LDN, fillers, and SCD

[Callie]

My 17 yo daughter was diagnosed with Crohn's 6 days ago. We are reeling, as you can imagine. We are trying to do as much research as we can before jumping into scary drugs. She is doing SCD (not easily). We also just got permission from her doctor to start LDN, so we are looking for the right pharmacy. We live in New England, and there are some pharmacies locally that I know do compounding, but
1. do folks here recommend going with one of the "approved" LDN pharmacies?
2. if we have a choice, which filler is most compatible with SCD?? I'm assuming lactose and sucrose are NOT, but are acidophilus and cellulose ok? Is one better? Or is it better to do liquid?
3. which of the approved pharmacies has the best price?

Thanks all of you for your invaluable help!!!!!!

 

[Alanschachter]

Callie, sorry to hear about your daughters diagnosis but it seems like you are giving her the best chance to do well with the path you've chosen.

We use Skips Pharmacy in Boca www.skipspharmacy.com Skip is a great advocate, his prices are among the best out there, and he uses avicel as the filler.

www.crohnsdad.com

 

[Kev]

I've heard scuttlebut/rumours/anecdotal info that the liquid loses potency faster, maybe there are some folks here who can confirm/refute that. As for fillers, I've done both the acidophilus and cellulose routes with no noticeable distinction. I doubt there is sufficient levels of acidophilus in them to have any appreciable benefit if your daughter also has high levels of candida. I'd never heard of candida until my 1st visit to the lowdosenaltrexone website, where it was mentioned as possibly interfering with LDN working successfully. I can tell you that I've been on LDn for over 4 years, and it has worked wonders for me. God bless...

 

[crushingcrohns]

My 17 yo daughter was diagnosed with Crohn's 6 days ago. We are reeling, as you can imagine. We are trying to do as much research as we can before jumping into scary drugs. She is doing SCD (not easily). We also just got permission from her doctor to start LDN, so we are looking for the right pharmacy. We live in New England, and there are some pharmacies locally that I know do compounding, but
1. do folks here recommend going with one of the "approved" LDN pharmacies?
2. if we have a choice, which filler is most compatible with SCD?? I'm assuming lactose and sucrose are NOT, but are acidophilus and cellulose ok? Is one better? Or is it better to do liquid?
3. which of the approved pharmacies has the best price?

Thanks all of you for your invaluable help!!!!!!

That's great news :rosette1:that your daughter's Dr. will prescribe LDN!!! That really is a blessing because like myself and many people. Most doctor will refuse to write a script for LDN and some have never even heard of it.
Scary drugs, as in biologics? Because LDN is probably one of the safest drugs out there. 1st of all it's been used for many many years ... like over 20 years and there has not been any serious or alarming side effects. People have reported 2 side effects 1)fatigue 2) vivid dreams .... I can live with that. So, if you were worried about the LDN and it's safety, it's one of the safest drugs... That's why I am on it. Other drugs will kill me because I'm extremely senstive to medications.

Fillers and pharmacies. I bet this forum below would know.

Try this forum dedicated to just LDN. http://ldn.proboards.com/index.cgi

 

[crushingcrohns]

I've heard scuttlebut/rumours/anecdotal info that the liquid loses potency faster, maybe there are some folks here who can confirm/refute that. As for fillers, I've done both the acidophilus and cellulose routes with no noticeable distinction. I doubt there is sufficient levels of acidophilus in them to have any appreciable benefit if your daughter also has high levels of candida. I'd never heard of candida until my 1st visit to the lowdosenaltrexone website, where it was mentioned as possibly interfering with LDN working successfully. I can tell you that I've been on LDn for over 4 years, and it has worked wonders for me. God bless...

The pharmacist said that the liquid formula of LDN only lasts 14 days & it must be kept cold and in a dark colored glass tincture or bottle.
I just found out that my lDN pills are filled with lactose... I'm allergic to lactose!! Ughh

 

[crushingcrohns]

Callie, sorry to hear about your daughters diagnosis but it seems like you are giving her the best chance to do well with the path you've chosen.

We use Skips Pharmacy in Boca www.skipspharmacy.com Skip is a great advocate, his prices are among the best out there, and he uses avicel as the filler.

www.crohnsdad.com

ALAN!!! :banana:HAHAHHA Hi, It's Amy.... Nice to see you here. I just found out that my ldn has lactose as a filler. UGH I'm annoyed because I have no good pills and i'm flared and DO NOT want anything like lactose in my body.
Oh, btw I wrote that woman.. Funny response. Hope you are good . Have you checked out this place http://ldn.proboards.com/index.cgi? You know a lot and could def be of help there as well.

