The Post-Appointment Post

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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18 Responses to The Post-Appointment Post

  1. Lew W. says:

    Thank you so much for relating your examination experience. Just what I have been looking for. It sounds like we could be hopeful for further improvement, is that a correct understanding?

    • Jocelyn says:

      We could be. What we get we won’t know until I’ve been on it a while. Outside of the clinic, there seems to be a lower proportion of responders, but that includes GcMAF from a couple sources, and who knows what protocols people are actually following?

  2. Francesca says:

    Hi darling–I just found and signed up for your blog since I suck so much at keeping in touch! At least I’ll know what’s going on with you this way…I miss you!

    Love,
    Francesca

  3. Rrrr says:

    thank you so much for this blog. there are a number of us starting gcmaf. if you feel you are able to join us, we’d welcome it. some of us are using BGLI’s GcMAF, the same as cheney’s source, and others are getting it from another ME/CFS doc in europe. anyway, we are found here:

    http://forums.phoenixrising.me/showthread.php?6019-GcMAF-for-XMRV-Gc-protein-derived-macrophage-activating-factor-anyone-taking-it

    warmly,
    rrrr

    • Jocelyn says:

      Thanks, Rrrr. I dropped by and left a couple comments, but I tend to mostly stay away from patient forums. I find them overwhelming in the same way I do light and sound. I’m sure you and others with the illness can relate.

      I am part of a Yahoo group of Cheney patients that is closely moderated, and that’s my exception to the rule. The message volume is low, and we’re all on roughly the same protocol, so that I can handle.

  4. Charles Beuttel says:

    I thought about getting an appointment with Cheney at one time, but his first appointment costs several thousand dollars and the secretary I spoke with did not seem surprised in the least that it was too expensive for me (like she was used to people calling and finding out they couldnt afford Cheney).

    I find it curious about GcMAF, which if coming from BGI, is coming from Europe and through customs, which can hold products up about 90% of the time, so there are issues of spoilage with Cheney’s GcMAF. If he has some way around that, I would love to know. I would also love to know how much he charges for the GcMAF and if he knows of another doctor who has access to GcMAF?

    • Jocelyn says:

      Hi Charles! Thanks for stopping by. I know many people aren’t able to afford to see Cheney. I am fortunate in that we are able to live on my husband’s salary and use my SSDI for Cheney and supplements.

      Dr. Cheney told us at my appointment that the customs issues have been resolved, at least for the time being. I think BGLI has figured out the documentation that will best get it through. Cost is another thing that had been fluctuating for a while and may be settling out. We were told it would be about $3,000 for the first 18 weeks if we bought the whole supply at once.

      I don’t know of another doctor doing GcMAF, but I’m sure that it won’t be long now.

    • Jules says:

      Customs hold parcels about 90% of the time? In whose experience??!! (I’m very sad for them I have to say.)

      I have ordered from BGLI several times and had no problem with Customs or with any aspect of obtaining and using GcMAF.
      (I’m injecting subcutaneously and all is going very well. I’m on Nexavir too.)

      Rrrr, thank you very much for the link to the GcMAF group.

      Jocelyn thank you for a wonderful blog post – I wish you the BEST with your GcMAF adventure.

      And Charles, well I hope you and/or your friend/aquaintence have a better sucess percentage when dealing with Customs. Sheesh.

  5. Inge says:

    Hi Jocelyn,

    thank you so much to take the time to report to us. I am from the UK and can’t see Cheneydue to not being able to travel, never mind the cost. Still I am very interested in his protocols over the years and I hope the Gc Maf will work out for you.

    I saw that you suffer ‘rampant’ Insomnia like me and that the magnesium spray helped you sleep without sleep meds . Does it still work? And if so can one purchase this from somewhere or is it an ‘only Cheney patients’ remedy?

    I tried his magnesium creme once but it did not do anything.

    I am grateful for a reply when your energy allows.

    Best Inge

    • Jocelyn says:

      Thanks for your comment, Inge. I still need the sleep meds, but magnesium spray has cut down on the amount I need most nights. This is the one I am using, but it contains magnesium gluconate, so you could just buy tablets of that, or of magnesium chloride. Magnesium sulfate is the usual form for supplements, but as I said, I don’t tolerate it well.

  6. Inge says:

    Thanks for prompt reply. I will try the ionic mag. I take Magnesium maleat and magnesium taurat in capsule form. The latter has tiny effect on sleep quality but I hope the immediate effect of sub lingual ionic form might be a better bet for immediate effect.

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  8. Alison says:

    I could tell from what Dr. Cheney said our appts must’ve been around the same time. My last one was March 22, 2011. You do a good job describing what it’s like. Congrats on getting him to smile! And yes, it is nice to have a genius doctor.

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