Re: XMRV in families affected by Autism and other Neuroimmune Diseases

[Guest guest]

Thank you for your thoughtful response.

Sheryl

Sent from my iPhone

On Jan 20, 2011, at 6:21 PM, " Lori " <lbharris@...> wrote:

> Hi Jen,

>

> Dr. G has been drilling into his patient, their siblings and families, to keep

their immune systems cool. The easiest and most effective way is through diet.

Ideally, through gestation and through infancy is the easiest and most effective

time to eliminate any and all foods known to cause allergies, therefore

introducing them at a much later age then standardly recommended.

>

> I know Dr. G saved my second son, who was 17 months when we started with Dr.

Goldberg and already had a chronically green mucousy discharge from his nose,

foul (did I say FOUL!!!!) bowel movements, a bout with pneumonia, born jaundice

and a few other physical symptoms that were indicative of immune issues,

allergies perhaps asthma and most likely somewhere in the ASD spectrum if left

unchecked. Diet alone made a HUGE difference for this guy. By the time I became

pregnant with my third child, I was well aware of what to do in pregnancy and in

her early years and Dr. G walked me through each step, including vaccination

recommendations and schedule. Both younger sibs are fine, really fine, even the

middle guy that I was most concerned about who started off with more immune

triggers then his older ``ASD`` brother, was recently tested by the school, at

age 9, for being gifted. After 3 elimination screens, he came within 2 % of the

98% needed to be in the gifted program here in Ontario. He is very athletic,

plays select hockey and soccer, guitar, is extremely social, knows everyone and

is liked by everyone, is very energetic, sweet, funny – he really is the whole

package, yet I am still careful with his diet and especially cow`s dairy.

However, he is absolutely fine, physically, socially, cognitively - healthy,

healthy, healthy. I strongly feel that as long as his diet is free of immune

triggers that will cause inflammatory reactions, he will be way ahead of his

peers in terms of long term health. My youngest has absolutely no allergies and

while she can eat anything, I still don`t allow her the things that I know can

and will stress her immune system. Certain things will just NEVER be part of our

diet and I believe that will give my kids the edge in terms of their long term

health, regardless of what underlying viruses may be within their makeup, or

they have been exposed to from me, their environment or anywhere else.

>

> Don`t stress yourself or spend valuable energy worrying whether you passed a

virus along to your children through nursing them, or even growing them or

birthing them. This happens to adopted children too. Breast feeding is the

healthiest way to feed your baby and the alternative of formula is filled with

so much garbage like processed bovine dairy, corn derivatives and a host of

other unpronounceable things that would not have done your babies any better.

>

> Without guilt, or paranoia, we must also realize that a great part of the

population is or will be ill. Not just from xmrv, or any other virus or retro

virus that may or may not turn up, but because the world is changing and this

world has become so quick and dirty that there are no simple answers. Debates

on food and air quality, chemicals, processing, electromagnetic fields with cell

phones and wireless devices, and so on…nothing is simple and there are no easy

answers. We just learn, evolve and continue to make the best choices for our

children. We can`t freak out at the possibilities. If it were as simple as the

worst case scenario, I really believe there would be far more ill children and

adults. Kids are recovering. However, it is a life`s work to keep any child

healthy in this world today. Yet without over simplifying, I think a lot of the

solution is still diet, diet, diet. Garbage in, garbage out. It is tough. Folks

complain. But it works at keeping the immune system cool and letting the body

function it`s best. While it is obviously not the whole answer, it is the best

start and the best maintenance, for any child, any adult.

>

> Again, just my two, or three cents.

>

> Lori

>

> _____

>

> From: [mailto: ] On Behalf Of

> Sent: January-20-11 3:24 PM

>

> Subject: Re: XMRV in families affected by Autism and other Neuroimmune

Diseases

>

> Lori, I have 2 NT kids besides, and they developed food allergies too! So now

the whole family is on a GF/CF diet along with any other triggers we have

figured out along the way (like nuts, egg yolks) cause problems for us too. Its

very possible that the whole family is affected and we need to do everything we

can to keep inflammation under control until we figure out who is or isnt

affected by this retrovirus. I wonder if I passed on what I have to my kids

since I nursed them...

>

> -Jen

>

>

> >

> > > And its these types of retroviruses that we think trigger the immune

system’s

> > >inability to properly control the other viruses that NIDs treats †"

like HHV 6,

> > >CMV, EBV etc. And I pose the question…. Is the system is firing off

producing

> > >antibodies to these viruses †" which react to the typical tests, but in

fact it

> > >is trying to fight off something else †" like a retrovirus?

> > >

> > > My son has constantly high IgG titres to EBV and CMV, but negative IGM

titres

> > >for the last 12 years. An exhaustive study at UCLA by the Professor

,

> > >head of pediatric immunology (at Dr G’s recommendation) on my

son’s EBC could

> > >not, via PCR find any evidence of an EBV infection!

> > >

> > >

> > > This is what we are talking about

> > >

> > >

> > >

> > > _____

> > >

> > > From: <mailto:%40>

<mailto:%40> [mailto:

<mailto:%40> <mailto:%40> ] On Behalf Of

> > > Sent: Wednesday, January 19, 2011 12:02 PM

> > > <mailto:%40>

<mailto:%40>

> > > Subject: Re: XMRV in families affected by Autism and other

Neuroimmune

> > >Diseases

> > >

> > > I am not sure what you are getting at but XMRV is a retrovirus...another

> > >retrovirus you may have heard of before? HIV. XMRV is a most likely a very

> > >serious pathogen, maybe even the root cause of immune dysfunction in

autism, CFS

> > >and more. This retrovirus has been found in the most aggressive forms of

> > >prostate cancer, and in breast cancer. This is probably one of the biggest

> > >discoveries related to autism yet.

> > >

> > > --- In <mailto:%40>

<mailto:%40> <mailto:%40> , erikadyan71@

> > >wrote:

> > > >

> > > > Now what......?!

> > > >

> > > > I am not trying to stir the pot.....it is just that we ALL have viruses

in

> > >our body. Correct me if I am wrong, but we don't even have cures for the

current

> > >viruses " treats " .....

> > > >

> > > > Just thinking out loud!!

> > > >

> > > >

> > > > .

> > > > Sent on the Sprint® Now Network from my BlackBerry®

> > > >

> > > > XMRV in families affected by Autism and other

Neuroimmune

> > >Diseases

> > > >

> > > > I have attached a photo of the poster from Dr. Mikovits' presentation

this

> > >past week. Entire families were tested for the XMRV retrovirus

and antibodies,

> > >and the evidence shows that almost the whole family is affected.Â

This is an

> > >infectious disease that should be addressed and deserves much attention!

> > > > Â

> > > > Here is an explanation for the poster:

> > > > Â In each of the 6 clusters, the top 2 are the parents with the

children

> > >underneath them. LIGHT BLUE = FIBROMYALGIA, DARK BLUE = CFS, GREEN =

AUTISM.

> > >Under each shape is their XMRV result. V= virus found in culture, Av =

antibody

> > >test, NT=not tested

> > >

> > > >

> > > > Family 1, upper left corner †" One parent XMRV + for virus by

culture and

> > >XMRV + for antibody, one parent XMRV + for the antibody. Neither parent

> > >symptomatic. Child with Autism, XMRV + for the virus.

> > >

> > > >

> > > > Family 2, top row, middle †" One parent with CFS and XMRV+ for

antibody. Two

> > >children with Autism; one XMRV+ for virus by culture, one XMRV+ by

antibody.

> > >

> > > >

> > > > Family 3, upper right corner †" One parent with CFS and XMRV+

for virus by

> > >culture. Child with Autism, XMRV+ for virus by culture.

> > >

> > > >

> > > > Family 4, bottom left corner †" One parent with CFS and XMRV +

for virus by

> > >culture. Two children with Autism, both XMRV+ for virus by culture.

> > >

> > > >

> > > > Family 5, bottom row, middle †" One parent with CFS,

Fibromyalgia and XMRV+

> > >by antivody. Child with Autism, XMRV+ for virus by culture and by antibody.

> > >

> > > >

> > > > Family 6, bottom right corner †" One parent with CFS and XMRV+

by antibody.

> > >Child with Autism, not tested for XMRV.

> > >

> > > >

> > > > A quick summary provided by Dr. Mikovits regarding families. She can

confirm,

> > >there is XMRV in children under the age of 5. To date they have confirmed

XMRV

> > >in 16 of 17 families with neuroimmune disease amongst multiple members.

Finally,

> > >that more work needs to be done to confirm pathogenesis and transmission

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Has anybody looked at research regarding the antibiotic Minocycline? I found a

study being done on regressive " A " but couldn't find the results anywhere. If

somebody is able to read the results or other studies about this I am

interested.

This is a study about its affects on patients with AIDS

http://www.ncbi.nlm.nih.gov/pubmed/20479889

Amber

________________________________

From: <jlhank80@...>

Sent: Wed, January 19, 2011 8:44:08 PM

Subject: Re: XMRV in families affected by Autism and other Neuroimmune

Diseases

Thats a really good question, . I have no idea if the antibodies to EBV

are cross-reactive to XMRV. Here is some information about EBV and how it

relates to XMRV:

http://cfidsresearch.blogspot.com/2010/12/ebv-and-xmrv-new-disease-model.html

-Jen

>

> And its these types of retroviruses that we think trigger the immune

system’s

>inability to properly control the other viruses that NIDs treats †" like

HHV 6,

>CMV, EBV etc. And I pose the question…. Is the system is firing off

producing

>antibodies to these viruses †" which react to the typical tests, but in

fact it

>is trying to fight off something else †" like a retrovirus?

>

> My son has constantly high IgG titres to EBV and CMV, but negative IGM titres

>for the last 12 years. An exhaustive study at UCLA by the Professor ,

>head of pediatric immunology (at Dr G’s recommendation) on my

son’s EBC

>could not, via PCR find any evidence of an EBV infection!

>

>

>

>

> This is what we are talking about

>

>

>

>

>

>

>

>

>

> _____

>

> From: [mailto: ] On Behalf Of

> Sent: Wednesday, January 19, 2011 12:02 PM

>

> Subject: Re: XMRV in families affected by Autism and other Neuroimmune

>Diseases

>

>

>

>

>

> I am not sure what you are getting at but XMRV is a retrovirus...another

>retrovirus you may have heard of before? HIV. XMRV is a most likely a very

>serious pathogen, maybe even the root cause of immune dysfunction in autism,

CFS

>and more. This retrovirus has been found in the most aggressive forms of

>prostate cancer, and in breast cancer. This is probably one of the biggest

>discoveries related to autism yet.

>

> --- In <mailto:%40> , erikadyan71@

>wrote:

> >

> > Now what......?!

> >

> > I am not trying to stir the pot.....it is just that we ALL have viruses in

>our body. Correct me if I am wrong, but we don't even have cures for the

current

>viruses " treats " .....

> >

> > Just thinking out loud!!

> >

> >

> > .

> > Sent on the Sprint® Now Network from my BlackBerry®

> >

> > XMRV in families affected by Autism and other Neuroimmune

>Diseases

> >

> > I have attached a photo of the poster from Dr. Mikovits' presentation this

>past week. Entire families were tested for the XMRV retrovirus and

>antibodies, and the evidence shows that almost the whole family is

affected.Â

>This is an infectious disease that should be addressed and deserves much

>attention!

> > Â

> > Here is an explanation for the poster:

> > Â In each of the 6 clusters, the top 2 are the parents with the children

>underneath them. LIGHT BLUE = FIBROMYALGIA, DARK BLUE = CFS, GREEN = AUTISM.

>Under each shape is their XMRV result. V= virus found in culture, Av = antibody

>test, NT=not tested

>

> >

> > Family 1, upper left corner †" One parent XMRV + for virus by

culture and

>XMRV + for antibody, one parent XMRV + for the antibody. Neither parent

>symptomatic. Child with Autism, XMRV + for the virus.

