Now, recently, he has founded an organization--abbreviated NIDS--it's short for Neuro-Immune Dysfunction Syndromes and he is the founder and also the director of the Medical Advisory Board and Research Institute and what he has to say to us today is extremely important so please listen closely. Welcome, Dr. Goldberg.

Dr. Goldberg
Thank you, Dr. Mazlen. It's a pleasure to be here today.

Dr. Mazlen
We welcome your appearance on our show. I know you have important topics to cover so lets get right into them. You want to talk, maybe, just in an introductory way to the audience about these problems that you're looking at.

Dr. Goldberg
Well, as many people know by now, I actually started in this direction when my wife became ill in 1982 with at that time a totally undefined, unknown illness and subsequently these 16 years have led into my interest as a pediatrician as I progressively began to watch this hit, first parents in the practice and then children. As it began to hit the children I had the fortunate pleasure, in a sense of working with Dr. Ismael Mena at Harvard General on NeuroSPECT scans and we began to discover, in a sense, a striking overlap between the findings in adults with Chronic Fatigue Syndrome, children with these variations of fatigue, attention deficit processing disorders and I can now say that it has come down to what is many children being labeled as a typical autism/PDD and so on with cognitive dysfunction.

Dr. Mazlen So now we have a wider variety of disorders that you're looking at and perhaps you might want to define autism in terms of what you call autistic syndrome which is the newer form you're seeing as opposed to the classical.

Dr. Goldberg
Well, as a pediatrician, I was taught in medical school that autism was an extremely rare disorder, that it was basically one or two children per 10,000 and if I was lucky I would never see one in my entire lifetime in practice. At this point, myself and many other pediatricians will say there are children being labeled autistic who are coming literally out of woodwork. They are basically normal children to about 12, 15, 18 months of age and then literally lose the ability to talk, some of them never develop the ability to talk, get labeled autistic by their strange behaviors and symptoms but at this point in time show the same kind of markings and findings as I have been experiencing with children with Chronic Fatigue Syndrome as well as adults.

Dr. Mazlen
And it's more prevalent, now.

Dr. Goldberg
The prevalence, the CDC is quoting incidence of 20 - 40 per 10,000 of autism. There was just a recent meeting in Reno of the Autistic Society of America and supposedly there is a quote coming from there of 1 in 200 children having some variation of autism, PDD, or Aspeger (sp???) Syndrome. I believe very strongly 99% of those children are connected to what we are discussing.

Dr. Mazlen
OK, I know that there are a number of important findings that you've made. Some you've just mentioned about the scans of similarity with the decrease in blood flow in the temporal lobes and to a lesser degree the parietal lobes, but you also go into the fact that there may be some autoimmune aspect which is secondary to a viral infection which might explain some of this. Could you go into that in more detail?

Dr. Goldberg
Be happy to. The key with all this has been since this began to unfold, literally at first within my practice and then ultimately as I became involved with researchers around the country, the biggest key has been to explain how do we have these findings on the NeuroSPECT scan? And with involvement with, thankfully, many excellent researchers, when you show this shutdown of blood flow in the temporal lobe you begin to explain many of the symptoms. The right temporal lobe is social skills, your left temporal lobe is auditory processing and language and since the MRI's and CAT scans are essentially normal on these children you have to look at what mechanism can shut down, in essense, bring profusion and not have initially permanent damage there. It turns out that that basically has to be an immune mediated process. What has become disturbing is that many of these children have shown markers such as low Natural Killer cells, elevated viral titers that are consistent with the idea that we are looking at some background virus.

Dr. Mazlen
Yes, we had talked about that before the show and you had mentioned that it could be one or more viruses and that's certainly consistent with the evidence that's now prevalent with adult Chronic Fatigue Syndrome as well as in the younger age groups. Now, you mentioned that there's a cutoff. You were saying to me and maybe you could just briefly talk about it that if a child gets what is punitively some type of viral type of involvement between ages of about I think you said about 15 months and about 18 months that they might then develop the autism. Is that the age range?

Dr. Goldberg
Yes, I think the key in looking at this is that the old ideas of autism was a developmental disorder that in theory something happened in utero, before birth, an a child generally showed symptoms as early as 4 - 6 months of age. The key here is these children--and many parent will smile and show videos of their children--are normal appearing infants, bright interactive, many of them develop early language and somewhere between 12, 15 and 18 months of age literally become withdrawn, quiet, off in their own world and as I worked with this further I literally described this phenomena to the parents as these children are in a fog similar to adults with Chronic Fatigue Syndrome.

