Aa
I may be right about my MS and LYME soo confusing
I was persistant and didnt let no doctors tell me other wise. I had neg. tests for Lyme about 3 times (generic ones) and i almost gave up hope and let it go. But i new deep down this is not right and this is not how MS feels ( due to the fact i read about it and from what i read bout what you guys say ) and it just didnt fit me.Alot fit me but Alot also didnt and it drove me crazy and would not let it go to i found out why....
So i took one last test and decided that will be it . And what do you know I tested CDC positive IGM wich can indicate reineftection or long term infection of lyme but had a CDC negative on my IGG but Ignenex POSITIVE on my IGG only needed two more + to be CDC positive.... I read many patients are only IGM positive and become IGG postive after antibiotics..... I dont know what this all means and am confused and dont know if i have 2 diseases or just if it has been lyme all the time. I was bit and got sick and noone listened and that makes me want to scream. So i dont know i just needed to type so many thoughts are going in my mind, Is this really LYME or is it just MS or is it BOTH, was I misdaignosed, or are the test wrong ... if its both ill be fine with that cause i can treat the lyme and if MS is half as bad of what i been going through i'm all for it and can definalty deal with it and accept it alot better without the lyme running wild through me!
Thanks for listening guys and reading my past questions about symptoms that dont fit and reinforcing they dont fit! Helped me keep fighting for the truth!
My ID will be calling to interpretate the results better and also will call a LLMD (lyme literate medical doctor) to see what he says also more an likely start antibiotics ( since i am postive for lyme disease(borrelia burgdorferi) in my IGM) and get tested in 4 weeks and see if i'm also IGG postive
This is insane!
So i took one last test and decided that will be it . And what do you know I tested CDC positive IGM wich can indicate reineftection or long term infection of lyme but had a CDC negative on my IGG but Ignenex POSITIVE on my IGG only needed two more + to be CDC positive.... I read many patients are only IGM positive and become IGG postive after antibiotics..... I dont know what this all means and am confused and dont know if i have 2 diseases or just if it has been lyme all the time. I was bit and got sick and noone listened and that makes me want to scream. So i dont know i just needed to type so many thoughts are going in my mind, Is this really LYME or is it just MS or is it BOTH, was I misdaignosed, or are the test wrong ... if its both ill be fine with that cause i can treat the lyme and if MS is half as bad of what i been going through i'm all for it and can definalty deal with it and accept it alot better without the lyme running wild through me!
Thanks for listening guys and reading my past questions about symptoms that dont fit and reinforcing they dont fit! Helped me keep fighting for the truth!
My ID will be calling to interpretate the results better and also will call a LLMD (lyme literate medical doctor) to see what he says also more an likely start antibiotics ( since i am postive for lyme disease(borrelia burgdorferi) in my IGM) and get tested in 4 weeks and see if i'm also IGG postive
This is insane!
Erin
Have watched posts before replying further.
If you've read the Lyme Disease forum and done other websearches, you have probably found that the treatment of Lyme Disease is highly controversial. My son has been infected 4 times now. The first time was when he was 7 years old and was not diagnosed until probably 9 months later. Fortunately, the recommended 1 month treatment of antibiotics seemed to work.
His second case was diagnosed in December 2006 and exposure could have been anywhere from 5 to 9 months earlier. He did not respond to 2 courses of oral antibiotics and had severe Herxheimer reactions while on medication. I noticed neurological symptoms in September 2007 and he went on IV antibiotics, only to end up with a PICC line infection, which was caught very quickly, but still ended up hospitalized.
I say this to caution you to use your best judgement in terms of treatment, if in fact you do have Lyme. It is a bacterial infection and by all rights, antibiotics should clear the disease. Technical studies indicate that the bacteria does have a tendancy to mutuate, which may render proscribed antibiotics ineffective. My dad is a retired analytical research chemist who specialized in antibiotics and thus I have a healthy respect for the indiscriminate use of antibiotics. I did not want to see my son on prolonged courses of antibiotics without a justified reason.
Research neither helped me nor my father in terms of coming to a conclusion in terms of the best approach towards treatment. Because of the divided camps out there in terms of treatment, it is confusing and very important to find a doctor with whom you can have open discussions, especially when it comes to the approach towards treatment.
