Wiki Lyme.activism.

AGREED!!! That's part of what I'm out doing these days!! I'm contacting as many sources of information that will draw people (like Wiki pages and Farmer's Almanac) to try to get them to revise their information and put up current guidelines and remove all outdated material - to put it nicely.

We can use all the help we can get though! If there is anyone else that would like to contact these sites/places and use scientific articles to back up our claims, and using the fact that IDSA treatment guidelines have now been removed from the NGC (National Guidelines Clearinghouse) - please do!!

I am not however worrying much about what newspapers and magazines are putting out. Any kind of retraction on print material could easily be missed by those that really do need to see it, and I have to keep my goals somewhat reasonable!

as long as it's the people that are continuing to promote wrong and outdated information on the other side of that wall (unintentionally), at least we can annoy them enough to get some of them to change it!! LOL!

Whether or not it was a conspiracy to start with, it is one now to keep it the 'status quo'! Time for it to change!!

PROGRESS!!!

So I wrote to one online publication that I get regularly that had some misinformation about Lyme disease just this morning - less than an hour ago to be honest. They have already replied:

"Thank you so much for your email. I appreciate your comments more than you know: In September, I was bitten by a tick and found the bull’s-eye rash, and subsequently tested positive for Lyme, but even after antibiotics, it went chronic and I’m still battling the disease, forced to work from home.

While my initial goal, as Web Content Editor who suffers from the disease, was for everyone to be safe with tick season on our doorstep, I am still learning, and should have checked more closely about the timing details, some of which have obviously been updated since the original publish date of the story. I will go in and adjust the story to more accurately reflect the urgency.

Thank you so much for your note and being an advocate for those of us who suffer. I wish you well in your recovery from this awful disease."


Keep up the good fight!! You never know where we have a friendly ear, or ally who will respond with the type of answer we wish to hear!!

YAAAYYY for progress - Happy dancing all round!!

One victory at a time :) Well done, Traveler, and thank you - the world needs advocates like you!

Agreed!!! All it took was one, very nicely and politely worded email to get one publication to change!! Others will be harder to convince, but be sure to use science to back up our claims and we will get more and more to change to correct information!

I'll demand it. I'm not convincing them. We have a right. We have doctors on our side. I want our info up.

It's just not right. I'm tired of these immoral people. Everyone in America knows these pharmaceutical companies own America for money. They clearly have findiancial interest in this. I have moral and spiritual interest in Lyme. I think we as Lymies have to think of new and creative ways of activism, speaking on it, and helping one another.

k07

Do some Googling using "Carl Tuttle Lyme" and you'll find ways to join something organized in helping the fight.

At the minimum, you'll find sample letters you can write to your local representatives in support of the Lyme bill. If I remember correctly, there's even a resource for you to identify your local representatives along with their contact info.

And, sadly, yes....I agree that Big Pharma (in collusion with the government) is responsible for the health mess in America. They have no incentive to have things be otherwise.

T -
Excellent work you tireless soldier!

Might be a good time to repost Tuttle's campaign link... I'll go get it!

-p

I do not have the afore mentioned, vcast, but now that my brain fog has gone and my science brain has well and truly returned, this is something that I am working on putting together for my own sake, but will happily share here if I get it finished, lol!! As a science grad I like things logical and evidence based and since I teach high school I prefer to have it in terms that my students can access.

In the meantime, this is my current response to those who will just refuse to follow the logical scientific findings. I chose to leave the science aside for a moment and instead question why they are saying what they are saying. I have annoyed a few people, lol, much to my joy ;) It goes as follows.........

So let's just examine the basis of your arguements in a logical fashion from your perspective. Firstly, from my understanding of your statements, you are arguing two cases.

Firstly, you argue that 28 days of antibiotics will cure a Lyme infection, regardless of the length of time the person has been infected. OK, so let us for a moment assume that that is, in the face of contradictory scientific evidence, the truth. You argue this based on what you have decided is a lack of evidence regarding the existance of an infection beyond this point. You then however seem to be of the belief that, instead of having a chronic form of a disease (for which you state there is proof of abscence) you would infer that instead 'sufferers' instead have a psychological illness, yes? I have seen arguements for conversion disorder,depression, schizophrenia, munchausen's, hypochondria (yes, that is a recognised psychological disorder) put forward as alternatives.

So, therefore your arguement follows that since you claim that one cannot have Chronic Lyme, given a lack of evidence from a blood test, that instead a person must have a psychological disorder.....for which there is no definitive test, ergo no scientific proof? Now, given that your basis for lack of Chronic Lyme is centered around the arguement of definitive testing, the fact that you would then go one to argue the case for a subjectively diagnosed mental disorder does in fact fly in the face of logic, no?

And, let us not for one moment leave aside you arguement that Lyme Literate doctors are 'quacks', unlike the science of psychology, which, by any scientific definition, is certainly the less evidence and more subjective of the sciences, no? Hmm, why go to one 'quack, when you can go see another?

In addition, if this truly is your opinion and those who simple 'believe' they have Chronic Lyme are infact suffering from a mental disorder, then I challenge your means of addressing that by refering to those people as 'Lyme Loonies'. Is this the way that you address all people that you believe have a mental illness? Do you hang around other pages and support groups stating 'crazy conversion disorderists', 'silly schitzophrenics', 'dizzy depressives, 'mad munchausen's' and 'idiotic OCDs'? Now, it is not that I do not for a moment think that such mental disorders do not exist, but I suspect that the people who are suffering from them would take massive offense to your means of conveying your thoughts in this manner. Yet, for some reson, you think that this is a polite way of a addressing a different group of people who you honestly believe to be mentally ill.

I question why.

In addition, following your CDC based opinions, you would agree that there is such a thing as Post Lyme Disease Syndrome? Therefore, you are of the opinion that after a 28 day course of antibiotics it is indeed possible for people to have residual 'symptoms'. Correct? But that to your mind, these people should be offered no further treatment of any sort and be left to suffer? And should these symptoms not resolve, or infact as is the norm, worsen over time, then you simply group these people together and refer to your assertation that, as I discussed in the afore mentioned paragraphs, they are infact suffering an alternative mental illness?

So, given your, what I can only determine from a scientific perspective, to be circular logic, your ability to hold your views as unwaveringly valid even in the face of contradictory scientific findings, and what can only be considered a complete lack of empathy towards people suffering, regardless of the causal agent (bacterialogical or psychological), I can only conclude that you yourself would be of great interest to the psychologists and psychiatrists, since these traits are, albeit subjectively, demonstrative of sociopathic, narsasitic or schizophrenic traits, that warrant further investigation. Hey, good news....you could be a loony too?!?