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Linda Elsegood: I would like to introduce Brittany from the United States who takes LDN for Vasculitis and Multiple Sclerosis. Thanks for joining me, Brittany.
Brittany: Thank you.
Linda Elsegood: Could you tell us when you first started to notice that there's something wrong with you?
Brittany: I was pregnant in 2006 with my second child and he appeared to me to be an exceptionally large baby.
The doctors had said: "Second children always feel larger. He's not that big. That's something you're just worried about." Because my first child had gotten stuck for several hours, and so I was nervous going into the delivery. My first child had been an eight-pound baby, and so towards the end of the pregnancy, they did aside for dates ultrasound and told us that the second baby, my son was only seven pounds.
And so they didn't feel that there would be an issue with getting him out. When the delivery date actually came and he came out he was actually 10 pounds half, and It was delivered vaginally which apparently is not a safe way to deliver a child that large. So in the delivery, obviously, there's quite a bit of push and pull going on between the doctor and me.
The baby was severely injured and I apparently had suffered three dissections, a swelling of my vasculature in the brain, multiple pseudoaneurysms. I was just very sick and was bleeding in my brain. During the delivery, I had told them I have a headache and they said: "You can't stop pushing because his head is delivered and if you stop now, you're going to have a brain-damaged or dead baby. So you got to keep going." So I keep pushing at the advice of the doctors and ended up being released just fine, went home and that headache just persisted, would not go away. And I call the doctors, they say to take Advil, drink diet Coke, caffeine. "You're probably tired because you have two babies." About two weeks after the delivery the headache had gotten so bad that I was having visual disturbances, vertigo and nausea. We called the doctor and they said he needs to go right to the emergency room.
They ran a cat scan and came back and said, "You have a spot on your brain. We can't let you go home. We don't know what it is." So I was admitted to the hospital. They did a four-vessel cerebral angiogram and found significant stenosis feeding all through the vasculature in my brain. I had dissected both carotid arteries at the neck level, going into the base of the skull, and I was transferred and admitted to the ICU at Barrow's Neurological Institute, which was one of the premier neurological hospitals here in the States. They essentially told us:" We're doing everything we can." I was on massive blood thinners and massive doses of steroids. They essentially said, "We're doing absolutely everything we can to save you.
It might not be enough." And at the time I had a two week old and a two-year-old at home. I was a stay at home mom. We just have to sit there and hope for the best. We asked what else we can do? And they said to pray. And after several weeks in hospital as they were working on anticoagulation to make sure that the dissections didn't clot and end up in a stroke. They came to me and said, "At this point, we've done all we can do. So you can either go home and spend whatever remaining time that you may have left with your babies, or you can stay in the hospital where if you do have a stroke, we're more likely to be able to catch it."
And I felt that if death were in the cards, I wanted to be home with my kids. I left the hospital, went home. My husband's father is a physician, so I asked if they would allow us to move in with them. In case I did have a stroke, at least we would have a medical professional on-site that could help.
I was released to my inlaws house where I subsequently had three strokes and was very sick. At that point, they felt that this was simply a postpartum complication. They weren't sure what they were treating. They just knew that the swelling and disturbance in my brain was significant enough that I needed to be on steroids longterm.
I needed to be on various neurological drugs to, you just be able to cope. There were tons and tons of pain from that injured area in my head, daily chronic headaches. It was really awful and slowly over a period of probably six to eight months, I began to recover, but I was still just a little off.
My husband described it as. You know before you were wicked, wicked smart. Now you're just wicked smart. So I lost a wicked by my husband's estimation. Life is really tough. I had very little energy. My thinking wasn't there. It was difficult to be the caregiver for two children.
I was kind of slowly working toward trying to get to my previous baseline. After about a year of recovering, suddenly I started to just not feel well. There was a node that had developed behind my ear, a solid lump feeling. I was exhausted all the time, sleeping a ton, not from depression, just because I was exhausted. I had some skin lesions that had come up. We were really trying to figure out what, what could this be? I went back to the doctor. My neurologist thought perhaps MS. Another team of neurologist said, no way Ms and I was sent to a rheumatologist to ran another full battery of tests and said how we found it. "You're actually testing positive for a very rare autoimmune disorder, a very rare form of vasculitis called polyarteritis Nodosa." And I began a two year treat the course of treatment with Methotrexate and steroids. By the end of that two year period, I no longer tested positive for it. They considered me to be in remission, but I still didn't feel well.
