for Death Row PATIENT, Palliative Care Patient Committed NO CRIMES_ ABANDONED_ Brandy Stokes _ Special Guest_ Hollywood Star Denice Lewis, Speaks Out on Life with Intractable pain.
Category
📚
LearningTranscript
00:00:00Welcome, everybody. Welcome, family, like we call each other, and thank you for coming
00:00:06and joining us of DocTalks with Dr. Flores Tennant and friends. Our special guest tonight
00:00:13is Denise Lewis, and we're really excited to have her with us, and we do extend a warm
00:00:19welcome to you, Denise. We're glad you're here. Thanks for being part of the family.
00:00:23Dr. Tennant, I know you have a full boat ahead of us, so I will hush and let you go ahead
00:00:28and take over. Thanks so much. Thank you very much, Jamie. It's great to be here and
00:00:34see all of you. We've got a very, very busy schedule tonight. As always, it seems like
00:00:39each week we have more things we want to talk about, more issues we want to bring up, but
00:00:46I'm going to get into the educational part of this very quickly and get it, I want to
00:00:51say, get it over with, but get on to something that is the first of several sessions. I know
00:01:00that some of you are aware that I and my foundation have been doing research on the Epstein-Barr
00:01:07virus for the last few years. I'm pleased tonight, or I guess in some ways unpleased,
00:01:15because a lot of it's very unpleasant news, to talk about what this virus is and why it
00:01:22is now a major factor in the diagnosis and treatment of chronic and intractable pain
00:01:30patients. Now, this is quite a surprise to all of us. First off, I'm going to give you
00:01:37a little history of my own about viruses and about intractable pain. In the 1970s,
00:01:45some of the very first people that I treated in our intractable pain clinic were people who had
00:01:52had polio. Now, they were still alive. They'd caught polio in the 40s and 50s, and so they
00:02:00were still alive, but a lot of them, interestingly enough, suffered from intractable pain due to leg
00:02:05and foot neuropathies. That was where their pain was. And, of course, I treated them,
00:02:13and we didn't know a lot about it at that time except to relieve their pain. And incidentally,
00:02:17back in those years, we didn't have opioid restrictions. We didn't have all the people
00:02:23telling us we can't treat pain. So, whatever we needed, we got for people. So, that's the first
00:02:29thing you should know. But I remember something very vividly about those post-polio patients.
00:02:34I'd come to the clinic, and they'd start telling me stories about how the pain would have
00:02:39exacerbations, and with those exacerbations, they had some fevers, and they had sweating.
00:02:46And I remember going home and telling my wife, Miriam, one night, you know, Miriam,
00:02:52I'm beginning to wonder that maybe that polio didn't completely go away. And in some ways,
00:02:58I was right. Now, in those days, we didn't have blood tests for polio or for viruses. It was a
00:03:05new thing. The other thing that happened during the 1970s and 80s is long past. It's like polio
00:03:12is gone, but another thing that's long past is the really severe cases of what we call post-herpetic
00:03:19neuralgia. Now, people who have had chickenpox are subject to later in life developing herpes
00:03:26zoster, better known as shingles. Now, except in rare cases, shingles is nothing to be too
00:03:34concerned about it today. But back in my early days, it was a terrible disease. We didn't have
00:03:41viral agents, and we didn't know how to use cortical steroids. So, these people suffered
00:03:46greatly. But once we developed those agencies, that kind of went away. Now, the 1980s come along,
00:03:54and we have a disease called AIDS. Now, HIV patients had a lot of neuropathies, a lot of
00:04:00migraines, a lot of intractable pain. And so, we treated that. And that virus, as far as the pain
00:04:07went, behaved a lot like the polio virus or like the post-herpetic virus. And then we go into the
00:04:151990s, and then we start having a lot of doctors saying, you know, there's a disease out there
00:04:23called fibromyalgia, and we think it may be caused by a virus. Now, I'm not going to go into my first
00:04:31experiences with fibromyalgia, but I came to the opinion that about the turn of the century,
00:04:38that viruses had a lot to do with intractable pain. And I thought so for two reasons.
00:04:45Number one, people had today what I like to call multi-site migratory pain. And they had
00:04:53fibromyalgia one day, TMJ the next day, leg pain the next day, pedendal neuropathies the next day,
00:04:59and the pain floated around. And so, I said, you know, the only thing that can do that
00:05:04is the virus. It has to be an infection. And guess what? They thought that back in the 1800s,
00:05:10and they called it auto-infection. So, my observation is not new.
00:05:16The second thing that made us wonder about viruses is that you took two people who had
00:05:21similar injuries. They both fell off a ladder. They both had epidurals. They both delivered
00:05:26babies. But one got severe intractable pain, and one didn't. Why? We had no explanation.
00:05:33No explanation. But I felt that there must be some viruses involved. So, believe it or not,
00:05:39I've been taking viral tests on intractable pain patients now for about 20 years,
00:05:46about 20 years. Now, I'd run into a roadblock about three or four years ago. I didn't know
00:05:52what to think about the viruses. I had a lot of tests. I've written some papers about it. Nobody
00:05:57paid attention to it. In fact, I presented posters on this at pain meetings, and I coined the term
00:06:03the lonely poster. Nobody came to see them. But at any rate, I've got a lot of data on viruses.
00:06:11But it was very confusing because I would find patients who had blood test positive for
00:06:18Coxsackie, herpes, cytomegalus, all kinds of viruses. Rubella was a big one.
00:06:25And obviously, HIV, not HIV, but EBV, Epstein-Barr. Well, here's what happened.
