Re: Drug found effective against XMRV virus in study

December 11, 2009

I doubt anyone would give this to a kids It is very debilitating and rough on

Aids patients. The mechanism that makes it work may well lead to new antivirals

but it will take time.

From: Javan <javanfirkins@...>

Subject: Drug found effective against XMRV virus in study

Date: Friday, December 11, 2009, 7:57 AM

Â

Does anyone know what Dr. Goldberg thinks of AZT anyway? Since it has

tested and shown to inhibit XMRV, I was wondering if someone could ask Dr.

Goldberg about it, and show him the study and results.

December 11, 2009

,

Dr. Goldberg told us that he feels that available retrovirals are too toxic

to be used on children... he talked about immune modulators maybe being a

better way to treat the kids for a retrovirus...

Caroline

Does anyone know what Dr. Goldberg thinks of AZT anyway? Since it has tested

and shown to inhibit XMRV, I was wondering if someone could ask Dr. Goldberg

about it, and show him the study and results.

December 11, 2009

its been overÂ a decade the talk of immune modulators? will this ever happen in

our kids lifetime?

________________________________

From: Caroline Glover <sfglover@...>

Sent: Fri, December 11, 2009 9:21:er a d11 AM

Subject: Re: Drug found effective against XMRV virus in study

Â

,

Dr. Goldberg told us that he feels that available retrovirals are too toxic

to be used on children... he talked about immune modulators maybe being a

better way to treat the kids for a retrovirus.. .

Caroline

Does anyone know what Dr. Goldberg thinks of AZT anyway? Since it has tested

and shown to inhibit XMRV, I was wondering if someone could ask Dr. Goldberg

about it, and show him the study and results.

December 11, 2009

In the December issue of Parents or Parenting, there is an article on an

adopted child with HIV. The article states that the new HIV drugs pretty

much mean those affected can live a full and healthy life.

Kristy Nardini

TazziniTM Stainless Steel Bottles

www.tazzini.com

kristy@...

Phone: 858.243.1929

Fax: 858.724.1418

P Please consider the environment before printing this email.

From: [mailto: ] On Behalf Of

Caroline Glover

Sent: Friday, December 11, 2009 6:21 AM

Subject: Re: Drug found effective against XMRV virus in study

,

Dr. Goldberg told us that he feels that available retrovirals are too toxic

to be used on children... he talked about immune modulators maybe being a

better way to treat the kids for a retrovirus...

Caroline

Does anyone know what Dr. Goldberg thinks of AZT anyway? Since it has tested

and shown to inhibit XMRV, I was wondering if someone could ask Dr. Goldberg

about it, and show him the study and results.

December 11, 2009

Kristy,

This is why it is so important the the connection between XMRV and Autism get

formally made and then publishes in a quality scientific journal. There is going

to be tons of research dollars made available in the coming months for CFS and

other diseases that are affiliated with this new retrovirus. Most will not

target children because as in CSF (and prostrate cancer) the population of

patients are primarily adults and the protocols developed may not be appropriate

to children.

In regard to the initiative to get kids tested at the Reno project I

disagree with basic concept. Our Kids would be the definitively wrong subject

group to use because:

1) They have been predetermined as having immune dysfunction and it could be

argued that they are not a impartial sampling of the Autism community.

2) If we test a subgroup that has been treated with anti-viral drugs we may well

have the opposite effect by not showing that there is an actual relationship

between Autism and the XMRV virus (It may be suppressed and not show

correlation) there by doing more harm than good.

3) All quality scientific research requires that any study be duplicatible by an

independent group using the same parameters and this would be virtually

impossible using our kids. There is no other group that has been treated using

this protocol so any independent follow up would be compromised before it could

be initiate and the original data would probably not be published.

What we should do is use a sample that is pre-existing in a university research

program that is independent of the initial study and there by be the first step

in getting the double blind studies accomplished and verified, This would be the

only way to not run a gauntlet of criticism and put this argument to rest and

move forward with treatment studies.

This is more doable than you may think.

