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Crohn's Disease Forum » Treatment » Low Dose Naltrexone » Turned Down for LDN x 3 today!


05-20-2013, 06:37 PM   #1
akduck
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Join Date: May 2012
Location: Alaska
Turned Down for LDN x 3 today!

Just an update on my quest for LDN. I dropped off all studies and publications on LDN to my primary care drs. office a couple of weeks ago, and had an appt. today. The primary care said no, the doc who takes care of Crohn's people (they are all internal med specialists) said no, and the Nurse Practitioner, who i saw today said no. But... she gave me some information - she had emailed Dr. Smith and Dr. Zagon on my behalf, and gave me copies of the emails. Dr. Zagon's answer was a little strange -"LDN for Crohn's is very worthwhile. I would try it for a week. Good Luck. Dr. Zagon" I question that he actually wrote this - maybe someone in his office?
Dr. Smith's answer is seemed more promising - she said she is no longer with Penn State, and said that TNI BioTechs, who bought the rights to her research there, will be starting clinical trials, and gave their web site
www.tnibiotech.com
I read through their website, and they don't plan on starting trials until 2014, and then they say they are working with a Chinese pharmaceutical company... that kind of turns me off.... I avoid buying Chinese made stuff, and not sure if I would trust drugs from there....
My primary docs would support me if I got into a trial, thought, so that was encouraging.
I did tell the NP today that I am going to see a couple of other doctors about getting the LDN locally, and if I do get it, I will tell them and want to keep seeing them, and that if my GI didn't want me anymore if I'm on LDN, I am ok with that!
So that's where I am. Calling for more appointments!
05-21-2013, 08:40 AM   #2
JDTM
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I wish you the best of luck. I don't know what to tell you regarding where the medication will be manufactured, and it makes me wonder if custom compounding will still be available if LDN becomes FDA approved. However, I was under the impression that Skip Lenz (from Skip's Pharmacy) was going to have a role in overseeing the compounding process. I get my stuff from Skip's and I trust it, so hopefully his involvement will provide some more reliability, regardless of where the medication is manufactured.
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Hi, I'm Jesse!

Current meds:
Lialda (4.8g)
fluoxetine (40mg)
naltrexone (4.5mg)

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

Supplements:
multivitamin
2000IU vitamin D-3

Diagnosis:
gastritis & duodenal ulcers, August 2011
Mild Crohn's in terminal ileum, February 2012
5cm of narrowing w/ no signs of active inflammation, May 2014
05-21-2013, 10:35 AM   #3
akduck
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Join Date: May 2012
Location: Alaska
Thanks, Jessie. I am hoping to find a doctor who will let me try it sooner than 2014! Also, I live in Alaska, and have tried to get in a couple of trials for other things, but have not been "geographically" qualified, so don't know if I would even be accepted for this. But I am really glad to see that there is more interest in research. It would be great if Skip was involved - I have only read good things about him!
Marlie
05-21-2013, 10:54 AM   #4
Jmrogers4
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Have you tried an osteopath? They are a lot of the times more open to letting patients try it.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
05-23-2013, 12:50 PM   #5
JoyceF
 
Join Date: Jun 2012
Location: Chicago, Illinois

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Hi akduck....I do have 2 docs on my list of "LDN friendly docs" in Alaska. One in Anchorage and 1 in Wasilla. Are you anywhere near either of these? I would be happy to e-mail you that info if you are interested or maybe just private message me. I'm not that familiar with the messaging at this site so I don't want to miss anything from you. First let me know if you'd be interested in either of these doctors info.
05-23-2013, 11:40 PM   #6
akduck
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Join Date: May 2012
Location: Alaska
Joyce I would definitely be interested! I am closer to Anchorage than Wasilla, but I have a friend in Wasilla who would like the info also! I will PM you my email! Thank you so much!

JM, I haven't tried an osteopath... I tried my GI, primary and nurse practitioner, and they all said no. I will wait to see who Joyce gives me, and there is a Dr. here I went to school with... I was thinking of asking him next.

