shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
As suggested by a comment on another thread, here is your chance to sound out about what goes on at your doctor's office that bugs ('scuse the pun) the heck out of you!
If you could design the perfect practice for Lyme patients, what would it be like? (Yeah, yeah, I know, the docs would know what to prescribe so we'd all be cured.)
But really, what could they be doing better? I will try and pass the comments up the chain of command to ILADS. Hey, maybe we can help them help us. And we can help them protect themselves by running their practices better.
I'll start...
Favorite pet peeve #1: LLMD needs an email address so the patients can get questions answered. A NP or PA can answer most questions, and not tie up the phone.
Okay, your turn... Take care, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
The perfect scenario:
While waiting for my appointment they have couchs to lay down on in the waiting room and in the "Little room too"
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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bettyg
Unregistered
posted
My wish list:
1. My MD DOES have an email, but doesn't use it. He may read the 2 problem areas I sent him info on plus anything outstanding I've gotten here from you all.
2. My LLMD still has not returned my 2-10 call on my MAJOR HERX I posted about on 2-9.
3. I gave a specific detailed message to whoever at their office, and they cut me off half way. I said no, I'm giving you the rest of my symptoms so he can be aware of this.
4. Knowing when the Good LLMD will call me back within a 3 hr. span so I can make sure I'm off the internet; have 1 phone line only.
5. A FRIENDLY RN; she is the pits; doesn't smile; doesn't really listen. My last appt., I'm now having panic attacks & claustrophobic. She took me to a hole in the wall I'd never been to before & without a window. I told her I couldn't be in this small space, and also needed a window. NO.
Well, when LLMD showed up, I told him same thing & we went immediately to 1 of the extra MD's offices.
At the moment, that's what ticks me off about going there.
6. If we had someone else in town, I'd go there. He's an OUTSTANDING LISTENER and doesn't rush me, but I'd like results too.
7. I ask for each appt. medical notes, and have to call 2-3 times plus an email to get anything. I want EFFICIENCY, and if there are 2 pages for pages 1 & 2 & not an extra phone call.
You shouldn't have asked me this, sorry!
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bettyg
Unregistered
posted
My wish list:
1. My MD DOES have an email, but doesn't use it. He may read the 2 problem areas I sent him info on plus anything outstanding I've gotten here from you all.
2. My LLMD still has not returned my 2-10 call on my MAJOR HERX I posted about on 2-9.
3. I gave a specific detailed message to whoever at their office, and they cut me off half way. I said no, I'm giving you the rest of my symptoms so he can be aware of this.
4. Knowing when the Good LLMD will call me back within a 3 hr. span so I can make sure I'm off the internet; have 1 phone line only.
5. A FRIENDLY RN; she is the pits; doesn't smile; doesn't really listen. My last appt., I'm now having panic attacks & claustrophobic. She took me to a hole in the wall I'd never been to before & without a window. I told her I couldn't be in this small space, and also needed a window. NO.
Well, when LLMD showed up, I told him same thing & we went immediately to 1 of the extra MD's offices.
At the moment, that's what ticks me off about going there.
6. If we had someone else in town, I'd go there. He's an OUTSTANDING LISTENER and doesn't rush me, but I'd like results too.
7. I ask for each appt. medical notes, and have to call 2-3 times plus an email to get anything. I want EFFICIENCY, and if there are 2 pages for pages 1 & 2 & not an extra phone call.
You shouldn't have asked me this, sorry!
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posted
My wish list for my LLMD (who actually I think is a wonderful guy.):
1. A better system for communicating with him and his office. E-mail would be good IF someone reads and responds to them in a timely manner.
2. A bigger waiting room (with couches!)
3. On-site lab.
4. (Hey, I'm dreaming here: an in-patient lyme-literate hospital facility where very sick lymies could go to get treated in an atmosphere that truly meets their needs.)
Posts: 991 | From California | Registered: Feb 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
We've been quite happy with our LLMD.....
Except for having to continue to see him. Had hoped to be well by now.
It's all good though....as long as husband gets better and better, I'm happy.
Posts: 1366 | From Southeast | Registered: Sep 2005
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Sorry, Lymetoo, perhaps this should have gone to the General forum, I did consider it. But I thought it might bring out a lot of symptom problems that people have when they go to see their doc, and thought that might have value on the Medical board.
Such as...
Can the office staff just be a little more sensitive to the fact that we might be tired/brain fogged/hearing impaired/blurry visioned/sensitive/poor? And that might mean that we have to be able to tell them (or bring a companion who can tell them) that we are not up to snuff that day, and could the office staff help us out?
