Hopefully, some doctors will see it and take interest!

I am so looking forward to that conference and meeting everyone!

Carol
 

Linda

[This message has been edited by Linda LD (edited 10 May 2005).]
 

Bettyg
 

Conference on Lyme disease scheduled

By MICHELE NEWBANKS, Tribune News Editor

Local resident Carol Cline knows how tough it is to find doctors knowledgeable about Lyme disease.

After years of visits to the emergency room and 14 different doctors, she finally learned that she had symptoms of Lyme.

She hopes a two-day conference which will be held May 21-22 in Reston, Va., will help both patients and doctors to learn more about the disease.

"The conference will be an excellent opportunity for patients, as well as physicians, to gather information about the testing, diagnosis and treatment of Lyme disease," she said. "There is

a lot of up-to-date information of which physicians need to be aware."

During the conference, attendees will learn the latest on Lyme diagnosis, testing and treatment, get the latest on antibiotic treatments being used to treat Lyme and learn strategies to get relief from common symptoms. Nutrition strategies for Lyme patients and dietary supplements will also be discussed.

Cline said one of the biggest problems is that there are no Lyme-literate doctors in the area.

"My Lyme doctor in Washington, D.C., has 1,200 patients. There is another doctor in the Lutherville area who is a neurologist and also treats Lyme. She has 500 patients," Cline said. "They occasionally have to close their practices to new patients, which leaves someone helpless if he or she has the disease and needs treatment.

"Since Lyme can be so insidious and the patient doesn't always recall a bite, it's not always recognized in the early stages and can be missed for months and even years, as was my experience. Lyme specialists are adept at treating advanced cases of Lyme."

The conference, which is sponsored by Hope to Heal Lyme Inc., is designed for patients diagnosed with Lyme; patients who suspect they have it, but have not been diagnosed; patients suffering from chronic fatigue and fibromyalgia; caregivers; doctors and psychiatrists currently treating Lyme; and doctors who are interested in learning more about the disease.

"Lyme doctors are over-burdened and there needs to be more of them," Cline said. "I am hoping that we can get a Lyme-literate M.D. in this area. It is a problem that is not going to go away and we need to prepare."

To find out more about the conference, call Hope to Heal Lyme at (540) 338-2181 or e-mail [email protected].

 

$265 is way too much when you are not a 501(C)(3) organization. If lyme victims have that much money, they do not need help with medical bills and drugs.

I understand they will make a large profit from this and have put on events like this before for the profil of two professional women.
 

Ever try to get a free doctors appointment? Free meds? It all costs and I agree none of us have the money for this disease. This confrence is just out there if you want to go.

Let's not bash those trying to help,

robi

[This message has been edited by robi (edited 11 May 2005).]
 

Seems highly unlikely these docs would be doing this conference if it were only benefitting the organizers.

[This message has been edited by lou (edited 11 May 2005).]
 

Do not be fooled. We get the doctors to come for free. All of a sudden they pay them something. This is not right.

Also, the DC chapter says the same thing, they are out to make money. You tell me where there money is going. This really upset my daughter to use our lyme victims this way. Look into this group, two professional woman.
Lou, I will send an email to you to show you the answer my daughter got from them. Then you will know what is going on.
 

Ask if they are paying our doctors to go and how much. Look into the details. Our DC group also knows the answere and they are not pretty.

 

There is certainly some value in organizing such a conference, getting the word out, and the facilities are going to cost something. And travel and lodging for the speakers should be paid. So, even if this is a money-making venture, would still be useful on several grounds. Where else would people have access to all these experts? And there are costs to be paid out of the proceeds.

But, I must say I am disappointed that it is not fundraising for lyme causes. Not that small fundraisers will do it. Think at best they call attention to the problem, which will hopefully attract deep pockets at some point.

Don't understand why the deep pockets have not come to our rescue. There certainly are lyme cases in that group of people. So, how come they don't jump in and guarantee the establishment of the Columbia center and fund some high powered studies to lend weight to our beleaguered docs?

[This message has been edited by lou (edited 11 May 2005).]
 

The two women putting on the conference both have lyme. They live in an area where lyme disease is on a rise and there are relatively few doctors in the area that treat it. I am glad they are bringing it to the forefront.

It is my understanding that they are just trying to cover their costs. They are having 9 lyme drs. who they have to pay for 2 days plus an author and several other speakers. These people do not donate their time. Also, renting any hotel close to the DC area,big enough for a two day conference including lunch is going to cost big bucks!
I think they were doing this to be close to 2 major airports and provide Free transportation shuttle from the airports.

I know of someone who could not afford to go, and the scholarships had all been given, so one of the sponsors got the money donated from her church so this person could attend.

If you don't believe in the conference or can't afford to go, that's your choice, but don't ruin it for the people doing it or the people attending it by spreading negative press!
 

I'm not going to go into a long diatribe, but I will say that our intentions were not to make money off this event and we have granted approximately 30 scholarship registrations to people who are on disability or have multiple family members with this disease. We did choose to have the event in a large conference facility, which is not cheap.

As for the Pat Smith comment...the reality is that she was one of the first people we personally invited as our guest (after locking in speakers) and she stated that she had a fund raising event around that time and declined the invitation. The politics in the Lyme community are holding back our progress with this disease and it has to stop. We need to embrace everyone's attempts and stop polarizing.

Thank you to those who have defended our position in bringing education to our local community about this terrible disease. It's going to be a great conference!

 

I've volunteered at enough public events that I don't begrudge the principals making a few bucks for themselves if they're not 501(c)3.

The event in CT must have had strong sponsorship to keep the costs down to attendees.
 

I am one of the people with the 'Angel Scholarships' since 3 in my family are being treated for lyme - i found this very generous.

My GP who is lyme literate (one of the few in our area) is also speaking at the conference and has told me how important she thinks it will be. I know how many patients she has and how much mis-information is out there just where I live, so getting the right information to these people is very important.

And like another poster said, nothing is cheap in this area - plus there are many speakers, as much as they might want to give of their time for free, i seriously doubt that they do (speculation but I imagine they are being paid). The venue is being paid, and the support group I believe will make money for lyme disease - not to put in their pockets.

This is the first time that more than 1 or 2 speakers have been in the area (that I know of) since I've been dx'd with lyme and I imagine it takes money to get this together.

I am very much looking forward to going this weekend - and learning as much as I can to help myself and my 2 children.

Thank you for this opportunity.