HARVEY KARP: DVD SALESMAN
THE POLINGS, MD, PhD, RN, JD, MOM, DAD RESPOND TO DR. PAUL OFFIT

MY FUNNY VIROLOGIST

VirologistBy Kent Heckenlively, Esq.

My daughter’s new virologist is a charming man and I think we’re going to be great friends.  He also thinks I’m completely wrong about vaccines and autism, and in my daughter’s case, seizures.

Between the opposing poles of these two statements is the hazy outline of what I believe is an evolving dynamic which is not yet fully understood.

Let me back up a little so you can fully appreciate the story.

About six weeks back I was given the name of a woman who had approached Generation Rescue.  She has a foundation which is working on the theory that the Human Herpes Virus #6 (HHV-6) is the cause of chronic fatigue syndrome.  This woman’s foundation often talked with the world’s top virologists who privately tell her their belief that HHV-6 is also implicated in multiple sclerosis, autism, and seizures.  She didn’t have time to pursue HHV-6 in regards to autism, but thought we should be made aware of the theory.

As the father of one child who was snatched from the spiral of autism, and one who is still severely affected, I know there are great possibilities as well as many dead-ends.

The kicker in this is that a commonly available drug, ganciclovir (Valcyte, not Valtrex) appears to be highly effective against HHV-6 over a six-month course of treatment.  I was also told that I should use a specific lab to do the PCR testing, as most other labs didn’t have the necessary sensitivity in their assays.

I approached my daughter’s neurologist with this idea and she gave me a referral to a virologist.  My wife and I took our daughter, Jacqueline, to see him, along with her voluminous medical records, and after about twenty minutes he said, sure, let’s give it a try.  As an added bonus, he agreed to use the lab I suggested.

To make a long story short, the blood got drawn, but it went to the wrong lab which screwed things up so badly they didn’t even get a result.  In the meantime we’d already started the drug, and we’re starting to see some changes, but I’m not ready to tell anybody this is the answer.

But we’re still back to not having a blood result on viral levels.  The doctor was very apologetic, promised to make things right, but then was called away for two days of meetings.

That’s when I decided the best thing for me to do was simply go down to his office at lunch, and in the nicest way possible, park my ass there until we got this wrapped up.  I think he was a little surprised by my presence, but he seems to be a thorough man, and this situation greatly bothered him.  “It’s really good you’re here,” he said.  “Let’s both go down to the lab and get this situation worked out.”

The last time my daughter had her blood drawn the lab didn’t understand that they could send it to an outside lab, which caused the mix-up.  (In their defense, it was a Friday afternoon.)

I wasn’t there to talk about vaccines, autism, and seizures.  I just wanted to get a blood draw and have it sent to the right lab.  But as we waited for the lab personnel to call the lab back east and figure out that their hospital group had used this lab before, the virologist couldn’t help talking to me about vaccines.

In what he thought was the nicest way possible he was letting me know that vaccines didn’t cause my daughter’s problems.  I just smiled, then replied, “Well, the number of sick kids we have today is unprecedented.”

At which point he just smiled and nodded and we waited.  He said he was happy to hear my reports that my daughter seems to be tolerating the medication well and having a lessening of seizure activity, then he went back to the vaccines.

I told him about my son Ben going mute for twelve days after a vaccine, and us getting him back because on day three I read Karyn Seroussi’s book on the gluten/casein free diet, and put him on the diet.  It took Ben a year to catch up to his peers in language and two years for his sensory problems to be resolved.  Now seven-years-old, Ben is at the top of his class academically, plays soccer, has lots of friends, and is a clear teacher favorite.

The virologist smiled and nodded and we waited.  I asked about his kids and he talked about them, and then he started talking about the vaccines again.  “I’m not against vaccines, doc,” I told him.  “I just think they need to be given safely.”

That seemed to reassure him for a moment, and he said, “Well, that sounds like something we can agree on.  You don’t sound like one of those people who wants no vaccines.”

