Topic: RE:ABC ON LYME- PLEASE LOG ON (it's free) AND STATE YOUR EXPERIENCE/BELIEF BRIEFLY
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
only a few have answered-some have answered more than once-for this to have power we need to to have LOTS of people say a few very serious/dramatic/scarey things we have expereinced.
we will continue to be thought of as "nuts" if we ramble and state "facts" that are not true.
those who don't have lyme (or even those who don't KNOW they have lyme) get bored reading long, research based info---bottom line---get the message out with "I" messages-
ex: "this is what happened to me..."
how long not or wrongly diagnosed?
how many docs did you see before getting dx
how did you feel before...after abx?
symptoms before and after
(I couldn't: work-get out of bed-take care of my kids-keep my marriage together
now i : am back to college, work, etc
people will identify with that
remember-5th grade reading level is what newspapers are written at-good or bad-that's reality
anyway-i don't know why i think i can tell you all what to do...it just seems we have a chance to be heard here---ONLY A FEW OF HUNDREDS(THOUSANDS?) RESPONDED-THATS WORSE THAN NONE...
as far as tincups take on this (see her thread) please read the text below and make up your own mind-they have to give both sides. i think it's ok.
i wish someone else could post more (dr. H stated 42 in a video) actual studies that prove ilads point of view. i don't have time to copy them all off the video right now-but i think that post that listed studies was powerful
anyway-read it and hopefully you will go to [email protected] to comment
-WJLA Script-
related stories: ABC 7 Medical: Bathroom Behavior ABC 7 Medical: Type One Diabetes
Anchor: TONIGHT ABC-7 NEWS BEGINS AN ON-GOING INVESTIGATION INTO LYME DISEASE.
A SILENT WAR IS BEING WAGED IN THE MEDICAL COMMUNITY OVER A POSSIBLE LYME EPIDEMIC. THE CASUALTIES: POSSIBLY TENS OF THOUSANDS OF SUFFERING PATIENTS.
KATHY FOWLER JOINS US WITH THE GREAT LYME DEBATE.
Kathy Fowler: TWO GROUPS OF DOCTORS ARE PITTED AGAINST EACH OTHER OVER JUST ABOUT EVERY ASPECT OF LYME DISEASE.... FROM THE VERY DEFINITION OF THE ILLNESS TO HOW IT SHOULD BE TREATED.
Story: REBECCA GRIFFIN COATS HERSELF IN BUG REPELLANT, EVEN IF SHE'S ONLY GOING OUTSIDE HER STERLING VIRGINIA HOME FOR A MOMENT. THE REASON; A TICK BITE SHE SUSPECTS GAVE HER LYME DIEASE. THE ILLNESS LEFT HER MENTALLY AND PHYSICALLY INCAPACITATED.
Rebecca Griffin: "the exhaustion was just incredible."
FOR NEARLY A DECADE SHE DIDN'T' EVEN KNOW SHE HAD LYME. SHE SPENT YEARS SEEING SPECIALISTS SEARCHING FOR CURES FOR HER MEMORY LOSS, MENTAL CONFUSION, JOINT PAIN, STRANGE RASHES AND CHRONIC FATIGUE.
Rebecca Griffin: "I had a database of doctors I was seeing and every six weeks something else was whacking out on me."
"hey you"
IT WAS FAMILY PHSYCIAN DR. SARAH FLETCHER WHO FINALLY DIAGNOSED REBECCA WITH LYME DISEASE.
Dr. Sarah Fletcher: "People are just suffering and it's getting mislabeled and misdiagnosed."
DR. FLETCHER AND INTERNIST, DR. NORTON FISHMAN SAY REBECCA'S STORY OF STRANGE SYMPTOMS AND MISDIAGNOSIS IS MUCH TOO COMMON.
Dr. Norton Fishman: "When they come in and they say I've been to John Hopkins I've been to rheumatologist the endocrinologist, I've been to the neurologist and finally the psychiatrist and they all tell me I'm crazy I say no you've got Lyme disease.. go no further."
