Full Transcript Introduction to Burning Mouth Syndrome and Mast Cell Activation 0:01 Hi, good afternoon everybody. 0:04 We are back on Instagram talking about burning mouth syndrome and mast cell activation. 0:11 we did this last month, but unfortunately it didn't save to Instagram. 0:16 So I'm going to do it again and hopefully we'll be successful or I'll successful in saving the recording to instagram so people have access to it later. 0:27 So I want to tell you a little bit about my journey taking care of patients with burning mouth syndrome and how I got into it and what mast cell activation 0:36 has to do with Burning Mouth Syndrome and other neuropathic pain conditions. 0:41 Early on in my experience as an anti-aging practitioner, working with hormones and mainly with women who are going through the perimenopause and menopausal transition, 0:55 I had a patient who wrote a testimonial about how successful her hormone restoration program was in helping her perimentoposal transitions symptoms. 1:05 And in that testimonial, she mentioned burning mouth syndrome. 1:10 And she said something like, my energy in the two months I've been on my hormone program, My energy is much better. 1:17 My moods are better, by libido is better my muscle definition is. 1:21 Better and my burning mouse syndrome isn't nearly as bad. 1:26 And we posted it on my rudimentary at that time website 15 years ago and didn't really think much about what burning mouth syndrome was until other people 1:38 started approaching me and saying, I have burning mouse syndrome. 1:40 Do you treat that? 1:42 And I had to say, Not really, but I will look into it. 1:48 And so I did a huge amount of reading in the scientific literature and thought, why would hormones help a pain condition? 1:57 And of course, in 15 years since that initial foray into the science literature, there's been a lot of information about what hormones have to do with 2:08 chronic pain conditions and how hormones can help. 2:12 So at the Sklar Center, we have a number of ways of addressing burning mouth syndrome. 2:19 And in addition to the usual medical approach, which is to use either anti-seizure medications like gabapentin or anti depressant medications,
Hormones as the Foundation of Treatment 2:30 like Paxil or Prozac, We use hormones really as the foundation of our treatment program. 2:38 and we have been successful in anywhere from two-thirds to three-quarters of our patients getting significantly better and significantly means It's not 2:50 ruling your life anymore. 2:51 And those of you who have Burning Mouth Syndrome that is significant, understand how it rules your lives. 2:59 How chronic pain depresses you, makes you anxious, cuts you off from socializing, and cuts off living your best life. 3:10 So hormones turn out to be the foundation of what we do because it's been so successful. 3:15 Some of the other approaches we have, which have added to that, are replenishing vitamins like vitamin D, vitamin B12 and folate and other B vitamins that 3:27 are so important to nerve function, replenish those vitamins. 3:31 looking at minerals that are deficient like zinc and iron, which have been associated with worsening pain in neuropathic pain conditions. 3:42 We treat viral infections, which for some people seem to be an underlying cause. 3:48 Things like herpes virus, herpies type one and two varicella, the virus that causes chicken pox and then later on in life shingles. 3:58 These have been associated with burning mouth syndrome and in some patients treating them with antiviral medications has brought about relief of pain. 4:11 One area that we explore, and it's been shown in the scientific literature, there's a few articles written by Dr. 4:18 Lawrence Afrin, who's the hematologist oncologist on the issue of histamine and other chemicals released by mast cells. 4:30 And so mast cell activation and overactivity of mast cells seems to be a significant factor in burning mouse syndrome for a number of people. 4:43 So let's talk about what mast sales are and how we approach treating somebody who we think might have mast-cell activation, 4:52 and we would go about treating it. 4:56 Mass cells are in many places in our bodies. 5:00 They are the interfaces of our body with the outside environment. 5:05 So what does that mean? 5:06 They line our mouths and our digestive tract because substances come from outside when we eat and out bodies have a very complex and sophisticated way 5:17 of determining if what we're taking in in the form of food or whatever comes in out mouth is safe for us. 5:23 Mass cells are part of that. 5:25 Mass cell line are respiratory passages. 5:28 They line the linings around our eyes. 5:33 So people who have environmental allergies, pollen, dander, activates mass cells. 5:41 And what do you know? 5:41 Your nose is running. 5:42 Your eyes are tearing. 5:44 You may have asthma and activation of your respiratory tract with contraction of the bronchioles, which is what asthma is. 5:55 And because the mast cells are in so many areas of our bodies, the symptoms of overactivity are hugely varied. 6:05 Mast cells even in our brain. 6:07 Mass cells in the fear center of the brain, so the kinds of symptoms that come from over activity of mast cell are really varied, 6:21 And it turns out that mast cells contain a thousand chemicals. 6:26 So they release histamine, what are called cytokines that you've heard of ever since the COVID pandemic, which are inflammatory chemicals,
