Is anyone still taking Low Dose Naltrexone (LDN) to alleviate their Parkinson's symptoms to good effect?

When I first joined this website over a year ago there was much discussion about LDN and the beneficial effect it was having on some PwP symptoms. However, since then it has hardly been mentioned. I am asking if anyone is still taking LDN and what are the benefits they experience?

29 Replies

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  • I have tried to get my doctor to give me a prescription, but he won't. I am also very interested in knowing if anyone has had any success using LDN. Thanks.

  • hello Maryalice

    Sorry to read about your doctor not writing a prescription for you. I believe all is not lost though and there may be ways around it. Hopefully someone will respond telling us how, legally of course.

    Norton

  • hi,Norton,

    i mentioned LDN to my neurologist and he gave me the prescription. I am planning to start it next week. I am on azilect and neuro patch. he want me to replace patch with LDN since it doesn't really work. let you know. i live in US.

  • Hello Viva

    Thank you for letting us know that you will be trying LDN soon. It sounds like you have an open minded neurologist. There is no doubting that there will be quite a few PwP eager to follow your experience. Looking forward to hearing again from you in the not too distant future.

    Regards

    Norton

  • Hello Viva

    Some months ago you started taking LDN. You mentioned giving us an update and I would be grateful if you would tell us how you got on.

    Kind regards

    Norton1

  • Hello, Norton,

    I apologize for the delay with my reply.

    I was away from home for the whole summer.

    I was taking LDN for a month only - did not feel any magic, may be only improved mood. I've heard you should try it for at least a few months to see any possible result.

    I did not have that luxury to continue: I had to go overseas for the whole summer, because my husband worked there and was afraid to leave me with small child at home alone. In the end of winter I was on azilect- my only meds- (also at the time of trying LDN) my condition was so bad, we had to find a medication that will put me on my feet fast to be able to go overseas since i was not able to drive at that time. my neurologist prescribed (unfortunately or not) carb/levo 25-100mg and it saved my life at least until and for now. I became almost the same person as before dx with parkinsonism. I am worried about this med in the future, since I read and heard a lot about cons of taking it. How else you get enough supply of dopamine if your body probably produces almost none?

    sorry, if i did not give you any valued info on LDN. Have you tried it? It cost me $48 for a month supply from compound pharmacy. Will appreciate your reply.

    sincerely,

    viva

  • Hello Viva

    Thank you for your reply. As you are probably aware, there are some PwP who do exceptionally well on LDN, but there are others who it does nothing for at all. I have not tried LDN myself because I have tended to try out diets such as the Ketogenic and Vegan diets, because is believe the type of food we eat to be important regarding the progression of Parkinson's.

    Regarding allopathic medication, I fully expect to be taking it for for the rest of my life, but I hope not to increase it much, if possible. Right now I take Sinemet several times a day and manage to live a reasonable lifestyle on it. For instance only last Monday I spent half a day canoeing with my wife - enjoyable.

    Kind regards

    Norton1

  • That is great, Norton! I did water sliding recently,which is a big deal for me. Before the carb/levo i was not able to swim, because if i swim, i cannot stand up right after that. Does it make aany difference if you take generic or brand name med? Sinemet vs. carb/levo? Do you know?

    Thank you for your reply,

    viva

  • Viva

    I have tremor dominant parkinsons which means that i can not walk properly when my medication wears off, neither can I write or cycle properly. These symptoms all improve sometime after taking my Sinemet dose. It appears that you are confused as to what Sinemet is. It contains Levadopa/carbidopa.

    Regards

    Norton1

  • Hi All,

    If any of you remember, I think I started the LDN debate. So far I'm 6 years into this disease, came off all my PD meds 2 years ago when I started LDN and never looked back. I know a lot of people with PD who do really well on LDN. It takes time and patience. It can be difficult to find a doctor or neurologist to prescribe, but if you down load the data available...there is no downside, no nasty side effects, but it can take months to work for some people. So my advise is persevere...it could be worth it. We know its safe as it is FDA approved 20 years ago and the dose is so small...4.5mg

  • Thank you Annh.

    You make it quite clear that we need to be patient if we want to see positive results. As one who gets a little dispirited if I do not see any benefits even after only two weeks of trying something new, clearly this is something you embark on for the long haul.

    Being able to drop your PD meds soon after starting LDN is a big incentive, but I suppose not everyone will experience such a quick turn around. Thank you for sharing your experience with us.

    Regards

    Norton

  • Helle Annh, My name is Annette and I am considering to start with LDN. Were you taking Parkinson medication before? If so, what was the dosage of what you used and how long did it take you? I would like to start an e-mail communication about LDN with you, since you seem quite knowledgeable. I share infornation in Dutch with many others on Parkinson-related issues. Kindly send me an e-mail through my website: annetteschaap.nl THANKS!

