For people suffering from Orthostatic Intolerance, Postural Orthostatic Tachycardia, Mast Cell Activtation or EDS. Follow me as I document my struggle towards better health.

Advice to John on Dr. Levine's Exercise Program

The exercise program I have been on is very specific to treating orthostatic intolerance; developed by Dr. B. Levine who has performed significant research on POTS,OI and physiology.  The program lasts for 3 months and has very specific exercises for each day with some days off for resting.  Aerobic exercises must be done with a heart rate monitor so that the patient can ensure that their heart rate remains within the specified range for a specific period of time as prescribed by the exercise program...this is the 1ST KEY FACTOR to the success of the program.  The exercise program forbids training while upright or standing until the end of the 3 months.  All exercises are recumbent either using a recumbent cycle, swimming or, considered best of all, a rowing machine...this is the 2ND KEY FACTOR.

As far as I understand, there was an initial study with a small group of people with POTS/OI who performed the 3 months of exercise at Dr. Levine's labs.  I was told by one of his researchers that over 85% of participants showed dramatic recovery.  The study was then expanded to include 300 patients through-out North America (I am one).  Dr. Levine's research will be published in the next couple of months I believe.

If you are not experiencing the recovery you expect then I suggest you might want to try following the heart rate method as explained in my "exercise" page on the blog.  Also, if your diagnosis is confined to OI and/or POTS then you may want to consider weaning off the florinef and midodrine.  Participants in Dr. Levine's program must be off all meds.  When I started I was barely out of a wheelchair.  Dr. Levine's research as well as others seem to show that the body can adapt to sustaining appropriate blood pressure/heart rate/blood volume/arterial pressure through this managed "orthostatic training" combined with fluids and increased sodium.  However, it appears that people with chronic OI (like myself) must change their lifestyle to accommodate the physical training and diet needs of their body forever.

For me, nutrition has been critical.  I too avoid caffeine but I'l be d*mmed if I give up a nice glass of borolo now and then!  

I eat nutritious foods, organic when I can, and use supplements such as Greens+ because of the iodine, I also take vitamin D, B2, calcium w/magnesium, Omega 3 and a multi-vitamin.

Going off the meds, I would think, could be a sticky problem for you.  On one hand they may inhibit your body's ability to adapt enough to recover but on the other hand your symptoms could dramatically worsen while you are weaning off them.  

Best of luck with this and if you do choose to change your regime please let me know what happens.


  1. How does iodine help POTS?
    Are most of the participants in the study able to go places without a wheelchair?
    What kind of things do you do in a normal day? Do you do something, then rest a few hours, then do another thing if you can? Or can you do simple things all throughout the day without taking breaks?

  2. Hi Elisabeth:

    I very much appreciate your reply. It has given me food for thought. I'd be happy to get off of Florineff and Midodrine because I don't believe they are doing me any good and may even be exacerbating my problems. However, I am loath to step down my training program after a year of very hard work and some muscles my wife appreciates and are ego boosting for me. :-)

    Is Dr. Levine taking new patients? I wonder if he could simply tweek my current program a bit and ditch the meds. How much time did you have to spend in Texas?

    The guy I am working with now is Dr. Fredeick Kusomoto of May Clinic:

    His big thing is building every muscle in the legs and to a lesser degree the core and arms, but he also wants me to continue with the meds. I also do cardio because of slightly above normal cholesterol and because I like cardio. My fitness program has evolved based on my fitness level and trainer. My old trainer was a professional female soccer player who believed heavily in machines and free weights.

    My new trainer is into circut training, and using the body against itself. He's also had me do some fight fitness (boxing and kick boxing against a bag). He's less into machines than Lori, but still believes in free weights. He also likes to blend strength training and cardio. Right now, I think my legs are as strong as ever and my cardio fitness is great but my upper body is a bit less buff than it was with Lori. Anyway, getting buff ain't the goal. The goal is improved health.

    As for diet, I am ok not drinking alcohol but I miss caffeine horribly. Both are vasodepressor so I need to steer clear.

    I am going to follow your blog very carefully since you are the first person I have run across who is of similar age and is employing exercise to try and improve health. I'll keep you posted on my progress and choices.

    Best regards and keep at it. Your blog is inspirational!


  3. John, who was your old trainer? I was a comptetitive soccer player before POTS!
    Elisabeth- what do you think of pilates for strength training days? When you look at the cfs/me ability scale how do you rate yourself before dr levine's program and now at the end of it? I'm just curious

  4. I love pilates so long as it is lying or sitting down.

    Using Dr. Bells scale I was a 30 prior to starting the protocol and a 70 (sometimes an 80) now. Which is great!

    Dr. Levine's program can be done without visiting Texas. That said, if you cannot get on the study then I believe Dr. Levine does take private patients. His contact information can be found on this blog. ;-)

  5. Thanks, that gives me some hope. 30 was my best on dr bells scale, I am trying to work back to that after a flair. Maybe there is hope of getting even stronger than that!!!! Do you think over the next fee months you'll continue to get even better?

  6. I sure hope I will be able to feel even better! I am going to have to stay vigilant about my salt, exercise, fluids and supplements.

    If you haven't tried an iodine suplement to see if you are mildly deficient ot if your thyroid function is low (lab tests are inexact as people's thyroid function is quite variable- a level which makes one person feel great is too low for someone else) As mentioned, I use Greens+ It takes about 2-3 weeks to feel a difference. ;-)

  7. Amalee:

    My trainer was Lori Lindsey, who played for Washington Freedom last year and now is with Philadelphia Independence and the U.S. Women's national soccer team:

    Lori was a fantastic coach, and I was very lucky to have worked with her. She agreed to take me on even though I was quite ill when we started and had no idea how I would handle strength training. She was very patient with me and new how to push me a bit without pushing me over the edge--just the sort of strong encouragement and positive coaching I needed. She's an awesome athelete and an even better person. I can give you some more info offline. Elizabeth can pass along my e-mail address to you. Best of luck with your training!