GcMaf questions.. a bit confused

[Ivana]

Hi all,

I've got a few GcMaf questions I was hoping someone could help with. With all the information out there about GcMaf, it's hard to know what to beleive anymore.

I was meant to start mine a while ago but even Nexavir was a bit much so I didn't, so I will be starting it shortly. I have heard that for the subset of patients whose cfs is autoimmune based, that GcMaf makes them worse. Is this true? How do we know whether our cfs is autimmune based, dysbiosis related etc to determine whether GcMaf would be good for us? What sort of of people respond to GcMaf? Sorry if these are stupid questions, too tired to research any more.

Best wishes to all

Ivana

 

[Sushi]

Hi all,

I've got a few GcMaf questions I was hoping someone could help with. With all the information out there about GcMaf, it's hard to know what to beleive anymore.

I was meant to start mine a while ago but even Nexavir was a bit much so I didn't, so I will be starting it shortly. I have heard that for the subset of patients whose cfs is autoimmune based, that GcMaf makes them worse. Is this true? How do we know whether our cfs is autimmune based, dysbiosis related etc to determine whether GcMaf would be good for us? What sort of of people respond to GcMaf? Sorry if these are stupid questions, too tired to research any more.

Best wishes to all

Ivana

Hi Ivana,

Nexavir was harder for me in the beginning than GcMAF...but we are all different. Have you asked KDM about the autoimmune question? From his testing he could probably tell you if you have autoimmune issues and if so how GcMAF would effect that.

It is hard to know who will respond well to GcMAF--not sure anyone knows for sure. Having high nagalase is thought to be a sign that you would benefit from it though. If you have high inflammation now, you could have problems with the added inflammation that GcMAF is likely to bring. (Look at your IL 8)

Those do have a lot of inflammation do a lot better on a very low dose. For me, inflammation has been the only hard thing to deal with on GcMAF and I have had to lower my dose or give it a break at times.

Best wishes,
Sushi

 

[Ivana]

Thanks, Sushi. I'll ask him.

My IL8 is high, which is another reason he recommended Naltrexone. I'm actually in the process now of diluting the 4.5mg, like you suggested

When you said your inflammation goes up with GcMaf, what kind of inflammation do you mean? Physically, like your body which you can see, or your insides which u can feel (like my brain) or do u just get your inflammation markers retested?

Best wishes
Ivana

 

[Sushi]

Hi Ivana,

Some people do seem to feel inflammation in the head. I personally feel it it the body--mainly my legs aching. I have correlated these feelings with a rise in my inflammation markers like IL8. Also they correspond to the day or two in the week after the GcMAF shot when macrophages should be at their peek.

Several of us taking GcMAF think that LDN helps prevent inflammation. I know two of us had been taking it for about a year before starting GcMAF and had virtually no elevated inflammatory cytokines when tested before GcMAF and while on GcMAF, our inflammatory markers didn't rise as much as some others I have seen.

Best wishes with this! Some only take a tiny, tiny dose of GcMAF at first to see how they will react. If you get your first shot while in Belgium, they give it to you IV so any reaction you might have will be quick and while you are still in the clinic. If you have a sympathetic doctor you are working with in Australia, you could get your first shot IV in the office. I took the first three months IV. Now I do subcut.

Sushi

 

[Ivana]

Hi Sushi,

It's interesting you said your arms and legs ache when you get inflammation. I get it too. Whenever I have a cytokine storm, my calves and arm muscles KILL. I thought it was just muscle pain so get someone to give me a rub. How can u tell the difference between it being inflammatory or just muscle pain? Whilst the inflammation is happening, do u feel like your insides are inflamed (for me, it's similar to a feeling of being nervous, i feel jittery, and suddenly its like I need to pee immediately).. that's how i know its coming.

Ive heard that taking gcmaf sublingually can be beneficial, with less side affects.. kdm wrote on my prescription that I should do it subcut from the beginning,.. I'm starting with 25ng

Ivana

 

[Sushi]

Hi Ivana,

I don't feel the inflammation "inside"--just the kind of aching you get with the flu. Did the massage help the aching? Seems like it would if it were muscle pain. I guess if you took an ibuprofen it would hit both muscle pain and inflammation so it would be hard to tell.

