Aa
Could this be Lyme disease?
Symptoms:
-Lower legs constantly twitching
-Globus sensation in throat
-Had Guillain Barre six years ago
Symptoms started in August and are still present. I have been very sick, bedridden for Sept. and half of Oct. Whatever I have seemed to affect my entire nervous system. I am getting better very slowly. The two symptoms remain, however
Had full work up at Mayo neurology, everything, and they didn't find any neurological disease. They tested my spinal fluid for Lyme.
Also had upper endoscopy, echocardiogram, CT and additional blood tests with no positive results.
Thanks very much for your help.
-Lower legs constantly twitching
-Globus sensation in throat
-Had Guillain Barre six years ago
Symptoms started in August and are still present. I have been very sick, bedridden for Sept. and half of Oct. Whatever I have seemed to affect my entire nervous system. I am getting better very slowly. The two symptoms remain, however
Had full work up at Mayo neurology, everything, and they didn't find any neurological disease. They tested my spinal fluid for Lyme.
Also had upper endoscopy, echocardiogram, CT and additional blood tests with no positive results.
Thanks very much for your help.
Good for you -- but don't be surprised if the doc says no. NonLLMDs don't tend to think that way. Let us know what you hear back, okay?
I agree going to contact doctor and ask if we should include biofilm breaker type drug in addition to the antibiotics.
That's good to hear. When you are done with treatment, if you don't feel 100%, then I would keep pursuing additional and possibly different treatment. Lyme and its co-infections do not all respond the same to various meds, and now that you've got the bugs on the run, keep after them to avoid partial treatment, which can result in drug-resistant bacteria. Best wishes --
I also have been fighting clinically diagnosed lymes. My symptoms where tingling legs, arms, and face. Most everything was in my peripheral nervous system Went thru all the MRI test all negative. Everything checked out fine. All blood work fine. Went on antibiotics and in two weeks felt a limitless better. I'm on my second month of doxy. Getting better slowly.
Just to add to all the great information given by Jackie, your symptoms could very well be from Lyme. I had the twitching legs and throat problems. There are a number of Lyme patients that get Gullian Barr so finding an LLMD is essential. Good luck
PPS -- just rereading my hastily typed comments above, and have a few notes, which now that I've typed them, I am also going to put into a separate message thread here in case it would catch someone else's eye and maybe be helpful:
"LLMD" is what patients call MDs who have an understanding of Lyme and its common co-infections that is far more thoughtful and understanding than that of many neurologists, rheumatologists, infectious disease [ID] docs, and others who often treat Lyme patients. Lyme is an infectious disease (carried by ticks), so you'd think ID docs would have the whole thing figured out; alas, not often. The medical community as a whole has locked onto Lyme as non-serious disease that is (as said above) rare, hard to get, and easy to cure. It is however a relatively recent disease spreading rapidly through many areas, but the initial docs who studied Lyme truly were seeing a fairly 'rare' disease. Early treatment with a short course of doxycycline was a good try, but the docs who started with that treatment never kept up with progressively newer and better understanding of Lyme and what it is and how it operates.
Because modern medicine is so complex, many (even most) docs have branched out into specialty areas, so that there are docs for feet, docs for eyes, docs for digestive problems, docs for delivering babies, and so on. Docs who normally deal with an infectious diseases (mumps, measles, chicken pox, syphilis, and so one) are the natural group to learn about and research a newly emerging infectious diseases like Lyme ... and so they did.
The problem is that those early docs came to some pretty quick conclusions about Lyme being rare, hard to get, and easy to cure, but those docs didn't keep working on their research to learn that Lyme is not just a simple illness with a quick and easy cure: it is a complex bacterial infection, related to syphilis, and it has extra tricks to avoid easy treatment.
That's the part that is causing so much discord in the medical community when it comes to Lyme: the early docs are still practicing, and they are firm in their early conclusions, never mind more recent research that shows the complexity of Lyme and its treatment.
