 Well, hello everybody. Welcome to another episode of Dr. Jill Live. I am here with my friend and colleague and other Dr. Jill Scofield today. And we're actually neighbors with both practicing in Colorado. And we were just saying when we got on how it's been so neat because we share a lot of the same patients and we've, I know I've heard great things about her. And so we shared a lot of the same paths as far as the kind of complex chronic illness that we both see. Today we are going to dive into specifics on breast implant illness. I know a lot of my women listeners and maybe men who have a spouse or partner, anyone out there. This has been a big hot topic and we're going to dive into some of the discussion on the details around that. But before I do, I want to introduce my guest. Dr. Scofield is the founder and director of the Center for Multisystem Disease. She graduated from the University of Colorado School of Medicine with honors in 1995 and completed her internship in residency into internal medicine at Johns Hopkins Hospital in Baltimore from 95 to 98. She worked for many years as a hospitalist and teaching attending at St. Joseph Hospital in Denver before developing an interest in autoimmune disease. She's published a number of original research papers and regularly presents her work at national and international meetings. She's associate clinical professor at the University of Colorado in the Department of Medicine. She was a recipient of the Dysautonomia Support Network Patients Choice Game Changer Award. I can totally see how that would go. That's amazing for her work in the use of immunoglobulin therapy in autoimmune dysautonomia. Her primary areas of interest are the antiphospholibid syndrome and the emerging fields of autoimmune dysautonomia and mast cell activation syndrome. That's what's really special about our talk today because whether you know it or not, our topic on breast implant illness is kind of going to dovetail. So first of all, just welcome and thank you so much for taking the time today, Dr. Jill. Yes, thanks so much for having me and I have like mutual respect for you as well. So I appreciate the compliments but I look forward to sharing this conversation today about this what I think is a really important topic. Yeah, me too. I am absolutely delighted to have you here because it's such a relevant thing. Before we dive into that topic, I know I always love to know we heard a little bit about your background. You actually trained here in Colorado. I went to Johns Hopkins but how did you get first interested in medicine? What was your path to medicine? Oh, in medicine when I was four, my cousin who was six said she wanted to be a nurse and I said I want to be a doctor and she became a nurse and she's an ICU nurse today and I became a doctor. So I never really wavered from that. I loved watching doctor shows from a young age and just sort of went straight through the That's amazing. So you were six and she was four or was opposite? I was four and she was six. I was very young when I knew that. That is amazing and you know what's even more amazing is you've chosen like I have a very complex like if any area of medicine is so complex and difficult, we're in it, right? And it takes a special person. Is there's anything about like how did you go from internal medicine? You clearly had some experiences that kind of led you down that just don't know me. You antiphospholipid. Yeah, that's a great question. Well, I was going to do oncology and then I quickly I was in a fellowship for that and I quickly realized that was not the field for me. I didn't like telling people they were going to die. It felt like cookbook medicine. The diagnosis was already made and it just felt really boring to me and also stressful trying to deliver the message, a negative message to people. So I took what was going to be a temporary job as a hospitalist and I loved it and I did that while my kids were growing up. I was able to work part time. It was perfect. And then at some point I ran into a couple patients in a row with antiphospholipid syndrome and kind of started to learn a lot about that through these few patients. One of them was a nurse and two of them had POTS and that's when I reached out to Dr. Hughes who is the guy who first described the British rheumatologist who first described antiphospholipid syndrome or Hughes syndrome and we described the link with POTS. And so then I went to the university and did two years of multidisciplinary training in autoimmune disease and while I was there I started a POTS clinic and these patients as you know are very complex and so once you start doing POTS and autoimmunity you quickly start to learn about mass cell activation although it wasn't so quickly because it was a very new and emerging area. I went to work with Dr. Afrin when he was at the University of Minnesota. I went to work with Dr. Goodman, Brent Goodman at Mayo Scottsdale who's got a practice very similar to mine and is a autonomic specialist. And I also went to a lot of international meetings and that was when I first learned about breast implant illness from Dr. Yehuda Schoenfeld who is the guy who described Asia or autoimmune auto inflammatory syndromes induced by adjuvants of which breast implant illness is probably the most common type of Asia. And so my eyes were always open to that because I went to that lecture kind of very early in that two-year training period that I did and basically those patients developed what we now know as long COVID it's very much the same illness it's just a different trigger and so you and I and other people who are doing this work before COVID we were seeing all the same patients but I now ask everybody who walks through my door if they haven't breast implants or have ever had breast implants or