00:06:35About four or five years ago, study number one came out of the University of Cincinnati showing
00:06:43that the Epstein-Barr virus would activate the genes that produce rheumatoid arthritis,
00:06:52systemic lupus, Sjogren's, multiple sclerosis, type 1 diabetes. So I said, oh my gosh,
00:07:00that virus does that. It's the only one we know that does that. I better saddle up and start
00:07:05studying this more. Within a few months, the military came out and showed a big study of
00:07:10about 955 military recruits who had negative serum for Epstein-Barr, but they caught multiple
00:07:17sclerosis, and after that, the serum was positive. But then the kicker comes. Then two things come
00:07:24along that really is why I'm here tonight giving this talk. Number one was studies showing that the
00:07:36Epstein-Barr virus would activate the glial cells in the brain and the spinal cord. And we've known
00:07:44for years that activation of that cell causes the neuroinflammation that knocks out your receptors
00:07:52and converts your pain from intermittent and once in a while to constant. Okay, we talked about that
00:08:00last time, glial cell activation and neuroinflammation. And then here comes the fourth
00:08:05study in a short period of about three years. Some bright research found that the Epstein-Barr virus
00:08:13did produce what's called an autoantibody. Okay, now technically for those of you who are
00:08:21scientifically oriented, the Epstein-Barr virus would reactivate, enter something called a plasma
00:08:27cell, and the autoantibody was formed. And then what's an autoantibody? There's a big part of
00:08:34your lecture tonight. In fact, all of you are going to really have to know about autoantibodies
00:08:42or what it means. An autoantibody means that the antibody isn't attacking the streptococcus
00:08:49or the Lyme disease or COVID that's coming from the outside. Auto means it's attacking you inside
00:08:57the body. Okay, in other words, definition of autoimmune is, it's a process in whereby your
00:09:06own tissues are being attacked, destroyed, degenerated, and causing pain. Okay, so anytime
00:09:14you hear the word autoantibody, you want to be thinking pain because a lot of you out there who
00:09:20are suffering pain, probably most of you have autoantibodies floating around your blood right
00:09:25now as you hear this. Okay, all right, now we're going to take that and what I've done now in the
00:09:32last three or four years, and I know there hasn't been a single day I haven't dug into everything I
00:09:37can read. I've now collected hard blood data on about 150 people who have either arachnoiditis
00:09:45or another severe pain condition. We've analyzed all kinds of data. I pulled out all my old tests
00:09:51to go back two decades. And so we put together a lot of things, and I do have a book coming out on
00:09:57this here in a few days. So that'll be good. You can put all this together, but we're going to
00:10:03cover everything in the book and part of it here tonight. Okay, now we're going to get, we're going
00:10:08to go back to the beginning about what's called the Epstein-Barr virus. I want to show you a picture
00:10:15of a man. Okay, now I doubt that anybody out there knows who this is or knows that he's only got one
00:10:25eye. Okay, this man is Dr. Dennis Burkett. Now, who was Dr. Burkett? Well, in the craziest sort of
00:10:36ways, we wouldn't be having this program tonight if it hadn't been for Adolf Hitler. Now, Adolf
00:10:42Hitler in the 30s and 40s, he and his Nazis wanted to rule the world and exterminate all the Jews.
00:10:49Okay, well, Dr. Burkett was a young military medical officer in Britain, and he joined the
00:10:58British Medical Corps, and he was assigned by the British Medical Corps to Africa.
00:11:06Okay, now it turns out that Dr. Burkett, Dr. Ibsen and I would relate to him because he
00:11:15almost, well, he wanted to be a missionary or a minister, and he was like, your two doctor hosts
00:11:21here, we're probably more minister than we are doctor, but so was Dr. Burkett. Anyway, Dr. Burkett,
00:11:29when he was in Africa, he became very concerned about the poor medical care they had and about
00:11:36the travesty of the children and of the indigenous population. So, after the war, he decided he wanted
00:11:43to spend the rest of his life staying in Africa as a civilian, taking care of these children,
00:11:50and that's what he did. Okay, now, what he did is he was in Uganda, and he was the only
00:11:58surgeon there, and he called himself a bush surgeon, and he was looking after these thousands
00:12:03of kids and what have you, and he started running across children with tumors of their body,
00:12:12mainly of their face. Here's the first one. We're going to take a look at this. Okay.
00:12:22Here's one here in which the tumor is eating away his face.
00:12:28Now, what I want you to know as you look at these pictures, and I hate to put it this way,
00:12:34if this virus can eat those children's face away, what can it do to your intervertebral discs
00:12:40or your arachnoid membrane or your bedendal nerves?
00:12:44Don't think it can't do all of these things to you, okay?
00:12:50It didn't just hit the face. These tumors are the young boy with tumors in his scrotum,
00:12:59another child,
00:13:00a tumor of his leg, and a young girl, tumors of her breast.
00:13:12Now, when Dr. Burkitt saw these things, he called them a sarcoma. They didn't know what they were,
00:13:22really, but he did one thing. He went back to London and presented his findings there in a
00:13:33lecture in London, and you had a very, very bright pathologist by the name of Epstein
00:13:41hearing the lecture. Here's a picture of Dr. Epstein.
00:13:45Dr. Epstein managed to raise a little money, go to Uganda, and arranged for Dr. Burkitt
00:13:55to cut off some of those tumors and send it to him and his assistant, Yvonne Barr,
00:14:00and see if they could find a virus in it. And blow the hole. Now, I won't go into all the
00:14:06technical things except one thing. The techniques that he and Dr. Barr developed are the same ones
00:14:15used today to grow tumor cells in culture and to find viruses in tumors. The same techniques today.
00:14:23Now, they got a lot of awards for this, rightfully so. Bottom line is, they found
00:14:30the virus in the tumors, and ever since, it's been called the Epstein-Barr virus, okay?
00:14:37Now, next week, I'm going to talk about what they did after their discovery,
00:14:42because there are some other heroes involved with this story, all right? But that gives you
00:14:48the beginning. Now, what we're going to do to wrap up this educational lecture is cover a couple of
00:14:53real basics. First off, the Epstein-Barr virus is one of the herpes viruses. Technically, it's
00:15:00called herpes 4. There's herpes 1, 2, 3, 4, 5, and 6, and it's number 4. So, it's a class of a virus.
00:15:09And what happens is this, without going into great details, 80% of adults on this planet
00:15:18come in contact with the Epstein-Barr virus in their first two years of life. And all those
00:15:23little babies there that get the sniffles or a cold, chances are that's the Epstein-Barr virus
00:15:29doing their first activation and entry into the human body. Now, the second group comes into the
00:15:36human body when you're a teenager or a young adult, usually having infectious mononucleosis.
00:15:43Bottom line is, by the time you're age 25, practically 95% of people on this planet
00:15:51have the Epstein-Barr virus, but it's no longer active. It goes into the body and becomes one of
00:15:57about 200 parasites inside the human body that we carry around every day. Now, a lot of those
00:16:05viruses are in the intestines. Some are in our blood or saliva. The Epstein-Barr virus is normally
00:16:11carried in the membranes of your throat and in one of the lymphocytes known as the beta lymphocyte.
