IV Saline Experiment

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My doctor finally acquiesced to my pleas to try IV saline and see if it helped my symptoms at all. I really wanted to try it last month when I was going through such hell after the tilt table test (I still cannot believe how profound the payback was from what felt like a comparatively benign day of tests), but she wasn’t convinced it was a worthy experiment. It wasn’t until I sent her POTSgrrl’s post (thank you!), that she thought we could give it a try.

I scheduled the appointment for the day my period was due because that is typically when I am most incapacitated by ME symptoms. It was 6 hours from the time we left the house until we returned. I never expected such a long day. We did 2 full bags of saline over a little less than 3 hours (and it took 3 tries to get the IV line in. Twice, the nurse said, “Shoot, I blew the vein.” I didn’t know what “blew the vein” meant and I was lying down and couldn’t see my arm, so I had a panic about what complications would happen, how much blood was everywhere and whether we should continue. Once something is underway ~ a treatment, a plane trip, anything ~ I don’t fret at all, but, during the time when I can change my mind, I always start to second-guess my decision. Maybe I shouldn’t have asked for saline. Everything always goes wrong. Maybe two “blown” veins is the universe telling me this is a bad idea. Maybe I should stop it now and go home. But the nurse went and got a different person to put in the IV and she was quick and confident and, once it was done, my mind was at ease).

The worst part about the treatment was how cold I was. The room was freezing and I spent 4 hours in there covered in blankets, my heated vest (it has a battery pack), my coat, my scarf and gloves, my husband’s coat, a water bottle that my husband filled with hot water from the tap… It was ridiculous.

Below is the email I sent my doctor this morning. I wanted to post it here so I have a record of how this treatment helped. Or didn’t.

Hi Dr. XXX,

My BP was 96/63 originally, somewhat the same after 1 bag of saline and, after 1.5 bags, it had actually gone down to 88/XX. After we were finished, it was back to the 9X/6X range again.

The good repercussions:

  • My heart rate has been so low. WOW! Morning HR on Saturday and Sunday was 53/54 bpm and, sitting watching tv, my HR was mid- to high-50s. That’s about 15 bpm lower than usual. Activities that would normally put my HR above 110 bpms (such as walking up 6 stairs and getting in bed) were only causing me to go into the 80s. The effect lasted all weekend.
  • My BP was higher than normal Friday night (109/67), but went back down the next day.
  • My period came Saturday morning and was definitely easier than it has been in the past few months. Cramps were minimal and I didn’t feel dizzy, however my muscles were still very sore and achy.
  • My energy was not bad over the weekend. I took 1400 steps Saturday and Sunday, which is a lot for me.
  • I was able to wash my cpap on Saturday and go out on my scooter for 45 mins on Sunday, both of which would normally be too much on the first two days of my period.

The bad repercussions:

  • The most prominent difference is, although my HR has been low, my heart feels like it is “tripping” every so often (maybe 4 or 5 times an hour). This is brand new. It feels like a pitter-patter palpitation, like it skips a beat or speeds up for a second… When this happened, my HR was still low.
  • It was a 6-hour total excursion, which, for me, is unheard of. This had to have repercussions.
  • I felt terrible Friday night. Heavy, inflamed, wiped out.
  • My eyes swelled up A LOT after the saline, as did my fingers, my sinuses and what felt like my lungs (my breathing felt laboured).
  • The spot in my throat under my jaw that itches when I am having an allergic reaction has been very itchy since Saturday morning (saline? period? something I ate?).
  • I slept poorly Friday and Saturday nights and woke up too early both days.
  • I woke up this morning (Monday) feeling HORRIFIC. Much worse than any day in the past week. Completely wiped out, in pain, barely able to get out of bed. Feels like the flu (throat, muscles, head), but of course it’s not. I don’t know if it’s payback from the appointment and the weekend or what, but, if there were benefits from the saline, it looks like they are gone now. HR is back to being in the 70s when I’m sitting.

Thank you so much for being willing to try this experiment! I really, REALLY appreciate having someone in my corner.

I’m going back to bed for the day now because I feel worse than I have in weeks. But I’ll leave you with some scenes from my scooter-walk with my husband and pups ~ now the thing that gives me the most joy in my life.

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My So-Called Life

The following is a glimpse into some of the ways my life has changed since ME became my constant companion.

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Vitamins, supplements and electrolytes, oh my! The only supplement that passed my lips pre-ME was an Emergen-C every once in a while. Now this. I just started taking B vitamins again after a 3-month pill hiatus. Every once in a while, I just need to get “clean”.

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My drug stash. I hoard them, but don’t take them. Call it preparedness or call it paranoia, I don’t mind. After winding up in the emergency room a dozen times, I like the security of having meds on hand. What if there’s an earthquake and we need immediate painkillers? Nuff said.

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This is an example of how I test drugs. That dot in my palm is 1/8 of a Xanax…which had no effect but a hive on my throat…which means I probably won’t try it again.

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Cramps, spasms, aches, sprains. I never knew you could have muscle pain like this. After bartending three 12-hour shifts in a row or after being on my feet for 15 hours during a restaurant opening, I never came close to the un-ignorable myalgia that exists in this disease.

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Yes, all these clothes are clean and, yes, they have been in this pile for a month. Folding involves a lot of arm action and I’m not willing to give up, say, loving on my dogs because I used up my arm movement quota to get neat clothes.

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Thank god we (he) built the walk-in shower when we first moved into this house. It makes it easy to wash 110-pound dogs and it gives a flat surface for a chair for me to sit on. Yes, this is a crappy metal folding chair ~ I ordered the fancy shower stool and it was large, cumbersome and unstable. I toppled off it within two minutes and I’m only wee; I can’t imagine a bigger person having to use one of those things.

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I took this picture in August. These are my “sun slippers” ~ because, even when it is so hot out that I have to lie in the shade with minimal clothes on, the ice blocks at the end of my legs need to be covered and in the sun.

