✩ 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 in the following ways: → PayPal: username @bartonellababe or search Jake Picker → Venmo: username 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! → SHOP MY MERCH HERE: bartonella-babe.creator-spring.com → SHOP MY JEWELRY HERE: www.etsy.com/shop/bartonellababe ✩ Thank you for supporting my hard work and my channel! ✩ 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 Let's connect! ✩Instagram: @bartonella_babe ✩Facebook: facebook.com/bartonellababe ✩Inquiries: jakethebartonellababe@gmail.com
We’ve all missed you so much! You are so incredibly valuable to all of us who are suffering with this insidious disease. I can’t tell you how much I have learned from watching your videos. Since having Bartonella my mind doesn’t work as well as it used to so it’s difficult for me to articulate the right words. I admire how you are so in tune with your body. I’m 51 years old and I struggle to figure out all the shit that’s wrong with me. It’s like I still don’t know my own body. It’s hard to understand what’s causing what. You are an incredible detective, always figuring out what’s going on and putting the pieces of the puzzle together, I admire that. I’m also incredibly jealous. I can’t figure out shit about what’s going on with me. You always give me the push that I need to start doing better about my health. I can’t tell you how many times I just wanted to give up. Having end of life conversations with my husband almost on a daily basis. It’s been really rough. My kids keep me going, they are my world. I’ve been through some severe Bartonella symptoms (burning pain all over for 3 years straight) and somehow I’m still kickin! Please don’t stop doing what you’re doing you’re so important to all of us. We love you Jake! 🥰
Too old to die!!! I love your spirit and because of your channel my daughter was diagnosed with SIBO. Thanks for all that you do it does make a difference!!
My mom was hospitalized twice these last months with hyponatremia. Learned a ton about that lately. My mom is up to 139 sodium now. Now we are on to the next mysteries. Since end of 2016 I have not been able to make any progress treating bart. Been putting out fires and managing harms from self-treatments. Can totally sympathize.
StillJake...thanks for the post. I was actually concerned a few times, due to no updates, that you'd either abandoned the mission, or something worse happened. You look glamorous, resplendent, stunning, and well. Consider buying a snorkel for future based water diets. Maybe write a book too, on how "multiple brain fog" sessions...can save a marriage. The Marvelous Maternal unit sounds well, Cujo's looking good, sorry the last few months have sucked and been so hard. I, and I'm sure others, have the same feelings sometimes. Just...a feeling of "resignation" that the ongoing struggle is too hard, with a bleak future and no progress, but yet, we still carry on....and please do. There is always hope that new meds will be designed, especially as so many Covid "long haulers" are having "cytokine storms" and Dr. Afrin et al think that is directly connected to Mast Cells, so perhaps the "Pocket Protector Pundits" will come up with something to help them...and us. :)
TR Savage!!! Your comment brought the maternal unit and me much joy. It would bring Cujo joy too but she doesn't speak human. Yes COVID has been and continues to be devastating and the long hauler community must be as devastated as we are. I hate to think of "silver linings" to something that has killed so many people but long hauler research is going to be so helpful for other poorly understood inflammatory illnesses. I plan on making a video on this but I thought I would tell you I am trying Gammacore for my GI motility. It's an FDA approved device for cluster headaches that I am using off label
Glad to see you keep fighting! I really resonated with your comment of people asking about your progress. That happens with me too and adds insult to injury when I’m fighting with everything I have to get better and of course am disappointed with lack of progress too. I know I’m trying my absolute best to get well but it still hurts my feelings when people talk like that. Wishing you the best and encouraged to see you continue to fight! Thank you for all the information and advice you put out!
Thank you so much!!! It's so hard when we aren't making progress and then it feels like we have to justify that to people (at least sometimes). You continue the good fight too!
You’re amazing Jake! I’m so grateful and impressed by everything you do with your channel 💛 I’ve actually had similar experience with the water/salt situation which also took me lots of self-investigation to crack🤪 Keep fighting, you’re such an inspiration and we’re all way to solution-oriented to die right ☀️
I think the water/salt situation probably happens more often than doctors think. My mom is a therapist and one of her patients had such strange neurological issues and she kept getting bounced from psychiatrist to neurologist and back again and it turned out it was hyponatremia. Thank you for your sweet comment!!
I'm surprised that you didn't win. With enough investigation you crack even the most difficult problems... and you were definitely doing a lot of investigation. :-(
I missed you! I'm glad you were able to figure out what the source of your most current symptoms was from! BTW, I would say that I am too kind to die. Life has been a nightmare this past year after developing SIBO from prescribed double-dose PPIs for LPR reflux, which was most likely histamine related because those symptoms are also a billion times worse. I also developed a hiatal hernia from the upward pressure that I get from SIBO, that I didn't have before all this. I often think, if I just didn't take those PPIs, I would be in a completely different place right now and then I get sad. I do love watching your videos and your interactions with your mom and Piper are priceless!
so happy to see your face back on my sub page! I had been purposely avoiding consuming content about The Illness™ because medical PTSD is a bitch in the time right before you took your break so I'm very glad we're both back 🥰 I'm too spiteful to die hahaha
also the word breakdown section had big chubbyemu energy "hypo meaning low, Na meaning sodium, and emia meaning presence in blood: low sodium presence in blood" hahaha
I’ve been stuggling with some allergies and noticed thst water was helping. I also ended up drinking too much water and noticed that licking salt was relieving some symptoms. Something that helps me with gas at times is an Indian digestive spice called Ajwain. I know how tough it is to try to figure things out on your own, but remember your knowledge is compounded and it will get easier and easier.
