Success with low dose naltrexone for Autoimmune disorders

@gillysmom Thank you for the suggestion. I have never heard of that before. I’m not sure why I have had such a difficult time with fighting off infections my whole life. I can remember as a kid it taking a really long time even getting rid of a cold once I got it. I guess I’ve had a lousy immune system my whole life. When I was 32, I got an infection which I thought was a lingering sinus infection. It was questionably diagnosed as Mono, and quickly developed into Guillian Barré’ Syndrome. That was a 2 year recovery from being paralyzed, and within a year after that I was diagnosed with reactivated Epstein Barre, and Hypothyroidism. I have struggled with EBV ever since. Seems that my immune system just can’t keep it in remission. I’m going to read up on that suggestion of Gamma Globulin. I was very excited about the LDN suggestion, but it’s hard to tell at this point how much it has helped. As I said, I’m only on 2 mg so far. I figured it was worth a try though. Thanks for your reply.

One more thought about your hypothyroidsm. Your doc needs to exclude Hashmotos, which is an autoimmune cause for thyroiditis. Knowing what is happening within your immune system may help with understanding how one disease impacts the others even when there are no specific treatments available. Two other resources are "Stuff that Works," which is a research support group that can offer help with dealing with EBV flares and treatments and lots of compassionate members, and books written by Medical Medium which many of the group members claim helped to quiet EBV symptoms and thyroid problems. Best wishes for your insight and healng.

Please check out an EBV research and support group, Stuff that Works. It has helped me with support and many treatment suggestions.

i got to 3mg and stopped since did not seen any improvement, i started on .5mg

@kkathysan, @gillysmom, and all...I just sent a message to you folks and remembered something I wanted to mention. I've had the same issues with frequent infections for the last 30+ years, acute and chronic sinus infections with surgery last year to remove a sphenoid infection that wouldn't respond to any treatments, 5 UTI infections last year, one with sepsis and all severe and with blood, kidney, lung, toe, lungs of course...I have a 'lousy' immune and autoimmune system like you. I can't believe you were 2years paralyzed. So sorry. My right arm was paralyzed for several months in my 20s after a tennis ball hit the base of my skull. To this day it gets weak with discomfort when I overdo it. I also had 2 episodes of total paralysis except for my eyes and mouth, thankfully for me, to this day with no diagnosis. I read recently this can occur as a side effect of a med I was taking. Lyrica? Neurontin? don't remember for sure, but I was stunned after reading this as the entire staff at that hospital thought I was trying to get a few days of 'spa-like' treatment! I was insulted and horrified at the thought!

Now have hypothyroidism and other diagnoses. I'm interested in Gamma Globulin infusions. I'm reading on that as well and will report what I find if different. I had IVIG infusions several years ago when misdiagnosed with Myasthenia gravis. Actually, they did help. May be due to vasculitis or ???? Our immune systems are wonky and give the docs a run for it. I'm thrilled with the Mayo diagnoses of several things I've dealt with alone for years.

Kathy, hope you get good results from the LDN. Praying for you and all.
elizabeth

@ess77 Thank you Elizabeth for your reply. I should clear up something for you, I apologize if the way I worded the paralysis with Guillian Barre as being paralyzed for 2 years. It was a 2 year recovery from the paralysis. I was in the hospital for 6 weeks at Duke University Hospital and then in my home hospital for another 3 or 4 weeks, then home for outpatient therapy. Guillian Barre' damages your nerves and it takes a long time for them to heal, which is why it took me a couple of years to finally get over this illness. I do still have residual effects from the nerve damage but not severe and consider myself blessed, that I recovered as well as I did. It sounds like you have had a time with your health as well. I will pray for your continued healing and progress toward good health in 2023. I always say, "One day at a time", is the best way to move forward with a grateful heart it is not something worse. Take care of yourself.

I was on 5 mg. but not sure if it was helping. I ran out of pills and after a week felt like I was going backwards. Sitting in the waiting room right now to get a renewal.

@kkathysan and all... Thank you for your message. I understand the sequence of events better, but you were still dealing with paralyzation and the damage of this disease. I hope you continue to be improved and able to handle the effects as time passes.

I've had multiple illnesses through the years, with most leaving ongoing damage or recurring illness. It's been a struggle, but I'm a determined lady with apparently an inner strength that keeps me fighting. At least that's what my docs say now. I am truly stubborn and won't give up, at times to my detriment.

I'm really exhausted, from life in general and the multitude of daily challenges. I'm determined 2023 will be a better year than last. Last year was truly the worst year of my life, both for me and for my 55-year-old son who's disabled with Dystonia for 20 years. I've pretty beaten up actually, we both are, but I'm getting to the point I'm grateful for every good moment and every good memory he and I can enjoy. They are few. I am a firm believer in the one day or one moment at a time. and have a deep faith God is in control. I just don't want any more lessons, don't want to learn anymore. He and I have had many such conversations. But, life goes on in its own lousy, wonky, horrid at times way.

I don't want to deal with more Sarcoid now. But, it is back so I'll handle it best I can. You've helped me on this site with possible treatment ideas. I'll let you know what my pulmonologist tomorrow tells me and the dermatologist on Thursday. Hope for different treatments with better results. Prednisone helps of course. I was on heavy pred for 8 months when first diagnosed with Sarcoid when I was 40. I do work, but the side effects are a horror for me. I was just on 50 mg for 3 days after visiting the Mayo ED with respiratory infections last month.
I requested the doc limit the days so I got some good effects without too many side effects. It helped me survive the worst of the infection and gave me enough energy to get out of bed. That's a wonder drug, with which I have a love/hate relationship. Hopefully, can avoid it now.

Be well. It's 5 p.m. in sunny, lovely, coldish Flordia. I'm closing down downstairs and heading up to my bed soon. I'm really tired and have a busy Mayo day tomorrow.
Blessings all. Elizabeth

To give you a laugh my husband always tells his doctor not to ever give him steroids again. If he does, my husband will kill him and put on his gravestone, “I told him not to give me steroids again.” You gotta laugh. Love/hate is the perfect description.

I too are now interested in this. Thanks so much for this post. I’m struggling with so many autoimmune diseases as well as terrible spinal issues and torn hips. There are times that I’m disgusted that I wake in so much pain.