Hyperbaric Oxygen Therapy use in Mito Patients
Use of Hyperbaric Oxygen Therapy (HBOT) in patients with mitochondrial disease
with
Dr. Bruce Cohen, from the Cleveland Clinic
Listen to the recording of this meeting here
Join us with Dr. Bruce Cohen from the Cleveland Clinic in Ohio, US to discuss his perspective on the use of hyperbaric oxygen therapy, also known as HBOT, for people with mitochondrial disease.
Hyperbaric oxygen therapy is the use of 100% oxygen at a level higher than the atmosphere. HBOT is controversial, and has long been used to treat some conditions, such as carbon monoxide poisoning, burn inuries, and decompression sickness. However, some studies propose that HBOT may play a positive role with other conditions, such as autism, cerebral palsy, brain injury, multiple sclerosis and others.
Some patients and parents ask, "Is hyperbaric oxygen therapy safe for a person with the diagnosis of mitochondrial disease?"
Join us to learn more. All are welcome!
Dr. Cohen would like listeners to refer to the following links during the call:
Dr. Bruce Cohen, from the Cleveland Clinic in Ohio, is well known in the mitochondrial disease community. In addition to his background in mitochondrial medicine, Dr. Cohen has an extensive background in conducting clinical trials for cancer treatment.
Basic Physiology of Mitochondria Please refer to the PowerPoint slides which accompany this presentation.
The first slide demonstrates the energy flow through the electron transport chain from complex I to complex V. Protons derived from the breakdown of food particles are pumped into the intermembrane space of the mitochondria to create a positive charge in this area. NADH is the high-energy compound that drives these pumps. At complex IV you can see a reaction where the oxygen is combined with hydrogen to form water and with electron transport, ATP now becomes a "charged battery" in the mitochondria (ie, it is full of energy).
Slide 2 is another depiction of the electron transport chain. O2 (oxygen) is turned into water at complex IV. When a muscle biopsy is conducted in the lab in order to diagnosis mitochondrial disease, the mitochondria are observed as they are fed molecules such as NADH, and the speed of the electron transport chain is measured. Like a car engine, the mitochondria can only burn fuel at a certain rate; it cannot go any faster once it reaches a certain point. It has been discovered that no matter how much oxygen is provided for the mitochondria, the electron transport chain has a maximum speed at which point it can run no faster. Increasing the amount of oxygen above that which is in the atmosphere does not speed up the reaction.
Slide 3 reiterates how oxygen in the mitochondria is combined with hydrogen at complex IV to produce water.
Slide 4 (not shown) introduces the concept of free radicals. Free radical oxygen molecules (called superoxide free radicals) are mainly produced after complex I when electrons attach themselves to an oxygen molecule. Free radicals can appear in other places along the electron transport chain as well, and the body has some mechanisms to get rid of these free radicals (enzymes that convert them back into oxygen and water).
Slide 5 shows where free radicals are produced in the mitochondria. This occurs in healthy people - we need some free radicals, and they are produced in the natural aging process.
Slide 6 shows how free radicals can, however, damage the body. These "extra" electrons on the O2 can damage nuclear DNA, mitochondrial DNA, and can rip apart other molecules and create a whole list of problems for the human body.
As demonstrated on Slide 7, external toxins can produce free radicals that assault our bodies: ultraviolet light, radiation (used to kill cancer cells to die but can damage healthy cells as well), smoking, air pollution, and inflammation (from a viral infection, for example).
Slides 8 & 9 humorously demonstrate the importance of eating fruits and vegetables to help eliminate free radicals; some say blueberries are the best free radical fighter of all.
Hyperbaric Oxygen Therapy (HBOT) Hyperbaric Oxygen Therapy is a method of delivering more oxygen to the body than is available in the atmosphere. The percent of oxygen in the atmosphere is normally about 20%. Patients with cardiac or pulmonary disease sometimes receive 100% O2 through a face mask or nasal tube as a treatment because their organs (heart and lungs) are not functioning properly. HBOT is used in people who have suffered diving injuries and also for those with gangrene because it provides more oxygen for the tissues. In some patients who develop radiation necrosis years after radiation treatment for cancer, HBOT can be used to slow down or reverse this necrotic process. These uses of HBOT have all been proven useful through rigorous controlled research studies.
