Cheating in Chase Community Giving

Posted on May 25, 2011 by Jocelyn

This is Part I. Here are Part II, Part III, and Part IV. There’s a The End? post too.

One hundred and fifty of my friends have voted for the Whittemore Peterson Institute in the Chase Community Giving contest, and I really appreciate their help. Unfortunately, as of this morning, WPI has now been pushed down into ninth place. Two Hebrew academies came out of absolutely nowhere last night. Yesterday evening, the Sonia & Max Silverstein Academy jumped from fifth to fourth place, and this morning it’s in second. The Southern Connecticut Hebrew Academy also jumped ahead of us, into eighth place. It took many thousands of votes out of proportion of the previous voting patterns to make this happen.

The Sonia & Max Silverstein Academy’s “Big Idea” project is building a gym for their school. An ME/CFS friend and I were wondering at this – could a single school really be garnering more votes than our entire illness community? I started looking at the Silverstein Academy page. In the comments section, I found two comments referencing something interesting:

Arah White 4:46 pm
do we get our gold points already? Thank you. nice group
Message

Aviel Dahan 4:41 pm
damn i havent got my gold points in weeworld wth…
Message

Once I found those two, I decided I needed to read more of the comments section. As I continued to page through it, I realized that the comments they were receiving were very different than those on the other charitites’ pages. On most pages, people are talking about the charities’ work and their personal connection to it. On the Sonia & Max Silverstein Hebrew Academy page, many were just the single word “vote,” or some minor permutation of that.

This started me doing a few Google searches, and I found that there was suspected cheating in last year’s contest. (That story references gibberish names and comments, which I also found in my reading of comments, like Kgtgh Fkghssad, who commented “ftdre.”)

Things got progressively weirder and weirder, the more I read. I noticed a bunch of “stop bullying” comments on the Silverstein Academy page, but that page doesn’t say anything about bullying – their project, as I mentioned, is about building a gym.

Then I just happened to look at the Conejo Jewish Day School page (they’re in thirteenth place), and its “Big Idea” is about bullying…and a bunch of the same people have left the same terse comments both places.

That made me think that the single word “vote” comments must have been what someone was telling these people to do…to leave a comment on the wall so they get their gold points or whatever they’ve been promised.

I started clicking into some of the voters’ profiles, to see if they had a plausible connection to the academy they were voting for. I am doubtful that this person, who appears to live in Cairo, is legitimately voting for Conejo Jewish Day School without outside motivation. The main thing that caught my eye as I scanned her groups is that she’s in four or five groups that reference the game Barn Buddies. They’re practically the only English-language groups she’s in. Could her interest in voting have something to do with getting something for her game, like the gold points above? (When I ran her info page through Google Translate, I discovered that it included a bunch of Islamic religious pages, and several Palestinian pages. Yeah, pretty sure she’s not actually supporting CJDS. Also, what an unusual-looking baby!)

And then we found more incriminating comments:

Penny Williams Yarbrough11:39
Voted and even got paid to do it!!

Jeanie BrownMay 20
i voted all 5 but no swagbucks
Message

Sarah SwaggergirlMay 20
now… gimme meh creds
Message

This morning, I noticed a couple comments to the Sonia & Max Silverstein Academy page with the URL VoteFive.com, so I paid it a visit. The website suggests you vote for five Jewish schools and references “anti-bullying.” So that explained to me where the seemingly nonsensical comments about bullying on the Silverstein Academy page were coming from. And all of those schools have many of the single word “vote” or variations in their comment sections.

At that point, I decided to see if I could get more information out of one of the people I’d noticed had voted for at least three of the schools. But how to approach it so she’d tell me the truth? This is what I decided on:

Jocelyn W.
Hi there! Did you get free stuff for Bingo Blitz or something else for voting for that Hebrew academy? I hate to be left out of free stuff. Thanks!

Karen Elizabeth Turner
Free facebook credits for 21 questions

So there you have it. I haven’t been able to find exactly where the rubber meets the road in terms of getting these people their payoff for voting, but I conclude that they are being compensated in some way.

This makes me absolutely sick – sicker than I already am! So many people with ME/CFS, including the bedridden, like me, have been working so hard on this project this week, devoting large amounts of our precious and scant energy to trying to help WPI, which has linked our illness to the third known human retrovirus, XMRV. And we’ve been pushed from seventh down to ninth place by cheaters. Is donating a half-million dollars to one school so they can build a gym a better use of that money than searching for answers pertaining to a retrovirus carried by up to 7% of the population, a retrovirus that is undoubtedly in the blood supply and that has already sickened a million people? I don’t think so.

I’m sure Chase has some sort of algorithm running that shows them the pattern of when votes were cast. There’s surely something suspicious about these academies running up the rankings at the end like this.

Lastly, I looked up the rules, and the pertinent section reads, “Chase is not responsible for, nor is it required to count, in its sole and absolute discretion, late, lost, misdirected, unlawful or illicit votes…” But is this illicit? I don’t know. The rules say nothing about compensation for votes. Did I report all of those comments? Yes, I did. Will Chase take any notice at all of this cheating? I’m sorry to say that I don’t have high hopes that it will.

So at this point I wonder if the Sonia & Max Silverstein Academy, the Southern Connecticut Hebrew Academy/New Haven Hebrew Day School, Cheder Chabad Monsey, Conejo Jewish Day School, Lubavitch Cheder/Oholei Yosef Yitzchack Lubavitch, and The Lubavitch Academy/Hillel Academy may be cheating in the Chase Community Giving contest.

Edited to add: Chase emailed me back and said they are investigating, and that they take this sort of thing “very seriously.”

Posted in Chase Community GIving, Contests | Tagged , , , , , , | 82 Comments

My Weapons-Grade Insomnia

Posted on May 8, 2011 by Jocelyn

This is the first of a couple entries about my ongoing struggle with insomnia. Part II is here.

Bootsy Collins by day on the nightly battleground. (The irony of it is, my childhood bedrooms were all in primary colors.)

The insomnia is what’s going to eventually kill me.

I know you’ve probably heard someone say, “Nobody ever died of insomnia,” but I’m here to tell you that’s not true. Now, I don’t have that mutation, but I do have some serious problems with sleep. It’s nearly done me in twice already, at the end of 2007 and at the end of 2008. Every major crash I’ve had since the end of 2007 has been because of not sleeping.

Before I fell ill, I was a champion sleeper. While I never could sleep sitting up or take naps during the day, at night, I’d get in bed and be asleep in eight minutes. (I know this because Chimp, being a night owl, would come in and hang out until I fell asleep, then get up and work for another few hours.) As soon as I developed ME/CFS, I started having unrefreshing sleep, which is one of the hallmarks of the illness. I’d get in bed, sleep a whole night, and feel worse when I woke up than when I went to bed. But at least I was sleeping.

