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Which lab tests for Lyme are certain and also available in Europe/Germany?
Hello!
I live in Germany. I'm 30 years old and suffer from many different ailments, most of the time the doctors either find no explanation or they cannot help me. (visual disorders, visual snow, cracking joints, pain in joints, depression, anxiety, overall feeling very sick, receeding gum line, low testosterone, chronic skin eczemas, brain fog)
Often times when people have many different problems Lyme comes up. I have been to a rheumatologist years ago because of pain and cracking in multiple joints and he tested for Lyme but he only tested for IgE or something like that. I read that those IG test are not reliable. Now I worry what if I have chronic Lyme? I cannot remember ever having been biten by anything but who knows.
But I also don't know which tests are 100% reliable. Are there even 100% reliable tests?
Like I said I have a lot of symptoms which also fit into the very long list of Lyme symptoms. This also makes it hard to really tell if I might have it.
I also saw there is a clinic in Germany called BCA but this clinic is far away from me and I don't think that my insurance would cover the costs for these tests and treatments and I cannot afford paying a lot of money without even knowing if I have it and if it will help.
I also read that the antiobiotics which you have to take for years are very expensive. What kind of antibiotics do people get against Lyme? Doxycycline? I took this years ago for a few months against skin problems.
I feel really not good now where I read about Lyme. Now I worry even more and ordinary doctors can't really help me very much. My intern said if the IG tests are negative then he is usually satisfied with that. He also could not tell me if there are Lyme specialists in my region. I live near Heidelberg.
I live in Germany. I'm 30 years old and suffer from many different ailments, most of the time the doctors either find no explanation or they cannot help me. (visual disorders, visual snow, cracking joints, pain in joints, depression, anxiety, overall feeling very sick, receeding gum line, low testosterone, chronic skin eczemas, brain fog)
Often times when people have many different problems Lyme comes up. I have been to a rheumatologist years ago because of pain and cracking in multiple joints and he tested for Lyme but he only tested for IgE or something like that. I read that those IG test are not reliable. Now I worry what if I have chronic Lyme? I cannot remember ever having been biten by anything but who knows.
But I also don't know which tests are 100% reliable. Are there even 100% reliable tests?
Like I said I have a lot of symptoms which also fit into the very long list of Lyme symptoms. This also makes it hard to really tell if I might have it.
I also saw there is a clinic in Germany called BCA but this clinic is far away from me and I don't think that my insurance would cover the costs for these tests and treatments and I cannot afford paying a lot of money without even knowing if I have it and if it will help.
I also read that the antiobiotics which you have to take for years are very expensive. What kind of antibiotics do people get against Lyme? Doxycycline? I took this years ago for a few months against skin problems.
I feel really not good now where I read about Lyme. Now I worry even more and ordinary doctors can't really help me very much. My intern said if the IG tests are negative then he is usually satisfied with that. He also could not tell me if there are Lyme specialists in my region. I live near Heidelberg.
I believe that the lab the BCA uses is InfectoLab. I've heard they're excellent.
There's a doctor in Australia who treats Lyme and before they had any specialized testing there, he was using Mikrogen. Here's their English website.
http://www.mikrogen.de/english/deutschland/products/testing-systems/testsystem/borrelia-igg-1.html
The standard commercial lab tests for Lyme Disease are usually based on the CDC interpretation, which was developed in New England using patients with early Lyme Disease and an EM rash to be sure they actually had Lyme.
Surprisingly enough, last year, a study was done in the U.S. to test the accuracy of the Western Blot interpretation against European strains. Only about half tested positive correctly. If commercial test kits in Europe are only looking at the CDC bands, they're missing at least half of actual cases.
But since many Lyme patients and advocates say that the CDC interpretation misses up to half of actual cases here in the U.S., the accuracy rate in using it for European cases could be much less than half. While this info might help you understand how you could test false negative, it might not be enough to convince your doctor to order up tests at one of these two specialty labs. Do you think he'd be willing to order them if you offered to pay for them yourself? It would be worth it if a positive result convinces him to start treatment for you.
There's a doctor in Australia who treats Lyme and before they had any specialized testing there, he was using Mikrogen. Here's their English website.
http://www.mikrogen.de/english/deutschland/products/testing-systems/testsystem/borrelia-igg-1.html
The standard commercial lab tests for Lyme Disease are usually based on the CDC interpretation, which was developed in New England using patients with early Lyme Disease and an EM rash to be sure they actually had Lyme.