While I'm a newer subscriber to your channel, I noticed the gap, too! Thanks for the update. For the fill-in-the-blank request, "I'm too ____________ to die . . ." My word is 'Essential.' I know that sounds a bit self centered, but even moreso, YOU, Jake, are essential to so many of us who have found your YT channel and FB group. By allowing us to see your successes, struggles and even opportunities at 'failing forward,' you've encouraged those of us in a similar/same situation. I chose the word 'essential' because as a mother (now unemployed thanks to Lyme/Bart), I have an adult child fighting an insidious disease called Crohn's colitis. They just had part of their colon removed one week ago. Thankfully, as a nurse I know how to do dressing changes, because the homecare nurse only comes out to their apartment 2 days a week, and my kiddo has been so sick since December 1st, they can hardly function right now to do much of anything let alone dressing changes. Having Lyme/Bart is keeping me out of work, but also it's allowing me to be there for my kid, something that's so much more important right now. Also, helping my child distracts me from my own issues as I focus on them. I've been so grateful for this channel and all that I've learned about you, your story, Bartonella and the challenges this disease can bring and consider the work you (and your mom - Kudos, Mom!) put into this vitally essential as well. You both are true GEMS!
Haha thanks for noticing my absence! Essential is not self centered! Of course you are essential as a mom (and probably many other things too). I love the term "failing forward." I've never heard of it but it's perfect. I am so so sorry to hear about you and your kid. When it rains it pours. HANG IN THERE!❤️❤️
I’m so sorry to hear about your experience with hyponatremia. I was hospitalized with hyponatremia because I was misdiagnosed with and treated for diabetes insipidus. The medication caused water toxicity. It was scary as hell! Don’t give up. You’re too important for the chronic illness community to die. ❤️
I remember watching some of her first videos three years ago. I’m completely devastated by this news. I listened to a few videos tonight and I’m wondering, does anyone know - with all of these gastrointestinal issues, inability to walk or stand, and the leg pain, did she ever have a work-up for structural issues such as Tethered Cord?
'too sleepy to die' LOL LOL LOL.... loved loved loved this video. again you are here humanizing us! You are in good company, so so many people understand how you felt! Me at the VERY top of the list... these vector borne illnesses are suckish man. For me I can't take the pressure in my ears, always needed to yawn but can NEVER complete it, the dizziness, the brain fog, the kill me now foot pain lol.... my urine used to be nearly sizzling hot, now it feels too cool, whats causing that dear God another symptom??! When I first was my illest, not a word, but I know you follow, I peed on myself while sleeping every night almost, two steps from a bathroom btw, then sets in: I could not pee at all, also the "nothings moving feeling, or just moving deathly slow, lymphatic stagnant feeling... MCAS like symptoms.. organs inflamed... oh woe it's me lol.. :( Since October 2017 was the first time in my life I experience "vertigo" and the rest is history, bad bad history. I have come a extraordinarily long ways, but not far enough Jake!!! Continue to stand your ground.... You know your OWN body! Know we care and understand you LITERALLY! Guess like you, i feel too glamours to die girl!!!!!!!! I gotta slap this makeup on and deep condition this strands baby!
So happy to see you back and better! You are too inspirational to d1e! Thank you for continuing to fight and share your knowledge and experiences. I am the opposite - don’t drink enough water and I need to work on that. But it’s good to know the signs of hyponatremia in case I can help someone else!
I am struggling with horrible heartburn. It will last about 6 hours and it is so painful. I went to ER they said to take Pepcid. I did and it still does not help.
Hello Jake, did you ever doing mycotoxin test? So many of your health problems are often triggered in people who have mycotoxins in the system. for example: many people have Lyme infection, but are not ill from that. once they get mycotoxins in the system, those mycotoxins weaken the immune system so much, that Lyme disease comes out. They might do several years of antibiotics against Lyme disease with no real success. When they discover that they have mycotoxins in the system, and they detox those mycotoxins, often times the Lyme disease years without any further antibiotics. I imagine the same might be true for Bartonella. if you have mold illness because of mycotoxins, your antidiuretic hormone goes down to zero, which makes you pee out all water, and drink huge amounts of water, also with the risk of hyponatremia... mycotoxin illness very very often times causes Sibo and SIFO and other fungal colonies in the body. Mycotoxin illness also causes Marcons infection, which is well brings the immune system down and it is impossible to hear from all the other secondary infections that turn into diseases. The reason for my Sibo and chronic health problems was mycotoxin illness, and once I started to treat that I got better. 24% of the population cannot detox mycotoxins naturally, so a two-week stay in a bad total room in childhood can be sufficient to get intoxicated enough to have all those health problems. that's why I wonder if you ever did mycotoxin test? If you didn't do it, I would strongly recommend it or at least that you get good information about it and then make a good decision if you do want or you don't want to Do the test
Glad to see you still fighting. I just told my husband I had not saw any videos and I was worried. I know how you feel. It’s been a living hell but I have to do this, I don’t want to break my families heart. I had to laugh because my son saw me watching one of your past videos and ask me if you lived around here and do you have a boyfriend. I said no she not in VA and as the boyfriend... I think her main focus right now is like me, getting well. Your in my prayers.
