Interview with Linda Elsegood of LDN Research Trust

Interview with Linda Elsegood of LDN Research Trust

As you probably have guessed, I am not a trained medical health professional. What I am is a mom, a mimi, a retired teacher, a lover of nature and of music, as well as, someone living with chronic illnesses. I share my journey to provide some insight and hopefully ideas that may be helpful to others dealing with similar issues. Always, consult with your doctor before trying anything new.

Linda Elsegood is one of my chronic illness heroines! She is the founder of LDNRESEARCHTRUST.ORG. Her wellness journey and discovery of the use of Low Dose Naltrexone (LDN) for her progressive Multiple sclerosis is nothing less than miraculous. Instead of going on with her life that LDN gave her back, she began a crusade to make LDN more known and provide training for both health care professionals (doctors, pharmacists, veterinarians, dentists, etc) and patients who live with a wide variety of chronic illnesses.

Linda’s LDN Experience and Founding the LDN Research Trust

As a young mother of two, Linda was a wonder woman. She worked full-time as a bank manager in addition to running her household. She admits, at that time, she took her health for granted.

December of 2000, a sudden phone call from her father changed everything. He told her that her mother had had a major heart attack. She rushed to the hospital, staying up 48 hours straight to care for her mother. Fortunately, her mother survived, but it meant that Linda (an only child), had that additional responsibility put on her. She also had to go straight back to full-time work.

Linda began to have unusual issues: utter fatigue, facial numbness, double vision, lost hearing in her left ear, and then, lost the ability to move. After several tests (MRIs, lumbar punctures, etc.), they diagnosed her with having MS. Treatment with steroids caused some unusual issues. She gained a lot of weight and her face went fully red. The numbness on her left side spread all over her body, yet it felt like she was on fire or pricked by tiny needles. Foggy brain took her over; English became like a second language. She began to talk slowly, which made it seem like she had had a stroke.

Sleep was her saving grace which at this time period, she’d sleep almost all day. During sleep, she didn’t feel the pain that she was experiencing whenever she was conscious. Things deteriorated more and more through 2003. At her next appointment, her neurologist told her that she had secondary progressive MS. He showed her out the door as he told her there was nothing more he could do for her.

“I felt like he had said, go home and die quietly. You’re an embarrassment,” Linda shares. “I couldn’t take how everyone looked at me because they couldn’t do anything to help me. So, I got the pills. I thought that my family and everyone would understand if I took them. They could then go back to living their lives. I couldn’t participate in anything. I felt like a complete failure.” However, thinking about who would find me, I realized it would be my 15-year old daughter who was taking care of me: bathing me, feeding me, brushing my hair who would find me. “I just couldn’t do that to her.”

On the many trips to the bathroom that I made (losing all bladder and bowel control), she would search on the Internet because she felt that there must be others out there in her situation. That’s when she found Low Dose Naltrexone. Those that reported taking it all said that there was nothing to lose; if it doesn’t help at least it won’t hurt.

She printed out all the information and ended up finding a doctor who supported her taking it. Luckily, she found someone who would prescribe it. Within three weeks, the fog that stopped her from functioning lifted. She began to get back her functioning and could once again participate in life.

Linda realized that there would be others out there that could use this help. She started the non-profit LDN Research Trust in 2004 and has since impacted lives all over the world (mine for one).

I am so thankful for Linda’s wellness journey, healing, and willingness to devote her life to helping others through educating and promoting Low Dose Naltrexone.

Linda’s interview in her own words: https://vimeo.com/90316823

My LDN Story: Interview with Linda Elsegood: Part 1

I contacted Linda through her website, ldnresearchtrust.org, just at my one-year anniversary of taking LDN. Here is my interview. You can imagine that I was very awestruck and nervous meeting someone I view as a Rockstar, but Linda made me feel very at ease. She also assured me that my story would be helpful to others. It is a great honor to play a small part in the work she does to get the word out about LDN.

My LDN Story: Interview with Linda Elsegood: Part 2

Just a few weeks after my first interview, I had to reach out to Linda again. She had helped me find my best dosage and timing of 4.5mg twice daily (on waking and around 4pm). After Linda mentions this (at the end of our first talk), I began to research it, buying her LDN Book 2 which I highly recommend.

The LDN Story: low dose naltrexone documentary

This was one of the first videos I watched to help me understand the history of LDN and why/how it works.

Resources Found on ldnresearchtrust.org

There are so many helpful resources on the website as well as in the LDN Facebook Group.

Thank you for visiting my blog today. I am committing to posting once a week by Friday.  However, as you know, my new normal means that sometimes I have to listen to my body, and I cannot follow through as planned. Thank you for your understanding.

My granddaughter says, “Sharing is Caring”;)





Further Reading:

Review of SUNBREAKS IN UNENDING STORMS: Understanding Invisible Disabilities, How to Thrive There, and How to Help by Carole & FJ Griffitts
Sunbreaks in Unending Storms: Understanding Invisible Disabilities, How to Thrive There, and …
HRV and Fibromyalgia: What’s Your Heart Rate Variability?
In an attempt to better my pacing and monitor the quality of …
Men’s Health Awareness Month: Living With Fibromyalgia
During June, Men's Health Awareness Month, I have interviewed Chris Hamilton, newly …
teal line drawn waterlily with teal lettering of the title and motto

Tentatively Ecstatic! My Experience With Low Dose Naltrexone Part 1

Tentatively Ecstatic! My Experience With Low Dose Naltrexone Part 1

As you probably have guessed, I am not a trained medical health professional. What I am is a mom, a mimi, a retired teacher, a lover of nature and of music, as well as, someone living with chronic illnesses. I share my journey to provide some insight and hopefully ideas that may be helpful to others dealing with similar issues. Always, consult with your doctor before trying anything new.

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 of 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.

Image of Low Dose Naltrexone solution  (filtered water and 50 mg pill dissolved) in a jar with ML measurements.

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 1.25mg.

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…I used ounces) 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.)

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 4.5 mg and have no side-effects from the get-go. Some, can start at 2.0 mg and bump up every few days until they get to 4.5 mg. (I will be explaining that while 4.5mg has been the treatment level most researched; it’s not the optimum level for all people.)

Image of me, looking drawn out, with a wet washcloth on my head, laying in bed due to fibromyalgia flare up.
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.

Screen shot photo of online discussion; giving ideas for why I was reacting so negatively to the LDN. (Names removed)
I really am appreciating
all the support and advice
I’ve gotten prior and during
these 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 4 pm in the afternoon. And then, it all passed.  I felt as if a switch had been turned on, I had recently watched 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?

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

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 2 am.  

Around 6 am, 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. 7:30 am 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.

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

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.

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 by Zoom with my granddaughter,  and a bit in person 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 10 pm) and slept until 7:00 (when Scout began 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,  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 and 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 dose as they suggested 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 especially want 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.

As my granddaughter says, “Sharing is Caring!” 🙂