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BCA Clinic in Germany VS US Doctorss
Hi all,
I’ve been reading this forum for the last few years and It’s been a fantastic source of info as well as support on coping with this disease and it’s many complexities.
I’m been suffering from Lyme’s for the last 10 years or so and have tried a variety of antibiotics and herbal remedies.
I’m currently living in London, UK and currently exploring ILADS, LLMDs abroad. I’m currently with the a Hospital with the UK but am looking for expert treatment elsewhere.
I’m read about the BAC (Borreliose Centrum Augsburg) clinic in Germany and they present themselves well and appear to have an excellent expertise in treating Lyme and attend / host ILADS conferences. I’m almost certain I’ll take steps to make an appointment with them but was looking to see if I can find feedback from actual patients as it’s quite an investment to go with them in terms of both time and money.
I was curious to know how people felt about them and what people’s experiences are (couldn’t find anything recently on the forum).
I’m also looking at doctors in the US and curious to know if people have chosen between or two or have had experiences with both to compare.
Many thanks and I look forward to hearing from you.
Ade
I’ve been reading this forum for the last few years and It’s been a fantastic source of info as well as support on coping with this disease and it’s many complexities.
I’m been suffering from Lyme’s for the last 10 years or so and have tried a variety of antibiotics and herbal remedies.
I’m currently living in London, UK and currently exploring ILADS, LLMDs abroad. I’m currently with the a Hospital with the UK but am looking for expert treatment elsewhere.
I’m read about the BAC (Borreliose Centrum Augsburg) clinic in Germany and they present themselves well and appear to have an excellent expertise in treating Lyme and attend / host ILADS conferences. I’m almost certain I’ll take steps to make an appointment with them but was looking to see if I can find feedback from actual patients as it’s quite an investment to go with them in terms of both time and money.
I was curious to know how people felt about them and what people’s experiences are (couldn’t find anything recently on the forum).
I’m also looking at doctors in the US and curious to know if people have chosen between or two or have had experiences with both to compare.
Many thanks and I look forward to hearing from you.
Ade
Good for you for plowing ahead and working to get appropriate treatment!
We have had some posters here in the past (a couple of years ago) from the UK and Scandinavia, but haven't heard from them for a while. One of them seemed to have a somewhat progressive-thinking MD, but not sure from what was said exactly how far beyond the NHS boundaries the doc was willing to go. Interestingly, I have, in the past when I was digging through medical journals online, found some thoughtful publishing about Lyme coming out of Scandinavia.
I just looked up the Augsburg center's website that you mention, and I was favorably impressed. They say all the right things, meaning they seem to view Lyme from the ILADS orientation. In your situation, I would certainly consider it, tho I don't know what your other options might be. That they are ILADS-oriented is excellent, in my view (but I am not medically trained). I liked their flexibility in being willing to treat for a short time or a longer time, depending on what the patient is comfortable with ... the US Lyme docs I have read about often have a fixed way of treating that is applied to what seems like all their patients; the Augsburgers sound quite flexible, which is good to hear. I don't believe we have had anyone post here who was treated in Germany, tho you could try the 'search' box at the top of the page and enter
lyme germany
or something similar to see what you get, and see if they have commented on their experience at the Augsburg Center.
It is possible that there are ILADS-leaning MDs in the UK but they stay very very quiet to avoid trouble with the NHS. Same thing seems to happen in Canada, and also in some states in the US. You could try looking at the ILADS website and search there for UK or England, and I think there is also a referral function on the website that you fill in a location for and they will answer you.
I also just did an online search for
ilads england
and found some interesting things. Many docs don't want the notoriety of being a Lyme specialist, so they are discreet but findable.
Sorry to ramble here, got interrupted several times.
Let us know what you decide and how you do, okay? Updates always gratefully accepted, even if there's not huge news. Take care --
We have had some posters here in the past (a couple of years ago) from the UK and Scandinavia, but haven't heard from them for a while. One of them seemed to have a somewhat progressive-thinking MD, but not sure from what was said exactly how far beyond the NHS boundaries the doc was willing to go. Interestingly, I have, in the past when I was digging through medical journals online, found some thoughtful publishing about Lyme coming out of Scandinavia.
