Multi-system Inflammatory Dis-ease & Spinal Inflammatory Dis-ease | They say it's all "in your head" - Scientifically, it is! | Glial Cells forming inflammation which destroys mechanisms that shut down pain | AA causes cancer, dementia, and more. | US Army Medic Dr Forest Tennant | Weapons in Treatments & self-help Techniques | Peptides: KPV, ARA-290, BPC-157/TB-500 | Contraindications of Implants with EDS patients: Herniations, ruptures, aneurisms due to EDS collagen deficiency, connective tissue disorder
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00:00Good evening and thank you for joining us for episode five of season four of Doc Talks with
00:06Dr. Forrest Tennant and friends. We have a special guest tonight and we have a lot of people that are
00:11here with us this evening. We have a full boat tonight and a very great show ahead of us looking
00:18forward to a lot of great surprises. So Dr. Tennant, I think we have Dr. Ibsen here with us
00:24as well tonight. Happy that we could all get together and we'll go ahead and turn it over to
00:28you, Doc. Thanks so much. Thank you. I'm delighted to be here and know that our guests are here and
00:35I hope Rhonda's here somewhere. We were planning on a couple of things to mention. Last week or two
00:42I made a point of using the term constant pain to really let people know that's what we really mean
00:52when we use the term intractable pain. Now let me talk about terminology for just a moment so we're
00:59very clear because you're looking and you're right in the time. If you forget the opioid controversies
01:06and forget all this other stuff and you go to the science that's going on, we're getting ready to
01:13change concepts, terminology, and a lot of things going forward. Now those of us in the research
01:21community, we have almost no connection anymore with universities or NIH because they don't do
01:30research anymore, not in problems like pain or in common ambulatory problems. Now what's happened
01:39over the centuries, there's always been, you know, thousands, millions of chronic pain patients. Most
01:45of us, if we get to be age 60 or 65, we've got something that's chronic and painful. We've got a
01:51bad bunion. We've got a neuropathy, a carpal tunnel, a fasciitis, a headache. We've got something
01:57and that's just life. But there's always been a subgroup of patients that have had different
02:05names over time. Interestingly enough, in the 1700s, the term for this subgroup of patients
02:13that had constant pain was called persistent pain, and that term has been brought back even
02:18in recent times. Other terms that have been used to describe this subgroup of pain have been things
02:25like high impact lately, central has been used. The term today that is most used to identify this
02:35subgroup of people is neuropathic pain. Now it doesn't have, these terms don't have anything to
02:42do with what the real facts are. The facts are these. We really have among chronic pain two
02:49groups. We have intermittent periodic pain at which, you know, your headache comes and goes,
02:56your arthritis flares up three days a week, and your bunion flares up twice a month. I mean,
03:01that's chronic pain. But then you've got the constant pain. That's when it never goes away.
03:07It's 24-7, and most people watching this have chronic pain or near chronic or constant pain.
03:13That means unless you're asleep, you feel the pain. It's there. It doesn't go away.
03:19And what's interesting is that most people know almost to the day and the month, sometimes the
03:26hour, when their pain shifted from being once in a while to constant, okay? They know the day,
03:34the time, the event, the place, okay? And so that's one thing. Now the other thing about
03:43constant pain, constant pain means that something in the nervous system has been damaged,
03:51doesn't work anymore. Because pain comes on through electromagnetic energy in the body,
04:00and when the pain is healed or the disease gets under control, those mechanisms shut down the
04:06pain. In fact, I like that term. It's pain shutdown. It stops it. Now, if you have pain
04:12that's going on for a long, long time, what this means is you've either damaged the nerve,
04:19it will no longer conduct electricity. It's gone. The common condition of that today is
04:26small-fiber neuropathy, which gives you the pedendal problems, the burning mouth, the burning
04:32feet, or the pain all over, which I'm going to come back to in a couple of minutes. The other
04:36causes of constant pain are nerve entrapment. That means that the nerves are entrapped in a mass,
04:44in a fibrous mass. That mass is usually inflammatory with adhesions, and it may damage
04:53the nerve or it may just cut off the electrical transmission. Now, that's adhesive arachnoiditis.
04:59Adhesive arachnoiditis is really an entrapment of cauda equina nerves inside the spinal canal.
05:06It's a nerve entrapment disease. And then the third reason that you can get constant pain is
05:12in the brain, the systems, and you're going to hear something called the glial cell,
05:20which really has two small cells, microglia and astrocytes. You don't need to know that.
05:24But the term glial cell, you probably want to know. And you also want to know that glial cells
05:30are what cause inflammation and adhesions in the brain. And if you get glial cells that form
05:38inflammation, and that inflammation will destroy some of your neurotransmitter receptor systems.
05:46Put simply, it'll destroy some of the mechanism that shuts down pain.
05:52Now, one of the things nobody likes to talk about is we have all kinds of brain scans
05:56documenting this. We have all kinds of chemical studies documenting these things.
