does anyone just have brain symptoms?

Hi
I don't post much, but I have a question that's been bothering me.
My main and basically only symptom has been brain fog. It's actually worse than brain fog...it's more like half my brain doesn't work..the important part!! I can't think at all...I feel like I need a babysitter!
I was feeling very sick before the beginning of treatment and had light/sound sensitivity, and it felt like the life had been drained out of me, but most of that has cleared.
I've been in treatment since July and my brain is just as bad as it's ever been.
Everyone has expected me to see some improvement by now, so it's got me wondering if something else is going on.
I have been very fortunate that I haven't had any pain, but I find that kind of weird. I thought lyme usually causes a lot of pain.
If I could get some clearing in my thinking, I think I would be able to make some real progress, but it scares me so much I don't like to do much.
Anyone else have this problem?
Thanks

I had a positive Igenex test, although not CDC pos. and I do see a LLMD.

Is this something that is permanent? Wow a year with very little improvement is too scary to me. I can't function like this at all. I haven't had a SPECT scan yet, but did have a clean MRI. Does your doctor expect you to improve?

2long
you really need to read some books about the symtons of lyme. You can get them at Barns and Noble. I listed on in a post at is good and not depressing. Coping with Lyme.
I know it is hard to read. But yes, lyme effects the brain in a big way. And if not treated..it gets much worse. I too was out to lunch. Read others post. And read in introductions on the forum.
Personally I wrote about how bad I was. So without going into all of the gory details...red some of my past post.
And get a book. It will also put you at ease to know that you are not crazy, and also to inform you of what too be preparred for down the road.

My neurological symptoms hit very early for me. My aches and pains have never been that much of an issue for me. Fatigue and insomnia have always been a major problem. I have a co-infection of Babesia as well, which plays a role. People are affected in different ways.

I'm in this boat with you guys as well. I don't necessarily describe it as "brain fog". My description is "head and neck pain". So........... the big question, what is the best treatment protocol for breaking the blood brain barrier. Getting in there and getting rid of the bacteria in the head??? I see that one poster had success with adderall. But is that just masking the pain? Does is adderall kill the bacteria?

What kills the bacteria in the head best?

Chief

The Adderall does nothing for the pain. But it did lift the brain fog for me. I can actually concentrate and think for a change. Feels very good to have a brain again!

2Long,

To answer your question they don't know if it is permanent. My LLMD is a little puzzled because at this point he thinks I should have had greater improvement. I would say I have had only about 50% improvement in systoms(I had 5 months IV Rocephin). I am suppose to start a new abx combo next week and if he does not see any further improvement he wants to start searching for other causes. I pray every day that this not permanent.

I was bit in the back of the neck right near hair line. which is why I think my symptoms are so neuro.

The only side effects from the Adderall have been a clear head, more energy, feel happier, better concentration and I didn't need any naps today. And I only took one even though it says I can take 2 a day.

LupnerRN,

I do not think I have any Coinfections. I have been tested many times. Also my sysptoms are not really consistent with any coinfections.

Just a word of caution on Adderall. First, Adderall is amphetamine, a controlled substance. I have been on Adderall XR since before I "came down" with Lyme and Co. Since then, I find it to be less effective but still I am able to focus more. However there are a lot of questions I have based on knowledge I have of the Lyme Disease complex, and the action of the Adderall XR.

The action of Adderall "is thought to" alter dopamine (sp?) function in the brain. I know it raises resting heart rate 10-15 beats per minute, and makes me more alert. I think the added alertness (stress) influences cortisol production too, as a cortisol saliva sample showed me to have 4 times the normal cortisol burden. We all know the adrenals are an important considreration in immune function and Bb treatment.

I know it allows me to function at work and at home, but I wonder if it's action is not counterproductive in the end. I suppose just like all meds there are pros and cons...

2Long4this,

My Doctor really does not have any other ideas. He wants to give the abx another few months and if there is no improvement he wants to send me to a diagnostic clinic near where I live. This is why I really wish the could come up with some better testing for this disease.

I have had 4 months into treatment, which have subsided for the most part since i dropped the meprone. I take Adderall XR (extended release) at 6 a.m. and go to bed at 10 p.m.. I do believe that I sleep much better after 1 a.m. though. Like I said I am concerned with its role in immune function, and when I gone sans Adderall I have felt additional fatigue and perhaps depression - which could be withdrawal of part part of Lyme and Co symptoms.

Still no real answers on this one.... how do we get the bacteria out of the head?

Chief