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05-25-2013, 09:34 AM   #1
Job
 
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LDN overseas?

Hi there, i've been readin up on most of these recent posts - good job! I learned about LDN on the LDN Yahoo group. I didn't want 2 wait or deal with an arrogant Dr, so I heard about United Pharmacies, based out of Hong Kong, I think. They sell the 50mg pills that you dissolve in water 2 measure out the daily doses. Any1 heard of this company?
05-25-2013, 11:20 AM   #2
Jmrogers4
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Sorry I have not heard of this. It may just be me but I would be worried about getting an accurate dose and I'm just skeptical of places like that and what you are actually going to get.
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Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

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currently none due to liver issues
05-25-2013, 11:34 AM   #3
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Seconded. It sounds kind of sketchy to me, and I think that a big part of what makes LDN effective is the proper compounding. I don't have much experience with the liquid/do-it-yourself approach, but yeah -- you might want to go with a more reputable source, just so you know that you're actually getting naltrexone and not something else.
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Hi, I'm Jesse!

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Lialda (4.8g)
fluoxetine (40mg)
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Previous meds:
Dexilant (too pricey!), Xifaxan (short course), budesonide (tapered off), Pentasa (had to switch in January 2016), omeprazole

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multivitamin
2000IU vitamin D-3

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Mild Crohn's in terminal ileum, February 2012
5cm of narrowing w/ no signs of active inflammation, May 2014
05-25-2013, 02:44 PM   #4
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My question to Job would be...is this your only source for the Naltrexone? If so, I'd say go for it. There are many that are happy with the results that they have gotten from mixing up their own liquid supply. I do know of other pharmacies that sell Naltrexone/Revia. I have been lucky all these years to be able to have it compounded for me but if I had to, I would certainly consider the liquid option. Here are a few other sources for the 50 mg tabs.


Buy Naltrexone/Revia online here
www.4nrx.com
www.alldaychemist.com

Good luck to you...
05-29-2013, 07:38 PM   #5
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Thanks 4 weighin in. I didn't mean 2 deceive any1, but i've been on the foreign LDN. I didnt want any1 2 jump 2 conclusions & say, "it's crap from China, that's why".

I was hopin 2 get a reply from sum1 that got it from United Pharmacies - good or bad. So if that's u, then please post your experiences with it.
05-30-2013, 11:29 AM   #6
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Hi Job...so you've been mixing up the liquid from the tabs? How long and what are your results? Just wondering where you got the info on just how to mix it up.
06-01-2013, 09:26 AM   #7
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I'll quickly tell u how I got 2 this point. I've had mod-severe crohns since the mid 90s. I've been on all the drugs, except Humira. They did a good job at controlling the symptoms, but did not stop the damage, resulting in 3 surgeries. In desperation, I've tried homeopathy & naturopathy. Both failed miserably.

In Oct 2010, I tried the Spec Carb Diet. I noticed a quick improvement. I was able 2 ditch my sulfa pills by Dec. I was doing pretty well for 1 ˝ yrs drug-free, then the symptoms slowly started returning. Last Nov, I stumbled on a Yahoo crohns group that talked about LDN. Thru a conversation, a lady offered 2 send me 2 of those overseas pills.

She says she measures out so many mililiters of water 2 dissolve it, then uses a dropper 2 take it. I didnt have that, so I dissolved it in 12 tablespoons of water, figuring 50mg / 12 = 4.16mg. I started that 2nd week of Dec. I later turned 2 my prednisone, as my symptoms were getting pretty bad.

I took my dose @10pm, as instructed by that lady. I was experiencing bad tummy bloating & restlessness. I tossed & turned for an hr or so each nite, but didnt have any vivid dreams as mentioned by others. I started taking the dose earlier, between 8-9pm, then eating a snack, which helped the bloating. But my symptoms worsened, & after 2 weeks, I made the decision 2 stop LDN. I was pretty messed up & didnt recover till mid Jan.

During that time, I ordered LDN thru United Pharmacies. Since it's overseas, u dont need a Rx. I got it in Jan, & figured I'd give it another try, so I started back in mid Feb when my symptoms got under control. The Yahoo group posted 2 start @ a lower dose if u cant handle the 4.5mg. So I calculated a 2mg dose. That seemed 2 b OK, & I gradually increased it to 3.5mg, which some recommended. However, I didnt notice any benefits from being on LDN, except that I did put on nearly 10lbs while still on my lower-calorie diet.

Also, during May, my symptoms started getting worse again, & last week I stopped taking LDN. So it looks like 1 of 2 facts: either this overseas LDN is phony, or LDN just doesn't work 4 me. What a huge bummer, as living with crohns sucks. It has nearly ruined my life, & I was hoping LDN would give me the opp 2 get back 2 resuming some sort of normal life. Kev's posts really got me optimistic, but now I am left hopeless again.
06-01-2013, 10:28 AM   #8
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Job, I know this sounds kind of trite, but don't lose hope. Like you said, there is a chance that what you got was either not good LDN, or perhaps it wasn't mixed properly (what you did sounded right to me, but I wouldn't trust myself to compound my own LDN, personally).

