→ 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 think you are amazing!! I don't know how you make the videos so informative and cheerful. Its truly amazing to me to witness someone that's been so brutally affected with this terrible affliction sound so pleasant and cheerful in your videos! I am sending much love and support for you and your family!! If anyone can figure this out, its going to be you. Stay strong and keep fighting. I wish I could give you a big hug! I've been strugaling for two yrs with a mysterious something and it's gotten worse while I'm being told that "we can't find anything wrong" "Its just stress" Bulldogs!! I've been tested for lyme 4 times... negative everytime. But the syptoms are of lyme or something like that... I dont know! I've developed burning skin all over, joint pain, muscle loss, fatigue, tinnitus... awful tinnitus!! Blah, blah, blahhhhh.... its Bulldogs!! No insult to Bulldogs! It sucks!! You are amazing! Please stay strong and keep up the good fight!! Love your channel and love you!! P.S. your mom is cool!!
Aww your comment made my mom cry (in a good way)! Thank you for your comment Marcel. It's a daily battle over here but it sounds like it is for you as well. If you haven't yet been tested for bartonellosis and evaluated by a Bartonella literatre medical doctor, that might be a path to pursue. Here is to better health for both of us in the future!
Indeed! Thank you for that, I hope we get better soon. Please keep doing what your doing! It's a blessing to see your cute face and personality... love it! You rock! It makes me almost cry sometimes when I hear your stories and how you explain it. Yet you do it in such an incredible upbeat and fun way... oh and very smart ! You know it's up to you to figure this thing out! Doctor's are going to give you pieces of the puzzle you need to fill in the missing pieces and try and figure it out! No one else will. The biggest thing I've learned from my "mystery illness" is that I've been to over 10 different specialists for all kinds of testing and they read one comment from one Dr. That thinks its "stress" or whatever and every Dr. You see after him mindlessly goes with that or won't take you seriously! Please believe me when I say... your mom is COOL and a saint! Love!! Its what keeps things together!! LOVE!! Thank you, thank you for this channel!
woaaahhh this video could not be more timely! I was recently given a "suspected mcas" diagnosis (from a doctor recommended by kathleen from fb!! woo!!) despite a negative tryptase test because of all the reasons listed in the video - I did the test through the a large commercial lab that rhymes with pest who definitely did not have their shit together. I've recently become a bit of an afrin "stan" as the kids say, the impression killed me. at least he didn't call you hannah montana in the email. also, unrelated, but from your instagram post a couple of days ago I just wanted to say thanks for still putting up videos despite it all. even the prefilmed content runs out or you just need a break, we'll still be here for whenever you're ready to come back. sending love
Bahaha thank you! I thought my impersonation was pretty good given the differences in how deep our voices are 😂 I think he is still skeptical of bartonellosis but one day the research will be so compelling he will have to give in. And thank you so much for the last part of your message 😭❤️sending love back
Hi ladies! Been feeling like absolute garbage for the past 10 years. Long story short doctors aren’t really helping. Do you recommend anyone to make an appointment with? Thank you!
@@Reber7804 yes I would join any health groups you think are applicable to you on Facebook, whether that be MCAS, Bartonella, etc. and join and ask for doctor recommendations in your area. Good luck! ❤️
As you age it catches up with you quickly. Be prepared for that. The damage accumulates. This is not a passive thing it has aspects of a degenerative process.
Thank you so much! ❤️❤️It's A LOT of work to read all the research but I didn't want to be like other health channels where I just spew off whatever sounds good or is trendy at the time
@@BartonellaBabe I read the research too, but sometimes it is overwhelming, especially when I am in a flare. It is so nice to have it all listed for when I can get to it. It also gives me more confidence you know what you are talking about. There are a lot of armchair experts out there. Your experience is a bit discouraging- I’ve had some of these tests and my levels are in the normal range. The lab did not treat the samples with any particular care so now I suspect the results are skewed.
