Dr. Levine's Protocol- So What Is It?

[cmruls]

I have been searching and I can't find the exercise protocol. What is it? Please post some information. The most I can find is that it is leg strengthening exercises. Stationary bicycle, recumbent Exercycle, rowing machine, stair master type, Is this correct? What else is involved? Please help.

[firewatcher]

The people who are doing the protocol can not post it, legally. They have all signed statements that they will not share the protocol. Your doc would have to sign the same thing. It is for the protection of both the doctor (who wants to control his research) and the patient (who has to be cleared and medically able to exercise.) Any place that would publish Dr. Levine's actual protocol would be doing so illegally.

From reading his study, however, I can guess at a few of the parameters:

All meds that would effect HR or blood volume must be stopped, so that the physiological effects of exercise can take place.

All exercise is done in a reclined or recumbent position, so that the sympathetic nervous system does not engage and overreact.

It is done at a sub-maximal capacity: 75% of maximum determined HR (I don't know how it is determined.)

It is done regularly, at least three days a week of cardio and 3 days of lower body strength training.

It has a gradual warm-up and cool-down with certain HR to be reached during the "workout."

There is a special emphasis on the Concept II rowing machine; apparently, rowers have the largest hearts of any athletes. The physiological basis is to exercise to the point where the heart is physically enlarged and strong enough to pump, as well as expand the blood volume (as is seen in athletes) to compensate for the smaller hearts and hypovolemia seen in POTS patients.

You can contact Dr. Levine's group, they are very willing to enroll you in their research, but your doctor MUST supervise you and report back and you and your doc have to agree not to reveal the specifics.

[toddm1960]

FW did you get on potsrecovery.com and read the full version of this study? He's had a trial ongoing since Jan 2007, this co-hort seemed very hand picked. Some of his statements are out there.......way out there. I hate putting the website out here because it very much looks like an infomercial, but if you snoop around the site you can find a link to the whole study.

[Ashelton80]

Firewatcher is right on the money. The only thing I would add is the determined heart rate comes from your 10 minute stand test results and your other medical records that you have to send them. I don't think it's super hand picked or exclusive like some believe. I honestly haven't heard anyone being turned down to participate. I also had an abnormal QSART small fiber neuropathy test and I was still accepted. They have you fill out a lifestyle survey because I'm thinking at the end of three months the people who still had POTS still scored higher on the lifestyle survey (meaning their quality of life improved).

They may be super busy right now, but it didn't really take me a long time to get my hands on my protocol. If you look on potsrecovery.com like the person above mentioned she has their info posted. It's funny about the infomercial comment because her website is the reason I didn't want to participate in the study. She had it rough for a long long time and wasn't 100% better after 3 months. It took her more like 8 months to get better. I haven't had the issues she had at first. I have only had improvement since after the first week. From hearing her talk I thought I would be back bed bound for the first month, but thankfully that hasn't been the case for me. Good luck!

[firewatcher]

Yes, I have read the original study. I think that the "hand-picked" appearance of the original study is simply the majority of POTS patients. Many of us here (on DINET) have either difficult cases or are in the minority with symptoms (orthostatic hypertension, EDS, MCAD, etc.) I was ready to participate in his latest study and had weaned down on my medications until my GP totally nixed the idea. My GP stated that since my ANS testing and orthostatic stats looked nothing like any of the study participants, he would not approve me for it. He did say that if I wanted to be a patient of Dr. Levine and have a protocol drawn up for me, specifically, he would monitor that. There are several patients of Dr. Levine on the forum and they are not typical to this study. I am curious what he will make of them and what suggestions he has had.

[toddm1960]

If you read the study you'll see all 27 patients had smaller hearts, everyone one of them.....really? He says POTS is caused by inactivity.......really? He says there is no autonomic dysfunction in POTS patients, it's all caused by a smaller heart, exercise and increase the heart size.....and you cure POTS. All of his patients had orthostatic hypotension. Did you see the full conclusion:Conclusions

Patients with POTS had a smaller heart coupled with

reduced blood volume compared with healthy controls. We

therefore propose the name the Grinch syndrome to focus

on this pathophysiologic state. The marked orthostatic

tachycardia in these patients seemed to be a physiologic

compensatory response to a smaller stroke volume that was

attributable to cardiac atrophy and hypovolemia. The func-

tion of the autonomic nervous system was intact in POTS

patients. Short-term exercise training increased cardiac size

and mass and expanded blood and plasma volume, and thus

improved or even cured POTS. These results suggest that

POTS per se is indeed a consequence of deconditioning and

that carefully prescribed exercise training can be used as an

effective nondrug therapy for POTS patients.

Look I'm not against people exercising, I've been trying for 6 years. Everyone needs to try everything, we're all so different some things will work for some of us, not help others at all and still hurt some. But you have to try. I wonder what this guy charges? He's starting to look like a Dr. Teitelbaum curing CFS.

[Ashelton80]

Just curious Firewatcher, what did your ANS and ortho tests look like? Tiffany at Dr. Levine's did mention to me that I definitely had "classic" POTS based off of my test results. Basically my 10 minute stand test from Vanderbilt was 80 to 155 within 5 minutes and stayed there with bp running 120/85 with some narrowing pulse pressure towards the end. Valsalva was normal, ECHO normal and QSART showing mild neuropathy in the feet. Those are the only tests I have had to date.

