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Lymes Disease symptoms?
Hi,
I have been diagnosed with anxiety and I am currently taking 10mg Lexapro which doe not seem to be helping. I have really bad physical symptoms and I think there is something else medically wrong with me, even though the various health test that I've had all came up negative. My question is, does anyone of you suffering from lymes disease feel constantly tired all of the time, feel like you are out of your body, like on drugs or living in a constant dream? I guess it's called depersonalization? But can it happen Constantly? I also have floaters, halos, white lights in my vision and doubled vision. Like, if I focus on an object, whatever other object is behind it or beside it is doubled. If you know what I mean? And when I sleep my body also vibrates. I have obsessive thoughts, I do obsessive things, I am constantly thinking, and feel like I have some kind of disease that the doctors cannot find. I cannot concentrate, I forget everything, feel foggy headed, and just feel empty. And can Lymes disease cause constant joint popping? I have constant grinding, popping, and cracking sounds in my joints all over my body, especially in my neck, very badly in my shoulders, my back, jaw, elbows, wrists, knees and hips. It does not usually hurt but my muscles and joints hurt and seem to be tense, weak and stiff. Can lymes disease cause all of these CONSTANT symptoms? This problem is effecting my life and my relationships and I just want to feel normal and like my old self again. I just need to know if lymes disease can cause all of these symptoms, and constantly, 24/7 I have these symptoms. like I said, I was diagnosed with anxiety but I do not believe that anxiety can cause all of the agony. I was tested for lymes disease twice, and both came up negative. The first time the antibody test came up "high" so they did a westen blot and the 41 band came up positive, but thats it so they said the western blot was negative and that I didnt have lymes disease. I just do not know what to do? for those of you who hve lymes disease, do my symptoms sound like lymes disease? or could it really just be anxiety? I am currently residing in Hampton Roads Va, and do not know how to find an LLMD near me. If any of you could help it would be greatly appreciated. And I have had these symptoms for almost a year now, so if I do find an LLMD near me and do in fact find out I have lymes disease would it still be curable? THIS IS TAKING OVER MY LIFE! PLEASE HELP ME!!!
I have been diagnosed with anxiety and I am currently taking 10mg Lexapro which doe not seem to be helping. I have really bad physical symptoms and I think there is something else medically wrong with me, even though the various health test that I've had all came up negative. My question is, does anyone of you suffering from lymes disease feel constantly tired all of the time, feel like you are out of your body, like on drugs or living in a constant dream? I guess it's called depersonalization? But can it happen Constantly? I also have floaters, halos, white lights in my vision and doubled vision. Like, if I focus on an object, whatever other object is behind it or beside it is doubled. If you know what I mean? And when I sleep my body also vibrates. I have obsessive thoughts, I do obsessive things, I am constantly thinking, and feel like I have some kind of disease that the doctors cannot find. I cannot concentrate, I forget everything, feel foggy headed, and just feel empty. And can Lymes disease cause constant joint popping? I have constant grinding, popping, and cracking sounds in my joints all over my body, especially in my neck, very badly in my shoulders, my back, jaw, elbows, wrists, knees and hips. It does not usually hurt but my muscles and joints hurt and seem to be tense, weak and stiff. Can lymes disease cause all of these CONSTANT symptoms? This problem is effecting my life and my relationships and I just want to feel normal and like my old self again. I just need to know if lymes disease can cause all of these symptoms, and constantly, 24/7 I have these symptoms. like I said, I was diagnosed with anxiety but I do not believe that anxiety can cause all of the agony. I was tested for lymes disease twice, and both came up negative. The first time the antibody test came up "high" so they did a westen blot and the 41 band came up positive, but thats it so they said the western blot was negative and that I didnt have lymes disease. I just do not know what to do? for those of you who hve lymes disease, do my symptoms sound like lymes disease? or could it really just be anxiety? I am currently residing in Hampton Roads Va, and do not know how to find an LLMD near me. If any of you could help it would be greatly appreciated. And I have had these symptoms for almost a year now, so if I do find an LLMD near me and do in fact find out I have lymes disease would it still be curable? THIS IS TAKING OVER MY LIFE! PLEASE HELP ME!!!
