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Are there any users of Low-Dose Naltrexone (LDN) out there? What time of evening do you take it? And what time is your normal bedtime? Your experiences with LDN?Has it helped?
Hi, @A MyMSTeam Member! Well, last summer I was a total wreck! Falling all the time and having a very hard time walking -even with a cane! I would fall and be unable to move or get back up! I had total exhaustion and terrible bladder function and control. And I had to stop driving! After I had my diagnosis, I started doing LOTS of research, and I got a copy of Dr. Jelinek's wonderful "Overcoming Multiple Sclerosis" book, and started following his program religiously!
Surprisingly, after 6-8 weeks on his program, I started to see very positive results!! MUCH sooner than I would have dared to hope! My walking recovered quite a bit and I got so I could lift the right knee as high as the left one!! And I stopped falling!! And my balance improved a lot! I also did a lot of research into MS drugs with the help of a wonderful PhD pharmacist, Alexa Drnjevich, who prepared an in-depth review of ALL of the MS drugs! (The neurologist was no help at all - he just wanted ME to pick one.) After a lot of research, and careful thought and soul-searching I elected to take none of the obscenely expensive, only marginally effective mainstream MS drugs with all of their awful side-effects! The mainstream MS drugs, BTW, are pretty ineffective for SPMS and PPMS. Mine appears to be relapse-remitting MS.
My research led me to LDN. When I asked my Physical Medicine Dr., Dr. Michael Gwinn, who diagnosed and is managing my MS about LDN, I was very pleasantly surprised to learn that he was familiar wih LDN and prescribes it for some fibromyalgia patients in his practice. I had taken him a lot of research on LDN and MS, and he reviewed it and was happy to prescribe LDN for me! After seeing and measuring my significant improvement with LDN, he was considering prescribing if for a couple of other MS patients in his practice! LDN has been a God-send and has done WONDERS for me. I’ll never be without it! As far as Dr. Gwinn and I can tell, my MS appears to be in REMISSION! – due to Dr.Jelinek’s “Overcoming Multiple Sclerosis” recovery program. My radiology is STABLE – unchanged from a year ago WITH NO NEW LESIONS!!
So I am most grateful and give thanks to God for His help and guidance. I’m not taking any mainstream MS drugs, and I’m doing VERY well and working on renewing my driver’s license!
I’m pleased to see that you are up to 4.5 mg/day of LDN! That’s the dose I have been on since February, and I’m doing very well with it! LDN is the biggest secret in the MS world and Big Pharma wants to keep it that way, because it’s off-patent and so CHEAP! Therefore they won’t sponsor or support the randomized clinical trials to get the Low-Dose formulation FDA approved for MS and other diseases. Big Pharma wants to keep us on the $5500/month MS drugs. I expect that the reason that Mayo took you off the MS drugs and your neuro has been willing to prescribe LDN is that the neuros know that the mainstream MS drugs are ineffective in treating SPMS and PPMS! I know several people with SPMS
@A MyMSTeam Member I'm so happy, but not surprised, to hear that the LDN has had such a noticeable effect on your tremors! It has done WONDERS for me. It seems, and Dr. Gwinn agrees, that I seem to have put my MS in remission with the combination of Dr. Jelinek's "Overcoming Multiple Sclerosis" recovery program!! I'm so thankful!! And I'm HUGELY improved over a year ago!! My walking is much better, my energy levels are great, and my "bad" right leg and right arm are pretty well recovered. I do still have some musculoskeletal issues that I've had for years since before and after my hip replacement, and Dr. Gwinn and I are working on those! I hope the LDN does as m[uch for you as it has for me!! I would strongly recommend that you get a copy of Dr. George Jelinek's book, "Overcoming Multiple Sclerosis" and follow his program religiously! It has also done wonders for me!Good luck and Best Wishes!! We CAN FIGHT this damnded disease - and do it without the awful, obscenely expensive mainstream MS drugs wit;h all their awful side-effects!!
Hi, @A MyMSTeam Member! Thanks for writing! Well, I'm surely with you regarding the DMDs. The only one that I would even consider is Copaxone (glatiramer acetate). It's been around for a long time and has by far the best safety record and has relatively benign side effects. I've researched all the DMDs very carefully with the help of a wonderful PhD pharmacist. Copaxone, unlike the other DMDs, is NOT an immuno-suppressant like the interferons. Especially because of my age (70) I plan to do my best to avoid all the DMDs. I'm religiously following Dr. George Jelinel's "Overcoming Multiple Sclerosis" recovery program. It has helped me a lot and now I'm adding LDN to assist. Do you think you are seeing any effects or benefits from the LDN? What dose are you on? What time of day do you take it? I suspect that you are well served by getting off the interferons! Check out Dr. Jelinek's book! You can find it on Amazon! It's a real eye-opener for people with MS. Dr. Jelinek is an Austrailian physician who is also afflicted with MS, but he has put his disease into remission and kept it there for over 14 years with his program! Good luck, Cathie! Please stay in touch!
Best time to take is depending on what time you go to bed - it should be taken some time before that.
I take mine 9 and go to bed at 10.
LDN and vitamin D3 are the things I take for my MS. Together with diet and physical exercise - they have kept me relapse free since I started with LDN 10 years ago.
If LDN makes it hard to sleep why is the recommendation to take at night? I p/up my rx today and fear insomnia.
Would like to get some ways of bringing my energy level back up and to get ideas of avoiding fatigue
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