shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
I just received an unsolicited private message from someone who asked me about a specific doctor, by name, as if I had spoken about him in a thread, which I didn't. It was only the third post for this poster.
I told the poster to speak to his own doctor about treatment options. I hope you all will not give up private information about a doctor to anyone you don't know.
Take care,
Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
This has happeed to me too.
Be careful-
Melissa
Posts: 3905 | From USA | Registered: May 2007
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posted
Hi everyone, I read the thread and felt anxious. May be for no reason. I live in Bulgaria and this forum is my main source of good tested information. The doctor who finally agreed to help me is not an LLMD, but is open to learn and does not mock at me like the rest. I have PM-ed some people here and have received very helpful suggestions and am really glad I got answers. After reading this thread I felt anxious that somebody might get suspicious about me, too(may be my anxiety is unreasonable). Just when you live in a country with no LLMD's this is the primary way of getting help. I am not posting a lot either, because I make constant searches in previous threads and obtain a lot of info from there. I prefer doing this before I PM somebody with a very specific question that i know he or she can answer. In this way i know i am not waisting your time. I also prefer not to post a question that has already been asked and answered, may be I am wrong?
I am very grateful to all who have answered me. Trying to fight this disease makes me feel lost most of the time and constantly looking for help.
Thanks again.
angelina
Posts: 3 | From Bulgaria, Europe | Registered: Aug 2007
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posted
I am also a "newbie" since Sept (or Oct) and only a very few will recognize my name, but that doesn't mean that I haven't been here reading almost every day.
I would rather read and obtain information than to post. This is the main reason I am here...to learn; I don't have any information to give.
I also PM'd a few members asking if they know of any LLMD"S and I did get answers; however, since I am from Texas I did PM a few other members I noticed from Texas, too. I never received any replies.
Thanks to all who post and share there knowledge with the sick folks. I know I appreciate it.
I have not been financially able to see the LLMD yet but I have been doing a few things suggested here and my bone pain is less, I think.
Posts: 31 | From Central Texas | Registered: Sep 2007
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posted
Hey Angelina...don't worry!! We'll help you !! We just have to be slightly cautious as people sometimes try to get info that they use maliciously.
Lymbo....Didn't you contact me?? I HOPE I replied!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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I'm not IN Texas, but most think I am so I put myself in that category.
I'm IN TEXAS 24/7 in my mind!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
I answered a few,,,sometimes wish I didnt.
One who ONLY posts when they want something. cant remember what state there from of where they are seeking treatmnet.
Then you ask a simple couple questions and they wont answer for nothing,,wont give time of day till THEY want something more.
I am sure there are more than a few fishy posters here,,,just NOT sure how to sort thru them all!!
So they add a short sob story to their couple lines typed,,,doesnt mean they are who they say they are.
Altho I PREFER to error on side of 'why would anybody waste their time doing that???"
They have all the names and addresses of those they want info on anyway!!
Hope ALL the worthwhile newbies get all the info they bargain for!!
Sometimes 'wonder' how badly we freak them out with huge packets of pages and pages of 'stuff',,,great info but info overload to MOST sick people!!
Would it be eaiser to have that info in like a frequent asked questons format,,,and let them get it from there??? I would THINK eaiser on sender and reciever!!(Just thinking out loud!!)
Alot like Dr. B's guidelines that I first saw when coming here years ago,,,and printed it cause I thought what useful info!!!
On my slow dial up it would have jammed my e-mail recieving all that let alone other pages to go with!! AND maybe I was browsing(if I WERE a newbie these days) and not really interested!!
My opinion BUT--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Don said:
quote: Sometimes 'wonder' how badly we freak them out with huge packets of pages and pages of 'stuff',,,great info but info overload to MOST sick people!!
I agree with you Don. I know I could have deleted it if I had received all that info when I first came.
Bettyg, I know your heart is in the right place, but that's an awful lot of info at once, especially for us neuro-lymies.
Gee, I have enough trouble trying to read it on the link on page 1 in Medical.
There are too many colors, lots of bad links, and it's frustrating trying to sort through it all, due to the lack of organization if it all.
Again, good idea, just TMI, IMO.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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bettyg
Unregistered
posted
quote:Originally posted by lymednva:
Bettyg, I know your heart is in the right place, but that's an awful lot of info at once, especially for us neuro-lymies.
