This week CDC has modified how they link numeric COVID wastewater data to descriptive levels (e.g., Low) in ways that generally describe transmission as one category lower than their previous system

Just FYI — go to the links to see the explanatory video — I am not personally involved with this website, just sharing this — but I can testify that CDC did make this change:

https://pmc19.com/

August 17, 2026 - Report

"Alert: This week, the CDC has modified how they link numeric wastewater data to descriptive levels (e.g., Low) in ways that generally describe transmission as one category lower than their previous system (e.g., Low is now "Very Low"). We have made a brief video explainer. Note that all PMC data use the pre-August 14 system, unless otherwise noted. 

Bluewashing: How the CDC Makes COVID Levels Appear Artificially Low (An Ethics Crisis)

The US has 15 states/territories with COVlD outbreaks, characterized by one or multiple counties at high to very high levels. The largest waves are in California, Texas, Alaska, Hawai’i, and Guam. Washington, Nevada, Mississippi, Alabama, Kentucky, and Florida are experiencing regional outbreaks. Finally, there are isolated hot spots in north central Utah (Summit/Wasatch), north central Illinois (Boone/DeKalb), central North Carolina (Cabarrus), and northwest Connecticut (Litchfield). 

There are major reporting irregularities in Texas. Of the 19 sites online this week, 3 (16%) reported with high/very high levels. Of the 20 Texas sites offline this week that have reported data for last week, 18 (90%) report high/very high levels, with 16 (80%) reporting very high levels. The reason why high and very high sites are disproportionately offline this week is unknown. This creates a major discrepancy between the PMC and CDC maps. If carrying forward last week’s data for the offline sites, the CDC would place Texas in their “high” category, with 21 of 39 sites at high/very high levels (54%), and just below the threshhold for “very high” (17/39, 44%). Houston was previously a leader in wastewater monitoring with 8 sites but has not reported any data the past two updates."

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u/Dismal_Chemistry_434 — 3 days ago

Can I get a rundown on the “types” of LC people refer to here?

I keep seeing people refer to themselves having a “type” of LC but I can’t find any FAQ or run-down or master document that explains the “types” by searching this sub (sorry if this is my poor searching).

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u/Dismal_Chemistry_434 — 3 days ago

Glecaprivir? Dr. Stuart Malcolm? Antivirals?

An old friend of mine who doesn’t really know that much about LC recently was encouraging me to try and seek out a specific treatment from a specific doctor they know for my various health issues. They don’t really understand my issues either, but basically these were in some cases initiated and in other cases massively worsened after first wave suspected COVID caught in NYC in early 2020, and are mostly vaguely in the POTS/dysautnomia and MCAS sphere at this point, with possibly some mild more ME/CFS-ish stuff, and maybe some kind of autoimmune disease or even specifically Sjogren’s based on some blood tests.

Anyway they specifically pointed me to someone they have met through their professional contacts where they live in the San Francisco Bay Area named Dr. Stuart Malcolm (there seems to be an interview with him on Youtube from a few years ago when he was associatd with some place called RTHM, though not sure he is still there, don’t see him on their website) who they said ”successfully” treats long COVID with the anti-viral drug glecaprivir (which is part of the cocktail in an anti-viral for Hepatits C marketed as Mayvret). They said that this doctor had told them that this anti-viral worked because it targeted SARS-CoV2 living in the “gut.”

If it’s not obvious already I’m an extremely skeptical person, but I was wondering what experiences or knowledge anyone on here had with this drug, this doctor, or anti-virals generally? Especially for LC/PASC stuff more in the POTS/dysautonomia, MCAS, or autoimmune realm but also ME/CFS.

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u/Dismal_Chemistry_434 — 5 days ago

Ge 15.6 cu ft vs Frigidaire 13.9 cu ft?

These are the only two new refrigerators I know of that really fit in the apartment kitchen space I would like to get them into but also have enough capacity (there are some smaller ones that also fit). Which would you go for/recommend? I’d say my main top two concerns are how noisy they’re going to be and how quickly it’s going to break.

Also both of these have slightly less energy efficient variants, and I’m kind of curious if those for any reason might be less noisy or more reliable for any reason related to the technologies used?

Also let me know if you have other suggestions, I need something around 14-15 cubic feet of storage, under 62 inches high, and with a depth close to or below 30 inches without handles (I know few of them don’t have handles). Oh and width probably around 30 inches at max. The space it would go into is 32 inches wide, 63 inches high, and the wall next to it is 27 inches out. But it’s not completely enclosed in this space, it’s these very old very shallow cabinets.