also facial fillers which are less known to cause the same thing. And I've seen a few cases of that of the like Juvedermin Restilane and those setting off auto autoimmune and auto inflammatory disease and I think I also first learned about that from Dr. Yehuda Schoenfeld as well that that can be serviced as an immune adjuvant as well. So just for those patients or general public listening let's frame this because I love where you're going and you and I are totally following because we know how these things from our environment can impact our immune system. Let's go back to just antifossil lipid syndrome your doorway into this and describe kind of in general what is that what my patients notice first and what would be the markers in the blood for that and then we'll dive deeper into the triggers in the breast implant. Yeah and that is one of the autoimmune conditions or at least the auto antibodies that can be produced or found in patients with breast implant illness and it's not really called antifossil lipid syndrome unless you've had a blood plot so or severe pregnancy morbidity but it's basically a systemic auto immune disease kind of a cousin of lupus in fact about a fifth of patients with lupus have antifossil lipid syndrome and the syndrome was first described in patients with lupus and it was later found that it's actually more common occurs more commonly without lupus this is so called primary antifossil lipid syndrome and the hallmarks of antifossil lipid syndrome as I already alluded to are blood clots both in the arteries and in the veins really clotting can occur anywhere and it's a very potent clotting disorder it can be a very potent clotting disorder and then serious pregnancy complications like stillbirth, lateness, carriage, preeclampsia, eclampsia, intrauterine growth restriction and but the patients that have pots they don't most often well I guess many of them actually do meet the criteria that the criteria in many of the autoimmune diseases as you know are like capturing the tip of the iceberg but we you know there is actually a code for antifossil lipid antibody positivity so I tend to be followed that kind of strictly I go off the criteria and so most people actually don't meet the criteria for the syndrome but so you could have the antifossil lipid antibodies and not the syndrome because you haven't had a clot and not truly lupus skin manifestations and they don't have they usually don't my patients with pots don't usually have lupus go ahead sorry no as they see much more the antifossil lipid antibodies without the whole sequela exactly right and it's important to catch them before I find if you know somebody has it and you know you can often prevent them from having a clot it's the people who don't know they have the antibodies that are kind of a walking time yes and I love that you mentioned long code because we're seeing what we've already seen for years it's just there's so many more people that are affected that there's more people who have these kinds of syndromes as that virus was a trigger just like all these others it was a major it's just a majorly blows up mast cells yeah and occasionally autoimmunity but more I think mast cells so also just for clarity are you talking like anti cardiolipin and antifossil lipid or what actual test and I cardio well there's three criteria tests one is the lupus anticoagulant which is actually not an antibody test but a clotting test and then there's anti cardiolipin antibodies beta two glycoprotein at one antibodies and then there's a couple non-criteria antibodies and I always test for the non-criteria antibodies too because some patients only have the non-criteria antibodies and sometimes they have two or three of them and I know that they're playing a role in their illness because they have features of the illness including things like libida reticularis which is a lacy pattern on the skin that's kind of a seen in a significant subset of APS patients they have Ray nodes they have refractory migraine they have cognitive dysfunction they have white matter change they have valvular thickening there's various they have low platelet count there's various kind of features of antifossil lipid syndrome that aren't even included at all in the criteria and POTS you know it isn't if I go to the international APS meetings and it's not even discussed you know it's not even on the radar but and I'm sure if you go to the show grins meetings POTS isn't even on the radar either and there's a strong link there I think it's just that you know the rheumatologists they're not they have no training in POTS are not interested in adding that to their skill set because they have two there's too many patients who fit into the boxes that meet the criteria for the FDA approved biologics of retreat that doesn't make sense for them to add that on but it just sort of has left a lot of people falling through the cracks who have these conditions that I know that I know that that these autoimmune conditions play are causative of POTS because if you treat them with IVIG they get better the ones who have those antibodies persistently present and features of that auto those autoimmune conditions so um but you know everything's slow we all know it's evidence is slow in medicine especially in areas where the mainstream have no interest I love that you say that because again we're all for I use meds just like you do and they're very appropriate but some of these big blockbuster biologics they have all the money behind them so of course that's the direction that medicine gets taught if you have a TNF alpha blocker well let's use this and let's use the diagnoses and then the rest of the stuff like you said falls to the the cracks because sometimes it's as much as simple as electrolytes or beta blockers or some of