town Study - I'm back, long sorry

[Guest guest]

Hi everyone,

I am back from town and I am going to write up my experiences

and what I learned soon. Just going to rest the next couple of days.

But I did want you to know that it went extremely well - beyond my

expectations. I DID NOT GET A HEADACHE. I did not crash from the

travel due to my precautions and their care. About 1%-4% of normals

get a spinal tap headache but they are finding it higher in our

group. At one point, the rate was 12-15%. They have modified the

protocol somewhat as they have learned what is causing the spinal

headache for our community and they are hoping that the rates go

down to a more normal level. I kept my self hydrated, they had me on

IVs for hydration and I was kept flat. Either Dr. Ravindran or the

nurses handled my luggage - I had strict instructions from Dr.

Baraniuk to NOT carry my luggage or bend over. I think it is too

early, statistically, to reformulate the numbers but the last group

of people plus myself, have not gotten the headache. It seems that

as long as you are hydrated and do not bend over and stay horizontal

for a while and do not strain abdominal area, you may be okay. (I

did actually bend over a little, I just kept forgetting but I did

not bend all the way over.)

The research team members are highly motivated, compassionate,

committed, and bursting from the seams with integrity. Dr. Baranuik

is a very intelligent man & directs his staff to be aware of our

condition in the most incredible way. I was not treated as a number

in a study. They even posted a sign on the door - DO NOT WAKE UNTIL

NOON as they are very aware of the sleep issues. Also, I was in a

wing set up for these various studies - I was not near the general

population so I did not have concerns about MRSA or catching

anything nor did I have all the activity of a regular hospital

ward. (Even so, no one came in the room without treating their

hands with antibacterial goop). Dr. Ravindran was available for

questions almost continuously. I have learned a lot about this

illness. THEY UNDERSTAND! Their motto is " It really is all in your

head " . They believe this is a neurological illness and the brain is

the source of most of the nerves in our bodies, which is why they

are searching for biomarkers, subset groupings, then causes and in

future, treatments.

While it was exhausting, it was like a vacation in that I was

surrounded by medical professionals that understood every nuance of

my illness. They also made me feel like an integral part of the team

and they stressed repeatedly that they were learning from us.

In the 9 years of my illness, I have never experienced the level of

care, medical knowledge and compassion as I rec'd in the 2 days that

I was at town University (except in conversations with Rich by

email or list). I had a history intake appt with the principal

investigator, Dr. Baraniuk, and he brought up possibilities that I

had never considered. He was there for as long as it took - little

over three hours. This was after he had a very long clinical day,

meetings with NIH, putting out fires and still, I had his complete

attention and then he allowed me to ask as many questions as I

wanted to ask. He is a rheumatologist, allergist and immunologist!

Dr. Ravindran was a very gracious Doctor (he is a neurologist) and

was available for all of my questions. No question was refused or

turned away. He was truly concerned for my health and he treated me

very respectfully. They carefully control the number of people

coming in to 2 per week so that they can be certain that they are

not missing a critical piece of information or clue to our illness

and to make sure that they can provide the best of care during what

is a difficult time for us. These Dr's do not want to make any

mistakes in our care by rushing several people through in one week.

They both understand the difficulty and the risk that we take to

participate in a study such as this and did all they could to make

it uneventful. They especially appreciate out of towners as they

don't want to skew the results by having all New Englanders. I don't

know how many times I was thanked for participating, for getting off

meds. At first, I didn't understand why these procedures could not

be done near our homes but I learned that their lab has some very

expensive equipment ($millions) and the CSF is processed immediately

by both researchers. My 4 little vials of fluid took priority over

NIH meetings, clinical appts, conference calls, etc. They scheduled

their day around my lumbar puncture (which was really not bad, my

nervousness about it was worse that it was). The only pain I had

was one little prick for the numbing agent. The research Doctors

did not perform the puncture, it was done in radiology with trained

Dr. with a fluoroscope machine (form of x ray) so that I would not

have any issues.

I promise to write more later as I put down my thoughts. I may not

respond to messages today, I am going to rest as I still have 4 days

to exercise caution in order to not get a headache. Just wanted to

share how it went.

Marti