Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 > > Hello I am new to the group and was curious about the > BH4. What is it? What does it do? Also, where can I > get some more info on the Bethanacol? My son has > never tolerated the fish oil at all, makes him crazy. > Would the Bethanacol help with that? > > Thanks, > Elise mom to 6 ASD, Jonah 3 DD > > __________________________________________________ Hello do not give him fish oil, that might contain mercury, if you want to benefit from omega 3 and 6 give him flex seed iol instead. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 > > Hello I am new to the group and was curious about the > BH4. What is it? What does it do? Also, where can I > get some more info on the Bethanacol? My son has > never tolerated the fish oil at all, makes him crazy. > Would the Bethanacol help with that? > > Thanks, > Elise mom to 6 ASD, Jonah 3 DD > > __________________________________________________ Hello do not give him fish oil, that might contain mercury, if you want to benefit from omega 3 and 6 give him flex seed iol instead. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Elsie: Simply, BH4 is an enzyme involved in many complex processes in the body, it affects serotonin and dopamine conversion and it is involved in PKU and lots of other functions and is implicated in PKU-variant type disorders as well, severe forms are generally caught at birth and are quite devastating, but milder forms seem to be mid-diagnosed and can present later on. BH4 be obtained by prescription in Switzerland, Japan and maybe some other places, but not in the U.S. I think there are some supplements with real low amounts of concentration in it available here. The gold standard for really knowing whether there is a true BH4 deficiency appears to be by testing CSF (spinal tap), but some parents are finding it successful in low amounts on the Yasko protocol without obviously testing this invasively. To learn more about BH4 disorders, to www.bh4.org Re: BH4 > > Hello I am new to the group and was curious about the > BH4. What is it? What does it do? Also, where can I > get some more info on the Bethanacol? My son has > never tolerated the fish oil at all, makes him crazy. > Would the Bethanacol help with that? > > Thanks, > Elise mom to 6 ASD, Jonah 3 DD > > __________________________________________________ Hello do not give him fish oil, that might contain mercury, if you want to benefit from omega 3 and 6 give him flex seed iol instead. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Elsie: Simply, BH4 is an enzyme involved in many complex processes in the body, it affects serotonin and dopamine conversion and it is involved in PKU and lots of other functions and is implicated in PKU-variant type disorders as well, severe forms are generally caught at birth and are quite devastating, but milder forms seem to be mid-diagnosed and can present later on. BH4 be obtained by prescription in Switzerland, Japan and maybe some other places, but not in the U.S. I think there are some supplements with real low amounts of concentration in it available here. The gold standard for really knowing whether there is a true BH4 deficiency appears to be by testing CSF (spinal tap), but some parents are finding it successful in low amounts on the Yasko protocol without obviously testing this invasively. To learn more about BH4 disorders, to www.bh4.org Re: BH4 > > Hello I am new to the group and was curious about the > BH4. What is it? What does it do? Also, where can I > get some more info on the Bethanacol? My son has > never tolerated the fish oil at all, makes him crazy. > Would the Bethanacol help with that? > > Thanks, > Elise mom to 6 ASD, Jonah 3 DD > > __________________________________________________ Hello do not give him fish oil, that might contain mercury, if you want to benefit from omega 3 and 6 give him flex seed iol instead. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Well written . My son started taking BH4 few weeks ago and we saw some really nice improvement in his language. According to Dr. Yasko, once the BH4 requirment has been met, an on going low dose will be sufficient. AT this point we are giving our 4 year old son, 5 mg capsule. We started Valtrex almost two months back and that brought good changes in our son as well, more focused, less behaviors, more "with us" !, however his yeast gets out of control so we rotate between diflucan and nystatin. Wishes, Ahmed " K. Fischer" <elfischer@...