Guest guest Posted September 28, 2010 Report Share Posted September 28, 2010 Hi Nicky, the problem with getting OF to market, I think, was that one of the main people on the development sideswitched companies before the Danish lot had completed development but I don't know timescales for availability. There are a number of tests for Aspergillus available but you would need to discuss this with your clinician. It is usually contracted by inhalation and blood testing is normally required. There is no toxicology literature on Movicol that can find quickly which suggests, given how widely used it is that it does not typically present with any oxalate issues but I will look into this a bit further. Ken From: Nikki <nikki-mills@...>Subject: Oxalates, aspergillus...???Autism Treatment Date: Tuesday, 28 September, 2010, 9:01 Hi Ken,my son is hyperoxaluric and has benefitted from doing LOD, with him it seems to be an ongoing issue and i would love to be able to help him more with this problem. Which is why i was wondering whether you had any idea when the oxalobacter suppliment is going to be made available? I have been reading about it being 'developed' for quite a few years now and i would love to hear that it is going to be on the market soon, do you have any idea if this is going to happen in the near future???Also, what would be the best test to do, to find out if Aspergillus is a problem?The other thing that i have found to be a problem for my ds is Movicol, which is polyethylene glycol '3350', which is similar (but not the same) in structure to ethylene glycol. He seems to metabolise this into oxalic acid causing himself alot of problems. Do you have any idea why this is, as other kids can take this laxative without any problems?Tia, Nikki x> > From: MaddiganV@... <MaddiganV@...>> Subject: Re: Re: ? on Biocidin> Autism Treatment > Date: Monday, 27 September, 2010, 16:24> > > > > > > > > > > > > > > > >  > > > > > > > > > > > > > >  is terrible with oxalate's we have to check > everything.  I'm hearing that this is probably his problem with Vit > C. He was practically reared on antibiotics.  What I would love to > know though is LOD going to be for life?  His gut is very much healed > but oxalate's remain a problem.> Vicky                                                                                                                                                         > In a message dated 27/09/2010 16:20:36 GMT Daylight Time, > drken.aitken@... writes:> Bill > has done one study where he found hyperoxaluria in a high proportion of > children with ASD. This can be genetic but can also be due to Xs use of > antibiotics in trhe early stages of gut colonization as oxalobacter formigenes > which captures oxalates from plant matter in the diet is extremely sensitive > to most broad spectrum antibiotic meds. I have a number of people who have > clear evidence of hyperoxaluria and a low oxalate diet can make a huge > difference. (There is a chapter on this in my diet book). > > > Ken> >  > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2010 Report Share Posted September 28, 2010 Hi Nicky, the problem with getting OF to market, I think, was that one of the main people on the development sideswitched companies before the Danish lot had completed development but I don't know timescales for availability. There are a number of tests for Aspergillus available but you would need to discuss this with your clinician. It is usually contracted by inhalation and blood testing is normally required. There is no toxicology literature on Movicol that can find quickly which suggests, given how widely used it is that it does not typically present with any oxalate issues but I will look into this a bit further. Ken From: Nikki <nikki-mills@...>Subject: Oxalates, aspergillus...???Autism Treatment Date: Tuesday, 28 September, 2010, 9:01 Hi Ken,my son is hyperoxaluric and has benefitted from doing LOD, with him it seems to be an ongoing issue and i would love to be able to help him more with this problem. Which is why i was wondering whether you had any idea when the oxalobacter suppliment is going to be made available? I have been reading about it being 'developed' for quite a few years now and i would love to hear that it is going to be on the market soon, do you have any idea if this is going to happen in the near future???Also, what would be the best test to do, to find out if Aspergillus is a problem?The other thing that i have found to be a problem for my ds is Movicol, which is polyethylene glycol '3350', which is similar (but not the same) in structure to ethylene glycol. He seems to metabolise this into oxalic acid causing himself alot of problems. Do you have any idea why this is, as other kids can take this laxative without any problems?Tia, Nikki x> > From: MaddiganV@... <MaddiganV@...>> Subject: Re: Re: ? on Biocidin> Autism Treatment > Date: Monday, 27 September, 2010, 16:24> > > > > > > > > > > > > > > > >  > > > > > > > > > > > > > >  is terrible with oxalate's we have to check > everything.  I'm hearing that this is probably his problem with Vit > C. He was practically reared on antibiotics.  What I would love to > know though is LOD going to be for life?  His gut is very much healed > but oxalate's remain a problem.