Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
439 as of now!!! Keep them coming......
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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bettyg
Unregistered
posted
abx ... fantastic; I READ YOURS LAST NIGHT.
her site was really giving me problems; could only read 10-15 then it would post all the computer programming on the text!!
i reported it AGAIN to her pc technical folks!
if by chance you/anyone else get in ...
would you see if they posted OR NOT my MEMORIAL TO KARL ..........., 34, who was buried yesterday.
i copied his obituary and posted statey's comment about his death within 1 yr. and she was pursuing the lyme fight.
big thanks to anyone reading this or who goes there since i can't get anywhere on her site! frustrating.
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bettyg
Unregistered
posted
....483 now including these 2:
...06 former OLYMPIC SKATER
...MANDY HUGHES from under our skin, who stated that lyme means
LISTEN YOU MUST EDUCATE
PLUS several MDs have signed too of the 15 messages it allowed me to read ....
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
We're now at 578!!!! Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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bettyg
Unregistered
posted
..655; even a small-town CONN. newspaper editor wrote in saying he featured a lyme article about UNDER OUR SKIN and has NEVER HAD SO MANY EDITORIAL FEEDBACK EVER!! he encouraged to have a show!!
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
688...I just posted this:
Lyme Disease has one common denominator that NO OTHER DISEASE in this world has.
ANYONE CAN GET IT.
That's right, anyone in any state and most other countries can get Lyme Disease and become disabled, thier lives ruined, by this catastrophic illness. It does not discriminate. If you have any contact with the outside world, or anyone who does, you can get Lyme Disease.
My entire family has Chronic Lyme Disease. My little boy suffers with ADHD, aches, pains, dark circkes under his eyes, social issues, behavioral issues, small stature, asthma, you name it. My husband and I have gone from upper middle class, productive members of society to a total drain on society, on welfare, food stamps, losing everything we have worked our whole lives to attain.
I live my life in bed. Previously I was an excellent, sought after therapist who spent my life helping others get theirs back on track. Now I can't even take care of myself.
Please bring this issue to light. More than any disease or illness you could possibly highlight on the Oprah show, this is the one and only that can effect EACH AND EVERY MEMBER OF SOCIETY; EVERY SINGLE PERSON WATICHING YOUR SHOW.
Please, please use your powerful voice to help save us. This disease is spreading like no other; education on prevention needs to be done, research on cures and accurate testing are imperative, and the medical field needs to understand that this disease is both REAL AND DEVASTATING.
Thank you for giving us some hope of reaching those who need to know about this.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
betty, I've tried many times to get in. I filled out the info they wanted and they sent a confirmation but they told me that my password wasn't right.
So, I changed my password and still they're telling me the same thing. It is very frustrating to say the least.
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bettyg
Unregistered
posted
loco, boy do i sympathize with you! it's happened to me too that they would NOT accept my password.
i can read 10-15 replies only on there.
my 1st 2 posts; they cut me off within 2" going down an rest is garbage/computer programming codes!!
use the contact me at bottom, AND REPORT WHAT IS HAPPENING TO YOU!
harpo's moderator gave me online there the link for TECHNICAL SUPPORT; i've heard NOTHING back on 2 posts to them, and all my garbage is still there!
for all her billions of $$; she has an antique computer software that needs updating big time!!
i wander too how many PEOPLE SHE HAS AS MODERATORS/TECHNICAL SUPPORT???
loco, thanks for trying!! i'm going to recopy the memorial obit i posted on karl, 34, who just passed away. i copied the MEMORY BOOK LINK there without thinking.
NO LINKS ARE PERMITTED DUE TO VIRUSES/WORMS, ETC!
loco, GREAT JOB POSTING!!! i could read it all in normal type vs. all caps! my eyes send you a big thank you! god bless you!
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posted
Finally got through and I don't even know why or how. Probably my fifth try...they felt sorry for me.
724!
One interesting post: Jared, featured in UOS, was already on an Oprah show - she was very generous to the family then...
ok, a give-away to a Lymie audience: pills and PICC lines and insurance coverage for all of us - lol
Posts: 13117 | From San Francisco | Registered: May 2006
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bettyg
Unregistered
posted
i just posted KARL's obituary again, but LEFT OFF LINK FOR HIS MEMORY BOOK; i'm sure that's why they didn't post it.
hopefully, 725 WHEN they post; GOOd NIGHT ALL!
