LDN Video Interviews and Presentations

 

Yolanda's Journey: Overcoming Rheumatoid Arthritis and Hashimoto with LDN and Diet

 

 

 

Jade's Journey with Hashimoto's and Low Dose Naltrexone

Jade from South Africa talks about dealing with Hashimoto's and her journey with Low Dose Naltrexone (LDN). Jade was diagnosed with Hashimoto's in 2010, but she only discovered LDN in 2019 after stumbling upon it in a Hashimoto's Facebook group. She consulted with a functional doctor in South Africa who prescribed LDN for her.

Before receiving her Hashimoto's diagnosis, Jade experienced severe hair loss, which prompted her to seek medical attention. Although she didn't exhibit typical symptoms such as weight gain, she suffered from fatigue, which she later learned was related to Hashimoto's. Initially diagnosed with an underactive thyroid, it took years before she was informed of her Hashimoto's condition.

After moving to Germany in 2016, Jade's symptoms worsened, leading her to research and seek out support groups to manage her condition better. Despite making dietary changes, she found that her antibodies remained high, which motivated her to explore LDN as a potential solution. Since then, she has seen significant improvement, with her antibodies dropping to remission levels.

Obtaining LDN in Germany proved to be challenging, as many doctors were unfamiliar with the medication. Ultimately, Jade continues to source her LDN from her doctor in South Africa and relies on family members to bring it to her when they visit.

Jade started LDN at a low dosage of 0.5mg, gradually increasing the dose each week until she reached 4.5mg. Initially, she experienced vivid dreams and fatigue for the first few weeks.

Overall, Jade's journey with LDN and Hashimoto's highlights the challenges of accessing specialized treatments and the importance of advocating for oneself in managing chronic conditions.

In addition to managing her Hashimoto's with LDN, Jade continued taking LDN throughout her pregnancy. Despite some doctors advising against it during pregnancy, she did her own research and found a supportive community. She believed LDN potentially helped her from having a miscarriage and had a positive impact during her pregnancy. She had a healthy pregnancy and a smooth birth, and her baby is now three months old and healthy. She values the importance of doing her own research and seeking second opinions from doctors and is grateful for the positive experience she had during her pregnancy.

 

Melanie, a resident of Canada, went through a challenging journey of coping with multiple health conditions such as MCAS, POTS, Sjogren’s, Fibromyalgia, Asthma, and Hashimoto's. It's undoubtedly difficult to manage so many health issues simultaneously. However, Melanie found that once she was diagnosed with MCAS and learned how to control it, she observed an improvement in every other condition she had. It's admirable how she persevered through her struggles and learned to manage her health issues effectively. 

 

Sarah Zielsdorf, MD, MS - Hashimoto's Thyroiditis - 2022 Conference (LDN; low dose naltrexone)

 

 

Lauren Mathewson, ND - LDN Case Studies - 2022 Conference (LDN; low dose naltrexone)

 

 

Elizabeth Livengood, NMD - LDN and Thyroid - 2020 Conference; Bahamas (LDN, low dose naltrexone)

 

D

Today we're joined by pharmacist Dr Dawn Ipsen who's the owner of two pharmacies in Washington State, Kuslers Pharmacy and Clark Pharmacy. Could you tell us what it was that inspired you to become a pharmacist? 

I knew early on as a high schooler that I wanted to have a doctorate degree in something and was sort of a little bit torn between pharmacy and optometry and with long heartfelt discussions and soul-searching I became a pharmacist and very early on in my career not only was I trending towards being a pharmacist but I had an opportunity to intern at a compounding pharmacy and just absolutely completely fell in love. It was the art and the science and the way of being able to help individual patients in manner of which no other pharmacist in my area was able to do so, of providing very personalized therapies. I was able to really listen to patient needs and work with their doctors, to formulate the exact therapeutic tool that they needed to improve their quality of life. That is really what has driven me in my career. 

When did you open your first pharmacy? 

