GcMAF

[Guest guest]

I was almost dead after 20 yrs of CFS. after just 10 injections of GcMAF and

hepapressin, i am feeling better and out of bed most days. i sometimes have

energy surges too. right now, i feel like this might help me get my life back

one day.

[Guest guest]

I am about to start GcMAF injections. I would appreciate feedback from anyone

who has tried it. How long did you take it to see an effect? How much did you

take? Side effects? It's expensive, so I'd like to know what I'm getting into.

 

a in Western Mass

[Guest guest]

Sue,

Have you not had any experience of die-off or exacerbation? GcMAF sounded like

it could really worsen one's condition for a while, which scares the hell out of

me, because I can't afford to get any worse. Been there done that, too many

times already.

Thanks,

Ellen

Re: GcMAF

I was almost dead after 20 yrs of CFS. after just 10 injections of GcMAF and

hepapressin, i am feeling better and out of bed most days. i sometimes have

energy surges too. right now, i feel like this might help me get my life back

one day.

[Guest guest]

good to hear. what is your source of GcMaf?

Thanks.

[Guest guest]

I have done GcMAF and MAF314. The initial goal is too lower your Nagalase if it

is raised to below 1. I am very sick but only had a brief period of heightened

immune reaction at first.

I then improved dramatically for about 6 weeks. Pain was mostly gone. OI

improved. Huge jump in energy. It was amazing!

As my Nagalase got toward 1 and then below I started to regress. This was last

September. I still have not returned to baseline but I am close.

The bad thing for some people, including myself, is that now my Vitamin D

metabolism is out of whack, and if I spend too much time in the sun (maybe 15

minutes every other day for a couple of weeks) I am at risk for Vit D toxicity,

specifically Calcitriol the hormonal component of Vitamin D.Vitamin D toxicity

can lead to renal failure.

This is quite disaapointing as I look forward to the summmers and Vitamin D from

sunlight has always helped me.

Be careful and find the right doc for this. I believe Dr. DeMelier in Belgum

knows the most about this and is the most careful. Dr. Englander may be good as

well.

>

> I am about to start GcMAF injections. I would appreciate feedback from anyone

who has tried it. How long did you take it to see an effect? How much did you

take? Side effects? It's expensive, so I'd like to know what I'm getting into.

>  

> a in Western Mass

>

>

[Guest guest]

scott may i ask how much gcmaf you took and what your source was? i think you

told me before but i am still foggy...

 

thanks!

________________________________

From: scott <scott_45242@...>

Sent: Monday, May 14, 2012 10:44:52 AM

Subject: Re: GcMAF

 

I have done GcMAF and MAF314. The initial goal is too lower your Nagalase if it

is raised to below 1. I am very sick but only had a brief period of heightened

immune reaction at first.

I then improved dramatically for about 6 weeks. Pain was mostly gone. OI

improved. Huge jump in energy. It was amazing!

As my Nagalase got toward 1 and then below I started to regress. This was last

September. I still have not returned to baseline but I am close.

The bad thing for some people, including myself, is that now my Vitamin D

metabolism is out of whack, and if I spend too much time in the sun (maybe 15

minutes every other day for a couple of weeks) I am at risk for Vit D toxicity,

specifically Calcitriol the hormonal component of Vitamin D.Vitamin D toxicity

can lead to renal failure.

This is quite disaapointing as I look forward to the summmers and Vitamin D from

sunlight has always helped me.

Be careful and find the right doc for this. I believe Dr. DeMelier in Belgum

knows the most about this and is the most careful. Dr. Englander may be good as

well.

>

> I am about to start GcMAF injections. I would appreciate feedback from anyone

who has tried it. How long did you take it to see an effect? How much did you

take? Side effects? It's expensive, so I'd like to know what I'm getting into.

>  

> a in Western Mass

>

>

[Guest guest]

{Moderator: please trim posts.}

Hi ,

Where did you get your GcMAF? How much did you take per shot? Did the lab in NJ

do your nagalase testing? Did you take high doses of vitamin D before starting?

My doctor is following the Cheney protocol (10,000 mg of vitamin D/day for a

month before beginning the GcMAF and then none during.) Who is the right doctor

for this? (I am currently a patient of Barry Elson's, but was fomerly a patient

of both Enlander and Cheney.)

 

a

________________________________

From: scott <scott_45242@...>

Sent: Monday, May 14, 2012 10:44 AM

Subject: Re: GcMAF

I have done GcMAF and MAF314.  The initial goal is too lower your Nagalase if it

is raised to below 1.  I am very sick but only had a brief period of heightened

immune reaction at first.

I then improved dramatically for about 6 weeks.  Pain was mostly gone. OI

improved.  Huge jump in energy. It was amazing!

