Dr. success using higher doses of GCMAF

[Googsta]

I'm suprised you got a response Hixxy, alot of DR L's patients have trouble with correspondence.

I am in contact with a young member who is a patient of his & trying MAF314. They haven't had a great deal of improvement thus far.

 

[Sushi]

Yes i would like to hear if nk function has improved, maybe viral titres as well??

cheers!!!

Hi Heaps,

My NK absolute has improved. I don't think I have a function test. My reactivated EBV has also gone down.

Sushi

 

[hixxy]

I'm suprised you got a response Hixxy, alot of DR L's patients have trouble with correspondence.

I am in contact with a young member who is a patient of his & trying MAF314. They haven't had a great deal of improvement thus far.

Any idea how long they've been on the MAF 314? Mustn't be very long at all.

 

[hixxy]

Hi Heaps,

My NK absolute has improved. I don't think I have a function test. My reactivated EBV has also gone down.

Sushi

The past lymphocyte subset test I had done didn't have reference ranges for NK cells (see below image). What are the reference ranges supposed to be?



It seems a lot of the tests done overseas are more comprehensive. Even without the full NK function test.

 

[Googsta]

Any idea how long they've been on the MAF 314? Mustn't be very long at all.

I've sent a message, will let you know when I get a response

 

[alex3619]

I have a couple of thoughts on the method of dosing that Dr. E. is using for Cindy. Remember, she had been taking GcMAF at a relatively low dose, 25 ng, for over a year before Dr. Enlander started increasing her dose. Also, she has not been sick for many years. I am not sure how these two things may play together, but possibly, having taken GcMAF for so long before raising the dose, enough pathogens have been "pacmanned" so that she is not getting as much of an inflammatory response as she might have, had she raised the dose in the beginning months of treatment.

Hi Sushi, that possibility makes a lot of sense to me. The more I read the more I think that shifting the immune system strongly to Th1, with an active NK cell population, is a big part of recovery. Bye, Alex

 

[heapsreal]

The past lymphocyte subset test I had done didn't have reference ranges for NK cells (see below image). What are the reference ranges supposed to be?

View attachment 6892

It seems a lot of the tests done overseas are more comprehensive. Even without the full NK function test.

reference ranges i have, total lymphocytes 1.1-4, cd20 .06-.6, cd56 .07-.6, cd3 .8-2.4, cd4 .5-1.6, cd8 .2-1, cd4:8 1-3.5
Hixxy, alot of your tests are in % so not sure how much these reference ranges will help??

cheers!!!

 

[hixxy]

reference ranges i have, total lymphocytes 1.1-4, cd20 .06-.6, cd56 .07-.6, cd3 .8-2.4, cd4 .5-1.6, cd8 .2-1, cd4:8 1-3.5
Hixxy, alot of your tests are in % so not sure how much these reference ranges will help??

cheers!!!

Exactly. I found as much with my own googling. Need some expertise in converting!

 

[hixxy]

I've sent a message, will let you know when I get a response

You edited out the most interesting part of your post! I indeed would love to know of Dr L runs nagalase tests.

 

[Googsta]

You edited out the most interesting part of your post! I indeed would love to know of Dr L runs nagalase tests.

I asked that too , hopefully a response isn't too far away.

 

[Sushi]

The past lymphocyte subset test I had done didn't have reference ranges for NK cells (see below image). What are the reference ranges supposed to be?

View attachment 6892

It seems a lot of the tests done overseas are more comprehensive. Even without the full NK function test.

Hi Hixxy,

My tests were different and I don't know how to compare them. Here is a sampling of what I had done: http://www.redlabs.be/red-labs/our-tests/immune-function-assays.php

http://labogids.uzbrussel.be//I/IMMUN003.htm This can be translated with Google Chrome.

Hope this helps.
Sushi

 

[hixxy]

I thought I read a while back that Bioscreen in Australia wasn't going to be offering some of these specialised Red Labs tests. Red Labs offers the Bioscreen stool test ...

Has this happened and I haven't heard about it?

 

[CindyWillis]

I received an email from Dr. Enlander which clarifies his opinion on GCMAF:

"The correct statement that I made was that I am not making a claim that this is a Cure for ME/CFS, some patients have been helped with this treatment, a patient who was bedridden with the disease for 14 years is now capable of being productive. Some patients have not been helped."

Thank you. I think that's a good idea. You're right- it's possible we are using different terminology.

I think the word "cure" in the headline of the thread is an eye grabber.

His views on whether he believes this is the cure for CFS would be good for us to understand - in addition to any other insights he might have.

