I had to stop Bartonella treatment AGAIN
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- Опубліковано 3 жов 2024
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High-quality, peer-reviewed 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. 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).
5. Breitschwerdt, E. B., Maggi, R. G., Duncan, A. W., Nicholson, W. L., Hegarty, B. C., & Woods, C. W. (2007). Bartonella species in blood of immunocompetent persons with animal and arthropod contact. Emerging infectious diseases, 13(6), 938.
www.ncbi.nlm.n...
6. Kalogeropoulos, C., Koumpoulis, I., Mentis, A., Pappa, C., Zafeiropoulos, P., & Aspiotis, M. (2011). Bartonella and intraocular inflammation: a series of cases and review of literature. Clinical Ophthalmology (Auckland, NZ), 5, 817.
JOIN our bartonellosis support group on Facebook called BREAKING DOWN BARTONELLA:
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Best diagnostic testing:
www.galaxydx.com/
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#bartonella #bartonellosis #bartonellababe #mcas #mastcellactivationsyndrome #jakepicker
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✩ Thank you for supporting my hard work and my channel! See more ways to support my channel below.
✩ 25% of all MERCH proceeds go to the Bartonella Project at the North Carolina State University College of Veterinary Medicine. Link to donate directly to the Bartonella Project:
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
✩ OTHER WAYS TO SUPPORT MY HARD WORK: I believe that everyone should have access to affordable, high-quality healthcare and I also believe that people should be compensated for their hard work. If you appreciate my hard work, research, and advocacy, you can also support me via PayPal and Venmo. You can find me on PayPal with my username @bartonellababe or by searching Jake Picker. My username on Venmo is Jake-Picker. No one needs to support me in this way and please do not gift me if you are not in a position to do so!
✩Instagram: @bartonella_babe
✩Facebook: facebook.com/bartonellababe
✩Inquiries: jakethebartonellababe@gmail.com
Jake, I want you to know that all you did was not in vain, the resources and information you’ve left behind is your legacy. Watching you in such agony truly breaks my heart as I too have fought this disease and have seen the darkest times of my entire life in the last 5 years.
Your frustration, confusion, desperation- I feel it all because I’ve been grappling with the same things too, your story is our story and those of us who’ve been completely broken by this disease know the pain and isolation that gos with it. I’m much better than I was at the beginning of my journey but I’ve been forever traumatized and I want to thank you for giving me and your viewers hope, joy and direction with how to treat this awful disease.
I cried last night and said a prayer for you because I know that you died suffering and it’s just too close to home for me. Rest in power Jake, you made a difference, thank you 🙏🏻
Rest in peace angel you were so intelligent and I am so sorry for you and your mother. I hope the afterlife is kinder to you than this life was. No more pain. Fly high jake 💔 Thankyou for pointing the way for me to start treating this horrible bartonella, and Thankyou for being the reason I have a whole support group behind me.
Rest easy girl. Warrior ❤😢
I know exactly how you feel sweetheart. I so get this. Love you. ❤️😘 Hugs hugs hugs. I just made a list for my pastor of all the symptoms and all the things and all the ways that Bartonella has affected me because he wants to help me along with two other people in my church and it was absolutely heartbreaking. Thank you Lord I have people that want to help me like this.
Your pain and fustration resonates with me and my daughters suffering. Its a daily battle fighting this horrible illness. Your bravery sharing your story provide gives me strengh as a mom. Big hugs
Thank you Joanne. It IS a daily battle and I am sure your daughter is lucky to have you working so hard to get her well ❤️
I think I cried with you this entire video. I’ve been going through this exact same thing and it’s very depressing
Oh wow I can relate so so much. Having an invisible illness, being so much sicker than you seem. "If I think too hard about what my life is...." Not being able to stop talking about buttholes. I relate to it all. No advice from me, I'm in the trenches right now, but I'm just appreciating you so much. Thank you.
Well let’s just hope all of that stops except not being able to stop talking about buttholes. That one can stay. Thinking of you baffledwaffle! I just had to type that again
Jake you hit a chord with me with this video. I also just recently hit a low point in my treatment and took many, many steps back. I came close to really hurting myself. Everything I have tried has backfired and many times I have pled to God for help and mercy.
I feel your pain and sense your lack of hope. All I can tell you is that you can never give up. No matter what happens. Never. Also I am praying for your wonderful mother because I can not image seeing my child suffer like this. God bless you both. You will prevail and you are NOT ALONE! We are with you. I am praying for all of us.
Thank you so much Brian. I’m so sorry to hear of your set back. It seems like we all experience so many and it’s par for the course. But I think almost all setbacks are able to be overcome so I will be thinking of you and we will get there!
I so get the shame piece! Only a few minutes in, but I get it . . . I used to share on YT all my protocols, etc, etc., but I haven't in a long time because it's just so hard not to report progress. It feels like my fault, even though I know it is not.
It's definitely not our faults!! And people have so many opinions on why we might not be making progress, which is another reason why I sometimes don't like to share. I know they are trying to help but I will ask for input when I need it. That's obviously different than them shaming us, which I think almost no one does except we do it to ourselves so we should SNAP OUT OF IT lol
@@BartonellaBabe Totally!!! I recently posted an honest Instagram (which I do rarely these days), and I immediately got two suggestions, and they triggered me. I finished the video. I totally get how thinking about our situations will legit lead to a panic attack. I try to not let myself go there, too. Also get the lack of motivation piece. I have screenwriting homework that I'm behind on for this online class I'm taking, and it's just hard to care. Everything can feel so pointless quickly for me. (Thankfully, I have the motivation sometimes, but it is very lacking rn due to hopelessness/depression/symptoms.) I AM SO FUN :D
P.S. Hope you can start treatment again soon! I'm so sorry!
@@avivapeltin well hopefully you will find the motivation or procrastination and anxiety will outweigh the depression lol. I've had that work to my advantage in the last few videos
I can 100% relate to what you are feeling. I don't have a miracle cure, or miraculous advice, but I'll try to relate some things that have helped me. First, Chronic illness is a son of a biotch. I've been dealing with similar issues as yourself since 2015 when I was bit by a tick. Since then I've lost my career (military), the ability to work, the ability to feel like a worthwhile sack of flesh, pretty much all my friends, and my ability to do things I love (exercise, sports, socializing with friends, even reading books on my worst days). I was in my 20s when I was bit. I'm lucky I have a wife that loves me. It looks like you are lucky to have a mom who loves and takes care of you. After six years I have found some methods that have helped me deal. Philosophies such as Stoicism and Buddhism have teachings that are incredibly useful for people in our situations. In addition, I try to practice meditation/mindfulness daily. Finally, one of the most empowering things I've done for myself is ACCEPTANCE. Don't get me wrong. I don't accept that i will never improve my condition, but I do accept that I am where I am and after years of illness this isn't just going away. I'm trying to learn to be more okay with the situation at hand. No, none of this advice is a perfect antidote, and yes, I still become overwhelmed and depressed at times , but I have noticed some psychological improvements. Don't feel bad about breaking down and crying. I say this as a man, I ALWAYS feel better after a good cry. I'm not afraid to admit that. Good luck in your future journey. We ARE going to improve. We just have to keep trying. :)
I am grateful for your channel and your bravery. It's given me information and resources and hope. After a year of doctor's shaming me and misdiagnosing me, I found a naturopath who said, "Yes, I know what this is. You're not crazy." Now the "doctors" shame me about the Naturopath treatment saying, "He's only taking your money". Like yourself, sometimes it's overwhelming + I cry. Anxiety is part of this. Recently, I decided to take one day at a time and try not to get too far ahead thinking about the future and just get comfortable that this will take time. To pull myself out of a funk, I like to act silly and be silly. I think that's why your channel appealed to me immediately. :) Your gift to this community is so incredible. And, big shout out to your mom, as your wing man. I'm surprised you can say b-hole on youtube, but good for you! Keep going, but only when you're ready. Thank you.
