Personal Account of the Six Pillars of Health

EDITORIAL:
MY PATH TO RECOVERY – IMPLEMENTING THE SIX PILLARS OF MITOCHONDRIAL HEALTH:

At the time of writing this, it had taken me three years to get to where I am now. (I started “MY” treatment protocols in support of my Mitochondria in June 2012.) I do not consider myself cured, but well managed. I still have hiccups along the way; however, I have come a long way. I was practically bedridden for a year and as I progressively got worse, I honestly thought I was going to die before anyone could even figure out what was wrong with me. Now I feel like I’m finally getting my life back. When I started to turn the corner, it was hard not to get too excited too soon and overdo things. But the more I understood my limits and assisted my body in reducing the load with a focus on doing as much as I could within my limits, the more improvements I saw in my functional state.

The Six Pillars of Mito Health were crucial to my recovery process and are the basis of why I pursued creation of this site:

The FIRST corner was turned through MAJOR energy conservation techniques. Physically (do only what is absolutely necessary), emotionally (stress really does kill and drama will suck the life force right out of you), and mentally (your brain uses more energy than most everything else in the body absent the heart). Basically, I was a workaholic having to learn to be what I considered “lazy,” but I could only afford to do the bare minimum everyday.

SECOND, dietary changes, supplementation and proper hydration. I have had great improvements limiting gluten, simple sugars, high carb foods/meals and processed foods. Dr. Lonsdale said, “We are the most overfed, malnourished society on earth.” Our food, whatever isn’t fake, chemicalized garbage, is high in carbohydrates and calories and has little to no true nutritional value. And inaccurate dietary information perpetuated dietary blunders such as low fat diets, which also denied us of essential healthy fats that are necessary for proper heart, brain and liver function. So although a majority of the population is overweight, they don’t have the simple nutrients necessary to sustain a disease-free existence. Sufficient nutrients are essential to proper function; therefore, supplementation is appropriate to fill in nutritional gaps not able to be addressed through diet alone. I have done my research on what to take, when to take it, what to take it with and what to avoid when taking it. As part of energy conservation, I also did research in regards to the better form of supplements that don’t require the body to work to convert the substance before use. Some of this can’t be avoided, but I did so where I could. For the most part, I have had to make educated guesses on how much to take. I have been fortunate enough to have a Primary Care Manager that has been more than willing to do frequent labs so I can tweak my personal requirements and keep an eye on things.

THIRD, detoxification can help to remove toxins that impair proper function and can actually hinder recovery efforts.

FORTH, sufficient sleep, resting between activities and even one or more naps during the day may be necessary to give the body time to adequately rejuvenate. Sleep is when the body heals the most, helps regulate hormones and strengthens the immune system.

FIFTH, exercise as much as possible without overdoing it. Mito experts now advocate for physical therapy to be part of any treatment program, regardless of the form of Mito dysfunction; as much physical activity as can be tolerated. Not just to fight progressive deconditioning that works to accelerate dysfunction, but because skeletal muscle is capable of complete regeneration, not from dividing cells, but from muscle and non-muscle stem cells that are more likely to contain healthier functioning Mitos.

SIXTH, utilization of complementary therapy options to address other issues. I specifically used chiropractic care, massage therapy, InterX neurostimulation and HBOT to aid in achieving an ever improving level of my personal optimal best. In regard to adding HBOT, read both the HBOT page and the HBOT editorial for more information.

 

DISCLAIMER:  Before beginning any new exercise, nutrition or dietary supplement program you should first consult with a licensed health care professional. The information presented herein is for informational purposes only and is not meant to diagnose, treat or prevent any disease or to provide the reader with medical advice. If you are seeking specific medical advice, you should consult with a licensed health care professional.

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Is There Such A Thing As Too Much Oxygen?

In addressing the title of this website, “Oxygen Oasis,” one reader posed a concern, “Too much oxygen causes rust –ever hear of antioxidants?”  Improperly administration of oxygen can produce a condition called oxygen toxicity.  However, absent this extremely rare and easily avoidable scenario, an excess presence of oxygen is not of issue.

It is important to understand that unused oxygen is free floating oxygen that has not reacted in a chemical process.  Oxidation occurs when oxygen is “utilized” to create ATP-energy.  This oxidation is a natural and necessary by-product of aerobic metabolism.  In proper balance, ROS actually serve the beneficial role of both intra- and intercellular messengers.