So I went through probably two more years of just feeling unwell. Like I had the flu all the time, constant body aches, headaches, exhaustion to the point where my kids would get home from school at the end of the day and I would be sitting there trying to help them with their homework, and I would fall asleep sitting up on the sofa.
Eventually, I was not doing housework, not making dinner. I was a walking zombie. Finally came to a head when I had gone to pick up my kids from school, was driving home, and I fell asleep at a red light with my kids in the car. When that happened, I called the doctor and said, there's something wrong with me. I am not okay. I might be in remission from Vasculitis, but I am not okay. Something is wrong. I was concerned about my kids' safety. I was concerned about being able to be an effective mom. I went back in for another full battery of tests, and at that point, they found a lesion that was suspicious for Ms, and they had already seen a lot of the myelinated spots in my brain.
Because I had no symptomology of Ms, my main team of doctors wasn't ready to call it MS. When I went back in for that, next set of MRIs, they found that I had a new lesion in my spinal cord, and so they said, we are now ready to make a definitive diagnosis of Ms on top of the Vasculitis, which is in remission.
So we elected to immediately go on Ms therapy on Copaxone, which is a daily injection. They put me on Ritalin, and on antidepressants to try and get the energy levels up. And even with all of those pharmaceutical interventions, I was still sleeping 12 to 14 hours a day, just exhausted.
And after I would sleep an entire night, felt like I hadn't slept at all. So it's a very frustrating period of time. I kind of resigned myself to, I guess this is the new normal and life is not what I thought it was going to be. I'm never going to be able to do the things that I wanted to do.
I had a career in television news. I was a presenter. Giving all that up was a lot of my identity was very difficult. I was constantly looking for things to help. We had tried diet and exercise and all kinds of different interventions that were sort of more along the natural side of things because that's kind of where I naturally align and nothing was working. My husband was exhausted. We were all exhausted. We went on a vacation to Seattle to visit my brother and his family. We went to get a manicure and in the salon, it was a rainy day in Seattle as it often is.
And we live in Arizona, which is the desert and very sunny all the time. I was sitting in the salon and getting my nails done. There was a woman sitting next to me, and she made a comment about the rain, and I said, "I love it. I bet you know if I live here, I probably don't. But I love it because I'm coming from Arizona where it's eternal sunshine, and it's sort of nice to have some different kind of weather."
We started chatting and I said: "The only thing I really get bothered about with the rain is it makes me so tired." And she said: " Oh, why?" And I said: " Well, I had a mass." And she said: "Really? Have you heard of LDN?" And I thought, who is this crazy woman in the salon who's trying to pitch me on?
I thought multilevel marketing or something ridiculous. She started telling about it, and she said: "My naturopath just prescribed this for me. I've been on at three days, and I feel great. I have Hashimoto's thyroiditis and it has completely turned my life around. It's only been three days, but it's night and day, the difference. "And I thought, here's one more thing that somebody tells you about and it gives you false hope. I can go and ask the doctor, and it's not going to make a damn bit of difference because nothing works and nothing helps. I was very pessimistic and hopeless. She said: "Please give me your email address right here, and I will email you information about it." I thought that's odd that this stranger is so in passion about this medication. If I give her my email address, I figured I have nothing to lose.
I came back to Arizona and looked over her email and started doing some research and found the information from the UK and thought, wow, if this really does all it says it does, this could be amazing, and this could be the answer. So I called my naturopath and said: " Would you be willing to talk about this?"
And she said: "Sure. Come on him." And we sat down, and she said:" I have a couple of patients who are on. If you're willing to try it, there's no risk. And you can take it with the capacity, and it's not going to hurt you. So let's go ahead and try it." So she prescribed it starting at 1,5 mg, and she said: " Take it slow because you don't want to rush into it."
I started taking the 1,5 mg, and I was just at the cost of a charity event that I had volunteered for and had taken on entirely too much. I had volunteered prior to the Ms diagnosis and thought that I would have enough energy for it, and I did not have enough energy, and I was tired to the point of tears every night because there was no way that I was going to be able to get it all done. I was so stressed out and worried about letting my kids, friends and the school down. I took that first dose and I noticed right away the next morning I popped out of bed.
And I was like:" That's probably placebo because I'm so hopeful. It's going to do something."