I had been a pharmacy compounding lab manager for about 10 years for the Kusler family. When they were ready to go do other things in their life I was given the opportunity to purchase Kusler's Compounding Pharmacy. It had been a pharmacy I had worked at as a staff member for 10 years and took over as the owner and I've now owned that pharmacy for almost 10 years. In January it will be 10 years. That was my first pharmacy. I was doing all my good work up at my Snohomish Pharmacy and suddenly had a random phone call on a Friday afternoon in which the Clark family was looking for a new owner for their pharmacy. They were ready to retire and go do other things as well. I've also owned Clark's Compounding Pharmacy down in Bellevue Washington for six years. I've been an owner for almost 10 years total and have had multiple locations now for about six years. We service not only the entire state of Washington but we also work within nine other states as well. Our boundaries go quite deep and it's a really great way to help all types of patients all over the nation. 

What would you say is the most popular form of LDN that you use the most? 

I would say primarily we use the most customized strengths of capsule formulations of low dose naltrexone (LDN). It gives patients really great consistency yet opportunity to get the doses titrated in appropriately where they need it to be. What's really great about how we approach our making of capsules: we use hypoallergenic fillers. We're also able to work specifically with patients who have sensitivities. We can customize what that filler might be and I think that's really what sets our pharmacies apart and why doctors and patients choose to work with us. We are experts in autoimmune and chronic inflammatory diseases and therefore we're very used to working with patients where the normal just isn't what they need and isn't what's best for them. We can customize that to be appropriate for them. Along with capsules of course, we are able to do transdermals. That's really popular in pediatrics, especially for patients with an autism spectrum disorder. We are able to make flavored liquid tinctures of it so patients are able to use various small doses to titrate up doses. We also make sublinguals. I would say capsules are pretty popular for us. 

What kind of fillers are you asked to use? 

Most of the time I will steer a patient towards microcrystalline cellulose (which is a tree-based cellulose). It is very hypoallergenic for a lot of patients. However, some patients know they have tree allergies and those patients primarily prefer rice flour. I do have a couple of patients, but very very rare, that actually do better on lactose filler. They tend to not be my autoimmune patients. They tend to be patients in the chronic pain spectrum area. We have also worked with other fillers, like tapioca flour. We can be very customized into our approach of how patients need it. I've got one patient that comes to mind that loves magnesium as their filler and that's very relaxing for their muscles. I've also seen probiotics being used. There is not one right answer to how we do things. We are that pharmacy that is able to have a conversation with a patient. We talk about what their needs are and customize it based on that approach. 

From the prescribers that you work with, do you have many consultants that you fill scripts for? 

We definitely do. That's also kind of a little side thing that I do. I've always been very passionate about teaching. I'm on faculty at University of Washington School of Pharmacy and also Bastyr University, which is one of the top naturopathic doctor schools in the nation. I teach there during summer quarter. I teach nationally to providers continuing ed-based content that is often LDN in nature, or ties into LDN. Especially with autoimmune and chronic pain and chronic inflammatory conditions. We consult a lot with doctors. I probably work with three or four hundred functional med type providers on any monthly basis, even on being able to customize therapies for their patients. We are really big in the post-COVID syndrome arena of helping patients that are really struggling and LDN. We're finding it pairing quite nicely in that condition as it's very inflammatory based. We work quite heavily within the MCAS arena for patients who have a lot of mast cell instability and need other therapies. LDN is one of the tools that is used quite frequently by those types of providers and for those specific kinds of patients. 

Do you work with any pain specialists, dermatologists, rheumatologists, gastroenterologists? 

We do. Honestly, I’m quite proud of our little Seattle area of Washington because we do have MDs that are pain specialists that are now really turning towards using LDN in their toolbox of things they have available for patients. They're getting quite savvy at it. They're doing a really great job. It is super exciting. I have some dermatologists. I consult a lot with my functional med providers that are seeing dermatology conditions like psoriasis. I have an email I need to work with a doctor on after this to help them with this patient with a psoriasis case. We are seeing it in the GI world as well for Crohn's and irritable bowel disorder. Those chronic inflammatory conditions. I would say the MD pain specialists are really turning around over here. Obviously with the opiate crisis that has occurred in our nation I think most doctors of any type of credentialing or medical training or experience are quite interested in what LDN is doing for their communities and what opportunities it affords for patients who are trying to make sure they aren’t addicted to opiates but yet have something to improve quality of life and their day-to-day living. Low dose naltrexone has been an amazing tool for that. 

