Topic: Why I won't give doctor names anymore on seeking forum
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
It is not possible to tell a troll from a real patient all the time. Our doctors are too precious to be risked by giving names to strangers on the internet.
This is why I have not helped much in the past on the seeking a doctor forum. And my recent experience with someone who used a female name, gave no information about "her" situation, did not acknowledge my private message, and did not reply to a public request for more information....this convinced me that we may be giving names to trolls.
So, my solution is to follow the example of those who give support group links instead. That way the people who say they need doctor names can be vetted more thoroughly on the phone or whatever. More opportunity to weed out trouble making trolls.
Posts: 2888 | From USA | Registered: Mar 2004
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
Trolls are, indeed, alive and well on Lymenet. I know from personal experience. I was attacked by an "unknown" on this forum who saw one of my posts and used it against me in a slanderous way, which resulted in the loss of my job.
People can do anything to find out who you are, even if you don't use your real name. That's why it's best to not even reveal what part of the US you live in. You could be tracked that way.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
We're fooling ourselves if we think the powers that be don't know exactly what doctors are LLMD. Believe me we aren't hiding anything.
It's more about not using the names in open forum to avoid posting their treatment protocol. Someone bashing a LLMD doctor. Powers using internet info against our LLMD if they decide to go after them.
Today many LLMD have web sites and they're not hiding a thing. Many LLMD haven't given our permission to give out their names.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
The medical board and insurance companies know who treats lyme. Map is right.
The alternative to not helping with a list in your area, is taking the chance that someone in real need will not have any idea where to go for treatment. Do you remember how you felt when you first got diagnosed or thought you had Lyme?
I for one, would have been in dire straights if someone here did not help me out when I needed it. I know the panic that comes from knowing you have this God awful disease and no knowledge of how to be helped.
I would rather take a chance on sending a list to a troll than not helping someone who really needed me to send them some names.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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posted
We used to reply to them and ask a few questions. IF they did not reply or we were not convinced they were real, we didn't give out the names.
We often asked how long they'd been ill, have they seen any doctors, etc.
We could go back to doing that.
Poppy... many times these people go to 3 or 4 Lyme boards and they don't even remember where they posted or how to get back to it. I am convinced of that. That is why so many never see our replies.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I'm new here, so I'm trying to figure out, why are the LLMD's hidden like a secret society? I don't understand what we are "protecting" them or us from. They are drs, they have rules and regulations they have to follow.
I'm confused.
Posts: 250 | From East Coast | Registered: Jan 2013
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
The person who did not reply this time opened the private message from me, so I know he/she returned to the board.
And I still think giving them a link to a state support group is the way to go. That was where I got my help when I started down this road.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Oh so helping someone asking for it is stupid and dangerous?
Oh wait, I know...it's all a conspiracy and they are tracking us?
The funny thing is that you don't get? THEY DON'T CARE! NOT ABOUT PAIN OR LOSS OR DOCTORS TREATING unless the docs put it out there.
If you don't want to offer help, then DON'T. Just read. Sorry to be so aggressive but come on...if one person asks for help and you decide they are fake or not worthy.....who is in the wrong?
Geeze.......I fear nothing anymore after 17 years w/TBD.
Posts: 867 | From PA | Registered: Jan 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- jjourneys,
see the documentary "Under Our Skin" as it explains this situation.
Many LLMDs have been targeted by state medical associations causing them tremendsous turmoil. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I will say.....my doc has tried everything suggested on this board and learned from me. She is NOT afraid of trying to help. AND SHE DOESN'T CARE IF HER NAME IS MENTIONED!
But guess what? We're both frustrated at the lack of results for IV/pills/diet/herbs. I can see in her eyes it hurts her to be so ineffective. But we continue.
She actually sent her top office person to the last lyme disease meeting in DC....and said..."they learned NOTHING".
So conspiracy is stupid.
BOTTOM LINE? Docs are not miracle workers. Insurance companies pay the least they can. Lawyers will take you for all you have.
