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Lyme Disease
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Posted 8/2/2017 12:08 PM (GMT -5)
Had a brain MRI yesterday. Neuro called me today and said they found white spots on my brain and they want to do another one with contrast. He said it is as if I am having mini strokes or that they are caused by the Lyme. The one with contrast while determine if they are active.

I am quite upset about it as I just received the news. Not sure what to expect. If these are from Lyme, can I get better. Will my walking get back to normal?
Posted 8/2/2017 12:36 PM (GMT -5)
Hi Hoagie - sorry you received this news. I remember having my brain and spine mri's and being so worried waiting for the results.


Since you do have Lyme disease - my bet is they are from that. Many people do have the white lesions and fully recover with treatment.

Where are you now - with treatment?
Posted 8/2/2017 12:45 PM (GMT -5)

Girlie said...
Hi Hoagie - sorry you received this news. I remember having my brain and spine mri's and being so worried waiting for the results.


Since you do have Lyme disease - my bet is they are from that. Many people do have the white lesions and fully recover with treatment.

Where are you now - with treatment?

My tests have not come back yet, so they haven't started me on anything yet.

I am pretty unnerved about the whole thing. I mean, I was kind of expecting them to find something. But, the reality of it is upsetting. I am so worried that this is going to progress and take over me entire nervous system.
Posted 8/2/2017 12:46 PM (GMT -5)
Do you have a LLMD yet? (Sorry, I can't remember)

..or is your 'regular' Dr. doing this testing?

Hang in there - I know it's scary.

I didn't have lesions on my brain - but something in my spinal cord showed up.
Posted 8/2/2017 1:19 PM (GMT -5)

Girlie said...
Do you have a LLMD yet? (Sorry, I can't remember)

..or is your 'regular' Dr. doing this testing?

Hang in there - I know it's scary.

I didn't have lesions on my brain - but something in my spinal cord showed up.

He's my neurologist. But, he is definitely lyme literate. He colaborates with that famous LLMD in DC.

Thanks girlie!!
Posted 8/2/2017 1:43 PM (GMT -5)

Hoagie said...

Girlie said...
Do you have a LLMD yet? (Sorry, I can't remember)

..or is your 'regular' Dr. doing this testing?

Hang in there - I know it's scary.

I didn't have lesions on my brain - but something in my spinal cord showed up.

He's my neurologist. But, he is definitely lyme literate. He colaborates with that famous LLMD in DC.

Thanks girlie!!

Oh - that's great!
Posted 8/2/2017 4:11 PM (GMT -5)
Hi Hoagie,

I know it's upsetting. When I was trying to get diagnosed, I had an MRI and they found lesions in my brain also. Lesions that hadn't been there in a previous MRI for unrelenting headaches. I went down the road of MS, but once I found out it was Lyme, I stopped seeing my neurologist, because I figured the lesions were from the Lyme. I've been treating now for a couple of years, and am scheduled to have a follow up MRI soon (hopefully this year) and I'm very interested to see what (if anything) will have become of those lesions.
Posted 8/2/2017 4:32 PM (GMT -5)

Jasperilla said...
Hi Hoagie,

I know it's upsetting. When I was trying to get diagnosed, I had an MRI and they found lesions in my brain also. Lesions that hadn't been there in a previous MRI for unrelenting headaches. I went down the road of MS, but once I found out it was Lyme, I stopped seeing my neurologist, because I figured the lesions were from the Lyme. I've been treating now for a couple of years, and am scheduled to have a follow up MRI soon (hopefully this year) and I'm very interested to see what (if anything) will have become of those lesions.

If you would like to share the results with us, please do. (But I understand if you don't want to)
Posted 8/2/2017 10:35 PM (GMT -5)
Girlie, I'd be happy to share them...if I can remember! ;-)
Posted 8/3/2017 6:43 AM (GMT -5)

Jasperilla said...
Hi Hoagie,

I know it's upsetting. When I was trying to get diagnosed, I had an MRI and they found lesions in my brain also. Lesions that hadn't been there in a previous MRI for unrelenting headaches. I went down the road of MS, but once I found out it was Lyme, I stopped seeing my neurologist, because I figured the lesions were from the Lyme. I've been treating now for a couple of years, and am scheduled to have a follow up MRI soon (hopefully this year) and I'm very interested to see what (if anything) will have become of those lesions.


Definitely keep us posted please.
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