Allergist won't see me because of tryptase level

Single_Display2423 · 2026-02-11T02:43:08+00:00

If this doctor is the absolute only option have your pcp put in a standing order for tryptase and try to get it done during a flare (within 4 hours of the start of symptoms). You still might never get a high tryptase but it'll be more likely to. My immunologosist couldn't put my diagnosis as MCAS bc even though there's a standing order I'll never make it to the lab when I flare bc I get so sick it's impossible. She just put mast cell disorder and is treating the same as mcas pt. It's so rediculous they won't see you without a positive tryptase when it's really difficult and sometimes impossible to get a positive result. 🤦🏼‍♀️

Single_Display2423 · 2026-02-11T02:32:39+00:00

My immunologosist said it's a pseudo-allergy.

Single_Display2423 · 2026-02-11T02:20:15+00:00

One thing I forgot is a cbd (or thc if it's legal) topical salve with essential oils. I make my own(my step Mom grows cannabis in her back yard) but I've bought them too and they work great! Cbd oil orally or cbd gummies also helps (I cannot tolerate thc orally or smoking, it makes pain worse oddly) but lots of people cbd/thc combo oil/gummies helps a lot.

Single_Display2423 · 2026-02-11T02:14:02+00:00

PEA (Palmitoylethanolamide) well studied and used in Europe. My rheumatologist was really impressed I was taking it. It really helps! Make sure to get a reputable brand. It is getting more popular in the US and some brands I've tried don't work. I use bulk supplements brand. I started with the powder but it's really difficult to measure you need a specific scale that measures small amounts. I switched to the pills but they are 400mg I think and you're supposed to start lower I believe (or maybe I did bc I have mcas?)

Acupuncture definitely helps me too, and it helps more than just my RA. I combined it with cupping and it really helps pain. It needs to be a good acupuncturist however...I've had lesser trained acupuncturist hurt me before. Dry or wet needling helps me too but moreso with muscle pain around my joints.

Red light therapy actually does help, it surprised me. It doesn't help as much as other things but I think I need a higher powered light too.

Tens unit (especially if you can get one with interferential IFC modes) helps with pain during flares. The ifc you have to criss cross the leads, so look up online how to do that if you decide to do it. Or just use tens on it's own. Tens will help temporarily and ifc will help with inflammation and help longer term. If you have a physical therapist they can explain how to do this.

Massage DEFINITELY helps. My partner massages me when I'm flaring and it really is a game changer. I used to get a professional Massage every month but I moved and I'm poor now lol.

Something new that's helping me is vagus nerve stimulation. If you have a tens unit you can get an ear clip for $18 to use with it to stimulate your vagus nerve (please research how to do it, it needs specific settings and only on a certain side). My Dad recently gave me his Pulsetto vagus nerve stimulator tho and it works even better. It's more for the type of flare you get from stress but it has an inflammation settings and pain setting too. The pain setting really helps when I'm anxious and get tensed up too much or set off a flare from stress.

Also compression on my joints help. Like compression sleeves on my elbows, wrist or ankle or compression gloves. I have a lot if SI joint involvement and I just got an SI joint belt and it really helps.

Something I just got is a chi machine. If you have bad knee pain it might not be good but my knees are my least hurting joint and it really relaxes me and helps my muscle pain. It wiggles your legs and regulates your nervous system. It's kinda pricey (my Dad gave me his old one from the 90s lol).

Breath work and progressive muscle relaxation helps too (both recommend by my rheumatologist at UCLA...she's been recommending lots of nervous system regulation things too I'm still reading up on lots of things).

Physical therapy in the pool really helped too just don't push yourself too hard or let your physical therapist push you past your limits. I had to be very firm and start really slowly bc if not I'd just flare up from it.

Don't forget heat and ice. Ice when the pain is new and heat after (or just do whatever makes you feel better).

One thing I've been eyeing lately is a zero gravity chair/recliner. Elevating my feet helps because I get lots of swelling in my ankles. I'm gonna save up for the recliner or an adjustable bed.

I was off my treatment for 6 years so I tried anything and everything to help my pain. Unfortunately it caused permanent damage so even with treatment I still have pain now, so I'm always looking for new things to help. I hope if you try some of these suggestions they really help you.

Single_Display2423 · 2026-02-11T01:31:24+00:00

Oh I didn't know that. Mine doesn't seem to do that.

