Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
I am concerned about people who send out lists of doctors who treat Lyme disease and include critical posts by people who have gone to those doctors. Or statements like "Most people don't like this doctor." These lists usually come from people who live far from my state.
Not every patient and doctor mesh and some people can be disappointed in a recommended doctor.
The people who ranted about a doctor may not have approved the use of their post about a doctor.
I usually know patients who are very satisfied with the same doctor in my state and I usually have talked to the doctor and/or the staff and know something about that doctor.
I still send info on more than one doctor I know treat Lyme disease in my state so that people will have options if they do not click with one doc.
Just my policy. (I am posting this on other boards here too,) Ann - OH
littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
The critical posts about a Dr. are important though.
I saw one Dr. who had AMAZING reviews, I had the worst experience of my life. Her staff (minus one girl) was extremely rude and condensending (spell?). I wouldn't go on IV immediately, i wanted to go the oral route first so LLMD dropped me without a word. I had to call the office to see about my refill of Doxy to find this out.
I think all reviews should be inclued, the good, the bad, and the ugly so we can make an informed decision.
I hate when I get a list of Dr.s and there is at least ONE review on there. I hate thinking about wasting a ton of money if they are going to be horrible.
posted
honestly, i don't care if a dr and his or staff is rude or not- or popular- but if they are kind it certainly makes going to appointments much more pleasant-
what's important is regaining health- and if a dr is sincerely trying to help me regain mine, i've no complaints- even if he or she is the rudest person on the planet-
granted, conflicts arise regarding treament- when this happens i try to keep in mind that even drs with years of experience are not experts but practitioners- there is no pie in the sky doc with all the answers- if there were this forum wouldn't exist-
and if i or the doc or both find positive results aren't happening from both of our combined efforts and approaches ... then i guess it's time to move on and try another doc-
we have to be our own advocates- but we have to be responsible to notice when we are over reacting- which is easy to do when sick and frustrated and at wits end- i assume drs become frustrated too ...
Posts: 94 | From shaker heights, ohio | Registered: May 2010
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posted
i feel you littlebit! my LLMD doesn't seem to care if i live or die, but people here worship him. it would actually make me feel better to read some reviews similar to how i feel... i don't think it's allowed to post negative reviews though
Posts: 220 | From Kansas | Registered: Mar 2010
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
It's okay to post negative reviews that include general perceptions. You just can't give too many intricate details, such as, "I said this...then he said that.....then I asked him about X, then he said Y." And no details on drugs/dosages posted publicly.
I think a lot of people don't give negative reviews publicly because they realize that experiences vary based on the person/case.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
My point is as stated:
"These lists[with patient comments and rants included]- usually come from people who live far from my state.
Not every patient and doctor mesh and some people can be disappointed in a recommended doctor.
The people who ranted about a doctor may not have approved the use of their post about a doctor.
I usually know patients who are very satisfied with the same doctor in my state and I usually have talked to the doctor and/or the staff and know something about that doctor.
I still send info on more than one doctor I know treat Lyme disease in my state so that people will have options if they do not click with one doc."
And who knows if those rants might be used against a doctor who is being harrassed by the state med board for treating Lyme patients.
We are careful not to reveal the doctor's name on Lymenet boards, and I agree with that. Sending just the doctor's name address, phone # and website on lists should be encoouraged
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
My list was begun in 2004 when we didn't have a list at Myspace. I took it up as a cause and have since created what I think is probably the most coherent and most updated list. The girl running seeking receives 90% of her data from me.
Honestly, I can't even really call it "Mine" anymore as it's taken on a life of it's own through the efforts of Mamie, Abxnomore, BettyG, Melanie Reber. All who have contributed a great deal of information and or lists they themselves had. I vetted their information as well and researched each and every name to see if the information matched my own. For new names, I would just do open research and sometimes call the doctors directly.
At any rate, the list under my command currently is the one I'm speaking of. The information is vetted carefully. All reviews are approved after discussing the issue before hand with the patient. I usually interview them and or prod them to answer more basic questions to get a well rounded view of their situation.
Ultimately, I can't help how fast or how many reviews come in. So, some doctors may have one or two reviews and both might be negative -- yet, that doctor could be one of the best doctors in the country!
At any rate, my work has always been controversial because I do it based on my own judgment. The criticism is noted, and I make some adjustments if necessary but I've found that the "raw data" has best served patients.
Since I'm in Italy right now, Mamie in Seeking has been taking all my requests and updating the list. I'll be home on August 2nd to answer questions and catch back up.
-------------------- 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.
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
My opinion is WAY too much is hidden already in the Lyme community. I like open opinions, communication and no censoring. If there is one doc/LLMD with 50 negative comments, it's possible someone's out to get them and the data may be unreliable.
I don't care if 1-2 patients think a doc is the best. Give me 100 testimonials saying this. What if a LLMD is planting a 'plug' patient to praise them or even signing on themselves as a patient and giving themself praise? Why couldn't it happen?
People's LIVES are on the line. I listen well to members like TF who tell it like it is. If we want to survive, we have to.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
The idea that the patient somehow has an obligation to protect every doctor from criticism doesn't sit well with me, it never has.
Doctors take an oath to protect patients, not the other way around.
Don't get me wrong, I understand that there is controversy surrounding lyme disease treatment and the doctors who treat it. There's something wrong with the idea that the suffering patients have to protect all the doctors who treat them.
I also understand that I am the one who is suffering, not my doctor. My llmd is doing very well for himself. (and he should be- he's getting me well)
We suffer physically, emotionally, financially... Do we really need to waste time and money seeing doctors that we may leave because we don't mesh well when reviews could help us weed out these people in the first place?
We all know the initial visit can be expensive, tests may need to be repeated, etc.
I'm talking about reviews, not "rants". Honestly, I don't know if ppl really pay too much attention to the rants of others.
These llmds are NOT all created equally.
Posts: 797 | From New York | Registered: Feb 2008
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Good points, everybody!
I am so proud to hear the devotion to Lyme patient advocacy and plain kindness.
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