Low Dose Naltrexone

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LRDozier
Regular Member


Date Joined Nov 2009
Total Posts : 30
   Posted 11/6/2017 2:04 PM (GMT -7)   
I believe that I have finally found a doctor that I can trust to deal with me and my fibro (it's been a struggle recently). She has suggested that I take LDN or Low Dose Naltrexone. I just started my first dose last night after doing some research but wanted to reach out here. Has anyone tried this? If you have, what are your thoughts?

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 41827
   Posted 11/8/2017 3:44 AM (GMT -7)   
Make sure you don't take any opiates with this drug. It will send you on a vomit ride. I hope it works for you, but I am not sure how much it will help with the pain. I wish you the best... Let us know how it goes.

Hugs, Karen...
Moderator-Depression


fibromyalgia, Chronic fatigue, depression, allergies

Rockon
Regular Member


Date Joined Mar 2013
Total Posts : 328
   Posted 11/8/2017 10:39 PM (GMT -7)   
Hi there!
My first impression of what I was reading and watching about LDN was that it was positively affecting an immune cell called Glia. Glia are central nervous system and peripheral nervous system...I'm not positive, but maybe microglia are the ones in the peripheral nervous system?

(There is a woman in a YouTube video who goes through and explains the various roles of the different types of Glia. I need to watch it again. I only listened to it while in the bath.)
The best video I have seen about blocking toll like receptor 4 /TLR4 m!on Glia (which is what Younger says they think LDN does) is a lecture by Professor Linda Watkins to imaging professionals. I can get you the link if you like. It's a little long, but so good. On YouTube.
.

The theory is that Glia perpetuate chronic pain states by releasing mediators of inflammation. It's a low level inflammation,and does not necessarily turn up on everyone's regular type of blood work, meaning not everyone with inflammation would have a high CRP (c reactive protein) or SED rate. The rate at which the proteins in a tube of blood settle to the bottom. It's also called erythrocite sedimentation rate, or ESR...same as SED.

There are some small fibro/LDN studies by Jared Younger and his associates. I think Mackay (Mackey?) was also on the team's very first one, a tiny pilot study of only maybe nine patients. Then they did a follow up....also small. They realized when they looked at all of their data at the end, that the fibro patients with a higher SED rate at the start had a better response to LDN than others. I figured if they did another, they would measure SED and maybe other inflammation markers both before *and* after LDN therapy.. They didn't measure after treatment.

Then Younger took some team members from #2 medical center Stanford, and took Univ of Alabama up on an offer to start a new Neuroinflammation Lab, doing research only. I'm not positive that Parkitney is at UAB (Birmingham, Alabama USA), but in an email Younger wrote about the third (small) fibro and LDN study. Maybe Cort Johnson has blogged about it...seems to be a vague memory I have.

If you use LDN, and have Hashimoto's, some autoimmune condition will improve, and hashi's is one. You have to know the symptoms of being hyperthyroid...if you get weird symptoms that are not Hypo symptoms, it may be that your thyroid hormone dose is too high for the improved you. I just told someone in yet another type of group about this. She had gotten hyperthyroid while on LDN, and needed a dose adjustment. No one had warned her.

At myPatientMatch there at least 80 reviews of LDN. perhaps mostly from ME/CFS patients.

I also see that some mast cell patients (over active mast cells) are finding it helps. I don't know if that's because Glia and mast cells are known to activate each other's immune response, or if LDN actually stabilizes mast cells, also.

I will also edit in another thread address.Pretty sure It will have links to the early Younger studies.

Edit. Here is a link. To find the Yonger studies real fast, I just added in a row above it that says
LDN ° LDN ° LDN ° LDN ° LDN ° LDN ° LDN ° LDN ° LDN ° LDN °LDN °LDN ° LDN
Jarred Younger
/www.healingwell.com/community/default.aspx?f=24&m=2756942&g=2756942#m2756942

And prolly go to the LDN "treatment" reviews (or find them at myPatientMatch. -.com... on your own) I know that we had a few trouble shooting threads there at myPM about tricks for getting around adjustment problems. But the site changed servers and old threads can be impossible to find some times.munlessmits me or my tablet? Possible. Maybe some of that into is saved in this HealingWell thread that I am gonna link to. At the link, skip down to the Younger/LDN studies. No need to read everything else. It's not that far down, btw.

