Two Year Floxiversary: Lessons Learned

`You're thinking about something, my dear, and that makes you forget to talk. I can't tell you just now what the moral of that is, but I shall remember it in a bit.'

"'Perhaps it hasn't one,' Alice ventured to remark. "'Tut, tut, child!' said the Duchess. 'Everything's got a moral, if only you can find it.'"
- Lewis Carroll, Alice in Wonderland, Ch. 9

Today, it has been two years since receiving that ill-fated dose of Levaquin.  I haven’t posted in a while; I have been trying to use this time to reflect on how my life has changed, and to find my new role in life.  At times, I feel so consumed by it all, I wish I could run away and just hide.  While other times, I feel I have embraced what has happened.  I have dealt with chronic illness for six years now, first with my daughter's epilepsy, and now my Quinolone Toxicity and peripheral neuropathy.  Having been a healthcare provider as an Occupational Therapist, I have insight from all three perspectives; as a caregiver at work, a caregiver in the home, and now as the care receiver.   I will say the latter, has taught me the most.  The following are valuable lessons I have learned dealing with chronic illnesses from all three points of views, especially the past 2 years.  While a few of these will be familiar from previous blog posts, others are new.   I don’t necessarily always remember these lessons, and I probably need to review them myself at times.  This list is a stream of consciousness.  I thought it would be short, but it kept growing.  I would love to hear from you.  What lessons have you learned?

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Make doctor appointments on Mondays or early in the week.  On Fridays everyone in the office is ready for the weekend, including the doctor.  He may not be as focused on you, but more focused on his weekend getaway.

Make appointments first thing in the morning or first appointment after lunch, this will reduce your wait time.

Bring something to read, in case you could not get the first appointment.

Ask your doctor how he is doing.   He probably doesn’t get asked this much.  He spends all day listening to other people constant complaints, and probably very few have asked him about his day.

Fire your doctor if he is not working with you, you feel he does not fully listen, or you don’t trust his decisions.

Always make a list of questions you have for your doctor.  In such a short amount of time spent with him you will more than likely forget something.

Educate yourself about your diagnosis.  Knowledge is power and you can have a much more meaningful conversation with your doctor if you know all of the medical terms, treatment options and available testing.  Read books, research online, talk to others with the same diagnosis.

Take notes or have someone go with you to take notes.

Keep track of all medical information.  Get copies of medical records from all of your doctors.

Have doctors share information.  Make sure all tests are forwarded to all your doctors with a summary note.  This will help stop duplicate testing.  

Start a "Care Book" (See page)

BE YOUR OWN MEDICAL ADVOCATE!

Be prepared to fight insurance.   Insurance will always say no the first 2-3 times, but be persistent.  They are hoping you will give up, that is what they are counting on.  I found a well worded letter can still do the trick.

Research what medication you are being prescribed!  Ask the nurse what they are injecting into your IV before they do it. 

Medication can help with pain, and don’t be afraid to use them.  But proceed with caution!

Know you are not alone; 1 in2 people have a chronic illness.  Find support groups even if they are online.   People you meet online can sometimes be your best support. 

Remember most of the people you meet in online groups, are the ones that have not yet gotten better.  Those that have improved usually are no longer actively posting. 

Share your story, so others can learn from you.  Through sharing, you may receive advice, a doctor suggestion, or an idea you have never thought of before, that may make a difference in your health.

The Internet is not always right.

Educate your family and friends if they are willing to listen. 

Realize not everyone is going to “get it”.  Some will always think it is your fault; it is due to too much stress, lack of faith.  You have to learn to move on, and not get stressed that they don’t understand.  Find people that do understand.

It is NOT your fault that you are suffering from a chronic illness, or any illness for that matter.  We are human and are susceptible to all kinds of diseases, human error, or accidents.  Instead of asking why me, ask why not me?  We will all get something, at some point. 

No one experiences pain the same, and how it affects a person depends on their lifestyle and responsibilities.

 

It is o.k. to cry…you may even have a pool of tears.  Grieving for your former self is normal.

Watch for signs of depression.

Focus on what is “right” with you.

Write a journal.  Mine is online, but yours doesn’t have to be.  It is a good way to help with frustrations and anxiousness.

Be positive, surround yourself with positive people.  Avoid negativity.  That will not help you get better.

Ask for help.

Rely on your church, friends, and family for support.  They want to help.

It is hard to accept help!

In helping others, send cards, make a phone call, send an email, bring food in disposable containers, it is ok if you don’t know what to say.  Don’t be embarrassed that you have waited too late to call.  Any time is better than not at all.

Teach your kids all household chores; you never know when they will need to help because you are unable to do it.

Remember, your family is going though this as well.  It is not just you affected by the chronic illness.  Not all of them will react the same way.

