The Moment We Become Credible
By Kent Heckenlively, Esq.
This web-site has abundantly recounted stories from our community of how the affliction of our children and subsequent efforts to determine what happened to them have earned us the ridicule of the medical community, contempt of the media, and perhaps most surprisingly, a change in attitude from friends and family about our grasp of reality.
I confess this change in attitude hit me with great force. People had always relied on me for my good sense and intelligence. When I graduated from high school my mother gave me a large wooden owl because she thought it symbolized my wisdom. In college I was the school's Rhodes scholar candidate and headed up our delegation to the Model United Nations at Harvard University. In law school I was a writer and editor for the law review. After I got married my father-in-law referred to me as his "own personal Google" for my ability to recall anything from historical and political events to the names of actors from old movies.
But lately I've noticed a new phenomenon. I'm becoming credible again. People value what I have to say.
I noticed it first during this past school year in the staff lunchroom. The issue of vaccines and autism came up and I'd held forth with what I hoped was an abridged discussion of this vast topic when one of the teachers turned to me and said, "When I have kids I'm going to talk to you about what to do." I was momentarily taken aback by this sentiment. I felt it had been a long time since anybody outside the autism bubble was so interested in what I had to say.
I noticed it a few weeks later with the wife of my son's boy scout troop leader. We'd had some discussions before about autism, and she had a great interest in the subject as her own son had shown signs of autism and they endured two years of intensive therapy with him. He still seems to have some Asperger's-like traits, but from my view is essentially indistinguishable from his peers. Whenever she sees me she asks what's new and I inevitably end up sharing the latest research with her and my thoughts on it.
About a month ago my father said I should talk to a friend of his who is a psychiatrist. The psychiatrist has a niece with autism and my dad figured we should compare notes. My dad thought very highly of his friend, telling me the psychiatrist was one of the smartest people he'd ever come across. "He's got like seventeen degrees," my father said, "but he's still a guy you can talk to." So I called this well-credentialed psychiatrist, laid out the issues, the controversies medical science isn't investigating, what I think still remains unknown, and he was very attentive. He asked good questions, shared stories from his own practice of what he views as the failure of the medical profession to address complicated issues like chronic fatigue syndrome and autism, and generally validated everything I had to say.
Frankly, I'm not sure if I felt better or worse after we talked. I think in the back of my mind I often have this irrational hope that maybe I've got this all wrong. Is it easier to live in a world where you're practically the only sane one, or is it more comforting to think you've got it all wrong and the rest of the medical and pharmaceutical world is doing its best to help you? Personally, fighting for my daughter is a lot more difficult than just giving up and leaving it in the hands of the medical community. But I would have no such reprieve. When the psychiatrist talked to my father again he said, "I think Kent knows as much about autism as anybody in the country." Crap, that means I still have to keep working because I don't know anywhere near enough.
Which brings me to last week's meeting with my daughter's neurologist. (My daughter has seizures in addition to her autism.) Our daughter's neurologist is head of neurology for the northern California division of our system of hospitals and as smart and blunt as they come. I've laid out the vaccine theory of autism and neurological injury to her in the past and she's been non-committal, but often says, "I'm here to help you with anything in traditional medicine." I've also consulted her on the safety of various non-traditional bio-medical interventions. It may come as a surprise to some of the detractors of our community, but I have never tried a therapy with my daughter for which our neurologist had safety concerns.
"My husband has something he wants to share with you," my wife told the neurologist after we'd gone through the standard appointment.
"Good!" she said with some relief in her voice. "Because I'd been sitting here thinking about what I could offer you and I couldn't come up with anything. There's a new seizure drug on the market that I could recommend, but it comes with good news and bad news. The good news is that it doesn't have many side-effects. The bad news is it doesn't seem to work on many of my patients."
I nervously plunged into what I hoped would be a fruitful discussion. "We recently had our daughter tested for this newly-discovered retrovirus and she was positive for it," I said, handing her a small stack of papers. Included in the stack was an October 8, 2009 article from the journal Science about the virus as well as several articles from Amy Dockser Marcus of The Wall Street Journal detailing the latest findings in the field. (For reasons of avoiding internet searches, in your comments please refer to this retrovirus as "#3".)
"How do you treat it?" the neurologist asked me.
"It's unclear at the moment," I replied. "There are several people working on it, but they haven't settled on an approach. The good thing is that many drugs which were previously approved for HIV-AIDS may work on it and since it's a simpler virus than HIV it should theoretically be easier to defeat. There are other approaches, based on improving the body's immune system to fight off the virus." I added all the usual caveats that more work remained to be done, that there was the issue of whether this was the cause of my daughter's problems, or just a harmless passenger virus, but the neurologist gave me a look which said that uncertainty was part of the medical process.
"Let me pass this over to infectious disease and see what they can make of it," she said after I'd finished. "And if your people come up with a treatment protocol, let me know and we'll see how we can help."
As we walked out of the neurologist's office I couldn't help thinking, "I've become credible, again." We're in the midst of a war for the future of our children, but inroads are being made. I don't claim to have any answers, just questions. However, it's nice to feel that at least in my small part of the world I'm working hand-in-hand with the medical profession, even if I'm the senior member of this collaboration.
Have you noticed that YOU are becoming more credible to the people in your life?
Kent Heckenlively is Contributing Editor to Age of Autism
Kent; just got an alert on our little pathogen.
The NIH is changing the name of our little pathogen from mouse to human.
If I was not so paranoid (use to not be, was so trusting) I would believe them. But now I figure this whole thing of holding the information for this length of time was just so they could change the name just so as to cover their vaccine yielding butts.
