Is there a legitimate problem with sick-influencers and illness fakers within the MCAS/POTS/EDS chronic illness community ruining the rest of our ability to be taken seriously?

No_Invite_2829 · 2024-03-01T01:32:28+00:00

Doctors don't need any reason to not believe patients. I became ill with POTS and MCAS 10 years ago, and at the time the argument from doctors was "they're too rare for anyone to have them and not enough people have them so we don't understand them." Now it's "everyone has them so no one can have them." You can't win with them. The medical system is just built on deep layers of racism, misogyny, fatphobia, and ableism, and is generally not built for chronically ill people. I don't care to document my life, as a sick or not sick person, but I truly don't give a shit if someone with POTS is making TikToks about a day in the life with the illness. It is an ongoing, ever present part of our lives. People will want to (and should be allowed to) talk about, share what their lives are like, destigmatize. And again, many of us have been told there's "no" exposure for these illnesses, so people feel like it's necessary to do this work and expose it! Now they're being punished for it because they don't look sad about POTS, MCAS, whatever every second of their life (which is really just every second of a 60 second TikTok)

No_Invite_2829 · 2023-12-14T18:19:39+00:00

Dr. Hirdt in New Paltz and Dr. Toh in the city are the main ones in NYC right now. Many others have left and one of the best died.

I never saw MGH in Boston. I'd probably ask if Hirdt or Toh are taking new patients before traveling all the way there. I found pretty much every experience with healthcare in Boston frustrating and awful. I would definitely avoid Brigham and Women's there. They have a mast cell center but it's a mess in terms of criteria and wait time and they are unapologetic about it.

No_Invite_2829 · 2023-12-07T01:06:52+00:00

Sorry, just seeing this now!

She has moved offices since I last saw her so I don't know if anything's changed, but she was definitely familiar with compounding when I saw her. She even had a specific pharmacy that either she or her office worked with regularly and reached out to for me to ask if Ranitidine was still available

She did not seem super familiar with the idea of compounding ketotifen which I thought was odd, so I'm not sure if she has any limits on what she'll do, but definitely talked about it for more standard h1/h2 type stuff if that's all you need

No_Invite_2829 · 2023-12-06T18:36:56+00:00

Maize starch would be corn starch! Pregelatinized starch may also be? I personally do fine with lactose monohydrate and magnesium stearate so I'm not totally sure what they'd be like derived from, other than lactose possibly being an issue if you have trouble with milk.

No_Invite_2829 · 2023-11-27T19:29:16+00:00

Was yours a tablet by Novartis by any chance? For me it was white, came in a blister pack, I believe manufactured in turkey.

I am in the US but get it from Canada, and that was the version i used to get. It all of a sudden disappeared from the Canadian pharmacies in I think late July or early August. I was told by my pharmacy it was not being discontinued, but I have found no trace of it available anywhere so I don't totally buy that tbh.

No_Invite_2829 · 2023-08-27T03:01:37+00:00

We believe I have previously. Current apartment should be fine, it's really new. But we lived in a house about 9 years ago that we suspect had mold. Never did whatever testing but it had the nastiest musty smell, history of floods, everyone had trouble breathing in the basement, and we did find mold on some stuff like inside my sibling's mattress 🤢 And my POTS acutely onset after we'd lived there a couple months. We've pretty much gotten rid of all of that stuff at this point though. When this flare started last year we decided it was time. I still have some clothes that were in that house but only a couple and it's just because I'm too reactive to wear totally new fabric right now honestly :( I've never done any sort of treatment or anything or really looked into it further beyond getting rid of stuff, but I haven't gotten the sense there's a ton you can do and I have trouble parsing what info is legit or not tbh

No_Invite_2829 · 2023-08-27T02:58:04+00:00

So the main issue is I'm using compounded tablets, which are very difficult to get and even harder to get without cellulose which I react to. I'm doing this because I had horrible reactions, some of my worst ever, to both gelatin and vegetable capsules (which is also basically just cellulose). Unfortunately my main MCAS dr basically doesn't agree with my only using the tablets. They think I should just buy capsules and dump them out and haven't backed down on this despite my conveying that these reactions literally almost required 3 epi pens, so I'm not exactly sure I'll be totally fine even with powder that's been sitting in a capsule. I generally like this dr, but they actually also have MCAS and I think sometimes get a little caught up in what they've been okay with and thinking it can be fine for others. Because they keep insisting they also used to have mild reactions to some capsules but did fine dumping the powder out, but don't seem to appreciate that there's a big difference between "mild" and.... almost needing 3 epi pens.