Gee, I have enough trouble trying to read it on the link on page 1 in Medical.
There are too many colors, lots of bad links, and it's frustrating trying to sort through it all, due to the lack of organization if it all.
lymedinva,
i've never been told of any BAD links; why didn't you AND ANYONE ELSE send me the SPECIFIC link/s earlier so i was aware of this?
If ANY OF YOU COME ACROSS THESE, PLEASE SEND ME A PM WITH THE LINK SHOWN OK! i'd like you all to get accurate info !
lack or organization ... that's what 38 years of chronic lyme does to you! i was a secretary for 25 of my almost 31 years of working; had OUTSTANDING organization then.
it's organized in it's own way; best i can do now days.
ADDING: the first part are IMPORTANT things to know immediately, and i tried to ALPHATIZE subjects there A-Z. next part is A-Z also.
after that; last 25 pages ALL DEAL WITH SSDI, DISABILITY INSURANCE BENEFITS!
did you ever copy it over to MS WORD, ?
did you delete my RED color I'm guessing you are talking about doing an entire block change of color for ALL THE PAGES AT ONCE?? *******************************
did you ever then use EDIT, FIND, and type in words of what you were looking for and see what popped up? I DO DAILY; helps tremendously. great TIMESAVER!
i also taught myself internet since it was just coming in as i had to leave due to health.
just fyi.... yes, my heart is in the right place. i have probably received 12-20 complaints in the 12-18+ months i've been doing this.
ADDING: I'VE SENT THIS TO 4500 - 5000 MEMBERS since i started. that's very few complaints for the volume i've sent out.
posted
I really value this website...the information posted as well as the support from others that understand. That being said, I like some don't want to scare anyone off from reading or responding to me due to lack of posts so I'd like to tell a little about myself and my history.
I am an almost 29-year old wife and mother. I was diagnosed in 1997 just as I graduated high school, but doctor's have since told me that I was probably bitten about 5-6 years prior to that. I have had three picc lines over the years.
I was very sick in college, when I got my first picc line. Lots of pain, couldn't remember where I lived from one side of campus where the academic buildings were to where the dorms were. Once someone took me seriously and helped me find my way to the dorm, I couldn't remember my home number to call my mom. I now have even my home number written down).
During the last years of college, I stared to feel better, met someone I thought understood. Got married.....got abused....got divorced (married only slightly more than a year).
The whole stressful event triggered another relapse. I was naive and stupid and I think many know how entoxicating someone can seem that appears to have a lot of strength and concern for you.
Since that time I am now married to a great guy. Not abusive at all. :-) But like anyone who doesn't live with the daily pain, doesn't quite get it...all the way.
I could give so many more detailabout the illness itself. Went blind for four days in 2001, sometimes I really get the brain fog as Dr. S calls it, mostly these days it's just joint pain in all of my joints down the left side.
I have to admit that I have not always participated in this site as I should. Mostly taking...getting information and support by reading the posts and posting here and there. Then I go through a period where I think I can make it on my own.
I definitely plan to stick around and help others as I can. THANK YOU ALL FOR MAKING IT THROUGH THIS VERY LONG POST. and thank you, than you, thank you for your friendships and for sharing your knowledge and experience with Lyme.
PS. I'm also a high school Chemistry and Biology teacher.
Posts: 49 | From Holly Springs, NC | Registered: May 2007
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posted
Thanks! Will do...and by the screen name...maybe a backpacker too? I used to love to hike as well.
Posts: 49 | From Holly Springs, NC | Registered: May 2007
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bettyg
Unregistered
posted
edited mine a little adding this comment and a few others.
fyi, during the time i've been sending out my newbie package, i've sent to 6500-7000 members during this time!!
so to only have 12-20 complaints; i've very satisfied and majority write to thank me and start asking questions since they haven't posted on the board yet..
shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Thanks for the discussion, everyone. I agree, it is hard to know for sure if a "mystery" poster is a newbie or a troll. Bottom line, I would say this: if someone wants to know what specific protocols a doctor uses to treat Lyme, the answer is, "I don't know, call the doctor and ask."
Not only does that protect our docs, but the truth is, every patient is different, and different sets of symptoms require different strategies. Also, some doctors change their approaches as they learn more, and since the research is still unfolding, they should be changing as they learn more.