“Actually, doc, I’m supposed to be one of the worst, and I just think going back to the 1983 schedule when autism was 1 in 10,000 instead of 1 in 150 sounds like a great place to start.  Doesn’t seem like anybody would be putting public health at risk with that approach, am I wrong?”

He smiled and nodded, and was about to say something else when the lady from the lab came back and said everything was settled.  The hospital would draw the blood and send it to the outside lab which had been recommended to me by the woman from the HHV-6 foundation.

“The lab you wanted is a good one,” the virologist told me.  “A colleague of mine in Sacramento has used them before and we talked about it.”

“That’s great,” I replied.  “I’m coming up with these ideas, but I’m counting on you to tell me if anything I propose is unsafe, or if a certain lab doesn’t have a good reputation.”

He thanked me, and we started to leave, and he wanted to talk to me some more about vaccines and autism . . .

I felt like the neighborhood bad boy who keeps getting pestered by little Miss Goody-Two-Shoes.  After a while it’s clear that Miss Goody-Two-Shoes is interested in nothing less than taking the bad boy home with her.  I really wasn’t interested in talking about vaccines and autism.  I just wanted to get a viral test for my daughter.  However divergent our opinions on other issues, getting a viral test done should have been all we needed to talk about.  All told I must have spent a half-hour in this passive-aggressive back and forth about vaccines and autism.

So what do they think about us?  We must present them with a conundrum, and I believe the truly caring medical professionals are honestly puzzled.  They’ve done all their tests and can’t give us any answers.  But they don’t believe what we are saying.

And yet, just like little Miss Goody-Two-Shoes, they can’t seem to walk away from us.

Kent Heckenlively is Legal Editor of Age of Autism

Comments

Jill

Yes, Kent. Still very interested in your results/opinion of this HHV6 Roseola association. My daughter tested for very high titers of HHV6 (after Roseola) when she was 5. We did Valtrex through a doctor in California for months and months. The HHV6 numbers actually got worse. We are heavy into sequential homeopathy, but still looking for answers as she is now 22. Thanks for any information you can send.

Marcia Hinds

Kent,
Just was sent this article you wrote some time ago. As you know addressing the HHV6 issues was a huge piece in Ryan's recovery. I suspect there are many Ryans out there and hope you keep talking about this.

And thanks for the great review you wrote about my book "I Know You're In There." http://www.ageofautism.com/2014/09/book-review-i-know-youre-in-there-by-marcia-hinds.html#comments

My book can previewed at www.iknowyoureinthere.com

You make a difference for so many!

Thank you,
Marcia Hinds
Ryan's mom

Monica

to Kent Heckenlively

Hi Ken,
it has been a long time since you posted about Herpes Virus 6, and your screening and treatment.
I am considering the same for my son.

Could you kindly give me a feedback if you saw any gains/side effects from the treatment? I would greatly appreciate.
Thank you Monica

Donna K

From Lawrence's comment: "It would be interesting to test a child for HHV-6 before and after vaccination to see if there is an increase in HHV-6 replication, something that is associated with all kinds of neuroimmunological damage."

Seems to me it's well past the time that the vaccinologists should have run this type of study.

Hmm, increasing viral replication...maybe there's more to it than just immune suppression and makes me wonder about the "live" viral vaccines that are capable of replication and wonder how the vaccine developers design these viral proteins so that they can replicate fast enough to keep up with demand for vaccine production in addition to how they "condition" these same viral proteins so that they are "hardy" enough to maintain their replicability during the shelf life in each vial.

Could the "conditioning" of the vaccinal viral proteins or maybe more important the "immortalizing" component of the soup that they are suspended in transfer during vaccination to other wild viruses in the human host - viruses like HHV-6 that may be more amenable to these "conditioning effects"?

