Hidden Triggers of Complex Illness with Dr. David Kaufman (Ep 136)

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Dr. David Kaufman: [00:00:00] Anything you can do, anything the patient can do to reduce inflammation will preserve their connective tissue and may let it get a little stronger.

Dr. Linda Bluestein: Welcome back every bendy body to the bendy bodies podcast with your host and founder Dr. Linda Bluestein and the hypermobility MD. Today we are going to be talking with Dr. David Kaufman. Dr. Kauffman is an incredible physician. I finally got to meet him in person back in 2019 when we were at a conference together, and he is just the most kind human being, an incredible wealth of knowledge, and has vast interest in so many different topics that are relevant to the Bendy Bodies community.

I know you're going to love this conversation. Dr. David Kaufman began his internal medicine practice in New [00:01:00] York City, just as the epidemic that came to be known as HIV or AIDS exploded and became deeply involved in both the care and research of HIV positive patients. He has expertise in a variety of chronic, often difficult to diagnose and manage conditions, such as Lyme disease, fibromyalgia, chronic viral diseases, and vitamin and nutrient deficiencies.

In 2017, Dr. Kaufman opened a new clinic, the Center for Complex Diseases, with a focus on patients suffering from ME CFS, dysautonomia, autoimmune diseases, and chronic infectious diseases including tick borne diseases, small intestinal bacterial overgrowth syndrome, connective tissue disorders, and mast cell activation syndrome.

He is a member of the MECFS Collective Research Center at the Stanford University Genome Technology Center and an active participant in several national clinician networks that focus on MECFS, Mast Cell Activation Syndrome, and autoimmune disease. I am so excited for this conversation with Dr. Kaufman.

I'm sure you're going to take away so many great tips [00:02:00] and pearls and be able to help your patients if you're a clinician or help yourself if you're a patient. As always, this information is for educational purposes only, and is not a substitute for personalized medical advice. Stick around until the very end so you don't miss any of our special hypermobility hacks.

Here we go!

Alright, well I am so excited to finally get to talk to Dr. Kaufman. I have been wanting to talk to you for so long, and as you know, I have quite an extensive list of things that I want to discuss with you. I have no idea how much of it we're going to get through, but we'll just see how we do. 

Dr. David Kaufman: I'm looking for this too.

Dr. Linda Bluestein: Awesome. Awesome. I feel like the last time I saw you, oh, wait, we got to spend a little bit of time together at the mass cell conference in Broomfield, right? That's the first time we met in person. And then we got to chat a little bit again at the mass cell conference in New York. But, uh, otherwise we've had.

Seen each other a lot on different meetings and things like that. But yeah, I haven't really gotten to chat and you've 

Dr. David Kaufman: been [00:03:00] moving around. So I haven't really spoken to you since you moved to Denver. So 

Dr. Linda Bluestein: I'm curious 

Dr. David Kaufman: to hear how that's going. 

Dr. Linda Bluestein: Yeah, it's going great. It's great. I love it. And what I love the most about having this podcast is if I'm curious about certain topics, and you might've said something recently during one of our either mastermind groups, or it was CME lectures.

And you said something and I was like, wait, I want to learn more about that. So I added that to the list of things for this conversation. So selfishly, I use this for my own, you know, personal education and development, which, which of course a lot of people are grateful for because they can learn from it too.

Dr. David Kaufman: We do the same thing. That's how I, that's why I love doing our Unraveled. Each time we do it, we learn something where I learned something. It's 

Dr. Linda Bluestein: great. Yeah, exactly. And I did recently speak with your unraveled co host, Dr. Eileen Ruhoi. And so, yeah, it's really exciting to get to chat with you now. So, okay. I know you have been taking care of people with chronic illness for quite some [00:04:00] time.

And for today's conversation, I have a really ambitious list. As I mentioned, I would love to touch on ME CFS. Connective tissue disorders like EDS, dysautonomia and POTS, mass cell activation syndrome, long COVID, chronic viral disease, vector borne illnesses like Lyme disease, mold illness, small intestinal bacterial overgrowth, pelvic congestion syndromes, CSF leak, vitamin and nutrient deficiencies, peptides, and exosomes.

Sound reasonable. Yeah. 

Dr. David Kaufman: It sounds great. Why don't you just wire my brain in the, 

Dr. Linda Bluestein: yeah, I'm going to just like pull it all out. Right. So, uh, so we'll see how much of this we get through. We might have to do a part two in order to really get into some of this, but if we can at least touch on a lot of these things, I think it would be really helpful because I know you are such a vast wealth of knowledge.

So when it comes to chronic illness in general, I know that you and I both see patients that have been to so many different physicians and, you know, they're not. Able to dive deep and figure out what's at the root of this person's problem. What are some of the things that you think are most [00:05:00] frequently missed by our colleagues when they're evaluating these patients?

Dr. David Kaufman: So before I answer that, I'm going to, um, editorialize for a second. I'd rather use the term complex illness than 

Dr. Linda Bluestein: chronic. 

Dr. David Kaufman: And the reason is in mainstream medicine, which is kind of what we, I don't want to say battle with, but the two sides of it. Um, chronic, chronic illness, you know, exists and doctors take care of it.

And, and many, many of the docs take great care of chronically ill patients with cancer and heart disease and, you know, gastrointestinal disease, inflammatory bowel disease, that's separate and different to me than complex illness, which is the, all of the. Very long list. You just went through. Um, and it's different.

Um, because it's truly very complex. Okay. It's not just one organ system. That's to me the crucial difference. You and I were trained in [00:06:00] school organ system by organ system by organ system. You know, they would talk a little about holistic medicine and everything, but it was pretty much Lungs, heart, abdomen, small intestine, large intestine, and never the twain shall meet, you know, never interconnect, whereas to me and to you, complex illness and the things we're going to go into, it's all interconnected.

Um, so in answer to your question, which was. What what doesn't get addressed in the office? Is that basically 

Dr. Linda Bluestein: what most of the mainstream medicine physicians are missing? And I and I love your point about complex illness. So spot on. Yes, 

Dr. David Kaufman: I think what gets missed and it's not just the physician's fault is an in depth, detailed, attentive medical history.

Um, and in fairness to the physicians, our system is totally right. Screwed up. And, um, you know, 95 percent of physicians work for a hospital now or employed by a [00:07:00] corporation and they're told 10 to 15 minutes on a good day. Maybe you could squeeze in a 20 minute person. I take a history for 90 minutes in my first visit.

All right, and that doesn't count the time reviewing all the records beforehand, and it doesn't count what I do afterwards when I kind of craft, write up my note and write up the orders and order the kits and kind of put it all together. So, so it's very hard to do. Complex illness in 10 minutes. You can't.

So, so what happens, I think, and again, in fairness, the physicians, I sort of get it. They start with, um, in, you know, you're, I'm sure you know all this, you know, there's a, tell me your story. There's a review of systems. So, our patients, if they do a review of systems, every box gets checked and that's when that doctor rolls his or her eyes and says, oh, my God, there's no hope here.

This person's nuts. They have a positive review of systems and they walk out the door. So the answer is history. 

Dr. Linda Bluestein: [00:08:00] Yeah, absolutely. I spend a long time taking a history also, and it was William Osler who said, right, if you listen to the patient, they're telling you what's wrong with them. 

Dr. David Kaufman: Exactly. Exactly.

Yeah. It's mind boggling. I'm sure you go through the same thing. Patient comes to me, they've been to 10 doctors, sick for 20 years, and uh, nobody asks some key questions, you know? It's just so amazing. Also, what, what I've really learned, and, and I have to say, this is purely since I started doing ME CFS, uh, 11 or 12 years ago.