One day in November 2007, I got in bed, closed my eyes, and didn’t fall asleep, for no apparent reason. The next night, I thought for sure I’d sleep like a log, having not slept the night before, but again, I lay awake the entire night. The third night, I lay awake most of the night, but toward dawn, slept for a couple hours. And then the next three days went just like those three days. No sleep, no sleep, two hours.

It was as if my body had just completely forgotten how to sleep; like my body had forgotten even where sleep was. It was just wandering around the corridors, opening doors at random: “Is it in here? No. Is it in here?”

I was still working at this point – from home, lying down on the couch, with my computer on my lap – but the insomnia was seriously impacting my functioning. My short-term memory was absolutely shot within a week after it started, making writing challenging and working with spreadsheets extraordinarily difficult. We started trying over-the-counter things. Melatonin: nothing. Theanine: nothing.  Benadryl/Unisom/Tylenol PM (which are the same thing): tachycardia. By Christmas, having suffered six weeks of lack of sleep, I had gone from housebound to bedridden, was unable to sit up and was in terrible pain, the worst pain of my life. I called my job and told them I needed a couple weeks off to try to recover from the crash. I had always bounced back from them before – but this time was different. Two weeks later, feeling no better, I told them I was leaving.

At Christmas, it was obvious I needed to move on to prescription medication, but I had no doctor I could call on. My previous GP had skipped town (quite literally – she disappeared, taking all her patient files with her, and when I contacted the owner of the complex where she’d had her office, he told me that if I found her, he would appreciate me putting her in contact with him, because she owed him a sizable chunk of back rent), so I had to find a new one.

My new GP tried out several drugs on me, without much success. She decided that the best thing to do at that point would be to give me Klonopin. I may have suggested it because I know I’d read that Dr. Cheney used it in ME/CFS patients to great success. What I didn’t realize then is that he doesn’t use it as monotherapy, and I was forgetting something else important as well, which I’ll get to in a moment.

I started taking Klonopin in January 2008. It worked immediately to get me to sleep, but I had trouble staying asleep, so I took more Klonopin halfway through the night. I was quickly up to about 2 mg. A friend who is a psychologist told me I shouldn’t be taking it every day, and I ignored her warning. She wasn’t living with ME/CFS, I told myself. And Cheney, who was as expert as you get, recommended it.

But by February, it wasn’t working to get me to sleep any more. We added some trazodone, which helped. So we had a successful cocktail at that point. Then, at the beginning of March, I suddenly found myself gripped with terrible anxiety, and quickly recognized what was happening. Several years before, a doctor had given me a Xanax prescription to help me manage my needle phobia, and when I took it, I found myself terrified to leave the house. Once the Xanax was out of my system, the terror went away. The Klonopin, also being a benzodiazepine, was doing the same thing. At this point, though, I’d been on the Klonopin for six weeks, and I couldn’t just stop taking it as I had the Xanax. I started reading about benzodiazepine withdrawal, and realized I was in way over my head. I just wanted to be off the stuff – but at 2 mg, you can’t just stop taking the pills.

Two milligrams of Klonopin doesn’t sound like much, I know. It doesn’t look like much – just two tiny yellow tablets. But, I learned as I read about withdrawal, it’s the equivalent of 40 mg of Valium. I started an aggressive taper, and by the end of March, was down to 1 mg. Going that fast, though, meant that the lower I went, the worse the terror got.  I was in panic mode almost continuously, every day, and the stress of that threw me into a minor crash at the end of March. Trying to stabilize, I held at 1 mg for sixteen days, and in the process, realized I was going to have to go much more slowly if I was going to survive getting off the drug.

So we started a titration taper. This is a process in which you dissolve the pills in a fixed quantity of liquid and cut a minute fraction of your dosage each day. That way your dosage goes down much more smoothly, and you don’t have the stress that accompanies larger cuts. Getting from 1 mg down to nothing took from the middle of April until the end of August. In the middle of that, I was moved by charity air ambulance from California to my mother’s house in Indiana. The stress of that and the taper took me from bedridden to almost entirely unable to function at all. I hadn’t been able to hold a book; by August I couldn’t even really use the computer. I couldn’t speak above a whisper when I could talk at all. All I could do was lie in my bed in my darkened room and wait for the days and nights to pass.

On the day Obama was elected, the trazodone failed. Once again, I had no GP, as I’d been unable to leave the house since being moved. A doctor with some familiarity with ME/CFS, who was an hour away in Indianapolis, wrote me some prescriptions, but we couldn’t seem to come up with anything that would work. We went all the way up to Xyrem, which is the legal form of GHB, and is an absolute last-ditch sort of thing. And even that didn’t work. After not sleeping a full night for six weeks, I couldn’t roll over in bed, I couldn’t feel my legs, and I was having irregular heartbeat and attacks where my heart rate would suddenly zoom up to 120 bpm without warning. At this point, because of the heart problems, I landed in the hospital right around Christmas 2008. The Xyrem was not only not working to get me to sleep, but it, in combination with the lack of sleep, was causing paranoia and delusions. I heard nurses talking in the hallway outside my room, and I thought the things they were saying were veiled messages that were actually about me.

This was the darkest period in my life. There is a very good reason that sleep deprivation is used as a means of torture. It truly is. And no matter how little I slept, I couldn’t fall asleep. I was in indescribable agony. When I could speak, I begged Chimp to help me end my life, because there was no way I could do it myself, not being able to even walk across the room. I asked my mother to move the belts out of the closet by my bed, so as not to be continually tempted.

At some point in the weeks after I got out of the hospital, I picked up the old bottle of Soma that the doctor who’d put me on Klonopin had written for me back in California. Looking for pain relief, I took some, and found that it made me drowsy. So that night I took some – and I slept. That became my new solution, and it worked great – until I ran out after a month. Nobody would prescribe me more of it, even though I’d determined that it worked really well for me. (It apparently has enormous black-market value.) So we were back to square one.

At this point, having gotten a month or so of solid sleep under my belt from the Soma, I was doing a little bit better. I felt strong enough to leave the house briefly. We got me in to see a psychiatrist in town. She suggested Seroquel, which is an antipsychotic. I was a little bit apprehensive about it, because I knew it had a bit of a bad reputation, but I had no other options. Seroquel turned out to be a game-changer, and absolutely saved my life. After another good month of sleep I was able to walk, with some difficulty, from my bed at night to a sofa in the next room during the day.

In May 2009, we took me to see Cheney, and he added some additional medications to the cocktail to make it more robust and to hopefully keep it from breaking. And it worked for a good long time. I didn’t have a crash for all of 2009. At my 2010 appointment, I asked him what we would do if the combination of drugs stopped working for me. He said that that wouldn’t happen. I knew he was wrong, just because it’d happened before, but I wasn’t going to argue with him.