Posted by: Benedetta | August 19, 2010 at 11:02 PM
Another thing that I cannot get to fit.
My duaghter that had sure enough Kawasaki's and had lingering health problems of mood swings, rage, muscle stiffness, GI problems, depression, and all that finally improved in her 20's. It took three Hep shots at age 26 to start her down that road of muscle pain, stiffness, GI problems all over again. It took a flu shot last fall to really put her down.
So either these vaccines caused the T and the B's to mulitlpy thus multiplying the #3 too or they too are contaminated.
My kids had no probems with the DT shots, no problems with the MMR shots, no problems with the Hib - not even a fever????
Does not these vaccines cause mulitication of the T and the B cells????
Posted by: Benedetta | July 29, 2010 at 10:20 AM
No, it is not Lyme.
Yes the symptoms that were described by the doctor in your second link fits my husband exactly.
However:
Sick husband has been tested 10 times or more for Lyme. Also he has had during this time of illness an intravenous antibiotic for 21 days, helped nothing.
But he does have for sure an acquired mitochondria dysfunction.
He had plenty of tetanus shots growing up and through his teen years. One shot every two or three years.
In his 20's he went for 7 or 8 years before he received another tetanus shot from his work. He seized all night.
He was fine after that until he was 34 and he received another tetanus shot.
Our twenties and early thirties - those were the days of total confusion and terror. Not the bliss of raising a family in the rich, free country of America. It was between the ages of 25-32 years old that our kids were reacting to their DPT shots with high fevers, strokes, seizures, and atypical Kawasaki's.
It looks like to me that the vaccine supply was contaminated.
Posted by: Benedetta | July 29, 2010 at 10:11 AM
Then what happens if these kids get a wild virus or strep at school?
Does T and B cells come to the body's defense for strep the same as it does for a vaccine?
Does this mean that regression of my son would have happened anyway if not for the three DPT shots that he reacted too.
He had plenty of colds, and ohhh my-- plenty of ear infections. He was sick by he never reacted the way he reacted to those vaccines.
What is the answer to this question that puzzles me?
He had strep more than unusal - growing up, it makes sense that he was sicker than normal kids because his immune system was not working properly, but would not him trying to fight off those dieseaee also make him regress like the DPT - if he was making T and B's to fight them off?
So does the immune system respond differently toward a vaccine as compared to something they pick up around the schools?
Posted by: Benedetta | July 29, 2010 at 09:24 AM
The RV does not need to contaminate the vaccine there is another explanation from J.Mikovits.
"This might even explain why vaccines would lead to autism in some children, because these viruses live and divide and grow in lymphocytes -- the immune response cells, the B and the T cells. So when you give a vaccine, you send your B and T cells in your immune system into overdrive. That's its job. Well, if you are harboring one virus, and you replicate it a whole bunch, you've now broken the balance between the immune response and the virus. So you have had the underlying virus, and then amplified it with that vaccine, and then set off the disease, such that your immune system could no longer control other infections, and created an immune deficiency."
http://www.huffingtonpost.com/david-kirby/is-autism-associated-with_b_316986.html
However this may be only part of the puzzle and parents of Autistic children would find some of the videos posted on my blog very interesting http://lookingatlyme.blogspot.com/search?q=Autism
Several doctors are now finding a high percentage of children with Autism to be infected with Lyme disease and responding to appropriate treatment. The Lyme doctors already recognise that the RV may be just another of the many co infections virus and bacterial.
See Lyme induced Autism http://www.lymeinducedautism.com/
Kent well done for keeping up your advacacy when the ground swell is large enough our Health Authorities will have to listen.
Medicine currently uses mainly band aide treatments because of the top 20 illnesses they only know the cause of two HIV and H. Pylori. Instead of suppressing the immune system they may be should be supporting it.
Posted by: Joanne | July 29, 2010 at 03:39 AM
Im getting more credible by the day. The only real card the doctors in India had to cling onto was that autism was genetic. When your neighbour's child, your colleague's child have autism and there are autistic kids in your child's classroom, even a person with no science background is going to become curious and wonder where on Earth it's all coming from. At that point Im the one who knows about autism because all the doctors know nothing. They weren't interested you see!
They also weren't interested in helping a young mother with a two year old child, the height of a 9 month old. She had already seen 13 doctors at the time I met her. I asked her what the doctors told her:"Well they either tell me that he is fine or they tell me that he is too short but they dont know why".She went to more doctors and finally struck gold. Her son has a well known form of dwarfism and he has been treated with growth hormone and is now a normal height. I was astonished- This means that not one of those doctors even bothered to do a Google search on dwarfism. If I had known that I would have done it myself. And the kicker to this story is that the endocrinologist who is now helping her is seeing more cases of the same syndrome (Russel-Silver) and oddly the same pattern of parents that we see in the autistic kids has emerged- The parents are often in the military, govt or are doctors (All the same people who get the highest- mercury vaccines for their kids) But as we in the autism community know very well- that must be a coincidence.
Posted by: Cherry Sperlin Misra | July 23, 2010 at 04:36 PM
Thank you for explaining this in more detail, Patron 99. All this immunizations are so complicated, so very much can and has gone wrong. Probably more than will ever be known.
Bill Gates may be rich, famous, and very idealistic, but it just goes to prove he does not have wisdom. If he was asked to step up and be first in his hair brain ideas, I am sure he would wise up, quick.
If his child was damaged he would wise up quick too.
Posted by: Benedetta | July 21, 2010 at 11:29 PM
Kent,
You've always been credible, but unbelievable. (Who would want to "believe" who/what is causing so much damage?)
Now the other side is so unbelievable to no longer be credible.
All you have is your honesty, which is the foundation of your credibility.
