The next steps in therapy are based on attempting to use pharmaceutical agents and targeted therapies to help remove and control stresses on the immune system and the brain, and to help support restorative (not behavioral control) function for the brain, particularly the temporal lobes. As a pediatrician, I would stress the goal is a bright, alert, healthy growing child. The use of a medication (or any agent) has to be with an expectation of not only not creating harm but also helping the patient to get better, achieving and reaching healthy, potentially normal functioning. I frequently note to parents, “I am not a psychiatrist.” I will not prescribe medications such as antipsychotics to “control” these children; I do not believe in them.
I will paraphrase all this by saying I look at these children as potentially healthy children fighting a serious illness, and that always brings me back to basic pediatric training and medical training: “Do no harm.” As much as I want to help a child get well and win this battle and help parents who are desperate to help their child, a key restriction over the years is I cannot use a product that I know could be likely to cause harm or long-term damage to that child’s body or brain. A very large mistake made while treating these children as though they have “autism” is the assumption that the child’s brain is already injured or damaged. Many therapies are mistakenly applied. The use of supplements and many procedures (chelation, HBOT) may damage a child’s brain. Antipsychotics or other medications could never be healthy for a potentially normal brain; because these children are sadly not considered to have normal brains, doctors and parents are willing to take risks that are otherwise unacceptable. I will always stress that the guiding principle in treatment is an expectation that the child started off with a normal or above-normal potential, and I must try to give that child a chance to recover, to be normal or above!
Antivirals
When a child starts on an antiviral, there’s about 70 to 80 percent chance I’m going to get a positive response. With a positive response (often after a die-off or kill-off effect), a child on the antiviral will brighten up, become more alert, and begin to process better. If I take them off (something I do only slowly, and with great caution), and they are not in full control of the virus, they become dull and “spacey” again. In theory, the only thing you can treat with Valtrex or Famvri is a herpes-related virus. Antivirals are not neurotropic agents and don’t, in theory, work on the brain. The use of an antiviral and a positive effect clinically simply helps confirm that viruses (or, at minimum, a dysfunction connected to them) are involved.
Strong lab markers supporting the likelihood of a virus are:
➢ Low NK cells (less than 4–5 percent), with or without elevated HHV6 titer.
➢ Elevated alpha interferon (should be a marker for potential viral activation for any immunologist or infectious disease specialist).
➢ Elevated HHV6 titer (40 or above Elisa, “old” titer of 1:320/ likely 1:160) or positive IgM of any of other viral screens above. In theory this only tests for one of a family (HHV6, HHV7, HHV8, and even 9 and 10 are now being detected) of viruses capable of “reactivation.” (New data may be showing viral reactivation behind supposedly false elevated EBV and CMV.)
➢ Low QIgM. Should be suspicious of high or low QIgM as marker of a stressed immune system—low seems more typical of a possible virus.
While not proving anything, years ago an elevated QIgM meant you looked for leukemia, lymphoma, etc., in an adult.
➢ History of fine or gross motor abnormalities or photosensitivity. Years ago, photosensitivity implied viral infection and/or brain inflammation until proven otherwise. Many of these children (and adults) will have this very significant complaint, and it is ignored.
➢ History of accompanying seizure disorder or abnormal EEG. As discussed, based on lack of associated seizures for many decades in discussions of autism, when this occurs one should be very suspicious about possible viral irritation, irritable foci.
➢ History of regression.
The key principle remains that a healthy immune system is our best defense against viruses, retroviruses, and multiple other potential pathogens or opportunistic organisms. Returning our immune system to healthy, normal function is going to be the key for many interrelated autoimmune, complex neuroimmune, and complex viral disorders. Currently, what I do with The Goldberg Approach is to attack with combined steps, with the goal of both reducing the stresses and removing the stresses attacking the body and the brain. With the now-consistent goal of taking stress off the immune system, trying to give the immune system a chance to become healthier, it would be a major plus to have agents that could more actively help adjust the immune system to a healthier state. It has been my goal, ever since I was exposed to information regarding a new kind of true “immune-modulator,” to create a focus, create an effort to bring these rapidly into development for these disorders, and potentially many other disorders with “autoimmune” or “neuroimmune” components. Unlike all past efforts, the key is not going to be to regulate or push the immune system in one direction or the other, but rather in a very unique manner (reminiscent of nature and a mother’s pregnancy) to help restore a healthy balance to the immune system.
Now the herpes virus family (including CMV—cytomegalovirus, EBV—Epstein-Barr virus, and HZV—chicken pox) is a fascinating one. In medical school when we were taught about herpes simplex (cold sores, vaginal sores), we learned if these viruses went to the brain, you were going to be very ill, or comatose—you could die in a short amount of time. The herpes virus is one of the only viruses that we call DNA-based. Most viruses are what we call RNA viruses. They live and use the cytoplasm of our cells to replicate and survive. Herpes viruses use and live within the DNA, the nucleus of our cells (particularly brain tissue, but also heart, liver, and kidney tissue). This puts these viruses in an entirely different category. In theory these viruses are known to affect our genes and chromosomes and can cause mutations.