00:16:17Okay. So, that's how you… that's the beginning. Now, let me get into what's happened to people
00:16:26who are out there listening to this and get into the medical part. Under stress,
00:16:31anything that lowers your immune system, like a bad cold, delivery of a baby, falling off a ladder,
00:16:42epidural, psychological problems, if you do something that lowers your immune system,
00:16:54the Epstein-Barr virus is what we call opportunistic. It will do what we call
00:17:01reactivation. Okay. Reactivation. Now, that's another term that you're going to need to know.
00:17:10What does it mean? It means that the virus has gone from a quiet, harmless, late-near-dormant state
00:17:19to an active state in which it's floating through the blood, it's causing autoantibodies,
00:17:28and it's entering your tissues and going to cause disease. Okay. Now, I'm going to shut this
00:17:34off because I want to sort of stop right here. When that virus reactivates, it has the ability
00:17:42to do terrible things, just like those pictures. Okay. It is now known today that it's the cause
00:17:51of anywhere from 2 to 4% of the world's cancers. Okay. It'll enter lymph nodes,
00:17:57it'll enter the gastric mucosa, it'll enter the throat membranes, and it will cause cancers.
00:18:06Okay. Because the virus will grow there and the autoantibodies will chew away the tissue.
00:18:12The second thing it does, it takes a normal person and converts a lot of normal people to
00:18:20having an autoimmune disease like rheumatoid arthritis, type 1 diabetes, Sjogren's syndrome,
00:18:26Hashimoto's, lupus, a lot of those diseases. But what we're finding out in our studies,
00:18:35it will activate the glial cells, it will cause destruction of your arachnoid membrane,
00:18:42your small fiber nerves, and it will give you, it can give you every one of the painful conditions
00:18:49that we talk about on this show. Okay. Now, let me make sure you know that there are some other
00:18:54viruses that are secondary. It's sort of like they're the junior viruses to the Epstein-Barr
00:19:00virus. I might talk about that later. But what I want you to know is that the virus normally is
00:19:07there, it can do what we call reactivate, and it can cause these diseases. Now, what do we do about
00:19:14it? Turns out, I want to give you some good news, and then we're going to have to shut up.
00:19:19The good news is, is that a lot of the things that we're doing right now for treatment suppress the
00:19:27Epstein-Barr virus. We didn't know this. But for example, plant-oil vitamin C, your collagen,
00:19:33your peptides, your anti-inflammatories, a lot of your vitamins, a lot of your herbal products
00:19:41actually keep the virus from reactivating, but we have a problem. And that's why I'm bringing
00:19:47this up, and I want everybody to learn about it. And incidentally, I hope some of you get
00:19:50interested and kind of become educators about Epstein-Barr virus. You not only have to keep
00:19:56it from reactivating, you've got to keep the inflammation down, and you're going to have to
00:20:00sort of reduce the viral load. You can't get rid of the virus because it's a natural parasite.
00:20:06That's why with rheumatoid arthritis, we've never been able to cure it,
00:20:10but we can control it. We can do the same thing with CRPS, with adhesive arachnoiditis,
00:20:17for dental neuropathies. We can control these things. We probably can't get rid of that virus
00:20:23totally. So anyway, this is lesson one. You'll be hearing a lot about it because it does act
00:20:30as a catalyst. It is what we call a causative factor. It's not the cause, but it takes a problem
00:20:37and makes it worse. Let me put it that way. But the good news is we've got good measures to keep
00:20:43it under pretty good control. All right. With that, I want to call forward our guest tonight.
00:20:50Before you do, just a quick question. So opiates were free to use in the 1970s.
00:21:01Yes. Where was the opiate epidemic caused by those opiates in the 1970s?
00:21:10We didn't have any opiates. I know, right?
00:21:14You know, in the 1970s, I was, I'll tell you how I got my pain clinic started.
00:21:23I was really more interested in addiction and I had the methadone programs. And we had some people
00:21:29who had severe pain who couldn't get some help. So they went to the methadone clinic. And one day,
00:21:35I had about three street addicts come calling about me. Now, anybody who's half a doctor at
00:21:42all knows how to tell the difference between a hardcore addict and a pain patient. And I had
00:21:48these addicts come to me and say, Doc, we need to talk to you. There are some people in the line
00:21:52getting their methadone and they're not addicts. What are they doing here? I said, what do you mean
00:21:56they're not addicts? He said, oh no, they're not addicts. They're nice people. He said, they're
00:21:59nice people. But, and I, I called him in and I got one guy who was an 18 wheel truck driver. He had
00:22:06more things wrong with him. A couple were housewives. And I talked to him and said, yeah, well, the
00:22:11doctors didn't know what to do about their pain, but we heard methadone help pain. So we thought
00:22:15we'd come to the clinic. And in those days it was friendly. Okay. And, uh, and then, you know,
00:22:20who else brought me most of my patients? DEA, the Los Angeles County Sheriff, the Los Angeles
00:22:27County Department of Justice. They're the ones who got us to do the pain programs and the drug
00:22:33programs. They were partners. As a matter of fact, I was a real, I was kind of a reluctant to stand
00:22:38by. So remember I've been through the days. Don't let anybody tell you that you gotta have this
00:22:45attitude we have in government and in law enforcement today that pain patients and drug
00:22:50addicts are bad people. None of them are bad people. They all need help. And back in those
00:22:55days, I mean, they are the ones who got me to do this. We worked hand in hand and I used to have
00:23:01the narcotic officers train in the clinic to learn how to examine eyes and look for needle marks
00:23:07and, and to recognize who's a pain patient and who isn't. Oh, I remember one time I had some DEA
00:23:14agents pick up a lady in Pasadena. She's about 70 years old. Well, she put on her lipstick and
00:23:20her best wardrobe and a sheriff brought her over and they said, Doc, would you take a look at this
00:23:26lady? She's using a lot of narcotics, but she isn't out on the street. Could you take her, take
00:23:31it over? Well, we did. In fact, we used to take care of the addicts that worked undercover for
00:23:36the FBI. In other words, there was a time in this country when I truly believe that you could go to
00:23:43anybody at a government agency and you found care and love and concern there today, you hardly can
00:23:51talk to them. So anyway, we didn't have any epidemics and we gave better care at that time
00:23:57than we do now. And I never had to look over my back or worry about anything. So things have
00:24:03changed. It's awful. Okay. Well, it makes you wonder if it was the lipstick. There you go.
