Mast Cell Hell - MCAS in Bartonella
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- เผยแพร่เมื่อ 5 ก.ย. 2024
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Vids will be coming out as fast as my illness will let me!
Connect with me on Instagram!: @bartonella_babe / bartonella_babe
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Inquiries: jakethebartonellababe@gmail.com
REOURCES FROM THE VIDEO:
Low Histamine Diet from Anita Tee’s factvsfitness.com: factvsfitness....
Never Bet Against Occam by Lawrence Afrin: www.amazon.com...
Toxic by Neil Nathan: www.amazon.com...
Mast Cells United by Amber Walker: www.amazon.com...
MORE MAST CELL ACTIVATION RESOURCES:
tmsforacure.org/
www.mastattack...
Facebook Support Groups:
/ mastcell
/ 207077049364043
MORE ABOUT BARTONELLA:
Open access high-quality journal articles about atypical, chronic Bartonella infections:
Evidence of Bartonella in 41% of rheumatology patients: www.ncbi.nlm.n...
Argument for a “One Health” approach to animal and human medicine/health:
academic.oup.c...
Understanding Bartonella Webinar:
• Understanding Bartonel...
Podcast with Dr. Bob Mozayeni and Dr. Ed Breitschwerdt:
tmgmd.com/907-...
Best diagnostic testing:
www.galaxydx.com/
JOIN my Bartonella support group on Facebook called "Breaking Down Bartonella":
/ 1104493829902071
in my experience, most patients, like yourself are smarter and more in tune with health than most MD's/GP's....which is so sad. these days they're notorious for not really knowing much about "health" but just know how to peg a label on someone and prescribe a pharmaceutical solution (which sometimes works, and sometimes doesn't)...
BTW..keep it up. Your video is harlmark youtube celeb style. REALLY surprised you don't have 1+ million views already....
Thank you so much! Unfortunately the practice of medicine doesn't always keep up with the research. And I am working toward that 1 million + views!
@@BartonellaBabe you have what it takes FOR SURE...I guess the subject matter doesn't lend itself to going viral.... it's not like you've made a twerking video :P
@@dirtforce0897 bahahaha
Hello Dirt force the sad truth is scientists are guided by patients not the other way around... People with chronic debillitating health problems are wise beyond their years and very mature.... They should be the doctors instead of being a patient because who would know better than someone who actually has the damn disease.... All the best
Fun and informative - you should definitely keep making videos
Thank you! I am releasing them as quickly as my health will allow
Just want to add my experience here, I have Lyme, Bartonella and babesia and had terrible MCAS. I fasted for 3 days on just water and it turned things around hugely. Before this I couldn't eat most things, couldn't take a hot shower and I was itching constantly.. Fast changed this. Best of luck to everyone
Were the results temporary, or are you still better from that fast?
Omg, yes Toxic!! It's such a good book! I'm learning so much about my body and my health while reading it! (I've been diagnosed with Bartonella, mold toxicity and a few other fun tick-bourne opportunistic bugs.)
Neil Nathan definitely has a lot of tools in that book. Now that I know more about Bartonella, I have some critiques of his Bartonella chapter but it is a great place to start for sure ❤️
Oh man, that first line--> story of my life! You've got some really good info here, thanks for putting in the legwork! I'm 1.5 years into treating a 25 year old bartonella infxn and I'm finally just getting my mast cells/immune system under control with natural treatments. It's a lot of work but is happening. My heart goes out to you!
It makes me feel very good that these videos resonate with people. Thank you!
May I ask what natural treatments you'd use?
I got cat scratch fever when I was 7. Are you saying it can still affect you 25 years later even with initial treatment?
@@brandyleeledford4232 You'd better believe it!
Oh great. I have EBV and CMV but I wasn't tested for Bordatella. I had Cat Scratch Fever 34 years ago and that's around the time I started having digestive issues.
Great information! Thank you for sharing! I’m going through treatment now and it’s been horrible for me. Your videos are so helpful explaining Mast Cell. Keep up the great work for all of us suffering through this.
Thank you so much! Good luck on your treatment :) it definitely is hard
More great information and excellent reminder that we need to be our own health advocates!!
Unfortunately we do! I don't know how some of us do it!
MCAS and RCCX genetics seem to go together. I think based on genetics, some people are more sensitive to mold and other toxins. I thought at one point that i might have bart, but I think I was just sensitive to mold. I mostly use plant oils and oxidation therapy now, to clean my intenal spaces. Dr Rowen, who is a highly qualified ozone doctor, uses muscle testing to seek out the root of neural issues. He has some video on youtube of how he finds infections under root canals. MCAS is part of immunity, and immunity uses the gut and the brain, and needs the wiring in between to work properly.
