Even doctors do not like it when *other doctors* "challenge" their strong held beliefs.
A good example of that is the difficulty one doctor experienced for YEARS trying to convince other doctors throughout the world that H.Pylori, not stress, causes ulcers. The other doctors held strong to their belief - stress causes ulcers.
Doctors don't like other doctors telling them they are wrong. It is no wonder patients keep their mouths shut.
Doctors who respond to medical challenges by dismissing you as a patient, or who those who state that lyme is incurable (for any reason) really make me angry.
This is and always has been a quest...a journey to find a cure...not simply a way to alleviate the symptoms...a CURE.
Keep Hope Alive.
NEVER EVER SAY (OR BELIEVE) LYME CURE IS IMPOSSIBLE.
Romanian doctors CURED lyme by restoring very deficient Mg levels AND giving IV abx. (Lyme Disease with Magnesium Deficiency - abstract title)
Dr. Valletta (Italy) CURED invasive bowel cancer, RA, and some other diseases using Mg Pyrophosphate and sub(lingual) B6. His patent is titled: "Magnesium for Autoimmune"
Impossible? NOPE. Not if you understand HOW this is possible.
We have NOT thrown up our hands and simply said to those suffering with other infections, "Sorry, your HIV infection is incurable" or "Sorry, the malaria you have is incurable". We treat, we continue to find a cure.
Neither should we EVER say lyme is incurable.
Breast cancer CAN be cured too...look very closely at Tamoxifen AND (together with) EPA. Google: Tamoxifen EPA
Diabetics...researchers have JUST figured out how to regrow pancreatic beta cells (insulin producing cells! The protein is in test mode in Canada and at Mayo (up north).
Cures are possible!!!
And IMO...the doctors who openly say in print - book/direct internet link, "Lyme cure is impossible" should have his/her full name allowed on this board.
Not edited out of someone's post.
Posted by sparkle7 (Member # 10397) on :
I thought it was to protect the doctors who treat Lyme from potential harassment - since, so much of this treatment can be against the accepted guidelines.
I can see how the whole thing can become a huge "mess"... I would say it more strongly but I'm being polite.
If a doctor or scientist publishes an article or writes a book - I did think it was OK to post the person's name. The person in question here specifically asked to have any mention of his name not allowed here - as I have read posted here.
I'm not sure of the legal ramifications. It does seem bizarre that we can't discuss his methods or books or anything else about him here. I thought that freedom of speech was a Constitutional right of being a US citizen...?
-----
FYI - Wikipedia -
Freedom of speech in the United States is protected by the First Amendment to the United States Constitution and by many state constitutions and state and federal laws.
Criticism of the government and advocacy of unpopular ideas that people may find distasteful or against public policy, such as racism, sexism, and other hate speech are generally permitted.
There are exceptions to these general protection, including the Miller test for obscenity, child pornography laws, speech that incites imminent danger, and regulation of commercial speech such as advertising.
Within these limited areas, other limitations on free speech balance rights to free speech and other rights, such as property rights for authors and inventors (copyright), interests in "fair" political campaigns (Campaign finance laws), protection from imminent or potential violence against particular persons (restrictions on fighting words), or the use of untruths to harm others (slander).
Distinctions are often made between speech and other acts which may have symbolic significance.
-----
I hope I'm not offending anyone, the moderators, or the owners of this message board. I'm not trying to be provocative.
I enjoy using this forum for my thoughts & ideas. I also enjoy & learn from others thoughts, ideas, & experiences - even if I don't agree with them. It is important to discuss the merit of various protocols & concepts so that we can learn, make decisions & ultimately, get well.
This is an important issue. I'm glad you brought this up, Marnie. What is to be done about this? I can't see how one person can ban us from discussing his published works about Lyme & co-infection treatments.
I could see it if we were slandering him - but it seems to be that we have a right to discuss the merits or flaws of his treatment protocols.
Posted by springshowers (Member # 19863) on :
I agree Marnie
And actually think that doctor names should be allowed anywhere anytime..
I think there needs to be some change and less fear and less hiding and also owning your statements or ideas (the doctors too)
And having an open forum to discuss them without limitations..
The only rules in the forums that I think are legit are the ones that ask you to be respectful and post your thoughts and ideas without making it personal and without taking it personally..
as well as no swear words etc.
Posted by peacemama (Member # 17666) on :
My Family Doc/LLMD let her name be said OUTLOUD in a court room, identifying her as a doctor who treats with ILADS guidelines.