Oh wow thank you so much for worrying about me. I was worried about myself too 🥴 I’m sorry it’s been a living hell for you and I completely empathize. And lol! You are right. Dating is one of the things farthest from my mind. Eating more foods comes first lol
Oooh, I don't have bartonella but I can relate to the subject on salt, as this is something I've been recently thinking about! I've had some bad night sweats even when it wasn't warm. I remember eating lots of salt and wonder if that's why. I also think about salt and Iodine and potassium in relation to my skin issues, which can also be in relation to the thyroid gland and hormones. I think I initially stumbled on your channel through learning about SIBO (Yes I got tested and don't have it, false negative perhaps - wishful thinking, I kind of wish I had SIBO so then I could potentially blame my acne on it then cure it. Guess again). When a person has been suffering for so long they can sound like a broken record - I must have broken so many records by now lol But yeah... the suffering is real whether that be sh*tty bartonella or sh*tty acne, it all stinks the same lol Something I noticed about you in all your videos is how oversharing you are, not just with your mom (mum) but the general public, and crudely so. You are attractive, clever, funny, and have Bartonella - You have a lot going on with you lol Does bartonella deserve a captial B? I don't think so. Um, the 2 thingies you mentioned - You have 2 choices, carry on or not, might as well carry on (sounds lame I know). I refer to death as being comparable to sleeping, as in, you don't know you exist. Yeah it's cynical to not believe in the afterlife but it kind of goes hand-in-hand with the above. And the other can be... Well, because everyone suffers to some extent or another, so you are never alone, so let's stay in this sh*t together. I think I once said to you you'll always be lowering your expectations and it brings you back down to rock bottom again. You'll forget how many times you've picked yourself back up again, but always onwards and upwards. No, not heaven lol Just keep trying and never ever give up. Ok so I've babbled and probably cheated but fu*k it. See you in the next video!
I am having the same issue with hydration issues-all my tissues. I think it’s related to Aquaporins. Possible Diabetes Insipidus or assault on the water channels (I have positive NMO/ Aquaporin 4 antibodies, yet no lesions on my brain…) I was Bart positive too but having some severe MCAS problems too.
I really hope that things will get easier for you very soon! 🌷 And... I am too ___musical___ to die 😛 This will become my motto from now on. Love that you keep your sense of humour even in difficult times. That's inspirational! My very best wishes 🌺🌺🌺🌺🌺
So happy to see a new video! I have given myself hypernutremia before. I felt drunk!! I was so confused for a couple of days even after I ate salt and reduced my water intake. I also have trouble starting my stream to pee. I think mine is related to having pelvic floor issues which also causes me constipation and other more difficult issues. In order to pee I have to put pressure on some other part of my body so my pelvic floor will relax and/or be otherwise distracted. It’s interesting you have to focus to pee because it’s the opposite for me! I’m sorry you are still struggling with your SIFO. I have been trying to treat my SIBO for a bit now and it feels impossible. I tried Xifaxan with no success or improvement and now I’m on the Low FODMAP diet. Anyway, I love your videos and I’m glad you’re hanging in there. I’m too stubborn to die, I suppose.
bhahaha being too stubborn to die is great! Maybe it's even adaptive lol. I think it's actually pretty easy for us with chronic illness to accidentally give ourselves hyponatremia given that we are encouraged to drink water and the association of salt with high blood pressure but obviously we have to keep all that in balance. Very difficult!!!
aww Wishing you well. I have been in dark places like that. Hold on. I am far from 100% but keep fighting. My latest is trying the Pridgen protocol for fibromyalgia. have you explored this? it's in clinical trials now. he has helped people with a lot of GI issues. I see him directly and he takes insurance. I am praying this is my remaining piece after treating bartonella since that, while it did help, alone was not enough for me
Glad to see you back. I'm too smart and good-looking to die. At least one of those is true. We really have similar path in terms of gut issues. Thanks to you I figured out I have hydrogen sulfide SIBO (and before that probably methane as well). I treated that more or less successfully, but I still had severe constipation. I have treated SIFO with nystatin and the constipation temporarily resolved, but I got hydrogen sulfide SIBO again with methane (literally blew like a balloon after the nystatin treatment within a few days). It's honestly so frustrating sometimes. I recently made some progress going zero carb (honestly hate it, especially the community that is associated with it) and treating hydrogen sulfide and methane again, and I really hope that could be it. I also tried prucalopride in between, but I got all sorts of weird symptoms over time, which I can only describe as low-grade serotonin syndrome.
hahahahah "at least one of those is true" and yes I agree with you about the zero carb community. A lot of health communities are very strange and/or extreme but the fact that you've made some progress is huge! I didn't do great with prucalopride multiple times either. Headaches from the serotonin effects but they did go away after a week. I'm willing to try again, if needed, once I'm more stable
Jaaakeee I'm so so happy for you!! Please take a look into Dr. James DiNicolantionios books "The Salt Fix" and "The Mineral Fix". Those are a level up for me
The Electrolytes is honestly where you start... They can make you feel better in an instant, like you experienced. Since you have time, maybe you'd also be interested in the work of Dr. Ray Peat and Morley Robbins... You are a hell of a detective! We are all in this together...
Oh, and a great salt is icelandic sea salt, if you tolerate this. It has a whopping 40mg of Magnesium in 10 grams of salt. Brands that sell this are Crucial Four and Salt Verk. I'm getting the one from SV as I'm located in Europe. You can do this Jake! Please take a look into electrolytes and then all minerals. They are the body's spark plugs
Yes you were correct about the etymology of hyponatremia. You are too determined and knowledgeable (and glamourous and funny) to die. Thank you for all your videos. I always learn something. Please, if you learn more about the salt/water connection please tell us. I'm curious. I know a little but you always add lots of interesting facts and details.
well I think the most helpful thing I have learned about why it's so hard for me to regulate salt and water is that one doc told me that people who are on low protein diets (which I am and have been for almost two years because of the food sensitivities) have a harder time regulating the salt and water balance so I hope that this will get better when I am able to add more protein into my diet
Sater and walt sounds like some country folk band. I'm sure you have thought of this / sorry if this is a silly Q but have you ever noticed a difference with sodium chloride IV infusions prior / or is this something that could help ? nice to see you back!