I just looked up the Augsburg center's website that you mention, and I was favorably impressed. They say all the right things, meaning they seem to view Lyme from the ILADS orientation. In your situation, I would certainly consider it, tho I don't know what your other options might be. That they are ILADS-oriented is excellent, in my view (but I am not medically trained). I liked their flexibility in being willing to treat for a short time or a longer time, depending on what the patient is comfortable with ... the US Lyme docs I have read about often have a fixed way of treating that is applied to what seems like all their patients; the Augsburgers sound quite flexible, which is good to hear. I don't believe we have had anyone post here who was treated in Germany, tho you could try the 'search' box at the top of the page and enter
lyme germany
or something similar to see what you get, and see if they have commented on their experience at the Augsburg Center.
It is possible that there are ILADS-leaning MDs in the UK but they stay very very quiet to avoid trouble with the NHS. Same thing seems to happen in Canada, and also in some states in the US. You could try looking at the ILADS website and search there for UK or England, and I think there is also a referral function on the website that you fill in a location for and they will answer you.
I also just did an online search for
ilads england
and found some interesting things. Many docs don't want the notoriety of being a Lyme specialist, so they are discreet but findable.
Sorry to ramble here, got interrupted several times.
Let us know what you decide and how you do, okay? Updates always gratefully accepted, even if there's not huge news. Take care --
Hi and welcome,,, I actually do not have alot to offer you as far as which doctor, to see. I just wanted to say hello and hope to see you stick around to share your story,,, good luck to you and I hope you find a great doc!!
Pam :)
Pam :)
PS if not mentioned above, I found the LymeNetEurope website just today and was quite impressed.
Hi all,
Sorry for the delay, many thanks for your positive responses - most appreciated!
I've heard of some good testimonials about the BAC, as well as others from people who ultimately went to the US (which I'm quite tempted too).
I've been with a specialist hospital in the UK who has a Dr that trained with ILADS drs in in the US. They have managed to help many others but unfortunately I haven't been so lucky in the few years i've been with them. My Lyme doctor has also recently announced she'll be moving australia so from April onwards I won't have a LLMD in the UK.
The BAC definitely seems to be the leading, ILADS orientated place in Europe and I've known of one or two people from the UK who's Dr have referred them there.
It's tricky to find people with specific experiences from there though.
Euro Lyme (in Yahoo) and LymeEurope are very good sites.
No worries on the rambling jackie, better to ramble than not if you ask me!
Many thanks for all your kind wishes and I'll keep you posted,
Thanks
Adey
Sorry for the delay, many thanks for your positive responses - most appreciated!
I've heard of some good testimonials about the BAC, as well as others from people who ultimately went to the US (which I'm quite tempted too).
I've been with a specialist hospital in the UK who has a Dr that trained with ILADS drs in in the US. They have managed to help many others but unfortunately I haven't been so lucky in the few years i've been with them. My Lyme doctor has also recently announced she'll be moving australia so from April onwards I won't have a LLMD in the UK.
The BAC definitely seems to be the leading, ILADS orientated place in Europe and I've known of one or two people from the UK who's Dr have referred them there.
It's tricky to find people with specific experiences from there though.
Euro Lyme (in Yahoo) and LymeEurope are very good sites.
No worries on the rambling jackie, better to ramble than not if you ask me!
Many thanks for all your kind wishes and I'll keep you posted,
Thanks
Adey
Please tell your Lyme doc that Australia needs Lyme knowledgeable doctors! Lyme is emerging there as well, although the Government seems to still be pretending it isn't.
(I believe I got Lyme and Bartonella there, but I'll never be able to prove it!)
(I believe I got Lyme and Bartonella there, but I'll never be able to prove it!)
Adey, I hope this message finds you doing well.
I am in a similar position to the one you were in at the beginning of last year. I live in London and am currently looking for a LLMD outside of the UK. I've been considering the Borreliose Centrum in Augsburg, as well as a Californian doctor, who's been treating a friend with Lyme disease.
Did you opt for Germany or the US in the end? And would you recommend the practitioner who treated you?
Many thanks for any help you can provide.
jx28
I am in a similar position to the one you were in at the beginning of last year. I live in London and am currently looking for a LLMD outside of the UK. I've been considering the Borreliose Centrum in Augsburg, as well as a Californian doctor, who's been treating a friend with Lyme disease.
Did you opt for Germany or the US in the end? And would you recommend the practitioner who treated you?
Many thanks for any help you can provide.
jx28
Hey what hospital is it ? Have you looked at 'the well one clinic ' in hull ?
I've been with the BCA clinic for over 3 years and they are stil treating me and my son and also a friend's son here in Sicily, and another friend in Norway. We all find them outstandingly good.
