mine is probably not due to my Lyme disease coming back (I have been paranoid about that possibility!)

I am getting sick and tired of lying in the family room in sweats, unshowered, unable to get much done, and listening to the TV all day long, as I'm sure he is, too.  It's that dull, boring sameness that gets to me after a while, and the cold, gray weather outside only adds to the dull, dreary mood inside.  We have pretty much watched every TV show available on demand that we have any interest in, plus quite a few on DVD as well.  I have been trying to get a little done on my laptop while lying down because I really hate to feel unproductive, but it is frustrating not to have my usual motivation and drive.

I shouldn't be complaining because crashes lasting more than a day are rare for me now, and I'm not severely crashed this week...just feeling crummy enough that I know I can't manage getting groceries or much cooking or most of the items on my to-do list.  So, I am trying to stay in good spirits and make the best of this time with Jamie, though I know he is itching to get up and moving, too.  I managed to scrape together one more meal from the freezer tonight, and Jamie actually got up off the family room couch a few minutes ago to go down to the basement (and lie on the couch down there) and play a video game with his brother - that's a really big deal!!  I can hear them laughing down there - there is no sweeter sound.  And while he's down there, I get my beloved couch back temporarily!

So, we are trying to make the best of yet another week spent horizontally.  Hopefully, we will both recover soon and get back to real life.

How do you make the best of crash days?  How do you keep your spirits up when the dull sameness sets in?

Tuesday, January 24, 2012

New ME/CFS Study Looking for Participants

This weekend, Dr. Levine told me about a new ME/CFS study looking for participants (Dr. Klimas is also involved).  Unfortunately, I don't qualify for this one, but I offered to post the requirements here to try to help find more participants.

This new study will be looking into infectious agents related to ME/CFS, a very worthy purpose!  The study is in need of both ME/CFS patients as well as age-matched controls.  Here are the requirements for ME/CFS participants:
  • Age between 18-65
  • Must live within 100 miles of NYC
  • Must be off all antibiotics and antivirals for at least 3 months (possibly 6 months for antivirals) - the study will be recruiting patients all year, so there is time to go off these meds, if you want to, though, obviously, the doctors don't want you to go off meds just for the study if it will affect you adversely.
  • The study is particularly interested in recent onset, within 3 years, though I believe those who've been sick longer can also be included.
  • Abrupt onset or gradual onset is fine.
  • Study is especially interested in patients who are at least 50% disabled, i.e. able to function at only 50% (or less) of how you functioned before getting sick.
  • If you can also supply your own age-matched control, even better! 
All that is required is a brief questionnaire (either online or over the phone) plus one visit to Dr. Levine's office in NYC for blood and tear samples.  ME/CFS patients get $100 for participating; controls get $50.

Even if you don't qualify as a patient, if you have a family member or friend interested in helping ME/CFS research as a control (within 100 miles of NYC), that would be helpful as well.

E-mail Dr. Susan Levine if you and/or a healthy control are interested in participating.

Monday, January 23, 2012

Movie Monday 1/23

I'm actually glad it's Monday today, despite the dark, wet, gloomy weather.  We spent most of the weekend working hard (and making no progress!) on financial aid forms, scholarship applications, and tax preparation.  Ugh.  The bright spot in our weekend was a gathering Saturday evening with our local group of teens who have CFS and their families.  Even though I was tired and feeling a bit down, it was a nice respite to just hang out with our friends.  As Ken said, we just feel so comfortable with that group - there is no explaining to do!  And it was great to see all the teens laughing, teasing, joking...basically being regular teens.

