As promised, I have an update from my visit with Dr. Kendall, a mitochondrial specialist. In my last post, my husband accused me of writing for Wikipedia, saying it was pretty boring. Well, it is sort of hard to make Mitochondrial Disease sexy and exciting, but I will see what I can do.
I really like Dr. Kendall and I definitely feel I have come to the right
place for answers. She strongly believes
I have Mitochondrial Disease based on my own medical history and that of close family
members. She said I have too many “red
markers” for Mito to ignore it. We are going forward with the extensive
testing, which includes a buccal swab test for mtDNA and blood/urine
tests. We have opted not to do the
muscle biopsy (a common diagnosing tool) at this time. We both would rather avoid something so
invasive, since my body has had slow healing time after other minor
injuries. There are currently 1500 genes
involved in the mitochondrial process, and with current technology, only 40%
can be studied. She stated that no
matter what the test may or may not show, she has no doubt I have Mito, and the problems could very well lie in the 60% of the genes they can not yet study. I could possibly have both forms of it,
genetic (based on family history) and toxic (caused by the Levaquin). The combination of the two may explain why I am no longer making
improvements. During her exam, she also reconfirmed dysautonomia and
gastroparesis. I am to have a gastric
emptying study to learn more about the gastroparesis.
In our further discussions, she asked me a little about the FQ
support groups in which I am involved. I
gave her an overall synopsis of the symptoms people seem to suffer after an
adverse reaction to a Fluoroquinolone Antibiotic. She has seen others affected by Levaquin, and
said for the most part; those with “true” toxic Mito seem to improve. She has however, seen a few that seem to get
“stuck” in their recovery for whatever reason.
She does believe that in general, those that have a Mito toxic reaction
to medications most likely had a genetic mutation which allowed the medication
to affect them. There are varying
degrees of this problem, so I would assume that would account for the multitude
of ways people are affected.
So, in a nutshell, I have been diagnosed with Mitochondrial
Disease. It will take until March to get
all of the labs back. There is no cure,
especially if there is indeed a genetic component. However, there is treatment to help encourage
the cells to function at their maximal potential. In the meantime, I will start on the “Mito Cocktail” once all labs have been drawn.
It seems this cocktail varies person to person with which supplements
are used and the amount given. I am sure
mine could change based on what the findings are.
I do believe I have found my
answer to why Levaquin affected me the way that it did. I don’t necessarily
think this is true for everyone who
has been affected by FQ antibiotics. I have always jokingly said that my family would make a great medical research study because of all the rare disorders present. I think in a way, this is what my testing may in fact do. In
this process, I could also be inadvertently helping other family members get long
awaited diagnoses. I am sure I am just beginning to learn what
all this diagnosis will entail for me.
I
will periodically update my blog to give the status of how the cocktail is
going, and to also let you know what my labs indicate. I can’t promise I will do it often. I just haven’t had the energy for it
lately. I realize I did not follow through
with my promise at the beginning of this post.
So, for my husband……Once upon a time, there was very sexy, exciting mitochondrion
that was stalked by a dark, deadly Fluoroquinolone Antibiotic…….Well, you know
the rest.
