What makes a good dream team?

Providers who “get it” and are knowledgeable about MCAS are helpful – but the most important factor is finding a provider who is willing to listen and learn with you and perhaps to do a little extra research or reading on their own.

The wait list to see the few well-known experts in MCAD is long and there are often extensive out of pocket costs involved, plus travel. The best method is to find a local ally that you can follow up with regularly. This could be a primary care doctor, allergist/immunologist, hematologist, functional medicine doctor, or other specialist, depending on the scenario.

In addition to finding someone who can address the diagnosis of MCAS and the pharmacological aspects of MCAS care, the team should encompass relevant specialists depending on the patient scenario. Some patients also need medical management of co-morbid conditions or symptoms, so the inclusion of a cardiologist, gastroenterologist, urologist, gynecologist, and other specialists is definitely warranted.

Outside of these core mainstream medical practitioners, I am a firm believer that every patient with chronic health issues should also regularly see a naturopath and/or functional medicine doctor. These specialists are like detectives who go to work evaluating things that most mainstream medical tests will not pick up on. In my personal experience, most functional medicine doctors and naturopaths have heard of MCAS. (Or, maybe I’ve just been unusually lucky!)

A naturopath is someone who attempts to provide the body with what it needs to heal itself. Herbs and homeopathy are sometimes utilized once underlying root issues have been identified. Their practices are based on identifying and treating the cause, tapping into the healing power of natural substances, treating the whole person, removing obstacles to healing/recovery, and prevention.

A functional medicine doctor is someone who has more of an integrated blend of Western medicine and natural medicine. These doctors often search for “less mainstream” diagnoses like Lyme disease, Epstein-Barr virus, and other conditions, and may use conventional means of treatment or a more natural approach, depending on their supplemental training. Their practices are based on science-based medicine with attention to genetic and environmental factors that influence disease.  Generally, these providers were trained in the traditional medical system and have since developed an interest in pursuing other aspects of medicine.

Both naturopaths and functional medicine doctors have an evidence-based approach that is centered around the patient as whole person, with the ultimate goal of restoring vitality (vs. removing disease). These practitioners embody a cause-based approach as opposed to putting a band-aid on symptoms.

Addressing root issues that could be secretly triggering mast cells (such as viruses, bacterial infections, thyroid abnormalities, celiac disease, exposure to environmental toxins like mold and heavy metals, parasites, etc.) may not “cure” the patient of MCAS but will likely have a positive impact on their quality of life, level of symptoms and medications necessary to control it.

In my personal example, despite having monoclonal MCAS, after just 6 months of care with a naturopath, I was able to go from 6 different mast cell-targeting medications and supplements (including prescriptions) three times a day to just one over-the-counter supplement taken twice a day. This was after over 20 years of being on daily antihistamines! My anaphylactic reactions halted and I have no doubt that my dramatic improvement in function and minimal need for pharmacological intervention is due to the progress we made in addressing my underlying root issues and giving my body what it needed to start on the path to healing.

Anecdotally, many patients exhaust all mainstream medicine options before considering the more alternative/natural routes of care. Some patients put off the advice for a naturopathic approach for years and then may regret not instigating such care sooner in their healing journey. (This was certainly my case!) Thus, in the early stages, once one has a stable baseline of health achieved after the diagnosis of MCAS, it’s recommended that the patient investigates and addresses a number of underlying factors that could impact the degree of mast cell activation they are experiencing.

The down-side is certainly cost, as most insurance plans don’t cover naturopathic care, and some may or may not cover functional medicine doctors. It’s helpful to keep in mind that over time, the costs you used to spend on drug management of symptoms may eventually surpass the fees for naturopathic type care visits. And the gains in quality of life may be priceless.

There’s also plenty of value in pursuing care for the management of pain. Acupuncture, massage and physical/occupational/speech therapies are commonly trialed by patients with MCAS, depending on patient tolerance to things like mechanical pressure and needles. Some patients find relief with other types of therapies including essential oils/aromatherapy, lymphatic drainage, colonic hydrotherapy and patient or injury-specific yoga or Pilates (or other group exercise) classes.

Different forms of psychotherapy can assist the patient in releasing past trauma, developing healthy methods for stress management, and reducing anxiety/depression. While MCAS is not a “mental” disease, the reality of living with it can certainly add a heavy burden to one’s mental health, and proper mental health care should be a huge priority.

Nutrition is a key aspect of healing, and all patients with MCAS should be encouraged to modify their diet carefully with the help of a licensed nutritionist. It may be useful to seek e-medicine for a nutritionist consult to ensure that the specialist is well-versed in MCAS. Heidi Turner and Rebecca Snow are two well-known nutritionists who have done public speaking and education about MCAS-specific dietary considerations, and it appears that they both do phone/internet consults.

Heidi Turner: http://www.foodlogic.org/

Rebecca Snow: http://rebeccasnow.com/

Don’t Break the Bank

I realize that commenting on “money-saving” options is a bit absurd considering the reality that most patients face by the time they are diagnosed (and the dozens to hundreds of medical providers they’ve likely already seen at that point)… but bear with me. Here are some tips that may assist in getting the care you need:

  • Seek out local non-profits that may cover certain numbers of visits with their team.
  • Some types of group therapies may be available at a reduced cost.
  • Massage schools offer reduced rates and as long as you’re willing to be vocal about what you’re looking for, they can be a great option.
  • If mental health services are not covered by insurance, there are some new apps out there that allow you to connect with talk therapy services from your mobile phone or computer at a fraction of the cost.
  • Be up-front with providers about your budget and ask for tips and tricks for things that you can do on your own at home between sessions. (Physical therapists love patients that are motivated to do home exercises!)
  • In some cases, patients may be able to learn how to do certain types of therapies (such as colonic hydrotherapy, acupressure and trigger point release, tension and trauma release exercise, binaural beats, and lymphatic drainage, for example) on their own at home. Always make your intentions and goals known to each provider from the get-go so that you can be learning strategies for self-management as you go.

 

What Works for You?

Who is on your team? Did I miss an important component of the MCAS Dream Team? Please add a comment below with what works for you!

 

This content is Copyright © Mast Cells United and is not intended to diagnose or treat anyone. Always consult your medical professional for any health guidance or advice.

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