Golden hour (/month)

You can get a UVB light for ONLY UVB. They're expensive, though, and it's about $400-$500 US for the bulb and lamp.

The little light that I got is really supposed to mimic sunlight -- you're right, it's not supposed to have UV rays. It still had a positive effect, so I do wonder.

Here's the UVB 'real deal': http://www.lighting.philips.com/mai...dical-therapy-uvb-broad-band/uvb-broadband-tl

 

Used to have a "golden hour" in fall. Spring was my worst season. But that stopped about 20 years ago. It's pretty much crappy all year round now, and any improvements or worsenings seem independent of the season.

 

I had a brainstorm and would like to slap myself.

Today I went to a tanning bed and got 8 minutes of UVB. Do I feel better?

Yes. Yes, I do.

Let's see if it holds.

The tech there, btw, said that they often had people coming in for health-related reasons, and that they had a specific bed with more UVB for people with seasonal affective disorder and Vitamin D deficiency. I'll use it next time; this time I just used an ordinary UVB bed.

 

Okkk so I have three sets of results back, now, each two weeks apart. The pattern emerging isn't the one I expected. RBCs are dropping, as is hematocrit. WBCs are increasing at each reading. Let's see January.

 

I react to sun light, or, more precisely, UV light, via eyes and skin. (It causes brainfog, disorientation, headache/migraines, a bit like PEM. Sometimes the skin burns when the sun shines on it.) Jaime, do you think this could be due to UVA and UVC light, not UVB? It's why I didn't use tanning beds anymore.

 

That's possible, Inara, but I'd be cautious. I should mention that every time I go, I allow my face to be exposed VERY briefly and then wrap my head almost entirely, especially the back of the neck. I noted some mild inflammation there the first time, and have done that ever since.

 

So, here are the final results, everyone.
(image attached at the bottom)

1. 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.
2. 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

 

ages ago, i also liked tanning beds, thought they make me feel better coz im doing something for the skin... or so...

my hematology values (2002 - 2009) seem HIGH (either "+" or at the upper margins) when sick. only "leucocytes" are somewhere average.
all remained pretty much the same.

 

Interesting work @JaimeS! Love the hand drawn colour charts. Love to see data.

* Are you considering continuing to track to see what happens when April comes and the weather changes? Will your doctor provide weekly or biweekly safety lab order to facilitate this? I know with insurance discounts the tests are very cheap (I believe <$10 for the actual tests, don't know if that includes draw fee).

* It would be interesting to use a fitness tracker such as Fitbit and see how activity level and heart rate track to those blood tests and well being? Do you own such a thing?

 

You certainly considered it, but still I thought I'd ask: You could give B12 injections s.c. yourself?

 

I remember I was taught -- De Meirleir recommended them. Couldn't get them at the right dose or formulation in the US so it turned out to be a moot point.

I wonder how cheap they are without insurance.

 

It's really easy. (But now that I give IGG s.c. at home, everything with needles seems easier. )

It's less than 1€ for one phial à 1.5mg hydroxocobalamin. The adenosyl- and methylcobalamin versions are more expensive here. Isn't there B12 by Pascoe for instance in the US?

 

All because I didn't have the time / energy to try and figure out how to make different results on different scales layer over each other in Excel (admits the awful truth!)

I think she's had enough. I was pushing my luck asking to get bloodwork done every other week over the winter, and then she wasn't especially willing to trust my conclusions based off of the data.

I don't. I know I had to be a lot less active over the winter to maintain any semblance of normalcy. My phone tracks steps per day and they were low, low, low.

 

Not in the US, no. They ship to Canada.

 

@JaimeS I never had any effect from B12 shots, but 5000 mcg drops from Shot-O-B12 among others were very effective (and cheap) if you haven’t already tried them

 

A good chance they saved my mother's life. She was getting a shot a day there for awhile.

I remember being 11 and being pretty sure she would die. First thing to help her.

[Edit: Nature's Plus Brand?]

 

Wow, thats interesting.
The tanning is an unexpected result, i would not have forecasted that by a long shot. What gave you the idea to try it?

You don't have to use B12 injections, sublingual works fine. I take a 1200mcg tablet daily, and most of the absorption is from high concentration in the gut so i just swallow the tablets. And its works, the doc wondered why mine was something like 1400(?)

I take methylfolate (high folic acid may be problematic long term). It helps reduce my headaches and is not pricey (at least around here)

The light therapy does nothing for me, spent many years chasing it before i was diagnosed with ME. Glad it works for you though

From your recent posts I'm curious if there is any illumiating immune testing that would be available from a blood test and that i can ask for (seeing GP tomorrow).

 

I can't say I've ever experienced a "golden hour" or anything short term resembling remission...

 

The wholllle thread.

Seriously, I started wondering why I felt so terrible in the winter, found out that we get negligible amounts of UVB over the exact period of time I feel crappy (in the Northern Hemisphere, anyway), realized people use UVB therapeutically for skin conditions and MS and read a ton of papers on this, researched really expensive therapeutic centers and then finally realized that tanning beds are a cheap alternative.

I paid about $8 US for a session. Two lattes worth. Absolutely worth it.

The thing is, high B vitamins stop working for me up to a point. I can only absorb so much thru the gut, maybe? Hard to say why. And if you up it too long, you may downregulate the enzymes needed to break it down. I noticed this with a few supplements: taking too much feels precisely like taking too little.

Eh, like I said... barely. Not worth the price of purchase for ME (crashes, cognitive or physical issues), but it might help with mood and/or circadian issues if that comes in your particular bag of symptoms.

This was all just complete blood count, so there's nothing special here. All the same we were looking for patterns and changes over time, not just things out of range. Don't know how helpful it would be to get a snapshot in this case.

 

I don't have remission, but I feel much better briefly in the fall, and worse in the winter. Do you feel worse in the winter?