Re: very tired (was LDN 3mg. vs 4.5)

[Guest guest]

Mara,I don't think my son has had any mood elevation; in fact he seems more irritable. Also, he is very tired...was in bed yesterday until about 4:00 and today until noon. This is not like him at all. Also, can you speak to the platelet concern? There seems to be a side effect regarding them and I don't know what that means for a UC person.Thanks.Eileen LDN 3mg. vs 4.5 I realize as I type that this is most likely a question for the LDN list but thought I would throw it out here as well...is there a major difference between 3 and 4.5 mg doses? It seems I have been reading alot of posts talking about even lower doses. Does this have anything to do with the health issue being addressed?Eileen

[Guest guest]

Eileen,I'm not saying mood elevation happens all at once, just that it is a positive effect youmay notice after time. Don't know why your son was more tired - perhaps the filler - you should askwhat was used, he may have reacted. Some of them use acidophilus or otherthings with lactose. So there may be a reaction. Or, it may be too high a dosefor him.If your son only weighs 122 than he should not start with 4.5. Have him start with1.5 for a week or two and then move up to 3.0 to see how he does. If you want tobe more cautious, increase slowly between 1.5 and 3.0. And then see if he wantsto increase up to 3.6 or 4.0 until he finds an optimal dose. I think 4.5 is too much for him at the moment. Hadn't realized he weighed so little. I have no clue about the platelet concern - that's the first I heard of it - however,Jayne mentioned in her post that she was not sure whether it was the LDN oranother drug or something else causing that. I suggest you wait to worry untilthe results are in unless platelets are a big concern of yours already. Also, Jayne used it for quite a while, not a mere few days. Ask your pharmacist if he will give you the transdermal cream instead - made upwith the formula from coastalcompounding.com. But you may have to get yourphysician to call in the transdermal script - I think that is likely. But that is theformula to use, since it has been tested to be non-reactive in reactive people. And, I've heard that they are quite generous at sharing the formula with otherpharmacies. MaraMara,I don't think my son has had any mood elevation; in fact he seems more irritable. Also, he is very tired...was in bed yesterday until about 4:00 and today until noon. This is not like him at all. Also, can you speak to the platelet concern? There seems to be a side effect regarding them and I don't know what that means for a UC person.Thanks.Eileen LDN 3mg. vs 4.5 I realize as I type that this is most likely a question for the LDN list but thought I would throw it out here as well...is there a major difference between 3 and 4.5 mg doses? It seems I have been reading alot of posts talking about even lower doses. Does this have anything to do with the health issue being addressed?Eileen

[Guest guest]

Thanks so much Mara. I am seeing my pharmacist tomorrow and will talk to her about the transdermal cream. Is there any place in particular where it should be applied?Eileen LDN 3mg. vs 4.5 I realize as I type that this is most likely a question for the LDN list but thought I would throw it out here as well...is there a major difference between 3 and 4.5 mg doses? It seems I have been reading alot of posts talking about even lower doses. Does this have anything to do with the health issue being addressed?Eileen

[Guest guest]

Inside the wrist or elbow. Thanks so much Mara. I am seeing my pharmacist tomorrow and will talk to her about the transdermal cream. Is there any place in particular where it should be applied?Eileen

[Guest guest]

The pharmacist assured me there was nothing illegal because they used a cellose plant based substance for filler. She also did not think that the dosage was too strong since that is what was used by Jill at Penn State for the UC/Crohns study. I realize she is not a doctor nor has personal experience like people here on the list, but she seemed skeptical about the benefit of dermal over oral due to the gut issue.

So...now we need to decide dermal or oral, 3.0 or 4.5. Thoughts anyone?

Also, my son is looking very washed out and I am very concerned about his iron level. He was determined anemic last fall, iron count was I believe at 9 even though he had been taking iron. He was given an iron infusion which helped him get to a count of 11, still shy of what they say is acceptable. I am at a loss what to do for him right now. He is still very tired. The GP who prescribed the LDN for him also ordered some blood work and I am expecting the results to be poor in this regard. What to do?

He also does not have much of an appetite since the fever last week...kind of looks like he is wasting away and I'm worried about him returning to the bad state he was in last year at this time. I was hoping he would be feeling better after 3 months into SCD.

Feeling kind of unsettled about all of this...

Eileen

Mother of 19 yo son

UC Re: very tired (was LDN 3mg. vs 4.5)

Inside the wrist or elbow.

Thanks so much Mara. I am seeing my pharmacist tomorrow and will talk to her about the transdermal cream. Is there any place in particular where it should be applied?

Eileen

[Guest guest]

Eileen, I received an iron level of 21 recently and began iron pills per my gasto..Im hoping my energy gets better soon. He advised against an infusion today based on side effects. He told me any lower and it starts to affect your red blood cells which in turn makes you even more fatigued. Im sure your son is beyond tired at a count of 9 and would fall into this issue of depleting the red blood cells, although Im going by what I remember in todays follow up appt I had. He compared my 21 level as catching it right in time before this happened. I think the average iron level is 49 to 149 or in that range.. During the yearly conference he attends LDN has never been mentioned. He is a great gasto that took me 3 months to see and although plays it up the

middle in terms of diet and I cannot fault him for that as these illnesses are beyond difficult in my opinion... I think the success stories for SCD are great although I see a lot of people beating themselves up when they make a mistake which they shouldnt do..its tough to be perfect.

