Trip to the charite in Berlin, part 9

The report was 6 pages long, and started with the following:

Diagnoses:
  • Chronic Fatigue Syndrome (CFS) (G93.3)
  • No indication of immunodeficiency (D84.9A)
The WHO’s ICD codes 2016 section G93 is “Other disorders of the brain”, and G93.3 includes benign myalgic encephalomyelitis, chronic fatigue syndrome and post-viral fatigue syndrome. Chronic Fatigue Syndrome is what they always call it in Germany, but as long as I’m in G93.3 which is the code for ME, that’ll do for me.

The rest of page 1 was taken up with a description of my case history, containing a very accurate account of what I had told Dr Hanitsch. I was pleased to read that no assumptions or interpretations had been added, just a description of the course of my illness over the last 2-3 years as I had told it to him.

There was a description of my poor man’s tilt table test (69 bpm to 91 bpm) ending with “no indication of POTS”.

I had scored 26 points on the Chalder Scale (out of 33), 32 points on the FACT-F Subscale, and had 40/100 on the Bell scale. I fulfilled the Canadian Consensus Criteria.

There followed a section on abnormal laboratory parameters:

Albuminfraktion 68.9 P+ [55.8-66.1 %];
Gamma-Globulin i.Se 10.6 P- [11.1-18.8 %];
lmmunglobulin G 6.74 P- [7.00-16.00 g/l];
lmmunglobulin E 112.3 P+ [0.0-100.0 kU/l];
25-OH-Vitamin D3 Se 26.6 P- [50.0-150.0 nmol/l];
MCHC 36.7 P+ [31.5-36.0 g/d|];

Not knowing what any of the above means, they all seem ok to me, if any of them are outside the recommended values it is only by a little bit. The exception was vitamin D.

My other laboratory parameters were attached at the end of the report. For those who are interested in what they looked at, here is the list of things they tested, my values for all of them I presume were considered normal, or at least not abnormally out of range:

View attachment 17532 View attachment 17533 View attachment 17534

Still to come – the Charite’s recommendations and my experiences with some of the supplements they recommended. Stay tuned ...

Comments

Sorry for my confusion, but do they give you an actual number for each test result? I see the name of the test but I don't see the numbers or the range to know if anything was flagged as abnormal? But maybe my screen is just cutting it off?

Also, did you have the option to be tested for the nine autoantibodies through Cell Trend (her lab in Germany) and you declined or was this not offered to you unless you were in a study? Just wanted to clarify. Thanks again!
 
For the conspicuous values (the 6 listed in the text) I included the ranges and my personal values. For all the others, where my results were not conspicuous, I just listed the tests they did, but chopped off my personal values. I didn't see what purpose would be served by including them, but I thought some people would be interested in seeing what was tested for. I wasn't offered the Cell Trend test and didn't ask for it.
 
Thanks, Sam, and I totally missed that part when I first read it and I think I was looking for the word "abnormal" vs. "conspicuous" like in the US. Did they explain what the abnormal ones meant? I've had more abnormal tests than I can count in which I am just told that they do not mean anything and not to worry about it.

Thanks for clarifying re: the Cell Trend tests and maybe they are just offered as part of the research or if a patient requests it? If I didn't know that I was positive for other autoantibodies, I probably would not bother either, but in my own case, I want to know.

Looking forward to Part Ten...
 
I was told by Cell Trend that when I get my report from their autoantibody testing that it will be in English (and if not, I might need your help figuring out what it says)!

I also find it interesting that they only checked for EBV and no other viruses or pathogens? EBV has been a major culprit in my own case but I am curious why they did not check for others?
 
Great that you got a "real" diagnosis! From what I´ve read in German forums, most people get a "V. a. CFS" (suspected diagnosis of CFS) at the Charité. It was even discussed in forums that the Charite isn´t allowed to give a diagnosis as long as no biomarkers exist and the sense of going there with a suspected diagnosis and leaving with a suspected diagnosis. So that´s really good news! Now I´m hoping for a real diagnosis, too :) Thanks for sharing!
 
Looking forward to part 10 with the recommendations. Another patient posted his letter from the Charite in 2014 and back then they recommended CBT and GET. Hope they stopped doing that!
 
Looks like I was lucky - no V.a. I can say now that no CBT or GET recommended. I don't read the German forums, had a look at the Fatigatio forum once but didn't seem to be much going on.
 
@Sam Do you plan to do other tests (no at the Charité)?

Somebody knows how do they treat EBV at the Charité?
 
Thanks TiredSam, it´s a relief they don´t recommend CBT and GET anymore! You don´t miss anything in the German forums, PR is ME/CFS-heaven, it can just be too exhausting for me to read and write in English. @frederic83, I don´t know if or how they treat EBV at the Charite - as far as pwme are concerned, the Charite offers one appointment for a diagnosis, but no treatment and no follow-up appointment.
 
Got my brown envelope after 17 weeks and with it a "real" diagnosis, too (CFS and POTS). Thought, that would change things, but so far my GP wasn´t even interested enough to read the report and thought the recommendations were "ridiculous" (thanks, they´re my only option right now) and the cardiologist sent me home and told me to see a CFS specialist (very funny, there is none in Germany). Hope, you had better luck:)
 
Sounds like you've got a crap GP. Glad you got a credible diagnosis anyway. I'm having a tilt-table test next week.
 
I could think of a couple of more things to be tested, e.g. EBV-EA, CMV, HHV6, Lyme disease, Rheumatoid factors, other antibodies (e.g., Sjogren's, Celiac disease, thyroid ABs), anti-streptolysin-O etc

But maybe these were tested before, so they didn't have to do it all over again. Or they say this is not within their remit, but I personally think it should be.
 

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