Any Tips - Talking to GI about LDN

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PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 7/17/2008 8:34 AM (GMT -6)   
I had a falling out with my main GI doc last  summer and as a result I've been unmedicated since 7/07 and not seen anyone there in the past year.
 
I've been reading the posts on LDN, have done research on it and even got clearance with my kidney specialist stating it's ok for the kidneys. I want to give it a try but I know my GI tends to only go with main stream proven treatments.  I was able to talk them into getting me an appointment next Friday (7/25) with the NP.  Anyone have any suggestions on how I can deliberate my way into trying LDN?  I want to try the most gentle medications I can to get this into full remission, I'm not one to take the "broadsword" approach to problems, I want the littlest medication possible.
 
I tend to be worried about how I'm saying things to the point I end up not saying anything at all and getting no where.  Any and all approach suggestions welcome.
Kim
~ Mom of Nathaniel aka "Peanut" 18m (6/08)~ Married ~ 36
"The List "
- UC dx 8/2000 - Culturelle 1x day Prenatal Vitamin (Currently not flaring but not what I would call in remission either.)
- CKD Stage 3 (Chronic Kidney Disease) - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferolicit IV on hold (6 weeks free of IV, check in August)
- Allergies - Zyrtec 10mg 


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 7/17/2008 8:52 AM (GMT -6)   

I usually try to give my doctor about a month's notice, but I when I want to try something that I need him to agree to, I print out or photocopy the relevant information and send it along with a letter stating that I'd like to discuss this with him when we next meet.  It works pretty well.

If I think of something spur of the moment, I write it on a notecard and refer to my notes.  This also helps.

Good luck.


bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 7/17/2008 9:05 AM (GMT -6)   
Did you ever consider going to a new GI? Your health is too important. Anyhow, just be yourself, be prepared with what you want to say or show your doc. If he is a jerk about it, tell him how you feel and find a new doc if you can. By the way, I do not know what LDN is. But bringing in info. on it is a good idea, maybe even dropping off a copy before the appointment too. Good luck. Bellski
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis,
Currently: mild symptoms / flare ?
Medications:  Asacol 400mg X 6, Canasa X 2 
Vitamins:  Calcium 600 + D X 2, Centrum, Citrucel caplets, Probiotics
High fiber diet
"I thank God that  I found this website!"
 


PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 7/17/2008 9:09 AM (GMT -6)   
I have the Wikipedia wiki information on LDN and from http://www.lowdosenaltrexone.org both bookmarked. There's a ton of information there I'm not sure what's the best to print. I don't want to provide too much because they would probably tend not to read it but I don't want to go in there with nothing either.

I called and let them know I had an appointment with the main GI (the one that I had the falling out with) for October 22 and they said they didn't think I needed him personally for this matter that I could see the NP that it was either next week or September 15th. So I didn't get to give them the earlier notice I would have prefered to give.
Kim
~ Mom of Nathaniel aka "Peanut" 18m (6/08)~ Married ~ 36
"The List "
- UC dx 8/2000 - Culturelle 1x day Prenatal Vitamin (Currently not flaring but not what I would call in remission either.)
- CKD Stage 3 (Chronic Kidney Disease) - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferolicit IV on hold (6 weeks free of IV, check in August)
- Allergies - Zyrtec 10mg 


JerryGarcia
Regular Member


Date Joined Feb 2008
Total Posts : 68
   Posted 7/17/2008 9:21 AM (GMT -6)   
I'm on LDN but have gone down the self prescription route. If you want to persuade your GI I'd suggest bringing in a printout of study results and provide him with links to all the relevant sites. Let him mull it over and with any luck you will get a script. It is a very cheap drug so should you choose to purchase it without your GI's blessing (not that I'm suggesting you do this) it is entirely possible.

By the way, I've been taking LDN for 2 weeks now and am loving it.
DX with UC Jan 07
Currently taking Colazide (allergic to Asacol and Pentasa) 2 a day
Also taking VSL3 X3 a day
Just started LDN 4.5mg


PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 7/17/2008 9:42 AM (GMT -6)   
Jerry - I didn't think you could get it over the counter????? How??????