Bahaha yes I can use b-hole and f bombs with reckless abandon on UA-cam! I’m grateful for your comment. I think getting comfortable with this taking time is a great way to approach it (although getting to that takes time too lol). I’m happy you’re with a doctor that gets it ❤️
Just found your channel. And everything you said is spot on. It's been 2 years since the symptoms started and 6 months since I started treatment for both Lyme and Bartonella. Docs believe I'm also dealing with Babesia and MCAS, but that's just in talks for now, waiting on tests, I think. I have huge shame because I cannot work, and if I cannot work, then I cannot support my family, which makes me feel like a failure. The junk is in my brain which makes my hands not work very well, or at all at times, facial tics, seizures, massive amounts of pain everywhere and I'm stuck right in the middle and I have no way out. I'm completely lost and loosing hope. I have no coping skills except to vent to my amazing wife who is super supportive. When all you can do is lay in bed and veg, you tend to start thinking why is this happening, when will this end. So I don't know-thank you for reading this.
I can totally relate to much of what you are going through and I am so sorry to hear about your illness. I am happy to hear that you have a supportive wife though. If you haven't joined our Breaking Down Bartonella support group on Facebook, perhaps you would find additional support and a community there with us ❤️
Yes much shame for many reasons too many to list, saw a study on two dogs that had bartonella Hensley and it was noted that it made the dogs hide in fear along with other symptoms and it made since to me and the cellular effects of bartonella are just the beginning of the phelethra of shame, fear and lack of normal confidence those infected deal with because bartonella attacks the body in so many ways its beyond not normal in fact when I first had bartonella not knowing what it was I thought I must have gotten on an elevator with an alien and caught something cause this stuff seems out of this world....man I just saw some replies insinuating bartonella babe R.I P. I hope your OK cause your wonderful and such an encouragement a leader with style and class for the cause of cureing bartonella and I thank Jesus for you
I want to give u a hug. I so understand how u feel. I been through this for 18 years. No body understands and they think they know how they would handle it.
Yes it's very very hard. I don't know what I would do without my mom. I am sorry to hear you've been struggling for so long
jake - I can 110% relate. I've been trying to push through holding down my job and now I'm at the point where my body has shut down and I just can't. Urgent care visits for fluids, etc. the works trying to answers from 10 different specialists. The way I *kind* of cope is that it's not "my choice" that I'm not doing what I want to do, that takes a lot of the pressure off of me mentally about not working right now to focus on my health. Shit has really hit the fan lately.
Also, I can totally relate to the feeling and fear of your GI tract just not moving, working or not doing anything. I'm being evaluated for gastroparesis right now and have been following a pretty limited liquid diet/low-fodmap diet. Could be SIBO, still need to be tested. Nothing is happen urgently enough. Seems like no matter how much I'm able to consume I'm losing weight every week. I can tell that there is just no activity in my stomach or intestines, nothing is moving or I just throw it all up the same day.
Hang in there. Also for good measure - butthole.
I'm so sorry you aren't able to work now and I know how that feels but it sounds like you 100% made the right decision. BAAHAH I started to type before I was done reading your comment and just saw butthole 😂😂 butthole ftw!! Yes! SIBO test ASAP. It's freaking insidious and literally almost killed me. Please check with a knowledgeable doc about how a liquid diet might affect the SIBO test (false negative) unless you have already done that. Sorry for giving unsolicited advice. I hate when people do that to me lol. It sounds like you're in a really tough spot and I hope you can figure stuff out soon!!!!!
@@BartonellaBabe thank you!!! haha. and wow good to know about the liquid diet and SIBO test interactions, ill send a message to my GI doctor to see what's up with that. thanks for pointing that out because I would have never known that could mess with the validity of the test. and thank you!!! sending good vibes your way
Yeah that would freaking suck! The liquid diet might move food out faster than normal so you don’t have as much fermentation from the microorganisms l, hence the false neg. good luck ❤️❤️❤️
@@BartonellaBabe ty!!! :)
Jake, thank you for your honesty. We need more truth around this horrible illness. The content you have on your channel is invaluable to us, including this one. 😘
Thank you so so much for watching and your sweet comment Lisa ❤️❤️
I know exactly how you feel sweetheart. I so get this. Love you. ❤️😘 Hugs hugs hugs. I just made a list for my pastor of all the symptoms and all the things and all the ways that Bartonella has affected me because he wants to help me along with two other people in my church and it was absolutely heartbreaking. Thank you Lord I have people that want to help me like this. Praying for you sweetheart
So glad you have people that want to help you too! And hugs received Tara! Sending hugs back
Jake
Sending you love, hugs and prayers.
We feel your pain, frustration and struggles with this.
We also feel your humor, your love for your mom and your wanting and caring for others. Your vids bring that out because you are an honest human. You share your good and bad days with us. I want you to get better!!!
Have a good night.
Thank you Lloyd for watching my good days and bad days. Your love and hugs and prayers are warmly received. I hope you have a good day ❤️
Sorry you're having such a hard time. I hope things turn around and you feel better. I will keep you in my prayer.
Thank you so much! 😊 ❤️
Sweet Jake. I'm SO sorry you are going through this. Thank you, as always, for being so eloquent and sharing pieces of yourself and your journey that most of us would never have the courage to do.
One thing I do, which is minuscule I know, is to try and reframe how I am seeing the illness. I refuse to take ownership. I will never say 'my bartonella'. I say " THE bartonella" It's not a part of ME, it's an experience I am having. And by thinking of it like this I feel I have more control (real or imagined) and confidence that I will move on from it some day. Something tiny but just a mindset thing that helps me a little.
I've also taken a break from socials when it comes to my health. I needed it and it's helped me a LOT.
You WILL get through this and nobody deserves it more. You've helped so many on this journey and karma is going to be good to you. x
Hi Chantal! I was wondering where you went and glad to hear from you. I really like not saying “my Bartonella.” How we use words can shape the way we think. That’s one of the only interesting things I learned in a Comm class in college lol.
And yes taking a break from social media can be very helpful, especially for some people.
