cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
It is really becomming too negative for me to even come here to read. There is chaos in medical about whether a post should be there or not....and this is an ongoing dispute. When you are so sick you really dont need to come here and read this stuff.
Then im basically called a troll in seeking a dr..and told to take more initiative.....so glad i found 2 other sites that are very helpful.
When i first started posting on this board it was more supportive...
see ya around sometime.
-------------------- "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 Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi Can't
No ! Don't go.!
You have helped so many people here, myself included.
If you get more than 20 people togeather in a room there will be negative and positive feelings mixed in there togeather.
I hope you can SOB the negative part and keep the positive side.
We LOVE you and I for one will miss you alot!
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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I have been meaning to PM you. I am sorry you are having such a tough time at home and with Lyme or whatever the hell we have making us so sick. PM me so we can chat. I know the last thing we need is more frustration in our lives. You are an asset to this board don't let posts get you down.
Love, lyme x 9
Posts: 399 | From Texas | Registered: Apr 2005
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I looked at your post in Seeking a Doc and I can understand your frustration. In my opinion I would trust someone like you with over 1000 posts over the other person with not very many posts.
I personally don't have a problem with your question. Hubby has been to at least one supposed LLMD who would not diagnose him with Lyme even with a positive PCR -- I didn't know about this board before that appointment -- what a waste of time and money. Have heard through this board that the doc now has Lyme -- how ironic!!!
I don't agree with the board policy about not revealing LLMD's names, but I do follow it. In my opinion the policy does NOT apply to private messages -- PRIVATE means private.
Hope you will stick around or at least check in from time to time.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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bettyg
Unregistered
posted
Can't, I hope you will change your mind and stay.
I haven't read your specific question in seeking a dr. but will now.
We all have our bad days too, which you know only too well. I'll miss you too if you do go. We learn from one another.
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Carol B
Unregistered
posted
The other day when things got messy in Medical I chose to hang out in the Need a Smile thread. It was a nice break from the seriousness of other posts.
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Thanks guys.
I even put my email in the original post- removed it the other day after blues post since it was my personal email.
I just saw Tin posted.....i dont feel that i over reacted and wasnt asking for people to post on this sight.......BIG duh!!!! i dont think anyone would even post dr info on that thread anyway.
I have a lot going on....finding a llmd etc.....
i dunno still feel like this is not the place for me at all.... heck i dont even now if i have lyme.
nuff said
-------------------- "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 Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
I am so out of the loop. I have not been around for awhile. Due to feeling bad. Also because it seems alot of my post seem to get ignored. Any way I hate tosee you leave.
I am sorry you have been treated badly. I agree with you that we are here for support and ways to find out to get well.
If you don't mind maybe you can PM me and tell me the other Lyme forums you have found to be helpful.
I would appreciate the info. Thanks. Blessings to you. Love & Light, Yemaya Posts: 188 | From NM | Registered: Feb 2006
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Sorry that you are having a rough time and not feeling supported.
Once again, I seem to have not noticed any chaos.
Maybe that is why I can be here all day with a half dozzen kids and most of the time be happy as a clam!
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
CGUY,
I tend to agree with the cup...I read your post in seeking a doctor...and I would have responded with a pm or and email.
I understand your frustration in finding a doctor to treat you AND sign the appropriate paperwork...
However...I found nothing in Blue's post but SUGGESTED behavior.
Perhaps it's BECAUSE you're soo ill that you took it the wrong way...
We're all sick here...we all forget that sometimes.... I see you have some supporters...and you will have some detractors...no matter where you travel.
I find it hard to believe any LLMD NOT willing to treat based on a Clinical diagnosis...
You may want to get in touch with Dr. Fallon and his study in Columbia University...
They'll send you info and get you tested by Stonybrook....
Once you get a script for IM or IV meds...they're easy enough to administer yourself.
If you decide to stay you're welcome... If not FARE WELL.....zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Just getting back from being away and really sorry to hear about this whole ordeal.
I see both sides...totally relate to you and your side cantgiveup and also understand why blue said what he/she did. I guess I dont agree with HOW it was said though since it could be construed as being pretty rough. And we need things to be soft---no matter WHAT our place in our illness is. Each of us has our own unique makeup and some are more sensitive than others and most times it has nothing to do with the illness. We are the sum of more than just how sick we feel or how sick we are. If someone is sensitive, it might be coz of LOTS of other things. And who is to judge what is over sensitive anyhow?
I hope you dont leave.
I hope you are able to find a doc that can give you the meds you need to get well.
I know you are not a troll.
I think you are a wonderful asset to lymenet.
You take good care, trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Huh? What? Where?
Is everything just buzzing by me?
What thread? Who's picking on who?
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
<<<<< Can'tgiveupyet >>>>> Sweety,on another board I go on,when folks get bothered they take a little vacation break,if you need to take a break,do it honey! But then please come back, each person adds so much, and you'd be super much missed if you don't come back!!!
Silverwolf sending hugs and prayers!!!
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Well..
Looks like I woke up this morning wearing the BIG BAD WITCH costume again!
I hate when that happens!
Here is the link to the post... Please note some entries have been edited from the original form.
I am sorry anyone thought.. even for a minute... that I would purposely deny anyone care ... refuse to help them... or pounce on their head when they were ill.
