What you're saying is exactly the most frustrating thing to deal with in LD.

That is, when am I going to turn the corner? When am I going to see some good days?

When am I going to see my worse symptom disappear?

If I just could get rid of this one symptom or that other symptom, then I could function & feel good.

Or, you just want to scream, "Nothing's working. I'm still sick."

Or, others are seeing impmrovement, why can't I.

Green Darkness covered the depression part of the disease well, but I want to talk about the physical side.

You're feeling surreal because you finally got a diagnosis. Changes everything doesn't it?

That ends pretty quickly when you add the antibiotics.

But when you add toxins of the dying bacteria to the mix you feel worse.

You feel like you have the flu or a truck hit you.

Other "well" people cannot really understand how bad you really feel if they've never had LD.

That makes you feel isolated.

These antibiotics add to your fatigue.

Then you think-----well, is this depression or do I just feel ill?

The internal dialogue can eat you alive.

I'm not saying to ignore how bad you feel.

It's good you came to us because you need someone to talk with. We do know it's rotten & it's all crazy-making.

I've only been on treatment about l6 months after no treatment for 13 years.

The first 16 months has gotten me out of daily pain. That's a huge miracle for me.

Now, I'm hoping my energy levels will start to return; memory will improve; & sleep will make me feel human & respectable again.

My treatment so far is a drop in the bucket considering how long the Bb has been hiding out.

So I don't know exactly how long a person needs to stay on one antibiotic to give it a chance, before trying another.

Initial treatment simply tries to reduce your bacterial load. That's a huge job for the ABX to do if you've been sick for a long while.

I suppose I had been on Zithromax for about 3 months & called my LLMD.

I told him I still wasn't sleeping & couldn't I get an ABX to go to the brain.

He suggested 6 months of Rocephin injections. I thought, "oh wow, this is my chance to get rid of the insomnia."

I guess I simply had unrealistic expectations.

This didn't happen. I still have insomnia & have felt quite guilty for not being able to fall asleep for years.

Most folks that know me personally would like to hit me over the head with a baseball bat so I will shut up about my insomnia.

But when I come on the board I see that I'm not alone & I don't feel so guilty.

I've stopped beating myself up for this.

I've really walked around in a lot of shame because of the insomnia thing.

I don't do that know.

My North Texas Support Group leader just sent me an article about what to expect when you start Lyme treatment.

I can't say that if I'd had the article last year that I'd feel happy about not making progress.

But even now, when I read the part about the mind--------it's reassurring to know that most get their minds back last.

Thinking back, my LLMD did tell me the sleep would return last.

That's good to know because frankly, I just thought I had been sick too long to get completely well (13+ years).

I wish I had more comforting words to say.

This won't make you feel any better, but my LLMD said that patients have to get sicker before they feel better.

(I know you already know that----sorry!)

He later said getting well with Lyme is sort of like this: Pretty soon you start to have maybe a good day. Then time passses, and you have a few more good days.

He said you don't just wake up one mornig & are well; it usually happens slowly, gradually.

Pretty soon the good days outweigh the bad ones.

You've got to be gentle with yourself & realize you have a serious physical illness.

Don't exhaust yourself physically trying to keep everything going perfectly.

At home, use paper plates & paper cups, if you have to. We're all forced to make allowances.

You'll probably end up having to let many, many things go undone that normally you would never do.

Your infection may even be invisible to others-----and believe me that's the worse kind of stress.

They think-----well, you don't look sick!

I'm amazed & admire you because you're able to work during treatment.

That in itself, is adding more stress that you can't avoid.

I can't work so I have the luxury of staying home during treatment.

How ya'll make it through while working is beyond me.

Give yourself lots of credit.

Enlist your teenagers' help at home.

Whatever they can do for themselves---- they should be doing it.

Tell them you need extra help for maybe 6 months to a year.

(Many LLMDs think it takes 18 months minimum to get well.)

You've got to make it clear to your teens that this is not just for a month or so------so they'll know what to realistically expect.

I'd like to send you that article I just received this week.

The only reason I haven't posted the site as a new topic for Lymenet is because it has no author.

(I didn't know if it would be proper---I have no idea who wrote it)

The article did help me.

Others will come along & give better advice than me.

Just remember you're physically sick. You don't have to apologize for feeling down or frustrated.

Here's the article. I'm not endorsing anything medically it says------that's strictly between you & your LLMD.

It kind of looks like a new patient guide to Lyme treatment. Encouragement Reading!!

http://www.angelfire.com/me2/StarShar/Herx1.html

Hope this helps a little.

By all means, if you want an antidressant ask your LLMD. Maybe you need a Rx one or maybe a natural one like SAME-E.

SAME-E is good, too because it detoxifies the liver-----which in some folks can clear the mind.

Just remember like antibiotics, the antidepressants act differently in every individiual.

Let us know how you do.

Oh & call your LLMD just to let her know. She might not change your ABX immediately. But maybe the next time you see her, she might consider it-----who knows?

Take Care,
Jan

[This message has been edited by RECIPEGIRL (edited 03 September 2004).]