Jump to content
RemedySpot.com

Fw: Imunovir & Dr Goldberg

Rate this topic


Guest guest

Recommended Posts

I just posted this on the list and I thought some of you would be

interested. Read down the thread to get the gist of the post!

Bill

----- Forwarded Message ----

From: Bill klimas <klimas_bill@...>

Kay <kp_mlist@...>

Cc:

Sent: Tue, August 24, 2010 9:38:12 PM

Subject: Re: Imunovir & Dr Goldberg

Kay sorry you can not get posted on the list but I CC'ed the list so

everyone is in the loop. followers read down the post in that Kay and I

have been conversing off list.

No Dr K does not see children but she is an integral part of the protocol we are

on. No Dr Klimas is focused on CFS and Gulf War adults (She works 120+ hours a

week with these folks). She is a board member on the foundation and

brought Imunovir among other aspects of this treatment to the table. Her focus

is on research and does not see children, in in her words " I have no experience

with these meds effects on kids and I will not go there any time soon " . She

can't. Her focus is finding a cure to neuroimmune disorders and right now her

focus is on adults. My son is not her patient, she sent us to Dr G. It is

helpful having a scientist in the family that is focused on my sons illness even

if it is a related illness and I will share what I can.

I will say the she is very excited about the new retrovirus and sits on the

committee that is reviewing the national blood supply for the NIH, in doing so

is very connected with all of the current research. I asked her the time line

and she responded that we will know if this is a root cause in the next 6-9

months. " IF " and this is a VERY big IF, this new family of virus is a root cause

2011 may be a very big year in the world of Autism

I will ask her if any of her associates are focused on this facet of the illness

and see children but do not get excited. When I worked to get this out on the

SCIA (No longer working with them) She told me I would drive parents crazy in

that there is " NO " money for immune research and few Doctors that truly

understand immune and neuroinflammation and Autism. Scientists go where the

dollars are. Look for the WPI and CSF to find us a cure!

Call Autism speaks and give them an ear full, We need their bucks in the correct

sector!

Bill

________________________________

From: Kay <kp_mlist@...>

Bill klimas <klimas_bill@...>

Sent: Tue, August 24, 2010 6:01:27 PM

Subject: Re: Imunovir & Dr Goldberg

Got it. Thanks Bill.

Does she see kids with the Autism label in clinical practice? We live in

Northern CA so is a big trek to goto Florida.

Are there other immunologist perhaps in the west coast that are close to her

research? We asked the folks at Stanford but doesn't look like they buy into the

immune connection just yet.

Thanks,

________________________________

From: Bill klimas <klimas_bill@...>

Kay <kp_mlist@...>

Sent: Tue, August 24, 2010 2:32:00 PM

Subject: Re: Imunovir & Dr Goldberg

Kay

I believe she addresses that. She is not only a clinician and researcher but

also director of the U of M immunology lab. She uses NK cell counts and NK cell

function as a surrogate for cytotoxic T cell function. It is in the immune

panels that she runs. I do know she has ID'ed several markers that she can use

to determine the severity of CSF in her patients but I am not up on those and I

do not believe that any other immunologist is using these markers. Primarily

research driven.

________________________________

From: Kay <kp_mlist@...>

klimas_bill@...

Sent: Tue, August 24, 2010 4:58:24 PM

Subject: Re: Imunovir & Dr Goldberg

Bill, This is interesting to know. My posts don't make it to the board so

am writing off the list.

Are there any biomarkers for low granzyme & perforin content or how do we

ascertain that the cells are poorly functioning?

________________________________

From: Bill klimas <klimas_bill@...>

Sent: Tue, August 24, 2010 1:18:33 PM

Subject: Re: Imunovir & Dr Goldberg

Dr Klimas' explanation of the function of imunovir

In my experience imunovir increases NK cell function by increasing the amount of

granzymes/cell; in effect improving the ability of the cell to kill virally

infected targets. I usually see elevated NK cell numbers when the function is

poor - a compensation for poor function, making increasing number of cells to

do

the job. Its not all bad to have compensatory mechanisms, it is worse when

there is poor function and a low number.

In my research area, Chronic Fatigue Syndrome and Gulf War Illness, NK cell

function is poor because there is a low granzyme and perforin content of the

cell. This is also true of cytotoxic T cells, the other antiviral cell and

possibly the more important of the two - its function is harder to measure, so

we have used NK cell function as a surrogate for cytotoxic T cell function,

after proving that the granzyme and perforin content of both NK and of

Cytotoxic T cells is low.

________________________________

From: Robyn & Greg Coggins <rngcoggs@...>

Sent: Tue, August 24, 2010 3:31:59 PM

Subject: Re: Imunovir & Dr Goldberg

Thanks, Bill.

Robyn

________________________________

From: Bill klimas <klimas_bill@...>

Sent: Tue, August 24, 2010 10:57:34 AM

Subject: Re: Imunovir & Dr Goldberg

Yes according to Dr K. I will bring down high NK . I will drop her a note and

ask her to explain then forward it back to the list.

________________________________

From: Robyn & Greg Coggins <rngcoggs@...>

Sent: Tue, August 24, 2010 1:26:27 PM

Subject: Re: Imunovir & Dr Goldberg

Hi, Bill.

Another question about Imunovir...does it function to normalize NK cells whether

they're high or low?

Thanks!

