1) I'm treated by a "familiar provider" like described on that page, but how do I know if/when I need to see an actual "specialist?"

The overwhelming majority of patients will be well served by a practitioner of any kind who is willing to learn about the disorder, pursue appropriate diagnostics, monitor the patient's symptoms, and treat them accordingly. In the case of SM, however, in order to monitor marrow and any changes in staging, this will need to be done at least with the assistance of a qualified hematologist. Most patients don't need a “specialist.” They don't need someone researching. They don't need someone publishing. They don't need someone with thousands of other mast cell patients. As you go through the process of finding the right treatment plan for your case, you might think of seeing a specialist if you find that you've exhausted the baseline and second line treatment options (by "exhausted," I don't mean base doses of these things, but the doses that are appropriate for you case. I meet a lot of people who have "exhausted" their H1/H2 a couple times a day, for example, and either have not tried others or have never been told to increase these, and the same with other drugs.) and need to consider third or particularly fourth line therapies, feeding tubes, TPN, or regular medications delivered intravenously. Your general or other practitioner may feel less comfortable in these areas, whereas a specialist who sees many patients like you will have more experience with helping to choose and monitor these kinds of treatments.

2) I know tryptase isn't usually relevant to MCAS diagnosis. So why is my provider wanting to test my tryptase? Is this a red flag that they don't know what they're doing? Someone told me so.

If your provider thinks you don't have MCAS because you have low tryptase, whomever told you this is right. However, it's strongly recommended to test tryptase anyway...not because it's always relevant to MCAS diagnosis (Sometimes it is. A slight increase with symptoms or decrease without in an otherwise normal tryptase level can be one way to help confirm this.), but because it's very relevant to ruling out certain forms of SM and some other conditions which can cause similar symptoms. Depending on your level, it might be important to test tryptase multiple times to better identify your baseline. This is just a blood test that you can have drawn at the same time as your regular or other recommended bloodwork.

3) Which of these is most likely to be able to help me: a GP, a hematologist/oncologist, a dermatologist, an endocrinologist, a cardiologist, an allergist/immunologist, a pulmonologist, a gastroenterologist, a functional doctor, or an ENT?

Unfortunately, with MCAS, none, some, or all, depending on which providers in each of these areas you find. (See the page on finding a medical provider.) For cases of SM, you will need a qualified hematologist/oncologist.

4) How can I prepare for an appointment with a new doctor?

Since it's easy to forget things and mast cell disorders can present with so many seemingly unrelated symptoms in different organ symptoms, it may be helpful to create a list or timeline of symptoms and anomalies in your medical history from birth on so you are not struggling to remember these when asked. What medications you have tried, what medications you have struggled to tolerate (and what was in these medications), what triggers you have identified (all kinds, not just foods), and what seems to help are also all important information. I don't like talking about this as “preparation,” but it's also important to be prepared for the statistical likelihood that your new doctor does not know enough about mast cell disorders to be able to competently evaluate, diagnose, or treat you. This (probably) isn't because they're a bad doctor, and they may very well prove to be an important member of your medical team for other reasons, but try not be discouraged if they turn out not to be your best contact for mast cell needs. Also see the page on support groups and doctor recommendations received there.

5) I've finally found a specialist who offers comprehensive testing and treatment plans and has all the right information on their website, so I know they know what they're talking about. They might have given/sold me some other things, too, but they recommend some infusions of mast cell treatment meds (say, for example, quite common IV meds like diphenhydramine (Benadryl) and benzodiazepines) to “kick start” things and make me better long term. If you can make people better faster and actually "turn off" the disorder by giving IV infusions of these meds, why do you keep recommending the same old complicated processes with drugs, supplements, lifestyle changes, and all that day in and day out? Don't you want people to just get better, now? Also, I met someone online who saw this provider and had a reaction to/after an infusion. It was just Benadryl or whatever! (see the following list of ingredients with methylparaben) Do they have a psychosomatic case or what?

1. Because you can't. That's not how these drugs work. The half life of diphenhydramine varies by age, but it's a matter of hours. Benzodiazepines have different half lives depending on the drug, and they're typically given in very low doses for mast cell uses (which is to clarify that I have no idea where these numbers come from. Perhaps a decimal point was moved? More is not better. This is not a cowbell situation.). These drugs, often in IV form, are both essential rescue medications for patients experiencing serious reactions and are regular medications for some patients, as well. What does taking them when you're not having a reaction do? Well, ideally, nothing at all. There's nothing for it to help at the time. (Less ideally, it contributes to tolerance...which is why it's usually recommended you do not use them if/when you don't need them...risks reactions with tubing or other ingredients, risks these and other, sometimes more complicated problems with benzodiazepines in these doses, and so on). Receiving them in an IV doesn't make them magically keep working, calming reactions in the days, weeks, months...afterwards (because I've gotten this question with a few very different timeframes suggested between treatments which do not immediately appear to be related to symptom severity or to anything else I can identify. I would hypothesize that greater frequency is correlated with greater ability to pay and travel to this “specialist's” clinic. None mentioned being told to simply visit their local emergency rooms to receive the same drugs, which it looks like would ultimately prove less expensive.).