I really do start right at the beginning, you know, uh, pregnancy and delivery. I didn't used to do that in HIV patients, I had enough other stuff to deal with. I didn't ask about their childhood illnesses or, or, uh, you know, how frequently did they have ear infections? It was a different, different world.

Dr. Linda Bluestein: Yeah, that makes sense. And whether we're talking about the triad, so that would be, you know, the, uh, EDS types of EDS or HSD, and then [00:09:00] dysautonomia, which can be POTS or neurocardiogenic syncope, or some other form of dysautonomia and mass cell activation syndrome. That's what a lot of us think of is when we think of the triad, or we can think of the Septad, right?

We can add in autoimmune problems and gastrointestinal problems, or we can go to the octad, right? There's like all these different things that that really seem, um, very, very connected. Can you tell us how you, besides doing a very, very detailed history, how you approach these patients with complex illness, very, very long history of Uh, problems and then, like you said, a positive review of the system.

So when you hit the gastrointestinal and the GI and the GU and, and, and, and, right? Neurologic, uh, musculoskeletal. 

Dr. David Kaufman: Yeah, that's a good question. So I think you've probably, or some of your listeners, if they watch Unraveled, have heard me rant over and over and over. Not rant, because it's a positive thing.

Talk over and over and over about septet. [00:10:00] So the, the reason I. Love the concept of septet is it helps organize the history taking and the gathering of information, uh, into, uh, A body of knowledge or of information that helps me think about the patient, um, talk to the patient about what I think is wrong and then plan a workup and treatment because complex illness, illness is overwhelming.

I mean, I, I understand why most doctors don't want to do it. It's exhausting. I, I'm sure you have the same experience. I see. Four to five patients in a day, and I am exhausted at the end of the day. Cognitively, I'm just sitting in this chair like now versus back in New York when I did HIV, you know, I was like managed care practice.

I would see 2025 patients, um, and not be so exhausted. Guess I was a lot younger, but still, so, so the point of the [00:11:00] septet or the triad is as you listen, you can. You can sort of make little, like checkers, you can move them on the board and say, well, that sounds a little like MCAS and a little like SIBO. So I'm going to put it right next to each other and they'll overlap a little bit.

And then, oh yeah, that person has connective tissue disorder. That's probably, that'll be a king on the board as opposed to just one checker, if you know what I'm trying to say. 

Dr. Linda Bluestein: Right. 

Dr. David Kaufman: Um, so I, I find it an incredibly useful structure for listening, questioning, and, and processing the information. 

Dr. Linda Bluestein: That makes sense, because I feel like that is one of the bigger challenges.

I was very conventionally trained, like I believe that you were, you know, yeah. And so you're taught certain things, you believe certain things, and then I feel like once your eyes are opened to how all of these things are connected and the interplay between them, sometimes I feel like my brain is so open that things are falling out.

And as people are telling me their story, sometimes it's hard to organize that [00:12:00] information because there is so much of it. And so I like that you're, that you're using that to organize the information. I think that's a good strategy. 

Dr. David Kaufman: I think it's helpful for the patient also and the families, you know, it, um, I can see it when I talk to them at the end of the.

History, I didn't spend a whole bunch of time going over what I think and I will very often do just what you were doing and say, okay, well, you know, I think you're like a septet patient. This is what that means. And I'll go through EDS and, um, pots and SIBO and motility disorder and autoimmunity and, um, mass cell and infection and possible.

Uh, cranial cervical instability and other connective tissue issues, and it's very helpful for them and for me. 

Dr. Linda Bluestein: And speaking of infection, so what do you see as the role of infection in patients with complex illness? 

Dr. David Kaufman: So full disclosure, I'm very biased towards infection. Okay. Um, you know, Larry Afrin is very biased towards MCAS and, uh, somebody else I [00:13:00] was thinking of today.

Oh, Dr. Miller and her queasy test. So yes. So for me, it's infection. Okay. And that obviously comes out of my HIV experience, I think, but I think it's legit, obviously. What I would say is that over and over and over, uh, when you take that long, complicated history in these patients, there is a, a. red flag waving about infection somewhere in the history.

Uh, if it's a straightforward MEC, it's not straightforward, but if it's an ME CFS patient pre COVID, let's say ME CFS patient, you know, if you ask enough questions, you'll find that, Oh yeah, I had mono in college. I just forgot to tell you, or, um, I had, uh, uh, Oh, Titus, uh, ear infections and strep throat when I was zero to five years old and I was on antibiotics every month.

Well, that's, that's a big deal. That means something. Um, and I, I am convinced that infection is [00:14:00] often the fuse or the initiating event in many of the complex homeless patients. I think it, it. leads to or can cause autoimmunity. It certainly can cause ongoing progressive damage to connective tissue, whether the person has EDS or not.

They just get damaged sooner if they have EDS. Um, and it can cause a whole host of other problems. And if, and if you look, you'll find it. That's kind of how I see it. It's, it's the, you know, build it, they will come look for infection, you're going to find it. 

Dr. Linda Bluestein: Sure. And, and so what's the difference then, because, you know, as you're saying, if you look for it, you're going to find it.

You're also going to find infection, right? In people who are not afflicted by the triad or the septad. So what's the difference between the people who are and the people who aren't? 

Dr. David Kaufman: Yeah. Well, that's the. 64 trillion question, right? I mean, why do I have EBV and I'm fine, you know, and, uh, why, why do I have a, uh, a history of sort of a lax joints in my [00:15:00] shoulder and I'm, I'm okay.

I don't know the answer to that. I, I assume it's genetics and, and levels of exposure. Um, you know, I do think there's a difference between getting ear infections once in a while as a kid or an infant or a toddler and getting them every month. I think that does alter the landscape in the person's immune system.

Um, but, but I don't fully understand why. I mean, I had COVID and I'm fine. I didn't. I haven't gotten along COVID yet, anyhow, um, and I don't have a great answer to that. 

Dr. Linda Bluestein: Yeah, it's, it's so amazing to me because as much as we know there, I feel like there's so much more that we don't know. And that's really challenging and frustrating, of course, at times because people understandably want answers and we have some answers for them, but not as many as we would like to have.

Dr. David Kaufman: And I think about that question all the time. I mean, it's, it's a key question. 

Dr. Linda Bluestein: And what about [00:16:00] hemodynamic instability? So whether a person has POTS or postural orthostatic tachycardia syndrome, or if they have neurocardiogenic syncope or some other form of dysautonomia, how does that fit into the complex illness phenotype?

Dr. David Kaufman: So, I would say that, um, so let's, let's say that we're taught for complex illness phenotype. We're talking about patients who meet criteria for ME CFS or have long COVID and almost all of the long COVID patients I see have ME CFS criteria. So just to be sure we're on the same page here. Okay. So those are the patients I see.

I can think of maybe three or four patients in the last five years who have not had hemodynamic instability, POTS. Dysautonomia, whatever term you want to use. Okay, so I think it is, it is a, if not the major driver [00:17:00] of the symptoms of complex illness and contributes to all the other problems in terms of the interconnection we talked about.

Um, but, but I should say, I, I have a looser definition, so, you know, POTS is officially defined as, uh, you know, 30 beats or more after 10 minutes without a change in your blood pressure. That's academic medicine. Okay. I have patients and you have patients who, when they stand up for 10 minutes at minute 10, they're only went up 20 beats, but they're near fainting and vomiting and nauseous and they feel horrible.