06:02To hear, I every once in a while hear if somebody has terrible constant pain, they can't get relief,
06:08they can't get their opioids, and somebody says, it's all in your head.
06:12You know, it's all what may be in your head, but it's neuroinflammation wiping out receptors
06:18is what it's doing. And so it's not psychological, and it's not something that you can wish away.
06:23Or if you just shape up or take a little Tai Chi or go to a therapist, it's got to go away.
06:30Constant pain is a medical problem. And it takes a lot of medicine and a lot of non-medicine
06:37measures to control it. Now, what I'm going to do is take you on to chapter number two, okay?
06:47How do you end up in the body getting constant pain? It was a mystery for a long time. It's
06:53been a mystery for centuries. I mean, Hippocrates wrote about it four centuries before Christ was
06:58born. So we really don't know, but we now know, okay? Now, to get intractable pain,
07:06you have to go through a pathologic group of steps. I call it a pathologic pathway.
07:13You don't just wake up one morning with intractable pain. You start off with problems,
07:20diseases, genetic conditions, what have you, and you go through a pathologic pathway to get
07:27to having intractable pain. And certainly, if you end up with a disease like adhesive
07:33arachnoiditis, you're going to have a terrible pathway. That's the end. So I want you to think
07:40of arachnoiditis in one sense. It's the bottom. That's when the pathway ends. Now, when you hit
07:48adhesive arachnoiditis, unfortunately, you're also a sitting duck for cancer and dementia,
07:54paralysis, early life, a whole bunch of things. But that's at the bottom of the pathway.
07:59The pathway starts up here. Now, let's start for just a minute
08:04on something that we've now learned. We talk in terms, and I'm going to now take you back a little
08:13bit. When I first started treating intractable pain patients, and it goes clear back to my
08:19army military days in the late 60s and 70s, at that time, for about a 20-year period,
08:26for a generation, people with intractable pain had a lot of diabetic neuropathy, for example,
08:33a lot of sickle cell disease, cancer, or post-cancer neuropathies. I remember treating
08:40a lot of people who had post-polio neuropathies that make a big deal about long COVID. Well,
08:45we had long polio. We had long herpes. We had long everything after viruses. But
08:53everybody today has got to make a name for themselves or make about one of the two. So,
08:56anyway, also back in those days, we had conditions like abdominal adhesions.
09:03We had a lot of slow-growing cancers like melanomas or lymphomas that we treated.
09:10Interstitial cystitis was a terrible problem in those days, chronic pancreatitis.
09:16What I'm getting at is that we had, in those years, we would have intractable pain or constant
09:25pain and a single cause. Okay? Now, I want everybody to get that. Intractable pain,
09:32one cause. Chronic pancreatitis, abdominal adhesions, post-polio neuropathy, lymphoma,
09:39oh, one situation. One cause, intractable pain. Now, over time, what happened was we started
09:49developing treatments. By we, I mean the scientific medical community. A lot of good people
09:54contributed a lot of good research and a lot of good efforts to come up with treatments for these
10:00single conditions. And nobody talks about the successes of medicine these days because everybody
10:06knows it's a little dysfunctional and very political, very expensive. We all know those
10:11things. But what's not appreciated is that we've now got specific treatments for sickle cell disease,
10:18interstitial cystitis. We've improved treatments for diabetes, for hypercholesterolemia,
10:24chronic pancreatitis. We've got all these biologics now for everything from regional enteritis and
10:32ulcerative colitis and rheumatoid arthritis, Sjogren's disease, type 1 diabetes. So,
10:39we've got a lot of treatments that may not have cured everybody, but it has brought
10:44the pain levels way down. We talk about how opioid use is way down, and I always like to say that's
10:51due to regulations or something. In reality, doctors just don't have to use as many anymore
10:57because we've got treatments for a lot of the problems that we had before. But now here's what
11:04I want to get across to you. We now have two major causes of intractable pain, okay? Two major causes,
11:17and I'm going to have to talk to you about this. And this means that unfortunately, we're going to
11:22have to adopt some new disease labels and some new concepts, okay? And it may sound a little
11:29complex, so get your tennis shoes on, folks. Now, first thing we're going to do, we're going to talk
11:37about something called risk factors. In the past, we used to call these causes, but they're not
11:44really the causes of the intractable pain. They're risk factors. They put you at high risk to develop
11:51adhesive arachnoiditis or constant intractable pain. Now, I'm going to talk to you about what
11:58those risk factors are. There's only a few of them, and I know I can see people right here's
12:03faces, and I know some of you have these things. First off, your connective tissue diseases,
12:09your Ehlers-Danlos syndromes or Marfan's, what we call today spectrum disorders. And so that
12:18genetic group of collagen deficiency disease puts you at high risk to develop intractable pain,
12:27not the day you're born, but maybe 30 or 40 years later. Okay. Second big thing, trauma.
