• 3 months ago
Transcript
00:00:00Good evening, everyone, and thank you for joining us for Episode 7 of Season 4 of DocTalks with Dr. Flores Tennant and friends.
00:00:09We have a special guest tonight, Donna Wilkes. We're so happy to have her with us.
00:00:14We're glad all of you could join us tonight. Dr. Tennant, I'm going to go ahead and sorry.
00:00:19Dr. Tennant, I'll go ahead and turn it over to you.
00:00:22Thank you so much. Thank you. I'm delighted to be here.
00:00:26Last week, we had some technical difficulties, and I think we've got them worked out thanks to my good wife, Miriam,
00:00:33who has figured out the technology of how in the world we're supposed to do these meetings now.
00:00:39Anyway, I'm delighted to be here because I want to address a subject that's really applicable almost to every pain patient,
00:00:49or at least every pain patient who's got to take medications and deal with their problem on a daily basis.
00:00:57And I know that everyone who's listening to this has heard something about the glial cells.
00:01:04I've mentioned it before on two or three occasions.
00:01:08But tonight, I put together a presentation to try to give you a background of what this means
00:01:16and what you're to do about it.
00:01:19And to get us started, I want to relate something that happened from two patients this week.
00:01:29Number one had a gentleman this week who has an inherited collagen disorder.
00:01:39He's got arachnoiditis. He's had all kinds of problems for many, many years.
00:01:45And in the last two or three years, he's had an intrathecal pump put in.
00:01:51And the pump got up to where it's really tried pre-alt, and he got to where he was taking, even in the pump,
00:01:58maximal doses of fentanyl and dilaudid together, and with some clonidine once in a while.
00:02:04Well, the reason he's contacted me is that the pump has quit working.
00:02:09Now, it's not the pump. The pump's fine.
00:02:12But the opioids don't work anymore.
00:02:14Now, he is one of many people that I'm hearing from who wake up one day,
00:02:21and their high dosages of opioids, including fentanyl and dilaudid, oxycodone, hydrocodone, don't work anymore.
00:02:30Okay?
00:02:31Now, what I want to talk about tonight is this used to be a mystery.
00:02:36Why do opioids in some people quit working?
00:02:41The answer lies in the glial cells.
00:02:44Okay?
00:02:45Now, a second person talked to me this week and called me.
00:02:49And, in fact, he's in New Jersey.
00:02:52Anyway, he said, Dr. Tennant, I started on your protocol about a year ago for my adhesive arachnoiditis.
00:03:00And he says, I was just doing just great.
00:03:02When I started the Ketorolac and the methylprednisolone, they immediately started relieving my pain.
00:03:08I was almost pain-free within a week or two, and I've been doing great for this past year.
00:03:13So I decided to stop my methylprednisolone and my Ketorolac.
00:03:20And so I stopped them, but nothing changed.
00:03:23I was still just fine.
00:03:25And I said, well, that's good news.
00:03:28That's good news.
00:03:30But if he'd have asked me that a couple or three years ago, I'd have been mystified.
00:03:34But now I know the answer to his good situation.
00:03:39And that is, it all lies in the glial cell.
00:03:42In other words, one tragedy, his opioids don't work.
00:03:46And can he even find pain relief for the rest of his life?
00:03:49Real question.
00:03:51And then, secondly, we've had somebody who's done very well with the standard adhesive arachnoiditis drugs,
00:03:58the methylprednisolone and the Ketorolac.
00:04:01And he has stopped them, and he still feels just as good as he did before.
00:04:04So what should he do?
00:04:06Well, the answers to these things lie in the glial cells.
00:04:10Now, let's talk a little bit about the history of the glial cells.
00:04:15Now, first off, the glial cells are a cell that's in your brain and your spinal cord as well as in the caudal equina.
00:04:27So it's in the central nervous system.
00:04:29These cells are throughout the brain, spinal cord, caudal equina.
00:04:35Why is it called glia?
00:04:37That word comes from Greek.
00:04:39That means glue.
00:04:41So glia in Greek means glue.
00:04:44The original belief for centuries was that the glial cell was the glue that held the brain and the spinal cord together.
00:04:56Under the microscope, you can see these cells, and they seem to be—they're branched.
00:05:03They've got a lot of branches on them, or tentacles, you might want to call them that.
00:05:07And that these cells seem to hold together the brain and the spinal cord.
00:05:13And some were a little varied in size or content, and so they ended up with various names like astrocytes and oligodendrocytes and microglia.
00:05:24And you don't need to know any of that.
00:05:26Just know the word glial cells, because if you have pain, you take medications for pain, you need to know about the glial cells.
00:05:36So we've got—just started out here right now with some things, and now we're going to go into it a little further.
00:05:43Well, a few years ago, they found out—some really bright researchers found out that the glial cell was more than glue.
00:05:55What they found out was that the glial cell is the equivalent of the lymphocyte in the bloodstream.
00:06:03Okay?
00:06:04And this gave us a concept that is critical for everybody listening this to understand.
00:06:12You have two basic immune systems in the body.
00:06:18One outside the nervous system, mainly in the blood and in the spleen and the lymph nodes and the thymus glands.
00:06:25But then you have a second separate immune system in the central nervous system, and it's based on the glial cell.
00:06:37If you have pain, you have serious disease, you have to target both systems.
00:06:44You got that?
00:06:47You have to understand, and so do your practitioners, that you've got two immune systems that you've got to work with.
00:06:55Now, these two immune systems both have a basic function.
00:07:01Now, the basic function of the lymphocyte in the bloodstream and the glial cell in the central nervous system is—
00:07:12Well, the glial cell does help hold the place together, but it has the function of protecting you.
00:07:19Now, anything that gets in the central nervous system, a virus, a bacteria, a toxin, a poison, too much electromagnetic energy,
00:07:32the glial cells is going to capture it, wrap its tentacles around it, secrete its chemicals.
00:07:40It's going to neutralize it.