these things that are generic or inexpensive or so um but you're saying that there's just a lot of people in this big bucket of antifascial lipid antibodies and and likeness then the smaller bucket is the antifascial lipid syndrome which includes the clots and somewhere in there also the lupus but we're seeing these larger groups of people with autoimmunity um and then let's link it to we talked about breast implant illness and all these outside things can you take us through how would something like an implant or fillers actually trigger the immune system to attack itself like to make that connection for us for our listeners yeah so their silicone is considered an immune adjuvant so an adjuvant is um a chemical that attaches to an antigen so a piece of an infectious agent or whatnot that makes the immune system recognize it so if you get a vaccine and they take a piece of a virus and they just put the piece of the virus in your body nothing will happen the adjuvant attaches to that piece of the virus and it attracts the immune system so it's kind of a nonspecific stimulator of the immune system and for most people it's okay but for people everything exists on a bell shape curve including how active your immune system if you're over here and your immune system is more active um you may be tipped over into developing asia autoimmune auto inflammatory syndromes induced by adjuvants um and you know in in historical times before we have vaccines which by the way all have an adjuvant except i believe the pneumococcal vaccine um the people who had the less active immune system they all died of infections you know if you go to the fair mount cemetery in denver you know you see all these these tombstones of one year old two year old sick and they were all dying of infections and so now it's these people's turn you know that are getting tipped over by um by adjuvants um and silicone uh was uh is recognized to be an adjuvant now but it's very interesting if you go through the um literature about breast implant illness because up until it was published by the netherlands in jamma oncology in 2018 2018 i believe um 43 cases of um anoplastic large cell lymphoma of the breast and they found an odds ratio of 421 that somebody who had that had breast implants wow so that provided this overwhelming evidence that the immune system was in some way being stimulated by the breast implants because the lymphoma is a tumor of the lymphocytes which are part of the immune system and they're actually the cells that make the auto antibodies and before that every there's publication after publication after publication new england journal medicine fda everybody's saying breast implant there's no such thing as breast implant illness nobody you know and it's right after that paper everything just switched just like a light switch went off wow and now all all these papers coming out oh yeah this is they're associated with this this this and this and i think in the early days to the in the defense of the people who did the early work um part of the problem with breast implant illness is is women develop there's several problems with with it in terms of trying to um characterize it as a real disease entity one is that it develops gradually the latency right it can occur from very quickly after the implants to his latest 50 years and that same time span was also seen in the women who developed the anoplastic large cell lymphoma one to 40 years i think um and so if you get sick 20 years later how do you know it was the breast implants and not so you don't um um and also there the women were not actually meeting criteria for things like lupus or rheumatoid arthritis and instead they were having they probably a lot of people have pots a lot of people have mast cell activation syndrome neither of which was described in or really wreck i should say they were might have been MCAS was the first case report 2007 pots was described in 1983 but like it wasn't recognized broadly by anybody until just the last few years literally right you know and so in both of those conditions can be extremely disabling in and of themselves yes and so people were just having fatigue rashes dry eye hair loss post exertional malaise tachycardia you know all these things but they didn't have a diagnosis so they said they don't have anything just hysterical women yeah and when um two things happened the first was when the Netherlands published this very well done study from their like national pathology database um showing the link with anoplastic large cell lymphoma and then women started connecting on social media and they were like i got mine out and i feel better i got mine out and i feel better i got mine out and so people started saying i want mine out and then doctors some doctors actually listened to the women and so now you know that coupled with that that publication really changed everything and the greatest thing of all i don't know if you're aware you know in october of 2021 the FDA restricted the sale of breast implants to surgeons who agreed that they would personally go through a seven page checklist of all the risks of breast implants with the patient and it could not be delegated to a nurse or an aide or anybody else has to be the doctor to the patient everything has to be initial patient has to be given a copy of it and so now the breast implant businesses are going to go boom like that because there was actually a study asking the public if you before they knew this checklist would you consider getting breast implants in 65 percent of women like yeah yeah that might be good you know and then when they saw this checklist it it went way down to i don't know what the number was like 15 or 20 percent so there's still people who will do it but at least they will know if they start to get sick