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Linda Elsegood: I'd like to introduce Diane to the United States to takes LDN for rheumatoid arthritis. Thank you for joining me, Diane.
Diane: You're welcome. Linda beauty. A pleasure to speak with you again.
Linda Elsegood: Could you tell us when you started to notice the pain
Diane: from rheumatoid arthritis? Um, I began having daily pain with my feet, the week of labor day of 2012.
That would have been early September. I had been canning tomatoes, and I thought my feet just got sore from being on them. And I figured with some rest after a couple of weeks, the pain would go away, but it didn't. And after about six, four to six weeks, I said, this is not normal. I need to have this look at.
So I went to my doctor and talked to him, and he agreed that it's probably arthritis and he prescribed Tylenol, which was not acceptable to me. He told me it was safe to take Tylenol for the rest of my life, which it is not. And I had told him that earlier in the year, just a couple of months prior to my pain, my brother was diagnosed with rheumatoid arthritis and I was concerned that I might have the same thing.
He dismissed my concerns. I chose to seek a second opinion. Um, I went to an orthopaedic doctor who did, when I went there and told me they didn't do feet only above the ankle. So I had pain in my knee. So I had him look at that, and he diagnosed me with osteoarthritis in my knees and told me I should go see a podiatrist.
So we have one that comes into the town where I live to the hospital as an outreach clinic, I made an appointment, and I went to see him, could not confirm rheumatoid arthritis, but did do an examination and some x-rays of my feet. He did say that rheumatoid arthritis can frequently show symptoms first in the feet.
Where I had the pain, and he referred me to a rheumatologist, and you basically have to be referred to a rheumatologist in order to get an appointment. You can't just call up and make an appointment yourself. A doctor will have to refer you. So I chose to go to the doctor where my brother had once and was diagnosed, which was in Sioux Falls.
It's about 90 miles from my home. And they did blood tests and some additional x-rays there. And the day, the Monday after Thanksgiving in November, I got a phone call from the doctor confirming that I had rheumatoid arthritis. He wanted me to take methotrexate Plaquenil folic acid. And potentially prednisone as treatment.
I refused. I asked him if it would harm me to wait to start treatment for a short period of time, so I could explore alternative treatment protocols. He agreed that a short timeframe to look into alternative treatments would be okay. We felt I was fairly early in my disease and that a short delay would not unduly harm me.
So I started to do research on my own, and I prayed, and I went to the library and requested some books. One of the books I found at the library. Um, I believe it was through an interlibrary loan was honest medicine written by Julius Shopee. Hope I pronounce her last name correctly, and I read that book after a very long heartfelt prayer.
And believed once I had read through the book that I may have found the treatment I wanted to try, and that was low dose naltrexone. I didn't stop just with her book. I further researched it online. Um, I Googled it. I found some Yahoo health groups. About rheumatoid arthritis and others about taking low dose naltrexone.
All of my research confirmed for me that this was a treatment that I wanted to try as an alternative to the harmful or biologic drugs normally used to treat rheumatoid arthritis. So I went back to my primary physician who I'd been with for many, many years. And I went back first to the rheumatologist in Sioux falls and ask about getting a prescription for low dose naltrexone.
The rheumatologist refused to prescribe it. He said that it's not an approved treatment based upon the American college of rheumatology. Treatment protocols for rheumatoid arthritis. He did say I could go and try to get it from my primary physician. And if, um, I would get the prescriptions and the physician would, you know, he would monitor my treatment from that point forward.
I then went back to my primary physician and. Asked about getting the prescription for low dose naltrexone. And my primary physician refused to prescribe it. He seemed to be more concerned with lawyers and any potential liability for giving me an off label prescription for a drug that's been approved by the FDA.
I did not like that response from my physician because he seemed more concerned with malpractice and liability that in treating me the patient, I then fired my doctor and have not gone back to him since. So I looked for a physician that would prescribe the low dose naltrexone for me.
Through online support groups on Facebook, including your group, Linda and another group.