Ooh I agree about the country folk band 😂 and actually when I was getting IV saline when I had the sater and walt imbalance, it started to make me tired and brain fogged because I needed even more salt than that. I just had a really interesting and illuminating discussion with Dr. M on this topic. Fair warning I’m going to simplify it because it don’t totally understand it yet but basically when you drink too much water, it’s almost like you recalibrate the kidneys to expel all that excess water so getting back to normal is a transition. I was able to transition down to a gallon a day but I still need to monitor my salt intake all throughout the day to make sure I don’t get brain fog but he said that a diet low in protein (which mine is) makes it harder for the kidneys to hold onto salt as well. So today I’m going to up the lentils a teensy bit as a stepping stone to getting more balanced
@@BartonellaBabe ah yep gotcha fair fair, i hope upping the lentils goes well for you, it's great you have figured out what is causing that issue - so you can come up with/put that plan into action to help decrease that brain fog and tiredness! and then the more videos you can make hehehehehe
Hi jake! Glad to hear an update from you I’ve been wondering how you’ve been doing. In terms of salt intake, I take a product called salt stick vitassium which are buffered electrolyte salts (I take it for POTS). The ingredients are: sodium chloride, potassium citrate, hypromellose (vegetable capsule), vegetarian stearic acid if those ingredients work for you. I drink a ton of water a day and have to balance it out with salt, much easier taking the pills than eating it through food. Also my motto is “too hot to die”, I’ve been listening to too much Megan thee stallion what can I say something for thee hotties slaps
BAHAHA I love the "too hot to die!!" 😂😂 Yes you are girl!!! No such thing as listening to too many hottie slaps. I have heard of vittasium! I can't do the veggie cap or stearic acid so the Redmond's salt (which has minerals and shiiiiit) has been working well for me. I also don't need as much as a pots person so just eating salt works. Also, I find that when the salt is absorbed through my oral mucosa, I get relief a lot more quickly and potently than if I were to swallow it. I'm actually planning on doing a dysautonomia and Bartonella video as soon as health circumstances allow!
@@BartonellaBabe oh interesting I’m glad that eating salt straight up has been helpful! Redmonds is good stuff. For research I want to say there might be content on the dysautonomia international TH-cam (lots of webinars there) and their website. Hope you can rest and take care in the meantime! Got to put yourself first :)
@@ashleywinter6217 thank you!!!! The Dysautonomia International website is FANTASTIC but I didn't know they had TH-cam webinars so thanks for the hot tip. I will def be checking those out
I'm just too stubborn to die. Jake, of course you were missed, I was low-key worried, but I knew you must just be figuring something out. Something I love and will borrow is how you paused to include your mom in describing your self-diagnostic process. My husband is that person for me. Illness is not something that just affects one person. It's changed our family. But in that is something really sweet--that I have a collaborator and a witness as I act as my own detective. And your mom's presence on the other side of the camera is so sweet, too. Coincidentally, last weekend I had a very serious flare that involved a couple of days of vomiting, diarrhea, and not eating or drinking, and while MCAS and SIBO have from the beginning presented heavily in the neuropsychiatric column for me, this was the first time in my life I have experieneced hallucination. I thought I was dead and that the reality I was experiencing was Hell (NOT THAT FAR FROM THE TRUTH, AM I RIGHT???). My mom came over to talk to my husband about whether anybody would help me at the ER or whether that would just hurt me more and she told me to drink electrolytes and have a peice of matzah and I came back online in two minutes and was at least lucid again. So yeah--basics.
I’m too cool and determined to die! Besides my path is divinely led by God! I add pink Himalayan salt to my 🍋💦, perhaps I will switch to iodized salt..
try animal-based grass-fed (carnivoreMD) diet for gut? my gut is like heaven on it (despite tons of abx over years for lyme in the past). plants can hurt gut a lot. i have very little bloating eating this way. be suspicious of plants.
✩ 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 in the following ways:
→ PayPal: username @bartonellababe or search Jake Picker
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✩ 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!
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I'm heartbroken. I hope you have found a place with peace and tranquility.
So am I. I thought she would be one of the ones to make it through. I'm absolutely devastated.
RIP Jake ❤ you are a true angel now!🫶😢
So sorry to hear of your passing. You were a shining light in the healing world. ❤😢
We’ve all missed you so much! You are so incredibly valuable to all of us who are suffering with this insidious disease. I can’t tell you how much I have learned from watching your videos. Since having Bartonella my mind doesn’t work as well as it used to so it’s difficult for me to articulate the right words. I admire how you are so in tune with your body. I’m 51 years old and I struggle to figure out all the shit that’s wrong with me. It’s like I still don’t know my own body. It’s hard to understand what’s causing what. You are an incredible detective, always figuring out what’s going on and putting the pieces of the puzzle together, I admire that. I’m also incredibly jealous. I can’t figure out shit about what’s going on with me. You always give me the push that I need to start doing better about my health. I can’t tell you how many times I just wanted to give up. Having end of life conversations with my husband almost on a daily basis. It’s been really rough. My kids keep me going, they are my world. I’ve been through some severe Bartonella symptoms (burning pain all over for 3 years straight) and somehow I’m still kickin! Please don’t stop doing what you’re doing you’re so important to all of us. We love you Jake! 🥰
Jake, you are a genuine light, and I'm so sad. Your videos and spirit have helped me so much. Rest in Paradise love.
RIP Babe 🖤🕯 💔 Thanks for everything. We all gonna miss you 😢
Too old to die!!! I love your spirit and because of your channel my daughter was diagnosed with SIBO. Thanks for all that you do it does make a difference!!
