I read your testimony with great sadness. I am so sorry that you are sick -- I truly pray that you will get your transplant and have the new lease on life that you deserve.

But please don't minimize Lyme Disease (LD) in your effort to get your own illness funded. Many people with LD never get their lives back. And there are thousands of people suffering with LD that are undiagnosed or misdiagnosed all over the world.

You probably haven't meet anyone with LD because:

* They are too sick to go out,
* They don't know they have Lyme and have been misdiagnosed, or
* They are afraid to tell anyone they have Lyme.

LD causes great fatigue. It causes the body to attack itself trying to kill the Lyme bacteria that will hide in cysts in the body. Often the body will attack itself in the form of thyroid disease or other autoimmune diseases. People with chronic fatigue, Lou Gehrig's, Parkinson's, MS, fibromalga, arthritis -- the list goes on and on -- may be misdiagnosed when they actually have LD. LD causes people to have a number of autoimmune disease as well as Mono (Active Epstein-Barr). Many have skin problems and an array of mental illness because the Lyme bacteria crosses the blood-brain barrier producing symptoms as deverse as ADD, depression, Lyme rages and hallucinations -- did you see last weeks Parade Magazine reporting on Amy Tam?

Many insurance companies will only pay for one month of antibiotics to treat LD. If you go to the Center for Disease Control (CDC) web site:
(http://www.cdc.gov/search.do?action=search&queryText=stari&x=13&y=10)

You see that Lyme is a term thrown around that actually includes a multitude of tick vector illnesses. The version of LD found in the south, Southern Tick Associated Rash Illness (STARI) is different enough from the northern LD to be awarded its own name but the CDC offers no advice in how to determine if a patient has STARI or how to treat it.
Because there is no set guidelines to treat LD many doctors are afraid to treat their patients for LD because they are afraid if they treat their patients aggressively with IV antibiotics they will lose their medical license or get in trouble with the insurance industry. Many people must pay for their LD treatment outside of their insurance plan. The costs are enormous.

And so many people, like you, are completely ignorant of all the horrible symptoms that are associated with LD. People with LD may look fine but have horrible symptoms. LD makes people exhausted and slow thinking -- thank God you have the energy to fight for the funding you need. If you go to LymeNet.org:

(http://flash.lymenet.org/scripts/forumdisplay.cgi?action=topics&forum=General+Support&number=3)

You will find hundreds of people that don't have the energy to type on a keyboard. Their only interaction with others is through the internet because their incredible exhaustion leaves them unable to leave the house. And with the public being so misinformed about LD individuals are afraid to tell anyone. If I had known how misunderstood LD was in my own situation I would have told no one but my closest friends and family.

On a personal note, my husband and I have LD. Over Christmas my two sons, ages three and seven, were diagnosed with LD. But doctors in this area will refuse to treat a child even with a bull's-eye rash on the body and the tick still attached in the center because "we don't have LD in the southeast." This actually happened to my nephew. If you do take the time to visit the CDC site you will see that the large bull's-eye rash is considered evidence enough to treat the illness.

My boys suffer terrible with this illness. Not only do they have muscle and joint aches as well as terrible fatigue (the cure for LD is almost worse than the illness itself) but my seven year old has hallucinations and hears voices -- all quite common for LD sufferers -- but difficult to explain to a seven year old.

If you do some research on LD you will find that LD bacteria has been found in the placenta, breastmilk, sperm, and the brain of a stillborn child who's mother had LD. So if you get your transplant you might want to screen whom ever you get the blood from -- the Red Cross isn't going to do it for you. You may actually find yourself joining our ranks.

When you talked so ignorantly about LD you actually weakened your own argument -- by throwing around statements with no bases in fact--the reader would have to question all your facts. So please, make the journey, do everything you have to to get the resources and money to help yourself and the disease funding you need, but DON'T step over my family to do it.

Sincerely,

I really enjoyed reading your letter. You did a great job.

Jan

Daily Bulletin
Los Angeles CA
March 13, 2005

I got the information in an email from Rose:

[email protected]

Thanks for the great words--I've never been told I wrote well before!

I try to email scientist who have discovered new lyme in north Italy and tell them "good job." And then I try to responf to people like this.

I am also a pest to my congressmen! ;-)

Me and my husband want to start a nonprofit in East Tennessee to educate the public. We just haven't had the energy to fill out all the paperwork!

I doubt that Emily Sachs will publish your letter in her column, but it is important to educate her. However, the editor might put a shorter version on the Op-ed page if they have any.

Here is where to go to send a letter to the editor. "Letters to the Editor" is part of the pull-down menu there.

Might be a good idea for a lot of us to contact the editor there.
http://www.dailybulletin.com/Stories/0,1413,203%257E24677%257E,00.html

Here is where the paper is located and the area it covers.
Inland Valley Daily Bulletin
2041 E. Fourth St.
Ontario, CA 91764

Serving Chino, Chino Hills, Claremont, Diamond Bar,Fontana, Jurupa Valley, Montclair, La Verne, Norco,Ontario, Pomona, Rancho Cucamonga, Rialto, San Dimas, Upland

I am glad to see good communication, cause I know I couldn't do it^%#$^%#$^%$

It's great that you have the energy and the wherewithall to follow thru with the letter..

Good luck and let us know if there is a response..

Maybe she has never met anyone with Lyme because she is on the west coast. Because it seems like every third person I meet has lyme here in the NE.

...daniella

Here is where to go to send a letter to the editor. "Letters to the Editor" is part of the pull-down menu there.

Might be a good idea for a lot of us to contact the editor there. http://www.dailybulletin.com/Stories/0,1413,203%257E24677%257E,00.html

(quote)
I was very touched by Emily Sachs' plea for more funding for Polysistic Kidney Disease in her recent column.

However, comparison was made to show that PKD deserved funding more than Lyme disease did. Ms Sachs said that with fewer cases and less importance, Lyme disease was getting more attention and funding for research than it deserved.

Comparisons like these are not helpful, especially when they are erroneous. I am devastated to hear that so many people have PKD, but there are about 24,000 NEW cases of Lyme disease reported to the CDC each year. These reported cases represent only about 1/10th of the actual cases as the disease is so poorly diagnosed and goes unreported. There are thousands and thousands of people who suffer Chronic Lyme disease. Research funds are low and are poorly used: There is still no accurate test and no reliable treatment.

I dearly wish Ms Sachs and all the other PKD patients receive the attention and help and research funds they deserve. I have the same wish for Lyme disease patients.
Attention must be paid and research for both devasting illness funded. (end quote)

Ann - OH