Topic: So FRUSTRATED with Dr. M in Alabama! Help!!!
lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Okay...here's the deal. I've been seeing Dr. M in Alabama for a little over a year.
I went for my appointment Monday and he has put me on Malarone for babs.
The problem is that he refused to prescribe me any more abx with the malarone.
He says he wants to treat one thing at a time...even though I'm in the thick of one of the worst lyme relapses ever!!!
And he knows this! And do you know what my dosage is? One 250 mg. malarone tablet a day for thirty days!!!
That isn't enough to shake a stick at! Isn't that like trying to kill an elephant with a fly swatter?
I am just really frustrated. He has never tested me for babs, he's just treating based on symptoms.
I have frequent night sweats, and I look like I'm about to waste away I'm so dang skinny.
Here's my other question: I have several more refills on minocycline. Dr. M says no abx while on malarone - this just seems dead wrong to me.
Is it okay for me to take mino while on the malarone?
I honestly think Dr. M is a good guy and he has the best of intentions, but my life is hanging in the balance here.
I think he is just very old fashioned and he seems to be treating lyme the same as he did 15 years ago...he just isn't up to date.
I also asked him about rifing and he rolled his eyes and said that was the scam of the century. He could've at least been a little more open-minded.
So...I've pretty much decided I need to find a new doctor.
I'm thinking Dr. S in Florida or Dr. J in South Carolina. Any comments on the these Dr's via private msg. would be awesome.
Also any other Dr. refferals would be great!!!
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
i'm PMing you
Posts: 1173 | From USA | Registered: Nov 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I took mino and malarone at the same time.
if you want the number of my doc in NY let me know. He's very aggressive. I'm being treated for Lyme, babs, and bart at the same time.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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bettyg
Unregistered
posted
please send me a PM on the dr. you are seeing now; we have NONE IN ALABAMA! there is a psychologist only i have .... that's it! thanks!
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daise
Unregistered
posted
Hi Lymielauren28,
Did you know that any doctor can call themselves an LLMD? But that doesn't mean they are really Lyme-literate. For that you need an LLMD who is also an ILADS doctor.
I hear your distress and frustration. Hang-in there, OK?
If I were you, I'd take-up Betty's idea of PM'ing her.
(I'm glad I don't have a spellcheck because I do believe I would have ruined it, with that word I just made-up!)
quote:Originally posted by bettyg: please send me a PM on the dr. you are seeing now; we have NONE IN ALABAMA!
Agree... no good ones in AL .. so "none"
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Ok..
1. Do we REALLY need to discuss publicly the FEW doctors we have that WILL try to help Lyme patients? Do you know how many we loose when this is done? Do you know this garbage gets back to them and they can become VERY discouraged even though they have tried their best.. and some quit. You've seen it happen to some of our best docs if you have been here any length of time.
And... Do you know what a disservice this is not only to their other patients.. but to them personally, their families, their reputations and any future patients who MIGHT find help with them... and who might find a life-saver.... but who won't try because of these types of comments?
2. Please note- If you expect to pull a doctor around on a nose ring and also expect them to treat you ONLY like you want to be treated because you have all the answers ... then it is better for YOU to go get a medical license and treat yourself.. and risk YOUR job, your home, your family etc.
Putting doctors in a position where they are ALREADY risking everything in the world to help you.. and then asking for more or bashing them because they don't bow down to your every desire is totally NOT FAIR!
3. If patients with Lyme can figure out who you are talking about when you use initials here... don't you think others who intend us harm can too?
PLEASE DON'T feed the pigs!
If you are unhappy... fine. But PLEASE don't ruin it for a doctor you may disagree with... or ruin it for others who could loose their doctor when trash is posted on the boards.
4. If you aren't better by a certain point or like you want to be after some treatment... maybe you need to see someone else... and MAYBE they can help you?
But then again.. maybe not. Don't expect miracles. This isn't an easy disease and there is no universal "cure-all" for everyone.
If you want to blame someone for your current situation...
