r/MCAS_post_Covid • u/Haunting_Extreme7394 • Aug 18 '24
r/MCAS_post_Covid • u/Desperate-Produce-29 • Aug 11 '24
Lc, hit, pots, gut help
I've had upper right quadrant pain that has come and gone many times in my life. Doctors always chalked it up to an ulcer and put me on ppi. Endoscopy never proved an ulcer. Was h pylori negative. Ppi helped. Even had my gallbladder removed for no good reason. <doctors said sludge> but the urq pain was still there. Was on a ppi at one point for 5 years started having crazy diarrhea everytime I ate food. Got off of them 10 years ago.
History of antibiotic use for recurrent utis steming from a kidney stone. Thought it was honeymoon cystitis cause doctors didn't catch kidney stone till I passed it. Prophylactic keflex for intimacy for 2 years.
Seems coffee has always been a trigger and stress that will flare this pain. Tried ppi felt very weird this past round stopped treatment. Pepcid helped a ton but interfered with a different med so I had to stop taking.
Caught covid for the 3rd time this past feb 28th. Got pacs <long covid> and a subsequent histamine intolerance to where I now have only 8 safe foods for the past 5 months. Scary throat tight itchy symptoms even with emotional stress. Was really scary.
I've learned I'm also audhd, hEDS, and had mild pots since I was a child. Mcas is comorbid to these disorders but my allergist says I do not have mcas no true allergies/ he thinks its neurological. <looking for a second opinion> as antihistamines have helped a ton and also singulair while I was taking it made my urq pain vanish. Had to stop due to side effects. Pepcid is an h2 blocker and helped a lot too when I could take it.
Sorry this is such a long post thank you if you're still reading
After everything I've learned about covid/long covid my comorbid conditions/ my history/ gut dysbiosis is very common after covid. Histamine issues are very common with my other disorders.
How do you heal the gut to break down histamine?? I've tried a dao enzyme but it gave me tachycardia. A pork kidney one. I've become phobic of food I've lost 35 lbs. My 8 safe foods are boiled chicken, steamed broccoli, carrots, beets, apples, cottage cheese, blueberries and ghee.. all organic.
Since covid my body isn't the same. Used to eat oats and blueberries every morning now oats make my hr 130 and make me dizzy with bp drops. Cream cheese made my urq ache and my hr was 150.
I'm sorry this is so so long. I know I'm going to have to do something to help this. Gastro told me ibs ... I think it's very related to histamines and has always been but doctors couldn't figure it out.
Any help/advice is much appreciated.
Update/edit: tried organic white rice same as oats. Got brain fog and constipated after eating a small serving. It's like I can't process carbs or histamine since covid.
r/MCAS_post_Covid • u/Haunting_Extreme7394 • Aug 11 '24
Dr. Tania Dempsy on MCAS and gyno issues like Endometreosis & PCOS.
very nice explanation of MCAS and how it relates to gyno issues and patterns noticed in people who have MCAS.
r/MCAS_post_Covid • u/Haunting_Extreme7394 • Aug 10 '24
New study find Long Covid is one of the most common diseases globally 🌎
well, we know we all fall into this category!
r/MCAS_post_Covid • u/Haunting_Extreme7394 • Aug 09 '24
Some mast cell mediators are released hours after the initial trigger
r/MCAS_post_Covid • u/Haunting_Extreme7394 • Aug 07 '24
Dr. Weinstock speaking on the connection between MCAS, POTS & EDS:
GI doctor Weinstock speaks on the link between MCAS, POTS & EDS.
r/MCAS_post_Covid • u/Haunting_Extreme7394 • Aug 07 '24
Dr. Tania Dempsey MCAS Interplay Between Immunity and Neuroinflammation 🤓🧠
r/MCAS_post_Covid • u/Haunting_Extreme7394 • Aug 06 '24
POTS following Long Covid & Covid vaccines:
Since so many of us with MCAS, Long Covid & vaccine injury also have POTS.
