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» LymeNet Flash » Questions and Discussion » Medical Questions » Anyone have strange reaction from friends when you shared dx info?

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Author Topic: Anyone have strange reaction from friends when you shared dx info?
Peedie
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Strange reaction from friends. You know how exhausting it is... to go through the Lyme story with everyone close to you.

So I didn't, but had to finally, because I've been MIA from socializing, and I had been telling friends and family I wasn't "feeling well".

So then I wrote up a little explanation of Lyme disease and let them know I was diagnosed.

I hoped this would explain why I don't play tennis anymore, ride horses anymore, hike anymore and sometimes leave parties a little early.

Thing is...no one has talked to me since. Maybe I should have mentioned it is not contagious?


Has anyone else gone through this? What did you do?

Peedie

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cantgiveupyet
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sadly a lot of us have gone thru this.

Lyme will let you know who your true friends are.

I had coworker friends who seemed to avoid me...looking back I think they just felt bad that they couldnt help and I was suffering.

Some people dont like being around sick people.

You will also come across some that will feel its no big deal and you should be out socializing with them.

Most of my friends have lyme and ive met them on here or other sites.

Hang in there, sometimes those you never thought would offer you support are the ones that end up being supportive.

--------------------
"Say it straight simple and with a smile."

"Thus the task is, not so much to see what no one has seen yet,
But to think what nobody has thought yet, About what everybody sees."

-Schopenhauer

pos babs, bart, igenex WB igm/igg

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BugBit
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Having been ill for DECADES, the usual response I get is:

You look ok
It's in your head
quit faking and get a job
But you look ok
You don't have Cancer so you can't be sick
Everyone knows Lyme doesn't exist
Lyme is just another word for depression/aging
What's Lyme?
Isn't hat spread by a tick or something?
But you LOOK OK
I don't understand what you mean when you say "I crash after I exert myself"
What is "crash"
You are just lazy
But you LOOK OK

My entire family is infected and they are the worst about the being lazy and it's in your imagination thing

really sad... and often lonely to not be able to share ten years of research on the topic with anyone

I feel your pain.
Sincerely,
*BugBit*

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Nessa1815
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Well, my family have been very supportive. My brother who is skizophrenic, he can't help it, before he actually knew what was wrong with me, he kept calling me a hypochondriac and to just "look at the bright side of things". I would just cry and cry telling him that whatever that was wrong with me was REAL.

Now my mom in the beginning, before the dx, kept saying it was probably anxiety. My hands and forearms would go to sleep, my neck hurt so bad, I was an emotional wreck (not usually like that), she said I was just having panic or anxiety.

I was like, "NO!!!!!!"

Finally, after I got my positive result, everyone seemed more empathetic.

However, just yesterday, my husband looked at me and said, "How ya feeling?"

I mean, how am I supposed to answer that without being a freaking downer and a negative force? Do I lie and say "GREAT" or do I tell the truth?

Well, I told the truth, and he seemed irritated with me. He said, "Well, look good! You don't look that sick today".

That is insulting, jump into this body and feel it. He gets a back ache or his allergies act up, and I never hear the end of it. If he only knew....

I cry too much and that irritates men I think, I think after a while, people don't know what to do with you, I wasn't like this before the bite, so it must be something with my brain.

I DO feel depressed now, for the first time ever, and then I got rxd a different new kind of anti-depressants and then he had to comment on "why the heck you taking those, you aren't depressed."

Ummm...yeah, for the first time, I am. He said, "Well you don't "LOOK" depressed."

Maybe I should head to Hot Topic and buy some goth gear (OHHHH I miss dressing like that! But I'm a mommy now, can't do it! hhaha) and walk around the house with a complete doom and gloom face!

It's only a matter of time where people's sympathy/empathy wears thin. That's what I think. It's sad.

Edited to say: My extended family, like my favorite aunt of all time and my papa who is like a dad to me, they find this dx hard to believe. It is hard to believe but they STILL don't get it. My aunt wants to do her own research and my grandpa insists that I got to the Emergency Room and they will fix it. (He's 80 [Smile] )

They both think that this is too unbelievable to be true, the fact that we have to pay hundreds/thousands for LLMDs that our insurances usually won't cover. It just doesn't make sense to them.

--------------------
"~*~My smile hides my bite~*~."

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Vermont_Lymie
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It's the weirdest thing. People are VERY uncomfortable with a lyme diagnosis, even folks you might have known for years.

Some of my closest have not even looked into it, nor ask how recovery is going. For some folks, there seems to be a stigma and sense of shame to lyme diagnosis that make them discount our experiences and shun mention of it.