Pick up the phone, write a letter, become an activist and direct the energy and anger in the proper direction... but PLEASE don't blame OUR doctors because they have trouble finding the right answers for each and every person who was kicked in the head by the IDSA.
What we have to deal with is a HUGE nightmare... true.... and it was created NOT by ticks.. not by ourselves... not by the few doctors we have trying to help us....
lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Tincup
I get your point clearly...I also clearly said that I believe he's a good guy with the best of intentions.
Funny how I've gotten a couple of posts and several pm's with complaints against this same doctor.
So, if you want to go tit for tat, it is my opinion that if we have a doctor who clearly has so many dissatisfied patients, we need to be honest about it.
Sugar coating and singing praises when it isn't earned would only do more harm than good.
I followed the rules...I didn't post his name - just the first letter to his name - and people do that all the time on here.
Furthermore I don't appreciate you calling my post "trash".
I don't have all the answers, and never said I did. I am simply asking questions we have ALL asked at some point or another, and that's MY RIGHT!!!
And also Tincup, I wasn't born yesterday and I'm no rookie to this disease. I know it's not easy - I live with it every day, as gracefully as possible.
And finally, I'm not blaming anyone for my situation and I never have. How dare you make that assumption - you don't know me.
Pick up the phone? Write a letter? Become an activist? Direct my energy and anger in the proper direction....
I have spent over a thousand dollars of my OWN money printing up pamplets for the Mississippi Dpt. of Wildlife and Fisheries on lyme disease.
I am now a part of the hunters education program - I speak there every three months on lyme education.
I also recently e-mailed every newsstation in my state trying to get them to do a story on lyme, and am getting my story published in the local paper here.
So next time THINK about what you say before you say it and attack someone else when it isn't warranted or deserved!
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Actually LL, I wasn't looking to go tit for tat with you or anyone.
Sorry you misunderstood my intentions. My fault for not explaining it better.
This post was not addressed to any one person... and it certainly wasn't directed at you personally.
If you'll take a minute to think about it, I don't even know you, so it would be pretty stupid of me to direct any kind of personal comments your way.
But I am happy to see you share your activism efforts with us now. Good going I might add! And thanks for caring and doing so much!
Just so you know... I was simply trying to head off another public disaster before it got started. Folks have been kicked off the board for rowdy doctor posts a number of times in the past.. and/or their posts have been deleted by moderators... and many feelings have been hurt.
It was my hope that this thread wouldn't enter that wild and crazy zone and prompt more bans of people who really want to be here.
posted
It's OK Lauren. Tincup has been around the block a few times and she's right about what has happened before on this board.
I will remove what I said if anyone is concerned about it. I don't usually say negative things about drs in public IF they're on our list... and he's not.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
... tincup, a suggestion,
i also took it your comments were directly aimed at lauren, so could you go back to your post where you were very detailed on your response, and put a CLARIFICATION at the beginning of it so we know WHO COMMENTS ARE DIRECTED at??
to edit, click paper/pencil to right of your detailed post. this will clear up things not only for lauren, but the rest of us who happen to read your comments now and previously.
thanks my friend! TC
you did bring up a bunch of good points! we're just all so TICKED OFF at congress, our health insurances not paying, etc ... we rant too.
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
quote: This post was not addressed to any one person... and it certainly wasn't directed at you personally.
Tincup
It seemed very directed.
How about instead of sarcastic posts, we post what IS acceptable? We want to protect our doctors, that's understood, it just seemed a harsh response.
Like, maybe a simple request of "If we are going to create a post of substandard care, please don't make any reference to the doctor"
She can still get PMs asking the docs name, and she won't know from who, and they could be IDSA posers. So, either way, anyone who wants the information will get it.
Lauren, you took it personally, because it was personal. Don't accept the guilt. You are frightened, and I can understand why.
In my opinion, if the doctor will not treat you the way you feel you need, then it may be time to find another doctor.
Or, ask him if it's okay for you to take the minocycline with it, as you have research supporting a companion to the drug.