Surprisingly enough, last year, a study was done in the U.S. to test the accuracy of the Western Blot interpretation against European strains. Only about half tested positive correctly. If commercial test kits in Europe are only looking at the CDC bands, they're missing at least half of actual cases.
But since many Lyme patients and advocates say that the CDC interpretation misses up to half of actual cases here in the U.S., the accuracy rate in using it for European cases could be much less than half. While this info might help you understand how you could test false negative, it might not be enough to convince your doctor to order up tests at one of these two specialty labs. Do you think he'd be willing to order them if you offered to pay for them yourself? It would be worth it if a positive result convinces him to start treatment for you.
I'll PM you with the name of a forum in the UK which is pretty good. Many Germans use that site.
There's also another one in the Netherlands where many people speak German.
There's also another one in the Netherlands where many people speak German.
Willkommen! Your questions are good ones.
I would do as you are, exploring the possibility of Lyme and the other infections the Lyme ticks can carry ('co-infections'). Too many doctors everywhere do not yet recognize the seriousness of Lyme and how far it has spread throughout many areas of the world.
BCA is the first German clinic that comes to mind, but there may be others that are simply quiet. We have some members here who know Europe and may also respond with other suggestions.
The main U.S. voluntary group for doctors who understand Lyme is ILADS, the International Lyme and Associated Disease Society. They can send you names of ILADS member-doctors in your area if you email to them, tell them where you are, and how far you can travel. The email address is:
contact [at] ILADS [dot] org
Their website, at ILADS [dot] org, has good information about Lyme, if you are interested in reading more.
We have some members on this forum who are familiar with the Lyme resources in Europe, and you may hear from them as well. BCA appears to be a few hours from your location, but it may be the closest.
You mention having consulted with a rheumatologist. Generally speaking, rheumatologists and infectious disease (ID) MDs are too often the most opposed to seeing Lyme as it is, instead of as it was defined years ago before much was known. One normally seeks out an MD in a field that seems a logical place for treatment of a particular disease (such as an ID doctor for infectious disease), but in Lyme, that is not always so. As well, there are some doctors who have rather odd ideas about Lyme and its co-infections, and you will have to use your judgment whether to consult with them. It sometimes takes a few tries to find the best doctor for you, but it is worth the effort.
It is understandable that you are anxious about all of this, but also know that anxiety is a symptom of Lyme, as a direct effect of the infection. You might want to try magnesium (Mg) supplements, because Lyme bacteria use up Mg, resulting in symptoms similar to what you describe. Any variety of Mg ending in "-ate", such as Mg citrate, malate, aspartate, orotate etc., are said to be the most absorbable; I prefer the capsules to the large, solid pills, as being easier to swallow and digest.
You are correct about the standard tests for Lyme being inaccurate too often. Knowledgeable Lyme specialists (sometimes among patients, they are called, for ease of reference, LLMDs, or 'Lyme-literate medical doctors) do not rely on only the Western blot and ELISA tests that you may have been given, because those tests measure the immune system reaction to a Lyme infection. This measurement is too often inaccurate, because Lyme suppresses the immune system reaction, and also because after a period of time, the immune system stops reacting to the presence of the Lyme bacteria. The result: negative tests but with a persisting infection.
LLMDs often use another type of test, called PCR, or polymerase chain reaction, which looks not for your immune system reaction, but instead for direct evidence of Lyme bacteria DNA. NonLLMDs do not often use the PCR test, because the nonLLMDs are content with the Western blot and ELISA tests. Thus you are correct that the [usual] tests are too often inaccurate, and too often even a positive test is disregarded by nonLLMDs. (One MD said to me that I had a mildly positive Western blot/ELISA test, but that I 'could not possibly have Lyme' because I was not ill enough. I took that test with me to an LLMD and was successfully treated.)
