Sphingolin
By 4muskateers
06-01-08
Sphingolin
By 4muskateers
04-15-08
Before we discuss other treatments, is IVIG commonly administered or would a parent have a hard time finding someone to do it?
It is not commonly administered. Remember, it is an experimental treatment. Also, not every physician who deals with autistic children is familiar with this research. Physicians dealing with autism are often psychiatrists or neurologists, and they may not get involved in the autoimmune function with autism unless they have been to a conference on the topic or decided to review the literature. The more we talk about these issues the more doctors will hear about it, and it will become a good treatment possibility.
There are two other approaches that I think are important, but I must emphasize that clinical treatment is not well established. One is the use of immune suppressor anti-inflammatory agents, namely steroids such as ACTH or prednisone; this is a conventional approach to treating autoimmunity. I have heard firsthand from a number of parents of autistic children that their child was given steroids soon after the diagnosis, and symptoms improved. The treatment was later discontinued because they were concerned there could be toxicity on a long-term basis, and I understand that. But if an autoimmune factor for autism is determined through research, then there may be some room for treating children with steroids; there was one study from Europe that supported this approach (*see note). Again, the idea is to first identify what is wrong before pursuing the treatment.
The other treatment, which readers must understand is based on anecdotal reports, is Sphingolin treatment. Sphingolin is a trade name for a bovine brain myelin preparation. This commercial product is sold as a nutritional supplement and can be used to correct the immune response against the myelin basic protein. So, if the child is found to have antibodies to myelin basic protein or even neurofilaments, which are rich in myelin components, then you may think about giving this treatment. Many of those who have done so are noticing very positive responses. I have parents who insist they would not consider taking their autistic child off this treatment; I have a folder full of parent correspondence on this, but studies are yet to be done. The important thing is to first check whether the child has antibodies to myelin basic protein or neurofilament. If there are no antibodies, don't do this treatment.
We do not yet know how Sphingolin works, but the mechanism of oral tolerance induction might be involved. While the exact mechanism of oral tolerance is not known, it is an exciting topic of research for hard-core immunologists today. Let’s say that we have a situation where the autoimmune response to myelin is being defined reasonably well in autistic children. When you feed autoantigens—in this case the Sphingolin—to these children, it can result in remarkable recovery. This is anecdotal but recorded not only by school psychologists, teachers, and parents, but also by physicians who are involved. This is very exciting. Dosage should not be high; it should be quite low to have this benefit to the patient. I'm not a physician and don't prescribe treatment, so I am not advising your readers on a specific approach. But from a research standpoint, in my opinion, the adult dose is generally two capsules per day, hence the child would take only one or one-half. We are trying to raise funds for a clinical trial of this.
What is the plasmapheresis technique that you mentioned near the beginning of the interview when speaking of OCD?
This is an interesting modality. It was designed many years ago as a clearance mechanism. What happens is that pathogenic molecules such as viruses, or immune complexes, or autoantibodies circulate in the blood. The idea was to filter them out. This therapy has been used for patients receiving bone marrow transplants as well as for patients with autoimmune idiopathic thrombocytopenic purpura and those with severe infections. It also has a role for autoimmune problems, for example, with OCD as mentioned previously. To receive the therapy, a patient is connected to a cell separator and plasma is allowed to go through a filtration system much like in kidney dialysis. But let me make the point here that this procedure has not been investigated in autism. I have suggested this as one option that should be considered if all other immune problems exist.
I suggest that any of these treatments should be evaluated initially as a single approach only. I know some people are combining different treatments, but then the response may be paradoxical and it is difficult to explain what is going on.
Where can someone find a lab that does the tests that differentiate the type of autoimmune response that may be taking place?
We initiated "autoimmune testing" in autism and to my knowledge the lab here at the University of Michigan is the only lab that tests the way we do. They could call my number or write to me for information.
We have printed information in Latitudes from physicians and families on the allergic response in autism, Tourette syndrome, learning problems, and ADD / ADHD. This response includes food sensitivity, traditional environmental allergens, and chemical sensitivity. How does this concept fit with your model?
Allergies to foods are widely recognized in autistic children, and allergies are immune responses. Some of those are also related to an autoimmune phenomenon--at least new research is telling us that. Whether allergy to gluten or casein, as we often see in children with autism, is connected to autoimmunity--is it a consequence or the cause;' of it-we don't know. But when hearing from parents, one gets the impression that removal of these foods from the diet helped the child's general health improve more than it improved the actual autistic characteristics. When you try to overcome allergy to foods, you bring about a change in the digestive tract and that results in more normal health overall. But it has been my experience that this does not necessarily improve the behavior as much as if you administer autoimmune therapy such as IVIG therapy or Sphingolin treatment; these actually produce changes in behavioral characteristics. That's the main difference, and we are bringing about changes that we can explain biologically.