Well, that's POTS. Don't tell me that's not POTS. Okay. If you don't want to use the term POTS, then it's hypoperfusion, but it is. I like your term. It's hemodynamic instability and POTS. You know, and that's not, that's a term that I, people can understand that if your blood pressure and heart rate are not good enough to perfuse, perfuse your brain with blood and your muscles with blood, you're going to have a bad time and that will kick off your mast cells because they won't like it and that will cause [00:18:00] inflammation, which will hurt your connective tissue because that doesn't like it, right?

Dr. Linda Bluestein: Yeah, and they're all interconnected, right? Cause you have the connective tissue in, in the vasculature, which can affect your ability to, you know. Sustain your blood flow to your brain when you're when you have upright posture and then your mast cells can release all their lovely mediators, which can definitely, you know, increase vascular permeability and contribute to orthostatic intolerance as well.

But I totally agree with you. You know, when somebody if I do a Stand up vital signs on somebody. And I do have them stand for the full 10 minutes. I find it very frustrating. Oftentimes they will have been to somebody else. And like you said, they have 10 minutes for the whole visit and they will have done, you know, maybe if they're lucky supine, right.

And then they stand them up or sit them up, check one set of vitals. And then they're like, Nope, Nope, you don't have it. 

Dr. David Kaufman: It just boggles my mind. Linda, how many patients I've seen not only have never had a nasoline test for 10 minutes. I mean, [00:19:00] that. I can kind of understand why it might not get done, who have not had orthostatics.

Right. I mean, seeing a patient who's a long COVID patient. And not doing orthostatics is like not checking them in at the front office. I mean, it's right, it's so basic, 

Dr. Linda Bluestein: right, right, exactly, exactly. And I've seen, I'm sure you've seen crazy things too. I had one patient who I got the actual note from her doctor and he actually did a 30 minute.

Standing set of vitals, you know, he did the supine standing and but what he reported in his note and I never saw any other documentation is just the average, the average heart rate and the average blood pressure and I was like, what are you kidding me? So. It's just so frustrating when you see things like this, because right, there's the whole point of, you know, did you get to 28 beats per minute versus 30?

I mean, we humans arbitrarily picked that number 30 and adults and 40 and adolescents and children, right? It's like 

Dr. David Kaufman: [00:20:00] every other arbitrary number we choose. Like if you're, you know, in the laboratory and blood work, you know, hemoglobin. Is a two standard deviation bell curve issue. So if let's say 12 to 15 is the normal range, I'm making that up.

I don't, it varies by the left. So that means if I'm 11. 9, I'm in really bad trouble. That's ridiculous. Obviously then, or, or vice versa, if I'm 12. 1 and I'm sick, maybe that means something, even though it's normal. Right. You know, the other thing, just since you brought it up in terms of those testing by other doctors is not putting down anything about what the patient says.

Dr. Linda Bluestein: Right. Or 

Dr. David Kaufman: feels or looks like during the test. My other favorite complaint is people who get tilt table tests and the tilt table documents, I mean, tilt tables are the official, you know, academic defining test for dysautonomia and POTS and, and, uh, Um, uh, uh, [00:21:00] QSART and they'll do the test and the blood pressure, the heart rate will go up 20 beats and the patient and the rights, the nurse writes in the thing that patient reports nausea and near fainting.

And then when you read the doctor's interpretation, a normal. Tilt table, right? They didn't go over 30. 

Dr. Linda Bluestein: Okay. Yeah, exactly. I know. I know you should have at the very least right. Patient was highly symptomatic. Heart rate went up by this many beats per minute, but yeah, you need to comment on the symptoms for sure.

Yeah. Makes me, makes me crazy. Also, um, when it comes to long COVID, a question I get a lot, and I imagine you get this as well is are people with hypermobile EDS and HSD more susceptible to long COVID than Other people. 

Dr. David Kaufman: Well, I mean, just based on my own office experience, the answer is yes. Meaning, um, I mean, you know, way more about this than me in terms of EDS, but, um, you know, if we use the old statistic of 1 in 5000, [00:22:00] um, then I should not be seeing quite so many.

I mean, then take, take long coven and take 1 out of every 5000. That should be what I see. And you see, but I would say, um, You know, probably 60 to 70 percent of my long COVID patients have EDS, they have connective tissue disorder. I can't be 100 percent sure that that connect, depending on how long they've been sick, how much of what I am determining as connective tissue disorder came about as a result of her, of the infection and long COVID and constant inflammation.

But five years is a relatively short time in terms of this issue. And if you go back in the history, Oh, yeah, I used to do, you know, cheerleading and splits, and I've dislocated four different joints when I was 14, you know, you get the, you get the history and it's over and over. So it's remarkable. It is definitely a risk factor.

Dr. Linda Bluestein: Yeah, I agree. That's [00:23:00] what I'm seeing also. And it seems like it's very common that people were kind of, you know, managing okay. And then they got. COVID or some other infection. Of course, it could be some different infection besides COVID. And that's when they really started to have a lot of pain, a lot of joint instability and, and other multisystemic symptoms as well.

Dr. David Kaufman: Which is why I have that bias about infection. 

Dr. Linda Bluestein: Yeah. Yeah, exactly. Because 

Dr. David Kaufman: I do 

Dr. Linda Bluestein: see it all the time. Yeah. Yeah. So speaking of infection, and you mentioned Epstein Barr virus already, EBV. I don't know what percentage of the population has had EBV, but it's a very high percentage, right? It's like 

Dr. David Kaufman: 90%. 

Dr. Linda Bluestein: Okay. So with EBV, is it possible to have chronic EBV?

And if so, what do you do about it? And what are the ramifications of that? 

Dr. David Kaufman: So it's a little more complicated, I think, in the sense that if 90 percent of people get EBV, 90 percent of the globe is not sick, right? Right. So it's, it's crucial to understand that we get EBV, which is in the herpes family of viruses.

And [00:24:00] none of those herpes family viruses can be killed by our immune system. So when we get infected and we all get infected essentially with EBV, HHV 6, usually HSV 1, uh, and, um, CMV, um, our immune system is Incredible. Uh, it can't kill them, but it locks them up in jail. It makes them latent or stationary phase.

And for EBV, it locks their, their jail is the B cell, which makes antibodies. So, um, and that's true for all of us. So let's assume I got EBV when I was four years old, playing out in the yard with kids. I didn't get sick. I had no idea it was infected, um, and my immune system took over and got rid of it.

Okay. It can reactivate at any time. That's its job in life. That's what evolution in Darwin is all about. It just wants to replicate. Okay. So if the immune system falters for some [00:25:00] reason, other infection, stress, chemotherapy, cancer, pneumonia, COVID. Um, drugs that virus has a chance to reactivate and that's, that's when the person might get sick or they don't even feel that, but it may impair or impact their immune system further.

Um, so we're all at risk for that. Um, And I, and when we look for it, excuse me, in our complex patients, we see it, I mean, with post, with COVID and post COVID, this is no longer just crazy docs like me saying, look for EBV. I mean, mainstream medicine has recognized that EBV reactivation is a hallmark finding in COVID and long COVID because of the immune dysfunction.

That's also true for some of the other viruses, and I'm sure you'll get to it, but I believe it's also true with some other bacterial infections. 

Dr. Linda Bluestein: So then if we find those. Reactivated viruses. What do we do about them? 

Dr. David Kaufman: Well, I treat them. I [00:26:00] mean, I'll start via antiviral medicine to try to suppress viral activity that usually is effective.

But I think If the model or what I just described is accurate, which I think it is, um, I don't think I'm saying anything unusual, uh, then the role of the immune system has to be considered. And so more and more, I'm focusing and many of us are focusing on how can we boost immune function in these patients?

