The TRAP Trial Begins with the Lifting of a Magic Latch (Part 5 of Ms Lab Rat’s Latest NIH Adventure)

At the close of my most recent installment of my chronicle of a Day-In-The-Life of an NIH Lab Rat, I was about to enter the phlebotomist’s cubby.
You notice I then abandoned the narrative for blog posts about light subjects such as breakfast and…biopsies. Needles. I just can’t get around them.
Gentle Reader, I am not so fond of needles. You would think, after over twenty years of self-injecting medications—once a month for Zinbryta, once a week for Avonex, once a day for Copaxone—I would be jaded by now. I am not. I squirm when I see an injection on TV. (For me, the most memorable moment of the very memorable movie Traffic occurred when the daughter of the anti-drug Czar smiles drowsily as she shoots drugs through a needle into her arm. I have yet to smile drowsily while injecting. It’s a goal.)
As I took a seat in the phlebotomist’s chair, I couldn’t help but notice a thank you note strategically posted across from the hot seat. Had I been a strategic blogger, I would have taken a picture of the note so it could later serve as the featured image of this post. But that’s not the person I am, nor the person I want to be. There was a brief period of time when I used to collect experiences for my blog. Once I realized I was collecting experiences instead of experiencing experiences, I backed off. So that’s my excuse for why there is no photo of the thank you note, or even a transcript of it. I can only offer you a paraphrase. The note went something like this:

Dear Mr. So-and-So,
Our son has undergone intolerable challenges. Somehow you managed to make the whole ordeal fun for him, and we can’t thank you enough for being a light in this very dark time.
With gratitude,
Mom and Dad of a Very Sick Vulnerable Boy

This note comforted the hell out of me. And put me on notice that I’d better not be wimpier than the Very Sick Vulnerable Boy.
By this point in my fairly vast experience with a wide variety of phlebotomists, I’ve learned that most are ordinary people, whose needles puncture flesh. But there are a few phlebotomists—a select few—whose needles create the sensation, not of a puncture, but of a lifting of a magic latch. So far, the phlebotomists I’ve encountered at the NIH fall into this latter category of elite magicians.
I did not ask this fellow to tell me more about this note he had on display. I’ve found, the hard way, that it’s best not to get personal with a health care technician when they are about to get to work. One time I asked a nurse, How was your weekend—a
seemingly innocuous question—and tears sprang to her eyes. The next thing I knew, she was telling me how her little boy had been out riding his bicycle right on their block when he got hit by a car. She then connected electrodes to the wrong place on my foot, and I endured 15 minutes of non-therapeutic electric shocks. Served me right.
So no, I did not ask this phlebotomist to tell me more about the little boy in the note. I was rewarded for my reticence. He told me—they all tell me—that I have good veins. And then he magically extracted blood from those veins, without my feeling a puncture, but rather, a lifting of a magic latch.

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Breakfast Break: MS Style (part 4 of Ms. Lab Rat’s Latest NIH Adventure)

When we last left off, I, Ms. Lab Rat, was sniffing the sickly scent of powdered sugar as I passed the by-now stale gingerbread houses on display in the secular cathedral that is the NIH (National Institutes of Health.) I had time to kill before my Phlebotomy appointment, so I took the elevator to the second floor cafeteria, which has an excellent salad bar. And discovered I was too early for salad.

Here’s the deal with my new Wahls-inspired MS diet: the foods I used to associate with breakfast are off the menu. No processed foods, no gluten, no grains, no milk (bye bye breakfast cereals,) no eggs, no cheese (bye bye omelets.)

Here is a picture of what breakfast looked like for me today: IMG_9271

You’re looking at bok choy and garlic escargot simmered in homemade chicken broth, topped with kimchi and dulce. The Wahls Diet calls for the consumption of four servings of leafy green veggies a day, at least four servings of colorful fruits and veggies, a meat, a touch of seaweed, a bit of something pickled. The Wahls Diet is also very very big on homemade bone broth. So this breakfast covers pretty much all the bases. (If I were a true purest, there would have been a little knob of organ meat floating around in the bowl, too. But that’s the thing about the Wahls diet. Or maybe any diet? You can always feel you’re not quite up to par.) This breakfast was yummy, by the way. But this kind of breakfast is not easily obtained on the road. Not even in a hospital. (By the way, what’s up with hospital food? Why are there so many unhealthy choices? Topic for another blog.)