Definitions:  Oxidation is the process that causes Reactive Oxygen Species (ROS) or free radicals.  Oxidative stress refers to the impact ROS has in the body.  Oxidation is sometimes analogized to the creation of rust via chemical reactions that oxidize substances.

The body has mechanisms to overcome oxidation.  Antioxidants.  Though certain nutrients and supplements can contribute to antioxidant action, the body is capable of producing our most powerful antioxidants called Superoxide Dismutase (SOD).  As we age, the body begins to produce fewer SOD resulting in a buildup of reactive oxygen species.  However, research has found that a protein referred to as Nrf2 stimulates the gene responsible for producing SOD.  Using Nrf2 activating products to increase SOD is currently the source of major research focused on ameliorating a great majority of disease processes including Mito, MS, Cancer… and the list goes on.

When it comes to oxidation, It’s all about support and balance.  Without oxygen spent (oxidation), we would not generate sufficient ATP.  Poor ATP production is the core of an ever increasing list of disorders being linked as Mito related illnesses.  Without sufficient ATP, the body can’t function properly, including compensating for oxidative load which leads to further negative consequences.

This is where doctor’s jump the gun and get it wrong.  They say, “too much oxygen is bad; it causes oxidative damage.  We must limit the occurrence of oxidation.”  This is ignoring the fact that anything limiting the process of oxidation also limits ATP production, the vital energy required to support proper function.  The goal MUST BE to support the natural mechanisms that create energy and simultaneously compensate for the oxidation that naturally occurs.

When you burn fuel, you will have exhaust (oxidation).  But you can effect how much exhaust by burning more efficient fuel (healthier food options), by providing essential nutrients (supplementation), by avoiding toxins and by other means of supporting optimal function.

It works.  I’m living it, along with several others.  And the doctors keep scratching their heads wondering why I’m getting better results than they are.

The “What are Mitochondria” page explains the process of cellular respiration and the end process that results in both the most effective creation of ATP and where oxidation occurs.  The “Supplementation” page addresses antioxidants and the Editorial on Hyperbarics also covers the necessity of addressing oxidation.

Furthermore, Nrf2 activators that stimulate the NFE2L2 gene to produce more SOD are becoming a viable treatment option to address diseases associated with excessive oxidative stress and to protect against oxidative damage triggered by injury and inflammation.  The most studied, non-prescription form is Protandim.

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Hyperbarics: What is the True Danger

Editorial:

You should have seen the doctor presenting the “Treatments” section at the St. Petersburg, FL, Mito Symposium in December 2014, when I asked about research regarding HBOT. You’d think I shot someone. She was very immediately opposed and said, “I know patients that have gone into a hyperbaric chamber and died!” Yes, she was pretty much exclaiming it into the microphone. That comment was followed by her insistence that she was sure there wasn’t a single doctor on the panel that would advocate for its use. Having attended the entire day of Continuing Medical Education seminars that day, these are the issues I have regarding her stance.

First, I wasn’t just asking about HBOT because I was curious. I was pressing the issue because I am a Mito patient that went into a hyperbaric chamber and not only survived it, but survived it over 200 times over the course of several years. I also know that, at least for me, HBOT has been an integral part of my overall condition improvement and my positive response has been reproduced multiple times, having returned to the chamber for what we fondly started to refer to as “tune ups” if my condition became worse again. So in posing the question to the experts, I wasn’t perpetuating some theory. I have and continue to live the benefits of hyperbarics.

Second, during an earlier session the experts were discussing “some” of the precursors (vitamins, minerals, amino acids & essential fatty acids and other precursors our body creates from these substances) necessary for proper Mito function (during the respiratory chain / Krebs cycle / Electron Transport Chain). But at the end of this session, this same doctor stressed how irresponsible it would be for doctors to encourage their patients to supplement and that they HIGHLY DISCOURAGED such practices because there is “NO SCIENTIFIC EVIDENCE to support that supplementation is beneficial.” I’m glad a doctor got up to ask about this position because it made me feel a little better that I wasn’t the only one absolutely baffled that they actually wanted to DISCOURAGE supplementation. The doctor’s question: “If it won’t hurt (which is the key), then why not provide the things we know SCIENTIFICALLY the body needs for these processes?” At a minimum, they DO know scientifically that if these substances are not present in sufficient amounts, these vitally important processes simply cannot occur.