My Italian friends have seen to leading experts in italy, who told them in so many words that the best docs they can find in Europe are the BCA.
My Norwegian friend and I went to them after bad experiences with a so called expert in Belgium.
The BCA are on the same level as the top docs in America, but it will probably work out cheaper because of travelling costs. Also, they have more experience with the 3 European strains of borrelia and the typical co-infections. Dr. N there knows the distribution throughout Britain and Europe of each of the lyme coinfections like bartonella, babesia etc and which strain of lyme you're likely to have depending where you live/got bitten.
He's also equally knowledgeable on using prescription drugs and herbs and normally gives patients a mix of both, which is the best way to go adn as far as I know, not all ILADS doctors have that broad/balanced approach.
BTW all the support staff and nurses in the BCA are extemely nice, you really feel cared for and looked after. I remember one time I felt cold and the nurse took off her own cardigan and gave it to me to wear all day.
My Italian friends have seen to leading experts in italy, who told them in so many words that the best docs they can find in Europe are the BCA.
My Norwegian friend and I went to them after bad experiences with a so called expert in Belgium.
The BCA are on the same level as the top docs in America, but it will probably work out cheaper because of travelling costs. Also, they have more experience with the 3 European strains of borrelia and the typical co-infections. Dr. N there knows the distribution throughout Britain and Europe of each of the lyme coinfections like bartonella, babesia etc and which strain of lyme you're likely to have depending where you live/got bitten.
He's also equally knowledgeable on using prescription drugs and herbs and normally gives patients a mix of both, which is the best way to go adn as far as I know, not all ILADS doctors have that broad/balanced approach.
BTW all the support staff and nurses in the BCA are extemely nice, you really feel cared for and looked after. I remember one time I felt cold and the nurse took off her own cardigan and gave it to me to wear all day.
Oh good grien!
I've just realised this thread is a year old. Why do ancient threads keep getting bumped up when they're no longer relevant? This is getting really irritating.
I've just realised this thread is a year old. Why do ancient threads keep getting bumped up when they're no longer relevant? This is getting really irritating.
The old threads pop up because MedHelp (to their credit) does not just wipe the old tapes clean every couple of months. I often find old posts with interesting information and ideas going back several years.
Lyme being a long battle, I find the perspective helpful. I've been posting here for five years now, and I sometimes run across even my own old posts that remind me of something I had forgotten.
About why newbies to the site respond to ancient threads here, I think it's because they have found a topic (or been brought here by a search engine that reaches back into the old posts here) that is on point to their concerns -- and the newby may not realize it's a very old post or may not care. An old book can be as instructive as a new book, I think.
Because posting a new question to a very old thread sometimes doesn't get a response (it is indeed tedious to page through a long post), I will respond with a suggestion that the newby reframe and post the current question as a new thread. I think newbies may be hesitate to start a new thread, not quite knowing how all this works. I know I felt that way.
And the final reason: newbies with Lyme aren't thinking very clearly. Been there myself.
--------------------------------------------------------------
If you've read this far, I have something for you I found last night about your bleeding issues. If you will google -- lyme thrombocytopenia -- you will find much interesting material on the multiple interactions within the body that affect platelet count and function.
Some years ago, a friend's small child got ITP (idiopathic thrombocytopenia, meaning origin unknown) and so I have some (now out of date) familiarity with the topic. There are multiple and sometimes interacting causes, many of which (like Lyme) confuse the medical profession, so reading up on it is probably a good idea. Piling Lyme on top of thombocytopenia just maximizes the confusion, and there does appear from the brief reading I did some interaction between the two conditions.
Lyme being a long battle, I find the perspective helpful. I've been posting here for five years now, and I sometimes run across even my own old posts that remind me of something I had forgotten.
About why newbies to the site respond to ancient threads here, I think it's because they have found a topic (or been brought here by a search engine that reaches back into the old posts here) that is on point to their concerns -- and the newby may not realize it's a very old post or may not care. An old book can be as instructive as a new book, I think.
Because posting a new question to a very old thread sometimes doesn't get a response (it is indeed tedious to page through a long post), I will respond with a suggestion that the newby reframe and post the current question as a new thread. I think newbies may be hesitate to start a new thread, not quite knowing how all this works. I know I felt that way.
And the final reason: newbies with Lyme aren't thinking very clearly. Been there myself.
