Gastroenterologist Dr Leonard Weinstock - 11th March 2020 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.
Linda Elsegood: Today, I'd like to welcome my guest, Dr Leonard Weinstock. He's a gastroenterologist from Missouri. Thank you for joining us today.
Dr Leonard Weinstock: You’re welcome.
Linda Elsegood: I think you're going to explain to us about mast cell activation syndrome, and you were telling me that it's quite an epidemic now.
Dr Leonard Weinstock: The damage means a couple of different things. One of them is an epidemic that more people are being recognized with this disorder. I've actually spent a fair amount of time describing it in the chapter that I wrote for the second LDN book. And I think it's actually the first time that this subject has been in a book with a discussion of LDN. , I can tell you that for a fact. It's made an enormous change in my practice.
Linda Elsegood: So how does somebody know if they have mast cell activation syndrome? What are the symptoms?
Dr Leonard Weinstock: Well, it's a disorder of poorly controlled, hyperactive mast cells, which are one of the white blood cells in our body that causes symptoms in numerous parts of their body. This cell normally orchestrates good immune function and orchestrates how things heal. A normal blood vessel supply to deal with a burn or trauma event, or a broken bone. These things that come out of the bone marrow normally, and go to the sites where there's inflammation.
And then it basically becomes the conductor of the orchestra to say, okay, you guys do this. You guys do that. And all the immune cells and chemicals behave in the correct manner for the body to heal itself.
But when the mast cell STEM cell in the bone marrow develops a genetic change, which then becomes permanent every time it activates the little mass cells that come from this and go out into the body, whether it be the gut, the skin, the nose or bladder, the vagina, the prostate, and then take up residence. It will result in a problem also, and the fat of body fat too. that look. It then creates a problem by releasing up to 200 chemicals or more, anytime it wants to, or activates because of a variety of triggers. that could include the food that we eat, the common ones being gluten, dairy, and histamine foods, including tea, coffee, chocolate, sardines, cold cuts including processed meats. So these things can activate mast cells. There are a variety of triggers that occur during a person's life that will activate, and I'll just talk about that in a minute, but I do want to say that this is a congenital disorder.
You inherit some abnormalities to some of the STEM cells in your bone marrow from your mother or father. Often there's a family history in these patients who have diseases and syndromes that nobody's ever been able to explain. So the mother of my patient may have fibromyalgia or chronic migraine. Or be the sickly person in general throughout their whole life going for decades and decades. And what happens is the baby picks up that genetic abnormality, a variety of things that occur in those cells. And then you start having some active symptoms as the baby. And that includes colic.
And this is a condition that's so common, but totally unrecognized by paediatricians that this could be an explanation for the colic and food sensitivity, rashes, eczema, migraine headaches, constipation, sensitive gut. As one patient just told me the other day, they always had a sensitive gut, irritable bowel syndrome. Again, the syndrome. I hate that word because it is something that is quite idiopathic. The doctors don't know what's causing it, but we really need to think a lot harder.
And patients as young kids had a sensitivity to mosquito bites, they can have a big reaction and develop severe asthma or allergies, which then can go away. It may be at that point that there's some increase in the activity of the mast cells, STEM cells for some reason. But when a person reaches puberty, often things get worse with hormonal triggers. And these are the people who complain of severe menstrual periods, taking them out of school, severe cramps, severe bleeding. And others reported use of Benadryl or diphenhydramine, or suppositories to reduce this, with marked improvement in activation syndrome patients. And then during the teenage years, there's a lot of stress. Stress activates mast cell activation syndrome. Maybe that's a contributing factor to acne as a teen. Then as we go into adulthood, there are a lot of consequences of stress, the inflammatory stress of pregnancy, which can activate Mass Cell activation syndrome. Other conditions such as reaction to our immune changes to vaccines can play a role.
I have patients who are remarkably sensitive to heat. One woman goes out in the hot temperature of Missouri, and her temperature goes to 103, and her face gets red and puffy and swollen. She literally rolled into my exam room in a wheelchair and with the use of low dose naltrexone and other simple medications walked in the next time she came in.
And that was really a hard read but a gratifying situation for me to say, she's made significant improvements. I do utilize LDN, a number of my associates, who are in different parts of the country use LDN as one of the first steps in treating this condition. The condition is normally treated by the use of antihistamines. You want to also use vitamins C and D, which stabilize the mast cell. It's important to cover your levels and try to get up to a high level, which is therefore anti-inflammatory, you know, so you want to use the sustained-release form of vitamin C.
There's less acidity by taking that. And also you don't get dips in your blood levels. And so the pain level is also important. The level of low dose naltrexone. I generally start with one new program and work my way up in terms of diagnosing somebody with this disorder, they have to have two or more classic mast cell activation symptoms.
And that could be simply irritable bowel syndrome. And stuffy nose. I have patients who have had limited symptoms like that, and they reverse and turn around just with simple over the counter therapy, LDN. But those who are more effective, and there are plenty of my patients in that regard, do well with LDN.
