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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]