(The IgG and IgM terms that your doctor used are antibodies produced by your immune system against Lyme [and other diseases]. "Ig" is the abbreviation for 'immunoglobulin". IgM is produced early in a Lyme infection, and IgG later in the infection. Most bacteria have relatively short life-cycles, and it is when reproducing that the bacterial cell wall is disrupted and most susceptible to antibiotics, so that two weeks of an appropriate antibiotic usually cover enough bacterial reproductive cycles to end the infection. Lyme, however, like tuberculosis (TB)and a few other diseases, reproduce very slowly, thus requiring longer treatment to allow enough assaults by the antibiotics. Standard treatment for TB is 18 months, and LLMDs also treat Lyme for an extended period for the same reason. My own Lyme treatment was about 9 months, but it varies.)
Another problem is that nonLLMDs do not know to look for other infections that the 'Lyme' ticks carry ~50% of the time. These infections need separate testing and often different antibiotics from Lyme.
You note concern about having 'chronic Lyme'. Lyme, whether chronic or not, receives the same treatment, unless treatment begins almost immediately after infection. (Unless treated very soon after infection, doxycycline is generally ineffective.) Don't worry. All that is needed is appropriate treatment, which includes longer treatment time as noted above, as well as the right antibiotics, which includes not only antibiotics to kill the bacteria, but also antibiotics to pierce the slimy shields (cysts) the Lyme bacteria hide in to avoid detection by the immune system. These antibiotics, such as Flagyl, are sometimes called 'cyst-busters.' NonLLMDs do not understand this.
The antibiotics used are sometimes more expensive than doxycycline, but they work when it is too late for doxy to be effective. I don't know much about the German medical structure when it comes to cost, but it was worth everything I spent and more to be well again.
Many of us never see the tick that bit us and never had a rash. That includes me and another person in my family. Not everyone gets a rash, and sometimes the rash is hidden on the scalp or mistaken for an allergy or some other, innocent bite.
At 30 years of age, you have many decades of life ahead of you, and you deserve to enjoy it. I would encourage you to do everything possible to be appropriately diagnosed and fully treated -- it can be done, and it is definitely worth the money and the trouble to have your life back. What is more important than health?
Let us know how we can help --- best wishes to you -- keep us posted --
Viele Glueckwunsche --
I would do as you are, exploring the possibility of Lyme and the other infections the Lyme ticks can carry ('co-infections'). Too many doctors everywhere do not yet recognize the seriousness of Lyme and how far it has spread throughout many areas of the world.
BCA is the first German clinic that comes to mind, but there may be others that are simply quiet. We have some members here who know Europe and may also respond with other suggestions.
The main U.S. voluntary group for doctors who understand Lyme is ILADS, the International Lyme and Associated Disease Society. They can send you names of ILADS member-doctors in your area if you email to them, tell them where you are, and how far you can travel. The email address is:
contact [at] ILADS [dot] org
Their website, at ILADS [dot] org, has good information about Lyme, if you are interested in reading more.
We have some members on this forum who are familiar with the Lyme resources in Europe, and you may hear from them as well. BCA appears to be a few hours from your location, but it may be the closest.
You mention having consulted with a rheumatologist. Generally speaking, rheumatologists and infectious disease (ID) MDs are too often the most opposed to seeing Lyme as it is, instead of as it was defined years ago before much was known. One normally seeks out an MD in a field that seems a logical place for treatment of a particular disease (such as an ID doctor for infectious disease), but in Lyme, that is not always so. As well, there are some doctors who have rather odd ideas about Lyme and its co-infections, and you will have to use your judgment whether to consult with them. It sometimes takes a few tries to find the best doctor for you, but it is worth the effort.
It is understandable that you are anxious about all of this, but also know that anxiety is a symptom of Lyme, as a direct effect of the infection. You might want to try magnesium (Mg) supplements, because Lyme bacteria use up Mg, resulting in symptoms similar to what you describe. Any variety of Mg ending in "-ate", such as Mg citrate, malate, aspartate, orotate etc., are said to be the most absorbable; I prefer the capsules to the large, solid pills, as being easier to swallow and digest.
You are correct about the standard tests for Lyme being inaccurate too often. Knowledgeable Lyme specialists (sometimes among patients, they are called, for ease of reference, LLMDs, or 'Lyme-literate medical doctors) do not rely on only the Western blot and ELISA tests that you may have been given, because those tests measure the immune system reaction to a Lyme infection. This measurement is too often inaccurate, because Lyme suppresses the immune system reaction, and also because after a period of time, the immune system stops reacting to the presence of the Lyme bacteria. The result: negative tests but with a persisting infection.