The key with this has been in our work that you cannot explain this in a sense by any other mechanism than the immune system and/or a component viral factor going on.

Dr. Mazlen
Well, we are going to talk about this later. And after we go to a break in a little while we'll come back and have you talk about some of the treatments that you've been using. Of course, this is very important in terms of the autism, but also also it effects all the children, as you mentioned to me at another time, about ages 8, 9 or 10 and they develop the Attention Deficit type of problem, hyperactivity?

Dr. Goldberg
Yes, this is another key and putting the whole picture together clinically, dating myself when I was a medical student we were taught about that rare hyperactive child who basically was considered very intelligent, very smart if you could get them to stay in their seat, and, paradoxically, you gave them a stimulant medication to calm them down. What has happened in the pediatric literature dating, ironically, to the late 70's early 80's is you have a large group of children who are being called a typical ADHD, quiet ADHD, mixed ADHD and what we have found on neurospect is those children fit into a spectrum of what we are trying to define now as NIDS, standing for Neuroimmune Dysfunction Syndromes to try to encompass this whole spectrum.

Dr. Mazlen
Well, all of this combined is I think a major area of extreme importance to parents all over the country.

I wanted to ask our guest, Dr. Michael J. Goldberg who is the director of the Neuroimmune Dysfunction Syndrome Medical Advisory Board and Research Institute, which is in Tarzana, California. I wanted to ask him about some of the treatments that you've been using to approach the autism in this new form.

Dr. Mazlen
Well, ironically, actually let me backtrack one speck, Dr. Mazlen, what has been also very striking, as this has evolved clinically, is that at this point, I have in my practice literally dozens of families who have a parent who has variations of neuroimmune diseases, Chronic Fatigue Syndrome, an older child with ADHD, attention deficit variance and a younger child with autism/PDD. So as I began to approach this, basically, in trying to work initially with older children, my wife and other parents in the practice, I began to approach it like "how can you try to cool down an overly reactive immune system and if there is a virus present how can you try to deal with that?" My first general approach is to remove negatives. I feel that a key is to try to look at eliminating factors in the diet, in the environment that may be triggering off that immune system, in spite of what was very controversial in the past, the use of an anti-fungal has begun to make more sense given that this is a compromised immune system, and what has been shocking in dealing with these children is that I began to have an almost inordinate number of children respond the usage of Zovirax or Valtrex which are basically anti-herpes viral agents. According to the researchers I've been working with, the only thing you can be treating when a child responds that way, is some herpes related virus or retrovirus complex. As is frequently done out there with adults I have also begun using very low dose SSRI's--Prozac, Paxil, Zoloft-- with these children and very thankfully have an enlarging number of children who are returning to regular classes, being recognized by the school districts as intelligent, some of the children being pushed into honors, and I feel that there is a lot of optimism that we can help these children even though we must focus on it as an emerging crisis.

Dr. Mazlen
Congratulations to you on what you have been doing because obviously for a lot of families this has had an aura of helplessness associated with it. I know that it's premature to say that it's a panacea for the disease. Obviously, not. There must be some cases that don't respond as well. Is that true?

Dr. Goldberg
In some cases, as I have said to many parents, some cases and certainly when you catch some of these children young, I will never sit and say it is easy, but it is almost a pleasure to watch how they can respond very quickly. What is distressing is the older a child becomes the more their brain has been shut down, the harder it is to see a recovery. And yet, on the other hand, I have older children again, some diagnosed as classic autism, not talking who at 8, 10, 12 years old with the help of medication and a very excellent speech pathologist are talking. This goes against all common dictums we were taught out there.

Dr. Mazlen
Well, that's why we're going to have to stay in touch with you and have more shows as you progress with this work because it is extremely important to get it out. What about the treatment of the attention deficit/hyperactivity group?

Dr. Goldberg
Well, this has become a very major key based on the NeuroSPECT findings and I must take a second to give immense thanks to initially Dr. Ismael Mena and now Dr. Miskin and Dr. Bruce Miller at Harvard General Hospital whose insight through the NeuroSPECT have really helped to guide the therapy. What you see on the NeuroSPECT scan is the old classic hyper-ADD child has increased blood flow in the frontal lobe area and as much as I'm not a fan of them could argue that a medication such as Ritalin or Dexadrine may have a place in those children but what is very disturbing, on the NeuroSPECT scan on these children with quiet ADD which I will basically say is Chronic Fatigue Syndrome in these children, mixed ADD, what you see is this shutting down of blood flow in the temporal lobe. In turn the focus of therapy has actually been to say how can you increase the flow of function in the temporal lobe area and thankfully, while they were not invented for this purpose, the SSRI's seem to help that area immensely.