Robyn

________________________________

From: Bill klimas <klimas_bill@...>

Sent: Tue, August 24, 2010 5:37:44 AM

Subject: Re: Imunovir & Dr Goldberg

Sorry if i was not clear. We are on and have been on Acyclovir continuously for

several years. The Imunovir is not an antiviral in the sense that Valtrex, Famir

or Acyclovir. These three block vital replication. Imunovir is an Immune

modulator that increases NK cell function and counts. In that it supports the

immune systems effectiveness it acts as an antiviral. Dr Klimas explained after

several months on Imunovir the immune system hits a plateau. To get additional

benefit you need to take a hiatus - (Dr K does a one month break after six

months - Dr G does a two week break after three months) and when you restart it

you can boost the immune system another notch..

________________________________

From: " Googahly@... " <Googahly@...>

Sent: Tue, August 24, 2010 12:00:59 AM

Subject: Re: Imunovir & Dr Goldberg

Do you take another antiviral during the hiatus?

Gaylen

In a message dated 8/16/2010 1:49:10 P.M. Central Daylight Time,

klimas_bill@... writes:

yes, We were on a pulse dosage such as yours for six months (Dr Klimas'

recommendation) and the effects hit a plateau. We then took a two month

hiatus

and restarted several months ago with good gains. We do five tablets a day

-

week one and three tables a day - week two, week ends off. Uric acid is

generally slightly high 6.5 +/- on monthly blood work with no negative

side

effects

________________________________

From: Fund <_susan_fund@..._ (mailto:susan_fund@...) >

_ _ (mailto: )

Sent: Mon, August 16, 2010 2:27:48 PM

Subject: Imunovir & Dr Goldberg

My son has been on Imunovir for 6 months w/ some minor gains. My DAN doc

follows

Dr Cheney's dosing schedule for the Imunovir. First week 6 tablets per day

Mon

thru Fri and none on Sat and Sun. The next week It's just 2 tablets Mon

thru Fri

with none on Sat and Sun.You rotate week one and week two for 2 months and

then

take a month off. Dr Cheney says that if you dose it consistently the

Imunovir

will stop working so you need to pulse it and change the dose to trick the

immune system into kicking in.

Does Dr Goldberg recommend changing the dose or keeping a constant dose?

Has

anyone who has used Imunovir consistently found it to stop working?

Thanks!

[Non-text portions of this message have been removed]

Link to comment
Share on other sites

Hi

Newbies here and glad to see conversations on Immunovir.

My son is 14.5kg and is currently on his second week of immunovir. Unfortunately

as prescribed, he is on 500mg per day in 3 doses for the past two weeks, and I

wasn't told to vary the dosage weekly and neither pauses in between.

Is it too late to go into into Dr. Cheney's protocal (in terms of varying the

dosage everyweek and pulse it on the weekend and on the 3rd month)?

The part of the world i'm from, DAN is scarce and I doubt there is any

experts who wants to work on ASD children and so really hope you could advise.

Let me know this plan of mine makes sense:

Month 1:

Week 1 - Week 2: 500mg per day continuous (this has happened and could't be

undone)

Week 3: 750mg per day, stop over the weekend

Week 4: 500mg per day, stop over the weekend

Month 2:

week 1: 750mg per day,

Week 2: 500mg per day

Week 3: repeat week 1

Week 4: repeat week 2

Pause for 1 month and repeat the above.

My son is on Rx Methisoprinol liquid, 50mg/ml.

And I haven't done any other antiviral protocol.

Looking forward to your reply.

Shan

>

> I just posted this on the list and I thought some of you would be

> interested. Read down the thread to get the gist of the post!

> Bill

>

>

>

> ----- Forwarded Message ----

> From: Bill klimas <klimas_bill@...>

> Kay <kp_mlist@...>

> Cc:

> Sent: Tue, August 24, 2010 9:38:12 PM

> Subject: Re: Imunovir & Dr Goldberg

>

>

> Kay sorry you can not get posted on the list but I CC'ed the list so

> everyone is in the loop. followers read down the post in that Kay and I

> have been conversing off list.

> No Dr K does not see children but she is an integral part of the protocol we

are

> on. No Dr Klimas is focused on CFS and Gulf War adults (She works 120+ hours

a

> week with these folks). She is a board member on the foundation and

> brought Imunovir among other aspects of this treatment to the table. Her focus

> is on research and does not see children, in in her words " I have no

experience

> with these meds effects on kids and I will not go there any time soon " . She

> can't. Her focus is finding a cure to neuroimmune disorders and right now her

> focus is on adults. My son is not her patient, she sent us to Dr G. It is

> helpful having a scientist in the family that is focused on my sons illness

even

> if it is a related illness and I will share what I can.

>

> I will say the she is very excited about the new retrovirus and sits on the

> committee that is reviewing the national blood supply for the NIH, in doing so

> is very connected with all of the current research. I asked her the time line

> and she responded that we will know if this is a root cause in the next 6-9

> months. " IF " and this is a VERY big IF, this new family of virus is a root

cause

> 2011 may be a very big year in the world of Autism

>

> I will ask her if any of her associates are focused on this facet of the

illness

> and see children but do not get excited. When I worked to get this out on the

> SCIA (No longer working with them) She told me I would drive parents crazy in

> that there is " NO " money for immune research and few Doctors that truly

> understand immune and neuroinflammation and Autism. Scientists go where the

> dollars are. Look for the WPI and CSF to find us a cure!

>

> Call Autism speaks and give them an ear full, We need their bucks in the

correct

> sector!

>

> Bill

>

>

>

>

> ________________________________

> From: Kay <kp_mlist@...>

> Bill klimas <klimas_bill@...>

> Sent: Tue, August 24, 2010 6:01:27 PM

> Subject: Re: Imunovir & Dr Goldberg

>

>

> Got it. Thanks Bill.

