I keep forgetting to put info on here as to what LDN (LOW DOSE NALTREXONE) has done for me. I have been on it since November of 2009, and I do notice that the temperature that it's stored at makes a difference in its effectiveness. My diagnosis: SJOGRENS, LUPUS, RA, AND NASH. The things helped:
DRY EYES/NOSE/PERINEUM: all gone within 24 hours of first dose of LDN!
LEAKY BLADDER (bad leakage): no longer leaks (took 24 hrs after first dose to stop leaking).
RESTLESS LEGS SYNDROME (took only 24 hours to stop that also)
MUSCLE CRAMPS: Has not stopped it completely...I still get some in my thighs and neck, but mostly they occur during very high stress situations. For the most part, I can say that 90% of the cramping is gone.
Memory and concentration (noticed a big difference within a week of first LDN capsule). BUT it did not take care of allllll memory and concentration issues. I did have an episode a couple of weeks ago of total disorientation and was about 1/2 a mile from home and couldn't remember how to get home, and this was right after starting a dose of 3000 IU of Vitamin D3). OTHERWISE, since taking LDN, I seem to have a better memory than my children who are in their 20's.
LONG BONE PAIN is gone. It comes back when my LDN is left in the sun, or is old. So, my next batch of LDN will be in only a one month supply and I'm hoping that will take care of the issue, and I will also keep it in the fridge, just in case. I also have the long bone pain return if I'm under severe stress. I did notice the Vitamin D high doses took away the long bone pain also. I was tested for Vitamin D levels and came out at a 20. So, I started at the 3000 IU per day, and had that disorientation, so went to 2000 IU. I usually can't spend time in the sun, as it puts me to sleep, but I seem to tolerate 30 minutes ok. So, since that gives us 10,000 IU of Vit D naturally (according to vitamindcouncil.org), I think that's my best solution.
ENERGY LEVEL has increased 10 fold since taking LDN. I run circles around my kids and husband.
WEAKNESS: BEFORE LDN, I had a problem with weakness in my arms and around the middle of my torso. I noticed I couldn't stand at the kitchen sink and wash dishes without having to sit, and catch a breath after just a few minutes. WITH LDN, that problem disappeared within the first 24 hours. BUT... since my LDN is coming in a 7 month supply from SKIPS, I noticed that the weakness is now coming back, and don't know if it's the freshness issue or the daylight savings time issue. My arms are again so weak that I cannot lie on my back and text someone with my cell phone and cannot hold my kindle in the air to read while on my back. That's just been in the past month. I'm hoping a fresh dose of LDN will make the difference.
PAIN in the heals used to be soooo bad as soon as I went to bed. Within 24 hours of my first LDN capsule, that went away.
ONE THING NOT HELPED is the arthritis. I have to say it's helped it about maybe 60%, but not entirely. I have some swelling still and mostly have the heat in the joints after eating cheap pasta I buy at walmart (generic). My daughter has the same issue. But, Sometimes there is no swelling or pain. I also have suddenly had a problem with joint degeneration. During High stress times, I have found that the day after a high stress day, I can't walk due to my left hip and leg being in so much pain. I just had it x-rayed and was told the hip joints show slight degerative disease. The pain is horrendous. That's all new. Had burning in hip bones all my life, but this extreme pain and inability to walk after stressful days is new.
IMMUNITY: I almost NEVER GET SICK anymore since taking LDN. I believe I have been sick only twice since being on LDN, but before LDN I was always sick with everything that someone brought into the room, no matter what the virus was, I had it.
PHOTOPHOBIA: I no longer have trouble with pain behind my eyes when in bright lights, tho I am more sensitive than my husband who has no illnesses. But my sensitivity is very minimal since being on LDN.
I did give up all other Lupus and Sjogrens medications, such as methotrexate, plaquenil, enbril, etc. But with the joints causing the issues I now have, I'm wondering if anyone knows what works for stopping that degenerative bone loss and will work with the LDN instead of against iT? I know Enbril and Methotrexate work against it and my body feels it.
Last time I was in the sun for two hours I slept for 36 hours straight, and don't want to do that again. I have heard of a teen that was not warned to stay out of the sun (Lupus victim) and she went hiking and her kidneys failed after a full day in the sun. SO, I'm not brave enough to try that to see if LDN helps that at all.
Interesting - I'm going to ask my Rheumatologist about LDN - I'm currently taking Plaquenil. Thanks for posting about your results. Wish I could say Plaquenil did as much.
Plaquenil is used for joint and skin issues and is supposed to slow the progression of SJS. Also used with Lupus and RA. I am not sure if it interacts/interfers with LDN though.
Nancy