She had told me you have to take 1.5 for the first several weeks so that you don't overload. After maybe four days, I felt better than I had felt in years. I had energy. My mood was better. I was less irritable.
I just felt like I could cope like I could do things, I could get up in the morning, take a shower, get dressed. My shower didn't completely wear me out for the rest of the day. I could do the dishes again, make dinner again. All of a sudden I was a person.
I was human again, a mom and a wife. I thought: "Could this really possibly be this drug?" I called the doctor, and she said: "If you feel that good, go ahead and increase to three. Like I'm fine with you taking it at your own pace." And I increased to three, and it only got better.
Suddenly I had my whole entire life back. I was able to go back to work. I work with my husband and in our family business. So I'm back to work now, a contributing member of my family and my household and our income. I'm able to care for the house and work and care for my kids and volunteer.
I run a girl scout troop. I'm like an Uber mom the way that I always wanted to be. And the one thing that made the difference was 3 mg of this little drug. It's been powerfully life-changing for me because I felt like I had lost myself and who I was.
Then all of a sudden this little pill that I take every night is..
My pain is a far decreased. I was daily narcotics from headaches and body pain daily. So I had my narcotics prescriptions came in, doses of 120 at a time because otherwise, I was unable to move sometimes and I haven't taken narcotics in a year beause that's when I started taking the LDN. The moment I started taking LDN within maybe three days, any pain that I had was treatable with Motrin. My chronic headaches, I still get them daily, but they don't stop me in the way that they used to. I don't have to retreat to a dark room and put ice on my head and cry and pray.
I can work through my headaches now, whereas it was impossible before. I have almost zero brain fog. I'm a productive person at work. In fact, I was just hired an as independent consultant for another company. All of these things that I thought that I had to give up because of my brain just didn't work anymore.
It's back, and I can communicate, and I can write again and I can earn money and I can be with my kids and my husband and keep the energy level up. And the pain, like I said, is decreased. My mood is not hopeless anymore. It completely gave me energy and hope and less symptomatic pain.
And everybody, I talked to now who has any kind of autoimmune disorder I'm like: "Please go talk to the doctor about LDN." I turned into that woman in the salon now because it made such a huge difference for my life. I'm so grateful that I ran into a stranger who wanted to share that.
Then we had that kind of random conversation. I don't really believe in coincidence. I was very fortunate to have that woman in my past that day because it made such an enormous impact for not only my life but my kids' lives and my husband's life, our life as a family.
I will never give up my LDN forever and ever because it just completely changed my life. I'm grateful. When I was asked to do the patient testimonial, I felt, you know what? I want to pay this forward because of it's inexpensive, and I have no side effects from it whatsoever and the benefit, it's all been upside, and it's just made an enormous difference. I feel like I can be the mom that I wanted to be, the wife, the person that I wanted to be, and I don't have to compromise because I have an illness. That is a true gift and a true blessing.
So that's my story.
Linda Elsegood: It's fantastic. I mean, most of the story. Are you still on 3 mg? Did you try going up to 4.5?
Brittany: I am still on 3 mg. We have talked about going up to 4,5 mg. I do have some muscle spasm activity, so we've been holding at the 3 mg. It's pretty good.
If there were ever to be some exacerbation that was to be difficult, I have room to go up. But I don't really feel the need to. I will also say though, that since I started taking the LDN, I have had three lesions completely disappear off the MRI. What I've been told by my neurologist is that it is unusual that the Copaxone certainly is not doing that.
They don't expect Capaxone to take care of lesions, they expect it to prevent new ones. So they were very enthusiastic about the fact that I've had three lesions disappeared. I'm pretty into the answer about that too, because you only have one brain, so you want to preserve that if you can.
It's not only my subjective experience that I can speak to, but it's also the objective image from the MRI that tells the doctors that I'm in fact getting better. That's pretty awesome.
Linda Elsegood: Wow. Well, thank you very much—you sharing it. I mean, wow, just amazing.
Brittany: It really is, and I just feel so fortunate, and I wish that this were more mainstream.
I really wish medical doctors were using it more and considering it more. If I had been given the option at the beginning to try LDN rather than going on Copaxone, life could have been different so much earlier, how lovely that would have been. Do you know?
But in the meantime, I'm just incredibly grateful for what I've gotten back because it's been a life-changer.
Linda Elsegood: Well, thank you.
Any questions or comments you may have, please Contact Us. 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.