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bettyg
Unregistered
posted
... 814 now; less than 200 for 1000 !!!
HOT OFF THE PRESS NEWS!!!
OPRAH COMMUNITY SITE IS CORRECT
ellenluba
LymeNet Contributor
Member # 1707
posted 03-03-2009 06:13 PM
Hi folks,
I just spoke to Under Our SKin for clarification.
We need to KEEP POSTING AT OPRAH'S COMMUNITY BOARD AS WE HAVE BEEN DOING.
That's because the strategy is that we are writing so that the PR firm for Under Our Skin has leverage in encouraging Oprah's company to give us a show.
The above site is the only site where the PR company can know how many letters are sent to Oprah.
Below is the, slightly abridged letter that the PR firm, On the Marc Media, has sent out to us.
Ellen
________________________________________________
POST FROM UNDER OUR SKIN/ ON THE MARC MEDIA:
"First of all, thanks to everyone for emailing Oprah. You've done an amazing job!!!
"We keep getting questions about where to post -- in order to reach Oprah.... please spread the word and explain to people "why" we are asking people to do it the way we have instructed.
I understand it is not the normal protocol. But there is a method to the madness -- hopefully this email will straighten up the confusion.
"The reason we want to post all these messages on the message board at this link:
is because we want to be able to gauge the response!
We CAN SEE WITH OUR OWN EYES, how many people are posting messages.
Dr. Oz and Oprah's top producer and researcher will see it.
"Yes, the Harpo people {Oprah's production company) are right --
typically people give show ideas at another area of the web site but we need to be able to gauge the response.
If you do it the other way, we can't tell Dr. Oz and Oprah's producers that we know, that 1000 people have written to them, because we will have no idea how many people have written him.
This is the only way, we can see for ourselves how many people are posting messages. This is why we are asking people to do it this way.
.... we are asking people to spend most of their free time and energy getting friends, family members, doctors, church members, co-workers, Lyme organizations from every country in the world, to post to the above link because we need that number to be BIG!
Lyme is now on the front page of Oprah's community page because of all their hard work.
Thanks by the way! It's a very big deal!
*****MOST IMPORTANT ---
MESSAGE BOARD LINK (PLEASE MOST IMPORTANTLY POST HERE - THIS IS WHERE WE NEED TO SEE BIG NUMBERS)
03/03/2009 22:43 Top Canuck Lime Green Ribbon Posts: 737 Group Leader
I want to take a minute to thank Kathy from the bottom of my heart, and on behalf of ALL of the people who suffer with Lyme..
Wikipedia:
Kathy Fowler is a medical reporter at Washington, D.C.'s ABC affiliate WJLA-TV.[1] She has been reporting on medical breakthroughs, the healthcare system and everyday health issues affecting American's lives for more than 10 years.
Fowler's ability to simplify complicated medical topics and tell compelling human interest stories has earned her a National Emmy Award. She has also earned a regional Edward R. Murrow Award for her reports on the black market sales of human organs in the Philippines.
Fowler has also been nominated for several Emmys, one of which was for telling her own personal story about being a passenger in a fatal car crash when she was a teenager. For the past two years, she has spoken to more than 10,000 students in the D.C. Metro area about the life long impact of reckless driving.
Fowler also traveled to South Korea to follow the first American paralysis patient through a stem cell transplant.
Before joining ABC-7 News in June 2001, Kathy reported at WJZ-TV in Baltimore, Maryland at NBC-17 in Raleigh, North Carolina and at WBNS in Columbus, Ohio.
Kathy is married and has a son and a daughter.
Canuck Wiki: (what I remember so if anything is incorrect, Kathy let me know)
Kathy was in a horrifying car accident when she was around the age of 19. She wasn't found for 8 hrs and fought for her life while stranded in a field with life threatening injuries.. During this time, she was probably bitten/ infected with Lyme and Co.
She did have a bullseye rash on her knee, and when she was in the hospital, her injuries were more 'important' of course, and they did see this rash, said it's 'probably Lyme' and gave her a short course of antibiotics..