If you are having a bad, crabby day….warn your family, and then go to your room!

Get a temporary handicapped hang tag, even if you never use it.    At least that option is there if the situation arises.

Use the handicapped space when you need it.

Don’t abuse your handicapped tag.  If there is a close space that is still reasonable for you, save the handicapped space for those who need it more.

Don’t be ashamed to use assistive devices.

Get outside of your comfort zone, test yourself, you may have gotten better and not know it. Take a trip!

Pace yourself, don’t overdo it.

Plan your day, allow extra time than normal incase fatigue hits.

It is o.k. to do nothing.  Take a nap.

Get help in the home, if your are able.

No pain, no gain no longer applies for exercise.  Slow and easy wins the race from now on.

Eat healthy.

Plan out your weekly meals:   Ask friends to prepare meals that can be stored in the freezer for future use.  If your husband travels, have him grill extra chicken before he leaves to be used later in the week.  If you are having a good day, make things to stock in your freezer for when you are not feeling well.  Use www.emeals.com for food planning, and your grocery list.

Chocolate cake is perfectly acceptable for your kids for breakfast.

Pets can be the best comfort.  They are good listeners and don’t give bad advice.

Beds can go unmade.

Read something NOT related to your illness.  Take a break from it.

Listen to uplifting music.

Crow a little.

Be grateful!

Sing!

Laugh!

Pray!

LIVE!!

 “One day at a time--this is enough. Do not look back and grieve over the past for it is gone; and do not be troubled about the future, for it has not yet come. Live in the present, and make it so beautiful it will be worth remembering.” - Ida Scott Taylor

Thanks for Reading!

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.

Mystery Solved?

I have always loved a good mystery. It has been my favorite type of book to read.  The medical field has also fascinated me, and I often think I would like to be Dr. G on Discovery Health.  When my daughter was first diagnosed with Epilepsy, I felt I had become a regular Nancy Drew trying to find out the mysteries of her illness.   I felt that it was my responsibility as a patient, or in her case as a mother, to be well informed of what was happening and to help the doctor with this process.  I could not just sit back and take the word of every doctor without investigating it for myself.  We have to be our own medical advocates.  I am convinced this is one reason my daughter finally improved.  Her doctors were over medicating her, and not one of the child neurologists in that practice would believe me.  I finally concluded if the doctors were not willing to listen to me, then it was time for them to be fired. Yes, I said fired!  I found another doctor 3 hours away, but it was worth the drive.  When the doctor first walked into the room, he just looked at her and proclaimed, “She is toxic!  She has all of the signs.”  This conclusion was backed up by a simple blood test that the others had refused to do.  He literally saved our daughter’s life.  The life she was losing, because doctors refused to listen to a mother’s instinct. 

I think doctors sometimes forget they work for us, not the other way around.  We have hired them for their expertise to help solve the mystery that is occurring inside of us.  I now have spent hours doing detective work on what is happening to me.  I have been appalled by the number of people I have found who have been affected by Levaquin, or other Fluoroquinolones.  I have been very fortunate that I have found not one, but two, neurologists that agreed that I now have a neuromuscular disorder because of Levaquin.  Many people have not been this fortunate, and doctors have turned them away, not believing that an antibiotic could cause such a thing.  However, if the doctors would just take the time to read the Levaquin information sheet, most of these side effects are listed as being possible.   It is even stated that they may become permanent!  My first neurologist did just this.  He immediately reviewed the information sheet and did research online while I was sitting in his office.  I appreciated his open mindedness.  To make sure he wasn’t missing the mark, he referred me to another neurologist.  This one seemed even more convinced of it.  He had served as a military doctor and even stated he saw more lives in the military “messed up” by Levaquin, than any other drug.  He never prescribes this medicine because of the bad effects he has seen from it.  

I have been poked and prodded by 5 different doctors, been given every blood test there is under the sun, MRIs, nerve conduction tests, EMGs, and full body scans.  All of this was done just to conclude I have no other underlying conditions.  All test came back normal except one blood test indicating I had inflammation in my body (duh, kind of new that) and the nerve conduction/EMG test.  My muscles no longer respond normally and the peroneal nerve in my right leg has been damaged.   The final verdict- I have a “drug-induced neuromuscular disorder”.

Three months later, my doctor doesn’t know when, how fast, or even if I will get fully better.  He can only treat my symptoms, since little is known what to do for such a response from a medication.  I am leery of taking more medications, since that is what got me into this mess. He appreciates this, and is very much including me in treatment discussions.  (You can see the list of my treatment choices on the “Symptoms, Medical Findings, and Medications” page.)  He has offered to start me on Nuvigil, a medication used for MS, since some of my symptoms mimic that disease.  However, because of my reluctance to be on unnecessary medication, and the fact insurance will not cover it for my current diagnosis, I am not going to try it.  It would be an experiment anyway, just to see if it worked.  So, for now, my treatment is time.  This seems to be the plight of most of us experiencing this.  We all help each other and share information on what has worked or not worked for us, since the medical community is at a loss of what to do.    That is the reason for this blog.  I feel it is my way of sharing my experience, my knowledge that I gain from trial and error.