>

> >

> > Family 2, top row, middle †" One parent with CFS and XMRV+ for

antibody.

>Two children with Autism; one XMRV+ for virus by culture, one XMRV+ by

antibody.

>

> >

> > Family 3, upper right corner †" One parent with CFS and XMRV+ for

virus

>by culture. Child with Autism, XMRV+ for virus by culture.

>

> >

> > Family 4, bottom left corner †" One parent with CFS and XMRV + for

virus

>by culture. Two children with Autism, both XMRV+ for virus by culture.

>

> >

> > Family 5, bottom row, middle †" One parent with CFS, Fibromyalgia

and

>XMRV+ by antivody. Child with Autism, XMRV+ for virus by culture and by

>antibody.

>

> >

> > Family 6, bottom right corner †" One parent with CFS and XMRV+ by

>antibody. Child with Autism, not tested for XMRV.

>

> >

> > A quick summary provided by Dr. Mikovits regarding families. She can

confirm,

>there is XMRV in children under the age of 5. To date they have confirmed XMRV

>in 16 of 17 families with neuroimmune disease amongst multiple members.

Finally,

>that more work needs to be done to confirm pathogenesis and transmission

> >

> >

> >

> >

> >

[Guest guest]

Hopefully this year There are some ideas but what Dr. G and Dr. are

doing is a most likely very effective way to help this illness to stop in it's

course and go into remission.

> >

> > I have attached a photo of the poster from Dr. Mikovits' presentation this

past week.  Entire families were tested for the XMRV retrovirus and

antibodies, and the evidence shows that almost the whole family is affected. 

This is an infectious disease that should be addressed and deserves much

attention!

> >  

> > Here is an explanation for the poster:

> >  In each of the 6 clusters, the top 2 are the parents with the children

underneath them. LIGHT BLUE = FIBROMYALGIA, DARK BLUE = CFS, GREEN = AUTISM.

Under each shape is their XMRV result. V= virus found in culture, Av = antibody

test, NT=not tested

> >

> > Family 1, upper left corner †" One parent XMRV + for virus by culture and

XMRV + for antibody, one parent XMRV + for the antibody. Neither parent

symptomatic. Child with Autism, XMRV + for the virus.

> >

> > Family 2, top row, middle †" One parent with CFS and XMRV+ for antibody.

Two children with Autism; one XMRV+ for virus by culture, one XMRV+ by antibody.

> >

> > Family 3, upper right corner †" One parent with CFS and XMRV+ for virus by

culture. Child with Autism, XMRV+ for virus by culture.

> >

> > Family 4, bottom left corner †" One parent with CFS and XMRV + for virus by

culture. Two children with Autism, both XMRV+ for virus by culture.

> >

> > Family 5, bottom row, middle †" One parent with CFS, Fibromyalgia and XMRV+

by antivody. Child with Autism, XMRV+ for virus by culture and by antibody.

> >

> > Family 6, bottom right corner †" One parent with CFS and XMRV+ by antibody.

Child with Autism, not tested for XMRV.

> >

> > A quick summary provided by Dr. Mikovits regarding families. She can

confirm, there is XMRV in children under the age of 5. To date they have

confirmed XMRV in 16 of 17 families with neuroimmune disease amongst multiple

members. Finally, that more work needs to be done to confirm pathogenesis and

transmission

> >

> >

> >

> >

> >

[Guest guest]

We tried minocycline for about 6 months.....No positives or negatives so we

stopped. Our DAN doc said it's good for strep, lyme and inflamation.

 

From: Amber Schneider <momo3@...>

Subject: Re: Re: XMRV in families affected by Autism and other

Neuroimmune Diseases

Date: Thursday, January 20, 2011, 10:03 PM

 

Has anybody looked at research regarding the antibiotic Minocycline? I found a

study being done on regressive " A " but couldn't find the results anywhere. If

somebody is able to read the results or other studies about this I am

interested.

This is a study about its affects on patients with AIDS

http://www.ncbi.nlm.nih.gov/pubmed/20479889

Amber

________________________________

From: <jlhank80@...>

Sent: Wed, January 19, 2011 8:44:08 PM

Subject: Re: XMRV in families affected by Autism and other Neuroimmune

Diseases

Thats a really good question, . I have no idea if the antibodies to EBV

are cross-reactive to XMRV. Here is some information about EBV and how it

relates to XMRV:

http://cfidsresearch.blogspot.com/2010/12/ebv-and-xmrv-new-disease-model.html

-Jen

>

> And its these types of retroviruses that we think trigger the immune

system’s

>inability to properly control the other viruses that NIDs treats †" like

HHV 6,

>CMV, EBV etc. And I pose the question…. Is the system is firing off

producing

>antibodies to these viruses †" which react to the typical tests, but in

fact it

>is trying to fight off something else †" like a retrovirus?

>

> My son has constantly high IgG titres to EBV and CMV, but negative IGM titres

>for the last 12 years. An exhaustive study at UCLA by the Professor ,

>head of pediatric immunology (at Dr G’s recommendation) on my

son’s EBC

>could not, via PCR find any evidence of an EBV infection!

>

>

>

>

> This is what we are talking about

>

>

>

>

>

>

>

>

>

> _____

>

> From: [mailto: ] On Behalf Of

> Sent: Wednesday, January 19, 2011 12:02 PM

>

> Subject: Re: XMRV in families affected by Autism and other Neuroimmune

>Diseases

>

>

>

>

>

> I am not sure what you are getting at but XMRV is a retrovirus...another

>retrovirus you may have heard of before? HIV. XMRV is a most likely a very

>serious pathogen, maybe even the root cause of immune dysfunction in autism,

CFS

>and more. This retrovirus has been found in the most aggressive forms of

>prostate cancer, and in breast cancer. This is probably one of the biggest

>discoveries related to autism yet.

>

> --- In <mailto:%40> , erikadyan71@

>wrote:

> >

> > Now what......?!

> >

> > I am not trying to stir the pot.....it is just that we ALL have viruses in

>our body. Correct me if I am wrong, but we don't even have cures for the

current

>viruses " treats " .....

> >

> > Just thinking out loud!!

> >

> >

> > .

> > Sent on the Sprint® Now Network from my BlackBerry®

> >

> > XMRV in families affected by Autism and other Neuroimmune

>Diseases

> >

> > I have attached a photo of the poster from Dr. Mikovits' presentation this

>past week. Entire families were tested for the XMRV retrovirus and

>antibodies, and the evidence shows that almost the whole family is

affected.Â

>This is an infectious disease that should be addressed and deserves much

>attention!

> > Â

> > Here is an explanation for the poster:

> > Â In each of the 6 clusters, the top 2 are the parents with the children

>underneath them. LIGHT BLUE = FIBROMYALGIA, DARK BLUE = CFS, GREEN = AUTISM.

>Under each shape is their XMRV result. V= virus found in culture, Av = antibody

>test, NT=not tested

>

> >

> > Family 1, upper left corner †" One parent XMRV + for virus by

culture and

>XMRV + for antibody, one parent XMRV + for the antibody. Neither parent

>symptomatic. Child with Autism, XMRV + for the virus.

>

> >

> > Family 2, top row, middle †" One parent with CFS and XMRV+ for

antibody.

>Two children with Autism; one XMRV+ for virus by culture, one XMRV+ by

antibody.

>

> >

> > Family 3, upper right corner †" One parent with CFS and XMRV+ for

virus

>by culture. Child with Autism, XMRV+ for virus by culture.

>

> >

> > Family 4, bottom left corner †" One parent with CFS and XMRV + for

virus

>by culture. Two children with Autism, both XMRV+ for virus by culture.

>

> >

> > Family 5, bottom row, middle †" One parent with CFS, Fibromyalgia

and

>XMRV+ by antivody. Child with Autism, XMRV+ for virus by culture and by

>antibody.

>

> >

> > Family 6, bottom right corner †" One parent with CFS and XMRV+ by

>antibody. Child with Autism, not tested for XMRV.

>

> >

> > A quick summary provided by Dr. Mikovits regarding families. She can

confirm,

>there is XMRV in children under the age of 5. To date they have confirmed XMRV

>in 16 of 17 families with neuroimmune disease amongst multiple members.

Finally,

>that more work needs to be done to confirm pathogenesis and transmission

> >

> >

> >

> >

> >

[Guest guest]

We tried minocycline as well, for regressive autism. Hard to tell if it helped

at all because we had more GI issues on it. Our doc said it helps with about 35%

of strep/PANDAS patients. -Crystal

> >

> > And its these types of retroviruses that we think trigger the immune

system’s

> >inability to properly control the other viruses that NIDs treats †" like

HHV 6,

> >CMV, EBV etc. And I pose the question…. Is the system is firing off

producing

> >antibodies to these viruses †" which react to the typical tests, but in

fact it

> >is trying to fight off something else †" like a retrovirus?

> >

> > My son has constantly high IgG titres to EBV and CMV, but negative IGM

titres

> >for the last 12 years. An exhaustive study at UCLA by the Professor ,

> >head of pediatric immunology (at Dr G’s recommendation) on my

son’s EBC

> >could not, via PCR find any evidence of an EBV infection!

> >

> >

> >

> >

> > This is what we are talking about

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > _____

> >

> > From: [mailto: ] On Behalf Of

> > Sent: Wednesday, January 19, 2011 12:02 PM

> >

> > Subject: Re: XMRV in families affected by Autism and other

Neuroimmune

> >Diseases

> >

> >

> >

> >

> >

> > I am not sure what you are getting at but XMRV is a retrovirus...another

> >retrovirus you may have heard of before? HIV. XMRV is a most likely a very

> >serious pathogen, maybe even the root cause of immune dysfunction in autism,

CFS

> >and more. This retrovirus has been found in the most aggressive forms of

> >prostate cancer, and in breast cancer. This is probably one of the biggest

> >discoveries related to autism yet.

> >

> > --- In <mailto:%40> , erikadyan71@

> >wrote:

> > >

> > > Now what......?!

> > >

> > > I am not trying to stir the pot.....it is just that we ALL have viruses in

> >our body. Correct me if I am wrong, but we don't even have cures for the

current

> >viruses " treats " .....

> > >

> > > Just thinking out loud!!

> > >

> > >

> > > .

> > > Sent on the Sprint® Now Network from my BlackBerry®

> > >

> > > XMRV in families affected by Autism and other Neuroimmune

> >Diseases

> > >

> > > I have attached a photo of the poster from Dr. Mikovits' presentation this

> >past week. Entire families were tested for the XMRV retrovirus and

> >antibodies, and the evidence shows that almost the whole family is

affected.Â

> >This is an infectious disease that should be addressed and deserves much

> >attention!

> > > Â

> > > Here is an explanation for the poster:

> > > Â In each of the 6 clusters, the top 2 are the parents with the

children

> >underneath them. LIGHT BLUE = FIBROMYALGIA, DARK BLUE = CFS, GREEN = AUTISM.

> >Under each shape is their XMRV result. V= virus found in culture, Av =

antibody

> >test, NT=not tested

> >

> > >

> > > Family 1, upper left corner †" One parent XMRV + for virus by

culture and

> >XMRV + for antibody, one parent XMRV + for the antibody. Neither parent

> >symptomatic. Child with Autism, XMRV + for the virus.

> >

> > >

> > > Family 2, top row, middle †" One parent with CFS and XMRV+ for

antibody.

> >Two children with Autism; one XMRV+ for virus by culture, one XMRV+ by

antibody.

> >

> > >

> > > Family 3, upper right corner †" One parent with CFS and XMRV+

for virus

> >by culture. Child with Autism, XMRV+ for virus by culture.

> >

> > >

> > > Family 4, bottom left corner †" One parent with CFS and XMRV +

for virus

> >by culture. Two children with Autism, both XMRV+ for virus by culture.

> >

> > >

> > > Family 5, bottom row, middle †" One parent with CFS,

Fibromyalgia and

> >XMRV+ by antivody. Child with Autism, XMRV+ for virus by culture and by

> >antibody.

