mbroderick
Frequent Contributor (1K+ posts)
Member # 5220
posted
Too many new people posting...not returning to check posts...not posting in 'Medical'...using terms (LLMD ,abx, dx)they wouldn't be aware of as newbies, etc. etc.
DON'T PM WITH LLMD INFORMATION!!!
There are numerous posts already with links for information about doctors like the LDA. There is also a Support Groups link.
Let them take the initiative themselves to locate a doctor. We can't take chances sending out information right now!!!
Posts: 2097 | From PA | Registered: Jan 2004
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posted
I am a "newbie" with this website and I attempted to go to LDA for a physician referral but after entering my zip and state it gave me different areas across the country then locked me out. I see in other responses people had similiar problems with that site (?) Any suggestions?
Kelly
Posts: 64 | From Maryland | Registered: Oct 2006
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posted
I understand the need for caution, but I don't necessarily think that a body of prior knowledge before one posts is a red flag.
I can use myself as an example. I read, and read and read here and elsewhere before I ever posted. By the time I posted, I was familiar with terminology and could use it.
I also contacted the LDA but never received a referral. My husband is MS diagnosed and I personally refer people to this site for help and sometimes to seek a doctor. It is such a necessary lifeline, I would hate to see you guys seriously restrict what you do----there is no where else for many people to go.
I offer no solution to this dilemna and I understand the need for protection for llmds. This just reflects the truly sad state of affairs our medical community is in.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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posted
I agree!, this LDA site is not the best place to get the names of LLMDs. I had much better luck here when I need a new LLMD.(nothing like talking to those who have experienced it.
I also read before posting and learned as I went along. Have had a LLMD for many years be4 his recent retirement I am familiar with many terms.
As for posting and not returning to answer or respond, those of us who are not too ill now or very ill may have other concerns in their life to be here nightly.
Don't jump to conclusions, give people a chance, but don't be dumb enough to send money or drugs out so quickly!
-------------------- To win this battle, make the time for exercise and fitness activities! There is no shortcut to any place worth going! pegee4 Posts: 59 | From Hamptons, New York | Registered: Aug 2006
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mbroderick
Frequent Contributor (1K+ posts)
Member # 5220
posted
Thanks, everyone. I was a newbie once, too, and got invaluable information and doctor recommendations from the wonderful folks on LymeNet. Maybe I'm being overly cautious. I just don't want any more of our doctors scrutinized.
Posts: 2097 | From PA | Registered: Jan 2004
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bettyg
Unregistered
posted
Here is what I have been forced by the trolls to go to where before I gave people the benefit of the doubt where Lou B tracked them, and they were found to be TROLLS !
UPDATE: 10-21-06 TROLLS who are troublemakers have been hitting our board the last 6 months but last 3-4 weeks really bad.
BEFORE YOU FREELY GIVE OUT OUR LLMD NAMES, *****************************************
please make sure they have a long story telling us what has been going on .
is this for themselves; for a child...what age?
recently bitten w/bulls-eye rash, NO RASH, have symptoms for years, etc.
What diagnosis have they had? their symptoms? *********************************************
I've been sending out to newbies since EARLY this year. I've seen many trolls post openly; easy to recognize. Many are trickier.
I NO LONGER WILL SEND OUT LLMD lists on 1st posts, etc . *************************
It's so sad for LEGITIMATE folks but the trolls have created an unsafe area to post in freely for help !
Thank you for understanding MY new policy and I know of others who have provided names will be even more cautious in the future.
How do we know they aren't collecting ALL our LLMD names to turn over to more state health depts. for future charges? WE DO NOT !!!
