posted
To all I have been offending some people on lymenet and not even realizing it. I want to apologize for my repeating myself with the same questions over and over.
I do not realize and I forget what I wrote and said within a few minutes. I also never meant to offend any LLMD by asking for information on them.I am just scared like we all are and my mind is very confused.
I seemed to have mixed up a comment with a private message and did something wrong on the site. I am not able to maneuver my way around the site correctly. I will stay off the site so I do not endanger any doctor who is helping those with lyme.
Thank you all for your support these past few weeks. It is appreciated more than you will ever know. I will continue to read what you write as a reference. I have not problem giving everyone my email as it is not top secret and I enjoy your comments and help.
I pray for your recovery everyday amd wish you all the best always. [email protected]
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
I personally come on here alot, and have never read anything offensive written by you. Not sure what you could be referring to.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
No one is perfect, especially those who are somewhat incapacitated with Lyme.
Take some time off and then decide. I am sure whoever you offended, is not going to hold it against you, especially if it was unintentional.
Dan
Posts: 2924 | From Minnesota | Registered: Aug 2006
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Please don't feel like you need to stay away. I have no clue as to the specifics of what you are referring to, but it wouldn't matter anyway... you are allowed to make mistakes. We all do.
We hope you stay. We all need to stick together.
Posts: 2238 | From East Coast | Registered: Jul 2010
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
You are learning, like the rest of us. Don't stop using the tool to your learning because of someone's negative comment. Please realize, whatever was said wasn't meant to hurt you or stop you from posting!
I don't know how I would survive this tragic disease without my lymenet family. There are positives and negatives... just like magnets. Stay away from the ones that repel you.
"The giving of love is an education in itself." ~Eleanor Roosevelt
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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Camp Other
Unregistered
posted
I don't know what mistake you made, but everyone makes mistakes now and then. Of course it is up to you how you want to proceed, but I would welcome your decision to stay here and continue the discussions.
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Annier, I really think you should reconsider. I bet you there is not a person on this site who has not made errors due to cognitive issues, myself included.
I sometimes go back to a post of mine a few days later and see mistakes. That's what the edit button is for and it's a favorite friend of mine.
I don't think anyone here want's you to stop posting. And I think you are a quick study and have learned so much so quickly.
When one is new to a site it takes a bit to learn some of the spoken and unspoken rules and how to navigate the site but we all have experienced that.
Others have learned from your experiences, as well. We all learn from one another and thank goodness we have this wonderful community to come to for support, to learn and to share our experiences.
Take a day or two if you must to get some perspective about how you feel but please do reconsider your decision.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
Thank you abx and all for your reassurance. I now learned by someone who PM me where this edit button is located. I attempted to take the LLMD name out but not before one of the moderators did it for me and sent me two PM's with my "slap on the wrist" for my mistake.
I have learned that I can only ask about my medical issues on here and no complaining. It is ok, since I have many now who email me personally and it is much easier for me to cope with. We can moan and groan or laugh at the silly mistakes we make with this crazy disease.
Hey today I found my toothpaste in the freezer! Friends at my job alway said to do stand up comedy. This may be my shot at success!
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You write that you have "learned that I can only ask about my medical issues on here and no complaining." (end quote) -------
Where did you get the idea that you can't complain?
Expressing sadness, dismay and even distress is part of how a support site works - those posts are best in General or Off Topic but, really, I'm confused where you got the idea that you can't voice emotional pain?
Medical education and support is just part of LymeNet. Practical and emotional support is another componet.
Of course, be ready for suggestions and action plans but feel free to voice sadness and many will try to help you get past the bumps in the road. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
now, dear, and c'mon guys...i'm using this as a term of affection for another member, i'm in this group too.
i think there was a really big shake up oh, about a year ago, over grammer, punctuation, adn all, adn i got mixed up in that.
so i've been there too. ain't no big deal. i post a lot, over and over. i can imagine everyone going "ouey va..." or other such comments.
but i just keep on plodding along, and you will too. besides, i think i amuse some people....
hang in there and doncha go anywhere. i must have missed the ruckus...
besides some of us forget in a new york minute what we're doing on here and we end up going "huh?"
so stay and entertain the troops.....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I have heard just about everything pass through these threads since I joined 8 years ago. And we all get over it, take what we need, and plod forward.
