I’ve been away from the blog because of my annual appointment with Dr. Cheney on March 20th. First I was trying to rest up to get ready for it, then I was trying to recover from it. This was the fourth year I’ve gone to see him, and we’ve pretty well got the trip down to a routine now. We left on Sunday, did the drive to Charleston that day, then the second half through to Asheville on Monday, to make it as easy as possible for me. My appointment was on Tuesday, and we drove home on Wednesday.
Unfortunately, my body picked the week before the trip to develop only my second cold in the course of my nearly eight-year illness. The last one was in 2005. Chimp had had it first, and we’d been not kissing each other for a couple weeks, until he seemed to be on the mend but just carrying around a lingering dry cough. At that point we decided he probably wasn’t contagious. Well, wrong. A week before we left, my throat started to hurt. And not only did I get a cold, in the process, the cold somehow found a way to kick back up that cytokine storm that I had spent five months trying to get rid of, bringing back everybody’s favorite: The feverish feeling. So I was already feeling extra crappy before we even got going.
This trip is always hard, and I always seem to forget how hard it is. I suppose this is a good thing, that I forget about it after I recover from the exertion, but it’s not terribly fun to be surprised anew at how awful I feel while the whole thing is going on.
One of the things I forget that I’m always reminded of by this trip is that pain is stress. I have a Norco prescription, which is Vicodin with slightly less Tylenol, and I have used it in the past to make the drive easier. When the trip arrived this year, it’d been quite a while since I’d used any Norco (I was taking it last fall to help with the IRIS, but I’m on low dose naltrexone, and you’re not supposed to mix the two). It makes me nervous to take it, because sometimes it can make my breathing feel a little suppressed, which is an unpleasant and scary feeling. So that first day I guess I thought I would try to get along with minimal painkiller (1/4 of a tablet). That was a mistake. By the time we got me into the hotel room in Charleston, enduring the drive with almost nothing to blunt the jars and swaying meant I was in awful shape and only able to communicate a word at a time (“Dinner,” “Water,” etc.). It’s miserable to be in that situation, and it was really stupid of me to get myself into it when it could have easily been averted.
The other thing was that the last hour or so of that leg of the drive, there was a lot of sun coming into the vehicle because we were driving west into Charleston. I’d plastered myself with sunscreen even more than usual, as the feverish feeling meant I couldn’t bear to wear pants, and I had my eyes covered with a mask, but despite that, I kept feeling worse and worse. I don’t remember the light being such an issue in any past year, but it really did a number on me this time, and I have no idea why. Even with the mask on and my eyes closed, the light was just too much for me to handle.
Thankfully, I got a pretty good night of sleep in Charleston – I slept better on this trip than I think I ever have before – and I was looking better the next morning. We got ourselves down the road to Asheville, did the room choice roulette (“I guess they must have made some notes on us last year. This is about as far from the elevator as possible.” “This suite doesn’t have a door between the room door and the bed. There’s no way it’ll be quiet enough.” “Do you hear that squeaking from the air conditioner? I know I won’t be able to sleep with that going.”) After evaluating four or so rooms, we settled in for the duration.
So Tuesday was my appointment. Cheney sees one patient a day, so you show up lunchtime-ish, and when he’s finished your chart review, you’re called back.
I had been really worried in the run up to this appointment about the echocardiogram. During the echo, you get some of the special gels applied to your arm to see how your system reacts. Since last year, the new bottles I’ve gotten have seemed stronger, and I’ve had to move them down my body (to my feet) and apply less of them in order not to have bothersome side effects – anxiety, palpitations, insomnia. So when we arrived and his assistant popped her head out and asked if I was going to have an echo done, I blinked and said, “I didn’t know it could be optional.” I decided I was feeling awful already, and foregoing two hours in the echo room with the machine putting off heat and the probe digging into my ribs sounded just fine to me. I assume skipping it was an option because I’m a returning patient on a stable protocol.
