Some of you knew what mitochondria were before floxing, and some of you didn’t. Maybe you remember the name from a past science class, but the word mitochondria is not exactly a household word that you banter about in day to day living.
Obviously if you are reading this, you are in some way associated with the Fluoroquinolone (FQ) community and, being involved in the FQ community, have probably heard a lot about mitochondria.
I received a crash course in mitochondria shortly after becoming floxed and have been learning ever since. Having been tracking chronically floxed individuals for several years now I am 99.9% convinced that our beloved mitochondria are at the heart of chronic floxing.
Chronic floxing is very complex and when it comes to understanding complex chronic disease we need to look at the mitochondria because they are the hub of the wheel of your body’s metabolism.
Did you know that more than 90% of the pathways that break down food into building blocks pass, in-part, through the mitochondria? Did you also know that 70% of the pathways that make new building blocks also pass, in-part, through mitochondria? The mitochondria perform over 500 chemical reactions within the cell, they turn food and drink into energy, and they use the oxygen we breathe for fuel.
Watchdogs
Something fascinating that I just recently found out about mitochondria is that they stand guard over the cell they inhabit. Always on guard, they spring into action when a virus attacks, a toxin is detected, or some insult take place that threatens cellular stability. When they sound the alarm, the mitochondria stop what they were doing and take up arms to help defend the cell. In addition, they can change their shape and locations within the cell to help defend it.
Part of this defense mechanism requires them to send messages in the form of metabolites to the nucleus of the cell and to neighboring cells to signal danger. This is called the ‘cell danger response’ or CDR. When this happens, gene expression is changed and neighboring cells can prepare for battle. After the danger is over the mitochondria send signals to heal the damage.
Could The Root of Chronic Floxing Be The Cell Danger Response?
Dr. Robert Naviaux, Professor of Genetics in the Departments of Medicine, Pediatrics, and Pathology at the University of California, San Diego (UCSD) School of Medicine, recently made some breakthrough discoveries that I believe are going to impact the future of chronic floxing. In his lab at UCSD they have discovered that in chronic complex disease processes the mitochondria’s CDR can get stuck in the ‘on’ position for too long. When this happens, normal healing cannot proceed.
Dr. Naviaux discovered that when the CDR stays on too long chronic conditions ensue such as chronic fatigue syndrome. Many, many chronic floxies exhibit fatigue as a major symptom and many meet the qualifications or criteria to be diagnosed with Chronic fatigue. Although problems with the mitochondria can run the gamut, fatigue is a major component in mitochondrial dysfunction or disease.
Living In the Twilight
I know a lot of floxies who are functionally disabled yet appear normal on most medical tests. This conundrum is quite common, and also common in other disease processes such as chronic fatigue. This ‘normalcy’ is quite frustrating. Most physicians cannot or will not treat for something that they cannot quantify through testing and yet most floxies feel as if they are at death’s door.
Short of having a tendon snap or an aortic aneurism or some other traumatic health event, many floxies hover in the twilight world of limited functioning. They often are so tired that walking or using their arms are quite a chore. Couple this with severe brain fog, muscle aches and pains, various forms of neural dysfunction, digestive issues, and so on, life becomes quite difficult.
Occasionally something may show up on vitals, such as slow pulse or depressed respiration. Or the occasional transient spike on a blood test marker. But for the most part, many floxies remain frustratingly normal, on paper.
Despite what you have been told, you and I both know, it is not in your head, far from it.
Again, this conundrum is not exclusive to the floxing world. In the chronic fatigue community many of those with CFS suffer from the same paradox. On a side note, my own personal research has shown me that a shocking number of those with chronic fatigue are actually floxies, many of whom have not connected their illness to FQ’s or many who will not believe that FQ’s were the trigger for their illness, but I digress. Many CFS suffers are bedbound, or have severely limited functionality, and remain frustratingly normal on most medical tests.
