Re: Re: Read this on the list

[Guest guest]

Hey Lucy,

If you want to call me you can - 205-683-6343.

________________________________

From: LucyT <lucy1628@...>

Sent: Wed, August 18, 2010 6:52:35 PM

Subject: Re: Read this on the list

 

,

What are you taking for CFS? My son (16 yrs. old) has been fatigued for

6 months...... sleeps 16 to 20 + hrs. Started LDN 2 weeks ago from 1

mg./day for a week and 2 mg./day for the 2nd week. Currently taking 3

mg and will take 4 mg next week. But he still sleeps 17 + hrs. and

waking up tired. He is scheduled to see Dr. G. at the end of Sept. for

the first time and I am wondering how Dr. G will help him immediately

and worried how he is going to handle the school work meanwhile. Any

advise will be appreciated!

Lucy

>

> OOps!

> So when she said they could have a diagnostic test and immune profiles

that show

> people's immune systems going back to normal, would that mean that

they have

> already started treatment on some people (I do know someone over

there has given

> at least one acute patient anti-retrovirals) - have they already

observed an

> immune system returning to normal and now they're going to do enough

study to

> document it?

>

> There are lots of case studies showing often complete remission of

speech

> problems and remission of autistic symptoms in HIV positive kids after

being

> treated with antiretrovirals.

>

> Oh God I'm dying for more information! lol. I want to move to

Reno and get a

> job at WPI so bad I can't stand it.

>

> Hope.

> Hope.

> Hope!

>

>

>

>

>

>

> ________________________________

> From: and Marcia Hinds hindssite@...

> mb12 valtrex ;

> Cc: jlhank80@...

> Sent: Tue, August 17, 2010 1:44:42 PM

> Subject: Read this on the list

>

> Â

>

> I read this on the <mailto:

list

> and thought this new discovery would be helpful to many of our viral

kids.

> Dr. Goldberg is in Reno this week for a meeting and conference with

Dr.

> Mikovits and others. The Nids list is a great source of info for Dr.

G’s

> protocol.

>

> Best,

>

> Marcia

>

>

</message/43874;_ylc=X3oDMTJxOWY4MDNrBF9TA

>

zk3MzU5NzE1BGdycElkAzEyODk0MARncnBzcElkAzE3MDUwNjE2MTYEbXNnSWQDNDM4NzQEc\

2VjA

> 2Rtc2cEc2xrA3Ztc2cEc3RpbWUDMTI4MjA1NTMzMA--> Findings by Reno

scientists

> confirmed by U.S. government

>

> Posted by: " "

> <mailto:jlhank80@...?Subject=%20Re%3AFindings%20by%20Reno%20scientists

> %20confirmed%20by%20U%2ES%2E%20government> jlhank80@...

> <jlhank80> jlhank80

>

> Mon Aug 16, 2010 11:25 pm (PDT)

>

> <http://www.rgj.com/article/20100816/NEWS/100816069/1321>

> http://www.rgj.com/article/20100816/NEWS/100816069/1321

>

> Findings by Reno scientists confirmed by U.S. government

> LENITA POWERS • <mailto:lpowers%40rgj.com> lpowers@... •

August 16,

> 2010

>

> Two Reno scientists, who last year discovered a new infectious human

> retrovirus they linked to Chronic Fatigue Syndrome, said Monday that

their

> findings have been replicated and confirmed by the U.S. Food and Drug

> Administration.

>

> Dr. Judy Mikovits, one of the lead researchers with the Whittemore

> Institute for Neuro-Immune Disease in Reno, said the FDA's review of

their

> findings is scheduled to be published in September.

>

> " There has been an issue over whether anybody could replicate our

study, and

> it will not only confirm our findings but extend our findings, which

is

> really exciting for us, " she said.

>

> Mikovits said they also have new, unpublished data concerning the

> retrovirus, XMRV, that could lead to treatment of Chronic Fatigue

Syndrome.

>

> " We have immune system profiles and we can tell by the immune system

how the

> XMRV is doing the damage, " she said. " So we could have a diagnostic

test to

> follow clinical treatment and show that people's immune systems go

back to

> normal. That's the latest data that's really amazing. That's what

we're

> after. "

>

> That data will be published by the end of the year, probably in a

clinical

> immunology journal, she said.