that they better get the implants out so that was just form consent how it should have been hey everybody i just stopped by to let you know that my new book unexpected finding resilience through functional medicine science and faith is now available for order wherever you purchase books in this book i share my own journey of overcoming life-threatening illness and the tools and tips and tricks and hope and resilience i found along the way this book includes practical advice for things like cancer and crone's disease and other autoimmune conditions infections like lime or epstein bar and mold and biotoxin related illness what i really hope is that as you read this book you find transformational wisdom for health and healing if you want to get your own copy stop by readunexpected.com there you can also collect your free bonuses so grab your copy today and begin your own transformational journey through functional medicine in finding resilience yeah like i mean because surgeons you can't really expect them to know about the risk but i mean kind of you should you know i don't i have a little bit of mixed feelings about that but now they know yeah because you and i see all this aqua so what we see the people who had the implants 20 years ago you know and actually most of the people who i see they already had theirs out they figured out on their own they already had theirs out and the longer you go between the time you had them in and the time you get them out the less likely you benefit or the left to the lesser degree you benefit from getting them out and that that's part of the tricky the tricky part is you can't guarantee somebody that they get them out they're gonna they're gonna be better but most people just they're like there's any chance i'll feel better off i'm getting them out yeah i've had the same so you talk about silicone obviously an adjuvant um tell us about saline with the silicone like because there's still i think oh right yeah people thought the saline implants would be safe but actually the the um shell is made of silicone and so either way whichever kind now they're turned out to be just as risky now i'm not aware of this and you probably are way more than i do but are there ways to test either um that because it's almost like the immune system you pick up little pieces of silicone right and take it and put it into the lymphatic system is there any way to express silicone in the body or antibodies to i think that well there is this reactivity test that i actually have not ordered yet i have a couple colleagues who've ordered it we don't really know you know how it lines up but like if the patient is an out-of-pocket test so if the patient gets in it shows and it's i think it's silicates and so we don't have silicone like but we all need back chemistry with this stuff right um you know there was one patient who had breast implants and theirs came back strongly positive so they took that as evidence that they should a good sign that they should probably get those out but those tests have not been rigorously studied you know like if it comes back negative it probably doesn't rule out exactly and you know the other thing is is that so the immune mediated against the silicone is one hypothesis or one mechanism that probably is true how it develops but the other leading one that's probably less common but still pretty common is a biofilm forms around the implant made of bacteria and mold and what not and the immune system reacts to that and um for a body reaction yeah and maybe the infection itself is contributing to the illness as well either or you know and it's probably a heterogeneous group of patients and then there's a smaller group of patients who actually has an allergic reaction to some component there's a lot of chemicals and heavy metals instead of breast implants too that that's another thing the FDA mandated is the patient has to be given a card with the list of all of the comp the entire components that are included in that implant and it's like ooh yeah once you read it's kind of like dental stuff too there's so many different that's true or even that's actually stuff like all these things right which is actually a form body yeah i'll say because i know i'm sure you see this too we're talking breast implants it's such a big deal a woman need to know about this and if they're suffering to at least think could that be a possibility but the truth is like even a hip implant or a um definitely or anything foreign in our body could be similar in figuring an immune response yeah people get like cheek implants but implant you know that are also made of silicone and chin implants and and those are penile implant those are those are all same right similar so say a woman comes in and they've had breast implants for 10 15 years and they have some autoimmune markers and stuff where what kind of discussion do you have with them about could this be a possibility and how do you navigate helping them decide what to do about it um is there kind of a take us through like a person who might come in and say i think some of those symptoms are related um and what would yeah guide you and guiding them well i always recommend they get the implants out yeah because there's a really good chance that that's a that's a player in the illness and you know you can't guarantee that it's it's going to help but like i said i have only one person in my practice that comes to mind who has not had hers out and she is that exact person that you're talking about um you know i think she actually has an antiphospholipid antibody and symptoms and you know triggers trump drugs if you've got something that's in your body that's driving the process and you try to treat it the treatment doesn't usually work that well exactly it's like mold related unless if