Finally got results of Brain MRI today. There was no contrast used and had been on Doxy for over 2 months. REsults show small white matter/spots. Am I correct in assuming this is more proof of late stage disemmenated Lyme? It was not an LLMD who ordered the MRI. It was another flipping "specialist" who said "you can't have Lyme because you have been on Doxycycline for 2 months and not better yet."
She told me today that the white spots in my brain were very small, spots are very big in people with Lyme."
Thank God, I just finally found an LLNP. Have not been able to reach her yet with this news. So am hoping for opinion from experienced Lymies here!
Beagle (again) :/
Posted by lululymemom (Member # 26405) on :
This is what Dr. M. here in BC says about white lesions on the brain.
The typical lesions from Lyme disease are small multiple and superficial on brain MRI. MS lesions are typically deeper and larger but these are generalities with wide variations in the interpretations.
Yours sound like the typical lesions from Lyme that he is describing.
Posted by karenl (Member # 17753) on :
I was once told by a ND that 40 per cent of the population have these small white spots. Not sure if he is right.
Posted by Beagle (Member # 29698) on :
Would not be surprised if half of that 40% have undiagnosed Lyme! (Considering the population of Lyme ignorant main stream doctors.)
Beagle
Posted by steve1906 (Member # 16206) on :
I can't remember if mine were small or big?
But, I did have white spots back in 2008.
They said MS, and then said ageing???? They say what they feel like on that given day�.
Posted by tonysgirl (Member # 11202) on :
I just had my 3rd MRI with the same results. Luckily, I have had no changes since my first MRI in January of 2007.
The neurologist on both the first and second MRI's listed small white spots bilaterally in the frontal lobe and most likely caused from a vascular or spirochetal disorder. No one has ever described Lyme lesions being large in size, I have always heard they were tiny, like spots from migraines.
Lastly, from what I was told and have read MS lesions usually form in an area called Dawson's fingers, which is not in the frontal lobe. MS lesions usually form on the outskirts of the "fingers" area. Because my lesions were not in that area, the neurologist listed that the lesions were most likely not from MS.
I know I was very freaked out back in 2007 from this, but don't. Although I would be ecstatic if they had cleared, at least they haven't increased in size or amount. You need to find a good LLMD.
Posted by tonysgirl (Member # 11202) on :
I just had my 3rd MRI with the same results. Luckily, I have had no changes since my first MRI in January of 2007.
The neurologist on both the first and second MRI's listed small white spots bilaterally in the frontal lobe and most likely caused from a vascular or spirochetal disorder. No one has ever described Lyme lesions being large in size, I have always heard they were tiny, like spots from migraines.
Lastly, from what I was told and have read MS lesions usually form in an area called Dawson's fingers, which is not in the frontal lobe. MS lesions usually form on the outskirts of the "fingers" area. Because my lesions were not in that area, the neurologist listed that the lesions were most likely not from MS.
I know I was very freaked out back in 2007 from this, but don't. Although I would be ecstatic if they had cleared, at least they haven't increased in size or amount. You need to find a good LLMD.
Posted by bcb1200 (Member # 25745) on :
Beagle...I had two small spots pre treatment. I now have none and I'm 9 months in.
I know of a good Lyme Neuro in Mass who takes insurance. Suggest you see her. Send me a PM if interested.
Posted by annier1071 (Member # 28977) on :
I had an MRI with mulitiple signal intensities and multiple white lesions. They wrote that they can be from MS, vasculitis or lyme disease.
This is what my LLMD used to clinically diagnos me with neuro lyme since my western only had 2 bands 41 and 58. He went by the MRI, high red blood cell count, very low body temp and symptoms?
I was told the lesions go away with treatment and leave no scarring.
Posted by tickssuck (Member # 15388) on :
My MRI read "hyperintensities in the deep white matter." Are "hyperintensities" "spots"? Does anyone know? I'm assuming your MRI reports don't say "spots" and am wondering what the medical terminology is. I had docs write this off to age (43-44 at the time) and/or migraines. Weird, never known to have a migraine in my life, thankfully. Of course, several years and symptoms later, LD and company. TS
Posted by murph257 (Member # 30456) on :
I had the same MRI reading and it was dismissed as "nothing". I am so sick and over run with anxiety. May wind up in the ER because I don't think I can hold off until this appointment on Thursday.
Posted by Beagle (Member # 29698) on :
Yeah, I've never had a migrain in my life either.
Never even got headaches until the last 6 years.
Last time I stopped Doxy I spiked a fever. Went back on Doxy. Now I've been off Doxy again since Friday morning just to clear system for cd57 test and brain spect which hasn't been scheduled yet! Anyway, sure enough today I spiked a fever again. Does this make sense that Doxy might be helping even though since I began taking it symptoms progressively got worse, but never a fever. My temp is normally around 96. Normal for me is on the low side.
![[Frown]](frown.gif)