All the doctors have with their credentials is.....well....their credentials, not their honesty, humility, or scientifically open mind.
Kent, you are not only credible, believable, but right.
Posted by: michael framson | July 21, 2010 at 04:40 PM
I just posted this on a earlier peanut allergy article, but having read the latest comments here, I think I'll put it here as well.
This quote is from _Biohazard_ by Ken Alibek (born Alibekov) who was a big bug in Soviet biowarfare until he defected to the US in 1992:
"I have lost all sense of smell and have the broadest range of allergies of anyone I know. I can't eat butter, cheese, eggs, mayonnaise, sausages, chocolate, or candy. I swallow two or three pills of anti-allergy medicine a day--more on bad days, when my sinuses start to drain. Every morning, I rub ointment over my face, neck, and hands to give my skin the natural lubricants it has lost. The countless vaccinations I received against anthrax, plague, and tularemia weakened my resistance to disease and probably shortened my life."
Posted by: Carol | July 21, 2010 at 09:40 AM
It strikes a chord when contributors on this forum cite how wonderful and bright and "full of life" are children who are completely unvaccinated through their early growing years.
Dr. Gerhard Buchwald, a German physician lectured, testified in court, and wrote books documenting that EVERY vaccination shot carried with it a degree of mental/brain of brain damage, usually permanent.
Dr. Buchwald, born in 1920, died in 2009, saw one of his sons catastrophically deteriorate in parallel with having vaccine shots in the 1940's.
From my career in troubleshooting technology problems and a lifelong self-education in medicine, and including a stint as a U.S. patent examiner in medical art (a medical degree is not required), Dr. Buchwald makes complete sense.
Today's vaccines' toxic ingredients repeatedly injected into an infant's cardiovascular system will one day will one day be criminal - nothing other than common sense and a layman's curiosity is needed to come to this conclusion.
Posted by: davidburd | July 21, 2010 at 07:57 AM
@ Benedetta - Re: my use of the phrase “portals of disease”. Let me try to explain what I mean. It’s basically a pattern of events taking place since the advent of mass vaccination programs, exemplified by the vaccine schedules in this country and others. Specifically, there appears to be a recurring pattern of disease recurrences and outbreaks amongst the previously vaccinated population. Furthermore, there have been numerous reports of virus shedding in the vaccinated population. There have been reports of transplacental transmission. There have recently been reports of transmission of virus, e.g. vaccinia, through sexual contact with the vaccinated population. A CDC study suggests that the resurgence of whooping cough in California is due to the vaccine causing an increased and more virulent toxin.
Let’s define a portal as any point or place of entry, a doorway, gate, or entrance. Let’s define a vector as a living entity that carries a disease but doesn’t “catch” it. I view the concept of “portals of disease” as being pretty close to the antithesis of the “herd” immunity theory, or at least that was my intent. The Herd Immunity Theory is seriously flawed. Probably the best single article I’ve been able to find in support of this view is the following and I highly recommend to everyone. It’s crucial to our health that we understand this topic thoroughly. This article, and links within the article, detail why the Social Responsibility Argument is nonsense and the Vaccine Induced Herd Immunity Theory is flawed.
http://www.vaccineriskawareness.com/The-Herd-Immunity-Theory-Treating-Our-Children-Like-Cattle
http://www.vaccineriskawareness.com/Diseases-In-The-Vaccinated
http://www.vaccineriskawareness.com/Diseases-In-The-Vaccinated-Page-2
Where is “disease” really coming from? the jab? the germ? Would germs be able to set up shop and multiply without access to an inviting environment? Would germs be able to multiple as readily without weakened natural immunity?
So what do the pediatric and adult vaccination schedules do, in reality?
At the very least, the vaccine schedules provide a gateway or a portal, if you will, which opens and closes serially from cradle-to-grave by which foreign proteins, bacteria, endotoxins, viruses, retroviruses, reverse transcriptases, neurotoxic metals, preservatives, and antibiotics, can gain direct access into our flowing blood, the internal milleu of our bodies, without being subjected to the natural immune defenses found in our skin and in our gut. The vaccine schedules effectively provide a free pass to access our bodies. Inoculations, particularly with live viruses, in essence use humans as vectors.
What happens once blood flow stagnates, for example, due to the profound effect of aluminum salts upon the electrostatic potential or zeta potential of blood? Coagulation and blood clotting, ischemia, cellular anoxia, infarction, cell death, and necrosis. Immune macrophages generate inflammatory cytokines. A Schwartzman reaction or vasculitis is often involved.
What does this so-called portal theory of vaccine-associated disease require? Epidemiologic validation. Until someone convinces me otherwise, I have growing personal concern that today's vaccine schedules may actually make the heavily-vaccinated public act as "portals of disease", both for themselves and others, due to iatrogenic immune dysfunction. My concern is that the vaccine schedules may be causing far more morbidity and mortality than they are preventing.
Just imagine a future wherein genetically-engineered mosquitoes act as “flying syringes” to deliver “beneficial” new vaccines to the masses.
http://www.youtube.com/watch?v=2VyGDGxktbI
http://vimeo.com/9945294
Just listen to Bill Gates wish for our future. Sorry Bill...no thanks...I don’t want any part of your vision of the future. I can’t believe what he actually says in this video clip. It sure sounds as if his vision for vaccines is to use them for depopulation, not to promote public health. Where am I wrong here? What does he know about vaccines that we don’t? Real question.
BTW - this is purely personal opinion, and is not in any way intended as medical advice, nor should it be construed as such.