>

> Lombardi said clinical trials could begin soon at the Whittemore

> Institute, which is relocating from its tiny laboratory on the

University of

> Nevada, Reno campus to the university's newly opened Center for

Molecular

> Medicine.

>

> " Actually, we already have been contacted by people who are sending us

> tests, perceiving that they may be asked to be part of the clinical

trials, "

> he said.

>

> " I think once the (FDA) paper comes out and once the controversy is

put to

> rest, the pharmaceutical companies will realize that this is some very

> low-hanging fruit for them to make the next transition, " said

Lombardi.

> " There are so many drugs that have been developed for HIV, and it's a

> retrovirus. So there's probably a ton of HIV drugs that they can go

back and

> re-screen that could be used. "

>

> There also are three published drugs that work against XMRV, Mikovits

said.

>

> " We totally expect at least one clinical treatment trial before the

end of

> the year, " she said. " That is our goal and that's what this new

facility is

> for. "

>

>

[Guest guest]

Hey ,

I tried to email you earlier but I think it didn't go thru... I'll try again.

I thought of something that might be immediately helpful for your son - Provigil

or the newer version, Nuvigil.

It's a narcilepsy drug also used for excessive daytime somnolence, and Dr Klimas

and some other top CFIDS doctors are starting to use it in CFIDS too.  You may

be able to google Dr Klimas and provigil and print something off to ask your

doctor.  I don't know if it's used for your son's age group but I do know a few

docs have tried it in younger kids.

Some people w/CFS are saying it changed their lives.  My husband is very happy

about how it's helping him.  A psychiatrist recently gave it to him because he

has been so flat and unmotivated etc, and he feels brighter and so much more

aware of his environmnt.  He's very excited about it.

Please look into it (read a bit) it's the only thing I can think of that might

have an immediate difference for him.  It would be worth asking about. 

HTH-

________________________________

From: LucyT <lucy1628@...>

Sent: Wed, August 18, 2010 6:52:35 PM

Subject: Re: Read this on the list

 

,

What are you taking for CFS? My son (16 yrs. old) has been fatigued for

6 months...... sleeps 16 to 20 + hrs. Started LDN 2 weeks ago from 1

mg./day for a week and 2 mg./day for the 2nd week. Currently taking 3

mg and will take 4 mg next week. But he still sleeps 17 + hrs. and

waking up tired. He is scheduled to see Dr. G. at the end of Sept. for

the first time and I am wondering how Dr. G will help him immediately

and worried how he is going to handle the school work meanwhile. Any

advise will be appreciated!

Lucy

>

> OOps!

> So when she said they could have a diagnostic test and immune profiles

that show

> people's immune systems going back to normal, would that mean that

they have

> already started treatment on some people (I do know someone over

there has given

> at least one acute patient anti-retrovirals) - have they already

observed an

> immune system returning to normal and now they're going to do enough

study to

> document it?

>

> There are lots of case studies showing often complete remission of

speech

> problems and remission of autistic symptoms in HIV positive kids after

being

> treated with antiretrovirals.

>

> Oh God I'm dying for more information! lol. I want to move to

Reno and get a

> job at WPI so bad I can't stand it.

>

> Hope.

> Hope.

> Hope!

>

>

>

>

>

>

> ________________________________

> From: and Marcia Hinds hindssite@...

> mb12 valtrex ;

> Cc: jlhank80@...

> Sent: Tue, August 17, 2010 1:44:42 PM

> Subject: Read this on the list

>

> Â

>

> I read this on the <mailto:

list

> and thought this new discovery would be helpful to many of our viral

kids.

> Dr. Goldberg is in Reno this week for a meeting and conference with

Dr.

> Mikovits and others. The Nids list is a great source of info for Dr.

G’s

> protocol.

>

> Best,

>

> Marcia

>

>

</message/43874;_ylc=X3oDMTJxOWY4MDNrBF9TA

>

zk3MzU5NzE1BGdycElkAzEyODk0MARncnBzcElkAzE3MDUwNjE2MTYEbXNnSWQDNDM4NzQEc\

2VjA

> 2Rtc2cEc2xrA3Ztc2cEc3RpbWUDMTI4MjA1NTMzMA--> Findings by Reno

scientists

> confirmed by U.S. government

>

> Posted by: " "

> <mailto:jlhank80@...?Subject=%20Re%3AFindings%20by%20Reno%20scientists

> %20confirmed%20by%20U%2ES%2E%20government> jlhank80@...