Marlie
05-24-2013, 11:18 AM   #7
JoyceF
 
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Location: Chicago, Illinois

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Ok...just e-mailed you the info on those 2 doctors. I sure do hope that this works out for you but by all means, try whatever resources you have. Any doctor with a prescription pad can prescribe this with no problem.
You might mention to them that even Dr. Mercola had a piece on LDN in one of his newsletters maybe about a year ago. That should go a long way for doctors to consider at least looking into this. Dr. Mercola is well respected for his views on things. Many well known alternative minded docs are coming out in favor of using LDN.
05-24-2013, 12:19 PM   #8
David
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Location: Naples, Florida
Have any of those doctors who turned you down ever prescribed you any form of mesalamine such as Pentasa, Asacol, etc?
05-25-2013, 11:37 AM   #9
akduck
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Join Date: May 2012
Location: Alaska
Joyce - thank you - I got the information!

David - I have never been prescribed anything other than Prednisone, and that was when I had the obstruction and the dr in the hospital put me on that, then the GI prescribed more, and the lower dose for the taper. I was off of it after about 10 weeks, and then had surgery. After my surgery my GI wanted to start me on Cimzia, but I got a staph infection that took 3 months to clear up. During that time I did a lot of research and decided that I would like to try LDN before considering a biologic. Right now I take:
20mg Omeprozole 2 xday - I have GERD
20 mg Simvistatin 1x day
B12 injection every 2 weeks
5000 IU Vit D3 a day
50 billion probiotic 2 x day
81 mg aspirin 1 x day

That's it. My GI never mentioned anything but biologics - he talked Remicade and Cimzia, and he decided Cimzia.
I have been doing very well since my surgery in JUly2012, but the obstruction that caused this journey came on so fast last April, that I feel like a ticking time bomb!
05-25-2013, 08:43 PM   #10
steve55
 
Join Date: Jul 2012
Location: New York
Here's some more options:

1) Do a phone consult with Dr. Borenstein. Cost is $170

Dr. David Borenstein
1841 Broadway #1012 New York, NY 10023
(212) 262-2412

2) Order it from India without a prescription and dilute the pills to 4.5mg yourself.

Youtube video on how to prepare:

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

Websites to order from:

http://www.naltrexonerx.com/
http://www.alldaychemist.com/
05-26-2013, 11:12 AM   #11
akduck
Senior Member
 
Join Date: May 2012
Location: Alaska
Thanks Steve - the phone consult sounds like a possible option.
I'm not comfortable with ordering / mixing my own!
06-11-2013, 05:21 PM   #12
jonathan
 
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Join Date: Jul 2012
Location: Troy, Illinois
Late to the discussion here but very interested in LDN.
David- Would taking Pentasa as a past maintenance medication rule one out of taking LDN?
06-11-2013, 05:50 PM   #13
Jmrogers4
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No Jonathan it would not, my son was on LDN and Pentasa at the same time. I think the point that David was trying to make is that as far as controlling the disease, Pentasa, Asacol etc don't do much they are for surface inflammation and don't seem to do much to get to the root of the problem.
I don't believe having been on any of the current standard medications would preclude you from being able to take LDN.
06-11-2013, 05:58 PM   #14
jonathan
 
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Thank you for your reply Jmrogers4! I am in the process of collecting info for my GI doc. I had an ilealo-cecal resection done almost a year ago and was tampered off of Pentasa in early May. I drastically changed my diet to a gluten free one with an emphasis on juicing but I am very uneasy about being med free. May doctor stated that he would support my medication decisions but said that he did not know very much about LDN during my Jan appt. Hoping to get it prescribed next month when I see him again. I want to combine diet and low toxic (but effective) medication in my Crohn's defense.
06-11-2013, 06:07 PM   #15
JDTM
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Hi Jonathan -- I'm currently taking both simultaneously. I think my doctor appreciated the fact that I was willing to stay on a more "tried-and-true" medication like Pentasa, and as a result she was more willing to go along with my desire to try LDN.
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