For people diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) and Orthostatic Intolerance (OI), follow me as I document my progress towards recovery while on the research treatment program by Dr. B. Levine of Texas Click here for more...

Wednesday, August 24, 2011

Is the Levine Protocol a Cure for POTS?

Excellent question if I do say so and I believe there is a very simple answer: If a patient's POTS or OI is caused by deconditioning then the answer could be "yes".  If the POTS is caused by something else then it probably will not cure POTS because in order to do that you would need to cure the underlying condition. 


If a patient's POTS is caused by something other than deconditioning then will they benefit from the protocol?

Here is my rather long answer to the above.  POTS does not seem to be a disease rather is a cluster of physical symptoms which present when certain conditions are met.

For example, here are some conditions which may cause and/or make POTS symptoms worse:
  • Ehlers Danlos Syndrome
  • Parkinson's
  • Multiple Sclerosis
  • Mastocytosis
  • Mast Cell Activation Disorder
  • Hypthyroidism
  • Menstruation
But regardless of which set of conditions are present in a patient certain factors appear to be key to ameliorating the nastier symptoms of POTS.  Namely:
  1. Ensuring adequate blood volume
  2. Promoting and maintaining healthy cardiovascular and circulatory systems
The protocol is designed to help with both 1 and 2 above while at the same time dealing with the inconvenient matter of exercise intolerance which POTS patients can suffer from.

So to answer the question above as "If a patient's POTS is caused by something other than deconditioning then will they benefit from the protocol?"  the answer is most probably yes!

9 comments:

  1. I wish every POTS patient would get on the Levine exercise program. I fully agree with you Elizabeth. If your POTS is just caused by deconditioning, then re-conditning your body can probably "cure" you. BUT, if something else is the underlying cause of your POTS symptoms, exercise may make your body better able to cope with your symptoms, but it almost certainly won't cure the underlying problem.

    I share some of Stacy's frustration with how Dr. Levine has promoted his research and results in the media. I do think it's unprofessional of him to even hint at the word "cure" in relation to POTS. It is way too preliminary to say he's found a cure, and his original study group was so small, it's inappropriate to assume that the small group of people in his study represent the broad cross-section of the population that has POTS and the numerous underlying causes that many POTS patients are coping with.

    I for one, am 100% certain that deconditioning was not the cause of my acute onset of POTS like symptoms. I was literally cross country skiing up a mountain 2 days before I got sick, and I was snowboarding 8 hours a day for 7 days in a row before that. I was in excellent cardiovascular health and in great shape.

    After having to deal with numerous neurologists and cardiologists who referred me to Dr. Levine's study when they dismissed my serious health problems after the onset of my POTS like sypmtoms as "just deconditioing," it's fair to say I am a little angry at Dr. Levine for promoting the idea that all POTS patients fall under the deconditioning umbrella and that all of us have smaller than average hearts. Thankfully, I was lucky enough to get myself to Cleveland Clinic, where they determined that my severe autonomic neuropathy, which was causing my POTS symptoms, was in fact caused by an autoimmune disease that required immediate interventional treatment (IVIG infusions). No amount of rowing and recumbent biking was going to "cure" my neuropathy or my POTS. If I had taken Dr. Levine's theory that we all have small hearts and are just deconditioned at face value, I would not have found out about the serious autoimmune disease causing my autonomic neuropathy, and I almost certainly would have gotten much worse over time.

    Dr. Levine's recent research does nothing to address the fact that so many POTS patients have neuropathy. If we are all just suffering from small hearts due to deconditioning, then why do we have neuropathy? Last time I checked, deconditioning doesn't cause autonomic or sensory neuropathy. He doesn't even report on whether any of the patients in his original study had autonomic neuropathy. And his research also doesn't discuss which of the sub-types of POTS his test subjects fell into - Partial Dysautonomic POTS, Hyperandrenergic POTS, Hypovolemic POTS, etc. For all we know, he just had about 20 people who were really, really deconditioned and once they exercised they felt better (and I am not trying to be mean to his test subjects - I know some of them). I'm just saying his study doesn't give us enough info about his test subjects to know if they represent the diversity of the way POTS can present itself.

