|
Post by Brian on Jan 31, 2006 13:36:19 GMT -5
How many of any of you have donated blood to the blood bank? Why or why not ? Would this be a good idea for US ? Would it bring forth any sugestive formulas that are unknown? Would it show anything? Is it an avenue for desrcibing what we may be expieriencing?
|
|
|
Post by curry on Jan 31, 2006 16:45:38 GMT -5
I wouldn't do it and in my opinion I don't think it would show anything. Hell, they can't even find something when they are looking for it!
|
|
|
Post by jody on Jan 31, 2006 17:53:42 GMT -5
carrie,i agree with u but just think of the people that give blood, that have this.today i went to my Dr.all of my blood work is all messed up.my protein is always low,wbc,low ,monocytes,high.... hgb,low... hgc low,....rbc,low,... glucose,high but I'm diabetic....i would like to know how many have these kind of reading.my Dr. knows i have a skin disease.she said that it just has not been diagnose yet.
|
|
|
Post by Brian on Jan 31, 2006 18:58:11 GMT -5
I'd say if evertone here who has sumptoms of this disease were to give one pint of blood every six weeks to their local blood bank....it would be more likely to turn some sort of results rather than 20 post here like I've been doing.
|
|
|
Post by questionhair1 on Jan 31, 2006 20:03:53 GMT -5
bks27:
When I sneeze or cough, I cover my mouth. It's just out of consideration to other people. I appreciate the same from others too!
When you think about who needs a blood transfusion, it's probably someone who's been in an accident, or is seriously ill. Since we don't know what this is (scientifically) - I think it wouldn't be right to take chances with other people's health.
Maybe it would be perfectly safe to donate blood. But even if there's a one percent chance that donating blood could infect someone, I wouldn't do it.
And yes, there are probably people right now donating blood who shouldn't. Meaning well, but not knowing.
If we want to help other people, we can find ways that won't risk people's health.
QH
|
|
|
Post by Brian on Jan 31, 2006 20:22:05 GMT -5
There is no risk in this ....AT ALL...they screen and do testing on the blood before it goes into the bamk for 39 different elements,,,,besides The doctors that have looked at us have said ....AND I QUOTE......THERE IS NOTHING WRONG WITH YOU THAT I CAN SEE !It would be no fault of ours if there was to be a problem with this.....Although there could be some developing research done to investigate what agents are responsible for this >!!!! AND LORD KNOW>>>WE WOULDN"T WANT THAT WOULD WE yes !
|
|
|
Post by questionhair1 on Jan 31, 2006 20:38:52 GMT -5
There is no risk in this ....AT ALL...they screen and do testing on the blood before it goes into the bamk for 39 different elements,,,,besides The doctors that have looked at us have said ....AND I QUOTE......THERE IS NOTHING WRONG WITH YOU THAT I CAN SEE !It would be no fault of ours if there was to be a problem with this.....Although there could be some developing research done to investigate what agents are responsible for this >!!!! AND LORD KNOW>>>WE WOULDN"T WANT THAT WOULD WE yes ! A. No risk to the donor, but to the recipient? Maybe. B. Do you still believe that doctors are infallible? Completely knowledgeable? C. I want answers, but there must be a safe way. Time to go out and feed, there's a beautiful world and some special animals out there. It's good to get away from the computer and this mystery. I do admire your "roll up your sleeves and let's do something" attitude. Just prefer to be cautious. QH
|
|
|
Post by Brian on Jan 31, 2006 21:27:41 GMT -5
I will tell you this ......There are no facts to state that anyone has died of this to the contrary of AIDS or HEP "C".....these diseases ARE a Direct route to death.My mother died this past oct after dealing with HEP C since bypass surgery in AUG of 85 from Methodist hospital in Houston Tex....If your afraid to stick your neck out because someone might get itchy or can't sleepall night .....then theres many spineless people who are willing to yap about all this but do nothing.This disease will never get solved with post from this site because everytime someone has an idea "Oh no..we can't do that...because...." what ARE you willing to do ....what are you willing to risk.....callisus on your finger tips?...stock in ray o vac batteries? Just WHAT do you propose to take action ON? will it EVER happen....Or do we need to find some more litigation on a research forum site that we can keep ...copy and /or cut and paste....how much relief have we gotten from any of that .......All I hear and see of late is the preceding...But nobody actually is doing anything....ANd when something is suggested...there is always a reaon for why we shouldn't