Then, toward the end of 2010, the drugs stopped working, I stopped sleeping, and had a crash on Christmas Eve 2010 and another at the end of January 2011. Those cost me the hard-fought ability to walk to the bathroom. I lost it in December 2007 and got it back in March 2010. But I’m hopeful I’ll be able to fight my way back to it again soon. And the thing that got me back to sleeping after those crashes? Soma is saving my life once more. Again this time, my local GP is not allowed to write it, but Dr. Cheney will. I’m really not sure what jollies people get out of it – it just sends me right off to sleep, blessed sleep.

I hope that the course of GcMAF I’m hoping to do this summer will end this problem. If it doesn’t, like I said, I’m pretty sure that insomnia will eventually end me. Eventually we’ll just run out of drugs that will work. I try not to think about it, honestly. I’ve been down this road varying distances several times, and I never want to go down it again.

I have more to tell you next time about what Cheney told me last month when I asked him why my insomnia is so bad, the supplements that have unexpectedly helped, and maybe, if I can manage to flip through all the records, a list of everything I’ve tried for insomnia.

Posted in ME/CFS | Tagged , , , | 25 Comments

How it Began – Part IV: The Crash and The Aftermath

Posted on April 24, 2011 by Jocelyn

This is the final entry in my ME/CFS “origin story.” Here are Part I, Part II, and Part III.

We arrived back in California on Thursday night. I had already planned to take Friday off to recuperate from the trip. Saturday, May 29th, I was feeling a bit tired, so I hung out on the couch with a book. It was Memorial Day weekend.

When the evening rolled around, I rummaged around in the kitchen, trying to find something to make for dinner. Since we’d been traveling, there wasn’t much in the house – although a friend once said that for a foodie like me, “nothing in the house” was everybody else’s “I just came from the grocery store.” I located some carrots, and I had a bag of split peas, so I decided on split pea soup, which I always used to cook with chipotle chilies and butter to replicate the smoky, fatty flavor that smoked ham would impart.

When I started chopping the carrots, I looked at the clock on the microwave. 5:45. I quartered the carrots and was working my way down their length when I was overcome with a bizarre sensation: All the energy in my body was draining out of me, from my head to my feet and from there into the floor. I dropped the knife onto the wooden cutting board with a clatter and grabbed the edge of the counter, suddenly too weak to stand. The weakness was absolute; it felt like I’d been hit by a wall of water and was being sucked away from shore.

I must be having a panic attack, I thought. I’d had them before, and there was no reason I should be having one at that minute, but I knew they could come with some really strange sensations. I think I’ll go sit down for a minute, I thought. It’ll pass. They always do.

I stumbled to the couch and called Chimp. He went out to the kitchen and finished putting the soup together while I waited to feel normal again. But something wasn’t right. Panic attacks don’t usually come with such a profound feeling of weakness. Nor do they usually feature tingling in the extremities. My arms and legs were deluged with a pins-and-needles sensation. And as the minutes ticked by, the “panic attack” wasn’t passing at all.

Sunday morning, I felt no better, and was considerably more distressed by whatever was going on. We went to the emergency room. Chimp parked the car while I walked up to the building. “You look really sick,” a man remarked to me as I struggled up the sidewalk to the door. I felt really sick.

In the ER, a doctor took my history. Because I was taking spironolactone, an anti-androgen drug (for acne) that is also a potassium-sparing diuretic, they checked me for hyperkalemia (excess potassium). My potassium level was fine, and the visit provided no real insight. The doctor who saw me thought I’d gotten a virus; he told me I’d feel better in a week or so. On my discharge slip, he wrote Consult your doctor if symptoms continue.

They did. The first week of June, I was unable to go to work. I had a constant fever. The tingling sensation remained in my hands and progressed up my legs over a few days, then slowly abated over another week. I thought maybe I had Guillain-Barré syndrome. I couldn’t stand without leaning on something. My sleep was unrefreshing – I felt worse when I woke up than when I went to bed. I was having labored breathing and felt like I couldn’t get enough air. My resting heart rate, normally below 60, shot up to between 80 and 100. I had a constant feeling of tightness running from the lymph nodes under my jaw down to my collarbone. Before the end of May, I’d been running 20 miles a week, and now I was totally unable to exercise – just looking at the treadmill told me to stay away from it. And my anxiety was much worse than usual – but that wouldn’t be hard to understand, would it?

Because I had never been sick, I had no regular doctor, only a gynecologist. I went to see her first. When my symptoms proved not to be related to her specialty, she had nothing to offer me. I made an appointment with an internist recommended by my boss’ s wife. At the appointment, she, too, was of no help. She suggested a prescription for an antidepressant. “But I’m not depressed,” I said. “how is that supposed to help?” She didn’t really respond.

October 2003. This was a pretty normal weight for me before I fell ill; I’m in the low 130s or so here.

By the end of June, my symptoms seemed to be stabilizing somewhat, and I was able to go back to work much of the time. By mid-July, I was making it through the workweek without taking time off. But weird things kept happening. I developed episodic vertigo, where the world would suddenly pitch and yaw crazily around me. I felt thirsty all the time for a while. And my weight, which had always been difficult for me to keep a handle on, had started dropping without me dieting or exercising.

I found myself a GP, and after some cursory blood tests, she started me making the rounds of specialists:

A sleep specialist who, at my appointment, spoke to Chimp about me as if I were not in the room, “Then, she will stay at the lab overnight…”

“What will I do?” I asked him pointedly. This seemed to set him back on track. The sleep study found nothing out of the ordinary – no apnea, no narcolepsy – although I had a far higher percentage of light sleep and a far lower percentage of deep sleep than normal, which I now know is characteristic of my illness, as is unrefreshing sleep.

August 2004. I’m down to about 118 here, three months after my first crash. I can see the illness on me, and in retrospect, that the muscle wasting in my shoulders is already present.

A cardiologist, who did a routine EKG, on which I saw the flattened t-waves I had read were characteristic of ME/CFS. At my echocardiogram, he proclaimed I had a “beautiful heart.” He administered a treadmill test, which I passed with flying colors, but after which it took hours for my heart rate to come down out of the 120s, and after which I was flattened for days. (I had no idea what was going on at the time, but this post-exertional malaise, I was to learn, is the hallmark of ME/CFS.) I called his office; he had no insight into either of those things.

A brilliant and kind endocrinologist, the best of the doctors I saw early in my illness, who conjectured I might have subacute thyroiditis or Addison’s disease. He ran a battery of tests and, at my follow-up appointment, told me sadly that he could find “no endocrinological explanation” for my illness. He told me he thought I had gotten a really bad virus, something on the level of mononucleosis. In a move that none of us realized the foreshadowing nature of, he said he would like to send me to an infectious disease specialist. But the one he wanted me to see dealt exclusively with AIDS patients, he said, and he didn’t want to send me to either of the other two in town.

