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.
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
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
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!!
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,
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?
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.
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.
... 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.
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.)
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.
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!
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!
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?
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.
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.
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.
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.
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 --
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.
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.
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.
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.
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.
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.
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 --
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.
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