00:24:13This lady would hardly let them go. She was having more fun all day and so were the sheriffs.
00:24:20Okay. Sorry about that diversion. Yeah. I've had great, great care stories, to be honest.
00:24:28Hope we can bring them back. Let's hope. Anyway, is Denise out there? You're there. All right.
00:24:35Can you hear us all right? Yes. Yes. Okay. Very good. All right. Denise, we've been trying to get
00:24:41you on here for some time here now. Now, we're going to start with a couple of basics and rondas
00:24:46here. I know you've been having a lot of correspondence with her and you know Mark.
00:24:51First thing that people want to know about you, particularly because you've had a little fame
00:24:55and you're well known. Where did you come from? Where were you born? Where were you raised? Tell
00:25:00us something about who you are. Where'd you come from? Well, I like to say that I'm a gal of the
00:25:06globe. I was born in Virginia, but it was pretty much a drive-by birth. My father was in the
00:25:12petrochemical industry and he traveled to various locations to work when we children were younger.
00:25:19We were living all over the place from North Carolina, South Carolina, Washington, Georgia,
00:25:26Maryland, Mississippi. We finally settled in Texas when I was about 12 or 13 years old,
00:25:33for the most part. 12 or 13 years. Okay. Now, were you sick in those years?
00:25:40Was I sick? I didn't know if I was. You know, typical children illnesses. I did have shingles
00:25:49when you mentioned that. That made me think twice because I had not thought about that with regard
00:25:54to Epstein-Barr, but I did have shingles and measles and all those typical childhood issues.
00:26:01I'm going to be 64 years old in November, so we still had those issues in those days.
00:26:09Okay, so you're in Texas. Did you finish school there?
00:26:14Okay. How did you get into entertainment?
00:26:20Well, I didn't originally start in entertainment. I started in the beauty industry. I
00:26:25worked as a cosmetologist for a few years, and I was what they called discovered by another salon
00:26:33that we were doing a hair show with in New York who was very involved in the fashion industry.
00:26:39And I decided to come to New York to start working as a model, and that's how I first
00:26:43became involved in it. Okay. And about how old were you then? I started late in life,
00:26:52according to the industry. I was 21, I think, or 22, which isn't held by anybody else's standards,
00:27:00but in that industry it is or was. All right. Then tell us, take your pick.
00:27:09You got to Los Angeles somehow, and you got sick somehow. Which one do you want to talk about?
00:27:16I went to Los Angeles on an airplane in 1992, and I did that via London where I had been living for
00:27:23the previous 10 years and working. I was living and working in Europe for about a decade and
00:27:30traveling all over the world. I saw someone ask or make a statement about being in Kenya
00:27:37and getting sick, and I've been to India and Asia and all kinds of places and been sick in those
00:27:44places too. So you never know where you're going to pick something up, but I've been worked all
00:27:49over the world. But I came here via London. Were you in the beauty business at that time?
00:27:56No, I was in fashion. In fashion at that time. Okay. All right. And then, so you got to Los
00:28:05Angeles about the same way. You just flew in one day and decided to stay, or how'd that happen?
00:28:10Well, I flew in to see a boy I was interested in, and then I ended up staying,
00:28:18and that's how I came to be here. But if you're asking how did I originally become to have
00:28:26fibromyalgia and Ehlers-Danlos, I will tell you that as a child, I was like every typical child
00:28:35that has Ehlers-Danlos knowingly are not very flexible. And we used to do things like Chinese
00:28:40splits and have lots of sprained ankles and all the various things. And I used to have a lot of
00:28:46headaches as a child, lots of migraines, and I would feel like there was like an ice pick piercing
00:28:53my brain. I'd have tons of those. Well, that flexibility that I had turned into being able
00:29:00to put my head and put my arms through my legs and splay them out and be a human ball with a head
00:29:07and all of those things. And those were part, we had lots of fun, you know, joking around about
00:29:13that. However, in 1987, I was in Egypt and we were doing a world tour for Martini and Rossi,
00:29:22shooting a calendar. And it was six countries and two months per country. And Egypt was right in
00:29:33the middle of the shoot. And on my day off, my life boyfriend had come to visit me there because
00:29:38he had never been to Egypt before. And we decided to go horseback riding on that day off. Unfortunately,
00:29:46I had a horseback riding accident that I will say is probably worse than Christopher Reeves was. I
00:29:51just happened to fall better than he did. Four-year-old black Arabian stallion flying across the desert.
00:30:00And it was a beautiful moment. I remember it like it was yesterday. The sun was setting. It was a
00:30:07beautiful golden balmy, you know, sunset and flying really fast on a horse that was probably way too
00:30:15big for me to be riding because he was, it was like driving a Ferrari of a horse. And we were
00:30:21about to go over a sand dune and I did not want to go over the sand dune because I'd never learned
00:30:25to jump. So I started to rein him right. And he didn't want to go right. And I reined him again a
00:30:31little harder and he didn't want to go. And the third time I reined him again, he bucked up, you
00:30:35know, like you see Trigger doing in the little Western movies, that little horse thing, bucking
00:30:41up on his hind legs. And then he fell to his knees, threw me over his head. I went flying and smashed
00:30:47my face into the sand and rocks and broke my nose, my teeth, my ribs, and compacted my spine and
00:30:53ended up going to the Mieser Hospital in Cairo to have emergency plastic surgery on my nose and to
00:31:00take care of everything. And then good folks that I was shooting the calendar for decided that
00:31:05because I was riding on my day off that their insurance didn't need to cover me. So
00:31:10that I had to finish in that kind of condition. So I did. Needless to say, a few years later,
00:31:18and this is after I had moved to London, that was in 1987. And after I moved from London to Los
00:31:23Angeles in 92, I started having a lot of pain in my hip. And it turned out that I had had
00:31:32bone on bone osteoarthritis with a vascular necrosis. And I didn't have health insurance
00:31:38at the time. So I found this out through an x-ray I had from the free clinic going to
00:31:43Cedars-Sinai. And another incident happened long after that with a laser surgery on my face that
00:31:53resulted in a bad burn. I had to get out of the entertainment business because my face was badly
00:31:58burned and I had to heal that. But I was working in the commodities business and my boss at that
00:32:06time saw that I couldn't walk very well and I was in a lot of pain. And so he got health insurance
00:32:12for me. And I took that x-ray that I had from Cedars to my provider. And, you know, they looked
00:32:20at it and they made me wait for, I think, seven or eight years before they would send me to an
00:32:24orthopedic surgeon. And I was just really struggling with pain, but I don't know if it was good or not
00:32:30that I had to wait because after I had the first hip replacement surgery, I started having hip
00:32:36dislocations. And I had, after the first hip replacement surgery, eight years later, I had
00:32:42eight hip dislocations. And so after the eight happened, they decided to redo the hip replacement
00:32:53and they did what they called a fusion of two types. I put a traditional component in my thigh
00:33:02that was not there before. It was a different, newer model with a larger head and a wider
00:33:10spigot that was in your bone to maintain the integrity of your femoral bone because hip
00:33:15replacements happen every 15 years. And when you're under 50, they try to maintain the integrity of
00:33:21your femur. So they replaced the replacement and I had another 10 dislocations. And what was really
00:33:31hard for me to handle was while I was in the emergency room during those dislocations,
00:33:36I was accused of doing it on purpose to get drugs. What I didn't know was that I had Ehlers-Danlos.
