Topic: It's OFFICIAL Now- Chronic Lyme DOES Exist!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
We've been able to be denied treatment in part- major part- by the CDC & IDSA IDiots because they claimed there is no official definition of chronic Lyme disease.
So they made up the garbage PTLS to explain why we are still sick after their recommended treatment. And they basically said it isn't an infection, we are just complainers, whiners, and nuts, etc.
Well, EAT THIS- Ben Beard, Mead, Wormser, McStupid, BumSteere, Dattwyler, Shapiro, Halperin, Klempner, Krause, Bakken, Strle, Stanek, Bockenstedt, Fish, Dumler, Nadelman and all of the IDIOTS who have been watching this play out, kicking us in the process and letting us suffer, become disabled and die.
We now have an official disease process thanks to people like Dr. S (author, et. al.) who actually care enough to get this straightened out and stop this nonsense.
Ding Dong the IDSA/CDC Witch is DEAD! They are melting! They are melting!
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Thank you TC for posting this. I knew it was real, you knew it was real, all our hundreds of thousands of Lyme friends knew it was real. I love the ding dong the witch is dead.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Tincup,
You never cease to amaze, you tireless warrior ! Great job ! Great news !
And kido's to Dr Stricker for finally legitimizing Chronic Lyme Disease !!! It is truly a happy day !
Posts: 2977 | From Florida | Registered: Nov 2016
| IP: Logged |
posted
Yes! I am SO GRATEFUL to Dr. S, Dr. H and all of the tireless doctors that have honestly taken care of us .... when NO ONE ELSE would.... Words cannot express my gratitude!
Thank you as well Tincup! You have been INTEGRAL to helping many regain their lives.... Blessings!
Posts: 859 | From Southeast | Registered: Mar 2011
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Well aren't you all sweet.
I knew that you were already actually, but you never cease to amaze me with your kind words for me and others. Thank you!
And with ILADS guidelines now being the ONLY ones officially listed at the Guideline Clearing House, and now this chronic definition supported by over 700 peer-reviewed studies, well....
IDSA/CDC- Kiss my grits!
Hey! We will have to have a going away party to celebrate the end of the IDSA/CDC nightmare! Ding Dong The Witch Is Dead! Which old witch, the WICKED OLD WITCH!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
If everyone- I am sorry I am so tired after doing this all day and night I can barely type- sorry- but if everyone sent the links to their local paper and wrote a short note about it we may be able to spread the news! Nothing fancy- just a quick note.
I sent it to three papers in 3 states tonight. Hoping they publish their- no OUR- good news. Eek! THINK TC, THINK! Good grief. I can write! You'd never know it with all the mistakes here. Anyhow...
You can refer the editors to Dr. S in your notes so he can respond to questions and/or give quotes.
THAT would be a nice thanks to him.
My bet is they- icky icky IDSA/CDC, etc.- will come after him with both barrels blazing for publishing this study.
I am taking bets on how long it will take the idiots to respond to the news in writing. At least this time they can't say the study is flawed because of "lab contamination"- their typical excuse to try to dismiss everything we produce.
PLUS- many of the references used were studies published by the IDSA/CDC and their idiot friends between 1986 and 2017, so what CAN they say? It is in their own words!
ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
Fab, Tincup. Thank you for all your efforts on our behalf.
Posts: 1647 | From UK | Registered: Nov 2008
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Going away party? How about one big a$$ bon fire and guess who is our wieners on a roasting stick?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
posted
WAHOOOO!!! TC thanks for keeping us in the loop! I don't even know where to find out about the politics that are happening... You are my source!
But seriously... HUGE step in the right direction. So grateful for people who fight for us!! Wow, tears of gratitude for someone I don't even know.
Map1131... HAHAHA
YEAH, YEAH, YEAH!
I'm going to figure out how to write my newspapers!!
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Yes, you all are so beautiful! Thanks so much!
And Map, you make me laugh outlaid. And you'd have thought I read your response BEFORE I wrote this paper below. I didn't. But, we had the same thoughts in mind- fire!
I wrote this to help explain how great this is for all of us. Of course I'd like to have been more professional in the response, but you know me. I seem to have trouble playing nicely with the IDSA/CDC pigs, and it shows.
UK- this definition paper is great cause it is something that can be used internationally. See link below. It brings us all together.
HW88- you've got me laughing. getting political news from me is like watching Jay Leno on late night tv! Not a real professional source, but he had a point.
I think you'll like this explanation too. Sure hope so.
posted
Very well-put definition. I would add endocrine to the list of manifestations, as it doesn't fit in the musculoskeletal, neuropsychiatric or cardiovascular categories.
Our hormones get way thrown off by the illness and hormonal dysfunction played quite a role in the mystery of whatever it was I had.
Come to think of it, I might separate neurological off, so say neurological/neuropsychiatric as one of the categories, since many have neurological symptoms without psychiatric ones, like numbness, for example.
I know Dr S, so I think I will communicate with the office.