00:07:41It's going to kill that bacteria, or it's going to neutralize that chemical or that energy.
00:07:46It's your protector.
00:07:48Now, just like the lymphocyte, it does a lot of this protection by creating inflammation.
00:07:55Now, inflammation is the same whether it's in the central nervous system or outside the nervous system.
00:08:00We like to use the term neuroinflammation these days just to imply that it's in the central nervous system.
00:08:06But all of you know what inflammation is, but let's make sure we do know what inflammation is.
00:08:11Inflammation is when tissue gets hot, and it gets vibrant, and it can grab you and kill organisms.
00:08:21But guess what?
00:08:22A little inflammation is a good thing.
00:08:25Too much destroys your own tissues.
00:08:29Okay.
00:08:30Now, let's get this real straight.
00:08:33A little inflammation is what you want.
00:08:36It protects you.
00:08:38Too much inflammation, the inflammation turns on you and starts destroying your own tissues.
00:08:47Okay.
00:08:49Now, here's the situation.
00:08:53These glial cells in the central nervous system will produce too much inflammation
00:09:01if the thing that caused the glial cell to activate in the first place doesn't stop.
00:09:09Okay.
00:09:10In other words, the glial cell and the lymphocytes are there waiting to be activated,
00:09:17and that's the term you'll see in writings.
00:09:20You'll see in medical writings or even lay writings now the terms glial cell stimulation or glial cell activation.
00:09:29What that means is the glial cell is producing inflammation.
00:09:34A little bit is a good thing.
00:09:36Too much is a bad thing.
00:09:37Now, why would the glial cell produce too much inflammation?
00:09:43Well, number one, if you've got an injury or a wound that just doesn't go away,
00:09:49it just keeps feeding the glial cell to stay active.
00:09:52It doesn't shut off.
00:09:53It just keeps producing too much inflammation.
00:09:57Now, the second thing that causes it, you folks that have an autoimmune disease may have that autoimmunity
00:10:08through what's called autoantibodies continue to activate the glial cell.
00:10:15And they're not certain about this whether EDS falls in that category or not,
00:10:19but we certainly know that diseases like systemic lupus,
00:10:24rheumatoid arthritis, psoriasis, ankylosing spondylitis, Sjogren's syndromes,
00:10:29all of those diseases are autoimmune.
00:10:33And each one of those can continuously stimulate the glial cells to overactivate.
00:10:40But the big one we think today is what we call viral reactivation.
00:10:47Now, you're going to hear a lot about this in the next few weeks.
00:10:50I've been doing this research almost daily since a big report came out in 2018
00:10:56as to what the Epstein-Barr virus can do with the human body.
00:11:01And at any rate, you're going to hear the term viral reactivation.
00:11:06The one that does the worst job is the Epstein-Barr cytomegalovirus.
00:11:13It's right in there, mycoplasma.
00:11:15Now, maybe COVID, but COVID seems to have a little different.
00:11:18We're not quite sure what it does.
00:11:20At any rate, the Epstein-Barr reactivation clearly activates the glial cells big time.
00:11:30And we think that today a high percentage, maybe almost everyone,
00:11:36who develops constant intractable pain may have Epstein-Barr activation,
00:11:43I mean glial cell activation.
00:11:45At least those people who have adhesive arachnoiditis and severe intractable pain diseases,
00:11:51particularly arachnoiditis, have Epstein-Barr reactivation.
00:11:55And you'll have to hear more about that.
00:11:57But three things, if you've got an injury or a disease like a wound that just won't heal,
00:12:03that's going to continually activate the glial cells.
00:12:06If you have an autoimmune disease, you're in danger of overactivating the glial cells at all times.
00:12:14And thirdly, if you have developed Epstein-Barr reactivation, that will cause excess inflammation.
00:12:22Now, let me get to the bad news.
00:12:24Okay, get to the bad news.
00:12:27I think I've talked to you before, and I'm going to talk a lot about it again.
00:12:32Pain control inside the central nervous system is based on what we call systems of neurotransmitters and receptors.
00:12:46Okay?
00:12:48Neurotransmitters and receptors.
00:12:51And there are about seven different ones that have been identified.
00:12:56You may see it there, and I'm going to get more to it.
00:13:00I'm going to digress for just a couple of minutes.
00:13:03I'm going to read you these seven receptors.
00:13:06Okay?
00:13:07Because everybody, particularly those of you who have got constant pain, intractable pain, you've got to know about these seven.
00:13:14Because you've got to, in order to get relief, you're going to have to trigger at least two a day or three or four to get relief.
00:13:23You can't just trigger one.
00:13:25Now, the main one is the one that everybody focuses on, and that is the endorphin receptors, because opioid is the most potent.
00:13:33Okay?
00:13:34But the second most potent is one called GABA, gamma-aminobutyric acid.
00:13:38And that's the one that gets triggered by Lyrica and gabapentin and Valium and Xanax and Soma.
00:13:45And then you've got your dopamine receptor.
00:13:47That's probably third in line.
00:13:49That's triggered by any number of your stimulant drugs.
00:13:52You've got cannabinoid receptors.
00:13:54You've got serotonin receptors.
00:13:56You've got one called N-methyl-D-aspartate.
00:13:59You've got one called adrenergic.
00:14:01So you've got seven of these receptors.
00:14:04Okay?
00:14:06Now, when you get too much glial cell activation, the poor gentleman who has a pump in and even fentanyl and diluted combined gives him no pain relief.
00:14:23What's happened?
00:14:25The excess glial cell inflammation has knocked out his endorphin receptors.
00:14:30Okay?
00:14:31Doesn't have any of them left.
00:14:34What's he going to do for pain relief?
00:14:36I don't know for sure.
00:14:38He's got to try to trigger enough of the other receptors.
00:14:42But then I ask you another question.
00:14:45Have you ever taken any of the supplements or drugs to suppress glial cell activation?
00:14:50He's never heard of it, he said.
00:14:52Never heard of it.
00:14:53Has your doctors ever brought it up to you?