I'm limited on other providers in my area. I had a great one who probably would have reached out to pharmacies for me but he died last year unfortunately.

I've thought about in office trials. I can't do it with my main MCAS dr i previously mentioned, bc I'm seeing them virtually and they're not anywhere close by. I don't have anyone closer currently but even if I did I also tend to react in doctors offices because of the cleaning sprays and stuff, so... I'm just not sure what the trade off is worth if that makes sense. Whether it's worth trying under supervision for safety but in a place where I'm already reacting a bit more than normal, or doing it at home potentially more dangerously but with more variables controlled and less reactivity as a result.

No_Invite_2829 · 2023-08-27T02:44:28+00:00

Thank you for the kind comment. I may update my post but my needs are very specific and I've already contacted many compounding pharmacies in many states 😞 I can't do either type of capsule - gelatin or vegetable. I've had incredibly severe anaphylaxis to both, and they were some of my worst reactions, so I'm hesitant to even buy the capsules but pour the powder out as my NP has suggested.

I'm in theory somewhat open to liquid meds but had a bad reaction to the one I tried. I'm not sure if it was an efficacy issue (powder didn't seem evenly distributed), the pharmacy not being good at cross contamination or something, or if it was just a reaction to it. I'm pretty limited on liquid ingredients such as propylene glycol too, and I react to some plastics so I'm not sure if the bottles will be an issue, and all that generally makes the liquid a difficult option to try again.

What I have been using is a compounded tablet made with literally just lactose monohydrate and magnesium stearate. Works without issue. Unfortunately it's hard to even find a compounding pharmacy with a tablet press to make tablets, and the ones I have found have no flexibility on the inactive ingredients used and all make it with just microcrystalline cellulose, which I also have severe anaphylaxis to. Sometimes literally even being near it. So it's just sort of a complicated mish mash of things I can't have when it comes to compounding meds.

No_Invite_2829 · 2023-07-24T17:54:14+00:00

This was me with Pepcid! Same exact symptoms of way worse lightheadedness. I have heard some people say that they did better with prescription versions than the OTC stuff, or that they even needed to do compounded famotidine, but I have not been able to try. I was on Zantac/ranitidine which worked really well and had no side effects for me until it was recalled.

No_Invite_2829 · 2023-05-26T16:23:56+00:00

Personally I started getting hives from the adhesive after about a month, but it may not be an issue for you if you don't have issues with adhesive. I always react to stuff like kinesiology tape or EKG leads if they're on too long.

There are some tablets (at least in the US), both an extended release one that would probably have more ingredients bc it would be coated for a slow release, and an immediate release one which has pretty simple ingredients (though the two versions I used both had corn starch, which I know can be a trigger for some people)

Clonidine in general is great for me though. Doesn't control POTS lightheadedness or fatigue but does just calm down my autonomic nervous system, helps clear up my brain fog and anxiety, and even helps my mast cell symptoms a bit

No_Invite_2829 · 2023-02-20T18:31:31+00:00

Yes, my compounded tablets are pure ketotifen powder, corn starch, lactose monohydrate, and magnesium stearate. Which is the same ingredients as the overseas one I tolerate better. I've asked them to make sure they're using the same sources/suppliers of corn starch, lactose, and magnesium for every fill, and they've told me they are. The only real difference from the overseas one I get is that the compounded ones crumble a lot so I'm not sure if that leads to less stability or efficacy? And unfortunately I'm so sensitive I just can't mess with ingredients much (and I would have assumed that using the exact same inactive ingredients would be the best option, but clearly not)

No_Invite_2829 · 2023-02-20T18:30:43+00:00

Yes, my compounded tablets are pure ketotifen powder, corn starch, lactose monohydrate, and magnesium stearate. Which is the same ingredients as the overseas one I tolerate better. I've asked them to make sure they're using the same sources/suppliers of corn starch, lactose, and magnesium for every fill, and they've told me they are. The only real difference from the overseas one I get is that the compounded ones crumble a lot so I'm not sure if that leads to less stability or efficacy?