Frigidaire 14 Cu. Ft. Top Freezer Refrigerator : FFHT1425VV

https://www.frigidaire.com/en/p/kitchen/refrigerators/top-freezer-refrigerators/FFHT1425VV

GE® ENERGY STAR® 15.6 Cu. Ft. Top-Freezer Refrigerator

Model #:GTE16DTNLWW

https://www.geappliances.com/appliance/GE-ENERGY-STAR-15-6-Cu-Ft-Top-Freezer-Refrigerator-GTE16DTNLWW

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u/Dismal_Chemistry_434 — 10 days ago
▲ 1 r/MCAS

Did oral cromolyn increase your BP, or worsen orthostatic hypertension issues?

Has anyone who took oral cromolyn for MCAS generally had it increase your BP overall?

Has anyone with MCAS and POTS who took oral cromolyn seen an increase in overall blood pressure and/or in severeity/incidence of orthostatic hypertension symptoms?

I’m not sure if it’s the cromolyn I started a few months ago for MCAS that’s doing it or if it’s a coincidence and related to other medication changes or non-med issues and changes in my POTS or overall health, so curious.

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u/Dismal_Chemistry_434 — 15 days ago
▲ 0 r/POTS

Anyone with POTS taken cromolyn and have it increase BP overall and/or severity of orthostatic hypertension type issues?

Has anyone who took cromolyn for MCAS or other issues but also has POTS seen an increase in overall blood pressure and/or in severeity/incidence of orthostatic hypertension symptoms?

I’m not sure if it’s the cromolyn I started a few months ago for co-occuring MCAS issues that’s doing it or if it’s a coincidence and related to other medication changes or non-med issues and changes in my malady.

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u/Dismal_Chemistry_434 — 15 days ago

Controversial on this sub? : I only wear N95 most of time to avoid COVID sequelae for self & family, & will stop if that risk seems minimal

I’m just curious is if this is a controversial view on this sub, because I’ve gotten impression it might be:

I wear an N95 indoors in public (and outdoors if crowded), monitor/modify ventilation/CO2 levels, use air purifiers, avoid virtually all restaurant situations (indoors and outdoors), and get twice yearly Novavax boosters (and sometimes try other stuff but mostly just those things), because I am trying to avoid SARS-CoV2/COVID and it’s long-term damage/sequelae, and avoid any impacts for my family/household members, who do likewise.

If SARS-CoV2/COVID continues the decline in prevalence that it’s been on in the last two years or so based on all available data, and/or new pharmaceutical technologies make the chances of infection or risk of infection much lower, I will not continue to constantly do all of these precautions.

I am not going to do those things for other pathogens because other pathogens ciruclating where I live in NYC/NY/USA currently are not as dangerous.

And as further disclosure, I actually have had post-COVID health issues (many of which persist) as well as post-viral health issues (some that persist) that pre-date COVID, though those pre-COVID ones were much less problematic than the ones that came from COVID. I take 4 meds daily to manage MCAS issues, and have been on and off meds for last 5 years (mostly on) for low level POTS/dysautonomia issues. I am partially disabled by mild-ish MCAS, ME/CFS, POTS issues.

But in my life the stress of worrying about ventilation everywhere and the physical and social discomfort of constant N95 wearing is not something I will continue to do constantly if it gets to a point where COVID seems a more minimal risk to myself and my household members. And I believe things are going on in that direction.

I will always wear an N95 anywhere masks are requested or suggested. And I will probably always wear an N95 on the NYC subway system, during air travel, and some other specific indoor mass areas. I will probably be much more likely to avoid those spaces in mid-winter/height of cold/flu season, or during COVID surges even smaller ones, and if I have to go there to wear an N95 and monitor ventilation/CO2. But it’s not going to be a constant part of my life year-round in the future, at least I hope not — I personally believe COVID is going away as a risk like it has been, and I interpret the data to show that. Of course I could be wrong, or some other nasty airborne bug could take its place.