The appointment starts out with a physical exam and vital signs, and here I got some very good news. When Dr. Cheney’s assistant weighed me, my weight was down four pounds, my fat mass down seven pounds, and my lean body mass up 3.5 pounds! This certainly makes sense, as I’ve been able to be up and around much more in the past year than in the several preceding it, and I must be building up muscle as a result.
The other good news came when I went to do the Romberg test, which I’ve had trouble with in past years, toppling quickly once I close my eyes. This year I could tell that I was far steadier with my eyes closed, and was actually a bit surprised to find that I didn’t fall at all. I think this has as much to do with having improved my musculature as anything else.
There were two things I didn’t manage this year that I have in years past. The first was the breath hold he usually has me do to see if I fail to desaturate. Because of how sick I was feeling, holding my breath even for the 30 seconds I have in years past sounded like a terrible idea. The second thing I failed at was having him taking my respirations while receiving oxygen. He put the cannula up to my nose and I immediately started to hyperventilate, which he’s said in the past is my body’s attempt to manage and reduce the amount of oxygen coming in. The hyperventilating made me feel anxious and I tore the cannula off within ten seconds. I just couldn’t deal.
After that, it was time for our discussion of symptoms, meds, and questions. My appointment with Cheney is the one time that I’d like to be at my best, and I’m always at my worst. Getting to Asheville is obviously way more stress than normal, I’m inevitably exhausted when I show up, and my brain is never working well. I prep my symptom list, my summary of the past year, and my question list in advance, and Chimp always does a great job of speaking for me, but still, I wish I could present better than I do, because I’d like to really be able to engage in the discussion that goes on during the appointment, rather than lying there inert and occasionally volunteering a monosyllable. The exhaustion makes me emotionally fragile too, and there’s always at least one point when I dissolve into tears from the stress. This year it was the heat that did it.
One of my physical difficulties is that I cannot deal with temperatures over about 71 degrees. It’s a hard limit. My body just isn’t able to cool itself effectively, and 75 degrees feels like 110. Cheney’s office has windows along one side, and I’ve had trouble in there in the past. I was hoping that because we were going in March this year (as compared to April last year and May the year before that) that the temperature wouldn’t be an issue. No such luck. Thanks, La Niña. It felt like it was roasting in there. I tried to endure it by plastering myself with cold compresses, but eventually I had to give up on that and ask to be moved out into the hallway where it was cooler, with my head sticking into his office. Nobody batted an eye at this, of course – ME/CFS limitations are well understood there.
He did note my cold, and that the back of my throat was totally inflamed. I mentioned to him that it was only the second cold I’d had in the course of my nearly eight-year illness. He said he thought it was possible that the reason I got a cold – symptoms of which are of course the body’s response to a virus – was that the GcMAF treatment had moved me from somewhat immune incompetent, meaning I wouldn’t develop cold symptoms at all, to somewhat immune competent, meaning that I would. I suppose this is technically good news, but not getting colds was a pretty good superpower to have, and it’s no fun to have the symptoms of a cold on top of ME symptoms.
He made some suggestions about changes I could make to my treatment plan in the short term that might help the symptoms of the cold go away faster. His suggestions were that I discontinue the MTF gel and Vitamin D, because both of those could make cytokine storms worse. He also reinforced that the wormwood extract and artesunate I’ve been using for years now are both antivirals, and should help.
And speaking of cytokine storms, before the appointment, I put together this plot of the two nagalase tests I had done, one before, and one while I was on GcMAF. (Click to enlarge.) The dots on the darker line are the two tests; the lighter line is a linear extension of that trend.
Dr. Cheney said that going into the use of GcMAF, he thought the aim would be to drive nagalase to zero, because zero is the normal value in healthy people. However, as patients arrived there, he found that a nagalase value below 1 appeared to coincide with the onset of a cytokine storm and regression – some cases milder, some more severe. Since then, he’s been counseling patients to stop before we get below 1. My graph definitely fit that pattern – if my nagalase had continued dropping in this roughly linear fashion (which of course, isn’t necessarily the case), it would predict that my cytokine storm would begin approximately where it did.