> >

> > >

> > > Family 6, bottom right corner †" One parent with CFS and XMRV+

by

> >antibody. Child with Autism, not tested for XMRV.

> >

> > >

> > > A quick summary provided by Dr. Mikovits regarding families. She can

confirm,

> >there is XMRV in children under the age of 5. To date they have confirmed

XMRV

> >in 16 of 17 families with neuroimmune disease amongst multiple members.

Finally,

> >that more work needs to be done to confirm pathogenesis and transmission

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Thanks for that link … I found this statement from the comments to be

of interest..

“WPI found that ME/CFS patients have 20-30 other viruses on average, in

addition to XMRV/MuLVs, while the controls had 2-3 other viruses, if my memory

serves, which it may not on the exact numbers. Other research has found that in

some cases, these viruses " hybridize " - exchange genetic information - with each

other and sometimes with other microbes such as bacteria.â€

_____

From: [mailto: ] On Behalf Of

Sent: Wednesday, January 19, 2011 8:44 PM

Subject: Re: XMRV in families affected by Autism and other Neuroimmune

Diseases

Thats a really good question, . I have no idea if the antibodies to EBV

are cross-reactive to XMRV. Here is some information about EBV and how it

relates to XMRV:

http://cfidsresearch.blogspot.com/2010/12/ebv-and-xmrv-new-disease-model.html

-Jen

> >

> > Now what......?!

> >

> > I am not trying to stir the pot.....it is just that we ALL have viruses in

our body. Correct me if I am wrong, but we don't even have cures for the current

viruses " treats " .....

> >

> > Just thinking out loud!!

> >

> >

> > .

> > Sent on the Sprint® Now Network from my BlackBerry®

> >

> > XMRV in families affected by Autism and other Neuroimmune

Diseases

> >

> > I have attached a photo of the poster from Dr. Mikovits' presentation this

past week. Entire families were tested for the XMRV retrovirus and

antibodies, and the evidence shows that almost the whole family is

affected. This is an infectious disease that should be addressed and

deserves much attention!

> > Â

> > Here is an explanation for the poster:

> > Â In each of the 6 clusters, the top 2 are the parents with the children

underneath them. LIGHT BLUE = FIBROMYALGIA, DARK BLUE = CFS, GREEN = AUTISM.

Under each shape is their XMRV result. V= virus found in culture, Av = antibody

test, NT=not tested

> >

> > Family 1, upper left corner †" One parent XMRV + for virus by

culture and XMRV + for antibody, one parent XMRV + for the antibody. Neither

parent symptomatic. Child with Autism, XMRV + for the virus.

> >

> > Family 2, top row, middle †" One parent with CFS and XMRV+ for

antibody. Two children with Autism; one XMRV+ for virus by culture, one XMRV+ by

antibody.

> >

> > Family 3, upper right corner †" One parent with CFS and XMRV+ for

virus by culture. Child with Autism, XMRV+ for virus by culture.

> >

> > Family 4, bottom left corner †" One parent with CFS and XMRV + for

virus by culture. Two children with Autism, both XMRV+ for virus by culture.

> >

> > Family 5, bottom row, middle †" One parent with CFS, Fibromyalgia

and XMRV+ by antivody. Child with Autism, XMRV+ for virus by culture and by

antibody.

> >

> > Family 6, bottom right corner †" One parent with CFS and XMRV+ by

antibody. Child with Autism, not tested for XMRV.

> >

> > A quick summary provided by Dr. Mikovits regarding families. She can

confirm, there is XMRV in children under the age of 5. To date they have

confirmed XMRV in 16 of 17 families with neuroimmune disease amongst multiple

members. Finally, that more work needs to be done to confirm pathogenesis and

transmission

> >

> >

> >

> >

> >

[Guest guest]

Has anyone on this site had their child tested for Bartonellosis?

From: crosswilsons@...

Date: Tue, 25 Jan 2011 13:50:46 -0800

Subject: RE: Re: XMRV in families affected by Autism and other

Neuroimmune Diseases

Thanks for that link … I found this statement from the comments to be of

interest..

“WPI found that ME/CFS patients have 20-30 other viruses on average, in addition

to XMRV/MuLVs, while the controls had 2-3 other viruses, if my memory serves,

which it may not on the exact numbers. Other research has found that in some

cases, these viruses " hybridize " - exchange genetic information - with each

other and sometimes with other microbes such as bacteria.”

_____

From: [mailto: ] On Behalf Of

Sent: Wednesday, January 19, 2011 8:44 PM

Subject: Re: XMRV in families affected by Autism and other Neuroimmune

Diseases

Thats a really good question, . I have no idea if the antibodies to EBV

are cross-reactive to XMRV. Here is some information about EBV and how it

relates to XMRV:

http://cfidsresearch.blogspot.com/2010/12/ebv-and-xmrv-new-disease-model.html

-Jen

> >

> > Now what......?!

> >

> > I am not trying to stir the pot.....it is just that we ALL have viruses in

our body. Correct me if I am wrong, but we don't even have cures for the current

viruses " treats " .....

> >

> > Just thinking out loud!!

> >

> >

> > .

> > Sent on the Sprint® Now Network from my BlackBerry®

> >

> > XMRV in families affected by Autism and other Neuroimmune

Diseases

> >

> > I have attached a photo of the poster from Dr. Mikovits' presentation this

past week. Entire families were tested for the XMRV retrovirus and

antibodies, and the evidence shows that almost the whole family is affected.Â

This is an infectious disease that should be addressed and deserves much

attention!

> > Â

> > Here is an explanation for the poster:

> > Â In each of the 6 clusters, the top 2 are the parents with the children

underneath them. LIGHT BLUE = FIBROMYALGIA, DARK BLUE = CFS, GREEN = AUTISM.

Under each shape is their XMRV result. V= virus found in culture, Av = antibody

test, NT=not tested

> >

> > Family 1, upper left corner †" One parent XMRV + for virus by culture

and XMRV + for antibody, one parent XMRV + for the antibody. Neither parent

symptomatic. Child with Autism, XMRV + for the virus.

> >

> > Family 2, top row, middle †" One parent with CFS and XMRV+ for antibody.

Two children with Autism; one XMRV+ for virus by culture, one XMRV+ by antibody.

> >

> > Family 3, upper right corner †" One parent with CFS and XMRV+ for virus

by culture. Child with Autism, XMRV+ for virus by culture.

> >

> > Family 4, bottom left corner †" One parent with CFS and XMRV + for virus

by culture. Two children with Autism, both XMRV+ for virus by culture.

> >

> > Family 5, bottom row, middle †" One parent with CFS, Fibromyalgia and

XMRV+ by antivody. Child with Autism, XMRV+ for virus by culture and by

antibody.

> >

> > Family 6, bottom right corner †" One parent with CFS and XMRV+ by

antibody. Child with Autism, not tested for XMRV.

> >

> > A quick summary provided by Dr. Mikovits regarding families. She can

confirm, there is XMRV in children under the age of 5. To date they have

confirmed XMRV in 16 of 17 families with neuroimmune disease amongst multiple

members. Finally, that more work needs to be done to confirm pathogenesis and

transmission

> >

> >

> >

> >

> >

[Guest guest]

Is that Bartonella? If yes, my doc. used Fry Labs. . My doc. looked

at the photos of the cells,and his symptoms to diagnose my son with

bartonella. Tammy F.

> Has anyone on this site had their child tested for Bartonellosis?

>

>

>

>

>

>

> From: crosswilsons@...

> Date: Tue, 25 Jan 2011 13:50:46 -0800

> Subject: RE: Re: XMRV in families affected by Autism and other

Neuroimmune Diseases

>

>

>

>

>

>

> Thanks for that link ... I found this statement from the comments to

be of interest..

>

> " WPI found that ME/CFS patients have 20-30 other viruses on average, in

addition to XMRV/MuLVs, while the controls had 2-3 other viruses, if my memory

serves, which it may not on the exact numbers. Other research has found that in

some cases, these viruses " hybridize " - exchange genetic information - with each

other and sometimes with other microbes such as bacteria. "

>

>

>

> _____

>

> From: [mailto: ] On Behalf Of

> Sent: Wednesday, January 19, 2011 8:44 PM

>

> Subject: Re: XMRV in families affected by Autism and other Neuroimmune

Diseases

>

> Thats a really good question, . I have no idea if the antibodies to EBV

are cross-reactive to XMRV. Here is some information about EBV and how it

relates to XMRV:

>

> http://cfidsresearch.blogspot.com/2010/12/ebv-and-xmrv-new-disease-model.html

>

> -Jen

>

>

>>> Now what......?!

>>>

>>> I am not trying to stir the pot.....it is just that we ALL have viruses in

our body. Correct me if I am wrong, but we don't even have cures for the current

viruses " treats " .....

>>>

>>> Just thinking out loud!!

>>>

>>>

>>> .

>>> Sent on the SprintÃ,® Now Network from my BlackBerryÃ,®

>>>

>>> XMRV in families affected by Autism and other Neuroimmune

Diseases

>>>

>>> I have attached a photo of the poster from Dr. Mikovits' presentation this

past week.Ã, Entire families were tested for the XMRVÃ, retrovirus and

antibodies, and the evidence shows thatÃ, almost the whole family is affected.Ã,

This is an infectious disease that should be addressed and deserves much

attention!

>>> Ã,

>>> Here is an explanation for the poster:

>>> Ã, In each of the 6 clusters, the top 2 are the parents with the children

underneath them. LIGHT BLUE = FIBROMYALGIA, DARK BLUE = CFS, GREEN = AUTISM.

Under each shape is their XMRV result. V= virus found in culture, Av = antibody

test, NT=not tested

>>>

>>> Family 1, upper left corner ââ,¬ " One parent XMRV + for virus by culture

and XMRV + for antibody, one parent XMRV + for the antibody. Neither parent

symptomatic. Child with Autism, XMRV + for the virus.

>>>

>>> Family 2, top row, middle ââ,¬ " One parent with CFS and XMRV+ for antibody.

Two children with Autism; one XMRV+ for virus by culture, one XMRV+ by antibody.

>>>

>>> Family 3, upper right corner ââ,¬ " One parent with CFS and XMRV+ for virus

by culture. Child with Autism, XMRV+ for virus by culture.

>>>

>>> Family 4, bottom left corner ââ,¬ " One parent with CFS and XMRV + for virus

by culture. Two children with Autism, both XMRV+ for virus by culture.

>>>

>>> Family 5, bottom row, middle ââ,¬ " One parent with CFS, Fibromyalgia and

XMRV+ by antivody. Child with Autism, XMRV+ for virus by culture and by

antibody.

>>>

>>> Family 6, bottom right corner ââ,¬ " One parent with CFS and XMRV+ by

antibody. Child with Autism, not tested for XMRV.

>>>

>>> A quick summary provided by Dr. Mikovits regarding families. She can

confirm, there is XMRV in children under the age of 5. To date they have

confirmed XMRV in 16 of 17 families with neuroimmune disease amongst multiple

members. Finally, that more work needs to be done to confirm pathogenesis and

transmission

>>>

>>>

>>>

>>>

>>>

[Guest guest]

Yes. My son, husband and self all have bartonella. We also have borrelia,

babesia and strep.

One of my LLMDs feels that bartonella is the root cause of all immune

disfunction, it reduces normal immune response. I am still unsure if the

causative is bartonella, viruses or even worms, but I do believe the cause is

infectious versus immune as the stem cause, however, I am open to treating any

and all infections.

Caryn

>

>

> Has anyone on this site had their child tested for Bartonellosis?

>

>

>

>

>

[Guest guest]

Hi Tammy,

Thanks! Was your son treated with antibiotics, if so, was he treated for a full

six months?

From: stoplyme@...

Date: Wed, 26 Jan 2011 20:59:13 -0600

Subject: Re: Re: XMRV in families affected by Autism and other

Neuroimmune Diseases

Is that Bartonella? If yes, my doc. used Fry Labs. . My doc. looked

at the photos of the cells,and his symptoms to diagnose my son with

bartonella. Tammy F.

