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Mayo Clinic Rochester, MN (Very Long)
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Hi everyone,

I began my journey with CFIDS in 2009, but like so many others, it took several years of medical appointments and testing before I was officially diagnosed this month at Mayo Clinic in Rochester, MN. Prior to being diagnosed, I did exhaustive research/searches for doctor/treatment recommendations. Therefore, I am hoping this post may be of some use to those out there who are in a similar situation. I'll provide information about my experience with Mayo Clinic in this post and my experience with Dr. Lapp at the Hunter-Hopkins Center in Charlotte, NC in a separate post.

From 2009 to 2011, my primary care doc ordered every test under the sun to try to figure out why I was so tired and constantly feeling like I was fighting off a virus. You know the story---nothing. Not Lyme's, diabetes, multiple sclerosis, lupus, mononucleosis, etc., etc., etc. Finally, in 2011 I ws referred to my wonderful integrative medicine doctor for what we thought was adrenal fatigue and stared feeling better. However, in Februarly 2012, after bumping my hours back up from 20 hours per week to 30 (I was feeling so good!!), I crashed and in April 2012 I had two seizures. I had never had seizures in my life. As a result of the seizures (both on the same day, one in the ER) I was air lifted from my hometown hospital to Abbott Northwestern in Minneapolis, MN. After doing a CT scan and an EEG, I was told that there was no injury to my brain and that there was no electrical activity on the EEG (at the time of administration) that would indicate an epileptic seizure. It was chalked up to a "non-epileptic seizure." (Read: "possibly all in her head" seizure).

Following that fun day, my integrative medicine doctor and I decided it was time to take things up a notch and see what is really going on. By this point, I was beyond fed up with the medical community (with the exception of my integrative medicine doctor) and my health. I suspected I had CFIDS and was ready to drop everything and see the best CFIDS specialist in the country no matter the distance or cost (despite my lack of income because I finally had to give in and stop working---I was just that desperate). After much research, I decided that Dr. Lapp at the Hunter-Hopkins Center was the best fit for me. However, he does not take insurance (but his office does provide you with a claim form to submit the charges to your insurance company. It just so happens that since he is out of network for me, my insurance company won't cover any of it).

So, that is where Mayo Clinic in Rochester comes in. I went there first because I am fortunate enough to live an hour away and my insurance will cover tests/visits there. So, in an effort to save money, I went to Mayo to get updated tests done, so I could take the test results there and they would not have to be re-done at the Hunter Hopkins Center. Is that considered sneaky or a girl just doing what she's got to do to prevent going further in debt because of this illness? Ok, I digress....

My integrative medicine doctor warned me that he has not had very good experience with Mayo in regard to sending patients there with fatigue issues. I went with the mindset that I just wanted to have updated tests done and I didn't really care if they told me my symptoms were all in my head. I considered the trip a means to an end.

I first met with an internal medicine doctor at Mayo who looked over all my medical records, took my history, and did a physical exam. He was the one who oversaw my "comprehensive evaluation" (Mayo's term), and referred me to other specialists for testing. He surprised me by telling me during my first appointment with him that it sounds like a "classic case of Chronic Fatigue Syndrome" and he even referred to it as a DISEASE. I was stunned. He was very comprehensive and sent me to a cardiologist, neurologist, and endocrinologist for testing due to my history of passing out, low blood pressure, seizures, thyroid and adrenal issues. I spent at total of 7 days at Mayo undergoing testing and consultations.

Unfortunately, this is where things started to fall apart at Mayo. Each of the doctors I met with in cardiology, neurology, endocrinology, did not seem to understand the role that blood pressure, thyroid/adrenal glands/gonads/ovaries (hypothalmic-pituitary axis), brain fog/attention/memory problems play in CFS. While I was grateful they explored for things like coronary heart disease and dementia (and even more grateful these tests were negative), it seemed that the cardiologist, neurologist, and endocrinologist looked at my symptoms in isolation rather than considering them in the context of CFS (which, like I said, the internal medicine doctor I saw my first day at Mayo diagnosed me with. He was the one who referred me to these other specialists and they knew he had diagnosed me with CFS).

