Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 Deanna, Glad to hear you are doing so well on LDN. My teenage son started on LDN on 2/13 for colitis after 8 months of Remicade did nothing for him (last infusion was 12/15/08). He has seen some improvement, but not as dramatic as yours. Kind of two steps forward, one step back sometimes. He has had the added complication of recurring Cdiff infections and is on a tapering course of Vancomycin. I am wondering if there is a yeast issue from being on the Vanco since mid-December. Do you take any probiotics or supplements along with the LDN? I am curious because my son also started some new supplements shortly after the LDN and when he doesn't have a good day, I wonder if the LDN isn't working as it should or if one of the supplements isn't agreeing with him. Thanks Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 Deanna, Glad to hear you are doing so well on LDN. My teenage son started on LDN on 2/13 for colitis after 8 months of Remicade did nothing for him (last infusion was 12/15/08). He has seen some improvement, but not as dramatic as yours. Kind of two steps forward, one step back sometimes. He has had the added complication of recurring Cdiff infections and is on a tapering course of Vancomycin. I am wondering if there is a yeast issue from being on the Vanco since mid-December. Do you take any probiotics or supplements along with the LDN? I am curious because my son also started some new supplements shortly after the LDN and when he doesn't have a good day, I wonder if the LDN isn't working as it should or if one of the supplements isn't agreeing with him. Thanks Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 Deanna, Glad to hear you are doing so well on LDN. My teenage son started on LDN on 2/13 for colitis after 8 months of Remicade did nothing for him (last infusion was 12/15/08). He has seen some improvement, but not as dramatic as yours. Kind of two steps forward, one step back sometimes. He has had the added complication of recurring Cdiff infections and is on a tapering course of Vancomycin. I am wondering if there is a yeast issue from being on the Vanco since mid-December. Do you take any probiotics or supplements along with the LDN? I am curious because my son also started some new supplements shortly after the LDN and when he doesn't have a good day, I wonder if the LDN isn't working as it should or if one of the supplements isn't agreeing with him. Thanks Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 Hi Sally The only supplements I take are the Freeda Multi and B Complex (1 per day) calcium, Carlson's cod liver oil and a legal Vitamin D (3000 iu per day) I've heard that LDN takes sometimes months to regulate and help some people - hang in there. What dosage is he taking? I started out at 1.5 mg first week, then 2, then 2.5, now I'm at 3 mg and will eventually try 4.5mg which for people with IBD is the optimal dose I've heard. Deanna UC 5 years LDN 17 days SCD 14 months > > Deanna, > > Glad to hear you are doing so well on LDN. > > My teenage son started on LDN on 2/13 for colitis after 8 months of > Remicade did nothing for him (last infusion was 12/15/08). He has seen > some improvement, but not as dramatic as yours. Kind of two steps > forward, one step back sometimes. > He has had the added complication of recurring Cdiff infections and is > on a tapering course of Vancomycin. I am wondering if there is a yeast > issue from being on the Vanco since mid-December. > > Do you take any probiotics or supplements along with the LDN? > I am curious because my son also started some new supplements shortly > after the LDN and when he doesn't have a good day, I wonder if the LDN > isn't working as it should or if one of the supplements isn't agreeing > with him. > > Thanks > Sally > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 Hi Sally The only supplements I take are the Freeda Multi and B Complex (1 per day) calcium, Carlson's cod liver oil and a legal Vitamin D (3000 iu per day) I've heard that LDN takes sometimes months to regulate and help some people - hang in there. What dosage is he taking? I started out at 1.5 mg first week, then 2, then 2.5, now I'm at 3 mg and will eventually try 4.5mg which for people with IBD is the optimal dose I've heard. Deanna UC 5 years LDN 17 days SCD 14 months > > Deanna, > > Glad to hear you are doing so well on LDN. > > My teenage son started on LDN on 2/13 for colitis after 8 months of > Remicade did nothing for him (last infusion was 12/15/08). He has seen > some improvement, but not as dramatic as yours. Kind of two steps > forward, one step back sometimes. > He has had the added complication of recurring Cdiff infections and is > on a tapering course of Vancomycin. I am wondering if there is a yeast > issue from being on the Vanco since mid-December. > > Do you take any probiotics or supplements along with the LDN? > I am curious because my son also started some new supplements