What a brilliant episode! Makes it very clear that psychiatrists should become the lead professional for treating MCAS. Treating MCAS needs drug regimes for physiological (POTS, Ehlers-Danlos, etc) and neuro-psychiatric symptoms and psychiatrists are uniquely positioned to do this. MCAS is a neuro-inflammatory disorder and the drugs used for treating neuro-psychiatric disorders are actually anti neuro-inflammatory drugs in their actions.
Your interview with Dr. Janet Settle was an answered prayer. My daughter was misdiagnosed for decades with mysterious hives and then Bipolar, before she found out in 2017 that she had autoimmune encephalitis, more specifically Rheumatic Fever with complications of Sydenham Chorea. Treated with antibiotics and high dose IVIG treatments with steroids..Later, she found out she had alpha gal and several other tick vector infections. This year, I found out about MCAS and have seen improvements with low histamine diet and antihistamines, I would love for her doctors to listen to this podcast. I will be sending a link to them.❤
Would love for you to speak about PMDD. I struggle so much in the TEN DAYS of my luteal phase. Severe mental health issues are the biggest issue. I began basically a microdose of testosterone cream regularly and estrogen pill microdose during the luteal. It has changed my life for the better. But I had two near death experiences in a row followed by 3 surgeries in 5 months. ever since then (June 2023) I have suffered from mcas symptoms. My question is: do I seriously have to give up the hormones? Is there any situation the hormones are not ruining our system? I will be so miserable without them. But if they’re triggering mcas I’m extra lost.
Interesting, re: quetiapine has antihistamine effect on mast cell! I did find a lot of allergy and anxiety symptomatic relief when I was prescribed a low dose (50mg) XR seroquel, which was not touched by any other standard newer anti-anxiety meds.
Yes please change the system. Docs need to keep studying. They don’t seem to know enough. I’ve been miss diagnosed for the last two years. I just got dx with alpha gal. I’m sure I’ve had it for a long time. When I came down with Covid it all went to hell really fast in a neuropsychiatric way.
I finally figured out that a Claritin makes my depression go away. Famotidine eases anxiety. I spent so many years being gaslighted by doctors but I knew there was a physical cause.
Has anyone started to question the use of benzodiazepines as mast cell stabilizing meds. Has anyone ever liked at the time of benzodiazepines causing mcad? How many mcad patients end up with MCS and Dysautonomia - due to being in tolerance of the benzo they are using and using as directed? There is a serious issue going on. An entire new group of patients that were prescribed benzoes for other conditions , and try to come off the med and develop severe histamine reactions and MCAD . The said patient finds a doctor and they follow the Afrin protocol, then what? There is a serious issues with the use of benzoes. I have reached out to prominent men wrs in the mast cell community and it is ignored. I developed mcad and MCS after a few years of taking Diazepam for vertigo. I'm 18 months into coming off of this med. Just trying to understand how this can be ores rived with conscience. Informed consent is so desperately needed.
Benzos didn’t cause my huge mast cell flare but they sure made it worse. I didn’t sleep right for ten years, and I was only on a low dose for five weeks while I dealt with two kidney stone surgeries. So many awful, awful withdrawal symptoms. Now the only drugs I can tolerate at all are antihistamines, except for Benadryl. My nervous system is so sensitive, my whole life revolves around trying to keep it calm.
I swear I developed ADHD symptoms after becoming sensitive to everything. All my ADHD friends say they recognize the symptoms in me. A psychiatrist said I couldnt have had adhd because I didnt have it as a child. But I feel the distractiins, etc...yet there is no way to help eliminate symptoms like the ADHDers get to help them focus. Dr Leonard Weinstock thinks managing mast cells helps eliminate the mental health disorders...but i would say that ppl who feel better physically ...their mental health will improve but I am not sure if the disorders actually go away. There definitely is an anxiety component that develops when there might be a trigger around every corner. And the more triggers we react to..the more anxious we tend to get because you are now looking for it again. But this anxiety ramps up our stress levels which ends up with a furious loop. Weinstock has a questionnaire and it seems to help drs to see quickly their symptoms. In the fb mcas groups, there is a huge issue with suicide ideas because they cant figure out how to manage it...and no dr to diagnose.
ME/CFS, Long Covid and Chronic Lyme disease is also linked to MCAS. There are also two other mast cell diseases that can cause many of the same symptoms. Systemic Mastocytosis which is very rare and Hereditary alpha tryptasemia syndrome which is common.