In the end, we are...sick and just looking for someone, somewhere to say, "I know how you feel. I tried this and it helped. ETC.
Just the fact that you are spying on someone who asked for help and never responded again? Heck, maybe they read it and moved to another post.
GAH...I'm so tired and hurting. I don't even have enough energy to say more.
But to friends here......please don't stop helping when you can....
Posts: 867 | From PA | Registered: Jan 2006
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I did go to one of the top, and I mean very top lyme specialist in the country. My GP said this doc was brilliant and amazing, as she shared my info back and forth.
Do you know what ILADS (brainworm on spelling?) lyme specialist doc told me and my GP? After tons of bloodwork done.....I hit the motherload of TBD....positive for everything. I was told to move out of my home, get rid of my animals, don't feed birds, move to an inner city highrise, etc...
Yeah, really. Even my GP said, "I'll try to help you at least feel better if I can".
I'm out of money and just decided to help when I can to tell someone, tomorrow might be better...... it's a journey and I live one day at time, hoping someone else's day is better.
It's all I wish for us.
Posts: 867 | From PA | Registered: Jan 2006
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i didnt read all of above...but i do agree with map, faithful and lymetoo...
it is impossible to really know...but i have had many intractions over the years and a huge number of ppl were really greatful and got back to me...sometimes years later
i am often foggy...but i have found when talking or even emailing someone it really doesnt take long for a red flag to go up...we are a unique breed here...going thru this experience. and it doesnt matter if who i am talking to is a real newbie-ignorent of all we know...or someone who has already done alot of research and reading...just a simple short talk can make it pretty clear. if they get defensive and dont want to share with you...big red flag
i think we have to keep trying to help and our rules of not naming names or cities are important i guess...but it is true many of these guys are online and at conferences and published and not that hard to find
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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All I know is when I found Lymenet back in 2003 - it helped me to find an LLMD....
I would have been devastated if someone would have decided to not send me names of doctors near me...
I was near the end of my rope.
ArtnSoul
Posts: 416 | From Southeastern PA | Registered: Sep 2003
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
If you had lost multiple doctors to the persecution, you would understand this viewpoint. Anyone who mistook my comments as refusing to help did not read them correctly.
And I think it is uncalled for to be so critical of my post. This is the kind of thing that drives patients away from forums. Maybe you don't care about current patients, just new ones, or ones that say they are new.
It really ought to be the rule that doctors must OK having their names passed on in internet forums to strangers. I wonder how many would want this done. Why don't you find out?
Posts: 2888 | From USA | Registered: Mar 2004
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posted
You are right, kayak... it only takes a bit of conversation to figure out who is real. (usually)
Healthywealthy... you CAN GET WELL .. don't settle for "feeling better."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
I also don't totally understand the secrecy either. The person treating me has a web site and another LLMD I know has a Facebook page and webinars. At the end of every webinar he tells us to share his site with others.
As far as not helping out in the seeking thread I really feel that's being a little ridiculous in your reasoning. If you don"t choose to help that's fine, but I don't really think your going to share anything that would do anyone any harm.
Posts: 1748 | From United States | Registered: Dec 2011
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
poppy,
I've been where you are at this point. I've often wondered if I gave information to someone I shouldn't have.
My desire was overwhelming to protect our most precious LLMDs. I did however over the years realize that the majority of LLMDs are already known.
Anyone so inclined to gain this information will get it one way or another. They can go to a yahoo group, here, or email a support group with a bogus story.
I reflected back when I first started searching for help. I was so very cognitively impaired it took me months to figure out how to join lymenet and then couldn't remember much.
I'm sure I didn't reply back as I should have. My brain didn't function well enough. It's still not back completely.
I know you still want to help but want to be more cautious. Just knowing my own situation, I wouldn't have been able to go to another place for help if redirected to do so.
