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Should I worry about Lyme Disease?
I have been having a difficult time lately. I have had tingling off and on in my hands and feet. Numbness at times as well. One of the most disturbing symptoms is double vision that comes and goes. It was getting better but has been getting worse again the past couple days. I have also recently started to lose my balance after exercising hard. Like I try to walk straight but I veer to the right and today I almost fell down if it wasn't for a friend there to catch me. I also get extremely tired some days with no reason. Some days I can have a good night's sleep but still barely stay awake by the afternoon and have to take a nap.
I've had the tingling and double vision happen about the same time last year but not as severe. I was tested for Lyme in March 2012 after I had a rash on my arm that was somewhat bullseye shaped but not exactly. I don't have a picture of it right now. Anyway, that test came back negative but I know you can get false negatives.
Does this sound like it could be Lyme disease? Or something else?
I have an appointment with a neurologist in 3 weeks.
I've had the tingling and double vision happen about the same time last year but not as severe. I was tested for Lyme in March 2012 after I had a rash on my arm that was somewhat bullseye shaped but not exactly. I don't have a picture of it right now. Anyway, that test came back negative but I know you can get false negatives.
Does this sound like it could be Lyme disease? Or something else?
I have an appointment with a neurologist in 3 weeks.
Ditto what Jackie said.
When I got very sick, I was living in Texas for just a year. There were no LLMD back then but I know there are now. So good luck!
When I got very sick, I was living in Texas for just a year. There were no LLMD back then but I know there are now. So good luck!
It sounds like the doc did not give you copies of all your medical records -- first thing I would do is call the doc's office and tell them you need copies of your file 'for ALL my records'.
By law, I believe you are entitled to have a copy of all your medical records including test results. I don't think they can charge you for the copying. The records belong to you; the doc can keep copies, but these are always *your* records. The most important thing in your file may be the test results.
Then your new doc will be one big step ahead in helping you because s/he has important data from those other records.
Many MDs do not understand Lyme and follow outdated approaches to testing and treatment. When I was ill with what turned out to be Lyme, I saw 20 MDs who had various ideas of what was wrong, and #20 (everything else having been tested) ran basic Lyme tests, called Western blot and ELISA.
They came back positive, but the doc said I 'could not possibly have Lyme.' End of conversation! That's how ignorant many MDs are when it comes to recognizing and dealing with Lyme. I took my positive test results to a Lyme specialist, who then ran some more precise tests, and I was properly diagnosed with Lyme and one co-infection, then treated with antibiotics for months (not weeks -- Lyme takes longer to treat than many infections), and now years later, I am still fine.
Your question about whether new tests would come back the same as the previous ones, and the answer may be yes. The difference is that a Lyme specialist can read the tests and understand your symptoms in a way that a doc who is not up to date on Lyme can manage.
So: (1) get all copies of your previous tests; (2) in the meantime, find a Lyme specialist, and (3) get an appointment. Sometimes there is a wait for an appointment, so don't wait.
To find a Lyme specialist:
(1) there may be a local Lyme patient group near you who can recommend a local Lyme doc (the internet is your friend in looking for such patient groups), and/or
(2) go to the main voluntary group of MDs who have a special interest in Lyme disease, International Lyme and Associated Diseases Society [ILADS] website at "ILADS.org" (or just search for --- ILADS referral. The first few links are related to ILADS (at least on my browser).
You can then type in your location ('Dallas TX'), and ILADS will send you names of member docs near you. If the first batch of names is not close enough or you're not comfortable with the docs or whatever, go back and ask for more names from ILADS. Ask a friend to help make the calls etc. -- sometimes Lyme makes tasks like this hard to do, but the 'brain fog' that can come with Lyme in some people will go away with treatment.
Let us know if we can help further and also how you do -- best wishes!
By law, I believe you are entitled to have a copy of all your medical records including test results. I don't think they can charge you for the copying. The records belong to you; the doc can keep copies, but these are always *your* records. The most important thing in your file may be the test results.
Then your new doc will be one big step ahead in helping you because s/he has important data from those other records.