And, uh, if you buy the book, in my chapter you will see my outcomes data on patients who are treated with LDN. And it's dramatic in some patients, especially some things like brain fog, which is so common. People can remember words or abilities to work. Some cells are really destroyed, another neuropsychiatric problem with mast cell disease. There's going to be so many things that affect the body, including the brain. I'll go into that in a bit and tell you about a few cases, but I do want to finalize things about the diagnosis. We do like to get the chemical analysis, the mediator tests that help prove that somebody has mast cell activation syndrome.
So that would include their heparin level, which is unfortunately only available in some labs to be done in the ideal ultra sensitive way. That would be 60%, but the fact is, in the United States, there's only one lab that I know of that does this correctly. And in Germany a lab that does it correctly as well.
The histamine level is positive, and about 15% to 20% tryptase level, which is widely misunderstood by allergists who deal with this condition or other doctors who think they're dealing with AMCAS correctly, and they say, Oh, the tryptase is normal. That excludes it. Well, the fact is they're wrong. 85% of AMCAS patients will have normal tryptase levels. And there are three urine tests that can be run. Some people also believe that if you repeat the tryptase level during an attack, a significant elevation could be significant. The data to support that is not in the literature and this is a problem because following this guideline could result in getting underdiagnosed and therefore, undertreated.
So I am investigating a number of conditions that are associated with Mass Cell activation syndrome. And just recently found that 40% of my patients add restless leg syndrome, 60% had ringing of the ears, and. 30% had small intestinal bacterial overgrowth. Bloating is a very common symptom of AMCAS, and therefore bloating especially immediately spontaneously is likely due to the effect of the mast cell, chemicals as opposed to small intestinal bacterial overgrowth or SIBO. This is an epidemic if you will. The range and estimates are 1% for the United States, and 17% of the German population has been estimated to have mast cell activation syndrome. So something's going on with our genes that allow these changes to occur early in life. Whether it's a methylation problem or there's radiation, I don't know.
But I think all these things need to be explored. I have patients who got a lot worse when they moved into a new home, and the entire block had radon in their basements and they all had to get fixed. And radon is a naturally occurring nuclear material. So I think a lot of work needs to be done. We need to live on a healthier planet. And God willing that will take place and pray for and do whatever you can to help. Thank you, Linda.
Linda Elsegood: Oh, thank you. Wow. That's a lot of information there. So if somebody is concerned thinking they have mast cell activation syndrome. How easy is it to find a knowledgeable doctor who would know about these tests you were talking about?
Dr Leonard Weinstock: The answer is very difficult. Now, you introduced me to a doctor in England, who's interested in expanding her functional medicine. I'll be talking to her in a few hours. This has got to start in medical school because otherwise, this is going to take 20, 30 years and think about all the suffering that goes on. There's a minority of people. We have a study group that has 160 doctors. It's grown from 30 doctors in a matter of two years to 160 doctors who are actively engaged with studying AMCAS, sharing difficult cases, getting ideas, and it's been a wealth of information.
It takes doctors a very long time to learn anything new. Only if there's a drug that comes out, which is then FDA approved or approved by the EU for a particular disease because it actually has the potential of getting out there either through articles or believe it or not, drug representatives who are then able to come in, advertise the drug, advertise the disease or syndrome. But even that takes a long time. And since 2015, we have two drugs that were FDA approved. And many of the GI doctors and primary care doctors don't know about it or understand it. And again, it wasn't taught in medical school, so it wasn't taught in your residency. And many doctors are afraid to learn anything new just because they're overwhelmed by other things, and it's a problem.
Linda Elsegood: As you can perhaps remember when you suggested I have had a SIBO test, how impossible it was for me to try and organize that. And I was thinking while you were talking, I really wouldn't know in England how we would go about having these tests. But if you're going to be talking to this doctor later, maybe she will take it on board and learn about it.
Dr Leonard Weinstock: Theoretically the allergists know about it. It limits your allergist theoretically in the UK or elsewhere to know about mast cell activation syndrome. One of the problems in politics. Once you make the diagnosis, then everybody, their GP wants you to manage the patient. Now, these patients can have 48 different symptoms and in 11 different parts of the body and there is a lot to handle. They take more time once you tell the patient, okay, I believe everything you say, and I believe that everything is due to one little cell in your body.
Then, the patient is validated; finally, they don't feel crazy. And honestly, that's a big thing. The doctor who diagnosed this, winds up being the treating physician and spending a lot of time, emails, phone calls, et cetera. And so a lot of the doctors who are on our Internet study group, or actually what we call private or concierge type doctors who can spend an hour, hour and a half with the patient and an insurance model that works, especially your model that you have in the United Kingdom. That's hard to do, if not impossible.
Linda Elsegood: Well it wouldn’t fit in 10 minutes, would it?
Dr Leonard Weinstock: No. That's the problem.