Glad you’re back! You help so many people feel less alone. Thank you for all you do 💗
My mom was hospitalized twice these last months with hyponatremia. Learned a ton about that lately. My mom is up to 139 sodium now. Now we are on to the next mysteries.
Since end of 2016 I have not been able to make any progress treating bart. Been putting out fires and managing harms from self-treatments. Can totally sympathize.
Hyponatremia is actually so much more common than I think people realize!!! And yes it feels like an endless game of whack-a-mole sometimes 😑
StillJake...thanks for the post. I was actually concerned a few times, due to no updates, that you'd either abandoned the mission, or something worse happened. You look glamorous, resplendent, stunning, and well. Consider buying a snorkel for future based water diets. Maybe write a book too, on how "multiple brain fog" sessions...can save a marriage. The Marvelous Maternal unit sounds well, Cujo's looking good, sorry the last few months have sucked and been so hard. I, and I'm sure others, have the same feelings sometimes. Just...a feeling of "resignation" that the ongoing struggle is too hard, with a bleak future and no progress, but yet, we still carry on....and please do. There is always hope that new meds will be designed, especially as so many Covid "long haulers" are having "cytokine storms" and Dr. Afrin et al think that is directly connected to Mast Cells, so perhaps the "Pocket Protector Pundits" will come up with something to help them...and us. :)
TR Savage!!! Your comment brought the maternal unit and me much joy. It would bring Cujo joy too but she doesn't speak human. Yes COVID has been and continues to be devastating and the long hauler community must be as devastated as we are. I hate to think of "silver linings" to something that has killed so many people but long hauler research is going to be so helpful for other poorly understood inflammatory illnesses. I plan on making a video on this but I thought I would tell you I am trying Gammacore for my GI motility. It's an FDA approved device for cluster headaches that I am using off label
@@BartonellaBabe I’ve never heard of Gammacore until now. I see it’s used for headaches but are you using it on your stomach?
@@sashaw.8231 I used it on my neck as directed for GI motility but it gave me nerve pain unfortunately. It was worth a try though!
Glad to see you keep fighting! I really resonated with your comment of people asking about your progress. That happens with me too and adds insult to injury when I’m fighting with everything I have to get better and of course am disappointed with lack of progress too. I know I’m trying my absolute best to get well but it still hurts my feelings when people talk like that. Wishing you the best and encouraged to see you continue to fight! Thank you for all the information and advice you put out!
Thank you so much!!! It's so hard when we aren't making progress and then it feels like we have to justify that to people (at least sometimes). You continue the good fight too!
You’re amazing Jake! I’m so grateful and impressed by everything you do with your channel 💛 I’ve actually had similar experience with the water/salt situation which also took me lots of self-investigation to crack🤪 Keep fighting, you’re such an inspiration and we’re all way to solution-oriented to die right ☀️
I think the water/salt situation probably happens more often than doctors think. My mom is a therapist and one of her patients had such strange neurological issues and she kept getting bounced from psychiatrist to neurologist and back again and it turned out it was hyponatremia. Thank you for your sweet comment!!
I'm glad you found the pattern, Jake! Keep hanging in there, I'm praying and rooting for you!
Your channel has been a saving grace for me. Thank you for all your hard work Jake! 💕 Loveee the curly hair too 🌻
Wow thank you that means so much and the hair was a good workout for my arms that I could tolerate lol
Keep it up Jake - don't cry ❤ Much Love to you and God's blessings!
George
She passed away
@@Leilexa Yes... May She rest in Peace 🙏♥
@@Leilexa I wasn't aware of that back then..
I'm surprised that you didn't win.
With enough investigation you crack even the most difficult problems... and you were definitely doing a lot of investigation.
:-(
I missed you! I'm glad you were able to figure out what the source of your most current symptoms was from! BTW, I would say that I am too kind to die. Life has been a nightmare this past year after developing SIBO from prescribed double-dose PPIs for LPR reflux, which was most likely histamine related because those symptoms are also a billion times worse. I also developed a hiatal hernia from the upward pressure that I get from SIBO, that I didn't have before all this. I often think, if I just didn't take those PPIs, I would be in a completely different place right now and then I get sad. I do love watching your videos and your interactions with your mom and Piper are priceless!
She's back!!!!!!!
Excuse me fair lady.....
My I have the next dance 💃
Peter Gabriel has great song.
Don't give up! 80s
My mantra
Too Legit to Quit!
Don't give up. You have helped so many ppl, myself included.
Thank you so much Stephen
so happy to see your face back on my sub page! I had been purposely avoiding consuming content about The Illness™ because medical PTSD is a bitch in the time right before you took your break so I'm very glad we're both back 🥰 I'm too spiteful to die hahaha
also the word breakdown section had big chubbyemu energy "hypo meaning low, Na meaning sodium, and emia meaning presence in blood: low sodium presence in blood" hahaha
I’ve been stuggling with some allergies and noticed thst water was helping. I also ended up drinking too much water and noticed that licking salt was relieving some symptoms.
Something that helps me with gas at times is an Indian digestive spice called Ajwain. I know how tough it is to try to figure things out on your own, but remember your knowledge is compounded and it will get easier and easier.
Wowww. I'm so relieved you figured this out. I've been thinking about you!
