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Who's tried LDN, and what are your results? PART II

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Posted 10/12/2011 3:44 AM (GMT 0)
^^ that's interesting. There are a few on here who swear by the transdermal version. It may very well depend on how the TD LDN is made.

I've seen better results with oral, personally. I did TD for 2 months.
Posted 10/12/2011 1:49 PM (GMT 0)
I have no experience with LDN yet but I joined the LDNandIBD yahoo group and I was able to find this;


Sent: Monday, October 10, 2011 5:52 AM
Subject: [BTVC-SCD] LDN Working - Michelle

Just been reading up on emails and saw this post. Michele the reason why you may be finding LDN isn’t working for you is that Dr Zagon has recently conducted a study about the transdermal cream and it doesn’t enter the body systematically. This means it only has an effect on the area you rub it in, hence it is now highly regarded for wound healing. Before giving up on LDN, I would as Mara suggests perhaps trying the pills at 3mg. Here’s the email from Dr Zagon:-

Quite simply, naltrexone does not have the physicochemical properties to penetrate deeply into the skin and to enter the systemic circulation. And the systemic circulation would be the source for the entire body. In fact, in our paper in press with Experimental Biology and Medicine we cite some of these papers - and we ourselves found that naltrexone in a cream form
("transdermal") does not alter cells in the skin distant to where we have made our application. So the bottom line: at this time I am not aware of a transdermal cream of NTX that enters the body - much less with the pharmacokinetics of LDN (see below).
Now, many folks are out in the world looking to develop an enhancer for naltrexone penetration - the market for drug abuse is huge.
My final remark about this is that even if one does find the magic enhancer, and naltrexone does enter the systemic circulation, then a very specific amount of naltrexone in this enhancer/transdermal delivery system needs to be found that mimics LDN - blocks receptors for 4-6 hours and have a remaining 18-20 hours for the upregulated receptors/peptides to interact and cause the good things needed. Anything less than that can be catastrophic in the sense that some biological systems would be exacerbated by the failure of having opioid control mechanisms.
Dr. Zagon

Hope this helps.
Posted 10/13/2011 12:39 AM (GMT 0)
Peace&Harmony,

I don't believe that's true about the Transdermal LDN not working and circulating.

However, I do hope the oral LDN will help you.

Which type are you taking, with which filler, dosage, etc...?

Good Luck peace and harmony!

Posted 10/13/2011 5:47 AM (GMT 0)
InSoFla can you remind me of what your diet is again? If I recall correctly it's basically just protein.
Posted 10/13/2011 5:49 AM (GMT 0)
In defense of the TD version, when I took it I got mad vivid dreams for the first few days, which is a sign the LDN is having at least some effect. That means the TD version did at least deliver some LDN to my system, regardless of what Dr Zagon says. I'd like to hear Dr McCandless chime in on this; she's a real champion of the TD version.
Posted 10/13/2011 12:34 PM (GMT 0)
badslinke,

Yes, it's true - initially I was on proteins only in remission. However I wasn't quite happy with the strict diet. I believe the LDN did put me in remission, not enough to eat normally.

So, I did the camel milk and the L-Arginine Ethyl Ester - and since then, what a change! I believe that the camel milk "reset" my gut, as I am now able to eat pretty much what I want: veggies, salads, fruits, a variety of nuts, carbs, even pizza in addition to the protein, without any problems. Although it's great to be able to indulge in an occasional slice of pizza, I don't do it often.

So, to answer your question my diet now consists of: proteins, veggies, salads, fruits, a variety of nuts, and a rare occasional carb.

I'm doing great, feel good, energy is through the roof.

BTW, now that I am doing so well and my gut is healed, I am going to be switching from Transdermal LDN to liquid LDN.

Posted 10/13/2011 4:14 PM (GMT 0)
I alternated between TD and Oral for a while.  about 30 minutes of taking it I would be so sleepy regarless if it was the TD or oral.  That only proves it gives the same side effects. For LDN to work it need to be released right away. 

Dr Zagon did a study....it's not just an opinion.

Liquid LDN maybe a good option too for us if we can't take the oral or we could open the capusal onto our tongue and wash down with water if our digestive track is running at high speed.