> Does she see kids with the Autism label in clinical practice? We live in

> Northern CA so is a big trek to goto Florida.

> Are there other immunologist perhaps in the west coast that are close to her

> research? We asked the folks at Stanford but doesn't look like they buy into

the

> immune connection just yet.

>

> Thanks,

>

>

>

> ________________________________

> From: Bill klimas <klimas_bill@...>

> Kay <kp_mlist@...>

> Sent: Tue, August 24, 2010 2:32:00 PM

> Subject: Re: Imunovir & Dr Goldberg

>

>

> Kay

> I believe she addresses that. She is not only a clinician and researcher but

> also director of the U of M immunology lab. She uses NK cell counts and NK

cell

> function as a surrogate for cytotoxic T cell function. It is in the immune

> panels that she runs. I do know she has ID'ed several markers that she can use

> to determine the severity of CSF in her patients but I am not up on those and

I

> do not believe that any other immunologist is using these markers. Primarily

> research driven.

>

>

>

>

>

> ________________________________

> From: Kay <kp_mlist@...>

> klimas_bill@...

> Sent: Tue, August 24, 2010 4:58:24 PM

> Subject: Re: Imunovir & Dr Goldberg

>

>

> Bill, This is interesting to know. My posts don't make it to the board so

> am writing off the list.

> Are there any biomarkers for low granzyme & perforin content or how do we

> ascertain that the cells are poorly functioning?

>

>

>

> ________________________________

> From: Bill klimas <klimas_bill@...>

>

> Sent: Tue, August 24, 2010 1:18:33 PM

> Subject: Re: Imunovir & Dr Goldberg

>

>

> Dr Klimas' explanation of the function of imunovir

>

> In my experience imunovir increases NK cell function by increasing the amount

of

>

> granzymes/cell; in effect improving the ability of the cell to kill virally

> infected targets. I usually see elevated NK cell numbers when the function

is

> poor - a compensation for poor function, making increasing number of cells to

> do

>

> the job. Its not all bad to have compensatory mechanisms, it is worse when

> there is poor function and a low number.

>

> In my research area, Chronic Fatigue Syndrome and Gulf War Illness, NK cell

> function is poor because there is a low granzyme and perforin content of the

> cell. This is also true of cytotoxic T cells, the other antiviral cell and

> possibly the more important of the two - its function is harder to measure, so

> we have used NK cell function as a surrogate for cytotoxic T cell function,

> after proving that the granzyme and perforin content of both NK and of

> Cytotoxic T cells is low.

>

> ________________________________

> From: Robyn & Greg Coggins <rngcoggs@...>

>

> Sent: Tue, August 24, 2010 3:31:59 PM

> Subject: Re: Imunovir & Dr Goldberg

>

> Thanks, Bill.

>

> Robyn

>

> ________________________________

> From: Bill klimas <klimas_bill@...>

>

> Sent: Tue, August 24, 2010 10:57:34 AM

> Subject: Re: Imunovir & Dr Goldberg

>

> Yes according to Dr K. I will bring down high NK . I will drop her a note and

> ask her to explain then forward it back to the list.

>

> ________________________________

> From: Robyn & Greg Coggins <rngcoggs@...>

>

> Sent: Tue, August 24, 2010 1:26:27 PM

> Subject: Re: Imunovir & Dr Goldberg

>

> Hi, Bill.

>

> Another question about Imunovir...does it function to normalize NK cells

whether

>

>

> they're high or low?

>

> Thanks!

>

> Robyn

>

> ________________________________

> From: Bill klimas <klimas_bill@...>

>

> Sent: Tue, August 24, 2010 5:37:44 AM

> Subject: Re: Imunovir & Dr Goldberg

>

> Sorry if i was not clear. We are on and have been on Acyclovir continuously

for

> several years. The Imunovir is not an antiviral in the sense that Valtrex,

Famir

>

>

> or Acyclovir. These three block vital replication. Imunovir is an Immune

> modulator that increases NK cell function and counts. In that it supports the

> immune systems effectiveness it acts as an antiviral. Dr Klimas explained

after

>

>

> several months on Imunovir the immune system hits a plateau. To get

additional

> benefit you need to take a hiatus - (Dr K does a one month break after six

> months - Dr G does a two week break after three months) and when you restart

it

> you can boost the immune system another notch..

>

> ________________________________

> From: " Googahly@... " <Googahly@...>

>

> Sent: Tue, August 24, 2010 12:00:59 AM

> Subject: Re: Imunovir & Dr Goldberg

>

> Do you take another antiviral during the hiatus?

> Gaylen

>

> In a message dated 8/16/2010 1:49:10 P.M. Central Daylight Time,

> klimas_bill@... writes:

>

> yes, We were on a pulse dosage such as yours for six months (Dr Klimas'

> recommendation) and the effects hit a plateau. We then took a two month

> hiatus

> and restarted several months ago with good gains. We do five tablets a day

> -

> week one and three tables a day - week two, week ends off. Uric acid is

> generally slightly high 6.5 +/- on monthly blood work with no negative

> side

> effects

>

> ________________________________

> From: Fund <_susan_fund@..._ (mailto:susan_fund@...) >

> _ _ (mailto: )

> Sent: Mon, August 16, 2010 2:27:48 PM

> Subject: Imunovir & Dr Goldberg

>

> My son has been on Imunovir for 6 months w/ some minor gains. My DAN doc

> follows

> Dr Cheney's dosing schedule for the Imunovir. First week 6 tablets per day

> Mon

> thru Fri and none on Sat and Sun. The next week It's just 2 tablets Mon

> thru Fri

> with none on Sat and Sun.You rotate week one and week two for 2 months and

> then

> take a month off. Dr Cheney says that if you dose it consistently the

> Imunovir

> will stop working so you need to pulse it and change the dose to trick the

> immune system into kicking in.