Autism Mom

I believe this theory whole-heartedly. My son has had Roseola 3 times in 14 months and is also ASD, the first two times with Roseola within 6 months, and he constantly has random fevers and rashes. I believe this theory and am getting titer testing done on him as well as Nagalase testing to see if he can have GcMAF therapy. He is currently 29 months old.

Amanda

I know I'm commenting on an "old" post...but wanted to comment. My son is 29 months, got his first Roseola (HHV-6) infection at age 15 months. He started having problems at this point. Fussy, stopped mimicking, etc. We had the MMR a couple of months later. He broke out in Rosolea again right after getting the MMR (less than 2 months later). He's broken out with HHV-6 a total of 4 times now and he's 29-months old. He has developed sensory processing disorder and ASD. He does not speak. He just came down with another fever last night and we're waiting for the rash. I am 99% convinced that his recurrent HHV-6 outbreaks has everything to do with his ASD and sensory problems. Trying to find a doctor (MD) or naturopath in my state to take me seriously. Right now we're doing diet and supplement changes to boost his immune system. Looking to get some immune testing done as well.

sue

the best lab for HHV6 PCR testing is ViraCor. it is the most sensitive.

for antibody testing, i think you can use either Focus Labs (which was bought by Quest, but i think you have to indicate you want the blood sent to Focus) OR Specialty Labs.

just wanted to applaud parents for looking into HHV6...it is wreaking all kinds of havoc in many areas of medicine and NO ONE seems to care!

sue

desiree

new breakthrough is happening with my son. Juat started the anti-viral,anti-fungal therapy. got the viral titers test done, what came up was elevated antigens of mumps/rubella-(hello MMRshot) .He had a rash last year that turned up roseolla.well,2weeks on diflucan and 5 days on Valtex. it is like night and day. his teacher said he was alot more social and talkative. his best day yet. best to naturally chelate before therapy. we did that. He is in mainstream kindergarten.with expressive language and some social issues. good luck to everyone. I know we ate on the road t recovery.

Lawrence

Given your background in the vaccine issue, you are probably one of the best people to consider the possibility that HHV-6 and vaccines may be a dangerous combination.

The HHV-6 story is as troubling as the vaccine story. And it involves far more victims than the victims of autism.

It would be interesting to test a child for HHV-6 before and after vaccination to see if there is an increase in HHV-6 replication, something that is associated with all kinds of neuroimmunological damage.

It would also be useful to know if there is a correlation between activated HHV-6 and mitochondrial dysfunction in autistic children.

It will be interesting to see how Offit and his colleagues react to the introduction of HHV-6 to the autism debate. If the growing body of research about the destructiveness of HHV-6 in AIDS/CFS/MS/autism gets dragged into this debate, Offit and company might not have a leg left to stand on.

Katie

Kent, how is progress on Valcyte, keep us posted on your daughter's progress. thks Katie

Lawrence

HHV-6 is a very big story. And it has a lot of shocking political issues connected to it. It's another example of how incompetent and bullheaded the CDC and NIH have been because they have ignored HHV-6's role in AIDS and CFS for over two decades. And that has potentially had the collateral effect of HHV-6 not being recognized as a serious element in autism.

In several weeks a very important conference devoted to HHV-6 will be held in Baltimore:
http://www.hhv-6conference.com/

The person who has done the most reporting on HHV-6 is Neenyah Ostrom, a friend of the late Nicholas Regush. In addition to reporting on HHV-6 for ten years (1986-1996), she wrote three books on Chronic Fatigue Syndrome. Her work was ignored by the mainstream media.

If HHV-6 does turn out to be a cause or cofactor in autism, expect some interesting litigation to ensue. HHV-6 was discovered in 1986. Instead of acknowledging its role in AIDS, the HIV establishment has kept a tight lid on it because it threatened to pull the rug out from the HIV story it has been telling the public about AIDS. But HHV-6 is now causing so many different health problems, it can no longer be ignored without putting everyone's health at risk.

