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Anyone with white matter lesions on brain MRI

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Posted 7/1/2017 11:12 PM (GMT 0)
Hi,

I got sick a year ago. No one could figure out what was wrong, saw cardiologist and neurologist, brain MRI showed white matter lesions and they ran the ELISA but it came back negative. Also got diagnosed with autonomic dysfunction after doing testing for that. Fast forward to a year later and still not feeling well, I got a weird rash and my dr ran the western blot and it was positive. My concern is mainly the white spots and the fact that I have had Lyme now for a year untreated. Seeing an LLMD on Friday and am on doxy for at least three weeks. Has anyone had experience with this? Is the treatment different if it affects your brain?

Thanks for any advice!
Posted 7/1/2017 11:19 PM (GMT 0)
I've had two brain mri's and the first one was to rule out MS and nothing suspicious on it.

The second one was looking specifically at my pituitary gland - so not sure if they looked at the rest of my brain - but I would think they'd notice white matter lesions if they were there.

MS is a common misdiagnosis.

No, the treatment generally isn't different if it's in the brain. i would say most of us have some neuro symptoms indicating that it's in the CNS.
LLMD's know how to treat lyme (including neuro) as well as the co-infections.

Discuss your concerns about the lesions when you have your appointment.

Some LLMD's do IV abx - but I don't know what the criteria is for their decision. I know sometimes it's when the person has trouble tolerating the antibiotics - because of stomach or other digestive problems. I heard an interview with Dr. J. (well known LLMD) and he said it was 20% of his patients that get IV treatment (and another 5% that should, but can't afford it) Based on cognitive abilities, SPECT scan showing abnormalities, if there are critical structures at risk - eg the eyes, obvious malabsorption issues

EDITED: - the % of patients who get IV abx
Posted 7/1/2017 11:36 PM (GMT 0)
Dr. J in DC pretty much orders a brain MRI with and without contrast for any patient that is exhibiting neurological symptoms to see if they have the white lesions. i don't know how he uses the information but will ask him next time i see him since my wife and i both had this done.
Posted 7/2/2017 6:33 AM (GMT 0)
Yes ...hypoperfusion in t1 t2 ...i believe lyme and bartonella severly inhibit the vasculature of brain blood flow even break down the bbb....bvt has cleared up lesions on ms brains ...iv abx has helped also ...seek treatment if not already ...www.cpnhelp.org tells of a pathologists wife who lesions cleared after 3 years of abx amox zith and flagyl

burrascano recommends 6 months iv treatment for neuro manefestations
Posted 7/2/2017 2:21 PM (GMT 0)
White matter lesions and hypoperfusion of the brain here after going 37 years without a diagnosis and still healed.

A few weeks of Doxy won't likely be all you need (symptoms have gone to far and you will need long term treatment to get to all the bacteria that is deep in the tissues), so I'm glad to hear you are going to see a LLMD.

IV meds are not always necessary to heal from this, as I have healed using strictly herbs. One of the best herbs I've used for hypoperfusion is Gingko bilboa.
Posted 7/2/2017 2:29 PM (GMT 0)
Thanks for all of the info! I appreciate it!
Posted 7/2/2017 2:57 PM (GMT 0)
Upon getting bit, my elisa was negative. My brain scan showed white matter lesions. Then I had the Western Blot and was positive for lyme disease. I healed with herbs but have not gone back for another brain scan. So I don't know if the lesions are still there or not. I do know that all my head symptoms went away with treatment. My symptoms required numerous herbs to heal me and the synergy of all of those herbs.

There is no reason to suspect that you won't heal. And you will be fine with treatment. It may take awhile. Dang disease is a bugger. It's biggest desire is to live in you.

There is not specific treatment for lyme. If there was, this forum would be very short. Everyone is different and the bacteria responds to different meds in different people. The same goes for if there is lyme in the brain. Different meds are required for different people.

Just try not to be scared. I know when you think of something in your brain it is frightening, but it won't consume your brain and you will be fine.

I had head pain, brain fog, lightening bolt zaps and lots of full headed feelings. Ear involvement and sinus involvement. My cheek bones hurt to touch them. I am fine, after treatment. So it will go away.

Hang in there.
Posted 7/2/2017 7:10 PM (GMT 0)
PeteZa - you had white matter lesions too? Why didn't you tell us? Not that it would have changed much, but at least we would have known that you too had these.

I have not had an MRI or SPECT scan to see where things are now either. Without insurance - or a doctor that believes me - that's not happening.

What I do know is that my brain has recovered incredibly well, considering I was having late stage dementia symptoms. I couldn't remember enough to even be able to type a sentence and there was a period of time several years ago where I didn't post at all due to this. Healing is possible for at least most of us!
Posted 7/2/2017 7:25 PM (GMT 0)
My mother had an MRI that showed a ton of microinfarcts. But when I search the forum I really could not find anyone with microinfarcts. Anyone else have microinfarcts? The Google seemed to indicate they are present in Stongyloidasis and Rickettsial infections. But a doctor told me they could also be caused by Lyme.
Posted 7/2/2017 8:37 PM (GMT 0)
I didn't have anyone say they saw those on my brain scans - but I was not dealing with Lyme literate doctors at the time either.

But, I did find this, and yes, it can happen with Lyme as well:
/www.ncbi.nlm.nih.gov/pmc/articles/PMC5397664/
Posted 7/2/2017 8:52 PM (GMT 0)
Traveler, I am sure I mentioned it in a post. I just looked up my CT brain scan. It was July 2015. The even more scarier part of the scan said I have a cyst in my right maxillary sinus. But stuff happens.

I don't dwell on stuff and I don't over announce all my stuff.

I'm fine now and that is all that matters.
Posted 7/2/2017 9:15 PM (GMT 0)
It was an LLMD that claimed microinfarcts could be caused by Lyme. Everyone else wrote her off as "dementia." I'm glad to have learned that you can have bad sounding stuff on your CAT scan or MRI and still recover.
Posted 7/3/2017 11:39 PM (GMT 0)
I have numerous small lesions scattered bilaterally in the subcortical region. This is highly abnormal for a middle aged person. The neurologist I saw were a complete waste of time and money only telling me I did not have MS or maybe it is MS, but we will have to wait and see. I said wait and see what, for me to die.
On my first appointment with my LLMD he said that is typical of Lyme and co. He said this before I tested positive for bb and Bart.
I am having another brain MRI mid August, this will be after 1 month of hyperbaric o2 treatment at 2.5 ATM and 7 months of antibiotics treatment. It will be interesting to see what the status of my brain lesions are at that point. I will give everyone an update.
Posted 7/4/2017 12:24 AM (GMT 0)
I just had a non-contrast MRI about a month ago and have white stuff sad
Posted 7/4/2017 1:35 AM (GMT 0)

caramba said...
I just had a non-contrast MRI about a month ago and have white stuff sad

Caramba, may I ask your age range?
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