>

> Does Dr Goldberg recommend changing the dose or keeping a constant dose?

> Has

> anyone who has used Imunovir consistently found it to stop working?

>

> Thanks!

>

>

> [Non-text portions of this message have been removed]

>

>

Link to comment
Share on other sites

Thank you Bill for this. I am waaaaaaay behind on my emails so I am thankful I

did not miss this. Monday was a HUGE day and unfortunately, I had little time to

absorb it all. Oh, I forgot, there is a mother with a 29 year old adult ASD son.

This kid is in bad shape. He does well on Motrin but she does not want to give

it to him very often. I asked her to contact you but I don't remember what you

do to control inflammation. Do not you use aspirn/ibuprofen for your son. I am

thinking about doing this for my son as well. Thank you.

 

All the best,

 

Jill

Jill Boyer, 5544 Glasgow Place, Columbus, OH 43235, USA

email: sjillboyer@..., phone: 614-538-8986

 

From: Bill klimas <klimas_bill@...>

Subject: Fw: Imunovir & Dr Goldberg

mb12 valtrex

Cc:

Date: Tuesday, August 24, 2010, 9:46 PM

 

I just posted this on the list and I thought some of you would be

interested. Read down the thread to get the gist of the post!

Bill

----- Forwarded Message ----

From: Bill klimas <klimas_bill@...>

Kay <kp_mlist@...>

Cc:

Sent: Tue, August 24, 2010 9:38:12 PM

Subject: Re: Imunovir & Dr Goldberg

Kay sorry you can not get posted on the list but I CC'ed the list so

everyone is in the loop. followers read down the post in that Kay and I

have been conversing off list.

No Dr K does not see children but she is an integral part of the protocol we are

on. No Dr Klimas is focused on CFS and Gulf War adults (She works 120+ hours a

week with these folks). She is a board member on the foundation and

brought Imunovir among other aspects of this treatment to the table. Her focus

is on research and does not see children, in in her words " I have no experience

with these meds effects on kids and I will not go there any time soon " . She

can't. Her focus is finding a cure to neuroimmune disorders and right now her

focus is on adults. My son is not her patient, she sent us to Dr G. It is

helpful having a scientist in the family that is focused on my sons illness even

if it is a related illness and I will share what I can.

I will say the she is very excited about the new retrovirus and sits on the

committee that is reviewing the national blood supply for the NIH, in doing so

is very connected with all of the current research. I asked her the time line

and she responded that we will know if this is a root cause in the next 6-9

months. " IF " and this is a VERY big IF, this new family of virus is a root cause

2011 may be a very big year in the world of Autism

I will ask her if any of her associates are focused on this facet of the illness

and see children but do not get excited. When I worked to get this out on the

SCIA (No longer working with them) She told me I would drive parents crazy in

that there is " NO " money for immune research and few Doctors that truly

understand immune and neuroinflammation and Autism. Scientists go where the

dollars are. Look for the WPI and CSF to find us a cure!

Call Autism speaks and give them an ear full, We need their bucks in the correct

sector!

Bill

________________________________

From: Kay <kp_mlist@...>

Bill klimas <klimas_bill@...>

Sent: Tue, August 24, 2010 6:01:27 PM

Subject: Re: Imunovir & Dr Goldberg

Got it. Thanks Bill.

Does she see kids with the Autism label in clinical practice? We live in

Northern CA so is a big trek to goto Florida.

Are there other immunologist perhaps in the west coast that are close to her

research? We asked the folks at Stanford but doesn't look like they buy into the

immune connection just yet.

Thanks,

________________________________

From: Bill klimas <klimas_bill@...>

Kay <kp_mlist@...>

Sent: Tue, August 24, 2010 2:32:00 PM

Subject: Re: Imunovir & Dr Goldberg

Kay

I believe she addresses that. She is not only a clinician and researcher but

also director of the U of M immunology lab. She uses NK cell counts and NK cell

function as a surrogate for cytotoxic T cell function. It is in the immune

panels that she runs. I do know she has ID'ed several markers that she can use

to determine the severity of CSF in her patients but I am not up on those and I

do not believe that any other immunologist is using these markers. Primarily

research driven.

________________________________

From: Kay <kp_mlist@...>

klimas_bill@...

Sent: Tue, August 24, 2010 4:58:24 PM

Subject: Re: Imunovir & Dr Goldberg

Bill, This is interesting to know. My posts don't make it to the board so

am writing off the list.

Are there any biomarkers for low granzyme & perforin content or how do we

ascertain that the cells are poorly functioning?

________________________________

From: Bill klimas <klimas_bill@...>

Sent: Tue, August 24, 2010 1:18:33 PM

Subject: Re: Imunovir & Dr Goldberg

Dr Klimas' explanation of the function of imunovir

In my experience imunovir increases NK cell function by increasing the amount of

granzymes/cell; in effect improving the ability of the cell to kill virally

infected targets. I usually see elevated NK cell numbers when the function is

poor - a compensation for poor function, making increasing number of cells to

do

the job. Its not all bad to have compensatory mechanisms, it is worse when

there is poor function and a low number.

