My Mayo Clinic Experience 

I recently found your channel and oh my gosh, I have never related to someone more about health things. I have had a chronic illness/autoimmune issues for almost ten years now and it's been so hard and frustrating still even after all this time. Your sweet spirit encourages me to keep fighting and trusting in His goodness, even when physical healing isn't happening when/how I want it to. Praying that you receive complete healing! So glad I found your channel!

I just started watching some of your videos, and am now in tears. I have been dealing with so many similar challenges, all of which started a year ago after having mono. Obviously everyone is different, however, you have given me hope, and in a way validation, of what I've been feeling and going through. My mantra for the past year of so has been that this is my cross to bear, I know that the Lord is working, and I can see Him working through you. Thank you for sharing your journey.

Hi, I've been to Mayo twice. I've stayed at the Hilton Gardens and Kahler Grand, with the Mayo discount they're still very expensive. Was wondering where you guys stayed? Glad you are getting answers. Wouldn't be great if all health care was run like Mayo, very impressive.

Happy you got some answers It's great to see how supportive James is as well Blessings to you both You will be healed! Psalm 30:2 I called for help and you healed me🙏🏾

Praying for you Mandy!!! Love watching you overcome your obstacle. Your videos are truly inspirational for all of us who suffer from some type of ailment!!!!

I too was diagnosed with fibromyalgia at The Mayo Clinic in Jacksonville, FL. I know somewhat of what you feel. Best of luck to you. God Bless. Happiness, Teresa

I'm so glad that you made this video! I am also going to the Mayo clinic in a month to get my own diagnosis and I find myself watching your video every time I get nervous.

I just came across your channel after it being mentioned at life church. I have functional neurological Disorder which shares a lot of symptoms with ME and Fibro it adds for me involuntary movement tics motor and vocal and dystonic storms and seizures. It's been 3 years. In those 3 years I have grown so much closer to God and I just started a wee blog. Just saying Hi from Scotland and you are not alone.

Praying for you! God is good! Thankful for the answers you got!! Your dad made me cry talking about you at church last weekend!!!

Thank you for sharing your experience. I was at Mayo last week and just starting my own difficult journey. Take care.

I am so glad you had such a positive experience at Mayo and got some answers!

I woke up on March 3 with a different life and in a body which feels so unfamiliar. The last three months have been an emotional rollercoaster full of so much uncertainty and frustration. After going from specialist to specialist and being told that everything checks out fine, I got an appointment with the Mayo Clinic. I found out a little over a week ago that I'd been accepted for an August appointment. It was seriously one of the happiest moments of my life because I want answers so badly. Then, I found out 3 days ago that it has been moved up to this coming Friday. I'm so glad I don't have to wait two months because I've wondered each week how my body can even make it through another week. When I got my Mayo account and app set up, I saw that my schedule ends with fibromyalgia/CFS education. Soo... I started looking into that and found my story in those of so many others. I'm fairly certain at this point that my diagnosis will end up being CFS. It's hard to wrap my head around. I'm trying to figure out how my life will look, because I probably don't have something for which I can just take a pill and get better. Sometimes I think about last Summer and try to remember the last time I rode my bike, then I cry... and then I try to think about something else. Anyway - I found your Vlog and I am so happy I did. You have given me such comfort. I appreciate your honestly so much. I feel like you and I have a similar ability level and it's been good to see someone who seems to feel like I feel, but has kept her beautiful spirit. Looking ahead at your videos, I think you've made a lot of progress, but I'm not sure how much or if it has been consistent. Regardless, it's wonderful news! I'm not mentally at the place to start thinking about how to get better. Right now, I'm just trying to make sure I'm doing what I can to not get worse. (and of course, I don't even have an official diagnosis yet). But, I just wanted to thank you so much for what you share with the world. I watched "Unrest" last night and got a little scared about what my future might look like, but I try to stay in the present and take it one step at a time. Your story has helped me to bring myself back to that place. Thank you. p.s. from your comment and others I've read, it seems like Mayo isn't the best at knowing what to DO with someone once they diagnose CFS. I'm glad to know that going in. I am thankful to go though, because otherwise I feel that I wouldn't be SURE about my diagnosis, you know? Going from specialist to specialist until someone says "CFS." I would always wonder if something had been missed and I was just thrown a diagnosis. At Mayo, I'm hoping that I will be able to be confident that they have ruled everything else out. It is very helpful though, to know that I don't have to take all of the info they give after the diagnosis as the most currrent or valid information available.

