Guest guest Posted February 10, 2011 Report Share Posted February 10, 2011 Do you mind me asking what testing you have had done. We have an appt with Dr Goyal soon. Had an appt last week with Dr Monro with our NT daughter. I was very impressed with her.BW Alison Hello, I'm a new member and have read so many interesting posts which already answer some of my questions. I wish I'd found this group months ago! Just starting biomedical with 2 3/4 year old regressive. We've been to Breakspear and had some testing done and seen some results though not spoken to Dr Goyal about results yet. Following much googling, I think they indicate high copper:zinc levels (blood metallothionein studies). Does anyone have any experience of this? Also mentions of aluminium and antinomy. And mitochondrial inhibition. Again, any experience or knowledge would be much appreciated. Dr Goyal also put him on various supplements after the first consultation, and mentioned strep but we've not had this results back. Do they treat with antibiotics? How effective is this (considering he had far too many pre-regression)? By the way, been supplementing Morepa since nov and in late dec experienced new and improved concentration span and interest in toys, particularly building blocks. He's on 2 junior capsules a day (that's 400 odd mg of epa), but I'm tempted to up this, partly because I'm squeezing from the capsule). Also, generally, I've seen lots of mention of Breakspear and Dr Goyal. Do people have generally positive experiences? Thank you in advance for any replies. nah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2011 Report Share Posted February 10, 2011 Hi Sussanah, Low zinc (with relatively high copper) is quite common. After supplementing zinc for a long while copper is often needed (we found this). We all have had issues with low zinc in our family and have done well on supplementation. Our son is recovered now, it's almost 3 years since we decided he was recovered and around 2.5yrs since his diagnosis was formally removed. He doesn't need much at all in the way of supplements now - but he used to really need zinc. When we began to realise this we would watch what would happen after a dose and we'd see an improvement very quickly. High toxic metals and other nasties is common. There's a problem with sulphation (ie poor detox) in folk with ASD. Rosemary Waring has published on this. Best wishes, Sandy > > > > > > > Hello, > > > > I'm a new member and have read so many interesting posts which already > > answer some of my questions. I wish I'd found this group months ago! > > > > Just starting biomedical with 2 3/4 year old regressive. We've been to > > Breakspear and had some testing done and seen some results though not spoken > > to Dr Goyal about results yet. > > > > Following much googling, I think they indicate high copper:zinc levels > > (blood metallothionein studies). Does anyone have any experience of this? > > > > Also mentions of aluminium and antinomy. > > > > And mitochondrial inhibition. > > > > Again, any experience or knowledge would be much appreciated. > > > > Dr Goyal also put him on various supplements after the first consultation, > > and mentioned strep but we've not had this results back. Do they treat with > > antibiotics? How effective is this (considering he had far too many > > pre-regression)? > > > > By the way, been supplementing Morepa since nov and in late dec experienced > > new and improved concentration span and interest in toys, particularly > > building blocks. He's on 2 junior capsules a day (that's 400 odd mg of epa), > > but I'm tempted to up this, partly because I'm squeezing from the capsule). > > > > Also, generally, I've seen lots of mention of Breakspear and Dr Goyal. Do > > people have generally positive experiences? > > > > Thank you in advance for any replies. > > > > nah > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2011 Report Share Posted February 12, 2011 Hi Sandy, Thanks for all of this. It's great to hear your son has done so well and really encouraging that supplementation was so effective. Also interesting that you had to rebalance the copper. How did you know when this was necessary? I don't know for sure, but I think we may also have low zinc in the family. The results suggested low dna-associated zinc levels, and people in my family (myself included) have white spots on the nails - I think this is a symptom. Thanks also for the reference to Rosemary Waring - I'll have a read. Best wishes, nah > > > > > > > > > > > Hello, > > > > > > I'm a new member and have read so many interesting posts which already > > > answer some of my questions. I wish I'd found this group months ago! > > > > > > Just starting biomedical with 2 3/4 year old regressive. We've been to > > > Breakspear and had some testing done and seen some results though not spoken > > > to Dr Goyal about results yet. > > > > > > Following much googling, I think they indicate high copper:zinc levels > > > (blood metallothionein studies). Does anyone have any experience of this? > > > > > > Also mentions of aluminium and antinomy. > > > > > > And