Posts: 2903 | From AZ | Registered: Feb 2006
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I agree. Lauren it wasn't me who made that recommendation to you was it?
-------------------- 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.
posted
Now you know why I am self treating, following the tick guidelines. and guess what, its workking.
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Cobweb
Unregistered
posted
Originally posted by lymielauren28:
This board is my life raft. It is the only place I can go and feel truly connected and understood.
If I got kicked off - seriously, I would be devastated. Lauren _______________________________________________ I know the feeling well. When I was new to the web and naive I got blindsided, so now I have a safety net of other sites.
Now I get to chose which life raft to cling to when the going gets rough. I'll pm you.
lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Thank's all for your support. We all walk a very thin line in the lyme community in general.I have very mixed feelings about this.I understand the reasoning behind it. But I also think that we won't see true change in the lyme community until we say ENOUGH IS ENOUGH. When we refuse to hide behind dr's initials and chat rooms and peaceful protests and so on.
The "pigs" don't fight fair and they know who all of these doctors are - they don't need to come on lymenet for answers.
I can promise each and every one of you that when I get better, you will hear LOT'S from me.
I may very well get over Lyme disease, but I will never get over what it has cost me emotionally and I am coming back fighting!!!
I know there are many who get better and move on but I can't do that. Not after everything I know and have seen.�It would be like leaving my fellow bleeding soldiers out on the battlefield and that's just not right to me.
Anyways, I hope I'm making sense here.
The rational side of me understands the need and the importance of being quiet...but the fighter in me wants to scream, "H#@$ No!! I won't be quiet and I won't go away just because you want me to! What is going on is horribly wrong and I won't stand for it!!"
I just think we have got to get LOUD - all of us -REALLY LOUD before we see any true change.
...And we really need a change.
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Good for you, Lauren!
Posts: 1366 | From Southeast | Registered: Sep 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"i also took it your comments were directly aimed at lauren, so could you go back to your post where you were very detailed on your response, and put a CLARIFICATION at the beginning of it so we know WHO COMMENTS ARE DIRECTED at??"
No.
I've already explained it to Lauren and she understands. If any one wants to continue to take it the wrong way and make a fuss.. so be it.
But thanks for asking.
PS.. As far as Cobweb, Kelmo and Booms references.. that IS something that can be said on the board. They want more people to go to another site because of the big bad LymeNuts here... and because people can post whatever they want.. be it true or helpful or not.
So why not just post that website for all to see rather than go behind the scenes to invite folks there? I don't understand that reasoning at all.
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
quote: PS.. As far as Cobweb, Kelmo and Booms references.. that IS something that can be said on the board. They want more people to go to another site because of the big bad LymeNuts here... and because people can post whatever they want.. be it true or helpful or not.
You are giving me credit for actions and words I did not participate in. I love this website, it saved me and my daughter's life and sanity.
I gave my opinion on the attitude of your comment. Right or wrong, that's how I saw it. And, I assumed Lauren saw it the same way, too. I have not talked to her "behind the scenes". I have not recommended she leave Lymenet.
She needed help.
Lauren, don't let this thread frighten you away.
Posts: 2903 | From AZ | Registered: Feb 2006
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Cobweb
Unregistered
posted
I was just trying to be polite TC and not so in your face.
I don't have to agree with the site bashing that goes on to recognize that a lot of valuable , sincere information can be had at other locations.
My main point for Lauren was "don't put all your eggs in one basket" cause sometimes the basket does come unraveled and it's good to have a couple back ups.
Since this site frowns on the full use of doctors' names, I assumed they would also frown on full disclosure of other websites that do allow use of full names.
It's my understanding you can pm someone with a doctor's full name, which is why I chose to pm information about other sites.
If you care to post them, be my guest, but I value Lyme Disease Network,too-and I did not want to get banned. Once is enough.
I merely gave Lauren a list-without any comments either way-she can draw her own conclusions.
Of course one of the sites I suggested was the one BettyG helped get off the ground at MDjunction.com-hope that's okay with you Betty?
