My First Mayo Clinic Experience

What a world it was to walk into Mayo Clinic, coming from small town Idaho. The place is bigger than my elementary, middle, and high school (all of which are in ONE building). Even just based upon appearance I immediately felt confidence in the facility. However, this place was huge, and upon first stepping in, it should have been very over whelming, yet there were people to help everywhere you looked. We walked up to one of the help centers and someone kindly gave us exact directions to get to where we needed to go.

My first appointment was just a scheduled time to be there and register. Meaning, give them my insurance card, drivers license, that appointment was at 7 am and my next was at 9:30 so we went back to the hotel, and I power napped. I was fasting so I was cranky.

Back to the clinic for my 9:30 appointment, this was the real deal appointment. I was lucky enough to be placed in the care of one of the top neurologists in the country. I didn’t know much about Dr. Goodman going in, Other than the fact that he knows his stuff.

He walked into the room at 9:29, and did the interview and exam 100% by himself. He was thorough and you could tell just by watching him how brilliant he is.

I have dealt with a lot of doctors over the last 10 years and I have grown to realize that the good specialists are the ones that quietly stew in their brain and don’t have time for chit chat. However, I was pleasantly supported by Dr. Goodman’s bed side manner.

Dr. Goodman is a kind and brilliant man, and from the moment I met him, I had all the confidence in the world in him.

He did his exam and then sat and had a conversation with me. He asked “first I want to know about you, what do you want out of this visit?” I simply stated “I want to be 24 years old and feel like I’m 24 years old, and I will do whatever it takes to get closer to that.”

He said “alright, I’ll tell you what I see but first I want you to hear me say that I am validating your symptoms and I see clinical proof that something is going on.”

There aren’t words to properly explain the validation he gave me in that moment. For 10 years I have been kindly (and sometimes not so kindly) told that I’m crazy, that my symptoms are clinical manifestations of mental disorders. I have been told I have depression, ADD, bi-polar disorder, PTSD and flat out told I’m a hypochondriac. When you are told all the time that you are crazy, it is damn hard not to believe it. I have been on 4 different types of antidepressants. When I flew to Phoenix I was on three different antidepressants, and honestly thought that would be my life forever. (Happy to report that I have successfully transitioned off of one, and will begin working on the other two).

Anyways, following that appointment I had to continue to fast until another appointment at 2:30. This appointment was the reason for fasting. This appointment was an appointment for a pretty big test, it took about two hours. This was a test to test my Autonomic Nervous system, so my sweat and hormonal responses to certain stimuli. I was strapped to a table and first they tested my sweat response by putting sensors on my skin, adding some acetylcholine (neurotransmitter) and then conducting electrical stimulation to the area to see if I would sweat. Not going to sugar coat it here, that test was a bit uncomfortable, but it was quick and honestly I would take days of getting electrocuted if it meant someone would give me answers. Next I did some big in hales and exhales timed with a machine, then I did a forced exhale with back pressure again timed with a machine, and the final test was a tilt table test. If you aren’t familiar with a tilt table test, basically you are just secured to the table and they take you from laying to standing and measure you vitals. Super easy, and very routine diagnosis for POTS.

After that I was done for the day, it was about 4 pm and I was finally able to eat and have a bit of caffeine. We took the rest of the day to explore the area and then had dinner at Whole Foods (a health fanatics dream land). And then headed back to the hotel for some sleep.

The next morning my appointment was at 9 am. This was just a lab appointment to get some blood draws, and by some, I mean a lot. Following the blood test I could drink little bits of water, but needed to remain fasted for another test at noon. This test was to determine my vital signs and hormonal responses to stimulus. This one was pretty easy, I got to sleep for 30 minutes and then I stood for 10 minutes. My vital signs were measured and blood was drawn at each step (yes day 2 consisted of a lot of blood loss). Following that test I was allowed to eat, and most importantly have some coffee. My sweet nurse had heard me say earlier how the worst part of fasting was no coffee, so they had coffee waiting for me as soon as my test was complete.

The last thing to do that day was get my holter monitor on for the next 24 hours.

I am in the middle of, and was also at the time in the middle of, doing a big fitness program so I asked if I was allowed to workout with the holter on, they said “You can do anything you want to but we don’t want you to sweat.” Perfect, I don’t sweat anyways!

