Experiences with Low Dose Naltrexone

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TheBrain
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Re: Experiences with Low Dose Naltrexone

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Julie, LDN is a compounded Rx, so only a compounding pharmacy can fill the Rx. I have a secondary (an Indian tribe, of which I'm a member) that is kindly reimbursing me for my $66 per month compounded LDN Rx. Unfortunately, most people have to pay out of pocket for it.
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Re: Experiences with Low Dose Naltrexone

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TheBrain wrote:Julie, LDN is a compounded Rx, so only a compounding pharmacy can fill the Rx. I have a secondary (an Indian tribe, of which I'm a member) that is kindly reimbursing me for my $66 per month compounded LDN Rx. Unfortunately, most people have to pay out of pocket for it.
Thanks! That's what I assumed, but thought I would ask. When my husband asked me what I wanted for Christmas this year, I just said "supplements"! :lol:
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Re: Experiences with Low Dose Naltrexone

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My husband tracks our expenditures in Quicken. Last year, we spent around $7K on my supplements (what he jokingly refers to as "snake oil"). My GI restoration program cost us $6K last year. Given our current retirement income, that's a lot of money! He didn't know what he was getting himself into when he married me 29 years ago!
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Re: Experiences with Low Dose Naltrexone

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Hi all! I figured it was about time to update you on my LDN experiment. I had a major setback on January 3rd in which I was hit from behind by a snowboarder that left me with a concussion, whiplash, and a few broken ribs. You can't take narcotics with LDN (and I really needed them while trying to heal) but I made do with several Toradol injections, lidocaine patches, and as few ani-inflammatories as possible to protect my gut. I maintained my LDN schedule and have now worked up to my full dose of 4.5mg. I'm thankfully sleeping very well. Disturbed sleep is a possible side effect. The benefit have been both subjectively and objectively nothing short of miraculous.

I feel so much better. If you've ever seen Dr. Bredesen's talk where he describes our ApoE4 genotype, with it's RelA dominance, as being synonymous with North Korea (big guns at the ready) and the other APOE genotypes, with SirT1 dominance, as being in a hippie commune (peace, love, etc.), you'll understand when I say I feel like I've switched camps. My "fight or flight" is gone. It's like I'm in a constant state of meditative bliss. My energy is great. I'm doing strength training every day and my 4 mile daily walk has turned into at least two miles of spontaneous running interspersed with period of fast walking, in a HIIT pattern. The most exciting part has been the actual improvement in my immune function as measured by IgG. Despite every other month IVIG infusions, my IgG has been holding at the very bottom of the normal reference range, around 600 (reference: 600-1,500.) For the first time ever it was up by 100 points for a whopping 700 last month. My immunologist still encouraged me to get the infusion so I'm holding my breathe to see if I will maintain my level or even gain a bit. (The effects of the infusion are completely gone by 30 days.) My WBC count has always been below range, it's now in range, still near the bottom. Same with my complete protein. On a side note, I've recently learned that I'm cured of my babesiosis. I probably was months before beginning this treatment. I still have plenty of issues, but I'm making amazing strides and wanted to share in case this could be of benefit to others.
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Re: Experiences with Low Dose Naltrexone

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Congrats, Julie! And thanks for sharing.
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Re: Experiences with Low Dose Naltrexone

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That is such a wonderful report.
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Re: Experiences with Low Dose Naltrexone

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Julie,

I’m so sorry to hear about your major accident due to being run into by a snowboarder. I’ve heard how painful broken ribs can be, and you sure didn’t need a cconcussion!

At the same time, I’m delighted to hear how amazing you’re feeling from the LDN! Wow, to switch camps from fight or flight to meditative bliss is astonishing. Congrats!

And it’s awesome that you’re now cured from babesiosis.
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Re: Experiences with Low Dose Naltrexone

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Julie G wrote:I had a major setback on January 3rd in which I was hit from behind by a snowboarder that left me with a concussion, whiplash, and a few broken ribs.
I feel so much better.
Julie G--I had no idea you had been through all that in January! Hope you are healing. And so great about your experience with LDN! Peace and love hippie life sounds pretty good to me! Thanks for sharing about this.
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Re: Experiences with Low Dose Naltrexone

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My wife did not respond well to it at all.

She would lay in bed and her arms and legs would just twitch and move.
She was unable to get any sleep.

The doctor recommended she stop taking it after a week, and she feels much better now.

She has hashimotos.
The doctor thinks that she can get her numbers closer to the ideal range by eating a gluten-free diet.

Also, she was (over) prescribed levothyroxine for the last 15 years.

The new doctor (naturopath) started her on NP thyroid.

She feels a lot better.

And, I can tell she has a calmer mood lately.
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Re: Experiences with Low Dose Naltrexone

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My wife did not respond well to it at all.
I'm sorry, my friend. More proof that there's no "one-size-fits-all" for optimizing health. I'm curious about the dose that you started with. I've also heard that there's a small subset of people who need to take it in the morning because of disrupted sleep, but not specifically uncontrollable movements. I suspect that there are some important take-aways you can pull out from this N=1 experiment... although I have no idea what they are. I'm happy that your wife is off of them for now and able to once again sleep.

I'm still struggling to understand all of the ways in which LDN works so that I can better understand the effect that it's having on me. A very straight forward explanation is that in very low doses it temporarily (middle of the night) reduces opioid receptors forcing the body to increase endorphin production to compensate. I'm still unclear how THAT normalizes thyroid, immune function, etc.
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