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How to Freak Out your Neurologist.
I had an appointment with Neuro #1 yesterday. It has been over 3 months since I have seen him and I when I told him that I had a positive WB for lyme & was having an LP ordered by my GP, he became incredibly animated! He moved up my MRI and ordered a new VEP and then insisted that he order the LP himself and kinda went off about it all. (I think he was insulted that I had someone else order it??) He then said that if theses tests don't show anything that he will send me to the Mayo Clinic in Rochester. GEEEZZZ, last time I saw him I got the "don't come back early for your next appointment speech".
This time I got the "You don't have lyme" speech and how every test is unreliable and there are too many false positives, and how there are a lot of people walking around that are diagnosed w/lyme but have something else, and you don't want lyme disease, etc. etc. OH WELL, at least I got my MRI moved up and he will be doing the LP so it will just cost me the office visit fee. He did say he would test the CSF for lyme. (AND his nurse knew the correct pre-LP instructions )
I am hoping these tests will clear things up and not do the opposite. He told me a story about how he has diagnosed some people w/Parkinsons, but it isn't exactly Parkinsons but something Parkinson-like. Some things aren't always cut and dried. I woke up this morning wondering if he was alluding to me and MS?
Maybe all these doctors think it is MS and maybe that is their motivation for discounting the lyme test. I really don't know of any other test that so many doctors would just ignore and totally discount. What's the deal here??
I just want to feel like I have done everything possible to NOT overlook MS before I really start antibiotics for lyme.
I don't know if I have read any good stories here about the Mayo Clinic. I know I am not going to spend $15000 for someone to tell me that they don't know either.
He also had the "guard against making symptoms worse by thinking about them" speech. He always has to tell me that my trump card is my MRI, it isn't the worst one that he has seen but it is definitely not normal and that I have to be taken seriously because of it. Gee, I guess I am the "lucky" one that doesn't have to hear that I have a psychological problem, but then again I have 13 lesions in my brain. This is all so stupid! I ALMOST feel like I am back in limbo. I am tired of being a patient & having to deal w/all this because when it really boils down to it the doctors just don't know everything and we're the ones left to live w/unexplained symptoms!! I (like everyone else here) wants to move forward with my life and feel better!
Sorry to ramble on here. I couldn't sleep last night and feel really weird today. Thanks for listening,
Stacey
This time I got the "You don't have lyme" speech and how every test is unreliable and there are too many false positives, and how there are a lot of people walking around that are diagnosed w/lyme but have something else, and you don't want lyme disease, etc. etc. OH WELL, at least I got my MRI moved up and he will be doing the LP so it will just cost me the office visit fee. He did say he would test the CSF for lyme. (AND his nurse knew the correct pre-LP instructions )
I am hoping these tests will clear things up and not do the opposite. He told me a story about how he has diagnosed some people w/Parkinsons, but it isn't exactly Parkinsons but something Parkinson-like. Some things aren't always cut and dried. I woke up this morning wondering if he was alluding to me and MS?
Maybe all these doctors think it is MS and maybe that is their motivation for discounting the lyme test. I really don't know of any other test that so many doctors would just ignore and totally discount. What's the deal here??
I just want to feel like I have done everything possible to NOT overlook MS before I really start antibiotics for lyme.
I don't know if I have read any good stories here about the Mayo Clinic. I know I am not going to spend $15000 for someone to tell me that they don't know either.
He also had the "guard against making symptoms worse by thinking about them" speech. He always has to tell me that my trump card is my MRI, it isn't the worst one that he has seen but it is definitely not normal and that I have to be taken seriously because of it. Gee, I guess I am the "lucky" one that doesn't have to hear that I have a psychological problem, but then again I have 13 lesions in my brain. This is all so stupid! I ALMOST feel like I am back in limbo. I am tired of being a patient & having to deal w/all this because when it really boils down to it the doctors just don't know everything and we're the ones left to live w/unexplained symptoms!! I (like everyone else here) wants to move forward with my life and feel better!
Sorry to ramble on here. I couldn't sleep last night and feel really weird today. Thanks for listening,
Stacey
Sheeeeesh!!!!! I bet you knew this would bring me off me sick bed!!! Actually, I'm feeling better today.
NO!!!!!!!!!!!!!! breath !!!!!!!!!!!!!! the "Trump Card" is NOT the MRI, Dear Sir!! The trump card is what the patient is going through! (I'm going to wear out the "!!" key here.) It is the patient's symptoms and disabilities that bring her/him to the doctor! It is those same problems that initiate the workup. It is the continuation of those problems that let the doctor know that something is continuing to happen!
A NEGATIVE MRI DOES NOT EQUAL A NORMAL BRAIN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!1
Yes, it is reassuring that there are no large lesions, no tumors, no increased intracranial pressure, and gives some reassurance that MS is much less likely, but it does NOT MEAN THAT THERE IS NOTHING GOING ON !!!!!!!!!! Am I shouting loud enough for the medical profession to hear me? Ya think?
