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My brain MRI images - still wrestling with diagnosis.

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Posted 4/24/2017 6:29 PM (GMT 0)
http://s1067.photobucket.com/user/oddity11/Mobile%20Uploads/story

Here is a link to two of my brain MRI images. My LLMD says these spots, which are numerous for my age, are directly from chronic neuro Lyme. I am still wrestling with this diagnosis since my main issue is small fiber neuropathy in my legs, mainly my left leg. I have been treating for almost 3 months now, one month on IV Rocephin, and my leg issues persist. Other symptoms have improved such as headaches, itchiness, tremors, shoulder and neck tightness/pain, awkward gait/muscle weakness.

I'm curious if anyone else has brain lesions similar to what I have. I am younger than 50. No diabetes, I was in perfect shape before my symptoms started, no smoking, minimal alcohol intake, etc. I have been told by two MS specialist I do not have MS. They could only confirm my Small Fiber neuropathy diagnosis, but they could not give an explanation as to why I have it. That is when I decided to seek out an LLMD.

Thank you.

Ingenix: Positive band 41 and 58 only
DNA Connexions: Positive for Lyme and Bart
Doxy, Rifampin, IV Rocephin, Samento, Banderol
Buhner Protocol[img][url]

Post Edited (oddity) : 4/24/2017 12:53:37 PM (GMT-6)

Posted 4/24/2017 6:42 PM (GMT 0)
oddity - The link doesn't show any images.

I didn't have lesions when my brain was checked...but it was a 'regular' mri. not looking for plaque.
Is there a specific type of mri for seeing plaque?



How long have you been on the Rifampin? I'm suspecting Bart may be the culprit.

You've had symptoms improve...you just need to stay the course...it will take longer.
The nerves take a longer time to heal.
Posted 4/24/2017 6:53 PM (GMT 0)
It's great that your symptoms are improving. Sometimes it takes time, and various rotations of antimicrobials.

I also can't access the pictures you posted. But I have heard of quite a few cases where neuro-lyme was causing brain lesions and remember reading that in many of those cases the lesions resolved after effective antimicrobial treatments.

I think Girlie is right, the neuropathy can take longer to resolve but hopefully over time with effective therapies should resolve!
Posted 4/24/2017 6:56 PM (GMT 0)
I tried to add a different link. You may need to cut and paste to get it to work.

I have been on Rifampin since the beginning of January.

The MRI was done on a 3T machine following an MS protocol.

It's a tough diagnosis especially when my family members are questioning it more than me and scoffing at all the money I am spending to try and get my life back. I'm sure many on this board can relate.
Posted 4/24/2017 7:03 PM (GMT 0)
My son (who is 7) has an MRI with 5x as many "lesions" as your MRI all over his frontal lobe, in fact (he was born with it most likely). Several ER doctors who saw it called it "remarkable" and not in a good way and were horrified. Didn't help though none believed it was lyme, dnaconnexions saved us there.
Posted 4/24/2017 7:05 PM (GMT 0)
Definitely - neurolyme can cause brain lesions. that's why it's often misdiagnosed as MS.

You're fortunate you didn't get that diagnosis...and have the waters muddied.

I'm sorry your family isn't supportive. I would ask them if they'd rather you had an MS diagnosis...which means no effective treatment...or lyme - which can be treated.

The link is working, oddity...but it's not showing your images. It's just showing the home page of the site.
Posted 4/24/2017 7:07 PM (GMT 0)
Okay - it's showing the images now.

So those white posts are the plaque I'm assuming...
Posted 4/24/2017 7:07 PM (GMT 0)
It's good you found this out when he was 7. That's when I was first bitten by a tick. Maybe my lesions have been lingering for all these years along with Lyme and co. It sounds like your son has done well with treatment. If so, that is tremendous. It gives me hope.
Posted 4/24/2017 7:11 PM (GMT 0)

Girlie said...
Okay - it's showing the images now.

So those white posts are the plaque I'm assuming...

Looks like you have to click on the "back to album" and then you can see the two images more clearly. Yes, lots of white specs scattered throughout both hemispheres. More frontal.
Posted 4/24/2017 7:20 PM (GMT 0)
Keep having hope oddity! It's very encouraging that you have already seen improvements.

I think I've had the infections since I was a kid, lowly symptomatic for many years but high-functioning. I got mono at 24 and that was the trigger for the underlying tick borne infections, that is my general hypothesis, def a pattern I've read about in other patient cases. I had a few lesions in my mri (many years ago) but haven't had it rechecked. My guess is they the lesions have resolved or improved as I've made my way through treatment and as other symptoms have improved.

I'm sorry that your family is not supportive. That is extremely difficult, we need as much support as we can through these journeys, but there are so many cases where family turns their back on the patient. There's so much murkiness, controversy around these diseases that patients often get dismissed and disrespected not only by doctors but by family and friends. Given what the status quo is on these diseases within the medical field it is hard for the general population to take a patient's word on what they are going through with these health conditions/symptoms because it is not part of status quo mainstream medical views. If I hadn't gone through this I'd likely have a hard time believing these scenarios myself.