> wrote: Elsie: Simply, BH4 is an enzyme involved in many complex processes in the body, it affects serotonin and dopamine conversion and it is involved in PKU and lots of other functions and is implicated in PKU-variant type disorders as well, severe forms are generally caught at birth and are quite devastating, but milder forms seem to be mid-diagnosed and can present later on. BH4 be obtained by prescription in Switzerland, Japan and maybe some other places, but not in the U.S. I think there are some supplements with real low amounts of concentration in it available here. The gold standard for really knowing whether there is a true BH4 deficiency appears to be by testing CSF (spinal tap), but some parents are finding it successful in low amounts on the Yasko protocol without obviously testing this invasively. To learn more about BH4 disorders, to www.bh4.org -----Original Message-----From: mb12 valtrex [mailto:mb12 valtrex ] On Behalf Of arvinserojSent: Tuesday, July 11, 2006 1:50 PMmb12 valtrex Subject: Re: BH4 >> Hello I am new to the group and was curious about the> BH4. What is it? What does it do? Also, where can I> get some more info on the Bethanacol? My son has> never tolerated the fish oil at all, makes him crazy. > Would the Bethanacol help with that?> > Thanks,> Elise mom to 6 ASD, Jonah 3 DD> > __________________________________________________Hellodo not give him fish oil, that might contain mercury, if you want to benefit from omega 3 and 6 give him flex seed iol instead.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Well written . My son started taking BH4 few weeks ago and we saw some really nice improvement in his language. According to Dr. Yasko, once the BH4 requirment has been met, an on going low dose will be sufficient. AT this point we are giving our 4 year old son, 5 mg capsule. We started Valtrex almost two months back and that brought good changes in our son as well, more focused, less behaviors, more "with us" !, however his yeast gets out of control so we rotate between diflucan and nystatin. Wishes, Ahmed " K. Fischer" <elfischer@...> wrote: Elsie: Simply, BH4 is an enzyme involved in many complex processes in the body, it affects serotonin and dopamine conversion and it is involved in PKU and lots of other functions and is implicated in PKU-variant type disorders as well, severe forms are generally caught at birth and are quite devastating, but milder forms seem to be mid-diagnosed and can present later on. BH4 be obtained by prescription in Switzerland, Japan and maybe some other places, but not in the U.S. I think there are some supplements with real low amounts of concentration in it available here. The gold standard for really knowing whether there is a true BH4 deficiency appears to be by testing CSF (spinal tap), but some parents are finding it successful in low amounts on the Yasko protocol without obviously testing this invasively. To learn more about BH4 disorders, to www.bh4.org -----Original Message-----From: mb12 valtrex [mailto:mb12 valtrex ] On Behalf Of arvinserojSent: Tuesday, July 11, 2006 1:50 PMmb12 valtrex Subject: Re: BH4 >> Hello I am new to the group and was curious about the> BH4. What is it? What does it do? Also, where can I> get some more info on the Bethanacol? My son has> never tolerated the fish oil at all, makes him crazy. > Would the Bethanacol help with that?> > Thanks,> Elise mom to 6 ASD, Jonah 3 DD> > __________________________________________________Hellodo not give him fish oil, that might contain mercury, if you want to benefit from omega 3 and 6 give him flex seed iol instead.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2006 Report Share Posted July 24, 2006 In a message dated 22/07/2006 23:27:00 GMT Daylight Time, callyflower@... writes: Hi,My dd has been using it for 3 weeks. I've noticed nothing negative or outrageously positive either. My dd is very verbal so my reasons for using it are mainly for assisting with the detox of virus, aluminum, etc. If we get some improvement with expressive language, that will be a bonus. We have also just added in methylation supports, etc (Yasko) so have a lot going on which makes evaluation of any one thing difficult. Unfortunately, that's a common state of affairs with my dd. LOLHope this helps a little. Hiya Cally How you doin? can you give us a little update as to how Bellas doing with the Yasko stuff. How long have you been doing it? Any improvements? Are you going all out Yasko and stopping all your other supps or just adding in extra things? Dr usman reckons we should supplement according to our Nutrigenomics but not go all out Yasko. We are now about to test serotonin and dopamine levels, it never stops all this blinking testing does it. Anyway would be great to hear about it. Luv Caroline xx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2006 Report Share Posted October 3, 2006 Hi we have just had pterine results and they are not good. Neopterine and biopterin nearly the same, should be a 1/2 ratio. We have started spironalacton to reduce neopterine and dr said would be a