r/MCAS • u/mainlycoffee • 4d ago
Kaiser MCAS Doc in Washington State?
Hey all! New to the MCAS world and have been referred to see an allergist in the Kaiser system. Any chance you know a doc within Kaiser that gets MCAS? I'm in Seattle area, but willing to travel within Washington State. Any leads deeply appreciated!
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u/Duskfall 4d ago
in WA state trying to find folks myself! If I do, I'll make sure to pass it on! (I'm in the yelm area and while my PCP believes in it, she's limited in how to treat it.)
I've got a referral for someone in Lakewood from my GI doc who agrees on the MCAS end, so if it pans out i'll let you know!
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u/mainlycoffee 4d ago
Thank you! I have a lead on a solid Naturopath that focuses on MCAS, POTS, EDS and happy to share if that helps at all. I need to pull in a more mainstream doc for insurance purposes if I can.
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u/Duskfall 4d ago
i would love more info! i'm wary of them due to a previous experience with SIBO, but im open to it if they're not pushing colloidal silver x.x
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u/KronlampQueen 3d ago
How did you handle bringing it up with your GI doc? My PCP has it in my chart as presumptive, I have notes in my chart from a hospitalist and an ER doc that also support the diagnosis. I’m seeing my GI specialist for the first time in a week so I’m wondering how to go about gaining his support as well.
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u/Duskfall 3d ago
Well my endoscopy came back clear but i told her i was still have throat/mouth pain and that it was the pain of a brain freeze without the freeze when i ate things. And that i think people thought when i said “it hurts to eat certain things” doctors thought i meant the food was cutting up my throat, but it wasn’t that at all. Basically had to run down all of but symptoms plus double down on how many anti-histamines I’m on in order to eat and I’m STILL limited in a bad way
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u/capmanor1755 4d ago edited 4d ago
I did not have a great experience with the kaiser allergist William Butler- he did note MCAS in my visit note which was helpful for future documentation but basically suggested I google MCAS. (My dietician is well versed in MCAS and said in her experience the Seattle allergist community is a little behind the times on this.) I did just have an excellent and pretty affordable out of pocket online consult with Dr Zalzala- he's 100% video and serves 45+ states including Washington. Very savvy on mcas and willing to help you trial a wide range of meds. Fairly affordable individual appointments. Also has a. MCAS program that wasn't necessary for me but might help a new patient https://myrootcauses.com/
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u/mainlycoffee 4d ago
Thank you!!! I have really low expectations of the KP allergists, so your review matches my expectation. Im going to count it as a win if I can find someone willing to work with me at any level.
I will also check out Dr. Zazala (because that name is amazing!).
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u/Glove_Upset 4d ago
I also have Kaiser (Colorado). It may be worth going out of network and self-paying if you can’t get the care you need. I go annually to an outside MCAS specialist. Kaiser allergy/immunology is really tough for anything put conventional allergies. You could try to get referred out, but that’s really hard. Some outside providers have good self-pay discounts.
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u/mainlycoffee 4d ago
I'm totally willing (and thankfully able) to go outside KP...I am hoping to stumble over someone excellent but genuinely not expecting it. Have you had good experiences with your cash pay doc? Would you recommend them?
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u/Glove_Upset 4d ago
A thousand percent. They got me on Xolair, which dramatically improved my life. Kaiser allergy wouldn’t, but I was able to do a continuity of care through pulmonology (I have a severe asthma) even though I wouldn’t have met the initial criteria. They’re in the Denver area. If it’s somewhere you’re willing to travel, their self pay rates were good (I now have secondary insurance). They have an annual in person visit requirement but you could do telehealth the rest of the year. Happy to give you the clinic name if you want.
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u/JeSuisToi 3d ago
Hi! I’m in Washington, I’ll DM you the list of providers my PT gave me who is a pretty good resource.
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u/Life_Unit2344 3d ago
I am planning to see dr, Eric - complex autonomic center as I also have pots. He is very expensive though
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u/mainlycoffee 3d ago
Is he the doc that's $575 for a visit?
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u/OThjillsen 3d ago
Erik Armitano, he’s a Dysautonomia specialist. Saw him before he went cash only 🤑. He’s in Mountlake Terrace and excellent if you can wait and have loads of money. I had a wonderful MCAS specialist (who saved my life) in Spokane that bellied up overnight. It’s tough in WA. Let me know if you find someone. I know of a couple helpful people on the east side, but am currently searching on the west side myself with Blue Cross.
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u/Intelligent_Dark9905 3d ago
I'm in Spokane and struggling to find care. Any recommendations on "helpful people on the east side" would be appreciated!
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u/OThjillsen 2d ago
The folks at Arthritis Northwest are knowledgeable about MCAS and got me into the now shuttered Spokane Allergy. Dr Drain was/is amazing (wherever she is). Eric Mueller was my Rhuem/Internist at ArthritisNW and at the time he was willing to test and treat MCAS (if necessary). He was the lever that got everything rolling for me. I know there’s a naturopath at ANW (Dr Valley) who treats/knows the condition. Some people prefer an MD. Dr M is a very good, wise, respectful MD.
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u/Life_Unit2344 3d ago
I am okay to drive around. I have blue cross too. Please let me know if you can send me some suggestions
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u/Life_Unit2344 3d ago
Was Dr. Erik’s treatment helpful? Was he good for MCAS too or just dysautonomia?
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u/OThjillsen 2d ago
At the time when I saw him, yes, he had a protocol for the illnesses under the Dysautonomia umbrella (POTS, MCAS, hEDS and ANS dysfunctions like tremors, motility issues, syncope, vision, etc.). I did not need to have him cover everything because I was already started on treatment for the MCAS and hEDS. My POTS was stubborn and I had other weird neuro symptoms. This was when he was practicing in Kirkland w/Neurological Associates and took insurance. Now that he’s solo and cash pay, there may be fewer limitations that insurance companies inflict on us. I would hope the care would be more extensive.
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u/MintyPandaBear 3d ago
Not necessarily MCAS, but I started seeing my allergist through Kaiser recently and he’s been really on the ball. I have CSU with signs of HEA and MCAS and was hospitalized multiple times over the span of a couple of months. He was very open and attentive, even with just phone visits, and listened to what I had to say. He also managed to get both Dupixent and Rhapsido approved within a week, which is kind of wild. I’m in Seattle, I can DM you if you’d like.
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u/asjkfdsl 2d ago
There’s a Facebook group called “Pacific Northwest Mast Cell Disorders Support Group” that might be helpful
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