Scientific Method The last two Wikipedia references are articles about scientific research and clinical trials. The first article discusses the scientific method; that is, the objective of scientific research is to prove something using a rigorous controlled trial. The objective of using the scientific process is for a scientist to prove that something works, not to prove it doesn’t work. For example, it is the obligation of the person who says that HBOT works as a treatment to prove that it works using thorough scientific methods.
Clinical Trials In medicine, clinical trials have several phases and are designed to establish efficacy (ie, does the treatment/drug/procedure work). In Phase 1 trials, the maximum tolerated dose is established. These trials begin by using the smallest possible dose and then increasing it in small increments to see at which point harmful side effects begin to appear. The trial is stopped and the maximum tolerated dose is established. Once the safety factor is established through Phase 1 trials, Phase 2 trials establish effectiveness - does the treatment work? Finally, Phase 3 trials set about establishing whether this new treatment is in fact better than any other treatment. This phase can be difficult to complete because we don't want to deny anyone a known treatment in favor of a new unproven one. This is why sometimes clinical trials cannot always be undertaken safely. If the "new" treatment is NOT toxic and fairly inexpensive, then it may be worth trying. About 20 - 30 years ago Aspirin was given to women with the idea that it would decrease heart attacks. The scientific results were not that it decreased incidence of heart attacks, but that it did decrease the incidence of strokes. Also, some patients show that taking CoQ10 supplements can be of great help. However for other patients, there is no change in their condition. Since CoQ10 has few if any side effects and is fairly inexpensive, it is often recommend to patients even though its use has not been subjected to rigorous scientific research.
Scientific research has shown that HBOT cannot speed up electron transport. It is also known that adding oxygen to systems that do not need it can result in an increase in free radicals which can damage the body. For example, newborns in the 1950’s who were placed in high oxygen environments became blind because of free radical damage to their retinas. In patients with mitochondrial disease, there appears to be a risk associated with the use of HBOT due to the risk of free radical damage, and Dr. Cohen cannot support its use. "I am not enthusiastic about it [Hyperbaric Oxygen Therapy] as a treatment for mitochondrial disease." Dr. Cohen would be interested in clinical trials that could prove that HBOT was an effective treatment for Mito: there are none to date.
Summary Though there is personal testimony that HBOT has worked for some patients with certain Mito conditions, there is no scientific evidence to date that would positively indicate the use of HBOT as a treatment for mitochondrial disease. Dr. Cohen recommends further study in this area. Sometimes there are treatments that work for certain patients that are at the time unexplainable. Until these can be explained by science, however, he cannot recommend them as treatments.
QUESTIONS
Several people called to say that they (or family members) had been treated with HBOT and had great relief from Mito symptoms. Dr. Cohen felt that these phenomenon were still unexplainable and encouraged the callers to seek sources who might study these phenomenon in a rigorous scientific manner.
Why does regular O2 treatment work? Patients with cardiac disease or lung disease can be aided by O2 administration because these organs need O2 to function and if diseased, more O2 can ease their workload. An example for Mito patients might be someone with low O2 saturation levels who develops sleep apnea. Instead of a normal O2 level of 96-99%, it drops to 85% or lower during sleep which is not good. Having extra oxygen supplied at night can keep their O2 saturation level near normal during these apneac spells. This oxygen is not treating or helping the mitochondrial disease per se, but rather other body organs that may be compromised due to mitochondrial disease.
Summary compiled by Joanne M. Turco, RN, MS, Danielle D’Ambrada, and Cristy Balcells RN MSN
Please join us!
MitoAction meeting details
Friday August 6th, 2010
Noon eastern US time (find your time zone)
by toll-free teleconference
1-866-414-2828, participant code 017921# All are welcome!
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This meeting will be recorded and posted here along with a summary following the meeting. To find summaries from other presentations, go to the blog page
I'm looking forward to the
Submitted by mryanone on Tue, 08/03/2010 - 12:36pm.
I'm looking forward to the discussion on Friday, Aug 6th. I am a hyperbaric oxygen technologist just outside of Boston in North Reading. I can answer any questions (or help you find answers to some questions), if you want to call or email me. My contact info is mryanone@gmail.com or call (978) 290-3472 cell. Where I work is http://www.HOPE-Connection.com, in North Reading, MA (but we may have new sites this fall in NH and southern MA). There is a good amount of information supporting a decision to incorporate HBOT (hyperbaric oxygen therapy) into a program of care for Mitochondrial conditions. It's proven effective but is relatively unknown for many reasons. Send an email to info@hope-connection.com to receive an automated response with some information on our company.
