How I Was Diagnosed with MCAS | Mast Cell Activation Syndrome Diagnosis, Criteria, Symptoms, Testing
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- Опубліковано 29 сер 2024
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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:
*8 part blog post on CD 117 staining: www.mastattack...
*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.
*Afrin, L. B., Ackerley, M. B., Bluestein, L. S., Brewer, J. H., Brook, J. B., Buchanan, A. D., ... & Dubravec, M. S. (2020). Diagnosis of mast cell activation syndrome: a global “consensus-2”. Diagnosis, 1(ahead-of-print).www.degruyter....
*Valent, P., Akin, C., Bonadonna, P., Hartmann, K., Brockow, K., Niedoszytko, M., ... & Butterfield, J. H. (2019). Proposed diagnostic algorithm for patients with suspected mast cell activation syndrome. The Journal of Allergy and Clinical Immunology: In Practice, 7(4), 1125-1133.www.jaci-inpra...
More mast cell resources:
Never Bet Against Occam by Lawrence Afrin: www.amazon.com...
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.
Facebook Support Groups:
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Inquiries: jakethebartonellababe@gmail.com
Mast Cell Activation Resources:
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www.mastattack...
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:
tmgmd.com/907-...
Best diagnostic testing:
www.galaxydx.com/
→ SHOP MY MERCH HERE: bartonella-babe.creator-spring.com
✩ 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:
securelb.imodules.com/s/1209/giving/plain.aspx?sid=1209&gid=214&pgid=3813&cid=6343&appealcode=LB000278&dids=3869&bledit=1&sort=1&fid=6343
Did you notice any body odor or bad breath from the digestive issues??
🙏 RIP
I'm so sad you are gone, Jake. You've helped me so much 💔
I like the fact that you added humor...I'm severe, you humor helps me
Thank you so much! I have to entertain myself over here somehow or else it would be too bleak. Thanks for appreciating the humor. Some assholes have said it makes light of the illnesses and that couldn't be further from my mission
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.
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!
Aww thank you! And all the best to you too ❤️
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”….
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.
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).
Can I ask what was in the migraine cocktail? Just curious! And it sounds like MCAS could definitely be a possibility for you, which you're right, does have links to POTS as well as EDS and Bartonella/other chronic infections. Make sure to get to an MCAS literate doctor (many Bartonella literate docs are also MCAS literate too) and don't worry about the GI biopsies unless you have to get another endoscopy, then they might as well do the CD 117 staining while they are there
@@BartonellaBabe migraine cocktail (for me at least): iv saline fliuds + toradol (pain relief) + zofran. I was sent home with toradol, more dissolving under the tongue zofran and phenergan (treats allergies, motion sickness, control pain, naseua and vomiting, was told it can make you tired as it is an antihistamine).
I will be bringing up MCAS to by neurologist who is doing the POTS testing, as well as my current lyme literate doctor. It seems to make the most sense for me (I think for me in the present it's more of a reaction to medications/environment than foods im ingesting unless im having a really bad day like today). Also to your point in the video about getting a diagnosis based on different questionaires/diagnostic criteria, I am going to send the send second link above to both doctors. Thank you! :)
@@ashleywinter6217 that sounds like the perfect IV cocktail! Glad they gave that to you. Also, sounds like you have good docs if you feel comfortable sending them literature so that's good too! ❤️
@@ashleywinter6217 Is nausea and vomiting your primary symptoms? I've been fightin nausea and vomiting every day all day for the past 5 years and all my tests come back normal! I can hardly eat anything as a result. Would appreciate a conversation if you're up to it.
@@TheDefiasBandit hi just seeing this now, yes nausea and vomiting has been very persistent for me. I take the dissolving zofran that goes under your tongue twice a day this works for me and I am now medicated for POTS which I was diagnosed with in december 2020. I have not explored MCAS more because of covid restricting how much care I can get, but eventually I'd like to cross that bridge.
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🤞🏻
That sounds very scary! I’m glad the reports were negative. Mast cell leukemia is rare so at least you have that on your side 🤞
@@BartonellaBabe her mastcells keep bugging her all the time...even her infusions are over since last week....uk her fever n stomach keeps annoying her mostly.......i just wanna know will she be fine someday...or atleast will it get better although its chronic?🤞🏻
And thankyou so much fr answering🙂🤞🏻hope you are fine too
@@partapsingh5239 You just have to keep trying mast cell medications to hopefully get more stable. That's the goal
Love your eye make up
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! 💕
Yes Lloyd you are definitely too legit to quit!!!
I thought I had seen a doc recommended from that very state recommended in the sidebar conversation on the right hand side of ua-cam.com/video/cX6uZKInI7c/v-deo.html which I just watched . I took a quick look and couldn't find it, but maybe you can. Sorry, but mcas leaves me with little energy
@@dawnsimpson7434 Thank you so much, Dawn!