[Guest guest]

Sue,

I started @ 20 ngs for a onth and then slowly worked up to 100 ngs. Then I took

MAF-314 which was supposedly 100 times more bioactive but would have fewer side

effects. I believe this si what got me in trouble but have no direct evidence.

I was only on MAF-314 for about 3 weeks.

Hope this helps.

-

> >

> > I am about to start GcMAF injections. I would appreciate feedback from

anyone who has tried it. How long did you take it to see an effect? How much did

you take? Side effects? It's expensive, so I'd like to know what I'm getting

into.

> >  

> > a in Western Mass

> >

> >

[Guest guest]

{Moderator: Please trim posts}

a,

When I worked with Cheney on this he said it was a big mistake to raise Vit D

levels before starting. He indicated data out of Europe sugggested that. Maybe

that thinking has changed. I never supplemented with Vitamin D, but as I felt

better I got a lot of sunlight, probably too much.

After studying this and seeing presentations I believe Dr. deMelier is the best

and most experienced. Obviously this is just an educated guess. I believe he

may be advising Dr. Enlander as well, and they probably have all learned a lot

from each other's experience.

I also appears that Dr. Cheney and Dr. DeMelier have great respect for each

other but different apporaches. Hope this helps.

-

---

[Guest guest]

Is it absolutely necessary to take so much vitamin D when doing GcMAF? Are other

doctors doing it differently? The risk of messing up your vitamin D metabolism

seems like a pretty dire side effect.

Thanks,

Ellen

Hi ,

Where did you get your GcMAF? How much did you take per shot? Did the lab in

NJ do your nagalase testing? Did you take high doses of vitamin D before

starting? My doctor is following the Cheney protocol (10,000 mg of vitamin D/day

for a month before beginning the GcMAF and then none during.) Who is the right

doctor for this? (I am currently a patient of Barry Elson's, but was fomerly a

patient of both Enlander and Cheney.)

a

[Guest guest]

i think many CFS patients have low 25 hydroxyvitamin D but high 1,25

dehydroxyvitamin D so it is my understanding that supplementation is not

necessary. dr. enlander talks to dr. demeirleir regularly. i believe they use

similar approaches. dr. demeirleir does a lot of gut bacteria testing but i am

not sure if dr. enlander does this.

 

the current thinking is to start at a very low dose and very slowly (over

several months?), titrate upwards.

 

xoxo

________________________________

From: ellen <variegatedfoliage@...>

Sent: Tuesday, May 15, 2012 10:51:49 AM

Subject: Re: Re: GcMAF

 

Is it absolutely necessary to take so much vitamin D when doing GcMAF? Are other

doctors doing it differently? The risk of messing up your vitamin D metabolism

seems like a pretty dire side effect.

Thanks,

Ellen

Hi ,

Where did you get your GcMAF? How much did you take per shot? Did the lab in NJ

do your nagalase testing? Did you take high doses of vitamin D before starting?

My doctor is following the Cheney protocol (10,000 mg of vitamin D/day for a

month before beginning the GcMAF and then none during.) Who is the right doctor

for this? (I am currently a patient of Barry Elson's, but was fomerly a patient

of both Enlander and Cheney.)

a

[Guest guest]

Hi , thanks for the info. Are you planning on trying GcMAF again, perhaps

once this vitamin D issue settles down? I hear many norwegian patients are doing

very well on it too...

[Guest guest]

Sue,

Do you mean a low dose of GcMAF or vitamin D?

Thanks,

Ellen

the current thinking is to start at a very low dose and very slowly (over

several months?), titrate upwards.

xoxo

[Guest guest]

low dose of gcmaf

________________________________

From: ellen <variegatedfoliage@...>

Sent: Tuesday, May 15, 2012 5:57:17 PM

Subject: Re: Re: GcMAF

 

Sue,

Do you mean a low dose of GcMAF or vitamin D?

Thanks,

Ellen

the current thinking is to start at a very low dose and very slowly (over

several months?), titrate upwards.

xoxo

[Guest guest]

No I do not as I believe it will drive my Calcitriol into toxic ranges.

I may be the wrong person for this therapy as many others may do very well on

it. This is kind of how this disease works.

Also, my impaired Vitamind D metabolism may be for life - we just do not know

yet.

>

> Hi , thanks for the info. Are you planning on trying GcMAF again, perhaps

once this vitamin D issue settles down? I hear many norwegian patients are doing

very well on it too...

>

[Guest guest]

I have tried several immune modulators and I have had the same experience every

time: a quick, positive response ( more energy, less pain) that lasted for

several weeks, followed by a gradual loss of response down to original baseline.