00:14:56My doctors?
00:14:57Are you kidding?
00:14:58I mean, that was his response, not mine.
00:15:01But anyway, he said, I don't even know what you're talking about.
00:15:05I said, well, you need to know about glial cell activation.
00:15:09Because that's what's happened to you.
00:15:12You didn't get tolerant to the medicines.
00:15:14You wiped out your triggering points.
00:15:17You wiped out your mechanisms.
00:15:20Because you haven't done anything for years about neuroinflammation and glial cell suppression.
00:15:28Okay?
00:15:29Now, the other fellow, who did real well, and he got really relief with his methylprednisolone and his Ketorolac.
00:15:39What he did, he put the glial cell in remission.
00:15:45He calmed it down.
00:15:47He got that cell to go back to its normal state, where he doesn't have excess inflammation.
00:15:54So what does he need to do?
00:15:56Well, he doesn't need to take as much Ketorolac or methylprednisolone.
00:15:59Maybe he doesn't need to take them at all.
00:16:01But he has to protect himself and keep those glial cells under control and contained for the rest of his life.
00:16:08So it's easy for him, because I'm going to tell you in a few minutes what you do about all this.
00:16:13It's real simple.
00:16:14So anyway, I was able to tell both of these gentlemen what they need to do.
00:16:20Okay?
00:16:22Now, because the neuroinflammation caused by the glial cell in research circles is really causing a lot of action, and rightfully so.
00:16:34And there's some research going on out there that I want to bring to your attention.
00:16:39The ones that we're interested in here is the development of constant intractable pain.
00:16:45But there's a couple of other areas that I do want to mention to you.
00:16:48It does look like that excess glial cell inflammation causes a lot of the Parkinson's cases.
00:16:54And for those of you who are developing tremors or something, you may be knocking out some of your dopamine receptors because of excess glial cell inflammation.
00:17:04And I hate to bring it up, but dementia.
00:17:07Okay?
00:17:09You've got to protect yourself from developing dementia.
00:17:13Losing your memory.
00:17:14Can't read.
00:17:15Can't think.
00:17:17Can't rationalize because neuroinflammation will strike those neurons also.
00:17:25Now, I've been looking at brain scans of people with severe intractable pain.
00:17:30And what I find is that this neuroinflammation isn't in any one spot.
00:17:35In fact, I've got a lot of x-rays that shows these white knockout spots, and they're just spread all over the brain in no one certain place.
00:17:43So, you can't say that it's going to knock out your serotonin receptor or give you Parkinson's disease or your endorphin receptors.
00:17:51It's kind of the luck of the draw.
00:17:53Viruses don't decide that they like a serotonin receptor better than a dopamine receptor.
00:17:59They just kind of hop in there.
00:18:02Okay?
00:18:03And they decide whatever glial cell happens to be handy.
00:18:08And to make matters worse, when we talk about Epstein-Barr reactivation, I'll be coming back to you with that.
00:18:14The virus itself may inhabit the brain and in the glial cells.
00:18:19They actually can live inside the glial cells.
00:18:21So, this is all things that are coming down the pike, but things we can do about.
00:18:26Now, let me give you the good news.
00:18:29Because of the necessity to calm down the glial cells, there has been a plethora, just a whole bunch of piles of research to figure out what medicinals will calm down the glial cell.
00:18:44Now, and every one of these, and every person out here watching this can easily obtain some of the medicinals that calm down the glial cell.
00:18:55Okay?
00:18:56Now, and there's, I've got all, I've been collecting references on this and trying to stay right up on every laboratory who's doing anything with glial cells.
00:19:05And I am pleased to tell you that I'm going to show you a list.
00:19:08Everybody here, get out your pad and pencil.
00:19:10Okay?
00:19:11Because you need to know, I'm going to give you two lists.
00:19:15One list are the medicinals that you can buy without a prescription.
00:19:20You can buy them at the health food store.
00:19:22You can buy them over the internet.
00:19:25And some can fit your pocketbook better than others.
00:19:28And I don't know which one is the best.
00:19:31All I know is that in laboratory studies, not in human studies, but in the laboratory, here are six.
00:19:41Hope you can see these now.
00:19:43I'll read them to you.
00:19:45Six herbal natural products that suppress the glial cell and neuroinflammation.
00:19:51Okay?
00:19:52I'm going to read these off now.
00:19:54I don't know if you can see these or not.
00:19:56Put that back up, please.
00:19:58Okay.
00:19:59First one, resveratrol.
00:20:01Okay?
00:20:02Second one, curcumin.
00:20:05Third one, luteolin, pycnogenol, boswellia, and kratom.
00:20:14Now, what's nice about some of these, a lot of these have crossover things.
00:20:19Okay?
00:20:21So those are your, at least coming out of laboratory studies, are herbal natural products available to anybody.
00:20:30And they have been shown at least in laboratories to suppress glial cell inflammation.
00:20:36Now, I have here six prescription medications that suppress the glial cells.
00:20:49And these are the most potent, and I'm going to put right up here number one and two, methylprednisolone and dexamethasone.
00:20:58Okay?
00:20:59Now, these are cortical steroids, and these are the only two cortical steroids.
00:21:07Prednisone is not in that class.
00:21:09Hydrocortisone is not in that class.
00:21:12Triamcinolone is not in this class.
00:21:15But these two cross the blood-brain barrier and suppress glial cell activation and neuroinflammation.
00:21:25And unless you're like the good lucky gentleman who used it for a while, these are the most potent glial cell inhibitors we have, these two cortical steroids.
00:21:37And that's why I highly recommend anybody who's starting on a protocol needs to be on either methylprednisolone or dexamethasone on one to three days a week.
00:21:48These are the big guns. Okay?
00:21:50Those are the big guns.
00:21:52Now, low-dose naltrexone, it's not as potent as cortical steroids, but it does have some glial cell suppression.
00:22:00Minocycline, that's a nice cheap antibiotic, 100, 200 milligrams a day is cheap.
