Oh, I’ll be free… (immunoglobulin infusion success)

The first time I ever passed out was in a blood plasma donation clinic in Madison, Wisconsin. My brother, who had attended the University of Wisconsin before I did, tipped me off that they paid quite well for plasma, so every so often I would go spend a few hours in a big comfy chair with my vein tapped. On this particular day, I suddenly got very dizzy, nauseous and clammy and the next thing I knew I was coming to with ice packs under my neck and the chair tipped all the way back so my feet were in the air. I was sweaty and shaky, but I stayed until the plasmapheresis was over and got my cash. I didn’t think twice about it and continued to donate plasma until one day, during the prescreening tests, I came up positive for heroin. It turns out it was because of the poppy seed muffin I had for breakfast, but it didn’t matter, I was not allowed to give plasma again. One abnormal test and you were no longer a candidate. I never asked what plasma was used for and it certainly never crossed my mind that I, myself, may need a medication made from thousands of people’s plasma donations.

I’ve been getting weekly immunoglobulin infusions for 4 months now and it’s become routine (prior posts about this treatment can be found here and here). Not only routine, but to keep the success going, my superstition causes me to keep everything identical each time. I drink 4 liters of water the day before, the day of and the day after my infusions. Every Monday, I tidy up, run the Roomba and take a shower. I drink electrolytes, make my chicken and vegetable soup and don’t take any supplements. I take 3mg Prednisone, remove the saline bag and Gamunex from the fridge and wrap the fluids in my heating pad. When my nurse arrives, I get into bed and she hooks up the IV and sets the pump. Half an hour later, I take 650mg Tylenol, 25mg Benadryl and 10mg Zantac and then, before the Benadryl kicks in, I prep the Gamunex (I have to suck it from the vial into a fat syringe, which is surprisingly hard to do and painful on the hands). After the saline has been running for an hour, I insert 4 subcutaneous needles into my thighs. I could use wider tubing (for a faster infusion rate) or fewer needles, but, again, I’m sticking with what works, even if it’s not the norm for other patients. For the first few months, I did change where I inserted the needles, trying different areas on my belly and legs, but now I stick with the inner thighs which proved the least painful for me. I then fall into an antihistamine-stupour sleep and my (wonderful) nurse leaves once my husband gets home. In theory, she could leave as soon as she has inserted the IV catheter, which would be a half hour max, but because of my history of reactions and anaphylaxis, she’s extra cautious. By 8pm, I can disconnect the IV, remove the infusion needles and go downstairs to make dinner (this treatment makes me ravenous).


When I first started infusions, I would have to take more Tylenol and Benadryl at around 9pm, my sleep would be horrid for a few nights from the steroids and I’d be dragging and headachy for at least a day afterwards. Recently, besides sleep, which will be my nightly nemesis forevermore, it seems, I haven’t had any problems. No need for extra meds, no dragging, no headache (except later in the week, which could be because I drastically drop off my hydration). In fact, it almost feels like my body is eagerly drinking up the infusions each week. In fact… the last 5 or 6 weeks have been… so nervous to say it (cover your ears, gods!)… good. Some of the best weeks I can remember. I feel freer — less restricted by pain, less confined by finite energy reserves, able to push boundaries without fear. My headaches have been more infrequent, my skin is better, my debilitating neuro symptoms have been more intermittent. I’ve been driving to nearby appointments again and I’ve been able to talk to the point of being hoarse, but without a weak voice. This last thing is very exciting to me.

My pilot brother was here on a layover and I was able to talk and laugh with him for almost 6 hours. My voice was tired, as if it were an unused-muscle, but it wasn’t weak in that way it’s been for years where I could barely contract the muscles to get the air past my vocal cords (or something). I was most definitely dizzy and deflated from the energy expenditure (my brother is a bottomless well of entertainment and conversation), but I didn’t have payback. Before he came, my brother texted me and said, “I’d love to see you, if only for an hour” and I realised how much worse I’d been the last time he visited in 2014: I remember wilting weakly an hour into our animated discussion. What glorious freedom to ignore the lightheadedness and tightening muscles, ignore the raised heart rate and blurring vision (because I’m still very far from normal), and not be terrified of repercussions. To have the option to push through! In the past, I’ve crawled to my room mid-visit — not out of cautiousness, but because there was no other choice and I always feared becoming permanently worse if I strained too much against the restraints.

