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Changing GI doctor at Mayo Clinic
I've had GERD for 15 years-and it's been controlled with PPI's. A year ago in November-overnight my world changed and I started getting all kinds of new symptoms I've never had-a lot match LPR symptoms, I've now learned. I was able to get into Mayo at Jacksonville-which is 5 hours away from me. Since March I've been back and forth several times and had a ton of testing done. My GI dr is Dr F in GI and she's an actual well known doctor there, not a PA or NP. I've made a ton of lifestyle and food changes on my own since learning about LPR and believe that's what I'm dealing with. She has only pushed medicine at me and requested testing. She's never asked about diet/food/had me tested for any food things, etc.
She doesn't agree that I'm dealing with LPR and says Mayo doesn't recognize LPR because it's so 'new' and there's not enough research behind it. Even when I've given her info and discussed what I'm going through-she disagrees. I've also had 2 colonoscopies in a short time frame at her request and she wants to another in March because she said it's not thorough enough. However, the dr who did the colonoscopy at Mayo said everything was fine and I did not need a repeat for 5 years. The GI dr told me she wants me to start taking Milk of Magnesia, basically for the rest of my life, even though I'm having bowel movements daily. She thinks I'm still constipated and that's what could be causing issues. She has NEVER once talked to me about food or lifestyle. In fact, when I discussed with her that I was trying Dr. Aviv's acid watcher diet, she laughed and said it wouldn't work. I also hired a private dietician who specializes in GI health on my own and she again laughed and said it was worthless. At my last virtual appt the dietician requested to be at the meeting and she was-but the GI dr was so rude to her and wouldn't acknowledge her at all. She's rude to me as well, condescending, and I feel uncomfortable to bring up anything.
Just yesterday I went on my own to my local ENT about my LPR symptoms and he talked to me for a full hour about everything and was SO supportive! He also acknowledged that LPR was very new in the medical world and he said I'll tell you what I know and be honest about what I don't know. He said I was the most knowledgeable patient he's ever worked with and really supported everything I was doing.
I feel like I'm at a standstill with my GI dr. She's wanting me to have a 3rd colonoscopy that another dr at Mayo said I didn't need (all in a 6 month's time frame), she's not supportive or acknowledging anything I'm doing, I don't agree with taking milk of magnesia daily for the rest of my life, and now she's just pushing me off to Rheumatology because she doesn't have an answer-even though my symptoms are clearly pointing at LPR. I can't go to anyone in my local area-I have gone to the 3 GI dr's in my area before Mayo and they are useless.
My family and my gut tell me to ask for a different GI dr at Mayo. I don't know how that works, or if they even will. Also, she's a dr, not a PA or NP, so I fear getting someone so new that knows nothing. For example, the ENT I've seen at Mayo is a NP and is supposed to be working with an actual dr on my case, but she's not-and her testing and advice has been useless.
Should I request a different dr? How would I go about doing that, if I do?
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Hi @melindanorman, I'm sorry to hear that since posting your update in February https://connect.mayoclinic.org/comment/1009374/, you remain on the quest for answers. This must be exhausting and frustrating. What fortitude you have to travel and seek care at a teaching hospital, including submitting an appointment request at Mayo Clinic in Minnesota.
In your original post, you talk about having unmitigated pain:
- Stomach pain undiagnosed for 3.5 months https://connect.mayoclinic.org/discussion/stomach-pain-undiagnosed-for-3-5-months/
I'm wondering if you have considered a pain rehab option and explored central sensitization syndrome. @rwinney and other graduates of the Mayo Clinic Pain Rehabilitation Center explain here:
- Central sensitization syndrome and treatment?
https://connect.mayoclinic.org/discussion/central-sensitization-syndrome-and-treatment/
See all CSS-related discussions: https://connect.mayoclinic.org/search/discussions/
I hope this might open another avenue of possibility for you.
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6 ReactionsHi there @melindanorman. I'm sorry you've had poor experiences and are frustrated. It must feel exhausting traveling to different teaching hospitals and feeling like you're coming up empty. I very much have empathy having gone through my own stuff.
I have a question for you... from all of your experiences and travels, what health conditions have been ruled out? It's helpful to narrow down what you don't have while chipping away at the process of finding out what you may have.
Have you been able to research your symptoms? If so, what are your feelings about your body and what you're going through , are you searching for any specific "new things" or "different treatments" (as you mention) from doctors that you think would be helpful in symptom management?
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4 ReactionsUpdate 2: Last update was in February. It is now November and I still haven't been able to see a GI dr for my condition. I live 5 hours away from Mayo in Jax in a 'small town.' I've tried to see multiple local GI dr's only to be told they won't see me because I've been seen at Mayo. I've been told, "if Mayo can't help you, how can we?" Or, "it seems like they've done everything they can, there's nothing more that can be done." I've been refused even getting an initial appointment. It's been over a year since I was seen at Mayo in Jacksonville. I have an Aunt who sees a long time doctor at Mayo in Minnesota and she was going to reach out to him and ask for any suggestions. Everything I've read online says that if a dr drops you-they are supposed to help you get care within the next 30 days-and Mayo didn't do that. There is still a ton to be done-I had testing scheduled and on the books when Mayo dropped me. Local dr's have told me to try to go back there because they can't help. I haven't reached back out to Mayo, yet, because I'm not sure what route I want to take yet. It's hard when you send medical records to a local dr-wait 4-5 months for an appointment and the day before you get a call saying "the dr looked over your records and doesn't feel like he can help you." It is a total waste of time and so frustrating. The Office of Patient Experience wasn't helpful to me at all-they dismissed everything I had to say and only covered up how the dr treated me. I don't understand why a simple switching of a doctor is so hard. In one of the letters from the Office of Patient Experience they listed 4 agency's I could reach out to-but all of them are massive institutions that just make sure hospitals are doing their jobs-they are not going to help me get a dr's appointment. I just don't know where to go from here anymore.