Not sure if you're averse to attempting to get your hands on some legit LDN that has been compounded by a reputable pharmacy, and/or if you are averse to trying Humira, but I wouldn't write off either option. The main goal is to get yourself feeling better, so consider all treatment options. Best of luck and keep us posted.
06-01-2013, 10:32 AM   #9
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Hey Job....don't throw in the towel yet. I just came across a pretty good youtube video showing just how to mix up the liquid LDN and also there are a few other places to purchase the Naltrexone. Maybe give it another shot?

http://www.youtube.com/watch?v=bOekLFIvR7I

Where to buy the 50mg tablets
Alldaychemist.com
Riverpharmacy.com

So many are having such great results, I would hate for you to miss out only because perhaps as you said the naltrexone was not up to standards or you were just not mixing it up right? Who knows...watch the video and make that determination. Pm me your e-mail address and I will check my list of "LDN friendly docs" to see if there isn't a doctor prescribing it near you. It might be the best solution, to have it compounded but I must say that many are using the liquid and love the idea that you can adjust the dosage at will. Good luck to you. Let's put our heads together and figure this out...{{{hugs}}}
06-01-2013, 11:07 PM   #10
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Job...

I wish I could help.. but, if I may suggest... Your assumption that LDN doesn't/wouldn't work for you is based on the assumption that either source was real LDN, and the formula was correct. I'm not saying drop whatever it is you're doing and stick it out. No, my suggestion would be to put LDN on the back burner.. shelve the idea for now.. get things under control.. do what you got to do... And, if you are ever able to source a legitimate, bona fide 14 week supply of LDN... give it another go. If it hasn't done its thing by.. week 12, 14 at the latest... then, yeah, unfortunately.. you fall into that minority for whom it doesn't work. But, if it does work... then as long as you can get your hands on a good supply.. you should get your life back with no crazy side effects to worry about. Like I said, no eurekas.. but, I don't think the LDN jury actually came in in your particular case. I think you attempted it with questionable materials, okay? All the best..
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06-06-2013, 09:21 PM   #11
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Thanks Jacqui, Jesse, Joyce & Kev. I have a little bit of an update. My last dose of overseas LDN was on May 25th. I wasnt in dire straits, but it took a week 2 recover. Im still kinda bloated, & dont have much an appetite. But no bathroom issues, which we all appreciate.

I think u r all right, i need 2 get my hands on sum legit LDN & give it 1 more try. Im gunna ask my PCP if she knows any gastro Drs that wood b willin 2 Rx it. Man, i wood luv 2 eat sum McDs fries agin.
06-06-2013, 09:32 PM   #12
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Every once in a while might be OK, but if you start feeling better, don't go overboard on the Mickey D's, buddy.

You probably already know this, but keep in mind that it takes a bit for LDN to really make a difference. From my personal experience, I don't want to say "kick in" -- it's more of a gradual improvement over time, with a few bumps here and there. Sometimes it seems almost too gradual, like nothing is changing. However, I think there's definitely a difference between how I feel now versus how I felt before starting LDN, now that I take a look back.

Keep us posted on how you do!! Best of luck with the docs!
07-16-2013, 03:14 PM   #13
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Hi all, didn't have much 2 update, but I did see a gastro Dr, cuz I was runnin out of meds. I have been usin them sparingly ovr the past 3 yrs.

He asked me about my history, then 1st wanted to set me up with Humira. I told him how SCD made a huge diff, & how my symptoms r usually mild. I also discussed LDN. He said he's not into trials, but that he would consider it. What can I give him 2 convince him 2 give it a try?

PS: I get 2 have another colonoscopy!!! Normally, I refuse these, but I am curious 2 find out how bad the damage is. I'll b out, but mayb they can send me a video clip? Sounds morbid, but I'm sure we'd all like 2 know what's goin on in there
07-16-2013, 03:20 PM   #14
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A recent investigation showed half (literally half, 50%) of the online imported drugs from China are fake. They're placebos, especially the steroids...take that as you wish.
07-16-2013, 07:10 PM   #15
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Hi Job...go to www.goodshape.net On the front page you will see something that says printable summary for doctor. That might help if you print this. If you go to the main LDN site at ldninfo.org you will find some things to print regarding some studies that were conducted with LDN and Crohn's.
08-29-2013, 11:01 AM   #16
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I got LDN !!! My Dr here actually listened to me, reviewed the printouts I gave to him & decided to give it a try. Wow!!!

I just took my 1st dose last nite. I tossed & turned for a couple hrs tho. It is 4.5mg capsules. Got it from a compounding pharmacy for $60. That seems high?

