Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Same as anywhere else, some good stuff, maybe some not so relevant to what one may be seeking. As she did here, BettyG is over there working hard to help with education for newcomers.
[edited for clarification] I can't look at most sites across the web as my inner ear whigs out my eyes. Contrast, layouts, necessary ads, etc. - Sadly, MDJ is just one of most sites that I can't explore but my overall sense is that they have a lot of bases covered.
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It's a bit hard to find the lyme link as MDJ has many forums. So, this goes right to it:
posted
As one of the Senior Leaders of the Lyme Group at MDJ - and of other groups found there...I can give some insight...
Very large site with multiple forums covering many many issues, with many members belonging to multiple groups.
Dedicated Group Leaders that put in hours to do their best to find as much info as possible, help, etc for those who ask...
Roy and Alon have worked very hard to create an environment that is not only supportive, but working toward health and healing.
Yes it is a large community, and yes some do find it difficult to navigate at first, but many stay because of the info and connections that they make. And for some it is these connections that ultimately save them.
And sometimes there are squabbles...but there really isnt anyplace where there aren't. With our Lyme group - when all is said and done, we expect everyone to act like adults, and come back to the table and find a way to come to some sort of peace...Group leaders are NOT above such expectations...
And with Lyme Rage - Yes we have had to put each other in check at times...no shame in that. We are not perfect.
If ya dont like what someone says, or just don't like someone, fine, but be mature about it. We are all there for the same purpose - information and support.
To be honest, I know we have caught some crap from members here and a couple of other forums about bringing Betty on as a Leader.
In my honest opinion, I think that kind of behavior is petty, and wickedly childish. Sure we had some growing pains with Betty - but by approaching the situation as Mature adults, and discussing the issues - we continue to prove that bringing Betty on has benefitted the MDJ Lyme Forum - as she has SO much to offer, especaially for newbies needing information...
We are a group that keeps the big picture in mind - helping people - help each other - and help ourselves...
And if you were to take the time to read how much so many have learned - and how so many have turned their illnesses around - you would find us rather effective...NO ONE can boast 100% - lets be real and honest...
I will also add this...
I find it utterly dispicable that ALL Lyme forums cannot overcome so much petty crap and grudges and work together as the Community that we truly are...
At MDJ Roy and Alon have begun helping us do that there - by adding forums that combine multiple dx's...and we do have many members who frequent many other forums - trying to spread info and to keep learning..
I can also say,that the number of members who have publicly and privately expressed their gratitude to us (Lyme) leaders for being able to keep the petty, childish behavior to such a minimum...and I have seen it in other groups myself (not here as I have not frequented this site too much in quite some time - cant even remember my original login)...
It is truly sad - and certainly NOT conducive to our cause and the need for the Lyme community to be so separated by the behaviors and conflicts between individuals...we are ALL better then that...
So having said that...I will step out now...but not without adding this...
If ya dont like Betty - Fine - That is your business - but dont discourage others from coming to our Forum - We certainly would not Disrespect Any of you in such a way...
And that could be keeping something important from someone - and that is NOT ok by any means.
At the same time - don't disrespect MDJ either - Roy and Alon are 2 great guys who have done so much for so many...I've said it there and will say it here...They both will have a special seat in heaven for all that they do for their members...
We respect what all of you do here - whether or not we know each other, whether or not we get along...we respect all that you do here...all I ask is to be given the same respect. Our goal is the same...
Hopefully one day we can see past the garbage - and come together in numbers...
Hope you all are well
Christine
PS - this was a general statement - not targeting anyone who posted...
PSS - WHY is it so hard to TYPE? I hope I caught all my typos I type too fast for this text box or something...
-------------------- I Know What I AM I Know What I AM Not I Know What I Have I Know What I Have Not Posts: 3 | From CO | Registered: May 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- cmany,
I apologize if my comments about layout were seen as an insult. I was more conveying my sense of sadness that I was not able to read more there - and explaining why it was, then, that I could read here.
I will go back and rephrase that to say - because of my own problems, sadly, I can't check it out for more than a couple minutes. Most sites on the web have similar layouts. I just wish my eyes and ears were not so sensitive as it's very limiting.
I intended to compliment BettyG by saying that she works very hard at MDJ. It's true and it is a compliment.
She is a caring person who works very, very hard to help others avoid unnecessary pain and pitfalls.