Recently I have taken to giving the folks who count in my life copies of Pam Weintraub's great new book Cure Unknown. Pam did a great service in explaining the disease, the surrounding misconceptions, and whole weird world of lyme better than I can!

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randibear
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i have learned not to mention it at all. they don't understand it and don't really care.

it's not like a broken bone where you wear a cast. they say "well you look ok, you should be feeling fine."

it's not being closed minded, it's just that they can't SEE anything wrong so if they can't see it, it doesn't exist -- kind of like the doctors...

sad, really

--------------------
do not look back when the only course is forward

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tic chick
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Well, that is why I have the problem with my balance and vertigo... so bad that people CAN see. If I didn't have this sx then no one would even take a second look.

Pamela Weintraub's book, I purchased off Ebay and gave to my mother has made a tremendous difference. If they love you, they will read it.

Edited to add: Pass this out..... http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

Adversity is the diamond dust heaven polishes it's jewels with. - Robert Leighton

--------------------
Adversity is the diamond dust heaven polishes it's jewels with. Robert Leighton

Daily world-wide prayers welcome for the Lyme Community - every day at 6:00 p.m. Pacific Time and 9:00 p.m. Eastern Time all faiths welcome!

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easypearls
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i've only recently found out that what i've been suffering from for the past decade-plus is lyme


disease; however, prior to my lyme dx, i was dx'd with fibromyalgia and chronic fatigue syndrome


(i'm sure many of you have had the pleasure of the same dx's.). my extended family is very


supportive. autoimmune disease runs in our family, so they're familiar with the whole looking well


but feeling awful phenomenon. my immediate family is so-so. i think they're skeptical of the lyme dx


because, to them, it's just another dx in a long line of supposedly accurate dx's. one of my


sisters is wonderful -- she's thrilled that i've finally found out what's been plaguing me for so


long. my dad doesn't say much. my mom wants to fix everything, which is supremely annoying, but she


means well. my friends and coworkers are supportive because most are no stranger to chronic


illness or lyme disease. i live on long island in new york, so just about everyone i know has either


been bitten by a tic at some point or knows someone who has been infected with lyme disease.


the most frequent response i've gotten is "oh, wow, i didn't know lyme disease could be chronic."


and it hasn't been said [yet] in an i-don't-believe-you tone. it's more that they are


genuinely surprised and want to know more. again, this is just the beginning for me, so who knows


how the rest of my world will react once i've been in treatment for a while. but i'm crossing my


fingers and hoping for the best, though preparing for the worst.

--------------------
Currently under the care of an LLDC for the homeopathic treatment of Borrelia, Babesia, Bartonella, & Ehrlichia.

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Angelica
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I find the strange reactions from friends painful at times and isolating.

One of my friends for some strange reason thinks that Lyme disease is an easy fix and wonders what is taking me so long to get better.

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hcconn22
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Tell people you are on chemotherapy. Then you will see them change... chemo is a multiple drug therapy as most are on for Lyme.

We have also lost all friends and most family. At this point we dont care. We just want our health back.

After 6 months of treatment I am getting better.

--------------------
Positive 10 bands WB IGG & IGM
+ Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest

And still positive ELISA and WB two years after IV treatment
http://www.lymefriends.org/profile/blake

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Peedie
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Well I'm done "sharing" news about me - or my daughter who is also with Lyme.

If I ever hear from them I think I'll keep the answer short - "Better today", "I have good days and bad days" or "I'm hanging in there" like ranibear.

I will however, educate people who I think need to consider Lyme as the source of their illness. Though I should be careful not to push too hard?

Tic Chic - I remember "The Spoon Theory". When my daughter was dx with Lupus about six years ago.

I sent it out to family and friends and it was well received. She was really suffering then and could barely function.

But - sadly everyone soon "forgot".

Can you or Vermont Lymie explain the title of the book "Cure Unknown"?

The title scares me. When I went shopping for a book, I selected "Beating Lyme" LOL It's also a good book.

TC -peedie

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Lauralyme
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There is definetly stigma attached to the word DISEASE

People seem to be really hung up on the blood test
(Igenex is not recognized in Canada)and don't buy into the clinical diagnosis. I suppose that's what gets the ball rolling down the path of disbelief.

I wonder if these skeptical friends would behave differently if I had told them I had cancer.

Most people just don't get it.

