Topic: Freelance Writer needing Lyme Controversy Info
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I know this isn't really a medical question, so if this has to be moved, feel free. I just know that most on "Medical" WANT all the lyme recognition we can get so thought I would get the most feedback here.
My brother in law is a freelance writer for a National Publication, where he publishes frequently.
He had no clue of the Lyme controversies and why it took me so long to get diagnosed.
He's looking for FACTUAL information, not emotional. I'm newly diagnosed which brought this to his personal attention.
He's interested in the Jones case and others in that boat and how that could even be happening.
Controversy between ILADS and ISDA and this article WILL be slanted to the ILADS side obviously. (Writers can do that) Grin!
Why C.D.C. for lyme is so stringent? IE, why CDC doesn't even have Band 31, a known lyme band on their western blot.
And why most M.D.'s won't even acknowledge the Igenex test.
He had no clue this was going on in our country. Nor did I until I was diagnosed. So he's out to write an awareness article.
Again, I need to STRESS....this is NOT written from an emotional angle. It's totally FACTs. Any of the above and anything else that would fit in this scope.
Any web links with factual information on the above "controversy" or this line of thinking will all be passed on to him.
I know he will be investigating on his own as well but asked for any information to start and get him out the gate.
I think we all want as much "free publicity" on the awareness of chronic lyme as we can get, so hopefully there will be some good help here.
Thanks for any help I can pass on.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
Although he (or you) might have already checked here, I thought I'd put it on anyways just in case
Wikipedia has a pretty accurate, well-referenced article on lyme and the lyme controversy. It seems to be factually-based, but it does come off sounding a little biased towards the ILADS side. However, that doesn't bother me, 'cuz heck, that's the side I'm on!
Anyways, if you're interested, here's the link. It gives a whole overview of lyme and then the controversy stuff is at the bottom.
Good luck to you and your brother in this! And kudos to you for getting involved! Sounds like a great idea.
Posts: 89 | From UT | Registered: Jun 2006
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Your thread seems to have multiplied. Why don't you go back and delete the copies that have not attracted any replies, so as to clean up and have fewer places to look for your answers?
I should mention that all of these sources come from media that are not seen by many of the general public, so any national publication attention his story gets will be groundbreaking. The one above was printed in a small newspaper. Probably read only by subscribers in that location.
posted
And here is another one, which I just posted on general support forum in order to have it in the archives. Thought it was already there, but can't find it. So, see here the connection between insurance companies and camp a followers and academic medicine:
posted
tell him not to waste his time, there are far better writers than your brother-in-law who are on top of this situation like white on rice.
it'll take him a period of months to understand the details, and that's assuming he has a science background of some sort.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Hey, that's not very nice!!! I think any writer educates themself by researching the topics they write about; a fresh, new perspective will be great! He will probably write very passionately about it as he is just having his eyes opened to it all....it will light a fire under him (hopefully) and readers will feel that. I think we should be grateful and supportive of anyone tackling this in an educational and accurate way that gets the truth about the disease out there!
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
I agree with Tracy. Keep up the awesome work Cathy and tell you're brother-in-law it's a great thing he's doing. We can use all the people we can get to get this out to the public Posts: 89 | From UT | Registered: Jun 2006
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Do you know him? Like, are you buddies or something, and have learned that he is slow, or maybe a little dense?
And those far better writers you mentioned: Thus far they have done a such fabulous job reversing our situation, that I would not want to jeopardize our wonderful situation, political and otherwise, by having another voice rock the boat.
It is a good thing you are here to warn us.
Thanks!
Posts: 845 | From Eastern USA | Registered: Jul 2006
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quote:Originally posted by jif: tell your brother-in-law--thanks!
Amen to that!!!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Whoa! I never wanted this to become a battle ground.
Perhaps we could focus on the original topic which is good information for writing articles.
My brother in law has offered to tackle this and write something Nationally.
With that said, ANYONE could take all information in this post as well and if they can get National recognition, I would ENCOURAGE them to do it as well.
I would think it would be to our benefit to have "too many" writing Nationally vs no one.
Turning this into a competition of who the best suited writers are, seems counter productive.
Too many people hearing of my "hard to diagnose illness" that must just be a "bug bite" SHOUTS that we need some AWARENESS.
I did NOT ask my brother in law to do this. He called US and asked if we were ok with it and yes, we gave encouragement.
To be honest, I don't care WHO'S writing penetrates the most "nationally". I just wish SOMEONE could get something out there.
Shouldn't we encourage ALL writers?
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
Perhaps there is a knowledgeable person on this board who would agree to talk with this generous fellow and provide all the info that is needed instead sending him for Internet search.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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posted
Personal interview might complement other material. I think multiple sources are better than just one. Any good writer knows this.
And if there were other good writers on top of this situation already, maybe we would be in a better place. I personally tried a number of investigative journalists, to no avail. And so far all the national pubs, like NY Times and Wash Post, etc have taken the other side.
So, have your brother in law fire away. His help is definitely needed.
Posts: 8430 | From Not available | Registered: Oct 2000
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
*** to no avail***
It doesn't mean we should stop trying!!!
Please note that in Canada we were able to put good stuff in national newspapers. So it is possible here as well.
***Personal interview might complement other material.***
I have meant guidance - not interview.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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posted
I don't want to mention physician's names but have your brother check out a recent LLMD who has been questioned and taken to a hearing by a state's medical board.
This physician has a new website and is very open on the website as to what is going on with his practice.
Hint...he is an Infectious Disease Doc...has been treating AIDS patients for years...
The insurance companies have now dropped him like a hot potatoe and so now his AIDS patients are suffering right along with his Lyme patients for covered treatment.
It is a disturbing and disgusting tale of ignorance on the part of the medical community at large...your brother in law could represent these facts and leave the emotional response to the reader.
The only way a reader would not have an emotional response is if the reader has no pulse.
Thank your brother in law for being interested and curious. I hope he writes the article. I am sure it would prove very interesting.
-------------------- �Pride is concerned with who is right. Humility is concerned with what is right.� - Ezre Taft Benson Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
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posted
tdid, I've been researching this issue for a couple of years, and am in the process of putting together a book. I have a lot of history, biochemistry, and other information. In approx. 2 weeks I'm moving to southern Maine, perhaps he and I can share resources.
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Sounds like a great idea.
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