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!

The Mighty Mito ~ Part 2

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.

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)

Mito or Not Mito: That Is the Question

Mitochondrial Dysfunction* or not, that seems to be the common question regarding my health.   I now have had THREE doctors say they suspect I have mitochondrial dysfunction.    Now proving it is a whole different matter, and a series of events I am not sure I want to undertake at this time in my life. 

Here is the problem with testing for mitochondrial damage, or at least how it was explained to me.  It is not a run-of-the-mill test. Only a couple of labs in the US know how to test for it, and it can costs from thousands to tens of thousands of dollars.  Often insurance will "pre-approve" it, only to later not cover it.  I had my follow up visit with my neurologist this week and we had an hour and a half discussion weighing the pros and cons of having this testing done. A muscle biopsy has been suggested by two neurologist and the most recent, my rheumatologist.   However, that will entail a 6 inch incision in my bicep and/or thigh.   It would only confirm whether I have mito dysfunction or not.  There is no cure for it.   The other option is to have both my mother and me undergo testing to look at the mitochondrial DNA.   A person’s mitochondrial DNA only comes from their mother, and by comparing the two, they can tell if there has been damage.  She has Parkinson’s, and I don't want her to have to endure a lot of testing.   Although she said she would do it.   But again, very few labs are equipped for this, and it would just confirm it or not; still no cure.  It would only give me an answer on whether I will get better or get worse.  I am not sure I want that answer.  Right now I have hope for getting better.  I am not ready to find out differently.  So for now, I am not doing the testing.  If in a year or two, I am still having muscle fatigue that interferes with daily life, then I will consider it again.  If they are closer to a cure, it may also be worth it.   Here is a website about mitochondrial dysfunction.  Their recommendations for treatment: rest, energy conservation, good nutrition, supplements.....that is what I am doing now. http://www.mitoaction.org/

The pain in my right foot continues to increase.  It is now suspected I have Tarsal Tunnel Syndrome (like carpal tunnel, but in the foot).  At first I was excited by this news…maybe I have better hope of getting treatment.  My foot causes me the most amount of pain and also interferes with my independence the most.  However, I am finding that this condition is rare. Yay me! (dripping in sarcasm).   However, it is a common occurrence with Levaquin adverse reactions.  It does not always respond well to treatments, including surgery. My neuro has started steroid injections (I know, I know ~ no steroid for floxies!), and is planning on a repeat nerve conduction/EMG in a month to test specifically for this condition.  He is waiting the month to see if the injection and an increase in my Gabapentin will help.  However, I can tell already it is not helping.  After that, it sounds like I will be getting yet another doctor referral for this condition.

This past week has been a roller coaster of emotions for me.  I now am hearing from a third doctor they suspect irreversible mitochondrial damage, I have Tarsal Tunnel Syndrome, and I received a PERMANENT handicapped parking tag.  You always think you want one of these, until you HAVE to have one.  My husband, with stubborn protests from me, is also looking into hand controls for the car.  Not a proud moment for me.  I want to fix me, not the car.  However, I can’t drive, and his work is requiring more and more travel.  A non-driving mom of two just does not work in today’s world. 

 I have dusted off the cane; and I now have to use it again due to increased pain, increased atrophy in my right foot, and decrease in my balance.   This back slide in progress is frustrating.   However, I am hoping that getting a confirmed diagnosis of Tarsal Tunnel Syndrome will open up treatment options for me, giving me a small light at the end of this long tunnel.

Thanks for reading!

* It is a theory that the fluoroquinolone antibiotic adverse reaction causes mitochondrial problems with those of us who have been affected so much.  Levaquin works by destroying the mitochondria of the bacteria.  It is a theory that it has caused damage of the mitochondria to the "good" cells also.  Statin medications have also been found to do this.  Please note this is a very simplified explanation.  Article on Mitochondrial Toxicity:  Mitochondrial Toxicity  (note added 3/15/11)

A Revisit With the Mad Hatter

Lots of news this week!  I met with the Mad Hatter again, that is my neurologist for those who are just now following.  I am not sure how he would feel if he knew I referred to him in this way.  He got this term of endearment when I met him the first time.  He is the kind of doctor that starts talking in circles; one train of thought leads him to another requiring me, as his patient, to round him back in and to the topic at hand.  It is this kind of thinking though that has me like him.  He is a doctor that loves a good mystery.  What a coincidence, so do I; therefore, it makes us a good pair.  He spent well over an hour with me as if he had nowhere else to go, discussing Levaquin and different theories of what is going on inside of my body.  He likes the fact I am actively researching information and sees this as a positive attribute, not a negative one as many doctors would.