--------------------------------------------------------------
If you've read this far, I have something for you I found last night about your bleeding issues. If you will google -- lyme thrombocytopenia -- you will find much interesting material on the multiple interactions within the body that affect platelet count and function.
Some years ago, a friend's small child got ITP (idiopathic thrombocytopenia, meaning origin unknown) and so I have some (now out of date) familiarity with the topic. There are multiple and sometimes interacting causes, many of which (like Lyme) confuse the medical profession, so reading up on it is probably a good idea. Piling Lyme on top of thombocytopenia just maximizes the confusion, and there does appear from the brief reading I did some interaction between the two conditions.
... and one more thing I just recalled from my earlier encounter with thrombocytopenia -- if the docs can't find a cause for it, they may characterize it as not idiopathic, but instead as *immune* thrombocytopenia, for which the usual treatment a few years ago was ... steroids. To suppress a supposedly overactive immune system that was mistakenly gobbling up platelets.
And steroids in Lyme are of course contraindicated, to my understanding.
And steroids in Lyme are of course contraindicated, to my understanding.
Youvegottobekidding,
I just wanted to let you know that I found your comments about BCA to be really useful - thank you. As a newby, I did continue with this old thread only recently, and so your answer is relevant to me now.
However, taking JackieCalifornia's advice, I have now also posted my own questions in the Lyme disease and MS fora. If you are interested, please search for 'Has anyone else been diagnosed with both Lyme disease and Multiple Sclerosis?' in the former forum. I switched the order of the conditions around in the latter forum, so it reads 'Has anyone been diagnosed with both Multiple Sclerosis and Lyme disease?' there.)
I just wanted to let you know that I found your comments about BCA to be really useful - thank you. As a newby, I did continue with this old thread only recently, and so your answer is relevant to me now.
However, taking JackieCalifornia's advice, I have now also posted my own questions in the Lyme disease and MS fora. If you are interested, please search for 'Has anyone else been diagnosed with both Lyme disease and Multiple Sclerosis?' in the former forum. I switched the order of the conditions around in the latter forum, so it reads 'Has anyone been diagnosed with both Multiple Sclerosis and Lyme disease?' there.)
Hi!
I'm glad the info was useful to you!
Good to know I didn't waste my time!
I'll have a look at your new post. :)
I'm glad the info was useful to you!
Good to know I didn't waste my time!
I'll have a look at your new post. :)
In case it's of interest to anyone, I emailed a German doctor who carries out blood tests at Infectolab, part of the Borreliose Centrum Augsburg (BCA), with the following question:
When you test for Lyme disease at your lab, do you look for both European strains as well as North American ones?
He responded as follows:
Yes, we look for all pathogen strains. So US patients and Igenex send me also samples for doing tests (and many are positive there!)
When you test for Lyme disease at your lab, do you look for both European strains as well as North American ones?
He responded as follows:
Yes, we look for all pathogen strains. So US patients and Igenex send me also samples for doing tests (and many are positive there!)
Hi Blacksea!
I think the above chain might be useful to you.
I'm currently researching the German clinic myself, & Youvegottobekidding has been really helpful in this regard. Youvegottobekidding has also noticed improvement as a result of treatment there.
It seems the BCA tailors everyone's treatment to their individual needs, & they are able to help with Herxing as well.
Of course, distance is a factor for you &, as was said in your chain, there are good LLMDs in the US too.
Hope that helps!
James
I think the above chain might be useful to you.
I'm currently researching the German clinic myself, & Youvegottobekidding has been really helpful in this regard. Youvegottobekidding has also noticed improvement as a result of treatment there.
It seems the BCA tailors everyone's treatment to their individual needs, & they are able to help with Herxing as well.
Of course, distance is a factor for you &, as was said in your chain, there are good LLMDs in the US too.
Hope that helps!
James
Having spoken with one of the doctors in Augsburg, I thought it might be of interest to people to know that the BCA's normal approach - what he called their 'working principle' - is to meet for a first appointment to discuss symptoms and former reports for 1-2 hours. The doctor can also carry out any outstanding tests after this consultation.
Treatment courses are decided upon and discussed with the patient at a second appointment two weeks later, when test results are ready. At this time, the patient is prepared for treatment (ECG, liver, kidney, ultrasound).
This second appointment normally takes place on a Monday, and the patient starts treatment the same or the next day.
Treatment courses are decided upon and discussed with the patient at a second appointment two weeks later, when test results are ready. At this time, the patient is prepared for treatment (ECG, liver, kidney, ultrasound).
