Low Dose Naltrexone at the Forefront: The LDN Trust Conference of 2016

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Edging Into the Mainstream
Low dose naltrexone (LDN) is slowly edging into the mainstream. Strong patient reports plus some small studies have made LDN a hot item in many disease communities. A book is about to be published and a standardized compound is being produced for studies. The field is slowly but surely moving forward.
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Recently, the SMCI's Biovista drug repurposing project gave a LDN another boost. It's massing data mining analysis of thousands of drugs gave low dose naltrexone drug combination the top score (out of thousands of drugs) in potential efficacy for chronic fatigue syndrome (ME/CFS). (Could we see an NIH sponsored LDN ME/CFS trial?)

(Please note a mistake in the last blog; the Solve ME/CFS Initiative did not, as a Wall St. Journal article reported - and I repeated - spend $250,000 on the Biovista project; it spent much less.)

LDN's not mainstream yet but it's getting closer and this year's LDN Research Trust Conference in Orlando, Florida shows that. The success of a conference depends on its speakers and the speakers are getting better.

Talks

The top of my list of this three day conference would be:
  • Jarred Younger's talk on day two not on LDN and fibromyalgia or ME/CFS but on "Calming microglia: a future method for treating multiple sclerosis." Calming the microglia is something of obvious interest in ME./CFS but Younger, a very insightful guy, apparently has some insights on LDN's effects on MS he wants to impart.
  • Right on the heels of Younger's talk is a not to be missed. Skip Lenz, pharmacologist and founder of Skip's Pharmacy is something of a legend in LDN circles for his ability to compound LDN effectively. He'll be reporting on the results of a study of LDN's effects.
  • A couple of hours later Dr. Holtorf, an authority on hypothyroidism will speak on ME/CFS treatments. I found his talk in the last Conference really intriguing. Among his many interesting points, Holtorf said he found a blood thinning drug to be really helpful at times. That's not an approach you'll get from many other doctors.
  • Dr. Padrep Chopra's talk on using LDN for chronic pain has obvious appeal
  • Dr. Shulman's report that he finds LDN helpful in the treatment of sexual dysfunction should perk up a few er...ears. Shulman is a psychiatrist who combines medications with vitamins, supplements and reflexotherapy.
  • Dr. Armin Schwarzbach, a German doctor, will give his thoughts on a subject many are concerned with - Lyme disease and how to effectively test for it.
  • Stephen Dickson's talk on how LDN is absorbed and metabolized will provide some cautions with the drug for those using it.
  • Feeling anxious, hypervigilant or having sleep issues since you came down with ME/CFS/FM? (Yes, to all three for me :)). Galyn Forster, MS will talk how using LDN can reduce anxiety, hypervigilance and help with sleep.
Many other talks are scheduled on other diseases and other topics. Check out the schedule here.

THE LDN Book is also being launched at the conference. It will provide a "comprehensive resource for doctors, pharmacists, and patients".

Viewing the Conference

The conference runs from Feb 19th - 21st in Orlando, Fl. If you can't attend you can view a live-stream of the conference for $55. Find out how to do that here.

Besides the information you can get at the conference attending simply supports a good cause. LDN, like ME/CFS and FM, is working to breakthrough into the mainstream. The sooner it does that the better. The LDN Research Trust is at the forefront of making that happen.

Health Rising does not receive any funds from live-stream or other sales.
 
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dee

Active Member
I took LDN and for 2 months and felt so good I was happy again! 2 months later it stopped working. I was told to start at 1.5mg. for a couple weeks then up it but when I tried to take it again hoping so much to feel good again, I felt worse! anyone know WHY? I want to feel GOOD again!
 

Prashanti

Member
I took LDN and for 2 months and felt so good I was happy again! 2 months later it stopped working. I was told to start at 1.5mg. for a couple weeks then up it but when I tried to take it again hoping so much to feel good again, I felt worse! anyone know WHY? I want to feel GOOD again!
I noticed the same thing. I have taken LDN for several months now. At first I felt I had my life back again...more energy, elevated mood, better sleep less pain. Then it leveled off and back to where I began EXCEPT I do have less pain...so much so that I had forgotten how the pain was.
A specialist in CFS told me that some patients have to go up to 9mgs (I am at 4.5) or they need to stop it for awhile and then go back on the LDN.
Does anyone else have the same reaction?
 

Prashanti

Member
I noticed the same thing. I have taken LDN for several months now. At first I felt I had my life back again...more energy, elevated mood, better sleep less pain. Then it leveled off and back to where I began EXCEPT I do have less pain...so much so that I had forgotten how the pain was.
A specialist in CFS told me that some patients have to go up to 9mgs (I am at 4.5) or they need to stop it for awhile and then go back on the LDN.
Does anyone else have the same reaction?
I forgot to mention that I have had the same process with other things...like B-12/methyfolate shots.....started out great then leveled off to seem to have no effect.
 

Who Me?

Well-Known Member
@Cort. Great news. What I'm wondering is if they come out with specific dosing, that has to be much more expensive then getting the 50 mgs and making your own custom dose. Hail to big pharma.
 

Who Me?

Well-Known Member
I hadn't thought about it, but I naturally was more active as I was able to be....it was such a relief. It wasn't a huge increase, it was just that I could function like a normal person for awhile.

I have more energy too, but it's not a speedy kind of energy. The problem I think though is at some point it catches up with me.