A rheumatologist with poor English skills who took a better history than most doctors did, but then offered me as next steps a chest x-ray and a battery of blood tests. When he pushed the list of tests across the desk to us, Chimp’s look to me spoke volumes. Chimp had had rheumatoid arthritis for twenty years already at that point, and he recognized the tests as arthritis markers.

Through all of this, I was a bit frightened, but at the start, there was never any doubt in my mind that whatever it was, we’d uncover the cause, treat it, and things would go back to normal. As the weeks ticked by, and turned into months, and I racked up negative result after negative result, I started reading about CFS (it was not referred to as ME/CFS in the States at this point). And as I did so, I realized this might go on for a while. I read that if I was to get better, I would do so by the five-year mark; after that, people generally had it for life. Early on in my reading about CFS, I also encountered Laura Hillenbrand’s essay, “A Sudden Illness.” While frightening, I comforted myself with the thought that my illness was not as severe as hers. I would have been more frightened if I’d known that one day it would be just as bad, if not worse than what she describes.

By December, my GP had done all the tests she could think of, including for levels of iron, folic acid, and B12, mononucleosis, Epstein-Barr virus, San Joaquin Valley fever, Lyme disease, and Rocky Mountain spotted fever. She didn’t think I had lupus, MS, or fibromyalgia. She sent me for an MRI; they found a brain in there, but no lesions.

She’d said months earlier that she didn’t want to give me the CFS label as long as there were things left to test for. At this point, there was nothing left to test; by exclusion, I had CFS. I was functioning okay, though – I missed exercising and cooking (the latter of which I’d mostly had to delegate to Chimp), and I’d lost about a dozen pounds, but I was managing to get through the workweek, though I did little but rest on the weekends. I didn’t love my changed life, but I was dealing with it.

A year in, I met with my GP again. She had told me the previous year that she had an aunt who’d wrested with CFS before returning to health after two years. At that one-year appointment, I said to her, “I don’t mind if it takes two years to get better, because…” and she completed my thought, “Because you’re halfway there!” Little did I know that I was going to be a lifer.

Unfortunately, the one really important thing nobody told me – because I didn’t have an ME/CFS-knowledgeable doctor, and I didn’t know how to find one back then, or that I needed one – was never to push it, energy-wise, if I wanted to have the best chance at getting better. But that is another story.

And it’s not what made me sick, but the association was just too much to bear: After that May day, it wasn’t until 2011 that I could bear to eat split pea soup again.

Posted in ME/CFS | Tagged , , , , , | 27 Comments

The Post-Appointment Post

Posted on April 16, 2011 by Jocelyn

Chimp, Mom, and me. If they ever make a 50s monster movie about my life, itll be titled _I Married a Metal Roadie_. And yes, our street is at a 30-degree angle. Welcome to Western Pennsylvania.

The information contained in this post is my interpretation of Dr. Cheney’s recommendations for me. This is not medical advice. Please don’t change your treatment plan based on anything in this post.

The previous two times we’ve done the drive down to Asheville, we did it in two days – four hours each day. It seemed silly to stop after four hours, so this time we did it in one. That was a mistake. I was overly optimistic about my ability to handle it. I was flattened when we got down there, and it meant I was too tired to speak during the appointment. I had typed up my symptoms and questions ahead of time, so I only spoke a few words, but that day was really trying, and I hated that I couldn’t talk. It reminded me of the most of a year I could barely speak in 2008-9. Not something I wanted to be reminded of.

Dr. Cheney starts the appointment with a exam that includes some important physical markers for the illness. (You can find a note about them on this page of his website.) As he does so, he gives his evaluations to his assistant. They include a look at your eyes for corona radii, the back of your throat for a “crimson crescent,” your teeth for number of amalgam fillings and any tattooing of them, your fingers for clubbing and fingerprint changes, seated and standing blood pressure, a breath hold to see if you desaturate, and finally a Romberg test, where you stand and then close your eyes to see if you fall.

Unfortunately, on most of them, I remembered my findings and was dispirited to find I was worse than last year. The most dramatic was the Romberg test, where you stand with your feet together, arms out in front of you, and close your eyes. Last year, I wobbled a bit after I had had my eyes closed for a few seconds, but this year, as soon as I closed them, I started to fall. So was this a matter of really being worse, or being worse because I felt worse than usual that day? I’m not sure.

Next, we all sat down (well, I lay down, with sofa cushions we’d brought between me and the exam table) and Dr. Cheney took a look at the symptom list I’d brought. Last year I blanked when he asked me what my symptoms were. I named off a few major ones, but I have so many that I sort of forget about them. They become just the way life is, and I forget that they’re not at all normal.

After he read off a few of them, he said, “All of these can be exacerbated by magnesium deficiency. And that has nothing to do with dietary insufficiency,” and launched into an explanation of how they all hung together that I only barely followed out of exhaustion. We’d already established that both magnesium supplements and intramuscular magnesium injections gave me tachycardia. So he suggested that perhaps I was intolerant of magnesium sulfate or a preservative in the injection, and that I should try another form of magnesium, like magnesium chloride.

Next, he addressed my negative XMRV test, which, as we expected, he said he believed was a false negative. He also explained that, paradoxically, the sickest patients in the practice (like me) are most often negative at first. This retrovirus, unlike HIV, has very low copy numbers in peripheral blood. Instead, it’s hanging out in reservoirs, like macrophages. As people undergo treatment with GcMAF, he said, they go from testing negative to testing positive. He gave us the option to test again, but said as it’s a $550 test and there are other ways to get to an understanding of whether XMRV is present, we don’t need to do that again unless we want to.

The other method of determining whether XMRV is present is testing for IL-8 and nagalase, he told us. These two tests in conjunction, with positive results, would qualify me for GcMAF, even in the absence of a positive XMRV test. My IL-8 test was already at the lab and was a week away from being returned when we were at the appointment. We have not had the nagalase test done yet, but hope to within the next week. Now, remember, as I relate this next part, that XMRV is hanging out in the macrophages, and that GcMAF stands for Gc macrophage activating factor.

Gc protein is found in the serum portion of the blood. When converted to its active form by B and T cells, it becomes Gc macrophage activating factor, the body’s own supply of GcMAF. Its function is precisely its name: activating macrophages so they can fight infection. But in the presence of XMRV, our natural supply of GcMAF is negated by Nagalase, which blocks the body’s conversion of Gc protein to GcMAF. That means the macrophages are turned off from attacking XMRV as they should, and the retrovirus has the upper hand.

With no trace of pride, he said that he was the first person to be testing for nagalase in ME/CFS patients. (It’s really helpful to have a genius doctor.) A normal result on the nagalase test would be a value of zero to 1.0. Thus far in the practice, the results have ranged from 1.1 to 6.5.

