[aquarelle]

In spite of having chronic lyme for a long time, I have a lot to be thankful for. Using integrative and alternative medical approach with my md, my cognitive, mood, as well as fibromyalgia, symptoms are now manageable.

But the scary thing that is happening is a slow-growing attitude of avoiding social contact, especially groups, that I used to enjoy. Over a couple of years I have dropped out of activities and friendships that I used to value. This is both frustrating and painful for me since I usually try to fight it, keep talking myself into trying again. But the pattern is clear in spite of my determination to resist this.

I have been doing some research about it lately online and find this kind of avoidance can happen to people whose lyme complications are neurological. It seems as if it's a new field, and no predictions can be made of a future course for this condition. And no one seems to know a remedy.

I have come onto this board because I am so frightened by my future if this continues. I live a relatively isolated life now. And that is very painful already. Most of my energy goes into taking care of my health as best I can. And keeping house and doing art, my one remaining pleasure.

So if anyone has any personal experience with this or medical information to share, please respond.

[WhiteFlower57]

Hi aquarelle,

I, too, have the hideous Lyme disease. I was diagnosed about a year ago. I have good days and bad days. But, I too, have become somewhat of a hermit in the last year. It seems as if a lot a people don't understand it (I sure didn't). Anyway, my husband I don't think was getting it and I had him read one of my books on the subject and after that, he got it. Have you been on any other message boards? There are some good ones and some of the people really know their stuff. Much more I do. Best wishes.

[aquarelle]

But, I too, have become somewhat of a hermit in the last year.

I'm sure we are not that unusual: since my first post I have realized that some of it is just emotional exhaustion, trying to do all I know to do--to feel as well as I can. Avoiding stress is central for me too, and often that means staying home or staying away from some social situations likely to be stress-producing. Yes it's partly an anti-social attitude but it's more complext than that.

Have you been on any other message boards?

I have, but not finding much there for me at this stage of my illness. The great thing about this board is the stickies at the top, with more neurological information than I have been able to find anywhere else. To understand is to start (at least) to accept.

Thanks for responding, White Flowers!

[Eve26]

My father has just been diagnosed with Lyme disease and shingles. At first we thought he had a spider bite, but then he began to start seeing double. He's now using a eyepatch to see straight. Now his ribs hurt and he can't move without being in horrible pain. How do we know if things are going to get worse?

[aquarelle]

Originally Posted by aquarelle

But the scary thing that is happening is a slow-growing attitude of avoiding social contact, especially groups, that I used to enjoy.

If you are interested in natural approaches, skip this!
A follow-up on my own post: my personal experiment since posting revealedthat taking high-quality doses of gingko and ginseng have made some difference in this scary tendency! These are herbs I have used a bit in the past, but restarting with higher doses seems to have good effects. I take the gingko almost everyday; with the ginseng once a week seems to work!

[snickersnake]

Aquarelle,

I agree that the neuro symptoms are to blame.

In the first 3 years of my illness, it was mainly fibromyalgia, arthritis, full-body pain, disabling fatigue, etc. In the 4th year, I got a huge load of other symptoms, including the neurological symptoms. (And I was finally diagnosed with Lyme during the 4th year.)

One of these is the "brain fog," which is a very mild way of putting this. I lose huge chunks of memory, I can't think of the right words to write or say, and I just can't do what I used to. I was a computer programmer (lead) and I have no idea how I used to do what I did. I also used to multitask very well, and now, if I am interrupted while I am doing something, I get irritable because I can only concentrate on one thing at a time.

Oh, and the Lyme rage is bad. My brain physically feels like 3/4 of it has been locked up where I cannot access it like before. The rest has a lot of clouds floating around. A new section has been opened up that contains the rage and the OCD. And the part that contains my ability to spell has not been touched, but it's the only thing that has remained the same. (I may have typos, but not real spelling errors.)

A couple of years ago, I started avoiding people. I quit emailing friends and quit talking to people over the phone. I only talk to a few family members and that's it. I used to be a very social person with a lot of friends. Now, it exhausts me to be around people and I get confused easily.

Every time I buy something at a store, I do something dumb because I am trying to do everything that I need to do to pay, take my stuff and get out of the way. Every time I check out (and these are multiple stores, not just one, so the people checking me out are always different) the checker has to say "Well, it's a Monday!" or "Well, It's Friday!" or "Well, it's morning!" Trying to make me feel better for whatever stupid thing I did. It never fails.

And I can't converse well anymore. Because I forget words, I can't take part in conversation. At home, my family is used to it so when I need a word, they try to insert what I need. But I can't do that with others - how humiliating. When I write, I can take my time and look things up, etc. But this is also why I quit writing to people. It took too long. Between the writing and the physical symptoms of reduced functioning in my hands (neuro), arthritis, fatigue, being able to sit for awhile, OCD...with the limited amount of time I have each day where I can accomplish things, I need to plan carefully and this just takes so long.

But it is very lonely. I try to get out to lymenet and other places, but there are so many. I had some lyme friends on one of the boards, but had to leave when I had to start working on my disability appeal. I no longer had time (I was a lead on that board and had to give it up).

So aquarelle, I totally relate. My limited energy goes to things that have to get done. I also have only a few people in my life now and it's very scary and depressing.