Posted by: patrons99 | July 21, 2010 at 12:18 AM
Like Jennifer, my kids have congenital Lyme Disease, and I passed it to my husband as well. Out of instinct (and before I knew that I had Lyme), I didn't vaccinate. I had seen my nephew die after his DPT shot and my sister's next child develop issues after his (now Autism), I just couldn't do it.
I was labeled the freak in my family, but not in my liberal, crunchy community. Then the Lyme dx happened and people still think I am blowing our issues out of proportion (and that yes, we are sick, but certainly not with a tick borne illness). However, when their kids have a summer flu, or their co-worker's daughter has learning issues after treating lyme for 10 days instead of the recommended 1 - 2 months, they remember me and come back.
I wonder if people just avoid the whole subject of kids with issues/vaccines, etc., because they don't want to go down the rabbit hole of truth? I think so. Every little bit of truth we speak gets through on some level. Good for you and all you do!
Posted by: Jeanne Bain | July 20, 2010 at 10:33 PM
Great piece. This is the stuff I think about all the time. We can never expect that the powers in charge...the CDC/AAP/mainstream medicine...will ever concede. Everything is at stake for them. They have to continue the mantra "vaccines are safe, vaccines save lives."
BUT.........there are just too many neurologically impaired kids out there. No one can reasonably tell us why.
There are just too many parents saying that vaccines hurt their children.
There are just too many stories in the news about the controversy over autism and vaccines.
It's going to be a fight till the end---but we will win.
Anne Dachel
Media
Posted by: Anne McElroy Dachel | July 20, 2010 at 10:04 PM
The researcher who used viral microarrays to look for unintended virus fragments in vaccines and found porcine virus replied to me that they looked for #3 in the vaccines and did not detect it.
That being said, #3 has been notoriously difficult to detect w/o culturing in particularly susceptible cell lines, so we should continue to surveil vaccines for contaminant virus fragments.
#3 is novel in several respects, including suppressing innate and adaptive immune mechanisms and being related to MLV whose virus particles infect immune cells and have a neuroinflammatory effect, particularly on glia. It is a terribly simple virus, yet something about it allows it to dodge very sensitive PCR approaches. This makes me think there is a novel encoding, transcription, DNA methylation or other mechanism and that we will learn something profound about all viruses from this virus, causing us to revisit previous conclusions of other viruses and their diseases.
I expect #3 will be found in many HIV patients and probably associated with some of the symptoms previously thought to be specific to HIV. That's speculative...for now.
The more I learn about this virus, the more I understand how easy it is missed by the interested, and how easily dismissed by those trying to cover their butt because it was their job to catch it. I'm looking at you, the alleged infectious disease expert.
Posted by: TexasDad | July 20, 2010 at 09:36 PM
Credibility is when public schools will be places where "special ed" kids go and private schools, by default, will be full of kids that have not been vaccinated. In the sixties and seventies, "handicapped" kids had their own classroom in a far-away room somewhere on (or off) school grounds. In the 80's and 90's it was fashionable to "main-stream." Today, mainstreaming has become next to impossible to accomplish because of sheer numbers. I see a switch: the very few kids who are able to learn will be by necessity, pooled together and taught "alone."
When all this happens, those unvaccinated kids off by themselves learning like they did in the 50's and 60's will stand out like a sore thumb and other parents will have aspirations for their children to be part of THAT school. How? by NOT VACCINATING. Now, THAT is credibility!
Posted by: Cynthia Cournoyer | July 20, 2010 at 08:16 PM
It's been disheartening to watch researchers, medical professionals, educators and attorneys treated with equal disrespect as the average Joe after attempting to warn others about autism onset following adverse reactions to vaccines.
Unfortunately because those warnings went unheeded, new cases increased daily and we're hitting that critical mass at which everyone knows someone who's affected. And studies confirm that yes, mercury is still neurotoxic, and other studies reveal more pathogens hidden in vaccines.
Even the dullest observer can see that staying the public health course isn't working, and it's time to start actually LOOKING AT CHILDREN clinically instead of deferring to convenient statistical concoctions.
I've conclude that credibility is established when children start receiving insurance- and pharma-funded medical treatment for their vaccine-related injuries. And a big apology from the public health administrators who've dragged their feet for so long.
Posted by: nhokkanen | July 20, 2010 at 07:23 PM
Nope. No credibility whatsoever with my heard instinct - competitive/I'm smarter than you - no medical professionals whatsoever (lawyers, bankers, engineers, etc.) - Amanda Peet family.
Yes. Some credibility with some medical professionals who are not psychiatrists.
Back to Nope. As the psychiatrists are intractable, as anything outside of pharma is threatening. And, they are in charge of ASD in my city.
Posted by: Henderson | July 20, 2010 at 06:21 PM
Jill;
Me too!
I am going to get one done, and if he does not have antibodies then --- well he will I am sure.
Let us know how yours comes out, and I will do the same too.
Thank you Kent!
Oh, And Patron 99, I think I know what you mean by portals of entry but not sure. Could you elaborate just a bit on that.
Do you mean for example the old pertusis changes and infects those vaccinated or something else?
Posted by: Benedetta | July 20, 2010 at 06:06 PM
My proof of credibility is a cousin and a cousin-in-law deciding to follow my lead of being strong mothers and not vaccinating their babies either! Those 3 kids and my twins are the smartest, most clever, healthiest, curious, bright-eyed people you'd ever want to meet. I know that's not a coincidence. I learned about healthier options after having the kid with autism - saved his brothers, and now other family members. So, I trust the instincts of parents - many more of the young ones are questioning the status quo. That is how change happens.
Posted by: Laurie Redmon | July 20, 2010 at 05:43 PM
Credible is when your own GP asks you to give a talk on vaccines to the medical students working in his office.