Yes, all the lyme - and health information sites - can work together. Not everything at any one site works for everyone yet, together, we can all provide a balanced educational sources with the main goal of helping others.
Thank you for your work at MDJ. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Don't worry...I think you were fine. I don't think Cmany was addressing that towards anyone.
MDJ is a great group and I have met some great people there and have gotten some helpful info there as well. It is a good group...I haven't seen a lot of fighting or anything.
I belong to both lymenet and MDJ. I love both groups for different reasons. I like some of the features there and some here. I think both groups have a lot of great information to offer.
Sometimes I find more info there than here and sometimes I find more info here than there. I think people can benefit from both groups. No need to belong to one or the other. You can join as many lyme groups as you want. Then you just get that much more info and support.
So to me the more the merrier LOL!!
Take Care Everyone!! Pam :-)
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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No need to apologize - I was not insulted - and I knew exactly what you meant...
Believe me there are days I have issues there - and everywhere for that matter cuz my eyes are acting up - or the fog is more of a haze...
And that is why I added the PS - it was a general statement...
One thing I am known for is not sugar coating anything - and being blunt and straight forward - I am after all a Jersey Girl (North) - and no amt of time here in CO will ever take that out of me...(should see the locals when I loose my sh** LOL!)
Having said that - I will explain myself a bit...
I know that we (Group leaders mdj) have been attacked by members from this site for bringing betty on board...others forums too...
Their identities have been with held from me - because I can be rather aggressive toward those who attack my own...I can readily admit that...so keeping me in the dark about the who's enables me to be more diplomatic...which in the long run is for the better...for all...
But my posting here was really about the first part...insight to our forum...plain and simple -
But its who I am to give that "shout out" that I added in the end - they know who they are...but still trying to keep it general...trying
I have frequented quite a few Lyme Forums - and the crap and garbage spewed and spread by some members about this site and mdj - can really get under one's skin...no pun intended...
I think and feel that these are two of the better forums out there...and I also know realistically - there are those who lurk in the shadows of both - whose intentions are not so nice...and have even found those who for some reason feel the need to pit groups against each other...so...its a message to them too - from all of us...
I mean honestly, jerks are jerks, and we have all had our fair share - heck I have found some bumped from nearly every Lyme forum - and the last place I found them - they were bragging and keeping track - and statistics on it...
Anyway - obviously a sore subject...
Again - no offense taken...and no offence meant either...just Represent'in - plain and simple...
I know we both share members - and am in NO WAY looking to start wars...
Keeping the peace - and wishing luck and love as you find your paths to health...
Christine
-------------------- I Know What I AM I Know What I AM Not I Know What I Have I Know What I Have Not Posts: 3 | From CO | Registered: May 2010
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posted
Thanks for clarifying why you posted this. I didn't mean anything bad either. I just like this forum and don't plan to go anywhere else. Been here a long time.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Again, sorry if I offended anyone - I can be somewhat Gruff and Grr at times (dealing with docs have contributed to that )...and I shouldnt have come off as such...I do get defensive - not just for my home (mdj) - but also for all of us...
Didn't want to upset anyone tho...again was generalizing...
OK - do I need to switch from UBB code to HTML or something??? My key strokes are not being caught...
-------------------- I Know What I AM I Know What I AM Not I Know What I Have I Know What I Have Not Posts: 3 | From CO | Registered: May 2010
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posted
That is so weird that you are having trouble typing here! I wonder what the deal is with that?? Is it only happening on this site?
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Thanks everyone. I had not heard of it before and then people began mentioning it. I will check it out for myself. Ann - OH
posted
I think you have been doing well on mdjunction, Christine, and Betty too. I have been on some of the fibro groups from time to time, letting folks know that my fibro turned out to be Lyme. I have had some decent conversations there and some fibro folks went ahead and pursued a Lyme dx -
Posts: 13116 | From San Francisco | Registered: May 2006
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Good Job all.
We have many opportunities to inform the public. Lyme is not just in us.
It is being found in MS patients, ALS, Fibro, Alzheimers, Autism, Morgellons, etc. etc.
We can slip in a word on these sites for the public-we don't have to keep it to ourselves.
You would not believe how many people have no idea they may have Lyme.
Some get very angry at even suggesting they may
have Lyme. Or they get like me very angry it was not diagnosed. Either way----
Campaign for the masses. I know they are out there.
You never know you may save a life.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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)...and I shouldnt have come off as such...I do get defensive - not just for my home (mdj) - but also for all of us...
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