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u/Dismal_Chemistry_434 — 23 days ago

Questions about OTC preventatives available at USA pharmacies

Due to a specific recent high risk (but not known exposure) situation my household wants to quickly get ahold of some products ASAP that might reduce chances of contracting COVID. We just picked up some Xlear brand saline nasal spray with xylitol and some CPD 0.1% mouthwash. We also have numerous oral antihistamines on hand, and could get some Azelastine/Astepro easily and quickly (but haven’t yet, see question below). Mail ordering something is not really an option as far as I know (correct me if you know of something that can come in 24 hours or so). So 3 questions:

  1. What else do people recommend that you can get OTC at USA pharmacies or otherwise easily and immediately in the USA?
  2. What is your process for using xylitol, saline, CPD mouthwash, antihistamines or anything else in terms of before/after high risk event, and dosage etc.?
  3. I know antihistamines are generally something that might reduce risk of infection after exposure, but I’m curious which ones have demonstrably shown this in studies aside from Astepro/Azelastine nasal spray, and has there been any comparison of different ones effectiveness?
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u/Dismal_Chemistry_434 — 25 days ago

Recommendations on kitchen compost bins and compostable bag liners for NYC conditions?

My south Brooklyn 60 unit apartment building finally started complying with city law and making a compost/food-scrap bin available for residents in the basement of my building. Anybody recommend a specific kitchen compost bin for any specific reason? I start looking into this online and there are so many options my eyes glaze over and brain shuts down. We finally got roaches under control in my apartment using insect growth regulator products and really don’t want any new pest problems, and I’m not very excited about disgusting smells either. Also while I don’t think it’s required I’m pretty sure I’m going to use compostable bags/liners for a variety of reasons I won’t go into, but I know from past experiences that Biobag brand isn’t reliable and will easily shred when filled with diverse food scraps and coffee filters etc., so looking for recommendations for those.

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u/Dismal_Chemistry_434 — 1 month ago
▲ 7 r/MCAS

Has better managing MCAS (especially with oral and/or nasal cromolyn) helped reduce amount of post-viral issues you have after an infection and/ or reduced your rate or severity of respiratory/flu-like infections?

Has better managing MCAS (especially w/ oral and nasal cromolyn on top of H1 /H2 antihistamines) helped reduce amount of post-viral issues you tend to have after a respiratory or flu-like infection and/ or reduced your rate or severity of respiratory and or flu-like infections?

I am having an amazing positive experience right now taking oral and nasal cromolyn along with H1 and H2 antihistamines for my MCAS-like issues (also helping my POTS-like issues) and I’m wondering if it may reduce the rate of diverse post-viral issues I seem to have (since I hit 40 and my health went to hell) after mostly initially mild respiratory infecrions or brief flu-like ones.

Also as there are various studies about other nasal sprays and various antihistamines reducing rates of COVID infection or other respiratory viruses, I was curious if any one has noticed fewer/less severe infections in cromolyn especially nasal spray.

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u/Dismal_Chemistry_434 — 1 month ago

Based on one grandparent, and then one great-great-grandparent, Family Search populated my tree with dozens of people going back to the 1300s…what is happening here?

I’ve been playing around with ancestry[dot]com for a little while now, it’s interesting enough. But I entered in my parents, and my grandparents into familysearch[dot]org for a tree and it tried to guess who each of them were but failed until my paternal grandfather, both of whose parents were Irish Protestants who emigrated to the USA in the early 1900s, and then based on me saying “yes that’s him” it managed to populate a tree of dozens of people (maybe over 100) going back to the 1300s in some cases, pretty much almost all based on the ancestors of my great-great-grandmother… basically all in Ireland or England…where is it getting all this? I’m a pretty skeptical person and uh…this seems suspect?

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u/Dismal_Chemistry_434 — 1 month ago

How to find birth documentation for a child born in Gaspe, Quebec in 1886 to an English speaking (probably Protestant) family?

EDIT: LOL, sorry about this, well after posting this I spent another 5 minutes looking and found this which probably answers all my questions in the section titled “Quebec: My Canadian ancestor was born in Quebec. How do I get a birth certificate/record?”. But I’m glad to take any other recommendations and I’ll leave this up and post this link here in case it helps anyone else:

Finding and Obtaining Ancestral Records : https://www.reddit.com/r/Canadiancitizenship/wiki/index/table-of-contents/genealogy-research--finding-records/

ORIGINAL POST:

I am a U.S. citizen and want to apply for Canadian citizenship by descent based on my great-grandmother who was born in Gaspe, Quebec in 1886 in an English-speaking family I highly suspect would have been Protestants (possibly important as I have heard church documents can come into play in old Quebec), grew up there, and as an adult married an American and moved to upstate NY.

