Tentatively Ecstatic! My Experience With Low Dose Naltrexone Part 1

I was in a painful flare and starting to get desperate. Although mindfulness and meditation help, I felt like I couldn't continue to push through.  I cried. Hard.  Sobbing and shaking. Which isn't great when you're already in pain.  "This is too hard!"

My husband calmly said as he caressed my hair and massaged my temples, "You can do this.  You are strong."

The next day, I messaged my general practitioner. He's been very supportive, albeit not very familiar with Fibromyalgia (as are most doctors). I decided to finally ask if he would prescribe me Low Dose Naltrexone (LDN). After reviewing my request and the link to research on the topic, he tentatively agreed to give me a month's dose, stating that the research, while promising, was small.  When I responded (via messages through MyHealth.Spectrum.org) thank you, I would like to try 2.0mg dose.  He was a bit flabbergasted. "It's only sold commercially in 50mg tablets. Do you know how to get that low of a dosage?"

This is when my online Fibromyalgia support team has been essential.  Through my research and their input, I knew more about LDN than my doctor. I first learned of LDN from Donna, on her website Fedup With Fatigue.  She gave me a bit of guidance on the dosing and titration that she followed because I knew the 4.5mg was a general ending goal, not a starting point. She also gave me a wonderful resource of knowledgeable people all finding their own way with taking LDN via the Facebook group: Low Dose Naltrexone for Chronic Illness and Infections. Brian Haviland, the administrator of the group, and several members have given me good information on how to proceed. 

Starting Dosage

My general practitioner has no experience with LDN dosing (because this is off-label for Fibromyalgia and most other issues it's being used for-more on why below).  I sent him research reports on the topic and he then wrote a 30 pill prescription for 4.5mg. Being it has to be filled at a compounding pharmacy, I had them send it via fax to a compounding pharmacy in the city about an hour away from us.  As kismet would have it, the pharmacy technician that I spoke to, had been taking LDN herself for a while to help her manage Lyme disease.  She was very positive about her results. She was the one that suggested that I go with 1/4 the dose. So, I began at 1.125mg.

How to Adjust LDN Dosage Level

Due to LDN being commercially sold at 50mg tablets and even the low dose level many get compounded not being the level the individual can handle (like mine of 4.5mg), those who are in the know have developed an ingenious way to adjust dosage level.

Here's what I've done (on guidance).  I put 4 ounces of distilled water (ml is fine, too, but I live in the USA, so...😉) into a jar like the one shown above.  I opened the 4.5mg capsule and poured the contents into the water.  I, then, stirred to dissolve it, letting it sit a bit, covered in the refrigerator before taking it the next morning.  

In the jar, at the bottom of the solution are white particles that don't dissolve.  These, I've found out, are the filler in the capsule.  I asked the compounding pharmacists what type of filler was used in my capsules.  He responded, "Avicel.  It's a filler with low allergy issues." I'll talk more about fillers in future posts in this series on LDN because this can be important.

To get the dosing amount you want, you have to do a bit of math.  With 4 oz of water added to 4.5mg of LDN, if I take 1oz of the solution, I am getting 1.125mg (4.5/4).  However, you could have 4 cups of water and drink 1 cup for the same 1.125mg.  Make sense? (Thanks, hubby/math-guy for the lesson.)

Click this link for a larger view of the

 chart created by Haviland 

LDN Facebook Group Administrator.

My Initial Reaction

Three days in and it became apparent that I had too high of a dose at 1.125mg.  This is definitely an individual thing, and one has to find their own path with the information given by others.  Some can start with 4.5mg and have no side-effects from the get-go.  Some, can start at 2mg and bump up every few days until they get to 4.5mg.  (I will be explaining that while 4.5mg has been the treatment level most researched; it's not the optimum level for all people.)

Feeling terrible, I stayed in bed
for 3 1/2 days straight.
Cold packs on my head and the back
of the neck helped some.

And so, I was not going to fit into the "normal reactions" group (surprise, surprise). I was so dizzy, weak, nauseated, and a contraction type of headache at my temples and forehead.  For 3 1/2 days, I was in bed.  I threw up several times (which is difficult for me to do because I had the Nissen procedure of GERD that created a knot at the top of my stomach) and didn't even want to drink water.  I was ready to give up.

