Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 We have phone consult with him tomorrow, I am going to ask for it too. In the meantime I heard Dr JM mentioning the price of 19 US dollars per month (talked about how cheap it was) so I guess it should not be much more over here, even with conversion rates shipping etc. have a look at her list for more info - under 'files' and 'database', there are also lots of parents reports there. Natasa > > Hello list mates, > > I wonder if anyone is using LDN? I asked to DrH.about it and he > suggested to try it for a month.I asked the cost but I couldn't get > the information.Howmuch does Breakspear charge for it? > If anyone is using TDLDN ,could you share,please.Because I am still > hesitant. > Thanks > > Nevin > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 Hi We started on Sunday. Going well so far. nice thick cream in syringes that is easy to apply. So far is very perky and happy - nothing you can put your finger on for definite yet. Will keep you posted. We are on a very low dose for the first week and going up to 0.5ml next week. Tinatiredbee2001 <Nevin.Penny@...> wrote: Hello list mates,I wonder if anyone is using LDN? I asked to DrH.about it and hesuggested to try it for a month.I asked the cost but I couldn't getthe information.Howmuch does Breakspear charge for it?If anyone is using TDLDN ,could you share,please.Because I am stillhesitant.ThanksNevinDISCLAIMERNo information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2006 Report Share Posted January 12, 2006 Hi Nevin We used LDN in the summer, from the Breakspear. We were prescribed x5 3ml syringes which cost £7.00 each, a total of £41.13 (with Vat added). We also started on very low dose, about 1ml a night. So they lasted about 6 weeks. However for us LDN didn't work, in fact it created a lot of sleep problems! So after we had completed the course and had discussed it with Dr Heard, we stopped using it. Kay. > > Hello list mates, > > I wonder if anyone is using LDN? I asked to DrH.about it and he > suggested to try it for a month.I asked the cost but I couldn't get > the information.Howmuch does Breakspear charge for it? > If anyone is using TDLDN ,could you share,please.Because I am still > hesitant. > Thanks > > Nevin > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2006 Report Share Posted January 12, 2006 Hi Kay I think 1ml is a high dose. The standed dose is 3mg which is 0.5ml per day. I think you do get sleep issues if the dose is too high. Also you cn get issues if you are not 100% dairy/gluten free. TinaKay Lowney <kay.steve@...> wrote: Hi NevinWe used LDN in the summer, from the Breakspear. We were prescribed x5 3ml syringes which cost £7.00 each, a total of £41.13 (with Vat added). We also started on very low dose, about 1ml a night. So they lasted about 6 weeks. However for us LDN didn't work, in fact it created a lot of sleep problems! So after we had completed the course and had discussed it with Dr Heard, we stopped using it.Kay. >> Hello list mates,> > I wonder if anyone is using LDN? I asked to DrH.about it and he> suggested to try it for a month.I asked the cost but I couldn't get> the information.Howmuch does Breakspear charge for it?> If anyone is using TDLDN ,could you share,please.Because I am still> hesitant.> Thanks> > Nevin>DISCLAIMERNo information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2006 Report Share Posted January 12, 2006 Hi Tina Sorry you are quite correct, ignore my post previously. Each syringe was 3ml, and each syringe lasted about 6 days, so we must have been giving him no more than 1/2 ml per night and we started on at least 1/2 that quantity for the first week, ie 1/4 ml per night. We have been totally GF/Cf for the last 2 1/2 years. However we did not do well on it at all, especially sleep wise but also mood was not helped at all during the day (one of Louis's major issues). I know that there are lots of good reports about it, I too became a member of LDN yayoo group and followed the progress back in June/July. Just the way it is I suppose, not all our children react the same way. Kay. - In Autism Treatment , SIMON WOOD <simon_tinawood@b...> wrote: > > Hi Kay > > I think 1ml is a high dose. The standed dose is 3mg which is 0.5ml per day. I think you do get sleep issues if the dose is too high. Also you cn get issues if you are not 100% dairy/gluten free. > > Tina > > Kay Lowney <kay.steve@n...