Example, there was someone suspicious who my gut said was a troll, but I read their 1st post, and gave them a chance. I then sent them my 19 pages of newbies links/advise. They couldn't wait to respond that they got me .... ``I am the turdmaster''! Bettyg
posted
I too am new to posting here but have been reading for a couple of months now. I wanted to wait for my results (CDC positive) before posting. I have read the newbie links. I hope the reason why no one has PM'd me with a doctor to assist my LLMD isn't because of this. I can't start IV until I find a doc willing to take over after the 2 months my LLMD is limited to. Sara
Posts: 81 | From Nashville Tennessee | Registered: Oct 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Broderick and Betty and all-
I understand and share your concerns, but I think it is sad and unnecessary to allow fear and suspicion to take over.
I asked the LDA for referrals long before I found Lymenet. I understand their constraints, but it took WEEKS before we heard back, and even then, we had no way of evaluating the names we received.
We thought we could trust the LDA, but choosing a doctor in any circumstances is very very personal, and a blind referral when the circumstances feel and are so urgent isn't ideal.
Back to trolls. Maybe it is time to think up another way of handling requests for LLMD's. The requests that come in are few enough all thigns considering.
How about if the lymenetter who would otherwise post a helpful reply instead sends a PM requesting that the poster CALL her/him? Any legit requester should be more than happy to do that. And I think any of us could pick up hints of a false story when speaking directly to someone.
I think that in any case each of us should ask our own LLMD's directly how THEY would like us to handle this situation on their behalfs. After all, since they are the ones in jeapordy, maybe it is they who decide how much "protection" they need, not us.
Please don't let fear interfere with what is best about this board- the wrong side wins big if we allow that to happen.
Dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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mbroderick
Frequent Contributor (1K+ posts)
Member # 5220
posted
I think that your idea is a good one, sometimesdilly. Unfortunately, I don't have a lot of time to be getting into lengthy phone conversations with people looking for LLMD's. I work about 12 hours daily and need some 'down time' before going to bed! There must be a way to screen people here...
Also, the LDA website worked well for me. I've gotten numerous additional LLMD names from there. The other resource that people forget about are the Support Groups. Their phone numbers and email addresses are listed, as well as location. This is a quick phone call. I presume that most 'heads of Support Groups' maintain a list of local LLMD's. They've also heard feedback from group members!
Posts: 2097 | From PA | Registered: Jan 2004
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bettyg
Unregistered
posted
Dilly, Those posting for LLMDs is down from after Dr. Burrascano announced his retirement due to all his patients then looking for other LLMDs.
fyi, whenever I saw a newbie's name in our directory which shows the LATEST 5 newbies, I'd automatically send them my newbie's links/advise.
1 newbie sent me 12 PMs asking about drs/etc BEFORE ever posting their 1st public post.
Also got many PMs from newbies who turned to me for answers vs. posting publicly for answers.
Many wanted me for a steady person to chat with; sorry, I just don't have that type of time for 1 on 1s. I try to help as many as I can here on board.
Marian, Tutu, and I see much more than the normal person coming here to post/reply.
Trolls have been so bad that Lou B asked me to STOP sending my newbie's info/advise (so they couldn't read up on stuff to make up storiees).
As Lou B once said in a PM to me; it never fails; when I go on vacation they hit this board hard each time. It's true again.
Dilly, I was once the most trusting/naive person you'd meet. But times have changed for the worse, not better. I've had to change accordingly.
You mentioned abouted folks calling us. NOT good for me. I'm home most of time, but in/out of bed from 3-8 times daily due to overwhelming FATIGUE.
I don't want my husband bothered; we don't have an answering machine, and he's deaf in 1 ear and has a really hard time hearing, etc.
Dilly/others, may I suggest this?
Each time you come to the board, click on directory, and see the 5 newbies names. Click on their names to see their profiles, then you will SEE for yourselves what we see daily.
Last week out of 5 newbies, 4 were obvious trolls that were just plain obvious.
I believe Cave spoke somewhere about this too; she's seen a lot in 10+ years on this board!
Anyway, these are my thoughts on what's been happening and why I have chosen to do what is needed now.