> <jlhank80> jlhank80

>

> Mon Aug 16, 2010 11:25 pm (PDT)

>

> <http://www.rgj.com/article/20100816/NEWS/100816069/1321>

> http://www.rgj.com/article/20100816/NEWS/100816069/1321

>

> Findings by Reno scientists confirmed by U.S. government

> LENITA POWERS • <mailto:lpowers%40rgj.com> lpowers@... •

August 16,

> 2010

>

> Two Reno scientists, who last year discovered a new infectious human

> retrovirus they linked to Chronic Fatigue Syndrome, said Monday that

their

> findings have been replicated and confirmed by the U.S. Food and Drug

> Administration.

>

> Dr. Judy Mikovits, one of the lead researchers with the Whittemore

> Institute for Neuro-Immune Disease in Reno, said the FDA's review of

their

> findings is scheduled to be published in September.

>

> " There has been an issue over whether anybody could replicate our

study, and

> it will not only confirm our findings but extend our findings, which

is

> really exciting for us, " she said.

>

> Mikovits said they also have new, unpublished data concerning the

> retrovirus, XMRV, that could lead to treatment of Chronic Fatigue

Syndrome.

>

> " We have immune system profiles and we can tell by the immune system

how the

> XMRV is doing the damage, " she said. " So we could have a diagnostic

test to

> follow clinical treatment and show that people's immune systems go

back to

> normal. That's the latest data that's really amazing. That's what

we're

> after. "

>

> That data will be published by the end of the year, probably in a

clinical

> immunology journal, she said.

>

> Lombardi said clinical trials could begin soon at the Whittemore

> Institute, which is relocating from its tiny laboratory on the

University of

> Nevada, Reno campus to the university's newly opened Center for

Molecular

> Medicine.

>

> " Actually, we already have been contacted by people who are sending us

> tests, perceiving that they may be asked to be part of the clinical

trials, "

> he said.

>

> " I think once the (FDA) paper comes out and once the controversy is

put to

> rest, the pharmaceutical companies will realize that this is some very

> low-hanging fruit for them to make the next transition, " said

Lombardi.

> " There are so many drugs that have been developed for HIV, and it's a

> retrovirus. So there's probably a ton of HIV drugs that they can go

back and

> re-screen that could be used. "

>

> There also are three published drugs that work against XMRV, Mikovits

said.

>

> " We totally expect at least one clinical treatment trial before the

end of

> the year, " she said. " That is our goal and that's what this new

facility is

> for. "

>

>

[Guest guest]

Oh I did not mean for that to go on the list....

________________________________

From: <thecolemans4@...>

Sent: Sun, August 29, 2010 9:12:12 PM

Subject: Re: Re: Read this on the list

 

Hey ,

I tried to email you earlier but I think it didn't go thru... I'll try again.

I

[Guest guest]

Smooth, have fun.

________________________________

From: <thecolemans4@...>

Sent: Mon, August 30, 2010 11:07:38 AM

Subject: Re: Re: Read this on the list

Oh I did not mean for that to go on the list....

________________________________

From: <thecolemans4@...>

Sent: Sun, August 29, 2010 9:12:12 PM

Subject: Re: Re: Read this on the list

Hey ,

I tried to email you earlier but I think it didn't go thru... I'll try again.

I

[Guest guest]

Hi ,

Thank you very much for this information.  I'll read about this med. and talk

to

my son's doctor about it.  Appreciate your concern!

Lucy

________________________________

From: <thecolemans4@...>

Sent: Sun, August 29, 2010 7:12:12 PM

Subject: Re: Re: Read this on the list

 

Hey ,

I tried to email you earlier but I think it didn't go thru... I'll try again.

I thought of something that might be immediately helpful for your son - Provigil

or the newer version, Nuvigil.

It's a narcilepsy drug also used for excessive daytime somnolence, and Dr Klimas

and some other top CFIDS doctors are starting to use it in CFIDS too.  You may

be able to google Dr Klimas and provigil and print something off to ask your

doctor.  I don't know if it's used for your son's age group but I do know a few

docs have tried it in younger kids.

Some people w/CFS are saying it changed their lives.  My husband is very happy

about how it's helping him.  A psychiatrist recently gave it to him because he

has been so flat and unmotivated etc, and he feels brighter and so much more

aware of his environmnt.  He's very excited about it.

