Low Dose Naltrexone & Parkinson's

[Ianfrizell]

Hi all

This is a link to my latest vlog about Low Dose Naltrexone and Parkinson's

youtu.be/yxtGSzjd26k(Not working as expected?)

Cheers,

Ian

[parkie13]

Hi Ian, happy New Year to you.

I have been on LDN for about 3 years. It helps with the feeling of well-being and it lessens the pain of Parkinson. My first neurologist did not want to prescribe it for me. I send away for it myself from a Canadian pharmacy. I dissolved a 50 mg LDN pill in 50 mg of water and used the dosing syringe to get 3 milligrams daily. The physician's assistant that I am seeing now prescribed LDN for me, again 50 mg pill that I do dissolve. When I stop taking it I can see a difference for the worse. I would not say that it helps with movement. I also started seeing another movement specialist my first neurologist closed his practice.. He did not say anything about me taking LDN and I never asked him . Mary

[Ianfrizell in reply to parkie13]

Happy New Year, Mary!

Do you feel that it has slowed or halted progression?

[aspergerian]

Well focused, summarily sketched, with hope tempered by caution. Again, thank you.

[aspergerian]

Dr. J McCandless worked with autistic kids and worked in conjunction with Dr. Bahari until he had become too ill.

The google search "mccandless bahari ldn" without the quotes leads to more info. She carried on with ldn until her own death.

[rebtar]

I've been taking LDN for 2-3 years, not sure exactly when I started. My progression has been quite slow I think... but I have no idea if the LDN has played a part, as I also exercise quite a lot and take other supplements, and I've modified my diet. I keep taking it as it's not expensive, and the only downside that I'm aware of, is that if I'm suddenly hospitalized for an accident or something and need to take opioids for pain, it will block them, so I'd have to remember to tell someone that it's something I take.

[jimmydook in reply to rebtar]

Wot supplements do you take please?

[munnings]

I have been taking 4.5 LDN daily since 2013. I don't know for sure if it's actually doing anything for me but 2 PWP I know stopped LDN only to go back to taking it. I think I read somewhere that the benefits come from long term usage.

[Ianfrizell in reply to munnings]

Halting progression would be the Holy Grail for me, and I think you wouldn't notice that on a short term basis...

[Harleybob08]

Hi Ian, enjoy your chatter.

I have just started with LDN, a couple of months ago. I am also on amino acid protocol. I get dyskinesia when I take too much ldopa. Within a couple of weeks I had to back down from 3.9g/day to 2.7g/day. That’s pretty massive, and a good sign. Still hoping to feel better in the long term.

dicksonchemist.co.uk/new/

Dickson supply LDN with a shelf life of 12months, typically 28days is more common. If you ferret about on their site you will find a link to Prescribe4me, where you can speak to a doctor who is “LDN Friendly” and should provide a script for Dicksons. They in turn will post the LDN to you.

This is all uk based. My plan is to test it and then ask my GP to prescribe it.

Hope this helps, keep up the good work.

Peter.

[Ianfrizell in reply to Harleybob08]

Peter,

Thanks for your comments - let me know how you get on!

Ian

[SiouxS]

I've been taking LDN for a few years now and unfortunately I dont think its helped in the progression of the disease.

[Ianfrizell in reply to SiouxS]

That's a bummer... Why do you continue to take it if it hasn't benefitted you?

Ian

[Beverly2017]

Hi Ian. Great blog! I have taken LDN for almost 5 years. It has slowed progression I think, as my pd is hardly recognisable. I excercise daily and am gluten free. Ldn has enabled me to keep my l-dopa dose down. Hence hardly any dyskinesia. I take 4 mg once a day and also order it from a cdn pharmacy. I dissolve the 50 mg tab in 50 cc of water and take 4 cc in a syringe. I went off LDN for 1 week but I got very shakey so I went back on it. I am very happy with LDN. Side effects are minimal. My nuerologist is ok with me taking it. Besides slowing progression you can take way less l-dopa which is a huge plus. I recommend it.

[Ianfrizell in reply to Beverly2017]

Beverly

Thanks for your comments - very encouraging!

Ian

[Beverly2017]

Thankyou Ian for your blog. Remember you won't see results from LDN for awhile when you realise you aren't progressing