or why it would be bad to do it..come on people get a spine ...go out on a limb .....be a leader...take some initiative....take a chance....don't be afraid....TRY and find out but none of that here...I.ve been talking with Mary from ...well you that claim to know so much will know who Mary is ..there should be no explaining from me who she is from her today......... Dear Brian. I really am frustrated that this is going so slow. I have been working on this huge mess nonstop since August, 2001. We are fighting an entire, established "system". Medicine is in a very sad state as you know. I have tried to get help from the TX Dept of health, spent 7 months emailing them after talking to them on the phone. They did not "get it", but they will. Senator Cornyn has receievd info from us, which was hand delivered by a Washingtion DC Lobbyist last year. He is your best hope in TX Did you get the letter to Cornyn I sent last week? See this past info: tinyurl.com/cegvztinyurl.com/c3zsuthe link is so that you can go to my mail and verify the date ... I'm understanding why some of the more in the know people disregard many of these sites as fruitless... You guys and gals need to formulate some sort of game plan and act ...NOW Its what should be on at the top of the post ...HOW TO FORMULATE A GAME PLAN FOR THE COMBAT OF MORGELLONS DISEASE...... But its not that at all .. its more of ...lets find more subject matter and post it ...well don't you guys and gals believe that all that type of collection of researchand funneling are already being done by those who can actully use it to its full benefeits? The ONLY thing that I can say about my comming here is...that I have had comfirmation in KNOWING that there are other people here in Texas the nation and the world that DO have this disease. I alreadt know of a think tank at Oklahoma State U. that has researchers that do nothing nut surf the web in scout of finding vitale informationfor the purpose of advancing their and other studies. I know of one individual from that think tank that come HERE often ..or at least used to....to obtain imformation.I won't even go into that right now...... But JEEEEEZE people.....what ARE we trying to fix here ......surely not the Nixon Library of cut/copy paste and post......if there is anyone here that uses that DIRECTLY then they alredy have retrived such for a purpose that does not directly involve US We ...or this site is a gathering spot for those of us afflicted with this bug to come together as a UNIT to be heard ....or at least it should....its what I hear everyone mention....HOW DO WE GET THEM TO LISTEN?.. I'll tell you how WE HAVE TO SAY SOMETHING AS A WHOLE GROUP..WE HAVE TO DO SOMETHING AS A GROUP But we're not ...so what do you all want to do ......I know I'll get smashed for this ...and it will be more noise made of this than at any point to date...... WE need some organization that will grow.....a plan that we all can and want to act on..... I believe this forum has the ability to become a very large voice...if united...with one cause and a sole reason. We have to point ourselves to that goal and GET R DONE. AS is we are just making circles There are alot of smart brains in this group and I know that there has to be someone that has the ability to see one of those avenues....and bring us all together in a organized matter so as to be heard..... I would like to see this happen soon....like now..... No one is truly possitive that what they bring to this board and who picks it up is actually doing with it what they sayy they are ..... I get more truth from Chas and Mary Barry Minders is another one......that says.... best that we could do would be unite with one cause in one direction and let the country know we exist THERE I"M DONE
|
|
|
Post by Brian on Jan 31, 2006 21:29:54 GMT -5
|
|
|
Post by Brian on Jan 31, 2006 21:38:32 GMT -5
Heres a point in referrence..............
skeptically doing my part Guest Re: shortest path from A to B « Reply #21 on Jan 23, 2006, 10:23pm »
-------------------------------------------------------------------------------- Hey south, You need to talk to C. Carnicom regarding how we will never be heard. He has been dealing with something anyone can blatently see for years now. How much media has he gotten? I don't want to dissuade us all from actually trying to get the attention we so much deserve and require, however, from what I have seen so far with this AND that ( and I am not saying they are related) I just bet we will get the same treatment. Our govt uck fupped so bad. I HATE to say it, but I think the truth will never be recognized. Sorry for being such a skeptic. Still, I will do my part and send out the link as it is just as important to me to get it out there.