> Has anyone on this site had their child tested for Bartonellosis?

>

>

>

>

>

>

> From: crosswilsons@...

> Date: Tue, 25 Jan 2011 13:50:46 -0800

> Subject: RE: Re: XMRV in families affected by Autism and other

Neuroimmune Diseases

>

>

>

>

>

>

> Thanks for that link ... I found this statement from the comments to

be of interest..

>

> " WPI found that ME/CFS patients have 20-30 other viruses on average, in

addition to XMRV/MuLVs, while the controls had 2-3 other viruses, if my memory

serves, which it may not on the exact numbers. Other research has found that in

some cases, these viruses " hybridize " - exchange genetic information - with each

other and sometimes with other microbes such as bacteria. "

>

>

>

> _____

>

> From: [mailto: ] On Behalf Of

> Sent: Wednesday, January 19, 2011 8:44 PM

>

> Subject: Re: XMRV in families affected by Autism and other Neuroimmune

Diseases

>

> Thats a really good question, . I have no idea if the antibodies to EBV

are cross-reactive to XMRV. Here is some information about EBV and how it

relates to XMRV:

>

> http://cfidsresearch.blogspot.com/2010/12/ebv-and-xmrv-new-disease-model.html

>

> -Jen

>

>

>>> Now what......?!

>>>

>>> I am not trying to stir the pot.....it is just that we ALL have viruses in

our body. Correct me if I am wrong, but we don't even have cures for the current

viruses " treats " .....

>>>

>>> Just thinking out loud!!

>>>

>>>

>>> .

>>> Sent on the SprintÃ,® Now Network from my BlackBerryÃ,®

>>>

>>> XMRV in families affected by Autism and other Neuroimmune

Diseases

>>>

>>> I have attached a photo of the poster from Dr. Mikovits' presentation this

past week.Ã, Entire families were tested for the XMRVÃ, retrovirus and

antibodies, and the evidence shows thatÃ, almost the whole family is affected.Ã,

This is an infectious disease that should be addressed and deserves much

attention!

>>> Ã,

>>> Here is an explanation for the poster:

>>> Ã, In each of the 6 clusters, the top 2 are the parents with the children

underneath them. LIGHT BLUE = FIBROMYALGIA, DARK BLUE = CFS, GREEN = AUTISM.

Under each shape is their XMRV result. V= virus found in culture, Av = antibody

test, NT=not tested

>>>

>>> Family 1, upper left corner ââ,¬ " One parent XMRV + for virus by culture

and XMRV + for antibody, one parent XMRV + for the antibody. Neither parent

symptomatic. Child with Autism, XMRV + for the virus.

>>>

>>> Family 2, top row, middle ââ,¬ " One parent with CFS and XMRV+ for antibody.

Two children with Autism; one XMRV+ for virus by culture, one XMRV+ by antibody.

>>>

>>> Family 3, upper right corner ââ,¬ " One parent with CFS and XMRV+ for virus

by culture. Child with Autism, XMRV+ for virus by culture.

>>>

>>> Family 4, bottom left corner ââ,¬ " One parent with CFS and XMRV + for virus

by culture. Two children with Autism, both XMRV+ for virus by culture.

>>>

>>> Family 5, bottom row, middle ââ,¬ " One parent with CFS, Fibromyalgia and

XMRV+ by antivody. Child with Autism, XMRV+ for virus by culture and by

antibody.

>>>

>>> Family 6, bottom right corner ââ,¬ " One parent with CFS and XMRV+ by

antibody. Child with Autism, not tested for XMRV.

>>>

>>> A quick summary provided by Dr. Mikovits regarding families. She can

confirm, there is XMRV in children under the age of 5. To date they have

confirmed XMRV in 16 of 17 families with neuroimmune disease amongst multiple

members. Finally, that more work needs to be done to confirm pathogenesis and

transmission

>>>

>>>

>>>

>>>

>>>

[Guest guest]

Hi .He has done 2 and a half years of antibiotics. 4 types to knock

it down good.It worked for my Lyme but just continued to make my son

sicker and sicker, He was on mycobutin,azithro.,bicillin,there was

another one on and off,I just can't think of it right now.

Thanks,Tammy F.

> Hi Tammy,

>

> Thanks! Was your son treated with antibiotics, if so, was he treated for a

full six months?

>

>

>

> From: stoplyme@...

> Date: Wed, 26 Jan 2011 20:59:13 -0600

> Subject: Re: Re: XMRV in families affected by Autism and other

Neuroimmune Diseases

>

>

>

>

>

>

> Is that Bartonella? If yes, my doc. used Fry Labs. . My doc. looked

> at the photos of the cells,and his symptoms to diagnose my son with

> bartonella. Tammy F.

>> Has anyone on this site had their child tested for Bartonellosis?

>>

>>

>>

>>

>>

>>

>> From: crosswilsons@...

>> Date: Tue, 25 Jan 2011 13:50:46 -0800

>> Subject: RE: Re: XMRV in families affected by Autism and other

Neuroimmune Diseases

>>

>>

>>

>>

>>

>>

>> Thanks for that link ... I found this statement from the comments to

be of interest..

>>

>> " WPI found that ME/CFS patients have 20-30 other viruses on average, in

addition to XMRV/MuLVs, while the controls had 2-3 other viruses, if my memory

serves, which it may not on the exact numbers. Other research has found that in

some cases, these viruses " hybridize " - exchange genetic information - with each

other and sometimes with other microbes such as bacteria. "

>>

>>

>>

>> _____

>>

>> From: [mailto: ] On Behalf Of

>> Sent: Wednesday, January 19, 2011 8:44 PM

>>

>> Subject: Re: XMRV in families affected by Autism and other Neuroimmune

Diseases

>>

>> Thats a really good question, . I have no idea if the antibodies to EBV

are cross-reactive to XMRV. Here is some information about EBV and how it

relates to XMRV:

>>

>> http://cfidsresearch.blogspot.com/2010/12/ebv-and-xmrv-new-disease-model.html

>>

>> -Jen

>>

>>

>>>> Now what......?!

>>>>

>>>> I am not trying to stir the pot.....it is just that we ALL have viruses in

our body. Correct me if I am wrong, but we don't even have cures for the current

viruses " treats " .....

>>>>

>>>> Just thinking out loud!!

>>>>

>>>>

>>>> .

>>>> Sent on the SprintÃ,® Now Network from my BlackBerryÃ,®

>>>>

>>>> XMRV in families affected by Autism and other Neuroimmune

Diseases

>>>>

>>>> I have attached a photo of the poster from Dr. Mikovits' presentation this

past week.Ã, Entire families were tested for the XMRVÃ, retrovirus and

antibodies, and the evidence shows thatÃ, almost the whole family is affected.Ã,

This is an infectious disease that should be addressed and deserves much

attention!

>>>> Ã,

>>>> Here is an explanation for the poster:

>>>> Ã, In each of the 6 clusters, the top 2 are the parents with the children

underneath them. LIGHT BLUE = FIBROMYALGIA, DARK BLUE = CFS, GREEN = AUTISM.

Under each shape is their XMRV result. V= virus found in culture, Av = antibody

test, NT=not tested

>>>>

>>>> Family 1, upper left corner ââ,¬ " One parent XMRV + for virus by culture

and XMRV + for antibody, one parent XMRV + for the antibody. Neither parent

symptomatic. Child with Autism, XMRV + for the virus.

>>>>

>>>> Family 2, top row, middle ââ,¬ " One parent with CFS and XMRV+ for

antibody. Two children with Autism; one XMRV+ for virus by culture, one XMRV+ by

antibody.

>>>>

>>>> Family 3, upper right corner ââ,¬ " One parent with CFS and XMRV+ for virus

by culture. Child with Autism, XMRV+ for virus by culture.

>>>>

>>>> Family 4, bottom left corner ââ,¬ " One parent with CFS and XMRV + for

virus by culture. Two children with Autism, both XMRV+ for virus by culture.

>>>>

>>>> Family 5, bottom row, middle ââ,¬ " One parent with CFS, Fibromyalgia and

XMRV+ by antivody. Child with Autism, XMRV+ for virus by culture and by

antibody.

>>>>

>>>> Family 6, bottom right corner ââ,¬ " One parent with CFS and XMRV+ by

antibody. Child with Autism, not tested for XMRV.

>>>>

>>>> A quick summary provided by Dr. Mikovits regarding families. She can

confirm, there is XMRV in children under the age of 5. To date they have

confirmed XMRV in 16 of 17 families with neuroimmune disease amongst multiple

members. Finally, that more work needs to be done to confirm pathogenesis and

transmission

>>>>

>>>>

>>>>

>>>>

>>>>

[Guest guest]

Ummm....

I tried with my second (I didn't have the diet during pregnancy - he was 9

months before I went dairy free when nursing, etc.

He reacted w/seizures to the DT & DTaP, probably started with the hep B to be

honest.  He woke every 20 min to an hour to scream for half an hour all night

every night until he was 18 months old.

I stopped most vacs after the DtaP, but at a year, just after starting to walk

( & he walked more sturdy on his FIRST day than his brother, 22 months older than

him, was walking.  A month later, we accepted the polio and hep b, and he

started staggering, falling to the left, and walking more like his brother, and

it lasted a month.  I never did another shot - got a religious waiver based on

my belief that my instincts as a mother were god-given.

I've seen the other parents that did the whole diet during pregnancy and nursing

get them on an alternated schedule, and they did well.  I would ONLY do it

after

Dr Goldberg had evaluated my kids labs, and not a drop would enter my child

before that.  Sorry - I don't totally blame vaccines, but regardless, I won't

get them.  I react badly to any type of injection - I can't even get a freakin'

B12 shot and I'm low - they make me feel horrible for days (cyanocalbumin -

haven't tried another type).  Even skin testing wrecked my stomach & triggered

IBS for over a year.

I would only do the vacs under Dr G's observation, not anyone elses.  That's

just my personal choice.  And I am out there with everyone stating vaccines

don't cause autism.  Even though Dr G gave me the go ahead to give the MMR on

my

youngest, I'm sorry - I just couldn't do it.  I'd have a panic attack at the

thought of even scheduling it.

Now, if measles came around, I'd be right there in line getting it then.  I

wouldn't be surprised if it set him back again, but I think on the protocol,

he'd bounce back ok - I think.  Just can't.

So it's totally your choice.  If the pertussis is available alone, I'd

consider

it, but it can cause reactions - but it's going around bad and it'd be worse to

get that than to have a negative reaction to the vaccine.  Other than that one,

if I were in your shoes, I doubt I'd be able to bring myself to it.  If I did,

they'd be spaced so far apart that he'd be 3 or 4 or 5 before he got the

MMR.     I can't even get a tetanus shot, personally.  I got very sick from

that

one, so if I step on a rusty nail, I guess I'll be worrying a while, because I'm

not getting one of those again either.

I would suspect, though, that by your following the diet, and I assume you still

are - refraining from dairy until he's two ... I'd bet that he could get each

vac (alternate schedule) and still be as bright as day.  I think that's a big

key to them tolerating it. 

I think the whole fact that he hasn't had a child become spectrum in that manner

is just very ... fascinating.  It means that even if we have XMRV, we still

have

some means to avoid autism by following some not really so difficult guidelines.

Now, this second son ... he developed fine until age 4-ish, then at 5, after

being off meds almost a year, developed full-blown CFIDS. At 9 he gets

diagnosed

PDD.  He didn't finish his vacs - not anywhere near finishing them.  (But I

wasn't doing - heck I ate whole grains and dairy and nuts every day of my

pregnancy.)  Dr G had always said his labs were much worse than his specturm

brothers. I did not eat that way with the first pregnancy - instead I ate sushi

sushi sushi (crab, not mercury laden stuff). Craved it like mad.   His

brother

didn't regress, but is back on meds too - and improved more despite some major

behavior issues and some perseverations.