This split in the medical community has created the older view of Lyme, and a newer view that recognizes the tricks Lyme can play that make it hard to diagnose and treat compared to ... say, measles. It is hard to tell what kind of doc you are seeing when you book an appointment with a 'Lyme specialist', or even just a infectious disease doctor: You may be getting the 'it's-not-a-big-deal' approach from one side, which treats with simple doxycycline antibiotics for a few weeks and tells you are cured, even if you still have symptoms -- on the theory that the body is still over-reacting to a now-cured infection. On the other hand, you may get a more progressive doc who knows that Lyme is just not that simple: it often (half the time, perhaps) comes with other, separate infections from the 'Lyme' ticks, which need separate testing and separate meds from Lyme, and Lyme also has certain tricks that allow it to evade the usual diagnostic blood tests, so that the test result can come back negative ('You don''t have Lyme') when really you DO have Lyme.
What a mess, eh? It will all get sorted out at some point, but in the meantime, we patients have to be aware of the split in the medical community and be aware of what approach your particular doctor takes. One helpful indicator is that the more progressive thinkers in the medical community are often members of the voluntary group, "International Lyme and Associated Diseases Society", or ILADS for short. An ILADS doctor views Lyme and its co-infections as serious, complex, and requiring a careful assessment of what medications to give and in what order, depending on how many co-infections the tick brought with it. These are the LLMDs (shorthand for 'Lyme-literate medical doctors') -- they are MDs, but they think more progressive thoughts than run-of-the-mill MDs about Lyme and its co-infections, how to diagnose, and how to treat.
If you ask an MD if s/he is an LLMD, they will likely say no, because the term is just patient slang to label the more progressive docs, not an official title or degree. A good indicator is if an MD is a member of ILADS, but even then, there are variations among docs about how to test and treat. Lyme is definitely still being figured out. So if the first LLMD you see doesn't seem to fit somehow, then start over with a different one till you feel you have confidence in the doc and you are communicating well.
Hope this helps and doesn't make it more complicated for you. Best wishes -- !
"LLMD" is what patients call MDs who have an understanding of Lyme and its common co-infections that is far more thoughtful and understanding than that of many neurologists, rheumatologists, infectious disease [ID] docs, and others who often treat Lyme patients. Lyme is an infectious disease (carried by ticks), so you'd think ID docs would have the whole thing figured out; alas, not often. The medical community as a whole has locked onto Lyme as non-serious disease that is (as said above) rare, hard to get, and easy to cure. It is however a relatively recent disease spreading rapidly through many areas, but the initial docs who studied Lyme truly were seeing a fairly 'rare' disease. Early treatment with a short course of doxycycline was a good try, but the docs who started with that treatment never kept up with progressively newer and better understanding of Lyme and what it is and how it operates.
Because modern medicine is so complex, many (even most) docs have branched out into specialty areas, so that there are docs for feet, docs for eyes, docs for digestive problems, docs for delivering babies, and so on. Docs who normally deal with an infectious diseases (mumps, measles, chicken pox, syphilis, and so one) are the natural group to learn about and research a newly emerging infectious diseases like Lyme ... and so they did.
The problem is that those early docs came to some pretty quick conclusions about Lyme being rare, hard to get, and easy to cure, but those docs didn't keep working on their research to learn that Lyme is not just a simple illness with a quick and easy cure: it is a complex bacterial infection, related to syphilis, and it has extra tricks to avoid easy treatment.
That's the part that is causing so much discord in the medical community when it comes to Lyme: the early docs are still practicing, and they are firm in their early conclusions, never mind more recent research that shows the complexity of Lyme and its treatment.