Bellski - I'm hoping that he was having a bad day the last time he saw me. I have gotten great and attentive service there from 2001 right up to last summer, that was the first time ever I had any bad experience there. . . it was just REALLY bad so now I'm a little nervous about going back there. That's why I haven't even attempted it until now when I feel better, all the other health concerns are at a good place and I have the energy/ will power to swallow my fears and go back. I'm almost sure that it's not going to be as bad as last time but I have to try one time just to see. If it's bad again I will pick up my records and get my PCP to send me to a new GI.

So the case studies are what they will want, not the information on the news and where articles were printed? I've left the name of the drug with them, their office is a 60-75 minute drive so "dropping off" isn't practical, I can try faxing tho, I just don't want to send them a book.
Kim
~ Mom of Nathaniel aka "Peanut" 18m (6/08)~ Married ~ 36
"The List "
- UC dx 8/2000 - Culturelle 1x day Prenatal Vitamin (Currently not flaring but not what I would call in remission either.)
- CKD Stage 3 (Chronic Kidney Disease) - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferolicit IV on hold (6 weeks free of IV, check in August)
- Allergies - Zyrtec 10mg 


PumpFast
Regular Member


Date Joined Jun 2006
Total Posts : 140
   Posted 7/17/2008 10:56 AM (GMT -6)   
PeanutMom said...
I had a falling out with my main GI doc last  summer and as a result I've been unmedicated since 7/07 and not seen anyone there in the past year.
 
I've been reading the posts on LDN, have done research on it and even got clearance with my kidney specialist stating it's ok for the kidneys. I want to give it a try but I know my GI tends to only go with main stream proven treatments.  I was able to talk them into getting me an appointment next Friday (7/25) with the NP.  Anyone have any suggestions on how I can deliberate my way into trying LDN?  I want to try the most gentle medications I can to get this into full remission, I'm not one to take the "broadsword" approach to problems, I want the littlest medication possible.
 
I tend to be worried about how I'm saying things to the point I end up not saying anything at all and getting no where.  Any and all approach suggestions welcome.

I had to get my script from an alternative medicine doctor who was already using LDN in his practice.
 
A lot of doctors will not write a script for something that is not standard / or they are not familar with. Many times they are too busy to read material on new treatments.
 
PF
6MP, Asacol, Rowasa
VSL#3, Florastor (Saccharomyces boulardii), Mutaflor(E. Coli Nissle 1917)
Psyllium Seed Powder, Turmeric Extract, Fish Oil, SeaCure
Multivitamin, Folic Acid, Vitamin C, Alpha Lipoic Acid, L-Carnitine, L-Taurine
Ulcerin I and Ulcerin II (ayurveda herbal medication for UC)
Low Dose Naltrexone 4mg


PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 7/17/2008 12:27 PM (GMT -6)   
how do you locate a doctor in your area that's using it? I don't even know where to begin on finding an alternative medicine doc.
Kim
~ Mom of Nathaniel aka "Peanut" 18m (6/08)~ Married ~ 36
"The List "
- UC dx 8/2000 - Culturelle 1x day Prenatal Vitamin (Currently not flaring but not what I would call in remission either.)
- CKD Stage 3 (Chronic Kidney Disease) - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferolicit IV on hold (6 weeks free of IV, check in August)
- Allergies - Zyrtec 10mg 


PumpFast
Regular Member


Date Joined Jun 2006
Total Posts : 140
   Posted 7/17/2008 12:29 PM (GMT -6)   
PeanutMom said...
how do you locate a doctor in your area that's using it? I don't even know where to begin on finding an alternative medicine doc.