He explained that he’d found that nagalase level predicts response or non-response to the standard GcMAF protocol . People below 4 respond; those above 4 do not. This can be gotten around, he told us, by doubling the dosage of GcMAF, and, interestingly, by increasing the body’s supply of vitamin D through sun exposure or a tanning bed (GcMAF is also called Vitamin-D binding protein).

The GcMAF protocol begins with 1/5 of a normal dose under the tongue. You then do the same five days out, and five days after that. This is because it will cause Immune Reconstitution Response Syndrome. As your immune system begins to recover, it overreacts to the pathogens it find running amok, and sort of freaks out. This, Dr. Cheney said, would lead to me feeling worse, probably very much in the ways I’ve already experienced. But, he said, everyone on GcMAF has gotten through it intact, which I found reassuring. And this is why you don’t start with a full dose of GcMAF – because if you do, the IRIS will be even worse when it comes on.

So, once IRIS is past, the GcMAF dose is increased stepwise, until you are taking a full dose every five days. The first round of treatment will be eighteen weeks, and once that is finished, we will do another round of blood tests to determine if I will stay on a maintenance dose or if I can simply stop.

Five of the seven people currently at twelve weeks of treatment with GcMAF or more, he told us, were responders. Three of those five had had a very dramatic positive response. And as time went on, he said, he was finding more and more ways of bringing non-responders into the responder group.

After all this, we repaired to the echocardiogram room. The technician, Michael, took a bunch of measurements with the wand with me on my side, and then I was allowed to shift onto my back for the echo terrain map testing (item five on this page). This consists of Dr. Cheney placing drops of gel on my skin and having me rub them in, or placing bits of supplements under my tongue and in both cases, seeing how my heart responds. (The first year we did this, having rubbed half a dozen things into my left arm in succession, I joked, “This is the worst spa treatment I’ve ever had.”) In contrast to the physical exam, where it seemed like I was mostly doing worse, on the ETM, I did uniformly better. But this is where the day’s weirdest event came in.

Dr. Cheney had a new gel, Mesenchymal Trophic Factors, to try on me. I rubbed the gel in, and within a few seconds had an instantaneous full-body reaction. I rapidly felt hot all over from the inside, my heart rate zoomed up to 130 (which made the heartbeat sound from the echo very disconcerting – Michael noticed that and turned it off), and I had an overwhelming feeling of doom. My mom and Chimp ran to get me wet paper towels, and it took me quite a few minutes to calm down again.

Dr. Cheney was his usual calm self through the whole thing. He reached for the magnesium spray, which can act as a brake on certain reactions (though he didn’t give me any), and reminded me that the effects of the gel would naturally degrade in a few minutes, just like the ones I use every day. And he started his usual thinking aloud as to why this all was happening.

His hypothesis was that I was so “exquisitely compensated” that anything that moved me dramatically from my equilibrium – even in a positive direction – might upset my system. He likened it to tipping a rowboat from side to side and it bouncing back and forth. I certainly felt like I was taking on water.

And, he conjectured, after that, I noticed that movement somehow and promptly had an adrenergic reaction. I, personally, felt like I was already having it before I noticed it, but who knows?

Anyway, he told me I was the first person to have such a reaction, and that the MTF he’d put on me was far stronger than what would eventually be used by patients. And of course, he said, I could always tune the strength of the gel by where I applied it on my body. (You can apply the gels anywhere from your neck (strongest) to your foot (weakest).) And at that point I told him, “When I start it, I think I’ll apply it on the floor next to my foot, and work up to putting it on my toenail.” I think that may have even gotten a smile out of him.

And even with all that happening, Michael did manage to get his measurements – I sure didn’t make it easy – and the MTF tested as positive for me – almost 10%. That was stronger than anything else tested on me that day. The only thing that came even close was Iceland Spring water…which I think I prefer for it not upsetting my system like that. (Of course I’ll start the gel when it’s available. On my toenail.)

And when I got home, that first night I put the magnesium spray next to my pillow. Each time I awoke, I dosed myself with a few sprays – and I made it through the night without using any of my backup pills, for the first time in many weeks.

It really is helpful to have a genius doctor.

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None Detected

Posted on April 8, 2011 by Jocelyn

Just heard Chimp gasp in the other room while opening the mail. My XMRV results are back.

I came back “none detected” for culture and for serum antibodies.

I’m pretty disappointed, although I know, of course, that this doesn’t mean I don’t have a gammaretrovirus. Cheney has said about 10% of his patients are coming back negative, at least to start. It also may be, simply, that I have the P variant and not the X variant, which this test wouldn’t find.

So I won’t know exactly what the next steps will be until I see him on Monday, but there will definitely be a retest in the works. I may have to retest under an “immune challenge,” like going off artesunate for a while longer than I did for this first test, or deliberately getting a cold. (The other immune challenge is getting a flu shot – which, no. He’d never ask me to to that. He’s counseled me not to have another one, ever.)

Additionally, the chemokine IL-8 is another way of telling whether there’s an active infection. So I’ll have that test, and that will be another part of the puzzle that would allow me to get on GcMAF even if I come back negative for XMRV again.

I am disappointed, as I said, and a bit frightened, honestly. I feel like I’m in a race against time. My sleep cocktail keeps coming apart and I’m afraid I don’t have much time left before it breaks altogether. Neither my GP nor Cheney have any new drug ideas for me to try for sleep. The reason I moved up my annual appointment with Cheney from late May to this Monday was hoping to get on GcMAF as fast as possible because of the sleep problems. And now this.

So there will be a retest. And we will know more on Monday.

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How it Began – Part III: Chicago Once Again

Posted on April 4, 2011 by Jocelyn

Chicago Field Museum by KiwiDeaPi

This is the third entry in my ME/CFS “origin story.” Here are Part I, Part II, and Part IV.

Seven months into my marketing job at the California Tree Fruit Agreement, I was headed to Chicago for the second time in two months.

I had been hired the previous fall for my experience in category management and natural foods retail. And the CTFA role was truly my dream job – working on a favorite agricultural product (peaches, plums, and nectarines) with an almost entirely family-owned grower base. Because the organization was so small – under 20 people – I had the opportunity to do everything from writing, to analysis, to project management, to overseeing research, to meeting regularly with growers, to teaching the basics of category management.

It was the last of those tasks I was on deck for in Chicago. I was to arrive a couple days early, planning to finalize the presentation I was going to give the reps as well as finish assembling the retailer data I was going to hand over to them for their use. After the meetings were over, Chimp was to meet me there so we could spend a couple days in the city together. When I went to go up to my room after checking in, I realized I was feeling rather dizzy as the elevator ascended. That’s odd, I thought to myself, I was dizzy the last time I was here too.