I hate that it's come to this, but the trolls will NOT leave this board alone. Bettyg
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Thought about this bumping along on a haywagon ride in quest of a perfect pumpkin to pick....
To MB and Betty: you're right. One on one calls wasn't a realistic idea. Too energy and time consuming/draining.
Referring posters to state support groups makes a great deal of sense, MB (in addition to the LDA).
But anyone who still intends to refer their own LLMD in a PM I think is obligated to check with their LLMD to see whether or not that DR wants his/her name passed on.
I'm going to ask my LLMD, and if he says he's OK with my doing so, I will continue referring him if the request feels/seems legit.
Betty- for other threads-- Maybe this community can have some volunteers do Troll Patrols, with moderators getting to decide the definition of Troll.
Whatcha think? Dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I'm one of the newbie's here and didn't find this board until after my blood was taken from my local N.D. to send to Igenex to speed the process before seeing the LLMD HE referred me to.
Since it's out of state, I was one of those people that asked about local doctors. I did some lurking before posting since we are scared.
Most of us have gone through years of all the specialists telling us there is nothing wrong (almost 5 years now for me).
Oddly, my daughter in college told me her roommate had lyme, her mother also has lyme and was involved here and that I should check out this web page.
Since I don't have a diagnosis yet and these are some of the longest 2 1/2 weeks I've felt since I let them give me steroids in my neck for "degenerative disc disease",
I've definitely been trying to be well informed. Newbies need this place. I am too new to know about how trolls work, but there are many of us BEGGING for anyone to help them.
We come here in pain, tears in eyes and not knowing what to do. Granted I personally owe finding this site to my daughter, but most lyme web pages had me believing couple weeks antibiotics and I was fixed.
I honestly don't know how to fix your problems and I SURELY don't want any more doctors in trouble, but if some of these newbies have a confused mind like mine,
I have trouble following instructions. So all help was appreciated. I just felt a need to speak out for the newbies that are desperate and I would hate to see us penalized.
I do hope you find your solution for BOTH sides. Thanks for listening.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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If anyone comes to the LymeNet Flash looking for help, please lets not assume they are anything but a victim of these horrible tick borne diseases and lets do our best to give them help.
At the very least, if they are looking for a Lyme literate doctor (LLMD) they should be given the following info ... The best diagnosis is done by a Lyme Literate Medical Doctor (LLMD). This is a doctor who is highly experienced in the diagnosis and treatment of Lyme disease. If you are looking for Lyme Literate Medical Doctors (LLMD)
-------------------- Lou B Posts: 2200 | From Mount Hope, New Jersey, USA | Registered: Oct 2000
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bettyg
Unregistered
posted
Lou, welcome back from vacation; we sure missed you and now you know why! lol
Yep, while you were away enjoying yourself, we were hit hard with trolls.
Since I sent you an email to your home and got your automatic response as to when you'd be back, I took it upon myself to post when I saw definite trolls coming online so others would not respond to their posts.
The others who have the complete list of LLMDs saw this happening and we PMed each other advising one another as well.
So Dilly, that's why you saw me pointing this out to others and calling a troll a troll.
From what I've understood by PM from Lou B, only HE can remove the posts of others. He's the most active of the volunteer moderators we have here. I hope that explains things clearer to you.
So Lou, glad you are back on board.
Also, I recently put the LDA web site info that Lou showed above in my seeking drs. post in MEDICAL, so it's there.
quote:Originally posted by sometimesdilly: Maybe this community can have some volunteers do Troll Patrols, with moderators getting to decide the definition of Troll.
That IS being done.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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I am a newbie to this site and found posting what trolls do and what trolls are could be the answer to eliminating who's a Troll.
I can tell you that I came to this site after much reading and help from Lyme Literate friends and family. So I also had some savvy terminology.
Only after reading what consitutes a troll did I suspect my initial action on the site to be seen as a troll myself.
Another words, I didn't first introduce myself on the site I simply responded to a blog...