Third, in the Research session, they discussed several logistical issues that hinder further research and clinical trials including:

1. Limited research centers performing necessary studies
2. The shear number of different forms of Mito and issues with accurate testing to identify / confirm specific forms of Mito disorders for proper patient grouping
3. Until the Mito Patient Database was launched, there was no way to identify patients that met the criteria for individual studies to assist in populating studies
4. There was significant concern about patients using supplements because of a “PERCEIVED BENEFIT” that is so strong, patients are not willing to give up taking the supplements in order to participate in a study; even a study regarding supplements, because of the risk of being selected to be in the placebo group and have to go without their supplements due to their “PERCEIVED BENEFITS.”

So if perceived benefit of one or more supplements is such a major issue, shouldn’t that count for something? Perceived benefit is solely and directly attributed to an immeasurable and subjective aspect of what a patient reports. However, if functional ability is improved, this is something that can objectively be measured by the patient’s medical team. I know this type of information doesn’t rise to the level of “research” necessary to make claims, but it is certainly circumstantial evidence that we, as struggling patients, are basically being told to ignore. Actually, even worse, we are never told of these potential benefits so we don’t even know we have options unless we find it own our own. Then we face being chastised by doctors for our “desperation” to try unproven “so-called remedies.” Unfortunately for them, their bias does not go unnoticed; they have clinical trials of future pharmaceuticals to populate. I understand a balance must be struck. After all, who wouldn’t want a cure for their disease? But as the questioning doctor put it, “If it won’t hurt, what is wrong with saying we don’t know definitively if this will work, but there is a chance it could help.”

This is the actual quote from a presenting physician at that symposium (video below):
“One of the problems is, how… who’s going to fund these studies? If we are actually going to go back and do a randomized, controlled trial using vitamins, who is going to fund that? This is not big industry, right; these aren’t drug companies, so it’s going to be a little challenging to do this. Someone asked about Peter Stacpoole’s trial with CoQ10 and I don’t know where that stands right now. There was a pending [inaudible] trial [inaudible] patients with Mitochondrial disease, looking at CoQ10, and it was placebo controlled trial. And they had a lot of trouble recruiting for that trial because a lot of patients were on CoQ10 and they did not want to come off and risk being put in the placebo group. Right, this is just a challenge in general trying to get patients in clinical trials. No one wants to be on placebo. Why would you do that if you can, you know, keep buying the drug from your Walgreens, right, if you’re on CoQ.”

 

Fourth, as for the patients that died in hyperbarics, HBOT is generally safe for most anyone; absent someone doing something significantly wrong during the administration of the dive (like failing to determine a patient had one of only a few rare disorders in which HBOT is contraindicated, or diabetics not being closely monitored to prevent blood glucose from falling too low, etc.).

Specifically relating to the Mito patients who died during administration of HBOT, I asked on the next break regarding autopsy findings. I was told it was “a couple of patients” but that they were not her patients and thus she did not know any particulars regarding their cases. Applying what I know about Mitochondrial Dysfunction and how HBOT effects the body, and including what I learned are standard practices with Mito patients, I have my theory on potentially what went wrong in the “couple” of Mito/HBOT deaths:

(1) they were not having these patients supplement (because the doctors are not encouraging it, and especially not to the level that I take…. See the “Supplementation.”
(2) The other totally necessary element would have to be that these patients were likely in a full energy crisis. You have to understand the full circle of ATP/energy production and what happens when that process fails. Check out: The Medical Insider: Mitochondrial / Metabolic Dysfunction and scroll down to the section: “Inefficient Recycling of ADP back to ATP, and AMP Production.” You will see that when you get to the point of running mostly off AMP (an energy crisis state), the body has to make more ATP “from scratch” requiring all those supplements that these doctors fully acknowledge are necessary to proper Mito function, but yet they don’t encourage their patients to use.

In regards to supplementation, this is where I get frustrated with what they require as “scientific evidence sufficient to substantiate use” and circumstantial evidence that is more than sufficient to build a very solid case based on facts. At a minimum, scientifically they know we each need all of these different substances (supplements) in order for the body to function. So in that regard, there IS scientific evidence to substantiate that the body needs these nutrients. We might not yet comprehend the full extent of how the body uses these nutrients or understand in what amounts, etc.; but then again, no one is really looking into that because, as the doctor referenced, there is no money in supplements to effectuate the necessary research.

