Low Dose Naltrexone (LDN)

I often say that 1/3 of things I've tried related to my health has been helpful, 1/3 has been harmful, and 1/3 is a 'neutral' or 'I don't know'.  And sometimes, things that were helpful at first end up not being so helpful any more, either because of side-effects OR because in doing a 'functional medicine' approach and not solely 'mainstream, allopathic medicine', I'm taking care of underlying problems and therefore my wellness level changed, so then the need for the medication has lessened or changed.  

On the subject of low dose naltrexone, or LDN, there are tons of people who are tauting it as something on the HELPFUL list. So here is a topic for our Lumigrate YOUsers.  

It took years to find the 'chemical cocktail' that helped me a great deal to get things turned around, and then I started feeling adverse symptoms and would have to figure out which medication it was, then do the proper things to stop the medication in a safe, sensible way.

I've had to do the same thing as diet changes, with supplements, and just plain old time marching on (aging), or the seasons. Things are always shifting, and you have to stay tuned into things, mostly. 

LDN is one that I'd put in the 'not sure for me' (but makes a lot of sense in theory) category. So to offset that, I'm providing information below about some Facebook groups where YOU can go and see what people are saying who are 'into it', because it's clearly becoming a very commonly prescribed and consumed medication, with a LOT of demand from educated consumers. 

I became aware of the use of low dose naltrexone in 2004 when a physician I was going to, due to his special interest in treating complex disorders such as cardiovascular disease, cancer, and fibromyalgia/MS/etcetera with conventional and unconventional strategies, told me about it.  "Awareness" in that moment. 

"Outside the box" is where I've found the most benefit in turning a pretty difficult case of what was diagnosed as "fibromyalgia" and "chronic fatigue" around. Everything is outside the box at some point in time, everything that becomes the standard of the industry was, at one point in time in the past, 'discovered' when some person or persons put their heads together and looked 'outside the box'.  Some day LDN may be 'inside the box' of mainstream, conventional, organized medicine.....

I recall the nurse picking up the phone and calling a pharmacy in Florida to arrange for the medication to be shipped to me. I remember having been told the overview of what naltrexone had been used for typically and historically, in higher doses, and I remember joking about how the D.E.A. is maybe going to start a file on me -- Skip's Pharmacy -- Boca Raton Florida? Really?

Why something having to be done out of Boca Raton, Florida, of all places, why having to go so far away for this? I live in western Colorado ..... Hmmmm.  I was hearing Seinfeld episodes with his parents and their moving to Florida in my head.... Boca Raton.  It's just got a ring to it! 

It turns out in the Facebook group I refer to below of Julia's, the people there just love, love, love Skip, who participates in the group, and many get their LDN from there -- others go other routes, and there's MUCH to learn from these well-studied, proactive people!. He's one of my Facebook friends now. And is a resource if you're looking for information.  

I'd heard his interns will go over your supplements and overall medications you're taking for no charge.  And naturally they'd be a resource for providers who are looking for information about LDN, same as any pharmacy would be a resource for providers (and consumers).

Unfortunately, this was a provider who liked to try a lot of things at once, a new medicine, a new supplement, a new IV cocktail, and required visits every three months when you were really 'throwing the coal to it', in terms of addressing a complex case.  He ultimately made some of the best suggestions that made my condition overall improve drastically, but he also made two mistakes with medications with me, things that should not have occurred once I learned a LOT more about things.  But overall, I benefitted from the six years of treatment I paid for, as well as many other things many other providers suggested which helped, things which didn't, and some which harmed. I was doing SO WELL by 2007 and 2008, that I wanted what I learned to be available to people on the Internet, resulting in Lumigrate. 

In one of the less than good experiences I had with that provider, the problem was in part that a pharmacist didn't get involved, and this is where I learned the value of a pharmacist being involved.  I'd already come to rely upon the good pharmacists I'd come to know along the way, but didn't think about it when the doctor had free 7 day trial packs of a new medication from the drug company representative.  He didn't think about that I was on a high dose (his insistance) of a narcotic which had been working for me at a lower dose.  The statistics showed those who got better on average had 8 to 9 hours of sleep, but this didn't take into account I might need less than that and the problem with a huge dose of narcotics rather than half a huge dose was going to be worse than my getting six good hours of sleep instead of 8.  

Lessons learned the hard way, for me, and in the end was good for me to get the lesson.  The damage done from that mistake continued to reverse even after the year when the experts will say 'you'll have lifelong whatever symptoms you have still after a year'.  Which was valuable and I and attest personally to that now. I would reversed symptoms and be off of needing all things requiring a prescription, even thyroid hormone, by doing functional medicine.  

