Hello Jellybeany and Danielle

Discussion in 'Fibromyalgia Main Forum' started by Pamela123, Sep 17, 2007.

  1. Pamela123

    Pamela123 New Member

    Oh Wow, they took us down a fourth time! We must be on to something. Will post the last (deleted) post. Figure out what we're doing wrong? Hugs to all of us - this is for real!

    Here's the last one-

    pamela123





    [ edit | delete ] Hi Jellybeany and Danielle 09/14/07 03:38 PM

    Well, they took our post about our Symbion progress down again (third time now), so I guess we won't be able to "talk" over here anymore about it. What a shame. I guess we're on our own now. Thanks for your input and encouragement - I've enjoyed the exchange and the friendship more than you know. This is such a lonely disease and it was nice to have some real support from you two. I wish you both every success in fighting this condition - I know that's the outcome I'm aiming for!

    Pamela


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    jellybeany


    Not surprised but disappointed 09/14/07 08:48 PM

    It confuses me, plenty of others are talking about things they have found helpful, oh well. I've been so encouraged by my progress that I won't let it get to me! But it is sad. I will be emailing you often Pamela! I got to know you through this board and for that I am thankful!

    Jellybeany

    Best of luck to Danielle


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    sleepyinlalaland


    I don't get it either 09/14/07 09:04 PM

    and I would appreciate an explanation as to WHY the post about Symbion was deleted.

    I read it with interest because I have TWO daughters with major IBS pain (as well as other probably-related issues). I suffered terribly also in my teens and 20's. Fortunately, mine has abated but I am always looking for something that might be helpful for the daughters. So, I was quite interested in your experiences. I went to their website, and this particular probiotic does sound unique in its field.

    So MANY products are discussed on here...why was THIS one taken down? (it's not a multi-level marketing product is it?...that, I would understand).

    Anyway, glad I caught it before it deleted. I'll have the girls give it a whirl and decide for themselves.


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    danielle


    puzzled 09/14/07 11:30 PM

    Hello,

    I don't know what is going on either. I may e-mail the site to find out what the problem was. I read the rules and don't see the problem.

    I've had fibro since 1998. I've tried numerous things from bentonite clay, to threelac, to the makers diet just to name few. I guess valcyte is ok to discuss even though it may be a carcinogen and potentially dangerous. It's also very expensive and hard to get at this point.

    I can honestly say that I don't get my hopes up that this will help me since so many other things i've tried have not. I just felt it was worth a try. I have felt better on this than anything else I've ever tried yet, but don't know if it will last. Hopefully it will help my ibs if anything.

    I work for a state health department as you can see in my previous posts. I just wanted to see if anyone else was having positive results. Iwant to fel better. I guess I'll find out on my own.

    Danielle


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    pamela123



    [ edit | delete ] Hi Sleepyinlalaland! 09/15/07 12:07 PM

    Hi Sleepyinlalaland! Symbion isn't multilevel marketing and from what I can tell, is the only product they sell. It apparently was developed by two Fibro/IBS sufferers from the story on the site. So that can't be the reason. Anyway, just wanted to let your daughters know from the experience we all have had over here to start out on the minimum dose (i went up too quickly and got constipated). Konsyl psyllium husks got me straightened back out though and the company gives fairly good directions about how to take it.

    I wasn't going to post over here again, but since I see you're over here, have changed my mind. We're not breaking any rules and are just here to offer each other support since we're all taking it. I've seen several other people taking it get their posts taken down too and not come back, but maybe they're reading and just not posting. Anyway, just wanted to say hello to you! Pamela


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    pamela123



    [ edit | delete ] Hi Danielle 09/15/07 07:32 PM

    We've been on it for almost two months now and just keep getting incremental improvements (fatigue is almost a memory), so don't lose confidence. After years of doctors, we simply went the line of self-research/self-help (thank God for the internet!)and are so glad we did. We're doing really well and hope you are too. Thanks for being here for me and I am here for you too - go girl! Pamela :)


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    sleepyinlalaland


    Pamela123 09/15/07 10:18 PM

    THANK YOU for continuing to post re. Symbion. I am a sceptical person (to the exreme!) so my interest in Symbion is not a naiive this-is-it kind of thing.