Thank you for having faith in my healing and karma. I hope you’re right!! You better be right!!! Lol. I hope you’re making some progress? ❤️
You just described the last five years of my life 🙏🏽 Sanity comes from other people who go through what I do. And especially those who are willing to put themselves on UA-cam 😆 Thank you for your videos. Very grateful.
Thank you Mark! Grateful for you as well! And I’m sure your subscribers are too for your honestly and vulnerability on UA-cam 🙂
I'm so sorry you are having such a hard time. I have MCAS, candida overgrowth, SIBO, gastroparisis, POTS, & liver disease. I was in pretty bad shape before I started trialing mcas supplements on my own. Most of my doctors are not hands on enough in my opinion to actually help me when it comes to MCAS. I like you was not able to treat. In my case it is the candida. I could only get 3 days into the antifungals before my mcas went wild. It's so frustrating! I don't want to make it sound like I'm all better now but I am better than I was at my worst. Its okay to need to take a step back and address MCAS. It sucks but you have to make improvements in MCAS eventually so it's now or later. Just be patient with yourself and keep trying different treatments. It's a road you will have to travel anyway.
Yes and the nutrient deficiencies are a really really big deal. Five vegetables for ten months really is so bad and then a restricted diet for two years before that. It really throws all the metabolic pathways out of wack. SIBO was huge for my MCAS. I think SIBO and SIFO should be considered in every MCAS patient but especially those with severe GI symptoms. Hopefully this will start happening for other patients more quickly
Sending you so many hugs! You’re not alone. ❤️
Thank you!! ❤️
Jake, a hard part of this illness is that its sorta invisible. Most of us look relatively healthy so doctors and people think its in our heads. I used to bodybuild prior to being sick, and I still retained some of the muscle I once had, but this has caused so many physicians health care workers to think that I'm fine and healthy because I have a tiny bit of muscle. When in reality I'm depersonalized, in severe neurological pain and stay in bed 90% of the day. I keep telling myself there is research being done and many doctors who do recognize the problem. Hang in there, I break down a lot too. Practically turn into a child, which doesn't look good on a 24 year old guy. Theres no shame in crying, especially considering the height of this mountain were forced to climb. We will get better Jake. Were too smart and anxious not to lol. Also uncertainty absolutely sucks, and everything about this damn illness is surrounded by uncertainty.
Yup I totally agree with everything you just said. I break down and act like a big baby all the time but I don’t judge myself for that. My patience is none. I love “we are too smart and anxious not to” I totally agree. We just have to be persistent and patient
Are u on antibiotics
I love your ability to comment your feelings so well. You are a remarkable young woman and though I just found you, I’ll be hanging around for awhile😌. Thank you for sharing❣️
Thank you so much Deborah. These are such hard illnesses so it's been a privilege to be able to show the world what we deal with ❤️
Rest in peace
I’m right there with you. I’m holding you hand hun. 🙏😩
We got this! ❤️🥴
I relate to you so much. Fellow Bartonella sufferer here. Thank you for your honesty because you remind me I am not alone. Praying for you dear Jake. You asked us to mention how we cope with the frustrations of chronic illness and for me it is through the belief that God is with me and is allowing this for some reason and that He will bring about a greater good somehow though I definitely wrestle a lot and feel a lot of grief, anger and frustration. I think I cope a lot through good comedy, laughing at goofy UA-cam videos and finding fellowship with other sufferers and encouraging them. May God help us all to find peace and meaning and persevere until we are totally healed!
Hello fellow Bartonella buddy! Welcome to this club that no one wants to be in lol. I’m glad to hear you have found coping strategies that work for you. UA-cam makeup videos is what has gotten me through much of my illness lol
Make up videos sound fun, plus your makeup is always so pretty :) its always nice to look really good even when we don't feel so good.
I’m so sorry Jake. Never stop fighting. My low back issues are relentless and I have days where I just want to give up but I remind myself of one goal. Just get through the day. Sending positive karma your way.
Hey thanks for your comment Randy and thank you for sending me positive karma. Sending some right back at you. Every day is so hard
Ugh I really love u so much jake and these videos are a gift. You are such a beautiful person inside and out, you have absolutely nothhhing to be ashamed about. You work so hard to understand this illness and take full responsibility of your healing, you take on way more than most do. It is literally not your fault that the human body is such a complex mystery and does things that are unfair and make zero sense. Jealousy and anger is natural too!! I hate that you’re going through this and I’m sending u lots of love and a big hug. I know you’re going to get through all of this it’s just a really shitty process and I hope it all hurries up!!! ❤️❤️❤️ I love ur mom too sending u both love
Hi Sideara!! Thank you so much for your comment. It’s so hard over here for both of us. I just want to get better so I can spend happy times with my mom not just “happy” times. Thank you for having so much hope in my healing. I don’t know why but I really needed to hear that so thank you. I guess it’s because I don’t want people from high school and college thinking I’m not going to get better. I don’t know why I care if they think I’m not going to get better! But I guess it’s just another weird feeling among many weird feelings. Anyway thanks for your comment Sideara and I will see you at the reunion hopefully! Whenever that is lol
I'm so sorry that you are hurting. I don't know if you've already explored this possibility, but I just recently discovered that the root of my MCAS, food sensitivities, thyroid issues etc. etc. is toxic mold exposure. I've heard that people who are struggling with Lyme and other infections often have mold as the underlying issue. We found toxic mold hiding in the basement of our 6 year-old home. My husband doesn't seem to be effected, at least that we know of, but we've lost 2 dogs since living in the new home. One was only 4 years old. I had mycotoxin testing done through a hollistic/functional doctor. Sending you virtual hugs.
Same here. Mold and bartonella symptoms overlap significantly. I have not been able to get away from mold exposure, and MCAS symptoms have now gotten significantly worse. Living in my car in the backyard but still getting hit with mold toxins coming from the house. This is the 3rd moldy house I have fled from. It’s a nightmare.
Thank you for the virtual hugs and sending those right back to you! Luckily, mold is not one of my issues and has been looked at thoroughly
@@MM-d289 I'm so sorry you are going through the mold nightmare too. I've been in a hotel for almost 2 weeks. I'm hoping that the new apartment that I just leased sight-unseen is mold free. I was only able to get a virtual tour of a similar model. Not much out there that is pet-friendly. I need to get my dog out too.
