GcMAF

Discuss autism diets and biomedical treatments of autism.

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jk506
Posts: 129
Joined: Thu Jun 30, 2011 2:59 pm

Re: GcMAF

Postby jk506 » Thu Apr 05, 2012 3:34 pm

Hi there,

We have had a similar experience and having an upper respiratory infection made things worse. If you want, pm me and we can discuss the possibilities further. I have discontinued the shots also and still dealing with issues.

Jk

Kastania
Posts: 864
Joined: Tue Apr 07, 2009 9:13 am

Re: GcMAF

Postby Kastania » Thu Aug 23, 2012 8:55 am

Any updates from those doing GcMAF - would like to hear how you are doing.

Dylynn
Posts: 773
Joined: Tue Feb 03, 2009 7:29 pm

Re: GcMAF

Postby Dylynn » Thu Sep 13, 2012 11:18 am

Can I get a Nagalase test done without a doctors order? If so, where? TIA!!
Son - Somewhere on the Spectrum

jk506
Posts: 129
Joined: Thu Jun 30, 2011 2:59 pm

Re: GcMAF

Postby jk506 » Fri Sep 14, 2012 11:26 am

We did about 26 shots of gmcaf but stopped few months ago. We did see some initial gains but my son got clostridia and pandas flare and a lot of inflammation. It came to a point where we couldn't tolerate it any more. My understanding is that it should be started after preparing the body by fixing the BH4 pathway as per Dr Yasko. My son got a lot of inflammation while on it. I may give it another try once I have my son on a higher dose of MTHF. So far he is on 1000 mcg and it has reduced inflammation a lot already.

Jk

Krassi
Posts: 2
Joined: Tue Feb 07, 2012 1:22 am

Re: GcMAF

Postby Krassi » Wed Sep 19, 2012 7:37 pm

We also had to stop the GcMAF injections (after 4.5 months on it) because my son's clostridia and PANDAS got too bad and Dr. B recommended to stop until getting them under control. The first 2 months we saw some receptive language improvements, but now the OCD is so bad that it is hard to see any positives. We have been supplementing BH4 before and during the GcMAF (my son has all 3 mutations which per Yasko require BH4 supplementation) plus we do daily doses of folinic acid, but all that didn't make any positive difference unfortunately. It seems to me that kids who have lower nagalase to begin with (prior to GcMAF) respond better then kids like my son who tested initially very high (his initial nagalase was 1.9). Of couse this is just my speculation and based only on what I read on this and other autism forums and treatment with GcMAF, I might be wrong. We are waiting to receive the second nagalase test result, so I will let the group know if the nagalase went down and if finally within the normal range.
HTH,
Krassi

jk506
Posts: 129
Joined: Thu Jun 30, 2011 2:59 pm

Re: GcMAF

Postby jk506 » Sun Sep 23, 2012 12:31 am

Hi there,

My son's nagalase level was 1.10 and he had such terrible anxiety and ocd that we couldn't take him anywhere with us. He had unpredictable mood swings. Even though his academics improved, his behaviors completely changed and he changed from overall pleasant kid to angry and whiny child. I have a feeling that gcmaf activates the macrophages and we see a lot of clostridia and other infectious symptoms because despite activating macrophages, the whole process is not strong enough to eradicate the pathogens. I read on an HIV forum few months ago that they were using antimicrobials along with gcmaf to maximize the eradication of infection.

Krassi, if your son was already on BH4 and he still ended up with inflammation and clostridial flares, then I don't think I will find the courage to try it again. The few months on it were like hell for me and my husband and I still havn't recovered from the emotional trauma it caused the whole family from my son's screaming and crying every few minutes. The gains were not that great to pay such a big price. I am actually seeing better results with valtrex, diflucan and vancomycin.

Jk

myc
Posts: 58
Joined: Wed Dec 11, 2013 4:28 pm

Re: GcMAF

Postby myc » Thu Dec 12, 2013 10:02 am

Hello,

I am new to this board.. and I have a 19 months old daughter with red flags.. we will have probably a diagnose by the end of January… we started therapy on speech and communication a couple months ago.. but no improvements so far :(

I came across the website about GcMAF and it sounds almost to good to be true.. I was going through the pages here and it has been a long time since someone posted about it..

are here some people with experience about this ??? Positive or negative ?

TamiW
Posts: 3855
Joined: Fri Feb 25, 2005 12:46 pm

Re: GcMAF

Postby TamiW » Fri Dec 20, 2013 8:17 pm

Anyone try the oral GcMAF?
Tami

happymom
Posts: 24
Joined: Wed Jan 01, 2014 4:54 pm

Re: GcMAF

Postby happymom » Wed Jan 01, 2014 5:10 pm

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Last edited by happymom on Sun Nov 02, 2014 8:20 am, edited 1 time in total.

kulkulkan
Posts: 2075
Joined: Tue Mar 13, 2012 1:37 pm

Re: GcMAF

Postby kulkulkan » Wed Jan 01, 2014 9:19 pm

On the Bravo review, so what else did you do that greatly helped to get to 95% recovery? I appreciate Bravo helped with the last 5%.

tedrooney
Posts: 1
Joined: Sat Mar 22, 2014 6:09 pm

Re: GcMAF

Postby tedrooney » Sat Mar 22, 2014 6:26 pm

Is anyone else skeptical of the posts we get from from users like happymom? 95% recovery before this treatment? Nice. These are the same moms that try something like B12 injections and their kids are reading the dictionary the next day. I'm just not buying it anymore. I often wonder if these posts are planted by the marketing resources at Immune Bio or Dr Bradstreet's people. Most of these posters only have "1" post and never reply to questions. Just sayin... Does it not strike anyone else as odd that the best research universities in the world have not come up with any supporting evidence on GcMAF to date? I Unless I see something published in a medical journal then I am not putting an injection in my son. In our case... we tried a gluten free, casein free diet with supplements for 2+ years since my son was 2 years old. He is now 4. We saw several improvements over this duration but guess what? When we took him off of everything we saw zero regression in his behaviors. Was his progress due to the diet and supplements or simply his brain's maturity. The science behind most of these treatments is simply not proven but eventually we will get there with compelling research. Lastly... I also noticed that Dr. Bradstreet went to the University of South Florida and I can't say that I've seen much prominent research come out of this university. Talk to me when we have someone from Harvard, U-Penn, Yale, Columbia, Johns Hopkins or Stanford putting out research and results and then you'll have my attention.