A little over a month ago when I first even learned this might be possible due to recent changes in Canadian law, I recall somewhere seeing a rundown on ways to get birth documentation from that far back for people from Quebec, which I gathered sometimes was tricky. I’m not immediately finding this again and I was wondering if anyone could advise me or point me to a good primer on this?

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u/Dismal_Chemistry_434 — 2 months ago
▲ 2 r/POTS

Has anyone else had oral cromolyn lower their pulse and decrease severity/frequency of orthostatic tachycardia and associated symptoms?

I am a near 50 male and have mildish Long COVID, mild to moderate POTS, mildish MCAS like issues that became worse recently, possibly mild relapsing/remitting MECFS/PEM stuff, and may have early Sjogrens based on some recent blood tests but I am not yet firmly diagnosed.

I have been taking beta blockers most of the last 5 years for POTS, first 3 years on propanolol and last 2 years on atenolol, though I had a period of around 8 months last year where my POTS was in partial remission so that I could manage it only with lifestyle stuff. I also have been on H1 & H2 antihistamines most of the last 5 years which has helped tremendously with the GI aspect of my MCAS-like issues, but not the respiratory aspect so much. There was a year or 2 I also took nasal cromolyn regularly and I thought it helped with both my respiratory issues and possibly also oddly my POTS, but I stopped ultimately as I felt it declined in utility over time.

I actually stopped taking H1 antihistamines entirely for about 5-6 months this fall and winter because I realized that both the ones I had been taking at different times long-term were causing me worsened fatigue issues long-term (Zytec and Xyzal, which are very chemically similar). This was likely a mistake as I gradually developped new, worse GI and skin issues. I gather H2 antihistamines alone are not always as effective even for GI stuff as in combo with H1. I am now also back on the H1 antihistamine Allegra along with H2 Pepcid, but my doctor is also trying me on oral cromolyn sodium — which has been pretty much a stunning success (though not a complete cure for anything).

I was able to work up to full dose of 2 vials, 4 times a day very quickly with clear benefits and without any major side effects at first, but then after a couple of weeks had nausea problems and doctor had me ratchet back to 1 vial 4 times a day — which for me seems to be the sweet spot not only for avoiding side effects but for getting the most positive effects.

Not only are all my respiratory, skin, GI and other MCAS-ish issues lessend, but my orthoatstic symptoms are lessened, my measurable orthostatic tachycardia events have declined in frequency to very few now, and my overal restring heart rate went way down to the point where I decreased my atenolol dose because I was having bradycardia that was causing some weakness.

It’s also really great because beta blockers really haven’t been working as well for me as they used to. I may experiment with weaning off them entirely, as I was off them most of 2025, but things are good right now so I’m not making any rash major changes (As I am prone to, I’m also prone to not wanting to take meds even when I really should…I was raised by hippies and didn’t need any meds most of my life, though the funny thing is I was saved by corticosteroids as a small child with idiopathic kidney disease that thankfully resolved within a couple of years).

I guess this means my POTS is heavily intertwined with my MCAS, maybe even partially (or fully?) secondary to it.

I don’t know if this will last, but it’s amazing right now. Any one else have this experience?

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u/Dismal_Chemistry_434 — 2 months ago

Nasal (and orally inhaled) corticosteroids may increase COVID infection risk — study suggest it, small possibility it happened with me, anyone have any experience with this?

This is the study: Impact of nasal and inhaled corticosteroids on SARS-CoV-2 infection susceptibility

This study also may be of interest, it’s about general respiratory infection risk: Comparison of Infection Risks Between Various Inhaled and Intranasal Corticosteroids: A Pharmacovigilance Analysis Based on the FAERS Database

This is my story:

The first 40+ years of my life I had no seasonal allergies, but I have had a lot of respiratory allergy issues in the spring, summer, and fall ince a suspected mild SARS-CoV2 infection very early in the first wave / late winter 2020 (before testing was even available, before most of us had even heard of masking, long before we knew about asymptomatic spread, and before it was even clear to me that COVID could be as mild as this unusual illness I experienced with odd chest-cold-like aspects among various strange symptoms was — I was basically dealing with post-viral/post-COVID sequelae when the city was going into lockdown.)