It’s overwhelming even when not in a flare! And yes I would suspect the lab did it wrong. I went to a lab that had been “vetted” by my doctor and they still did it wrong 😑
I'm on year 16 of MCAS that we now find that it is caused by a genetic mutation called Hereditary Alpha Trytptasemia..you can get your urgent care or ER to test tryptase during a reaction. But if anyone has a tryptase of 7 or 8, you could get tested on genebygene for $160 for the genetic mutation of Hereditary Alpha Tryptasemia (HATS). They say 8 for tryptase is the cut-off, but I have seen a few patients on the group with only 6.5 and I have 7 tryptase, and I have triplication mutations which usually means more triggers, and I have beta mutations, not alpha, basically I'm f'd. Although I am only 7 for trytpase, I am very positive for HATS. PS Jake, I've been on this journey a long time and you are so spot on and smart! You got this. I follow this because my sibling has Lyme. Thanks for your information. IMPRESSED. Trytpaste reference range up to 11.5, they recommend that anything above could be suspect for systemic mastocytosis or else a kidney disease. But just because one is below 11.5 doesn't mean normal. Good health to you!!
@@lukeskywalkerlucasfilm GenebyGene is the only one I know that has the test. I am on anti histamine blockers. Histamine 1 blockers are the Benadryl's and Claritin's, Zyzol's. I found my best ones for me are Claritin and Benadryl. And Histamine 2 blockers are Pepcid or formitidine. Also Tagamet (cimetidine). Zantac (ranitidine) was our go to-but it was banned a few years ago due to cancer connection. And I had to ease into all of them, I was so reactive. Cimetidine, I can only take a tiny tiny 1/16 of a dose. It caused me to be very thirsty. So be careful and talk to your doctor. Many take without trouble. I have to desensitize everything. Also, I take Cromolyn Sodium which took me a year to get to a full dose. That was the best medication for me. And figure out what foods you are reactive to with an elimination diet.
Wow...you have an excellent memory! You can remember all of those statistics and lots of tricky words! 😀 most people these days have awful memory. You must be doing something right. Keep it up!
Oh the irony when the test to test this condition is 1000 times more sensitive in its nature than the person who is considered the most sensitive people in the world it seems to have the test that is the most sensitive in the world to detect the sensitivity. Absolutely ridiculous that anyone would expect a diagnostic criteria to rest on any of these testing modalities. The bar isn’t even a bar the hoop isn’t even a hoop and yet they are saying you must be able to clear the bar and jump through the hoop and yet their bars and their hoops Are full of blank spaces and holes making them completely in adequate measures of anything. At this point I’m tired of the past that Afrin goes to the medical profession there is negligence here in regards to all aspects of the patient having access to a proper diagnosis based on symptoms vs their faulty texting criteria. In the legal system and lack of knowledge of the law is not a pass it’s not a get out of jail free card just because you don’t know it if you break it you’re still guilty in the medical world they can just go oh well we don’t really know we weren’t really tight this they just really don’t get it well where is the accountability this is negligence in practice. When it comes to childcare or elderly care or disabled care the people caring for them can’t just go oh well we really weren’t taught that in school and so we really don’t know how to take care of one another and so therefore yeah well it’s understandable we get it wrong sometimes now that doesn’t happen there are governing regulations that come in and say this is negligent this is abusive this is not OK. Dr. Afrin yammers on and on and on and on and on and on kind of like this comment😂. Always making an excuse and giving a pass to the medical profession and his comrades and yet he is just so much wiser and does so much more due diligence than all of those that he gives a pass to. I’m very thankful for his work Very thankful and his stance of looking to symptoms and treating symptoms but there’s still an adherence to diagnosis based on continuing to try to press forward criteria Based on testing that is just inefficient and too sensitive to be a good measure of diagnostics for the criteria and yet he just continues 22:32 to do so, Saying that it’s important and so patience and people try to jump through these impossible hoops and in my opinion that’s patient abuse. Your video basically just lays that out perfectly like how could anyone expect anyone to trust these test because they’re not trustworthy and yet you can’t just trust the patient to communicate and show and presents with signs and symptoms and receive a definitive diagnosis come on
Try to find a functional medicine dr...instead of allergy dr. Oddly the allergy dr dont necessarily believe in mcas...but functional medicine drs get it. Check out vids by dr Leonard Weinstock. He also has a very informative research paper. MCAS: A Primer for Gastroenterologists. He is working on educating other drs far and wide.