Our only other bright spot in the week was movies!
  • Jamie had more sick days last week, so one day, I cheered him up by borrowing Knight and Day from the library.  It's an action movie with plenty of laughs and even a bit of romance.  Tom Cruise stars as a federal agent on the run, and Cameron Diaz is his unwilling partner/sort of hostage.  It keeps you guessing as to whether Cruise is a good guy who's been framed or the bad guy that the rest of the Feds say he is.  Jamie and I both enjoyed it.
  • Friday night, Craig slept over at a friend's house, so Ken, Jamie, and I watched Unstoppable.  I'd gotten it from the library weeks ago, but the boys kept saying it looked boring...just the opposite!  It's based on a true story about a runaway train in Pennsylvania.  Denzel Washington is great as an engineer with decades of experience who's being forced into retirement, and Chris Pine (who played the young Captain Kirk in Star Trek) co-stars as a rookie conductor having a really bad first day on the job.  The movie was great but high tension from beginning to end!  If you have trouble handling adrenaline rushes, it's best to pass on this one - I definitely should have taken an extra beta blocker before I watched it!
  • Last night, Craig went to a comedy show with a friend (can you see who has the busy social life in our house?), so Ken, Jamie, and I watched Moneyball, starring Brad Pitt.  This was also an excellent movie, about how the General Manager of the Oakland A's pretty much transformed professional baseball by analyzing statistics, with the help of a super-smart Yale graduate, instead of managing by gut feel.  This is also based on a true story.  None of us are baseball fans, but we all enjoyed this movie very much.
  • Jamie watched a lot of The Office, Num8ers, and The Simpsons during his sick days last week, and Ken and I have begun watching episodes from season 1 of In Plain Sight, a TV show about the witness protection program.  I think we have found another winner - it's great so far!
Have you seen any good movies lately?

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

Wednesday, January 18, 2012

Treating ME/CFS With Imunovir

In my post last week on immune system abnormalities in ME/CFS, I promised to follow-up with information on Imunovir, a prescription medication that has helped me improve over the past year.

Remember I explained that ME/CFS is neither an immune deficiency nor an auto-immune disease?  Parts of our immune systems are over-active and other parts are under-active.  This means that suppressing the immune system with steroids (as is often done with auto-immune diseases) won't work for us, and stimulating the entire immune system is likely to make us feel even worse.  What we need is an immune system modulator, something that will help re-balance our immune systems, restoring the normal Th1-Th2 balance that we are missing.

I learned this fairly early in my illness, but there didn't seem to be many options available for treatment.  I tried many herbal supplements over the years that were supposed to be immune system modulators (various types of mushroom blends, for instance), but I never noticed any improvement.  I learned about Imunovir years ago, but since it is not sold in the US, I thought it was unavailable to me (my primary care physician didn't feel comfortable prescribing something not available in the US).  Then, last year, my Infectious Disease/CFS doctor suggested trying Imunovir - I was thrilled to have a chance to try it after all these years!

It turns out it is fairly easy to get, if you know how.  Imunovir has been used safely in Europe and Canada for decades (it has not gone through the FDA process in the US for political reasons, not safety reasons).  My doctor gave me a prescription that I faxed to a pharmaceutical distributor in Canada.  Imunovir costs $100 for about a month's supply (dosing varies), and there is a $30 shipping fee, but my insurance covers Immunovir at 70% (I have to submit the receipts after I get it), and I can reduce the shipping fee by ordering several months' worth at a time.  A friend has told me there is a cheaper generic version (slightly different but similar), but I don't have any details on that.

Dosing of Imunovir is fairly complicated.  Apparently, immune system modulators work best by pulsing the dose; a steady dose stops working after a while.  I have read all sorts of complicated dosing schedules online, but my doctor suggested a schedule used by Dr. Nancy Klimas, a renowned CFS specialist and researcher: Start with 1 tablet (500 mg) twice a day for the first week, then go up to 2 tablets twice a day for 3 weeks, then increase to 3 tablets twice a day (6 total).  In all cases, take Imunovir Monday through Friday and take none at all on Saturday and Sunday.  I have read that Dr. Cheney (another renowned CFS doctor) also suggests changing the dose each week and taking it for 2 months, then taking an entire month off.

When I tried to go up to the maximum dose of 6 tablets a day, I had some side effects.  I found that taking 2-3 tablets late in the day left me overstimulated and unable to get to sleep.  I backed off to 4 per day, taking 2 in the morning and 2 in the afternoon, but then I had some mild immune symptoms (sore throat and aches) after going so long without any overnight and then taking 2 in the morning.  So, I have finally settled on my own dosing schedule:  1 with breakfast, 1 at mid-morning, 1 with lunch, 1 after my nap (weekends off), and it seems to be working well for me.  To mix it up, sometimes I take only 2 pills a day for a week.