someone's in a house exactly mold exactly yeah exact same concept and so um yeah the that i always recommend it okay there's never a reason that i would not recommend it because and you know there's um some people are very talented at doing reconstruction i have on the a slide of um i don't know how to show it on here but i have a slide of a reconstruction by Dr even a g in australia who's a colleague on a physician listserv who is interested in oncoplastic breast surgeon interested in breast implant illness and her reconstruction autologous reconstruction after transplantation looks like the person has implants like a b cup you know yeah i mean and um yeah and so people who you know some people i had one patient who's like god you know but the patients always feel really guilty that they got the breast implants it's my fault i got this endless no no no i love that you say that because i'm just going around it all i someone almost talked me into giving them about 15 years like i just went down that road myself you know like and and it's it's just tempting you know and so this one patient you know had just to kind of misshapen chest like um miss misshapen sternum and just and what not and and she still just felt really bad that she she had the implants and it's you know and now people you know hopefully there'll be more i don't know what what the skill set of the surgeon other surgeons besides dr magias and being able to use autologous fat that means autologous being the patient's own fat and certain flaps that they do with lifts that are not using any foreign substances to create a decent outcome you know i mean that makes the person not completely right chest they feel like i mean there are the people because those are the people i mean probably most of the people i don't know i don't know what percent of people are going you know going for the huge look versus just don't want to be super black exactly exactly i want to but at least those um techniques exist and are probably emerging to be able to give people and i'm sure they're going to emerge really fast now that the implant business is going to yes it has to be immediately bottoming out with that fda ruling i remember hearing that but i did not read the whole part about the yeah it's really like it's they've actually literally restricted the sale to surgeons who sign an agreement that they will go through that document now whether that's happening or not i don't know right but they're they could be held liable if they didn't do it you know because that's what the agreement that they were sold the implants under that premise that would occur so let's talk just a little bit about how this presents we've talked about mass cell and dysautonomia and you and i know well what this looks like for for someone out there who's like what does that look like might i have that because it's so common and i also want to mention you just said was it 2018 the first paper came out for mass cell activation because we've kind of known oh no the first case report was 2007 okay so then the first pub the two publications about how we should diagnose it came from one group in 2010 and another group in 2011 and those two groups are still yep i've seen that that's right totally yeah we're born in group two yeah yeah and i know exactly and it sounds like you've uh lauren's off brand and theothea reedies and some of the leaders have you done yeah you published some work in the mass yeah yeah well we sure and link yeah i was the co-author on the global consensus two criteria okay i thought so dr afrinist first author um and he's really the leader of the consensus two group dr theothea herides is kind of a straddler to be honest so we'll link if you're listening we will link that article here so that you can if you want more if you want yeah i love that article i give it to all my patients because it goes through the politics of where mcast stands in the medical community today and the difference between the consensus one and the consensus two criteria and what we as the consensus two people feel are the problems with the consensus one criteria which are really capturing the tip of the iceberg of patients with mass cell they don't embrace the link with pots they don't embrace the link with dollars down it's like really yeah yeah so i think that uh because i agree it's one of my favorite papers and i thought you were an author on that so yeah you're bringing that to the world there's a lot of authors on there for a reason i know you guys have worked so hard yeah yeah so let's describe for the listeners like i think that i've heard about this what what is mass activation give us just a little overview of that and like how it links to just well let me first explain that there's two arms at the immune system so there's the what we call the innate immune system which is the first responders where the mass cells reside in a few other cells and they're very nonspecific in how they respond but they're very quick to the scene and the masses are the first responders and then there's the sophisticated or acquired arm of the immune system where the lymphocytes reside and the lymphocytes are the cells that take their time they get they get triggered or stimulated by the innate immune system to recognize and they're making very specific antibody against the specific pathogen or virus bacteria and and if there is a mistake in that antibody or not necessarily even a mistake but the the antibody happens to not only recognize that pathogen but also recognize something in your own body which we call molecular mimicry then that is actually an autoimmune disease and so actually most autoimmune diseases are diagnosed by auto antibodies like lupus you have an a and a you have a double-stranded DNA etc a lot of even doctors call everything in