Guest guest Posted July 4, 2004 Report Share Posted July 4, 2004 > Wanted to share a recently viewed public service announcement for > P.I. Primary Immunodeficiency...is it just me or does this appear to > be another engineered epidemic? > > Here is the intro: http://info4pi.org/ > > Health experts now understand that some illnesses, whose causes > previously could not be explained, are actually the result of genetic > defects in the immune system, known as Primary Immunodeficiencies. > Primary Immunodeficiency is an umbrella term for more than 100 > genetic defects that are characterized by illnesses that are > recurring, persistent, debilitating, and chronic > > > Everyone should know the following vital facts about PI: > > Primary Immunodeficiency diseases can go undetected because they do > not have unique symptoms of their own. Rather, they appear > as " ordinary " infections, often of the sinuses, ears, or lungs. They > can also cause gastrointestinal problems or inflammation of the > joints. Families and doctors are often unaware that the troubling > conditions they are dealing with are actually rooted in a defect of > the immune system. > > Primary Immunodeficiency is very different from Acquired Immune > Deficiency (AIDS) and they should not be confused with each other. > Although both involve the immune system, Primary Immunodeficiency is > genetic, or " built into " a person's body by their genes. It's like > the color of your eyes: you don't catch it and you can't change it. > AIDS, on the other hand, is acquired and is an infectious disease, > rather than a genetic defect. > > > Research in Primary Immunodeficiency is central to progress in > immunology. As medical science further illuminates the complexities > of the immune system, patients are benefiting from a host of cutting- > edge diagnostic tools and treatments. The problems presented by > genetic immunodeficiency disease have challenged researchers and > immunologists to reach improved diagnoses, treatments, and innovative > new therapies. Promising results are being reported for > immunodeficient patients using intravenous gamma globulin, bone > marrow transplantation, enzyme replacement and genetically engineered > proteins such as gamma interferon Wow! This is very interesting to me. I have a 23 mos. old son who is asd. In the research for his treatments, I have had many ah-ha moments to his older brother, now 10, who had huge sensory issues, 10 mos. of the same ear infection, delayed speech, and severe behavioral issues. He was my first, and we really thought back then that he was just a difficult child. Now, I know the difference. My point is, at 2.5 yrs. he was dx. with ITP(Immune thrombosis/deficiency), where the spleen attacks the platelets, and his count was down to 20,000 (should have been in the 400,000 range if I remember correctly). He was admitted into the hospital, and given IV gamma globulin. His counts rose, and we never had another problem with it, though his counts were monitored for 2 yrs. afterwards. Just within the last two weeks, I said to my husband, I wonder if Dylan(my 10 yr old), was showing signs of ASD, and his ITP treatment reversed things??? He had chronic diareah as well, that disapated after this treatment. We always thought it went away b/c around the same time he had tubes put in his ears, and therefore, was off the antibiotics? I also, have Crohns Disease, again linking the auto immune considerations. I don't know, just really thinking aloud... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2004 Report Share Posted July 4, 2004 Tracey, When I first saw the commercial and went to their web site, I noticed that their checklist shared many traits associated with profiles of children with ASD, except without the autism. (skewed immune IgG and IgA, GI issues, yeast overgrowth, and fibro) They also stated IVIG or immunoglobulin infusions were used to treat these conditions, which are also used to treat the same issues in ASD children. So, this makes me wonder if the immune disorders are not genetic, but are " acquired " , from either thimerosal or viral components of vaccines. (Seems I recall reading that either could produce these results) Mostly, I am wondering how to correct it. If anyone has information or experience, positive or negative, regarding IVIG or immunoglobulin, I would really appreciate hearing about it. My ds had early dx ASD - which I think he has mostly outgrown - but does have tourettes for which IVIG treatment has been recommended, however, since it is a pooled blood product, I wonder if I should only consider it as a last resort. While I am posting anyway - I would also be interested in hearing about anyone's experience with Tranfer Factor, specifically Chisolm Transfer Factor, in relation to recovering the immune system post vaccination. TIA, Diane PS - I am glad your older child is doing so well, and you bring up a very interesing point regarding the fact that you may have remediated spectrum issues with him, albeit inadvertantly, by having him