GcMAF trial

patient.journey

patient.journey

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I will start my gcmaf treatment in a month once i finish some tests and the doctor get the gcmaf bottles from europe ,, he said that he would start me at ,2 dose as he saw it the best with autism patients,,

Now I need your help as he didn't treat any cfs patient before ,,

The treatment is for 16 weeks is that the normal period ?

The dose patients takes is how much and is it once a week like the doctor say ?

I will be taking Valcyte while am on GcMAF is that fine ?

The doctor told me that I or any nurse could give the injection for me does is work like that with other doctors protocol ?

What side effects I would have and when are the starting after begging the treatment ?

Thanks guys but I really need your help as always
 
Sushi

Sushi

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Omar88 said:
I will start my gcmaf treatment in a month once i finish some tests and the doctor get the gcmaf bottles from europe ,, he said that he would start me at ,2 dose as he saw it the best with autism patients,,

Now I need your help as he didn't treat any cfs patient before. The treatment is for 16 weeks is that the normal period ? The dose patients takes is how much and is it once a week like the doctor say ?

I will be taking Valcyte while am on GcMAF is that fine ?

The doctor told me that I or any nurse could give the injection for me does is work like that with other doctors protocol ? What side effects I would have and when are the starting after begging the treatment ?

Thanks guys but I really need your help as always
Click to expand...
Great you will get to try GcMAF. When you say he will start you at a "2 dose" what does that mean? 2 nanograms, .2 ml, 2 ml? The dose is very important. Also, what is his source of GcMAF as different sources prepare it with different dilution strengths?

16 weeks would not be long enough for an ME/CFS patient. I and others have taken it for over 2 years. At 16 weeks you might start to notice an effect though. You inject once a week at the dose you and your doctor decides is right for you. I am injecting 25 nanograms and that is probably about average.

You would have to ask your doctor about taking it with Valcyte or maybe someone else here knows. It is very easy to inject yourself. My doctor tells us to do it by subcutaneous injection. Hopefully you will have minimal side effects and the side effects seem to be not from GcMAF but from macrophages attacking pathogens and creating inflammation and die-off. The peak time for macrophage activation is 3 - 4 days after injection though some feel the effects earlier.

Best wishes!
Sushi
 
J

janey

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Hi Omar
I've been on GcMAF for a long time. As is often the case with CFS, we need to start at very low doses and slowly work our way up, depending on what we can tolerate. My initial reaction at 0.2 dose was really bad. I had to wait for a few weeks till I recovered. I then tried again at a dose of 0.1, which I was able to tolerate. I inject myself sub-cutaneously once a week. Over a period of about 2 years, I have slowly worked up to a dose of 0.5.

I believe it should be fine taking Valcyte simultaneously. I have been taking Valtrex all the way during this treatment.

Side effects for me after the initial 0.2 dose was severe headaches and insomnia - I didn't sleep for a few nights and felt absolutely awful. After recovering and going down to 0.1, I had no real side effects, apart from flushing and needing more sleep on the day of the injection.

Good luck!
 
patient.journey

patient.journey

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Sushi said:
Great you will get to try GcMAF. When you say he will start you at a "2 dose" what does that mean? 2 nanograms, .2 ml, 2 ml? The dose is very important. Also, what is his source of GcMAF as different sources prepare it with different dilution strengths?

16 weeks would not be long enough for an ME/CFS patient. I and others have taken it for over 2 years. At 16 weeks you might start to notice an effect though. You inject once a week at the dose you and your doctor decides is right for you. I am injecting 25 nanograms and that is probably about average.

You would have to ask your doctor about taking it with Valcyte or maybe someone else here knows. It is very easy to inject yourself. My doctor tells us to do it by subcutaneous injection. Hopefully you will have minimal side effects and the side effects seem to be not from GcMAF but from macrophages attacking pathogens and creating inflammation and die-off. The peak time for macrophage activation is 3 - 4 days after injection though some feel the effects earlier.

Best wishes!
Sushi
Click to expand...
The dose is .2 and he might start with.1 but as I said he was saying that with autism he saw good results in .2 but he is fine with .1 starting if thats better !!

But I shoul know for how much time should I stay in every dose if am going to take it for this long time ? He knows the 16 weeks protocol only they use with autism patients so how long you stayed in each dose and how did you know the right time to left it up ?