Thank you for your videos they helped me alot
I’m so sorry for all you’re going through! I just got diagnosed this week with Bartonella and suspected Lyme and I’ve been suffering for two years with such strange symptoms and being written off…I can relate to so much you say. Thank you for what you do. Your videos are delightful and important; What a good mix! I also am PMSING so I started crying with you before I even knew what you were sad about!! 😂 Also, your mom saying “Nooo 😉 “ to them being humans too lol 💖💖
I am so sorry to hear about your diagnosis but at least you know what is going on now. And thank you for your kind message. It really helps because today is my birthday and it just feels like another year lost. At least I have my mom!! ❤️
I hope you have/are having/had the best birthday possible 💚💜💕💙 🎁 🌸 ☀️🌻🌺
I’ve always been too sick to treat too. Not sure how this is going to pan out. Bless you sweet soul. 🙏🏼💖
jake 😭😭 thank you for being honest and vulnerable. in a way your honesty and willingness to show the rough times along with the times where you feel okay enough to get ready and film a video fights the very social pressures that cause us as chronically ill people to feel shame for not getting better. there's this pressure to be sick in the "right" way. to not let people see the ugly side of illness. it's one thing to tell people that "I have xyz symptoms and it really sucks" but other people are removed from the reality of what it's like to actually experience those symptoms so their expectations don't match your experiences even if they're not intending to be malicious or hurtful. I think that disconnect leads to the shame. it's really isolating to be the only one who lives in your own reality of illness and it's even more isolating when you feel like your body is betraying you to the point where you feel so disconnected from everything you start to feel disconnected from yourself too. so thank you for showing your reality and making ours a little less lonely.
*ps butthole*
like I would've never thought that someone else knows what it's like to have an mcas reaction to their own tears but you're here! and I'm here! and it sucks! but at least it sucks together
NT!!! It is so so isolating to have people not understand our suffering but how could they unless they have gone through it? It's also hard to understand other people's symptoms when we have such different symptoms. Like I know psych symptoms can be so unbelievably devastating and debilitating but do I *really* know what that feels like? Hell no! Have I ever hallucinated? No (well, yes but it was at a music festival so that's different lol).
Thank you for sharing your pain. It resonates so much with me. I have had many digestive issues but worst symptoms from high sulfur foods which give me extreme pain, brain fog, feverish feeling, etc. I have an extremely restricted diet as I react to so many things, even potato, kumara, Bananas etc. Sometimes I start feeling the same as you, and get really frustrated that this is going on for years without me working out how to fix myself. No one seems to understand, doctors can't help, and other people just get annoyed and say why aren't you healed already. I still don't really have any answers. Sometimes during a flare up I feel so hopeless that I will have panic attacks. Thank you so much for sharing your story as I feel like you are someone out there that understands similar symptoms/pain and I don't feel as alone.
Thank you for your comment and I totally sympathize with the limited diet and sulfur sensitivity. I'm glad that my video helped you feel less alone and I really hope you can get the answers you deserve soon
Oh Jake it really is so rough! Someone once told me that healing is not linear, and that's so true. 2 steps forward one step back. One thing that I have done to help rebuild my body, not to treat anything, just to rebuild is hyperbaric oxygen therapy. Maybe there is a clinic near you that offers it.
How to deal with shame? Hmm I have a hole on my intestine that won't heal, its kept open with a thread to stop me getting sepsis I have had butthole surgery 14 times, and had my butthole looked at 4000009 gazillion times. At the start I found it so difficult, why did it have to be by the butt?! But, through intentional inner dialogue I have taught myself not to be ashamed. I would say things like "it's just a body part to the doctors", "everyone is here to help to, they want you to feel at ease". I would reflect on what I would say and feel about this happening to my partner, and turn those emotions and thoughts towards myself. With practice and time, I learned to not be ashamed of it. Does that mean I never break down and just hate everything? No of course not, I'm only human, it's completely normal to do that. Forgive yourself for being human, have compassion with yourself when you are at your lowest. Being strong does NOT mean you never fall apart and cry
Hi Line! I’m so happy HBOT is helping you!! And of course don’t feel shame about your butthole! Those doctors chose a job where looking at buttholes is completely normal lol. And treating yourself how you would be compassionate to your partner is beautiful! I love that! And you’re right that being strong doesn’t mean you don’t fall apart. Falling apart is human and we are all strong for still being here and pushing through. You’re very strong Line! ❤️
Awe.
Well said and hang in there!
*BIG HUGS* I can relate so much in my own illness. It’s so frustrating to juggle everything and appear “normal”, etc. We believe you. You don’t have to prove to anyone how hard you’ve worked or how much you are suffering. Right there with you. You are so strong, girl. I was feeling so defeated today and I realize I need to be gentle with myself too.
Also MCAS sucks sososos much 😭
Thank you!! I'm just really looking forward to eating more normally one day and being able to go for a walk. And yes be gentle with yourself dear wolf! lol
@@BartonellaBabe haha you too!!! We can do this!!!🥰
I completely feel the same. Crying it out every once in a while is completely unnecessary and healthy.
I am the train reck sweetheart bless ur heart ❤️ Thank u so much I couldn’t do it I can’t even function I’m on a rollator walker honey & im dying 70 years young & my life is OVER. U ROCK buddy!!!!!!❣️
This made me cry. I hope your ok. I’m in the same boat. I can’t start the meds for bartonella because of my twave inversion on my ecg and blanch block. I’m bedbound with joint swelling and severe pain. Thankyou for these videos x
Hi, Jake. You'd be surprised but I actually go through almost the same thing that you do (sans Bartonella, bUt I have endometriosis which is also lovely!). So I've got SIBO (probably methane+H2S) for 3 years,couldn't do anything about it because I lived in a country where this thing wasn't even known back then, and then moved to the US and started the research. I tried Oregano, but I couldn't tolerate it because of MCAS (well, that time, I didn't know it was MCAS, I thought I hade gastritis that just wouldn't heal).I should've taken veggie caosules istead of gelatin, but I didn't have that many medical XPs yet. So eventually, I did elemental diet for 2 weeks and it helped! I didn't get bloated anymore. But my stomach would hurt more and more and my descending and sigmoid colon started to hurt, and I would panick and research for months and months, thinking I was dying. I also didn't have insurance, because I'm an immigrant and don't qualify for Medicaid and I couldn't afford marketplace plan.
So basically, my symptoms were progressing and I would become sicker and sicker, and the brainfog and hair falls out in clumps, and I got insomnia. I still look fine and try to act like a normal human being, but I'm technically disabled, there maybe like 5 hours a day (usually in the evening) when I feel alright (like 70 or 80%, never ever 100%). And I'm only 28.
So I was researching all that mold and heavy metals for 2 years (!) , and then I found your videos on H2S SIBO (plus MCAS, plus histamine, plus sallycilates, plus sulfur - everything I have problems with too). And I thought, what if that SIBO didn't actually die, it just went one story down, like from small intestine to big intestine? Because everything started with SIBO. So I did a stool microbiome test (which is now miracuously available on walk in lab) and I'm waiting for the results. You know it seems like after 2 years of suffering I finally might have a real solution.
So I think I'll see the results and then I'll try doing a protocol with oregano and bismuth. It might f*ck me up even more, who knows! But I definitely had whole lotta herx from trying Oregano (vegan capsules) before (for UTIs, which I didn't know were from that dam' H2S too!).
So, yeah, see because of your videos I might actually get something done with all dat BS.
You're super fun, and your mom is too. Being that young and in such a poor health sucks tremendously, I know this too well. I used to have a mental break down at least once a month. I only have my husband who supports me through all this, no one else. Even though this experience is at times super dishertening, I know I'll never give up, even if I'll have to do FMT eventually. Like DIY FMT, this is how hard I'll go just to get better. LOL
I'll be keeping up with your videos, you can also AMA if you want. Cheers!
