Re: NIH and treatment

[Guest guest]

At 11:17 PM 8/9/2004, you wrote:

>Hi,

>I have been going to NIh for the EDS study for years (under the old protocol

>and was the first under this new one) and also as an inpatient for the POTS

>protocol.

>

>This new protocol, being located in Baltimore, is more restricted in what

>they can do outside of the strict language of the protocol. In the past,

>they

>had all the resources of the clinical center and it was just easier to have

>testing done that you needed and treatment as needed. There is hope that

>they will

>have more resources and opportunities at Bayview(the hospital in Baltimore)

>before long.

>There are many people who even have surgery at NIH. Usually, treatment is

>reserved for those protocols that are called " treatment protocols " .

>I hope that this makes sense...at least a little bit.To sum it up...they are

>limited to what the protocol calls for.

>

>PS.. I hope to see Clair Francomano in about ten days and will talk to her

>about this if I have the opportunity

,

When you got started in the new location, did they contact you or did you

have to get in touch with them? I was participating in the study at NIH in

Bethesda. When they left, I received a letter informing me of their knew

location and telling me I would be contacted when they were " up and

running " . I never heard anything more about the study from them.

Cindy L

(I just rejoined the CEDAlist last week.)

[Guest guest]

Hi Cindy,

My appt. at s Hopkins is on the 17th at 10:50. I will either take the

6:05am train up(which is reallllllllyyyyyy early and hard) or Mike will drive

me.

He has only done it once and with a new job and all I doubt he will. It would

make it easier to get over to Bayview which Clair, and Dr. McDonnell told me

was a LONG taxi ride. They were going to drive me over but then I had that bad

POTS episode and didn't make it to the appt after being at NIH for a couple

of days. They did drive me to the train station later b/c they were 1. so sweet

and 2. were worried I'd faint again.

What day are you getting in to Baltimore? I know that Monday and Tuesday and

then Thursday and Friday are most of their appts.If you are seeing Clair on

Tuesday, I guess she won't be having lunch with me then. I guess she hadn't

checked her schedule when she wrote me and suggested it!! I haven't talked to

her yet about it. I really wish I could see you then. Maybe we can figure

something out!! It's just to close of a chance!

In a message dated 8/9/04 11:40:13 PM Eastern Daylight Time,

c-clark05@... writes:

> ,

> Dylan and I will be there the 17th and 18th. &days. Sounds like we will miss

> you :~( So close!

> I'll email you at home, I have a few questions.

> Cindylouwho

>

> Re: NIH and treatment

>

[Guest guest]

Oh, Dianna, if we could meet that would be wonderful! We arrive at Bay View

Monday evening, maybe 8 pm? The 16th, next Monday.It depends on the shuttle.

Testing starts at 10 AM, Tuesday, most all the tests at Tues. I don't know our

room # yet, but You can ask for Cindy or Dylan Keil. Probably it will be

in his name. Notice that his name is spelled oddly. I'm hoping to meet S

in the evening around dinner. She is driving 2 hours to get there, if she is up

to it. The staff said I can't leave to have dinner with her, but I'm hoping we

can at least have some time in the parking lot away from it all. And.. If I

can't smoke for two days, I'll go crazy!!!

We leave Wednesday around 3 PM to make our 6 PM flight. I will see Clair at some

point, but I don't know when that will be. Maybe she is having lunch with you at

JH. Time will tell if we can meet. It would be great. We'll just have to see how

it works out that day, and how you feel. I hope it works out to see you. We'll

be so close!

Cindylouwho

Re: NIH and treatment

>