--------------------
Fall down seven times, get up eight
~Japanese proverb

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METALLlC BLUE
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I really don't care whether people support me or not. I've always been the strong silent type when necessary. I'm a man, it's what I do best. If someone gives me a hard time, I just overpower them with the facts, providing ample evidence to the contrary, whether it's "You should see a psychiatrist, you don't look sick, but you've got your arms and legs, so it could be worse." to "Think positive, mind over matter. You can self heal if you meditate more, if you turn this over to God, if you stop trying to tell the doctors what to do, and how to do their jobs. You could get better if you really wanted to."

I hear "all" of these things, and usually I say "If I wanted your opinion I would have given it to you, so who the **** do you think you are telling me how it is, or how it should be?"

I tell them: If it helps you to feel better to think of my situation like that, then you go ahead and do that. Your lack of understanding, lack of empathy and lack of courage to cope with even learning about my situation or to trust that I'm making the right decisions disgust me, but hey -- it helps "me" to think of your situation like that.

Most people shuffle away with their tail between their legs, only to apologize later. Then I tell them "S'ok, it's not your fault your an ignorant stupid ****in' inbred tractor driving hick with the mental capacity of a rats cancerous ballsack.

Then they usually start laughing, and forget that their transgression ever took place. But I......never forget it. What goes around always comes around, whether you acted in ignorance or not. I forgive, but rarely do I ever trust that person or respect that person, again.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

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Wimenin
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Wow, this topic really hits home with me.

As Ive learned like the rest of you, your true family/friends will support you know matter what. The rest, they really dont care, and they really dont want to know about it. To the non believers, they simply feel you're mentally unstable, physically challenged, a train wreck, a whiner, etc, and theyre too concerned about their own little world to really care.

My family has been great and its been an educational thing, which has led to having other family members diagnosed. Even some close friends have suddenly been more interested.

Ive explained this plenty of times to the boss, but basically, all they probably really care about it, will the work get done.

I also have found out that many of the people will still, still after all Ive gone through, believe that you simply see a rash, take some abx for a few days, and you're all better, so dont worry about ticks. Boy, are they in for a surprise when and if they get bit by the wrong little bugger...

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Peedie
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Early on I quickly realized - no one knows a thing about lyme disease.

However, surprisingly(I say because I didn't know), they know spirochete - but know it as a STD !!!!!

I could see the fear on my co-worker's faces as they step back from me - like oh... contagious! LOL

I will never use the "S" word again!!! From now on it's dumbed down to simply "bacteria" or "infection". I'm going to avoid "disease" also.

Really, I've decided less is better. This is a complicated disease. We can't educate friends to a lever of understanding in one conversation anyway.

It would simply take too long and it's too difficult with "Lyme" brain going on! Know what I mean?

Although conversations have been interesting lately. With friends "participating" in my sentences. LOL

Kinda like filling in the blanks - "what is the word I'm searching for.." It must be exhausting for them talking for the both of us! LOL

I'm so glad we are talking about this - it really helps - I'm was feeling the loss. [Frown]

Peedie

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Lauralyme
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Peedie,
You really stated it well. Don't say "disease" and keep it really simple. Besides it is draining to repeatedly explain the controversy.

--------------------
Fall down seven times, get up eight
~Japanese proverb

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Junegal
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I've just this week realized that I need to stop telling people what is wrong with me.

No one believes it, no one cares. If someone calls and asks where I was or what I did and I say "I was at the doctor" (where else have I been for the past 1.5 years?) I get "gotta go now" and they get off the phone.

When dx with CFS, I was told...

"You know that's not real, right?"

"You are just depressed, try some light therapy"

"The problem is you don't think positive, if you would just think positive you wouldn't be sick"

Now with Lyme I get the same crap.

I got a positive Spect of my brain, and it was like "See, I REALLLY am sick, really"

Still people don't want to hear it.

I think I need to stop talking about it to people. No one gives a rat's arse.

I keep thinking in my head when they act like this "You need to get down on your hands and knees and pray to God this never happens to you." I think the only way for someone to understand this is unfortunately for them to GET this "disease."

Like Bugbit said, I hear over and over "you don't look sick" "wow, you look great today, you must be better." Yea, okay, whatever..

Love Metallic Blue's response to the ignorant ones. I've copied it down now need to memorize it.

I am so sick of being sick and being so isolated..

--------------------
Junegal

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Vermont_Lymie
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There's an old post somewhere from Bejoy with good advice on what to tell people.

If I must, I tell people on a need to know basis, that I have an antibiotic-resistant systemic infection. Or, if neuroborreliosis. That usually does it! [Smile]

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Peck
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After years of things going crazy in my body I finally found a great Lyme Doctor. That was a year ago.

What I get now is "are you sure your doctor knows what he's doing"?

aaaaaaaaahhhhhhhhhhhhhh

--------------------
simplify....