So sorry to hear about all your health troubles! And thank you. You're right my mom is fun 😉that's where I got it from lol. I hope you can figure out what is ailing you ASAP. The digestive system is a mysterious and serious one so when it goes wrong, it can be life altering. Hoping the best for you!! ❤️❤️
@@BartonellaBabe thank you, Jake. I really appreciate you making these videos, knowing that you're not alone in this gives the biggest hope.
I advise you to look into Elemental diet for SIBO, the homemade style (commercial products would definitely trigger MCAS). It's on Allison Siebecker site. When bacteria aren't fed for a while (2 weeks at least), instead of partially diying and becoming resistant to antibiotics, they just move down the GI tract to the colon where they inherently belong. When your small intestine is rid of SIBO, you're going to absorb your medication and nutrients needed to heal Bartonella much better.
Thank you! The elemental diet is actually such a great tool. My sibo is in remission now but my small intestine definitely needs time to heal. I’m working on the sulfur pathways and that’s really what is ailing me. I mean along with all the other things lol. Allison Siebecker is great! Maybe one day she will come on my channel 😉
I am currently recovering from Bartonella. I used Stephen Buhner's protocol to recover from Lyme disease, in addition to his Bartonella Protocol. I made an addition to the regimen that was a game changer: broken cell wall chlorella. In addition to L-arginine, Chlorella helped me tremendously to recover from the horrifying symptoms of Bartonella. Thought I would mention! Bless you and good luck!
I'm so glad to hear that you're recovering. Severe MCAS definitely complicates the recovery picture for me but I know that I will figure it out. And those sound like sound additions!
I'm sorry you are having so many set backs, and are dealing with so many serious illnesses at once. I can relate on many levels as I struggle with bartonellosis, Lyme and SIBO. You have been in my daily prayers for healing for months; by the grace of God we'll both regain our health in time 💗
Thank you so much Emily! I really appreciate that. These illnesses are very serious. We know bartonellosis and borreliosis can be very serious but damn SIBO can kill a person too! I don’t think most know that but the SIBO experts do. To better health for all of us soon ❤️
@@BartonellaBabe So true. Hugs!!!
Ugh! I get it. I Finally starting another round of treatment after being too much of a mess to continue for a while. It’s frustrating to be forced to stand still! Stay strong. You’ll get back to treatment.
One way that I think about it is that “treating it” is more than what we do to our bodies; it’s also the knowledge. So, every time you learn something, every time you get data or labs, and every time you research something for a video that you make, you are moving forward with treatment, even if you are technically stopping the meds for a bit. Keep it up.
Aww thank you so much Johnathan! That is a great way to look at it! Every time I find a new avenue or answer, I get a little bit of hope back. I have also been taking vitamins and a few days ago, I was able to add in a little bit of steak! And the motility drug is going well. So that's all technically treatment too
Hello. I have a similar situation. I have a microbiom disease, supposedly SIBO (the breath test not available in my country since the pandemic started), but I responded good to systemic antibiotics 3 times but the symptoms come back right after the treatment. My symptoms are gas production in the proximal intestine and burping hundreds times a day. I can't even work with that sh, so I had to quit my job. So right now my future life completely depends on my recovery, cause I CAN'T even meat my friends with all that. And I had plenty of time figuring it out, going deeper and deeper into the research and finally I understand that I can't give up untill I really get everything tested. I mean there's a long list of conditions that causes SIBO and I have to exclude every of them, furthermore I should test for SIBO first in this bloody country. But the point of all this is that we don't recover cause we ain't addressed what needs to be addressed.
So sorry to hear of your belching. I had relentless belching too before I treated my methane sibo. It was horrendous. I’m sorry you had to quit your job! I hope you can get to the bottom of your health mystery very very soon
@@BartonellaBabe Thank you for your reply! If you cured it then that's very promising! Tomorrow I'll call the only place in Russia where the hydrogen-methane test is available, but it's under repair so I'll find out whether they repaired it or not, I waited it 11 months...
I always love your honesty! Thank you 💗
I want to thank you from the bottom of my heart. Through your videos I was able to actually have some hope that my condition can get better and it’s actually not just in my head. I have been to the ER probably 10 times in the last few months and could not figure out why I was feeling like this. My reaction always started 1-3 hours after eating. So I was thinking either I am actually that crazy that my mind adheres to a proper protocol in inducing a reaction or it is just something which has not been found yet. I literally live in a country with the most uninformed incompetent doctors, so no help there. But since I have been trying to eat a low sulfur diet my symptoms actually improved. One problem though is that there is just one doctor here who treats SIBO and he doesn’t seem to competent. So I have to figure it out myself. Diet doesn’t seem to be a long term treatment.
The worst thing is literally your mind jumping between feeling kinda great (trying sports again, managing work) and just sitting there in agony and hoping it stops soon.
I hope you get your condition fully in check one day.
Sorry if this doesn’t seem to coherent, I’m writing this while having a small reaction again.
Your message was very coherent so no worries! I hope to one day walk again and eat somewhat of a normal diet. I’m sick of this bed! Sorry to hear there aren’t knowledgeable doctors where you are but I’m really happy the low sulfur diet worked for you. Not all sulfur sensitivity is due to hydrogen sulfide sibo. They often overlap but in my opinion they are two separate conditions. You can have one without the other. But if you’re not in the US, then you won’t have access to the hydrogen sulfide sibo breath test yet. Hopefully it will be avail in other countries soon
@@BartonellaBabe I did not see your reply unfortunately. I did the SIBO breath test for methane and hydrogen and apparently I'm also positive for methane SIBO, which explains why the only symptom, which did not match with h2s sibo was constipation for me. Now I kind of puzzled what to do. In what of your videos you mentioned that you treated your h2s sibo with rifaximin+nac. Do you have any resource for this kind of treatment, so I could maybe point my doctor to it? My current doctor just put me on pro kinetics, which do help somewhat, but obviously do not solve the underlying issue.
Oh my god Jake, so many things you say resonate so hard. I truly think a LOT of stuff that is blamed on herxing is potentially MCAS (or something else). If titrating up on cromolyn sodium has taught me anything, it's that. Every time I increase I get whole body aches, muscle twitching, increased reactivity etc. I feel like I have the flu. If I didn't know better, easily blamed on herx. So after that experience and knowing what symptoms my MCAS can truly cause (after thinking it was moreso causing my flushing/itching/mostly allergy symptoms), it really made me look back to times I wasn't on CS but experiencing similar flares of symptoms, thinking it was herxing. Also, you should see my email draft folder and the amount of RAGE emails I have written to my practitioners and not sent bahaha. And some that I actually have sent!