God knows I made a few mistakes. But I can't live wtihout knowing you all are here, whenever I go to my computer...someone cares.
Don't leave.
Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Annier, glad to see that you are back. Oh, I remember the days of putting all kinds of things in the freezer or vise versa, such as ice cream in the fridge and finding it the next morning all melted. Gotta keep a sense of humor with this illness but sometimes it gets the better of us.
I'm glad you found the edit button but remember if you ever have any questions that you can't figure out you can go to the "faq" above and if you still can't figure it out click on the name of a moderator and ask for help.
They are there to help us and if we mess up sometimes they will edit our posts. It's no big deal and as has been already said all is forgotten in a NY minute!
Many of us voice our concerns and frustrations with this illness here and there are other sections, too, that at times may be more appropriate for a particular subject.
The only subject that is off limits, and it's to protect out LLMD's is to not discuss in great detail treatment protocols of a particular LLMD or reveal too much about any LLMD. We need them there and practicing, for all of us.
Lymeland can be a strange place at times, especially when we are new to it, but it comes down to protecting our doctors. We do it for good reason because without them we would all be in serious trouble. I think we are all pretty much united in that area.
And that's why we have the PM system, so that we can talk about those things with others privately. It all works out fairly well, once you get the hang of it.
Glad to hear, too, that you have made some new connections, or friends if you will, on the site. Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i think i'm the only one tho that brushed her teeth with vagisil....
lol....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
OMG!!! I won't even ask how did it taste. Hopefully, your tongue was yeast free after that. Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i think we should start a new topic.
i've done a ton of really off the wall stuff, but that's another topic and i won't "hijack" this one.
but yeah, it was gosh awful....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Relax, stay awhile. If anything this site should not have even a spec of judgment. Grace, Grace, Grace ,Grace, LOVE !
There is a lot I can learn from you !!
PS: I come to complain mostly, when I get no sympathy from my family and friends.
Posts: 85 | From Long Branch NJ | Registered: Dec 2010
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
I have repeated myself for 6 years, and I'm still on. Not any better, but still on. Didn't read all the replies on the post, but all we have it this group that understands.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
I'm in agreement with the bunch. We all need each other to get through this.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:Originally posted by annier1071: Thank you abx and all for your reassurance. I now learned by someone who PM me where this edit button is located. I attempted to take the LLMD name out but not before one of the moderators did it for me and sent me two PM's with my "slap on the wrist" for my mistake.
I have learned that I can only ask about my medical issues on here and no complaining. It is ok, since I have many now who email me personally and it is much easier for me to cope with. We can moan and groan or laugh at the silly mistakes we make with this crazy disease.
Hey today I found my toothpaste in the freezer! Friends at my job alway said to do stand up comedy. This may be my shot at success!
You can complain all you like in the General forum. I do. The medical forum is only for medical related answers, questions and ongoing discussion of that sort.
At any rate, .... If you have questions, we're here, so ask them. If you make a mistake, we'll do our best not to throw stones. We live in glass houses.....afterall.
-------------------- 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.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- A "slap on the wrist" or just a note? Remember to read posts with a neutral tone of voice. So often, with the absence of vocal inflection, we can read the same words with very different effect.
So, if you think you "hear" anger or harshness, it helps to reread as if coming from a gentle person who is just informing you of a matter of importance. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lymeboy
Unregistered
posted
why not apologize? you shouldn't leave, this is a great resource for Lymies.
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
She doesn't need to apologize. She mentioned that already in her post and it wasn't even necessary. She's staying!! Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
personally, i think ya'll are just going around the barn about this.
we all feel lower than a snake's butt in a wagon wheel rut so just let this pony run...
ya hear???
(she drawled....)