Going off whatever I was on and coming back to it weeks or months later never

again succeeded in producing the same benefit. From what I've read, this is not

an uncommon situation for someone with CFS. I'm wondering if GcMAF is any

different.

Ellen

[Guest guest]

.. by calcitrol, do you mean calcium?

________________________________

From: scott <scott_45242@...>

Sent: Wednesday, May 16, 2012 11:48:57 AM

Subject: Re: GcMAF

 

No I do not as I believe it will drive my Calcitriol into toxic ranges.

I may be the wrong person for this therapy as many others may do very well on

it. This is kind of how this disease works.

Also, my impaired Vitamind D metabolism may be for life - we just do not know

yet.

>

> Hi , thanks for the info. Are you planning on trying GcMAF again, perhaps

once this vitamin D issue settles down? I hear many norwegian patients are doing

very well on it too...

>

[Guest guest]

Hi Ellen.....things have never worked long term for me either....antivirals

seemed to help a little for a while..as did Nexavir, HIV meds, etc etc. I guess

time will tell whether GcMAF will help long term. The short term response has

been encouraging, and several stories are encouraging too...but you are right,

we cannot really count on anything with this disease.:-/

________________________________

From: ellen <variegatedfoliage@...>

Sent: Wednesday, May 16, 2012 3:48:19 PM

Subject: Re: Re: GcMAF

 

I have tried several immune modulators and I have had the same experience every

time: a quick, positive response ( more energy, less pain) that lasted for

several weeks, followed by a gradual loss of response down to original baseline.

Going off whatever I was on and coming back to it weeks or months later never

again succeeded in producing the same benefit. From what I've read, this is not

an uncommon situation for someone with CFS. I'm wondering if GcMAF is any

different.

Ellen

[Guest guest]

hi mira. dr. demeirleir pioneered the use of gcmaf for CFS. he is having a lot

of success. dr. jeff bradstreet is having a lot of success in autism too. dr.

enlander in NYC is also using it..thats where i got it from. i know of several

people who have recovered or near-recovered on it. i have been on it 3 1/2

months but i still have a long way to go, having been sick 20 yrs.

 

it is an injection you usually give yourself. you dont need a prescription to

get it....you can order it yourself if you want. it has helped me.

 

dr. cheney has also been using it but his protocol is different from the others.

 

the protocol is basically to start at a very low dose and slowly work your way

up, if you can handle it. demeirleir gives nexavir with it and enlander gives

hepapressin.

________________________________

From: Mira Ghoshal <mirasghoshal@...>

Sent: Monday, May 21, 2012 4:08:21 PM

Subject: GcMaf

 

Dear Group,

How many of your are on GcMaf? Are any of you feeling better? Who recommended

that you get on the GcMaf? How long is the treatment? Are people going to be on

this for the rest of their lives? Are they pills or injections? Which method

works better?

Please write back if you have any experience with this drug. I may be able to

get it here in Poland through off label use. I would need to have documentation

for my doctor in how this used, along with any warnings that can go with any

medication. Does someone have a printable treatment protocol for GcMaf?

Mira

[Guest guest]

{Mira - I need you to please trim your posts - you do not need to leave the 4 or

5 previous replies - just the last one or the pertinent line.}

Dear ,

If I order the GCMaf myself how much does it cost let's say per month? Where do

I order it from?

Since you have been on it for 3 1/2 month after being ill for 20 years, do you

feel better? On a scale from 0 to 10 with ten being for feeling healthy and

energetic, where are you now as opposed to where you were before you started to

take it. For an example, you were at a 4 and now you close to being a 6.

Remember that 0 would be that you are bed bound and 10 that you are healthy and

able to work.

This is very important to me because I would like to try taking it myself as

soon as possible. I am going to write the staff of Dr. Enlander's office right

now and ask them about it.

Thank you so much for writing back so quickly!

Mira

From: suebackagain123@...

Date: Mon, 21 May 2012 21:55:13 -0700

Subject: Re: GcMaf

hi mira. dr. demeirleir pioneered the use of gcmaf for CFS. he is having a

lot of success. dr. jeff bradstreet is having a lot of success in autism too.

dr. enlander in NYC is also using it..thats where i got it from. i know of

several people who have recovered or near-recovered on it. i have been on it 3

1/2 months but i still have a long way to go, having been sick 20 yrs.

[Guest guest]

Hi Mira ( hello to a fellow indian!)

 

The cost depends on where you get it from. Dr. Enlander charges about $270 a

vial I think....but 1 vial contains 100 ng and you might take only 10 or 15 ng

for a long time. It lasts for a year in the freezer. I bought 18 vials but I

think I should have bought less.