I think it's totally your choice.  I just know several moms have done it - even

though quite worried if not terrified - and had absolutely no problems from it

.... because they followed the diet.  Is that not wierd??????

________________________________

From: Fight Autism <autism.fight@...>

" " < >

Cc: " " < >

Sent: Thu, January 20, 2011 3:26:17 PM

Subject: Re: Re: XMRV in families affected by Autism and other

Neuroimmune Diseases

 

So dr. Goldberg never had a sibling of his patients become autistic? I had my

newborn a while ago and I do follow his diet throughout pregnancy and now that

I'm nursing which I plan to do for 2 years. I know dr. G reassures about

vaccines but my gut instincts tells me not to vaccinate. My older son who was

diagnosed at age 2 did not do well at all with vaccines. It was after MMR that

we went to the we that night for a 105 temp and he never spoke again. Toty

regressed since then. Would you still vaccinate your baby if you experienced

what I did???

On Jan 20, 2011, at 12:43 PM, <thecolemans4@...> wrote:

> Well...

> Even if XMRV is a factor here, Dr G has never had a child born under his care

> who has a sibling w/autism or a Mom w/CFS develop autism if they followed low

> allergy/ diet while pregnant, plus the first two years, and did an

>alternate

>

> vaccine schedule. So even if we have XMRV, there should be things we can do to

> prevent future children from becoming ill. Just like nowadays people can be

> HIV+ for decades and yet still be vibrantly healthy.

> But I do hope a vaccine would become available for my boys' future wives. They

> have 10+ years to get there for us. If vaccines end up not causing autism,

then

>

> maybe the vaccine wouldn't be the worst thing...

> HTH

>

>

> ________________________________

> From: Sheryl Saturnino <ssaturnino@...>

>

> Sent: Thu, January 20, 2011 1:24:06 PM

> Subject: Re: Re: XMRV in families affected by Autism and other

> Neuroimmune Diseases

>

>

> That may be true, but the virus would be transmitted from person to person in

> bodily fluids, like HIV. So, if we all have it, my NT kids would have to tell

> any future spouses and maybe that would be a deal breaker if they knew they

> might have severely affected kids. You see my point?

> Who wants to sign up for that?

>

> The repercussions are very serious. There is currently no cure for any virus,

> that I know of. Just things to supress them, like acyclovir and valtrex and

for

>

> HIV-other drugs. Viruses are insidious organisms that take over cell

> replication to reproduce themselves in the body. Retroviruses are an even more

> complicated version.

>

> How do you guys feel about that? About repercussions for our children and

> grandchildren?

>

> ________________________________

> From: Lori <lbharris@...>

>

> Sent: Thu, January 20, 2011 10:11:02 AM

> Subject: RE: Re: XMRV in families affected by Autism and other

> Neuroimmune Diseases

>

> Isn`t that why we are to keep them on the ``` diet…to keep their immune

> system cooled off…

>

> Just from the diet alone, my other two children have been infinitely healthier

> then their older brother, who we have learned so much through his poor health

> over the years.

>

> I know Dr. G encourages keeping triggers away from my other children. It

> wouldn`t hurt anyone to follow the diet and eliminate a lot of the junk that

is

>

> in the average diet…especially kids! Ever look at the lunches other kids

bring

> to school. Aside from cheese, cheese, cheese (all cow!), it is additives,

> chemicals, colourings, sugar and generally garbage.

>

> No wonder kids are getting ill at epidemic rates (ADD, ADHD, Autism etc…). I

> think the virus (xmrv) is perhaps a big trigger, but a strong immune system

> should be able to keep it under control. Otherwise we would see the pandemic

> that experts keep warning us about.

>

> Just me two cents…

>

> Lori

>

> _____

>

> From: [mailto: ] On Behalf Of

>

> Sent: January-20-11 8:39 AM

>

> Subject: Re: Re: XMRV in families affected by Autism and other

> Neuroimmune Diseases

>

> I've thought about that a lot too.

>

> I think we have to weigh between the possibility that our NT kids could

develop

>

> CFS or lymphoma later, as well as have kids with autism later.

>

> That's why a vaccine for this (gasp!) is going to be important - so that our

> kids can have a better hope of having normal relationships later too...

>

>

>

> ________________________________

> From: Sheryl <ssaturnino@... <mailto:ssaturnino%40> >

> " <mailto:%40> "

> < <mailto:%40> >

> Sent: Wed, January 19, 2011 8:41:51 PM

> Subject: Re: Re: XMRV in families affected by Autism and other

> Neuroimmune Diseases

>

> While this research could be of huge importance to us, it frightens me to

think

>

> that my whole family might be affected. What does this mean for my 3 NT kids?

> Their future spouses and children? Social stigma? Etc.

>

> It's one thing to find out the prob., it's another to be told the problem,

with

>

> no permanent solution for my kids in the future. If this virus can be spread

> through bodily fluids: drinking from the same cup or sexually, where does

leave

>

> them? I am very overwhelmed by the ramifications.

>

> Sent from my iPhone

>

> On Jan 19, 2011, at 6:26 PM, " Crosss " <crosswilsons@...

> <mailto:crosswilsons%40socal.rr.com> > wrote:

>

> > And its these types of retroviruses that we think trigger the immune

system’s

>

> >inability to properly control the other viruses that NIDs treats – like HHV

6,

>

> >CMV, EBV etc. And I pose the question…. Is the system is firing off

producing

> >antibodies to these viruses – which react to the typical tests, but in fact

it

>

> >is trying to fight off something else – like a retrovirus?

> >

> > My son has constantly high IgG titres to EBV and CMV, but negative IGM

titres

>

> >for the last 12 years. An exhaustive study at UCLA by the Professor ,

> >head of pediatric immunology (at Dr G’s recommendation) on my son’s EBC

could

> >not, via PCR find any evidence of an EBV infection!

> >

> >

> > This is what we are talking about

> >

> >

> >

> > _____

> >

> > From: <mailto:%40>

> >[mailto: <mailto:%40> ] On Behalf Of

> >

> > Sent: Wednesday, January 19, 2011 12:02 PM

> > <mailto:%40>

> > Subject: Re: XMRV in families affected by Autism and other

Neuroimmune

>

> >Diseases

> >

> > I am not sure what you are getting at but XMRV is a retrovirus...another

> >retrovirus you may have heard of before? HIV. XMRV is a most likely a very

> >serious pathogen, maybe even the root cause of immune dysfunction in autism,

>CFS

>

> >

> >

> >and more. This retrovirus has been found in the most aggressive forms of

> >prostate cancer, and in breast cancer. This is probably one of the biggest

> >discoveries related to autism yet.

> >

> > --- In <mailto:%40>

> ><mailto:%40> , erikadyan71@...

> >

> >wrote:

> > >

> > > Now what......?!

> > >

> > > I am not trying to stir the pot.....it is just that we ALL have viruses in

> >our body. Correct me if I am wrong, but we don't even have cures for the

>current

>

> >

> >

> >viruses " treats " .....

> > >

> > > Just thinking out loud!!

> > >

> > >

> > > .

> > > Sent on the Sprint® Now Network from my BlackBerry®

> > >

> > > XMRV in families affected by Autism and other Neuroimmune

> >Diseases

> > >

> > > I have attached a photo of the poster from Dr. Mikovits' presentation this

> >past week. Entire families were tested for the XMRV retrovirus and

>antibodies,

>

> >

> >

> >and the evidence shows that almost the whole family is affected. This is

an

> >infectious disease that should be addressed and deserves much attention!

> > > Â

> > > Here is an explanation for the poster:

> > > Â In each of the 6 clusters, the top 2 are the parents with the children

> >underneath them. LIGHT BLUE = FIBROMYALGIA, DARK BLUE = CFS, GREEN = AUTISM.

> >Under each shape is their XMRV result. V= virus found in culture, Av =

>antibody

>

>

> >test, NT=not tested

> >

> > >

> > > Family 1, upper left corner †" One parent XMRV + for virus by culture

and

> >XMRV + for antibody, one parent XMRV + for the antibody. Neither parent

> >symptomatic. Child with Autism, XMRV + for the virus.

> >

> > >

> > > Family 2, top row, middle †" One parent with CFS and XMRV+ for

antibody.

>Two

>

> >

> >

> >children with Autism; one XMRV+ for virus by culture, one XMRV+ by antibody.

> >

> > >

> > > Family 3, upper right corner †" One parent with CFS and XMRV+ for

virus by

>

> >culture. Child with Autism, XMRV+ for virus by culture.

> >

> > >

> > > Family 4, bottom left corner †" One parent with CFS and XMRV + for

virus

>by

>

>

> >culture. Two children with Autism, both XMRV+ for virus by culture.

> >

> > >

> > > Family 5, bottom row, middle †" One parent with CFS, Fibromyalgia and

>XMRV+

>

>

> >by antivody. Child with Autism, XMRV+ for virus by culture and by antibody.

> >

> > >

> > > Family 6, bottom right corner †" One parent with CFS and XMRV+ by

>antibody.

>

>

> >Child with Autism, not tested for XMRV.

> >

> > >

> > > A quick summary provided by Dr. Mikovits regarding families. She can

>confirm,

>

> >

> >

> >there is XMRV in children under the age of 5. To date they have confirmed

XMRV

>

> >in 16 of 17 families with neuroimmune disease amongst multiple members.

>Finally,

>

> >

> >

> >that more work needs to be done to confirm pathogenesis and transmission

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Wierd thing about allergies.  I always had sinusitis, seasonal & pet allergies

-

I was always miserable. 

The only good thing my elevated ASO titers did for me was stop my allergies.

I actually saw a study years ago (a few, really), and I can't remember exactly

but there was a link to a high ASO lowering IgE or something ...

________________________________

From: Bill klimas <klimas_bill@...>

Sent: Thu, January 20, 2011 3:09:34 PM

Subject: Re: Re: XMRV in families affected by Autism and other

Neuroimmune Diseases

 

As far as XMRV and allergies it will effect adult differently than kids. Most

kids out grow allergies at puberty. Adult without allergies probably will not be

as compromised.

Just a thought

Bill

________________________________

From: <jlhank80@...>

Sent: Thu, January 20, 2011 3:24:13 PM

Subject: Re: XMRV in families affected by Autism and other Neuroimmune

Diseases

Lori, I have 2 NT kids besides, and they developed food allergies too! So now

the whole family is on a GF/CF diet along with any other triggers we have

figured out along the way (like nuts, egg yolks) cause problems for us too. Its

very possible that the whole family is affected and we need to do everything we

can to keep inflammation under control until we figure out who is or isnt

affected by this retrovirus. I wonder if I passed on what I have to my kids

since I nursed them...

-Jen

>

> > And its these types of retroviruses that we think trigger the immune

>system’s

>

> >inability to properly control the other viruses that NIDs treats †" like

HHV

>6,

>

> >CMV, EBV etc. And I pose the question…. Is the system is firing off

>producing

>

> >antibodies to these viruses †" which react to the typical tests, but in

fact

>it

>

> >is trying to fight off something else †" like a retrovirus?

> >

> > My son has constantly high IgG titres to EBV and CMV, but negative IGM

titres

>

>

> >for the last 12 years. An exhaustive study at UCLA by the Professor ,

> >head of pediatric immunology (at Dr G’s recommendation) on my

son’s EBC

>could

>

> >not, via PCR find any evidence of an EBV infection!

> >

> >

> > This is what we are talking about

> >

> >

> >

> > _____

> >

> > From: <mailto:%40>

>[mailto: <mailto:%40> ] On Behalf Of

>

> > Sent: Wednesday, January 19, 2011 12:02 PM

> > <mailto:%40>

> > Subject: Re: XMRV in families affected by Autism and other

Neuroimmune

>

>

> >Diseases

> >

> > I am not sure what you are getting at but XMRV is a retrovirus...another

> >retrovirus you may have heard of before? HIV. XMRV is a most likely a very

> >serious pathogen, maybe even the root cause of immune dysfunction in autism,

>CFS

>

> >and more. This retrovirus has been found in the most aggressive forms of

> >prostate cancer, and in breast cancer. This is probably one of the biggest

> >discoveries related to autism yet.