I sequestered myself in my room and spent a couple of long days at the desk, ordering room service and takeout, and only going out to hit the hotel gym. One of those times, I got into one of those little competitions that sometimes happen on proximate equipment…the guy next to me and I upping our speed in tandem. It wasn’t really fair – he had probably eight inches on me – and I found myself flagging as the timer ticked up. It was to be my last normal workout.

The presentation went off without a hitch. I got some great questions and was roundly good-jobbed. We finished our meetings. Chimp arrived. Our first free morning, we were planning to go to the Field Museum. We both have a special fondness for museums, having grown up within reach of the Smithsonian. That morning, I took a shower, but when I got out, I felt utterly compelled to lay down on the bed, exhausted. I’d been working a lot, and I was fighting a cold, but this didn’t seem right. After an hour and a half, I got up, put my makeup on, and out we went on the El. We spent a couple hours checking out the museum.

We were in the gift shop when it happened – a sudden, furious blast of vertigo. The world pitched and yawed violently around me, ceiling rapidly and continuously exchanging place with floor. I grabbed the arm of a chair to keep from falling. This really was weird. Because I was feeling too weak and dizzy to continue walking around, we went to the street and got a cab back – unlike me when there was the possibility of a walk on a beautiful spring day and mass transit to take advantage of.

At dinnertime, still exhausted, I said, “Why don’t we just order in? I’m too tired to go out.” Chimp says that’s when he knew something was really wrong. A whole city full of phenomenal restaurants, and his foodie wife didn’t care what was for dinner, as long as she didn’t have to go out. We never ordered in. But we did, and I fell into bed.

The next day I found myself again exhausted in the morning, but we managed a little bit of shopping in the afternoon. That evening, we managed to head out for dinner. Sitting in the restaurant after ordering, I said to Chimp, “I have this feeling that something awful is going to happen.” While he didn’t pooh-pooh my concern, he tried to be reassuring. I had to admit he was right – I didn’t know something awful was about to happen, but I had an ominous sense of foreboding, the origin of which I couldn’t discern. We were to fly out the next morning.

On the first leg, from Midway to Phoenix, Chimp and I were in the very back of the plane. I had never been a great flyer – I was an okay one, but I always tried to get seated near the front. I didn’t like the claustrophobic feeling of all those people in front of me. Approaching the Rockies, we hit a few bumps and the fasten seat belt sign came on. Crap, I thought, looking up at the illuminated symbol, I hate rough air. Crossing the Rockies had always been my bugbear. Moments later, the bumps turned into lumps, and then into mild jolts. The captain ordered the flight attendants into their seats. That’s never good news, I thought.

The jolts got stronger, and stronger still, and the plane got very, very quiet. I couldn’t bear to be jostled around sitting up, so I pulled my tray table down and hung onto it. We took a few big dives that felt uncontrolled, which made people scream. The captain came on and said he was going to try to get to some smoother air several thousand feet down, and he headed there in a hurry. I’d never felt such a sharp descent in flight. Diving while jolting, the turbulence didn’t improve at all. I was in a blind panic at this point.

The captain came on again, and told us that we would reach smoother air in eleven minutes. Eleven minutes? I thought to myself. I can’t possibly endure this for another eleven minutes. But what other option did I have? I stared at my watch’s second hand. One minute. Two minutes. Three minutes…

Sure enough, at ten minutes and thirty seconds, the turbulence ceased as quickly as it had begun. But my anxiety was still at a fever pitch. I said to Chimp, “I don’t want to get on another plane at this point. Let’s just get a car in Phoenix and drive it.”

“It’d be a two-day drive, Joc. It’s only a couple more hours flying.”

I sat and stewed in my soup of adrenaline. Why was I so crazy anxious? This wasn’t like me. I had the occasional panic attack, but this was different somehow. Chimp, too, was confused. He expected that the smoother air would bring smoother sailing for me. But I just couldn’t seem to calm down, and the anxiety had left me feeling completely drained.

Somehow, Chimp got me on the second leg of the trip, and by Thursday evening we were back to our place in California. I left my suitcase for another day and dropped into bed.

Go to Part IV.

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How It Began – Part II: Chicago

Posted on March 20, 2011 by Jocelyn

Chicago Skyline at Night – HDR by Michael Tuuk

This is the second entry in my ME/CFS “origin story.” Here are Part I, Part III, and Part IV.

The rest of the winter of 2003-4 passed uneventfully. Come spring, I was in Chicago for the Food Marketing Institute trade show for work at the end of April. My mom came up to Chicago from Indiana to have a visit with me.

She and I went out to dinner at a middling Indian place, recommended by the concierge at the hotel, a tall, beefy man with an insincere smile. The restaurant didn’t have much to recommend it, and I wished I’d sought out a better place on my own. My entrée wasn’t as hot as it should have been; the relishes weren’t as good as they should have been. The papadums were overly greasy and undercooked. No matter; it was just nice to have dinner with my mom.

After dinner, we took a walk up and down Michigan Avenue. We got to one end of the main shopping strip, crossed the street, and came back the other way. I started to feel like my feet weren’t landing where they should, as if I were stepping in sand. We were walking across a bridge that had grating underfoot. I was trying to keep my eyes forward as seeing open space beneath my feet gives me furious vertigo.

A fast-talking “homeless” guy approached us with copies of The Onion. I normally know better than this, having lived in NYC, but he had a good spiel and I decided to give him a couple bucks. Long story short, because it’s still embarrassing to me to admit I got taken this way, but he talked me into him giving me change from a $20, and of course, I didn’t get the change he promised me and he was gone in a flash. I was chagrined. I felt incredibly stupid. I had seen scams like this when I was 18 and had always been wise to them – what was I doing falling for it when I was 28? We made our way back to the hotel. We had planned to go back out, but when we got into the room, I told my mom I felt wobbly on my feet and I was going to get ready for bed. I put the copy of The Onion in my empty suitcase in the closet, where I wouldn’t have to look at it and be reminded of my embarrassment. I closed the suitcase and the closet. I tried not to look at myself in its mirrored doors as I did so.

I got ready for bed. About an hour later, I was suddenly gripped with terrible shivering, so bad I could barely speak, and an overwhelming feeling of panic. I called Chimp, scared out of my wits for some reason, all out of proportion to the shivering. I knew, somehow, that something was seriously wrong. The violent shivering went on continuously for an hour. After an hour, we walked to the Northwestern hospital across the street. It was raining lightly. The cool air felt good. A nurse took my temperature and blood pressure and found nothing out of the ordinary. We went back to the hotel.

We got in bed. My mom fell asleep. I listened to her breathe and tried to sleep. I was too wound up from the fright of the dizziness and shaking. Eventually I passed out. I woke a couple hours later, soaking wet with sweat. I got up to change my pajamas and discovered I was having gastrointestinal upset. It was bad. I thought I had food poisoning from the lukewarm entrée. I stayed in the bathroom, miserable, for a couple hours, changed out of my sweaty pajamas, and got back into bed, where I finally slept for the rest of the night.