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Shocking, isn’t it? Welcome to peaceful sleep. Zeo headband, amber-lensed glasses for blocking the blue light in my phone, cpap nasal mask and tape over my mouth. Haha! No wonder I’m exhausted. 😉

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Bedroom in the siting room. My husband moved to the basement room last year because he kept waking me up at night, but, this summer our bedroom got too hot for my sensitive system, so we swapped and I went to the basement. But, every teensy squeak of the floor boards above would wake me (and I don’t go back to sleep), so my husband moved to the living room where I couldn’t hear him. Poor guy.

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BUT, the basement bedroom has no window shades and even the light from the moon wakes me, so, as a temporary measure, we (he) covered the windows with tin foil. My own sensory-deprivation chamber. Luckily, we don’t have many guests. 🙂

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My crazy numbers: High heart rate because I dared to carry some stuff upstairs and low blood sugar because I dared to eat breakfast (I have reactive hypoglycemia).

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What my hair used to look like a few years ago and what it looks like now ~ lank, brown, going grey, unwashed, and always in a ponytail. I miss feeling pretty!

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My crazy skin. This makes me look so gnarly! My only constant skin issue is acne (which has been worse than ever since I came off the birth control pill 11 months ago), but, every once in a while, my autoimmune urticaria, sensitivities and rashes rear their ugly heads.

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Blood pooling. *No filters were used in the making of these pictures (although they were taken at different times of day and in different seasons). Thanks to Jackie at LethargicSmiles for the blood pooling photo inspiration.

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Some of the products I’ve purchased in the last year to try to help my IBS, my ANS, my allergies and my insomnia. I really miss the days when I didn’t read the ingredients of mouthwash!

Thanks for taking the tour! And thanks to Patrick at Quixotic for giving me this idea.

Over to you: What has changed in your life since you became sick?

Title Credit

Another Day in the Life.

Last weekend an old friend called to catch up after a few years. We had planned the day and time of the call, so I made sure I had the energy for it and didn’t have anything else scheduled that day besides a massage. After half an hour of talking to him (he is as energetic and animated and happy as I used to be), my voice began to get hoarse and the shakes started. I was lying down while talking to him ~ this is always easier ~ but I was outside in the sun, so I moved in to the blow-up mattress that is now in our living room, trying to quiet my system. We talked for another half hour and I wanted to keep going ~ we still had more to cover ~ but I could hear myself slurring and now my head was hurting and my ears were ringing and the internal tremors were so pronounced I think the phone was twitching against my ear. It was wonderful to talk to him. Catching up with family and friends is always good for my mood and fans the flames of life force… but, I knew it had taken too much out of me.

I spent the next few hours resting and then left for my massage. I was driving myself because the place is very close to our house and the last time I was there it wasn’t a problem as long as they put me in the ground floor room and I didn’t have to climb up the steep stairs to the second floor. I don’t get massages very often, but, when I do, I really love them. I ask her to “make my muscles feel like I went running without any of the energy expenditure or lactic acid build up” and somehow she does. It really helps my neck pain and headaches, too.

So, I arrive and realise I have to park across the street instead of directly outside the door because my appointment is later in the afternoon than usual and there is no parking between 4pm and 6pm. I am already running a little late because, after the talk with my friend, every little thing I did caused my heart rate to go too high and I had to move very slowly to keep it under 105 bpms. The chair in my car has a manual lever that you crank to raise it up. My husband is 6’2″; he has it at the lowest setting. I am 5’0″; I have it at the highest. Never before did I realise how many times you have to crank it to raise the seat up. Crank, crank…rest, breathe…crank, crank…rest, breathe…. The things I never knew about aging and injury and illness: I need an automatic car! I need automatic seat movers! I need a bathroom that doesn’t involve going up and down stairs!

[That last comment was off-topic because, the day after the massage, having made it to the garden but needing to drink a lot of water to continue to flush toxins and keep my BP up, I squatted in a corner of the shrubs to pee. You never heard that. Don’t tell anyone. But it saved me about 200 steps]

So, I parked across the street and it was another of those oh-shit-I-never-realised-the-gradient-was-so-steep-here moments. I walked very slowly and carefully ~ carrying my far-too-heavy purse ~ the few steps that brought me directly across from the door to the massage place. My heart was hammering, so I stopped there and waited. And waited and waited. Another bad thing about a later Friday appointment: there was WAY more traffic than usual.

Now, back in Ireland, there are crosswalks, but you certainly don’t need one to cross the road. It was like a game of Frogger: cars didn’t slow down and you bounced your way through lanes of traffic, working diagonally towards the place you were going so as not to waste precious time with right angles. We were quite skilled at it. I would get annoyed if a car slowed down when I was in the street because he/she was just messing with my timing and rhythm. I would wave them on: go, go, go… I have other lanes of traffic to sync my gait with… But here in Seattle? People are aghast if you don’t use a proper crosswalk with a proper green man telling you to properly proceed. Within a few years of being here, I had been given THREE jaywalking tickets ~ and the fines were hefty!

[Another quick aside: I was given the first ticket when I was 23 or 24. I had been heckled by someone outside a bar after closing and was walking home alone when I saw he was following me. I made a bee-line diagonally across the street to get to my apartment as fast as possible and, in the middle of the road, I felt a hand on my shoulder and wheeled around to hit it off of me, thinking it was the guy from outside the bar. It was a cop. He said, “You’re jaywalking. Don’t you answer when someone calls you?” I said, “No, it’s 2 in the morning, some creepster was following me, I was just trying to get home. I didn’t hear you.” He said, “Come with me” and motioned to the footpath back the way I had come. And then slooowly, smirkily and assholey, wrote me a ticket. I had been drinking and I was scared and I was pissed off. I said, “Jaywalking? Can’t you go catch some rapists or something?” And, I swear to god, his answer was: “Actually, there aren’t very many rapes around here.” I still get fired up thinking about it!]

