So, it's confirmed. I have Lyme in my brain. Now what?

I had an MRI this week and it showed positive for Lyme. I had thought so much from symptoms, and am working on documentation every step of the way. This is kinda scary, even though i've read the little buggers get into brain fluids fairly soon (a few months) after onset.

I'm still trying to find a LLD, or figure out how to pay for the Center for Integrative Medicine in Raleigh, NC.

Has anyone had a posiive MRI, and what did you do about it?

Thanks so much, I'm dealing with this completely all by myself and feel so . . . alone and disengaged from normal life, even though I have to work to live. Google and FIDO are my friends.

VIki:
I'm sorry you are dealing with this, but with IV antibiotic treatment many people recover from this. Did you get some white spots or some lines on your MRI--is this how you know you have lyme in your brain?

With IV antibiotics (which should be covered by your insurance in this case, since oral antibiotics can't cross the brain-blood barrier) the brain does most often heal, so just stay positive and keep your anxiety level low and get on IV antibiotics treatment asap. It is better to know where the lyme is and get treatment if it's in the brain. I think you are lucky you found out about it sooner than later. Were you sick for long? I wonder how many of us have the bacteria in the brain and just don't know it!

Any ID doc should help you with IV antibiotics for this, they are not completely useless when you have lyme in your brain and you can prove it! If you feel further treatment is needed you can follow up with a LLMD, but they tend to have waiting lists. I would start getting treated ASAP if I were you.

The doctor that ordered the MRI should also prescribe the IV abx asap.

Any co-infections you know of?

Do you feel very sick? Are you sicker than some of the members here? I wonder how much worse someone with lyme in the brain feels compared to someone that has lyme but the bacteria is not in the brain? How are you feeling?

I would get on the doctor's case to order the IV antibiotics asap if I were you. I have seen stories with patients that had wholes in the brain from lyme and their brain completely healed after IV antibiotics. We are created with amazing healing capabilities, so try not to worry too much because I think many of us have it in the brain and just don't know it.

Post Edited (Simela1) : 3/14/2015 11:02:03 AM (GMT-6)

You don't need IV abx to recover from Lyme in the brain - I did it with herbs only- but what's more important is a good detoxing routine, as the herxes are super difficult when you have a lot of brain/cognitive issues.

I had all of these symptoms plus lesions on my brain:
Becoming lost in familiar locations when driving
Difficulty with simple calculations (e.g., balancing checkbook)
Difficulty expressing ideas in words
Difficulty moving your mouth to speak
Difficulty making decisions
Difficulty following directions while driving
Difficulty remembering names of objects
Difficulty remembering names of people
Difficulty recognizing faces
Difficulty following simple written instructions
Difficulty following complicated written instructions
Difficulty following simple oral (spoken) instructions
Difficulty following complicated oral (spoken) instructions
Difficulty integrating information (putting ideas together to form a complete picture or concept)
Difficulty putting tasks or things in proper sequence
Difficulty paying attention
Difficulty following a conversation when background noise is present
Difficulty making and/or retrieving memories (long/short-term memory deficits)
Difficulty understanding what you read
Easily distracted during a task
Feeling too disoriented to drive
Forgetting how to do routine things
Forgetting the use of common objects (such as, what to do with the shampoo when you are standing in the shower)
Forgetting how to get to familiar places
Impaired ability to concentrate
Losing your train of thought in the middle of a sentence
Losing track in the middle of a task (remembering what to do next)
Poor judgment
Switching left and right
Slowed and/or slurred speech
Stuttering; stammering
Transposition (reversal) of numbers, words and/or letters when you speak and/or speak
Word-finding difficulty
Using the wrong word

Plus I couldn't follow simple patterns either - like putting together shish-ka-bobs.

Push to keep your brain active - do puzzles of some type, talk, type all the things you can do to keep your brain active.

Detox like your life depends on it.

And find a treatment your body can tolerate, no matter whether it's pharma abx or herbs - they all work, it's just a matter of finding what your body will work with instead of against.

And know that you have all of us here to help you!!! So you aren't completely alone! (((((((HUGS)))))))

There are a few oral abx that cross the blood brain barrier - Minocycline is one of them. Other members with more knowledge about the abx would be better to answer that though - but I do know that I had Lyme in my brain and I healed not with abx, but with herbs, so I know that herbs cross that blood brain barrier as well - but the doc has to be very well versed in herbs to understand this. I relied on a Master Western Herbalist who was also a Master Chinese Medicine herbalist to find what would work.

And yes, detoxing only gets rid of the toxins, it can not kill bacteria.

No, I have not had any doc tell me that there was any "for sure" cause of my lesions - but I do have a copy of them on cd!! (LOL! I have my brain on a cd!! it's for easy reference, you know!! Giggle!) I had those symptoms for over a year, so I know that there was something very, very wrong, and since detoxing and Lyme treatment cleared up it......well, you know!! If it walks like a duck and quacks like a duck......

All any doc would tell me is that those lesions were there - I think there were 10 or 12 lesions. I would love to have another MRI done on my brain to find out what it looks like now, but I really don't have the money to pay for one.

I know that detoxing like a mad woman is what helped my brain function considerably. Then I needed treatment, because the bacteria was still in there and I had to continually detox like a mad woman (it was literally almost all I did all day long for months on end) to keep my brain functioning any at all. My hubby was having to tell me what to do each day or all I could do was sit on couch or in bed. No reading, no game playing, I didn't talk to anyone as speaking was so difficult - and I had no desire to talk about 'trivial' stuff. Treatment meant that I had to do less and less detoxing to keep my brain function.

At one time, I dropped off the forum for a couple of years because I couldn't figure out how to use the computer. Anything I read, I couldn't recall if I waited for more than 5 minutes to tell someone about it. Yet, I'm far from that now, so I did something right!! LOL!

So to clarify, I can't say that the lesions have been cleared, as I have not had an MRI to confirm it, but they symptoms say that they have been!

And Vikingqueen, please don't let these questions get you off track! You need to detox, get treatment and support! We are here to help support you and help you find what works for you!

It's my understanding also that you do not need IV abx for them to break the blood brain barrier.

Some practices may do IV's as their protocol but from what I've read it's only necessary for those whose systems can't handle oral abx.

I read up on every rx I'm given and the one thing they have all had in common is that they break the blood brain barrier.

Keep in mind that MRI technology is very dated. As expensive as it is, it is the inexpensive way for care providers to get a rough idea of what is going on inside our bodies. It is far from perfect as it is 20 plus year old technology. Even the more expensive CT mylogram isn't a perfect picture for care providers.

Buhner states that most of the herbs he recommends cross the blood-brain barrier: www.buhnerhealinglyme.com/symptoms/meningeal-burning/

An Infectious Disease specialist won't know how to deal with these infections any more than the Infectious Disease doctors here in the US - which is very little unless they have had sufficient training by ILADS (International Lyme and Associated Diseases Society).

i just suggested going to one if you cant find a llmd right away. with this evidence they should be able to start you on iv antibiotics with a better chance of it being covered by insurance. it's better than nothing if this person isnt even seeing a doctor for lyme right now.

I have it in my brain too (MRI showed couple of areas of inflammation - lesions??) and all my symptoms are neuro - after 18 months of various abx, including a month of IV, I've now just started minocycline, combined with rifampicin, so this is good news to hear it is effective at getting into the brain. I really need this treatment to work! :-(