She isn't afraid. I wish we could all be out of the Lyme Closet.
But, I also respect the fact that some docs don't want themselves talked about on sites like this. But, has anyone asked them?
I know that I haven't. I think all this fear and hiding makes these disease MORE unaccepted than it already is. Just like the conspiracy theories turn people off to our cause.
We all need to be OUT. No matter what. I'm so sick of pretending that Lyme isn't the elephant in the living room. It is a pandemic. And we need to fight like our lives depend on it.
Posted by sutherngrl (Member # 16270) on :
Peacemama, makes a good point. Its like being all secretive constantly just makes LD even more taboo than it already is. We shouldn't have to keep things swept under the rug. Its a ligitimate illness.
I'm not saying we should use peoples(doctors) names on here, but the way it comes across here is like the mafia or something. Everything is under ground, secretive, with an underlying fear. No one does this stuff with cancer or MS or other illnesses.
I haven't asked my LLMD if he wants his name mentioned. I would think no doctors would really prefer to be openly discussed; but he sure doesn't try to hide out. I mean he has received and sent faxes to my PCP; he has sent me to my local hospital to have a chest x-ray before....from one state to another. He doesn't seem like he is trying to be secretive at all.
In other words he doesn't try to hide the fact that he is treating me for a ligitmate illness.
I too am sick of pretending that lyme is some kind of crazy off the wall illness that can't be talked about. Its really so absurd!
Posted by GiGi (Member # 259) on :
If a doctor publishes and makes his protocols available on the internet to the public, his/her name is out in the open. It's time we stop hiding in the closet and drop the persecution complex.
Posted by sparkle7 (Member # 10397) on :
I have seen that there are doctors who ask patients to sign waivers to not discuss the protocol or about them, or their treatment on open forums.
I think there may be some legal issues surrounding the issue. I don't know what it is in regards to this message board. I would not want to see this board get sued by a doctor.
If the doctor has published book or is open about their methods - I don't see why we have to not post their name. If the discussion is in regards to personal treatment, it may be polite to not post the full name.
It is good to know who the outstanding doctors are & what their treatment approach is. I'm sure they all have fans & people who hate them... but it's helpful for the potential patients or medical consumers to decide if they like the particular doctor's protocol ideology.
Some doctors have been persecuted, though.
Posted by Keebler (Member # 12673) on :
- Published works: Any time any excerpt is used, by copyright law, the author's name MUST accompany that. Same with book, article and lecture titles held forth as reference points. The author must be cited, giving due credit and point of origin. It's the law. -
[ 04-26-2010, 03:33 PM: Message edited by: Keebler ]
Posted by sickpuppy (Member # 23846) on :
I feel like if he/she wrote a book about lyme that's public already so I'll use the name if I'm suggesting the book.
Posted by gwb (Member # 7273) on :
quote:Originally posted by GiGi: If a doctor publishes and makes his protocols available on the internet to the public, his/her name is out in the open. It's time we stop hiding in the closet and drop the persecution complex.
Agree with you 100%!
Gary
Posted by KYForester (Member # 24695) on :
My doc makes a point to put "for Lyme disease" on all my prescriptions. He says it's so the idiots at the pharmacy know that this is a legitimate disease.
Posted by randibear (Member # 11290) on :
i, too, thought if they have already published works, then it's ok to mention names.
mine has me sign such a sheet however, about not publicizing the name.
but what the heck, we all know who we're talking about anyway.
Posted by Lymetoo (Member # 743) on :
I prefer to protect my doctor!!!
Posted by springshowers (Member # 19863) on :
I really see that some of my feelings are shared here by others.
I am sick of the underground secrecy issue. IT makes us look more NON LEGIT>
It needs to change if we want to be taken seriously.
Doctors and patients alike.
I know the risks and I know the politics. But they get to keep us where they want us. Not seen or heard.
And we are allowing it by participating.
And there are even some who are the police dogs. I have gotten harrassed on this board for typing information about doctors using their names and some even general info about them. Not even specific protocols or anything.
Just even posting a link to a conference or something because in the link you can read the doctors names. And it is already public knowledge and can be read???? I do not appreciate the Pressure to be honest..
I have not heard of doctors having patients sign wavers to not talk about them on a forum.
But I like the doctor who puts "lyme disease" on the prescription so that the pharmacist knows its a real disease.
I can not tell you the times i have had the pharmacist call me up and make me explain why I have this and that script and what its for and even when I answer I get that weird look.
I have decided to have them call the doctors office if they feel they need an explanation.