So perhaps the problem is that the LLMD needs to continue to train his office staff (I have seen the good and the bad), and we need to speak up about what help we need. (I think we are used to hiding a lot of things from the outside world.)
Regards, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I wouldnt care if I came in and the whole staff would yell and scream at me as long as the LLMD could say Ill fix this in three months and youll will be cured of lyme and any coinfection.
And it was the truth.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Comfortable couches in waiting room with ambient lighting and muscular, good-looking male masseur on hand.
Kidding, of course. I have no complaints about my LLMD or his staff.
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
DLL has the best suggestion. I second that!
My MD returns all my calls the same day, as do his nurses. He has a blood-draw facility on-site & an ambulatory infusion office. His office is comfortable - Lazy Boy recliners in the infusion area with a TV. My only complaint would be that I have to wait a long time to see him, he is overbooked and usually running behind schedule. I have never asked him for his email address because I fear I might abuse it.
Posts: 1452 | Registered: Feb 2004
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Man, this post makes me realize I am so lucky.
My LLMD's office does have email and they DO read and respond to it. HAH - one time I even noticed they printed out a fish picture I attached (when I was thought I was having a fine weekend fishing, last summer, but was in fact microwaving myself on doxy!) I gulped when I saw it in my file!
They get back to me ASAP - same day or next. They hoard and mail me samples of stuff my cheap insurance won't cover. They actually care about their patients. The front office person is first-name basis, a true sweetheart who goes the extra mile. I'm going to teach her to fly fish this summer.
If the appointment is rushed or interrupted, I try and understand there are many Lyme patients in far worse shape than me. In fact, I see some of them while I'm there.
I have never been charged for emails or faxes or calls, though I have offered to pay.
Let's see. What would I change? I would move their office about 70 miles closer.
I would turn them into my all-purpose GP as well as LLMD office.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
round trip shuttle bus service for those that are weak, numb, losing vision and depend on other people for caregiving and driving.
The crystal ball to figure out where we got bit, and Father Tyme to reverse time so we could avoid the damage. OR
Synthetic, surrogate veins for all of the bloodwork.
Antifrustration shots to deal with all of the people. medical and non, that think this is easily treatible and does not understand what we go through on a daily basis.
Something that would eliminate all of the problems so that we would never have to visit A LLMD again.
Posts: 719 | From Delaware | Registered: Jan 2006
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I think i am one of the lucky ones too.
My LLMD has always taken my calls or called me back if he was with patient. He has calmed me down from some really scary herxs.
His staff is also very good.
But im with iceskater....round trip shuttle service would be great....that way i wouldnt have to listen to my dad whine.
oh and maybe a gyn/urologist on call or on staff to address some of the common areas lyme likes to attack.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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Put together a handout for newbies to get day one (Like Dr. B's) describing lyme disease, coinfections, treatment options, resources (lymenet, local support groups (preferable from his patients), communication instructions, FAQ's.
Maybe get experience lymies in the practice to mentor the newbies for moral support. Develop a list of other specialties ie, psychologists, ob/gyns, who understand lyme disease.
Offer a line of products to help us...non RX like footpads, supplements, epsom salts, acidophilis, books like Polly Murphy's etc..
That's it for now I guess...but a start!
-------------------- We are spiritual beings on a human journey...
posted
# 1 wish- that there was a LLMD in my state.
I love my LLMD when I am at the office, they are all wonderful people. He is just way too busy so that it takes too much time to get a call back with real information. His office always returns the call but often to say they can't answer the questions until they speak to him and that takes awhile.
It would also be nice if it didn't cost so much for the visit and for the medication for those of us whose insurance will not pay for either.
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Alot of us have to travel out of state to get to our LLD'S offices.
I posted ealier that couch's would be a good idea.
But any room where we can lay down and rest would be a good idea. I would even opt for bunk beds. Lets face it, most of us are so tired.
But other than this I am completely happy with my LLD
take care
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
How about one that has a Doctor in it who is still licensed to practice medicine?
I have furniture at home.
Posts: 714 | From San Antonio TX | Registered: Oct 2004
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
Betty,
For only $5.95 a month you can get a program from AOL...without being a subscriber to their service for phone messages while you are on line...we have used it for a longtime...it also has caller ID, and allows you to get off the internet to answer.
Trout
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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That legislators would protect us and our doctors so they aren't forced into early retirement.....IN ANOTHER STATE! My dream of finding that perfect LLMD or NP was taken away from me and lots of other sick people.
Now, many feel that we have no one to turn to and now have to go through that long,tiring and depressing process again.