To: BTVC-SCD Sent: Mon, September 13, 2010 7:31:58 PMSubject: Re: very tired (was LDN 3mg. vs 4.5)

The pharmacist assured me there was nothing illegal because they used a cellose plant based substance for filler. She also did not think that the dosage was too strong since that is what was used by Jill at Penn State for the UC/Crohns study. I realize she is not a doctor nor has personal experience like people here on the list, but she seemed skeptical about the benefit of dermal over oral due to the gut issue.

So...now we need to decide dermal or oral, 3.0 or 4.5. Thoughts anyone?

Also, my son is looking very washed out and I am very concerned about his iron level. He was determined anemic last fall, iron count was I believe at 9 even though he had been taking iron. He was given an iron infusion which helped him get to a count of 11, still shy of what they say is acceptable. I am at a loss what to do for him right now. He is still very tired. The GP who prescribed the LDN for him also ordered some blood work and I am expecting the results to be poor in this regard. What to do?

He also does not have much of an appetite since the fever last week...kind of looks like he is wasting away and I'm worried about him returning to the bad state he was in last year at this time. I was hoping he would be feeling better after 3 months into SCD.

Feeling kind of unsettled about all of this...

Eileen

Mother of 19 yo son

UC Re: very tired (was LDN 3mg. vs 4.5)

Inside the wrist or elbow.

Thanks so much Mara. I am seeing my pharmacist tomorrow and will talk to her about the transdermal cream. Is there any place in particular where it should be applied?

Eileen

[Guest guest]

>>> The pharmacist assured me there was nothing illegal because they used a > cellose plant based substance for filler. She also did not think that > the dosage was too strong since that is what was used by Jill at > Penn State for the UC/Crohns study. I realize she is not a doctor nor > has personal experience like people here on the list, but she seemed > skeptical about the benefit of dermal over oral due to the gut issue.>>>> So...now we need to decide dermal or oral, 3.0 or 4.5. Thoughts anyone?>There are a number of people with Crohn's or colitis who use the cream form of LDN.  I'm not one of them (I've got Crohn's; have had since the early 1980s). I haven't found the capsules to be a problem, though I haven't tried the cream. For some people that apparently works better, since there's no possibility that anything in the gut will impede the LDN's absorbtion. The capsule form works very well for me. n >>> Also, my son is looking very washed out and I am very concerned about > his iron level. He was determined anemic last fall, iron count was I > believe at 9 even though he had been taking iron. He was given an iron > infusion which helped him get to a count of 11, still shy of what they > say is acceptable. I am at a loss what to do for him right now. He is > still very tired. The GP who prescribed the LDN for him also ordered > some blood work and I am expecting the results to be poor in this > regard. What to do?>>>> He also does not have much of an appetite since the fever last > week...kind of looks like he is wasting away and I'm worried about him > returning to the bad state he was in last year at this time. I was > hoping he would be feeling better after 3 months into SCD.>>>> Feeling kind of unsettled about all of this...>>>> Eileen>> Mother of 19 yo son>> UC> Re: very tired (was LDN 3mg. vs 4.5)>>  >>>>> Inside the wrist or elbow.  >>>>>>>> >>>>>>> Thanks so much Mara. I am seeing my pharmacist tomorrow and will talk to > her about the transdermal cream. Is there any place in particular where > it should be applied?>>> Eileen>>-- Now available. A fine gift for cat lovers:Confessions of a Cataholic: My Life With the 10 Cats Who Caused My Addictionby n Van Tilwww.wordpowerpublishing.com ; signed copies; free shipping in U.S., reduced shipping elsewhere

[Guest guest]

>>> The pharmacist assured me there was nothing illegal because they used a > cellose plant based substance for filler. She also did not think that > the dosage was too strong since that is what was used by Jill at > Penn State for the UC/Crohns study. I realize she is not a doctor nor > has personal experience like people here on the list, but she seemed > skeptical about the benefit of dermal over oral due to the gut issue.>>>> So...now we need to decide dermal or oral, 3.0 or 4.5. Thoughts anyone?>There are a number of people with Crohn's or colitis who use the cream form of LDN.  I'm not one of them (I've got Crohn's; have had since the early 1980s). I haven't found the capsules to be a problem, though I haven't tried the cream. For some people that apparently works better, since there's no possibility that anything in the gut will impede the LDN's absorbtion. The capsule form works very well for me. n >>> Also, my son is looking very washed out and I am very concerned about > his iron level. He was determined anemic last fall, iron count was I > believe at 9 even though he had been taking iron. He was given an iron > infusion which helped him get to a count of 11, still shy of what they > say is acceptable. I am at a loss what to do for him right now. He is > still very tired. The GP who prescribed the LDN for him also ordered > some blood work and I am expecting the results to be poor in this > regard. What to do?>>>> He also does not have much of an appetite since the fever last > week...kind of looks like he is wasting away and I'm worried about him > returning to the bad state he was in last year at this time. I was > hoping he would be feeling better after 3 months into SCD.>>>> Feeling kind of unsettled about all of this...>>>> Eileen>> Mother of 19 yo son>> UC> Re: very tired (was LDN 3mg. vs 4.5)>>  >>>>> Inside the wrist or elbow.  >>>>>>>> >>>>>>> Thanks so much Mara. I am seeing my pharmacist tomorrow and will talk to > her about the transdermal cream. Is there any place in particular where > it should be applied?>>> Eileen>>-- Now available. A fine gift for cat lovers:Confessions of a Cataholic: My Life With the 10 Cats Who Caused My Addictionby n Van Tilwww.wordpowerpublishing.com ; signed copies; free shipping in U.S., reduced shipping elsewhere