SO, after waiting long minutes for the traffic to be clear in both directions, so I could slowly make my way across the street to the massage place, knowing I was now about 5 minutes late, I decided it wasn’t going to happen and I would have to cross the first side when it was clear and then weave through the cars stopped at the traffic light on the far side. But, when you have this illness, you can’t hop or skip or hurry your steps… you can’t really lift an arm to wave thank you. And the people in the cars looked at me like I was SO rude and one person raised their palms up as if to say “What the fuck?” and I realised the light had turned green and I was still doing my sloth-walk to the curb. I tried to look remorseful, I mouthed “I have this mitochondrial dysfunction and dysautonomia issues and weak muscles. I know I look able-bodied, but I’m not, please be patient” “sorry” to the driver. It was the longest walk across a road in my life.

Then I had to tackle the 5 steps up to the door (oh no, this is too much) and, when I walked in, the owner and my massage therapist were sitting in the waiting room – waiting. For me. I sat down. The owner (whom I know from my old life) said, “I was starting to get worried. You’re always early.” I burst into tears. I still hadn’t caught my breath and time was ticking away and I was embarrassed that parking across the street had caused me such problems.
“My heart rate… It took me longer than I anticipated to get across the street,” I said.
My massage therapist (who knows all about my illness) said, “To get to the crosswalk?”
I thought about the crosswalk 100 miles half a block away. “God no. I could never make it to the crosswalk.”
The owner said, “Next time you should park on the next street over.”
I said, “But that’s a lot more steps to walk.”
He halfway joked, “You need a Segway.”
I said, “I wouldn’t be able to stand.” Because, believe me, I have considered every option out there.

The three of us just sat there for a minute and I felt the panicky, trapped feeling I get every time I realise just how difficult every inch of the world can be and how ill-equipped society is to help. Every moment takes energy and every day needs to be so carefully thought out in advance. Nobody can understand this unless they live it.

Afterwards, my massage therapist surprised me by running out to get her car so she could DRIVE ME ACROSS THE STREET. I wish I had taken a photo ~ it was literally across the street and down a few car lengths. The gesture was so kind and generous after I had her now running about 15 minutes behind, that I didn’t bother telling her that walking uphill to her car idling in the alley and clambering into her tall SUV was as difficult as walking unaided back to my car on the downhill slope.

Gratitude for the day: for all the healthy people that go above and beyond to understand and accommodate and have compassion for people with disabilities.

Update: Symptoms and Doctor Appointments

Where to start? I am so behind on chronicling my life. You’d think it would be a one-liner (“Stayed home this month again, felt crappy, tried to keep spirits up.”), but there are so many subtleties to symptoms that I keep meaning to mention and so many tiny tweaks to treatments. There are so many interesting articles and blog posts that I want to comment on here and so many reasons to be hopeful and frustrated at current medical endeavors. I’ve written 100 blogs in my head this year that I thought were important and interesting ~ maybe even entertaining ~ but they never made it to the page and I’ve forgotten much of what I wanted to say. So, today, just an update.

Symptoms

First, the good news: my throat hasn’t been very sore in a while (if I don’t talk too much); my pain (below the neck) is minimal (if I don’t move too much); my dizziness is better (if I don’t stand up too much); my mood is ok (if I don’t think too much); 🙂  Haha, writing that was actually cracking me up! But, seriously, the underlying perma-symptoms of ME are stable and predictable if I don’t change my life up too much: exhaustion, achiness, tremors, horrid skin, blurry vision, stiffness, and fluishness are all manageable and (my) normal. The reality is, I feel unwell all day every day. Sometimes it makes me feel like I’m okay, I’m going to be fine and sometimes it makes me feel like I don’t want to die, I’m scared, I can’t do this anymore. My most pressing concerns lately have been, of course, the headache, terrible sleep, horrific bloating and constipation, and my free fall into less and less mobility and activity with higher and higher heart rate. Also, my brain torpor frightens me to the point that I can’t talk about it.

Thankfully, my brain pain train morphed from the high-speed TGV** to a kiddy carnival choo-choo. It still comes chugging through my skull in the afternoons and after I stare at a screen for too long, but, for the past 4 days or so, it is not torturing me. I stopped taking my Chinese herbs for a week; I don’t know if that is what caused or helped my headache, but I started them again yesterday (back down to 1/day) and we’ll see what happens.

3 weeks ago, in a place of desperation and panic about my disappearing sleep and unrelenting headache, I rummaged in my “Drugs I Don’t Take Drawer” and found gabapentin. The first night I took about 50mg (half a pill) and immediately my sleep was better. I still woke up a lot and it was unrefreshing as ever, but I slept for 8-9 hours rather than 6. That slice of heaven lasted a little over a week and now I’m back to the same terrible sleep, exacerbated by a very rare Seattle heat wave with no air conditioning. I added melatonin and went up to 150mg of gabapentin, but no relief (unless the gabapentin is the reason my headache is a better). I was prescribed trazodone for sleep, but haven’t gotten the nerve up to take it yet. I had planned to increase my dose of gabapentin first and then add doxylamine succinate and then swap the doxylamine for trazodone, if needed. Maybe I should just swap the gabapentin for trazodone since, just like last year, the gabapentin has caused awful constipation.

Let’s talk about that a bit. Within 48 hours of my first dose, things just stopped moving. It’s reached critical mass. I take a stool softener, I put soluble fiber in my tea, I drink raspberry leaf tea (thanks to a tip from Jess over at My Journey Thru ME, who wrote a great post on IBS), I take 400mg of magnesium before bed and I have been taking Miralax every single night. I’m still in bad shape, very uncomfortable, and worried that this is more dangerous than it would be in a healthy person because of my gut dysbiosis. The Good Doctor said, “You have to keep things moving because your bowels are in bad shape.” I think I’ll actually have to stop gabapentin to get back to normal.