I'm always excited to meet different LDN prescribers and nurse practitioners who are providing lots of scripts. When you get an MD or a DO that is prescribing LDN and it is completely out of their comfort zone, I always think yes, you know we've got another one on board. We're making it right. We're getting it. MDs are already working outside of the box. That is normal for them to look into LDN; it's not normal for MDs to look at LDN but as you know, I've interviewed so many people and so many MDs when they have a patient that they can't help, and fix their issues. They've tried everything and they feel as if they've failed this patient, and then they try LDN. Once they have had amazing results with the first person it's then so easy for them to look into prescribing, not only for other patients with that condition but for any autoimmune disease, chronic pain, mental health, etc. 

I mean it's really amazing and this is where people like yourself come into play. The hand-holding with doctors because a lot of them haven't got time to do the homework. They're very busy and they need somebody to tell them exactly what it is, how to prescribe it, what to look for, what to do and have somebody on hand to say, like you said, I've got a patient with psoriasis. What do I do? Can you help me? That is the way to get more doctors involved is the pharmacist doing the hand holding. 

There is a local psychiatrist in our area that works with younger adults with substance abuse disorders and teenagers that are having a lot of trouble with mental health. I had an opportunity to get him thinking about LDN and his patient population. I love when I get to reconnect with him every few months because he just raves He finally has a tool that actually does something. He felt the antidepressants and all these other things were not really fixing any of the issues or fixing the symptomatology. We still have the same abuse issues, we still have the same addiction issues and we still have the same levels of depression and suicide risk. But with LDN he's finding that he's actually causing positive change in his patient population, and that's the only thing he really changed within his practice. We're really affecting the health of our community in a very positive manner with something that's really safe and low risk and not expensive. It doesn't get any better than that. It's the best compliment I could ever have. 

It's really nice when patients take all their information to the doctor. Once you've got a doctor really hooked on prescribing LDN they can change the lives of hundreds of patients. Dr Phil Boyle uses LDN in his fertility clinic. He also uses it in women's health for things like endometriosis, polycystic ovary, painful periods, heavy periods. Right across the board he uses LDN. He gets patients coming to see him with women's health problems who also have Hashimoto's or long COVID etc. I refer to his work all the time. He gets questions a lot from local providers such as we have somebody who wants to become pregnant, or they did become pregnant and they're on LDN and they want to know what the standard of care is and can we continue, and what's the risk and benefit are. It is so great to have providers like him out there that have been doing this work for so long that we can very confidently share those case experiences and history of using the medication long term for those patients. 

There have been so many of our members who were skeptical about using LDN during pregnancy. Doctor Boyle is always very generous with his time. I will send him details and he will answer the patient and share his experience. You know we used it once up until birth rather and breastfeeding, etc. We have those people who have done two or three pregnancies using LDN who are happy to talk to other people. This is my experience with 20 years as the charity next year, which is totally amazing, but I’ve found that word of mouth and with the education it is just spreading. 

Linda, you've done an amazing job with the LDN Research Trust and I thank you for that. You have made the Research Trust, its website, resources and its books into a trusted referral point that I can use with our doctors and our patients who are wanting that next level of information beyond what I'm able to say to them. They want to go see those studies themselves. They want to go read the book themselves and I know that without a doubt I can send them to your resources for them to receive complete in-depth and correct information. Thank you Linda. You're doing amazing things and this is all because of you. 

How can people contact you? 

We have two locations in Washington State. We have Kusler's Compounding Pharmacy in Snohomish Washington and the website there is www.Kuslers.com; and then we have Clarks Compounding Pharmacy in Bellevue Washington. That website is www.clarkspharmacywa.com. The WA stands for Washington. We are happy to help patients all over and talk with doctors that need guidance and assistance in learning more. I love being an educator and I love being here to support my community. 
 

 

28 June 2023

Welcome to the LDN Radio show brought to you by the LDN Research Trust.   I'm your host Linda Elsegood. Today we're joined by Kim from the United States who uses LDN for Hashimoto's and Sjögren's syndrome.

Thank you for joining us today, Kim.  Can you tell us what your life was like before you got sick?

