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Posted 10/7/2011 3:10 AM (GMT 0)
I'm a little confused about Lyme affecting the brain. If my brain scans are normal...does this mean Lyme hasn't affected my brain? My doctor said it's a good thing but I just don't get it. I thought late stage Lyme meant it's in your brain and I don't know how I could have it for so long and not have it in my brain? Do the scans just mean there's no damage? Does the bacteria just move around? I have a million cognitive symptoms and definitely nerve problems but....my doctor says the Lyme isn't in my brain. Any insight would be greatly appreciated as I just don't understand this disease after 10 years....
Posted 10/7/2011 11:32 AM (GMT 0)
Hi there borderlyme,

The problems the Lyme bacteria cause are often not visible in the scans -- that is why LLMD's often don't use that method of diagnosis. It just isn't helpful. The real telling sign is that you have the symptoms -- that does mean it is in your central nervous system and brain.

Now, it is good that nothing can be seen in your brain! That rules out other problems and indicates that the problems you are having now are reversible. Many of the cognitive problems in Lyme are caused by the toxins produced by the Lyme bacteria while they are living and also as the immune system and medications kill them off. The are also so small and the brain so complicated, their damage is just not easily seen on these scans.

I think there is something in us that would want to have a major sign on a test like that to show the world how horrible we feel!!! But really, you want a normal brain scan!!!
Posted 10/7/2011 3:48 PM (GMT 0)
This is a very good question and one that I too am confused about. I have 20 lesions on my brain. None of them are consistent with MS. My neuro aksed me if I'd had lyme. When I started seeing my LLMD, he wanted me to get a brain spect image scan. I did and it did not show any problems at all. My symptoms are mostly neuro however, I never had the brain fog until a recent change in meds. I just wonder why I have the lesions but my brain spect thing showed normal....?

Also, I need to repeat my MRI at the MS center and I'm wondering if I show more lesions, are they lyme lesions? I had a repeat MRI six months after my first and it showed no new lesions... I'm confused.
Posted 10/7/2011 7:17 PM (GMT 0)
I've had the MRI with 'no abnormal findings' and then a SPECT scan where I had two areas with reduced blood flow - one was reduced by 23% and another area was reduced by 24%. Scared the beejeebers out of me! At least until I settled down and did some research about SPECT Scans and Lyme. The reduced blood flow only indicated where the Lyme is the most active - Central nervous system, heart, peripheral nervous system, joints and such.

The lesions are areas of disease or injury. It has been well documented that infected brain tissue is all that's needed to infect others with Lyme as well, so I would guess that the lesions are possibly pockets of spirochetes - in cyst form maybe? Anyway, only rarely is any brain damage from Lyme irreversible, and if they are pockets of infection, then with treatment they should resolve as well.

I've had all of the symptoms of a brain infection -as well as many other things thanks to Lyme- and it's pretty scary to go through, but I've managed to make it through!! Detoxing and treatment will surely go a long way toward helping you get past these issues.
Posted 10/7/2011 7:33 PM (GMT 0)
If you think about how many of us have leg pain/joint pain, and get lots of MRIs and CT scans which never find anything, it doesn't surprise me in the least that a brain scan also doesn't pick up anything. In fact, I have more than one friend who will insist in my case that a brain scan is 100% guaranteed to not find anything!
Posted 10/7/2011 7:35 PM (GMT 0)
LOL!! That's what my brother said too!!! Giggle!
Posted 10/8/2011 2:11 AM (GMT 0)
Thanks everyone, and CycleVancouver, that is a really good point about the joint pain...that was my earliest symptom 12 years ago and because they saw nothing on any scans (if they bothered to do any) they called it growing pains (real technical term). I guess at 24 I'm still having some wicked growing pains, even in my brain!!
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