undergo immunoglobulin therapy. Do you think it would be a consideration for your younger son? Do either have metal issues or PANDAS? Best wishes... > Wow! This is very interesting to me. I have a 23 mos. old son who is > asd. In the research for his treatments, I have had many ah-ha > moments to his older brother, now 10, who had huge sensory issues, 10 > mos. of the same ear infection, delayed speech, and severe behavioral > issues. He was my first, and we really thought back then that he was > just a difficult child. Now, I know the difference. My point is, at > 2.5 yrs. he was dx. with ITP(Immune thrombosis/deficiency), where the > spleen attacks the platelets, and his count was down to 20,000 > (should have been in the 400,000 range if I remember correctly). He > was admitted into the hospital, and given IV gamma globulin. His > counts rose, and we never had another problem with it, though his > counts were monitored for 2 yrs. afterwards. Just within the last two > weeks, I said to my husband, I wonder if Dylan(my 10 yr old), was > showing signs of ASD, and his ITP treatment reversed things??? He had > chronic diareah as well, that disapated after this treatment. We > always thought it went away b/c around the same time he had tubes put > in his ears, and therefore, was off the antibiotics? I also, have > Crohns Disease, again linking the auto immune considerations. I don't > know, just really thinking aloud... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2004 Report Share Posted July 4, 2004 I sense that the researchers are not so much announcing new findings but are instead recategorizing rhetoric. There have long been " primary immunodeficiency syndromes " - and generally, those are very severe, thus much sickness, thus parents and physicians identify such individuals. The article seems to be calling attention to the less severe but nonetheless " minor " immune glitches, even such as those documented in autism by Warren et al. Increasingly, genetic research is identifying " minor " glitches, and they usually don't guarantee an adverse effect unless an environmental hit or several pushes the person's physiology over the edge and into prolonged illness. An example is the missing alleles of a GSH-transferase gene whereby the individual has increased sensitivity to thimerosal (Westphal and colleagues). Of course, the new emphasis on " primary " immune deficiencies will probably not dare look at the ramifications of genes that might implicate mercury or thimerosal. Oh well, at least any new research into immune glitches will be instructive. gacreeker wrote: >Wanted to share a recently viewed public service announcement for >P.I. Primary Immunodeficiency...is it just me or does this appear to >be another engineered epidemic? > >Here is the intro: http://info4pi.org/ > >Health experts now understand that some illnesses, whose causes >previously could not be explained, are actually the result of genetic >defects in the immune system, known as Primary Immunodeficiencies. >Primary Immunodeficiency is an umbrella term for more than 100 >genetic defects that are characterized by illnesses that are >recurring, persistent, debilitating, and chronic > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2004 Report Share Posted July 5, 2004 Thanks for sharing your thoughts - that was pretty much " my take " regarding the " new " immune disorder - I appreciate reference to GSH, Warren info and will put that on my reading list As always, I am interested in exploring new treatment options, and immune-metabolic issues may be particularly relevant... Thanks, Diane > I sense that the researchers are not so much announcing new findings but > are instead recategorizing rhetoric. There have long been " primary > immunodeficiency syndromes " - and generally, those are very severe, thus > much sickness, thus parents and physicians identify such individuals. > The article seems to be calling attention to the less severe but > nonetheless " minor " immune glitches, even such as those documented in > autism by Warren et al. Increasingly, genetic research is > identifying " minor " glitches, and they usually don't guarantee an > adverse effect unless an environmental hit or several pushes the > person's physiology over the edge and into prolonged illness. An example > is the missing alleles of a GSH-transferase gene whereby the individual > has increased sensitivity to thimerosal (Westphal and colleagues). Of > course, the new emphasis on " primary " immune deficiencies will probably > not dare look at the ramifications of genes that might implicate mercury > or thimerosal. > > Oh well, at least any new research into immune glitches will be instructive. