Low dose naltrexone and PD: Has anyone with... - Cure Parkinson's

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Low dose naltrexone and PD

Dragonflyfairie profile image
29 Replies

Has anyone with PD benefitted from taking low dose naltrexone?

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Dragonflyfairie profile image
Dragonflyfairie
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29 Replies
Hope-full1970 profile image
Hope-full1970

I have been on it for over a year. My Naturopath prescribed it soon after I was diagnosed. I just started seeing a new Osteopathic Dr. and he said stay on it!

I believe it is helping me with any inner inflammation. I take 4.5 mg

The first Dr who put me on it said he had another patient who was far worse off than I was and he was seeing tremendous success with LDN.

For anyone interested I think it's worth looking into and could possibly help. This is another one of those drugs that will work better for some than others. It is FDA approved at 50 mg. and the therapeutic dose for autoimmune disease is 4.5 mg. so it is very safe.

ncbi.nlm.nih.gov/pmc/articl...

Dragonflyfairie profile image
Dragonflyfairie in reply to Hope-full1970

Thanks so much for responding. I'm titrating to 3 mg after 2 weeks at 1.5. How long did it take before you noticed benefits? Do you take it at night or in the morning? Are you taking CL as well or other medications? Thank you again.

Hope-full1970 profile image
Hope-full1970 in reply to Dragonflyfairie

I would say about 4-6 weeks but I think it's different for everyone. The longer you stay on it the more results you will see.I am not on any medication.I am taking a total of 8 natural supplements.

I was taking it at night and it was interfering with my sleep. I asked the pharmacist and Dr. if I could switch to morning and they said yes. Now I'm sleeping much better.

Dragonflyfairie profile image
Dragonflyfairie in reply to Hope-full1970

Awesome!!! I've also changed to morning and will see if that makes a difference. I just learned that I have LRRK2 genetic marker and am waiting to see what my B12 levels are. Taking Coq10, vitamin D and cinnamon CBD oil.

Hope-full1970 profile image
Hope-full1970 in reply to Dragonflyfairie

It sounds like you are doing a great job checking any underlying issues and trying to keep the disease at bay.With LDN the first thing I noticed was my arm started swinging normally again.

It's hard saying where I would be without it.

gaga1958 profile image
gaga1958 in reply to Dragonflyfairie

need K2 together with your vitamin D3 according to what Ive been reading

GigiOf8 profile image
GigiOf8 in reply to Hope-full1970

Could you please list the 8 supplements you are taking? If you are doing well without meds we would ALL love to know how?

Hope-full1970 profile image
Hope-full1970 in reply to GigiOf8

I'm doing well with out meds right now but I am not against it. I was ready to start mucuna with a small prescription of carbidopa but a new Dr. I am seeing said wait. He is working on removing toxins, building up my immune system and craniosacral therapy. He is seeing less rigidity every week and I'm feeling it. I'm walking better, driving better and able to do more. I'm 54 so the longer I can hold off meds the better.I have a long way to go.It's been 2 years since onset.

I'm taking b1 therapy sublingual

Magnesium glyconate

Fatty 15

CDP Choline

LDN 4.5 mg

Vitamin C

Glutathione

B-Complex(Naturelo)

Lithium Orotate 5mg.

5htp

L-Tryptophan

That's definitely more than 8😆

I'm just like everyone else, just trying to figure it out and do my best.

I would say one thing I can garuantee that works is exercise. I have been told my whole life by my mom " if you don't use it you will lose it. " The Neurologist said the same thing. With PD its more true than ever.

PD is a fighting battle. If I see myself slouching I mentally battle to hold my shoulders back and my head up.

I am staying social and don't try to hide anything. I have come a long way in acceptance but I won't let it win. I'm still me.

Erniediaz1018 profile image
Erniediaz1018 in reply to Hope-full1970

Thank you for sharing your experience. Do you have tremor and if so what works on it for you?

Hope-full1970 profile image
Hope-full1970 in reply to Erniediaz1018

Tremor is my most frustrating dominant issue! It comes and goes. Keeping calm and lowering stress are huge. Exercise helps alot too.

