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Trip to the charite in Berlin, part 10

Before I became ill, I would go to an English-speaking “Stammtisch” (regular meeting in a pub, a very German tradition) once a week. We were a small band of native English speakers, UK or US.

At the beginning of the evening we would talk about serious stuff, books we’d read, the latest news and politics etc etc. By the second or third wine we would usually have descended, via topics such as 1970s sitcoms and other shared cultural experiences, to unashamed and very amusing puerile drivel. Sometimes the “evening” would end with me tottering through the streets of my village between 3 and 4 in the morning, humming happily to myself, only to discover on arriving at my front door that I couldn’t find my key.

I’ll spare you the next scene, except to say that it involved a bleary-eyed and long-suffering wife.

I still go to my Stammtisch. Now it is every 2-3 weeks, and I probably cancel at least half the time at short notice. When I do go, I usually just sit there feeling tired until the food arrives, which perks me up and gives me the energy to join in the conversation for about an hour, before I have to excuse myself and drive home.

I might drink one wine at the most, and am conscious of my health for every minute that I am there - am I remembering to lean back in my chair so I can last longer, was it a mistake to stand up and go and say hello to a neighbour two tables away (yes, it was), do I have the energy to get into an argument about whatever, or should I just nod and smile and keep quiet to save my strength.

The thing I miss most is being able to stay long enough for the descent into puerile drivel. It just doesn’t happen before 10:00, and I usually have to leave around then. One of the things I am going to do when I am cured (thanks for the hope @Rose49 ), apart from having a renewed awareness of how I use my time / energy, taking on numerous projects, being productive etc etc, is to waste time talking nonsense whilst enjoying every moment of it and appreciating what a privilege it is to be able to do so.

The reason I’m mentioning this is that one of the guys at my Stammtisch is a retired professor of neurology, so I gave him my report for his consideration. He had three things to say; firstly, he was very impressed with how thorough the Charite’s tests were. Secondly, he said that they had obviously spared no expense on the tests. Thirdly, he said that he wished his values were as good as mine, as I am obviously an extremely healthy specimen.

So that’s super. Back to the report. After the abnormal values section came the immunological diagnoses, which I shall now try to translate without really understanding it:
  • IgG slightly reduced, lgE slightly raised, other immunglobulins including subclasses: within normal range
  • MBL: normal
  • Numerically normal lymphocyte subpopulations und granulocytes, normal CD4/CD8-Ratio, monocytes slightly raised
  • monocytic HLA-DR-Expression (Immuno compentence marker) normal
  • No sign of an acute or chronic T-Zell-activation
  • slL-2R und IL-8 n. Erylyse normal
  • Monocytic TNFa secretion after 4h LPS-Stim. normal.
  • T-Cell function after 24h polyvalenter ConA-Stimulation: TNFa, lFNg, IL-2, IL-4, IL-5, IL-10 normal
Further findings:
  • ANA, anti-DNS-Ak in normal range
  • EBV-Serology: EBV-lgM: neg., -IgG: pos.; EBNA-1-IgG: pos.;, quant. PCR: neg. the serological constellation indicates a past EBV-Infection
There then follows a summary that my symptoms indicate CFS, which is often triggered by an infection or stress situation or recurrent infections.

Still to come:

Couple of paragraphs on causes & treatment of CFS
Recommendations (supplements and other, and what happened when I tried some of them)

Comments

I wish I could use the quote feature in my comments but since I can't (or at least I can't figure it out!) I am responding to the part where your Neuro friend commented how all of your blood work was perfect. I was curious if they ran any tests on you that were not blood work (sorry if I missed this) like a Tilt Table Test, Cardiac tests, spirometry, or anything functional? In the beginning my blood work was all normal too except for positive viral titers and auto-antibodies for Hashimoto's.

Now 3+ years later I have tons of abnormal blood work every single time including a positive ANA and several autoantibodies but I do not believe these would have shown up when I first got ill. But what did show up early on was POTS with very high sinus tachycardia, failed PFT & spirometry tests, failed TTT, ischemia on exercise echo test, etc. So it is not always the blood work that catches the abnormalities.

I know you said they did not test you on the autoantibodies from Cell Trend but did they do any functional tests of your heart, lungs or autonomic system, etc? Am just curious. The Charite sounds phenomenal and this is not at all a criticism vs. my own curiosity.
 
"I still go to my Stammtisch. Now it is every 2-3 weeks, and I probably cancel at least half the time at short notice. When I do go, I usually just sit there feeling tired until the food arrives, which perks me up and gives me the energy to join in the conversation for about an hour, before I have to excuse myself and drive home.

I might drink one wine at the most, and am conscious of my health for every minute that I am there - am I remembering to lean back in my chair so I can last longer, was it a mistake to stand up and go and say hello to a neighbour two tables away (yes, it was), do I have the energy to get into an argument about whatever, or should I just nod and smile and keep quiet to save my strength."

I'm able to join in a few social events from time to time. Your description just fits perfectly my experience. Thanks
 
@Gingergrrl apart from a poor man's tilt test they did none of that, although I had my heart and lungs tested and an endoscope, gastroscope and all the rest of it at local doctors to exclude any other causes before the Charite would see me. I really am as fit as a fiddle, apart from the ME of course.
 
"do I have the energy to get into an argument about whatever"
@Little Bluestem to be honest that is something a lot of people should consider even if they haven't got ME :) and it was probably time for me to learn it anyway.
 

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