00:33:43And the only reason, and I have you to thank for this, the only reason that I found out about it
00:33:49was watching YouTube videos with you talking to a woman's group one day, and you were listing
00:33:56the symptoms of Ehlers-Danlos. And I said to myself, gosh, that sounds like me. Gosh,
00:34:01that sounds like me. And you went down this list of symptoms. And so I went to one of my pain
00:34:06management doctors and said, I need you to have me tested for this. And it turned out that I had
00:34:13that as well. So that explained the dislocations. But I had also been diagnosed in 2003 with
00:34:21fibromyalgia. And I just thought, you know, before I had the Ehlers-Danlos diagnosis,
00:34:26I thought I had the worst case of fibromyalgia on the planet. You know, I couldn't figure it out.
00:34:31But, you know, the doctors were not very helpful. You know, I just was treated like a woman who was
00:34:38hysterical and complaining about pain all the time and wanting drugs. And it was a horrible thing to
00:34:44experience. But it helped once I had the Ehlers-Danlos diagnosis. So I have you to thank
00:34:49for that. You're welcome. Now, let me go back for just a minute. How old were you? And what
00:34:56were your first symptoms of fibromyalgia? In 2003, I was 33. My symptoms were, I had
00:35:06unbelievable muscular pain, bone pain. I had really bad spasms. I would have my,
00:35:15like a restless leg syndrome kind of thing, spasm. And my legs would spasm so badly, my knees would
00:35:22jerk up to my chest and it would hurt so much because they felt like they were turning inside
00:35:27out from my feet up. You know, it's horrible. I had migraine headaches and just, I was sick
00:35:34in my stomach all the time. I had IBS, you know, all the typical symptoms of the syndrome. Sorry.
00:35:44Yes, sir. On the fibromyalgia, was it mainly around your trunk or legs or just all over?
00:35:50It's all over with me. It's all over my body. I have it in my neck, my shoulders. I have spasms
00:35:56that happen in my abdomen that make no sense. Sometimes I have one that happens in my back
00:36:01that feels like it's my heart. I get them in my legs. I get them in my feet. I get them in my
00:36:07hands. Now, do you still have those? I do, yeah, but I take medication for them, so that helps a
00:36:13bit. Now, have you developed spine disease also? I'm sorry? Have you developed any spinal diseases
00:36:20also? Oh, yeah. I have five compressed discs in my spine and I have, I'd have to pull up the
00:36:29the MRI results, but I have like the ankling, not ankling, the spondylosis thing. I've got
00:36:37the compressed discs. I believe I'm developing the cauda equina syndrome as well, and there's
00:36:45evidence of those in MRIs that I've had from a few years ago, and I'm about to take a test for
00:36:51another one because of an incident that happened two weeks ago with the chiropractor. Well, I guess
00:36:58you better tell us about that one. Well, you know, I've had four hip replacements in my left hip
00:37:08alone, and the third and fourth one happened in the last few years because of an accident that I
00:37:16had in my storage facility where my foot got caught between the freight elevator and the floor
00:37:22because it was not aligned properly. It was a man-operated freight elevator, and I had to run
00:37:29back to my unit. They were closing, so I was being rushed, and my foot got caught between the elevator
00:37:34and the floor, and it just flew me over, and I landed on the hip that had had the two hip
00:37:40replacements, and then it fractured my acetabulum. I had to have a third replacement, and then that
00:37:47one failed. I had five more dislocations, and then they also had the, there was a liner on my
00:37:56hip replacement because, from the third surgery, because I also was struggling with metal toxicity
00:38:03with cobalt and chromium toxicity from the titanium, and so they put a plastic liner on
00:38:10there during the third surgery, and then after the third surgery, because of the dislocations,
00:38:16the liner dissociated and traveled into my thigh, and so they had to fish that out and then redo that
00:38:23again, but they did the fourth one so tight. I've never had a dislocation since, thank God, but you know
00:38:30it did. I'm crooked now, let's just say, like I have a warped leg, my knee tips inward, and
00:38:40my one leg is longer than the other, and it throws my spine out of alignment, and you know.
00:38:47To your doctors now, as far as your working diagnosis, is it primarily Ehlers-Danlos syndrome?