> >

> > --- In <mailto:%40>

><mailto:%40> , erikadyan71@

>

> >wrote:

> > >

> > > Now what......?!

> > >

> > > I am not trying to stir the pot.....it is just that we ALL have viruses in

> >our body. Correct me if I am wrong, but we don't even have cures for the

>current

>

> >viruses " treats " .....

> > >

> > > Just thinking out loud!!

> > >

> > >

> > > .

> > > Sent on the Sprint® Now Network from my BlackBerry®

> > >

> > > XMRV in families affected by Autism and other Neuroimmune

> >Diseases

> > >

> > > I have attached a photo of the poster from Dr. Mikovits' presentation this

> >past week. Entire families were tested for the XMRV retrovirus and

>antibodies,

>

> >and the evidence shows that almost the whole family is affected.Â

This is

>an

>

> >infectious disease that should be addressed and deserves much attention!

> > > Â

> > > Here is an explanation for the poster:

> > > Â In each of the 6 clusters, the top 2 are the parents with the

children

> >underneath them. LIGHT BLUE = FIBROMYALGIA, DARK BLUE = CFS, GREEN = AUTISM.

> >Under each shape is their XMRV result. V= virus found in culture, Av =

>antibody

>

> >test, NT=not tested

> >

> > >

> > > Family 1, upper left corner †" One parent XMRV + for virus by

culture

>and

>

> >XMRV + for antibody, one parent XMRV + for the antibody. Neither parent

> >symptomatic. Child with Autism, XMRV + for the virus.

> >

> > >

> > > Family 2, top row, middle †" One parent with CFS and XMRV+ for

>antibody. Two

>

> >children with Autism; one XMRV+ for virus by culture, one XMRV+ by antibody.

> >

> > >

> > > Family 3, upper right corner †" One parent with CFS and XMRV+

for virus

>

>by

>

> >culture. Child with Autism, XMRV+ for virus by culture.

> >

> > >

> > > Family 4, bottom left corner †" One parent with CFS and XMRV +

for

>virus by

>

> >culture. Two children with Autism, both XMRV+ for virus by culture.

> >

> > >

> > > Family 5, bottom row, middle †" One parent with CFS,

Fibromyalgia and

>XMRV+

>

> >by antivody. Child with Autism, XMRV+ for virus by culture and by antibody.

> >

> > >

> > > Family 6, bottom right corner †" One parent with CFS and XMRV+

by

>antibody.

>

> >Child with Autism, not tested for XMRV.

> >

> > >

> > > A quick summary provided by Dr. Mikovits regarding families. She can

>confirm,

>

> >there is XMRV in children under the age of 5. To date they have confirmed

XMRV

>

>

> >in 16 of 17 families with neuroimmune disease amongst multiple members.

>Finally,

>

> >that more work needs to be done to confirm pathogenesis and transmission

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Thanks.  I tend to be way too free with info.  I get burned repeatedly but I

naively do it all over again anyway.

I will hold on to that warning.

________________________________

From: Aronson <sailcharters@...>

Sent: Thu, January 20, 2011 10:16:16 AM

Subject: Re: Re: XMRV in families affected by Autism and other

Neuroimmune Diseases

 

Hi ,

 

I just wanted to share a recent experience I had with my son's school.. I

stupidly told his teachers that he tested positive for HHV 6 (Roseola) which,

btw, is actually very common in kids.  My son got sick at school one day

(nausea) and had alos been spitting.  Someone must have complained and the

school almost threatening to quarantine my son unless I got a lettter from

his

doctor.. this was over Roseola whch most kids have had by age 4. I was freaking

out over this b/c I'd have to keep my son home indefintely.

 

My advice is to never share  (or be very selective) medical information

especially with anything infectious like a virus with the school because they

can and will use it against you and your child.

 

From: <thecolemans4@...>

Subject: Re: Re: XMRV in families affected by Autism and other

Neuroimmune Diseases

Date: Thursday, January 20, 2011, 10:58 AM

 

So true.  I worry about our special ed teachers where I work, and I worry about

the typical kids that attend our school.  If we do have a serious virus, then I

want to know, taboo or not, so that I don't spread it.  I've behaved as if I

have a transmissable virus for many years anyway.  At the very least, I didn't

want to spread strep, which I've had chronic for years.

We have all the people with AIDS who have gone before us with this, and while

some people less knowledgable about it may still put stigma there, most

understand that they aren't going to catch it by being close by.  Now whether

or

not XMRV will be much easier to transmit (only time will tell), we will have to

address stigmas and educate as well, and we have the privacy laws to protect us

too.

It does make me wonder, if this ends up showing that it can spread via coughing

or sneezing, if the schools would have the right to quarantine our kids or

not. 

If that happened, I'm not sure what I'd do.

But it's not like many are taking it seriously for now, so no hurry on that

worry.  No point in borrowing worry from the future - we have enough right now.

  (Easier said than done.)

________________________________

From: <jlhank80@...>

Sent: Wed, January 19, 2011 10:48:35 PM

Subject: Re: XMRV in families affected by Autism and other Neuroimmune

Diseases

 

Sheryl, it does have some frightening ramifications, yet I am so hopeful,

because this is the beginning of some real help for our kids with autism, their

siblings, and even ourselves! There is something holding up research from moving

forward...funding!!! Maybe NOW people will get that our kids are actually SICK!

>

> > And its these types of retroviruses that we think trigger the immune

>system’s inability to properly control the other viruses that NIDs

treats †"

>like HHV 6, CMV, EBV etc. And I pose the question…. Is the system is

firing

>off producing antibodies to these viruses †" which react to the typical

tests,

>but in fact it is trying to fight off something else †" like a retrovirus?

> >

> > My son has constantly high IgG titres to EBV and CMV, but negative IGM

titres

>

>for the last 12 years. An exhaustive study at UCLA by the Professor ,

>head of pediatric immunology (at Dr G’s recommendation) on my

son’s EBC

>could not, via PCR find any evidence of an EBV infection!

>

> >

> > This is what we are talking about

> >

> >

> >

> > _____

> >

> > From: [mailto: ] On Behalf Of

>

> > Sent: Wednesday, January 19, 2011 12:02 PM

> >

> > Subject: Re: XMRV in families affected by Autism and other

Neuroimmune

>

>Diseases

> >

> > I am not sure what you are getting at but XMRV is a retrovirus...another

>retrovirus you may have heard of before? HIV. XMRV is a most likely a very

>serious pathogen, maybe even the root cause of immune dysfunction in autism,

CFS

>

>and more. This retrovirus has been found in the most aggressive forms of

>prostate cancer, and in breast cancer. This is probably one of the biggest

>discoveries related to autism yet.

> >

> > --- In <mailto:%40> , erikadyan71@

>wrote:

> > >

> > > Now what......?!

> > >

> > > I am not trying to stir the pot.....it is just that we ALL have viruses in

>our body. Correct me if I am wrong, but we don't even have cures for the

current

>

>viruses " treats " .....

> > >

> > > Just thinking out loud!!

> > >

> > >

> > > .

> > > Sent on the Sprint® Now Network from my BlackBerry®

> > >

> > > XMRV in families affected by Autism and other Neuroimmune

>Diseases

> > >

> > > I have attached a photo of the poster from Dr. Mikovits' presentation this

>past week. Entire families were tested for the XMRV retrovirus and

>antibodies, and the evidence shows that almost the whole family is

affected.Â

>

>This is an infectious disease that should be addressed and deserves much

>attention!

> > > Â

> > > Here is an explanation for the poster:

> > > Â In each of the 6 clusters, the top 2 are the parents with the

children

>underneath them. LIGHT BLUE = FIBROMYALGIA, DARK BLUE = CFS, GREEN = AUTISM.

>Under each shape is their XMRV result. V= virus found in culture, Av = antibody

>test, NT=not tested

>

> > >

> > > Family 1, upper left corner †" One parent XMRV + for virus by

culture

>and XMRV + for antibody, one parent XMRV + for the antibody. Neither parent

>symptomatic. Child with Autism, XMRV + for the virus.

>

> > >

> > > Family 2, top row, middle †" One parent with CFS and XMRV+ for

>antibody. Two children with Autism; one XMRV+ for virus by culture, one XMRV+

by

>

>antibody.

>

> > >

> > > Family 3, upper right corner †" One parent with CFS and XMRV+

for virus

>

>by culture. Child with Autism, XMRV+ for virus by culture.

>

> > >

> > > Family 4, bottom left corner †" One parent with CFS and XMRV +

for

>virus by culture. Two children with Autism, both XMRV+ for virus by culture.

>

> > >

> > > Family 5, bottom row, middle †" One parent with CFS,

Fibromyalgia and

>XMRV+ by antivody. Child with Autism, XMRV+ for virus by culture and by

>antibody.

>

> > >

> > > Family 6, bottom right corner †" One parent with CFS and XMRV+

by

>antibody. Child with Autism, not tested for XMRV.

>

> > >

> > > A quick summary provided by Dr. Mikovits regarding families. She can

>confirm, there is XMRV in children under the age of 5. To date they have

>confirmed XMRV in 16 of 17 families with neuroimmune disease amongst multiple

>members. Finally, that more work needs to be done to confirm pathogenesis and

>transmission

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Treating lyme and bartonella are much like treating . The treatment is

ongoing. My son has been on antibiotics for over 3 years and has completely

recovered in whole categories of symptoms.

Antibiotics and antiprotozoals have made my son VERY smart (way above age

level), gave him amazing receptive language skills and the ability to construct

gramatically perfect written and typed sentences, has healed his gut, his

balance, his fine and gross motor skills and eliminated anxiety.

What lyme treatments have not done for my son is enable him to actually talk and

also have social interest. We hope to gain some of these skills when we begin

antivirals. We hope to see Dr this spring in NY.

Caryn

>

>

> Hi Tammy,

>

> Thanks! Was your son treated with antibiotics, if so, was he treated for a

full six months?

>

>

>

> From: stoplyme@...

> Date: Wed, 26 Jan 2011 20:59:13 -0600

> Subject: Re: Re: XMRV in families affected by Autism and other

Neuroimmune Diseases

>

>

>

>

>

>

> Is that Bartonella? If yes, my doc. used Fry Labs. . My doc. looked

> at the photos of the cells,and his symptoms to diagnose my son with

> bartonella. Tammy F.

> > Has anyone on this site had their child tested for Bartonellosis?

> >

> >

> >

> >

> >

> >

> > From: crosswilsons@...

> > Date: Tue, 25 Jan 2011 13:50:46 -0800

> > Subject: RE: Re: XMRV in families affected by Autism and other

Neuroimmune Diseases

> >

> >

>

[Guest guest]

HI Caryn, I am so glad that your son has found so many gains through treating

lyme...have you heard of XMRV?  The Whittemore Institute has found

that every person that has been tested for chronic lyme actually has XMRV that

is reactivating the infection?  This is unpublished data so far, but Dr.

Mikovits discussed this at a recent conference.

-Jen

From: Caryn_Reid <caryn_reid@...>

Subject: Re: XMRV in families affected by Autism and other Neuroimmune

Diseases

Date: Saturday, January 29, 2011, 9:26 AM

 

Treating lyme and bartonella are much like treating . The treatment is

ongoing. My son has been on antibiotics for over 3 years and has completely

recovered in whole categories of symptoms.

Antibiotics and antiprotozoals have made my son VERY smart (way above age

level), gave him amazing receptive language skills and the ability to construct

gramatically perfect written and typed sentences, has healed his gut, his

balance, his fine and gross motor skills and eliminated anxiety.

What lyme treatments have not done for my son is enable him to actually talk and

also have social interest. We hope to gain some of these skills when we begin

antivirals. We hope to see Dr this spring in NY.