A few days ago I decided to give nasal corticosteroids a try again for the sinus pain issues I have with these issues — specifically Nasonex containing Mometasone. These things are all OTC in the USA though I kind of wonder if they shouldn’t be. I had some really weird basically cognitive side effects along with a nasty sore throat from just 2 days taking a different nasal corticosteroid drug in the product Flonase back in 2020, and I’ve heard about other people having similar issues, but in 2024 an allergist recommended Nasonex with Mometasone as superior and I tried it.

In 2024 I remember Nasonex helped for a few weeks with upper respiratory issues (stuffiness, runny nose, congestion, sinus pain). But then those issues came back and I developed a bout of painful lung congestion as well as at that point only my second ever outbreak of plantars warts (caused by HPV virus). I became worried the nasal corticosteroids were causing systemic immune suppression leading to infections and viral resurgence (though doctors keep telling me they don’t do have systemic effects).

Also a few weeks, maybe as much as a month, after I stopped the Nasonex back in 2024 I also had my only confirmed case of COVID, which lasted 4 weeks and I could not fully clear it even after 2 rounds of Paxlovid (I twice went negative on rapids for a day or two but had 2 rebounds).

I had no obvious exposure, and since the first lockdowns I have takne pretty strict precautions that have otherwise have kept me from getting infected throughout the pandemic. But this infection in August 20204 was during one of our last fairly large waves in NYC, and I know from accounts at the time on Still COVIDing NYC that many local Novids got it in that wave (I didn’t count myself as a Novid due to my suspected 2020 infection, but these people did/were). But because of the time gap I didn’t really associate the Nasonex with the COVID and maybe it had no relationship.

Anyway there’s warnings on the Nasonex package to not take it if you have TB or see a doctor if you are exposed while taking it to measles and chickenpox, and I decided to look into any actual science related to COVID exposure risk. Thus I found the studies linked to above.

Anyway FYI and wondering if anybody else has any experience/knowledge about this.

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u/Dismal_Chemistry_434 — 2 months ago

Has anyone else noticed that Eugene Pontecorvo and his wife look like siblings?

Seriously. Or maybe cousins. But they definitely look related. Just saying. It‘s weird. It’s almost like a real life version of Milhouse‘s parents on the Simpsons.

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u/Dismal_Chemistry_434 — 2 months ago

“Go to therapy” is the most worthless advice

Now bear with me, because this starts from a tangent and gets to the point:

I started thinking about this because I am a middle aged (near 50) dude with a common post-COVID health problem (POTS) that has to do with your body mismanging circulation when you stand or sit such that blood pools in your lower extremities and sets off a whole complex variable chain of issues upstream.

It's completely physiological but also can cause cognitive/mood issues due to lack of blood flow the brain and excess noradrenliane/adrenaline etc., and because POTS has always been somewhat more common in women it is often misogynistically put down to hysteria and gaslighting people by sending them to therapy/psychiatrists etc. is common.

So I was over on a POTS sub and was asking for advice for medications because even when I get all the other disabling symptoms of this disorder more under control I still have this crazy thing where as long as I’m lying down I feel emotionally totally fine but when I’m sitting or standing a good deal of the time I feel kind low level irritable, agitated, nervous, full of dread if I’m unlucky or if I’m lucky giddy, etc., because of the effects of the blood flow and the noradrenaline/adrenaline shooting off to speed up my pulse to return pooling blood etc.

And weirdly I had to argue with people over there who said they had the same malady that I don’t “just need therapy.” Which ticked me off no end.

And the funny thing is I have been aware of impending ecological and social collapse for most of my life, and I have been depressed about it at times, and I have hung out with a lot of marginal people aware and concerned with this and living alternative marginal lifestyles because of it and suffering mental health issues because of it, and a lot of my favorite people died well before their 40s. I also have hung out with a lot of people into all manner of self help mental and physical stuff, and practiced it. I know my body more or less — or did before my neurological system was collapsed by COVID in 2020 — and I know my emotions and my mind.

And I know what mental health problems are like. Mental health problems don’t go away when you lie down, which is how my problems with irritability, agitation, nervousness, dread, giddiness etc. with POTS are. Talk therapy would not be USELESS, at least not any therapy I’ve ever heard of or experienced.

Never the less, it gets worse, because though my POTS mood issues are mostly biophysical/chemical, and flares are mostly set off by physical stress, allergen triggers, or infectious disease, they also can sometimes be set off to a much lesser degree by emotional stress — but, again, mostly for me that is stuff that I can’t control at all, so therapy is fucking worthless.