The Miami School of Medicineâ€™s P. Hussman Institute for Human

Genomics is conducting a study to map the genetics of Autism. They already have

all samples and permissions and are quite keen on using their sample group to

verify the presence of the XMRV virus. Hussman is the money behind this and

there is a lot of money there.

About Hussman:

Hussman is the editor of Hussman Econometrics, and adjunct professor of

economics at the University of Michigan, he is the Hedge Fund Manager and

President of the Hussman Investment Fund and director of the Hussman Foundation.

Additionally he has a fifteen year old with Autism.

About The Hussman Foundation: (From the web page)

The mission of the P. Hussman Foundation is to provide life-changing

assistance through medical research, education, and direct aid to vulnerable

individuals having urgent needs or significant disabilities.

To achieve the greatest impact, the Foundation emphasizes projects having the

capacity to save or significantly improve lives, at a small financial commitment

per person affected. These projects are often on the margin that divides a

modest amount of help from nothing at all.

The Hussman Foundation seeks to â€œtip the balanceâ€ in critical areas where

research or intervention can significantly alter the course of individual lives,

and where resources would otherwise not be available. The Foundation also helps

organizations to develop grant-writing and reporting procedures so they can

secure long-term funding from broader sources.

Given the mission statement for this foundation, the controlling interest by

this singular person and his affinity to Autism research due to it's effect on

his immediate family and the interest already in place at the University of

Miami Hussman Institute and the availability of a sample group, facilities and

money this is the most timely, the most logical course of action for this group

is to get an audience with this gentleman and pitch our case.

Question: Does anyone on this list have a direct contact to this man?

From: Kristy Nardini <knardini@...>

Subject: RE: Drug found effective against XMRV virus in study

Date: Friday, December 11, 2009, 10:11 AM

Â

In the December issue of Parents or Parenting, there is an article on an

adopted child with HIV. The article states that the new HIV drugs pretty

much mean those affected can live a full and healthy life.

Kristy Nardini

TazziniTM Stainless Steel Bottles

www.tazzini. com

kristytazzini (DOT) com

Phone: 858.243.1929

Fax: 858.724.1418

P Please consider the environment before printing this email.

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

Caroline Glover

Sent: Friday, December 11, 2009 6:21 AM

groups (DOT) com

Subject: Re: Drug found effective against XMRV virus in study

,

Dr. Goldberg told us that he feels that available retrovirals are too toxic

to be used on children... he talked about immune modulators maybe being a

better way to treat the kids for a retrovirus.. .

Caroline

Does anyone know what Dr. Goldberg thinks of AZT anyway? Since it has tested

and shown to inhibit XMRV, I was wondering if someone could ask Dr. Goldberg

about it, and show him the study and results.

December 11, 2009

> Bill, could you clarify please is J Hussman keen on investigating xmrv

> presence or does he just have what is needed and now need us/parents to pitch

> the xmrv idea to him?

>

> Natasa

>

> Kristy,

> This is why it is so important the the connection between XMRV and Autism get

> formally made and then publishes in a quality scientific journal. There is

> going to be tons of research dollars made available in the coming months for

> CFS and other diseases that are affiliated with this new retrovirus. Most will

> not target children because as in CSF (and prostrate cancer) the population of

> patients are primarily adults and the protocols developed may not be

> appropriate to children.

>

> In regard to the initiative to get kids tested at the Reno project I

> disagree with basic concept. Our Kids would be the definitively wrong subject

> group to use because:

>

> 1) They have been predetermined as having immune dysfunction and it could be

> argued that they are not a impartial sampling of the Autism community.

>

> 2) If we test a subgroup that has been treated with anti-viral drugs we may

> well have the opposite effect by not showing that there is an actual

> relationship between Autism and the XMRV virus (It may be suppressed and not

> show correlation) there by doing more harm than good.

>

> 3) All quality scientific research requires that any study be duplicatible by

> an independent group using the same parameters and this would be virtually

> impossible using our kids. There is no other group that has been treated using

> this protocol so any independent follow up would be compromised before it

> could be initiate and the original data would probably not be published.