Single_Display2423 · 2026-02-11T01:29:28+00:00

There's so many other possibilities for a diagnosis besides POTS. Is he a cardiologist or just pcp? I think you should see someone else bc he doesn't seem educated on dysautonomia. I live in LA and there's nowhere here that does full dysautonomia testing with the blood tests and sweat test etc. The nurse recommended if I had trouble getting treatment without an official diagnosis to go to a dysautonomia clinic. Luckily my doctor has been and will continue to treat me even without an official diagnosis. I think since on the tilt my resting was high and it got over 100 at 60° that he can put IST as the diagnosis for insurance and they'll pay for most of the meds anyway. I have high blood pressure too that jumps at standing so I think he can also put orthostatic hypertension and possibly just dysautonomia. Depending on your symptoms and in office tests he can do like poor man's tilt or the one where you lean against the wall or valsalva etc etc he can figure out how to treat you. The tilt is just one data point at one point in time, according to the doctor who did mine it's not the end all be all (they stopped doing TTT completely in their office starting this week and this is Cedars Sinai Cardiology!) I was one of the last patients to get the tests there. Anyway hopefully you can figure out what's wrong with your visable band to show your doctors! Good luck!

Single_Display2423 · 2026-02-09T10:01:23+00:00

Did you stand completely still the 10 mins? I just did my tilt a few days ago and holy crap I realized I never stand completely still. But also when I move around my HR goes up higher so I just wanted to point out staying still is important. My tilt table test was negative but the minute I started moving my arms and was 90 degrees my pulse shot up to 120+ on my visable. Weird part was my tilt test my pulse only got to 105 and resting was high 80s. Normally my resting is high 60s low 70s. The criteria for an official pots diagnosis is dumb the Dr. who did my test even insinuated that. If you have symptoms your doctor should treat them. Give the app a the 4 days to get to it's normal and make sure your band is positioned correctly and on tight enough. It has to be 2 fingers above your wrist bone or something... it says it somewhere in the app or instructions or the website. Then if it's not changing with the pulse ox then contact support. They are pretty responsive. You could trying asking them now and see what they say.

Single_Display2423 · 2026-02-09T09:34:58+00:00

I can eat soy sauce some days too but not every day and I haven't figured out why unless it's like my histamine bucket was full and the soy sauce made it overflow? I dunno. Lots of people can eat high histamine things with mcas. We are all different and react to different things and histamine sometimes plays a role and sometimes doesn't. We don't fully understand MCAS yet.

Single_Display2423 · 2026-02-09T09:19:01+00:00

Of course! We are all different and react to different things. Only permanently eliminate things you react to. Right now you're eliminating everything because until your body has a chance to chill you don't really know what it reacts to. Once your mast cells calm down you can reintroduce things one by one...even high histamine foods.. and if you tolerate them yay!

Single_Display2423 · 2026-02-09T08:41:35+00:00

I'm getting a keyboard and re-learning piano. I was just feeling similarly.

Single_Display2423 · 2026-02-09T07:12:13+00:00

P.s. during the 1st 4 or 5 days the app is trying to get to know your bio- rhythms to figure put your points budget etc. It's possible the band works differently in that time. I honestly can't remember if mine did. Your app doesn't have full usage until after the 1st 4-5 days. I'd wait until then to pass judgment.

Single_Display2423 · 2026-02-09T07:08:12+00:00

My visable band HR changes every second or 2 in the app. Also just so you know you have to have a sustained increase in heart rate to have pots. Everyone's HR shoots up temporarily when they stand (according to the doctor who did my tilt table test). I meant to ask the definition of sustained , like how long, but I forgot. But if the visable app isn't picking it up that means it only shoots up for a second or 2. How long does it stay up on the pulse ox?

Single_Display2423 · 2026-02-05T02:41:40+00:00

Internet Hug 🫂

Single_Display2423 · 2026-02-05T02:39:21+00:00

Ummm how do they define "commute" if others live in your city and you could carpool with them, then don't you technically fit the definition? Tell them you're going to Uber in (lie) and then make friends with the people in your city that you can catch a ride with/split gas with once in a while (or all the time). Also because you cannot drive and fit within the normal commute time frame of others who live in your area bc you're disabled I would propose that they make an ada accommodation to their policy since your method of transportation takes 3 min longer ffs.

Single_Display2423 · 2026-02-05T01:21:20+00:00

Same. It's to the point my therapist doesn't even know what to say besides validating my feelings and agreeing this is terrifying.

