Treatment for Mast Cell Activation Syndrome Induced by Bartonella: Still in Mast Cell Hell!
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- เผยแพร่เมื่อ 17 พ.ย. 2019
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As always, see below for links to high quality peer-reviewed journal articles and other helpful links!
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Helpful Links:
1. Molderings and Wirz: A Practical Guide for Treatment of Pain in Patients with Mast Cell Activation Syndrome: www.painphysicianjournal.com/...
tmsforacure.org/
www.mastattack.org/
Facebook Support Groups:
Cromolyn Users: / 335109070254000
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/ 207077049364043
Low Histamine Diet from Anita Tee’s factvsfitness.com: factvsfitness.com/histamine-i...
Never Bet Against Occam by Lawrence Afrin: www.amazon.com/Never-Bet-Agai...
Toxic by Neil Nathan: www.amazon.com/Toxic-Toxicity...
Mast Cells United by Amber Walker: www.amazon.com/Mast-Cells-Uni...
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MORE ABOUT BARTONELLA:
Open access high-quality journal articles about atypical, chronic Bartonella infections:
1. Cat-Scratch Disease-Associated Arthropathy: onlinelibrary.wiley.com/doi/p...
2. Musculoskeletal Manifestations of Cat Scratch Disease: academic.oup.com/cid/article/...
3. Evidence of Bartonella in 41% of rheumatology patients - Bartonella spp. Bacteremia and Rheumatic Symptoms in Pateints from Lyme Disease-endemic Region: www.ncbi.nlm.nih.gov/pmc/arti...
4. PCR Amplification of Bartonella Koehlerae from Human Blood and Enrichments Cultures: parasitesandvectors.biomedcen...
5. Rheumatological Presentation of Bartonella Koehlerae and Bartonella Henselae Bacteremias: A Case Report: www.ncbi.nlm.nih.gov/pmc/arti...
6. Bartonella Species in Blood of Immunocompetent Persons with Animal and Arthropod Contact: www.ncbi.nlm.nih.gov/pmc/arti...
7. Bartonella ssp. Bacteremia in Patients with Neurological and Neurocognitive Dysfunction: jcm.asm.org/content/jcm/46/9/...
8. Neurological Manifestations of Bartonollosis in Immunocompetent Patients: A Compositeof Reports from 2005-2012: www.lymepa.org/Breitschwerdt_J...
9. Cat-scratch Disease: An Unusual Cause of Combative Behavior: www.sciencedirect.com/science...
10. Hallucinations, Sensory Neuropathy, and Peripheral Visual Deficits in a Young Woman Infected with Bartonella Koehlerae: jcm.asm.org/content/jcm/49/9/...
11. Bartonella and Intraocular Inflammation: A Series of Case and Review of Literature: www.ncbi.nlm.nih.gov/pmc/arti...
12. Bartonellosis: One Health Perspectives for an Emerging Infectious Disease: academic.oup.com/ilarjournal/...
Understanding Bartonella Webinar:
• Understanding Bartonel...
Podcast with Dr. Bob Mozayeni and Dr. Ed Breitschwerdt:
tmgmd.com/907-ticks-fleas-mys...
Best diagnostic testing:
www.galaxydx.com/
JOIN my Bartonella support group on Facebook called Breaking Down Bartonella:
/ 1104493829902071
Bartonellosis
Cat scratch disease
Mast cell
Mast cell activation
Mast cell activation syndrome
Mast cell activation disorder
MCAS
MCAD
Mast cell activation disease
Treatment for mast cell activation syndrome
Bartonella and mast cell
MCAS and bartonella
Lawrence Afrin
Tania Dempsey
Jake Picker
Bartonella Babe
Low histamine diet
Overactive immune system
Multiple medicine sensitivities
Food sensitivities
H1 blocker
H2 blocker
Quercetin
→ 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
A low carb or zero carb diet seems to be really helpful. If you get tired, add in the adrenal cocktail. A lot of people get help from Restore too. I think mast cell is toxicity due a leaky gut and environmental pollutants.
For sure, I think you're right on the nail with that
About 2 years ago I was still undiagnosed after 15 years of mysterious illness hell. Now that I know what I have, it’s great to see the community and how it’s growing along with awareness of this mother effer of a disease. It’s terrible that so many people suffer like me but there is some comfort in knowing I’m not alone. Thanks for bringing awareness and levity to the space.
Someway Thank you for your comment. It is a terrible terrible illness and more common that currently appreciated but I know that one day it will get the recognition it deserves!
I come here for the MCAS medical advice...I return for the snark, sarcasm, comedy and the...snarkish sarcastic comedy. :)
And I come here for your clever comments!!