THIS IS WHERE THE BATTLE LINES ARE DRAWN. ON ONE SIDE DOCTORS LIKE FLETCHER AND FISHMAN WHO BELIEVE LYME IS AN UNRECOGNIZED EPIDEMIC. THAT IF IT ISN'T DIAGNOSED EARLY AND TREATED PROPERLY IT CAN PROGRESS TO MORE SERIOUS AND DEBILITATING STAGES CALLED "CHRONIC LYME". THAT OFTEN NEEDS TO BE TREATED WITH HIGH-DOSE LONG TERM ANTIBIOTICS.
THE OTHER SIDE OF THE MEDICAL COMMUNITY, IN FACT, THE MAJORITY, SAYS LYME IS NO EPIDEMIC. THAT CHRONIC LYME DOES NOT EXIST AND THAT LONG TERM ANTIBIOTICS ARE DANGEROUS IF NOT POTENTIALLY FATAL.
Dr. Henry Masur: "There are healthcare providers who are taking advantage of desperate patients and offering them therapies that we know do not work, offering them therapies that we know are harmful."
DR. MASUR SAYS 30 DAYS OF ANTIBIOTICS IS ENOUGH TO KILL THE BACTERIA THAT CAUSES LYME AND THOSE WHO PRESCRIBE LONG TERM ANTIBIOTICS ARE "ROGUE" DOCTORS PRACTICING UNSAFE MEDICINE.
Dr. Henry Masur: "This minority of poorly trained physicians who feel passionate, if they really felt passionately about this they would collect their data so that we could see their data we could see what they base their diagnosis on."
DR. FLETCHER, A BELIEVER OF CHRONIC LYME AGREES SHE IS "PASSIONATE", PARTLY BECAUSE THIS BATTLE IS PERSONAL. SHE LIVES IN A LYME ENDEMIC AREA WAS DIAGNOSED AND DEBILITATED WITH LYME DISEASE 7 YEARS AGO. SHE SAYS LONG-TERM ANTIBIOTICS SAVED HER CAREER, HER LIFE.
Dr. Sarah Fletcher: "There was a 5 year period of time when I was on antibiotics I could think better and then when I came off the antibiotics I couldn't think as well and then when I would go back on the antibiotics my thinking got much better."
WITH NO CONSENUS AMONG DOCTORS ON THE DISEASE, THE PERVASIVENESS OR EVEN THE TREATMENTS, PATIENTS ARE LEFT IN THE MIDDLE WITH UNANSWERED QUESTIONS.
AFTER 3 YEARS OF ANTIBIOTICS REBECCA SAYS SHE'S GOT HER LIFE BACK. SHE DOESN'T THINK SHE'LL EVER BE "CURED" BUT SAYS WITH CONTINUED TREATMENT THE DISEASE IS NOW MUCH MORE MANAGEABLE.
"Are you doing better? I think I"m doing better I can hold you... Yeah"
Kathy Fowler: NEXT DURING our ON-GOING INVESTIGATION WE'LL LOOK AT WHY LYME DISEASE "TESTING" CAN BE SO INACCURATE.
FOR MORE INFORMATION ABOUT "BOTH" SIDES OF THIS GREAT LYME DEBATE LOG ONTO OUR WEBSITE AT WJLA.COM IF YOU WOULD LIKE TO MAKE A COMMENT ON THIS TOPIC. EMAIL US AT [email protected]
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
bettyg
Unregistered
posted
up for more input from us all...
read other post for SPECIFIC GUIDELINES in how to address facts!
IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
we're up to 13 really good replys ...pleaase add yours. thanks. and spread the word to those who are not on this board. thanks. lp
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
thanks for the "up" better...i posted on the other thread and am reposting here just in case.
i don't like double threads...but this will all be history in a week-lets try to get the word out now:
(my other post) posted 23 September, 2007 10:34 AM -------------------------------------------------------------------------------- daystar-are people posting their comments and are they being held back? i can't believe there are only 13 or so...
i tried to pm you but your box is full
i agree with you-i feel awful disagreeing with tin- i hope she will forgive me.
i just feel like we FINALLY have a chance to be heard and it seems like we are blowing it..lets not forget the oprah thing either..she is asking for stories
and i think below is a summary of what others have given for tips on what to say:
from cave: Write 'the unsent letter' to us here. Ranting about your frustrations. That's what support groups are for. God knows I did that enough of that, back in the day.Then write a short letter outlining just how wrong the IDSA's position is. Send that to ABC (remember-if you go to the abc page you just register -free-and comment there-not a snail mail letter)
From tdtid... So when writing, it's easy to enforce our side in a short and brief manner and as far as IDSA, just pose a question to them asking what ISDA would do for those suffering long term since their solution give NO HOPE of cure.
i think it might help for p.ervine to jump in and some of the others with writing experience-anyone know how to contact her?
tin...can you see our point? please don't be mad at me. lp
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
The river lady.. Ms. Kayak said..
"i agree with you-i feel awful disagreeing with tin- i hope she will forgive me." and.. "tin...can you see our point? please don't be mad at me."
How DARE you disagree with me!
I'M KIDDING!!!!! I'M KIDDING!!!!! I'M KIDDING!!!
HA!
You make me laugh sweetie pie. You are just too darn sweet... but I think that is one of your most special traits. Not to worry about me. I wouldn't be upset with you for doing something I KNOW you are VERY VERY good at, which is...
Helping Lyme patients all across the country.
And that goes for Daystar (a top notch advocate) and all of the folks pitching in to help with this project... especially our LymeNet members.
To address one of your questions below... and I am steady analyzing this situation as it moves along.. however I am only going by experience.. NOT from having all the answers.. much less the RIGHT answers...
My GUESS is there will be more emails going to the station. First because the registration process they require to post slows some folks down. (Brain thing)
Second.. because perhaps like me.. when I saw some of the posted comments.. they were really hard to read (eye thing all jammed up in one block) and.. truth be known... because they are talking about things I will not associate myself with.. and can't.
Since you asked my opinion... yeah right..
I stay clear of anything I can't absolutely prove to be fact. I have to. I MUST remain as credible as possible and if I can be shot down by not being able to back up what I say 100 percent... I am done in this business.
(No problem for me as I could use a big long vacation.. but if I was unable to help with our situation to try to make things better.. it would break my heart.)
For example...
I NEVER talk about Plum Island. You can check the 50,000 posts I've done and all my letters and articles. NO mention of it.
NOT because it isn't true.. but because I can't prove it. I don't know if it is true. Plus it is kicking the government in the head without being able to back it up. In my opinion, we have enough problems without adding a conspiracy theory to the mix for ME to have to prove.
Sooooooo.. for that reason I avoid it... as do many others who are trying to help us.
Some of the other topics I steer clear of.. just for your information.. is the mention of Lyme as the cause for divorce. Again.. it might be true (and I suspect it is).. but with a national divorce rate as high as it is... that is not a thing I need to be mentioning in order to prove Lyme is bad stuff.
I also steer clear of the munchhowsers syndrome... spelling sorry... NOT because it isn't important.. but simply because I can't prove it AND don't know the subject well enough. I have NO personal experience with it either.
And let me tell you.. all of those things make me freaking angry to even think about them.. so I am not unsympathic at all. I just can't "prove" them. I hope you understand.
Bottom line...
We already have scientific proof that the IDSA is wrong.. so I stick to those facts. And I beat them in the head with them every chance I get... which is the FUN part of the job.
``````````````````````````````````````````````
Now.. I babbled on and on.. as usual... but also wanted to mention.. if you care for my opinion again.
What's that? You said YES? OK...
My crystal ball is saying that although we all can't believe it after what we've seen over the years..
It is possible the IDSA members CAN read and write. At least some of them can.