shortly > after the LDN and when he doesn't have a good day, I wonder if the LDN > isn't working as it should or if one of the supplements isn't agreeing > with him. > > Thanks > Sally > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 Hi Sally The only supplements I take are the Freeda Multi and B Complex (1 per day) calcium, Carlson's cod liver oil and a legal Vitamin D (3000 iu per day) I've heard that LDN takes sometimes months to regulate and help some people - hang in there. What dosage is he taking? I started out at 1.5 mg first week, then 2, then 2.5, now I'm at 3 mg and will eventually try 4.5mg which for people with IBD is the optimal dose I've heard. Deanna UC 5 years LDN 17 days SCD 14 months > > Deanna, > > Glad to hear you are doing so well on LDN. > > My teenage son started on LDN on 2/13 for colitis after 8 months of > Remicade did nothing for him (last infusion was 12/15/08). He has seen > some improvement, but not as dramatic as yours. Kind of two steps > forward, one step back sometimes. > He has had the added complication of recurring Cdiff infections and is > on a tapering course of Vancomycin. I am wondering if there is a yeast > issue from being on the Vanco since mid-December. > > Do you take any probiotics or supplements along with the LDN? > I am curious because my son also started some new supplements shortly > after the LDN and when he doesn't have a good day, I wonder if the LDN > isn't working as it should or if one of the supplements isn't agreeing > with him. > > Thanks > Sally > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 Hi Sally Forgot to mention that I also take 3 Lyosan acidophilus capsules per day (from Lucy's) Deanna -- In BTVC-SCD , " Deanna " wrote: > > Hi Sally > > The only supplements I take are the Freeda Multi and B Complex (1 per day) calcium, Carlson's cod liver oil and a legal Vitamin D (3000 iu per day) > > I've heard that LDN takes sometimes months to regulate and help some people - hang in there. What dosage is he taking? I started out at 1.5 mg first week, then 2, then 2.5, now I'm at 3 mg and will eventually try 4.5mg which for people with IBD is the optimal dose I've heard. > > Deanna > UC 5 years > LDN 17 days > SCD 14 months > > > > > > > Deanna, > > > > Glad to hear you are doing so well on LDN. > > > > My teenage son started on LDN on 2/13 for colitis after 8 months of > > Remicade did nothing for him (last infusion was 12/15/08). He has seen > > some improvement, but not as dramatic as yours. Kind of two steps > > forward, one step back sometimes. > > He has had the added complication of recurring Cdiff infections and is > > on a tapering course of Vancomycin. I am wondering if there is a yeast > > issue from being on the Vanco since mid-December. > > > > Do you take any probiotics or supplements along with the LDN? > > I am curious because my son also started some new supplements shortly > > after the LDN and when he doesn't have a good day, I wonder if the LDN > > isn't working as it should or if one of the supplements isn't agreeing > > with him. > > > > Thanks > > Sally > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 Deanna, Thanks for the info re supplements. Similar to Mark, but he has more things in the mix that could be factoring in. He's taking 4.5mg of the LDN transdermal cream. I'd emailed Dr. McCandless that developed the cream and that was what she recommended. In the back of my mind, I wonder about the carb factor as n had mentioned. SCD had not done anything for him for the year he was on it (perhaps because Cdiff was unknowingly in play as we learned later), so he has not been strict about it since Dec. I did call Dr. Jill at Penn State, who is doing the LDN study for Crohn's, and spoke with her nurse. The nurse said they did not restrict the diet of any of the trial participants and the people that got wonderful results were not on any special diet. I know Dr. McCandless though supports the no/low carb approach. Our holistic MD, the one who prescribed the LDN for us, thinks Mark should do a 7day course of Diflucan in case yeast is an issue. I'm leaning toward doing that. Just get nervous re die-off as it is very difficult for a high schooler to deal with running (literally) to the bath and hoping to get there in time. But if yeast is an issue, we do need to treat it to make progress. Anyone have experience with Diflucan? Does it cause extreme die-off symptoms? When Mark collected a sample for Cdiff test this morning (the doctor that has him on Vanco wants it monitored as we lower the dose), there was blood, which is very atypical for him and hadn't been seen for a long time. The nurse things we overdid it on the probiotics (doubled the Florastor the last couple of days) Sorry for the ramble. Just trying to get my thoughts in order for when he comes home from school shortly. Thanks Sally Quote Link to comment Share on other sites More sharing options...
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