We went back to the hotel, I got my workout in for the day, and then we headed out to find a trail to hike. I was not about to let the beauty of Arizona go to waste, so we hiked (slowly, because I was seriously lacking blood volume). And then back to Whole Foods for some dinner.

Day 3: The only thing on my agenda was to start my 24 hour urine test, and drop off my holter monitor. So this day we were pretty much free to explore Phoenix. One of my best friends happened to be in Phoenix at the same time we were, so we met her and her family at the zoo. It was a perfect last full day in Phoenix.

Day 4: I just had to drop off my urine and then head to the airport.

Leaving Phoenix was tough. I became so attached to the city. It is the place leading me to answers, and I loved the sun. I honestly didn’t want to leave, but I left knowing with all my heart that we would be back.

Right now I still don’t have the answers, because I have to go back for a follow up to get those answers (like I said, I knew we would be back). However, even without answers; my heart is so at peace. I feel empowered by my limitations, and validated in the fact that those limitations are real.

So I guess for now, this is all I have until my next trip to Phoenix. But, I do want to say; if you are struggling with something, or you are not getting the answers or help you deserve, I HIGHLY encourage you to reach out to the Mayo Clinic network. They are amazing, and they will help.

All the BS of IBS and SIBO

Irritable Bowel Syndrome (IBS) is a broad term that covers bowel irritation/complications without the presence of a diagnosed structural explanation. The explanation usually falls into the category of neurological, vascular, or muscular. In my case, the problem is most likely all three, and the way they coordinate with each other.

IBS goes hand in hand with POTS, because POTS is autonomic nervous system dysfunction and digestion is an autonomic function.

Small Intestine Bacterial Overgrowth (SIBO) comes into play because gut motility is slowed, essentially making it so that the bacteria that is supposed to grow in the large intestine, has the time to take up residency in the small intestine.

My IBS symptoms are pain, nausea, alternating constipation/diarrhea, vomiting, bloating and food intolerances. SIBO is pain, fatigue, acne, and a type of bloating that crosses the line from I’m uncomfortable to I can’t hardly move after I eat. I wake up feeling pretty normal, and then as soon as I eat something, I bloat up. The bloating gets worse and worse throughout the day, and come night time I can’t hardly leave the house.

SIBO can be “treated,” but the recurrence rate is extremely high. Symptoms will disappear for a month or two and then slowly return. Sometimes you can treat the underlying cause of SIBO, eradicate the bacteria, and move on with life. However, with POTS, you can’t treat the underlying cause, because POTS cannot be cured.

I have done one round of Xifaxian (the antibiotic used to treat SIBO). It is an extremely expensive antibiotic (about 1000-1500 dollars) that insurance often doesn’t want to cover without a fight. I am blessed with an amazing GI who fought hard and got my insurance to cover the medication. I took the antibiotic three times a day for thirty days. After just three days my symptoms started to disappear, and they stayed away for about six weeks.

I eat a low FODmap diet, which essentially means I don’t eat anything that is highly fermentable. You know all those foods that they tell you to eat for gut health? Basically I have to do the opposite. When I do eat vegetables they are low FODmap veggies and they are steamed and usually blended or pureed and fruits are pretty much out of the question.

Anyways, because POTS causes decreased gastric motility, my case of SIBO was pretty much guaranteed to return. Basically my body creates the perfect environment for SIBO to grow.

I tried to tough it out with these symptoms for over a month, but two weeks ago I got to a point where I was too uncomfortable to function. I called my GI and he asked me to give it through the weekend, just incase it was something viral. Come that Monday my symptoms had not gone away. A few days later I started a second antibiotic regimen, this time a ten day course of ciprofloxacin and metronidazole. The combination of these two is a bactericidal and a bacteriostatic (bacterial killer, and bacteria inhibitor) along with anti fungal and anti protozoal. Cipro is taken twice a day and metronidazole is taken three times a day. I’m currently on day five of this regimen.

To get a better idea of what is going on, I did a microbiome test from ubiome (before I started antibiotics), but results on that take three to six weeks (more to come on that later), and I could not wait that long to try and rebalance my flora for a bit.

Right now, I am feeling much better. Being on antibiotics is kind of a hay day for someone with SIBO because you have to eat in a manner that “draws out the bacteria,” so that it can be killed. Meaning I get to eat all the raw fruits and veggies my heart desires right now. That’s what every girl dreams of right?

Update to come when my ubiome test comes back!

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