How does therapy do anything about my being upset about being socially and economically sidelined by my new post-COVID disability, or being sidelined by my COVID precautions to avoid reinfection?

More importantly, how does therapy do anything about my being upset over anthropogenic ecological collapse? Over AI killing all life on earth? Over humans killing all life on earth? Over the AmeriKKKan regime setting up concentration camps? Over the AmeriKKKan regime sending people to federal prison for 30 years for owning left-wing zines or for 50 years for attending protests or for 100 years for self defense to stop fascist pigs from shooting people?

“Go to therapy” is the most useless fucking bullshit I have ever heard.

End of rant, thanks for hanging with me.

And BTW this is just a rant, please don’t respond with suggestions of weird ass “alternative” health crap. I don’t believe in that either LOL.

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u/Dismal_Chemistry_434 — 2 months ago

What are odds I actually have Sjogren’s with only symptoms, PSP positive, and high ANA? 1 in 1000?

What are the odds that I have Sjogren’s if I have some possible but not specific symptoms, and sicca issues but pretty minor, and tested positive only for the Parotid Specific Protein (PSP) on the Early Sjogren’s Panel but not for the other 2 proteins or for SSA and SSB (and have consistently sky high ANA)? Is the chance this is Sjogren’s 1 in 1000? 1 in 1 million? What is the false positive rate for this?

And if I do have it, what are the odds a rheumatologist really cares if I am otherwise seronegative, just PSP and ANA? Can I can get diagnosed without a painful lip biopsy (that I won’t do because it’s not COVID-safe and since all my chronic health issues started with COVID I am extremely COVID cautious) or the painful Schirmer test (sounds painful anyway), or without having to go to 12 rheumatologists before I find one who knows what they’re doing (which I’m also not going to do LOL) — I’ve been quickly sent away by two rheumatologists when I didn’t have the Early Sjogren/PSP result based on most of same issues (probably never mentioned dry mouth or eyes because they are more recent but still mild and intermittent except I can’t produce tears)?

I just don’t want to waste my time if this is like high ANA and it’s really unlikely it’s meaningful or will be given credence, which is impression I got from my GP after test results, and have heard on here 1 out of 3 proteins often not taken seriously by doctors. I’ve lost so much time to ill health the last 6 years and I’m doing better overall recently and don’t want to spend that time in doctor’s offices — especially as I don’t know how many more years I have as I’m 48 and one of my parents died at 54, and the world has so gone to hell recently too (and I’m in USA, very much hell now LOL).

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u/Dismal_Chemistry_434 — 2 months ago

What, if any, are the treatments for Sjogren’s overall as opposed to for symptoms of it? & Is there any point in seeing a rheumatologist & getting diagnosis if your symptoms that might be Sjogren’s are well enough managed without it?

I’m a late 40s male and recently learned there is some at least small chance I might have Sjogren’s based on symptoms and my positive result on an Early Sjogren’s Panel due to high PSP (Parotid Specific Protein), as well as my generally sky high ANA on several tests repeated over the last few years — but I gathered from my PCP who specializes in Long COVID and other post-viral issues all this is not particularly indicative of Sjogren’s since I wasn’t positive for the other Early Sjogren’s test or SSA/SSB -- I had pushed for the testing mainly based on increasing sicca issues, mainly dry mouth, and the fact I can no longer produce tears as far as I can tell — though these are far from the only issues I have that might be consistent with Sjogren's.

So along with mild discouragement from my PCP and that I generally am doctor avoidant and have had to see them WAY more than I would like do to recent issues (in my 30s and early 40s I saw a doctor maybe once every several years) and the fact that I am currently getting decent treatment from them for my known existing issues including Long COVID, POTS/dysautonomia, MCAS, and acid reflux, I’m honestly unsure whether to bother trying to see a rheumatologist for further evaluation because 1) it seems like there is no treatment usually for Sjogren’s the disease, just the symptoms (though I hear something about hydroxochloroquine but not sure when that is used and for what) so I don’t see how the effort will help me; 2) because I’ve had mediocre to bad experiences when I saw 2 different ones in the past related to my high ANA only and my various new chronic issues described below...