I wish I had a garunteed remedy I could share.

I'm going to an excellent Dr. right now who is unraveling some of my issues.

If he puts me on anything that helps with tremors, I Will share it on HU.

Dragonflyfairie profile image
Dragonflyfairie in reply to Hope-full1970

I crochet, use copaiba and frankincense essential oils. I also massage pressure points. I find all of these help with tremors - I tend to switch them up a bit.

Hope-full1970 profile image
Hope-full1970 in reply to Dragonflyfairie

I'll look into these. Thanks!

Dragonflyfairie profile image
Dragonflyfairie in reply to Hope-full1970

Would love to hear if any of these protocols work for you. I also do tapping and have a massage chair cushion. All of these seem to work. Just hoping now that LDN- might help with balance...

Hope-full1970 profile image
Hope-full1970 in reply to Dragonflyfairie

Yes, I'll let you know! 😊

GigiOf8 profile image
GigiOf8 in reply to Hope-full1970

Thank you for sharing

JayPwP profile image
JayPwP in reply to Hope-full1970

What does Fatty 15 do? Why L-Tryptophan?

Hope-full1970 profile image
Hope-full1970 in reply to JayPwP

m.nutritioninsight.com/news...

Here is some information on Fatty 15. It is said to be more complete than fish oil but I would recommend doing your own research if you are interested in the supplement. My Naturopath put me on Fatty 15.

L-Tryptophan is the same nutrient that is found in turkey that makes you sleepy.

It is a great supplement for sleep and it really works with no side effects. I use Source Naturals brand.

JayPwP profile image
JayPwP in reply to Hope-full1970

Thank you

HolisticPeds profile image
HolisticPeds in reply to Hope-full1970

Yes. I've been using it several years. It helped almost immediately with my energy levels - no longer need the 3pm nap. I take 3-4 mg daily at night. After reading the other posts, I may switch to morning doses to see if that helps me sleep better at night.

Hope-full1970 profile image
Hope-full1970 in reply to HolisticPeds

Do you think it has slowed the progression of the disease for you?Have you seen more benefits over time?

JayPwP profile image
JayPwP in reply to Hope-full1970

How do you measure 4.5mg? What is your dosing regimen, LDN as well as other interventions? Is it available over the counter?

Hope-full1970 profile image
Hope-full1970 in reply to JayPwP

The pharmacist measures it out. Osteopathic and Naturopath Dr's. are very familiar with it. I know 3 Drs.that take it themselves. You can also ask your general practitioner about it. It's a prescription but so safe and FDA approved, you will probably have an easy time getting a prescription. I take 4.5 mg. I started at a lower dose and worked up.

I listed my other supplements above. If you have any questions please let me know.

If you do the research on LDN it's pretty impressive.

JayPwP profile image
JayPwP in reply to Hope-full1970

Thank you

Dragonflyfairie profile image
Dragonflyfairie

Yeah trying to be my own advocate and feel that I made strides by being assertive in sharing resources with my GP about LDN. He listens to me unlike my neurologist or MDS. I believe that my last COVID shot triggered my PD and I'm concerned about having another one.

Hope-full1970 profile image
Hope-full1970 in reply to Dragonflyfairie

I also use a GP and DOThe Neurologists I saw were terrible.

gomelgo profile image
gomelgo

I am now considering trying it again having read this. I was recommended it when I was first diagnosed by a holistic NP. I tried it for a week or so and got scared about the possibility of nightmares or vivid dreams. They say this is one of the "side" effects. Anyone here having that issue? I wonder if my current integral med doc could prescribe it. Or maybe even my very open minded neuro.

Dragonflyfairie profile image
Dragonflyfairie in reply to gomelgo

I'm not having any nightmares and am on 3 mg. The only side effect I noticed was gerd the night of first taking it and the night switching to 3 mg. Good luck asking for the prescription, it took awhile to convince my GP to prescribe it

gomelgo profile image
gomelgo in reply to Dragonflyfairie

Is GERD something you had previously, or just spurred by the LDN?

Dragonflyfairie profile image
Dragonflyfairie

Never have had it. It was just those 2 nights.

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