 

[Alanschachter]

Amy, Go thru Skips in Boca for LDN. Thanks for writing the CCFA for me. They told me they would re-consider in a few months. We'll see. And I'll check out that other site.

Feel better. Do some bone broth while you wait for the new LDN!

 

[crushingcrohns]

Amy, Go thru Skips in Boca for LDN. Thanks for writing the CCFA for me. They told me they would re-consider in a few months. We'll see. And I'll check out that other site.

Feel better. Do some bone broth while you wait for the new LDN!

MMMMMM YUMMMMM Bone Marrow Brothuke_r:
The CHicken Soup is a go fo sho lol .... but the broth is very difficult for me to get it down. It's the texture of the marrow I think. I did by Dr. Campbell's recipe book and she has a bone broth with lots of herbs and veggies. I'd have to do something to the broth to make it take somewhat good

HAHA Boca Raton.... where old people go to die. Ugh.My gram used to have a condo in Boca. Well, she still does but hasn't been there in years. I probably know where Skips is; I used to drive my grandma everywhere... Terrible drivers there

:ybiggrin:

 

[Callie]

We used Skips. She started Valentine's Day. She is doing well physically. She's also on SCD. Remarkable change in past 2 weeks though she hates the diet :/

 

[Alanschachter]

My 18 year old hates the diet too. While I would prefer it if she were more dedicated, the addition of LDN, getting her vitamin D levels up above 70, and adding boswellia/5Loxin, and Curcumin/BCM-95 has allowed her some diet flexibility. She's been able to do well adding back in white rice, and potato.

 

[zdub]

My 18 year old hates the diet too. While I would prefer it if she were more dedicated, the addition of LDN, getting her vitamin D levels up above 70, and adding boswellia/5Loxin, and Curcumin/BCM-95 has allowed her some diet flexibility. She's been able to do well adding back in white rice, and potato.

She should get together with my 18-year old who simply has no tolerance for MOST healthy foods! Been on LDN for 6 weeks, combined with Alpha Lipoic Acid. (Also 2000 D, C, multi, probiotics (Saccharomyces Boulardii, the only bacteria easily available that I have found positive research on for Crohn's), Lauridicin. The curcumin is temporarily on hold because of the large capsule.) She's been having a very hard time lately; lots of pain & nausea, etc. But we really have no idea if the LDN has been helping since it is possible that the inflammation is down but a stricture is causing the latest problems (she had one resection due to a stricture and this is sort of how she felt before that surgery). We need to get a baseline upper gi/small bowel series but she was not able to drink the goop on two separate occasions.

Our philosophy is to try the lowest risk stuff first. Those heavy duty biologics scare us.

 

[Callie]

The only thing my daughter had to drink before her upper endoscopy and colonoscopy was miralax in clear liquids, which did not taste bad. She also had 2 CT scans: the first they tried to get her to drink contrast goop and she felt sick and could only get down half of it in the allotted time; the second time she agreed to have the contrast pumped in rectally which she feared, but which turned out to be a lot easier. Zdub it does sound like your daughter needs to be checked out :/ . I hope she's ok. We jut got back from a week away - our first time traveling on the diet, and my daughter did pretty well. I think she's realizing that it's helping. Of course she started LDN only 2 weeks after starting SCD, but 3 days into LDN there seemed to be a big positive change. The heavy duty biologics scare us, too.

 

[Alanschachter]

I would love it if our kids could talk, however my daughter is very private about Crohn's. She has no interest in sharing.

 

[Callie]

omg Alan what is it with these teenagers?? My daughter is the same way. It makes me crazy. I've had 3 parents with kids doing well on SCD offer their kids to email/facebook her, and she keeps saying, "not now." I can't imagine going through something like this and NOT wanting to talk to other people who have gone or are going through it (obviously, that's why I'm HERE), but she is being very closed about it. I guess I can see not wanting to talk about it to the whole world, but I would think it would be a relief to talk to other people with Crohn's, especially kids her age. She has met a few adults with Crohn's but there are no kids in her world that have it that we know of. Thankfully, I guess I've repressed what it was like to be 17, but now I sure wish I could get into her brain sometimes :/

 

[zdub]

Alan - yeah, my daughter is also pretty closed about it. However I asked her and she would be willing to email or internet chat. So keep it in mind if your daughter becomes open to the idea and can use a friend in pain.