As I explained in my earlier post on my improvement last year, I felt better overall last year, with improvements in energy, more good days, and fewer crash days.  Some of that improvement was due to beta blockers and some was due to Imunovir, and it's hard to completely separate the effects of the two for me.  Some signs that my immune system is functioning more normally include: fewer crashes, crashing less frequently when one of my kids is exposed to a virus, and a significant reduction in allergy symptoms.  I need to go back and quantify the allergy improvement, but it just occurred to me recently that a year ago, my allergies had ramped up significantly and now they are back to being mild.  Also, I typically feel the worst in the winter, when there are lots of viruses floating around causing me to crash, but I haven't seen that worsening this year.  I also believe the Imunovir has helped me to feel more energetic.  I feel more physically and mentally alert now and only have that no-energy, no-motivation, can't-think-clearly feeling on rare bad crash days.

I also believe that Imunovir may have helped me to finally get rid of the Lyme disease I've been fighting for the past three years.  With our reduced response to infections, people with CFS tend to have a very difficult time getting rid of Lyme disease and its co-infections completely.  I don't know for sure yet whether I am truly rid of Lyme (see my earlier post), but I am off my Lyme meds for the first time in years and so far, so good.

So, I plan to continue to take Immunovir and also want to try it for my son, Jamie, who - as most of you know - has been struggling horribly with his Lyme treatment this past year.

One way to quantitatively measure the health of our immune systems is by measuring Natural Killer Cell function, which is typically low in people with CFS, due to that Th1-Th2 imbalance.  I just realized I haven't had mine tested recently, so I will ask my doctor to check mine (which has been historically low) the next time I see her.

Once again, please remember that I am not a medical professional, and the information presented here is just a summary of my own experience and the understanding I have gained from reading research.  If I have made any technical mistakes here, please let me know, and, as always, talk to your own doctor about your own unique circumstances.

(NOTE: In an earlier version of this post, I had misspelled Imunovir as Immunovir.  I am including this note in the hopes that a search engine will still find this post, despite my mistake).

Monday, January 16, 2012

Movie Monday 1/16

Whew...lots of ups and downs last week and this weekend.  Jamie finally made it to school for a few classes at a time last week and managed a full day on Friday, though his energy was still very low. 

Craig turned 14 on Friday!  We celebrated by taking two of his friends along to the Poconos for the weekend.  We stayed in my mom and her husband's condo which is literally steps away from the ski lift.  The three younger boys spent all day Saturday snowboarding and skiing and had a blast!

Jamie wasn't feeling well enough to join in the outdoor fun, and on Sunday, he got a stomach virus - guess he picked it up during his brief time at school last week.  Poor kid was shaking with fever and chills just when it was time for our 3-hour drive home.  He's doing a tiny bit better today and hopefully will recover more fully by tomorrow.

So, it was a busy week without much time for movies, but here's what we fit in:
  • Last night and tonight, with Craig exhausted from snowboarding and Jamie sick, we hunkered down in the family room and watched Pirates of the Caribbean: At World's End (it was almost 3 hours long, so took us 2 nights to finish!).  It was good, like the others in the series, with lots of action, big pirate battle scenes, and a good sense of humor.  This one had a very complicated plot.  The kids loved it.
  • I forgot to mention last week that Ken and I watched Larry Crowne after the kids went to bed.  I was thrilled to watch something other than an action flick for the first time in months!  It's tough being outnumbered 3 to 1 as the only female in the house.  Ken and I both enjoyed it very much - a sweet, funny story about a middle-aged good guy (played by the ultimate good guy, Tom Hanks) putting his life back together and falling for his pretty but messed-up teacher, played by Julia Roberts.
  • On Saturday, I kept Jamie company in the condo watching lots of episodes of Modern Family (we gave the kids the Season 1 DVDs for Christmas) which had us laughing like crazy and kept our spirits up.
  • Today, Jamie kept himself laughing with episode after episode of The Simpsons (Season 6).
Have you seen any good movies lately?

