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Kathleen talks on LDN Radio Show 1st May 2019 about Adhesive Arachnoiditis
Linda Elsegood: Today. I'm joined by Kathleen from the United States. Thanks for joining us today, Kathleen.
Kathleen: Thank you for having me.
Linda Elsegood: So could you tell us what condition you use LDN for and what that condition actually is?
Kathleen: I use LDN for Adhesive Arachnoiditis, which is a chronic inflammation of the spinal cord, which is incurable, not reversible and could actually be progressive. And so it is an inflammation that doesn't turn off.
Linda Elsegood: Okay. I mean, is it an inflammation that causes really bad pain in your back?
Kathleen: It doesn't cause pain in my back, it does cause really bad pain from my hips to my toes. And that is a pain in the form of neuropathy and the electrical stimulus that can cause sharp bolts of pain. But most of the time, that kind of electric pain.
Linda Elsegood: So is it really painful if you sit still in the same position for a long time?
Kathleen: It's painful if I sit still for a long time, if I stand for a long time or if I walk for a long time.
Linda Elsegood: Hmm. That's interesting. Yes.
Kathleen: And so, you know, the pain is there and actually caused quite a deterioration in my functional status and I did not find much relief with the narcotics that were offered to me to try and I didn't like the side effects of narcotics. I wanted to maintain as much independence as possible with driving. I wanted cognitive clarity and I wanted more relief from the neuropathy itself. And I was fortunate to have a friend who was a pain doctor, and she said that she had about 80 plus patients on LDN. And so I travelled up to see her three hours North of me, and she introduced me to the concept. And I started it in August of 2016, and I will say that within three days time, I was experiencing significant relief from the neuropathy.
Linda Elsegood: Wow. And what about the electric pains that you are having, I'm thinking, I mean, I used to have electric shock feelings down my arms. Was it that kind of a thing? And you said bolts of pain.
Kathleen: Yes, prior to taking the LDN, I was experiencing, especially in my left leg, there was a sense as if my leg was dead or non-existent. And at the same time, I would have bolts of pain, electric in nature, that would shoot all the way down to my big toe.
And after beginning the LDN, I actually stopped having those bolts of pain. And because I felt like I got my leg back on the LDN, it actually improved my gait so I could walk with a better balance. I was able to stop using my walking poles, which I used most of the time prior to that. And for balance, cause I was falling a lot and once I got on the LDN, I, I actually had better balance. I stopped falling.
Linda Elsegood: So you had this friend who you went to see now when you first started, what dose did you start on and did you start on liquid or capsules?
Kathleen: They were capsules. They were compounded by a local pharmacy, old-time pharmacist, who was nearing retirement. So he had been a pharmacist for probably 50 years. And he said, out of the 80 patients that he had coming in for the prescriptions about 75 of them continued to keep coming back in for refills, meaning that it was a very positive experience for them. And he said, I don't know why it works, but sometimes you have to think outside the box.
Linda Elsegood: So what strengths was it? You started on.
Kathleen: Oh, I'm sorry. I started at 1.5 milligrams, and I took that for, I think up to three weeks, and then she bumped me up to three milligrams again. It was a compounded capsule, and I took that for three to four weeks, and then I got bumped up to 4.5 milligrams and I did fairly well on that, and she said it would be appropriate for you to go up to 6mg if you would like to choose that and if you experience headaches with the LDN, give it a day to three days to see if the headaches abate and, for me, I didn't really have any negative effects from the LDN and 6 milligrams seems to be my sweet spot. So that's what I've been taking for about two years now.
Linda Elsegood: Okay. So if you were to look at your quality of life on a score of one to 10 before you started, ten being the best, what would it have been?
Kathleen: Oh, boy. I would say the quality of life prior to LDN was maybe at a four, because the pain was significant, my functional status was very poor, I had to, of course, retire from my employment and it cut down on being out and about and socializing. Pain is very fatiguing and it also kind of flattens out your creativity, you know, et cetera.
Cause I am also an artist as well as a marriage and family therapist and end of life care, and so 4 would probably be pretty fair. Once I started on the LDN and I got relief from the pain and I started walking better and I had more energy - I wasn't using my walking poles. I got to resume my volunteer work, which I enjoy quite a bit.