In my research area, Chronic Fatigue Syndrome and Gulf War Illness, NK cell

function is poor because there is a low granzyme and perforin content of the

cell. This is also true of cytotoxic T cells, the other antiviral cell and

possibly the more important of the two - its function is harder to measure, so

we have used NK cell function as a surrogate for cytotoxic T cell function,

after proving that the granzyme and perforin content of both NK and of

Cytotoxic T cells is low.

________________________________

From: Robyn & Greg Coggins <rngcoggs@...>

Sent: Tue, August 24, 2010 3:31:59 PM

Subject: Re: Imunovir & Dr Goldberg

Thanks, Bill.

Robyn

________________________________

From: Bill klimas <klimas_bill@...>

Sent: Tue, August 24, 2010 10:57:34 AM

Subject: Re: Imunovir & Dr Goldberg

Yes according to Dr K. I will bring down high NK . I will drop her a note and

ask her to explain then forward it back to the list.

________________________________

From: Robyn & Greg Coggins <rngcoggs@...>

Sent: Tue, August 24, 2010 1:26:27 PM

Subject: Re: Imunovir & Dr Goldberg

Hi, Bill.

Another question about Imunovir...does it function to normalize NK cells whether

they're high or low?

Thanks!

Robyn

________________________________

From: Bill klimas <klimas_bill@...>

Sent: Tue, August 24, 2010 5:37:44 AM

Subject: Re: Imunovir & Dr Goldberg

Sorry if i was not clear. We are on and have been on Acyclovir continuously for

several years. The Imunovir is not an antiviral in the sense that Valtrex, Famir

or Acyclovir. These three block vital replication. Imunovir is an Immune

modulator that increases NK cell function and counts. In that it supports the

immune systems effectiveness it acts as an antiviral. Dr Klimas explained after

several months on Imunovir the immune system hits a plateau. To get additional

benefit you need to take a hiatus - (Dr K does a one month break after six

months - Dr G does a two week break after three months) and when you restart it

you can boost the immune system another notch..

________________________________

From: " Googahly@... " <Googahly@...>

Sent: Tue, August 24, 2010 12:00:59 AM

Subject: Re: Imunovir & Dr Goldberg

Do you take another antiviral during the hiatus?

Gaylen

In a message dated 8/16/2010 1:49:10 P.M. Central Daylight Time,

klimas_bill@... writes:

yes, We were on a pulse dosage such as yours for six months (Dr Klimas'

recommendation) and the effects hit a plateau. We then took a two month

hiatus

and restarted several months ago with good gains. We do five tablets a day

-

week one and three tables a day - week two, week ends off. Uric acid is

generally slightly high 6.5 +/- on monthly blood work with no negative

side

effects

________________________________

From: Fund <_susan_fund@..._ (mailto:susan_fund@...) >

_ _ (mailto: )

Sent: Mon, August 16, 2010 2:27:48 PM

Subject: Imunovir & Dr Goldberg

My son has been on Imunovir for 6 months w/ some minor gains. My DAN doc

follows

Dr Cheney's dosing schedule for the Imunovir. First week 6 tablets per day

Mon

thru Fri and none on Sat and Sun. The next week It's just 2 tablets Mon

thru Fri

with none on Sat and Sun.You rotate week one and week two for 2 months and

then

take a month off. Dr Cheney says that if you dose it consistently the

Imunovir

will stop working so you need to pulse it and change the dose to trick the

immune system into kicking in.

Does Dr Goldberg recommend changing the dose or keeping a constant dose?

Has

anyone who has used Imunovir consistently found it to stop working?

Thanks!

Link to comment
Share on other sites

I use ibuprofen but pretty seldom. I often see him get agitated after high

stress periods like the first day of school. These kids react much like CFS

folks in that stress can also trigger inflammation. Ibuprofen seems to be

effective at these times. I also direct him to calm him self. He has learned

that his agitation is unhealthy and most times he will take his pill then go to

his room to lie down for an short while (generally in a dark room) and he gets

back up back on base.This strategy came from the days we wold have melt downs.

They are over but stress in particular can trigger near melt episodes.

________________________________

From: Jill Boyer <sjillboyer@...>

Sent: Thu, August 26, 2010 11:12:56 AM

Subject: Re: Fw: Imunovir & Dr Goldberg

Thank you Bill for this. I am waaaaaaay behind on my emails so I am thankful I

did not miss this. Monday was a HUGE day and unfortunately, I had little time to

absorb it all. Oh, I forgot, there is a mother with a 29 year old adult ASD son.

This kid is in bad shape. He does well on Motrin but she does not want to give

it to him very often. I asked her to contact you but I don't remember what you

do to control inflammation. Do not you use aspirn/ibuprofen for your son. I am

thinking about doing this for my son as well. Thank you.

All the best,

Jill

Jill Boyer, 5544 Glasgow Place, Columbus, OH 43235, USA

email: sjillboyer@..., phone: 614-538-8986

From: Bill klimas <klimas_bill@...>

Subject: Fw: Imunovir & Dr Goldberg

mb12 valtrex

Cc:

Date: Tuesday, August 24, 2010, 9:46 PM

I just posted this on the list and I thought some of you would be

interested. Read down the thread to get the gist of the post!

Bill

----- Forwarded Message ----

From: Bill klimas <klimas_bill@...>

Kay <kp_mlist@...>

Cc:

Sent: Tue, August 24, 2010 9:38:12 PM

Subject: Re: Imunovir & Dr Goldberg

Kay sorry you can not get posted on the list but I CC'ed the list so

everyone is in the loop. followers read down the post in that Kay and I

have been conversing off list.