This uptick could be because of a liter of IV fluids each week — it would explain why I’ve been having bad days later in the week — but I don’t think so. I usually feel kind of puffy and swollen afterwards and my blood pressure hasn’t increased at all; it stays steadily around 85/45. We’re considering experimentally doing some infusions without fluids and see how I get on, but I’m hesitant because, like I said, I like to keep everything consistent. Also, in the past I’ve asked so many doctors to help me with a trial of weekly IV fluids to see if it would help dysautonomia symptoms, now that I have them, I don’t want to give them up.

I want to mention one small thing that I’m incredibly excited about, which will sound so insignificant to most people. About a year into this illness, a few things happened to my body seemingly overnight and they always make me quite sad. The whites of my eyes changed colour, vertical ridges appeared on my once-smooth nails and I became allergic to my platinum engagement ring, which had been my grandmother’s and I’d worn 24 hours a day for years. Every so often over the past 3 years, I would put my ring on and, after a few days, I’d develop big itchy, sore bumps and discoloured skin and have to take it off again. I tried again just after Christmas and, 4 weeks later, I’m still wearing it with no problems. I want to add loads of exclamation points to this!!!!!! For me, that is so much more encouraging than IgG blood tests in the normal range or being able to walk more steps each day. My body has stopped rejecting something — a precious thing — that swiftly angered it over and over for so long. Rejoice. 🙂

Feeling emboldened, I asked my doctor if we could increase the dose or the frequency of my infusions or if I could add in a new treatment (antifungals, antivirals etc.). She said no — and I quote: “You are exactly where I want you to be.” That is so great to hear and such a reversal from my usual position of moving much more slowly than my doctors would like. She wants to continue my treatment indefinitely, raise my IgG levels as much as possible and then retest for infections in about 6 months to get a new baseline.

Insurance coverage always scares me; I’ve heard such horror stories of the battles to get treatment approved and, even after approval, actually paid for. My infusion bills were $943 for the first 3 months and I feel very fortunate that it’s so low. SCIG is the only thing that I can definitely say has helped in 4.5 years of being sick and, after 6 doctors refused to help me get the treatment, I feel immeasurably grateful to Dr. I for not only suggesting IVIG herself (I didn’t bother to ask because I’d given up at that stage), but allowing me to start on such a low dosage and increase slowly. No immunologist would have agreed to this. Yesterday I got this letter and almost wept (with joy). Thank you to the good doctors and nurses, to everyone that donates plasma (especially the broke college students) and even (in this case) to the all-powerful insurance companies who help perpetuate this dysfunctional healthcare system.



I wrote this post on Thursday, the day after I’d driven to the dog park by myself, feeling victorious, and delighted my Bowie by walking further around the path than I have since being sick. I was still doing okay the next day and wanted to finally update everyone on my exciting progress.


I’m not saying the chronic illness gods read my blog post draft and decided to tip the scales in the other direction because that’s just crazy nonsense, everyone knows that. But I did wake up not very good yesterday and I’m even worse today, with a bad migraine. Don’t get me wrong, I constantly remind myself that my husband used to have to wash my hair, but it’s still difficult to let yourself get a little bit excited (and in reality, “get a little bit excited” in my world means I’m thinking, “I’M GETTING BETTER! THIS IS THE YEAR! I’M GOING TO LEAVE THIS DISEASE BEHIND! I’LL BE FREE!”) and then have such a harsh reminder. Maybe the difference now is… I’m not scared.

Title Credit


Update… Aborted. Again.

I’ve been trying to write an update for so long. It’s been 5 months since my last one. There’s been so much that I wanted to document, that it started to feel like a Herculean task to catch up and my symptoms have been such a rollercoaster, that I never seem to find an opportunity. When I have some respite, I cook, bathe, deal with insurance and appointments, tackle laundry, play with my dogs, sort through finances etc. Aaannd… I just hit a wall. Just like that. As I typed, I could feel my brain clogging up. I picture all the little ATP molecules grimacing, gasping and dragging their feet like the characters at the end of Stephen King’s story, The Long Walk, dragging themselves along until collapse is inevitable. It’s a shocking feeling. Mentally, I was really clear for about an hour this morning. Felt like I could write. Dreamed up grand plans for my day (make granola! call a family member! blog post!). I answered a few emails, talked to my husband a bit and then wrote this… And it’s gone.