DS/ASD mom
Posts: 1
Joined: Mon Jun 02, 2014 3:11 pm

Re: GcMAF

Postby DS/ASD mom » Mon Jun 02, 2014 3:25 pm

Hi,

I too have a child with Down syndrome and autism. I am very interested in how "Happy Mom" achieved a 95% recovery with her son. Please share!

from one Mom to another

andyseattle
Posts: 151
Joined: Wed Jan 29, 2014 4:20 am

Re: GcMAF

Postby andyseattle » Wed Jun 04, 2014 3:39 am

I'm about to start in July, 2014.
It will be helpful and really thankful,
if there is any update for the result?

Please.

FatherOf2
Posts: 1662
Joined: Mon Mar 11, 2013 1:37 am

Re: GcMAF

Postby FatherOf2 » Sat Jun 07, 2014 10:21 am

I was reading a story about the 4th case of the human Mad Cow Disease http://www.modvive.com/2014/06/06/4th-u-s-case-mad-cow-disease-confirmed-public-health-threat/. The followig phrase attracted my attention:

The disease is caused by eating infected meat or via blood. This is why people who lived in the United Kingdom and other parts of Europe for extended periods of time are not allowed to donate blood in the United States... Individuals infected with vCJD can sometimes live many years with no symptoms. It can lie dormant in the body making it difficult to assess when and where the person contracted it.


Another interesting story was published recently with a self-explanatory title "One in 2,000 people in the UK carry 'abnormal proteins' linked to mad cow disease"

Since GcMAF is made from human blood in Europe, I would be worried about the Mad Cow Disease when deciding on GcMAF. That plus reports from most people here that it may not even work.

makingitpossible
Posts: 1260
Joined: Mon Nov 12, 2012 10:25 am

Re: GcMAF

Postby makingitpossible » Sat Jun 07, 2014 11:04 am

Thanks Fatherof2!

TamiW
Posts: 3855
Joined: Fri Feb 25, 2005 12:46 pm

Re: GcMAF

Postby TamiW » Tue Jul 01, 2014 9:52 pm

My experience with BRAVO probiotic: My son, my daughter and I tried Bravo probiotics samples at AutismOne.
My daughter had a stomachache on the drive to Chicago (3 hour drive) and within a few minutes of eating the probiotic, she said her stomach ache completely disappeared.
My son is doing really well- so I didn't expect to notice anything, but he had this 'moment' where he became a social butterfly. He does well socially but certainly is more reserved with people he does not know. He's not one to go up to a stranger and initiate a conversation about something like soup. However shortly after his Bravo probiotic, he did. We were at lunch and he just started to talk to this lady about the soup and stood there for quite a while fully engaged. He hated the taste of Bravo (I thought it was good) - he's not a fan of any type of yogurt, especially plain and let the researcher know. :oops: But this is something I'm going to try to get at some point. He's no longer sensitive to casein so that is not an issue - for those who are, it does need to be made with animal milk, they confirmed. I didn't love their answer on how to make it 'casein free' "by skimming off the fat off the top" at home.
Tami

Leo
Posts: 187
Joined: Fri Jul 19, 2013 2:50 pm

Re: GcMAF

Postby Leo » Mon Jul 07, 2014 5:08 pm

I think GCMAF in bravo is bacterial origin, its not a blood product
iHerbs Referral Code - ZHK716
$5 off order < $40,$10 off on orde > $40

kulkulkan
Posts: 2075
Joined: Tue Mar 13, 2012 1:37 pm

Re: GcMAF

Postby kulkulkan » Mon Jul 07, 2014 5:18 pm

Bravo also has a quick start version which comes in 3 month supply and slightly cheaper. I understand that the preparation is simpler (don't need colostrum). May give that a try as our son doesn't appear to be as sensitive to casein as he used to be.

andyseattle
Posts: 151
Joined: Wed Jan 29, 2014 4:20 am

Re: GcMAF

Postby andyseattle » Tue Jul 08, 2014 3:51 am

After , I read 6 pages.
So, there is NO fully recover Autism from GcMAF yet?

It will be so generous if
someone could please share more experiences.
because, I'm thinking to start it on my son next month too.

kulkulkan
Posts: 2075
Joined: Tue Mar 13, 2012 1:37 pm

Re: GcMAF

Postby kulkulkan » Tue Jul 08, 2014 11:42 am

andyseattle wrote:After , I read 6 pages.
So, there is NO fully recover Autism from GcMAF yet?

It will be so generous if
someone could please share more experiences.
because, I'm thinking to start it on my son next month too.


Even without any specific intervention up to 20% of the children may lose diagnosis and have optimal outcome (i.e. recovered). So I would discount any claim of "recovery" whether from GcMAF or any other treatment unless I see it first hand - coincidentally GcMAF claim is 20% recovery rate but I think that is just marketing spin. The real question is whether it can help, or does nothing, or worse, can it cause any harm and that is what you need to research and get comfortable with. I am comfortable with trying Bravo as a probiotic drink (with some MAF) regardless of efficacy but not GcMAF shots.


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