My scariest symptom lately is my inability to do any activity without my heart rate skyrocketing. I’ve been sitting on the bathroom floor, washing my cpap equipment every week for the last 8 months. It’s never been an issue. Yesterday, my heart rate kept revving up to 110+ bpm while I sat in that same position, doing the same slow, careful scrubbing I’ve always done. This keeps happening. Taking pictures in the garden, reaching up to pick berries, talking a little too animatedly, putting sun cream on, adjusting a blanket, petting the dogs… Normally, if I were sitting down, these activities wouldn’t cause problems. Now, even sitting or lying, I feel that telltale sign (which initially registers as breathlessness, not as tachycardia), look at my HR monitor and am surprised every time: Oh, what was I thinking jiggling my foot while talking at the same time? How dare I wash my hands so vigorously. I should know better!

I can’t help thinking it is a direct result of deconditioning. It could be a direct result of illness ~ I know this is common is so many of us ~ but, the less I move, the less I’m able to move and that scares the shit out of me. So, every day I wonder: Should I push myself to “exercise” more so my body maintains some strength and life force? Or is that exactly what got me here and I should do less, less, less? This is one of the many contradictory evils of this disease: The less activity you are able to do, the more you panic and want to try doing more.

Medical professionals

I’ve had a some new appointments in the past few months:

1. An amazingly wonderful physical therapist whom I have been seeing each week. He is not really a PT; I don’t know the name for what he does. I lie on his plinth (I learned this name when I said to him, “That pain made me come off the bed. Sorry ~ ‘table’.” And he said, “Actually, ‘plinth’.”) and he finds the rotten-apple spots in my muscles and then eliminates them by restoring the circulation with magic fingers. I don’t have to move and there is very little energy expenditure (besides our tendency to talk nonstop about music, movies, books, and food. We never talk about my illness except for the initial update on my current problem areas. I probably chat more “normally” to him than anyone else in my life and always leave smiling ~ that, in itself, is worth every penny and drop of ATP). This treatment is the number one first time I have had a very obvious FIX to a problem. He worked on my lower spine pain and coccyx burning and, that evening, IT WAS GONE. And it stayed gone! He’s a magic man.

2. Stupidly, obtusely, naively, I went to see a cardiologist about my BP and HR issues, plus the fact that bowel rumbling triggers a sort of vasovagal heart flutter and lung tightening. I’m sure most of you people with ME know what’s coming. This doctor said, “I see a lot of you girls with low blood pressure and syncope problems and you all have one thing in common: low body weight. You need to gain some weight. Eat more protein and salt. I know everyone is concerned about being thin and looking good, but it’ll help. Start walking more and lifting 5 or 10lb weights and come back in 6 months.”

As carefully and stoically and graciously as I could, I said, “I am 5 foot tall. This is the heaviest I have been since college. [Here he interjected: “Right. And I bet you feel better.”] No, I don’t feel better, you moron. If I gain weight, it’ll just be fat because I can’t move very much. I don’t care what I look like because I’m just trying not to die I don’t ever get dressed or leave the house, you condescending bastard. I can’t imagine using 10lb weights because I wouldn’t be able to leave the bed for weeks can barely lift my arms, but I’ll try increasing my steps. See you never.” He’d be happy to know that I have since gained another 5lbs from the gabapentin and, shockingly, I don’t feel any different except I am even more uncomfortable in my body than I was last month (and, no, Dr. Iseealotofyougirls, I don’t mean uncomfortable with how I look, I mean it is not comfortable to lose most of your muscle tone and gain 12lbs of fat in its place!)

3. The saga of the oral appliance (OA) for sleep apnea. Here’s the wrap up: I saw the orthodontist in April, waited over a month before being told I had to see a sleep specialist again for insurance to approve the OA, and then waited over ANOTHER month before being called in to fit the OA (a 2 hour appointment!). I slept with it in for 5 hours and woke up in extreme pain. Yes, it had the obvious repercussions, such as temporarily changing my bite and making my TMJ sore, but the big problem was pain stabbing into my top and bottom right canines. It felt like they had been drilled into without anesthetic. So, back to the orthodontist for another fitting, which ended in a decision to send the appliance back to the lab for tweaking. Milo’s Law: if it can go wrong, it will go wrong for me. It’ll be another 3 weeks before it comes back from the lab.

4. On a good note, after I saw my GP, she sent me a letter saying she was shocked by my decline and panicked to find something to help me and sorry the medical community is failing me and honored that I allowed her to take this journey with me. I wish I could reprint the letter here because it could restore some faith in medical professionals, but I want to be respectful of her privacy. She is leaving for her annual 2-month break, but is seeing me next week on her last day and is willing to run some new tests (finally!). I’ve researched nonstop for the last month, trying to decide what tests to request, but I’ve ended up more confused than when I started. I need to email her tomorrow with my list. If anyone has any advice, please let me know. I can always talk to her about additional tests at the appointment. Here are my thoughts:

  • Mycoplasma tests
  • Cytokine profile
  • NK cell function test
  • Hormones (ACTH, LH, HGH, testosterone, insulin like growth factor(?))
  • RNase L Panel
  • Immunoglobulin
  • Lactic acid
  • folate
  • DHEA sulphate
  • Heavy metals
  • Amino Acid
  • IgG (?)
  • potassium, copper and …?

For disability (but really don’t want to do):

  • Neuropsychological Testing
  • VO2 Max (although it would be a 1-day stress test done by somebody who doesn’t know about ME)
  • tilt table test

 

Daily gratitude:
I am grateful for the few friends I have.
I am grateful for the few hours I sleep.
I am grateful for the little energy I have.
I am grateful for the still life I lead.

** I’m sure there are faster trains now, but, back in the 90s, I took the TGV all over Europe and its speed made a lasting impression. I still say “tay gjay vay”, pronouncing the letters in French, which is how I learned it.

I’m gonna go get the papers, get the papers…

I don’t know what the people in your life enjoy, but one of the best presents I have received in the past year was The New York Times full digital access from my brother, T. If you are trying to think of a present for your house- or bed-bound friend, this could be a lovely luxury.

Before I was a complete workaholic, I used to enjoy going to the coffee shop near where I lived and reading The New York Times every morning. That turned into weekend delivery and, eventually, after Sunday papers piled up unopened in a corner for months, I stopped reading the paper altogether.

