I've been worse lately since I've started my new abx and my mom says her medicine must be working too, because she hasn't been feeling very well. She's in her 80's and dosen't have lyme.

"Friends" want to know if I taking supplements, or anti-inflamitories, or this or that. They think one dose of antibiotic and I should be cured.

I wish I'd just kept my mouth shut. I'd rather they just think I'm fat and lazy!

Thanks for letting me vent!

------------------
KayKay
 

Until more is know about it, I think I'm just gonna keep it to myself. It's too stressful trying to educate everyone.

Not that I didn't try to educate, but I tried to pick a good time and a person with an open mind. Most people's minds are closed to everything.

------------------
oops!
Lymetutu

 

I hear your frustration. I'm more tolerant of the inconsiderte and ignorant "friends" as I'm getting better. Less lyme rage too. Probably a connection.

Many question askers are trying to figure it out, in my experiance. Many are amazed that long term abx is used for other conditions and no one thinks twice about it.

A not friend had me in tears for long term use of abx, after all HER lyme, Bell's palsy, was cured after 3 weeks of abx. Well almost 2 years later I'm much better and she is very arthritic, has carpel tunnel and other symptoms. I'm waiting for her to get really sick before I tell her she still has lyme. Maybe she will listen.

My dog re-lapses if off abx more than a couple of weeks.

Mel
 

He tells them "I'm sick on the inside, not on the outside !"

Haven't they noticed the 15 pounds he's lost ?
 

What a miracle diet.

My muscles have wasted away because I cant excersise them,, when I do Im in a lot of pain.

But I look nice and thin and healthy.

Remember its not how you feel its how you look!!!!!

Ahhhh damn materialistic society
 

I wish people wouldn't always go on about how we'll be more tolerant when we get better. I am already too tolerant! As Thoreau said, 'If I repent of anything, it is likely to be my good behavior.'

The fact is we're sick as dogs, and people have a choice, they can try to understand that or not. Most don't try, and what they need isn't tolerance, in my opinion, but a good kick in the butt.

No doubt someone will attribute my comments to Lyme rage. Whatever happened to good old-fashioned OUTrage? You don't get an epidemic like this kept under the rug and trivialized without the help of ordinary people.

I tend to think Lymies are often too meek. We stifle our anger, we internalize other people's doubts about the reality of our illness instead of challenging them, some of us get so damn beaten down and shell-shocked we can't even summon the courage to ask the high-priced LLMDs we see for things we know perfectly well we need.

Any group that's marginalized like us will have debates about whether the problem is that they're too cranky and strident. I would think we might have learned something from AIDS, though.

It's good to spare yourself from aggravation. I would focus on that, rather than sparing the feelings of those who are too dense to know they're stomping on yours.

I can't afford to STAY angry, with this disease, because my body and nervous system aren't strong enough. That doesn't mean I can't GET angry, I can and do and sometimes that is a very good thing. It's what I do about it that matters.

If someone's really clueless about herxing, I might ask them if they've ever heard of nerve gas. (If the answer is no, walk away). Because nerve toxins are what we're dealing with, when we talk about herxing.

Sometimes it helps to appeal to their vanity. 'Oh, I'm sorry, I don't know why I thought you'd be better informed about this...'

The reality of my illness is not up for a vote. But the treatment of Lyme by our healthcare system IS, in a very real sense, up for a vote, subject to public perceptions, as the Maryland Lyme bill reminds us.

So I try not to get aggravated, because I don't have anything personal at stake in what some drooler thinks. I'm sick as hell and I know it.

But at the same time I try not to let gross ignorance go unanswered, because if I do I am only helping to perpetuate the problem.
 

They are asking us what THEY can do, not telling us what WE can do.

It may be because my wife is a retired nurse, but they seldom ask her about other medical problems.

We have referred several to an LLMD as their concerns seemed quite justified, and one I think is a certain Lyme and coinfection diagnosis.

It can work both ways.