  • Dear Annh

    I am relatively new in the comunity . I have just read all your posts about LDN

    and I noticed you mention that along with LDN you are also taking some supplements . I believe that this is what greatly and mainly supports and

    helps you retain your present condition ( being symptom free and unmedicated ) I am also taking some supplements but unfortunately with a lot ot of meds ( mirapexin , azilect, symmetrel, madopar, comtan) . I am doing well but I supppose I owe this to the supplements because every time I forget to take anyone of them for a couple of days my so hardly and painfully earned good condition is disturbed . I am planning to discontinnue slowly

    all meds because I know their devastating effects on our body but I don t know how. the only I have though of is starting by replacing madopar with mucuna pruriens. I would be deeply indebted if you could give me a detailed list of the supplements you are taking and tell me whether you are still taking LDN and how you are doing at the moment

    I am looking forward to your reply with anticpation .

    Thank you very much

    and best wishes

  • Norton,

    My neurologist also refused to give me a prescription for LDN. I assume it is about liability issues since it is not FDA approved to treat neurodegenerative diseases. My wellness Dr. did prescribe it for me since she practices alterative medicine. I have also heard it takes 4 yrs. to work as far as easing symptoms and halting progression, however my benefits were right away. I experienced a 75% reduction in muscle pain and my sleep improved. I can also attest to the anti-depressive benefits....all those endorphins it causes you to produce. I will continue to take it for ever and know I will see benefits. My sister also takes it for her MS and she has also seen benefits with her energy level and sleep. I think it is a miraculous inexpensive drug with many benefits for autoimmune diseases and neurodegenerative ones .....

    Sincerely,

    BMakla54

  • Hello Bmakla54

    Thank you for again sharing your positive experience in taking LDN. Like Annh above, I note that you stress this is a long term commitment, but you fortunately saw some benefits quickly as did your sister who has MS.

    In particular, I note that for both of you, your sleep improved, a huge plus point on that alone, but you have also experienced its anti-depressive benefits in addition.

    Clearly though, getting a prescription for LDN is a hit and miss affair, a bit like pushing mud uphill using your nose, but it may prove to be worth the effort. Has anyone any advice on how to get a prescription, legally, if your doctor/neurologist will not support you? We, after all, are the ones who need to try things out, even when not mainstream medications.

    Regards

    Norton

  • How has LDN worked for embarrassing tremors?

  • Hello Merzem

    Thank you for your question. This problem is a difficult one to get to grips with. I think that it is highly unlikely that you can permanently rid yourself of tremors using LDN. It seems that the best you can achieve is a lessening of your tremor or a temporary cessation using the standard PD medications.

    Regards

    Norton

  • This norton

  • Thx norton

  • Thank you Norton and everyone for info on LDN. I may give it a try.

  • Hello Zena67

    I am pleased that you feel inspired to give the LDN a try. It would be helpful to others who may be so inclined to tell us how easy it was to obtain a prescription, which country you live in and possibly occasionally tell us how you are getting on with it.

    Best wishes

    Norton

  • To potential UK LDN users. I carried out an Internet search on the availability of LDN in the UK and it appears that it is unlikely that you will get a prescription on the NHS because it has never been trialled for treating Parkinson's. However, there are doctors in the UK who may prescribe it after a telephone consultation which the cost is approximately £30. You can then find out where you can buy the LDN on a monthly basis at reasonable cost. As I say, all this information is easily found out on the Internet.

    Norton

  • Hi Norton and others interested in LDN. I was able to find Naltrexone at the following website:

    internationaldrugmart.com/

    It is regular Naltrexone at 10mg. at a cheaper cost than others I found. I will have to compound it myself into liquid, by using distilled water and a ml. dropper and get the dosage to 4.5mg (suggested) for low dose treatment. In my case, I may compound it to a smaller dose (maybe 3 or 4 mg.instead ) because I tried the LDN a while back at the 4.5 mg. capsule. (purchased from a pharmacy in New York) and it gave me a rash.

    No prescription necessary, and they will provide worldwide shipping free of shipping charge. In my case, Colombia, I may have to pay some import duty.

  • Thank you Allnatural for sharing with all of us the information you have researched and how you intend to take it. Please keep us informed on its effectiveness on your PD

    Regards

    Norton

  • What country are you in that lets anything in? Never mind - I just saw UK. Do you send mail to the USA often? (I don't know how to make that smiley face. I'm birth date impaired.)

  • Hi Norton and everybody reading this

    I obtained a 3 month supply of LDN 4.5mg and gave it ago, cost me $150 - results I felt where neutral - what I would like to see is some pd sufferers apart from ann who have felt real benefits. Maybe I have failed because I stopped taking LDN to early. I will consider a restart and persevere longer. What are other members thoughts on lack beneficial effects for us pders?

  • Hello anybody who has taken LDN

    It looks like Johnson has not received any more feedback on using LDN which was requested above. Can anybody please give some feedback please to help?

    Thank you in anticipation.

    Norton

  • Thank you Johnson for your post and question. I think that those who replied above were taking it a lot longer than three months. Can anybody taking LDN please give Johnson some advice please?

    Thank you

    Norton

  • Yes, there are many people taking LDN ; but most of them with MS ; pl long on FB account & see this link : facebook.com/groups/GotEndo...

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