Just my $.02,
Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Betty-
You do a great service for all newbies!
Thank you! Melissa Posts: 3905 | From USA | Registered: May 2007
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I cut and pasted your information over into word and read and read and still reading. I can't thank any of you enough for all the material you put here. No one understands Lyme here in Texas except those that have it.
I had the tick bite with the "bulls-eye" in 1997 while working in a nursing home. I worked right with the town doctor but he was of the typical mind set of most. I received 2 weeks of oral antibiotics and then told I was cured!
Now 10 plus years later my arthritis has been so bad I just have to throw myself out of bed and go to work. At the same time my lyme started to act up my husband got hurt and has had to have 3 back surgeries this year.
I have been drinking Xango, taking cat claw, and just started the MMS. I will let you know how it works. I can say one thing, the Xango is wonderful and has given me what energy I have.
Thanks
Posts: 31 | From Central Texas | Registered: Sep 2007
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bettyg
Unregistered
posted
Melissa and Inlimbo,
thank you both for the compliments; glad the package has helped you/others! that's what it was intended for!
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posted
dear all i have just been reading some of your postings regarding newbies the information you put on here is there for all to see and very helpful also greatfully recieved. i understand you must be wary of new people and as i am one of these ,i really do not have much to tell you as yet my husband and i are waiting for a reply from a source that you provided to me.also i feel guilty that as my husband is not on any form of treatment yet as trying to find someone to take us seriously is getting harder so feel like a fraud if i try to communicate with any of you i just like to log on and read to see if it helps with our situation. thankyou all .emilyr
Posts: 8 | From west yorkshire england | Registered: Nov 2007
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Betty,
PLEASE dont misunderstand,,,I DO appreciate ALL you do for everyone here and especially the newbies!!!
I am SURE no one would take offense to your helping them!!!
Real neuro impaired lymies MAY be overwhelmed and not get ANY info IF they run scared and are unuable to cope.
BUT by and large I DO think that you help so many countless people. AND are friends to countless posters HERE and lurkers alike!!
I am next to puter illiterate so would have a hard time posting it to 'word',,,dont know what that means.
We SHALL assume for lack of PROOF that I am the dumbest so everyone else is able to do what I CANNOT!!!
I always say dont complain unless you have a better solution. "I" have NONE so 'carry on',,its the BEST system we have!!!
AND for sure KNOW we care for YOU!!!remaining--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
Fetz,
Welcome to Lymenet. Hope you get some good information here. I know that I found my LLMD here and have gotten some good advice.
Glad to see a fellow science teacher on this site, but sorry you are suffering. I teach junior high life science, but I tell people I research hormones for a living.
I love to hike, but that has been put on hold since I have to use a walking stick for balance right now. The last great hike I took was in the wonderful state of NC to see waterfalls.
Anyway, Blessings to you. Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8879 | From Illinois | Registered: Aug 2004
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posted
betty and others..i to am a newbe for my husband who can't look at tv let alone a computer..we have gotten so much help and understanding from all of you.I'm so glad i found this site..I don't post much because like others i do alot of reading..very helpful..again thanks so much madge
-------------------- madgen Posts: 342 | From newjersey | Registered: Oct 2007
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posted
I'd definitely be cautious about giving out treatment type of info that your LLMD has put together for you. If the person just wants contact information, then that should be ok. The LDA gives out that info readily.
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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bettyg
Unregistered
posted
Thanks to our sweety, just don! i do know what you mean don. yes, it can and is overwhelming, but if anyone just SKIMS and just works on 4 major things when they come here:
printing of ILADS guidelines;
printing of dr. burrascano's 05 lyme treatment guidelines;
printing off preparing for 1st llmd meeting
printing ofF igenex WESTERN BLOT IGM AND IGG blood tests
that's what they need for beginning, then highlite some areas they want to learn more of
MELANIE REBER'S FINANCIAL RESOURCES!! i showed her entire post vs. just web sites so it's 15-20 pages for that alone; give or take!
if i'd been taught/trained before i left work on how to create a web site, i would hve done that; but NO training; no site! again, thnks don for speaking up again.
we're al here TO HELP FOLKS in whatever capacity we still are able to!
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