June Update

It’s been a while since I’ve had the energy to write an update. As usual, I have a lot to document in terms of doctors and tests, but, overall, not much to report on my life and illness. My mother was here from Ireland this past week and that was, by far, the highlight of the last 4 months. 6 days seemed like 6 hours, though, and I’m left feeling a bit barren after her departure, like there are tumbleweeds blowing around inside my chest and hollow silence echoing against the inside of my skull.

I’m still housebound besides healthcare appointments and the odd dog walk on the scooter. I do think I’m marginally better than this time last year, though, which is heartening considering the horrendous ordeal of last autumn. Mostly, I think this because I’m walking more steps than I have since 2012. I regularly hit 2,000 on my pedometer, which does wonders for my mental well-being to think there is forward momentum. However, the flip-side is I have had more severe muscle pain and out-of-character joint aches. I am stiff in the morning and try to make myself put on compression stockings and a back brace if I’m going to stand in the kitchen for any length of time. I know I should scale back movement because, when I do, the muscle pain is better, but I’m really grasping onto that measurable progress for dear life.

There are other slight improvements. My sleep is still better than it was the first 3 years I was sick (although, I still don’t get much and it is plagued with fitfulness, nightmares and pain). My headaches, although they have resurfaced somewhat in the last month, were gone for a few months earlier this year, which is utterly life-changing. My resting face goes from this :twisted: to this :? .

There are still, always, a lot of daily debilitating symptoms. For 3 full weeks after my birthday outing, I was not doing well. My flu symptoms came back and that always alarms me — chills, sore throat, extremely heavy muscles, pain. I also had a few bouts of the worst vertigo I’ve experienced since my tilt table test payback. One night it came on so quickly and viciously, I fell over and hit the floor on my way to the loo from bed. I was moaning out loud from the queasy out-of-bodiness, which is unlike me, and I was reminded again of Laura Hillenbrand and how unrelenting vertigo could possibly be the worst imaginable symptom.

Hair loss hasn’t stopped, but is better than last year. Or the short, choppy cut disguises it more. My eyes are their usual nightmare of blurriness and sore extraocular muscles, even though I am regimented about (gently) scrubbing the lashes and using preservative-free tears throughout the day. Tinnitus and skin are still bad, my neck is still banjaxed. I am still spending about 14-17 hours in bed each day. I guess that’s a bit better than last year.

Finally, there is no real change in my worst symptom: Brain Drain. Which doesn’t describe it. I’ve been trying to articulate this symptom for years — to doctors, to my husband, my mother. It’s not brain fog. What I call brain fog feels tired and cloudy, causes effort to recall and calculate things. My Buzzy Brain is like Stephen King’s The Long Walk: if you can imagine being made to walk until you physically drop, but then transfer that body feeling to the brain. The same way muscle exhaustion is physical, my brain exhaustion feels physical. My brain can’t take one more step to do anything. Can’t read, write, speak, hear. It comes on gradually, so I usually find myself wading through the quicksand of a conversation or article, slurring or rereading the same thing over and over. I get testy, dizzy, weighted down by head pain and then realise, Oh, duh, time to go to bed and stop everything. Not being able to push through the brain problems (just finish this sentence, this tv show, this meal) is much more depressing than not being able to push through the physical limitations. Take my body, just, please, leave my mind.

The outcome of this is nothing ever gets done. I never finish tasks and months slip by. I also never seem to get going on any plan of attack to conquer the myriad of abnormal test findings: candida, low immunoglobulins, high cholesterol, reactivations of viruses, methylation problems, high mycotoxins. There’s always a bigger fire to put out — the poisoned nocturnal reactions, the crashing blood pressure, the death of my bowel — before I can carefully address less acute problems, while tip-toeing through the minefield of menstruation mast cell instability. Although, given my track record, maybe the best treatment for my body is no invasive treatment at all, just lots of pacing, meditation, good food and the pursuit of laughter.

The few things on which I am actively working are my hormone deficiencies and my tanked thyroid (as per usual). Since last September, I have now quintupled my levothyroxine (T4) and tripled my liothyronine (T3) and nothing has changed. I’m spending an absolute fortune on compounded meds, hoping my body will absorb them better than the generic, affordable ones, but, so far, no dice. I will update soon about my new, wonderful endocrinologist and her thoughts (as well as my other doctor visits).