I'm interested to find out how the liquid LDN workd for InSoFla.

PLease keep us posted!

Posted 10/13/2011 4:41 PM (GMT 0)

InSoFla said...
badslinke,
Yes, it's true - initially I was on proteins only in remission. However I wasn't quite happy with the strict diet. I believe the LDN did put me in remission, not enough to eat normally.
So, I did the camel milk and the L-Arginine Ethyl Ester - and since then, what a change! I believe that the camel milk "reset" my gut, as I am now able to eat pretty much what I want: veggies, salads, fruits, a variety of nuts, carbs, even pizza in addition to the protein, without any problems. Although it's great to be able to indulge in an occasional slice of pizza, I don't do it often.

So, to answer your question my diet now consists of: proteins, veggies, salads, fruits, a variety of nuts, and a rare occasional carb.
I'm doing great, feel good, energy is through the roof.

BTW, now that I am doing so well and my gut is healed, I am going to be switching from Transdermal LDN to liquid LDN.

That is really great to hear. My LDN hasn't arrived yet and I'm so anxious to start it! Looks like everyone else including Jray and hope are doing really well so they are not here.
Posted 10/13/2011 4:49 PM (GMT 0)
JaneC, I hope you have great results but you have to remember, there are a handful of people who are having goodluck with LDN but there are also many people who tried it and went on to have surgery or have had to opt for stronger medications such as remicade. It's the same as every other medication for treating this illness, it helps some but not all. Please don't think everyone is having good results because I've seen many come and go who tried LDN with no result and some who have even had negative side effects from the drug, come and go over the years. I also notice almost everyone on LDN is on a restricted diet, supplements and some are on other medications as well. It is hard to say which has provided the most relief from UC symptoms.
Posted 10/13/2011 5:31 PM (GMT 0)
NotSoSicklyGirl,

Thx. You are right about this in every aspect. We don't know which medication, supplement or diet is helping the most.
My friend is a member of this forum and suggested that this forum is great with advices. He has been on LDN before and he's off after finding out that something else is working better for him.
I'm not experienced and going through a flare right now. Because I'm willing to try anything else innocuous before trying hard medications, this thread gave me hope.
My doctor started me on 20mg of prednisone and I don't feel anything different yet.

Are you on any diet? Based on your signature, I don't think you are. what works the best for you?
Have you tried LDN?
Posted 10/13/2011 7:12 PM (GMT 0)
Jane, I haven't tried LDN but I would love to. It would be great if it works as a stand-alone solution for you but it seems like many use LDN along with diet and other supplements, maybe the combo works better than LDN alone. I don't know... I have been on a lot of different 5ASAs, both oral and rectal, I've tried some antibiotics, prednisone and I am now on 6mp. The strange part is, all these medications and I still don't know which is keeping me flare free. This illness is so unpredictible. Hopefully yours is mild and you don't require the strong medications.

Have you tried 5ASAs oral/rectal? I actually am beginning to feel that prednisone is the worst evil of all the drugs. My knees hurt every day and I've been off of it for quite a while...

What kind of symptos are you dealing with? 40 mg seems to be the usual starting dose for pred. It's not so bad if you can get on and off in a few months but many have trouble tapering.

Posted 10/13/2011 9:59 PM (GMT 0)
Notsosicklygirl,

In the past, I was on prednisone 5 times at 40mg oral or intravenous steroids. But I never went over 2 months on prednisone usage each time.
Prednisone makes me cranky and it definitely causes me achy joints too!
Inflammation in my gut can't really be helped by the rectal meds because it's primarily in the ileum, cecum, and ascending colon.

I have slight bleeding and :(
I'm going less than 5 times but releasing a lot of the stuff by not absorbing the food that I take in.
I'm on Asacol and Imuran. I used to be on Remicade but had to go off because it was causing SEVERE joint pains each time after the infusion.

I'm trying to prevent this light flare from going into a full flare mode.
Posted 10/13/2011 10:26 PM (GMT 0)
It sounds pretty mild right now but I know what you m ean about wanting to stop it in its tracks. Have you tried the rectal meds? I know they won't help inflammation that is higher up but if there is any toward the rectum, it would helpful. Have you had a colonoscopy lately to see what is going on?