> wrote: > Hi Nevin > > We used LDN in the summer, from the Breakspear. > > We were prescribed x5 3ml syringes which cost £7.00 each, a total of > £41.13 (with Vat added). We also started on very low dose, about 1ml > a night. So they lasted about 6 weeks. > > However for us LDN didn't work, in fact it created a lot of sleep > problems! So after we had completed the course and had discussed it > with Dr Heard, we stopped using it. > > Kay. > > > > > > > > > Hello list mates, > > > > I wonder if anyone is using LDN? I asked to DrH.about it and he > > suggested to try it for a month.I asked the cost but I couldn't get > > the information.Howmuch does Breakspear charge for it? > > If anyone is using TDLDN ,could you share,please.Because I am still > > hesitant. > > Thanks > > > > Nevin > > > > > > > > > DISCLAIMER > No information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2006 Report Share Posted January 12, 2006 Hi Wonder if someone could explain re the GF/CF issue? Is it OK if you are using enzymes? Just a bit confused as I THOUGHT Mandi was going to try it and I don't think that they are GF/CF??? TIA Jacqui > > > > > > Hello list mates, > > > > > > I wonder if anyone is using LDN? I asked to DrH.about it and he > > > suggested to try it for a month.I asked the cost but I couldn't > get > > > the information.Howmuch does Breakspear charge for it? > > > If anyone is using TDLDN ,could you share,please.Because I am > still > > > hesitant. > > > Thanks > > > > > > Nevin > > > > > > > > > > > > > > > > > DISCLAIMER > > No information contained in this post is to be construed as > medical advice. If you need medical advice, please seek it from a > suitably qualified practitioner. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2006 Report Share Posted January 12, 2006 Hi, We've been on LDN since October - saw some amazing things early on - very gradually ramped up to full dose. Defintely made him sicker in the traditional sense, so obviously working away on the immune system. We will do 6 months and review. It's true that it's one of the cheapest meds available, in the States at least. You can get alos get it from the Farmacia Fiorentini in Italy - they accept foreign prescriptions-. I was quoted 60 euro for a two month supply, whichis comparable to US prices. Shipping is 50 Euro though. As Paolo posted recently, they do B12 too -shots and spray. HTH Anne-Marie > > Hello list mates, > > I wonder if anyone is using LDN? I asked to DrH.about it and he > suggested to try it for a month.I asked the cost but I couldn't get > the information.Howmuch does Breakspear charge for it? > If anyone is using TDLDN ,could you share,please.Because I am still > hesitant. > Thanks > > Nevin > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2006 Report Share Posted January 12, 2006 -- > > Hi! > > -Thanks everybody for your quick responses.We may be in trouble about the GF/CF diets issue using with LDN,because I leaked the diet recently with the support of enzimes.We'll see.I will inform you how it goes. Warmly, nevin > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2006 Report Share Posted January 12, 2006 We did this for a couple of months without any noticeable difference. Do be careful to start on a lowish dose as it REALLY suppressed Tom's appetite. Only got it back after we went down to one line. We'd try it again but didn't see any particular benefits or problems. > > Hello list mates, > > I wonder if anyone is using LDN? I asked to DrH.about it and he > suggested to try it for a month.I asked the cost but I couldn't get > the information.Howmuch does Breakspear charge for it? > If anyone is using TDLDN ,could you share,please.Because I am still > hesitant. > Thanks > > Nevin > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2006 Report Share Posted January 13, 2006 Nice to have you back Mandi We are seeing Dr H next Tues and I shall ask him about LDN (amongst a million other things!) Do you or anyone else know if he can get measles titers done and the cost? Jess is an MMR babe and had definate slump after so would like to get these done with a view to doing high dose Vit A. Jacqui > > > > Wonder if someone could explain re the GF/CF issue? Is it OK if you > are using enzymes? Just a bit confused as I THOUGHT Mandi was going > to try it and I don't think that they are GF/CF??? > > > >>>we already did try it for 3 weeks - the oral - pain in the arse to dose > but we had positive response, no probs with sleep, great shiney eyes, good > humour and lots of mischief. I wnat some TD. Dr Heard has not reponded to my > last two emails, sent same day which is unusal as he normally replies within 24 > hours. > > He ius wroking on the annual cost quote for the PCT who want estmates for > this and that before we have even have the tests to see what we need to do. So I > think we are makling it up based on what I wnat to do and he suggest which > do mostly match. > > I just wnat to get on with the LDn, its