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Hopefully farewell to Robin/Sara
12 Replies
Gabbie - October 29

I tried to be polite with my post to Robin and we seem to have be rid of her but now here comes Sara. I almost wonder if it's the same person since only one "appears" at a time. I've tried to be patient and mind my manners, but I too have found myself becoming annoyed with the insistent lyme posts appearing in between all the informative ones written by the many wonderful people I have "met" here on the fibromyalgia forum. Thank you to Gavin, Islandguy, Lisa and others who have also asked that the posts about lyme stop. Applause for you Connie for pretty much telling Robin/Sara to get lost. Maybe a little less "nice" and a little more "take your lyme information elsewhere" will work. If you (Robin/Sara) are indeed "support group leaders" I suggest you concentrate on learning how to truly help others because from the way you push your opinions on us, I think you are completely lacking in the category of compassion. Shame on both of you.

 

skidoo - October 29

Well, as much as I find the posts annoying, too, otherwise they are harmless and I have to say that you, Gabbie, have no right determining who can and can't post on this site. So leave it alone. A simple solution is to ignore the posts you don't like or provide a counter point without attacking the other person . You can also notify the moderators (??) of this site if something is offensive.

 

Gavin - October 29

I think an arguement can be made for these posts being harmful as people not yet fully educated or knowledgable about FM come here only to see the most recent post is someone claiming that all FM patients have Lyme's. It is also whats known on computer posting sites as spam to repeatedly post the same information. What is the medical evidence of this claim? Lyme's does not even represent in Australia as we dont have eoithert the Ticks nor the host mammals for this disease. So how does that possibly explain my FM? Whilst I agree with the merit of your reply skidoo I think you can tell people that the shouldnt be posting when opinions they a purporting to be factual information are in fact opinions only and have no basis in medical fact. People with littlew to no knowledge of FM come to this site for an introduction FM and gain communitiy support. These posts are counterproductive and I have taken you advice previously and where appropriate have reported these posts as in poor taste. I support freedom of expression but to have an opinion purported as fact and try and dissuade "newbie's" that they dont have the syndrome they have been diagnosed with is counter productive and in poor tatse, it should be eliminated. Chin up. Gavin

 

JJ1 - October 30

Good point about having fibromyalgia in countries where Lyme Disease doesn't exist. This would disprove the "everyone with fibromyalgia really has Lyme" theory. I don't agree with Robin either. It is ***possible*** that some people here have Lyme, but to be telling everyone that they have Lyme is downright wrong and could be dangerous since the cure for Lyme is long-term treatment with high-powered antibiotics. The over-use of antibiotics is resulting in resistant bacteria. I have a daughter who is now dealing with an antibiotic resistant staph infection on her skin and it is pretty scary. Also, everything I have read also states that the antibiotics for Lyme don't always work, particularly in later stages. Robin and her friend make it sound like you can start antibiotics and all your fibromyalgia symptoms will magicaly disapper. I have written before about my friend who has advanced Lyme disease and she is nearly debilitated by the disease. Antibiotics provide her no relief. This has been going on for over a decade for her. She has suffered from near blindness and periods of being wheel chair bound. Having a diagnosis of Lyme is not a blessing.

 

Gabbie - October 31

skidoo. I find it surprising that you would find my post out of line after reading all the ones about lyme from Robin/Sara. One of the things that we need to avoid is stress, upsets etc. which I (and I am sure others) have found the lyme posts to be. I don't think that is harmless. I provided a counter point as you called it quite awhile ago trying to explain to Robin/Sara why I felt the lyme posts were unfair. I believe I had as much a right to express my feelings as Robin/Sara believe they have the right to talk about lyme on a fibro forum. And yes, now I will ignore the posts and continue to ask questions and share my thoughts with the many fibromyalgia sufferers here looking for support from people who have the same thing.