On that note, I have definitely felt shame during the process of self-advocating. I've felt shame for asking for and using accommodations through my university even though it's absolutely legitimate. As well, my B/LLMD/integrative doc took me on as a patient and then kept me waiting for almost 6 months for my first blood requisitions, telling me about once a month they'd get to it. Even though they are absolutely caring and lovely, they took on too many patients and I guess there were people literally on deaths door, but I was also experiencing increased suicidal ideation (I think from bartonella but also just general chronic pain), so in a way I was also on death's door, and I felt so fucking ignored. So I certainly sent some of my rage emails and texts, and then felt shame for doing so, even though all my friends who have dealt with similar situations emphasized how important and legitimate self-advocacy is. I also continue to feel shame every time I even try to describe what the fuck is going on in my body to my friends. I'm not sure why, because they all care and want to be supportive. But it just sucks to have your health be so complicated and hard to explain, especially when I don't "look sick." I feel like I'm taking up too much space with my illness.
To be honest, I'm still figuring out coping mechanisms. I have struggled with self-compassion in the past, because treating myself how I would treat a friend just didn't click for me (even though I love and support my friends!). However, I did start to think about my childhood self, how some of these issues started then, and how that self (and my current self) deserve support, and to not miss out on any more of life because of people ignoring my very serious health issues. So thinking about that helps me to have the courage to self-advocate.
I'm really sorry you're struggling to treat, and not being able to make linear progress. It is so incredibly frustrating to be doing all this research, trying to treat your body in the best and most compassionate way possible, and still have your body feel so out of control. I recently got up to 300mg/day of cromolyn and experienced some really great effects, and thought FINALLY I had figured out a major piece of my puzzle. My doctor increased my dose based on my response. Now I'm trying to increase but way more reactive and not even sure it's helping anymore. I also understand feeling jealous of those who can go quickly into treatment - it's nothing to feel shameful about because you obviously don't want to take away treatment from others. You're doing so much work to understand this disease and I just hope you feel at least a little bit less alone through the community you've built through your channel and the breaking down bartonella group!
Bahah I am sure the rage emails are scathing and good to hear you didn't send all of them 😉. And I'm sorry to hear about the CS. That's so demoralizing. Hopefully you can get that figured out soon. I feel like I have heard people say that with CS, more isn't always more so let me know if you find that to be the case for you too. The frustration of not being able to treat truly is indescribable and I know you get it because titrating up on CS is not something that happens over night so you're being brave and stay brave! ❤️❤️
@@BartonellaBabe Lol scathing is the perfect word for what they are! My ND did reassure me on that though, said something similar to what you said in that doctors usually know that it's coming from a place of pain and frustration and can compartmentalize. We don't need to worry about adding their wellbeing onto our plates, we've got enough going on and they understand we have to self-advocate. And thanks - you stay brave too!!
Hey :) I’m sorry to hear what you’re going through - I’ve been on a very similar journey. A huge improvement for me was taking methylene blue for my MCAS to block histamine, but not only that, it also helps treat bartonella and Lyme if you weren’t aware!! Just thought I should help somehow :) I see a lot of similarities between us two :)
If I was very alarmed when you said that you thought about “not doing Bartonella Babe anymore”, I’d say that is a sign of how Significant what you do with your Chanel is !
Don't worry! I'm going to keep doing Bartonella Babe. It's what makes me "happy" and it's basically the only thing I do (when I feel well enough)
I feel you. I'm in a similar position, not being able to treat just trying to maintain where I am to not regress as I react violently to almost everything. Also, because of Covid and a lack of funds, I can't try the treatments I would like to try. I'm just trying to hang in there/survive until I can make a move.
It's so true re practitioners putting every reactions on herxing when 90-95% of them are actually more bad reactions/intolerances to the treatment itself. I feel like I'm on my own as no doctors know what to do with me. That's why I became my own doctor/practitioner as I can only count on myself to find the pieces of the puzzle to get better.
I also used to feel a lot of shame for not getting better, seeing people around me getting deeper into dept to pay for my treatments that didn't work or that I couldn't tolerate and for not being able to work and help them financially. What helped me the most was working on my self love, self esteem, self worth, gratitude for what I have and acceptance of what is and what might be. I'm still struggling with the acceptance part some days but, as I believe we came here to grow and evolve, a lot of time through hardships, this is what I try to do. I try to focus on what I can do and not on what I can't do and see every little things I'm still able to do as small victories. I also try to take each day as they come and enjoy the little pleasures in life that I still can enjoy without too much expectations for the future as I might not have one or a nice one anyway. This is not an easy journey we are in but one full of growing lessons nonetheless. 💜
Your whole last paragraph was really beautiful and I think is a very very healthy way to deal with your hardships. I also try to focus on what I’m grateful for and that makes me feel less scared. I hope you can make some progress soon as it’s probably on the top of your wishlist! ❤️
So sorry to hear about your pain Cyril! That sounds excruciating 😢
Rest in peace 💔, I am heartbroken she did not beat the infection, I can understand her though, Clarithromycin is a nasty drug. I had taken it to treat h pylori infection. Problem is that I had the worst feelings ever on that drug. My pulse would rise an fall chaotically, I had terrible insomnia and stomach pain and metallic breath, like vapors in my lungs it was hard to breath. Post treatment I had the worst 6 months of Candida in the gut ever, even if I had taken probiotics with it. It was just not worth it, and guess what.... I didn't get rid of H pillory. I suffered unnecessarily, and I also added SFIO/SIBO to my list. I will go back to bee venom therapy as soon as I resolve my GUT I can`t tolerate too much histamine. But that day I sewered I will never take an antibiotic ever again BUT Only IF my life is in immediate danger!
hi jake, we are in different situations but i can semi relate to you with how you feel about having to stop the antibiotics - i felt the same with DSF when i had to give it up due to side effects and watch the people around me improve / get better with it. While im happy for them, inside i felt very jealous and then that brought me to feel alot of shame. your feelings are very valid which im sure you know, the situation it's devastating and defeating and then the cycle of thought happens 'will i ever get better' etc etc. i cant imagine how frustrating this setback would be for you, and you're probably sick of the endless setbacks. with a bit of time i hope you can get back onto the antibiotics and move forward with the protocol. you are in my thoughts xx tash
Hi Tash!! I know that stopping DSF was devastating for you because you felt good on it, albeit for a very brief time. I know I have to keep building up my nutrients and I, in hindsight, shouldn't have started treatment. The nutrient deficiencies were not given appropriate consideration and I think that's because I seem better than I am. I do have some new practitioners and pathways to go down coming up and I need to get caught up to speed on the finer points of what your dad is pioneering but it sounds very, very interesting and promising. I hope you feel better soon!! ❤️
@@BartonellaBabe super glad to hear you have some new pathways / alternatives which can hopefully help build up the nutrients and get you back onto the protocol asap. it's definitely so difficult not being taken as seriously or listened to bc we seem better than we are, it's almost like we need to stick a sign on our foreheads or something. also agree about things being blamed on herxing, it's definitely frustrating. yes indeed it is interesting what dad is looking at. thanks jake - you too
5:23 great moment :)
Amazing… thank's a lot!