12:36Now, that trauma can be to your head, it can be to your spine, or it can be to your skeleton,
12:43okay. I've had people for years who'd tell me, you know, I didn't have a Tarlov cyst,
12:50or I didn't have fibromyalgia, I didn't have any pain, but my auto accident was last year,
12:55and my pain now started this year. Okay. So any severe trauma becomes a risk factor,
13:02not the day you had the accident necessarily, but maybe a year or two later. Okay.
13:08Third risk factor, strokes. Okay. People who get strokes do something that's terrible, and that is
13:17they bleed. Maybe it's an aneurysm, maybe it's a clot, there's any number of causes of strokes.
13:24Any kind of brain cancer or brain tumors are also in the same category. It wipes out
13:29enough of the brain tissue that houses your shutdown neurotransmitters and receptors.
13:36So stroke, and it's been well documented that you develop what I'm about to talk about in a minute
13:44after strokes, may take a few months or so. Another one, autoimmune disease. Okay. Now,
13:51autoimmune disease, I want to make something very clear, because the definitions of autoimmune
13:57disease need to be known to the lay public, and even a lot of doctors are confused by this.
14:05A lot of things are being called autoimmune diseases that are not autoimmune diseases.
14:10An autoimmune disease is a disease that creates what we call an autoantibody.
14:18Okay. Autoantibody. Now, there's about 100 autoimmune diseases. Believe it or not,
14:24there's about 100. Type 1 diabetes is one. Rheumatoid arthritis is one. Sjogren's syndrome
14:30is one. Oncologic spondylitis is one. Multiple sclerosis is one. All these diseases have
14:37what's called an autoantibody. What is an autoantibody? That's a piece of globulin,
14:42a protein in your blood that wanders around causing inflammation in tissues,
14:51and that inflammation, of course, is followed by tissue destruction and pain. So autoimmune
14:57disease. There's about 100 of them out there, and the common ones you're familiar with, lupus,
15:03type 1 diabetes, multiple sclerosis. There's also one called mixed connective tissue disease that
15:09actually is more common than people think. And then the last risk factor are people who are
15:16born with anatomic spine deformities or abnormalities. These are things like scoliosis,
15:23severe spondylolisthiasis. Maybe they've developed spinal stenosis. So some
15:30anatomic spinal abnormality puts you at risk for developing a generalized intractable pain,
15:38actually. Okay. Now, you've got these risk factors, okay? Now, what happens if you have
15:46one of these risk factors? What happens is you develop something. Now, grab onto your chairs.
15:55You're going to need to start calling this inflammatory multisystem disease, okay?
16:03Inflammatory multisystem disease. Now, what does that mean? That means that you have
16:12some kind of inflammatory generator in your body causing pain in different systems,
16:19in different tissues, and in different organs, okay? Now, let me explain what that is.
16:26And if we don't go much further today and we talk about this alone,
16:30you're going to have to bank this. Now, what do I mean by multisystem inflammatory disease? It's a
16:39disease. It's not a syndrome. It's not a disorder. It's a disease. That means that you've got some
16:45inflammation or an inflammation that's being caused by either a virus that's reactivated,
16:54usually Epstein-Barr, or one of the autoimmune diseases. And it's going to start causing
17:01inflammation, for example, on your muscles. We call that fibromyalgia. Maybe it's pain in your
17:07head. We call that migraine. But that's really inflammation in your brain. Maybe we call that
17:13pain in the wrist. That's known as carpal tunnel. Maybe it's in your bowel. We call that inflammatory
17:19bowel disease or irritable bowel. Maybe that's periodontitis, which means your teeth are going
17:25to start falling out. Maybe that means that your face is hurting. Maybe you've got what's called
17:32TMJ or trigeminal neuralgia. Maybe your feet are hurting. We might call that plantar fasciitis,
17:40or your joints are hurting. We call that bursitis. In other words, there are about 10
17:49known with names conditions that really are just symptoms or complications
17:57of the disease now known as multisystem inflammatory disease.
18:03Okay? And I want everybody out here now who's got arachnoiditis, who's got RSD,
18:11whatever you have, if you've got it or intractable pain, I want you to think back.
18:17What risk factors did you have? And then do you have this multisystem inflammatory disease?
18:25And I'm going to assure you, you probably do. Think back. A lot of you can tell me that today
18:30you got your fibromyalgia. Sometimes you can tell the day your back started hurting when your disc
18:36degenerated. Okay? Now, one other thing I want to cover, and I'll come back to that next week.
18:45You've got your multisystem inflammatory disorder, but you also may have another disease,
18:52and that's going to have to have a name also, and that's going to be called spinal inflammatory
18:57disease. And spinal inflammatory disease means that you have got inflammation throughout multiple
19:04tissues in your spine. Everybody thinks in terms of just disc disease. It goes long beyond that.
19:13You not only have got inflammation in your disc, you've got it in your vertebra.
19:17That's your back. You may have it in your arachnoid. You may have it in your dural layer.