00:22:06Most doctors won't hesitate to prescribe it.
00:22:09Metformin.
00:22:11Metformin.
00:22:12Now, if you're diabetic or you're prone to diabetes, taking a metformin at bedtime, studies show that it helps suppress glial inflammation.
00:22:22And lastly, Ketorolac, that's the one labeled drug as an anti-inflammatory that works on the glial cell.
00:22:32It crosses the blood-brain barrier, has a lot of pain relief, and it will suppress glial cells.
00:22:38But again, you can't take it every day.
00:22:40It's a drug you can only take once or twice a week or three times at the most.
00:22:44But these are the prescription agents to suppress the glial cells.
00:22:50In my opinion, if you are someone out here who has constant daily pain, you've got to take opioids every day, and that pain just doesn't go away,
00:23:03you need to be on, in my opinion, maybe one or two non-prescription herbal drugs and at least some prescription potent compound to suppress the glial cells.
00:23:16Now, this is in addition to your opioids or to your Xanax or to your Ritalin.
00:23:22This is not a substitute for your pain relief.
00:23:25Pain relief is symptomatic.
00:23:27You've got to have that to function the thing and what have you.
00:23:30But you've got to also keep that glial cell inflammation down so your opioids and your other drugs keep working.
00:23:39Okay?
00:23:40Now, I hear this all the time.
00:23:42Well, if I don't get pain relief within two hours, I don't want to take it.
00:23:46That's foolish thinking.
00:23:48You've got to be having a preventive program as well as a symptomatic here and now program.
00:23:54You've got to be able to do both.
00:23:57So anyway, that's the lesson today, and I think it's a critical one.
00:24:05And certainly, I'm not quite sure to tell you where to go from here, except don't forget glial cell activation.
00:24:13Find out as much as you can about it.
00:24:15And just remember, do something.
00:24:18Do take some of those herbal natural compounds or some of those medicinals in addition to your regular pain programs.
00:24:25Okay, with that, we've got a very interesting person to interview here today.
00:24:30Donna, I see you're here.
00:24:33Yes, doctor.
00:24:35Now, Donna has been on board following us and been an advocate for a long time.
00:24:42And you see there, she's breathing a little extra oxygen, it looks like.
00:24:50And we're anxious to hear how you got here.
00:24:54And anyway, Donna, I'm going to tattle on you a little bit.
00:24:59You've got a good attitude for all that's happened to you.
00:25:03Okay.
00:25:06She gives her opinion, and they've been good, and our communications have been just terrific.
00:25:12Anyway, Donna, let's start with the beginning.
00:25:14Where are you from originally?
00:25:16Washington, D.C.
00:25:18I was born and raised here and pretty much lived most of my life here.
00:25:22Yeah, yeah.
00:25:23Now, you don't consider yourself one of these politicians that we hate all the time, right?
00:25:29I never liked politics.
00:25:31Yeah.
00:25:32Well, you've got a lot of company.
00:25:34Okay.
00:25:35You're born in Washington, D.C.
00:25:37Now, you go ahead and tell me about your schooling and your education.
00:25:43My name is Donna Wilkes.
00:25:46And like I said, I was born in D.C., raised pretty much most of my life, went to Catholic schools in the city.
00:25:55And for college, I got a scholarship because I was always interested from the time I was in fourth grade in science and taking extra credit courses and entering competitive science things for students in high school.
00:26:12And I got a scholarship and entered Georgetown University early decision as a chemistry major.
00:26:19And by the time I was in my sophomore year, my second year, I was commuting and I was living at home and I went to answer the phone and something I had done a million times.
00:26:31And I sat down on the step, leaned back and heard this and felt this terrific pain.
00:26:37And even my dad, who is two rooms over, asked what that sound was because it sounded like a tree branch, just like a thunderbolt or lightning bolt rather had a tree branch.
00:26:49That's how loud the sound was.
00:26:51And when I went to stand up, I almost fell over.
00:26:55And I thank God he was home anyway.
00:26:58The upshot is, you know, I found out I had a fracture of my sacrum and it's believed by some doctors that perhaps that was the beginning of what became an ultimately arachnoiditis.
00:27:13I was diagnosed a few months, many months later, within a year with cauda equina syndrome.
00:27:20And in about a year after that, so it slowed down my education and it was just trying to carry the books.
00:27:29I ended up having to get to another parking lot because I had to stop it.
00:27:36I'd have to sit. I couldn't walk very far.
00:27:38And my tests had to be proctored after a few years because I couldn't sit very long.
00:27:44And, you know, I was always having to, as you would say, I noticed that was one of the hallmarks.
00:27:51And at the time, I didn't even know.
00:27:53No one told me really anything about arachnoiditis.
00:27:56They just told me I had it.
00:27:59There was no Internet then, but I looked it up and, you know, but it didn't say how it was treated.
00:28:07Donna, I'd like to, if I can, I'd like to go back and see if you can help us out a little bit on exactly how this started with you.
00:28:22Because I do think that maybe your story may help a little bit in helping me and other people understand how these things get started.
00:28:31But first off, how old were you when this happened?
00:28:34I was 19. I was 19 when I sat down and fractured my spine.
00:28:39I now know, I didn't know then, that my spinal bones were not normal.
00:28:44Apparently, I didn't know until years later that my parents were told that when my mom was hemorrhaging with me at three months,
00:28:54that I was not going to survive because I was stuck to the tumor that was causing her to hemorrhage.
00:29:00And the doctors had told my parents to be prepared to lose me.
00:29:03So the thing was back in, you know, I'm 70 now.
00:29:07And so in the early 50s, you didn't have anything other than x-ray to tell whether you were alive or not.
00:29:14And the fact that I was still there on an x-ray two weeks later told them that.
00:29:19Now, you were 19.
00:29:23I assume that you and your doctors were quite surprised to have this at such a young age.
00:29:30Well, yes. And also one of the problems was I really didn't have a family doctor.