Many MDs do not understand Lyme and follow outdated approaches to testing and treatment. When I was ill with what turned out to be Lyme, I saw 20 MDs who had various ideas of what was wrong, and #20 (everything else having been tested) ran basic Lyme tests, called Western blot and ELISA.
They came back positive, but the doc said I 'could not possibly have Lyme.' End of conversation! That's how ignorant many MDs are when it comes to recognizing and dealing with Lyme. I took my positive test results to a Lyme specialist, who then ran some more precise tests, and I was properly diagnosed with Lyme and one co-infection, then treated with antibiotics for months (not weeks -- Lyme takes longer to treat than many infections), and now years later, I am still fine.
Your question about whether new tests would come back the same as the previous ones, and the answer may be yes. The difference is that a Lyme specialist can read the tests and understand your symptoms in a way that a doc who is not up to date on Lyme can manage.
So: (1) get all copies of your previous tests; (2) in the meantime, find a Lyme specialist, and (3) get an appointment. Sometimes there is a wait for an appointment, so don't wait.
To find a Lyme specialist:
(1) there may be a local Lyme patient group near you who can recommend a local Lyme doc (the internet is your friend in looking for such patient groups), and/or
(2) go to the main voluntary group of MDs who have a special interest in Lyme disease, International Lyme and Associated Diseases Society [ILADS] website at "ILADS.org" (or just search for --- ILADS referral. The first few links are related to ILADS (at least on my browser).
You can then type in your location ('Dallas TX'), and ILADS will send you names of member docs near you. If the first batch of names is not close enough or you're not comfortable with the docs or whatever, go back and ask for more names from ILADS. Ask a friend to help make the calls etc. -- sometimes Lyme makes tasks like this hard to do, but the 'brain fog' that can come with Lyme in some people will go away with treatment.
Let us know if we can help further and also how you do -- best wishes!
If they do the same test for Lyme as before, could it still come back negative even if I'm having symptoms now? I'm not sure which test they did. I want to make sure if I get tested again it will be accurate.
I have come to think that the only rule that applies to everyone dealing with Lyme is this:
Lyme is different for everyone.
... which is partly why the docs sometimes have a hard time diagnosing it. The medical profession is learning, but when docs are trained to look for common symptoms and similar test results for any and all diseases, they are completely bamboozled when faced with Lyme, which is indeed different for everyone.
Some Lyme infections mess with the hormonal (endocrine) system, some with giving the brain fuzzy thinking (I had that), some with the nervous system (like your tingling, perhaps), and all kinds of other things. That's why it's hard to compare notes with other Lyme patients, because it's to think that maybe you don't have Lyme since you have different symptoms from others. Tricky, aren't those bugz?
I think the coming-and-going of symptoms may be due to 'life cycles' of the bacteria overlapping and coming in waves. But indeed, everyone is different. If you have a symptom that others don't, you all could still have Lyme, just shown in a different way.
The yearly return of your symptoms may be due to seasonal changes -- even bacteria have up and down waves. Summer is sometimes a trigger for Lyme to start causing odd symptoms -- they climb out of their tiny caves and decide to party while the weather is nice and there are lots of humans playing in the grass and looking like lunch to the bacteria.
In addition to the seasonal fluctuations are the contributions of other infections that often come along with Lyme: babesiosis, ehrlichiosis, bartonella, anaplasmosis, Rocky Mountain spotted fever, Colorado tick fever, and a few others. These extra bugs that come along with Lyme sometimes are called as a group 'co-infections'. It's like in the summer in the old days: you could get mosquito bites, bee stings, fire ant bites, and other stuff. So it's Mother Nature trying new tricks on us now.
The fact that your symptoms are seasonal might be a good clue to your doc on what infection(s) to test for. Be sure to mention that, if you haven't already. When I had Lyme and babesia, I was so foggy-brained that I kept daily notes on how I was feeling, what meds I took, what food I ate, how well I slept, and so on. Then I would take my notebook or computer printout to the next appointment with my Lyme doc, and he would read the whole thing before calling me in. It gave him lots of clues to what co-infections might be lurking that had not be suspected yet and how well the antibiotics were working on the Lyme.