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lymielauren28
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I come from a divorced family. My mother has been really supportive. She watched her strong, assertive, social, bubbly, hard working daughter deteriorate into an almost non-functional, sickly hermit in less than a year.

For the first year and a half I had no diagnosis and had been tested for everything under the sun.
It KILLED her to KNOW that something was making me horribly sick but not know what it was.

When I did get the Lyme diagnosis she cried (tears of joy). Then she read and studied everything imaginable on Lyme. A few days later I saw her and she said, "You know, you picked a good one Lauren - this stuff is gonna be hard to beat - but we're gonna beat it!"

That one word "we're"...after losing everyone else...friends, family...to know that I wasn't completely alone in all this...I've tried to explain to her what it means to me, to have her support...

My Dad, stepmom, and siblings however...that's a whole different thing. My Dad actually told me that maybe subconsciously this was my way of getting attention. Exact words.

He then went on to say, "You don't need to talk about the whole Lyme thing with your stepmom, because she's got some serious reservations that that's what's wrong with you."

Then he told me if I'd pray about it that it would probably all go away. PRAY ABOUT IT?!?!
Are you kidding me?!

Like that never crossed my mind - praying. Sorry I didn't make a public service announcement everytime I was on my hands and knees crying, BEGGING for God to take this away from me.

I have little to nothing to do with either one of them now. I struggle a lot with feeling bitter over all of this. I try to focus on the fact that while I may have lost most of my family and friends, that I do have my Mom and my Fiance, and that's two more people than some have.

But it's hard. Bejoy wrote a post over in General a couple of months back and it's absolutely beautiful. I've read it numerous times.

She speaks about feeling better, but being so angry about going through what she went through - the loss of so much, and not feeling like she could relate to anyone anymore. She said she felt like a soldier back from war, unable to tell family and friends the atrocities she experienced on the battlefield.

I am feeling much better physically, but emotionally? I don't know that I'll ever be the social butterfly again...I don't know if I'll ever get over the feeling of being abandoned by the people I thought loved me most. I think I'm too young to go through life angry and bitter, but right now these are the feelings I feel, and I just have to feel them.

Right now at this point in my "Lyme life", I am better, but Lyme has left me a little jaded, a little unsure of my place in the world...

Lauren

--------------------
"The only way out is through"

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Lauralyme
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Lauren your Mom is amazing!
Sorry to hear about your Dad and step mom.

Although not quite as severe a situation as yours I really identified with how you feel...being abandoned by the ones you thought loved you the most. Its appaling really as I've experienced it with my brother who has been incredibly insensitive.

Like you I don't know if I can ever get over and forget his behavior....on this one and I was never one to hold a grudge. This is just too major.

--------------------
Fall down seven times, get up eight
~Japanese proverb

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IMHisda
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I know how you feel. I think some friends have talked to their non- LLMD's about me and decided I'm looney, just have chronic fatigue or something but don't want me talking about it that's for sure. My hubbie and support group and church have been great and my sis with Lupus and my other sisters have been supportive, some of my brothers [Smile] .

--------------------
RV

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METALLlC BLUE
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Me and my girlfriend are starting to work on a project together that Dr. H in NY recommended. The book is called "The Journey" -- in the book, there is a process which Dr. H called "Phenomenal" --- he said it's like a miracle how fast it works and how good it is for people who are struggling and suffering with trauma and issues from the past.

He said "Everyone has issues, we're all the "walking wounded" -- but this book is very helpful to me and my wife, and we practice it on and off as needed. We get a lot out of it.

The book has some tools -- which I haven't quite gotten to since I'm reading the book right now, and those tools are all about facing the feelings all of us have right now about family, friends and people we feel abandoned by, betrayed by, angry with -- enraged with.

The book helps us "heal" our bodies, by getting to the root cause of some of our emotional issues. The body stores emotional trauma, not just in the mind, but the body as well -- and illness can result, whether mental or physicial.

With patients with Lyme Disease, our emotional health has a big impact on our physicial healing. If we're holding onto so much anger and resentment, it's only going to slow us down.

Now, I'll admit, I'm a little gruff and a bit feisty towards people, but if Dr. H says this helps, then maybe it can help me. It's interesting that many of the memories or traumas we have, we don't even known we have them. Some of the big obvious ones are easy to see, but the smaller ones (In our minds) can actually have huge impacts.

So I'm going to try this exercise "Journey work" and see if it'll help me to let go of something.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

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tailz
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My next-door neighbor approached me 2 years ago, wanting to know why I had lost a significant amount of weight and muscle mass - she said I was thin when I moved in, but wow - was I anorexic? It was soon after that I found out I had Lyme, and we actually had gotten to be close over the next 2 years.

