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-   -   OK heres the letter about Lyme's (http://www.healthboards.com/boards/lyme-disease/523737-ok-heres-letter-about-lymes.html)

KeyLyme 08-09-2007 07:42 AM

OK heres the letter about Lyme's
 
Okay, awhile ago we talked about putting together a letter to send to our local and national government officials. I put together this letter so it would be easier for everyone. Please feel free to personalize the letter to correspond with your own story.

[COLOR="Blue"]In light of recent events with President Bush receiving treatment for Lyme’s Disease, I would like to take the opportunity to plead mine and countless others cases.

I, along with innumerable others, suffer from Lyme Disease. It's a debilitating illness that steals our health and sometimes even our lives. Many of those untreated will suffer chronic debilitating illness. Some unknowingly will pass the disease on to their unborn children.

The average time from infection to diagnosis is 4.7 years. Most are misdiagnosed for years with incurable conditions such as chronic fatigue, fibromyalgia, lupus, multiple sclerosis, Alzheimers or ALS. I can't tell you how many Lyme sufferers I have talked to who have lost their jobs, marriages, financial security, independence and their daily joy of living because of severe degradation of health.

As of yet, there are no reliable tests for Lyme disease. Fewer than 50% of patients diagnosed with Lyme Disease ever remember a tick bite or have the bull's eye rash. Available blood tests yield a high percentage of false negatives due to the cunning nature of the spirochete, which is able to change into a dormant, undetectable cyst form, or hide within white blood cells.

Cases of Lyme Disease have been reported in every state. This is not a disease that is localized in the north-eastern states. The Center of Disease Control (CDC) by its own admittance, methodically underreports Lyme disease and contradicts aggressive treatment. According to the CDC, Lyme borreliosis is the number one vector-borne disease in the country. Statistics from the CDC indicate that there were over 23,000 cases reported in 2005. However, they acknowledge major underreporting, perhaps 10 times higher than their official estimate. In other words, there are almost 250,000 new cases a year and 2 million people in the United States suffering from chronic Lyme disease. Based on the inconsistency between their own clinical findings and that of the CDC, many researchers theorize that Lyme disease rates may be up to 100 times higher than the official CDC numbers. To further complicate matters, the ticks that transmit Lyme also carry other bacteria, and these co-infections appear to be as complex as Lyme and as difficult to diagnose and treat.

Unfortunately, the majority of doctors are not well educated about Lyme Disease and many patients are given substandard treatment and/or treated as hypochondriacs. Each year, thousands are misdiagnosed; many of them told that their symptoms are "all in their heads." I know personally of people who have a positive Western Blot but their doctors will refuse to treat them out of fear of losing their license or being harassed through the legal system. These patients, among many others, are forced to search the country for Lyme Literate Doctors. Because the majority of Lyme Literate Doctor’s do not accept insurance, the patients end up spending thousands of dollars out of pocket for treatment thus creating financial hardships.

Because Lyme Disease costs billions of dollars in medical costs, long-term disability expenses, and lost wages, it is in the best interest of our country to enact legislation that will allow doctors to properly diagnose and administer treatment to Lyme Disease suffers without fear of persecution.

Thank you,[/COLOR]

zandvoort 08-09-2007 09:29 AM

Re: OK heres the letter about Lyme's
 
wow standish- this is AWESOME!!!! :D I was wondering if this would come soon. The link to current events helps too. I wonder if you (or someone) could use it to post to UTube. That site gets more hits per day than anywhere! I will try and think of ways to use it as well. I am having that meeting with my co-worker next week to try and influence his nuro intern wife. I will use your letter as an outline for our discussion.
Thanks so much!

One other thing, I saw on the web that Bush signed legislation in 2002 that addressed Lyme diagnosis and asked the CDC to:[LIST=1][*]develop an accurate test for diagnosis[*]revise their surveillance case definition so tere is an accurate understanding of the growth of the disease (thus $$ to fight it)[*]encourages CDC to broaden their range of scientific viewpoint including community based clinicians[*]NIH appropriate committees for lyme studies and representation and encouraged to accept broad range of viewpoints[*]Social Security administration encouraged to develop educational materials for SSA employees to help them understand the debilitating effects Lyme can have. Again, broad view not just wshington scientists.[/LIST]CDC tracking rules for diagnosis. Does anyone know of it? Is it real? Will it change with the new protocols from LDA?

It says it is part of public law 107-116 signed on 1/10/02. Departments of labor, Health and human services, and education, and related agencies appropriation act 2002. Of course, it just ASKS them to do these things- not make sure they get done!:)

KeyLyme 08-09-2007 10:39 AM

Re: OK heres the letter about Lyme's
 
[QUOTE=zandvoort;3145885]wow standish- this is AWESOME!!!! :D I was wondering if this would come soon. The link to current events helps too. I wonder if you (or someone) could use it to post to UTube. That site gets more hits per day than anywhere! I will try and think of ways to use it as well. I am having that meeting with my co-worker next week to try and influence his nuro intern wife. I will use your letter as an outline for our discussion.
Thanks so much!

One other thing, I saw on the web that Bush signed legislation in 2002 that addressed Lyme diagnosis and asked the CDC to:[LIST=1][*]develop an accurate test for diagnosis[*]revise their surveillance case definition so tere is an accurate understanding of the growth of the disease (thus $$ to fight it)[*]encourages CDC to broaden their range of scientific viewpoint including community based clinicians[*]NIH appropriate committees for lyme studies and representation and encouraged to accept broad range of viewpoints[*]Social Security administration encouraged to develop educational materials for SSA employees to help them understand the debilitating effects Lyme can have. Again, broad view not just wshington scientists.[/LIST]CDC tracking rules for diagnosis. Does anyone know of it? Is it real? Will it change with the new protocols from LDA?