Ironically, the endocrinologist (a very kind woman who genuinely seemed to want to help) mentioned that a family member of hers had been diagnosed with CFS and it took several years, but she did recover considerably. Yet, in the same breath she went on to tell me about an article a colleague had published about adrenal fatigue. She even grabbed a copy of the article from the literature hanging on the wall on our way out of the office and handed it to me. I had already read the article months ago when I thought I was just dealing with adrenal fatigue. If you want to read the article, the URL is: http://www.mayoclinic.com/health/ad...

I can save you some time and tell you that basically the article refutes the existence of adrenal fatigue. You either have Addison's Disease (adrenal insufficiency) or your adrenal glands are fine. And that leads me to my concluding thoughts about my experience at Mayo: Right now, their approach is still very black or white when it comes to this stuff and with CFS, it is not black or white, there are many shades of gray. Even though the internal medicine doctor diagnosed me with CFS, the neurologist I saw told me he really wished there was a biomarker for it. Well, we all do of course but they way he said it, I interpreted it (perhaps wrongly) as it wasn't a real illness since we couldn't test for it. Again, black or white.

In the end, I got what I had hoped from my visit to Mayo. I got most of the testing done that I needed knowing I was going to the Hunter Hopkins Center. Plus, I actually was diagnosed with CFS at Mayo, which is the first time I had been officially diagnosed with it. I thought there would be relief and validation once I was diagnosed, but really there was more anger and frustration at how far Mayo still has to come in regard to CFS. I mean, Mayo is often referred to as "the worlds finest medical facility" and yet.....

In many of my appointments, I felt like I was the one educating the cardiologist, neurologist, endocrinologist about CFS and the many medical problems that accompany the disease. I would walk in offices with questions and print outs of research and information for them. I am sure I drove them crazy. With all that said, Mayo has apparently come a long way. They did recognize CFS and actually diagnosed me with it. They also now have a Fibromyalgia and Chronic Fatigue Clinic at St. Mary's Hospital, which is part of the Mayo System. Mainly they offer a course that runs 3-5 days (depending on your diagnosis/symptoms) that provides patient education about FM, CFS, and managing symptoms. Unfortunately, they don't have a website (I called them when I could not find a website and the person who answered the phone thought for sure they had one. Boy, was she surprised when I asked her to do the online search with me that she was telling me to do and nothing. No web site). Also, the classes are full-day classes, which I am not sure how those with CFS and/or FM could endure full day classes for one day let alone 3 to 5. When I asked about this, I was told they take lots of breaks. Again, Mayo seems to be taking steps in the right direction. Unfortunately, they are baby steps.

If you are still reading, I am amazed. :) For those, interested, I will write up a separate post about my experience at Hunter-Hopkins Center.

**Please note that these are my opinions based on my own personal experience and of course others may have different experiences. I am not attempting to provide medical advise or recommendations. I am simply sharing my experience in case it is helpful or useful to others.

Best,
Carrie
Posted on 06/24/12, 12:28 am
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Reply #1 - 06/24/12  1:18am
" I haven't heard good things about Mayo either. There's someone named Ann Vincent who is the go-to person at Mayo for ME/CFS and who recently did a study on the Gupta 'Mind/Body' amygdala training bullcrap, which basically tells you where their focus is. Just more mind/body calm down quit being neurotic and get some exercise bullshit.

Sounds like you did just right though, good job. "
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Reply #2 - 06/24/12  4:23pm
" Having lived in Rochester, MN for nearly 20 years and having been a patient and an employee, I must defend Mayo.

I was diagnosed there in 1999. It was a PCP who saw the big picture and put it together.

Specialists are just that. They have a specialty and a very narrow focus as a result. The internist you saw ordered tests to confirm his diagnosis. Usually you have all the tests and once everything else is ruled out, you can then be diagnosed with CFS if you meet the criteria set by the CDC.

Before I was diagnosed, I went to a long list of specialists. They ordered tests and all were negative. The tests not the specialists. I did run into one older doctor who had the I'm-the-doctor-you're-the-patient mentality.