this arena autoimmune but really these disorders over here of the innate immune system of which mass co-activation syndrome is one or we really call them auto-inflammatory and that's where Asia autoimmune and auto-inflammatory syndromes induced by adjuans and the people with breast implant illness honestly they usually have both issues so mass cell the masses are the most primitive cell of the immune system and they've actually been around for 500 million years in multi multi cellular organisms which just kind of blows my mind but they they are hardwired to recognize foreign invaders like bacteria and viruses they align themselves or they're present the highest numbers in the parts of the body that interface with the environment where they have the best chance of finding a foreign invader because they are they're like sentinels they're the first responders so they're present in the naso respiratory tract the gi tract the skin and the genital urinary tract in the highest numbers but they're present throughout the body and they also love the nerves they use nerves as a highway to communicate to the rest of the body we're under attack so we see a lot of neuropsychiatric issues in mass cell but the kind of hallmark symptoms which are not present in every patient but would you know clue most people in to start thinking about mass cells would be things like hives environmental allergies anaphylaxis asthma you know the eczema those kind of conditions and flushing and those are what are included in the consensus one criteria mostly but then really it is a multi-system disorder because literally our mass cells throughout the body so we see a tremendous number as I already said of neuropsychiatric issues most commonly anxiety and depression and I see people women come in and they're like I had anxiety from as long as I can remember like three two one you know I just hear that all the time they have insomnia they have depression they have ADHD ADD autism spectrum I'm seeing all kinds of people and autism spectrum has been linked actually with mastocytosis too 13 fold increased risk which is fascinating PTSD OCD ODD all those these even bipolar disorder a lot of everybody who's ever walked through my door with bipolar disorder usually it's kind of poorly characterized they always have mass cell and I'm not saying everybody with those disorders has mass so I'm just saying everybody comes to my practice which is a unique set of patients who often also have POTS and things like that I would agree with you just yeah yeah so then we see any number of geo and then POTS you know not just psychiatric but neuro too so POTS is being number one that autonomic nervous system disorder and other autonomic disorders very very common link with um mass cell activation and it was published I think there's a last year maybe the year before now the link with um mass cell activation and small fiber neuropathy and the autonomic nerves are a type of small fiber nerves so there's a really strong link there um and I I don't like to I just use this phrase very loosely but I think mass cells the most common cause of POTS so I use the causation loosely because causation is very hard to prove but just like if you see enough patients yeah you you know absolutely you know without meeting the consensus one people's insurmountable level of proof that they demand yeah um but you if you're a doctor in the trenches you know a lot of patients so that's good because mass cell is very treatable with simple drugs often and sometimes not even drugs just for moving triggers like changing the diet and getting rid of the fillers and medications and things like that so um what else like bladder trouble like you know urinary infection symptoms without without an infection or some people are diagnosed with interstitial cystitis headaches um seizure-like episodes um any kind of skin manifestation frequent naso respiratory issues like recurrent sinusitis chronic nasal congestion you know all of these things that can just it's this huge number of symptoms that patients can develop and everybody with mass cell activation has their own unique case so everybody has a different combination of those problems and um they respond to different medications and the way in which their illness manifests and might flare looks different from person to person so that's part of the challenge of mass cell activation even though it's very treatable the patient really has to take ownership and try to figure out they have to put on their detective cap and try to figure out all this stuff figures i'm an educator and you're an educator and then the patient has to go that's the primary right for them to start to connect with it so let's talk with that way because we clearly know breast implants are a huge piece of this puzzle in women but there's so many of the things that can be triggers what are some of the common you mentioned fillers and medications different foods um i'm assuming for mass cell yeah like let's go through kind of the categories yeah these so many different things what are some of the common well all the well mold as you know is a major trigger so um but all of the chemicals in our environment which include personal care and cleaning products so it always is that's low hanging fruit it's like get rid of the plastics get rid of the coated pans use the cleaner you know seventh generation free and clear instead of tied in cascade and no plugins please right the plug yeah and different people you know most people if you say if most people with mass cell activation syndrome another piece of it another clue to it is they're sensitive to chemicals yep so if you say to deter any detergents ever bother your skin or sunscreen or toothpaste or any scented products probably 90 maybe 95% will say yes and so there is a small