00:29:36My pediatrician kind of let me go when I was like 16 or 17.
00:29:41So I really didn't have, I had to go to the Student Health Service.
00:29:44So I really didn't have people who knew me, you know, and that was part of the problem.
00:29:50There really was no one to coordinate my care either for a long time.
00:29:56Did they give you a diagnosis saying you were inherited with any kind of collagen disease or metabolic disease of any kind?
00:30:07Well, I've never been diagnosed with a collagen disease.
00:30:10I do have thoracolumbar scoliosis.
00:30:14And, you know, I've had a history of my first surgery, even after I was diagnosed with the arachnoiditis,
00:30:23was a decompression laminectomy at 20 for spinal stenosis.
00:30:32Before you had your back trouble, did you have any other medical problems at all when you were a teenager?
00:30:39Or were you a sick child at all?
00:30:43Well, I had, in those days, I think almost everybody, because there were no vaccines, got measles, mumps, chicken pox.
00:30:50The only unusual thing I got that probably, well, is scarlet fever.
00:30:55I got that when I was eight years old, apparently from swimming in, you know, the ocean, but, you know, beach or something.
00:31:04I don't remember, but I remember being really sick, you know, but that's about all.
00:31:10I think I've pretty much had the typical childhood diseases that people in their 50s and early 60s would have.
00:31:18Did you recover from the scarlet fever okay?
00:31:22As far as I know, yes.
00:31:24They gave you penicillin and you got...
00:31:27I think so, yeah.
00:31:29I mean, I just know I was sick for a while, but I didn't have a recurrence of anything, fortunately.
00:31:35Were you able to pick yourself up and resume life after that?
00:31:38Yes.
00:31:42When you had your back, that sudden pain, when you stood up, how long did that last?
00:31:47Did that go away after a while?
00:31:49It went away.
00:31:51It kind of lasted, felt like minutes, okay, but eventually it kind of died down.
00:31:58I mean, but it never really went away.
00:32:01You know, it was like from that moment on, it seemed like it was always some level of pain and not like it is now, but it just never completely went away.
00:32:14Okay.
00:32:15Okay.
00:32:16Now, you made it to age 70.
00:32:19Yes, thank you, God.
00:32:22You started down this journey of unfortunate health at age 19.
00:32:29You're now 70, and you look to me like you're going to go on for a while.
00:32:35Oh, my goodness.
00:32:37We're not going to get rid of you this weekend, all right?
00:32:40Okay.
00:32:41All right.
00:32:42Dr. Ibsen, are you following this thing here?
00:32:45Yes, I am, sir.
00:32:48Yeah, Dr. Ibsen has a prayer for people like you on the spot, okay?
00:32:57Fill us in a little bit more.
00:33:00Based on starting off at age 19 with such a dramatic problem, making it to 70 does strike me as unusual.
00:33:11Can you fill us in a little more?
00:33:13What happened in the interim to you?
00:33:16Well, a lot.
00:33:17I mean, it was academic things, and then eventually becoming an advocate for disability rights, you know, being involved with, like, our mayor's committee, trying to get houses of worship to be accessible.
00:33:34My faith has always been important to me.
00:33:38When I was 14, and I thank God this was all before I, you know, fractured my spine, I learned that I could become, after my parents would take us to the Franciscan monastery here in DC, it was a replica of what is in the Holy Land.
00:33:55And I really fell in love with St. Francis of Assisi.
00:33:58Actually, the symbol behind me is a symbol of the Franciscan secular order.
00:34:04And I found out then you could join at age 14.
00:34:07It was three years, four years of study, novitiate, all of that.
00:34:12And then I made my profession when I was 18.
00:34:15So it's helped me so much.
00:34:20Now, did you go on and then get some degrees and do some either?
00:34:24Yes, I eventually got my bachelor's degree with honors.
00:34:30And, well, in biology, I just switched.
00:34:34And I was in a pre-med track, too.
00:34:36I planned to be a physician from the time I was in fifth grade.
00:34:41But I knew it took me extra time because once I had the fracture, I tried.
00:34:48But almost every time I would go to classes full time, I'd end up getting, you know, kind of getting worse.
00:34:55And so the doctors eventually told me, don't go full time.
00:34:59So it took me longer to get my degree.
00:35:02But then I also realized that sitting on lab benches and all of that wasn't it was really difficult, very difficult.
00:35:10So I knew I couldn't stay in the field of science.
00:35:14But I found out by taking a graduate course in the philosophy of science when I was an undergrad that there was a field called the history of science.
00:35:24And I was like fascinated by it.
00:35:27I mean, studying people like Galileo or Darwin, just to kind of like the highlights.
00:35:32So I thought, well, I wanted to continue my education.
00:35:37And I thought, well, this at least would be a more sedentary thing.
00:35:41Maybe I could do it.
00:35:42I was still, you know, trying to cope with doctor's visits in and out of a hospital with more surgeries.
00:35:49Carrington rod fusion and from T8 to the sacrum.
00:35:53And then the rods, because of the softness of my spinal bones, broke loose.
00:35:58And then I had to go back.
00:36:00And it's just one thing after another.
00:36:03I had been diagnosed with CRPS in the 80s when it was reflex sympathetic dystrophy.
00:36:10And that kind of overshadowed my diagnosis of the arachnoiditis.
00:36:15And it didn't get the attention because, again, I think they knew so little about it then.
00:36:21And so it didn't kind of felt at their wayside.
00:36:25But it was always on my record.
00:36:27OK, as having it, he's by the 90s.
00:36:31Because I had MRIs pretty much every five to eight years.
00:36:36And they monitored the progression, you know, and it was adhesive by the time I was in my 1990s.
00:36:45And I did get my by the way, I did get my master's degree in the history of science.
00:36:51It took a while because, again, that was when I had the fusion and the rods removal.
00:36:57And it just I mean, I just I love school.
00:37:00I know I pushed a lot of times to go back because it was a course I really wanted to take.
00:37:06And it was only offered every three years or something.