Anyway, like I mentioned since being infected with SARS2 (or as the WHO renamed it to downplay its seriousness by distancing it from SARS “COVID”) I have suffered from various long COVID, POTS/dyasutonomia, MCAS including GI and upper and lower respiratory issues, and drastically worsened acid reflux related issues. These things are all way more significant to me than my relatively mild sicca symptoms. I don’t have joint pain or any other kind of pain issues as a major ongoing problem. I know some of this stuff could be Sjogren’s related, but then again might not be. I am relatively doctor avoidant probably compared to most people with these issues, as I really haven’t had much testing beyond basic blood tests and a couple of chest x-rays and then more specialized testing for my heart (echos and Holter and EKG recently, a stress test back in 2021, not repeated recently due to the issues it causes my POTS/dysautonomia) as I have a history of sudden early death from heart disease in my family and since these issues started in 2020 I have frequent bouts of various chest pains so far ruled as non-cardiac-related.

So like I said in the subject heading, what, if any, are the treatments for Sjogren’s overall as opposed to for symptoms of it? & Is there any point in seeing a rheumatologist & getting diagnosis if your symptoms that might be Sjogren’s-related are well enough managed without it?

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u/Dismal_Chemistry_434 — 2 months ago

Confusion about normal systolic but diastolic BP in 80s & hypertension

So my systolic BP is basically fine by the current, post-2017 overhaul BP guidelines (occasionally in the “elevated category” but often normal), but I frequently have a diastolic BP in the 80s, though far more often low 80s than high 80s. Once in a long while it reaches 90. Any diastolic BP in the 80s is technically “hypertension stage 1” according to the guidelines post-2017, and is flagged as such by my Omron home BP cuff. And 90 or higher is “hypertension stage 2.” Generally these “hypertension stage 1” diastolic readings take place when the systolic is normal so I guess that makes it “isolated diastolic hypertension.” Anyway this has been the case for a few years and I have seen cardiologists because of what turned out to be non-cardiac chest pain, plus I have minor mitral valve prolapse that needs to be checked at least every few years, and so I’ve talked to not just my GP but also a couple cardiologists about this (because my first one left practice), and they’ve seen my readings in the office, and they don’t seem to have any concern at all. So I’m confused — are those guidelines from 2017 generally discounted by most physicians in regards at least to isolated diastolic BP?

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u/Dismal_Chemistry_434 — 2 months ago
▲ 2 r/POTS

Does anyone else find beta blockers are overall very helpful except they get MORE frequent bouts of positional and stress-related chest tightness & pain when they’re on them?

In the last 6 years I’ve been dealing with POTS and I’ve at various times been on propanolol, atenolol, midodrine, and on nothing at all, and I find that when I'm on beta blockers, in my case both propanolol and atenolol (the first non-selective, the second cardio-selective) that I tend to get MORE frequent (but not constant) recurring bouts of tightness and mild pain in my left chest related to stress, positional changes (standing in place, first standing up, crouching up and down), and possibly sometimes exertion — but in the past the exertion part is less clear and consistent and recently it just hasn’t been happening from exertion virtually at all.

Generally beta blockers are VERY helpful, especially atenolol at relatively higher doses (50-75mg per day). And this problem is NOT constant — it seems more like I might go months without this issue OR I might have bouts for a week or two where I have these on and off parts of the day triggered by standing or stress mainly, most frequently early in the day as all my POTS stuff is always more intense then and I take my beta blockers then too because they otherwise impact my sleep if taken later.

My theory is that it’s a similar physiological effect to what people with anxiety or panic attack induced chest pain have — I just have never had that in my life before and rather anxiety or stress tends to impact my GI system mainly. This would account for it not reliably happening from exertion but much more from stress and from standing up (when my body freaks out some due to the POTS). It’s also possible some of it is a bronchospasm as I can get other asthma issues too in the mix with this and sometimes take albuterol which helps with that (even though it somewhat cancels out the beta blockers). I didn’t have any asthma between about age 9 and 43 but it came back some intermittently with POTS.

There’s no evidence that this is a separate heart problem: I’m a late 40s male and I’ve been told by doctors that the pattern of pain I’ve generally described isn’t highly indicative of a cardiac cause, and I’ve still had tests and my various tests show no indication of serious heart issues — I have a very minor congenital mitral valve prolapse with minimal regurgitation, and I may sometimes have bouts of the arrythmia known as PVCs that may cause some minor symptoms but my 7 day Holter showed an overall quite low PVC burden and it wasn’t clear if the sensations I flagged during some PVC episodes were related or coincident and more due to POTS. I don’t really have a cardiologist I like or trust that much right now unfortunately (or who knows anything about POTS).

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u/Dismal_Chemistry_434 — 2 months ago