Callie - colonoscopies are ok in terms of the prep. But the upper GI/small bowel series is another matter because of thick contrast liquid that needs to be ingested rather quickly. She is physically unable to do this (two separate occasions both resulted in vomiting). Insurance will cover capsule endoscopy only if the results of the upper GI - which she can't do - so warrants. Only other option is to use a nasal tube for delivery of the contrast liquid and we may have to go that route. It is critical that we get this done: my daughter was released from the hospital with lots of pain; the doc doing the colonoscopy couldn't account for the extent of the pain and recommended a psych eval. Idiot. That was what they told me when I was a kid (yeah my daughter got my Crohn's genes). NONE of the docs in the hospital said to have the GI series. After release, we took her to a (supposedly non-cut-happy) surgeon specializing in Crohn's who was shocked that the GI series wasn't done yet. Indeed it did show a fibrous stricture which had to be removed.

So it is possible that the LDN & other stuff we are using is having some benefit on the inflammation, but we really need to get this intense pain under control which may be due to another stricture that has developed before the therapy.

The hardest thing so far is trying to find a compassionate, non-dismissive gastroenterologist that will work WITH us to see if an alternative therapy is effective or not...

 

[KTA]

LDN fillers

Hello everyone. My son is 30 and has always been very private about his crohns. It drives me crazy. He has been sick since he was 15 and it hasn't gotten any better over the years!

I wanted folks opinions here on the forum. Kev, if you are out there...would love to hear from you. My son who has been on LDN for eight months now and is doing great...or should I say....feeling great. The problem is, and I have mentioned this before on other threads, is he is still losing weight! I am so upset about this because at this point, he is starting to look bad to me. He lost his appetite in the beginning when starting LDN and lost about 12 pounds. Now...he is down about 20 pounds. He doesn't live with me any longer so I really can't keep tabs on him. He mentioned to me yesterday that he wasn't sure if it was the LDN because sometimes he feels sick to his stomach and doesn't want to eat. Plus, his bowel movements seem to be more often. But, he does not eat right at ALL! And of course does not listen to my advice. He is lactose intolerant and it occurred to me that maybe his LDN is using Lactose as a filler. I get his LDN from Imrat in NY and told them he can't have lactose filler and they told me they would use avicel. But how can we know for sure? Also, do you think he may be feeling this way and losing weight, etc. if the LDN is in fact using Lactose as a filler? He has a new GF and I thought that was also contibuting to his Not eating. You know how love can be sometimes. lol! I was thinking of ordering from a different pharmacy to see if there would be a difference? Weight lost does not seem to be one of the side effects of this drug so I am completely stumped! He was in to see his GI doc in early Febuary and he told him then that his blood work etc. was fine, but try not to loose any more weight. But he has! I have not seen him this thin since he was diagnosed 15 years ago! His routine colonoscopy is not until June.

 

[Kev]

I don't know what I can do to be of help (but since when has that ever stopped me from opening my big mouth). I don't know what he is eating, and apparently you don't either. If he is super-sensitive to lactose, like me, then IF there is lactose as a filler in his LDN, that might cause him grief. (I discovered the lactose in my brand name, expensive vitamins did a major number on me.. so it doesn't take much). Another thing is the age of the LDN. My advice is to avoid using pills compounded more than 90 days past. I argued this with the local pharmacies/pharmacists, who claimed they had a shelf life of 1 year. But, after my discussions with them, they revised it down to 6 months. As for myself, I don't use pills past the 3 month mark. My experience (and I am not an expert in the field of pharmacology, but I am betting my life on my pills, and this is what I have experienced 1st hand over 4 years) is that compounded LDN loses its umpth after 90 days, and at approx. $1 a pill, it simply is not worth the gamble (to me personally, OK)

Other than these little snippets, I don't know what to tell you. A 30 year old male isn't a child you can order around (if one could, I'd order mine to write me more often), and it may be a case that he isn't eating regularly, resting, eating the right foods, taking multi vitamins, supplements, etcx., etc.. Maybe try to find a lactose free version of Ensure or similar supplements, drop it off, and hope for the best. You know, in the indoctrination classes before I became a licensed parent, they never told me that, once the child grows up, the worrying continues. What's up with that? There ought to be a return policy.

 

[Tesscorm]

You know, in the indoctrination classes before I became a licensed parent, they never told me that, once the child grows up, the worrying continues. What's up with that? There ought to be a return policy.