Brenda, the moderator of the LDN board sent me a list of Dr.'s in my area
 
The forum is at
 
 
PF
6MP, Asacol, Rowasa
VSL#3, Florastor (Saccharomyces boulardii), Mutaflor(E. Coli Nissle 1917)
Psyllium Seed Powder, Turmeric Extract, Fish Oil, SeaCure
Multivitamin, Folic Acid, Vitamin C, Alpha Lipoic Acid, L-Carnitine, L-Taurine
Ulcerin I and Ulcerin II (ayurveda herbal medication for UC)
Low Dose Naltrexone 4mg


JerryGarcia
Regular Member


Date Joined Feb 2008
Total Posts : 68
   Posted 7/17/2008 5:13 PM (GMT -6)   
Well not "over the counter" so to speak, I had to order from an online pharmacy (alldaychemist) but I really did my research before hand to ensure they had a good reputation. Everything went fine and rather than take pills I dissolve the 50g tablet in 50ml of water and use a measuring syringe to get the correct dose.

You might want to start with 4.5mg and if you get any side effects (I didn't) drop down to 1.5mg and work your way back up.
DX with UC Jan 07
Currently taking Colazide (allergic to Asacol and Pentasa) 2 a day
Also taking VSL3 X3 a day
Just started LDN 4.5mg


PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 7/18/2008 6:19 AM (GMT -6)   
Pump - thanks, I have a list now, most of them in my area are MS Specific docs, not sure if they'd see and treat me for UC but I'l hanging on to the list just in case.

Jerry - I'll keep that in mind. I've got the appointment next week so I'm going to keep it and see how that goes. I'm not seeing the specific person I had trouble with last time so I may actually get somewhere. I'll be sure to let you know how that turns out.
Kim
~ Mom of Nathaniel aka "Peanut" 18m (6/08)~ Married ~ 36
"The List "
- UC dx 8/2000 - Culturelle 1x day Prenatal Vitamin (Currently not flaring but not what I would call in remission either.)
- CKD Stage 3 (Chronic Kidney Disease) - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferolicit IV on hold (6 weeks free of IV, check in August)
- Allergies - Zyrtec 10mg 


PumpFast
Regular Member


Date Joined Jun 2006
Total Posts : 140
   Posted 7/18/2008 10:05 AM (GMT -6)   
PeanutMom said...
Pump - thanks, I have a list now, most of them in my area are MS Specific docs, not sure if they'd see and treat me for UC but I'l hanging on to the list just in case.

Jerry - I'll keep that in mind. I've got the appointment next week so I'm going to keep it and see how that goes. I'm not seeing the specific person I had trouble with last time so I may actually get somewhere. I'll be sure to let you know how that turns out.

Kim,
 
The list of Dr.'s that I received contained a lot of MS doctors, etc. You may want to avoid these and go for one that is a general alternative medicine doctor(if there are any in your area).  I had to drive from Tampa to Miami to get my LDN script. The doctor was pretty thorough and ran some other test on me in his office and prescribe some herbal meds as well. I went from a moderate flare to remission in under two months.
 
PF
6MP, Asacol, Rowasa
VSL#3, Florastor (Saccharomyces boulardii), Mutaflor(E. Coli Nissle 1917)
Psyllium Seed Powder, Turmeric Extract, Fish Oil, SeaCure
Multivitamin, Folic Acid, Vitamin C, Alpha Lipoic Acid, L-Carnitine, L-Taurine
Ulcerin I and Ulcerin II (ayurveda herbal medication for UC)
Low Dose Naltrexone 4mg


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 7/23/2008 9:30 AM (GMT -6)   
Would I have to wait for Remi to "get out" of my body before trying LDN? Has there been any actual studies of UC and LDN?
Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (2nd infusion 06/26/08), 2.4 g Lialda, 1 Forvia, 9 Colazal/day
*exploring the option of surgery
 


PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 7/24/2008 6:40 AM (GMT -6)   
Well I have case studies printed and all the drug information printed I ended up about 150 pages of things printed, highlighted and noted. I know it's probably overkill information but I'm hoping they will see I've done research on this and would be willing to let me give LDN a chance. I have my appointment tomorrow so now I'm starting to get a little nervous about how it's going to go. I'm hoping well, I think I have everything I can get for them.
Kim
~ Mom of Nathaniel aka "Peanut" 18m (6/08)~ Married ~ 36
"The List "
- UC dx 8/2000 - Culturelle 1x day Prenatal Vitamin (Currently not flaring but not what I would call in remission either.)
- CKD Stage 3 (Chronic Kidney Disease) - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferolicit IV on hold (6 weeks free of IV, check in August)
- Allergies - Zyrtec 10mg 


PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 7/25/2008 8:33 AM (GMT -6)   
Today's the day, wish me luck, I really want to give this a try and with all my other medical issues I'm a bit nervous thinking about trying it on my own if they put up a fight today.
Kim
~ Mom of Nathaniel aka "Peanut" 18m (6/08)~ Married ~ 36
"The List "
- UC dx 8/2000 - Culturelle 1x day Prenatal Vitamin (Currently not flaring but not what I would call in remission either.)
- CKD Stage 3 (Chronic Kidney Disease) - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferolicit IV on hold (6 weeks free of IV, check in August)
- Allergies - Zyrtec 10mg 


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 7/25/2008 9:47 AM (GMT -6)   

Good luck.

Seems like a fairly benign drug.  It's too bad you have to load for bear (to talk to a doctor who would likely recommend something with a much worse side-effect profile. . . ).


JerryGarcia
Regular Member


Date Joined Feb 2008
Total Posts : 68
   Posted 7/25/2008 12:49 PM (GMT -6)   
I wouldn't get worked up over it, if he says no then you can always get it from an online pharmacy or go to a doctor who will prescribe it....
DX with UC Jan 07
Currently taking Colazide (allergic to Asacol and Pentasa) 2 a day
Also taking VSL3 X3 a day
Just started LDN 4.5mg


MamaDove
Regular Member


Date Joined Dec 2006
Total Posts : 181
   Posted 7/25/2008 4:56 PM (GMT -6)   
 
PeanutMom...How did you make out?
 
Got my fingers crossed~MamaDove

jpain44
New Member


Date Joined Jul 2008
Total Posts : 6
   Posted 7/25/2008 9:59 PM (GMT -6)   
yeah definitely don't get stressed over it. LDN seems to be something you can order online for under $40 for 90 pills. Thats pretty darn cheap without a script. But you could always do one appt. at an alternative med dr. and get them to write u one. if theres a will theres a way if u want it :). besides who's to tell you what you can or can't do. its your body

bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 7/26/2008 9:58 AM (GMT -6)   
How'd it go, PeanutMom?
Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (3rd infusion 07/08), 2.4 g Lialda, 1 Forvia, 6 Colazal/day
*exploring the option of surgery
 


PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 7/28/2008 7:26 AM (GMT -6)   
Hello sorry so long in the reply my weekend spiraled out of my control from both my family and my husband's. My mother was put on a new med and went to sleep for over 5 hours mid day and we couldn't get her to wake up. . . . .Not 30 minutes into that mess my mother-in-law calls and tells us that she's got a fractured skull in 2 places, a fractured finger, has clear fluid dripping from her nose and blood going down the back of her throat and now we cant reach anyone down there (she's in southern VA we're in North-eastern NY) so stress is high right now! My mother is ok, the new med dose was just a bit too high for her body to handle. My mother-in-law we are still trying to get answers.

Dr visit - The NP thinks that LDN would be great but because she's the NP she can't start a new med without the Dr approval. With all the research I've done she wants to present the question to him with as much information as she can so she wants to move my scope up that I had scheduled for December to August 11. This way she can say "here's the status of where I am and here's what the drug can do lets get her on it and see how it works." She's in support of me trying it so I think I have a shot. She even took down my kidney doc's number so she can get them to fax over their approval so she can hand that to the doc too since the kidney doc thinks LDN would be safe and possibly help keep my kidneys where they are since it was an immuno-deficiency disease that caused the damage to them in the first place.

They also switched me from Culturelle to Align. Since I was having small results with the Culturelle she thinks I'll do even better on the Align.
Kim
~ Mom of Nathaniel aka "Peanut" 18m (6/08)~ Married ~ 36
"The List "
- UC dx 8/2000 - Culturelle 1x day Prenatal Vitamin (Currently not flaring but not what I would call in remission either.)
- CKD Stage 3 (Chronic Kidney Disease) - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferolicit IV on hold (6 weeks free of IV, check in August)
- Allergies - Zyrtec 10mg 

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