Anyone knows a doc in germany?

NotThisGuy

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Does anyone know a doc in germany for cfs? Just for diagnosis would be enough.
Would be great if anyone knows someone near Frankfurt am Main.
 

Banana94

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I ve seen some docs in germany which are popular as me/cfs docs. No one of them could really help me. I cant recommend Dr. Kersten at Bamberg - he only feeds you with vitamins.
For EBV maybe Dr. Bieger in Munich
For Lyme Dr. Kurt. E. Müller in Kempten
For Lyme Dr. Jens Neidert ( he‘s near Frankfurt- but long waiting time but he accepts also general patients- I mean with general inssurance)
For Mitochondria Dr. Bodo Kuklinski (havent seen him)
Maybe Dr. Wolfgang Huber in Heidelberg
I am now KDM‘s patient I think he‘s the best for my problem - gut etc. PM me if you have more questions!
And for heavy metal chelation Dr. Joachim Mutter at Konstanz!
 
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Gingergrrl

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I do know how long it takes to get an appt, but I know of people who were diagnosed at the Charite, and I believe that Dr. Schiebenbogen is the top ME/CFS specialist in Germany. Do you know @Joh or @MartinDH?
 

Banana94

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I do know how long it takes to get an appt, but I know of people who were diagnosed at the Charite, and I believe that Dr. Schiebenbogen is the top ME/CFS specialist in Germany. Do you know @Joh or @MartinDH?
As far as I know they only do diagnostics no treatment. And the diagnostics doesnt helps you to coclude whats you problem. They had a study with Rituximab but I think thats passed.
Maybe someone else knows more..
 

Hajnalka

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I do know how long it takes to get an appt, but I know of people who were diagnosed at the Charite, and I believe that Dr. Schiebenbogen is the top ME/CFS specialist in Germany. Do you know @Joh or @MartinDH?
Hi, the Charite offers a single appointment for diagnosis - but for people from Berlin and the state of Brandenburg only (since January 2017, because they couldn't handle the workload of being the only place for diagnosis in Germany (and apparently in Switzerland and Austria) anymore.

Didn't know you're from Germany, too @MartinDH, hi!

I know Dr. Schiebenbogen did a study with IVIG and immunoadsorption but I don't think she did one with Rituximab (but I might be wrong).
I don't know of a study with Rituximab either.

Edit: I somehow didn't see Banana's post before posting mine, so the following was already said.
@NotThisGuy, there's Prof. Huber in Heidelberg and Dr. Bieger in Munich (both private). If you google "Frankfurt ME/CFS" there is a private doctor (Dr. Neidert, no idea if he can be recommended) and a regional Fatigatio-group (they might have more information). Good luck!
 
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pamojja

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Thanks @Banana94 for that list. Of different docs with their specialties. Konstanz or Kempten would be closest to where I life in Austria.

Just for diagnosis would be enough.
Had a 60% disability revoked by our social-ministry due to having a remission with PAD. Therefore tried and got sort of a diagnosis from a ME/CFS illiterate Neurologist. Was enough for being accepted for a 50% disability renewal by our social-ministry. Of course, such a diagnosis isn't even worth the paper written on. But it worked in my case.
 

Martin aka paused||M.E.

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@NotThisGuy I don't know any personally.... But this doc from Munich: I had an appointment with him. But at the appointed time he wasn't available. I wrote him in Email but he never answered. So I would not recommend him due to his unreliability. But why do you want to get this diagnoses... there is no benefit until there is a treatment!

@Joh Moin :)
 

pamojja

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But why do you want to get this diagnoses... there is no benefit until there is a treatment!
In my case it really helps with yearly tax returns, due to extraordinary health care costs. Also with too low income we get some financial support with housing, but only when working full-time. Except with a diagnosis which states you're unable to work full-time.
 

Banana94

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I thought the original poster was asking about diagnostics vs. treatment.



I know Dr. Schiebenbogen did a study with IVIG and immunoadsorption but I don't think she did one with Rituximab (but I might be wrong).
she did also with rituximab, a famous german soccer player with me/cfs got 1 IV with Rituximab and his condition went dramatically down
 

Hajnalka

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she did also with rituximab, a famous german soccer player with me/cfs got 1 IV with Rituximab and his condition went dramatically down
I thought he got the infusion from a private doctor, was it at the Charite and was it part of a trial? If so, the trial was stopped after that, as there's nothing published (plus some info floating around the internet that this allergic reaction prevented a trial in Germany).
 

Banana94

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Thanks @Banana94 for that list. Of different docs with their specialties. Konstanz or Kempten would be closest to where I life in Austria.



Had a 60% disability revoked by our social-ministry due to having a remission with PAD. Therefore tried and got sort of a diagnosis from a ME/CFS illiterate Neurologist. Was enough for being accepted for a 50% disability renewal by our social-ministry. Of course, such a diagnosis isn't even worth the paper written on. But it worked in my case.
You're welcome. I think both doctors Dr. Kurt E. Müller and Dr. joachim Mutter have a very long waiting list. Dr Mutter also works at the Paracelsus Clinic al Ronc in Switzerland. maybe you get an appointment there sooner.
But I really have to say that Dr. Müller is a great environmental doctor, but in my case he couldn't help. but you can try it for sure. I need a doctor like KDM, I think he got the root of my problems. Feel free to slide into my DM's.
 

Martin aka paused||M.E.

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Nope, still alive, but apparently doing quite badly. There was actually an online article published about him today.
I don't know what to think about him... One the one hand I understand that he wants to pay for those medications... but on the other hand - if you think of the amount of many that was raised due to 1860 München - I think that he should spend it to researchers...
 

Gingergrrl

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I thought he got the infusion from a private doctor, was it at the Charite and was it part of a trial? If so, the trial was stopped after that, as there's nothing published (plus some info floating around the internet that this allergic reaction prevented a trial in Germany).
I thought he did it as a private patient and not part of a trial but I do not know the full story and could be wrong.
 

Banana94

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We dont know, on a youtube clip he says that he wanna donate the money to the charite in berlin that they can do another study which could help also other patients. I think he doesnt takes the money for himself. As Ive read he gets some payments from an insurance which he made for his career as a professional soccer player. He told its enough for livining and paying some treatments IV, Vitamins etc.
 

adelheid55

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I'm from Germany. For treating Lyme I can recommend Dr. Klemann in Pforzheim. He has got patients from all over Europe.
Some days ago there was a documentary on TV where Dr. Scheibenbogen was talking about the Rituximab study with Norwegian colleagues( Fluge and Mella). But I think it was not up to date because she didn't talk about phase 3...
Olaf Bodden is still alive.
If you want to know more please feel free to pm me.