Actually it is controversial whether Lyme is over diagnosed or under-diagnosed. If you think about it; if the tests for it are unreliable, then you are going to miss people who have it and diagnose people who don't. If you never consider it in your differential diagnosis then you'll never find it. If you don't believe, in this day of instant mobility from one place to another, that it can't and never will, occur in your area then you'll never look for it and you will likely miss some. If you only use the ELISA test, which is the one every lab normally runs when Lyme titers are ordered, then even the CDC admits their are too many false-negatives; you'll miss it.
So, my take on it, is that Lyme is likely under-diagnosed. If a person has a suggestive or postive Western Blot, then a course of antibiotics is only proper, safe, and good medicine. Once the LP is done, the antibiotics will NOT change any of the rest of the work -up for MS. Do I believe that Lyme takes years of antibiotics to treat? No, I don't. IMO, the studies showing that the vast majority are cured with 3 to 8 weeks are good.
Now, the LP will not show if you have Lyme or not. If anything, it will show if the Lyme spirochete has invaded your brain causing the lesions. The best way to determine that is to do a PCR on the spinal fluid for the Lyme DNA to check for the actual presence of Lyme "past" the blood-brain barrier". That would mandate the longer use of antibiotics.
So, I would have you take the antibiotics for a month (continuous) at least. The ones your GP gave you. When you stop antibiotics before the bugger is all killed they can grow back, so you need to start all over after the LP.
If you improved when you started the antibiotics, yes, you might have a little placebo going on, because "hope" (that you might soon be better) is a powerful stimulant for endorphins. That's great! But also, antibiotics could have been killing off the cause of the problem; it could improve peripheral nerve infection. Lyme infects the peripheral nervous system very quickly, and might improve quickly. Lyme that is actually IN the brain and spinal cord needs more aggressive and longer therapy (2 months +/- ).
But, doxycycline (isn't that what you're on?) also exerts an anti-inflammatory effect throughout the body, not just an anti-infective effect. There was a study a year or so ago that showed improvement in lesions in MS when treated with doxycycline alone (I have to look this up to be sure). Of course one group of people believed that this was because the antibiotic was actually treating a Lyme infection. The researchers believed that it was the effect on the patients' immune systems.
I don't see any reason why you can't be on antibiotics for a couple months for lyme disease while they are finishing the work up for MS.
As for the neuro finally getting animated....well, suddenly someone is looking over his shoulder! He better cross all his "t's". Sheeehs!
Remember, everyone; one of the things you can do to get a neuro to move along (sometimes) is to mention that a member of the family or a close friend, who is also a physician, (that would be me. Your families like me okay, don't they?) has mentioned to you that your symptoms are suggestive of MS and that they recommend this that or the other. If you are in need of an LP, a spinal MRI, or a VEP or something, have a someone else write it on a piece of paper along with other "thoughts" and refer to it during a visit. Knowing that another doctor is commenting on the case will often get a wishy-washy doc off their duff!
Finally, and we've talked about this before. Focusing all your attention on symptoms will make them worse. But only in the rare case of a true hypochondriac that imagines every symptom that fits their fear, will people create true symptoms that look like MS.
The trump card is what the patient is going through and experiencing!
President and Founder of ON-AND-ON ANON
Quix
NO!!!!!!!!!!!!!! breath !!!!!!!!!!!!!! the "Trump Card" is NOT the MRI, Dear Sir!! The trump card is what the patient is going through! (I'm going to wear out the "!!" key here.) It is the patient's symptoms and disabilities that bring her/him to the doctor! It is those same problems that initiate the workup. It is the continuation of those problems that let the doctor know that something is continuing to happen!
A NEGATIVE MRI DOES NOT EQUAL A NORMAL BRAIN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!1
Yes, it is reassuring that there are no large lesions, no tumors, no increased intracranial pressure, and gives some reassurance that MS is much less likely, but it does NOT MEAN THAT THERE IS NOTHING GOING ON !!!!!!!!!! Am I shouting loud enough for the medical profession to hear me? Ya think?
Actually it is controversial whether Lyme is over diagnosed or under-diagnosed. If you think about it; if the tests for it are unreliable, then you are going to miss people who have it and diagnose people who don't. If you never consider it in your differential diagnosis then you'll never find it. If you don't believe, in this day of instant mobility from one place to another, that it can't and never will, occur in your area then you'll never look for it and you will likely miss some. If you only use the ELISA test, which is the one every lab normally runs when Lyme titers are ordered, then even the CDC admits their are too many false-negatives; you'll miss it.
So, my take on it, is that Lyme is likely under-diagnosed. If a person has a suggestive or postive Western Blot, then a course of antibiotics is only proper, safe, and good medicine. Once the LP is done, the antibiotics will NOT change any of the rest of the work -up for MS. Do I believe that Lyme takes years of antibiotics to treat? No, I don't. IMO, the studies showing that the vast majority are cured with 3 to 8 weeks are good.