In most cases, if a person has neuromuscular problems because of an adverse reaction, the disorder resolves after the medication has been stopped.  It is unknown why Levaquin symptoms persist in some of its victims.   One theory is that Levaquin, and other Fluoroquinolones, never leave the system.  It is always lingering there, causing the problems to persist because Levaquin crosses the blood-brain barrier.  Other theories believe that it affects us at the cellular level, or even our DNA.  I have seen on the Fluoroquinolone Toxicity groups, that some have gotten better in a few months to a year, while others I have spoken to are still suffering 5 years or more later.   Why does this drug group affect some and not others?  Why does some find healing and others don’t?  Perhaps this is another mystery for all of us victims  to help solve together through sharing our stories.

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Valuable lessons  I have learned dealing with chronic illnesses:

1.  Always make a list of questions you have for your doctor.  In such a short amount of time spent with him, you will more than likely forget something.

2.  Take notes, or have someone go with you to take notes.

3.  Keep track of all information

4.  Have doctors share information.  Make sure all tests are forwarded to all your doctors with a summary note.  This has helped stop duplicate testing.  

With my daughter I started a "Care Book".  In a 3 ring binder, I included the following information, and it goes with me to every appointment.

1.  Contact and insurance information.  This includes a list of all of her doctors.

2. Medication chart.  This includes all meds she had been on, why they were stopped, the dates she took them, and if there were any side effects.  You would be surprised what you forget after many years of different medications.

3.  Labs, Test, and Hospital Stays.  I keep all copies of her test and lab results.  I keep record of all hospital stays and what occurred during them.

4.  Appointment Information.  This is where I keep all questions I have for the doctors, and what is discussed during each appointment.

5.  Correspondence.  This includes all letters to and from doctors and insurance companies.

Having all of this in one concise place has helped tremendously in her care.

The Mad Hatter

"If I had a world of my own, everything would be nonsense. Nothing would be what it is, because everything would be what it isn't. And contrary wise, what is, it wouldn't be. And what it wouldn't be, it would. You see?”
— the Mad Hatter

I feel like I met with the Mad Hatter the past two days, not because I think he is mad, he actually appears quite intelligent, but he talks in circles. Don’t get me wrong, I really like him.   I met with my new neurologist, and he is the kind of doc which talks out his theories as he works them out in his head. He is more familiar with rare disorders, and has helped others that have had neurological problems from medication reactions.   He goes into long explanations of why he is heading in certain directions with testing, to hopefully diagnose me.  

 "'Speak English!' said the Eaglet. ‘I don't know the meaning of half those long words, and I don't believe you do either!'"
- Lewis Carroll, Alice in Wonderland, Ch. 3

 I think anyone who is trying to pinpoint a diagnosis probably can understand.  I left feeling discouraged and broken.  My reflexes are diminished in both my upper and lower body.  I discovered I have muscle atrophy in my right foot and leg.  I can not move my toes!  How come I never noticed that?!?!  I notice I am not walking the same, but not that!   Even my ankle does not want to move through its full range of motion.  It is discouraging to be constantly pointed out that you are broken.  You no longer function as God intended.  You are not the same!

  

Today he scheduled another nerve conduction and EMG test.  I got the results immediately, which I liked.  The last time I had to wait two weeks.  Today I learned my main nerve in my right leg (peroneal nerve) is damaged from the knee down.  He also discovered that my EMG is abnormal.  It did not appear this way a month ago.  In other words, not only is the nerve not working correctly, but neither are the muscles.  In addition, the muscles in the leg without nerve damage, are not working correctly.  He also ruled out MMN, the most recent diagnosis I had been given.   All of this just leads to more testing.....more blood work, and ANOTHER MRI.

I feel I am just running in circles. We were first told I could possibly have Myasthenia Gravis, then not. Then MMN, then not.  Now Myathenia Gravis is on the table again for a possible diagnosis, or MS.   Who knows!   He also said I may not ever get a “name" for what is going on.   It could be ALL of my symptoms are because of the adverse reaction to Levaquin.  He is trying to make sure there is not something else going on as well.   It is odd to wish for a disorder, but you see, if it is all because of Levaquin, there is no treatment.  A diagnosis may give me treatment options. 

The Mad Hatter enjoys frustrating Alice.  I don’t think my doctor’s intentions are to do that, but I am even more frustrated than before.  I no longer have a diagnosis; I may never get one, and may never be able to get treatments.  All I have to say is- stay away from fluoroquinolones!  Then, possibly, you won’t have to visit the Mad Hatter.