Here’s a fuller, indeed cluttered picture of what breakfast looked like for me today, when I tell the whole complicated story of my MS maintenance:

IMG_9272

You are still looking at my pretty bowl of healthier-than-thou breakfast food. You are also looking at the supplements required for the clinical trial of the Wahls Diet:

5,000 IU Vitamin D3, 1 t cod liver oil, 5000 liquid vitamin B12, 1 mg folate, multi-vitamin.

Then there’s all the stuff I have to take for my funny bladder:

AZO, macrobid, and some other antibiotic I’ll be finished with at dinner.

Then all the stuff I choose to take for my self-designed Ms Lab Rat trial:

3x 100 mg Biotin (which I am hoping will eventually fix my bladder problems and get rid of three of the items above), 500 mg Hemp oil, local hemp oil, glorious hemp oil (which has helped me sleep and dream after many sleepscarce, dreamless years), 5 mg Lithium (which I thought was doing a fine job as a mood stabilizer, though I just learned that what I take isn’t anything like a mood stabilizing dose. So let’s call it my placebo.)

This is a lot to keep track of. When I graduated from the Swank Vs. Wahls clinical trial, I got a certificate (no joke) and a private viewing of a 20 minute video of Dr. Wahls that just served to delay the seven hour drive ahead of me. No t-shirt. The only remotely useful thing I left with was a booklet to help me keep up with all the details of living in a Wahls Diet world. (I had rallied hard for an app, but there isn’t one. Yet.)  For a few weeks afterward, I kept filling in little circles every time I popped another supplement, or finished another serving of leafy greens. But eventually I ditched the booklet. I want to feel a little less obsessive, a little less persnickety. Either that, or I’d already assimilated all the expectations. My brain had become the diet app I’d been asking for.

The morning of my TRAP trial, I realized I was not going to get a Wahls breakfast, or Wahls-ish breakfast before my blood draw. I guzzled a “green” drink I purchased from a vending machine and took the elevator down to Phlebotomy. A lovely woman handed me a white stub with a number. As I glanced down to read 32, she called, “Thirty two.” It was the Christmas holiday. I was the only patient in the waiting room. I filed past untouched trays of cookies and two pots of coffee and entered the orderly hive of numbered white cubicles, wondering if I’d recognize my phlebotomist. I had been there many times before.

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Teetering on the Verge of TRAP (part 3 of Ms. Lab Rat’s Latest NIH adventure)

I didn’t jump into the TRAP trial eagerly.

When I first got a pamphlet from the National Institutes of Health advising me of my eligibility for a new study, I thought perhaps there’d been some mistake. This study was designed for people with progressive MS, the most serious form of multiple sclerosis, a most serious degenerative disease. That couldn’t apply to me. I was an MS success story. I was Ms. Lab Rat, the patient who had cleverly evaded a continued barrage of MS lesions by taking a fortuitous risk on an off-label drug. In over a decade of respite from new inflammation, neurologist after neurologist  told me I was doing everything right, told me I was doing great. None of them mentioned I was slipping into the progressive form of the disease.

And yet.

I myself had not been satisfied, had not felt I was doing everything I could to stop or slow the ongoing catastrophe that is MS. As much as I was grateful for the drug I was taking, I thought for sure that the drug had worked more efficiently when I first took it back in my late 30’s, when it was delivered off-label via IV infusion. The form of the drug that I later took for an NIH study, the form that eventually hit the market as Zinbryta, came in a little tiny vial, not a whopping big IV bag, and felt that much less miraculous. Sure, I was still avoiding MS relapses, but I was also no longer swimming for hours or taking long hikes. Or even short walks.

The cover of the NIH pamphlet asked, Is your MS progressing, in spite of treatments?

I wasn’t exactly sure.

Wouldn’t some neurologist have told me if my MS had become progressive?

One would think.

Would I have wanted them to?

Hell, no. Back in 2005, I fired a neurologist for telling me my MS was never going to get any better. Which started me on the search that led to Dr. Bielekova, who actually did make my MS get better, without ever making any promises that she could. She had prescribed the drug she was researching with great reluctance, because I’d been insistent. She’d warned me there was no guarantee of success. Yet it had been a success.

As I set the pamphlet down I saw Dr. Bielekova’s name was attached to the study. While I was still mostly in denial that the pamphlet could apply to me, I did have friends with progressive MS, friends who had lost their employment, much of their mobility, and in the worst case, much of their memory. Connecting them to an NIH study could give them access to some of the most nimble minds examining this insidious disease. I picked the pamphlet back up.