|
|
|
Post by Brian on Jan 31, 2006 21:43:58 GMT -5
Leigh Ann Guest Re: shortest path from A to B « Reply #30 on Today at 9:41pm »
-------------------------------------------------------------------------------- Ok, guys and gals, do you remember on my post on "Let's plan" I wanted us to get organized on a State level first and then one person from each state can carry the voice where it counts? Well, my first statement was to find someone that we can find out what their MOTIVATION is, which of course in politics it will be greed, glory and political muscle. Well, as it turns out, I had such a committee fall into my lap yesterday. There is a PAC here in Alabama who goes by the name of Alabama Watch. Well it turns out that this organization is a home grown roots thing that has offices in the State capital, Montgomery, who has been a beacon in defending the right and educating consumers. They have organized hundreds of consumers and brought them to the Alabama Legislature to fight for issues of fairness and consumer justice!! Here is the KEY word. They are soliciting for donations from the Alabama Trial Lawyers for funding due to budget restraints. They have since gone to a voluntary basis until funds can be raised in which to continue their efforts. Here is where THEY need US! here is where her, the director's, motivation becomes OURS. We bolster her pocket and she fights for the issue that is most important for us..... I have contacted her and am in the process of gathering all the data and research for her to see what is happening.
I am still convinced that the only way is for us to get the attention of the federal government, perhaps ultimately through the Accountability Act of the federal agencies by the federal government, is by starting on a state level. I invite you to e-mail her if you want. However, I am going to make sure she hears the crys of ALL of us in this Great United States, notwithstanding our medical profession industry which is falling short of the mark.
Maybe with the network of other committees from other states we can finally get all the information in ONE place, call it ONE thing, fight for ONE cause, and be solid as ONE big ROCK. We can do this, however, it will take a little time and effort. I KNOW that we have enough facts to present a solid argument.
I certainly am not suggesting that everyone stop doing what they are doing to get the word out, but it takes strategy and a plan to truly get our voice heard. I am starting this on my state level and if it is successful then maybe we can use it as a model for other states to organize. It's like starting a new business, you can't just jump out willy nilly and flail from this target customer to another. It takes a "concentrated effort" toward that customer and then to another and so on. It takes "planning the work and working the plan". I know that sounds corny but it is true.
Lastly, (then I will get off my soapbox) don't direct your efforts toward a lame duck. Identify and go after those who are hungry, ambitious and are trying to build a name for themselves. That is who will help us.
Leigh Ann
|
|
|
Post by stupid smurf on Jan 31, 2006 22:27:29 GMT -5
BKS, First I will say I hear you, loud and clear and share a lot of these feelings. Overall, you seem to be an okay, and straightforward, guy.
But there are a couple of things I'd like to comment on, regarding your previous posts. They are just comments so don't go ballistic and lose the message I'm trying to give you.
I feel compelled to tell you that if you are going to introduce this sort of information you need to elaborate on it. This comes across as yet another "I could tell you but I would have to kill you" deal, which I am sure is not your intent.
Also, if know of this person what have you done to recruit them to the cause?
Again, these are just comments which you can of course can take, or leave (and of which you do not need my permission to do so).
Now as far as doing something. You are essentially doing the same thing you are protesting in all of these posts.
You are talking about doing something.
My recommendation would be just Git R Done. If you want to move forward you need to: Take the lead, do a straw man plan, get the volunteers, understand their level of commitment (hours they can spend each week), organize the group, elect team leaders, refine the plan and execute it. And remember successful projects are NOT democracies or there wouldn't be a thing called a "leader". Take input but don't get caught in the self directed work group concept.
Believe me, it's not as easy as it looks, but I would admire anyone to tries it (again). And also wish them the best of luck.
If you need technical assistance in this endeavor let me know, offline, and I will contribute in that manner after the team is in place in moving.
I say this because I have been sucked into the "consulting" role many times on projects that simply never move forward because they are "too hard", thus many, many hours wasted. Therefore, I no longer do work on the front end.
These are just suggestions but I have years of business experience to back up this is the way to do it.
I will remind you again, that I have the means to send out bulk emails (100-1000 in one day) if someone will gather the Title. Firstname Lastname and email address (duplicates already filtered) and whatever form letter you choose to use.
There are already lists on the internet of all email addresses for the Senators / Representatives, State Epidemiologists, Medical Schools, Vet Schools, Dermatological Societies.
Go get them, put them in an EXCEL spreadsheet and we'll send them. ON THE SAME DAY. Then a follow ups AT REGULAR INTERVALS. I will put YOUR email address in the reply address so all inquiries can be answered, or referred, and not fall through a crack. That's a start.
I've mentioned this on several occasions but no takers. It's something we can get done in a week.
Now here's something we can DO and not talk about. The specs are in this post.
Put the following in an EXCEL spreadsheet, duplicates removed:
ColA - Title ColB - First Name ColC - Last Name ColD - email address
50 addresses per page Supply Form letter Supply reply address and display name
I can spend 3 hours a week on this.