I am also at a point with the disease where eating is THE worst. I did discover Soylent. Maybe you've already tried it, but as long as I sip it slowly, it seems to be one of the few really nutritious things I can eat without super discomfort. Also, Kirkland's brand protein bars, again small bites. Both of these are low sugar to keep from feeding any candida that tries to overgrow too. May still upset some, of course, due to the mast cell hell. Love that phrase btw!
Sorry to hear about your mast cell hell but glad that the soylent and protein bars are going relatively okay!
Hi b-babe! I have been bedridden for 4 years with severe Myalgic Encephalomyelitis and comorbidities - MCAS, POTS , Gastroparesis & Eosinophilic Colitis. I struggle/react to stimulation, light, noise, vibration, motion, odours, my own tears + other known allergens and everything is generally worse when I overexert myself. Due to the above I haven’t been able to watch full video(s) yet [so I’m sorry in advance if you’ve already covered this] but I’m really intrigued to know how you manage to tolerate makeup/what beauty products are safe for you to use?
As you mentioned in one of your replies in the comments: everyone’s MCAS journey can be different, no two cases are the same, it depends on whether it’s primary or secondary and triggers vary etc , so please don’t think I’m saying you’re not suffering or don’t have it as bad as me or others for being able to wear it as this is no competition and I’m absolutely not suggesting that, just genuinely curious! Plus, my mum is my 24/7 caregiver and has to be careful what she wears on her skin because of me- so any tips on where I can find MCAS friendly products would honestly be a god send- my mumma deserves to look & feel her best and can’t do so because of my damn “mast cell hell”😭🔥💥🔥💥
I’m tube fed, cpap/oxygen + Intravenous fluid & IV antihistamine dependent. I’m also on HRT (hydrocortisone + progesterone) a personalised MCAS management protocol and I will hopefully be starting IVIG again soon.
I’ve been tested for Lyme on multiple occasions due to similar symptoms and although I was already sick, after returning home [the UK] from walking in a bikini and bare foot through the Mayan Jungle in Mexico my health deteriorated. I did push my limitations whilst I was there but realising that I could’ve been bitten and not noticed made me get tested again- this time by an infectious disease doctor in a university/teaching hospital in London. It came back normal. But other patients have told me that the tests here can produce false negatives- Is this true? I’m so confused 🤷🏻♀️ The ID doc was sure that I don’t have Lyme, but How did you get tested for Lyme & co. Infections? How can I rule it out for good!?
Last but not least... I’m kind of jealous but relieved at the same time that someone is doing what I’m currently incapable of rn- raising awareness - and so at such a fantastic level! I honestly don’t understand how you haven’t got a ton more subscribers/views already because this is seriously incredible stuff, you should be very proud🤗 keep doing what you’re doing and you will be a well known face/voice of the chronic illness community very soon, I’m sure of it! 🙌🏻 ✨Your humour and personality makes you sparkle. ✨
Much love, season’s greetings & wishing you a healthier new year from across the pond. 🇬🇧 ~ Chloe. 🎀
Hi Chloe! I am very sorry to hear about your illnesses. As far as beauty products go, my mast cell activation only really reacts to things that go down my throat (foods/meds/supplements) so I don't have any problem with makeup. I wish I could be of more help to you there. I wonder if more "natural" makeup brands are better?
Infectious disease doctors, at this point in time, don't "believe" in chronic infections, but I do believe that one day (hopefully soon) they will. In order to properly get a diagnosis and treatment for Bartonella and Lyme you will need to get to a Lyme Literate Medical Doctor. If you add yourself to Facebook support groups, the moderators can usually point you in the right direction. For Bartonella, you can join the Beating Bartonella group
Mast Cell Hell is my new band's name ❤️
Bahaha perfect
Ha! You are great. I feel the flipping same way. Good luck on your journey. Greatings from Hollands.
Greetings! And thank you. Good luck to you too. Mast cell hell is no fun to put it mildly
Hello your hysterical being sick for so long builds character.... I have fibromyalgia not sure if fibromyalgia is actually histamine intolerance and Mast cell problems or what but your video is life savings..... I'm always hot like I'm sitting on a heater do you have that sympton??? Thanks you very much
Thanks so much for watching! Hopefully you are seeing a good MCAS specialist and/or Lyme Literate Medical Doctor (LLMD) to get a diagnosis and proper treatment. I don't have that symptom but it sounds terrible!