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Kelmo... you are right. You didn't actually mention you contacted anyone behind the scenes, this time.
Guess I just got confused when someone sent me these links... and I lumped in the posts they just sent with your name on it... with many others they have sent of similar nature.. the gang mentality.
You said.. "I was just trying to be polite TC and not so in your face."...
And...
"Since this site frowns on the full use of doctors' names, I assumed they would also frown on full disclosure of other websites that do allow use of full names."
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
This doesn't really apply to what is being said here in the individual discussion, but rather an evolution of that discussion. It is more about my idea of how to handle controversy, handling disagreements with family, friends, doctors, even the government. I don't purport to know absolute truth,given I'm always making decisions that are intrinsically limited and always will be -- but here is what I do think.
On the forum, I believe rules should be followed, whatever they may be.
On my own forum for Lyme, I'll do whatever I want. Behind the scenes, the same applies.
I've seen Lorenzo's Oil (sarcasm). Just because the vast majority may disagree with me (even among the Lyme community), it doesn't mean I shouldn't proceed if I absolutely believe in my heart that it's right. That applies to the law, that applies to all ethical and philosophical confrontations. In the end, If I'm willing to accept the consequences, and I've thought it over carefully, that is how I'll proceed.
Just some thoughts for others to entertain if they wish.
[ 18. May 2008, 09:08 AM: Message edited by: METALLlC BLUE ]
-------------------- 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.
You said.. "I was just trying to be polite TC and not so in your face."...
And...
"Since this site frowns on the full use of doctors' names, I assumed they would also frown on full disclosure of other websites that do allow use of full names."
Really?"
Yes TC, really. I did post the name of another site on this board in the open once, and then for a week lived with sad paranoia that I would get the boot.
I decided not to chance it again.
Anyway-I still think it is good advice for all of us to have many resources-and that was my basic point, but now it seems to have become a game of ping pong.
I'm sure LymeNet Europe thanks you for the free advertising. For anyone who does care to visit Europe with only TC as your guide, I suggest you get off the bus for a bit of site seeing on your own because there is much more interesting, scientific and medical information to be found if you look for it.
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Cobweb
Unregistered
posted
Originally posted by METALLlC BLUE: This doesn't really apply to what is being said here in the individual discussion, but rather an evolution of that discussion. It is more about my idea of how to handle controversy, handling disagreements with family, friends, doctors, even the government. I don't purport to know absolute truth,given I'm always making decisions that are intrinsically limited and always will be -- but here is what I do think.
On the forum, I believe rules should be followed, whatever they may be.
On my own forum for Lyme, I'll do whatever I want. Behind the scenes, the same applies.
I've seen Lorenzo's Oil (sarcasm). Just because the vast majority may disagree with me (even among the Lyme community), it doesn't mean I shouldn't proceed if I absolutely believe in my heart that it's right. That applies to the law, that applies to all ethical and philosophical confrontations. In the end, If I'm willing to accept the consequences, and I've thought it over carefully, that is how I'll proceed.
Just some thoughts for others to entertain if they wish.
What we have to deal with is a HUGE nightmare... true.... and it was created NOT by ticks.. not by ourselves... not by the few doctors we have trying to help us....
But by the IDSA. _________________________________________________
Lauren has stated that Dr. M is not ILADS, so does this mean he/she is IDSA ? What else is there?
No wonder Lauren needs help.
BTW-both LLMDs in my area , who are LDA have their own websites if you would like me to post them. The websites I mean, not the names.
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Tincup, I'm not sure your motive for posting old threads I have already apologized for.
When I apologize, it's not just for the moment, but a conscious decision to make a change in my behavior so that I don't offend anyone again. I took responsibility for my actions, and I assumed that I had a fresh start.
As for my one response on Lymenet Europe, I just said I felt sorry for Lauren. It's not an incriminating post.
I will not apologize for that post, it is not malicious or hurtful. Your response to Lauren was a little over the top. I should've scrolled on by, but I didn't want her to feel shame and not come back here where she can get some help.