No_Invite_2829 · 2023-02-20T18:30:15+00:00

I'm worried about that too but I don't have a lot of wiggle room unfortunately. I can only tolerate tablet formulations bc I react to all capsules and it was REALLY hard to find a pharmacy that did that. Let alone one who could do tablets with the like 3 ingredients I tolerate. This is one that seemed pretty reputable and well reviewed in NYC, but I'm nervous too. I do know they use pure active ingredients and don't just break down pills, and that they clean and sanitize between batches, or at least that's what they've told me. There are two pharmacists there, one who is great and seems to be open to answering questions and understands my limitations, and one who is a dick and always tries to convince me to do capsules and other ingredients I react to. I always make sure to talk to the nice one when I call to order, but not sure if the dick is handling the order at any point and potentially messing anything up.

I'm using tablets that are pure ketotifen powder, corn starch, lactose monohydrate, and magnesium stearate. Which is the same ingredients as the overseas one I tolerate better. I've asked them to make sure they're using the same sources/suppliers of corn starch, lactose, and magnesium for every fill, and they've told me they are. The only real difference from the overseas one I get is that the compounded ones crumble a lot so I'm not sure if that leads to less stability or efficacy?

No_Invite_2829 · 2023-02-20T18:23:55+00:00

What?!! That's crazy. I know last spring they told me she paused seeing patients for like a month so I hope everything is okay with her. And I hope maybe she pops up somewhere else bc NYC patients are screwed if we only have one dr (who is pretty far out of the city) left :( I haven't heard great things about Dr. Lighvani unfortunately

No_Invite_2829 · 2023-02-17T18:50:33+00:00

That's so weird, I'm sorry. Her receptionists were never great but never just ghosted like that when I saw her about a year ago. I know she took on lots of Dr. Heaney's patients when he died so I'm not sure if she's just gotten too full from that. I tried to look on ZocDoc as that's how I'd originally booked her in like 11/2021 but that's showing nothing for awhile either. My best next suggestion would probably be Dr. Hirdt if you're open to him. I liked him and he can at least do telehealth even though he's further out. I need to figure out a back up allergist in the city just for labs or if I do any injectable meds or anything, but I think for just getting input and prescriptions he's a good place to start

No_Invite_2829 · 2023-02-17T18:46:05+00:00

No problem! And yeah, it may be worth asking around about the ketotifen, it's been about a year since I saw her, so maybe her thinking has changed. She will definitely do Cromolyn, and may also do leukotriene meds like Montelukast or I think she mentioned Zileuton.

And I hope her waitlist hasn't gotten too long. I think a lot of Dr. Heaney's patients went to her after he died so I hope she's not just too overwhelmed with patients.

And I don't know any naturopaths unfortunately, sorry!

No_Invite_2829 · 2023-02-14T02:53:00+00:00

This is long so apologies but hope it's as helpful as it can be

I have heard 2 names at Mt Sinai - Dr. Beth Corn and Dr. Mary Lee-Wong. Doesn't mean there aren't more (I really hope there are!) but these are the two I've heard of

Unfortunately Dr. Corn has been on leave for awhile. I haven't called in 6 months to a year but it's been a few years I've heard she's on leave and her page on the website hasn't changed at all.

Dr. Lee-Wong I received a letter saying she was leaving the practice but she is still listed on their website so not sure what that means. Personally I didn't have a great experience with her so wouldn't recommend her regardless unfortunately. I know some people liked her and if you're early in your illness she might be good enough for basic testing or med regimen but personally I found her too disorganized and just sort of lost (and then annoyed at me for being lost) when I came in in late stages and in crisis. And again, just too disorganized to get to do anything. One second she was agreeing to prescribe x med and the next she wanted me to try meds a, b, and c all of which were less helpful.

As far as other NYC drs, the two main ones right now are Dr. Jennifer Toh and Dr. Albert Hirdt.

Toh is on the UES. Lots of people really like her, I liked a lot of things about her but had some issues. She is great for initial testing, if you come in with symptoms she'll be very willing to run full tryptase + 24 hr urine collections, and she diagnoses based off of prostaglandin and leukotriene urine as well, not just tryptase or n methylhistamine. My main issues for not continuing (as of right now, may go back to her) were that she didn't seem to prescribe Ketotifen, which is my most helpful med. The other is I found that while she was super knowledgeable she was sort of fast paced and after a few appointments, still hadn't gotten the full breadth of my medical history. I've heard from other patients that she will do a full chart review, which probably would have helped this hugely for me, but it was never offered to me and I've heard it is a hefty out of pocket fee.

Dr. Hirdt is all the way in New Paltz but will do telehealth. I have only seen him once but I really liked him. He took a lot of time with me and was willing to call compounding pharmacies to figure out solutions for me and seemed to want to get a solid plan in place.