00:38:55From my elders, Ehlers-Danlos syndrome, myofascial pain disorder, and I've got about
00:39:0025 others I'd have to send you this chart. I don't know the names of all of them, but there's
00:39:06quite a few things there going on. Now, I've had a lot of surgeries, and the other surgery I wanted to
00:39:12mention too, because according to what I've learned during studies, if you have Ehlers-Danlos,
00:39:18it's not really advisable to take NSAIDs, and during the opiate crisis, they had taken all of my
00:39:25opiate medications away and put me on NSAIDs, and I had a Valentino syndrome peptic ulcer in the
00:39:34duodenum with a large perforation rupture, and I nearly died. They said if I hadn't come in when I
00:39:40did, I would have died. They had to give me life-saving emergency surgery, and they had
00:39:46ascertained that it was a result of the NSAIDs that had happened, and so I don't know if that's
00:39:55accurate. I've read differently since then, but everything seems to have changed on most of the
00:40:01websites that discuss it, but you know, opiates and NSAIDs and Ehlers-Danlos, so I don't know
00:40:09what the truth is. I'm not a doctor, obviously, but my understanding was because they're not good
00:40:16for someone with a connective tissue disorder. Let me echo that. The long-term NSAIDs in an
00:40:27intractable pain patient, whether you're Ehlers-Danlos or not, is just not something that
00:40:34hardly anybody should do. I mean, okay, the only one that you can take over time is Gatorolac,
00:40:41and that has to be by injection because that's really not an NSAID. They just call it that,
00:40:46but it's not really one. What is it then? Because I have taken it, and it is effective,
00:40:51but what is it if it's not an NSAID? They call it that. It has some anti-inflammatory action,
00:40:56but it's all in the central nervous system. It's really more of an opioid and what they call an
00:41:04N-methyl deacetate agonist than it is anything else. It has a lot of anti-inflammatory actions,
00:41:11but it's been mislabeled. Okay.
00:41:13I mean, Tramadol was also not originally an opiate, was it? And now it is.
00:41:20Yes. It's got a lot of central activity too, and in some people it works very well.
00:41:25Okay. So, you have to kind of go with one, but oral NSAIDs, other than very short-term use,
00:41:31I don't think they have any place in Ehlers-Danlos syndromes or arachnoiditis or RSD.
00:41:38I don't think they have a place, yeah, because first off, they just don't do that much for you,
00:41:43and secondly, they've got a lot of complications. Okay. They're good for intermittent athletic pain,
00:41:50dental extractions, but not for long-term use, which you're going to have to have.
00:41:55Mark might want to weigh in on that also.
00:41:58My understanding now is that they're actually worse for you than opioids. Is that accurate?
00:42:03Well, opioids, absolutely. Opioids, and this has been our gripe for some time,
00:42:13low-dose or even high-dose opioids, and once they're stabilized, and
00:42:18they've had almost no complications in the long term. We're among friends here now. The reason
00:42:26why people don't like opioids is they work too darn well, and they keep people out of hospitals,
00:42:31keep you off the street, keep you well, keep you working. I mean, opioids have been a good
00:42:36Lord's blessing. Why do you think they're growing out there in the field? Okay. So, opioids, yeah,
00:42:44they've got their problems, but not near as many as NSAIDs, for example. Yeah.
00:42:50I don't think they have that many problems, personally. I think the problems come from
00:42:55the people who abuse them, but I take them every day, and I wouldn't do the things I do
00:43:01if I didn't take them. Great. What would you do if you couldn't get them?
00:43:08Well, I really don't know. I can tell you, when I wasn't having them, and I was in the worst
00:43:15pain states in my life, I was actually actively researching physician-assisted suicide,
00:43:21because it was that bad. I'd had times where I couldn't sleep for as long as 11 days,
00:43:29because the pain was so bad, and you know, at that point, you're hallucinating, and you know,
00:43:34you're going out of your mind. There was one time I remember going into the emergency room,
00:43:41and the doctor was talking to me, and I couldn't comprehend what he was saying. My mind was so gone
00:43:46because of the lack of sleep and the intense pain that I was suffering from that the words would
00:43:51come out of his mouth, and they would become like scrambled letters in the air, and then I could not
00:43:56comprehend what he was saying, and I would have to ask him to repeat what he was saying so many
00:44:02times, and I still could never understand, to this day, what he was saying at the time. It was
00:44:07that bad, and I just thought, this is no life, you know. I'm just taking up space here. I'm wasting
00:44:14air, you know, and I talked about it with my psychiatrist, and I was very, very serious about
00:44:21it. Not that I'm a suicidal person. I'm not. Who wants to die? No, I don't, you know. I want to
00:44:28live, and given the life that I've had, which has been magnificent in the past, you know, why
00:44:34would I want to? You know, I want to continue to have that wonderful life, and it was gone, so.
00:44:40How old are you now? You're 64, you said? I'm going to be 64 this November. 64. Well, you've done
00:44:47something right. You've done a few things right. Let me give you an interesting statistic.
00:44:5410, oh, 10 years ago, or before we really started understanding Eilers-Danlos and what to do about
00:45:00it, do you know that few people lived past about age 48? That was about the maximal length of time,
00:45:08and Elvis Presley, his family's a good example, probably. They had it in their family, and they
00:45:15all died in their 40s, but they were not unusual. Anyway, Rhonda, are you here somewhere?
00:45:24I know you guys have been having some conversations, and you both have managed to survive,
00:45:30and are you there, Rhonda? Well, I don't see, I don't hear her.
00:45:41Anyway. Do you hear me, Dr. Tennant? Oh, I can now, yeah. Okay. Yeah. Okay.
00:45:50You guys have been having some conversations, and you both have made it, and
00:45:56come from the same disease background. Same part of the world, too.
00:46:03We're a few towns over in Texas. Oh, my gosh. Rhonda, have you got some questions or comments
00:46:12about our guest here? Hey, baby girl. Can you hear me? Yes, ma'am. Yep. Can you see me? Great.
00:46:27You still there, Rhonda? Oh, you're muted, hon. She's muted. It's okay. Okay. All right. Am I
00:46:35unmuted now? You are perfect now. Can I just first say to everybody that this woman is such
00:46:42an amazing woman. Rhonda, I was having such a terrible day yesterday, and I have her to thank
00:46:48for getting me through it. This beautiful soul is like warm butter, honey, and maple syrup all
00:46:55together when she talks to you. It's so soothing. She just oozes warmth all over you, and I just
00:47:03love her. The short time that I've known her, I've grown to love her because of it, and I just
00:47:08want to say thank you, Rhonda. Okay. I'm here. Denise, you're very welcome. It's just my pleasure.
00:47:20That was very sweet and very kind of you to say that. It's my pleasure to help you through
00:47:26a difficult day. We've all been there. We all know what the depths of this disease can do.
00:47:35Denise, you've got an amazing spirit. Thank you. Beautiful, uplifting attitude.