He proceeded to tell me that I did indeed have both large and small fiber neuropathy with sensory, motor, and autonomic involvement.  What does that mean?  My peripheral nervous system is now a mess.  The good news- the large fiber nerves, those with myelin, usually repair themselves.  To what degree is unknown until it happens.  The large fiber nerves control the skeletal muscles.  I already see improvements in my right foot where my large fiber nerve (peroneal nerve) is damaged.  I can move my toes more and also have increased movement in my ankle.  I can heel walk now.  Not that heel walking is a very useful thing.  I don’t exactly go around walking on my heels, but it does show improvement.  My cane has also not been used now for the past few weeks.

The bad news- small fiber neuropathy usually does not improve, and that is what is responsible for all of the burning pain I have in my arms and legs.  I asked him about my other symptoms- numbness in my feet and hands, the constant feeling of a low voltage current running through my body, freezing feeling of hands and feet.  Yep, all related to small nerve neuropathy.  More bad news, small fiber nerves also control cardiac and smooth muscle (autonomic function).  More questions- Is that what is causing everything just feel “slow” in my body?  Is it causing the digestion problems, the no sweating, and the changes in my blood pressure, resting heart rate, and temperature control?  Yes, all small fiber.  Oh that is not good!  But, you know I felt relieved in a way.  It was all validation for what is going on.   

'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

All of this does lead my neurologist to ask more questions.  Why are my muscles as weak as they are and fatigue so easily?  Why was my EMG abnormal?  These are signs of large fiber neuropathy, but that only shows up on the nerve conduction test in my leg.  Small fiber neuropathy, which I have everywhere else, should not cause this much weakness.  One theory of Fluoroquinolone Toxicity is that it causes mitochondrial dysfunction.  I asked him about this and it really peaked his interest.  In a VERY simplified explanation, the mitochondria are the energy source for our cells.  If they are not working correctly our cells have no energy; thereby our bodies have no energy.   They are basically little engines in each cell that are responsible for oxygenation and getting rid of the cellular waste: lactic acid, toxins, etc. When the mitochondria don't work properly, it causes pain due to lactic acid build up and exhaustion since the cell is bogged down with waste.  This could account for the muscle weakness.  He has ordered testing for this, blood work that could show if I have an increase in lactic acid in my body.   There is a lot of research going on right now about mitochondrial dysfunction.  The thinking used to be this only occurred in children, but now scientist are realizing this happens in adults as well and could be the source of many disorders. 

So we ended our hour long meeting with the understanding we will look at the mitochondrial avenue.  Then we will proceed from there.  He has already informed me to count on meeting my deductible with him next year because he has some other things he is interested in looking into if the mito theory does not pan out.  I have been so fortunate to find this doctor.   He may not find the specific changes that Levaquin has done to my body, but he is going to darn well try.  He wants to know- Did Levaquin cause one big explosion in my body and I am left dealing with the aftermath, or did it cause an explosion that has now started a progressive disorder, or one that will not allow improvement?  That is a question only time may tell.

In the news front two large things happened that could affect my family’s life.  There was a break through with stem cell research in Epilepsy and Johnson & Johnson lost their first Levaquin trial!  I have links below to those articles.  I have also posted links for Small Fiber Neuropathy and Mitochondrial Dysfunction.
Thanks for reading!
Johnson & Johnson Loses First Levaquin Trial
Stem Cell Research Holds Promise For Epileptics


Small Fiber Neuropathy--Wikipedia
Small Fiber Neuropathy--Cleveland Clinic


Chronic Fatigue Syndrome and Mitochondrial Failure
Drug Toxicity and Mitochondrial Dysfunction

I will post these links on my Levaquin and Peripheral Neuropathy pages so they can be easily accessed later.