 

Dr. DeMeirleir in Belgium charges less...maybe 1/2 of that. You can also order

it from GcMAF.eu or BGLI ...there might be some other sources too...there is a

new source in Japan...a very expensive version in Israel, etc. There are also

some yogurts you can learn to make...its all too complicated for me lol

 

I would say I was at a " 1 " on the scale - almost dead. Now, I am maybe a 3. The

last 10 days I notice a stopping in improvement so that has me worried. 2 weeks

ago, I was sure I was recovering very nicely. We will see.

 

For very sick people who have been sick a long, long time, it can take several

months to notice anything.

 

Here is Dr. Enlander's info:

 

860 5th Avenue New York, NY 10065, United States

(212) 794-2000

 

 

 

xoxoxoxo

________________________________

From: Mira Ghoshal <mirasghoshal@...>

Sent: Tuesday, May 22, 2012 8:40:48 AM

Subject: RE: GcMaf

 

{Mira - I need you to please trim your posts - you do not need to leave the 4 or

5 previous replies - just the last one or the pertinent line.}

Dear ,

If I order the GCMaf myself how much does it cost let's say per month? Where do

I order it from?

[Guest guest]

What leve of " recovered " ?? I am 95% recovered, yearning for that last 5%.

God bless,

Sara

>

> hi mira. dr. demeirleir pioneered the use of gcmaf for CFS. he is having a lot

of success. dr. jeff bradstreet is having a lot of success in autism too. dr.

enlander in NYC is also using it..thats where i got it from. i know of several

people who have recovered or near-recovered on it. i have been on it 3 1/2

months but i still have a long way to go, having been sick 20 yrs.

>  

> it is an injection you usually give yourself. you dont need a prescription to

get it....you can order it yourself if you want. it has helped me.

>  

> dr. cheney has also been using it but his protocol is different from the

others.

>  

> the protocol is basically to start at a very low dose and slowly work your way

up, if you can handle it. demeirleir gives nexavir with it and enlander gives

hepapressin.

[Guest guest]

wow! how did u get to 95%!??

 

 

________________________________

From: grammie2304 <sarawilliams.williams@...>

Sent: Tuesday, May 22, 2012 12:28:35 PM

Subject: Re: GcMaf

 

What leve of " recovered " ?? I am 95% recovered, yearning for that last 5%.

God bless,

Sara

>

> hi mira. dr. demeirleir pioneered the use of gcmaf for CFS. he is having a lot

of success. dr. jeff bradstreet is having a lot of success in autism too. dr.

enlander in NYC is also using it..thats where i got it from. i know of several

people who have recovered or near-recovered on it. i have been on it 3 1/2

months but i still have a long way to go, having been sick 20 yrs.

>  

> it is an injection you usually give yourself. you dont need a prescription to

get it....you can order it yourself if you want. it has helped me.

>  

> dr. cheney has also been using it but his protocol is different from the

others.

>  

> the protocol is basically to start at a very low dose and slowly work your way

up, if you can handle it. demeirleir gives nexavir with it and enlander gives

hepapressin.

[Guest guest]

I, like many others, am functioning at 10% (some I know function almost near 0

%), 95% functioning would be beyond fantastic. I appreciate we all want to be

fully well but 95% is a pretty good level, do enjoy it. I hope that doesn't come

across as rude as not meant to be...may I ask how you were at your worse?

bel

Sent from my iPhone

On 22 May 2012, at 17:28, " grammie2304 " <sarawilliams.williams@...> wrote:

> What leve of " recovered " ?? I am 95% recovered, yearning for that last 5%.

>

> God bless,

> Sara

>

>

> >

> > hi mira. dr. demeirleir pioneered the use of gcmaf for CFS. he is having a

lot of success. dr. jeff bradstreet is having a lot of success in autism too.

dr. enlander in NYC is also using it..thats where i got it from. i know of

several people who have recovered or near-recovered on it. i have been on it 3

1/2 months but i still have a long way to go, having been sick 20 yrs.

> > Â

> > it is an injection you usually give yourself. you dont need a prescription

to get it....you can order it yourself if you want. it has helped me.

> > Â

> > dr. cheney has also been using it but his protocol is different from the

others.

> > Â

> > the protocol is basically to start at a very low dose and slowly work your

way up, if you can handle it. demeirleir gives nexavir with it and enlander

gives hepapressin.

>

[Guest guest]

Dear Sara,

Since you are at 95% recovered are you able to go back to work? How long were

you ill before you took the GcMaf and how did you have to be on it? Did you have

any side effects while you were on the medication? How did you get the

medication?

I am trying to find out if I should try to get on this medication and also if I

am a good candidate for it to begin with. I found out from Dr. Enlander's office

that the whole course of treatment costs $5000 because it is not still in the

experimental stage. I have been a patient of his for the past 15 years and he

has helped me a lot in the past.

Mira