Jaquie thank you so much for your eloquent and comprehensive information. I am battling gatroparesis and suffering horribly. Your information has helped guide and inform me in making decisions about my own care. You are such a blessing. Prayers for healing for your entire body.
Wow congrats on your new treatments! Hopefully will keep your flares away and have better overall health from Mito symptoms. Praying for you that you will be much better! Thanks for the update.
Hi Jaquie! My name is Addie and I've been watching your channel for a few years now. I don't usually comment on TH-cam videos, but couldn't help myself today. I am actually from Ponte Vedra, Florida, and have been seeing a geneticist there for years. Since I was in elementary school, I have suffered from multiple health problems and could never find a diagnoses or solution. When my family moved to Florida in 2011, we began searching for doctors and eventually found my geneticist (by the sounds of it, I wouldn't be surprised if it was the same doctor but you definitely don't have to disclose that information). He was SO knowledgeable and finally my mom and I didn't feel like we were crazy anymore! He diagnosed me with POTS and mito and I started many medications, including Levocarnitine. My health improved so quickly and I was finally able to be a normal kid again. One of the biggest physical changes was my hair. My entire life, my hair had never grown past my shoulders, but within a year and a half of seeing him, my hair was down to my waist. He had told me it was because my body could only make enough energy to use on the essentials, so growing hair wasn't an option. Anyways, I just had to share my little mito story with, as you have shared so many stories with me.
Jaquie! I’m so happy that you have been able to find such a knowledgeable doctor for your Mito! I’m hoping and praying that these new treatments make a difference in your health. I’m so happy for you!
I'm so glad you had a good appointment! ^_^ I'm just starting my journey of tracking down geneticists myself and I hope to have such good luck as you did with this guy.
So glad that your new doctor has ideas to move forward with. It can get depressing when you feel like you are stuck in one place spinning your wheels and getting nowhere. 🌸🌿
I am so happy that you are feeling much better and that your appointment with the geneticist went well!! Praying that his treatment plan for you will make a positive impact on your health. 🤗❤️🙏🏻🙏🏻
Hi there. Just wanted to say how much I appreciate you and your channel. I have POTS and also just got a GTube a few weeks ago. I really appreciate all the videos you have on supplies and tips for your tubes. I’m also looking for more diagnoses and answers to my health, and people like you really encourage me along the way. Keep moving forward. ❤️
So so happy you’ve found such a good geneticist! It really makes my heart happy when doctors can do what they are meant to and inspire the patients with hope while doing so 💚 this seems like a life changer
I would love his name. I cannot use Mayo Clinic due to my insurance and Shands was not helpful for my disease. Right now I travel 1000 miles to Ohio for my genetics doctor and would love one in Florida.
Probably not. I was trying to look Up research on the rarest form but couldn't find anything about it. This disease is confusing. Mitochondria is rare. She says all her cells are mutated. According to the NHS/Mayo when most of your cells are mutated it's most likely fatal.
We would *all* love to know his name!! But I guess it’s probably not a good idea to share it with us - otherwise this doctor will have one million new patients all wanting to see him 😅
Oh Jaquie, I am so happy for you! How fantastic to find such an excellent doctor! As for accidents in hotels, as a former housekeeper at an inn, please don't feel badly about being sick. It is really not a big deal. It was good that you mentioned it to the front desk so that the housekeepers could be prepared, but I have seen way worse in rooms, and definitely not due to illness! 😝😉
What amazing news!! It’s so important to have a doctor who understands your issues and works with you to find relief in certain areas of your issues where other doctors have failed to help. Almost like “seeing a light at the end of the tunnel” Have a great week
I’ve been following you for awhile and I’ve been hoping you’d get more answers as to why you have so many chronic conditions. I didn’t realize you’d done genetic testing before but I am so happy you finally found a doctor who is experienced with complex cases and who isn’t just treating the symptoms of your conditions. And also a doctor with a great bedside manner who doesn’t see his patients as just a number but as people who need answers and treatment. So glad you are getting somewhere and starting to feel better!