Luckily, I had the FB LDN group.  They gave me encouragement and advice. I decided to press on. 

I really am appreciating
all the support and advice
I've gotten prior and during
this first couple of weeks.

One suggestion that I latched onto was to take a day off to "clear the receptors" and then, start back up on a MUCH lower dose of 0.25mg.  And this is what I did.

I still felt horrible all the next day (day 4) without taking any LDN.  The following morning (day 5), I wasn't nauseous anymore but was very weak and tired.  With the words of supports in my head and the knowledge that if I don't push through I will never know if it works for me, I took 0.25mg.  

To do this, I dissolved one 4.5mg capsule as described above, but this time, I added it to 9oz of distilled water.  I then took only 0.5oz of that solution, carefully drawing off from the top as to avoid getting any of the Avicil filler that was resting at the bottom of the glass jar.  The math for this is 4.5/9=0.5mg per ounce/2=0.25mg.  

It was a grey day outside, so I gave myself the grace to lie around one more day.  I meditated lying prone in bed and fell asleep on and off until 4pm in the afternoon. And then, it all passed.  I felt as if a switch had been turned on, I had recently watch Back to the Future and envisioned my reaction to being much like Marty Mcfly's coming back from nearly fading away into nothingness.

Much like Marty, I was not able to function,

and then, wham! I was back!

Who is This?

That night around 8pm, I got a burst of energy.  I cleaned up the kitchen which had a pile-up of dishes, folded the laundry that had been sitting in the dryer for a couple of days, and finished writing my first post in a series I'm planning to write on teachers and stress. My husband, who had been working hard all day putting up drywall, was winding down on the couch, reading.  He looked up as I was scampering around the house. Smiling, he said, "Who is this? You're feeling better, I see."  That night, I struggled to fall asleep but wasn't feeling bad about it.  I finally drifted off around 2am.  

I've come to appreciate the
utter love this guy gives even
when it means I get woken by
a wet nose every morning.

Around 6am, Scout, my tiger cat began his ritual of nuzzling my ear, then cheek, then hovering close enough to my lips that I can feel his breath on them.  My husband had already gotten up, so I was there alone for Scout to pester until I was fully awake.  This is early for me.  7:30am is my goal time for getting up and around, but Scout wasn't having any of that this morning.  And to my surprise, I woke up alert.  I was able to bound out of bed pretty quickly, feeling very little pain and stiffness that I normally have every day.

I was able to complete some blogging work, straighten up the house a bit, and when my husband asked if I wanted to go for a hike in the woods, I had the energy to say, "Yes!"  We went on a four-mile hike.  The sky was blue with white clouds and the forest world seemed as if it was awakening from the cold of winter, finally. It felt so wonderful to be outside, hiking, talking with my hubby, and having next to no pain.

Getting out into nature
is my healing place,
especially now that we're
warming up and getting
some sunshine.

I had two more AMAZING days like this.  My mood was up, my energy abundant, very little pain (until evening, but not bad-level 4). I was able to get myself ready (shower and even a bit of make-up), practice yoga and meditation, straighten up the house, practice my guitar, socialize with Zooming and a bit with the neighbor (at safe distancing), rake up our shoreline of layered wet, oak leaves, and then still have the energy to sit in the hot tub with my husband. To top things off, we had a warm-up to 55o and sun which is a commodity that's fairly rare right now in Michigan. These were three AMAZING days for sure.  

Each of these three nights, though, I struggled to get to sleep.  I didn't feel agitation or racing heart or anything, but I felt clear-headed and alert.  I ended up taking THC oil (2 drops sublingual) and with meditation, I fell asleep decently at midnight (headed to bed at 10pm) and slept until 7:00 (when Scout begins to wake me up). Each of these awesome mornings, I woke up feeling clear and energetic.  My pain was noticeably more intense and in more areas than normal (Level 5+). However, not long after taking my 1/2 oz LDN solution, it diminished to a level 2+.  I was ecstatic at how I was doing and couldn't stop telling everyone. This, I feel, might bring me back to a level I didn't think would be achievable.

The end of my raking the
shoreline day,
it was sunny
 which made me
even more joy-filled.