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
quote:Originally posted by Keebler: - A "slap on the wrist" or just a note? -
Just a note asking her to keep negative comments about LLMD's off the board. I thought I was understanding seeing that she's a new member and maybe isn't familiar with the terms of use.
I do hope she stays. I know the board was a great help for me when I was sick.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymeboy
Unregistered
posted
do negative comments include bad experiences w/ docs? I would want to know who is a waste of my money and time. isnt that why we ask?
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- The PM function is to share sensitive opinions and personal experiences. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
quote:Originally posted by Keebler: - A "slap on the wrist" or just a note? -
Just a note asking her to keep negative comments about LLMD's off the board. I thought I was understanding seeing that she's a new member and maybe isn't familiar with the terms of use.
I do hope she stays. I know the board was a great help for me when I was sick.
Why are we not allowed to say negative things about LLMD's? I mean if that is the way she feels then why can't she express that? Iam confused
Posts: 574 | From Out there somewhere | Registered: Jul 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- General experiences are fine for basic questions and situations.
However, detailed personal opinions and experiences - or questions about a specific doctor - are best communicated through private messages for many reasons, mostly because LLMDs are not to be identified on the public forum for reasons of their own security and patients' continued access.
It's very easy to use the PM function for details that involve identification. Also, it's good to contact area support groups to get a cross section of experiences before selecting a doctor. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
If people want to share their negative experience about an LLMD, and to receive or hear both positive and negative responses -- they can message me.
I collect patient reports (as everyone knows by now, right?)
At any rate, no one here has likely ever had an encounter that I haven't heard about from someone else over a single LLMD.
E-mail or PM for reports
-------------------- 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.
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I could have written the first part of your post. With cognition and memory this bad, I am always struggling to figure things out so I repeat myself.
I was admonished for expressing my opinion about the author of a book that was also a LLMD. I figured since it was published information for sale on amazon.com, it was ok to do a book review.
Someone immediately corrected me and I felt unfairly reprimanded. A year later the same topic came up and the moderator thought it was acceptable to discuss.
So we all make mistakes. Most of us are still sick with not just cognitive issues but emotional ones as well. I hope you do not leave.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I'm sorry some feel "reprimanded" when they get a PM from me or from Lymetoo. We certainly don't *want* you to feel that way, though by the nature of it being a PM from a moderator, I don't think there's any way to avoid that. Usually we're just pointing out one of the terms of use someone doesn't know about.
Keebler has really explained things well. Thanks, Keeb!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
well i am confused.
say i state that i went to a doctor and i don't mention name or place or kind of doctor and he was a jerk.
what about buhner? everybody mentions his name his herbs? and the marshall protocol??
that's not ok???
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Buhner is not a doctor, he's an herbalist who wrote a book on Lyme Disease.
The Marshall Protocol is a protocol.
What's not okay is to say, for example, "My LLMD is money-grubbing." Or to tell all about your bad experience with him. Etc. (I'm not implying that this is what the original poster said, I'm giving examples).
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Camp Other
Unregistered
posted
Actually, this is something that has confused me, too... When is and when isn't it okay to use a name? I've used Dr. S and that is okay. Someone else writes Steere and he's a doctor, but it doesn't get changed to Dr. S. I use a doctor's name who isn't a Lyme doctor but an academic researcher with a PhD, and their name gets changed.
If I link to an article in the New York Times and directly in that article it uses the name of an LLMD who is being interviewed about his views, and mention his name and the article here, I get the impression that the name will be edited here because that is what happened when I mentioned two Dr. R's (two different ones, thus reading about it later got confusing) in another newspaper article. I don't understand that, because anyone could click on the link and see which doctor I was talking about.
It seems to me that it would be less confusing if "An MD", "My MD" and "My LLMD" and "An LLMD" would actually provide more medical doctors with greater privacy because then people aren't here trying to figure out which Dr. A, Dr. B, and Dr. C are which and saying what - either members or people passing through. If they want to discuss which doctor then, they could take it to a PM. Otherwise, if someone is an academic researcher or English professor or Sanjay Gupta on a major news network then showing the name is okay.