>

> What we should do is use a sample that is pre-existing in a university

> research program that is independent of the initial study and there by be the

> first step in getting the double blind studies accomplished and verified, This

> would be the only way to not run a gauntlet of criticism and put this argument

> to rest and move forward with treatment studies.

>

> This is more doable than you may think.

>

> The Miami School of Medicine¹s P. Hussman Institute for Human

> Genomics is conducting a study to map the genetics of Autism. They already

> have all samples and permissions and are quite keen on using their sample

> group to verify the presence of the XMRV virus. Hussman is the money

> behind this and there is a lot of money there.

>

> About Hussman:

> Hussman is the editor of Hussman Econometrics, and adjunct professor of

> economics at the University of Michigan, he is the Hedge Fund Manager and

> President of the Hussman Investment Fund and director of the Hussman

> Foundation. Additionally he has a fifteen year old with Autism.

>

> About The Hussman Foundation: (From the web page)

> The mission of the P. Hussman Foundation is to provide life-changing

> assistance through medical research, education, and direct aid to vulnerable

> individuals having urgent needs or significant disabilities.

>

> To achieve the greatest impact, the Foundation emphasizes projects having the

> capacity to save or significantly improve lives, at a small financial

> commitment per person affected. These projects are often on the margin that

> divides a modest amount of help from nothing at all.

>

> The Hussman Foundation seeks to ³tip the balance² in critical areas where

> research or intervention can significantly alter the course of individual

> lives, and where resources would otherwise not be available. The Foundation

> also helps organizations to develop grant-writing and reporting procedures so

> they can secure long-term funding from broader sources.

>

> Given the mission statement for this foundation, the controlling interest by

> this singular person and his affinity to Autism research due to it's effect on

> his immediate family and the interest already in place at the University of

> Miami Hussman Institute and the availability of a sample group, facilities and

> money this is the most timely, the most logical course of action for this

> group is to get an audience with this gentleman and pitch our case.

>

> Question: Does anyone on this list have a direct contact to this man?

>

> From: Kristy Nardini <knardini@...

> <mailto:knardini%40roadrunner.com> >

> Subject: RE: Drug found effective against XMRV virus in study

> <mailto:%40>

> Date: Friday, December 11, 2009, 10:11 AM

>

> In the December issue of Parents or Parenting, there is an article on an

>

> adopted child with HIV. The article states that the new HIV drugs pretty

>

> much mean those affected can live a full and healthy life.

>

> Kristy Nardini

>

> TazziniTM Stainless Steel Bottles

>

> www.tazzini. com

>

> kristytazzini (DOT) com

>

> Phone: 858.243.1929

>

> Fax: 858.724.1418

>

> P Please consider the environment before printing this email.

>

> From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

>

> Caroline Glover

>

> Sent: Friday, December 11, 2009 6:21 AM

>

> groups (DOT) com

>

> Subject: Re: Drug found effective against XMRV virus in study

>

> ,

>

> Dr. Goldberg told us that he feels that available retrovirals are too toxic

>

> to be used on children... he talked about immune modulators maybe being a

>

> better way to treat the kids for a retrovirus.. .

>

> Caroline

>

> Does anyone know what Dr. Goldberg thinks of AZT anyway? Since it has tested

>

> and shown to inhibit XMRV, I was wondering if someone could ask Dr. Goldberg

>

> about it, and show him the study and results.

>

December 12, 2009

Bill, I hear what you are saying and I believe you are likely right the drugs

are too toxic for children, but I should have been more specific I suppose in

saying that I was also curious about for adults. I am a 27 year old male with

confirmed Neuroimmune problems through NeuroSPECT scan... I am going to look

into getting tested for the XMRV virus. I cant even function normally in daily

life (on disability) and havent been able to for 7 years now, since I was 20

years old.

I personally would be willing to try AZT if I test positive for XMRV.