When I questioned him about something, instead of addressing my question he went on the offensive. He asked me if I worked. I said I didn't but....... That's as far as I got. He then pointed to my history packet and said it was "large" inferring that I was a hypochondriac. I pointed out that I had been a patient at Mayo since my before my daughter was born and, at the time, she was 20. Before he could say anything, I went on to say that having worked at one of Mayo's hospitals I had seen history's that had five or more packets. So my one skinny packet indicated that over the last 20 years I had been healthy.

His residents were behind him enjoying every moment. When I told my PCP, he knew who I had seen. Another time, I saw a resident who kept going out in the hall to talk to her "gray hair". That's Mayo speak for attending physician or consultants as they are called at Mayo.

I told her to invite the other doctor in because it was annoying to have her leaving me. The attending said no. I went to the door and said, "I am the patient. I want a consultant. If not you, then someone else. I work here so I know my rights." I had to reschedule the appointment so I could see a consultant.

Mayo is unlike any other medical facility. Their patient population come from far and wide. I worked on an oncology unit and we would have patients from Iowa and another one from Mexico, and usually at least one from a middle-eastern country.

The culture is very different. I worked for two years at Stanford Univ. Hospital and was amazed at the difference. The doctors were much more casual. The nurse manager of the unit trained at Mayo when they had a nursing school. So she would often ask me "how do they do that at Mayo where everything is perfect".

Mayo is run by doctors. That is very unusual. Most large medical centers are run by a board of directors. Mayo is geared to what the doctors want. Stanford was more focused on teaching and patient care.

We now live in Vermont. We go to Fletcher Allen Health Care which is part of the Univ. of Vermont's medical school. I have had wonderful doctors. I've also had one rheumatologist who should have her license revoked and one ortho doc who was okay but had no personality at all.

There are stinkers in all large service companies. The medical field is no exception. Even the WFMC has them. That's local speak for the World Famous Mayo Clinic.

I gave birth at Mayo. I had knee surgery and back surgery. My granddaughter was born there. I saw it from both sides and it is justifiably world famous.

My daughter went to Johns Hopkins for her undergraduate degree. A lot of her friends were pre-med and applying to medical schools. She asked one of them if they were applying to Mayo's medical school. He told her that you don't apply to Mayo. They invite you. Their average class size is 35. So 35 graduates would be invited to attend medical school at Mayo.

It is an amazing place. I don't know what you've heard beanless but one person does not determine the focus. I searched Mayo's website and Ann Vincent is not the go-to-person. She has done studies on a variety of issues including women's health. She's an internist. Trust me Mayo's focus is not "quit being neurotic and get some exercise bullshit".

There is definitely a mind/body component in CFS. Anyone who has it will agree to that. That's why CBT is one of the recommended therapies to help cope with CFS. That's why stress takes a huge toll on what energy you might have.

Mayo isn't perfect but it is an excellent place for diagnosing and treating anything. The King of Jordan wouldn't have gone to a second rate medical center.

Since I was diagnosed there, I know that they don't tell you to "quit being neurotic'.

Carrie - Have you asked Hunter Hopkins if they will accept test results from another facility? Mayo won't. They'll take them and put them in your file and then have them all done there. I hope things work out for you. You have a diagnosis. That's the Holy Grail in CFS land. Everything else was to confirm that.

Good luck. Also where do you live? Just curious. "
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Reply #3 - 06/24/12  4:32pm
" I looked through all of Ann Vincent's publications and there was nothing about the Gupta method. Trust me Mayo is much too conservative to have a staff member spend time on something like that. She's an assistant-professor at Mayo Medical School and is she did this study it was to debunk it.

I don't know who you talked to but they are misinformed and I doubt they've ever been to Mayo. "
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Reply #4 - 06/24/12  5:04pm
" Me again. Carrie why are you going to the Hunter Hopkins center? Which one are you going to?

They emphasize the mind/body connection and alternative therapies.

All doctors would like to have a biomarker for CFS. It's easier to diagnose which makes it easier to treat.