When did you start to feel better ? How much time did I take ? And how much better you felt in it ?

He get it from "gcmaf.eu" is that a good place ?
 
patient.journey

patient.journey

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janey said:
Hi Omar
I've been on GcMAF for a long time. As is often the case with CFS, we need to start at very low doses and slowly work our way up, depending on what we can tolerate. My initial reaction at 0.2 dose was really bad. I had to wait for a few weeks till I recovered. I then tried again at a dose of 0.1, which I was able to tolerate. I inject myself sub-cutaneously once a week. Over a period of about 2 years, I have slowly worked up to a dose of 0.5.

I believe it should be fine taking Valcyte simultaneously. I have been taking Valtrex all the way during this treatment.

Side effects for me after the initial 0.2 dose was severe headaches and insomnia - I didn't sleep for a few nights and felt absolutely awful. After recovering and going down to 0.1, I had no real side effects, apart from flushing and needing more sleep on the day of the injection.

Good luck!
Click to expand...
I will try starting at the same dose but for how long did you stay on it and when did you jumped to .2 ?

When did you start to feel Better and how much better you get after taking it ?
 
Sushi

Sushi

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Omar88 said:
The dose is .2 and he might start with.1 but as I said he was saying that with autism he saw good results in .2 but he is fine with .1 starting if thats better !!

But I shoul know for how much time should I stay in every dose if am going to take it for this long time ? He knows the 16 weeks protocol only they use with autism patients so how long you stayed in each dose and how did you know the right time to left it up ?

When did you start to feel better ? How much time did I take ? And how much better you felt in it ?

He get it from "gcmaf.eu" is that a good place ?
Click to expand...

Omar, .2 of what? This is critical. Is that a measurement of mls? And if so, what is the dilution? That is the way you calculate a dose. For instance I have a vial that holds 1 ml of GcMAF and has 100 ngs in it. So, for me, .2 mls = 20 nanograms. This is a fairly large dose to start with until you know how you will react.

Responses to GcMAF vary a great deal. Some feel almost well after taking it for a year or so. More often you get improvement but are not fully well. Some (usually those with a lot of inflammation or a lot of other infections) feel worse. Inflammation is usually what makes you feel worse.

If your doctor is getting GcMAF from GcMAF.eu it is about 4 times as concentrated as the solution I am using. So if you injected .2 mls you would be getting about 80 ngs--much too high for most ME/CFS patients.

With my doctor, once you find your optimal dose (in other words you feel an effect but minimal side-effects) you stay at that dose unless you develop signs of inflammation after taking it for a while. I had to lower my dose after getting inflammation after 4 months, but I didn't raise it. If you raise it past your tolerance you will get side effects.

Sushi
 
patient.journey

patient.journey

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Sushi said:
Omar, .2 of what? This is critical. Is that a measurement of mls? And if so, what is the dilution? That is the way you calculate a dose. For instance I have a vial that holds 1 ml of GcMAF and has 100 ngs in it. So, for me, .2 mls = 20 nanograms. This is a fairly large dose to start with until you know how you will react.

Responses to GcMAF vary a great deal. Some feel almost well after taking it for a year or so. More often you get improvement but are not fully well. Some (usually those with a lot of inflammation or a lot of other infections) feel worse. Inflammation is usually what makes you feel worse.

If your doctor is getting GcMAF from GcMAF.eu it is about 4 times as concentrated as the solution I am using. So if you injected .2 mls you would be getting about 80 ngs--much too high for most ME/CFS patients.

With my doctor, once you find your optimal dose (in other words you feel an effect but minimal side-effects) you stay at that dose unless you develop signs of inflammation after taking it for a while. I had to lower my dose after getting inflammation after 4 months, but I didn't raise it. If you raise it past your tolerance you will get side effects.

Sushi
Click to expand...
As you see I don't know a lot in this thing just the basic I read in this website and heard today :)

The doctor told me that the bottle will be enough for 10 weeks so thats the only thing i know also About how much I would be taking
, if you know how much is the quantity of the bottle you would knw how much I will be taking ,,

I would run some bacterial tests before I start taking it, because I read that bacterial infection speically could make it worse or at least the symptoms after taking the injections will be so hard ! IS THAT RIGHT ?