Wednesday, January 11, 2012

Immune System Abnormalities in ME/CFS

(NOTE: Many of you expressed interest in hearing more about how Imunovir/inosine has helped me this past year, so I started to write a blog post about that, but I quickly discovered that I needed to explain how ME/CFS affects the immune system before I could explain how inosine treats it. It's just too much for a single post. So, consider this Part 1, and you can read about using inosine as a treatment here. It's been very effective for my son and I.)

My Story
Within the first year of getting sick, before I even had a diagnosis, I knew that some sort of immune system problem was at the heart of whatever this mystery illness was. I saw the same pattern, over and over again, with recurring symptoms like sore throat, flu-like aches, and congestion, but it was obvious these weren't colds - the symptom pattern was exactly the same every time, signaling the start of another relapse (you learn to instinctively call them crashes pretty early - it's the perfect description). One Infectious Disease doctor told me I was just catching a lot of viruses, but I had never in my life had two viruses that were exactly the same, and now I'd had a half dozen in a year. I could predict what symptoms would occur day by day. The only thing that made sense was that my immune system wasn't working correctly.

When I finally got my diagnosis of ME/CFS, a full year after getting sick, I was hungry for information and devoured everything I could find about ME/CFS--in books, on websites, and through the other people I was gradually finding online. I discovered that my instincts had been correct and that a dysfunctional immune system is at the heart of ME/CFS. Although the exact cause of ME/CFS is still not known, its immune system abnormalities have been documented in dozens of research studies. Most experts agree that in most cases, there is some sort of infectious agent that triggers immune system dysfunction and that the dysfunctional immune system is the engine that sustains the illness and causes a cascade of domino effects in the endocrine and nervous systems that lead to our substantial and disabling symptoms.

Why Immune Dysfunction in ME/CFS is Unique
Most illnesses of the immune system fall into one of two categories.  There are deficient immune system, like AIDS, where the immune system is suppressed and doesn't respond properly to infectious agents. On the other side, there are auto-immune diseases, like MS, lupus, rheumatoid arthritis, and others, where the immune system is over-active and not only over-reacts to infections but also attacks the body itself. Unfortunately, ME/CFS does not fit neatly into either of these categories. This means that established treatments for the two main types of immune problems, such as treating auto-immune disease with steroids, don't usually work for people with ME/CFS.

One of the most fascinating things that I learned in that second year of illness was that ME/CFS has characteristics of both types of immune system disorder: parts of our immune system are over-active and parts of it are under-active. This is sometimes referred to as a Th1-Th2 imbalance or a Th2 dominance. Now, AP Biology was many years ago for me, so I'm no expert, but here is my understanding from what I have read. The Th1 and Th2 referenced above refer to two different types of T-helper cells, part of the immune system. Th2 cells generally respond to viruses and allergens, among other things, while Th1 cells respond to bacterial infections (among other things).
Note that there is not complete agreement among scientists and experts on the role of Th1 and Th2; some sources say that Th1 are responsive to viruses and Th2 to bacteria. I have stuck with this explanation here because our own personal experience fits this theory perfectly; however, it might be different for you.
ME/CFS is thought to be characterized by an imbalance, where our Th2 cells dominate. This means, in simple terms, that when someone with ME/CFS is exposed to viruses or allergens, our immune systems over-react, creating the kind of cold or flu-like immune response I described above, all signs that the immune system is responding (even in a healthy person, most viral symptoms are caused by the immune system response, not by the virus itself). This is why just being exposed to someone else's cold can cause a severe crash, even though we don't actually "catch" the cold and why many of us have problems with allergies and food intolerances that we didn't have before ME/CFS.

On the other hand, with fewer Th1 cells around, our immune systems under-react when exposed to bacterial infections. This is why people with ME/CFS are extra-susceptible to sinus infections,  bronchitis, and other secondary bacterial infections. For instance, my son and I rarely catch colds, but if one of us got even a bit congested, we would quickly develop bacterial bronchitis, requiring treatment with antibiotics. (I am using past tense because treatments to normalize our immune systems have greatly improved this problem; we used to each get bronchitis 4-5 times a year, and now we each get it only every 18 months-2 years!)

