BCA Clinic in Germany VS US Doctorss

[adey124]

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

[KAR38]

I could not afford the BCA Clinic but it seemed highly specialized and they give individual attention and care based on the packet I obtained.

There are good Lyme doctors in Germany who are independent and not affiliated with that particular clinic that treat for less cost.

There is or was a Borreliose society and some LLMD's are listed online.

[KAR38]

I could not afford the BCA Clinic but it seemed highly specialized and they give individual attention and care based on the packet I obtained.

There are good Lyme doctors in Germany who are independent and not affiliated with that particular clinic that treat for less cost.

There is or was a Borreliose society and some LLMD's are listed online.

[mpilar]

Hello,

I would like you give me your opinion. I have all the symptoms of Lyme disease and have been diagnositacada of chronic fatigue syndrome. I did the Elispot Revised BCA Germany, but only came out positive C41 and CD57 in 110, below the minimum, but not too low by doctors in Spain, so I have been told that I have Borrelia in my body .
I read that the test to detect this spirochete are not 100% reliable for many reasons. Do you know any similar case and finally has Lyme and has been treated and improved?
Thank you very much.
A greeting.

[AnnieMay2]

Thanks for your comments. I've just been diagnosed with lyme and are in terms of moving back to my home country Germany soon, anyway. I'm feeling I will make a good choice looking for help at BCA. They obviously offer compact treatment incl. antibiotics and/or herbs. I will go there for help and healing I think.

[JackieCalifornia]

Welcome --

The person you posted to above (youvegottobekidding) has not posted here for a while, but your message may be automatically forwarded from MedHelp to youvegot.  If her email address registered with MedHelp has not changed, then she would know of your message and may respond.

May I suggest that you also start a new message thread of your own, because it will have more prominence on this site.  Title it something like "Need Lyme specialist in Belgium or nearby".  You might also say how far you can travel to see a Lyme expert.

I believe that   ---   ILADS  [dot]  org   ---   has a referral service their website and may be able to suggest Lyme specialists near you.  There are also groups in Europe that may be helpful, such as EuroLyme.  I am not personally familiar with any Lyme websites based in Europe, but there are several.  

Let us know how we can help -- Best wishes to you and your famiily --

[Mietme]

Hello, just found your post from some time ago.
Since we are looking for an expert on Lyme in Belgium. Can you tell from which "so called" expert you were not satisfied with and for what reason ?

Or anybody else who can give info on Lyme experts in Belgium

Happy to hear.
Mietme

[JackieCalifornia]

Willkommen, Kameraden!  

I am sorry to hear you are ill, but am glad that you have a diagnosis.  Now to move on to treatment!

I do not know of anyone here who has been treated at Augsburg, and if you live in the US, it is not necessary to travel so far away to receive treatment.  There is a disagreement among the physicians in the US about how to diagnose and treat Lyme disease (and other infections the same ticks often carry in addition to Lyme).  I just searched online for

     -- columbia sc lyme --

and there were interesting links that may lead you to a good MD not far from you.  I would suggest that you try a physician closer to your home in the US rather than try to be treated in Augsburg, unless you are willing to move to Germany (or travel there regularly) for up to a year or more for treatment.  If you are more comfortable being treated in Germany, then that is a good reason, if family and financial concerns are not a problem.  Augsburg certainly has a good reputation.  You can email Augsburg and ask if they take your (US) insurance.  

Another aspect to be aware of is that there are different strains (or variant types) of Lyme, and a European MD may or may not be familiar with the type of Lyme and any co-infections you may have gotten in South Carolina.

You say above:  "I found that  Lyme Literate Dr.'s do not accept insurance."  Some may accept insurance, but generally speaking, many LLMDs will bill you, you pay them, and then you send your receipt to your insurance company for reimbursement.  That is what my LLMD did, and others here have had the same experience.  It seems to work well and saves the LLMD from hiring many billing clerks to deal with the insurance companies.

You say, "First it takes over ten years to get diagnosed then it is chronic and the medical establishment insists there is no chronic Lyme."

Many of us have been long-infected before beginning treatment, but Lyme and its co-infections are still treatable.  

There are Lyme specialists in many places, but the LLMDs sometimes do not advertise, because other MDs and medical societies and boards may try to cause trouble for the LLMDs.  It is different from state to state, depending on each state's medical hierarchy and structure.

About payment:  I do not know what insurance may pay for you if you are treated in Germany; you may wish to explore that aspect before deciding where to be treated.  In the US, there are some charities that can assist those in need who cannot afford Lyme treatment.  I just searched online for

    -- lyme charity --

and there are at least two organizations in the UK, the "Lyme Trust" and "Lyme Disease Action", both of which are registered charities.  

In the US, "LymeLight Foundation" and "Lyme Disease Association.org" can assist those in financial need for diagnosis and treatment.

Take heart!  There are many sources of support, both financial and social, for those dealing with Lyme.  Let us know how we can help.  We have all been through what you are dealing with.