I went to the center at St. Mary's and it was two days then. They did take a lot of breaks and there was a room that had several recliners in it and was dimly lit. We could go there any time we had to,

Mayo practices very conservative medicine. They don't rush to judgement. They research and review and ask questions.

I've had to educate almost every doctor I've been to about CFS. It isn't taught in medical schools. I see that as my contribution to spreading understanding of CFS. My back surgeon knew about CFS and the effect surgery has on patients with CFS. He also told me to check the internet for the anesthesia protocol that is used for CFS patients.

My brain fog is in high gear. "
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Reply #5 - 06/25/12  12:42am
" I don't doubt that Mayo is possibly the go-to place for anything and everything but ME/CFS, but basically every single thing that I remember hearing about Mayo was that it sucked big time for ME/CFS. It's not just one person, it's pretty much everyone who goes there for ME/CFS and who posts about it online. Here's the mind/body paper with Ann Vincent and the Mayo Clinic Allstars-

A MIND-BODY TECHNIQUE FOR SYMPTOMS RELATED TO FIBROMYALGIA AND CHRONIC FATIGUE
http://www.guptaprogramme.com/mayoc...

It says that out of 44 patients who originally enrolled in the trial, only 21 completed the study- 14 in the standard care group and 7 in the study group. That means that only a little more than 25% of the people in the 'amygdala retraining' group completed the study. Of course this didn't stop the authors from drawing a positive conclusion about the results by not including drop outs in the analysis, which is pretty much standard practice in psychobabble bs studies since patient drop-out is generally regarded as being a proxy measure for harm and/or acceptability of treatment. The fact that the study was done on patients with 'chronic fatigue and/or chronic fatigue syndrome' is a big red flag for those familiar with the literature; usually only the crappiest of psychobabble studies do this.

Regarding CBT helping patients cope, this is one of the biggest misconceptions in ME/CFS research today. While legitimate CBT is used to help a patient cope with their illness, psychosocial CBT in ME/CFS is used in an explicit attempt to try and convince the patient that they are actually not even sick to begin with. It's a night and day difference. See the following 'Quotable Quotes on Psychosocial CBT in ME/CFS' for more info. Also take note that the people these quotes come from are considered to be the top dogs in psychosocial CBT in ME/CFS, ie they're not just random outliers-

https://groups.google.com/forum/?fr... "
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Reply #6 - 06/25/12  8:34am
" I read some of those quotes for that link you gave in the bottom of your last message Beanless.

That makes me mad! I mean really mad! The way those are worded they clearly are viewing cfs as a hypochondriac disease.

One of the quotes says that if a cfs patient gets a lot of support that the support person should be invited to come in with the paitent and then be encouraged to be LESS supportive. That seriously gets to me. By reading in this forum it is common that people are unsupportive of us (with cfs) and lucky if they are supportive. Can you imagine if the one person who supports you the most is told to back off by your doctor? What damage these people must be causing. If their patients aren't thrown into depression after seeing them I would be surprised.

Seriously if I saw a medical "professional" like those that are quoted and they treated me like that, I would probably start bawling right there. It's hard enough without having the people you pay to help you tell you that you are simply deluding yourself.

I knew this king of thing existed in the medical community, but not to this point.

The truth is that most of us think it's all in our heads at some point, usually before we have any idea it might be cfs. And what happens? We act like we're healthy and it causes us to crash. As bad as a crash is I hardly complain about it....because it reminds me I'm not just a lazy couch potato.

Sorry to get all emotional on all of you. Those quotes hurt. I can't help taking them personally right now. And who else can understand getting real emotional over something like this than all of you? "
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Reply #7 - 06/25/12  11:28am
" Yeah, that's the entire point of psychosocial psychobabble in ME/CFS. They think that ME/CFS is a form of 'learned helplessness'. The worst part is is how utterly disingenuous and/or dishonest they are with the press and media when asked, saying that of course they believe ME/CFS is a 'real illness' (however when they say illness they really are referring to ME/CFS being an entirely behavioural illness similar to anorexia nervosa, not an organic disease process) which in some cases has a 'viral trigger'. It can sound convincing if you don't know the background on the subject.