I applaud you for wanting to protect our LLMDs and at the same time wanting to help others. This is just my experience. I would have been devastated if no one gave me the info here after it took me so long just to figure out how to get here, register, and post.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Well Pocono, that was certainly a more reasonable response than healthywealthywise, who is not wise if he/she blasts other lyme patients in this way. HWW. take out your frustration in less damaging ways please. Don't direct it against other sick people. And your comment about spying on people made no sense at all. Perhaps you should lay off posting for a while.
And I notice no one responded to the question of whether these doctors would want their names given to strangers on an internet forum.
Posts: 2888 | From USA | Registered: Mar 2004
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
poppy: these Drs, who have waiting lists 1/2 a year long, would have few patients if it wasn't for word of mouth.
I got my first LLMD through the Lyme Disease Association's website. You are allowed 3 searches per 30 day period. All you do is enter your zip code.
Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
poppy, I don't know the answer to the question of whether these doctors would want their names given to strangers. I should say all these doctors.
I have asked all three LLMDs I've seen and all said to give them the contact info..
My first LLMD, told me he doesn't worry about persecution. He's not going to waste his time on that.
The other two gave very similar responses. The only other thing I can add is others' LLMDs "gave permission" to post their names publicly but lymenet rules don't allow that which I think is best as one could say they got permission and maybe didn't.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
If we openly posted recommended LLMDs it starts disagreements. This doctor was worthless, this doctor only does one abx, these doctor didn't cure me, etc etc.
It can get ugly with personal opinions. So keeping their names off the open board is for the best.
I would like to say that in the last couple months, I've had more thank you's from people I sent private messages lists to than in many years combined.
A thank you sure makes one working to help feel appreciation.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i lost a llmd once when one of the patient's husband, who didn't believe in lyme, got all po'd because the llmd was recommending books and supplements.
this guy caused him to have to close his practice and get a slap on the wrist from the medical board.
forward....he now has a practice where he treats only lyme patients but takes no insurance. makes it tough.
he has a large patient base and treats only adults, no children. most of his patients are word of mouth and he doesn't seem to mind. but he says not to mention him on any board.
i'm ok with that.
i do ask people that i recommend him to provide me with feedback. most don't. so it does make me wonder.
and sometimes i'm just too tired to send his information when nobody responds, so i've cut back, but not because i think they're trolls, simply because i'm too tired.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
ditto to: I reflected back when I first started searching for help. I was so very cognitively impaired it took me months to figure out how to join lymenet and then couldn't remember much.
I'm sure I didn't reply back as I should have. My brain didn't function well enough. It's still not back completely.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I may be asking a dumb question...But why are they persecuting the Lyme doctors.
I am reasonably new here and I am looking for a doctor right now. I have read a lot and I requested an Igenex test.
I have received my IGENEX kit and now I am not sure how to get a regular doctor to run the tests for me.
I never got sick until now. I am still functional. I work every day.
I am scared to death that a day will come up that I can't go to work or I will have to miss several days.
Unemployment is raging in my area and we are all easily replaceable.
Unless of course....you are related to the bosses.
I can't imagine a doctor getting in trouble for treating patients for Lyme. How can that be?
Posts: 213 | From Tennessee | Registered: Jan 2013
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Carolann,
You will need go from dr to dr until you find one that will sign off on it. Most GP's won't, that's why we recommend an LLMD or LLND.
Lyme is in the early stages of recognition. Just like any other disease, people will suffer and even die before mainstream medicine comes around.
Dr's don't get in trouble necessarily for treating lyme, they get in trouble for what the law deems "over prescribing antibiotics". Because the parameters for treating it haven't changed since the disease was discovered in the late 70s, early 80s.
They still think 3 to 4 weeks of antibiotics and you are cured. They are obviously wrong.
You may be able to find a dr though who will sign off on an IGENEX test.
BTW, I was in your shoes too. Sick but still able to work, I pushed and pushed until I ended up not being able to walk and bedbound for months. Don't make that mistake. Get this taken care of ASAP.
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