But I guess even this relationship wasn't immune, because she recently reported to me that her sister looked Lyme up on the internet, and apparently she read that a couple of weeks of antibiotics cured it - so evidently, what was coming out of my mouth about Lyme did not have much credibility with her. And why even mention my positive babs?

I don't even know why I bothered to accept her friendship to begin with. She's had me out there planting shrubs for her the last 2 summers (because I'm home and she works), and when I declined to help her plant recently because I was stressed enough over my own yard, she sent her ex-husband out there to dig for her instead.

The thing is - her ex-husband had just been released from the hospital - heart failure and pneumonia. What's more - he ended up going to the hospital shortly after she had him out there scrubbing mildew off her shed (in 95 degrees), just so that she could paint it.

Then when he was released from the hospital - maybe a week later, if that - I watched him try to dig some holes for her the one morning. He was huffing and puffing, so I went over and dug them for him when he went in to rest - thinking to myself - if I get these planted, she'll stop bothering the both of us.

So what does she do next? - Sends him out there a second time to dig some more holes for her, but this time, I didn't get involved because she was out there with him. I heard a crash though, turned around, and he must have gotten dizzy and ended up crashing head-first into her skirting, knocking it off the house.

Then when I went over to see if everything was okay, she acted like he had been begging her to dig holes for her - I know him - trust me, he wasn't begging.

Then one day I was sitting here griping about how there were so many things I wanted to be doing, but how I didn't have the money to do these things, and no health, and after bumming a few cigarettes off of me (again), she admonished me for buying cigarettes and plants.

So basically planting things in her yard is supposed to satisfy my hunger for creativity and a life, and I sure do come in handy when she runs out of cigarettes, don't I? - but forget my own yard and smoking habit. And what exactly would be left of my life, and what would I have to look forward to if I were to give both of these up?

People are just weird lately - just weird. I think if I want a friend next time, I will find one with a tail, rather than settling for a slave driver.

Also, when I even mention Lyme now she treats it equally as unimportant as when I mention EMFs/RFs - saying nothing at all in response or even changing the subject, like I'm mentally deranged and that what is coming out of my mouth is not even worthy of a response.

"You need to get a job so that you feel like a productive member of the society." (Says who?)

"You need to get out more."

"I think you think about Lyme too much."

"But you look fine."

"How can you plant shrubs and not be able to ___?"

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Larkspur
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I too have been hurt terribly by some "friends" reactions to my illness, which for me, is primarily more absence/disappearing, or appearing completely uninterested.

Esp when I first got sick 5 years ago my coworkers were horrid!

But my parents and husband have been there for me 24/7 always - I am very very blessed.

I have a couple very close friends who are on board too although it took a little work for them to understand how I've changed and what my needs are etc

I have had to learn how to communicate better.

It struck me the other day that no one who doesn't have direct experience can really understand what living with this illness is like and you can't force them to.

I believe if you let them go (when you are ready) then you open up space for more caring understanding nuturing people to come into your life.

I also believe in feeling what you are feeling though - if you need to hate, rant, rave, and cry about the hurt it is important to do so.

--------------------
"We must be willing to get rid of
the life we've planned, so as to have the life that is waiting for us" - e.m. forster

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bystander
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Having people watch the Under Our Skin DVD has helped a lot.

What a gift after years of referring people to websites or handing them articles or trying to explain.

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AmyPW8
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Tailz,

That's my experience, too. I talk too much about it and I am going to kill myself because long term antibiotic use is dangerous... Anytime someone sees me limping I get, "How's those antibiotics working for you?" or "Not helping much are they?", as they make it a point to stare at my leg. [shake]

My close friends have gotten better because they can see I am better. But even they think my illness, my doc, and my treatment is a bunch of horse puckey. I just pray and keep to myself, because in the end the proof is in the pudding. (Where did this expression come from?) [confused]

In time, they will see.

Amy

--------------------
Amy

Diagnosed April 29, 2007.

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Keebler
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-

I'd say it's far more effective to give them a couple books and articles and then say how this affects you. This is one approach:

1. The Savely article (this helps explain the importance and urgency of treatment and also does an excellent job of describing the medical-policital turmoil between the IDSA and ILADS. This must be understood and Savely does a great job. But, this article does not detail co-infections. You need ILADS's guidelines & Singleton's book for that.)


2. The CT. Atty. Gen's actual and original press release (reitterates Savely's message)


3. Singleton's book "The Lyme Disease Solution"
- he is an ILADS member, a LLMD and one who understands that one simple pill will not be enough.