This sounds hopeful, Jaquie. You look better which I'm happy to see. It's so good to find a doctor you can trust. It makes such a difference. I have a good feeling about this doctor. Good luck!
Jaquie I have to tell you, even when you're not feeling well, you always look beautiful. Glad you're beginning to feel better. I really enjoy your channel so much!
So glad that you were able to see this Doctor at this time. I can almost see the palpable relief you must be feeling in your body language. And I am sure that in a situation where more knowledge=better quality of life you have hit the motherlode here. How validating and reassuring it must have seemed to you to finally see a Doctor who not only understood your condition but was also ready to take on the challenge of helping you and seem unfazed by it all. God Bless you my dear dear Jaquie.
This sounds so great. I hope this helps with your exciting new move to your new house. Just remember that moving is exciting, but very stressful. It took me a year to feel comfortable in my new house. I was so excited; it being my first house. My sons could walk to school, it was amazing. I can’t tell how depressed I became. It was strange that my dream came true, then depression set in.
Yes!!! I’m so very happy you are feeling positive ! I Hope one day you will Share his info with us .. I am in Tampa as well and would be happy to make the drive ..
So happy for you, great job finding a good doc, the sad thing is most doc should know more about this but too many docs just want a textbook patient, sad really. Did this doc have any suggestions for on the road foods as you go through these changes? Keep sharing = caring, continued prayers and blessings. Clearly this doctor is evidence based which looks at research, clinical expertise and weighing in the patient's needs. May the Good Lord continue to provide on your journey, stay positive!
Traveling is harder for people with chronic problems. I was stationed in Jax and had 2 of my numerous spinal surgeries there. You hang in there, you are helping so many people by your TH-cam channel, but remember that you come first so don’t feel bad if you have to take time for yourself, we’ll be there when you post.
So happy you found a good Doc at Mayo, The only Hospital I would ever go to for consult or surgery, that’s where my liver transplant Doc, everyone says they give best care, in Hospital too! Thank goodness your feeling better
So happy for you. As a person also suffering with Dysautonomia it can be very tough. Now looking for a geneticist for EDS diagnosis. It’s been such a tough road. But I keep pushing through. So very happy for you.
🙌 Praise God …🙏 Answered prayers … Not only are you blessed by God; you too are highly favored by our Awesome God !! Keep facing forward on your journey. I admire how you have incorporated that you are a Christian out in your videos. I enjoy watching your adventures. And, oh yay…do you think I’m the only person who waves back at the end of your videos? 🤗👋
Glad to hear things are getting better! Did they give you any details about what your gene your mitochondria mutation affects? I'm a biology student and mitochondria disease is very interesting to me.
So happy for you Jaquie, will be exciting to see any results! Idea for video: a run through of all the doctors that you have! Not their names but what kind they are, if they consult with each other, what do you do if they give conflicting advise, etc!
@chronicallyjaquie I’m really happy that you went for another opinion it’s really great you found a really amazing geneticist. I hope that when I my second opinion appointment comes up that the geneticist is as amazing as the one your describing!!
Was misdiagnosed at Mayo a while ago..ultimately led to a couple of years before effectively treated. Great you've found a knowledgeable Dr . Hope you continue to improve!
I'm so glad your appt went well! I get carnitine addedl to my TPN and D-10 to keep my sugars up and treat dehydration. Both help!I think I recommended asking for marinol when you were having pain clinic issues. If it helps with gi stuff enough to go off the mj, you can get to the pain clinic and get help with the pain. Keep us updated!
So glad they are able to find some new medication and better treatments for you. Glad your flare is over too. They can be miserable. Good luck with the new treatments.