I hear you.
Your approach sounds reasonable to try the ID doc and then the Lyme doc.
Many of us have the same insurance issues you do, and pay out of pocket and then file for reimbursement from the insurance company. The insurance companies usually don't balk, or at least I don't remember hearing anyone say they couldn't get reimbursed. Can you borrow from your family?
All the Lyme tests require careful interpretation in light of your symptoms and history, so they are not a yes/no, stop/go, red/green kind of test. An experienced LLMD can usually do a good job of reading the signals, tho, and can probably tell you pretty accurately what's up. Sometimes after a long untreated infection has been in place, the tests show up negative because your immune system has just given up fighting, and then the LLMD might give you some antibiotics to stir things up and cause your immune system to get to work again ... it's called an 'antibiotic challenge'. The usual tests measure not the bacteria in your system, but measures the antibodies your immune system makes against the bacteria, so that's why waking up your immune system can be necessary for the test to be most useful. Your doc will figure that out.
Also, take with you copies of all the tests you've had done by your current doc so the LLMD can see what's been done with what results. That can help. Your doc's office should not give you static about the test copies and usually don't charge you for them.
I'm sorry for how lousy you feel. I've been there and it really is awful. Anxiety is a big part of Lyme, and I've been there too ... still am sometimes. Take your vitamins, try to sleep and eat well. Stay in touch --
Your approach sounds reasonable to try the ID doc and then the Lyme doc.
Many of us have the same insurance issues you do, and pay out of pocket and then file for reimbursement from the insurance company. The insurance companies usually don't balk, or at least I don't remember hearing anyone say they couldn't get reimbursed. Can you borrow from your family?
All the Lyme tests require careful interpretation in light of your symptoms and history, so they are not a yes/no, stop/go, red/green kind of test. An experienced LLMD can usually do a good job of reading the signals, tho, and can probably tell you pretty accurately what's up. Sometimes after a long untreated infection has been in place, the tests show up negative because your immune system has just given up fighting, and then the LLMD might give you some antibiotics to stir things up and cause your immune system to get to work again ... it's called an 'antibiotic challenge'. The usual tests measure not the bacteria in your system, but measures the antibodies your immune system makes against the bacteria, so that's why waking up your immune system can be necessary for the test to be most useful. Your doc will figure that out.
Also, take with you copies of all the tests you've had done by your current doc so the LLMD can see what's been done with what results. That can help. Your doc's office should not give you static about the test copies and usually don't charge you for them.
I'm sorry for how lousy you feel. I've been there and it really is awful. Anxiety is a big part of Lyme, and I've been there too ... still am sometimes. Take your vitamins, try to sleep and eat well. Stay in touch --
Thank you so much for your post. So I guess do you think the best thing to do is to go and try and infectious disease doctor to see if they can properly diagnose and treat me for Lyme disease, and if they cannot, then call an LLMD? I am close to the infectious disease doctors, but the closest LLMD to me is in Maryland 4 hours away, and both LLMD's I have came in contact with both said they do not take any type of insurance. They said I can make a claim to my insurance company, but they do not take it. May I ask how did you pay your LLMD? Out of pocket or did you make a claim to your insurance and they actually paid for it? I just do not know what to do because I already have outstanding doctor bills and I do not have enough money to pay in full for the LLMD visits, much less the medicine and treatment. Also I have another question, if I go to an LLMD, can they run tests and be able to tell me if I DO NOT have it? What I mean is, can they DEFINITELY tell me if I do or even if I DON'T have Lyme disease by blood tests? Sorry if I'm being confusing but I hope you understand what Im trying to say. I feel so horrible, there is no way this can just be anxiety. As of lately I have a server headache in my temples and behind my eyes, my jaw hurts so bad and pops constantly, my joints constantly crack and pop, especially my back, shoulders grind everytime I move my arms, and so does my neck. It also hurts to lift my Arms all the way and my arms are really weak and so are my legs, I have bad depersonalization and brain fog, I am very angry and frustrated and I've been serverely depressed. I'm getting desperate and do not know what to do. I feel horrible everyday and just want my life back.
