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pepphell
Regular Member


Date Joined Jan 2010
Total Posts : 134
   Posted 6/17/2010 7:02 PM (GMT -6)   
Hello all,
I hope all of you are doing well, if not, then I wish you my best. If you are sick the way I am, and are on this forum, then I am sure you are looking for help. One thing we all realize that as lymies we are the worst group of people without proper diagnosis and insurance coverage options. But we need to spread awareness to further our cause for a better future.

A group of people from the NYC Lyme Support group have contacted media people most likely to cover the story of the IDSA corruption leading to dishonest and dangerous treatment guidelines. To read more about it, go here: http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284 .Recently the panel that was supposed to review lyme treatment guidelines have due to improper voting process have vindicated the IDSA. ie. IDSA says 3 wks of doxy is good enough for lyme. oh is it???????????????????????

The group from NYC have sent Jon Stewart, Keith Olbermann and Rachel Maddow fairly comprehensive packets about the current political issue, including copies of Under Our Skin. What they think would help now are emails to these three media people requesting that they do a story on Lyme disease and the dishonesty of the IDSA guidelines. HOWEVER, since so much info has already been sent to them, the most important part of the letter is to give *your* Lyme story so that they recognize how serious the problem is. It's these personal stories that have frequently most impressed media. Keep them short, honest and poignant :)

Jon Stewart can be emailed at thedailyshow at comedycentral dot com
Rachel Maddow can be emailed at Rachel at msnbc dot com
Keith Olbermann can be emailed at countdown at nbcuni dot com

===========
Some sample ways to get you started...


Example 1.
Dear <rachel>,
I have been suffering from Lyme disease for (?) years and it is only repeated courses of long term treatment antibiotics that have allowed me to have any quality of life at all. It's important to me and all chronic Lyme disease patients that you expose the corruption of the Infectious Disease Society which claims we don't exist .

My Lyme disease effects me like this.....

Dear <jon>,
I've been disabled by chronic Lyme disease for (?) years. The guidelines of the wealthy and powerful Infectious Disease Society have said that my illness doesn't exist. The authors of their guidelines have been found to have serious conflicts of interest, yet their work will still be used by my insurance company to deny me the treatment that has (kept me out of pain, enabled me to function, or whatever treatment does for you). We need you to cover this important story about corrupt guidelines.

My Lyme disease effects me like this.....

Dear <keith>,
The fact that much medical treatment is done according to published treatment guidelines that are not subject to oversight is an issue that has gotten no coverage in the media. The current crisis about Lyme disease is an example of how serious this problem is.

I have had Lyme diseaes for ? years. My Lyme disease effects me like this....

Dear <jon>
As a Lyme disease patient, I'm writing to ask you to cover the story about the guidelines on Lyme disease which will keep me from getting sufficient treatment for my illness.

My Lyme disease effects me like this.....


=======

Moderators,
This is not an advertisement. This is simply a request to influence media, so that they can make the wider audience aware of our sufferings. I beg you not to delete this message. There are people out there trying to help lyme patients, and they need help. If we won't help them, no one will!!!

Thanks all. Reply to this thread with the stories you sent, so we can all share it, and get to know each other better.

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4396
   Posted 6/18/2010 5:30 AM (GMT -6)   
This article may be also helpful to include...
http://www.peh-med.com/content/pdf/1747-5341-5-9.pdf
-Razzle
Chronic Lyme Disease, Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, etc.; G-Tube; TPN via PICC (trying again to wean off the TPN).
Meds:  IV Cipro, Heparin (to flush PICC line), Singulair, Claritin, Domperidone, Colloidal Silver, probiotics, digestive enzymes, Milk Thistle, Magnesium, homeopathy.

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