A Chat with Mayo Clinic Doctor

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It has been 14 weeks since I left Mayo Clinic. This morning I called Mayo Clinic because it had been nearly a month since I called asking if Dr. Fealey had any additional input. His secretary seemed horrified I had waited so long and told me Dr. Fealey would personally call me. I was so excited! If you’re just tuning in, Mayo Clinic in Minnesota is where POTS was “discovered” or whatever you would call it when they figure out the cause and name for a disease. He is a top research on the topic and among the best doctors you could see for POTS.

I immediately started making my list of what I wanted to hear his opinions about. It looked a little something like this…

Changes I’ve Made

  • less carbs, switched out Gatorade for tomato juice for sodium
  • taking sodium tablet
  • doing recumbent bike and weights
  • got rid of Ambien
  • continued with compression stockings
  • got fluids at the hospital as needed

Improvements I’ve Seen

  • I am up 5 minutes on exercise, but have been stuck at 20 minutes for 8 weeks
  • I am still nauseous a lot, but am not vomitting

Major Issues

  • I had been told to expect to be easily doing 40 minutes of exercise per day by now
  • Not only can I not do more than 20 minutes of exercise, I can’t really do anything else the rest of the day because it fatigues me so much and causes my symptoms to flare up.
  • I take 5 mg of Adderall per day, but need to take 20-30 mg to do anything such as go to a family event.
  • I have been getting low grade fevers, up to 101.00
  • In the evening, I slowly start shaking and by the end of the night I am shaking so hard it can be difficult to even type without hitting the wrong keys.

Questions (answers in italics)

  • Can/should I exercise with a fever?
    Listen to my body. I should try and get the fever under control and get exercise as it is my treatment. However, don’t be stupid (my words) and overdo it.
  • Fluid really help a lot. Should I schedule for weekly IV fluids rather than waiting until I need them?
    This isn’t a good idea because my body would become dependent on IV fluids. I should try and get fluids orally. However, I should still go to the hospital and get fluids when I need them. They won’t hurt me if I need them. I just shouldn’t be getting them if my body isn’t in need.
  • Is there anything else I should be doing?
    I need to try and eliminate and avoid stress in my life. Stress causes POTS to flare up. Other than this, no 😦

The next 5 hours went by so slow. I expected the doctor to wait until the end of the day to call me since he has patients all day long. When he called, he came across as concerned and spent 30 minutes talking to me. He is such an amazing doctor. I trust him so much and never second guess him. He is not getting paid for this time and knows it is unlikely I’ll ever be back up there to see him and pay for an appointment. Here are the highlights of our conversation…

  • He encouraged me to not give up hope even though I am only seeing tiny gains, especially compared to what was expected. He encouraged me to anticipate good days. That’s my kind of doctor πŸ™‚ He thoroughly assessed me for signs of depression and anxiety (I could tell he was doing this since I used to do it myself)
  • He said it sounds like I may have Myalgic Encephalomyelitis, ME for short, (AKA Chronic Fatigue Syndrome) in addition to POTS. The main things that lead him to this conclusion were the low grade fevers, severe exercise intolerance, and the intensity debilitating fatigue. Hearing this kind of jolted me because for 4 years, I was told I had ME/CFS. Then, I found out I had POTS. I thought, “Welcome back old friend…”
  • According to http://www.mayoclinic.com

    Chronic fatigue syndrome is a complicated disorder characterized by extreme fatigue that can’t be explained by any underlying medical condition. The fatigue may worsen with physical or mental activity, but doesn’t improve with rest. Symptoms include
    Fatigue
    Loss of memory or concentration
    Sore throat
    Enlarged lymph nodes in your neck or armpits
    Unexplained muscle pain
    Pain that moves from one joint to another without swelling or redness
    Headache of a new type, pattern or severity
    Unrefreshing sleep
    Extreme exhaustion lasting more than 24 hours after physical or mental exercise