Credible is when your ex-son-in-law(after 10 years) says after spending a day with his ASD son, "Now I see what you mean about his special diet."
Credible is when your letter to the editor appears in the newespaper and 5 local residents call to say they believe in what you are doing and do I think they should take a flu shot this year.
Credible is spending 5 days at Autism One
with people that validate what you believe.
Maurine
Love all your pieces, Kent. Thanks.
Posted by: Maurine Meleck | July 20, 2010 at 04:15 PM
You said: "I think in the back of my mind I often have this irrational hope that maybe I've got this all wrong. Is it easier to live in a world where you're practically the only sane one, or is it more comforting to think you've got it all wrong and the rest of the medical and pharmaceutical world is doing its best to help you?"
I really identify with this thought. For the first 10 that I had ME/CFS, I wanted to believe it was "mental", that Prozac and talk therapy would fix my head. A substantial part of me knew it was a lie, but it took actually doing the lie to make me sure I was right in the first place...and restore my confidence that I am practically the only sane one in my world.
Thank goodness for the internet, where we can enlarge our worlds to include others who are sane in the way we are. I am also grateful to people like Dr Peterson and Dr Mikovits for listening and believing patients when they presented with viral symptoms. That this newly found retrovirus was found in autism as well as CFS/ME is good news to me; I have cousins with MS, with children who have autism. I hope those of us with ME/CFS can ally with those who have MS, autistic children and similar diseases, to encourage the research we all need and deserve.
So far, I am only credible to others who have ME/CFS. My family is still in doubt; maybe that says more about them than it does about me and my credibility.
Posted by: oerganix | July 20, 2010 at 04:10 PM
Kent,
I LOVE your reply. I am one damned curious SOB myself. btw- My grandfather also died of prostate cancer (not with it but OF it). I am going to wait until the antibody test is out and then get my kiddos tested. I think it will be cheaper (although not sure if just as efficient - they may have the live RV and not enough antibodies to it). I hope we can talk more openly about this in the near future. All the best, Jill
btw- Check out Dr. Goldberg and NIDS.
Posted by: Jill | July 20, 2010 at 03:31 PM
I think people are starting to connect the dots, because the dots are people all around them coming down with these inflammatory and auto immune diseases and situations. Anyone who has been talking about this stuff for a while will definately gain credibility every time a question is asked and answered in a logical way that doesn't raise someone's hackles.
Technology is going to help with the diagnosis and steering of treatment. I'm encouraged by the retrovirus situation because of the possibilities it raises. On the bacteria side of things, just today I read about a gut bacteria that when isolated causes Multiple Schlerosis type symptoms. As many in this discussion have asked about the virus and how did it get into these people and could it be vaccines, I thought the same thing about the bacteria. With such a rise in MS, could this bacteria be causing it and where is it coming from?
http://www.sciencedaily.com/releases/2010/07/100719162643.htm
If the lab that found the pig wasting virus in the diarrhea vaccine can find things like this, can they examine the vaccines for this bacteria, too? Or retrovirus #3? The article also discussed the balance of good vs bad bacteria in the gut. So all the people who have touted the benefits of probiotics and/or recently read the article on fecal enimas to rebalance/recolonize the gut for more beneficial results with great interest probably had zero credibility 10 years ago. But here we are.
Once the technology is available, seems like there are no more excuses not to test further for these dangerous contaminants.
And testing and finding will create even more credibility. As long as the information gets out there, that is.
Posted by: Jenny | July 20, 2010 at 03:25 PM
Hi All-
does anyone know what happened to the wonderful website set up by late Dr. Clark www.nomercury.org?
Site had great resources including hyperlinks to scientific literature. Thanks!
JAM Annapolis
Posted by: Josh Mazer | July 20, 2010 at 03:05 PM
"WE would be credible"
IF the CDC, the AAP, the american drug lords/pharma, and the news media would ever make an attempt to tell the truth. They have all been bought out long ago.
As in Mexico, the drug lords want to rule.....
Posted by: cmo | July 20, 2010 at 02:57 PM
Jill,
The answer is I'm one damned curious SOB!
I do not have MS in family, but my wife has had some fatigue issues, slow healing, and as a teenager had psoriasis over ninety percent of her body. Also complains that her memory and cognition have changed over recent years.
My grandfather died of prostate cancer, so the connection made some sense for me to investigate. I have been looking at this for a few months but it's clear for reasons everybody here can understand that an association with our community is red hot. However, I can say that those involved in this research are very interested in helping our community. Until then, let's keep this on the down-low.
Kent
Posted by: Kent heckenlively | July 20, 2010 at 02:45 PM
Kent, I have been researching this RV since the paper came out in October. I have 2 ASD kids and 3 relatives with ME/CFS. I have been wondering if there was a connection. My question to you, when did you start researching this and what motivated you to get your daughter tested? I was wondering if your family has autoimmune diseases such as ME/CFS, fibromylagia, MS and also cancers as well.
Posted by: Jill | July 20, 2010 at 02:30 PM
We saw a mainstream Pediatric Rheumatologist for our son today. Since being on Prednisone for temporal lobe seizures he has normal GI function for the first time in 5 years and his brain in general is doing much better, including the seizures. This points to a whole lot of inflammation. The Rheumatologist ordered a whole autoimmune panel. When I showed her a stack of Autism/immune system research out of Pub Med she decided to add complete T and B cell panels. She also suggested a lumbar puncture if the autoimmune pannel comes up positive (ick!)
I was elated. Finally someone who WANTED to treat my son. After having been completely blown off by the pediatric GI several years back who refused to even examine my son, I assumed all practitioners would see autism on the chart and run in the other direction.