What is your IL8? If you don't want to post it you could send me a message or open a chat. We could compare IL8 levels if you like.

Though you were prescribed 25 ng of GcMAF you might want to try a lower dose at first. You'll see some people here who started with 25 and then had to reduce it and work back up slowly.

Sushi

 

[Ivana]

Hi Sushi

When I had the tests done, KDM said I was having a 'good day' so my IL8 only came up as 60 (ref 0 - 15). However, now he says they are prob higher as I feel the inflammation a lot more. What was your level?

The massage didn't help much, so i guess it was the aching which you get with the flu.. I always wondered why the massage didn't help.

I'll look into starting a lower dose of GcMaf as I tend to react to most meds.

Ivana

 

[Sushi]

Hi Sushi

When I had the tests done, KDM said I was having a 'good day' so my IL8 only came up as 60 (ref 0 - 15). However, now he says they are prob higher as I feel the inflammation a lot more. What was your level?

The massage didn't help much, so i guess it was the aching which you get with the flu.. I always wondered why the massage didn't help.

I'll look into starting a lower dose of GcMaf as I tend to react to most meds.

Ivana

Hi,

Before GcMAF mine was 40. When last tested in Dec it was about 310--which is high but I wasn't feeling the aching at that point. I am aching now as I have tried raising the dose slowly from 25 to 40. It could be that my immune system is better now, so I need to take less GcMAF to get the same effect--I may be activating macrophages naturally. I will be going back down to 25!

More "time will tell!"

Best,
Sushi

 

[alice]

I've heard that taking gcmaf sublingually can be beneficial, with less side affects.. kdm wrote on my prescription that I should do it subcut from the beginning,.. I'm starting with 25ng

Ivana,
My doctor suggested doing GcMaf sublingually. I am very sensitive to all medications and he thinks SL is the most gentle. I have not started. So that would be 25 mg SL once a month? Have you done any sublingually? Has anyone here done SL?

I'm pondering between MAF 878 fromn Enlander (e-Bay) or doing the SL GcMaf that my doctor has at his office (100 miles from me).

Seems like the yoghurt preparation of the Maf878 that you order is not real clear as yet and I'd like to get started.

My doctor has not checked my IL8(interleukin 8?) I don't think; what lab does this test? I have very high TGFbeta1 - doesn't that test for inflammation? Obviously there is much here I don't understand. Also I'm not clear about the Nexavir - Dr. says it is very expensive, and also by injection. How expensive? Do some people take GcMaf without Nexavir?. I have very high viral load and valacyclovir is not touching them - have taken it for over a year. Nexavir is a porcine liver so maybe some of Cheney's gels would work? I'm not a Cheney patient; but I think my doctor can get it, probably $$$/.

I'm also on LDN - at 3.5 mg now. I'm not sure it is helping. Only been taking it consistently for about 2 months starting at 0.5 mg. I cannot manage without tramadol but my doctor says it is okay to stay on tramadol. The LDN will knock out the tramadol effects and not the other way around. I have to allow at least 6 hours between tramadol and LDN.

 

[Sushi]

Alice,

There are different opinions about whether GcMAF taken sublingually will survive the transit through the gut--or how much will.

Some insurance covers Nexavir--mine does--so it doesn't cost me much. If you take a full dose, every day, out of pocket and you get it in the US, it is $450 per month--less in Europe where it is called 4ME. Also less from New Zealand. I take it 3 times a weeks. Some doctors who give GcMAF find that the get much better results if they also give Nexavir at the same time.

I get my IL 8 tested at Redlabs in Brussels, but there are US labs that test it too. Not sure which though.

Best,
Sushi

 

[alice]

Sushi
Do you do your own injections of Nexavir? What dose of Nexavir? Just checked - my insurance does cover part of it, it's asking for dose. There are two doses available

Do I uderstand correctly - you get one injection of GcMaf from the doctor each month and you do 3 injections of Nexavir per week.

Many thanks..

 

[Sushi]

Hi Alice,

Not exactly. Most people inject themselves with GcMAF weekly subcut.

I also inject 2mls (the standard dose) of Nexavir subcut 3 times a week, but many do it every day. It was a bit hard for me to tolerate so my doc told me to do it 3 times a week. I also inject hydrox B12 3 times a week subcut.