Speaking of gastrointestinal function, the use of secretin therapy, which has received considerable attention lately, is also worthy of additional research. In my opinion it is not directly connected to autoimmunity. However, based on our pilot study of nine children who received secretin administered by Dr. Jeff Bradstreet of Palm Bay, Florida, we found that about half the children showed changes in the antibody titer to brain proteins like myelin basic protein and neurofilaments; measles antibodies did not change. And what is really unique is that the serotonin levels chanted with the secretin therapy. Secretin increased the serotonin levels in some but not all of them, and as a group they had an increase of about 35%, which is quite remarkable. I believe secretin is working more through mechanisms involving the neurotransmitters than by affecting the autoimmune response. But if it did affect the autoimmune response, that would not surprise me, because we know that a lot of gastrointestinal peptides-and secretin is no exception to this-are known to influence and modify neuronal activities, meaning they influence the pathways of neurotransmitters and neuropeptides, and thereby affect the brain's function.
*Buitelaar, J. K. et al, "The use of adrenocorticotrophic hormone (4-9) analog ORG 2766 in autistic children: effects on the organization of behavior." Biological Psychiatry vol. 31, 1992, pp. 1119-1129.
"Tourette syndrome is yet another neuropsychiatric disorder that may be associated with antineuronal antibodies… [After investigation, Swedo and Kiessling have said,] ‘it is possible that a single process of antineuronal antibody-mediated neuro-immunologic dysfunction could result in some patients in such diverse symptomotology as chorea, tics or other abnormal movements, hyperactivity, and obsessions and compulsions. A strong genetic component is thought to be involved in OCD, TS, and tics, but what is inherited might be an inability of the immune system to distinguish between neural tissue and certain components in the cell membrane of group A beta-hemolytic streptococcus.’"
"Autoimmunity and Neurologic Disorders," Medical Sciences Bulletin, September 1994
www.traders/co.uk/insulintrust/autoimmu.htm
By 4muskateers
04-15-08
Before we discuss other treatments, is IVIG commonly administered or would a parent have a hard time finding someone to do it?
It is not commonly administered. Remember, it is an experimental treatment. Also, not every physician who deals with autistic children is familiar with this research. Physicians dealing with autism are often psychiatrists or neurologists, and they may not get involved in the autoimmune function with autism unless they have been to a conference on the topic or decided to review the literature. The more we talk about these issues the more doctors will hear about it, and it will become a good treatment possibility.
There are two other approaches that I think are important, but I must emphasize that clinical treatment is not well established. One is the use of immune suppressor anti-inflammatory agents, namely steroids such as ACTH or prednisone; this is a conventional approach to treating autoimmunity. I have heard firsthand from a number of parents of autistic children that their child was given steroids soon after the diagnosis, and symptoms improved. The treatment was later discontinued because they were concerned there could be toxicity on a long-term basis, and I understand that. But if an autoimmune factor for autism is determined through research, then there may be some room for treating children with steroids; there was one study from Europe that supported this approach (*see note). Again, the idea is to first identify what is wrong before pursuing the treatment.
The other treatment, which readers must understand is based on anecdotal reports, is Sphingolin treatment. Sphingolin is a trade name for a bovine brain myelin preparation. This commercial product is sold as a nutritional supplement and can be used to correct the immune response against the myelin basic protein. So, if the child is found to have antibodies to myelin basic protein or even neurofilaments, which are rich in myelin components, then you may think about giving this treatment. Many of those who have done so are noticing very positive responses. I have parents who insist they would not consider taking their autistic child off this treatment; I have a folder full of parent correspondence on this, but studies are yet to be done. The important thing is to first check whether the child has antibodies to myelin basic protein or neurofilament. If there are no antibodies, don't do this treatment.