One of my questions for him was whether it would make sense for me to go back on a low dosage of GcMAF (which several people have suggested to me) or to proceed to MAF 314. He thought MAF 314 would not be a great idea for me, as he said it’s more powerful than chemical GcMAF and more difficult to control, and would increase the likelihood of another cytokine storm. Low doses of the chemical GcMAF, which is a known quantity and strength, was in his opinion be a better idea for me. But, he said, we needed to know where my nagalase was first before embarking on that again. (I had a nagalase draw a week before we went to Asheville, so it shouldn’t be long now.) He said he thought based on my rekindled cytokine storm symptoms related to the cold that my nagalase would turn out to still be below 1. We shall see.
As in years past, he noted with interest my particularly unusual sleep regimen, which I’ve written about here before. I told him that the Soma I’d added last March (which he’d prescribed for me) had saved my bacon, allowing me to knock down my use of Seroquel, and that the particular combination of things I’m on now has been giving me the best sleep I’ve had since I started needing sleep aids in 2007. He said, as he has before, that he thought he might share my protocol with other patients, since I’ve put so many years into figuring out each tiny thing that will help add up to a good night of sleep for me. And he was particularly interested in figuring out why the Soma had made such a difference – he said he planned to investigate its mechanisms. It’s always nice to leave feeling like I’ve contributed something he finds interesting and which might help other patients.
When we went to leave Asheville, because the sun had been so bothersome on the way down, Chimp was kind enough to construct some makeshift blackout curtains in the back seat of the Sequoia for me out of t-shirts and clips, so I wouldn’t have so much light coming in. As we were sitting on Wall Street by Laughing Seed (my fave Asheville restaurant), picking up our lunch, I reached into my bag for my sunscreen. Wondering anew about why I felt so crappy on the way down to Asheville, I turned it over to look at the ingredients. There, staring back at me, some way into the list, were the words “magnesium sulfate.”
Well, no wonder! Magnesium sulfate and I have a long history of not getting along. I’ve tried it in tablet, cream, and injectable forms, and all three have in the past caused tachycardia. So foregoing pants and smearing on at least double and maybe three times the amount of sunscreen I’ve used in years past probably has something to do with why I felt so terrible on the way down. I decided to skip the sunscreen and hope that Chimp’s blackout curtains would do enough to keep the light off of me so I wouldn’t burn. It did seem to work.
And a little personal note: One of the few times I popped my head up on the way home, we were on U.S. 19 in West Virginia, and just passing the exit for Birch River. And I thought to myself, “Isn’t that the home of Brier Run Chevre, or is my PEM-addled mind running the initials together?” Those of you who didn’t know me in my pre-illness life might not know that I was a Whole Foods cheesemonger for five years in the 90s. And indeed, I was remembering right (link autoplays video). The Savas invited me to the farm more than once, and I never did get a chance to get out there. Their cheese was one of the ones I picked for Chimp and my wedding reception, too. I wish I were well enough that we could have stopped.
My recovery from the trip has gone well. It took a few more days for the last of the cold to let go, and I noticed my brain coming back pretty well after just a couple days. The body part has taken a bit longer, but within a week I wasn’t really noticing the “I just went on a trip” post-exertional malaise any more. The one thing that’s been hanging around is the darned feverish feeling. I took some Norco for it for a few days after returning, and since then have been dealing with it by wearing just a tunic and continuing to forego pants. I don’t know if it’s caused by the cold virus or whether the stress of the trip is playing into it too, but I’m hoping it’ll abate faster than it took to do so the last time. Another five months of this would be pretty unwelcome, but if that’s to be the case I can deal with it at the level it’s at currently.