I totally understand your being tired and sick, because not only is my son in great pain and has every symptom of Lyme co-infections, but I was extremely ill for over 15 years from breast implants and mold toxicity, and I had to retire early from my beloved teaching career. I had NO idea what was wrong with me, but I bet those surgeons knew!
Now, I think I have a Lyme disease because I was bitten and got sick again a year after I moved and volunteered at a Children’s garden. I had to haul moldy compost with broken glass in it (for a Children’s garden?) and was stung by bees and other insects. It started a 6 month flare of the RA that I had been I diagnosed with, along with a bunch of other autoimmune diseases before I got my implants removed. I haven’t felt right since then. I’m fatigued all the time and sick in the afternoons along with the chronic pain, and a sore throat and fever. It’s the only thing I can think of as to why this weird illness has popped up in me. I took pics of my bites.
However, I think God gave that mold toxicity to me so I could recognize the symptoms in my son when he came to stay with me during the days, because he had tried to take his life. It’s possible he’s had one if these since he was 7 and had meningoencephalitis, and it took the entire summer after the beginning of May to recover. When I had him tested for mold, he tested positive for Bartonella and Babesia. I knew nothing about this, but it seems like hell!
His father still has not had his house remediated, and this was two and a half years ago!
You poor thing! I am going to pray for you, and all who have this, especially unknowingly! Can you imaging not knowing what was wrong with you and ending up homeless or in jail (which my son has, despite it being a mental illness of “disorderly conduct”. I feel like sending his diagnosis to the judge who put him in jail because he had done something else before, but I forget what now. Do they ever think these behaviors are due to physical illnesses? What a broken medical system and a corrupt political society. 😢
I’ll check that out! I do appreciate your reaching out! 🙏💕💫
Was biopsy hurtful?
Have you tried the Dynamic Neural Retraining System (DNRS)? It's supposed to help MCAS and it's very non-invasive.
Julia Raymer I haven’t. It doesn’t resonate with me but if it resonates with you, then it seems worth a try 🙂
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.
sorry to hear of your GI issues. They can be so debilitating!
Dr Afrin is awesome
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!
I unfortunately reacted to many, many MCAS meds but I do very well with Benadryl, Pepcid, and low dose Valium and I take all of those multiple times spread out throughout the day
Excellent video. I am curious how you got Dr Afrins email address? I would love to email him. Thank you for any help.
Is there any place to find providers for this ?
Yes. If you go onto MCAS Facebook groups you can ask for recommendations of doctors in your area who know how to diagnose and treat MCAS
The WAP part lolol. I am pretty sure I have MCAS. I actually started a therapy last year called BVT (bee venom therapy) for Lyme, and I think it triggered MCAS for me. I eventually quit but am still dealing with throat symptoms (feeling of swelling from the inside), especially if I eat certain foods. Quercetin maybe helps sometimes? I would love to see what you take for MCAS. I have Cromolyn, which I plan on trying to take more consistently soon to see if it helps. I did a test called the GI Map a few months back, and I have SIBO/h pylori, so I'm pretty sure my gut is involved in my food reactions. And I have a history of mold illness, too. Good video -- you're very articulate!
Yay WAP appreciation!! Lol. My mom made the WAP suggestion and then instantly regretted it and I was like "I'm doing it!!!!" I've had a hard time with my MCAS but most people start with H1 and H2 blockers and then build on that if they need more mast cell help. I take Benadryl, Pepcid, and Valium but have tried and reacted to so, so many other mast cell meds, unfortunately. My next try is probably going to be Xolair. I have a treatment for MCAS video on my channel that goes over the basics (including cromolyn and quercetin) and I talk briefly about how each of the meds went for me
Brilliant video! Really informative.
I can't roll my R's either 🤣🤣
Thank you so much!!! And it's so hard! I've given up lol
I’m dealing with this right now and keep getting bounced between doctors this has been so miserable 😩
Have you been told you have IBS? I have but I don't . I believe IBS is being misdiagnosed and it's likely MCAS
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..
Do you have a doctor who treats MCAS patients? That would be a great place to start. Also, many MCAS patients start with H1 and H2 blockers. I have a video on treatment on my channel that you can check out
Hey do you have high blood pressure or low blood pressure?
How to test for mcas
Anybodybusing the carnivore/low-histamine diet to help with MCAS?
My tryptase is absolutely elevated - is this a no questions asked case MCAS diagnosis then or could it be elevated for other reasons?
I have a theory about MCAS. I am wondering whether sufferers had a neglectful, abusive, or narcissistic mother.
