posted
I think she posted somewhere the other day. Hope she is A-OK!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
I did a seach Lymetoo on Keebler, her last post was on Feb. 3rd.
Just seems like a long time for her not post anything?
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Hmmmmm...very odd. Keebler doesn't leave for long ever.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
I know, does anyone have phone contact with her?
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Anybody??? This is strange. Keebler, where are you??
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I'm sure she is okay, too. I think she's taking a break from the board.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
moving to general support
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Thanks Six. Everybody needs a break now and then.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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posted
i have a feeling she is fine and that's why she is enjoying a break:-)
Posts: 723 | From Montreal | Registered: Oct 2010
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Being fine would be very good. Hope you are out and about Keebler.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Keebler,
If you see this, would you PLEASE send me your e-mail address?? Thanks.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Hope Keebler is okay and didnt fall out of her tree house,,,like me.
Hopefully all is well!!! And she is just munching 'keebler' cookies.
Hopefully I didnt scare her last week with my observation.
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by Lymetoo: I feel certain she is OK.
Well, no, she's not.
She's pretty upset.
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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posted
I am not able to send her a PM. What's up with that?
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Missing you Keebler
Posts: 5237 | From here | Registered: Nov 2007
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Keebler disabled her PM because she was getting to many messages and was not able to answer them all. I think we will be hearing from her soon.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
NOT a happy camper. We lost ANOTHER one of the oldies. WildCondor gone then others. The youth is taking over here!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Carol I don't know the backstory. I hope that whatever upsetment happened can be resolved, as Keebler is one of the most valued people here.
Gael I hope you are right that we will hear from her soon.
Seek I hope you are wrong that another oldie is lost. Losing Wildcondor and BettyG were bad enough. The people here can't afford to lose Keebler.
Lymetoo I too hope she will post tomorrow.
Steve thanks for bringing this to everyone's attention.
Keebler, I don't know what, if anything happened. All I know is that you are VERY MUCH appreciated and valued here. NO ONE does what you do. PLEASE please continue what you are doing. I hope you realize just how much you help people. You are irreplaceable.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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posted
Keebler.. are you back?? You are a vital part of Lymenet.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
quote:Originally posted by Carol in PA:
quote:Originally posted by Lymetoo: I feel certain she is OK.
Well, no, she's not.
She's pretty upset.
Carol
Is there anything I can do, or anyone can do to help her?
Carol, are you able to keep in touch with her?
Keebler... I don't know what happened... I hope you don't stay upset. You have helped me a lot. How can I help you?
-------------------- 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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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Received a well written email from Keebler. She is putting her energy towards regaining her health.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
She was asked to take a look at the stickies and tell us how we could update them, as you can see by my posts. She was posting links, etc. in many threads in seeking, and we thought it was a good idea to ask her to update the stickies with that current information.
That way specific doctor information could be sent to newbies and we'd have the general information she was typing out so often all in one place where she could put a link to that single thread.
We *thought* it would be easier for Keebler, the newbie, and the people working in seeking a doctor. We had NO IDEA she would leave the board over the suggestion.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
BTW, Bettyg left of her own accord, but was banned when she posted her "goodbye" post, which was deleted. She was told when she cooled off and could agree to the board rules, then she was welcome back. She never agreed nor asked to come back. We thought she'd come back in a couple weeks after she left.
Wild Condor was banned by the owners, for constantly criticizing them and the moderators over how the board was run. Most of those old posts are still there, you can read them yourself.
I don't think it's right to bring these kinds of things up all the time. We didn't ban Keebler, and I really don't think the suggestion we made was a negative one at all. How could we foresee her reaction?
Some here unreasonably jump on the moderators' cases an awful lot, yet no one stepped forward and was willing to help moderate when we asked for help. Don't complain about how things are done when you're not willing to pitch- in and help.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- This is what really happened:
Lou Bachman email: Thursday, February 3, 2011 9:17 PM
Keebler,
An issue has been brought to my attention by the LymeNet Flash Moderator team and other users ... I have reviewed their input:
You are posting replies in the Seeking a Doctor forum that contain a significant number of links. Many new lyme victims simply cannot process all that information, they are mainly looking for LLMD names.
This is too much information for a newbie, very overwhelming and they will not absorb it all but most importantly it gets in the way of those trying to send out LLMD lists.
* Please do NOT post more than one link to the newbies in the Seeking a Doctor forum
* I suggest you post the "Quick Links to Popular Topics" since that is the entire reason for those links.
Thanks from the LymeNet Team for your cooperation, help and support of the victims of Lyme and other TBD's,
Lou B
PS - No one has directed you NOT to post in the Seeking a Doctor forum. You have simply been asked to slim down the number of links (volume of information) contained in your posts in the Seeking a Doctor forum.
Do you understand? Will you comply?
==================
LymeToo had PMed me earlier that day or the day before, suggesting that I post the link to the NEWBIE thread instead of what I think is most helpful.
PM
Lymetoo
posted 03 February, 2011 07:38 PM
Please DO NOT post links in Seeking a Doctor.
