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Treating Autism Conference, anyone attending? (GcMAF, etc.)

Discussion in 'GcMAF' started by Sushi, Sep 7, 2012.

  1. natasa778

    natasa778 Senior Member

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    London UK
  2. Daffodil

    Daffodil Senior Member

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  3. Trevor Banks

    Trevor Banks

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    Hi all ...... very sorry for the delays but had technical problems then travelling but finally we are there:

    Dr Bradstreet - full version & extract can be found in this new thread:
    http://forums.phoenixrising.me/inde...g-autism-conference-9th-september-2012.19569/

    Prof De Meirleir describes the use of GcMAF in treating CFS and autism at the Treating Autism Conference 9th September 2012 (with subtitles)
    http://forums.phoenixrising.me/index.php?threads/prof-de-meirleir-gcmaf-treating-cfs.19568/

    Enjoy!!!
    Madison likes this.
  4. Daffodil

    Daffodil Senior Member

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    thank you!!!!!!
    Madison likes this.
  5. Hi,

    I do not come on this site regularly b/c my son has moderate level autism and apraxia of speech. He has a few other diagnosed conditions as well.

    My son has received 4 injections of GcMAF from Dr. Bradstreet. Dr. Bradstreet does order from the lab in the UK b/c he has the best results with the GcMAF from that lab. I am sure that some people on this site have had good responses to the GcMAF from other labs.

    I tried ordering GcMAF directly from the UK lab, hoping to save money. The GcMAF that I received was most likely still potent, even thought it had warmed to a temperature that was likely higher than our normal body temperature(s). My "experiment" with doing the undiluted injections with the GcMAF from the UK, proved to be a nightmare for my son, and in turn, for my husband and myself, since our son is dependent on us and mostly non-verbal. For kids who are non-verbal or have verbal expression issues, the pain is displayed in bad behavior, non-compliance, screaming and wailing, self-injury, and them needing you to be with them at ALL times.

    Dr. Bradstreet has explained to me that both autism patients and people who have M.E. should do the GcMAF injections at a very low, DILUTED dose over a long time period. The main problem is that the large dose of concentrated GcMAF causes a LOT of inflammation in the body, and people who have autism and/or CFID/ME do not have bodies that can handle the inflammation. I have read, on this site, about some of you who have had side effects like severe back pain, severe headaches, and severe burning sensations in your bodies during GcMAF treatments. Your posts have greatly helped me to understand the pain that my son must have been going through during the time that I was giving him the concentrated shots.

    (I think that the concentrated GcMAF may have helped my son in some way...he DID have an immune response(s), but I never noticed any improvement in his "autism" symptoms. From my understanding, the larger doses, with a more concentrated level of GcMAF, are more suitable for people who have cancer. I am NOT an expert on GcMAF or cancer, but this is how I am interpreting the things that I have read or have been told by Dr. Bradstreet and others.)

    In Dr. Bradstreet's paperwork, he states that you can order directly from the UK lab if you would like. I strongly advise anyone with autism or CFID/ME NOT to do this. I have listed the medical reasons above. Another reason that it is best for people who are ill, or are caregivers of ill children or adults, to have a mediator between the people who work at the UK lab and us. If you would like to know more about my own interactions directly with the UK lab, I will be happy to communicate about this privately with you.

    Dr. Bradstreet does treat people who have conditions other than autism. If you have a physician whom you are working with in the U.S., you should be able to do phone consults with Dr. Bradstreet only. I have not had to go to his office to receive the GcMAF shots for my 6 y/o. I would say that Dr. Bradstreet has a fairly good bedside manner; I have only spoken with him over the phone twice, so I am still getting to know him. (I am sure that M.E. patients have their ultra-sensitive "antenna" up, must like autism moms do. There are some really rude, arrogant MDs out there who think they know everything, but they actually know nothing.)

    With the 1st two GcMAF shots (from Bradstreet), my son immediately experienced fatigue, some "crankiness" and a bit of tantrumming. He did fall NOT asleep though. Within 24 hours of each of the 4 shots, he has had a runny nose. With at least one of the shots, he had a low grade temp. (I did not measure his temp, but he was just warmer than usual for about an hour or less.) Other than what I have listed, there have been no horrible side effects or pain, as far as I can tell. After the last shot, which was on 9/22, C did not experience any discomfort after the injection.