With early viral therapy beginning to be directed at these herpes viruses, what seems to be occurring in these children and adults with these disorders is a much more chronic herpes-related infection, far more consistent with what we have learned about a family of what we now call “higher-order herpes viruses”—HHV6, HHV7, and HHV8, and the newly identified 9 and 10. The problem is these are much more sophisticated viruses. They go to the brain, but try to live low-grade. Think of this as stealth, or living below the radar. They want to live off the brain, but not upset the host so much that the immune system tries to kill them or kills the host. Herpes simplex is a very inefficient virus; you kill the host, and you kill yourself, the virus. These higher-order viruses are smarter: let’s keep the host alive, and let’s keep ourselves (the viruses) alive. I have never been exposed to any medical research indicating that a virus living on my brain, particularly within the temporal lobes, is going to be good for me or anyone.
With the work emerging from research on chronic fatigue syndrome in adults, one has to be open to the fact that we may be looking at some type of CMV or Epstein-Barr variant/mutation (rather than just the past concept that elevated Epstein-Barr titers and elevated CMV titers were not real, or just false activations of the immune system). The key is all of these viruses are within the herpes family of viruses, which in a backward sense may be fortuitous, because the way they behave, the way herpes simplex acted, spurred research and development of agents to try to slow down or stop these viruses. While the initial antiviral agents were potentially dangerous or not that effective, there is now a series of agents that, when monitored and dosed correctly, are considered very safe in treatment, generally speaking. This is explainable because the agents work on a mechanism that the herpes virus uses and our human bodies do not use. At the same time, there are certainly stronger, potentially more effective antiviral agents, but they do carry some risk, which I feel is not justified in children. However new, controlled, appropriate trials may be justified to look at them in the future. Presently, doing thing
s very cautiously, I feel limited to the choices of Acyclovir (Zovirax), Valtrex, or Famvir. Contrary to misinformation, these agents are not toxic to the liver, but you do have to watch appropriately and monitor kidney function (which is easy to do with a routine chem panel—what includes a BUN and creatinine). As noted, when one looks at the role of herpes viruses, not only do they go to the brain and the CNS (central nervous system), particularly the temporal lobes, but we now know they also will go to the heart and to the liver, and there is now evidence of passage in kidney transplants. It has been my overwhelming clinical experience, while doing close liver and kidney monitoring, that when these children have liver functions mild or very moderately elevated, it is not because of a medication I may be using, but rather because of a background virus. In fact, it has been my experience, and is certainly not a surprise, that even a cold virus causes stress that can result in mild liver function elevation when a child is just normally sick. When a true toxicity or major viral infection (i.e., hepatitis-related viruses) occurs, the liver functions often will go quite high, significantly above what seems to be common in many of these children. While carefully following liver and kidney functions to document and monitor safety of any agent I will use or prescribe, it has been interesting to note that many of these children will present with “low-grade” liver elevations (often noted but ignored on past tests), in my experience, reflecting a marker for the likelihood of HHV-6 or some other herpes-related virus directly stressing the liver. It has become obvious that rather than the use of pharmaceutical agents causing more stress, by suppressing and trying to stop the virus, one removes stress from the liver (also the brain, potentially the heart). Under the guise of “autism” as physicians the “system” has essentially observed this essentially slow chronic deterioration of the brain, and often physical condition of the patient. Recognized as it should, recognized as NIDS, a medical epidemic, physicians would be expected not to let this continue to happen.
In the early days of this, with good researchers questioning whether the antiviral treatments worked and were indicated, I would start a child on an antiviral, then watch them become brighter, sharper, better connected, then with initial success stop the antiviral, often to see many children begin to fall backward. While I would never approach weaning of an antiviral in this manner today (I do not want to allow any fallback with inadvertent reactivation), this did at the time help convince good researchers that whatever was there, whatever I was treating had to be herpes related!
Recent research
Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome (Science [New York, N.Y.] 2009 Oct 23;326[5952]:585–9. Epub 2009 Oct 8), showing the issue of a retrovirus in adults with chronic fatigue syndrome and a potential finding in these children labeled “autistic” only heightens the issues of viral activation, immune reactivity, and what we have learned from the study of HIV as “neuroimmune inflammation.” The discussions have already begun: how many other retroviruses may be involved with this disorder, or other complex immune disorders. This has emphasized the urgency of understanding and recognizing what is a disease process in these children (as well as the adults) and rapidly attempting to develop more targeted therapies to help.
While it’s safe to say most children with the aforementioned symptoms are going to be exhibiting neuroimmune dysfunction, not every child is going to have an active virus. When a child has fine or gross motor issues, has had regression in behaviors and skills, has a seizure, or has an abnormal EEG, the likelihood of a virus, particular a herpes-related virus, being present is extremely high.
