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My trip to the Charite in Berlin

Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
@TiredSam Somehow I missed this the first time around and haven't read the whole blog yet but am curious, did the Charite talk to you about their research studies with plasmapheresis and IVIG and did they test you for their autoantibodies through Cell Trend Labs in Germany? I've been trying to get this test from the US and hitting a road block.

Sorry if you explained or mentioned this later in the blog and I missed it. What I've read so far of your blog is great and I agree you are a very good writer!
 
TiredSam

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
Gingergrrl said:
@TiredSam Somehow I missed this the first time around and haven't read the whole blog yet but am curious, did the Charite talk to you about their research studies with plasmapheresis and IVIG and did they test you for their autoantibodies through Cell Trend Labs in Germany? I've been trying to get this test from the US and hitting a road block.

Sorry if you explained or mentioned this later in the blog and I missed it. What I've read so far of your blog is great and I agree you are a very good writer!
Click to expand...
They did talk to me about their research studies, and at the time I understood it and it was all very interesting, but I'm afraid I forgot what they told me (if it's not in the blogs) fairly soon after the appointment, it was 1.5 hours and a lot to talk about. They didn't give me the Cell Trend test.
 
Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
TiredSam said:
They did talk to me about their research studies, and at the time I understood it and it was all very interesting, but I'm afraid I forgot what they told me (if it's not in the blogs) fairly soon after the appointment, it was 1.5 hours and a lot to talk about. They didn't give me the Cell Trend test.
Click to expand...

Thanks and I will read the rest of the blog but had been curious if you were offered to be in one of the studies or if they were something that interested you. The studies at the Charite are the closest match to what I am looking for and what sub-group I believe myself to be in with the autoantibodies. Maybe they are only offering the Cell Trend test if you are in the study vs. to all patients? I have no idea how it works there but am so curious to learn more. That test is on my very long "to do" list even if the results would just be academic for now. Thanks again!
 
TiredSam

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
Part 9 is up. No flowery language this time, just the straight facts, and a list of everything in my blood the Charite checked, for those who are interested in that side of things.

Recommendations and supplements still to come ...
 
W

worldbackwards

Senior Member
Messages
2,051
Are you disappointed that they didn't really find much then? Do you think that there was more that they could have looked for?

I ask as someone who's always been too ill to do this stuff, but largely regarded it as a waste of money because it wouldn't really lead anywhere anyway in the UK.
 
TiredSam

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
Gingergrrl said:
Sam, I look forward to reading it shortly... Although I like the flowery language LOL
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Dammit so do I, so I've just poured myself a glass of wine and am currently writing part 10, which is as flowery as part 9 is dry :) :wine:.

worldbackwards said:
Are you disappointed that they didn't really find much then? Do you think that there was more that they could have looked for?

I ask as someone who's always been too ill to do this stuff, but largely regarded it as a waste of money because it wouldn't really lead anywhere anyway in the UK.
Click to expand...

I'm not disappointed, I didn't expect them to find anything, but I did want everything checked and they were very thorough. I also now have the diagnosis I wanted on paper.

I share your concerns about wasting money on tests that wouldn't really lead anywhere, which is why I avoid various private doctors who call themselves ME specialists, but this was different, it didn't cost me a penny (covered by my regular health insurance) and the Charite have a sterling reputation, my report was signed by Dr C. Scheibenbogen. Well at least it should have been, her name was on it with a space for her signature, but I expect she's very busy ...
 
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Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
TiredSam said:
Dammit so do I, so I've just poured myself a glass of wine and am currently writing part 10, which is as flowery as part 9 is dry :) :wine:.
Click to expand...

I am about to read it all shortly and hoping that Part 10 will not disappoint...

TiredSam said:
the Charite have a sterling reputation, my report was signed by Dr C. Scheibenbogen
Click to expand...

That is my feeling on the Charite and I am about to do some tests (hopefully on Mon) through Cell Trend Labs to see if I test positive for the autoantibodies that she tests for. But I will write this update in another thread to not take yours off track...
 
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