Linda Elsegood: If you manage to find somebody who would diagnose you, give you the tests, what is the treatment? I know you said about LDN and cutting out all the things in your body, in your diet.
Dr Leonard Weinstock: I've got something online that they can look at, that goes to educate, diagnosis, basic treatment by the basic steps. One, two, three, four, diet. Symptoms specifically that many of those are prescriptions, but not all. So on my website, G I go after diets, a GI doc, They can type in the search area mast cell and see Mary’s approach, see some of the PowerPoints that are given. For me, as a gastroenterologist, this has been nothing but a game-changer. A game-changer because it helps me diagnose all the difficult patients that had been dumped. The routine gastroenterologists told them that they're crazy, or just given up and they wind up seeing three or four more and don't get answers. They get colonoscopy twice or three times and biopsies, but you're not going to see the cells. And if you don't test their blood in this special way, you'll never get the answer.
RESTART HERE So for me, this is a real market for both than out of that remarkable and makes me feel good because I can take the most dramatic case, which was dope, which was yesterday, where I have a patient that's severely affected, very severely affected, but she's getting better with aggressive medical therapy.
Mmm. But then I decided to ask her about her family history. And it wasn't quite clear. Yeah. Her mother was affected by, uh, some problems. Um, and I said, well, what about your children's to the big problem? And she became weepy, and she said, well, my daughter's had psychological problems all over life. And then she was 16.
She blamed me for this and that, and moved out of my house at 16 and cut me off from her life. Wound up moving in with the grandmother. And I said this could easily be neuropsychiatric disorder related to AMCAS. And if you Google, um, AMCAS and neuropsychiatric disease, you'll come up with dr and dr moulder and, um, report talking about all the disorders, including depression, anxiety, panic attacks.
Or even schizophrenia, things. They are caused by chemicals and not by nature, but nature, not by nurture issues. And I said, you know, um, to, um, Mr G, I said, you know, you gotta take this paper to your daughter, you've got to take this, uh, questionnaire. And I believe the questionnaire is on my website, the M C M R S questionnaire.
And take that and give it to your daughter and say, you know, it's not me. It's my genes that you received, and this could get better with simple medication. And I told her about a 17-year-old woman that I saw. Who has panic attacks and their eyes would glaze over, and she could be trusted panic attacks.
She had to stay home from high school for a year to try to get herself in line. The mom saw me he is diagnosed with, and she said as pleaded could see her daughter who had panic attacks cause she read about panic attack in the literature I gave her. And I saw her very nice person and not a lot of systemic symptoms that she would admit to, but she had this, uh, severe nature of, um, being nervous.
And, uh, so I gave her naltrexone. I gave her anti-histamines. I had her come back for a follow-up. Her blood tests were actually negative for AMCAS, but that doesn't rule it out. Good. 25 to 50% of people are going to have negative blood tests. And she came back in, and she was a new young lady. I mean, she was confident.
She was smiling. I mean, it was amazing. And, uh, she was so happy, so thrilled she was going back to school and going into college the next year. And things went great until college when she had a terrible diet, couldn't keep, uh, gluten-free. And, uh, so she came in, uh, at Christmas time and we talked about how she needed to modify our diets and tricks since that was the main cause.
For her slipping. So we had to look for triggers. But I mean, that's one of the greatest feeling things that I've done in 35 years of being a physician. Hmm.
Linda Elsegood: That's a great story. You did actually have a request for people. Um, if they had a terminal pain, would you like to, to tell us who you would like to contact you.
Dr Leonard Weinstock: Yes. Um, so I'm doing a research project, um, trying to identify people with chronic abdominal pain who have had cat scans of their abdomen and been diagnosed with one of three conditions, mesenteric and they kill itis inflammation of the fed. Blue roasting, which is some information and, and contraction of the mesentery of the abdomen to the connective tissue that holds everything in place or the most serious, uh.
Uh, of the three related conditions, namely, um, rec retract tile, Mez introitus where everything moves and pulls in and fibrosis and scars down. So I'm looking for patients who have that, uh, diagnosed by x-ray and have been treated with the LDN for, you know, a variety of things. And, and that found and found relief.
Of their, uh, abdominal pain. So if you got that, uh, you can write to me at LW, at GI doctor.net similar to my website, LW, my initials at GI doc, T O R. dot net. That's specifically looking for patients, uh, who have had benefit with LDN for their abdominal pain and had one of those three conditions. Mesentery connect your riotous sclerosing, uh, medicine traits, and we'll track Tao lets him try this.
And this is basically something that, um, is per survey as opposed to coming to Missouri and seeing me. It's really for a survey. And then, um. Uh, you know, I think that some of these patients are going to be like, two of the patients that I've got in our practice that, um, are related to mast cell activation syndrome.
Linda Elsegood: Well, you're absolutely fine. You'll just like 30 seconds off the end of this show. So well done you, and thank you very much for educating us today, and I do hope people will contact you.
Dr Leonard Weinstock: My pleasure. Have a good day.
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