Guest guest Posted May 18, 2006 Report Share Posted May 18, 2006 Hi , I was a bit afraid that this might happen. Sorry about that. I'm in the middle of writing a document that outlines a couple of paths that one can take to get started with antivirals. Right now we're in the middle of what I would call some " green light thinking " on the underlying mechanisms of antiviral therapy based on some of the natural products that we are beginning to see good things from. A Brief Overview We started the group in November of 2005 and it is the third fastest growing autism group started on in 2005. The top two are Kirby's Evidence of Harm, and Dr. McCandless' Autism_LDN group. I was asked by parents to start this group after the LA DAN! Conference when I presented antiviral therapies at the DAN!, and presented videos at the Physician's Training and the Nurses Training. I also presented our group data on both antiviral therapy and Nasal MB12 at the recent DAN! Think Tank in Washington. I am not a doctor. I am a parent of a child who recovered on Valtrex and I am an adult with ADHD and IBS that I learned to manage with methylcobalamin nasal spray. I am also the producer www.recoveryvideos.com which includes 26 public videos showing recoveries of children and adults from autism and chronic illness. I own two private schools that include special needs children in the typical classroom and use simple health oriented diets and natural methods to recover children from chronic illness and to help typical children grow up healthy, alert, and productive. Lastly, I am the Co-Chairman of Hand in Hand Child and Family Development Center in Encino, CA, a Regional Center Provider of Speech, OT, PT, and behavioral therapies. Prior to my son being ill, my background was in software and technology. In all of my positions I DO NOT TAKE ANY MONEY FROM ANYONE regarding my work in autism and chronic health issues. My school collects tuition from government funded families and a low fee for school tuition for paying clients, but no family with autism is charged any more than a typical family (and families with autism have free access to GF/CF and SCD diets at the school and many other services) and no family outside of my school is charged anything for my work. I do not do private consulting for a fee. I also do not receive any revenue from any company or individual for referrals. I have made a conscious decision not to take money from anyone affected by autism or chronic illness so there is not any perceived conflict of interest in my work and the greatest number of people can learn from what we do. About The Group - Fast Forwarding to Today Since we know a little about how the natural products work, we are able to start speculating about some of the underpinnings of our kids particular impairments.... but this is really a preliminary discussion, and at this point we probably know just enough to talk out loud with half of what we say being inaccurate.... it's just brainstorming, but I think it's a very important discussion. It's how many of us learn. It's how discoveries are made IMO. These types of open discussions don't always take place in the medical community, IMO, because of the fear of a doctor or researcher looking silly or stupid. We, on the other hand are silly and stupid more often, but in the midst of that we seem to make discoveries before some others. That said, there are really four major elements to this group and when you read a post you'll likely see one or more of these elements in it: 1. Brainstorming and Research - Folks who " talk out loud " about ideas, research, and publications. 2. Antiviral trials and experiences - Parents who try an antiviral approach and share their experience. 3. Methylcobalamin trials and experiences - Parents who try MB12 Nasal Spray (or shots or other alternatives) and talk about their experience. 4. Other related research, trials, and experiences. We have sort of lumped the 4 together in one group because they are what helped recover both my son and I (and now many others) from autism and ADHD, so they have become my passions. That said, I also believe they are connected together and are two of the least publicized and effective therapies for autism and chronic illness. The group seems to work in waves. Sometimes members are sharing nothing but their trial experience like, " I just started _____ and here is what happened.. " or " My child is doing amazing and I've been doing this____ " In the last few weeks, we've seen more brainstorming than anything, so for someone coming in for the first time looking for a place to start, the group doesn't appear that accessible, but it is. You just need to do what you did, which is say, " Nice conversation folks, but where do I begin? " The recent brainstorming and research about why some natural antivirals are working and what other natural products may work. Most of us have the public or private desire not to use medicine if we don't have to for one of possibly many reasons... money, possible side effects, possibly just not wanting to invest in the drug companies, the challenge to get a script from a doctor (which has its pros and cons, and I'm not " anti-doctor " by any means... and " anti-unevolved doctor " ), or some people just live in areas where some medicines are just not readily available. My view about this has changed a bit. I look at naturals and medicines and choose what is the most effective without bias either way (as long as they are safe). I am actually a bit biased towards