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Trip to the charite in Berlin, part 13

So, after over 2 years of doing the rounds to have everything tested and excluded, learning about pacing, tracking my activities and refining my routines, and waiting for my Charite appointment, I now found myself with no future actions pending and nothing to do.

I read the last two lines of their letter again:

Since we are not able to offer further treatment to patients with CFS, we hope that you can implement the treatment recommendations together with your family doctor.

We are available for any questions from your family doctor.
I took this to mean that they would not be available for any questions from me, a patient. Having obtained my diagnosis, I was now on my own again with nothing but their list of treatment recommendations, in which they appeared to have thrown in everything but the kitchen sink.

Until now I had avoided experimenting with supplements and self-medication, being concerned that, not knowing what I was doing, it may lead to unintended consequences / a worsening of my ME, that any relief found may only be temporary until my body re-adjusted and took me back to square one or worse, and a reluctance to give my money to people making bold unproven claims.

However, the choice now was between inaction (not having anything left to do), or taking a punt on the advice of the professors in white coats from the Charite. I must admit I’m a sucker for authority, so after having ignored all the supplement advice and threads on PR since I joined, I decided that with the blessing of the Charite, now was the time to dip my toes into the supplement waters.

I went through the letter again, making a list of the supplements that might apply to / benefit me. The list contained Zinc, D3, NADH, Omega 3, B12, and Coenzyme Q10. I decide to trial them seperately, so that I could see which one was doing what.

First up were the easy ones, Zinc and D3.

Zinc
My zinc level was 10.1 µmol/l (whatever that means) when it should have been in the range 12.0 – 26.0.

The Charite recommended 40mg per day for 28 days. I took 12 mg per day for 100 days, which works out as the same amount spread over a longer time, as the packet said I shouldn’t take more, and I’m a cautious soul who didn’t want to exceed the recommended daily dose by too much.

At my next blood test with my GP, my zinc level was 7.44 mg/l (recommended range 4.0 – 7.5). They seem to be using a different scale, but I took this to mean that I have gone from below the bottom of the recommended range to near the top. So I seem to have got my zinc level up to where it should be, and no longer need to take it, so I've stopped.

D3
My D3 level (or more precisely "25-OH-Vitamin D3 Se", whatever that means) was 26.6 nmol/l when it should have been in the range 50.0 – 150.0.

The Charite recommended “1000 E” per day. I took “1000 IU” (which means “25 µg” – no I don’t know what any of these units mean either, but I wish they’d all use the same ones) per day for over 5 months.

At my next blood test with my GP, my vitamin D level (or more precisely "Vitamin D (25-OH)" was 32 ng/ml (recommended range 30 – 60). Not to be disheartened by all these different units and scales, I concluded that I’ve just about pulled myself up to the recommended range. I am continuing to take vitamin D, mainly because the box is still half-full of pills and I’ve paid for them. Also because I’m still near the bottom of the recommended range, and as I don’t go out much I should probably maintain my level with a Vitamin D supplement, which doesn’t seem to be doing me any harm.

Which is more than can be said for my experiments with NADH and CoQ10 …

Comments

Thanks, Tired Sam, that's really interesting. Did you feel any symptomatic benefit from getting your Zinc and Vitamin D up to normal range? I look forward to more about NADH and CoQ10...
 
I have improved in the last few months. It could have been the vitamin D and Zinc, but I suspect not. I've also lost weight, eat more healthily, and could be reaping the benefits of finally reducing my activities to my baseline and pacing strictly. I don't really know.
 
"My zinc level was 10.1 µmol/l (whatever that means)"
µmol/l = micro-mole per liter
The mole is used to express the NUMBER of atoms in a given sample. Another way to express the concentration of something is by WEIGHT, as in mg/l or milligrams per liter (see below).

"7.44 mg/l (recommended range 4.0 – 7.5). They seem to be using a different scale, but I took this to mean that I have gone from below the bottom of the recommended range to near the top."
YES; mg/l = milligrams per liter.

"My D3 level (or more precisely "25-OH-Vitamin D3 Se", whatever that means)"
25-OH-Vitamin D3 Se = 25-Hydroxy-Vitamin D3 in serum. 25 is the position on the Vitamin D3 molecule where the Hydroxy (Oxygen and Hydrogen; O and H) atoms are attached.

"I took “1000 IU” (which means “25 µg” – no I don’t know what any of these units mean either, but I wish they’d all use the same ones)."

1000 IU = 1000 International Units. 25µg = 25 micrograms. Isn't science fun?

I'm with you on continuing to take the Vitamin D.
 
@CFS_for_19_years thanks for that. Last time I studied a science subject I was 16. I just about scraped through physics and biology, but failed my chemistry exam so bady that I scored below a fail - unclassified.
 
"Last time I studied a science subject I was 16. I just about scraped through physics and biology, but failed my chemistry exam so bady that I scored below a fail - unclassified." You just destroyed my TiredSam-in-real-life-image. Pictured you as a physics lecturer at a university (because of your Schrödinger's cat post). ;)
 
Sorry about that. I've read lots of popular science and at various times have been very interested in probability, statistics, economics, game theory, software engineering, and physics, but basically I'm just a lightweight bluffing my way along and hoping not to be found out. Have you ever heard the expression "if you can't do it, teach it, and if you can't teach it, teach teachers"? That's me, teaching teachers how to teach.
 
Nice cover, SuperSam, to trick and catch English PACE-villains. Interesting job, I guess teachers are the worst students. :) I'm a teacher by training, too.
 
Hi Sam, Thanks for the continued Blog updates re: your trip to the Charite. I find it so interesting that they do not test patients for autoantibodies (and wondered if this would occur at a later point?) but it sounds like it will not and your treatment with them is now over and it's just up to you whether you decide to take some of their supplement recommendations? Do they see patients ongoing for follow-up or is it a one-time assessment and that is it?
 
"it sounds like it will not and your treatment with them is now over and it's just up to you whether you decide to take some of their supplement recommendations?"
Yep, that's it. I don't think they even see patients from outside Berllin any more, so I got in there just in time. A lot of the advice they gave me in my letter is now available to anyone who downloads their new document, along with some unfortunate references to CBT and GET. I might write about that sometime.
 

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