Caryn

>

>

> Hi Tammy,

>

> Thanks! Was your son treated with antibiotics, if so, was he treated for a

full six months?

>

>

>

> From: stoplyme@...

> Date: Wed, 26 Jan 2011 20:59:13 -0600

> Subject: Re: Re: XMRV in families affected by Autism and other

Neuroimmune Diseases

>

>

>

>

>

>

> Is that Bartonella? If yes, my doc. used Fry Labs. . My doc. looked

> at the photos of the cells,and his symptoms to diagnose my son with

> bartonella. Tammy F.

> > Has anyone on this site had their child tested for Bartonellosis?

> >

> >

> >

> >

> >

> >

> > From: crosswilsons@...

> > Date: Tue, 25 Jan 2011 13:50:46 -0800

> > Subject: RE: Re: XMRV in families affected by Autism and other

Neuroimmune Diseases

> >

> >

>

[Guest guest]

Thanks. Yes I have. I am on the XMRV board too and planning to pursue

antivirals next.

> >

> >

> > Hi Tammy,

> >

> > Thanks! Was your son treated with antibiotics, if so, was he treated for a

full six months?

> >

> >

> >

> > From: stoplyme@

> > Date: Wed, 26 Jan 2011 20:59:13 -0600

> > Subject: Re: Re: XMRV in families affected by Autism and other

Neuroimmune Diseases

> >

> >

> >

> >

> >

> >

> > Is that Bartonella? If yes, my doc. used Fry Labs. . My doc. looked

> > at the photos of the cells,and his symptoms to diagnose my son with

> > bartonella. Tammy F.

> > > Has anyone on this site had their child tested for Bartonellosis?

> > >

> > >

> > >

> > >

> > >

> > >

> > > From: crosswilsons@

> > > Date: Tue, 25 Jan 2011 13:50:46 -0800

> > > Subject: RE: Re: XMRV in families affected by Autism and other

Neuroimmune Diseases

> > >

> > >

> >

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Are the regular antivirals that are available having any effect on people who

may have XMRV?

Sent from my iPhone

On Jan 30, 2011, at 4:18 AM, " Caryn_Reid " <caryn_reid@...> wrote:

> Thanks. Yes I have. I am on the XMRV board too and planning to pursue

antivirals next.

>

>

> > >

> > >

> > > Hi Tammy,

> > >

> > > Thanks! Was your son treated with antibiotics, if so, was he treated for a

full six months?

> > >

> > >

> > >

> > > From: stoplyme@

> > > Date: Wed, 26 Jan 2011 20:59:13 -0600

> > > Subject: Re: Re: XMRV in families affected by Autism and other

Neuroimmune Diseases

> > >

> > >

> > >

> > >

> > >

> > >

> > > Is that Bartonella? If yes, my doc. used Fry Labs. . My doc. looked

> > > at the photos of the cells,and his symptoms to diagnose my son with

> > > bartonella. Tammy F.

> > > > Has anyone on this site had their child tested for Bartonellosis?

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > From: crosswilsons@

> > > > Date: Tue, 25 Jan 2011 13:50:46 -0800

> > > > Subject: RE: Re: XMRV in families affected by Autism and other

Neuroimmune Diseases

> > > >

> > > >

> > >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi Sheryl, there was a study done that showed that famvir and zovirax

(acyclovir) were affective against XMRV.  However, a number of HIV drugs were

the most effective.

Thats why if you are seeing a doctor like Dr. Goldberg or Dr. , you

are already doing the best treatment now available if your child is harboring

this retrovirus.

Also, addressing anything that causes inflammation also slows down XMRV

replication.

 

Hope this helps!

Jen

> Thanks. Yes I have. I am on the XMRV board too and planning to pursue

antivirals next.

>

>

> > >

> > >

> > > Hi Tammy,

> > >

> > > Thanks! Was your son treated with antibiotics, if so, was he treated for a

full six months?

> > >

> > >

> > >

> > > From: stoplyme@

> > > Date: Wed, 26 Jan 2011 20:59:13 -0600

> > > Subject: Re: Re: XMRV in families affected by Autism and other

Neuroimmune Diseases

> > >

> > >

> > >

> > >

> > >

> > >

> > > Is that Bartonella? If yes, my doc. used Fry Labs. . My doc. looked

> > > at the photos of the cells,and his symptoms to diagnose my son with

> > > bartonella. Tammy F.

> > > > Has anyone on this site had their child tested for Bartonellosis?

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > From: crosswilsons@

> > > > Date: Tue, 25 Jan 2011 13:50:46 -0800

> > > > Subject: RE: Re: XMRV in families affected by Autism and other

Neuroimmune Diseases

> > > >

> > > >

> > >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Thank you, Jen. I didn't know that these antivirals could help the XMRV.

Do have children on the protocol? If so, who are you seeing? And what

improvements are you seeing?

Sent from my iPhone

On Jan 30, 2011, at 11:48 AM, Hankinson <jlhank80@...> wrote:

> Hi Sheryl, there was a study done that showed that famvir and zovirax

(acyclovir) were affective against XMRV. However, a number of HIV drugs were

the most effective.

> Thats why if you are seeing a doctor like Dr. Goldberg or Dr. ,

you are already doing the best treatment now available if your child is

harboring this retrovirus.

> Also, addressing anything that causes inflammation also slows down XMRV

replication.

>

> Hope this helps!

> Jen

>

>

>

> > Thanks. Yes I have. I am on the XMRV board too and planning to pursue

antivirals next.

> >

> >

> > > >

> > > >

> > > > Hi Tammy,

> > > >

> > > > Thanks! Was your son treated with antibiotics, if so, was he treated for

a full six months?

> > > >

> > > >

> > > >

> > > > From: stoplyme@

> > > > Date: Wed, 26 Jan 2011 20:59:13 -0600

> > > > Subject: Re: Re: XMRV in families affected by Autism and other

Neuroimmune Diseases

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > Is that Bartonella? If yes, my doc. used Fry Labs. . My doc. looked

> > > > at the photos of the cells,and his symptoms to diagnose my son with

> > > > bartonella. Tammy F.

> > > > > Has anyone on this site had their child tested for Bartonellosis?

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > From: crosswilsons@

> > > > > Date: Tue, 25 Jan 2011 13:50:46 -0800

> > > > > Subject: RE: Re: XMRV in families affected by Autism and other

Neuroimmune Diseases

> > > > >

> > > > >

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Sheryl,

My son is recovered and in college at 22 as a result of the protocol.

Please know your son can get better with proper medical treatment and then

rehabilitation. No parent should accept that their child cannot be helped.

We treated with antivirals on the protocol. Maybe he has the XMRV

retrovirus, and it was addressed by using the antivirals and other things we

did to help his immune problem. I don't know the answer to that question.

However, is living proof that kids can get better.

was diagnosed when he was four years old. A psychiatrist who was the

leading authority on autism said my child would never be okay. According to

this expert, was going to end up in an institution or group home. Now

at 22, the only institution attends is a University where he studies

mechanical engineering on a merit scholarship. excels academically and

is in the Engineering Honor Society (top 10% GPA). He's a member of Sigma

Chi Fraternity and was president of the Jewish Student Association. And he

just received a NASA paid internship and scholarship. But more

importantly, is a typical college student who drinks an occasional

beer, goes on dates, stays out too late with friends and then sleeps through

eight o'clock classes. I couldn't be more proud!

Unbelievable as it seems, this is the same child who wanted to spend all

day, every day, plugging in a portable radio into each outlet in the house.

Back then, I wasn't sure if I had the strength to be more stubborn than my

son. There were mornings I didn't want to get out of bed to face another

day filled with autism. The worst times were when I didn't have a direction

or a plan. I was hanging onto my sanity by my fingernails. But, at the end

of the day, I was faced with a choice: let drift off forever into his

own world, or drag him kicking and screaming into ours.

Now it may look like we knew what we were doing back then. But we didn't.

It was trial and error to see what worked to help him. After we helped

medically, it was possible for him to learn. Behavioral and educational

interventions were used in conjunction with the medical treatment to catch

up on everything he missed. Initially, we used Applied Behavior

Analysis (ABA) for his rehabilitation and when he was ready we moved towards

more natural ways of teaching. It took years to correct 's deficits in

speech and social skills. It was almost like taking a stroke victim and

bringing them back. Our story is not about coping with autism, but rather

fighting back and not accepting the misconceptions associated with this

diagnosis. This process is definitely not for sissies or parents looking

for that magic cure. If you would like more info on what we did medically,

please email me privately.

Hope this helps,

Marcia

[Guest guest]

My son's taking it at night.  Alone, it doesn't do so much.  It's not usually

part of the protocol, and Dr G doesn't prescribe it.

But my son immediately reported the first trial that it made it easier for him

to think - this was 3 days into it, the period when I see benefits from

doxycycline.

It wouldn't bring a recovery on it's own for most kids, and the first time we

tried it didn't seem to do anything or go well (think it made him nauseaus - I

know doxycycline did), but this second time around it appears to do well.  It's

hard to say for sure, though, because we also did a diet change.

HTH

________________________________

From: Amber Schneider <momo3@...>

Sent: Thu, January 20, 2011 9:03:54 PM

Subject: Re: Re: XMRV in families affected by Autism and other

Neuroimmune Diseases

 

Has anybody looked at research regarding the antibiotic Minocycline? I found a

study being done on regressive " A " but couldn't find the results anywhere. If

somebody is able to read the results or other studies about this I am

interested.

This is a study about its affects on patients with AIDS

http://www.ncbi.nlm.nih.gov/pubmed/20479889

Amber

________________________________

From: <jlhank80@...>

Sent: Wed, January 19, 2011 8:44:08 PM

Subject: Re: XMRV in families affected by Autism and other Neuroimmune

Diseases

Thats a really good question, . I have no idea if the antibodies to EBV

are cross-reactive to XMRV. Here is some information about EBV and how it

relates to XMRV:

http://cfidsresearch.blogspot.com/2010/12/ebv-and-xmrv-new-disease-model.html

-Jen

>

> And its these types of retroviruses that we think trigger the immune

system’s

>

>inability to properly control the other viruses that NIDs treats †" like

HHV 6,

>

>CMV, EBV etc. And I pose the question…. Is the system is firing off

producing

>antibodies to these viruses †" which react to the typical tests, but in

fact it

>

>is trying to fight off something else †" like a retrovirus?

>

> My son has constantly high IgG titres to EBV and CMV, but negative IGM titres

>for the last 12 years. An exhaustive study at UCLA by the Professor ,

>head of pediatric immunology (at Dr G’s recommendation) on my

son’s EBC

>could not, via PCR find any evidence of an EBV infection!

>

>

>

>

> This is what we are talking about

>

>

>

>

>

>

>

>

>

> _____

>

> From: [mailto: ] On Behalf Of

> Sent: Wednesday, January 19, 2011 12:02 PM

>

> Subject: Re: XMRV in families affected by Autism and other Neuroimmune

>Diseases

>

>

>

>

>

> I am not sure what you are getting at but XMRV is a retrovirus...another

>retrovirus you may have heard of before? HIV. XMRV is a most likely a very

>serious pathogen, maybe even the root cause of immune dysfunction in autism,

CFS

>

>and more. This retrovirus has been found in the most aggressive forms of

>prostate cancer, and in breast cancer. This is probably one of the biggest

>discoveries related to autism yet.

>

> --- In <mailto:%40> , erikadyan71@

>wrote:

> >

> > Now what......?!

> >

> > I am not trying to stir the pot.....it is just that we ALL have viruses in

>our body. Correct me if I am wrong, but we don't even have cures for the

current

>

>viruses " treats " .....

> >

> > Just thinking out loud!!

> >

> >

> > .

> > Sent on the Sprint® Now Network from my BlackBerry®

> >

> > XMRV in families affected by Autism and other Neuroimmune

>Diseases

> >

> > I have attached a photo of the poster from Dr. Mikovits' presentation this

>past week. Entire families were tested for the XMRV retrovirus and

>antibodies, and the evidence shows that almost the whole family is

affected.Â

>

>This is an infectious disease that should be addressed and deserves much

>attention!

