posted
I just had a brain MRI and concerned. My lyme doc said not to worry about it. I am not sure how much of a change it is, i am sending my old films to the radiologist so he can compare and see how much change there has been.
It looks as if the lesions have gotten bigger and there is more of them. During treatment for lyme can they get worse? I guess I just thought that it would get better and I wouldnt get any more. I just figured after over a year of treatment for lyme I would have a good or no change in my Brain MRI. I have been feeling great.
I will just type the MRI results
Impression: Abnormal Bilateral T2 and flair areas of increased signal intensity. This is a nonspecific finding and the differential diagnosis includes ADEM "Alzhemiers", Lyme disease, Vasculitis and Multiple Sclerosis.
On the T2 and flare images there are bilateral white matter areas of high signal intensity. The laregst in the left posterior cerebral white matter measures approximately 6mm in diameter. Thereis a secondary unloctated more superiorly in the right superior parietal lobe measuring approximately 5mm * 3mm. There is also an area of abnormal signal intensity in the right posterior frontal lobe at the gray white matter junction measuring approximately 6mm *6mm. There are at least 2-3 other smaller areas of abnormal signal bilaterally in the periventricular white matter. There is no abnormal enhancing structure identified.
I am just scared, I was intially thought to have MS but was diangosed with lyme. I have had great improvements and have been feeling great. I am just concerned to why my MRI report seems worse than the others I had. So anyone else with Lyme can relate to my MRI?
I just dont know if I should accept that something else might be going on with me.
Please any advice send my way!! Maybe if I can see that I am not the only one I might be able to calm down and re-focus.
Posts: 61 | From ILLINOIS | Registered: Nov 2005
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posted
I have had great improvements and have been feeling great.
That says a LOT!!!!
I am just concerned to why my MRI report seems worse than the others I had.
How do you know it's worse??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi BB!
Unless you have other, worsening symptoms (and it sounds like you don't!), I would not be alarmed.
A couple possibilities are: different MRI machine? Different radiologist interpreting the lesions?
Perhaps some very small lesions were not identified in your first MRI?
I can tell you that my reading on the subject reveals that at least in brain lesions, your chances of them going away are about 50/50.
It is certainly very good news that they did not enhance.
I had a similar scenario this year, and repeated a brain MRI from slightly over a year ago that had shown 11 lesions, with a report almost identical to yours as far as differential diagnoses went plus size.
I was NOT getting better after a year of treatment and my head was killing me.
I was disappointed to find the MRI looked exactly like it did last year. :-( Surely SOMETHING must be different??? Nope.
Shortly afterward, I found out I had babesia WA-1, then began making some serious progress.
What I WOULD do is continue to follow your LLMD's advice. After all, you've made great improvement, which is wonderful. However, because I'm kind of a freak, I wanted to cover all bases and know every possible thing that was going on, even though I suspected I had lyme, so I also had lumbar puncture and evoked potentials done. Now, you may or may not wish to have all of those done, but I think it contributes mightily to your overall clinical picture.
Then I would look at your western blot results, plus your wonderful improvement, and realize that neuroborreliosis can cause brain lesions. Which statistically might not go away, even though you certainly can get better. It can even screw up other tests typically used to help firm up an MS diagnosis, despite you NOT having MS. But for me, all of that was good information to have.
After having all of that, plus a recalled tick bite and CDC positive test (and a curious absence of the usual MS signs), I could deal with the "brain lesions" thing and even deal with knowing they might not get better, and feel confident I did not have MS.
Also, despite my lesions not going away, at least now I usually remember where I am, and what to call things, unless I'm having a REALLY bad day.
Keep up the great improvement and try not to stress.
Here's a hug!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Hi BB, It is hard to know what to do with the lesion mri's. My last three showed 40 lesions, similar to yours. No change.
The big question is: are neuro symptoms all related to the lesions OR do we still have lyme 'ketes screwing up the brain function?
Because there has been no change, my GP and even my LLMD thinks these neuro problems might not go away even with more treatment.
That's a hard pill to swallow so I continue my ketek/tini schedule of pulsing which I made up myself. Get tired of playing doctor as I cannot retain anything the good people on lymenet say.
Would be happy to talk with you if you want to email me. Altho I have had this so long, I still feel like a bloody novice.
I have no physical symptoms (aka stomach, bowels, etc.) but all neuro stuff (cognitive, tight and full head which makes me dizzy, out of body feeling, not all here, no crowds, pereferial neuropathy, etc.) Are these similar to yours?
Posts: 190 | From BC Canada | Registered: Jul 2004
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
My son had all the lesions at the beginning of treatment. After nine months he still had them but after a year they were gone. It can take a while for the meds to cross the BBB.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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