So sorry this happened to you. Unfortunately I've had similar experience at Mayo GI at the mother ship in MN. I'm now seeing integrative medicine MD at another large hospital system in my state. Hang in there....it's so disheartening when Mayo does this to people and I'm so sorry this happened to you.
Have you tried to modify your diet to treat your Gerd? Do a search for "Norm Robillard, acid reflux" and check out the interviews/videos. He is a microbiologist who went on a low carb diet to loose weight and his acid reflux symptoms went away. He figured out his acid reflux was caused by eating too many carbs and has developed a diet to get rid of the acid reflux symptoms. There is a book on the subject and an inexpensive app to help with the diet. It has been a lifesaver for me along with the FODMAP diet. Just a thought, this may help you. Mainstream doctors tend to treat the symptoms, not the cause.
@melindanorman
Sorry to read what you’re going through with your doctor. It’s vital to be on the same page. Clearly you’re not. It seems a no brainer to change from your current GI doctor.
https://my.clevelandclinic.org/health/diseases/15024-laryngopharyngeal-reflux-lpr
It may possibly mean moving to another hospital altogether that does recognise LPR (if Mayo doesn’t and it’s not just her). It seems you need a GI doctor who does recognise LPR and who is open to using holistic integrated care such as diet.
Good luck finding answers and feeling better 🙏
https://my.clevelandclinic.org/health/diseases/15024-laryngopharyngeal-reflux-lpr
Hi Melinda,
First I was told I had Gerd, then LPR, but what I think I have ( a lot of reading on my part) is SIBO. Please read the symptoms on SIBO, you really have to first determine what you really have, as the treatments for each are vastly different. If you end up having SIBO, reach out to me as I have some experience here and may have some worthwhile suggestions. I would be down with my Mayo doctor if I were you…time to move on.
Randy
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2 Reactions@rsy. How very hard it is to find out exactly what’s wrong and so find out what the appropriate treatment is. So important to have a GI doctor who is prepared to look at all possibilities - including LPR - and rule out what’s not applicable.
Hi,
I agree. Have the doctor look at Gerd, LPR and SIBO. You should read the symptoms of each yourself and try and help your doctor but identifying which one you may have according to the symptoms you are experiencing. It’s along process and it will take awhile time wise.
Good luck to you!
Randy
Im having the same problem. I got a mcrp from prenuvo showing cbd dialation of 8mm and pancreatic duct dialation at 4mm. Did have result read till end of march start of May tried for Mayo May 29 had a gi consult with HA. Day after consult tried to switch. She hadn't read anything in my file, I had sent alot of poop pictures up to day before. She asked me how my bowels movements had been. I was shocked, then I just let it out and said I think I have pancreatic cancer. My stomach is huge pot belly like, I look 7 months pregnant. I have all the dymptoms and the double duct sign. The DR. Said HA at consult she thought My digestive issues were from doxycycline. I immediately knew she was not the DR. For me. Next day I called Mayo asked to switch. Called back a few days later was told I cant switch just give her a chance. This caused extreme emotional distress.
Have tried 4 times now to switch DR.s . All the whiel having to do all my testing for suspect pancreatic cancer with her. She does not explain anything or even reply.
The DR could release you as a patient I heard, so they are affecting you by keeping you, it is retaliatory, which seems to be a theme that just surfaced in other areas just last week. She put me at the back of the line on images, setting it for August 18th with a colonoscopy. She didn't order a test originally that looked at the pancrease. I had to ask her at consult for that. I had to fight call ever day to get my image moved up then moved up again. I had to call and call and call and complain just to to get an eus. Now just a paper in my portal no real explanation, no opinion, other then to quit smoking. I asked for need and want a fecal elaste test, and pancreatic cancer test, and just need her signature for the Avantec test been waiting since end of last week. No response.
Because they wont let you switch DR.s I have limited my other care and reached out to other well know institutions. Set up appointments out of state for August/ October.
I bought myself the fecal test today $205.00 on requestatest and alymase which I have no test for at all on all the blood work ordered 6 vials of blood. No alymase or Lipase alymase ratio. But I know x3 I dont have Celiac s DISEASE, there favorite thing to test for. Iron binding not good, iron is low, bun is low, nuetrolphis high...high ldl, high hdl, borderline on alot of the blood. I got myself a urine test a ct from Kingman. I started bleeding vaginally heavily for about 9 days . Urine came back Billirubin in my urine!!!! Blood in urine, protien 30ml, ketones in urine, urine is amber color. I have floating poop, undigested food, Constant upper right at rib pain mostly after eating a little sharper.
Double duct sign, pancreatic duct abnormal narrows at smv vien, and disappeas - reappears. So what does that mean? Do I have pancreatic cancer? I have not been told either way. Im sitting there with nurse before eus, she's like this will be great you'll have some answers. No Answets, no opinion, nothing. Ive have not been giving a diet plan, no diagnosis, no opinion, and no medication not even pancreatic enzymes.
So I've been forced to help myself, got bcp-157 peptide, pancrease peptide, methylprednisolone 4mg, ordered inside tracker, cancergaurd, genomics, and called avantec for the pancreatic cancer early detection test $1500.00
Have the kit on the way, but cant get her signature on it.
Im so angry.