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2004 Report Share Posted July 5, 2004 Hi Diane, I am so new to this, and just begining. I want to test for heavy metals (and don't know what PANDAS is). Last week Ty had bloodwork for Serum amino acids, organic urine acids, lead, and TSH. I haven't gotten the results back yet, and as crazy as this sounds, not sure what all that will even tell me. I feel like I am on an endless learning curve, and can't catch up! Very frustrated and alone. We have been concentrating on getting his therapies in place (ST, OT, and ABA), and he has been GFCF for 6 mos, and now 6 wks. SCD. All are showing remarkable progress. He also began supplements 3 mos. ago. The metal toxicity has now become my new mission, but I don't know where to start. We stopped all vax at 12mos. He has had 3 DPaT's at 2m/4m/6m, 3 HIB's at 2m/4m/12m, 2 IPV's at 2m /4m, and 3 PCV's 4m/9m/12m, and Varicella at 12m. He never had the 4th DPaT, or a flu shot, they were out god bless, and I never brought him back! I would appreciate any help in begining testing. TIA! > Tracey, > > > When I first saw the commercial and went to their web site, I noticed > that their checklist shared many traits associated with profiles of > children with ASD, except without the autism. (skewed immune IgG and > IgA, GI issues, yeast overgrowth, and fibro) They also stated IVIG or > immunoglobulin infusions were used to treat these conditions, which > are also used to treat the same issues in ASD children. > > So, this makes me wonder if the immune disorders are not genetic, but > are " acquired " , from either thimerosal or viral components of > vaccines. (Seems I recall reading that either could produce these > results) Mostly, I am wondering how to correct it. > > If anyone has information or experience, positive or negative, > regarding IVIG or immunoglobulin, I would really appreciate hearing > about it. My ds had early dx ASD - which I think he has mostly > outgrown - but does have tourettes for which IVIG treatment has been > recommended, however, since it is a pooled blood product, I wonder if > I should only consider it as a last resort. > > While I am posting anyway - I would also be interested in hearing > about anyone's experience with Tranfer Factor, specifically Chisolm > Transfer Factor, in relation to recovering the immune system post > vaccination. > > TIA, > Diane > > PS - I am glad your older child is doing so well, and you bring up a > very interesing point regarding the fact that you may have remediated > spectrum issues with him, albeit inadvertantly, by having him undergo > immunoglobulin therapy. Do you think it would be a consideration for > your younger son? Do either have metal issues or PANDAS? > Best wishes... > > > > > > > > > Wow! This is very interesting to me. I have a 23 mos. old son who > is > > asd. In the research for his treatments, I have had many ah-ha > > moments to his older brother, now 10, who had huge sensory issues, > 10 > > mos. of the same ear infection, delayed speech, and severe > behavioral > > issues. He was my first, and we really thought back then that he > was > > just a difficult child. Now, I know the difference. My point is, at > > 2.5 yrs. he was dx. with ITP(Immune thrombosis/deficiency), where > the > > spleen attacks the platelets, and his count was down to 20,000 > > (should have been in the 400,000 range if I remember correctly). He > > was admitted into the hospital, and given IV gamma globulin. His > > counts rose, and we never had another problem with it, though his > > counts were monitored for 2 yrs. afterwards. Just within the last > two > > weeks, I said to my husband, I wonder if Dylan(my 10 yr old), was > > showing signs of ASD, and his ITP treatment reversed things??? He > had > > chronic diareah as well, that disapated after this treatment. We > > always thought it went away b/c around the same time he had tubes > put > > in his ears, and therefore, was off the antibiotics? I also, have > > Crohns Disease, again linking the auto immune considerations. I > don't > > know, just really thinking aloud... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2004 Report Share Posted July 5, 2004 Tracey, I am answering " on list " because many others in this group are WAY more knowledgeable about specific testing and treatment protocols than I, and hopefully they will respond with their direction and encouragement as well. Since Ty is only 23 months old, I believe you should be very optimistic about his response to various treatment protocols. Feel free to share test results with the group as they become available. If you are just starting out, check out the " files " section listed on the left hand side of this page. Enormous amount of information and links to keep you busy for weeks. If you are pursuing metals testing you are in the right group and Moria is a great resource person! I found Andy's book - Amalgam Illness, Diagnosis and Treatment helpful -but forget the website to order it - but it is available in the " links " section listed on the left hand side of this page too. Also there are many other good books and web sites, the ones I find most helpful, " off the top of my head " : Autism Research Institute - Bernard Rimland DAN Defeat Autism Now Kirkman's Laboratories - Nutritional Supplements - send free catalog Biological Treatments for Autism - Shaw