I love watching your videos. They give me so much hope and help me know I’m not going crazy
I love you doll . I been in mast cell hell and so sick I wish I could edit as quick as you
Love your content and personality! It is hard to find quality information about MCAS! One of my favorite resources is Healing Histamine (her blog is super informative). MCAS is a bear -- I feel like as soon as I begin to figure it all out, something gets out of balance and throws everything off again! I was diagnosed a little over a year ago, after experiencing symptoms for over a decade. I hated the years of ups and downs in order to get a diagnosis. I can't even tell you how many times allergists & doctors dismissed me as crazy. So annoying. My main symptoms are mostly skin related (severe itchiness, brain fog, inflammation, and fatigue along with occasional bloating, hives, or mild anaphylaxis). My main triggers are showering, skincare (especially lotions or shaving), intense exercise, cold weather/wind (anything that causes goosebumps), and STRESS. It is incredible to me how everyone with MCAS reacts in their own unique way.
I only just saw this comment because TH-cam is stupid and isn't showing me all of my comments. UGH. But yes! MCAS is so weird, especially when it switches around on you. Always have to be sleuthing 😑
Yes the 🧠 fog is important. They keep saying it my panic attack and anxiety. I hate when a doctor says it’s all in my head when all reality I’m dying. I wish I can get the help I can
I have same problem.. Do you have treatment wich helps you?
Wow, information dense video. I’ll have to save this and RE-watch this as I try out some of these remedies.
Over time I have begun to improve my gut health but it hasn’t been entirely predictable. Oregano oil has improved my lower GI processes. Diet has improved the bloating and malaise after eating. It is such a relief on those days when things go right.
I feel like the GI tract is one of the most confusing organ systems. It is really hard to tell what is going on. To add to the confusion, many people say they have stomach problems when they are really talking about diarrhea. Probably a vestige from childhood and/or polite society lol
This is sooooo good!!! Thank you for this. I’m gonna give the DOA stuff a try :)))
I hope it goes well! I pop it like candy lol. Very expensive candy
Very good information. 😊
I love your videos DONT STOP VLOGGING
Thank you! I definitely won't
@@BartonellaBabe did you stop
Cheers from Spain Bartonella😉, my name is Abel, and i think that I have a mast cell activation 😬. Today I recived the notice to the laboratory and I have a genetic DAO deficit. Thank you for your recomendations, here there aren't all those drugs but there are a similar suplement like a Histdao, named NATURDAO, there are a hight activity to degradate histamin and cofactors. It is a very good product, thank you very much and we are here to help you, greetings from Europe!
That dog was so funny 😆
I don't know if you've seen the show atypical, but you remind me so much of Paige. In a good way, I love her!
I haven't seen it but I will have to check it out! :)
So much Information. I hv histamine intolerance and take a whole bunch of supplements as well as chromolyn. Bring to increase tolerated food. What a challenge.
Awesome!!!
Does your HISTDAO have magnesium stearate or maltodextrin? Cause guess what...my brain doesn't tolerate it!
Honestly, this was a great video. I have mold illness and also read the book TOXIC by Dr. Neil Nathan.
Thank you!! It's the xymogen brand so you can look up the excipients to see if they agree with you or not 😊
Just landed on this marvellous channel! It's encouraging to see someone fighting with that illness with that strenght, (even if there are only the minutes you're on the cam XD) I have some thoughts on HISTDAO, because normally it's recommended, as you said, to take 30 min before the meal, but I noticed it worked best if I took with the meal. Did you experience anything on that?
Thank you! Still in the trenches of the fight but I definitely am having more hope these days. I have noticed that it works best if I take it with the meal too! It has a very short half-life so if you take it 30 minutes before, it may have already degraded and not be as effective
@@BartonellaBabe Good to hear your progress! Definitely, when you follow and ask the science, soon or later the answers will arrive. I also noticed that with digestive enzymes (the ones that have all) and the ones for fructose (xylose isomerase) and FODMAPs (alfa galactosidase), I supposed they must travel like at the same time to make the effect. PD: for MCAS I'm using aloe vera (for skin and eating capsules) and curcumin phytosome (in phytosome form is safe for hydrogen sulfide SIBO), for if u want to make a look and talk to your doctor about them (if you don't already know haha)
@@PaPsHoW I've already tried aloe vera and reacted to it. I don't do well with plants and do best with Benadryl, Pepcid, and Valium but I am very glad to hear those are working for you!
@@BartonellaBabe Being honest, I reacted a little with aloe vera with little burping and I was thinking it was because it has a little amount of sorbitol, but when I saw you talking about MCAS and burping was eureka moment hahaha. With curcumin phytosome I had zero symptoms, it's natural and acts as a very powerful antiinflamatory, not only on mast cells, and also is natural (and it has a very good taste). I don't receive any fees eh! xd, it's because all ND's and people reviews were very good haha. For example, in my case, I had inflammation in eyes (almost couldn't look at screen), knees (almost couldn't walk) and those symptoms (plus others) disappeared totally
What program do you edit with ? Do you edit on the computer?
My mast cell is so bad . IV Benadryl every 4 hours , IV promethazine IV Zofran every single H1H to blocker and hydration daily. Anaphylactic every day I’m allergic to everything triggers and non-triggers.
I love your sense of humor and your Corky which is my type a personality so I would definitely want to collaborate with you. If you like .