Instead of waiting for these professions to take an interest in our kids from the top down let's start bringing our kids to them, with all of our test results the DAN have taken in tow....bring our kids to them in a grassroots way. Maybe, just maybe, it is time our kids will start being able to get the medical attention they deserve.
Posted by: AnaB | July 20, 2010 at 02:26 PM
Hey Kent. Thought I'd mention that Amy Dockser Marcus of The Wall Street Journal won the Pulitzer for Beat Reporting in 2005 for a report about cancer. That same year she also did a report regarding chelation and autism: http://tinyurl.com/y9zno45.
Posted by: Charlie Hoover | July 20, 2010 at 01:58 PM
It seems, that the 'older' people in my life(Mother,Father,Grandparents & their friends)are a little more hesitant with the information that I give them on the reasons why I no longer want my boys to have vaccinations,want them to have a'crap'free diet and not get medication for everything that ails them. I get, "You have to have those shots for them to get in school." and "We fed all you kids that stuff." But when I provide them with some of the information that I have read and the conversations that I have had with my kids' pediatrician and my own Dr. they are getting the picture,slowly,but surely. My peers,however,are much more willing to do their homework (well,some of them)I have several friends that are pregnant,trying or have newborns. I let them know my position on vaccines and I refer them to all the people/places I have gotten my information from and tell them to not take my word for it,but to get informed for their self. I know I have credibility with them. I have gotten many thank you's for opening up their eyes to these issues(that they really didn't even know existed). And I thank Jenny McCarthy/Oprah for opening up mine.
Posted by: sc | July 20, 2010 at 01:54 PM
@ Carol - "If #3 is the cause of some or all of the symptoms of autism, how did it get into the children in the first place? Is it possibly a vaccine contaminant?"
Excellent point! Why not rigorously screen the entire pediatric and adult vaccine schedule for the presence of #3? Who knows what else we might find, e.g. "adventitious presence" of biotech-enhanced events? Biotech is far from being an exact "science". Unless someone is willing to look for something special or unanticipated, that "something" may not ever be found. Of course, present-day technology may not even exist to identify some adventitious contaminants or biologic recombinants in the current vaccine schedules. They are literally "cocktails" or a "gemisch" of various known and unknown substances.
Until someone convinces me otherwise, I have growing personal concern that today's vaccine schedules may actually make the heavily-vaccinated public act as "portals of disease", both for themselves and others, due to iatrogenic immune dysfunction.
Posted by: patrons99 | July 20, 2010 at 01:11 PM
Our dental technician was pregnant and questioned my wife about autism and vaccines. My wife told her the relevant info and she questioned her pediatrician about it. He told her she would have to find a new pediatrician if she would not follow the standard vaccine schedule so she caved. Her son is now 4 years old and in special ed. We do not typically seek health care for our children except acute care since the rest of it revolves around the vaccination schedule.
Posted by: Theodore M. Van Oosbree | July 20, 2010 at 11:57 AM
Great Job, Kent! I feel the winds of change blowing for us :) Sounds like you have a great doctor, I hope your daughter gets the help she needs and soon!
Posted by: Jen | July 20, 2010 at 11:52 AM
Kent,
I know that yellow fever, rabies and Japanese encephalitis vaccines were (and are, I think) passaged through mice, but surely these are uncommonly administered in this country. Are there others?
And do we have any idea what caused the 1984 Incline Village CFS outbreak?
Posted by: Carol | July 20, 2010 at 11:49 AM
No. Everyone thinks I'm crazy because I'm even farther 'out there' than most. My daughter has congenital Lyme Disease (+ some other tick diseases - out there) and this often results in Autism (out there). She is almost recovered from her (now Asperger's) diagnosis after 3 yrs of Lyme treatment by the only pediatric specialist with a clue in the US (out there/no way).
I gave Lyme to my now husband and then my daughter (out there). We're not alone in all this of course... there are so many families just like us. The Lyme Induced Autism is very new tho but I've met parents with kids who had congenital lyme... some developed autism, some didn't but the autism was cured. Wonder about the genetic predisposition idea + trigger (vaccines/Lyme/xmrv or combo).
My daughter is totally unvaccinated so vaccines had nothing to do with her Autism. Interesting case. She has none of the modern childhood problems like viral infections, flus or colds, asthma... all the stuff the vaccines cause. We're trying hard to get her to the point where we can stop the antibiotics and she can hold her own against the Lyme... she slides backward into the Autism if we just cut back... forget about stopping them yet.
So, I'm a freak so far from being credible. My family thinks I'm a freak for not vaccinating and for thinking something is wrong with my daughter at all (they live FAR away but seems my Mom gets the Asperger's now b/c it's not as scary as Autism in her mind.)
Posted by: Jennifer | July 20, 2010 at 10:53 AM
Carol:
#3 has a close homology to virus found in laboratory mice. Vaccines in the past have used mouse biological products. May already be in human population at rate of 3-7% from previous vaccinations. #3 may hide out in B and T cells of immune system, although there is some question about this. If so, vaccination stimulates immune system, prompting production of B and T cells, and thus you get the viral outbreak. Immune system had probably been keeping it in check until vaccination. #3 has been causing a huge controversy in medical community in regards to chronic fatigue so we want them to win that fight, knowing our fight will then be so much easier.
Kent.
Posted by: Kent Heckenlively | July 20, 2010 at 10:40 AM
If #3 is the cause of some or all of the symptoms of autism, how did it get into the children in the first place? Is it possibly a vaccine contaminant?
Posted by: Carol | July 20, 2010 at 10:24 AM
Credible? Yes, with some. My former boss just had her third child -- and she's in her 40s. She grilled me for information. My mother, on the other hand, is still in denial about many things. She believes it's environmental; but that it happens before birth (despite the fact that my son developed quite normally up to 18-24 months) and the vaccines had absolutely nothing to do with it.