This also explains why those of us with ME/CFS often have bad reactions to vaccines, causing lengthy relapses or even acting as the trigger that starts ME/CFS. It's not the fault of the vaccine: it is doing what it is designed to do, stimulating the immune system to create antibodies. But, with our overactive Th2 cells, we respond with a prolonged immune response (i.e. crash) that would not happen in a healthy person. I have long believed that allergy shots were the trigger for my own ME/CFS for this reason. I have also observed over the years, for both of my sons and me, that our worst, longest-lasting crashes are usually those triggered by exposure to a virus, like when kids at school have colds or my husband gets the flu.

This is a VERY simplified explanation of a very complex process that is happening in our immune systems. There have been lots and lots of research studies detailing dozens of different types of dysfunction in the immune systems of those with ME/CFS, and each of these problems causes other problems, in a cascade of cause-and-effect. People with ME/CFS generally have low Natural Killer Cell function and all sorts of problems with our cytokines (where levels of certain cytokines are high and others low). As an example, this study from Stanford looked at the cytokine "signature" in ME/CFS patients, as a way to predict disease severity, and this comprehensive study from Columbia Medical School (which involved a who's who of the nation's top ME/CFS experts) took a look at all sorts of immune system markers in ME/CFS and were able to differentiate between the early stages of illness and later stages.

To Share with Your Doctor
One of the best resources I have seen in all these years is an older but still excellent article written by Dr. Nancy Klimas, published in 2007 in Current Rheumatology Reports, that details all of the known (at the time) abnormalities in ME/CFS patients' immune systems and how these lead to dysfunction in the endocrine and nervous systems. The paper is brief but contains dozens and dozens of references to scientific research studies that document these abnormalities, making it perfect to share with your doctor. I especially like to give this article to doctors who don't understand ME/CFS or don't believe it is real because it provides lots and lots of hard scientific facts on the physiological basis of ME/CFS.  Even though it is older and the science has advanced much further since it was written, it is still a good summary, all in one place. I think this one article alone can change the minds of skeptical medical professionals!  You can look at an abstract of the article online or read or download a pdf file of the entire article (it's 6 pages long).

So that is a very general overview of immune system abnormalities in ME/CFS (please remember that I am not an expert in this field--if you see I have made a mistake in this post or know of other information that might be helpful to others, please share it in the Comments section or send me an e-mail).

So What Can You Do About It?
Since immune system dysfunction is at the heart of ME/CFS, treating it can help to improve all symptoms. Although people with ME/CFS should avoid treatment that either suppress the immune system (like steroids) or "boost" it, there are a few medications and supplements available that can help to modulate or normalize the immune system. This blog post on Treating Immune Dysfunction in ME/CFS includes information both on improving immune function (which should help to improve ALL symptoms) and on treating underlying infections.

The three main treatments that have helped my son and I the most over the years in normalizing our immune systems are inosine, low-dose naltrexone, and glutathione - there are links to more information on all three in that post linked above. All three of those treatments are very inexpensive and easily accessible (inosine is even sold as a supplement) and have tremendously improved our conditions.