mitochondrial inhibition. > > > > > > Again, any experience or knowledge would be much appreciated. > > > > > > Dr Goyal also put him on various supplements after the first consultation, > > > and mentioned strep but we've not had this results back. Do they treat with > > > antibiotics? How effective is this (considering he had far too many > > > pre-regression)? > > > > > > By the way, been supplementing Morepa since nov and in late dec experienced > > > new and improved concentration span and interest in toys, particularly > > > building blocks. He's on 2 junior capsules a day (that's 400 odd mg of epa), > > > but I'm tempted to up this, partly because I'm squeezing from the capsule). > > > > > > Also, generally, I've seen lots of mention of Breakspear and Dr Goyal. Do > > > people have generally positive experiences? > > > > > > Thank you in advance for any replies. > > > > > > nah > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2011 Report Share Posted February 12, 2011 Hi Alison, The tests he recommended us based on history and physical examination were: TRIAD PANDAS Autism profile Gastro-intestinal function. These were blood, urine and stool samples. I'm not sure what exactly they are looking for within each of these tests. I have only seen some of the initial results, which I've mentioned below, but I know he was interested in strep too (I think that's in the PANDAS). I presume he doesn't necessarily recommend the same tests to every one though. Good luck with it. I'm very early on in the process, but so far very glad I've chosen this route. Best wishes, nah > > > > > > > Hello, > > > > I'm a new member and have read so many interesting posts which already > > answer some of my questions. I wish I'd found this group months ago! > > > > Just starting biomedical with 2 3/4 year old regressive. We've been to > > Breakspear and had some testing done and seen some results though not spoken > > to Dr Goyal about results yet. > > > > Following much googling, I think they indicate high copper:zinc levels > > (blood metallothionein studies). Does anyone have any experience of this? > > > > Also mentions of aluminium and antinomy. > > > > And mitochondrial inhibition. > > > > Again, any experience or knowledge would be much appreciated. > > > > Dr Goyal also put him on various supplements after the first consultation, > > and mentioned strep but we've not had this results back. Do they treat with > > antibiotics? How effective is this (considering he had far too many > > pre-regression)? > > > > By the way, been supplementing Morepa since nov and in late dec experienced > > new and improved concentration span and interest in toys, particularly > > building blocks. He's on 2 junior capsules a day (that's 400 odd mg of epa), > > but I'm tempted to up this, partly because I'm squeezing from the capsule). > > > > Also, generally, I've seen lots of mention of Breakspear and Dr Goyal. Do > > people have generally positive experiences? > > > > Thank you in advance for any replies. > > > > nah > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2011 Report Share Posted February 13, 2011 Hi nah, We read on this group that if supplementing zinc then you may need to balance with copper. You've probably read that low zinc is very common in ASD (seems to often occur with high copper - so a lot of folk don't want to supplement copper, at least not at first). We did some nutritional testing that recommended copper. I think it was an organic acid test. Best wishes, Sandy > > > > > > > > > > > > > > > Hello, > > > > > > > > I'm a new member and have read so many interesting posts which already > > > > answer some of my questions. I wish I'd found this group months ago! > > > > > > > > Just starting biomedical with 2 3/4 year old regressive. We've been to > > > > Breakspear and had some testing done and seen some results though not spoken > > > > to Dr Goyal about results yet. > > > > > > > > Following much googling, I think they indicate high copper:zinc levels > > > > (blood metallothionein studies). Does anyone have any experience of this? > > > > > > > > Also mentions of aluminium and antinomy. > > > > > > > > And mitochondrial inhibition. > > > > > > > > Again, any experience or knowledge would be much appreciated. > > > > > > > > Dr Goyal also put him on various supplements after the first consultation, > > > > and mentioned strep but we've not had this results back. Do they treat with > > > > antibiotics? How effective is this (considering he had far too many > > > > pre-regression)? > > > > > > > > By the way, been supplementing Morepa since nov and in late dec experienced > > > > new and improved concentration span and interest in toys, particularly > > > > building blocks. He's on 2 junior capsules a day (that's 400 odd mg of epa), > > > > but I'm tempted to up this, partly because I'm squeezing from the capsule). > > > > > > > > Also, generally, I've seen lots of mention of Breakspear and Dr Goyal. Do > > > > people have generally positive experiences? > > > > > > > > Thank you in advance for any replies. > > > > > > > > nah > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2011 Report Share Posted February 13, 2011 Hi nah, We read on this group that if supplementing zinc then you may need to balance with copper. You've probably read that low zinc is very common in ASD (seems to often occur with high copper - so a lot of folk don't want to supplement copper, at least not at first). We did some nutritional testing that recommended copper. I think it was an organic acid test. Best wishes, Sandy > > > > > > > > > > > > > > > Hello, > > > > > > > > I'm a new member and have read so many interesting posts which already > > > > answer some of my questions. I wish I'd found this group months ago! > > > > > > > > Just starting biomedical with 2 3/4 year old regressive. We've been to > > > > Breakspear and had some testing done and seen some results though not spoken > > > > to Dr Goyal about results yet. > > > > > > > > Following much googling, I think they indicate high copper:zinc levels > > > > (blood metallothionein studies). Does anyone have any experience of this? > > > > > > > > Also mentions of aluminium and antinomy. > > > > > > > > And mitochondrial inhibition. > > > > > > > > Again, any experience or knowledge would be much appreciated. > > > > > > > > Dr Goyal also put him on various supplements after the first consultation, > > > > and mentioned strep but we've not had this results back. Do they treat with > > > > antibiotics? How effective is this (considering he had far too many > > > > pre-regression)? > > > > > > > > By the way, been supplementing Morepa since nov and in late dec experienced > > > > new and improved concentration span and interest in toys, particularly > > > > building blocks. He's on 2 junior capsules a day (that's 400 odd mg of epa), > > > > but I'm tempted to up this, partly because I'm squeezing from the capsule). > > > > > > > > Also, generally, I've seen lots of mention of Breakspear and Dr Goyal. Do > > > > people have generally positive experiences? > > > > > > > > Thank you in advance for any replies. > > > > > > > > nah > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2011 Report Share Posted February 13, 2011 Does anyone know why someone could take tons of zinc supplements for years but still show up as very low in zinc on a hair analysis? Margaret > > > > > > > > > > > > > > > > > > > Hello, > > > > > > > > > > I'm a new member and have read so many interesting posts which already > > > > > answer some of my questions. I wish I'd found this group months ago! > > > > > > > > > > Just starting biomedical with 2 3/4 year old regressive. We've been to > > > > > Breakspear and had some testing done and seen some results though not spoken > > > > > to Dr Goyal about results yet. > > > > > > > > > > Following much googling, I think they indicate high copper:zinc levels > > > > > (blood metallothionein studies). Does anyone have any experience of this? > > > > > > > > > > Also mentions of aluminium and antinomy. > > > > > > > > > > And mitochondrial inhibition. > > > > > > > > > > Again, any experience or knowledge would be much appreciated. > > > > > > > > > > Dr Goyal also put him on various supplements after the first consultation, > > > > > and mentioned strep but we've not had this results back. Do they treat with > > > > > antibiotics? How effective is this (considering he had far too many > > > > > pre-regression)? > > > > > > > > > > By the way, been supplementing Morepa since nov and in late dec experienced > > > > > new and improved concentration span and interest in toys, particularly > > > > > building blocks. He's on 2 junior capsules a day (that's 400 odd mg of epa), > > > > > but I'm tempted to up this, partly because I'm squeezing from the capsule). > > > > > > > > > > Also, generally, I've seen lots of mention of Breakspear and Dr Goyal. Do > > > > > people have generally positive experiences? > > > > > > > > > > Thank you in advance for any replies. > > > > > > > > > > nah > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2011 Report Share Posted February 13, 2011 Hi Margaret, With KPU the body loses zinc. http://www.liliasahmeira.com/austism/kpu-and-autism.html http://planetthrive.com/2010/04/hpukpu-protocol-for-lyme-and-autism/ http://www.naturalhealthinnovations.net/kpu-testing.html Best wishes, Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2011 Report Share Posted February 13, 2011 Hi Margaret, With KPU the body loses zinc. http://www.liliasahmeira.com/austism/kpu-and-autism.html http://planetthrive.com/2010/04/hpukpu-protocol-for-lyme-and-autism/ http://www.naturalhealthinnovations.net/kpu-testing.html Best wishes, Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2011 Report Share Posted February 14, 2011 hi sandy, hope u are well. i was wondering for the scd what milk would be suitable to use? thanks tahira To: Autism-Biomedical-Europe Sent: Mon, 14 February, 2011 7:26:59Subject: Re: zinc-copper/ mitochondrial inhibition/ strep/ epa dosage. Hi Margaret,With KPU the body loses zinc.http://www.liliasahmeira.com/austism/kpu-and-autism.htmlhttp://planetthrive.com/2010/04/hpukpu-protocol-for-lyme-and-autism/http://www.naturalhealthinnovations.net/kpu-testing.htmlBest