2. Had you not mentioned that methylparaben (preservative), I'd have asked if perhaps the diphenhydramine were pushed too quickly (because if we're giving this provider the credit of being honest, if they don't know on a basic level how the med works, I can't imagine why we should expect them to know how to administer it), if there were issues with tubing, with the benzo, with....but you know, that preservative does just seem to want to jump out. (Am I such a hypocrite, then? You happen to know that I keep Benadryl on hand! Is mine preservative-free? I hope I'm not a hypocrite, and why, yes, it is, and for good reason: I'd expect a great number of mast cell patients to be reactive to methylparaben.)

But why would they offer this service, then? Setting aside my fussbudget concerns about doing harm (tolerance/risks), because these are mast cell medications (ignoring HOW and WHY and WHEN they're effective, appropriate, and so on), this is not illegal, and...respectfully, because you were willing to pay them (a lot) to do so.

6) My provider thinks I have a mast cell disorder and wants me to start mast cell treatment, but only after “detoxing” so I'm more stable and will tolerate it. Why do you list them as run-like-hell-away-from, non-familiar provider?

First, what do you mean by detoxing? Are you needing to remove mercury amalgam fillings? Take out an implant that's a problem? Sweat more? Take some supplements to support your liver or kidney function that's struggling right now? Transition to a cleaner diet? What will you almost certainly need to do the first two safely, and what might improve the likelihood of the latter three going smoothly if you actually have a mast cell disorder? (Hint: It's treating your mast cell disorder.)

More importantly, it seems there is a basic misunderstanding about how the process of detoxification works in the body that is peddled by shady practitioners selling things. (I leave out legitimate, responsible practitioners selling a variety of therapies because they want their patients as stable as possible, having investigated and as much as is possible addressed all other causes for their symptoms, before beginning the “detox” therapies they use. The insist on this because they know how these therapies work.) Some basic information about detoxification: Your body is designed to detoxify itself. Sometimes, it needs help. Most of the time, it needs you to just stop toxifying it. Some people with certain genes need, for example, extra methylation support. Some people need to remove dental materials they don't tolerate or teeth on which root canals have been performed that are maintaining an infection. The same goes for some people with other implants and medical devices they do not tolerate or which are leeching into their bodies. Some people need to treat infections. Probably most people need to change their diets to some extent, their laundry detergents, their cleaning chemicals...but when the source of the “toxicity” is removed, the body will detoxify itself of all of these things, in many cases over a relatively short period of time. What determines this? What the body is able to do safely, because your body knows what it's doing in terms of detoxification. It's been doing it for you every day since before you were born!

There are a variety of ways to help the body do this on its own, safely, which may be useful to your particular. What are these? They're things like first, eliminating problematic foods and products in your home and environment (this list is too long for the whole website), drinking plenty of water, and appropriately treating your medical conditions in order to allow your body to function optimally. This may involve things like treating a mast cell disorder, addressing vitamin and mineral deficiencies, managing diabetes properly, and so on ad infinitum. (Unexpectedly, almost every patient I have met who has used the word “detox” has skipped this, having heard there is something easier they could do, instead.) There are also other ways to support the body in this process, things like using certain herbs that can help liver and kidney function, sourced carefully and started slowly and responsibly, infrared frequencies and baths that help to detoxify through the skin, among many other things that make you sweat, and so on, that may be useful to a patient's overall health when they are not contraindicated for other reasons (Remember that many mast cell patients have problems with many of these herbs, many are heat intolerant, reactive to sweat, and so on.) and, again, when things like mast cell disorders are as stable as possible beforehand. Why? Because even the responsible kinds of detoxification-pushing when these things are tolerated are hard on the body. They “stir things up,” as any good functional doctor will tell you, and you need to be as stable as possible if detoxification is going to be either effective or safe for you.

Sadly, that's not the kind of “detox” most people ask about. They ask about coaches that push “cleanses” and fasting for a week and various and assorted proprietary diets that show a fundamental misunderstanding of basic and frequently for some reason of ancient human biology, about “shotgun” chelation therapies and laxatives and colonics (per “big” triggers, if it's not a phenergan suppository and you want to put it up your fanny, it's almost always a very bad idea for a mast cell patient), about imbibing high dose herbal cocktails and vitamin IV's and chlorine (“Miracle Mineral”) and magical waters and corrosive agents to kill your “parasites” and...this list doesn't have an end. So far, none of the “special” or warp speed “detoxes” I've been asked about have had any legitimate research supporting their use and frequently have serious evidence that indicates they are in fact quite toxifying without the de-...but even if they were successfully pushing a warp speed detox and this were possible in your body, a “fast” detox of ANY real kind is among the hardest things you could put you body through. This is on par with perhaps the “worst” chemotherapy drugs in terms of both collateral damage and physiological stress. So if you worry you're not stable enough to tolerate any mast cell treatment (I haven't yet met or seen evidence of the existence of one of these patients, by the by, and I strongly recommend taking a closer look at treatment lists and compounding/delivery of these meds.), it's safe to say your body certainly isn't stable enough to safely "detox." If your liver or kidneys (important detox "pathways") are impaired and you're suffering from an untreated mast cell disorder, you're in good company; mast cells behaving badly and causing inappropriate reactions have a knack for stressing kidneys and livers. Preventing further damage like this or allowing these to heal (so you can detox) is one of the reasons mast cell treatment can be important.