She probably would've edited her post had she been politely and respectfully asked to do so.
As I mentioned earlier, I understand your alarm in posting comments about doctors on this board. I fiercely protect my doc.
Can we let this go? I am an individual, I AM NOT ON A SIDE !!
All best, Kelmo
Posts: 2903 | From AZ | Registered: Feb 2006
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Cobweb
Unregistered
posted
Just to clarify-I did not "invite" anyone anywhere-I merely gave her a list of other resources.
My intent was not to divide but to provide.
I want to speak for myself-rather than have others mispeak for me.
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bettyg
Unregistered
posted
quote:Originally posted by Cobweb:
Of course one of the sites I suggested was the one BettyG helped get off the ground at MDjunction.com -hope that's okay with you Betty?
carol, of course it is!
www.mdjunction.com does NOT allow fighting to ocur over there! 2 moderators were former members here, and want to keep it a friendly, SAFE HAVEN atmosphere.
cobweb carol/others,
i do have a special favor to ask though, i have extremely super sensitive eyes due to my lyme; could you help me out please?
fyi, you don't have to quote someone here, just show their name and reply to their comments. you can toggle up/down right margin area to read comments.
if you must quote "", then PLEASE delete BOLD codings so it's regular print and doesn't hurt our senstive lyme eyes, like MINE.
2nd line begins with this
[/B] delete those four things and it's regular print.
now please go back and delete the bold codes on all the replies you quoted folks on! i/others would sure appreciate it.
to edit, click paper/pencil on each post you have bolded quotes.
delete the codes, click edit send, and then go to the next one you used bolded comments...
thanks my friend; my eyes xox you! ***********************************
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tailz
Unregistered
posted
I don't think my sweats were all caused by babesia - I think I have bartonella, too, or something that mino and rifampin kill - though I'm negative for bartonella.
I was eaten alive by fleas for an entire year in 1989. They had something.
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Cobweb
Unregistered
posted
Betty- your lyme eyes and my lyme brain are not a good mix because I was not able to follow your directions.
except I do understand you do not like bold print which happens automatically when quoting. But I will try to repost without the bold.
Here goes...
Well I went back and did it the old fashioned way by copy and paste-but now I understand what you mean about disabling the bold box.
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Good grief. I just felt sorry for Lauren for getting chewed out.
I also figured if I posted the link to lymenet europe I would end up being banned.
I gather a lot of information from both sites. I'm not here to "pick sides" either. I just want to help my husband get well. If while I am reading on this site I can offer support to someone else, I will do so.
I do miss Cave on this site. She was a breath of fresh air when it was often needed. (Like now, lol)
Hang in there, Lauren.
Posts: 1366 | From Southeast | Registered: Sep 2005
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bettyg
Unregistered
posted
.....cobweb carol, God bless you for doing that!
yep, what a pair we are!! lol take care my friend!
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posted
Ya know, I'm fixing to do what I am fixing to comment on???? I pray that no one takes offense to what I'm about to say! I mean no harm! I've spent the last 20 minutes reading all of these posts. Why are y'all just bashing each other???? What happened here, as far as I can tell, was between Tincup and LL!!! They settled it. Why not just let it be???? This disease as we ALL know can really mess with our moods! We all deal with anger, deppresion, and so much frustration!!! Maybe someone just had a bad day!!!! I know that I've said things before that I wish I could go back and "put a differant way"! Everyone is basically in the same position--aren't they-----we??? SICK....ANGRY....FRUSTRATED...TRYING TO FIND THAT PERFECT DR. THAT WILL TAKE IT ALL AWAY....ON AND ON. I just hated to see everyone get involed. It's hard for all, and all of us have bad days!!! I know that I don't know either one of you, but Tincup and LL----kiss and makeup!!! Everyone else, chalk it up to a bad day!!! We're all miserable enough with the day to day struggles that come with our disease!