I wish you well.
And to anyone else in tick country, please use tick spray! My kid finally did it this past weekend for the first time after years of me badgering. Maybe he's growing up after all?
Have watched posts before replying further.
If you've read the Lyme Disease forum and done other websearches, you have probably found that the treatment of Lyme Disease is highly controversial. My son has been infected 4 times now. The first time was when he was 7 years old and was not diagnosed until probably 9 months later. Fortunately, the recommended 1 month treatment of antibiotics seemed to work.
His second case was diagnosed in December 2006 and exposure could have been anywhere from 5 to 9 months earlier. He did not respond to 2 courses of oral antibiotics and had severe Herxheimer reactions while on medication. I noticed neurological symptoms in September 2007 and he went on IV antibiotics, only to end up with a PICC line infection, which was caught very quickly, but still ended up hospitalized.
I say this to caution you to use your best judgement in terms of treatment, if in fact you do have Lyme. It is a bacterial infection and by all rights, antibiotics should clear the disease. Technical studies indicate that the bacteria does have a tendancy to mutuate, which may render proscribed antibiotics ineffective. My dad is a retired analytical research chemist who specialized in antibiotics and thus I have a healthy respect for the indiscriminate use of antibiotics. I did not want to see my son on prolonged courses of antibiotics without a justified reason.
Research neither helped me nor my father in terms of coming to a conclusion in terms of the best approach towards treatment. Because of the divided camps out there in terms of treatment, it is confusing and very important to find a doctor with whom you can have open discussions, especially when it comes to the approach towards treatment.
I wish you well.
And to anyone else in tick country, please use tick spray! My kid finally did it this past weekend for the first time after years of me badgering. Maybe he's growing up after all?
Dear ErinZoe23,
Thanks for the moral support and the encouragement. I like your humor!!
After already spending so much $$ on tests, I'm just kinda licking my wounds for now. Maybe I should try another infectious disease specialist. But it's been like tossing my money down a rat hole. Can't get motivated to do more. May try outside the country when I make my next move. Oddly, that can actually be cheaper (including travel fare and lodging) than evaluation in the US!
Best of luck to you - glad you got your answer.
By the way, how did you find your MD who finally listened and got you some results?
WAF
Thanks for the moral support and the encouragement. I like your humor!!
After already spending so much $$ on tests, I'm just kinda licking my wounds for now. Maybe I should try another infectious disease specialist. But it's been like tossing my money down a rat hole. Can't get motivated to do more. May try outside the country when I make my next move. Oddly, that can actually be cheaper (including travel fare and lodging) than evaluation in the US!
Best of luck to you - glad you got your answer.
By the way, how did you find your MD who finally listened and got you some results?
WAF
LOL shell yes i will be staying with you all! An keeping you updated! I also belive people can have both. Actaully sounds very realistic you know? Just cause you have MS dont mean u cant get bit by tick that has lyme! It be kinda funny if you have MS and a tick gets on you and then just dropped off dead cause you have MS! lol
Weakandfalling I understand your frustration totally. You say you tested positive for lyme ..did you start treatment? You do not want an ID norally to treat you, Everyone i have talked to go to LLMD's some expensive some not so much but they are the ones that care and take low positives seriously.
I never switched any docotors besides my PCP i just wanted to smack some reality into him..so i had to move on from him cause i could seriously see myself blowing up in his face. My MS specialist has also made me mad from the very first appointment where i told him i think i have lyme and you need to look further into it and he told me "noone in pittsburgh has lyme and theres like a 5 percent people with MS are misdiagnosed" and all i was thinking was well " hey doc nice to meet you im the god damn 5 percent" lol Cant wait to see him again and now be able to say " im the mircaculous pittsburgh girl who has lyme you know since lyme aint in pittsburgh and all doc" And maybe then when a new patient comes to him and suspects more is wrong he will listen and dig deeper. But he is a nice guy just the system i belive has got to him.
Dont give up hope tho. We are all we got in this world. You got to fight and trust me the day before i got all this news i wrote a Journal on "not wanting to hope no more" for all the let downs and struggles were just getting to be to much to bare.