LLMDs often use another type of test, called PCR, or polymerase chain reaction, which looks not for your immune system reaction, but instead for direct evidence of Lyme bacteria DNA. NonLLMDs do not often use the PCR test, because the nonLLMDs are content with the Western blot and ELISA tests. Thus you are correct that the [usual] tests are too often inaccurate, and too often even a positive test is disregarded by nonLLMDs. (One MD said to me that I had a mildly positive Western blot/ELISA test, but that I 'could not possibly have Lyme' because I was not ill enough. I took that test with me to an LLMD and was successfully treated.)
(The IgG and IgM terms that your doctor used are antibodies produced by your immune system against Lyme [and other diseases]. "Ig" is the abbreviation for 'immunoglobulin". IgM is produced early in a Lyme infection, and IgG later in the infection. Most bacteria have relatively short life-cycles, and it is when reproducing that the bacterial cell wall is disrupted and most susceptible to antibiotics, so that two weeks of an appropriate antibiotic usually cover enough bacterial reproductive cycles to end the infection. Lyme, however, like tuberculosis (TB)and a few other diseases, reproduce very slowly, thus requiring longer treatment to allow enough assaults by the antibiotics. Standard treatment for TB is 18 months, and LLMDs also treat Lyme for an extended period for the same reason. My own Lyme treatment was about 9 months, but it varies.)
Another problem is that nonLLMDs do not know to look for other infections that the 'Lyme' ticks carry ~50% of the time. These infections need separate testing and often different antibiotics from Lyme.
You note concern about having 'chronic Lyme'. Lyme, whether chronic or not, receives the same treatment, unless treatment begins almost immediately after infection. (Unless treated very soon after infection, doxycycline is generally ineffective.) Don't worry. All that is needed is appropriate treatment, which includes longer treatment time as noted above, as well as the right antibiotics, which includes not only antibiotics to kill the bacteria, but also antibiotics to pierce the slimy shields (cysts) the Lyme bacteria hide in to avoid detection by the immune system. These antibiotics, such as Flagyl, are sometimes called 'cyst-busters.' NonLLMDs do not understand this.
The antibiotics used are sometimes more expensive than doxycycline, but they work when it is too late for doxy to be effective. I don't know much about the German medical structure when it comes to cost, but it was worth everything I spent and more to be well again.
Many of us never see the tick that bit us and never had a rash. That includes me and another person in my family. Not everyone gets a rash, and sometimes the rash is hidden on the scalp or mistaken for an allergy or some other, innocent bite.
At 30 years of age, you have many decades of life ahead of you, and you deserve to enjoy it. I would encourage you to do everything possible to be appropriately diagnosed and fully treated -- it can be done, and it is definitely worth the money and the trouble to have your life back. What is more important than health?
Let us know how we can help --- best wishes to you -- keep us posted --
Viele Glueckwunsche --
I may be moving to Germany and I was told about that clinic you mentioned. I posted the same question and that clinic was the only one I got.
Your symptoms could very well be Lyme. They sound all to familiar . The Lyme docs in the US generally use IgeneX labs which are more accurate. You could google their website to see if you could send blood to them internationally or someone else might know.
Doxy is the first antibiotic I started with but have been on tons of different medicines since I started treatment 18 mos ago.
Some people chose to go to naturopaths and do an all herb protocol.
There are others in Europe on this version that can hopefully help you more.
Keep us posted.
Your symptoms could very well be Lyme. They sound all to familiar . The Lyme docs in the US generally use IgeneX labs which are more accurate. You could google their website to see if you could send blood to them internationally or someone else might know.
Doxy is the first antibiotic I started with but have been on tons of different medicines since I started treatment 18 mos ago.
Some people chose to go to naturopaths and do an all herb protocol.
There are others in Europe on this version that can hopefully help you more.
Keep us posted.
What worries me is what if you simply do not have access to a good Lyme doctor? I read about people who had chronic Lyme and then had to take all kinds of different antibiotics. But this requires that you have a doctor who understands how all of this works. But what if you don't have such a doctor? Is then everything hopeless?
Then getting tested without having a good doctor would make no sense it would only cause more worries if it was positive.
Then getting tested without having a good doctor would make no sense it would only cause more worries if it was positive.
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