good idea to give BH4 if we can get hold of it - they can't in the States. Does anyone here use it and how do you get it - it can't be sent to a private address. Thanks Peta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2006 Report Share Posted October 4, 2006 Thanks Mandi My dr in Florida said he can't get it ( would like to be able to use it on his son). But if we reduce neopterine then maybe not so bad if biopterine stays the same - will have to ask next consult. Oh why did we have the MMR! There is so much broken in our kids bodies. Peta- -- In Autism Treatment , Mum231ASD@... wrote: > > > In a message dated 03/10/2006 19:25:27 GMT Daylight Time, > peta3366@... writes: > > Hi we have just had pterine results and they are not good. Neopterine > and biopterin nearly the same, should be a 1/2 ratio. We have started > spironalacton to reduce neopterine and dr said would be a good idea to > give BH4 if we can get hold of it - they can't in the States. Does > anyone here use it and how do you get it - it can't be sent to a > private address. > > > > >>>People are getting it in the US, its VERY expensive. There is a website > somewhere that you sign up for a longdistance consult and then they will sell > to you. I try to find out where it is > > Mandi x > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2006 Report Share Posted October 15, 2006 Hey Gail, I don't know if someone already told you this, but it usually only takes a little while after getting your resulss to get the GAR. They have been busy lately with the conference last weekend, but they have gotten caught up with the GAR situation -- I know one mother got hedr results and GAR at the same time last week. If it's been a while, do email or call the office to ask. My results gots lost in the mail on their way here to The Hague, so they sent me out a new one express mail and didn't charge me a thing. I also don't know if you live in Europe or are interested, but we have a support group for those in Europe doing the Yasko program -- YaskoEurope/ Hugs, Theresa > > > > > > In a message dated 22/07/2006 23:27:00 GMT Daylight Time, > > callyflower@ writes: > > > > Hi, > > > > My dd has been using it for 3 weeks. I've noticed nothing > negative > > or outrageously positive either. My dd is very verbal so my > reasons > > for using it are mainly for assisting with the detox of virus, > > aluminum, etc. If we get some improvement with expressive > language, > > that will be a bonus. We have also just added in methylation > > supports, etc (Yasko) so have a lot going on which makes > evaluation > > of any one thing difficult. Unfortunately, that's a common state > of > > affairs with my dd. LOL > > > > Hope this helps a little. > > > > > > > > Hiya Cally > > How you doin? can you give us a little update as to how Bellas > doing with > > the Yasko stuff. How long have you been doing it? Any > improvements? Are you > > going all out Yasko and stopping all your other supps or just > adding in extra > > things? Dr usman reckons we should supplement according to our > Nutrigenomics but > > not go all out Yasko. We are now about to test serotonin and > dopamine > > levels, it never stops all this blinking testing does it. > > Anyway would be great to hear about it. > > Luv Caroline > > xx > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2006 Report Share Posted October 15, 2006 Peta, Can you clarify for me what you mean by a 1/2 ratio? Which should be higher? I don't understand the link with the MMR and measles and the elevated neopterin. Which doc do you see in Florida? Did your doctor tell you anything more about why they suggest using the spironalocatone? I understand that it is an aldosterone receptor antagonist. It's used for patients with hyperaldosteronism, low potassium levels and fluid retention (also for high blood pressure). It's supposed to make the body ele3minate water and sodium and thus to spare potassium. I know that Dr. Yasko has a different, natural protocol for this. She believes that elevated excretion of potassium relative to sodium is a strong indicator for the ACE deletion in the absence of appropriate supplementation. The ACE deletion results in elevated aldosterone levels, and if almdosterone becomes elevated, you see high potassium and low sodium on a urinary essentail elements test. Chronic stress can also cause aldosterone levels to rise, so you could have sodium retention and potassium wasting in that case, too. Lots of black licorice or grapefruit intake can also inhibit the enzyme that breaks down aldosterone, and then cause the low urinary sodium and high urinary potassium. I do have the name of a pharmacist in Switzerland who can send BH4. Hugs, Theresa > > Hi we have just had pterine results and they are not good. Neopterine > and