WE got to CHANGE This..
I think that the people who want to challenge doctors are going to do it no matter what we do or how we act but even so it might even be a Lesser degree or chance if they know we will ALL stand up!!
Posted by TerryK (Member # 8552) on :
Yes, we have freedom of speech however this is privately owned forum. If you want to stay, you must obey the rules which by the way, you agreed to when you joined. Same thing when I invite you to my home. I own it, I make the rules. You are a guest, visiting at my invitation. I can tell you to leave if I don't like your behavior, that is my right.
Some LLMD's have had information from internet forums used against them in medical board hearings and legal proceedings. Why make it easier for them to take our doctors away from us?
It is in our best interests to protect our doctors. Besides, they deserve it!! Many are putting their livlihood on the line to treat us.
Terry
Posted by springshowers (Member # 19863) on :
How in the world did the new sticky become a sticky and it feeds into this whole thing.. It says not to use our real names on here?
What?? Are we kidding? Insurance companies search patients names? Online? WHat? And even so More Hiding? WE are going nowhere so fast.
In the hearings there wast an advocate from a certain state talking and they were being questioned about the number of people with lyme in that state such. They were not even able to answer those questions but were trying to make the point of how many are suffering and needing longer term treatment etc. The panel wanted an idea of the numbers and in the end it did not look very good and they did not take that person very seriously because it did not look like as big of an issues as her presentation first came across.
WE have to arm these people will real numbers and stories and cases so that this does not happen.!
" Icon 1 posted 03-23-2010 09:38 PM Profile for Keebler Send New Private Message Edit/Delete Post Reply With Quote - I see so many new posters who seem to be using their real names. Some post a first initial with what seems to be a real last name. Even a first name and last initial can be traced, too.
To do so is extremely dangerous regarding privacy issues. Even if you don't mind the world knowing you have (or may have lyme), insurance companies do search patients' names. Most insurance companies do not want to pay for lyme treatment - at all.
Also, some life insurance companies will not cover someone who has had lyme.
I don't know if one can re-register with another web name. But, if you see this BEFORE you sign up, please use a screen name that no one can figure out. Privacy concerns run deep.
Anyone can search a name and if it's here at LymeNet, it can show up with a web search for years to come. Same with most web sites.
Never post your real name, address, phone, names of family members or even the exact ages of your children on any public site. It's best to not post any particulars about your children as some who read all public sites can be searching for those who are vulnerable. Not everyone who reads this site is someone who wants to help. It is a public site.
All that said, most here are very helpful and here to make the world a better place, keeping your personal safety in mind along the way."
Posted by randibear (Member # 11290) on :
hmmm, reminds me of something. it's sort of related.
how come doctors can pass along bad information to insurance companies, employers, and other doctors?
one doctor caused me to loose my life insurance when he told them i was "suicidal".
sorry, this hit a nerve. we're trying to protect their bloody rears tho (the good ones) but some of them are basically killing us.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by springshowers: [QB] How in the world did the new sticky become a sticky and it feeds into this whole thing.. It says not to use our real names on here?
What?? Are we kidding? Insurance companies search patients names? Online? WHat?
It happens!!!
But worse than that is the weirdos who lurk here... haven't seen any?? Just check "Off Topic" everyday.
Posted by WildCondor (Member # 434) on :
The doctors are already all out in the open, writing books, advertising websites and giving lectures. It should all be out in the open, things were different 12 years ago but not anymore. The rules here are outdated, the whole site needs an overhaul.
Posted by TerryK (Member # 8552) on :
I do not agree that the rules are outdaated. As long as our doctors continue to be called before medical boards and are targeted by the IDSA and others it is our duty to do everything we can to protect them.
Did you know that there are a group of lawyers who advertise on the internet that they specialize in suing lyme literate doctors? You can bet they are looking for disgruntled lyme patients here and on other forums.
Anyone who thinks that they are safe posting their full name on an internet forum, lyme patient or not is wrong. In case you haven't noticed, there are some real whacko's out there not to mention those who want to take advantage for their own gain.
There is a well respected disability group who doesn't even keep archives any longer because of the awful experiences they've had with disability insurance company moles infiltrating their forum and causing problems for posters.
The internet is a wealth of information for insurance companies and predators of all kinds. You can bet they will use it if it's in their best interest to do so. Why wouldn't they??
Terry
Posted by springshowers (Member # 19863) on :
quote: The doctors are already all out in the open, writing books, advertising websites and giving lectures. It should all be out in the open, things were different 12 years ago but not anymore. The rules here are outdated, the whole site needs an overhaul.