natural, although you may not notice that since I often advocate for a medicine in antiviral therapy if I feel it is the best option. I personally don't focus my first priority on costs. I care more about what works best regardless of where it comes from. Some more recent members may be more biased towards naturals, while other folks that have been here longer have been focusing on Valtrex. Some of the Valtrex users have already have recovered children and no longer consistently post. (Some of those folks you can read about in the FILES section of our group under Valtrex posts.) These mixes of people on the list make the discussion more rich and interesting, and ultimately challenges all of us to continue to learn. Most of us here respect both types of therapies. In time we'll learn more. The question of what to start with and what to introduce next is still mostly theoretical at this point. One of my goals is to coordinate a clinical study comparing Valtrex along with the natural therapies to see what works best, in what order, and with whom. I may get a little snappy here and there to try to challenge our thinking, or to question the safety of a new idea or therapy, or to just help keep us from going too far off from the focus of the group at times. Looking closely, some newer folks are also still getting comfortable with me after I came back from a four week leave. To some I may appear new to the group, but I really enjoy the discussion and I'm learning everyday and I'm enjoying myself. I think the recent discussions are really important. The group is developing new life with new individuals that are IMO, parental leaders in new ideas and creative thinking, and it is changing the dynamics of the group in a good way. That said, let me see if I can summarize where I would begin without taking up too much of your time... Where To Begin Just about everything we are talking about regarding antivirals has the same basic, successful formula Taking care of the gut (diet and an antifungal strategy) + Antivirals (medicine or naturals) = benefits for many children Mostly what we banter about is different strategies that might work differently and possibly (hopefully) better. In the end, IMO, this will likely turn out to be like cancer treatment (which unfortunately I learned a lot about this month), where there are different flavors of treatment that will work on different children. Everyone here respects the different approaches we are talking about, so we are just discussing different agents (medicine or natural) and how they may be working for our kids. Ultimately, most of these approaches are very safe and relatively proven to be non-invasive. I strongly believe that antiviral therapy is safer than chelation... and chelation, for the most part, has a pretty safe track record, although I had my experience of feeling like I wanted to die when I did it as a test to see how it would feel before I decided not to do it to my son, but we'll talk about that another time. How to get started A simple strategy is to first decision about your antifungal strategy. Personally I believe the safest, simplest and most effective agents for this is using oral Diflucan, or Nizoral (and I sometimes mention amphotericin . They are very effective and they have a proven track record of safety to not be relatively non-toxic. Others opt to try naturals and some have success with products like Candex, or Caprilic Acid, Biotin, Grape Seed Extract (GSE) and a growing list of things that I will put in my introduction letter I will hopefully finish this weekend. Personally, if I was just getting started today, based on my personal philosophy of going what is most effective and not caring what the administration was, meaning I don't mind using a medicine as long as it's one that is science based, safe, proven, non-toxic, and effective, then I would start with either Diflucan or Nizoral (or my third choice Amphotericin . Additionally, there is recent research that shows that these medicines are helping a large set of our kids who have testosterone issues, and I won't get into the details in this post, but normalizing testosterone seems to be a major factor in lowering bacteria levels, raising glutathione levels and this activity may be a very important element of a good portion of our children's recovery. So bascially, IMO, you are safely covering two bases with one therapy. If you are one of those folks who wants to go all natural, and don't mind the risk that some of the naturals may not work as well for your child, then exploring the list of naturals may make sense to you. I feel we will come up with a list of naturals to use and figure out what works best for what child, but right now it's a bit of a trial and error scenario, but an important one because if we can figure it out it will save a lot of people money and headaches in dealing with doctors... Rx's etc. But, again... today if I was just getting started I would go with Diflucan or Nizoral. Next is the antiviral agent. After a lot of thinking... today I believe the place to start if you can afford it or have insurance is Valtrex. While we have seen gains with natural agents, we do not have more than handful of possible recoveries from them yet. Yes, we have a growing list of improvements, but comparatively I have 50 pages of children who have greatly improved or recovered from the use of Valtex. My son being one of them. He continually improved on Valtrex and was off the spectrum in a matter of months. He was on Valtrex