I sure hope to see a review from you, at myPM, saying it went very well and was helpful. Oh yeah, the compounding pharmacy can be important. I see people saying they likeLDN from Skips Pharmacy. Cort Johnson blogged about that a few yrs ago. An MS group has a section on using KDN, and I saw people here liked Skips....maybe others as well. It's been a long time since I looked.

Oh now I remember that Cort Johnson did blog about that last Parkitney LDN study. He said Jared Younger said about it that prolly we not yet figured out proper dosingz so maybe the third study was a little disappointing.

I hope I don't have too many autocorrect and Rockon mistakes,mcuz don't want edit this.tired, tired, tired! So what's new? My horrid neighbors up above my apartment, lol.

The Linda Watkins' lecture I mentioned is here:
/youtu.be/KYyvEyroDgk scool

Post Edited (Rockon) : 11/8/2017 11:06:11 PM (GMT-7)


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 3051
   Posted 11/9/2017 9:11 PM (GMT -7)   
Hi LRDozier,

I usually post on the chronic pain board, but I just happened to see your post... Although I do not have fibro, I was on LDN for 2 yrs for complex regional pain syndrome (CRPS), which does have some similarities to fibro. I'm temporarily off of the LDN because of some recent surgery, but hope to get back on it soon. Overall, the LDN has worked well for me in conjunction with ketamine to control my CRPS symptoms. For me, it works much better than opioids or other more traditional medications for neuropathic pain ever did. Plus side effects are practically non-existent, and any side effects that you may experience (mostly insomnia) are usually transient.

I am lucky, though, in that my doctor is very experienced in using LDN, and even lectures to other doctors about LDN. He mostly prescribes it for CRPS, but also for some other neuropathic pain conditions (I don't know if he has ever used it for fibro, but my guess would be yes). Rockon is correct in that LDN is believed to work as a glial cell inhibitor. Glial cells are essentially "helper" or "supportive" cells within the CNS that have a variety of functions, including regulating inflammation and the immune response. Thus, inhibiting these cells reduces neurogenic inflammation within the central nervous system, and supports the immune system (hence what Rockon mentioned about LDN often improving Hashimoto's thyroiditis -- which is also something that I have personally experienced). In addition, LDN also also causes an increased release of endogenous opioids by temporarily blocking opioid receptors (sounds counterintuitive, I know), which also helps with pain.

Like Gettingby mentioned, one downside, however, is that you cannot take opioids in conjunction with LDN, as it will block the effects of the opioids, and put you into withdrawals (if you were on them chronically). So if you are considering LDN and are on opioids, you will have to stop them first. Likewise, LDN also needs to be stopped several days before any surgical procedures, as it can interfere with some of the anesthetic & pain relieving agents (again, mostly opioids). The one other major downside to LDN, is that it can take weeks to months (and apparently even upwards of a year in some people) to really start seeing any benefit. So you have to have patience and be willing to stick with it. But when it works, it seems to work very well. I will also say that LDN is NOT helpful for acute pain, as glial cell activation contributing to neurogenic inflammation & pain is feature of chronic, but not acute pain (hence why I'm currently still off the LDN even after surgery, as I had to temporarily go back on opioids to control my acute post-operative pain).

If you would like to do more reading about LDN, two good websites that my doctor suggested to me are ldnresearchtrust.org and lowdosenaltrexone.com. You also want to make sure that you are getting your LDN compounded by a pharmacy familiar with LDN (there is a list of reputable pharmacies on one of the websites I listed above), as what fillers, etc they use do matter. I use Belmar Pharmacy, which is one of the big ones for LDN. They are in CO, but will ship anywhere in the country (I live on the east coast). I also know that there is a research paper specifically about the use of LDN for fibro that is available on one of those websites, if you are interested.

Anyways, good luck with the LDN. If you have any other questions that I can answer, I'd be happy to help. I hope it helps! And don't get discouraged if doesn't work right away -- as I said, it can take a while to work, so you have to stick with it if you can.

Skeye

Post Edited (skeye) : 11/9/2017 9:35:19 PM (GMT-7)


Rockon
Regular Member


Date Joined Mar 2013
Total Posts : 328
   Posted 11/9/2017 11:27 PM (GMT -7)   
Thanks for the extra info, Skeye!!
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