Aa
Neurological symptoms associated with Lyme
Hello all. First of all let me give you a run down on what's been going with me. I've been having a lot of neurological symptoms for over the past year.
When I was a teenager I came down with unknown rashes with hives that would cover my chest area. Strange as it would sound these rashes and hives would leave during the day and come back at night. A year or so after the hives/rashes went away I came down with Bell's Palsy. My mom sought medical treatment for me and the neurologist said my face would return to normal within three to six months and it did, but he didnt run any test on me.
Fast forward 15 years. Almost a year ago I came down with a sudden onset of many neurological symptoms. All starting within days of each other throughout my whole entire body. Pins and needles, spasms, burning, tremors, numbness. Most of the symptoms lasting for seconds to a couple of minutes yet persistant with the exception of the tremors which are resting (feeling my body rocking at a rhythem uncontrolable back and forth) which have not gone away. Now I am having severe weakness in my legs and have been have increased migraines. Not to mention the fatigue.
I've had many neurological testing including MRI's on my brain with contrast and cervical spine. EEG, EMG and numerous bloodwork. All have come up negative.
My PCP and neurologist had been looking into MS but have ruled that out. I've also come the realization also my symptoms are symptoms of MS but dont follow in the usual pattern. I've asked for the Western Blot test to rule out Lyme, but my PCP said Lyme is not usually seen in my area.
This is my first posting here and I was wondering if any of you have had these same symptoms and if so what treatment have you sought to help cope or treat your symptoms.
When I was a teenager I came down with unknown rashes with hives that would cover my chest area. Strange as it would sound these rashes and hives would leave during the day and come back at night. A year or so after the hives/rashes went away I came down with Bell's Palsy. My mom sought medical treatment for me and the neurologist said my face would return to normal within three to six months and it did, but he didnt run any test on me.
Fast forward 15 years. Almost a year ago I came down with a sudden onset of many neurological symptoms. All starting within days of each other throughout my whole entire body. Pins and needles, spasms, burning, tremors, numbness. Most of the symptoms lasting for seconds to a couple of minutes yet persistant with the exception of the tremors which are resting (feeling my body rocking at a rhythem uncontrolable back and forth) which have not gone away. Now I am having severe weakness in my legs and have been have increased migraines. Not to mention the fatigue.
I've had many neurological testing including MRI's on my brain with contrast and cervical spine. EEG, EMG and numerous bloodwork. All have come up negative.
My PCP and neurologist had been looking into MS but have ruled that out. I've also come the realization also my symptoms are symptoms of MS but dont follow in the usual pattern. I've asked for the Western Blot test to rule out Lyme, but my PCP said Lyme is not usually seen in my area.
This is my first posting here and I was wondering if any of you have had these same symptoms and if so what treatment have you sought to help cope or treat your symptoms.
Thank you very much. I am very interested in seeing a LLMD. I have good insurance, but I have to get referals and get it approved by my insurance company which can be a pain. At this point I am open to all suggestions. Getting very dispart in finding some answers. I've had no remissions whatsoever. Always some sort of symptoms. I want to get rid of these tremors without having to be on the epilepsy meds. Thank you very much.
Welcome. There is some great information posted above. I just wanted to add that all those sudden neurological symptoms you described I have or have had too (except for the Bell's Palsy). Mine came on pretty suddenly about 6 or 7 months following 3 bullseye rashes. My story is too long to post but I also live in Ohio and I got those rashes right here in this state. My test results have been all negative as yours have been. I have been treated more than once and have responded very well to antibiotics. I was told there was no such thing as lyme in Ohio too in the past. I was recently told by an ID in this area that they see a case of lyme about every week in the office. So trust me, it is here. I've had symptoms off and on for 17 years. I've had long periods of symptoms as well as remissions. Feel free to send me a PM if you are interested in seeing a LLMD.
Thank you very much for helping enlighten me and encouraging me. I've been through so much this past year. I have to find out what is going on with me and wont stop until I have some answers. I'm looking into doing some more indepth research and will not only look on the websites above, but will also call them too. I'm worried the nerve damage I am occuring will be permanent.
Thank both of you very much. I will keep the both of you posted.
Thank both of you very much. I will keep the both of you posted.
Well, JackieCalifornia already gave you the tour! Very good advice.
I can relate to your situation. My Lyme presented with neurological symptoms for the first year +. Since I don't recall a tick bite in my life, and since I didn't have the EM or bull's eye rash, Lyme never got much consideration from me or my doctors. I tested negative on the ELISA test, twice, in Jan. and Jul. '08.
I had an abnormal MRI with "non-specific" lesions, and my PCP kept saying my symptoms sounded neurological. Thinking that Lyme had been properly ruled out, I went from neuro to neuro, with trips back to my PCP in between. I had a 2nd MRI and a lumbar puncture. When the LP came back negative and the MRI didn't change, I was suddenly told that "maybe it's fibro" by one neuro, and to "wait and see, repeat the MRI again in 6 months" by another. Yet by that time, I had so many symptoms and problems that my illness was wreaking havoc on my life.