wishes,Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2011 Report Share Posted February 14, 2011 hi sandy, hope u are well. i was wondering for the scd what milk would be suitable to use? thanks tahira To: Autism-Biomedical-Europe Sent: Mon, 14 February, 2011 7:26:59Subject: Re: zinc-copper/ mitochondrial inhibition/ strep/ epa dosage. Hi Margaret,With KPU the body loses zinc.http://www.liliasahmeira.com/austism/kpu-and-autism.htmlhttp://planetthrive.com/2010/04/hpukpu-protocol-for-lyme-and-autism/http://www.naturalhealthinnovations.net/kpu-testing.htmlBest wishes,Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2011 Report Share Posted February 14, 2011 Hi Tahira, From memory I think you can use cow or goat milk for the SCD yoghurt. We find we are best without cow milk in any form. (I think most have goat milk yoghurt). We found this site useful http://www.pecanbread.com/new/home1.html On SCD you can't have the milk unless it is fermented to make the SCD yoghurt but you can have hard cheeses (not soft) and butter (which is nice :-)) Best wishes, Sandy > > hi sandy, hope u are well. i was wondering for the scd what milk  > would be suitable to use? thanks tahira > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2011 Report Share Posted February 14, 2011 Hi Tahira, From memory I think you can use cow or goat milk for the SCD yoghurt. We find we are best without cow milk in any form. (I think most have goat milk yoghurt). We found this site useful http://www.pecanbread.com/new/home1.html On SCD you can't have the milk unless it is fermented to make the SCD yoghurt but you can have hard cheeses (not soft) and butter (which is nice :-)) Best wishes, Sandy > > hi sandy, hope u are well. i was wondering for the scd what milk  > would be suitable to use? thanks tahira > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2011 Report Share Posted February 14, 2011 So the goat yogurt would not be good for the gluten free casein free diet do you think the almond milk would be ok.. From: Sandy and Tim ; To: <Autism-Biomedical-Europe >; Subject: Re: zinc-copper/ mitochondrial inhibition/ strep/ epa dosage. Sent: Mon, Feb 14, 2011 1:30:07 PM Hi Tahira, From memory I think you can use cow or goat milk for the SCD yoghurt. We find we are best without cow milk in any form. (I think most have goat milk yoghurt). We found this site useful http://www.pecanbread.com/new/home1.html On SCD you can't have the milk unless it is fermented to make the SCD yoghurt but you can have hard cheeses (not soft) and butter (which is nice :-)) Best wishes, Sandy > > hi sandy, hope u are well. i was wondering for the scd what milk  > would be suitable to use? thanks tahira > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2011 Report Share Posted February 14, 2011 So the goat yogurt would not be good for the gluten free casein free diet do you think the almond milk would be ok.. From: Sandy and Tim ; To: <Autism-Biomedical-Europe >; Subject: Re: zinc-copper/ mitochondrial inhibition/ strep/ epa dosage. Sent: Mon, Feb 14, 2011 1:30:07 PM Hi Tahira, From memory I think you can use cow or goat milk for the SCD yoghurt. We find we are best without cow milk in any form. (I think most have goat milk yoghurt). We found this site useful http://www.pecanbread.com/new/home1.html On SCD you can't have the milk unless it is fermented to make the SCD yoghurt but you can have hard cheeses (not soft) and butter (which is nice :-)) Best wishes, Sandy > > hi sandy, hope u are well. i was wondering for the scd what milk  > would be suitable to use? thanks tahira > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2011 Report Share Posted February 14, 2011 Hi Tahira, Goat milk yoghurt is what we have. Our family has problems with cow and goat MILK e.g., skin rashes, bad stomach, sinus problems, but we are great with goat milk when it is fermented to make yoghurt. The long fermentation of SCD yoghurt must break done the lactose/casein enough for us. we used this link to learn about making yoghurt http://www.pecanbread.com/new/yogurt1.html Best wishes, Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2011 Report Share Posted February 14, 2011 Hi Tahira, Goat milk yoghurt is what we have. Our family has problems with cow and goat MILK e.g., skin rashes, bad stomach, sinus problems, but we are great with goat milk when it is fermented to make yoghurt. The long fermentation of SCD yoghurt must break done the lactose/casein enough for us. we used this link to learn about making yoghurt http://www.pecanbread.com/new/yogurt1.html Best wishes, Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2011 Report Share Posted February 15, 2011 hi sandy thanks for thatw ebsite it was useful. do u know of any concise book on the scd. also where is best place to get the dehydrators? thanks tahira To: Autism-Biomedical-Europe Sent: Mon, 14 February, 2011 19:19:34Subject: Re: zinc-copper/ mitochondrial inhibition/ strep/ epa dosage. Hi Tahira,Goat milk yoghurt is what we have. Our family has problems with cow and goat MILK e.g., skin rashes, bad