So, almost 3 years and 8 months sick and that’s where I’m at. If I could find relief from the social isolation and financial instability, there could be some sort of life here.

But, as it stands, I take my joy from the incredibly beautiful spring we’ve had here in Seattle and every opportunity to lie outside in the garden oasis my husband has created and see my dogs run in the park.




A Sudden Illness by Laura Hillenbrand

With the publication of the excellent article in the New York Times Magazine last week, The Unbreakable Laura Hillenbrand, I just noticed that trending stats on my blog show many searches for her harrowing and moving account of the onset of her ME (CFS in the article), A Sudden Illness. I also noticed that the links I posted a few years ago for that article, which was originally in The New Yorker, were no longer working (and you have to pay to access the archives). So, here is a .pdf file of her article: A_Sudden_Illness.

I really want to feed the public’s curiosity about her journey and this illness while the NY Times article is still featured on their site (currently in the Health section and #4 on the Most Emailed list). Please feel free to share this post so we can educate while people are curious around the marketing of the film, Unbroken.

After reading the NY Times article, a few things stuck with me: she separated from her husband, which is heartbreaking, yet, sadly, understandable; she can walk down a street, go up and down stairs, do yoga; she has gotten much better and had horrific relapses; she still suffers constant vertigo and hasn’t gone insane; she is taking “new drugs” (what new drugs??)… and some of the workarounds we have to do to accommodate this illness can lead to a richer experience.

Another thing that stayed with me: her first editor said, after 25 years, “the first draft of ‘Seabiscuit’ is still the best he has ever received.” Damn, imagine being that writer. Would be a dream come true for me to publish a book, let alone have it touch millions.

There have been other interviews with her, but I’ve never seen one as thorough as this one by Wil Hylton. Hillenbrand said on Facebook, “I am so moved and grateful. Thank you, Wil, and to everyone who was interviewed for the piece. I can’t express how stirred I am by this.”

The New Yorker listed A Sudden Illness as one of the top ten most requested articles from 1999 to 2009, which speaks to the legions of sufferers looking for any information and first-hand accounts of onset. I know I was and that article changed the way I viewed my illness — it was at once comforting and totally terrifying, it both inspired me and left me hopeless. Mostly, it was validating.


I listened to Seabiscuit while driving my brother’s Isuzu Trooper from Knoxville, Tennessee to Durham, North Carolina to New York City. It was the first book I’d ever listened to on tape. I rented it from a Cracker Barrel (a restaurant chain, dotted along highways, that rents books from one location and allows you to return them to another) and it will always be inexorably linked to that road trip during an exhilarating summer. I’d had my first scary health incident a few weeks earlier — a two month headache that called for a lumbar puncture, which landed me in the emergency room the next morning with the worst pain I’ve ever experienced in my life. I wasn’t told to stay lying down after the procedure and my cerebral spinal fluid was seeping through the puncture wound that never healed. But, when I drove to New York soon after, I was a woman unleashed and vibrant, soaring with that new gratitude you can only get from a scary hospital visit. I had no schedule, no job, some money saved and Seabiscuit was my travel companion. We parted ways just as I was driving into Manhattan on a hot August night, wearing a skimpy sun dress and chunky sandals. All the windows were down and I was enveloped in those pungent NY smells and frenetic lights and noise: They fed me like life force. I had never heard of ME and I had no idea that one day, like the author of the book I just listened to, I would be housebound and forced to listen to books rather than read them… That evening, driving on the open road and then jumping out of the jeep to hug my best friend from college in the middle of the shimmering heat of Manhattan, might have been the most alive I’ve ever felt.

And then there’s Unbroken. If you’re one of the few I haven’t told to read it, I’m telling you now: Read it. Don’t go see the movie instead. Interestingly, while my husband was shopping in a Torrance, California Whole Foods the day before I went to see Dr. Chia and the first time leaving Seattle in two years, there was a public memorial service being held to celebrate Louis Zamperini’s life a few blocks away. Funny how things come back around like that.


By the time he returned to check on me, I was sweating profusely and chills were running over me in waves. He took my hand and was horrified: it was gray and cold, and the veins had vanished. He spread blankets over me and tried to help me drink a glass of milk. I couldn’t sit up, so he cupped my head in his hand and tipped the milk into my mouth sideways. It ran down my cheek and pooled on the pillow. My teeth chattered so much that I couldn’t speak. Borden called an emergency room. The nurse thought that I was in shock and urged him to rush me in. But we were far from the hospital, and doctors had never been able to help. I was sure that being moved would kill me.