19:23If it's in your arachnoid, one of the first things you might get is a tarlof cyst,
19:27or you may start leaking spinal fluid. There's something called the ligamentum
19:31flavum that gets inflamed and thickens. Bottom line is, and here I'm going to move on because
19:39I want to talk about some peptides for a second. Today, we've had to change our terminology
19:47and our approach to intractable pain. You have two big causes. One is inflammatory
19:54multisystem disease, or you have spinal inflammatory disease. Okay? And when people
20:02tell me they don't have a diagnosis, it needs to start with one of those two. Okay?
20:08And that's what you're going to have to understand that most of the things now
20:13people think they have are really part of a bigger disease. Okay? So you're going to have
20:20to think about all this now for a little bit. And as time goes on on these podcasts and in the
20:25writings and things that certainly I and my associates are going to be doing, you're going
20:30to hear us now not going to talk much about fibromyalgia or slipped discs or arachnoiditis.
20:36We're going to talk about inflammatory multisystem disease, or we're going to talk
20:40about spinal inflammatory disease. Okay? That's what's happening. And you're going to hear us
20:47now talk a lot about what do you do about it. Well, first off, you sure want to try to tackle
20:52this pathway before somebody ends up in bed and is paralyzed and their bladder doesn't work and
20:59they're on four opioids and can't get help and in desperate because that means they've got too
21:04much tissue damage throughout the body. So for those people who are in that condition,
21:11we're not going to forget anybody. We want to get help, some palliative care help. But
21:16the thrust is we've got to have to try to treat this, these diseases at the earlier stages. So
21:23next week and what we're going to get a little more into the new research on Epstein-Barr virus
21:27and on autoimmunity diseases and tell you a little more what we can do about those.
21:34One of the things we're going to do about it right now is I want to address something about
21:37peptides. We've talked a lot about peptides on this program and there are about 60 peptides
21:46on the commercial market. Okay. That's 60 of them. Three of them have emerged as being popular among
21:54people with intractable pain. One is KPV. We started talking about that here. That's a
22:01combination of three amino acids, proline, valine, and lysine. And we have one called AR290.
22:11That pretty well grows nerves and that's becoming quite popular. But the big one that's really
22:16popular is what I want to talk about for a couple of minutes because frankly, we're getting some
22:23really, I don't want to say rave reviews, but we're getting some very positive feedback on
22:31the BPC-157, particularly when it's combined with thymosin beta-500. Okay. Now I want to
22:40talk about what that is, these two together. First off, what is thymosin? Well, thymosin
22:48is a peptide that's made in the thymus gland and maybe some other parts of the body,
22:53but it's also a hormone. So it's both a hormone and a peptide. It doesn't grow tissue so much,
23:02but BPC does. BPC grows tissue. Thymosin beta-500, I believe the major thing it does
23:13is activate T-lymphocytes, which kills off viruses. Okay. When you take the two together,
23:23you got a good thing going. It's not going to help everybody, but you're going to restore some,
23:29regenerate some tissues. At the same time, you may be suppressing or controlling the
23:35Epstein-Barr virus or the cytomegalis virus or the herpes-6 viruses. And you're going to need
23:42to kind of think in terms of that going forward. Our studies are showing, like a lot of the other
23:51ones, that the Epstein-Barr virus, we found out of 110 erythesia of arachnoid vitis patients,
24:00that every one of them have inflammation being caused by Epstein-Barr virus. Every one. And it
24:06made sense because that's the bottom of the barrel, you might say. Other conditions may
24:12have other viruses or Lyme or something contributing to the inflammation. Okay. We're
24:18going to invite our guest on for just a minute, but I want to summarize it in one sentence.
24:23I know I'm covering a lot of information. I know I'm covering a lot of information that
24:29may not even go down well with a lot of people. Okay. But that's what research is showing.
24:35It's a change. It's a big change. And that is, you have these risk factors. Some you're
24:40born with, some you acquire. And those risk factors set up inflammation inside the body,
24:48either through latent viruses or through an autoimmune disease. And so various tissues
24:56start getting attacked, start degenerating. So it's really not appropriate to say you've got
25:02fibromyalgia and TMJ. You've really got multi-system inflammatory disease. It's
25:09really not appropriate to say you've got flip discs in my neck and in my lumbar spine, because
25:15you look at that MRI, we find that you've got arachnoiditis, you've got Tarlov cysts,
25:20you've got hypertrophied ligamentum flabum, you've got tethered cord, you've got all kinds
25:26of inflammatory diseases. So, intractable pain is heading down a path to where the two major causes
25:34are inflammatory spinal disease or and multi-system inflammatory disease.
25:43So you're going to hear more about it. Okay. We're going to shift over here now
25:47to introduce our guest. She's a very special person who's dealing with a lot of these issues
25:54herself, but she's also an attorney and a politician. And so she's helping all of us
26:00as long as helping herself. Now, the first thing you have to know about her, don't hold it against
26:06her that she's got one of the most odd names in the city of Chicago. Okay. But she's a lovely
26:15young woman. I'm going to let her tell you about herself. But Kat, can you come on? Are you?