  • I have every single one of those symptoms. The enlarged lymph nodes, sore throat, and pain that moves from one joint to another are not that common with POTS. It is possible POTS causes some of these symptoms POTS is the autonomic nervous system malfunctioning. There is no way to know for sure! It is also to note, with ME, extreme exhaustion follows mental exercise/exertions. This is not true with POTS.
  • Dr. Fealey made sure to mention he is no expert on ME and also pointed out, unfortunately, few exist. We discussed Infectious Disease Specialists and how they haven’t found a cause for ME. I’ve been to plenty of Infectious Disease Specialists so I knew that already! He cautioned me against people on the internet and people claiming to be “experts” who take advantage of people with ME who are desperate. I can totally see how someone in my situation would be easy to take advantage of. Fortunately, I am a Google maniac and I don’t do anything I can’t find empirical research on.
  • The treatment for ME is similar to POTS in that exercise is encouraged. For ME, exercise isn’t really a treatment or solution. There is absolutely no treatment. For POTS, exercise and increased sodium intake can lead to recovery. There’s really no way of knowing what came first, although it is more likely POTS came first. The point is, despite the minimal progress I’ve made, exercise continues to be my only option.
  • Being told I have ME is a huge bummer. There is no treatment. While there is no known cause of ME, that doesn’t mean a cause doesn’t exist. It is possible one day they will figure out what causes this and then figure out a treatment. With everything else scientists and researchers are doing these days, I think it seems possible!
  • He asked about my social/emotional life. He really thinks the large amount of stress I have been under lately has stopped me from progressing. The doctor said it is a known fact stress causes POTS to flare up.
  • He acknowledged it is difficult for someone to be happy that they can exercise 20 minutes a day and then do nothing else and that they aren’t throwing up on a weekly basis. However, these things are progress. What they originally thought I could accomplish in two weeks actually will take me a few months. I have been trying to be grateful for the progress I have made, but it was really nice to hear him say that it isn’t easy to appreciate.
  • He told me to never to just accept being as sick as I am. I should always continue working on my treatment plan. My progress may be slower than the line at the DMV, but it IS progress and can’t be made if I don’t keep trying. I should always be thinking that this will pass. He said “anticipate good days”. I like this πŸ™‚ He kind of seemed like he must come across a lot of patients who are just defeated and ready to give up. I already kind of thought all of these things, but it was still really nice to hear him tell me. Hearing a doctor say it makes me feel like appreciating my baby steps, and hoping to get back to full health, isn’t just me being a silly optimistic girl. A world renowned doctor agrees with me.

So in summary, I have ME and POTS. There is nothing more I can do about it because ME has no treatment. There’s no specialist to see or medication to try. I should expect my progress to be extremely slow. However, progress is progress and I should continue with my treatment plan.

Tomorrow I am going to see my GP to discuss the process I currently go through to get IV fluids. I’m hoping to get rid of the blood test!

25 thoughts on “A Chat with Mayo Clinic Doctor

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  1. Hello online friend,
    I don’t have chronic fatigue so can’t comment on possible cures or solutions but I do have a chronic auto-immune disease and my son is on the spectrum albeit mildly so I do a lot of reading and chat around. For the first four years following my diagnosis, I viewed my medication as my treatment. I asked my doctors about things like diet and Chinese medicine and they said it would improve my general health and I missed the point of this at the time. I needed to get my general health as good as possible to fight this disease. Catching colds etc causes flares etc. I have been converted to the necessity of a less processed diet. Eating raw fruit and veg wherever possible and finding out the nutritional values of food. I am a chocoholic and I’ve eaten vegies but not a lot of fruit. I have lost 10 kilos this year. I caught the flu and had a flare despite my efforts but I’m still here. I am reading a book called the Autism Revolution and it explains a lot of the so-called cures for that scientifically such as why gluten can cause people problems and how our body works on a cellular level. It is very informative. It mentions bathing in Epsom salts in passing which have magnesium in it and that can be really good for a range of conditions.
    I am still at the exploration stage but felt I should see whether you have looked at diet and also the role of gut health and trying high dose probiotics. I’m in the process of ordering some but haven’t tried them . A friend of mine has had great results.
    I just thought I’d mention these and perhaps someone else on your post could elaborate more or has tried these. Best wishes, and Good luck. We keep up the fight!!
    Best wishes,
    Ro