But i definalty agree with you american medicine well not medicine american doctors need a firecracker up there bum to get them moving. they need like a special extra 10 yrs of training for just common sense and listening. It took me a year to get my answer and i think i did good there could of been alot longer and definalty would of been alot longer without the internet and this forum. I would be here with MS thinking all these odd symptoms were just the MS acting weird and out of place everyday and never knowing lyme is in me so once again have to thank you all again!
And also weakandfalling if u had a positive for lyme dont let that go get an llmd and dont matter if its weak or strong if you have the bands in you that shows the little critter in you then you obviously have it. I will be dishing out now either 200 to 500 ( i certainly dont have the money I'm only 23 and ahvent been able to workin a year but my parents are helping me and i will pay them back i feel so bad for taking there money they dont got much either) an apoointment once i pick wich one i want. I know its expensive and ridiculouse actually but the laws arent gonna change overnight and we got to deal with that part of it somehow Good Luck to you also i know we both will need it but DONT GIVE UP theres no point in that if we stop fighting then what do we have left? We'll end up losing ourselfs
Weakandfalling I understand your frustration totally. You say you tested positive for lyme ..did you start treatment? You do not want an ID norally to treat you, Everyone i have talked to go to LLMD's some expensive some not so much but they are the ones that care and take low positives seriously.
I never switched any docotors besides my PCP i just wanted to smack some reality into him..so i had to move on from him cause i could seriously see myself blowing up in his face. My MS specialist has also made me mad from the very first appointment where i told him i think i have lyme and you need to look further into it and he told me "noone in pittsburgh has lyme and theres like a 5 percent people with MS are misdiagnosed" and all i was thinking was well " hey doc nice to meet you im the god damn 5 percent" lol Cant wait to see him again and now be able to say " im the mircaculous pittsburgh girl who has lyme you know since lyme aint in pittsburgh and all doc" And maybe then when a new patient comes to him and suspects more is wrong he will listen and dig deeper. But he is a nice guy just the system i belive has got to him.
Dont give up hope tho. We are all we got in this world. You got to fight and trust me the day before i got all this news i wrote a Journal on "not wanting to hope no more" for all the let downs and struggles were just getting to be to much to bare.
But i definalty agree with you american medicine well not medicine american doctors need a firecracker up there bum to get them moving. they need like a special extra 10 yrs of training for just common sense and listening. It took me a year to get my answer and i think i did good there could of been alot longer and definalty would of been alot longer without the internet and this forum. I would be here with MS thinking all these odd symptoms were just the MS acting weird and out of place everyday and never knowing lyme is in me so once again have to thank you all again!
And also weakandfalling if u had a positive for lyme dont let that go get an llmd and dont matter if its weak or strong if you have the bands in you that shows the little critter in you then you obviously have it. I will be dishing out now either 200 to 500 ( i certainly dont have the money I'm only 23 and ahvent been able to workin a year but my parents are helping me and i will pay them back i feel so bad for taking there money they dont got much either) an apoointment once i pick wich one i want. I know its expensive and ridiculouse actually but the laws arent gonna change overnight and we got to deal with that part of it somehow Good Luck to you also i know we both will need it but DONT GIVE UP theres no point in that if we stop fighting then what do we have left? We'll end up losing ourselfs
Dear ErinZoe23,
Good luck to you! You're gonna need it since it seems that only about 10% of our American MDs actually care. The rest just take our money and don't half try.
I was just dropped by my primary MD after giving him corrections to a couple of consultants' reports (in my file) who had falsified and omitted significant information on their write-ups of their physical exams of me - leaving out my totally positive Romberg's, my inability to heel-to-toe walk etc. They had essentially called my abnormal neuro exams "normal" which was anything but truthful! My primary MD, incensed that I was such a participant in researching and keeping tabs on my condition, felt that meant I didn't trust him (actually I had thought he was a pretty good and caring MD) so he dropped me.
Seriously, I am considering going outside the country for evaluation. Don't think you can get an honest neuro evaluation here due to possible governmental interference and just general widespread medical disinterest (in anything except your money).