I agree
Posted by Hoosiers51 (Member # 15759) on :
It is best to keep things consistent (no name, only initials), because you get crazy people on here that get really mad when their doctor doesn't answer their questions or get back to them soon enough, and they say things that could actually get a doctor in trouble, some of it fabricated, because people tend to be dramatic when they are upset/exhasperated.
Also, it's confusing for new people who don't know who is published and who isn't. Then there's the matter of, what is "out there" and what isn't? I just think it's best to keep it all consistent.
If people see their doctor's name on Lymenet, they might then think it's okay to then use the doctor's name when talking not about publications, but about private things that should NOT be aired in the open, on an open forum.
Just think of the worst case scenario patients, and think that you've gotta protect against those kinda people coming on here and airing their dirty laundry. I know LLMD's have "fired" patients for being overly dramatic about things, while using the doc's name, on Lymenet.
Posted by gwb (Member # 7273) on :
If it wasn't for the lyme forums LLMD's wouldn't get much business. We're the ones that help them get new patients by referring them to other members here. If the doctor wants to remain anonymous fine, but if he/she doesn't care, then why not post it in the open?
Besides that, all anyone has to do, including insurance companies, lawyers, AMA, etc is go to the Lyme Disease Association page and get LLMD names there. It's all out in the open so why does it have to be a big secret here? If you do a google search for LLMD referral it's all out there.
My LLND is more than glad to have his name and clinic posted on the lyme forums, and I believe the majority of LLMD's and LLND's would appreciate having there names posted here in the open. Without us they'd wouldn't have much business.
I think if there's negative comments to be made about the doctors that should not be in the open but sent through pm's. But if it's just giving a referral or talking about their protocols, etc, then why hide it?
Gary
Posted by Hoosiers51 (Member # 15759) on :
It's because if people see names used, they will think they can use their doctor's name. The fact is, some doctors don't mind and some do. And there is no way to prevent people from also using the names of the doctors that don't want to be mentioned in forums.
Posted by sparkle7 (Member # 10397) on :
re: As long as our doctors continue to be called before medical boards and are targeted by the IDSA and others it is our duty to do everything we can to protect them.
---
This can be the case for many illnesses... If a doctor prescribes too many pain medications, treats cancer in a different way than chemotherapy, prescribes medical marijuana...
Also- I've been to a number of doctors who are not worth protecting & were downright damaging to my health.
LLMDs aren't the only doctors who are persecuted. I think the big issue here was that a particular doctor who has a big website & published books about Lyme & co-infections asked to not be discussed at all on this board.
I do want to abide by the rules & not have this doctor sue the message board owners. I just don't know if this is a violation of free speech.
Can a doctor who has published many books on Lyme & co-infections ask this board to ban any mention of his name or work in the Lyme community?
It's funny, I've been on message boards that won't let you use a pseudonym... You can only use your real name if you want to post.
The way things are going - we have very little real privacy left. We are being tracked through our phones, cell phones, credit card bills, receipts, legal documents, surveillance cameras, purchases, brainwave patterns, e-mail, "on star", roving wiretaps, basically anything electronic, satellites, google earth...
If it's a concern - you better stop posting anything on the internet & use cash to pay for everything - while you still can.
Posted by TerryK (Member # 8552) on :
sparkle wrote: I've been on message boards that won't let you use a pseudonym... You can only use your real name if you want to post.
I'd stay away from any discussion groups with that requirement.
I am curious and puzzled by the recent discussions here. Would someone please give me some specific examples and explain how people are being tracked by their "brain wave patterns"?
Posted by Keebler (Member # 12673) on :
- There has not been a knock-down, drag out fight in a while. Looks like discussion of privacy matters is the latest causality. Although the topic of personal privacy matters is not what this thread is about - it's a different subject.
Matters of crime are a legitimate concern and criminals of all types are looking at all kinds of websites to find their victims. It's no joke. No joke at all.
Personal and family privacy safeguards can prevent major hassles, rip-offs through cyberspace or one's house (if posts announce when one is out of town). Of greatest concern: child/teen abductions. It's no joke.
Usually, it's not those we see but those we don't. But predators groom in a variety of ways. Awareness can stop them.
Aside from all that, yes, just as current employers and prospective employers search their employees and applicants for all web activity, insurance companies are denying coverage of lyme. It's very easy to just search a name. If it leads right to this site, medical coverage could have a greater chance at being denied.