You may post the link to "Quick Links to Popular Topics" or ONE link to something specific the person needs.
Thank you for your cooperation!
-----------------------
Then, not ten minutes later, Lymetoo posted at this thread for everyone:
A bit angry at that, I replied with a post something to the effect of "you are asking for everyone to help but you don't want MY help - to give posters other guiding links?
My question was deleted from my post by LymeToo. So, now, (in the thread wondering where I am) when she writes that I can post if I want to, I know that if it explains what happens, she could likely delete it again. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- After that, SGK suggested I do something with the Quick Links but this is not what that is about. It is about my being able to post what I think is helpful and tailored to what a particular posters asks.
If someone said there tests came back negative, I posted a set of diagnostic links explaining all that.
If someone said they'd been dx with ALS but the treatment of a year or so was not working, I posted links to ALS articles.
Etc.
Yes, the Quick Links might be able to use some addition. But this is not at all what this is about. SGK's suggestion came afterward. It was a good suggestion but, again, not at all what this about. I think people like some specific responses. I WANTED links when I started out and there was no where for me to see all that.
The Newbie thread is hard for my eyes to read. It would be nice with an INDEX feature but that just is not possible with the computer function here. So, individualized responses, I thought, were helpful.
But, yes, I do understand. I will comply. No more individualized links. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Keebler, I also pointed out to you that we would edit the Quick Link thread to contain any and all links that you thought were appropriate so that the people are still getting ALL the information you want them to have.
And yes, my suggestion did come afterward. If you had asked us to update them, we would have. I was just pointing that out to you. Either Lymetoo or Loub would have agreed to add things to the Newbie Links, too.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- LouB directed me to ONLY post the Newbie or Quick Links - and nothing of my own.
LymeToo said I could post ONLY ONE link. Well, that's just not enough.
My links are not in the Quick Links. A few may be but certainly not all. It's a very short set to work with and there are newer links as time move on.
To tell any poster that they cannot use their own good judgement to help someone find information dismantles the process.
I had tried to avoid this public debate by just staying quiet about this. But it is important to correct what's been "reported" as happening.
Again, this is not about saying, well you can post the link to this or that OTHER thread. it's about using my own judgement in what information I've read that I think might be of help to others.
But, life goes on. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Your links and format is VERY helpful in the medical forum. VERY, VERY helpful. Also in general.
If you want the quick links changed or if you want to add a post to that thread, PM it to me and I'll put it there. Either way you want, either an added post or an edited format.
You could even have it be more than one post, ie, a post on diagnostic links, etc. Things that are relative to finding a doctor and diagnosis.
Things related to medical questions will come up later in the medical forum so don't really belong in seeking a doctor.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You can use these as you like. 3 sets of links, specifically for "Seeking a Doctor"
To follow. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Hopefully, others will be along with specific names that will be sent by PM to you. If not - or in addition - ---------------
To find your STATE Lyme Disease Association-
Web search: [your state], ``Lyme Disease Association'' and be sure that group is ILADS-minded
California - Lyme Disease Association (CALDA) is a non-profit corporation acting as the central voice for all tick-borne disease issues.
==============================
When you get a doctor's name, be sure to check about their being what we call ILADS-educated or ILADS-minded. Talk to your local support groups, call the doctor's office and talk with the office manager about the doctor's affiliations and experience so that you might find a "good fit" for your particular case.
Topic: How to find an ILADS-educated lyme literate (LL) professionals in these areas:
Naturopathic doctor (ND); Acupuncturist (L. Ac.), a doctor of Oriental Medicine (O.M.D.), or a doctor of Ayurvedic Medicine (D.Ay.), certified herbalists or nutritionists, . . .
** Includes many professional links, articles and books on complementary / integrative methods - & RIFE links -- all by LL authors.
(For lyme, a bulls eye rash is definitive. But only a few patients really ever get that classic rash. If a person has EVER has such a rash, that detail remains important for their lifetime.)
==============================
Lyme is supposed to be determined by a clinical diagnosis, from symptoms, history, physical and dialogue exam by an expert lyme literate doctor (LLMD). This explains why the testing is so tricky:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
===============================
Lyme may or may not be the underlying infection for some chronic illnesses. But, if there is lyme there are often other tick-borne infections to consider.
And, if whether it is lyme (or not), there are also even other chronic "stealth" infections that evade detection that can cause similar health problems.
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about: ----------
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
- at link.
===============================
There are many reasons to go ONLY to an ILADS-minded LLMD for diagnostics. However, if for some reason you find yourself with a doctor who is not LL, and they suggest either of the two things below, you need to know this:
* AVOID LUMBAR PUNCTURE (also called spinal tap). Many doctors want this done but it is NOT a good test for lyme and other tick-borne and stealth infections also have less invasive testing methods).
* AVOID STEROIDS if as they can make lyme (and other stealth infections) much worse and much harder to treat. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Where someone asks why their GP or an ID doctor isn't offering help, some of these links explain WHY an ILADS-educated doctor is so important.