biopterin nearly the same, should be a 1/2 ratio. We have started > spironalacton to reduce neopterine and dr said would be a good idea to > give BH4 if we can get hold of it - they can't in the States. Does > anyone here use it and how do you get it - it can't be sent to a > private address. > Thanks > Peta > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2006 Report Share Posted October 15, 2006 Hi Theresa I haven't had much time to talk to dr about this yet - we have been having big problems with bacteria/fungus - but I am speaking to him on Tuesday and will find out a lot more. He said the biopterine should be twice the level of the neopertine ( Charlie's is 1-1). The neopterine is poison and the spironalacton is reducing the levels - I think this is fairly new but they are seeing good results. Are you using the BH4? Could you give me the name of the pharmacy please - do they need a prescription - do they accept a US dr? I will post again after our consult. Thanks Peta- -- In Autism Treatment , " tltbaku " <tltbaku@...> wrote: > > Peta, > > Can you clarify for me what you mean by a 1/2 ratio? Which should > be higher? I don't understand the link with the MMR and measles and > the elevated neopterin. Which doc do you see in Florida? Did your > doctor tell you anything more about why they suggest using the > spironalocatone? I understand that it is an aldosterone receptor > antagonist. It's used for patients with hyperaldosteronism, low > potassium levels and fluid retention (also for high blood pressure). > It's supposed to make the body ele3minate water and sodium and thus > to spare potassium. I know that Dr. Yasko has a different, natural > protocol for this. She believes that elevated excretion of > potassium relative to sodium is a strong indicator for the ACE > deletion in the absence of appropriate supplementation. The ACE > deletion results in elevated aldosterone levels, and if almdosterone > becomes elevated, you see high potassium and low sodium on a urinary > essentail elements test. Chronic stress can also cause aldosterone > levels to rise, so you could have sodium retention and potassium > wasting in that case, too. Lots of black licorice or grapefruit > intake can also inhibit the enzyme that breaks down aldosterone, and > then cause the low urinary sodium and high urinary potassium. > > I do have the name of a pharmacist in Switzerland who can send BH4. > > Hugs, > Theresa > > > > > > > Hi we have just had pterine results and they are not good. > Neopterine > > and biopterin nearly the same, should be a 1/2 ratio. We have > started > > spironalacton to reduce neopterine and dr said would be a good > idea to > > give BH4 if we can get hold of it - they can't in the States. Does > > anyone here use it and how do you get it - it can't be sent to a > > private address. > > Thanks > > Peta > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2006 Report Share Posted October 15, 2006 Spironolactone should be used with caution. I have patients who want sex changes that are put on this medication and one developed a tumor on his thyroid (a known side effect). Particularly if I had a boy, I would look really, really, really hard at this medication. It messes around with hormones, someone that should really be considered very carefully. This is not a benign medication. Re: BH4 Hi TheresaI haven't had much time to talk to dr about this yet - we have been having big problems with bacteria/fungus - but I am speaking to him on Tuesday and will find out a lot more. He said the biopterine should be twice the level of the neopertine ( Charlie's is 1-1). The neopterine is poison and the spironalacton is reducing the levels - I think this is fairly new but they are seeing good results.Are you using the BH4? Could you give me the name of the pharmacy please - do they need a prescription - do they accept a US dr?I will post again after our consult.ThanksPeta> >> > Hi we have just had pterine results and they are not good. > Neopterine > > and biopterin nearly the same, should be a 1/2 ratio. We have > started > > spironalacton to reduce neopterine and dr said would be a good > idea to > > give BH4 if we can get hold of it - they can't in the States. Does > > anyone here use it and how do you get it - it can't be sent to a > > private address.> > Thanks> > Peta> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2006 Report Share Posted October 16, 2006 Hi That sounds scary. I think one of the reasons that they are using it is because it reduces testosterone levels - but I'm not absolutely sure of my facts and will have to ask more questions. I dislike medication/pills of any kind but Charlie has made loads of progress since we have been with Bradstreet's clinic so sometimes I feel I have to trust them ( as well as loads of questioning). Anyway thanks. Peta -- In Autism Treatment , " Cochran " <Ladyshrink111@...