It was ten years later that Kathy started to have problems prompting her to seek the truth. Neurological aspects of Lyme had started to tell her she wasn't okay.
I believe she had been given a diagnosis of legionnaires at the age of 25 and when she really started having so many neurological problems along with immune system deficiency (which we all seem to suffer from) she was told to pursue the possibility of Lyme.
People had mentioned it from time to time, it struck a cord and she started researching. Much like the rest of us, she soon learned about this illness and how detrimental it can be as she too suffered with Chronic Lyme..
Much like me, she knew to pursue a story when she was told to leave well enough alone. There was something THERE.. A truth that had to be discovered and told..
[QB] So, Kathy soon helped shed the Lyme light on an acquaintance- Dr. Oz. She prompted him to do a show on the film Under Our Skin, and about Lyme Disease...
Thanks to her, we now have a chance at this illness finally getting some recognition by mainstream, the media, the general public, the world.. Sometimes it takes Oprah and her platforms to better us as human beings. So be it!
I am ever so thankful for all you have done for us Kathy.. This without a doubt- should win the Nobel Prize for the most controversial diseases of this century.. You have brought about change and have been recognized for your former achievements..
With this we give great recognition, and I know you will be remembered as one of the key players here. [qb]
Bless you and may you be healthy for years to come
******************** Group Leader Please take this advice as personal experience and not that of a medical professional. Sometimes experience is what makes us learn and help one another. Take the pieces you need, and always question, ask, with an open mind and heart... Christina *******************
03/03/2009 23:01 Top Bettyg Green Ribbon Posts: 319 Member
Kathy,
My heartfelt gratitude for helping ALL OF US CHRONIC LYME/CO-INFECTON PATIENTS by speaking to Dr. Oz on behalf of yourself, and thousands of internationally!
You opened the door with Dr. Oz on our HUGE PROMOTION OF FLOODING OPRAH'S COMMUNITY PAGE WITH OUR STORIES!!
God bless you for pursuing your illness, and thank God you were found after your terrible accident.
Bless you too for educating teens on driving. 2 teens died yesterday in my area!
Keep up the good work Kathy! WE ALL APPLAUD YOU in helping make LYME become a houshold every day word!
BettyG Iowa lyme activist
KATHY IS THE ONE WE OWE DEEP GRATITUDE FOR SETTING UP DR. OZ RADIO SHOW WHICH LED TO LETTERS TO OPRAH FOR A SHOW!!!
please take the time and go to mdjunction site above joining, and thanking kathy.
canuck sent kathy the direct link there so kathy can read this SURPRISE THANK YOU GIFT!
posted
.... 910 ... now!! 90 until 1000!! then 1500
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bettyg
Unregistered
posted
... 947 now!! 53 to 1000; then 1500 !!
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bettyg
Unregistered
posted
.... 997 .... 3 to 1000; 1500 here we come.
i posted this after above, but MODERATORS ARE OFF AT MIGNIGHT EST!!
Oprah and Dr. Oz,
HOT OFF THE PRESS last week!!
The latest book, 3 of 3 series IT'S ALL IN YOUR HEAD by PJ LANGHOFF titled:
THE BAKER'S DOZEN & THE LUNATIC FRIDGE!
Has junk science shifted thru the Lyme disease paradigm?
526 pages discussing the IDSA's lyme guidelines, etc. and including OVER 1000 LINKS of info galore on what the IDSA infectius drs. on the panel have done for work: patents, grants, you name it!!
PJ discusses too UNDER OUR SKIN, Pam Weinbaugh's CURE UNKNOWN recent book, and many other things.
I have just started it, and it takes me 5 minutes per page to read the small print for someone like me with LOW vision and try to read/comprehend it after 39 years of CHRONIC LYME DISEASE!
Yes, I've had chronic lyme for 39 years; 34.5 years MISDIAGNOSED by 40-50 drs. with every illness/symptom you can imagine!
Please do a show on UNDER OUR SKIN lyme documentary by Andy Wilson and then have at least TWO follow-up shows because you can NOT begin to discuss the lyme war controversy in 45 minutes only allowing for your commercials!!
Under our Skin deals it like it is and finally the things UNDER THE RUG are brought out into the open and laid into the public's lap.