What a brilliant episode! Makes it very clear that psychiatrists should become the lead professional for treating MCAS. Treating MCAS needs drug regimes for physiological (POTS, Ehlers-Danlos, etc) and neuro-psychiatric symptoms and psychiatrists are uniquely positioned to do this. MCAS is a neuro-inflammatory disorder and the drugs used for treating neuro-psychiatric disorders are actually anti neuro-inflammatory drugs in their actions.
Your interview with Dr. Janet Settle was an answered prayer. My daughter was misdiagnosed for decades with mysterious hives and then Bipolar, before she found out in 2017 that she had autoimmune encephalitis, more specifically Rheumatic Fever with complications of Sydenham Chorea. Treated with antibiotics and high dose IVIG treatments with steroids..Later, she found out she had alpha gal and several other tick vector infections. This year, I found out about MCAS and have seen improvements with low histamine diet and antihistamines, I would love for her doctors to listen to this podcast. I will be sending a link to them.❤
Would love for you to speak about PMDD. I struggle so much in the TEN DAYS of my luteal phase. Severe mental health issues are the biggest issue.
I began basically a microdose of testosterone cream regularly and estrogen pill microdose during the luteal. It has changed my life for the better. But I had two near death experiences in a row followed by 3 surgeries in 5 months. ever since then (June 2023) I have suffered from mcas symptoms.
My question is: do I seriously have to give up the hormones? Is there any situation the hormones are not ruining our system? I will be so miserable without them. But if they’re triggering mcas I’m extra lost.
Interesting, re: quetiapine has antihistamine effect on mast cell! I did find a lot of allergy and anxiety symptomatic relief when I was prescribed a low dose (50mg) XR seroquel, which was not touched by any other standard newer anti-anxiety meds.
Yes please change the system. Docs need to keep studying. They don’t seem to know enough. I’ve been miss diagnosed for the last two years. I just got dx with alpha gal. I’m sure I’ve had it for a long time. When I came down with Covid it all went to hell really fast in a neuropsychiatric way.
I finally figured out that a Claritin makes my depression go away. Famotidine eases anxiety. I spent so many years being gaslighted by doctors but I knew there was a physical cause.
Has anyone started to question the use of benzodiazepines as mast cell stabilizing meds. Has anyone ever liked at the time of benzodiazepines causing mcad? How many mcad patients end up with MCS and Dysautonomia - due to being in tolerance of the benzo they are using and using as directed? There is a serious issue going on. An entire new group of patients that were prescribed benzoes for other conditions , and try to come off the med and develop severe histamine reactions and MCAD . The said patient finds a doctor and they follow the Afrin protocol, then what?
There is a serious issues with the use of benzoes. I have reached out to prominent men wrs in the mast cell community and it is ignored.
I developed mcad and MCS after a few years of taking Diazepam for vertigo. I'm 18 months into coming off of this med. Just trying to understand how this can be ores rived with conscience. Informed consent is so desperately needed.
Benzos didn’t cause my huge mast cell flare but they sure made it worse. I didn’t sleep right for ten years, and I was only on a low dose for five weeks while I dealt with two kidney stone surgeries. So many awful, awful withdrawal symptoms. Now the only drugs I can tolerate at all are antihistamines, except for Benadryl. My nervous system is so sensitive, my whole life revolves around trying to keep it calm.
I swear I developed ADHD symptoms after becoming sensitive to everything. All my ADHD friends say they recognize the symptoms in me. A psychiatrist said I couldnt have had adhd because I didnt have it as a child. But I feel the distractiins, etc...yet there is no way to help eliminate symptoms like the ADHDers get to help them focus. Dr Leonard Weinstock thinks managing mast cells helps eliminate the mental health disorders...but i would say that ppl who feel better physically ...their mental health will improve but I am not sure if the disorders actually go away. There definitely is an anxiety component that develops when there might be a trigger around every corner. And the more triggers we react to..the more anxious we tend to get because you are now looking for it again. But this anxiety ramps up our stress levels which ends up with a furious loop.
Weinstock has a questionnaire and it seems to help drs to see quickly their symptoms. In the fb mcas groups, there is a huge issue with suicide ideas because they cant figure out how to manage it...and no dr to diagnose.
ME/CFS, Long Covid and Chronic Lyme disease is also linked to MCAS.
There are also two other mast cell diseases that can cause many of the same symptoms. Systemic Mastocytosis which is very rare and Hereditary alpha tryptasemia syndrome which is common.
I also think about this in the context of autistic aggression
Thanks
Much appreciated.
Thank you🙏🏻
I was seeing that Prozac has anti inflammatory effects. Is that true? Risperidone?
Davis Matthew White Mark Lee Karen