My PCP decided to put me on steroids, which weaken in the immune system and thus are totally wrong for Lyme. I got a lot better for about a week, then got sicker than I'd ever been. I developed lots of joint problems, extreme fatigue, and nausea. (I saw a rheumatologist around this time who was convinced that I had RA or lupus, but when the tests came back negative, she also put her hands in the air.)
It finally hit me that maybe those negative ELISA tests weren't good enough to rule out Lyme. I asked my PCP again about Lyme, requesting a Western blot, only she refused to test me. She said she was worried about a false positive, but I think she was worried about covering her rear end since she blindly put me on the steroids....
Anyway, as JackieCalifornia mentioned, I found an LLMD and made an appointment. I started treatment. I read "Cure Unknown" and watched "Under Our Skin."
Lyme is very confusing because the two factions agree on nothing and I feel that either side is too extreme for me. But I've learned that lots of patients are caught in the middle and just trying to get well.
Bottom line, a Lyme diagnosis and treatment don't always come to you, it often requires a leap of faith on the patient's part. And that is not how we are used to navigating the medical system. It made me very uncomfortable, because all 4 of my neuros, my PCP, and my rheumatologist all strongly denied that I could have Lyme. Yet here I am, 4 months into treatment and starting to get better.
I'm glad you've already taken the step of re-questioning what is happening to your health. We of course can't tell if you have Lyme or not, but hopefully can offer advice to help get to the bottom of things.
I can relate to your situation. My Lyme presented with neurological symptoms for the first year +. Since I don't recall a tick bite in my life, and since I didn't have the EM or bull's eye rash, Lyme never got much consideration from me or my doctors. I tested negative on the ELISA test, twice, in Jan. and Jul. '08.
I had an abnormal MRI with "non-specific" lesions, and my PCP kept saying my symptoms sounded neurological. Thinking that Lyme had been properly ruled out, I went from neuro to neuro, with trips back to my PCP in between. I had a 2nd MRI and a lumbar puncture. When the LP came back negative and the MRI didn't change, I was suddenly told that "maybe it's fibro" by one neuro, and to "wait and see, repeat the MRI again in 6 months" by another. Yet by that time, I had so many symptoms and problems that my illness was wreaking havoc on my life.
My PCP decided to put me on steroids, which weaken in the immune system and thus are totally wrong for Lyme. I got a lot better for about a week, then got sicker than I'd ever been. I developed lots of joint problems, extreme fatigue, and nausea. (I saw a rheumatologist around this time who was convinced that I had RA or lupus, but when the tests came back negative, she also put her hands in the air.)
It finally hit me that maybe those negative ELISA tests weren't good enough to rule out Lyme. I asked my PCP again about Lyme, requesting a Western blot, only she refused to test me. She said she was worried about a false positive, but I think she was worried about covering her rear end since she blindly put me on the steroids....
Anyway, as JackieCalifornia mentioned, I found an LLMD and made an appointment. I started treatment. I read "Cure Unknown" and watched "Under Our Skin."
Lyme is very confusing because the two factions agree on nothing and I feel that either side is too extreme for me. But I've learned that lots of patients are caught in the middle and just trying to get well.
Bottom line, a Lyme diagnosis and treatment don't always come to you, it often requires a leap of faith on the patient's part. And that is not how we are used to navigating the medical system. It made me very uncomfortable, because all 4 of my neuros, my PCP, and my rheumatologist all strongly denied that I could have Lyme. Yet here I am, 4 months into treatment and starting to get better.
I'm glad you've already taken the step of re-questioning what is happening to your health. We of course can't tell if you have Lyme or not, but hopefully can offer advice to help get to the bottom of things.
Correction: the book Cure Unknown I mention above is by PAMELA Weintraub (not L. Weintraub).
Hi, welcome to the Lyme crowd.
Your wanderings from doctor to doctor and being told 'no Lyme here' are common themes among us on this listserv. Neurologists are famous for not 'believing' in Lyme, and most PCPs don't have an interest in Lyme and so don't look into it.
The real difficulty is that there is a split in the medical community about where Lyme occurs geographically, what the symptoms are, what tests are reliable to diagnose or rule it out, and what treatment is reasonable. In other words, there is a war going on, and the patients are caught in the middle.