[Gerbunny]

A blood test came back positive for lyme, I know marker 39 is only by  borreolose bacterium. But also came back as having a autoimmune disease as we'll.
I have Diabetes type 2 and had thyroid cancer with half my thyroid removed. Have not seen an infectious disease Dr. yet.
Last few years have been agony CFS, IBS, brain fog, memory loss and 500 other symptoms. All I got was RX's for depression, wow something that makes you more into a zombie than you already are.
Dr's only see middle aged overweight person and send her to a shrink because it is all in her head.
So what now?
I am from Germany but have not lived there for over 26 years. How much does it cost to go to the clinic in Augsburg? Do they take American Health insurance?
I found that  Lyme Literate Dr.'s do not accept insurance. So that makes it impossible to get the treatment you need if you have no money. My husband has left me after 26 years with nothing.
First it takes over ten years to get diagnosed then it is chronic and the medical establishment insists there is no chronic Lyme.
I was informed that in South Carolina there is no got Lyme Doctor. I am great full for any information at all.
Thanks

[JackieCalifornia]

Okay, you should have a message forwarded via MedHelp now sitting in your personal email inbox.  I do not have your email address, nor do you have mine, and we can communicate privately through this MedHelp website.  Works fine, just takes a little getting used to.

Post here if you are having trouble figuring it out, and we'll work at it together.  No worries.

[JackieCalifornia]

I will send you a private message with the name of my Lyme doc in Northern California.  The message will be sent through this Medhelp system, but will pop up in your private email, so that we are communicating directly but via a forwarded message.  Sounds confusing, but it works fine.

We do NOT post the names of Lyme docs here in public, to avoid getting them in trouble with state/local medical boards who limit treatment to a few weeks of doxycycline and nothing more.  

[timpeg]

Who is your friend seeing in California?  My husband has lymes and we can not find a doctor and we live in Northern California.

[Ricobord]

There have been a few comments on this forum about disappointment with the Breakspear clinic.  Perhaps that has changed recently...  It seems that physicians willing to treat Lyme outside the official guidelines in the U.K. are few and far between.  If the Breakspear clinic is helpful, it would certainly be more cost effective than travelling.  But if they're not helpful, then they're a waste of precious resources.

[Sassanid]

Has anyone tried Breakspear Clinic in Hemel Hempstead?
Why the US or Germany when there is a reputable Lyme treatment centre right here in the UK?

[kathloj]

I suspect that I have Lyme despite a Neg blot test from Igenex. I find these "old" posts extremely helpful and they've actually reinforced my belief as I've found more symptoms listed on here that I didn't consider part of  Lyme. So am adding to my symptoms list, hoping to see LLMD in the near future. :)
Good luck and hope you get proper treatment and results.

[001ken]

full proof treatment !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!6 weeks infusions morning and evening,,,,,,,ROCEPHIN!!!!!!!!!

[cave76]

Thanks for the feedback. Can you tell us exactly what it was that made you unhappy with them?

[Aussie_SusieQ]

Well I went to BCA clinic and cannot recommend it. Many unhappy clients and they do not repay money they have in credit. Communication very poor.

[JackieCalifornia]

Greetings -- not sure why your post from 2 months ago popped up in the message stream now (??!!) but DKBlue doesn't seem to have posted here for quite a while.  You can send a private message (PM) to him/her by hovering the mouse over DKBlue's name in the 'To:' line in your message above, and you will see a 'send message' icon.  If you click that, it will open a message box that you can send a private message to DKBlue that will be automatically forwarded to his/her email registered with this site.  Then s/he will know of your message and can come here to read it.  Sounds complicated, but really it's not toooo bad.  Best wishes --

[AussieSusieQ50]

Hi DK Blue,
I'm in NSW and looking at going to the clinic also in Germany. I don't think they are booked out as ive been talking to them. Are you still interested in going as we could perhaps travel together.

[cave76]

I used to get Extencilline from Farmamondo in (Switzer. or France?) for the equivalent of bicillin LA. Much cheaper  --- like WAY cheaper! They're a reputable pharmacy and I did need an rx for it.

But that's changed now-----I don't know when or why but it probably has something to do with the changing 'climate' of drug prescriptions, perhaps the red tape needed now (post 9-11) didn't make it cost effective.

I wonder if that's what BCA is facing. Just a thought, nothing more.

[jx28]

Thanks for your message, and for inserting the link.

Said llink is to a radio show where Dr Armin Schwarzbach discusses the testing he uses & much else besides. For example, the interplay between Lyme disease and MS is discussed at various points. It's worth a listen even if you're not particularly focused on MS though. Dr Alan MacDonald, of 'Under Our Skin', makes an appearance as a guest caller. I'm pleased to report he sounds in good health himself.

As some of you already know, my relationship with the BCA ultimately came to naught - inter alia, as I didn't want to move to Germany, they could only send me the necessary, longer-term drugs if my UK GP prescribed them. My GP refused, and so, after having also researched a number of other options closer to home in vain, I turned to the US, as the US doc recommended by my friend can send the drugs back to me in the UK directly.

Even if the BCA could have sent me the drugs in the UK, I'm not sure I would have used them for other reasons - feel free to PM me, if you're interested. That said, their affiliate lab - Infectolab - does seem good, & Armin, as chief lab doc there, seems to know what he's talking about, as evidenced on the radio show.

[cave76]

I don't know if you're aware that some people here won't follow links (they find them hard to do.)

To help those ill people perhaps a recap of what Dr. Schwatzbach said might be in order.

You also brought this topic up in another thread here---- in which you explained it a bit more and I replied,.

Here is that link----
http://www.medhelp.org/posts/Lyme-Disease/Back-surgery/show/1945987

(apologies to those that can't or won't navigate links)

[jx28]

Take a look at this talk on the radio with Dr Armin Schwarzbach, lab doctor at Infectolab, part of the BCA:

http://www.blogtalkradio.com/in-short-order/2013/05/12/in-short-order--dr-armin-schwarzbach

Enjoy!

[JackieCalifornia]

[You ARE quick!]

Hope you're doing all right, and your family as well.  Sending you good thoughts --