They don't have EBV reactivation because it's bad luck. That's not why it's bad. It's bad immune system at that moment and anything we can do to boost it will help. Our tools are limited, but, but there are tools we can use 

Dr. Linda Bluestein: and 

Dr. David Kaufman: what kind of tools 

Dr. Linda Bluestein: are 

Dr. David Kaufman: you 

Dr. Linda Bluestein: thinking of in that regard? 

Dr. David Kaufman: Um, so I, um, suggest prescribe a lot of, uh, a peptide called thymosin alpha one.

Um, ironically. A drug or peptide, which is approved as a drug in this country, but not available, [00:27:00] so it's not, it's not even that I'm violating FDA. It's approved. Okay. Um, it can be made in compounding pharmacies. Uh, T A 1 boosts natural killer cells. So it boosts T cell function, which is a key piece of the immune system.

It has, it was approved as an antiviral to treat hepatitis B and C. So it has antiviral properties. Um, I've seen it improve fatigue in our chronic fatigue patients. Um, and it has essentially zero side effects. Um, I mean, the only negative is it's injectable with a tiny insulin needle and it's not covered by insurance, of course.

Of course. So that's a big one that I do a lot. Nutrition, you know, protein intake. How is their overall nutritional status and vitamin status and nutrient status? I measure the vitamins, et cetera. Um, I do, uh, um, Use, um, uh, plasmapheresis [00:28:00] for some patients, which, which does help boost immune function as well.

It's a, it's a kind of not a very scalable treatment. That's the problem because it's very expensive and you have to do it in a, with a machine, et cetera, et cetera. Um, but those are some of the things there are some others as well. Um, plus very careful attention to all the other pathologies that are occurring.

I can't ask my immune system to behave if every time I stand up, I don't have enough blood going to my brain and I always feel sick. So we need to fix the pots. I can't ask it to behave if every time I walk into Nordstrom and smell perfume, I have brain fog and tachycardia because of meso degranulation, you know what I mean?

Dr. Linda Bluestein: Yeah, absolutely. And I believe that it's episode 133, but I'm going to also suggest that people listen to the interview with Dr. Eileen Ruhoi because we did also discuss peptides and plasmapheresis. No surprise because I know [00:29:00] you two spent a lot of time together and you're both such wealths of knowledge, so I definitely want people to remember to go check it out.

Look at that episode also for, for more details about the, about those, uh, therapies. So yeah, no, that's, that's great because, um, I know there's some evidence for, uh, EBV rein, reinfection or reactivation in people with hypermobile EDS and HSD. And I know a lot of people have asked about that and I have prescribed peptides, but I haven't done it as much as I probably should.

Or could, um, so I appreciate that that information because that's something that I think, you know, like you said, there's no side effects. The biggest downside is. Giving yourself a daily injection, right? It's like every day that you have to do 

Dr. David Kaufman: daily or it can be three times a week. I've actually changed my dosing recently to three times a week.

Dr. Linda Bluestein: Okay. Yeah. Okay. 

Dr. David Kaufman: And I think as Eileen probably did talk about, Dr. Ruhoi talked about there, there are many other peptides that I use that one a lot because it's, it's very focused to me on the [00:30:00] NK natural killer cell and T cell arm of the immune system. 

Dr. Linda Bluestein: Okay. Okay. And would that apply for other virus?

Could you extrapolate that to a lot of the other viral infections as well? 

Dr. David Kaufman: You mean the T cell and K cell thing? 

Dr. Linda Bluestein: Yes. 

Dr. David Kaufman: Yes, absolutely. I mean, that's part of how we fight viral infections. Right, right. Um, I mean, just to Bring it back to my HIV days. The reason people with HIV AIDS got opportunistic infections, infections that wouldn't normally make a person sick, is because their T cells, specifically a CD4, declined below a certain number and once it was down low, anything Uh, all infections were ready to party, so yeah, I think it's really a crucial point.

Dr. Linda Bluestein: Yeah. I remember that vividly. I was in Los Angeles in medical school from 1986 to 1990 and took [00:31:00] care of some very, very sick HIV positive patients at the hospital. Various different hospitals. I rotated through at that time. So, 

Dr. David Kaufman: and actually, just to continue the model or the analogy, you know, the drugs for HIV came out effectively in 1995 96.

Okay. So, you know, you'd have a patient who had a CD for account of 10. It should be over 400 and they were basically near death. Okay. And we would start these new cocktails of drugs, which like would be, you know, 10 pills, four times a day. It was, it was just very difficult then, but that same patient literally in a matter of, of months, like.

Two months would be out of bed walking around their T cell count. Their cd four count was now up to 250. I mean, it was miraculous to see. I mean, for me, it was incredible. Um, and for the patient, of course. Um, but the point I'm making is if you [00:32:00] can figure if we can devise ways to improve immune function, the game changes completely.

And these guys were the perfect example of that. 

Dr. Linda Bluestein: Well, thank goodness. I mean, obviously that was such a massive game changer. Those when those medications did come out in the mid nineties. So that's that's really, really huge. And I know you played a integral role in all of that when you were in practice in New York at that time.

Dr. David Kaufman: Yeah, it was quite an amazing time. 

Dr. Linda Bluestein: Yeah. Yeah. Amazing. We are going to take a quick break. And when we come back, we are going to tackle some of the other things on my wishlist. Autoimmune disorders, SIBO, pelvic congestion syndrome, CSF leak. We'll see if we can get to exosomes and a variety of other things.

We'll be right back.

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Okay, we are back with dr. Kaufman talking about all things complex illness Well, I shouldn't say all things but we're touching on a lot of different things right related to complex illness So I want to talk about Lyme and other vector borne infections because I know that you are an incredible wealth of knowledge when it comes to infection and how our immune [00:34:00] system is impacted and Lyme is one of those things and other vector borne infections that I feel like are very confusing for a lot of people.

There's a lot of people. Really extreme views in terms of what we should do about these things. So I would love to hear your approach. 

Dr. David Kaufman: Okay? Um, well, I, I mean, I, I sound that way and look that way just now because, you know, I've really been having a kind of a sea change in the way I think about it. 

Dr. Linda Bluestein: Okay. 

Dr. David Kaufman: Um, so I've been doing law.

I mean, I practiced in New York for 30 plus years. New York is part of the epicenter of Lyme at that time. Um, so obviously I was doing Lyme back then. Uh, interestingly, it was not part of what I saw in HIV patients, but I had other patients as well. Um, so. I used to think, uh, that Lyme disease and, uh, and I don't even like to use the term Lyme disease.

I prefer to say vector borne or tick borne infections because I think one of the [00:35:00] biggest mistakes in the medical infectious disease world and the patient world was always saying Lyme disease and forgetting that there was Bartonella and Babesia and Ehrlichia and Anaplasma. And that was a huge mistake as far as I'm concerned and set us back many, many years.

Okay. That said, um, as an infectious disease thinking doctor, um, if a person has a bacterial infection, I presume that I should be able to treat them and cure them of that infection. That's what you think when you have a patient, uh, Linda, back in your anesthesia days who would, who would have sepsis and you participate in their care and then the ID docs would come in and give them four antibiotics and they expect the patient to get cured.

I've come to the conclusion that that just. likely not the case for chronic tick borne infections. Um, I think it's true if you get a tick attachment and you get a rash [00:36:00] or a diagnosis of Lyme disease within the first weeks and get treated. Yes. 95 percent of those people literally will be cured with one antibiotic, maybe two.

That's easy. What I'm working at, what I'm trying to describe here is the following realization. I have all these COVID, long COVID patients who come in and they're incredibly sick. They are, they meet all criteria for ME CFS. And when I take a history for any patient, ME CFS or long COVID, I will take a careful, what I call tick borne disease risk exposure history or exposure risk history.