    So, again, I am doing my Levine exercises to help keep me in shape and get whatever benefit out of them I can, but I am really disappointed in the way Dr. Levine is using his rather small study to try to label and classify a very large, diverse patient population. I am sure there will be patients who are dissuaded from trying to find the underlying cause of their POTS symptoms because of the way he presented his study results. The last thing we POTS patients need is more doctors being inaccurately informed about the cause of POTS!

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  2. I see the case that can be made from everyones point of view. Nevertheless, I actually lean more towards the comments made by Stacy and Annomy. about Dr. Levine's protocol. From a guy, who has been suffering from autonomic neuropathy for a few years now and whose life has been stripped. I saw Dr. Levine's study and it gave me hope. But then reality hit. If it was just about exercising than it would be prescribed by everyone. I have seen some of the most elite experts in dysautonomia at 3 major medical centers. Yes, they all informed me to exercise. Well, that didn't help me much...just go home and exercise. I knew if I did't exercise my prognosis will be much worse. So, I used Dr. Levine's protocol for me to reference to and use as a tool when exercising. Finally...some sort of guide that I was looking for to help start exercising. Yes, his research has a lot of unanswereed questions, small subset of patients, and can taken the wrong way by some POTS suffers. Table all that and exercise. Whether its his protocol or not, find something that works for you and try to exercise. Cause we have little options in medicine right now that really work for us.

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  3. One thing that Dr Levine also doesn't address is which came first, the POTS which leads to deconditioning because its feels so awful to move or the deconditioning which causes POTS. I would probably fall into the first category. I'm sure there are people who decondition first but the vast majority of POTS people I've talked to/heard about had pretty active lives and the POTS caused them to become inactive thereby exacerbating the POTS symptoms. If he was a good researcher, he would address that in his journal articles but he does not. I agree with most of the above opinions that it seems like Dr Levine wants to dismiss POTS.

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    1. I agree with you, i have had these symptoms since i was 3 and ot just kept getting worse and worse as i got older. I have never been able to be as active as everyone else cuz i would always get sick. And its been a lot worse during my pregnancy so i dont really believe that excercise is a cure cuz if that was the case i wouldve felt better a long tome ago. The problem is is that they dont know the underlying cause of my pots and salt, water, medication and excercising isnt helping me. They just keep saying well obviously I'm not doing something right. Im just as frustrated as everyone else.

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  4. Elisabeth i'm from Brasil and i have POTS. Sorry for my english. Please, keep writting about POTS and your progress with Levine's protocol. Your site is very, very important to me. It's possible brodcast your email? I wish you good luck. Michele H. S.

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  5. Hi my name is Kayla, my mom, Tanya is a subscriber to this website. I am wanting to do a science fair project as an awareness for Postural Orthostatic Tachyardia Syndrome. I am a 14 year old girl who has it myself, I have been diagnosed for 2 years, but I didn't get treatment or a diagnoses for a while. I want to let others know how to help themselves recover, and how to prevent POTS for those who dont already have it.
    I want to do my project on excircising and if it helps POTS. If anyone has done the Dr. Levine excircise study and has the before and after statistics, or has any advice please feel free to email me at kayhug7@gmail.com.

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  6. Then there are patients like me, who have POTS due to Chronic Fatigue Syndrome, which is something like having an allergic reaction to exercise (almost!) My illness flared up so horribly due to just one hour a week of gentle water aerobics, that I could barely sit up or talk. I ran a constant fever and have never been sicker in my life. I am sure it exacerbated the POTS, but all I could do was lay there, for several months, and pray for it to get better. After 2 years my body still has not fully recovered to where I was before the exercise. Exercise can be very dangerous to some people, and it is irresponsible to ignore this and prescribe exercise as the cure all. It is also insulting because people often have to get as sick as I did before we finally _stop_ exercising. It is not laziness bringing on these symptoms.

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    1. Wow - so sorry to hear of your troubles. I hope you have been investigated for a mast cell condition because it certainly sounds like you should be. Don't confuse the findings of the Levine protocol and re-read my post above. If you still believe people are calling the Levine protocol a "cure all" then I need to do more explainin'
      Cheers

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  7. Hi there I have an appointment coming up with dr Levine and would like some more information on him and his studies so I am more prepared (to bombard him with questions) when I go see him can someone who can help me please email me at claudia_walls@yahoo.com thanks!!

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