Bill does your sister have any recommendations for adults? Since I see AZT

being too toxic for children I understand the wait, but I dont know if I can

tolerate the thought of waiting 2-3 years or longer for other things to POSSIBLY

come out. If an adult was severe enough, and tested positive for XMRV, do you

think your sister would think it a possibility?

Thanks Bill

-

>

> Kristy,

> This is why it is so important the the connection between XMRV and Autism get

formally made and then publishes in a quality scientific journal. There is going

to be tons of research dollars made available in the coming months for CFS and

other diseases that are affiliated with this new retrovirus. Most will not

target children because as in CSF (and prostrate cancer) the population of

patients are primarily adults and the protocols developed may not be appropriate

to children.

>

> In regard to the initiative to get kids tested at the Reno project I

disagree with basic concept. Our Kids would be the definitively wrong subject

group to use because:

>

> 1) They have been predetermined as having immune dysfunction and it could be

argued that they are not a impartial sampling of the Autism community.

>

> 2) If we test a subgroup that has been treated with anti-viral drugs we may

well have the opposite effect by not showing that there is an actua

December 12, 2009

Did you see the NY imes interview? I have never discussed it with her but she

implied there were no successful protocols out there in the interview, That was

why this is such a huge breakthrough.

Bill

From: Javan <javanfirkins@...>

Subject: Re: Drug found effective against XMRV virus in study

Date: Saturday, December 12, 2009, 6:42 AM

Â

Bill, I hear what you are saying and I believe you are likely right the

drugs are too toxic for children, but I should have been more specific I suppose

in saying that I was also curious about for adults. I am a 27 year old male

with confirmed Neuroimmune problems through NeuroSPECT scan... I am going to

look into getting tested for the XMRV virus. I cant even function normally in

daily life (on disability) and havent been able to for 7 years now, since I was

20 years old.

I personally would be willing to try AZT if I test positive for XMRV.

Bill does your sister have any recommendations for adults? Since I see AZT

being too toxic for children I understand the wait, but I dont know if I can

tolerate the thought of waiting 2-3 years or longer for other things to POSSIBLY

come out. If an adult was severe enough, and tested positive for XMRV, do you

think your sister would think it a possibility?

Thanks Bill

-

>

> Kristy,

> This is why it is so important the the connection between XMRV and Autism get

formally made and then publishes in a quality scientific journal. There is going

to be tons of research dollars made available in the coming months for CFS and

other diseases that are affiliated with this new retrovirus. Most will not

target children because as in CSF (and prostrate cancer) the population of

patients are primarily adults and the protocols developed may not be appropriate

to children.

>

> In regard to the initiative to get kids tested at the Reno project I

disagree with basic concept. Our Kids would be the definitively wrong subject

group to use because:

>

> 1) They have been predetermined as having immune dysfunction and it could be

argued that they are not a impartial sampling of the Autism community.

>

> 2) If we test a subgroup that has been treated with anti-viral drugs we may

well have the opposite effect by not showing that there is an actua

December 12, 2009

â€¦have you tried Imunovir? Are you on the protocol and diet? I know

youâ€™ve posted this before, but I canâ€™t remember. XMRV is a different virus

from HIVâ€¦will the same medications for HIV work for XMRV?

Here is the link to the article I read on children with HIV. The toddler in the

article is treated with Kaletra, AZT and Epivir.

http://www.parenting.com/article/Mom/Work--Family/HIV-Adoption-Story

I thought this quote from the article is interesting (and encouraging),â€ The

fact is, science and medicine have come so far that " we would rather treat

pediatric HIV than juvenile diabetes, " says , M.D., chief of

pediatric infectious diseases at the University of Chicago. " If you look at how

well our medications work, there's no reason not to expect that Sachi will one

day see her grandchildren. " â€

I found this to be very interesting, as well: â€œthis insidious disease preys on

missed doses, and if adherence is not as close to 100 percent as possible, the

HIV virus can become resistant, rendering entire classes of medications

ineffective.â€

Kristy Nardini

TazziniTM Stainless Steel Bottles

www.tazzini.com

kristy@...