Okay. Where did you grow up? What did you do as a kid? Did you play outside? Do you hike? Do you camp? Do you fish? Do you hunt? Have you ever had a tick on you? Do you have dogs? Do you have cats? Have you been scratched or bitten? Did they have fleas and things like that? And what I'm trying to do is assess their risk for [00:37:00] tick borne infection.

Um, and if it's high, I, and they're not getting better, or I, I'm already very suspicious for other reasons, even if they don't have classic quote Lyme disease with joint pains or something, I'll run tests on them and over and over and over and over, they all come back positive. And I don't mean antibody positive.

I mean, active disease, positive fluorescent staining, positive organisms seen in the blood. That patient got infected by, let's call it, let's just use Lyme because that's what everybody likes. That patient got infected with Lyme 30 years ago and they haven't been sick. And now it's showing up in their blood.

So to me, that's a reactivated infection, just like EBV. 

Dr. Linda Bluestein: And 

Dr. David Kaufman: I've just become convinced that that's what we're dealing with here, that these tick borne infections are curable, but in a significant portion of people, they acquire their infection without symptoms like EBV. And at some point in their life, something [00:38:00] happens to disturb their immune system and it reactivates.

Um, so therefore, if that's true, when I treat those patients, I no longer even consider. Or I no longer feel compelled to treat them for cure. I want to treat them to reduce burden of infection while improving their immune system. But you know, this is me. I'm not sure that this is not a widely held belief.

All right. I think Tanya Dempsey agrees with me completely. Um, and I'm sure there are several other, uh, blind literate doctors as they're called. Right, right. 

Dr. Linda Bluestein: Um, but mainstream 

Dr. David Kaufman: infectious disease, you know, IDSA, they absolutely don't agree with this. Right. It's certainly the seed what's left to the CDC doesn't agree either, but it's a big change in concept.

Dr. Linda Bluestein: Yeah, no, definitely. I mean, it makes sense though. You know, so many people seem like they have something happen where suddenly [00:39:00] they get so sick and nobody can figure it out. So I think we need to explore things like that and we need to explore other treatment options. So what kind of treatment options are you looking at for the vector borne infections?

Yes. 

Dr. David Kaufman: Yeah. So I, I mean, I do use antibiotics for those infections. Um, and generally I, I generally find not just one, but often it's, it's all three. The big three. My latest term is B, B cubed. Yeah. B cubed. Right. Um, so Borrelia, Babesia. and Bartonella. Um, and I use the usual antibiotics for that. Um, I don't know if you want names of medications.

Yes, please. Yeah. Yeah. So azithromycin doxycycline can be very effective against Borrelia and Bartonella. Um, clarithromycin and rifampin I'll also use and I'll often cycle between the two. Give a month or two of one, and then a month or two of the other. For Babesia, you have to use a third drug, either [00:40:00] Mepron, which is a Tovaquan, or um, Aricoda.

And again, um, so here's my little speech for tick borne infection, okay? We don't really know how to treat it. We don't know how many drugs to use. We don't know how long to give the treatment for. And we don't have a great way to know you're, you're done. It's like an ID nightmare, Infectious Disease Nightmare.

Okay. Right. Um, so with that in mind, I'll treat for four to eight weeks with one pair of it with one group of drugs and then I will switch. Um, the additional challenge here is that these organisms have a station, a replicating phase and a stationary phase, EBV. Latent stage and a reactivated stage. Okay, and what we've just learned, and this is one of the, to me, great discoveries in academic medicine about five plus years ago, is the antibiotics we always use, azithroxine, doxy, clarithromycin, [00:41:00] cefiroxime, for Lyme specifically in this conversation, are very effective against replicating bugs.

But completely ineffective in stationary phase or latent. Therefore, the patients are not crazy when they say, I felt great on the antibiotics for that when you stop them three weeks later, I feel sick again. Because three weeks later, those stationary bugs look around and say, Oh, wow, cool. We can wake up again and they start replicating.

Dr. Linda Bluestein: Right. 

Dr. David Kaufman: So that those same groups of researchers proved that the drugs don't work in stationary phase and discovered other drugs, which do work. And that has really. You know, increased our arsenal of what we can do and how we can treat them. So I'll bounce back and forth between replicating drugs and stationary phase drugs.

Dr. Linda Bluestein: Um, 

Dr. David Kaufman: and then I will also address the immune system in the same way I described, we discussed with EBV. I'll use the TA1 especially. 

Dr. Linda Bluestein: Thank you for sharing all of that. I feel like [00:42:00] I'm sure you see this too. People are so good. They get so desperate because, you know, they go to regular mainstream doctors will call them for now.

And, you know, they don't get answers. They've got, you know, an accumulation of 10 minute visits over the course of the month or the week or whatever. And, uh, you know, none of them take a take a deep dive because they're not able to, um, So instead they start searching out these other, you know, places that promise a cure for whether it's, you know, the tick borne vector borne infections or other problems.

At least I see this a lot. So there's a lot of charlatans out there and they are, you know, people are drawn to that because they're trying to figure out how they can. Feel better. Do you have any suggestions for people who see these, you know, centers that promise they can cure you for your Lyme or whatever that, um, how you can judge if that's something that's safe or 

Dr. David Kaufman: yeah, that's a huge question.

[00:43:00] Yeah, I mean, and you're right. I see those patients all the time. And I had a new patient recently, um, that came to mind when you brought this up who, who, um. You know, and they were sick and they weren't getting answers. And somebody said, Oh, I think this is Lyme. And they did a test that had one positive suggestion of Lyme.

And then, and then they didn't actually even treat with antibiotics or anything. They treated with all these strange potions and stuff. And it's very upsetting. And I don't, I don't have a great answer other than, um, it shouldn't be that complicated. You know, I mean, it's an infection and, and, uh, at least I would start with the more conventional ways of approaching it.

And I'm not saying, I'm not suggesting antibiotics are the only way I do think herbals can play a role. I don't have the training and the experience, so I don't do herbals, 

Dr. Linda Bluestein: um, 

Dr. David Kaufman: and I don't think there is potent. And I always try to [00:44:00] remind the patient, if somebody's saying herbals, please keep in mind, those are antibiotics.

That's why they're prescribing them. All right. They just don't have that name and need for a prescription. But don't think you're off the hook and taking a drug that kills bugs because that's what you're taking. It's just called berberine or cinnamon or whatever. Okay. Right. Um, And, uh, I would be a little more concerned or suspicious for, you know, when, with treatments like hyperthermia, I think it's interesting, but I don't think there's a lot of proof.

And I think it's a dangerous procedure, especially in a patient who might have POTS. Right. So, but I don't have a great answer to your question, which is how can we help guide our patients because they're desperate. 

Dr. Linda Bluestein: Yeah. 

Dr. David Kaufman: Yeah. Look, it's a, it's the, the, uh, The price of capitalism is that there are people who can take advantage of desperate people and make a lot of money.

Right, right. And the [00:45:00] solution to that. 

Dr. Linda Bluestein: Yeah. The thing that I often tell people is if someone is suggesting that there are absolutes for all of these things and here's, here's, this is going to work 100 percent of the time. This is the simple cure. I feel like that's a big red flag. You know, you're saying we don't know how long to treat.

We don't, you know, I feel like when people are more it's going to work. Accepting the complexity of these incredible, you know, vast infections that can affect people in so many diverse ways that that's the kind of person you want to see. You want to see the person who understands that these conditions are very, very nuanced, and we don't have all the answers 

Dr. David Kaufman: I would add.