Mast Cells and Their Role in Pain and Allergies 6:37 and they have been associated with allergic responses, They guide tissue development and growth, so they're not necessarily always a bad thing. 6:53 And they regulate a number of different processes in our bodies. 6:57 It turns out mast cells weren't, and the importance of them really wasn't recognized until pretty recently in the history of medicine, 7:04 which goes back thousands of years. 7:06 it's really been in last fifteen years that we've begun to understand so many conditions that we're puzzling that now we know are due to overactivity of 7:17 mast cells. 7:19 So there's a lot of things we can do to treat an overactive mast cell and even more than that, we want to try to figure out why these cells are over active 7:29 and in many cases we are able to So things that are signs of mast cell overactivity are everything from gastrointestinal disorders like abdominal pain 7:44 and bloating because of the over activity of mass cells in the colon and stomach, headaches, poor concentration and poor memory. 7:55 Other GI symptoms like diarrhea, nasal or eye symptoms, like the ones I mentioned, swelling, redness and tearing. 8:06 Interstitial cystitis, which is an overactivity of the bladder where you have to keep urinating with great frequency. 8:13 Small fiber neuropathy, Which is a nerve condition of certain fibers, the small fibers which we think play a role in burning mouth syndrome for some people. 8:26 Being intolerant to pharmaceutical medications can be a sign of over activity of mast cells. 8:34 Brain inflammation with brain fog can also come from overactivity of mast cells in the brain. 8:43 And we know that stress destabilizes mast cell in brain and so with the release of the chemicals from mast like histamine, 8:54 which is a pain producing chemical, we see associated pain conditions like trigeminal neuralgia. 9:02 And its furthest and most serious manifestation of mast cell activation is anaphylactic reactions, which is a very severe allergic reaction where your 9:17 bronchioles in the lungs constrict and becomes difficult to breathe, blood pressure plummets, And it is a life-threatening condition. 9:25 That is due to mast cells, and it can happen as a result. 9:28 You know, peanut allergies that are life threatening, that's an anaphylactic reaction. 9:33 Mast cells are involved in that. 9:37 So why might somebody have overactivity of their mast cell? 9:43 We're learning more and more about this. 9:45 For one thing, we're learning more about the importance of mold in our environment and water damage buildings and the mold that grows after a building 9:54 has become water damaged. 9:56 This obviously is going to become more and more significant with climate change and increased flooding. 10:02 So if you have water in your home, don't just pass it off as a nothing. 10:07 Within 48 hours of water, mold is starting to grow in the drywall in you walls and it needs to be attended to. 10:16 Viral infections, we think, can cause mast cell activation. 10:21 And we notice in a lot of our burning mouth patients, Epstein-Barr virus reactivation. 10:27 So, epstein bar virus is in the herpes virus family of viruses. 10:33 Most of us in the United States, by the time we're two years old, 90% of have been exposed to Epstein-Barr virus. 10:41 And usually it is dampened and contained by our immune system, if our system is healthy, and doesn't bother us. 10:53 for the most part, until possibly later on in life. 10:57 And it comes out as mononucleosis, which young people, teenagers, and college students tend to have. 11:04 It can show up later in live as reactivation and cause of fatigue and a number of other problems, including Burning Mouth Syndrome. 11:15 There are other viruses as well, and Lyme disease has been known to be Lyne infection and lyme co-infections are some of the causes of mast cell overactivity. 11:32 Toxins can also trigger mast cells. 11:36 So the toxins that are produced by mold, they're called mycotoxins. 11:41 They're volatile organic compounds. 11:45 that can make us very ill and in addition heavy metals like mercury can cause mast cell activation.
Causes and Signs of Mast Cell Overactivity 11:56 Some intestinal infections will increase histamine, like E. 12:01 coli in the intestine and some of the other issues of small bowel intestino overgrowth and small bow fungal over growth, 12:12 which cause a lot of GI symptoms, but at their root may have mast cell activation. 12:17 So you can treat the gut and treat that gut, But if you don't do something about the mast cells, the symptoms will continue. 12:27 So how do you know if you might have mast cell activation? 12:33 If you have a lot of seemingly unrelated symptoms, they may end up being unified in a diagnosis of mast cell activation. 12:43 So, you've have GI problems, diarrhea, environmental allergies, a dizziness when you stand up, intolerance to medications. 12:56 A regular dose of medications will completely throw you for a loop. 13:02 One of the cardinal signs of mast cell activation is called dermatographism. 13:09 That means writing on your skin. 13:13 One way to know if you have that is to take your forearm and make a scratch. 13:19 If that scratch turns pink, That is the result. 13:24 If it turns pink along the line where you scratched, those are mast cells getting activated, mast cell in your skin and releasing histamine, 13:32 which creates a small inflammation and turns your pink. 13:36 So that can be one of the ways that you know if you might have mast-cell activation. 13:43 The question is, how do we diagnose it and what do you do about it? 13:48 There is not one lab test that will tell you if you have mast cell activation. 13:54 There are tests that would tell if have the more severe manifestation called systemic mastocytosis, which is a very serious health condition. 14:05 And so doing a lab tests called a tryptase level. 14:11 It's done on blood, it's a serum tryptase. 14:14 If that's high, that can be an indication of a more severe condition called systemic mastocytosis. 14:22 And somebody who has that, you would definitely want to see a hematologist for treatment. 14:28 Most of the people that we see do not have that condition, but they have these myriad of other symptoms due to overactivation of their mast cells. 14:38 Not systemic mastocytosis, a lesser sign of lesser activation, nevertheless with many health problems resulting. 14:50 Burning mouth syndrome is one of things that can happen with mast cell overactivity. 14:56 So there are a few different protocols that we use to try to help with mast cell activation if we think somebody has it. 15:05 So if somebody had environmental allergies and they are sensitive to medication, signs like that and have dermatographism with their burning mouth syndrome, 15:17 I really go for treatment of mast-cell overactivity as one of the initial things that So two types of medications that we use. 15:29 One is a histamine type one blocker, which are the usual antihistamines for allergies that you're familiar with. 15:37 Things like Zyrtec and Allegra and Clarinex and Claretin. 15:42 The one that weave like the most is newer one called Zizol, also known as Levociturazine. 15:50 And Zizzol's available without a prescription at the pharmacy. 15:55 and it is a histamine type one blocker. 15:59 And so we have people start using Zizol, taking a half a tablet a day and eventually getting to a table a week over the next week if it's not sedating, 16:11 and then add to that a histogram type two blockers which are the ones that help with too much stomach acid. 16:18 So things like famotidine or pepsid which is the brand name. 16:23 And we have our patients start with a capsule a day, 40 milligrams. 16:28 And again, this is available without a prescription at the pharmacy. 16:32 Taking one a and if no side effects, after a while go to two a. 16:38 We combine that with a low histamine diet, because not only does our body release histamines, we get histamin in some of the foods that we eat. 16:51 And some foods actually have a lot of histimine in it, and some food are histomine activators, even though they don't have lot a of them. 17:00 So we try to have people on a general low-histamine-diet. 17:05 The guidelines for that are avoiding canned foods, ready-made meals. 17:11 As food sits, it tends to produce histamine. 17:17 Actually, as much as we like fermented foods for the probiotics in fermented food, fermented have a lot of histamine in them. 17:27 So things like older cheeses, kimchi, sauerkraut, those wonderful fermented that are great for so many people are not great if you have histamines problem. 17:41 don't allow foods to linger outside the refrigerator, especially meat products, they will develop histamine. 17:48 And so it means eating freshly made, freshly bought foods, things to avoid, and fresh fruits, fresh vegetables, egg yolks are good, 18:05 chicken, milk and milk products. 18:10 most leafy herbs, things to avoid because they have high histamine, alcohol, pickled or fermented foods like I said like sauerkraut,
Treatment Approaches for Mast Cell Activation 18:21 mature aged cheeses tend to have a lot of histamines, smoked meat products and preserved meat like salami, ham and sausages, 18:32 shellfish has a lots of Beans, unfortunately, chickpeas, soybeans, peanuts have a lot of histamine. 18:40 A number of nuts do, like walnuts and cashews. 18:44 And salty snacks and sweets that are made with preservatives and artificial colorings tend to be histamines activators. 18:55 So we have people avoid histamine-containing foods and histamines-releasing foods while being on antihistamins. 19:06 In addition to the two that I mentioned, xyzol and pepsid. 19:12 Sometimes people need to go further in terms of using antihistamines. 19:17 One of the things that we like to use a lot for burning mouth syndrome because it is a good anti-inflammatory and releases natural endorphins in our body, 19:29 which is our natural pain relievers, is called low-dose naltrexone. 19:34 And naltrexones seems to be especially good for what are called central pain syndromes, where the pain isn't just happening out at your tongue or in your lips, 19:44 it now lives in part of your brain. 