Active Brainstem Lesion

Hi all.

I usually post on the Lyme forum. But, as this point, no one has any real answers about what is going on.

I had been diagnosed with Lyme disease and coinfections with a positive western blot last year. I also recently found that I have an HLA gene which makes me susceptible to mold toxins. And I have found that my hvac system had toxic mold in it. I have taken care of the mold and am treating the illness presently.

My initial issue was found last year. I started getting very frequent migraines with aura after a tick bite I got in 2016. I was soon getting them a couple times a week. Then my balance and coordination started being affected. Had my first MRI last year in August and they found 8 lesions in non specific areas. But an enhancing lesion in my midbrain which is what most of my doc's are saying is causing the balance issues.

My concern is how long before the inflammation stops. I had the initial MRI in August and have had 3 more since then, the last one being in January. Nothing has really changed with the lesion. Same size, same inflammation. I am overdue to get another MRI. Will be getting one next week. But, what the hell do I have to do to get the lesion to become inactive... The lesion itself is quite small. 6mm. But the location and the inflammation in particular, are causing me a lot of disability.

Anything I can do to help with this inflammation while waiting to see if mold or lyme treatments help I have went on a very strict diet to no avail. Thinking of adding high concentrated fish oil and cutting out eggs as well. So far, I have cut out gluten, dairy, sugar, started a no amylose diet as well. I've already lost 35 pounds cause of my diet.

Thank you in advance.

Hoagie,

Ask your rheumatologist or primary care doctor to refer you to a neurologist who can determine whether or not you would benefit from a course of steroid infustion or medication. Lyme disease is no picnic but it can be cured if caught early. I wish you the best and I hope you get the care you deserve. I urge people the care you need or is determined to be viable for lyme disease. I do not know enough about Lyme disease but I do know that even though people are diagnosed with one illness, it does not mean other illnesses aren't possible. Bon chance!