Re: NIH may be more open minded than I once believed...

[Guest guest]

Jen - I am crossing my fingers for you and sending prayers..........I just am

worried that they will use this against you..........

Diane

________________________________

From: jen <tritherz@...>

Sent: Wed, March 2, 2011 10:03:29 AM

Subject: [ ] NIH may be more open minded than I once believed...

 

Hi everyone,

I was diagnsoed with RRMS in 2009. Not buying into the diagnosis led me to see

many different practioners, all of which gave me the same diagnosis. In 2010

after undergoing a new procedure for MS (CCSVI), I discovered I didn't have the

condition. This led to yet further digging into my " diagnosis " . I signed up for

a clinical trial at NIH. After several months, they gave the standard " you have

MS " diagnosis. I started the injections despite the fact that I still wasn't

convinced.

Several months later my older sister was diagnosed with chonic Lyme. That was my

" ah-ha " momement. I went to an infectious disease doc who diagnosed me with Lyme

based on clinal symptoms (I didn't test positive until I had the test through

Igenex done).

Recently, I decided to contact NIH to update them on my case. Instead of

completely dismissing it (which I fully anticipated), they asked that I fax my

new findings to them. I'm also getting ready to schedule my yearly follow-up,

though I don't revel in having more gadium pumped into my body for the MRI's!

This may mot go anywhere, but I still thought it was worthy of posting. I

haven't sent them anything yet as I'm trying to make sure to solidify my case as

much as possible prior to sending anything to them. this is most likely a

one-shot deal. Keep your fingers crossed for me!!

[Guest guest]

THis is good news.

I am firmly in the ILADS camp; and I believe there are some truly bad

doctors out there publishing on lyme; however I do not believe that the NIH

etc is completely evil . . . I think they are trying to do what they think

is best.

On Wed, Mar 2, 2011 at 11:27 AM, Diane Biel <dkbmama@...> wrote:

>

>

> Jen - I am crossing my fingers for you and sending prayers..........I just

> am

> worried that they will use this against you..........

> Diane

>

> ________________________________

> From: jen <tritherz@...>

>

> Sent: Wed, March 2, 2011 10:03:29 AM

> Subject: [ ] NIH may be more open minded than I once believed...

>

>

> Hi everyone,

> I was diagnsoed with RRMS in 2009. Not buying into the diagnosis led me to

> see

> many different practioners, all of which gave me the same diagnosis. In

> 2010

> after undergoing a new procedure for MS (CCSVI), I discovered I didn't have

> the

> condition. This led to yet further digging into my " diagnosis " . I signed up

> for

> a clinical trial at NIH. After several months, they gave the standard " you

> have

> MS " diagnosis. I started the injections despite the fact that I still

> wasn't

> convinced.

>

> Several months later my older sister was diagnosed with chonic Lyme. That

> was my

> " ah-ha " momement. I went to an infectious disease doc who diagnosed me with

> Lyme

> based on clinal symptoms (I didn't test positive until I had the test

> through

> Igenex done).

>

> Recently, I decided to contact NIH to update them on my case. Instead of

> completely dismissing it (which I fully anticipated), they asked that I fax

> my

> new findings to them. I'm also getting ready to schedule my yearly

> follow-up,

> though I don't revel in having more gadium pumped into my body for the

> MRI's!

>

> This may mot go anywhere, but I still thought it was worthy of posting. I

> haven't sent them anything yet as I'm trying to make sure to solidify my

> case as

> much as possible prior to sending anything to them. this is most likely a

> one-shot deal. Keep your fingers crossed for me!!

>

>

[Guest guest]

Hi Diane,

Yes, I have considered this too. I will make sure that I don't send them any

identifting information about the doctors I've seen. That's really the only way

the could use it against me. Other than that, this is all voluntary. So if if

opt out, I opt out.

Jen

>

> Jen - I am crossing my fingers for you and sending prayers..........I just am

> worried that they will use this against you..........

> Diane

>

>

>

>

> ________________________________

> From: jen <tritherz@...>

>

> Sent: Wed, March 2, 2011 10:03:29 AM

> Subject: [ ] NIH may be more open minded than I once believed...

>

>  

> Hi everyone,

> I was diagnsoed with RRMS in 2009. Not buying into the diagnosis led me to see

> many different practioners, all of which gave me the same diagnosis. In 2010

> after undergoing a new procedure for MS (CCSVI), I discovered I didn't have

the

> condition. This led to yet further digging into my " diagnosis " . I signed up

for

> a clinical trial at NIH. After several months, they gave the standard " you

have

> MS " diagnosis. I started the injections despite the fact that I still wasn't

> convinced.

>

>

> Several months later my older sister was diagnosed with chonic Lyme. That was

my

> " ah-ha " momement. I went to an infectious disease doc who diagnosed me with

Lyme

> based on clinal symptoms (I didn't test positive until I had the test through

> Igenex done).