This split in the medical community has created the older view of Lyme, and a newer view that recognizes the tricks Lyme can play that make it hard to diagnose and treat compared to ... say, measles. It is hard to tell what kind of doc you are seeing when you book an appointment with a 'Lyme specialist', or even just a infectious disease doctor: You may be getting the 'it's-not-a-big-deal' approach from one side, which treats with simple doxycycline antibiotics for a few weeks and tells you are cured, even if you still have symptoms -- on the theory that the body is still over-reacting to a now-cured infection. On the other hand, you may get a more progressive doc who knows that Lyme is just not that simple: it often (half the time, perhaps) comes with other, separate infections from the 'Lyme' ticks, which need separate testing and separate meds from Lyme, and Lyme also has certain tricks that allow it to evade the usual diagnostic blood tests, so that the test result can come back negative ('You don''t have Lyme') when really you DO have Lyme.
What a mess, eh? It will all get sorted out at some point, but in the meantime, we patients have to be aware of the split in the medical community and be aware of what approach your particular doctor takes. One helpful indicator is that the more progressive thinkers in the medical community are often members of the voluntary group, "International Lyme and Associated Diseases Society", or ILADS for short. An ILADS doctor views Lyme and its co-infections as serious, complex, and requiring a careful assessment of what medications to give and in what order, depending on how many co-infections the tick brought with it. These are the LLMDs (shorthand for 'Lyme-literate medical doctors') -- they are MDs, but they think more progressive thoughts than run-of-the-mill MDs about Lyme and its co-infections, how to diagnose, and how to treat.
If you ask an MD if s/he is an LLMD, they will likely say no, because the term is just patient slang to label the more progressive docs, not an official title or degree. A good indicator is if an MD is a member of ILADS, but even then, there are variations among docs about how to test and treat. Lyme is definitely still being figured out. So if the first LLMD you see doesn't seem to fit somehow, then start over with a different one till you feel you have confidence in the doc and you are communicating well.
Hope this helps and doesn't make it more complicated for you. Best wishes -- !
PS If you do not already have full copies of your Mayo clinic and other tests (not just summary pages), call and get them sent to you pronto, so you will have them in hand when you see your new LLMD. An LLMD can read test results in a far different way from a nonLLMD, and it will save time, effort and money for the new doc to have a leg up with the previous tests, however inadequate they may be. Every data point is good to have in the right hands.
Welcome to MedHelp Lyme --
Sorry to hear what you are going through, and good for you for continuing to pursue what Mayo may have missed. There are many otherwise fine MDs who don't understand Lyme disease and the other infections also carried by the 'Lyme' ticks, and you may have run into that barrier.
The good news is: Mayo ruled out most of the likely possibilities [except Lyme]. The bad news is: spinal fluid isn't a particularly effective test to determine whether Lyme is present, from what I read. Unfortunately, you're not alone. Fortunately, there are a lot of us out here who can give you some thoughts to pursue.
-- You say: "Had full work up at Mayo neurology, everything, and they didn't find any neurological disease." Oddly enough, neurologists are well known to miss making a proper diagnosis of Lyme. Their training tells them that Lyme is rare, hard to get, and (when diagnosed) easy to cure -- and they risk being wrong on all three counts. Lyme is a new and spreading disease not well understood by the docs who should know better, including infectious disease (ID) docs and neurologists.
-- You say: "They tested my spinal fluid for Lyme." Lyme is not often detected in the spinal fluid. In addition, the old standard blood tests for Lyme (the tests are ELISA and Western blot) are not terribly useful, because the tests look for the body's immune system against a Lyme infection in order to make a diagnosis. Lyme bacteria, however, have a special trick: they can and do suppress the human immune system, so you can have a raging Lyme infection, but the ELISA and W.blot tests too often give a negative test result.
More progressive MDs understand this and have adopted a newer type of test called PCR, short for polymerase chain reaction, which looks for Lyme DNA in your blood, rather than relying on your immune system to determine whether you have Lyme. At the same time, the progressive MDs will be on the lookout for additional symptoms which indicate that the tick that got you carried other, separate infections such as babesiosis, ehrlichiosis, bartonella, and a few others (called as a group 'co-infections'). The symptoms all blurring together can confuse even a good doc, and if the doc already doesn't think Lyme is a big deal might just ignore the whole situation.
