Treatment Of Interstitial Cystitis AND Mast Cell Activation Syndrome | IC and MCAS, Symptoms, & More
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- เผยแพร่เมื่อ 21 ก.ค. 2024
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Interstitial cystitis (IC) is increasingly becoming recognized as linked to mast cell activation syndrome (MCAS) and how this opens up the door to many other potential medications and supplements that may help patients with IC.
0:00 Intro
0:22 Defining IC
1:55 Symptoms
4:12 MCAS As The Cause Of IC?
8:03 Diet And Lifestyle
9:24 Medications
17:01 Supplements
17:45 Other MCAS Therapies That May Help IC
Learn all about mast cell activation syndrome here on my playlist: • MCAS (mast cell activa...
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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.
Mast Cell Activation Resources:
tmsforacure.org/
www.mastattack.org/
Interstitial Cystitis Association
www.ichelp.org/
Articles used to create this video:
1. Sant, G. R., Kempuraj, D., Marchand, J. E., & Theoharides, T. C. (2007). The mast cell in interstitial cystitis: role in pathophysiology and pathogenesis. Urology, 69(4), S34-S40.
mastcellmaster.com/documents/I...
2. CHIANG, G., PATRA, P., LETOURNEAU, R., JEUDY, S., BOUCHER, W., GREEN, M., ... & THEOHARIDES, T. C. (2000). PENTOSANPOLYSULFATE INHIBITS MAST CELL HISTAMINE SECRETION AND INTRACELLULAR CALCIUM ION LEVELS:: AN ALTERNATIVE EXPLANATION OF ITS BENEFICIAL EFFECT IN INTERSTITIAL CYSTITIS. The Journal of urology, 164(6), 2119-2125.
citeseerx.ist.psu.edu/viewdoc/...
3. www.ichelp.org/diagnosis-trea...
4. Bouchelouche, K., NORDLING, J., Hald, T., & Bouchelouche, P. (2001). The cysteinyl leukotriene D4 receptor antagonist montelukast for the treatment of interstitial cystitis. The Journal of urology, 166(5), 1734-1737.
5. Theoharides, T. C., & Sant, G. R. (2005). A pilot open label study of Cystoprotek® in interstitial cystitis. International Journal of Immunopathology and Pharmacology, 18(1), 183-188.
journals.sagepub.com/doi/pdf/...
6. Kesterson, K., Nahmias, Z., Brestoff, J. R., Bodet, N. D., Kau, A., & Kim, B. S. (2018). Generalized pruritus relieved by NSAIDs in the setting of mast cell activation syndrome. The journal of allergy and clinical immunology. In practice, 6(6), 2130.
www.ncbi.nlm.nih.gov/pmc/arti...
7. Speer, L., & Bhambore, N. (2011). Interstitial cystitis/painful bladder syndrome. American family physician, 83(10), 1175-1181.
www.aafp.org/afp/2011/0515/p1...
8. www.auanet.org/guidelines/int...
#interstitialcystitis #MCAS #painfulbladdersyndrome #IC #mastcellactivationsyndrome
→ 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
In the middle of a flare here and this is the first time I've smiled in a week! Nothing works like a sense of humor--the good information is a plus! Thank you. Maybe I can live another day.
I just wanted to say THANK YOU for all of your videos! I was just diagnosed with bartonella today after a year of symptoms and thinking I likely had it. This is a special type of hell that I wish no one had to go through, but your videos have added a lot of information and, most importantly, laughter during an isolating and scary experience.
Aww thank you so much Stacey. Sorry to hear of the bartonellosis obviously but I'm glad you have a proper diagnosis. So many don't even get to that step or it takes many years to get to that step
"a special kind of hell"....all the best to you on your recovery.
For those that may not be aware, MCAS is also heavily comorbid with Ehlers Danlos which is a connective tissue disease. So when you think about her discussion of increased permeability of connective tissues (leaky gut or IBS, for example), consider whether you have many inflammatory conditions that seem unrelated. It may come back to a connective tissue disorder and starting with a EDS evaluation is another place for investigation and diagnosis. I am one of those with EDS, MCAS, POTS, IBS, IC, anxiety disorder, (and on and on). The most common form of EDS is hypermobile and there are plenty of people with hEDS don't think of themselves as being particularly flexible.