Keep hanging in there! I was lucky to have my family support me, but I know many patients who find a deep well of support from online patient communities and it buttresses them through their difficult journey. Can fill the vacuum if family is not providing any emotional support. I mean, that is still very difficult but at least it is nice knowing some people have empathy for your journey. This site's lyme forum is amazing and has helped me a lot in so many ways: support, information, advice, allowed me an avenue to vent or share my worries and frustrations.
Posted 4/24/2017 7:26 PM (GMT 0)

abenamou said...
My son (who is 7) has an MRI with 5x as many "lesions" as your MRI all over his frontal lobe, in fact (he was born with it most likely). Several ER doctors who saw it called it "remarkable" and not in a good way and were horrified. Didn't help though none believed it was lyme, dnaconnexions saved us there.

How is your son doing now, abenamou?

How long has he been in treatment?
Posted 4/24/2017 7:42 PM (GMT 0)

sebreg said...
Keep having hope oddity! It's very encouraging that you have already seen improvements.

I think I've had the infections since I was a kid, lowly symptomatic for many years but high-functioning. I got mono at 24 and that was the trigger for the underlying tick borne infections, that is my general hypothesis, def a pattern I've read about in other patient cases. I had a few lesions in my mri (many years ago) but haven't had it rechecked. My guess is they the lesions have resolved or improved as I've made my way through treatment and as other symptoms have improved.

I'm sorry that your family is not supportive. That is extremely difficult, we need as much support as we can through these journeys, but there are so many cases where family turns their back on the patient. There's so much murkiness, controversy around these diseases that patients often get dismissed and disrespected not only by doctors but by family and friends. Given what the status quo is on these diseases within the medical field it is hard for the general population to take a patient's word on what they are going through with these health conditions/symptoms because it is not part of status quo mainstream medical views. If I hadn't gone through this I'd likely have a hard time believing these scenarios myself.

Keep hanging in there! I was lucky to have my family support me, but I know many patients who find a deep well of support from online patient communities and it buttresses them through their difficult journey. Can fill the vacuum if family is not providing any emotional support. I mean, that is still very difficult but at least it is nice knowing some people have empathy for your journey. This site's lyme forum is amazing and has helped me a lot in so many ways: support, information, advice, allowed me an avenue to vent or share my worries and frustrations.

At this point all I can do is keep hanging on. I appreciate the supportive words.
Posted 4/24/2017 9:37 PM (GMT 0)

abenamou said...
My son (who is 7) has an MRI with 5x as many "lesions" as your MRI all over his frontal lobe, in fact (he was born with it most likely). Several ER doctors who saw it called it "remarkable" and not in a good way and were horrified. Didn't help though none believed it was lyme, dnaconnexions saved us there.

Abenamou,

I had a question for you. I take it your son was negative with the Ingenix testing is that why you went for the DNAConexxions test? Are you seeing improvement in his condition? Are you treating with Antibiotics or just herbs or both? Was he positive for just Lyme or are there co-infections involved?
Posted 4/25/2017 2:57 AM (GMT 0)
Hi there, yeah negative with hospital tests - not IGenX per-se. Yes absolutely, most symptoms resolved within 2 days of IV Rosephin. Now that IV is removed we're seeing some relapse with the oral replacement but manageable (so far) with anti-inflamatory medicine. So far the only herb is Grapfruit Seed Extract for cysts, the rest is all antibiotics. We have the 3 B's unfortunately, so treating all 3. DNA connexions positive for 2 and 1 clinical diagnosis, this was passed from mom at birth.

We're on month 4 so hopefully half-way through we'll see, treat until he's better is what the doctor will do.
Posted 4/25/2017 5:51 AM (GMT 0)
Oddity-I had a brain MRI done 8 years ago and I'm 54 now. I had it done prior to having major cervical spinal surgery because the neurosurgeon wanted to make sure that there wasn't another piece to the puzzle so to speak. I just spent the last half hour searching my pc looking through my medical records. I have them since I fired my Internist since he was of the Lyme isn't real mindset.

The neurosurgeon told me that I had some small areas of white matter but that wasn't all that unusual and it wasn't a concern.
What the confidential record he sent my internist states is:MRI of brain shows diffuse white matter changes consistent with long standing vasculopathy. (long standing vasculopathy was due to endless migraines from severe damage to my neck)
This was 100% for sure pre Lyme. I was (am?) extremely intelligent. The white spots had zero effect on my intellect. Lyme has sure had fun messing with it though.
Posted 4/25/2017 10:27 PM (GMT 0)

abenamou said...
Hi there, yeah negative with hospital tests - not IGenX per-se. Yes absolutely, most symptoms resolved within 2 days of IV Rosephin. Now that IV is removed we're seeing some relapse with the oral replacement but manageable (so far) with anti-inflamatory medicine. So far the only herb is Grapfruit Seed Extract for cysts, the rest is all antibiotics. We have the 3 B's unfortunately, so treating all 3. DNA connexions positive for 2 and 1 clinical diagnosis, this was passed from mom at birth.

