Aa
Please translate MRA result!
I've been treated for neurological Lyme disease for several months and just had another round of brain scans, this time including an MRA and an MRV. The MRA results stated: "Focal stenosis in the right middle cerebral insular opercular distribution. This presumably relates to the patient's cerebral lesions suggesting vasculitis/vasculopathy. Clinical correlation recommended." Can anyone tell me what this means? Is this serious?
Thanks.
Thanks.
These are all good questions for your docs ... so glad you are seeing Horowitz's PA. He has a good reputation, as I recall, but I don't know anyone who has been treated in his office.
If you do indeed have Lyme, it messes with blood pressure etc. too, so the neuro may not be fully taking that into account, since neuros aren't all that interested in Lyme, in my experience.
I would tho call the neuro's office and report the numbness. It make cause a change in the instructions.
You go, girl. You're doing what I would do. Hang in there.
If you do indeed have Lyme, it messes with blood pressure etc. too, so the neuro may not be fully taking that into account, since neuros aren't all that interested in Lyme, in my experience.
I would tho call the neuro's office and report the numbness. It make cause a change in the instructions.
You go, girl. You're doing what I would do. Hang in there.
Yes, it's a very sneaky disease. I think neurological Lyme has to do with the bacteria's presence in the brain and/or spinal fluid. Even though I've had LOTS of antibiotics, I haven't been to a LLMD yet, which means I haven't had that sort of comprehensive treatment. I've read about biofilms, so I wasn't totally surprised that the antibiotics alone didn't do the trick. Funny though, the conventional docs thought they'd do the trick. Maybe they do for some people with Lyme. I've been trying to get in with Dr. Horowitz in Hyde Park, NY (he's the closest doc to me) for months now. Finally accepted an appointment w/ a P.A. in his office. Now trying to come up with the money to actually PAY for the appointment. The P.A. costs the same as the doctor, which doesn't seem right. Guess when you get desperate you'll do anything though. I read Burrascano's "guidelines" a while ago. Will check it out again though.
The neurologist hadn't looked at my file or tests before I got there, so much of the appointment was spent doing that. Turns out there's narrowing of one of the major arteries in my brain, and another one's either totally closed up or just plain not there. So now have added something prevent the arteries from constricting, which also lowers blood pressure (which is already low). Interesting first night. Woke up w/ both hands and one leg asleep! I'm concerned that this is yet another attempt at treating symptoms (narrowed arteries in brain causing headaches) rather than curing the cause, which I still think is Lyme disease.
The neurologist hadn't looked at my file or tests before I got there, so much of the appointment was spent doing that. Turns out there's narrowing of one of the major arteries in my brain, and another one's either totally closed up or just plain not there. So now have added something prevent the arteries from constricting, which also lowers blood pressure (which is already low). Interesting first night. Woke up w/ both hands and one leg asleep! I'm concerned that this is yet another attempt at treating symptoms (narrowed arteries in brain causing headaches) rather than curing the cause, which I still think is Lyme disease.
PS Neurological Lyme (meaning affecting your nervous system, including the brain) seems to cause inflammation resulting in all kinds of odd symptoms.
I honestly don't know how there can be an absolute differentiation made between neuro vs non-neuro Lyme, but perhaps it's an indication of the relative impact the infection has or doesn't have on the brain, since it is hooked into everything in the body. Some of us have more neuro-like symptoms than others of us. Sneaky disease.
Another thought: Lyme is often treated with a combination of meds that (1) kill the Lyme bacteria, but only after (2) penetrating a slimy shield Lyme makes for itself called a biofilm. The Lyme apparently hide in the biofilm and the immune system and meds can't reach them there. Like a treehouse in the back yard where mom and dad can't find the kids -- you know they are there somewhere, but can't lay hands on them.
It doesn't sound like you have been treated with so-called cyst-busting meds that penetrate the biofilm so the regular abx can do their job of killing the bacteria. Flagyl (metronidazole) is the one I was given.
At ilads [dot] org, under the tab 'about Lyme', there is a link to Burrascano's 'Diagnostic Hints and Treatment Guidelines' which is almost conversational in its approach to discussing Lyme, while also being technical and explanatory. You can search inside the document for terms or words you are looking for.
OR just google/search "lyme biofilm" and you'll find some helpful information. If your docs are not interested in discussing these issues, then you may want to consider finding a new doc, but that's not for me to say.
Best wishes -- let us know what you do and how you do, okay?