MCAS is a very heterogenous illness and probably has more than one cause. Experts agree that there is probably a genetic or epigenetic component to it. I certainly am of the opinion that chronic infections play a role in MCAS for some people and I think that in the next decades, science will show that. Many people with MCAS say that reducing stress, both physical and emotional, helps them manage their MCAS symptoms. I think it is possible that childhood stress, neglect, and trauma have a role to play in the development of many diseases but that doesn't necessarily mean that everyone with MCAS has had childhood trauma and it also doesn't mean that everyone with childhood trauma will go on to develop MCAS
Was your doctor
Dr. Brandon Brock?
No
Update and Question: After seeing 2 different immunologists and was told exactly like you said "if Tryptase is not elevated, then not mast cell" and "I will order additional only if your tryptase is elevated"......even after I mentioned and asked them to order other tests like Urine, other mediators. So I am seeing a GI doctor, I will see if I can get him to do EGD for mast cell CD117. I don't know what to do. I looked up MCAS clinic in Maryland. There is Johns Hopkins but again they said they accept MCAS patients only if Tryptase is elevated.
Question is Do you know any doctor who is willing to do those tests even in your area? I am considering flying to Mayo Clinic but I doubt they will even do anything if MCAS suspected. (then where do MCAS get diagnosed and treated!?!?, no one wants to deal with MCAS.......so weird).
So far I only had Tryptase done (level 4) during non-flare up time, and Skin biopsy on Flushing rash (normal amount of Mast cell but Spindled shape = inconclusive)
Thank you so much, I wish the test is not solely based on Tryptase!
Hola, me alegro al verte reír.
Mi mamá y yo intentamos mantener nuestro ánimo
Hey. Great vid. If i may ask where are you located. Im from NY and i have heard of dr.Afrin who is an hour away from me but hes too expensive. I have yet to find an immunologist or allergist that can help me.
I live in San Diego. Dr. Afrin is like "the" MCAS doctor but it isn't really necessary to see him, especially if you have a less complicated, rather than more complicated, case. For doctor recommendations, I recommend you add yourself to all the MCAS Facebook groups you can find and ask for doctors that treat MCAS in your area. Facebook groups are great for that!
Check out Dr. Anne Maitland in NY. If you want to see her, you have to pay a membership (its totally reasonable). There is someone else in her office you can see that that does not require a membership. The great thing is she takes insurance!!!! Have no personal experience but we are considering contacting her soon.
Do you have to eat a specific diet for MCAS?
Some people react more to food than other people. Food is one of my main triggers. I started off on the low histamine diet and that was immensely helpful. Unfortunately, I've only gotten sicker over the past two years and have lost almost all foods along the way. Now I only tolerate butter, potatoes, and around 6 vegetables and some herbs for taste
Do anti histamines suit you? Whatever medicine I take I become resistant to it after few days plus my food allergies are wild. I can't eat anything except banana. I can't even take medicine.
So sorry to hear that!! I was down to five foods and could only tolerate a few medications before I treated SIBO. Now I can handle several supplements and have increased to 14 foods. I cannot
overstate how much SIBO was making my MCAS worse. I take 25 MG of Benadryl 6 times a day and 60 MG of Pepcid and low dose Valium for my MCAS
amazing knowledge and great sense of humor😂
Do you have ehlers danlos? Typically MCAS and EDS go hand in hand with each other!
I actually don’t have EDS! As an aside, there is a case report of a woman with hEDS that completely resolved with bartonellosis treatment
Omg you are hilarious. Can you do a video on what makeup products you are able to tolerate? I’m splashing nasal cromolyn on my face like if is my primer before I put a foundation and is working 🤪good tip right?
Anyways, I react to things in my eyes and you can imagine my frustration because I used to be a makeup artist 👩🏼🎨 thank you in advance
awww no I am so sorry to hear this!!! With my MCAS, it is almost solely GI symptoms. I can react on my skin but it's mostly to stuff that is formulated to penetrate more deeply like skin care while makeup that just sit son top (mostly) doesn't bother me. I laughed at nasal crom as a primer 😂 such a funny joke but also so sad. For makeup suggestions, I suggest you add yourself to an MCAS Facebook support group and ask there (and probably throw in a sentence about how makeup isn't the most important thing to living so people don't get all up in arms about your question because the internet is, well, the internet) and you might get some suggestions for brands/products
It's the French accent but we say chaîne UA-cam haha
just wait until you see my French in my next video 😂 I did study for 6 weeks in Cannes and a bit in college. You won't be impressed
@@BartonellaBabe Really? That's cool! I never underestimated your French level lmao
Ok I dare ya to put a French sentence in your next video! You also speak Spanish and all
Allan Guigal I already filmed and am editing my next video and you will hear my French. Hopefully your ears don’t bleed 😂 and I don’t speak Spanish! Americans speaking other languages is a joke. I wish they taught us early in school but they don’t!
You are too funny