As usual you Are the beat helped Sushi thank you a lot ,,
 
Sushi

Sushi

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Omar88 said:
As you see I don't know a lot in this thing just the basic I read in this website and heard today :)

The doctor told me that the bottle will be enough for 10 weeks so thats the only thing i know also About how much I would be taking
, if you know how much is the quantity of the bottle you would knw how much I will be taking ,,

I would run some bacterial tests before I start taking it, because I read that bacterial infection speically could make it worse or at least the symptoms after taking the injections will be so hard ! IS THAT RIGHT ?

As usual you Are the beat helped Sushi thank you a lot ,,
Click to expand...

Omar, why not open a chat with me and we can talk more about how to proceed with this. It sounds like your doctor may not have a lot of experience with GcMAF. That could result in him giving you too large a dose and you having a hard time with it.

Since the solution from GcMAF.eu is so concentrated, those who want to take a small dose often have their doctor or pharmacist dilute it with sterile saline. Otherwise, when you take a low dose, it is such a tiny quantity of liquid that some of it will become "stuck" in the syringe mechanism.

Best,
Sushi
 
patient.journey

patient.journey

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Sushi said:
Omar, why not open a chat with me and we can talk more about how to proceed with this. It sounds like your doctor may not have a lot of experience with GcMAF. That could result in him giving you too large a dose and you having a hard time with it.

Since the solution from GcMAF.eu is so concentrated, those who want to take a small dose often have their doctor or pharmacist dilute it with sterile saline. Otherwise, when you take a low dose, it is such a tiny quantity of liquid that some of it will become "stuck" in the syringe mechanism.

Best,
Sushi
Click to expand...
Am in Jordan far away of my home and am using my mobile to talk with you ! Because there is no chat here on the mobile, I will try to find a way to open a chat by going to a caffe or something by tomorrow because its 3 am here now!

Yes he only work with autisim patient and it seems that it's easier for them to take higher doses than us but it's my best opportunity I found here and I have to take it !

Thanks again and again
 
Sushi

Sushi

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Opinion realm--no promise of accuracy! :confused:

GcMAF.eu says that they assayed it and they gave a very unfavorable report. That should be on their website...but then they are the competition.

What troubled me was that they said that the dose could range from (this is from memory and you know how that is!) 1500 ng to 25oo ng. That could be very dangerous--especially if their GcMAF has the potency of other sources. The max dose is usually 100 ng.

Sushi
 
Sushi

Sushi

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Omar88 said:
Saw this page before, is there a difference between GcMAF brands ? Is it all made by the same way ? And is there stuff better than others ?
Click to expand...

Yes, there are differences. A big one is the dilution of the GcMAF solution.

Sushi
 
patient.journey

patient.journey

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Sushi said:
Opinion realm--no promise of accuracy! :confused:

GcMAF.eu says that they assayed it and they gave a very unfavorable report. That should be on their website...but then they are the competition.

What troubled me was that they said that the dose could range from (this is from memory and you know how that is!) 1500 ng to 25oo ng. That could be very dangerous--especially if their GcMAF has the potency of other sources. The max dose is usually 100 ng.

Sushi
Click to expand...
So they are not a good a source ? Where could I find better one ?
 
Sushi

Sushi

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Omar88 said:
So they are not a good a source ? Where could I find better one ?
Click to expand...

GcMAF.eu is fine. They just make a very concentrated form (designed for cancer patients I think) so that some patients will have to dilute it. They are also a commercial lab so they charge much more for GcMAF than some doctors do.

Sushi
 
globalpilot

globalpilot

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janey said:
Hi Omar
I've been on GcMAF for a long time. As is often the case with CFS, we need to start at very low doses and slowly work our way up, depending on what we can tolerate. My initial reaction at 0.2 dose was really bad. I had to wait for a few weeks till I recovered. I then tried again at a dose of 0.1, which I was able to tolerate. I inject myself sub-cutaneously once a week. Over a period of about 2 years, I have slowly worked up to a dose of 0.5.

I believe it should be fine taking Valcyte simultaneously. I have been taking Valtrex all the way during this treatment.

Side effects for me after the initial 0.2 dose was severe headaches and insomnia - I didn't sleep for a few nights and felt absolutely awful. After recovering and going down to 0.1, I had no real side effects, apart from flushing and needing more sleep on the day of the injection.

Good luck!
Click to expand...
You didn't mention if it is helping you!
 
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