Oprah, if Stedman or Gale were to be diagnosed with lyme and/or co-infections, you'd be there promptly calling the best drs. in USA and internationally who know the most about lyme disease.
You can afford to help Stedman and Gale and still have many millions and perhaps billions of $$ to help other lyme folks with
EDITED ... with a malaria-like coinfection--- babesia.
note: i can't edit oprah's ONLINE but i can correct my oversight; i get this wrong every time betweens babs and bart; i can't remember. thanks pam!!
But we with chronic lyme, the MAJORITY, can not afford the HUGE OUT OF POCKET $$ for our LLMD, lyme literate MD appts., treatments, driving out of state to llmds where they do NOT exist in our states, lodging/food, labs, and the costs go on and on especially those with IV antibiotics.
* Majority have lost: * their jobs; * their health insurance on what they might pay for NOT lyme related; * their marriages/divorce; * custody of their kids; * homes; * bankruptcy; * homeless; * and the ultimate ... SUICIDE since they can no longer go on due to 24/7 pain, have nothing to live for anymore since it's all gone, and deep depression!
We want our voices heard and shown the RESPECT we deserve instead of the ignorant drs. mentality of, "IT'S ALL IN YOUR HEAD"!!
We want empathy, understanding, a shoulder to cry on or a friend to talk to when we have bottomed out; we don't want anyone's sympathy!
Please do the world a favor and have shows on chronic lyme/co-infections diseases starting with a show on UNDER OUR SKIN lyme documentary.
My heartfelt thanks for doing this Oprah and Dr. Oz!! We so enjoy his shows with you!! [Smile]
ann, NH, stated she had posted this on a SCHOOL site, and kids galore with lyme are now passing this around and sending letters too!! great idea!
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bettyg
Unregistered
posted
FLASH UPDATE!! IMPORTANT!!
03/05/2009 11:58 Canuck Lime Green Ribbon Posts: 787 Group Leader
TODAY IS THE DAY GUYS AND GALS!THEY ARE LOOKING TODAY AND TOMORROW AT THIS BOARD- RIGHT NOW THEY ARE LOOKING!!!!! ****************************
IF ANY DAY WERE IMPORTANT IT IS THIS ONE>> POST WHAT YOU CAN NOW!
In the next four hours--DO IT! *********************************
I am so please with the responses but will say again- we almost have that many in this group alone..
So pass it on, beg your family and friends if you have to- send some guilt, whatever it TAKES! I am not ashamed of guilting someone into something at this point...
posted
...1106; wow, the momentum keeps building!
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bettyg
Unregistered
posted
...1173 ... now
my guess why we're not on HOT TOPICS is because a few people met in NY last thursday to discuss an under our skin/dr. oz/oprah tv show. NO decision so far, and being strongly considered.
so my guess it is in connection with last week's meeting, and them telling us constantly ... DON'T post there; post on show area!
KEEP YOUR FINGERS/TOES/and anything else you can think of for YES for our lyme tv show!! xox
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bettyg
Unregistered
posted
... 1189 now; almost 1200 and 300 more to go to my next goal!! yippee!
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bettyg
Unregistered
posted
...oprah, 1201 posters now.
1 new poster did state about the man shooting his pastor due to lyme and about the chimp!
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posted
hm... maybe not SUCH a good idea to bring up those two.. makes it sound like we're violent and hurt people, quite horribly if not fatally
why would people want to 'help' people like that, ya know?
we know the truth about lyme, but to those who know nothing of the illness and what it can cause, i don't think it's a good idea to bring up such violent instances...
there are more of our stories that are likely to get the right kind of attention...
....
~Green~
-------------------- ...trying to be the coffee bean, not the egg. Posts: 420 | From East Coast | Registered: Jun 2008
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bettyg
Unregistered
posted
Replies: 1,215
someone just posted entire article of the shooting above with all the lyme info in it.
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bettyg
Unregistered
posted
..1229 ... less than 250 to meet my goal of 1500 then let' go for 2000 !! we can do it gang!!
many touching stories there... [Smile]
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folks, we are running out of gas; can we get another 241 to make 1500 posts there? i bet we can since it's the LONG WEEKEND; ok, it's a regular weekend for you. lol
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