Your move.
|
|
|
Post by anj on Jan 31, 2006 22:38:48 GMT -5
I thought of the blood bank too! On the hopes that they would catch what IT is, BEFORE plasma went to recipients. They would COMPARE my records from prior visits and CATCH SOMETHING(S) that's DIFFERENT! I donated for a time about 2 years ago with no problem. I just recently caught this illness (and I know it was due to sanitation/drinking water, near a lake we lived by)...overflowing septic tanks...a recent flood...and nobody ever flushed toilets (trying to save a buck on the poop truck). 90% of the animals were VERY OBVIOUSLY sick too, with the same illness...dogs and cats. Even animals in town 7 miles from us...SAME SYMPTOMS...and where baby Elizabeth lives. I agree something has to be done ...we need to brainstorm and organize SOMETHING SOON. Today my I had my doctors appt. It turned out well. My old doctor was running behind an hour...a good thing... because I SWEAR TO GOD AN ANGEL SENT FROM ABOVE WALKED IN THAT DOOR! SHE LISTENED TO ME! [glow=red,2,300]She said that she would visit THIS WEBSITE and read up on THIS ILLNESS and LEARN WHAT SHE COULD until my next appointment. [/glow] I told her what I thought it was (I. belli) and she said she would find out what she could on that disease as well. She gave me a script for Bactrim which is standard for I. belli infections. I didnt know the the long long technically named med was the same as Bactrim. She wants me to come back in the AM asap to do a SERUM test (on empty stomach). I am so ecstactic that she was so willing to REALLY LISTEN...I will let you all know when I hear something solid. She asked what kinds of tests are used for diagnosing I.belli (she was not very familiar w this illness), and I told her wet mount UV FLUORESCENT and safranin. Forgot about acid fast stain...so many thoughts I wanted to tell her...I asked her to read some of your writings and that many will break her heart ... I was so happy (and crying) she was asking me this stuff! I will keep you posted! ;D ;D ;D Angela (Thank you KIM!) I would tell you her last name because it is SO FITTING...but legal-wise, I better not!! I like you more and more each day bks
|
|
|
Post by frisk on Jan 31, 2006 22:41:26 GMT -5
SS and bks..........break time, Fantasy cyberland is calling. :-*HEhehehe Dr. Frisk
|
|
|
Post by Brian on Jan 31, 2006 22:42:01 GMT -5
Well SS you sound like a willing partner....In every non humorous post I have made,,,,,,,most of those have lins or names of people to contact or they make the suggestion of uniting together........ but I am comming up on a yr with this group and the 3 people that I have told of this site have found it to be "just another tag and peg board" If I cant get any unisome of followers by this friday ...I will be issuing my resignation...In which i will ask to be un associated with this site ....so if we'reoing to do something ...we need to get our act together now !
|
|
|
Post by Frisk on Jan 31, 2006 22:48:34 GMT -5
Sorry for butting in ! This conversation is quite serious so please carry on. Cyberland can wait...... ;DFrisk
|
|
|
Post by Brian on Jan 31, 2006 23:02:40 GMT -5
MEeeeeeeeeeeeOOOOOOW !!!!!!!!!!!
|
|
|
Post by stupid smurf on Jan 31, 2006 23:09:34 GMT -5
Well SS you sound like a willing partner....In every non humorous post I have made,,,,,,,most of those have lins or names of people to contact or they make the suggestion of uniting together........ but I am comming up on a yr with this group and the 3 people that I have told of this site have found it to be "just another tag and peg board" If I cant get any unisome of followers by this friday ...I will be issuing my resignation...In which i will ask to be un associated with this site ....so if we'reoing to do something ...we need to get our act together now ! Well good luck to you. Let me know if you get the goods and you need a tech. I'm sure everyone would hate to see you leave. Don't forget us over in the "low rent" district. F--k Yeah! xxoo Nurse Ratched And to you Miss Frisky..... www.thesoundarchive.com/spsounds/nokitty.wavhehe. Okay, we're just joking around. Sorry for disrupting the thread.
|
|
guest
New Member
Posts: 0
|
Post by guest on Feb 1, 2006 0:41:11 GMT -5
what does this mean
|
|
|
Post by guest on Feb 1, 2006 0:49:42 GMT -5
why can not you people work together? I see leigh ann & bks trying to make things happen and others trying to stop them. No togetherness?
|
|