Sending you a big hug
Hug received!!! Thank you! ❤️
I cant afford to treat, and like you I am too sick to treat even if I could afford it. I have 4 types of bartonella. I got bartonella at age 10 and now I'm 43. I'm exhausted, frustrated, and at the end of my rope. I had to take 3 weeks off of work recently because I couldn't function. I don't even know how I continue to work when I can barely move. Thank God I work in mental health, so my boss actually tries to understand what I am going through. I treated SIBO and it has been somewhat better, but my gastro doctor at Stanford left. I had severe constipation to the point where I would be comatosed from the toxins. I totally understand how you feel. Why cant we just get better?! 😭
I’m so sorry to hear all of that! It’s truly terrible and makes you want to scream that “it isn’t fair!!!” I’m glad to hear at least your boss somewhat understands and I hope you can get to treating soon ❤️
Others won’t get it until they get it.
I’m pretty sure that I just had a Bartonella attack. My ND declined to have me tested and I know other doctors would blow it off, so I diagnosed and treated it myself. Azithromycin and an anti inflammatory got me through it. I also had some leftover medication for surgical pain that came in handy when things got bad.
My frustration is that the medical practitioners simply won’t treat me. I’ll be okay if I can get testing but that is sometimes not easy to do.
Another frustration is that I’m steadily getting worse and if I push against that by getting lots of exercise, it just sets me back.
Jake needs a break, a vacation, a getaway. A weekend at the coast, walking on the beach. A week camping, looking at all the wild mushrooms. Or just a spa day; mani, pedi, haircut, facial.
I could go for any of those things except I can't walk so no walking on the beach. You are so right. They won't get it until they get it and even some people who are sick don't get it! So sorry to hear of your frustrations and it makes sense that exercising puts you back. I hope you find a good practitioner or whatever will stop your decline right now. Thanks for watching Paul ❤️
@@BartonellaBabe It’s hard to see your sorrow, you’ve been so brave for us. I’m hoping you feel much better soon.
Maybe this mRNA technique has some promise of relief.
2 questions for you that I discovered were a really large part of my healing journey (lyme, bart, MCAS, etc).
Did you get the Hpv vax?
Do you live in a wet or humid climate?
I won't expand upon the first issue, but regarding climate, I notice I feel significantly better when I travel away from Seattle to a drier climate. I notice a difference almost immediately.
Detox is so important as it minimizes herx reactions . I'm sugfer from panic attacks, depression, severe neuro phsyc symptoms and depersonalization to where I get more brain fogged while on treatment. Detoxing is extremely important.how long have u been on antibiotics or treatments what do you take, and do u detox? One big issue for me that was making me more brain fogged and depersonalization was yeast over growth and sibo from being on antibiotics on and off so much , parasites . This needs to be taken care of first before ANY lyme and bartonella treatment . I just paid to see my 1st LLMD and they refused to start me on any antibiotics because they made me set up and appt. With phsyc therapist for therapy and meds incase incase I have more neuro physc symptoms induced by brain toxins. I havnt been able to work for 2 months due to anxiety and panic attacks and disorientation and brain fog. I herxed so bad on clindamycin which is used to to treat babesia so now its possible I can have babesia too. My son gets SSI and we have housing and rent subsidized bt it's hard mentally I have 3 kids and single mom with no fam or friends to help really.
I’m so sorry to hear you’re a single mom without family to help. As if these illnesses aren’t hard enough! I have to work on my nutrient deficiencies before I can treat. I’ve been at this three years so too long of a history to type but it’s all on my channel! SIBO is in remission and I’m working on SIFO and adding foods and nutrients back in. Then I will restart treatment ❤️
@@BartonellaBabe I need help with my sibo 1st as well! I went down to 104 pounds and I'm 5'6. So are u taking care of sibo 1st meaning you havnt started bartonella treatment on antibiotics yet?! My worst symptoms is neuropathy in my brain. My brain will feel like it's on fire along with migraines, idk what else to do, have u experienced the burning sensations? The depression and panic gets bad too
Yeah, let's have a good cry. When I watch your videos (when you're not crying), all I see is a very intelligent smart and strong woman. You're obviously both of these. It's good to cry now and again to let it all out. A piece of advice I can offer you is, which you probably already know and do, is to lower your expectations and build yourself back up from there. Rinse and repeat. It's not easy but it's the only way forward. A lot of people said to detox poisons and viruses and whatnot out of them have heard of Dr Robert Morse - I have my own personal experience with him and his protocol if you ever want to talk about it privately with me. You already have my email to which I mentioned him to you. I do like seeing this vulnerable side to you as well because it is relatable and that helps to know there are other people out there going through the same or similar situations as crappy as they are. I tried to comment a lot sooner but oh no the powers of technology liked to f**k with me once again. Anyways, good luck. x
Damn girl u should have been a Dr.❤
Hugs and forehead kisses StillJake. Sorry you're going 1 step forward, and feel like sometimes 90 steps back. All your viewers wish we could fix it, and you, and can relate. And yes, I feel shame and guilt for being sick. Its been a burden on my family, on society, its demeaning, emasculating, degrading, having to ask, beg, plead and cajole others for help, from doctors for tests and meds, for some people disability, SNAP, Section 8 housing, and whatever else. For whatever its worth, your efforts with your Podcasts help many people in a myriad of ways. I know nothing about Bartonella as I found your channel looking for MCAS information, which you have a plethora of. And as of right now, while typing this, thanks to you, I know *so* much about buttholes, the details have overwhelmed my small brain and seeped up to the top of my cranium so, I am now, a full-blown asshat. :)
Thank you TR Savage. You're not a burden on society. No sick person is. Easier to say to someone else than to feel. I really really feel for you with all that you have had to endure with disability and housing and meds and care. It shouldn't be as hard as it is and that disgusts me. And I will be a butthead to your asshat lol
I know exactly how you feel. I don’t think I have bartonella, I have CFS but the struggle is the same
yes all of these illnesses that are not well understood and can be debilitating are so awful and I feel for all of us
Can you try methylene blue ?
(Be careful of serotonin syndrome).
I miss you Jake.
I just discovered you, so I don’t know all your history and background. Just wanted to make sure you know MOLD, MCAS, and gut dysfunction go hand in hand. Lots of people think bartonella is the cause of everything, when mold toxicity is the bigger problem. If you haven’t done a mycotoxin (body) and ERMI test (house), then you’ll definitely want to do that. A lot of LLMD’s still don’t address mold or understand how it affects those with Lyme/co(sigh). There are doctors who do, though.
Haha my experience has been more practitioners know about mold than Bartonella and lots of people think mold is everything. I think it really just depends on which practitioner you see. All things should be considered and evaluated and I have thoroughly gone through the mold process and it's not my issue, thankfully
Have you tried a rife machine? Perhaps a spooky2. It works
I thought Clarithromycin came in 250mg and 500mg tablets. Or were you talking about another medicine?
It is hard not to be frustrated when these idiot doctors don't take this seriously and the idiot insurance company's don't pay fir help. Yes I'm frustrated!!!!!!!!!