No Dr K does not see children but she is an integral part of the protocol we are

on. No Dr Klimas is focused on CFS and Gulf War adults (She works 120+ hours a

week with these folks). She is a board member on the foundation and

brought Imunovir among other aspects of this treatment to the table. Her focus

is on research and does not see children, in in her words " I have no experience

with these meds effects on kids and I will not go there any time soon " . She

can't. Her focus is finding a cure to neuroimmune disorders and right now her

focus is on adults. My son is not her patient, she sent us to Dr G. It is

helpful having a scientist in the family that is focused on my sons illness even

if it is a related illness and I will share what I can.

I will say the she is very excited about the new retrovirus and sits on the

committee that is reviewing the national blood supply for the NIH, in doing so

is very connected with all of the current research. I asked her the time line

and she responded that we will know if this is a root cause in the next 6-9

months. " IF " and this is a VERY big IF, this new family of virus is a root cause

2011 may be a very big year in the world of Autism

I will ask her if any of her associates are focused on this facet of the illness

and see children but do not get excited. When I worked to get this out on the

SCIA (No longer working with them) She told me I would drive parents crazy in

that there is " NO " money for immune research and few Doctors that truly

understand immune and neuroinflammation and Autism. Scientists go where the

dollars are. Look for the WPI and CSF to find us a cure!

Call Autism speaks and give them an ear full, We need their bucks in the correct

sector!

Bill

________________________________

From: Kay <kp_mlist@...>

Bill klimas <klimas_bill@...>

Sent: Tue, August 24, 2010 6:01:27 PM

Subject: Re: Imunovir & Dr Goldberg

Got it. Thanks Bill.

Does she see kids with the Autism label in clinical practice? We live in

Northern CA so is a big trek to goto Florida.

Are there other immunologist perhaps in the west coast that are close to her

research? We asked the folks at Stanford but doesn't look like they buy into the

immune connection just yet.

Thanks,

________________________________

From: Bill klimas <klimas_bill@...>

Kay <kp_mlist@...>

Sent: Tue, August 24, 2010 2:32:00 PM

Subject: Re: Imunovir & Dr Goldberg

Kay

I believe she addresses that. She is not only a clinician and researcher but

also director of the U of M immunology lab. She uses NK cell counts and NK cell

function as a surrogate for cytotoxic T cell function. It is in the immune

panels that she runs. I do know she has ID'ed several markers that she can use

to determine the severity of CSF in her patients but I am not up on those and I

do not believe that any other immunologist is using these markers. Primarily

research driven.

________________________________

From: Kay <kp_mlist@...>

klimas_bill@...

Sent: Tue, August 24, 2010 4:58:24 PM

Subject: Re: Imunovir & Dr Goldberg

Bill, This is interesting to know. My posts don't make it to the board so

am writing off the list.

Are there any biomarkers for low granzyme & perforin content or how do we

ascertain that the cells are poorly functioning?

________________________________

From: Bill klimas <klimas_bill@...>

Sent: Tue, August 24, 2010 1:18:33 PM

Subject: Re: Imunovir & Dr Goldberg

Dr Klimas' explanation of the function of imunovir

In my experience imunovir increases NK cell function by increasing the amount of

granzymes/cell; in effect improving the ability of the cell to kill virally

infected targets. I usually see elevated NK cell numbers when the function is

poor - a compensation for poor function, making increasing number of cells to

do

the job. Its not all bad to have compensatory mechanisms, it is worse when

there is poor function and a low number.

In my research area, Chronic Fatigue Syndrome and Gulf War Illness, NK cell

function is poor because there is a low granzyme and perforin content of the

cell. This is also true of cytotoxic T cells, the other antiviral cell and

possibly the more important of the two - its function is harder to measure, so

we have used NK cell function as a surrogate for cytotoxic T cell function,

after proving that the granzyme and perforin content of both NK and of

Cytotoxic T cells is low.

________________________________

From: Robyn & Greg Coggins <rngcoggs@...>

Sent: Tue, August 24, 2010 3:31:59 PM

Subject: Re: Imunovir & Dr Goldberg

Thanks, Bill.

Robyn

________________________________

From: Bill klimas <klimas_bill@...>

Sent: Tue, August 24, 2010 10:57:34 AM

Subject: Re: Imunovir & Dr Goldberg

Yes according to Dr K. I will bring down high NK . I will drop her a note and

ask her to explain then forward it back to the list.

________________________________

From: Robyn & Greg Coggins <rngcoggs@...>

Sent: Tue, August 24, 2010 1:26:27 PM

Subject: Re: Imunovir & Dr Goldberg

Hi, Bill.

Another question about Imunovir...does it function to normalize NK cells whether

they're high or low?

Thanks!

Robyn

________________________________

From: Bill klimas <klimas_bill@...>

Sent: Tue, August 24, 2010 5:37:44 AM

Subject: Re: Imunovir & Dr Goldberg

Sorry if i was not clear. We are on and have been on Acyclovir continuously for

several years. The Imunovir is not an antiviral in the sense that Valtrex, Famir

or Acyclovir. These three block vital replication. Imunovir is an Immune

modulator that increases NK cell function and counts. In that it supports the

immune systems effectiveness it acts as an antiviral. Dr Klimas explained after

several months on Imunovir the immune system hits a plateau. To get additional

benefit you need to take a hiatus - (Dr K does a one month break after six

months - Dr G does a two week break after three months) and when you restart it

you can boost the immune system another notch..