When researching more about why and how this works, I found an explanation that made sense for all these improvements. "The major mechanism of action of LDN involves blocking the body’s opioid/narcotic receptors for just a very few hours (rather than the all-day blockade caused by the 50mg dosage). Those are the same receptors used by the body’s endorphins. The body responds to this by greatly increasing its endorphin production, and those higher levels last all day -- far after the blockade by LDN has ended. Endorphins turn out to be the major normalizer/upregulator of one’s immune system," states David M. Gluck, MD in My Experience with Low Dose Naltrexone.

Tentatively Ecstatic

After a three-day wonderful weekend, Monday morning came with more pain and a feeling of fatigue. Taking in that I had done a decent amount physically over the weekend, I chose not to be discouraged.  Besides, I know that at 0.25mg, I'm not yet at my personal "sweet spot" dosage level. So, I took it easy: blogging work, Yin Yoga with Bernie Clark via Gaia.com. Tuesday and Wednesday of this week were pretty much the same but less fatigue and more clear-headed. 

Today, I skipped my 0.25mg does as they suggest to clear the receptors. "It makes sense to skip a day of LDN every week to keep it working effectively. Otherwise, naltrexone and its active metabolite 6-β-naltrexol will slowly build up in the system to an ineffective level," states Richard Farr, a member of the LDN Facebook group. Then, tomorrow, I'm going to up my dose to 0.5mg. I'm planning on staying at this level for one to two weeks (deciding based on how I'm doing day 8 at this level). 

Why Isn't this prescribed more readily?

If this Low Dose Naltrexone drug is so effective for Fibromyalgia (among many other issues), then why isn't it approved by the FDA and paid for by health insurance?  Why aren't doctors more learned on the subject, and why aren't they prescribing it more readily?

The answer, unfortunately, is money.  Naltrexone has been around so long that it is considered generic.  Because of this, Drug companies can't make any money off of it. Dr. Gluck goes on to explain, "Because naltrexone has been a generic drug for many years now, no large pharmaceutical company will invest any money in the large research costs needed to gain FDA approval of these special new off-label uses of the medication. No one makes any significant money from sales of LDN! Nonetheless, there have been many small clinical studies of LDN performed at outstanding medical centers, all showing it to be safe and effective. Check my website for detailed information on the research [www.ldninfo.org/ldn_trials.htm]."

And so, I'm tentatively ecstatic to think that I may be able to get back my energy, clear-thinking, and have less pain.  That I might be able to actually count on mind and body on a regular basis instead of it feeling like every moment is a  roll of the dice. 

I will be keeping you updated on my progress.  I will not gloss it over.  If it doesn't work, I'll let you know.  Have you ever heard of LDN?  If you take or have taken it, what was your experience?  I'm especially wanting to hear from those who have taken it long-term, say 5 years+. I'd love to hear from you. I'm learning as I go.

Thank you for visiting my blog today. 

I am committing to posting once a week on Fridays.  

However, as you know, my new normal means that sometimes 

I have to listen to my body and am not able to follow through 

as planned. Thank you for your understanding.

Click link Subscribe to Pain FULLY Living Weekly Posts by Email

One Step at a Time

Beautiful Manistee River from NCT
near Mesick, MI.

6:15 this morning, Scout, my grumpy-old-man orange tabby, is stepping on my head as I begin to come out of another dream that involves my alter-ego desperately racing through a maze of sorts (need an analysis of this 😄). As soon as he sees some consciousness from me, he begins to pleadingly meow for one of us to get up and feed him-thanks to his hyperthyroidism-getting old is tough even for him. 

As the dream seeps out of me, the reality of my body pours in. This is every morning. Every morning when I feel swollen-filled up with wet sand in my arms, hands, legs, and feet. My body talks to my mind and says, “I don’t want to move. I don’t want to get out of this bed.” It’s a pleading that I spend one half to an hour every morning arguing with. Over and over I say to myself, “Get up. You have to get up.” I’m shooting for 7:00 to 7:15 each day, so that I stay on a routine for sleep. Sometimes, I get up and after a pee and brushing my teeth, I head to the kitchen to take the medicine and supplements that have helped me forge on. (I will post a list and reasons why soon.) On really bad mornings, I beg Kelley (who generally is already up having his morning coffee and getting caught up on what’s going on in the world) to bring me my meds. Generally, it takes about 30 more minutes for things to kick in, and I’m ready to move.