Injecting is easy once you get past the natural reluctance to stick yourself with a sharp object. It usually doesn't hurt at all.

Best,
Sushi

 

[Overstressed]

Hi,

Before GcMAF mine was 40. When last tested in Dec it was about 310--which is high but I wasn't feeling the aching at that point. I am aching now as I have tried raising the dose slowly from 25 to 40. It could be that my immune system is better now, so I need to take less GcMAF to get the same effect--I may be activating macrophages naturally. I will be going back down to 25!

More "time will tell!"

Best,
Sushi

Hi Sushi,

is that correct, your IL8 was 310 ? Holy mahony, that's indeed high, and macrophages secrete indeed IL8. But, is that safe ? Did your doctor didn't say anything about that being so high ? IL8 is a pro-inflammatory chemokine...

I just read on the Wiki that there's a higher chance of shizophrenia when a pregnant mother has high IL8. So, it looks that Gc-Maf is not safe at all then for pregnant women.

Take care,
OS.

 

[Sushi]

Hi Sushi,

is that correct, your IL8 was 310 ? Holy mahony, that's indeed high, and macrophages secrete indeed IL8. But, is that safe ? Did your doctor didn't say anything about that being so high ? IL8 is a pro-inflammatory chemokine...

I just read on the Wiki that there's a higher chance of shizophrenia when a pregnant mother has high IL8. So, it looks that Gc-Maf is not safe at all then for pregnant women.

Take care,
OS.

Hi OS,

310 is high but relatively--for those taking GcMAF, it is not that high--many have it much, much higher--and some patients have it that high who haven't taken GcMAF. The doc just said it was high but he is used to seeing IL 8 get high on GcMAF. It goes down quickly (for me) when I take a break from GcMAF.

Do you know what yours is (has been)?

Best,
Sushi

 

[Overstressed]

Hi OS,

310 is high but relatively--for those taking GcMAF, it is not that high--many have it much, much higher--and some patients have it that high who haven't taken GcMAF. The doc just said it was high but he is used to seeing IL 8 get high on GcMAF. It goes down quickly (for me) when I take a break from GcMAF.

Do you know what yours is (has been)?

Best,
Sushi

Hi Sushi,

no, I've never been tested on it. In fact, I was looking for a cytokine test, but found no lab doing such tests, here in Belgium. Not even at Universities.

Does yours go down to normal, or remain elevated ? IL-8 is high upon this population, no ?

Best regards,
OS.

p.s. I've restarted Gc-Maf since 2 weeks, but now I have so much back- and neck pain that I had to stay home for two days, because I couldn't drive my car. It started when I started Gc-Maf again.

 

[Sushi]

Hi Sushi,

no, I've never been tested on it. In fact, I was looking for a cytokine test, but found no lab doing such tests, here in Belgium. Not even at Universities.

Does yours go down to normal, or remain elevated ? IL-8 is high upon this population, no ?

Best regards,
OS.

p.s. I've restarted Gc-Maf since 2 weeks, but now I have so much back- and neck pain that I had to stay home for two days, because I couldn't drive my car. It started when I started Gc-Maf again.

Redlabs in Brussels will test your inflammatory cytokines. I did not have my inflammatory cytokines tested during my 4 month "break" from GcMAF, but inflammatory symptoms were greatly reduced and I'd guess that corresponded with a drop in IL 8.

Best wishes,
Sushi

 

[cyrusromeo]

Question re: having a test shot in a doctor's office. I haven't heard of anyone having a reaction, but if there is, what does a doc do? I'm hoping to start the gcmaf in a few weeks and will go to my regular gp as I can not travel to NY. What bad reaction could there be and what would the doc do for it? Mine isn't going to know, I'm hoping/assuming my specialist will give a heads up. Anyone know more about this?
Christa

 

[Sushi]

Question re: having a test shot in a doctor's office. I haven't heard of anyone having a reaction, but if there is, what does a doc do? I'm hoping to start the gcmaf in a few weeks and will go to my regular gp as I can not travel to NY. What bad reaction could there be and what would the doc do for it? Mine isn't going to know, I'm hoping/assuming my specialist will give a heads up. Anyone know more about this?
Christa

Maybe they are being cautious about an allergic reaction? I've never heard of one, but I suppose it could happen.

Sushi