Have you used low dose naltrexone? How has it helped you? Kept progression from happening? Helped with symptoms? How long did you take it? Caused any side effects? I’ve read it can help with depression & fatigue. Anyone have that experience? I see not such good information about using it on the national sclerosis society website, like they don’t approve of it? Thank you
Hi Bamboo, as of late, I've been doing superhuman weekends, playing music till 4:30am 2 days in a row, cooking elaborate meals for multi-events (we're talking hours of cooking...), all while working and driving 3 hours a day, so compared to a year ago, I'd say yes I have less fatigue on LDN. I also have Babasia which explodes my red blood cells and causes a lack of oxygen which makes you feel extremely exhausted....Definitely way happier than when on opiates. I like the combination of the two as all receptors are tied up; I was out of LDN for a week and an half and definitely noticed a difference. My doc said to wait 3 weeks to start LDN moving off of opiates, conversely, if you take an opiate while on LDN, it will block it from relieving pain as the receptor is already bound, technically 13 hours to clear according to metabolic half life, so I'd allow 2 days but it's not good to ping-pong back and forth . Here are 2 links that have a dirth of info on LDN.
https://www.ldnresearchtrust.org/content/low-do...
http://www.swedesdock.com/LDN/Opiates/ - see links at bottom also
I used it for maybe two years. I did not feel any difference with it. It became very complicated to obtain it, both getting a prescription and also getting the drug compounded. I gave up. Now I know there are ways to order it from a compounding pharmacy in another state, if I could get a doctor to prescribe it. I've asked several doctors and they all say it does nothing for MS, and refuse to prescribe it. Even so, most of the people I know with MS take it.
One thing LDN does is prevent several kinds of cancer, like breast and skin cancer. People with MS are prone to melanoma, which I've had several times and nearly died from once. I'd take LDN for that reason alone, if I could get it.
Totally has made a difference! I am in acute pain without it. You cannot be on opioids and take it, as it binds to the opiate receptors which is why it is fabulous for blocking pain. The other 2 pain receptors are cannoboid receptors, and once I moved to MMJ once legalized in Florida, I went off opiates and onto LDN to manage my bone pain caused from the bartonella inside my bones. That's a wicked bad pain, I use what I call the "Glock-O-Meter" to measure my days, the days (like on a full moon when the pains off the charts), meter far to the right by the trigger....Hide the guns and grab the cat and netflix
binge. :P Depression is definitely less, my lyme has messed up my endocrines system bad so I live with extreme adrenal fatigue despite thyroid therapy as it's a viscious non-relenting cycle... I find music to be an antidepressant, unless I can't perform/attend because it's TOO FRICKIN HOT and my body shuts down and my brain melts...
I can't take anything that lowers my immune response due to the lyme disease, bartonella and babesia, so haven't been on those; but yes, I did titrate up the LDN, here's the instructions my doc gave me: 'Dissolve 1 tab into 50 ml of water. Store the solution in a covered container in the
refrigerator. Add stevia to help the awful taste. Take 1 ml at bedtime, gradually increasing by ½ ml
each week to 3 - 4.5 ml." I actually don't find the taste that bad, but then, I take some definitely nasty tinctures for lyme disease so likely have a greater tolerance for that sort of thing. It's bitter. 50ml is 1/4 cup. I actually have been storing mine at room temp. Give it a stir with the dosing syringe before using each time.
@A MyMSTeam Member thank you be well