We do not yet know how Sphingolin works, but the mechanism of oral tolerance induction might be involved. While the exact mechanism of oral tolerance is not known, it is an exciting topic of research for hard-core immunologists today. Let’s say that we have a situation where the autoimmune response to myelin is being defined reasonably well in autistic children. When you feed autoantigens—in this case the Sphingolin—to these children, it can result in remarkable recovery. This is anecdotal but recorded not only by school psychologists, teachers, and parents, but also by physicians who are involved. This is very exciting. Dosage should not be high; it should be quite low to have this benefit to the patient. I'm not a physician and don't prescribe treatment, so I am not advising your readers on a specific approach. But from a research standpoint, in my opinion, the adult dose is generally two capsules per day, hence the child would take only one or one-half. We are trying to raise funds for a clinical trial of this.
What is the plasmapheresis technique that you mentioned near the beginning of the interview when speaking of OCD?
This is an interesting modality. It was designed many years ago as a clearance mechanism. What happens is that pathogenic molecules such as viruses, or immune complexes, or autoantibodies circulate in the blood. The idea was to filter them out. This therapy has been used for patients receiving bone marrow transplants as well as for patients with autoimmune idiopathic thrombocytopenic purpura and those with severe infections. It also has a role for autoimmune problems, for example, with OCD as mentioned previously. To receive the therapy, a patient is connected to a cell separator and plasma is allowed to go through a filtration system much like in kidney dialysis. But let me make the point here that this procedure has not been investigated in autism. I have suggested this as one option that should be considered if all other immune problems exist.
I suggest that any of these treatments should be evaluated initially as a single approach only. I know some people are combining different treatments, but then the response may be paradoxical and it is difficult to explain what is going on.
Where can someone find a lab that does the tests that differentiate the type of autoimmune response that may be taking place?
We initiated "autoimmune testing" in autism and to my knowledge the lab here at the University of Michigan is the only lab that tests the way we do. They could call my number or write to me for information.
We have printed information in Latitudes from physicians and families on the allergic response in autism, Tourette syndrome, learning problems, and ADD / ADHD. This response includes food sensitivity, traditional environmental allergens, and chemical sensitivity. How does this concept fit with your model?
Allergies to foods are widely recognized in autistic children, and allergies are immune responses. Some of those are also related to an autoimmune phenomenon--at least new research is telling us that. Whether allergy to gluten or casein, as we often see in children with autism, is connected to autoimmunity--is it a consequence or the cause;' of it-we don't know. But when hearing from parents, one gets the impression that removal of these foods from the diet helped the child's general health improve more than it improved the actual autistic characteristics. When you try to overcome allergy to foods, you bring about a change in the digestive tract and that results in more normal health overall. But it has been my experience that this does not necessarily improve the behavior as much as if you administer autoimmune therapy such as IVIG therapy or Sphingolin treatment; these actually produce changes in behavioral characteristics. That's the main difference, and we are bringing about changes that we can explain biologically.
Speaking of gastrointestinal function, the use of secretin therapy, which has received considerable attention lately, is also worthy of additional research. In my opinion it is not directly connected to autoimmunity. However, based on our pilot study of nine children who received secretin administered by Dr. Jeff Bradstreet of Palm Bay, Florida, we found that about half the children showed changes in the antibody titer to brain proteins like myelin basic protein and neurofilaments; measles antibodies did not change. And what is really unique is that the serotonin levels chanted with the secretin therapy. Secretin increased the serotonin levels in some but not all of them, and as a group they had an increase of about 35%, which is quite remarkable. I believe secretin is working more through mechanisms involving the neurotransmitters than by affecting the autoimmune response. But if it did affect the autoimmune response, that would not surprise me, because we know that a lot of gastrointestinal peptides-and secretin is no exception to this-are known to influence and modify neuronal activities, meaning they influence the pathways of neurotransmitters and neuropeptides, and thereby affect the brain's function.
*Buitelaar, J. K. et al, "The use of adrenocorticotrophic hormone (4-9) analog ORG 2766 in autistic children: effects on the organization of behavior." Biological Psychiatry vol. 31, 1992, pp. 1119-1129.
"Tourette syndrome is yet another neuropsychiatric disorder that may be associated with antineuronal antibodies… [After investigation, Swedo and Kiessling have said,] ‘it is possible that a single process of antineuronal antibody-mediated neuro-immunologic dysfunction could result in some patients in such diverse symptomotology as chorea, tics or other abnormal movements, hyperactivity, and obsessions and compulsions. A strong genetic component is thought to be involved in OCD, TS, and tics, but what is inherited might be an inability of the immune system to distinguish between neural tissue and certain components in the cell membrane of group A beta-hemolytic streptococcus.’"
"Autoimmunity and Neurologic Disorders," Medical Sciences Bulletin, September 1994
www.traders/co.uk/insulintrust/autoimmu.htm
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