You mentioned bringing your records with you. How often do you order your records from your doctors? I also have a medical binder and have been trying to figure out that "sweet spot" of not ordering them too often but still keeping them current, so I'd love to hear what another spoonie does. I'm so glad you found such a wonderful doctor! :)
I also have a homozygous mtDNA mutation (in the ND5 gene). The one thing that got my doctors on the road to diagnosis is finding my mitochondrial disease (diagnosed at Mayo in MN). I have GP, CIPO, CVID, (plus asthma) Addison's disease, Dystonia, Epilepsy, Hashimotos and found out I also have Factor V Liden end of last year after I got DVT in my neck and a PE. I've been on TPN for six years and tube feeds for 8. My TPN cycles 12h and I get D10 1/2NS for 4-8 hours a day. I would watch out for reactive hypoglycemia with the D10 (part of the reason I am on it is because I get hypoglycemic but my worst lows are when off them). If you doctor will allow you to use the TPN function of your pump and cycle you up and down over an hour it does help. I just got paired with my successor service dog in October and she was also taught glucose alert for that reason. Jake my reitred dog who still lives with us did not have that training so I call Dakota my "service dog 3.0" since she is mobility support, epilepsy response and glucose alert vs Jake who doesn'nt do glucose. :)
So happy for you that you have found such a knowledgeable and proactive doctor and you have already felt positive effects. So, so happy that you are so happy. 🌸🌷🌺🌸🌷🌺🌸 🌷🌷 xoxo Jamie and Sable🐶 🌷🌷
That is wonderful for you! I’m on the journey of trying to get a diagnosis of connective tissue disorder whatever it may be. Because you have shared your journey coupled with a few others I finally got diagnosed with POTS. There has been a suspicion of possible EDS or Marfan but nothing confirmed yet. I recently was in the hospital and they found 18+ Tarlov cysts (cysts on the nerve root filled with spinal fluid) all down my neck and thoracic spine. It is highly unusual to find more than maybe a couple at most! I have an extreme and two part of my spine haven’t even been scanned yet which is where they are most likely to be! To have such a number is typically indicative of a connective tissue disorder. All signs are pointing to that so we shall see where this journey continues to bring me.
As odd as it is to say...I've really enjoyed watching your health improve Jaquie! Compared to your earlier videos, you look so much better! Thanks for the great content and education! As someone who's perfectly healthy for the most part, I like watching your channel to learn what other people have to go through and to understand it in a different light. If I ever see you and Harlow in person (highly unlikely as I live in Ontario, Canada), I'll make sure to say hi and give Harlow all the pets with my eyes (only with the eyes, but no eye contact with her! I will not distract the beautiful Hippo!).
I’m at Mayo Clinic in Minnesota right now to get opinions on whether or not my colon needs to be removed because of chronic constipation. Glad you found some answers. I’m still praying for the same for me.
Hi Jackie. I'm on d5 weekly!! Tried Marinol but made tachycardia worse. I was also on a compounded medication called ABH (mix of Ativan, Benadryl and Haldol)! I have gastroparesis, mast cell, EDS, and Autonomic dysfunction also.
Info dump: Carnitine is a molecule that allows fats to enter mitochondria to be broken down, which is important b/c your primary energy source is fats when you're resting or lightly exercising!
I'm heading to Mayo Clinic Jacksonville to see my new cardiologist, would it be possible for you to tell me the name of this genetics doctor? I saw one at Cleveland Clinic in Ohio, but that was 7 years ago and I still don't have a diagnosis.
Ativan is amazing, I totally get the not liking it but it does wonders for nausea but also can help calm the nervous system (not even for emotions but just in general) which can allow for the body to allow other treatments to really take hold
My mom takes Levocarnitine for her Muscular Dystrophy, but she has to take liquid form cause tablets don't have a high enough dose and because her body won't absorb it without a special fatty acid she has to take along with it.
How rare to have such an understanding hotel manager.
Agreed!
It’s such a relief to find a doctor who believes and supports you, and has ideas to help!
Jaquie thank you so much for your eloquent and comprehensive information. I am battling gatroparesis and suffering horribly. Your information has helped guide and inform me in making decisions about my own care. You are such a blessing. Prayers for healing for your entire body.