> wrote: > > Spironolactone should be used with caution. I have patients who want sex changes that are put on this medication and one developed a tumor on his thyroid (a known side effect). Particularly if I had a boy, I would look really, really, really hard at this medication. It messes around with hormones, someone that should really be considered very carefully. This is not a benign medication. > > > > Re: BH4 > > > Hi Theresa > I haven't had much time to talk to dr about this yet - we have been > having big problems with bacteria/fungus - but I am speaking to him > on Tuesday and will find out a lot more. He said the biopterine > should be twice the level of the neopertine ( Charlie's is 1-1). The > neopterine is poison and the spironalacton is reducing the levels - > I think this is fairly new but they are seeing good results. > Are you using the BH4? Could you give me the name of the pharmacy > please - do they need a prescription - do they accept a US dr? > I will post again after our consult. > Thanks > Peta- > > -- In Autism Treatment , " tltbaku " > <tltbaku@> wrote: > > > > Peta, > > > > Can you clarify for me what you mean by a 1/2 ratio? Which should > > be higher? I don't understand the link with the MMR and measles > and > > the elevated neopterin. Which doc do you see in Florida? Did your > > doctor tell you anything more about why they suggest using the > > spironalocatone? I understand that it is an aldosterone receptor > > antagonist. It's used for patients with hyperaldosteronism, low > > potassium levels and fluid retention (also for high blood > pressure). > > It's supposed to make the body ele3minate water and sodium and > thus > > to spare potassium. I know that Dr. Yasko has a different, > natural > > protocol for this. She believes that elevated excretion of > > potassium relative to sodium is a strong indicator for the ACE > > deletion in the absence of appropriate supplementation. The ACE > > deletion results in elevated aldosterone levels, and if > almdosterone > > becomes elevated, you see high potassium and low sodium on a > urinary > > essentail elements test. Chronic stress can also cause aldosterone > > levels to rise, so you could have sodium retention and potassium > > wasting in that case, too. Lots of black licorice or grapefruit > > intake can also inhibit the enzyme that breaks down aldosterone, > and > > then cause the low urinary sodium and high urinary potassium. > > > > I do have the name of a pharmacist in Switzerland who can send BH4. > > > > Hugs, > > Theresa > > > > > > > > > > > > Hi we have just had pterine results and they are not good. > > Neopterine > > > and biopterin nearly the same, should be a 1/2 ratio. We have > > started > > > spironalacton to reduce neopterine and dr said would be a good > > idea to > > > give BH4 if we can get hold of it - they can't in the States. > Does > > > anyone here use it and how do you get it - it can't be sent to a > > > private address. > > > Thanks > > > Peta > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2006 Report Share Posted October 16, 2006 Hi Peta, I did read the paper that Bradstreet wrote, wasn't supposed to but it was posted by accident? Mainly the spiro is used to reduce inflammation and maybe reducing testosterone is a side benefit as some believe the mercury binds to the testosterone and reducing it would help the excretion, this is not a proven fact, but a theory? Someone else posted on another board that BH4 could do the same thing (reduce inflammation) and the spiro was being used as the BH4 was harder to get. I don't know if this is true, Peta, but I am sure you will check it out. If true, BH4 has none of the side effects of spiro or even Actos, which I would consider before the spiro. I took spiro at one time, given short term as a direutic, which it is and I can tell you that it was hard on the kidneys, I had some kidney discomfort. Also as a direutic it would wash all water soluble nutrients out of the body quickly (I got huge muscle cramps probably due to the excretion of cal/mag/potassium. As with anything else, it is up to the individual parent to decide what are acceptable risks vs rewards. Good luck, Re: BH4> > > Hi Theresa> I haven't had much time to talk to dr about this yet - we have been > having big problems with bacteria/fungus - but I am speaking to him > on Tuesday and will find out a lot more. He said the biopterine > should be twice the level of the neopertine ( Charlie's is 1-1). The > neopterine is poison and the spironalacton is reducing the levels - > I think this is fairly new but they are seeing good results.> Are you using the BH4? Could you give me the name of the pharmacy > please - do they need a prescription - do they accept a US dr?