With functional medicine, you treat symptoms using allopathic or other more natural, holistic means as needed at the time, but put your attention on finding the underlying cause, and treating there.  I think LDN is a wonderful tool to use when needing to solve a symptom in order to get further in the wellness recovery.  (I put cannabis in that category, too, it can help people with symptoms and long term I hope they feel better and can therefore work at the underlying causes for the symptom better.) 

So when you see the Lumigrate YOU! model about YOU being the one that really has to be in charge of your health care and not be relying on the providers around you -- you pick them, utilize them, but rely on YOU at the end of the day. You're a team, use your team mates. Use your brain, use your intution, or 'gut' feelings about things, or whatever tools you have for helping you find if something's right for you or not.  Use social media groups which are of quality, I lead to that, below. THAT is how I came to appreciate what the YOU! Model demonstrates. And with LDN, there's a lot of variability in where it's obtained, so keep that in mind if you're researching and considering about it based on others' experiences.  

Notice that the model shows pharmacy / compounding pharmacy (in small letters, sorry if it's hard to read if you're on a small screen).                                                                                                                                                     

I'd not learned yet, in 2004, to really try to do just one change at a time so you know what the effects are. It was not long after I'd gone back in to this provider after my massage therapist saw the mass/goiter on my thyroid, which cued doing labwork on thyroid, properly, not just TSH which always came up WNLs for me. I'd started on supplemental thyroid hormone (porcine / Armour). I share this to encourage everyone and remind that we are all learning all the time, and we can do better by sharing our histories for others' benefit to learn faster and easier. 

I was also needing a hysterectomy and that hadn't been all worked out yet either as, at that time, I was going to a specialist for that who wasn't knowledgeable at all about fibromyalgia and uterus'; in the next year I found another gynecologist who had expertise specific to FM and about a year after I trialed the LDN, the hysterectomy was performed, which was a huge relief to many general and specific symptoms.  In other words, I was a mess and at the time I tried the LDN, and I was not yet with the overall team of providers and me knowing how to best use the ones I'd kept helping me; I was still weeding (I'd moved to the area January 2004).  

I want to remind people how many different areas and systems of the body become affected by what can be diagnosed as "fibromyalgia".  (In my case, low progesterone meant the estrogen dominance caused fibroid tumors, for instance, and it was too bad that my 1996 provider had quit medicine because she had me supplementing progesterone with a topical, compounded, biologically identical from a quality compounding pharmacy in Colorado Springs, Colorado (I lived in Fort Collins, Colorado at the time and ironically would end up getting a job across the street from that pharmacy in my career path which took me all over Colorado as an OTR).  

What a 'goat rope' it can be to get your time, energy, and money together to make the rounds to the providers who eventually can help you, ideally. Much about all that cause/effect stuff in other topics at Lumigrate, please look around, I hope it will help your efficiency with finding solutions. Many who need the help of providers the most are struggling financially and it's a major effort to come up with the funds to go to the provider, get their energies up for the appointments and things they have to do as a result (testing, obtain products, etc.).  But they're motivated to do what I did, to FEEL BETTER.  To reverse the symptoms enough to be able to do MORE, and it is a spiral. Onwards and upwards!

Now LDN has been studied, and there's a nice, clear abstract at PainMed.org, at the following link. Please go and read it, just remember to come back to Lumigrate.com and continue learning here if you've liked what we set you up to learn. ~~ Mardy

www.painmed.org/2012posters/abstract-251/

Update from July 2014 -- I want to thank someone with chronic pain I was connected to via Facebook. This person, who is a wonderful resource, very diligently doing homework about the illness as if it were the 'job' they cannot work full time anymore, has a fibromyalgia diagnosis. And they shared with me this winter and spring the difficulties they have in obtaining the desired LDN through their health care system. This is a person in one of the other western, English speaking countries of the world, outside the United States.  

I was aware that this was a topic on Lumigrate which I really could not offer anything that they didn't already know, because I'd provided about the most basic of information. 

So today I wanted to add some information about resources that I did find that I would feel very comfortable with linking you and connecting you to, which is ultimately what Lumigrate 'does best'. Hopefully it increases your chances of a good outcome with your time studying and being the proactive patient YOU! are. 

From Facebook, I would suggest the following group: LDN Research Trust

Here's the link: www.facebook.com/groups/LDNRT/10152943383044045/

They had 6,800 members when I joined. This is the About information: 

---

 

TO RAISE AWARENESS OF LDN
To help people with all autoimmune conditions. 
To raise funds to enable LDN to be clinically trialled. 
To ensure that LDN can be made readily available on the NHS.
LDN (Low Dose Naltrexone) has been used successfully in the treatment of autoimmune conditions since 1985. This safe, inexpensive, generic drug could potentially treat 100,000's of those who suffer from life limiting conditions such as MS, Cancer, HIV/AIDS, Fibromyalgia, Autism, Crohn's, Parkinsons, Bipolar Disorder, Alzheimers and many more medical conditions.
The LDN Research Trust is a non-profit making UK registered charity, run solely by volunteers who are all working towards making LDN available to everyone who could benefit from its use.