My mother’s partner (significant other? boyfriend? common-law-husband? what is the appropriate term these days?) worked for The Irish Times, we lived with my aunt who worked for the The Irish Times, E.’s father worked for The Irish Times ~ I was surrounded by it my whole life and I’ve missed the paper. I’ve missed having a newspaper routine. I bitch constantly about the format of television news programs and wistfully think about how much I loved to visit The Irish Times building in Dublin: the obvious camaraderie, the huge heavy doors of the lift, what a treat it was to watch the printing presses…

Anyway, I am desperately ill this week. I shouldn’t be expending the energy to type this, but I wanted to share articles once in a while when I am not up for writing. Enjoy:

APRIL 19, 2013

Heart Rate as a Measure of Life Span

By NICHOLAS BAKALAR

A new study, published in Heart, suggests that a higher resting heart rate is an independent predictor of mortality — even in healthy people in good physical condition.

Danish researchers gave physical exams to 5,249 healthy middle-aged and elderly men beginning in 1971. In 1985 and 1986, they tracked survivors, of whom there were 3,354. Of these, 2,798 had sufficient data on heart rate and oxygen consumption for the analysis. Researchers followed them through 2011.

After controlling for physical fitness and many other health and behavioral factors, they found that the higher the resting heart rate, the greater the risk for death. Compared with men with rates of 50 beats a minute or less, those at 71 to 80 beats had a 51 percent greater risk. At 81 to 90 beats, the rate of death was doubled, and over 90 it was tripled.

“If you have two healthy people,” said the lead author, Dr. Magnus Thorsten Jensen, a researcher at Copenhagen University Hospital Gentofte, “exactly the same in physical fitness, age, blood pressure and so on, the person with the highest resting heart rate is more likely to have a shorter life span.”

MARCH 29, 2013, 1:28 PM

Infections Tied to Cognitive Decline

By NICHOLAS BAKALAR

A new study adds to the evidence that chronic infection, known to be associated with vascular disease, is also associated with poorer performance on tests of mental ability.

Researchers studied 1,625 people in northern Manhattan with an average age of 69, testing them with two well-validated tests of mental acuity. They also tested their blood for “infectious burden” — their degree of exposure to five common viruses and bacteria: cytomegalovirus, herpes 1 and 2, Helicobacter pylori, and Chlamydia pneumoniae. The study appeared online in Neurology.

Lower scores on the cognitive tests were associated with higher infectious burden as measured by blood tests, and the connections were most prominent among those without a high school diploma, people who were physically inactive and women.

The reasons for the link are not known, but chronic infection contributes to inflammation, and inflammation leads to atherosclerosis, a known risk factor for stroke and dementia.

“Another mechanism might be that these pathogens are neurotoxic, directly affecting the nerves,” said the lead author, Dr. Mira Katan, a clinical research fellow at Columbia.

“We’ve found a common pattern,” Dr. Katan added, “but we cannot prove causality. If we could show causality, we could intervene and address two very important public health burdens, dementia and stroke.”

PRIL 17, 2013, 11:58 AM

Is Organic Better? Ask a Fruit Fly

By TARA PARKER-POPE

When Ria Chhabra, a middle school student near Dallas, heard her parents arguing about the value of organic foods, she was inspired to create a science fair project to try to resolve the debate.

Three years later, Ria’s exploration of fruit flies and organic foods has not only raised some provocative questions about the health benefits of organic eating, it has also earned the 16-year-old top honors in a national science competition, publication in a respected scientific journal and university laboratory privileges normally reserved for graduate students.

The research, titled “Organically Grown Food Provides Health Benefits to Drosophila melanogaster,” tracked the effects of organic and conventional diets on the health of fruit flies. By nearly every measure, including fertility, stress resistance and longevity, flies that fed on organic bananas and potatoes fared better than those who dined on conventionally raised produce.

While the results can’t be directly extrapolated to human health, the research nonetheless paves the way for additional studies on the relative health benefits of organic versus conventionally grown foods. Fruit fly models are often used in research because their short life span allows scientists to evaluate a number of basic biological effects over a relatively brief period of time, and the results provide clues for better understanding disease and biological processes in humans.

For her original middle-school science project, Ria evaluated the vitamin C content of organic produce compared with conventionally farmed foods. When she found higher concentrations of the vitamin in organic foods, she decided she wanted to take the experiment further and measure the effects of organic eating on overall health.

She searched the Internet and decided a fruit fly model would be the best way to conduct her experiment. She e-mailed several professors who maintained fly laboratories asking for assistance. To her surprise, Johannes Bauer, an assistant professor at Southern Methodist University in Dallas, responded to her inquiry.

“We are very interested in fly health, and her project was a perfect match for what we were doing,” Dr. Bauer said. Although he would not normally agree to work with a middle-school student, he said, Ria performed on the level of a college senior or graduate student. “The seriousness with which she approached this was just stunning,” he said.

Ria worked on the project over the summer, eventually submitting the research to her local science fair competition. The project was named among just 30 finalists in the prestigious 2011 Broadcom Mastersnational science competition. Dr. Bauer, following his lab’s policy of publishing all research regardless of outcome, urged Ria, then 14, to pursue publication in a scientific journal. Dr. Bauer and an S.M.U. research associate, Santharam Kolli, are listed as co-authors on the research.

Now a sophomore at Clark High School in Plano, Tex., Ria said she was excited to see her work accepted by a scientific journal. “I had no idea what publishing my research meant,” said Ria, who last week was juggling high school exams, a swim meet and a sweet-16 party. “My mom told me, ‘This is a pretty big deal.’”

Ria has continued to work in Dr. Bauer’s lab. For her 10th-grade science fair project she created a model for studying Type 2 diabetes in fruit flies. The work will be presented in a few weeks. She plans to build on that research by studying the effects of alternative remedies, like cinnamon and curcumin, found in turmeric, on diabetes in fruit flies.