I honestly don't know how there can be an absolute differentiation made between neuro vs non-neuro Lyme, but perhaps it's an indication of the relative impact the infection has or doesn't have on the brain, since it is hooked into everything in the body. Some of us have more neuro-like symptoms than others of us. Sneaky disease.
Another thought: Lyme is often treated with a combination of meds that (1) kill the Lyme bacteria, but only after (2) penetrating a slimy shield Lyme makes for itself called a biofilm. The Lyme apparently hide in the biofilm and the immune system and meds can't reach them there. Like a treehouse in the back yard where mom and dad can't find the kids -- you know they are there somewhere, but can't lay hands on them.
It doesn't sound like you have been treated with so-called cyst-busting meds that penetrate the biofilm so the regular abx can do their job of killing the bacteria. Flagyl (metronidazole) is the one I was given.
At ilads [dot] org, under the tab 'about Lyme', there is a link to Burrascano's 'Diagnostic Hints and Treatment Guidelines' which is almost conversational in its approach to discussing Lyme, while also being technical and explanatory. You can search inside the document for terms or words you are looking for.
OR just google/search "lyme biofilm" and you'll find some helpful information. If your docs are not interested in discussing these issues, then you may want to consider finding a new doc, but that's not for me to say.
Best wishes -- let us know what you do and how you do, okay?
Yeah, I'd see a Lyme specialist. It's a tricky disease with unusual characteristics compared to other bacterial infections.
Here's a thought, tho I'm no scientist/medical person: the standard Lyme tests look for antibodies in the blood, not for the bacteria. The antibodies may linger for a period of time after they have done their work, just to be sure they mop up any stragglers. Therefore the tests could perhaps stay positive for some period of time. (I've heard of that happening in other diseases.)
Were you tested for any co-infections? They need different tests and different meds.
I'm with you, I'd go see the Lyme doc. Let us know what you find out, okay? Take care.
Here's a thought, tho I'm no scientist/medical person: the standard Lyme tests look for antibodies in the blood, not for the bacteria. The antibodies may linger for a period of time after they have done their work, just to be sure they mop up any stragglers. Therefore the tests could perhaps stay positive for some period of time. (I've heard of that happening in other diseases.)
Were you tested for any co-infections? They need different tests and different meds.
I'm with you, I'd go see the Lyme doc. Let us know what you find out, okay? Take care.
The "A" and "V" in MRA and MRV refer to arteries and veins, in this case in my brain. I have an appointment w/ a new neurologist today so I should know more after that. I guess that'll be the clinical correlation. I have no idea whether the brain scan's serious or not. I had the scans over a month ago but I think I fell through the cracks because my old neurologist left the practice and I hadn't seen the one she transferred me to. The only thing I know for sure is that I've had a headache almost constantly for months now and ice-pick-like pains in my head off and on for longer than that. Also, the "mainstream" doctor just told me yesterday that I still tested positive for an active Lyme infection AFTER having 4 weeks of oral Doxy, followed by 8 weeks of IV Rocephin, followed by my current regime of 3 grams of oral Amoxicillin! Her new recommendation is that I see one of the Lyme specialists. Wish I'd done that to start with, but I was trying to take advantage of the fact that I have health insurance.
What did your doc say about the results?
I don't even know what an MRA and an MRV are!
Stenosis means a narrowing of an area, in this case 'the right middle cerebral insular opercular distibution', whatever that is! It sounds like a specific spot in your brain.
Vasculitis means inflammation of the blood vessels, and vasculopathy means something being not entirely normal about the state of the blood vessels -- maybe from the inflammation.
'Clinical correlation recommended' is telling your MD to read these test results with your symptoms and history in mind to come to some conclusions or directions.
I'm not medically trained, but having had neuro issues with Lyme myself, I can vouch for the effect it can have on brain function, mood, memory, etc.
Is the brain scan report serious? Your doc is the only one who can say. When is your next appointment?
I don't even know what an MRA and an MRV are!
Stenosis means a narrowing of an area, in this case 'the right middle cerebral insular opercular distibution', whatever that is! It sounds like a specific spot in your brain.
Vasculitis means inflammation of the blood vessels, and vasculopathy means something being not entirely normal about the state of the blood vessels -- maybe from the inflammation.
'Clinical correlation recommended' is telling your MD to read these test results with your symptoms and history in mind to come to some conclusions or directions.
I'm not medically trained, but having had neuro issues with Lyme myself, I can vouch for the effect it can have on brain function, mood, memory, etc.
Is the brain scan report serious? Your doc is the only one who can say. When is your next appointment?
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