Phone: 858.243.1929

Fax: 858.724.1418

P Please consider the environment before printing this email.

From: [mailto: ] On Behalf Of Bill

klimas

Sent: Saturday, December 12, 2009 4:22 AM

Subject: Re: Re: Drug found effective against XMRV virus in study

Did you see the NY imes interview? I have never discussed it with her but she

implied there were no successful protocols out there in the interview, That was

why this is such a huge breakthrough.

Bill

From: Javan <javanfirkins@... <mailto:javanfirkins%40aol.com> >

Subject: Re: Drug found effective against XMRV virus in study

<mailto:%40>

Date: Saturday, December 12, 2009, 6:42 AM

Bill, I hear what you are saying and I believe you are likely right the drugs

are too toxic for children, but I should have been more specific I suppose in

saying that I was also curious about for adults. I am a 27 year old male with

confirmed Neuroimmune problems through NeuroSPECT scan... I am going to look

into getting tested for the XMRV virus. I cant even function normally in daily

life (on disability) and havent been able to for 7 years now, since I was 20

years old.

I personally would be willing to try AZT if I test positive for XMRV.

Bill does your sister have any recommendations for adults? Since I see AZT being

too toxic for children I understand the wait, but I dont know if I can tolerate

the thought of waiting 2-3 years or longer for other things to POSSIBLY come

out. If an adult was severe enough, and tested positive for XMRV, do you think

your sister would think it a possibility?

Thanks Bill

-

>

> Kristy,

> This is why it is so important the the connection between XMRV and Autism get

formally made and then publishes in a quality scientific journal. There is going

to be tons of research dollars made available in the coming months for CFS and

other diseases that are affiliated with this new retrovirus. Most will not

target children because as in CSF (and prostrate cancer) the population of

patients are primarily adults and the protocols developed may not be appropriate

to children.

>

> In regard to the initiative to get kids tested at the Reno project I

disagree with basic concept. Our Kids would be the definitively wrong subject

group to use because:

>

> 1) They have been predetermined as having immune dysfunction and it could be

argued that they are not a impartial sampling of the Autism community.

>

> 2) If we test a subgroup that has been treated with anti-viral drugs we may

well have the opposite effect by not showing that there is an actua

December 12, 2009

>

> didn¹t the interview take place before the AZT study came out? Until few weeks

> ago the concensus was that azt probably would not inhibit xmrv, but now there

> is indication that it might after all.... Still early days but things are

> moving fast

> Natasa

>

> Did you see the NY imes interview? I have never discussed it with her but she

> implied there were no successful protocols out there in the interview, That

> was why this is such a huge breakthrough.

> Bill

>

> From: Javan <javanfirkins@... <mailto:javanfirkins%40aol.com> >

> Subject: Re: Drug found effective against XMRV virus in study

> <mailto:%40>

> Date: Saturday, December 12, 2009, 6:42 AM

>

> Bill, I hear what you are saying and I believe you are likely right the drugs

> are too toxic for children, but I should have been more specific I suppose in

> saying that I was also curious about for adults. I am a 27 year old male with

> confirmed Neuroimmune problems through NeuroSPECT scan... I am going to look

> into getting tested for the XMRV virus. I cant even function normally in

> daily life (on disability) and havent been able to for 7 years now, since I

> was 20 years old.

>

> I personally would be willing to try AZT if I test positive for XMRV.

>

> Bill does your sister have any recommendations for adults? Since I see AZT

> being too toxic for children I understand the wait, but I dont know if I can

> tolerate the thought of waiting 2-3 years or longer for other things to

> POSSIBLY come out. If an adult was severe enough, and tested positive for

> XMRV, do you think your sister would think it a possibility?

>

> Thanks Bill

>

> -

>

>> >

>

>> > Kristy,

>

>> > This is why it is so important the the connection between XMRV and Autism

>> get formally made and then publishes in a quality scientific journal. There

>> is going to be tons of research dollars made available in the coming months

>> for CFS and other diseases that are affiliated with this new retrovirus. Most

>> will not target children because as in CSF (and prostrate cancer) the

>> population of patients are primarily adults and the protocols developed may

>> not be appropriate to children.