Like you, through multitudinous pricey tests, I have narrowed my life-altering symptoms down to a few conditions: MS, ALS, or Lyme. Like you, I have had negative Lyme tests, but then my MD decided to try one more Lyme test (because he had seen so many conflicting Lyme test results on the same patients - it seems to be a very, very unreliable test) and, what do you know, my test was actually a low-positive. So he referred me to an infectious disease "specialist" who turned out to be just another disinterested highly-credentialed fool who told me, without ever leaving his comfy chair, that I could not have Lyme because Lyme is not a "chronic disease" and I had had my symptoms for so long.
I've actually reached the point where I would accept a brain biopsy to determine, for sure, what it is I have. They say that really the only true determination of MS is on autopsy. I have felt so bad for so long, I would be willing to risk a little more brain damage for a definitive answer.
Like Quixotic1, I have been treated as though I were a malingerer, a crock, not listened to, etc. Like Quixotic1, I had one bright UBO on my brain MRI that I was told was "normal for age." Like Quioxotic1, I have been told I'm too old for MS. I've paid for CDs to be converted to films, but then the MD didn't even care to take the time to look at them. Our American medical scene has become truly bizarre now.
One lady, just diagnosed at 66 or 67, also received similar abuse from her MDs as what I have described. She said that the radiologist who finally diagnosed her with MS informed her that most radiologists, when they see an advanced age (which is clearly stated on MRI films), will never call it MS even if the lesions are textbook-perfect for MS. Instead, they call it "microvascular disease." I happen to know that this is absolutely true.
I've stayed away from this wonderful forum for quite a while, just totally discouraged and licking my wounds. My funds are not unlimited. I've already paid enough that I should have an answer by now. Totally fed up with American medicine!
So good luck to you. You're gonna need it in this country!!
Weakandfalling
Good luck to you! You're gonna need it since it seems that only about 10% of our American MDs actually care. The rest just take our money and don't half try.
I was just dropped by my primary MD after giving him corrections to a couple of consultants' reports (in my file) who had falsified and omitted significant information on their write-ups of their physical exams of me - leaving out my totally positive Romberg's, my inability to heel-to-toe walk etc. They had essentially called my abnormal neuro exams "normal" which was anything but truthful! My primary MD, incensed that I was such a participant in researching and keeping tabs on my condition, felt that meant I didn't trust him (actually I had thought he was a pretty good and caring MD) so he dropped me.
Seriously, I am considering going outside the country for evaluation. Don't think you can get an honest neuro evaluation here due to possible governmental interference and just general widespread medical disinterest (in anything except your money).
Like you, through multitudinous pricey tests, I have narrowed my life-altering symptoms down to a few conditions: MS, ALS, or Lyme. Like you, I have had negative Lyme tests, but then my MD decided to try one more Lyme test (because he had seen so many conflicting Lyme test results on the same patients - it seems to be a very, very unreliable test) and, what do you know, my test was actually a low-positive. So he referred me to an infectious disease "specialist" who turned out to be just another disinterested highly-credentialed fool who told me, without ever leaving his comfy chair, that I could not have Lyme because Lyme is not a "chronic disease" and I had had my symptoms for so long.
I've actually reached the point where I would accept a brain biopsy to determine, for sure, what it is I have. They say that really the only true determination of MS is on autopsy. I have felt so bad for so long, I would be willing to risk a little more brain damage for a definitive answer.
Like Quixotic1, I have been treated as though I were a malingerer, a crock, not listened to, etc. Like Quixotic1, I had one bright UBO on my brain MRI that I was told was "normal for age." Like Quioxotic1, I have been told I'm too old for MS. I've paid for CDs to be converted to films, but then the MD didn't even care to take the time to look at them. Our American medical scene has become truly bizarre now.
One lady, just diagnosed at 66 or 67, also received similar abuse from her MDs as what I have described. She said that the radiologist who finally diagnosed her with MS informed her that most radiologists, when they see an advanced age (which is clearly stated on MRI films), will never call it MS even if the lesions are textbook-perfect for MS. Instead, they call it "microvascular disease." I happen to know that this is absolutely true.
