The Post-Appointment Post, 2013, Part II

Part I is here.

Nasal VIP wasn’t the only thing that Dr. Cheney and I talked about this year. I’m sharing this grab bag of questions and answers because I know I always learn from what other patients ask him.

How am I doing?

My physical exam was substantially the same as last year; I had a fever (I’m never sure if it’s their thermometer or if I really am, because at home I’m well below 98.6, but always well above there); my pulse jumped from 85 (already high because of stress) to 102 when I stood up, but those numbers are pretty similar to previous years. The crimson crescent on my soft palate was “almost purple,” he said, but still better than last year, when I had a cold, and when he said, “Oh my goodness!” I managed to not fall over on the Romberg or the tandem stance again, but did fall on the augmented tandem stance (I think that’s one foot in front of the other and arms up, with eyes closed), which is what I did last year as well. He called Dixie, his assistant, in to see my fingerprint changes, which he has said in the past are some of the worst in the practice, with both extreme smoothing and crosshatching.

When he put the nasal cannula of oxygen on me, I tried to stick it out and not tear it off in the first ten seconds, like I did last year, but that meant that I hyperventilated (which is what I’ve always done in the past, too) and threw myself into a panic attack because, paradoxically, my brain wasn’t getting enough oxygen: “What happens when you hyperventilate like this is that it restricts bloodflow to the central nervous system, and it causes you to vasoconstrict, and it also causes a left shift, so your brain is suddenly without oxygen. And it does not like that. The general response to smothering is extreme anxiety. Your brain can’t distinguish between whether it’s smothering, or whether it can’t get oxygen – it can’t understand it. So that can bring about quite a bit of powerful emotional responses – exactly how, have you ever seen in the movies how someone’s being smothered with a pillow? They freak out, and this is the same.

When I got home, I entered all the details of my physical exams from each of my appointments into a spreadsheet so that I could compare them. One thing that stuck out was that the corona radii in my eyes were much worse than the year before, and worse than any year except for the first time I saw him in 2009. I asked him whether there was any connection between the corona radii and my worsened light sensitivity as compared to last year, and he said, “This is possible. As corona radii increase, light sensitivity might also increase. Corona radii can vary over time.”

Methylation Cycle

It seems like a number of my ‘net friends with ME/CFS have been doing one form or another of methylation testing and supplementation within the last year or so. I asked Dr. Cheney if he’d helped any patients work with data from 23andMe. He answered that in the past, they’d done testing for MTHFR and in response, given those patients Folapro instead of folic acid. “The problem we observed was that a lot of people with that SNP who we gave folapro to, which should help them, looked worse in the end. And the idea there is that there’s a reason to be methylation blocked. And so if you successfully unblock the methylation cycle, which you can do easier with folapro, if you have that SNP, is force you to make less glutathione, ergo the mindless attempt to unblock the methylation cycle, without realizing that the methylation block is essential to make glutathione is a mistake, and all that the SNP did was magnify your mistake. So I haven’t found it as useful as you might otherwise believe. Now if we were dealing with some other diseases, other than chronic fatigue syndrome, I would say absolutely, knowledge of the SNP might inform one’s approach to methylation, but not in the special case of CFIDS, where you actually want to block the methylation cycle.”

In one of his arguments of both sides of an issue, he then said, “Now here’s where I could be wrong on that. The study of HERVs by Kenny De Meirleir – that are expressed – what causes the expression of HERVs? Methylation block.” So there is a choice, he explained, between helping patients make more glutathione by not unblocking the methylation cycle, or trying to shut down the HERVs by supporting the methylation cycle and creating more oxidative stress in the system. He admitted at that point, “So I haven’t figured out exactly what I should be doing, except my sense is to follow what the echo is saying, because the echo informs me about whether the move improves redox control or makes redox control worse, because I think that’s the core problem. And if it seems to help redox, I tend to go that way, if it tends to be something that hurts redox, then I don’t go that way. And I think I’m better informed that way than the theoretical view of attacking something vigorously, because it seems like, and you may remember, that the people who first announced this methylation protocol say some people get worse. And that’s what I’m worried about, is the ones that get worse. But then some people get better, because some people have this problem, and they might better off with…increasing the methylation cycle…”