> > Â

> > Here is an explanation for the poster:

> > Â In each of the 6 clusters, the top 2 are the parents with the children

>underneath them. LIGHT BLUE = FIBROMYALGIA, DARK BLUE = CFS, GREEN = AUTISM.

>Under each shape is their XMRV result. V= virus found in culture, Av = antibody

>test, NT=not tested

>

> >

> > Family 1, upper left corner †" One parent XMRV + for virus by

culture and

>

>XMRV + for antibody, one parent XMRV + for the antibody. Neither parent

>symptomatic. Child with Autism, XMRV + for the virus.

>

> >

> > Family 2, top row, middle †" One parent with CFS and XMRV+ for

antibody.

>Two children with Autism; one XMRV+ for virus by culture, one XMRV+ by

antibody.

>

>

> >

> > Family 3, upper right corner †" One parent with CFS and XMRV+ for

virus

>by culture. Child with Autism, XMRV+ for virus by culture.

>

> >

> > Family 4, bottom left corner †" One parent with CFS and XMRV + for

virus

>by culture. Two children with Autism, both XMRV+ for virus by culture.

>

> >

> > Family 5, bottom row, middle †" One parent with CFS, Fibromyalgia

and

>XMRV+ by antivody. Child with Autism, XMRV+ for virus by culture and by

>antibody.

>

> >

> > Family 6, bottom right corner †" One parent with CFS and XMRV+ by

>antibody. Child with Autism, not tested for XMRV.

>

> >

> > A quick summary provided by Dr. Mikovits regarding families. She can

confirm,

>

>there is XMRV in children under the age of 5. To date they have confirmed XMRV

>in 16 of 17 families with neuroimmune disease amongst multiple members.

Finally,

>

>that more work needs to be done to confirm pathogenesis and transmission

> >

> >

> >

> >

> >

[Guest guest]

I understand that doxy is used in the CAP protocol to fight Chlamydia pneumoniae

infection.  This is also a bacteria that has been implicated in chronic fatigue

and autism. 

If you are infected with the bacteria it will typically make you sick when you

start treating due to the endotoxins that are released when the bacteria die. 

This might be why the stomach upset occurred when he first started.  I really

like the website cpnhelp.org for information on the topic. 

Effie

From: <thecolemans4@...>

Subject: Re: Re: XMRV in families affected by Autism and other

Neuroimmune Diseases

Date: Sunday, February 6, 2011, 9:43 PM

 

My son's taking it at night.  Alone, it doesn't do so much.  It's not

usually

part of the protocol, and Dr G doesn't prescribe it.

But my son immediately reported the first trial that it made it easier for him

to think - this was 3 days into it, the period when I see benefits from

doxycycline.

It wouldn't bring a recovery on it's own for most kids, and the first time we

tried it didn't seem to do anything or go well (think it made him nauseaus - I

know doxycycline did), but this second time around it appears to do well.  It's

hard to say for sure, though, because we also did a diet change.

HTH

________________________________

From: Amber Schneider <momo3@...>

Sent: Thu, January 20, 2011 9:03:54 PM

Subject: Re: Re: XMRV in families affected by Autism and other

Neuroimmune Diseases

 

Has anybody looked at research regarding the antibiotic Minocycline? I found a

study being done on regressive " A " but couldn't find the results anywhere. If

somebody is able to read the results or other studies about this I am

interested.

This is a study about its affects on patients with AIDS

http://www.ncbi.nlm.nih.gov/pubmed/20479889

Amber

________________________________

From: <jlhank80@...>

Sent: Wed, January 19, 2011 8:44:08 PM

Subject: Re: XMRV in families affected by Autism and other Neuroimmune

Diseases

Thats a really good question, . I have no idea if the antibodies to EBV

are cross-reactive to XMRV. Here is some information about EBV and how it

relates to XMRV:

http://cfidsresearch.blogspot.com/2010/12/ebv-and-xmrv-new-disease-model.html

-Jen

>

> And its these types of retroviruses that we think trigger the immune

system’s

>

>inability to properly control the other viruses that NIDs treats †" like

HHV 6,

>

>CMV, EBV etc. And I pose the question…. Is the system is firing off

producing

>antibodies to these viruses †" which react to the typical tests, but in

fact it

>

>is trying to fight off something else †" like a retrovirus?

>

> My son has constantly high IgG titres to EBV and CMV, but negative IGM titres

>for the last 12 years. An exhaustive study at UCLA by the Professor ,

>head of pediatric immunology (at Dr G’s recommendation) on my

son’s EBC

>could not, via PCR find any evidence of an EBV infection!

>

>

>

>

> This is what we are talking about

>

>

>

>

>

>

>

>

>

> _____

>

> From: [mailto: ] On Behalf Of

> Sent: Wednesday, January 19, 2011 12:02 PM

>

> Subject: Re: XMRV in families affected by Autism and other Neuroimmune

>Diseases

>

>

>

>

>

> I am not sure what you are getting at but XMRV is a retrovirus...another

>retrovirus you may have heard of before? HIV. XMRV is a most likely a very

>serious pathogen, maybe even the root cause of immune dysfunction in autism,

CFS

>

>and more. This retrovirus has been found in the most aggressive forms of

>prostate cancer, and in breast cancer. This is probably one of the biggest

>discoveries related to autism yet.

>

> --- In <mailto:%40> , erikadyan71@

>wrote:

> >

> > Now what......?!

> >

> > I am not trying to stir the pot.....it is just that we ALL have viruses in

>our body. Correct me if I am wrong, but we don't even have cures for the

current

>

>viruses " treats " .....

> >

> > Just thinking out loud!!

> >

> >

> > .

> > Sent on the Sprint® Now Network from my BlackBerry®

> >

> > XMRV in families affected by Autism and other Neuroimmune

>Diseases

> >

> > I have attached a photo of the poster from Dr. Mikovits' presentation this

>past week. Entire families were tested for the XMRV retrovirus and

>antibodies, and the evidence shows that almost the whole family is

affected.Â

>

>This is an infectious disease that should be addressed and deserves much

>attention!

> > Â

> > Here is an explanation for the poster:

> > Â In each of the 6 clusters, the top 2 are the parents with the children

>underneath them. LIGHT BLUE = FIBROMYALGIA, DARK BLUE = CFS, GREEN = AUTISM.

>Under each shape is their XMRV result. V= virus found in culture, Av = antibody

>test, NT=not tested

>

> >

> > Family 1, upper left corner †" One parent XMRV + for virus by

culture and

>

>XMRV + for antibody, one parent XMRV + for the antibody. Neither parent

>symptomatic. Child with Autism, XMRV + for the virus.

>

> >

> > Family 2, top row, middle †" One parent with CFS and XMRV+ for

antibody.

>Two children with Autism; one XMRV+ for virus by culture, one XMRV+ by

antibody.

>

>

> >

> > Family 3, upper right corner †" One parent with CFS and XMRV+ for

virus

>by culture. Child with Autism, XMRV+ for virus by culture.

>

> >

> > Family 4, bottom left corner †" One parent with CFS and XMRV + for

virus

>by culture. Two children with Autism, both XMRV+ for virus by culture.

>

> >

> > Family 5, bottom row, middle †" One parent with CFS, Fibromyalgia

and

>XMRV+ by antivody. Child with Autism, XMRV+ for virus by culture and by

>antibody.

>

> >

> > Family 6, bottom right corner †" One parent with CFS and XMRV+ by

>antibody. Child with Autism, not tested for XMRV.

>

> >

> > A quick summary provided by Dr. Mikovits regarding families. She can

confirm,

>

>there is XMRV in children under the age of 5. To date they have confirmed XMRV

>in 16 of 17 families with neuroimmune disease amongst multiple members.

Finally,

>

>that more work needs to be done to confirm pathogenesis and transmission

> >

> >

> >

> >

> >

[Guest guest]

As I underst

In a message dated 1/19/2011 11:23:52 A.M. Central Standard Time,

jlhank80@... writes:

I have attached a photo of the poster from Dr. Mikovits' presentation this

past week. Entire families were tested for the XMRV retrovirus and

antibodies, and the evidence shows that almost the whole family is affected.

This is an infectious disease that should be addressed and deserves much

attention!

Here is an explanation for the poster:

In each of the 6 clusters, the top 2 are the parents with the children

underneath them. LIGHT BLUE = FIBROMYALGIA, DARK BLUE = CFS, GREEN = AUTISM.

Under each shape is their XMRV result. V= virus found in culture, Av =

antibody test, NT=not tested

Family 1, upper left corner – One parent XMRV + for virus by culture and

XMRV + for antibody, one parent XMRV + for the antibody. Neither parent

symptomatic. Child with Autism, XMRV + for the virus.

Family 2, top row, middle – One parent with CFS and XMRV+ for antibody.

Two children with Autism; one XMRV+ for virus by culture, one XMRV+ by

antibody.

Family 3, upper right corner – One parent with CFS and XMRV+ for virus by

culture. Child with Autism, XMRV+ for virus by culture.

Family 4, bottom left corner – One parent with CFS and XMRV + for virus by

culture. Two children with Autism, both XMRV+ for virus by culture.

Family 5, bottom row, middle – One parent with CFS, Fibromyalgia and XMRV+

by antivody. Child with Autism, XMRV+ for virus by culture and by

antibody.

Family 6, bottom right corner – One parent with CFS and XMRV+ by antibody.

Child with Autism, not tested for XMRV.

A quick summary provided by Dr. Mikovits regarding families. She can

confirm, there is XMRV in children under the age of 5. To date they have

confirmed XMRV in 16 of 17 families with neuroimmune disease amongst multiple

members. Finally, that more work needs to be done to confirm pathogenesis and

transmission

[Non-text portions of this message have been removed]

[Guest guest]

Sorry, silly mouse jumped to send. As I understand it, only a few labs

provide accurate testing for this right now. If someone wanted to approach

their doctor for testing, what specific test and where would you recommend?

Gaylen

In a message dated 1/19/2011 11:23:52 A.M. Central Standard Time,

jlhank80@... writes:

I have attached a photo of the poster from Dr. Mikovits' presentation this

past week. Entire families were tested for the XMRV retrovirus and

antibodies, and the evidence shows that almost the whole family is affected.

This is an infectious disease that should be addressed and deserves much

attention!

Here is an explanation for the poster:

In each of the 6 clusters, the top 2 are the parents with the children

underneath them. LIGHT BLUE = FIBROMYALGIA, DARK BLUE = CFS, GREEN = AUTISM.

Under each shape is their XMRV result. V= virus found in culture, Av =

antibody test, NT=not tested

Family 1, upper left corner – One parent XMRV + for virus by culture and

XMRV + for antibody, one parent XMRV + for the antibody. Neither parent

symptomatic. Child with Autism, XMRV + for the virus.

Family 2, top row, middle – One parent with CFS and XMRV+ for antibody.

Two children with Autism; one XMRV+ for virus by culture, one XMRV+ by

antibody.

Family 3, upper right corner – One parent with CFS and XMRV+ for virus by

culture. Child with Autism, XMRV+ for virus by culture.

Family 4, bottom left corner – One parent with CFS and XMRV + for virus by

culture. Two children with Autism, both XMRV+ for virus by culture.

Family 5, bottom row, middle – One parent with CFS, Fibromyalgia and XMRV+

by antivody. Child with Autism, XMRV+ for virus by culture and by

antibody.

Family 6, bottom right corner – One parent with CFS and XMRV+ by antibody.

Child with Autism, not tested for XMRV.

A quick summary provided by Dr. Mikovits regarding families. She can

confirm, there is XMRV in children under the age of 5. To date they have

confirmed XMRV in 16 of 17 families with neuroimmune disease amongst multiple

members. Finally, that more work needs to be done to confirm pathogenesis and

transmission

[Non-text portions of this message have been removed]