I got accepted to Mayo and am going in November! That’s how I came across this video but I first found you by accident. I am from Oklahoma too and I have listened to a lot of your dad’s sermon after I accidentally funny enough heard him talk about your health struggle! And we are the same age :) stay strong Mandy! Thanks for the experience video ;)

Hi Mandy, I live in MN and I recently came across your video after watching a video about Fibromyalgia from the Mayo Clinic. I’m 22 years old, and I finally got my diagnosis of fibromyalgia along with CFS a few weeks ago at the Dan Abraham healthy living center - fibro clinic. What you’ve been dealing with is what I have been since I was 14. I never thought I had this condition, as im young and also a male. When I went in I was expecting the run around again, but I was I told that I have every marker for it. Little did I know all the tests I’ve done over the years have ruled out the conditions that mimic fibro. It’s good to know I’m not alone in this process and I hope you’ve been doing better since your DX.

I have the same issues! I’m glad to have come across your channel! I use medical marijuana rick Simpson oil I don’t know how you feel on those issues but my pain has been relieved so much from that! I swear by that product. You should at least look into it

I really hope you come back to RU-vid one day. Your content helped so many of us who struggle with chronic illness and showed us the love of Jesus ❤

I'm from Australia and am so grateful I found your page. It's so important to surround yourself with a positive network/community and it's nice to relate to others. After one and a half years of shutdowns and unexplained answers with ongoing symptoms myself, I doubted myself and started second guessing. I was finally diagnosed with endometriosis and adenomyosis which is incurable and chronic illness based too. My mother in law also has fibromyalgia and it's horrible to see her struggle. But at least having answers, we know where to move from there. You are amazing! Sending love ❤️

Thanks so much for sharing your experience, its really interesting to see what actually goes on at The Mayo Clinic. I'm glad your on the road to getting some answers and feeling better!

And through all this you keep a smile on your face!! You are so strong!! I wish you the best! I hope you get to manage it! I really hope you get to recover!

I'm so grateful you left with some answers!!

Just a thought. I'm diagnosed with hypermobile ehlers danlos syndrome (hEDS) and over 50% of people who have been diagnosed with chronic fatigue and fibromialgia actually meet the criteria for hEDS.

All that food looks AWESOME. Glad you got some answers, I can't remember the exact Bible verse, but I know it goes something like this --"though my heart may fail, the Lord is my strength and portion forever". Just wanted to send a bit of encouragement, I know it gets tough.

I am so glad you at least know what the problem is! I hope that you are able to find ways to manage with this and live to your fullest! 💖

Seeing this makes me wonder about my own self & how I've been feeling these past few months...like today i don't have the energy to do anything..good bless you mandy..

So glad to hear you have some answers and can start to figure out the next steps. Love watching your journey and I think a lot of people can benefit from what you are going through!

Hi! I've been following you for a while (since your dad mentioned it as I go to LifeChurch in Edmond). I have been 'diagnosed' with multiple auto immune diseases over the last few years from local doctors. Some I can see definitely line up with my symptoms (Lupus) and others seem like they just wanted to label me with something and put me on crazy expensive drugs with horrible side effects (including infertility). After following you, I'm thinking more and more about possibly trying something like the Mayo Clinic but the cost and fear of still being told I just need to take these drugs with horrible side effects is holding me back. I know all insurances are not the same but did they take insurance for all the testing you completed and was the out of pocket astronomical? I look forward to continue following your journey and hope to get answers for myself as well. Jordin

Has anybody ever mentioned mast cell disorder. Not only that have you look into EDS.low Collagen, show signs round chin , connective tissue disorder which all I wrote happen together

I'm sure it's such a relief to finally have a diagnosis. While it sucks to be sick with a chronic condition, for me it was validation that it wasn't all in my head! I have chronic pelvic pain from adhesions because of a ruptured appendix and several abdominal surgeries, but it took a long time to get that medically figured out. Months of pain and I started to second guess myself...once you have some answers it's like you can breathe easier and focus your energy on how to move forward.

Mandy, Sorry you have to deal with this, but glad you got some answers! Glad your experience in Rochester was mostly positive (Mac's restaurant has been a local favorite here in Roch for decades!). Also, on a side note.. It is UNFAIR how great you look right out of bed! James is a lucky dude!