❤️❤️
While I'm a newer subscriber to your channel, I noticed the gap, too! Thanks for the update. For the fill-in-the-blank request, "I'm too ____________ to die . . ." My word is 'Essential.' I know that sounds a bit self centered, but even moreso, YOU, Jake, are essential to so many of us who have found your YT channel and FB group. By allowing us to see your successes, struggles and even opportunities at 'failing forward,' you've encouraged those of us in a similar/same situation. I chose the word 'essential' because as a mother (now unemployed thanks to Lyme/Bart), I have an adult child fighting an insidious disease called Crohn's colitis. They just had part of their colon removed one week ago. Thankfully, as a nurse I know how to do dressing changes, because the homecare nurse only comes out to their apartment 2 days a week, and my kiddo has been so sick since December 1st, they can hardly function right now to do much of anything let alone dressing changes. Having Lyme/Bart is keeping me out of work, but also it's allowing me to be there for my kid, something that's so much more important right now. Also, helping my child distracts me from my own issues as I focus on them. I've been so grateful for this channel and all that I've learned about you, your story, Bartonella and the challenges this disease can bring and consider the work you (and your mom - Kudos, Mom!) put into this vitally essential as well. You both are true GEMS!
Haha thanks for noticing my absence! Essential is not self centered! Of course you are essential as a mom (and probably many other things too). I love the term "failing forward." I've never heard of it but it's perfect. I am so so sorry to hear about you and your kid. When it rains it pours. HANG IN THERE!❤️❤️
I’m so sorry to hear about your experience with hyponatremia. I was hospitalized with hyponatremia because I was misdiagnosed with and treated for diabetes insipidus. The medication caused water toxicity. It was scary as hell! Don’t give up. You’re too important for the chronic illness community to die. ❤️
I remember watching some of her first videos three years ago. I’m completely devastated by this news. I listened to a few videos tonight and I’m wondering, does anyone know - with all of these gastrointestinal issues, inability to walk or stand, and the leg pain, did she ever have a work-up for structural issues such as Tethered Cord?
Glad you are back Jake! hugs
Thank you! It's tenuous but still better ❤️❤️
'too sleepy to die' LOL LOL LOL.... loved loved loved this video. again you are here humanizing us! You are in good company, so so many people understand how you felt! Me at the VERY top of the list... these vector borne illnesses are suckish man. For me I can't take the pressure in my ears, always needed to yawn but can NEVER complete it, the dizziness, the brain fog, the kill me now foot pain lol.... my urine used to be nearly sizzling hot, now it feels too cool, whats causing that dear God another symptom??! When I first was my illest, not a word, but I know you follow, I peed on myself while sleeping every night almost, two steps from a bathroom btw, then sets in: I could not pee at all, also the "nothings moving feeling, or just moving deathly slow, lymphatic stagnant feeling... MCAS like symptoms.. organs inflamed... oh woe it's me lol.. :( Since October 2017 was the first time in my life I experience "vertigo" and the rest is history, bad bad history. I have come a extraordinarily long ways, but not far enough Jake!!! Continue to stand your ground.... You know your OWN body! Know we care and understand you LITERALLY! Guess like you, i feel too glamours to die girl!!!!!!!! I gotta slap this makeup on and deep condition this strands baby!
Which herbs do you recommend I take for Lyme?
I don’t cover Lyme on my channel so best to ask in a group or on Reddit! ❤️
So happy to see you back and better! You are too inspirational to d1e! Thank you for continuing to fight and share your knowledge and experiences. I am the opposite - don’t drink enough water and I need to work on that. But it’s good to know the signs of hyponatremia in case I can help someone else!
Awww thank you Mary. And my mom can sympathize with the not drinking enough water. She is like a camel...that gets kidney stones 🥴
I am struggling with horrible heartburn. It will last about 6 hours and it is so painful. I went to ER they said to take Pepcid. I did and it still does not help.
I’m so sorry to hear that!! Keep looking for answers and eventually you will figure it out ❤️❤️
Hello Jake, did you ever doing mycotoxin test? So many of your health problems are often triggered in people who have mycotoxins in the system.
for example: many people have Lyme infection, but are not ill from that. once they get mycotoxins in the system, those mycotoxins weaken the immune system so much, that Lyme disease comes out. They might do several years of antibiotics against Lyme disease with no real success. When they discover that they have mycotoxins in the system, and they detox those mycotoxins, often times the Lyme disease years without any further antibiotics. I imagine the same might be true for Bartonella. if you have mold illness because of mycotoxins, your antidiuretic hormone goes down to zero, which makes you pee out all water, and drink huge amounts of water, also with the risk of hyponatremia... mycotoxin illness very very often times causes Sibo and SIFO and other fungal colonies in the body.
Mycotoxin illness also causes Marcons infection, which is well brings the immune system down and it is impossible to hear from all the other secondary infections that turn into diseases. The reason for my Sibo and chronic health problems was mycotoxin illness, and once I started to treat that I got better. 24% of the population cannot detox mycotoxins naturally, so a two-week stay in a bad total room in childhood can be sufficient to get intoxicated enough to have all those health problems.
that's why I wonder if you ever did mycotoxin test? If you didn't do it, I would strongly recommend it or at least that you get good information about it and then make a good decision if you do want or you don't want to Do the test
Glad to see you still fighting. I just told my husband I had not saw any videos and I was worried. I know how you feel. It’s been a living hell but I have to do this, I don’t want to break my families heart. I had to laugh because my son saw me watching one of your past videos and ask me if you lived around here and do you have a boyfriend. I said no she not in VA and as the boyfriend... I think her main focus right now is like me, getting well. Your in my prayers.