________________________________

From: " Googahly@... " <Googahly@...>

Sent: Tue, August 24, 2010 12:00:59 AM

Subject: Re: Imunovir & Dr Goldberg

Do you take another antiviral during the hiatus?

Gaylen

In a message dated 8/16/2010 1:49:10 P.M. Central Daylight Time,

klimas_bill@... writes:

yes, We were on a pulse dosage such as yours for six months (Dr Klimas'

recommendation) and the effects hit a plateau. We then took a two month

hiatus

and restarted several months ago with good gains. We do five tablets a day

-

week one and three tables a day - week two, week ends off. Uric acid is

generally slightly high 6.5 +/- on monthly blood work with no negative

side

effects

________________________________

From: Fund <_susan_fund@..._ (mailto:susan_fund@...) >

_ _ (mailto: )

Sent: Mon, August 16, 2010 2:27:48 PM

Subject: Imunovir & Dr Goldberg

My son has been on Imunovir for 6 months w/ some minor gains. My DAN doc

follows

Dr Cheney's dosing schedule for the Imunovir. First week 6 tablets per day

Mon

thru Fri and none on Sat and Sun. The next week It's just 2 tablets Mon

thru Fri

with none on Sat and Sun.You rotate week one and week two for 2 months and

then

take a month off. Dr Cheney says that if you dose it consistently the

Imunovir

will stop working so you need to pulse it and change the dose to trick the

immune system into kicking in.

Does Dr Goldberg recommend changing the dose or keeping a constant dose?

Has

anyone who has used Imunovir consistently found it to stop working?

Thanks!

Link to comment
Share on other sites

Moderator

I forwarded this by mistake as well so please kill the thread.

Bill K

________________________________

From: Bill klimas <klimas_bill@...>

Sent: Thu, August 26, 2010 11:40:30 AM

Subject: Re: Fw: Imunovir & Dr Goldberg

I use ibuprofen but pretty seldom. I often see him get agitated after high

stress periods like the first day of school. These kids react much like CFS

folks in that stress can also trigger inflammation. Ibuprofen seems to be

effective at these times. I also direct him to calm him self. He has learned

that his agitation is unhealthy and most times he will take his pill then go to

his room to lie down for an short while (generally in a dark room) and he gets

back up back on base.This strategy came from the days we wold have melt downs.

They are over but stress in particular can trigger near melt episodes.

________________________________

From: Jill Boyer <sjillboyer@...>

Sent: Thu, August 26, 2010 11:12:56 AM

Subject: Re: Fw: Imunovir & Dr Goldberg

Thank you Bill for this. I am waaaaaaay behind on my emails so I am thankful I

did not miss this. Monday was a HUGE day and unfortunately, I had little time to

absorb it all. Oh, I forgot, there is a mother with a 29 year old adult ASD son.

This kid is in bad shape. He does well on Motrin but she does not want to give

it to him very often. I asked her to contact you but I don't remember what you

do to control inflammation. Do not you use aspirn/ibuprofen for your son. I am

thinking about doing this for my son as well. Thank you.

All the best,

Jill

Jill Boyer, 5544 Glasgow Place, Columbus, OH 43235, USA

email: sjillboyer@..., phone: 614-538-8986

From: Bill klimas <klimas_bill@...>

Subject: Fw: Imunovir & Dr Goldberg

mb12 valtrex

Cc:

Date: Tuesday, August 24, 2010, 9:46 PM

I just posted this on the list and I thought some of you would be

interested. Read down the thread to get the gist of the post!

Bill

----- Forwarded Message ----

From: Bill klimas <klimas_bill@...>

Kay <kp_mlist@...>

Cc:

Sent: Tue, August 24, 2010 9:38:12 PM

Subject: Re: Imunovir & Dr Goldberg

Kay sorry you can not get posted on the list but I CC'ed the list so

everyone is in the loop. followers read down the post in that Kay and I

have been conversing off list.

No Dr K does not see children but she is an integral part of the protocol we are

on. No Dr Klimas is focused on CFS and Gulf War adults (She works 120+ hours a

week with these folks). She is a board member on the foundation and

brought Imunovir among other aspects of this treatment to the table. Her focus

is on research and does not see children, in in her words " I have no experience

with these meds effects on kids and I will not go there any time soon " . She

can't. Her focus is finding a cure to neuroimmune disorders and right now her

focus is on adults. My son is not her patient, she sent us to Dr G. It is

helpful having a scientist in the family that is focused on my sons illness even

if it is a related illness and I will share what I can.

I will say the she is very excited about the new retrovirus and sits on the

committee that is reviewing the national blood supply for the NIH, in doing so

is very connected with all of the current research. I asked her the time line

and she responded that we will know if this is a root cause in the next 6-9

months. " IF " and this is a VERY big IF, this new family of virus is a root cause

2011 may be a very big year in the world of Autism

I will ask her if any of her associates are focused on this facet of the illness

and see children but do not get excited. When I worked to get this out on the

SCIA (No longer working with them) She told me I would drive parents crazy in

that there is " NO " money for immune research and few Doctors that truly

understand immune and neuroinflammation and Autism. Scientists go where the

dollars are. Look for the WPI and CSF to find us a cure!

Call Autism speaks and give them an ear full, We need their bucks in the correct

sector!

Bill

________________________________

From: Kay <kp_mlist@...>

Bill klimas <klimas_bill@...>

Sent: Tue, August 24, 2010 6:01:27 PM

Subject: Re: Imunovir & Dr Goldberg

Got it. Thanks Bill.

