To all chronies...Why have you not tried LDN ( Low dose Naltrexone)?

EMom said...

belleenstein said...
EMOM said: "I completely understand wanting to be cautious, but are you saying LDN is an opioid like LSD?"

LSD is not an opiod.

Sorry, that is simply what I inferred from GladBag's post. As I said, it's possible I misunderstood. I see Heroine is an opioid...must be confusing the two.

the only reason I had for using LSD as an example was to make the the point that some drugs can affect us, even in very tiny amounts....you are all right, LSD is definitely not an opioid. But my reason for the comparison was that LDN is a low dose form of the drug, but can probably still be harmful in some ways. Who knows though, maybe its just about getting the right amount of the drug to the right tissues, and they may be able to figure out how to do that?

Nonetheless, it seems that none of the medicines currently being used, represent even anything close to a "cure", but rather a temporary fix to a permanent problem, and no one can quite agree on what exactly causes the immune system overactivity to begin with. I like the hookwork and/or tsyrabi approach, but I also want to see more studies first.

I just hope everyday, that I keep my large intestine long enough for them to find something that will work, so one day, maybe I can reverse this darn ileostomy. As much as I fel tremendously better since my ileostomy, I want it gone. I just want to be back to how I was when I was 15, you know?

OK....enough whining from me today. :0)

I think it is fair to say that no drug is free of risk. I am for doing what it takes to get you better. Take care ya'll!

WOW Great discussion.

The way I look at it is Taking LDN until the trial results come out in a few months wont kill me.....

Remicade, tysabri, etc we all know they can have some SERIOUS side effects. Naltrexone has been around for decades and there has not been any FDA warnings on serious side effects. I feel comfortable taking a fraction of the reccomended dose.

Someone asked about medications Im on with the LDN. Im on 5mg of PRED and weaning, zoloft (anxiety), LDN, and dlpa supplement which is supposed to boost the effects of the LDN.


Ive had 4 bowel movements in the past 4 days and I cant recgonize any of the food I ate in the bowel.!!

MMMNAVY said...
LDN is not usually prescribed to pregnant women. It can cross the barrier.

I just found this. Apparently LDN is used to treat infertility and is safe during pregnancy. Who knew? News to me!!!

If you read on the second page of this document, right hand column, it says it is safe in dosages of up to 50 mgs for both mother and baby. LDN is typically a 4.5 mg dosage.

It stands to reason, though, that a drug which has been used for 30 years (20 in low dose) would have data on safety during pregnancy...

http://www.fertilitycare.net/documents/LDNInfo_000.pdf

Well-said, MMMNavy...


I know you're very excited about LDN, EMom, but try not to get carried away... as MMMNavy said... That's just a flier from a fertility clinic... one fertility clinic... Not very reliable...


There's still a lot of research that needs to be done... I mean... If something is working for someone, then by all means, they should continue taking it and everything... But what's right for one person might not be right for another.... and then, there are some people who just don't want to take a risk in something that isn't very well understood yet... and they don't want to end up feeling worse or having more problems...


Out of curiosity... Do you have Crohn's yourself, EMom, or is it just your son?


Your son is obviously very lucky to have you as a mother, regardless... You sound like you're very supportive and looking out for things that will help keep your son as healthy as he possibly can be.


Please take note, though, that not everyone is as lucky as your son. Some people are completely on their own... and this disease can be very scary and frustrating... and all of the treatment options available... both the conventional and the alternative... can be just as scary... confusing... overwhelming... and frustrating. This can become even more complicated if these people are low-income... Most alternative treatments don't get covered by insurance... so that means paying out of one's own pocket.... and it becomes very disheartening when people spend their hard-earned (and it is especially hard-earned when you feel like complete crap and force yourself to work because you have to support yourself) money that could've gone towards, say... the phone bill... or clothes... hoping to feel better... only to have what they spent their money on not only not work... but also find out that it could be harmful to their health...


:(...

I thought I saw some clinical studies being done that show it could be helpful... But like I said, there's still a lot they don't know... and that needs to be researched...


I'm with you... I'm not willing to give up the pain relief option, either... My pain gets so bad... :(... *I was doing a bit better.... I was only taking a pain pill when I was having pains at night... and in the morning... but now I'm having pain constantly again and taking something for pain every four hours just like I was doing... Think it might have been my fault... I bought a little bit of junk food (don't lecture me too much, I bought a lot of healthy snack food, too, including lots of veggies)... nothing I knew would be really hard on my stomach... just some sweet, unhealthy, but not known pain-causing food... Maybe I overdid it on eating that stuff, though because I've been feeling just awful... :(... No more of it for me... at least not until I'm feeling completely better. :(... This really sucks, man...*

Quesadilla you might go to the Crohns & Colitis Foundation to find information about different medications available for Crohns.  As well as a lot of general info about Crohns itself.  Welcome to Healingwell by the way.

I've red a lot, too. It's really interesting. And I've just found out that you are not allowed to use it with Humira, Remicade or even Prednisone. And if you need pain meds you have to avoid all containing narcotics.

Yes, lucey, you're right. LDN seems to stimulate the immune system. It's doing so by blocking the endorphine production a few hours during the night, LDN is therefore best to be taken at night, later than 10. p.m. to block the endorphines. When the body's getting signals that "there is no endorphines" it kind of panics and produces much more.

People with Crohn's disease (and other auto immune diseases) has for some reason too low endorphine production. When we're getting enough by using LDN, the immune system starts to function again and it's then doing it's job: attacking "Others" instead of "Self".

Prednisone:Even using 10 mg or less (while doing a slow tapering off) of Prednisone is ok.

Roni:
I think LDN works different in all. Some gets pretty well and pain free within days, some needs weeks and others needs months. The pain seems to get reduced already the first night when the endorphine level increases.

LDN is tricking the body by stopping the endorphine production when you take your pill after 10 pm. The body's registering this, and when the peak of new endorphine production starts between 2 - 4 in the morning, it produces much more than before. This will immediate lower our pain sensation and in the long run balance our immune system.

I am about to start using LDN, my GP has written a rx! I can't wait!

And I've also read that LDN is no cure, but it may bring you into remission. Some side effects: vivid dreams (mostly first week), insomnia (first week/some weeks, use melatonin)

To help LDN working even better: use the antiox. DLPA, is to be ordered online.

Post Edited (teaspoon) : 5/28/2008 9:21:01 AM (GMT-6)

Illy said...
What doctor would prescribe LDN? My GI never heard of it.

There are many doctors prescribing it now. One way to find out is to join the LDN group previously mentioned here and they can share those lists. The other is to locate a compounding pharmacy near you and ask them for a list of doctors who are prescribing it. Kind of a round about way, but it works.

We were just at our GI's today. He is very aware of what is going on with LDN, but since he's at a children's hospital, he's currently unable to prescribe it (much more strict protocols for kids). I have no qualms "going it on my own" if need be.... Thankfully, we do not have the need at this time.

It is of great importance to find people online who have some knowledge of ldn if you are thinking of using it. i googled ldn. I thnk its better to get advice from ldn ussers instead of doing some mistakes. A person i talked to recently told me a lot of how to use it.Take it in the nights, find out if you have clostrid or yeast to get rid of that to let LDN work even better.

Post Edited By Moderator (MMMNAVY) : 5/29/2008 6:39:34 AM (GMT-6)

Very well said Kitt. Thanks for your good advice as always.

I am like Zanne, I need the narcotic pain meds I take. My bone and joint pain override the tummy at this point.