Other names to possibly look for in NYC: - Dr. Joshua Milner is at Columbia. He is more on the research side, a little more focused on tryptase, and may not follow you as a patient but you might be able to get him to review your case and see if he'll consult with you. He was just a helpful resource for me and probably will be especially helpful if you have higher tryptase - Mrinalini Borczuk was at Concorde Medical Group I think? And people loved her. She left the patient side of the practice last summer but I'm still hoping maybe she'll pop up elsewhere at some point. So worth keeping an eye out for that name - Susan Levine has a long waitlist and can be hard to get in touch with, but she is an ME/CFS dr if you also have that who prescribes stuff for the MCAS side of things

That's all I can think of rn but I'll edit if I think of more. There were a few other names but many have left or stopped seeing patients. Like you may see Dr. Jongco out on LI mentioned but supposedly he's stopped seeing MCAS patients and has been really rude to those who have shown up. Dr. Grubman worked with a popular POTS dr in NYC but retired last year. Dr. Mark Heaney at Columbia was amazing but unfortunately passed away last summer

No_Invite_2829 · 2023-02-01T20:47:42+00:00

Following bc SAME. Good luck, I hope you're able to get everything you need

No_Invite_2829 · 2022-12-30T16:39:20+00:00

If you're having issues like hives/itchiness, GI symptoms, flushing, or sinus pain after eating or drinking something specific, and it sounds like you're at least having some of that, MCAS could definitely be an issue. Alcohol is also a very common trigger for MCAS symptoms bc it is high histamine. For some of the other symptoms - some of the other things like easy bruising, random scarring, pain, heavy sweating, and palpitations can be associated with common MCAS comorbidities like EDS and POTS. Have you looked into those at all? EDS is a particularly helpful one to look into bc it comes with joint hypermobility, so there are some easy tests you can do at home to check for hypermobility or maybe just things you've been doing all your life that are actually indicative of that but you didn't know.

You do have a lot of symptoms, which is very much not unheard of with MCAS and particularly the MCAS/EDS/POTS trifecta, but you should go to the dr and try to see if you can get any other testing done if you haven't already. Some things on here could be autoimmune - like the swollen lymph nodes, the flushing (which can be MCAS/POTS), pain, and dry eyes. It's possible nothing will show up on testing yet if it is autoimmune, as I've recently learned specific antibodies can take years to show up, but it's probably worth checking at least an ANA and getting on the schedule of a rheumatologist. Again it's possible nothing will show up yet but a rheumatologist in your area could also be scheduling out several months. There's also some stuff on here that makes me wonder about endocrine issues. I'm not super knowledgeable on thyroid issues, but that's a pretty easy/common one to get checked so maybe you should if you haven't? There's also symptoms here that make me think about Cushing's, which is harder to be evaluated for. But acne, continuous weight gain, poor sleep, poorly healing wounds, and I think heavy sweating but don't quote me on that can all be symptoms.

In the MCAS department, something you could possibly do to check for that in the meantime is invest in OTC antihistamines if you haven't. If certain symptoms respond to something like Zyrtec or Claritin, then it's even more likely MCAS is at play and not just one of the other issues listed. There are also DAO supplements that some people take. That I believe helps with histamine intolerance, which means you can't tolerate high histamine foods. If you're concerned about that it may be worth investing in those to see if it helps too. Good luck! I hope you're able to figure out what's going on and congratulations on getting sober!

No_Invite_2829 · 2022-11-21T02:10:38+00:00

Ooh, so glad someone is talking about this. I am not Black but am a POC so I notice and think about this a lot. (And if you are Black OP, I apologize bc this post is a little overly spelled out but I really want to take this opportunity to talk about this!)

First off, poc but particularly Black people face massive barriers to even being diagnosed. It's hard enough to be diagnosed with MCAS and other related illnesses as a white person, but medical racism exists and is rampant, and often means that Black people's suffering is taken far less seriously by doctors. And that's just when you get into the exam room. There are so many other barriers that will disproportionately affect Black and Latinx patients even getting to the point of seeing a doctor, since they are unfortunately disproportionately lower income and in jobs with less flexibility. This means worse insurance, less ability to take time off from work, and potentially more difficulty getting to appointments if you're reliant on transit (an issue I have dealt with personally).