That's a good question you are asking. The answer is not straightforward, unfortunately. There's a reason:
A couple of decades ago, when docs were first figuring out there was a new disease spreading in the northeast (like Connecticut), the first docs involved were two kinds: infectious disease (ID) docs; and rheumatologists, who treat arthritis and swollen joints -- one of the obvious symptoms of the new mysterious disease were swollen knees.
Over the years, these groups of docs (many of them belonging to an MD organization called Infectious Disease Society of America, or IDSA) did studies and wrote papers and came to some conclusions and recommendations for what was named Lyme disease after the Conn. town where it was first identified.
Unfortunately, those same docs who were the 'discoverers' of Lyme got stuck on some specific ideas of how to treat Lyme, and they staked their reputations on the basic ideas that Lyme was hard to get and easy to cure with a couple weeks of antibiotics.
Over time, however, other docs began to notice that Lyme patients were sometimes still sick after a short course treatment was done, and began to question the IDSA position on a couple weeks of antibiotics being sufficient. The IDSA and the original Lyme docs refused to budge and continue to this day to insist that they are right about Lyme: anyone who still has Lyme symptoms after a short course of antibiotics isn't really sick, they have just developed (according to the IDSA-types) an auto-immune reaction, in which their immune systems continue to react as though the patient still has Lyme, but really doesn't.
Over the years while the IDSA and the original Lyme docs were busy sticking to their original ideas and treatment approaches, other docs were taking a more open-minded approach to what Lyme might be and how it might be treated, because they saw a lot of people still suffering after the IDSA-approved couple of weeks of antibiotics. Those open-minded docs were often not IDSA members, and were not even infectious disease docs: they were simply docs who saw suffering that was not relieved by the IDSA-approved treatment, and they tried to figure out the puzzle that is Lyme.
Those open-minded docs were of all kinds: internists, GPs, endocrinologists, pediatricians, and other specialists. Because the IDSA has 'infectious diseases' staked out as their territory, and the truly Lyme-savvy docs come from all areas of medicine, the nickname of 'Lyme-Literate MD' sprang up and has stuck as shorthand for a doc who takes Lyme seriously in a way that the IDSA apparently does not. There is no degree or certificate making someone an LLMD, and many if not most of them don't call themselves LLMDs ... Some LLMDs are indeed infectious disease docs, but overall I would guess from what I read and what I hear that an ID doc is not likely to think like an LLMD would -- but that is no hard-and-fast rule.
This is a really long way of saying: the ID doc you are thinking about seeing may practice like an LLMD, but there is no way to find that out without seeing him/her. Asking any MD if they are an LLMD is likely to get a strange look and no answer in return, since it's just a nickname without official meaning.
The LLMD-types, regardless of what they do or don't call themselves, often belong to another organization called ILADS, short for International Lyme and Associated Disease Society (website at ILADS [dot] org).
In some states, MDs are protected by state laws allowing to practice medicine according to their own conscience and what they believe to be right for their patients, even if that treatment goes again conventional wisdom like the IDSA has set up as the 'correct' way to diagnose and treat Lyme.
In other states, the laws do not give an MD the right of conscience, and if they don't hold to the standards set up by organizations like the IDSA, their licenses to practice medicine can be terminated. I understand there are some areas in which LLMDs have lost the ability to practice medicine and in effect been run out of the state. For that reason alone, many docs who lean toward the ILADS approach will not say so publicly and that is why we don't post LLMD's names in public here, because of the risk that they will be harrassed by local/state medical boards who line up with the IDSA 'hard to get, easy to cure' approach.
Now to answer your specific questions:
--Is an ID doc the same as an LLMD?
Maybe; but maybe not, and perhaps not likely. The only way to find out is to go for an appointment and see what reaction they have to your symptoms and history.
--Does an ID doc use the same tests and treatment as an LLMD?
Maybe, but again, perhaps not likely. Depends on the individual doc and how 'enlightened' he/she is.