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    1. Thanks for your thoughts. I’m actually all about nutrition. I don’t eat gluten, egg, dairy, soy, or meat and take a probiotic. It seems to have helped out my belly a lot!

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  2. I love you. Hang in there. Love Jake too. I really
    appreciatle that at his age he is understands and is willing to stand by you through all of this. I know in my heart you will improve, but am so sad it takes so long.

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  3. Sorry if I sound like a broken record, but have you looked into lyme disease? It’s usually misdiagnosed as ME and often leads to POTS. Nearly all doctors have no idea about lyme, even ME specialists. If you feel you are out of other options, I’d track down a lyme specialist if I were you. πŸ™‚ I refused to be labelled with ME as there’s ‘no treatment’ and they don’t know what causes it, and went on the hunt for a cause, found lyme disease, found a specialist place and got tested from the best lab in the world. Now I’m getting treatment and gradually improving. Even my POTS symptoms are improving.

    Hope you’re doing ok x

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    1. You’ve convinced me to take the first step and ask my doctor about Lyme today. She’s very open minded and all about learning whatever she needs to in order to help me.

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      1. Yay! Just remember that if they say something silly like ‘this state doesn’t have it’ or ‘it’s so rare you can’t have it’, they’re just proving their lack of knowledge. If I had a dollar everytime I heard one of those I’d have enough to pay for my treatment!

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        1. Oh yes! Do not let ANYONE say that anything is so rare you can’t have it…I’m living with 2 rare diseases (that affect 1/250,000 people)….so I fully support that we MUST be our own best advocates! πŸ™‚

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  4. Whoever said life isn’t fair must have been thinking of you. One of those diseases is bad but to have both is awful. Thank God you are the smart strong person you are. And you have Jake and E and so many people that love you, you will get through this. Wish I lived closer so I could help you. Love you.

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  5. Wow, so much good information in this post. That’s good to know about IV fluids. That also answers my question about why it might be that some POTSies complain of regular fevers. I agree with Roweeee. Diet and general health can be HUGE. If you have bad digestion, try playing with your diet until you don’t. But I think you know that. The good news is, if there is a possible way to recover, you are the kind of person who will find it, and there probably is one. Amazing how much power a good doctor has. I felt so much better when the POTS specialist in town told me to go back to school, and that I was doing great. Thinking of you. ❀

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    1. I’m happy you learned something, I sure did! I was really happy to learn about the IV fluids. He said as long as I just keep doing it how I’ve been doing it, it’ll continue to help me, not hurt me. Thanks for your support. 😊

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  6. You know what struck me the most about your post? The importance of remaining hopeful. I realize I need to focus on that more.

    Thanks so much for the comprehensive update….all of that information is extremely helpful.

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  7. Hello

    I don’t really know where to start with info on lyme disease. A good place to start for a basic overview is probably my own page I wrote about it (Heh!)
    http://decimawho.wordpress.com/decimas-lyme-guide/
    I also link to a good list of symptoms.

    For more indepth reading about the disease and it’s treatment read this;
    http://www.borreliose-gesellschaft.de/Texte/guidelines.pdf

    For why it’s a political and complicated disease and why it’s not picked up and treated adequately, read this;
    http://www.ilads.org/lyme_disease/about_lyme.html

    What I will tell you is that you won’t get your test back next week. A proper test takes 3-4 weeks to complete. Also if you had an ELISA – which is the standard one they do, it’s usually negative in proven cases of lyme disease. Your doctor then dismisses lyme entirely and you’re on your own. My first test was ‘equivocal’ then the retest was negative. My GP abandoned me and I went to a specialist private place that sent my blood to one of two only trusted labs in the world. They used the western blot test and I had 2 positive bands on two of the tests. Which according to some doctors in america, would still count as negative. So you have to be careful what they’re using as their +/- criteria. A good lyme doc will say if you have *anything* positive, plus symptoms, you have lyme disease.