And one other strike against the usual Lyme doc approach: that no matter what infections you have (Lyme and/or the co-infections), docs may fail to test for the co-infections and may treat Lyme and/or the co-infections only with doxycycline for a few weeks. Doxy may well be ineffective, depending on the infection(s) in question, and a few weeks' treatment may be wholly insufficient (even if otherwise effective) because Lyme bacteria have an exceptionally slow reproductive cycle, and it is while the bacterial cell wall is dividing that it is most susceptible to the meds. So inadequate diagnosis, inappropriate meds, and failure to test for likely co-infections can leave you ill permanently.
(There is some discussion in the medical world that what is called 'fibromyalgia' syndrome is really just untreated Lyme disease. Hmmm.)
What to do? I would find a Lyme specialist for a second opinion. I personally went through 20 highly trained and experienced MDs before #20 ran a Lyme test ... miraculously, I tested positive even though enough time had passed that I could easily have shown negative on the test but still be infected. That doc, however, said that I 'could not possibly have Lyme' because I wasn't sick enough ... actually, what she really said was that I *couldn't possibly have Lyme because she had Lyme patients, but they were all near death* -- and I wasn't. Stupid doc tricks, eh.
I already knew that Lyme was serious, so I took my positive test to a Lyme doc, was diagnosed with Lyme and babesiosis [like malaria], treated with appropriate antibiotics for an extended period of months, and am today quite well, some seven years later. A Lyme doc can be in any specialty or none (e.g., as a general practitioner), but is seldom found among infectious disease docs -- how ironic. My own LLMD was trained as an immunologist, fyi. It's a matter of interest and mindset more than of official affiliations.
-- You say: "Also had upper endoscopy, echocardiogram, CT and additional blood tests with no positive results."
It's good that these issues have been ruled out, but I would encourage you to find a Lyme specialist to either rule out Lyme and its co-infections *or* be diagnosed properly. Lyme is in the same bacterial family as syphilis, with the same terrible results if untreated.
-- How to find a Lyme specialist? There is a voluntary organization for LLMDs called ILADS (International Lyme and Associated Diseases Society), and those are the docs who understand Lyme diagnosis and treatment (or will tell you you don't have it). You can send an email to --- contact [at] ILADS [dot] org --- and tell them where you are located generally (e.g., 'Providence RI area') and how far you can travel, and they will send you the name of LLMDs nearby. You can also check with local Lyme patient groups for recommendations and leads to a good LLMD.
And that brings me to this: being an ILADS member is a good sign in a doc, but it is no guarantee that s/he really IS a good doc. As with any other medical encounter, wear your skeptical hat when you go for an appointment.
There may also be local Lyme patient groups near you -- you could check them out as well, tho know that quality of the groups' leadership may vary, just as a matter of happenstance.
Let us know how you do and how we can help -- best wishes!
Sorry to hear what you are going through, and good for you for continuing to pursue what Mayo may have missed. There are many otherwise fine MDs who don't understand Lyme disease and the other infections also carried by the 'Lyme' ticks, and you may have run into that barrier.
The good news is: Mayo ruled out most of the likely possibilities [except Lyme]. The bad news is: spinal fluid isn't a particularly effective test to determine whether Lyme is present, from what I read. Unfortunately, you're not alone. Fortunately, there are a lot of us out here who can give you some thoughts to pursue.
-- You say: "Had full work up at Mayo neurology, everything, and they didn't find any neurological disease." Oddly enough, neurologists are well known to miss making a proper diagnosis of Lyme. Their training tells them that Lyme is rare, hard to get, and (when diagnosed) easy to cure -- and they risk being wrong on all three counts. Lyme is a new and spreading disease not well understood by the docs who should know better, including infectious disease (ID) docs and neurologists.