Lyme is pretty much all over the US and Canada at this point. The tests that are usually given (ELISA and Western Blot) are only partly accurate, and the initial signs of a tick bite and a circular rash at not seen in perhaps half of all those with Lyme. There are other diseases that the same ticks carry, which diseases have to be tested for specially, which most doctors don't do. And the coup de grace is that uninformed doctors often limit treatment to 2 to 4 weeks of antibiotics, while much longer is often warranted due to the persistent nature of Lyme bacteria. There is a long history of this disease war in the medical community, which I won't bore you with here, but it you're interested, there's a 2008 book called Cure Unknown by L. Weintraub which tells the whole story. There's also a recent film out called Under Our Skin and they have a website.
Other than that, Lyme is a snap to deal with. /sarc
Symptoms are variable among patients and over time in a single patient, and the things you describe are not out of line with what many others have posted here and elsewhere.
There is a group called IDSA (Infectious Disease Society of America) which uses standards of diagnosis and treatment of Lyme which the CDC (Center for Disease Control) in Atlanta supports. These are the standards that make Lyme sound like a minor annoyance that goes away easily, and if it doesn't, then the patient has 'other issues' if you get my drift, as in between your ears.
The competing organization, ILADS (International Lyme and Associated Diseases Society) is 180 degrees in many things from IDSA. These are the drs who diagnose and treat based on symptoms and test results, and treat until resolution of symptoms, not until 2 to 4 wks of antiobiotics have been dispensed.
Check the IDSA and ILADS websites and you'll get the flavor.
There is a term you will hear, "LLMD", which is slang for Lyme-Literate Medical Doctor, meaning a dr who tends toward the ILADS construct, but not all of them do. The patients all have different manifestations of symptoms, and the LLMDs all take different treatment approaches as is appropriate to a mysterious disease still under investigation.
See what other advice you get here, but I'm guessing that you will be urged to find an LLMD in your area and go see him/her at the earliest opportunity.
Best wishes to you -- you're always welcome to stop by here for some solace and laypersons' advice from the trenches --
Your wanderings from doctor to doctor and being told 'no Lyme here' are common themes among us on this listserv. Neurologists are famous for not 'believing' in Lyme, and most PCPs don't have an interest in Lyme and so don't look into it.
The real difficulty is that there is a split in the medical community about where Lyme occurs geographically, what the symptoms are, what tests are reliable to diagnose or rule it out, and what treatment is reasonable. In other words, there is a war going on, and the patients are caught in the middle.
Lyme is pretty much all over the US and Canada at this point. The tests that are usually given (ELISA and Western Blot) are only partly accurate, and the initial signs of a tick bite and a circular rash at not seen in perhaps half of all those with Lyme. There are other diseases that the same ticks carry, which diseases have to be tested for specially, which most doctors don't do. And the coup de grace is that uninformed doctors often limit treatment to 2 to 4 weeks of antibiotics, while much longer is often warranted due to the persistent nature of Lyme bacteria. There is a long history of this disease war in the medical community, which I won't bore you with here, but it you're interested, there's a 2008 book called Cure Unknown by L. Weintraub which tells the whole story. There's also a recent film out called Under Our Skin and they have a website.
Other than that, Lyme is a snap to deal with. /sarc
Symptoms are variable among patients and over time in a single patient, and the things you describe are not out of line with what many others have posted here and elsewhere.
There is a group called IDSA (Infectious Disease Society of America) which uses standards of diagnosis and treatment of Lyme which the CDC (Center for Disease Control) in Atlanta supports. These are the standards that make Lyme sound like a minor annoyance that goes away easily, and if it doesn't, then the patient has 'other issues' if you get my drift, as in between your ears.
The competing organization, ILADS (International Lyme and Associated Diseases Society) is 180 degrees in many things from IDSA. These are the drs who diagnose and treat based on symptoms and test results, and treat until resolution of symptoms, not until 2 to 4 wks of antiobiotics have been dispensed.
Check the IDSA and ILADS websites and you'll get the flavor.
There is a term you will hear, "LLMD", which is slang for Lyme-Literate Medical Doctor, meaning a dr who tends toward the ILADS construct, but not all of them do. The patients all have different manifestations of symptoms, and the LLMDs all take different treatment approaches as is appropriate to a mysterious disease still under investigation.
See what other advice you get here, but I'm guessing that you will be urged to find an LLMD in your area and go see him/her at the earliest opportunity.
Best wishes to you -- you're always welcome to stop by here for some solace and laypersons' advice from the trenches --
Have an Answer?
You are reading content posted in the Lyme Disease Community
Fearing autism, many parents aren't vaccinating their kids. Can doctors reverse this dangerous trend?
Can HIV be transmitted through this sexual activity? Dr. Jose Gonzalez-Garcia answers this commonly-asked question.
A breakthrough study discovers how to reduce risk of HIV transmission by 95 percent.
Dr. Jose Gonzalez-Garcia provides insight to the most commonly asked question about the transfer of HIV between partners.
Before your drop a dime at the pharmacy, find out if these popular cold and flu home remedies are a wonder or a waste
Fend off colds and the flu with these disease-fighting foods