:lol: With two teens, I'm starting to find this out... ugghh!:angry-banghead:

 

[Kev]

The beauty of it is... what goes around, comes around. My oldest is a papa now himself. I just nod and smile, and sit back and wait till my grandson becomes a teenager too. LOL

 

[KTA]

Being a parent is a life long sentence! LOL!

Thanks Kev for the response and I hope you don't mind me signaling you out. When I read your story and journey with Crohns Disease, I thought I was reading about my son. You progression with the disease sounds a lot like his and that is why I respect your opinion. On top of that, you seem to be a lot more experienced with LDN and us newbies can use all the information and help we can get.

I'm glad you mentioned your experience with your vitamins and the lactose. It leads me to believe that there could be a very strong possibility that the LDN has lactose as a filler. My son said that it only happens every so often...... that he feels sick and has loss of appetite after taking the LDN. Its almost like SOME of the pills in his batch may have a lactose filler. On top of feeling sick, he has to use the bathroom more. He thinks if he doesn't eat, he won't have to go, which I hope is the reason for dropping so much weight. I called the pharmacy again to ask about their fillers and they told me they use Avicel, Lactose and I think Acidophilus as a filler. I've told them NO lactose filler but whose to say there aren't a few pills with the lactose since it only happens every so often. As far as his diet, all he needed to hear from his Gastro doc was there is no real diet to follow with this disease. I have given him so much paperwork regarding SCD, but he said it would be too hard for him to follow. I think his problem is just being too lazy.

I plan on ordering his next batch of pills from a different pharmacy to see if there is any difference. His script is for 90 pills but I may ask if they can fill 30 pills at a time just so there is a smaller chance of the pills not being potent enough.

Thanks again, Kev. I know I don't have to thank you, but i want you to know I appreciate your input. Good luck to you and everyone else on this site. Katie

 

[Kev]

Couple of things.. First off, doctors ARE divided about whether diet plays a part in Crohns disease. My take on it is... so the jury is out, why not take the 'safe' course and eat those foods that will be less taxing on a system. Even healthy people can have issues with certain foods... so why should a person with a compromised digestive system take chances. Hi protein, low fat, low fibre, low residue, lactose free certainly can't hurt. It's a compromise, but maybe it's a compromise your son might listen to. The way I see it, he is gambling that his doctor is right about there being no connection between crohns and diet; but if the doctor is wrong, it is your son who has to pay for it.
I understand why your son passed on the SCD. I looked at it (before I found LDN) but I realized 2 things. 1st, I'd never be able to stick to it. 2nd, living like that wasn't how I wanted to live... Hmm, that may sound arrogant. What I mean is... if eating just what the SCD allowed meant I could avoid Crohns, it meant that Crohns was controlling how I lived, and I wasn't prepared to give in that easily. Mind you, if LDN hadn't come along to rescue me, I might have had to reconsider that decision. But, it never came to that.

OK, the one thing I find odd is ... OK, he feels sick and has a loss of appetite after taking LDN. At night? From what I've garnered, LDN does its thing in about 4 hours then dissipates. Taken at bedtime, it shouldn't (the Naltrexone) be affecting his appetite. I've never had ANY side effects except for the dreams. Not that it can't happen. I'd go to the Naltrexone website and check into side effects reported (at their larger doses) to see if any appetite/nausea issues have been reported (not the lowdosenaltrexone site)

Final thing... but ordering smaller quantities of pills will not assure you are getting ONLY fresh pills. Here's the thing (unless each pill is made by hand, and almost no one does it that way.. except maybe in school). Compounded pills are made in batches of 100 (the way the machine is built). So, you get 90 pills made fresh, what happens to the remaining 10? Put aside till the next script is filled... and so on, and so on. Only thing you can do is get them in batches of 100, and insist that they all be from the same batch. Only pharmacies equipped with a 'hood' system can compound Naltrexone pills from powder. And, how fresh is their batch of bulk Naltrexone powder? The more pills a pharmacy compounds, the fresher (speculation) their Naltrexone should be. But, if it was stale Naltrexone, his condition would deteriorate. And what you describe sounds a lot more like poor eating habits, poor nutrition choices, AND maybe using his dr's statement about nutrition and Crohns as an escape clause so he doesn't have to watch what he eats. If that is the case, I don't think you are going to convince him otherwise. He may have to learn that lesson (that doctors aren't always right) for himself the hard way, OK