-- You say: "They tested my spinal fluid for Lyme." Lyme is not often detected in the spinal fluid. In addition, the old standard blood tests for Lyme (the tests are ELISA and Western blot) are not terribly useful, because the tests look for the body's immune system against a Lyme infection in order to make a diagnosis. Lyme bacteria, however, have a special trick: they can and do suppress the human immune system, so you can have a raging Lyme infection, but the ELISA and W.blot tests too often give a negative test result.
More progressive MDs understand this and have adopted a newer type of test called PCR, short for polymerase chain reaction, which looks for Lyme DNA in your blood, rather than relying on your immune system to determine whether you have Lyme. At the same time, the progressive MDs will be on the lookout for additional symptoms which indicate that the tick that got you carried other, separate infections such as babesiosis, ehrlichiosis, bartonella, and a few others (called as a group 'co-infections'). The symptoms all blurring together can confuse even a good doc, and if the doc already doesn't think Lyme is a big deal might just ignore the whole situation.
And one other strike against the usual Lyme doc approach: that no matter what infections you have (Lyme and/or the co-infections), docs may fail to test for the co-infections and may treat Lyme and/or the co-infections only with doxycycline for a few weeks. Doxy may well be ineffective, depending on the infection(s) in question, and a few weeks' treatment may be wholly insufficient (even if otherwise effective) because Lyme bacteria have an exceptionally slow reproductive cycle, and it is while the bacterial cell wall is dividing that it is most susceptible to the meds. So inadequate diagnosis, inappropriate meds, and failure to test for likely co-infections can leave you ill permanently.
(There is some discussion in the medical world that what is called 'fibromyalgia' syndrome is really just untreated Lyme disease. Hmmm.)
What to do? I would find a Lyme specialist for a second opinion. I personally went through 20 highly trained and experienced MDs before #20 ran a Lyme test ... miraculously, I tested positive even though enough time had passed that I could easily have shown negative on the test but still be infected. That doc, however, said that I 'could not possibly have Lyme' because I wasn't sick enough ... actually, what she really said was that I *couldn't possibly have Lyme because she had Lyme patients, but they were all near death* -- and I wasn't. Stupid doc tricks, eh.
I already knew that Lyme was serious, so I took my positive test to a Lyme doc, was diagnosed with Lyme and babesiosis [like malaria], treated with appropriate antibiotics for an extended period of months, and am today quite well, some seven years later. A Lyme doc can be in any specialty or none (e.g., as a general practitioner), but is seldom found among infectious disease docs -- how ironic. My own LLMD was trained as an immunologist, fyi. It's a matter of interest and mindset more than of official affiliations.
-- You say: "Also had upper endoscopy, echocardiogram, CT and additional blood tests with no positive results."
It's good that these issues have been ruled out, but I would encourage you to find a Lyme specialist to either rule out Lyme and its co-infections *or* be diagnosed properly. Lyme is in the same bacterial family as syphilis, with the same terrible results if untreated.
-- How to find a Lyme specialist? There is a voluntary organization for LLMDs called ILADS (International Lyme and Associated Diseases Society), and those are the docs who understand Lyme diagnosis and treatment (or will tell you you don't have it). You can send an email to --- contact [at] ILADS [dot] org --- and tell them where you are located generally (e.g., 'Providence RI area') and how far you can travel, and they will send you the name of LLMDs nearby. You can also check with local Lyme patient groups for recommendations and leads to a good LLMD.
And that brings me to this: being an ILADS member is a good sign in a doc, but it is no guarantee that s/he really IS a good doc. As with any other medical encounter, wear your skeptical hat when you go for an appointment.
There may also be local Lyme patient groups near you -- you could check them out as well, tho know that quality of the groups' leadership may vary, just as a matter of happenstance.
Let us know how you do and how we can help -- best wishes!
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