So don't expect your symptoms to be just like everyone else's, and be sure to communicate all your symptoms to your doc -- even the ones that seem minor. They may be related to something else and give the doc an important insight into what's going on inside, and therefore how to treat it ... because many of the co-infections need different medications, not just one or two. So informing your doc is a very important task for you to do! (And it's your way of getting back at the bugz. Serves them right!!)
Sounds like you are holding up well, though it's hard to go through, I know. Your last sentence about new symptoms in summer could indeed be Lyme, waking up to party in the nice weather with all those handy humans to bite.
From what I have read, going untreated for a period of time does not necessarily make it harder to treat Lyme. There is much about Lyme that seems to vary from person to person, so just keep your doc up to date so he know what's going on in the 95% of the time you are NOT in his office! Ha.
Take care, let us know how you're doing -- this site was a wonderful thing for me when I had Lyme and babesia -- finding people who really understood what I was going through was a wonderful thing. Sounds like you're doing fine, tho the road can seem mighty long. Just take care of yourself, sleep well, eat well, and know things will get better.
Lyme is different for everyone.
... which is partly why the docs sometimes have a hard time diagnosing it. The medical profession is learning, but when docs are trained to look for common symptoms and similar test results for any and all diseases, they are completely bamboozled when faced with Lyme, which is indeed different for everyone.
Some Lyme infections mess with the hormonal (endocrine) system, some with giving the brain fuzzy thinking (I had that), some with the nervous system (like your tingling, perhaps), and all kinds of other things. That's why it's hard to compare notes with other Lyme patients, because it's to think that maybe you don't have Lyme since you have different symptoms from others. Tricky, aren't those bugz?
I think the coming-and-going of symptoms may be due to 'life cycles' of the bacteria overlapping and coming in waves. But indeed, everyone is different. If you have a symptom that others don't, you all could still have Lyme, just shown in a different way.
The yearly return of your symptoms may be due to seasonal changes -- even bacteria have up and down waves. Summer is sometimes a trigger for Lyme to start causing odd symptoms -- they climb out of their tiny caves and decide to party while the weather is nice and there are lots of humans playing in the grass and looking like lunch to the bacteria.
In addition to the seasonal fluctuations are the contributions of other infections that often come along with Lyme: babesiosis, ehrlichiosis, bartonella, anaplasmosis, Rocky Mountain spotted fever, Colorado tick fever, and a few others. These extra bugs that come along with Lyme sometimes are called as a group 'co-infections'. It's like in the summer in the old days: you could get mosquito bites, bee stings, fire ant bites, and other stuff. So it's Mother Nature trying new tricks on us now.
The fact that your symptoms are seasonal might be a good clue to your doc on what infection(s) to test for. Be sure to mention that, if you haven't already. When I had Lyme and babesia, I was so foggy-brained that I kept daily notes on how I was feeling, what meds I took, what food I ate, how well I slept, and so on. Then I would take my notebook or computer printout to the next appointment with my Lyme doc, and he would read the whole thing before calling me in. It gave him lots of clues to what co-infections might be lurking that had not be suspected yet and how well the antibiotics were working on the Lyme.
So don't expect your symptoms to be just like everyone else's, and be sure to communicate all your symptoms to your doc -- even the ones that seem minor. They may be related to something else and give the doc an important insight into what's going on inside, and therefore how to treat it ... because many of the co-infections need different medications, not just one or two. So informing your doc is a very important task for you to do! (And it's your way of getting back at the bugz. Serves them right!!)
Sounds like you are holding up well, though it's hard to go through, I know. Your last sentence about new symptoms in summer could indeed be Lyme, waking up to party in the nice weather with all those handy humans to bite.
From what I have read, going untreated for a period of time does not necessarily make it harder to treat Lyme. There is much about Lyme that seems to vary from person to person, so just keep your doc up to date so he know what's going on in the 95% of the time you are NOT in his office! Ha.