Ria said she was only just beginning to think about applying to colleges and is intrigued by Brown University and the Massachusetts Institute of Technology, although she has not ruled any school in or out. Dr. Bauer said that he was happy to have her working in his lab and that her biggest problem was that “she has too many ideas for her own good.”

Meanwhile, Dr. Bauer said the study of organic foods and fruit fly health has raised some important questions that he hopes can be answered in future research. The difference in outcomes among the flies fed different diets could be due to the effects of pesticide and fungicide residue from conventionally raised foods.

Or it could be that the organic-fed flies thrived because of a higher level of nutrients in the organic produce. One intriguing idea raises the question of whether organically raised plants produce more natural compounds to ward off pests and fungi, and whether those compounds offer additional health benefits to flies, animals and humans who consume organic foods. “There are no hard data on that, but it’s something we’d like to follow up on,” he said.

Dr. Bauer said he’d love to keep Ria around S.M.U. but realizes that she would have her pick of colleges around the country. “She is really extraordinary,” he said. “If she was a graduate student in my lab, she would be tremendous.”

While far more study needs to be conducted to determine the possible benefits of organic foods on human health, the debate has been settled in the Chhabra household, where Ria’s parents no longer argue about the cost of organic food. “All of our fresh produce is organic,” she said.

DECEMBER 17, 2012, 3:41 PM

Really? Losing Sleep Reduces Your Pain Tolerance

By ANAHAD O’CONNOR

THE FACTS

Chronic sleep loss has many downsides, among them weight gain, depression and irritability. But now scientists have found a new one: It also weakens your tolerance for pain.

In recent studies, researchers have shown that losing sleep may disrupt the body’s pain signaling system, heightening sensitivity to painful stimuli. Though it is not clear why, one theory is that sleep loss increases inflammation throughout the body. Catching up on sleep if you are behind may reduce inflammation.

Scientists believe this could have implications for people with chronic pain. It could also have an impact on the effects of painkillers, which appear to be blunted after chronic sleep loss.

In one study published in the journal Sleep, scientists at the sleep disorders and research center at Henry Ford Hospital in Detroit recruited 18 healthy adults and split them into two groups. One was allowed to sleep for an average of nine hours, while the other averaged two fewer hours of sleep each night.

To assess pain thresholds, the researchers measured how long the subjects were able to hold a finger to a source of radiant heat. After four nights, the group that was allowed to sleep the longest was able to withstand the painful stimuli much longer, by about 25 percent on average.

Several studies in the past have had similar findings, including one in 2006 that showed that one night of cutting sleep in half could significantly reduce a person’s threshold for physical pain.

“Disturbed sleep is a key complaint of people experiencing acute and chronic pain,” one report concluded. “These two vital functions, sleep and pain, interact in complex ways that ultimately impact the biological and behavioral capacity of the individual.”

THE BOTTOM LINE

Chronic sleep loss appears to lower tolerance for pain, though it’s not clear why.

[I am posting the following article because so many of us are on medications. To get straight to the interaction list, go here.]

DECEMBER 17, 2012, 6:21 PM

Grapefruit Is a Culprit in More Drug Reactions

By RONI CARYN RABIN

The patient didn’t overdose on medication. She overdosed on grapefruit juice.

The 42-year-old was barely responding when her husband brought her to the emergency room. Her heart rate was slowing, and her blood pressure was falling. Doctors had to insert a breathing tube, and then a pacemaker, to revive her.

They were mystified: The patient’s husband said she suffered from migraines and was taking a blood pressure drug called verapamil to help prevent the headaches. But blood tests showed she had an alarming amount of the drug in her system, five times the safe level.

Did she overdose? Was she trying to commit suicide? It was only after she recovered that doctors were able to piece the story together.

“The culprit was grapefruit juice,” said Dr. Unni Pillai, a nephrologist in St. Louis, Mo., who treated the woman several years ago and later published a case report. “She loved grapefruit juice, and she had such a bad migraine, with nausea and vomiting, that she could not tolerate anything else.”

The previous week, she had been subsisting mainly on grapefruit juice. Then she took verapamil, one of dozens of drugs whose potency is dramatically increased if taken with grapefruit. In her case, the interaction was life-threatening.

Last month, Dr. David Bailey, a Canadian researcher who first described this interaction more than two decades ago, released an updated list of medications affected by grapefruit. There are now 85 such drugs on the market, he noted, including common cholesterol-lowering drugs, new anticancer agents, and some synthetic opiates and psychiatric drugs, as well as certain immunosuppressant medications taken by organ transplant patients, someAIDS medications, and some birth control pills andestrogen treatments. (The full list is online; your browser must be configured to handle PDF files.)

“What drove us to write this paper was the number of new drugs that have come out in the last four years,” said Dr. Bailey, a clinical pharmacologist at the Lawson Health Research Institute, who first discovered the interaction by accident in the 1990s.

How often such reactions occur, however, and how often they are triggered in people consuming regular amounts of juice is debated by scientists. Dr. Bailey believes many cases are missed because doctors don’t think to ask if patients are consuming grapefruit or grapefruit juice.

Even if such incidents are rare, Dr. Bailey argued, they are predictable and entirely avoidable. Many hospitals no longer serve juice, and some prescriptions carry stickers warning patients to avoid grapefruit.

“The bottom line is that even if the frequency is low, the consequences can be dire,” he said. “Why do we have to have a body count before we make changes?”

For 43 of the 85 drugs now on the list, consumption with grapefruit can be life-threatening, Dr. Bailey said. Many are linked to an increase in heart rhythm, known as torsade de pointes, that can lead to death. It can occur even without underlying heart disease and has been seen in patients taking certain anticancer agents, erythromycin and other anti-infective drugs, some cardiovascular drugs like quinidine, the antipsychotics lurasidone and ziprasidone, gastrointestinal agents cisapride and domperidone, and solifenacin, used to treat overactive bladders.

