You look SO much better today. I was worried about you. I hope this doctor's visit is helpful. Looking forward to the updates.

My mom was one of 2 people diagnosed in the world with a rare form of Muscular Dystrophy called a Carnitine Deficiency. That was 20 years ago... I'm glad to see that you are able to live your life to the fullest.

Best of luck Jaq. Will be praying you can get some more answers or even new treatments. Here is to hoping everything goes well! 💕

Good luck in your journey Jaquie!! Your videos help me stay positive in my own journey too, thank you :)

Hey Jacquie love you a bunch..just wanted to say your hair is getting better and better each video those products are working and it's looking more full rather than thin. Good luck with the doctor..you keep me going through my sick days which is everyday. Thank you for letting us in.

I was just watching a video about videos that went viral in 2017 when I recognise Harlow bringing you ranch instead of water when I got the message that you uploaded a new video😂👍 I really enjoy watching your videos and they help me learning english a lot, so thank you

I'm glad you are feeling better! Good luck with your journey. ❤

Hey Jaquie! I'm not a geneticist, but I do have a masters in molecular biology and genetics and I'm looking into a doctorate project in human genetics. From the little I know about mitochondrial genetics, there's benn A LOT of advances in the last few years, including a paradigm breaking discovery in heredity (turns out they come from our fathers too!). I hope you find out more about your body as to help your health journey, and the new doctor is helpful in that!

@katelynwhitaker9818

5 жыл бұрын

Jéssica Bonomo I’m in the same field! Crazy about paternal inheritance of mtDNA. Have you heard of the 3 DNA donor embryos where they edit out damaged mitochondrial disease so it isn’t inherited. So crazy

glad you're feeling a bit better! love you Jaquie!

I feel you. I have a mitochondrial syndrome and only 7 people have it. It’s to blame for ALL my symptoms and diagnosis (just like you, theres a lot) . It was only discovered about 4 years ago but thanks to new research it has an official name and papers are being published and more and more is being learned, it’s amazing how fast it all can happen. I have hope that they will at least know SOMETHING new when you visit. GOOD LUCK!

Iam so glad your feeling better I hope things only get better Harlow is adorable as always love you Jacquie

Hope you feel better soon, Love you guys ❤️

My goodness that pup has SO MUCH energy

Bless your heart!!! I hope you get some answers!! You deserve it!

Good luck. Hope this dr helps with more testing & answers that prove beneficial with treatment.💗

Good luck Jaquie! Oddly my health journey seems very similar to yours. I have future Mito testing, my doctor plans on me getting a port due to bad veins and I have absorption issues, so I have IVIG in my future, saline infusions, iron infusions, and probably lactated ringers too. It helps to watch your videos, because it gives me some idea of what I am in store for. I've also learned a lot about advocating from you, so thank you so much for all you do. My illness count is getting high too. It can be intimidating and frightening.

Glad your feeling better. I hope you find some good information and i love Harlows bandanna

You have no idea the weird happiness i’m Feeling right now! I also have mito and EDS but I’ve never seen/heard of someone else with that combo. ☺️ First off it sucks but second I’m really just so happy that I’m not alone.

@marieked

5 жыл бұрын

Lin Jay I have a number of friends who have (had, they’ve since passed away) with mito and eds

@kelciemiller-anderson7896

5 жыл бұрын

I have mito/EDS too!

Wish you the best at your appointment!!! I hope they have some treatments for you!

Loved Judds story, would love to hear more stories from him, he tells them so well! Good luck with the geneticist, I’m early on the road to finding out if we can the genetic route of all my problems x

SonHappy your feeling better ❤️👍 I am only 2 hours from St Augustine, north at Fl/Ga line, going to be pretty this weekend. St Augustine, it’s a gorgeous city, I love going to beach down there, well for me it’s down there💕 lol Harlow having a dog fun 😆 at the Park! Hope you’ll have a nice relaxing trip. Sending Blessing your way. When my Doc retired I finally got the right diagnosis, for my stomach issues, she is so good! feeling so much better! Safe journey. Harlow is doing the zoomies, my Visa does them too! 😍✌️🙏💃 go have fun

Im glad ur feeling a little better now Hunnie.... sending more huge gentle hugs ur way n ur feeling more “our kind of normal” again real real soon xxx