Oh wow thank you so much for worrying about me. I was worried about myself too 🥴 I’m sorry it’s been a living hell for you and I completely empathize. And lol! You are right. Dating is one of the things farthest from my mind. Eating more foods comes first lol
Oooh, I don't have bartonella but I can relate to the subject on salt, as this is something I've been recently thinking about! I've had some bad night sweats even when it wasn't warm. I remember eating lots of salt and wonder if that's why. I also think about salt and Iodine and potassium in relation to my skin issues, which can also be in relation to the thyroid gland and hormones. I think I initially stumbled on your channel through learning about SIBO (Yes I got tested and don't have it, false negative perhaps - wishful thinking, I kind of wish I had SIBO so then I could potentially blame my acne on it then cure it. Guess again). When a person has been suffering for so long they can sound like a broken record - I must have broken so many records by now lol But yeah... the suffering is real whether that be sh*tty bartonella or sh*tty acne, it all stinks the same lol
Something I noticed about you in all your videos is how oversharing you are, not just with your mom (mum) but the general public, and crudely so. You are attractive, clever, funny, and have Bartonella - You have a lot going on with you lol Does bartonella deserve a captial B? I don't think so. Um, the 2 thingies you mentioned - You have 2 choices, carry on or not, might as well carry on (sounds lame I know). I refer to death as being comparable to sleeping, as in, you don't know you exist. Yeah it's cynical to not believe in the afterlife but it kind of goes hand-in-hand with the above. And the other can be... Well, because everyone suffers to some extent or another, so you are never alone, so let's stay in this sh*t together. I think I once said to you you'll always be lowering your expectations and it brings you back down to rock bottom again. You'll forget how many times you've picked yourself back up again, but always onwards and upwards. No, not heaven lol Just keep trying and never ever give up. Ok so I've babbled and probably cheated but fu*k it. See you in the next video!
I was wondering welcome back & Thank u🫶🏿
I am having the same issue with hydration issues-all my tissues. I think it’s related to Aquaporins. Possible Diabetes Insipidus or assault on the water channels (I have positive NMO/ Aquaporin 4 antibodies, yet no lesions on my brain…)
I was Bart positive too but having some severe MCAS problems too.
I really hope that things will get easier for you very soon! 🌷 And... I am too ___musical___ to die 😛 This will become my motto from now on. Love that you keep your sense of humour even in difficult times. That's inspirational! My very best wishes 🌺🌺🌺🌺🌺
I love too musical to die! All these responses have been great!! And my best wishes back to you too ❤️❤️
So happy to see a new video! I have given myself hypernutremia before. I felt drunk!! I was so confused for a couple of days even after I ate salt and reduced my water intake. I also have trouble starting my stream to pee. I think mine is related to having pelvic floor issues which also causes me constipation and other more difficult issues. In order to pee I have to put pressure on some other part of my body so my pelvic floor will relax and/or be otherwise distracted. It’s interesting you have to focus to pee because it’s the opposite for me! I’m sorry you are still struggling with your SIFO. I have been trying to treat my SIBO for a bit now and it feels impossible. I tried Xifaxan with no success or improvement and now I’m on the Low FODMAP diet. Anyway, I love your videos and I’m glad you’re hanging in there. I’m too stubborn to die, I suppose.
bhahaha being too stubborn to die is great! Maybe it's even adaptive lol. I think it's actually pretty easy for us with chronic illness to accidentally give ourselves hyponatremia given that we are encouraged to drink water and the association of salt with high blood pressure but obviously we have to keep all that in balance. Very difficult!!!
aww Wishing you well. I have been in dark places like that. Hold on. I am far from 100% but keep fighting. My latest is trying the Pridgen protocol for fibromyalgia. have you explored this? it's in clinical trials now. he has helped people with a lot of GI issues. I see him directly and he takes insurance. I am praying this is my remaining piece after treating bartonella since that, while it did help, alone was not enough for me
Glad to see you back. I'm too smart and good-looking to die. At least one of those is true. We really have similar path in terms of gut issues. Thanks to you I figured out I have hydrogen sulfide SIBO (and before that probably methane as well). I treated that more or less successfully, but I still had severe constipation. I have treated SIFO with nystatin and the constipation temporarily resolved, but I got hydrogen sulfide SIBO again with methane (literally blew like a balloon after the nystatin treatment within a few days). It's honestly so frustrating sometimes. I recently made some progress going zero carb (honestly hate it, especially the community that is associated with it) and treating hydrogen sulfide and methane again, and I really hope that could be it. I also tried prucalopride in between, but I got all sorts of weird symptoms over time, which I can only describe as low-grade serotonin syndrome.
hahahahah "at least one of those is true" and yes I agree with you about the zero carb community. A lot of health communities are very strange and/or extreme but the fact that you've made some progress is huge! I didn't do great with prucalopride multiple times either. Headaches from the serotonin effects but they did go away after a week. I'm willing to try again, if needed, once I'm more stable
Hey bb did you try tudca? Or ginger? Or the carnivore diet?
Jaaakeee I'm so so happy for you!! Please take a look into Dr. James DiNicolantionios books "The Salt Fix" and "The Mineral Fix". Those are a level up for me
The Electrolytes is honestly where you start... They can make you feel better in an instant, like you experienced. Since you have time, maybe you'd also be interested in the work of Dr. Ray Peat and Morley Robbins...
You are a hell of a detective! We are all in this together...
Oh, and a great salt is icelandic sea salt, if you tolerate this. It has a whopping 40mg of Magnesium in 10 grams of salt. Brands that sell this are Crucial Four and Salt Verk. I'm getting the one from SV as I'm located in Europe. You can do this Jake! Please take a look into electrolytes and then all minerals. They are the body's spark plugs
Ooh.. hello❣️Interesting, very interesting..🤔..
Good Your’e getting better❤️ Thank You for sharing❣️
Thank you Linda!! ❤️
Are you back on the moziani protocol or not yet?
