Nemechek Protocol for Autonomic Dysfunction

[dizzytizzy]

NemHi all,

I did a quick search and didn't see anything mentioned about this. Has anyone heard of/looked into/completed the Nemechek Protocol?It was created by an internist out in AZ.  He also had a protocol for Autism/ADD/ADHD, which he believes is caused by brain inflammation and ANS dysfunction. My understanding is he believes much of ANS dysfunction is caused by inflammation and the resulting damage to the nerves (if I'm interpreting his site correctly).

While he doesn't list the complete protocol online, he does offer his Autism/ADD/ADHD protocol for free. If the Nemechek Protocol is similar, then it sounds like it focuses on balancing the gut (i.e. eliminating SIBO) and increasing omega 3's through fish oil supplementation while also eliminating the use of omega 6 oils and using EVOO in its place. I've also read that he encourages high water/salt intake and the use of compression stockings.

I find this interesting because I have had chronically elevated CRP and hs-CRP tests, indicating there is systemic inflammation at play, though no one can really tell me why. 

Anyone familiar with it or think it's just wishful thinking? I'm actually on the fence on this one, because it sounds like he doesn't promote the use of lots of supplements or have his own supplement line where he can make tons of money off of it. I always side eye the docs who are making money off of the appt and supplements. 

[WinterSown]

I glanced at their front page and winced the moment I saw a TM after the name. If half a sentence in you get a mineMineMINE warning then caveat emptor. 

My primary always says with new treatments "We'll wait six months and if it hasn't killed anyone we'll wait six more, then you can try it. Maybe." Sage advice.  It sounds like you already know a lot of good ideas about nutrition and keeping yourself hydrated and healthy as best you can, you may be at the point where you are weaning off outside influences in how to care for yourself. I think it's awesome.

 

[DizzyGirls]

Mmmhmm.  Well said, WinterSown. 

[Lily]

Nevertheless, the Standard American Diet is known to have way too much omega 6 fats and not enough omega 3 fats.  Reducing consumption of omega 6 and increasing consumption of omega 3 will not hurt you that I ever heard of, and it does seem to be a dietary change about which (science-based) diet authorities all agree.  Start with eliminating industrial seed oils (soy, corn, canola, sunflower, peanut, etc. and products made with them) and use a high quality olive oil instead.  If this protocol also involves eating lots of vegetables, then that is a great idea, too.  Both these dietary changes should improve your health even if not your POTS.

[dizzytizzy]

Yeah, I'm not sure that this is the end-all, be-all for autonomic dysfunction treatment, but nothing that he advised seemed to be way "out there" or excessively expensive. It does seem to be a rather benign treatment plan with few if any potential side effects, especially considering the intense pharmaceuticals (with their own share of side effects) that many of us have taken or currently take. 

And as someone who has inflammation that needs to be addressed, this may provide some improvements. And if it does, I'll certainly take it. Living in a chronic state of inflammation can't be good. I'll update if I do a consult with him and/or attempt the protocol on my own. 

Here's a YouTube video about his research: 

 

[dizzytizzy]

Oh by the way, I've sent this info off to my PCP and EP. Curious to see what their takes are on it. 

[WinterSown]

Eating better, eating smart helps everyone. My cardiologist took me off of all supplements and told me to get it all from the foods I eat and drink. I started to feel better immediately--not months or weeks but within a few days I had a big boost in energy, better motility and less flares. When it comes to food simple is always better like having a baked spud out of the microwave instead of frozen curly fries out of the oven.  I make the effort to eat foods rich in electrolytes everyday and I take that ideology into the supermarket with me. I can spend four bucks on some cut up fruit or four bucks on crap--one of them is going to be better for me and I don't want to waste my money. 

[ks42]

I've actually looked into this a few times, as he is actually really close to where I live. He's been around here for a little awhile - I believe his practice popped up somewhere between 2010 and 2013 (approximately).