"Shes not a newbie and I know damn skippy that this woman is ill. To turn her away is pathetic."
"or just jump on here and tell her to help other sick posters when she herself is sick and needing help?"
Also sorry that someone would read my post and think I am rather stupid... but then.. sometimes I am.. and for that I appologise.
"I just saw Tin posted.....i dont feel that i over reacted and wasnt asking for people to post on this sight.......BIG duh!!!! i dont think anyone would even post dr info on that thread anyway."
Now.. does everyone understand I am sorry?
Can I take off the big bad witch costume now?
I hope so. It doesn't seem to be fitting me quite right??
Think I'll go out and change outfits in the light of the FULL MOON! Then take a break from the board and get some much needed things done.
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Whew!
Can't please don't leave forever. I believe you will need this board for your health. Don't let the post of one person keep you away.
You need help, you are very ill. I didn't personally respond to the post because I have no idea what Bicillin is, or what it does, and being waaaaay out in the desert, we are short on LLMD's to refer you to, but would do it if you lived out this way. No one ever asks for a doc in AZ.
Personally, coming from someone who is not sick with lyme disease, but is still sensitive, I would've been taken back by the post of Blue. It was information with a 'tude. Necessary information, but misplaced anger.
But, there are others on the board who post responses that way, and I think we need to take a breath and realize that their brain is scrambled by bacteria and meds.
So, please forgive the one, and listen to the MANY MANY wonderful people on the board. This is a great, supportive place. We need your experience. We want to see you come to that place where you can say "Yippeee! I am having a great day today!"
If you decide to go, I wish you well...I know you have suffered greatly. Hope you get the help you need.
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Er <<<<< TinCup Chere' >>>>> Okay hon' take a break if you need but please do come back!!!
Seriously, Newbie that I am,I still think each person adds something special,we all have days that we feel really down and frustrated,and things just might not come out right,or are misunderstood.
Truly each one adds something,and we all need each other,especially right now!!!
Many <<<<< hugs >>>>> to you,and much loving prayer headed up for you and <<<<< Cant'giveup' >>>>> and each of us,trying to beat these darn 'bacteriumesiums' and get well!!!
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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posted
Hey, neither one of you has been given permission to leave here, Okay??!
We want and need you both! I like you both, very much!!
If either of you leave, I'm gonna find out where you live and bean you on the head~!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Now looky here, Can't.
I've seen about a gazillion of yer posts and I have never seen anyone abusing you.
Matter of fact, all I've ever seen is support. Lotsa support. Suggestions. Help.
One person posts a reminder thread -- which, by the way -- I read. It's fairly bland. It doesn't say anything like, 'Hey you idjits, all a ya shaddup over there right now!!!!' In fact it's a pretty mellow and friendly reminder we all need to hear from time to time in case we get complacent.
Now, I know you don't feel good and you're frustrated at trying to find treatment. So you couldn't help but take that personally.
But after 1300 or so great and supportive posts, dontcha think yer cuttin a pretty wide and sudden swath with "it's becoming too negative here" -- ??
As to Miss Tincup... Well, she wouldn't look very convincing in a witch costume. You see, she spends all her time fighting for us. She has our back. I vote for angel costume.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
There have been times when I've felt people have posted things on the board that have sounded bristly...but it's most often because I'm feeling overly sensitive or in a lot of pain.
Usually, I try to remember what Tony said: we're all dealing with a disease that affects us neurologically and psychologically, whether we have Lyme or are caring for someone who does.
Just today, I made an observation about someone in my life -- how that person really doesn't care about me. My SO was quick to respond that I was simply wrong in my perception. Lyme and being so sick for so long often gives me a distorted sense of things.
I've read the posts and agree with trails and some of the others -- I can see both points of view. The truth is, we all need each other and need what each of us offers, in the way of information, perception and care.
I frankly don't think anyone should leave, but that's my opinion.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Well.. you all are sweet.. BUT... I've not spoken correctly again.. obviously?? I am NOT communicating well right now, I assume?
I said.. "Then take a break from the board and get some much needed things done."
What I meant was...
"I went to town yesterday. I needed groceries badly. I did two errands first.. and got so tired doing them that I had to come home because I didn't have the energy to walk through the grocery store. So TODAY.. instead of being on the computer like I have been for the past eight days straight writing up the proposals for the new treatment center and helping folks with Lyme problems.. I was going to take a break from the paper work.. and the board... and the phone... and the computer.. and try to go get my shopping done so we won't starve."
Hmmmmmmmmmm.. That brings up another point.
SOMETIMES what we say here.. and what we mean to say.. are not the same thing. And when folks read what we have written they can't always get the whole picture or meaning from just looking at the words on the board.
So.. again I appologise. I didn't mean I was leaving the board...
HA! You aren't THAT lucky...
What I meant was all the other stuff that went with it too... that I didn't explain fully.
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Yeah Cup,
I think that if we had a audio board...we could get the ups and downs in our speach patterns...
As it is in this dry black and white printed word...
A LOT is lost in intent...and missinterpreted one way or the other...
because we can't HEAR how it is being said...
We have got to take that into consideration!
GEEZ CUP...get off your butt and do something for a change, will ya!
Sarcasm and teasing is kinda lost when all ya have are the words...YA KNOW!?
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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