(Please see the link to the right to sign a petition for the FDA to include a "black box" warning that Fluoroquinolone antibiotics can cause Central Nervous System disorders.)

Brought to You by Levaquin

On July 17, 2010, I entered Alice's rabbit hole~Well, pushed is more like it.  I am still falling down that hole, and don't feel I have hit bottom yet.  I have entered a world I don't recognize.  Even my own body is different.  Nothing is the same, I have to learn about the all new, not necessarily better, me.  My body no longer reacts to things the same way.  I am losing hair, my body has gained, lost, gained, and then lost weight again from the tailspin it is in now.  I sometimes walk as if I am drunk.  My body protests with weakness and pain if I do even the slightest activity.  This is not me!  I used to work out daily, I painted the whole inside of my house by myself.  I used to walk my dogs, work in my garden beds!  What do you mean my body is exhausted just by getting dressed every day?!?  What happened!?! Snap out of it!!   LEVAQUIN happened! Just like when Alice drank from that ever famous bottle that said "drink me", and changed her body and her surroundings, that is how I feel Levaquin has affected me.  I am now trapped in this unfamiliar world, that I now have to make familiar.   

On July 17, 2010, I woke with a case of food poisoning which was relentless.  My husband took me to an immediate care emergency clinic, where I was given 3 bags of IV fluids because I was so dehydrated.  Since my WBC count was extremely high, the physician decided I also needed an IV antibiotic, "out of precaution".  I was given the medication Levaquin through the IV and had an immediate adverse reaction. I began experiencing extreme pain, in my hips, back, and head.  By the time it was over, I was extremely weak, and felt as if I was moving through thick mud or concrete.   I was then given predinosone through the IV to help counteract the reaction from Levaquin, but was made worse.  For eight days, I felt as if acid was coursing through my body.

Over the past two months, my symptoms have increased.  I have been having severe joint pain in every joint, muscle weakness and neuropathic pain in my feet.  After multiple trips to the neurologist, he saw I was getting worse, instead of better.  He referred me to a Rheumatologist to help rule out other disorders.  I have been given a cervical MRI, multiple blood tests, nerve conduction/EMG test, full body scan.  All came back negative, except for one.  The nerve conduction test showed that I am having demyelinization of the peripheral nerves in my body.  I have been diagnosed, temporarily with MMN (multi-focal motor neuropathy), an autoimmune disease that mimics ALS. Temporary, because neurological disorders are hard to diagnose, and my symptoms could change over time, which could change the diagnosis.   It is very rare, and there is little literature on how to treat it.  This past weekend, I was given 3 solu-medrol infusions through outpatient.  It was a chance I knew I was taking.  No one could guarantee it would help, or possibly make things worse.  I was at a cross roads, where a decision I did not want to make, needed to be made.  I took the chance, and unfortunately it did what we did not want to happen.  It made me worse.

My neurologist has now referred me to another neurologist that is more familiar with rare disorders.  I have mixed emotions about this, because in this short time, I have become attached to my current doctor.  I really like him, and he listens.  However, he is also wise enough to know that my condition goes further than what he is equipped to understand.  Another great aspect I like in him.  

One of the biggest questions is did Levaquin start this, or was it just a catalyst to something already there.  Either way, Levaquin IS the reason for my current condition.  My first symptoms actually started in my hands about a year ago, with muscle twitching and weakness.  I thought maybe I was just using the computer too much, so I backed off some from using it.   Then the symptoms spread, and I was feeling muscle twitching throughout my whole body.  I started to notice I was getting weaker with my workouts, instead of stronger, and was able to do less and less. I had just complained to my primary physician, that something was wrong.  I was feeling really tired, getting weaker, and had these annoying muscle twitches everywhere!  She had just referred me to the neurologist when this happened.  Ironically, I was given the Levaquin in between the referral and my first neuro appointment.  

With that said, I have to back up to May, 2009.  I was also given Levaquin then for a skin staph infection.  I had adverse reactions then too, but they seemed really mild compared to now. I complained of extreme fatigue, joint pain, a "fluish" feeling.   That is about the time these general "annoying" symptoms started.  Levaquin is known to cause Central and Peripheral Nervous System disorders in less than 1% of the people who take it.  So we are back to the question......Did my first reaction to Levaquin slowly start something "cooking" in my nervous system, causing the first symptoms, and the second reaction was a catalyst?  Or was something there already, and the Levaquin just made it worse.  My current neuro suspects everything is related to the Levaquin.  

Either way, I am where I am regardless.  I am still falling down that rabbit hole, hoping to hit the bottom soon, so that I can find my way back home.