>

>> >

>

>> > In regard to the initiative to get kids tested at the Reno project I

>> disagree with basic concept. Our Kids would be the definitively wrong subject

>> group to use because:

>

>> >

>

>> > 1) They have been predetermined as having immune dysfunction and it could

>> be argued that they are not a impartial sampling of the Autism community.

>

>> >

>

>> > 2) If we test a subgroup that has been treated with anti-viral drugs we may

>> well have the opposite effect by not showing that there is an actua

>

December 13, 2009

That is what I was thinking, that I thought any interview Dr. Kilmas might have

done would have been before the published study saying AZT did seem to inhibit

the virus. Although the other meds did not seem to.

And yes, I have been on the protocol for more than two years now, plus the

diet. Unfortunately about the only things I have found to help have been

sticking to the diet and avoiding wheat. As well as imunovir, and most of

all avoiding chemical exposure, and breathing in VOC's- volitale organic

compounds, exhaust, perfume, synthetic. cleaning products, etc. That helps the

very most.

I wish I could say otherwise but the antivirals, the antifungals, antibiotics,

etc. have not seem to have been much if any help.

Taking Neurontin does help quite a bit, as well as Paxil, and low does Eskalith.

I am going to look further into taking low dose Naltrexone, which has been

reported to help a lot of people... in low dose it is supposed to act as an

immune modulator.

I want to take a sec. to mention how much I appreciate you all taking a bit of

time to comment on my situation and ask questions to see about offering some

helpful information- I really appreciate the desire to help out, it means a lot

to me.

Yeah I have been doing the protocols but have not had as much success as I would

like to have had.

-

December 13, 2009

I have a friend whose fairly severly autistic child (onset around 2) did an

experimental trial with AZT about 15 years ago. They could only have him on it

for a short time. She took movies every day and had him draw pictures everyday

to record the changes. They were amazing! In just a few days! But as soon as

they stopped it he reverted back. Amazingly, too his liver tests improved!

Re: Drug found effective against XMRV virus in study

Bill, I hear what you are saying and I believe you are likely right the drugs

are too toxic for children, but I should have been more specific I suppose in

saying that I was also curious about for adults. I am a 27 year old male with

confirmed Neuroimmune problems through NeuroSPECT scan... I am going to look

into getting tested for the XMRV virus. I cant even function normally in daily

life (on disability) and havent been able to for 7 years now, since I was 20

years old.

I personally would be willing to try AZT if I test positive for XMRV.

Bill does your sister have any recommendations for adults? Since I see AZT being

too toxic for children I understand the wait, but I dont know if I can tolerate

the thought of waiting 2-3 years or longer for other things to POSSIBLY come

out. If an adult was severe enough, and tested positive for XMRV, do you think

your sister would think it a possibility?

Thanks Bill

-

>

> Kristy,

> This is why it is so important the the connection between XMRV and Autism get

formally made and then publishes in a quality scientific journal. There is going

to be tons of research dollars made available in the coming months for CFS and

other diseases that are affiliated with this new retrovirus. Most will not

target children because as in CSF (and prostrate cancer) the population of

patients are primarily adults and the protocols developed may not be appropriate

to children.

>

> In regard to the initiative to get kids tested at the Reno project I

disagree with basic concept. Our Kids would be the definitively wrong subject

group to use because:

>

> 1) They have been predetermined as having immune dysfunction and it could be

argued that they are not a impartial sampling of the Autism community.

>

> 2) If we test a subgroup that has been treated with anti-viral drugs we may

well have the opposite effect by not showing that there is an actua

December 13, 2009

Thats good testimony that the core issue could very well be a retrovirus. It

will be cool when they develop appropriate vaccine or antiviral specific to this

new bug!