Taken with grapefruit, other drugs like fentanyl, oxycodone and methadone can cause fatal respiratorydepression. The interaction also can be caused by other citrus fruits, including Seville oranges, limes and pomelos; one published case report has suggested that pomegranate may increase the potency of certain drugs.

Older people may be more vulnerable, because they are more likely to be both taking medications and drinking more grapefruit juice. The body’s ability to cope with drugs also weakens with age, experts say.

Under normal circumstances, the drugs are metabolized in the gastrointestinal tract, and relatively little is absorbed, because an enzyme in the gut called CYP3A4 deactivates them. But grapefruit contains natural chemicals called furanocoumarins, that inhibit the enzyme, and without it the gut absorbs much more of a drug and blood levels rise dramatically.

For example, someone taking simvastatin (brand nameZocor) who also drinks a small 200-milliliter, or 6.7 ounces, glass of grapefruit juice once a day for three days could see blood levels of the drug triple, increasing the risk for rhabdomyolysis, a breakdown of muscle that can causekidney damage.

Estradiol and ethinyl estradiol, forms of estrogen used in oral contraceptives and hormone replacement, also interact with grapefruit juice. In one case in the journal Lancet, a 42-year-old woman taking the birth control pill Yaz developed a very serious clot that threatened her legseveral days after she started eating just one grapefruit a day, said Dr. Lucinda Grande, a physician in Lacey, Wash., and an author of the case report.

But Dr. Grande also noted that the patient had other risk factors and the circumstances were unusual. “The reason we published it as a case report was because it was so uncommon,” she said. “We need to be careful not to exaggerate this.”

Some drugs that have a narrow “therapeutic range” — where having a bit too much or too little can have serious consequences — require vigilance with regard to grapefruit, said Patrick McDonnell, clinical professor of pharmacy practice at Temple University. These include immunosuppressant agents like cyclosporine that are taken by transplant patients to prevent rejection of a donor organ, he said.

Still, Dr. McDonnell added, most patients suffering adverse reactions are consuming large amounts of grapefruit. “There’s a difference between an occasional section of grapefruit and someone drinking 16 ounces of grapefruit juice a day,” he said.

And, he cautioned, “Not all drugs in the same class respond the same way.” While some statins are affected by grapefruit, for instance, others are not.

Here is some advice from experts for grapefruit lovers:

¶ If you take oral medication of any kind, check the list to see if it interacts with grapefruit. Make sure you understand the potential side effects of an interaction; if they are life-threatening or could cause permanent injury, avoid grapefruit altogether. Some drugs, such as clopidogrel, may be less effective when taken with grapefruit.

¶ If you take one of the listed drugs a regular basis, keep in mind that you may want to avoid grapefruit, as well as pomelo, lime and marmalade. Be on the lookout for symptoms that could be side effects of the drug. If you are on statins, this could be unusual muscle soreness.

¶It is not enough to avoid taking your medicine at the same time as grapefruit. You must avoid consuming grapefruit the whole period that you are on the medication.

¶In general, it is a good idea to avoid sudden dramatic changes in diet and extreme diets that rely on a narrow group of foods. If you can’t live without grapefruit, ask your doctor if there’s an alternative drug for you.

FEBRUARY 4, 2011, 2:15 PM

An Author Escapes From Chronic Fatigue Syndrome

By TARA PARKER-POPE

Laura Hillenbrand, the best-selling author of“Seabiscuit: An American Legend,” is known for her exuberant storytelling and dynamic characters. Her newest book, “Unbroken: A World War II Story of Survival, Resilience and Redemption,” is a riveting tale of the life of an athlete and war hero, Louis Zamperini.

Ms. Hillenbrand’s ability to transport her readers to another time and place is all the more remarkable in light of the fact that she is largely homebound, debilitated by chronic fatigue syndrome, or C.F.S.

The illness, a devastating and little understood disorder, is characterized by overwhelming fatigue and various nonspecific symptoms like muscle pain, memory problems, sore throat, swollen lymph nodes, achy joints and unrefreshing sleep. I recently spoke with Ms. Hillenbrand about her latest book and why she is speaking out about the challenges of life with C.F.S. Here’s our conversation.

Q.

Why have you started talking about your illness?

A.

I had never been public about my illness at all before “Seabiscuit.” I didn’t want to talk about it very much because I had the experience of being dismissed and ridiculed. People don’t understand this illness, and the name is so misleading. I realized I had this opportunity because I was going to be getting press attention for the book. I’m going to talk about it because I can. Maybe that will save the next person from going through what I did.

Q.

Do you think it’s hard for people to understand how debilitating chronic fatigue can be?

A.

This is why I talk about it. You can’t look at me and say I’m lazy or that this is someone who wants to avoid working. The average person who has this disease, before they got it, we were not lazy people; it’s very typical that people were Type A and hard, hard workers. I was that kind of person. I was working my tail off in college and loving it. It’s exasperating because of the name, which is condescending and so grossly misleading. Fatigue is what we experience, but it is what a match is to an atomic bomb.

This disease leaves people bedridden. I’ve gone through phases where I couldn’t roll over in bed. I couldn’t speak. To have it called “fatigue” is a gross misnomer. Most people, when they hear the disease name, it’s all they know about it. It sounds so mild. When I first was sick, for the first 10 years or so, I was dismissed. I was ridiculed and told I was lazy. It was a joke.

Q.

When did you learn you had chronic fatigue syndrome?

A.

I got it when I was 19, and I was diagnosed at 20 by the head of infectious disease at Johns Hopkins. It was the most hellish year of my life. I went from doctor to doctor. I got very thin and lost 22 pounds in a month. One doctor thought I was anorexic and lectured me about it. After my appointment he followed me to the bathroom and put his ear to the door. When my doctor at Johns Hopkins finally said, “You have a real disease,” that was an important moment for me.

Q.

What were your first symptoms?

A.

As it does in most people, it had a very sudden onset. I was an athlete and had always been healthy. I was riding in a car on my way back from spring break my sophomore year of college and felt very nauseated. I guessed it was food poisoning. I woke up a few days later, and I literally could not sit up, I was so weak. It hit me that fast. I had to drop out of school because I couldn’t make the walk to the classes.