--Does an ID doc know a lot about Lyme?
Maybe, but they may THINK they know a lot about Lyme, but really don't, if they follow the IDSA standards of diagnosis and treatment.
--Can you get the same outcome by going to an ID doc instead of an LLMD?
Maybe, but not likely.
That said, if the ID doc is easy to get to and is on your insurance, for example, then going to see him/her can't hurt, except in that generally speaking, the longer you wait for diagnosis and treatment, the more persistent the disease can be, but I personally think that after the first couple of weeks or months of infection, a little extra time probably doesn't make a big difference in the effectiveness of treatment. I am NOT medically trained, however, so please don't rely on me to in making your medical decisions. I personally went to a lot of docs before getting diagnosed with Lyme and a coinfection, and finally found an LLMD who did test and diagnose me properly.
So, the short answer is: Can an ID doc do what an LLMD does? Maybe, but you have to check the doc out by what tests s/he runs and what answers and attitude you get back. If you walk in and ask the doc if s/he is an LLMD, you likely won't get a straight answer, and the doc (if s/he is NOT an LLMD) may be very suspicious and not very friendly. I have had an ID doc, when I told him I had been treated for Lyme, not want anything to do with me, even tho I had gotten another tick bite and was quite ill. All the doc wanted was to get me out of his office.
All this puts the patients in a terrible spot, but it's where medicine is today, unfortunately. You might get lucky, tho, and in your situation I might go see the ID doc and hope for the best. Getting treated sooner rather than later is a good thing, since Lyme can burrow in and be harder to cure later, and even ID docs believe in treating Lyme, only not for very long. You might end up having to go find an LLMD too, but you gotta start somewhere.
Sorry for the long story and not very helpful commentary -- wish there were a clearer answer for all of us! Let us know what you decide to do and how it goes, ok?
A couple of decades ago, when docs were first figuring out there was a new disease spreading in the northeast (like Connecticut), the first docs involved were two kinds: infectious disease (ID) docs; and rheumatologists, who treat arthritis and swollen joints -- one of the obvious symptoms of the new mysterious disease were swollen knees.
Over the years, these groups of docs (many of them belonging to an MD organization called Infectious Disease Society of America, or IDSA) did studies and wrote papers and came to some conclusions and recommendations for what was named Lyme disease after the Conn. town where it was first identified.
Unfortunately, those same docs who were the 'discoverers' of Lyme got stuck on some specific ideas of how to treat Lyme, and they staked their reputations on the basic ideas that Lyme was hard to get and easy to cure with a couple weeks of antibiotics.
Over time, however, other docs began to notice that Lyme patients were sometimes still sick after a short course treatment was done, and began to question the IDSA position on a couple weeks of antibiotics being sufficient. The IDSA and the original Lyme docs refused to budge and continue to this day to insist that they are right about Lyme: anyone who still has Lyme symptoms after a short course of antibiotics isn't really sick, they have just developed (according to the IDSA-types) an auto-immune reaction, in which their immune systems continue to react as though the patient still has Lyme, but really doesn't.
Over the years while the IDSA and the original Lyme docs were busy sticking to their original ideas and treatment approaches, other docs were taking a more open-minded approach to what Lyme might be and how it might be treated, because they saw a lot of people still suffering after the IDSA-approved couple of weeks of antibiotics. Those open-minded docs were often not IDSA members, and were not even infectious disease docs: they were simply docs who saw suffering that was not relieved by the IDSA-approved treatment, and they tried to figure out the puzzle that is Lyme.
Those open-minded docs were of all kinds: internists, GPs, endocrinologists, pediatricians, and other specialists. Because the IDSA has 'infectious diseases' staked out as their territory, and the truly Lyme-savvy docs come from all areas of medicine, the nickname of 'Lyme-Literate MD' sprang up and has stuck as shorthand for a doc who takes Lyme seriously in a way that the IDSA apparently does not. There is no degree or certificate making someone an LLMD, and many if not most of them don't call themselves LLMDs ... Some LLMDs are indeed infectious disease docs, but overall I would guess from what I read and what I hear that an ID doc is not likely to think like an LLMD would -- but that is no hard-and-fast rule.
