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for no particular reason today it just seems like a really good time to repost that post I made rounding up the research that says the MCAS antihistamine protocol appear to help for both COVID prevention and for avoiding long COVID if you get it synecdochic.dreamwidth.org/805203.html
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Because every time I repost this and it gets traction I regret it eventually, I shall now preemptively ward off the most common responses: 1) The links to the papers are in the post 2) Some countries don't have a H2 antihistamine available OTC: if you can't get one, the H1 alone does help somewhat
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3) That study linking Benadryl to lifetime dementia risk increase has some severe methodological flaws, ignores confounding variables, and still only shows a tiny absolute risk increase that's lower than the risk increase of COVID itself. Also, the protocol recommends cetirizine, not diphenhydramine
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4) No, your doctor isn't going to know anything about this, because doctors don't stay current on research and none of them understand a goddamn thing about MCAS, even half of the ones who claim to
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5) This does not replace the need to get vaccinated, wear a (K)N95 mask whenever you are in public, improve air filtration, use a nasal barrier spray (synecdochic.dreamwidth.org/800951.html ), etc. It is one small part of a defense-in-depth strategy.
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And one thing that's not a common objection but still useful to know: if you're one of the people who react badly to the COVID vaccine and have been avoiding getting a booster because of it, the research (again, linked in top post) suggests it's probably a mast cell reaction
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If you take 50mg Benadryl 15 minutes before the vaccine or 20mg cetirizine 2-3 hours before, you will feel less like shit and it doesn't reduce the vaccine effectiveness. If you get sleepy from that dose of diphenhydramine and drove to the appointment, go home right after and take it ASAP then.
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I was reading your tweets with interest, but this is where I hit follow
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I am incredibly lucky and have a thoughtful, committed doctor who tries to stay current as much as possible and I still have to be the one sending her all kinds of info. Even the best ones have an entire system working against them :(
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In case it's useful, in the UK it's trivially easy to get H2s (or metformin, for that matter) prescribed online and shipped to you. The NHS is ofc a mess due to criminal underfunding. I tell my docs what I'm up to and just say "privately prescribed" and they shrug and note it.
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Useful for people to know, thank you!
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Can I ask how you do that please? I split my time between France (where doctors for some reason consider H2s to be evil) and the UK and would like to stock up.
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Rather than recommend a specific pharmacy (as I'm an internet rando and you shouldn't trust me) I'll give a process. Google "buy Famotidine online UK" and you will get sponsored results. Click a few and check prices. Then check the site with trustpilot and look for excellent reviews. (Cont'd)
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The NHS crisis means there are a good number of reputable pharmacies selling low-risk medications online. Reminder that you will have to tick boxes saying you have heartburn or whatever. I disclose all to my GP and rheumatologist, so I'm personally fine fudging an online form. Hope that helps!
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Of course please please check drug interactions online with any existing meds if you are buying online before disclosing to your doc.
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Astepro is an H1 antagonist nasal spray available over the counter in America. I get bad side effects from most of the other H1 options
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Do you know if there are any H2 receptor antagonists that don’t lower stomach acid? Asking as I already have super low stomach acid and have to supplement just to digest food.
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Unfortunately, there are not! Just taking the H1 antihistamine is still somewhat protective, though.
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Anecdata, but. I can attest that I am taking an MCAS-y dose of H1s (cetirizine 2x daily, loratidine 1x daily) and For Various Reasons no H2, and I am pretty sure it's part of how I managed to fly to and from Missouri in January without catching another round of covid in the process.
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That’s good to know. And I’m glad you were able to stay safe on your flight!
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Bummer, but good to know the H1 antihistamines can help. I will keep on with those.
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(Also, check your drug interactions if you’re on medication. Mine don’t play well with Pepcid, for example, though Allegra etc. are fine.)
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Thanks for this! 💯 I read the page and the research papers then took them to my G.P. here in Aotearoa New Zealand. He is super switched on and had no issues writing the prescriptions (the H2 is script only here). I'm seeing steady improvement in my LC symptoms. GP is using it for others as well.
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The pharmacist on the other hand told me that cognitive behavioral therapy was good for treating long covid. 🤦
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...I just need ten minutes with your pharmacist. Never you mind that crowbar, it's my emotional support crowbar.
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I expect my partner and my faces would have said it all, but we were masked... I had to go back the next day, took a review paper, and had a long chat. The upshot of which is 'you cannot treat a physical pathology with CBT'. Explained how suggesting such is harmful to patients. It got through.
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Yeah, that's just fucking ridiculous.
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Oh FFS! I also seem to be having improvements form H2 antihistamines….and possible some other meds that I’m taking for something not related to LC 🙃
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@captcaffiend.bsky.social I think maybe we are both in 🌴y. Happy to have a chat about it. I can be reached directly on the community site.
Te Ara Paerangi Community Hub :: Homepagete-ara-paerangi.community
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Because it works *so* well with ME :(
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That's wonderful, wonderful news. I'm so glad it's helping.
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My husband had Covid three weeks ago and I followed this - never got Covid. He took Paxlovid and the antihistamines and had a relatively mild case. I’m a believer.
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Hooray! I'm glad his case was mild and that you didn't get it!
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I'm on MCAS meds anyway but still got it including some LongCovid (though the latter relatively mildly). Despite Paxlovid. But of course my N=1 doesn't prove or disprove anything.
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Yeah, the best research indicates that it moves the needle on overall risk by double digit percentage points but is not a perfect preventative. But every bit of moving the needle helps!
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Double digit percentage is definitely something!
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seriously debating just making a keyboard shortcut for linking to that. also, thank you for having posted it somewhere conveniently referenceable.
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This is helpful info and tracks with my experience managing MCAS plus a postviral condition. Pharmaceutical antihistamines trigger/worsen my POTS symptoms, but I work with a naturopath and we've found some other things that help. Thanks for the research links!
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Yeah, when the information started coming out from the medication review Sinai did of patients in the first terrible wave of 2020 and found famotidine was associated with lower risk of mortality and severe disease, my ears immediately perked up and I went "it's got mast cell involvement"
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And sure enough! I'm glad you've found stuff that works for you. In case the naturopathic solutions ever stop being effective enough: a lot of times it's people reacting to the inert ingredients and a good compounding pharmacy can really help
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I’m so glad you mentioned a good compounding pharmacy. I just discovered one three weeks ago thanks to my doctor! I wish more people knew of them, and here in the US, I wish more people could afford them.
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a friend sent me this recently and I’m giving it a shot, thank you. just getting over a bout of covid now
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I really hope you feel better soon with a complete recovery!
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thank you! I hope you don’t get weird internet woo energy from sharing research hahaha
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this bout has been very light but also nerve wracking because this summer I had a huge blood clot in my brachial artery, life/limb-threatening, emergency surgery, docs baffled, no obvious cause I can only assume previous Covid was a risk factor and idk what to do about that
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Oh no! It's so infuriating that this is happening so often :/