4. ILADS' DVD: The Nuts and Bolts of Lyme Disease. LEt them SEE the ILADS doctors' seminars.

5. Weint--'s (sp?) "Cure Unknown" shines a light on how hard it is to get treatment and what damage is done due to that.

6. Garth Nicholson also has an excellent article on what chronic neuroborreliosis can turn into, as does Alan MacDonald but I'm lost away from my home Mac. - sorry I can't give links.


THEN Ask them to please read / view these materials as you don't have the energy to convey all this to them, but you'll be glad to talk with them later.

I'm not at my home computer and don't have the links to the materials I suggest. But they are generally what I post everytime I see a new person here. You could search my name for posts in the last ten days. I know I've posted those recently.

AND the NEWBIE links have some great resources as does the LYMEBRARY.

As Elinor Roosevelt said that no one can make us feel inferior unless we give them permission, we have to really take that in with this.

They are the ones dropping their end of the friendship or family pact by not learning from the researchers about this. But, realize, too, that it may just be too much to take in. They may be very scared for you.

If this were any other condition, I'm thinking it would be approached by sharing professional literature - and noting that not all experts agree and that the road is not certain.

We have to keep our heads up and know that we've not done anything wrong. We got deal this deck and it sure would be great to have some support and understand and they will learn so much so that if they ever need this they will be miles ahead.

And, as painful as it is, you have to let it go. I had to force myself NOT to talk about it if no one asked. I sent a book. No one read it. End of discussion.

Too bad, but sometimes, that's just the way it is.

But, somehow, we still have to find common ground with those we want to have in our lives - we don't want to be able to talk just about his, but as this zaps so much strength, that can be hard.

Hopefully, as more books come out, people will see what is happening.

Good luck.

-

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Angelica
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One friend told me they were told they had CFS and Candida but it turned out there were just allergic to house dust.

She keeps trying to act like maybe that is just my problem - dust bunnies.

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bejoy
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http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=064847#000000

I have Disseminated Lyme Disease from a tick bite that didn't get treated on time.

This is an antibiotic resistant infection of the brain (a form of meningitis), other organs of the body, and the joints.

Although I look fine, this disease causes me a great deal of pain throughout my body, overwhelming fatigue, and sometimes mental disorientation.

The late stage lyme bacteria is very good at evading the immune system and resisting antibiotics. Treatment may take a year or longer, and the drugs I have to take make me feel very sick.

We are going to be dealing with this for a long time. My family and I could use your understanding, support, and friendship while we get through this difficult period in our lives.

--------------------
bejoy!

"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson

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METALLlC BLUE
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Bejoy, that's simple and concise. Unfortunately people are generally stupid -- in my experience -- and can't even fathom such a simple concept. They immediately return with "But that's not what my doctor and my other friend say. He had Lyme and got treated with 2 weeks of antibiotics, and he felt better. Our doctor agrees that 2-4 weeks is all that is necessary. They told me that you don't really have Chronic Lyme, that maybe you're just not....really accepting the truth of your MS diagnosis. Chronic Lyme doesn't exist. I read the CDC website too"

My response:

"Well, good for you **** for brains. I appreciate your stupid ****in' euphemisms and your attempt to imply that I'm somehow inaccurate in my description of my circumstance, or that I'm all together falsifying the situation."

Them:

"Well, I didn't mean...."

"You didn't mean? No no, it's not that, it's that you didn't think. Perhaps if you stopped telling me your version of what my experience ought to be, then you'd be able to comprehend the most primitive concepts of what I've tried to express to you. There are two standards of care regarding the treatment of this disease. There are hundreds of studies indicating that persistent infection occurs in Lyme Disease, that the medical community can't agree over the most fundamental factors. Since I was bitten by a tick, and then....immediately fell ill, and then....saw a doctor who specializes in tick-born infections who coincidentally believes that Chronic Lyme Disease exists, I've decided to advance forward under the presumption that the studies of persistence are accurate and that those who claim the infection is cleared in 2-4 weeks are simply incorrect, especially given the fact that I've been on antibiotics for a few months and still don't feel well, but I'm "better" -- it seems the longer I go, the better I get. As in all scientific revolutions, someone has to be wrong -- but I'd much rather side on caution and get treatment."

"But, the doctor said your doctor is a quack and that you're just experiencing anti-inflammatory effects from the Tetracycline."