The pioneer of HHV-6 research, Konnie Knox, was unable to get some important research published that showed the dramatic role it plays in AIDS. Her work still has not gotten the respect it deserves. Ironically, it may take some truth-telling about the role of HHV-6 in autism to get the whole truth out about the role of HHV-6 in AIDS.

Kent Heckenlively

The lab is called Viracor. You can find them on the web at www.viracor.com I'm still waiting for my doctor to get back to me. The results were e-mailed to him two days ago.

All the best,
Kent

Susan

My daughter also had a high HHV6 titer on a Quest Diagnostics lab. Do you mind sharing what lab you were told to use? I would be interested in having her re-tested. Keep up the great work! As parents, we are making a difference even if it is slow and painful!!

Cathy Jameson

Kent,

Great post as usual. Your last line, "And yet, just like little Miss Goody-Two-Shoes, they can’t seem to walk away from us" reminded me of what we are experiencing in our little town. Even my husband is getting caught up in even longer than anticpated conversations with people, some of them strangers, when we bring up autism and vaccines. Our kids are making a difference. They are changing lives one by one with these small encounters. I feel so frustrated most of the time but knowing that an innocent child can make such a difference to a complete stranger helps heal some of the pain.

Keep on rockin'--you're doing great.

Cathy

MikeWag

Kent, I would have said that I don't believe that vaccines cause autism either, I believe they cause neuroinflammatory disease which expresses itself as what you (the Doctor) call autism, epilepsy and similar things based on symptoms. I then would have said, " you should check out the 11 published papers which discuss autism and neuroinflammation. My favorite one is, "Neuroglial activation and neuroinflamation in the brain of patients with autism(1)". This is when the debate gets fun!

(1) Vargus DL, Nascimbene C, Krishnan C, Zimmerman AW, Pardo Ca. 2005 Neuroglial activation and neuroinflamation in the brain of patients with autism. Annals of Neurology 57:67-81.

Twyla

Jan, you mention the roseola virus. In her book "Children with Starving Brains: A Medical Treatment Guide", Dr. Jaquelyn McCandless describes a case where a high-functioning autistic girl’s mother reported that her daughter had become autistic after having a case of roseola, and continued to have recurring bouts of roseola. Of course, other doctors had thought the mother's belief in a "brain virus" was silly. But tests confirmed an ongoing infection with the roseola virus. When treated with the antiviral medication Valtrex, after just a week or so, "her eyes brightened, she was more 'present', became wittier and more expressive generally, and was starting to acquire friends. It was as if her classmates had never seen her before. Within three months she was on her way to becoming a normal, rebellious, typical teen-ager, totally mystifying her parents and surprising tutors who had been working with her for years... She started attracting boys for the first time in her life and began the usual dramas of high school... She still exhibited some learning difficulties, but the positive change in all areas of her life was noticeable to anyone who had known her before the treatment." The girl went on to college, maintaining a B average and a relationship with a steady boyfriend.

Unfortunately, Dr. McCandless found that most of her patients do not have such a big response to antivirals. But she said that for a subset of her patients with autism, addressing a viral infection has significant impact.

Richard

I believe that as more and more information comes forth on vaccines and autism those honest ones in the medical profession will have a stirring in their conscience and will become increasingly concerned deep down inside that they may be partly responsible for damaging children.
I almost felt as I was reading your story that the virologist who kept asking you questions had guilt stirring in his heart.
I bet that almost any medical doctor that has administered a vaccine can look back and start wondering if maybe they had waited until that preemie was a bit older or weighed more would that child be healthier today?
Maybe if instead of giving 5 shots at once to a sick child if they had only postponed shots for a few months or spread out the shots a bit more would that child be different?
I think as more information comes out linking the aggressive vaccine schedule and mercury to damage to children that the honest ones in the medical community will be more and more guilt ridden as they realize they pulled the switch that sentenced some children to a never ending nightmare of a life or in some cases an early grave.
How is your quality of life if you suddenly realize you may be responsible for hurting or maiming hundreds or thousands of innocent children and infants!!!!!!!
I pity the honest ones who will have to live the rest of their lives with this harsh reality.
--

Sandy Gottstein

Kent,

I will be very interested in hearing what happens, and hoping for a breakthrough.