HG Fairy 🧚♂️ Godmother
Starr Andrews Strong HG Activist
Hyperemesis Gravidarum Before During And The Aftermath (HGBDATA)
Love it 😀
Thanks 😁
pleaseeee can you do a video about what you eat, im reacting to everything. and have water retention all over my body with hives :(
I only just saw this comment because TH-cam is stupid and isn't showing me all of my comments. UGH. I am sorry to hear that you are reacting to everything! Everyone with MCAS is different. I follow a strict low histamine diet and that helps but I continue to lose foods. You may want to try a low histamine diet or just try one food at a time and add them back in to see what you're reacting to. Hope this helps!
Your list is as long as mine!
I wish I had known back when I made this video that SIBO was driving a large percentage of the MCAS and reactions. Now that I have treated SIBO and I am keeping it in remission, I am finally making progress. I hope you make progress in your journey soon! ❤️
Hey! Have you tried Ozone treatment or Peptide therapy ( LL37, KPV, BPC-57)???? Look into those. 😢
i got here from a histamine intolerance group on reddit. thank you for all you do. i seem to be in the clear for Bartonella at the moment, knock on wood, but this video is amazing and people with HIT from covid should see it. my HIT might be from celiac disease too, in part, and i'm 39 so. anyway, nigella sativa [black cumin or black caraway] also helped, i'd put a teaspoon of the seeds in boiling water to soften them and eat them [they're a bit al dente]. i've heard they're found on some "everything bagels" and are generally recognized as safe. there are some papers about them [as well as at least one of their active compounds: thymoquinone], but they aren't approved to treat anything at this time, as far as i know.
i use a teaspoon or two on bad days, i don't know of an upper tolerance, but given the mechanism of action for thymoquinone, i don't know if i want to eat them every day. DAO and a certain German list of HIT trigger foods, histamine liberators, and etc saved my butt. i was having heart and lung problems from HIT -- don't wait that long y'all, and good luck.
the Ehlers-Danlos Society also has interesting videos on HIT, MCAS, and more on their youtube channel of the same name.
i don't know if i can add a link but here's the list: www.mastzellaktivierung.info/downloads/foodlist/21_FoodList_EN_alphabetic_withCateg.pdf
You talked about amitriptyline in your other video, have you tried it?
I have not but I did try doxepin and unfortunately reacted to it
Where is your stomach pain? Mine was mostly under my ribs and I have colitis so I have pain on my left side
I'm scared its going to kill me. Mine are bad and I'm going for intolerance test tomorrow but that wont do anything. I need to ask my doctor for steroids. To see if it can block The histamine.
I’m afraid as well I a actually wheezing all the time and pain. I can’t understand why doctors just don’t care to understand this or study it.
Where did you get your testing for Bartonella?
Galaxy Diagnostics. I don't think I would trust any other place!
Do you have issues with the ingredients of makeup? I've been searching around so much to try and find a brand with few ingredients that doesn't give me a reaction. 🙃
Hi Kelly! I actually don’t have issues with ingredients in make up, at least as of now. What’s so great about this illness is it can change and get worse! 🙄 I’m sorry I couldn’t be of more help in that department 😕
Are you in any MCAS Facebook groups? I bet if you asked there you would get lots of suggestions!
@@BartonellaBabe No worries! Thanks for the reply and that suggestion. I shall look into the Facebook group! :)
@@BartonellaBabe And I'm glad you in fact don't react to makeup. Pray it will never be an issue 💛🤞
Thanks for this video. How much do you feel the diamine oxidase helps you? It looks a bit pricey is why I ask.
At one point, I could not eat without DAO. They were lifesavers. And you're right, they're very expensive! Once I treated SIBO, I didn't need them anymore, which I wasn't expecting
@@BartonellaBabe For MCAS: are you on or have you read testimonials regarding any prescriptions that are really helping people?
@@perennialistperspective lots of prescriptions, over the counter meds, and supplements help people. MCAS is a very heterogeneous illness, meaning it presents differently in everyone. Finding what works is basically just trial and error. I take Benadryl, Pepcid, and Valium daily to manage my symptoms
@@BartonellaBabe totally true. have you been able to try any of the immunosuppressant prescriptions? i wonder if i could convince my dr. to let me try one.
@@perennialistperspective I've tried hydrocortisone (reacted) and methyprednisolone helped a little until I started reacting to it. I was on imatinib for a month and reacted the entire time but I think it's worth trying again if I get to a higher dose more quickly. My allergist/immunologist is currently trying to get Xolair covered for me
just use xolair
Hi girl ! How are you doing? You haven’t posted in a while ..
She died January 2024 :(
@@Cincyseller513 I am very sorry to hear this. I am shocked. From her illness?
Hey, you're VERY good with medical stuff...I'm assuming you're in school? You should really go into medicine or nursing, a natural.
That is so funny you say that because I am way too squeamish to do those jobs. I don't like to touch or even look at gross things lol
@@BartonellaBabe well better yet, get into medical research or something, you're definitely smart enough.
Try marijuana