Posts: 351 | From Georgia | Registered: Feb 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
You are right, scared... this was a situation between me and LL.
Just so folks know... we took a moment back then and got it all straight here on this post.... and as far as I can tell neither of us intends to waddle in it or splash it all over the place. It's done.
In the meantime....
We have been over in the General Section .. with her promising not to stick her head in the oven or jump off any bridges .... although she IS being tortured because of some cookies...
And I am over there pretending to be the Webster Dictionary on steroids... and running my mouth non-stop, like normal.
And Just Don is now laughing too... as he talks about his cute feet and how they tend to end up in his mouth at some point.
And we are all laughing.
It's over and done as far as we are concerned.
PS.... On this LymeNet board... and the one before it.... and the one before that one....
I have NEVER seen it stated anywhere that is wasn't ok to post an educational website or link to it on LymeNet for others to view.
I have no clue where that notion is coming from .... hence my reference to "really?"
And yes... I may certainly have missed a rule that says you can't post other sites here... but if that were true.. I would have to question why there have been hundreds if not thousands of links posted on here before, without being removed.
The one exception I believe is if your site has been set up specifically to sell products... and you are here just to promote them.
There is no competition or attempt to exclude other sites here. I really can't speak for LymeNet... but I believe their goal is education and support.
So if you have a web site you are proud of... and that does a good service to the community... go for it! Let everyone know!
The more help we can give others and the more education we can share, the better, as far as I am concerned.
posted
This thread started with LL's frustration over a particular doctor, but took a detour, through no fault of her own, to her fear of breaking the rules and being banned.
Both issues needed to be addressed.
It probably would have stayed between TC and LL if TC had not stirred the pot by making disparaging remarks about others who were trying to help LL.
And I quote "PS.. As far as Cobweb, Kelmo and Booms references.. that IS something that can be said on the board. They want more people to go to another site because of the big bad LymeNuts here...whatever they want.. be it true or helpful or not. So why not just post that website for all to see rather than go behind the scenes to invite folks there? I don't understand that reasoning at all."
Let's stop dancing around the elephant in the room. I resent TC's inference that I offered a list of other sites to LL for the sole purpose of luring her away from the Lymenuts here.
Heck I can be one of the nuttiest of the Lymenutters.
But I also try to be tactful-and knowing that bad blood exists between certain personalities here and at LNE I didn't want to fling elephant dung at anyone. Can you understand that reasoning,TC?
I have been falsly accused before on this board-and banned--so I decided in this thread it was better to be safe than sorry.
I identified with LL's fear and know how devastating it was for me at the time. Hence I learned the value of knowing where else to get support.
Information I passed on "behind the scenes" because with my short term memory issues it's hard to recall the rules at a moment's notice.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I see you still have concerns... or you simply want to keep this brew-ha-ha going for the buds at the other site's entertainment?
Or MAYBE you don't think I can read? Or MAYBE you don't think I have feelings? I am so disappointed. I expect this from others.. but I thought you were more caring.
To be honest... I see what you and others say here.. then I see the mockery and hateful comments at other sites made by several people.. with your name tossed in there too... as if you felt the same and had no objections to the ugliness.
Most folks would back away from posts that are bashing patients and people trying to help them... or they would stand up for them... but I don't see that happening.
Why?
Many sick patients have seen those ugly comments also... and many of them have lost respect for those participating in that playground mentality... (seeing membership or posts decline lately?)
From what others have shared... I understand more than 30 different sick patients have been drug into posts for no reason other than to be slymed or made fun of... or to be gossiped about or be kicked.
People could be on another planet.. and they could have nothing to do with the topic at hand.. and their names are brought up for no good reason and disrespected... and others laugh as if it were some sick game.
For the life of me I can't see how that kind of hate helps anyone or equals anything close to support.. especially for those who are sick...
And I really don't understand why anyone with any decency would willingly participate in bashing parties on any site.. then come here and act differently?
That is like wiping yourself before sitting down on the toilet. It just don't make sense.