There is a woman who keeps a list of doctors that will prescribe. I was also doing acupuncture treatment in 2012, and the acupuncturist had recommended a doctor for me. And it was the same doctor that was on the list kept by one of our angels in the group. So I made an appointment, and I went to see the doctor in January of 2013.
He prescribed the low dose naltrexone for me. I started February 1st of 2013. With a three milligram dose for two weeks. And then I bumped up to 4.5 milligrams, and I've been taking that ever since.
Linda Elsegood: And what was your experience when you first started?
Diane: Well, when I first started taking it, um, I'm not a sensitive, a person that's sensitive to meds.
Some people are, but I seem to tolerate most medications fairly well. I had positive thoughts going into it. This was my treatment of choice. Prior to starting the low dose naltrexone, my rheumatoid arthritis was getting worse. Um, the fatigue and brain fog from the disease was not well, was not good. Um, I get up in the morning, and I'd feel I say about 80 years old.
Um, I was like 50, 51 at that time and I could barely walk. To the bathroom from my bedroom, which is just across a very short hall, um, six feet or less. And it was very difficult getting out of bed in the morning and getting to the bathroom when I started taking low dose naltrexone at nighttime before bed.
I could feel little tingles in my legs, almost like when your legs are waking up from being asleep. Um, If anybody, you know how it goes. If you sat on your leg too long or something, your leg will go to sleep cause of blood flows, net going. And when you get up in the blood flow is restored. You get a sharp tingling sensation in your leg.
As your blood flow is getting back and your nerve endings are waking up and so on. It wasn't that severe, that tingling I felt, but I could tell that something was happening. Um, by the time I jumped up to the 4.5-milligram dosage in two weeks, I felt a lot more like myself. Um, being a 50, 51-year-old woman, instead of 80 years old, I had more energy.
Um, the pain in my feet was less, it wasn't totally gone, but it was a lot more comfortable to walk.
Linda Elsegood: If you had to rate your quality of life before you started LDN on a score of one to 10 and 10 being the highest, what would it have been?
Diane: Well, I was still able to walk, um, the rheumatoid arthritis was mainly in my feet, so I would probably say maybe a five at that 0.5 or six. The fatigue was pretty bad.
So a five or six seems fair. Um, I know that there are people out there in a lot more pain than I am, and some are using canes or walkers, or even in wheelchairs. And I would have to say there's just a lot worse than mine.
Linda Elsegood: What would you say your quality of life is now on that same scale?
Diane: let's go back to when I first started with the LDN and, and how it improved.
I would say it went from a five or six to maybe two or three because I did feel more like myself.
Diane: Dan is good. Then I would say it went from. I kind of did that backwards. Then I would have said that my quality of life was probably like a four or five then.
Um, and then it improved to like a seven or eight. Um, I still had the daily pain from the rheumatoid, but it was better. And the brain fog and fatigue improved. So instead of feeling 80, I was more feeling my own age of 50. There's a big difference there. Um, to be fair, um, I have to say that LDN was not enough for me.
Um, it, it served me very well for months. But in the summer of 2013, I had a lot of stress at work. They were basically trying to terminate me. Um, there's a long process that they had to go through to do so. And I had requested reasonable accommodation at work to try and help deal with some problems caused by my rheumatoid arthritis.
Which were denied to me and the stress and the disease was very active and aggressive. It got worse for me in the summer of 2013. Um, I had to choose another treatment to go along with the LDN. It is again, considered an alternative treatment, but I have been taking antibiotics since the fall of 2013, and together the two are working very well for me.
Linda Elsegood: I mean, any condition where you've got an autoimmune disease, stress and trauma
are really big
triggers. So hopefully. Once your life calms down, things hopefully will improve tremendously as well.
Diane: I agree with you. Linda stress plays a very, very big role with my disease, and I'm sure with many others, such as what you have ms.
Um, in our online support groups on Facebook, you hear that all the time stress can trigger flares. Um, whether. For rheumatoid can trigger flares. There are different things that can trigger it for different people. It's been amazing. It's been quite a journey of learning and awareness since I been diagnosed in 2012, um, there's a whole world out there, not just my little corner of, of the earth.