So happy you are feeling better, always glad to see you get out. Does you medical team ever make you diary to look back and examine objectively in a medical way your flare ups? If so what exactly do you and they do and can you share that? Praying your check up with your doc on your mito issues goes well and sheds some light for you. Some key points for folks to keep in mind if you do not know- Genetic issues-we are all born with a set, how easily they turn on in our lives depends on the insults life can place on them, from pollution anywhere, chemicals like meds and vaccines, foods that are not good quality-over processed-don't agree with us- poor lifestyle there is a myriad of reasons but we will all get some reason at some point and yes some of us are more prone, good news is we are discovering how to turn them on and off and sometimes as easy as changing lifestyle or adding a certain lifestyle, like most Americans do not eat healthy fats nor have collagen in their diets and so many in the medical community argue over such things making it harder on people to figure it out and please remember one should always exhaust natural means before considering any artificial means or drastic surgeries- see here for resources-www.ted.com/topics/genetics www.ncbi.nlm.nih.gov/books/NBK19932/ ghr.nlm.nih.gov/primer/howgeneswork/geneonoff www.thelancet.com/journals/lancet/article/PIIS0140-6736(18)31268-6/fulltext?dgcid=raven_jbs_etoc_email Mito issues-my.clevelandclinic.org/health/diseases/15612-mitochondrial-diseases Anything in our bodies can be affected at any time, scary but can also provide answers and solutions so like Jaquie never give up and keep moving forward, remember it is about the journey, so be safe, be good, be well, be joyful and find the love in it along the way, of course, share = caring, blessings!

Good Luck I hope you get some better answers to help your health!!! Take care and get some sleep!

Hopefully this dr will be able to give you answers and help get treatments that help you. Good luck.

Interesting video, full of info. Thanks.

I'm glad you're feeling somewhat better :).

I absolutely love Juds stories

I am not from the US, but I don't understand how a hospital (or similar) does not accept to be paid through insurance??

@AllyssaButhmann

5 жыл бұрын

In the US, providers have the right to not get accreditation with insurances. These doctors, often called concierge medicine doctors, have you pay all their fees, without insurance. The doctors find it easier to take care of their patients, and have fewer hoops to jump through. Also, medical procedures, not covered by an individual’s insurance, are, now, available. These concierge doctors have fewer limitations on what a patient can and cannot receive. The overall quality of care is much higher and tailored specifically to each individual patient’s need. I see a concierge medicine doctor, myself, and I went to him when no other doctor would listen to my needs. I pay $1700 per year just to be a patient in his practice. The fee is worth it, because I am getting my very specific medication resistant Postural Orthosatic Tachycardia Syndrome(POTS) treated the way my body best responds.

I dislike car rides with my possible Gastroparesis diagnosis.😢 The nausea, vomiting and pain make a car ride so miserable now.😱 I have been to St Augustine and it's so beautiful there.🌴Hugs from the coast of Oregon.💜 #davesandersstepdaughter

I hope you can find some answers and some help. My thoughts and prayers are with you 👍😇🙏

Old navy has compression leggings that are amazing for Orthostatic Intolerance if the weather allows!! Also, I’m excited for you doctors visit. I’ve seen some thought online that mitochondrial disease could be linked to ME. So many of the answers you’ve gotten have helped me get diagnosed 👍

I really hope this appointment has gone well today xxxxxxx

Good luck with the Geneticist. I know what it is like trying to figure out a diagnosis to something that you know is very wrong but now you have to find out how to properly treat what you know is wrong. I love your videos and I would love to see your very first video. I looked and I'm not shore what your very first video was and I think I started seeing your videos later on. It would be nice if you could post the link to your first video and it would be nice to have a video that hi-lights your progress from the beginning to present showing whats happened along the way. I noticed one of your videos the intro was a bit different from most of your videos today.

Mayo will not take my insurance. I have to drive from Florida to Ohio to see my geneticist. Again, insurance refused to cover my tests. I still have no answers. I would love to know the new one you are seeing, if you like them.

@nikolainewton2295

5 жыл бұрын

Yvonne Kass, I'm sorry

@MissLeopard28

5 жыл бұрын

Mayo doesn't take my insurance either. Unfortunately, I have an HMO. :(

@sarinafrohn6751

5 жыл бұрын

Why wond he whant ensure s it monny

My prayers are with you

Saturday I'm driving from Miami Florida to Chattanooga Tennessee with my service dog. its a 12 hour drive.

I hope that your journey goes well and that you get good information! At 6:15 you said you would put a link in the description to a resource for Mito. When you have time, could you do that? I am interested in reading about it.

Good luck I hope they can help you love you guys

Love your shirt

I was diagnosed at Mayo with EDS by the second geneticist that I saw there. He left mayo and has his own practice in Jax now, Dr. Atwal, and specializes in people like us!

@madiweaver1653

5 жыл бұрын

Lol now that I’ve watched a little further, realized you know about him. When you’re able, I suggest seeing Dr. Atwal! He’s also super willing to respond to emails whether or not you’re a patient of his, and does skype appointments! Good luck with your new geneticist, I am from St. Augustine and honestly wasn’t aware there were any decent ones there!

How can you do a feeding tube bag portable like that? My sister has to have hers hanging up because we don't use a pump and just use the bag directly gravitational into her tube. We used to use the pump until the company changed the manufacturer of the bags on us and we weren't able to get kangaroo bags anymore. Its difficult when the insurance changes from something that worked for such a long time to a more cheaper product that's difficult to use. My dad has had a few break open because he cant close the top of it tight enough. Being on medicaid/care we kinda get pushed aside on medical products and things she needs for her CP. We're lucky to get her supplies delivered on time before they run out. Living in Florida things have been hard to get certain waivers approved. Watching your channel it seems so easy for you to get what you need jaquie. I only wish more people could get the same kind of treatment.