00:37:09And I knew I couldn't make it with the New England weather and all of that for another three years.
00:37:15So sometimes I know I pushed myself too much.
00:37:19But, you know, eventually you kind of learn you got to live within certain limits.
00:37:24I mean, and I still push a little, but that's kind of me.
00:37:28You know, you still have your rods in now.
00:37:32No, they had to be removed because they slipped out of place and began scraping my spine so long.
00:37:38They found increased bone density around that area where the lower part of my sacrum.
00:37:44So, yeah, it was painful.
00:37:46But the doctors in D.C. when I came back on a break, they didn't want to touch it because they say,
00:37:52well, the doctor said Brigham did it.
00:37:54So go back there.
00:37:56So I had to wait until I could go back to school to be able to get that taken care of.
00:38:02And it was difficult.
00:38:05So tell us something about yourself now.
00:38:08Now, do you live alone or are you in an assisted living situation?
00:38:12What is your life?
00:38:14Ever since 1993, which was when I was no longer able to transfer, I couldn't bear weight anymore.
00:38:21I mean, it was a gradual thing with the walking over the 80s and all of that.
00:38:26It just and then actually I'm living right now in a nursing home.
00:38:32And I've been in a skilled nursing facility since 1993, continuously.
00:38:38My first facility closed in 2016.
00:38:43And so I'm now living in another one here in D.C., which started out being a lot better than it is now.
00:38:52We're very poorly staffed. And that's one of the problems.
00:38:55I think the people are really trying.
00:38:58But it's upper management's decisions that anyway, you know, say something.
00:39:06I lost my train of thought, which is typical.
00:39:10Something about, oh, I had surgical sympathectomies, anterior and posterior approach for my upper extremities.
00:39:18Because and I think, well, when I had CRPS, I could not use my left hand at all for 13 years.
00:39:26I had no use and it was excruciating pain, you know.
00:39:30And so they had tried nerve blocks, the, you know, the kind of special ganglion blocks and all kinds of stuff.
00:39:39I mean, I had those infusions, not ketamine, not at that point, but lidocaine.
00:39:46I almost died from that one.
00:39:49They let it go on too long after I said I had a metallic taste in my mouth.
00:39:54Next thing I know, I'm passing out and I got an ambu bag over me.
00:39:58You know, it's like, that's why I say it's, I thank God to be alive because I've been close to death so many times.
00:40:07But the Lord always had somebody there to help me, you know.
00:40:12Mark, I see you here.
00:40:16Go ahead.
00:40:18What questions do you have for her?
00:40:21You have a great concern about people like her who've been disabled for a long time.
00:40:26And what are we going to do to help people who really need the kind of help Donna has?
00:40:33And Donna's so positive about it, about her life.
00:40:37Well, I'm positive too.
00:40:39I'm positive something landed on you when you were 19.
00:40:44And I'm also positive you have more resilience than anybody I've seen.
00:40:50And you have an attitude of gratitude.
00:40:53I'd like you to be more specific about what you're grateful for.
00:40:57You know, I use that phrase, an attitude of gratitude, when I'm talking to people who, you know, maybe get a little down or discouraged.
00:41:06And, you know, those things happen.
00:41:07They come and go in life.
00:41:10And I said, Isaac, when I feel that way, I have to remember the blessings I have.
00:41:17I said, I still have three meals a day.
00:41:20I'm not hungry.
00:41:21I'm not on the streets.
00:41:22And, you know, I'm not in the elements.
00:41:25I said, you know, I have people who care about me.
00:41:28And I said, and on top of that, I have a God who's been protecting me.
00:41:33I mean, because just to still be here is a miracle.
00:41:37The fact that I was even born when I wasn't even supposed to survive past three months in my mom's womb, she didn't even tell me that until the year she was dying of cancer.
00:41:47And so, I mean, I now know that would have helped the doctors understand why my spine was so messed up to predispose me to all this.
00:41:56But, you know, she didn't want to upset me.
00:41:59And I understand that.
00:42:00So, you know, but, yeah, I like that.
00:42:04I always use that phrase and attitude of gratitude.
00:42:08My next question is, and this is see how if I can phrase this.
00:42:16It seems to me with your intellect and your positive attitude towards life that you would have taken over that nursing home by now.
00:42:29What's going on with that?
00:42:32I don't know if the administrator would call me a friend.
00:42:35I don't think he would.
00:42:39I've been president of the resident council.
00:42:42Yeah, there you go.
00:42:43Advocate for more staff.
00:42:45And because, you know, people are afraid, they're angry, they're upset.
00:42:50And just trying to, I just say a prayer every time I go, because it's just, just trying people begin to argue.
00:42:58And I say, please, let's lower the temperature, you know.
00:43:02And, yeah, it's, yeah, I don't think they're looking forward to those meetings.
00:43:08Well, I think this is similar to the inflamed glial cells.
00:43:11You know, we need a little inflammation to keep things going.
00:43:15Glial cells on two legs.
00:43:17You're a burr under their saddle, I can imagine.
00:43:21Have you ever sought advocacy outside of this situation?
00:43:25Like the ACLU filed ADA complaints, et cetera, et cetera.
00:43:29Where has that led you?
00:43:30Actually, yes.
00:43:32Earlier on, while I was still in the community, back in the 80s.
00:43:36In fact, there were several things that people were encouraging me to get involved with.
00:43:42There was something called wheelchair program.
00:43:45It was not a beauty pageant.
00:43:47It was to highlight what people had accomplished despite disabilities and with disabilities.
00:43:53So in 1981, I was titled Ms.
00:44:00Wheelchair D.C.
00:44:01And the others had named me Ms.
00:44:06Congeniality.
00:44:07Okay.
00:44:09So I represented D.C. in the national program.
00:44:12And I was first runner up.
00:44:14And apparently my parents were told that when they realized I couldn't sit very long, they knew that the travel nationally would just be too much.
00:44:23But they still wanted to acknowledge, you know.