One must also keep in mind the nature of HBOT; it speeds metabolism and, even though only researched in mostly dog models, substantially increases the production of ATP. Dogs aside, this is why my HBOT doctors theorized how my condition was improving when I was finally diagnosed with a Mitochondrial / metabolic disorder. (It is only a theory because there is no human research to confirm it… only research using dogs. But then again, there was me… Woof! All joking aside, they duplicated results time and again over the course of 136 dives during my first year of treatment at that facility. They talked of writing a case study paper regarding their observations, but as far as I know it never occurred.)

THE TRUE DANGER FOR MITO

Consider your body is a car capable of producing your own fuel simply by running your engine; having provided all the necessary raw materials (nutrients). In effect, that is exactly what we do every moment we are alive. Here is the dangerous part. If you are in a full fledge energy crisis, running mostly on the AMP process, you are basically digging yourself a hole because in that state you are using more ATP than is being produced. With no raw materials necessary to generate new ATP as is required in an AMP-energy crisis state, eventually you run out of ATP. If you run out of ATP, you die. So to put someone who is in an energy crisis into a hyperbaric chamber is like putting their car on a racetrack with no resources to generate more fuel and then telling them to go as fast as they can. As they are revving their engine, they will inevitably run out of gas because the raw materials necessary to make more fuel are simply unavailable. So my best, self-educated GUESS is that they put their patients in the chamber in a highly impaired state with no resources to overcome the situation and then increased their energy demand to the point of complete exhaustion of ATP… to the point of death. In effect, they were relying on one thing, hyperbarics, that in theory was supposed to improve the patient’s condition. However, they failed to ensure they were addressing everything involved in the process (level of energy crisis, proper supplementation, reactive oxygen species mediation, etc.).

You can’t live without producing and using ATP. So if hyperbarics, IN THE PRESENCE OF ALL NECESSARY RESOURCES, increases the production of ATP, then it would logically follow that hyperbarics would improve a patient’s functional state, not diminish it. If there were a link broken that prevented ATP production at all, frankly those “couple of patients” the doctor referred to already had one foot in the grave before they ever stepped their other foot inside a hyperbaric chamber.

OTHER CONSIDERATIONS

Reactive Oxygen Species / Free Radicals / Oxidative Stress

As with everything having to do with our beautifully complex bodies, there is nothing simple about how they work. The very process of creating ATP utilizes oxygen and the bi-product of this essential function creates Reactive Oxygen Species (ROS). At the symposium, the experts discussed that steps had to be taken to reduce the production of ROS because ROS were capable of causing further damage to Mito function. This is one case where addressing the source of the problem is a bad idea. Although ROS can be damaging to Mitos, the problem can’t be addressed through limiting the burning of oxygen because that would decrease ATP production; and ATP production is cyclic, it takes ATP to make ATP. This is simply how the body works in order to supply the necessary energy to stay alive and there is no way of altering this process. However, the body does have its own way of addressing these ROS through the use of both externally consumed and internally generated antioxidants. Therefore, antioxidant therapy, capable of scavenging and mediating the potential negative effects of ROS is the natural and intended way of addressing free radicals.

HBOT delivers more oxygen to cells and the Mitos increase the utilization of this oxygen; which naturally increases ROS, or in other words, oxidative stress. But if this effect is balanced through antioxidant therapy, the net gain is less oxidative stress on Mitos and more ATP-energy that can be used to help repair and heal. Think of ROS as smoke or exhaust coming from the car’s engine. The worse Mitos function, the more ROS (or exhaust) is produced in the process. The more efficient Mitos work, the less ROS are generated.

This also implicates diet as certain foods are known to “burn” cleaner and result in less ROS. But just as pouring sugar in your car’s gas tank can lead to impaired performance and black exhaust from your tailpipe, processed foods, simple sugars and high glycemic carbohydrates also bog down Mito function and generate more ROS when used in metabolic processes.

Antibiotic Effect of HBOT

HBOT also kills bacteria, which, like antibiotics, can include the good bacteria in your gut. This also has to be balanced through supplementation. This is easily accomplished through consumption of probiotic rich foods like pickles, sauerkraut, kimchi and other fermented vegetables; yogurt, kefir, poi, miso soup, and microalgae powder. If diving frequently, and especially if GI upset occurs, use of a potent, high quantity, multi-strain, refrigerated form of probiotic should be considered. As the effects of HBOT can persist up to two hours after each dive, consumption of probiotics should done immediately after this two-hour window, when oxygen levels have normalized.