From: davswife@... <davswife@...>

Subject: Re: Re: Drug found effective against XMRV virus in study

Date: Sunday, December 13, 2009, 2:21 PM

Â

I have a friend whose fairly severly autistic child (onset around 2) did

an experimental trial with AZT about 15 years ago. They could only have him on

it for a short time. She took movies every day and had him draw pictures

everyday to record the changes. They were amazing! In just a few days! But as

soon as they stopped it he reverted back. Amazingly, too his liver tests

improved!

Re: Drug found effective against XMRV virus in study

Bill, I hear what you are saying and I believe you are likely right the drugs

are too toxic for children, but I should have been more specific I suppose in

saying that I was also curious about for adults. I am a 27 year old male with

confirmed Neuroimmune problems through NeuroSPECT scan... I am going to look

into getting tested for the XMRV virus. I cant even function normally in daily

life (on disability) and havent been able to for 7 years now, since I was 20

years old.

I personally would be willing to try AZT if I test positive for XMRV.

Bill does your sister have any recommendations for adults? Since I see AZT being

too toxic for children I understand the wait, but I dont know if I can tolerate

the thought of waiting 2-3 years or longer for other things to POSSIBLY come

out. If an adult was severe enough, and tested positive for XMRV, do you think

your sister would think it a possibility?

Thanks Bill

-

>

> Kristy,

> This is why it is so important the the connection between XMRV and Autism get

formally made and then publishes in a quality scientific journal. There is going

to be tons of research dollars made available in the coming months for CFS and

other diseases that are affiliated with this new retrovirus. Most will not

target children because as in CSF (and prostrate cancer) the population of

patients are primarily adults and the protocols developed may not be appropriate

to children.

>

> In regard to the initiative to get kids tested at the Reno project I

disagree with basic concept. Our Kids would be the definitively wrong subject

group to use because:

>

> 1) They have been predetermined as having immune dysfunction and it could be

argued that they are not a impartial sampling of the Autism community.

>

> 2) If we test a subgroup that has been treated with anti-viral drugs we may

well have the opposite effect by not showing that there is an actua

December 14, 2009

, I understand your plight! My daughter has been a patient for over a

year and she also has MCS. The NNY Autism Center sent us to a doctor who does a

treatment called P/N and it temporarily reverses allergies/CNS reactions to

chemicals and allergens. My daughter is even allergic to rice and potato

(staples in the GF/CF diet). Formaldehyde (this is impossible to avoid!) and

glycerin are big problems for my daughter but we take care of those allergies

with just two drops under her tongue. Email me personally if you want to know

more about it. The American Academy of Environmental Medicine doctors do this

treatment, not just any allergist.

-

>

> That is what I was thinking, that I thought any interview Dr. Kilmas might

have done would have been before the published study saying AZT did seem to

inhibit the virus. Although the other meds did not seem to.

>

> And yes, I have been on the protocol for more than two years now, plus

the diet. Unfortunately about the only things I have found to help have been

sticking to the diet and avoiding wheat. As well as imunovir, and most of

all avoiding chemical exposure, and breathing in VOC's- volitale organic

compounds, exhaust, perfume, synthetic. cleaning products, etc. That helps the

very most.

>

> I wish I could say otherwise but the antivirals, the antifungals, antibiotics,

etc. have not seem to have been much if any help.

>

> Taking Neurontin does help quite a bit, as well as Paxil, and low does

Eskalith.

>

> I am going to look further into taking low dose Naltrexone, which has been

reported to help a lot of people... in low dose it is supposed to act as an

immune modulator.

>

> I want to take a sec. to mention how much I appreciate you all taking a bit of

time to comment on my situation and ask questions to see about offering some

helpful information- I really appreciate the desire to help out, it means a lot

to me.

> Yeah I have been doing the protocols but have not had as much success as I

would like to have had.

>

> -

>

December 14, 2009

Hi -I am also allergic to formaldehyde and it is in so many products, from

shampoos, moisturizers, makeup,soap, etc. Where is the doctor located you

mentioned and what is the full name of the medication to treat the allergies?

Thanks, Gayle