But, once a real name is posted (and with other identifying clues), personal criminals searching the web can latch on to information. It's easy to prevent that with use of a creative web name. -
[ 04-27-2010, 03:03 PM: Message edited by: Keebler ]
Posted by keltyl (Member # 14050) on :
I think most of the LLMD's are still being careful in some respect. But I don't think it's being done in a very secretive way. They do still have to watch their backs.
And talking about insurance, mine has been paying for rocephin, supplies, and nursing for 8 mos now. I feel extremely blessed....thank you Lord.
Posted by Tracy9 (Member # 7521) on :
quote:Originally posted by WildCondor: The doctors are already all out in the open, writing books, advertising websites and giving lectures. It should all be out in the open, things were different 12 years ago but not anymore. The rules here are outdated, the whole site needs an overhaul.
Well said! I agree with you one hundred percent, as well as springshowers. Thank you for bringing this up; it has always been a pet peeve of mine.
ANYONE can sign up and go to seeking a doctor and get all the info they want. Anyone can sign up and PM away and get all the info they want. We are fooling ourselves if we think we can hide anything here! We have no clue who we are giving info to on pm's, yet we freely give it, as long as it is by the allegedly protected PM system. Bull!!!
The LLD's are being persecuted by INSURANCE companies who turn them in to the licensing boards. They are being persecuted by their IDSA competitors who turn them into the boards.
I have been at the heart of the Dr J hearings, as a key witness, and believe me, none of the crap thrown his way came in any way, shape, or form from an internet board. They have plenty of BS ammo they get from the IDSA docs, disgruntled divorced parents, insurance companies, etc....these boards are peons and not important enough to lend any credible risk to our LLDs.
Trust me, we dont' have any secrets by hiding their names. Do we honestly think the bad guys don't know who they are? C'mon!!!
[ 04-28-2010, 02:47 AM: Message edited by: Anna Lee ]
Posted by Tracy9 (Member # 7521) on :
Oh, and I did stop posting personal information about myself and my children, but it wasn't for fear of any "outside agencies" or insurance companies or The Devil finding out and bringing some wrath on me.
[ 04-28-2010, 02:48 AM: Message edited by: Anna Lee ]
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by TerryK: The internet is a wealth of information for insurance companies and predators of all kinds. You can bet they will use it if it's in their best interest to do so. Why wouldn't they??
ditto... and to everything else you said, terry!
Posted by keltyl (Member # 14050) on :
I go to well known LD and decided to look him up on the internet. On one of the sites it states he is well known for his pioneering work with Lyme disease, and has treated over 3000 patients the last 14 yrs. I was quite surprised to see that.
Posted by Hoosiers51 (Member # 15759) on :
The most important thing about the doctor's names is not that the NAME ITSELF stays hidden....it is all the things people type up along with the name. But it is easier to have them omit the doctor's name than anything else (like all the details).
People are too focused on saying, "oh, but the name is already out there." Yes, it is, and anyone could find it. That isn't really the point. The point is, does your doctor want all these other details about him online? Some don't. That is why Lymenet also asks that you don't reveal exact details of your protocol. Some doctors don't want those details out there, because of the controversy. There are other things that shouldn't be spilled online either, due to how controversial the treatment is. I doubt many doctors would want their name attached to a post in which a patient describes going into sepsis from a PICC, etc.
Does anyone understand the point? That the reason we leave out names is not about the name itself? (i.e., the name itself is not the private info, since it is available elsewhere). It's about protecting doctors, yes...but we aren't literally protecting the name. It's the practices that are controversial...and of course they are only controversial because of poorly written guidelines.
Posted by MariaA (Member # 9128) on :
as far as the 'free speech ' question that Sparkle asked, there is no free speech requirement on forums- they are not public space. A forum owner can set the rules however they want to.
Posted by Hoosiers51 (Member # 15759) on :
The whole point of free speech in America is that if you don't like the way Lymenet runs, you are free to go start your own site, with it's own rules, and no one can stop you or arrest you for that.
Posted by Tracy9 (Member # 7521) on :
I agree with Hoosiers; it's the details of the treatment associated with the name of the doctor that reveal too much about a doctor's practices, particularly when referring to things gone wrong in your treatment.
However I still don't think mentioning the name of a doctor is an issue, but most definitely NOT in the context of treatment details.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Tracy9: [QB] I agree with Hoosiers; it's the details of the treatment associated with the name of the doctor that reveal too much about a doctor's practices, particularly when referring to things gone wrong in your treatment.