26:22Yeah. Hi, everybody. Okay. All right. Well, let's start for a couple of minutes.
26:29You're an attorney and you're out advocating for us. You're a proud person trying to beat up
26:38the Illinois legislature. It's not a pleasant task, but you've been doing a pretty good job of it.
26:44Where do you want to start? We're going to leave it kind of up to you. You want to tell people,
26:48I'd like to have you at least tell them where were you born, where you grew up,
26:51what took you to law school? Tell us about your own life. I was born in New York,
27:00upstate, not the big part, in Ithaca. My dad was teaching at Cornell at the time.
27:09He's a chemical engineer. I grew up partly in Chicago and partly in Dallas. So I'm a little
27:19bit of a hybrid there. I have EDS and CRPS and adhesive arachnoiditis. And I first started
27:29having symptoms when I was a child. They were in my cervical spine and my shoulder were hurt
27:37really bad, but it was pretty intermittent at the time. When you said you were a child,
27:44how old were you, do you think you recall? I was about eight, between eight and ten. Did
27:50they just say you had growing pains or you were psychological? What did they say your trouble was?
27:56They actually thought that maybe it was the weight of my backpack and I should try switching
28:03shoulders. And since it wasn't constant, it wasn't such a good deal.
28:11So what's your message to mothers and fathers who have an eight-year-old with pain?
28:18Get them screened for EDS. Yeah, screen for EDS. There you go. That's what I wanted to hear.
28:23Well, you'll get your paycheck later. Okay. You grew up with that pain. What happened next to you
28:34personally? When was your next episodes of pain or what happened to you between the ages of eight
28:39and 21? So I was pretty active in that period. But when I got to law school, I was about 21, 22.
28:52And I, at that point, had just relentless pain in my hands. I had a really hard time typing,
29:01writing. I was able to hang in there with compression gloves. They were neon green at
29:11the time, so they were terribly unappealing. And everybody would come up to me and say,
29:17why do you have those green things on your hands? Did you have any more episodes of pain anywhere
29:25between 18, eight and 21? I didn't quite catch that. I did. My spine pain started to get worse
29:34and more consistent. But the marker I can use is that by the time I started law school,
29:42that's when I knew that I had daily pain that, you know, it wasn't really going anywhere.
29:51When were you diagnosed with EDS? I was not diagnosed until 2022.
29:572022. And how did the diagnosis come about? Actually, I had been talking to Dr. Klein
30:05since about 2017. And he was on a Zoom with me. And he said, has anyone ever told you,
30:14you might have Ehlers-Danlos Syndrome? And I said, I'm not even sure what that is.
30:20You know, because it was new to me. And he said, can you put your hands on the ground and,
30:27you know, stand without bending your knees? And I said, oh, yeah, and I can do this thing
30:32where you bend your thumb back. And, and he suggested talking to my doctors and taking the
30:39Biden test for hypermobility. Hypermobility, right. Uh-huh.
30:46Yes. I believe there are nine. Is it nine on the, on the Biden test? Yes. Nine points. Yes.
30:54Right. I think I was a nine. You think you were a nine. Okay.
30:59Yeah. Incidentally, you look like you have Ehlers-Danlos Syndrome.
31:04No. I've been told that. The only people who would know that is a few people like me who,
31:11who study it. And incidentally, that's actually a good thing. Because you're all, you have nice
31:17skin. That's, that's one thing. And also people with Ehlers-Danlos, I don't know how it happens.
31:22You're all really quite nice people. Okay. Very cheery. And sometimes I think you ought to be a
31:28lot more depressed than you are. But anyway, whatever it is, we'll take you as you are. Don't
31:34change that part at any rate. Also, did you have any time before you were age 25, did you have any
31:44bad accidents or infections? I did. I had a really bad car accident, a hit and run. When I was on the
31:53highway, somebody just slammed into me and drove away when I was about 17, between 17 and 19. I
32:00don't remember my exact age, but it would have been right around there. And infections. What
32:05about infections? I had chickenpox. I think I talked to you about that because you mentioned
32:11Epstein-Barr in the context of that. Did you have infectious mononucleosis?
32:18I did have mono, yes, when I was in high school. So that would have been around 16 years old.
32:24Yeah. Let me just stop right here for just a minute. It's, it's an amazing discovery. And I
32:31didn't, I'm not just talking about my discoveries, but I'm putting together a compendium here of a
32:37lot of people's research. No one, two years ago, five years ago, would have thought anything about
32:47your case. Your EDS, nobody, EDS is nothing. You know, you can, you can do somersaults and
32:54be on the cheerleading team. Nobody would have ever thought that that car accident
33:01was going to affect you at age 40. No one would have thought that infectious mono in high school
33:07and your chickenpox was going to affect you as, as we sit here. Okay. Because what we now know,
33:16and I'm going to, we now know what happens. The body carries about 200 parasites. And,
33:25and the big daddy of all of them is the Epstein-Barr virus. And we all get the Epstein-Barr virus,
33:32either when we're a child or when we get mono in teenage years or young adult years.