Amen... learning to deal with life-altering pain for years does make you tough! That’s a great way to put a positive spin on a really terrible situation 🥰
@@katiematthews3939 Thank you so much Katie!
It is always an experience to go to a new Doctor and have them Google your Diagnosis in front of you because they have never heard about it. The biggest issue my son has had is Doctors that are stuck in only doing what they have done before and not being willing to try new treatments (that aren't pills).
Paul Conner that is always a trip! It’s very frustrating that it seems like many doctors are not willing to learn new tricks but there still are ones that you can find if you can search far and wide enough
Thank you, great video! Loved the book Toxic, very informative and I can relate, yes I am in mast cell hell, tried histaquel and did not help. This seems to be alot of trial and error for me, on to the next supplement or medication, thanks again! 💚💕
It's so much trial and error with mostly error unfortunately! Hope you find some relief soon :)
Interstitial Cystitis / Painful Bladder Syndrome - also undiagnosed infections
Love your sense of humor. Snark, caustic comments, attitude and pejorative invective laden comments are...oh so sweet when directed towards deserving pompous arrogant bloviating cretins, also known as clueless "doctors". You are not alone in dealing with doctors wherein their "education" seems to have stalled in the 80s, the "good" ones in the 1980's, the rest from a previous century. I have MCAD but according to most doctors, its just a mental illness. Sure, they see the Urticaria, the signs of chronic Anaphylaxis, heart and organ anomalies, digestive issues akin to dysentery, etc. And they have prescribed roughly 8000 doses of Prednisone (seriously, been on it for 7 years) plus the usual H1, H2, Mast Cell Stabilizers etc, but obviously...its all in my head. Personally, I threatened to attack them with their own cotton balls and tongue depressors, but to no avail. So, thanks for the information, the uplifting video, press on and enjoy your day. :)
Thank you so much for watching and the kind words! Obviously it's NOT all in your head. I can't believe doctors say that especially when there are physical signs of proof, like you have. Good luck in your day to day of living with a chronic illness
It's made me feel like it's going to kill me. My blood pressure is all over the place and that's scary. My heart actually Hurts. I'm going to try flush out my histamine ASAP. Because I'm scared everyday
I have really bad GERD, suspect poor stomach motility but one of the weirdest things is random Angiodema (no hives, just huge swelling of lips, other parts of face, sometimes hands and feet), no lip sores. Was diagnosed with Fibromyalgia a year ago and am now seriously wondering about Mast Cell...So confused, need to get those books! Thank you.
You're welcome! And yes those symptoms sound like it would be very wise to at least look more deeply into mast cell. It's not normal to just blow up with edema! Good luck to you ❤️
@@BartonellaBabe thank you. Just ordered some DAO (not DOA 😂) and will try Benadryl. You mentioned Pepsin - I can only find it with HCL - been taking these combined for about a fortnight. Seems to work a bit on the acid but slow motility of stomach still means I have GERD by 6pm hours and hours of burping with some acid if I lay down - even if I only eat one meal at 10am it’s still the same by 6pm!
Anyway, it’s great you got back to me (here in sunny (for once) Scotland). Really appreciate it. As you say - we have to keep trying because living well with these issues just isn’t an option. I am ever positive it can be controlled!
@@Musika1321 haha the not DOA joke got me! I actually talk about Pepcid (not Pepsin) which is an H2 blocker and is an antacid. Some people have too much stomach acid from the release of histamine so that’s what the H2 blocker helps in MCAS
@@BartonellaBabe ah that makes sense. You must also be able to have too little stomach acid and food sensitivities needing H1? I think that’s my issue. It really is a very individual journey. I have a consultation with a functional medicine practitioner tomorrow...hoping to be directed to the right tests for me. It’s all worth sharing though as we pick up little nuggets from each other. Here in Scotland our NHS is great for conventional stuff but anything out of the ordinary that requires a more holistic approach - forget it. We need a massive paradigm shift to ensure future generations can be proactive about their health.
@@Musika1321 It is definitely possible to have too little stomach acid and the food can sit in there undigested and make you feel sick and/or react. If you take betaine HCL and it helps you, that would indicate a lack of stomach acid. Totally agree about the paradigm shift!
Going through this now its crazy!! EDS, POTS, Endometriosis, Fibromyalgia, Lupus. Just had brain surgery and they swear you dont get allergies to titanium in the brain. I feel like it's not true.