Where people are suffering from these diseases, many doctors, not all of them, but many doctors are trained in medical school. How to treat symptoms of diseases. Some doctors look for causes. Some doctors try to treat the cause instead of the symptoms. It can be frustrating when a patient has a doctor that only wants to treat symptoms and not look at causes.
Um, I was fortunate in that I got to a doctor he's an osteopath where they try to treat the cause of a disease instead of the symptoms. And that's one reason I'm doing the antibiotic therapy in conjunction with the LDN. Um, for anyone listening to this interview with you today, I encouraged them to educate themselves.
Do your own research. If you don't feel comfortable with a treatment that is suggested to you, you have the right to refuse it and search for your own solution. Like I did. Um, look at side effects of medication that are prescribed for you. Decide. If you are willing to take that medication based upon what it can do for you and your condition and the side effects that could affect you at some point.
And if you're not comfortable with that medication, don't take it, find something else because there are alternatives out there. From the online community, Yahoo groups, Facebook groups, particularly, there are so many people that are successfully using what is termed alternative medication, low dose naltrexone, successfully to treat their conditions.
Um, I know you're doing interviews with many people with many different diseases, but I've seen people online testifying from firsthand experience of the success they're having with low dose naltrexone for multiple sclerosis, thyroid issues, fibromyalgia, rheumatoid arthritis. It's. Very individualized.
Your dosage may be different. Even 4.5 is considered an optimum dose for some things, but with ms and smother diseases, thyroid issues, the dosage can be very particular to you as an individual. And. One of the groups. I have an online support group for people taking or interested in taking LDN for rheumatoid arthritis disease.
And there's one woman that takes five milligrams per day. Some women do better at three; it's very much up to how an individual body works with medication. And I think for rheumatoid arthritis, diet can also play a very big part. It's not to be ignored. I have not done autoimmune protocol diets or gluten-free although, should I choose to do that?
At some point, I do believe it will enhance the treatment that I'm already taking.
Linda Elsegood: What can I say? What an amazing interview. Thank you so much, Diane, for sharing
Diane: Yes. Are there any other questions that you would like addressed Linda?
Linda Elsegood: I'm going to ask is if you can write an article for our newsletter.
Diane: Yes. Um, I'll try my best. I, I'm not much into writing these days, but, um, I'll give it my best shot for you because it's worth it.
This medication low dose naltrexone is like a miracle for some people. It doesn't have harmful side effects. It may not work for everyone, but no medication does. Um, I applied you and your charity and the work you've done over the years to make this, um, more well known out in the world. And I attended for people listening.
I attended the LDN conference near Chicago in 2013. Because I was taking the medication and I wanted to, to go and hear from experts. It was well worth the time and money to attend. So if anyone wants to get more information, I encourage them to order the CD of the conferences that are available. Um, pays a small fee to listen to them online, do the streaming site.
Um, it's just, people call it a miracle drug. It's not really a miracle, but for some that are sick, it can seem like a miracle. Um, I find it an answer to a prayer that I found it when I did. And I'm so happy that it was available to me and I could find a doctor to prescribe it. Um, it has many health benefits, side effect benefits that people have experienced.
No more allergies symptoms after they started taking LDN for, uh, an autoimmune disease. Um, no more flu maybe or no more sinus infections, many, many different things are beneficial from taking this medication what's even better is longterm usage. There are no harmful side effects at this low dosage. And. So I just strongly encourage people that have an autoimmune illness of any kind to look at it as either an alternative treatment or something to take in conjunction with your other treatments.
Um, more information is becoming known through research. Um, hopefully, it will become more widespread with the doctors. It is up to us, the patient. To make our doctors aware of the medication and the uses for it and get them on board to prescribe it for their patients. So I encourage people to do that. Um, Julia halts, um, Teleseminars via phone for people that want to go to their doctor and talk about taking the low dose naltrexone and she'll have helpful articles and papers that you can print out and take to your doctor to help educate them.
Linda Elsegood: Thank you very much for sharing your experience with us.
Any questions or comments you may have, please email us at Contact@ldnresearchtrust.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.