Difficulty Committing

Today is a special day. I signed Kelley and me up for a group trip of hiking and kayaking. It’s the first such commitment I’ve made like this since being hit with Fibro and have actually followed through on. Friends, colleagues, and family know that since September 2018, I haven’t been a woman of her word. This has been really devastating for me. That has always been my motto- What I promise is what I do. However, I have canceled on commitments so many times this past year, I am now hesitant to prearrange anything at all. 

But my heart, my longing, is to do the things I love: hang out over drinks with friends to talk, laugh, and cry, go for a walk in the woods, go to yoga class at 8am (would love to do the 5:30am, but not sure that will happen), commit to a new job, volunteer regularly, learn to play the ukulele at Thursdays Flybear Bookshop class, get down and play like a kid with my grand-daughter, Copeland, and so much more. The months of September through February found me mostly in my bed. December 7th was my first day of long term leave from my teaching career of 32 years. Those first few months, I barely did anything but try to be comfortable with heating pad, fuzzy blanket, pillow props, pain reliever, and sleep. I’d hear Copeland laughing and talking with her parents and Kelley in the living room. I’d drag myself out of bed determined to play, too, but soon realized that even just sitting in the chair was just too much for me. I’d slump back to my bed, many times crying uncontrollably for the loss I felt. I felt imprisoned in my own body and couldn’t see any way out of it.

The most debilitating part of Fibromyalgia for me has been the “Fibro brain fog” and the draining of ALL energy. (In a later blog entry, I will talk about what I’ve come to understand about why this happened to me.) In bed, I’d often find myself in a hurtful position and would stay there trying to convince myself to move for several minutes. It just seemed too hard to adjust how I was laying. The brain fog made it impossible for me to really attend to reading, writing, talking. I did start listening to audiobooks which helped me weather the worst of things. This time led to a deep sadness; I never wanted to use the word depression, but that’s what it was (and still is at times). 

Showing Up, Anyhow

This morning, as the rain poured down outside our bedroom window, I reviewed every possible way of canceling (once again) and just staying home. Knowing we had to be ready to leave the house by 8:15 (with all the packing for the day still to go), I was really close. However, my search of the Weather Channel App showed that Mesick wasn’t going to have rain all day. I also thought about the work Kelley had already put into getting the trailer and kayaks ready to go last night, and the fact that this new like-minded group in our area of Newaygo County would be really good to get to know. If I canceled this time, how would I be able to show my face at another time after all the planning and communication that went into this trip? And so, as Kelley woke up and went to feed Scout and Willow, I did my morning routine (well enough to go get my own meds this time). 

As I sit in the car writing this entry on our way to meet up at Manistee River Launch-Hodenpl Dam, my body is again pleading with my mind and heart. “I can’t do this! I’m not up for a four-mile hike and then kayaking down the Manistee. Can’t you feel the sand-filled, noodly arms and legs?” Yes, they both reply. But, I’ll open the door when we get there and step out into the dirt road, smiling at Mike who will be driving us up to the trailhead. One step at a time and soon I know I’ll be feeling strong again. Just hard to convince my body of that. 

I will write in an upcoming blog how I’ve gotten to this point; many, many nurturing supports. Certainly, not my willpower. I have come to celebrate my strength and courage, knowing that it’s fed and cultivated one supported step at a time.

***

What a wonderful day spent with wonderful people:)

After the Trip Update

We’re home at 8:58! Wow, that’s a long day for me. However, I’m feeling happy and energized. The day was perfect and the group of people- wonderful. I felt connected with “my people” right away. Soon after stepping out of the car, I was able to “turn on” and the pain and weakness soon went away during the walk. I had little noticeable pain through the 4-mile hike and most of the 10-mile kayak. Towards the end, I had to do my stretches (I’ll get into that in another post) because my neck and shoulders were seizing up. However, at the end of the trip (at Red Bridge which is really white in color), we were met by a stiff gin and tonic with lime. That made all my stiffness go away😊 Now for some sleep (hopefully). 

How do you handle commitment when you're not feeling so great? I sure would love to find a way to determine when it's good for me to push myself to show up and when I need to pull back.

Thank you for visiting my blog today. 

I am committing to posting once a week on Fridays.  

However, as you know, my new normal means that sometimes I have to listen to my body and am not able to follow through as planned. 

Thank you for your understanding.

Click link Subscribe to Pain FULLY Living Weekly Posts by Email