"Who are you going to trust, some stupid **** with some initials after his name, or your brother, best friend, son, boyfriend, girlfriend -- whatever you are who has first hand experience with the process? Not to mention, what kind of moron holds fast to an anti-inflammatory explanation for the progress made in a case of chronic infection. If anti inflammatories is all it took, I should have been in seventh heaven instead of Dante's hell when I took all that prednisone the last douche bag prescribed. When you've tried countless anti inflammatories, and none work, it seems a bit strange that suddenly an "antibiotic" could be accomplishing that goal. Let's not forget, drugs like Bactrim, Levaquin, Biaxen, Flagyl, Cipro -- do not all have anti-inflammatory properties, some do, some don't -- the ones that don't, also improved my health. What does your retard M.D. have to say about that snapper head?"

"Well...."

"You know what, don't bother answering that question. I'll answer for you since you're obviously too ****in' stupid to do it yourself.

"I'm dumb, I'm not a good listener, I'm a terribly friend, I really don't care about you, I like to make you feel bad for being sick, I get a hard-on telling you that another doctor says your illness is psycho somatic."

Sounds about right, eh? You know what? Don't call me, e-mail me, fax me, write me, or send me any form of communication, whether through another person, or web video -- etc. Let's just say, don't ****in' talk to me at all, mmmmm kay retard?"

"You're an *******."

"No, I just make poor choices in the people I allow in to my life, but I'm reconciling that right now. Now get the **** out before I beat your skull in with my bottle of Tetracycline

I like my way. It's more....realistic. [Embarrassed]

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

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lymielauren28
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Haha [lol] !!! Metallic - I know it's not funny - any of this - but me and a friend of mine have been laughing our a**** off at your last post!

Trust me, I feel your pain!

Lauren

--------------------
"The only way out is through"

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tailz
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Amy, I get admonished about taking antibiotics, too. I think what people fail to realize is that, as sick as I feel right now, I was even sicker 2 years ago and would have died without them. When they persist I try to remind them of that, point to my weight gain, with the attitude that I must be doing something right.

The neighbor I mentioned above though keeps trying to compare my illness to her heart attack - she keeps reminding me that they put a stent in and she was back to work after only 1 or 2 months, because she had no choice. I WISH they could go in and open up the blood flow to my brain.

Though she doesn't come right out and say it often, the undertones are there most days that this whole disease is some sort of a mind over matter thing that I am only fabricating for attention, or because I'm lazy, or because I'm lost, and even when I try to tell her that everything, even attitude, originates in the brain, she looks at me dumbfounded.

Recently I pulled out the SPECT scan of my brain, which I had planned to show her if we had ever gotten into a heated discussion again about things, but instead, I simply told her that I would prefer to keep to myself from now on, since it was obvious she didn't seem to understand, and punctuated this wish with, "I hope the trees grow really fast so that nobody knows I'm even in here."

Pretty sad, but I meant it.

I truly cannot deal with all the skepticism from people around me, along with this horrid disease. Even my daughter and I are not talking - and she did show some bands of Lyme herself.

I think the only people who truly understand Lyme are the people who have it. I will no longer try to get any sympathy or compassion or whatever it is I am seeking from a non-Lymie. I'm not even sure what it is that I'm seeking, but to talk about Lyme and have people change the subject or fail to respond - I'm not sure which is worse.

I already feel invisible to the medical establishment. Do I really need to feel invisible to my family and friends?

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METALLlC BLUE
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It's really not that painful. I mean I've had this for nearly 22 years -- A few weeks and it'll be 22. I'm 30 years old. You know? By now I've figured out how to handle people, even with my congitive deficits.

I focus on my strengths, hide my weaknesses, and I worry "only" about myself. When someone asks me how I'm feeling, I don't give a damn about what they're feeling. I'm encouraged to tell them the truth. If they don't like the truth, which many don't -- I tell em to **** off. The way I see it -- it's their fault for asking the question, if they don't like the result (answer)"

I've learned some very critical rules over the years.