Amen! Many here have been known to slam their drs even with no names mentioned. A savvy person can usually figure out who they are talking about... and that is dangerous for the dr.
Posted by sparkle7 (Member # 10397) on :
EscapeFromLymeland - Here's a link with info about what you asked regarding brain wave patterns. I don't want to go to far off the topic here.
It's nice to have freedom of speech. I also respect the rules of this forum. Whatever Lymenet.com decides is OK with me. I don't know how they are handling the situation about the doctor we can't name here. It's just kind of awkward if we would like to discuss the pros & cons of his published works.
There are many websites where you can rate a product or service, restaurant, business, seller, buyer, transaction, etc. It would be nice to see more websites where you could rate doctors. I think there are a few but I don't see alot of activity on them. I know that most doctors probably do not appreciate that sort of thing.
Nothing is truly secret these days. Someone once said to me - Locks are for honest people...
Posted by springshowers (Member # 19863) on :
My Point is a more broad one. I think we are not seeing the BIG picture here.
The more we hide the less attention and validation we will get.
We are making the LYME community look less than Legit and more like we "have something to hide" and that makes us look less than valid.
We all want more attention and care and funding and such toward Lyme. We yet act in the opposite manner. (not on purpose) I believe that the way the LYME forums represent LYME disease overall and the patients and doctors is making that problem what it is today 10 fold. That is really concerning.
The reasons posted about not posting names make no sense to me and even if I follow your logic I am still thinking on broader terms and we need to make changes to help validate the whole community.
Tracy who has been in the middle of those court trials is giving us good inside information that the Forums are not part of how these doctors get into those legal spots they are. I totally believe and already thought that.
I think we would HELP the whole cause by COMING OUT!!
I know that the FORUM can make their own rules. I think though maybe this should be thought about as a new change and a change for the better for the cause.
This is a good discussion and I see no fighting. I think it is a good exploration of the feelings and thoughts of this subject and how it affects us and the whole community and that is a good thing.
Some people feel that if there are disagreements then its a fight. IT is not that at all. Everyone is not going to always agree but it is those conversations and back and forth dialog that helps us move along.
I Myself hope the moderators are reading this and I hope they are thinking hard about it in a LARGE SCOPE and WIDE spectrum of thinking.... so that we are Really Acting in the best way.
Things change. And this may have been best a decade ago. But I do not think it is close to best now..
I am SURE that the rule is intended to be helpful. That is not in dispute. But there should be some new thought processes and evaluations of that rule and maybe change is in order?
I surely see that at this time it would be best.
Change can be bumpy but it can be best. For example sometimes when a new law passed and such we get backlash off the bat but then realize quickly that it was a great change. In general people are reluctant and resistant to change.
I hope that it will change though because I think we will all be treated MUCH Better in the end and with respect and validation.
THE THINGS WE HAVE ALL BEEN SCREAMING FOR to move forward in this disease and as humans suffering from it.
I read so many posts that are all about how they are treated. I can see how doctors might be relctant when we say Lyme if they know how we act in these forums and act out in the world like we have all these underground worlds and secrets and as if we patients are protecting doctors and whatever other reasons. I feel sad about that when I start trying talk to a doctor or professional and that is brought up or indicated and I have to try to explain?
So what about the REST of the medical community? We in essence are pushing them away. That is how I see it. If you read my discharge papers from my last Hospital week stay they wrote all about everything I said which was all about lyme disease and co infections etc. Even all the doctors who I have been seeing who are supporting me in treatment and my well being. They started to quote me in the reports but without quotation marks. So it sounded as if it was written as factual and by them. So they were representing it and me well. There were a few remarks like "patient claims" or "patient believes" but that would be expected. Some of those doctors including my main doctor reluctant about it to say the least but after the week was over much less so. I started to have the nurses talking to me about it and the doctors and they were admitting how much more often patients were speaking about it and coming in saying they had lyme. I saw that in turn they were validating the existence.!! Isn't that what we want?
I was being talked to and introduced and written up and reported as a lyme patient.
I am willing to take recourse in my own insurance or my own case for the better of thinking it will help the cause and others now and in the future.!!
I am proud of that.
I also have been very open in my pain management doctors office. Who now introduces me to his interns and has me do interviews with them to explain my situation and what I have been doing or trying to do to treat this disease and uses it as a learning tool. This also will help the next patient.
So those or other examples of speaking up honestly in our medical community.
Then there is the idea of speaking up honestly in these forums. It will help us and those coming into this disease and I believe even the doctors who are struggling to be taken seriously.