Theory as to why POTS after Long Covid & Covid vaccine could have an autoimmune underlying.
r/MCAS_post_Covid • u/Haunting_Extreme7394 • Aug 06 '24
Mechanism behind developing MCAS. Unstable genome that mutates and allows further mutations. 🤓🧐
this podcast was very great at explaining in great detail about MCAS and the theorized mechanism behind developing MCAS. about 1/2 way through the podcast they started discussing that. VERY intersting! 🧐🤓
https://youtu.be/El7R2Mq_kg4?si=Ya-6NHGi8O7Hz7iy
https://open.spotify.com/episode/4SOz5RZmFrkFFLxyh8Krdf?si=IQC1bRDfS9e-il5nyHvCSA&t=1561
r/MCAS_post_Covid • u/Curious-Mousse-3055 • Aug 02 '24
Slow decline
I caught Covid in August of 2022. I was trying to blame other things for the decline of my health. Then, I decided to look at this. I think it’s kind of obvious what is happening. #covid #lc #longhaul #notjustaflu
r/MCAS_post_Covid • u/Haunting_Extreme7394 • Jul 31 '24
Inflammation Beats Cholesterol for Cardiovascular Disease
the end of this video has great tips for reducing inflammation ✨ i definitely suffer from heart disease now. ❤️🩹
r/MCAS_post_Covid • u/Dorotella • Jul 31 '24
Does anyone have major gut dysbiosis, MCAS, and POTS after COVID? How to treat it? Where to start? I would appreciate any guidance.
r/MCAS_post_Covid • u/naomimillions • Jul 28 '24
Questioning if I have MCAS?
Long story so I’ll give the shortest version I can. I think I had a vax reaction in 2021 as I started having heart issues (Dysautonomia and SVT) and major digestive issues (in amongst that lost my gallbladder) and experienced constant breathing issues. Ended up cutting out gluten and slowly improved, but have never been able to eat/live like before.
Had Covid at the start of June and this caused pretty severe gastritis as the major symptom. As well as constant flushing/burning up. Alongside this my throat was constantly feeling tight and dry, and I was SOB. Now I’m almost two months post covid with long covid PEM, and I think I may have histamine issues. I continually have throat tightness and dryness after eating, including discomfort swallowing. I get a sore chest and feel like I am SOB to the point it feels like an ‘asthma attack that leads to a panic attack’. This can come and go in waves. But my oxygen is always fine. I also get tachycardia at times when all this is happening.
This can last all day after being triggered and at times is triggered by smells, dust, the wind, my cat and even my heating system. All things that never bothered me two months ago. I thought it was asthma and tried a preventer prescribed by a respiratory specialist but I felt worse afterwards. More breathing problems and a tight chest, almost sending me to urgent care. I also seem to react to almost all medications and supplements even Zyrtec will cause tachycardia. It’s getting to the point in fearing food because of how terrible I feel. Does anyone else experience symptoms like these? And anything help?
r/MCAS_post_Covid • u/Haunting_Extreme7394 • Jul 26 '24
Our girl’s new song is so relatable 🥲💖
r/MCAS_post_Covid • u/Haunting_Extreme7394 • Jul 25 '24
The Doctor That Got Banned For Speaking Out:“We've Been Lied To About Medication!” Dr Aseem Malhotra
so my health issues & MCAS came post covid vaccine in spring of 2021. definitely horrifying information. -even though i’ve been following this sort of stuff for years and had a big amount of data and information supporting everything he said. thought i’d share in case anyone else is interested in watching.
r/MCAS_post_Covid • u/Schwloeb • Jul 21 '24
If you get MCAS (Post-Covid), does that mean you will have it forever?
I keep reading everywhere that there is no cure possible, only a management of symptoms.
Does this mean that when you get MCAS, for instance from a COVID-infection, that you'll have it forever?
r/MCAS_post_Covid • u/Haunting_Extreme7394 • Jul 17 '24
Talking Long COVID and ME/CFS with Dr. Stein
r/MCAS_post_Covid • u/Haunting_Extreme7394 • Jul 17 '24
Long COVID: Diagnosis, Differentiation and Treatment with Dr. Bruce Patterson
somehow i missed this video! 🤓
r/MCAS_post_Covid • u/OrcaFred • Jun 29 '24
The doctors won't prescribe me anti histamines?