Although I do not offer a solution, maybe the forest needs trees?
Posting regularly regarding Trolls and keeping all of the newbies aware of what Trolls do and don't do will then take care of itself? Posts: 158 | From PA | Registered: Oct 2006
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posted
"...there was someone suspicious who my gut said was a troll, but I read their 1st post, and gave them a chance. I then sent them my 19 pages of newbies links/advise. They couldn't wait to respond that they got me .... ``I am the turdmaster''! " Bettyg
Turdmaster : Definition: one who shovels the "shale" against the tide. Posts: 2708 | Registered: Feb 2005
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bettyg
Unregistered
posted
To all reading this,
Lou B sent me a nice pm today stating that if we have problems, to PM TOBY and he could handle things with the assistance of Jenifer.
Toby is the assigned moderator for SEEKING DRS. forum here, so just go to the top of the page and click on TOBY's name.
This will bring up Toby's MY PROFILE; upper right shows SEND PRIVATE MESSAGE, click on there and send him reports of trolls or whatever your problem is ok! Thanks. Bettyg
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posted
Where can I read this info on "What is a troll?"
-------------------- To win this battle, make the time for exercise and fitness activities! There is no shortcut to any place worth going! pegee4 Posts: 59 | From Hamptons, New York | Registered: Aug 2006
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posted
I only have 27 posts (last post was earlier today in the General Support forum) but I have been a member since Spring of 2004. I believe that I have some very good information for the doctor referral network. Is it possible that someone could PM me. If I do not feel comfortable with the message or I do not recognize the user name I will not share the information. Thanks.
Jeff
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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bettyg
Unregistered
posted
pege, go to OFF TOPIC, LOU B posted links/story there about troll definition ok!
posted
ya know, i'll reply to anyone who wants a doctor referral...we have ALL seen many many doctors before we find/found a LLMD...so when there is a request regarding doctor's in MY area i'll respond...
I truly can't believe you all have time to think there are all these 'trolls' out there...let it go...these people need our help. We've all been there trying to find the best doctor for ourselves.
sorry, maybe i'm off on the wrong foot this morning....but i like to help people...i know what i've been thru (as many of us have been thru) and i will not not stop helping to provide information.
my two cents...i apologize if i step on any toes.
diane
Posts: 121 | From Gaithersburg, MD USA | Registered: Apr 2005
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posted
I am a newbie too and having the same troll imitating notions born of shyness to reveal myself. And also, after 10 years of lyme decline and ducks and others looking askance at me, I am even shyer still. Lymenet was a miracle for me and today finding other newbie lurkers who mistakenly acted trollish has given me courage to try again.
You'd think I'd be immune to being laughed at, given all the ducks I've amused with my weird symptoms. But feeling so awful seems to ruin a persons gameface sometimes. But this isn't news for anyone here. Thank you. Thank you for sticking it out, and being here .
lymiebean
T
-------------------- na Posts: 16 | From Mendocino, | Registered: Sep 2006
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quote:Originally posted by digirl02: I truly can't believe you all have time to think there are all these 'trolls' out there...let it go...these people need our help. We've all been there trying to find the best doctor for ourselves.
Trust me, it's NOT our imaginations running rampant. I guess you haven't been here when it happens.
The truth is, NOT everyone needs our help. Sad, but true....we have some weirdos running around here from time to time....and they DON'T have lyme.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
up for newbie's ... please make sure you give us your story; I listed specific questions above; please answer them when you are posting for a LLMD, lyme literate MD. We thank you.
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Good morning all.
I guess I am still a newbie. This website has been a godsend to me.
I was PM'd a LLMD in my state and am soooo grateful to be linked to someone who can help me.
I am not sure I understand the troll thing, however I do have some medical backround as being a
Speech Pathologist for over 17 years in the hospital system. Therefore am somewhat familiar with some medical lingo.