> I will post again after our consult.> Thanks> Peta-> > -- In Autism Treatment , "tltbaku" > <tltbaku@> wrote:> >> > Peta,> > > > Can you clarify for me what you mean by a 1/2 ratio? Which should > > be higher? I don't understand the link with the MMR and measles > and > > the elevated neopterin. Which doc do you see in Florida? Did your > > doctor tell you anything more about why they suggest using the > > spironalocatone? I understand that it is an aldosterone receptor > > antagonist. It's used for patients with hyperaldosteronism, low > > potassium levels and fluid retention (also for high blood > pressure). > > It's supposed to make the body ele3minate water and sodium and > thus > > to spare potassium. I know that Dr. Yasko has a different, > natural > > protocol for this. She believes that elevated excretion of > > potassium relative to sodium is a strong indicator for the ACE > > deletion in the absence of appropriate supplementation. The ACE > > deletion results in elevated aldosterone levels, and if > almdosterone > > becomes elevated, you see high potassium and low sodium on a > urinary > > essentail elements test. Chronic stress can also cause aldosterone > > levels to rise, so you could have sodium retention and potassium > > wasting in that case, too. Lots of black licorice or grapefruit > > intake can also inhibit the enzyme that breaks down aldosterone, > and > > then cause the low urinary sodium and high urinary potassium.> > > > I do have the name of a pharmacist in Switzerland who can send BH4.> > > > Hugs,> > Theresa> > > > > > > > >> > > Hi we have just had pterine results and they are not good. > > Neopterine > > > and biopterin nearly the same, should be a 1/2 ratio. We have > > started > > > spironalacton to reduce neopterine and dr said would be a good > > idea to > > > give BH4 if we can get hold of it - they can't in the States. > Does > > > anyone here use it and how do you get it - it can't be sent to a > > > private address.> > > Thanks> > > Peta> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2006 Report Share Posted October 16, 2006 Peta, I just sent you an email with the contact info for the pharmacies. That is interesting -- So normal biopterin:neopterin ratio should be 2:1. Lulu's was 1:3. In the graph that came with it, her results were pictured in the high red, under " Chronic Evolution " , whatever that means! Sounded absolutely horrible to me, particularly as it was so far to the right of the page, way above the pink section, which listed all kinds of major viruses like EBV, CMV, Herpes, etc. Here are her actual results: Urinary Neopterin (NEO) 1501, reference range 110-180 Biopterin (BH4) 497, reference range 40-120 Crazy high values, huh? The weird thing is that if the sample had been compromised by exposure to light in any way, then the levels would have been lowered, not elevated. She's been checked for EBV and CMV and the like, but maybe she has an incredibly high viral load. I am still interested in the measles connection you mentioned -- she did have the MMR at age 17 months, with a very high fever and rash for several days. She always had high fevers with vaccinations, and some rashes. Varicella was big, too, and it came only one month after the MMR. Can you share with me anything else you learn about the connection they are making between neopterin and measles ro any other viruses? THANKS! Hugs, Theresa > > > > > > Hi we have just had pterine results and they are not good. > > Neopterine > > > and biopterin nearly the same, should be a 1/2 ratio. We have > > started > > > spironalacton to reduce neopterine and dr said would be a good > > idea to > > > give BH4 if we can get hold of it - they can't in the States. > Does > > > anyone here use it and how do you get it - it can't be sent to a > > > private address. > > > Thanks > > > Peta > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2006 Report Share Posted October 16, 2006 --Hi Theresa Do you have anyone to interpret the results for you? Charlie's were neopterin 420 biopeterin 453 We are with Bradstreet's clinic in Florida and my dr described Charlie's neopterine as chronically elevated. He said the spironalacton works by " tricking " the immune system - will find out more ( an alternative to IVIG's from what I gather). Our dr said his son( who is autistic) had neopterine level of 200 but he has spent $100,000 on IVIG's! Thanks for the e-mail - is BH4 helping Lulu? Our app's are never long enough! Peta - In Autism Treatment , " tltbaku " <tltbaku@...