I'm finding that there is no consistency from day to day with how I feel with the LDN. I have a lot of pain today and no energy. I'm hoping it is because I've doing too much.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
The company making the standardized version did say they would keep the price low - they mentioned a very low price. I'm sure there will be a cost to it though. The good news is that if treatment trials are successful you'll always have the option of buying the cheaper stuff.
@Cort. Great news. What I'm wondering is if they come out with specific dosing, that has to be much more expensive then getting the 50 mgs and making your own custom dose. Hail to big pharma.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
It's not to know without studies. If LDN is blocking the microglia, though, when it works it could be turning off a bunch of different symptoms from fatigue to pain to sleep issues.
 

IrisRV

Well-Known Member
I took LDN and for 2 months and felt so good I was happy again! 2 months later it stopped working. I was told to start at 1.5mg. for a couple weeks then up it but when I tried to take it again hoping so much to feel good again, I felt worse! anyone know WHY? I want to feel GOOD again!
I had to start very low and increase a small amount every week or two. At the beginning, every time I increased the dose I felt worse for 3-4 days, but then I felt better. It wasn't easy getting up to full dose. Once I was at 3.5 mg (I think), I could increase the dose without feeling bad.

I was at 4.5 mg for about a year then my doctor increased me to 9.0 mg. I started out splitting the dose, but I can't take it in the morning, the endorphin crash is too much for me. I need to take it before bed so that the endorphin crash happens when I'm asleep. I take sleep maintenance meds, so maybe that is why it doesn't give me trouble with sleep. We are all different. For me the biggest improvement was in cognitive function, although I have had a general mild overall improvement also.
 

Who Me?

Well-Known Member
I've had been in major pain for 2 days after upping to 2mgs am. and then another at 1 pm. I dropped back down to 1.5 mgs a.m. and feel SO much better today. I think the problem was I just went from 1.5 up to 2 to 3 without steps in between.

@IrisRV I was having that huge morning crash too but once I found the right time I got passed that. I usually get energy from it to take at night.

My problem is now I start fading around 5 or 6 and the pain really kicks in. I'm going to add an afternoon dose, and see if that gets me through till about 8.

Anyone have a good syringe with easy markings? I'm using a 10 ml now but want to get a 3 or 6 ml.
 

Who Me?

Well-Known Member
I dropped down to 1.5 mgs and my pain level is so much better.

I'll stick with this and slowly go up in smaller increments.
 

IrisRV

Well-Known Member
I've had been in major pain for 2 days after upping to 2mgs am. and then another at 1 pm. I dropped back down to 1.5 mgs a.m. and feel SO much better today. I think the problem was I just went from 1.5 up to 2 to 3 without steps in between.

@IrisRV I was having that huge morning crash too but once I found the right time I got passed that. I usually get energy from it to take at night.

My problem is now I start fading around 5 or 6 and the pain really kicks in. I'm going to add an afternoon dose, and see if that gets me through till about 8.

Anyone have a good syringe with easy markings? I'm using a 10 ml now but want to get a 3 or 6 ml.
It shows how we're all different. LDN doesn't give me the slightest immediate energy boost. I could take it right before bed and be fine. I take it about dinner time though to make sure the endorphin crash is over before I wake and the endorphin rebound is kicking in.

I wonder if part of the reason for our differences could be in what the LDN is doing for us. I don't have pain anymore (Valcyte took care of that for me), so LDN is not helping me there. My doctor prescribed it for the anti-microglial/anti-inflammatory effects. For me it gave a more overall improvement -- better cognition, somewhat more energy/stamina. I'm waiting to see if any of my inflammatory markers have changed.
 

Who Me?

Well-Known Member
It shows how we're all different. LDN doesn't give me the slightest immediate energy boost. I could take it right before bed and be fine. I take it about dinner time though to make sure the endorphin crash is over before I wake and the endorphin rebound is kicking in.

I wonder if part of the reason for our differences could be in what the LDN is doing for us. I don't have pain anymore (Valcyte took care of that for me), so LDN is not helping me there. My doctor prescribed it for the anti-microglial/anti-inflammatory effects. For me it gave a more overall improvement -- better cognition, somewhat more energy/stamina. I'm waiting to see if any of my inflammatory markers have changed.
When I took it last year at 8 a.m. I got zero benefit. And when I first started again a few weeks ago I was up and out of bed by 7:30. I couldn't believe how good I felt. But I crashed about an hour later on the sofa. Then early evening the pain came back and I could barely keep my eyes open.

My pain is very odd and nothing I've tried ever got rid of it, so I never really knew what was causing it. I also had been feeling like I couldn't breath for almost 2 years. After testing positive for IgM for mpn and starting abx that helped, but again, LDN really took that relief up another notch. So that sort of clarified to me that my fog/breathing/pain is neuro and inflammation. I am also going to experiment with a small dose in the afternoon to avoid the pain kicking in (like now)

I haven't had a doc who understood what was going on so I have not been tested. This is all subjective based on how I feel and the relief I get from the LDN which I never got from anything else before. Hopefully the Clinical Immunologist I'm seeing in April will be able to help with this.

The current issue, which I don't know is related to LDN is sleep. I used to wake up at 3 a.m. but could get back to sleep. Then a few months ago I started waking at 4, and once that happens nothing I do will get me back to sleep. This was happening before LDN.
 

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