Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
As many of you may know, I primarily help answer posts in "seeking a doctor". When I respond to a post, I try to give the poster as much information as possible.
In addition to doctor's names, I provide them with local support groups, LLMD referral sites, lots of informational sites regarding this illness, such as Dr. Burrascano's guidelines and the link for ILADS; and most importantly a link to explain the medical controversy while trying to explain and guide them thru the in's and out's of navigating this illness.
I have noticed of late that many members have gone over to "seeking" and have answered posts and I can only assume that they are sharing their personal experience with doctors they have had experience with in their state or region.
I would like to encourage everyone who has time to take a look in "seeking" when you can, as it is very important for posters to hear from patients who are actually patients of the doctors who are on the lists we provide.
I want to thank those of you who have already done so and want to encourage all of you to do so, if and when you are able.
I'm sure we all remember what a difficult process it was for us to find the LLMD who has helped us the most. Sharing info about your LLMD with new posters in "seeking" would surely be a wonderfully welcoming experience and extremely helpful, too.
BTW, if any of you have an LLMD that you "love" and who has or is really helping you, please send me a PM with the contact information and a brief "Patient Comment" which will remain anonymous but will be an greatly appreciated addition to our LLMD list.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Good for you! Thanks for staying on top of the situation!!!
And while we need assistance in the Seeking category... we could also use it from folks to help those with questions here.
It is nice for people to read and receive information and help themselves... but if you read and have a minute... why not respond too? I am sure folks looking for help would appreciate it.
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
I have been doing this some. I Do know how hard it was to find people who treat lyme and I think helping others with that is a HUGE part of helping them...
I am concerned though with the fact there are different lists for the same forum...
Does that make sense? Maybe those who have lists can share and come up with one MASTER?
Just a suggestion..
Otherwise they have to get a few lists and sometimes they might not realize there are other lists and miss out on info that is under one or another...
I stumbled upon that a couple times now and told people to ask again ..
Maybe the people who posses the lists can post there names as the GO to PEOPLE an they can ask all of them at once and get all the lists at the same time...
It could make a big difference ... to the new person looking..
Just one name could be the key to their health..
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
Though one list sounds like a great idea, it is the members who share the list, not the site, so they are bound to vary from member to member.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
SoSublyme,
The issue you raise is creepy yet important. Honestly, I do not know what can be done about this but if you know the names of the members who
are sending these PM's to "newcomers" in "seeking", perhaps, you can bring it up with one of the moderators to make them aware of what is taking place.
This also ties into having all members helping out and about not having a master list, which in all honestly may sound terrific but probably would be impossible to put together. It would be a monumental task.
When someone posts in "seeking" everyone gets the list I use and based on the patient comments anyone who would select the doctor in question would really be doing so at their own risk.
Also by having different lists, patients get different perspectives and by having members who see doctors in their state or region contact them, they get yet again another first hand personal perspective.
So, I still feel the best approach is for everyone to take a look in "seeking" when they are logged on and if you see a post where you can personally be of help, PM the poster directly and share your knowledge and experience with a particular LLMD with them.
Also, keep in mind that choosing any doctor requires research and a well thought out approach. Anyone who selects one based on one or two recommendations that seem to be foisted upon them, takes that responsibility on themselves. It is unfortunate that what you explained is taking place but as always in this world it is "buyers beware".
That is why I try to send as much information, as possible, to any one requesting an LLMD and try to impress upon them that they must read what I provide them with and research well, before making a decision.
We can only provide resources, the rest is up to them.
I'm editing this post to ask that we stay on the original topic and not have this post go in a totally different direction.
And that is asking all of our members to take a look in "seeking a doctor" when they can and offer their help, if they find a post that allows them to do so.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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"I would like to encourage everyone who has time to take a look in "seeking" when you can, as it is very important for posters to hear from patients who are actually patients of the doctors who are on the lists we provide."
That is SOOOOO helpful and important!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Not to get off-topic, but there's not a lot we can do about PM's. People are free to turn off the feature, but we have no control over what is sent. We also cannot read the PM's that are sent from one member to another.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
People who answer these doctor requests might want to try to screen out trolls before they supply too much info. Anyone can collect info here, and we don't know how it will be used.
Be cautious.
I wouldn't answer very many personal questions from a newby without doublechecking their authenticity, or trying to.
Posts: 8430 | From Not available | Registered: Oct 2000
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Lou, I agree with you. It goes without saying that one must operate that way in all aspects of one's life, especially on the Internet.
Yes, we do have trolls on the site but not that many. There always have been and always will be, just as there are dangerous people in our neighborhoods who we may never suspect to be.
That is why I stress the importance of educating oneself and making a well thought out informed decision. That should entail getting several like responses from others backed up by as much research as one can obtain before making a decision, including a very thorough interview with the LLMD or someone in charge of the office regarding treatment policies, treatment protocols, how long they have been treating Lyme Disease patients, does the doctor use both IV and orals, do they test for co-infections, etc.
Still for the most part the vast majority of our members are sincere and here to help. But, we must all be cautious in our actions and our decisions.