Please look into it (read a bit) it's the only thing I can think of that might

have an immediate difference for him.  It would be worth asking about. 

HTH-

________________________________

From: LucyT <lucy1628@...>

Sent: Wed, August 18, 2010 6:52:35 PM

Subject: Re: Read this on the list

 

,

What are you taking for CFS? My son (16 yrs. old) has been fatigued for

6 months...... sleeps 16 to 20 + hrs. Started LDN 2 weeks ago from 1

mg./day for a week and 2 mg./day for the 2nd week. Currently taking 3

mg and will take 4 mg next week. But he still sleeps 17 + hrs. and

waking up tired. He is scheduled to see Dr. G. at the end of Sept. for

the first time and I am wondering how Dr. G will help him immediately

and worried how he is going to handle the school work meanwhile. Any

advise will be appreciated!

Lucy

>

> OOps!

> So when she said they could have a diagnostic test and immune profiles

that show

> people's immune systems going back to normal, would that mean that

they have

> already started treatment on some people (I do know someone over

there has given

> at least one acute patient anti-retrovirals) - have they already

observed an

> immune system returning to normal and now they're going to do enough

study to

> document it?

>

> There are lots of case studies showing often complete remission of

speech

> problems and remission of autistic symptoms in HIV positive kids after

being

> treated with antiretrovirals.

>

> Oh God I'm dying for more information! lol. I want to move to

Reno and get a

> job at WPI so bad I can't stand it.

>

> Hope.

> Hope.

> Hope!

>

>

>

>

>

>

> ________________________________

> From: and Marcia Hinds hindssite@...

> mb12 valtrex ;

> Cc: jlhank80@...

> Sent: Tue, August 17, 2010 1:44:42 PM

> Subject: Read this on the list

>

> Â

>

> I read this on the <mailto:

list

> and thought this new discovery would be helpful to many of our viral

kids.

> Dr. Goldberg is in Reno this week for a meeting and conference with

Dr.

> Mikovits and others. The Nids list is a great source of info for Dr.

G’s

> protocol.

>

> Best,

>

> Marcia

>

>

</message/43874;_ylc=X3oDMTJxOWY4MDNrBF9TA

>

zk3MzU5NzE1BGdycElkAzEyODk0MARncnBzcElkAzE3MDUwNjE2MTYEbXNnSWQDNDM4NzQEc\

2VjA

> 2Rtc2cEc2xrA3Ztc2cEc3RpbWUDMTI4MjA1NTMzMA--> Findings by Reno

scientists

> confirmed by U.S. government

>

> Posted by: " "

> <mailto:jlhank80@...?Subject=%20Re%3AFindings%20by%20Reno%20scientists

> %20confirmed%20by%20U%2ES%2E%20government> jlhank80@...

> <jlhank80> jlhank80

>

> Mon Aug 16, 2010 11:25 pm (PDT)

>

> <http://www.rgj.com/article/20100816/NEWS/100816069/1321>

> http://www.rgj.com/article/20100816/NEWS/100816069/1321

>

> Findings by Reno scientists confirmed by U.S. government

> LENITA POWERS • <mailto:lpowers%40rgj.com> lpowers@... •

August 16,

> 2010

>

> Two Reno scientists, who last year discovered a new infectious human

> retrovirus they linked to Chronic Fatigue Syndrome, said Monday that

their

> findings have been replicated and confirmed by the U.S. Food and Drug

> Administration.

>

> Dr. Judy Mikovits, one of the lead researchers with the Whittemore

> Institute for Neuro-Immune Disease in Reno, said the FDA's review of

their

> findings is scheduled to be published in September.

>

> " There has been an issue over whether anybody could replicate our

study, and

> it will not only confirm our findings but extend our findings, which

is

> really exciting for us, " she said.

>

> Mikovits said they also have new, unpublished data concerning the

> retrovirus, XMRV, that could lead to treatment of Chronic Fatigue

Syndrome.

>

> " We have immune system profiles and we can tell by the immune system

how the

> XMRV is doing the damage, " she said. " So we could have a diagnostic

test to

> follow clinical treatment and show that people's immune systems go

back to

> normal. That's the latest data that's really amazing. That's what

we're

> after. "

>

> That data will be published by the end of the year, probably in a

clinical

> immunology journal, she said.