Please make some allowances for us newbies.
I sure do want to protect the LLMD's. I would not want anything or anyone to risk my chance of getting better.
Please advise us "newbies" on what to look for so if someone PM's us, we can recognize it.
I just finished my Nuclear Stress Test....The cardiologist said my heart was "perfect".
It was such a relief I cried for over 2 hours. I am glad there is still one part of my body that for at least now is functioning correctly.
Now off to LLMD on Tuesday...which by the way I would not have found without this forum.
I contacted the local LDA, and they were unable to help me..
Please recognize for those of us who are not trolls how invaluable the info you provide us with is.
Sincerely, Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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bettyg
Unregistered
posted
quoting Geneal, I just finished my Nuclear Stress Test....The cardiologist said my heart was "perfect".
It was such a relief I cried for over 2 hours. I am glad there is still one part of my body that for at least now is functioning correctly....
CONGRATS Geneal on your perfect heart test! It's something we lymies are all concerned with.
We understand where you/other newbies are coming from but it's those few rotten apple trolls that have made us change on being very CAUTIOUS.
Go to activism and read posts about Dr. Jones and Jemsek, both having been called in front of their state's health insurance boards in 2006, and Dr. Jones is still going on! Then you will understand perfectly why we are doing what we are doing. Good luck tomorrow at LLMD appt.
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Thanks Betty!!
Saw LLMD. Posted under General Support for a heartfelt thanks and answer to my prayers.
I think it would be safe to agree to leave the "looking for Doctor's" forum to the more experienced members of this forum.
Hopefully this will help guard against possible trolls.
As a newer member I am not sure exactly what info sets a troll apart from someone who really needs help.
Have PM'd you with some info.
Thanks, Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
Hi osp
to me that means outer surface protein-odd handle
I want to chat with someone on the phone and hear their lyme story before I give out LLMD info. That's just the way i feel most comfortable
janet.
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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posted
this is in regard to the paranoid concern in oct about trolls.
the concern was newbies knowing terms like-LLMD, ABX, Dx. well guess what?-i am an rn(30yrs) and i know those terms. plus i had the diagnosis for for 8mos before posting here.
we need to be careful but let's not go overboard
Posts: 76 | From Kalispell, Montana | Registered: Dec 2006
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posted
It's a balance, like I always say. we have to be aware of what might be going on; that there might be some unfortunate souls sucked in by the corporate dictaorship who try to ...'expose'.. anything they consider, uh, ...'alternative'..., and make trouble for anyone who discovers that some "alternative" treatments are best.
But we're not going to win by hiding from them- without making it tremendously hard for too many people who are genuinely in trouble, seeking treatment.
I can't help it think that if it had been just a slight bit harder for me to find a lyme- literate doc, I very might not even be here today (seriously, big-time; I had babesia and don't have a spleen!).
The more they try to keep us sick and kill us, the more we have to get what's happening into the open. But this will probably generate some difficulty for a certain amount of time. But it has gotten to the point where the quagmire is so deep we need to start constructing bridges.
Also, freely talking about practitioners and types of treatmentis especially important in alternative- to any degree- medicine. For, all treatments, even in the LLMD category, are not equal, and are not all suited to the same patients.
Of course we need to be careful- there are lots of charlatans about. Most but not all, are in the government and 'regulatory' entities that have gotten out of control. But again- the more info we get out, the better, in many respects; scum does not do well under bright light. But I believe it's still good policy, in the present situation, to generally not directly post doctors' names, except in those case where the docs themselves have totally given the green light to do so.
It's just like everything, folks; it's a delicate balance. And to keep "it" from crashing down we have to move gingerly, but at the same time, quickly and decisively when necessary. All while being sick or recovering from being sick--- Who ever said life was ...'fair'...? But many of us know and I hope all of us can agree, that it's definitely worth it...
Best Wishes to everyone for a wonderful season-of-reNEWal!
DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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