> Vicky                                                                                                                                                         > In a message dated 27/09/2010 16:20:36 GMT Daylight Time, > drken.aitken@... writes:> Bill > has done one study where he found hyperoxaluria in a high proportion of > children with ASD. This can be genetic but can also be due to Xs use of > antibiotics in trhe early stages of gut colonization as oxalobacter formigenes > which captures oxalates from plant matter in the diet is extremely sensitive > to most broad spectrum antibiotic meds. I have a number of people who have > clear evidence of hyperoxaluria and a low oxalate diet can make a huge > difference. (There is a chapter on this in my diet book). > > > Ken> >  > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2010 Report Share Posted September 28, 2010 The vitk protocol has a different idea about dealing with oxalates. We haven't done the full vitk protocol, just some bits of it. I don't know if anyone here has used it specifically for oxalates?? It was reading the vitk info that helped us decide not to go LOD (though we did keep a general eye on oxalates in the diet so we didn't go high - so we were on a kind of " not high oxalate diet " - NHOD :-)) Our son tested high for oxalates but at the time it wasn't possible to restrict his diet (we were hugely restricted by profound allergies and intolerances). VitaminK/ The vitk view is that oxalates are generated internally, not so much from foods high in oxalates. " The first step of energy generation is called glycolysis, which involves splitting glucose into two pyruvate molecules. When oxygen is available, pyruvate is converted to acetyl coenzyme A, or CoA. When oxygen is not available, pyruvate is converted to lactate. (Circulating lactate levels are high in kids with autism). Lactate can be converted back to pyruvate in the liver, by an enzyme called lactate dehydrogenase. However, I believe that this is the metabolic step where oxalate is being produced, because if pH drops (becomes acidic) then lactate dehydrogenase will synthesize oxalate instead of nudging excess lactate back to pyruvate. " Best wishes, Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2010 Report Share Posted September 29, 2010 Thanks Ken, I had a look at Aspergillus on the web, found this really good site with lots of info including testing, if anyone else wants to look at it: http://www.aspergillus.org.uk/ From reading about it, it would seem it could be a major problem if you have a compromised immune system (that would fit some of our kids wouldn't it?). Plus minor problems if you have asthma and allergies (some of our kids again!). Aspergillus is the black mould that grows in damp places eg a poorly ventilated bathroom. It sounds like it can be nasty stuff for some people. I would appreciate hearing anything you discover about Movicol. I did look at it some time ago and the thing that really bothered me wass that the manufacturers recommend that it is not used for longer that 2 weeks, whereas in this country (and other countries i expect) it is used for much longer as if it is perfectly safe, which i somehow doubt considering my sons reaction to it. Tia, Nikki > > Hi Nicky, >  > the problem with getting OF to market, I think, was that one of the main people on the development sideswitched companies before the Danish lot had completed development but I don't know timescales for availability. >  > There are a number of tests for Aspergillus available but you would need to discuss this with your clinician. It is usually contracted by inhalation and blood testing is normally required. >  > There is no toxicology literature on Movicol that can find quickly which suggests, given how widely used it is that it does not typically present with any oxalate issues but I will look into this a bit further. >  > Ken   > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2010 Report Share Posted September 29, 2010 Thank you for posting this Sandy, it is very informative. I was wondering where the quote below re: Glycolysis etc, was taken from and could you point me towards where to find it as i would like to explore the details in more depth. Tia, Nikki x > > The vitk protocol has a different idea about dealing with oxalates. > > We haven't done the full vitk protocol, just some bits of it. I don't know if anyone here has used it specifically for oxalates?? It was reading the vitk info that helped us decide not to go LOD (though we did keep a general eye on oxalates in the diet so we didn't go high - so we were on a kind of " not high oxalate diet " - NHOD :-)) Our son tested high for oxalates but at the time it wasn't possible to restrict his diet (we were hugely restricted by profound allergies and intolerances). > > VitaminK/ > > The vitk view is that oxalates are generated internally, not so much from foods high in oxalates. > " The first step of energy generation is called glycolysis, which involves splitting glucose into two pyruvate molecules. When oxygen is available, pyruvate is converted to acetyl coenzyme A, or CoA. When oxygen is not available, pyruvate is converted to lactate. (Circulating lactate levels are high in kids with autism). Lactate can be converted back to pyruvate in the liver, by an enzyme called lactate dehydrogenase. However, I believe that this is the metabolic step where oxalate is being produced, because if pH drops (becomes acidic) then lactate dehydrogenase will synthesize oxalate > instead of nudging excess lactate back to pyruvate. " > > Best wishes, Sandy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2010 Report Share Posted September 30, 2010 Hi just to let you know that KiB500 is great at clearing aspergillus – you can get it out of the system by taking it orally and by nebulising direct into the lungs...... Lx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2010 Report Share Posted October 1, 2010 Thanks Lucinda, that's good to know, have you tried this out yourself or on any patients? Nikki x > > > > Hi just to let you know that KiB500 is great at clearing aspergillus - you > can get it out of the system by taking it orally and by nebulising direct > into the lungs...... > > > > Lx > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.