Monday, January 09, 2012

Movie Monday 1/9

I'm overdue for a Movie Monday!  We actually ended up watching quite a few movies last week.  Jamie is STILL badly crashed and has been couch-bound since Christmas.  To cheer him up, we watched lots of movies last week (and one the previous week):
  • While visiting my father-in-law in Oklahoma after Christmas, we watched Captain America.  I've kind of overdosed on all these superhero movies lately, but the boys love them.  And this one surprised me - I had no idea that Captain America had anything to do with World War II.  Apparently, his character was created to encourage Americans to be patriotic and buy war bonds.  So, the WWII angle made this movie more interesting than I expected.  We all enjoyed it.
  • When we got home, a DVD I'd requested at the library was waiting for us, Alabama Moon.  It is the movie adaptation of one of our all-time favorite books (see my review) about a boy left on his own after his father dies, and we all enjoyed seeing it come to life on-screen (though of course, the book was better!).
  • At Jamie's request, I also got X-Men: First Class from the library.   You may recall, we've been making our way through all of the X-Men movies.  Jamie'd already seen this one, but he really wanted to share it with the rest of us.  He was right - it was very good and filled in some of the questions left from the other X-Men movies about how they got started.
  • During one of Jamie's sick days last week, he and I watched  a couple of movies on FX: first, High Crimes, starring Morgan Freeman and Ashley Judd, a movie about a woman (Judd) defending her military husband who's been accused of murder.  It was very good, but I really like both Freeman and Judd so that helped!
  • Next, we watched Along Came a Spider, a movie adaptation of one of James Patterson's suspense novels.  I'd seen it before, but Jamie hadn't.  It's another movie starring Morgan Freeman (who is great!), and he enjoyed it.
Have you seen any good movies lately?

Thursday, January 05, 2012

How I Improved in 2011

First an admission:  I am a geek and proud of it!  Yup, I know I'm over-analytical.  I love data!

I knew that I felt better in 2011 than in previous years and was able to do more, but seeing that improvement quantified just tickled me to no end!  So, just in case there are any other geeks like me out there, here are the exciting numbers that prove I have improved...

I rate how I feel each day on a scale of 1 to 5, 5 being severely crashed and 1 being great.  I just jot the number down on a calendar before bed each night, along with any symptoms, and also ratings for my level of exertion and level of stress (since I know these affect me significantly).  I also note changes to medications or supplements on the calendar so I can track whether they help me.

So...drumroll please...I improved from an average of 2.6 last year to 2.4 this past year!  That may not seem like much, but it's a 7% improvement over the previous year and a 12% improvement over two years ago.  Qualitatively, I know that I spend far less time lying on the couch now; I used to have to lie down most of the time most days, and now I only need to lie down when I am crashed...which is much less (keep reading!).

Another way to look at it that I think is more telling is how much time I spent crashed.  From the time I started keeping track 9 years ago, I have averaged between 15-23% crashed each year - that translates to the amount of time I spent severely ill, unable to do anything all day but lie on the couch (a 4 or a 5 on my rating scale).  The annual average is a bit misleading because it hides the really bad months, which occasionally went as high as 50% crashed in previous years.  But in 2011, my absolute worst month was 30% (when I got bronchitis and couldn't get rid of it for weeks), and my annual average was just 10%!  That's a 34% improvement over last year and a 59% improvement over two years ago!  Now that is worth celebrating!

So, you are probably wondering how I managed to improve so much in one year.  It was clearly due to two new medications I started, plus one lifestyle management change:
  • In January 2011, I started taking beta blockers to help treat my Orthostatic Intolerance (yes, you have some form of OI, too, even if you aren't aware of it; it underlies many of the symptoms of ME/CFS in over 97% of patients).
  • In March, I started taking Immunovir, the only immune modulating prescription medication available.
  • I began using a heart rate monitor to help prevent crashes; this might not have had much effect on its own, but combined with the beta blockers, it allowed me to do much more without causing a post-exertional crash.
So, I greatly reduced the number of days I spend crashed on the couch by preventing post-exertional crashes (through beta blockers and the heart rate monitor), and I have greatly reduced crash days due to viral triggers with the Immunovir (which has also helped reduce my allergy symptoms and hopefully - keep your fingers crossed - helped me to finally get rid of Lyme disease).  I will talk more about Immunovir in a separate blog post because it deserves a full explanation on its own.

At the same time, I was able to be more active this year than in previous years.  With the help of beta blockers, I was able to increase my stamina pretty dramatically.  At the start of the year, even a 15-minute walk could leave me crashed the next day, and now, on a good day, I can walk for over an hour (moderately, keeping my pulse rate below my AT) without feeling any negative effects.  I firmly believe that being able to exercise mildly now will further help me to improve my stamina and my overall health.  Just as the bad symptoms can cause a downward spiral, good changes can also cause a positive domino effect.

