Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Dr. Kenny DeMeirleir in Belgium would be your best option, I think.Hello,
do you have any tip to a good CFS doctor in Germany or Czech rep. where I live?
Thank you very much - I am really very tired
I have heard that Charite in Berlin has an ME/CFS clinic but it is supposedly very difficult to get into. Dr Carmen Scheibenbogen is a name that pops up from time to time in CFS EU research circles. I don't know anyone who has been seen at Charite but it does have a CFS program.
Hello,BCA have also opened a new clinic in the Czech republic not sure where, maybe if you e-mail the main clinic in Augsburg> Its new so maybe get an appt sooner.
You mean bcl-clinic.cz?@pepous
BCL CZ will do Skype.
Hi, please ,can you recall his prices more or less? Ideal place for us,but I don't know if we can afford.Thanks.My daughter did some preliminary diagnostics with this doc when we lived in Munich:
http://dr-bieger.de/impressum/
We moved back to the US before he could initiate any treatment protocols, but I was impressed with how comprehensive his testing was (and expensive). I have no idea what it would be like to be a long term patient of his, but it may be worth looking into if you need someone closer than Belgium (and Dr DeMeirleir can have a long wait list). My daughter now sees Lucinda Bateman and she utilized the labs that Dr Bieger ordered for her diagnostic process.
I have heard that Charite in Berlin has an ME/CFS clinic but it is supposedly very difficult to get into. Dr Carmen Scheibenbogen is a name that pops up from time to time in CFS EU research circles. I don't know anyone who has been seen at Charite but it does have a CFS program.
http://immunologie.charite.de/en/pa...tpatient_department/chronic_fatigue_syndrome/
Hi, please ,can you recall his prices more or less? Ideal place for us,but I don't know if we can afford.Thanks.
It has been two years since my daughter saw Dr Bieger; I have no idea what he is charging now. As a private doctor, I believe his initial consultation is several hundred euro. He is very good about answering emails. If you have concerns or need exact costs, send him an email and ask him about his current fees. Two or three hundred euro for a multi-hour consultation is about what I paid to see other private doctors in Munich.
The labs were very expensive--several thousand euros--but not as much as DeMeirler was charging at the time. I recall that DeMeirler's labs ran around 5000 euros or more. We didn't start treatment with Dr Bieger so I can't say what that would cost.
I hope this is helpful! Dr Bieger's report was incredibly valuable. It was about 12-15 pages long and provided a lot of analysis and detail about interpreting lab results. If you can only afford to see him to get this information, I would recommend it. His analysis would be useful for any doctor that may be treating you.
Thank you very much for your reply! I'm new on the forum , I understood just yesterday that my 13-year-old-son debeloped cfr after being vaccined hepatitis b while having mono.I've recently posted about our case, but I don't know if it is public as I still can't use the system.I'm more than scared.Will you write some sentences about your daugter's case or can I find your post about it? How is she now?Thanx again!
Thank you again! I have joined it.As soon as I am admitted I will share my story as for some reasons I still can't use the Phoenix well. Is it so dangerous to catch other virusis or bacterias while having mono? My son has just got streps from me.:-( Is that dangerous ,too? Thank you again.Might I suggest that you join the Facebook group, Parents of Kids & Teens with ME/CFS and Related Illnesses? There are a lot of parents there from around the world that have so many wonderful ideas and help. You sound like you need the support. They are all so kind. The moderator is Sue Jackson.
My daughter became ill at 17. She had had several serious viral infections including mono. She has had problems with her immune system always. It is possible a vaccine contributed to her problem but we can't say for sure. Her official diagnosis is "Chronic Fatigue Immune Deficiency Syndrome," dysautonomia, and autonomic neuropathy. Her case has become quite severe and she is being treated by several specialists. She was diagnosed 2 years ago.
Good luck! I hope you can join the Facebook group.