1: In the end, you're alone.
2: 9 out 10 don't care
3: The 1 out 10, is to stupid to comprehend the concept
4: Medical textbooks are more useful than doctors visits.
5: 1 out of every 30 doctors, is actually living by his or her commitment to the Hippocratic Oath.
6: 29 out 30 doctors hope you'll be a no-show, so they can collect without seeing you.
7: When people can't figure out what's wrong with you, it "must" be a psychological problem.
8: Family as defined by nature is one which serves each of it's members in accomplishing the individuals goal of survival.
9: Illness is stressful, family will usually abandon the sick, just like most animals leave behind the ill, and or kill it.
10: Life isn't fair, things do not inherently have any meaning, less that which you give them.
11: Those that matter don't mind, those that mind, don't matter.
12: Your best friends can secretly manifest as your worst enemies. Keep your friends close, but keep enemies even closer.
13: Go into debt, money is meaningless if you're dead. Pay whatever it takes, sell whatever you own, give whatever you've got -- to regain health. Don't let "He doesn't take insurance" stop you from making the right choice.
14: Develop a thick skin. The world would prefer if you perished. You're just one more body taking up resources that someone else could be using.
15: Antibiotics will cure 75% of patients with acute onset Lyme Disease.
16: Antibiotics will cure fewer than 5% of Chronic Lyme Disease cases
17: Comprehensive treatment, including antibiotics, exercise, diet, immune stimulation, herbs, electrotherapies, physicial therapies, massage, infared, Faith based belief systems and thorough study and research -- will lead nearly 90% of Chronic Lyme cases to be "asymptomatic, and in remission, which could potentially last a lifetime."
18: Negative relationships, serve to keep the sick, sick. Remove the poison, detoxify from toxic people -- remove them from your life, and healing will improve.
19: Even the best relationship, can evaporate in moments.
20: You can do your best, you can do everything right, and still lose.

Important points from my years at war.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

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charlie
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....well i've got the classic 'lyme arthritis' acquired in Wilton CT somewhere around 1980.

Anybody who sees my knees and one of my elbows knows something is wrong....I may get the nerve to post a pic sometime.

But they still gripe at me for 'overusing antibiotics'. Most of the people griping are overusing anti-depressants.

Charlie

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lymielauren28
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Number 11: That's the headline on my myspace page because it's so true.

Charlie, the next time someone tells you you're overusing anything tell them they're overusing their mouth [Wink]

--------------------
"The only way out is through"

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cantgiveupyet
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metallic blue, excellent as always, glad I came across this tonight.

--------------------
"Say it straight simple and with a smile."

"Thus the task is, not so much to see what no one has seen yet,
But to think what nobody has thought yet, About what everybody sees."

-Schopenhauer

pos babs, bart, igenex WB igm/igg

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Peedie
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Oh Metallic - all good points. I especially like the one to detoxify by getting rid of toxic people.

The story behind Lyme is such a facinating one! I can't help but think everyone would want to hear it! LOL MISTAKE #1

I think most people don't want to "think", they would rather sit in front of a TV and stare at mindless dribble.

It is true...what they say..."True life is stranger than Fiction".

Peace Out
Peedie

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treepatrol
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I got one for ya I moved about 14 or 15 miles from where I use to live and not one of my friends have even called to see how Iam . These were close friends too.
The move occurred in 2003 this is 08. Cute huh.

God and Family is what you have!!!
and sometimes family isnt even there.

But on the other hand it makes you stonger.

Not even a phone call.

--------------------
Do unto others as you would have them do unto you.
Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.

Newbie Links

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daisys
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I was raised in a family that doesn't accept either pain or sickness, so for the first couple of decades, I just never went home to visit when I didn't feel good.

I live in another state, started out with a mild state of illness, and it tends to be relapsing/remitting sort of illness. So, I could hide it for awhile.

I finally told some in my family, once I was dxed and treatment started. My progress was obvious, so I thought it was very clear and would be accepted. It was by some.

Well, one sister was here recently, and the film Under Our Skin was playing, and she and her husband agreed to come to it. I was really excited about it.

After watching the film, the comments I got were: "Something to think about" (said in a very neutral tone), and "Of course, that shows just one side of the issue." and not one word since then.

I'm not even going to try anymore. The ones who believe I've been sick, don't need proof. The ones who think I've been faking something for 30 years can go on thinking that if they want, I don't even care anymore.

I do have friends for support. I don't go to my family for support, except for a special few.

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ssmillik
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Before I went on antibiotics and was feeling really sick, someone told me to stop thinking about myself so much. I dropped them as a friend real fast.

Since feeling better, though still having symptoms, I'll just say, "I have Lyme, but that's another story", and I change the subject. If they start asking me questions about it, I'll answer it. If they don't want to know, they won't ask questions. I usually take their lead in how much I think they can process.

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ticked-offinNc
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Ha! Thanks Blue, you made my day. Honesty and a sense of humor.
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Peedie
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Daisys:

"I was raised in a family that doesn't accept either pain or sickness".

Geeez.....let's hope they can live up to their own standards!!!!!

My family has been supportative, however the dx is still new.

I think I can handle being outcast by friends. If any of my family should turn on me, I just can't imagine.

I feel badly for you folks who have had family reject their illness.

How blind they see.

Best of Health
Peedie

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