hardly going to break the bank but > would be nice to have immune panel markers first. Its the HPPIV6 that I am sure > is an issue for Sam. Very nasty chicken pox between 4 and 5 months, came > close after 3rd DPT etc > > Mandi x > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2006 Report Share Posted January 13, 2006 Hi, on has been on TD LDN since last September. We had a couple of disturbed nights in the 1st week but since he is sleeping through. As he is on many treatments it is always hard to decide on the benefit of each one. However for a child that is usually plagued by viruses, cold and cough all winter this winter he has only been of school for a couple of days with a bad cough. We plan to continue with it. Sally in Manchester Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2006 Report Share Posted January 13, 2006 Hi Mandi, Great to have you back - how was the trip? You may notice I've had to change email address and did try to send you notification of it but it failed to arive - so can you make note of my new address? Re the viral issues you mentioned just thought you'd be interested to know that Dr Mc is suggesting we try Jack on valtrex. Despite him not having any elevated IgM titers in his I.S panel of a few years back she says she is seeing benefits even in kids without particularly elevated titers which may well be down to a lot of hidden viral problems which are not identifiable easily. We are going to give it a try. The actos has not made a significant difference and Dr M is finding that the TD LDN is doing the same job but a lot more cheaply! Will keep you posted as and when we start the valtrex. We are now using the nasal B12 spray 1250mcg daily. So far so good and very easy to give - just like a vicks nasal spray - beats the stealth nightime injections!!! Love On 13/01/06, npower2003 <jacqui@...> wrote: Nice to have you back MandiWe are seeing Dr H next Tues and I shall ask him about LDN (amongst a million other things!) Do you or anyone else know if he can getmeasles titers done and the cost? Jess is an MMR babe and haddefinate slump after so would like to get these done with a view todoing high dose Vit A. Jacqui--- In Autism Treatment , Mum231ASD@a...wrote:>>>> Wonder if someone could explain re the GF/CF issue? Is it OK if you> are using enzymes? Just a bit confused as I THOUGHT Mandi wasgoing> to try it and I don't think that they are GF/CF???>>> >>>we already did try it for 3 weeks - the oral - pain in the arse to dose> but we had positive response, no probs with sleep, great shineyeyes, good> humour and lots of mischief. I wnat some TD. Dr Heard has notreponded to my> last two emails, sent same day which is unusal as he normally replies within 24> hours.>> He ius wroking on the annual cost quote for the PCT who wantestmates for> this and that before we have even have the tests to see what weneed to do. So I > think we are makling it up based on what I wnat to do and hesuggest which> do mostly match.>> I just wnat to get on with the LDn, its hardly going to break thebank but> would be nice to have immune panel markers first. Its the HPPIV6 that I am sure> is an issue for Sam. Very nasty chicken pox between 4 and 5months, came> close after 3rd DPT etc>> Mandi x>DISCLAIMERNo information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2006 Report Share Posted January 13, 2006 HI Not sure if they can do MMR or not Check this lab out http://www.mullhaven.co.uk/index1.htm in Bedford not far from there. They do all sorts of tests and blood draws for a tenner ! Joanne > > > > > > > > Wonder if someone could explain re the GF/CF issue? Is it OK if > you > > are using enzymes? Just a bit confused as I THOUGHT Mandi was > going > > to try it and I don't think that they are GF/CF??? > > > > > > >>>we already did try it for 3 weeks - the oral - pain in the > arse to dose > > but we had positive response, no probs with sleep, great shiney > eyes, good > > humour and lots of mischief. I wnat some TD. Dr Heard has not > reponded to my > > last two emails, sent same day which is unusal as he normally > replies within 24 > > hours. > > > > He ius wroking on the annual cost quote for the PCT who want > estmates for > > this and that before we have even have the tests to see what we > need to do. So I > > think we are makling it up based on what I wnat to do and he > suggest which > > do mostly match. > > > > I just wnat to get on with the LDn, its hardly going to break the > bank but > > would be nice to have immune panel markers first. Its the HPPIV6 > that I am sure > > is an issue for Sam. Very nasty chicken pox between 4 and 5 > months, came > > close after 3rd DPT etc > > > > Mandi x > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2006 Report Share Posted January 13, 2006 Thanks Joanne - will do!! Jacqui > > > > > > > > > > > > Wonder if someone could explain re the GF/CF issue? Is it OK > if > > you > > > are using enzymes? Just a bit confused as I THOUGHT Mandi was > > going > > > to try it and I don't think that they are GF/CF??? > > > > > > > > > >>>we already did try it for 3 weeks - the oral - pain in the > > arse to dose > > > but we had positive response, no probs with sleep, great shiney > > eyes, good > > > humour and lots of mischief. I wnat some TD. Dr Heard has not > > reponded to my > > > last two emails, sent same day which is unusal as he normally > > replies within 24 > > > hours. > > > > > > He ius wroking on the annual cost quote for the PCT who want > > estmates for > > > this and that before we have even have the tests to see what we > > need to do. So I > > > think we are makling it up based on what I wnat to do and he > > suggest which > > > do mostly match. > > > > > > I just wnat to get on with the LDn, its hardly going to break > the > > bank but > > > would be nice to have immune panel markers first. Its the HPPIV6 > > that I am sure > > > is an issue for Sam. Very nasty chicken pox between 4 and 5 > > months, came > > > close after 3rd DPT etc > > > > > > Mandi x > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2006 Report Share Posted January 15, 2006 In a message dated 13/01/2006 13:22:11 GMT Standard Time, catherine.devereux@... writes: Re the viral issues you mentioned just thought you'd be interested to know that Dr Mc is suggesting we try Jack on valtrex. Despite him not having any elevated IgM titers in his I.S panel of a few years back she says she is seeing benefits even in kids without particularly elevated titers which may well be down to a lot of hidden viral problems which are not identifiable easily. We are going to give it a try. The actos has not made a significant difference and Dr M is finding that the TD LDN is doing the same job but a lot more cheaply! Will keep you posted as and when we start the valtrex. We are now using the nasal B12 spray 1250mcg daily. So far so good and very easy to give - just like a vicks nasal spray - beats the stealth nightime injections!!! >>>Be sure to keep us updated - Sam wouldn;t have any of it, so shots it has to be! Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2006 Report Share Posted January 15, 2006 In a message dated 13/01/2006 13:22:11 GMT Standard Time, catherine.devereux@... writes: Re the viral issues you mentioned just thought you'd be interested to know that Dr Mc is suggesting we try Jack on valtrex. Despite him not having any elevated IgM titers in his I.S panel of a few years back she says she is seeing benefits even in kids without particularly elevated titers which may well be down to a lot of hidden viral problems which are not identifiable easily. We are going to give it a try. The actos has not made a significant difference and Dr M is finding that the TD LDN is doing the same job but a lot more cheaply! Will keep you posted as and when we start the valtrex. We are now using the nasal B12 spray 1250mcg daily. So far so good and very easy to give - just like a vicks nasal spray - beats the stealth nightime injections!!! >>>Be sure to keep us updated - Sam wouldn;t have any of it, so shots it has to be! Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 I'm trying to get transdermal LDN for my son. However, I'm running into many doctors that aren't receptive to the idea despite overwhelming articles and personal experiences I provide. I'm been told you can " make " it yourself and know where to get it in pill form but how hard is it to compound it at home? I'm definitely no chemistry major and would prefer to buy it in TD form but that doesn't seem to be happening in the near future. TIA. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 --- In low dose naltrexone , " ilovemygooby " <ilovemygooby@...> wrote: > > I'm trying to get transdermal LDN for my son. However, I'm running > into many doctors that aren't receptive to the idea despite > overwhelming articles and personal experiences I provide. > > I'm been told you can " make " it yourself and know where to get it in > pill form but how hard is it to compound it at home? I'm definitely no > chemistry major and would prefer to buy it in TD form but that doesn't > seem to be happening in the near future. > > TIA. > ========== Dr. McCandless who uses TD LDN for autism suggests Coastal Compounding 912-354-5188 for fast release Transdermal LDN. Quote Link to comment Share on other sites More sharing options...
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