Now, the LP will not show if you have Lyme or not. If anything, it will show if the Lyme spirochete has invaded your brain causing the lesions. The best way to determine that is to do a PCR on the spinal fluid for the Lyme DNA to check for the actual presence of Lyme "past" the blood-brain barrier". That would mandate the longer use of antibiotics.
So, I would have you take the antibiotics for a month (continuous) at least. The ones your GP gave you. When you stop antibiotics before the bugger is all killed they can grow back, so you need to start all over after the LP.
If you improved when you started the antibiotics, yes, you might have a little placebo going on, because "hope" (that you might soon be better) is a powerful stimulant for endorphins. That's great! But also, antibiotics could have been killing off the cause of the problem; it could improve peripheral nerve infection. Lyme infects the peripheral nervous system very quickly, and might improve quickly. Lyme that is actually IN the brain and spinal cord needs more aggressive and longer therapy (2 months +/- ).
But, doxycycline (isn't that what you're on?) also exerts an anti-inflammatory effect throughout the body, not just an anti-infective effect. There was a study a year or so ago that showed improvement in lesions in MS when treated with doxycycline alone (I have to look this up to be sure). Of course one group of people believed that this was because the antibiotic was actually treating a Lyme infection. The researchers believed that it was the effect on the patients' immune systems.
I don't see any reason why you can't be on antibiotics for a couple months for lyme disease while they are finishing the work up for MS.
As for the neuro finally getting animated....well, suddenly someone is looking over his shoulder! He better cross all his "t's". Sheeehs!
Remember, everyone; one of the things you can do to get a neuro to move along (sometimes) is to mention that a member of the family or a close friend, who is also a physician, (that would be me. Your families like me okay, don't they?) has mentioned to you that your symptoms are suggestive of MS and that they recommend this that or the other. If you are in need of an LP, a spinal MRI, or a VEP or something, have a someone else write it on a piece of paper along with other "thoughts" and refer to it during a visit. Knowing that another doctor is commenting on the case will often get a wishy-washy doc off their duff!
Finally, and we've talked about this before. Focusing all your attention on symptoms will make them worse. But only in the rare case of a true hypochondriac that imagines every symptom that fits their fear, will people create true symptoms that look like MS.
The trump card is what the patient is going through and experiencing!
President and Founder of ON-AND-ON ANON
Quix
Now that you say it, I seem to remember that you needed to be off the antibiotics. Brain fog can be entertaining can't it!
It is interesting that those symptoms are returning, and I am sorry they are returning as you were probably feeling a bit better.
I hope you get an answer soon. Hold on to your friends here in the meantime...
Wanna
It is interesting that those symptoms are returning, and I am sorry they are returning as you were probably feeling a bit better.
I hope you get an answer soon. Hold on to your friends here in the meantime...
Wanna
Hi Stacey!
Do you mind if I use one of your tricks tomorrow when I go see OTF?? I think I'll tell him that my GP was furious and wants to order another LP for me....LOL
(not that I want to have another LP, but it's looking like I'll have to!)
Wow, I'm sorry that you're probably more confused now than you ever were....Geesh! It's so frustrating isn't it?? Why can't there just be one simple test for everything?? I wish! (as I'm sure you and everyone else does too!)
Take care, Stacey, and like Wanna says rant away!
Tammy
Do you mind if I use one of your tricks tomorrow when I go see OTF?? I think I'll tell him that my GP was furious and wants to order another LP for me....LOL
(not that I want to have another LP, but it's looking like I'll have to!)
Wow, I'm sorry that you're probably more confused now than you ever were....Geesh! It's so frustrating isn't it?? Why can't there just be one simple test for everything?? I wish! (as I'm sure you and everyone else does too!)
Take care, Stacey, and like Wanna says rant away!
Tammy
They want me to be off of the antibiotics before the LP. I had taken @ 2 weeks worth and felt better (numbness was almost gone and constant headache was gone). But it is the placebo effect I am sure-lol I have been off of them for 10 days now and the feet buzzing and facial numbness, etc. are back.
I hope that you find relief in whatever regimen that they put you on. If you feel better then I personally would do it!!! If something works then why should you suffer anymore??
BEST WISHES!
Stacey
I hope that you find relief in whatever regimen that they put you on. If you feel better then I personally would do it!!! If something works then why should you suffer anymore??
BEST WISHES!
Stacey
Sorry you are so frustrated. Let's hope the LP gives a clear picture. I know you have been bouncing back and forth and that is incredibly difficult.
Is it possible to start the antibiotics while still testing for MS? Then, if it is lyme you are not wasting time.
You ramble on sweetie! We're here for you! I just wish I could hand you an answer.
Wanna :o)
Is it possible to start the antibiotics while still testing for MS? Then, if it is lyme you are not wasting time.
You ramble on sweetie! We're here for you! I just wish I could hand you an answer.
Wanna :o)
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