    But, what has specifically caught my attention is that this may be a probiotic that is more effective at by-passing the stomach acids...and able to "present" in the intestines...and therefore may be more effective than other probiotics.

    It may not be THE anwer (especially since I have 2 even MORE sceptical daughters who may not give-it-a-go), but i really appreciate that you brought attention to this posibly-helpful product.

    THANK YOU


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    danielle


    Hi Pamela 09/16/07 09:36 PM

    I woke up feeling pretty good today. Maybe we should just not mention the name of what we are using anymore. That may be the problem.

    I know questran was making some people well on this board but I don't think they are here anymore. They are out living life again.

    In time we will know if it will restore to us a better life or not. I'm hopeful.

    Danielle





  2. jellybeany

    jellybeany New Member

    OKAY, I WAS JUST GOING TO LEAVE QUIETLY BUT CHANGED MY MIND. I HAVE BEEN A MEMBER OF THIS BOARD FOR AWHILE BUT DID NOT POST BECAUSE I DID NOT HAVE MUCH TO POST ABOUT! WAS TRYING A LOT OF THINGS RECOMMENDED HERE TO SEE WHAT WOULD HELP AND SINCE NOTHING DID, I NEVER POSTED! BUT HOW SAD, NOW THAT I FINALLY FOUND SOMETHING I TELL OTHERS ABOUT IT AND AM CALLED A SHILL. HOW COMPLETELY REDICULOUS. I BELIEVE THIS THREAD WAS ADDRESSED TO ME AND DANIELLE, TOO MUCH TIME ON YOUR HANDS? I APOLOGIZE FOR SPEAKING THE TRUTH AND NOT FOLLOWING THE PROPER "FORMAT" FOR SHARING WHEN SOMETHING HAS HELPED. WE'LL JUST KEEP IN TOUCH AWAY FROM THE SKEPTICISM. OH WELL!

    JELLYBEANY
  3. Danielle

    Danielle New Member

    Check out the profiles for the posters on this discussion. Someone doesn't have fibro pain. The question is how would they know if it helps or not.

    Danielle
  4. bigmama2

    bigmama2 New Member

    why are you lying?? you said you have not posted about Symbion on any other message boards. This is a blatent lie. I just looked at your posts on another board (about IBS). You have several posts there about Symbion and the user name is the same- "pamela123". and the dates are about the same as your postings on here.

    so are you telling me there just happened to be ANOTHER pamela123 posting about Symbion on a different board at the same time as you were posting about it on here?? please don't insult my intelligence.

    I have no idea if Symbion is a quality product or not. and right now that is not even the point. People should be honest and ethical on this board.

    bigmama2

  5. bigmama2

    bigmama2 New Member

    I just wanted to say HI, and I wish you the best in healing. I know you are a completely legitimate member here, who has health problems, and who is just trying to find ways to get better.

    I wish all of us with CFS, fibro, and other serious health problems can find healing!!!!!

    we have to keep trying new healing treatments (supplements, or medicines, or massages, or whatever) in our quest to get better.

    take care!!

    Bigmama2
  6. Danielle

    Danielle New Member

    I can see why people are skeptical. I've tried so many things I forget all of them. I've also paid more for other probiotics than this one too.

    I did feel better than I had in along time with this product but time will eventually tell if it's working or not. Like always. I may have just been having a good week.

    I don't suggest anyone rush out and purchase it right now. I am just testing it out and probably won't post about it anymore unless it truly helps.

    Danielle
  7. Andrew111

    Andrew111 Member

    Hi Danielle. I'm shopping for probiotics and found this old message. More than a year has gone by since your last post in this thread. What are your thoughts about symbion after your testing?