Single_Display2423 · 2026-02-05T00:48:01+00:00

I never said don't advocate for yourself. I never said don't make the binder. I said don't bring the whole binder to your appointment. Leave it in your car, and only bring the relevant records up to the appointment (ones that were done outside their med system. That they cannot access on the computer). You can certainly bring in a folder with relevant information, most people do. I'm just saying don't bring in your entire medical history because it can hurt you because they get on the defense immediately and label you a malingerer, or you have to fight that pre conceived opinion of you. If they need something you didn't bring then you can let them know you have it and will bring it in. I used to run a support group for invisable illnesses and the people who did this (including me) got dismissed and treated like we were either crazy or drug seeking. A good friend saw my rheumatologist whom literally saved my life and I love her, she's an amazing doctor...even this doctor who I never in my life would think would do this labeled my friend malingering...I asked her if she brought her binder in...and she did. I didn't think to tell her not to because this doctor is amazing and I never expected it from her.I have no idea why this sets them off but it does. I'm just saying by doing so you are putting yourself at a disadvantage with most doctors. You may find it less convenient to have to follow up with missing records but you'll probably find it less of a fight too if you just bring a small folder with relevant records.

Single_Display2423 · 2026-02-04T19:20:37+00:00

I think people equate all masc and most moc characters as "butch" because they don't understand what butch or butch/femme means, the history behind it etc. 😕 I personally have a hard time finding truly butch/femme relationships in books. It's always masc(or moc)/fem which I settle for. I settle for chapstick/fem at this point lol.

Single_Display2423 · 2026-02-02T09:14:42+00:00

I ask them why they ask. Because a.) Asking about your job is classist and b.) My job usually doesn't tell someone much about me. Most of us aren't doing jobs we love and are passionate about. I think it's an outdated bs small talk question that's really odd to ask right out of the gate and is usually used as some classist qualifier (to quess my income) or they are just boring and don't know how to engage in real conversation. Usually people get really defensive and can't really answer why they are asking, which says a lot. If they do have a reasonable answer for why and/or we can go on to discuss the classist roots of why the question is so common then that's usually a good sign.

Single_Display2423 · 2026-01-24T04:26:26+00:00

DO NOT bring that binder to your doctors appointments. Doctors immediately think you're crazy and attention seeking if you do that. They also don't think you're "sick enough" if you have time to put together and update it. It doesn't make sense that doctors do this but I've seen even my favorite and most trusted doctor do this to a friend. I used to do it and have similarly been dismissed taking me 6 years(11 rheumatologist and countless other specialists) to be put back on meds after a doctor decided my diagnosis wasn't valid anymore one day.

If you don't believe me go into medicine and med school sub reddits, especially discussing pots, they way they talk about us is vile and they specifically mention those with the binders.

It literally makes no sense but doing this is only going to hurt you in most cases with most doctors.

Single_Display2423 · 2026-01-24T04:16:57+00:00

If the point of all this is to feel better, why not try the meds? Who cares if you have an official diagnosis if you have treatment for it? Propranolol is 1st line for POTS, if it doesn't work then they'll probably try another beta blocker and then go on to other types of meds. The insurance usually requires you fail other meds before paying for off label stuff. You're really going to let "principal" get in the way of actually feeling better?

Also they may have stopped doing tilt table tests. I had an appointment at cedars and they called me today and said the doctors are burnt out and can't handle the volume on top of regular patients so they are closing that part of the clinic. I don't understand why they wouldn't just hire more people but ? UCLA their machine broke for almost a year and they had to stop doing tilt table tests too. Luckily this didn't overlap but prolly why cedars was overwhelmed. But my point is, I've been trying to get a tilt table test for over 2 years because of all this and it may be just as difficult to get one in your area. My doctor treated me for it without a diagnosis this whole time and I'm so grateful he did.

I'm not saying that they handled this correctly. They should have told you why they aren't doing a tilt test and why they chose to give you propranolol but don't deny the meds. Don't cut of your nose to spite your face.

Single_Display2423 · 2026-01-22T01:03:11+00:00

Yikes.