Q.

What happened once you left school?

A.

I was bedridden the first two years. I was having fever all the time and huge lymph nodes; the reddest, rawest, terrible sore throat; typical sweats and chills like the flu, but it didn’t go away, month after month. I had the most extreme exhaustion and balance problems, strange cognitive things, trouble concentrating. I couldn’t read analog clocks anymore. I’d try to say one word and a different word would come up. I had brain fog that was terrible in 1987 and 1988, and then it started to slowly get better.

I did better until 1991, when I tried to take a road trip to Saratoga. I had a catastrophic C.F.S. crash, went into shock, and went back down to the bottom to worse than ever. Then vertigo started, and ever since the room appears to be moving around me. I feel like I’m moving all the time.

Q.

How are you now?

A.

I’m housebound now. I had a relapse while I was working on the book in 2007. I got weaker than I’ve ever been. I’ve been too weak to leave the house for two years. I only leave the house about once a month. I’m just not very strong. A lot of days I don’t get down the stairs. It’s a slow process to recovery. The book publicity is quite difficult for me. I’m not able to do that much of it. It’s taking a whole lot out of me.

Q.

It’s hard for me to imagine how you could have done the research and writing for two books during this time. How did you do it?

A.

It’s a trade-off for me. While it’s really hard to do, at the same time, I’m escaping my body, which I really want to do. I’m living someone else’s life. I get very intensely into the story, into the interviews and the research. I’m experiencing things along with my subjects. I have a freedom I don’t have in my physical life.

Writing is a godsend to me that way. Without it I wouldn’t have anything. I am completely still almost all the time. A lot of time I don’t leave the upstairs. What I have is the story I’m working on. It’s a wonderful thing for me to get out of my body for a while.

Q.

Do you think having C.F.S. influences your writing?

A.

Because my life is so silent and so still, I think I’m able to get deeper into what I’m working on. My mind is willing to get out of here and go into there. It becomes such an intense experience.

Q.

Did you always want to be a writer?

A.

At the time I got sick, I wanted to be a history professor. I was 8 years old when I went across the street from my house to a fair, and they always had a used book sale. For a quarter I bought a book called “Come On Seabiscuit.” I loved that book. It stayed with me all those years. I was sick and housebound and looking for something I could write about. I wrote an article. I was partway through it and realized there was a huge untold story.

Q.

How did you do the reporting for the book?

A.

Lots and lots of interviews, at least a hundred, and going through newspaper archives. The family of Seabiscuit’s owner sent me 30 enormous leather scrapbooks. I bought so many things on eBay — vintage things, magazines. I did many interviews with very, very old men.

Q.

Who helps you manage your life?

A.

I’m married. I have a wonderful husband. The house is all set up for me. There is a refrigerator upstairs. My desk has everything I need. Toaster, utensil and bowls, teapot — everything I need. I got married in 2006. We’ve been together since before I got sick. He’s my college sweetheart. We waited to get married until I got reasonably well. I was too sick to go to the reception. I was just at the wedding for a few minutes. He has been through this with me. Some couples it would drive apart; it has drawn us together. We have a deep understanding. He doesn’t see me as a sick person. He sees me as everything else I am. It’s a really wonderful relationship. We had to learn how to do it. It’s not easy at all to be a couple with a disease.

Q.

Why did you decide to write about Louis Zamperini?

A.

Seabiscuit led me to him. My subject was one of the greatest runners in the world in the 1930s, likely to break the four-minute mile. Seabiscuit was famous at the same time. All the newspapers that covered Seabiscuit also covered Louis. I kept reading about him. When I got done with Seabiscuit, I wrote him a letter and called him, and he told me his life story. I had to write this book.

It’s the most amazing survival story. Louis was an Olympic runner who hung up his shoes and became a bombardier. He crashed in the Pacific and floated on a raft for 47 days. Sharks jumped on board to pull him off. He was attacked by a Japanese bomber. He nearly starved to death. He went through a typhoon and was captured. His captors experimented on him, enslaved him, and he was a prisoner for two years. The things that happened to him, and his defiance — it’s an amazing story.

Q.

It sounds like on some level you could relate to him.

A.

I think because of what I’m dealing with, I’m really interested in people who become trapped in extremity and have to rely on their character to pull them out of it. I’m fascinated by the struggle, and the attributes that enable people to survive these things. I want to look to them for inspiration. I think that’s why I’m drawn to it.

Louis has told me he felt I was someone who was easy to open up to because he knows I’ve suffered. With someone else, I think he might have been a little more taciturn. But he felt, “She gets it. She’s been to this place herself.”

Having to go all the way to the bottom of yourself to find the resources to survive: this is something I understand well. I understand desperation. It’s an emotion I have dealt with a thousand times in the last 24 years. You feel like you don’t know where you’re going to get the strength to go on. We’ve been to the same place in different circumstances. I’m not comparing myself to a prisoner of war, but there are common emotions that enable me to identify with him.

Q.

Do you think your writing would be different if you didn’t have this illness?

A.

I don’t remember what it’s like to feel well. I’m 43. I was 19 when I got sick. It’s a lifetime ago. It’s hard for me to imagine what I would have been as a writer without the history I have now. We’re all sitting in our particular circumstances and writing from that place.

Q.

Your personal story is so compelling. Have you thought about writing something autobiographical?

A.

My husband wants me to. I just don’t know that I want to do that. I have to spend so much time being vigilant on my body and worrying about my body and suffering. So much of my own autobiography would be about my health, and I don’t know if I want to spend my professional life thinking about that. I write to escape my circumstances.

Body willing, and if I can find a subject that compels me, I’ll keep writing. It’s a great way to touch the world, because I’m not in this world. I went out recently to the CVS drugstore for the first time, and they had these new checkout things with no person at the checkout counter. I was baffled by this. Writing is my way of communicating with the world, and I don’t have any other way to do it, so I want to keep doing it.

Title Credit