My neurological symptoms are horrific. “Brain fog” is the best of it. I’d take lack of concentration, not being able to find words, memory problems any day over what I’ve been experiencing this year. It feels like physically–physiologically–my brain grinds to a halt. My eyelids get heavy, my vision gets blurry, my ears roar, I start slurring. As I’m writing this, it’s getting worse and there’s no pushing through. My body feels okay, my stiffness, weakness and pain levels are manageable this morning, but I can’t push through this neuro stuff. Even if my body feels capable of going to the park, my brain insists on being in bed with ear plugs and eye shades. I can’t even watch dull tv or listen to a meditation. It’s incredibly frustrating and quite alarming. And, in a clinical way, I am fascinated by the trajectory of my symptoms over the past four years.

Year 1 was horrific viral, malarial, drenching sweat, nighttime hell and constant chills. That ended for the most part in Year 2 and became predominately “nightly flu” and pain, pain and more pain. Year 3 was the best of times and the worst of times: a bedbound, suicidal winter (when I finally got the permanent ME/CFS sore throat) turned into a much more stable spring and summer after my pain eased up. Year 4 started in a deep, reactive crash and became the year of crippling neurological symptoms. Year 5 (which started at the beginning of this month) so far is all over the place. My main focus is to work on the symptoms that have been with me throughout all of these years: sleep dysfunction, headaches, hypotension and infections. Plus, social contact would be good.

I have to power down now. The long-awaited update will come soon, I hope. I have so much to say.

Finally Starting IgG Infusions.

After 13 months of buildup, I’m finally scheduled for my first IgG infusion. Dr. Chia recommended I get IVIG (intravenous immunoglobulin) in August, 2014. When I came back to Seattle, I asked my GP about it and she said my total IgG wasn’t low enough (allopathic guidelines say total IgG < 400mg/dL) to warrant therapy. I asked my rheumatologist about it and he said because I have no evidence of persistent infections, I’d have to get an antibody vaccine provocation. I’m sure there’s a name for this, but, essentially, you are given a vaccine and then they look for an appropriate rise in antibody titers to that vaccine. If your body doesn’t mount a response, they can approve IVIG. Well, of course, I’m never getting a vaccination again, so that’s out of the question. I asked my main ND, Dr. W, and she said she didn’t have the ability to order it, but suggested oral IgG, which I never started because… another supplement, ugh. So, I’d given up on it when I went to a new ND, Dr. I, and I didn’t even think to mention it. After reviewing all my labs, the first thing she recommended was IVIG and, just like that, she got it approved. But… not so fast. That was 10 months ago and there was a lot of work to be done.

(As an aside, I do wonder if I’ve had low immunoglobulins my whole life and nobody looked into it. Or maybe it waxed and waned. I had chronic bronchitis, pneumonia and asthma as a child and, as an adult, got a chest infection pretty much once a year–probably more when I was smoking–but never thought this was unusual. Here’s a short article about one girl’s SCIG from infancy. It has some photos of infusions.)

Before trying IVIG, we decided I should try SCIG (sub-cutaneous IgG) because there are fewer side effects for most people. Before SCIG, I needed to test out the medications necessary to stave off anaphylaxis, aseptic meningitis, migraines and a host of other issues that can develop. Before testing the pre-meds, I had to make sure I could handle IV saline infusions since the last one I had caused a leaky anaphylactoid reaction. Before trying IV fluids, she wanted me to be on bioidentical progesterone, pregnenolone and DHEA, not only because my hormones are low, but also because there is evidence that hormone therapy can calm reactivity. And all of this has to be danced around my menstrual cycle because I’m somewhat reactive during ovulation and extremely reactive during my period. We also had to wait for me to get my nerve up because so much of this is dependent on my comfort level and, when anaphylaxis could be involved, I’m never comfortable.