Wow congrats on your new treatments! Hopefully will keep your flares away and have better overall health from Mito symptoms. Praying for you that you will be much better! Thanks for the update.
Hallelujah for finding answers and treatment! With chronic illness that seems so hard
Hi Jaquie! My name is Addie and I've been watching your channel for a few years now. I don't usually comment on TH-cam videos, but couldn't help myself today. I am actually from Ponte Vedra, Florida, and have been seeing a geneticist there for years. Since I was in elementary school, I have suffered from multiple health problems and could never find a diagnoses or solution. When my family moved to Florida in 2011, we began searching for doctors and eventually found my geneticist (by the sounds of it, I wouldn't be surprised if it was the same doctor but you definitely don't have to disclose that information). He was SO knowledgeable and finally my mom and I didn't feel like we were crazy anymore! He diagnosed me with POTS and mito and I started many medications, including Levocarnitine. My health improved so quickly and I was finally able to be a normal kid again. One of the biggest physical changes was my hair. My entire life, my hair had never grown past my shoulders, but within a year and a half of seeing him, my hair was down to my waist. He had told me it was because my body could only make enough energy to use on the essentials, so growing hair wasn't an option. Anyways, I just had to share my little mito story with, as you have shared so many stories with me.
I’m so happy for you! Finally finding a course of action is amazing.
Jaquie! I’m so happy that you have been able to find such a knowledgeable doctor for your Mito! I’m hoping and praying that these new treatments make a difference in your health. I’m so happy for you!
I'm so glad you had a good appointment! ^_^ I'm just starting my journey of tracking down geneticists myself and I hope to have such good luck as you did with this guy.
Really glad to hear you've found some promising paths for treatment, Jaquie! Onwards and upwards :)
So excited for you! It is always so exciting to have a doctor that has knowledgeable options on how to help!
Sooooo haappy for yoouu!!! Finally someone who can help and support you with a lot of knowledge and compassion!!
I'm so happy you found a Dr who is ready and willing to help you take your treatments to a new level.
So glad that your new doctor has ideas to move forward with. It can get depressing when you feel like you are stuck in one place spinning your wheels and getting nowhere. 🌸🌿
You look so much better! Thanks for sharing what has been working for you! It will help many people!
I am so happy that you are feeling much better and that your appointment with the geneticist went well!! Praying that his treatment plan for you will make a positive impact on your health. 🤗❤️🙏🏻🙏🏻
I am so happy that your new doctor is so knowledgeable!!
Hi there. Just wanted to say how much I appreciate you and your channel. I have POTS and also just got a GTube a few weeks ago. I really appreciate all the videos you have on supplies and tips for your tubes. I’m also looking for more diagnoses and answers to my health, and people like you really encourage me along the way. Keep moving forward. ❤️
So so happy you’ve found such a good geneticist! It really makes my heart happy when doctors can do what they are meant to and inspire the patients with hope while doing so 💚 this seems like a life changer
I would love his name. I cannot use Mayo Clinic due to my insurance and Shands was not helpful for my disease. Right now I travel 1000 miles to Ohio for my genetics doctor and would love one in Florida.
I would love his name too! Let’s see if she will share it with us. 🤔
This country is corrupt when it comes to healthcare. Richest country my butt!
Probably not. I was trying to look Up research on the rarest form but couldn't find anything about it. This disease is confusing. Mitochondria is rare. She says all her cells are mutated. According to the NHS/Mayo when most of your cells are mutated it's most likely fatal.
We would *all* love to know his name!!
But I guess it’s probably not a good idea to share it with us - otherwise this doctor will have one million new patients all wanting to see him 😅
I live in Australia and would love his name i would travel over there to see him!
Oh Jaquie, I am so happy for you! How fantastic to find such an excellent doctor!
As for accidents in hotels, as a former housekeeper at an inn, please don't feel badly about being sick. It is really not a big deal. It was good that you mentioned it to the front desk so that the housekeepers could be prepared, but I have seen way worse in rooms, and definitely not due to illness! 😝😉
What amazing news!!