This is a really long way of saying: the ID doc you are thinking about seeing may practice like an LLMD, but there is no way to find that out without seeing him/her. Asking any MD if they are an LLMD is likely to get a strange look and no answer in return, since it's just a nickname without official meaning.
The LLMD-types, regardless of what they do or don't call themselves, often belong to another organization called ILADS, short for International Lyme and Associated Disease Society (website at ILADS [dot] org).
In some states, MDs are protected by state laws allowing to practice medicine according to their own conscience and what they believe to be right for their patients, even if that treatment goes again conventional wisdom like the IDSA has set up as the 'correct' way to diagnose and treat Lyme.
In other states, the laws do not give an MD the right of conscience, and if they don't hold to the standards set up by organizations like the IDSA, their licenses to practice medicine can be terminated. I understand there are some areas in which LLMDs have lost the ability to practice medicine and in effect been run out of the state. For that reason alone, many docs who lean toward the ILADS approach will not say so publicly and that is why we don't post LLMD's names in public here, because of the risk that they will be harrassed by local/state medical boards who line up with the IDSA 'hard to get, easy to cure' approach.
Now to answer your specific questions:
--Is an ID doc the same as an LLMD?
Maybe; but maybe not, and perhaps not likely. The only way to find out is to go for an appointment and see what reaction they have to your symptoms and history.
--Does an ID doc use the same tests and treatment as an LLMD?
Maybe, but again, perhaps not likely. Depends on the individual doc and how 'enlightened' he/she is.
--Does an ID doc know a lot about Lyme?
Maybe, but they may THINK they know a lot about Lyme, but really don't, if they follow the IDSA standards of diagnosis and treatment.
--Can you get the same outcome by going to an ID doc instead of an LLMD?
Maybe, but not likely.
That said, if the ID doc is easy to get to and is on your insurance, for example, then going to see him/her can't hurt, except in that generally speaking, the longer you wait for diagnosis and treatment, the more persistent the disease can be, but I personally think that after the first couple of weeks or months of infection, a little extra time probably doesn't make a big difference in the effectiveness of treatment. I am NOT medically trained, however, so please don't rely on me to in making your medical decisions. I personally went to a lot of docs before getting diagnosed with Lyme and a coinfection, and finally found an LLMD who did test and diagnose me properly.
So, the short answer is: Can an ID doc do what an LLMD does? Maybe, but you have to check the doc out by what tests s/he runs and what answers and attitude you get back. If you walk in and ask the doc if s/he is an LLMD, you likely won't get a straight answer, and the doc (if s/he is NOT an LLMD) may be very suspicious and not very friendly. I have had an ID doc, when I told him I had been treated for Lyme, not want anything to do with me, even tho I had gotten another tick bite and was quite ill. All the doc wanted was to get me out of his office.
All this puts the patients in a terrible spot, but it's where medicine is today, unfortunately. You might get lucky, tho, and in your situation I might go see the ID doc and hope for the best. Getting treated sooner rather than later is a good thing, since Lyme can burrow in and be harder to cure later, and even ID docs believe in treating Lyme, only not for very long. You might end up having to go find an LLMD too, but you gotta start somewhere.
Sorry for the long story and not very helpful commentary -- wish there were a clearer answer for all of us! Let us know what you decide to do and how it goes, ok?
Thank you so much for your post. I am currently looking into two LLMD's in Maryland, which is pretty far away but they are supposedly the closest LLMD's to me. I hope I can get in soon and be seen, I really hope they can tell me during the first visit if they think I have Lyme Disease, I really hope so because I do not want to have to drive four to five hours that frequently. I do have 1 very important question...is an "infectious disease doctor" the same thing as an LLMD? Or does an infectious disease doctor use the same type of test and treatment as an LLMD? And do they know alot about Lyme disease? Basically what I'm asking is can I go to an infectious disease doctor and get the same outcome as going to an LLMD? Can an infectious disease doctor diagnose me and treat me for Lyme disease? I was told there might be a good infectious disease doctor in my area. Please write me back as soon as you can. Thank you so much.