I have friends in mast cell groups who “anaphylax” often, repeatedly, sometimes daily. I can’t imagine this. There are different levels of anaphylaxis, so I suppose these could be lower level reactions, but my episodes of anaphylaxis were full-blown and very scary, mostly because of the difficulty breathing. I really thought I would die and I probably have some PTSD from those experiences. No amount of sickness scares me as much as having a sudden anaphylactic reaction that kills me. I don’t want to get meningitis or be saddled with chronic migraines like my friend Jackie, but those are not at the top of my list of fears.

Having said that, I pay attention to comments like this since I, too, once had a CSF leak from a lumbar puncture and it was the 10 on my pain scale to which I now compare everything else. IVIG can mess you up:


(FYI, I found this website with tons of allergy information and graphics that might be interesting.)

So, I’ve been on topical, compounded hormones for almost a year and they haven’t raised my serum levels much, but I think they’ve helped with sleep (they also cause greasy skin and hair, like I’m going through puberty, but I’m willing to put up with that). At the beginning of this year, I was reeling from the terrible nocturnal reactions and tongue swelling I had been having, so I wasn’t willing to try anything new. Finally, in May, I got around to testing a tiny bag of IV saline (it went fine, although the whole appointment and clinic visit was a total shitshow which lead me to write two long emails to my doctor. I came very close to not going back, but I really want this treatment). Then in July, I had a full liter infused over 6 hours (a very long time for 2 bags of saline). Everything went fine, no problems (but no boost in blood pressure or energy, either), which meant it was time to schedule SCIG, but, once I started researching in earnest, I realised that there were so many questions I needed answered.

IVIG is often done in a hospital setting if the person is high-risk. I would prefer to have more than just a nurse present if I went into shock (and, by all accounts, nurses’ competency levels are highly variable). My doctor didn’t know how to get this done because the company with which she works does home infusions; she recommended I ask one of my MDs for help. More time ticked by while I emailed my GP (who has only met me once), my endocrinologist and my rheumatologist (both of whom have only met me a few times) for help with this. They all said no. I talked to the infusion company (who have been incredibly helpful thus far) and they offered to do it in their “infusion suite”, but there are no doctors present and their protocol is to call 911 if there is an emergency. Well, I live a few minutes from a fire house and an emergency room, so home seems just as safe as the infusion suite, if not more so since my husband, who is far-too-intimately acquainted with my history, can be there.

Scrolling through Facebook groups, I realise I have to learn how many injection sites I’ll have and whether to use my belly or thighs and the needle size and how many ml you can put in any one area and leakage, hardness, weals etc. etc. My good friend, who is braving his way through gruelling IVIG treatment, has been giving me advice every step of the way, which is invaluable when your doctor doesn’t tell you exactly what the process is or the importance of hydrating or the effects of IgA.

Different brands of IgG have varying amounts of IgA in them. In general, lower IgA equals fewer reactions and, if blood tests show that you have very low IgA or anti-IgA antibodies, you will qualify for the IgA-depleted IgG brands. Isn’t this something my doctor should have mentioned? She wrote the prescription for Gamunex and I asked her if she would consider Gammagard or Hyqvia, both of which have lower IgA. but she said it wasn’t necessary. And she may be right, but wouldn’t you want to use every tool available to keep your highly-reactive patient as safe as possible? My IgA has been slightly low in the past, so, right before I was meant to schedule my first infusion, I asked my doctor, “Can you test me to see if I have anti-IgA antibodies?” and she said yes. Doesn’t this seem like something that should have been done originally without my asking, considering my history?? Maddening.

The IgA test was meant to take a week to come back and I didn’t get the results for 3 weeks, so here we are in September. One of the IgA subclasses was low out of range, but I didn’t have anti-IgA antibodies, so I couldn’t really make a case for changing from Gamunex. And I wanted to do it as soon as possible rather than wait until after my next period, which would put us in October, so I scheduled it for this coming Tuesday.