We're on month 4 so hopefully half-way through we'll see, treat until he's better is what the doctor will do.

2 Days with IV Rocephin, that's great! I've heard about Grapefruit Seed Extract, I may have to try that.
DNA Connexions is all I have to go on, but my doctor swears by it and from what you are saying there is no reason to doubt the test. Thank you.
Posted 4/25/2017 10:34 PM (GMT 0)

jrpsf said...
Oddity-I had a brain MRI done 8 years ago and I'm 54 now. I had it done prior to having major cervical spinal surgery because the neurosurgeon wanted to make sure that there wasn't another piece to the puzzle so to speak. I just spent the last half hour searching my pc looking through my medical records. I have them since I fired my Internist since he was of the Lyme isn't real mindset.

The neurosurgeon told me that I had some small areas of white matter but that wasn't all that unusual and it wasn't a concern.
What the confidential record he sent my internist states is:MRI of brain shows diffuse white matter changes consistent with long standing vasculopathy. (long standing vasculopathy was due to endless migraines from severe damage to my neck)
This was 100% for sure pre Lyme. I was (am?) extremely intelligent. The white spots had zero effect on my intellect. Lyme has sure had fun messing with it though.

Yes, but you have a reason for your white matter changes, migraines due to neck issues. I can't recall ever having a migraine. I did play football in HS, so maybe that is the reason for the spots. And some people just get them for no reason at all. I'm in the medical field and I get to see a fair share of MRI reports. People our age do get them for no good reason. It's amazing how often the neurologist never even tells the patient the MRI findings. The doctor just tells them they did not find anything of significance.
Posted 4/26/2017 1:45 AM (GMT 0)
Thanks, DNA connexions was the only thing that helped us. Don't ignore clinical symptoms though it missed Bart but got Babesia and Lyme. But yeah zero reason to doubt the test at all, no false positives really just false negatives with it, in fact the best test IMO out there just reading more how it works (they use an online databank of DNA for validation). Good luck!
Posted 4/26/2017 2:33 AM (GMT 0)

abenamou said...
Thanks, DNA connexions was the only thing that helped us. Don't ignore clinical symptoms though it missed Bart but got Babesia and Lyme. But yeah zero reason to doubt the test at all, no false positives really just false negatives with it, in fact the best test IMO out there just reading more how it works (they use an online databank of DNA for validation). Good luck!

You are the first to mention validations done by DNA Connexions. I remember after my test came back positive I was searching online to learn all I could about the test. I came across a video by this LLMD Dr. Marty Ross stating he could not couch vouch for the test because they had not done the proper validations. I can't tell you how discouraging this video was.
But, you're right, I think a clinical diagnosis is more important than any of these tests.
Posted 4/26/2017 3:18 AM (GMT 0)
Ah yes, it's really hard to find but it's on their site in the FAQ section - there is a mention of the online tool (B.L.A.S.T) they use to validate their findings. I had to google and found it's an amazing data bank of DNA researchers can use to validate probability of matches (you can even upload your own sequence, it's all in the cloud). Very futuristic stuff... I think eventually (my hope) is we can all do this at home with some sort of smart device, imagine that in the next 5-10 years, this nonsense of testing will be a thing of the past
Posted 5/15/2017 6:16 PM (GMT 0)
Hi there, I'm sorry if this has been asked already. I am having increased difficulty with concentration so i didnt read all the posts. I have had an MRI that revealed a Chiari Malformation. I am working with a LLMD and he wanted a copy of my MRI and wanted to know if it was a 2D or 3D. So i called the place where I had it done and kept being told that it was neither. Then finally I talked to a "Tech" that said it was an MRI that took 3 pictures from 3 different angles. ??? I really have NO FAITH in the medical community where i live. Can anyone shed some light on what "kind" of MRI is the best to have done? MY LLMD is wanting a copy so he can use "NeuroQuant" to look for swelling. Will a 2D or 3D show plaques?? Thanks everyone!
Posted 5/15/2017 6:27 PM (GMT 0)
Hi Millieknox - welcome to our community!

Does your LLMD think that the brain stem may have swelling from Lyme disease...which is causing it to appear as Chiari Malformation?
I had an mri to look for Chiari....but not sure if it was 2D or 3D.


Please feel free to share your 'story' with us.

We encourage all new members to read through the thread at the top of the page titled: "New to Lyme?..Start Here!"
Posted 5/15/2017 6:40 PM (GMT 0)
Lyme and the fun coinfections put 5 granulomas on my spleen and 1 on my lung... I am 30. I'd definitely say Lyme caused lesions.

I'd bet pathogens cause a good many symptoms that are misdiagnosed. We all know modern medicine treats symptoms and often ignores the root cause.

My father in law (58 years old) has Lupus with lesions on his liver, lungs and brain he is in horrible shape. I told him to get a full viral panel and Lyme test.

My aunt has lupus since 38 years old (she is now 67) and started eating paleo and exercising, and supplementing and the doctor has told her that her lupus "burned out" and has been pulled off her lupus meds/chemo many years ago. She's in better shape than me.
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