It’s so important to have a doctor who understands your issues and works with you to find relief in certain areas of your issues where other doctors have failed to help. Almost like “seeing a light at the end of the tunnel”
Have a great week
💜 I am SO glad your appointment went well!!!
I’ve been following you for awhile and I’ve been hoping you’d get more answers as to why you have so many chronic conditions. I didn’t realize you’d done genetic testing before but I am so happy you finally found a doctor who is experienced with complex cases and who isn’t just treating the symptoms of your conditions. And also a doctor with a great bedside manner who doesn’t see his patients as just a number but as people who need answers and treatment. So glad you are getting somewhere and starting to feel better!
Yay! I’m so excited for you! I’m so happy you were able to see this new doctor. 🤗💕
This sounds hopeful, Jaquie. You look better which I'm happy to see. It's so good to find a doctor you can trust. It makes such a difference. I have a good feeling about this doctor. Good luck!
Terrific news!! I'm praying this doctor can really help you. Sounds like you're off to a great start.
💙💚❤💛🧡💜
Jaquie I have to tell you, even when you're not feeling well, you always look beautiful. Glad you're beginning to feel better. I really enjoy your channel so much!
I found this video very interesting. I'm so glad you are getting the help you need. Sounds like a great doctor.
Oh, smart doctors!! ... we need so many more of them!! It all sounds promising, J. As always, wishing you the absolute best. 👍🦁🌹
So happy you are getting better answers. Sending prayers for better health.
Congratulations! I am so happy for you! I hope good things continue to come your way!👍🏼💖
So glad that you were able to see this Doctor at this time. I can almost see the palpable relief you must be feeling in your body language. And I am sure that in a situation where more knowledge=better quality of life you have hit the motherlode here. How validating and reassuring it must have seemed to you to finally see a Doctor who not only understood your condition but was also ready to take on the challenge of helping you and seem unfazed by it all. God Bless you my dear dear Jaquie.
Glad your Drs appointment went well. Keeping you always in my prayers 💗
I am so so glad you found this doctor! That’s wonderful!
I’m so excited to see your health improve because of this doctor’s advice and guidance!
It's so good to hear that you found such a good doctor and that you're doing so much better! :-)
Awesome news! I pray that this leads to a better quality of life for you!
This sounds so great. I hope this helps with your exciting new move to your new house. Just remember that moving is exciting, but very stressful. It took me a year to feel comfortable in my new house. I was so excited; it being my first house. My sons could walk to school, it was amazing. I can’t tell how depressed I became. It was strange that my dream came true, then depression set in.
I'm so glad you've found someone that is giving you hope for significant improvement :) xxxxx
Ativan has been a godsend for my flares - I hate it too, but when the pukes won’t stop, it’s huge help!
Yes!!! I’m so very happy you are feeling positive ! I
Hope one day you will
Share his info with us .. I am in Tampa as well and would be happy to make the drive ..
So glad that this dr is willing and know a lot about your diseases and it onward and upwards. God bless
I'm soooooooo happy for you Jaquie!!! Yea, finally a fe answers! Blessings to you. Love, Grannie Annie from Maine
So glad for you Jackie!!! It all seems to be pointing in the right direction for you!! God bless this Dr and may guide him through your treatmemt
So happy for you, great job finding a good doc, the sad thing is most doc should know more about this but too many docs just want a textbook patient, sad really. Did this doc have any suggestions for on the road foods as you go through these changes? Keep sharing = caring, continued prayers and blessings. Clearly this doctor is evidence based which looks at research, clinical expertise and weighing in the patient's needs. May the Good Lord continue to provide on your journey, stay positive!
I want to cry major tears of relief; I’m so happy for you!!!
I'm so happy that it seems you've found some answers! I hope you feel better has the time goes by 😘💗
I’m in the process of trying to diagnose a mito disease as well, this is super helpful to see!
