LDN help needed please

bevfromwa · Post by **bevfromwa** » Wed Apr 08, 2015 5:34 pm

after my primary turned me down, sent me to GI who also turned me down, then saw a neurologist on another matter, I asked him about it, think he was afraid of being sued, turned me down as well Then I decided to be a little proactive. I called the one compounding pharmacy in this area, and asked if they'd share a list of doctors they'd compounded LDN for, explained that I was having trouble getting a prescription. Surprisingly, the technician read me a list of several doctors they'd compounded LDN for. And I found one doctor who was actually in the clinic I go to. So I called and explained that my primary wasn't familiar with LDN, but that the pharmacy had given me her name as someone they'd filled prescriptions for. I asked them to run it by her so see if that was ok, but no, they just made the appointment, said it would be ok.

My appointment was to be this Friday--today I get a call that the doctor "isn't comfortable" doing this and wanted to cancel the appointment. I tried to explain what I'd been through, they were unhappy with the pharmacy and called to ask (list? I got no stinking list) so I explained that it was information from the LDN file and that I hadn't wanted to get anyone in trouble. They said go back to my primary and explain this. I said I wondered how many circles I needed to make while chasing my tail? Bottom line, the on line chart I accessed said they'd canceled that appointment an hour before they even called me.

The research I did mentioned LDN was helpful for Chrohn's, IBS, Colitis, Ulcerative Colitis, and Multiple Sclerosis. I've read the posts from many of our members who've been helped. It appears that it will help with inflammation. Next step is alldaychemist and doing it myself. I know there is info on line on how to do this.

Am I nuts to pursue this? My daughter wonders if there's a reason why these doctors won't get involved, but my research says little or no side effects, lots of positives.

Thanks for any help anyone can provide.

Beverly

brandy · Post by **brandy** » Wed Apr 08, 2015 8:10 pm

Hi Bev,

I just wanted to give you encouragement to stay on your hunt/search. My experience isn't with LDN but with bioidenticals. I had a really tough time finding anyone in my area who would talk with me re: bioidenticals. My gyn pcp said she did not handle. I had to do Prempro as that is what all of the research was on (per her comments.) After a year of suffering on Prempro I saw her again and told her I needed a list of providers who handled bioidenticals in the area as I was really suffering then I gave her a list of all of the side effects I was having. Magically now she was able to get me on bioidenticals. She kept my list of side effects and stamped it with an old fashioned rubber stamp. I'm not sure 100% what the stamp said but I think it said something like non-responsive. I was pretty angry as I had really suffered the prior year.

I guess I just wanted to give you encouragement to not give up.

Brandy

Post by **tex** » Wed Apr 08, 2015 9:02 pm

Beverly wrote:My daughter wonders if there's a reason why these doctors won't get involved, but my research says little or no side effects, lots of positives.

IMO the problem that you are dealing with is that physicians who are members of a clinic, or other workgroup, and in some cases doctors from the same cities, or even regions, are loathe to step on the toes of their colleagues. They don't want to be accused of stealing patients from other doctors who might know them. Call it professional ethics, or fraternalism, or whatever, they know that after a patient is gone, they will still need to work with and respect each other, and that's a reasonable point.

But yes, it usually sucks if you are the patient whose current doctors turn down a request, because opposition can seem united in that community.

Tex

Gabes-Apg · Post by **Gabes-Apg** » Wed Apr 08, 2015 9:17 pm

Bev,
hopefully some of the LDN Gals will chime in
I know some of them have had similar issues and had to get it external to their PCP.

hang in there, small hiccups happen in MC world...

JLH · Post by **JLH** » Thu Apr 09, 2015 7:37 am

I wrote a message last night but my iPad froze. I had a terrible time getting LDN from doctors and then from my local compounding pharmacy. All my food intolerances were to blame and the pharmacist made assumptions that were not true. She also used my sister's former allergy against me! I think the doctors were afraid of their insurance companies.

If you want the name of the phone consult doctor I used, message me. It cost $200 for a six month prescription which doesn't include the cost of the LDN itself (Skip's Pharmacy).

I started LDN last July. I had no benefit from it except possibly helping clear up some rashes on my chest and back. I did get one on my thigh while I was taking it. I discontinued it last month so I could take Imodium. I plan to get tested for Candida to see if that is what is stopping me from having success with LDN.

Other PP had more success with improved mood and energy and less pain than with MC itself.

My GI wasn't comfortable either...........

Leah · Post by **Leah** » Thu Apr 09, 2015 9:59 am

Hi Bev. I hear your pain. I also had a hard time, but I kept sending research papers and info on LDN to my gastro and he finally relented to a 1.5mg. dose. I feel great now. Is it because of the LDN? I don't know. Some day, I will stop taking it and see what happens.
Good luck
leah