So, here are the final results, everyone.
(image attached at the bottom)
- First, as you can see, RBC count, hematocrit, and hemoglobin are dropping the entire time that symptoms are worsening, from 11/23 through (probably) mid-January. We didn't necessarily 'catch' those values at their lowest -- all I know is that by 1/18 they were on the rise again, though for the most part not back to their November values yet. By December, hemoglobin actually dropped below 'good' values although it wasn't yet clinically low.
- Second, RDW-CV and MCV are rising at the same time. By January, MCV had risen above 'good' values, although it wasn't yet clinically high. RDW is above what is considered a 'good' value for the entire time it was measured, and nearly but not quite exceeds the clinical range by winter's end (15%).
Together, these imply that
B12 or
folic acid (B9) are possibly growing more deficient over the winter months.
Relationship to symptoms
This doesn't come as a surprise to me, because
all the symptoms I associate with low Bs get worse and worse over the winter. By early November I had increased my Terry's Naturally pills from 2 per day to 2 in the AM and 1 in the PM. By December, I was taking 2 AM, 2 PM, or double the dose I was taking before November -- and despite these med changes, the RBCs, hemoglobin, and hematocrit continued to drop, and the MCV and the RDW-CV% continued to rise.
The
fatigue scale I used correlated roughly to levels of RBCs, hemoglobin and hematocrit dropping. That is, the lower these values became, the higher my fatigue. The exception was right after I went to the tanning bed for the first time, where I experienced an unreal boost in energy the next day, despite the overall pattern of everything but white blood cells (which correlated to tanning bed use -- more on that later).
Effects of light therapy
The Verilux light helped maintain my sleep-wake cycle and I think I even felt a bit of a lift in mood maybe. But it had no effects on my overall energy.
Tanning bed visits are indicated by black arrows. You can see that the tanning bed also
tremendously boosted my WBCs, or so it would appear (note the two jumps on the yellow line at 12/20 and 1/18). Right afterward, I would feel tired but pleasantly so, and the next day I'd wake up and my energy levels would be through the roof. Note that I felt a bit of increased inflammation like running a low fever and some increase in muscular aches. After the first time, I wrapped my face and the back of my neck to avoid direct exposure of those areas, since a lot of my pain is at the back of the neck. This made the difference in pain negligible, while still providing the lift in energy.
Recommendations
Not sure what to do about the B vitamins; I'm taking a lot already, and they don't seem to be making a dent in the winter months. Taking more seems to help but only to a point.
The doctor could provide B12 injections through the winter, but probably won't. Because none of these ever actually fell into the realm of clinically out of range, she found nothing remarkable in their general patterns. If I hadn't tried to abrogate my symptoms this might not have been true, but I'm not out to suffer, here.
The tanning bed really helps, enough that I'm now doing it every week, a Level 2 for 8 minutes at a time. This, by the way, is barely enough to tan my skin.
I wouldn't recommend this for everyone. Immune boosts help me: I have a few documented immunodeficiencies, and I experience less fatigue the next day when I take Lactoferrin before bed, which is to boost immune function. But for people who already have more active immune systems than mine, they might find the tanning bed effects quite unpleasant. As always, your mileage may vary.
Vitamin D
Showed no significant shifts and no especial pattern:
69 77 60 69 68 ng/dL.
(The big boost you see was when I switched to another form of Vitamin D briefly -- the 60 was when I backed off, worried I'd overdone it.)
Types of WBCs
No particular pattern I can find, though shifts were present -- and monocytes always seem what my book thinks isn't a healthy level (though again, it's not out of range). Monocyte percentages were not higher than my average on days when I went tanning.
Well, this was an interesting little experiment, and it worked -- I survived! No giant, month-long crash. It appears that the tanning bed is what 'saved' me. Whether that was because it boosted my immune function, though, is anybody's guess. I'll be tanning through March, and when November comes 'round again, you bet I'll be going right back.
As far as I know, this is the first light therapy used in ME, even though it is of course totally unblinded and a case study.
Over the course of doing this, I found a lot of people with ME talking about getting worse in the winter. I do believe it's a pattern and that this might help others.
As always, I'm not a doctor and this is DEFINITELY not medical advice; it's not even a "good" study because I kept changing things, I was treating myself, and I knew how I was treating myself. But it's food for thought. Hope it has the potential to help others.
Jaime
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