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
what???
maybe it would be better if we just say "our doctor" and then if somebody wants to find out who it is, pm them.
BUT, if they are a published author, and can be found in public forums, whether on the net, bookstore, or tv, then we can use their name. i mean if ....oh foreget it.
see, that's why i stay terminally confused???
and yes, some of them are jerks....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I know of one LLMD who has told me personally that he doesn't want his name mentioned here and he has published articles/books, etc.
On the other hand, others don't care.
So, the policy is, no LLMD's names.
As a moderator, I can say, I do not know all the LLMD's names and I do not have a list, so if I have edited out a Phd's name, it might have been because I wasn't sure.
ALL doctor's names are not reported, so we miss some, so if some were not edited out, it's because we didn't see it.
The terms of use say - 5. You also 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. B. in NY. This person's contact information should not be displayed on LymeNet. However, you may email this information. This is to protect those that treat Lyme and the Lyme community.
The rule is there to protect those doctors willing to treat us. If Dr. S's name was not edited out, it is because he isn't in danger of losing his license for treating Lyme long term because he doesn't treat Lyme long term.
Now, let's please get back to the topic of the thread.
*** moving to general support ***
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
Wow, I had a similar experience. (Seriously)I've freaked people out before, then felt really bad and felt stupid. Heck, I've even been 'shamed and blamed' on here before. I chalk it up to my own OCD, though! LOL.
I think learning not to internalize and take things personally is the hardest thing to do. I'm always worrying that I've ticked somebody off, cause I'm so off the wall and outspoken. I just won't shut my mouth!
You take care, my friend! Be blessed!
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Camp Other,
Steere is not a LLMD.
It's important to know what he writes as most of what he writes is very much against LLMDs and lyme patients and even against lyme, itself, being as serious as it really is. But we need to know what he and other IDSA megaphones are putting out there.
The main reason that posters' personal LLMDs are not named here is for their privacy and for ours. Discussions can be vague on forum and much more detailed in private messages for those who want to compare notes to see if a particular LLMD may meet their needs - or to better understand parts of a protocol.
In the cases of some going to doctors who say they are LLMD but they are not, the PM function also serves for personal research.
Metallic Blue has taken a lot of time to compile patient reviews. Those is very helpful to many.
LL authors who are not treating patients are often listed with their works (when links are posted) for ease of identification and memory association as so many titles are similar. For example, Burrascano is often cited as a main source, sometimes called Dr. B. He is no longer treating patients but still is involved in research and writing.
Mainly, it's patients' LLMD whose names need privacy. There have been many threats to LLMDs and those are not to be taken lightly. It may not be Fort Knox, but by us not posting their names and not picking apart bits of individual LLMDs' protocols that we may not have all the necessary information about - well, that is a courtesy and at least a bit of privacy to doctors who are risking a lot to treat lyme patients.
For more detail, be sure to see the documentary "Under Our Skin" about how LLMDs are being harassed and some run out of practice - just for doing a complicated job that other doctors ignore. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- These works explain a bit about why LLMDs need our help in not putting them under spot lights. -----------------------
Thank you very much for your support. I will stay on lymenet and probably continue my errors since I do place toothpaste in the freezer and found the missing car keys under 2 feet of snow while shoveling. Don't even remember taking the keys out since I cannot drive???
I own Underourskin and they are 2 for 1 now on sale to spread the word. I own Cure unknown also as well as five other books suggested on here. Thank you for the advice in reading them, just wish I could remember what I read now.
I feel a lot better knowing that I was not the only one who did wrong on here. I am a very quiet and gentle person so much so that I do not even call the doctors office when I probably should. As my husband says "grow a thick skin" wo the world cannot tear through it.
This is not me, I will not change my gently heart for anyone or anything. So, I will still cry when told I have done something wrong and I will get over it.
Thank you again, much love and health to everyone always
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
| IP: Logged |
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