This video is very insightful ! Thanks for opening up about your experience . Your husband seems great !

Thank you so much for videoing your experience. It's great to see and hear the patient's point of view. I am experiencing similar issues as yours. I am waiting to hear back from there to see if I've been accepted. I hope you're doing better.

Are they from Norman!? I noticed his shirt and her comment! I just recently moved to the area and waited and waited for the Norman life church to open then found this video!!! she's awesome!! So strong prayers for you sweet girl!!

Finally somebody understands me. Thank you!

Hello, I'm a nurse ( on my way to work at Mayo) I would STRONGLY recommend getting the book "The Plant Paradox " by Stephen Gundry M.D. you will find out what's up with Cashews and a whole lot more, it's cover to cover non-fiction nutrition. He has an office in Palm Springs and there is a facebook page and youtubes. You won't regret delving into this. Best wishes.

Hi, I just discovered your channel. I am actually going to the Mayo Clinic in 2 weeks. Your video really helped me feel comforted in my decision. I love that you are brave enough to share all about your story. I also have a RU-vid channel and slowly have started telling my story. Now I am watching some of your other videos! Yay!!

Your Dad's LC plug brought me here! Subscribed for youtube vlog ministry!

I love your eyebrows. Blessings and manifestations of His healing through you!

Love your positive vibes

A researcher needs to do a study on shallow, rapid breathing especially during sleep. It may be a major cause of high blood pressure. The researcher should observe people from childhood to adulthood to correlate breathing patterns to blood pressure.

Wow. I have both too!! But how do you get motivated to push through and do that cooking or even getting dressed and makeup

Thank you for sharing you're experience! I will be heading to the Mayo Clinic October 9th and am praying for some answers. Your video was one of the first ones I watched when I found out the Mayo Clinic accepted my application. I had no idea you were Craig's daughter until I saw the LC fb post the other day! Thank you for helping those of us struggling with their health not feel alone! Btw, have you heard of the documentary that just came out on 9/22 called "Unrest"? It's a documentary on this woman's journey with CFS.

Hey y’all! Fellow Okie here! Glad y’all got some answers! :D

Did they test you for lyme disease/tick borne illnesses to rule it out? I have tested positive for lyme four times, but doctors keep telling me it is CFS/ME without running additional tests. Like having lyme disease is illegal. It's extremely frustrating. Most of my tests come back normal, but when one doesn't, the doctors don't take those tests seriously. I have been sick for almost 20 years now, since my early teens, with few answers.

Macs closed! 😢 we just moved to town and missed out

I live in Rochester Minnesota

Girl please please check into EDS.

Great video. Did they put you on any medicine for the fatigue or what did they recommend? I have severe cfs/me as well and no diagnosis yet. Your videos really help alot thank u so much.

I go to the mayo clinic in Rochester every year

Hello, my 13yo daughter is experiencing abdominal pains and after several doctor visits she still is ill and we nor the doctors know why. We now have an appointment with Mayos. She has had the following tests (HIDA, 2 endoscopys, 1 colonoscopy, MRI, blood work, urinalysis). What did you do to previously diagnose and treat your situation? Any resources you would suggest? Any financial resources you suggest? Thank you for your video. Hopefully you are feeling better.

Hi Mandy! I've been watching your videos for a while and love your content. Glad you're finally getting answers! Your journey has been inspiring to watch. There's another RU-vidr that I watch called Meg Says and she also has M.E. and has had chronic fatigue for years! She's super positive and has shared a lot about her journey with the disease. You might check her out!

Oh no! I used to pass out getting blood and eventually you become so immune to it, you numb out so hard.

Thanks for posting this, what a great idea. I have been seeing doctors in LA for 10 years for serious GI and neuro problems without answers, so I just got to Mayo (from CA) 2 days ago. This is quite an adventure, considering they are having coldest cold-spell in a decade. LOL I chose to stay in a kitchenette hotel room so I can control what I eat and also save $ (Centerstone at Soldier's Field with free shuttle), but downside is walking out into the cold when I go to main building. There is a great store nearby called "People's Coop" with lot of healthy choices, including Gluten Free Products. Like you, I just want answers so I can move forward in the right direction--and joining support groups would be SO helpful too. God Bless and beset of luck with your journey with a chronic illness. No one truly understands except others with a chronic illness. But God says he never gives us more than we can handle. BTW what hotel you stayed in? Kahler Grand looks SO convenient, but I wanted the full kitchen and only $100 a night.

