Re: Regarding 2nd BEB site
i am totally lost on what you are saying, delaine. is it about the other website??
Re: Regarding 2nd BEB site
It is stuff that happened a long time ago when I first started posting and then again about a year ago. It's water under the bridge and if you haven't received email trying to influence your thinking in a negative way about the foundation, maybe he has stopped doing it. He had some ideas to offer that worked for him and several other people he knew and I tried them all and they did not work for me. But his approach was sometimes abrasive and offensive to me and to some others that forwarded his email to me and to Judy. He meant well I'm sure. He often used alias to post as a different person and then disappears. The other situation would need to be addressed by Judy or the BEBRF. Some people still post who got some inappropriate email in the other situation, I'm sure of that.
Re: Regarding 2nd BEB site/delaine
who is HE? that you refer to? this referring to the bebrf as a scam is upsetting. do you mean because they haven't come up with a cure yet? that genetic research survey was one of the best things they ever did. has anyone heard back from them on this yet? or are we supposed to know the outcome of this research ?
Re: Regarding 2nd BEB site/delaine
I can't say on the grounds I might get sued or in deep you know what. Like I said his intentions where probably very sincere, just didn't agree with approach. I'm delighted he found something that worked for him, no one deserves this stuff and we all deserve relief. Like I said, I tried it and all the other suggestions from the people he mentioned and none of them worked for me. If I can find the name of the products I'll post them because they might work for others. That is the good and bad news of this crazy disorder, somethings work for some but not for all. One I do remember from someone he put me in contact with was Rutuss which is prescription, but has guafenisen which is plain Robitussin and is in non-drying Sudafed which have helped some with BEB and fibromyalgia. The lady also said she had to work in buildings with no carpet and avoided perfumes and dyes. The other 2 were multi-market products which I will have to look up and were expensive. One did have a money back guarantee which I did use and got my money back.
Re:2 other things and everything I've tried
I found the other 2 I tried that was recommended and didn't help me. Super Blue Green Klamath Algae from Cell Tech (it had the money back guarantee. I tried this in May of 99 and the cost was $178 and I did get some of that money back. The 3rd thing was Ambrotrose from Mannatech, very expensive and did not help. I tried the prescription Rutuss and it didn't help, the plain Robitussin, and the non-drying Sudafed, Benadryl, Grapeseed, had my metal fillings removed, wore cotton clothes, I was already using unsented everything, wore the Scopolamine patch, took Neurontin, Periactin, Zoloft, Bilberry with Lutein, Oregon Grape Root, Aminoacids, Noni made by Lametec, Moisture Eyes, Acupuncture, Ultra-violet light, energy work and tried to stand on my head. I've had a partial myectomy and Botox about every 3 months. I am now on a 18 day herbal program that so far has cost about $400 because it put one person I know into remission. I go to the chiropracter and massage therapist every 2 weeks. I take 1/4 mg of Klonopin 4 times a day which seems to help more than anything I've tried. I practice stress management. I've seen at least 8 doctors since I first had symptoms 3 years ago. I started a support group for Middle TN. As you can see I am open minded, determined to try anything, turn over ever stone and spend whatever it takes and NEVER GIVE UP HOPE! The minute I find something I will post it immediately. Determined to find IT....
Re: Re:2 other things and everything I've tried
Hi Delaine:Of all the things you've tried I was interested in your reference to acupuncture. Through the last five years I have had a great deal of relief from my arthritis in my knees from acupuncture where Celebrex, advil etc. have not helped at all. Where would the acupuncture sites for blepharospasm be?
Re: Re:2 other things and everything I've tried
I've had it from 2 different people and once for several months and it did not help my BEB. They put needles every where. We've discussed it before and I can't think of anyone who has had long lasting results that helped. Dang it!
Re: accupuncture
Hi Ruth,
I also tried accupuncture for my BEB in the beginning. I just made 5 or 6 visits. The first time that I went it seemed to help for a short time that day (a couple of hours) and then the symptoms came back full force. After that first time, I never noticed any change at all so quit going. The first time that it was done, she did put needles all over but specifically the ones that I thought helped were at the temples.
She looked up specific sites for Blepharospasm in a book that she had. The sites changed each time that I went in, though.I'm sure if you have a good accupuncturist, they would be able to find out where the sites should be. Wouldn't hurt to try especially since you've had good luck with your arthritis symptoms. Shirley in Arkansas
Re: Re:2 other things and everything I've tried
I tried acpuncture for several months ,from three different people. Did not get any help from these sessions, and they placed the needles everywhere.My insurance would not pay for any and they were quite expensive.
Re: Regarding 2nd BEB site/delaine
Delaine ... Please correct me if I'm wrong, but ......... I think there are two surveys at issue here. First came the survey from the scam artist who used several aliases and some of us recall, but of course you cannot go into that again.Next was the survey that I believe Kathy is thinking of; and that was the one sent out through snail mail shortly before this last conference. It was authentic and sponsored by the BEBRF, or at least backed by them. I know that I received, and filled out, such form. No, Kathy, I don't believe we've heard any results of that survey yet. I understood that it was to be the basis for research and that possibly we won't hear anything for some time. I hope this clears things up a bit for you, Kathy. Maybe only muddied the waters, but I tried!! Must get back to watching figure skating! Sally in North Idaho
Sally
Sally I was just addressing the first question from Kathy (about who is "HE" and the email I received from him which was well intended and not insulting. Those came later. I also wanted her to know that I had tried all of his suggestions plus a bazillion others. You know me I go on and on. Thanks for addressing the second part so well.