[cmruls]

"The marked orthostatic tachycardia in these patients seemed to be a physiologic compensatory response to a smaller stroke volume that was attributable to cardiac atrophy and hypovolemia. The function of the autonomic nervous system was intact in POTS patients. These results suggest that POTS per se is indeed a consequence of deconditioning..."

This is from Dr. Levine? Not due to ANS dysfunction? So I have this because I sit around. I don't like what he is saying.

[firewatcher]

My ANS results were different from the POTS group in Dr. Levine's study (all blue text is from Cardiac Origins of the Postural Orthostatic Tachycardia Syndrome. B.D. Levine et al. 2010) in the following ways:

BP response to standing:

"Systolic BP increased in patients, but remained unchanged in controls, whereas diastolic BP increased in all subjects during tilting; these responses did not differ between groups."

My BP was all over the map, but much higher and narrowed, labile pulse pressure.

Valsalva:

"Sympathetic baroreflex sensitivity, as assessed by relating all sympathetic bursts occurring during the 20-s straining period of the Valsalva maneuver to the maximum fall in diastolic pressure, did not differ between patients and controls..."

During my Valsalva test, my BP never dropped as expected, it continued to climb throughout the test as did my HR.

Cold Pressor:

"Cardiovascular and sympathetic responses during the cold pressor test did not differ between groups, even though the HR was consistently greater in patients."

During my CP test, my HR was higher than even their POTS patients' highest HR and my BP was significantly higher than the highest patient.

"The induced tachycardia during orthostasis has been found to be attributable to cardiac atrophy and hypovolemia."

Previously, a cardiac stress test showed a high stroke volume with "hyperdynamic motion" as opposed to the lower stroke volume seen in patients. I also have a "robust" increase in HR with exercise. To keep my HR below 150 bpm with exercise would mean very slow rowing.

My Hematocrit is also well above either patients or controls.

[Ashelton80]

Thanks! So you have a normal volume? I'm assuming the salt loading doesn't apply to you if that is the case. I know one lady who actually had the iodine "volume" test and hers showed similar to you. Her volume was fine, but her body wasn't getting it to the right places at the right time. Interesting. I refused that same test because I'm certain low volume is a huge problem for me.

[firewatcher]

"Thanks! So you have a normal volume? I'm assuming the salt loading doesn't apply to you if that is the case. I know one lady who actually had the iodine "volume" test and hers showed similar to you. Her volume was fine, but her body wasn't getting it to the right places at the right time. Interesting. I refused that same test because I'm certain low volume is a huge problem for me. "

I have no idea what my blood volume is, but my cardiac stroke volume is high (my heart pushes blood!) I do know that my hematocrit is high due to plasma deficit. I did not have a blood volume study done, apparently it would only satisfy my "academic interest."

[icesktr189]

The funny thing is I came down with POTS when I was at my MOST active. I was running between school and work, hardly sleeping.

My echo showed my heart at a normal size too.

[Ashelton80]

The funny thing is I came down with POTS when I was at my MOST active. I was running between school and work, hardly sleeping.

My echo showed my heart at a normal size too.

Are you saying you were "running" like a runner. Or do you mean basically burning the candle at both ends busy type of "running"? I was active and sleep deprived with a 1 year old when I got POTS, but I was not "fit" in a cardiovascular "work out" type of way.

Dr. Levine uses MRI for measuring the size/density of heart not an ECHO. My ECHO was normal as well, but I've never had an MRI.

[Lovebug]

The funny thing is I came down with POTS when I was at my MOST active. I was running between school and work, hardly sleeping.

My echo showed my heart at a normal size too.

Me too! And I've always been an active person...ran track in high school & college. I started working out with weights after college, as well as running. My mom said as a child I never walked anywhere, I ran! But I really started getting bad symptoms (mainly IBS stuff: abdominal pain/diarrhea) when I was working out 6 days/week for 8 weeks. I had to stop from the symptoms.

[cmruls]

Thank you everyone. The information is there if you use the above and look for it.

[yogini]

It's interesting that his protocol sounds like what many of us have talked about on the forum anyway - going slow, less cardio, staying in a reclined position. I personally don't think there are any "magic cures" for dysautonomia, only meds and treatments that can make us more functional and, in some cases, allow our bodies to heal over time. If this dr is making generalizations which don't apply to all of us, then that is unfortunate. I would be more worried if it were one of the leading POTS docs putting out misinfo - the Dr. Grubbs of the world know there are different types of POTS and no one-size fits all cure. I'm still grateful about any research being done to help POTS patients, even a small number of us.

[firewatcher]

American Academy of Pediatrics response to Dr. Levine's study

Sorry, to stir the pudding again on this one, but the medical public is thinking exactly the same things that "we" are.

[TXPOTS]

Thank you for posting this, firewatcher. I could not agree more and am happy that the AAP recognizes POTS as a chronic condition with unknown, possible heterogeneous pathology. As an avid exerciser with high blood volume and POTS, I hope the researchers persist and research all angles. It would be a disservice to declare all of us deconditioned.

[ramakentesh]

"Sympathetic baroreflex sensitivity, as assessed by relating all sympathetic bursts occurring during the 20-s straining period of the Valsalva maneuver to the maximum fall in diastolic pressure, did not differ between patients and controls..."

Actually these results differ from nearly all published work on POTS. Sympathetic outflow is increased.

You will find that while exercise does help its for the reasons described in this pretty questionable study.