The trial proposed to measure the effects of four established medications, currently treatments for other diseases, to see if they could ameliorate the effects of MS. The drug that had changed the course of my disease had originally been used to keep the immune systems of organ transplant patients from attacking the transplanted organ; Dr. Bielekova had guessed that perhaps it could likewise be used to keep the immune systems of MS patients from self-attack. Clinical trial patients like me had helped to prove her theory correct. Apparently she was looking to repeat this success.

The pamphlet didn’t make any claims of how any of these four drugs might potentially help a person with MS. Instead, it went into detail about potential side effects. Which was all very above board. But not very tempting.

Furthermore, the timing of the pamphlet was off.

The pamphlet arrived in the spring, a time of hope. I had just enrolled in a clinical trial examining the effect of diet on MS. Wouldn’t it be wonderful if a teaspoon of cod-liver here, a sprig of seaweed there, would be all it took to fix me? I could only do one trial at a time. Why not stick with the wholesome one? The one without potential side effects.

When I called the number on the pamphlet, I disclosed my participation in the diet trial right away. I explained I was asking… for a friend. The doctor I spoke with was unfamiliar to me, but warm and sympathetic. She urged me to let the NIH pay to fly me out anyway, just to keep  updated on my progress with Zinbryta. I had nothing to lose beyond a wee bit of spinal fluid, which I would easily replenish. If there were signs of progression, I would qualify for the study. If it turned out I wasn’t progressing, well, that would be good information to have.

And that was how I’d wound up back at the NIH late last June for a spinal tap.

The results came in during the July 4 holidays. I got a voice mail message that I did indeed qualify for the study. The unspoken implication was clear. I could consider myself as having progressive MS. My calls to the clinic went unreturned. I blamed the holiday. Then summer vacations.

I didn’t want to admit to myself that I was devastated. I decided to look on the bright side. While the Swank Diet I was on for my current clinical trial wasn’t yet working any wonders, maybe its competitor, the Wahls Diet, would do the trick.  And if neither diet reversed my symptoms, at least there would be TRAP to turn to. If only someone from the clinic would return my calls.

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TRAP (part 2 of Ms. Lab Rat’s Latest NIH adventure)

The vast lobby of Building 10 of the NIH was nearly vacant of the usual international mix of medical professionals and imperiled pilgrims, yet it felt cluttered. This majestic bastion of scientific research had been stuffed with numbered tables bearing garish gingerbread houses, presumably made by the in-patients and staff. It looked like a pop-up church raffle. I glanced past the hapless man marooned at the Welcome Desk and noted that the coffee shop was now barricaded by scaffolding. The scent of coffee had been replaced with insidious notes of powdered white sugar. I wondered if perhaps my system of always accepting the first appointment of a given span of available dates would finally let me down. We were three days out from Christmas. The speculation on the van was that the leading physicians would still be on vacation. I didn’t buy into that. I expected to see leading physicians. Then again, I’d also expected coffee.

I ducked into the area on my right to fill out the paperwork for meal reimbursements. Over the years, the reimbursement office has retained the right to perpetuate various iterations of needlessly awkward exchanges. The first few years I’d gone there, the cashier’s desk was an inch or two too deep for the cashier to actually reach the exchange window to grasp a lab rat’s ID or to pass a lab rat some cash. It added a bit of tension, a bit of comedy, to every exchange. After a few years of these capers, the cashier figured out she could use a pincer device to bridge the troublesome gap. Her victory was short lived. By my next visit, the entire office was moved. By the visit after, the “short-armed” cashier was gone.

The tradition of inventive obstructions was still in full force, I noticed. There was a sign in front of the office that receives reimbursement forms which instructed all form fillers to stand at a certain distance in front of the glass door, and further warned that those who did not stand would not be seen. In other words, Wheelchair Users, Begone.

Furthermore, the very layout of the office was designed to prevent eye contact, even with compliantly standing non-wheelchair users. The L-shaped desk for the sole employee in the office was set back and to the side of the glass door. The computer was placed along a wall at a ninety degree angle from the door, so that the occupant of the office effectively had her back to the door every time she looked at her computer. Once again, the office had been created to make it structurally impossible for the employee to do her job effectively.