Fingerprint Changes

I’ve talked about my fingerprint changes before. I’m to the point now where they’re really almost gone. Following on the mention of HERVs, he proceeded, “Now guess where they found this thing expressed, recently? HERVs were found in fibroblasts, And if HERVs are expressed in fibroblasts, you get defects in collagen synthesis. And that produces these fingerprints. How can we prove that? We can prove that by doing punch biopsies of your fingerprints, and staining the fibroblasts for these HERV proteins. And that wasn’t doable a few years ago, but it is now. So we could – one of my ideas – and you would be first on my list, by the way – is to send you to the dermatologist downstairs and have him do a punch biopsy on your worst fingerprint, send that to someone that can fluorescently stain it for HERV proteins. And then your fibroblasts would light up with HERV proteins. And if we saw that, I would make the argument that we should pounce on your methylation cycle, and throw everything and the kitchen sink at you, including measure any SNP that might affect this, and really go after it. But my concern is that may not work very well if you have glutathione deficiency, which you also have, and that might just make things worse.” 

Probiotics and Insomnia

Since I did that course of GcMAF in 2011, I’ve become sensitive to yogurt and kefir, both of which I used to tolerate well. I wondered what might be the cause of it, and if perhaps it had something to do with a leaky gut problem. Dr. Cheney replied,“That’s possible. Another possibility is that it’s increasing metabolic demand that you can’t meet. That creates a supply-demand mismatch. That will force you to live with adrenaline to create more supply, then you can’t sleep. I kind of like that idea, watching how sensitive you are to hyperventilatory response. Your supply-demand mismatch is not tolerated at all. The peculiarity about that is that even an improvement in demand, if not met, creates anxiety. Or a decrease in supply could produce the same. So my guess is that it’s creating a a supply-demand imbalance, but I’m not sure which one it is exactly and exactly the mechanism. It could be an immunologic effect, that would be a leaky gut issue, the immune system activates, that creates oxidative stress, that creates lower supply. That’ll create a supply-demand mismatch. That’s another possibility. All that tells me is how sensitive you are to this situation. See most people, immediately, demand goes up, supply goes up. You can’t do that. Unless you throw on a big wad of adrenaline, then you can.” 

Looking at my notes, he pointed to the fact that I’ve also had to reduce my dosage of DHEA cream, because it was also causing sleep problems. “Here’s another example – slight increase in DHEA, caused her insomnia to worsen. That’s an anabolic hormone, it increases demand, that she can’t meet, so she then has to resort to adrenaline to kick up the supply to meet the demand, so she’s then increased adrenaline and she can’t sleep. Then once the adrenaline subsides, she’s wiped out.”

High Sulfite

My urinary sulfite tested very high last fall (5.70 on a 0.15-1.50 scale). I asked Dr. Cheney what that indicated, and whether we needed to do something about it. He explained that the high sulfite indicated glutathione depletion, low reduced glutathione. “And that’s high, I think that’s one of the highest in the practice. 5.7, I don’t remember anyone higher than that. So you get the gold star for having the highest sulfite, which means you have the lowest reduced glutathione. Which, by the way, in my view, is at the core of this illness, I just don’t know what causes it.”

Low SOD

I had a test come back with very low SOD (1.3 on a scale of 9.4-13.6), and asked what I could do for it. Dr. Cheney suggested Standard Process’s hawthorn, which is a direct SOD inducer and improves heart function.