ANOTHER HYPOTHESIS

Now onto the cutting edge stuff…. Mitochondrial DNA Repair Rate. Until the summer of 2013, I didn’t even know this existed. I stumbled upon it while looking up the closest Mito doctor to where I was moving to… my hometown of Mobile, AL. Also home to the University of South Alabama, this is where “in collaboration with Dr. Glenn Wilson, Dr. LeDoux’s laboratory was the first to discover that base excision DNA repair occurs within mitochondria.” Can you imagine my amazement that in my little old hometown, they were on the cutting edge of THIS? After failing to find useful contact info for the department, one day I walked into the office of the Dept Head of Cellular Biology and ended up spending two hours with the very gracious and patient Dr. Wilson. This is where I learned about all of their research and, unfortunately, it wasn’t any dealing with my specific issue. However, he told me of studies looking specifically at ways to increase Mito DNA Repair Rate or Repair Capacity. One of which was amazingly simple…. Vitamin B3. I can’t find the article I located back then (kicking myself, it was specifically referring to a study on a synthetic form of B3 being used to increase Mito DNA repair rate), but check out this medical journal: Role of Nicotinamide in DNA Damage, Mutagenesis, and DNA Repair, especially from Section 5 and below. It is very technical, but it starts explaining how B3 (Niacin) reduces DNA damage and increases NAD+ levels in the cell stimulating DNA repair.

More of my theories… HBOT increases all metabolic processes. So, again, giving your body all the raw materials needed, it is possible that HBOT could also increase Mito DNA repair rate; both from the very nature of increased metabolism, but also that I am sending in much more B3 to become NAD+ that can find damaged DNA and initiate repair of that damage. It’s just a theory, but you have to start somewhere.

FINAL THOUGHTS ON HBOT

Nothing is “easy,” but balance can be achieved if you educate yourself on all the aspects involved. The goal should always be to get the body functioning well enough that balance returns on as many levels as possible. Over time and by utilizing the two-hour window of full oxygenation, HBOT also allowed me enough energy to start working out again and overcoming the massive deconditioning I had acquired. I feel that HBOT was an excellent complementary therapy to the other Pillars of Mito Health that I implemented in order to achieve my personal results. The better we are functioning, the more balance we will gain, the better we will feel, and the more results we will eventually be able to achieve.

Bottomline: I want to reiterate that HBOT is generally safe for most everyone. Absent a specific contraindication, if administered appropriately, HBOT should pose little to no risk of harm. Though HBOT is not without risk for Mito patients, that risk can be minimized to practically non-existent if HBOT is administered appropriately and by using a complete approach that deals with all aspects of the patient’s condition and the effects of the treatment itself.

Diabetes (also a form of Mito dysfunction) is a perfect example. If you put a diabetic in the chamber, the effect of speeding metabolic rate can cause an unsafe drop in blood glucose levels capable of causing death, even two hours after the treatment because the metabolic effects persist that long. However, monitored properly and providing those things necessary to mediate this effect, HBOT is not only safe for diabetics, a large majority of “on-label” uses of HBOT include treating complications of the condition of diabetes.

MY PERSONAL HYPERBARIC EXPERIENCE:

I acknowledge that I am obviously biased on this subject, having had such a positive experience that I consider nothing short of a miracle. However, I am not so blinded by my own experience to think that hyperbarics is a cure-all or that it is right for everyone in every situation. I tell my story to educate and to inspire. Each person needs to do their own research and decide for themselves the benefits and/or risks of any potential treatment option. Hyperbarics is no different.

Although one doctor heavily advocated for high-dose, non-caloric nutritional IVs and HBOT during my first year of symptoms when I was diagnosed merely as multiple forms of autonomic dysfunction (dysautonomia), no one supported his recommendation. As a matter of fact, he was dismissed from my case after making that recommendation. I found no research supporting the use of HBOT for dysautonomia. A year later, when the UC Davis doctor said my dysautonmia was due to a Mitochondrial and/or metabolic issue, I did find generalized information about how HBOT increases oxygen utilization and thus cellular/metabolic function. My military base had a HYPObaric unit, for U2 pilot training and I was friends with the commander (who had previously worked at a HYPERbaric unit). I met and discussed with him my theories on my reduced oxygen utilization and lactic acidosis and how HBOT worked in general. He was intrigued by my research and thought there was a possibility that HBOT could help me. In attempting to pursue HBOT treatment, my issue was that I had no approved condition to request even a referral for evaluation.