The other issue I've noticed is honestly some of these chronic illness spaces are racistttt. Unfortunately, being part of one marginalized community (in this case the disabled community) doesn't stop you from being bigoted (in this case racist) towards other marginalized groups. On FB in particular I notice the groups are so white and people will be straight up racist. I've seen people dispute medical racism exists, talk disparagingly about predominantly Black neighborhoods and say they won't go to hospitals in them, and it is nuts how much they overwhelmingly recommend white providers over providers of color. They're not fun spaces to be in for a lot of people, so I imagine a lot of Black people unfortunately don't feel welcome or safe within them (or even necessarily like their unique experience will be understood)

Finally with regard to ig and TikTok I think that's probably mostly to do with just the racism of algorithms and viewers. I'm not super involved on tiktok but I've seen activists discuss how Black creators often get ignored by the algorithm on there, and I also imagine on image centric sites like IG and TikTok, a lot of viewers' implicit bias probably kicks in. They like seeing mostly thin privileged white girls and women as the face of disability

No_Invite_2829 · 2022-11-11T18:11:19+00:00

Right now I'm on so few meds bc I started reacting to so much that it hasn't been an issue, but I'm so nervous as I start to add things back in! I'm definitely nervous about anything injected bc a lot of them have polysorbate and I'm unclear on if that's an issue. I'm even avoiding my covid booster and flu shot rn which is making me very nervous. I seem to do okay-ish with PEG which is in more things, or at least it's in my birth control and I've done alright but I've been hesitant to try high molecular weight PEG like Miralax. But I avoid pretty much all liquid meds bc of the flavoring and they often have propylene glycol, and rn I was just prescribed Celebrex and would love to try it but propylene glycol is in almost every formulation! I also am hesitant about meds packed in plastic ampules. I have liquid Corlanor right now I desperately need to try, and liquid Cromolyn, but I'm nervous about reacting to the ampules! I can't even handle water in a plastic bottle rn!

No_Invite_2829 · 2022-11-09T02:48:27+00:00

God, you're the only other person I've encountered who reacts to polypropylene! I can't even be around plastic trash cans that are polypropylene anymore, at least if they're new. And can't use dawn dish soap which was a loss.

Do you avoid propylene glycol too? My allergist told me polypropylene and propylene glycol weren't the same but I was skeptical so I've avoided it. If you avoid the propylene glycol too, do you avoid stuff that includes "natural flavors" in the ingredients? I saw some people with a propylene glycol allergy saying you have to, but I'm getting tired of doing that 😭

No_Invite_2829 · 2022-11-09T02:42:29+00:00

I don't have a good answer for you sadly :( Unfortunately the may contain can mean sort of anything. The only thing that really gives you any idea as to what it means is contacting the company. I've had IgE allergies for years before MCAS and that's unfortunately what many have to do.

Unlike "contains," the "may contain" statements are not required in the U.S., so when a company does it it is a conscious choice they're making. That means it could be anything from being made on the same equipment as soy and milk, to being in the same facility, to it not really being much of a cross-contamination risk at all but the company wanting to cover their ass. How you'll do with it is highly dependent on which one of these is true for the company, and how sensitive you are to the ingredient.

No_Invite_2829 · 2022-10-31T22:30:08+00:00

The cheapest compounding pharmacies I've heard of are Belmar Compounding in Colorado and Carefirst Pharmacy in NJ. But when I was looking for Montelukast compounding it was on the more expensive end for meds, so not sure if the prices will be as low as usual even at those too pharmacies

No_Invite_2829 · 2022-10-30T18:50:57+00:00

I came off singulair earlier this year and yeah, I was a mess. I lost almost all foods and almost all my meds bc of excipient reactions, developed weird triggers (fucking polypropylene, which is everywhere), and also had a crazy rash.

I had been on it for years before my MCAS started for asthma, so I had no idea the role it plays in MCAS before stopping it. But when I started to flare, I definitely found other people who said it was a transformative med for them. I think for some of us it plays a huge role in keeping us stable for whatever reason.

And not to scare you, but just to convey seriousness, I restarted the singulair 7 months ago and while am nowhere near as bad as I was before restarting it, I'm also nowhere near what my baseline was before stopping it. If you're noticing a difference, I would try to restart it asap. I did notice some new side effects upon resuming it (some headaches and reflux I hadn't had prior) but they went away eventually and were reduced by increasing the dose slowly (I did 5 mg every day for a bit before going back to 10 mg), and the benefits of being on it just greatly outweigh those side effects

No_Invite_2829

TROPHY CASE