Hi Jake!
This is the most fantastic and digestible explanation, full of legitimate information, that I have ever seen.
You put in a lot of effort, how much you care is palpable.
Your intellect speaks to me and you're quite funny, too.
Dozens of doctors over decades couldn't tell me anything besides it being my own fault due to x, y or z that I "controlled"
I have spent years trying to heal myself and to get answers through many doctors.
I knew some of this due to my research but You DID THE DAMN THING HERE.
I was diagnosed with IC in 2014 but I was never told about this dx and never offered treatment.
He told me I was being dramatic, a tale as old as time...
Now I can barely walk, can barely speak, areas around my heart and other organs are inflamed blah blah blah etc
lol
The biggest problem is that I only found this diagnosis in 2021 after requesting med records to new care providers.
They are making women suffer by giving us 0 useful information at the appointments we had to beg and wait for, our dedicated research is nearly nonexistent, healthcare is still barbaric as shit and they're just making it worse, in 2023!
I've only just found you and I will get at these other videos soon. I took notes here and plan to take more. You understood me on so many levels in just a few minutes.
Thank you so very much. I appreciate you more than you could know.
ps: I'm scheduled in several months for allergy/immunology so wish me luck and if you have any tips for appointments let us know
I loved your video! I shared it to all my groups! Great Fun! So appreciative because if I'm searching out information then it because I'm really miserable and alone on my phone attempting to find better answers! It felt like a wash of relief come over me the first time one of your cracks come across! And that in itself was beneficial let alone you kept me humored and well educated because I enjoyed hearing this information! I hope you keep going with this as much as possible! Its wonderful to see you well supported with a cheerful attitude!
AWWW thank you!!!! Your comment and sharing my video means so much to me!! Especially since these videos are so labor intensive. I'm sorry to hear you're miserable so I hope that subsides ASAP
Thank you for all this wonderful information! My mom and my daughter have been researching our medical issues... from anxiety to hives to IC to biotoxin illness, CIRS.
I know I have mast cell problems and I can’t work but no medical doctor understands!! 😢
It’s good to know that we are not alone in our struggle. Thank you so much!
Aww thank you so much Teri! I am so sorry to hear of your family's medical issues but I am glad you found my channel. May we all make health gains this year! ❤️
OMG! Decades waiting for this information!! Many doctors
Glad it was helpful! ❤️
I was diagnosed with IC and it was then changed to neurogenic bladder... also have Ehlers Danlos and suspected Mast cell... I pray for anyone with this... bladder pain is the worst!
Bladder pain can be so unbelievably debilitating. Sorry to hear about yours!
Thank you for info & much needed humor! Please do an interview with urologist Dr Rachel Rubin.
I was diagnosed with ICS 45 years ago! I received zero treatment. (Of course!) I eventually learned to drink a ton of filtered water everyday to decrease pain. Your video reminded me that I have been dealing with ICS but the focus on it has been buried beneath such a long list of other symptoms and days spent swallowing countless supplements over the years 😂😭...so, thanks Jake! (And thanks for the laughs.)
Even I was recently told by a doctor there is basically nothing you can do for it! Not true! At least the internet has given people a wealth of information about health that they wouldn't have been able to access before. And always makes my day to hear that I made someone laugh!
@@BartonellaBabe Still they say there is nothing you can do??? Do these doctors not get any upgrading in their education OR LEARN anything from their patients??? Yah...despite all the limitations you live with you have such a refreshing sense of humour. Have you considered becoming a comedian?? xo
@@gilliani.4328 I truly don’t know what is wrong with them. I guess they’re just humans like the rest of us. And no never a comedian although I did to comedy improv for 8 years all through high school and college!
@@BartonellaBabe Doctors... 😩I mostly have stopped going because I know more than them now. And many are beyond frustrated with their own profession and it’s restrictions. Ha! So you do have comedy 🎭 in your background!
First diagnosis I explored. Resolved with paleo, low histamine diet. Frequent urination resolved as well almost completely. VIP prescribed for CIRS resolved frequency 100%. Self-hacked has a great article on how to increase VIP naturally.