At this point, I truly believe God stepped in and answered my prayers. I fell and ripped a tendon in my left wrist. Following surgery, I developed Complex Regional Pain Syndrome (CRPS); yet another form of dysautonomia. I could not tolerate the medication they prescribed and nerve blocks failed to provide any lasting effects. Desperate to alleviate the pain, I found research on successful clinical trials using HBOT for CRPS, specifically of the wrist. It took me two months and three of my doctors before my puImonologist agreed to write me a referral. His reasoning, he had a diabetic patient that went for HBOT of an approved use and came back with unexplained improvements of a variety of other health issues. I was sent to a military HBOT unit to undergo initial evaluation. The HBOT doctors were willing to accept me as their first research patient for CRPS, if I was willing to take the risk; they didn’t know whether it would make my dysautonomia better or worse.

But on day ONE, I walked out of the chamber feeling normal for the first time in many years. I was thinking clearly, I wasn’t dizzy or disoriented, I wasn’t feeling like I was going to pass out while standing up…. I just felt great. One of the doctors checked me out and my heart rate, blood pressure and body temperature had all stabilized. I got excited; I can’t tell you how excited. I thought I had just experienced a straight up miracle. One doctor had to break the news…. it wasn’t going to last. I was told if it happened that quickly, it was simply an effect of full oxygenation of my system and the effects would completely dissipate over the next two hours and I would likely return to my destabilized condition. I remember, jokingly of course, sticking my fingers in my ears and saying, “la, la, la, la, la, la.” Who wants to hear their miraculous recovery was only temporary?

But the doctor was accurate in his assessment. I ran out of energy again, just as he had predicted, in about 2 hours. But the more consecutive dives that I did, the better my baseline improved. I had lost most of my nerve response to heat and cold (causing severe heat and cold intolerance to even minor changes in temperature) and was unable to sweat and had issues maintaining body temperature. The first improvements I noticed in this area were between 35 to 40 dives when I began to sweat ever so slightly. I realized while in occupational therapy for my wrist, that I was able to accomplish more therapy with less pain during appointments immediately following my dives (in the two hour window of full oxygenation). I started using this “window of opportunity” to start doing other physical activities to fight deconditioning and build muscle tone back that I had significantly lost over the last several years of being so sick and weak. By the time I left the Air Force, I had received 136 dives over the course of a year. I had been able to use those HBOT treatments as adjunct therapy that vastly improved my immediate functional capacity which equated to more sustained functional capacity over time.

Nearly 8 months after leaving the military and returning to Alabama, I hit a wall and slipped big time. Looking back, it was a combination of attempting to do too much at one time and being hit with a stomach virus that totally wiped me out. I attempted to rest as much as I could, but I was not overcoming the symptoms of my energy crisis. I knew I needed HBOT so I took to the internet in search of a HBOT facility. To my surprise, a doctor in town had just opened two HBOT chambers. With my mother threatening to take me to the ER, I walked into his office, (more like stumbled in because I could barely stand), and handed him my medical records. He was intrigued and agreed to dive me because he said otherwise I just needed to go to the hospital; and frankly he wanted to know what would happen. They were rolling me around in a wheelchair for me to get changed and ready for the dive. They had to have two people lift me to the bed to get me into the chamber. 90 minutes later at 100% oxygen at 2.0 atmospheric pressures, they pulled me out and I hopped down and started across the room to get my clothes to change. The doctor and the safety director were looking at me with sheer astonishment on their faces, their jaws dropped and their eyes wide. One of them asked the other, “Is that the same person we just put in the tube?” I did approximately 30 dives at that time to assist in my recovery from that energy crisis. I continue to receive HBOT treatments on an as needed basis, which thankfully are few and far between.

I CAN NOT say HBOT is for everyone. That would require all that research the medical community requires and unfortunately, that will never happen… there’s no money in doing so. I CAN say I consider myself truly blessed that I fell and ripped my tendon and developed a nerve condition that led to my opportunity to do HBOT. Otherwise, I would have never qualified to walk into that chamber, ever. I WANT realistic information to be available so that other people can do their own research and determine for themselves what their particular benefits and/or risks may be. But AGAIN, it is a total package… I KNOW you have to take a total approach to give your body the best fighting chance to function optimally. I also BELIEVE that HBOT may be an excellent way to supplement those efforts.