I can not participate in this because of the rules here and on most every other big board. I know of a couple board who think like me and do not have that rule.
WE are doing no favors by keeping things the way they are..
I know I have gone on and on now and I am sure my point has come across.. SO Sorry to be so long winded..
But I hope it might help in some ways to get the thoughts and ideas turning and thinking differently.
Blessings to all..
[ 04-27-2010, 07:26 PM: Message edited by: springshowers ]
Posted by Tracy9 (Member # 7521) on :
Thank you Springshowers, excellent points and I do agree with you.
I actually own another Lyme Forum, www.lymefriends.org, and even over there our moderators don't agree with me about letting doctor's names be openly stated, nor do many of the members. It is a very long standing, touchy subject in the Lyme community, that's for sure.
I think you make some excellent points about the "big picture", and I have had the exact same experience myself in the hospital and ER with my treatment...what I say is the reality and is not questioned, and I have educated many providers that way as well.
Posted by springshowers (Member # 19863) on :
I wonder if we could hear from the moderators on this issue and if there is a willingness to open up dialoge or thinking about this subject.
Not asking for a change immediately or anything but I am wondering if there can be some discussions or considerations by Lymenet.
Lymenet is obviously one of the biggest and most influential lyme forums and could really take the lead in this area
Thanks Tracy for your comments and insight. That is interesting about LymeFriends. So there is no rule there about not posting names? Is it just within the forum that there is this tension?
I am getting the feeling that this issue is more of something that is within just some of the "forums" and I have not seen it or heard of it in any other arena.
Lymeinfo.com site, that has tons of lyme info and links, posts doctors names and even info about doctors etc outwardly with names and clinics and lab names etc.
Posted by TerryK (Member # 8552) on :
Tracy wrote: these boards are peons and not important enough to lend any credible risk to our LLDs.
I didn't understand why the rule existed when I first started posting at lymenet. Lou (moderator at the time) queried someone who is in a postition to know details about lawsuits regarding LLMD's and whether on-line forums were still a problem and they stated that information from an internet forum came up in a lawsuit and that we still need to continue with the rule of not mentioning our doctors full names.
Spring - please check out some of the forums that discuss LLMD's (names, protocols etc.) openly. There is at least one that I can think of that does the opposite of legitimize our cause with their discussions of LLMD's and they are lyme patients who rely on LLMD's for treatment.
The information that they post about LLMD's is very disrespectful and goes a long ways toward making us all look like nuts. I think changing the rules would open a can of worms and cause all kinds of problems. I doubt lymenet has the resources to monitor the change that you want.
I for one need my doctor and I know for a fact that my LLMD objects to the discussions that they read on this forum and another forum that related directly to them. That's enough for me.
Terry
Posted by Tracy9 (Member # 7521) on :
It is definitely a delicate balancing act....but there are most definitely forums where they openly post doctor's information, but not in an inappropriate or bashing way. That's the risk on a discussion forum, that the information will be presented in a way that could be libelous; however anything written on here is basically heresay and probably not admissable in a court of law.
And truthfully, there has been plenty of bashing and treatment protocols revealed, etc here right along....with "Dr J" or "Dr H"....like someone said, we ALL know who we are talking about anyway.
I could be Gary Wormser and send you a PM asking you for more info. I could give you a little sob story and you'd tell me anything you need to know.
I never, ever saw a word about the internet or the Lyme boards come up in the Dr. J trial, it was never even referenced by anyone at hearings or his attorney, whom I spent hours with, and Dr. J has to be one of the most persecuted LLDs out there!
They tried to dig up anything and everything they could on him....and this stuff was never among it. I just cannot stress enough, in light of all the testimony we heard and gave ourselves, that bringing up a Lyme Forum would have been laughable. Totally inadmissable. These lawsuits are dealing with hard core stuff. Not message boards.
That is not to say that there is NO risk if you blabbed all about Dr. John Doe and how horrible he is, how he screwed up your PICC line, never did any bloodwork, how your liver functions were off the charts and he never called you, how you had a severe line infection and almost died and he didnt' even answer his on call pager, and you ended up in the hosptial in the ICU with sepsis due to his negligence. Now that would not be good, but then again, who would want to go to Dr. John Doe if he was that BAD?????
[ 04-28-2010, 02:50 AM: Message edited by: Anna Lee ]
Posted by TerryK (Member # 8552) on :
Tracy - This was before the Dr. J trial. There are many doctors besides Dr. J who have been taken to court for having the audacity to treat us. Some have lost their license, their practice, homes etc.. It's really sad.