Great Plains Laboratories - send free catalog with explanation of test Smokey Mountain Diagnostic Laboratories - send free catalog with explanation of test Children With Starving Brains - Dr. McCandless & Theresa Binstock What your Doctor May Not Tell You About Vaccines - Cave Also Dana's Website - (Dana from this list) Also recent publications or presentations from Drs. Grier, Dr. Bradstreet and Kartzinel,...and too many more to mention I am happy you are already having success with supplements and diet changes, continued success and best wishes ... Diane PS PANDAS - Pediantric Autoimmune Neurological Disorders Associated with Strept. ie neuro problems associated with strept > > Tracey, > > > > > > When I first saw the commercial and went to their web site, I > noticed > > that their checklist shared many traits associated with profiles of > > children with ASD, except without the autism. (skewed immune IgG > and > > IgA, GI issues, yeast overgrowth, and fibro) They also stated IVIG > or > > immunoglobulin infusions were used to treat these conditions, which > > are also used to treat the same issues in ASD children. > > > > So, this makes me wonder if the immune disorders are not genetic, > but > > are " acquired " , from either thimerosal or viral components of > > vaccines. (Seems I recall reading that either could produce these > > results) Mostly, I am wondering how to correct it. > > > > If anyone has information or experience, positive or negative, > > regarding IVIG or immunoglobulin, I would really appreciate hearing > > about it. My ds had early dx ASD - which I think he has mostly > > outgrown - but does have tourettes for which IVIG treatment has > been > > recommended, however, since it is a pooled blood product, I wonder > if > > I should only consider it as a last resort. > > > > While I am posting anyway - I would also be interested in hearing > > about anyone's experience with Tranfer Factor, specifically Chisolm > > Transfer Factor, in relation to recovering the immune system post > > vaccination. > > > > TIA, > > Diane > > > > PS - I am glad your older child is doing so well, and you bring up > a > > very interesing point regarding the fact that you may have > remediated > > spectrum issues with him, albeit inadvertantly, by having him > undergo > > immunoglobulin therapy. Do you think it would be a consideration > for > > your younger son? Do either have metal issues or PANDAS? > > Best wishes... > > > > > > > > > > > > > > > > > Wow! This is very interesting to me. I have a 23 mos. old son who > > is > > > asd. In the research for his treatments, I have had many ah-ha > > > moments to his older brother, now 10, who had huge sensory > issues, > > 10 > > > mos. of the same ear infection, delayed speech, and severe > > behavioral > > > issues. He was my first, and we really thought back then that he > > was > > > just a difficult child. Now, I know the difference. My point is, > at > > > 2.5 yrs. he was dx. with ITP(Immune thrombosis/deficiency), where > > the > > > spleen attacks the platelets, and his count was down to 20,000 > > > (should have been in the 400,000 range if I remember correctly). > He > > > was admitted into the hospital, and given IV gamma globulin. His > > > counts rose, and we never had another problem with it, though his > > > counts were monitored for 2 yrs. afterwards. Just within the last > > two > > > weeks, I said to my husband, I wonder if Dylan(my 10 yr old), was > > > showing signs of ASD, and his ITP treatment reversed things??? He > > had > > > chronic diareah as well, that disapated after this treatment. We > > > always thought it went away b/c around the same time he had tubes > > put > > > in his ears, and therefore, was off the antibiotics? I also, have > > > Crohns Disease, again linking the auto immune considerations. I > > don't > > > know, just really thinking aloud... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2004 Report Share Posted July 5, 2004 Diane, Thanks so much! I did go on Great Plains Lab website and got good explanations of the tests I just recently had run the other day. And I guess I am lucky in the regard that my Pediatrician is an Allergy specialists, and is willing to run pretty much anything I request. I called him this morning, and he said after this initial set of results, he will move on to metals testing! He just has a tendancy to sometimes talk over my head, and with Ty there, I always walk away confused..LOL! I am looking into getting an appt. with Dr Kendal who runs the Neuro Sensory Enhancement Center right here where I live in Austin. I think I am going to bring my 10 yr old too, who still has some sensory issues. Dr , from what I understand, also does chelation. And Ty will be seeing another Dr locally late this month who is handling his supplements, and will have the results from his food allergy assay that was done a few months ago. So I guess I am on the right track, somehow..lol.. Thanks again for your help! > > > Tracey, > > > > > > > > > When I first saw the commercial and