> wrote: > > Peta, > > I just sent you an email with the contact info for the pharmacies. > > That is interesting -- So normal biopterin:neopterin ratio should be > 2:1. Lulu's was 1:3. In the graph that came with it, her results > were pictured in the high red, under " Chronic Evolution " , whatever > that means! Sounded absolutely horrible to me, particularly as it > was so far to the right of the page, way above the pink section, > which listed all kinds of major viruses like EBV, CMV, Herpes, etc. > Here are her actual results: > > Urinary Neopterin (NEO) 1501, reference range 110-180 > Biopterin (BH4) 497, reference range 40-120 > > Crazy high values, huh? The weird thing is that if the sample had > been compromised by exposure to light in any way, then the levels > would have been lowered, not elevated. > > She's been checked for EBV and CMV and the like, but maybe she has > an incredibly high viral load. I am still interested in the measles > connection you mentioned -- she did have the MMR at age 17 months, > with a very high fever and rash for several days. She always had > high fevers with vaccinations, and some rashes. Varicella was big, > too, and it came only one month after the MMR. Can you share with me > anything else you learn about the connection they are making between > neopterin and measles ro any other viruses? THANKS! > > > > Hugs, > Theresa > > > > > > > > > > Hi we have just had pterine results and they are not good. > > > Neopterine > > > > and biopterin nearly the same, should be a 1/2 ratio. We have > > > started > > > > spironalacton to reduce neopterine and dr said would be a good > > > idea to > > > > give BH4 if we can get hold of it - they can't in the States. > > Does > > > > anyone here use it and how do you get it - it can't be sent to > a > > > > private address. > > > > Thanks > > > > Peta > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2006 Report Share Posted October 16, 2006 Thanks My dr did say he couldn't get hold of the BH4 so I will ask if they are using spiro instead. And will ask about effect on the kidneys. Do you know if BH4 is an ongoing supplement ie does the infammation/ neop/biop levels go back to where it was if you stop taking BH4 ( sorry - bad English) Peta- -- In Autism Treatment , " Cochran " <Ladyshrink111@...> wrote: > > Hi Peta, > > I did read the paper that Bradstreet wrote, wasn't supposed to but it was posted by accident? Mainly the spiro is used to reduce inflammation and maybe reducing testosterone is a side benefit as some believe the mercury binds to the testosterone and reducing it would help the excretion, this is not a proven fact, but a theory? > > Someone else posted on another board that BH4 could do the same thing (reduce inflammation) and the spiro was being used as the BH4 was harder to get. I don't know if this is true, Peta, but I am sure you will check it out. If true, BH4 has none of the side effects of spiro or even Actos, which I would consider before the spiro. > > I took spiro at one time, given short term as a direutic, which it is and I can tell you that it was hard on the kidneys, I had some kidney discomfort. Also as a direutic it would wash all water soluble nutrients out of the body quickly (I got huge muscle cramps probably due to the excretion of cal/mag/potassium. > > As with anything else, it is up to the individual parent to decide what are acceptable risks vs rewards. > > Good luck, > > Re: BH4 > > > > > > Hi Theresa > > I haven't had much time to talk to dr about this yet - we have > been > > having big problems with bacteria/fungus - but I am speaking to > him > > on Tuesday and will find out a lot more. He said the biopterine > > should be twice the level of the neopertine ( Charlie's is 1- 1). > The > > neopterine is poison and the spironalacton is reducing the > levels - > > I think this is fairly new but they are seeing good results. > > Are you using the BH4? Could you give me the name of the > pharmacy > > please - do they need a prescription - do they accept a US dr? > > I will post again after our consult. > > Thanks > > Peta- > > > > -- In Autism Treatment , " tltbaku " > > <tltbaku@> wrote: > > > > > > Peta, > > > > > > Can you clarify for me what you mean by a 1/2 ratio? Which > should > > > be higher? I don't understand the link with the MMR and > measles > > and > > > the elevated neopterin. Which doc do you see in Florida? Did > your > > > doctor tell you anything more about why they suggest using the > > > spironalocatone? I understand that it is an aldosterone > receptor > > > antagonist. It's used for patients with hyperaldosteronism, > low > > > potassium levels and fluid retention (also for high blood > > pressure). > > > It's supposed to make the body ele3minate water and sodium and > > thus > > > to spare potassium. I know that Dr. Yasko has a different, > > natural > > > protocol for this. She believes that elevated excretion of > > > potassium relative to sodium is a strong indicator for the ACE > > > deletion in