posted
Pauline, He made up fictitous people to have conversations with on the forum.
I feel sorry for him, but he also makes me mad because this lyme disease stuff is high stakes business, and we don't need a strango messing around with us.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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As a patient with a MS diagnosis (since 1990), but thankfully now under the care of Dr. P in CT I post on www.msrefugees.proboards82.com and would welcome ANYONE to join in...
there are MSers over there that also suffer from Fibro, Lupus type symtoms, Brain Fog, low body temps, etc. all the usual suspects!
After a bit of resistance from some bloggers the Administrator set up an entire section called "OTHERS" ABX and is very open to all information that is out there...
You'll find bloggers from the Cpnhelp site posting regarding their overwhelming success with antibiotics treating Chlamydia Pneumonia.
I seem to be kind of alone and could use anyone's company trying to get the difficult word out regarding borrelia. The resistance is also felt on msrefugees, but I do get people asking questions.
Please don't be shy if you're not a MSer...I personally believe that if the dots were connected it's all one big BAD bunch of buggers..of course I included all the co-infections
As for you Pauline, thanks for trying to help, and letting us know how resistant mainstream thinking really is..
Happy healthy New Year, tori
Posts: 158 | From PA | Registered: Oct 2006
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posted
Tory -- I read emails from a group, [email protected]. It's a very interesting discussion about the efficacy of the naltrexone medication. (www.ldninfo.com). Folks here are trying it for lots of symptoms, including alleviation of MS. Many people here also know or believe they have Lyme. You might find some supportive people here to go join you in discussion on the site you mentioned.
Posts: 13171 | From San Francisco | Registered: May 2006
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Those of you who think LostCityAgent is the one responsible for getting people banned from MedHelp are WAY off the mark.
He was banned himself, several months ago, after suggesting Lyme to several patients. Plus, several people thought he was "acting" like a doctor. Well, he is very intelligent and highly educated.
There are at least two people there, one of whom is Vega, who complain bitterly about anyone who repeatedly suggests Lyme, saying things like, "You think everything is Lyme."
I was the brunt of several of the complaints, as I posted to patients on the Neurology forum who had neurological symptoms that were consistent with Lyme.
Well, DUH.
Where else are those patients going to post their symptoms when the doctors don't know what's wrong with them....the mental health forums?
Oh, that's right, many mental health symptoms are caused by Lyme.
The anxiety level of some of the people who think they may have ALS or MS is extreme. And when they post about panic attacks, anxiety, depression, and insomnia, that only reinforces a possible Lyme diagnosis.
Some people post to the anxious ones that they should believe their docs that everything is okay, but the anxious ones just keep posting their problems and looking for answers.
Heh, like some of the people here at LymeNet.
Be careful, and use your head. Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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I was nearly banned from immunesupport for trying to direct others to lyme resources -- I became so frustrated that I stopped posting there.
Actually, if not for immunesupport, I probably STILL wouldn't have a diagnosis ... I was posting on the fibro boards there, and a few people suggested lyme... I connected the dots, and indeed am CDC positive.
Bless you folks who have the wherewithal to keep posting in other places despite the resistance -- it really does make a difference.
Personally, the frustration became too great for me, so I stopped doing that.
The layers of lies, misinformation, resistance, denial, and all the rest of it around this disease are just absolutely mindboggling!
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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posted
Nearly banned from immunesupport...gorgeous. Just what do you think we all deal with here? Do you know who runs that site?
Next we'll hear that someone was banned from www.i-was-bit-by-a-tick.org for trying to suggest the possibility of Lyme. I'm getting persnickety. Or should I say pers-tick-ety?
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
Carol in PA - the one who was complaining about me posting about Lyme Disease posted as "Between". I saw JCmcc just posted to someone that Lyme should be checked into. He seems to contradict himself some, but I think that maybe that he is trying to be careful not to get kicked off Medhelp again. I wish we could send a letter to Medhelp with all of our signatures to make a point.
Posts: 144 | From Connecticut | Registered: Sep 2006
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posted
I've been told by some that mainstream drs. say those with Lyme and especially those on the internet are in a "Lymecult."
I can't believe that they say that about us! If they really believe that, maybe that is why the drs. and owners of those sites are kicking anyone off their boards who suggests Lyme might be the real problem.
We really have big battles on all sides, don't we? I'm thankful for Lymenet. I found it by doing a google search. Otherwise, I wouldn't have found this support gruop. Kayda
Posts: 582 | From midwest | Registered: Nov 2006
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posted
Actually, Robin, I *don't* know who runs that site -- my naivete over-rode my objectivity and general suspicion of the world-in-general in my need to find help and answers with my declining health last year-- needless to say, I'm a bit wiser (and more jaded, sadly) now.
I could go look up the info right this minute, if it really mattered to me -- but what matters now is that I've found lymenet and found a good llnp, and I'm on my way to much better health.
All the politics and lies do make me sad, though. Imagine how many lives are being ruined, right this minute, by lyme....
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
After hearing from all of you about other websites that are antagonistic towards Lyme posters, I feel pretty lucky that I have not run into that much resistance on the support forums I have visited.
Also, it is one thing for the people on the forum to have conflicts, but quite another for the board itself to start censoring the posts. Because then sick people going to those forums will NEVER be exposed there to any information about Lyme. CRIMONY! That just makes me kind of crazy.
Hey, maybe what we should do is post on a bunch of OTHER forums about avoiding MedHelp because of their intolerance of anyone who suggests Lyme Disease. I belong to a couple of chronic pain support boards, and I could post it over there. MedHelp can't do squat to stop us from doing THAT.
I don't think complaining to MedHelp will do any good. Their minds are made up.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Are Wormser and Dattwyler the moderators at MEDHELP.ORG?
(or their proteges)
Posts: 2557 | From home | Registered: Aug 2006
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