I am sorry to hear that :( I have no idea bout allergies to titanium in the brain but knowing what we know about mast cell, it's possible for people to have sensitivities (and therefore react) to so, so many things, including things some doctors say don't happen
→ 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
I’m going through this
Do you know if Babesia can also trigger histamine issues? I have both Babs and Bart. One of my practitioners said I experienced a resurgence of Bart but I'm wondering if it could be Babesia as well. Hope you're hanging in there.
Babs can too, there rn 🥺😭
Thanks for the informative video! Just curious, how did you get diagnosed with MCAS?
I went through a lot of testing for MCAS and it all came back normal. One of my doctors says that you would have to literally pee in a cup that is on ice for it to be accurate. Some doctors will not give out the diagnosis without positive testing which could take months to acquire. There is also a difference between MCAS induced by Bartonella and MCAS that is someone's primary health issue. Basically my doctors have given me an MCAS diagnosis based on symptoms and positive response to antihistamines and a diamine oxidase supplement
I see. My doctor diagnosed me based on prostaglandin (PGD2) levels in my blood and a clinical "scratch" test along with tilt test for pots. But yeah she also things bartonella triggered my MCAS but I'm all done treating bart now and my mast cells still remain activated...hoping they will calm with time. Keep us posted on how you do! =] @@BartonellaBabe
@@p4park I am hoping yours calm with time and mine as well!
My doctor did bloodwork and it came back normal but when she literally spelled out MAST on my arm with the back of her pen my skin started to burn and itch and you could see the word MAST on my arm. Weird I know.
@Peter Park how did you treat your Bart?
New fan here... I’m in hell... seeing my 3rd new doc this week. 👌🏻🤬💩
I hope that they can be helpful to you, even in just the slightest way! Sometimes even useless doctors give you one tiny clue that can propel you forward lol
My mast cell is so bad everyday nausea vomiting my Fibromyalgia
CVS , can’t eat or drink
Central line in my chest IV Benadryl
Hydration never ending
Mast cell activation is the worst
Bartonella Babe
I would love to collaborate with you sometime if you like . You can google my name Starr Andrews Strong HG Activist
or my organization name Hyperemesis Gravidarum Before During And The Aftermath (HGBDATA)
I love your humor , your corky like myself . What app do you use to edit ?
HG Fairy 🧚♂️ Godmother
If we treat Bartonella, won't the mast cell issues go away?
Yes if you treat the Bartonella, the MCAS should either completely go away or improve greatly. The problem with severe cases, like me, is that the MCAS stands in the way of treatment. It is a catch 22. Also, treating SIBO, if one has it, can help calm the MCAS down
@@BartonellaBabe Im the same way my MCAS stands in the way of treatment but yet I need it or infections get bad. I'm at a loss because I have babesia and bartonella as an issue :( I notice treating bartonella helps the MCAS but its like it flares it then makes it go away so I guess that's a good sign. But my problem is I have babesia and when you treat babesia that flare bartonella which bart causes MCAS lol do you have any recommendations. I'm just so stuck 😠
@@melarenee308 It's very hard to determine what is a side effect, what is a herxheimer-like reaction, what is MCAS, and what is a flare so it's something that takes time to figure out. It's good to be on MCAS maintenance therapy like H1 and H2 blockers. I recommend you join our Breaking Down Bartonella support group on Facebook. There are people in there that have/had Babesia (I haven't) and there are lots more people to offer insight, other than just me 😊
Thank you. I just wish I didn't have to treat so the mast cells calm down, but I'm stuck in the middle of having to treat and manage the mast cells. I have no choice either way. Is that normal?
@@melarenee308 Managing MCAS is a very normal part of bartonellosis treatment. Some people don't have bartonellosis or any other chronic infection as the cause of their MCAS. What this means is that it's probably a genetic/epi-genetic cause that, at this time, cannot be "cured" and can only be managed. So, in some ways, we are fortunate that we have the opportunity to reverse the MCAS significantly or entirely
the brain theybaffect the brain badly.and kneoing how to heal.can ttake this crap.
Miss you Jake...
Do you know if Babesia can also trigger histamine issues? I have both Babs and Bart. One of my practitioners said I experienced a resurgence of Bart but I'm wondering if it could be Babesia as well. Hope you're hanging in there.
Howard_the_Duck I certainly can’t say that Babesia doesn’t cause histamine issues, but if I had to guess, the correlation between Bartonella and histamine issues is much stronger than Babesia. And thank you. I am hanging in there as best as I can ❤️