What I find intriguing (and possibly useful) about his approach: 

• He was trained by a Portuguese Autonomic research facility, which has a slightly different take on autonomic disorders than we do, but is apparently well known (I looked into the actual facility he studied at)
• He believes in a slightly different mechanism for autonomic dysfunction (parasympathetic dysfunction and weakening of the sympathetic nervous system, as opposed to sympathetic hyperactivity and the other mechanisms current doctors support). Not sure if good or bad or helpful, but definitely interesting.
• He has different tests available than at major autonomic centers (transcranial doppler sonograms to measure blood flow to the brain, spectral analysis). 
• He does vagus nerve stimulation (which they are currently studying somewhere now as a treatment for autonomic issues - I think maybe Vanderbilt or somewhere similar)? Personally, I think maybe it's great that he's using it, but I figure I might want to wait until the study results come out to see how vagus nerve stimulation works overall before I pay for a stimulator myself.

The reasons I have not yet made an appointment: 

• I've been on the exact diet he suggests since I originally developed autonomic dysfunction 4 years ago, and have never had a diet heavy in Omega-6's anyway. I did well for awhile but not sure if due to diet or what. I crashed really badly despite staying on this diet this past Jan and am not able to crawl out of that hole, no matter how good and how anti-inflammatory my diet is (I'm bedridden again). So if this diet is the main portion of his protocol, then I'm unlikely to benefit from it too much more than I already have.
• His spectral analysis testing utilizes valsalva, deep breathing, and stand tests, exactly what I've already had done at Mayo, so I don't necessarily want to pay for a version of it again
• He uses biofeedback, which I've also been doing for the past 4 years - through private practitioners, through Mayo, at home, etc, and haven't seen any benefit
• He doesn't accept insurance. Everything is out of pocket, and his consults are incredibly expensive - they are actually more than what my Mayo specialist charges for an out of pocket visit, so it's a lot for me to handle financially. There's a bigwig, sort of famous naturopath here who does pretty amazing work and charges half of what he does for a very comprehensive 2.5 hour office visit that includes some testing. I also assume if I want to do additional testing he recommends (like the transcranial doppler, autonomic function testing, etc) that might be an additional out of pocket expense on top of the consult. Though I think you're right - he doesn't seem to be selling supplements and things, so that's good. Though I assume you'd have to pay for a vagus nerve stimulation device, which is probably pretty pricey. So just not sure I can afford it. Might be able to save for one visit, but then follow ups would be out of the question financially. When he first started, he accepted Medicare (which I have) but just opted out of that this year

I'm still somewhat intrigued and, if I had the money, I'd probably at least go for one consult to see if he could find something different or recommend something that previous physicians haven't. However, since it's all out of pocket, I tend to be much more hesitant and skeptical. 

Also keep in mind - when I say things haven't worked for me - my doctors right now are re-considering the fact that my autonomic dysfunction might be due to something like an adrenal tumor or endocrine disease. If that's the case, what helps me / doesn't help me might be very different from what helps someone with a more primary / idiopathic case of POTS.

Edit: Also, I do agree with WinterSown - the TM does make my brain go hmmmmmm......

[AB+72]

Mayo Clinic uses biofeedback?  Where? 

[WinterSown]

What type of biofeedback? Do you mean physical therapy? Some of my doctors refer to PT as biofeedback. 

 

[ks42]

@AB+72Mayo Clinic in Arizona. It was offered to me as part of my treatment for POTS. They have biofeedback specialists & equipment there. I know that there is a program in the Minnesota one for kids that also uses some biofeedback as a way to help kids manage POTS and/or chronic pain, but not sure about adults (I've never been to that location).

@WinterSown No, this biofeedback in this case isn't PT. It's similar to (and is sometimes used interchangeably with) neurofeedback, if you've ever heard of that, although the two are subtly different. It was developed as a way to teach your body to voluntarily control some involuntary autonomic functions, like heart rate, bp, breathing. It was originally developed for psychiatric purposes (to help with PTSD, etc) but is now used in physical conditions as well. It's what they do at the POTS treatment center in Texas, if you've ever heard of that. They hook you up to a machine that reads HR, RR, and BP, and try to teach you to physically and mentally control it when it gets out of range. Mostly it's done through deep breathing or specific breathing patterns. Once you start to "accidentally" control your HR by something you've done (deep breathing) or thought about, etc, you see your HR drop on the screen and subconsciously your mind starts to figure out what actions it needs to take to control your heart rate, so it becomes easier and easier with less effort involved, until it's almost (but not quite) subconscious. There's a little more to the machinery they use than what I'm explaining, but I'd look up HeartMath (that's the portable one my practitioners have had me use at home) if you want more info. The equipment used in the office is much more sophisticated, however.