He said my colonoscopy showed a bunch of scarring around the resection area. He says it's not good, but not horrible. I also had a small bowel follow-thru that looked good. Altho I have been slowly forced to eat less & less over the past several months, & I'm down to 160 now which is about 7-8 lbs loss. He put me on Entocort last month.

I have been goin nuts on the SCD, & can't help but eat something "illegal" every day. When I do, it's a 50/50 chance I'm gunna have mild problems. Not too bad, but I actually get nauseous if I force myself to eat the same ol bland food meal after meal. Hopefully this LDN works out, as I need something to turn things around.
08-29-2013, 11:10 AM   #17
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Job, glad to hear it!! How many pills did you get for $60?

LDN may help you, but be sure to give it time. I know you want to turn things around sooner rather than later, but keep in mind that the progress of LDN tends to be slow for many people (myself included). Keep us posted!!!
08-29-2013, 11:31 AM   #18
Jmrogers4
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^^^ Yeah that. Keep us updated. Good luck. We pay about $40 for a 30 day supply from local pharmacy.
08-29-2013, 07:04 PM   #19
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I was paying $86. (CDN) for 90 pills at my old pharmacy. I just placed an order with a new pharmacy... only $72 (CDN) for 90 pills. The next step.. talk my GI into changing the order from 90 pill batches to 100. That should eliminate the stale pill (leftovers) issue.
10-02-2013, 11:01 PM   #20
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OK, it's been bout 5 weeks now. I haven't noticed much of a diff. I really think the Entocort is keepin me in check. Altho the Rx was 3mg, 3x a day, I started off w 2/day. Now I'm trying 1 in the morn, & 1 old sulfa in the afternoon. I missed yesterday's dose, & got some med cramps this morn after a half banana & boiled egg - yeeeshhhh, this crohns is a %*#@!!! So I'm hopin this LDN just ain't kicked in yet.

So I now stick 2 SCD about 2/3 of the time. I'm still frustrated w it - does it work, or does it just help? Well, maybe some evidence: I ate at an Italian restaurant 2 weeks ago. Got the Chicken Alfredo, it was delish, but within an hr, I was tore up! & I only ate 1/2 of it. Maybe it was the bread dipped in olive oil? Well, I ate the leftovers the next day (just the Alfredo), & sure enuff.....the D train fired up. So if someone can figure this out, please let me know. Until then, no more Alfredo.
10-03-2013, 11:52 AM   #21
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Where are you getting your LDN Job??
10-08-2013, 09:27 PM   #22
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I get my LDN from an apothecary shop. They compound it - 4.5mg.

I'm at the half-way point now. After I eat, sometimes I'm OK, sometimes I have mild symptoms, sometimes I get sick, either on the toilet or in bed, feelin like crap. What a letdown this will be if it doesn't kick in. I'll be out of options
10-09-2013, 06:16 AM   #23
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HI Job, before you give up I would say to give another compounder a try. Over 10 years ago when I started on the LDN I gave it about 3 months and did not feel it was working for me. I was on the, then recommended dose of 3 mg. Someone suggested to me to up my dose to 4.5mg and/or switch compounders so that is when I upped the dose and decided to go with Skip's Pharmacy. I love that Skip has been involved with the whole LDN movement for years and knows what he is doing. He also buys the Naltrexone in bulk and keeps the price down because of that. It seemed to do the trick for me.
This is certainly worth a try before you give it up. So easy to just fax the prescription to them and have it mailed right to your mailbox.
10-31-2013, 10:25 AM   #24
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Got my Rx trans to Skips, & started takin Tues nite. Much cheaper! Only about $26/mo, & mailed right 2 me.

Into week 9 now, & I’m doin ok, but still havin the usual mild problems. Weaned down to 1 3mg of Entocort, but I also take Cholestipol to keep the BMs solid. Wonder what would happen if I stopped that? Also, I pop an iron pill evry now & then, & it seems like it upsets my BMs a little. What's that all about?

Anyway, that’s the plan. In another couple weeks, I’ll stop the Entocort & replace with 1 Sulfa per day. So if the LDN is workin, I shouldn’t have much problems. I’ve got a 2mo supply of LDN, so if it ain’t workin by then……ugh, I hate to think about that.
11-21-2013, 04:11 PM   #25
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A couple weeks ago, I replaced the 3mg Entocort w the weaker sulfa. Welp, symptoms got a little worse. & After layin in bed, sick & not feelin like gettin up, I reluctantly started back up w the Entocort.

So my 12 week trial is up, & it looks like I'm not 1 of the lucky 1s. On Sun, I picked up some pot roast & ate just the meat. Prob 4oz. That wiped me out for a couple hrs. What a b!+ch this crohns is !!!!!

I got another month's worth of LDN left, so I'll continue takin it. But if you don't hear a reply from me, then it means it didn't make a diff. In the meantime, I gotta give up & find a Dr to get on the conventional meds to postpone yet another horrible surgery
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