Posted by: ObjectiveAutismDad | July 20, 2010 at 10:12 AM
I actually get a lot of people asking for advice (on vaccines and especially medicine). And these are co-workers in biotech. They seem to agree with everything I say and I know they take what I say seriously. But in the end, they rarely follow my advice (except HepB). In the end a spouse who's father is a pediatrician or a pediatrician always wins out. They get all the shots on time, they take the antibiotic everytime, etc. I have managed to get some Vit. D and cod liver oil in some kids. Diary out of some others, at least for a time. That's about it.
Close I think, but not quite there yet.
Posted by: Jack | July 20, 2010 at 09:51 AM
Regarding credibility: yes. I don't retain the information, but I do have the ability to explain what I know in layman's terms and that goes over well with my friends and family.
Just last weekend, the discussion came up at a picnic for my NT son's baseball team. I explained what I knew, the choices I made and no one looked down on me, no one challenged me, and in fact, those in the conversation agreed with my decisions.
Word of mouth is carrying more weight than the Pharm's PR blitz. We are turning the tide, one drop at a time.
Posted by: Deb in IL | July 20, 2010 at 09:21 AM
As part of your investigation of this retrovirus hypothesis, I strongly suggest reading "Fear of the Invisible" by Janine Roberts. I don't know where the truth is, but she presents some very interesting historical information that certainly raises serious questions about exactly what we know, or don't know about viruses and retroviruses and HIV.
If mainstream medicine is thinking you are sounding credible, it could be because you are now offering them a possible model of autism that they can more easily fit within the paradigms of disease and health upon which western medical practices are built.
I find it interesting that there are multiple reports that treatment for mercury toxicity helps many sufferers of autism as well as many with CFS. Perhaps #3 (I don't understand why you wish to avoid internet searching for this) could be a result of, or marker for, mercury toxicity?
Posted by: Sue | July 20, 2010 at 09:20 AM
Excellent review, just published today in Nature Reviews:
http://www.nature.com/nrurol/journal/v7/n7/full/nrurol.2010.77.html
or
http://tinyurl.com/39fucgt
bits of highlight: " xxx...had the strongest tendency to integrate near transcriptional start sites, CpG islands, DNase-hypersensitive sites, and gene-dense regions... " (ie places where it affects how host genes are expressed/methylated)..."
its sequence has been blasted against the human genome - it does not match anything in our genes (ie it is not endogenous)
Benedetta here is a link for you http://www.vipdx.com/
Posted by: Natasa | July 20, 2010 at 09:19 AM
Patricia Carter, jane - did you not see this part?
"(For reasons of avoiding internet searches, in your comments please refer to this retrovirus as "#3".)"
Benedetta - you can get tested for #3, but I'm not going to post where because of the quote above.
Posted by: A | July 20, 2010 at 09:13 AM
David Burd;
I know what you are saying.
But:
Think of it this way;
Doc Holiday went to the south west for hot, dry air to help him with his health.
In Mammoth Cave, Kentucky - one of the longest caves in the world there is still a building sitting down in that huge cave that was built as a hospital because they thought perhaps constant, cool, damp air would improve their health.
However; the only real treatment for TB was antibiotics.
Did you know that that the antibiotic does not kill T.B.!!!! IT just puts it in check long enough for your own body's immune system to encapsulate it - walling it off from the rest of the body.
Perhaps the good diet that we are giving our kids, and all the supplements are also helping the immune system and that is what is making the difference. BUt for the rest our children's lives they are only a day away of this virus making them have to lay down - stay in their rooms - stand and stare because they are too immune stress to move.
I have been considered the "crazy all my life - It is now a way of life, don't want to change now - I just want my family better.
I just lost a friend of 20 years just last Sunday because of vaccines. It has been a couple of years coming - so be it, either I am a fool or I am surrounded with fools. Either way - fools, and smarties don't mix.
Posted by: Benedetta | July 20, 2010 at 09:07 AM
Mary;
There are many - many drugs esp. antiviral drugs invented "HOPING" it would stop the AIDS or HIV virus. Not all of these are so dangerous. If there is a virus attacking the brain - how dangerous is that?
A virus?
When I think of the 27 years of the past history of my family - it makes sense that they all have been perhaps fighting to keep a virus in check.
Like shingles. You get chicken pox when you are young and you have the chicken pox virus within your cells for the rest of your life. When you get older sometimes the immune systme fails to keep it in check. My uncle had shingles just last year. He got over it - there are some people can not get over it and it continues forever. My uncle assures me it is because he did not take care of himself. (could be true, he is a black sheep, alright).
If there was a drug out there that could not only help with the autism - but my gosh- my daugthter and husband both are so sick right now. They both sleep all the time. My husband has severe pain like dibetic suffer called periphial neuropathy - but he does not have dibeties.
My daughter lays in the bed all the time, she just barely goes to work and that is all.
My aspie, stays in his room all the time. He has no desire to do anything. To get him to help or do anything is a big fight.
How does a person get tested for this virus, does anyone know?
Posted by: Benedetta | July 20, 2010 at 08:43 AM
"There are other approaches, based on improving the body's immune system to fight off the virus." Can you say what these are exactly? Have the anti-HIV drugs been used with any ASD kids yet? If so, with what results? Of the ASD kids tested for this retrovirus, what percentage were positive?
In terms of credibility, I feel that over the years, everyone, including mainstream doctors always believed me when I spoke of the vaccine issue. I know this is not everyone's experience but it was mine. The thing is that they never had any solutions. This is what our kids need most, solutions that work!