19:47 That's what happens with chronic pain. 19:49 A lot of chronic pains becomes a central or brain problem, and low dose naldrexxone turns out to for those central pain syndromes. 19:59 Low-dose naltrexone has antihistamine action and we've had a lot of good luck with patients who are on our hormone program and then add low- dose naltrexon. 20:12 So if you are somebody that seems to have histamine problems, you may want to add low-dose naltrexone to the antihistamine zizol and the anti-histamine 20:26 for the gut pepsid. 20:28 There are also some other ones. 20:31 Singulair is something that lots of asthmatics take because it is a mast cell stabilizer. 20:36 In addition, something called ketotipin, which is a mast cell stabilizer. 20:46 It blocks H1 histamine. 20:49 it needs to be made in a compounding pharmacy because it's not commercially available. 20:56 And the other one is chromaline, which a lot of asthmatics are familiar with because they're on chromalin, because it blocks mast cell release of histamine 21:05 and some of the mast cells inflammatory chemicals. 21:08 So there are a lots of medications that are helpful. 21:12 There are lifestyle things like a low histamines diet. 21:16 Their are supplements that can help with histamin. 21:20 A lot of people are deficient in an enzyme called diamine oxidase. 21:26 It's abbreviated DAO or DAW. 21:30 it helps to break down and clear histamine. 21:33 So a lot, of times while someone is on a low histamines diet and using antihistamine, we recommend a DAL containing enzyme preparation and a number of 21:45 the supplement companies have enzymes preparations that contain diamine oxidase. 21:53 Wonderful natural antihistamines are quercetin, perilla, vitamin C, and some of the B vitamins, which we recommend being sure that you have adequate numbers 22:06 if you burning mouth syndrome, because B-vitamins are so important to proper nerve function. 22:11 B12, B1, pantothenic acid and B6, these are all important for healthy nerve functions, but also for clearance of histamine. 22:27 The other thing is if part of your histamine problem and histamine release is due to stress, it's really important to do activities that are stress reducing, 22:41 that will lower the amount of histamin getting released from like the amygdala, the fear center of the brain. 22:48 So things that helpful are massage, craniosacral treatment, taking a walk in nature, listening to binaural beats, which are recordings that have particular 23:02 wavelengths that are very brain calming. 23:12 And also things like lymphatic drainage and liver detoxes with preparations that have milk thistle or bitters. 23:22 Bitters are a very old fashioned way of activating and processing things well through the liver. 23:29 So all of these things may help with the processing of histamine that's produced from mast cells. 23:43 So that's to give you an overview of mast cell activation and especially how it has bearing on burning mouth syndrome in particular. 23:54 And let's see, we have some questions so I'm happy to look at the questions while I am sitting here and see if I can answer some of these. 24:02 Is a low histamine diet permanent or does the body eventually react less when a normal diet is introduced? 24:11 It really depends on if you've gotten to the underlying cause of why the mast cells are activated. 24:17 So if have a water damage mold situation in your home and have activation of your mast cell and histamine release, presumably as you repair your house
Questions, Practical Tips, and Closing 24:30 and you have remediation done and remove the mold, you will remove source of the activation your mass cells. 24:38 all of the treatment things that we do, like the medications and the supplements and low histamine diet, presumably when you do no longer have the trigger 24:48 for activation of mast cells, you would be able to reintroduce various high histamine foods. 24:55 The same thing goes for if Lyme is triggering your mast cell activation. 25:00 As the Lyne and co-infections are treated, presumably you would have less mast-cell activation and less need for a low histamines diet. 25:12 Let's see, another one. 25:13 When I was under high stress, my feet and hands burned when I went to bed and I noticed them burning as the day progressed. 25:21 I started B12 vitamins and the burning stopped. 25:24 So that's the perfect example that very well could have been mast cell activation. 25:29 And like I said, B vitamins, including B 12 help your body process the histamine. 25:37 That may have why the burn stopped with the use of B vitamin. 25:45 Let's see if we have any other questions. 25:48 And so it's toxic load, absolutely toxic burden plays a role in mast cell activation. 25:55 So we are always looking for where are the toxins coming from? 25:59 How can we remove the toxin from the environment? 26:02 how can remove toxins from your body? 26:07 So I hope this has been helpful for you in terms of understanding what's going on and when we talk about treatment for mast cell activation, 26:15 when were taking care of our burning mouth patients, or if you are not a patient at the Sklar Center and you're seeing your own doctor, 26:23 this is good information to take. 26:26 And especially it's helpful because a lot of this are things you can do on your own. 26:31 And so the antihistamines like xyzol and hepsid, the low histamine diet, these are all things that you could try on you own But if you are running into 26:43 problems and need lab testing or a discernment of could you have systemic mastocytosis, which is much more serious, then you would need to see a physician 26:53 and have lab-testing done and get a serum tryptase test done. 26:59 So hopefully we will be able to save this recording and to have it on our Instagram. 27:05 And also we'll post it to Facebook and YouTube. 27:09 for your future viewing. 27:11 So thank you so much for listening today and we will be back. 27:17 Bye now.
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