 

[xrunner]

i comboed betaglucans for 2-3 days within the first 6 months of gcmaf and i immediately got back severe mouth candidosis, so stopped it immediately and candidosis gone in a few days.i remember using gcmaf inj twice a week at that time.
so i think betaglucans dont work with gcmaf

today after more than 48weeks of gcmaf candida problems and all immune suppression diseases are totally gone, i am even using interferon inducers by trl7 activation and intf makes immune suppression itself by lowering neutrophils but even getting neutr to as low as 29% had no effects on immune system, no candidosis, no flu, no pains, just fever 38.5 but that s interferon made by dentric cells and macrophages after stimulation by trl7 agonsists

i guess today my nagalase is fully normal, i will retest nagalase in july

Hi lobba123,

Do you think that the candida problem was due to the yeast in the beta glucans or related to an interaction with GcMAF, or something else?

 

[Ema]

The posts debating whether or not ME is a disease or syndrome have been moved to their own thread that can be found here:

http://forums.phoenixrising.me/showthread.php?17854-ME-Syndrome-or-Disease

Ema

 

[Adster]

Hi lobba123,

Do you think that the candida problem was due to the yeast in the beta glucans or related to an interaction with GcMAF, or something else?

My understanding is that beta glucan no longer resembles live yeast. It should actually trigger an immune response against candida, I think. The quality of beta glucan appears to vary greatly though. There seems to be one source that is much better than the others, if the literature is to be believed.

 

[SickOfSickness]

As others said, 100% functioning is not necessarily the same as a cure. But we'll take it Most of us would spend all our money after we paid our bills, to get there and stay there.

 

[SOC]

As others said, 100% functioning is not necessarily the same as a cure. But we'll take it Most of us would spend all our money after we paid our bills, to get there and stay there.

Agreed. My daughter is in full remission (95-100% functional), but none of us who know anything about ME/CFS consider her "cured". I don't even want to think what might happen if she got another live virus vaccine. She still needs to be careful, IMO, not to do things that might cause a crash. We are planning to send her for immune testing and maybe exercise testing to see if there are still abnormalities even though she functions normally.

I really, really, really hope one of Lipkin's studies comes up with something that indicates a root cause of this illness.

 

[heapsreal]

I wonder if the longer we are ill the more damaged our immune system gets or infections go deeper, which is why people who take antivirals early on with cfs seem to have a higher success rate closer to the 95-100% then someone who started avs several years after having cfs, improvements still occurr but the 95-100% is alot more rare. Also being younger seems to have a better recovery too??

soc how long did your daughter have cfs before starting av's? Her immune tests will be interesting, will she be getting an nk function test as well??

cheers!!!

 

[SOC]

I wonder if the longer we are ill the more damaged our immune system gets or infections go deeper, which is why people who take antivirals early on with cfs seem to have a higher success rate closer to the 95-100% then someone who started avs several years after having cfs, improvements still occurr but the 95-100% is alot more rare. Also being younger seems to have a better recovery too??

soc how long did your daughter have cfs before starting av's? Her immune tests will be interesting, will she be getting an nk function test as well??

cheers!!!

I wonder the same thing, heaps. My daughter and I make for an interesting case study. We came down with the same very sudden onset flu-like illness within a week of each other. While I "recovered", I had frequent bouts of what I would now call PENE. Daughter, on the other hand, appeared normal except for big crashes a couple times a year probably associated with viral infections. We would not have recognized them as part of ME/CFS if we weren't knowledgeable from my experience. Dr Lapp saw her while she was in a remission period and agreed that she has ME/CFS.

I was probably continuously sick from shortly after the initial infection, although I kept operating (or trying to) normally for a couple of years, so I've been continuously sick for about 8 years -- 6 years prior to Valcyte.

Daughter was largely in remission for about 5 years until pre-college vaccinations. We're guessing the live virus chicken pox (HHV-3) reactivated HHV-6 and Epstein-Barr (HHV-4). After that she was continuously ill for 1 year before Valcyte. Dr L seems to count from how long a patient is continuously ill, not from first time one was ill when considering recovery possibility.

Daughter has now been in full remission (and off Valcyte) for 9 months. She still takes Valtrex which may be preventing the once or twice a year crashes (reactivations?) she used to have.

Why did 18 months of Valcyte put her in full remission while I'm still largely housebound after more than 2 years of Valcyte? Length of continuous illness is one possibility. Age of patient (therefore weaker immune system) could be another. Degree of illness? I was sicker than she was when we started Valcyte, so that could also be a factor.

Based on our experience alone, I would guess that longer illness means more and longer opportunistic infections which do a lot of damage and may prevent full recovery. As a result, I'm a proponent of aggressive AV treatment as soon as possible.

Yes, she'll be getting an NK function tests along with the others. We'll have the same tests, so it will be interesting to compare results.