Posted by: more info | July 20, 2010 at 08:39 AM
Kent, This is the most up-lifting and "happy" bit of writing I have read in a long time!
Concrats on your newly rediscovered and always deserving credibility:-)
Posted by: kathleen | July 20, 2010 at 08:34 AM
Kent, A crucial similarity to the fields of both autism and Hiv is neither permits a cohort of kids to have a true placebo (to compare unvaccinated or not-drugged Hiv-positive kids, respectively).
The Health Generals cite "it would not be ethical" to not vaccinate, or to not give to helpless infants the anti-retroviral drugs (that are toxic to all human cells).
So, the "progress" in anti-Hiv drugs has been merely to go to considerably less toxic and lower-dose cellular poisons. Ok, since you may be skeptical, Canada has had but a single pediatric AIDS death spanning the last 8 years (and pediatric is anybody under age 15), with Canadian adult deaths down to 40 a year. One might wonder why this is not front page news?
The rest of the Western world echoes Canada, whereas in the U.S., AIDS mortality is a steady drumbeat on its anti-retroviral drugs.
Posted by: davidburd | July 20, 2010 at 08:21 AM
David, I am suprised that after 10 years of looking into antiretrovirals you have not learnt that the viruses that make up are genetic code (endogenous) are a VERY different beast to exogenous –i.e. still infectious and replicating - retroviruses.
Exogenous retroviruses capable of replication and infection are NEVER harmless.
In humans there is HIV. Then HTLV. What Kent called #3 - the third named EXOGENOUS (nb nothing!! to do with endogenous provirus that nowdays make up part of our gene code) causes neurimmune/neuroinflammatory disease in animals. It also causes persistant immune supression, mitochondrial dysfunction, lymphomas and other cancers, and many other nasty pathologies.
If it is harmless in humans it will not only be the first ever exogenous infectious retrovirus that doesn't mess up the host in one way or another, it will also be the first ever retrovirus that is selectively harming some hosts (ie animals) and not others (ie humans) that it infects. Bets are that won't be the case.
Please please please before you post again get informed on the basics of this matter.
Posted by: Natasa | July 20, 2010 at 08:14 AM
Note to GH: exogenous/infectious retroviruses are never harmless. It is just not in their ‘nature’. Don't ever assume.
Posted by: Natasa | July 20, 2010 at 07:37 AM
Kent (and Mary), Having spent a great amount of time over the last 10 years studying the anti-Hiv clinical trials for children (and adults), without equivocation I agree with Mary.
The Aids industry has been so wrong, for so long, with its drugs -- with the drug makers continually switching to new creations, and profiting tens of $billions a year. For instance, all Western countries other than the U.S. have basically stopped advocating the anti-Hiv drugs and their "Hiv-mortality" has also plunged to near-zero.
Kent, there are tens of thousands of retroviruses in our human makeup. The drug industry could pick any number of them that correlate with some type of illness or affliction, but it means absolutely nothing as regards health.
What it does mean is the self-serving drug industry is driven by gigantic profits, and finding, via new technology tools, parts of our human makeup not heretofore discerned.
Posted by: davidburd | July 20, 2010 at 07:34 AM
Thank you for this thoughtful article, Kent. I am wondering about the connection between #3 and autism, since I am #3 positive myself. I suffer from ME/CFS, not autism, but I have long been interested in autism and the treatments for it, because I have found that the autism treatments often help me. I really hope that safe, effective treatments will become available for all of us in the very near future.
Yes, I think perhaps the moment when we will be considered credible again may be close at hand.
Patricia Carter
www.mecfsforums.com
Posted by: Patricia Carter | July 20, 2010 at 06:55 AM
My dogged insistence with doctors that they consider the nature of vaccine reactions seriously once earned me a consult with a psychiatrist. In his notes the psychiatrist wrote 'What others think of him makes no difference whatsoever to him.' I can't say I have noticed any shift yet in my apparent credibility, hence the thick skin. It is the herd instinct, still strong in our species, that leads so many people fail to consider factual basis for ideas, preferring instead to follow the most common thinking in others.
I urge caution wrt retroviruses. Once the immune system has started to falter, persistent infections may start to gather, consequences of the illness rather than part of cause.
Posted by: GH | July 20, 2010 at 06:50 AM
I guess I have been blessed because I have always felt credible. The reason I feel this way is not because of my big head & ego... Which my Mother would tell you I have. I feel this way because the team from Age of Autism has always had my back. I look down the list of categories as it has grown with tears in my eyes. So many times I have referred back to the articles. Everyone of the contributors are not only credible but Inspirational, Motivational, Heroes, & World Changers. Kent, I cannot thank you enough I know lives have been saved, changed, & improved by the work you do on behalf of the community. Thank You is not enough.
Posted by: Tanners Dad | July 20, 2010 at 06:48 AM
Mary, any therapy is a trade-off. It may be that the protocol to treat XMRV-autism in children is more benign than that for HIV-AIDS, but it is early days yet.
If XMRV is the root cause of the neurological problems in ASD, as it looks like it is for ME/CFS, then it might be possible to return people to normal functionality, using an anti-retroviral protocol. You can decide if you want to go that route or not.
Personally, as I have about 40% functionality through being sick with ME/CFS, I would jump at the chance to take ART, but only under knowledgeable medical supervision.
Posted by: jane | July 20, 2010 at 06:45 AM
Thank you for this article Kent. Keep doing the good work, our children need us.
Posted by: Natasa | July 20, 2010 at 06:25 AM
OMG. AIDS drugs? Those are so dangerous. Destroys the mitochondria. I think you lost credibility with me.
Posted by: mary | July 20, 2010 at 06:04 AM