Dr. Mazlen
That in itself is remarkable because...

Dr. Goldberg
The difficult and almost scary thing about this to me as a pediatrician is the minute you say attention deficit therapy becomes Ritalin or Dexadrine. On the NeuroSPECT scan we have strong evidence that when you use Ritalin or Dexadrine you are shutting down the blood flow to the brain so in turn you may actually be aggravating this condition in these children with mixed ADD or quiet ADD.

Dr. Mazlen
Tell me, also now, what about the older children with Chronic Fatigue Syndrome who this has skipped. Do you believe that they just got it later on and therefore they were spared all of these neurocognitive and psycho-emotional type problems?

Dr. Goldberg
Well, very interestingly, at the AACFS meeting in 1996 I presented an abstract where in 1994 I presented the Chronic Fatigue findings on NeuroSPECT and in 1996 I presented a comparison on the findings on children with autism versus Chronic Fatigue Syndrome. At that time I in a sense stuck my neck out and made a statement that if you look upon this as an autoimmune/viral process, if you are an adult or teenager with a developed brain, developed immune system and this hits you, you have what we facetiously refer to as Chronic Fatigue Syndrome, ADHD variance. If you are an older child, 5, 6, 7, 8 years old and this hits you, you have these variations of Attention Deficit. If you are a younger child, 12, 15, 18 months old and this starts, you have the autism/PDD. In fairness and at that type of a meeting, very few researchers laughed at that statement.

Dr. Mazlen
Well, I'm glad to hear that because I don't think any of this is a laughing matter. It's so important socially and so important on a human basis for the parents and the families of these children and for the children, for their futures, that we're going to spend much more time with this later on in the year.

Dr. Goldberg
I really appreciate that because I say to many parents I did grow up in the 60's and 70's as an alarmist and environmentalist standing on bandwagons, but I think that we have to look at the fact that these are clinical disease patterns that literally did not exist in the 60's or 70's and the effects I have seen on these parents, these mothers has been become really unbearable at times.

Dr. Mazlen
Well, also I've been appointed as a member of the national task force on Stealth Virus disease and I know that some of the autistic children that the group has been testing, some members of the group have also tested positive for this virus. Whether or not it's involved in your cases, I don't even think that's the most important factor. I think what's most important is that it's a new avenue of research just as you're opening up new avenues of research to be followed and it offers hope and I think that hope is the key thing here. Where do you want people to communicate with you? Where do you want them to get in touch with you.

Dr. Goldberg
We've actually set up a website that is http://www.neuroimmunedr.com and on there there is a board for questions, answers, responses and my office number in Tarzana is 818-343-1010 and we are trying very actively to mobilize support behind this NIDS research board that we can focus on this as an emerging pandemic crisis for these children.

Dr. Mazlen
I'm certainly glad to hear that. For our listening audience, of course, I'm glad that they're hearing about it and we're going to get it out all over the world later in the week because the transcripts go out everywhere.

Take whatever few minutes we have left to summarize what you're doing now. What does the future hold for this work?

Dr. Goldberg
First off, let me comment that when you mentioned worldwide audience, that I gave a talk last year in Australia. I have received web responses and actually am following patients at this point around the world and this is certainly a worldwide phenomena. My hope is that by approaching this with top researchers, a focused effort, that we can, using technology that exists, accessing new therapies that we can really change this in the next few years. Unfortunately, these children are on a time deadline. If we don't help their brains develop and evolve while they are young we will never be as successful when they are older. So everything right now is really the effort to say can we focus, bring in good people and solve this?

Dr. Mazlen
I think that really is, you said it, you know, it's the crux of it. I know you have some people working with you who are well known. Maybe you want to mention a couple of names so that the audience will get an idea of how you are carrying this forward.

Dr. Goldberg
Yes, with the creation of this NIDS research board I am very pleased to announce that Dr. Nancy Klimas is on the board, Dr. Bruce Miller who is a reknowned neurologist and Dr. Ismael Mena who I can never again say enough thank you's to for his SPECT work. Along with that we will be attempting and bringing in other top infectious disease immunologists in the attempt to focus and solve this problem.

Transcribed by

Carolyn Viviani
carolynv@inx.net

Permission is given to repost, copy and distribute this transcript as long as my name is not removed from it.