You said.. "Let's stop dancing around the elephant in the room. I resent TC's inference that I offered a list of other sites to LL for the sole purpose of luring her away from the Lymenuts here."
Ok. I am sorry that you feel that way... even if I REALLY don't think I said that... and I have reread my post closely to try to find where you are coming from.
I can't find anywhere that I said your "sole purpose" was to lure folks away from here. Could you have assumed something not written.. or maybe had Lyme brain at the time... like you said you did when you didn't post the other web site link here?
Check me now... go back and look.
I made a general comment about several posters, you included, who have made known through many venues that they think basically that LymeNut sucks and the people here suck... and that folks should go to other sites. ("Sucks" wasn't the exact word.. it was actually nicer than some of them used.. but you get the point.)
I've seen bashing of innocent people who have given their whole lives in an effort to help YOU. And what did they get from you for it?
A simple thank you for their efforts would have been nice rather than a kick in the head. And for those who want freedom of speech.... where were they when others were kicking people in the head?
From what I've seen, they were joining in the laughs and punches rather than taking up for them. So sad.
And you don't have to agree with everything people do or everything they say... that's LIFE! That is expected.
But GEEZE... do folks have to be so hateful and so uncaring for their fellow man?
So, again I believe I spoke the truth... but I am sorry you have read my words differently than intended.
Bottom line... what is said here and what I see elsewhere are two completely different things. Am I to believe what people post here on LymeNut.. or what the same people post on other sites where they don't fear being kicked off for breaking rules?
And by the way.. they are not MY rules. I don't have anything to do with LymeNet other than to be a poster like everyone else. I am not affiliated with LDA either... and I do not work for one support group.
I simply help when asked by anyone needing help... IF I have time and IF I feel comfortable with the project and personally support it.
And actually, as several here know... I have taken a stand when people have broken LymeNet's rules... to help them be re-instated.. even if I didn't like what they did when they were booted off... and because they promised to be nicer and try harder to be decent.
You said and reference this in your complaint... "And I quote "PS.. As far as Cobweb, Kelmo and Booms references.. that IS something that can be said on the board. They want more people to go to another site because of the big bad LymeNuts here...whatever they want.. be it true or helpful or not."
Here is a deal....
If you or the others can tell me honestly and prove that you DON'T want anyone to go to the other sites... and nothing like that has ever crossed your minds or been relayed to others via PM, email, etc... or ever suggested that to anyone, please do.
THEN I will admit I was mistaken in my statement.
I said in my previous post, which you have issues with... "So why not just post that website for all to see rather than go behind the scenes to invite folks there? I don't understand that reasoning at all."
Well? I didn't understand it. Plain and simple. And to make the point...
Has anyone posted the site's link after all this time? I've gone into a long explanation saying it is ok to post and even provided examples of others doing it... but no one has stepped up to the plate to post the link. Instead, I just see excuses.
Did all three of you have Lyme brain at the exact same instant and for the past- how many hours or days now... and totally forget how to post the site here.. but in the meantime remember how to get yourself to that same site to post more comments .. AND... still be able to share the link on an email with others.. but HUH??? ... FORGET how to post it here?
That is like wiping yourself before sitting down on the toilet. It just don't make sense.
I simply said I didn't understand the reasoning why no one posted it on the board.. and I meant that.
It was sure ok to make sly comments when I did and carry on about it ... but rather than posting the site... people once again offered behind the scenes information to get to the sites.
You said.. "I identified with LL's fear and know how devastating it was for me at the time."
I do believe I remember your trauma too. I will leave it at that.
You said, "Hence I learned the value of knowing where else to get support."
If I may? Rather than looking for a back up for use when folks get caught taunting people and breaking rules here... I'd LOVE to see people just NOT antagonize others and be NICE.
Then no worries... and no more people, who really need some kindness, need to be hurt. And still everyone can share links too! A win, win, win situation for all.
I am VERY happy you found somewhere else to get support although I personally haven't seen much helpful "support" there.