    And, YES, there are improvements with the small dosages!!! The areas that my son, C, has improved in the most are self-control (behavior), attention/focus, increased expressive language, and cognition. Since he is less hyperactive, he has the ability to LISTEN and follow directions. He can also sit still for longer lengths of time. In terms of cognition, C has gone to a new level, meaning he is able to listen and have a much quicker response time to acting what has been told to him. C has also started to "kiss" me for the very first time....this is so huge to a mom. (C's "kisses" are more like blowing kisses; he did kiss me on the cheek one time though.) One year ago, C did not know how to wave (or could not make himself do the motion) at all. Now, he is waving with an open hand.

    Thank you all so much for posting about this! I have not watched the videos in full yet, but I plan to once I get the time.

    How many of you have done the lower doses of the GcMAF, if you are willing to share? I think one person on this site has done the lower doses. I am wondering if many CFID/ME patients are doing the high doses and getting the awful reaction that my son had on the higher dose.

    Also, GcMAF is fairly new to the autism community. I do not know of any other parent who is doing GcMAF with their child, but now that I am doing it with C, I have gained several new friends on Facebook who are watching my son's progress in case they decide it is a good option for their child(ren).

    Madison
  6. Forebearance

    Forebearance Senior Member

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    Thank you so much for sharing with us, Madison.
    I'm so glad your son is being helped by the GcMAF!
    I think there are many of us on this board who are doing low doses of GcMAF.

    I feel a lot of solidarity with you and your fellow autism parents.
    It seems like a great idea to check with us to find out what your son might be feeling.

    Forebearance
  7. Daffodil

    Daffodil Senior Member

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    Hi Madison, may i ask what exactly a very low dose would be?
    Thank you!
  8. risteski

    risteski

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    Hi Madison,

    I'd like to know more about your experience with the UK lab that sells GcMAF. I'm in the process of ordering right now. Can you please write me a PM?

    Cheers,
    Kristijan


  9. Hi Everyone,

    I am SO sorry that I have not replied to anyone since my last post last year.

    A quick update on my son, who will turn 7 in mid-August, is that GcMAF has changed our lives! My son is a different person than he used to be. There must have been viruses in his brain, and the GcMAF "ate those up". His expressive language has dramtically increased, as well as his understanding of the things that go on around him. He is becoming more and more neurotypical :). I am now able to discipline him (with "time outs", which I choose to call "quiet time in your room") like I would a nerurotypical child. He is understanding consequences better. He is naming objects. He is working on phonics and putting a few words together. He is able to follow directions. He is becoming a real person, instead of a non-verbal kid who runs around, obessing on his train sets, moaning and yelling. He is intentional in his actions. He is likely going to have to stay on the GcMAF indefinitely. I believe he started at a .1 dose, and then we raised the amount, and then the concentraion. Dr. Bradstreet's nurse mixes the GcMAF with saline and sends prefilled syringes to us, so I am "iffy" on the exact amount that my son receives. I estimate that the GcMAF, including MD consults and shipping charges, is about $100 per week.

    Within the biomedica/medical autism community, there is a general teaching/belief that you must heal "the gut", and then the autism will heal. Surprisingly, this has not been the case with C. His autistic symptoms are resolving, but his gut is a "trainwreck". (Dr. Bradstreet's description. We did an OAT test with Great Plains lab....C has a lot of bad bacteria and very little good bad bacteria in his gut. OAT tests is for organic acids. I know of one other mom in our situation. She will be starting with the yogurt as well, with her son.) I will be starting Bravo Probiotics with C in the near future. Dr. Bradstreet told me that the yogurt does not contain GcMAF, but it contains a substance similar to GcMAF. It actually has synbiotics rather than probiotics. C has oral aversions, so I will need to syringe it into his mouth or even try to give him an enema with the yogurt. (I hope to write a separate post about this, especially since I have questions.)