All the best,
Sandy

Kent Heckenlively

Sandy:

I actually read Nicolas Regush's book "The Virus Within" several years ago and have kept it with me. I always wondered if there might be a tie-in with autism and seizures, so when I got this information from the HHV-6 Foundation it made me want to test the hypothesis.

We got Jacqueline's blood drawn yesterday, so hopefully we'll have an answer in the next week. I'm curious what the result will be since we've been on the medication for a little more than three weeks out of a suggested six-month protocol.

Her seizures have been calmer the past week (although it often seems we go through ups and downs in the course of a month), but yesterday she also had a drop-seizure. So, if it is the virus, hopefully the viral test will tell us if the virus was active.

By the same token, though, (and even our virologist had said this to me), what we're looking for is a clinical response, because even the best tests seem to not have the needed sensitivity.

All the best,
Kent Heckenlively

 Jan

Thanks Kent! I loved reading about your experience.
It makes me wonder, I know I heard somewhere that Roseola is one of the herpes virus' and it makes me wonder. My son developed autism in a long drawn our decline that started after his MMR vaccine. BUT just a month before his MMR he had nasty case of Roseola. (and he had an ear infection when he got his MMR.) I always suspected that there was a connection there too with being sick just before his vaccine, and that maybe it wasn't just the MMR.

Sandy Gottstein

PS Good luck, Kent!!!!

Sandy Gottstein

My dear, late friend Nicholas Regush (of RedFlags) wrote a book on HHV-6 called "The Virus Within - A Coming Epidemic" in 2000. You can order it from Amazon via Vaccination News at http://www.vaccinationnews.org if you wish.

Kent Heckenlively

Dear Sonja:

The information can be found at www.hhv-6foundation.org/ There's a good deal of medical research on the site, but it's what I've been told privately which got me interested. Some of what's on the site is also a little confusing. Although it doesn't seem like it on the page Valcyte and ganciclovir are the same. (You don't need to worry about vangiciclovir.)

I also want to say this is something I'm investigating for my daughter and I can't yet say anything definitive, especially as we've been down so many blind alleys. (I still don't have her viral test back.)

By the same token, I didn't want to be the only one with this information. If it doesn't help my daughter, maybe it can help others.

All the best,
Kent Heckenlively

Susan

"That seemed to reassure him for a moment, and he said, “Well, that sounds like something we can agree on. You don’t sound like one of those people who wants no vaccines.”"

Kent the next time you see him please tell him that you have thought about it some more and have now decided that what you would really like to see is a vaccine schedule that is customized to each individual child. That its time the pediatricians had a grassroots movement amongst themselves and would spend time to make sure that the vaccines are going to be safe for *every* child out there. No collateral damage.

In fact rather than insist on reverting vaccine schedules to 1983 or before, THIS - as Dr. Poling suggested - should be the new mantra. I think everyone would agree that this is indeed, sound practice. After all, nobody needs to get hurt. I would like to see studies correlating vaccine damage to individual genetics and vaccine recommendation made on that basis. These doctors are smart, I am certain they can figure it out.

Sonja

Kent and Jeanne,

Where can I find information on this research as my daughter also presented with very high HHV6 titers and would like to pursue this. Any information would be appreciated.

Sonja

Jeanne

Kent, I have heard of the idea that the Human Herpes Virus #6 (HHV-6) might play a role in autism. Just last week I completed a neuroimmunology autism panel on my son (which includes HHV 1,2&6 screening). After being told of some interesting research currently underway regarding HHV6, and now reading your post, I am excited to see what the results of the tests have to say.

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