Before I got sick I was pretty active.  I was outside a lot.   I loved hiking and I was actually doing CrossFit, heavy weight lifting and various athletic activities.  I loved being outside walking my dogs.  Then that changed when I got sick. 

How old were you when that happened?  

It started about three years ago during the height of the COVID pandemic in 2020 was when I got sick.  

What did you notice?  

Prior to that period I had actually had some bouts with oral cancer. I had cancer on my tongue and it was due to dry mouth and we never found the trigger.  We didn't know what was causing that.  I had five surgeries to remove that and that was in my mid-20s and my first surgery was when I was 32.  We didn't know what triggered that until I was just diagnosed with Sjogren's disease in 2022 and we figured it was probably related to that.  As far as three years ago I got a bout of COVID pretty bad. That was when it was coming into fruition t and then I noticed that I was having even more severe dry eyes, severe dry mouth, lots and lots of joint pain to the point where I felt like I was constantly getting the flu or having the flu battling it.  I was having low grade fevers.  I had chills and debilitating fatigue.  I have a computer job and I was unable to do that computer job even at home, that's how sick and fatigued and everything that I was.  

If you had to rate your quality of life on a score of one to ten and being the best what would it have been?

It was about a two.  I was out of work on medical leave for a while.  I was pretty much just getting out of bed to get my son to school and taking care of my dogs and I had to hire somebody to clean my house because I couldn't even do that.  It seemed like there was just no hope.   I felt like I was getting sicker and sicker and we were running tests and finding remedies and solutions and trying one medication after another that didn't really do anything or had terrible side effects and it was awful.

How easy was it to get the prescription for LDN?  

It was quite easy actually because I started seeing functional medicine doctors here in the U.S and when I told her that I was  taking hydroxychloroquine at the time and it helped but just a little bit.  It took the edge off but it still wasn't giving me my quality of life back.  The doctor asked what are my main complaints?   I said that the joint pain and the debilitating fatigue and she says what if I can give you something that will take care of both of those?  I said yes please.  She said LDN.  

How long ago was that?  You said it was three years when you first got sick but how long did it take you to find this doctor?  

To find this doctor and get that diagnosis and get on LDN was September 2022.  I haven't even been on it for a year quite yet.  

What did you notice initially?  Did you have any side effects?  

I had some minor ones and it turned out to be just due to the filler of the LDN that I was getting. I'm very sensitive to medications and drugs and because I had been so sick my system had kind of thrown me into that hyper histamine state where you have mca's going on.  I had allergic reactions to everything.  I  had my LDN initially filled with .microcrystalline cellulose and that is what I reacted to.  I felt pretty bad for a while until we figured that out.  Then I was able to switch my filler to ginger root.  I didn't have any problems with that.  I think there were some minor headaches at first. I had started taking the LDN at night but then I switched to morning dosing and that seemed to work better for me as well so those were the only minor things. Since then it's been smooth sailing.  

How long did it take before you noticed any improvement?  

I  noticed improvements in my energy and my sleep within three days and then even a couple weeks later is when the joint pain started feeling much better.  Within three months I felt like a brand new person.  I was able to say that I was joint pain-free, my fatigue was pretty much gone.  I was able to go back to work.  I was able to clean my house again and do the fun dog walking stuff I've wanted to do. I slowly started getting back into the life I knew.  

Did you have to change your diet and take supplements or anything?  

I had already changed  to be gluten free and dairy free a couple years back when I was just noticing some gut issues going on.   I didn't change anything else.  I just continued to do gluten-free and dairy free and just taking the LDN has seemed to improve everything.  

What would you say your life is now on a score of one to ten?  

It's closer to about 7.58.  Since it's only September it's not quite been nine months.  I'm still slowly trying to get back into doing more activity, losing some weight that I have gained and things like that and trying to make sure because autoimmune diseases are tricky.  I make sure I don't overdo it and throw myself into a flare.  I have noticed that even when I do go into an autoimmune flare they are much shorter-lived  than they used to be.  I now  see what's happening. Let's take it easy and it seems like the LDN has calmed everything down including me having those reactions,histamine reactions to all kinds of weird things that I never had before.  It seems to have just really calmed my whole system down. 