I lived in St. Augustine when I was a toddler.

Is it possible that your mutations aren’t a medical disorder? Like isn’t it possible that many people have mutations that doesn’t lead to issues?? I had thought I had learnt that?

When you started talking about it (i'm just calling it "it" because I have no idea how to spell it😂) the first thing I thought was "the powerhouse of the cell" .. and I only know that sentence because of american tv shows 😂😂

@nickywallington9166

5 жыл бұрын

(It’s spelled mitochondria in case you want to write it)

Hey Jaquie, I am looking to move from Iowa to Florida. I have hEDS, POTS, and a whole host of other medical issues. I was wondering if you knew of any resources in the greater Orlando area that helps disabled people relocate. Thanks, Allyssa.

Your dog park is so sad! Why is no one ever there? It’s so beautiful!

@ChronicallyJaquie

5 жыл бұрын

I agree 100%! No one is ever there. But, at the same time, it is kind of nice. We do not go to busy dog parks because I worry about who is vaccinated and who is actually friendly. Every once in a while there will be another dog though!

My insurance does not cover genetic counseling so I can’t get confirmation if I have EDS unless I pay out of pocket. I did do have mito in MTHFR which is typical for people on the spectrum. I did out of pocket genetics for medication reactions and also for nutrition as I felt those are important and have helped. I want to get into NIH and research studies. I also have PI and want to know if there is a genetic aspect which I think there may be from 23 and me run through livewello. Jaquie do you think you will ever go to the PI conference through IDF? I look forward to the conferences each year to learn more about my immune difficulties.

If there's a site on mito illnesses you like for educational resources, what is it? Best to you, Jaq! Looking at a geneticist at UCLA for a work-up bc chronic illness.

Have you ever tried the nutrition supplement Spectrum? I am new to the mito disorder community and this is one thing that my doctor wants to get me on. I have heard great things about it but it is pricey, but if it will help me I think it would be worth it, plus it is ok to go through my J-tube.

What is the name of the geneticist you are seeing? I too was diagnosed at Mayo by Dr. Atwal, but I really need the blood work to determine or rule out the vascular type EDS.

You look better!

What food are you feeding Harlow now?

Luck and love ♥

what is mitochondria because how it effects you

Hey Jaquie! What is your email?

Hey jaquie

Not trying to be rude but when you are in a flair are you able to make Judd something to eat. When im in alot of pain from my pancreatitis i try to make my wife something to eat most of the time i cant. How do deal with this problem?

0:25 Yes I do, and I'm glad to hear that you're feeling better. 6:53 Judd's seatbelt is twisted again. I've noticed that before, and I'm still wondering if he really prefers that.

I know it’s a little late and I didn’t know which video to do this on, you probably won’t see this comment anyway but here it goes. Happy cerebral palsy awareness day y’all, March 25th is national cerebral palsy awareness day, and I would make my day if you showed your green in support

I totally feel you on the "see the geneticist" for the diagnosis" and then having another Dr for treatment. I feel like it's similar with mental health. The psychiatrist and psychologist thing.

Are you able to drive again because it looked like you was in drivers seat?

@nickywallington9166

5 жыл бұрын

Yeah she’s been able to drive shorter distances for a bit

You should start a go fund me to help pay with medical costs that you have to pay out of pocket.

@ChronicallyJaquie

5 жыл бұрын

That's very sweet! But we can budget well for what I need. We don't need to see the out of pocket geneticist because we have this one who takes insurance. 😊👍💕

Did you know? Mitochondrial diseases can only come from the mom ! ;)

@janetatum8966

5 жыл бұрын

This was longg thought to be true and a "rule" in science...but recent research shows it seems males can pass along some mitochondrial genes or traits as well too! Seems they're gonna have to re-write a lot of literature!

wow how much is a specialist over there that driving 8 hours and booking a room in a hotel overnight is cheaper than paying for an appointment without insurance 😱

@ChronicallyJaquie

5 жыл бұрын

The out of pocket geneticist is only like 30 minutes away from the one we saw, so we would also have to drive 4 hours (more like 4.5) each way and get a hotel. 🤷‍♀️ So much more expensive. Plus I have seen that geneticet already and feel he already did all he could for me. Also, the hotel was booked with points. 👍

@saphiaer

5 жыл бұрын

Chronically Jaquie o ok cool! Thanks for taking the time to explain it to me, the American healthcare system fascinates me. I’m glad the cheaper option seems to also have been the better option with what you said in your recent update 😊

Haven't watched in awhile..your face has really filled out. Are you eating more?

@ChronicallyJaquie

5 жыл бұрын

Yes! 🙌 New treatments have greatly improved my GI health. I'm not even on feeds as much as I used to be. Though currently I am in a flare so... That is why I am running them so much at the moment.