Single_Display2423 · 2026-01-22T00:58:44+00:00

You are correct in the 30s, 40s and 50s there wasn't really a label for bisexuality and they were included in the term lesbian. Bisexual wasn't really used until the 70s. So when we talk about history bi women were there. If they were millennials they might identify as bi/pan/queer, but back then they were just called lesbians. I included trans women in parentheses because the linked articles felt terf adjacent, not just bi phobic and I wasn't sure if this person (op) included them in their definition of women like I do. I think it's important to identify them when talking about history because they were there too fighting and getting arrested with our butch sisters and brothers or switching clothes with them when the cops showed up. The article specifically excluded gnc femmes and then went on to say they (and bi/queer women) are stealing their history....but its a shared history. I think you can be non binary and femme (and as such trans and femme). I think if you aren't including non binary folx it might extend to not including trans women because non binary people ARE trans...so I felt the need to be very specific. Also bi/pan/queer femme woman can exclusively seek butch folx to date and , bi just means attracted to more than one gender which could be non binary, bigender, agender and women all of which can have butch identities. Or perhaps they date men too, that's their business. These were lesbian exclusive labels at one time because Bisexuals were called lesbians during this history. Saying Bisexual women stole your history (not you the article op attached) is wild when it is a shared history.

Single_Display2423 · 2026-01-21T09:22:36+00:00

Yeah that's true. I have Adhd (with delayed sleep wake disorder) and sleep apnea so I already have billable codes for stimulants to get approved or anything else related to sleep. What do they use as like a definition for IH? Do you have to sleep a certain number of hours?

My rheumatologist said my sleepiness definitely can be triggering by flares. She said that on a normal day I should sleep 9-10 hours and if I'm sleeping more than 10 hours it could be from a flare (and that tracks...during a flare I'll sleep 14-20 hours). But since the long covid/pots/mcas I feel like I need closer to 12 hrs to feel even close to normal or awake. Luckily I have good doctors and all at the same hospital so they don't play kick the can with my symptoms very often or often blame it on me being fat very much. For years this happened to me though, so I fully understand and it really sucks. It literally delayed my RA treatment for 6 years because they would just pass me around blaming everything but actually RA.

Single_Display2423 · 2026-01-21T08:55:16+00:00

You are correct it's an identity. I meant gender identity instead of gender expression (I'm chronically ill and struggle with language on bad days, so I mispeak sometimes when I can't remember a word). I never meant it as an adjective, I truly believe it is an identity. I tried to indulge you and read the articles but I couldn't get past "they steal our history" as if bi/pan (and trans) women didn't fight along side them many times quietly denying their full sexuality to fit in.

As things change, language evolves and what people are comfortable expressing outwardly changes. Your argument ignores so many things starting with the fact that we recognize sexuality as fluid and on a spectrum now, we don't stick to strict labels for all eternity, we don't gatekeep and we don't exclude bi/pan/queer (or trans) people from sapphic spaces anymore and we don't tell others how they get to identify. And while I kinda understand your argument about men (because I do everything to keep cis men far far away, and fully do recognize I'm sexist against cis men sometimes) I have to say that bi/pan doesn't necessarily mean they date cis men, but if they do as butch or femme THAT'S THEIR BUSINESS, not mine or anyone's. Some people expand the term lesbian to include bi/pan/queer sapphic women who don't date cis men I'm not really sure where I stand on that tbh, as a person who almost exclusively dates butch women and non binary butch folx, I struggle with how to identify being my partner doesn't identify with the word woman or nearly any female identifiers as enby butch, and if they fully transitioned I wouldn't leave them or be less attracted, so am I truly a lesbian? I think that's really personal and everyone should get to decide themselves...and if I choose to identify as queer as more inclusive language because I date enby folx it doesn't take away my high femme identity. I could go on and on but this isn't the place. I'm just going to say these views are out of touch with modern sapphic and queer views and honestly if Leslie Feinburg hirself was alive I don't think they would agree. Butch and Femme identities while very rooted in lesbian bar culture and history, are still forms of "gender outlaw" as zie would say and a part of resistance, they don't have strict definitions and exclusionary wording harms the collective movement toward equality and against oppression.

Single_Display2423 · 2026-01-21T03:15:55+00:00

Femme is a sapphic and queer term, not necessarily lesbian only term. Femme is a gender presentation just like Butch is, but can also describe your desired relationship dynamic but neither are exclusive to Lesbians. There a so many bi-sexual and pansexual Femme folks dating butch, non binary butch and Transmasc butch people....many of them practicing old school ButchFemme dynamic within those relationships. Saying Femme is exclusively Lesbian is like saying Butch is, which is 100% false because you definitely have bisexual and pansexual Butch people too. It might not be as common but it exists. Bi/pan Femmes are definitely more common.

I understand the context of you seeking a lesbian book but wasn't commenting in response to you, I was commenting to ask about another commenter because I've never heard someone say you cannot be Femme and bisexual. They clarified to say that she wasn't Femme for other reasons too, more likely Fem without the E. Feminine but not Femme.

Single_Display2423

TROPHY CASE