My concern, therefore... especially since we know the IDSA has responded angrily to this report... is for everyone to watch their back.
Recently they have been taking time to respond to things that don't make them shine like an annoying bumper in the sunlight.
I know they have marched into newspaper offices demanding equal time to counter others opinions... the bully approach.
I know letters with documentation have been sent to reporters with their trash articles and studies trying to prove we are a bunch of nut cases and are wrong.. and the reporter is wrong for sharing our side.
This action pits patients against the enemy.. who happen to be doctors!! And doctors with fancy titles behind their names... who SHOULD be credible.
The reporter in this piece states they are getting a lot of responses. Since the IDSA members.. some of them at leaast.. and their lug nut followers can write.... you may want to think about that and prepare.
If the station got 100 emails.. were 80 from IDSA lug nuts with their song and dance?
Remember they have ... said by me with a sleezy tone.. "8,000 members"... and you all are up against that.
I've seen several hundred patients make a long trip to our Capital to give legislators their opinions.. and ONE letter sent in by the state to counter these actions... a few words at best.. and ..
The legislators listened to the ONE letter rather than the hundreds of patients and their doctors.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Life lesson: Never assume the pear you are eating.. although pretty and sweet on the first couple of bites.. doesn't have a worm inside.
No.. really. There is no hidden meaning to that.
I was just eating a pear that had a worm in it. But I SAW the worm BEFORE I ate it... so it is going to be a good day.
Now back to my opinions.. knowing that I only share them in a true effort to HELP. You DO know that.. don't you?
May I suggest.. like Lymeblue's post pointed out... if you are going to continue this effort..
Ask folks to send a short email with FACTS to counter the IDSA garbage.
One quote well placed is better sometimes than asking folks to write with no direction provided who might have been able to get their attention with a fact rather than controversial things.
We ALL need to remain credible. The IDSA's favorite thing to do is say we are all nuts. We are... hee haw... but that isn't the point.
As a TEAM, we all need to be on the same page as much as possible... and back each other up.
That is not to say we can't share personal accounts. They are VERY much needed too. We just don't need folks to go off in a zillion directions.. and do EXACTLY what I CAN'T do..
Keep it short and to the point.
If someone is working with this reporter directly...
They will need to present.. in MY opinion.. OUR facts to the station BEFORE another piece is done. I would NOT promote one lab over another either.
I would stick to facts like the "standard labs" are missing up to 90 percent of people who are infected. (ILADS guidelines quote)
Example- In Maryland over $2,000,000.00 each year is spent by residents on those unreliable tests. Who holds the patents for them? Who promotes their EXCLUSIVE use in their guidelines.. to the direct exclusion of other labs and tests?
For something like this I would provide the Hopkins study with quotes higlighted... saying at least 75 percent of tests missed folks. I would point out that the IDSA editor was listed on that study and KNOWS the tests were not good.. yet edited the guidelines.. leaving in the wording stating patients must have TWO positive tests.
Ok.. these are all MY opinions.. and take them or leave them.. and I won't hate you... not at all.
Right now I have doggies up the road who need to be let out... and then the big one...
daystar1952
Frequent Contributor (1K+ posts)
Member # 3255
posted
OK...sorry.....I didn't even know you had to delete messages but they are now all deleted so if anyone wants to contact me, they should be able to
posted
I am trying to post a response to this and keep getting an error message when I try to register...
it says that the IP address of my comoputer in temporarily unable to register...
is anyone else getting this error message?? Not sure why my comp's IP address would be an issue.
Posts: 217 | From New Jersey | Registered: Apr 2007
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
elle-if you can't do the comment at least do the email letter...paste and copy their email address
i can't help with computer stuff..i'm a little surprised i was able to register...i kinda thought if i could do it anyone could-but it took me two times...you have to register...wait til they send you the email with a password-then click on thr correct link in the email
if you did it already DON'T LISTEN TO ME-I WILL SCREW YOU UP FOR SURE-(only I can live with this brain-and sometimes i wonder)
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i am soooooo glad you are not mad at me. i think i'll go "dance with the refridgerator"-i'm so happy...do you remember when i wrote that to you about 10 years ago? this time i'll be in a wheelchair tho.
