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.
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.
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.