My doctor wants me to take 2 Tylenol (Paracetamol), 2 Benadryl and 3mg of Prednisone (Prednisolone) before my treatment. I needed to test these premeds because last year when I took Prednisone, I worked up very slowly to 3mg, I only ever take 1 Tylenol at a time and I have been VERY sensitive to Benadryl since having M.E.–plus I’ve never taken the combo. I realised my EpiPens were expired and so were my two boxes of Benadryl and my emergency Prednisone. It took more waiting time for new prescriptions to be called in and finding a good day for my husband to pick them up. When he did, I realised they had given me 10mg pills of Prednisone rather than 1mg (always carefully inspect your pills!) and he had to go back to the pharmacy for a fourth time in a week. Poor guy.

Last week I tried 1 Tylenol, 1 Benadryl and 1.5mg of Prednisone (using my expired stash). About half an hour later, I got a tight chest. Not enough to scare me, but enough to put me off trying more Benadryl. Then I got very shaky and drowsy and had low blood pressure. After I slept for about an hour, I was incredibly thirsty and hungry and then, about 4 hours after taking them, I felt better than I have in a while and was chatty and good-humoured. Success.

Last night I tried again, this time with 2 Tylenol, 1 Benadryl and 3mg of (fresh) Prednisone. I couldn’t bring myself to take 2 Benadryl. The good news is, I didn’t get the tight chest and shakes this time, I just fell asleep for an hour. The bad news is, I didn’t feel good afterwards at all. I had a headache, my eyes and lips felt swollen, I was completely parched and felt really out of it and hungover. But, this is HUGE for me. It is so incredibly exciting to take a bunch of medications and come out unscathed. I’ve been wanting to test this for ages so I have some confidence that, if I’m given IV Benadryl and/or steroids in the event of an emergency, I’ll be okay.

A few final hurdles: I’m scrambling to get two blood draws on Monday before starting SCIG. Dr. W has been trying to get me to do regular “hydrotherapy” for a year and a half. It’s basically hot and cold towels over my torso and back, coupled with electrical stimulation (instructions for doing it at home can be found here). I never wanted to expend the energy until she told me about a patient of hers with hypogammaglobulinemia whose IgG levels came into the normal range after 6 weeks of hydro constitutionals. She was willing to test my total IgG before and after if I did this experiment. I love quantifiable evidence! So I started in August and, even though it’s only been 5 weeks, I want to get my levels tested again before starting SCIG.

The second thing is a babesia test. I’ve been asking my ND about this since June–in person during appointments, in email to her and also to her assistant, who keeps saying she has to get the doctor to sign the form–and can’t seem to get anywhere. They say yes, but it never happens. How hard could it be to sign a requisition form?? Her last message to me said I could get my blood drawn if I make another follow-up appointment. Are you kidding me? That seems downright cruel when we’ve discussed this at my last 3 appointments and she only works two days a week. I talked to the director of Igenex, the lab that does the testing, and he said I should definitely get it done before SCIG, so I finally just ordered the test kit myself and I’m going to bring it to my other doctor, Dr. W, on Monday and beg her to do the blood draw along with the total IgG. I don’t understand why everything has to be such a battle. It’s exhausting and infuriating.

I’m trying to not be annoyed at the difficult communication with my SCIG doctor because, not only is she the only one getting me this treatment, but she was willing to start me at 1 gram the first week (unheard of), building up to 5 grams over 5 weeks. She was also willing to prescribe saline infusions along with the treatment. Only 500ml each time, but every little bit of hydration helps mitigate side effects. I’m deeply grateful to have someone willing to do that when an immunologist wouldn’t even have a conversation about it.

Wish me luck. I’m going to receive all the supplies by courier on Monday and then Tuesday afternoon a nurse will come over, start the drip and show me how to do the sub-cutaneous injections. I believe after that, I’m on my own. Or, maybe because I’m getting IV fluids each week, a nurse will have to come, I don’t know. I will take Zyrtec and hydrate like mad the days before and after… But, friends and family, I am very scared. Even though it’s SCIG and not IVIG and even though I’m starting at a laughably low dose, I’m still scared. I will eat fairly low-histamine in the next few days and do my breathing exercises and meditations before, during and after treatment, but still… I want this to be the beginning not the end. Are my affairs in order? Do you all know how much I love you? Remember: when I first got sick and thought I was dying, I wrote down directives and requests. Husband, remember: the notebook in my bedside table.

Now everyone knock on wood for me and spit over your shoulders. Toba toba.

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.

Title Credit