the absence of appropriate supplementation. The > ACE > > > deletion results in elevated aldosterone levels, and if > > almdosterone > > > becomes elevated, you see high potassium and low sodium on a > > urinary > > > essentail elements test. Chronic stress can also cause > aldosterone > > > levels to rise, so you could have sodium retention and > potassium > > > wasting in that case, too. Lots of black licorice or > grapefruit > > > intake can also inhibit the enzyme that breaks down > aldosterone, > > and > > > then cause the low urinary sodium and high urinary potassium. > > > > > > I do have the name of a pharmacist in Switzerland who can send > BH4. > > > > > > Hugs, > > > Theresa > > > > > > > > > > > > > > > > > Hi we have just had pterine results and they are not good. > > > Neopterine > > > > and biopterin nearly the same, should be a 1/2 ratio. We > have > > > started > > > > spironalacton to reduce neopterine and dr said would be a > good > > > idea to > > > > give BH4 if we can get hold of it - they can't in the > States. > > Does > > > > anyone here use it and how do you get it - it can't be sent > to a > > > > private address. > > > > Thanks > > > > Peta > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 Peta, My take on this would be that while you are using the BH4, you would also want to be working on getting rid of bacteria, viruses and metals and supporting the immune system, the methylation cycle and glutathione levels so that you can bring the immune system back into a resting position. So for me, the BH4 would be part of a larger program to address the root causes of the immune dysregulation. That's my take, anyway. Did you get your biopterin/neopterin test done at the lab in Paris? Hugs, Theresa > > > > > > > > > > Hi we have just had pterine results and they are not good. > > > > Neopterine > > > > > and biopterin nearly the same, should be a 1/2 ratio. We > > have > > > > started > > > > > spironalacton to reduce neopterine and dr said would be a > > good > > > > idea to > > > > > give BH4 if we can get hold of it - they can't in the > > States. > > > Does > > > > > anyone here use it and how do you get it - it can't be > sent > > to a > > > > > private address. > > > > > Thanks > > > > > Peta > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 , You are SOOOOO sweet. Yes, we all have to share our own experiences and insights with one another. We have a long way to go with our kids -- at least we still have a long way to go with Lulu. She's pretty far from NT, with a big delay still. But she is really MOVING now. Everyone agrees on this -- her teachers, our friends, her extended family members - and two of these are very skeptical pediatric specialists who both said on Sunday that they see " surprisingly large progress " in her -- YIPPEEE! So I think we are really beginning to get at some of the microbes and metals that are hurting her. Much love to you..... xox, T > > > > > > > > > > > > Hi we have just had pterine results and they are not good. > > > > > Neopterine > > > > > > and biopterin nearly the same, should be a 1/2 ratio. We > > have > > > > > started > > > > > > spironalacton to reduce neopterine and dr said would be a > > good > > > > > idea to > > > > > > give BH4 if we can get hold of it - they can't in the > > States. > > > > Does > > > > > > anyone here use it and how do you get it - it can't be > sent > > to > > > a > > > > > > private address. > > > > > > Thanks > > > > > > Peta > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 Hi Theresa I'm so glad that Lulu is improving so much. It sounds like Dr Yasko's protocol is really working. I'm afraid I am not as knowledgeable as you and don't understand a lot of what you have written! I'm getting the impression that fixing the immune system is huge and still pretty experimental but I could be wrong. Yes we did have the tests done at the French lab - over the summer hols - very slow!( French postmen like the summer off!). As soon as you feel that you are getting somewhere you find out that something else is broken in their bodies - it makes me mad and sad - must do some body combat! Peta > > > > > > > > > > > > Hi we have just had pterine results and they are not good. > > > > > Neopterine > > > > > > and biopterin nearly the same, should be a 1/2 ratio. We > > have > > > > > started > > > > > > spironalacton to reduce neopterine and dr said would be a > > good > > > > > idea to > > > > > > give BH4 if we can get hold of it - they can't in the > > States. > > > > Does > > > > > > anyone here use it and how do you get it - it can't be > sent > > to > > > a > > > > > > private address. > > > > > > Thanks > > > > > > Peta > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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