Adrenal Support

While I was helped a great deal during the trip by the Cortef prescription Dr. Cheney wrote for me (originally while I was on GcMAF, to have in case of IRIS), it’s not something I feel comfortable taking all the time, even at the low levels (10 mg) he tells me have been found beneficial in at least one study of CFS patients. I thought I might be ready to try a supplement for it, though, so Dr. Cheney suggested Innate Response’s Adrenal Support formula, which said he thought would be very beneficial if I could tolerate it.

P5P and Sam-e for Insomnia

P5P and Sam-e are the two latest additions in the continuing saga of trying to get me a good night’s rest. I added them in my “second round,” the latter whack of pills, which I take between 3 and 5:30 a.m. (I do this because I found a long time ago that if I took everything at the beginning of the night, I wouldn’t sleep through, and that frankly, at this point, the amount of stuff I take, if I took it all at once at the beginning of the night, might be dangerous to me.) I asked Dr. Cheney if the success I had adding those two things indicated anything about my insomnia to him. He replied that P5P is essential to the manufacture of serotonin, which is essential to making melatonin, and that Sam-e aids in the methylation pathway that’s necessary to metabolize neurotransmitters, so taking the two together would likely be better than just taking one or the other.

Facebook Data as Wellness Indicator

zeebly This graph, which I printed out and included in the packet I gave Dr. Cheney, was made by a web app called Zeebly Social Me, which grabs your facebook data and makes an infographic with a series of statistics about you. Mine was only mildly interesting, except for this eye-popping graph. That big spike in the grey line (the number of links I posted to facebook) happened in March 2011, which happens to be the month I started both Soma and low dose naltrexone. One or both of them seems to have had an enormous affect on me. Unfortunately, there is that huge drop a few months later – and that corresponds with when I dropped into several months of cytokine storms because of my course of GcMAF. Once we explained what the different lines stood for (shockingly, Dr. Cheney doesn’t seem to waste a lot of time on facebook), he thought this was very interesting (“Cool! That’s almost as good as one of those piezoelectric motion detectors that you wear on your belt that tracks your movement.”)

Wrapping Up – Other Things to Try

Dr. Cheney always has a few more things in the New Stuff to Try list at the end of your appointment. This year, he suggested I add progesterone, because my symptoms get so much worse toward my period. He also suggested I try anatabine, colloidal silver (for its antiviral properties), selenium, and he originally suggested a mineral supplement called The Gift, but rescinded that suggestion when he realized it would possibly interact negatively with my amalgam fillings.

So what now?

Now I try to add some of these things to my regimen, and if I want to take nasal VIP, I have almost two dozen blood tests to have done. (That will take absolutely ages, because if I give any more than a tube and a half at a time, I crash.) So I haven’t added any of the new stuff yet – there have been some other things I wanted to work in first, and as I’ve mentioned recently, I’m terrible at starting new stuff, and it just takes ages for me to get comfortable enough to do it. I’ll let you know how it goes when and if I do.

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22 Responses to The Post-Appointment Post, 2013, Part II

  1. rivka says:

    your cheney report backs are so very helpful and informative. thank you! — rivka

  2. Rebecca says:

    Thanks for the great write-up! Lots of helpful info. Good luck with your new treatments!

  3. Pingback: The Post-Appointment Post, 2013, Part I | No Poster Girl

  4. Meg says:

    Colloidal silver is mostly used for topical/surface disinfecting, it is not as useful internally. It is not harmful as such, but long term use will turn your skin a blue-gray color. I have seen pictures and one patient in person. They look like walking corpses. It takes a while to build up that much residue, but I definitely recommend against using it over long periods.

    • Jocelyn says:

      Argyria. Yes, I’m aware of that. I should say, those are suggestions, and the colloidal silver is not one I planned on putting into practice.