 

stevekc - October 31

I feel that the time has come to support the people that disagree with these Lyme posts because the way i see it . Lyme sufferers should use there own forums and let us FM sufferers get on with debating our own subject in peace ,not that robin and co are being offencive ,but it would be better for all concerned if they just left us alone .Instead of sidetracking , derailing and confusing the issue to no ones advantage ,only succeeding in becoming a hindrance . Instead of trying to be of help to one another's individual needs. It's progress
that we are looking to make ,surely?

 

skidoo - November 1

I believe that Robin's intentions are good. She says she was diagnosed for years with fibromyalgia and recently found she was misdiagnosed and has Lyme. In addition, she has responded quickly to the standard treatment for Lyme so to her, this must seem like a miracle, to be so suddenly relieved of symptoms that had been aggravating her for years. Think how you would feel if your fibro symptoms were suddenly gone. There is a good chance there are others in the same boat and I can understand her desire to get the word out. The fact that she is talking about her Lyme being misdiagnosed as Fibromyalgia is very relevant to this forum. What is causing problems is the way she is telling everyone -- insisting that they don't have Fibro and have Lyme instead and repetitively posting the same info over and over again. So, while she may be irritatating and we wish she would change her methods, what she is saying is relevant and could help someone. I think it is inappropriate to attack anyone's character and make unfound accusations (someone suggested she worked for a drug company that treats lyme). In these types of forums it is appropriate to challenge WHAT people are saying but not to launch a personal attack against the individual saying it. So while I agree that the repetitive posting is irritating and I find it misleading to post that everyone here really has Lyme, i cannot condone the personal attacks on her or telling anyone that they are not welcome in this forum. As forum members it is not our position to say who can and can't post here.

 

Fantod - November 1

Bravo!

 

LBB - November 1

Personally, I have had a least 3 tests for Lyme Disease... all which were negative. I just choose to ignore these postings as irritating as they are. Obviously this person has nothing better to do with their time than posting the same words over and over and over.

 

coop - November 2

Skidoo, you are not really compassionate, fair, and understanding. We are really mentally deficient. I used to think like you till I found out that I(like you) was just plain nuts!Come read all about it at the forum: http\\\u_r_nuts.org

 

lisa1 - November 5

Hi everyone, when I first started posting it was to speak with others and share the effects of this dreadful disease and to gain knowledge to help myself and to share my knowledge to help others. How comforting it was to find people who were just like me. There are many here on this forum who do not have to label themselves support leaders, they are just here to listen , help and guide. As if this disease was not confusing enough, we continually have two people constantly telling us that everything we have been told after many years of pain and searching is not really what we have at all. Not to mention the suffering we have and still are going through. I do not feel it so much as an attack as it was a reaction to the continued fustration of being told that all of us and our doctors are wrong. Let us all continue the good work of helping each other, that is waht this forum is all about. Let the ney sayers and the people peddling an "instant cure" know we appreciate but don't really care.

 

Gabbie - November 5

Lisa1. "Comforting". Your one word describes this site and the people who come here perfectly. Where else can we go to find people who suffer with their own pain and yet, are so willing to try to help others. It has given me help that I didn't even realize I needed when I first stumbled on to this forum. Thanks to all of you.

 

SarahO. - November 11

Shame on you, Gabbie.

You are lacking in compassion letting people on here stay in pain when they could get better. No, not everyone has Lyme but some do.

The same person? No, we are not the same person.

I put my phone number on here to be available to anyone who needed to talk.

And you know what? ONE MEMBER
here has contacted me and is going to see a Lyme doctor- so not everyone here is as narrowminded as you are.

I hope she gets better and has NO PAIN anymore- like me and Robin.

Lyme disease is WORLDWIDE by the way. And I had it for YEARS just like Robin before I got rid of it for good.

Thank you, SKidoo, I have never in my life been treated as rudely as I have been treated in this forum.

Very sincerely,
A person trying to help-
Sarah
1-831-662-2895

 

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