This second appointment normally takes place on a Monday, and the patient starts treatment the same or the next day.
How reassuringly ... Teutonic. :)
Seriously, that sounds very reasonable and organized.
Glad to hear you are making progress in figuring out the order of battle.
Keep us posted!
Seriously, that sounds very reasonable and organized.
Glad to hear you are making progress in figuring out the order of battle.
Keep us posted!
Just to let you know, that's the usual process for German residents.
If you're going from abroad, you can send the blood by courier (you have to get them to post you special test tubes for storage of it) and arrange to go when the results are already in, which is what I did.
That way you don't have to fly twice or wait about in Germany for 2 weeks doing nothing.
Then it goes as follows,
initial consultation on a Thursday (lasted 2 hours for me) during which the doc listens to your entire life story and answers literally any question you care to ask him.
Then the follow up one is on Friday, where he lays out the treatment options he recommends and you decide together what you'll do, and ask him any question you want (lasted 2.5 hours for me).
You have those tests you mentioned for the rest of Friday then start treatment at 8am sharp on Monday morning, don't dare be late because they're German and will not find it funny!
If you're going from abroad, you can send the blood by courier (you have to get them to post you special test tubes for storage of it) and arrange to go when the results are already in, which is what I did.
That way you don't have to fly twice or wait about in Germany for 2 weeks doing nothing.
Then it goes as follows,
initial consultation on a Thursday (lasted 2 hours for me) during which the doc listens to your entire life story and answers literally any question you care to ask him.
Then the follow up one is on Friday, where he lays out the treatment options he recommends and you decide together what you'll do, and ask him any question you want (lasted 2.5 hours for me).
You have those tests you mentioned for the rest of Friday then start treatment at 8am sharp on Monday morning, don't dare be late because they're German and will not find it funny!
Hello,
First time here. I am in Western Australia and contemplating BCA....long haul I know. Just wondering what you did re accommodation and what you could recommend in that department? Interested in minimising costs but not to the detriment of comfort, peace and safety. Thanks!
First time here. I am in Western Australia and contemplating BCA....long haul I know. Just wondering what you did re accommodation and what you could recommend in that department? Interested in minimising costs but not to the detriment of comfort, peace and safety. Thanks!
Welcome to MedHelp --
You posted at the end of a long, year-old chain of messages, and someone might not read it now and see your question.
Two suggestions, if you want to try them:
-- start a new thread by clicking on the brownish-orange 'post a question' button near the top of this webpage, and/or
-- click on 'inbox' in the upper right corner of this webpage, and then click 'compose' to send a private message (PM) to the person you directed your question to. The advantage to a PM is that it goes straight to the email account of the person you are writing to (rather than just being posted here on the 'wall') and if she's not checking in often, she might see it sooner, but youvegottobekidding is here fairly regularly, so might not be an issue. You have to type in the full screen name of the person you are sending a PM to, however, so be sure you have it written down or fully in mind before you start the PM.
All that said, you might get a quick response from the post you already made -- just a thought. Best wishes on your trip! As long as you are going half way around the world, have you considered the US?
You posted at the end of a long, year-old chain of messages, and someone might not read it now and see your question.
Two suggestions, if you want to try them:
-- start a new thread by clicking on the brownish-orange 'post a question' button near the top of this webpage, and/or
-- click on 'inbox' in the upper right corner of this webpage, and then click 'compose' to send a private message (PM) to the person you directed your question to. The advantage to a PM is that it goes straight to the email account of the person you are writing to (rather than just being posted here on the 'wall') and if she's not checking in often, she might see it sooner, but youvegottobekidding is here fairly regularly, so might not be an issue. You have to type in the full screen name of the person you are sending a PM to, however, so be sure you have it written down or fully in mind before you start the PM.
All that said, you might get a quick response from the post you already made -- just a thought. Best wishes on your trip! As long as you are going half way around the world, have you considered the US?
Hi,
Sorry to report that the BCA is no longer accepting new patients for the rest of this year. They're too overstretched with the patients they have.
So DK Blue, especialy considering the long haul flight you'll have, I think you need to look at options in the US.
Sorry to report that the BCA is no longer accepting new patients for the rest of this year. They're too overstretched with the patients they have.
So DK Blue, especialy considering the long haul flight you'll have, I think you need to look at options in the US.
[You ARE quick!]
Hope you're doing all right, and your family as well. Sending you good thoughts --
Hope you're doing all right, and your family as well. Sending you good thoughts --
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