went to their web site, I > > noticed > > > that their checklist shared many traits associated with profiles > of > > > children with ASD, except without the autism. (skewed immune IgG > > and > > > IgA, GI issues, yeast overgrowth, and fibro) They also stated > IVIG > > or > > > immunoglobulin infusions were used to treat these conditions, > which > > > are also used to treat the same issues in ASD children. > > > > > > So, this makes me wonder if the immune disorders are not genetic, > > but > > > are " acquired " , from either thimerosal or viral components of > > > vaccines. (Seems I recall reading that either could produce these > > > results) Mostly, I am wondering how to correct it. > > > > > > If anyone has information or experience, positive or negative, > > > regarding IVIG or immunoglobulin, I would really appreciate > hearing > > > about it. My ds had early dx ASD - which I think he has mostly > > > outgrown - but does have tourettes for which IVIG treatment has > > been > > > recommended, however, since it is a pooled blood product, I > wonder > > if > > > I should only consider it as a last resort. > > > > > > While I am posting anyway - I would also be interested in > hearing > > > about anyone's experience with Tranfer Factor, specifically > Chisolm > > > Transfer Factor, in relation to recovering the immune system post > > > vaccination. > > > > > > TIA, > > > Diane > > > > > > PS - I am glad your older child is doing so well, and you bring > up > > a > > > very interesing point regarding the fact that you may have > > remediated > > > spectrum issues with him, albeit inadvertantly, by having him > > undergo > > > immunoglobulin therapy. Do you think it would be a consideration > > for > > > your younger son? Do either have metal issues or PANDAS? > > > Best wishes... > > > > > > > > > > > > > > > > > > > > > > > > > Wow! This is very interesting to me. I have a 23 mos. old son > who > > > is > > > > asd. In the research for his treatments, I have had many ah- ha > > > > moments to his older brother, now 10, who had huge sensory > > issues, > > > 10 > > > > mos. of the same ear infection, delayed speech, and severe > > > behavioral > > > > issues. He was my first, and we really thought back then that > he > > > was > > > > just a difficult child. Now, I know the difference. My point > is, > > at > > > > 2.5 yrs. he was dx. with ITP(Immune thrombosis/deficiency), > where > > > the > > > > spleen attacks the platelets, and his count was down to 20,000 > > > > (should have been in the 400,000 range if I remember > correctly). > > He > > > > was admitted into the hospital, and given IV gamma globulin. > His > > > > counts rose, and we never had another problem with it, though > his > > > > counts were monitored for 2 yrs. afterwards. Just within the > last > > > two > > > > weeks, I said to my husband, I wonder if Dylan(my 10 yr old), > was > > > > showing signs of ASD, and his ITP treatment reversed things??? > He > > > had > > > > chronic diareah as well, that disapated after this treatment. > We > > > > always thought it went away b/c around the same time he had > tubes > > > put > > > > in his ears, and therefore, was off the antibiotics? I also, > have > > > > Crohns Disease, again linking the auto immune considerations. I > > > don't > > > > know, just really thinking aloud... > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2004 Report Share Posted July 6, 2004 > Also Dana's Website - (Dana from this list) My site http://www.danasview.net/ Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 > Hi Diane, > I am so new to this, and just begining. I want to test > for heavy metals (and don't know what PANDAS is). > Last week Ty had bloodwork for Serum amino acids, organic > urine acids, lead, and TSH. I haven't gotten the results > back yet, and as crazy as this sounds, not sure what all > that will even tell me. I feel like I am on an endless > learning curve, and can't catch up! Very frustrated and > alone. We have been concentrating on getting his therapies > in place (ST, OT, and ABA), and he has been GFCF for 6 mos, > and now 6 wks. SCD. All are showing remarkable progress. He > also began supplements 3 mos. ago. The metal toxicity has > now become my new mission, but I don't know where to start. > We stopped all vax at 12mos. He has had 3 DPaT's at 2m/4m/6m, > 3 HIB's at 2m/4m/12m, 2 IPV's at 2m /4m, and 3 PCV's 4m/9m/12m, > and Varicella at 12m. He never had the 4th DPaT, or a flu > shot, they were out god bless, and I never brought him back! > I would appreciate any help in begining testing. TIA! > Hello , I am not Diane, but here are a couple of links regarding testing for mercury and metals: http://home.earthlink.net/~moriam/HOW_TO_hair_test.html http://home.earthlink.net/~moriam/ANDY_INDEX.html in this file, look for the headings about " determining mercury toxicity " . There are three sections about this. good wishes, Moria Quote Link to comment Share on other sites More sharing options...
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