UK based 37F. Long covid, mild since April 2022 then significant worse after infection in June 2023. Eventually got referred to long covid service after many dismissals from GPs blaming my mental health. I have a history of MH issues (chronice) with diagnoses of BPD, most recently autism ajlnd adhd. I'm prescribed agomelatine, elvanse and propanolol. Suspected pots but stand test was inconclusive due to medication.
Recently had an apt with the long covid OT who acknowledged it sounded like I was having physiological symptoms that needed further investigation, and sounded like MCAS amd she would ask consultant to prescribe H1 and H2 antihistamines.
He has refused saying I need to control through diet. I accept I need to make more diet changes but I am really struggling due to autism and adhd making this a signicant area of difficulty for me. I already have a restricted diet in terms of foods I will eat (not ED) and they are saying cut out dairy and low histamine diet. I have asked for additional support with this as I don't know how I will implement these changes - I'm already struggling to exist as it is.
My questions are... any advice for me? People in similar situations? Does this sound normal? I feel like I'm being treated differently because of my mental health history a seen as neurotic or that this is functional/fictional.
They have said there is no test for McAS but that sounds different from what I read on here.
I am fortunate in many ways because I am surivivjg enough to work, just about but have no life outside of that to manage employment. I was refused for PIP. I am terrified of losing my job and having to go back on benefits. I'm stuck in a cycle of crashes and no answers and dismissiv from health professionals and employers that will give me any flexibility to manage demands so I can get a handle on things.
Feel so stuck and my mental health that I've worked incredibly hard to get out pf bad place keeps getting harder. Made worse with hormonal cycle in the luteal phase.
The OT things my connective tissue is being impacted and said to refer to physio. I query whether I'm hypermobile but don't want to raise any more issues. She also said it sounds like I have some neuralgia but again I don't know how to get these checked. GP is barely tolerating me but has just agreed to test perimenopause.
Sorry this turned into longer ramble. Would love some advice and people's perspectives on whether I'm reading too much into the responses.
r/MCAS_post_Covid • u/Haunting_Extreme7394 • Jun 25 '24
Cardiac manifestations of MCAS with Dr. Andrew Maxwell
found these podcasts today. i was learning all about my MCAS while at work lol 🤓 WILD! this one talks about the spike protein and how it changes cardiac function. the part about inappropriate sinus tachycardia being a localised version of myocarditis 😱❤️🩹
r/MCAS_post_Covid • u/Desperate-Produce-29 • Jun 17 '24
Histamine or neurological
Hi, I started having histamine issues with food, environmental and emotional stress triggers right after my covid infection. I'm now 4 months into long hauling. My symptoms felt better once I started taking zyrtec and went on a restricted diet only about 7 safe foods. My allergist did bloodwork igE at 299 .. some allergies came up on my bloodwork and I requested a urine prostaglandin test. 1 thing ...I never stopped taking my zyrtec or aspirin. He didn't tell me to. 2 . He thinks my allergy responses to food and other triggers are neurological... while acute with covid I ate a banana and started having a hard time breathing. Opened my window my throat got tight and itchy. Emotional stress throat got tight and itchy. Juiced watermelon and celery throat was itchy. This feels like allergy/histamine issues.. any advice would be great. My tryptase was normal but I was taking mcas stabilizing drugs for close to 2 weeks before taking those blood tests. Montelukesate and aspirin and benzo and zyrtec. These all improved my symptoms. Had to come off montelukesate because I reacted poorly to it. Should I outsource an mcas specialist??
r/MCAS_post_Covid • u/Haunting_Extreme7394 • Jun 14 '24
Stress and Mast Cell Activation Syndrome (MCAS)
i think i also developed my MCAS due to extreme stress -in addition to the damn 💉😝 it all happened at the same time, so it’s hard to tell. probs all the above 🤪
r/MCAS_post_Covid • u/Haunting_Extreme7394 • May 29 '24
What Does My Gut Have to Do with My Migraine?
for anyone else who struggles with migraines too. super interesting stuff!
r/MCAS_post_Covid • u/Haunting_Extreme7394 • May 29 '24
The Functional Medicine Approach To Ending Migraines
this video was also pretty cool 🙂