Success with low dose naltrexone for Autoimmune disorders

@bandruid7 I really hear your frustration and your, too, @jlw. I just wish more doctors would go into theses non-lucrative fields! But everyone seems to want to be surgeons. There is so much unknown in autoimmune diseases and everyone is just left hanging . I’m wondering if either of your doctors have suggested an avenue of research to you or where they think you might go next?

No one has mentioned research etc. Luckily my primary has taken me seriously from day one, but he is a rural
General MD, so he is limited. I will be contacting my Mayo Neuro again, I just knew I needed to give steroids a longer chance. Again. I won’t stop pushing because once I no longer went to Springfield Illinois because of no answers, and then no answers from the specialists in St Louis, my only hope was Mayo. Now here I am:(

I have read a lot about it and I would definitely try it if I had problems. I tried to get my son to take it but he wouldn’t. It makes sense that it will help autoimmune diseases because of the way it works. Also, it’s not harmful and is such a small dose!

I am in Remission from Relapsing Polychondritis on May 2021 will be 8 years...I my rheumy had no experience with LDN but in three weeks of taking it I went from barely able to move to dancing with delight. Opioids stopped contolling my pain and when we ran out of meds we had that talk.. I did give up...a friend gave me two more options and unlike the other eight rheumys was open to looking at something not tried before...Wahl's protocol and LDN were those options...I am a foodie and Wahl's didn't seem like something I would stay on so LDN was it...I was given 4.5 mg and for three weeks it was the worst flu but I had been warned that might happen..but after the three weeks I woke up with no pain and it was wonderful...Since then gradually improvements have occurred...my allergies lessened. My skin improved ...my trach has started to heal my breathing is better and off O2 shortly after starting it. I wish it had been started sooner as I wouldn't have as much damage to live with.

Hello @goodfriends, Welcome back to Connect. I see that you last posted in 2011. Thank you so much for coming back to Connect and sharing your experience with low dose naltrexone (LDN). To be in remission for almost 8 years is no minor accomplishment. Your experience with LDN is an encouraging one that can offer others with Relapsing Polychondritis some hope and possible answers in their search for something to help.

@nibor63 @mcwilliamssr @rpwarriorlady @monikamouse @ethellee97 and @polytina have posted in the Relapsing Polychondritis discussion here: https://connect.mayoclinic.org/discussion/relapsing-polychondritis/ and I'm sure will be interested in your story.

I also tried the Wahls Protocol diet for a few months and found it somewhat difficult and I only stayed on it a few months. It did really start my journey on eating healthier and focusing on nutrition vs junk and processed foods. You mentioned you made the decision between the Wahls Protocol diet and LDN and went with the LDN as an option to help your Relapsing Polychondritis. Did you make any other diet or lifestyle changes that helped you?

i too have been to more doctors than you can count on both hands, currently at Mayo for over a year and still no real answers, i am about to go the same route you have taken. just tired of this

This question was posted originally at the beginning of this year and I didn't notice it. I have taken LDN for years for Lyme and Hashimoto's. I don't really know how much it has helped. My Hashi is out of control and the Lyme is also still active. However, the Lyme may have been affected to some extent. I used to have extremely bad issues that would put me in bed as much as 10 days with the Lyme. No eating or drinking and the most terrible headache imaginable which could not be relieved by legal meds. The dr. would not give me a med that is legal and effective because of the possibility of addiction but that is another story. I have felt the Lyme coming on but not actually putting me down and if the LDN has been the cause of this I am going to continue taking it. I also had Covid for about 5 days and did not have a lot of the typical symptoms. Afterwards I tested my antibodies and they were high. LDN? I don't know.

I just started LDN for chronic pain, I have prickling, shocking, sore muscles, pins and needle, and numbness that started in my left foot and has moved up my body. The pain seems to be causing muscle wasting. LDN has helped with my pain a lot but I haven't been on it long enough to know how well it will help me. I started at 1.5mg a month ago and I just went up to 2mg. I know it has helped my mood tremendously. I also take 50mg of Lyrica 2xdaily but I feel the LDN is help better than the Lyrica. I wish you well and thanks for bring this conversation up.

FYI : there are Facebook forums regarding LDN; many with Sjögren’s and other autoimmune issues successfully take it. If you’d like to hear experiences from other LDN users you can ask to join these groups..

Thank you Helennicola!