stomach, sinus problems, but we are great with goat milk when it is fermented to make yoghurt. The long fermentation of SCD yoghurt must break done the lactose/casein enough for us.we used this link to learn about making yoghurthttp://www.pecanbread.com/new/yogurt1.htmlBest wishes,Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 Hi Sandy, In fact, I spoke to Dr Goyal who said that even though zinc was high and copper was low, that low zinc inhibited copper absorption, so not to avoid copper. He didn't recommended copper supplements although his normal multivits contain some. I'll mention the organic acid test next time we have a consultation - you mentioned the low copper occured after some time, so perhaps this is something for further down the line?. (Was it a blood test? I dread doing more bloods!). Interestingly, I got the lab report back on the blood test, which states " When present, toxic metals can displace zinc or copper " , and he has antimony and aluminium in his metallothionein, which may also be messing up the ratio. We've been recommended trans-dermal dmps rather than full on chelation. Thanks again for the info., nah > > > > > > > > > > > > > > > > > > > Hello, > > > > > > > > > > I'm a new member and have read so many interesting posts which already > > > > > answer some of my questions. I wish I'd found this group months ago! > > > > > > > > > > Just starting biomedical with 2 3/4 year old regressive. We've been to > > > > > Breakspear and had some testing done and seen some results though not spoken > > > > > to Dr Goyal about results yet. > > > > > > > > > > Following much googling, I think they indicate high copper:zinc levels > > > > > (blood metallothionein studies). Does anyone have any experience of this? > > > > > > > > > > Also mentions of aluminium and antinomy. > > > > > > > > > > And mitochondrial inhibition. > > > > > > > > > > Again, any experience or knowledge would be much appreciated. > > > > > > > > > > Dr Goyal also put him on various supplements after the first consultation, > > > > > and mentioned strep but we've not had this results back. Do they treat with > > > > > antibiotics? How effective is this (considering he had far too many > > > > > pre-regression)? > > > > > > > > > > By the way, been supplementing Morepa since nov and in late dec experienced > > > > > new and improved concentration span and interest in toys, particularly > > > > > building blocks. He's on 2 junior capsules a day (that's 400 odd mg of epa), > > > > > but I'm tempted to up this, partly because I'm squeezing from the capsule). > > > > > > > > > > Also, generally, I've seen lots of mention of Breakspear and Dr Goyal. Do > > > > > people have generally positive experiences? > > > > > > > > > > Thank you in advance for any replies. > > > > > > > > > > nah > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 Dear Sussanah, It wasn't a blood test so must have been a urine test that picked up low copper. Blood tests were awful for us also and not terribly useful ...though I suppose they could have been - but given the cost' logistics and stress it wasn't so great. Best wishes, Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2011 Report Share Posted February 26, 2011 hi sandy, please advise where i can get the goat yogurt live starter for the yogurt. do you feel u need a dehydrator can make yogurt,or can u use a thermos flask for this ? hope u can advise tahiara To: Autism-Biomedical-Europe Sent: Mon, 14 February, 2011 19:19:34Subject: Re: zinc-copper/ mitochondrial inhibition/ strep/ epa dosage. Hi Tahira,Goat milk yoghurt is what we have. Our family has problems with cow and goat MILK e.g., skin rashes, bad stomach, sinus problems, but we are great with goat milk when it is fermented to make yoghurt. The long fermentation of SCD yoghurt must break done the lactose/casein enough for us.we used this link to learn about making yoghurthttp://www.pecanbread.com/new/yogurt1.htmlBest wishes,Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2011 Report Share Posted March 2, 2011 Hi Sandy, (Sorry - exceedingly slow reply! Been away/offline). I take your point about repeating blood tests. It was very stressful (and costly) and I'd hate to repeat if absolutely necessary, although we got some useful stuff. But I'm hoping that symptoms will show if deficiencies/toxicities have been addressed (e.g. a couple of weeks after starting zinc, he is a lot less snotty, which I hope means his immune system is healing a little; and magnesium seems to have addressed energy to some extent). And urine was much easier, and will be even easier if ever out of nappies (long early mornings extracting urine from pad with pipette!). Thanks again, nah > > Dear Sussanah, > > It wasn't a blood test so must have been a urine test that picked up low copper. > Blood tests were awful for us also and not terribly useful ...though I suppose they could have been - but given the cost' logistics and stress it wasn't so great. > Best wishes, > Sandy > Quote Link to comment Share on other sites More sharing options...
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