subset of people where those things don't seem to bother them but i'm still like just at least get rid of the plastics and at least get rid you know just do the simple things and then there are other people who are so sensitive they have to go make their own shampoo and things like that they figure that out themselves um so then um all the chemicals in the food quote unquote food so diet diet's huge some people can just eat a change to you know non-processed anti-inflammatory diet and and oftentimes they you know that includes going gluten free and or dairy free and seeing what affect high histamine foods have some people all of those things just matter tremendously and that's all they have to do yeah it's funny because 20 years ago over 20 years ago i had the Crohn's and the breast cancer and all that and i had atopic allergies asthma eczema like the whole atopic thing so exactly you didn't have all that mass cell stuff and i didn't have any idea about like histamine and foods but all the things that were i histamine fermented cheeses and aged meats and cheeses and smoked salmon and bone broths and of kombucha and kombucha oh yeah so i couldn't really healthy foods yeah they're good like all the fermented products and things people are like what's so years ago i didn't even know that connection to histamine but i was like what these foods are all bothering me i took them out later i was like oh it's the whole list of histamine foods right of course yeah well you know your case is interesting because um Crohn's is an auto inflammatory syndrome you see the link with all these other you know spondylabarthropathy inflammatory bowel disease they're all over here they overlap a lot with a mass cell and other things like endometria you know and you just feel like the root problem is in the mass cells yes yeah and there's a higher risk of cancer in mass cell too there's all these growth dysrophysics because the mass cells regulate tissue growth and so if i were to put your case together i would think your root problem was mass cell i agree i don't come to that conclusion yes absolutely 100 yeah it's yeah and then you got the mold exposure exactly throw that on there so let's go uh obviously there's some great treatments and stuff we don't have to go through all that but what i really want to talk about is IVIG you're someone who has used that very successfully i have seen the same tell us about first of all what is it for those listening and then also just like why might that be a treatment for some of the complex cases and where have you found it to be most useful yeah well so first it's basically um immunoglobulin which is the antibody part of our blood the liquid part of our blood so it's it's derived from blood donors you can actually be a plasmid donor i understand they pay quite a lot of money i don't know how much but so and they actually when they make a batch of IVIG it's pooled from something like six to ten thousand donors and the reason for that is the original use for IVIG which has been around more than 30 years maybe 40 years now was for patients who had immune deficiency they had low antibody levels and they're getting recurrent infection so it makes sense that you would use this pooled antibodies from all these people who've been exposed to different infection and had antibodies together to most of the things you would want to cover so and then um and it actually doesn't make any sense really intuitively that you would use it for autoimmune disease you've already got too much immunity so why would you give more and it wasn't really anybody's idea it was just fortuitously found that in there were some kids there was one boy who had um immune deficient he or sorry he had uh yeah he had immune deficiency and he also had ITP which is autoimmune destruction of the platelets so they noticed when they gave this kid his IVIG for his immune deficiency that his platelet count would go up and so then they got a couple other kids and that was how they figured it out and there's there's about 10 different proposed hypotheses for the way in which IVIG might work for autoimmune diseases which are extremely complex immunology but um uh it works it honestly works you can find a paper showing it works for pretty much any autoimmune disease not auto inflammatory but autoimmune um and um so the patients where I use it is a very small subset of the patients that I see it's um patients with um refractory dysautonomia usually pots who first I always even if I know they have antibodies even if they have 10 antibodies I still treat their pots with the typical pots treatments you know the like what I call the band aid treatments like salt yeah and they so constrictors and beta blockers and in volume expansion foreigner um and then I treat what almost always is present is a mast cell because I don't think I have anybody in my practice with autoimmune dysautonomy who doesn't have at least some degree of mast cell and oftentimes they have a lot of mast cell so some people they get better just by treating their pots and their mast cell even though they have the antibodies but the people who don't you know you're missing that piece so that's a small subset of my practice that I treat with IVIG and when I put together my data some years ago I don't remember 2018 I think I published this data because I've been treating doing this for years already um it was 80 almost 85 percent of those patients respond and they respond dramatically like their functional ability increases by 50 percent which is a lot like if 100 percent is normal and 0 percent is dead and 30 percent is bed bound they increased by an average of 50 52 percent is really the people who respond respond dramatically like it's a game changer drug so um and for some reason 15 percent of the people don't