for a total of 9 months and has been free of any biomedical therapies for more than year now. And this was a metals toxic child with physical and behavioral impairments, so he not only recovered virally but he also detoxed and cleared his gut issues in a more natural way, through antiviral therapy. In the last few months we've confirmed that there is a metals dumping effect with Valtrex for at least some people, my son was one, we have test results of before and after on others. We also know that Valtrex modulated adenosine. Many of our kids have high or low adenosine levels and prior to Dr. Sid Baker publishing his study results about acyclovir and adenosine, we didn't have another therapy for this. Valtrex quickly converts into acyclovir, but the added values of Valtrex is that it is less toxic, more bioavailable and it crosses the blood brain barrier, which is where our kids often have inflammation, (according to the 's Hopkins study that came out last year and also mentioned recently in Time Magazine). Both Valtrex and the Naturals often result in what we call a healing-regression, which is a period of time when the child is healing but looks like they are regressing. It is similar to a die off effect, but at the same time we believe there is metals detox going on as well as immune system and metabolic restoration from the methylation changes and the lessening of the viral load. There also seems to be an increase in fungus during antiviral therapy and initially there is probably a kill off of this new fungus. The process is often greatly lessened by having the antifungal in place prior to starting the antiviral. This healing- regression typically lasts 20 to 40 days. Some folks also report never see a regression and only see gains... A SMALLER MINORITY of folks experience the regression for more than 40 days and folks in that situation often go to a lower dosage, take a break and return later, or possibly the best option move to another agent like Famvir or Acyclovir which seem to work more slowly and then try Valtrex again after a period of time. We've seen some nice posts from parents who worked through really difficult cases with this strategy and I applaud them. What you don't want to IMO, is try an agent like Famvir or Acyclovir first, because you may trigger the virus to mutate or build a bit of resistance (this is just my observation). Lastly, some of these folks who have had a healing regression longer than 40 days might move off of Valtrex at that point, switch to an Natural like OLE or Virastop for while and then move back to Valtrex (or try both) if their child doesn't have a full recovery with the Natural (which I have not seen a report of a recovery from a natural yet... although we've seen nice improvements). After the healing-regression and the typical gains we see thereafter, if you see consistent gains that look like you are recovery bound, like in the case of my son, I would not change anything. If you see gains and then a plateau, I would consider ADDING a natural like OLE. Then if you continue to see gains I would not change anything or I might try adding Virastop and seeing what happens. One you have this part of your viral strategy under control, the next step would be to consider therapies that flush out Measles virus, which include a two day High Dose Vitamin A trial, and then Lauricidin. The group (and hopefully your good DAN! doc) will help you with the nuances of each strategy, but I think this is a good framework to start with. I'm not a doctor. I'm not a PhD., but I do have the unique perspective of having the position of reading the thousands of posts and hundreds of trials from this group, and also of having a recovered child. Thank you for your question. It helped me clear up some of my thinking and I'll use some of this post in my framework for a " How to get started " document. Welcome, good luck, and keep us posted on your progress and questions. All the best, - Stan > > > > > > Stan, > > > > > > I'm not suggesting all antivirals at once. But I am suggesting > (as > > > Andy Cutler has suggested, and I respect his opinion enormously) > > > that antivirals work by different mechanisms, and that fact can > be > > > used to our benefit. Also, most of our kids would seem to have > more > > > than one virus at work in them, perhaps even viruses we haven't > > > identified as problematic (our bodies are absolutely filled with > > > viruses--the vast majority cause no problems whatsoever). While > > > researching this, I spoke to a number of parents who had tried > > > either Valtrex or the other one I can never remember how to > spell, > > > but with little result. > > > > > > All these things lead me to believe that for a good number of our > > > kids, a multiple approach is best. And not one after another, or > in > > > rotation--which could lead to resistance--but all at once. > Starting > > > one at a time, of course, just adding them in. I chose the ones > I > > > chose based on what they are supposed to do. VS to attack all > > > viruses through digesting them. Lauricidin because it can work > on > > > measles, which I believe to be a problem. And OLE, because it > uses > > > a different mechanism again, and had been used successfully by > > > people like Dana for a very long time. Sambucol because it seems > to > > > do well with flu viruses, which change all the time. > > > > > > Anita > Quote Link to comment Share on other sites More sharing options...
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