I was not privy to the exact nature of the information that was perceived as a problem but I trust that most of us are not aware of everything that goes on and therefore are not in a position to make an informed decision about some of the policies that are in place.
Anyone can say anything they want about a doctor. Doesn't mean it is true. A doctor's reputation can be ruined by a person who may not be representing the truth including those who have an agenda that is not in our best interest.
Terry
Posted by Anna Lee (Member # 22992) on :
The rule that protects Lyme treating doctors is not expected to change. AL
Posted by seekhelp (Member # 15067) on :
Discussion ended. There. Posted by 8man12 (Member # 7664) on :
You people are realy wrong.
Go to your local Infectious disease doctor, why go to a lyme doctor.
Bet you wouldn't want to post his name after a few months with no antibiotics.
The majority of lyme doctors treat far longer than the medical protocal.
You could be hurting alot of sick lyme patients.
Making them hve to travel for hour further if there doctor was forced to give up his liscense.
The IDSA, is never going to go for longer than 6 weeks treatment.they are the Bible when it comes to how we are to be treated.
Be happy you have LLMD's.
If it were not for one i would have been dead 14 years ago. I was diagnosed as ALS, and given a year or less to live, ONLY after seeing 3 Infectious disease doctors at big University hospitals.
When the government wants to pay for your expensive treatments for life, and the IDSA, agrees chronic lyme exists, then i dont think saying names of doctors who are breaking a bogus treatment protocal, would mind there names being posted.
Like is said your local Infectious Disease doctors number is posted all over, go see them for your lyme treatment.
Then come back in a year and tell us all, post his name, all you want, about how well he is treating your Lyme disease.
Posted by Tracy9 (Member # 7521) on :
quote:Originally posted by seekhelp: Discussion ended. There.
It's always nice to hear people's points of views....doesn't mean the rules are going to change. Discussion is good.
Well...except when it starts with "You people are all wrong." That's never the best way to start a discussion!
Posted by peacemama (Member # 17666) on :
quote:Originally posted by springshowers: [QB] My Point is a more broad one. I think we are not seeing the BIG picture here.
The more we hide the less attention and validation we will get.
We are making the LYME community look less than Legit and more like we "have something to hide" and that makes us look less than valid. [QUOTE]
Yes! I agree. Broader view. absolutely. This goes along side broadcasting the whole Plum Island thing. We know it to be true, but I have had MANY friends tell me that our whole movement loses credibility the minute we start talking about conspiracy theory stuff.
Not that it isn't true. . but, IMO, we have more obvious things to work on.
And things that make us look like we are not a fringe movement.
Posted by sparkle7 (Member # 10397) on :
Credibility to who? We're already nut jobs to "the normals"... CFS, Fibromyalgia, Gulf War syndrome, etc. - these illnesses are already being considered as a mental condition to be treated with anti-depressants.
I've had doctors throw samples of Zoloft at me. If we never get to the bottom of what is making us ill - how are we going to be able to treat it properly?
Conspiracies abound in every area where there's power or money to be made. All of this stuff does not happen by coincidence...
Who decided to start prosecuting these doctors who treat Lyme? Didn't a bunch of people have to come together to decide this? Isn't this a conspiracy? Or am I just a crack pot having paranoid delusions?
Posted by Keebler (Member # 12673) on :
- In my state, any doctor who even wants to help a lyme patient would be at huge risk of loosing their medical license (it has happened, more than a few times). Of course, were there to even be any MD willing or knowledgeable to treat in my state, they'd not want to have their name posted on a world wide web site.
Others choose to write books or publish articles to further openness and understanding. Those articles and books are generally public knowledge, even on authors' own web sites. And, to be quoted or even the title referenced, by copyright law, their names have to go alongside the book.
And, without knowing about those articles and book, undiagnosed or under-treated patients will continue to get worse. More will die. No doubt about it, those who write save lives through their work being in the public eye.
But there is a clear distinction here. Those who are published and those who are private.
We cannot assume that all doctors who work with lyme patients want their names out there. Unless they specifically jump to the front of the line, we must assume they want to maintain privacy to work as best they can.
We can't "stand up for our rights" if, by doing so, it jeopardizes the very livelihood of those doctors trying to quietly treat us because - right now - in this country, that is just the way it is. It is not safe (at least not in all fifty states).
For now, for those who want to be advocates, there are other ways to help change what's wrong. -
![[Smile]](smile.gif)