00:47:45I've enjoyed getting to know you and hearing about your very lengthy history.
00:47:49It's just been one thing after the next, and my God, I don't know how you've done it.
00:47:57How have you done it? Tell us, how have you done it?
00:48:02You know, I just try to stay positive. I'd like to say that I try to remind myself and stay
00:48:10militant in my thinking that it can only get better if I try, and if I try to think
00:48:19positive thoughts, if I try to, like you do, help other people. Then for a little moment of comedy,
00:48:27I have a couple of tools that I use to help me feel better when I don't feel well. This is one
00:48:32of them, and I suggest every lady do this too. I have a collection of tiaras to remind myself
00:48:40that I'm a princess or a queen, whichever you prefer. That always gives me a giggle and helps
00:48:46lift my spirits, so when I feel bad, I'll put on a tiara and try to dance around the room,
00:48:51you know, but on eBay, ladies, so just go get yourself a tiara. I'll cheer you up to no good end,
00:48:58make everybody think you're crazy, which is always fun. I'm a big God girl, and I am a big believer
00:49:11in gratitude, and so I always try to remind myself to be grateful and that there are other people in
00:49:18the world going through so much more than I'll ever go through and that have had so much less,
00:49:24and so I always try to remember that, and I try not to indulge in feeling sorry for myself
00:49:31when I have you on the phone, which I obviously did yesterday, but it was a particularly bad day
00:49:38yesterday, but, you know, trying to put others before you, not that you don't deserve, you know,
00:49:46attention or help. We all do, but it feels good for me anyway to do nice things for others and to
00:49:54practice random acts of kindness. I do that a lot, you know, so that helps me. You can hear me as
00:50:02Dr. Ebsen there. Yeah, I'm here, and I am very grateful to Denise to endorse the policy of militancy.
00:50:15I got that going on. Thank you. It's important, you have to,
00:50:23and you have to just tell yourself when you're in your bad days, you will feel better if it's
00:50:3160 seconds, if it's 60 minutes, if it's, you know, 60 hours, you will feel better. You just have to
00:50:39remember that and then find something to do to help you get there or someone to help you get there.
00:50:46I'm in a program where the distinction is gratitude is the antidote to self-pity,
00:50:55and that a lot of us who hurt, as soon as you start hurting, you start lurking in these negative
00:51:00spaces in your head and engage in thinking, thinking, and it makes it worse, not better.
00:51:07So, I think what you've nailed is the core principle for those of us in pain
00:51:13is to find something or a list of things to be grateful for.
00:51:22Mark, since we have you on there, we don't have a lot of time left, but Denise, thank you so much.
00:51:29We're going to let, Mark's got a couple of things that we want to get out tonight. Mark, are you
00:51:34there? I'm here. Give us the report on the young lady in Maine, and then if we have a couple of
00:51:41minutes, I have a couple of specific questions for you. I have a patient in Maine who I've been
00:51:46caring for about a year. She went through three doctors in Maine. She takes a lot of pain
00:51:52medication, and she's had a lot of catastrophic stuff. One of the catastrophes was two weeks ago,
00:52:00she was told that her pharmacy would no longer fill her prescriptions, and we've been studying
00:52:07the idea of getting an injunction or some way to, it seemed to me that when she got that deadline,
00:52:16she became a death row patient, and I wanted to approach this as if we could appeal to the
00:52:22government or to the governor of Maine for a stay of execution, essentially, and I love the idea.
00:52:30I thought it was brilliant. That's what most of my ideas are, 80 percent are, and then we
00:52:38lined up an attorney, John Flannery, and he's been looking at it as a potential case, but the problem
00:52:43about getting the legal system moving is it doesn't respond rapidly or in time for Brandy, so
00:52:52just so you know, she has another week's worth of medicine, and this is the way it's been for a year.
00:52:56She finds somebody to fill a prescription out of compassion. Some other pharmacist at the same
00:53:00pharmacy hangs up on me when I call the prescription in, so she's got another week. She's
00:53:05going to get another week. She did appeal to the, she filed a complaint with the Maine Human Rights
00:53:13Commission, and I thought that was a positive thing until she told me today that the Human
00:53:18Rights Commission can take as long as two years to make a ruling. Well, she doesn't have two years.
00:53:23She has two days, so we're scrambling to find a way to find who can treat people
00:53:34and fulfill the commitment that the CDC Opioid Rapid Response Team
00:53:41claims that they have, that they'll help people, and so far, I'm sure there are others helping
00:53:47that are stealth, but so far, I'm the only one I know of that's doing that, and they're not
00:53:53doing it, so we have some legal options, some political options, some practical options.
00:54:01We're doing all of those things, and each time we make some sort of unprecedented idea, it seems
00:54:07radical to file a lawsuit, but on the other hand, it seems radical to let someone die a
00:54:14painful, agonizing death due to abandonment, and so that's where we stand with Brandy,
00:54:20and Brandy kind of, I'm calling her our Erin Brockovich, so she's committed
00:54:28to not only helping herself stay alive, but help the rest of us make the kind of narrative
00:54:35breakthrough that's necessary in our culture so our citizens are not cheering when we're suffering.
00:54:42That's all.
00:54:44Mark, you and I discussed earlier today that it's around, as you go around the country,
00:54:52you see some states that are doing a good job of treating people,
00:54:56and now we've had two or three new developments that I want to make a preliminary comment now,
00:55:03but I'd like for next week, one subject I'd like to discuss is we have some areas in the country
00:55:10in which there's a big push to put everybody who needs an opioid on buprenorphine.
00:55:16Okay.
00:55:17In other words, that's right. We have some other places in the country in which major
00:55:21prestigious institutions are just walking in one day and saying, our doctors will no longer
00:55:28prescribe any opioids to anybody for any reason, and we have some of that going on.
00:55:35We need to have sort of a strategy that might have to fit different places, but
00:55:44I'm asking you and I'm asking everybody else this week to think about what are we going to do,
00:55:50and what practically, and from an advocacy point of view, and I've been afraid of this thing to
00:55:57where doctors are now employees, so the employer walks in one day and says, you doctors can no
00:56:02longer prescribe opioids. It's here in some places. Do you have a closing comment?