Oh Jacquie that's so awesome! Hope is an amazing thing.
It is wonderful to see the light of hope in your eyes
It’s good to see your smile again you look really pretty Jaquie happy cerebral palsy awareness day (March 25th) 💚
I'm so happy you got more info on this!!!
So glad your finally getting better hope you keep improving love you Jacquie your awesome
Traveling is harder for people with chronic problems. I was stationed in Jax and had 2 of my numerous spinal surgeries there. You hang in there, you are helping so many people by your TH-cam channel, but remember that you come first so don’t feel bad if you have to take time for yourself, we’ll be there when you post.
That’s wonderful you got so much hope from this. ❤️
Im glad your feeling better and your new doctor sounds very helpfull
SO happy for you!!!! This is really great news!
I'm happy that you got a Dr. That's going to help you. Good luck. Mary
So happy you found a good Doc at Mayo, The only Hospital I would ever go to for consult or surgery, that’s where my liver transplant Doc, everyone says they give best care, in Hospital too! Thank goodness your feeling better
So happy for you. As a person also suffering with Dysautonomia it can be very tough. Now looking for a geneticist for EDS diagnosis. It’s been such a tough road. But I keep pushing through. So very happy for you.
so glad to see you feeling better. because a happy jaquie makes me happy. just something about that smile. 👍😀❤️💪🙏👏
🙌 Praise God …🙏 Answered prayers …
Not only are you blessed by God; you too are highly favored by our Awesome God !! Keep facing forward on your journey. I admire how you have incorporated that you are a Christian out in your videos. I enjoy watching your adventures. And, oh yay…do you think I’m the only person who waves back at the end of your videos? 🤗👋
heres hoping all of this works for ya Jaquie, good luck!
Glad to hear things are getting better! Did they give you any details about what your gene your mitochondria mutation affects? I'm a biology student and mitochondria disease is very interesting to me.
So happy for you Jaquie, will be exciting to see any results!
Idea for video: a run through of all the doctors that you have! Not their names but what kind they are, if they consult with each other, what do you do if they give conflicting advise, etc!
@chronicallyjaquie I’m really happy that you went for another opinion it’s really great you found a really amazing geneticist. I hope that when I my second opinion appointment comes up that the geneticist is as amazing as the one your describing!!
Was misdiagnosed at Mayo a while ago..ultimately led to a couple of years before effectively treated. Great you've found a knowledgeable Dr . Hope you continue to improve!
How did you first get diagnosed with Mito? I’m so glad you have a great Dr. who can help treat it better.
Wishing you long term relief. You deserve it.
Happy for you!!.. You're looking so much better and relaxed already!!..
your colour is sooo much better. Glad that you are feeling better
I'm so glad your appt went well! I get carnitine addedl to my TPN and D-10 to keep my sugars up and treat dehydration. Both help!I think I recommended asking for marinol when you were having pain clinic issues. If it helps with gi stuff enough to go off the mj, you can get to the pain clinic and get help with the pain. Keep us updated!
I'm so happy for you! He sounds amazing!! Yeah everyone's journey is unique!
So happy you found a doctor that feels like the right fit!
So happy your appointment went well!!!
So happy for you,keep moving forward.love you guys.
Good doctors make ALL the difference! I’m so happy for you ❤️
Hey jaquie so awesome u found a good doctor and I have found good doctors too
So glad they are able to find some new medication and better treatments for you. Glad your flare is over too. They can be miserable. Good luck with the new treatments.