This thread has a more complete explanation of what it is (especially with regard to POTS) than what I've given: https://www.dinet.org/forums/topic/19178-biofeedback-as-a-treatment-option/?tab=comments#comment-176031

 

 It works really well for anxiety and PTSD, from what I've heard. I know Mayo has had some successes with it for POTS, too, but they warned me that it's more hit or miss with POTS, and is used more as a coping mechanism / adjunctive treatment - definitely not a cure. But if any of your POTS symptoms are triggered by stress or anxiety, I'm guessing it would probably be really helpful for that.

It didn't work for me at all because my symptoms are just too severe, and they're driven by pretty hefty (and frequent) releases of adrenaline that no amount of mind-body training can seem to control. Oddly, I find more benefit from a specific adrenal yoga program that's designed to activate the parasympathetic nervous system, balance breathing and HR, and reduce overactivity of the sympathetic, reducing adrenal output of adrenaline. 

[WinterSown]

Thank you, I've never heard of neurofeedback or anything you described 😉

[dizzytizzy]

@ks42 Thanks for breaking down your thoughts on this and I'm sorry to hear you're in a flare. I agree about the fee schedule being very high. We have a doc turned direct primary care/holistic here locally and his fee schedule used to be somewhat reasonable, but has grown with his popularity. I mean, I somewhat get it - supply and demand and all - but there's also an ethical component that is missing (in general) from medicine today where it prices people out of the market, usually those most in need. Preaching to the choir here, I'm sure 😉

If my sister stilled lived in Tucson, then I'd probably at least try out an in-person visit with him since I wouldn't have to pay for lodging/food. But to pay for the visit, the flight, lodging, food, etc. after already paying thousands this year for medical needs, we just can't swing it. I have downloaded his book and am looking that over and may try the Skype option he offers just to gather more info. 

My PCP wants me to head to Cleveland to do the full autonomic testing as well as consult with neuro and rheum due to the wide range of issues/symptoms I've accumulated over the years. The EP here doesn't do any of the testing like that as he seems to follow Dr. Grubb's thoughts on that (who I've been told no longer does the extensive autonomic testing either). The EP doesn't call my issue POTS - he just says autonomic dysfunction and/or blood pressure dysregulation. As you all have often experienced, it's frustrating to not know what "caused" it all and that's where I'm at now. Because I've never been textbook medical, I'm afraid they're overlooking something as is my PCP, hence the referrals to Cleveland Clinic. 

@ks42 Do you mind sharing where I can find more info on the adrenal yoga program? I seem to have problems with excess adrenaline and sometimes get surges at night.

[ks42]

@dizzytizzy You're very welcome. Yes, I agree with you that the ethical component seems to be missing these days in a lot of areas. I would like to think if I were a doctor who had a program that was actually curing people of this horrific thing, I'd certainly need to make money, but might at least try a sliding scale fee schedule based on income to make sure those who can't afford it could get access as well. Then again, running an office is expensive, so... who knows what might actually be possible or not?

I've heard Cleveland is fantastic. I get it - it's incredibly frustrating not to know what caused it. In my case, we kind of need to find the cause, because that's probably what will allow us to treat this properly, as I've really never responded to typical POTS meds (and the things that make me feel better should in theory make POTS worse). If Cleveland program is like Mayo, though, then they might do a ton of bloodwork and other testing (they did autoimmune, paraneoplastic, some endocrine, mast cell, and mitochondrial panels on me when I went in for the complete autonomic testing at Mayo. So there's a chance you can discover a cause that way. I unfortunately didn't, but other people sometimes do).

I'll PM you the info on the adrenal yoga program.

[AB+72]

It is the downside to a capitolist society.  People charge as much as they can.   It crosses a line of what is acceptable and moral and fair, IMHO.   I'm not saying socialism is better.  I think it's worse.   If everyone in a capitolistic society charged a fair price and thought about their customers abilities, it would be better.  But many times, it's just about how much someone can make.   Which has it's upsides.  They can grow, employ more people, put more money back into the economy and also give generously to charities.  But from my estimation it's usually at the detriment of the 80% of people struggling to make ends meet.   And people with health problems might not even be making ends meet.  So.......  It's a messed up system if you ask me.