Please answer this question for me, do you have to be off beta blockers to get tilt test, to get correct heart rate. Thank you

I have Ménière’s disease I hear the Mayo Clinic in Arizona can help is it a good facility?

I have fibromyalgia also and I am only 15 :/ and there is something wrong with my stomach also and I am going to be treated at the Mayo Clinic and for fibromyalgia I recommend the Pain Clinic there to help deal with the pain

Thank you for your video! I am going to be getting an appointment at Mayo soon and I was wondering how long did it take you to get in? And how long did you have to stay? God had put you in my life! Thank you for your videos!

happy you are taking the steps to get better praying for you i hope this question doesnt upset am sorry if it does but will you ever be able to have kids with having all that pain?

I wanna get help with my gastroparesis and acid reflux I have acid reflux so bad I need help with it I hope i can go to Mayo Clinic

Man I was looking forward to macs but it’s closed and the place it was in is for sale 😕

That festival is called Thursdays on firts

Hi Mayo is really expensive?

I get it... getting a diagnosis helps

How does a person like myself, who is about to lose employment hence insurance.. Get to Mayo Clinic to find more answers?? I have Fibro, but before that lived with multiple mental health challenges. And now I am finding more and more issues pop up. I'm ready to just GIVE IT ALL UP!

How did you feel about their classes? I thought it was propaganda. The wouldn't talk about things they didn't deem there was enough studies for but then when I pushed them on their claims they admitted a lot of the claims they were making about Central sensitisation and their techniques to fix it were just untrue and they were not following up with people to back these claims. Maybe it's different for you but I learned absolutely nothing new from them and was suspicious of their propaganda. Complete garbage.

Hey I’m in okc and debating going to Mayo Clinic for my chronic fatigue, wide spread pain, and a few other things. Would you recommend it? How did you get it started?

Have you been checked for helicobactor pylori aka hpylori?

I go to the Canadian honker that place is yummy

you are as beautiful as a flower,I hope your husband knows that. I also suffer with cfs/me ,whatever it is. I am a construction worker,and it has cost me alot of lost days,lost money. I hope they get to the bottom of this soon

Hi Mandy .. the videos wonderful

Another thing MARY HAD TO BE MY FAMILY MARY PORTER

With your dx's of CFS and Fibromyalgia, have they suggested an alteration in the foods you are eating or have they found that your diet (lifestyle) is suitable? So glad you are on the road to getting answers! Just an extra super question...did they (Mayo) say that the Fibromyalgia resulted f/ the Mono, as well?

I would seriously look into ehlers danlos syndrome, pots, and mcas.

Fibro is just a word for symptoms that is caused by something.

I live in Rochester MN

And you’re right about our local mall pretty lame

CFS/ME / Fibro is more cognitive based no? It’s the base line principle of DNRS etc... Over achievers, perfectionists, scared childhood trauma seems to be major roots. Dr John Sarno picked up and expounded on such.

Hello, Fellow Okie!!! I'm in the Southwest :)

MACS CLOSED NOOO

Please tell me you got a tilt table... I’ve only been into what I believe to be is chronic fatigue syndrome based on the diagnostic criteria. I’m waiting for the follow up but on the tilt table my blood pressure dropped dramatically and didn’t come back up, based on this I most likely have NMH. If your not doing it already, try an abdominal binder, it has made life somewhat doable, albeit miserable.... yes there may actually be a magic pill to help (pills) fludrocortisone and Midodrine. The brain fog is your head not getting enough oxygen when upright, the fatigue is a result of that is well, the P.E.M is from your muscles stealing what little blood you have from your brain. Correcting the dysautonomia as much as possible should alleviate your symptoms whilst you attempt to “reset” your hpa axis, which is ultimately the goal, which is why some find DNRS helpful

Thank u for this video your paper showed me the phone number I need to call, thumbs up

The Mayo clinic has a very poor history as far as Chronic Fatigue Syndrome is concerned - they still recommend therapies based on the Pace trial that has been discredited. The Mayo Clinic still takes the biopsychosocial view of CFS - they essentially buy into the British model that the disease is a result of the patients erroneous illness beliefs perpetuating our disability. I would avoid the Mayo clinic like the plague. They do perform walletectomies pretty well though.