Some of the basics regarding self-care are also included: --------------------
** Nutritional Supplements in Disseminated Lyme Disease **
J.J. Burrascano, Jr., MD (2008) - Four pages
==============================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
This book is based on interviews with 13 Lyme-Literate Health Care Practitioners. Each practitioner is given one chapter in which to share their healing strategies
posted
The fact is that the newby links have grown like topsy and it is a brave newby that will sort thru this very long list.
Maybe we could have keeblers links as another sticky, just like she has posted them above. If they are just added to the newby list they will be lost. Each grouping should have a specific explanatory name for easy reference.
She has spent a great amount of time helping people and we would hate to lose her. But sometimes it is necessary to pass the torch, or take time off, or concentrate on one's own life.
Don't be a stranger keebler. We value you and hope your health will improve. Let us help you if you need it.
Posts: 8430 | From Not available | Registered: Oct 2000
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You may post the link to "Quick Links to Popular Topics" or ONE link to something specific the person needs.
Thank you for your cooperation!"
Keebler.. It's not nice to post private conversations.. but maybe I should post the one where I asked you very nicely to tone it down. You ignored that and I had to be very blunt.. as above.
Then you "called me out" publicly instead of keeping your PM's OPEN as they had been so we could discuss it privately.
PS.. One link IS enough as long as it contains the other links as in the Quick Links.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- LymeToo,
As the PMs were directed to me, it's up to me to share or not. Nothing was said to keep it secret.
Other ASKED what happened. Others offered explanation that were not accurate, so I was forced to correct that. There is no reason to not share the actual turn of events. I had hoped not to have to but, it was required to clear things up.
As for your first PM to me, I had no idea that was from you as a MODERATOR. I thought it was just your opinion and I simply differed with my own style. You did not say it was as a moderator at all, so it really never occurred to me.
The link for the physical referral for Turn the Corner Foundation is not in quick links, nor are many others. the point is that if someone asks a specific question as they also ask for a LLMD, they should be able to get that question answered or a link to detail about it. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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quote:Originally posted by lou: The fact is that the newby links have grown like topsy and it is a brave newby that will sort thru this very long list.
Maybe we could have keeblers links as another sticky, just like she has posted them above. If they are just added to the newby list they will be lost. Each grouping should have a specific explanatory name for easy reference.
She has spent a great amount of time helping people and we would hate to lose her.
Very true, Ms Lou!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
As a newbie, I did not go pouring through link after irrelevant link,which others thought might be relevant to every single newbie but not necessarily relevant to the nuances of my case. I was not up to that.
I sought information for details that were specific to me. Then, when questions arose as a result of that research, I looked further. I can't imagine that others are much different.
The fact that Keebler responds with a thorough answer, with links tailored to the question being asked by the poster is invaluable.
The newbie (or not) doesn't have to click on each link if they don't want to. They know this, as they likely are not martians.
The idea that the "veterans" always know how a "newbie" is thinking and feeling is flawed.
Posts: 797 | From New York | Registered: Feb 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Carly,
It's good to know that a tailored reply worked for you. I hope you found what you needed. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- LymeToo,
I did not consider those private as they were a new policy of sorts - if it was meant to be top secret, it should have been noted. Otherwise, its a record of conversation that I can share if I choose.
But, I did try to not share the details - I replied privately to those who posted and only offered my own words and account.
I kept quiet about all this -- until forced to when misinformation was posted. As a former journalist, I just can't let misinformation stand. Clarity works better for me. The only way to do that is to go directly to the source.
The truth, actual words, are often best to clear up questions. One should never be afraid to have anything they say or write see the light of day. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Keebler's help is still HELP that is needed.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
To all,
Maybe I shouldn't have started this post! I was just concerned for the welfare, and well being of someone that has helped a lot of people. But now that I have, it's time to move forward.
We are taking away the main purpose of this very helpful site, which is helping others.
Keebler, we all love you, and I think you should now that by now! Politics will never go away, and I hope you don't either.
I took the time to read all relating Emails that got us to this point. I think both sides have valuable points, I hope we can all come to a resolution and put this to rest.
With that said, Keebler, please continue posting and helping others that need you very badly. You are one of the most helpful contributors we have here.
We also have so many other very educated Lyme Members, and I thank-you all for taking the time to help us. I've been an active member of Lymenet for more than two and a half years, and compared to a lot of you, including ``Keebler'' I feel somewhat of a novice. I try my best to do as much research as possible, and then sure it with others.
The point is, we all need each other! Lets put our energy into helping each other.
Sometimes it's healthy to have these type of debates, I can only hope it makes us a stronger family!
Also, from time to time I like to thank the Moderators for all that they do, so, ``Thank You''!
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Keebler - I just want you to know that you have helped me in my treatment. You are one of the people that got me one step closer to the light at the end of the tunnel.
Group hug
Posts: 2232 | From USA | Registered: Aug 2009
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penguingirl
Frequent Contributor (1K+ posts)
Member # 28688
posted
Amen to that!
I don't know what I would do without this site. Everyone has been very helpful and caring.
-------------------- Posts: 1204 | From USA | Registered: Oct 2010
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
May by the grace of God,,and the friendship of this family of Lymenet members continue forever!!!
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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