Glad it went well. Good to know info. Too! ❤❤❤
You mentioned bringing your records with you. How often do you order your records from your doctors? I also have a medical binder and have been trying to figure out that "sweet spot" of not ordering them too often but still keeping them current, so I'd love to hear what another spoonie does. I'm so glad you found such a wonderful doctor! :)
I also have a homozygous mtDNA mutation (in the ND5 gene). The one thing that got my doctors on the road to diagnosis is finding my mitochondrial disease (diagnosed at Mayo in MN). I have GP, CIPO, CVID, (plus asthma) Addison's disease, Dystonia, Epilepsy, Hashimotos and found out I also have Factor V Liden end of last year after I got DVT in my neck and a PE. I've been on TPN for six years and tube feeds for 8. My TPN cycles 12h and I get D10 1/2NS for 4-8 hours a day. I would watch out for reactive hypoglycemia with the D10 (part of the reason I am on it is because I get hypoglycemic but my worst lows are when off them). If you doctor will allow you to use the TPN function of your pump and cycle you up and down over an hour it does help. I just got paired with my successor service dog in October and she was also taught glucose alert for that reason. Jake my reitred dog who still lives with us did not have that training so I call Dakota my "service dog 3.0" since she is mobility support, epilepsy response and glucose alert vs Jake who doesn'nt do glucose. :)
I am so happy for you!!
Yay! Glad you are feeling better.
I'm so glad for you! And, I also learned a thing or two, like carnitine :)
So happy for you that you have found such a
knowledgeable and proactive doctor and you have already felt positive effects. So, so happy that you are so happy. 🌸🌷🌺🌸🌷🌺🌸
🌷🌷 xoxo Jamie and Sable🐶 🌷🌷
Yes they give it to cancer patients
That is wonderful for you! I’m on the journey of trying to get a diagnosis of connective tissue disorder whatever it may be. Because you have shared your journey coupled with a few others I finally got diagnosed with POTS. There has been a suspicion of possible EDS or Marfan but nothing confirmed yet.
I recently was in the hospital and they found 18+ Tarlov cysts (cysts on the nerve root filled with spinal fluid) all down my neck and thoracic spine. It is highly unusual to find more than maybe a couple at most! I have an extreme and two part of my spine haven’t even been scanned yet which is where they are most likely to be! To have such a number is typically indicative of a connective tissue disorder.
All signs are pointing to that so we shall see where this journey continues to bring me.
As odd as it is to say...I've really enjoyed watching your health improve Jaquie! Compared to your earlier videos, you look so much better! Thanks for the great content and education! As someone who's perfectly healthy for the most part, I like watching your channel to learn what other people have to go through and to understand it in a different light. If I ever see you and Harlow in person (highly unlikely as I live in Ontario, Canada), I'll make sure to say hi and give Harlow all the pets with my eyes (only with the eyes, but no eye contact with her! I will not distract the beautiful Hippo!).
I’m at Mayo Clinic in Minnesota right now to get opinions on whether or not my colon needs to be removed because of chronic constipation. Glad you found some answers. I’m still praying for the same for me.
If you haven’t already, check out mollyollyostomy on instagram, she had a similar issue to you.
Yay so happy for you!
Hi Jackie. I'm on d5 weekly!! Tried Marinol but made tachycardia worse. I was also on a compounded medication called ABH (mix of Ativan, Benadryl and Haldol)! I have gastroparesis, mast cell, EDS, and Autonomic dysfunction also.
Praise the LORD!!!!! He sure was an answer to prayer! I am so excited for you!
Info dump: Carnitine is a molecule that allows fats to enter mitochondria to be broken down, which is important b/c your primary energy source is fats when you're resting or lightly exercising!
Despite your original wish, it sounds like it was a good thing you presented in a flare.
Keep it up. God is with you . We are with you
I'm heading to Mayo Clinic Jacksonville to see my new cardiologist, would it be possible for you to tell me the name of this genetics doctor? I saw one at Cleveland Clinic in Ohio, but that was 7 years ago and I still don't have a diagnosis.
Ativan is amazing, I totally get the not liking it but it does wonders for nausea but also can help calm the nervous system (not even for emotions but just in general) which can allow for the body to allow other treatments to really take hold
I take Ativan for the same reason. It really helps me.
My mom takes Levocarnitine for her Muscular Dystrophy, but she has to take liquid form cause tablets don't have a high enough dose and because her body won't absorb it without a special fatty acid she has to take along with it.