33:39And so you acquired the virus and young, at very young. And what we don't know is that we,
33:47and like that auto accident, the auto accident will activate a virus. And the virus is very,
33:53very slippery. What it does, it starts causing inflammation very slowly. And that's where that
34:00multi-system inflammatory disease comes in. And people with EDS are thought to have
34:07a depressed immune system. And I cannot identify any auto-antibiotics in EDS people.
34:14What I can identify is that you're kind of sitting ducks for Lyme disease, infectious mono,
34:21or other infections. And that auto accident is affecting you to this day. I make these points.
34:29I hope somebody's out there that hears this or got a child or a student, somebody they're in
34:35contact with, who's got one of these risk factors. And if they've had that auto accident,
34:42they've had a severe infection like mono or like Lyme or pneumonia. They are at increased risk
34:50to developing multi-system inflammatory disease. And later on AA and all the problems that
34:57we're familiar with. Anyway, let me, let me go on here right now. You've made it to age 40,
35:05right? You're 40, you're age 40. Now, up until we had some of these new tools,
35:11people with your condition didn't live much past about age 42. Elvis Presley had what you had. He
35:18made it to age 42, his mother to 48. And if you go back in what literature is available, and there
35:24isn't a lot, but very few people with EDS lived past about age 40. Now you're taking pretty good
35:31care of yourself. You're getting some help. And now you're out trying to help other people. God
35:35love you. So we appreciate that. I'd like to go to two other avenues here. Well, one is what have
35:43you done to stay as healthy as you can, stay functional, keep going? What's been your treatment?
35:53My biggest, my, my secret weapon is research, because I think that knowledge is power. So I've
36:00read a lot about to try to educate myself about my condition. And so that I could also talk to
36:08my doctors about it. When I first met my current pain doctor, he wanted to do a device implant.
36:17And I asked him, you know, how would that work with my EDS? And he said, I'm sorry, I don't
36:25really know what that has to do with anything. And I had to kind of direct the conversation from there.
36:32Okay. And did you have a device implanted? No. No, after I talked to him about about the issues
36:43with potential, you know, organ rupture, you know, suture rupture, herniations, etc. No.
36:52Yeah, I think you were smart. Okay. What else have you done, you know, medically,
36:58therapeutically to stay alive and have a life?
37:04I know this probably sounds like a little bit of a cliche, but I think being positive and active
37:11are really important things, not just physically, but on a on an emotional level, and building
37:18community. So that's part of why I do the activism piece of work that I do. And I also like to try to
37:27pay it forward because so many people have helped me that I want to help people who are maybe in
37:33the same boat or something similar. But I did actually make a list of some things that helped
37:40me if they might help other people as well. Don't hold back. It's what we're here to do now.
37:47Okay, well, it's right here. Now we're talking.
37:56So one of the things that actually are one of our board members, who's our pharmacist,
38:03consultant, Steve Arians recommended that actually helps me quite a lot is to combine
38:08lidocaine with just take like a cotton ball and then put DMSO which will then penetrate the
38:18epidermis. I said that right, Jamie, right? I said epidural earlier. It's not what I meant.
38:32And that actually helps. It gives you more relief over an extended period. I don't recommend it for
38:38really sensitive areas. So it works great for knees, things like that. But maybe not the most
38:46tender spots. I also am a big fan of the stop pain roll on. It's just menthol, but it's really handy.
38:55And it doesn't make a mess. And it's, you know, there's no spill, there's no cream or anything.
39:01All of these things are, you know, you can buy them on Amazon or a Walmart or whatever.
39:08I do also, I, like I said, I think knowledge is power. So I have read your books. I have read
39:17Dr. No wonder you're alive and well. Yeah. Well, there you are. I we follow the arachnoiditis
39:25protocols. We do the methylprednisolone once to twice a week. We do magnesium, we do a multivitamin,
39:35we do calcium citrate, we do B12, we do D3, those types of things. Soaping baths with Epsom salt
39:47and lavender help a lot. Things like compression socks and gloves help because I have dysautonomia.
39:55So that helps a little bit, especially with my feet, which get really cold.
40:00And I also, like I said, I think this book is invaluable. If you have EDS disjointed, which
40:10I got from your, your recent book, but EDS arachnoiditis connection, you referenced it.