    After 8 injections, the GcMAF turned my son's diarrhea to solid stools. (He has had daily, chonic diarhhea since he was 10-11 months old. The diarrhea began after C caught a cold from me. Must have been some type of virus. C has never received a childhood vaccination, but I did have a RhoGAM shot while pregnant, and my labor was induced with Pitocin, which is made from a cow. ) C had to be hosptialized for probable pneumonia in December. He was on IV antibiotics, which brought the diarrhea back. We then started him on prescription enzymes (Zenpep 10), which also seemed to contribute to the diarrhea. By using the Bravo yogurt, Dr. B hopes to "transplant" the ecosystem in C's intestines. Dr. B had talked about us going to Panama for a fecal transplant, but he has found that it costs thousands of dollars to find a good donor, and after spending all of that money, you may not end up with any donor.

    With the GcMAF injections, we are on the same dose, but we are doing a twice a week protocol. Mothers told Dr. B that the GcMAF seemed to "wear off" after 5 days, so that is why Dr. B started a new protocol. (I would like to do an every 5 days schedule to save money, but I forgot to ask Dr. B about that the last time that I spoke with him.)

    C has been on GcMAF injections since Sept. 1, 2012. Dr. Antonucci (Italy) and Dr. Bradstreet both spoke at Autism One (conference) in Chicago in May. In both of their practices, 75% of their patients (autism) are having to stay on the GcMAF indefinitely, or they regress. They are doing research into a cannibinoid receptor in the liver, which seems to be causing problems with the GcMAF making permanent changes in children's bodies.

    I guess I will just post the issues that I have had with the manager of the lab in the UK publicly. As I post this though, please know that I know of other parents who are ordering directly from the UK lab and having no problems with a person with the initials DN. (The manager and, I think, owner, of the lab.)

    I ordered the GcMAF directly from England around July 1st of 2012. I was promised by a woman named Ann that the GcMAF would be sent via 2 day shipping. It had been near 100 degrees F in the Chicago area at the time. Since July 4th is not a holiday in the UK, I hoped that I could avoid problems with delayed shipping. I received the small vial of GcMAF in 3 days. This is just my opinion, but I viewed the packaging as very unprofessional and amateurish. The GcMAF bottle was hot to the touch. On the paperwork, it was written that Ann had sent the GcMAF (deliberately) via 3 day shipping, when she promised that I would recieve 2 day shipping. I did a search for GcMAF, and PR came up in my search. I posted on here to ask questions about the quality of the GcMAF that I received. (I did not know that this part of the board was public.) DN must have done a search for his name and read my post. I received at least two harassing emails from him (b/c I made negative comments about his company and his GcMAF publicly on the Internet). He called me a lot of names, including a liar. He also threatened me with "libel" in an email. From that experience, I am personally scared of the man. That is just my individual experience though. I did dispute the charges on my credit card, but DN won, and I ended up paying $840 for GcMAF that did not help C's autism. It was not the product that was faulty, I don't think. Dr. B has said that the GcMAF retains much of its potency even if it becomes hot. For me, it works best for me to go through an MD. Not just for the guidance, but also to have a mediator between me and Mr. DN.

    Back to the subject of this post.....I now know many autism parents who are using GcMAF. Some order straight from England, especially if they do not live in the U.S.. Several others are going through Dr. Bradstreet. In the Chicago area, I know of a few parents who take their children up to Dr. Greg Brown MD, who has a clinic near Milwaukee. (His clinic is not devoted solely to autism.) I think that Dr. Brown is getting his GcMAF from KDM, b/c one parent told me that he orders it from Brussels. Most people who are going through Dr. Bradstreet are having good results with the GcMAF that he gets from the UK lab. He adjusts the dose specifially for each patient, depending on how ill and how sensitive their bodies are.

    I have not been on PR for a while, so I am sorry if I posted about anything that has already been discussed. I need to find a chunk of time to read over all of the threads. I have told several other autism parents about PR, since all of you can verbalize some of the things that autistic non-verbal children cannot verbalize. I wish all of you had never gotten sick, but you are a huge blessing for those of us who have kids who can't talk, or have limited speech. (Thank you.) I do feel so much sadness for what you all have or are going though. I have some health problems of my own, but I do not have ME/CFID.