And, you know, we both may get in trouble with this with some, some colleagues, but I would say anytime somebody tells a patient. Well, I just know this is Lyme. I can tell. I can feel it, right? You should walk out the [00:46:00] door. That's, I mean, we do have tests. The tests aren't perfect, but to say you can tell it's Lyme, or you feel it's Lyme, or your muscles tell me it's Lyme, that's B.

1. and I, Yeah, 

Dr. Linda Bluestein: no, I think that's a that's a very good tip. Okay, so I want to shift gears a little bit and talk about pelvic congestion syndrome. So I know this is something that studies lately are revealing that more patients that have pots as we talked about earlier, just are. You know, some form of dysautonomia, it's more common that people will have congestion of the, uh, venous vessels in their, in their pelvis.

And sometimes people get stenting for those vascular compressions or this venous congestion. I would love to hear what your experience is with this population of people and what your experience is with the success of stenting type procedures. 

Dr. David Kaufman: So, so pelvic compression for me is, is the new, uh, Vector borne disease.[00:47:00] 

Okay. Um, it's just, my eyes have just been so exploded open by this. I, I, you know, fully confess, I would say a year, 18 months ago, never crossed my mind. I, I had no idea. I mean, I knew the names of some of the things, but I never, I never looked for it. 

Dr. Linda Bluestein: I did 

Dr. David Kaufman: look for malls, um, and, uh, superior mesenteric syndrome, artery syndrome, but the pelvic congestion stuff, Mae Thurner and, uh, Nutcracker, Off my radar, totally.

Okay. Uh, and as usual, or as often happens, mastermind, the conversations on masterminds, our listserv really opened my eyes. Okay. There's a, there's a few people there who just, I just can't tell you. It was like, it was like getting a one year college course in three days. It was like, Oh my God, this is, this is just amazing.

So I have started looking for it. And the reason I started looking for it aside from Okay. That it made sense. And it was so [00:48:00] interesting is probably like you, I have a population of patients with POTS that is totally resistant to treatment. 

Dr. Linda Bluestein: I can 

Dr. David Kaufman: dial through every goddamn drug we have and, and they still have tachycardia and hypoperfusion and they're miserable.

And once I started looking, uh, for pelvic compression, indications of pelvic compression syndromes, I'm finding it. I mean, again, it's, it's kind of like the build it and they will come model again. Every time I look, I'm finding it. I send these patients to the group in Denver, to the, to the, uh, Brooke Spencer's group.

Dr. Linda Bluestein: And. 

Dr. David Kaufman: Over and over and over. We're finding it. And it makes perfect sense. You have a compression of a major vein, the iliac vein or the vena cava or some combination. And now you can't, you can't send enough blood back to the heart. Well, if you can't send the blood to the heart, when that ventricle pumps, it doesn't pump out enough blood.

And so not enough goes to your brain [00:49:00] and not enough goes to your muscles. Your pan hypoperfused, your whole body's under perfused and you feel horrible and you're not going to ever feel better. Until we get that fixed. So it's a real eye opener thing and I think it's huge. Um, I'm not sure it will be the next question, but the next question in my mind is, is it more common in connective tissue patients versus non EDS patients?

I think it probably is for a lot of pure Um, biochemical biologic reasons, meaning that the stiffness or lack of stiffness of the blood vessels, they're more easily compressed. Um, but again, I would say the majority of the patients that are coming back from Denver with positive diagnoses also have a pre existing EDS.

Um, diagnosis, and I've been so blown away by this that I'm at the point where I'm starting to actually refer after the first or [00:50:00] second visit as opposed to after six months of trying to treat POTS. 

Dr. Linda Bluestein: Really? 

Dr. David Kaufman: Because I don't want to miss it. Wow. 

Dr. Linda Bluestein: Yeah. And so they're going out there for diagnostics and for treatment or how does that work?

Dr. David Kaufman: So the way I do it is, um, I used to try to get the scans done that they do. And I, it's, I find it impossible to get the, uh, radiology people to do it. Um, Rick Spencer and her group have a very specific, very detailed scanning protocol, MR, MRV protocol. Uh, and so I do something, I, Never have done in my life.

Actually, I refer before I do anything. In other words, I used to do my own workup and scanning and everything, and then refer kind of like an old fashioned internist, you know, but here I just say, I think this is the problem. I'm going to refer you right away to MIPS. That's the name of the group. And they will have an intake with the nurse practitioner.

And then, um, if. Often [00:51:00] they have had scans that are not, um, Brooks Protocol, but they're able to see things that weren't properly reported read out. Right. As often happens. Yes. If you know how to look for it, you can find it. Yes. And so then they will either make that diagnosis then on some other MRI that was done, or they'll, um, then order this scan.

And if the scan confirms it, then they fly to Denver and they get further evaluated with intravascular ultrasound and then stented. 

Dr. Linda Bluestein: And what kind of outcomes are you seeing? 

Dr. David Kaufman: So it's a little too early for me to, um, answer well, uh, because I, it's taking months to do this. I mean, I, I'm sure there's many other docs like me, so we have overwhelmed her group.

Right. They overwhelmed, um, uh, for good reason because they're really, really good. Um, so it's too soon for me to say I've had, um, some patients get the stent and minimal change. Um, I happen to think [00:52:00] the reason for that is they still have their infection. They still have tethered cord. They still have CCI.

They have all this other stuff. So fixing one thing stands to reason, if you believe in complex illness, fixing one thing is going to solve the problem. Or all the problems. Conversely, I had a patient this week who had her stent one week ago and she already feels the difference. She can, she can all of a sudden read books that she couldn't read.

She can go out and do stuff. So it can be quite traumatic. 

Dr. Linda Bluestein: And it's important to point out that Dr. Kaufman is practicing and are you, are you still in Seattle? Yes, you're still in Seattle. Okay. So you're in Seattle. And actually Dr. Spencer's practice is 18 minutes from my house. So, so she's around the corner from me.

In fact, I was thinking of going and physically doing a podcast interview actually at her clinic, um, you know, in person. Yeah, I think it would be really great. So I really appreciate you sharing all of that. I want to come back to peptides again, just because I feel like this is something that [00:53:00] A lot of people are going to be really intrigued by, and so whether it's BPC 157 or GHK or, you know, uh, some of the other ones that you've already mentioned, are there certain peptides for connective tissue disorders that you feel like are most worthwhile trying?

Because as you pointed out, you know, it's not covered by insurance, so people are having to pay out of pocket, and this is a population that already might not be able to work, so they're on a limited income, and so it's, you know, really important to get the most bang for the buck. Yeah. 

Dr. David Kaufman: So again, I think the easy answer is we probably don't know for sure.

Okay, right. Um, there's certainly a lot of chatter discussion that GHK copper can improve connective tissue. I don't think I've ever seen a nice, neat study to prove that. But there is a lot of discussion. I can't say I've seen it do much. I think I would take a slightly different approach to how to use peptides in [00:54:00] connective tissue disorder.

And. Focus on the concept that inflammation is bad for you and for me, and I don't have, I don't think I have connective tissue disorder, but it's still bad for me. That's what makes us grow old and get sick is chronic inflammation. 

Dr. Linda Bluestein: It's 

Dr. David Kaufman: a lot worse for anyone with EDS. Therefore, anything that I can do, anything you can do, anything the patient can do to reduce inflammation will preserve their connective tissue and may let it get a little stronger.

