Thanks!
Marian...a worried Mom
 

It's surely the Lyme. Describes me exactly.

My brain seems to be the last thing getting better and it is very slow.

The IV Rocephin/Biaxin Xl and then followed by months on Spectracef seem to be what finally started clearing my head. Around the time the fog started to clear, I also started on alpha lipoic acid and grape seed extract.

Alpha Lipoic Acid: "Preserve brain function in aging adults. Results from animal studies indicate that alpha-lipoic acid may improve long-term memory. Much remains to be learned about whether this occurs in humans, but it may be worth trying this powerful antioxidant when a disease such as Alzheimer's starts to erode memory. In addition, alpha-lipoic acid holds promise for preserving brain cells following a stroke or other type of trauma that restricts blood flow to the brain."...http://www.wholehealthmd.com/refshelf/substances_view/1,1525,10002,00.html#Health_Benefits

Grape seed extract has been proven to break through the blood brain barrier and protect the brain and nerve tissue. It is anti-viral, anti-inflammatory and anti-bacterial. You can read more here: http://www.bodybuildingforyou.com/health-supplements/grape-seed-extract.htm

I've gotten to the point where I actually have some clear head days that allow me to concentrate and organize some things. It's not all the time though.

Jordan is lucky to have such a caring mom!

---Nancy

IV Doxy and Rocephin is the current treatment..Some improvement but obsessive compulsive is horrible..

Zoloft and Risperdal not doing much. Valium is a rescue med..

I think it isn't all the lyme..She is also positive for Bartonella and from what I have read, it is probably the Bart causing the psych problems..You do need something that can cross the BBB. The herx's here are all psych problems..She doesn't metabolize the neurotoxins. We have re-introduced some Welchol. She has trouble with the Cholosteramine.

My prayers continue to be with you.
 

I noticed you mentioned suicidal and Zoloft.

Just wanted to let you know that anti depressants depressed me. Thoughts of how I could kill myself went away when I stopped the anti depressants. Srange, but true.

I have tried them several times and several kinds throughout this lyme journey.

Marian,

I was teaching an anger managment class before getting the bug. I needed my own class after battling this disease.

I had to step outside at a dentist office when I first started battling this due to anger that I hadn't never experienced before.

I had to break down the problem....and there were many.

1. I couldn't read the form and fill it out.
2. I had pushed myself just walking into the office and was totally drained.
3. There were too many people in the office and this affected me. (As a teacher, I always looked to see if the classroom management problem was noise or movement) In this case the problem was both at the dentist office. A TV was in the waiting room. There was lots of activity in the waiting room.

4. Temperature also affects me and it was very hot that day.

Since then, I have noticed that I need to stay quiet and to myself for the most part.

There are times when I am strong enough to be around people but those are few and far between.

I recalled one of my students giving himself time out. He would go sit outside the classroom door.

I now understand why he did that. I had given him too much information to process too fast and he needed to take a break.

It was quiet outside the door and there wasn't any movement or information to process.

I thought it was pretty cool that he had found a way to keep the frustration level from over flowing at the time. I could see he was getting frustrated and angry. But, until I had lyme....I didn't understand it.

He was deaf. I was signing and speaking as I taught the lessons. His obstacle was a little different to overcome. But, I certainly think of him now when I give myself time out.

I also have to take it slow and easy. I can no longer think 100 things at once or do several things at once.

I also have had to ask people to stop talking as I could no longer take in what they were saying. This one is difficult to explain. But, if they continue to talk...it is really hard on me. I have no patience. And don't quit understand why. I told one person it was as if she was hitting me over the head with each word for lack of a better way to explain it or understand it.

I also will close my eyes to help me take in what people are saying when my resources are that low. Cutting out as my as possible that my body has to deal with seems to help.

If they speak slower. It sometimes help. The sound of their voice can also been an obstacle. Some voices are easier to listen to than others.

Light is a factor at times also.

As a child, I would think this would be hard to figure out.

I was doing well. Went to a restaurant with a couple of other people and had to remove myself from the restaurant. Once I got to a quiet place outside of the restaurant, my body started to recover. But, it took time.

The movement and the noise in the restaurant was too much. The lady in back of me had a voice that wasn't working for me. The lady in front of me also was talking. The background noise in general was too much. The movement of people in the restaurant.

I did feel the anger level rising. I went outside, laid on down, closed my eyes and I started to feel human again after a while.

I don't know what is going on in the body at this time, but it certainly can't deal with what is going on with the outside stimuli. It shuts down.

This was just one time out of about 8 times of eating at this restaurant.

I just chalked it up to be too low on reserves that day to eat.

I hope this helps.

Thanks SOOO much for the long post, and from everyone else who responded. We're seeing Dr. S (Hermitage) again in a week and I'd like to discuss an abx switch. Apparently there are no co-infections as per Bowen. Any suggestions? (He's already taking multiple supplements for brain function and memory plus Reminyl).

Marian

[This message has been edited by mbroderick (edited 29 September 2004).]
 

Do you have dosages for grape seed extract and alpha lipoic acid? I spoke with someone a while ago who was taking 900 mg/day of alpha lipoic but the stuff is so expensive! Isn't grape seed extract an anti-oxidant? Will this help brain function? Jordan and I are already taking 300 mg/day of CoQ10.
 

What Kam describes at the dentist office is what happened to me when I went for the psych exam for SS. It is also what happens to me when I go to church. I appreciate the explanation that it is like being hit over the head with the words.

I wear earplugs and dark glasses but mostly I stay home by myself with no tv, radio, etc.

Marian, hope your son improves. I assure you it is VERY hard on him to be exposed to stimuli of any kind. If he is like me, this even includes positive stimuli, like laughing. Stimuli actually causes me pain.

Cathy