>

>

> Recently, I decided to contact NIH to update them on my case. Instead of

> completely dismissing it (which I fully anticipated), they asked that I fax my

> new findings to them. I'm also getting ready to schedule my yearly follow-up,

> though I don't revel in having more gadium pumped into my body for the MRI's!

>

> This may mot go anywhere, but I still thought it was worthy of posting. I

> haven't sent them anything yet as I'm trying to make sure to solidify my case

as

> much as possible prior to sending anything to them. this is most likely a

> one-shot deal. Keep your fingers crossed for me!!

>

>

>

>

>

>

>

>

[Guest guest]

Hi ,

Yes, me too. While speaking with the doc at NIH, she was understandably a little

defensive. She's the one who diasnosed me with MS, so I completely understood.

When I told her that I " instinctually " felt as though I was on the right track

now, she did indicate that she places a lot of credit on instinct based

diagnosises. To me, that speaks volumes about her as a doctor. If I go there and

have no further progression (which I fully anticipate), then maybe they will

look into this more. The doc indicated that she is, above all, a research

doctor. That being said, I believe she's less interested in being " right " and

more interested in the truth.

Jen

>

> >

> >

> > Jen - I am crossing my fingers for you and sending prayers..........I just

> > am

> > worried that they will use this against you..........

> > Diane

> >

> > ________________________________

> > From: jen <tritherz@...>

> >

> > Sent: Wed, March 2, 2011 10:03:29 AM

> > Subject: [ ] NIH may be more open minded than I once believed...

> >

> >

> > Hi everyone,

> > I was diagnsoed with RRMS in 2009. Not buying into the diagnosis led me to

> > see

> > many different practioners, all of which gave me the same diagnosis. In

> > 2010

> > after undergoing a new procedure for MS (CCSVI), I discovered I didn't have

> > the

> > condition. This led to yet further digging into my " diagnosis " . I signed up

> > for

> > a clinical trial at NIH. After several months, they gave the standard " you

> > have

> > MS " diagnosis. I started the injections despite the fact that I still

> > wasn't

> > convinced.

> >

> > Several months later my older sister was diagnosed with chonic Lyme. That

> > was my

> > " ah-ha " momement. I went to an infectious disease doc who diagnosed me with

> > Lyme

> > based on clinal symptoms (I didn't test positive until I had the test

> > through

> > Igenex done).

> >

> > Recently, I decided to contact NIH to update them on my case. Instead of

> > completely dismissing it (which I fully anticipated), they asked that I fax

> > my

> > new findings to them. I'm also getting ready to schedule my yearly

> > follow-up,

> > though I don't revel in having more gadium pumped into my body for the

> > MRI's!

> >

> > This may mot go anywhere, but I still thought it was worthy of posting. I

> > haven't sent them anything yet as I'm trying to make sure to solidify my

> > case as

> > much as possible prior to sending anything to them. this is most likely a

> > one-shot deal. Keep your fingers crossed for me!!

> >

> >

[Guest guest]

I'm kind of excited for you. Good luck!

>

> >

> >

> > Jen - I am crossing my fingers for you and sending prayers..........I just

> > am

> > worried that they will use this against you..........

> > Diane

> >

> > ________________________________

> > From: jen <tritherz@...>

> >

> > Sent: Wed, March 2, 2011 10:03:29 AM

> > Subject: [ ] NIH may be more open minded than I once believed...

> >

> >

> > Hi everyone,

> > I was diagnsoed with RRMS in 2009. Not buying into the diagnosis led me to

> > see

> > many different practioners, all of which gave me the same diagnosis. In

> > 2010

> > after undergoing a new procedure for MS (CCSVI), I discovered I didn't have

> > the

> > condition. This led to yet further digging into my " diagnosis " . I signed up

> > for

> > a clinical trial at NIH. After several months, they gave the standard " you

> > have

> > MS " diagnosis. I started the injections despite the fact that I still

> > wasn't

> > convinced.

> >

> > Several months later my older sister was diagnosed with chonic Lyme. That

> > was my

> > " ah-ha " momement. I went to an infectious disease doc who diagnosed me with

> > Lyme

> > based on clinal symptoms (I didn't test positive until I had the test

> > through

> > Igenex done).

> >

> > Recently, I decided to contact NIH to update them on my case. Instead of

> > completely dismissing it (which I fully anticipated), they asked that I fax

> > my

> > new findings to them. I'm also getting ready to schedule my yearly

> > follow-up,

> > though I don't revel in having more gadium pumped into my body for the

> > MRI's!

> >

> > This may mot go anywhere, but I still thought it was worthy of posting. I

> > haven't sent them anything yet as I'm trying to make sure to solidify my

> > case as

> > much as possible prior to sending anything to them. this is most likely a

> > one-shot deal. Keep your fingers crossed for me!!

> >

> >