With all of this, of course, is the caveat that I definitely still have ME/CFS - these are by no means a cure.  I still need at least 9 hours of sleep a night and a nap every afternoon.  I still have to severely restrict my activity level and can only exercise slowly and with great caution.  There are many things a normal, healthy person does every day that I would not even attempt because it would cause a crash.  BUT, I am definitely making progress and doing better than I was a year ago.

So, I am starting out the new year feeling very happy with my progress and very optimistic about the future!  Now if I could only get my son well enough to leave the couch behind.
Hiking in King's Canyon National Park in June 2011

Tuesday, January 03, 2012

New Year, Fresh Start

We are having a less-than-stellar start to the new year, with both boys home sick today, the first day of school after winter break.  Craig's got bronchitis - after 10 days with just sinus congestion but feeling fine, he finally succumbed to a secondary infection yesterday!  Poor Jamie has been badly crashed since Christmas (not that he felt all that good before then but he was at least partly functioning).  We've been trying to adjust his Lyme medications in case this is a herx reaction (and it might be, partly), but I think he is also just reacting to being exposed to Craig's infections.  One of those infuriating times with CFS that you just have to wait out.

Despite these setbacks and disappointments, I feel energized and hopeful.  I always feel this way at the start of a new year, even when I've been severely ill (well, maybe not the energized part).  There's just something about January 1, the beginning of a brand-new year, that makes me feel optimistic, as if anything could happen in the new year.

I love reading January issues of magazines (I indulged in a bit of that during the holidays) - all of those articles about getting organized, losing weight, and starting fresh just inspire me.  I came back from our trip to Oklahoma (visiting my father-in-law) ready to face my never-ending to-do list once again, feeling far less overwhelmed than usual and more positive about my chances of actually getting everything done.

I feel ready to tackle my goals anew: both the old goals that didn't get accomplished last year and also new goals that I feel like I can now tackle.  Since we just came back from out of town, I haven't had a chance to review my goals yet, but I promise to share the health-related ones with you.

I even feel optimistic about ME/CFS.  The pace and quality of scientific research has improved dramatically in the almost-10 years that I've been sick.  There were several exciting new developments in the past few years, and even the ones that didn't pan out provided critical information for future research.

So, Happy New Year!!  Here's to a happy and healthy new year, filled with hope and joy!

Monday, January 02, 2012

Is Today the First Day of the Rest of My Life?

...a life free of Lyme disease?  Well, I hope so, but I'm more than a little nervous.

Jamie and I went to see our Lyme doctor a couple of days before Christmas.  He was pleased with Jamie's progress  - he's moved up from only tolerating one doxycyline pill every 3 days to being able to take one every day.  Of course, he had a bit of a set-back this past week.  He went up to 2 pills a day (the dose he is supposed to take) and has been badly crashed this entire holiday week.  However, his brother has had a cold at the same time, so it's hard to tell how much of this crash is herx reaction and how much is CFS immune stimulation.  He's had joint pain, so at least some of it is herx reaction, so we've backed off on the dose again to one pill a day...that's still progress from where he was two months ago.

As for me, my doctor thinks it's time to try going off my Lyme meds again.  This both excites and terrifies me!  I have been taking antibiotics for Lyme disease since I first got the infection, in the summer of 2008.  That's 3 1/2 years of daily antibiotics, plus a bunch of supplements, and additional medications to try to get at the stubborn Lyme spirochetes.  That's a total of 28 extra pills a day!!

I've tried stopping the treatment twice before, and both times, my Lyme symptoms returned within a week or two.  This last time, the doctor added lots of extras, including a second, more powerful antibiotic, an antifungal, and additional we hope this has done the trick.  When he told me to stop my meds, I said I'd wait until after the holidays.  So, I quit taking them today.  I just refilled all of our weekly medicine boxes, and it was a huge relief to have 28 less pills to worry about each day (and two less weekly reminder boxes for me).

Now, I wait.  This is the tough part.  The last two times I stopped, I went through a 2-month long herx reaction again when I had to restart, so I am really, really hoping this time will be different.  Wish me luck!  I'll let you know what happens.  Hopefully, this will be the start to a healthier new year!

Happy New Year!