However the thing is, is that basically the entire 'model' that the psychs use is that while ME/CFS patients might come down with a virus, it isn't in fact the virus that makes people get ME/CFS. The psychs believe that it is the reduced activity that comes from the initial illness that gets an otherwise healthy person to sort of start taking advantage of others and that this becomes a learned habit. Sort of like if you get sick and people might do things for you to be nice, like bring you food, etc. They think that ME/CFS patients simply become accoustomed to this 'sick role' and the 'secondary gains' that it brings, such as increased social support (never mind that, as you say, most patients receive only ridicule and isolation from others, even their own family, not people waiting on them hand and foot as suggested by the psychs. I myself didn't even tell anyone I was sick for several years, including my family). Then as a result of the person not doing as much as they used to, partially as a result of people helping them, they become deconditioned so that when they do try and do something like they used to, the psychs say that the 'crash' of PEM that ME/CFS patients experience is really just a normal, everyday response to exercise that ME/CFS patients are some how 'incorrectly interpreting' as a sign of still being sick with the initial triggering virus, but to the psychs it is just a normal response to exercise that is being 'misinterpreted' by the patient.

It's so freaking convoluted how ridiculous it is and how the psychs just lie and lie and lie yet no one outside of the patient and/or patient advocacy community is educated on the subject enough to call them out on it so there's no one to challenge them because they have become so good at covering up what they really believe. The early papers go more into detail about the above stuff and can be pretty offensive, now they mainly just talk in code as a result of patients getting into such an uproar over the things they write. Their beliefs haven't changed though, just the language they use. Nowadays it's mostly 'dog whistle psychobabble' where only people who are educated on the subject such as other psychs and people who are familiar with the research know what they're talking about. I can't even really read psychobabble papers anymore because when I do I can feel the blood start throbbing behind my eyeballs and I figured I'd better quit before I gave myself a stroke or something.

The thing is, for patients with anxiety disorders and/or depression, whom are commonly misdiagnosed as having ME/CFS by these individuals due to using lax diagnostic criteria combined with the fact that these psychs believe that ME/CFS is simply a variant on anxiety disorders and/or depression to begin with, the techniques they suggest could well be useful for these individuals since the techniques in question were developed for the treatment of anxiety disorders and depression to start with. That's why they get the positive results they do in their studies and the high drop out rates too. The drop outs are the real ME/CFS patients who aren't counted in the results. It's also why the negative predictors of treatment are things like 'symptom focusing', 'lack of control over the illness', 'being in receipt of disability payments', 'strong belief in an organic aetiology of their illness', etc. ME/CFS patients have a lot more symptoms, the illness is entirely out of our control, a lot of us can't work so need to be on disability, etc, whereas the anxiety disorder patients don't have the symptoms we do, they are more open to a psychological explanation, etc. Oh boy I could go on and on.

On the bright side is that when the cause of ME/CFS is finally found, or even if a good treatment is found such as Rituximab, then I think people will really start asking the hard questions and doing their research, and then oh boy oh boy will the psychs have some serious splainin' to do!

http://en.wikipedia.org/wiki/Dog-wh... "
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Reply #8 - 06/25/12  12:51pm
" You go, Beanless!!! "
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Reply #9 - 06/25/12  2:06pm
" I couldn't read the Mayo study or the Google thing. My brain shuts down after a few sentences.

The CBT I am talking about involves letting go of the negative thoughts and attitude and instead concentrating on the good.

I had a hard time reading Carrie's post on Hunter Hopkins but didn't see anything about treatment or a care plan.

When you are the best, everyone enjoys throwing stones at you. Unless you have been to Mayo, don't dismiss it because of what someone said.

Not all patients are compliant. They want an easy answer or a pill. They have a preconceived idea of how things should go and when it doesn't it's Mayo's fault.

Anyone want to bash Johns Hopkins? "
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Reply #10 - 07/04/12  10:28am
" Hi, I am in Columbus (not far from St. Paul) and I would recommend Dr. Waheedin, a rheumatologist at Blaine Fairview clinic. He understands al the connections.

It is amazing how much we have to educate doctors. When do WE start getting paid! "

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