I had my urine PGD2 levels tested at baseline and then in a small flare and there was an increase. But I can't figure out what levels are considered a positive result for MCAS. Can you shed some light on this for me? PLEASE!!! PLEASE!!!!!!!
I've gotten this request before and I've just never done it because I can only eat five foods. Literally! So I'm not sure how entertaining that would be? I would be like a one minute video lol. Maybe when I can add back in more foods 🤞
I can’t eat anything either,so went carnivore. I have a lot of gut issues, SIBO and being tested for yeast. Plus autoimmune issues. Hoping going all meat will give me back some things, I know it’s not a cure, but my gut does feel a bit better not eating all the other stuff that hurt me.
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→ 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 think you are amazing!! I don't know how you make the videos so informative and cheerful. Its truly amazing to me to witness someone that's been so brutally affected with this terrible affliction sound so pleasant and cheerful in your videos!
I am sending much love and support for you and your family!!
If anyone can figure this out, its going to be you. Stay strong and keep fighting. I wish I could give you a big hug!
I've been strugaling for two yrs with a mysterious something and it's gotten worse while I'm being told that "we can't find anything wrong"
"Its just stress"
Bulldogs!!
I've been tested for lyme 4 times... negative everytime. But the syptoms are of lyme or something like that... I dont know!
I've developed burning skin all over, joint pain, muscle loss, fatigue, tinnitus... awful tinnitus!!
Blah, blah, blahhhhh.... its Bulldogs!!
No insult to Bulldogs!
It sucks!!
You are amazing!
Please stay strong and keep up the good fight!!
Love your channel and love you!!
P.S. your mom is cool!!
Aww your comment made my mom cry (in a good way)! Thank you for your comment Marcel. It's a daily battle over here but it sounds like it is for you as well. If you haven't yet been tested for bartonellosis and evaluated by a Bartonella literatre medical doctor, that might be a path to pursue. Here is to better health for both of us in the future!
Indeed! Thank you for that, I hope we get better soon. Please keep doing what your doing! It's a blessing to see your cute face and personality... love it! You rock!
It makes me almost cry sometimes when I hear your stories and how you explain it. Yet you do it in such an incredible upbeat and fun way... oh and very smart !
You know it's up to you to figure this thing out!
Doctor's are going to give you pieces of the puzzle you need to fill in the missing pieces and try and figure it out! No one else will.
The biggest thing I've learned from my "mystery illness" is that I've been to over 10 different specialists for all kinds of testing and they read one comment from one Dr. That thinks its "stress" or whatever and every Dr. You see after him mindlessly goes with that or won't take you seriously!
Please believe me when I say... your mom is COOL and a saint! Love!! Its what keeps things together!! LOVE!!
Thank you, thank you for this channel!
@@mr9146 thank you! ❤️
You are the smartest young person I have heard speak in a very long time. Thank you for this.
woaaahhh this video could not be more timely! I was recently given a "suspected mcas" diagnosis (from a doctor recommended by kathleen from fb!! woo!!) despite a negative tryptase test because of all the reasons listed in the video - I did the test through the a large commercial lab that rhymes with pest who definitely did not have their shit together. I've recently become a bit of an afrin "stan" as the kids say, the impression killed me. at least he didn't call you hannah montana in the email.
also, unrelated, but from your instagram post a couple of days ago I just wanted to say thanks for still putting up videos despite it all. even the prefilmed content runs out or you just need a break, we'll still be here for whenever you're ready to come back. sending love
Bahaha thank you! I thought my impersonation was pretty good given the differences in how deep our voices are 😂 I think he is still skeptical of bartonellosis but one day the research will be so compelling he will have to give in. And thank you so much for the last part of your message 😭❤️sending love back
Hi ladies! Been feeling like absolute garbage for the past 10 years. Long story short doctors aren’t really helping. Do you recommend anyone to make an appointment with? Thank you!
