LDN

[Tjayoo]

Hi all, is any loved on or been on a little known generic drug Low Dose Naltrexone (LDN)? Although CBD/PSP not mentioned, it is used for Autoimmune, Neurological, Parkinsons and MS. I am just about to read a book ‘Up the Creek With a Paddle by Mary Boyle Bradley’ where it cured MS, I’ll let you know if I learn anything, I won’t be holding my breath...

[Kevin_1]

Hi Tjayoo... Please do come back.

Does your loved one have PSP or CBD?

And, the best of luck to you both.

Yes agreeing, breath holding is the route to the roller coaster, but hope is a wonderful thing.

Kevin

[Tjayoo in reply to Kevin_1]

Hi Kevin, my wife has CBD and I have tried to find something that might help but sorry to report nothing found as yet in three years, but I agree hope keeps me going with a good dash of faith.

[carehope in reply to Tjayoo]

Hi Tjayoo.

Studies have shown that low dose Naltrexone can be helpful in autoimmune related inflammatory disorders. Examples: MS as you stated, Fibromyalgia, Crohn's disease, other neuro. affecting conditions that produce inflammatory symptoms that result in pain. I've had it prescribed as part of the approach to deal with the effects of Lyme disease which causes a great deal of inflammation. Since I'm also using other mainstream meds to directly treat Lyme and other co- infections from the other diseases that tick bites transmit along with the Lyme disease causing bacteria, I have not taken it on a regular basis. In low doses ( ex. 4 mg pills, up to several times daily, ) it may be beneficial. However, unless, your loved one with PSP is also having signs and symptoms of inflammation, it may or may not be helpful. It will not change the diagnosis of PSP, but apparently increases the endorphin level just slightly whiich may help decrease any inflammatory response they might be having. Therefore they may feel less unwell. I think that we should understand that Low Dose Naltrexone has no direct effect on how PSP affects the brain.

Helping with inflammation ? Why not try it , if tolerated .Nothing to lose, right ?! Good luck ! Your wife is so fortunate to have you by her side !! Keep us posted !!

Elise

[Yanno]

Hello Tjayoo

My wife has Multiple System Atrophy (MSA) and I followed this community and was greatly inspired by it before we set up our own community for MSA. Due to the many common issues between MSA and PSP, I still follow with interest your group.

Some time ago Jackie started LDN on a trial basis as we had heard good things about it's beneficial effects on those with Parkinson's and MS (not MSA!). I tried over many weeks to get some response from the LDN community on HealthUnlocked and eventually received some useful, perhaps not hopeful, comments. I copy below my post from the Multiple Systems Atrophy community about this.

Jackie is still on liquid LDN albeit on a low dose due to some adverse reactions on a higher dose (headaches in particular). As far as we can tell she is not noticing any benefit but of course MSA, like PSP is degenerative and the big unknown is 'would the degeneration have been faster without LDN' - we may never know.

My post read:-

"A close friend of ours has a neighbour who took LDN and found it to be very beneficial for Parkinson's and so recommended it to us as MSA, whilst not being Parkinson's shares some symptoms and medication. I have had a tortuous time trying to gain any information about LDN as a treatment for MSA including writing to some of their advocates in the USA. I placed a number of posts on the LDN community of HealthUnlocked asking for help. Sadly I think that community is more of a promotion platform for LDN rather than a true community such as ours. In the end I received two comments from the LDN Trust that are worth repeating:-

"There is no information about Multiple System Atrophy and LDN in our files, nor do we have any testimonials from patients with this issue. A quick look-up of MSA says it's a neurodegenerative disorder, not an auto-immune or inflammatory issue, so LDN would be an experiment for you and your doctor. LDN is relatively benign, so if your medical team agrees to try it, it might be a good idea."

"I did ask our Radio Show interviewee (Dr. Jill Cottel) your question today. She said her patients with neurodegenerative diseases took much, much longer to see beneficial results. As long as one full year. Out of several hundred patients on LDN in her practice, she is only treating a few patients with these issues." The full exchange of posts is still on the LDN community."

Take care and thanks to everyone for the inspiration we received from your group to start our own community. Ian

[Kevin_1 in reply to Yanno]

Waiving at you both Yanno

Thanks for the post from us too.

Warmly

Kevin

[Rosie_P]

I have been taking LDN for an auto immune condition, Hashimoto's disease. It boosts the immune system without sending it into orbit. My levels have improved since I've been taking it. I have noticed no side effects. I highly recommend trying it. 😊

[positiveness in reply to Rosie_P]

I strongly recommend trying it as well, and remember to keep in mind that LDN works gradually. I have MS, and have been on LDN for about 7 months now. The positive change in me has been phenomenal. I would of never thought my own immune system could make such an epic change in my ability to do so much more. I have a long list of positive changes.

[Docches]

I have read about it and would love to find a dr that would try it on my sister with CDB. I think the dopamine boost would really improve quality of life.

There is a Ldn connference in Portland OR this weekend. You can watch the conference online.

ldnresearchtrust.org/

[Rosie_P]

Forgot to mention this!: Taking Alpha Lipoic Acid with LDN improves efficacy immensely 😊 200-300mg capsule. LDN is best taken from 9:00pm-12:00am timeframe. Take Alpha Lipoic Acid at same time. If you would like the research on this I can dig it up...