--modified by Delaine Inman at Sun, Jan 13, 2002, 11:16:58
Re: Regarding 2nd BEB site/delaine/sally
thanks for replying on this one. i don't know about the "scam" one, was that the one where he was dividing everyone into 2 groups on this bb? i was new to the bb at the time and some of his ideas were both outrageous and made sense if you were a physics major or an electrical engineer. at that time i was trying also to think of everything that could possibly affect my eyes.
sally, are you going to try the fl41 research thing that was mentioned in the newsletter for photosensitivity?
Re: Regarding 2nd BEB site/delaine/sally
Hi Kathy,I called about the trial research when I was first informed of it by either Catherine/Colleen/Coleen (I think it was a person beginning with "C"). Can't recall exactly why it wouldn't work for me, but seem to remember that I had to get to Salt Lake City within a very short time, which was impossible at the time. I really wanted to participate and Salt Lake City is a "doable" destination from here. Are you considering it? The light problem is so painful, I think I could manage the spasms if light didn't hurt so much. Sally in North Idaho
Re: Regarding 2nd BEB site/delaine
then you must be talking about tom who was in florida. he does not have beb anymore?? i remember his home had to be evacuated because of a flood. the same guy who told us to take off our jewelry, not vacuum and stay away from powerlines. and the filling thing.
i thought you and dee were both talking about this "uncle phil"?
so the woman you know who is in remission from these herbal remedies has you trying the same thing? can you tell us what any of those herbs are?
so both tom and uncle phil are on this other beb site.?
Re: Regarding 2nd BEB site/delaine
No I wasn't talking about Tom or Uncle Phil. We've got about 4 subjects getting inter-twined here. I don't think Tom was one of Steve's alias's. I'm glad Tom is doing well and I hope Steve is too. I don't know who is on the other BB. Sorry Phil is not doing well. Hope Dee doesn't stop posting here. I love her dearly. I'm too busy to do both and this one works for me. The person in remission notified me not to send her notices of meetings because she had been in remission since 1988. She got Botox in Atlanta in a study and took Herbs for one year from a lady in Denver. I'd rather not say what I'm taking until I see if it works. I had to call her before the first day was over because I got sick as a dog. TOO MUCH! Anyway, I cut back and am doing better with not feeling so bad, but no change in eyes. The person in remission said it was a very gradual improvement but after one year she had no symtoms and only has rare episodes of eyes feeling tired if she is over doing it or stressed out. She works, drives and feels normal. Hey, wouldn't that be great. I'll keep you posted.
Re: Regarding 2nd BEB site
I can only handle one website myself. I have only been on the bb less than a year so I have no idea what went on in the past but am starting to get an idea. I would be furious if I received any type of offensive material when I am here for support for a horrible, awful, disabling condition. We need to build each other up in our moment of weakness, not tear each other down. Thanks for your input, Delaine, and thanks for being there to help me out when I've needed it. So glad things have worked out for your daughter. I pray you are physically able to handle the additional responsibilities.
Kelly
Re: Regarding 2nd BEB site
Thanks for the history, Delaine. I am very happy with this BB and appreciate its connection to the BEBRF. I think having a Moderator is important for any serious BB to keep things on track and to keep an eye on the sorts of things that are being discussed. It is very interesting to read about different experiences people have with the same Botox injections and a great place to share information.Lyn
Re: Regarding 2nd BEB site
Hi Delaine,
I love it when you get on your soapbox! We do all have to follow our own paths and they will all be a little different. What is compost to some is a garden to others.You ramble splendidly! Shirley in Arkansas with a frosting cap on. Glad hubby got home as we both needed haircuts and I needed a frost job.
Re: Regarding 2nd BEB site
Hi Shirley,Roy told me he was hauling a "grooming table" back to Arkansas ... were you the first to try it out, or is it only for the dogs and birds? Glad your hair is getting done again. You sound in such better spirits now. That is great to see! Sally in North Idaho
Re: Grooming
Hi Sally,
I think one of the big reasons that Roy came back home was to get his hair cut. He is such a cheap-skate. ;-)
I cut his hair and Scott's and Roy did mine and since James won't let me cut his anymore (I wonder why? something about a little eye problem and scissors) he went to the barber so all the humans are groomed. I'm afraid that the pets have been somewhat neglected though with everything else going on. The yorkie needs a bath and haircut and the collie needs brushing and the parrot could do with a wing clip. The cat is also unhappy because her best buddy just went back to college. She's been roaming around the house and yowling mournfully.And the table that Roy was talking about is still sitting out in the garage. I'd have to glue a non slippery surface on it if it were used for a grooming table. Shirley in Arkansas who needs to get to bed as we have to get up early and take my dad in for a doctor appointment.
Re: Regarding 2nd BEB site/Delaine
Delaine, your opinions are worth more than 2 cents -- at least 5 cents I would say. :-)I can see the topic of Phil has raised some strong emotional responses and I can't really blame those of you who were insulted by objectionable e-mail. I was not a recipient of such mail, had I been, I would certainly feel the same way. What would have surely been in order is a sincere apology to all those who were insulted by the offending trash, I assume such apology was never forthcoming. I'm very happy with this BB, we are so lucky to have it and owe gratitude to the people who made it possible. The BEBRF may not be perfect, but does the best within the confines of their limited resources. On a personal note, just caught up with the BB after lapsing a few days and realized that you had your share of problems again. I'm happy the problem with your daughter sort of resolved itself. I hope this is going to be a better year for you and for all of us, because WE ARE WORTH IT!!
That's my opinion, which is worth about 1 cent. Christel in Ca. who is just emerging from her 'after the holiday depression'. I wonder if lard and nutmeg work for depression too. :-)
|