And since you were able to get support... a lucky one indeed... PLEASE... do us all a favor. If you are thankful for the support you got when you were so sick... please pay it forward.
I really hate seeing you involved with posts that are so downright hateful... and which are egging people on... and which for no good reason are hurting so many people.
LymeNut isn't perfect... but we do care.
I am not perfect.. not by any means... and when poked at continuously with a stick from folks I've tried to help ... YES... I can get bent out of shape and hurt too.
I expect this hate from the ducks and IDiots.. and face that every day. I just never expected it from folks who claim to be "supporting" others and who let on like they care.
And I just hope I never get to the point that I wake up each day looking for folks to either hurt, ridicule or hate... and I truly feel sorry for those who can't break away from that life style.
And with all due respect.. I am done with this topic. I have apologized to LL, explained myself completely to you and everyone else... and will move on to better things... and hope that others think about being kinder and more helpful.. and will do the same.
Good night.
And for those who feel that they are "so smart" by stalking others and copying their posts to use against them later... or to take to other sites so they can royally bash them...
Be my guest. I'll leave the post here long enough for that to happen... but then it comes down... unless I hear of it being used.
posted
TC: Has anyone posted the site's link after all this time?
Actually you posted the site's link TC, which is why I didn't feel the need to. But you only posted the gossip when there is so much more. So I would suggest, those without tunnel vision, are free to visit LymeNet Europe http://www.lymeneteurope.org/forum/
LymeNet Europe is especially helpful if you are skeptical about some alternative methods of treatment.
They all know I post here,too. I take what I can, and give what I can on either site.
There is excellent information in the Science/Medical/and General forums. And as TC has suggested if you don't feel like participating in the mud slinging-just SOB-I learned that here on Lymenet.
Other useful sites are www.mdjunction.com , the new Calda website and The Lyme Enigma. Just as everyone's treatment varies-so does everyone's taste in websites.
IP: Logged |
posted
Wow, talk about beating a dead horse (or in this case, elephant)! Just out of curiosity I counted (don't have the concentration to go through all the tit for tat) but I think you won Cobweb (at least in numbers), 15 posts to Tincups 8.
I've looked over at LNE and I wouldn't send newbies there, too much caustic stuff, running down people from here -- almost a vendetta going on against some of them.
I must say that one poster there really seems to be wanting to do something helpful for lyme disease info and her name is Yvonne, so kudos to you for staying out of all the mud-slinging and posting good info.
Oh, as far as being nice, I don't think that's what LNE is about. I don't get the feeling from what I've read over there that it's a "healing" place.
Sure hope this is done now.
JMHO
[ 20. May 2008, 01:21 PM: Message edited by: Looking ]
Posts: 590 | From Canada | Registered: Oct 2007
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Cobweb
Unregistered
posted
It is hard for me to go through large blocks of information which is why I broke it down to many smaller posts-hoping it would be easier for other's to follow too.
Thank you, Looking, for pointing out that there is useful information on LymeNet Europe,too. and for understanding different strokes for different folks.
I've gotten it out of my system now, I'll go back and delete. I told LL she didn't do anything wrong-and I don't think I did anything wrong either.
posted
Please don't do this again you all. How sad, how totally unnecessary.
I don't post often here anymore but I read lymenet every day.
And the people who are bashing each other used to be such good net friends and supporters, helpful to everyone who desperately needs help. Like I did. Lymenet was my lifeline.
I have seen this site blow up several times over the years. Don't.
Posts: 190 | From BC Canada | Registered: Jul 2004
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charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
....I find it troubling too, and after 10 years on this site I have too many friends on both sides to even want to participate in this stuff.
For that reason I've quit posting at LNE and that lyme enema or whatever it is site.
And I absolutely understand TCs position that any LLMD whether inept in some ways or not is better than no LLMD.
I've made up my own mind that the only person I'm going to pick on whether they agree with me or not is that lawyer in PA who deserves it....maybe all of you should join me.
Charlie
Posts: 2804 | From Texas | Registered: Oct 2000
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