I've stayed away from this wonderful forum for quite a while, just totally discouraged and licking my wounds. My funds are not unlimited. I've already paid enough that I should have an answer by now. Totally fed up with American medicine!
So good luck to you. You're gonna need it in this country!!
Weakandfalling
WOW! Wow! You are a fighter!
I'm so very proud of your persistance. I'm a believer that you can def. have both. Especially where I'm from. Tic heaven! And, your battle has just begun!
Your not going anywhere right? You staying on w/us? I hope so - otherwise will have to put out the MOB squad.
Thank you, for thanking us too btw, very nice of you!
-Shell
I'm so very proud of your persistance. I'm a believer that you can def. have both. Especially where I'm from. Tic heaven! And, your battle has just begun!
Your not going anywhere right? You staying on w/us? I hope so - otherwise will have to put out the MOB squad.
Thank you, for thanking us too btw, very nice of you!
-Shell
Thanks lulu! You have been one of my great helps on this page! Thanks for the support!
I'm ready for the fight just the hope knowing it could all of just been lyme this whole time and could be beat in a year or two or alot more make me even more motivated to fight!
And yes the lyme forum is excellent ive been posting on there ever since i had doubt! I think you or someone else along time ago recomended it!
I dont think ill ever stop my MS medicine lol cause i dont think ill ever know for sure if i really dont have it you know? unless all the lesions miraculousy disappear and have no symptoms what so ever after treatment and dont return for like 5 years then i may think of stopping but probaly not lol alot to talk about to the doctors!
I'm ready for the fight just the hope knowing it could all of just been lyme this whole time and could be beat in a year or two or alot more make me even more motivated to fight!
And yes the lyme forum is excellent ive been posting on there ever since i had doubt! I think you or someone else along time ago recomended it!
I dont think ill ever stop my MS medicine lol cause i dont think ill ever know for sure if i really dont have it you know? unless all the lesions miraculousy disappear and have no symptoms what so ever after treatment and dont return for like 5 years then i may think of stopping but probaly not lol alot to talk about to the doctors!
Erin, This really could be good news - although treating Lyme Disease doesn't happen overnight. Some people will take years to get better, but at least there is the opportunity to beat this.
There is an EXCELLENT Lyme forum here and I know they can answer all sorts of questions. Lyme is often confused for MS - there are so many similar symptoms.
I'm so glad to hear you are getting some answers - finally! And thanks for reinforcing the message that we are our own best advocates.
be well, Lulu
There is an EXCELLENT Lyme forum here and I know they can answer all sorts of questions. Lyme is often confused for MS - there are so many similar symptoms.
I'm so glad to hear you are getting some answers - finally! And thanks for reinforcing the message that we are our own best advocates.
be well, Lulu
Thanks audrey I messed that IgG and IgM part up! Just googled it and pretty happy about that you and google stated IgM means early infection or acute infection..thought it was long term infection! Ive been going through this for a year and am soo ready to get rid of this!
Thank you for your insight on the test and any other suggestions/advice you have i would love to hear!
Thank you for your insight on the test and any other suggestions/advice you have i would love to hear!
My son has had Lyme Disease 4 times, so I am very familiar with the Western Blot test.
The IgM bands are used to diagnose a new or recent infection. One needs 5 reactive IgM bands and for a positive diagnosis of Lyme Disease. Some people who are infected with Lyme may not test positive for several weeks, which is why the CDC has changed its recommendation to give a one week course of antibiotics if bitten by a deer tick.
The IgM bands can stay reactive for 6 months after treatment. Older literature suggests they can stay active for years, however neurologists today generally view this as a new infection and will treat with antibiotics.
The IgG bands show prior infection. It is not known how long they can remain active.
The IgM bands are used to diagnose a new or recent infection. One needs 5 reactive IgM bands and for a positive diagnosis of Lyme Disease. Some people who are infected with Lyme may not test positive for several weeks, which is why the CDC has changed its recommendation to give a one week course of antibiotics if bitten by a deer tick.
The IgM bands can stay reactive for 6 months after treatment. Older literature suggests they can stay active for years, however neurologists today generally view this as a new infection and will treat with antibiotics.
The IgG bands show prior infection. It is not known how long they can remain active.
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