It's not fair, it's disgusting and it's SO wrong.
I don't care about couches, secretarial staff, returning phone calls- there's no sense on dwelling on the past either.
I just would like a LLMD in my state- one who DOES accept insurance and who is NOT overloaded already.I'd like someone to help me....even a tiny bit as much as mine did- with or without compassion, patience,bed-side manner.
It's so funny how life takes you through all these different roads and your priorities take a 360 degree turn!
Posts: 247 | From san antonio,tx | Registered: Oct 2004
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi All
My fantasy doctors office would have Cool mood lighting and champain fountians---
I would have dancing girls dressed up like nurses --
I think a DJ spinning discs might be better than a band - but maybe live music on weekends-
A open bar is almost manditory-- but there might be a problem with that --Maybe cash bar only-
I Dont know about you guys but my LLMDs parking lot is a little small for my Lemo but the door man is perty nice but his Bling put a ding in my car --
Oh yea I almost forgot-- the bar would have a drink called the Tickmister Jello shots--$3 on draft and with just one drink the Lyme and other bugs-
Get Hammered into the dirt- Never to Return--Ahhhhh
Also I would have a -Back Room - where ALL the doctors that I have seen threw the years that said I was OK are All gathered --
They are In hand cuffs and chains and I get to visit them with a Fully charged cattle prod - Ya Baby --
Im sure I could come up with some more things for the perfect Doctors office -- but I think you get the picture--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hey Jay let me know where this doctor is and sign me up.
Please don't take offense at me. I thought this post was about fantasy's not reality's.
I am not concerned about the sofa's & couch's just my vain attempt at getting some of you to smile.
And yes, for all those who blasted my vain attempt, I do feel just as passionate at the plight of the LLD's and the whole pathedic injustice of how lyme and lyme suffer's are treated as you do.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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I would definitely pay big for an office visit like that...
If I could design the perfect practice for Lyme Patients, it would NOT be called an LLMD's office. It would be a General Practice.
At this general practice when you present with an extreme migraine, tacharydia, decreased temperature, nausea, lack of appetite, weird rash, extreme weight loss or gain in a short period...they would actually run a test for Lyme and Coinfections as part of the routine workup.
Then the blood work would be processed in a mainstream lab that your insurance covers and actually tests accurately for tick borne illness.
There would be no politics chasing your physician, there would be support and understanding from all not just a few health professionals, they would be educated in the mainstream.
This is my dream, well, second only to Jay's
-------------------- �Pride is concerned with who is right. Humility is concerned with what is right.� - Ezre Taft Benson Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
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WildCondor
Unregistered
posted
My wish is to clone my LLMD atleast 1000 times and have him right down the road from my house, and put him up in a nice log home office with a fireplace and full time chef, and bunk beds for all incoming patients. A Lyme Literate Hospital with the Hyperbaric Hotel right next door, and next to that a Lyme spa with hot mineral springs and massage, acupuncture, chiropractic and rolfing...ahh and the antibiotic, mepron shots bar poolside by the hotsprings. I really like the idea of synthetic donor veins to do out IVs for us too. Ahh the dreaming....we have to be grateful for what we have. I think there should be Lyme Airways for all of us travelling from far away to see our LLMDs. hang in there all!
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posted
Add rife machine to the Lyme Hotel and the Green Airways.
Better yet, what is it- an Israelian Kibbutz? - our own community with all of the services we really need. Medical, living, etc. I think somebody else posted a thread about living together.
Don't forget the Gloria Gaynor song for piped in music " I will survive".
I will keep dreamin' about our ideal LLMD office. Hey, I will even get better, get reciprocity on my nursing license and help take care of everyone. That way, you'll have an understanding office staff....
Posts: 719 | From Delaware | Registered: Jan 2006
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
up-
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
It would be close by.....hmm...perhaps I do really need to look into moving.
I would always leave there feeling like things are going to be Ok and we are on the right track and my doc has the same goal I have....to regain my health.
(This is just about how it goes when I see my LLMD)
I do not see my LLMD at his main office so not sure what it looks like.
But, a couch would be in order or recliners.
I would not feel rushed and I would not leave there until all my questions were answered. (This also happens at my current LLMD's office)
He or she would not wear a white coat ( I tend to want to run when I see a white coat after seeing over 35 of them before being dx)
My LLMD does not wear a white coat and I appreciate that about him.
I have no complaints. I just need to be closer or at least be able to see my LLMD more.
Complaints I have is due to lack of resources like a car, getting the supplements, detox and meds I need and food prep.
It could be worse though and it could be better.
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