I wish I could say this office is an anomaly in the NIH. It is not. There are doors in the MS clinic without wheelchair accommodation. If that’s the NIH plan to stop MS progression…it isn’t working yet.

The only other pilgrim there was a man sprawled out on a chair. Had he been conscious, I would have asked him if he needed me to signal to the functionary behind the glass door. Instead, I waited for the functionary to complete her personal phone call, then check her computer screen, then finally swivel somewhat to notice me standing the appropriate distance from the glass door, like a good wheelchair-free pilgrim.

She waved me in.

I used to feel unworthy of meal reimbursements. But that was before the drug the NIH tested on me came out on the market, and my monthly deliveries came with an invoice of seven thousand four hundred and something dollars per month.

I handed in my clipboard, feeling entitled to every last penny, darn it, and headed for my appointment at Phlebotomy.

The acronym for this new study? TRAP.

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Addicted to Trials (Part 1 of Ms. Lab Rat’s Latest NIH Adventure)

My name is Ms. Lab Rat. I have multiple sclerosis. I am addicted to clinical trials.

It had been 32 days since I’d finished my last clinical trial in Iowa City when I slipped out of a white van on a cold December morning and surrendered my coat and my purse to the jocular security crew at The National Institutes of Health in Baltimore, Maryland. When asked by a cheerful ex-navy, “Have you been here before?” I had to smile back. I’m terrible with numbers, but by my feeble estimation, I’d been to the NIH 44 times before: once a month for three years during the trial for Zinbryta, once every six months for the three years it took for the FDA to approve Zinbryta, plus twice for initial trial visits. Gentle reader, chances are your brain is less riddled with lesions than mine. You do the math. Numbers aside, I think we can all agree; I’ve been a regular.

Back when I started the Zinbryta trial, when the drug was still fairly new to me, my life had been much more limited by my disease. I was a regular at my drug store, a regular at the places I volunteered. No one paid me to hang around. Zinbryta stopped the raging inflammation that had peppered my brain with lesions. My relapsing remitting multiple sclerosis stopped feeling so…unremitting. And gradually, I was able to get small but super-meaningful jobs. First I was hired to host creative writing sessions with a uniquely brilliant group living at an upscale assisted living center. I am in awe of the supportive creative community we have maintained. Then I was hired to teach writing classes to radical, relentless, radiant young artists at a celebrated arts college downtown. The younger generation fills me with hope for a more just, more equitable, more dazzling future. Through the years, I have maintained the same prolific community writing workshop. We all publish. Some of us publish quite a lot. Zinbryta has allowed me to expand my identity beyond MS patient, to teacher. When the security guard handed me my one-day NIH ID, you’d better believe I thanked her.

I hopped back into the white van with a couple from Georgia. The husband had spent the trip describing the career he’d had to abandon. “I want to get back to work, do what I can from a wheelchair. But first I’ve got to get this cancer under control.”

I could relate to his frustration. I could relate to his hope. Zinbryta has helped rein in my MS. It’s been necessary. But it hasn’t been sufficient. When we reached good old Building 10, I hopped out of the van. I was eager to get my MS under control.

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The Ordinary Woman in the Airport

 

My husband and I were hanging around the welcoming area of CVG, watching for our son amid the parade of newly arrived travelers, when I recognized someone I had never seen before. I recognized her deeply, with every thwarted nerve in my MS racked body.

The woman was ordinary enough; middle age, medium build, medium brown hair cut to a medium length. But her gait…wasn’t quite ordinary.

Don’t get me wrong, the woman was moving about as fast as any of the other newly arrived travelers. But it was clear to me that she was expending about ten times as much effort to do so. Her legs clearly had their own agenda; they wanted to dangle. She was forcing every step; her legs dragged and flopped but ultimately kept flopping in the right direction. And because of that, because she could see she was closing in on the greeting place, she had a big smile on her face—not a forced one—a smile of absolute triumph, like a marathoner approaching a spangled banner.

I recognized myself in her smile; I knew the depth of her achievement. I used to walk that walk, or a version of it, every month on my way home from another clinical trial visit to the NIH (National Institutes of Health) where I would receive another dose of the MS medication now marketed as Zinbryta. This drug has kept me walking, albeit with great effort.