You said that you're in the US.  Which state are you in?  

I am in Ohio.  

What would you say to other people who are in that awful place that you were in before you heard of LDN?  What advice would you have told yourself if you could go back?  

I had been told about LDN approximately a year before I actually got prescribed it.  I heard it from a friend of a friend you know on Facebook and I was like oh that sounds interesting.  I should probably look into it and I didn't and I could just kick myself because I could have been feeling so much better a year sooner.  I'm part of some of the LDN support groups on Facebook and I see people posting a lot saying they finally got a prescription to LDN but they’re afraid to start taking it. I'm feeling all this stuff and all I would like to say is just don't be afraid.  Just try it. The worst that can happen is you might have a little bit of insomnia or a little bit of headaches for a little while but there's virtually no side effects.  It's a game-changing drug that can help you really get your life back and if you can't find a doctor to give it to you there's other ways.  You can go online to get it. AgelessRX.com is one that we have here in the U.S that will have a doctor prescribe it for you.  Don't hesitate.  When somebody mentions it, as soon as you learn about it, look into it.  Give it a try.  

You have Hashimoto's so  I think you had high antibodies. What are those antibodies like now?

When I first was diagnosed with Hashimoto's in 2021 they were um 725 and then throughout the next year, before I was actually diagnosed with Sjogren's and was getting sicker and sicker, they went up to 13,000. As soon as I saw that number I thought they messed up the test.  It had to be wrong.  Unfortunately it wasn't. Since I've started LDN I have dropped those antibodies down  to about 1260. They're still very high but coming down from thirteen thousand in seven months that's huge. Yes it was good. 

How is your fatigue? How many hours were you sleeping before?

I was still sleeping I was sleeping about eight hours roughly average every night.  Given my schedule I really couldn't sleep much more.  I took a nap every day. There was absolutely no day that I could get through without taking a nap.  I  could nap two hours, three hours and then I would still be tired when I woke up.  The fatigue was the kind where it doesn't really matter how much sleep you get, it's just pure utter exhaustion. I remember that feeling.  Yes. Going to bed thinking oh I'm just so tired.  I need a good sleep. Then I would wake up and I'm just as tired. Did I even sleep at all? 

How is your pain?  I mean was it mainly joint pain that you had?  

Correct. Joint pain and muscle aches.  I initially went to the rheumatologist because I thought I had rheumatoid arthritis.  I felt it was particularly in my hands and my shoulders and my hips and after he did some testing and some more assessing we found out it was Sjogren's which has the same joint pain that rheumatoid arthritis does.  It was also muscle muscle aches, that sick feeling like you always have the flu kind of feeling or fighting it off.  

Now you have dry eye and dry mouth.  How has that been? How long did that take?

When I first noticed the symptoms I was in my mid-20s. I had told a dentist that I thought I had a salivary gland issue because that side of my mouth was always dry. It's been going on for 20 years for me. When I had my first surgery for my tongue that was when I was 32.  It's been about 15 years since I started with the really dry mouth battle. During the year that I was very sick 2021-2022, before LDN, I was having to constantly either suck on mouth lozenges or use mouth sprays or a gel that you can put in your mouth like called Biotene.  Biotene helps soothe dry mouth. I also used lots of eye drops as well.  I can't remember the last time I've used them.  It seems to have drastically improved everything. 

Would you say your eyes are back to normal, whatever normal is?  

I would say maybe just a dash under normal. Not perfect but definitely much  improved.

If your eye did become a problem you can get LDN eye drops.  If you do ever try them please let me know.  I'd like to see how they benefit you.  Also, LDN has a nasal spray which should help with the eye and the mouth.  Those are good resources to keep in the back of your mind if ever needed.  

It was really nice talking to you and thank you very much for sharing your experience with us today. 

[Music] Any questions or comments you may have please email me Linda l-i-n-d-a at ldnrt.org.  I look forward to hearing from you. Thank you for joining us today. We really appreciated your company until next time stay safe and keep well. [Music] foreign [Music]

 

Kristen Burris LAc, MSTOM - Acupuncture and Chinese Herbal Medicine(LDN; low dose naltrexone)

 

 

Connie - US: Hashimoto's (LDN; low dose naltrexone)