I got to return to my pottery studio which is a great joy for me. And I was able to socialize more often, more comfortably, and plus my functional status at home improved to the point where I went back to gardening, which I love. And, you know, helping out with the projects that we had ongoing in our home life.
Linda Elsegood: Wow. But what number would you put it on today? Your quality of life? Ten being the best.
Kathleen: I would say eight. That's how much I have improved with the LDN.
Linda Elsegood: And what are your pain levels like now would you say? With, I mean, obviously sleeping, I would imagine had been a problem, and you're standing and sitting and so on. Are you able to do that for longer periods of time before the pain appears or doesn't the pain appear now?
Kathleen: The pain is, you know, I still have some neuropathy. I also take Gabapentin and Baclofen for muscle spasticity. I think the greatest assist that I've gotten is through the LDN. And I got just a little bit of a sidetrack question. So could you please ask that again?
Linda Elsegood: the pain that you had, I mean, does it cause you any issues with sleeping, you know, staying in the same place for too long at night or sitting or standing for too long?
Kathleen: Actually my sleep is improved quite a bit and I'm able to stand longer and sit longer.
As I said before, my stamina has improved. And with the neuropathic pain, I still have symptoms. They're much more tolerable. I also, because I can engage in more meaningful activity outside the home, of course, that's a great distractor. So it makes pain take a secondary part of my attention.
And I also practice meditation or mindfulness, which is another significant assist for me in managing, you know, the pain or discomfort.
Linda Elsegood: And do you take any supplements to help reduce the inflammation?
Kathleen: I actually take diclofenac, which is a nonsteroidal anti-inflammatory. And that helps me with my arthritic pain, which is one of the issues that I had way back in the beginning, I had adult-onset scoliosis at age 50, so I was fused from T8 to S1. And as a result, I also had to have a hip replacement in 2010 about six months later. And so the diclofenac helps reduce the arthritic pain, the gabapentin and the Baclofen also assist. But that is basically all I'm taking.
Linda Elsegood: Well, thank you so much, Kathleen, for sharing your story with us today I'm sure that's going to help other people with a similar condition.
Kathleen: Yes, I, I really appreciate you having me on as an interviewee. The adhesive Arachnoiditis, it seems to be a condition that affects many and I don't think it's as well known by the medical community as it should be. And in fact, I had troubles with the doctor who knew I had it. And the only reason that I found out was procuring my medical records and reading it and then having to bring it up to him. And so I would encourage any doctors who have an awareness of this, please talk with your patients because I think improving communication about this condition, and also bringing LDN out as an option, is going to be one of the most effective ways for people to regain as much functional status as they can with this condition.
So thank you so much for allowing me to be on your show.
Linda Elsegood: You're welcome. And before we go, is there a group that people could join? Do you know anywhere?
Kathleen: For arachnoiditis? There is a group, there is a group on Facebook, and it's actually a UK based group for arachnoiditis. There are a number of them and the group from the UK is the one that I seem to have the most commonality with. And so you learn quite a bit about how to function with the disease, how to rise above it. You know, with your attitude and your perception of it so that you can have the optimal life experience. But this group has the ability to, you know, people give each other support and they give each other encouragement, and they also, you know, cheer each other on. But they also honour the challenge that we all go through with this condition. And, you know, having that kind of community makes it feel less lonely because it can be a very isolating experience.
Linda Elsegood: Having someone to talk to who understands, who's walked in your shoes really does help doesn’t it?
Kathleen: It really does. And you know arachnoiditis because it can be progressive. There are people who certainly end up in wheelchairs. Sometimes it's wheelchairs, and sometimes it's bed-bound. And so it can be a progressive condition, which is quite frightening. And this group has been my primary source of inspiration and support and encouragement, and I would applaud all of them for their courage and their resiliency in dealing with the condition that's quite challenging.
Linda Elsegood: Well, we've run out of time, so thank you Kathleen, and long may your success remain, and I might get to see you in Wisconsin.
Kathleen: All right. Thank you so much, Linda, and I look forward to future encounters with you. Take care. Bye-bye.
Linda Elsegood: This show is sponsored by our members who made donations. We'd like to give them a very big thank you. We have to cover the monthly costs of the radio station, software, bandwidth, phone lines, and phone calls to be able to continue with the radio show, and thank you for listening.
Any questions or comments you may have, please email me at Linda@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.