@@Reber7804 one of the admins the facebook group linked in the description keeps a list of bartonella literate doctors!
@@nintando thank you!! I’ll have to check it out. I’m pretty positive i have MCAS 🥴
@@Reber7804 yes I would join any health groups you think are applicable to you on Facebook, whether that be MCAS, Bartonella, etc. and join and ask for doctor recommendations in your area. Good luck! ❤️
Wow! Very well put together for the regular human to understand, thx for all your hard work and sharing for us! 👏🏼
This is really helpful. I’m now reactive to paper (cellulose) so having all the info and outline in one place is useful! Thank you ❤
As you age it catches up with you quickly. Be prepared for that. The damage accumulates. This is not a passive thing it has aspects of a degenerative process.
Thank you for posting your references.
Thank you so much! ❤️❤️It's A LOT of work to read all the research but I didn't want to be like other health channels where I just spew off whatever sounds good or is trendy at the time
@@BartonellaBabe I read the research too, but sometimes it is overwhelming, especially when I am in a flare. It is so nice to have it all listed for when I can get to it. It also gives me more confidence you know what you are talking about. There are a lot of armchair experts out there. Your experience is a bit discouraging- I’ve had some of these tests and my levels are in the normal range. The lab did not treat the samples with any particular care so now I suspect the results are skewed.
It’s overwhelming even when not in a flare! And yes I would suspect the lab did it wrong. I went to a lab that had been “vetted” by my doctor and they still did it wrong 😑
Thank you so much.
❤️
I'm on year 16 of MCAS that we now find that it is caused by a genetic mutation called Hereditary Alpha Trytptasemia..you can get your urgent care or ER to test tryptase during a reaction. But if anyone has a tryptase of 7 or 8, you could get tested on genebygene for $160 for the genetic mutation of Hereditary Alpha Tryptasemia (HATS). They say 8 for tryptase is the cut-off, but I have seen a few patients on the group with only 6.5 and I have 7 tryptase, and I have triplication mutations which usually means more triggers, and I have beta mutations, not alpha, basically I'm f'd. Although I am only 7 for trytpase, I am very positive for HATS. PS Jake, I've been on this journey a long time and you are so spot on and smart! You got this. I follow this because my sibling has Lyme. Thanks for your information. IMPRESSED. Trytpaste reference range up to 11.5, they recommend that anything above could be suspect for systemic mastocytosis or else a kidney disease. But just because one is below 11.5 doesn't mean normal. Good health to you!!
Interesting. I just got 5.8. Is that normal?
Thanks you for your feedback! Is GenebyGene good service?? What medication are you on!???
@@lukeskywalkerlucasfilm GenebyGene is the only one I know that has the test. I am on anti histamine blockers. Histamine 1 blockers are the Benadryl's and Claritin's, Zyzol's. I found my best ones for me are Claritin and Benadryl. And Histamine 2 blockers are Pepcid or formitidine. Also Tagamet (cimetidine). Zantac (ranitidine) was our go to-but it was banned a few years ago due to cancer connection. And I had to ease into all of them, I was so reactive. Cimetidine, I can only take a tiny tiny 1/16 of a dose. It caused me to be very thirsty. So be careful and talk to your doctor. Many take without trouble. I have to desensitize everything. Also, I take Cromolyn Sodium which took me a year to get to a full dose. That was the best medication for me. And figure out what foods you are reactive to with an elimination diet.
Wow...you have an excellent memory! You can remember all of those statistics and lots of tricky words! 😀 most people these days have awful memory. You must be doing something right. Keep it up!
Haha thank you! I also do a lot of reading and learning 🥴
Oh the irony when the test to test this condition is 1000 times more sensitive in its nature than the person who is considered the most sensitive people in the world it seems to have the test that is the most sensitive in the world to detect the sensitivity.
Absolutely ridiculous that anyone would expect a diagnostic criteria to rest on any of these testing modalities.