But that is changing…
Enter Metabolomics
If you haven’t heard about Metabolomics you soon will. Metabolomics is one, if not the, newest rising star in the high-tech race to gain a molecular understanding of health and disease. Metabolomics uses a machine called a “mass spectrometer” to measure hundreds of chemicals in our blood.
Dr. Naviaux is a pioneer in the metabolomics field. In his lab, at the University of California San Diego, with a single blood specimen, he can measure over 500 of these chemicals from over 60 different biochemical pathways.
Dr. Naviaux says that “These chemicals are the building blocks that cells use to grow and function, to fight and to heal. Like a Hubble telescope for medicine, metabolomics is allowing us to see deeper and with greater clarity into the universe of the cell than has ever been possible before. In a drop of blood, we can “eavesdrop” on the collective conversations of all the cells in the body.”
When Dr. Naviaux turned his metabolomics analysis on chronic fatigue the results were astonishing. In this study Naviaux, Eric Gordon, Neil Nathan and others examined 612 metabolites from 63 biochemical pathways in the serum of 45 ME/CFS patients (Fukuda / CCC criteria) and 37 age and sex-matched controls.
Twenty of the 63 biochemical pathways were highlighted in ME/CFS. Eighty percent of the metabolites that were abnormal were down-regulated (1).
Metabolomics has given hope to the Dafeo family. Their son Whitney, suffering from severe chronic fatigue, has been tested every which way and some minor problems had been found but nothing that had reflected how ill he was – until now. His metabolomics results revealed row after row of abnormalities – some of which were levels of magnitudes off the charts. Instantly a new world opened up for them.
Metabolomics: Hope For the Chronically Floxed
If you are chronically floxed, metabolomics is a new hope appearing on the horizon. A horizon that is not far off.
Dr. Naviux says that “Metabolomics reveals a new window into the underlying biology of CFS that makes us very hopeful that effective treatments will be developed soon and tested in well-controlled clinical trials.”
I agree with Dr. Naviaux who believes that the answers for many chronic diseases are not going to come from the usual treatments.
I believe that metabolomics is going to open a door for giving us insight into chronic floxing and treatment options for chronic floxing. Metabolomics could be the tool that identifies the abnormalities that are present in those who are chronically floxed. Once those individual abnormalities are identified the possibility exists for individually tailored treatments.
What we need now is actual research into chronic floxing using metabolomics, because I believe metabolomics provides the best hope for individually tailored treatments. I for one, am going to be working as best I can, on putting together the opportunities for this to happen. It is about time something concrete is done in the way of seeking treatments.
Please stay tuned to MyQuinStory as I will post more on this exciting subject as soon as I have more details available. If you would like to donate to metabolomic research, click the donate button. Thank you.
Sources:
http://www.openmedicinefoundation.org/expanded-mecfs-metabolomics-study/
http://www.healthrising.org/blog/2016/09/01/metabolomics-naviaux-chronic-fatigue-syndrome-core-problem/
Can’t come soon enough!
Couldn’t agree more!
i’m so excited that a cure is finally being worked on .. THANK YOU!!!! We really need this.. I am so curious ! Please keep us updated . I’ve tried everything and nothing works.. Been floxed now since 2007! . so 9 years living with is is long enough….
Where do I mail my blood?
What would be an example of a possible treatment using metabolites? Would it be injecting normal metabolites into the blood stream to replace those that are abnormal to help “reset” the mitochondria?
Praying it will be in my lifetime.
Best and most hopeful post I have seen.
Great article but we’ll likely all be dead before any treatement would be researched and approved.
Hoping this is soon . . . very, very soon. I really want to either find wellness or just give up. The pain is physically deafening.
I’m praying for this! I feel this disease caused by Cipro is going to take my life!!!!! Please help us!! Thank you! Amen
I will probably die until this starts to be done in Turkey 🙁 fq poisoning is not even recognized in here, no different than telling your story to the walls 🙁 its been 9 years since ive been ill and whats worse is im also poisoned from overdosed tetanus&diphteria vaccines (god damn nurse and doctor!) at the same time 🙁 its even a miracle that im still alive!