It says it is part of public law 107-116 signed on 1/10/02. Departments of labor, Health and human services, and education, and related agencies appropriation act 2002. Of course, it just ASKS them to do these things- not make sure they get done!:)[/QUOTE]

Thanks! I'm so glad that you like it. I tried to keep the info as short and sweet as I could...I tend to get a bit wordy sometimes.

I'm not too familiar with utube I can look around on it and see if I can figure something out. Maybe there's somebody on the boards who can give some advice on it.

When I was doing a search on President Bush and Lyme's I saw the same thing you mentioned. At this point, I think it's time for the legislative branch to get involved and pass some new laws about Lyme Disease. I've sent copies of this letter to the Senators, State Rep, Govenor of Kansas. I also sent one to the White House too. I know it's a long shot but maybe if we all send letters, it might help?

I have a close friend who used to work with our State Rep Dennis Moore. He's still in office, so I'm hoping maybe my friend will have some inside connections.

itsmylife 08-09-2007 12:54 PM

Re: OK heres the letter about Lyme's
 
HI, I just woke up. I'll be happy to check on this later..so far it looks good...I think my own personal gut feeling is I'd rather use Darryl Hall as an example rather then bush. See, at least with bush there is no timeline when you could seethe difference between his obvious state of impairment....Since in my opinion, he has always been mentally impaired...sorry.

But with Daryl Hall, he has a lot to say about the illness and will make the time to get involved with us I think.

Again, thanks for your efforts, I like what you have here and would like to help..I'll check in later.

(Also, from what I understand Daryl Hall suffered more of what we are suffering with, infection, no idea was wrong with him, no rash, no treatment, for a significant period of no treament, and chronic conditions with co infections.)

Sadly, I think people have less respect for Bush then they would a person like Daryl Hall. I know he was was infected years ago and just did an interview this month about it..so I know he was struggling for a very long time....they told him it was the "sumer flu." Threre is a segment on his web site about his experience....segment number II.

KeyLyme 08-09-2007 01:01 PM

Re: OK heres the letter about Lyme's
 
Good idea. Only reason I used Bush as an example is b/c I was planning on sending this letter to my state specific government officials. I figured they'd know about Bush before they'd know about a celebrity having Lyme's.

I think Darryl Hall is a good example...especially seeing how he's had recent exposure on Fox News. Problem is, I've never heard of Darryl Hall before. I did some research and found that he has wrote a ton of songs (some of them I really like). I figured if I'm 28 and didn't know who he was, I'm sure a middle aged congressman would have no clue. Who knows, maybe I don't have a clue!

Depending on the party the letter is being sent to, we can always customize it w/ different examples of people who are well known and have Lyme's.

agm08001 08-09-2007 01:44 PM

Re: OK heres the letter about Lyme's
 
GREAT letter! I have thought about becoming some sort of advocate for us Lymies and hopefully will find a way to get involved in my area. I have a few ideas. Hopefully my brain will cooperate long enough one of these days for me to actually DO something constructive....:confused:

KeyLyme 08-09-2007 06:30 PM

Re: OK heres the letter about Lyme's
 
Yeah, I can relate w/ the brain fog. I had to fight through my slow processes to get the letter done. I thought it would be good to have a template letter for other Lymies who want to send letters to their state specific government officials. I thought it would make things easier if the letter was already written b/c I know how hard it is for us all to gather our thoughts.

itsmylife 08-10-2007 09:30 AM

Re: OK heres the letter about Lyme's
 
Please tell me someone noticed the underlying humor in my last post.

mctassi 08-10-2007 09:50 AM

Re: OK heres the letter about Lyme's
 
itsmylife, I just read your post. I get it and agree. Slow, dull thinking, searching for the right word, brain fog. Sound like anyone you know?

itsmylife 08-11-2007 07:05 PM

Re: OK heres the letter about Lyme's
 
lol, ok, thanks.

jojo 08-12-2007 09:12 AM

Re: OK heres the letter about Lyme's
 
[COLOR="Purple"][B]Guess I need to do some research cause I THOUGHT Daryll Hall was a blonde, tall female actress from years ago....hmmmm...;)

Funny one there Rodney!!

:D [/B][/COLOR]

jojo 08-12-2007 09:35 AM

Re: OK heres the letter about Lyme's
 
[COLOR="Purple"][B]OOOHHHH Daryll Hall of Hall and Oates....:D [/B][/COLOR]

itsmylife 08-12-2007 10:00 AM

Re: OK heres the letter about Lyme's
 
LOL, not Daryl Hannah from the movie "Splash."

itsmylife 08-12-2007 10:02 AM

Re: OK heres the letter about Lyme's
 
[QUOTE=mctassi;3148177]itsmylife, I just read your post. I get it and agree. Slow, dull thinking, searching for the right word, brain fog. Sound like anyone you know?[/QUOTE]

I guess it would be ideal to use a celebrity that looked like he had all of his marbles up until he was infected...and then has the ability to speak on a recovered intelligent level.

I don't think that is the case with Bush.

jojo 08-12-2007 10:16 AM

Re: OK heres the letter about Lyme's
 
[COLOR="Purple"][B]Hey if you can find it there is a GREAT interview that Daryll Hall does for Fox about his Lyme Disease Battle. Now if only we could get him to keep going with all of this...I see he has had it for a couple of years now. He has lyme and co-infections...wow...[/B][/COLOR]


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