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Posted 2/14/2012 5:57 PM (GMT -5)
My MRI showed white matter in the frontal lobe 3mm it says ..  I went to the Neurologist and he said it wasnt anything to worry about and today I went to the LLMD for the my first apt and he kinda made a big deal of this ... Has anyone here had this "white matter" show up on a MRI brain scan ?????????????
Posted 2/14/2012 6:22 PM (GMT -5)
Hi Purplegirl,
Not all, but lots of us with Lyme Disease have these spots. They usually go away with treatment though. What do you mean the LLMD made a big deal out of this? What did he say?
Posted 2/14/2012 6:41 PM (GMT -5)
Well when I told him that I had went to the Neurologist and that he said I didnt have MS and that these 3mm things were nothing to worry about and that basically the Brain scan was normal .. the LLMD said real fast ..this isnt normal .... so of course that sent me into a tizzy cuz I highly doubt that a Neurologist would say it wasnt a problem if he really new it was a problem or an issue ?????????????? Unless the LLMD is looking at this from a Lymes stand point and the Neurologist isnt .... I just dont understand how 1 doc can say its ok and dont worry and another say it is not normal and nothing against the LLMD but he dont read Brain scans everyday like the Nuero Doc does ...
Posted 2/14/2012 6:55 PM (GMT -5)
I'd find a new LLMD. Seriously, I had an MRI that showed numerous lesions. I freaked and my LLMD said that this is common in chronic Lyme cases and will clear with treatment. That's why many Lyme patients get misdiagnosed with MS. If your LLMD doesn't understand this, there is something wrong. Maybe he's very new or whatever. My LLMD has seen hundreds of patients and works with a network of ILADS docs. Abnormal looking MRIs are common and would be more so if more people with Lyme got them. I only got one because I had low testosterone and they wanted to make sure my pituitary was okay (it was) and they saw the lesions. She said that I can get another done after treatment and the MRI will be clear and the docs will swear that the abxs had nothing to do with the resolution because of their Lyme ignorance. If your LLMD doesn't know this, IMO, he doesn't have a clue...
You shouldn't have to deal with that!
Posted 2/14/2012 6:59 PM (GMT -5)
True about the Neuro Doc reading more brain scans, but most likely the Neuro doesn't know anything about Lyme Disease either. I still say that a person with Lyme can have many of those 'spots' and things are fine. As we age we are suppose to get a few of those spots as well.

I have no idea why your LLMD would be so fast to jump like that though.

If it were me, I wouldn't worry about them, unless I had a great many of them, but even then it would just mean that I would find out what's creating them, to be sure there isn't another issue going on.
Posted 2/14/2012 7:01 PM (GMT -5)
Did he maybe mean that it wasn't "normal" for HEALTHY people? That could just have been his way of saying that it was another symptoms of Lyme, and not that it was really abnormal with Lyme patients.

I'd ask for clarification from him before you run away, just in case.
Posted 2/14/2012 7:02 PM (GMT -5)
Trav, even numerous lesions are fairly typical with Lyme. If one has neuro Lyme, that's what you'll see. With treatment they will clear.
Posted 2/14/2012 7:49 PM (GMT -5)
Zeusy... I think maybe your right and thats what he meant .. This LLMD is a good Doc and he sees Lymes patients from 16 states and 3 countries and has been practicing medicine for 40 years.. I was just shocked when he acted like it was a bog deal after the Neuro doc told me it was nothing ... Im thinking he meant its a big deal for a Lyme Patient and the Neuro Doc I seen does now know I have Lyme .... also the LLMD is pretty sure I have Bartonella ... I do have some Neuro symptoms but not as bad as I have read others do .... Thanks for all the Info as I do feel a little better about this and feel that it is just another Lyme "issue" and will probably not be an issue ever ..
Posted 2/14/2012 7:57 PM (GMT -5)
Yazzer,
I knew that a Lyme patient can easily have numerous lesions - I literally meant a very large amount of lesions would have me concerned - not just several.

I actually got a laugh when I saw my brain scan - I said "this is my brain on Lyme" referring to all of those commercials way back when about drug use and they would say "This is your brain....this is your brain on drugs".

okay, it was a lot funnier at the time!! LOL! smilewinkgrin
Posted 2/14/2012 8:08 PM (GMT -5)
I have to agree with the LLMD. It's NOT normal. I also had a neurologist who dismissed my lesions and told me it didn't look like MS but he wasn't sure what it was. He of course was not familiar with lyme. My LLMD did not panic but certainly didn't dismiss it either. I have never had a repeat MRI but believe my lesions have got to be better since my thinking is better, my anxiety is better, my depression is better, my headaches are gone - all signs that the lyme or toxins were probably eradicated from the brain.
Posted 2/14/2012 8:09 PM (GMT -5)
Yup, mine were " too numerous too count" but still my LLMD was not concerned, saying with Lyme treatment they will clear. Again, it's why MS is often thought to be the issue and not Lyme. And I DO remember those commercials with the eggs! Lol. Mine looked more like a planetarium!
Posted 2/14/2012 8:14 PM (GMT -5)
Springsjean..that all makes sense to me ... I think the Neuro Doc dismissed it since he prolly knows nothing about Lyme Disease where my LLMD was not so easy to "dismiss" this ... I uunderstand this all know alot better from all you guys that explained this better to me ... Thanks :)
Posted 2/16/2012 8:03 AM (GMT -5)
Yazzer,
how did you clear up the white matter?

what treatment?

did you REscan to see if it was al cleared up
and does the white matter come back ever after you
have cleared it up?
Posted 2/18/2012 8:24 PM (GMT -5)
I'm interested too.  Have many lesions with increases each time I had an MRI, all before lyme disease dx when looking to confirm MS.  Last MRI Feb. 2011.  Now know this can all be lyme disease and would like them to go away.  Have many neurological symptoms.  Linda
Posted 2/18/2012 8:37 PM (GMT -5)
I don't know if they are clearing in me yet. I had my MRI in September ...dunno if I'll get another. I trust my LLMD's experience in this, and she has witnessed many cases where the lesions resolved. Even in cases where there was misdiagnosed MS. I may get a follow up but she suggested waiting a year between scans. The treatment regimen is abx ...dunno if the Herbals can clear lesions. My LLMD's experience is in abx. You have to have the abx cross the blood brain barrier. Flagyl does this the best but others do as well but maybe not as efficiently (talking orals here). I believe exercise- aerobic exercise- helps deliver the abx across the BBB. I/V abx cross as well but might be too intense to begin with. Again, my llmd kinda jokingly said to me that the lesions will clear with treatment but regular docs will swear it had nothing to do with the abx (referencing mainstream doctor's ignorance in all matters relative to Lyme ).
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