Anyway, it's wonderful he's pushing the cognitive understanding of the illness forward.
[ 05-14-2017, 03:59 AM: Message edited by: Robin123 ]
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
Brilliant!!!!! Thanks, TC. Another advance for science and evidence based clinical experience!
Posts: 360 | From Massachusetts | Registered: Dec 2012
| IP: Logged |
posted
In addition to the information that now supports what we all continue to suffer from, Chronic Lyme Disease (CLD-T for me) I found this article when I was researching what I might be tested for when SSDI scheduled me to be evaluated by a psychologist.
I was concerned they were trying to say this was all in my head or something but it turned out to be testing for cognitive problems. This article presents the findings from a study called the "Distinct Patten of Cognitive Impairment Noted in Study of Lyme Patients".
How interesting that this is from like 1994 or so AND the mean time from "onset of symptoms to neuropsychological testing was 4-14 years". Amazing that it shows all the symptoms we complain of like word-finding, organization, etc etc.
And amazing that this study is SO old yet the CDC says these problems don't exist!
posted
So does this mean insurance will cover said treatment soon, such as herbals, Rife, etc? I am so broke I dont think I can continue going to the LL, and that is inexcusable. I deserve a chance to live.
Posts: 606 | From sw suburbs of chicago, Illinois | Registered: Mar 2016
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Sorry I have not been around to respond to you all. I pop in and out as the messenger sometimes and miss a lot I'm sure.
UK, glad you like it! You are very welcome!
Map! HA! Better be cutting several sticks for roasting. I have a few names on that list!
OOPS! Already responded to them. Can you tell I'm a bit tired out?
HW- Glad to see you dancing. It is nice! I would love to assist you with writing, and don't usually turn anyone down, but right now I am out of energy.
If you want to review some of the stuff I've written, or prompted or been inteviewed for as an example, here are some of the articles.
May I suggest- A Letter to the Editor. Under 200 words, even if they allow more. The shorter the more chance it will be published. And it is free doing it this way.
If you'd like me to edit something for you please send it to me and I will certainly do so. My pleasure.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Yes Bob, I agree! It is really good! Really, really good. Glad you like it.
Hey etb, good grief! So sorry you had so much trouble back then. That shouldn't be happening.
And you are right. The literature IS out there, but the IDSA/CDC ignores it to push their own profitable agenda. And they wrote a lot of it themselves before they got neck deep in the let's jump in the money pit! UGH!
And I am glad to hear you shared it with your health care providers. Wonderful news, and thanks!
6H- Sorry to hear about your situation. It sucks!
Truth? I don't expect the insurers to suddenly waltz into our lives with their wallets open. At least not when I am in my right mind- wherever that is! ~smile~
I hope, like this was one big step moving forward combined with many steps by many people along the way to make it happen, that soon we will force the insurers hand.
They SHOULD realize it is better for them to treat early and completely rather than having to fight more and more people and killing them in the process. Someone in the insurance business must have a conscience. At least that's my dream.
But, what ever the change I regret sincerely that it may not be soon enough for you or me and all of our members here to handle today's problems perhaps, but soon I hope.
As much as I HATE HATE HATE even thinking about legislation, it may come to that to be able to make them pay.
A few well designed campaigns in a few select states with the full support of LDA which is a must, & ILADS, IF they can get on board woo woo woo? But, mostly I think they should stay out of it (to be honest). Good, no great docs mostly, but, not so great in the political arena.
And we can't follow other people who THINK and try to act like they know what they are doing, but mess things up royally and have a long history of doing so.
In the meantime, I am holding out some hope, depending on the make-up of the new Cures permitted committee (people involved), that they can do some pushing and shoving and make things happen. Bless their hearts, they've been with us for a LONG time.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Robin557739583,
I HOPE you didn't contact his office yet. May I explain?
1. He can't and won't change it, so saying something now could be considered as being a negative comment or criticism of his work. That would be sad if that happened.
2. He MUST go by what the studies say (the ones selected in the final run-down) because they had proof positive Lyme patients by the IDSA guideline testing definitions. Even if they are a bunch of bologna, that is the way it must be done. No exceptions.
It can't be about what we say or we know, or from studies that don't have PCR or culture positive patients. It MUST be professional and follow the journals rules too.
If he would toss anything in there or say it differently than the studies dictate or he did, it would be trashed even worse by IDSA/CDC and others, IF it were to be published at all.
3. To be published in our world is next to impossible. And I believe you and I know what he would like to say, but of course it wouldn't get published if he did. And you are right. It does open up the list of symptoms big time. More to come I'm sure.
4. Since he has published 100 plus Lyme studies in various journals, I do believe he is the best judge to say what can and can't be done. Our wishes, and wants, and opinions have no place at this level.
I think the best thing anyone of us could say now is thank you to him.
And the best thing we can do is share it all over tarnation. And keep sharing it. Hammer it into the IDSA/CDC and all health care professionals.
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!
![[Big Grin]](biggrin.gif)
![[group hug]](graemlins/grouphug.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic