The first time they diagnosed me with LD I cried like a freakin' baby as soon as I left the doctors office. That was over two years ago.

When I found out two months ago that I've relapsed I just dealt with it. I've done what the doctor has told me to do and not freaked out about any of it.

Until I talked to my brother last night . . .

He started yelling at me that the doctor has no idea what he's talking about and I need to be listening to the people who love me not "some guy" who wants my money.

Who is he to tell me that I'm sick? I'm pefectly healthy!

(Mind you this is ALL my brothers perspective, not mine!)

I need to be working (which I am) AND going back to school this fall (which was postponed until next fall)!

I need to be out exercising every day because if I were doing that I would be healthy! That's my real problem, not some stupid disease!

He (my brother)knows plenty of people who have gotten bitten by ticks, and they were all fine! So, I would be too, if I just started exercising and taking care of myself!

Of course I don't have the energy to exercise, I have to start doing it to build up the energy to do it!

After this conversation was when I lost it. I started crying like a baby again.

I started thinking back on when I first was diagnosed. They told me "One month of doxy and you'll be all better".

One month later they told me "We haven't kicked it yet, and you have a coinfection too, but we're giving you a picc line, but two months of IV antibiotics and you'll be all better".

Two months later they told me "We still haven't kicked it, so we have to keep the picc line in for a while longer."

Six months after that they told me you have Chronic Lyme and Fibromyalgia, but you're in remission from the Lyme so you should be ok unless you relapse, which you probably won't.

Now I've relapsed.

First they tell me,after a clinical diagnosis, "You're relapsing, Three months of abx and you should be all better".

Then they get my test results back and tell me, "Probably 2 years of treatment, probably IV".

OK . . . . ALL THESE TIMES OF THIS IS WHEN YOU'RE GOING TO BE BETTER . . . WHEN AM I GOING TO BE BETTER?!

I've stopped crying now, but I'm still losing it. I don't know how much longer I can take this!

I don't even understand how I got bit by a tick! I HATE GOING OUTSIDE!!! LMAO! I'm the kind of person who likes to sit inside and read a book all day!

People just think we have to get up and do things to get better. They don't get it. I was disscussing with someone just yesterday how much I hate it when someone tells me I look good.....

because I Don't Feel Good!!! But they don't understand cause they can't see it.

I'm sorry your losing it, but don't, we need you.......

Thanks for ranting!!
Take Care
Abbie

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You can only see the stars when its the darkest.................

Sounds like you have taken a long ride on the old TRAIN OF IDIOTS.

I am sorry too that someone so close to you doesn't have a clue what they are talking about. That makes the journey so much worse for folks.

People have been trained to think Lyme is ONLY what Dr. BUTTHEAD originally said it was...

A tick bite... a rash.. and MAYBE a swollen knee.

NO BIG DEAL!

My guess is that your brother wouldn't talk that way if you had cancer.

Or a broken neck.

Those words bring up a completely different picture in someones mind.

Imagine what they would think if Lyme was originally said to be ...

A disease that is responsible for MS, Lou Gehrigs disease, Parkinsons, Altzheimers, heart block, fibromyalgia, chronic fatigue, and severe arthritis... and can cause blindness, mental disabilities, and if untreated... loss of life.

May I suggest?

Tell your brother, nicely, that you are willing to listen to a "plan" HE developes for your health care that takes into account your diseases and symptoms.

Ask HIM to figure out what HE thinks is best for you after HE researches it.

Then give him these papers from Cheryl's site....

They list DOCUMENTED symptoms from medical literature.. and show the cyst forms and have pictures.

They show info about treatment failures too...

Once he reviews this literature... I think he MAY just change his tune.

AND.. you won't have to try to TELL him all about what CAN happen... or argue with him.

OOPS! I gotta finish this before I can get the link... will come back with it for you.

I have been thinking about writing a post about this topic...

Lyme is not just a disease.. it is a life style.

Think about that for a while... and maybe I will post about it soon. If I do... know that I will be thinking about you.

Have you seen the movie... "Quigley Down Under"?

If not.. try to get it and watch it. If you have... watch it again.

OK?

And for you... the word of the day is ...

"Cucumbers"

I hear tell if you slice one and put the slices over your eyes.. it reduces the swelling so folks don't know you were crying.

I say this because....

I know when you pick yourself up out of this pit... you are gonna be rather "bulldog like"... and you don't want no sissy swollen eyes getting in your way when you start biting back.

What do you mean "These papers from Cheryl's site"???

I am still trying to win my endless losing battle you know.....

I really appreciate your support.

It probably would help my brother to do some research, but . . . I've been sick for over two years and no one in my family has bothered to try to learn anything about it yet . . .

I will definitely suggest it to him, though.

I've never seen "Quigley Down Under". I'll have to rent it. What's it about?

Cave - I think I'd have to kill my husband if he fell asleep at a support meeting! LMAO!

I forgot to post the link.

SandyL...

I THINK you are the one I wrote a letter for?

If so... I enclosed ALL of the info from Cheryl's site in with my letter to them... like 100 pages or so?

I really look too normal, even some Lyme folks I've met have looked at me sideways. Plus I am a ragin' ball of round fur, even from my bed - so I am not the sick-looking type, even on a terrible day!

Although some may be more honest by blatantly sharing their denial, it's nice when they at least *try* to be understanding. And just terrrribibble otherwise.

Too many ppl ditched me when I was most sick, now I am so much better and they are history. I am tougher with a severly truncated 'friend-list', more cautious of people in general, if not still quite friendly with lots more time for myself and helping others.

Brothers (and other family) will always be family though. And likely we still love them, even through it all.

Anyhow, I am up late and have a couple of the links mentioned in this thread:

The most excellent Cheryl files and site: http://www.lymeinfo.net/lymefiles.html

The amazing Tom Grier essays: http://www.wildernetwork.org/TomGrier.html

Hope you're all feeling better asap. My most healing wishes go out to you all.
Z

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