Okay. So it's, I guess the difference here is prevent further injury versus fix the tissue. I don't know how to fix it and I'm not sure anyone fully knows. So I would use the peptides to reduce the inflammation and that would be BPC 157, thymosin beta 4, uh, thymosin alpha 1, um, and then some of the, some of the others like GHK copper, but I would also look at.[00:55:00] 

Ways to, um, this is a whole nother podcast, wait, wait, ways to impact mitochondria because at the end of the day, uh, you know, if you think about it, the mitochondria and the chronic inflammation, they're part of the same problem, part of the same issue. And if we, and if we can't make better connective tissue, but we can fix mitochondrial efficiency and function, that will probably have a huge payoff.

Dr. Linda Bluestein: Yeah, no, that makes sense. And I, and I would love to have you back to talk about mitochondria. In fact, maybe we could have a three way conversation for that one with, with, uh, with Eileen. I was going to 

Dr. David Kaufman: say she should be on there. 

Dr. Linda Bluestein: Yeah, 

Dr. David Kaufman: that's really her. 

Dr. Linda Bluestein: Definitely. Let's before we wrap up, cause we're going to be running out of time here before too long.

You've been so generous with your time and I really appreciate you sharing so much fabulous information with the audience. What about exosomes? Is this something that people should be aware of, look into, et cetera? 

Dr. David Kaufman: Uh, okay. Well, I purposely did not bring that up before, but now I guess I'll have to. Um, [00:56:00] so exosomes are a cellular vesicles.

They're, they're not immunogenic. They don't cause an immune reaction. They are everywhere in our body. They're, they're like. They're like part of our switchboard or our motherboard. If you think in terms of computers, stem cells, which people use for treatment, contain trillions of, of exosomes. That's one of the ways they work.

And the stem cell delivers the exosomes along with some other functions to wherever there's inflammation. So that's why people do stem cells. Exosomes can be, um, purchased, manufactured and purchased. Uh, the exosomes that I'm familiar with are made from placental tissue. So they're the youngest, healthiest point in life, okay, in life, and they contain literally trillions of signaling molecules and protein building or mRNA molecules, which when infused into a person or.

Rubbed or put on the skin, because a lot of it is used in [00:57:00] aesthetics, it's like a guided missile. It moves towards areas of inflammation and it begins to help repair those problems. And also from what I see in the office with patients, it resets the immune system. It's kind of like a pushing a reset button and decreases autoimmunity, increases immune function.

Uh, so they're, they're quite extraordinary. Wow. It's definitely one of the frontiers of medicine. 

Dr. Linda Bluestein: Mm hmm. Yeah, definitely. And where do people go to get exosomes? 

Dr. David Kaufman: Uh, well, I, I mean, some physicians give exosomes, is that what you mean? 

Dr. Linda Bluestein: Yeah. So some physician's offices would be. Right. A place. Okay. 

Dr. David Kaufman: Yeah. And like I said, it's actually pretty, pretty active in the dermatology aesthetic medicine plastic surgery world.

They use a lot of it. It's used in burns to speed healing, uh, wound healing. Um, and, uh, I'm sure it's out in the longevity anti aging world as well. I [00:58:00] think exosomes are incredible. Uh, I have seen them, seen them change people's lives, you know, I mean, patients with chronic fatigue syndrome and, and law and or long COVID really get better.

Their fatigue gets better. Their brain fog gets better. The problem with exosomes is that they're not usually durable. So often the person will need to have another infusion or treatment after two to four months. I've had a single patient who was one of my worst mast cell activation patients, worst meaning I just could not get.

Matt couldn't control it. Okay. And I won't go into the whole history, but it was really amazing. She got a single treatment and I took care of her for like eight years, nine years. She was actually one of my first MCAS patients. I remember talking to Larry Affren in the parking lot for an hour. So I gave her a single dose of exosomes and I have not heard from her for over a year.

She's all better. Wow. And that's, I find it hard to believe [00:59:00] frankly, but it's true. 

Dr. Linda Bluestein: That's incredible. 

Dr. David Kaufman: But yeah, exosomes are great. Again, no side effects. The big problem with exosomes, they're not FDA approved, which is why I wasn't going to bring it up because I didn't want to get in trouble. 

Dr. Linda Bluestein: Well, we talk about a lot of things that are either not FDA approved.

We use a lot of things off label, of course, because there is nothing that is FDA approved for, for EDS and there's nothing that's FDA approved for POTS. So we're, we're really stuck with extrapolating from other conditions and trying to get creative. 

Dr. David Kaufman: If we do talk again, we can talk about off label approved drugs like rapamycin because that's a whole other huge topic.

Dr. Linda Bluestein: I think that would be a great conversation. Definitely. What have I missed? I know we, I wanted to talk about CSF leak and vitamin and nutrient deficiencies. I don't know if you have any, you know, comments about that in the last few minutes before we start closing up. 

Dr. David Kaufman: So you probably know way more than me [01:00:00] about CSF leaks.

The problem there is it's so hard to diagnose, right? I think it's, it's, it's one of those. Interesting diagnoses that are easier to consider to have a low threshold to consider and easier to take a history that's very suggestive of, but very difficult to prove, right? The scanning drives me crazy. And, and as a result, you get, as a physician, you end up in the.

Positioned with the patient of saying looks like a CSF smells like a CSF quacks like a CSF Maybe we'll just try a blood patch and see what happens and that's that's not medicine in many ways because it's got risk, you know Right, 

Dr. Linda Bluestein: right It's such 

Dr. David Kaufman: a huge problem And again, as you know way better than me in our EDS patients when they have thin leaky or fragile dura Their risk for for leaks is huge and their risk for Uh, high, high [01:01:00] intracranial pressure and then elite pops the leak and then they're low pressure and then the leak seals and they're high pressure.

It's horrible. It's horrible for the patient. 

Dr. Linda Bluestein: Yeah, it is. It is so. Yeah, and as an anesthesiologist, I have done lots and lots of blood patches back when I was working in the operating room, but of course, you know, at that time I was doing blood patches on people who had had a spinal tap or something, you know, a spinal anesthetic, or they'd had a spinal tap for ruling out meningitis or something like that, and so that was very different because you knew where you put the hole in the dura.

You know, 

Dr. David Kaufman: as opposed to a blind patch where you're just pouring some blood and hoping it goes to the right spot, 

Dr. Linda Bluestein: right? Right. Or, or an epidural where you actually accidentally punctured the dura and then again, you know, where your hole, your hole is in the dura so that you could go one level below and you knew exactly how much blood to take out.

So, yeah, it's, it's when I first heard about spontaneous CSF leaks. I was like, my mind was blown. It's like, really? That's like [01:02:00] wild that that can happen. But it makes sense. Like you said, connective tissue. If it's weak everywhere, um, then, you know, all kinds of crazy things can happen. 

Dr. David Kaufman: Exactly. Exactly. 

Dr. Linda Bluestein: Yeah.

And small intestinal bacterial overgrowth is another thing that people with these conditions are more gastroparesis, right? And so they end up with it. Bacteria growing in their small intestine, which could be, of course, challenging to diagnose and treat. So, 

Dr. David Kaufman: so that's another obsession of mine. I think I used that word on one of our Unravel podcasts and I've had several patients throw it back at me.

Oh, really? Yeah. I mean, I, I think as I said about POTS, I think the two biggest drivers of disability, of pathology in our patient, of symptom pathology or symptoms, uh, are POTS and hyperperfusion and SIBO with leaky gut. So that's the bad news. The good news is both are treatable, 

Dr. Linda Bluestein: you 

Dr. David Kaufman: know, manageable. But I think SIBO is huge, just [01:03:00] huge.

And over and over and over like. Some of the other infections and things we talked about over and over and over. I'll have a patient who said, Oh, I've been fine. I just have had, they're 40 years old, uh, long COVID. I've been fine my whole life. The only problem I had is IBS since I was 18 IBS, you know, in, I think the statistic is 60 percent of IBS is SIBO something along those lines.