- Mike
I too am looking forward to
Submitted by Gerri on Tue, 08/03/2010 - 10:38pm.
I too am looking forward to the hyperbarics and mito discussion. I have two children with mito that have benefited tremendously from hyperbaric oxygen. I started hyperbarics last year and since my kids have lost many medical diagnosis (severe asthma/allergies, gastroporesis, vomiting, alopecia, immunodefeciency, seizures, failure-to-thrive, pyloroplasty w/ tube feeding, etc). My son's eosiniphilic esophagitis has been in remission since treatment and he continues to thrive without needing a tube feeding. I realize there is a risk for oxidative stress, so I made sure my children were observed under a physicians care during hyperbaric treatment. I educated myself as well. I just know from my own personal experiences that hyperbaric oxygen has breathed new life into my mito kids.
Gerri, RN and mom to 2 much healthier kids
I too am looking forward to
Submitted by Gerri on Tue, 08/03/2010 - 10:38pm.
I too am looking forward to the hyperbarics and mito discussion. I have two children with mito that have benefited tremendously from hyperbaric oxygen. I started hyperbarics last year and since my kids have lost many medical diagnosis (severe asthma/allergies, gastroporesis, vomiting, alopecia, immunodefeciency, seizures, failure-to-thrive, pyloroplasty w/ tube feeding, etc). My son's eosiniphilic esophagitis has been in remission since treatment and he continues to thrive without needing a tube feeding. I realize there is a risk for oxidative stress, so I made sure my children were observed under a physicians care during hyperbaric treatment. I educated myself as well. I just know from my own personal experiences that hyperbaric oxygen has breathed new life into my mito kids.
Gerri, RN and mom to 2 much healthier kids
Hello,I want to thank Dr.
Submitted by mryanone on Fri, 08/06/2010 - 3:17pm.
Hello,
I want to thank Dr. Cohen for his time and presentation. After the call, it was evident that the presentation was well-received and very, very useful to everyone attending.
In terms of the cost of HBOT, sometimes there is no cost to the patient. Prices range from $40/hour to $150/hour [Note: I've even seen $275 an hour at an independent HBOT center, which is ridiculous, and I've also seen $4,300/hour at a hospital, which is criminal but normal for hospitals], but these costs are based on oxygen being used (or delivered to patient).
If mHBOT (mild hyperbaric oxygen therapy) is the protocol, this implies that NO oxygen is being used and that the pressure is the only thing being used. When oxygen is taken out of the equation, the cost is less. Of course, parents and caregivers need to help with levelling the playing field, so that doctors and others looking in understand exactly why some people have successful results and some do not. (Other factors to document when explaining a patient's experience with HBOT are: the altitude (to sea water) where the chamber is located, minutes per session on oxygen, number of those sessions, oxygen delivery flow rate, and percent of oxygen.)
At our facility in MA, HOPE-Connection.com, we consistently raise money for those that cannot afford sessions (we have a 'sponsorship' program where donations from one or several donors are applied to the patient's costs of treatment, which means certain cases - depending on need - are cost-free). Our faciliy is family-owned, the reason being the family has children who use HBOT and they believ enough in it to have purchased 2 steel chambers 7 years ago.
Hyperbaric oxygen means 2 things - hyperbaric and oxygen. Hyperbaric refers to the pressure (high pressure). Oxygen refers to the breathing of pure, 100% oxygen (as opposed to 21%).
Concerning clinical trials, the HBOT medical industry should be tasked with providing scientifically-based studies. One reason often cited as a reason that HBOT does not have these trials (double-blind) is that it is impossible to 'pretend' that you, as a subject, are NOT being put under pressure, when you are (your ears tell you you are being put under pressure, and therein lies one of the issues preventing these studies - how do you you pretend you are not under pressure when you are?) Another reason HBOT studies are so difficult is that pressure, just by itself - with no oxygen at all - is an intervention. If you go into a chamber and sit there for an hour and breathe the air in that chamber, you are receiving an increase in partial pressure oxygen. This means that even if a study is structured to test HBOT, that study needs to take into consideration the fact that any pressure changes will taint the study; in other words, if you put someone in a chamber and put them under pressure, that person is now being given an intervention, called pressure (and that intervention should be kept separate from another intervention, "pressure + oxygen" (which is commonly referred to as HBOT).