00:44:26So I appreciate that.
00:44:28Once I found out that I'd have to travel probably 50,000 miles in a year, I thought, no, thank you.
00:44:35Please, no, Lord.
00:44:36So he answered my prayer.
00:44:38I didn't get that.
00:44:40But when I came back, you know, I was asked to serve on the mayor's committee for persons with disabilities on the education subcommittee.
00:44:48And we were able to begin implementing some of the, because, you know, the ADA had just been signed that year.
00:44:55So, you know, we began to implement these things for school children, the Education for All Children's Act and all of that.
00:45:03And that was also beginning to realize that, you know, my own church had very few accessible buildings.
00:45:12And so we were fundraising and trying to get grants to get a ramp put in my church.
00:45:18Meanwhile, a friend I met through someone else was offering to help me get to another Catholic parish that didn't have any steps.
00:45:28And for a couple of years, God bless her, you know, Audrey, she's 94 now.
00:45:35And she would come and put my wheelchair in the back of the car and just go to church and then somebody would help her.
00:45:43And, I mean, people have been so good, you know.
00:45:46And so, I mean, that really, I mean, firsthand, you know, experience with inaccessibility.
00:45:53So, and then one time I did have to file an ADA complaint with the Justice Department and was awarded, you know, and I just used that to help.
00:46:03But anyway, that was a while back, you know.
00:46:07But, I mean, whatever I can do here, even if it's by email, you know, advocacy, I'm involved with the Franciscan virtual justice circles.
00:46:17They advocate for different things and you do whatever you can, at the minimum, we pray.
00:46:24And, but I've sent emails for people who are in states where there's the death penalty, because personally, I believe Christ didn't come to redeem us if he didn't think we all had the capability of change, you know.
00:46:39And sometimes after a person has served 20, 30 years, they're a different person than they were as a youth who did something foolish, you know, and something terrible sometimes.
00:46:50But anyway, that's one of my...
00:46:53Donna, we're going to come to an end here.
00:47:00I got one more question, Dr. Tennant.
00:47:02You bet, you bet, go ahead.
00:47:03I got to have this question answered.
00:47:06Dr. Tennant and I have been asking this question repeatedly, and I bet you know, and you probably have a generous response to it, I can just tell.
00:47:14But what happened to the clergy regarding what happened to us in pain?
00:47:19And why aren't they out on the front lines with us as a civil rights issue?
00:47:24There's a lot going on there.
00:47:26I think a lot, especially in the Catholic Church, they're just not even aware.
00:47:32I mean, they have a ministry that they've been taught from the time they were in seminary.
00:47:37Oh, minister to the sick.
00:47:39It's all very biblical, not for every priest.
00:47:43Some are more involved.
00:47:45But yeah, I mean, they're mostly involved with their parishes and the people who can get to the building and get to these activities.
00:47:54They really aren't that aware of it.
00:47:57That awareness is a big problem for a lot of society, whether you're clergy or anybody else.
00:48:03If people don't know, how can they care?
00:48:06You know?
00:48:07Got it.
00:48:08Mark, I'm so glad you're asking.
00:48:11Let me just say one other thing that Donna and everybody listening, Mark and I have an attitude or a belief that is foreign to many, many people.
00:48:23And I'm going to just say it right here.
00:48:26It is our belief, and a lot of it is religious and spiritual from our own inner beings.
00:48:33We believe that a person should be able to live as long as their life allows them.
00:48:39Despite them being disabled, everybody ought to be able to get whatever medications and health care they need to live out their natural life.
00:48:49That's not a popular belief.
00:48:51We have a lot of people who, even political people, will say, well, if you're 70s, as long as you need to live, we don't want to pay for anybody that's older.
00:49:00But I just want to make it very clear that we sustain a religious belief that everybody, if the good Lord is going to give them 65, 85, 105, that's the good Lord's call.
00:49:15But as far as we physicians go, our job is to try to keep you going as long as you want to keep going.
00:49:22And I continue to be very, like Mark, very disappointed in the clergy.
00:49:30You would have thought that they would be out leading the charge.
00:49:39I, for one, have been criticized over time by the clergy for prescribing narcotics to people for pain and keeping people alive.
00:49:47And I've personally sustained that as a physician who has a belief that they don't have.
00:49:54I know Mark and I, that's another stake we're putting out here.
00:49:59God is on our team now.
00:50:02Oh, I applaud you. I thank you.
00:50:05Keep spreading the word.
00:50:06Thank you so much.
00:50:08One other thing, too, medically in closing.
00:50:11Scoliosis is a major risk factor for arachnoiditis.
00:50:16Everybody that has scoliosis needs to be aware of what adhesive arachnoiditis, and it's a major risk factor.
00:50:26Okay, with that, Donna, I want you to work with Jamie and anybody else who sees this.
00:50:32To coin an old term, we don't want anyone left behind.
00:50:36Okay. All right.
00:50:39Donna, I don't want you to leave us behind.
00:50:41You have a spiritual connection that is rich.
00:50:47And thank you for sharing it with us.
00:50:49Thank you for asking.
00:50:51God bless you.
00:50:52Thank you for what you do for everybody on this line and in your own life, in your own sphere of influence.
00:51:01You're sure welcome.
00:51:02We'll talk again.
00:51:04You keep working with us.
00:51:06Mark, in the time we have left, you sent me earlier a few days ago your experience in dealing with the federal opioid response team.
00:51:21It was a sad, laughable experience you had.
00:51:27Could you tell us what the federal government is doing?
00:51:31They claim that they're trying to help people who can't get their opioids.
00:51:35What did you find out when you investigated this?
00:51:39I found a little website at the CDC.
00:51:43So it's not really federal.
00:51:44The CDC is kind of like quasi-federal, you know.
00:51:47And they have an opioid rapid response team that is neither about opiates, it's not about rapid, it's not about response, and it's not about a team.
00:51:56Yeah, well, what is it about?
00:52:01Well, it's about covering their ass, essentially.