When approaching therapy for these chronic viruses, it is very obviously consistent with medical school teaching that an antibacterial agent, an antiviral, cannot be expected to do the whole job; one must have immune system help. If you are using an antiviral at correct therapeutic levels and not controlling immune reactivity and the ongoing stresses on the system, the chances that the body will be able to take control of the virus are very low. You may slow it up, you may suppress the virus, but you’re not ultimately winning the fight; you will not be able then to do without the antiviral until that body can take control.
This principle is consistent with medical school teaching, illustrated by an example that in an era that an organism called pneumococcus (now a very resistant bacterial infection) was so sensitive to penicillin that the joke was you could breathe penicillin and the organism would die; yet even then, a black child was still at risk for severe septic complications, particularly of the hip and bones. This occurred because that child’s immune system, due to a genetic issue, was not handling that organism correctly. This same principle applies to the issue in infectious disease many times over, and in particular applies to these children. If you’re going to use a medication, you must also work to have the immune system helping, becoming an ally, part of a battle for control, restoration of balance, and health. It is important to emphasize that the use of antivirals and choice is based on a combination as discussed of safety and efficacy. If someone was in a hospital, with an overwhelming infection with CMV, HHV-6, or other serious herpes virus, one would turn to newer, stronger, potentially more toxic antiviral agents. In these children (and adults), one is not dealing with an overwhelming acute infection; instead it has a much more slow, insidious, and chronic nature. The key for now is using safe antivirals to try to suppress the virus, allowing the patient’s own immune system a better chance to gain control.
Based on these steps, we are beginning to implement what we call The Goldberg Approach to avoid the mistakes being made by many. Inconsistent with good infectious disease principles, many physicians advising parents and saying they know how to treat this disorder will start and stop antivirals and/or antifungals without using blood tests to accurately monitor what they are doing, in fact whether they are even succeeding in their goals. When an antiviral is needed, you need to monitor the patient to make sure that ultimately you are getting suppression of the elevated titers (when they are present as markers), restoration of low WBCs (a common issue with these chronic viral infections), and restoration of NK cell function. To do this realistically requires a combination of working to help the immune system become healthier, clearing up the diet, and using the antiviral. It has been my experience over many years that I can reach a point where the virus may be inactive, but the immune system is not yet strong enough to take over the full job if I withdraw the antiviral. In the early days, when titers and immune systems seemed better, I would stop the antiviral. Unfortunately many of those children would then regress back into their “fog,” with evidence of viral reactivation occurring. Therefore, I no longer do that. Instead, when titers are down and the immune system and the child seem healthy, I will wean down the antiviral, carefully monitoring for signs of reactivation of problems from doing that. If everything stays good, then some children certainly can come off the antiviral. Realistically this is not a short course of therapy, but just like bacteria, these viruses are becoming more resistant due to the multiple, ineffective, misuse of antivirals. These short courses, which may often “stir up” these slow viruses, are potentially just as harmful, and likely even more harmful, than not treating at all.
When you are going to try and help the body and brain become healthy, the key is nature, our own built-in defense, the immune system. When healthy, the immune system is the component that can handle viruses and even retroviruses (in theory we all have some in our bodies, but we control them, keeping them dormant or inactive when our immune systems are healthy). Ironically much of this ability is tied in to our NK cell system, the same system that protects children and adults from cancer and other serious disorders. This physician believes the major rise in childhood and adult cancers over the last decades, often in younger individuals, is likely related to this same concept of NIDS, with more and more “neurotypical” children and adults walking around in a stressed immune state. It turns out the NK (natural killer) ce
lls are being directly attacked by the XMRV retrovirus (and most likely other yet undefined viruses as well). The more we learn, the more obvious it is becoming that perhaps the only way to really stop the “cancer epidemic,” to lower significantly the cost and stresses on our medical system and families, is to come back to logic, common sense. Let’s start looking at how children and adults can have healthier immune systems again. Thankfully my pediatric training was focused on preventive medicine. Over the years I would frequently tell a parent that the goal of therapy was not to save their child with a serious complication in an intensive care unit; rather, the real goal was not to have the child in the hospital at all.
➢ Antivirals:
Valtrex
➢ 1 gm tid (for adult 70 kg or above) ➢ Proportion based on child’s weight. ➢ i.e., 250 tid for 35 lb, 500 tid for 70 lb, etc.
or
Famvir
➢ 500 mg tid for 70 kg adult ➢ Proportion based on child’s weight. ➢ i.e., 125 mg bid for 35 lb, 250 mg bid 70 lb., etc.
or
Zovirax/Acyclovir
➢ 20 mg/kg/dose qid—5x/day (better)
Antifungals
It has always been a very difficult position to address clinically the possible role of fungi in the pathophysiology of any disease state, much less the symptoms of autistic dysfunction/NIDS seen in these children. Clinically, one presently looks for medical or lab support via low NK cell activity, elevated viral titers (as markers of a stressed immune system), and other markers for a stressed system (newer markers should make this justification much easier). Sometimes clinically one may see thrush, unexplained dermatitis, or ongoing fatigue.
The Myth of Autism Page 10