Does she see kids with the Autism label in clinical practice? We live in

Northern CA so is a big trek to goto Florida.

Are there other immunologist perhaps in the west coast that are close to her

research? We asked the folks at Stanford but doesn't look like they buy into the

immune connection just yet.

Thanks,

________________________________

From: Bill klimas <klimas_bill@...>

Kay <kp_mlist@...>

Sent: Tue, August 24, 2010 2:32:00 PM

Subject: Re: Imunovir & Dr Goldberg

Kay

I believe she addresses that. She is not only a clinician and researcher but

also director of the U of M immunology lab. She uses NK cell counts and NK cell

function as a surrogate for cytotoxic T cell function. It is in the immune

panels that she runs. I do know she has ID'ed several markers that she can use

to determine the severity of CSF in her patients but I am not up on those and I

do not believe that any other immunologist is using these markers. Primarily

research driven.

________________________________

From: Kay <kp_mlist@...>

klimas_bill@...

Sent: Tue, August 24, 2010 4:58:24 PM

Subject: Re: Imunovir & Dr Goldberg

Bill, This is interesting to know. My posts don't make it to the board so

am writing off the list.

Are there any biomarkers for low granzyme & perforin content or how do we

ascertain that the cells are poorly functioning?

________________________________

From: Bill klimas <klimas_bill@...>

Sent: Tue, August 24, 2010 1:18:33 PM

Subject: Re: Imunovir & Dr Goldberg

Dr Klimas' explanation of the function of imunovir

In my experience imunovir increases NK cell function by increasing the amount of

granzymes/cell; in effect improving the ability of the cell to kill virally

infected targets. I usually see elevated NK cell numbers when the function is

poor - a compensation for poor function, making increasing number of cells to

do

the job. Its not all bad to have compensatory mechanisms, it is worse when

there is poor function and a low number.

In my research area, Chronic Fatigue Syndrome and Gulf War Illness, NK cell

function is poor because there is a low granzyme and perforin content of the

cell. This is also true of cytotoxic T cells, the other antiviral cell and

possibly the more important of the two - its function is harder to measure, so

we have used NK cell function as a surrogate for cytotoxic T cell function,

after proving that the granzyme and perforin content of both NK and of

Cytotoxic T cells is low.

________________________________

From: Robyn & Greg Coggins <rngcoggs@...>

Sent: Tue, August 24, 2010 3:31:59 PM

Subject: Re: Imunovir & Dr Goldberg

Thanks, Bill.

Robyn

________________________________

From: Bill klimas <klimas_bill@...>

Sent: Tue, August 24, 2010 10:57:34 AM

Subject: Re: Imunovir & Dr Goldberg

Yes according to Dr K. I will bring down high NK . I will drop her a note and

ask her to explain then forward it back to the list.

________________________________

From: Robyn & Greg Coggins <rngcoggs@...>

Sent: Tue, August 24, 2010 1:26:27 PM

Subject: Re: Imunovir & Dr Goldberg

Hi, Bill.

Another question about Imunovir...does it function to normalize NK cells whether

they're high or low?

Thanks!

Robyn

________________________________

From: Bill klimas <klimas_bill@...>

Sent: Tue, August 24, 2010 5:37:44 AM

Subject: Re: Imunovir & Dr Goldberg

Sorry if i was not clear. We are on and have been on Acyclovir continuously for

several years. The Imunovir is not an antiviral in the sense that Valtrex, Famir

or Acyclovir. These three block vital replication. Imunovir is an Immune

modulator that increases NK cell function and counts. In that it supports the

immune systems effectiveness it acts as an antiviral. Dr Klimas explained after

several months on Imunovir the immune system hits a plateau. To get additional

benefit you need to take a hiatus - (Dr K does a one month break after six

months - Dr G does a two week break after three months) and when you restart it

you can boost the immune system another notch..

________________________________

From: " Googahly@... " <Googahly@...>

Sent: Tue, August 24, 2010 12:00:59 AM

Subject: Re: Imunovir & Dr Goldberg

Do you take another antiviral during the hiatus?

Gaylen

In a message dated 8/16/2010 1:49:10 P.M. Central Daylight Time,

klimas_bill@... writes:

yes, We were on a pulse dosage such as yours for six months (Dr Klimas'

recommendation) and the effects hit a plateau. We then took a two month

hiatus

and restarted several months ago with good gains. We do five tablets a day

-

week one and three tables a day - week two, week ends off. Uric acid is

generally slightly high 6.5 +/- on monthly blood work with no negative

side

effects

________________________________

From: Fund <_susan_fund@..._ (mailto:susan_fund@...) >

_ _ (mailto: )

Sent: Mon, August 16, 2010 2:27:48 PM

Subject: Imunovir & Dr Goldberg

My son has been on Imunovir for 6 months w/ some minor gains. My DAN doc

follows

Dr Cheney's dosing schedule for the Imunovir. First week 6 tablets per day

Mon

thru Fri and none on Sat and Sun. The next week It's just 2 tablets Mon

thru Fri

with none on Sat and Sun.You rotate week one and week two for 2 months and

then

take a month off. Dr Cheney says that if you dose it consistently the

Imunovir

will stop working so you need to pulse it and change the dose to trick the

immune system into kicking in.

Does Dr Goldberg recommend changing the dose or keeping a constant dose?

Has

anyone who has used Imunovir consistently found it to stop working?

Thanks!

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
×
  • Create New...