What dose of imuran are you on? Are you in the theraputic range? I am on 6mp and I've never been able to get into the theraputic range without having it cause my liver enzymes to increase... I haven't tried remicade. Has your GI ever mentioned Humira? Maybe you would do better on that? Are you taking a probiotic?

Maybe the LDN is just what you need.

Do you have a special diet? Sorry I didn't answer before, I don't eat a special diet but I am a picky eater, I've always been. I only eat lean meats and I don't eat meat often. I don't eat processed foods often or artifical sweetners if i can avoid them. I try to eat fresh ingredients and organic if I can, humanely raised meats a couple times a week.
Posted 10/15/2011 1:42 AM (GMT 0)
Hello all:

Well, I would like to chime and give my update.  Been on LDN for 2 1/2 months now.  In total remission, unless I over eat bad stuff that have always bothered me ie:  too many raisins, too much popcorn, too many sweets and I know that regular milk does bother as well, yet yogurt is ok.  What I eat is pretty darn healthy, but I can eat normal foods.  tongue Soft texture whole wheat bread, peanut butter.   I can eat pasta, vegies, salads, and meats...but I try not to eat too much red meat (because it's not the best for anyone anyway).  I eat salmon at least 2 x a week.  My stools are normal, go 1x daily now unless I eat wrong...above list.  However, no blood, no urgency...!  LDN does work, give it time, listen to your body.  I take oral with hypoallergenic filler, I do have transdermal cream for a back-up for next year...when my insurance starts over with the deductable. 

My weight has stablized; I feel great, my color in my face is much better, have much more energy.

A side note:  I did take the flu shot, because I work in a hospital...and it did mess me up on/off for about 1 week, (messes with your immune system, dah) and then all back to normal now. 

So whoever wants to try LDN give it a try.  My dreams at times are vivid, but not scary or really bad.  I know it is a dream.  I first month I was very tired, but my body was probably busy healing...so that does take a lot of energy.  But now feel great.  I have to thank this forum...bless all of you!

 

Posted 10/15/2011 2:37 AM (GMT 0)
Just wanted to chime in as well. Oral LDN really seems to be pulling through for me now. I'm doing much better these days and seem to be on a steady path to remission. I was going back and forth before on the TD version. My stools are almost always formed now, and down to 3-4 beyond the standard morning. I went through the airport today without even having to be afraid of being stuck in the security line or on the plane as it lands (times I've always been classically terrified of having an attack).

I guess it could also just as well be the psyllium seed powder that I've been consistently doing for the past several months, but I'm not sure that alone would take me this far. I feel like the LDN has to have helped.

Also, despite what my sig says, I haven't been taking VSL for the past several months, so that's not part of the equation.

InSoFla I wonder how much impact that camel milk had on you?! Especially if the TD LDN never really did that much??
Posted 10/15/2011 12:28 PM (GMT 0)
Hopeful4uc,

Glad to hear that you're doing so well, and are able to have such a diverse diet - that's great!

Keep up the great work, and thanks for letting us know how you're doing.


 

Posted 10/15/2011 12:42 PM (GMT 0)
badslinke,

Sounds like the LDN + psyllium powder helped you get your symptoms under control, I'm glad.


InSoFla I wonder how much impact that camel milk had on you?! Especially if the TD LDN never really did that much??

There is no question that the  TD LDN did put me in remission - for me, it stopped the bleeding (and alot of it!) completely. But somehow for me, it didn't enable me to go outside of the strict diet of mostly proteins, which I wasn't real happy with. I had the vivid dreams too. Anyway, I wanted to have the ability to eat more normally, that's the reason I was looking at other things, like the camel milk. And I believe it did "reset" my gut enough so that I could expand my diet to include all foods (though I still don't do too many grains). From the research I did, it showed that camel milk has the ability to get rid of food intolerances, and food allergies. Anyway, I am feeling good and don't regret my TD LDN use at all.

BTW, for the 3 days of being on no LDN at all, as I was waiting to get my liquid LDN, I remained in remission with all UC symptoms, but did get sick.