So, once again I'll ask all members to become active and take a look in "seeking" and see where you can be of help to others in need.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Moving this up to the top for the early crowd.
We need all of our members to help and reach out, if they are able.
Those in "seeking a doctor" need to hear first- hand experiences from those of us who can offer them.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: Though one list sounds like a great idea, it is the members who share the list, not the site, so they are bound to vary from member to member. [Smile]
This is something that people need to understand clearly. Not everyone who has a list works for Lymenet specifically.
There is a group that shares data for list holders. Everyone on that list -- from what I've been told -- volunteers for Lymenet's seeking doctor's section.
I do "not" work for Lymenet. My list is entirely separate, even though I have shared it in it's entirety with Roz (who started this post)
I just sent out a commentary to the list holders of Lymenet to inform them of my stance since others have begun to question my integrity (and the list I keep) publicly through blogs and other sources. I will post that here, and will then not discuss the issue again.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I'd like to clarify to the moderators and other members who lead these projects what my place is in this complex community. Once moderators are aware, implied or other negative criticism regarding what I do will be put to rest to ensure patients are not persuaded by a constant barrage of incorrect information. Most of the negative criticism has been implied, or indirect.
Roz has a copy of my list and is the vocal "PR" of pretty much whatever I do -- at least that's how I perceive her, so she can answer your questions and give you her material as she did here and in the future.
All I can say -- regardless of negative criticism -- is patients are extremely happy with the material I give from the list I have organized. They have consistently written back to alert me of any information they've attained from the offices they called or the care provider they see. If some information was incorrect, they help me fix it.
My work originally began with one name back in 2004. Dr. D from Massachusetts was the only one, since he was who I was seeing. I volunteered for the MySpace Lyme Disease group and had the blessing of the group leader when I presented the idea of creating a list, and so I did. Since we had no access in 2004 to a list, I reinvented the wheel and that's why my list was so different from the traditional method Betty used for Lymenet. Betty made it clear that her list was an entirely separate entity which was approved by Lou, while mine was not. For that reason alone, Betty and I never had conflicts, though we shared information. It was a "Take what you like and leave the rest" mentality. It worked well for us regardless of any disagreements we might have privately held, and I hope it will work well for all of you who share information with me.
I still continue to work for the MySpace group. I don't volunteer in seeking doctors presently, therefore I have no obligations to meet anyone's criteria except the patient's private request.
As far as my method:
I make sure to note whether a provider is Lyme Literate and thus treats the disease directly, or is Lyme Friendly, and thus doesn't treat but does support the patient's diagnosis and works with Lyme specialists to help provide underlying care. I also try to note whenever possible if the care providers treat co-infections, and other associated aspects of the illness (Mold, metals, viruses etc).
I also list therapists, psychologists and other providers to provide supportive care, but only as long as they are compassionate and willing to help a Lyme patient by understanding the complication it may hold in respect to the patient's psychological/psychiatric issues. Patients often need support just because they are chronically ill. If the provider specializes in chronic illness and I've received reports from patients with Lyme and associated infections that they had a good experience with the therapist, then I find they are most useful to new patients too.
I also include names of researchers who patients can call for the latest information. Researchers generally neither treat or interact with patients in an office setting -- but if I know they study Chronic Lyme and are publishing data supporting persistence or giving lectures, they're worthy of including.
At the bottom of my main list, I have recorded all the support groups that I knew of at the time I began the research. I believe patients who receive lists should also be given the local support groups for whichever state they request. I will begin this very shortly. Updating the support groups is a tedious task, so I haven't attempted it yet. Roz has already led the charge in doing this and providing even more refined methods of updating the list.
If my work is offensive or otherwise disagreeable, I will still continue to do it privately as I have. If people wish to receive data, I'm happy to share. I suggest people research and confirm the data I give if they are on the fence regarding my methods or my credibility. Beyond that, I find great pleasure in helping people make informed decisions. Patients are also given a document with each list that indicates how to gather even more information that I provide. They also are given a list of questions to ask the doctor -- which the moderator of seeking doctors apparently qualified as a sticky for that group, even though I don't work in there. Patients are also instructed on how to report back to me with whatever changes are needed based on the material I provided. My material is never complete ... ever. In-fact it's not even my material. 90% of it wasn't created or written by me. It's data taken from different sources. I simply do research and cut/paste, and write brief summaries to clarify facts. The list must always be updated, but it can never be perfect when a patient gets a copy for their request -- and I inform them of this. It is not through calling doctors that I update. That simply isn't possible because when I attempted to do that many doctors were resistant to even talking to me and their office staff often refused to answer questions as well. Such inefficiency is not useful. So patients remain my window. They can ask the questions I can't.
I also usually request the patient give me a brief history of what's happened to them that led them to me. If I know the patient, no history is needed. It's obvious who is telling the truth and who is suspect. Suspected members are directed to the LDA, where they are permitted to access that server to find a very limited number of names, and thus it's no longer my responsibility. The LDA server is available to serve anyone, even sketchy people. The good news is that I have never been contacted by a suspected request privately via my e-mail. I have however been contacted via PM on Lymenet by suspects.