Consider this post my small effort to remind you, gentle reader, that NIH is there for you, finding cures to diseases you may be unaware exist…until one day that disease strikes you, or a family member. Funding for the NIH is in danger right now. And if that doesn’t seem a relevant topic to you right now, congratulations. But good health is transient. You have to work to keep it. And sometimes, despite your best efforts, it slips away.

Please do what you can to maintain your health. Do what you can to maintain the NIH.

Keep smiling; ordinary people can achieve extraordinary things. Just think of that woman in the airport. Here’s the secret behind her smile: sometimes it takes ten times the effort to keep moving forward, but when the goal is in reach, there is ten times the satisfaction.

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Wahls Elimination Diet vs Swank Diet: Which Is the More Effective Treatment for MS Related Fatigue? Ms. Lab Rat jumps into the maze.

Some Background (faithful readers can skip to paragraph 5):

As my faithful readers know, I am a machine with faulty wiring. Multiple Sclerosis has somehow managed to convince my T-cells to attack the insulation that surrounds the nerves conducting all the information my body needs to function optimally. This insulation is called myelin, and my myelin is ratty with scars. (Multiple sclerosis=many scars.)

When I got the diagnosis, I refused to accept my fate. I tried the first medication I was offered. And when that didn’t work, I tried a second. And when that didn’t work, I entered a clinical study of a new medication, one, I was told, that really made a difference. But as will happen 50% of the time with clinical studies, it turned out I was assigned to the control group. I didn’t get the new medication. I got a placebo. And I got more scars.

I not only tried new medications, I tried new doctors. (I moved around a lot, at first, so that part could not be helped.) When my fourth neurologist gave me the dour news that I was doing very badly, and could expect to do worse, and then much worse until I died, well, I switched to a cheerier doctor. Who gave me the same dire news, but with a big smile. I dumped her, too. Instead I found a brilliant researcher, Bibiana Bielekova. Researchers are always looking for better ways to do things. So am I.

Long story short, I talked Dr. Bielekova into letting me try an off-label drug that worked with the immune system, rather than fight it. Daclizumab works by boosting the population of Natural Killer Cells, which function like the good cops in the Wild West of my immune system; the Natural Killer Cells keep the rouge T-Cells, or bad cops, at bay. Daclizumab worked. The T-Cells stopped attacking my myelin. Eventually, the National Institutes of Health (NIH) funded a study of Daclizumab. I was lucky enough to join the safety arm of the study, so I was assured a constant supply of Daclizumab. In the last ten years, this medication has been so effective, the T-cells have only once managed to create a new scar. Earlier this year, the FDA apporved Daclizumab under the name Zinbryta. On the day I injected my last dose of free study medication, I was accepted into a new clinical trial.

Faithful readers, jump in here:

Finding a drug that stabilized my MS only solved half of my problem. While my T-cells have stopped chewing on the fatty myelin that insulates my nerves, the many scars created by years of insatiable gobbling still interrupt the signals of my central nervous system. I have to cope with fatigue, pain, lack of coordination and balance, and a digestive system that’s out to lunch. Oh yes, and a brain that continues to shrink. You would think, then, that a person as proactive as I am would have immediately acted when I saw a very convincing TED Talk by a smart researcher who overcame an even worse case of MS than mine. Like me, Dr. Terry Wahls took the latest greatest MS medication. And like me, her MS only got worse. Dr. Wahls soon found herself confined to a tilt-recline wheelchair. Unlike me, Dr. Wahls is a physician. She read the latest medical research about diseases in which brains shrink. She read studies in which animal brains had been protected from shrinkage using fish oil, creatine, and co-enzyme Q-10. She started taking human proportioned dosages of these substances, and started getting better. This was her first round of self-experimentation. Slowly but surely, she tweaked her diet to include and exclude certain nutrients and ultimately found herself out of the wheelchair, biking to a full day of work as a doctor, and, of course, promoting the diet that saved her. She managed to get the Multiple Sclerosis Society to chip in 1 million dollars to fund a scientific study to compare her diet with the Swank Diet, one that has been  found to help people with MS for decades. I, who was somehow too intimidated years ago to follow the Wahls Protocol, have now agreed to be part of this study, which is going to be a much more onerous and complicated option than simply buying her book and following along. How much more onerous and complicated? I’ll share the details in my next post. But strange as it is, a Lab Rat is a Lab Rat. I would rather experiment on my diet in a study as a contribution to the greater public knowledge than to simply tinker with the diet on my own.

How about you? Have you ever participated in a clincial trial? Would you?