I DO understand what you are saying. and i agree.
but i don't think we should do nothing.
cave and I and daystar and others are trying to help people understand about stating facts or risking being labeled crazy and worse...
i mentioned divorce in MY family with an "I" message...i can prove that...
i have the ilads video where dr H lists 42 studies that show the ilads side...but i just can't sit down and copy them to post...someone made a good comment when they said the same studies the idsa uses to prove their point can be used to prove ours...(maybe phyllis?-i wonder if anyone has a hard copy of that video to cut and paste the sources...noone would have to actually read them...just scrolling down the list would be powerful)
i wish YOU would post in the comments that statistic of how much $ is sppent in MD on elisas or whatever...NOW THAT WAS A POWERFUL STATEMENT---and even people with out lyme might jump on the bandwagon about their insuracnd rates going up...
i just told my "other half" you called me "sweet" and he agrees you must not know me that well...i'm not so sweet during my lyme rages but i do try to help where i can. thank you for the kind words.
so PEACE sister...and on we go to slay the evil dooers (i was reading harry potter last night...)
i love you tin. be well. laurie
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Good morning...
I am suppose to be on my way to my fine doctor today.. a LONG ride .. but wanted to drop you a quick note.
I am still getting booted around for not jumping upside down and spitting wooden nickles on demand. At this point I am feeling like I am being forced to jump on a band wagon that I feel is shaky and not perhaps in the best interest of patients or our doctors.
Do note please..
My opinions will not change... however.. I am still doing all I can to hopefully help others to re-focus this story so our LLMD's aren't being kicked in the head... and our labs don't take a beating.. especially in the nation's Capital.
The suggestions I made right off the bat are now being followed by those continuing to persue this project.
Unfortunately, the position we have been put in now with this report is called "running around putting out fires".
It is the same thing we've HAD to do for years.. until more recently when the tides FINALLY began to change because of the HARD work of many behind the scenes... which has really made a difference.
And although I don't feel this is the best approach for the reporter to take... and I THINK I am still in America and am entitled to an opinion of my own(?)...
I have still researched and posted over 25 pages of references for this project for daystar, LLMD's and others that will refute the lab claims the IDSA will be making.
One document was 17 pages long and filled with references... one was the infamous Hopkins blood test study (highlighted with specific points).. one was from an idiot lab.. and several others I found by researching and digging through files (back to the late 1960's).. as well as magazine articles for the not-so-technical.
I have spent hours researching, sharing abstracts, editing for language the patients letters to the reporter, writing to encourage people to respond with factual information... etc.
Sooooooooooooooooo.. it would be REALLY nice to have the snide remarks end... and for folks to know that even though I do not agree with the reporters approach.. I am still putting an enormous amount of effort and time into this project for others who want to persue it.
And last time I looked... I was NOT a turnip. So I doubt we can get anymore blood out of me.
But I WILL, in order to confirm that statement, check with my doctor today to be sure I am not turning purple, forming roots and growing green leaves out from the top of my head.
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
tin-thank you for everything you have done for all these years and what you are doing now. (i have noticed the comments to abc are getting better and better) i didn't see any snide remarks-anyone who has been here long enough to know what you have done for us should know better. but we all probably have a few bugs left in our brains so i guess we can all mess up sometimes. thank you again. the work you have done has made a huge difference in this lyme fight. we are all better off because of you. lp
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
anyone know how to contact ekpritch? he'she made a comment on the abc thing about thyroid-i'd like to talk with them...thanks
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
up.
ekpritch?
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[lol]](graemlins/lol.gif)
![[Razz]](tongue.gif)
![[Big Grin]](biggrin.gif)
Printer-friendly view of this topic