The next morning I went to a seminar at our data provider I’d been previously signed up for, though I dearly wanted to skip it. I felt weak that day, and for about half of the day after that. Then I felt better. I walked the show with a former professor of mine, feeling a little tired but not bad. He gave out before I did, though I was relieved when he did, because I needed to rest too. That day and a half was a normal recovery time from something like that for a healthy person. Everything seemed to go back to normal. I had just gotten food poisoning. I meant to tell the smirking concierge but never remembered to do so.

But over the next month, things started to fall apart in small ways. I didn’t realize it was happening, and looking back at my recipe weblog, you wouldn’t be able to guess. I was cranking out entries and entrées at a furious rate. I was working a lot getting data and new publications ready for the stone fruit season. I had more travel coming up at the end of the month – back to Chicago for a meeting with our reps – and one day in the week before that I said to our receptionist that I felt crapalicious. I was coming down with a cold. That week I ate something I shouldn’t have – something I had left in the fridge one day too long, maybe – and maybe I gave myself food poisoning again. That’s what it seemed like, because Chimp ate it at the same time and the same thing happened.

And then I had to go to Chicago again. The night before we left, I was trying to pack my suitcase at 11 p.m. and I was much more exhausted than I should have been at 11 p.m. I was sitting on the floor by my dresser, pulling pajamas out to take with me. I leaned against the dresser. I had been working a lot, but I could hardly pick myself up off the floor. I just thought it was the cold I seemed to be getting. It was a feeling that was about to become very, very familiar.

I know that copy of The Onion was not a smallpox blanket; I know the guy carrying it was just a small-time hustler, not a disease vector. I don’t know exactly why I shivered that night, whether it was food poisoning or something else. My mother brought it up a year on; we hadn’t talked about it since that night.

“That situation…the guy on the street…it was just evil,” she said.

All I could say was “Yeah…you’re right.”

Go to Part III.

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How it Began – Part I: The Flu Shot

Posted on March 19, 2011 by Jocelyn

File:Yellow-Fronted Canary.jpg

This is the first entry in my ME/CFS “origin story.” Here are Part II,  Part III, and Part IV.

You say you want to spend the winter in Firenze
You’re so afraid to catch a dose of influenza
You live your life like a canary in a coalmine
You get so dizzy even walking in a straight line
– “Canary in a Coalmine” – the Police

I had never had a flu shot.

I have had needle phobia as long as I can remember, and that had always kept me from getting the influenza jab.

But the winter of 2002-3, while we were living in Michigan, I got a terrible case of the flu. I was abjectly miserable for at least a week, and my fever got as high as 102.5. So going into the next winter, when we were living in California, I decided I wanted to get a flu shot and head that possibility off at the pass.

And so that is how, on December 8, 2003, I came to be standing in the hallway of my office at the California Tree Fruit Agreement in Reedley with my co-workers, waiting to be jabbed in the arm. I remember telling myself, “It’s just a shot; it’ll only hurt for a moment,” and chatting with those around me about kids and adults with needle phobia. I hadn’t been feeling so great that morning – I felt a little bit like I was getting sick – but by the time the afternoon rolled around, I was feeling a bit better and decided to go ahead with the shot. After all, if I didn’t, I was going to have to pay out of pocket instead of getting it for free, and I would have to get my nerve up all over again.

When my turn came, I sat down in the chair in the conference room, the nurse swabbed my arm and gave me the shot. It stung a little, but not much, really. Proud of myself, I walked back to my desk and reached for the phone to call Chimp to tell him I’d successfully made it through.

Before I could pick up the phone, my left hand started going numb, then a moment later, my right. In a flash, my arms were numb to the elbows, and the sensation was quickly rising. I grabbed my water bottle off my desk and started walking back to the conference room. As I walked, the numbness began ascending in my legs. By the time I got back to where the nurse was, I was quite disoriented.

“I’m not feeling good,” I said to her.

“What’s going on?”

I couldn’t find the words. What was going on? I hardly understood her question. The numbness was in most of my body now, and my vision was starting to tunnel. There was both a ringing and a roaring in my ears. Fighting the confusion, I somehow choked out, “I feel faint.”

“Get down,” the nurse ordered, and jumped up to get me on the floor.

Once I was on the floor, the faint stopped progressing. I lay there for a bit as she finished giving shots to the rest of my co-workers. Somebody went to the break room and brought the cushions from the couch in for me to lie on. After half an hour or so, feeling a bit more normal, I sat up, but as soon as I did, the whole thing started all over again. This happened a couple times, and the nurse said, “Your blood pressure is too low. I want you to drink that entire bottle of water. If you were in the hospital, I’d be hooking you up to a saline drip.”

Wanting to avoid the hospital, I applied myself to drinking. After a couple hours, I started to feel a little bit more normal. The numbness had gone away, at least, but when I was finally able to get up, I was dizzy and felt strangely exhausted. I struggled to get myself to the bathroom and to pack my stuff up to go home. A co-worker volunteered to follow me home in her car to make sure I got there okay. I dragged myself to the car and drove home.

The next morning, we had a grower breakfast, which meant I had to drive down to a restaurant south of Reedley to have a morning meeting with a group of our members. I felt terrible, but I was only just over a month into my job, and I didn’t feel like I could call out sick. I pulled into the parking lot full of pickup trucks and walked into the restaurant. When I found our group and walked up to the table, my co-worker Dale’s jaw literally dropped. Later in the day, he said, “Boy, you looked just awful when you arrived at the breakfast this morning.”

“Thanks,” I said. I knew he meant it sympathetically.

For the next three days, I was exhausted, dizzy, woozy, and I felt like I actually did have the flu, body aches and all. I was really tired for another couple weeks – in a way that was later to become very familiar – before I really started feeling like myself again.

My co-worker Dovey told me that she, too, had had a vasovagal reaction to a shot before. She’d climbed into her car to leave the doctor’s office, and before she could start the car, she woke up some time later with her head resting on the steering wheel. I found out that it wasn’t uncommon in young women, but nobody knew why it happens. I decided that was probably my last flu shot. I chalked up my reaction to the shot to my then already long-known tendency toward weird and prominent side effects to everything from caffeine (extreme jitters and irritability) to cold medicine (non-drowsy types: awake for days; other types: asleep for days) to Xanax (anxiety).

