I was wondering-for those of you who have neurological lyme-or just have prblems w. remembering things- or if your in a conversaion adn yout trying to get out something and you forget within seconds....

Are there any supplements or meds people hve tried to take to see if it helps for that reason??

Jenn
 

Plaquenil/Zithromax has helped me the most so far, but I would love to get my memory back. I hate that...forgetting in mid-sentence or walking into a room to get something..and then bam..I forget!

Beverly

That is the worst of all-or then another example-going to the doctors office and forgetting what you were going to say-and you walk out and then remember or get home and then remember!!

I just hope that when the Lyme is gone it comes back-but since I have the neurological chronic lyme I'm not sure that it ever will....

Has anyone been able to get their memory back??

Jenn

 

It's frustrating to have all those thoughts with in the brain and they get lost on their way out.

If we all got a nickel for every time we forgot something, we all will be rich.

Remembering, going to get gas for the lawn mower, only to find out later I forgot to fill up the gas container but the car got a full tank of gas.

How many time while taking with someone, they give you a blank stare or say ``Are you going to answer'', while you thought you gave the right response or answered their question?

After becoming aware of these phenomena, you might notice that the thoughts are there, but do not come out and if they do, it came out wrong. Most of the time, you realize it after it happens. It happens all the time with people who have ADD.

My LD says after treatment, it could take months or year(s) for the brain to repair itself. He indicated that most of symptoms would go away. Since I had lyme for so long (46 yrs), there could be some residual damage.

When I was first treated for lyme 2 years ago, after the ABXs, things appeared to be normal. Was working again and all the symptoms appeared to be gone. Slowly things went downhill. This past summer, it was diagnosed as nuro. Now I'm fighting for my life.

How to prevent it, try to make yourself aware of the symptoms, eat a good healthy diet (plenty of raw fruit and vegetables), high quality supplements (freezed dried are the best), get ride of the lyme or get it under control, play some mind games, are only few of the suggestion that I can offer right now.

Alex

[This message has been edited by Alex1950 (edited 11 November 2004).]
 

I truly thought I was going crazy until I read this. It matches my cognitive deficits EXACTLY. I found this article truly validating, and the best one I have ever seen. I even took it to my neuropsychologist when I saw one for cognitive testing. And to the IME neuropsychologist my LTD made me attend. Because I wanted them to read it to learn about findings on evaulations done by true Lyme-literate neuropsychologists.

Hope this helps you as much as it helped me.
 

I haven't even had my first appt with a LLMD yet. my biggest fear is that I'll approach that the way that I approach everything else right now- scatterbrained.

The other day I found a moldy (opened) block of cheddar cheese in the pantry and the breakfast cereal was in the refrigerator.

Have you found any relief? Do you have any other tips for someone that's in exactly the same boat?
 

I was talking to the NP at the doc's office just the other day about these very issues, and she said what I experience is quite common with Lyme patients. It is hard for me to understand how intellectual skills can fluctuate so much. But, guess it could be worse. I could be totally stupid all the time.

Right now I have a MS degree and 3 certifications in my field I cannot use due to my brain problems. I always have hope that I will get smart, and stay smart, so I can go back to doing what I did for 20 years. For now, it's the world of SSD, and LTD, contributing to my family as best I can, and doing everything I can to maximize my recovery.

Try to organize things best that you can. Carry a small notebook in your back pocket and jot things down as soon as you think of them. Because when you finally think of it again, may be too late. If you are having difficulty coming to terms with your present functioning levels, seek help of a psychologist to work through some of this. Consider seeing a neuropsychologist to have cognitive testing done to document disability issues if you are having difficulty with work. I pushed it far too hard and tried to hang in there with my job, and now regret it. In the process of being too stubborn to see how poorly I was functioning, I ended up damaging both my health and my professional reputation.

I get some limited success using Provigil, which is a psychostimulant used for narcolepsy. There are several supplements you could try, such as Enada NADH and Cordyceps, which some people will tell you work pretty well. Sometimes they work for me, sometimes not.

Good luck with this. For anyone who has any other suggestions, please post them, as I wouold also like to have some new ideas.

Connie

When I first started reading it, I thought it would be fun to come up with a label for the neuro lyme stuff we deal with regarding memory.

You've heard of senior moments...well.....I don't know what to call this lyme stuff, but it would be fun to label it.

It seems to bother me the most when I talk to someone when I am out and about and they mention coming to my house at one time.

I find it unsettling to not recall them being at my house. That just doesn't seem possible...but it is happening.

Then there is the danger type of goofs....when I put a pot of water on for tea and forget about it, leave the house and come back to near trouble and a pot I can no longer use.

I do plan on using a timer next time and not doing anything until I have turned the water off to prevent this.

It seems to happen when I try to multi task.

Then there is the delayed processing of crossing the street in my power chair.

I will be half way out or pulled out in front of a bus, truck, etc. when my mind finally kicks in and says to me...you did it again bozo you need to wait for me before you cross that street.

Thankfully I live in a patient friendly town. It was a car full of teenage boys making a fast turn off the main street into a side street that kept me home for several days afterwards and still remind me to not be out and about when the brain is not working or if I am to keep it under one hour before the mind goes.