YOUR SUPPORT IS GREATLY APPRECIATED 

Thank you

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And within a very short period of time, and over the course of the day, this very lovely welcome and tagging of admins of the group occurred. I'm going to just call them by their first initials of their first names here since I'm just wanting to show how welcoming and 'on it' a well run group can be. 

 

A: Hello and welcome to the group. Are you taking LDN?
Please read through our “Files” section (top of page) for lots of information and feel free to ask any questions you might have. You can also join our Forum.http://forum.ldnresearchtrust.org (Registration Question = UK)

 

Mardy Ross No, but 10 years ago I was prescribed LDN. In (a FB group I was working in last night) I was provided this group as a suggestion by FB, and I saw several of my FB friends who also have an interest in 'fibromyalgia' were in the group so I figured I would ask to join. Thanks for the add.

 

A: you are welcome, glad you have found us and that several of your FB friends have joined already, Over time I am sure you will see several comments from people just starting or long term users of LDN for fibromyalgia, It maybe of interest to watch some of this video  

 

Fibromyalgia - LDN Aware Interviews - Low Dose Naltrexone

www.youtube.com

LDN users talk about their experience of taking LDN for Fibromyalgia

 

B:  Welcome Mardy Ross! Glad you are with us! I am tagging one of our Admins, C; she may have some feedback for you on Fibro. 

B Tagging C 

 

C: Welcome, Mardy Ross! I am so happy that you and several of your fibro FB friends have found us. I have had fibro for over 37 years - and I will add that I had horrible pain the entire time. LDN has been a godsend and provided tremendous pain relief ...See More

 

Mardy Ross Thank you, and 37 years makes you one of the very old-timers at this, doesn't it? I was 17 then and was in a phase with the symptoms that were not anywhere near recognized to be what they were caused by, nor how they were connected. But thankfully I've...See More

 

A: Tagging D: 

D: Sounds like you will be a "perfect fit" here Mardy!  Looking forward to future information sharing and conversations.  Please send me any & all information you'd like to share.

Mardy Ross Yes, thank you, it seems so, and I will do. Please do the same with me, either PM on FB, or the contact us comes to me from the website, as I'm a one woman operation.

 

And we followed up privately or more on that thread in the group. So I thought it was a really great example of how Facebook is such a resource for people with medical concerns who are searching for information and communing for questions, answers, resources, support, etc. 

One thing leads to another --- as YOUsers of Lumigrate know, I try to teach people in many of the topics how I 'do what I do' in case there's something they can learn and then be more effective and efficient independent of Lumigrate and my suggestions. (Not that I don't love having you turn to us, I just want what's best for YOU, which is to be expert and as independent as possible at it! I'm an occupational therapist in my background, you realize, we're 'all about' helping people get as independent as possible, including with their health information and detective work, in my case!)

So while in this FB group about LDN Research Trust, FB suggested other things, and one had an eye-catching title about endorphins and naltrexone. AND I saw a familiar face in the little box of 'who you know who is in the box', so I clicked on Join Group. And pretty soon I had a lovely private message from the familiar face saying she's an admin on the group and inquiring and being pleased to get the email that said I'd requested being added to the group.

So, to go on sharing about my pleasant experiences about Facebook related to just the little piece of the health care pie of LDN, I'd connected with wonderful woman who had written a book about LDN, based upon what she learned from her husband's long-ago medical issues. Here's Julia Schopick's information: 

• Website: http://www.honestmedicine.com/
• Facebook: julia.schopick@facebook.com
• Book (Honest Medicine) at Amazon: http://www.amazon.com/gp/product/0982969007

And Julia currently is an administrator on this other really neat lookign group at Facebook, titled Got Endorphins.... This is what their information looks like: "Hello and welcome to all the new members! GOT E's great for support with caring people! Below will be links, videos and comments to review, but if you get time please check out the file section link is right under cover photo. Also if you don't want to get any auto generated emails please click on the notifications next to the file section and check OFF. Start a new thread and please introduce yourself if you want to and tell us what your illness is and if you are on LDN.. .. Dr Barhai's wife Jackie said something in an interview with the LDN TRUST that sticks to me even today.. "its not the amount of LDN you take, its how your body reacts to the amount of LDN you take" Watch this video first chance you get http://www.tv2.no/v/717059/"