Not surprised that diet helped you! Glad to hear your symptoms have resolved 100%
Hi hope your doing great just a question I have urge to pee though after emptying my bladder wat could help me?
Hey, I had a few questions. I'm going to bring up MCAS to my doctor. A lot of my symptoms seem to be triggered by anxiety. Its like I get anxiety, then that triggers muscle tension, upset stomach, blurry vision, and more, its like it all starts to spiral. I am also really sensitive to food, I don't eat very much because of it, plus I have this post-nasal drip, throat tightness, difficulty swallowing, itchy eyes, runny nose, situation that is getting worse. It feels like I have Allergies, strep, and stomach virus at the same time. Woo. Could this be MCAS caused by Bartonella? Also, why does Dr. M start with Rifampin then switch to Rifabutin. Why not just start with Rifabutin, I ask because Rifampin can cause tendonitis and I am already dealing with really bad tendon issues. Plus, I hear Rifabutin has better tissue penetration. So, I was just wondering why the Rifampin then Rifabutin and if its ok do Rifabutin first. Thank you :)
It sounds like it could be MCAS. It's hard because so many symptoms of so many inflammatory diseases overlap. Food sensitivities is a big one for MCAS but also for SIBO and SIFO.
Regarding the rifabutin: starting with rifabutin, even with a low dose like 150 mg once a day can induce incredibly strong herx or herx-like reactions in people who have been on rifampin for months so imagine if you went straight to rifabutin, the herxes could potentially be dangerous. I sometimes wonder if a patient started at an extremely low dose of rifabutin compounded (like 10 mg), if that would go okay but I don't know anyone who has done this. Also, keep in mind that the vast majority of potential side effects from rifampin, like tendonitis, is probably a side effect of rifabutin as well.
I would get this stabbing hot sharp pain in my ovary and bladder with cramping amd heaviness. It was tender to the touch. Never was a known cause for it! Diet did help though. I have all these symptoms and was misdiagnosed with endometriosis, painful bladder syndrome, no uti bt symptoms and the most painful sex, everytime inwould have sex it was tender and painful in my bladder area . I swear u were god sent🥰😇
When I was using zerytec it helped me with all symptoms except my heart rate so I tried to increase the dose and this gave me horrible tachycardia I don't know explanation till now
Usually the second generation antihistamines don't increase heart rate like first generation antihistamines do but everyone is different and has a different combo of meds and comorbidities!
What test do I ask my doctor to test for MCAS and what type of Doctor would be the specialist for MCAS?
I would go on the MCAS reddit and on Facebook groups for MCAS and say where you live and ask for an MCAS literate allergist/immunologist. Most don't "believe in" MCAS or even know about it
Why uti needs to be avoided? Is it somehow related?
Low histamine and no sugar ,NONE for at least a month ,it's so hard ,I miss my food
It’s very hard! Hang in there ❤️
I wonder if Throat Coat tea or other things witt marshmallow root and slippery elm could coat the bladder. Hyaluronic acid as well. Instillation of DMSO or ozone are also both things that have been done. Many supplements with MC stabilizing properties also. Edit: Ah, ya that Dr.'s supplement seems reasonable. Alpha lipoic acid helped my urinary urgency. But it could cause redistribution of mercury in sick people.
Good to know ALA helped you! Hadn't heard of that before specifically for IC
I have to get my last mercury filling removed then , because i was told to use ALA for my burni ng neuropathy
Elmiron, hidroxyzine, and zoloft did not work for me.
Sorry to hear that none of those worked for you! I wish there was a silver bullet for all of our chronic illnesses but there isn’t and we just have to keep trying ❤️
I have hydroxyzine bt it makes me drowsy and I hate that.
80
Percent of ibs is also mcas.
That's quite the statistic! Is there a paper that shows this that you can send me? I would love to read it 🙂
the coolest thing I learned in this video is that your middle name is T
especially because I don't have a middle name at all
😂 I have my mom’s last name and my mom wanted part of my dad’s name in my name and his first name is Tad so that’s what the T is for! And wow you don’t have a middle name?! Well now that I’m thinking about it, middle names are pretty pointless