I wasn't getting my immune system booster (LDN), and I developed laryngitis, with a bad  cough, and feeling flu-ish. Still feeling sick even though I started yesterday on liquid LDN at the 1/2 dosage of 4.5mg. Skip's advised me to take 1/2 dosage for the first few days to make sure it doesn't aggravate the UC, which it hasn't. I guess I now have to wait for the LDN to build up my immunity again.

To me, this is just added evidence how powerful LDN is to the immune system and keeping it healthy, beyond UC remission, and I fully intend to keep on it.

Posted 10/15/2011 2:51 PM (GMT 0)
Notsosicklygirl,

Sorry for the late response. I am on 125mg of Imuran and called the doctor to mail me the script for Canasa after listening to your recommendations.
The probiotic that I take is Ultimate Flora critical care, I couldn't tolerate Culturelle. It caused belching and bloating but this one seems to be tolerable.
Haven't had a scope since last year of July, my doctor is not pushing me at all to get one yet.

I have been avoiding all processed food too, eating very bland. Majorly animal protein sources.
Thank you for asking.

Insofla,

One shoe size does not fit all and TD LDN helped you out the most despite what Dr. Zagon said. I'm so glad that you're almost eating like others non UCers. I wish I can follow your diet without causing me abdominal pain, D and bleeding.

I received my LDN today in the morning! God bless the USPS postal man who gave it to me.
Now, only time will tell. Starting with lower dosage tonight.
Posted 10/15/2011 6:49 PM (GMT 0)

InSoFla said...
BTW, for the 3 days of being on no LDN at all, as I was waiting to get my liquid LDN, I remained in remission with all UC symptoms, but did get sick.

I wasn't getting my immune system booster (LDN), and I developed laryngitis, with a bad cough, and feeling flu-ish. Still feeling sick even though I started yesterday on liquid LDN at the 1/2 dosage of 4.5mg. Skip's advised me to take 1/2 dosage for the first few days to make sure it doesn't aggravate the UC, which it hasn't. I guess I now have to wait for the LDN to build up my immunity again.

To me, this is just added evidence how powerful LDN is to the immune system and keeping it healthy, beyond UC remission, and I fully intend to keep on it.

Now that's interesting. Honestly I'm hoping to get off LDN one day. Did anybody else get sick around you or was it just you? I went for a while without LDN between the TD and oral versions and had no sicknesses at all. ??
Posted 10/16/2011 1:38 PM (GMT 0)
badslinke,

No one else got sick, just me.

I'm still sick btw. I'm still on the half dosage of 4.5mg liquid LDN, I'll be moving up to 4.5mg tonight.

But I haven't had any vivid dreams, unlike when I was on transdermal LDN. If the lack of vivid dreaming continues, I'm going to have to call Skip's to find out if the liquid  LDN is working - maybe I'm not absorbing it, I don't know???

What's your diet been like badslinke?

Posted 10/16/2011 3:56 PM (GMT 0)
Insofla- Why did you switch to the liquid?  I was wondering if I should switch to the capsules again and see what happens?  I thought maybe since I was feeling good the capsules wouldn't bother me this time.   

 

Posted 10/16/2011 10:10 PM (GMT 0)
Boxermom2,

I developed an allergy to the Emu oil in the transdermal cream. The allergy manifested itself in the form of a rash at the site on my forearms, where I put on the LDN cream. It was raw, scaly, itchy, and red - almost like eczema patches. Anyway, I stopped using the cream, the rash is healing, and I was without LDN for 3 days until I was able to get the liquid LDN. Since I had absorption problems prior to with oral LDN, I figured the liquid LDN might be better. We shall see ....

There are others who have developed this "allergy" and have had their transdermal creams made with safflower oil instead. And I am exploring that possibility.

How have you been doing? What's your diet like? How have you been feeling?

Are you on any LDN now?

Posted 10/16/2011 10:13 PM (GMT 0)
I'm still on the cream. No allergy to it. No special diet. Can eat all my usual junk food no problem. I feel really good. Would say in remission.
Posted 10/16/2011 10:17 PM (GMT 0)
Boxermom2,

That's so great Box!

So, if you are in remission with the LDN cream, why would you want to switch?

Posted 10/16/2011 10:27 PM (GMT 0)
Just thought the pills would be better. That post about it not working made me question it. Something is working for me though. Feeling good so I can't complain.
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