    It’s a very complicated disease, both in terms of medical presentation – no one has exactly the same symptoms, and in terms of the politics surrounding it. Doctors in the US get sued and their medical licences taken away for treating it. The IDSA guidelines that are widely in use both in the US and UK were written by people with a financial vested interest. They say 4 weeks of anti biotics will cure you, ignoring masses of studies that state otherwise.

    Do your research, arm yourself. πŸ™‚

    I’m so glad I did. Good luck.x

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  8. i have POTS and may also have ME. i was diagnosed with ME before POTS, then was told POTS would explain my fatigue, and that meant i didn’t have ME. now, apparently, they can coexist. con-fu-sing!!

    i often have low grade fevers as well, usually just around 100, but my regular temp is usually 97. i’ve been stuck at 30 min on my recumbent bike forever. and i have to do it in the afternoon, otherwise i’ll just sleep for the rest of the day. in fact, the minute i get off the bike i have to go lay down and nap.

    anyway, great post! i can totally relate πŸ™‚

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  9. Sorry to ask personal questions about weird details, but you seem committed to helping others with info, so I thought I’d ask: I’m short and thin and was wondering what type/brand of compression socks you like best? Also, can you tell me what meds/supplements you are on now? Finally, do you think, looking back, the Mayo visit was worth it? I mean, apart from a diagnosis for disability- it sounds like “sorry, not a lot we can do besides salt and beta blockers…” Thanks so much for the awesome posts!!
    elizabethmilo.com

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    1. My favorite brand is Jobst. They’re as soft and breathable as compressions are going to get in my opinion. I am exactly five foot, five and a half inches. I’ve always been muscular and therefore I look lighter than I am. When I’m in a throwing up stage, I get as low as 116, when I am eating I get up to 125 at most. People don’t believe me when I say I weigh 120, they think I’m fibbing so they don’t worry. Anyways, I wear a size small stocking. The best way to ensure a good fit is to measure yourself. Each brand has a chart to use to match up your measurements with a size. Here is instructions on measuring: http://www.compressionstockings.com/how_to_measure.php#thigh_high Here is a post I recently wrote about wearing stockings. https://lethargicsmiles.wordpress.com/2013/05/08/blood-pooling-fight-it/

      If you’re asking if I would do it all over again, the answer is yes. They do a ton of tests and collaborate in a team in a way you can’t get anywhere else because there are so few experts on POTS. If you could find a POTS experienced doctors would do the testing to figure out if nerve damage or adrenal issues are causing your POTS, I’d say skip Mayo. If you can’t find that, I’d say Mayo is worth it. Although I’m not “cured” I know I have pursued the POTS diagnosis and POTS treatment as far as I was able. Also, its SO nice being able to call my doctor at Mayo Clinic when I run into issues with POTS and my doctor isn’t sure what to do. They’ve dealt with a thousand people like me, so they usually know what to recommend and how my body is likely to react. Many doctors don’t want to try things out with POTS patients because we don’t react to meds the way they expect us to a lot of the time. This scares them (naturally so) and they really like us having the experts at Mayo to fall back on.

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    1. You should contact your doctor, or call your doctor’s office and ask to speak with a nurse. Do not feel self-conscious; they see this symptom all of the time.

      If you have been taking antibiotics, you may have developed a yeast infection. If you haven’t yet had a bladder infection confirmed, you may be mistaking a vaginal infection with a bladder infection; there is a bit of overlap.

      Give your doctor a call so you can find out! πŸ™‚

      Like

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