How I Was Diagnosed with MCAS | Mast Cell Activation Syndrome Diagnosis, Criteria, Symptoms, Testing

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✩ 25% of all proceeds go to the Bartonella Project at the North Carolina State University College of Veterinary Medicine. To donate directly to the Bartonella Project, donate via this link through the Bartonella/Vector Borne Disease Research Fund:

I tell my story of how my doctors suspected mast cell activation syndrome (MCAS) by my symptoms, the types of testing used to support my diagnosis, diagnostic criteria, CD 117 staining, and more!

Resources mentioned:
*Weinstock, L. B., Pace, L. A., Rezaie, A., Afrin, L. B., & Molderings, G. J. (2020). Mast Cell Activation Syndrome: A Primer for the Gastroenterologist. Dig Dis Sci.

More mast cell resources:
Afrin, L. B., Butterfield, J. H., Raithel, M., & Molderings, G. J. (2016). Often seen, rarely recognized: mast cell activation disease–a guide to diagnosis and therapeutic options. Annals of medicine, 48(3), 190-201.

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Mast Cell Activation Resources:

High quality journal articles on bartonellosis:
1. Giladi, M., Maman, E., Paran, D., Bickels, J., Comaneshter, D., Avidor, B., ... & Wientroub, S. (2005). Cat‐scratch disease–associated arthropathy. Arthritis & Rheumatism, 52(11), 3611-3617.

2. Maman, E., Bickels, J., Ephros, M., Paran, D., Comaneshter, D., Metzkor-Cotter, E., ... & Giladi, M. (2007). Musculoskeletal manifestations of cat scratch disease. Clinical infectious diseases, 45(12), 1535-1540.

3. Maggi, R. G., Mozayeni, B. R., Pultorak, E. L., Hegarty, B. C., Bradley, J. M., Correa, M., & Breitschwerdt, E. B. (2012). Bartonella spp. bacteremia and rheumatic symptoms in patients from Lyme disease–endemic region. Emerging infectious diseases, 18(5), 783.

4. Breitschwerdt, E. B., Maggi, R. G., Mozayeni, B. R., Hegarty, B. C., Bradley, J. M., & Mascarelli, P. E. (2010). PCR amplification of Bartonella koehlerae from human blood and enrichment blood cultures. Parasites & vectors, 3(1), 76.

5. Mozayeni, B. R., Maggi, R. G., Bradley, J. M., & Breitschwerdt, E. B. (2018). Rheumatological presentation of Bartonella koehlerae and Bartonella henselae bacteremias: A case report. Medicine, 97(17).


6. Breitschwerdt, E. B., Maggi, R. G., Nicholson, W. L., Cherry, N. A., & Woods, C. W. (2008). Bartonella sp. bacteremia in patients with neurological and neurocognitive dysfunction. Journal of clinical microbiology, 46(9), 2856-2861.

7. Breitschwerdt, E. B., Sontakke, S., & Hopkins, S. (2012). Neurological manifestations of bartonellosis in immunocompetent patients: a composite of reports from 2005-2012. J Neuroparasitol, 3(235640), 15.

8. Breitschwerdt, E. B., Mascarelli, P. E., Schweickert, L. A., Maggi, R. G., Hegarty, B. C., Bradley, J. M., & Woods, C. W. (2011). Hallucinations, sensory neuropathy, and peripheral visual deficits in a young woman infected with Bartonella koehlerae. Journal of clinical microbiology, 49(9), 3415-3417.





Podcast with Dr. Bob Mozayeni and Dr. Ed Breitschwerdt:

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[BartonellaBabe]

✩ Thank you for supporting my hard work and my channel!

✩ 25% of all proceeds go to the Bartonella Project at the North Carolina State University College of Veterinary Medicine. To donate directly to the Bartonella Project donate via this link through the Bartonella/Vector Borne Disease Research Fund:

[roonbooks]

I like the fact that you added humor...I'm severe, you humor helps me

[NoSubtext]

I'm so sad you are gone, Jake. You've helped me so much 💔

[adrianajoy]

Loving this FUN VIDEO to explain what I'm learning about my 14-year-old son's journey. Thankful for the laughs and intelligent conversation! All the best!

[carolashlee]

I am in Australia and can not get a proper diagnosis
I have been in the ambulance countless times.
My Doctor is understanding and trying her best to help.

[wanpijid]

I was just looking at EDS video then came across MCAS. I am seeing a rheumatologist for EDS evaluation but heard that MCAS is seen a lot with EDS. So I am seeing an allergist for MCAS evaluation as well. So frustrating to have a scroll of symptoms for 13 years (3 main attacks) and no answers except ….”maybe anxiety”….

[metanoiabooks]

If its life threatening how can I get the meds quickly. They won't medicate me without results. I'm 5 months into this hell.

[ashleywinter]

Hi jake! I just spent a couple hours in urgent care becuase I was just vomiting up water/pedialyte today *they gave me a migraine cocktail so I'm all better now. The more I think about it, the more MCAS seems more likely for me (random rashes that dermatologist can't distinguish/diangosis, reacting to medications I've had no problem with before etc.). I had an endoscopy done a year ago, but that was only to test for celiac, they didn't take any other biopsies for testing/MCAS wasn't on my radar then. Just wanted to say thank you for all the great info! Hopefully can get a diagnosis for what is going on soon (neurologist thinks I have POTS which could be related to MCAS).

[dan__________________]

What MCAS meds do you take? Cromolyn?

[chronicallycrocheting]

Excellent video. I am curious how you got Dr Afrins email address? I would love to email him. Thank you for any help.

[ladyirish]

I just found your video. I just did blood work today for MCAS and I have to do a urine test for Neuroendocrine tumors. What is your treatment for MCAS?? I just started Zyrtec and Allegra. Thank you for sharing your story!

[LaGatitaG]

I had 2 endoscopy, but my doctor never counted anything. First one my stomach was inflamed and was diagnosed with gluten sensitivity. The second one my esophagus had no inflammation, it was red and no gluten sensitivity, but still having issues with lots of foods.

[juliaraymer]

Have you tried the Dynamic Neural Retraining System (DNRS)? It's supposed to help MCAS and it's very non-invasive.

[partapsingh]

A friend of mine was diagnosed with mcas years ago....just weeks ago some doctor suggested that it could be mastcell leukemia..dang, we were greatly depressed...but fortunately the reports were negative🤞🏻just wish she remains healthy....i'm still worried btw...i keep praying all the time🤞🏻

[Janarae]

Is there any place to find providers for this ?

[Tinyteacher]

Thank you! I don’t know how you keep up such a great attitude when you’re sick and hurting! You’re the best!
You’re the only one my son, 35, will watch, and he has mold toxicity, Bartonella and probably Babesia. I’m thinking he has mast cell as well.
Any doctors you can suggest in Michigan? Thanks! 💕

[steffancardona]

My tryptase is absolutely elevated - is this a no questions asked case MCAS diagnosis then or could it be elevated for other reasons?

[SatumainenOlento]

Anybodybusing the carnivore/low-histamine diet to help with MCAS?

[metanoiabooks]

I've had it for 5 months and it's made me so unwell. My heart is the main symptoms the blood pressure part is scary. So I'm going to try flush it out and low histamine diet. Is there a way to settle or quickly. Other than chicken and rice. And vitamins..

[melissacameron]

I’m dealing with this right now and keep getting bounced between doctors this has been so miserable 😩