>

> Lombardi said clinical trials could begin soon at the Whittemore

> Institute, which is relocating from its tiny laboratory on the

University of

> Nevada, Reno campus to the university's newly opened Center for

Molecular

> Medicine.

>

> " Actually, we already have been contacted by people who are sending us

> tests, perceiving that they may be asked to be part of the clinical

trials, "

> he said.

>

> " I think once the (FDA) paper comes out and once the controversy is

put to

> rest, the pharmaceutical companies will realize that this is some very

> low-hanging fruit for them to make the next transition, " said

Lombardi.

> " There are so many drugs that have been developed for HIV, and it's a

> retrovirus. So there's probably a ton of HIV drugs that they can go

back and

> re-screen that could be used. "

>

> There also are three published drugs that work against XMRV, Mikovits

said.

>

> " We totally expect at least one clinical treatment trial before the

end of

> the year, " she said. " That is our goal and that's what this new

facility is

> for. "

>

>

[Guest guest]

Hi ,

I just read this thread, have gotten behind, and wanted to let you know that I

too have CFS and Fibro. and take Nuvigil to help me stay alert.  I only take

about 1/8 of a tablet a day, more than that wires me up too much.  I have had

my blood tested for XMRV, last month, but wont find out until 10/5/10 when I see

my doctor.  I see Dr. McMillan near burg PA, I live in Lancaster PA.  He

is mostly a Fibro doc but he is the best that there is in my area and he does

very well.  He also participates in a lot of clinical trials so another reason

for seeing him.  As for the Nuvigil, he says that he has not yet gotten

insurance to pay for it and since it is about $10 a pill, I am still using some

that he gave me a coupon to get for free.  My 10 yo grandson was dx with Autism

last week, which is why I am here.  I am very interested in the protocol,

for me as well.  Lets all move out to Reno with our kids and get the treatment

first hand, hehe.  IF only!!!

Hugs, Michele, nana to twins is and , 4 yo, Zachary, 6 yo, Ethan, 10 yo,

and Tony, 14 yo. Also (in Florida), , 7 yo and new baby due Sept. 8, 2010!

----- " " <thecolemans4@...> wrote:

Hey ,

I tried to email you earlier but I think it didn't go thru... I'll try again.

I thought of something that might be immediately helpful for your son - Provigil

or the newer version, Nuvigil.

It's a narcilepsy drug also used for excessive daytime somnolence, and Dr Klimas

and some other top CFIDS doctors are starting to use it in CFIDS too.  You may

be able to google Dr Klimas and provigil and print something off to ask your

doctor.  I don't know if it's used for your son's age group but I do know a few

docs have tried it in younger kids.

Some people w/CFS are saying it changed their lives.  My husband is very happy

about how it's helping him.  A psychiatrist recently gave it to him because he

has been so flat and unmotivated etc, and he feels brighter and so much more

aware of his environmnt.  He's very excited about it.

Please look into it (read a bit) it's the only thing I can think of that might

have an immediate difference for him.  It would be worth asking about. 

HTH-

________________________________

From: LucyT <lucy1628@...>

Sent: Wed, August 18, 2010 6:52:35 PM

Subject: Re: Read this on the list

 

,

What are you taking for CFS? My son (16 yrs. old) has been fatigued for

6 months...... sleeps 16 to 20 + hrs. Started LDN 2 weeks ago from 1

mg./day for a week and 2 mg./day for the 2nd week. Currently taking 3

mg and will take 4 mg next week. But he still sleeps 17 + hrs. and

waking up tired. He is scheduled to see Dr. G. at the end of Sept. for

the first time and I am wondering how Dr. G will help him immediately

and worried how he is going to handle the school work meanwhile. Any

advise will be appreciated!

Lucy

>

> OOps!

> So when she said they could have a diagnostic test and immune profiles

that show

> people's immune systems going back to normal, would that mean that

they have

> already started treatment on some people (I do know someone over

there has given

> at least one acute patient anti-retrovirals) - have they already

observed an

> immune system returning to normal and now they're going to do enough

study to

> document it?

>

> There are lots of case studies showing often complete remission of

speech

> problems and remission of autistic symptoms in HIV positive kids after

being

> treated with antiretrovirals.

>

> Oh God I'm dying for more information! lol. I want to move to

Reno and get a

> job at WPI so bad I can't stand it.

>

> Hope.

> Hope.

> Hope!

>

>