40:17I read it and you can see that I devoured it. It's little notes here, but I showed this to
40:24my doctor and he actually started reading it in the middle of our appointment and he wouldn't put
40:28it down, so. Keep trying. The doctors are coming around slow. Okay. Let me switch gears a little
40:37bit. And you have attempted to take Illinois and get some intractable pain legislation passed,
40:46and you've had some good luck up till now. I'd like to hear how you decided to do it,
40:53what your legislation is, and give us a rundown on the success you've had. I think you've made
41:01a difference. Thank you. I hope so. We're trying. So I decided three years ago that
41:11I felt that I should be talking to my elected officials and trying to make a difference for
41:18more people. Once I felt that I was at a more stable place in terms of my medication and pain
41:26management, et cetera, which culminated in House Bill 5373. We had a House Human Services Committee
41:37hearing in March, which I testified at and was asked some questions at and it was passed
41:45unanimously, nine to zero. Then it went to the House floor where it passed again unanimously,
41:52105 to zero. We are awaiting Senate passage, but we have the backing of the Illinois State Medical
41:59Society and their chief lobbyist and vice president will be meeting with our state
42:05Senate president in a couple of weeks, one-on-one, to push this bill through.
42:10Now, what does the bill say fundamentally? You don't have to read it, but can you give
42:15us a general idea of what does it say and what does it do?
42:20One of the core things we decided upon was that there should be no morphine milligram equivalent
42:27guidelines instituted or utilized. So that's one of the pieces that we felt was really important.
42:35Another piece was to require a court order or a court subpoena in order for law enforcement to
42:43access our prescription monitoring program. Here, we call it a PMP. Don't ask me why. I
42:49know everyone else calls it a PDMP, but that's a piece of it. We also just put into writing that
42:57the treatment decisions should be made by the doctor and should be, you know,
43:04basically protecting and respecting the doctor-patient relationship.
43:09So those are some of the things that we did. Those are the core things that are in the bill.
43:15Very good. When does the Senate vote come up, do you know, for hearings?
43:20Well, actually, depending upon what happens in the next couple of weeks,
43:26we may very well have a law. But I will be keeping you posted.
43:31Good. I know you will. Well, thank you so much. I hope we have Mark, my associate here,
43:36Mark Ibsen. Mark, where are you, Mark? Or Rhonda?
43:42I'm right here.
43:43Oh, great. Okay. Legislation's right down your alley, Mark.
43:49Wow. Yeah. I want to acknowledge Kat. Thank you. It's good to meet you in person or as close to
43:56in person as we get. Thank you for all you're doing for us. Dr. Tennant, you asked me to do
44:03some research on the article in Pain News Network from Dr. LeBaron, who's kind of a
44:12whistleblower from the CDC. I've looked at a couple paragraphs of that. I have to tell you,
44:17I've been busy responding to calls from my attorney. And so I'm sort of up to my eyeballs
44:28in medical board actions against me and a new development in my case in Oregon.
44:38And I'd like to speak about that just briefly. So I have a patient in Oregon
44:43who's ultra-rapid metabolizer, Ehlers-Danlos, complicated, constant pain. And about three
44:52months ago, the board of medicine investigator contacted her and freaked her out when he did.
45:02And I have this paternalistic attitude towards some of my patients. It's like, don't mess with
45:07my patients. It's sort of like, don't mess with my children. And I responded to this investigation
45:14by inquiring, are they investigating me? And why would they call my patient when I have the
45:19information that they would want if they wanted it? And they didn't talk to me. And then I sent
45:25them several emails. And then they said, stop sending me emails. Stop sending emails because
45:31we're not investigating you. So that was three months ago. Three days ago, the law enforcement
45:40detective called them and called and left a message at my office. Again, my patient was freaked out
45:49by this interaction. I did not get the message from my office. And then when I did, I asked my
45:54attorney and he said not to call them. So the next step in the escalation was they sent the detective
46:00and a mental health worker to the home. And they let the mental health worker in. It was a welfare
46:09check. I have no idea who instituted this welfare check, but the patient tells me that the board of
46:15medicine instituted a welfare check on the patient. So I have not sorted out what exactly is going on,
46:24but law enforcement is involved and provoked by the board of medicine. And I'm quite upset about
46:30it. I can't really think about anything else. So sorry I haven't done my homework. The dog ate my
46:36homework. But what concerns me about this is it's one thing to have a board of medicine action. It's
46:43another thing to have law enforcement involved. And when law enforcement's involved, things are
46:46going down a completely different pathway. So say a prayer, please. That's all I got.
46:52And Ken, I can't respond to this. And Mark, you know what you're doing fundamentally? You've got
46:57some states that don't want to treat these people, but then they don't want anybody outside the state
47:05to help them either. In other words, what I'm hearing is you've got this state of Oregon
47:11saying we don't want this person to get any help or welfare and just assume they die. I mean,
47:17what other message are we supposed to get out of this? I can't think of another one
47:23other than some sort of hostage situation. But in doing some research about this case,
47:32I came across the CDC opioid rapid response team that they allege exists. And
47:43I was looking up for a couple of patients who wanted to know if there's anything else anybody
47:48could do. And the CDC opioid rapid response team has an email, no phone number, and they've never
47:55treated a single patient. So I'm the CDC opioid response team right now. And I intend to use this
48:06as a defense that given that the CDC has an opioid rapid response team and no one implementing it,
48:15I consider that to be my cause that, okay, you're not doing it, I'm doing it. And hopefully that'll
48:26be a defense for me. I don't know. More will be revealed. I'll keep you guys all posted
48:31about this. But this seems like a fairly aggressive turn. And I think I've pissed some
48:43people off, which I knew I was doing when I reentered the opioid treatment field. And
48:51so now it seems to be like a little bit of momentum going in from Maine and from Oregon.