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Symptom Overload

EDITORIAL:

More Symptoms Than Doctors Know What To Do With…
A Theory About Unexplained Symptoms and Mitochondrial Dysfunction

I sent an email to Walter Reed trying to make the case that my UC Davis doctor’s theory of a Mitochondrial and/or Metabolic Disorder was causing all of my symptoms, from my major diagnoses of Postural Orthostatic Tachycardia Syndrome, Chronic Fatigue/Fibromyagia, Impaired Sweat Response, Complex Regional Pain Syndrome and my high urine volume and low Aldosterone… even my sensitivity to light, sounds and smells… all those pesky little symptoms no one seemed to care about.

This intro paragraph is full of analogies. Maybe one day I’ll get it sorted out better, but bear with me; I think you will get the jest. I was originally diagnosed with autonomic dysfunction; then several forms of it, and then some more. I joked I was collecting symptoms and disorders like a kid would collect stamps. From what I was being told, my concept of the Autonomic Nervous System was that of a huge switch board with thousands of little switches; more like fuses that could get tripped. If one switch got flipped “off” then you developed a symptom. But as the body tried to work around that symptom and to mediate the dysfunction, other switches (or systems) would get overloaded, triggering those switches to get flipped too. As a broader view, the whole body acts as a series of connected circuits all interdependent on sufficient energy being pushed down the line. Some short-circuits occur because there simply isn’t enough energy to go as far (or do as much) as needs to be done, so a switch gets flipped (like redirecting train tracks) to avoid less necessary functions so energy can be conserved for more critical functions (sometimes to the point of just trying to stay alive). Less train tracks, less resistance, less energy being sucked up by non-critical functions along the way, more energy to attempt to recuperate. Ultimately, everything happening is the body’s way of trying to reduce load, improve function, heal and return to a neutral point (homeostasis). This email really became my overall theory that after many more years of study, for the most part, I am pretty sure I was right on the money.

Obviously this is a simplistic view of a very complex system (really a complex system of many different complex systems). But I think it can help explain a lot for folks suffering with so many things going wrong all at once or consecutively over time. Once you can recognize the cycle of your disease (knowledge), you can start to see places where you can interrupt the cycle and help your body as it tries to give you the best health that it can offer you. After all, balancing out huge swings that can send you into energy crises is so much easier that trying to recover from the day to day struggles of Mito.

The following is an excerpt from an email I am writing to one of my doctors. I do reference some personal stuff (tests, ect.). But it was this email that led to them finally seeing how all of “MY DOTS” really did fit together under one disease process, verses an otherwise very healthy person suddenly having more diagnoses than any one person could possibly live with… and to see that giving me a prescription for each symptom was ultimately not addressing the underlying issue and was only going to work to make things worse.
So with that being said, here is my theory:

My various conditions have significantly limited definitive testing and most testing I have already undergone has either turned out “normal” or with inconclusive or unexplained results. My high lactic acid, low aldosterone, high urine output and through the roof norepinephrine levels being only some of those. But based on what we do know, I have a theory:

If there were an end-process metabolic dysfunction impairing proper ATP production(either through a lack of oxygenation or, for me, what appears to be lack of ATP production despite proper oxygenation,as suggested by UC Davis Sports Medicine), this could decrease the metabolic acidosis threshold, even with mild activity (as seen on the ABG from the Cardio-Pulmonary Stress Test from February 2011). This could indicate impaired aerobic functioning, causing a quicker-than-normal shift to the anaerobic process which would decrease pH levels as metabolic acidosis persists. The body should respond to mediate the high acid level. Since 75% of acid-base buffering occurs through renal function, this could explain the isolated low Aldosterone, as the body works to flush the excess hydrogen ions through the urine to contribute to increased alkalinity. Since anaerobic functioning is far less efficient, any increased demand on cellular activity could trigger the symptoms associated with extreme exercise intolerance (fatigue, muscle cramps,tremors/multiple muscular shaking, breathlessness/air gasping, brain fog and activity induced syncope), by further reducing appropriate oxygen utilization and taxing an already compromised ATP process.