Take care, let us know how you're doing -- this site was a wonderful thing for me when I had Lyme and babesia -- finding people who really understood what I was going through was a wonderful thing. Sounds like you're doing fine, tho the road can seem mighty long. Just take care of yourself, sleep well, eat well, and know things will get better.
Thank you so much for the reply! I never even had a round of antibiotics. So if it is Lyme, it has been totally untreated for a little over 3 years.
Can symptoms of Lyme come and go? Like can you feel totally fine for a while then have the symptoms return? That's kind of what has happened to me. I will be fine for about a year in between but each time the symptoms have returned stronger. At first I didn't put much thought in to the tingling symptoms until last summer when I had double vision for the first time as well as the tingling.
Can symptoms of Lyme come and go? Like can you feel totally fine for a while then have the symptoms return? That's kind of what has happened to me. I will be fine for about a year in between but each time the symptoms have returned stronger. At first I didn't put much thought in to the tingling symptoms until last summer when I had double vision for the first time as well as the tingling.
I would do as you are: continuing to look for answers. Lyme will not go away by itself, so determining whether you do or do not have Lyme is necessary to know whether you need to be treated.
Don't worry about your rash not being exactly bullseye shape ... quite a few of us who have had Lyme never had a rash or saw a tick. I'm one of those, but I definitely had Lyme and babesiosis, one of the common co-infections the 'Lyme' ticks often bring with them.
Lyme affects everyone a bit differently, so don't hold yourself to a strict list of what signs and symptoms you 'should' have. Mother Nature doesn't work that way, esp. when it comes to Lyme. You're right about the possibility of a false negative test, and good for you for plowing ahead.
After you see the neurologist and if consultation/test results are negative, you may want to consider seeing a Lyme specialist just as a second check. Neurology is one of the areas of medicine that firmly believes that Lyme is rare and hard to get, and that after a short course of doxycycline antibiotics, you are good to go, even if you still have symptoms -- the neurologists' theory is that the continuing symptoms are your immune system over-reacting to a now-gone Lyme infection.
If that happens with the neurologist, don't worry, just be sure to get full copies of ALL the test results the doc has done, and take them to a Lyme specialist for a second opinion if you have any concerns at all. It is what I would do.
The neurologist can rule out a variety of ailments and do so quite effectively, but the neurologists can drop the ball on Lyme -- because they have a different set of beliefs about Lyme and how to diagnose and treat it. Sounds odd, I know, since we are accustomed to having docs all on the same page when it comes to illness ... but Lyme is very new to the world, compared to most other diseases, so the medical profession is still in disarray.
Keep us posted!
Don't worry about your rash not being exactly bullseye shape ... quite a few of us who have had Lyme never had a rash or saw a tick. I'm one of those, but I definitely had Lyme and babesiosis, one of the common co-infections the 'Lyme' ticks often bring with them.
Lyme affects everyone a bit differently, so don't hold yourself to a strict list of what signs and symptoms you 'should' have. Mother Nature doesn't work that way, esp. when it comes to Lyme. You're right about the possibility of a false negative test, and good for you for plowing ahead.
After you see the neurologist and if consultation/test results are negative, you may want to consider seeing a Lyme specialist just as a second check. Neurology is one of the areas of medicine that firmly believes that Lyme is rare and hard to get, and that after a short course of doxycycline antibiotics, you are good to go, even if you still have symptoms -- the neurologists' theory is that the continuing symptoms are your immune system over-reacting to a now-gone Lyme infection.
If that happens with the neurologist, don't worry, just be sure to get full copies of ALL the test results the doc has done, and take them to a Lyme specialist for a second opinion if you have any concerns at all. It is what I would do.
The neurologist can rule out a variety of ailments and do so quite effectively, but the neurologists can drop the ball on Lyme -- because they have a different set of beliefs about Lyme and how to diagnose and treat it. Sounds odd, I know, since we are accustomed to having docs all on the same page when it comes to illness ... but Lyme is very new to the world, compared to most other diseases, so the medical profession is still in disarray.
Keep us posted!
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