I'm sure Lenny Weinstock has better numbers than me, but that's telling. So then I think about that, let's say it was SIBO and they have leaky gut for 20 years. Yeah. Right. And it brings me back to the question you asked earlier. How come some people get sick and others don't? I think 20 years of a leaky gut are going to set you up for long COVID.

Right. So I think it's huge. 

Dr. Linda Bluestein: Yeah. Yeah. Fascinating. All right. Well, I like to end every episode with a hypermobility hack. And so do you have some hacks that you could share with us? 

Dr. David Kaufman: [01:04:00] Um, I mean, I mean, the main thing that I would say is something I already said, which is anything that can be done to reduce inflammation.

Uh, and I don't just mean with drugs. I mean, in lifestyle, uh, you know, if you don't sleep well, that's probably going to be causing some inflammation. If you, if you eat. Not such great food. If you eat junk food, if you eat diet soda and stuff like that, those are inflammatory products where they cause inflammation downstream.

Um, so I think that's the main thing I would say. And then beyond that, the sort of concept that we use a lot in the world of pacing 

Dr. Linda Bluestein: and. 

Dr. David Kaufman: And not overdoing it. I mean, I think one of the things I see happen, and this isn't just for EDS, so I'm not quite answering your question, but, um, patient starts to feel better, and then they go out and they do all these things because they feel better, you know, and I don't blame them.

I would do the same thing. And they, they really go out and they shop and they. Go out to eat and they see their [01:05:00] friends and then they crash and they just overdo it. It's so hard to stick to your pacing when you suddenly feel so much better. And then when you do that, if you have EDS, if you have connective tissue disorder, that causes inflammation and that's going to.

Potentially hurt it more. So I don't have any nice neat hacks. Yeah, 

Dr. Linda Bluestein: no, those are great hacks. I mean, that the pacing thing is so hard because like you said, you're, you don't feel well. So then you aren't able to do a lot of the like, maybe household chores or different things. You're not meeting with friends.

You're not doing all these things. You're not interacting with your kids or whatever it might be. So then you finally feel a little bit better and you, you feel like you need to catch up with all of that. So yeah, it's, it's a vicious cycle. I, I have EDS, I have hypermobile EDS and I definitely went through the boom and bust cycle.

I like to call it many, many times before I finally figured out, okay, it's really important [01:06:00] to pay attention to how my body's feeling and make sure that I use my energy a little more appropriately. 

Dr. David Kaufman: Oh, just one last thing I'd say is, um, the reason I think mitochondrial pathology, mitochondrial function is so crucial here, and there's so many reasons, okay, and that's a very simplistic statement.

We all know how important mitochondria are, but in terms of connective tissue specifically is I can't change your genes. That seemed to have caused your connective tissue disorder. But if your mitochondria are healthy, efficient, and functioning well and producing adequate amounts of ATP and all the other miraculous things they do, that will certainly help your connective tissue be stable.

And I suspect, although I don't have proof, it may actually help build better tissue. 

Dr. Linda Bluestein: All 

Dr. David Kaufman: right, we don't have any evidence that it's in an EDS patient. I don't think we do in EDS patient. It's a [01:07:00] lack of ability to repair. It's really a risk of fragility. And maybe if we can improve the repair technology, that would be the ultimate hack, you know?

Dr. Linda Bluestein: Before we go, can you share with us what projects you're up to? I know you are always so busy with so many different things. And I would also love to know where to find you where I know where to find you, I should say. But I would like for you to share with other people where they can find you and learn more about your incredible work.

Dr. David Kaufman: So, um, I've done these studies over the last few years with oxaloacetate. I think you're familiar with that. That's a supplement that, uh, Consistently in every study, and we just submitted our paper for the latest randomized control placebo controlled study. So this is. The gold standard in science, same results in each study, two thirds of patients who take oxaloacetate have a significant decrease in fatigue within that two thirds, another [01:08:00] almost two thirds are ultra responders.

So where the, uh, 25 percent decrease in fatigue would be the usual ultra responders can have 50, 60, 70 percent decrease. It's, it's remarkable. Um, but it's a little expensive, uh, as a supplement, but it, so I've done a lot of that work. And now I'm, I'm, you know, we're working a lot with rapamycin and doing this study with Cimarron where we are, um, uh, his lab is, has discovered and is, is measuring, uh, these proteins, which tell us when autophagy is impaired and autophagy is.

Upregulated, which is what rapamycin is all about, and then we can correlate the upregulated autophagy after the patient takes their rapamycin. We correlate it to cognitive and fatigue measurement measurement tools that show. That those tools tell us the patient's [01:09:00] feeling better as their autophagy increases, which is very exciting for obvious reasons.

It's exciting in terms of taking care of patients, but it also means we can then use his proteins proteomics to begin to predict who might get the greatest benefit and to also, uh, determine the best dosing. So that I'm totally excited about. And rapamycin is amazing. It's, there's just so many things that it does.

Dr. Linda Bluestein: That's incredible. Wow. Wow. And where can people find you and learn more about your work? 

Dr. David Kaufman: So, as you know, Eileen Ruhoi and I have this podcast. Um, you're way ahead of us. You said 133 was it was hers? Uh, 

Dr. Linda Bluestein: yeah. Hers I think was 133. So 

Dr. David Kaufman: I've been spending a lot of my time downloading the Patreon podcasts to move them to 

Dr. Linda Bluestein: YouTube, 

Dr. David Kaufman: uh, and we have about 65 hours of those podcasts, so we're in the process of moving them.

So they're on our YouTube channel, uh, and that's free. It's just out there for people to look at. [01:10:00] Um, I think they are really helpful for patients. We love doing it. It's really fun to do together and I hear over and over and over from patients how helpful it is. Uh, I just wish more physicians were watching.

That was our original goal. To, uh, you know, use it as a, as a teaching tool, but that hasn't quite happened, but that's why we moved it to YouTube. So they have no excuses. They don't even have to spend money to watch. 

Dr. Linda Bluestein: Right. Right. And, and you know, this, this podcast, we did a survey not too long ago and 20 percent of the audience is healthcare professionals.

Now of course, that's right. Wow. Yeah. So it's physicians and physical therapists and yeah. So, so hopefully this will also get people pointing to the YouTube 

Dr. David Kaufman: channel up then 20 percent that's great. 

Dr. Linda Bluestein: We will. Absolutely. Most definitely. 

Dr. David Kaufman: And believe it or not, I'm on blue sky. I finally gave in. Eileen has hassled me all these years.

Why don't you go on Twitter or within all that? I, and I didn't want to, but I just did it. The problem is I'm spending most of my time on blue sky doing [01:11:00] political ranting and that's not so good. 

Dr. Linda Bluestein: Oh yeah. Cause you're busy. Well, I'm so glad we finally got to do this. I've literally wanted to do this for years.

I mean, let's see. I would've, I would've first met you. It was before the pandemic, so it was Oh, yeah. Yeah. It was waiting before. I think that, yeah, that conference was in April of 2019, I think. Yeah. So, well, thank you so much. Yeah. It's been great. Thank you for having me. It was great to see you. Yes, absolutely.

Absolutely. And I look forward to seeing you in person next time you come to the area. 

Dr. David Kaufman: I will. We will.

Dr. Linda Bluestein: That was such a great conversation with Dr. Kaufman. I had a really long list, of course, of topics that I wanted to cover, and I thought he did a really fantastic job of touching on basically everything that I really wanted to address with him. So that was really fun. I want to thank you for listening to this week's episode of the Bendy Bodies with the Hypermobility MD podcast.

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