00:56:08Yes. Your doctor doesn't work for you anymore. That is for sure true, and what that means is
00:56:15you've got to work for you, and every patient I know in these circumstances needs an advocate,
00:56:23preferably male, in the exam room with them, and an attorney, and to leave breadcrumbs
00:56:31for your loved ones to follow to file wrongful death cases against the people
00:56:37that are perpetrating this. The main perpetration, of course, is the collapse of addiction,
00:56:45addiction medicine with pain medicine. Buprenorphine, I think, might be a pretty
00:56:51good drug for addicts. It's great for withdrawal, and it's lousy for pain relief. I've only seen
00:57:005% of my patients get any pain relief from buprenorphine at all, but since the people that
00:57:04are dispensing it and pushing it think that we're addicts and can't make the distinction between a
00:57:10pain patient and an addict, they're going to insist that we use an addiction medicine like
00:57:16buprenorphine for our pain when it doesn't work for that. I just had a patient, and I'm reminded
00:57:23of it, is one of my patients was going to a pain specialist in Billings, Montana. He retired. They
00:57:30hired a new guy. The new guy comes in, and this is a pain medicine-trained guy, and he puts the
00:57:35patient on Suboxone while they were still on opiates. Now, the immediacy of that and the harm
00:57:41of that is kind of crazy-making, so we'll get into that in detail next week, but yeah, I think
00:57:47I really addressed that. All right. Well, thank you so much. Thank you, Denise. As you're with
00:57:55us, you gave a nice, caring presentation. I really appreciate it. Rhonda, thank you so much.
00:58:01Jamie, as always, you're our hostess with the mostest, and we appreciate what you're doing.
00:58:06We'll sign off tonight. We'll see you all next week. Thank you, Dr. Tennant. Thank you, Dr. Norm.
00:58:13I see that Dr. Norm is there to say something. Yeah, I was saying Dr. Norm had something he
00:58:21wants to add. Well, I think what's missing out of this discussion, I'm going to go back to
00:58:26where we were using the word opioid, because when I came out of school, opioids were something
00:58:32entirely different in that they were synthetics, so we referred to them as narcotic analgesics,
00:58:39and so I hadn't heard that word mentioned anywhere in this discussion,
00:58:43but I want to go back to something that's very interesting. I stumbled across it in a conversation
00:58:49and a person I met was, where do we get this term opioid? The opioid term itself was developed
00:58:56actually by a pharmacist who worked for the DEA, and some people know him, who wanted to be an FBI
00:59:03agent, but he couldn't, and he failed. Then Joe Rannisuzzi. What Joe Rannisuzzi does is he
00:59:11manipulates this term opioid and turns it into a pejorative, and here's where we are today.
00:59:20If you go back and look at the Libby report that we have, we even have morphine and codeine
00:59:27are opioids. In fact, they're not. They're opiates. Opioids are your synthetic products
00:59:34that are getting, that were derivatives of the phenanthrene ring. The other point I want to
00:59:44talk about is the use of suboxone. That comes out with the Andrew Killatney kind of thing, because
00:59:50it's all about money. The fight between, that comes from the Sacklers and the
00:59:58folks who had investments with the suboxone makers and those sort of things. I see that
01:00:08when people start using some recommended suboxone, that is where we're now, between this
01:00:13legal struggle between the two companies, the guys who made the suboxone, the OxyContin,
01:00:21and the guys who were invested, like Killatney and Prop guys, into suboxone. I'll just leave it
01:00:29at that. Thanks, Norm. Very good. Thank you, Doc. Great work. Was Joe Rannisuzzi in the 60 Minutes?
01:00:38Well, Joe Rannisuzzi, yeah. Joe Rannisuzzi, I debated Joe Rannisuzzi. We were at the National
01:00:46Dental Association meeting, and his pharmacology was all off. In fact, it was off because he was
01:00:59then saying something like, Gabby Pettin was so dangerous and all sort of thing.
01:01:06The other thing is that it seemed that he wanted to be, he said that doctors, if you look at the
01:01:15living report, they were getting ready to get rid of the DEA, and their numbers were bad,
01:01:22and so they needed to explore a different avenue in order to get some results. And of course,
01:01:31Rannisuzzi comes along and says, well, you know, physicians and pharmacists, they dispense
01:01:38narcotics. We'll call that opioids, and then we'll go from there. And it was all about,
01:01:45if you look at the living report, it was all about the mission failure of the Drug Enforcement
01:01:52Agency. And what the living chief says, we go where the money is, and the guns aren't,
01:01:59we get all that stuff, getting all this stuff happening at the same time. And it just ballooned
01:02:04and ballooned and ballooned. Now, this is about acid for a person, not about, and we've turned
01:02:10the word opioid into a pejorative. The issue here, and I see it, is we still,
01:02:19what people are failing to present on news media is pain, and pain is real. And one of the failures
01:02:28of news media, I want you to know something very peculiar that I've noticed, okay? You look at,
01:02:32if you go to a morning show, the morning shows, particularly on radio, and you look at the nature
01:02:39of the hosts. And I looked like, for the first morning, from six o'clock to 12 in the afternoon,
01:02:49if you look at the nature of the hosts, you'll find that most of them are comedians, all right?
01:02:55And what I've noticed is that what the DEA, what these guys, law enforcement, very effectively
01:03:02at producing their media, or distorting their false narrative, they use these guys who are
01:03:08famous comedians. Look, Bill Maher, for example. I mean, he's a guy, man, oh man, you know,
01:03:13but Bill Maher's totally distorted. John Fuglesang is another one. Greg Carr, these are all comedians,
01:03:20but they have major market shows, talk shows, in the community. And their word means more than
01:03:30Mark Ibsen ever will have in his training. Mark Ibsen could never get past a Bill Maher. I mean,
01:03:38well, doctors have killed thousands and thousands and thousands of patients, stuff like that.
01:03:43It's rubbish. It's absolute rubbish. All right, so I don't want to scare anybody any more than I
01:03:48am. That's my observation. Thank you. Thank you so much, Denise. We so appreciate your time being
01:03:55with us tonight. Thanks so much for everyone that's been all through this with us. Thank you,
01:04:01Dr. Ibsen, Dr. Tennant, and thank you God for being with us. And until next week,
01:04:07please stay alive and remember you're not alone. We're looking forward to another good show.
01:04:12Thanks again. Take care. Thank you. God save the pain warriors.