We are not supposed to post specific treatment plans with details that identify the treating doctor There are several reasons for this, some of which involve liability.
As each patient's protocol may vary from another patient being treated by the same doctor, one patient may follow what the other was told but, thereby, putting them at risk.
Also, to protect the LLMDs from the judgment of others who do not have all the details, it's best that patients' treatment outlines not be on a world-wide forum.
As for intelligent and cautious patients comparing notes so as to learn more or better understand methods, etc. . . .privately, the PM is a great way to do that.
It's just the public view that LymeNet asks not to be used for specifics other than those posted in published or web age links that we often refer to here.
All that said, it is important (and t works well) for some basic dosage details -- without specifics about the treating doctor. That way, if someone is having a problem, those replying have some sort of guideline to be check the dosage within the recommended ranges.
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Posted by seibertneurolyme (Member # 6416) on :
Lou B posted a sticky at the top of medical saying not to discuss treatment specifics.
Personally I will continue posting doseages of meds as that was not specifically against the rules the way I read them.
I think medication doses are something we need to talk about especially considering that half the problem with the IDSA is that their doses are too low to effect a cure or remission.
Many of us have learned the hard way that either too low a dose or too short a period of treatment results in needless pain and suffering.
Bea Seibert
Posted by seekhelp (Member # 15067) on :
The tangled web never ends. Can't discuss docs, can't discuss dosages, meds, treatment, etc. As I have said many times, don't you think the 'powers that be' know everything about these LLMDs already? We give NEW POSTERS LLMD contact info, treatment info, etc. w/o any significant screening. IF I was a spy, I could get anything I want in literally 1 day here. I'm not of course, but we need to realize this.
Posted by charlie (Member # 25) on :
...I think if you don't tie the dosing to a specific LLMD it's OK.
We're all familiar with the controversy about 200 Mg/day of (IMO worthless) doxy vs 300-400 mg/day of the same (IMO worthless) stuff.
most dosing of biaxin ect is mainstream...we just shouldn't publicize an LLMDs treatment protocol unless he calls it the 'Dr X' protocol publicly.
My take on it anyway...
Charlie
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by charlie: [QB] ...I think if you don't tie the dosing to a specific LLMD it's OK.
Then nothing's changed. I take it as a reminder.
Betty told someone in Seeking to edit out dosages, and I wondered what was going on.
Thanks, wise sages!
Posted by bettyg (Member # 6147) on :
copying lou b's entire post here for you to read tutu/others....
Do NOT post doctor names, treatment specifics or detailed discussion
Lou B Administrator Member # 64 posted 08-05-2009 01:59 PM
[hi] LymeNet Users,
The LymeNet Terms & Conditions contain the following:
"You agree not to post the last name, or the first name, of any person that treats Lyme disease.
Instead, please use the first initial of the last name only, with the state, but not city.
For example, Dr. G. in WV. This person's contact information should not be displayed on LymeNet.
However, you may PM or email this information. This is to protect those that treat Lyme and the Lyme community."
I also strongly suggest you not posts the specifics of your treatment protocol or the detailed discussion / dialog that took place between you and your doctor during your office visit.
Current HIPPA laws prohibit the doctor from discussing your care with anyone but you without your written permission.
I suggest you respect the doctor - patient relationship by discussing any issues or concerns directly with the doctor and not posting them on an Internet BB.
A little reinforcement.
The following is part of an email exchange I had with Pat Smith, President of LDA:
"Lou, at the moment I know of a half dozen or more of docs under scrutiny. A few of the docs have websites and go out there, but most don't. The major websites do not post names.
I do not use names when I speak about docs, we do not use them on materials in testimony and try to train patients not to use them.
I used to think people were a bit out there when they said websites were monitored. We know from certain legal cases that indeed, that has happened.
People speak about treatment on the net.
Not good to have someone say Dr XXXX gave me 1G XXXX drug 2x day.
I actually have become more conservative as I have seen documents and heard political chatter all over and I think we keep docs and specifics of treatment as off the net as possible."
Got the message? [tsk]
Thanks and take care,
[ 05-12-2009, 09:25 PM: Message edited by: Lou B ]
Posted by wtl (Member # 19883) on :
The way I see it is not that much if the doctor's name appears.
I think the issue is the authorization of publicizing their names and protocols.
My regular doctor doesn't like me to put his name online and discuss his methods of treatment. Why should any LLMD?
But I do not buy the notion that we should keep everything secret like we are illegal alients. I think that's a misintepretation of the intent.
Posted by randibear (Member # 11290) on :
ugh, i'm CONFUSED.....
does this mean i can't say i'm taking 500 mg of baixin per day?
Posted by Meg (Member # 22) on :
Not good to have someone say Dr XXXX gave me 1G XXXX drug 2x day.
I believe you shouldn't associate a Dr with a certain protocol, but it should be appropriate to relate what drugs you are on and at what dosages.
This has been done here for a very long time.
It's useful for us to know we're receiving an adequate dosage of the appropriate drug for lyme and every co-infection.
Many a patient has decided to discuss treatment changes with their LLMDs because of the conversations here.
Lou's post above has the date of August, 2009-?
Posted by Jasmin (Member # 19959) on :
Well...I had a question about the dose of doxy I was given...but I didn't put the dosage because I didn't want to break the rules. So, can I go and put the dosage up now? I didn't mention the doctor.
It's under diflucan and doxy...does this affect the doxy dose?
Posted by bettyg (Member # 6147) on :
quote:Originally posted by Meg:
Not good to have someone say Dr XXXX gave me 1G XXXX drug 2x day.
I believe you shouldn't associate a Dr with a certain protocol, but it should be appropriate to relate what drugs you are on and at what dosages.
This has been done here for a very long time.
It's useful for us to know we're receiving an adequate dosage of the appropriate drug for lyme and every co-infection.
Many a patient has decided to discuss treatment changes with their LLMDs because of the conversations here.
Lou's post above has the date of August, 2009-?
meg,
actually it's 5-8-09; i have my posts/replies set up by DAY/MONTH/YR. so i copied from MY system....sorry for the wrong impression.....posted last friday, 6 days ago...
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Jasmin: [QB] Well...I had a question about the dose of doxy I was given...but I didn't put the dosage because I didn't want to break the rules. So, can I go and put the dosage up now? I didn't mention the doctor.
I don't see why not.
Posted by Jasmin (Member # 19959) on :
Well, as an Honored Contributor... I will take that as permission. Posted by Lymetoo (Member # 743) on :
WEll... but ... it's my interpretation of the rules!
I see nothing wrong with us saying we recommend taking 400mg a day of doxy... as we always have.
That is similar to what someone posted in Seeking. They just posted what they were taking and they were fussed at.
![[Smile]](smile.gif)
Can't discuss docs, can't discuss dosages, meds, treatment, etc. As I have said many times, don't you think the 'powers that be' know everything about these LLMDs already? We give NEW POSTERS LLMD contact info, treatment info, etc. w/o any significant screening. IF I was a spy, I could get anything I want in literally 1 day here. I'm not of course, but we need to realize this.