— From A Sudden Illness
I have been there so many times.

Rag and Bone Blog Anniversary

I started this blog one year ago today. I never thought it would become a permanent part of my routine and something that gives me such pleasure. I started it as a daily tracker of treatment with low-dose naltrexone. The original url was ldndiary.com.

Since then, I have sacrificed most correspondence and contact (emails, cards, phone calls) and used my limited energy to write blog posts so that friends and family will all have a place to go to see how I’m doing. Of course, relationships are a two-way road and my hope is that my loved ones will continue to contact me. I will answer or pick up the phone when I can. If I can be an ear for someone or a shoulder to cry on, it makes me feel like my old self again ~ a reciprocal, functional friend.

This is a very tough line to walk for everyone involved. I’ve had friends tell me they thought I just wanted to be left alone. I am a very private person in some ways. I will lay bare my feelings, my opinions and my thoughts, always ~ I can’t be shocked or grossed out, I am rarely offended ~ but, I’m oddly private about sickness because I don’t want to accept that this happened to me. I want to believe that I am healthy and vibrant. I left my job and only told my bosses why. And I even told them half-truths. Everyone I had worked with for over 8 years didn’t really know what had happened. Eventually, I sent a select few individuals a link to my blog and said, “I’m not purposely out of contact. This is what is going on.” So, I understand completely why people didn’t contact me ~ they didn’t know and, if they did, they were trying to respect my privacy and hermit-ism.

Recently, a friend on Facebook commented on what a good book Unbroken is and I took the opportunity to comment that the author Laura Hillenbrand‘s story is as incredible as Louis Zamperini’s. I also mentioned that I was dealing with the same illness. I’ve been sick for almost 2 years and that was the first time I had said anything about ME/CFS on Facebook (and it’s not because I have thousands of friends on there ~ I’m selective; I’m only friends with people I know and like).

I don’t know if I’ll ever accept my limitations. I used to think of myself as a workhorse, a rock, an efficient multitasker. I spent my life feeling exuberant, passionate and ambitious. At work, I had huge responsibilities, I was in charge of seven restaurants and, no matter how stressful it was, I felt trusted, knowledgeable and accomplished ~ all traits that help self worth. This illness stripped me bare. Suddenly I felt weak, dependent, unattractive… Suddenly, my dreams for the future were out the window. I worked so hard to get where I was in my career and I had only just got there ~ I’d only just started to feel comfortable in my expertise and financially secure. My support network and any activities that gave me joy vanished… This on top of my new broken body.

I guess, after being sick almost two years, I’m finally coming around to the idea that it’s not a failure, not shameful. We all will grow old and health will fail. Mine just happened a little earlier and a little more abruptly. That’s what I tell myself. And I squash the voice that says No, this is worse than the majority of health problems. What do I know? I haven’t walked in anyone else’s shoes.

I think finding friends in the blogging community and making contact on ME/CFS forums has helped in ways I could have never imagined. I truly care about these people that I’ve never met face to face. I wonder how they are and I worry when they don’t write. They have made me laugh and cry. They comment on my blog and I feel like, I may be housebound, but I’m not alone. I’d never read a blog in my life until this day last year and now I am so incredibly grateful for my little circle of online friends who understand what I am going through and give me strength.

Thank you to my family for visiting, cheering me on and sending care packages to cheer me up. Thank you to the friends who call me, confide in me and tell me all the time that they’re thinking of me. And thank you to my blog family ~ my blamily. 😉 You know who you are. I wouldn’t finally be finding acceptance and hope without your help.

Title Credit

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


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


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


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



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.”


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


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


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.


Why have you started talking about your illness?


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.


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


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.


When did you learn you had chronic fatigue syndrome?


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.


What were your first symptoms?


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.


What happened once you left school?


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.


How are you now?


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.


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?


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.


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


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.


Did you always want to be a writer?


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.


How did you do the reporting for the book?


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.


Who helps you manage your life?


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.


Why did you decide to write about Louis Zamperini?


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.


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


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.


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


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.


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


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.

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