respond I have seen that's true with everything in medicine right yeah but I couldn't agree more I'm such a fan for those really tough cases um two questions are you using the higher like autoimmune two grams per kilo dose typically on those pages oh no I start with one I have a published protocol in pots because pots patients don't tend to tolerate IVIG as well like if you give it to the kids with people with ITP they could tolerate it fine got it most of the neurologists they're used to giving two grams per kilogram month dose because they're treating patients with myosinigravus or Guillain-Barre on a ventilator so they just want to slam them but if you give a pot's patient that dose you will give them like such very septic meningitis that would never take that drug again I mean because the mast cells will react initially when you give it right so you're actually like typically they get really yeah so I start with one gram per kilogram per month which so that the autoimmune so there's you referring to high dose so yeah low dose is what we call um for the immune deficiency patients those original patients with the low antibodies and then high doses for autoimmune disease which ranges from one gram per kilogram per month to two grams per kilogram per month and so since these patients don't tolerate it well and I personally think the reason they don't tolerate it well is they they all have some degree of mass activation and IVIG seems to activate mast cells so um I start with one gram per kilogram per month and I also divide that dose weekly I divide it the monthly dose weekly so they get a quarter of a gram per kilogram weekly and then I and then I try to get them eventually to get the whole dose once a month one gram per kilogram once a month and not everybody gets to that and then I'll notch people if people don't get to 80 to 100 I try I'll go let's go to go up to 1.15 gram per kilogram 1.3 I would say the average dose that people settle out on you know you always want to get the lowest most effective dose because it's a burdensome drug so long infusion you know the high of the dose extremely costly um is 1.3 grams per kilogram per month so the neurologist started two when they go down and I started one I love that I'm treating a chronic condition so I'm in a marathon not a sprint they're used to the sprint and they don't recognize this is different or they don't maybe maybe they recognize it but they're just used to giving that and I think they don't recognize that the POTS patients are different and how they tolerate it they just don't tolerate it and if you're on a ventilator anyway nobody's gonna have any side effects no and and like you I treat these patients too and work with the IVIG so it's very I see all of this the real reactive so you have a published protocol we will link that yeah I'd love to link those out for people who want to oh yeah I can send that to you yeah amazing for use in dysautonomia so in our last few minutes the only other thing I really want to cover is we've talked about the breast implant illness how it connects to POTS and mast cell and autoimmunity and why women probably should have them explain it if possible um what about say the woman who's had the x-plant surgery and you mentioned what I see too there's some percentage and I'd love to know what you see in clinic that get better and they get better pretty quickly and then there's a lot of women that struggle and they kind of need the detox is that what would you do after x-plant surgery to kind of help that woman regain her I guess I treat them the same as all the other people like I treat I see if they have POTS I treat their POTS if they have mast cell I treat their mast cell if they don't get better by treating POTS and mast cell then if they have autoimmunity I would offer them IVIG or if they I don't usually use IVIG unless people are really sick and by I define that by inability to go to work or school um because it's just too burdensome to like if somebody's got a functional ability of like 70% like it doesn't make sense to spend you know 200,000 a year and have them hooked up to IV all the day and the drug itself can cause side effects and you know everything else so um so plat I also use hydroxychloroquine or plaque when they're on the people with auto antibodies who aren't as sick enough to justify IVIG um and yeah and these you know there's no studies yet in this context but it just this is just all an emerging area you know so yeah we're all learning we are we kind of be in the front line because there's so many patients who need people like you who are looking at this and looking deeper and um well you have just given us such a gift with your knowledge already and thank you for being on the forefront in these tough cases and also publishing because we need the data for positions right can do um uh people find out more about you find your papers find your work oh I have all my papers on my website which is www.centerformultisystemdisease.com I have all my papers perfect so we will link to that so that you've anyone who download those yeah so then I won't send you that that includes the um global consensus to criteria for MCAS paper is on there um that can really really helpful to get kind of a starting point with MCAS and the politics because a lot of a lot of patients get told oh you can't have MCAS because your trip taste is normal and if you read that paper you all kind of understand that that's not yeah thanks for bringing hope and healing to so many thanks for the work that you continue to do and thanks again for today for your time your effort all of your incredible wisdom it's so great to connect and I just want to say I appreciate you having me yeah all that you are doing for these patients thanks so much for having me you're welcome