Monday, November 14, 2011

The Mighty Mito (Part 1)

I have been away from my blog for quite a while, and I have had several emails requesting an update with how I am doing. (see my symptoms list for an update).  This blog post focuses on my next steps in my journey to hopefully more healing, the investigation of the mitochondria.

Mitochondrial dysfunction has been resurfacing time and time again among the online groups and discussions with my doctors. What is mitochondria?  The mighty mitochondria is the “power house” for our cells, without them our bodies cannot function at its optimum.  Mitochondria are organelles in our cells that convert nutrients into energy for our bodies and are responsible for 90% of cellular energy.  When they are malfunctioning, they can cause a “brown out” of any or several body systems. 

 I have avoided being tested for mito dysfunction, because of the dreaded muscle biopsy.   However, I have continued to research this theory, and several discoveries have made me finally pursue this possibility:
 

First, I have had 3 doctors mention mitochondrial dysfunction to me, and each independently recommended a muscle biopsy.  I certainly have not wanted to undergo something so invasive.  So, until now, I have put this request to be tested on the back burner.  It has now been almost 1 ½ years since my last reaction to Levaquin.  My pain has greatly reduced, and I no longer require anything for pain.  It still resurfaces occasionally, but the pain is bearable without the use of medication.  However, the muscle fatigue, digestive problems, exercise intolerance, autonomic dysfunction and fasciculations have started to increase again.  These all still interfere considerably with my quality of life.  Multi-system problems, muscle fatigue and exercise intolerance are the hallmark symptoms for mitochondrial dysfunction.


Second, my family history also has me wanting to research this further.  Disorders that run in my family (Parkinson’s, epilepsy) have been linked to mitochondrial disorders.  I think it is possible for me, that I had mitochondria that perhaps where not functioning at their optimum, and Levaquin “did them in”, so to speak.


Third, MitoAction.org has several interesting podcasts that possibly support this hypothesis.   One titled “Drug Toxicity and Mitochondria” actually discusses Fluoroquinolones that have been found to cause mito dysfunction.  (Minute mark 52)  Trovafloxacin, a fluoroquinolone antibiotic, was found to cause mitochondrial damage and was withdrawn from the market.  The speaker then proceeds to say, that once one medication in a drug class has been found to cause mito dysfunction, it is safe to assume others in the same class will do the same.  That is enough for me.  


Fourth, I have found that one of the top docs for mitochondrial dysfunction is very close by; I could not pass this opportunity up.   Dr. Fran Kendall is the medical adviser for MitoAction.org.  She is on the cutting edge of research and does much of her testing through buccal swabs and blood tests first.  She has found that muscle biopsies are less than 30% accurate in diagnosing mitochondrial dysfunction; therefore, muscle biopsies are the last resort for her practice. 
   

Dr. Kendall sent me a packet to complete that wanted everything, including the kitchen sink.  She wanted a detailed description of family medical history going all the way back to my grandparents and their siblings, medical records and of course my own history.  I sent the 80-page packet of information to her, which she will review before seeing me.  Despite having an appointment with her, I am still not certain that I will actually be tested for mitochondrial disease.  It depends on a lot of factors: what Dr. Kendall thinks, how I feel about her after our first meeting, and testing involved.  I do feel it is at least worth this first step in the investigation.


What happens if I do get a diagnosis for mitochondrial disease?  Mito-toxicity from medications is thought to more than likely improve.  I guess the big question would be, “Do I have both genetic and toxic mitochondrial disease?”   There is no cure for genetic mitochondrial dysfunction; however there is treatment to allow your body to function at its optimum.  These include diet, exercise and a “mito cocktail” of supplements.  I know this is what many are doing now in the FQ toxicity world, but for me, I am tired of haphazardly taking supplements without knowing what will or will not truly help me.  Guidance in this area would be greatly appreciated.  


Perhaps, this is the reason some seem to improve after their adverse reaction.  Suppose the theory that FQs damage mitochondria is true.  Could it be that those with a "pure" toxin induced disorder are the ones that improve?   Could it also be that those of us that don’t heal, had an unknown subtle dysfunction before, and this has made it worse?  I wonder if that is the difference between those who get better, and those who don't.  Bear in mind this is MY theory, and none of it is based on fact.  I am curious to hear Dr. Kendall’s views on Fluoroquinolone antibiotics and the mighty mitochondria. 

Thanks for reading!


Coming December….The Mighty Mito (Part 2)