Our facility will gladly participate in scientifically-based clinical trials (and contribute to such), if the rules of engagement and study can be clearly scoped out by a 3rd-party, like Dr. Cohen. I, personally, could also engage other HBOT centers to participate. Another reason HBOT is often cited by medical professionals as not having the documented trials is due to the cost of such trials; I always say that if HBOT were a drug, it would be known by every first-year medical student, but oxygen is not patentable, like a drug. So, its simplicity (like exercise) prevents it from being taken seriously or worthy of the research of doctors who would rather prescribe medicine. But, the same thing can be said of hip replacement - is there a clinical trial for hip placement? No.
Does HBOT work for some people? Yes. Some individuals are responsive, much like with autism. Why are some individuals responsive and others not. That is a question a doctor who specializes in Mitochondrial conditions and autism should be on the hook to answer. If they cannot explain that, then they do not fully understand autism, as many doctors treating autism will tell you. The problem is that doctors do not put enough energy into exploring the gap between why an intervention like HBOT works in Mito and autism cases. Dr. Cohen is clearly a hard-working and caring individual, but to get answers to this question, there needs to be more involvement of doctors and HBOT centers (akin to the amount of effort that Dr. Harch at HBOT.com expends). HBOT has proven itself worthy of doctors' attention, so, hopefully, there will be more Dr. Cohens out there, even if they do not condone the use of HBOT. Testimonials cannot be ignored.
Autism is clearly treatable (visit autism.com, and attend next week's mitoaction call) and HBOT works to treat it, but people are different and have different responses. HBOT is not for all people, to be sure, but the patients using HBOT all need to be using the same protocol and go through the same number of sessions/hours, or else we're comparing apples and oranges. Even in the autism community, parents and caregivers compare apples and oranges: some have good responses to HBOT and some do not, but the number of sessions/hours of treatment is rarely the same (some parents quit after 40 sessions and some continue on to do 120 hours, etc.) This is why the HBOT community is hoping that more doctors like Dr. Cohen get involved with the efforts of HBOT and more people look into HBOT.
All that anyone in the HBOT world can hope for is that medical professionals give HBOT more attention than it is getting, because there is a real reason that HBOT works for some mitochondrial and autism patients and not all people. I hope that Dr. Cohen does not turn the page on HBOT but asks himself why HBOT is effective in some cases.
To hear a doctor to say that he is against HBOT due to a child's death (caused or not caused) by HBOT without any supporting facts is enough reason for me to ignore the doctor's assertion that HBOT is not effective or even dangerous for mitochondrial disease patients. I would treat that statement like any other testimonial, good or bad.
Sincerely, thank you for the talk, and your time and effort, Dr. Cohen, and thanks for taking the steps you have in explaining what you know about the link between HBOT and mitochondrial disease.
Count me in to contribute to the forming of a task force to explore the possibility of scientifically-based studies proving the benefits of HBOT for mitochondrial disease patients. If we want the HBOT community to get involved in this, we can start here.
Disclosure: I am a business owner in HOPE-Connection. I am also an EMT, an EMT and have over 14 years experience working as a one-on-one aide to a TBI survivor and others with Parkinson's and other neurodegenerative diseases.
I too want to thank Dr.
Submitted by Gerri on Sat, 08/07/2010 - 1:44pm.
I too want to thank Dr. Cohen for his time and effort in explaining HBOT and mitochondrial disease. He is truly a very caring physican and individual. He is not only knowlegeable in his field, but he has a great bed side manner as well. During the tele conference, it was nice to hear him say he believed all of us w/ mito when we said we had success w/ HBOT. He also mentioned it did not make since why HBOT worked. He explained that giving the cells more O2 does not make the electron chain work any faster. In fact, it may cause more free radicals/oxidative stress.
This is why my children's HBOT doc started the kids out slowly. HBOT treatment should be taken slowly and cautiously under supervision of a trained physican/tech. My children both started out w/ 1.3 atm at room air. Then, gradually as tolerated the pressure was increased to 1.5 atm at room air, Then, intermittent O2 at 1.5 atm as tolerated. Finally, ending up w/ 1.5 atm at 100% O2. This was over a series of 40 HBOT treatments. These pressures are mild. And, if the Dr. would have noticed any symtoms of oxidative stress, he would have decreased the O2 and or pressure. My children only showed positive results.
