Re: Re: A gentle reminder/immune modulators

June 10, 2006

Will the immune modulators replace the current treatment or just be added

to it?

-

meljackmom <meljackmom@...> wrote:

The immune modulators do exist. They are compounds that were

discovered in labs years ago. That makes it difficult for a pharma

company to obtain any patent rights to protect their investment.

It costs about $1 billion to bring a drug to market today. That

includes a Phase 1 trial to check for safety in human beings, Phase

2 to see if it actually effective at treating a problem or disease,

Phase 3 which expands the number of patients in the trial to a wide

population. This all has to be done in kids in order for it to

become an approved treatment for immune regulation or CFS.

Dr Goldberg and Dr Galpin continue to work very hard to find the

right type of funding/company to take this on.

> > > What I don't understand is all the secrecy...do

> > > these immune modulators actually exist at this point

> > > in time and they just need to be tested, or is it a

> > > theory which will hopefully be converted into an

> > > effective med someday? If it exists, does it have a

> > > name? If it has a name, why can't we at least be

> > > told what the name is?

> > >

> > > Not meaning to sound negative here...just a tired

> > > old mom wanting more info....

> > > Heidi

> > >

> >

> > __________________________________________________

> >

June 11, 2006

What immune modulators are you talking about?

I have friends whose children take immune modulators.

they are not compounds. They are on the market.

My daughter was almost put on one (6mp). There

are babies on immune modulators. And they've been

around and approved for use with children for a long

time now. At least 10 years....

On Jun 10, 2006, at 6:06 PM, meljackmom wrote:

> The immune modulators do exist. They are compounds that were

> discovered in labs years ago. That makes it difficult for a pharma

> company to obtain any patent rights to protect their investment.

>

> It costs about $1 billion to bring a drug to market today. That

> includes a Phase 1 trial to check for safety in human beings, Phase

> 2 to see if it actually effective at treating a problem or disease,

> Phase 3 which expands the number of patients in the trial to a wide

> population. This all has to be done in kids in order for it to

> become an approved treatment for immune regulation or CFS.

>

> Dr Goldberg and Dr Galpin continue to work very hard to find the

> right type of funding/company to take this on.

>

>>> They would have a name, but we are not privy to that

>>> info - couldn't tell you why other than to speculate

>>> that it wouldn't be right to release a name without

>>> any backing that this would be helpful. I don't know

>>> if it's (the name) released in the CFS world or not

>>> either - that is, if my memory and understanding even

>>> serve me correctly in the first place. I hate to even

>>> say it in case I'm incorrect.

>>>

>>> HTH-

>>>

June 11, 2006

Firstly,

The immune modulators and the one that Dr Goldberg and Dr Galpin have

targeted for trials are in fact compounds like most medicines. It is yet to

be trialed in children in adults. There are many other meds around that have

immune modulating properties. One for example is Immunovir (Isoprinosine)

that is made in Ireland by Newport Pharmaceuticals is an older one and

licensed and approved in 25 or so countries (not the USA currently). It has

been used for CFDS and in ASD cases.. (Dr Byron Hyde in Canada has published

work on this - do a search on that and you will read a lot of interesting

information. Some Dr's treating ASD in the US have recommended it though

getting the med through the post may have been a bit hit and miss! It is now

the subject of trials for the US I believe.

To answer your question , from what Dr Goldberg has told me in patient

visits and consultations, the immune modulatar that he want's to use is

likely to become a primary medicine in treatment. The use of other medicines

like anti-fungals, anti-virals will depend on indications in the patient's

bloodwork. The use of SSRi's etc will also depend on the treatment outcomes

as the brain returns to health. A lot of the questions about how much will

be replaced will be answered in the trials - where detailed bloodwork

profiling of patients will be done prior to ensure a diverse and deep sample

for cross tabulation and evaluation. The tools in the treatment regimen will

be strengthened with this medicine that is capable of switching the immune

system back to normal state - how the current tools he uses will be used to

support this will depend on each case.

Hope this helps,

_____

From: [mailto: ] On Behalf Of Rob or

Sunseri

Sent: Sunday, June 11, 2006 11:26 AM

Subject: Re: Re: A gentle reminder/immune modulators

Will the immune modulators replace the current treatment or just be

added to it?

-

meljackmom <meljackmom (DOT) <mailto:meljackmom%40> com> wrote: