oops! Lymetutu
I've had lyme symptoms - neurological ones included. Would an MRI show this or not??
quote:
Originally posted by hiker53:
From what I understand, an MRI can show lesions that might be caused by lyme, but cannot determine the cause. For example, MS has brain lesion. A SPECT can better distinguish between the two.
fries....If it would help, I'd be happy to talk to your mother. You can email me.
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oops!
Lymetutu
Well, I guess you are getting one, hopefully it shows NOTHING. No visible damage yet would be a good outcome.
Just what are your all symptoms, and how bad are they?
[This message has been edited by James H (edited 03 March 2005).]
He started my son on doxy based upon the MRI.
It will also relieve some anxiety if it comes back all normal.
[This message has been edited by James H (edited 04 March 2005).]
I'm not sure about this.
If it comes back abnormal it could be lyme or ms. However, I have a bad feeling that they would dx ms. You see, currently, the doc I am seeing works at THE MS CENTER OF ATLANTA. It has the word MS in the name.
Does MS have muscle, joint, and bone pain??
My symptoms are:
tingling in arm, leg, face (very short times)
muscle (or bone?) pain in legs and arms
joint stiffness
headache (constant, but not strong)
and some other stuff I'm not sure is related, though sometimes appear on symptoms lists.
lymetoo - I'm not sure my mom is quite ready, but I'll talk to her about it. Thanks so much for your help!
Actually, thank you everyone for answering all of my Q's!
One doesn't want to be sent down the road to the wheelchair if the problem is just a bacterial infection that can be treated with common antibiotics.
Those are the usual day to day symptoms for many of us. They can get worse for a while with treatment, then they get better.
How do the back of your neck and shoulders feel?
The numbness, tingles, and twitches here and there are pretty common even with early lyme, and do not mean advanced neurogical involvement. They kind of move around and come and go. The good thing is they don't seem to be permanent.
Hmmm. I wonder if they would diagnose US with MS? Possibly.
You don't happen to have a dermatologist do you? 
It is interesting that your first Lyme Elisa came back 'borderline'. The usual is just plain negative, it was picking up something.
I would bet a properly done WB would light up with plus signs if you get ANY kind of a response from an Elisa, and with your so familiar symptoms.
Our Western Blots show what they call 'equivocal' or '+/-" on some bands. It means there was something there and the lab tech could see it, but it was faint. It is like just being 'slightly pregnant'. If you are 'just a little bit... you ARE.'
You have a right to get that properly checked out, if you desire.
I am sorry if we maybe over loaded you with responses. When you posted the other day I could see my own daugter standing next to a huge medical black hole, and just wanted to scream out....
"DON'T STEP IN THE HUGE MEDICAL BLACK HOLE THREEFRIES! IT'S 3 FEET TO YOUR LEFT!"
I think a few others felt the same way. We are all quite harmless, we are just trying to help.
I hope you find the answers you need.
If they dx you with MS [at the MS Center] you are headed down a dead end street. All they do is throw drugs at you that try to cover symptoms.
There is no cure for MS....If it's really Lyme, then you can get WELL or get BETTER!
Also remember that if they dx you with MS, it doesn't mean you have it. There is no definitive test for MS.
Getting a WB and trying abx to see what happens would be a very smart move.
and yes, we don't mean to overwhelm you....just trying to help!
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oops!
Lymetutu
[This message has been edited by Lymetoo (edited 04 March 2005).]
SPECT scan will show a cerain abnormal pattern in lyme patients. It is also not diagnostic bc the same pattern will show in pts with lupus, cocaine use and HIV. However, it is much more useful. You know if you are a cocaine user and a doc can rule out lupus and HIV. If you don't fit any of those categories and have abnormal pattern than hmmmm.....
Pomegranite.
Did just have a brain spect at Columbia in NYC. It showed abnormal pattern of bloodflow (which is what that test measures, blood flow in your brain) consistent with lyme and consistent with my symptoms.
If you have to pay anything out of pocket I wouldn't do the MRI, unless you want to rule out other causes, like a tumor.
Pomegranite
SPECT scan will show a cerain abnormal pattern in lyme patients. It is also not diagnostic bc the same pattern will show in pts with lupus, cocaine use and HIV. However, it is much more useful. You know if you are a cocaine user and a doc can rule out lupus and HIV. If you don't fit any of those categories and have abnormal pattern than hmmmm.....
Pomegranite.
Everyone has given you such great advice.
Here's my story:
When I went for an MRI around 2003, for some strange reason I told the person performing the MRI that it was to rule out MS. I figured she already knew that with the paper work I gave her. Not so.
She told me she was very glad I alerted her to that because she would need to make some adjustments to get better results.
So glad I told her!!
I had white spots on the brain, but neurologist said they were too small to be MS lesions, but looked more like Lyme Disease. But he said your Lyme test is negative so you don't have LD.
Keep in mind that a 1990 MRI was done to rule out a tumor, but was NORMAL.
Anyway, once hearing those words from the neurologist, I left his office and found an LLMD.
Upon finding an LLMD, it was like everything was fast-forwarded. Over the phone, he placed me on Zithromax for 12 days. On the 13th day I was to be tested through Igenex Lab.
It was positive; he even said I had a severe case. He diagnosed me with LD based on symptoms on my first office visit, even before the Igenex tests reults were back.
Best Wishes,
Jan
Later...
quote:
Originally posted by Recipegirl05:Upon finding an LLMD, it was like everything was fast-forwarded. Over the phone, he placed me on Zithromax for 12 days. On the 13th day I was to be tested through Igenex Lab.
It was positive; he even said I had a severe case. He diagnosed me with LD based on symptoms on my first office visit, even before the Igenex tests reults were back.
I think it would be a great idea if threefries could get some abx, then take the test.
My LLMD had me take abx for 3 wks, then off for two, then test.
More likely to show positive.
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oops!
Lymetutu
I suggested that she could eat a couple pounds of chocolate to get some really bad zits, and then go ask her dermatologist for a longterm Minocin presscription to clear them up...
Does that count?
OK, being serious, the ABX before the test is very important. My Dr. considered it necessary to put me on 1000mg of flagyl for 5 days to get the bacteria into my blood where they would show up on a test.
We KNEW that would be a VERY rough 5 days, but it was necessary.
We already knew what I had, we had pictures of them from the microscope. But we NEEDED the lab tests.
They showed up too... despite a previous 6 months of antibiotics to drive them into hiding places.
Challenging the infection with strong antibiotics just prior to the test is important.
[This message has been edited by James H (edited 04 March 2005).]
How do the back of your neck and shoulders feel?
The numbness, tingles, and twitches here and there are pretty common even with early lyme, and do not mean advanced neurogical involvement. They kind of move around and come and go. The good thing is they don't seem to be permanent.
It's interesting that your first Lyme Elisa came back 'borderline'. The usual is just plain negative, it was picking up something.
I would bet a properly done WB would light up with plus signs if you get ANY kind of a response from an Elisa, and with your so familiar symptoms.
~My neck, back a shoulders hurt bad. Especially if I lay down - no matter how I lay they hurt like I was crushing them or something.
Thanks again for all the responses - it means a lot to me.
I'm too much of a wimp to straight talk the doc. I'm going to have to get my mom in on this one. I just can't do it alone.
How am I going to say to a man with a PhD that I think I need to be on abx and re-tested for lyme? I don't know that I can do that.
Not to mention, unless things get worse - I won't see him til May. (or if something comes back in blood work or MRI)
I'm not even sure my referall allows me to see him more than twice and have it be partially paid for.
I need an LLMD. I need to call the one in NC. I think there is one there anyway.
This is getting to be so complicated.