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.
Thanks for reading!
I have added a page tab for mitochondrial disease which includes many links.