The Mighty Mito ~ Part 3

The day finally came; I had my appointment to review my results with Dr. K.  I wasn’t expecting much, because I had received copies of my reports prior to meeting with her.  I had seen for myself, nothing seemed to be jumping out as real problems.   The only thing that appeared odd was that I was low in 18 of my amino acids in the urine test. I was hoping this would be important in some way.  However, I was told that this was not of significance and can vary throughout the day.  That was frustrating to hear to say the least.  My buccal swab test was normal for Complex IV and for the Complex I, it was .1 below the normal range.  Again, this is not significant.  The buccal swab test is only 82% accurate.   I knew this when entering into this way of testing, but I wanted to try the least invasive way.  Buccal swabs cannot test for Complex II and III of the mitochondrial chain.  It is only a screening test. Non-invasive evaluation of buccal respiratory chain

 Dr. K basically said the next step is a muscle biopsy, but I refuse to do it.  The reliability rate for that is also low.   She stated that she knew people who have had 3-4 biopsies, all of which have come back with different results.  I feel for me, there is not enough true benefit to do it.  Yes, it MAY perhaps give me a “name” of what has happened, but she would not treat me any differently. The risks however, far outweigh the benefit in my personal opinion.  I feel my body would not handle an invasive procedure like that very well, and it is still a high possibility the test would tell me nothing.  She still believes that Levaquin was "toxic" to me, and that it probably did damage my mitochondria, just no proof of it.   She wants to retest me in November, a year after my first tests, to compare the results.   Perhaps later down the road, I will still choose to do the biopsy, but for now- NO.

So, to put it briefly, this is what my current doctors “think”:  Dr. K- mito toxicity from the Levaquin, but can’t be proven; My neurologist, peripheral neuropathy (small and large fiber) confirmed by testing and a possible myasthenic disorder, which has yet to be proven; Rheumatologist, not a rheumatological problem, he believes it is all neurologically related.  All 3 have mentioned mito as the underlying cause.  All 3 agree Levaquin caused my current problems.

“I can't go back to yesterday because I was a different person then.”
― Lewis Carroll, Alice in Wonderland

I have decided that Levaquin is the perfect perpetrator of a crime.   It leaves no evidence behind, just the damaged body.  What makes it more frustrating is that it can be totally invisible.  To others, I look “normal” even healthy to some.  I have had comments even within the fluoroquinolone community, that I look “healed”.  I would think, they of all people would know how you look on the outside, can be deceiving of how you feel on the inside.  Very few see me on days where I cannot get dressed because of fatigue and pain.  When people see me, it is because I am having a better day, and I still want to look my best.  Just because I put on make-up, wash my hair, does not mean I am healed.  It is the double edged sword of an invisible illness. 

Fatigue is still one of my most limiting factors. I have two types:  Central fatigue, meaning my overall energy level is decreased to the point it can be debilitating. The second is muscle fatigue, where my muscles cannot maintain performance in an activity, especially repetitive ones. They become sore, weak, and shaky causing me to stop what I am doing.  Driving, unloading dishwasher, folding clothes, washing hair, stairs, even stirring a pot of food are just a few examples of what can be a problem.  You can imagine this makes it difficult for me to feel I have much of a productive day. Some disorders cause both, some disorders may only cause one of these types of fatigue. It wasn't until I read this article did I realize how complex the problem of fatigue can be to medically solve.  Fatigue in neurological disorders 

I have been taking my "mito cocktail" of supplements now for 3 months and it has helped my central fatigue significantly.   I now feel like I can get up and do something.  However, nothing seems to help the muscle fatigue, so that continues to be a limiting factor .  I introduced each supplement slowly, so to be aware of any problems each may cause.  The supplements that were suggested to me by Dr. K include: 

            L-Carnitine 330 mg , 3 times a day (this is prescription strength)
            Alpha Lipoic Acid 300 mg twice a day
            Coenzyme Q10 600 mg a day
            B2 (Riboflavin) 100 mg a day
            Creatine 5 grams a day

So far, so good, the only supplement that she suggested that I have not begun is creatin.  

I have had many emails, some asking if I believe I will be healed.  The answer to that question is a difficult one, nor do I think  it can be answered with certainty.   I will admit, since my 2 year mark is fast approaching, I am becoming less hopeful.  However, I am so much better than I was those first 6 months, and for that I am very thankful.  I am learning to adapt my life, to accommodate for the symptoms I have been left with.  I drive with hand controls; I take frequent rest breaks; I leave the heavy household duties for others in my family; I don’t over plan my day; and if I am feeling wiped out, I make sure I rest. 

"Would you tell me, please, which way I ought to go from here?"
"That depends a good deal on where you want to get to," said the Cat.
"I don’t much care where--" said Alice.
"Then it doesn’t matter which way you go," said the Cat.
"--so long as I get SOMEWHERE," Alice added as an explanation.
"Oh, you’re sure to do that," said the Cat, "if you only walk long enough."
(Alice's Adventures in Wonderland, Chapter 6)

When I started this blog, I thought it would only be for a year.  I would document my journey, what I did to get better, and then wrap it up with success.  That has not happened yet.  My voyage has taken me down paths I did not intend.  I have become an advocate in the fluoroquinolone community, a co-moderator for one of the largest online support groups, began volunteering for www.saferpills.org, and work daily to help others who are just now starting their own journey through an adverse reaction.  Is this the life I had planned?  Certainly not, but who does have that kind of life which they planned, with absolutely no bumps or detours along the way.  The best I can do, is make the most of what I have now.  So, for now, I will continue with my daily “cocktail”, keep advocating, and take one day at a time.  For you never know what healing a day can bring.  

Thanks for reading!