00:52:04They're not doing a very good job, I think.
00:52:08Oh, no, their ass is wide open.
00:52:10Yeah.
00:52:11So they have about eight pages, and I encourage everybody on this call to inquire because I think they need to be poked.
00:52:20But essentially, they have an eight-page website that says opioid rapid response team.
00:52:25And on that, the first picture on the page is of an ambulance.
00:52:30Now, when you say opioid rapid response team and you have a picture of an ambulance, you got an idea that somebody's coming to help.
00:52:38And there's nobody coming.
00:52:42They basically, they try to do a reach out, and basically, I'm the CDC opioid response team.
00:52:50And there may be some other people that are more stealth than me that are responding that way.
00:52:55But I'm using that website as a defense, essentially, in some of my legal stuff where the state of Maine and the state of Oregon and the state of Montana are essentially after me for treating people with pain by telemedicine.
00:53:12And my attorney says I should be stealth, but I cannot keep quiet about this.
00:53:17So sorry, John, if you hear me.
00:53:21This is a critical gap in all of the agencies that are determined to take people off of pain medicines, whether they mean well or not.
00:53:35And I have to suspect that they don't because if they meant well, they'd have fixed it by now.
00:53:40And so they don't mean well.
00:53:42But essentially, you can't take people off of opiates with no other alternative.
00:53:48And you can't promise them, oh, we promise you'll feel better because most people do, like the New England Task Force people do.
00:53:55They just basically force taper people.
00:53:58My patient, well, what I'd like to say about my passion is that I got to play.
00:54:04I would like to, in the few minutes we have left, play a video of a conversation I had with a pharmacist.
00:54:12My patient in Maine, Brandy Stokes, I've been treating her for about a year, very high doses of opiates.
00:54:17She might be on this call. I haven't talked about her.
00:54:21The people from Walgreens have helped her out for about a year since she was forced to be dropped from her pharmacy.
00:54:29When I sent a prescription in from a pharmacy that's been treating her for eight years, her nurse practitioner canceled the prescription.
00:54:36And the pharmacists at that pharmacy have been reluctant to fill my prescriptions and refused.
00:54:42So I called the Walgreens pharmacy, and I'm going to play what happened.
00:54:47This is a conversation between me and the pharmacist at Walgreens after they told Brandy they're not going to treat her anymore.
00:54:58Oh, hi, Ken. This is Dr. Mark Ibsen calling.
00:55:03I'm calling about Brandy Stokes.
00:55:08I don't have anything to discuss with you. I hope you have a good day.
00:55:15He hung up.
00:55:19And I'm laughing because I just want to tear somebody's face off about this.
00:55:22But I called that pharmacist to see what was up with him not filling any more prescriptions that I sent for Brandy.
00:55:30And the pharmacist would not speak to me.
00:55:32Now, that is the ultimate in unprofessional activity as far as I'm concerned.
00:55:36I'm going to get to the bottom of this.
00:55:38And ultimately, Brandy and I are working towards developing some type of injunction to get her treated.
00:55:47Because Brandy was dying when she met me.
00:55:50And she's been thriving since I was able to restore her medications.
00:55:56And now that plan has been thwarted.
00:55:58And I'm mad as hell about it.
00:56:01And, or but, I don't know.
00:56:03I don't know what preposition to put in here.
00:56:06But essentially, this has to be pushed back against.
00:56:09And I don't have the money to do it.
00:56:11And hopefully Brandy and her family can pay some of the legal fees.
00:56:15And we've got a GoFundMe going.
00:56:19And I'm $27,000 down since May defending my own cases.
00:56:24And essentially, I'm not complaining.
00:56:28This is an opportunity for us to make a difference.
00:56:30And Brandy's case may be the one that ought to go national.
00:56:35And that ought to be told on CNN and MSNBC and maybe Fox.
00:56:40So, that's my report from the field.
00:56:44It was kind of wide-ranging and quick.
00:56:46But that's all I've got for now.
00:56:48Yeah.
00:56:49Donna just flashed on the screen that she has her prayers are with you and Brandy.
00:56:56And I echo that.
00:56:59Our prayers are with you and hope you the very best.
00:57:03And we need a universal prayer for all the people out there suffering.
00:57:08Anyway, it's there.
00:57:12Again, we're coming to the end of things here tonight.
00:57:17Keep us up to date on this, Mark.
00:57:19I appreciate you pushing this because it's just not right.
00:57:23It's just not right.
00:57:25I mean, it's hard to grasp.
00:57:28You can't have this drug and they have no alternatives.
00:57:33And then worse, the federal government is saying we have a rapid response team.
00:57:37But they don't do anything.
00:57:39This whole thing is—what do you say?
00:57:45Well, I would disagree with you.
00:57:47I think they do have a response.
00:57:49They do have an alternative.
00:57:50I'm about to show it to you.
00:57:51Here it is.
00:57:54Cross fingers.
00:57:57Yeah, that's it.
00:57:58That's all they got.
00:57:59Only you can come up with that.
00:58:04Does Blue Cross pay for it?
00:58:05That's all I want to know.
00:58:10All right.
00:58:11Thanks again, Jamie.
00:58:12We're going to turn this back to you.
00:58:13It's been a great session, Mark.
00:58:14Thanks so much.
00:58:15Keep us informed.
00:58:16Donna, keep up your spiritual spreading.
00:58:21We're going to call that spiritual spreading in your case.
00:58:24Okay.
00:58:25We're preaching it, baby.
00:58:26We're preaching it.
00:58:27You got it.
00:58:28You got it.
00:58:29Thanks again.
00:58:30Good night, everybody.
00:58:31See you in a week.
00:58:32Good night, Lieutenant.
00:58:33Thanks so much.
00:58:34I'll stay on.
00:58:35God bless.
00:58:36Thanks so much.
00:58:37God bless.
00:58:38God bless.
00:58:39God bless.
00:58:40God bless.
00:58:41God bless.
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00:59:10God bless.
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