    Madison
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  10. GcMAF Australia

    GcMAF Australia Senior Member

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    Thanks for this Madison.
    I remember when you first came on this site :)
    I am so glad that it has helped you
    I have been conferring with the Audtralian Government in an attempt to get this into Australia
    All the best :)
    GcMAF
    Madison likes this.
  11. GcMAF Australia

    GcMAF Australia Senior Member

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    Also Madison
    Many people with autism have tested positive for Lyme.
    Many Australian children with autism have been diagnosed with Lyme in the last 8 months
    there is a high incidence of autism in the Lyme groups
    Madison likes this.
  12. GcMAF Australia

    GcMAF Australia Senior Member

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    hi madison
    I have just heard that ILIADS has found that 40% of children with ADHD have Lyme
    :)
    Madison likes this.
  13. Hi,

    We did Zyto testing last week, and Lyme did show up, but C does not have full fledged Lyme (I don't think). My husband actually pulled, what we think was a tick, out of C's skin earlier this summer. We had to pull the tick out, but I think C was just exposed, but did not acquire full Lyme. I have a good friend who has a daughter with learning disabilities who was recently dx'd with Lyme. The mom was dx'd with Lyme as well, so she must have given it to her daughter while pregnant. My friend's other child has Down's Syndrome and autism, but I am wonder if he really has DS and Lyme.

    My son also has Cerebral Folate Deficiency Syndrome, diagnosed via anti-bodie in the blood and low folinic acid levels in his CSF. (He had a lumber puncture with Dr. Richard Frye, who is now at Arkansas Chidlren's Hospital.) I think that the prescription level folinic acid (we use Leucovorin) is helping him in addition to the GcMAF shots.

    I have a friend who is 54 y/o. (Hopefully, I have not written about this before. I probably have.) She has had a "mysterious illness" since she was 49. She does not have severe fatigue, but she has had a lot of odd symptoms. Her MDs, who treat adults, have given her a very hard time. Her husband thinks that she has been making her symptoms up. (They do not have any children.) My friend recently told me that she believes that the CFD Syndrome has been one of the biggest factors in her illness. (She has the genetic form. I do not know why it started expressing itself around peri-menopause age, but hormones cause crazy things to happen. For ASD kids, it happens during puberty.) My friend has started going to conference like Autism One, just to go to the presentations that discuss what is affecting her. She also is able to talk a bit with MDs like Dr. Frye, Dr. Usman (DAN! autism MD), and Dr. Rossignol. It has helped her immensly to speak with these MDs. She is avoiding dairy and has finally gotten a prescription for Leucovorin. It is just really sad that MDs who treat adults are not the ones who have helped her the most in learning about her symptoms and illness. When I last saw my friend, she looked amazing. She has gray hair, but if she colored her hair, she could pass for 40 y/o or younger. (This may partly be b/c she doesn't have children...I think they can age you b/c of the stress.)

    Dr. Usman helped me to understand the OAT results much better than Dr. Bradstreet did. (I only do 15 minute phone consults with Dr. Bradstreet. I do in person visits with C with Dr. Usman.) The OAT results showed that he has a LOT of yeast, clostridia, as well as the bad microbes/bacteria. We are starting 3 months of Diflucan and one month of Vanco. The Vanco is in prep for the Bravo Yogurt. C cannot do diet changes because of SEVERE oral aversions.

    I realize that some of what I have posted fits in different categories/threads on this site. Thank you all of your input and for reading my posts.

    Madison
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  14. GcMAF Australia

    GcMAF Australia Senior Member

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    Thank you Madison
    GcMAF
    Madison likes this.
  15. ukxmrv

    ukxmrv Senior Member

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    Madison, we are the ones who should thanking you. I really do appreciate that you would take the time (must be very hard with your son to do that) and update us of his progress.
    So very glad that your son and others around you are benefitting from treatment. It's so hard to pit together all the pieces and your friends are llucky to have you to talk through this all with.
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