Your mom sounds to be very wise! You are lucky to have her in your corner.
Based on symptoms, the LLMD might (perhaps) be able to make a tenative diagnosis. However, s/he will probably run some blood tests, will take your history of symptoms and where you might have been exposed to ticks, and then ask you to come back in a couple of weeks when the test results are back. This is just based on my own experience. Every doc is different, and so is every patient and every disease presentation.
When the tests come back, they may show a strong indication of infection, which makes the diagnosis easier. However, the tests are not perfect, and they must be read in conjunction with your symptoms and history. That's where the 'art' of medicine is important, and thus your MD's skill and experience.
I do believe that Lyme can be cured -- and in others, Lyme can be driven down to such a low level it's a functional cure. Also, one of the symptoms of Lyme is anxiety -- that nervousness and worry that just won't shut up, nagging at your brain about everything. Many if not most or all of us posting here have had anxiety, about both daily life and about Lyme. That too begins to recede when treatment takes hold. Eat well, sleep well, take your vitamins and your meds, and you'll be amazed what can happen.
Best wishes --
Based on symptoms, the LLMD might (perhaps) be able to make a tenative diagnosis. However, s/he will probably run some blood tests, will take your history of symptoms and where you might have been exposed to ticks, and then ask you to come back in a couple of weeks when the test results are back. This is just based on my own experience. Every doc is different, and so is every patient and every disease presentation.
When the tests come back, they may show a strong indication of infection, which makes the diagnosis easier. However, the tests are not perfect, and they must be read in conjunction with your symptoms and history. That's where the 'art' of medicine is important, and thus your MD's skill and experience.
I do believe that Lyme can be cured -- and in others, Lyme can be driven down to such a low level it's a functional cure. Also, one of the symptoms of Lyme is anxiety -- that nervousness and worry that just won't shut up, nagging at your brain about everything. Many if not most or all of us posting here have had anxiety, about both daily life and about Lyme. That too begins to recede when treatment takes hold. Eat well, sleep well, take your vitamins and your meds, and you'll be amazed what can happen.
Best wishes --
Lymiegirlee and JackieCalifornia,
Thank you so much for your posts. I showed my mom (the person who said I had Lyme disease the whole time) everything all of you guys have written and she was was actually very supportive and told me to go see a Lyme doctor. I do hope that my insurance will cover most of everything once I start going to a Lyme doctor. Do you think there is a possibility it will? And even if it doesn't, my health is what I should be worried about rather than how much money I'm spending. I do have a couple questions, on the first visit to my LLMD will they be able to tell me if I have Lyme disease? And will they run tests so I can know DEFINITELY if I have Lyme Disease or not? I want to be able to leave my first visit with my LLMD and know whether or not I have Lyme disease. Do you think that will be possible? I will be scheduling an appointment later this week to get in as soon as possible. Anyways, so the both of you do think that I can be cured of lymes disease if I receive treatment soon? Please wrote me back as soon as you can. And thanks again so much for your posts, I can honestly say sometimes it's the only thing that gives me hope in feeling better. Thanks again.
Thank you so much for your posts. I showed my mom (the person who said I had Lyme disease the whole time) everything all of you guys have written and she was was actually very supportive and told me to go see a Lyme doctor. I do hope that my insurance will cover most of everything once I start going to a Lyme doctor. Do you think there is a possibility it will? And even if it doesn't, my health is what I should be worried about rather than how much money I'm spending. I do have a couple questions, on the first visit to my LLMD will they be able to tell me if I have Lyme disease? And will they run tests so I can know DEFINITELY if I have Lyme Disease or not? I want to be able to leave my first visit with my LLMD and know whether or not I have Lyme disease. Do you think that will be possible? I will be scheduling an appointment later this week to get in as soon as possible. Anyways, so the both of you do think that I can be cured of lymes disease if I receive treatment soon? Please wrote me back as soon as you can. And thanks again so much for your posts, I can honestly say sometimes it's the only thing that gives me hope in feeling better. Thanks again.
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