I’m slowly titrating up on clarithromycin. I have made it to 18 milligrams a day! Lol
Yes you were correct about the etymology of hyponatremia. You are too determined and knowledgeable (and glamourous and funny) to die. Thank you for all your videos. I always learn something. Please, if you learn more about the salt/water connection please tell us. I'm curious. I know a little but you always add lots of interesting facts and details.
well I think the most helpful thing I have learned about why it's so hard for me to regulate salt and water is that one doc told me that people who are on low protein diets (which I am and have been for almost two years because of the food sensitivities) have a harder time regulating the salt and water balance so I hope that this will get better when I am able to add more protein into my diet
Sater and walt sounds like some country folk band. I'm sure you have thought of this / sorry if this is a silly Q but have you ever noticed a difference with sodium chloride IV infusions prior / or is this something that could help ? nice to see you back!
Ooh I agree about the country folk band 😂 and actually when I was getting IV saline when I had the sater and walt imbalance, it started to make me tired and brain fogged because I needed even more salt than that. I just had a really interesting and illuminating discussion with Dr. M on this topic. Fair warning I’m going to simplify it because it don’t totally understand it yet but basically when you drink too much water, it’s almost like you recalibrate the kidneys to expel all that excess water so getting back to normal is a transition. I was able to transition down to a gallon a day but I still need to monitor my salt intake all throughout the day to make sure I don’t get brain fog but he said that a diet low in protein (which mine is) makes it harder for the kidneys to hold onto salt as well. So today I’m going to up the lentils a teensy bit as a stepping stone to getting more balanced
@@BartonellaBabe ah yep gotcha fair fair, i hope upping the lentils goes well for you, it's great you have figured out what is causing that issue - so you can come up with/put that plan into action to help decrease that brain fog and tiredness! and then the more videos you can make hehehehehe
Hi jake! Glad to hear an update from you I’ve been wondering how you’ve been doing. In terms of salt intake, I take a product called salt stick vitassium which are buffered electrolyte salts (I take it for POTS). The ingredients are: sodium chloride, potassium citrate, hypromellose (vegetable capsule), vegetarian stearic acid if those ingredients work for you. I drink a ton of water a day and have to balance it out with salt, much easier taking the pills than eating it through food. Also my motto is “too hot to die”, I’ve been listening to too much Megan thee stallion what can I say something for thee hotties slaps
BAHAHA I love the "too hot to die!!" 😂😂 Yes you are girl!!! No such thing as listening to too many hottie slaps. I have heard of vittasium! I can't do the veggie cap or stearic acid so the Redmond's salt (which has minerals and shiiiiit) has been working well for me. I also don't need as much as a pots person so just eating salt works. Also, I find that when the salt is absorbed through my oral mucosa, I get relief a lot more quickly and potently than if I were to swallow it. I'm actually planning on doing a dysautonomia and Bartonella video as soon as health circumstances allow!
@@BartonellaBabe oh interesting I’m glad that eating salt straight up has been helpful! Redmonds is good stuff. For research I want to say there might be content on the dysautonomia international TH-cam (lots of webinars there) and their website. Hope you can rest and take care in the meantime! Got to put yourself first :)
@@ashleywinter6217 thank you!!!! The Dysautonomia International website is FANTASTIC but I didn't know they had TH-cam webinars so thanks for the hot tip. I will def be checking those out
My dog opens my bathroom 😂 I can relate
😂😂
Also you may want to read up on vasopressin and VIP.
Too curiously stubborn… have to figure this puzzle out!
Love "curiously stubborn!" more substantive than glamorous lol
I'm just too stubborn to die. Jake, of course you were missed, I was low-key worried, but I knew you must just be figuring something out.
Something I love and will borrow is how you paused to include your mom in describing your self-diagnostic process. My husband is that person for me. Illness is not something that just affects one person. It's changed our family. But in that is something really sweet--that I have a collaborator and a witness as I act as my own detective. And your mom's presence on the other side of the camera is so sweet, too.
Coincidentally, last weekend I had a very serious flare that involved a couple of days of vomiting, diarrhea, and not eating or drinking, and while MCAS and SIBO have from the beginning presented heavily in the neuropsychiatric column for me, this was the first time in my life I have experieneced hallucination. I thought I was dead and that the reality I was experiencing was Hell (NOT THAT FAR FROM THE TRUTH, AM I RIGHT???). My mom came over to talk to my husband about whether anybody would help me at the ER or whether that would just hurt me more and she told me to drink electrolytes and have a peice of matzah and I came back online in two minutes and was at least lucid again. So yeah--basics.
all I can say right now is *hugs*
@@BartonellaBabe aaaaaaand I was hospitalized for hyponatremia this week. It's the hottest trend of the summer, Babe. 😎
Yikes is right
The hydration tablets are basically salts our bodies need after drinking a lot or sweating.
Yup. My functional medicine doc said stop drinking SO.MUCH. WATER. I think one issue chronically ill people do is drink too much water.
Since everyone is chiming in on their favorite salt products… Healthy Salt. Pricey but extremely effective.
I usually don't love suggestions lol but I will take suggestions for salt any day! I love salt!! haha
LMNT supplements
Kannst du das Video Bitte mit deutschen Untertitel machen ? ❤️
Yes I will try to do this soon!
I’m too cool and determined to die! Besides my path is divinely led by God! I add pink Himalayan salt to my 🍋💦, perhaps I will switch to iodized salt..
Haha I freaking love these responses I’ve been getting, including yours! Cool and determined is a winning combo for living, I’m pretty sure
My sister is a biologist, and says humans probably taste like pork. Since we're omnivores.
try animal-based grass-fed (carnivoreMD) diet for gut? my gut is like heaven on it (despite tons of abx over years for lyme in the past). plants can hurt gut a lot. i have very little bloating eating this way. be suspicious of plants.