Additionally: I never accept second hand reports for "patient comments." Example: "Hi Michael. My friend told me that his uncle sees Dr. so and so. He says the doctor gives him IV, oral, and is a really nice guy."
My response to them is: "Have the uncle contact me and then I'll consider including his report."
Period, no second hand reports.
Personal Bias?
No matter how negative or how positive a report is, it's not my responsibility to choose what to leave in or out. I can only do my best to authenticate it, and then it's up to patients to decide. I will not allow my personal bias of likes or dislikes to influence the material. People have asked me to remove various physicians. I have not. In-fact if I removed doctors based on patients requesting I should, many of the best physicians would be removed, including Dr. H, Dr. Jones, and Dr. J, etc. There will always be one angry patient out there, even for the very best doctors. Only if a patient asks my opinion about a doctor based on what I know, will I share, otherwise I do not influence or suggest who a patient sees. And if I do share, I do so with tact and professional conduct. My own personal doctor is a different story. I openly express my likes and dislikes if someone asks my opinion about his office, otherwise I direct them to the list.
Hope this helps. Anyone who has further questions about my methods (for the purpose of potentially using it for Lymenet) can direct all further questions to Roz. She abides by the same sentiments I hold with her list, which is nearly identical to mine. I consider her a massive asset as a result and am very thankful for all her help. If people are offended or find my information or method unacceptable, I'm more than happy to accept constructive criticism.
I am grateful to those of you who work to help patients both privately, on other forums, and of course in seeking doctors.
Sincerely, MB
With all this said, what Six said is exactly what I believe has been most useful.
"Though one list sounds like a great idea, it is the members who share the list, not the site, so they are bound to vary from member to member. [Smile]"
-------------------- 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.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
ABX, the stage is all yours! I think you speak logically and clearly for most of us. You do a fine job, and there is nothing left for me to say.
-------------------- 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
There are no official or unofficial lists or list holders at LymeNet. No one works or volunteers 'for' LymeNet in Seeking a Doctor Section or any section of LymeNet. All information exchanged between members is the sole responsibility of that member. The information is not approved nor endorsed by LymeNet. LymeNet appreciates members that contribute their time assisting other members.
Posts: 127 | From USA | Registered: Oct 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- As Anna Lee points out, helping in "Seeking Doctors" is for everyone. It's no one person's job and no one is in charge. However, two people who contributed greatly in recent years should be acknowledged.
This would be an excellent time to THANK METALLIC BLUE and BETTYG for their years of dedication and hard work. They each spent hours helping many people and, together with everyone else who quietly contributed there, their work gave a new poster a good start.
THANK YOU: METALLLIC BLUE and BETTYG.
THANK YOU, VERY MUCH for years of dedication with your many long hours and hard work to help so many others.
THANKS to EVERYONE who gives their all, even if quietly and just here and there - so that others' lives can be better. One reply can help change someone's life. So, regardless of how little or how often, your contribution is greatly appreciated.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Thanks Keeb, but I was definitely one of the "quiet" ones. My effort was usually vicarious. I think BettyG really deserves the majority of thanks for so many years.
As far as I'm concerned, I look to ABX as the authority now -- even though we don't have official leaders and such. With her clear head, she's more effective than I could ever hope to be. I'm still sick with Lyme, so it's harder for me. She's stronger and will be much more helpful.
Ok, I'm now done kissing ABX and Betty's asses, carry on.
-------------------- 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.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: There are no official or unofficial lists or list holders at LymeNet. No one works or volunteers 'for' LymeNet in Seeking a Doctor Section or any section of LymeNet. All information exchanged between members is the sole responsibility of that member. The information is not approved nor endorsed by LymeNet. LymeNet appreciates members that contribute their time assisting other members.
And there you have it folks. No more negative criticism. Lymenet has spoken! If anyone has issue, consult this post or a moderator. Drama can now exit stage left (i'm going right).
Thanks Anna. I am very very thankful.
-------------------- 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
Thank you Metallic Blue. Your work and the work of all members that contribute is appreciated.
Posts: 127 | From USA | Registered: Oct 2009
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posted
Thanks, Abx, for your response and for all the help that you and other members give to all the people seeking doctors.
You have helped so many (including me!)
Posts: 345 | From East Coast | Registered: Apr 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Keeb! You're back! That's great! Sorry to hear you deleted all of your informative posts though. They were quite good!
Hopefully you saved them so you can continue to educate!
And a big THANK YOU to everyone who takes time to help others- both here and in their local communities. You all are a blessing.
Each one, reach one!
Oh.. and NoMo ... I did what you wanted and answered someone in the Seeking section tonight... and had NO clue what I was doing and no answers for them. HA!
But.... I said someone would be by later who was smarter than me to help them soon.
And don't EVERYONE go running over there just cause you are smarter than me. Don't want to scare the new member away now, do ya?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Up for the weekend crowd!
Please take a moment to read the "original post".
I hope more members will offer their experience and knowledge in "seeking" when you are able. Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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