posted 26 January 2005 11:01               

The title of the article is-

Some Lyme Disease Web Sites Misinform -Study

Here is a link to the article- http://news.yahoo.com/news?tmpl=story&u=/nm/20050125/hl_nm/lyme_web_dc_1

#2 Today, 10:56 AM
Luvmycat
Distinguished Community Member Join Date: Mar 2004
Posts: 152

My response:

I read the article about Lyme disease and, apparently, those who wrote the article have never been stricken with it or had a loved one stricken with it. They are misinformed about the real facts. Getting Lyme is like any other serious disease. It's a battle and it's expensive. It's not a simple fix like the article makes it sound. I have no idea how, when or where I got it. Until I got stricken, I thought Lyme was just a bug bite, you did a couple of weeks on antibiotics and it was gone. Just for the year 2004 alone, I have paid out-of-pocket $8,700 in medical expenses and I have insurance!!!!

Read the posts over at LymeNet. That tells the real story. Read about the people who have died from complications of Lyme disease. Read about the people who have lost their jobs and benefits because they are no longer able to work because of Lyme disease. Read about the people who have lost their vision or hearing due to Lyme disease. Read about the people who have lost everything they had because an entire family had to be treated for Lyme disease.

The article insinuates that long-term antibiotics are not necessary. They most certainly are. I've been on antibiotics for almost a year now and the slightest decrease in any of them causes my symptoms to return. I went undiagnosed for so long, that my case is likely to be chronic--but that remains to be seen and I am hopeful that it's not. Lyme is a very difficult to eradicate especially once it penetrates the central nervous system. I do not go one day without symptoms. My husband also has it and has not worked for over two years--he is THAT debilitated. At the peak of his fatigue he was sleeping 20-22 hours a day. Left untreated, Lyme can be fatal.

The medical community as a whole is "Lyme resistant" for some reason. The doctors treating it are often subjects of a "witch hunt" by the medical community but actually they are pioneers in the field of Lyme and its co-infections and the rest of the medical community has not caught up with THEM yet. The doctor who treats my Lyme has credentials three pages long, has studied Lyme and its co-infections extensively and actually has Lyme himself.

Since I have been stricken with Lyme, I have had numerous articles in our local paper. Everytime one of my articles appears, I am on the phone every evening for at least a week. I get calls from people all over who have been suffering for years and have been misdiagnosed or not diagnosed at all or labeled a "kook." They are seeking answers that their doctors cannot give them. No wonder Lyme disease is referred to as a "plague of ignorance."

Before I was stricken with Lyme, I couldn't have cared less about it--now it's my passion to educate, inform and help others. I use my own time, leave days from work and money to do this. The authors of this article are next on my list to be educated. I plan on contacting them.

Luvmycat but hatemyLyme

[This message has been edited by luvmycat (edited 26 January 2005).]

posted 26 January 2005 12:37               

Here. http://news.yahoo.com/news?tmpl=story&u=/nm/20050125/hl_nm/lyme_web_dc_1

posted 26 January 2005 14:04               

I certainly wouldn't wish Lyme disease on anyone - not even those who publish such inaccurate info.
But....
If they had the opportunity to "experience" untreated Lyme disease for years, they would surely see the errors in their statements.

Until they have walked a mile in our shoes, they'll never understand how this disease can ruin a person's life!!!

posted 26 January 2005 15:19               

I saw the post on Neuromuscular,but this time I have to try to not get sucked in - it gets very draining as it infuriates me. Also, I think people like Starshipone likes to stir the pot.