When Dr. Cohen mentioned a child dying from HBOT. I reserve my opinion due to the unknown facts of this particular case. Oxygen therapy is very safe if monitored closely and could improve the lives of many w/ mito. My children are living proof of that. For example:
My son, regressed in development around a year. Over a 3 year period, he was diagnosed w/ Autism, failure-to-thrive, many food/environmental allergens, seizures, multiple upper respiratory infections, fecal impaction/constipation, tremors, global body weakness, eosiniphilic esophagitis, and mito.
My daughter, regressed in development and health around preschool age. Prior to preschool, she had some food allergens, asthma, and some mild delays. However, she was catching up in development w/ early intervention and her allergies were getting better. In fact, she graduated out of all services in early intervention, except speech and that was significantly decreased.
Within the first year of preschool and the beginning of kindergarten, her health and development declined significantly. She was diagnosed w/ ADD, immunodefeciency disorder, multiple pneumonias requiring hospitalizations ICU, GERD, delayed gastric emptying, alopecia, vomiting, insomnia due to abdominal pain, overall weekness w/ unstable gait, and mito. By the time she reached first grade, she had lost most of her hair and lost a lot of weight. She needed a pyloroplasty w/ tube feeding.
I was fortunate enough to have a mom (Kristi Hogg) contact me on a mito digest blog when I had questions about HBOT. She quickly told me all about her daughter. Then, she put me in touch w/ Shannon at the Wisconsin Integrative Hyperbaric Center.
My kids started HBOT treatment under the care of Dr. Kyle Van Dyke in the spring of 2009. By the fall of 2009, my kids had improved tremendously in health and development.
My son: Seizure free, gained weight, eosiniphilic esophagitis in remission, increase language/eye contact, increased energy in activities, allergen testing normal, increased muscle coordination/strength, increased tone. He started trying new things in all areas of development. He started making progress in school.
My daughter: Lost GERD and gastroporesis diagnosis, VOMITING EPISODES STOPPED COMPLETELY BY 3RD TREATMENT OF HBOT, began gaining weight and not requiring a tube feeding, sleeping all night, all GI meds were discontinued, episodes of pneumonia gone, upper respiratory infections gone, asthma meds were decrease 100%, increase in cognition, tone, and energy, gait improved, no more tripping eisodes. She had O.T. services discontinued outside of school. All other school therapies have been drastically decreased. She is in a less structured classroom.
Hyperbaric oxygen has breathed new life into my children. Currently, both children continue to make gains in all areas of development. They are also both healthier than ever before. They get typical illnesses that do not require hospitalizations. As long as I continue to see improvements in the children, I will continue hyperbaric oxygen.
My hope is that one day very soon a 3rd party researcher will perform a clinical trial of HBOT and mito, so more individuals w/ mito get access to this treatment with insurance coverage.
Lastly, thank you again Dr. Cohen (Dr. Marvin Natowicz) for diagnosing my children. The diagnosis of mito for my children has given me knowledge of what disease I am up against. Knowing that they both have mito caused me to broaden my knowledge in the mainstream medicine and biomedical medicine (HBOT). As a result, my children are no longer losing their battle with mito. Their quality of life has greatly improved since treating with hyperbaric oxygen.
Thanks again,
Gerri, RN and mommy to 2 much healthier children w/ mito
Thank you all for posting
Submitted by gordanax1 on Wed, 08/11/2010 - 12:39am.
Thank you all for posting this presentation. I also started today with my sons first session of mHB chanber treatment. but I am baffled with the difference (if any?) with the pure o2 concept and the one without (with only room air but with the pressure at 1,3 ATA (4 Psi). Can somebody knowledgeable explain? I too noticed that part (around the 6 minute into the presentation) tat, basically, the cell can take only so much O2, and that even at room air, provided it is compressed, has some good results...? Can ANYBODy confirm this to me. I can barelly scrape for soft chamber treatments ($75/ session) and I am not sure what benefits , if any, would the pure O2 treatment yield.
Thank you for your time answering this.
Thank you kindly, Mito
Submitted by ronmills on Thu, 08/19/2010 - 10:56am.
Thank you kindly, Mito Action and Dr Cohen, for this informative presentation. Yesterday (Wed 18 Aug) we posted a review for HyperbaricLink visitors on our newsblog: http://bit.ly/bU6I3p.