heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
if anyone on this board has encountered problems with dr. s in MD (the dr. who wrote 'the lyme disease solution'), please pm me. my dear friend is having a lot of trouble with him and i'm wondering if there's anyone else out there who is less than satisfied.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
I whole heartedly agree! I realize you asked for PMs but this practice has gotten out of hand in general.
Posts: 7052 | From Colorado | Registered: Mar 2003
| IP: Logged |
posted
I think any of us considering visiting a lyme doctor and paying a ton of money out of pocket to do so, deserve to know the positives and negative aspects of that particular doctors.
If we're posting praise, we also need to post complaints. This is a board to discuss how to get healthy, and for that we need all available information. It serves no patients on this board to only post one sided information.
Posts: 690 | From East coast, USA | Registered: Jun 2006
| IP: Logged |
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Hi Blackstone,
I also agree that information is power. And I agree that you SHOULD do research on any chosen physician before deciding to turn over your healthcare to them.
However, this can be done back channel by the PM system. Before that was in place, we used email to share information. Positive and negative.
It is not my place to tell anyone what to do here, that is the position of LouB, and he does a fine job.
Recently though, the amount of posts detailing physician practices here, on a public forum, has dramatically increased. This concerns me greatly.
I am concerned not only for the physicians in question, but also for Lymenet's legal responsibilities...I have witnessed firsthand the damage these posts can create.
I am only asking that you and others take into consideration the other side of this story.
Posts: 7052 | From Colorado | Registered: Mar 2003
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I agree. PMs work very well for sensitive information.
And, it's imperative to consider the source of all evaluations.
No two patients are alike and others may not have the same things you do. Also, some may not be tops in the self-care department but may not tell you so you may not know partial failure might be due to smoking or other self-destructive behavior.
All in all, we want to be able to hear honest opinions but the PM is much better suited for that and it steers clear of potential libel or defamation of character.
As a former journalistic, I was taught a code: never print anything for public view if it is not 100% accurate and in context AND NOT malicious.
The PM function is wonderful for sharing opinions and having room to question back and forth for clarity. Clarity is harder for public boards.
posted
The sharing of information is crucial. I would suggest that we consider asking for PMs from people who "see Dr. Such-n-Such" so that we can "exchange information about Dr. Such-n-Such" without implying that the informational exchange may be negative.
In most cases, it is extremely easy for anyone who does a little bit of research to figure out which doctor someone is referring to even though the name is not stated.
If we don't state explicitly why we want informational exchange in the public forum then we won't have to worry that the information could be intentionally "misused" by the wrong people.
Posts: 129 | From Virginia | Registered: Feb 2008
| IP: Logged |
posted
I would suggest that when we want to share information about specific doctors we consider posting something like:
"I am interested in sharing information about Dr. Such-n-Such. If you are a patient of Dr. Such-n-Such and are willing to talk with me about your experiences, please PM me."
This way the request for information is made without directly stating that the informational exchange will be negative (or positive, for that matter).
It is very easy to figure out who the doctors are even without stating the name. This way, we protect physicians from any information being potentially misused.
Posts: 129 | From Virginia | Registered: Feb 2008
| IP: Logged |
heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
personally i think this whole 'protecting our LLMDs' thing gets out of hand on this board. however, if everyone is offended by my post i will remove it.
keebler, my friend is the 'healthiest' sick person you will ever meet. she has never smoked, drank, or done drugs a day in her life. she meditates, is extremely spiritual, and actually considers her debilitating illness a gift, an opportunity for learning, self-growth, practicing and living with love, and becoming closer to her divine self. blaming the patient for a doctor's failings, LLMD or not, is NOT okay.
she is incredibly ill right now, her very life hangs in the balance, and the doctor in question is not doing a thing to help her. personally, that makes me angry. this is a woman who is like a sister to me.
posted
oops. didn't think the first one posted. goofy me.
Posts: 129 | From Virginia | Registered: Feb 2008
| IP: Logged |
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
"...if everyone is offended by my post i will remove it."
Obviously, that is your decision. I just wanted to say that I hope your friend improves soon.
Posts: 7052 | From Colorado | Registered: Mar 2003
| IP: Logged |
I for one am not offended by your request. It is obvious that you are very concerned for your friend and are doing whatever you can to help her.
I agree with Blackstone..."we need all available information" regarding any doctor we are seeing or contemplating seeing so that we can make educated decisions about our health care. This is not a quickie treatment we are seeking...many of us will be treating our lyme for years....too much time and too much money involved for uninformed choices.
Hokie offered the perfect solution...to phrase our query as "an exchange of information" regarding a particular MD. No one would be aware of whether we have had a negative or positive experience, except in a PM.
Heiwalove, a friend of mine was successfully treated by Dr. S.---I'll PM you the details.
Posts: 345 | From East Coast | Registered: Apr 2008
| IP: Logged |
posted
I see Dr S-doing much better-almost "there". I had a CDC neg lyme, but a babs titer of 1:640
Posts: 561 | From eastcoast | Registered: Aug 2006
| IP: Logged |
Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
Personally, I think the post was OK too. But I do understand the other take on it as well. I'm not sure how many would've responded if the line was just "looking for info" or, more importantly, how relevant those responses would have been to her friend; she specifically wanted to hear about "SIMILAR to her".
Time and again, I find a lot of refuge and comfort here when I discover others have had the SAME as/does the SAME as/experiences the SAME as me... It lessons my fear and opens dialogue.
I have no idea as to how we can keep our LLMD's "safe" yet discuss their traits, good or bad. It's very tricky! That chronic lyme is such a medical "conroversy" is so insane.
That we have inaccurate testing that most of the medical establishment sees as gold ruffles me up but good!
And that the whole circus puts us in a place where we are forced to be careful about exposing ourselves and those knowledgable enough to help save our lives gets me full-on angry.
If I could kick the CDC, IDSA, and the like right where it counts... in their BRAINS!
OK, no more soapbox
Hei, I'll PM ya.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[shake]](graemlins/shake.gif)
That chronic lyme is such a medical "conroversy" is so insane. ![[lick]](graemlins/facelick.gif)
Printer-friendly view of this topic