In this regard, low Aldosterone would be the mechanism of mediation of increased acidity verses a disorder. Unfortunately, along with the hydrogen ions, the body also flushes salts and fluid which can lower blood volume and either cause or exacerbate the presentation of POTS symptoms. Furthermore, water soluble vitamins / minerals / electrolytes are also excreted which can negatively affect multiple body systems dependent on such substances and cause additional impairment of the ATP process through absent or ineffective coenzymes. This would compound the problem of diminished available energy required for proper functioning, including the biggest consumer of energy, the brain; hence, the Autonomic Dysfunctions.

Over time, the effect can appear degenerative as the multiple systems struggle to find work-arounds in an effort to maintain homeostasis. The work-arounds, though fixing an immediate problem, end up, in effect, short circuiting other systems, triggering other symptoms that appear to be completely unrelated and otherwise have no clinical explanation (e.g. tests appear normal so there is no explanation for why that symptom exists).

The natural response of“Fight or Flight” that occurs when the body senses danger can also account for a number of less critical, yet still annoying symptoms that appear to be unrelated. As blood flow and energy are redirected to “essential” body functions, other less critical systems decline in function or can practically shut down. Other systems achieve a heightened state. Absent true “danger” that can be escaped through fight or flight, the person is left with an energy drain from the soaring hormones and the physiologic response to them, decreased function in some body systems (GI, small-task brain function and memory, body temperature control, etc.), while other body systems are in overload (sensitivity to light, sound, smells,etc. – the increased alertness/awareness). These symptoms triggered by fight or flight, absent an emergency that can be cognitively/consciously recognized (you can’t really “tell” what your body knows is wrong), can also appear as anxiety and/or panic attacks.

That ends the excerpt from the email. I am including the following as an overview of fight or flight… because I determined that a lot of my “symptoms” were being triggered due to existing in a near constant state of fight or flight. When the UC Davis doctor explained this to me, it was a very big “AH HA” moment that helped to put me a little more at ease; that is, to know that there really wasn’t that much wrong with me. I was merely experiences several symptoms of fight or flight.

Triggering the sympathetic nervous system causes the sudden flood of epinephrine, norepinephrine and dozens of other hormones that cause changes in the body that include:

  • heart rate and blood pressure increase
  • pupils dilate to take in as much light as possible (light sensitivity)
  • increased sensitivity to sounds and smells (overall increased alertness)
  • veins in skin constrict to send more blood to major muscle groups (responsible for the “chill” sometimes associated with fear — less blood in the skin to keep it warm)
  • blood-glucose level increases
  • muscles tense up, energized by adrenaline and glucose (responsible for goose bumps — when tiny muscles attached to each hair on surface of skin tense up, the hairs are forced upright, pulling skin with them)
  • smooth muscle relaxes in order to allow more oxygen into the lungs
  • nonessential systems (like digestion and immune system shut down to allow more energy for emergency functions
  • trouble focusing on small tasks (brain is directed to focus only on big picture in order to determine where threat is coming from)

­All of these physical responses are intended to help you survive a dangerous situation by preparing you to either fight for your life or run for your life (hence the term “fight or flight”).

If you are experience symptoms that could be associated with fight or flight, it is important to evaluate what could potentially be triggering such an effect. For Mito patients, it could be a sign that an energy crisis is near.

CALMING SYMPTOMS ASSOCIATED WITH FIGHT OR FLIGHT

If you are in the midst of an energy crisis, resolving the associated symptoms won’t be quick or easy. However, those symptoms can be perpetuated as you expend more energy stressing over the impact those symptoms are having on your life. One way to help interrupt symptoms associated with fight or flight is to trigger the the parasympathetic nervous system, (the one in control when your sympathetic “fight or flight” nervous system isn’t kicked into overdrive).

Exercise and meditation are excellent ways to reduce stress, but aren’t always readily possible. The technique of slow, focused, deep/relaxing breathing (in through the nose, hold, then out through the mouth in a 4-7-8 ratio) can be done anywhere at anytime and has been shown to calm the sympathetic nervous system. It also works to improve oxygenation of the body and reduce stress. So when symptoms begin to spiral out of control, don’t forget to breath.

Click here to watch Dr. Andrew Weil demonstrate the proper technique for the 4-7-8 relaxing breath and discuss its many benefits (3 min, 18 sec).

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