48:56So I'm bicoastal now. Well, I salute you. And I'm so happy you're trying to help
49:05until maybe we can figure a way out of that. Rhonda, I see you're back on the air.
49:10Rhonda, do you have anything you'd like to ask Cat or Dr. Ibsen or comments you'd like to make?
49:16Well, both of you are just, Dr. Ibsen, of course, we're going to pray for you. Keep that situation,
49:27that's scary. Definitely keep you in my prayers. Cat, wow. I just got to say thank you, man. This
49:37is really good. I always have trouble saying that word. It's a really good bill that you're
49:47working on with no MME required court order for law to access pain scripts. And then that
49:59the treatment decision should be by the doctor. I mean, I don't know how we've got so far off
50:04track here, but here we are. And here's you, like, you know, you're in there doing something
50:09about it. And I just want to tell you, thank you on behalf of all of us. Every single one of us
50:14appreciate you. Thank you. I couldn't do it without this community. And I did send you a message,
50:25Dr. Ibsen, to reach out to me if I can help you in any way. That's good.
50:31You ask a good question. How did we get in this mess? You know, I look back and there was a time
50:39when law enforcement got me into this business. There was a time when the Department of Justice
50:46knew the difference between an addict and a pain patient. They wanted both helped.
50:51It was a different world. And then something's changed out there. I mean, I'm old enough to
50:56I mean, I'm old enough to have come up out of the times in which we not only thought people was
51:01it was a right to get pain treatment. It was the best thing for the health system. We keep people
51:06out of the hospital. We could keep them off down. We put their families together. In other words,
51:12everybody won. And then something went terribly wrong. I don't quite know what it was or when it
51:21occurred. But remember, we had the fifth vital sign, scales of one to 10. And it's like the
51:26curtain came down at some point. And I truly don't know what happened in a country or who was behind
51:34it. I think it's just important to know that there was a time we would not have this discussion.
51:41Okay. And when good people wanted other people taken care of. So I know it's possible. Okay.
51:49And I don't want to hear that, that opioids and these medicines cost a lot of money.
51:55Do you realize what it costs to put a stimulator in somebody today?
52:01$75,000.
52:02No, that's half. It's now 150. Half was just for the device. The other half is for the hospital.
52:09Mark, you're gonna have to, you're a great doctor, but you're poor on economics.
52:15No shit.
52:18Well, we've had a great session. Thank you, Kat. Thank Rhonda. Dr. Ibsen, hang in there.
52:24As you know, you're with us, and we're going to generate a lot of prayers. And if there's
52:28anything else anybody can think to do, please do. It is important to look at this new book
52:32that's out. There is a whistleblower who was inside CDC when they drafted the guidelines.
52:38And Kat, I would think every legislator in Illinois ought to have a copy of that.
52:42It really points out that the CDC guidelines, which has made all this worse,
52:47problems came about before the guidelines. But that shows you the, I believe his title or
52:54subtitle, it was Greed to Good Went Out the Window or something like that. At any rate,
53:00we'll sign off until next week. Thanks, everybody. And let's carry on. We'll see you next week.
53:06Thank you, Dr. Tannenbaum. Thank you, Dr. Ibsen. Thank you, Kat. Thank you, Dr. Ibsen. Rhonda.
53:13Donna and everyone who showed up. We appreciate all of you. You are not alone. We'll see you
53:19again next week. Please do, those of you who pray, please keep us all in your prayers,
53:25especially Dr. Ibsen and his situation. And those that will, if we'll go to God in prayer before we
53:34go, in the name of Jesus, Lord, we ask you, Father God, to just open up the windows of heaven and
53:40pour out blessings that he cannot contain in good measure, pressed down, shaken together and
53:45running over. Lord, when hell comes against us like a flood, you raise up a standard against it.
53:50And we know that no weapon that's formed against us shall prosper. We know that every tongue that
53:55rises against us in judgment will be condemned for this is the heritage of the servants of the
54:00Lord. And we know that you are the head and not the tail. Thank you, Lord, that you are the vine
54:07and we are the branches. Thank you that you make sure that your children are taken care of. You
54:14constantly look over us and protect us. We ask for special blessings over Dr. Ibsen,
54:20that you continually protect him and make all things turn for the good. Thank you, Lord. Amen.
54:29Amen. Amen. Amen. Now that's a prayer.
54:38Thank you, Jamie. Thank you, Jamie. Thank you, everybody.
54:46Love you. God bless you. Thank you so much, Dr. Pena and Dr. Ibsen. Jamie, thank you.
54:56Thank you all. Thank you. You're not alone. We'll see you next week. You're not either.
55:06Good night. Good night.