The bar isn’t even a bar the hoop isn’t even a hoop and yet they are saying you must be able to clear the bar and jump through the hoop and yet their bars and their hoops Are full of blank spaces and holes making them completely in adequate measures of anything.
At this point I’m tired of the past that Afrin goes to the medical profession there is negligence here in regards to all aspects of the patient having access to a proper diagnosis based on symptoms vs their faulty texting criteria.
In the legal system and lack of knowledge of the law is not a pass it’s not a get out of jail free card just because you don’t know it if you break it you’re still guilty in the medical world they can just go oh well we don’t really know we weren’t really tight this they just really don’t get it well where is the accountability this is negligence in practice.
When it comes to childcare or elderly care or disabled care the people caring for them can’t just go oh well we really weren’t taught that in school and so we really don’t know how to take care of one another and so therefore yeah well it’s understandable we get it wrong sometimes now that doesn’t happen there are governing regulations that come in and say this is negligent this is abusive this is not OK.
Dr. Afrin yammers on and on and on and on and on and on kind of like this comment😂. Always making an excuse and giving a pass to the medical profession and his comrades and yet he is just so much wiser and does so much more due diligence than all of those that he gives a pass to.
I’m very thankful for his work Very thankful and his stance of looking to symptoms and treating symptoms but there’s still an adherence to diagnosis based on continuing to try to press forward criteria Based on testing that is just inefficient and too sensitive to be a good measure of diagnostics for the criteria and yet he just continues 22:32 to do so, Saying that it’s important and so patience and people try to jump through these impossible hoops and in my opinion that’s patient abuse.
Your video basically just lays that out perfectly like how could anyone expect anyone to trust these test because they’re not trustworthy and yet you can’t just trust the patient to communicate and show and presents with signs and symptoms and receive a definitive diagnosis come on
Thank you! This is very helpful. I know I definitely have MCAS, but my allergist said I can't have it because my tryptase level is normal.
Try to find a functional medicine dr...instead of allergy dr. Oddly the allergy dr dont necessarily believe in mcas...but functional medicine drs get it. Check out vids by dr Leonard Weinstock. He also has a very informative research paper. MCAS: A Primer for Gastroenterologists. He is working on educating other drs far and wide.
I had my urine PGD2 levels tested at baseline and then in a small flare and there was an increase. But I can't figure out what levels are considered a positive result for MCAS. Can you shed some light on this for me? PLEASE!!! PLEASE!!!!!!!
The lab should have a reference range for what is considered normal vs. elevated
I know I have this,so don’t think I would ever take this test, what a pain.
Great post Ms. Montana Math Maven. :)
Thank you TR Savage and thank you for using my proper title! Lol Been wondering where you went
@@BartonellaBabe Was under the MCAS "degran" and took a nap. Woke up, it was...either Thursday, or maybe March, not sure. :)
@@trsavage9778 time is but a social construct
What MEDICATION is everyone on for MCAS/Mastocytosis!???🤔
plssssssss do a what I eat in a day video
I've gotten this request before and I've just never done it because I can only eat five foods. Literally! So I'm not sure how entertaining that would be? I would be like a one minute video lol. Maybe when I can add back in more foods 🤞
I can’t eat anything either,so went carnivore. I have a lot of gut issues, SIBO and being tested for yeast. Plus autoimmune issues. Hoping going all meat will give me back some things, I know it’s not a cure, but my gut does feel a bit better not eating all the other stuff that hurt me.
Still waiting
Know I need a formal diagnosis
hope you get one soon! ❤️
What the hell do I do. I have shit insurance. I dont trust any tests or any labs. What do I do...
Do u get heart racing all the time for no reason?
I do intermittently from Benadryl sometimes but I wouldn't say heart racing is a major problem for me
My Dr only ordered a tryptase test. Is this sufficient?
I go over all of that in the video 🙂 but in short, no it's not for MCAS. That's more of a test for mastocytosis
Dear Hannah Montana I hope you get your weight under control...
CANCEL BARTONELLA BABE
for cringeworthy attempts at humor