Hi Jake- I was wondering if your doctor had ever discussed changing your oral antibiotics to IV form? Curious if this change could help bypass the GI tract and help you to continue to treat the Bartonella while avoiding excessive unwanted GI symptoms. I understand this route could still create problems for some, so this is just a thought and curious if you ever have explored this route. Also curious if you have ever tried IV glutathione infusions?
Hi Jaci! I have tried IV antibiotics. Unfortunately, for some people, like me, IV antibiotics don't take the burden off the GI tract. I can still react in my GI tract to something that goes in my vein. I have done a fair amount of IV glutathione infusions and was overdoing it but now I am doing a low dose of acetyl-glutathione a couple of times a week and that is the sweet spot for me
Sending love ❤️
❤️ thank you Chloe!!
You poor sweet girl. This is not fair. You are young. I'm old as F...and it's hard for me, I can't imagine. You should be out living your life. I do the same, I feel I figured it out and boom, what I figured out, slapped me in the face the next day. But you are so smart and determined. I feel if anyone has got this it's, you. Sucks not being in control. Hang in there. Unfortunately, these diseases can change and morph, fluctuate and waves. So hard to go with the tides. I also hide how sick I am. When people say, you don't look sick....I say.,..YOU DON'T LOOK STUPID...interesting. Also, may I ask what your typtase numbers were?
Bahahaha I made a short video about that exact same retort on Instagram. You don’t look stupid and insensitive! It’s so hard. I am at least grateful this happened well after college. That would have been really hard to miss out on. And I don’t remember my tryptase off the top of my head but I know it was always well within normal range but I never took it during a flare
@@BartonellaBabe Haha...it's the best line...you don't look sick, well, you don't look stupid. I ask about your tryptase because they are finding even though one is within normal range, they can have something called Hereditary Alpha Tryptasemia. It is done by genebygene....and they are finding that 5% of the population carries this mutation but an infection or traumatic event can trigger the gene to turn on. Most patients have a tryptase over 7 or 8, but one did have 6.5. But it is in the realm of mast cell disorders and the cause and trigger for many. :) But 7 or 8 tryptase is in the normal reference range. I hope you are feeling well today!
@@tkimber4699 I haven't been tested for HAT but I really don't think I have it. I do have an MCAS literate allergist/immunologist and she has never brought up testing for this for me. I really think bartonellosis and SIBO/SIFO are the main drivers here but I can ask my doc about it tomorrow!
@@BartonellaBabe I have SIFO as well and have to take fluconazole in small doses occasionally. It's the worst! So sorry. Bartonella affects my brother's brain and emotions more than anything-it's so hard to witness. I'm so sorry for you. I also had encephalitis for about 6 or 7 years, but once I got the mast cell treatment, it slowly helped. Yes, ask the doctor for at HATS test if your tryptase is above 6.5. You don't have to be in a reaction. Love your videos! You got this.
Have you considered mega dosing with thiamine Tetrahydrofurfuryl Disulfide?
I haven't because I am extremely sulfur intolerant and I also am now reacting to my B vitamins and other meds I previously tolerated but I'm currently on a new path and feeling somewhat optimistic
What about mega dosing with C? Best done 3 ways oral + IV + intramuscular +. A fat soluble version
@@BartonellaBabe look up Dr Levy’s a guide to the optimal administration of vitamin C. Dr Levy was a cardiologist for many years until a dentist friend revealed the power of nutrition. It can act like an antibiotic, antiviral plus a bunch of other great stuff. He’s helped people with MS, chronic fatigue syndrome, Parkinson’s. If your interested I can share the pdf booklet? If you don’t I get it to🙂
Unfortunately, I wouldn’t be able to tolerate any of that at the moment because my MCAS is too severe 🙂 but if you want to send the PDF my email is jakethebartonellababe@gmail.com
More people need to investigate that.
Vitamin C is very beneficial
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anyone consider psychotherapy? I mean it is basically a trauma to experience a chronic illness
It definitely can be very traumatic! My mom is a therapist so I personally don't feel like it would be beneficial to me (not that she is MY therapist but I am familiar with therapy and have gone before). Anyway, I definitely think it could be so helpful for many many people and I know many patients that do have therapists. There are a few out there that are familiar with these types of diseases so that's what I would look for
What medication or supplements were you taking for treatment?
I was on a low dose of clarithromycin and titrating up. Trying to get back to that ASAP
You sound like my brother did before he died. He had lyme and bartonella and fought it for 16 years. He tried everything but we didn't take him searously. We watched him decline slowly and we accused him of being a drug addick.. Finally he died of a hart failure just when he thought he was getting better.. He kept saying I'm smart enough and will figure it out. His valve was damaged and formed a blood clot that went to his brain. We are sad because he was telling the truth the whole time about his weird infection.
So sorry to hear of your brother. That must be really devastating for you and your family
Yes it is.. The majority of the healthy world who haven't experienced a real chronic infection have no clue what it's like. Infact most of us look like , those people are just trying a new angle to get attention because the normal ways don't work. I knew my brother like the back of my hand and I knew what he was saying was real but I didn't have any experience dealing with this type of infection. I did everything I could to help but it's the type of thing that's personal and only he and his doctors could figure out togther. Unfortunately his doctors where faced with exzorbanant testing that cost 1700 dollard or more that he didn't have and to prove he wasn't lying that insurance would not pay.. He even told me he gave up and turned to natral protocols and fish antiobotics to get better.. They only helped for short term then he got worse.. And when he told doctors he was on fish antiobotics they just ridiculed him and called him a self medicaror and crazy... I miss my brother. He was so bright and smart but was caught up in a stupid uneducated system that only cares about the bottom line not ypur health.
You are right. Docs suck
FYI respect to Jake but if you didn’t realize this treatment plan does not work. Please don’t follow it.
You’re a brave person!!! No body’s health is perfect , everyone has issues. There’s nothing wrong wanting to be as healthy as can be. Study biochemistry, microbiology, virology, parasitology, herbalism and the benefits of NAC supplements, selenomethionine,, and put your faith in Jesus Christ and allow the Lord’s Spirit guide you to do what’s right. Accept Christ and get Baptized
I have one question to you: are you vaccinated against covid 19?
I have received both doses of Moderna and am happy I did so 🙂
@@BartonellaBabe when? What were the side effects?
Several months ago. With the first dose, I had some increased nerve pain the day of but that’s one of my normal symptoms and I got a rash at the injection site a week after the first dose aka “Covid arm.” The second dose I had a fever of 102.5 the night of but it didn’t feel that high. I couldn’t take anything for it because I don’t tolerate any fever reducers that I know of so I just took some extra mast cell meds and went to bed several hours after my normal bedtime and I woke up pretty much back to normal the next day
I understand, so sorry but I find Genes are huge deal! Finally… have you worked with someone like Bob Miller from Tree of Life Health?
Funny you mention him! My results just came in and I will be seeing him in September ❤️
I have the solution
what is it?
Girl I know the feeling