At the end of that month, between Christmas and New Year’s, we went back out to the East Coast to visit friends and family. Chimp’s mom had the flu when we arrived in Maryland, but no matter. We came right in, I cooked some dinner and sprayed Lysol on switches, doorknobs, and other touch points, and we had a fine time with them. When we got back to California, I had a sore throat. No matter, I thought; the climate where we lived was quite dry, and I often had a sore throat seemingly because of it. I pulled out the humidifier and set it up. The next morning, after sleeping for 12 hours, my throat was still sore, and I felt really tired. No matter; I thought – I must have slept too much. Then I had a bit of a temperature and the next day my throat was still sore. At that point, I thought maybe I had strep. We went to an urgent care place on a Sunday night.

Now, if you were a comedy writer and you knew the events I’ve already described here, what would you have me get sick with at this point? Scabies? Eczema? Chicken pox?

Influenza?

That’s right. When the jocular doctor came in to see me, he asked about my symptoms, took a throat swab, and then said, “Let’s culture this, but I’ll tell you now that you have some signs of the flu.”

“But I had the flu shot,” I said.

“Well, it doesn’t cover every strain,” he said, which I already knew – and then he said, “It didn’t cover the one we’ve been seeing most often this winter and another one is emerging now.”

There’s no justice in the world, I said to him; I not only got a vasovagal response to the immunization, but I got side effects for three days afterward, and now I get the flu anyway. When he came back, he said, “No strep – looks like you have the flu!”

Then he turned to Chimp and said with a chuckle, “Watch out – she’s contagious!”

He gave me a Tamiflu script, which I went home and took with dinner – and which promptly made me extremely queasy. I looked at the prescribing information. Upset stomach: 9.9%. Another side effect. Well, I was nothing if not consistent.

Go to Part II.

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The Mystery, Solved

Posted on March 14, 2011 by Jocelyn

I really apologize for not writing. I’ve been dealing with some major muscle weakness that’s made it enormously challenging to type at all. Many days lately, I haven’t even been able to manage short comments to introduce links on facebook.

And it’s not even the illness this time. Remember that fever and sore throat I was having? It kept going on, not getting better or worse, which gave me a hunch. I looked up the side effects for Soma, the muscle relaxant I’d had to add to the sleep cocktail when it had gone pear-shaped once again, and there it was: fever and sore throat. I stopped it (this process was no fun, because I’d been on it a few weeks – Soma has a discontinuation syndrome of pain and anxiety) and swapped it out for a different muscle relaxant, Norflex, and after a couple days, the sore throat and fever went away. I then quickly determined that the Norflex made me anxious and antsy – great fun when you’re trying to go to sleep, let me tell you – but it was working. Then two days ago, I realized I was having fever and sore throat again. Back to the side effects list: Yep, Norflex apparently causes the same thing in me.

Chimp looked up both drugs, and seeing that they seemed to have different mechanisms of action, had a good idea, which we’re going to try. He noted that when I made the switch, the symptoms went away for several days, then reemerged. It took about five days for each of those two drugs to cause the fever and sore throat, I think, going by my notes in the medication/sleep spreadsheet I keep. So what we’re going to do is try using each one for several days, then switch to the other. Hopefully that’ll allow them to work and not build up in my system to the point that I am feverish and uncomfortable, and also not cause me to have withdrawal effects from the Soma.

The problem with both of these drugs, besides what I’ve already noted here, is that they are both muscle relaxants, like the Baclofen I’m also on for sleep, and relaxed muscles effectively means muscle weakness, and that means the inability to type. But, I’m sorry to say to my readership, sleep is more important than writing blog entries. (For those of you who don’t know, the reason I don’t take the usual sleep aids, like Ambien or Lunesta, is that they, like the benzodiazepines, give me screaming anxiety. Yes, Xanax actually gives me panic attacks. No, it’s no fun to live in bizarro biochemistry world.)

We’re going to try a few other things, too, which I’ll relate if they pan out. This all reminds me once again that I’m living on borrowed time with this insomnia problem.

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The Pills Not Taken

Posted on March 2, 2011 by Jocelyn

Photo by Laura Molnar. Isn't this exactly what you picture when you read the poem?

If you’re not familiar with the Robert Frost poem, here you go.

One of the things that keeps me up at night (who am I kidding; everything keeps me up at night, from sugar to licorice to antifungal cream) is worrying about my treatment plan.
As you might expect for an illness that has long had no known etiology, there are a great many treatment approaches. You can take a laundry list of supplements, prescriptions, and custom gels from Cheney, to different laundry lists of supplements and prescriptions from many others, to years-long courses of prescription antiviral medications from Lerner. Nobody has a cure yet, and how do you know what’ll benefit you most? We picked Cheney because he was within geographic reach and of stellar reputation, but I still worry about whether I’m on the best possible treatment for me.

Of the choices listed above, it’s that last set – the antiviral prescription medications – that are usually the source of my worry. While a Plain Old Virus is not likely the cause of the illness, there are a number of viruses that are known to be reactivated in people with it. And thus, some people do better with antiviral therapy. Cheney has me on a few supplements – artesunate, wormwood, and inosine – that have antiviral effects. But I worry that maybe I should be using the big guns. I know a ME/CFS blogger who’s doing better on antivirals – and I wonder whether I would be doing better on them too.

Secondly, Cheney, at this point, will not prescribe antiretrovirals. He believes that they’re dangerous for people as sick as his patients, and that long-term treatment with them will be problematic for us. But again, I know one ME/CFS blogger who’s doing markedly better on them, seems to be tolerating them fine, and claims that before treatment she was a KPS 40. I’m a KPS 40. She’s now flying back and forth across the country as the new director of clinical services for the WPI. I, you might have noticed, am not flying anywhere.

I also worry that as time goes on, the damage the disease is wreaking will be more and more intractable, and the benefit I could get from treatment will be less and less. But I keep trying to reassure myself (and Chimp does too) that there are a lot of irons in the fire, and there’s one particular great hope on the horizon: GcMAF.

Kenny de Merlier is using it with his ME/CFS patients in Belgium, and apparently having very good results, with almost all patients responding positively. There are some hoops to jump to get me on it. We will have to pay for the phlebotomists to come out and do blood draws repeatedly. The pre-tests will require fourteen tubes, which is challenging, because I can only get three or four out before I start to get shaky and faint. There will be routine blood tests once a month while I’m on it, and a repeat of the pre-tests at the end of 24 weeks. Before I can start it, though, I have to go to Asheville for a baseline appointment with Cheney, which, as you can probably imagine, is pretty taxing and several thousand dollars to boot, with little of it covered by insurance. Then we will order the GcMAF from Belgium, and a 24-week supply, which is the first course of treatment, will cost about $3,000. Then at the end of the 24 weeks, I will have to go to Asheville to see Dr. Cheney again for a follow-up visit. You probably see now where all my disability income – and more – is going.

But great things seem to be happening in Belgium, and this certainly seems like something that could help. It won’t cure me, but it might give me better function. And to go from bedridden to merely housebound would be a dream come true – it’s something I never thought would happen for me.

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