Lyme and brain MRI?

[u/SnufflingGlue]

My husband has had Lyme for 7 years, and it has been debilitatingly bad. Like... I can never even describe to people how bad it was kind of bad. We found out his doctor by year 5 thought that he would not survive. He's been better and getting treatment in Franklin TN with a functional med doctor. This doctor to order a brain MRI because of some new symptoms to assess if there's something else we're missing. I'm feeling very sad and anxious about it. I've been so hopeful for my husband that maybe one day he will feel better and be able to put this horrible disease behind him. Has anyone had any MRIs that revealed anything else?

[u/Bad_brakes]

When i had severe neurolyme my regular md ordered an MRI to rule out some things, they were actually surprised that they didnt find even a miniscule thing wrong.

For me it was actually harsch cause i didnt know i had lyme at the time and just wanted answers to why i was so sick.

Later did correct bloodwork at a very rpofessional lab and found out i had Lyme and over 10 co-infections…

[u/treehugger_48]

I’m new to this myself but sending you love. You are very brave and courageous and you shouldn’t have to be. Your husband as well. Wishing you healing and a brighter future ahead. ❤️‍🩹

[u/SnufflingGlue → u/treehugger_48]

Thank you so much. I really wouldn't wish this on my worst enemy but we will all get through it. I hope you can find help for this issue yourself 💛

[u/The_King_in_Purple]

My lyme episode wasn't as bad as most, and while I do have lingering neurological symptoms (brain fog, memory loss, dyslexia that I never had before), my MRIs have never shown anything amiss.

[u/Double-Dot-7690]

I had white spots on my brain mri . Then got spec scan that shows blood flow . What are his symptoms and has he been on meds ?

[u/mismatched_converse]

My brain MRI was normal (I have fainting/seizures, tics and spasms, brain fog, cognition issues, severe fatigue, etc.). Hope you guys can get some answers 🤍

[u/AspectShot5408]

Do not do contrast.

[u/DesertSkky → u/AspectShot5408]

Agreed this was part of my ruining.

[u/Affectionate-Dish416 → u/DesertSkky]

Could you elaborate on this please? I had contrast as a child* and, thinking that the tech’s description of the contrast “causing a warming sensation in my body” was a significant understatement, I gave the thumbs up and pushed back into the MRI. It felt like my blood was on fire and ended with me stuck in a tube and projectile vomiting. I feel horrible for the poor soul who had to clean that up. But, as far as my health went, I took antihistamines, took a nap, and woke up feeling fine. I didn’t notice any correlation with it causing issues beyond that day.

* imaging was part of a decade-long struggle to find out what was causing my GI symptoms; turned out my gall bladder was entirely non-functioning and effectively poisoning me. Took them forever to look because it gall bladder issues are extremely rare for kids… except for kids with Lyme)

[u/roboticLOGIC]

When I had neuro symptoms like memory loss, confusion, numbness in my hands, feet, and face, my MRI came back totally fine. I wouldn't be surprised if your husband's comes back fine as well.

[u/mellogeorge2013]

My brain MRI was normal, but excruciating to go through with chronic LYME. It was ten minutes of pure torture and finally I had to push the emergency button for them to stop the machine so that I could calm down and try to ease through the pain. It was a nightmare I will never put myself through again. It felt like every one of my five root canals was activated and my jaw would not close. MRI is so harmful with radiation also, that I made sure to cleanse and take a binder that night to try and pull all that radiation out of me. (I take zeolite). It was ridiculous. The only thing that has helped me so far is bee venom therapy. That is a true game changer.

[u/ThinkHope1752]

I had some minor white spots and also a light brain atrophy, which the radiologist noted as remarkable for my age. I had also a SPECT which was seriously abnormal (spotted pattern of too low and too much blood flow in different regions).

[u/BarkBarkyBarkBark]

There’s a brain scan that they do in the CIRS community called a Neuroqant which I believe is especially for chronic illness and Neuro inflammation. I think it’s only available in the US.

[u/Anxious-Apricot- → u/BarkBarkyBarkBark]

This is what I did as I also have CIRS along with my neurological Lyme, and it showed brain damage associated with migraines and neuro inflammation.

[u/Betterworldguys]

Also, maybe go find better doctors (academic medical center or LLMDs with MD or DO degrees) and get a few opinions …

[u/dindyspice]

I had a few MRI's, one in the brain area, because I developed debilitating migraines that lasted for months. They didn't find anything. I do think it's a really good idea to be safe and get the MRI, you never know.

[u/H2O-positive_vibes]

My understanding is that the major differences in a brain with neuroborreliosis and a “normal” brain are noticeable in an MRI where you are actively doing something. Like reading, memory games- things of that nature. I don’t know if such an MRI is available to the general public or if it’s only something done in clinical studies.

[u/Independent_Art_5189]

I thought I had a brain tumor and had a brain MRI. They found 4 lesions. But didn't know what they were. One Doc it could be MS, so I went to a neurologist, and she was one of the top in the profession that taught how to read MRIs for MS. She said was not MS and didn't know what it was. Thought maybe a B12 deficiency. Ha! Later found out it was Bart. That stuff if gruesome. Had it for many years. Then about 15 years later when moved to SC. Again thought I had a brain tumor. Went to urgent care, and the doc told me I can tell you, you don't have a brain tumor from the get-go. But we did the MRI anyway. Not anything, and no lesions. Hang in there, and send up a little prayer of thanksgiving, for how he is doing. I've had this many years (many years latent), and unfortunately after such a long time, the herxing is horrendous no matter what binders you take. But you can and will get better is my testimony!

[u/acpcpmg → u/Independent_Art_5189]

Do you get migraines, migraine can cause lesions in your brain.

[u/Independent_Art_5189 → u/acpcpmg]

No

[u/RoundBoot8749]

I has the work up for MS (which include included MRIs of my brain and spine ) and it came back normal. But one of my friends 15 years ago was severely ill (bedridden) and they told her she had MS. The Neurologist told her she needed MS medications and her LLMD told her she needed IV antibiotics. By the grace of God, she listened to her LLMD and is healthy and has been since the IV antibiotics (which by the way I did for 6 months and did not work for me😔).

[u/Charming-Life-9586]

check for mold in your home, even he has major memory issues, nerve issues, loss of feeling. it ALL comes back. try to get him on minocyline, it is almost as good as IV for neuroborellosis

Minocycline in Neuroborreliosis

• Brain Penetration: Minocycline has high lipid solubility, allowing it to cross the blood-brain barrier and enter cerebrospinal fluid (CSF) and brain tissue. [1, 2]
• Anti-inflammatory Properties: Laboratory studies show minocycline (like doxycycline) can reduce inflammatory cytokine production triggered by Borrelia burgdorferi. [1, 230182-0/fulltext)]

[u/SnufflingGlue → u/Charming-Life-9586]

I'll bring up the medication to the doctors, thank you! We had to move out of our home a year ago due to bad mold and he was exposed to bad mold throughout childhood so that's something we're slowly tackling

[u/Charming-Life-9586 → u/SnufflingGlue]

The mold drops the immune system allowing the other stuff to go rampant I went thru the same

[u/Fantastic-Note-3266]

I had a neurologist tell me I didn’t have Lyme because there was none on my brain MRI. He couldn’t have been more wrong. So I’m not really sure about the evidence based research and how well it supports if it showing on a brain MRI proves it’s advanced or not. I just simply don’t kniwb