  5. Shirley says:

    Thank you for your informative post, very interesting. I can relate to the supply/demand delimma certainly, anything that is supposed to give you energy mostly causes me to do more than my body can handle. I have found colloidal silver helpful taken internally, especially when I feel a viral flareup, when I get the canker sores in my mouth and for any sore throat. The amount you’d have to take to get argryia is large and the effects have been over exaggerated. I wonder what Cheney would say about IV hydrogen peroxide, when he is of the open-mind-try-new-things state. I finally decided in desperation to try them, have done about 25 over a period of time and they have eliminated the awful flu-like feeling that made me so miserable. Just curious, no one talks about it but I found them to be a life saver in terms of quality of life. I still have to budget my energy expenditure carefully but I can do more and feel much better.

    • Jocelyn says:

      I have never heard him mention them either positively or negatively. But it seems like everything out there helps somebody, if not everybody.

  6. silima says:

    Hi Jocelyn,

    Lately a lot of people with ME/CFS are looking into Ehler-Danlos Syndrome, it appeared that a lot of people were misdiagnosed with ME/CFS but actually have EDS (but possible to have both). I am in the process to get it checked as I have nearly all the symptoms (very similar to ME/CFS)

    I not know if you have looked into it yet, it’s so new that not many ME/CFS specialists have caught up yet. Mine (in Melbourne) is very interested in it and if I get the diagnosis I’m his second patient who has EDS. I will know next week.

    There is a long thread on Phoenix Rising about it: http://forums.phoenixrising.me/index.php?threads/is-me-due-to-ehlers-danlos-syndrome-stretchy-veins.20351/

    The title is a bit misleading but the info is great! Btw you don’t have to be hypermobile to have EDS and not all EDS people have POTS.

    Hope this is of any help :) Amulya

    Sent from my iPad

    • Jocelyn says:

      Hi Silima! You’re not the first one to suggest this, and I’ve read a lot about it. I have one area of flexibility that resembles EDS (I can touch my thumbs to the insides of my arms), and maybe one or two other characteristics on the list of several dozen, but that’s about it.

  7. Interesting about your reaction to getting blood taken. You are more sensitive than I am, but I had four little vials taken a few weeks back for some tests, and it took 5 or 6 days to get back to “normal”. It temporarily wiped me out.
    I’m a bit fascinated by your Facebook graph, matching FB usage to health status. Maybe if we’re looking for another title for the condition we could go with RFBUS (Reduced FaceBook Usage Syndrome). :-)
    Good luck with the new stuff, I wonder do you have a blog post on GcMAF and your experiences with it? I’ve been curious about it for a while, though don’t know much about it.

  8. kathy d. says:

    This is amazing. I am always in awe of what you learn at Dr. Cheney’s and then explain. I’m not well-informed about the issues discussed above. What is methylation? I’ve never heard of it. I have tried different “remedies,” over the years but nothing really makes any difference except getting a decent night’s sleep. What I eat doesn’t matter either although I try to eat a balanced diet.
    My goal is just not to get sicker or have a reaction to any medications, vitamins or herbs. This has happened.
    I’d be very careful about some of these things, including hormones, such as progesterone. I had horrific gynecological problems and ended up having a hysterectomy. Menopause made it all worse. But I almost had a stroke when taking estrogen and progestin (synthetic progesterone). I did have a T.I.A.-type incident after nine days on these pills. Never again said my doctor, no hormones at all. So, be very careful.
    My sensitivities to medication was borne out in that crisis.
    I love to read your posts about these medical issues, tests and possible treatments. I am very leery of doing any of these things from past experience. I wouldn’t even subject myself to some of the tests you describe above. My attitude is just live simply, do what you know helps and try to avoid anything that will aggravate symptoms or cause other problems.
    Best wishes in all of this.

  9. Lotus97 says:

    I have no clue why Dr. Cheney is saying what he is about methylation, but there’s a study that contradicts his statements:

    http://www.mecfs-vic.org.au/sites/www.mecfs-vic.org.au/files/Article-2009VanKonynenburg-TrtMethylStudy.pdf

    Glutathione levels rose over the course of the study and many of the participants symptoms also improved. In addition, thyroid function imroved.

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